I have severe PLMD. During my last sleep study, at which I only slept 4.5hrs, I had 512 recorded limb movements with 97 resulting in an arousal, giving me a PLM Index score of 108, with anything over 25 considered severe.
Thankfully, I only rarely feel a little of the urge to move my legs when awake, usually just before going to sleep. I don't have any of the other RLS problems that many on here have like pain, daytime jumpiness, etc. The only real problem is that I start jumping and jerking soon after falling asleep and most nights it ebbs and flows all night long, resulting in daytime fatigue and brain fog. It also at times is quite disturbing to my wife's sleep.
I was hopeful that brain iron was my problem and had the tests done that are recommended in the Mayo Clinic document, but my results were all well in the normal range, with ferritin actually high at 336ng/ml.
My doctor said I am not a candidate for iron therapy based on those numbers and has offered to start me on a low dose of Gabapentin, but said he usually only suggests that for people suffering with the typical RLS symptoms.
My question is will Gabapentin do anything for PLMD without RLS. I'm reluctant to start it and possibly keep increasing the dose if it mainly is for the pain and discomfort relief of RLS which I don't, at least so far experience.
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The same medications are used to treat both RLS and PLMD. Like you I have severe PLMD with mild, occasional RLS. I take pregabalin (same class of drug as gabapentin) and have done for a number of years. It helps me get reasonably restorative sleep in the main.
75mg is a very low dose. The mean effective dose for RLS is around 312mg. I take 300mg nightly. I take it around 7.30pm but don't sleep for another 4 or so hours as my body is well used to it. Other people find that it induces sleep.
I’ve had solo PLMD for 8 years now. Unmedicated it’s severe, much in the manner of yours, although I continue to experience mine after it’s woken me up. Although I’ve now built up tolerance to Gabapentin, it’s served me well twice, never entirely eliminating the PLMs, but diminishing them to a manageable level. My last dosage level was 1800 mg, reached after a long process of titration. Pregabalin at 250 mg was similarly effective for just over a year.
But for what it’s worth the only medication that has actually eliminated my PLMs completely is Buprenorphine in sublingual tablet form. I’m currently on 0.6 mg a night and just short of 4 months of freedom from PLMD. At some point in the near or more distant future I expect I shall need to titrate. But at 0.8 I shall remain within the MayoClinic dosage tolerance.
However, given the battles intrinsic to attempts to persuade recalcitrant GPs to prescribe what is an off-licence med for RLS/PLMD, I would recommend Gabapentin, which is now the go-to med for more enlightened GPs responding to the above paired conditions. The very best of luck. Keep us posted.
Thanks so much for your reply. From reading thru your previous posts, it sounds like you have really been thru the wringer trying to deal with PLMS / PLMA. I'm sorry it's been such a struggle for you.
Without an outright cure, it seems all that the many drugs and supplements sufferer's are taking do is partially relieve the symptoms for a while, until they don't and you have to try something else. It sounds like you have been this route and tried most.
I seem to be overly reluctant/ cautious to take powerful prescription drugs so far, possibly because I am not suffering any daytime symptoms yet other than fatigue. Another reason may be that I saw my mother's struggle with a toxic soup of handfuls of drugs for RLS and depression before she died back in the 90's.
I've been pretty healthy and fit most of my life and usually just struggled thru any minor health problems or surgery recoveries with OTC meds, but nothing simple like that has helped with PLMD.
Good luck with your treatment. I hope the Buprenorphine continues to work for you.
I find gabapentin has less side effects than pregabalin, I didn't like how pregabalin made me feel, very down and dark and didn't help with sleep, but gabapentin does, it's just finding the right dose that suits or the right medication, gabapentin may not suit u but pregabalin could or vice versa, I take 900mg gabapentin in 3 doses with 60mg codeine and it helps, it doesn't rid me of my rls but helps me get 5 to 6 hrs of broken sleep which is better than nothing, it does however stop my plmd.
Strange how what works for one, doesn't work for the next. Gabapentin has stopped your PLMD but only helps with your RLS, where as in Wordsmith77's post above, it had just the opposite effect.
Like everyone else suffering from this ailment, I sure wish there was a clear understanding of the root cause, so that possibly a cure could be found.
Thanks for the suggestion. If the low dose Gabapentin doesn't help, I'll talk to my doctor about Horizant. I'm also going to look into eliminating late day sugar and see if that may help some.
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