Question for nerds: I recently read an... - Restless Legs Syn...

Restless Legs Syndrome

21,295 members14,928 posts

Question for nerds

jimmcar profile image
21 Replies

I recently read an article in the NY Times about the science of placebo. (No, this is not an attempt to treat RLS with a placebo.) There is some very interesting research being done these days but my interest is not in the placebo effect, it is in an enzyme called COMT that has a role to play in the placebo effect and has a direct effect on the production of dopamine and noraepinephrene.

Read this quote and if you are still interested, my question comes after...

(The full article can be found at nytimes.com/2018/11/07/maga...

"The rs4680 gene snippet is one of a group that governs the production of COMT, and COMT is one of a number of enzymes that determine levels of catecholamines, a group of brain chemicals that includes dopamine and epinephrine. (Low COMT tends to mean higher levels of dopamine, and vice versa.)"

The placebo research is interesting in itself but what piqued my interest was the correlation of high COMT levels with a low level of dopamine and a low susceptibility to the placebo effect.

I have had a lifelong resistance to all New Age therapies like accupuncture, homeopathy, etc. They just don't work for me even though all my friends and the California culture I call home should indicate a deep belief. So, I can place myself in the high COMT, low dopamine, placebo averse group.

My question is... has anybody ever heard of COMT in relation to RLS? I'm hoping that it may open up new avenues of research into the causes and treatment of primary RLS.

Written by
jimmcar profile image
jimmcar
To view profiles and participate in discussions please or .
Read more about...
21 Replies
Joolsg profile image
Joolsg

Love this post. I’m always fascinated by new theories and this sounds interesting .

I watched a fascinating BBC programme on placebo and the pavlovian response to meds. I’ve been meaning to try the experiment they used to get the same effect from meds by drinking a foul drink after taking meds and then eventually drop the meds but take the drink to see if you get the same bodily response.

I’ll read up, digest and get back to you.

jimmcar profile image
jimmcar in reply to Joolsg

A slightly discouraging implication of this research is that as a high COMT person, I will not get much benefit from the placebo effect. But I wish you well!

martino profile image
martino in reply to Joolsg

I guess this touches on why the soap seems to work for some people. Is it as simple as suggesting that if you believe it will work for you it will (or should I say might)

Would you drink the foul stuff and go off the meds? I take the meds prescribed at the stipulated times. I might possibly add something but I guess I wouldn’t really know if the something had any beneficial effect whilst still taking the meds. My puzzle here is at what point might I go off my prescribed meds to try something else?

Joolsg profile image
Joolsg in reply to martino

Yes I agree. I’ll be scared to drop the meds- clearly the RLS might really play up And I’d get withdrawal symptoms from stopping opioids.

However, it might work????

I’m probably someone for whom it won’t- I’m a sceptic & don’t believe in hypnotism, homeopathy etc and the soap never worked for me.

jimmcar profile image
jimmcar in reply to martino

I might have given the wrong impression with my posting.

The evidence is irrefutable that the placebo effect works for many people, for many different problems. But I would never suggest to anyone with a true case of restless legs to try a placebo and go off of the meds that are working for them.

No, I was more interested in the research on the COMT enzyme. The point of this article was that there's an enzyme which controls the production of dopamine and norepinephrine. And that is what interest me.

I would like to see some research done on whether people who suffer from restless legs have higher levels of this enzyme than others. I think that may be the case for me.

Madlegs1 profile image
Madlegs1

Can't comment on the COMT aspect.

But it is interesting to note the number of people who claim relief by taking quinine tonic water. This is double placebo- there is no quinine in tonic water ( or negligible) and quinine does nothing for rls.

I'm a huge believer in placebo. And it is well proven effective, even when the patient knows it is placebo.

The power of the human mind is utterly impressive.

😎

jimmcar profile image
jimmcar in reply to Madlegs1

That is really funny! I have tried tonic water and even though I was pretty sure that it didn't help I really enjoyed having a bubbly sweet drink in the middle of the night. It can get quite depressing waking up with a sense of desolation and suffering. Something sweet always helps.

Madlegs1 profile image
Madlegs1 in reply to jimmcar

Couldn't agree more! Warm Milky drink with turmeric, cinnamon and honey with sprinkle of cayenne.

That's my particular midnight sneaky drink.

Deelishus.

jimmcar profile image
jimmcar in reply to Madlegs1

Interesting that you mentioned turmeric. I have gone through periods where I make very strong, boiled down and concentrated drink of Ginger, turmeric and honey. This actually seemed to help the restless legs as there is an inflammation component to our problem. Turmeric and ginger are both extremely effective in reducing inflammation.

in reply to Madlegs1

I'll second that on the power of the mind, now if only I can get mine convinced I'm well!

jimmcar profile image
jimmcar in reply to

The power of the mind is infinite, to my way of thinking. We just don't know how to harness its effectiveness. I'm sure that there have been many cases of spontaneous remission of serious diseases through some application of the power of the mind. I would be very interested to know if there are any reputable reports of spontaneous remission of RLS.

Does anybody know of such a case?

in reply to jimmcar

No never heard of anyone using power over mind to go into remission for RLS. The power of the mind can be strong, but .....

jimmcar profile image
jimmcar in reply to

Yes, that would have to be a real miracle!

I wish I could claim to know anything about COMT so as to contribute to this fascinating post. I wonder would Dr. Buchfuhrer have anything to say about it.

jimmcar profile image
jimmcar in reply to involuntarydancer

I'm sure he is up on all the latest research. But this has only a tangential relationship to restless legs. Seems like a long shot but I am always hopeful.

Jphickory profile image
Jphickory

Great post. I appreciate your curiosity and thought process.

jimmcar profile image
jimmcar in reply to Jphickory

Thanks for the appreciation. I love this community and am pleased I have a chance to contribute, even if it's only a question.

Jumpey profile image
Jumpey

Fascinating. Ta for posting. I agree about the power of the mind. Western medicine no where near takes this into account with it's reductionist as opposed to holistic approach.x

bookish profile image
bookish

Hi, I know this is months ago, just searching COMT as recently tested and am homozygous myself, so wondered if you had ever got anywhere with your research. I found this quite helpful beyondmthfr.com/a-genetic-c... I don't know much about the placebo effect but if COMT variants can be behind fibromyalgia it seems reasonable that RLS could be a symptom too.

Hope things are improving for you. Best wishes

jimmcar profile image
jimmcar in reply to bookish

Yes, this speaks directly to my question. Thank you for bringing it up. I'm going to study this article.

bookish profile image
bookish

My pleasure. I found this on You Tube too today. About 18 minutes and from a depression and anxiety point of view but does explain the different genetic variants and a few suggestions about what to do and what to avoid. youtube.com/watch?v=nAFkKOr...

You may also like...

IV iron infusion and questions

was have me get my ferritin levels checked. I figured they would be low, but when the number came...

Questions about Topamax

also might help RLS. Does anyone here know if it causes augmentation (since it's a dopamine...

Thanksgiving and a Question

since I found it. I was at my lowest of low points with RLS this summer. I had to take a leave of...

Augmentation with DAs in RLS but what about Parkinson's - A question I've pondered...

Hi all RLS sufferers who like to ponder.... Auldreekie18's post raises an interesting question...

Question about quitting Ropinirole

I'm worried. I've been taking Ropinirole for RLS for over a year now and, frankly, it hasn't done...