Epilepsy & Seizures Support Group

Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...

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Brain & Nervous System
/ Epilepsy & Seizures Support Group

new with pending tests and I have questions

vannillabear
vannillabear
So I just had an EEG and it was positive for seizures. Here's the kicker, I have never had any. I'm getting an MRI with contrast soon and I am doing another EEG with sleep deprivation. Epilepsy kind of runs in the family, so far it's only my great grandmother on my moms side that had it as far as I know. So far this last year I have been diagnosed with hashimoto's and IBS-D. this was a shocker for me.
My questions are this:
What are the best meds with minimal side effects? I react to every med out there! I've only found I'm good with brand names.
Does diet play in it at all?
I have had two insidents that were recent that has never happened before. I was dozing off on the couch and all of a sudden my head from the neck up startes twitching uncomtrolably, I can't talk, I can't move, I can't even stop it, but I am aware of everything around me and I can hear. I kept my eyes closed for the most part, I could crack them open but all I see is blurr. It's only happened twice in the last month. And then my husband says I'm twitching at night, I've never done this before.
Is this a seizure?
I went to one doctor, but at the time we thought it could have been a stroke and he said no and it was just me falling asleep. Since then, I've been to a neuro for migraines that have actually gone away since the last thing or episode.
Any advice would be great!
deleted_user
deleted_user
I went through the same tests' been dealing with this for almost two years now. Stopped following through with it.. but then started again when it all started up again in May... then I soon started having them every day for two weeks. You could imagine how stressed and tired I felt as well as very emotionally drained. So bad that my mom wanted to put me into the hospital for them to push the tests faster.
Needless to say .. my mom is 100% sure I have seizures ( you can read my last post .. ) The Dr's are questioning it too.
I do know EEG 's do not always show seizure active so you were "Lucky" I guess that it happen while you had an EEG .. me .. not so lucky. I am just tired of going through all this and I take Lamictal and Welbutrin for my Bipolar.. Lamictal is to help treat seizures.

I hope everything works out for you..
vannillabear
vannillabear
Thanks, I did read one of your posts, I think it was you. The doctors are saying it's panic attacks? Maybe it wasn't you. My mom has bipolar and she goes through episodes of crying uncontrollably and gets confused and shakes, She really gets bad when super stressed or in an accident so this could be why they keep bringing that up for you even though it's not the case. I hate when doctors know your weaknesses and use it against you.
I on the other hand don't have bipolar or depression. I'm considered very healthy, and I felt fine for years except for the so called IBS-D, that's one I think is a crock, it only means they don't know what's wrong with you. I think I've had this Hashimoto's with my thyroid all my life but they didn't catch it until 2 years ago. I was livable up until last year, I got super sick and was in pain all day everyday for a month, that's when all this testing/ doctor after doctor started. I'm hoping they can find something fixable through all this.
deleted_user
deleted_user
I did mention that it was questionable it was panic attacks and the other neruo dr at the hospital told me to see a physic and left. ( I believe he looked at my past medical .. bipolar II and that was it )

I can be perfectly fine and it all of a sudden happen. In fact after a month of nothing.. just about an hour ago .. ironically it happen again. I was simply just sitting in my recliner reading and watching TV and there I go.

Dr's are so quick to diagnose you with something so simple because they do not know what else to do and they give up. That is why I have personally lost all trust in MD's and it took me awhile to go back. But because my mom keep harassing me to go back I did. Though I have a wonderful DR who has not given up.

I am sorry your mom is going through so much too ... has she followed up with another DR ?
vannillabear
vannillabear
No, but they are running more tests, and she now wants to get tested for epilepsy now that I have it.
I experienced the same treatment from doctors until I went to this one, he is a DO and he finally listened to me. I might be finding a new endo soon too, depending on the next followup appointment. She's just not treating my thyroid thing very seriously. So we'll see.
I'm sorry you struggle with this.
I just want to know if what I experienced was seizures or not, I guess time will tell when I finally get the results of these other tests.
vannillabear
vannillabear
My mom also has fibromialgia, and something wrong with her esophagus, and she claims to have heart issues, but they can't find anything wrong with it. and she has spurs in her neck and she has HPV. So she has alot going on.
deleted_user
deleted_user
With you having IBS proper diet is highly important. The seizure med I had the best results with is Tegretol XR. the only side effect I had was double vision from the dose being to high for my system. been on others but not good experince for me.
deleted_user
deleted_user
With you having IBS proper diet is highly important. The seizure med I had the best results with is Tegretol XR. the only side effect I had was double vision from the dose being to high for my system. been on others but not good experince for me.
deleted_user
deleted_user
With you having IBS proper diet is highly important. The seizure med I had the best results with is Tegretol XR. the only side effect I had was double vision from the dose being to high for my system. been on others but not good experince for me.
deleted_user
deleted_user
With you having IBS proper diet is highly important. The seizure med I had the best results with is Tegretol XR. the only side effect I had was double vision from the dose being to high for my system. been on others but not good experince for me.
deleted_user
deleted_user
With you having IBS proper diet is highly important. The seizure med I had the best results with is Tegretol XR. the only side effect I had was double vision from the dose being to high for my system. been on others but not good experince for me.
deleted_user
deleted_user
With you having IBS proper diet is highly important. The seizure med I had the best results with is Tegretol XR. the only side effect I had was double vision from the dose being to high for my system. been on others but not good experince for me.
deleted_user
deleted_user
With you having IBS proper diet is highly important. The seizure med I had the best results with is Tegretol XR. the only side effect I had was double vision from the dose being to high for my system. been on others but not good experince for me.
deleted_user
deleted_user
With you having IBS proper diet is highly important. The seizure med I had the best results with is Tegretol XR. the only side effect I had was double vision from the dose being to high for my system. been on others but not good experince for me.
deleted_user
deleted_user
With you having IBS proper diet is highly important. The seizure med I had the best results with is Tegretol XR. the only side effect I had was double vision from the dose being to high for my system. been on others but not good experince for me.
vannillabear
vannillabear
Thanks, I'll check into that one. I've noticed that I do ok with low doses of meds, but react if they get too high and I can't do generics. I am on a strict diet for my IBS, I'm already mostly gluten free, dairy free, and I can't have certain types of wheat, and high citrus fruits and nuts oh and caffiene or tea. But I was just wondering if anyone had heard of anything else that is bad for seizures. Like fore my thyroid issues I found out that almonds and soy interfere with thyroid hormone production so I am off those as much as possible too.
Thanks for your response. I'm not sure what type I have or anything, and this scares me alittle, I'm just hoping they found mine early on that I won't struggle as many of you. I feel so bad after reading some of the posts on here. I wish doctors could find a miracle for you guys to take this scary thing away.