Coming off pramipexole, withdrawal symptoms

[RestlessMe]

I am coming off pramipexole, withdrawing slowly. I am reducing by half a tablet every 2 to 3 weeks. I have now cut out 3 x half tablets.

I am suffering all sorts of weird symptoms. I just wondered if I list them, whether anyone else who has done the same thing can say whether they recognise the symptoms.

I think I am worrying that I’ve got something else going on!!!

Are the symptoms of normal? Will they get worse, better? Should I expect new symptoms to start appear.

Brain fog

Struggling to find the right word for something

Losing my car in the car park

Tired, incredibly tired

Better in the afternoons than in the mornings

Impulse to keep buying things, although luckily I always look for a bargain

Headache most mornings. Fuzzy head all day

Find myself doing things for no reason and no idea why I am doing it

Struggle to focus

Tired but cannot relax

Everything an effort. Constantly pushing myself.

Symptoms worse the day after half tablet

Thank you for listening, to anyone who’s got to the end. I think a lot of the list is repetitive. Some days it’s very scary.

[RestlessMe]

Add breathless to that list

[SueJohnson]

A lot of those symptoms sound like side effects from the pramipexole.

[RestlessMe in reply to SueJohnson]

That’s interesting. So hopefully that will improve the less of the drugs I take? It’s hard to know what is the effects of the drug against what is the effects of coming off the drug

[Birdland]

From my experience while getting of a dopamine agonist, all the terrible side effects kept getting worse until I was completely off for at least a few weeks. And a marked difference after week 5. I think the particulars of each person’s withdrawal can vary.

[Nevergiveup01 in reply to Birdland]

a very interesting discussion. I attempted to wean myself off of pramiprexole under the direction of my physician starting at .625 mg three times daily. I got down to .2mg and the side effects were so unpleasant that I titrated back up to .625. The side effects were primarily fog which just started with the weaning and depression. Meanwhile my physician was not available to respond to any of my questions which made it very difficult. Should I have just pushed through? Sounds like that might be what someone was suggesting and that once totally off of pramiprexole life gets better. I so appreciate any feedback anyone has.

[Birdland in reply to Nevergiveup01]

Weaning off DA's can be a very difficult process, causing havoc in many ways. Do you think you were augmenting? If so then your symptoms should get better when off pramipexole. That's the good news. The bad news is that you have to survive the hell the withdrawal can cause. It seems different for each person. My withdrawal was horrid. I was up to 8mg of ropinirole and had taken it for 16 years. The worst part was the increased RLS symptoms and then unbearable depression due to my brain not knowing how to create it's own dopamine. I tried going cold turkey as suggested by a very renowned RLS doctor. He prescribed opiates in place of DA's, didn't work for me. On my own, I began SLOWLY decreasing. It took me a total of 3 years, with a year and a half break holding steady at 1.5mg. I have been off Ropinirole for 2.5 years now and my RLS symptoms are much reduced. I had augmented very badly. I still suffer from RLS and depression, and don't get much sleep, but I am no longer a slave to Ropinirole.

[Munroist]

They also sound like symptoms of sleep deprivation with maybe the exception of impulsive purchasing. While many people don’t like sleeping in the day, myself included, then if you are not sleeping at night it may be worth considering if possible. Try to do it in the morning so you have some sleep pressure the next night, and also you get the benefits of the rest for most of the day.

[DicCarlson]

Totally side effects either from the Prami directly or Augmentation. Stay the course! Get off that. Side effects listed on the Wikipedia website. One I never heard of "Punding ...is compulsive performance of repetitive, mechanical tasks, such as assembling and disassembling, collecting, or sorting household objects. en.wikipedia.org/wiki/Prami...

[Joolsg]

Sounds like symptoms of severe sleep deprivation which is exactly what withdrawal from Pramipexole causes.The impulse control disorder is the Pramipexole but hopefully it will settle once you're off it completely.

Stay the course. It will get worse when you drop the last dose so take 2 weeks holiday at that time and arrange for someone to be around. You may have several days without any sleep at all and very intense RLS but stick with it as the RLS does settle and you start to get better sleep after 4 or 5 days.

Cannabis and tramadol or oxycodone will help. There's a useful video by Claudia Trenkwalder explaining that most people need opioids during withdrawal from dopaminergic drugs.

vjneurology.com/video/0ej-h...

Do not drive while experiencing withdrawal effects as you are exhausted and not thinking clearly and could seriously injure yourself and others.

If impulse spending on Pramipexole caused issues, be aware you can take legal action against the doctors who prescribed it unless they warned you beforehand of the dangers of Impulse Control Disorder (gambling, shopping, hyper sexuality). There have been successful cases in the UK. In the US, there are several class actions involving dopamine agonists and the pharmaceutical companies had to pay out millions.

You will feel much better once off Pramipexole so stay strong.

[RestlessMe in reply to Joolsg]

Once again thank you. I have decided not to drive when I’m having a really bad day, I’m very lucky that my partner will drive me around. It really helps to talk out loud to someone who understands what I’m going through. And all the replies just give me a boost and the confidence to keep going. Thankfully I always look for bargains! Sometimes I come home I didn’t even know I wanted 🤦‍♀️🤦‍♀️

It’s hard because on the surface I appear to be sleeping, but it can’t be proper sleep, as I’m exhausted.

Thanks for the encouragement, and for the heads up as to what to expect when I get to the end of this journey. Taking two weeks off is really good advice, I might even book a holiday x

[RestlessMe]

The doctors gave me no advice about these tablets at all. I don’t think I’d want to go down the legal route, unless I thought it would help others. I really wouldn’t wish this on anybody!

[Joolsg in reply to RestlessMe]

Do report the impulse control via the UK yellow card scheme. That will help doctors realise it's a very common side effect & will help others who are prescribed the meds. Also report your augmentation because UK doctors refuse to believe it's real or how difficult getting off these dangerous drugs can be.

yellowcard.mhra.gov.uk/

[RestlessMe in reply to Joolsg]

Will do - Yellow card updated. I had forgotten about this so thank you for the reminder. I had already filled in about the augmentation, so just updated it

[TeddiJ]

So sorry and we all feel you! I posted this info for someone else just now:

I would not have made it without kratom and/or hirsuta. You can order some as tea in the UK-someone once posted.

It is a powder that kills the rls in minutes so that you can get some sleep. Helps hugely with the withdrawal from PRAM. Not an ideal long term solution, although it is what I am currently using.

You just need sleep right now, more than anything, so make that a priority. Hang in!

[RestlessMe]

hi, thanks for this. I have been reading about Kratom but cannot yet find a supply to try. This forum is amazing- I would really struggle even more without the support from here

[TeddiJ in reply to RestlessMe]

I am pretty sure Joolsg knows where to order it when in the UK. I think she said you can order it as tea from nearby-perhaps PM her, or just ask her above, as she will know. I use Mitragaia.com in the US, thanks to help on this forum. I know-this forum truly has saved me and so many others!

When and if you do get it, you will be shocked how quickly it helps. Just be sure to keep going with your long-term goals with your rls meds.

[LotteM in reply to RestlessMe]

Most people in the UK order it from The Netherlands. I find kraatje.eu a good and reliable seller.