What does everyone make of this: first seizure in 18 years?

Posted by bradeby @bradeby, 6 days ago

So I’ve been seizure free for 18 years and medication free for 15 years. Then on Monday night after I went to bed shortly after going to sleep I had my first seizure in 18 or so years. Now the the first two I had were on first thing in the morning after I awoke. I did hit my head maybe a few days prior. Not enough to knock me out but knock me back and gave me a goose egg on the very top of my skull. Then a second one at the hospital that night while I sleep. Put me on Dilantin and had that medicine changed to tegratol and was on that for about 3 years. Never had any other issues until this past Monday night when I had another seizure out of nowhere just after I fell asleep. Then my wife said after that one I got up and went to use the restroom and had another. Now nothing was a miss during the day no blows to my head no drug use or alcohol use. Nothing that would point me to an as to why. Now after the first set of seizures 18 years ago I went through all the tests they do MRI, EEG, sleep study etc. which all lead to normal type things. And I do have an EEG AND MRI scheduled already again to make sure there is nothing out of the ordinary underlying with me. I guess what I’m asking for now is thoughts as to why in the heck did this happen to me again so far removed from the first ones 18 years ago. As far as how I feel today, I feel as normal as I can be. Tired and happy to get some rest and of course my tongue is pretty black and blue from apparently bitting down on it. I did not pee myself this time because I believe I emptied my bladder just before. One part of me says I hope they find something but then I think I’d rather them find nothing again and have all my tests come back clean! Has anyone had anything similar as to having a lengthy time between episodes or any words of encouragement for me would be awesome!

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

hopefullibrarian | @hopefullibrarian | 2 days ago

Widely spaced seizures happen with more of us than I would have thought. I have tonic clonic seizures that are far apart. My first was when I was 13 and going through puberty. I didn't go on medication, and didn't have another until I was 44, under a lot of stress, and in perimenopause. All tests came back normal. I took Keppra for one week, then refused to stay on it because I couldn't think clearly. The next one was when I was 50 years old and entering menopause. I was under a tremendous amount of stress. This one happened in bed. I had been asleep, but was startled awake shortly before it started. Again all the tests came back normal. I have been on AEDs ever since. First Keppra, then Lamotrigine which I am still on 4 years later. While on the medication, I've nearly had a seizure twice. One, at 51 years old when I had an aura then lost consciousness during the day, Then the next one when I was 53. It happened at night when I had an intense aura and felt sure I was going to have a seizure, but didn't. Both of those times I was stressed again. I've had two years seizure free since that intense aura. I started hormone replacement therapy (HRT) a year ago and am staying on Lamotrigine. Even though I still get stressed, I haven't had any more seizures. My epileptologist told me that each time I have one it's training my brain to react to stress that way making it more likely to have another. I personally think much of my issue is hormone related, even the stress itself. Hormone replacement, can however lower Lamotrigine levels, so I had mine tested, and am told that it's fine. I wouldn't have HRT without supervision by my epileptologist.