SOMETHING TO LOOK FORWARD TO

[Lineker]

Three weeks into withdrawing from Pramipexole and I’m climbing the walls. Currently, I’m down to half a tablet, but the days are passing so slowly.

I ( and others I’m sure) need something to look forward to. Could people on this forum, who have made this journey, list reasons why life is better off this drug. It might provide just the right motivation to keep on with this journey. I need to believe my life will be better.

Thanks - all ideas views welcome.

[Madlegs1]

When you finally get off the Pramipexol and survive the post withdrawal period, and get onto your new medication successfully, you will have a new life.

That is according to many people who have been through the process.

Think of nights of sleep, days of activity without dragging around the place.

How about renewing old friendships, taking up old and new activities..

A new life. Full of new challenges that you don't think of now ?

Meanwhile, to help you through the withdrawals.

Make a BUSY list. Little jobs to do all day.

Wash the front door. Hoover the carpet. Paint the "whatever"!😝

Plant bulbs for the summer - to look forward to.

Make up bulk freezer meals for those days you don't feel up to cooking.

Keep busy. Keep active. Walks, cycles, hang gliding or whatever takes your mind off things.

Good luck.👍💚🤠

[Lineker in reply to Madlegs1]

Thank you so much. This is what I needed to read. I hope to report with good news in the weeks ahead. Hopefully, your post will inspire others.

[Joolsg]

Stay strong. You think it will never settle or get better. It will.I went through withdrawal in 2016. In 2021 I started low dose Buprenorphine.

I kept a detailed, daily diary for 2016 through to 2021. It listed ALL the RLS attacks, the severity, the length of time they lasted. How many times a night I would wake up and pace.

Now, I NEVER get RLS.

I look forward to cinema outings, knowing I will NOT have to get up and walk about.

Car journeys are easy. Flights are easy.

I look forward to bedtime, instead of dreading it.

My watch tracks my sleep. I get 8 or 9 hour's sleep every night. The sleep score is always 'Good'.

As Dr Buchfuhrer told me back in 2016. 97% of RLS patients WILL sleep 7 or 8 hour's every night and be free of RLS with the right DOCTOR and the right TREATMENT.

The reason for so much suffering out there is the WRONG doctors are still giving the WRONG Treatments.

Good luck, stay strong, you will get through this and you will be so glad you got off dopamine agonists.

[Lineker in reply to Joolsg]

Thanks for your reply. You paint a great picture of life after the pain of Pramipexole. You have made me want to reach the point where you are. Congratulations and thanks again.

[Jules1953]

Yes , life is certainly a whole lot better since I weaned off pramipexole. I now use Temgesic to successfully manage my RLS. Temgesic is a low dosage of Buprenorphine. Please make sure you very, very slowly reduce the pramipexole. And I found I needed an opioid medication to help me during the final stages of weaning off the pramipexole. I used 5mg of oxycodone once I got to 0.125mg of the pramipexole. I spent 2 yrs slowly reducing from 3.00mg of the pramipexole. And still went through horrendous augmentation once I was down to the lower dosage.

It will be worth the struggle in the long run. I hope you have an experienced restless legs doctor/specialist guiding you through this process.

I didn't but it was this wonderful group of people who got me on the right pathway. I will be for ever grateful.

Wishing you all the best. Kind regards Julie from Western Australia.

[Lineker in reply to Jules1953]

Thanks Julie - your support is much appreciated.

[707twitcher]

I haven’t looked back through your prior posts. I assume you have had opiates suggested to you, especially Buprenorphine? It made my DA withdrawal very bearable.

[RiversW]

Dear Lineker,

As of last night, I am 8 nights away from my last Rotigotine patch and I can tell you that already my sleep cycle is better. Unless my Buprenorphine patch stops working ahead of schedule(which it has), I am sleeping 3 or 4 hours in stretches. Unheard of for me until very recently. It took me about 3 months to wean myself off of the Rotigotine patch. Even though I am still in the middle of post withdrawals and still get RLS symptoms, my life is slowly going back to normal. More energy, less cancelling plans because of no sleep and exhaustion and best of all, psychologically I feel myself recovering from the cycle of pain, no sleep and the anticipation of the night. It is different for everybody but hang in there, your days will improve.

Good luck,

RIvers

[Swankee]

Like you, I am currently on the pathway of withdrawing from Pramipexol, going from 3 tablets a day, slowly over months, down to zero. It will be a long haul but I know that once off it I can start on a better way forward. I just keep thinking that things will get better because they couldn't get much worse. Best of luck with this final stage for you, hopefully I will get there too

[Huntingleroy]

Yes its hell isnt it , been there got the t shirt , nights crawling around begging for help . I used to have 3 or 4 hot baths to calm them down . It took me 6 months to get off Ropinirole but at least day and evenings are brilliant .Are you taking Gabapentin or Pregabalin now as you will need something . I also got Targinact to help with the withdrawal . Nights were good , quite a lot of insomnia but I can live with that . Legs recently getting twitchy so now the fight begins again to get some buprenorphine , wish me luck . At least I have an nhs neurologist now thank goodness. Dont give up , its the toughest thing I have ever ever done . Take care . Prob chat at 3am !