Dopamine Agonists: If we accept in most... - Restless Legs Syn...

Restless Legs Syndrome

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Dopamine Agonists

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If we accept in most cases RLS is related to the shortage of dopamine as a neurotransmitter in brain and therefore dopamine agonists are prescribed, then why they work fine in the beginning and then they worsen the symptoms of RLS in considerable number of cases ?!! :(

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That is a question even the experts have no explaination on why augmentation happens when taking dopamine agonists. When these pills where first approved for RLS use, no one knew that augmentation would happen down the line... :(

Unlike many movement disorders, the drug treatment of RLS is confounded by a tendency of patients to quickly become tolerant to therapy, losing the benefits of medication within weeks or months. In addition, continued treatment with drugs that have lost benefit can actually worsen symptoms, a phenomenon referred to as “augmentation.”10 First described by Allen and Earley10 in 1996, augmentation refers to the phenomenon in which RLS patients under dopaminergic therapy may experience an increase in symptom severity compared to baseline, with an earlier onset of symptoms at night, a shorter latency to onset of symptoms after lying down or sitting, appearance of daytime symptoms, and spread of symptoms to other parts of the body. Generally, augmentation is associated with a change in severity, timing, and body distribution but not the quality of the symptoms. For example, a patient whose symptoms are characterized by “creeping and crawling” sensations continues to experience these feelings when augmentation develops. This rapid worsening of symptoms seen in augmentation is not part of the natural history of RLS and is strictly a drug-induced effect. It is unclear if most treating physicians are aware of the problems of tolerance and augmentation or how to optimally deal with them in managing patients with RLS.

Found this, thought it might help.... :)

in reply to

Thanks Elisse

I guess that leave us a big risk of taking them for relief and ending with so called augmentation . Is there a clear rate in scientific experience of "to what extent of augmentation happens among Rls patients" ? :)

nightdancer profile image
nightdancer in reply to

67% of RLSer's experience augmentation within 6 months, 13% within 2 months, and some never do, while others can get into augmentation within days. And, Elisse is right, there is o answer to your question, yet.

Hello

This is what I found in my site search, regarding the issue :

As currently used, long term dopaminergic treatment for an average ± SD of 2.7 ± 2.4 years produced significant augmentation problems in at least 20% of the patients and only 25% of the patients were totally free of this problem. It is important for physicians to carefully screen patients for changes in RLS symptoms for as long as they are on dopamine agents, with particular attention paid to those patients who present with the most severe RLS symptoms prior to treatment initiation. Given the marked increase in suffering with augmentation, a method for early detection and intervention would be an important contribution to the effective management and treatment of RLS.

ncbi.nlm.nih.gov/pubmed/214...

thedragon profile image
thedragon

This is one of the main reasons I am avoiding the dopamine drugs if I possibly can. What I have read of augmentation and withdrawal , I really don't think I could cope with it. I am managing most of the time with co codamol but hope that 2 tablets per day at night so I can get to sleep will not cause any long term damage. I've been taking them every day now for about 2 years. I stop every now and again when I feel I need more than 2. So I can get the dosage down to 1 then build back up to 2. I do find I bruise more easily.

Hi, dragon, i find i bruise easily nowadays ! do you think its the cocodamol ? i must go and find out, i take more than you i think, as i take mine during the day, for my arthritis, worth checking on tho

Kaarina profile image
KaarinaAdministrator in reply to

Cocos can make one bruise more easily, see below:

Tell your doctor or pharmacist if any of the following side effects gets serious or lasts longer than a few days:

•Constipation

•Feeling sick (nausea), being sick (vomiting)

•Dizziness, light-headedness, drowsiness, confusion

•Difficulty in passing water

•Becoming dependent on codeine

•You get infections or bruise more easily than usual. This could be because of a blood problem (such as agranulocytosis, neutropenia or thrombocytopenia)

in reply to Kaarina

thanks Karrina :D

eileen49 profile image
eileen49

I have had RLS for nearly 20 yrs ( I am 63) and find 4mg of neupro patches and half a 1 mg Ropinorole a night works for me and I have never had augmentation on this thank goodness.

in reply to eileen49

we are at the same age Eileen

May be that is because your RLS is related to dopamine, so you got a result, good for you.

eileen49 profile image
eileen49 in reply to

if I take just Ropinorole or just patches it doesn't work for me but I mix them and my GP says it's ok as I only take half a 1mg Ropinorole with the patch.

ive had RLS for 44 years now, and ive used requip (ropinerole) and got very bad augmentation, ive also used the neupro patch, and got augmentation with this med also, baffles me how we are all so different with the meds

in reply to

I have a feeling of those having bad augmentation they had no problem of their dopamine level in the brain, so they may look for other causes of RLS for fighting it.

in reply to

rajim50, i think this is a little amiss to say, i dont want to offend,, but also i dont want to be offended, we are all here trying to find help, a cure, a bit of relief, we all probe and poke about looking for answers, so to make a statement that you dont think we have a dopamine problem, could be a little of the mark, and if the experts, dont yet know the answer, who can say, i certainly cant make a blanket statement like this, i dont know all the reasons does anyone,,if they did, maybe we would be cured, from whatever causes our suffering, and as for looking for my cause of RLS, i know where mine comes from, i got it from my mum

People have different reactions to the dopamine meds some work better for their RLS than other dopamine meds. Many people have trouble with Ropinerole, (Requip) but find that Mirapex (mirapexin, pramipexole) works better, or vice versa. Then there are the people who find that the dopamine agonists do not work for them at all. they are maybe the ones which the dopamine is not the problem.??? Question mark is for whether that has been studied for. We know that there are other causes for RLS...

in reply to

Hi, I've suffered with RLS since I was a teenager I am now 62. At 40 my RLS was so chronic I was given a variety of different medications nothing worked. In desperation I went to see a private Neurologist specialising in RLS. My mother suffered with RLS also but nowhere as bad as I. First of all I was given Pergolide and Clonazapam, I just about managed on this and put up with the nausea for about 10 years until I couldn't cope any longer. I was given Gaberpentin next and it was like a miracle, no more sickness, but there was problems with the manufacturers and very expensive. I was then given Mirapexin, which was wonderful, but I have to take it just at the right time for it to work efficiently. I have increased the dose over the past 10 years. I started to experience augmentation and was told to come off the Mirapexin. My specialist just said to take Clonazapam and Diazapam whist reducing the Mirapexin. It was impossible, I managed to reduce dosage to 2 x 0.088 mg instead of 4. I have since been to see a Harley Street Specialist and that was a total waste of time and money. He first prescribed Carbamazepine 100 mg, didn't work at all, a complete nightmare, then he prescribed Ropinerole. I had a terrible reaction to that. Since then I have returned to taking the Mirapexin again, I can't live without it and frightened to try anything else. Can anyone advice me?

not for me Rahim, i know mine is dopamine, iron does not do a thing for me, pain meds dont realy help, and my RLS is primary, runs in the family, and i agree with Irene, again sorry, the requip did not siut me very well, but mirapexin is a lot better for me, has been for quite a while

nightdancer profile image
nightdancer

I have never been able to take the dopamine meds. they made me so sick, I never had time to see if I would augment or not on them. One thing I do know, people can be equally low on dopamine or have the same levels as someone else, and the dopamine meds will work for on with no problems, but the next person cannot tolerate, even if all levels are the same. there is no explanation for it yet. I know very few people who can take these meds non stop with no problems ever. Some are lucky, though. ;) all trial and error.

Dear tallua

I really did not mean to offend you, that was a thought regarding to the causes of RLS as Since there is no way to determine patients dopamine level then as Elisse stated "they are maybe the ones which the dopamine is not the problem.??? Question mark is for whether that has been studied for. We know that there are other causes for RLS."

I don't know how genetic RLS relates to dopamine level or other causes but I hope everbody including us get the right meds we need.

in reply to

ok thanks for that

Hello Dear nightdancer

You stated of Dopamine levels in people, my question is how dopamine levels are determine for sure at the first place ? ;)

in reply to

am i right in thinking that they can tell this by using brain donated for research, or /and by brain scans, is this how they see the activity ??

in reply to

im aware of some similar research regarding histamine receptors, i was looking at a few weeks ago

in reply to

Dear tallula

I am sure researcher are working on this issue, if I find anything regarding with it, I will put it here :)

in reply to

Hi again

I found this site regarding to measurement of dopamine through blood test ?! it looks like it is too good to be true.

I am sure a most labs don't know about it.

ehow.com/how_5766116_measur...

in reply to

thanks going to look :)

Walnut32 profile image
Walnut32 in reply to

Rahim, your input is one of the best, most articulate, helpful online. Thanks.

You welcome ;)

When the brain releases dopamine, the dopamine receptors

are sound asleep... they let the dopamine fly right on past

and it never gets to the processors to make it useful to our body..

it's like a fly ball or a miss in baseball... but it's your body and it

needs dopamine but isn't getting it. RLS happens signaling the

brain that we need some dopamine.. You are going nuts with the

need to move your legs.

You take a pill that wakes the receptors wide awake.. and boy are

they working overtime in hyper mode - the dopamine is getting

sucked right up by the receptors - the legs feel good, everybody

is sleeping except the action of the receptors.

The receptors get a little bit burned out and they stop sucking

up the dopamine. They will accept some of the dopamine

but they are clogging up a bit.. the legs are noticing...you are

getting a little restless..

Eventually whatever turned the receptors on gets lost and isn't

working anymore. The receptors go back into sleep mode.

You are feeling it and you are going nuts with the need to move.

The contrast of getting enough dopamine and then getting

very little seems bigger than it really is..

Taking more of the medicine just keeps turning over the cycle.

That's my two cents about how dopamine works... and what

happens when we go into augmentation..

in reply to

Why do peple with rls have tired recopters.

in reply to

I tried to put it into terms so everyone knew what I meant

Using the true terminology confuses people even worse

than my made up names.

Initially, I think that they are slowed down by defect...they

move through but just enough to keep you functional.. but

lacking motivation, the get up and go kind of stuff..

As time goes on, they get to the point that the body starts in with a need to move legs, creepy crawly feelings.

* I wrote a theory of my own. I do not know if this is what truly happens.. the more that I study it, the more that I feel that my theory is correct. We are brainstorming here. At least I am.

in reply to

I see born with bad receptors and worse with time. Got it. Any other sickness with bad receptors? What will make receptors well do you think? Are we born with a certain number of receptors and never get more or better like female eggs. That's what my fertility doctor told me. He gave me klomed to release more eggs. Need something for our receptors. More and better.

Well, we know that we can move dopamine into the area of the receptors,

and we can get the receptors to suck up the dopamine.. (so to speak, lol)

Pills accomplish that for us... it's chemicals.

There are other theories out there that involve histamine overload

too. This is one disease that doesn't have the funding to look at more

than a few things right now. We are getting there by raising awareness

and we need everyone to shout to the world about this so

someone who has it can be reached.

My theory isn't the only one.

in reply to

I put question on how to improve receptors but solution is too hard for me. Says to eat just enuf to survive??? To exercise every day will get make receptors better and green tea. No caffeine because it makes more dopamine but makes receptors worse after time. That is all Internet said.

in reply to

It should say eat to live and stop living to eat..

If you think about that one, you will get it.. =)

Caffeine doesn't produce more dopamine - at least

not that I know of. Consuming caffeine is a bad idea

because the medicines will increase the side effects

which is wakefulness. In other words, our bodies

become more sensitive to caffeine..

Green Tea is full of caffeine unless it goes through

the process to take the caffeine out.. But it has so

many health benefits that it's acceptable to drink

it if you like it.

You need to go to a trustworthy internet site. Some

have better information than others. Some explain

it better.. It helps if you study it and then see an

article on it later.. if you agree, it's a chance that it

might help someone or yourself. Some will be

helped or harmed if the information is wrong..

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