Hey guys need some help!

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Luckylukas

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Hey everyone
It's been nearly 12 months now since I've slept without the aid of sleeping pills, my trouble started when I changed from valpro to tegretol after having three grand mals in 6months. These three where from the result of lack of sleep and alcohol, which was previously never a major factor for my epilepsy. After talking to my neurologist we decided to swap to tegretol, as valpro seemed not to be working as well anymore..and cut out big nights. This is when I started getting bad myoclonic jerks (mainly when going to sleep and morning) neurologist believed to be bad reaction to neurontin and diagnosed me with jme, then swapped me too keppra and lamictal as well as prescribing imovane to help with trouble sleeping, which had just started. During the time of weening off tegretol and slowly onto the news drugs, I had two more grandmals, one of which was while driving home late one night after school. That was July last year, very glad to put 2011 behind me. Keppra and lamictal have worked well to prevent grand mals but insomnia has grown worse and sleep deprivation seems to be my worst trigger, especially for myoclonic jerks. The thing I'm still not too sure about is whether it's the sleeping tablet that i take every night that controls the jerks/seizures or the meds themselves. I take them every night because i cant risk the bad night sleep.*
I've been to sleep doctors had overnight study and still in process of trying other remedies which are less addictive, but it's a nasty cycle and I'm just trying to find some balance right now..
Be great to hear from anyone with similar experiences or any suggestions :)
 
Hello Luckylukas,

A big warm welcome :)

Could you consider going back to valpro?

Have u tried getting up real early to try tire yourself out, and I mean a strict up at the likes 7:00AM for many weeks solid? My Son has E, and was suffering insufferable insomnia (he also student), he started new sleep regime and gets up early every day, and what u knows insomnia no more and sleeping good, I say with glee....insomnia now down to a min (only when mega stressed, he takes valpro)
 
Imovane can cause trembling/shaking of fingers, hands, arms, feet, or legs. So it might (or might not) be contributing to the jerks. Another reason to find another sleep remedy if possible.

The Lamictal can cause very poor sleep, perhaps that may be making your insomnia worse. If you have any flexibility with it, you might try taking it earlier in the evening (if you take an evening dose). You could also try taking a tiny amount of melatonin -- it helps some people with sleep. But proceed with caution if you do, a little goes a long way, and taking too high a dose can cause problems. Another suggestion: A small magnesium supplement in the evening -- it can help prevent some kinds of muscle twitching.
 
Thanks for the replies :)

I'd like to go back to valpro Chaz I'd never had insomnia or very rarely myoclonic jerks well taking 900mg every day previously. But when mentioned this to neuro he suggested staying on what seems to be working ATM, at least for a while after hard last year. Great news to hear your sons innsomnias gone, would awesome relief.
ATM I get up 7am every morn and go to sleep round 10ish, so might try getting up little earlier.
Nakamova i found magnesium is very helpfull for muscle cramps and restlessness. Iv tried melentonin as well but didn't find helped much. The neuro also suggested lamictal could contribute to insomnia and did try taking lower doses and at different times but didn't seem to work. Would like to try again at some stage just to double check.
I work 10hr days, study as well as gym five days week and even then and when resting on wknd don't seem to be tired enough to go to sleep, and if I do without imovane it's very very light with random dreams lol.
 
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