Hello everybody

[Elsie]

Hope I'm doing this correctly. I've been lurking quite a while, reading, and this is more support than I've gotten all my life. Thank you all.

I had a fainting (?) spell 48 years ago, hospital stay and eeg and determined it was epilepsy. Put on Dilantin. Became allergic with rashes a year or so later. Put on Phenobarbitol. Crawled up into Mom's bed and refused to get up. Changed to Mysoline (Primidone). Yuck! After 25 years of horrible depression including (thankfully unsuccessful) suicide attempt, a Dr. told me the Mysoline metabolises to phenobarbitol...sheesh...drs. ...

6 or so tonic-clonic seizures over those years when I was non-compliant with taking my meds, and then probably 10-15 years of nothing, I did a trial without meds. 2 years later another seizure. So, as with the times I didn't take medicine properly, this showed I do need something. Changed to Tegretol.

Presently taking 150mg trileptol 2xday. Not even a theraputic dose. But apparently works for me. Side effects presently are drowsiness, once in a while little dizzy, but most troubling slow memory. Speaking slower due to thinking for that word that I'm sure is in my brain somewhere.. I have troubles grasping new information, learning things (need repetition) - all this new electronic stuff is so difficult for me to learn...

And I'm a little sensitive to being thought of as stupid...since my brain acts that way. I dropped out of college after 2 years, barely scraping through.

Anyway, I admire how all of you cope with much higher drugs and more problems than I have, and that's one reason I've lurked so long, I feel so blessed to be able to drive and lead an almost normal life. I hope you all don't think I don't belong here.

[epileric]

Don't worry, we don't have a level of problems or pain that someone has to achieve before they belong here. I'm glad you got a lot out of reading everyones contributions to the site & look forward to yours.

I Know how you've felt re. being on all those meds. Growing up I was on Mysoline, Dilantin, & Valproic Acid at the same time. In my later teens they changed the valproic acid to Tegretol. Finally in my mid-twenties a neurologist took me off of everything except the tegretol with no change in my seizures but so much less side-effects.

Anyway, make yourself at home & enjoy the site.

[Endless]

Hi, Elsie,

Welcome!

I'm on Trileptal, too. It's driving me nuts. If you'll excuse this, my whole life I've been known as an extremely intelligent person. Then came Trileptal. I can't understand what people are telling me to do. I think really slow. Sometimes I talk really slow. I can't figure stuff out. It's kinda like my brain is living in a puddle of pudding.

I don't want to go off the trileptal because it's working. But I don't want to be thinking in the slow lane, either.

If my epileptologist wants to change my meds, I don't know what I'll say.

I didn't have any good advice. Just sharing the misery.

[RobinN]

Hi Elsie -
Trileptal was Rebecca's fourth med. She wasn't on it very long, when there were signs that her body did not like it much. Not sure why they tried it when I later learned that it was related to Tegretol. She had a bad reaction to that also.

I am glad that you decided to join us. There are a range of issues that are discussed here at CWE. It is a rollercoaster ride for many of us. Some highs and some lows.

Thankfully my daughter is doing well ... since January. She does not drive. Even though it is 6 months seizure free here in CA, I have asked her to wait until she has been seizure free for a year (or two I am thinking). She is lucky to have two parents that appreciate the opportunity to drive her where she needs to go.

She too has thought of herself as stupid from time to time, but we work very hard to focus on her positive traits, which are many. I hope you can encourage yourself to do that same.

[Elsie]

Thank you, I appreciate the replies.

My Dr. always said the tegretol and trileptal had less side effects than the others. At least I don't have the horrible depression I had with the other.

Reading here I've determined that I actually had seizures I didn't recognize when I was very young. One was a very distinctive aura that I still remember vividly (and I never thought I had auras). And some kind of spells where I would stare off. I always thought I had the ability to stop those and refocus, but it just felt so darn good to just stare off. I'm sure there was something going on. Mom would yell at me not to do that, scared her I guess.

I wish I could go back and understand what everybody was saying at the time. And read old dr. reports. 1st EEG had something but dr. said was normal for young girl in puberty. Huh? And 2nd dr. said I just had more electricity in my brain, and in response my Mom said you don't have E. It's just more electricity.

So if it wasn't E, I must have a monster in my brain. Yes, a monster. Or very serious mental health issues that would land me in straight jacket some day. I struggled for years and years with that fear. Now as a result I am a big fan of facing whatever one has head on, calling it the proper name, and dealing with it. The alternative is crippling fear. I always supposed I'd end up in assylum with shock treatments. Now I just have E and I take medicine. Much better alternative.

Anyway, I'm rambling. But thank you all. Right now I'm trying to learn all the new names for things. I like all the info here.

Robin, you'll find this interesting: I had multiple food allergies all my life, eczema from that, was super skinny and no appetite, dry mouth couldn't swallow food very well, all before my first sezure. Also, in my baby book a notation from my mother (I was not yet 1) "she is high strung". I wish all that was addressed within the context of my E.

[Nakamova]

Hi Elsie -- welcome!

Please don't worry about whether or not you "belong here" -- CWE is for everyone who's dealing with E in one way or another, whether patients, parents, or partners, regardless of the status of their seizure disorder. There's so much support and information here, and every member adds to the community and the archive of advice.

The stuff you mention about food allergies and lack of appetite definitely seems to indicate that either nutritional imbalances and/or low blood sugar may well have triggered the initial seizures. I, too, wish that my neurologist had mentioned these possibilities at my diagnosis. I've had to learn on my own, and through CWE about triggers, and proactive and alternative approaches to coping with epilepsy.

Best,
Nakamova

[PhylisFeinerJohnson]

Welcome Elsie!

Like you, I took Dilantin when I was young. (There weren't many options: it was Dilantin or Pheno...period.) It made me a zombie, my long, beautiful hair fell out and I have galloping gum rot as a souvenir.

And like you, my parents were in denial. Even though my step-mother was a psychologist and my step-father was a surgeon. My step-father said I just had "uneven brain waves" and although I walked into walls, fell down all the time, almost drowned in the shower, everything was A-OK. I just had "uneven brain waves."

The "E" word was never mentioned. But I was treated like a pariah. It wasn't until 10 years later that I finally learned what the problem was. And like you, it was sort of a relief!