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.]
badnights
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Re: Spinal Stimulator

Post by badnights »

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.
Thank you for this, Deb.
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Icantsleep
Posts: 194
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Spinal Stimulator

Post by Icantsleep »

badnights wrote:
Thu Apr 29, 2021 6:14 am
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.
Thank you for this, Deb.
Yes Deb, thanks for this indeed !

Long term , this may be my best answer (especially if/when my rls progresses further)
I have been referred for a trial , but at this time covid and other things have delayed this indefinitely.

Keep the updates coming please !

debbluebird
Posts: 2221
Joined: Mon May 21, 2012 3:27 pm

Re: Spinal Stimulator

Post by debbluebird »

Yes Deb, thanks for this indeed !
Long term , this may be my best answer (especially if/when my rls progresses further)
I have been referred for a trial , but at this time covid and other things have delayed this indefinitely.

Keep the updates coming please !
I had two trials. Most people have one. They last a week. The hard part about the trial is no showers. So it's sponge bath time. Also you have the same restrictions as the permanent one. No bending, lifting, twisting, reaching, etc. I had my Sister wash my hair, like you would in a beauty salon in a chair. You can't bend over into a sink to wash your hair. You just don't want those leads to move. Everything on the outside is taped to you and you carry the equipment around your waist.
With the permanent one the restrictions last 2 months. No showers is only a couple of days, as it has to heal. The restrictions are so important because again, you don't want those leads to move. I had help from my family. My Daughter changed the bed linens and cleaned my house.
It took a few days for the battery site area to heal and not be very sore. Ice helped a lot.
The reason the restrictions last so long is that everything needs to heal. It helps the leads stay in place, with scar tissue.
I am glad I am off methadone. Right now I am on Program 3, Level 3 during the day and level 2 at night. A lot of RLS patients are doing that, alternating. Being at a lower level, and then even turning it down more at night. I think for people in severe pain, they use the higher levels.
For me the higher levels caused more RLS. They call that being over stimulated. That was very uncomfortable. I never had RLS that bad before. Turning the level down stopped the RLS. Right after surgery they start you at level 4.
Also as your body gets used to the whole thing you tend to not need as much stimulation.
Good luck.

debbluebird
Posts: 2221
Joined: Mon May 21, 2012 3:27 pm

Re: Spinal Stimulator

Post by debbluebird »

I have to be honest. It has not been going well lately. They told me that after awhile you don't need as much stimulation. That seems to be true. Over stimulation seems to cause continuous RLS for me. I did have some good weeks where I slept every night. I am still optimistic.

Icantsleep
Posts: 194
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: Spinal Stimulator

Post by Icantsleep »

debbluebird wrote:
Mon May 03, 2021 3:02 pm
Yes Deb, thanks for this indeed !
Long term , this may be my best answer (especially if/when my rls progresses further)
I have been referred for a trial , but at this time covid and other things have delayed this indefinitely.

Keep the updates coming please !
I had two trials. Most people have one. They last a week. The hard part about the trial is no showers. So it's sponge bath time. Also you have the same restrictions as the permanent one. No bending, lifting, twisting, reaching, etc. I had my Sister wash my hair, like you would in a beauty salon in a chair. You can't bend over into a sink to wash your hair. You just don't want those leads to move. Everything on the outside is taped to you and you carry the equipment around your waist.
With the permanent one the restrictions last 2 months. No showers is only a couple of days, as it has to heal. The restrictions are so important because again, you don't want those leads to move. I had help from my family. My Daughter changed the bed linens and cleaned my house.
It took a few days for the battery site area to heal and not be very sore. Ice helped a lot.
The reason the restrictions last so long is that everything needs to heal. It helps the leads stay in place, with scar tissue.
I am glad I am off methadone. Right now I am on Program 3, Level 3 during the day and level 2 at night. A lot of RLS patients are doing that, alternating. Being at a lower level, and then even turning it down more at night. I think for people in severe pain, they use the higher levels.
For me the higher levels caused more RLS. They call that being over stimulated. That was very uncomfortable. I never had RLS that bad before. Turning the level down stopped the RLS. Right after surgery they start you at level 4.
Also as your body gets used to the whole thing you tend to not need as much stimulation.
Good luck.
I'm really not sure how the heck I'd be able to do this with a soon to be 5 year old and a recently turned 3 year old with special needs
It is a battle for my wife and I (and my mother) from the moment my kids wake up until they go to sleep

I need to be able to move without restriction

My wife and aging mother simply cannot take care of yet another person
(mom ironically has severe back pain and needs to take care of my dad as well )

Here's to hoping a new med for augmentation comes out

Nothing helps me like a DA

You didn't happen to try a Kailo or Quell prior to the implant ??
I could obviously tolerate either of those

badnights
Moderator
Posts: 5964
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Spinal Stimulator

Post by badnights »

debbluebird wrote:
Fri May 28, 2021 7:57 am
I have to be honest. It has not been going well lately. They told me that after awhile you don't need as much stimulation. That seems to be true. Over stimulation seems to cause continuous RLS for me.
Deb, can you adjust the level yourself or do you have to get them to do it?
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
Posts: 2221
Joined: Mon May 21, 2012 3:27 pm

Re: Spinal Stimulator

Post by debbluebird »

I am in constant contact with the reps, but if in the middle of the night I need to adjust it, I do. I just let them know in the morning. They need to keep the records. I believe I am at a good setting now. Unless something happens, I will leave it where it is. Last night I slept 4 hours, was up two because I was just awake and slept 4 more. No RLS or spasms.
All is good.

badnights
Moderator
Posts: 5964
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Spinal Stimulator

Post by badnights »

Nice
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.

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