Withdrawal Update: Situation: I am five... - Restless Legs Syn...

Restless Legs Syndrome

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Withdrawal Update

Lineker profile image
13 Replies

Situation: I am five days in without Pramipexole and I haven’t managed the situation very well.

I am getting very little sleep because I have only been taking 3 x 200mgs Gabapentin.

I only have 50 x100mgs left of Gabapentin before I switch to Pregabalin .

I have a box of Pregabalin ( 56 x 25mgs)

Can anyone suggest how I can up my dosage while I move to Pregabalin and before I get a new prescription?

I need some relief to get through the next few days. Can I ramp up my dosage and switch to Pregabalin?

Any suggestions most welcome.

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Lineker profile image
Lineker
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13 Replies
SueJohnson profile image
SueJohnson

Unfortunately neither gabapentin nor pregabalin is going to help much until your symptoms settle. You can ramp up your dosage and then switch to pregabalin or you can switch now. Divide the gabapentin dose by 6 to get the equivalent amount of pregabalin . Better yet ask for a low dose opioid like buprenorphine. Some have used kratom or cannabis temporarily to help.

Lineker profile image
Lineker in reply to SueJohnson

Thanks Sue - what would we do without you. I really appreciate your common sense advice.

One last impossible question: have you any idea how long I can expect to suffer for?

Many thanks

SueJohnson profile image
SueJohnson in reply to Lineker

It can vary from a few weeks - most likely - to a few months. I hope it is the first for you.

707twitcher profile image
707twitcher

If you can get buprenorphine Rx, that might help the transition dramatically. I think I'm an outlier and extremely lucky, but buprenorphine worked for me from day 1. I had tapered pramipexole down to .125mg by then, and was able to completely stop with the buprenorphine. Haven't had a bad night (or day) since.

Lineker profile image
Lineker in reply to 707twitcher

This is really encouraging. I am so glad it worked for you. Are you still taking the buprenorpine? Cheers buddy.

707twitcher profile image
707twitcher in reply to Lineker

Yes - still taking it as Suboxone. Now that I’ve been off pramipexole for a month I’m going to try pregabalin to see if I like that better than just staying on buprenorphine. And waiting another two months to re-check my ferritin levels after starting iron supplements a month ago. Maybe I can stop the meds, but if not, doing .4mg of buprenorphine indefinitely would be fine.

Spurdog1 profile image
Spurdog1

I am watching this as I am on Pramipexole. They tested me for REM sleep, and over a 2 day sample there is no evidence (that does not mean its not happening). I do recall and note events that happened 9 months ago (that I was aware of). I am now hoping to see the local neurologist, waiting for a swift appt. I recently reduced the Pram (bcos of the bad reviews on here - Pramipoison), but immediately had a reaction when cutting from 2 per night down to one. I immedidiately put it back up to 2 per evening, and am stable again, hopefully.

I have putr this on your line so Lineker knows there are others in the same boat

Lineker profile image
Lineker in reply to Spurdog1

Thanks so much for getting in touch. Much appreciated.

SueJohnson profile image
SueJohnson in reply to Spurdog1

You were trying to reduce to quickly. To come off pramipexole, reduce by .half of a .088 tablet 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

As you are probably aware from this forum, gabapentin or pregabalin are now the first line treatment for RLS and PLMD. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). 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 (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to divide the doses on pregabalin) Most of the side effects 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 (200 to 300 mg of pregabalin)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).

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...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

Spurdog1 profile image
Spurdog1 in reply to SueJohnson

How can i thank you Sue, for your neverending care for strangers, me included. So much time spent. Great hugs.Also how do i tag this essay so i dont lose it. Ill take it to the consultant

SueJohnson profile image
SueJohnson in reply to Spurdog1

You can copy and paste into whatever you use for your word processing.

To return to it copy the etc address at the top.

Spurdog1 profile image
Spurdog1 in reply to Spurdog1

Incidentally. The events this january may be linked to "high stress". Ot was a stressful time. Has anyone noticed a worsening of symptoms, or appearance (as for me) in your disorders?

rchobby profile image
rchobby

Unfortunately RC Hobby is not going to be of any help because he is on Temgesic (buprenorphine) as well as 600 mg gabapentin at 6 pm and 600 gabapentin at 8pm. On this regime he sleeps like a baby at the moment. however going back in history he has breakthroughs even on the above regime!! However, he also avoids most fruit and vegetables because his triggers are mainly oxalates in vegs and fruit plus phosphates in prepared meats and rotisserie grilled chickens.

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