New Here and scared about withdrawing meds!

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Lola Lolushka

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Hi everyone,

So happy I found this website - I was diagnosed with Juvenile Myoclonic Epilepsy nearly 20 years ago, and after 3 different types of meds, I am finally being withdrawn from Epilim.

When I was in my late teens/early twenties, I wasn't compliant with medication, and I would have a few drinks - rebelling I guess. So after several more seizures I was put onto Lamictal as well as Epilim.

I have been seizure free for 5 years and my neurologist is withdrawing me from Epilim, but keeping me on Lamictal.

Can someone please help? I am scared that I will have another seizure, and wonder if there are things I can do to avoid seizures if I feel like one is coming on.

Sorry to write so much - I know that no one signed on to proof read a novel!
 
Hello Lola:hello:

Sorry, I don't know anything about JME or the meds you are on, so I can't help much. But there are lots of knowledgeable, helpful people here who may be able to advise you or direct you to information on certain diets that have been shown to help in some cases. There are also people who've been helped by neurofeedback.

I just wanted to welcome you and reassure you that your question was by no means overly long:) It was a "tweet" compared to many, including some I've written:)
 
Dear all! Help him guys! I do not have any idea how to avoid seizure if its coming, but yes if ever i feel something i stop doing all the stuff and give my brain COMPLETE rest.
 
Lola,

I am not familiar with JME, nor Epilim (Depakote). I am familiar with going off siezure meds, though. I'm on my fifth seizure med right now.

The slower I go off a medication the less the negative affect on me. I take teeny tiny steps, even less of a decrease and slower than my neuro tells me to. Do you have auras? If so, you can also ask your neuro for a prescription of Ativan if you feel a seizure coming on. I went of Topamax and Trileptal cold turkey. Very bad idea. Very bad. Don't do it with any drug. My body was twitching both times and I learned to go slow and take the alternative meds my neuro gave me instead.

I'm on Lamictal. Go up slowly on that one, too. The side effects are notorious, and they can be avoided as much as possible by going up in dose very slowly. Now that I'm on it I like it. Better than the other ones anyway. It is the one that's left my thinking ability most intact.
 
Hi Lola,

How much epilim and lamictal are you currently on?

As you know yourself, the lifestyle changes may be the reason for the lack of seizures, so perhaps you might be fine (unless you are intending on rebelling again soon!). But I think you'll never know unless you try. It is scary, it's a real leap of faith, especially since you have been doing fine for 5 years.

I agree with Endless, it's better to reduce really really slowly. Perhaps take time off work so that you have plenty time to rest. I also agree with survivor about giving your brain a rest - it cannot be underestimated.

You will really need to mind yourself, drink tons of water, eat well, etc.

best of luck!
 
hi Endless and Eibhlin,

thankyou - much appreciated. The epilim is being reduced bit by bit (100 mg at a time) on a fortnightly basis.

I currently take 1000 mg of epilim and 200 mg of lamictal per day. There are no plans to increase lamictal. I do get auras, and they really get me nervous. Never heard of altivan, will have to research it! Is it good?

When i get auras i try to relax, i smell jasmine oil (apparently aromatherapy is good) and i do this thing with my hands - i take one finger and circle it around the palm of my other hand. I focus only on that.
 
Lola I can sort of sense with what you're going through. I was diagnosed with epilepsy between 16-18, all a blue. and yeah i rebelled quite a bit msyelf. E, weed,alcohol, opiates, all the goodies. till i got to college. now its nothing. but anyways, when i go seizure free for a long period of time my doctor would want tp ween me off. yes, it can be scary but if you truly tust your doctor it will be better in the long run. i know its easier said that done. i have been trying to be wheened off multiple times with failure. just paranoid i guess. Even when I rake my ant-anxiety meds
 
Wow, 16-18. Tough age to be diagnosed. Have you had many seizures? Long time you have been diagnosed (i understand if you don't want to answer that one)?

It's nice to talk to someone who also fought it - drugs, alcohol etc. Mine was limited to weed, binge drinking, refusing to take medication at night (and lying about it). I'm from a reasonably small city in australia and other drugs aren't exactly readily available. But i wasn't interested in that. I found myself taking strong codeine when down about it.

What is your control now? What meds are you taking?
 
I am only in my 20s, so not real long. I'be had a total of about......10-15 maybe? Anti-convulstants are drugs that you should never refuse to take. Yes, some do have horrib side effects but they will help in the long run. I take 400 mg Topamax, 1500 mg Keppa, 600 mg Lamictal/day and i take ativan for my SAD due to my epilpesy
 
Yeah from about age 13 i turned into the typical teenage girl - point blank refusal to do the right thing. I was diagnosed at age 8 and i'm now 27. It took a while but i grew out of thinking i am invincible - luckily! Nearly 20 years and i've finally achieved something.

Call me stupid (actually don't) but what is SAD?
 
Yeah I'm finally getting there with my Edication. things take longer when you gotta put things on hold for medical reasons but eventually they get done. I'm glad you've gotten things straighened away. Don't feel stupid. It's Social Anxiety Disorder. I never had it before. Its horrible. Like when I go into a place with alot of people I get real sweaty, heart starts racing, I hyperventalate....and like I get reaaaaaly shy with girls. I get real choked up talking to them. I never used to be like that
 
I just realised what a fool i had been. Plus i couldn't bear the humiliation of having another seizure at work. Shallow i know, but seizures and dignity don't really go hand in hand! I used to be so outgoing but ever since i went on to epilim and lamictal that changed. I won't ever walk into a room (eg. a bar) on my own even if i am meeting someone. Evidently nothing compared to what you have to deal with though. Interesting (for want of a better word) that it is gender specific.
 
Yep thats exactly the way I got and I couldn't control it. It wasn't even part of my personality. It just sort of crept up on me. Don't ever be paranoid about seizing while at work though. Although many do. It can cause manu problematic things (with co-workers, injuries, etc.) I don't think I understand the last sentence you said though
 
I never really thought about it when it happened at work. Until my second last one - I had three in one day. One of which was at work in front of a LOT of people. Ended up with a fractured (well, shattered) cheekbone/eye socket. It looked lovely. About a year later I asked a friend what really happened, and she refused to tell me. Said it's best if I didn't know. That's when I started to worry about what other people think!

You said that you get REALLY shy talking to girls but you never used to be like that. Gender specific.

Hey you're in the US right?
 
It appears that I might possibly be blind - if I had looked, I would have seen that your location is Baltimore. So, forget that I asked that question. It never happened... Oops
 
My daughter made the decision about 3 yrs ago, that she would rather take the chance to have an occasional seizure than to put up with the horrible side effects from the meds.

Her seizures are currently controlled, or her seizure threshold is raised after making major changes to her nutritional choices three years ago.

I learned when Rebecca was taking medication that we needed to withdraw the med at a much slower pace than what the doctor recommended. We also increased certain supplements that were suggested for brain and body health at the time. In addition, the nutrition was also extremely important.

It wasn't a quick fix but it sure has made an improvement on the quality of her life.
The emotional component is also part of the equation. Keeping a positive outlook is important.
 
Hi, thanks Robin. What sort of medication did your daughter take? And how long did it take? Thankfully I haven't had major side effects - well, not that I have noticed.

I haven't had any supplements suggested to me. I've had aromatherapy recommended to me, what are your thoughts on that?
 
Lola Lolushka said:
I never really thought about it when it happened at work. Until my second last one - I had three in one day. One of which was at work in front of a LOT of people. Ended up with a fractured (well, shattered) cheekbone/eye socket. It looked lovely. About a year later I asked a friend what really happened, and she refused to tell me. Said it's best if I didn't know. That's when I started to worry about what other people think!

You said that you get REALLY shy talking to girls but you never used to be like that. Gender specific.

Hey you're in the US right?
Click to expand...

I'm sure it looked beauitful =) And i would think if I did something, and someone told me "its best not to worry about it", i would worry about it even more, but that's just me......
And yes, I do, - but i thought that came alot with the SAD.

Yes I live the US
 
Lola,

That's a great tip about the jasmine oil. I used to get auras while on epilim but not lamictal, and I also get auras when reducing, so it might actually be part of the detox (hopefully!).

It's great that you're reducing so slowly. Fingers crossed!
 
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