Epilepsy Talk

Epileptic Synesthesia: What Is It? | September 7, 2019

A friend of mine with TLE, told me he had synesthesia and I didn’t have a clue what he was talking about. And so, I set to find out exactly what this mysterious sounding condition was…

First of all, Epileptic Synesthesia is pretty rare.

It occurs in 4% of temporal lobe seizures and is theoretically caused by the actual electric discharge or abnormal stimulation of the brain in a seizure.

Sight, sound, touch, taste (and, much less often, your sense of smell) sensations can occur simultaneously and also involve involuntary movement.

An example is the sensation of flashing lights, a taste, a feeling of heat rising, and a high-pitched whine.

Here are three other (rather alarming) examples:

You might taste bile, along with tingling in the left wrist, twitching of the left corner of the mouth, and muscular contractions on the left side of the body…

Or you could feel like you have a lump in your the throat, accompanied by mouth and tongue movements, flashing lights in the right upper fields and a bitter taste…

Hearing the word “five,” you might see the number “5” projected on a gray background. Letters turn into colors…colors turn into light.

It’s sort of like a bad acid (LSD) trip. Or more simply, it can feel like a cascade of different auras occurring in tandem, just before a seizure.

However, it’s important to note that just as few people with epilepsy have synesthesia, many people with synesthesia do NOT have epilepsy.

Although medicine has known of synesthesia for almost three hundred years, after interest peaked between 1860 and 1930, it was forgotten, remaining unexplained not for lack of trying, but simply because psychology and neurology were premature sciences.

Now, after decades of neglect, it’s a hot topic of interest.

And neuroscience is particularly interested in synesthesia because it might lead to a better understanding of consciousness, the nature of reality, and the relationship between reason and emotion.

On the other hand, for over a century, synesthesia has also been used to refer to artistic and poetic sensitivities.

Dozens of novels featuring synesthete-characters have been published, like Frankenstein, by Mary Shelley.

In Frankenstein, the creature says “It is with considerable difficulty that I remember the original era of my being: all the events of that period appear confused and indistinct. A strange multiplicity of sensations seized me, and I saw, felt, heard, and smelt, at the same time…”

Sort of like a twisting of the senses or crossed wires.

But believe me, you don’t have to be Frankenstein to have synesthesia!

The famous artist David Hockney, perceives music as color, shape, and configuration, and uses these perceptions when painting opera stage sets but not while creating his other artworks.

Russian painter Kandinsky combines color, hearing, touch, and smell.

Composers include Duke Ellington, Franz Liszt and Korsakov,

Harpist and fiddler Tina Larkin experiences music/color synesthesia.

And, although it hasn’t been verified, Pharrell Williams, of the groups The Neptunes and N.E.R.D., claims to experience synesthesia and to have used it as the basis of the album Seeing Sounds.

And this was news to me: Billy Joel and Itzhak Perlman have synethesia!

Plus, Syd Barrett, founder of Pink Floyd, is thought to have had synesthesia.

In closing, I’d like to write down some thoughts that my friend with TLE Synesthesia wrote:

“To explain seems senseless, but I was able to feel the sounds, the senses are so ENHANCED that the waves became focused confusion.

The edge is an odd place. A date, time, SURE, will say goodbye and check in no sweat and lol at ‘IT’ But the unknown is my demon now…

Losing time in large blocks is something we joke with UNTIL it happens. It’s like having a stroke but then recovering 100′s of times.”

— Rick Wichitarick

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Resources:

http://wearcam.org/synesthesia/synesthesia_long.html

http://en.wikipedia.org/wiki/Synesthesia_in_literature

http://www.psych.usyd.edu.au/staff/alexh/research/history/Frankenstein.html

https://www.rightdiagnosis.com/e/epileptic_synesthesia/intro.htm

http://www.physicsforums.com/showpost.php?p=2700096&postcount=93

http://en.wikipedia.org/wiki/Synesthesia#Synthetic_synesthesia

 

 

 

 

 

 


47 Comments »

  1. Goodmorning Stranger 😃. This is me 😊. I apologize I haven’t been able to respond to any of you articles, but I’ve been having a heck of time with my epilepsy!! OH YES IT DOES HAPPEN TO ME!!!!! A lot of the times I don’t think people really understand the feelings, thoughts, and why we act the way we do when we are not well!! Therefore when we do tell them they would rather not listen because they claim they already know or their too afraid to hear us or they just don’t want to because either they don’t care or already know everything (in their minds) lol. The funny part is it took me 9 YEARS TO FINALLY get a written form of an MRI, EEG and so on from my doctor (a new family practitioner) in order to find EXACTLY what I MAY HAVE and results from tests completed 9 years ago!!!!! Only to come to discover my right side of my hippocampus brain is smaller than my left side and the right works twice as hard!!!!! Apparently I have right temporal lobe (MIXED) epilepsy and “mesial temporal sclerosis” and some type of “cortical dysphasia in the anterior right temporal lobe with some kind of probable retention cyst”. Now 9 YEARS LATER (without surgery) I’m beginning to have issue with numbness and tingling in my left foot, leg and arm. Plus I’m sodium deficient and my blood pressure is normally LOW is now low on one end and high on the other!! It is SCAREY A BLEEP and it HURTS MY NECK AND HECK LIKE BLEEP TOO!! Now even high pitched noises hurt and make me plug my ears along with police and ambulance lights!! If I had a proper diagnosis back them maybe I would to at least think about it!! But at least now my children are almost ALL FLOWN THE COUPE and HOPEFULLY there are a lot more DIFFERENT BETTER “Brain surgeries” out there that won’t cause major problems and be able to help me more than what I am going through now. I apologize I haven’t been able to visit for a bit, but please know I GREATLY APPRECIATE YOU Phylis and EVERYTHING YOU DO FOR US!!!!!!! Thank you 😊🙏🏼❤️🦅😇💗😊😘😘😘😘😘

    Liked by 1 person

    Comment by Kathy S.B — September 7, 2019 @ 11:08 AM

  2. Oh and I have had a confirmation from my doctor that either I have or could possibly have something called “HH”. Their not quite sure what to do? So I am trying very hard (at this point) waiting for a confirmation date to see a neurologist at one of the major hospitals to see if I can either have surgery or get some form of help for myself. Because I want to be here for my husband, children and MAYBE GRANDCHILDREN one day. In the meantime try and keep busy and hope and pray!! Please be well and thank you Phylis 😊🦅💗

    Liked by 1 person

    Comment by Kathy S.B — September 7, 2019 @ 11:38 AM

  3. I’ve MISSED YOU TOO 😘. I have thought about the VNS and my husband (who actually WAS an electrician) was kind of Leary about them!! Mainly because he’s afraid of when we have thunder and lightening storms (the amount of electricity in a lightning bolt and IF I’M OUTSIDE!!) I have actually TRIED (before summer in June) TO GET INTO THEM and I FINALLY (after so many visits to er and I.V.’s and needles got a reference to our nearest major hospital in Alberta (Calgary, AB). I FINALLY received a call yesterday from them. Apparently their trying to locate my file, go over it and then I guess we’ll see from there!! I was mentioning to my husband “I’m wondering if they can perform the LITT on me? Then there’s no cuts to my skull and it’s CUTTING EDGE SURGERY!!”. But right now I just NEED TO GET IN TO A NEUROLOGIST!!!!! Lol times waiting and I’ve been telling my doctor for QUITE AWHILE “PLEASE HURRY UP!!!!!!!”. So now I have to take “6 sodium tablets daily as well!! For me I KNOW they have to hurry and it’s pretty hard to get into the TOP-RATES HOSPITALS for NEUROLOGY & NEUROSURGERY!!!!!!! You sure hit the head on the nail with the “SYNTHENASIA”!!!!!!!!!!! WOW!! If my husband and children (my children don’t know yet) were able to come with me to wherever and we covered financially I would GO ANYWHERE RIGHT NOW!!!!!!! As for the rest of my extended family NO USE creating telling them and creating more unnecessary drama for me, my husband and children. Synesthesia however IS NOT FUN TO HAVE!!!!! Lol plus it think those closest to me think I’m crazy!! Lol. I’m trying to think of my healing time as well as will I remember my husband, children, and old people and brother AND YOU afterwards? IF THEY CAN DO SURGERY?! Thank you 😘

    Liked by 1 person

    Comment by Kathy S.B — September 7, 2019 @ 12:16 PM

    • First you have to find a neuro in the hospital of your choice. Can your primary care physician recommend one? Do you have another type of doctor who can help you?

      I know this is a long shot, but could you get a reference for a neurologist or neurosurgeon from the hospital itself?

      Liked by 1 person

      Comment by Phylis Feiner Johnson — September 7, 2019 @ 12:27 PM

      • I almost feel like maybe I do have to find a different hospital!!

        Liked by 1 person

        Comment by Kathy S.B — September 7, 2019 @ 12:45 PM

      • If this one is not responding, perhaps you do. Just be careful of their certification and recommendations from other patients. They’re the best judges.

        The following neurologists were recommended by previous patients:

        CANADA

        Dr. Frederick Andermann, Head Neurologist, Montreal Neurological Institute, Montreal

        Dr.Warren Blume, London, Ontario

        Dr. Joseph Bruni, St. Michael’s Hospital, Toronto, Ontario
        — Epileptologist

        Dr. Hlynur Georgsson, Toronto, Ontario

        Dr. Marika J. Hohol, St. Michael’s Hospital, Toronto, Ontario

        Dr. M. Javidan, Vancouver General Hospital, Vancover

        Dr. Richard Mclachin, London, Ontario

        Dr. Muratoglu, Associate Professor at the University of Alberta, Edmonton

        Dr. A. Ogunyemi, St. John’s, Newfoundland

        Dr. Donald Weaver, University Health Network, Krimble Neuroscience Center, Toronto Western Hospital, Toronto, Ontario

        And these neurosurgeons were recommended

        CANADA

        Dr. Girvin, London, Ontario

        Dr. Andre Olivier, Montreal Neuro, Montreal

        2019 Patient Recommendations for TOP Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors

        https://epilepsytalk.com/2019/01/03/2019-patient-recommendations-for-top-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

        Liked by 1 person

        Comment by Phylis Feiner Johnson — September 7, 2019 @ 12:57 PM

      • Goodafternoon Phylis 😀. I was wondering do we (as patients) get to pick who would like to see in terms of a neurologist or do we have to be referred? (In Canada). Or do we have to wait until they decide whether or not to allow us to be their patients? I apologize but I’m trying to figure things out without stepping over my boundaries. Thank you and please have a very good day today 😊🦅❤️

        Like

        Comment by Kathy S.B — September 7, 2019 @ 5:00 PM

      • I think you have to wait until whether or not the docs can take you on as a patient. In other words, you have to be referred.

        You’re not stepping over your boundaries, I just don’t have the answers. 😦

        Liked by 1 person

        Comment by Phylis Feiner Johnson — September 7, 2019 @ 5:11 PM

      • That’s alright. I apologize for asking lol NEITHER DO I!!!!! Lol I guess we’ll find out HOPEFULLY DARN SOON!! That’s BETTER THAN LATER!! 😘

        Like

        Comment by Kathy S.B — September 7, 2019 @ 5:15 PM

  4. Shucks when it comes to neurology I think even our own doctors get baffled!! I am SO AMAZED with the services in different countries and even provinces her in my country!! They seem to be a lot faster and more helpful elsewhere, but I could be wrong. Thank you

    Liked by 1 person

    Comment by Kathy S.B — September 7, 2019 @ 12:55 PM

    • Kathy, I was referred to Dr. Muratoglu when I was brought to Emergency by ambulance to Grey Nuns, Edmonton. It was the ER doc that referred me. He does have a long wait list (800 he says) but because I was referred from an ER doc I saw him within a few days. He’s the best in Edmonton, according to ratemds.

      Liked by 2 people

      Comment by Marlyn — September 7, 2019 @ 8:39 PM

      • Goodevening Marlyn 😀. It’s just sad when we have to be rushed into the hospital either by spouses, family or friend’s in order to FINALLY GET HELP!!!! I think that’s what I find the most frustrating in a disheartening way!! I heard the wait lists are long and it’s almost as though I FEEL LIKE I HAVE TO WAIT FOR A SEIZURE OR JUST WAIT in order to be able to FINALLY SEE a neurologist anywhere here in our province!! Lol those ambulance trips are TOO COSTLY when my income is on AISH!! Plus NORMALLY certain things would be covered IF I WASN’T A STATUS PERSON!! But because I live off the reserve we have to pay for ALMOST EVERYTHING like a normal citizen in our country and AISH DOES NOT HELP ME with anything health related because of that. So we have to (like you probably) ALWAYS BE PREPARED!!!!!!! Thank you for your quick response I greatly appreciate it and yourself 😘. Please be well and take care 💗

        Liked by 1 person

        Comment by Kathy S.B — September 7, 2019 @ 10:51 PM

    • Well Kathy, I sure hope you can get the help you need. You can request to be referrred to any neuro of your choice. I like Dr. Muratoglu because he is thorough … I’m sure I’ve had many tests I didn’t need.
      I was brought by ambulance because these seizures weren’t at home. I had kind strangers assisting me. Ambulance trips were not my choice (I didn’t have the conscious ability to make that decision) and it was for the best. I got an amazing neurologist (he’s had students under his tutelage in his office from Europe) during some of my appointments.
      But you are so right about having to be prepared for any situation. Always have extra medication with you. Extra insurance. No such thing as a free ambulance ride. You know, I googled the price of an ambulance trip in Los Angeles (I have family there) and it’s 10x the price as Alberta! Crazy! Now I have to make sure my travellers insurance covers that much!
      Sometimes it’s all a bit overwhelming.
      I hope you find the help you need soon. It’s been way too long for you.
      Have a good evening.

      Liked by 2 people

      Comment by Marlyn — September 8, 2019 @ 10:29 PM

      • Goodevening Marlyn 😃🙏🏼❤️. To me YOU FEEL LIKE AN ANGEL YOURSELF!!!!!!! 😊🙏🏼🦅😇🐶💗😘😘😘😘😘😘😘. THANK YOU SO SO MUCH!! 😘. It’s is SCARY lol but of course (as a wife, mother, friend) we have to be STRONG AND HAVE FAITH!! The two movies mentioned (I know ONE IS SO TRUE) as for the other one MAYBE ITS SO TRUE THE THOUGHT HURTS MY HEART! However once again IT IS ALSO TRUE!! Odd how we never think anything would happen to us IF WE TAKE CARE OF OURSELVES, but when it does it feels like we didn’t do or make GOOD MEMORABLE MEMORIES for our loved ones (including our spouses, children, family and friends) FAST ENOUGH!! 💗. Thank you for acknowledging the length of time and a professional doctor to get too!! Now just to get there!! That seems to be the problem in my case. I will keep you informed 😘. Thank you VERY MUCH and please also have a VERY GOOD EVENING AS WELL!! 🙏🏼🦅🐶😇❤️😘

        Liked by 1 person

        Comment by Kathy S.B — September 8, 2019 @ 11:24 PM

  5. Could socialized medicine be the problem?

    Like

    Comment by Phylis Feiner Johnson — September 7, 2019 @ 12:58 PM

  6. Isn’t is that the kind of medicine that Canada practices?

    Socialized medicine is any of various systems to provide the entire population with complete medical care through government subsidization and regularization of medical and health services.

    Like

    Comment by Phylis Feiner Johnson — September 7, 2019 @ 1:13 PM

  7. Maybe it’s TOO MUCH MEDICINE?! Apparently because I have been on the same medication for 41 years now (I’m 49 years old now 😊) the medication is either “backfiring” or become “ineffective” now”. I must admit “SYNESTHESIA” to those of us who MAY HAVE IT is “NOT EASY OF FUN AT ALL!!”. Yes it affects all of senses.
    Taste- for me (metallic or blood)
    Sight- for me blinking lights, black and white or bright green
    Smell- for me almost like a burning something
    Feeling- butterflies in my stomach, stomachache, a tingling feeling, heart pounds and a HEADACHE!!!!!!! Plus I get either really hot or really cold fast. It hits me fastest with fear.
    Hearing- almost like a buzzing noise in my heat or VERY HIGH PITCHED NOISE!! (I had to change my alarm system because of it. Lol I couldn’t get to the box to turn it off in time!!). I try to distract my brain and fight it (bite my cheeks, tighten my legs, clinch my hands to stop it, but it wins a good portion of the time. Worry and stress are ALWAYS MAJOR FACTORS!!!!! So I try to stay calm and quiet and do things I like to do. However it’s the tingling that catches my attention first!! 💗

    Liked by 1 person

    Comment by Kathy S.B — September 7, 2019 @ 1:55 PM

  8. Anti-Epilepsy Drugs Lose Effectiveness Over Time…

    https://epilepsytalk.com/2018/08/06/anti-epilepsy-drugs-lose-effectiveness-over-time/

    Liked by 1 person

    Comment by Phylis Feiner Johnson — September 7, 2019 @ 1:58 PM

    • I don’t like complaining or saying much to anyone, but if I may? I can still hear everyone on the other end of my seizure and if I am being spoken to or treated with kind sincerity and love most of the time I will do as I am told to and I DO HEAR!! I just MAY NOT REMEMBER WHAT WAS SAID!! For example I had an seizure at a sporting activity one time. A close friend who was nurse came to help me, but I didn’t respond to her. However the minute my husband spoke I heard him and listened and did as he said, I just didn’t remember afterwards (what happened during my seizure). All I know is I was trying to get away and didn’t quite make it!!!!! At the next event (2 days afterwards) I went but I also thanked the my friend for all her help and apologized to her. She then told me That me and my husband actually taught them that “epileptic’s CAN HEAR AND RESPOND DURING A SEIZURE!!!!!!!” And thanked me for teaching them that!! Oh thank heavens SHE IS SO KIND AND GENTLE WITH THE BIGGEST HEART IN THE UNIVERSE!!!!!!! 😘🙏🏼🦅😇💗❤️😘😘😘😘😘

      Liked by 1 person

      Comment by Kathy S.B — September 7, 2019 @ 2:29 PM

      • Oh Kathy, don’t you realize that in your own way you were educating her — with kindness and gratitude?

        Just like you are, a kind and caring person, seizures or not. 🙂

        Liked by 1 person

        Comment by Phylis Feiner Johnson — September 7, 2019 @ 4:57 PM

      • Thank you 😘😘😘😘😘. Lol I often tell my husband and children “HONESTY IS ALWAYS BEST POLICY!! But we can OCCASIONALLY SLIP IF ITS MEANT FOR THE POSITIVE!! And MY EPILEPSY DOESN’T AFFORD ME THE RIGHT TO DO THAT OFTEN OR DRINK “ALCOHOL, TAKE ILLEGAL DRUGS OR GAMBLE IN A CASINO!! MAYBE THAT’S A BLESSING IN DISGUISE!! 😘”

        Liked by 1 person

        Comment by Kathy S.B — September 7, 2019 @ 5:13 PM

      • Those casino “ding, dings dings” would drive me straight out of my mind!

        Liked by 1 person

        Comment by Phylis Feiner Johnson — September 7, 2019 @ 5:15 PM

      • Lol 😂 I Live a block and half away from the train tracks in my town. Lol 😂 I SWEAR I CAN’T SLEEP WITHOUT THE HORN NOW!!!!! Lol 😂😂😂😂😂 or MY HUSBAND’S CPAP MACHINE!!!!!!! 😂😂😂😂😂

        Liked by 1 person

        Comment by Kathy S.B — September 7, 2019 @ 5:18 PM

  9. THANK YOU PHYLIS!! 😘😘😘😘😘. Just as I THANK YOU FOR BEING OUR (EPILEPTICS AND FAMILIES AND FRIENDS) FOR DOING WHAT YOU DO FOR US!!!!!!! Just so you were AT LEAST TOLD TODAY “YOUR ARE GREATLY APPRECIATED!!!!!!! 😘🙏🏼🦅😇💗😘😘😘😊😘

    Liked by 1 person

    Comment by Kathy S.B — September 7, 2019 @ 5:04 PM

  10. Kathy,

    I “Hear You,” sweetheart! “Bits and pieces” of what you wrote, “Stand Out!” Like the “RINGING!” OH, how I wish I would stop it! 24/7! It NEVER Stops! I have always labeled it as, “Ringing In The Ears.” Right now, the pitch is VERY High! And on both sides! No wonder I don’t hear my cellphone, a lot of times. ***The “RINGING!” This can also “trigger” another event.

    Earlier, I went to a meeting for those who have *Fibromyalgia, which is another name of a symptom, I seem to have. That you mentioned about your leg going *numb, I think? I know ALL About it! And *PAIN?! Today, I have *Lidocaine Patches stuck to the back of my legs and *sitting area. But compared to what you are going through? Not much.

    I looked into the VNS, when it FIRST came out. That model was too big for my size body. They have made much-smaller batteries, I am told. Now, I’m *68 years old. Have had TLE since 6 months old and have been taking anti-seizure meds since age *4! I am praying that *Medical Marijuana will REALLY be legal here, soon, with about 3% THC. I hear good things from others, about this, who are living in areas where it is already legally allowed. Some have gotten off ALL their anti-seizure meds. A dream, for sure.

    I’m not claiming to have what you do. What Our Phyllis wrote about. But I can understand about *some of the symptoms you are having.

    Phyllis, If you ever find out information on a way to “get rid of *ringing,” please let me know. Sometimes, a sleeping pill has difficulty, competing.

    Thanks, Friend.

    Liked by 1 person

    Comment by Effie Erhardt — September 7, 2019 @ 5:24 PM

    • Goodevening Effie 😊. Oh THANK YOU THANK YOU THANK YOU!!!!!!! I was beginning to feel like an alien!! I also have “endometriosis” and I tried to teach myself to PAY ATTENTION TO MY BODY!! That way when I get a stomachache I know to try and relax because I’m probably really scared or worried!! I actually jumped off of our truck one night because I couldn’t handle it or the pain of it!!!!! And as for the marijuana I am SINCERELY CONSIDERING IT AS AN OPTION IF ALL ELSE FAILS and I’m left WAITING!!!!!

      Liked by 1 person

      Comment by Kathy S.B — September 7, 2019 @ 11:13 PM

    • Effie, have you ever thought that you could have Tinnitus? It’s the perception of noise or ringing in the ears. A common problem, tinnitus affects about 15 to 20 percent of people. Tinnitus isn’t a condition itself — it’s a symptom of an underlying condition, such as age-related hearing loss, ear injury or a circulatory system disorder.

      Epilepsy and tinnitus are both caused by overly excitable nerve cells. … But in some people, this braking system doesn’t work, and the nerves run amok, signaling so much that the brain gets overloaded and has a seizure (epilepsy) or hears phantom ringing (tinnitus).

      That’s just a guess on my part.

      True, the VNS battery has improved with this generation. Would you considered it?

      “From a physician’s perspective, the AspireSR generator is a very important development, because it is the only minimally invasive option we have that allows us to detect and respond to events in real-time,” added Micheál P. Macken, M.D., M.R.C.P.I., Assistant Professor of Neurology, Department of Neurology, Northwestern University Feinberg School of Medicine.

      “The AspireSR generator is a groundbreaking advancement in VNS Therapy and represents the essence of our DNA™ Technology – Detect, Notify, Act,” said Dan Moore, President and CEO of Cyberonics.

      “Our ability to design and implement algorithms that detect physiological conditions provides a foundation for this and future products and adds an important dimension to what ‘smart’ devices can accomplish to help improve the lives of patients globally.”

      My husband has Lidocaine Patches stuck to the back of his legs and rear end. They’re a big help, but don’t make the pain and tingling go away.

      Sounds like you’ve got a lot of crazy neurons firing fast. I wish I could offer an answer or make them go away. But unfortunately, I can’t. 😦

      Like

      Comment by Phylis Feiner Johnson — September 8, 2019 @ 9:42 AM

  11. Effie, Kathy, I know this sounds really trite, but have you considered relaxation exercises?

    Some Stress and Anxiety Solutions…

    https://epilepsytalk.wordpress.com/?p=11312&preview=true

    Liked by 1 person

    Comment by Phylis Feiner Johnson — September 8, 2019 @ 9:50 AM

  12. Goodmorning Phylis 😊. I can only speak for myself (I apologize Effie) but it’s funny because I actually do do that a lot. For me sometimes it’s just going for nice walks (if I can) or just working around my yard and house. Lol I like trite because then it’s quick and to the point!! Thank you that Phylis. I just find in Alberta it’s not as easy to get into a neurologist when we need to unless it comes to an emergency. That howcome I tried to stay busy biking, and on and on. I like that. Me and my little dog (she a chihuahua) were attack in our back yard beginning of June and it cost an arm and a leg for her to have her surgeries and I pretty much had to laydown and sleep all summer because I again broke my sternum because the chiropractor had to re-align my rib cage (and probably sustained another concussion). I now can I’m able to finally start moving around again 😊. So maybe that will help. However I also found IF NEED BE or (I’m beginning to think) that’s probable why my old doctor had me on the strongest form of ibuprofen possible, but we can’t get it in Canada anymore for quite awhile!! So as me and my dog (she has to learn how to walk again) heal I’m hoping to get back to normal asap. Lol I like working and being outside and constructive if I can. Thank you for everything I will ALWAYS GREATLY APPRECIATE YOU PHYLIS!!!!!!! Lol I guess I’m not as young as I used to be!! 😘🙏🏼🦅😇💗😘

    Liked by 1 person

    Comment by Kathy S.B — September 8, 2019 @ 10:24 AM

    • Oh poor pooch, poor Kathy. If it’s not one thing, it’s another!

      Wishing both of you a speedy recovery. Sending positive thoughts and love your way!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — September 8, 2019 @ 11:11 AM

  13. For me my sodium, sugar, blood pressure levels all dropped dangerously low. The doctor started me on sodium. Because my husband is a diabetic and heart issues and my crew IS HUGE I had to remove salt from our diet (thinking of them). However I’m getting it now as well 😊💗

    Liked by 1 person

    Comment by Kathy S.B — September 8, 2019 @ 10:28 AM

    • Kathy, this article may (or may not) be of help:

      Sodium and Seizures

      https://epilepsytalk.wordpress.com/?p=11299&preview=true

      Liked by 1 person

      Comment by Phylis Feiner Johnson — September 8, 2019 @ 11:13 AM

      • Sodium and Seizures

        You may think that sodium is a “bad guy” to be avoided or reduced at all cost, because too much is linked to high blood pressure.

        But sodium is actually an essential electrolyte, and a deficiency can trigger seizures.

        Seizures from low sodium levels are most likely to occur from a serious disease, acute infection or because you tried to run a marathon on a hot day.

        One-time or isolated seizures from these causes don’t warrant a diagnosis of epilepsy.

        However, epilepsy is sometimes misdiagnosed and you may have an underlying health condition that’s causing an electrolyte problem.

        Although most epileptic seizures don’t seem to be caused by low levels of sodium, some might be and others may be made worse by lack of the electrolyte.

        These electrolytes are essential for conducting electrical messages in your and throughout your body via nerves.

        They’re also important for the flow of water into and out of all cells.

        Low Sodium Levels

        A chronically low level of sodium, negatively affects your brain and can trigger seizures, because it disrupts electrical activity and causes swelling.

        It can be caused by severe lack of dietary salt, but it’s more often caused by profuse sweating, chronic diarrhea or excessive vomiting.

        Other possible causes of dehydration include fever, abnormal kidney function, diabetes, head trauma or surgery involving the pituitary gland.

        Also, imbalanced calcium and/or potassium levels, sickle cell disease, and use of drugs such as corticosteroids or diuretics.

        Kidney disease or negative reactions to medications such as diuretics can trigger sodium levels.

        And, Trileptal can reduce your blood-sodium levels over time!

        So, it’s possible that epilepsy can begin as a condition unrelated to low sodium levels, but later aggravated and triggered by medication.

        A sodium level in your blood that is too low is dangerous and can cause seizures and coma.

        That’s because a lack of sodium causes your body’s blood volume to decrease.

        This, in turn, will lead to a corresponding decrease in your blood pressure level.

        Low blood pressure can also cause your heart rate to increase, as well as light headedness and sometimes shock.

        Low blood sodium levels can also affect your brain, which is highly sensitive to changes in sodium levels.

        Losing sodium quickly is a medical emergency. It can cause stupor, unconsciousness, seizures, coma and even death.

        Unless the cause is obvious, a variety of tests are needed to determine if sodium was lost from your urine, diarrhea, or from vomiting.

        High Sodium Levels

        Very high sodium levels can lead to seizures and death.

        Contrary to popular belief, the primary cause of high blood sodium levels is not consumption of too much salt, but dehydration (not enough water intake).

        Lack of adequate water intake is a very common condition in the United States because most people don’t drink enough water each day, while also eating foods that are high in sodium.

        The most common symptoms of high blood sodium levels are confusion, irritability, depression, fatigue, fluid retention, lack of coordination, muscle cramps or twitching. Also nausea, restlessness, and general weakness.

        More serious symptoms of high sodium levels can include changes in blood pressure and heart rate, coma, seizures, and death.

        The severity of the symptoms is related to how quickly your high sodium levels developed.

        If your levels build up suddenly, your brain cells can’t adapt to their new high sodium environment.
        Balance

        Obviously, the key word here is balance. You don’t want your blood sodium levels to be too high or too low.

        As a further precaution, you should have your physician check your blood sodium level as part of your annual physical exam.

        Abnormal sodium levels are diagnosed by measuring the concentration of sodium in the blood.

        Tests are used to determine hormone problems.

        Your diet and use of diuretics must also be considered.

        And a low sodium level can be just one manifestation of a variety of disorders.

        While it can easily be corrected, the prognosis for the underlying condition that causes it varies.

        Intravenous saline in a variety of concentrations may be used to correct the sodium deficit in your body.

        The best bet is to go to your physician for a full blood panel.

        Only then can you identify the condition and act to rectify it.

        The simple step of monitoring your blood sodium level and adjusting your diet can make a big difference in your overall health — both immediately and in the long term.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — September 8, 2019 @ 11:43 AM

  14. Thank you Phylis 😘. I apologize I can’t get to the article I tried. I was mentioning to my husband during my summer and “Netflix” lol I had to watch movies for most of the summer because I couldn’t move!! I came across a movie called “Brain on fire”. WOW I SWEAR PEOPLE MUST WATCH IT!!!!! I tip my hat off to the lady who came forward and the doctor who figure it out, but I just WISH people actually watched it. After my husband watched it he just stared at me and I told him “that must be why the doctor had me on 600mgs of ibuprofen twice a day!! It helped bring the inflammation down”. He agreed. So if you have a chance please watch it!! Thank you. P.S. after thousands of dollars and 13 weeks of being in bed (my dog still has 7 more weeks of rest) I am starting to be able to try and get back to a regular pace again. Ya my poor little girl, but she’s a tough cookie!! 😘🐶🙏🏼💗

    Liked by 1 person

    Comment by Kathy S.B — September 8, 2019 @ 11:25 AM

    • Perhaps you could post an article about “Brain on fire” on the epilepsy websites on Facebook. This sounds like something that needs to be seen!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — September 8, 2019 @ 11:40 AM

  15. I actually made my doctor request all those tests!! And finally just called it out while my husband was there. That way he would be aware as well. She said they did all those tests and I told her to check my thyroids as well. That’s when she started me on the sodium tablets. As the week went on I slowly increased them by one at a time. I have to go for bloodwork every Friday now for 3 months. I was actually thinking along your train of thought as well. Therefore I made sure my best friend and husband were on the same page and knew INCASE I have to be brought back in!! I chalked it up to “menopause”, but I have almost came up to the one year time frame to be “medically considered” of having to have gone through it (in October). Also I have been trying to eat more as well. What concerned me was NOT BEING PROPERLY TOLD in 2010 about my MRI and my right hippocampus being slightly smaller than my left side and “mesial temporal sclerosis”. It’s written down as a probable retention cyst in the in the “inferior right maxillary antrum”. At one point (in the past) I had asked my “biological reproducer” how I got this? She said the doctors (at the time) were suspecting some form of “encephalitis”. I’ve just never been given an opportunity to tell either my doctors or whoever was or maybe my neurologist that. I’m thinking maybe I was getting an infection or measles and it never came out or fully developed. It is very disheartening NOT TO KNOW OR BE ALLOWED AN OPPORTUNITY to tell the doctors anything and to be constantly asked how much alcohol I consume when I don’t drink, but oh well. It’s a team effort!! 😊💗

    Liked by 1 person

    Comment by Kathy S.B — September 8, 2019 @ 12:28 PM

  16. Sounds about right!! I don’t understand how we can figure that out and DOCTORS CAN’T!! That’s not very good for this day and age. Thank you Phylis please have a very good day today 😘

    Liked by 1 person

    Comment by Kathy S.B — September 8, 2019 @ 1:13 PM

  17. It’s starting to sound more and more common!! Makes me wonder if it’s an insect, fly, bee or wasp or even possible plant or drink or something we eat!!!!!!! Maybe that’s why people used to have to get bloodwork prior to marriage in the past? Or if pregnant women should have some kind of bloodwork or medical check on the fetuses? Amniocentesis prior to birth. I had ALL OF MY VACATIONS and they ARE UP TO DATE as well. Maybe doctors also need to simply test for it as well. Apparently I was given up for adoption when I was born (in a different province), but when my grandma and great grandparents found out and my biological reproducer returned afterwards my grandma made the two of them go back to Vancouver and go to court and get me back. My grandma, great grandparents, great aunties/uncles and aunties/uncles ALL RAISED ME!!!!!

    Liked by 1 person

    Comment by Kathy S.B — September 8, 2019 @ 5:05 PM

  18. You were raised by a lot of love, God Bless You.

    As for the toxins, they are everywhere. Just like toxic people. 😦

    Liked by 1 person

    Comment by Phylis Feiner Johnson — September 8, 2019 @ 7:53 PM

  19. Thank you 🙏🏼❤️. Yes I was A VERY LUCKY LADY 😘. This makes life difficult or more like impossible to explain to anyone without sounding toxic. I sincerely apologize if I came across that way. Thank you for raising the topic because not very many people would dare do that. Almost makes (even me) not want to know anything 😘. But I have to be educated for my husband and children and our future. 😘. It’s pretty tough to be or feel selfish 💗

    Liked by 1 person

    Comment by Kathy S.B — September 8, 2019 @ 9:23 PM

  20. You’ve found your freedom in love.

    Like

    Comment by Phylis Feiner Johnson — September 9, 2019 @ 10:22 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 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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