So it seems. PLMD: New member. Looks... - Restless Legs Syn...

Restless Legs Syndrome

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So it seems. PLMD

Spurdog1
Spurdog1

New member. Looks like i have PLMD, however we both put it down to a stressful job. Now i'm retired it hasn't gone away. It's making me a little nervous "what is to come". Have had some violent Nightmares, which results in me kicking out. The wife is of course frightened, so I'm evicted to spare room.

Blood test results due tomorrow. (Iron deficiency). Started Pramiprexole, Rhus tox in reserve, but not sure if it will specifically help PLMD (as opposed to RLS, which i gather it helps sometimes)

18 Replies
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Sorry to hear of your PLMD. My experience of the condition is that it can be helped by changes to life style. Avoiding caffeine and avoiding alcohol before bed. In my case I have also cut out bread , minimized sugar intake , (depressingly) cut out Chocolate and ice cream.

By cutting out certain foods/ drinks you can judge the PLMD impact they have and if none, them you can add them back.

I have also discovered that keeping cool at night (even in winter) helps. The Pramipexole you have started to take is a dopamine agonist and the issue to try and avoid is augmentation. There is plenty of information about dopamine agonist medication and the 'hell of' augmentation . A problem can be knowing the difference between whether the PLMD symptoms are getting worse or you are in augmentation. I would rather suffer the symptoms of PLMD and RLS than ever experience dopamine augmentation ever again!

Must add that weight loss through being walked regularly by my 2 labs and Cavalier King Charles spaniel, keeping to my reduced weight has definitely helped. The incidents of thrashing around and kicking out have reduced in frequency and are not so violent . For me it's become a matter of managing the PLMD and RLS by life style/ diet changes, regular exercise plus medication, and I now have a much better life.

Spurdog1
Spurdog1 in reply to Doversoul

Thanks Doversoul for your kind info, and so prompt.

I tend to have tea, (and coffee once a day). I like a pint on a sunday lunch, not at night. I have cut out food (except maybe a biscuit within 4 hours of bed). No chocolate, though i like a magnum lolly in the summer (who doesnt). I am now getting regular exercise my weight is a bit too much, possibly due to lockdown/shielding. I seem to be on the right path.

😃

Eryl
Eryl in reply to Doversoul

I also control rls purely with diet and somewhat with exercise. I avoid ice cream altogether but drink quite a lot of coffee. I can have one or two squares of Lindt 85% chocolate daily. I eat no bread, cakes or biscuits but do eat a pasite once or twice a week. I haven't drunk alcohol since last Christmas. I have a bmi of 20 to 21. I very rarely suffer from rls on no medication at all.

Pregabalin helps my PLMD. Good luck .

Did your GP explain on detail about Impulse Control Disorder and the risk and rate of Augmentation on pramipexole? He is obliged to do that before prescribing these serious drugs.

Pramipexole is no longer first choice amongst experts- pregabalin is preferred.

Spend some time reading all you can on here about Dopamine Agonists (pramipexole and Ropinirole) & augmentation so you are forewarned.

Alternatively you could hold off starting the pramipexole and discuss further with your GP.

Raising ferritin levels resolves over half of RLS/PLMD cases without the need for heavy meds. You may be one of them.

Perhaps you could take diazepam or clonazepam until you have seen whether raising ferritin helps. It’s a lot easier to get off low dose benzodiazepines than pramipexole.

Keeping a food diary is important.You will be astonished by the sort of stuff that can set you off.

Almost any processed foods, sugars, alcohol, rising agents ( those innocent looking biscuits 🤡) and so on.

Good luck.

Hi, sorry if you have PLMD. It's interesting that you think the kicking is the result of violent nightmares.

PLMD is a neurological condition and has no association with nightmares. A lot of people with PLMD aren't even aware of it, unless a partner tells them.

If you are having PLMD and a lot of nightmares then this may be coincidental. The nightmares will have a psychological origin.

PLMD can be confirmed by undertaking a sleep study.

I agree with Jools. It appears your doctor has acted unethically. They should have informed you of the risks as well as the benefits of any treatment. They should also have told you the alternatives.

If you do take the pramipexole and it's effective then it may confirm you have PLMD, but dopamine agonists, like pramipexole are no longer recommended as a first line treatment.

You may find this link helpful. It outlines what your doctor should have discussed with you.

cks.nice.org.uk/topics/rest...

Spurdog1
Spurdog1 in reply to Manerva

Thank you all. I think the trigger was Sertraline, having been prescribed for a female bully in the office. Me getting anxious. I am most troubled and concerned for the safety of my wife, who has serious spinal pain, and finds it hard getting to sleep, only for me to wake her up with kicking,. The kicking seems to be in the first hour/two of sleep. When i go deeper it becomes less likely.

Spurdog1
Spurdog1 in reply to Spurdog1

Hi allUpdate time, its not Impulse control disorder (sorry). But the results are back. The iron and ferritin are fine, the B12 was not tested, so, good signs. But what is causing PLMD? hmmm

Joolsg
Joolsg in reply to Spurdog1

GPs tell you iron & ferritin are fine when they’re actually way too low for RLS & PLMD. Ferritin needs to be above 100 ( 15 is a normal result but way too low for us). You can start taking ferrous bisglycinate every other night ( raises levels faster than every night) .

The sertraline is a cause of RLS. Did your PLMD only start when you were put on sertraline?

All anti depressants ( except Trazodone & Wellbutrin) cause/worsen RLS and all sedating anti histamines & sleep meds like Nytol, Night Nurse.

I suggest you slowly reduce the sertraline, don’t take the pramipexole, & see if taking ferrous bisglycinate for 2/3 months helps.

In the meantime ask your GP for diazepam or clonazepam, either of which will help the PLMD & aid deep sleep.

Spurdog1
Spurdog1 in reply to Joolsg

ferritin =194

Joolsg
Joolsg in reply to Spurdog1

That’s a good level so it’ll be the Sertraline that’s the culprit.

Spurdog1
Spurdog1 in reply to Joolsg

I stopped taking sertraline in May this year😁

Manerva
Manerva in reply to Spurdog1

Sertraline is known to trigger RLS/PLMD, but isn't necessarily THE cause. It's possible that you have idiopathic RLS/PLMD which is an inherited disposition to it.

Anxiety is also a trigger.

I note you say iron and ferritin are "fine", is this what you've been told?

You need to know the exact results. If you do have RLS/PLMD then a ferritin level of less than 100ug/L is NOT fine. If it's less than 75ug/L you should try raising it by taking an oral iron supplement.

Your sleep pattern sounds a little unusual. I'm not clear if you're aware yourself that you're kicking or not. Usually the deepest sleep occurs shortly after first falling asleep and gets shallower as the night goes on, not deeper. In addition, people with PLMD often feel tired even if they think they've slept, because the limb movements can prevent deep sleep.

I wonder then if the kicking is preventing you getting to sleep.

In any event, the treatment for RLS and PLMD are more or less identical. If you've actually started takinjg the pramipexole and it's worked then this suggests you do have RLS/PLMD. If it hasn't worked then it's possible you don't.

Spurdog1
Spurdog1 in reply to Manerva

I am aware sometimes that i am kicking when I'm asleep (though, of course i am unsure if i am aware of every event). On occasion I wake up because I subconsciously am aware of the circumstance.

It will certainly help plmd as i was a nightmare with kicking out and with involuntary movements every night until starting pramipexole.

I was on premipoxle it did work for few years then I start getting augmentation I got wean off from premipoxle now I am on Rotingine patches

So, feedback update including doctor conversation. I am in the UK BTW.First I do wish to thank you all for your input, which has cleared away some fogginess. I hope that these notes will help you all out there. Some notes repeated for clarity. Please do contribute if you have had experience at all.

It was 5 years ago that I was prescribed Sertraline for anxiety (some old notes have appeared this last week - serendipity). I am now convinced that Sertraline caused the PLMD. Though I only discovered it in the last year.

Since then Mirtazipine, Which I believe caused RBD (REM behaviour disorder. The violent leg kicking) - do refer on Youtube to a lecture given from Mihaela Bazalakova from the University of Wisconsin 2016, (whilst a bit heavy going, very informative).-not sure if links are allowed on this forum.???!!

I am now on Pramiprexole (which I cannot clarify at this moment whether the violent movement has gone). I have been aware in sleep that I was doing it, but if I am in sleep I may or may not be aware.

The blood test revealed the Iron level at 194 (this is otherwise known as the "Ferritin level"). I am told they did not test the B12, but were happy to, though the B12 refers directly to the fizziness of the leg in their opinion.

I gather Pregabalin is more favoured recently, but my doctor says it is an addictive drug. So I will not be going down that route. ATM we continue down Pramiprexole until further notice.

I am employing the tactic for the moment, "If it works, don't fix it".

She has also authorised me to use Rhus Tox (Nelson's). There does seem to be positive results on RLS, though not known on PLMD. Is there anyone had experience of Rhus Tox on PLMD? Rhus Tox is a herbal/homeopathic remedy. My wife has used it with great results (though not relating to my problem).

take care, and stay safe all

Kev

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