Restless Legs Syndrome (RLS) Discussion Board

I'm having new issues since stopping the muscle relaxants. I'm not having as many good nights. Plus I am not sure if the THC gummies are really helping that much.
Oh how I wish there was something else to add to my arsenal. When I have one bad night, where I'm up all night, it is really taking a toll on me, more so than ever before. I know that the spinal stimulator helps, it's just not 100 %. There seems to be a fine line of it working and not working.
I wish there was some new miracle drug.

debbluebird wrote: ↑

Thu Aug 12, 2021 10:31 pm

I'm having new issues since stopping the muscle relaxants. I'm not having as many good nights. Plus I am not sure if the THC gummies are really helping that much.
Oh how I wish there was something else to add to my arsenal. When I have one bad night, where I'm up all night, it is really taking a toll on me, more so than ever before. I know that the spinal stimulator helps, it's just not 100 %. There seems to be a fine line of it working and not working.
I wish there was some new miracle drug.

I hear you about the miracle drug

I think I'm still a ways out before I resort to a spinal stimulator
... too many cons and logistical problems to justify the procedure at this point
Becoming another child for my wife to take care of through a fourth wave a covid just won't be possible .

I definitely did have a great discussion with the surgeon who would potentially be cutting me open .
He referred me to the top RLS doctor at Sunnybrook in Toronto (arguably the top doctor in Canada who actively treats difficult cases such as ours)

... of course with everything going on in the world , my referral has seemed to fall through the cracks and I'll need to follow up this week.

I did however find some temporary MIRACLE RELIEF through a phenomena known as FRISSON
... the scientific term for the chills you get from listening to familiar emotion provoking MUSIC

I'm not kidding Deb

Find some favorite old music from your youth and press play
(Or find a record player / 8track etc)

My only problem , and likely everyone's problem will be that the amount of media isn't infinite, and the effect wears off after listening to the same thing repeatedly

With that said.... find some music from your youth and listen to it a few hours leading up to bedtime .
I've done it every night for 5 weeks and it has provided the best results for my RLS since my Mirapex starting turning on me perhaps 4-5 years ago

Try it !

[/quote]

I hear you about the miracle drug

I think I'm still a ways out before I resort to a spinal stimulator
... too many cons and logistical problems to justify the procedure at this point
Becoming another child for my wife to take care of through a fourth wave a covid just won't be possible .

I definitely did have a great discussion with the surgeon who would potentially be cutting me open .
He referred me to the top RLS doctor at Sunnybrook in Toronto (arguably the top doctor in Canada who actively treats difficult cases such as ours)

... of course with everything going on in the world , my referral has seemed to fall through the cracks and I'll need to follow up this week.

I did however find some temporary MIRACLE RELIEF through a phenomena known as FRISSON
... the scientific term for the chills you get from listening to familiar emotion provoking MUSIC

I'm not kidding Deb

Find some favorite old music from your youth and press play
(Or find a record player / 8track etc)

My only problem , and likely everyone's problem will be that the amount of media isn't infinite, and the effect wears off after listening to the same thing repeatedly

With that said.... find some music from your youth and listen to it a few hours leading up to bedtime .
I've done it every night for 5 weeks and it has provided the best results for my RLS since my Mirapex starting turning on me perhaps 4-5 years ago

Try it !
[/quote]

Thanks. We changed my programing again and my nights are now better. I'm sleeping again.

I am now having more good nights than bad nights. I'm having 5 and 6 nights in a row of good sleep. I feel that we finally have it set correctly. Since July 28th, only about 4 nights that weren't so good. The best has been the last two weeks.

It has taken a lot of grit and determination for you to reach this point. You didn't give up. Well done.

debbluebird wrote: ↑

Wed Aug 25, 2021 1:30 am

I am now having more good nights than bad nights. I'm having 5 and 6 nights in a row of good sleep. I feel that we finally have it set correctly. Since July 28th, only about 4 nights that weren't so good. The best has been the last two weeks.

How is the quality of sleep? Very refreshing? Or, mediocre?

I'm starting to feel good again. My sleep will never be like it was before RLS, but most nights I'm getting 8 hours. So what I'm saying is, I'm getting about 90% to 95% relief. The RLS is not totally gone, but it is so mild, it's easy to tolerate. I used to get severe spasms. They are gone. My RLS was so severe that the RLS became spasms.

debbluebird wrote: ↑

Sun Aug 29, 2021 5:25 pm

I'm starting to feel good again. My sleep will never be like it was before RLS, but most nights I'm getting 8 hours. So what I'm saying is, I'm getting about 90% to 95% relief. The RLS is not totally gone, but it is so mild, it's easy to tolerate. I used to get severe spasms. They are gone. My RLS was so severe that the RLS became spasms.

That is so awesome, Deb.

Last night I didn't have any RLS. Didn't even need the THC gummies.

So good. It just gets better.

debbluebird wrote: ↑

Sun Aug 29, 2021 5:25 pm

I'm starting to feel good again. My sleep will never be like it was before RLS, but most nights I'm getting 8 hours. So what I'm saying is, I'm getting about 90% to 95% relief. The RLS is not totally gone, but it is so mild, it's easy to tolerate. I used to get severe spasms. They are gone. My RLS was so severe that the RLS became spasms.

That's so good to hear. I hope more research is done into spinal stimulation for WED/RLS.

This is definitely a positive step in the right direction for treating extremely severe refractory cases of RLS .

Deb, it's good to hear that you are getting such an impressive degree of relief.

I have had a Medtronic Neurostimulator for the pain of failed back surgeries for the past 10 years. When the last one was replaced due to the batteries being depleted, I discussed my Restless Legs with the Tech from the company that made the unit and asked about using it to help control the Restless Legs. I have met with the Tech to try to "arrange" the perameters of the controller to what the wiring that is already in me will allow to see if it can go low enough into my legs to help with the RLS. It can not go that low into my legs. Although he did show me what to do to try adjusting it myself to try to alleviate some of the sensations at the top of my legs, as I am experiencing them. Sometimes i does and sometimes it does not. No reason for either. But I will watch your results and keep talking to the tech I work with along with my Pain Doctor and my Neurologist to see if this could be an option to add more wires to this controller or if I would have to get a second one implanted???? Can I ask what brand you are being tested with? Is it possible to get (off the blog if necessary) your name and your doctor's name and contact information for reference for my doctors?

RLSandra wrote: ↑

Thu Sep 16, 2021 1:23 am

I have had a Medtronic Neurostimulator for the pain of failed back surgeries for the past 10 years. When the last one was replaced due to the batteries being depleted, I discussed my Restless Legs with the Tech from the company that made the unit and asked about using it to help control the Restless Legs. I have met with the Tech to try to "arrange" the perameters of the controller to what the wiring that is already in me will allow to see if it can go low enough into my legs to help with the RLS. It can not go that low into my legs. Although he did show me what to do to try adjusting it myself to try to alleviate some of the sensations at the top of my legs, as I am experiencing them. Sometimes i does and sometimes it does not. No reason for either. But I will watch your results and keep talking to the tech I work with along with my Pain Doctor and my Neurologist to see if this could be an option to add more wires to this controller or if I would have to get a second one implanted???? Can I ask what brand you are being tested with? Is it possible to get (off the blog if necessary) your name and your doctor's name and contact information for reference for my doctors?

I have the Nevro HF10. My leads go up my back near my spine. They target nerves that go to my legs. They do not literally into the legs. I have a low back fusion and Osteoarthritis. I have several bulging discs. I'm in New Mexico, but I know they are all over.