DA Withdrawal: I'm now past my day 3 of... - Restless Legs Syn...

Restless Legs Syndrome

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DA Withdrawal

Heatherlss profile image
12 Replies

I'm now past my day 3 of the dopamine agonist withdrawal. I had been taking 0.125/0.0625 mg of Pramipex for the last seven months or so but decided to stop with the fear of augmentation and the fact that Pramipex had clearly made me dependent. A night without Pramipex started to mean that I would get no sleep whatsoever.

Day 1 was relatively fine. I took Ultram as told by my doc to alleviate the withdrawal and it worked to an extent as I did manage 4-5 hours of fragmented sleep. Day 2 was seemingly even better as I did manage to get 5 hours of sleep straight. However, it was last night i.e. Day 3 that really proved just how potent Pramipex as a drug really is. I was up almost all night shaking my legs and cycling. Went to sleep around 4 and did manage 2-3 hours of fragmented sleep but when I woke up at around 7am, it was shocking to still have RLS.

After a couple of fine days, I am now worried about the prospect of going to sleep tonight. How is it likely to go on from here on now?

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Heatherlss profile image
Heatherlss
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12 Replies

Hi, I can't answer your question, I have heard varying accounts of how long the withdrawals can last. I've slowly reduced from 0.75mg last October, now on day 3 of 0.0625mg, or as near as you can cutting tabs. Have done fairly well so far. Just woken after 9 hours sleep. Sleep a bit fitful and some twitchiness. I'm guessing things will really go haywire in 4 weeks when I intend to stop altogether.

This morning feeling sort of trembly all over, but it's OK.

I did accidently miss a 0.125 mg dose about a week ago and got the twitches, but took the tab belatedliy and got to sleep.

So far, despite withdrawing I'm generally sleeping well, in fact too much! Feel groggy after 9 or even 10 hours, whereas I was only getting 3 hours from Oct 2018 to Feb 2019.

I think (hope) that you (and I) might get off quite lightly with withdrawing. I know I can manage with only 2 - 3 hours sleep, but none would be bad.

How long this lasts seems to vary from what others say. It doesn't sound as if you're getting DAWS which can last months, a year and some have to give up withdrawal altogether.

I hear that the opiate can help. I'm not taking any, but have some Clonazepam, Zopiclone and codeine available if necessary.

Keep us informed.

Heatherlss profile image
Heatherlss in reply to

Hi Manerva, I am blindly counting on what was written in the Johns Hopkins Article for withdrawal. It said that day 5 onwards it could get lighter. Each hour I'm suffering with this, I'm trying to remind myself that this won't last for long. I also get the sense that the dose of Ultram is a little on the lower side but again, focussing on the part that I haven't taken the medication for that long a period nor have I augmented. Just trying to stay positive. Good luck to you too.

in reply to Heatherlss

5 days onwards sounds good to me.

Zbirth1 profile image
Zbirth1

Hi Heatherlss, I’m glad you’re getting off Mirapex. It is an evil drug & I can’t believe they’re still prescribing it. 😤😡 From the hundreds of accounts that I have read here I don’t think there’s rhyme or reason to how long withdrawal lasts. It varies widely from person to person. I have talked to people who are into their 2nd year & others who had a couple of bad weeks & then were fine. I went off Mirapex in mid February due to severe augmentation & am now in my 5th month of withdrawal. It seems like a lifetime. I did a lot of research prior & my sleep doctor was very open to my suggestions. He told me that the withdrawal would be similar to heroin withdrawal and would last about 30 days. It took 150+ days for me to finally have more good days than bad. Luckily medical cannabis is available to me & I made up oil capsules that knocked me out and, in the beginning, I slept better than I have in many years. I also started 5 mg of Hydrocodone 3-4x a day & tizanadine (muscle relaxers). I won’t go into all of the details of my withdrawal so far, suffice to say it has been the hardest thing I have ever done & that includes cancer, bone infection/amputation, heart attack & septic shock. But, and this is a biggie, i’m a survivor and I wasn’t going to let it win. You WILL be a survivor too but it’s not easy. There may be times you want to start Mirapex again just to get some relief and you’ll have to fight that urge. Keep reminding yourself that this too shall pass, maybe not fast enough, but it will pass & YOU CAN DO THIS! I’m an old childbirth instructor and I used many of the things I taught in class. I suggest that you talk to your doctor about low dose hydrocodone or Oxycodone. This has helped me more than anything. Don’t hesitate to reach out to the people on this forum. Their experience, wisdom, empathy and encouragement has also been a big source of support. Hang in there. Sending thoughts of peaceful zzz’s to you. 🥺😴😴

Kayakcarole profile image
Kayakcarole in reply to Zbirth1

Thanks for your post. I have been off Pramipexole for a year now after using it for 10 years. I admit I am quite surprised though by the number of people that talk about relief from narcotics. Any codeine at all sends my legs into orbit. I can’t even use Rx cough medicine that contains codeine. Please explain low dose hydrocodone.

Heatherlss profile image
Heatherlss in reply to Zbirth1

Hi! You're right. It is absolutely unbelievable that a small medicine can cause so much trouble once you stop taking it. I'm now on day 8. The withdrawal has not been that bad to be honest but the RLS has constantly been troubling me. It didn't used to be like this before I had started taking the medicine which makes me sad. I read that the RLS gets back to the way, after some time, like the way it used to be once you stop taking the medicine. I'm eagerly waiting for that day. Now that I think of it, my RLS used to be well managed in the sense that I didn't need any medication to manage it. I hope it goes back to that situation.

Zbirth1 profile image
Zbirth1 in reply to Heatherlss

How are things going Heatherlss? I’m hoping you are getting through this without too much agony & able to get some restful zzz’s 😴😴😴

Heatherlss profile image
Heatherlss in reply to Zbirth1

Hey thanks for asking. I don't know what to tell you. I'm managing some sleep here and there but it's been 2 weeks now and the RLS hasn't settled down. I say so because I'm pretty sure it wasn't like this before I had started taking Pramipex. Just spending my time researching about when there is a chance that my legs start calming down. I had read 2 weeks but clearly that didn't apply to me.

RoDomHarr profile image
RoDomHarr in reply to Zbirth1

Hi,

Thanks for your post, a sobering read. I was taking an over the counter supplement of L-Dopa (Macuna Puriens) for a few months (240 mg) for RLS.

It started augmentation so stopped cold turkey and then only realised a week in that it causes awful withdrawal symptoms...

I have taken two other dopamine supplements, uridine (which increases D1 receptivity) and L-Tyrosine which is a natural precursor to L-Dopa. Not sure whether this is helping or hindering the withdrawal process to be honest.

I'm now two weeks in and the symptoms are savage bad (crushing depression, nervous system pain). My RLS symptoms are relatively fine though, have eased if anything.

Wondering how long to expect the symptoms I'm sharing here?

Thanks.

Heatherlss profile image
Heatherlss in reply to RoDomHarr

Hi RoDomHarr,

I'm sorry you're having a hard time. I can so relate with your sufferings. I'm not very knowledgeable about augmentation with Macuna pruriens. I did try taking it however, it did nothing for me so I stopped. I think You're the first person here who I've found out is struggling from augmentation with Macuna. Were you taking any other medication for RLS before MP ? If yes, then that could be the culprit.

Either way, you could benefit from trying some codeine as I've heard that it is OTC and see if you are able to find some relief. I would also recommend you to email Dr Buchfurher, who is an rls expert. I'm sure he would have an answer for you.

If you're indeed suffering from Augmentation from MP or DA, I hear that it does take a while to settle down. Hopefully,it will settle down for you. If not, perhaps you need to see a neurologist and try staying away from DAs even if this is your first shot at medical treatment for RLS.

I hope you find relief. Please, do email Dr B and also, please keep us updated. You could PM me anytime you want. I'll be happy to provide a virtual shoulder.

RoDomHarr profile image
RoDomHarr in reply to Heatherlss

Thanks so much. Can you send me Dr B’s email?

Heatherlss profile image
Heatherlss in reply to RoDomHarr

somno@verizon.net

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