Dopamine agonist withdrawal

[JimmyLegs44]

jaybird8 - Thanks for sharing your story, and congrats on getting off Mirapex...that is no small feat! I have a few questions for you if you don't mind:

1. What was your tapering schedule? I believe it is generally recommended to reduce by .25 MG every 3 days, so I was curious to read that you were at .125 MG for a time.

2. I'm assuming you had no covering agent to help you get thru the withdrawal?

3. Did you have "round the clock" symptoms during the withdrawal, or mostly just during sleeping hours?

4. Did you have significant daytime/evening symptoms before the withdrawal from Mirapex (due to augmentation)? If so, have they been mostly resolved now that you are off Mirapex?

Just speculating, but I'd guess the continuing depression is from prolonged sleep deprivation and/or from your brain trying to play "catch up" by having to create dopamine on its own again after not having to for the past 7 years. It is the "feel good" chemical after all, so it makes sense that you wouldn't be feeling all that great until your brain is able to produce dopamine at more normal levels. It will likely just take a little more time. Also, I believe depression is a known side-effect of Gabapentin, so that may be contributing. If it lasts much longer, I'd discuss it with Dr. Earley. Hopefully some of those that have gone through this can comment on this. I haven't made it that far yet.

[ViewsAskew]

Congrats!!!!! And hope it continues to get better.

I wonder if the depression is related to simply the changes in your brain chemistry? Could be that it will work itself out. I like JL44's suggestion to ask the doctor if it lasts very long. And, if you are taking the gabapentin regularly, it definitely can cause depression as already pointed out.

[jaybird8]

Glad to add some more color and answer what I can. FYI...45 year old male who also has sleep apnea. Bedtime is fun!!

1) I tapered down every 3 days. (1) 0.75 to 0.50 (2) 0.50 to 0.25 (3) 0.25 to 0.125 (4) No Mirapex for 10 days. Started Gabapentin after the 10 day drug free period. Started on 300mg and have progressed up to 900mg. Getting to sleep and staying asleep though waking up a bit foggy.

2) No other covering agent. I had been on Clonazepam while on Mirapex...a very low dose. I cut that out immediately in the first step down phase and had no other assistance.

3) Noticeable symptom were during sleeping hours.

4) I have always been one to bounce my legs at my desk or at the dinner table but I have never had daytime symptoms that made me real uncomfortable.

I am hoping the depression is just "hangover" like. As you both mentioned, brain is still adjusting and trying to heal and reset. I did some reading this past weekend and discovered Gabapentin could well be contributing as well. I have been Mirapex free for 5 weeks and was hoping I would be in a better spot mentally by now. It is not severe, but neither is it fun. Focusing and contributing at work is a big struggle. Hoping to speak to Dr. Early today. Struggling with whether to pursue medical treatment for depression. I just don't want to jump on another medicine if it could impact the brain adjustment/healing/resetting process post Mirapex. Just want to feel better.

Thanks for your kind words!

[ViewsAskew]

Let us know what Dr E says.

I've had issues with depression off and on throughout the med roller coaster. It's very debilitating. One thing - not likely - have you had your vitamin D checked lately? It's implicated in depression and RLS/WED, not to mention other stuff. Given your situation, it sounds more likely to be the drugs or change in them, but if that doesn't help, this will be tucked this into your back pocket .

[JimmyLegs44]

Thanks for the response, jaybird8. Good luck with your depression issue. I'm expecting a long road ahead with depression a distinct possibility, as I'm contemplating another "Mirapex cessation" attempt on my own as I await my appointment with Mayo (they said it could be anywhere between 2 and 6 months). I'm a little more prepared this time, as I will go in not expecting to sleep for days. Every other time, I had some type of covering agent so was expecting at least a little sleep, which never materialized. I'll plan on taking a week or so off of work. I still have some gabapentin left from an earlier attempt, so I'd go as long as possible without any covering agent (10 days if possible), then go on gabapentin for a few weeks, then try to go off all drugs completely. I'm planning on beginning the tapering process in mid-October. I'd start sooner, but my brain is still fuzzy from my last attempt, and I need to be "on" at work for the next 7-8 weeks. Plus I'd like to give Seratame more time to do its thing.

My last attempt was my worst, and it was with the assistance of morphine. I suspect the morphine made it worse at times. I'm probably better off going the Dr. E route with no coverage. From the little bit I understand about opioids, although they don't act directly on the dopamine receptors, they do effectively increase dopamine production, so in theory the dopamine receptors are still getting "bombarded" as they are on DA's, which it seems to me would cause problems when coming off the opioid similar to DA withdrawal. Just a guess. That's probably why the JH docs are going the "no coverage" route. I previously thought they just didn't want to deal with all of the issues that go along with prescribing opioids, but now can see that they are probably right; the opioids only delay the inevitable. Not an issue as long as you stay on opioids indefinitely, but to me that is a last resort.

Hopefully I'll get a call from Mayo to schedule an appointment soon so I can get the expert help I need rather than try another attempt on my own. I am anxious to get this resolved by year-end, though.

[ViewsAskew]

Let us know what you do and how it works.

[JimmyLegs44]

My Mayo appointment is now set for mid-November. It sounds like they will do a sleep study. Does that sound normal? Not sure how that will help, but I guess I'll go thru the motions. I've scrapped my plans to try another attempt on my own...I'll just wait for the Mayo appointment.

My RLS has been much better since starting Seratame. Not sure if that is just a coincidence. I'm only up maybe once or twice a night with mild symptoms (stretch and go back to bed), and my daytime and evening symptoms are much better also. I haven't had to use my recumbent bike in the middle of the night for several weeks. Even so, I still plan on getting off pramipexole. Hopefully it will be little easier if my symptoms are less severe going into the attempt.

Watched Dr. Winkelman's webinar. I find it interesting how different doctors treat augmentation. His approach of adding Gabapentin (or other alpha-2-delta ligand) and attaining an effective dose, then gradually tapering off of the DA makes the most sense to me. It appears he is not an advocate of no coverage like the JH docs are. I only gave the Gabapentin two days, and did not attain an effective dose beforehand. Dr. W does tell his patients to expect a rough patch during the first week or so after a step-down in dose, but that at least they should expect to get some sleep.

[tea4one]

New to the Board. Wanted to share my experience with others. Long story short.
58 y/o very healthy male with moderate to severe case of Primary RLS from age 30, inherited it from my father. Sinemet - augmentation, then Requip - augmentation, then Mirapex - augmentation after about five. Went to see Dr. Christopher Earley at John Hopkins. He recommended withdrawal from Mirapex for 10 days and then re-eval for next step. Withdrawal was not as bad as I had anticipated, as I have taken a dopamine agonist every night for the past 28 years except for one night by accident. It has been two weeks since the 10 day withdrawal, and I am now on no medication. I have been sleepinig 4-8 hours per night with no prescription medication. I have a script for Lyrica if I choose to try it. I have leg, arm and axillary tingling, but nothing else. If my symptoms do not get worse, I will choose to stay medication free. It feels good to get off the dopamine agonists. Just thought I would share my experience with others. Obviously, every medical condition/history is different. Just my experience. I would have never thought getting off these dopamine agonists would have such a positive effect on my RLS. Augmentation is nasty!

That's fantastic and gives me hope. I will attempt to come off of my opiode med after returning from a half-marathon the first part of October. Did you ever have trouble with your circadian rhythm, being unable to sleep at night after having stopped all meds? If so, did this subside?
Thanks.

[JimmyLegs44]

jkendrick - Don't hold your breath waiting for a response from chirosyd. I've been waiting for 3 months. As is often the case on boards like this, sometimes you don't hear back from folks once their issues are resolved. I'm guilty of that myself, having been away from this board for 4-5 years at a time.

My experience is very similar to chirosyd's. I am a 45 y/o healthy male with moderate to severe RLS since age 30, inherited from my father. Sinemet - augmentation, Mirapex - augmentation after five years, then attempted Requip - instant augmentation, back to Mirapex with increased dose earlier in the day, worked for 4-5 years, now severely augmenting once again. I have a hard time believing chirosyd's claim that the "withdrawal was not as bad as anticipated". Most of us that have gone that route have experienced living hell. Words cannot describe the agony. But I guess like chirosyd said, everyone's experience is different. Despite the difficulty, I'm not giving up hope. Can't give up hope. Can't lose faith.

Good luck with your half-marathon and subsequent drug holiday attempt.

[badnights]

jaybird8 - the insomnia - or as I prefer to call it, hyper-alertness in the evening and early night - seems to be a characteristic of WED/RLS for some of us. I am not sure what to recommend, as I am still struggling with it myself. I have managed to move my bedtime to 2 am from 4 am or later, but not really successfully - there are too many other things going on.

I take zopiclone, used to be 7.5 mg nightly but I cut it back to half of that. I swore it was free of side effects for a long time, but I gradually have come to believe it probably was contributing to or causing my brain fog. Yet, if I didn't take it I would get no sleep at all. I suffered many months after my other symptoms - the abnormal sensations and urge to move - were mostly under control, unable to sleep; until I started the zopiclone. So it was a life-saver; but I really wish I could find a way of adjusting my circadian rhythm instead.

Your depression might be one of three things, the way I see it (not that I know much of anything). One, your're not sleeping, and that dicks with your head, it can cause depression all on its own. Two, gabapentin. It can cause depression and even suicidal ideation and attempts. When I was taking gabapentin, altering the time of day I took it by an hour could make my mood wildly erratic. I suffered severe depression that came and went while I was on it, for 7 months.
Three, depression travels with WED/RLS, even separately from the obviously depressing effects of the disease and the potentially depressing effects of the meds. That is, people with WED/RLS are more likely to also have depression than the general population, and some of them had depression for years before there was any RLS/WED. The same brain systems might be involved, making us more likely to have depressive illnesses as well as WED.

As for what to do about it, talking to your doctor is pretty important, especially since the gabapentin miught be causing it. Keep a close eye on your mood and observe if it gets worse. Take this seriously please - ok? hugs

[LinW]

I was on mirapex for over 15 years. I gained weight because of compulsive eating, developed severe insomnia and had to keep increasing the dosage to get any relief at all from my rls. I tried to switch medications two years ago and found I couldn't tolerate ANY of the other medications recommended for RLS. After undergoing genetic testing, I found that I can not metabolize opioids at all. Last February my doctor recommended that I quit taking mirapex because of the side effects. I have to say that the dopamine withdrawal was the worst thing I have ever experienced! I truly felt as if I was going to die. My RLS was uncontrollable. My anxiety was off the charts and I literally got no sleep at night for about a month. My legs would jerk and spasm so severely that my husband had to hold me up. The only relief I had was when my husband took me to use our club's hot tub. It was like heaven but unfortunately the club closed at 10 and I was left with no help all night. Well, I am proud to say that I stuck it out and am now drug free. Unfortunately, that also means I have nothing to help control my rls. I have tried CBD, melatonin and other non-prescription treatments, I found a wonderful doctor who was a specialist working with dopamine therapy. With him, I found I was one of a rare number who has extremely low dopamine and seratonin. After several months, my body was still unable to take in enough dopamine and seratonin to help my rls. Hit that brick wall again. I pace the floor from 11pm until about 7 or 8 am. I can actually feel the calm settle in my legs in the morning which is when I try to lay down and sleep some. I am fatigued all the time. Needless to say I suffer from depression. I continue to hope that many of my current symptoms are the result of DAWS which I realize can last for weeks, years and even forever. I scan websites and this blog for any non-prescription supplements that will help me but haven't found anything that works. I haven't given up but sometimes things do feel hopeless. Oh, I also went to several therapists. One told me she didn't know how to treat my type of insomnia, another said she couldn't help but suggested I look into a chronic pain group and a third, well, when I told her how little I sleep she said that if she slept like I did she'd kill herself. Whoa, not much help there. Anyway, thanks for "listening". It feels good just to write this down and share with people who actually understand what I have gone through and am struggling with now. Thanks.

[JimmyLegs44]

I have to say that the dopamine withdrawal was the worst thing I have ever experienced!

I couldn't agree more with this statement. I'm currently withdrawing from Mirapex (my 5th attempt in the past 14 months), and it is the hardest thing I've had to do in my life. My current attempt, I'm taking baby steps. I've tapered down from .375 mg over the past 63 days (roughly .0625 mg every two weeks), and added Gabapentin at first, then went to Mayo and switched to Lyrica. Tonight, I will take no Mirapex, and the thought scares the s#@t out of me, because I know what's happened the last 4 times. I sure hope the Lyrica and the fact that I've stepped down so slowly helps me get a little sleep. I've been taking 300 mg of Lyrica, and sent a message to my doctor to ask if I could step this up to 450 mg for my first 10 days off Mirapex, if needed. It has definitely not been a fun 63 days. I've found that I sleep better on the couch downstairs than in the king-size, memory foam bed that my wife and I just purchased. We bought the bed because of my RLS, so hopefully my wife wouldn't awaken when I would get in and out of bed all night. Most nights, I pace the floor in the basement at all hours of the night, getting an hour or two here and there, totaling 5-6 hours of very fragmented sleep. For whatever reason, I've found playing a soccer match on the Wii (FIFA '15) helps me to be able to fall asleep for an hour or two more than almost anything else. Whatever works, I guess.

I've also added Seratame and acupuncture this time around. They both worked well at first, then it became difficult to tell how effective they were, mostly because of the withdrawal symptoms I'm sure. After this is all said and done, I plan on being drug free for a period, while eliminating the Seratame and acupuncture at different times to see which of these was actually helping, if either.

You mentioned increasing dopamine...have you started eating foods that increase dopamine? I did a search once (or maybe I came across it on this site), and there is a long list of foods that help increase dopamine. I know almonds, apples, bananas, and yogurt are just a few, so I've started adding these to my diet. These are items that are good for you anyway, so really nothing to lose. Exercise also increases dopamine, and moderate exercise has been shown to help RLS.

If you haven't already, I would give acupuncture a try. I know I'm starting to sound like a broken record, but for those like you that are suffering and almost out of options, what do you have to lose? Give it a fair shot....go every week for 3-4 weeks, then once a month. Finding an experienced acupuncturist may make all the difference; they are not all equal. If after 2-3 months you don't see improvement, then it probably won't work for you.

I hope you are able to find something that helps.

[tea4one]

Hi Orrel, I eventually weened off of my last DA with the help of clonazepam. I have attempted a drug holiday from an opioid, but had no luck. This may be due to worsening symptoms, but I don't know.

[JimmyLegs44]

I'm going to try to post an update every 5 days of my current DA withdrawal attempt. Forgive me if it is somewhat incoherent; I feel like I'm working with half a brain right now.

I made it through night 5 of no Mirapex. Three of the five nights (including last night), I have gotten basically no sleep until morning. Maybe 2-4 15 minute stretches, but certainly nothing refreshing. The first night, I tripped over a footstool and fell down after falling asleep while walking around. I'm lucky I didn't hurt myself. I've also done a few strange things during the night, which I'm attributing to the Lyrica (currently taking 450 mg to help cover the withdrawal symptoms, which it is not doing a good job of). Nothing like Orrel unknowingly taking apart a food processor in the middle of the night, but enough that I'm planning on stopping the Lyrica when this is over (my plan was always to be drug-free anyway).

I'm able to get 2-3 hours of sleep between 6 a.m. and 9 a.m., so I've been going in late to work so I can get at least a few hours of sleep. I also try to nap during lunch, but I'm usually able to get only 20-30 minutes of sleep. Unfortunately, I'm very busy at work right now, so can't take time off to deal with this.

I really underestimated how bad this would be this time around. I thought I had a good plan in place, with the very slow taper (.0625 mg every two weeks), adding Gabapentin, the Mayo appointment, switching to Lyrica. I naively thought the final reduction would be just a little worse than when I reduced from 0.125 mg to 0.0625 mg. Dr. Earley even cautioned in his webinar how bad it would be when stopping completely, whether you taper slowly or go "fast and furious". I was skeptical, so thought I would challenge his theory, but in my experience it's true, even if you taper very slowly, it will still be hellish when you stop completely.

The biggest benefit of the slow taper, though, is my daytime and evening symptoms were completely resolved before going off Mirapex completely, and I've also been able to nap again (something I hadn't been able to do for 10+ years, due to RLS). My last attempt, I had 24/7 symptoms for 2 days straight. This time, my symptoms are only present from about 10:30 p.m. to 6:00 a.m., allowing me to get some sleep after 6 a.m.

I have absolutely no intention of turning back, despite the sleep deprivation. I've come too far.

[Polar Bear]

JimmyLegs - you are sounding very positive and I'll follow your updates with great interest.
I too would dread the cold turkey approach, possibly favouring the tapering method, even though many experts would say to go cold turkey.
You already seem to be achieving progress with regard to symptoms.