Epilepsy Talk

A Menu of Epilepsy Auras | June 6, 2010


One of the good thing about auras, is that if you’re aware of them, they’re effective (if unpleasant) warning signals of an oncoming seizure.  I didn’t learn to identify mine (mouth filling up with saliva and disgusting metallic taste) until I was well into my 20’s.  Then I added dark spots to my repertoire and I was having all three when I met my husband!

The good news is that once I recognized them, I would instinctively know to hit the floor (before I fell) or find a safe place to weather out the storm…

The fact is: There are probably as many or more types of auras as there are types of epilepsy…

Auras can last from several seconds to as long as an hour, and can sometimes end with feelings of extreme tiredness, weakness, heart palpitation, sweating and warmth throughout one’s body.  And some people can experience auras and have no seizure(s).

Each person and each person’s aura patterns are different.  They vary significantly between each individual.  Yours may happen right before a seizure or several minutes to hours earlier. Common warning signs right before seizures are changes in bodily sensations, changes in your ability to interact with things happening outside you, and changes in how familiar the outside world seems to you. Other warning signs that may happen hours before a seizure are depression, irritability, sleep disruption, nausea, and headache.

People with complex partial seizures are the most likely to experience warning signs. Approximately 55% to 65% of people with these seizures experience some type of aura. It’s unclear whether having seizures that arise from one particular side of the brain makes you more likely to have auras than people whose seizures arise on the other side.

For lots of people, auras occur in an ordered progression. First you may feel fear…then déjà vu (the feeling that you’ve been there before)…then a strange taste in your mouth.

The part of your brain where your seizures originate (your seizure focal point) also may be linked to a specific type of aura because an aura represents the beginning of a seizure. Since different parts of the brain are responsible for different things, the warning signs you experience will be related to the functions of the section of brain where the seizure is about to occur. People whose seizures begin in the temporal lobe tend to have certain types of auras and those whose seizures begin somewhere else often will have different types.

Here are some types of auras that can happen alone or in combinations…

Visual changes

Kaleidoscope effects

Visual hallucinations

Shimmering sensations

Vibrating visual field

Distortions in size, shape or distance of objects

Bright lights or blobs

Zigzag lines

Tunnel vision

Blind or dark spots in the field of vision

Curtain-like effect over one eye

Blindness in one eye

Motionless stare

Dilated pupils

Auditory changes

Hallucinations — hearing voices or sounds that don’t exist

Being unable to understand spoken words

Muffled sounds

Buzzing noises

Loud or whispered volume

Temporary deafness

Physical changes

Weakness, unsteadiness

Changes in heart rate

Sweating

Nausea

Vertigo

Saliva collecting in mouth

Lip smacking

Chewing

Swallowing

Strange smells

Problems speaking

Repetitive movements

Limbs jerking involuntarily

Numbness or tingling on one side of face or body

Feeling of being separated from your body

Needing to urinate

Psychological changes

Confusion

Anxiety or fear

Physical detachment

Déjà vu or jamais vu, a sense of familiarity or unfamiliarity

To subscribe to Epilepsytalk.com and get the latest articles, go to the bottom box of the right column and click on “Sign me up!”

Resources:

Steven C. Schachter, M.D.

http://my.epilepsy.com/node/58

http://en.wikipedia.org/wiki/Aura_(symptom)

http://www.coping-with-epilepsy.com/forums/f27/experience-aura-auras-2485/

http://emedicine.medscape.com/article/1184509-overview


215 Comments »

  1. It is interesting that you mentioned this. I was thinking on doing research on looking into auras and what the extent they can be

    1) how some people have the same aura

    2) how they change during the seizure.

    3) how they may have different auras

    My first and only aura prior to surgery was Flashing lights which were red and multicolor(mitochondria) it flashed and grew and then I could not talk and I was out.

    after surgery-

    bad taste that was awful and then I was out

    aura that was before seemed to have gone, I had

    Deja-vu after that

    Spots were not as dramatic but that occured about 2 years later

    Deja-vu then running seizures started to happen about 5 years after surgery

    had 2nd surgery

    things seemed real familar and lost my side vision during the aura

    the deja-vu lessened

    the running seizures seemed not be as evident

    then peripheral vision lessened and I was totally confused and could not talk.

    presently confusion occurs and then trouble talking (it comes out like babble and leads to loss of speech) my eye peripherally goes bad

    spots are becoming evident and that gives me fear

    Like

    Comment by Tonialpha — June 6, 2010 @ 4:44 AM

    • You sure do have a lot of auras on your “plate!” I feel for you. As you know from my post, all I had was the saliva, disgusting metallic taste and then big, black spots.

      Like

      Comment by Phylis Feiner Johnson — June 6, 2010 @ 8:35 PM

    • There’s an interesting article about anesthesia and eplipsy at epilepsy.com professionals. Here’s the into: “In general, when seizures occur during surgery, their onset often coincides with the introduction of a specific anesthetic or analgesic drug. However, there have been reports of postoperative convulsions that appeared to be caused by anesthetic or analgesic drugs administered intraoperatively via injection or inhalation.” The link is http://professionals.epilepsy.com/page/procedures_anesthesia.html

      Like

      Comment by Phylis Feiner Johnson — June 13, 2010 @ 9:39 PM

  2. I noticed the Physical Changes. I have nausea and other symptoms. I think I have the flu. I have been sick for 2 days now.

    Could it be aura’s instead?

    Like

    Comment by Ruth Brown — June 6, 2010 @ 10:45 AM

    • I don’t think so. I’ve been throwing up for days.

      Like

      Comment by Phylis Feiner Johnson — June 6, 2010 @ 8:35 PM

    • Sometimes I will get a EXHAUSTED aura that urges me to SLEEP….and if I refuse and push forward to get what I need to get done and all my appointments, I end up with a Gran Mal seizure later that day or within 24 hours. However, if I listen to my body and SLEEP the whole day (hopefully it’s a weekend) then maybe only minor other auras will occur and I will have dodged the BIG ONE! :-) I say, listen to your warning signs and be grateful for the auras.

      Like

      Comment by Ona Green — March 26, 2013 @ 5:52 PM

      • Hi Ona, I agree. It’s definitely stress/exhaustion calling. And if you don’t listen, you know what will probably happen! :-(

        Like

        Comment by Phylis Feiner Johnson — March 26, 2013 @ 6:55 PM

      • I have tired auras and go directly to lay down and sleep it off. I have pushed on and had nasty one before.

        Like

        Comment by Dwiggedy — August 14, 2013 @ 5:09 PM

  3. Hi Phylis, I hope you feel better. I take 1/4 cup of Pedialyte and that stops throwing up and diarrehea.

    Like

    Comment by Ruth Brown — June 7, 2010 @ 1:48 AM

  4. Well, it worked for my cat..why shouldn’t it work for me? :-)

    Like

    Comment by Phylis Feiner Johnson — June 7, 2010 @ 2:11 AM

  5. I hope you are feeling better.

    Like

    Comment by Ruth Brown — June 7, 2010 @ 8:46 AM

  6. That’s great Phylis, where did you get a way to?

    Like

    Comment by Ruth Brown — June 13, 2010 @ 9:45 AM

    • We went to Philly, wined and dined with friends…I caught up with my cousin…and Arthur threw me a surprise “white night” party (I can only drink white wine)the night before my birthday.

      I also had a 3 hour lunch with the Acting Director of our local Epilepsy Foundation (EFEPA). I sure hope she gets the position permanently. She’s young, full of ideas and enthusiasm and would be a breath of fresh air to the stoggy old-boys network at the Board of Directors meetings. Her first mission is to clear out all of the dead wood on the board. YAY!!!

      Like

      Comment by Phylis Feiner Johnson — June 13, 2010 @ 9:46 PM

  7. It’s always nice to read what everyone says!

    Like

    Comment by Tonialpha — June 13, 2010 @ 10:31 AM

  8. I like your article about anesthesia. I have had a hard time w/ it. The doctors will tell me that I will have seizures during them. I only remember twice having problems. I think the suggestion of pre-oping a patient w/ a light medication like valium or doing yoga.

    Like

    Comment by Tonialpha — June 14, 2010 @ 5:07 AM

  9. I am going to have a procedure. The doctor told me that I can have 1 or 2 epilepsy medications. I told him that I had to have something so I do not go into status.

    Like

    Comment by Ruth Brown — June 14, 2010 @ 6:26 PM

    • That’s right. In cases of epilepsy, they can adjust your AEDs with the anesthesia so you don’t have a seizure during the procedure.

      There’s a link on epilepsy.com about premedication for epilepsy patient procedures.

      “During the preoperative interview, the anesthesiologist determines and prescribes premedication for the patient. The choice of premedication can have major implications for the patient with epilepsy.

      Administering the patient’s daily medications orally with a sip of water or via an alternate route (intravenously, intramuscularly, or rectally) can avoid decreasing serum levels into the subtherapeutic range. Not only AEDs but also antihypertensives and cardiac, diabetic, and asthma medications should be given in this way.”

      http://professionals.epilepsy.com/page/procedures_premedication.html

      Like

      Comment by Phylis Feiner Johnson — June 14, 2010 @ 10:12 PM

  10. Phylis,

    How do you tell the difference between an aura for a seizure and a panic/anxiety attack? I was hospitalized in February for a week because I had 4 seizures in one day, which had never happened. I had my husband call an ambulance so I could get something to stop them. My neuro admitted me to do a video EEG for a week. I had both epilepsy and non-epilepsy seizures. I am going to a psychologist next week for a consulation for anxiety. My problem is I don’t know which is which.

    Like

    Comment by Tennille English — May 4, 2011 @ 10:18 PM

    • Here’s one thought: Seizures that are psychological in origin are often called psychogenic seizures. These seizures are most likely triggered by emotional stress or trauma.

      Some people with epilepsy have psychogenic seizures in addition to their epileptic seizures.

      It’s a legitimate seizure and should be treated that way, but it’s not necessarily caused by a problem in the brain.

      In others words, you could have BOTH.

      So your auras might be similar or different. (A nice way of saying I don’t have a real answer to your question!)

      Doctors have identified certain kinds of movements and patterns that seem to be more common in psychogenic seizures than in seizures caused by epilepsy. Some of these patterns do occur occasionally in epileptic seizures however, so having one of them does not necessarily mean that the seizure was non-epileptic.

      Video-EEG monitoring is the most effective way of diagnosing these seizures…so you’re definitely on the right track.

      It allows prolonged simultaneous recording of the patient’s behavior and the EEG. Seeing EEG and video data at the same time, permits precise correlation between seizure activity in the brain and the patient’s behavior during seizures.

      Video-EEG can be vital in the diagnosis of epilepsy and epileptic seizures. It allows the doctor to determine: whether events with unusual features are epileptic seizures…the type of epileptic seizure, and…the region of the brain from which the seizures arise.

      If you DO have psychogenic seizures, it doesn’t necessarily indicate that you have a serious psychiatric disorder.

      The problem does need to be addressed and many patients need treatment.

      Sometimes the episodes stop when the person learns that they are psychological.

      Some people have depression or anxiety disorders that can be helped by medication.

      Counseling for a limited time is often helpful. And the prognosis is good, with 60 to 70 percent of patients alleviated of seizure symptoms.

      Another possible way of coping is to reduce your stress, take time out, go for a walk, try deep breathing (but NOT hyperventilating!) music, meditation, muscle relaxation or even biofeedback.

      And above all…be kind to yourself.

      Like

      Comment by Phylis Feiner Johnson — May 5, 2011 @ 11:55 AM

      • Hey guys, Treatment for emotional disorders can be complicated for those of us with epilepsy as one can actually trigger the other. Psychogenic treatment options should be discussed in relation to epilepsy thoroughly with your doctor before settling. I’m a newbie to chat and have appreciated your inputs.

        Like

        Comment by Donna — January 18, 2014 @ 2:24 PM

  11. Tenille,
    Thank you for sharing your information.
    I just came out of a monitoring unit where they increased Keppra XR by 2 (12) and Zonegran by 2 (6) and discontinued Tegretol. They changed my VNS too. I have to act mellow from the hospital visit. It is hard to keep my gait at times. Diarrhea at times. Emotional swings do to the change of the medication in the hospital.

    They also changed the VNS.

    They asked if I would go on a drug study similar to Tegretol. Oh boy!

    We are all strong people. I think we all are! The medications throw us for a loop at times!

    Like

    Comment by Toni Robison — May 4, 2011 @ 10:39 PM

  12. Toni,

    Welcome back!

    Do you think these symptoms are part of getting used to the drugs or lasting side-effects from the dosages themselves?

    I have to give you credit after all you’ve gone through to volunteer for a clinical study.

    Do you know who’s running the trials or whether it’s an adjunct med for partial-onset seizures?

    I sure hope you feel better. It breaks my heart to see you so miserable. :-(

    Like

    Comment by Phylis Feiner Johnson — May 5, 2011 @ 12:01 PM

  13. I never told you what happened during the procedure. I was having aura’s so I went to the ER. I had called my doctor before I went.

    They only gave me Lorazepam. They did not give me my regular pills until my seizures got real bad just before the colonoscopy. Then they asked me if I wanted to go through with it.

    I had done all of the pre-op and I figured I might as well go through with it. There I was having seizures or auras, I am not sure which. No one would make the descion for me, including the doc.

    I had seizures during the colonoscopy. It was the first time my doc had done one with a person having seizures. I do not know if he stopped before he completed it.

    I think it scared him.

    Was it stress, or auras, that caused my seizures? I had the same problem with another procedure where I took my meds. I had to cancel because I had to be real still during this procedure.

    Like

    Comment by ruth brown — May 13, 2011 @ 5:16 AM

  14. I think it was a combination of stress and the ignorance of the doc.

    Maybe next time you have to go under anesthesia you should check with your neuro for advice?

    Like

    Comment by Phylis Feiner Johnson — May 13, 2011 @ 2:46 PM

  15. I had auras all my life but they didn’t become full seizures until I was about 13 or 14. The Dr. Says I have a Neurological Migration Defect in the temporal lobe of my my brain (thus my aura being dajavue) The don’t always turn into full blow seizures in fact most of the time they go away,

    I didn’t want to tell my dr. that the pills weren’t 100% efective and have maybe 2-4 full blown seizures a year that I didn’t always admit to for the last like 10 years cause I didn’t want to lose my license, I am now 29 and still on the same meds for about 15, years. But a few months ago I woke up in the middle of the night, around 4 and had a aura becoming a seizure. (It never happened at this time of day before, not even just an aura) So I figured I’d finally come clean and fess up to the entire ordeal.

    He upped the meds and a couple months later I had a seizure (which I wouldn’t have been that bothered by) except this time I was on my tread mill and I didn’t get a warning sign. All I remember was I was standing there running and all of the sudden I woke up on the floor with rug burns on my hips and a black eye. I told my Dr. right away and he upped the meds again.

    But the biggest thing that pissed me off in that whole ordeal was that I didn’t get my usual aura. (which I now realize has been a blessing for someone who has seizures).

    Lately I’ve been kinda afraid that my warning sign might be gone. I’m feeling pretty alone, cause I don’t think anyone realizes how much this has scared me. I just hope that the med increase will take care of my seizures, or at least that I’ll never have a seizure again without getting a warning sign.

    I guess what my biggest intention for writing all this is because for the first time I feel like my life is a whole lot different from everyone elses, I feel like I’m defective compared to the average person, (especially to my twin sister who has no health problems at all.) I’m kinda scared that after all these years something as little as not having a warning sign is affecting me inside so much

    Like

    Comment by Robin Zank — November 16, 2011 @ 4:50 PM

    • I cant say I know how you feel, but I feel sooo simular to this..I even have a twin sis that’s perfectly healthy and better than me in so many different ways. I’m 25 and started having seizures when I was 19.

      Like

      Comment by Sara Weber — September 2, 2013 @ 7:01 PM

    • It must be really tough to have a twin without epilepsy.

      I know that Candi has a sister (not twin) who also has epilepsy. I don’t know if that’s a comfort or not. :-(

      But I do think some blood work and further diagnostic testing would be useful before your doc stuffs you up with more pills. These links may help…

      Beyond EEGs…Diagnostic Tools for Epilepsy

      http://epilepsytalk.com/2010/09/13/beyond-eegs%E2%80%A6diagnostic-tools-for-epilepsy-2/

      Auras without Seizures

      http://epilepsytalk.com/2013/02/18/auras-without-seizures-2/ |

      Like

      Comment by Phylis Feiner Johnson — September 2, 2013 @ 7:45 PM

    • Hi Robin, I so empathize with how you are feeling, as so much of this is me..
      Let’s agree to try to remember that there is more to us than our epilepsy and that every day people are looking for ways to make a difference in this world, maybe this is ours.
      PS, Phylis is one smart cookie, with some really good advise.

      Like

      Comment by Donna — January 18, 2014 @ 2:44 PM

  16. First of all, you’re NOT defective any more than the rest of us here. (If you call ME defective, I’ll wring your neck!)

    Secondly, I certainly understand your concerns and fear.

    If you’re still worried about the med levels, have blood work done, so you can see whether the levels of the meds in your body are too little, just right, or too much.

    As for the auras (or lack of them), you might want to consider keeping a Daily Seizure Diary — noting your sleep patterns…what you eat and when…your daily activities (and emotional upsets), how you feel before a seizure, during a seizure, after the seizure and the duration.

    This might give you a more clear idea of what’s going on with your body. It could be that your aura has changed and you don’t recognize the “new” one.

    One more thing. I’m inclined to believe that since your seizures didn’t begin until your teens that they might be in some way hormonally related. Do you, by any chance have them around the time of your period?

    Like

    Comment by Phylis Feiner Johnson — November 16, 2011 @ 6:13 PM

  17. Thanks I really appreciate the response. And to answer your question, at first my mom figured that might be the situation, but after a while of documenting and stuff it didn’t seem to be a pattern. Plus (not to get too personal) I am on Meraina and I maybe have a slight period once a year. But other that it does make sense that maybe puberty gave my auras the final kick into overdrive. I remember trying to describe my auras before to my mom when I was like 7 or 8, but I guess I can’t blame her for not being able to give me any advise. I just remeber the day I first had a seizure, I was getting ready for school, I had an aura(I figured it was just another of the same old thing) until things started to go dark, and i woke up on the floor with an EMT asking me my name. I was kinda like, “oh so that’s what those where” I don’t have auras allot anymore, and when I do they usually go away, but when I start feeling dejavu, nervous, and like I don’t know whats going on around me, I know that it’s time to hit the floor cause I know what’s comming next. I’m hoping the reason I didn’t get an aura this time was because I had been running on the tread mill for about 15 minutes and that maybe because my motablism was going that I just didn’t get time for the warning to start in one spot and slowly spread out. I’m a little weary about running on the tread mill, My seizure was on Friday, and I haven’t run since. I will tell you one thing I’m never going to run without the safety stop clipped onto my shirt. I would probably thought that maybe it was just that I blacked out from running, even though I didn’t have my warning I new a seizure had taken place because when I woke up I could feel the pain in my eyes from rolling back.
    I’ve been doing tae boe and indoor exercises since then, cause the treadmill is in the garage. I plan on giving the treadmill another chance, but only when my husband is at home, so that I can call him when I start running, and if he doesn’t get my second call 1/2 hour later to confirm I’m done and comming in the house, then he better come out and check on me.

    Oh! and a nother thing that just came to my mind, the only other pattern I notice in my seizures is that they usually occure in the morning around 7am-2pm-being the latest. (thus why I was a little worried when I had that seizure 3 or 4 months ago that took place somewhere around 3am.

    PS. It feels really nice to finally talk to someone about this. Instead of just my neurologist for the past 15 years

    Like

    Comment by Robin — November 16, 2011 @ 7:56 PM

  18. Geeze, I’m stumped about why you have seizures then, but these 2 article may help you:

    Epilepsy and Exercise (Maybe you should ramp it down a little…)

    http://epilepsytalk.com/2009/11/13/epilepsy-and-exercise/

    Epilepsy and electrolytes

    http://epilepsytalk.com/2011/10/16/epilepsy-and-electrolytes/

    Like

    Comment by Phylis Feiner Johnson — November 16, 2011 @ 9:23 PM

  19. I have had an aura twice in past 2 weeks after seizure free for about 5 years. Both auras were not followed by seizure. Any input as to why this is happening>

    Like

    Comment by michelle — November 17, 2011 @ 3:45 AM

  20. I’d never heard of this, so I looked around and apparently they are simple partial seizures.

    How about if you keep a daily seizure diary and maybe you can see what’s triggering this? (A breakthrough seizure possibly, or warning of a possible one?)

    Are you on any meds? If so, bloodwork might be a clue.

    TELL YOUR DOC!

    Like

    Comment by Phylis Feiner Johnson — November 17, 2011 @ 12:23 PM

    • no I’ve been off tegretol for about 4 years- just on tranxene for anxiety. Going to Dr today

      Like

      Comment by michelle — November 17, 2011 @ 2:07 PM

  21. Excellent. Please tell me what the doctor says. I’m in South Carolina for an epilepsy charity event, so I’m only checking my email (and website) once a day. But, if you need to, you can call me on my cell. (610-517-7576) and at least leave a message and I can call back from the caller I.D

    Good luck!

    Like

    Comment by Phylis Feiner Johnson — November 18, 2011 @ 1:56 PM

  22. enjoy south carolina! dealing w/ nausea and just do not want to take meds. but doc says is stomach not meds., went to ER. They noted my discomfort and no voice and felt they would do a throat work up and rule out . Told me to contact a GI doc and Epileptologist stating it was meds. or stomach problem. Not an immediate emergency!

    Like

    Comment by Toni Robison — November 21, 2011 @ 4:02 AM

    • Strange that something like colitis would affect your voice…? Go for the throat work and then a colonoscopy (once you find a good G.I. guy)

      The prep for the colonoscopy is worse than the procedure, but make sure the head anesthesiologist knows you have epilepsy and will address your meds from the start.

      Toni, I’ve had colitis for years. And there are easy, non-reactive drugs. I’ve been taking Hyoscyamine for 30 years without incident (but I’m sure there are newer meds out) and basically it paralyzes your colon temporary until the cramping stops. It works with no side-efects and no dangers. I don’t know how it does its magic, but it works!

      Like

      Comment by Phylis Feiner Johnson — November 22, 2011 @ 2:49 PM

  23. My son is 18, when he has experienced auras as long as he can remember, he would say ” mom I am having deja vu, and it is making me sick”, he would have to lay down for a few minutes and then he would be fine. I never thought much of it. I used to experience it myself when I was a kid. When he was 14 he would complain of it and then pass out for a few seconds, when he would come to he was sweaty, grouchy and tired. I took him to the pediatrician and they did a test on his heart and decided that it was due to a slightly enlarged heart, and tachycardia. I thought no more of it, and he only did it maybe 3 times from 14 to 16. Well on June 17th of this year, we were at Myrtle Beach, and he had a horrible Seizure that lasted for minutes. He was jerking, vomiting, unresponsive, unconscious, sweating, and he urinated on himself. When he came to he was argumentative, and trying to run for about 30 minutes. He does not remember anything that happened for a few hours. He remembers waking up at 8:00 a.m. and getting in another bed, he says he was feeling deja vu then, and the next thing he remembers was us in the ambulance right before we got to the hospital. That was around 2:00 p.m. He had not been out in the sun for 2 days so I know it wasn’t the heat. He has passed out once since we came home and numerous times he says he has felt the deja vu. We have been waiting for the neurologist to see him, his appointment is for August the 28th and in the meantime his family physician has him on 100 mg. of Neurontin three times a day. This site has helped me understand this somewhat.

    Like

    Comment by Serena Starr — August 2, 2012 @ 2:37 AM

    • I know you must be frightened Serena, but it will be comforting to finally get some answers.

      One suggestion before you go to the neuro: try to keep a Daily Seizure Diary, noting your son’s sleeping patterns, what he eats and when, daily activities (including unusual emotions), how he feels before a seizure (auras AND triggers?), during a seizure and, if you can, the duration of the seizure. That can help the doc get a handle on what your son is dealing with and perhaps start out with a better understanding.

      Here’s a general article with tips and resources:

      If You’ve Just Been Diagnosed with Epilepsy…

      http://epilepsytalk.com/2012/04/30/if-youve-just-been-diagnosed-with-epilepsy/

      And here are some valuable tips to read before you go to the neuro:

      Three Secrets to Better Care from Your Doctor

      http://epilepsytalk.com/2010/06/13/three-secrets-to-better-care-from-your-doctor/

      Let me know the outcome and how you do…

      Like

      Comment by Phylis Feiner Johnson — August 2, 2012 @ 9:01 AM

  24. Hello all, I am a 52 year old man and I get aura’s without a headache or seizures about 3 to 5 times a year, its zig zag lines that get bigger and bigger until it goes away, usually last 20 to 30 minutes, it effects what I am doing because my vision is messed up for that lenth of the time. when its over I feel a little weak and blah. The other morning I awoke at 6 am to get ready for work and an aura started and lasted 30 minutes, a week before that one I had two aura’s in the same day, none of this has happened before, I never had two in the same day or that time of the morning, Is this something to be concerned about or am I overreacting, I think I should go and tell my doctor about the aura’s, Thank People

    Like

    Comment by David Hall — September 8, 2012 @ 9:04 PM

  25. According to The International Classification of Epileptic Seizures, “Auras without subsequent seizures should be considered a type of SPS.” (Simple partial seizures — which occur without losing consciousness..)

    And popular opinion is that “something is going on in your brain but it isn’t spreading.”

    I don’t mean to scare you and I’m not saying this as a diagnosis, but I DO think you should go to a neurologist for an EEG to either put your mind at peace or to find out the underlying cause.

    EEG (Electroencephalogram) is a non-invasive test which detects and records electrical impulses on the surface of the brain. These impulses are transmitted from small metal discs, placed on the person’s scalp, through wires which are connected to an electroencephalograph.

    This instrument is used to register the activity and record it on graph paper or on a computer screen. It is a safe and painless procedure which will not affect you in any way.

    An EEG is used by a neurologist to determine whether there are any irregular electrical activities occurring in the brain which may produce seizures. It can help identify the location, severity, and type of seizure disorder.

    Note: An abnormal EEG does not diagnose epilepsy nor does a normal EEG reading exclude it. (I know, it’s really confusing but EEGs can come out with a false positive or a false negative.)

    And if you’re casting around for a neurologist, this link may help: 2012 List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

    http://epilepsytalk.com/2011/05/03/newly-updated-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors-2/

    It’s a compilation by website forum members who have had positive personal experiences with docs over the years.

    Good luck to you David, and please let us know the outcome and how you’re doing!

    Like

    Comment by Phylis Feiner Johnson — September 9, 2012 @ 11:07 AM

  26. i thought that auras could also be the seizure itself? I was recnetly diagnosed w TLE/complex-partial seizures, based one some of the examples noted, which I have experienced.

    Like

    Comment by it's just me — January 10, 2013 @ 1:21 PM

  27. As I understand it, auras are a pre-seizure, sort of warning. You may be confusing the aura and the seizure, since one often follows quickly after the other.

    For me it was drooling (yuck) and a disgusting metallic taste in my mouth. Then, down I’d go. Sometimes, before I had the chance to “prepare myself”.

    Like

    Comment by Phylis Feiner Johnson — January 10, 2013 @ 2:24 PM

  28. I find it hard to describe what I feel before a grand-mal. I sense my thoughts drifting away, as if I could grab hold of them again, even though I don’t know what I’m grabbing hold of. It’s not the same as just forgetting or becoming absent. If you drew a picture on a balloon and popped it, the picture is gone in a flash; forgotten. But in my case the balloon is let go; I know the picture is drifting away – I can see the balloon taking it – but it’s too far to know exactly what it is. Eventually I give up chasing it and move on. The idea that I’m experiencing the process of a thought being lost is what’s confusing, surely it’s either there or not! Yet it seems so simple at the time. I’ve never known how to categorise this sensation. I become unintentionally apathetic too. Even though I know what the aura will eventually become, I always attempt to carry on routinely, albeit talking gibberish and occasionally saying I feel weird.

    Like

    Comment by Nick Wognum — March 19, 2013 @ 1:12 PM

  29. Nick, is it sort of like losing a sense of time and space?

    Or sort of an out-of body experience, watching yourself reach for something that’s not there?

    Like

    Comment by Phylis Feiner Johnson — March 19, 2013 @ 2:35 PM

  30. A bit of both really. Sort of like reaching out for something that isn’t there, but not in the physical sense. Maybe I should boil it down to confusion! It does at least lead me to say I feel weird, which is the red light for people around me.

    Like

    Comment by Nick Wognum — March 21, 2013 @ 11:54 AM

  31. Well, the only positive thing to say is that it’s probably your aura — and a warning of an impending seizure.

    I sure can’t miss my auras — a disgusting metallic taste in my mouth and heavy salivating. (Lovely.)

    But, at least I know, it’s time to hit the floor, before the floor hits me! :-)

    Like

    Comment by Phylis Feiner Johnson — March 21, 2013 @ 12:42 PM

  32. I have been having these auras that turn into what is like a small seizure on & off for over 15 yrs now. I have seen 4 Neurologists & they have all said Migraines. I do get migraines as well. There were several years I did not have these attacks & now they are back. I have had CT’s, & EEG’s done they are normal. My MRI has a small abnormality but I’m told nothing to be concerned about. I am currently seeing my 5th Neurologist. After he did the nuero exam the flashlight put me into an attack I was unresponsive, muscle spasms, & confused for a while after words. My husband said I was out for about 15 min that was 3 days ago have had an aura on an off since & a lot of pressure in my head with sharp piercing pains, also sensitive scalp. Looking for anyone with similar symtoms or advice desperate & about ready to give up.

    Like

    Comment by Brandee — March 23, 2013 @ 4:56 PM

  33. Hi Brandee — Welcome!

    Flashing light is a “reflex” seizure trigger.

    In this type of seizure, it occurs consistently in relation to a specific trigger.

    For example, photosensitive epilepsy where seizures are triggered by flashing lights, is a reflex trigger.

    If you DO have If you have photosensitive epilepsy, certain types of flickering or flashing light may incite a seizure.

    The trigger could be exposure to television screens due to the flicker or rolling images, computer monitors, certain video games or TV broadcasts containing rapid flashes, even alternating patterns of different colors, in addition to intense strobe lights.

    And surprisingly, seizures may be triggered by natural light, such as sunlight, especially when shimmering off water, even sun flickering through trees or through the slats of Venetian blinds.

    In addition, migraines and epilepsy are more closely related than you may think.

    People with epilepsy are more than twice as likely to develop migraine headaches as those without the disorder. Research showed that more than 20 percent of people with epilepsy have migraines, compared to 11 percent of the general population.

    Evidence supports the coexistence of migraines with the following conditions:

    * In migraine sufferers, 6% have epilepsy, more than ten times than the general population.

    * In one study, people and their relatives who are diagnosed with epilepsy were found to be approximately 2.4 times more likely to have migraines than the control group.

    * In another epilepsy study, about 16% of those people who had migraines also experienced epileptic seizures before, during or after a migraine.

    * While most migraine sufferers do not have epilepsy and most people with epilepsy do not suffer from migraines, these findings still indicate a significant “overlap” of both conditions.

    Research shows that Depacon (Valproate) and Topamax (Topiramate) are effective in treating migraines and epilepsy. And each has FDA approval for treating them together. Depakote (Divalproex Sodium) also works for both, creating a therapeutic “two-fer.”

    There are also several other anti-epileptic drugs that have also been shown to lessen migraine headaches – such as Neurontin (Gabapentin), Keppra ( Levetiracetam) and Zonegran (Zonisamide). However, the dose of AEDs in the treatment of migraines is usually lower than that used for epilepsy.

    For the full scoop, read:

    Epilepsy & Migraines — Kissing Cousins
    http://epilepsytalk.com/2010/09/12/epilepsy-migraines-kissing-cousins/

    I really hope you find some relief.

    Like

    Comment by Phylis Feiner Johnson — March 23, 2013 @ 5:15 PM

    • Thank you

      Like

      Comment by Brandee — March 23, 2013 @ 6:46 PM

      • I am currently on Zonisamide & have tried Topamax in the past but had a bad reaction to it. My migraines are triggered my colognes & perfumes those will instantly put me into an aura. Strobe lights, fire works, & flashing lights do the same.

        Like

        Comment by Brandee — March 23, 2013 @ 6:54 PM

  34. Well, the perfume companies won’t make any money on you!

    And happily the disco era is over!

    Just stay away from any flashing lights…

    Like

    Comment by Phylis Feiner Johnson — March 23, 2013 @ 7:25 PM

    • I wish that was all those are just my known triggers (lol) the aura comes on about 4-5 times a week & every day I have this pressure in my head that I described. Hopefully this New Neurologist will have some better suggestions. It’s the days that that the aura gets bad & turns into the seizure like attacks that I need to get under control I work & have kids. It’s hard when something controls your life.

      Like

      Comment by Brandee — March 23, 2013 @ 7:39 PM

      • My aura starts with fuzzy vision, & pressure in both eyes, then numbness on right side of face & down arm, slurred speech, confusion. Sometimes before the aura comes on I will mess my sentences up. There is no headache present @ the time aura begins other then pressure in my head that feeling is there every day. After aura starts sometimes I will go into this attack that starts with tremors, muscle spasms, I become unresponsive & eyes roll up. The attack can last for mins to having several in one day. I am confused for a few minutes after & very sore. Sometimes I get a bad headache & other times not @ all. Then I also have days were I just get the aura & headaches with sharp pains & sensitive scalp. I am Zonisamide, Amlodapine, & magnesium oxide. I am seeing a psychotherapist & she does not feel this is brought on by anxiety or stress induced.

        Like

        Comment by Brandee — March 24, 2013 @ 10:57 AM

  35. So sometimes you get the aura and not a seizure?

    Believe it or not, An aura is actually a a Simple Partial Seizure.

    In other words, the aura IS the seizure. It’s a small seizure that has not spread into an observable seizure that impairs consciousness and your ability to respond.

    You don’t lose consciousness.

    Something is going on in your brain. But it isn’t spreading.

    Sometimes this abnormal electrical activity tapers off. At other times, it spreads and leads to severe seizures.

    Auras can occur as a warning that a bigger seizure is about to happen. And sometimes they can occur just by themselves.

    You can get the full details at:

    Auras without Seizures

    http://epilepsytalk.com/2013/02/18/auras-without-seizures-2/

    I hope this helps…

    Like

    Comment by Phylis Feiner Johnson — March 24, 2013 @ 10:37 AM

    • So far every Neuro I’ve seen has diagnosed me with migraines with aura & all the meds I’ve tried have given no relief. I went 3 yrs with out this type of aura or attack had a baby & now they are back. Very frustrated that’s why I got the referral for a new Neurologist. The last one admitted me and gave me DHE & that didn’t even help.

      Like

      Comment by Brandee — March 24, 2013 @ 11:03 AM

    • I described similar auras to a neurologist, and she said they were complex partial seizures. It’s been going on for several years, but increased a lot in the past year, so I finally told a doctor about it.

      I’m 62, have always been athletic and in perfect health. Was in a car accident12 years ago, tho'; and besides being burned pretty badly, also had a head injury. Thought I had made it thru’, none the worse for wear and tear. Now this.

      So the neuro said my description of the episodes was “classic”, and ordered Dilantin, despite my protestations. (I just don’t wanna be on any meds.) But after what I’ve read here about that drug, I’m not going to out that stuff in my body.

      I’m thinking about continuing life without treating these things. However, the neuro said they could progress to full on seizures, so that’s kind of worrisome, especially to my wife.

      So all week I’ve been trying to wrap my mind around the idea thatI have this brain disorder. Wow.

      Like

      Comment by Steve — June 13, 2015 @ 2:39 AM

      • Traumatic brain injury from your car accident could be at the root of the problem.

        Not all head injuries, even severe ones, result in seizures. And seizures frequently occur in people who haven’t experienced head trauma.

        But close associations do exist between head trauma and seizures — as much as twelve times as opposed to someone without a head trauma.

        The difficulty of a diagnosis is that epilepsy does not typically develop immediately after head trauma.

        Studies suggest that approximately 6% of patients with epilepsy have TBI as the cause. It generally depends upon how severe the head trauma is.

        Traumatic Brain Injury and Epilepsy

        http://epilepsytalk.com/2014/04/13/traumatic-brain-injury-and-epilepsy/

        Like

        Comment by Phylis Feiner Johnson — June 13, 2015 @ 9:51 AM

  36. I’m thinking it could have something to do with your hormones.

    You know, hormones get all out of whack when you’re pregnant.

    I know someone who got MS after her pregnancy, yet I also know a person whose Fibromyalgia disappeared after pregnancy.

    So, the hormonal changes during pregnancy could have exacerbated your seizures.

    Also, as your last neuro suggested, it COULD be a thyroid imbalance.

    Did he give you a FULL thyroid panel of T4, T3 and TSH (Thyroid Stimulating Hormone)?

    Interestingly enough, Life Extension Magazine says of DHEA: “Some of the beneficial neurosteroid effects of pregnenolone result from an increased activity of brain cells.

    But in people with known seizure disorders (epilepsy), and in animal studies where the steroid is directly injected into the brain, this effect can lower the seizure threshold and make a seizure more likely.

    There are no published studies, however, suggesting an increased risk of seizures from pregnenolone supplementation in humans WITHOUT a prior seizure history.”

    (Pregnenolone like DHEA, is a naturally produced steroid hormone that acts as a “parent” to a variety of other hormones. And in those WITHOUT epilepsy, it can have many benefits, but it appears to have the opposite effect for you.)

    Like

    Comment by Phylis Feiner Johnson — March 24, 2013 @ 11:59 AM

  37. I have hypothyroidism which I did not have until after pregnancy. I currently have the mittens IUD which is getting removed Thursday. I know several people who also had Hypothyroidism while on the Mirena & after it was removed their thyroid went back to normal. I am on Levothyroxine for my thyroid . These Auras & attacks also happened after I had my 1st child so hormones are a factor.

    Like

    Comment by Brandee — March 24, 2013 @ 12:20 PM

  38. I’ve been having visual auras all my life but not as many as I’m having after going through menapause. I have 20 visual auras per day lasting up to a minute in duration and completely distorting my vision and can make me disoriented, anxious, and yes have headaches but no seizures. Just auras. I’m told I’m lucky. Oh yeah try to go anywhere you’re unfamiliar with and see how well you get around. What job do you do. How do you make a living and remain independent? This is all new to me. I’ve had epilepsy for 43 years and my seizures suddenly changed after menapause and coming off of dilantin. I’m off of dilantin because of the possible severe side effects it can have when you been taking it for more than 20 years. I’ve been on it for 35 years. Feeling a bit Betwicked, bewildered and blind. I’m living with my sister and her 2 kids. Not an ideal situation. For adults they’re not very supportive.

    Like

    Comment by Nicole — April 1, 2013 @ 1:39 PM

    • Nicole, I’d bet that your seizures are hormonal. Sort of like catamenial epilepsy in reverse.

      Catamenial Epilepsy – Do You Have It?

      http://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%e2%80%93-do-you-have-it/

      Some recommend Hormone Replacement Therapy, but that’s another kettle of fish which I’d go over carefully with your GYN.

      I wish I could be more helpful, but all research talks about is menopause and seizures…not AURAS and menopause.

      Sorry I couldn’t be more helpful.

      P.S. One shot in the dark is to have your thyroid levels checked.

      Insist on running a full thyroid panel of T4, T3 and TSH (Thyroid Stimulating Hormone). Most docs will only test your TSH and tell you everything is ducky if you don’t spell out the full panel requested.

      Your Thyroid…What Everyone with Epilepsy Should Know

      http://epilepsytalk.com/2011/06/01/what-everyone-with-epilepsy-should-know-about-their-thyroid%e2%80%a6/

      Liked by 1 person

      Comment by Phylis Feiner Johnson — April 1, 2013 @ 5:51 PM

    • Hello Nicole,
      I have been having some visually distorting episodes, although I’m thinking they are now Simple Partial Seizures after reading more about seizures verses auras. The visual distortion episodes are very upsetting, for me. My perception of my husband is altered for a period of time (about 30 minutes) and I no longer recognize him. He may flirt with me, but he seems to be a stranger and I am scared. Together, my husband and I are working on these new visual distortion episodes and I am supposed to tell him immediately so that he can talk me through them and he will stop any flirting with me so I don’t feel uncomfortable. I think it’s important to be open and honest as much as possible with your friends and family. It took a LOT of courage for me to tell my husband about these visually distorting episodes and how they made me feel, but I’m glad, finally did. Communication is key.

      Like

      Comment by Ona — April 2, 2013 @ 2:16 PM

      • I have a similar experience after my aura/attack I am confused & sometimes takes me about 20 minutes to remember people & things. I’m told they are migraines I’m on my 5th Neurologist it’s very scary. My auras start with my vision.

        Like

        Comment by Brandee — April 4, 2013 @ 3:22 PM

  39. Ona, thanks so very much for sharing your experience.

    It’s always comforting to know you’re not in this boat alone!

    Like

    Comment by Phylis Feiner Johnson — April 2, 2013 @ 2:28 PM

  40. Does anyone have any home or over the counter remedies for auras that help? I am waiting to hear back from the Neurologist with my next apt. I am getting them daily & it’s making it hard to function. Being a mom, wife, & I work. The blurry vision, pressure in eyes & head, scalp burns in back of head, tongue, right hand & right side of face goes numb. I get shaky & hot flashes. Frequent urinating. Then I pray it doesn’t turn into the tremors & muscles spasms where I become unresponsive. It’s so frustrating. I just want to get through my day. I went years before my daughter with out these & now that they are back I wish them away.

    Like

    Comment by Brandee — April 5, 2013 @ 10:28 AM

    • I know things could be worse & others struggle with way worse i try to stay positive. But feeling like this is hard. I miss time @ work & time with my family. Makes me feel like a bad mom & wife & I know that’s not true too. When I take over the counter stuff I end up with rebound headaches & the meds I’m on now I am not noticing any relief @ all.

      Like

      Comment by Brandee — April 5, 2013 @ 10:33 AM

  41. Well, two things. (I don’t remember if I said this before.)

    Try keeping a seizure, aura, headache daily diary. Write down your sleep patterns, what you eat and when, your daily activities (including emotional upsets), any triggers that you notice, the timing of the events(s) and duration.

    That will at least give your doc an idea of what you’re going through.

    It sure seems to me like it’s time for a change of meds. And maybe a change of docs?

    Like

    Comment by Phylis Feiner Johnson — April 5, 2013 @ 12:05 PM

    • P.S. Brandee, please don’t beat up on yourself.

      That will just add to your stress, which we know is the #1 trigger in the seizure parade!

      Like

      Comment by Phylis Feiner Johnson — April 5, 2013 @ 12:07 PM

  42. Thanks Phylis I am keeping a diary & this is a new Neurologist he’s just looking @ my records & history before I go back.

    Like

    Comment by Brandee — April 5, 2013 @ 12:38 PM

  43. Ok. You might find this article interesting:

    Secrets to Better Care from Your Doctor

    http://epilepsytalk.com/2010/06/13/secrets-to-better-care-from-your-doctor/

    I hope this doctor is a winner!!!

    Like

    Comment by Phylis Feiner Johnson — April 5, 2013 @ 12:55 PM

    • Thanks

      Like

      Comment by Brandee — April 5, 2013 @ 2:34 PM

      • Phylis,
        This whole site is so educational but this discussion has brought me so much peace. I just changed doctors so I can’t speak towards addressing this with him. But I have never had any of the doctors in the past explain auras so well. I have experienced different auras, the one I was most aware of before almost every seizure I have ever had is the change in my body temp, I always explain to people that it is what I would imagine a hot flash might feel like. :) I have also had that kaleidoscope thing happen for me, but it doesn’t follow with any convulsive seizure. I have always wondered if it was a small seizure as I have been told that I have seizures that I probably am not aware of because they are so small. Now it all pieces together after reading this though. Thank you.

        Like

        Comment by Jen — May 23, 2013 @ 10:06 AM

  44. Hi Jen,

    Welcome. And I’m so happy to be of help.

    I’m actually grateful for auras, because for me, they’re an effective “warning” signal.

    However, when you don’t pass out or have a convulsion, it doesn’t necessarily mean you’re not having a seizure.

    It’s probably a Simple Partial Seizure. (Like that kaleidoscope thing you experience.)

    The aura IS the seizure.

    An aura is actually a small seizure itself – one that has not spread into an observable seizure that impairs consciousness and your ability to respond. You don’t lose consciousness.

    In other words, something is going on in your brain. But it isn’t spreading.

    I hope I can be of more help…

    If you’d like to subscribe to Epilepsy Talk and receive the latest articles, simply go to the bottom of the right column and click on “Sign Me Up!”

    Like

    Comment by Phylis Feiner Johnson — May 23, 2013 @ 10:42 AM

    • That is very interesting . I wish there was something they give out like a pamphlet that tells us these things . I see a neurologist. The only tests they have done are the EEG , Cat scan, and an MRI . The EEG showed my neurons were constantly misfiring in areas they shouldn’t and that I seize while sleeping . I am suppose to do a 7 day in hospital stay EEG so they can study more things but just haven’t gotten it approved yet .

      Liked by 1 person

      Comment by jen — May 12, 2015 @ 11:20 PM

      • Please don’t put off the VEEG. It could help give you the answers you’re looking for.

        Like

        Comment by Phylis Feiner Johnson — May 13, 2015 @ 8:57 AM

  45. I am going to sign up for the news letter. I am 47 and just started having the auras two months ago, had my first seizure Tuesday. I will get the results from all the tests this Tuesday. I am dying of curiosity. I thought I was having panic attacks until Tuesday when I fell over and had a full blown seizure. I am so scared. Since that time I have had the weird side effect of everyone looking alike, lol. My “auras” are very emotional flashback of dreams or movies or something I feel like I should be remembering, I guess dejavu. It is such a crazy feeling. It lasted about a minute to two minutes then went away. It was happening once or twice a day and I would often vomit after. I kept going to the doctor and telling him and he finally started me on abilify and said I was having panic attacks. Odviously not.

    Like

    Comment by julia — May 26, 2013 @ 3:19 PM

  46. Julia, why don’t you try to keep a daily diary of your auras — describing them — and what you feel like before and after them.

    Could there be a common trigger? Maybe via the diary you can identify one or two. (Although, I admit I’m being a bit optomistic.)

    My triggers are stress, emotions, and depression. And I’m not a “hysterical” person.

    I take Lamictal which is a distant cousin of Abilify with Klonopin as an adjunt drug.

    Maybe this primer of epilepsy tests will help you understand what’s to come. At least, diagnostically

    Beyond EEGs…Diagnostic Tools for Epilepsy

    http://epilepsytalk.com/2010/09/13/beyond-eegs%E2%80%A6diagnostic-tools-for-epilepsy-2/

    Let us know what the conclusion is on Tuesday. I’ll be thinking of you.

    Like

    Comment by Phylis Feiner Johnson — May 26, 2013 @ 5:26 PM

  47. Reblogged this on TheWrightWayNYC and commented:
    This is something I get asked often, when doing presentations, and experienced possibly at least once.This is for your information.

    Like

    Comment by TheWrightWayNYC — June 2, 2013 @ 10:07 PM

  48. Thanks for the list! I didn’t know that Vertigo could be an Aura. I am still working on figuring out my auras, and thanks to this comprehensive list I think I may have found some of mine on here. :)

    Like

    Comment by sitagaia — June 3, 2013 @ 7:48 PM

  49. Maybe if you could keep a diary of how you feel BEFORE a seizure, you could identify some triggers AND auras…

    Like

    Comment by Phylis Feiner Johnson — June 3, 2013 @ 8:00 PM

    • Hi Phylis,
      Always wishing for the easiest answer but speaking to a psychologist friend when I heard about the possibility of another surgery and the psychologist said wait to hear what they say. Just recovering from gall bladder surgery that made me relax.

      I remember migraines in college and then they drifted away. I theorized the stress of school. I have had 2 brain surgeries. Worked, married and raised 2 wonderful young adults now..

      Challenges are given to us all the time. We have a good support group. Thank you Phylis!

      Like

      Comment by Toni Robison — June 3, 2013 @ 9:36 PM

  50. It’s great to hear from you, Toni!

    Oh, you’ve been through so much and still you remain positive and brave.

    (Gall bladder surgery made you RELAX?)

    I mean, comparatively speaking, I just had my first migraine last week and you’d think it was the end of the world. (Having zoom eyeballs didn’t help!)

    Next to you and so many, I am a MAJOR wuss.

    Even more reason to be grateful that we have one another and are able to help and cheer each other on.

    Like

    Comment by Phylis Feiner Johnson — June 4, 2013 @ 8:58 AM

  51. When I initially commented I clicked the “Notify me when new comments are added” checkbox
    and now each time a comment is added I get three emails with the same comment.
    Is there any way you can remove me from that service?
    Cheers!

    Like

    Comment by battlefield 4 free — July 5, 2013 @ 5:59 PM

    • You think YOU’VE got problems, I just got an email saying “Congratulations, you are now subscribed to epilepsytalk.com”!

      I’m subscribed to my own website?

      Geeze…

      Like

      Comment by Phylis Feiner Johnson — July 6, 2013 @ 5:04 PM

  52. I wish I had an intelligent answer for you Battlefield. (Just what everyone wants. To be barraged by emails.)

    But it doesn’t happen to me with my own website.

    I just get triples from other people’s correspondenses.) Go figure.

    Try unsubscribing and then resubscribe and see if that works.

    I hope so, because I don’t want to lose you!

    Like

    Comment by Phylis Feiner Johnson — July 6, 2013 @ 10:08 AM

  53. I am 57 and have had seizures (epilepsy) for close to 55 years. Mine started with encephalitis, then german measles which progressed to epilepsy. I don’t understand the whole process of one disease led to another. I had surgery at JH 15 years ago and have seizures, but few and far between. My seizures were right frontal and right temporal lobe. I still get auras, one about three months ago. I always swallow, smack lips and usually happens before or after a bowel movement LOL I think over my lifetime I have had just about every kind of seizure. Grand mal, simple partial, complex partial. I am on generic meds for keppra, lamictal and klonopin. Both keppra and lamictal have two different dosages for each time I take them. For instance at night I take 1250 mg of keppra, a 1000 mg tablet and a 250 mg tablet. Also for lamictal. I did lose my license about eight years ago for seizures for six months. I now have them back and am doing okay. I have some psychological problems from years of this. Being bullied in school and just feeling out of place around everybody. I still feel that way sometimes. I am also on meds for those problems also. One of my regrets is that I sleep so much from all the drugs I am taking. I could sleep 18 out of 24 hrs if allowed to some days. But that interferes with life also. But I could be worse, so guess I should just be happy I am alive. Thank you for reading this, I do feel a little better.

    Like

    Comment by Barbara Graser — July 8, 2013 @ 4:13 PM

  54. Wow, Barbara. It sounds like you’ve been through the mill.

    What I found in my research was:

    Viral encephalitis is a swelling of the brain and can cause seizures not only in the acute stage, but also increases the risk of late unprovoked seizures and epilepsy.

    http://www.ncbi.nlm.nih.gov/pubmed/18754956

    I didn’t find much on German Measles, but here’s what I dug up:

    Sometimes, epilepsy has been known to stem from head injuries, brain surgeries or even complications of earlier illness such as Rassmussen’s encephalitis and rubella (German measles).

    http://suite101.com/article/epilepsy-explained-a254895

    Was the surgery at JH successful? It sounds like it was.

    My auras were a disgusting metallic taste and my mouth filling with salivia. (Charming!)

    I take Lamictal and Klonopin which have been very good to me. My epilepsy is controlled.

    I’ve also been taking Effexor for years and years. (Clinical depression.)

    Happily, they have all worked for me.

    I consider myself one of the lucky ones!

    Like

    Comment by Phylis Feiner Johnson — July 8, 2013 @ 7:30 PM

  55. Having seizure for 35 years and auras as long and trying to explain to doctors what I felt was always a challenge. Most of the time I found myself talking on deaf ears or they would think there was a more psychological problem then a seizure problem. When I found this in a book written by William James called the Varieties of Religious experience first published in 1902. I could not believe what I was reading it was as if someone was writing exactly what I was feeling, expressing what I couldn’t and it had been written more than a hundred years ago.
    A more pronounced step forward on the mystical ladder is found in an extremely frequent phenomenon , that sudden feeling, namely, which sometimes sweeps over us, of having ‘been here before as if at some indefinite past time, in just this place, with just these people, we were already saying just these things. As Tennyson writes:
    “Moreover, something is or seems, that touches me with mystic gleams, like glimpses of forgotten dreams”
    Of something felt, like something here of something felt, like something here; of something done, I know not where; Such as no language may declare.”
    Sir James Crichton Browne said this was an enlargement of perception which seems imminent but which never completes itself. He also goes on to say that they are connected to the perplexed and scared disturbances of self consciousness which occasionally precede epileptic attacks.

    Like

    Comment by Christian Walbom — July 27, 2013 @ 1:31 AM

  56. Hi Chris,

    Perhaps that’s why in early times, epileptic seizures were considered to have a power and symbolism which suggested creativity or unusual leadership abilities.

    (Either you were a prophet or a witch!)

    You might be interested in this article:

    Déjà Vu or Prescience?

    http://epilepsytalk.com/2011/09/25/deja-vu-or-prescience/

    Like

    Comment by Phylis Feiner Johnson — July 27, 2013 @ 8:30 AM

  57. I’ve had epilepsy for over 30 years, I had depth electrode surgery and selective surgery a long time ago Although I never became part of the full time work force. I did get a bachelors (hon) degree. Lately I experienced 3 days of steady auras, then needed to sleep alot to catch up on my inability to properly sleep for 3 nights. It isn’t easy. I’ve received many judgements, including I cause my own epilepsy and if my religious faith were stronger, I’d be healed. Others can’t believe anxiety, itself can be an aura. Still, atleast my seizures are almost entirely partial in life.

    Like

    Comment by Tania — August 24, 2013 @ 7:16 PM

  58. My first response is “Judge not lest you be judged.”

    How can people be so stupid and ignorant? They probaly think that epilepsy is catching, too! ;-)

    You may not know this (I didn’t) but what you’re probably experiencing is a Simple Partial Seizure. The aura IS the seizure.

    An aura is actually a small seizure itself – one that has not spread into an observable seizure — that impairs consciousness and your ability to respond. You don’t lose consciousness.

    In other words, something is going on in your brain. But it isn’t spreading.

    You might find some familar simularities in this article:

    Auras without Seizures

    http://epilepsytalk.com/2013/02/18/auras-without-seizures-2/

    Like

    Comment by Phylis Feiner Johnson — August 25, 2013 @ 9:12 AM

  59. I want a hug Phylis!! I want to describe my challenge with epilepsy, but I dont know where to start! After reading how well people on this site describe their auras and seizures, it helps me evaluate my own better. It’s just so hard to explain to my husband, family and friends what’s going on in my head without sounding completely insane! I started having auras when I was 19 and it just kept getting worse, grand mals without warning or conciseness. The first neurologist diagnosed me with altered consciousness, and when it kept getting worse he passed me over to a seizure specialist. Ive been with them 2 years now and got the VNS surgery last year. My eeg caught 2 seizures while sleeping, one on each side of my brain. I have so many differet kinds of seizures so I don’t always know for sure what kind im having. When people ask what kind of seizures I have I don’t know what to say! I think the VNS has helped drastically with depression, but I still have seizures. Not as frequent as I used to tho. Gosh, I remember having 5 to 10 seizures a day and terrified to leave my bed! I have a 3 year old and didn’t have a single seizure while pregnant, even being on the lowest dose of meds! Now I’m 34 weeks pregnant. I went the first 6 months without a seizure or aura (longest I’ve ever gone was 2 weeks except first pregnancy) and now im getting them about 2-3 times a week. And they’re never the same! When I black out I get very disoriend. I’ve done crazy dances, said things that dont make sense, fall and hurt myself, just plain weird things! Usually lasting anywhere from 2-10 minutes. Ive heard people tell me stories of the things I do or mimic me. It’s so embarrassing! The auras always change except several things like my mouth numb with the metallic taste and drueling, and being terrified. Bur Its always a little different, each and every one. This morning I saw myself in the mirror and felt the aura so I went back to bed. The room was spinning and every time I would blink I saw myself in the mirror 3 times. I tried telling my husband but as soon as I would start to speak I forgot what I was going to say. It lasted 5 minutes or so, all day I’ve felt drained emotionally and physically. After having auras and seizures I feel guilty and upset for the person witnessing it. I always find myself apologizing for something I can’t help. Oh dear, I’ve been rambling on…..haha. I’ll stop now, thanks for reading, I wish you all the best!

    Like

    Comment by Sara Weber — September 2, 2013 @ 8:03 PM

    • I forgot to mention that I’m 25 years old now, that it started 6 years ago without any reasonable cause. Docs said MAYBE from head trauma when I was 16.

      Like

      Comment by Sara Weber — September 3, 2013 @ 2:59 AM

      • You deserve a great BIG hug for all you’ve been through.

        Let’s start with the head injury, because that’s a major player.

        Seizures may develop immediately after an injury to the brain or may develop in delayed fashion, showing up months or years after the initial trauma.

        Generally speaking, the risk of post traumatic seizures is related to the severity of the injury — the greater the injury, the higher the risk of developing seizures.

        Even mild to moderate injuries can result in seizures.

        It is thought that a head injury disrupts the pathways of the brain and that an epileptic seizure can be viewed as a sort of short-circuit of the brain’s electrical functioning.

        During the seizure the electrical fields in the brain are overloaded, resulting in seizures.

        The most commonly seen seizures related to traumatic brain injury are “generalized” seizures, which are also called “Tonic-Clonic” or “Grand Mal” seizures.

        People who have had head trauma are twelve times as likely as the general population to suffer seizures.

        Approximately 57% of head injured individuals developed epilepsy within one-year of injury.

        Longer onset epilepsy, beginning more than four years after the trauma occurs in 20% of patients who developed epilepsy.

        Now, let’s go on to pregnancy.

        There’s a little known fact that magnesium sulfate has been shown to prevent additional seizures in pregnant women.

        It’s a little secret that I sure didn’t know about…

        In recent years, doctors have disagreed about whether magnesium sulfate or more traditional anti-seizure medications (diazepam, phenytoin) should be preferred.

        Obstetricians favored magnesium, while neurologists favored the more traditional approach.

        However, a large amount of clinical evidence now conclusively supports the use of magnesium sulfate as the safest and most effective drug for preventing seizures in pregnant women.

        Overall, the data shows that magnesium sulfate can reduce the risk of having ongoing seizures by up to 66%.

        When compared to other anti-seizure medications, magnesium sulfate has been shown to be more effective, reducing the risk of other possible complications.

        As for the metallic taste in your mouth and drooling, it’s disgusting isn’t it? I had the same auras.

        As for jumbled words and sentences that you’re experiencing, cognitive training would be beneficial.

        It’s sort of training your brain and disciplaing it at the same time.

        Luminosity is the most popular one, but there are zillions of them out there.

        Take a look at: Memory games to boost your brain

        http://epilepsytalk.com/2012/03/12/boost-your-brain-with-these-fun-games/

        And as for the embarrasement, those who love you and care will understand.

        Remember: Pain is inevitable. Suffering is a choice.

        I hope this helps…

        Like

        Comment by Phylis Feiner Johnson — September 3, 2013 @ 7:57 AM

  60. Thanks for the reply, Phylis! I will check out the memory games for sure! As I said on another person’s post on here, I have a twin sister. Perfect in every possible way. I lashed out as a teenager for attention and got in several fights that led to mild concussions. I mellowed out a lot at age 16. I was emancipated, living on my own and paying my own bills! 3 years later the seizures began. About 1 of 10 seizures I have are grand mal. Unless you consider losing consciousness and doing embarrassing things like dancing or getting on all fours and digging like a dog ( I did that last week when I was getting clothes off the line) the disorientation is so embarrassing to hear about later! What do you think about those kinds of seizures?

    Like

    Comment by Sara Weber — September 3, 2013 @ 6:29 PM

    • Sigh. Sara, you’re still acting out and you’re still angry.

      Digging in the dirt has no eptileptic answer. And I feel so sorry for the aftermath of embarassment.

      What you need is to dig your way out of yesterday’s past and get some good old fashioned love today.

      Like

      Comment by Phylis Feiner Johnson — September 4, 2013 @ 8:35 AM

      • Yes…I do need to let go of the past and embrace the wonderful life I have NOW. Im trying….and I do understand and agree that I still hold on to the past way too much. I have come a long ways in the past year. I don’t feel as sorry for myself as much as I used to. I still have letters I wrote my mom from when I was a teen. I never gave them to her because I didn’t want to hurt her feelings. I just wanted her to love and accept me like she did my siblings. My doc said I should give her the letters, but she said she doesn’t want them. Maybe I should burn them….

        Like

        Comment by Sara Weber — September 4, 2013 @ 12:14 PM

  61. I have been a guinea pig with meds and none ever worked, which is why they wanted me to try the VNS. Im on Vim Pat and Potiga now, and im not sure if they’re helping or not. At least I dont have crazy side effects like all the other meds did!

    Like

    Comment by Sara Weber — September 3, 2013 @ 6:41 PM

  62. I am scared…I’ve been waking up and feelin like I’m sleeping but I’m still awake. I hallucinate, in my sleep my girlfriend tells me my body jolts fast and randomly for a couple mins then stops. I have been getting really bad migraines lately. Idk what this all means but I need help and understanding. Please and thank you. P.s this all started occurring within this past week and a half

    Like

    Comment by Ruben salazar — September 3, 2013 @ 7:24 PM

  63. Ruben, DON’T be scared, but DO get to a neurologist now.

    The migraines are probably related to the seizures, but you have to get diagnosed now so can come out of the dark.

    I know it’s scary (even seeing someone having a seizure is frightening), but once you know what it is, you’ll be able to deal with it.

    Anticipation is your worst enemy.

    Here’s a compilation by website forum members who have had positive personal experiences with docs over the years.

    2013 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

    http://epilepsytalk.com/2013/01/02/2013-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

    Start here and please let me know what happens.

    Like

    Comment by Phylis Feiner Johnson — September 4, 2013 @ 8:57 AM

  64. Sara,

    What about anti-depressants?

    Like

    Comment by Phylis Feiner Johnson — September 4, 2013 @ 12:14 PM

    • I’ve been on so many different anti depressants since age 13 and maybe it was and is me being stubborn, but none have seemed to work. The vns has helped so much! And for the first time in over 10 years I haven’t been suicidal and I actually have faith and hope that life is getting better…that I don’t people and substances to make it better. I read a book called 5 steps of self love and some days are harder than others to love myself. Especially when im having seizures. Its hard to not be scared when I’m in that state of mind, but the pity party doesn’t last as long as it used to. It’s been a slow working process, but I’m trying to understand and love myself. I’m not afraid to ask for help and seek knowledge. Before I got the vns life seemed pointless and routine..I was and sometimes still am my own worst enemy. Thank you for taking the time to listen. It feels good to get this off my chest..

      Like

      Comment by Sara Weber — September 4, 2013 @ 1:07 PM

      • Another cliche: you must first love yourself before others can love you.

        How can you even expect them to like you, if you hate yourself?

        There’s absolutely nothing wrong in asking for help. If not, we’d all be ignorant, living in unhappy bubbles by ourselves.

        It sounds like you’re being very pro-active and you’ve made tremendous progress.

        I’m so very proud of you.

        Like

        Comment by Phylis Feiner Johnson — September 4, 2013 @ 7:05 PM

  65. Thank you! You are wonderful!

    Like

    Comment by Sara Weber — September 5, 2013 @ 9:10 PM

  66. No. YOU are, for coming sooooo far!

    I’m so proud of you!

    Like

    Comment by Phylis Feiner Johnson — September 6, 2013 @ 10:20 AM

  67. My 19 year-old daughter had what appears to have been a simple partial seizure at about 3 this morning. She has long complained of auras. Is it possible that a feeling She could only describe as a sudden burst (she thought it was her appendix) with no lingering pain could be a part of the seizure? A localization of the seizure, maybe? I’m trying to decide how adamant I should be about seeing a doctor today.
    Thanks

    Like

    Comment by Deanne — September 24, 2013 @ 8:48 AM

  68. Go to the neuro as soon as you can.

    Your instincts are probaby right on the money.

    And if you go to the doctor, your daughter can be tested, diagnosed and (hopefully) properly medicated.

    Medication is sort of a crap shoot. You don’t always get the winning combination the first time. (But please try to stay away from Keppra. It has some nasty side-effects.)

    Keppra – What People Are Saying…

    http://epilepsytalk.com/2010/10/15/keppra-%E2%80%93-what-people-are-saying%E2%80%A6-2/

    Also, it’s important to keep a daily seizure diary recording your daughter’s behavior, eating and sleeping habits, activities before a seizure (like these suspected auras and possible triggers), time and duration of seizure and how she feels when she comes out of it.

    I think you’re being very smart in being pro-active. And I bet your instincts are right.

    (Who knows a child better than her mother?)

    Like

    Comment by Phylis Feiner Johnson — September 24, 2013 @ 10:33 AM

  69. My son started having seizures at 19, and he skipped his meds for 3 days so I went and picked up his script. He took his pill and about 5 mins later then he was trying to change a tire on his car and his left arm started jerking, what is that? And couldn’t control it.

    Like

    Comment by Mikki Williams — October 3, 2013 @ 3:11 AM

  70. Unfortunately, I think the “half live” of a drug lasts only 2 days.

    MY GUESS is that reintroducing the drug into his system gave him a jolt. (Literally.)

    That’s why compliance is so important. (Tell that to a 19 year old.)

    No kid wants to be different, no less take some drug because there’s something “wrong” with him.

    My mother used to stand there and watch as I took my meds. So, sadly to say, you’re not alone.

    Perhaps this will show him what happens when he doesn’t stick to his med schedule.

    Otherwise, he’ll feel kind of silly having to make you watch over his meds.

    Like

    Comment by Phylis Feiner Johnson — October 3, 2013 @ 9:54 AM

  71. Hello I am a 62 year old I had my 1st seizure a week tonight just sitting watching TV a Tonic Clonic seizure I was taken to hospital don’t remember any of that. Had a CT scan and MRI and was told I had a long time growing Benign brain tumour they can tell its long time growing because it calcified.apparently. The thing is since I been reading up I have found out about Auras well I have been having for several yrs now maybe 7 a year other times 1 a year Deja vu with nausea and having to lie down till it passes. So I am wondering if in fact I have been having Simple partial seizures all this time. I will of course ask this of my Neuro doc when I see him/her just wondering what your thoughts are.

    Like

    Comment by Valerie Perkins Crawley — November 3, 2013 @ 3:45 PM

  72. It’s imperative that a long term benign brain tumor be continually watched. And it could be the cause of your seizures.

    I would suggest to your neuro that you have in-depth testing to see what the actual cause is.

    In the meantime, please keep a Daily Seizure Diary, noting your sleep patterns, activities of the day, how you feel before a seizure (for auras AND triggers), the frequency of the seizures and the duration (if you can).

    Here’s a little primer on seizure tests…

    Beyond EEGs…Diagnostic Tools for Epilepsy

    http://epilepsytalk.com/2010/09/13/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy-2/

    Good luck…

    Like

    Comment by Phylis Feiner Johnson — November 3, 2013 @ 4:27 PM

  73. Thank you I will do all of the above and take a look at the link after all this is all new to me and you old pros know what you are talking about. Thanks again it’s good to know you are here.

    Like

    Comment by Valerie Perkins Crawley — November 7, 2013 @ 8:22 AM

  74. Valerie,

    We’re always here for you. All of us.

    That’s what Epilepsy Talk is all about.

    Like

    Comment by Phylis Feiner Johnson — November 7, 2013 @ 2:29 PM

  75. hello,
    I am not 45 and a half… (not 46 yet hehe) i wonder can you have epilepsy by just taking the medication. see, ten years ago for about a year i was having black outs/seizure, many times without any movement at all…. I was then diagnosed with brugada syndrome and was given a defib. Any way after 6 months of having the defib I had other blackouts etc but the difib did not provide its medication (shock)…. After some time they told me perhaps I had epilepsy and I was started on 25 ml twice a day of lamotrogine. Having taken this for a year I stilll get blackout seizures but these times with movement…. I tend to get perhaps about 4 or 5 a year…. my question is ?

    can taking medication for epilepsy give me epilepsy…. as , before i didnt tend to move now i do.

    thanks

    k

    Like

    Comment by Duncan Dunnit — December 22, 2013 @ 11:08 AM

  76. That’s a really good question. And I’m on the opposite side of the fence.

    I’ve been taking Lamictal for years. And it’s been great.

    I had a seizure, but it didn’t show up on an EEG or MRI. (Humbly speaking, I think they should have also done a VEEG.)

    Now they having me go to a cardiologist checking for a-fib, synocope, ataxia, etc.

    I’ll be wearing a heart halter (again I ask, why didn’t they do an VEEG first) and “hoping” it may be some problem with my heart.

    To me, it’s a bunch of crap. Looking for a culprit.

    Hey guys, why not some more epilepsy tests instead of shunting (no pun intended) me over to cardio!

    As for you, it could just be a case of incompatible meds.

    Have they tried any other AEDs? Or an add-on to the Lamictal?

    Like

    Comment by Phylis Feiner Johnson — December 22, 2013 @ 11:26 AM

    • I am also in Lamictal, I had Epilepsy Since I was 8 ( now 33 😕) but it was only petit mal. I used to take sodium valproate ( horrible drug with awful side effects ) . I grew out of it and then had my first grand mal seizure in 2010. They are now very severe I usually have three in succession to each other. and end up im hospital for 1 or 2 days.I started on 25mg morning and night and I’m now on 250mg day and night as all they do is just increase my meds every time I have a group of seizures. I don’t get immediate warnings but I have noticed the last few times that hours or a day before I get strange sensations which I assume are auras? I want to know if anyone else experiences such a time scale between having an aura till having a seizure? BTW don’t you think we are all amazing at how we cope with daily lives, working and bringing up children with this awful condition because I do! Much love xxx

      Like

      Comment by Susie Fahey — January 31, 2014 @ 4:09 AM

      • Believe it or not, an aura is actually a small seizure itself – one that has not spread into an observable seizure that impairs consciousness and your ability to respond. You don’t lose consciousness.

        In other words, something is going on in your brain. But it isn’t spreading.

        Sometimes this abnormal electrical activity tapers off. At other times, it spreads and leads to severe seizures.

        Auras can occur as a warning that a bigger seizure is about to happen. And sometimes they can occur just by themselves.

        A way to distinguish between the two is if you have no movement at all, then it’s considered an aura. If you have actual movement, then it’s considered a Simple Partial Seizure.

        Why don’t you try keeping a daily seizure diary? Note your sleep patterns, your activities and emotions during the day. How you feel (emotionally and physically) before a seizure, the seizure itself, and if you can, the duration of the seizure.

        On a separate page, note your auras. Write if there are any similar triggers, timing and similarity between the auras + seizure times.

        In other words, compare them.

        That might give you a better idea of your triggers and timing. And it may help to clarify things a bit.

        (And yes. We ARE amazing!)

        Like

        Comment by Phylis Feiner Johnson — January 31, 2014 @ 9:20 AM

  77. well, Phylis, the most notable thing about my seizures is fatigue and/or stress. this isn’t ALWAYS the trigger, but many times it is. but I cant really prevent those conditions so I try to be more aware of myself at those times.
    as far as aura’s go, I just take a mid day dose of my meds to try to prevent a full scale seizure. I normally take mid day dose, but sometimes I hafta take it early. (I know its not a word, but I’m a hillbilly)
    I’m just still trying to cope.

    Like

    Comment by Alan Bishop — February 24, 2014 @ 10:12 PM

  78. Hey Hillbilly, where do you live?

    I do something like you. I take my meds when I wake up, then another round (of some) at 5:00 and the last at bedtime.

    And if I’m really panicky, I’ll take a Xanax to get me grounded.

    Like

    Comment by Phylis Feiner Johnson — February 25, 2014 @ 9:23 AM

  79. I have several auras, but the aura I have most often, is one which has not been listed. I get a warm feeling which begins at my waist, and rises up my body, head, and radiates out my arms and finally my fingertips.

    Like

    Comment by Lisa Rooney — May 23, 2014 @ 3:22 AM

  80. Wow Lisa, that must be awful. How long does it last? Is it always followed by a seizure?

    As if the seizure wasn’t bad enough. You get this misery as a “bonus”. :-(

    Like

    Comment by Phylis Feiner Johnson — May 23, 2014 @ 10:48 AM

  81. Hi there, My one & only Feeling is a quick shimmering( like a chilling sensation) of my upper body & difficulty to think & speak which last for about a minute or two

    Like

    Comment by praveen — June 3, 2014 @ 8:31 PM

  82. The chilling, I think, is like a thermal body temperature change, getting ready for the seizure.

    As far as not being able to think and speak, well I’m afraid you’re in very good company! :-(

    Like

    Comment by Phylis Feiner Johnson — June 4, 2014 @ 11:07 AM

  83. Hi,
    I found this site accidentally and it got my attention. I have worse seizure like activity that occurs in may june the last few years. Had eegs which come back normal. I get very very mild eepisodes during rest of the year. I see a chiropractor and symptoms go away till it subluxates again. What I would like to know is if it is possible to have seizures just in that time frame. Also I am conscious during these episodes. And I get auras.

    Like

    Comment by Anita — July 3, 2014 @ 3:32 PM

  84. Well Anita, I know this sounds weird, but the only thing I can think of is that some people get seizures from a change in atmosphere and/or a change in barometric pressure.

    Atmospheric Conditions

    Changes in air pressure or any sudden action, (like arising from a prone position too quickly), can act as an instant stressor. Like taking off or landing in an airplane…going up or down on a fast elevator or escalator…

    Barometric Pressure

    Weather differences such as sudden changes in temperature, dark skies, thunder, or bright, hot sunlight and humidity may be a definite trigger for some.

    Weird Epilepsy Triggers…

    http://epilepsytalk.com/2011/09/19/weird-epilepsy-triggers%E2%80%A6/

    Your chiropractor sounds very helpful. Does he/she have any other suggestions?

    Like

    Comment by Phylis Feiner Johnson — July 4, 2014 @ 9:54 AM

  85. Wow! I counted at least 9 that I’ve experienced over the years.

    Like

    Comment by charlie — July 22, 2014 @ 9:13 PM

  86. Uh hi, my name is Owen and I have grand mal seizures, I’ve had them since I was a baby and doctors still don’t know the actual cause is and why I have them (I’m 19 now). I do have an aura though, pretty strong one at that, usually I feel a pressure build up feeling in my head and I produce more saliva along with the Déjà vu . That’s days before the seizure though and I take precautions to deal with it, as in getting proper sleep and eating right – 3 meals a day and healthy food. As of now, I’m not taking medications, due to the fact that doctors have no idea what causes my seizures and them having the “Try this and see” outlook on it and then having seizures because of the meds. I am drinking Noni Juice though and it is helping for now. I tried to explain to my last doctor about how strong my aura can be (Days before the actual seizure) but he had no account of anyone with that kind of notice and took no charge in it..I stopped seeing that neuro. For now I’m just eating and sleeping right while drinking my juice once a day, I feel alright for the time being. I do my best to keep my stress down and make sure to laugh because somehow it helps, not sure how but it does. It’s nice to talk about this cause really it feels like I’m alone, I’ve only met one person with seizures before but to see all of you makes it that much easier to deal with and talk about, thanks for being you.. in a good way haha :)

    Like

    Comment by Owen — August 3, 2014 @ 4:28 PM

  87. So, your doctor is a loser and they don’t know what kinds of meds to put you on. Nice combination!

    Well, we all know that laughter is the best medicine and I salute your attitude. But I think you probably need more than that and Noni juice.

    To start with, here’s a link to a 2014-2015 Comprehensive List of GOOD Neurologists… Epileptologists…Neurosurgeons and Pediatric Doctors

    http://epilepsytalk.com/2013/01/02/2014-2015-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors-2/

    It’s a compilation by website forum members who have had positive personal experiences with docs over the years.

    Second, maybe if they did some in-depth diagnostic testing, they might discover what’s really going on. (What a concept!)

    Take a look at Beyond EEGs…Diagnostic Tools for Epilepsy

    Plenty of us have heard: “Your EEG is normal. You’re fine..” (“It’s all in your head?”)

    I know of people who have had 5 EEGs, only to be properly diagnosed when they finally had Video EEG Monitoring.

    So if someone is trying to pass you off or is ignoring your symptoms, perhaps you should become a little more familiar with your diagnostic options…

    http://epilepsytalk.com/2010/09/13/beyond-eegs%E2%80%A6diagnostic-tools-for-epilepsy-2/

    Keep taking good care of yourself…but please, find a doc who has a brain.

    Like

    Comment by Phylis Feiner Johnson — August 3, 2014 @ 4:45 PM

  88. I’m experiencing this right now. I have a shimmery tunnel visioned aroura a With bright blobs of lights and my head is pounding.

    Like

    Comment by Bri — August 11, 2014 @ 10:39 AM

  89. Oh Bri. I wish there was something I could do to make the misery stop… :-(

    Like

    Comment by Phylis Feiner Johnson — August 11, 2014 @ 12:37 PM

  90. My daughter complains of her throat “hurting” frequently most often this doesn’t evolve in a seizure but a nap! periodically it has become an indication of oncoming seizure .She has partial tonic/ clonic due to hydracephalus. She has been on carbamezapine since she was 3.
    She is 8 years old- I cannot find anything on sore throat/ indigestion/ heartburn etc that connects to epilepsy! Does anyone know if there is a connection??? Ty

    Like

    Comment by Jeannine — August 21, 2014 @ 4:18 PM

  91. Jeannine, I know from personal experience that my mouth would fill up with saliva with an awful metalic taste BEFORE a seizure.

    Afterwards, I would have a sore throat from all that swallowing and be exhausted enough to need a nap.

    I don’t know if this helps you at all. I sincerely hope it does.

    Like

    Comment by Phylis Feiner Johnson — August 21, 2014 @ 4:38 PM

  92. My daughter is 18 years old She had her first seizure when she was 14 and was diagnosed with polymicrogyria. She has been able to identify an “aura” before a seizure that sounds like loud machinery in her head. FYI – She can have the machinery aura and not have a seizure, she said it is just much more intense and louder before a seizure. Her pediatric neurologist recently ordered a sleep deprived EEG in hopes of seeing seizure activity during a time that she hears these noises. She had some mile noises, but they couldn’t be linked to seizure activity. Does anyone experience sounds like this?

    Like

    Comment by Kari — September 1, 2014 @ 12:54 AM

  93. Actually Kari, she’s probably having a Simple Partial Seizure.

    An aura is actually a small seizure itself — one that has not spread into an observable seizure that impairs consciousness and your ability to respond. You don’t lose consciousness.

    In other words, something is going on in her brain. But it isn’t spreading.

    Sometimes this abnormal electrical activity tapers off. At other times, it spreads and leads to severe seizures.

    Auras can occur as a warning that a bigger seizure is about to happen. And sometimes they can occur just by themselves.

    I hope this helps.

    Like

    Comment by Phylis Feiner Johnson — September 1, 2014 @ 10:26 AM

  94. I have been having Auras for a week now and I am waiting to see my doctor. I am taking more of my medicine but it doesn’t seem to be helping. Do you know of any natural remedies or foods to eat that may help?

    Like

    Comment by Michael Neubauer — September 6, 2014 @ 11:37 PM

  95. Michael, how did the auras suddenly start? Have you noticed any triggers?

    Common Epilepsy Triggers

    http://epilepsytalk.com/2010/03/02/common-epilepsy-triggers/

    You know, not to scare you, but an aura can actually be a small seizure itself — one that has not spread into an observable seizure that impairs consciousness and your ability to respond. You don’t lose consciousness.

    In other words, something is going on in your brain. But it isn’t spreading.

    Sometimes this abnormal electrical activity tapers off. At other times, it spreads and leads to seizures.

    Auras can occur as a warning that a bigger seizure is about to happen. And sometimes they can occur just by themselves.

    As for foods there are both foods and supplements that can at least be good “brain food”.

    Brain Food for Your Health…is a listing and explanation of different vitamins and supplements.

    http://epilepsytalk.com/2011/06/21/brain-food-for-your-health%E2%80%A6/

    Foods That Fight Stress…talks about different foods themselves.

    http://epilepsytalk.com/2010/06/20/foods-that-fight-stress%E2%80%A6/

    And if your doc does want you to see a neurologist, this list might be helpful to you.

    It’s a compilation by website forum members who have had positive personal experiences with docs over the years.

    2014-2015 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

    http://epilepsytalk.com/2014/08/06/2014-2015-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors-3/

    I hope this helps in some way. Best of luck.

    Like

    Comment by Phylis Feiner Johnson — September 7, 2014 @ 11:20 AM

  96. Hi everyone! New to the post. Last week was my 2nd grand mal, at least that I know of while sleeping. Here are some symptoms I’ve been having the last year and a half while off of my lamictal: extreme nausea, vomit while sleeping, jaw clenching with broken teeth, biting the side of my mouth while sleeping, headaches, feeling of anxiety and fear combined, driving and realizing I have no clue where I am on my route to work ( so I have to look for landmarks so I know where I’m at!) my grandmas last week was an extreme combination of most of the things listed. I’m not sure if I’m going crazy, but that is how I’m starting to feel! Can anyone with epilepsy relate to these? Are they auras?

    Like

    Comment by Jessica — September 16, 2014 @ 7:28 PM

  97. What are you taking instead of Lamictal? (Something, I hope!)

    Have you had any diagnostic testing?

    Beyond EEGs…Diagnostic Tools for Epilepsy

    http://epilepsytalk.com/2010/09/13/beyond-eegs%E2%80%A6diagnostic-tools-for-epilepsy-2/

    Bloodwork?

    ANYTHING?

    I’d say someone has dropped the ball.

    If you ARE looking for a new neuro or a referral, this list may help. It’s a compilation by website forum members who have had positive personal experiences with docs over the years.

    2014-2015 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

    http://epilepsytalk.com/2014/08/06/2014-2015-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors-3/

    Please, please, please tell me what happens. There’s no reason in the world for you to suffer this way.

    P.S. I make plenty of typos. Spell check is my best friend. But sometimes, even that doesn’t help. :-)

    Like

    Comment by Phylis Feiner Johnson — September 16, 2014 @ 8:21 PM

    • Phylis I honestly lost insurance, got divorced and basically considered the seizure to be a result of an abusive marriage, but after last week I am taking this very seriously and I’m honestly a nervous wreck! Now that I’m remarried my new insurance kicked in literally days before my seizure. I actually I thought that all of this was anxiety. I’ve had blood work in the past and an EEG that showed abnormal brain activity. Other than that it never seemed to be such a big deal until I looked at last week and the last year and and half.

      Like

      Comment by Jessica — September 16, 2014 @ 8:27 PM

  98. I can certainly see why seizures weren’t at the top of your mind while you were going through that nightmare.

    But now, it’s time to take care of YOU.

    Here’s the beginning of a plan…

    1. Find a neuro.

    2014-2015 Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

    http://epilepsytalk.com/2014/08/06/2014-2015-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors-3/

    2. If you can’t find a doc from that list, try a leading hospital. (Many teams of neuros can be found there.)

    2014-2015 Top Ranked Neurology and Neurosurgery Hospitals

    http://epilepsytalk.com/2014/07/27/2014-2015-top-ranked-neurology-and-neurosurgery-hospitals-3/

    3. If the doctor is impatient with you or doesn’t want to hear your story, high tail it out of there!

    4. On the other hand, it’s up to you to be PREPARED.

    Secrets to Better Care from Your Doctor

    http://epilepsytalk.com/2010/06/13/secrets-to-better-care-from-your-doctor/

    5. Keep a Daily Seizure Diary. Note your sleep patterns and activities, your day (physical and emotional), how you feel before a seizure (auras? triggers?), how you feel afterwards and, if possible, the duration of your seizure.

    6. Next, you’ll probably have an EEG and once the results are read, you’ll be put on meds.

    7. Tell the doc how the Lamictal worked and why. (I’ve been on Lamictal for years and its worked wonders for me. But, I’m NOT you.)

    8. You’ll have a follow-up and be sure to tell the neuro all about how your med(s) are working. If things are going well, he/she will probably move you up a notch or two on your meds or else try another one.

    TAKE ACTION! I know you can do this Jessica. You just need the right resources.

    I have faith in you. Especially now that you’re addressed the problem and are ready to take a positive step.

    Good luck and tell me how you’re doing. Ok?

    Like

    Comment by Phylis Feiner Johnson — September 17, 2014 @ 8:28 AM

    • I’m sure you’ve heard this before, but thank you! I’m so lost and work is very offended by my need to take time off, and my poor hubby is concerned. Thank you and I have an appointment tomorrow and hopefully will be able to change my neuro to someone in Duluth area. I’ll keep you updated.

      Like

      Comment by Jessica — September 17, 2014 @ 6:30 PM

  99. I had a situation of a onset of a seizure, our EMS came and I explained what was going on, my daughter was there and she said that I was diagnosed with Epilepsy. The EMS left and then it came down to being a witness in court, and the EMS stated that there was nothing wrong with me? That scares me to think that if me or anyone in my was untreated like that from the Police or EMS. I feel that this diagnosis of Epilepsy should be taught for those to have a better understanding and understand the different kinds of seizures that can be involved. It could save a life.

    Like

    Comment by Rhonda McCrory — September 22, 2014 @ 3:07 AM

  100. WHY A WITNESS IN COURT?

    As for awareness and education, it’s frighteneing how few of the PUBLIC service sector know anyting about epilepsy.

    If it’s any comfort, the EFA has a full press plan, going around to schools, police departments, firefighters, even hospitals, with a program teaching about what epilepsy is and what to do in the event of a seizure.

    But, as you can imagine, that’s a lot of ground to cover.

    Like

    Comment by Phylis Feiner Johnson — September 22, 2014 @ 9:34 AM

  101. My daughter has epilepsy and it’s uncontrolled. She got her diagnosis at 8 yrs old. She has had a hard time with her diagnosis and talking about it. I think this blog would be good for her. It has already explained some things to me.

    Like

    Comment by Louise — September 24, 2014 @ 12:30 AM

  102. Louise, you and SHE might find this article interesting…

    Expanded Guide to Epilepsy Books for People of All Ages

    http://epilepsytalk.com/2014/08/31/expanded-guide-to-epilepsy-books-for-people-of-all-ages/

    I know it took me a looooong time to get comfortable with having epilepsy, no less talking about it.

    Epilepsy was my “dirty little secret”.

    But, in time, when I became more comfortable in my own skin, I began talking about it — at first only to the people I knew very well.

    And then, as you can see, the world at large. :-)

    Give her time — and your support — she’ll get there. It just takes a while.

    Like

    Comment by Phylis Feiner Johnson — September 24, 2014 @ 9:56 AM

    • I’ve always been frustrated by the failure of my neurologists to describe what epilepsy was, or even to use the word epilepsy. I always thought they didn’t care enough to take the time to explain my condition to me. I always thought that the only type of seizure was a tonic-clonic or grand mal seizure. I knew nothing about complex partial or simple partial seizures. Only recently have I come to realize that a lot of what I have experienced in my life were symptoms or manifestations of partial or focal seizures.

      Like

      Comment by Brian W. Refford — October 4, 2014 @ 2:17 PM

  103. Well cheer up Brian. Now there’s a whole litany to describe the “E” word…

    “Even if you do have epilepsy, it doesn’t necessarily mean you know all the lingo. (I didn’t!) So here are some definitions of medical terms related to epilepsy…”

    Epilepsy Glossary — 100+ Terms Defined

    http://epilepsytalk.com/2014/07/18/epilepsy-glossary-100-terms-defined/

    Like

    Comment by Phylis Feiner Johnson — October 4, 2014 @ 2:30 PM

  104. This is very similar to a migraine aura. A day or two before a migraine, I too get either really silly or really depressed. The aura I get usually starts with not being able to see things and feeling
    Fear and anxiety. The vision in both eyes is blocked like there is a hole in them. Then I see shimmering lights, that take up my field of vision until it becomes almost a black hole. I have difficulty speaking, one side of my body goes numb and my head twitches. I also throw up sometimes. I have auditory issues too, everyone sounds like they are talking to me through a tunnel. At the end of the episode I barely remember what happened. It’s pretty scary. I do not usually get a headache either, just the aura. I’ve been getting these since I was 7.

    Like

    Comment by Kara — October 26, 2014 @ 8:50 PM

  105. Hi Kara,

    You know the symptoms and effects of migraines and seizures are very much the same.

    In one epilepsy study, about 16% of those people who had migraines also experienced epileptic seizures before, during or after a migraine.

    You might consider it a significant “overlap” of both conditions.

    Interestingly, both share common treatment options as well. The goal is to eliminate the events and prevent side-effects, too. So, when a person has both epilepsy and migraines, it is logical to try to “consolidate” treatments and use one medication for both conditions.

    Research shows that Depacon (Valproate) and Topamax (Topiramate) are effective in treating migraines and epilepsy. And each has FDA approval for treating them together. Depakote (Divalproex Sodium) also works for both, creating a therapeutic “two-fer.”

    There are also several other anti-epileptic drugs that have also been shown to lessen migraine headaches – such as Neurontin (Gabapentin), Keppra ( Levetiracetam) and Zonegran (Zonisamide). However, the dose of AEDs in the treatment of migraines is usually lower than that used for epilepsy.

    Take a look at Epilepsy & Migraines — Kissing Cousins

    http://epilepsytalk.com/2010/09/12/epilepsy-migraines-kissing-cousins/

    I think you’ll find a resemblance…

    Like

    Comment by Phylis Feiner Johnson — October 27, 2014 @ 9:05 AM

  106. Thank you for the information. It helps my daughter and I.

    Like

    Comment by Yolanda — December 1, 2014 @ 2:19 AM

  107. Glad I can help you in some small way…

    Like

    Comment by Phylis Feiner Johnson — December 1, 2014 @ 9:13 AM

  108. Hi Phylis. I’m excited to have found your site. I have a 5-y-o son who has been diagnosed just last week with partial complex epilepsy. (we also have a son who is ASD high spectrum). I was asked about any family history of epilepsy and I said no. However, I did have what I thought was a seizure a few months ago in the bathroom. or maybe it was an aura (I had never heard of these things). But it was like, I was standing next to the sink, I was staring at nothing maybe the wall, then I heard a buzzing in my ears and my body couldn’t move, and I think my leg or arm was shaking. This went on for a couple of minutes. Then it stopped. I knew it was something strange. The only other things that have ever happened to me along these lines were when I was younger I got some deja vu and a lot of jamais vu and a lot of that derealization (feeling detached from my body or look in the mirror and feel like it is someone else) I would quite often zone out in the bathroom like a blank stare and sit there like that for many minutes. It only happened when I was alone and often in the bathroom. There was no anxiety though like i have heard with auras. Does this sound like they could have been auras or light absence? I know a lot of kids though have no family history. Thank you and thank you for the public awareness you are bringing.

    Like

    Comment by kinneret — January 8, 2015 @ 1:02 AM

  109. Hi Kim,

    Well at least I’m not crazy.

    I had strong prescience when I had absence seizures as a kid. (I’ve outgrown my epilepsy and the prescience has STOPPED!)

    Much like you, not much would happen, then all of a sudden, I would have a vision of the future. POW!

    The only problem was that I didn’t know WHEN it would happen. Sometimes two days, weeks, months, etc.

    One weekend, at the time, I begged my boyfriend not to go skiing. Finally he did end up going, but his friend bailed.

    Marshall ended up getting into a car wreck and the passenger was destroyed. I was hysterical.

    But usually the prescience was not too reliable, even when I had absence seizures. (Plenty.) And when my absence seizures stopped (they’re under under control now), so did the the prescience.

    What do you think Kim? Do you think age could have been a factor? (I had mine in my teens and twenties, when my seizures were most active.)

    Like

    Comment by Phylis Feiner Johnson — January 8, 2015 @ 10:00 AM

  110. Before my daughter has one of her seizures or right afterwards all she can tell us is that she feels funny but she can’t describe anything else. But she’s only 10 and still learning to tell the difference with things.

    Like

    Comment by Lora Ronfeldt — February 2, 2015 @ 2:14 PM

  111. Hi Lora, You’re right. It does take a matter of sophistication to be able to pinpoint exactly how you feel.

    Yet, sometimes I feel “funny” and just can’t put my finger on it.

    There’s a wonderful book out (which might be too babyish for her) called Mommy, I Feel Funny! A Child’s Experience with Epilepsy by Danielle M. Rocheford (Author), with Chris Herrick (Illustrator)

    It’s based on a true story, and introduces the reader to Nel, a little girl who is diagnosed with epilepsy.

    The story takes you through the days following Nel’s first seizure.

    Suddenly, Nel and her family are faced with thoughts, fears and emotions that come with the discovery, understanding and acceptance of epilepsy.

    Through simple but thorough explanations, we learn what Nel experiences when she has a seizure, visits her doctor and has testing done.

    Every child with epilepsy and parent of a child with epilepsy should read this story. It’s $12.95 at http://www.amazon.com/

    And if you’re interested in any other books, take a look at “Expanded Guide to Epilepsy Books for People of All Ages”

    https://epilepsytalk.wordpress.com/2014/08/31/expanded-guide-to-epilepsy-books-for-people-of-all-ages/?preview=true&preview_id=7155&preview_nonce=278d4697d2

    I hope this helps!

    Like

    Comment by Phylis Feiner Johnson — February 2, 2015 @ 4:27 PM

  112. Recently started having seizures at age 19. One of the firsts i was in a car and I just felt like I was going to throw up, then I got insanely light headed, projectile vomited and blacked out. Friend I was with asked what happened and I really didn’t have an answer cause I didn’t know. Couple months later I wAs at a friends house when all of a sudden I felt the same feeling in my head and stomach. I knew I was going to have a seizure so I went outside with my gf. Right before it happened I lost control of my arms and legs. My right leg started moving involuntarily as well as my arms were going up and down almost like I was doing the robot then I passed out. Now it’s been about a week and I had another one while I was driving. Just about to pull out of a parking lot when I got my “aura” again and parked my car. For a few minutes I was taking deep breaths and telling myself it wouldn’t happen.. But it did. After this one though, it felt almost like it was going to happen again, then I lost vision in my right eye… Craziest thing I’ve ever experienced. Was literally thinkin I went blind and wouldn’t be able to see. Headed to doctors in fees days, hope it goes well.

    Like

    Comment by Tom — February 4, 2015 @ 8:15 PM

  113. OMG, Tom. Has all this been happening recently? Have you been diagnosed? Are you on any meds?

    PLEASE let me know what happens. This sounds pretty scary. :-(

    Like

    Comment by Phylis Feiner Johnson — February 5, 2015 @ 9:09 AM

  114. Hi all im new to this an need some help i was diagnosed with epilepsy an very young i have 18 small fits a day at the minute an in an out if hospital im also in a wheelchair an have many disabilities i all have a new born i got told id never be able to have x anyway ive started having afew problems an wounderd if any one has experience this ive lost the use to talk it sounds like ive had a stroke, im also having stutters an tremmers witch is getting worse im also shakeing all the time an need to drink from a baby bottel cause i cant hold a cup hope someone can help thanks xx

    Like

    Comment by kerry — March 13, 2015 @ 5:38 PM

  115. Kerry, when was the last time you were evaluated by a neuro? What meds are you on? Were you tested for a stroke? Because you may very well have diagnosed yourself.

    But don’t play doctor. Go to one.

    Below is a compilation by website forum members who have had positive personal experiences with docs over the years.

    2015 Comprehensive List of GOOD Neurologists…Epileptologists… Neurosurgeons…and Pediatric Doctors

    http://epilepsytalk.com/2015/02/11/2015-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

    I hope this helps…

    Like

    Comment by Phylis Feiner Johnson — March 13, 2015 @ 6:46 PM

  116. High to my all my family who has been hurt by this monster who’s name is Epilepsy. I am on meds but my seizures are getting longer and more often. I might be going to the hospital again to be rewired to a machine that catches my seizures, this helps them (doc’s) w/ dif meds. So will I will . Pray Pray I do believe

    Liked by 1 person

    Comment by shena — March 22, 2015 @ 4:00 PM

    • You are in our hearts souls. What procedure are you having done and when?

      Will you let us know the outcome?

      Best of luck from everyone in our Epilepsy Talk family.

      Like

      Comment by Phylis Feiner Johnson — March 22, 2015 @ 6:41 PM

    • My aura one day which I was not aware of but my teenagers were was all day, I was watering, doing laundry , doing everything but confused. I found my self in an ER room. I told the nurse my daughter was injured in soccer. My son sat me down and my daughter was asked a few questions. I found out later because I was going in and out of seizures all day that generally not my normal they transferred me to my Epileptologists hospital. My sodium was low, dehydrated and observed via EEG unit and medication increased and it has not happened again. I was having a status attack I do not remember much of the day at all. The following days were vague but clearer.

      Like

      Comment by Toni Robison — March 23, 2015 @ 8:14 AM

  117. I would assume the low sodium and dehydration were the problem. The dehydration was obviously the main culprit, followed by the low sodium.

    But I wonder, do you have regular blood level cheks? Because the low med level should have be discovered.

    I remember during my last blood check, they discovered that my meds (Lamical) were at 50 per cent of the recommended range!

    Like

    Comment by Phylis Feiner Johnson — March 23, 2015 @ 1:00 PM

  118. Ive had two siezueres in the last four years am I epaleptic

    Like

    Comment by shane — March 23, 2015 @ 7:19 PM

  119. Shane, do you have any triggers that you know of?

    Any type of warnings?

    Like

    Comment by Phylis Feiner Johnson — March 23, 2015 @ 7:51 PM

  120. So the past few days I’ve had some crazy incidents at first I thought I was perma tripping but I did some tea search and it led to this and I would appreciate some of your thoughts on this but I went up to my mirror and my one eye was acting up the right one and I got really close and just looked through my right eye what I saw was basically my normal face but around it was like it was glowing it only shinned about a half inch but when I looked away from that point my eye had completely dialated there was no color in both eyes then my heart started pounding really fast my knees got weak my breathing was heavy and it seemed all I could focus on was my heart beat or it was gonna beat to fast and I was gonna have a heart attack the next day I had one of my experienced tripper friends come over and we smoked a bowl and I told her to come to the mirror with me I repeated the same steps over and it happened exactly the same and now it’s like from being scared of that I’m freaking myself out and I thought about checking myself into a hospital just cause this shouldn’t be happening plz help! This is a very serious matter to me

    Like

    Comment by Chaz — March 26, 2015 @ 3:00 PM

  121. Chaz, were you tripping or doing something else that could put such a strain on your heart?

    Are you on any antiepilepsy drugs? If so, which ones?

    Like

    Comment by Phylis Feiner Johnson — March 26, 2015 @ 3:32 PM

  122. I’ve had epilepsy since I was 19. Been given so many different medications throughout the years & even a bit of my brain physically removed. Strangely enough having the brain taken out has sort of helped, even though it hasn’t stopped my epilepsy. It has let me know when I have a seizure coming up. I get a smell & a disgusting taste in my mouth & all of a sudden my heart is pounding & I can’t speak properly (in my head it sounds correct) but to whoever I’m talking to, to let them know what is going on or how I’m feeling doesn’t sound like a normal sentence. I have been told that I sound like I’m talking backwards & sometimes raise issues that relate to nothing I’ve ever done or heard about in my life! This all sounds silly, especially as I am reading it out to myself, but I have no idea what I can do about it! So many meds, so more weight, so many tests & the amount of pride that has been lost is unspeakable. I don’t care that people feel sorry for me when I tell them I don’t want a drink, they always feel sorry for you when you are still out to enjoy yourself even when they talk about their happy lives & no problems they have in their lives. But people need to stop treating you like a person who needs careful attention all the time…I am still normal. Just a bit of all areas there!

    Like

    Comment by JODI RICHARDS — April 23, 2015 @ 9:23 AM

  123. Welcome to the world of disgusting tastes in your mouth! :-( (Me too.)

    Seriously, you might want to consider the Modified Atkins Diet (MAD) which is a user-friendly anti-seizure diet.

    This modified version of the popular high-protein, low-carbohydrate Atkins Diet can significantly cut the number of seizures in adults with epilepsy. And it has shown promise for seizure control in children too, offering a new lifeline for patients when drugs and other treatments fail or cause complications.

    It’s a less restrictive, higher in protein and carbohydrates, a dietary therapy for epilepsy for those who would otherwise use the Ketogenic Diet. So far, it’s been used and researched for the past five years with outcomes similar to the Ketogenic Diet. Recent data has also suggested this valuable new therapy leads to a rapid seizure improvement when effective.

    It’s not exactly known, how ketones reduce and eliminate seizures, or why the diet works for some and not others. Researchers are especially interested in why some people remain seizure-free after discontinuing the diet. Further research is needed, since the Modified Atkins Diet has only been used since 2004.

    But it’s promising to note that clinical research did show that about half the patients experienced a 50 percent reduction in the frequency of their seizures by the first clinic visit. About a third of the patients halved the frequency of seizures by three months. Side effects linked with the diet, such as a rise in cholesterol or triglycerides, were mild.

    In general, the Modified Atkins Diet is recommended for: adults, adolescents, and younger children with difficulty staying on or starting the Ketogenic Diet…families with limited time…those lacking financial resources to cover the costs involved with the Ketogenic Diet…and patients at centers with limited dietitian support.

    Good news: The Modified Atkins Diet doesn’t deprive you of rich foods like butter, peanut butter, mayonnaise, oils, cheese, bacon, eggs, hamburger, and whipped cream. The diet doesn’t cause people to become overweight, and overweight people often lose weight. But daily supplements are necessary to replace vitamins that are missing in the diet. Suggested vitamins include: Vitamin B-1…Vitamin B-2…Vitamin B-3…Vitamin C…Folate…Vitamins D…and E. Check your multi-vitamin to see if ALL of these are included.

    Although there are considerably fewer side effects than with drugs, the Modified Atkins Diet for seizures can cause dehydration, constipation and, occasionally, kidney and gall stone complications. Side-effects can also develop in those who are unable to digest large amounts of fat. As with all treatments, initial evaluation and careful monitoring by a neurologist, and a nutritionist are all mandatory.

    We do know that the Modified Atkins Diet for seizures is as effective, less restrictive, and far easier than the Ketogenic Diet. It’s an inexpensive alternative treatment option with few side-effects that often works when all else has failed. And that is good news for all of us who have tried previous diets and given up hope or even the strict discipline.

    Like

    Comment by Phylis Feiner Johnson — April 23, 2015 @ 10:08 AM

  124. I was diagnosed with Abdominal Epilepsy at the age of around 2 and suffered from simple and complex partial seizures up until the age of 14. I developed my first brain tumour at the age of 14 and had underwent open head surgery. This cured me from experiencing both simple and complex partial seizures, however I experienced a grand-mal seizure 5 years later, at which point I came to realise that my tumour had returned. I again underwent open head surgery. Another 5/6 years later it returned again and I then underwent gamma knife surgery which has completely killed off the growing cells. To this day I am yet to hear bad news from my consultant.

    I have suffered from Auras from as far back as I can remember and to this day I still experience them.

    Regarding how I feel when I experience an aura, it is either fearful or euphoric. It is very hard to explain exactly how I feel. When experiencing a bad aura it’s almost as if I am frozen in an state of fear and cannot do anything about it. What the fear is linked to I cannot explain, but it is not a nice feeling at all. However when I experience a good aura it is close to the feeling I got when I took ecstasy (I dabbled when I was a teenager) and I do not want the aura to go away. What’s interesting is that I only feel my stomach turning and making noise when I experience a bad aura… occasionally a little flatulence! lol

    It would be interesting to see more study on the area of abdominal epilepsy. Unfortunately there have only been 36 cases documented in the last 40 years, leaving little room for the chances of research.

    Like

    Comment by Tom — May 7, 2015 @ 9:15 AM

  125. Geeze Tom, you’ve been through a rough time.

    These articles may help: A Complementary Medicine Approach to Abdominal Epilepsy

    http://www.meridianinstitute.com/epilepsy.htm

    What Is the Treatment for Abdominal Epilepsy?

    http://www.webmd.com/epilepsy/guide/abdominal-epilepsy-in-children-and-adults?page=2#2

    But you’re right, articles — no less research — are rare indeed. :-(

    Like

    Comment by Phylis Feiner Johnson — May 7, 2015 @ 9:49 AM

  126. I’ve been taking Phenytoin for the last umpteen years. I only found out 2 days ago that it is not available in Dubai. My neurologist here has recommended Keppra, Topamax, Lamictal and Vimpat. I decided on Lamictal as the best course of action after studying the side affects of all of them.

    Like

    Comment by Tom — May 8, 2015 @ 3:14 AM

  127. Lamictal is what I take also. The only side-effect was when I first started it, I was crazy/hyper. (Some people have the opposite effect.) So I split my evening dose between 5:00 and bedtime and all has been fine for 5+ years.

    Like

    Comment by Phylis Feiner Johnson — May 8, 2015 @ 8:57 AM

    • Thanks for the info. I heard that skin rashes were one of the more common side affects also?

      Like

      Comment by Tom — May 8, 2015 @ 4:15 PM

  128. Yes, there’s a slight chance that Lamictal can lead to Stevens-Johnson Syndrome (SJS)

    Stevens-Johnson Syndrome — a danger for those on Dilantin or Lamictal

    http://epilepsytalk.com/2009/10/17/stevens-johnson-syndrome-a-danger-for-those-on-dilantin-or-lamictal/

    If you get a rash, run, don’t walk, to your doc. It’s not to be trifled with.

    Like

    Comment by Phylis Feiner Johnson — May 8, 2015 @ 5:44 PM

    • Well i’ve been on Dilantin/Phenytoin/Epanutin for years. Hoping Lamictal is going to be as nice to me as my previous meds. I might just do as you did and take them at night rather than the morning. At the moment i’m taking 200mg Phenytoin and 50mg Lamictal in the morning. After one week the Lamictal will rise to 100 for 2 weeks, and thereafter 200mg stopping Phenytoin altogether.

      Like

      Comment by havingTom — May 9, 2015 @ 2:06 AM

  129. Tom, I’m up to 400mg. of Lamictal. So I take 200mg. in the morning, then 100mg. at 5:00 and then the other 100 mg. at bedtime.

    I hope it works as well for you as it has for me!

    Like

    Comment by Phylis Feiner Johnson — May 9, 2015 @ 9:30 AM

  130. I have epilepsy and for the last 9 days I have had a pain in the left side of my head that just feels like someone is sticking something through my head . It comes and goes so when the pain comes on it just catches me off guard , it is really strange . Last night I was woke up by something and I couldn’t fall back to sleep and as I was laying in bed my vision changed and became very off , it had done something I never have experienced it was as if I was looking through a kaleidoscope. There were no colors just patterns and the patterns kept changing like a kaleidoscope would if it were being turned . It went on for about 10-15 mins and then my vision went completely white and I couldn’t see anything that was for a couple secs and all I remember is that . I woke up this morning . Does anyone know if this is normal ? Is it something I will experience having temporal lobe epilepsy? Could something else be going on because I have misfiring nonstop ?

    Like

    Comment by jen — May 11, 2015 @ 1:52 AM

  131. Oh yes, I take 3 meds to help control the seizures Topomax 250 mg 2xs a day and Gabapentin 300 mg 3xs a day and then Lorazapam 1mg 2xs a day for the anxiety. If any of this helps with my first post .

    Like

    Comment by jen — May 11, 2015 @ 1:58 AM

  132. My GUESS is that it could be migraines. The symptoms sound similar.

    Take a look at “Epilepsy & Migraines — Kissing Cousins”
    and see if that sounds familiar.

    http://epilepsytalk.com/2010/09/12/epilepsy-migraines-kissing-cousins/

    Like

    Comment by Phylis Feiner Johnson — May 11, 2015 @ 9:00 AM

  133. Jen, also take a look at this article from the Mayo Clinic, I think you’ll find the description helpful:

    http://www.mayoclinic.org/diseases-conditions/migraine-headache/basics/definition/con-20026358

    Like

    Comment by Phylis Feiner Johnson — May 11, 2015 @ 9:07 AM

  134. Thank you for replying . I have actually went to the Dr. Because she was thinking it was a migraine nut since it in one area and a small spot that feels like someone is putting a sharp object in really fast and it causes the pain for just a short time she feels it is not a migraine because have been given difference migraine meds to try m now the vision thing is really making her lean toward something maybe going on inside the left lobe since my neurons are non stop misfiring and and I have seizures in my sleep. I just don’t know much about any of this and it drives me to seclude myself . I don’ t know who to talk to about it because no one understands they think I’m tired all the time for no reason . I wish that’s was the reason .

    Like

    Comment by jen — May 12, 2015 @ 12:57 PM

  135. Jen, what kind of diagnostic tests have you had? The article below may interest you:

    Beyond EEGs…Diagnostic Tools for Epilepsy

    http://epilepsytalk.com/2010/09/13/beyond-eegs%E2%80%A6diagnostic-tools-for-epilepsy-2/

    As for nocturnal seizures, they’re enough to knock anyone out!

    The Nightmare of Nocturnal Seizures

    http://epilepsytalk.com/2015/04/11/the-nightmare-of-nocturnal-seizures/

    P.S. Is your doctor a neurologist?

    Like

    Comment by Phylis Feiner Johnson — May 12, 2015 @ 2:32 PM

  136. Did you wean yourself off of Phenytoin on to Lamictal or was it an immediate transition?

    Liked by 1 person

    Comment by Tom — May 13, 2015 @ 1:30 AM

    • No, it was years between the two. I was happily seizure free before the boggy man came back.

      Then I was prescribed the Lamictal and it worked the first time around (no med merry go round) and I was titrated up to 400mg over time.

      Like

      Comment by Phylis Feiner Johnson — May 13, 2015 @ 9:05 AM

  137. Jen, please don’t put off the VEEG. It might help pinpoint what the problem is.

    Like

    Comment by Phylis Feiner Johnson — May 13, 2015 @ 9:55 AM

  138. Reblogged this on judahnaveen.

    Like

    Comment by Naveen — May 20, 2015 @ 6:50 PM

  139. I am 17 and have idiopathic generalised seizures but only ever have tonic clonic ones and severe ones too. Before I usually have an aura which my Vision goes blurry then see blue and red flashing colours then I see words I’ve seen or read before and when my eyes roll back it like follows the word and I usually scream and cannot breathe and be sick and go blue So scared of SUDEP

    Like

    Comment by Stacee — May 23, 2015 @ 4:07 PM

  140. Stacee, I hope this article will help allay your fears:

    SUDEP – Who’s At Risk?

    http://epilepsytalk.com/2011/06/08/sudep-whos-at-risk/

    Like

    Comment by Phylis Feiner Johnson — May 23, 2015 @ 4:30 PM

  141. Due to a grand mal seizure caused by medication a doctor gave me when treating me like a rat, I have brain damage in my temporal lobe. I used to have 3 auras a day, but the seizure happened in 99 so now I have about 3 auras a month. I never find my mouth tastes weird, but I can always tell when I am about to have an aura since I’ve been having them for 15 years. I find my blood pressure increases which I can tell due to this rush of feeling scared. Sometimes I can stop the aura if I physically move and talk. Otherwise my friends say I stare at something (including them) and say things that don’t make sense. I find it helps when I tell friends I have these things so they can hold me and talk to me when I do. If they do, the auras never lasts more than 30 seconds for me. If not, yes, its 5 minutes. I hope all of us can work hard and be open so that more people can help us out.

    Like

    Comment by Jennifer — June 12, 2015 @ 1:37 AM

    • Are you on any meds? I was diagnosed with partial complex seizures a couple of days ago. Been haiving auras for several years, finally got it checked out. Doc prescribed Dilantin, and I don’t want it. Have been wondering if I should just keep letting the seizures happen. They only last about a minute.

      Like

      Comment by Steve — June 12, 2015 @ 2:23 AM

  142. Jennifer, you’re probably having a Simple Partial Seizure. The aura IS a seizure.

    An aura is actually a small seizure itself — one that has not spread into an observable seizure that impairs consciousness and your ability to respond. You don’t lose consciousness.

    In other words, something is going on in your brain. But it isn’t spreading.

    Sometimes this abnormal electrical activity tapers off. At other times, it spreads and leads to severe seizures.

    Auras can occur as a warning that a bigger seizure is about to happen. And sometimes they can occur just by themselves.

    A way to distinguish between the two is if you have no movement at all, then it’s considered an aura. If you have actual movement, then it’s considered a Simple Partial Seizure.

    So, in a way, the auras are a good thing — as a warning.

    But even better, you’re open enough so that people understand and are caring and loving when you need them most.

    Like

    Comment by Phylis Feiner Johnson — June 12, 2015 @ 11:43 AM

  143. Hi Phylis.

    Thanks for reply. I haven’t started taking any medication yet, so nothing to discontinue. (The container full of Dilantin is unopened.) I had read this piece on discountinuing before, so I thought it better to not even start.

    I don’t think I will be able to work with this doctor. She seems nice, but cavalier. She did tell me that we could change the medication if I had problems with it. But why start with something so awful?

    The zillion other meds has my head spinning, by the way. Have only had a diagnosis for five days, so I’m trying to learn as much as I can about this thing as fast as I can; but I honestly don’t even know where to start with this baffling array of treatment options.

    I know that I don’t want to give up alcohol; don’t want rage, constipation, bone loss or gum rot; and I don’t want to be a danger to myself or others. Also, it would be nice to just have to remember to take something once a day, if you have to take anything at all. But I just hate the idea of being on meds at all – having a hard time accepting it. So what to do.

    I’ve emailed my primary doc a request for help to find more opinions, but haven’t heard back from him yet. I’m in the Kaiser system, and I noticed a few neuro docs from Kaiser in the good docs list. Might try to contact them directly.

    Meanwhile I’ve been getting along ok with about 10 of those one minute episodes a month, so I’m wondering if treatment is really worth it.

    Very much appreciate this blogspot, by the way. Good to know there are others out there, even though I’m sorry to hear what you all have gone through. I haven’t told anyone about this except my wife. Although she is very supportive and calm about it (she’s a healthcare professional and has some familiarity with this), I feel kind of alone with this sometimes.

    Like

    Comment by Steve — June 13, 2015 @ 5:22 AM

  144. DON’T play doc. If your primary doc won’t make any referrals (perhaps it’s for political reasons), then find your own neuro at Kaiser. Get a second opinion. A third. Keep going until you feel it’s a doc you respect and who listens to you.

    I can see your reluctance to take Dilantin. I was on it for 10 years and had galloping gum rot and my beautiful long hair had to be cut to a “bob”.

    However, Dilantin was one of the first epilepsy drugs (in my case, it was that or Phenobarbital, I had little choice) and there are plenty of other options now.

    Start with a new doc and then see what they have to say.

    Like

    Comment by Phylis Feiner Johnson — June 13, 2015 @ 9:17 AM

  145. I feel so out of the loop in everything I know. I was diagnosed with epilepsy in October 2013. I know I have seizures, I know I have auras, I know I feel terrible right up until I have a seizure. Then I have one, I’m sick and exhausted for 3-4 days, then the cycle continues. I don’t know much other than that. My husband is USAF , were stationed on Guam, there’s only one neurologist here and really nothing has been explained to me about what has been going on with me. Why , after all these years I’ve started having seizures. Reading the comments, and the information here, I’m blown away by how much I don’t know about my condition. It’s frustrating to try and understand all these different components , and figure out where I fit in. I’m on medication, and I take it religiously. But being so far from really any decent support and other resources, I’m at a loss.

    Like

    Comment by Jennifer Lehman — July 9, 2015 @ 1:42 AM

  146. Jennifer, we’re here to help you.

    First let’s start with a daily seizure diary.

    Write down your sleep patterns, what you’ve eaten and when, daily activities (including emotional upsets) stresses, occurrence and duration of seizures (if you can), and how you feel afterwards.

    That might give you a clue about your triggers and auras.

    If you can, have your husband take a video of when you’re having a seizure. (I know, that sounds gruesome.)

    Have you had any testing? What kind? Do you know what kind of seizures you have?

    Let’s start from the beginning and take it from there. OK?

    Like

    Comment by Phylis Feiner Johnson — July 9, 2015 @ 10:03 AM

  147. What if you can’t pinpoint your auras? I started having seizures 2 years ago and am on medication. I read the list of common auras and have had many over my 11 years with MS. How do I narrow it down?

    Like

    Comment by Pam Schmidt — July 13, 2015 @ 11:37 AM

  148. Pam, I would keep a daily diary of sleep patterns, what you eat and when, daily activities (including stresses and upsets) how you feel at the onset of a seizure (triggers and auras) and then the seizure itself — before and after.

    That might help narrow it down — especially if you know your triggers.

    Like

    Comment by Phylis Feiner Johnson — July 13, 2015 @ 12:54 PM

  149. This is the most detailed article about auras I have read. I have just started having visual symptoms during my auras(in addition to my usual symptoms). this is new to me, and I couldn’t find the words to describe them. but I found them here. Thank you epilepsy talk.

    Like

    Comment by Marissa — July 17, 2015 @ 10:00 PM

  150. And thank you Marissa! :-)

    Like

    Comment by Phylis Feiner Johnson — July 18, 2015 @ 9:48 AM

  151. I have been having partial seizures since my teens. I’m now in my late 30s.i get auras. It’s starts with nausea, then all sounds muffled, like I can hear but feel I don’t know like I’m in a tunnel hearing things from the outside. Then I notice I get very dizzy, ringing in ears and sometimes I feel like my hands are going to sleep. Once I feel dizziness I try to sit down before I fall. I have hit my head on several times during one because of falling and almost always it happens in the morning. I’m now trying to figure out if I’m having night-time seizures because no matter how much sleep I get I’m always exhausted and sometimes quite shakey in the morning. Once or twice I have notice what I thought were weird dreams but in the morning someone tells me that it really happened. Could I be having them at night as well? Sorry so long

    Like

    Comment by Shannon budd — July 24, 2015 @ 7:27 AM

  152. Shannon, because the seizures happen in the morning and because of your reality dreams, do you think it may be a “hang over” from night time seizures?

    This may help:

    The Nightmare of Nocturnal Seizures

    http://epilepsytalk.com/2015/04/11/the-nightmare-of-nocturnal-seizures/

    And to be honest, I don’t know what’s going on with the rest of your activity, but have you seen a neuro lately?

    To get a handle on the activity, it might help to keep a daily seizure diary noting sleep patterns, (and dreams), how you feel before you go to sleep, during sleep and after you wake up, daily activities (including any emotional upsets), times of seizures and duration — if you can.

    That may help sort some of this out.

    I’m sorry I can’t help you more. :-(

    P.S. Do you know what your triggers are? The seizure diary could help you with this, too.

    Like

    Comment by Phylis Feiner Johnson — July 24, 2015 @ 8:37 AM

  153. hello everyone out there. Im new to this place , but have been around this block quite a few times with this topic, being an epileptic. Has anyone else out there had a craniotomy for the seizures?

    Like

    Comment by geraldgawlikjr — July 28, 2015 @ 11:23 PM

  154. I haven’t, so I have no personal experience.

    Like

    Comment by Phylis Feiner Johnson — July 29, 2015 @ 9:21 AM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I've also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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