Dopamine agonist withdrawal

[JimmyLegs44]

Thank you for your responses. I did contact Dr. B, and he indicated MS Contin was a "tricky" drug to use for RLS because it is long-acting but not as potent as methadone or oxycodone. I did not tolerate it well, as I was very nauseous yesterday, but I'm sure part of that was from lack of sleep.

I threw in the towel yesterday. I'm finding out that two sleepless nights in a row is my limit. Yesterday, my symptoms were intolerable. Not only could I not sit down, my symptoms were there even when I was walking or moving around. There was no escape. A couple of days ago, I wrote "at least I can move around a little" to help with my daytime symptoms. Little did I know. It felt like I was in the depths of hell.

This was my fourth attempt in the last year, and by far my worst experience yet. I have no plans to try again. I will live with the augmentation, as it pales in comparison to the withdrawal symptoms. If I do ever try again, I will definitely see a specialist, probably Dr. B. Maybe I'm one of the hard cases, but I'm not a believer in the 10-day, no coverage plan.

[Orrel]

Sorry to read about your experience in spite of your valiant effort. I am going through the
so-called drug holiday in preparation for my visit with Dr. E on Sept 1. I am not having an easy
time of it even though today is my tenth day of being drug-free. It is hard to get methadone
prescribed where I live. I am using clonazepam which doesn't do much for rls itself but can
induce sleep. I think the 10-day no coverage plan is a little optimistic. In an email response Dr. B said
it was 2 weeks to 2 months

[Polar Bear]

JL44 - you made a herioc effort

I am delighted that Dr B responded so speedily to you, he is a star !

[ViewsAskew]

So sorry it was so hard. I understand - I never could make it myself.

Good to know that MS Contin isn't a good drug to use - I'll try to remember that. And, so glad Dr B got back to you. He truly is a savior to us in so many ways. Sure, I'd prefer to have a doctor locally and one covered by my insurance, but I am happy to fly to CA every year, get a small vacation, get Dr B's personal attention through email whenever I need it (at no charge) and all for about the same as I pay in copays here because no local doctor will talk to me unless I go in.

[Bjorn]

Just thought I'd add to this subject with my own experiences.

I've been on pramipexole for about 12 years and my current effective dose is 1mg at bedtime. I've been getting a lot of RLS symptoms earlier and earlier in the day, usually 3pm or so, but sometimes at noon. My RLS creepy crawly feelngs are mainly confined to my arms.From what I've read on this website, it sounds as if augmentation has set in so I decided to just stop taking the pramipexole for ten days and then see where I am.

Currently I'm on day 4 and I haven't taken the drug for three nights. My experiences so far:

Night 1. I got maybe 3 hours sleep. My arms were jerking around most of the night. I'd get that buildup of "tingle" in my elbow and the only relief was to jerk the arm and slap the bed.

Night 2. Maybe 2 hours sleep. This was the worst night so far. If someone had seen me flopping around like I did, they would have thought I was having a seizure.

Night 3. I don't know, maybe 2 hours sleep. Better than previous night, but I still thrashed around a lot. Right now ( the morning after night 3 ) I'm feeling very sleep deprived, but I just can not take a nap. The RLS symptoms start up as soon as I lie down. I have Tylenol 3 which doesn't help very much. I have a vape cartridge of (sativa) marijuana, which does help but only for 30 minutes or so.

Anyway, I'll add on to this post every couple of days as things progress (or don't progress)

[Orrel]

For about 7 years I took .50mg of pram. When I augmented on that I was switched
to the longer-acting Neupro patch(2mg). But the augmentation continued and was
very bad. I decided to get off the patch by lowering the dose to 1 mg for 14 days.
I have been off the patch since July 15 and am taking clonazepam to help with sleep.
I went through some pretty rough nights but the past two have been better. Time
will tell whether it is a fluke or whether the augmentation is beginning to resolve itself.
Dr. Buchfuhrer says the resolution can take 2 weeks to 2 months. Don't become too discouraged
if your progress seems slow. I know personally how easy it is to lose hope because of the
horrendous symptoms I have suffered during the drug holiday.

[JimmyLegs44]

Bjorn - thank you for sharing your experience, and best of luck to you! Hard to believe, but I'm a bit envious of your 2-3 hours of sleep during the first three days of your withdrawal period. I haven't gotten any sleep for the first two nights in all of my attempts, and unfortunately gave up due to tiredness/depression/anxiety (my wife will attest that I do not make a good sick person!). I hope your daytime withdrawal symptoms are manageable. Hang in there!

Orrel - I hope your recent improvement marks the end of your withdrawal symptoms. Speaking of hope, I think back to how much hope I had after reading the original post in this thread by Chirosyd, and how little I now have as a result of my failed attempts to rid myself of pramipexole. I'm not giving up though; I'm making an appointment to see Dr. Silber at Mayo Clinic. I consider myself lucky that he is only 3 hours away from me. I'm sure he will be able to help me with this issue, but if not, I'll be flying to CA to see Dr. B. I kind of know the drill (10-day washout, etc.), but need some expert help and reassurance to get through it. I will say this though...after this experience with the augmentation and withdrawal issues, my RLS will have to be pretty bad and my quality of life pretty rotten for me to ever take drugs again after I finally do get off the pramipexole.

[Bjorn]

Orrel and JimmyLegs44
Thanks for your comments and encouragement!

My first attempt at stopping pramipexole was about 5 years ago but I gave up after 2 nights. The withdrawal symptoms were incredibly bad. This time, though, I seem to be tolerating the symptoms better; maybe they're less severe.

So far my major problems take place at bedtime when I'm supposed to be asleep. If I relax for one minute it doesn't take long before bam!, my arms start flailing and my legs start kicking the mattress. They just have to move; otherwise I can't stand it. I really really hope this situation resolves very soon!

Tonight will be Night 4 with no pramipexole. (Cue foreboding music)
Bjorn

[Orrel]

Jimmy: I agree with you completely about taking RLS drugs. They all have problems
connected with them. Lyrica screwed up my brain. One morning my wife found her food
processor all taken apart with the parts lying on the kitchen floor. I had no recollection
of doing that. Another incident involved a soap cube used in dish washers. I caught myself
slicing into it, thinking it was cheese. Opioids scare the hell out of me. Benzos can be addicting.
which is why I am in the process of weaning myself off clonazepam. I am anxious to find out
my base line RLS to see if I can tolerate the symptoms. Why the medical profession have DA's
as a first line drug defies all logic. I wish the companies that produce this s...t and the FDA could be sued
for all the pain and suffering they have caused. I often wonder how many people have committed
suicide because of DA augmentation and withdrawal hell. That's my rant for the day. If it wasn't for
my wonderful caring wife, I don't know what I would have done. I will be thinking of you as you seek to
resolve augmentation. Remember Churchill's mantra during the dark days of WW2: KBO which he said
meant KEEP BUGGERING ON.

[Bjorn]

It's Sunday morning and I just endured my 4th straight night without pramipexole. It was bad. As soon as I lay down, the RLS hit me hard and never let go. The only relief was getting up and walking for a while.

So zero sleep last night. It was very tempting to just go ahead and swallow a pramipexole tablet and be done with the symptom. I'm determined to see this through though.

Bjorn

[ViewsAskew]

Keep it up, Bjorn - it is miserable, but you can get through it.

[Polar Bear]

To have made it to the 4th night is a great achievement, well done !!

[Bjorn]

I got through my 5th night without pramipexole, but it was very difficult. I couldn't sleep. I thrashed all night long, I walked throughout the house several times. I think it was Dr Buckfuhrer who said you can't really wean yourself off the drug without the help of a strong opioid. (Tylenol 3 certainly doesn't work) I think that's the case with me.

Anyway, I resumed pramipexole last night, although at a quarter of my previous usual dose and, like a magic wand, the RLS stuff went away. If I can maintain a lower dose from now on, then maybe I got something from this experience.

[JimmyLegs44]

Bjorn - sorry to hear you had to reach for the pramipexole...I've done that myself on 4 of 4 washout attempts. Hopefully you are able to stay at the lower dose and that may help with your augmentation. Did you stop cold turkey from your 1 MG dose, or did you taper down? I believe the recommendation for pramipexole is to not reduce it by more than .25 MG every 3 days. Unfortunately, that just likely prolongs the withdrawal period.

I've been wondering lately if the best approach is to do a VERY slow taper off the drug. In one of my attempts, my PCP had me reduce by .0625 MG every two weeks (my total dose is .375 MG/night). The first two weeks went relatively well, but then my first day of the next reduction was not good at all, so I gave up, not wanting to put myself thru 8 more weeks of hell. I'm guessing I would've seen improvement within a couple of days, so I'm regretting giving up so easily on that one. I also regret not staying on that reduced dose. At the time, I was convinced I needed an opioid, though. I'm wondering now if a better approach isn't to reduce your dose marginally (for example, if you take 3 pills, reduce it to 2 1/2 pills), and stay on that reduced dose until withdrawal symptoms are resolved (probably 2 weeks to 2 months), then reduce by another 1/2 pill, and continue on like this until you are off the drug completely. It might take a year, but in the end if you are off the drug, and were able to minimize the withdrawal symptoms, it would still be worth it. It might allow the dopamine receptors to heal very slowly, little by little, so they don't go haywire when you go completely off the drug. Since I'm such a glutton for punishment, I might try this yet, in a couple of months. I'm still recovering mentally from my last attempt.

I've also thought about ridding my house of pramipexole during my washout attempts, so I am not tempted to reach for them when things get hairy. I'd probably just end up breaking into a pharmacy in the middle of the night and creating more problems for myself, though.

[Bjorn]

JimmyLegs. I didn't taper the pramipexole dosage; I just stopped taking it. I was hoping my dopamine factory would "reset" and I wouldn't have to take the drug any more. And maybe that's the direction things were going, but the withdrawal discomfort ("discomfort" - there's an understatement) was too much to deal with.

Tapering the dose might work I suppose, but I'd rather get off the med as quickly as possible and see where things stand. And to do that I think you'd have to take a strong opioid to combat the withdrawal symptoms (which are formidable!) and also hope the opioid doesn't lose effectiveness over a couple of weeks.