Coming off pramipexole Anxiety. - Restless Legs Syn...

Restless Legs Syndrome

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Coming off pramipexole Anxiety.

moggie8 profile image
55 Replies

Hi as most know I'm withdrawing from this stuff. My question is how to cope with the severe anxiety. That's my worst symptom. Don't want anything for it as the antidepressants push my salt down. Just like to know how some of you coped.

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moggie8
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55 Replies
SueJohnson profile image
SueJohnson

buspar is excellent for anxiety. It is not an antidepressant.

moggie8 profile image
moggie8 in reply toSueJohnson

Hi What I should of asked was I recovered from anxiety using several methods not ruminating, not going down the rabbit hole. But since weining off the pramipexole it's through the roof. My question because I'm slowly taking the dopermine away, could these steps I took before still be beneficial to me. ?

SueJohnson profile image
SueJohnson in reply tomoggie8

try them and see

moggie8 profile image
moggie8 in reply toSueJohnson

Ok I'm going to ask the GP for a codeine tablets. So I will take these the first 4 days of the drop at night.Is that right. That's supposed be be the worst time of what I have read from this website. Then after 2 weeks it settles more.? We see what he says

SueJohnson profile image
SueJohnson in reply tomoggie8

🤞

moggie8 profile image
moggie8 in reply toSueJohnson

No he wouldn't but they wouldn't help me anyhow as I haven't got restless legs very much since I have reduced the pramipexole. Just got the other horrible symptoms as I posted early. I remember you saying it was easier coming off DA meds if you are not augmenting.

Joolsg profile image
Joolsg

I used medical cannabis. It allowed me short bursts of sleep & also helped the anxiety - not completely though.I also think pregabalin or gabapentin would help a little as they are sedating.

moggie8 profile image
moggie8 in reply toJoolsg

I'm making mine worse by ruminating as I said to Sue I had recovered from anxiety until having to wein off the pramipexole, I took the steps not ruminating , and after a long time I was anxiety free. I know I'm slowly removing the Dopermine so if I went back to what I did before would that be beneficial even though I'm removing the dopermine.

Joolsg profile image
Joolsg in reply tomoggie8

Sadly this is a purely chemical reaction. Of course you can try to meditate & do gentle yoga breathing. And try not to think about it too much. I'm sure thatwill help.

But the reduction in dopamine causes the severe RLS and the anxiety.

It will get better once you have been off Pramipexole for a month.

moggie8 profile image
moggie8 in reply toJoolsg

Yes just as I figured . I get the blurred vision headache sick in the stomach , and I'm fueling it by the what ifs lack of sleep. How bad was your anxiety ? You mentioned you didn't get headaches so can you tell me your experience with the anxiety.? And your symptoms.

Joolsg profile image
Joolsg in reply tomoggie8

Well I experienced very severe, all over RLS and violent body spasms every 10 seconds. Zero sleep for 5 days after the last dose of Ropinirole. Crying, depression, suicidal thoughts.

These all eased off with each day. 4 weeks after my last dose of Ropinirole- I was able to get around 3 or 4 hours sleep over 24 hours.

The depression and exhaustion started to settle.

The withdrawal schedule on RLS-UK sets out roughly what you can expect.

moggie8 profile image
moggie8 in reply toJoolsg

Yes I saw the schedule. It's the Dopermine antagonists withdrawal schedule. I was actually asking while u were tapering down. The first 4/5 are the worst and 2 weeks it gets better. Did u use anything while tapering?

Joolsg profile image
Joolsg in reply tomoggie8

While tapering the anxiety was okay for me.I've never experienced anxiety or depression before. It was only after the last dose that I developed anxiety.

I used cannabis and kratom during withdrawal and then asked for diazepam to take 3 or 4 nights a week. That helped a little.

moggie8 profile image
moggie8 in reply toJoolsg

Least your off it now. So 2 weeks after each drop it gets a bit better then u do the next drop. And the last dose after two weeks it kept getting better. Were you on high dose? And for how long?

Joolsg profile image
Joolsg in reply tomoggie8

I was on 4mg Ropinirole for 12 years. Highest dose But we had someone post a few days ago that they experienced augmentation within weeks of starting Pramipexole.

So dose and time doesn't seem to make a difference for some.

It takes around 3 months after your last dose for symptoms to settle to their 'base' level.

Some people can continue without any meds. Some need an iron infusion and then do well without meds.

Everyone is different.

I moved onto gabapentin and tramadol. They didn't help. Then pregabalin and Oxycontin. I was getting 4 hour's disrupted sleep for 5 years on them. The 'top' UK expert said that was the best I could expect & there was NOTHING else he could do.

Luckily I ignored him. I arranged an iron infusion and pushed for Buprenorphine.

I am completely RLS free. Day or night. I sleep 8 hour's every night.

Buprenorphine saved my life.

It will be trial and error to find what works for you.

This forum is actually an excellent RLS study tool. Doctors should read it daily to see what is working for RLS in 'real time'.

It's just a tragedy that we are all conducting our own drug trials and studies on here because we have received zero help from the medical profession.

moggie8 profile image
moggie8 in reply toJoolsg

Sometimes yes we have to ignore what the doctors say lucky you did. Yes this is a fantastic forum I would be up the creek without it. As long as the symptoms start improving after few weeks after last dose. When I looked up the tapering schedule they said each day it gets better

Joolsg profile image
Joolsg in reply tomoggie8

Yes. Each day off dopamine agonists you see an improvement.Stick with it. Good luck.

moggie8 profile image
moggie8 in reply toJoolsg

Thanks

russreynolds profile image
russreynolds

I went cold turkey after 20 years on it. It was a nightmare. But by day 5, got much better. Never experienced anxiety after that point.

moggie8 profile image
moggie8 in reply torussreynolds

So u were on a Dopermine antagonist? We're u on a high dose

Triny profile image
Triny

Hello, I am so sorry that you are experiencing high anxiety! Based on my personal experience (CTed Pramipexole in February 2024 and tapering off Clonazepam currently) if anxiety or other withdrawal symptoms (restlessness, sensitivity to light and sound, palpitations, etc.) start increasing, that means that you are withdrawing too fast. The solutionn is to hold the dose until you stabilize and then continue with the taper by making a smaller reduction and holding longer, if necessary. Please try to avoid, if possible, starting benzodiazepines, antidepressants, cannabis, etc., because they also need to be tapered off cautiously and could give you the same or similar withdrawal symptoms as Pramipexole.

You could read the Ashton Manual (available free online) to learn how to withdraw and aleviate withdrawal symptoms. It’s about stopping benzos, but the principles can be applied also for stopping dopamine agonists and antidepressants.

Take care and stabilize swiftly!

moggie8 profile image
moggie8 in reply toTriny

Thankyou I'm doing what the schedule says. But what I've gathered your going to get bad withdrawal symptoms coming off pramipexole anyway.

Triny profile image
Triny in reply tomoggie8

The schedule is just a general guideline, which should not be followed blindly. Medicine is not an exact science. It needs to be adjusted based on the intensity of the withdrawal symptoms. In order to withdraw smoothly, one needs to listen to their body, monitor their withdrwal symptoms and slow down their taper, when symptoms increase. If one doesn’t do this, one risks to end up in acute withdrawal.

Approximately 20 percent of patients, taking Dopamine Agonist experience the so called Dopamine Agonist Withdrawal Syndrome and have to withdraw cautiously.

Please, try to read the Ashton Manual in order to learn how to withdraw smoothly. It will help you save yourself pain, anxiety, additional health problems and ending up being polydrugged with extra medications, which need to be discontinued cautiously.

Take care!

moggie8 profile image
moggie8 in reply toTriny

I was on .125 and this is my first drop. I took a quarter off. Where do I find Ashton manual. And what dose were you on.

Triny profile image
Triny in reply tomoggie8

I was on 1.5 mg. If a 25% drop is causing you intense withdrawal symptoms like severe anxiety, then you could try a 10% cut for your next reduction, after you have stabilized.

moggie8 profile image
moggie8 in reply toTriny

What medication was that you were on at1.5

Triny profile image
Triny in reply tomoggie8

Pramipexole 1.5 mg.

moggie8 profile image
moggie8 in reply toTriny

Ok I watched a video of Dr Berkowski world export on RSL and augmentation. It's called weining of dopermine anagists. Maybe a a quick look. 5 minutes it goes for. So how long did it take you to get off that amount. Obviously doctor kept upping it. I never upped mine.

moggie8 profile image
moggie8 in reply toTriny

Ok will try the 10% drop

moggie8 profile image
moggie8 in reply toTriny

That manual is about getting off benzos. I'm not on that

Triny profile image
Triny in reply tomoggie8

As I explained, the benzos, antidepressants, dopamine agonists, etc. neurological and psychiatric drugs cause the same/similar withdrawal symptoms, because they all work on the receptors in our brain cells. Please, try to read the chapters on how to withdraw and about the symptoms to help yourself and learn how to have a smooth taper. If you don’t want to read it, then that’s your choice. Sometimes we choose to learn the hard way.

Good luck!

donoughts profile image
donoughts

Hi, I have reduced Pramipexole in the last 12 days from 2x 0.088 to 1.5 x 0.088 , and now on my next lot of 12 days, but I wouldn’t do this reduction without the backing of Gabapentin 1x600 mg four hours before bed. The first week the first two nights were horrendous all night, then it got better and I slept well. I have just reduced now to 1 x 0.088 and the first two nights have been so bad nobody would recognise me as thrash about in temper, am more up than in bed,have terrible body shocks every ten seconds, eat everything in the fridge for something to do in the middle of the dark. I am hopeful nights will get better as I am so tired and nod off all the time, Beware of doctors giving you something to try while you are on a drug, because you need to wean off that one if it is a dopamine agonist. They dont always tell you that! I just listened to something on you tube which was disappointing as it said that if your body has been used to dopamine agonists, then it is more difficult for Gabapentin to be successful. It might take a year to get the d.a out of the body! That certainly worries me as I have been on d.a’s for 17 yesrs and going through this horrid process of reduction to hope things improve! not get worse.

moggie8 profile image
moggie8 in reply todonoughts

Oh yea definitely with you there. I'm only on .125 never upped it I've only reduced it by a quarter and it's hard. Day 5 for me.And it's horrible they say after the two weeks it gets somewhat better. I watched Dr Berkowski video on tube it's called tapering off DA it was interesting. You might want to have a look. Did they ever up your dopermine anagist?

donoughts profile image
donoughts in reply tomoggie8

yes, i went from 2, to 3 then 4 and went into augmentation so came down to 2 reasonably easily but from 2 it is difficult. I will watch video.

donoughts profile image
donoughts in reply tomoggie8

Just watched the video and it is scary and fits. We must fight it and be determined in the daytime , when things are better than nightime, that we dont get depressed, anxious, about these drugs, that our doctors have put us on when they have no knowledge of the consequences. Lets fight it! Not easy , and I probably would not have said that last night when everything was jumping all the time. You cant enjoy all the lovely things in life if you have depression./anxiety Lets say a big No to that and fight. I realise now that I am very impusive, but I fortunately research and end up making good decisions!

moggie8 profile image
moggie8 in reply todonoughts

Yes I agree the doctors prescribe but don't bother to tell us the long term problems, and hard to get off. Apparently the last dose you come down is the hardest. Maybe go slower. How long were you on the poison for?

donoughts profile image
donoughts in reply tomoggie8

17 years. And not one doctor metioned augmentation. They have got so many people into so much trouble. I will go slower on the last bit when I reduce to a half. My knowledgable Italian doctor says stay on half with the Gabapentin at the end.

. Thank you, every little bit helps.

moggie8 profile image
moggie8 in reply todonoughts

No they don't mention anything about Augmentation I don't think they know so what dosage are you on now.

donoughts profile image
donoughts in reply tomoggie8

I came down from 4 x 0.088 Pramipexole to 2 last year and now just weaned down to 1 x 0.088 over these last 2 weeks. Still not out of the woods yet as half will be the difficult one,

moggie8 profile image
moggie8 in reply todonoughts

Did u get dizzy spells like m

donoughts profile image
donoughts in reply tomoggie8

The first couple of days only when I first went on to Gabapentin and reduced Pramipexole but very mild the 2nd day. Nothing to speak of.

moggie8 profile image
moggie8 in reply todonoughts

Are you experiencing anxiety as well coming off this

donoughts profile image
donoughts in reply tomoggie8

No anxiety in the daytime or night. I am normal in daytime, but very bad tempered at night with the frustration of coping with this withdrawal. The d.a. drugs have made me restless, so I cant ever sit and relax as jumpy legs start. I am very impulsive to do something, get bored very quickly. got through tonight by being mostly up, eating, and very wobbly with tiredness.

moggie8 profile image
moggie8 in reply todonoughts

Yes I agree awful feeling in the stomach and neck very lightheaded too. Plus arms don't want to work. Did you have augmentation before coming down doses. I'm day 6 but they say symptoms settle after the first 2 weeks. The first 4/5 days are the worst I'm day 6 and bad still

Triny profile image
Triny

Hereby the link to the Ashton Manual. benzoinfo.com/ashtonmanual/

moggie8 profile image
moggie8 in reply toTriny

Yes I found it I'm Not on a benzo

RonB1 profile image
RonB1

Ashwaghanda

DicCarlson profile image
DicCarlson

I have posted this before for anxiety...

forums.phoenixrising.me/thr...

moggie8 profile image
moggie8 in reply toDicCarlson

What NAG and you said something was a bit better than flaxseed

Merny5 profile image
Merny5

Moggie, withdrawing from DAs is such a difficult thing to do. Never in my life had I experienced anxiety prior to withdrawing. This was brand new to me. I had horrible anxiety, depression, diaphoresis, nausea, electrical shocks shooting through my body along with other unpleasant physical sensations and not to mention very little sleep. The anxiety and depression remained for a very long time. I tried everything to heal. Journaling ( to take note of the progress because it was slow), remaining as busy as possible( which is difficult due to lack of motivation) and CBT. All of these practices combined helped somewhat. I wish you the best! Just know that you will get to the end of this tunnel and there are people here to support you.

moggie8 profile image
moggie8 in reply toMerny5

Thanks were you on the DA long? Are you off it now?

Merny5 profile image
Merny5

yes, I was on them for probably 15 years. I can gladly say, that they are a part of my past.

moggie8 profile image
moggie8 in reply toMerny5

Yep did u do a slow taper? Did it get a bit better after the 4/5 days tapering like they say. How long did it take you to get off

Merny5 profile image
Merny5

Yes, I did a very slow taper. No it did not get better after 5 days. I suffered severe DAWS. It took me about 18 months to finally get off of the poison. BUT I was on a criminally high dose, 12 mg of Neupro. ( max. for RLS is 3 mg.)I kept listening to my neurologist who told me to take more when I was augmenting. It wasn’t until I found this wonderful group that I knew what was going on. I believe my case is not typical. I don’t want to frighten or discourage you. You will get better!

moggie8 profile image
moggie8 in reply toMerny5

Oh my God and he calls himself a neurologist that is ridiculous. So sorry he needs to be reported. The treatment for augmentation is slowly getting of it. How long were you on it. I was expecting to feel a little relief by day 6 the restless legs gone but these other symptoms are bad

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