Epilepsy Talk

Tell us your story… | August 16, 2024

Every life has a story. Whether it be sad, bad, triumphant or fulfilling.

What better way to educate and empower those with epilepsy than by telling OUR own stories? (I’m sure they’re as different as we are!)

They can be in text, poetry, music or art. Whatever format you wish.

But the emphasis is on you…YOUR LIFE…YOUR EPILEPSY…HOW IT AFFECTED YOU.

You are the star of your own story. Let’s hear it and share your journey.

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Posted in Epilepsy
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17 Comments »

  1. Mark Geist's avatar

    I am a little cautious of my story. Cause my goal is to help others deal with seizures and help there care givers.Not boast about my success. I spent 25 years with complex par and petit Mal seizures. Then in 1985 my meds stopped working I was on Dilantin and tegratol and mysalene and depakeen 4 x a day. My Dr’s tried everthing nothing worked on the seizures. Then I was asked about getting tested to see if surgery was possible. I talked it over with family and we figured we don’t have anything to lose. I spent 2 weeks in the hospital being tested. I had a 24hr x 14day veeg they cut back on the meds and I also had a pet scan and wada test during my 2weeks stay. A month went by and I was told I was a candidate for left temp lobe brain surgery they said they are 92 % success rate on this procedure. Beings my seizures where on the left side of the brain and my speech memory and balance where on the right side of the brain. My surgery was scheduled for November 5th 1986. Before the surgery I saw my surgeon and we went over eveything. He said I will be Awake for my surgery I was told it was a local Anastasia. I would be alert but no pain I herd everthing the drill and saw I herd them say they removed a 3×5 cm piece of brain towards the end they asked me to move my hands and feet. 3 days after the procedure I went home to recover. The surgery was a success 3 months after my blood levels where toxic my dr started cutting back on meds and 3months later off all meds 6 months after surgery. This Nov 5th I will celebrate 38 years no seizures 37 1/2 years no meds. I am now 65 years old and retired.

    Liked by 1 person

    Comment by Mark Geist — August 16, 2024 @ 9:57 AM

    Reply
    • Phylis Feiner Johnson's avatar

      Wow! Bravo to you!

      Why should you be reticent to tell your story of success?

      It can be inspiring for all those who are considering surgery or those who’ve lost hope.

      Like

      Comment by Phylis Feiner Johnson — August 16, 2024 @ 10:05 AM

      Reply
      • believerpractically35b0c48b08's avatar

        I had people come up to me what are you thinking your cured why if had I chance not to be here for drs visits and group meetings I would take it. So I don’t bring my success up unless asked about getting tested. I feel my 25 years dealing with seizures can help more.

        Liked by 1 person

        Comment by believerpractically35b0c48b08 — August 16, 2024 @ 10:10 AM

      • Phylis Feiner Johnson's avatar

        That’s pathetic. You took the plunge and they’re either jealous or resentful. Clearly lacking your bravery.

        Like

        Comment by Phylis Feiner Johnson — August 16, 2024 @ 10:32 AM

      • Ed Lugge's avatar

        I had a successful surgery and nothing feels better than to hear it worked for other people, too.

        Liked by 1 person

        Comment by Ed Lugge — August 16, 2024 @ 10:22 AM

  2. Ed Lugge's avatar

    My battle with epilepsy started in 1961. I was getting scared for no reason and eventually our family doctor said it could be epilepsy but just a minor form. It may have started minor but the seizures got longer and stronger. I started seeing neurologists at St. Louis Children’s Hospital and they helped me out a lot.

    I would go all four years of high school seizure-free and thought maybe it’s over. But in my junior year, I visit my sister who gave birth a month ago and was finally going home in three days. I left her at 4:00 and two hours later my brother came and told me she died at 4:30 from a blood clot. I was mad at the world and things got worse 15 months later. My mom was ill for a long time and I sat at our dining room table with two brothers as they came to pick her up and take her to the hospital. This time I was ready for it when they told me she died. Now I just wanted to end it all. The only thing that saved me was a fear my mom had given me as to what would happen to me if I committed suicide. Needless to say, I got so upset that my seizures started again.

    The next two neurologists I saw were worthless. They didn’t help me. I felt like an object they just wanted to see still running and sent you home. Finally, I get the name of an epileptologist whom I describe as a serious friend who wants to help you if you listen to him. At one point, I saw my seizures under control for three years but my dad then died and they’re back again.

    Two years later after having control of seizures for more than six months, I was driving somewhere and just two blocks from home, I have another seizure. I heard my car went six feet in the air and came down head-first leaving the engine of my car just inches away from crushing my legs. When I came to, my back was at a 90-degree angle…in the wrong direction. I still get steroid shots to control the pain from that.

    While I’m sitting at home watching TV, my mother-in-law calls me and tells me to turn it to Discovery Health Channel. There I see a woman explaining her life with epilepsy and how she’s ready for anything to help control it. I watched the tests they did. I watched the surgery. My wife knew exactly what I was thinking before I told her, “I’m next.” I had a five-day VEEG. Nothing happened and I was afraid I’d have to come back later and try again. Then that night I had two of the worst seizures I ever had. I had a third one in my sleep. I got word before I left that this was enough to say I’m a candidate. The seizures are all coming from the left temporal lobe. I later had a WADA test to determine the left side was where my math and short-term memory was located.

    Two months later, I’m being escorted by the nurses to the operating room. I’m smiling, cracking jokes. They asked if I knew what I was doing there. I knew but I had every bit of confidence everything was going to be OK. After two 1-hour pushbacks of the operating time, I remember the only time I was nervous. They said, “Mr. Lugge, we’re putting you under.” and I was out like a light. I remember being awake during the surgery and listening to what they were doing to me. They removed a 3-inch cube of my temporal lobe.

    When I came to, the first person I saw was my mother-in-law. I remembered telling myself if she’s the one I see, I did just fine. If it was my mother I saw, I wasn’t as fortunate. Feeling at ease, I went back to sleep. The next time I wake up, there’s my epileptologist and he starts asking questions. The only two I remember were “Who’s the president? and “What’s the square root of 7,450?”. Believe it or not, the first question was harder but I was madder about the second question. I told him if they needed to remove my math ability to make sure I had better or total control of my seizures, remove it! To answer his question, I told him it was approximately 86.3 and he gave me the OK sign. All I could think to myself was “You got what you wanted. I’d better see what I wanted to see.”

    Everything went well after that. They wanted to send me home on the third day but my wife and brother told them and told me to wait another day. The headaches were gone in less than a week. I’m not having seizures just feel chills down the left side. Then comes the deciding day of whether I was talking to my doctor anymore. They ran an eeg and he told me there was no activity. He said everything looked good and it looked like I was on my way to total control of seizures. 23 1/2 years later we both have our wishes. I’m still seizure-free and I can still figure out his square root problems.

    Liked by 1 person

    Comment by Ed Lugge — August 16, 2024 @ 12:02 PM

    Reply
    • Phylis Feiner Johnson's avatar

      Geeze. I couldn’t figure out a square root if someone had a gun to my head. Clearly you are brilliant.

      But to have that acuity blocked by so much tragedy and stress. The emotional pain, no less the seizures, must have been horrible. I think it would be crippling for me.

      Bless your mother-in-law and wife for their strength and reassurance. And for standing by you in times of indecision. They are the angels you would not have met if you committed suicide.

      Congratulations on your strength and fortitude.

      Like

      Comment by Phylis Feiner Johnson — August 16, 2024 @ 12:51 PM

      Reply
  3. Tina's avatar

    I started to get partial seizures when I was pregnant with my third baby. I started feeling weird and I would get double vision looking to the upper left. After a while, this made me take a pregnancy test because I had no other explanations. I didn’t even know partial seizures were a thing. I have no family history of seizures or any brain injuries from childhood. I told my obgyn about these horrible feelings I was having and she brushed me off saying pregnancy has weird stuff and after the baby is delivered, everything returns to normal. 6 weeks after I had my baby, I woke up on the floor with a injury on my nose from hitting my bed stand and muscles pains in my throat area and quads. My baby was crying and my 6 year old at the time was holding him. I was completely confused and didn’t understand what had happened. I went to the ER and had a CT scan which showed nothing abnormal. I was brushed off. One night while sleeping, I had a grand mal seizure and my husband recorded it. That’s when the Doctors sent me to a neurologist after confirming that it looked like a seizure. After doing my own research, that’s when I realized I was having partial seizures during my pregnancy. I continued to have them and occasionally had the grand mals ones only while I was sleeping. It seems they started partial and generalized during that time. I was told they would stop after I stopped breastfeeding. After I stopped, the seizures didn’t. I also still have double vision looking upper left but ophthalmologists and neuro-ophtomologists said my optical nerve is fine and nothing is touching it. I’ve been to about 6 neurologists and I’ve had EEGs that showed my seizures starting in my right temporal lobe. 1 neurologist got my grand mal seizures under control with lamotrigine. The partial ones never stopped. I’ve tried about 8 medications that didn’t work. It has been almost 12 years since I was pregnant and started having them. I’ve had all the tests, MRIs, scans…everything always looks fine. I feel like the neurologists gave up on me and my current one is probably the worst since at every routine checkup, he forgets things that are in my chart. My last resort is surgery. All the EEGs I’ve had, pointed to them starting in my right temporal lobe, but other neurologists aren’t so sure. They said I need tests first which are similar to EEGs, but they put you under anesthesia and put in electrodes into your brain. That’s already scary. I’ve been on a search all this time to find someone going through something similar, but no luck. My partial seizures start with a very strong deja vu feeling, so I’m able to get somewhere safe quickly to let it pass. It usually takes a couple minutes, but the worst thing is recovery. Sometimes, it’s ok, but most of the time I get deja vu for the next few days. The deja vu is strong and exhausting and almost feels like my memories are scanning all at once. My partial seizures are usually triggered by things like music, especially from when I was younger, smells, phrases, just talking…things that trigger my memory. I’ve brought up hormones to doctors, because this started during pregnancy, but they’ve also brushed that off. I’ve noticed more likelihood of partial seizures depending on where I am in my cycle, but again, brushed off by doctors. I’m hoping to go to another country to get more opinions before having surgeons take out a piece of my brain. Maybe someone will be more open-minded as to why this happened in the first place. I haven’t met anyone with my circumstances and I haven’t found any studies of this, either. The surgery gives me a 25% chance to be seizure-free, but 75% chance that medications will work. I would still have to be on medications, with side effects, for the rest of my life. This started when I was 25 and I’m now 36. I’m hoping someone out there knows of something similar or has more input as to why this would happen…

    Liked by 1 person

    Comment by Tina — August 16, 2024 @ 12:39 PM

    Reply
  4. Phylis Feiner Johnson's avatar

    My primary guess is Catamenial Epilepsy.

    Catamenial epilepsy — do you have it? https://epilepsytalk.com/2023/03/20/catamenial-epilepsy-do-you-have-it/

    My next guess is hormones. Is there a connection between seizures and hormones?  https://epilepsytalk.com/2024/01/28/is-there-a-connection-between-seizures-and-hormones/

    It could be Psychogenic Non-Epileptic Seizures – (PNES) or Physiologic Non-Epileptic Seizures (NES).
    Epilepsy Versus “Pseudo-Seizures”  https://epilepsytalk.com/2018/12/09/epilepsy-versus-pseudo-seizures/

    Or it could be a combination of Actual seizures and Psychological ones.
    “Pseudo Seizures” AND Epilepsy – Yes, You CAN Have BOTH!  https://epilepsytalk.com/2018/10/02/pseudo-seizures-and-epilepsy-yes-you-can-have-both/

    I know this is a lot to take in and I’m not a doctor. But, I hope it can help in some way.

    Like

    Comment by Phylis Feiner Johnson — August 16, 2024 @ 1:11 PM

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  5. Paget Bridges's avatar

    I have never shared my younger brother’s history of seizures, but after reading others’ stories feel compelled to do so.

    Liked by 1 person

    Comment by Paget Bridges — August 17, 2024 @ 7:31 PM

    Reply
    • Phylis Feiner Johnson's avatar

      I was “in the closet” (as much as I could be with all those seizures) until I was 29. Finally, I met someone else with epilepsy!

      Like

      Comment by Phylis Feiner Johnson — August 17, 2024 @ 7:58 PM

      Reply
  6. Paget Bridges's avatar
    • . . . continuing, his first seizure happened when he was 42, in hindsight most likely from being hit in the head with a large rock when he was five or six. It occurred when he was driving on a country road and ran into a telephone pole.
    • The emergency room he was taken to was not able to diagnose the cause of the accident, and it was not until a year later while on a construction job site that he had a grand mal that was witnessed by several people.
    • That trip to a Chicago hospital was the beginning of being given AEDs, singly, then in various cocktails over a twenty-two year period during which he was treated by three different neurologists.
    • The seizures continued.
    • It was not until he moved to the same city where I live that he went to an epileptologist who arranged for him to be screened for possible surgery.
    • An eight-day stay in an Epilepsy Monitoring Unit that involved drug withdrawal and sleep deprivation while being EEG-monitored let to being referred for a Selective Amygdalohippocampectomy that was performed two and a half years ago.
    • He was seizure-free for that period, but had a “breakthrough” seizure six weeks ago. Thankfully, he lives next door to me and I found him on the floor, and was able to get him to an emergency room pronto.
    • Now the strange part: he presented with Troponin levels off the charts (12,000 when it should be under 100), as well as severe Rhabdomyolysis. Doctors presumed with those two symptoms that he’d had a heart attack, but that was disproven. The only other cause it could be for those kidney enzymes to be flooding his bloodstream had to be the AED medications he is still taking . . . BUT THAT THEY INSISTED HE CONTINUE TO TAKE.
    • Now an even stranger part: I have reported four similar incidents, these without seizures, to his epileptologist; symptoms of his legs losing all strength to the point that he cannot stand for up to two hours, as well as double vision. Again, these occurred without seizures. His doctor assured me that these were just “another type of seizure”, but now, lay person that I am, know that these episodes are more likely caused from damage to his kidneys, as well as his liver, from being on AED meds for all these years.
    • Mind you, he is 65, in otherwise perfect health, does not use or abuse drugs or alcohol, joins me at the gym four days a week where he does heavy leg presses — and so we have had to educate ourselves on Rhabdomyolysis, where ALL strength vanishes from one’s body when the kidney enzymes/proteins flood the bloodstream.
    • Apologies for being so verbose here, but my goal is to help others. He is now drinking copious amounts of water and using Liquid IV powders, in addition to doing regular kidney and liver cleanse protocols.
    • And we pray . . . a lot.

    Liked by 1 person

    Comment by Paget Bridges — August 17, 2024 @ 8:00 PM

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    • Phylis Feiner Johnson's avatar

      And how is his Rhabdomyolysis now. Without the help of the epileptologist. I presume he’s seen a nephrologist?

      Your brother has been through so much and is working so hard, it certainly doesn’t seem fair. And it isn’t.

      But doctors are limited. (So am I!) AEDs are limited. And the only thing not limited is his perseverance and your love.

      I hope that’s enough to get you through.

      Like

      Comment by Phylis Feiner Johnson — August 17, 2024 @ 8:11 PM

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  7. Paget Bridges's avatar

    Thank you for asking, Phylis, and I should have followed up with that information. He has had two subsequent lab work-ups and his levels are now normal. A wonderful reassurance that we are doing the right things.

    Like

    Comment by Paget Bridges — August 17, 2024 @ 8:16 PM

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    • Phylis Feiner Johnson's avatar

      From your mouth to God’s ear.

      Like

      Comment by Phylis Feiner Johnson — August 17, 2024 @ 8:23 PM

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      • Paget Bridges's avatar

        . . . and, no, he has not seen a nephrologist. He is so “done” with doctors that I can’t broach the subject. We’re spending even more time at the gym to work out our frustrations with allopathic medicine. I’ve taught tai chi for 18 years and he is actually/finally interested in TCM and other “wackadoodle” ideas of mine!

        Liked by 1 person

        Comment by Paget Bridges — August 17, 2024 @ 8:30 PM

  8. Phylis Feiner Johnson's avatar

    Boy, if he didn’t have you and your undying perseverance and love – along with a tremendous sense of discipline – he’d be a goner. 😦

    Like

    Comment by Phylis Feiner Johnson — August 17, 2024 @ 8:57 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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