Going to a new neurologist, so...

[Literophile]

I have some questions for gathering research on what I may or may not have.

What kind of seizure does this sound like?
I have a long enough warning that I can usually lower myself to the ground. My heart starts to pound and my left hand either grabs something nearby or clenches into a fist. I may or may not clench and unclench it--I'm not aware enough to notice that. I feel tired and groggy afterward. I have them in my sleep--I'll dream I'm having a TC, then wake up with my heart racing, my left fist clenched and feeling confused tired and groggy. A lot of times, I have no memory of before, during and after the event, but sometimes when I don't take my meds I'm aware the whole time, but still feel weird for quite some time afterward. It can take a few hours to get fully back to normal. I only have them once every month or so.

What does it mean if most of the seizures I've had were in my sleep or when I was overheated internally?

Is there any other kind of condition this might be aside from PNES? (I have those, too, but this is different)

I want to cover all my bases and go in prepared.


Thanks for your help, and wish me luck!

 

[Nakamova]

The ones where you are partly conscious may be simple partials, the ones with more impaired consciousness they could be complex partials. The majority (roughly 70%) of nocturnal seizures are either simple or complex partials, so that seems to jibe with what you are experiencing. Nocturnal seizures can be related to sleep apnea, or made worse by it -- I can't remember of you've been checked out for that or not.

Heat is a seizure trigger for some folks. It can also be a side effect from some meds, or a sign of dehydration, also a seizure trigger. If you feel yourself overheating, try drinking some water, or cooling off with a moist washcloth on your neck. There's a discussion of heat-related seizures in this thread form the archives:
http://www.coping-with-epilepsy.com/forums/f23/does-heat-affect-e-you-11536/

 

[Literophile]

The ones where you are partly conscious may be simple partials, the ones with more impaired consciousness they could be complex partials. The majority (roughly 70%) of nocturnal seizures are either simple or complex partials, so that seems to jibe with what you are experiencing. Nocturnal seizures can be related to sleep apnea, or made worse by it -- I can't remember of you've been checked out for that or not.

Heat is a seizure trigger for some folks. It can also be a side effect from some meds, or a sign of dehydration, also a seizure trigger. If you feel yourself overheating, try drinking some water, or cooling off with a moist washcloth on your neck. There's a discussion of heat-related seizures in this thread form the archives:
http://www.coping-with-epilepsy.com/forums/f23/does-heat-affect-e-you-11536/

I know they're just partial but I can't figure out what kind. I only started being less conscious when I started taking Tegretol. I think they're all the same kind, though. I've had two since I started taking Tegretol a couple months ago (which is consistent with my normal seizure pattern.)

The first was in yoga class toward the beginning or middle of February. I had just started taking Tegretol the week before. The yoga teacher was doing the routine a little more quickly than normal and I got overheated. Sister told me we did three full sun salutations but I only remember two. I remember raising my arms to start a sun salutation, then I remember the teacher saying something about being dizzy and then saying my name and then I remember sitting on the yoga mat with the left corner of it crunched up in my left hand and I felt weird and they were almost finished with the tree pose.

The next one was a couple nights ago in my sleep. I remember dreaming I was one of my story characters, and then I (as my character) started seizing and then... I don't quite know what happened. I think I woke up because the next thing I remember is lying on my side taking deep breaths.

Been tested for sleep apnea twice and they've both said no.

Thanks for the link, I'll check it out! And thanks for your input!

 

[Literophile]

GRRRAAGH! :taz: The soonest appointment with that neurologist is April 12th and my headaches are so bad these days my doctor prescribed me Fioricet with Codeine!

 

[Rae1889]

aw! try fevefew. it worked for me so it may work for you. Or have you linked it to any foods lately?

I have noticed that when I eat bananas that I usually end up with pretty bad headaches, so I try to avoid them unless I take an advil or something first. Try keeping a diary of the headaches. Bananas and citrus fruits are a common food trigger for headaches.

 

[Literophile]

I could try feverfew. That's a good idea.

No, I've linked it to time of day. Most of my headaches are in the evening and most of my seizures are at night. The only exception--and this applies to both of those--is when I get overheated.

 

[Rae1889]

are you making sure you are drinking enough water through the day? and eating too? I remember Nak once told me that alot of my headaches and seizures could be because I dont eat during the day, and rarely drink anything at all.

 

[Literophile]

are you making sure you are drinking enough water through the day? and eating too? I remember Nak once told me that alot of my headaches and seizures could be because I dont eat during the day, and rarely drink anything at all.

OOooooohhh.... *looks guilty* Ahm... well, Neurontin makes me not hungry during the day and... well, I've been trying to push water... Trying anyway.

 

[Rae1889]

hmmm.... neurontin made me unhungry too! but more so than usual.... just drink lots of liquid and go eat a sammy!

 

[Literophile]

Mmmm... sammich. *runs off to make sammich*

It seems a lot of AEDs make you unhungry. My friend told me Zonegran made her unhungry and now Topomax is making her unhungry. She has epilepsy, too, and the funny thing is--I didn't have it when I met her. She always jokes that maybe it IS contagious after all!