Dopamine agonist withdrawal

[ViewsAskew]

In the past, when you stopped, did you ever make it five days without any drugs?

We all have to be comfortable with what we're doing....that said, for me, I don't know that I'd take that long to titrate down. It's just going to keep you miserable longer. The hard part happens when you stop - you aren't using so much that you would likely have issues stopping it more quickly. It's the next five days that are supposed to be the worst.

[Orrel]

I have never gone five days without any drugs. I got off .50 mg pramipexole by using the longer acting 2 mg
Neupro patch. However, I just ended up by augmenting on the patch. My current object is to
get off the patch, first by using the 1 mg patch and then nothing. I am following the titration directions of a local
neuro whose name I got from the RLS Foundation's search engine. At least he "gets" rls and didn't try to increase
the dosage but told me I had to get off DAs. I do have an appointment with Dr Earley on Sept. 1 and will keep
it. But the augmentation symptoms were so severe that I couldn't wait but had to do something ASAP. I can't
believe how much better I feel. At the present time, the symptoms are virtually non-existent. The difference
after a few days on the local neuro's titration regimen is unbelievable. I realize that when I go off the patch
completely, it may be a different story.

[JimmyLegs44]

Just visited Dr. Early myself today. My guess based on my own appointment is you had no additional medical assistance.

This surprises me. Based on everything I've read on this discussion board, as well as in the book "Clinical Management of Restless Legs Syndrome" (2nd edition), a potent opioid is almost always needed to get thru the withdrawal period. I thought this was the consensus among RLS "experts"? As I indicated earlier, I've failed in three attempts so far, and now am hoping for an opioid to get me thru. I've registered for Dr. Early's webinar next week and am very curious to see what he has to say on this subject. I have purposely planned my next doctor's appointment for after this webinar so I can be better prepared for the appointment.

those first 2 to 3 days of the drug free period...a period he suggested I would not get a wink of sleep

I'm not sure how anyone can go that long without any sleep whatsoever. I went 46 hours and felt like bodily systems were shutting down. I actually caved in after about 42 hours and took my DA, but it took 4 hours to kick in. I do have a job to get to whether I sleep or not. That 2nd night was the worst night of my life. Maybe if I took some time off work, I could make it without sleep for 3 days, but I doubt it.

For those that have gone thru this with the assistance of an opioid, does the opioid allow you to get a decent amount of sleep during the withdrawal period?

[Orrel]

I thought the same as you, that an opioid is necessary to get off a DA. However, reading some of Dr. Earley's
online material, I don't think he prescribes opioids so that the dopamine receptors can reset themselves Since
cold turkey is his way, I found myself wondering why I should wait until my September visit to him. Since I am
going to have to do it anyway, I might as well do it now and get the hell behind me.

[ViewsAskew]

I thought the same as you, that an opioid is necessary to get off a DA. However, reading some of Dr. Earley's
online material, I don't think he prescribes opioids so that the dopamine receptors can reset themselves Since
cold turkey is his way, I found myself wondering why I should wait until my September visit to him. Since I am
going to have to do it anyway, I might as well do it now and get the hell behind me.

It's worth a try. Here's what I'd do. Try it. IF by day 7, there is NO difference and is hasn't let up, I'd keep the appointment and go see him and tell him that you tried for over 5 days/nights and it didn't get better. If it is a bit better by Day 6 or 7, hopefully you can wait it out until Day 8 or 9 and reassess. By Day 9, I'd quit if it wasn't significantly better, though, and take a small amount of DA.

BUT - you may be surprised. I quit on Day 5 - didn't make it through it. So, I will never know if it would have worked. I do know that for some people who did it cold turkey, it did not abate by Day 6, or even by Day 10. One person in particular took 3 full weeks for it to be resolved. But, she got through it!

[ViewsAskew]

To JimmyLegs44, I did it with an opioid. I tried once with other DAs - that augmented me more immediately. Then I tried twice without anything. I lasted 5 days the one time - no sleep except 2-3 minute episodes where I'd fall asleep in a yoga pose and wake up jerking. The other time I gave up after 3 days.

I eventually was prescribed methadone. I had NO withdrawal symptoms at all. But, because I'd already used so many things, my doc kept me on methadone. I have no idea what would have happened if I'd come off of it a month later. I wish I had - just to know what my "true" and untreated level of RLS/WED was.

[Orrel]

I used the last patch last night. My moment of hell is about to begin. During this time, is
there any relief at all from rls symptoms or should I expect constant non-stop 24/7 symptoms?

[JimmyLegs44]

In all of my attempts to wean off Mirapex, I never even made it completely off. I got down to .125 MG a couple of times, and got no sleep. I gave up after a couple of sleepless nights. In those experiences, though, I did notice that my daytime and evening RLS were actually better, but my bedtime symptoms were much worse (hence no sleep). I would guess it's a little bit different for everyone. Good luck to you. I'm starting my next attempt next week.

[ViewsAskew]

For the five days I did it, I has worse symptoms 24/7. The worst was the PLMW - I would be walking and my leg would shoot out from under me - kicking. I did get a bit of sleep in the bathtup - 20 minutes of so at a time in a really hot bath. But, the hot bath thing doesn't work for everyone. I do not remember getting any sleep at all. It was also 10 years ago....so i could be misremembering.

[JimmyLegs44]

Just watched the webinar on drug holidays. Dr. Earley indicated those on a drug holiday should expect almost zero sleep for the first 4 days. Starting my next (and hopefully final) drug holiday next week. This may be a dumb question, but does it make sense, knowing that I probably won't get sleep anyway, to drink a lot of coffee or even take NoDoz to stay awake during normal bedtime hours? I know caffeine is considered an RLS trigger, but I doubt it will exacerbate the already severe withdrawal symptoms. The main reason I've failed before is because I get so tired, all I want to do is sleep, so I end up reaching for the pramipexole. Maybe the caffeine will actually help me get thru it. Thoughts?

[figflower]

Coffee/caffeine is a substance of addiction. It supposedly causes a release of dopamine so it does the same thing that Mirapex does, on a smaller, shorter time scale. So I think the reason that people think that coffee makes their RLS worse is because like any good dopamine agonist, it down regulates your receptors and in the long run makes your RLS worse. I have read on more than one occasion about people who consume coffee to help their RLS and to fall asleep. Plus coffee might be bad for your gut microbiome and those little microbes might be the source of some people's RLS so best to keep them happy. I know that for me, 3/4 of a teaspoon of cream of tartar (which is pure potassium) will get rid of my RLS when I'm having an attack for an hour or two. It doesn't work at all for me unless my stomach is empty. Large doses of potassium cause a quick short pop of dopamine...at least in the brains of rats and I guess mine too. Once again, how is that any different from the dopamine agonists? I don't think it is so I don't recommend it when withdrawing from the DAs. For people like me, with infrequent attacks it's probably ok.

Here is the litany of substances that I have read that have helped people with RLS to fall asleep, yet don't seem to be a dopamine agonist:

1. 2-3 pills of 400IU of vitamin e
2. One or two aspirin
3. One Tylenol (no codeine)
4. 300 mg of niacin (the kind that does cause flushing). CANNOT be taken on an empty stomach. I have tried Niacin several times for RLS and it works great for about one or two hours then my RLS seems ridiculously worse. Maybe because I consumed a lot of food in order to stop the really bad flushing from happening. Large meals in the evening will almost always provoke my RLS.
5. Intermittent fasting. I have never heard of this helping anyone with RLS but I have heard of people like me who claim that large quantities of food make their RLS worse. So you would think fasting would do just the opposite. And, once again, the d2 receptors in rats' brains are greatly improved by fasting. And supposedly we with RLS have very bad d2 receptors. Fasting does not mean no food. It means less than 600 calories for men and 500 for women.
6. One or two pills of iron bis-glycinate. This is the only thing that works for me every time and all night. And it does not seem to be a dopamine agonist, rather it shores up our shoddy receptors...temporarily. So like fasting, it should do no harm. The worst thing that would happen is that it wouldn't help.
7. Teaspoon of mustard in a cup of water. People swear to the high heavens with this one. I have no idea of the mechanism behind it. It might be a dopamine agonist. I googled mustard seed oil (which is the active ingredient in mustard) and I did not see anything about it causing a release of dopamine. So there might be no harm in trying it.
8. Oddly enough, some people swear that emptying their colon will relieve their symptoms of RLS. Sadly, I am one of those people as well.

Good luck next week.

[ViewsAskew]

JummyLegs - I honestly don't know. I got really tired, too, and gave up on Day 5. More than once, lol. It could be that it would help - as you said, if the symptoms are already that bad, can it really be worse?

[Orrel]

I thought that using an augmented DA was hell but it was nothing compared to what I am now
experiencing withdrawing cold turkey.All the predictions of others are true: constant twisting and turning,
and writhing in agony without any relief. I hope this gets begins to get resolved within the 5 days that many talk
about. I would like not only to throw in the towel but also to pull the plug, I can't go on living this way.
At the same time, I know I can't go back to DA 's.

[JimmyLegs44]

Thanks for the responses. Hang in there Orrel...hopefully the worst is behind you!

I know there is somewhat of a controversy among the RLS experts about whether or not to use a covering agent (most likely a potent opioid) during the withdrawal period. I wonder if using an opioid just for the first 4-5 days would be a good idea, to get thru the worst of it. Then take a 10-day drug holiday. I know Dr. Allen and Dr. Earley seem to believe that the opioid only keeps the withdrawal symptoms at bay and they will re-appear once the opioid is stopped, but personally I'd rather take that chance than potentially suffer needlessly. I think I'd always have that in the back of my mind. I'm just having a hard time with the thought of only getting 1-2 hours of sleep (TOTAL!) for the first 4-5 days, and then not much more for the next 5-6 days. I can't imagine that is good for a person's health.

[Orrel]

I am following Dr. Earley's regimen as I see him on Sept.1 I thought I would like to have all the "hard
work" behind me when I see him. I don't have too much breakthrough during the day. My horrendous
symptoms start between 7 and 9 p.m. and last until 3 to 4 a.m. After that I can get a few hours sleep.
That is the way things are now. As I tell my wife, "The only predicable thing about rls is its
unpredictability." I used the last patch (2 mg) on Sunday night and on the advice of a local
neuro left it on until Wed. night. So today is at least the second day of the ten-day drug holiday.
I find it hard to see any light at the end of the tunnel, especially in the middle of the night when symptoms
are the worst and diversions are hard to find.