any info please

[soupersuzy]

My consultant has suggested I try Valproate or Levetiracetam for my RLS/PLMD.

Has anybody tried either of these and had any success or otherwise?

[LotteM]

Both are medicines usually prescribed for people with epilepsy- according to a quick internet search. Have you asked your consultant why these specific meds? As they are not mentioned in the guidelines for the treatment of RLS. The most recent andcomplete ones are innthe Mayo Clinic Proceedings of 2021. But older (EU based) ones do not mention these meds either. As I am outside the UK, I cannot acces the NICE guidelines, but I am quite sure those also do not lists these meds. Thus, proper argumentation from your consultant seems important. It doesn't mean they may not help. Have you tried searching this forum to see if someone reported experience with one of these meds?

Please let us know how you proceed; all experiences are highly valued.

[soupersuzy in reply to LotteM]

Many thanks for your comments. I seem to be a somewhat complex case including myoclonus as well as RLS and PLMD. Have been seeing the consultant neurologist for a couple of years now, had a sleep study and tried meds such as Clonazepam and Pregabalin, but so far nothing has helped. I always refer to my condition as RLS as that seems to be the most recognisable term. I've had this for the last 20 years and it's got progressively worse over that time. It's every night to some degree and after racking my brains can see no rhyme or reason why. However reading the posts on here I'm lucky compared to some poor sufferers. Have not come across either of these meds in any post on here which was why I wondered if anyone had been given them to try. In UK doctors seem to be very reluctant to prescribe opioids but maybe I should be asking to go that route. Thanks again.

[Joolsg in reply to soupersuzy]

I haven't heard of anyone on these epilepsy drugs for RLS. They do seem to have more side effects than pregabalinband gabapentin.However, if pregabalin isn't covering your RLS, it is now refractory, and low dose opioids would be the next usual step. Did your consultant mention a low dose opioid?

Is your serum ferritin above 100? Raising ferritin may improve the RLS.

[soupersuzy in reply to Joolsg]

Thanks Joolsg - the problem I had with Pregabalin was mostly the side effects. Vision and balance in particular. Opioid has been vaguely mentioned together with CPAC (think that's what it's called) as my sleep study showed mild sleep apnoea. Will discuss all at my next appointment. My ferritin levels are ok.

[Joolsg in reply to soupersuzy]

CPAP is a breathing machine that helps breathing while asleep. Many people find their RLS really settles once they use a CPAP machine.

Hopefully the new drugs will control the RLS without side effects. Vision.anf balance are common side effects on pregabalin and gabapentin but do tend to settle down after 3 months.

[soupersuzy in reply to Joolsg]

Well I was a bit reluctant to have a mask on while sleeping but if it's been successful for others I will give it a try. Unfortunately my Pregabalin side effects didn't settle down, maybe these new drugs will help.

[SueJohnson in reply to soupersuzy]

Did you ever try gabapentin as I suggested?

[soupersuzy in reply to SueJohnson]

No I never did as I expected to also have side effects with it. Maybe not the same ones but still side effects which I thought would probably be bad. I do seem to be very sensitive to them even with my other meds but some are worse than others. Problem with these strong meds is it takes so long to come off them.

[SueJohnson in reply to soupersuzy]

You could try a low dose of gabapentin - 100 mg where the normal starting dose is 300 mg. Give it say a month to see if you have side effects that don't go away and you can't live with. If so at such a low dose you can just stop taking it without any withdrawal effects. Nothing ventured, nothing gained.

However you were on pregabalin at 250 mg. and had bad side effects. Did it help? If not gabapentin probably won't even if it doesn't have the side effects you had on pregabalin.

[soupersuzy in reply to SueJohnson]

Thanks Sue, can't say Pregabalin did help even at 250mg so not very confident Gabapentin would be any better, they're very similar aren't they?

[SueJohnson in reply to soupersuzy]

Yes they are basically the same except some people find that the side effects that bother them on one don't bother them on the other but you are probably right that if 250 mg didn't help gabapentin is not likely to. So you can forget my suggestion.

[SueJohnson]

Valproate (Valproic acid) is know to help RLS. See movementdisorders.onlinelib... However it should not be used long term because it can lead to osteoporosis.

Levetiracetam can also help RLS.

Also see pubmed.ncbi.nlm.nih.gov/368... which mentions both of them.

[soupersuzy in reply to SueJohnson]

Thank you Sue I will look at both of those links.