Epilepsy Talk

Stopping Seizures… | April 23, 2010


Who wouldn’t want to stop — or even alleviate — a seizure? Well, you may be surprised at the different options you have. (I was surprised myself!)

Some methods stop a seizure in it’s tracks. Some shorten seizures. And some relieve you of the dreaded after-effects. So, even though they may not be effective or attractive to you, here are some possibilities you might not have known about…

The big news is Midazolam, which has a fast and radically different effect. If you don’t know about it (I didn’t), read carefully…

In a new critical study, published in the prestigious New England Journal of Medicine, researchers found that injecting emergency anti-seizure medication (such as Midazolam ) into the muscle, can stop prolonged seizures those seizures that last for five minutes or longer faster than if it were administered through an IV line.

On average, the seizures were shorter for those patients who were administered a shot of Midazolam, directly into the thigh muscle — using an auto-injector (similar to an EpiPen), and lasted just 1 1/2 minutes after the medication was injected. By contrast, patients who received anticonvulsant drugs by IV drip, suffered longer seizures, which continued on average for as long as five minutes before the treatment took effect.

In short, administrating the new drug Midazolam has shown to be a faster and more effective method for emergency seizure first aid.

Some children use Ativan or Klonpin tablets or wafers, placed under the tongue for rescue from seizure activity – which is an excellent way to go. Especially since establishing an IV can be challenging, if not impossible, in convulsing patients.

While an intravenous medication may access the bloodstream faster, it can take a long time before the patient actually gets the IV medicine. And it’s important to determine the correct dose.

Then there’s Diastat. Traditionally, it’s been the first line of fire in rescue meds for extreme seizures. It’s available in a gel form that is inserted into the patient’s rectum to stop a cluster of repeated seizures. (It’s absorbed more quickly that way.) However, children, adults and caretakers aren’t too keen about it, and you can understand why. But recently, it’s been made available in a liquid oral form that comes in a syringe and goes right into the cheek of the mouth.

Recent articles discuss the possibility of delivering an antiepileptic drug quickly by nasal spray.

On the forefront is Diazepam Nasal Spray which offers a therapeutic alternative that can be administered rapidly and conveniently.

That kind of a delivery method would provide something for people as they felt a seizure coming on. Or if they were in the midst of a cluster of seizures.

Klonopin, Valium, Ativan, and Midazolam nasal sprays are still under study as a way to stop seizures. Of course, the majority of patients tested preferred the nasal spray in terms of convenience. (Ask your neuro about them, because they’re relatively new.)

In short, you have these options plus a whole lot more AEDs which might help control seizure activity. Find out more about these. (Believe it or not, your pharmacist could be a terrific source because he/she’s worked with most of the meds and knows the up-sides and the down-sides.) And remember, once you know all your options, you may be less fearful and more in control when a seizure strikes.

Additional articles of interest: 

Common Epilepsy Triggers

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

Weird Epilepsy Triggers…

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

First Study of Diazepam Nasal Spray in People with Epilepsy Shows Feasibility of Dosing During Seizure

http://technews.tmcnet.com/news/2013/06/26/7232917.htm

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:

http://www.epilepsy.com/pdfs/journal/EJIS-Issue1-6.pdf

http://www.lef.org/protocols/neurological/epilepsy_02.htm

http://www.coping-with-epilepsy.com/forums/f20/hey-all-7156/

http://epilepsyfoundation.ning.com/forum/topics/does-everyone-have-diastat-or?id=2217546%3ATopic%3A253820&page=1#comments

http://www.ncbi.nlm.nih.gov/pubmed/19817813

http://www.ice-epilepsy.org/emergency-administration-of-rescue-medications.html

http://www.ucsf.edu/news/2012/02/11535/improved-emergency-treatment-prolonged-seizures

http://www.uphs.upenn.edu/news/News_Releases/2012/02/epilepsy/

http://abcnews.go.com/Health/Wellness/epi-pen-epileptic-seizures-researchers-step-closer/story?id=15646106#.T3slEavHLHQ

http://healthnews.uc.edu/news/?/10701/

http://my.epilepsy.com/epilepsy/newsletter/july10_spray


155 Comments »

  1. A long time ago, I was afraid to close my eyes at night! It was do to seizures, I would have w/ my eyes closed and during dark hours. This may sound strange. It was an intense fear.

    My mother would ask how do you pray and I told her I would look at the floor. I told this to my Reverand and relayed a simple statement. I learned that God is infinite, and he never sleeps, he is the one that made the atoms, and every iota of us. He has his arms around us in every situation. He told me to close my eyes during prayer. It took me a while and I noted I did not have a seizure. That year I had several status epileptic attacks. The Neurologist told me, that my fear had left. I still had serious seizures but I had recovered so quickly. The fear was lessened or was gone.
    My fear was having a seizure and no one around. Once I recognized that God was with me. I relaxed. That was 41 years ago. My seizures are better. THe Neurologist that I noted you have a lot of seizures but you are more relaxed. My seizures w/ fear and spots in front of my right eye.

    Comment by Toni Robison — April 23, 2010 @ 3:41 AM

    • I think so very much has to do with fear and tension. I mean stress itself (which includes fear) can trigger a seizure. What your Reverend said was simply beautiful. And inspiring. You beat your fear with faith.

      Comment by Phylis Feiner Johnson — April 23, 2010 @ 4:57 AM

      • I am an agnostic, not a prayer, but am going to begin right away.

        I had a seizure & apparently flipped my car over…..April 22nd…..in Los Angeles….at 6pm! Thankfully no one else was involved & I was the only one who ended up in ER.

        My seizures begin with an electrical jolt just as I doze off. I’m scared to lay on the sofa to watch TV or to read when I lay in bed in the morning.

        I have used at least nine different meds over the past 26 years. I have to admit I want the seizures to be something other than epilespy, something I can control with positive thinking. I even had a doc at UCLA tell me in October that I need a psychiatrist.

        I suspect these meds haven’t worked because I didn’t want them to work. Based on what you said, Toni, I’m going to turn this over to God.

        Thank you.

        Comment by Cindy Lee — April 25, 2010 @ 8:09 AM

  2. I have a strong faith in God. That has helped me through many situations. Seizures, I believe, is one of them.

    Another way I fight seizures is poetry, it relaxes me.

    Just before dinner, I smelled gas. I ignored it and it went away. It was an aura. I did not have a large seizure.

    Sometimes, I have panic attacks. I even wrote a poem about them. Thank you Phylis, for telling me how to overcome it.

    Comment by Ruth Brown — April 23, 2010 @ 9:52 AM

  3. You go girl!!!

    Comment by Phylis Feiner Johnson — April 23, 2010 @ 7:23 PM

  4. Thank you for the encouragement, Phylis.

    Comment by Ruth Brown — April 23, 2010 @ 9:37 PM

  5. Wonderful post! I have been seizure free for just more than a year now for the first time since when I was in high school, and I almost 25.

    Medication and changing my lifestyle have gone a long way to decrease the occurances, but I still dread and fear that it could happen again.

    Comment by jun85 — April 25, 2010 @ 5:29 AM

    • I think everyone, whether they have 5 seizures a day or are seizure-free, lives in that fear. They know what it’s like, they feel what it’s like and they just don’t want to go back there again.

      Congratulations to YOU for being seizure-free for more than one year. Keep up the good work! :-)

      Comment by Phylis Feiner Johnson — April 25, 2010 @ 9:59 PM

      • I dont live in fear of my seiz. I just dont like them when they cause me pain, or keep me from doing what I want at the moment. No, not fear. Actually nothing. Im not depressed of them.

        Comment by jennifer schnegg — October 31, 2010 @ 1:05 AM

      • I definitly live in “fear” of my seizures…not of dying but the embarassment when I have them in public. Im a singer so I was going to a club to just mingle and have my music played by a famous dj and I had a seizure. I was told I knocked over a whole table with drinks and expensive bottles of champagne. The bouncers threw me out because they thought I was drunk or on drugs. I have extreme confusion after and have “come to” across my apartment complex in a white, see through shirt and some panties, just walking. My feet were all bloody from actually walking down 3 flights of stairs uncoordinated. That is only 2 of the MANY MANY horrible experiences from this horrible thing I live with.

        Comment by Camile — March 26, 2011 @ 2:30 AM

      • Camille, that must have been so humiliating and devastating.

        We all have our stories, (either psychologically and/or physically), and often they are painful to experience and painful to remember.

        That’s why we’re here…to talk and help each other. Thanks for confiding your story.

        Comment by Phylis Feiner Johnson — March 26, 2011 @ 3:05 PM

  6. Hi Cindy, that must have been horrible. The car accident and you feel like an electrical jolt before you have a seizure. Are you all right from the car accident?

    I think positive and have a good attitude when it comes to my seizures. That really helps me get through my episodes.

    Hi June, that is great that you have been seizure free for a year. I know some people who have been seizure free for 10 years. My sister was seizure free for 43 years. That gives us all hope.

    With my meds and I changed my lifestyle, too. That helps a great deal in being seizure free. I also have diabetes, which causes seizures. I have to keep my diabetes under control to have fewer epilepsy seizures.

    With my diabetes, I have to watch my diet and I exercise All of these are great for us.

    Comment by Ruth Brown — April 25, 2010 @ 10:20 PM

  7. Cindy Lee, I think when you had the car accident, you probably hit your head real hard and that jolt could have either influenced your seizures or caused some other type of irregularity.

    YOU MUST GET TESTED, SO THAT YOUR SITUATION CAN BE PROPERLY ASSESED.

    As for testing, an EEG is not the be all and end all of testing. I know someone who had 5 EEGs before he was properly diagnosed. So know your options and read Beyond EEGs…Diagnostic Tools for Epilepsy. http://epilepsytalk.com/2010/03/31/beyond-eegs%e2%80%a6diagnostic-tools-for-epilepsy/

    It sounds like you’re not too happy with your neuro either. Here’s a list of neuros in California (sorry, I don’t know where you live) from eforum members of the EFA, based upon their positive personal experiences:

    Dr. Kristin D. Ashley, Auburn, CA
    Dr. Everett Austin, Kaiser in Redwood City. Also UCSF Epilepsy Center, CA
    Dr. Robert Burgerman, Sacramento Comprehensive Epilepsy Program, CA
    Dr. Robert S. Fisher, Stanford Epilepsy Center, CA
    Dr. Blondell Gage, Kaiser, Stockton, CA
    Dr. Christianne Heck, USC, CA
    Dr. Rosalind Hsia, Sacramento Comprehensive Epilepsy Program, CA
    Dr. Vincente Iragui, UCSD, CA
    Dr. Kenneth Laxer, California Pacific Medical Center, CA
    Dr. William Marks, UCSF, CA
    Dr. Martha Morrell, Chief Medical Officer of NeuroPace, Mountain View, CA
    Dr. Edwin Tasch, Kaiser, Santa Clara (Permanente Medical Group), CA
    Dr. Jill Trice, Choc Epilepsy Center, Orange, CA
    Dr. Calvin Wheeler, Kaiser, Fremont, CA

    While you’re waiting for your appointment, try keeping a seizure diary of what happens before a seizure, what happens during it and how you feel afterwards. That will at least give the doc some idea of what you’re going through.

    As for the lying down fear, I used to have it in spades, but thankfully, I grew out of it. I would wake up from sleep with the insides of my head spinning about 1,000 miles per hour. I’d clutch at my scalp, tear at my hair and cry, but there was nothing I could do about it. I couldn’t scream or yell because I was so terrified. And then as suddenly as it started, it would end and eventually, I’d fearfully go back to sleep.

    I still have a seizure when I’m put in an inverted position — like at the dentist (he LOVES working on me)but that’s small potatoes compared to what I used to go through. Also, my doc gives me Klonopin to ease the anxiety of going to sleep.

    Finally, if they do tell you, “It’s all in your head,” you should know that 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 is not caused by a problem in the brain.

    Then there are physiologic nonepileptic seizures which can be triggered by some sort of change in the brain — typically a change in the supply of blood or oxygen rather than electrical activity.

    So you’re not going crazy, I’ve had both. (Or maybe we’re going crazy together!)

    Good luck, Cindy Lee and please address the situation and let us know how you do!

    Comment by Phylis Feiner Johnson — April 25, 2010 @ 11:17 PM

  8. I have non epileptic seizures as well as my epilepsy and diabetes seizures. I have 3 types.

    Cindy, have you asked for another doctor at UCLA? They have a vast amount of doctors. I live in CA, too. I live about an 8 hour drive from UCLA.

    An EEG only shows up epilepsy if you are having a seizure during one. Ask for a V-EEG, that will show up your seizures.

    I am on Klonopin, that stops seizures, like Lorazepam, right on the spot.

    Comment by Ruth Brown — April 26, 2010 @ 9:40 AM

    • I just thought of something Ruth. Could some of your seizures be caused by anxiety? Because my doc gave me Klonopin also, as an anti-anxiety supplement to my Lamictal…

      Maybe some breathing exercises or visualization might help you.

      Comment by Phylis Feiner Johnson — April 26, 2010 @ 7:48 PM

  9. I am glad to hear that. I do have anxiety and panic attacks.

    I was put on Klonopin when it was new on the market. I was having too many tonic clonics and that stopped them.

    At the time, my neurologist did not want to put me on it. He put me in the hospital and said that if I had severe seizures in 3 days, he would put me on it.Sure enough, I had severe seizures and he put me on Klonopin. I am glad it works for anxiety attacks too.

    Comment by Ruth Brown — April 27, 2010 @ 10:24 AM

  10. I have anziety but not panic attacks

    Comment by Jennifer Schnegg — September 1, 2010 @ 2:36 AM

  11. I had FIVE panic attacks last week. My shrink gave me a workbook on coping and arresting them.

    Comment by Phylis Feiner Johnson — September 1, 2010 @ 10:44 PM

  12. Jennifer, you said that you have “anxiety but not panic attacks.” What is the difference between the 2? I had always thought they were the same.

    I wrote a poem on my Panic Attacks last year. Writing poetry also calms me down. This whole year I have not come up with a poem.

    Comment by Ruth Brown — September 2, 2010 @ 4:05 AM

    • The difference is anxiety is,

      well mayb a very mild, mild form of panic attacks. But its over things most people would have anxiety over. When I think of panic attacks, I think of people all of the sudden have severe attacks and heart race, and swet bad. What is clonapin? Is it a anxiety pill?

      Comment by jennifer schnegg — October 31, 2010 @ 1:13 AM

      • Klonopin is an anti-anxiety, anti-seizure med. I take .05 MG in the AM and 1.0 MG in the PM…along with 300 MG of Lamictal in the AM.

        Comment by Phylis Feiner Johnson — November 4, 2010 @ 4:57 AM

      • Maybe I should ask my Dr. about it. It might actually help me. Why did your Dr. not want to put you on it?

        Comment by jennifer schnegg — November 4, 2010 @ 5:18 AM

      • My doctor recommended the Klonopin + Lamictal combo. Do you mean Ruth?

        Comment by Phylis Feiner Johnson — November 4, 2010 @ 6:24 AM

  13. I find writing poetry very soothing and cathartic. But since I write all day long, it’s sort of like a busman’s holiday.

    The same thing goes for reading. I don’t read as much as I’d like to, my eyes get tired from the computer. But Arthur DID buy me a sexy new Kindle. The newst model, which is slate colored, thinner and easier to navigate. :-)

    Comment by Phylis Feiner Johnson — September 2, 2010 @ 5:12 AM

  14. The Bible is easy to read. That is my preference. I like to read too.

    Comment by Ruth Brown — September 2, 2010 @ 5:45 AM

    • I dont find the Bible easy to read. Never have.

      Dont like going to church.

      In a way, I am mad that God left me with Epilepsy.

      Comment by jennifer schnegg — October 31, 2010 @ 1:08 AM

      • Don’t be mad with God….He wants nothing but good things to happen to you. He is your source and way out of epilepsy. You are truly wrong at the wrong person. I hope you have a change of heart soon. He has not left you.

        Comment by Tara Clark — November 23, 2011 @ 3:28 PM

  15. Jennifer, were asking me about my Klonopin?

    The doctor did not want to put me on it because it is addictive. Three doctors have tried to get me off of it and I almost went into status. They no longer try to take me off of it.

    Comment by Ruth Brown — November 7, 2010 @ 8:07 AM

  16. I’ve been on Klonopin for 2 years and had no problems at all. I think it’s just a matter of body chemistry. We’re all different!

    Comment by Phylis Feiner Johnson — November 8, 2010 @ 3:11 AM

  17. I’ve yet to find a medication that works. I was Epileptic since 3mo old & have seizures throughout the brain. My seizure types-tonic, clonic, tonic clonic, febral, both sympol and complex partials, grandmal & status epilepticus. I have also had problems finding a doctor/neurologist that unless it’s in the ER, are refusing to see me or keep me as a client. Anybody have an idea on what to do?

    Comment by Justin — December 29, 2010 @ 2:21 PM

  18. Welcome Justin,

    First of all, the docs in the ER are not the brightest crayons in the box. I don’t know where you live but here is a link to a NEW Comprehensive list of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors, compiled by eforum members who have had positive personal experiences with these docs over the years. http://epilepsytalk.com/2010/12/03/new-comprehensive-list-of-good-neurologists%e2%80%a6epileptologists%e2%80%a6neurosurgeons%e2%80%a6and-pediatric-doctors/

    Another thought is that you may try one of the anti-seizure diets which have helped those with intractable epilepsy. (Factoid, 30% of people with epilepsy do NOT respond to medication!)

    Anyway, here’s some info on the diets. You might want to google them to get more in-depth info. http://epilepsytalk.com/2009/10/04/eating-well-is-the-best-revenge/

    Next, try keeping a daily seizure diary, noting your sleep patterns, what you eat and when, daily activities (including emotional upsets), how you feel before a seizure (auras? triggers?), during a seizure, afterwards and the duration of the seizure. This might help you identify your triggers and give you a better idea of what’s going on with your body.

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

    And please get back to us so we know how you’re doing…

    Comment by Phylis Feiner Johnson — December 29, 2010 @ 9:24 PM

    • I currently live in Oregon and have seen every Doctor and neurologist here in Oregon. I am unable to drive so my choices are limited. Surgery is also not an option, because its throughout the brain & cannot pinpoint the cause or location- I also have only had one siezure in my 29 year life time where an aura occured, or was remembered.

      Comment by Justin — December 30, 2010 @ 3:00 AM

      • Justin,

        Have you been to Oregon Comprehensive Epilepsy Center? That’s the place that’s been most highly recommended by eforum members.

        I looked at the U.S. News & World Report’s annual hospital survey and, unfortunately, it wasn’t at all helpful.

        Comment by Phylis Feiner Johnson — December 30, 2010 @ 4:38 AM

      • Justin,
        I understand about the ability to find a good doc and the distance. I have come to find out that not all Epilepsy centers are the same. I live in Columbia, SC and am going to Charleston to check out the Epilepsy center there. My new neuro doesn’t like the one in Augusta, GA where I had a study done previously. Don’t give up! New docs move in all the time.

        Comment by Tennille — January 13, 2011 @ 6:10 AM

      • Justin,

        I go to The Oregon Clinic neurology Dept. on Hoyt Street (near Providence). My neurologist, Dr. Gerber-Gore, is terrific (patiented-centered vs. self-centered). She was recommended to me by the OHSU Comp. Epilepsy Center.

        Good luck.

        Tom

        Comment by Tom — October 7, 2011 @ 5:56 PM

    • Well currently my wife keeps a diary for my seizures, and I have tryed quiet a lot of dietary plans. My doctor and the ER keep telling me and my wife that other than the seizures my body is in great condition and healthy. I have never had an aura, I’m in bed by 930-10:00, and up by 9am, I’m not aloud to work, drive, and after the 5th time of impact with a car in the middle of an intersection have been asked to stay off my bike. But I work out at home go for jog’s or walks with my wife. But after the last few months of my seizures and my last one, that kept me in a simple partial for five days straight then through me in to a grand-mal I have managed to get extra help. They just started paying my wife to stay home with me 24/7 to wach and make shure I dont leave the house why’ll in one, and now have me on OHP and AARP/Medicare. So as others say try and hope for the best…..

      Comment by Justin — December 27, 2011 @ 1:22 AM

      • The other sad have to the story, is that over the last 4 years, all the neurologist from seattle,WA down to sacramento, CA have refused to except me as a patient and will only survise me in the ER…

        Comment by Justin — December 27, 2011 @ 1:40 AM

      • Justin, your attitude is amazing. Why will no doctors agree to see you? There’s an organization called Free Medical Camps…you might want to see if they can help you.

        Click on the link to find a location near you….

        http://www.freemedicalcamps.com/index.php

        Comment by Phylis Feiner Johnson — December 27, 2011 @ 2:58 PM

  19. Hi Justin, I am glad to meet you. I hope you get better. Phylis knows all of the best places. Keep us updated.

    Comment by ruth brown — January 1, 2011 @ 5:38 AM

  20. Phyllis (others)

    I’m on Keppra (500 mg 2x day and Dilantin 300/400 mg day) for Juvenile Myocolonic Epilepsy and generalized seizures. I had two TC seizures on Friday night after a stressful two weeks at the office (I haven’t had a TC since 08/19/2009). First one ever while sleeping. Wasn’t so lucky on the second one…dropped in the kitchen. I’m banged up, but will heal and I didn’t fall on one of our dogs. Scared my wife half to death.

    You take Klonopin and 300 MG of Lamictal Phyllis. Do you mind if I ask what led you to these drugs? I think I read that you were on Dilantin and Keppra at various times, but had difficulty with them both. Anyone else experiencing similar med problems willing to share?

    Comment by Tom — January 31, 2011 @ 5:38 PM

    • Thanks so very much, Tom. I posted these sites before but the seemed to get lost in the shuffle. ;-)

      Comment by Phylis Feiner Johnson — November 23, 2011 @ 6:46 PM

  21. Welcome Tom!

    First of all, I suffer from clinical depression, so the Lamictal and Klonopin are perfect for me.

    At its lowest dose, Lamictal is an anti-anxiety med. At its next level, it’s both an anti-anxiety drug AND an anti-seizure med. Klonopin works to deal with the anxiety of seizures…so together,they work well for me.

    Dilantin made me a zombie. And fortunately, I’ve never been on Keppra. Are you on the brand name or the generic?

    You might be interested in reading these two threads…

    Keppra Generic Seizure Drug Contributing to More Seizures, Side Effects and Death

    http://epilepsytalk.com/2010/07/17/keppra-generic-seizure-drug-contributing-to-more-seizures-side-effects-and-death/

    And also, Keppra – What People Are Saying…

    http://epilepsytalk.com/2010/10/15/keppra-%e2%80%93-what-people-are-saying%e2%80%a6-2/

    I hope this helps answer your questions.

    Comment by Phylis Feiner Johnson — January 31, 2011 @ 6:38 PM

  22. Does anyone have a child with Klinefelter Syndrome and Epilepsy? Keppra and natural supplements are not working well,its been almost a year since the first Tonic Clonic seizure was noticed. my email is laryan@rogers.com and would appreciate any advice.
    Thank you
    Lori Ryan,RHN

    Comment by Lori Ann K Ryan — October 5, 2011 @ 3:07 PM

  23. Does anyone still frequent these boards?

    Comment by Brandy F. — October 6, 2011 @ 4:41 PM

  24. Yes, 238 people to be exact.

    Comment by Johnson — October 7, 2011 @ 5:02 PM

  25. hi i am on epilum chrono and my neuro prescribed me with clobazam and told me to take it only if i feel a seizure coming on does anyone know if this works?

    Comment by Catherine Turnbull — October 18, 2011 @ 12:11 PM

  26. The only thing I can guess is that he’s using clobazam as a “stop gap” in case of emergency.

    Seems like he doesn’t want to drug you up, which is a good thing.

    Comment by Phylis Feiner Johnson — October 18, 2011 @ 1:48 PM

  27. I am hoping to get others to understand the value of epilepsy awareness (especially after I suffered a seizure at work and was restrained by a larger man who ended up fracturing three of my ribs). House Resolution 298 is a small step toward having a concerted effort to raise awareness without out spending public funds. Google it and consider what you can do to support the resolution.

    You can contact your US representative’s office directly, or you can cut and paste the following link into your Google Web browser (it doesn’t seem to work with Yahoo). It takes minutes.

    http://capwiz.com/efa/issues/bills/?bill=49573506&size=full

    For a text of the resolution, cut and paste the following link into your Google Web browser:

    http://capwiz.com/efa/webreturn/?url=http://thomas.loc.gov/cgi-bin/query/z?c112:H.RES.298

    TW

    Comment by Tom — October 18, 2011 @ 5:35 PM

  28. I consider my first seizure a gift from God – without it I would not have ended up dating my wife. #2 & #3 – well, the jury is still out.

    I do have the intense anxiety as an aura. Happy thoughts are very difficult to summon in those moments.

    As you raise awareness, remember that epilepsy is mentioned in the Americans with Disabilities Act and you can ask for reasonable accommodation.

    Comment by Allen — October 31, 2011 @ 10:32 PM

  29. I was lucky enough to be at one of the “town meetings” with the EEOC. They were extremely responsive.

    Interestingly, one man was blind and another lady was disabled in a wheelchair. That’s two out of six!!!

    By the way, do you take anything for the anxiety? For example, at its lowest dose, Lamictal acts as an anti-depressant. At its next level, it’s an anti-depressant and an anti-seizure med…

    Comment by Phylis Feiner Johnson — October 31, 2011 @ 10:44 PM

  30. Allen…Thanks for mentioning the ADA. I now have a deep appreciation for those that were on the front lines of the civil rights movement of the 60s. The employment provisions of the Americans with Disabilities Act, and its more recent Amendments are only as good as the employers who are responsible for respecting the laws’ intent…i.e., to make employment possible for those that are affected by a disability (including epilepsy). Without the cooperation of employers, workers with a disability have a choice…stand up for your rights, or be among the chronically unemployed. Take a look at the case load of charges being processed by the EEOC (go to Disabilities.gov or the US Justice Department’s Civil Rights Web Sites). It’s a sad state of affairs; almost as if the Acts themselves are ahead of their time. What did we not learn from the civil rights movement that requires us to learn the same lessons all over again for another group of citizens? Like it or not, we are a part of the civil rights movement of today. But we’re not organized, there are no clearly defined objectives and we lack the leadership necessary to gather momentium necessary to make meaningful change. So, the void means that the war drags on, and is fought continuously one small battle at a time. It takes it toll on individuals; I know, mine has been going on for a long time. And when I’m through, many others like me will have to fight the same battles with the same employer.

    Effective enforcement of the ADA is a discussion that is long overdue, and without action the only apparent winners will continue to be the politicians who dust it off to celebrate its annivesary every 20 or so years. We need to do better.

    Comment by Name Withheld — November 1, 2011 @ 6:51 AM

  31. God Bless all of you and have a safe seizure free holiday! I pray none of us have anymore seizures EVER!!! Much love….Tara NOV. 23, 2011

    Comment by Tara Clark — November 23, 2011 @ 3:25 PM

  32. has anyone had seiz control using the atkins or modified atkins diet? Or any other diet?

    Comment by jennifer — November 25, 2011 @ 2:06 PM

  33. All the info on this site has been so informative and as a new seizure patient was searching for those who can relate to what i’ve beeen going thru. Wow ! and you’ve touched them all from the fear of having them to the anxiety and panic attacks. I just wanna say thanks you and this site will be frequented by me. I’m currently on 900mg of trileptal twice a day and .25 mg of Klonipin as needed .

    Comment by Shantel — December 5, 2011 @ 5:41 PM

  34. A warm welcome to you Shantel!

    There are tons more articles than those listed on the sidebar. So if you’re looking for something, try typing it into the (rather retarded) seach space or else, just sing out and we’ll try to help you.

    Comment by Phylis Feiner Johnson — December 5, 2011 @ 6:00 PM

  35. Oh thanks Phyiis !
    My seizures started with a trimmer in my right hand then dr kept increasing my meds trying to stop the trimmers but what i notice is that the last med i was prescribed (diprivex) didn’t stop the trimmers but stopped the brain from identifying it as an aura. I don’t know if i’m explaining it correctly but thats the best i can do . have any one else experienced that ?

    Comment by Shantel — December 5, 2011 @ 6:53 PM

  36. My name is Regina. I am new to this site and happy to share my experiences with others who are suffering from epilesy. I had seizures since I was 15. My Dr. stated he couldn’t find any sign of epilepsy after running cat scans, EEG, and other tests. However, I have still been having seizures now for 20 years. I am on Lamictal (the generic) 300 mg. I have been on a number of meds including Toprimate, Depakote, Keppra

    Comment by Regina — December 18, 2011 @ 4:20 AM

    • Welcome Regina!

      I’ve had seizures since I was 12. They told me I’d outgrown them. Ha. I did have a period where I was seizure-free, but they came back. Persistent little devils!

      As for the tests, to my knowledge, tests are only relevant if you have a seizure during the testing itself.

      This link may help you:

      Beyond EEGs…Diagnostic Tools for Epilepsy

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

      Often you need a supplement to Lamictal. I’m on Lamictal, but it’s supplemented by Klonopin. That doesn’t mean it will work for you, though.

      Each of our bodies are different…and respond in their own way. I know, it took me a long time to find my “magic med mix.”

      I hope you find your solution sooner, rather than later.

      Comment by Phylis Feiner Johnson — December 18, 2011 @ 6:13 PM

  37. I need help and my doctor cannot provide it. I’ve been seizure free for over 6 months and had the VNS surger (which btw is an option if you cannot have brain surgery). I’ve had Epilepsy for the last 10 yrs. No medications have ever worked completely until I had the surgery. I still however have very regular and constant auras. They can last for hours which does cause panic, which is not good for my auras. I am in a vicious cycle.

    I am only writing because I need to know if I am the only one in the world that has auras all the time and hates them. I am seriously considering just ending my life. I can’t feel this way everyday. I have the option of taking clonazepam and lorazepam which I take as much as I can, as often a can but still do not have relief for a couple of hours.
    Help, anyone. I already get on my knees and pray, try to talk myself through it. I have been logging my days and activity but cannot find a pattern yet.
    I will try the nose pressure thing.
    One other person out there that has this creepy feeling, foul taste in their mouth, tingling hands and feet. PLEASE.

    Comment by Leslie Leonard — December 23, 2011 @ 4:03 AM

  38. No, Leslie, No.

    Suicide is NOT the answer. (Although, I must admit, I tried it myself. NOT a pretty picture, believe me.)

    I know all too well about the metallic taste in my mouth. It colors everything you eat. It’s a constant reminder of where you’ve been or where you’re going. It’s disgusting.

    My hands don’t tingle, but they constantly shake. (That’s why I write with a pencil!) And for every Christmas card I wrote successfully, two others found themselves in the garbage can.

    Auras are ugly. They leave you wondering. And worrying. And that alone can leave you frightened.

    But don’t give up. Please. We are here to help you in any way we can, to stand by you, and comfort you. Do become part of our family of sharing and caring.

    Comment by Phylis Feiner Johnson — December 23, 2011 @ 3:12 PM

  39. Well I hope to learn something new from everyone here. I had my 1st seizure at 14 yrs old and averaged about 1 seizure per year until I was 35 at that point I started averaging 1 every two months for about a year and then I averaged a cluster of 4 every 2 months. I never had auras and almost all those seizures were in my sleep with the exception of one of the clustered seizures occasionally(the 1st one was almost always during sleep). I have taken almost every different med out there and none have worked. Two years ago we went to Mayo clinic and they told me I had been on the wrong meds for years, so they switched me to Depakote, and my liver failed within 3 months. They did find out I had sleep apnea which has been great, all those years blaming meds for making me tired when all along it was sleep apnea. I now take Keppra 3750mg/day. Obviously it does not work either I just got out of the hospital after a 4 cluster seizure last weekend.
    One thing I would like to share with everyone is if you are taking Dilantin, take cacium and vit d, and get bone scans and blood tests.
    I will be 40 this year and was diagnosed 6 months ago with severe osteoporosis of the spine. I fractured my spine 6 places last year one fracture caused paralysis in my left leg.
    So please whatever medicine you are on make your doc do regular checks of your blood and body and question everything and anything about how you feel

    Comment by john williams — January 13, 2012 @ 3:42 AM

  40. Welcome John,

    Your story certainly sounds sad and scary.

    I’m sure you’re knowledgeable about Keppra and its many 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/

    Keppra Generic Seizure Drug Contributing to More Seizures, Side Effects and Death

    http://epilepsytalk.com/2010/07/17/keppra-generic-seizure-drug-contributing-to-more-seizures-side-effects-and-death/

    I took Diantin for many years and ended up with galloping gum rot and hair damage. Nasty stuff.

    Dilantin – Hero or Horror?

    http://epilepsytalk.com/2010/10/06/dilantin-%e2%80%93-hero-or-horror/

    Your last paragraph of advice is important and essential.

    My last question to you is: Have you had the correct — or enough — diagnostic testing?

    Beyond EEGs…Diagnostic Tools for Epilepsy

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

    Comment by Phylis Feiner Johnson — January 13, 2012 @ 4:28 PM

    • Phylis,

      Thank you for the reply, as far as the Keppra I started on a generic and am now on the name brand. Neither on seemed to work at stopping seizures and I don’t have horrible side effects, I am definitely more irritable on the Keppra but I can control it.
      I believe that I have had enough testing, I have had CT, MRI, and at least a 100 EEG’s, the CT and MRI scans don’t show any abnormalities and according to the technician performing the EEG something like 80% of those were in the normal range.

      Comment by john williams — January 13, 2012 @ 8:55 PM

      • Oftentimes testing doesn’t show anything unless you have a seizure at the time. (Seizure by command?)

        That’s why Video EEG Monitoring and Continuous Video EEG Monitoring are favored by so many.

        Especially Continuous Video EEG Monitoring…

        Because Continuous Video EEG Monitoring studies the brain waves OVER TIME. This is accomplished through continuous Video EEG Monitoring, where a patient stays in a special unit for at least 24 hours.

        Antiepileptic medication is stopped for the duration of this test, since the objective is for seizures to occur so the abnormal brain waves they produce can be recorded.

        So, it’s less of a “slam, bam, thank you ma’am” procedure.

        Comment by Phylis Feiner Johnson — January 13, 2012 @ 9:09 PM

      • Part of the reason I believe the meds don’t work is over the years I have stopped the medication cold turkey for several days and I don’t have any seizures, also why I think I have some sort of non epileptic seizures.

        Comment by john williams — January 13, 2012 @ 11:27 PM

  41. Psychogenic seizures are a possibility…interestingly, about 1 in 6 of these patients either already has epileptic seizures or has had them. So different treatment is needed for each disorder.

    Maybe this will help you…

    Epilepsy Versus “Pseudo-Seizures”

    http://epilepsytalk.com/2010/12/27/is-it-really-epilepsy/

    Comment by Phylis Feiner Johnson — January 14, 2012 @ 12:57 AM

  42. has anyone heard of the drug called ONFI. A seiz meds
    it is relatively new one. My dr wants to try me on it. Nothing has helped so far

    Comment by jennifer — January 25, 2012 @ 2:30 AM

  43. ONFI is another name for Clonazepam. Clonazepam is also known as Klonopin.

    Comment by Phylis Feiner Johnson — January 25, 2012 @ 4:52 PM

  44. I think it’s a good idea. Call them and see what you have to do to get into the program. (I’m pretty sure that Onfi is the “parent” cpmpany.)

    Comment by Phylis Feiner Johnson — January 29, 2012 @ 5:40 PM

  45. Jennifer,

    Insurance probably doesn’t cover it because this ‘version” is so new. It wasn’t approved for the US until this year. ONFI is marketed for seizures related to LGS. Since it is a form of Klonopin (clonozepam), I wonder if a generic from another company is sufficient. That may be another reason why it isn’t covered by insurance. If there is a generic, they force you to use it. It could also be because it is a controlled substance. I think insurance companies are really working on limiting the use of controlled drugs because of the abuse problems. There are so many other treatment options for anxiety that you might want to check into. I got off clononzepam a year ago and it was a nightmare because my Dr had me on it long term (I no longer see that dr.) Based on that experience I tell everyone try other things first before going to a controlled drug.

    Also, that clonozepam is used to treat a wide-variety of disorders — restless leg, anxiety, epilepsy, narcolepsy, and who knows what else a doctor is prescribing it for.

    Comment by Tennille — January 30, 2012 @ 9:49 PM

    • is it difficult to get off of it if it doesnt work?

      Comment by jennifer — January 31, 2012 @ 1:31 PM

      • You will know pretty quickly if it is effective. It is one of those drugs that your body becomes dependant on and if you’re on it for a long time some people need an increase in dose. I was on it for 5 years, which is a long time for the normal recommended time. For some, it is the best option. I wanted to get off it because we wanted to have another baby (I wasn’t on it for my first born). My boby rebelled — first with what appeared to be more seizures. Come to find out, it was seizures but also RLS coming back with a vengance (which I didn’t know I had), and cataplexy attacks which are associated with narcalepsy and often mistaken for seizures. Things are much better now, especially since I’m getting the right treatment.

        The best thing to do is try it slowly (insist your doctor start you on the smallest possible dose), listen to your body, and educate, educate, educate yourself. Docs are not God, eventhough some think they are. Also, don’t be afraid to get a second opinion and ask for a few options. We don’t always have to go with the first thing our doctor says we should do. I learned all this the hard way.

        I hope all this helps.

        Forums like this are great for information sharing.

        Comment by Tennille — January 31, 2012 @ 11:28 PM

  46. Jennifer, see the links above.

    Comment by Phylis Feiner Johnson — January 31, 2012 @ 3:35 PM

  47. This has really helped me because I am looking for alternative ways to treat my seizures along with my drugs and people that understand what I am going through . Its really frustrating but I too have thought about a life ending alternative. I exercise twice a day, try to sleep the right number of hours, never drink alcohol, see a therapist, and take my meds at the same time everyday. I am on Lamictal and its been helping but not a total cure. I was thinking about trying Omega 3 in addition to my meds. Has anyone had any success with that? My memory is awful after a seizure and I do not have an aura that I know of but not knowing or remembering is because I don’t remember anything hours before and hours after a seizure. I want to see if the Omega 3 helps with my memory and helps with preventing seizures.

    Here’s a strange thing though… two of my family members started having seizures about a year after I did. No one in the family have never had any. We all have the same seizures (partial seizures). No one else in my family have them besides the three of us.

    I think mine are caused by anxiety. I see my neurologist on next week and I guess I should talk to my neurologist about Klonopin or Ketamine. Has anyone had any luck or tried marijuana?

    I had one recently at a restaurant I don’t remember anything at the restaurant but the bartender at the restaurant had seizures and the people sitting behind me had a daughter that has seizures

    I know I jumped all over the place but

    Comment by Josh — January 31, 2012 @ 5:18 PM

    • First of all, seizures are generally not genetic.

      Just because you have a parent, sibling, cousin or aunt who has epilepsy doesn’t necessarily mean you’ll have it also.

      In fact, if you have a close relative with epilepsy, the chance of you having epilepsy is only about 2-8%, depending on the specific type of epilepsy.

      The risk in the general population is about 1-2%. On the other hand, there is a 92-98% chance for the close relative of someone with epilepsy to NOT have the same condition!

      Is Epilepsy Inherited?

      http://epilepsytalk.com/2009/10/22/is-epilepsy-inherited/

      Next, Omega-3 is great. And B Complex Vitamins – are, without a question, the star. In sufficient quantities, especially those that combine B6, B12, folic acid, thiamine and biotin, are vital to the production of numerous brain chemicals.

      Like the neurotransmitters which serve as the chemical message bearers between your nervous system and brain. The most efficient way to make use of this “brain food,” is to take it in a B complex form, since this contains all the vitamins in the B group. And when combined, they work synergistically together.

      Brain Food for Your Health…

      http://epilepsytalk.com/2011/06/21/brain-food-for-your-health%e2%80%a6/

      And STRESS is #1 on the hit parade of seizure triggers.

      Common Epilepsy Triggers

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

      Also, I’m no doc but I’m on Lamictal and Klonopin (supplemented by Xanax when I need it) and for me, they’ve been a god send.

      Perhaps you should keep a daily seizure diary, noting the time of your seizures, the duration and how you feel afterwards. Perhaps that will give him/her a better idea of what you’re going through.

      Comment by Phylis Feiner Johnson — January 31, 2012 @ 8:14 PM

      • Phylis. I do have them. I just thought it was strange that all three of us have them and they all started within a year of each other.

        Comment by Josh — January 31, 2012 @ 8:43 PM

      • Hi, My twin and I both have seizures. We started 1 yr apart from each other having seizures. She has auras, I dont. I have atonic seizures, She doesnt. I have dailly seizures, she doesnt. They terrify her. They dont terrify me, because, im used to them,since I have them so often.

        Comment by jennifer — February 1, 2012 @ 3:11 PM

  48. I agree. But I have no answer for you. :-(

    Comment by Phylis Feiner Johnson — January 31, 2012 @ 11:22 PM

  49. I’m afraid to take showers because of my seizures..My mom has to be in the bathroom with me just in case I fall. But if I don’t talk the whole time I’m taking the shower, I will have one and fall. Kinda weird.
    But, the doctor has said i’ll probably never grow out of them…I’m still not giving up hope!!

    Comment by Ash — February 1, 2012 @ 6:57 AM

  50. My 2nd seizure was in the shower and it was kind of awful. (We had one of those old-fashioned showers with 4 jets on the wall and one overhead. And the door was old-fashioned where you had to slide the handle round in order to get out.)

    Well, I started going down (remember, it was only my 2nd seizure) and I tried to open the door and I thought I was going to drown.

    I could not for love or money open the door.

    Then I thought, OMG, I’m going to die!

    I threw myself against the door and happily, this time it opened.

    I awoke with my head on the floor and the rest of my body on the transom and in the shower.

    I was too afraid to scream…

    Comment by Phylis Feiner Johnson — February 1, 2012 @ 3:29 PM

  51. Im thinking about buying me a protective helmet, what kind would you recommend?

    Comment by jennifer — February 3, 2012 @ 3:42 AM

  52. I was at hospice today volunteering, when I fell and hit the cart behind it and got me a nasty bump. Fae, the head of it insisted, after many trys to go to the emergency room. I went. I told her that I didnt know how much of the insurance will pay for the rest. She said to not worry about it. It will get taken care of by hospice, with the rest of it. I told her that I will buy myself a helmet to wear, so that I will wear. I’ll probably buy the same one that I had, from when I used to wear for work. Stupid me, I had tosed it after I was let go from work. It was called the Danmar, hard shell helmet with the thick spungy padding on the inside. I will probably buy the helmet covering from Lyrca helmet helmet covers. Then make more of my own. Well good night.

    Comment by jennifer — February 4, 2012 @ 4:20 AM

    • Oh Jennifer, just when you were trying so hard to
      find opportunities to volunteer.

      Do what you must, but don’t give up, please.

      Comment by Phylis Feiner Johnson — February 4, 2012 @ 3:06 PM

  53. I will still be able to volunteer there. I will just have to wear a helmet. I have no trouble wearing it. I did that at my last paid job for 5 yrs. Fae is a spunky woman, she got all sorts of ideas on decorating it for the holidays. I said, “Great”! That will be fun.

    Comment by jennifer — February 4, 2012 @ 3:38 PM

    • Three cheers for Jennifer! You go girl!

      Comment by Phylis Feiner Johnson — February 4, 2012 @ 6:56 PM

      • I saw the Cutest helmet covers! Am hoping that my insurance will pay for the helmet. I called my insurance, and asked them. They said, that my dr needs to write a note stating that is nessessary, for my protection, since I have already fallen and bumped my head. I

        I will make some helmet covers too, with my sewing skills.

        Comment by jennifer — February 5, 2012 @ 2:47 AM

  54. I’m sure your doc will approve it. (After all, who wouldn’t, it’s protective gear!)

    And with your talent, I bet you’ll be able to take the model and make wonderful and beautiful “versions.”

    Comment by Phylis Feiner Johnson — February 5, 2012 @ 3:56 PM

  55. I fell again this morning. I hate it. I havent heard from my dr. if they have sent the autherization to the insurance. Im thinking if just paying for it on my own, and not know if insurance pay for it. what sould I do? Should I call the dr. again?

    Comment by jennifer — February 8, 2012 @ 2:42 PM

  56. I just called to see if she got the message. My folder was on her desk, meaning that she got it. The head receptionist had told me that she head heard my dr. talking about the helmet with another dr. assistant. I dont know what the conclusion was come to yet. I expect to get a call from her, today or so.

    It is so hard for me to keep a diary of my days, and what goes on. The woman, that I ride with to volunteer, told me to write it as a book, and maybe I could even write a book about the life of someone who lives with epilepsy. The troubles that they face. This sounds like a great idea. I started writing this morning. We will see what comes out of this project.

    Comment by jennifer — February 8, 2012 @ 2:56 PM

  57. Your dumb doc probably doesn’t have any info on epilepsy helmets. Why don’t you give him this to read from epilepsy.com?

    Buying a Helmet

    http://my.epilepsy.com/EPILEPSY/SAFETY_HELMET

    Places recommended in the article are: Danmar Products. Show him this page, so he can an idea of the prices.

    https://danmarproducts.c7.ixwebhosting.com/index.cfm?pageSRC=customerCatalog&masterCat=18&subCat=#masterCat18

    Also, there’s http://www.plument.com/ with a very interesting ProtectaCap which is soft and custom fitting. http://www.fallssafety.com/protectacapplus.htm

    They’re more pricey. One for you would run about $228.98 (whew!)

    Comment by Phylis Feiner Johnson — February 8, 2012 @ 3:46 PM

    • im so sick and tired of this dr not giving me any info on this meds, or helmet. the onfi would cost me 243 $ without insurance. At least she could tell me why it is taking her so long about letting me know something. Whether its “i dont know, or no, or yes.”

      Im at the point now, that im just going to buy it and not wait for the insurance.. even though its going to cost me 153 $

      Comment by jennifer — February 10, 2012 @ 3:08 PM

    • is onfi worth fighting for?

      Comment by jennifer — February 10, 2012 @ 3:16 PM

  58. im going to bake something, so that I can get my mind off of this mess. I find baking theraputic. Im sorry my spelling is terrible today.

    Comment by jennifer — February 10, 2012 @ 3:38 PM

  59. If you ate the results of my baking you would not find them therapeutic. More like DEADLY.

    But I’m glad you’re turning positive into negative again!

    Comment by Phylis Feiner Johnson — February 10, 2012 @ 7:51 PM

    • hi, I finally got the writen note from the dr about getting me the helmet, in the mail. Now the question is, how do I go about sending the note to the danmar helmet makers, so that my insurance will pay for it?

      Comment by jennifer — February 11, 2012 @ 12:52 AM

    • you mean negative into positive, not the other way around

      Comment by jennifer — February 11, 2012 @ 4:51 PM

      • Oooops!

        As for the insurance company issue, the only thing I can think of is to call danmar about it. It’s probably not the first time they’ve dealt with this question. Plus, they’d be a lot more interested in helping you than your insurance company. It’s in their best “interest’!

        Comment by Phylis Feiner Johnson — February 11, 2012 @ 8:17 PM

      • thank you very much. I’ll let everyone know how it goes.

        Comment by jennifer — February 11, 2012 @ 8:46 PM

  60. I finally got some good news. Im getting my 1st supply of Onfi this saterday. Thank God. Lets just pray , that it will help.

    Comment by jennifer — February 16, 2012 @ 11:25 PM

  61. Congratulations! Let us know how you do…

    Comment by Phylis Feiner Johnson — February 17, 2012 @ 1:08 AM

  62. someone please help me. I had an atonic seizure at hospice flea market and hhit my head. I refused many times to go with the ambulance, till the manager of hospice told me that they will pay for the bill , on what my insurance didnt cover. Now, the manager is saying, that they wont pay. They probaably said that to get me to go. How am I going to pay for the bill?!! I dont work. I will call the hospice director, but dont know what im going to say to them, or explain to them what happened.

    Comment by jennifer — February 22, 2012 @ 1:04 PM

  63. Here’s an idea Jennifer.

    Call your local Epilepsy Affiliate.

    http://www.epilepsyfoundation.org/aboutus/Find-an-Affiliate.cfm?CFID=1982742&CFTOKEN=70704965

    They will probably have an advocate there, or at least someone to steer you in the right direction.

    Comment by Phylis Feiner Johnson — February 22, 2012 @ 3:52 PM

  64. Thx for this, my class mate had a seisure yesterday n I didn’t know what to do.

    Comment by ibukun — February 24, 2012 @ 1:36 AM

  65. Glad I could be of help. Hopefully, next time, you’ll know what to do!

    Comment by Phylis Feiner Johnson — February 24, 2012 @ 4:01 PM

  66. well, onfi is making me extremely sleepy. Another thing is, im rejected by hospice from working there. It would be a nightmare if the hospital were to say the same thing. Thats all I have left to volunteer at.

    Comment by jennifer — February 27, 2012 @ 2:52 PM

    • Hang in there with the Onfi and let your body to get accustomed to it.

      I’m really sorry to hear about the hospice.

      Comment by Phylis Feiner Johnson — February 27, 2012 @ 3:55 PM

  67. well, i signed up for the cake decorating class for monday, and cant wait till then. I told my father about it, and he said, why not. Go for it

    Comment by jennifer — February 27, 2012 @ 5:39 PM

  68. is it possible to fall more when taking onfi? It hasnt helped yet. Im very frustrated.
    Im getting fitted for a helmet, and really do not feel like going to church with it on. I will wear it when im outside walking my dog, or in the yard.

    Comment by jennifer — March 12, 2012 @ 12:43 PM

  69. I don’t know anything about the Onfi.

    But I do agree that you should wear your helmet whenever and wherever it’s comfortable for you.

    Comment by Phylis Feiner Johnson — March 12, 2012 @ 3:56 PM

  70. isnt onfi the same as one of the meds you take, just by a different name. Clobazam, maybe? The Epilepsy Foundation in
    Winston salem is going to pay for my helmet, some or part of it.

    Comment by jennifer — March 12, 2012 @ 10:00 PM

  71. I take Klonopin, the name brand for Clonazepam.

    The generic for Onfi is Clobazam. And other brand names are Frisium and Urbanol.

    Glad you succeeded in getting the Epilepsy Foundation pay for part of your helmet.

    Comment by Phylis Feiner Johnson — March 12, 2012 @ 11:01 PM

  72. i remember the first time i had a seizure. i was in 7th grade. i remember waking up in the ambulance in front of the school and all the students were just staring at me, wondering if i was ok. i panicked because i didnt know what had happened. im grateful to have wonderful friends that stood by my side the whole time. my life changed that day because i was always embarrassed, shy, and afraid to open up to new people. especially dating girls. because i assumed they would be afraid, make fun of me, or not like me because of my condition. i missed out on a lot of girls that wanted to be my girlfriends because i was scared to admit my disorder. luckily, i only get seizures before i go to bed. im 27 yrs old, and a lot has changed since my first attack.. i have agreat wife, 3 children, and my wife and family are the greastest support i could wish for. im just glad no one i love has to go through the terrible attacks and fear i go through. and i thank god everyday for that..

    Comment by dave — May 24, 2012 @ 11:10 AM

  73. Hello, there is another great and healthy way to help prevent seizures! Try a virgin coconut oil called Memory Oil and put it in your food such as, bagels, rice, spaghetti, pasta, corn, popcorn and etc. this oil is very healthy and it really can help prevent seizures. I hope this helped you! MEMORYOILS!

    Comment by Rodney Downsling — July 21, 2012 @ 9:45 AM

  74. That’s sure different Rodney, but very cool. What do you look for and where do you buy it?

    Comment by Phylis Feiner Johnson — July 21, 2012 @ 4:42 PM

  75. For almost a year (I was 21 when I last had a serious seizure) I had been seizure free. Earlier this week, I had not one petite mal, but TWO of them. I know what triggers them sometimes and other times my family, friends and I have a hard time discerning what it was. Anxiety, stress, fear, overdoesing on sugar and a variety of other things trigger these. I dislike them and have severe panic attacks afterwards. Any idea how to lessen the fear when you lose all control? I just feel scared and it didn’t help not knowing there was anyone around. I tend to go within myself if no one is there, but I am lucky I have loving, kind and understanding parents who still help me through my life at the twists and turns of life. Thanks again for reading this. :)
    ~Spirit~

    Comment by Spirit — August 1, 2012 @ 9:02 AM

  76. First of all Spirit, have you tried keeping a Daily Seizure Diary? Start by writing down your sleep patterns. Then what you ate and when…your daily activities (including emotions, feelings)…how you feel before a seizure (Auras? Triggers?)…how you feel and act afterwards (Postictal state) and then if you can, the duration of the seizure.

    Most people feel fear about oncoming seizures. The panic of ““What if I have a seizure? What will people do? What will they think of me?” But you can’t let that lead to isolation, which it easily can.

    Don’t give up on yourself and don’t let epilepsy win the battle!

    As for Panic Attacks…

    It might be because your serotonin level is low, so you’re feeling a sense of “fight or flight.”

    But anxiety is actually related to epilepsy in more specific ways. It can occur not only as a reaction, but also as a symptom, and in some cases, as a side effect of seizure medicines.

    Other reasons to consider are:

    Hyperventilation caused by anxiety can trigger a seizure.

    A person can have a panic attack which may eventually turn to a seizure, or that seizure may be the result of a panic attack.

    The worst part is that neither just “goes away.”

    But happily, there are some solutions. Here are the ones that work best for me.

    1. Deep breathing. I breath in through my nostrils and hold my breath for ten seconds (although, some people do it for 5 seconds) and then exhale to the count of ten, through pursed lips. (Sort of like blowing out a candle, as Candi so cleverly put it.) The beauty of it is that you can do it anytime, anywhere, and forever long as it takes when that nasty panic starts taking over.

    2. Visualization. I think of a particular happy experience (or two) and sort of let it take over my body. Like watching the waves crash. Or eating a lobster roll in Maine.

    3. Music. I take 15 minutes that’s just mine, get in a comfy chair, put on headphones and forget about the rest of the stuff. It’s so relaxing, that sometimes I feel like I’m transported to another place. Away from my fears.

    4. Walking a few miles or so. Just focusing on my surroundings. Sometimes it’s a trees or bird flying by, a beautiful sunset, Or maybe watching other people (I admit it, I’m an incurable people watcher), cloud formations. Whatever presents itself before me. Just taking in my surroundings.

    5. I do run an epilepsy support group. (You could join one.) It’s helpful to hear other people’s fears and concerns and we all try to help each other. There’s a feeling of accomplishment, community, sharing and of course, making new friends. After all, aren’t we all in this together? (Adult Epilepsy Support Groups http://epilepsytalk.com/2011/05/20/adult-epilepsy-support-groups/)

    6. I try something new that’s creative. (Obviously, after 33 years, it’s not writing.) Right now I’m trying to learn more about my camera, so I can take some real pictures, other than those of my cat. ;-)

    7. There’s meds, like Klonopin — an anti-seizure, anti-anxiety med…and cognitive therapy (which has done a world of good for me.)

    I’d love to be able to meditate, but the attention span just isn’t there.

    Try deep muscle relaxation, but who has the time?

    Or finally, confront my fears and think of what’s the worst thing that could happen?

    Hope this helps…

    Comment by Phylis Feiner Johnson — August 1, 2012 @ 9:52 AM

  77. My husband is affected with epilepsy and used diylantil tables and still I fine no changes what can I do

    Comment by tiffany bobb — August 7, 2012 @ 6:36 PM

  78. Tiffany, have you tried other drugs or other drug combinations?

    Perhaps it’s time for a consult with another doc and more diagnostic testing.

    Here’s the 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.

    Also, here’s a list of diagnostic tests which you might consider…

    Beyond EEGs…Diagnostic Tools for Epilepsy

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

    And finally, here’s the 2012 Best Neurology & Neurosurgery Hospitals in the U.S.

    http://epilepsytalk.com/2010/02/23/best-neurology-neurosurgery-hospitals-in-the-u-s/

    These are ranked annually, based on several different factors, by The U.S. News and World Report.

    Tiffany, I strongly believe there’s an answer and a solution, you just haven’t found it yet.

    Comment by Phylis Feiner Johnson — August 8, 2012 @ 9:34 AM

    • Wow! I’ve been reading through everyone’s story and all have been touching yet so inspiring. I don’t know if to call myself an epileptic. I had my first ever seizure in 1998 when I was 16. Was assisting a neigbour in fixing his bus when it happened. Next thing I know is I’m in d hospital surrounded by friends n family all looking very worried and relieved to see me come through. Mine was as a result of malaria fever but. I had my 2nd fever in 1999 @ age 17 and it was while I was having another fever. The next one happened in 2002 while playing basketball in a local court with lots of people around. D next was in 2004 followed by another one in 2007 and I just had one last two weeks sending everyone around me into panic and confusion. I realized my seizures often occur when I have malaria and it’s usually plasmodium falciparum I have. The same one responsible for cereberal malaria. Now my question is is there anyway I can prevent these seizures from happening without any chemical drugs? Doctors prescribed phenobabtal but it only makes me drowsy! I’ve lost all my self confidence to seizures and I can no longer do d things I used to cos I have both my shoulders dislocated from falling in awkward positions. I read about the buteyko breathing technique and I’m curious if anyone has actually tried it. Thanks for reading and sorry I couldn’t keep my post short. I tried to :)

      Comment by ladi — August 13, 2012 @ 8:43 AM

  79. Hi Ladi,

    First of all, if you’ve had more than two seizures, you’re a member of the “club.” (An exclusive priviledge!)

    Yes, intense fever can trigger seizures, but it sounds like that hasn’t always been the cause. How about keeping a Daily Seizure Diary, tracking your sleep patterns, what you ate and when, the weather conditions, your activities, how you feel before a seizure (Auras? Triggers?) how you feel after a seizure, and if possible, the length of the seizure. That might give you a better idea of the cause. (And it may help your doc, too.)

    As for pheno, isn’t there something else you can take? If you told your doctor about your reactions and side-effects, perhaps he/she could come up with something better. (I know from experience that phenobabtal drains my brain…and the rest of me.)

    I’m a firm believer in breathing. But mine is quite simple. I breathe in through my nostrils, to the count of ten. Hold it and then breathe out with pursed lips (like blowing out a candle) to the count of ten.

    You might try visualization or music http://epilepsytalk.com/2011/06/13/poetry-is-music-to-the-soul/ or some kind of relaxing companion to your breathing.

    And please: Don’t let epilepsy rule your life. If you do, you simply become a victim. It’s up to YOU to ultimately decide your fate.

    Comment by Phylis Feiner Johnson — August 13, 2012 @ 9:20 AM

    • Thanks a lot for your quick response. I appreciate. Wow, and I always thought my seizures were only due to parasites in my brain. That just changes everything for me. And can a lack of sleep trigger seizures too? I notice they often occur when I don’t sleep well through out the night. I’m 30 years old and I’ve had seizures 9 times since I was 16 when it really started! Does it still make me an epileptic?
      Sent from my BlackBerry® smartphone provided by Airtel Nigeria.

      Comment by dogmaticgoblin@yahoo.com — August 13, 2012 @ 9:33 AM

  80. Once you’ve had 2 seizures, you’re a member of “the club”. (A very exclusive club.)

    Here’s an article on:

    Common Epilepsy Triggers

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

    Unfortunately, since you live in Nigeria, I can’t recommend any neurologists. But I DO suggest you keep a Daily Seizure Diary, noting your sleep patterns, what you eat and when, daily activities (including stress or unpleasant ones), how you feel before a seizure (triggers? auras?), during a seizure, afterwards and, if you can, the duration of the seizure.

    The diary will help you get a better understanding of your seizures and will help your doctor immensely.

    And here are some suggestions to prepare you for your doctor’s visit.

    Three Secrets to Better Care from Your Doctor

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

    Keep me posted on your progress and I’ll try to help you with any information I can…

    Comment by Phylis Feiner Johnson — August 13, 2012 @ 2:49 PM

    • Thank you so much sir, God bless you!!!

      Comment by ladi — August 13, 2012 @ 3:59 PM

      • Ummmm…I’m a woman! ;-)

        Comment by Phylis Feiner Johnson — August 13, 2012 @ 6:10 PM

      • Lol!!! Sorry ma’m my bad. God bless you ma’m. Lol
        Sent from my BlackBerry® smartphone provided by Airtel Nigeria.

        Comment by dogmaticgoblin@yahoo.com — August 14, 2012 @ 2:24 AM

  81. That’s alright. You’re forgiven. :-)
    But DO let me know your progress and how you’re doing, please.

    Comment by Phylis Feiner Johnson — August 14, 2012 @ 10:40 AM

    • I sure will! Thanks again and again!

      Comment by ladi — August 14, 2012 @ 5:24 PM

  82. Hello,
    I am curious as to experiences anyone has had with tegretol xr. I have an adult child who has complex partial seizures (which lately are increasing in frequency)and has been taking this medication for over 15 years. I was reading older posts and everyone else seems to be taking something else. I am very concerned about the increase in epileptic episodes and am also trying to hear from people who know anything about tegretol.
    Thank you all!

    Comment by Marie — August 23, 2012 @ 4:20 PM

  83. Marie, here’s an interesting site about what patients are saying about Tegretol XR and Complex Partial Seizures with 57 posts…

    http://treato.com/Tegretol+XR,Complex+Partial+Seizures/?a=s

    Comment by Phylis Feiner Johnson — August 23, 2012 @ 6:03 PM

  84. i have seizure 1yr before… again the seizure is back in this year those it mean that it is the sign of epilepsy…will i need to take epilepsy medicine or will it go itself.

    Comment by pratik shrestha — July 13, 2013 @ 5:21 AM

  85. You MUST go to a neurologist and get tested. Find out exactly what the story is and take it from there.

    IT WILL NOT GO AWAY BY ITSELF!

    Comment by Phylis Feiner Johnson — July 13, 2013 @ 10:30 AM

  86. i had visited the doctor..i even had MRI test but they say there is nothing in MRI test so i m in great confused..and is there any disease that make us shaky & unconsiuous while sleepying??,,

    Comment by pratik shrestha — July 14, 2013 @ 3:24 AM

  87. Yes. There is the possibility of nocturnal seizures, sleep apnea, or a combination of the two.

    Interestingly enough, studies have shown that 10-45 percent of people with epilepsy have seizures that occur predominantly or exclusively during sleep or occur with sleep deprivation. (Nocturnal seizures.)

    The good news is that up to 80 percent of them achieve control of nocturnal seizures with medication.

    But, nocturnal seizures are often a challenge to diagnose and often they don’t show up on most diagnostic tests.

    That’s why Video EEG Monitoring is often recommended.

    Sleep apnea is one of the most common and important sleep disorders, because of the possible serious consequences.

    Epilepsy And Sleep Apnea — A Dangerous Duo

    http://epilepsytalk.com/2013/06/10/epilepsy-and-sleep-apnea-a-dangerous-duo/

    Because of the interrupted breathing, seizures can occur.

    There can be symptoms like grinding your teeth, a dry mouth, morning headaches, erectile dysfunction, memory deficits, and snoring.

    But most importantly, this sleep deprivation provokes seizures and epileptiform discharges in some people with epilepsy.

    If sleep apnea is suspected, or your sleep is just so fragmented that you’re having seizures and difficulties during the day, a sleep study is highly recommended.

    Sleep studies (Polysomnography) with expanded EEG aids can indicate the difference between seizures and parasomnias — a different kind sleep disorder — and diagnosis if the condition is truly sleep apnea, which can exacerbate seizures.

    Treating sleep apnea may lead to improved seizure control. Which makes this diagnosis especially important in terms of sleep quality and treating epilepsy.

    I hope this might lead to some resolution, Pratik

    Comment by Phylis Feiner Johnson — July 14, 2013 @ 10:08 AM

  88. ive tested EEG..it shows normal ..but i have pain in right side of my head..& i went 2 doctor & he suggested to take NAvaporate 700mg medicine for 2 yrs.

    Comment by pratik shrestha — July 14, 2013 @ 12:48 PM

  89. I still think you should have a sleep study done to see if it could possibly be Nocturnal Seizures or Sleep Apnea.

    Comment by Phylis Feiner Johnson — July 14, 2013 @ 12:58 PM

  90. hi, just wondered if someone is suffering from similar problem as this, ( keep getting seizures frequently from the past year or so, recently got 6 of them in a spam of 5 hrs. ) since then was in hospital for a month. the doctor says have some other problem as well. where the body itself is producing some thing inside dat is causing this so frequently . any help would be great. thanks

    Comment by lokesh — September 14, 2013 @ 9:04 AM

  91. One month in the hospital is pretty radical. I presume all of the following tests have been run:

    Beyond EEGs…Diagnostic Tools for Epilepsy

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

    I think your doc may suspect an inflammation problem — or autoimmune epilesy — which is very difficult to diagnosis:

    Autoimmune Epilepsy — Cause of Previously Unexplained Seizures?

    http://epilepsytalk.com/?p=5529&preview=true

    I’m glad for one thing and that is he is pro-active. Ask him about autoimmune epilepsy, there might be some answers there.

    Comment by Phylis Feiner Johnson — September 14, 2013 @ 10:23 AM

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    Comment by face yoga — December 4, 2013 @ 2:58 AM

  93. Any way I can help you, I will try.

    ALL of us are here to teach, learn and share.

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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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