Adding pressure is reducing my symptoms

[midnightmadness]

I've been taking Dopamine for the last 6 months and it is helping immensely. If my legs still act up after lots of exercise or too much sugar, I have recently found relief by putting pressure on my right upper buttock. Used a bean bag (the ones for your neck) it's got good weight and the beads conform to my body when I lay on it. It seems to be just the right pressure. I usually experience the madness on the left side, next time I get it on the right side I'll see if putting pressure on the right buttock will hip. I'm assuming there is a nerve there that likes the pressure.

[Hidden]

Thanks for sharing this.

I do find what you write quite worrying.

When you say you've been taking dopamine for 6 months, what exactly are you referring to? What is the name of what you're taking?

Presumably you're taking a prescribed medication and hence it will be identified on the box.

If the name "Levodopa" is mentioned then, yes, this is dopamine. However Levodopa is rarely prescribed for RLS, usually only for Parkinson's disease.

If the names pramipexole, ropinirole or rotigotine are mentioned. These are NOT dopamine, they are dopamine agonists.

If you've been taking any of these drugs then I hope that whoever prescribed it to you explained the risks of taking it. I hope they also discussed other alternatives.

They all have the same risks, but rotigotine has the least risk, then progressively riskier are ropinirole, pramipexole then levodopa.

If the prescriber did not discuss risks and alternatives with you then I have to say, if you live in the UK, they have behaved unethically and possibly illegally.

Please see this post

healthunlocked.com/rlsuk/po...

I hope that whoever prescribed the "dopamine" at least warned you to stay on as low a dose as possible and if it should fail then you must not increase the dose.

It's great that the pressure strategy you describe helps with your symptoms.

I also note that some time ago you said that potassium citrate was working for you. I wonder if you're still taking this and if it's still working?

[midnightmadness in reply to Hidden]

No, the potassium citrate stopped working, it seemed to wear off, would work less and less, then not at all. I hardly even take meds for a headache, so I really wanted to try as many natural remedies as possible. The Dr. that prescribed the Auro-pramipexole 0.25MG let me know that some folks need more dopamine then others; my legs had gotten so bad again I was willing to try anything. It seems she was right in my case. I hope this too does not wear off. I've been on the dopamine for over 6 months and the only time as I said above that it does not seem to do the job is when I've had a lot of sugar or have done a lot of exercise. The medication sure does take the full 2hrs to kick in; if I forget to take it 2/hrs before bed then I’m squirming for quite some time; this is where I’ve been trying the pressure on the buttock thing or as commented bellow “Femoral nerve” (I’ll be looking into that)

[midnightmadness in reply to Hidden]

"Pramipexole is a dopamine agonist that works by helping to restore the balance of a certain natural substance (dopamine) in the brain" I'll double check the side effects but I've not experienced any that I know of. Thanks for the heads up.

[Hidden in reply to midnightmadness]

Your doctor then has apparently not warned you of the risks of taking a dopamine agonist such as pramipexole and hence their conduct is unethical and possibly illegal.

Certainly in the UK your doctor has acted against the guidance of the General Medical Council and, it appears contrary to the law of informed consent.

Also when deciding on prescribing medication, your doctor should have discussed alternative options with you and it seems they haven't done this either.

It's up to you what to do about this, but it appears that it is far too common for doctors to disregard ethics and law when it comes to prescribing dopamine agonists and as long as they're allowed to get away with it, the longer they will carry on doing it.

The risks of taking a dopamine agonist are augmentation, loss of efficacy and Impulse Control Disorder, (ICD). ICD is not that common but loss of efficacy and augmentation are very common and it's mainly a matter of time before they occur.

The three main RLS expert organisations now recommend that dopamine agonists are NOT prescribed as first line medication for RLS because of these risks. The alternatives are recommended i.e. either pregabalin or gabapentin.

Please see this link

pubmed.ncbi.nlm.nih.gov/274...

Loss of efficacy usually precedes augmentation. This is where the drug stops working. Often Drs then advise an increase in dose. However, increasing the dose and continuing to take the drug then leads to augmentation. This may take some years to happen, but it can happen in months. Once augmentagtion happens, the only really effective way of dealing with it is to withdraw from the drug. Withdrawal is very diffcult because of potentiallly severe withdrawal effects.

The usual starting dose of pramipexole is 0.125mg and if this works, it shouldn't be increased. The maximum licensed dose for RLS is 0.75mg, but RLS experts now believe it shouldn't be increased more than 0.25mg.

I wouldn't worry about this now. If the pramipexole is working then continue. However if it starts to fail or if symptoms actually start to get worse, then I suggest you would need to think about withdrawing from pramipexole and switching to an alternative.

I am only telling you what your doctor should have told you.

[Accipiter]

Femoral nerve, there are a few ways of targeting that nerve to stop symptoms.

[midnightmadness in reply to Accipiter]

“Femoral nerve”, good now I don't have to refer to it as the area in my buttock. Thank you!

[MumofSam in reply to midnightmadness]

I’ve found exactly the same thing with putting pressure on what I now know is the femoral nerve. Also, when my left arm starts playing up, there’s a spot around/behind my shoulder blade that works the same way if I put pressure on it. I don’t think it takes away the symptoms for me, it’s kind of like really ramping them up by turning them on and it’s in such a concentrated spot you stop noticing your legs or arm for a few seconds.

[midnightmadness in reply to MumofSam]

The first time I noticed relief from pressure, my husband said he had just lightly touched the area above my right upper buttock, he felt pulsing. I felt 0 symptoms as soon as he touched the area and I was like what did you just do?He applied pressure (oddly I could not feel the pressure just felt the continued relief of symptoms). He could feel the pulsing the entire time. He held the pressure for about 5 min, I felt a tiny bit of symptoms return nothing that would keep me awake.

[Lapsedrunner]

The femoral nerve supplies the front of the leg!!

I would stick to just describing where!

[joker826]

Where is the femoral nerve located?