HAS ANYONE TRIED......

[fabPhilly]

Hello all! I'm so impressed with everyone sharing their RLS strategies on this site and want to say thank you. I would love to hear from folks who might have tried any brain/nervous system modulation strategies, ie: tCDS, (trans cranial direct stimulation) rTMS, PEMF, neurofeedback, red light therapy, wearable devices or other newfangled technologies and of course the result. Thank you all.

[Joolsg]

I suspect you may not get many replies because I don't think anyone on the site has tried any of the therapies you mention.I've tried the readily accessible gadgets like Revitive foot stimulation and spiky yoga mats but not any of the others.

Hope you get a response from someone who's tried them.

I have a cupboard full of vitamins,supplements, devices etc - none worked for me.

[fabPhilly in reply to Joolsg]

Thank you. I assumed that to be the case as well!

[Birdland]

I wish I knew more about these and how to pursue them. I’m in US.

[Patsylorium]

Hello fabphilly,My husband used the red light therapy for about 2 and a half years until he went into a home 6 months ago. He is since deceased 5 weeks ago. He had PSP which has no cure and there really is no treatment for it either. So it is quite different from your situation. However when he first started on the therapy he had been in a wheel chair for quite some time ( maybe a year or so) because of the constant falls backwards. About 2 weeks after we started he walked on the beach on his own. We couldn't believe it. We still could not let him walk on his own though because if he fell he would likely hit something and hurt himself and in fact that is exactly what happened. He fell and broke a hip. That was about 2 and a half years ago.

We will never know if the RLT or other things we tried helped but at least we tried.

I think the thing to remember is that the RLT won't hurt you. We had it as a helmet. Don't know if you would use it on your legs. I really don't know much about RLS. I guess if it is a neurological condition it would still be a helmet. The people to contact if you want a helmet are the Dorset Community Men's Shed, Christopher St, Scottsdale, Tasmania Australia. Phone [phone] Members of their community with Parkinson's Disease started using the helmets after some research and were having a lot of success. They are very reasonable priced. Our son an electrician made our first helmet but it was heavy and uncomfortable. The cost to buy one was not much more than making it but originally there was a 6 week wait. I think we paid around $320.00 Aus.

Good luck I hope this helps.

Patsylorium

[involuntarydancer]

This study might be of interest to you:jcsm.aasm.org/doi/10.5664/j...

[Amrob in reply to involuntarydancer]

This looks very interesting. I see the treatment was self-administered. I must read up on it some more. Thanks for the find!

[Hidden in reply to involuntarydancer]

Looks interesting wonder where or if you can get itfrom

[Arjiji]

Hello,As I wrote 5 months ago, I was successful in controlling leg movements with repetitive transcranial magnetic stimulation. (rTMS)The doctor gave me 25 stimulation sessions, on consecutive days, and it started working about a month after it was done. Now, months after the treatment, I only had some unpleasant movements one night that I was able to control by getting out of bed and doing some leg stretching exercises.

Unfortunately, even if I don't move my legs, I can't fall asleep without taking a light dose of hypnotics (zopiclone) or antidepre-sedatives (trazodone). The doctor says that since I have been taking sleeping pills for 30 years, it will take me a long time to get back to sleep naturally and that we should repeat another 10-15 sessions of rTMS more, but at the moment it is not possible due to movement limitations due to Covid.

[Amrob]

I'm starting a course of 30 sessions of rTMS in early September for periodic limb movement disorder.

I'll report here on the outcome.

[Amrob]

I also tried neurofeedback several years ago. From memory it was at least 20 sessions. Unfortunately it didn't make the slightest difference. I haven't seen any evidence that it works for RLS/PLMD but I may be wrong.

[Nimue76]

Hello fabPhilly,

I only just read this but in case you are still interested in exchanging experiences trying these kinds of treatment: I had a long phase of very bad augmentation on Pramipexole so that I would often be close to crying in pain and desperation early in the evening, hardly ever being able to spend a full evening with friends. Because I was so desperate, I now have a whole arsenal of the kinds of devices you ask about. I first got a NIR/red light device and shone it on my legs for 10 minutes per side each day. Then I additionally used a PEMF device at 10-14 Hz on the leg representation areas of the motor cortex for 30 minutes/day. After about a month, I was symptom-free in the evening and the Pramipexol gave me symptom-free nights again. I also use a full-body PEMF mat at night. I track my sleep and never had more than 1-5% deep sleep but after a few months of my experiments, I regularly had 'normal' deep sleep phases, and I had a lot more energy during the day.

Then I was sloppy for a few weeks and have had a few bad days again. So I'll try and be more disciplined once more and hope it will have the same results. The PEMF mat at night still takes the edge off and I still have a lot more energy than I used to have, though.

[fabPhilly in reply to Nimue76]

Hello Nimue. Thanks for your update! Are you using a Biomat? I would love to know which particular devices you are using. For myself, the only thing which has helped me sleep better is organic medical cannibis tincture. Been using for at least 2 months now and has made a helluva difference. Thanks again for writing in.

[involuntarydancer in reply to Nimue76]

Hi Nimue,

Thanks for posting this. Are you still taking pramipexole at your original dose? If so, what dose are you taking? Is there any chance the PEMF mat would be effective without any drugs?

Is the ultimate aim of the PEMF mat effectively to impact symptoms by counter-stimulation of nerve endings? Does this make the therapy similar in effect to the relaxis pad and even the cold water therapy (I realise the physical application differs - the PEMR using electro magnetic pulse whereas the relaxis is by vibration and the cold water by yet another form of nerve stimulation) that some find helpful?

It would be wonderful to find a non-invasive treatment that actually worked. I speak as someone who spent over 1,000 euros on a relaxis pad which I now never use.

[Nimue76 in reply to involuntarydancer]

Hi involuntarydancer,

In order to combat my RLS, I actually got a portable PEMF device first to ideally impact brain activity. Chunyan Liu et al. , for instance, found that "High-frequency rTMS delivered to the leg area of the primary motor cortex may raise functional activity in the sensorimotor and occipital regions, leading to improve symptoms in RLS patients.

These results provide novel insight into RLS pathophysiology and suggest a potential mechanism for rTMS therapy in idiopathic RLS patients." They did not find a difference between drug naive patients and those taking drugs. So, yes, my hope was (and still is) to be able to reduce the dose. Ideally, I would want to get off the pramipexole altogether. As I said, I was sloppy for a while but am using the portable device again daily. I'll see how it goes.

I got the Bemer mat with a view to more generally improving circulation, etc. and then just happened to find that the sleep programme helps my restless legs as well. And my legs no longer feel tight all day as though they were never really able to recover.

Chunyan Liu et al. "Mapping intrinsic functional brain changes and repetitive transcranial magnetic stimulation neuromodulation in idiopathic restless legs syndrome: a resting-state functional magnetic resonance imaging study" Sleep Medicine 16 (2015) 785–791

[involuntarydancer in reply to Nimue76]

Fascinating. Thanks. Please keep us updated.

[Nimue76 in reply to involuntarydancer]

Will do

[Nimue76]

Hi fabPhilly, I am using a Bemer mat. If I were to buy a new one, however, I would pick one that allows you to choose between more than two frequency levels. And the Bemer is ridiculously expensive.