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New here, would appreciate feedback and advice!

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Old 03-11-2018, 03:35 AM   #1
Join Date: Mar 2018
Location: Belgium
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Cate68 HB User
New here, would appreciate feedback and advice!

Four years ago, after coming back to work after being on longterm sick leave for severe burnout syndrom, I started having blackouts. They have changed over the years, and I have gone from staring into space to moving and talking. An average attack lasts 1-2 minutes according to witnesses. I never have any recollection of them.

Two years ago, I was put on Keppra and worked my way up to 2000 mg daily. I was told by the neurologist that several EEG:s and one MRI had not shown any abnormalities, but that it must be epilepsy since all the symptoms matched.

Keppra never did anything for me, and last year I switched doctors and was put on Lamictal.

However, Lamictal was worse for me than Keppra. Keppra was mainly useless but also harmless, whereas Lamictal had some pretty nasty side effects. It would make me feel like I was leaving my own body and, at one point, I even had hallucinations. After weaning of Lamictal (I never made it past 50 mg a day), the problems went away and have not come back.

I have now been referred to an epilepsy specialist who concluded that I am an interesting and complicated case. This doctor has now prescribed Vimpat. I was told there are three drugs you should start with after being diagnosed as they generally have fewer side effects: Keppra, Lamictal, and Vimpat. If Vimpat does not work either, we will try other drugs. According to my newest doctor, there are at least five or six different drugs to try before switching to Depakine, given the many side effects of the latter. The other two neurologists I've seen wanted to switch me to Depakine as soon as Lamictal and Keppra did not work out for me.

I keep my fingers crossed Vimapt will turn out to be what I need. However, there is one thing that slightly worries me and please don't get me wrong: I read that you should avoid alcohol when on Vimpat. When I have asked this question in other forums, I've had replies such as: "Which is the most important thing to you; to get well or to be able to get drunk?" However, it's not at all about that. I have no interest in partying or getting drunk. However, I would like to be able to drink a glass or two of really nice wine from time to time. To me, that is quality of life.

I cannot figure out why alcohol should be avoided on Vimpat...the only explanation I've found is that Vimpat can make you dizzy and nauseous and alcohol can make that worse. On the other hand, if I feel dizzy and nauseous, I doubt I'd want to drink anyway...

But I have not found anything about Vimpat affecting the liver as such, unlike drugs like Tegretol.

If there are others here on Vimpat, I'd like to hear about your experiences. Do you drink at all or do you avoid alcohol completely?

Thanks a lot in advance.


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Old 05-08-2018, 03:27 PM   #2
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Re: New here, would appreciate feedback and advice!

I am not on the drug you mentioned, but would like to know why your dr has you on an anticonvulsant and if you EEG and MRI are normal. You said drugs have been switched; neurologists LOVE to change drugs on people because they are out to totally control patients. Some of those drugs will make a zombi out of a person. I do not drink, but you did. I know that heavy drinking will cause seizures-I am NOT insinuating that you are a heavy drinker, but I do know some people can handle the stuff while others cannot.

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