Hi Restless" Leggers", New here and H... - Restless Legs Syn...

Restless Legs Syndrome

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Hi Restless" Leggers", New here and Happy to have found you.!

rukidding profile image

I have dealt with RLS for many years. It always seemed to be an annoyance and I found ways to deal with it without medication, as many of you have.

Three years ago I was prescribed Klonopin for RLS by my PC doctor. I took one a night,.5mg. for 2 years. Into my second year I was losing my balance, forgetting everything, falling, having car accidents, my cognitive abilities were gone. I thought I had Dementia at 63 and went to every doctor to test for it . Everything came back negative and then I realized it was the Klonopin and I had reached tolerance . So much for Rls and Klonopin....and my , eh, doctor! I was now an old lady and addicted drug user. Surprise!!! Who knew?

After 1 month of detoxing gradually to get this out of my system (and this was a month of a hellish opioid withdrawal, I was left with many side effects and very bad RLS. I had begun having severe neck muscle/ nerve pain, that I felt was from no longertaking the Klonopin and I was so stressed and anxious I could not relax , even when sleeping.

Fast forward : Several weeks ago I had a sleep study done and it was found that I 440 limb twitches in a 5 hour sleep period and 20 during a preliminary waking period of 20 minutes. Never felt it but needless to say I was not getting any restorative sleep and was waking up with severe cranial pain.

DoctorI diagnosed me with severe RLS and placed me on Horizant--new drug similar to Gabapentin. Started on 300mg for 10 days, then 600 for 10days --not sure it was working --still have electrical twitches --but do not see My Doctor for 20 more days. Picked up and additional supply of samples for the remaining 20 days.

QUESTION: Who takes Horizant and what don't I know about it? Has it worked for you?

How long should it take to work? What are your side effects.

Appreciate some guidance if possible because I still have the neck pain and limb twitches . I can deal with it if I know it takes time to kick in, if not I will need to let my Doctor try something else. Anyone tried CBD for this?

Thank you so much for your forum. It helps to know others are struggling with this malady. Lets hope we can find a solution and end the "Squirrely" nuisance.

R.U.K.

3 Replies

Hi RUK and welcome. Sorry to hear about the hard time you have had. Horizont is from the same family as pregabalin and gabapentin and typically they can take a while to kick in - up to 4-6 weeks though they do work from day one for some. There are others for whom they never work particularly well but I notice that often these are people who have augmented on a dopamine agonist and luckily you are not in that category (your trials with klonopin are commensurate but least maybe will not have made you resistant to horizant). I would definitely give Horizant another week or two. I hope it works out for you. Do keep posting. It is always great to read of the experiences of others.

Thanks Involuntary dancer. Good to know.

I started Horizant 2.5 months ago. I'd gone off 10 years of Pramipexole (Mirapex) by tapering by 1/4 tablet (each tab =0.25 mg and my usual dosage was 0.5mg) over 6 weeks while staying on and increasing Gabapentin (up too 600mg while doing the taper from my more usual 200mg). Withdrawal was helped by my nightly toking of a vape cartridge of a 50/50 mix of thc/cbd. Oh, and 5 nights of taking 1/4 to 1/2 percocet left over from a recent surgery. One week after finishing Pramipexole I went on Horizant in lieu of the Gabapentin. They can't be taken together.

I absolutely LOVE the Horizant, other than the pain of remembering to take it sometime between 5 and 6 PM with food (I eat dinner later than that). But when I do miss the Horizant, around 11pm I take 400 mg of Gabapentin to tide me over until my 5pm dose of Horizant the next day. That has worked well, tho the nights on Gabapentin are a bit more fiddly legged than the nights on Horizant.

I think my withdrawal from Pramipexole and successful transition to only Horizant was helped by my having bern on Gabapentin during the withdrawal period....something my doc had thought would help. I'd been on both Gabapentin and Pramipexole for 10+ years, having been on Requip for 10 years previously, and before that on clonazepam. None of those seem to work as well as Horizant.

Good luck. It may take a few weeks on Horizant for it to fully work if you'd not bern on Gabapentin before.

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