What do you do when you know a seizure is coming?

[The Mathematician]

What do you do when you know a seizure is coming?

I have gotten to where I now have a TC seizure every 5 days, in the morning. Tomorrow, for example, is the fifth day after my last seizure, so I will probably have a seizure tomorrow morning. What should I do? Just lie in bed after I wake up and wait?

I've had 24 TC seizures so far, so you would think I would have developed some kind of system by now, lol. I guess I didn't expect them to become this regular.

 

[Wally]

Wow! It's definitely time to talk to a new doc. 24 seizures and you can predict them? Thats no good I was on Keppra after 2 or 3. Try to find a Epitologist. ( a Neurologist that specializes in Epilepsy). This is the right place for info and help Good luck.

 

[momof3boys]

WOW~ Thats alot of seizures! And to know when the next one will be coming! I would for sure be checking out other neurologists and get on board with one that can control them with a medication. I hated the fact of being taken off my medication for my VEEG in march, I cant imagine having seizures so often and practically knowing when they are going to happen next!

Hang in there. I hope you dont have any more seizures.

 

[The Mathematician]

My neurologist has run all kinds of tests, but was unable to find anything. He put me on a few meds for awhile, but they didn't help much, and the one that did prevent my seizures caused crazy side effects. He hasn't even officially diagnosed me with epilepsy. I mean, I don't know what else could be causing seizures like this, but my neurologist doesn't seem to believe it's epilepsy.

At one point he even thought it could be hypoglycemia and sent me to another doctor (a nutritionist? I forget now... my memory isn't too great these days). This other doctor decided it wasn't hypoglycemia and sent me right back. :/

Right now I'm trying to see a new doctor - a neuropsychologist, I believe. I don't know. Apparently I'm crazy or something?

It is scary knowing when they come next. I suppose I should be grateful in a way - at least I know and they don't come unexpectedly out of nowhere. I wonder sometimes if it would be better that way though, lol.

 

[Wally]

Wow! Hang tough man.

 

[Nakamova]

The fact that one med helped control your seizures suggests that they ARE epileptic in nature. Since meds aren't working out for you, you may want to look into neurofeedback. More info here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

 

[Emee]

Would your dr approve you taking extra med's when you know a seizure is coming? The minute I feel a seizure or migraine warning I take an extra pill.

 

[jyearta]

Do you have deja vu, or is it like you said every 5 days?

 

[The Mathematician]

As predicted, I did indeed have seizure #25 this morning. :/ But, the good thing about knowing it was coming was I knew to stay in bed this morning until it happened. By having the seizure in bed I was able to avoid falling and hitting my head or hurting myself some other way. So it wasn't as bad as it could have been (and has been before).

Nakamova: EEG Neurofeedback sounds very interesting. I appreciate the info. Is this something many neurologists practice? I'll have to ask mine about it.

Emee: I'm not sure. It's difficult to explain: I don't always feel my seizures coming. The only reason I know when they're coming is because of the pattern they've shown. I write down every time I have a seizure and in doing so I've noticed that they occur every 5 days. There have been a couple of times where they have happened on the 4th day, but usually it's the 5th. It almost feels like a build up of something, you know? On the days I have a seizure, like today, I feel very... calm. Very relaxed, and level-headed. Over the next few days, I'll begin to feel more tense, more confused. I'll start shaking a little, and twitching more. This morning, for example, before I had the seizure, I was twitching quite a bit. Now, after the seizure, I'm not twitching at all. I don't know. I really need to be telling my doctor all of this, lol. I'm still waiting for that appointment, though.

jyearta: My seizures are every 5 days, but on the other days I experience deja vu sometimes.

 

[petero]

I've never really known very far in advance to have any kind of reaction period!
mine have no regularity I've noticed.
definitely not like yours

 

[Nakamova]

EEG Neurofeedback sounds very interesting. I appreciate the info. Is this something many neurologists practice? I'll have to ask mine about it.

It's not ordinarily done by neurologists, and many are suspicious of it. Neurofeedback has been slow to gain acceptance because the studies have been relatively scattered and small-scale. Some of the very first uses of neurofeedback were in treating refractory epilepsy cases where meds had failed. Neurofeedback has found recent success in treating kids with ADHD/ADD disorders, and several sports teams use neurofeedback to train their athletes to have heightened focus and alertness. The U.S. government is currently sponsoring several large-scale studies of neuofeedback and PTSD, so there's hope that if the data is convincing, then neurofeedback will be covered by more insurance plans (very few cover it currently).

Neurofeedback is often practiced by therapists or counseling psychologists, but practitioners aren't required to have a medical degree (there are licensing and training organizations, however). The actual procedure uses EEG technology to train the brain to produce beneficial brainwaves and suppress abnormal ones. It takes 20 to 40 sessions -- as if you were slowly developing certain muscles at the gym -- but the results appear to be lasting once the sessions are over. (This is unlike meds, which lose their effect when you stop taking them).

A good book about neurofeedback is "A Symphony in the Brain." Below are other links with more info:
http://www.eeginfo.com/what-is-neurofeedback.htm
http://www.npr.org/templates/story/story.php?storyId=130896102
http://www.nytimes.com/2010/10/05/health/05neurofeedback.html?pagewanted=all

 

[iluvscoobydoo04]

The twitching and deja vu could both be simple partial seizures. If a simple partial does not stop, it can generalize and become a tonic/clonic. You might want to note the times and duration of your twitching and deja vu to take them to the doctor when you see him. That might help him make the diagnosis. Hope this helps and hope you feel better. Nobody should be going through this. I told my husband I want a refund on my body, the electricity is shot to s*it.

You can read more about them at epilepsy.com and look for simple partial seizures. I would link it here, but it will not let me.

Good luck