My Long RLS + PLMD Story (so far) Half of a Victory

[Wordsmith77]

I've dealt with RLS since I was a teenager. It grew increasingly worse as I aged. (I just turned 63). I also suspected that my legs were twitching and moving around a lot in my sleep. Eventually I learned there was a clinical name for that, too: PLMD (Periodic Limb Movement Disorder) that frequently, but not always appears in people with RLS.

A trip to a neurology-sleep clinic a couple of years ago confirmed the diagnosis of "severe" PLMD. It was NOT surprising because I'd been wearing an OURA ring when sleeping which shows you on a graph each morning how much I had moving around at night.

Every morning the ring would indicate that it had taken me two or three hours to fall asleep, even though I had actually fallen asleep quite quickly. Why? Because I was moving so much. The ring's AI simply couldn't believe that anyone moving that much could possibly be asleep. But I was. Just NOT deep sleep or REM sleep--the kinds of sleep necessary to feel truly rested. So as a result I invariably woke up after 8.5 hours of hard sleep feeling like I'd been hit by a truck.

After the official diagnosis of PLMD and RLS, the clinic prescribed pramipexole. (I wish I had discovered the information on this site before I started on that drug!)

I started off on half a .5mg tab. It worked like a miracle drug on the RLS . . . until it didn't . . . about two months in. So I upped the dose to a full tab. Which worked like a miracle on the RLS . . . until it didn't . . . about six months later . . . then all my RLS symptoms got worse. Much worse. (By the way, pramipexole never touched the PLMD at all, it remained unchanged.

The clinic's recommendation was that I up the dosage again, but by that time I'd read too many threads on this site. I knew I was experiencing "augmentation" and that continuing to up the dose was just going to make it more hellish to get off the drug down the road when it stopped working again.

So instead, I requested gabapentin. The clinic suggested I take it WITH the pramipexole. But instead I used the gabapentin as aid to weaning myself off of the pramipexole. After reading lots of horror stories here, I was pleasantly surprised to find that getting off of pram wasn't terrible with gabapentin, but then I'd only been on it for a little over a year. I know some people here didn't experience augmentation until they'd been on higher doses of the drug for 8 or 10 years.

Since then, I've been on 600mg (2x300mg) of gabapentin only. My evening RLS symptoms have returned to almost zero. Which is a HUGE quality of life upgrade. But . . .

My PLMD remains unchanged and therefore deep sleep is hard to come by. I have "quantity" sleep, just not "quality" sleep.

I'm still looking for the magic bullet that will reduce or eliminate the PLMD symptoms. I'll let everyone here know if I find it!

I'm also considering switching from gabapentin to gabapentin enacarbil. I would welcome any wisdom or insight about this from the collective mind here.

DH

[SueJohnson]

There is no real reason to switch to gabapentin enacarbil as you don't have RLS nor PLMD during the day. For your PLMD I would suggest increasing your gabapentin. It is treated the same way as RLS. 600 mg of gabapentin is a very low dose so it is no wonder it is not working. According to the Mayo Clinic Updated Algorithm on RLS: "Most patients require 1200 to 1800 mg of gabapentin daily." Ask your doctor for 100 mg capsules and increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption of gabapentin.

[Wordsmith77 in reply to SueJohnson]

Thank you. Very helpful!

[HipHop1972]

Hi Wordsmith 77. Sorry to read about your journey but. Pleased that your RLS treatment is working. I also suffer from leg spasms in bed but put it down to severe RLS as they jump while standing up during really bad bouts. It really is very disruptive for one’s wife so much so that I am now sleeping in another room and gave done for years. People may think that RLS only effects the person who has the condition. It doesn’t, it affects the whole family. My parents were married for 70 years and both died in 2015 but apart from during the war they always slept together, not doing so does nothing to nurture a relationship on the contrary it does the opposite, we have been married now for 50 years but miss out on so much which is why I said on a previous post that RLS is a pernicious condition. So Wordsmith77 I do sincerely hope you can find a medication that will resolve your PLMD

Best wishes

[Jelbea in reply to HipHop1972]

This might not help much but I also had to sleep in another room because of severe restless legs. I hated doing this. My husband was a good sleeper and always assured me that I did not disturb him but as long as we shared a bed I was always trying not to move and as all of us RLSers know that is impossible. I then decided that it would be better to at least be in the room with my husband so we invested in twin beds and that was a great decision. I could wriggle all I wanted to and not feel I was disturbing my sleeping husband, and when we were both awake at least we could talk. Unfortunately he died suddenly five years ago but I will always be glad that we were together.

[HipHop1972 in reply to Jelbea]

hello Jelbia. Thank you for your reply and I agree that would be a very sensible solution but a little difficult in the current financial climate but will talk it through with my wife and see what we can do. I was really saddened to hear you lost your husband suddenly but I’m so very pleased you were able to share a room again. Best wishes and thank you for thinking about my plight

[Wordsmith77 in reply to HipHop1972]

A while back my wife and I switched to two xl twin matresses butted together. That has gone a long away toward keeping my twitching and jerking from disrupting my wife's sleep.

[Hidden]

It sounds like you're just not taking enough gabapentin.

Ideally the medication should stop the periodic limb movements at night.

How do you know that your periodic limb movements remain unchanged? Is it via the Oura ring?

The best measure of course is whether you feel refreshed the next day, and you're clearly not.

I too have PLMD. Interestingly, I was taking pramipexole some years ago. The first sleep study that i had while on pramipexole showed that i had nil leg movements (down from 67/hour). I felt refreshed at that point.

Still on pramipexole, I had a second sleep study approx 12 months later because i was feeling really tired in the daytime (not sleepy tired, more sleep deprived tired). Interestingly, that sleep study also showed barely any limb movements yet i was feeling just the same as i did before i started medication.

I now take pregabalin 300mg and have done for approx 8 years. I can't recall if i've had a sleep study while on that but do know that upon waking, i feel as though i've had a decent sleep.

My young son takes gabapentin 300mg for his PLMD. I notice that he still has limb movements during the night on that dose (but choose medication dose based on his daytime functioning and mood).

[Wordsmith77 in reply to Hidden]

Thanks! Yes, I have about 5 years of data with the ring that gives me a movement graph every morning. Last night's graph looks like this (below). I wasn't really awake those first few hours. The app just can't imagine that someone moving that much might actually be asleep! haha

Screen cap of part of my OURA ring report. The graph of vertical lines is movement.

[RLSofManyYears]

Hi, Yes Pramipexole (and Ropinirole) are not good. However I have had to revert to using it occasionally in order to get some of that blessed sleep. I'm on the gabapentin equivalent (300mg Pregabalin) and 400ugm Temgesic and basically I'm awake half the night. I too have a major problem in getting to sleep due to my legs jerking (PLMD). I was given Zopiclone to help me sleep but I only get 14 low dose tablets a time from the doctor. I am now using the Pramipexole for 3-4 nights, when I really need my sleep, and then stopping it. I'm actually in an airport lounge right now and will be taking the Pramipexole for the next 4 nights as I'm away for a conference.

Re the OURA ring, I wear a Fitbit Charge 4 which monitors my sleep. I think that it also has the same problem in working out what is sleep as I think it under-reports my sleep. However it does indicate that I'm typically getting just 3-4 hours of sleep per night. I'm very fortunate that I have things I can do in the middle of the night but there are many for whom this is a total nightmare.

I'm glad you've found this forum and listened to the advice. Sue's advice is always good👍

[TeddiJ in reply to RLSofManyYears]

Hi. I know what you mean: I went back to PRAM and ROP occasionally earlier this year when I was desperate. But I wanted to fully and completely stay off of them to see if my receptors could heal and improve somehow. Red vein Kratom stops both rls and plmd in minutes; you might consider it as a backup instead of the PRAM. Have a good trip!

[RLSofManyYears in reply to TeddiJ]

Hmm, I've just done a quick search on Red Vein Kratom and the Mayo Clinic says it is unsafe and ineffective: mayoclinic.org/healthy-life... and so I think I'll give it a miss. Thanks anyway

[TeddiJ in reply to RLSofManyYears]

Nobody in the medical profession likes it-of course they don't, as it is a huge threat. It is far less dangerous than those DA's they hand out like candy-I would bet.

It is EXTREMELY effective or I would not be relying on it, and after heavy DA use, to boot.

There are plenty of people on this forum who have used it for years.

My doctor said just to make sure it comes from a good company and one that uses 3rd party testing.