Coming down from Ropinerole - what next ???

[mw65]

Last year I was prescribed Pamipexole and it lasted for about 3 weeks before the symptoms reteturned with avengence. I came straight off it and it was very unpleasant for a month. This year I started on Ropinerole and was taking one every few days. After some time and a discussion with the GP I started a trial for 3 month with onep er day. After 6 weeks or so the symptoms returned and after further discussion with the GP I just stopped. Well the result was terrible. Very little sleep and it wasl ike watching drug dependents in films going cold turkey. I asked google and one article I read likened it to coming off cocaine!!

I am not sure what to do next but I have to try something. Does anyone have any advice or experience of trying CBT.

Help needed urgently.

Thanks.

[Hidden]

I'm sorry you've not had any replies as yet.

Your doctor should bave warned you about stopping either pramipexole or ropinirole suddenly. This is dangerous.

You have suffered withdrawal effects as a consequence. These will fade.

It is unusual for these drugs not to work for RLS, so it's possible your symptoms aren't due to RLS at all.

It could be helpful for you to check your symptoms against the RLS diagnostic criteria. If you think you DO have RLS then ask your GP to refer you to a neurologist.

here's a link to the criteria

irlssg.org/diagnostic-criteria

here's some information you may also find helpful.

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

[mw65 in reply to Hidden]

Thanks for the links. I tick all the boxes for RLS, and I have seen a neurologist who confirmed the diagnosis. Both drugs I tried did work initially and then the effect faded and symptoms returned after a few weeks, and a number of articles I have read suggest that this is quite common with dopamine agonists. Not sure if I should now ask the GP to try me on pregabalin or gabapentin, I just don't know.

In the meantime I am looking around for anyone with experience of using CBT for RLS

[Hidden in reply to mw65]

CBT is a great idea for helping you to cope with the RLS.

However, please don't expect it to relieve your actual symptoms, RLS is a neurological condition and CBT will not treat it.

[Joolsg in reply to mw65]

How would CBT help RLS? I’m genuinely curious. RLS is a neurological disease so therapy would not make any difference.

[DicCarlson]

I would start at the beginning - get a complete iron panel blood test and get the actual results. I had raging RLS with a Ferretin level of 49 - docs said it was OK. Supplementation with Ferrous Bisglycinate Chelate took away the severe RLS in a month. Here is an article on CBT (Cognitive Behavioral Therapy) for RLS... sciencedirect.com/science/a...

[ijsgrandma]

I have tried all that you have plus Gabapentine Gralise (time released gabapentine). I augmented on Ropinirole after 2 yrs and was hell coming off. Other side effects to dopamine agonists is compulsive behaviors which I did not know I had until I was off and realized how much money I was spending and one trip to a casino about killed me. I am done with prescription drugs! I now take CBD, which controls my RLS and small amount of THC to help me sleep. Not sure if those are legal where you are. It works most of the time but doesn’t knock me out like prescriptions did. Advantage is no side effects like weight gain, groggy in morning, chronic UTIs and behavior modifications.

But first I agree with others that you should have your ferritin level checked. Mine was 7 the first time I had it checked. It was 94 last time but was awhile ago. I fight to keep it up with supplements and I do think it helps lessen the severity of movement. Good luck.

[grandma_of_7]

oh you poor thing. I think the DA was worth a try, so sorry it augmented! Here’s my history- gabapentin didn’t help, both methadone and buprenorphine worked great but developed opioid itch with both. I’m going to try kratom tonight, and on another forum I heard about using a DA as needed rather than daily, so I might try that although DAs scare me. I’m 70. This sucks!

[SueJohnson in reply to grandma_of_7]

For opioid itch try claritin, allegra or zyrtec.

When you say gabapentin didn't help how much did you take and did you take it just at night and divided it into 600 mg doses 2 hours apart?

I wouldn't take a DA even as needed.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.