Spinal Stimulator

Please share your experiences, successes, and failures in using non-drug therapies for RLS/WED (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc. Also under this heading, medical interventions that don't involve the administration of a medicine to the body (eg. varicose-vein operations, deep-brain stimulation). [This forum contains Topics started prior to 2009 that deal with Non-prescription Medicines, Supplements, & Diet.]
Fishfood
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Re: Spinal Stimulator

Post by Fishfood »

Wishing you success and also a suggestion. Have you tried acupuncture while reducing the Methadone? After three spinal surgeries I had horrible withdrawal from the opioids. It was only acupuncture that finally ended the physical dependence. I've tried acupuncture for many things in my life since it's covered by my insurance and at the very least, I feel relaxed after. The only thing it every completely knocked out was the opioid dependence.

debbluebird
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Re: Spinal Stimulator

Post by debbluebird »

Fishfood wrote:
Mon Mar 15, 2021 5:17 pm
Wishing you success and also a suggestion. Have you tried acupuncture while reducing the Methadone? After three spinal surgeries I had horrible withdrawal from the opioids. It was only acupuncture that finally ended the physical dependence. I've tried acupuncture for many things in my life since it's covered by my insurance and at the very least, I feel relaxed after. The only thing it every completely knocked out was the opioid dependence.
I tired it years ago. It hurt like crazy. I am so pain sensitive. Also not sure if insurance would cover it.
I am stopping the methadone today. It will take a week for it to get out of my system. I talked to my stimulator rep today. It was my decision to stop today. I wanted it out of my system. We will work to find the right position with the stimulator. Then I will deal with the gabapentin. I took it last night so I could get some sleep. They stimulator worked before and it will work again.

ViewsAskew
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Re: Spinal Stimulator

Post by ViewsAskew »

Acupuncture drove my RLS crazy, lol.

Deb - hope it goes well!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
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Re: Spinal Stimulator

Post by debbluebird »

It hasn't been easy. I am now off methadone. I have another few days before it is totally out of my body but I think the worst withdrawals are over. I was up all night Wednesday but I feel better today. I know it wouldn't be easy.
I had to add back gabapentin but only 600 mg am and pm. I have been on a higher dose of that before. I think I will decrease that when I can. Stimulator was adjusted at pain Doctors appt today. Things are good !

ViewsAskew
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Re: Spinal Stimulator

Post by ViewsAskew »

debbluebird wrote:
Fri Mar 19, 2021 9:26 pm
It hasn't been easy. I am now off methadone. I have another few days before it is totally out of my body but I think the worst withdrawals are over. I was up all night Wednesday but I feel better today. I know it wouldn't be easy.
I had to add back gabapentin but only 600 mg am and pm. I have been on a higher dose of that before. I think I will decrease that when I can. Stimulator was adjusted at pain Doctors appt today. Things are good !

YAY!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Spinal Stimulator

Post by badnights »

Now you will have some peace in your life
- BIG HUG -
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

debbluebird
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Re: Spinal Stimulator

Post by debbluebird »

This is not an easy thing to go through, but it is worth it to me. We are still working out which program and level will work best for me. It is getting better. It through a monkey wrench into everything when It weaned off the methadone.

ViewsAskew
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Re: Spinal Stimulator

Post by ViewsAskew »

I can imagine that getting off the methadone has been a bit troublesome!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
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Re: Spinal Stimulator

Post by debbluebird »

Spinal Cord Stimulation for Restless Legs Syndrome: Case Series and Mechanistic Hypothesis
Abstract

Background: Spinal cord stimulation (SCS) is a well-established therapy for chronic pain syndromes, with growing applicability to other conditions. Restless legs syndrome (RLS) is a widespread, chronic movement disorder managed primarily and incompletely by medication, and its etiology can be classified as idiopathic or secondary.

Methods: Three patients underwent SCS implantation for chronic back and/or leg pain with concomitant targeting of RLS: (1) a 34-year-old man with sporadic RLS symptoms that strongly intensified after military-related spinal fractures, (2) a 54-year-old man with RLS likely secondary to meralgia paresthetica, and (3) a 42-year-old man with low back and right lower extremity pain after a military motor vehicle accident.

Results: Continuing through 40-month, 2-month, and 28-month follow-ups, respectively, the patients experienced exemplary relief of their RLS symptoms. Notably in the case of patient 1, this benefit appears separate from his pain relief, as during the 5-month period directly after surgery but before adjusted targeting, he only experienced pain alleviation.

Conclusions: To our knowledge, this is the first reported case of using SCS as a potentially long-lasting, safe, and highly effective therapy for RLS of mixed etiology. Additionally, 2 patients with RLS possibly secondary to chronic pain also benefited from the therapy. This success may be due to increased inhibition from hypothalamic cells controlling dopaminergic input to the spine.

Keywords: Chronic pain; Neuromodulation; Restless legs syndrome; Spinal cord stimulation.

Link:
https://pubmed.ncbi.nlm.nih.gov/3094722 ... %20therapy.

I wanted to share.

Polar Bear
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Re: Spinal Stimulator

Post by Polar Bear »

Debbluebird - Thank you for this, it is always good to hear of some positives.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: Spinal Stimulator

Post by ViewsAskew »

debbluebird wrote:
Fri Apr 09, 2021 2:46 am
Spinal Cord Stimulation for Restless Legs Syndrome: Case Series and Mechanistic Hypothesis
Abstract

Background: Spinal cord stimulation (SCS) is a well-established therapy for chronic pain syndromes, with growing applicability to other conditions. Restless legs syndrome (RLS) is a widespread, chronic movement disorder managed primarily and incompletely by medication, and its etiology can be classified as idiopathic or secondary.

Methods: Three patients underwent SCS implantation for chronic back and/or leg pain with concomitant targeting of RLS: (1) a 34-year-old man with sporadic RLS symptoms that strongly intensified after military-related spinal fractures, (2) a 54-year-old man with RLS likely secondary to meralgia paresthetica, and (3) a 42-year-old man with low back and right lower extremity pain after a military motor vehicle accident.

Results: Continuing through 40-month, 2-month, and 28-month follow-ups, respectively, the patients experienced exemplary relief of their RLS symptoms. Notably in the case of patient 1, this benefit appears separate from his pain relief, as during the 5-month period directly after surgery but before adjusted targeting, he only experienced pain alleviation.

Conclusions: To our knowledge, this is the first reported case of using SCS as a potentially long-lasting, safe, and highly effective therapy for RLS of mixed etiology. Additionally, 2 patients with RLS possibly secondary to chronic pain also benefited from the therapy. This success may be due to increased inhibition from hypothalamic cells controlling dopaminergic input to the spine.

Keywords: Chronic pain; Neuromodulation; Restless legs syndrome; Spinal cord stimulation.

Link:
https://pubmed.ncbi.nlm.nih.gov/3094722 ... %20therapy.

I wanted to share.
Only an n of 3, but great results. Hope they keep trying it. Seems that this would be wonderful for a certain subset of folk.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: Spinal Stimulator

Post by badnights »

wow. Wonder if it would be effective for any of us who don't have a known spinal injury.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Spinal Stimulator

Post by debbluebird »

I don't have a spinal injury. I have osteoarthritis which has affected my spine.
This is a gamble but worth a try. I had to adjust my stimulator several times before finding the right place. The reps work close with me. Last night wasn't so great for me but then the two previous nights, I slept all night. My condition changes constantly. If I can get more good night's than not so good nights, it was worth it to me.

badnights
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Re: Spinal Stimulator

Post by badnights »

I don't have a spinal injury.
I didn't mean a traumatic blunt-force type of injury. The osteoarthritis is a type of injury. I'm so glad it's effective for you, hopefully there will be way more good nights than bad.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

debbluebird
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Joined: Mon May 21, 2012 3:27 pm

Re: Spinal Stimulator

Post by debbluebird »

I think I finally found the right balance. When they put the stimulator in, they set it at Program 1 Level 4. I am now on Program 3. At first we tried turning up the level with each program. Finally figured out, I was being over stimulated. I was turned down to Level 3. Then we tried turning it down to Level 2 at night and turning it back up to Level 3 during the day. It worked !
Over stimulation felt like RLS with strong spasms. The RLS feeling was the worst. It was constant at times.
Last night during the evening and all night there was no RLS feelings, and no spasms. I know this was just one night, but I really think this will continue to work.
It's that feeling of feeling nothing going on in your body when you relax and get sleepy. That feeling doesn't happen often. Before it only happened when I increased meds, or took extra meds.
Like I said before, it wasn't an easy process of trial and error, but it has been worth it. I hope my experience will help others. I am not the only one trying this option to help RLS. My Rep has told me that there are others with RLS who have a spinal stimulator.

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