is there anyone out there with what I have?

[pianoplayerPLMD]

I am so pleased I've found this support group, I've needed such a thing for ages. I have something closely related to RLS, PERIODIC LIMB MOVEMENT DISORDER. I take Pramipexole which works in that my nights are pretty good, but I have what I have self-diagnosed as AUGMENTATION, which means my afternoons and evenings are pretty rubbish, and I can't relax at all. I'd love to find out if anyone else suffers like me, and if there are any tips for making life a bit more bearable?

[SueJohnson]

Unfortunately many people have suffered from augmentation. And the only solution is to come off the pramipexole. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a... Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your transferrin saturation is OK, then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps with its absorption. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. To come off pramipexole, reduce by .125 mg (which is what is in a .088 mg tablet if that is what you take) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. On the gabapentin, beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that 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. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin.

[pianoplayerPLMD in reply to SueJohnson]

Thank you very much, Sue, for this great reply. I have been thinking I should come off the Pramipexole and your guidance for doing so is very helpful indeed. Not sure about Gabapentin though, why would you recommend it? I took it 2 years ago, and it didn't really make any difference, can't remember the dose......(My iron levels are good my GP says).

[SueJohnson in reply to pianoplayerPLMD]

Gabapentin is now the first line treatment for RLS which is why I recommended it. You probably didn't take enough of it if it didn't make any difference or you may have taken enough but not in divided doses or maybe you were taking it at the same time as pramipexole. It's certainly worth a try again.

[Amrob in reply to SueJohnson]

Sue, alpha delta ligands are the first line treatment for RLS. This includes gabapentin AND pregabalin. It appears you have a preference for gabapentin, but its important to give complete and accurate information.

[SueJohnson in reply to Amrob]

In this case I was replying to the fact she had already taken gabapentin and said it didn't help. I prefer gabapentin for someone starting to take it because they can increase it in smaller doses to find the dose that works for them and then can switch to Lyrica if they want. When I give my usual spiel and give starting amounts and how much to increase by and effective amounts it would be confusing to have to give that for both gabapentin and lyrica, and when they talk to their doctor, the doctor probably tells them of both possibilities or when they check the Mayo Clinic article I refer them to.

[SueJohnson in reply to pianoplayerPLMD]

Do you know what your ferritin is? Doctors will tell you it is OK but what is normal for others is not normal for those of us with RLS.

[pianoplayerPLMD in reply to SueJohnson]

yes it's 97 as of July 2022

[Gerry2020]

I just read a article about Pycnogenol helping with RLS

[Moonwalker1967]

me too... following

[dickJones]

Hi Pianoplayer. I have been battling PLMD for 11 years so I know all about your nights in respect of sequences of muscular convulsions and lost sleep. Mine wake me up and continue until I walk them off, these episodes lasting between 20 and 30 minutes, sometimes more.

SueJohnson has given you all the advice you need. The medications and treatment regimes for RLS are precisely those that we need for PLMD. I've been on Gabapentin twice and Pregabalin once, each regime tackling the PLM s successfully over a period of about a year before running out of steam. I'm currently using Buprenorphine patches, which administer the low dosage opiate over a 7 day period (although in my case the effective duration is more like 4/5 days).

Good luck with your treatment. If you're fortunate, your faceless GP on the phone will do their homework and prescribe wisely. If you get a clock-watcher who's anxious to get through their case load by surgery closing time, then you'll have to fight your corner. You won't find a better source of information and advice than this social network so use it to build up your knowledge of what you need in terms of meds.

[pianoplayerPLMD in reply to dickJones]

Hi, Dick, I may have repeated this somewhere else, sorry if that's the case.........

By the way I notice that you make no mention of any augmentation, I'm curious to know if you have ever suffered from it with all the meds you've taken?

I noticed your reply this week to my post, thank you. It was your post of 6 years ago about having PLMD whilst awake which rang a clanging bell for me and made me think about joining this support group. I'm so glad I did, as I am learning LOTS about it, there seems to be a dearth of info generally, and GPs seem to know nothing. I'm in the UK by the way.

It seems very odd to me that there is not really a consensus on what PLMD is....and especially that PLMD is nearly always defined as periodic limb movements in sleep. And especially that the person is not aware of the movements though they can cause the person to wake. I never see the definition that I experienced when I first had it, which is that I ONLY had them when awake, and they STOPPED me from going to sleep.

[dickJones in reply to pianoplayerPLMD]

Bad augmentation with Ropinirole. Dopamine agonists - never again!

Waking PLMD is referred to as PLMW. But you're right - there's no detailed acknowledgement of the condition as a fully waking phenomenon. In a sense, it's not a problem. GPs are so unversed in either RLS or PLMD so if you told them that PLMs provided you with the power of flight they'd be none the wiser!

I'm currently using Buprenorphine patches - low dosage opiates stated to work for 7 days. I'm lucky if I get 4 nights of REM sleep and they barely touch the PLMS. I'm now battling my surgery for extra patches. No joy to date. Trying to tackle PLMD when you get a different doctor voice each time makes progress two steps forward and one back. All power to this chat space!

[SueJohnson in reply to pianoplayerPLMD]

There are 3 abbreviations used: PLMD can apply to while asleep or not. PLMS applies to just in sleep but as you noticed, most people just use PLMD. And PLM is just Periodic Limb Movements but is rarely used.

[Amrob in reply to SueJohnson]

PLMD is used to describe the disorder i.e Periodic Limb Movement Disorder.

"Periodic limb movements" describe what is occurring. Anyone can have periodic limb movements, even if they don't have PLMD.

When the periodic limb movements interrupt sleep and impair functioning, it is classified as a disorder i.e. PLMD.

The terms PLMS and PLMW are used in a technical context to describe when the movement occurs, i.e.:

PLMS is periodic limb movements of sleep.

PLMW is periodic limb movements of wake.

[Amrob in reply to pianoplayerPLMD]

Yes, even some sleep specialists say there is no such thing as periodic limb movements when awake however that is not correct.

I have seen occasional references to this phenomenon in the literature but it's not adequately recognised.

Even my son's recent sleep study lab report stated that he had periodic limb movements while awake. And i myself experience them while awake (also when asleep).

[agapepilgrim]

pianoplayerPLMD I was advised by the RT at the Sleep Clinic to try a weighted blanket for my PLMD, and Delta 8 CBD dummies. I bought both. The weighted blanket (I believe it is 15 lbs, based on my weight of 140) has a cotton cover that is washable and it contains those tiny beads like in a neck cushion. Totally stops my movements. The CBD gummies help stop my mind that refuses to shut down without a very strong sleeping pill (and those cross the Blood Brain Barrier causing more lesions). The CBD I use is the WYLD brand which contains to dyes or chemicals or preservatives. I take the WYLD elderberry CBD/CBN combo gummies. Ratio is 25:5. Hope this helps.

[conger]

Like you I have PLMD while awake. I am 76 years old and have had RLS for 35 years or so. I have taken most of the medications mentioned here including several years on methadone which required increasing doses and I finally had to withdraw from it as it was severely interfering with my life. I vowed to never take an opiate again. I am in the process of withdrawing from Pramipexole and am hoping to be able to complete the withdrawal without breaking that vow.

I have had PLMD for several years but now it is a major problem as I jerk uncontrollably every few seconds every evening. I am exhausted when it is over. I cannot nap during the day due to PLMD.

Most of the recommendations I have read on here, such as the excellent ones from Sue Johnson and others, say to start taking gabapentin in the last few weeks of withdrawal from pramipexole. My sleep specialist, whom I have been seeing for several years, put me on 300 mg of gabapentin about two years ago in an attempt, I believe, to bolster the pramipexole. I believe I was in augmentation at that time although he did not recommend withdrawing from the pramipexole then. I am now taking 800 mg of gabapentin at 3:00 pm along with 0.125 mg of pramipexole and again at 8:00 pm with .25 mg of pramipexole. I have reduced my pramipexole from .5mg two times a day down to the present dose of 0.375 mg total per day. I have an appointment with a new sleep specialist in November and hope to have completed my withdrawal by then.

As I said earlier, at this point the PLMD is the worst part. Generally I am able to get some sleep as I take Lunesta and I believe the gabapentin helps me sleep. The first couple of nights after my last reduction of pramipexole I apparently jerked all night long. I did get some sleep but my poor husband got very little due to my jerking. I am about ready to take another reduction of prami (planning to drop the .125 dose in the afternoon) and will likely sleep in a different bed so my husband can get some sleep even if I don't.

I wish I could give you tips on making it more bearable but I really can't. Others on this forum have given excellent suggestions such as walking and warm baths which seem to help for the time that you are doing them. My problem is that by that time of the day I am often to tired to walk enough to help and as soon as I get out of the bath, the symptoms come right back.

Just know that you are not alone. I feel your pain and suffering and wish you relief from it.