psychedelics

dustmansam

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Has anybody tried using psychedelics to help with their epilepsy. Currently on three meds and the vns and trying to think outside the box. Although, even thinking is a chore these days and the days are slipping by.
 

Nakamova

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I think that psychedelic compounds rarely induce epileptic seizures, but they also don't do anything to help them. Does your neuro have any ideas about alternatives like CBD or neurofeedback?
 

dustmansam

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I gave the CBD a solid try with no noticeable help. I have stopped them now and moved on to Felbatol and Clobazam. I am a month seizure free, but I am drugged beyond belief. I feel post-ictal all the time. I was on the clobazam before the felbatol and it was not helping and I am very slowly tapering off of it. The waiting is just tough. I do not know much about neurofeedback. Who would I contact about such things.
 

valeriedl

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How long have you been taking the Felbatol and Clobazam? If you've just started it might take a while, maybe a month or more, before you're body gets used to the med and the side effects could stop or they won't be as bad. If you can't handle the side effects then you might want talk to your dr about changing to something else. I've had to do this quite a few times.

Is your neuro telling you how to taper off the meds or are you doing it on your own? You should always have your neuro tell you how you should do it.
 

dustmansam

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I have been on the onfi for awhile and no positive results and the felbatol for about two months. I also have a vns. Hopefully, getting the onfi out of my system will help with feeling drugged all the time, as the felbatol seems to be working. And yes, I am doing it with neuro guidance.
 

valeriedl

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I've had epilepsy since 2003 when I was 27. I got a VNS in 2007. I'd been on the same meds since then, different strengths and voltages on the VNS though. Two years ago I had to be taken off of one of the meds, Tegretol which is one you aren't taking though, for another medical condition. I was still having seizures. A little less and they weren't as bad and some of the side effects went away.

Waiting does suck but I hope it turns out good in the end!
 
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