Epilepsy & Seizures Support Group

Please tell someone that you have gone off your meds. I did the same thing a while ago because I was completely seizure free at that moment. I was still in the "denial stage" at that point so I figured that I could stop and I did for about 5 months. One morning my family woke up to me having a gran mal seizure and I hadn't had one in a few years. I was cutting off my nose to spite my face. The side effects of these drugs can be bad, but I guess this is what they call "quality of life". I[ve had seizures on my job before, but I've never lost a job behind them. I hope I was able to help you, but you really do need to let someone know that you are off of your meds.
SBCGC

Hi, i understand completely what you are agoing through. i have had awful side effects from the medications and am currently going through my third medication change in only 12 months as the one i was on stopped working suddenly. i came off my old meds a few years ago because i had been seizure free for years, and it worked, but only for a few months, they then came back worse than ever and i had to go through all of the rubbish that comes with trying new medications again as they wouldnt prescribe the ones i was previously on any more. I did actually lose my job last year due to missing so much time off work, but it has helped in a strange sort of way. it has given me the time i need to get myself together, so its certainly not always a ad thing,.
Please do tell your doctor or sapphire nurse that you are off your meds so they can monitor your progress, they cant force you to go on any medication anyway, but if they know you have stopped you them around to keep an eye on you.
I do wish you well though, and hope you stay clear
xx

I think it is important to tell someone just in case some strange side effects occur so that someone will know what's going on.

I had my first seizure last Christmas day.

I have them pretty frequently and doctors concluded that migraines were the cause of them.

They had me on 25 mg of Topamax for six months and then I had a period of constant seizures so they upped me another 25 mg.

I "disappeared" mentally for the 4 days I was taking the 50 mg and because of the "crazy" behavior and the fact that I was seizing constantly he ordered me to stop taking it.

I lost a week and a half of my life....he never mentioned withdrawal effects and a lot happened that almost landed me in a mental ward.

It was so confusing not knowing what was going on and I've lost many friends due to what happened.

I don't take anything for my seizures now because I'm really afraid to.

I do my best just to accept why it's happening to me even if I don't know the reason.

It works for me most days and the support I get from family and the few friends I have left helps me.

Some days I consider trying something different but I know that I'd just be doing it because I feel like I burden everyone who's taking care of me.

The choice is yours though. Don't take anything that you don't want to, ya know?

But I think it is a good idea to tell someone.

I hope everything works out well for you. *hugs*

Hello klbm,

Like it or not you need to call your DR ASAP & let them know what you have done. If you can't tolerate one med, well, you have alternatives. Try a NEW med or try alternative treatments. Chek info on diets & neurofeedback.

Going off your medications w/out DR supervision is a big 'NONO'. Titration off meds should be done VERY slowly & that depends on a lot of issues such as weight, dose, time that you have been on the med.

My opinion: YES it is very likely your seizures will return.

Love Candi

I know what I did was stupid, but it took along time before I could get the doctors to listen to me. I went almost two weeks with seizures before a doctor finally said something was wrong. This is my way of taking back my life and doing something right. My doctor and my family will know what I did.

Hello klbm,

I know exactly how frustrating it is to get DRs to listen. That's why I started my Journal. I, also, like to take my caretaker w/ me to the DR.
To confirm everything.

Please, educate yourself about ALL aspects of Epilepsy. It took me 10 yrs to find a med to control my seizures w/ the least side effects. It took me 15 yrs to start learning what the DRs didn't tell me. Or I forgot as soon as I left the office. :)

Treatment, Support, Education & the infamous DR/med merrygoround has taken Time & Patience. But, I have been seizure free for over 21 yrs. So, it can happen for you too. Chin Up. Become pro-active. If a DR doesn't listen, then find another. After all, WE pay THEM!

Love Candi

Please do not think of what you did as "stupid". This isn't easy, and we don't always make the best decisions. We're all learning from each other, and that's why we're here on this site. No matter how long we have had this condition we don't have all of the answers. You did the right thing by reaching out to us, and we're glad that we're here for you. SBCGC

Good Morning klbm,

I can't count the times I have read of others doing the same. I did the same thing w/ my 1st med. Dilantin side effects were horrendous. But, I hadn't had anymore seizures, so, I thought I was 'cured'. I was soooo 'naive'. The seizures did return. About 2-3 mths later I woke up under my best friends bathroom sink w/ blood all over my face. I am not sure if I hit her bathtub or exposed sink pipes. Whichever, I now bear a scar under my eyebrow that will forever remind me of how 'naive' I was. Needless to say, I went back to the neuros & started trying new meds.

Back then there were no other 'options'. Not enough was known about seizure control back when.

You, on the other hand have a world of 'new alternatives', that are proving successful. Do some 'homework' & discuss your options w/ your DR/neuro.

Here is a link to another group that has a wealth of info. You don't have to join to read the info or posts.

http://www.coping-with-epilepsy.com/

This site has links that may be useful, too. :)

http://www.webmd.com/ Search for 'Epilepsy Support Board'.

I do hope you are having a good day. If you remain off meds then please consider one of the diets to raise your 'seizure threshold' & possibly prevent future 'episodes'.

Love Candi

When I was first diagnosed five years ago, I tried medication (can't even remember the name), but the the side effects were horrible, so I chose not to take it...long story short, my seizures went from one a year, to four in three months. I saw a new nuerologist and he suggested meds (a different one) and I couldn't believe it...no side effects (well, just some weight gain)! I guess I'm trying to say, there are a lot of options and sometimes, the first one isn't the best fit.

I am being weined of my seizure meds now. My doctor says if he was my first doctor he wouldn't of put me on the drugs in the first place 3 1/2 years ago. So I had a talk with my doctor not quite a month ago about going off them. Well I am off the Topamax now next week I am starting to cut down on the Depakote ER. So within 4 weeks I should be completly off the meds. But I am in contact with my doctor about it and I have plently of meds here to slowly go back on if needed. But it is scarey, but so far it seems to be going well. I am looking forward to feeling good again the meds have done a job on me over the last 3 1/2 years. They never found out why I had the one seizure and I have never had another. But the doctor did tell me I have to stay on the antidepressents until the spring, because the change in my body, so you may want to check into that. It takes a while for the meds to get out of your body. So I will do as he says and I am hoping all will go well.