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been there, done that?


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This is the first time I've ever ventured out onto a forum to discuss my epilepsy. I'm not one to discuss my feelings about my epilepsy, much to my wife's frustration, but the frequency of my seizures is increasing. It's time to just talk to others and get their perspective and hear what they've been through - if you don't mind...

First diagnosed with a Tonic/Clonic 'episode of seizure' when I was 18 - a day I had a serious hangover. I was was put on Dilantin and felt brain cells leaping out of my head at warp speed. I couldn't follow simple conversations and had no attention span. I took the Dilantin for a week, then weaned myself off. Didn't have a seizure for another 6 years.

That next seizure, however, was also a day I had a serious hangover. Unfortunately, I was driving at the time. Fortunately, my bud in the passenger seat realized what was happening, forced the car into the soft median, and got help. This time, the doctor put me on Carbatrol. I was a good boy and took my meds, but I didn't give up a drink every now and then.

I got engaged soon afterwards, and my fiancee helped me through my next couple seizures - no hangovers this time. The docs changed my meds to Tegretol. Okay. Things went well for another year or so, until I was driving on the interstate in a pickup truck when I had a seizure. I woke up in the hospital with a face full of broken glass and a broken back. Fortuantely I didn't hit anyone - just sideswiped a tractor trailor and was launched into a ditch. He turned out to be a part-time EMT. LUCKY!

I continued to have seizures, though, and all of them were really bad. The only common demoninator was if I had missed a dose of medication. ONE dose. Clockwork.

Here are my major frustrations and anxieties - and I wonder if anyone has experienced the same thing or has any advice.

1. I've been on every mainstream anti-convulsant on the market targeted for generalized tonic/clonic seizures. Dilantin, Carbatrol, Tegretol, Lamictal, Keppra, Depakote, Zonegran, and Topomax. Nothing has really controlled my seizures and the most I ever drink is a glass of wine at dinner once or twice a month.

2. Not including the first two spans between seizures, I would go about 7 months between seizures. The time between siezures is decreasing - i'm averaging about once every 2 months. I don't drive. At all. I'm completely dependent on others to go places where the limited Mass transit system doesnt, and it takes a while to get where I want on a bus.

3. The last few seizures have been REALLY bad. The last day I seized - I had two back to back - one was over 6 mins long. I was out for a full day, and was soggy-brained for a week. My doc did another MRI and CAT scan but found nothing.

4. I HAVE to take my meds every day each day or I will get a seizure within 12 hours. WTF? The doc has tried increasing my meds, but I get completely dizzy or incoherent, even if I try to 'tough it out'. It sucks. My doc has suggested the brain pacemaker, the VNC thing. Whoa. She's rated one of the top epilepsy doctors in the country, supposedly and has done it with other patients with success when combined with medication. Anyone here tried it?

I got really depressed and saw a therapist. I was depressed and took it out on my wife in the form of anger and apathy. It's helped, but I still have this cloud over my head - this worry that my next seizure is going to leave me just a little less coherent than before. Then the next one, then the next one, etc, etc... It's taken a while, but I know I'm not as sharp as I was, and my memory has completely disintegrated. It's affecting my work, and my wife knows it. She understands, though.

So, it's 2 in the morning and I got to get to sleep.

Thanks

theTuna

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Welcome to the Board!

I have no advice. Just wanted to let you know sometimes it takes a little while for someone to find your post and respond. My son has benign rolandic epilepsy (just dx April 1, 2008). So we are new to that med-go-round, he is on depakote.

Wishing you all my best

Another one

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Is the "that" in "been there, done that?" the tuna? Can't help asking. Heh.

The first thing that jumped out at me was that they switched you from Carbatrol (extended-release carbamazepine) to Tegretol (immediate-release carbamazepine), and they apparently expected that it would accomplish something. I'm not sure what the reasoning behind that would be.

Anyway, it sounds like yours are a lot more "exciting" than mine, but a lot less often. I pretty much stick to complex partials, and that's about it. Never had anything generalized, tonic-clonic or otherwise. They were happening several times a week at one point, but from people's descriptions of what tonic-clonic ones are like, I'd rather have half a dozen of mine than one of those, but I guess we don't get to choose.

I know all about the no driving thing. I've never had a driver's license and have driven all of twice in my life while I had my permit when I was younger. It is kind of a pain in the ass, but at least I live somewhere with a pretty good public transportation system. Depending on where you are, it can be fairly miserable, though. Visiting family in some of the places they live, I feel trapped, since I can't really get anywhere without someone else.

I guess I'll keep going with the disjointedness of this, just saying whatever comes to mind rereading your post. I also have had issues with missing meds, although it's been more or less of a problem depending on which med. Some of them I could tell right away if I'd missed taking it by an hour, and others haven't made a difference unless I forget a couple days in a row. Currently, I have to take Keppra four times a day. Any less often than that, and my brain starts to get noticeably weird if I'm a few hours behind. On the plus side, at least it seems to be working for me otherwise.

Seizures becoming more frequent as you have more of them is pretty common. That's one of the reasons why they make a big deal about trying to control them as soon as possible, because they have a tendency to happen more often and be worse when they do happen if they aren't stopped. Mine were very infrequent at first, and pretty mild and easy to miss. We didn't even figure out that's what was going on with me until they started to get progressively worse, and they eventually went from once every few years to once every few hours.

I'm also familiar with trying a bunch of different meds and them not working and having crappy side effects. I went through that with a bunch of them for a while, too, before finding something that seems to have been working for a few months now. I don't have any experience with electronic gadgetry attached to my brain, but I know the subject has come up on here before. Off the top of my head, I can't remember who was talking about it, though.

And speaking of not remembering, I've also "been there, done that" with the memory/thinking deterioration. Getting my seizures under control has made a huge difference with that, but I can still tell that I'm not quite all there like I was before they started in the first place. It does suck. On the plus side, at least I've gotten that end of things dealt with well enough that it's not my biggest problem anymore like it was a couple years ago.

I think I'm just babbling right now, so I'll let someone else take a turn.

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Guest soon2bdownunder

Obviously we have all "been there done that".

I wonder why your Dr. doesn't push a surgery, or has that been offered? I've had it done twice, so I always tell my neuro when he continues to push that VNS, that after he has 2 brain surgeries then we can chat about it, but until that happens shut up. Have you checked out the VNS message board? That might be a good idea. Some good results, but alot more not so good.

My last big flop left me w/ a ventilator shoved down my throught. The status went on for 6+ hrs. the neuro said.

I'm surpised you haven't been put on phenobarbital. It's a last resort when nothing else works. I was very happy when I got off it. Some say it's great for them. I need the last of my common sense intact.

I assume you have ativan or valium handy 24/7.

I hope things work out!

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