Thank you for this, Deb.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.
Spinal Stimulator
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Re: Spinal Stimulator
Beth - Wishing you a restful sleep tonight
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Re: Spinal Stimulator
Yes Deb, thanks for this indeed !badnights wrote: ↑Thu Apr 29, 2021 6:14 amThank you for this, Deb.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.
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 !
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Re: Spinal Stimulator
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.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 !
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.
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Re: Spinal Stimulator
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.
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Re: Spinal Stimulator
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 needsdebbluebird wrote: ↑Mon May 03, 2021 3:02 pmI 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.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 !
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.
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
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Re: Spinal Stimulator
Deb, can you adjust the level yourself or do you have to get them to do it?debbluebird wrote: ↑Fri May 28, 2021 7:57 amI 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.
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.
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Re: Spinal Stimulator
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.
All is good.
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Re: Spinal Stimulator
Nice
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.
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Re: Spinal Stimulator
Hi Deb. Hadn't visited the forum for a while and was excited to see this thread. I know how precious any degree of relief and good sleep is. Hope your relief becomes even more sustained. You have certainly paid your dues.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c
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Re: Spinal Stimulator
How are things Deb ??
You are the only person I know using this for relief
As the mods know , no news is often good news
I have my first appointment with the surgeon in a week (July 9th)
.... likely just to get the finer details of the procedure and be armed with information if stronger opioids are unbearable
You are the only person I know using this for relief
As the mods know , no news is often good news
I have my first appointment with the surgeon in a week (July 9th)
.... likely just to get the finer details of the procedure and be armed with information if stronger opioids are unbearable
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Re: Spinal Stimulator
The results are up and down just like my legs. I have good nights and not so good nights. The Stimulator helps with my day time back pain. At first it worked well at night. Then I became over stimulated. I had nonstop RLS which was very different than my usual symptoms.
I am in constant contact with the reps. They have reduced the stimulation by changing the programs. I am sleeping better than I did before the placement. I still need meds, but not as much. I see the rep in person again on Wednesday. She wants to adjust the programs again. I believe it is another tool for RLS.
I used to suffer from spasms which are now gone. I believe that my RLS was so severe, they went from regular RLS to spasms. When I have symptoms now, the are very mild RLS. I am grateful the spasms are gone.
I am in constant contact with the reps. They have reduced the stimulation by changing the programs. I am sleeping better than I did before the placement. I still need meds, but not as much. I see the rep in person again on Wednesday. She wants to adjust the programs again. I believe it is another tool for RLS.
I used to suffer from spasms which are now gone. I believe that my RLS was so severe, they went from regular RLS to spasms. When I have symptoms now, the are very mild RLS. I am grateful the spasms are gone.
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Re: Spinal Stimulator
I am still taking Gabapentin 1800 mg every night. I stopped the muscle relaxants, but I am also taking 2 THC gummies.
The rep has changed my program several times. I believe we are getting close. I've had 3 good nights in a row now.
The rep has changed my program several times. I believe we are getting close. I've had 3 good nights in a row now.
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Re: Spinal Stimulator
Great news that you are making progress. There is always hope.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
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Re: Spinal Stimulator
Three good nights in a row, sounds like heaven -
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
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Re: Spinal Stimulator
That is SO awesome!
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.
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.