Epilepsy Talk

Epilepsy – Advice and Insights | September 1, 2020

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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33 Comments »

  1. After taking Depakote ER for 20 Yrs and getting a kidney stone and fatty liver. I switched to VIMPAT. It is expensive but there are NO side effects. It is ina Pier 4. It works!

    Liked by 2 people

    Comment by Rita McDonald — September 1, 2020 @ 4:11 PM

    • I took Depakote for 20 years too and stayed seizure free. Suddenly it caused severe swelling in my legs and feet. 5 years and 10 medications later the docs still have not found the right combo to keep me seizure free. My life was not affected by my epilepsy because the medication worked so well. Now everything has changed. How do you cope with not driving or feeling independent? I find myself being depressed a lot and I’m not usually like that.

      Liked by 1 person

      Comment by Michelle — September 19, 2020 @ 9:45 PM

      • Michelle, I don’t think that anyone has an easy answer to losing independence and feeling depressed.

        That’s why so many people call those with epilepsy “warriors”.

        Because each day is a battle — with your body, your emotions and the world around you. And only you can draft your own peace plan.

        I would start by trying to surround yourself with positive people. Friends and loved ones who are supportive.

        I would also suggest realizing that epilepsy is a condition, it is not a disease. You do not have the plague. But you HAVE lost several privileges that others have.

        Be pro-active. Make a plan. Figure out how you can easily get those groceries. (Instacart?) The pharmacy. Free delivery?)

        Ask others to include you in their plans. So you can get out. Get involved.

        Join a support group. I started one and it’s great. People come together with problems, solutions, ideas and help each other cope. Everyone may be different, but they share a common bond.

        And yes, epilepsy can be a bond.

        Like

        Comment by Phylis Feiner Johnson — September 19, 2020 @ 10:08 PM

  2. Let me be the one to add REALITY to the TAGS list, and there should be no ”rejection” to know that MSG’s, ASPARTAME’s NITRATES & NITRITES & METALS (( but ZINC & SELENIUM ARE GOOD),,,, that weaken all brain immunity can and do cause seizures. I say CAUSE seizures, because if those synthetic toxins, metals & chemicals were never in out foods, drinks & drugs, from almost all neurological drugs to OTC drugs, they are always on the attack on brain chemistry in all part of the brain. It was never so evident of this when I was at the NIH in JUNE of 2000 in front of a VEEG monitor for 9 days with NO GRAND MAL happening yet. I asked & had my parents bring me in some home foods, COOKED CABBAGE & HAM that last day I ever ate it and after 20 minutes from eating that a GRAND MAL seizure happened. and till this day NOTHING HAS EVER BEEN RESEARCHED or STUDIES EVER GET DONE as to why SYNTHETIC TOXINS & CHEMICALS MADE BY MAN KILLS BRAIN CHEMISTRY & HEALTHY BRAIN CELLS & NEURONS that can never be replaced in a persons life when GRAND MALS happen to anyone. This is A REALITY and it will happen to anyone when they least expect it, even of you do NOT HAVE EPILEPSY. So WHY are there over 65 MILLION today diagnosed with EPILEPSY ? WHY was there only 10 MILLION with epilepsy in 1970 ? NOT from a larger population number today, but MORE toxic foods & drinks in 2020 than in 1970, & MORE DRUGS needs to be sold in 2020, than in 1970, and MORE GADGETS to be installed today to stop seizures, than were ever thought about in 1970, as near 1973 the VNS first became an option, and it wasn’t a 100% seizure free choice then, as is the same I have been told basically the same thing today 47 years later. Another REALITY which I hope all are with me WILL BE that the RAPTURE is coming sooner than later, & I hope that happens before my next GRAND MAL if I am to have another one sooner or later, as I ALWAYS LOOK UP FOR THE ANSWER to end my seizures, and that again is the only REALITY that will end seizures forever if you believe in Jesus Christ. MARK 9:29 & MARK 11:24. <<< All what I mention ARE THE MOST IMPORTANT from me that everyone should know, I could say more on drugs, environment, STRESS & other issues, but none of them I do not believe can come close to relate things to us all as the ones I did mention. God will NEVER let us alone or forsake us HEBREWS 13:5 or 5:13

    Liked by 2 people

    Comment by James D — September 1, 2020 @ 7:47 PM

  3. We need to come up with our own ideas of how to handle parts of our life with epilepsy. One for me was a way to delay or eliminate blacking out from a seizure. I had the idea my brain couldn’t stop working if I’m using it. If I felt a strong aura, I started to sing. I was telling it, “I’m singing, brain. I’m using you. Don’t get any ideas of cutting me off.” and most of the time I stayed aware of everything going on through the whole seizure.

    Call it what you want but I could see how it helped me.

    Liked by 1 person

    Comment by Ed Lugge — September 1, 2020 @ 9:19 PM

    • Ed, sorry, for the thumbs down. I was trying to give you an extra thumbs up and goofed.

      Like

      Comment by Phylis Feiner Johnson — September 2, 2020 @ 10:13 AM

      • I’m a man! I can take it! 😃

        Liked by 1 person

        Comment by Ed Lugge — September 2, 2020 @ 1:37 PM

      • Phylis,
        The thumbs are posted too close to each other, everytime I tried to mark thumps up, many times I end up marking thumbs down inadvertently.
        And everytime I tried to correct the error, I still end up incorrectly marking thumbs down.
        Therefore, updating the forum software & positioning the thumbs far apart at the end of the paragraphs could simplify marking down the right thumb.
        Hopefully, it’s not going to be too much work to update the forum software & adjust the format of the paragraphs to break the thumbs apart.
        Gerrie

        Liked by 1 person

        Comment by Gerrie — September 2, 2020 @ 2:12 PM

      • The same thing happens to me, as you can see.

        Unfortunately, the software is not in my hands. It’s hosted by a third party which is responsible for the format. So, although I agree with you Gerrie, there’s little I can do. 😦

        Like

        Comment by Phylis Feiner Johnson — September 2, 2020 @ 2:22 PM

      • Thanks for sharing, Ed! I follow the same pattern to stop my anxious auras. Other methods i utilize to correct the symptoms are: 8hrs of daily sleep, diet/fitness and the biggy …eliminate stress (we can all do this).

        Liked by 1 person

        Comment by Dan Vincent — September 4, 2020 @ 1:03 PM

  4. A little tidbit about stress: Stress can increase cortisol, known as “the stress hormone” because cortisol is secreted in higher levels during the body’s “fight or flight” response to stress. And, as you may imagine, it’s responsible for several stress-related changes in the body which also may influence seizure activity.

    Negative emotions related to stress, such as anger, worry or fright, may also cause seizures. This happens because the limbic system, the portion of the brain that regulates emotion, is one of the most common places for seizures to begin. You’ll probably find that you have more seizures during or after periods of anxiety or stress.

    Like

    Comment by Phylis Feiner Johnson — September 4, 2020 @ 1:36 PM

  5. After many years of not knowing the triggers to my seizures, I’ve come to ask myself why am I having seizures particularly in certain hours of the day as if I had scheduled & set them out to be like clockwork?
    Gradually, I discovered & noticed that since I like to stay out late in the evening or at night, the bright flickering lights of commercial buildings & high beams of the passing cars making me feel some sharp blast on my eyes like a lightening seem to start my auras to end up having seizures.
    Therefore, I ended up wearing dark glasses at night to avoid the sharp flickering lights of commercial buildings & high beams of passing cars, which helped me to feel much more safe in blocking the triggers to my seizures & drastically minimized the frequency of my seizures.
    Therefore we all may need to check out our environment, search, deeply understand & avoid the potential triggers to our seizures.
    Gerrie

    Liked by 2 people

    Comment by Gerrie — September 4, 2020 @ 6:55 PM

    • Yes those headlights hurt! I feel like a sledgehammer is hitting my pupils! I sometimes wear sunglasses at night 😉 to minimize it (I don’t drive).

      Btw Gerrie do you have a blog or website? You seem to have great info as well.

      Liked by 1 person

      Comment by Hetty Eliot — September 7, 2020 @ 5:46 PM

      • For those who are photosensitive, there’s a website I just discovered called Zenni. https://www.zennioptical.com/blokz-blue-light-glasses

        They have these special lenses that they’ve patented which are called BLOKZ. They are extraordinary.

        Rather than polarized lenses which go from light to dark, depending upon whether it’s bright or dark, they’re virtually clear, strong, blue-light-blocking lenses for all-day protection, whether you’re indoors or out.

        I got them for a friend of mine and he reports they really do work. Take a look at the website. (They’re not expensive either. Frames start at $6.95!)

        Liked by 1 person

        Comment by Phylis Feiner Johnson — September 7, 2020 @ 6:00 PM

      • I’ll definitely ask my eye doctor about this next time. I’m overdue now anyway! I have a wicked strong prescription.

        Liked by 1 person

        Comment by Hetty Eliot — September 7, 2020 @ 6:30 PM

      • Hetty, Thanks for your compliment but I’ m too disorganized & dysfunctional operator to set up a blog/website & constantly update the blog/website with the latest information & sources of more informative sites.
        Therefore, I don’t have a blog or website.
        But I agree with you that those blinding bright lights of commercial buildings & high beams of the cars on the streets passing by feels like a sharp blast of needles penetrating my eyes like a lightening targeting my vision, which immediately triggers my auras & end up provoking my seizures.
        Like I said before, even though I don’t drive or drink alcohol, I like to stay out late into the night enjoying the bustling human flood to city nights & cooler weather.
        That’s when I found out the hard way that the bright lights are triggering my auras, leading into my seizures to spend the night at the hospital.
        Therefore, I learned to wear dark glasses at night to avoid the bright blasting lights triggering my seizures.
        Interestingly, the protective technique seem to be more effective than my seizure medications for now.
        And I hope it works for you.
        Best wishes!
        Gerrie

        Liked by 2 people

        Comment by Gerrie — September 8, 2020 @ 9:15 AM

      • What about the BLOKZ lenses mentioned above?

        Like

        Comment by Phylis Feiner Johnson — September 8, 2020 @ 9:47 AM

      • Phylis,
        Sorry for my mistake marking the article thumbs down.
        As for BLOKZ glasses, I think they are important tools to shield my eyes from striking bright lights triggering my seizures.
        Therefore, I intend to order few of the glasses & store them in my drawers, just in case I broke or lost the one in my possession.
        Ironically, BLOKZ glasses are more affordable than my prescription & reading glasses. 👍!

        Gerrie

        Liked by 1 person

        Comment by Gerrie — September 8, 2020 @ 3:51 PM

      • Good idea. At their reasonable price, you’ve got nothing to lose. Jody swears the BLOKZ help. Not only does he have seizures because of photosensitivity, he also gets vertigo.

        Like

        Comment by Phylis Feiner Johnson — September 8, 2020 @ 5:10 PM

      • Thanks so much. It’s all good info.

        Liked by 1 person

        Comment by Hetty Eliot — September 8, 2020 @ 7:19 PM

  6. There are lots of anti-seizure drugs, and you shouldn’t just accept the first one you are put on if it isn’t suiting you. I probably made my situation worse by trying to tolerate a drug that I was told ‘most people are fine on’, which made my seizures worse and gave me horrible side effects. I am fairly convinced that I haven’t gone back to my first state with epilepsy, pre-this drug, even after months of coming off it, and some of the side effects took months to go away or lessen.

    Liked by 1 person

    Comment by Phyllis Green — September 4, 2020 @ 9:13 PM

    • So what is your present state and what med are you taking, Phyllis?

      Like

      Comment by Phylis Feiner Johnson — September 4, 2020 @ 9:57 PM

      • It has been said, prevention is better than cure.
        Therefore, avoiding the triggers to my seizures seem to be far more effective defense method than totally depending on the medications that failed to cure my seizures.
        In any case, starting with Lamictal failing to control my seizures, I was prescribed & switched to various dosages of Dilantin to only add Keppra on top of Dilantin in the pursuit to control my seizures.
        Risking major side effects taking the combined cocktail, the mix has yet to prove effective in controlling my seizures.
        Therefore, I learned that finding the right medication to control my seizures is NOT going to be as easy as I thought & presumed to be.
        Finally, I may be good candidate laying down in operating room for brain surgery to control my seizures.
        Gerrie

        Liked by 1 person

        Comment by Gerrie — September 8, 2020 @ 7:37 AM

      • Gerrie, have you considered a VNS?

        Vagus Nerve Stimulation…Is it for YOU? https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%e2%80%a6is-it-for-you/

        Like

        Comment by Phylis Feiner Johnson — September 8, 2020 @ 9:44 AM

      • Phylis,
        I don’t know much about VNS.
        Therefore, I need to do a whole lot of research & know a whole lot more about the the procedures & benefits of VNS, before considering & deciding if VNS is better alternative to cure my seizures.
        Again, it’s all about trying all the possibilities for better results.
        Gerrie

        Liked by 1 person

        Comment by Gerrie — September 8, 2020 @ 4:16 PM

      • While you’re at it Gerrie, you might want to check this out:

        Move Over VNS…There’s A New Guy in Town! https://epilepsytalk.com/2018/01/28/move-over-vnstheres-a-new-guy-in-town/

        TNS vs. VNS – NO SURGERY! https://epilepsytalk.com/2020/06/18/tns-vs-vns-no-surgery/

        Like

        Comment by Phylis Feiner Johnson — September 8, 2020 @ 5:22 PM

      • Phylis,
        Thank you for digging up all the alternatives & methods available to control my seizures, you opened up my eyes & made my search for remedy more simplified & possible.
        I’m grateful for your assistance & I intend to research the alternatives I didn’t know I’ve, beyond medications or brain surgery.
        In fact, having some vague idea from reading few magazines about brain surgery being connected to Epilepsy, the very first question I asked to the Neurologist I saw for the first time in my life was “DO YOU KNOW HOW TO DO BRAIN SURGERY”?
        The Neurologist who does NOT have any medical record/history of my seizures beyond handful ER hospital papers on his desk seems to be so shocked, his eyes look like they want to explode out their sockets.
        Having no immediate answer to my unexpected question, the Neurologist asks me back “ARE YOU SURE YOU WANT TO GO THROUGH BRAIN SURGERY”?
        Little did I knew there’s a lot more to epilepsy than just brain surgery.
        Finally, the Neurologist calming down to control his composure, explained to me that I need MRI & EEG tests to locate where my seizure are coming from & made appointment for me to stay in Stanford University Hospital for a week to video record my seizures in the University bed while carrying out the MRI & EEG tests I never had before.
        Stanford University showed me the video & I was shocked to see myself having two grand mal seizures while I was sleeping.
        Having completed the MRI & EEG tests, the University forwarded the test results to my Neurologist who recommended I should s
        stay on medication.
        Remembering the innocence of my old days, sometimes I chuckle laughing at how gullible I was to understand the long journey to cure/control my seizures.
        Gerrie

        Liked by 1 person

        Comment by Gerrie — September 8, 2020 @ 7:21 PM

      • I can just see the neurologist’s eyes bugging out of his head. Well said. LOL.

        Yes, there’s a lot to any brain surgery/procedure than just the act itself. It takes a lot of testing to get it down right. Which is a GOOD thing.

        You wouldn’t want anyone poking into your brain blind, (no pun intended), nor would you want an invasive procedure if it could be avoided.

        That’s why I threw out the idea of the TNS. I’m not saying it’s for you. Just that it’s an option.

        Liked by 1 person

        Comment by Phylis Feiner Johnson — September 8, 2020 @ 8:14 PM

  7. Try to get copies of any imaging and all your neurological records. Keep them in a safe place.

    Keep a record of all seizures – duration, circumstances, time of day, whatever you can remember or witnesses can remember.

    Keep track of how medications affect you, whether for seizures or some other issue, especially if you’re taking multiple medications.

    Enquire of your body what it is experiencing. Enquire of your mind what it’s thinking. Enquire of your heart what you feel. Try not to confuse these. Tightness in the midsection can be indigestion or fear or . . . ? What is it for you? Because once we have labeled it, we react more to the label than to the sensation.

    Liked by 1 person

    Comment by HoDo — September 11, 2020 @ 7:59 PM

    • HoDo,
      Thank you for your brilliant advice.
      Yes you are right. I agree with you I need to keep tracking & recording all the events & feelings associated with my seizures to find better treatment.
      Gerrie

      Liked by 1 person

      Comment by Gerrie — September 12, 2020 @ 5:24 PM

      • Keeping track – and I was very late in doing so, nor did any doctor suggest I do this – didn’t get me better treatment. Yet. It did give me a handle on the windows when seizures were most likely to occur. This mustering of facts, in turn, made doctors pay more attention. That alone – being SEEN – was worth the labor of writing down details.

        With every good wish for superior self care. You’re worth it!

        Liked by 1 person

        Comment by HoDo — September 12, 2020 @ 5:42 PM

      • For what it’s worth: Seizure Tracker is excellent. Many apps, especially new ones for your phone.

        There’s an extensive diary, detailed reports, you can time and video record seizures, etc.

        If you’re looking for an online app, this may be for you. https://seizuretracker.com/

        Like

        Comment by Phylis Feiner Johnson — September 12, 2020 @ 6:46 PM

      • Thanks, I’ll keep it in mind. My phone is a kludgey flip phone, no apps, but the tablet can handle them. Besides, when I’m recording info, I tend to get long-winded; and hand writing is validating somehow.

        Liked by 1 person

        Comment by HoDo — September 12, 2020 @ 6:51 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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