The cold turkey thing worked - Restless Legs Syn...

Restless Legs Syndrome

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The cold turkey thing worked

Ballybofey26 profile image
11 Replies

Dear All, thanks for all the kind words, and advice when i wrote two months ago i had gone cold turkey off Pramipexol and after 10 days I still had restless legs but nothing like the electric shock type symptoms when on the meds, and I was still waking up every half an hour. I went gluten free, sugar free, cut down on diary, caffeine, increases green veg, probiotic, yoga/ stretching, walking, mag/ cal/ vit/ iron supplements + acupuncture every two to three weeks for 3 months, + group meditation on Zoom twice a week! etc etc. Here I am two months later to say that my symptoms are greatly reduced since I came off the meds and changed my lifestyle and diet. I still have RLS but I sleep at night, 1-2 hours + RLS for 2-3 hours + 3 hours sleep. Its much much better than what I had so I will hold on to it. I'm hoping that it will continue to improve but I can live with this by taking a nap during the day. I could never nap during the day before coz I had RLS every time I tried to relax. Feeling grateful!

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Ballybofey26
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11 Replies
Joolsg profile image
Joolsg

I’m so pleased the withdrawal symptoms have stopped.

It still sounds as if you could do with more sleep though.

Have you considered other meds?

If you really don’t want to try other meds, raising your serum ferritin above 250 might reduce the night time RLS.

If you do decide to try other meds, pregabalin or Gabapentin or low dose opioids can be very effective.

I wish you well & hope your sleep improves.

Jules1953 profile image
Jules1953

What dosage of Pramipexole were you taking when you went cold Turkey

Ballybofey26 profile image
Ballybofey26 in reply to Jules1953

I tablet every night

Jules1953 profile image
Jules1953 in reply to Jules1953

After a few days I realised that I could not go cold Turkey off Pramipexole. I was up to 3.00mg Pramipexole.I then very slowly weaned myself off Sifrol medication.

I spent two years weaning my self off Sifrol medication.

Ballybofey26 profile image
Ballybofey26 in reply to Jules1953

When I read on this excellent forum the risks of going cold turkey, the possible very harmful withdrawal effects, I am very grateful I did not know this when I made the decision. Cold turkey was extremely uncomfortable but I was fueled by anger at the medics for lack of care and pure determination to see this through. Bear in mind I got 10 sessions of acupuncture to help me ( physically, emotionally and mentally) and prayed constantly ( practically on my knees which is not my normal) for spiritual support. To all my fellow RLS sufferers, don't give up! 🥰

This is really great that you have gained such improvement from withdrawing from the pramipexole.

I have to say however that I'm concerned that anybody reading your post may be left with the impression that's it's OK to stop pramipexole cold turkey. I'm writing this then for their sake.

The British National Formulary on pramipexole states "Antiparkinsonian drug therapy should never be stopped abruptly as this carries a small risk of neuroleptic malignant syndrome."

And neuroleptic malignant syndrome is potentially fatal.

Many people also suffer very severe withdrawal effects including DAWS (Dopamine Agonist Withdrawal Syndrome) which can last for months and some people suffer mental health problems. It's therefore recommended to wean off the drug slowly.

You have been very lucky!

I admire your self discipline in changing your lifestyle significantly and seem to have had some success from this.

I agree with what Jools says.

Madlegs1 profile image
Madlegs1

Ye all have to realise that Donegal people are a breed apart. And tough!🤠

Ballybofey26 profile image
Ballybofey26 in reply to Madlegs1

Ha! Gas. You are right there. This Donegal gal is now living in Sweden!

Ballybofey26 profile image
Ballybofey26

Its three months now since i came off Pramipexole - I have mild symptoms . I did up my Vit D and Magnesium to maxim dosage one month ago. I sleep at night and have done so for one month at stretches of 2 and 3 hours, getting most nights 7 or 8 hours sleep. I have no daytime symptoms at all not since a month ago. My plan is to keep on keeping on, coz this is working.

puzzler1 profile image
puzzler1 in reply to Ballybofey26

Hi Bally,Well, that's encouraging news. My wife Mrs P is going through prami withdrawal at the moment and it's hellish. Like you, she says the only thing that keeps her on track is the anger she has for the meds and doctors that have put her in this position. She was on 6 x .125/.088 tablets and slowly reduced over a year, but the last couple of months have been the worst. It's now been 4 weeks since her last prami. Things seems to be improving with very little RLS in her arms and the symptoms during the day are much less. But the nights are still grim with her up between 4 - 6 times pacing to get relief.

I just wondered what your dose of prami was and whether this progress was similar to yours. Has Mrs P got another couple of months to go??

Thanks and best wishes

Madlegs1 profile image
Madlegs1

Fantastic news. Slån leat.

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