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[Nozzala]

I'm grateful to have found this forum - I'm at the point where I need to talk this out. I am fortunate in that I have had very few seizures, all Tonic Clonic, only 9 in my life, starting at age 20. Now I'm 40, and just had #s 8 and 9. However, this was the first time that I've had two in one day - last Tuesday.

They had been very well controlled via my meds - I was on Dilantin for years and years with some side effects, but manageable. Then I switched over to Lamictal about 5 years ago. I was on 400mg a day extended release, and was tolerating it very well. My neurologist and I had even talked about being into the realm of maybe discussing dropping the meds altogether. I told him that I wasn't comfortable doing that, and I had just made my peace with being a pill popper my whole life.

After these last 2 tonic clonic seizures, my neurologist upped me to 600mg and wanted to see how I would tolerate it. He said that I would probably feel lousy, and I'm starting to feel pretty bad. I'll get some blood levels next week and then we can work on fine tuning it. Blarg.

So now I'm going to have to make my peace with this again. And I'm starting to ask questions - and I'm not sure if there's answers out there - I think venting is probably helpful (and not to my stellar wife who is totally supportive, or my kids who are too young to understand). In any case, tell me to STFU if that's what I need to hear. Or to pull up my big-boy underpants. I don't even know what I need to hear. I think I just need to know that I'm not alone.

What's really getting me is that (1) This is the first time I've had 2 in one day (2) This is the first time that there's not been a cut-and-dried reason for this happening. In the past, I could say that I missed a dose of my meds, or I got wasted the night before, or was sleep deprived. And at times, I have done those things, all the while feeling great, knowing that the meds had my back. Nyquil and Sudafed? Love the stuff. A few extra drinks for Cinco de Mayo or just having fun? No sweat!

Not this time. I did have a cold and took sudafed 12 hours non-drowsy and had a couple of drinks the night before. So WTF? Why this time?! Was I just dumb lucky before? I know it wasn't the smartest thing do to, but I figured as long as I took my meds...(3) This is the first time I have been physically sore after the fact. I think it was the 2 in one day, then my back hurting so bad, and now that seems to have improved, with my hips now taking the brunt of it, yet steadily getting better. My chiropractor and acupuncturist have been very helpful in moving me along the road to recovery.

And part of me feels just plain stupid. I had a good thing, and wanted more - and now I've put it all at risk. Like can I go back to the 400mg and just live the straight and narrow? Or do I need to delve into the realm of new drugs and all the challenges they present?

In any case, tomorrow I get to go back to work, and I can't wait - I need some normalcy in my life, though it will be a challenge to see everyone again and explain it all over and over. I just need to get that behind me. Fortunately, everyone is very supportive.

Thanks for reading my rant - If anyone has any guidance I'm all ears (or eyes as the case may be). I'm having a really difficult time getting my mind around these last two tonic clonic seizures.

[Nakamova]

Hi Nozzala, welcome to CWE!

Don't worry about ranting -- your post doesn't even come close! If you really feel like letting loose, the "The Padded Room" forum is great.

I'm sorry to hear about your recent seizures. (Like you, I started on Dilantin, switched to Lamictal, and now have a few seizure-free years under my belt. And like you, I have no problem with having a few drinks from time to time.) Aging (and the metabolism changes that come with it) can potentially mess with seizure control. Now that you're 40, it's possible that you can't metabolize the Sudafed as easily as in the past. As you probably know, most people with seizure disorders are told to stay away from Sudafed (or pseudoephedrine in other forms) because of its stimulant properties. I would be more likely to suspect the Sudafed as a trigger than the alcohol, unless you had quite a few drinks and a hangover afterwards.

Infections can also lower seizure threshold, as well as sleep apnea or related nighttime breathing problems, so those might have played a role too.

Unless your Lamictal blood serum levels come in low, my instinct would be to hold off on raising the dosage, and to try to and avoid Sudafed in the future. But I have a bias against raising the meds for a breakthrough seizure, given the potential for increased side effects. If the side effects aren't a deal-breaker for you, you may feel safer on the higher dosage -- and there's something to be said for peace of mind.

I hope you feel better soon and are able to put the seizures behind you. Yes it's dispiriting, but your track record of responding well to anti-seizure medication bodes well for the future.

Best,
Nakamova