Damage to dopamine receptors? - Restless Legs Syn...

Restless Legs Syndrome

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Damage to dopamine receptors?

Invegg profile image
12 Replies

It's a while since I have posted here but have been checking in constantly. While trying to process the plethora of information here, a question came to mind. Is there qualified proof or evidence that Pramipexole causes permanent damage to your dopamine receptors.

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Invegg profile image
Invegg
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12 Replies
SueJohnson profile image
SueJohnson

I do not know of any studies per se but the experts including Dr Buchfuhrer all believe this. If one's dopamine receptors are damaged gabapentin and pregabalin won't work and increasing one's ferritin also may not work. There are certainly a number of people on this forum who have been on a DA and found this to be the case.

Invegg profile image
Invegg in reply toSueJohnson

Thanks Sue. Because of the condition(RLS) I'm constantly looking for answers and to get to the root of the problem. Please don't think I am being pedantic but could it be assumed that there is, to date, no known way of measuring the health of dopamine receptors in the brain.To change the subject slightly, I had a recent experience of having done a job involving a lot of stooping and bending on one knee or two. My lower back and hips were in agony by evening. That night my RLS returned with venom even though I was getting relief up to then with pramipexole, pregabalin and tramadol in low doses. It did resolve after a few hours but leaves me thinking that because I have a lot of degenerative disc damage especially in the lower back, could it's return have been caused by aggravated nerves in the lumber/coccyx area. I realise I'm probably clutching at straws!

Your thoughts

SueJohnson profile image
SueJohnson in reply toInvegg

Yes it is certainly possible.

The health of dopamine receptors in the brain can be indirectly measured using brain imaging techniques like Positron Emission Tomography (PET) and Single Photon Emission Computed Tomography (SPECT)

MrCrow profile image
MrCrow in reply toSueJohnson

Have you had these done? Any significant insights?

SueJohnson profile image
SueJohnson in reply toMrCrow

No

Munroist profile image
Munroist

I not aware of any study which explicitly tested the function of dopamine receptors after long exposure to dopamine agonists but there are a few indicators that damage is done to the supply and regulation of dopamine. Firstly the dose of the DA often has to be increased because it becomes ineffective. This indicates that there have been changes to dopamine system which may or may not be specifically the receptors. Secondly after long exposure to DA’s or augmentation some people report that after withdrawing from the drug, if they go back on it they augment much more quickly which indicates that more lasting damage has been done. Lastly many people who have been on dopamine agonists for a long time or have augmented often find that other drugs such as pregabalin or gabapentin are ineffective which may also indicate that permanent damage has been done. However there are a wide range of reactions to dopamine agonists, some people withdraw and find their RLS goes away, and some find it remains severe so potentially some people are more vulnerable than others. What is more clearly understood is that most people will augment on dopamine agonists over several years resulting in worse RLS and necessitating a difficult and often traumatic withdrawal. In addition a significant number will suffer from side effects such as Impukse Control Disorder. Regarding your back problems, there is a documented relationship between nerve issues and neuropathic pain and RLS. I have lower back/disc problems with a mild form of permanent neuropathy, odd sensations etc. and my RLS does seem to worsen if I aggravate it, although not dramatically.

SueJohnson profile image
SueJohnson in reply toMunroist

I have never heard of anybody withdrawing from a DA and having their RLS go away unless they did something else to stop it like taking iron or stopping a trigger.

Munroist profile image
Munroist in reply toSueJohnson

I have seen more than one who said their RLS was very much better or almost gone after withdrawal. I didn’t keep the posts but I don’t think I’m imagining it. It does seem odd because if your RLS was negligible then why were you on DA’s to start with? However I didn’t follow it up at the time.

Itsatom profile image
Itsatom

What are the implications of damaged dopamine receptors, life-long RLS and depression? I have been off Pramipexole since June of this year and it has been extremely tough to say the least. I'm taking 1/8 strip of Suboxone every night along with 100mg of Pristiq. And 3 weeks ago I started taking Pregabalin (50mg in the morning and 100mg at night). My depression has gotten much better and my RLS seems to be under control with the Suboxone and avoiding triggers. However, I have tried to ween off the Suboxone and the RLS comes back aggressively. And I'm not seeing any effect on the RLS from the Pregabalin (though it seemed to quickly help with the depression). So, I realize all these drugs might be taking care of the symptoms of damaged receptors, and if I got off of them all, then I'd see the effects of damaged receptors. But I would love to think the brain can create new pathways which will naturally take care of some of the symptoms. I hate to think of having to be on all these drugs for the rest of my life.

707twitcher profile image
707twitcher in reply toItsatom

Seems like the underlying issue in this thread is base line RLS when no medications are involved. While augmentation makes RLS worse, maybe stopping DAs brings the RLS back to a calmer base line for some, thus seeming to be a big improvement? In my case, the worse RLS symptoms (involving arms and torso) of augmentation have remained and become a part of my baseline RLS. I stopped DAs a year ago. While Suboxone works great, I do get the occasional flare-up from triggers or if I take an afternoon nap, and that usually means the awful upper body RLS for me. Adding more Suboxone always relieves it, but the base line RLS level is definitely worse than it used to be pre-augmentation.

Itsatom profile image
Itsatom in reply to707twitcher

Thank you, that makes sense. I'm not sure you are saying this exactly, but I'd like to think you're saying dopamine receptor damage implications are more limited to RLS and not necessarily depression. When I was getting off Pramipexole I knew it was going to be tough but I did not anticipate the level of depression.

I'm curious, 707twitcher, do you plan on staying on the Suboxone indefinitely? Have you tried getting off it? I'm hoping the Pregabalin will start working for the RLS so I can eventually get off the Suboxone. It works great and I'm not aware of any side effects, it's just such a hassle to get. But my doctor seems open to me having it long term so maybe he will start giving me more in between visits. At this point I have to go see him every 2/3 weeks.

707twitcher profile image
707twitcher in reply toItsatom

I’ve tried pregabalin and gabapentin a few times without it helping my RLS any. So I assume my dopamine receptors are presumably still damaged.

I would love to come off buprenorphine due to the side effects. I’ve tried dipyridamole, Nidra TOMAC bands, and a few others. But nothing else works for me. So I am resigned to staying on buprenorphine indefinitely.

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