Neurofeedback for RLS?: A friend of... - Restless Legs Syn...

Restless Legs Syndrome

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Neurofeedback for RLS?

Notlikinthis profile image
17 Replies

A friend of mine who had some anxiety issues, among other things went to a psychotherapist who did Neuro feedback sessions. He did not want to take any psychotropic drugs to treat his problems. It consisted of mapping the brain's activity then correcting the imbalances with very tiny impulses of electricity. He said it was painless and fascinating. It completely corrected the depression and anxiety. I hear it helps other issues as well. It was life changing for him

Would it possibly help with RLS? I contacted the therapist who does this and she told me she honestly doesn't know if it would help but she would be willing to try. She wouldn't charge me if it didn't work.

Since some of the drugs they use to treat this nasty condition are brain related, I was thinking I may try this, hut I wanted to see if anyone on this forum had already done it. I just want to get off the ropinirol and not take ANY pharmaceuticals!

I'm so tired of being exhausted from not sleeping that I'd dance naked around a bonfire on a full moon if that helped. (hahaha)

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Notlikinthis profile image
Notlikinthis
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17 Replies
BJamn profile image
BJamn

Tried that....the bonfire thing....not the other thing.

Robynasmith profile image
Robynasmith

Watching with interest , if you go ahead do let us know ,as I have other neurological conditions as well

Joolsg profile image
Joolsg

If you're on ropinirole and it's clearly not helping, sounds like augmentation.Read the pinned post.

You'd be better getting off ropinirole ( reduce by 0.25mg every 2 weeks) & ask for opioids to deal with severe withdrawal symptoms.

While you're in augmentation, nothing will help until you're off ropinirole.

Notlikinthis profile image
Notlikinthis in reply to Joolsg

I do not want to use opioids at all. I have been on 2 mg ropinirol. I have been reducing it by .25mg every 2-3 weeks. I'm down to 1 mg now. I have used opioidss in the past when I had my knees replaced. I did not react well to them so I prefer to avoid them.

Joolsg profile image
Joolsg in reply to Notlikinthis

Fair enough. I hope you have a safe withdrawal and find a solution to your RLS after withdrawal.

Barb574 profile image
Barb574

Sounds like it may be worth pursuing. Iam desperate. I’ve gone thru augmentation & am now on Methadone. I’ve tried every RLS drug & opiod there is.... they all cause extreme dizziness, as I am apparently very drug resistant. At this point I’ll try anything. I only sleep an hour at a time, at best.

Notlikinthis profile image
Notlikinthis in reply to Barb574

Oh man, do I hear you. I wake up about every hour and a half, sometimes every hour. I don't even remember what its like to sleep the whole night through. If my legs aren't jumping around, I have to pee! I wish there were answers!

Graham3196 profile image
Graham3196 in reply to Notlikinthis

I have sent some information by PM. Good Luck

Dougg profile image
Dougg

Hi. I'm actually trained in neurofeedback, and in my experience, the answer is "maybe". It's my understanding that neurofeedback (at least the type I learned, which is the Othmer method) is helpful for some cases of RLS, but it doesn't work for everyone. That may be due to the unique nature of everyone's brain, or the varying nature of RLS causes (I suspect there are many), or both. If you have good trust in the practitioner, it's probably worth a try, particularly given that she won't charge you if it doesn't work. Good luck, and please report back results if you decide to proceed.

Notlikinthis profile image
Notlikinthis in reply to Dougg

Thank you for this information. I think I'll go ahead and give it a try. You just never know! Unfortunately this lady is booked out a month so it will be awhile but ill report back on what happens.

Dougg profile image
Dougg in reply to Notlikinthis

Sounds like a plan. One thing that one of my teachers shared about RLS and neurofeedback is that, in their experience, it doesn't take long to find out whether it works or not. For most conditions, our standard suggestion for neurofeedback is 20 sessions, as some changes take awhile. But my teacher indicated that, for RLS, you should know within a few sessions whether you're getting any useful result. I hope it works for you! (And Sandpoint is such a beautiful place!)

58anniem profile image
58anniem

That sounds so interesting, never heard of neurofeedback. Is this lady in the UK? I would also be very interested as my RLS is also in addition to anxiety and depression amongst other issues.....I have also tired so many different drugs which never helped and suffered the consequences but now have come off all over time. I just take dihydrocodine once at night which masks the awfulness of RLS & PLM for a while and gives me some sleep. ...if someone could take away my my head battle and tension in my chest it would be life changing....

Notlikinthis profile image
Notlikinthis in reply to 58anniem

She's in the US, Sandpoint, Idaho. There may be similar therapists in the UK, I would definitely look into it. RLS is miserable. If you're like me, you've probably tried every "cure" out there. It would be nice if we could find something that works. An earlier reply to my post states that it may or may not work. I'm going to give it a try.

Tanker1 profile image
Tanker1

I found one paper from 2012 that indicates neurofeedback can help:

isnr-jnt.org/article/view/1...

s_gc profile image
s_gc in reply to Tanker1

Thank you so much Tanker1, I just read this article now. It's so interesting even if it relates to only two cases, the results are amazing although would have been good to understand how the selection of cases occurred in the first place (i.e. has there been any cases that did not respond to the treatment?). I should also look into neurofeedback and see if I can get the treatment once the pandemic is over (I had read other useful information shared here like the link between RLS and SIBO but concluded that I was not suffering from SIBO so was no point getting the SIBO treatment...).

s_gc profile image
s_gc

Best wishes to you Notlikinthis, and thank you for sharing this, never heard of neurofeedback either but can't wait to hear back. I really feel for you and Barb574 and all of you out there who can't sleep more than 1hour or so at a time. It happened to me for about 3 months so I know how horrendous it gets.

Amrob profile image
Amrob

I tried neurofeedback (approx 30 sessions) and it didn't make a jot of difference.

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