Epilepsy Talk

Epilepsy – Advice and Insights  | February 10, 2022

Many of us were diagnosed with epilepsy at a wee age…

Others were completely taken by surprise in their teens or later years.

Whatever age you were when you were diagnosed with epilepsy, I’m sure you have advice and insights to share from your own experiences.

I’m certain you learned a lot (whether you wanted to or not) and I think we could all learn from your struggles for acceptance and survival.

Won’t you please share that wisdom to help us cope and grow?

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16 Comments »

  1. I think we ALL should be in a FFWD>>> train of thought, besides always looking BACK to the things that never worked when a drug was or IS being considered. with me surgery only changed my pattern as I still HAVE THE SEIZURES 21 years later For almost 3 months now I’ve been on EXCOPRI, where my pharmacist when he saw the NEW prescription says to me,, NEVER HEARD OF THIS BEFORE, and was a few days getting the drug. It is not to be for every seizure type, BUT I would think it would help any seizure condition where the brain is not making GABA which makes sense now to me why I CAN NOT EVER eat the MSG’s & NITRATES & NITRITES all that are in processed & SOME fermented foods for all of all my life. Now when I eat a few of them every NOW & THEN I do not get the seizures as what would ALWAYS be a 90+% chance of having a GRAND MAL from any MSG food or drinks over a period of time when my brain is saturated with GLUTAMATE & has no GABA or very little of it. NOW I believe all of that is changing, but the CBC test & drug level test may affirm that or say a few different things when that is done. IF NO SEIZURES happen for me through DECEMBER than I will know 100%. I just hope this company who is making this drug KEEPS THE CHEMICAL SOLUTION ALL TO THEMSELVES as we do not need worthless generics that are worse than brand names, as cheaper is never better in most to all cases.

    Liked by 1 person

    Comment by James D — February 10, 2022 @ 9:45 AM

    • I have Temporal Lobe Seizures – I guess my brain doesn’t produce much GABA, but when a new PCP wrote me a perscription for cloBAZam (a generic) it works so much better than a dozen I’ve tried before. I also take Vimpat (a generic) there Is one side-effect which is not as bad the meds I had 34 years ago. In 1998 got the implant VNS which is connected to the Vagus nerve. I read an article that the research they’ve done on the brain since 2000 has given Dr.’s more knowledge than 40 years ago. I collapsed in my senior year in high school in 1974.
      I found out about 26 years ago to avoid MSG so now I eat Thai food because I am Celiac and the noodles are made from rice not wheat/pasta.

      Liked by 1 person

      Comment by leonchavarria — February 10, 2022 @ 2:45 PM

  2. Epilepsy is a big problem. We need solutions so it’s best to investigate if and what the solution to our problem is. If I was going to complete my career, I had to find a way to control my seizures.

    After years of research, it was luck that led to my answer. I get a call from my mother-in-law about a program on the Discovery Health Channel showing the full process of brain surgery to control seizures. I watched the program, took notes, spoke to my epileptologist about it and convinced him surgery was the best solution to my problem.

    I had the surgery and I’m in my 22nd seizure-free year. I’m currently battling with heart and aorta problems but control of seizures makes it a lot easier to fix these problems, too.

    Liked by 1 person

    Comment by Ed Lugge — February 10, 2022 @ 9:52 AM

  3. “Sir, You just have a seizure & the Ambulance just brought you to the hospital” said the lady standing by my bed, whom I found out later to be the intensive care Nurse at the hospital.
    That’s how I was introduced to epilepsy.
    Shocked, subconscious, confused & disoriented, I said,,, “What? What in the hell is a seizure & how in the hell did I got to the hospital?”
    The unanswered question became 20 years struggle with epilepsy.
    Having had no experience of any kind of medical adversity for most of my life much less drastic than epileptic seizures, I simply refused to believe & accept the fate I got to live with for the rest of my life.
    All these time, I thought I was invincible.
    Little did I knew that I was as fragile as a glass.
    Then, epilepsy came around to shake the grounds I was standing on.
    And the more I resisted to accept the dramatic changes in my life, the more my seizures ended up being persistent & frequent, risking my career after 30 years of hard work.
    Therefore, I was made to make a choice to seek medical attention or lose my job.
    Under pressure from my employer to provide “medical verification forms” from my doctor, I had to go through various tests recording my brain waves, confirming or discounting my epileptic seizures.
    In the end, watching myself having two grand mal seizures in a week on a video recorded by the Neurologists diagnosing my epilepsy shocked me so bad, I realized the days of denial & cover up are over.
    Therefore, it was time to face the heat.
    And after 20 years with epilepsy, I learned very hard lessons in life I never thought possible.
    While coping with seizures & various prescription drugs or brain surgery could be difficult battles, the strong will to live makes the battles more worthy than giving up on life.
    Gerrie

    Liked by 1 person

    Comment by Gerrie — February 11, 2022 @ 6:54 AM

    • The struggle between acceptance and denial is a brutal one.

      Yet somehow over time — with pure guts — you managed to overcome it and deal with the cards that epilepsy dealt you.

      That bravery and grit is a lesson for us all.

      Like

      Comment by Phylis Feiner Johnson — February 11, 2022 @ 10:25 AM

  4. Reblogged this on Disablities & Mental Health Issues.

    Like

    Comment by Kenneth — February 11, 2022 @ 7:59 AM

  5. Please nobody will believe me that something is wrong with me. They think its a seizure but its not.

    Liked by 1 person

    Comment by Penny Gatica — February 11, 2022 @ 5:10 PM

    • Penny, what do you think it is?

      Like

      Comment by Phylis Feiner Johnson — February 11, 2022 @ 5:43 PM

    • Penny,,, Most of the ordinary people don’t know much about seizures, except watching the patient hit the ground & start shaking beyond control in case of grand mal seizures.
      But there are many kinds of seizures that are NOT easily visible to the naked eye for many people to find out what’s wrong with you.
      Therefore just like I’ve learned the hard way, see a neurologist & ask for MRI test to trace your brain waves that you think are causing your seizures.
      Once you validated your suspicions, you can follow up with your Neurologist’s recommendations to control your seizures.
      Gerrie

      Liked by 1 person

      Comment by Gerrie — February 11, 2022 @ 10:01 PM

  6. Learn your triggers we all have them but they are different for all. My triggers alcohol, lack of sleep, andstress. My signs one is going to come are I bite my lower lip I tell friends to watch for it. Dancing eyes, this is where my eyes bounce up and down or side was. I don’t feel them bounce but I can’t read anything and everything a blur. Another is I am overly tired. All these signs been stay home, don’t drive and rest. If you have a tonic seizure it takes about a week to get back to normal. Massages and chiropractor are your friends after one.

    Liked by 1 person

    Comment by Catherine McMillen — February 11, 2022 @ 8:32 PM

  7. I think it’s important to reassess priorities when you have epilepsy. I was in my early 20s when I was diagnosed, just starting my career and grown up life in the big city. This was a big blow, I didn’t know much about epilepsy, there was no such thing as the internet in the 80’s. If I was more educated and more accepting about how much control I did have over it by taking care of my health to minimize the triggers (getting enough sleep, not drinking like my peers and reducing stress), it wouldn’t have always been in the back of my mind like an albatross. The energy I put into just being worried and scared and embarrassed was not productive. Yes, I would never have total control but it’s important to keep it in perspective, it is one piece of you, not the whole you. I also wish I didn’t think doctors know it all and would have been a better advocate for myself when their advice didn’t make sense, in my case the way they minimized the side effects of medications. I’m grateful that I realize all of this now, even if it’s taken 30 years 🙂

    Liked by 1 person

    Comment by Margaret — February 12, 2022 @ 7:01 AM

    • Hi Margaret. Many of us suffered a limited amount of knowledge or were totally in the dark. In the 60s when I was diagnosed, it was hopeless. The choice was Dilantin or Pheno, both of which made me a zombie.

      I had no life, not to mention a social life. And although I wasn’t in denial, everyone around me was.

      Ah, just to have a morsel of knowledge — about triggers, auras, expectations. It was all an evil secret to me.

      Yes, I do agree, it’s important to keep our epilepsy in perspective. It does not define who we are. But, in those days, it seemed to dominate every bit of my life. And, like you, the energy I put into fear was counterproductive.

      But now we know better. To ask questions. Not to just roll over when the doctor prescribes something or gives a holy mandate.

      It may have taken a while, but the lessons did lead us to advocate for ourselves, which in the end, is the most important thing of all.

      Like

      Comment by Phylis Feiner Johnson — February 12, 2022 @ 11:06 AM

      • Well thank you Phyllis for doing your part with these informative reads. It’s so important to not let it bring you down and stay positive.

        Liked by 1 person

        Comment by Margaret Podolsky — February 12, 2022 @ 11:48 AM

      • Hi all😊
        Like Phylis, I was diagnosed at a young age, maybe around 5 yrs old or younger with Petit Mal seizures now referred to as Absence Seizures. My mother was a nurse and she noticed them first. My father cried. I also had migraines from that age on. I had around 2-300 a day. All the triggers everyone has mentioned are the usual suspects but let’s not forget artificial sweeteners including the so-called natural ones like Stevia and sulphites/sulphides often found in wines and foods are also triggers. Certain odors can be bad triggers. THC is not a good thing. We have to be careful with essential oils too. Again, you really have to get to know your body to understand YOUR triggers.
        I became seizure free after graduating HS and remained so for over 25 yrs but did not know they could come back and they did with a powerful vengeance.
        In contrast to some other voices here I do believe in looking back if only just to learn what our past has taught us. We can learn a lot even from things we did not like about our medical care, our interactions and relations so that we can help ourselves now live in a better manner than we did before. We are different from most people but I also like to think that everyone has something they are dealing with and coping with including Drs, they are human beings too. This world has been cruel to everyone the past few years. I’m about being better to myself and to others. SUDEP can happen at anytime and I think all I want is peace and to know I did what I could to achieve that in my own life.
        Be well everyone😘

        Liked by 1 person

        Comment by Janet R — February 13, 2022 @ 3:34 PM

  8. “I think we could all learn from your struggles for acceptance and survival.”

    “Won’t you please share that wisdom to help us cope and grow”

    Many great pcs of wisdom and it shows how this is most often a truly unique issue in each brain !
    Learning that was my first BIG light bulb moment!
    I had t.c. szs. for over 15 yrs. was diagnosed but went untreated or rather I ignored it! Saw them as more a distraction than some “crippling” event
    I did start learn though ,Then finding out I was different than many others with szs.in that I never feared them! not just ignoring them but truly this has never left me feeling they were to be scared of. Is a lot more to that ,because am still just ignoring the issue? or playing tuff guy? NO or maybe some other mental problem that makes me cold NO if nothing else I am overly sensitive to the issues
    That lack of being scared from having t.c. seizures once I found did not come from ignorance or avoidance grew into being grateful or finding a way I could learn from the event(s) not focusing on the worst, forced me to grow mentally !
    Just reusing the words ” acceptance and survival”
    says it all !
    The knowledge of how this effects others or “the witness” is one that gets over looked to often & how we as the people having them are now left to console witnesses or family ,spouses etc. often leaving the person having them even more isolated!
    Learning how far back these feelings go in my life has been a great thing for me! I assumed for 40 yrs everyone felt like this;) the deja vus, the auras ,spatial thinking, many other feelings I have are all linked, explains much of my childhood and twenties ,sadly I now have no one that knew me to share this with:(
    Staying mentally flexible is how I remain partially sane
    my saying “Peace Takes Practice” comes from that. Peace. Rick

    Liked by 1 person

    Comment by wichitarick — February 15, 2022 @ 9:20 PM


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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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