Any luck with a sleep study?

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.]
Stainless
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Any luck with a sleep study?

Postby Stainless » Tue Nov 27, 2018 2:00 pm

When I asked my doctor about pain in my thighs during bad bouts of rls she referred me to a neurologist. I've been seeing this doctor for years and talked many times about thigh pain and periodic limb movement for which I was prescribed gabapentin. Now apparently is the time to see a neurologist. I've seen rls specialists twice on my own and gained nothing that helped. I'm back on the same clonazepam I've been taking for 20+ years.

So my wife is on me to do this and do a sleep study they will most likely recommend. I have zero confidence this will help anything, but am sure I will be beaten into submission. Does anyone have anything good to say about sleep studies?

Rustsmith
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Re: Any luck with a sleep study?

Postby Rustsmith » Tue Nov 27, 2018 4:13 pm

The potential benefit of a sleep study all depends upon what the doctor is hoping to find from the study. If the sole purpose is to determine whether you have sleep apenea or PLMS, then you may not derive much benefit. My last sleep study was done because my doctor wanted to find out whether the DA that I was taking (along with gabapentin and an opioid) was controlling the frequent PLMS that was measured in my first study. Even though I aborted the study at 2AM when I couldn't get back to sleep, the study was a success because she confirmed that PLMS was not the cause of my sleep problems. As a result, she now firmly supports my use of edible marijuana even though she cannot actually tell me to use it.

The doctor who ran my first sleep study provided me with baseline PLMS data as well as diagnosed me with a specific type of sleep apnea (UARS), but I highly suspect a lot of what he was hoping to do was collect the info necessary to lease/purchase a CPAP machine that would be paid for by my insurance. That did not happen since I was prepared for that "recommendation".
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: Any luck with a sleep study?

Postby ViewsAskew » Tue Nov 27, 2018 9:59 pm

Yes.

As Steve said, it isn't so much about the RLS - that isn't at issue - but about the PLMs and the other sleep issues. It also provides legitimacy to some doctors that you actually DO have an issue.
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: Any luck with a sleep study?

Postby debbluebird » Wed Nov 28, 2018 5:53 am

I was reluctant to have a sleep study. I had had RLS for 10 years, when they wanted me to have a sleep study. They found I had sleep apnea. They told me that untreated sleep apnea made RLS worse, plus my legs also moved a lot during sleep. It took me a long time to get used to wearing a mask. I could never stand the plastic feel of the mask on my face. I would sweat and then it would leak. You have to have a good fit. I now wear a soft material cut the shape of the mask to fit between the mask and my face. I bought a soft T shirt and cut it to fit. They do wear out, so I have cut many.
Also, if a person has sleep apnea and chooses not to treat it, it causes other health issues, heart disease.
Good luck to you.

2BassetMom
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Re: Any luck with a sleep study?

Postby 2BassetMom » Thu Nov 29, 2018 10:14 am

I have had 2 sleep studies, one in San Diego at my specialists and one up here in Idaho with a local sleep/neurologist. The first was done to observe my rls and see what else was going on. I was found to have sleep apnea. My doctor up here wanted one to determine if my opioids would adversely affect the efficiency of the c-pap machine. I wore a small mask in the latest study, first time, and it wasn't as bad as I had expected. He was pleased with the results and is having me continue with my current rls meds: OxyContin CR, oxycodone and Neupro Patch. He also said that if the apnea is treated I could see a remarkable lessening of my rls. I am glad that I did the study.

Stainless
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Re: Any luck with a sleep study?

Postby Stainless » Fri Nov 30, 2018 8:59 pm

I just bought a Trail Camera that turns on by sensing motion. It has LED infrared lights and only cost about $60. I doubt the doctors will be interested but I've always wondered what goes on after I go to sleep. I think I'll put a sheet of cardboard in front until I'm feeling like I might fall asleep or it will record the rocking and rolling I do for a half hour before sleep. I know what that looks like.

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Re: Any luck with a sleep study?

Postby stjohnh » Fri Nov 30, 2018 10:55 pm

2BassetMom wrote:I have had 2 sleep studies,.../ He also said that if the apnea is treated I could see a remarkable lessening of my rls. I am glad that I did the study.


Hmmm. I hope he is right, but I think there is not good scientific evidence that treating sleep apnea improves RLS.
Blessings,
Holland

ViewsAskew
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Re: Any luck with a sleep study?

Postby ViewsAskew » Sat Dec 01, 2018 1:36 am

stjohnh wrote:
2BassetMom wrote:I have had 2 sleep studies,.../ He also said that if the apnea is treated I could see a remarkable lessening of my rls. I am glad that I did the study.


Hmmm. I hope he is right, but I think there is not good scientific evidence that treating sleep apnea improves RLS.


From what I have read, it doesn't help with primary RLS. It can help with PLMs that occur because of the apnea.
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.

Rustsmith
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Re: Any luck with a sleep study?

Postby Rustsmith » Sat Dec 01, 2018 3:39 am

The way that my sleep doctor explained it, RLS/PLMS and sleep apnea to two separate sleep disorders. However, their effect upon your sleep is cumulative. If PLMS has you experiencing micro-awakenings ever 10 minutes and sleep apnea hits half way in between, that means that your sleep level rarely gets below Level 1 because you are continually waking up (even though you are not aware of it). By treating the sleep apena, you get rid of half of those awakenings so you sleep is improved. It doesn't get back to normal, but at least you get more sleep than before.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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: Any luck with a sleep study?

Postby badnights » Sat Dec 01, 2018 5:59 am

Also anything that lessens your physiological stress ought to improve your WED. Treating sleep apnea should allow you to get more restorative sleep, helping to break the vicious circle of less sleep making your WED worse. Or so the theory goes. For myself, I do get worse symptoms when I'm worn down.
Beth - Wishing you a restful sleep tonight
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sleepdancer2
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Re: Any luck with a sleep study?

Postby sleepdancer2 » Sat Dec 01, 2018 3:13 pm

A sleep study can give the doctors justification for treatment. It can also let one know how severely their sleep is affected, and having that information can help with making treatment decisions. For mild movements with few arousals or sleep stage disruption, the risk of some of the meds may be greater than the benefit. If things are really bad, you know you must make some tough decisions. The difficult thing about having both obstructive sleep apnea and periodic limb movements is that they can mask each other in a study. One night shouldn't be taken as your final answer. There are limb movements that can be associated with the struggle to breathe. These should be helped treating the sleep apnea. The periodic limb movements from other causes don't have too good of a record of responding to CPAP treatment. If one shows both the apnea and limb movements during a study, be aware that treating either one may result in more or better sleep, thus allowing the untreated one to more fully manifest and worsen sleep again, just in a different way. It's possible that each of your diagnoses would have been ranked more severe had they been the only one present. My movements were diagnosed and treated first. Once my legs weren't waking me up as much, the snoring and other symptoms of sleep apnea worsened. Once I went on CPAP, my limb movements worsened. It was like a game of cat and mouse. It's not that one makes the other better or worse, just a matter of how much sleep one is getting. My personal opinion is any suggestion of sleep disordered breathing should be thoroughly assessed. Not doing so for many years nearly killed me. When the doctors said my left ventricle was becoming enlarged and my brain had lesions from the lack of oxygen, I took it real serious. Don't expect most doctors to even think about the possible interactions of OSA and PLMD. I've spent so many nights (10?) in sleep labs. It was in laying my results side by side and looking for patterns that the light bulb went on for me. It was later confirmed by looking up studies on PubMed that I saw the term masking and knew I was onto something.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Stainless
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Re: Any luck with a sleep study?

Postby Stainless » Sun Dec 02, 2018 1:37 pm

I've found that distraction is the only thing that can eliminate RLS for days or even up to a week. A vacation sometimes works but not always. I was just up helping family with hurricane damage and I hardly had a twinge for nearly a week. The week before it was bad as it gets and I actually through my knee out, I assume from PLMS, and was limping around a few days. My doctor says RLS and PLMS are different diseases, but I don't buy that. I think one is just an extension of the other.

I figure if I go to a sleep clinic, the distraction will either help or I will just be up all night. I've been told I snore but not much, who doesn't. But I'm sure if I do during the study they will try to throw a CPAP on me.

debbluebird
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Re: Any luck with a sleep study?

Postby debbluebird » Mon Dec 03, 2018 12:55 am

Distraction must eliminate your stress. Srtess contributes to RLS.

sleepdancer2
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Re: Any luck with a sleep study?

Postby sleepdancer2 » Mon Dec 03, 2018 6:32 am

Stainless wrote:... I actually through my knee out, I assume from PLMS.... My doctor says RLS and PLMS are different diseases, but I don't buy that. I think one is just an extension of the other. I figure if I go to a sleep clinic, the distraction will either help or I will just be up all night. I've been told I snore but not much, who doesn't. But I'm sure if I do during the study they will try to throw a CPAP on me...

I've heard RLS and PLMS referred to as "cousins". I've seen stats on here of the percentages of people with only one or the other vs with both. Still much left to understand about them. They differ in the way they manifest. RLS movements are considered voluntary, a response to uncomfortable sensations. But I swear, at times the need to move gave me no choice in the matter. PLMS movements are termed involuntary, ryhthmic, and stereotypical. They are patterned. RLS does not produce those patterns. It makes sense they are somehow related since the same treatments seem to help whether RLS or PLMS.

Are your leg movements secondary to medication or are you experiencing augmentation? In watching video of my sleep movements while augmenting, during one particularly wild flailing I woke up groaning "Owwww!" loudly and grabbed my knee. Like you, I believe some of my joint damage is a result of my limb movements.

As to the snoring and a sleep study. Diagnosis of sleep apnea is very fact based, derived from definitive measurements and hard data. It is easy to get a false negative or an underappreciated result due to poor sleep, but short of having an outright crook lying about the data, a false positive is highly unlikely. The reason it seems like nearly everyone we hear about who goes for a sleep study gets diagnosed with sleep apnea is because sleep study patients generally need to have symptoms possibly attributable to sleep disorders to get referred for a study. It's a stacked deck. There are people who snore who do not have sleep apnea. Their tissues may get a bit lax and make the flappy noises, but not enough to compromise air flow. There are people who don't snore who do have sleep apnea. Their airway may be fine one minute then have an area suddenly collapse and compromise breathing. If one is a skeptic, I would suggest asking for the details of the study report before pursuing treatment to see in black and white how a diagnosis was derived. Sadly. those with OSA and PLMS may find their conditions under appreciated. Once the OSA is treated, the best followup is another sleep study while sleeping with CPAP at the proven effective pressure and seeing how the legs have responded. That can be hard to get a doctor to go along with since the 2 traditional studies are simply a diagnostic study without CPAP, and a titration study to determine CPAP pressure. I did have a sleep doctor who was on the cutting edge of treatment and ordered the 3rd option for me twice.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

Stainless
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Re: Any luck with a sleep study?

Postby Stainless » Tue Dec 04, 2018 6:00 pm

I've been on clonazepam for over 20 years. I read I should get off that benzo so after six months of reducing 2.5 mg dose I got off using Gabapentin. My RLS (thigh pain and probably PLMS) went 24/7. I tried the DAs and long lasting DAs and after a short good time, things just got worse with significant pain in my thighs and just a really bad year. I went back on clonazepam and now my RLS is about back to before but the pain in my thighs continues and seems to be worse. That's why my doctor finally wants to refer me to a neurologist and hence my question about sleep studies.

My RLS seems to react positively to stress or what I call distraction. My life is very stress free, but going out to dinner with people can eliminate or delay the onset. Travel can make it disappear for a week, but not always. And since I'm back on clonazepam I sleep pretty well and am not tired during the day. I think a higher dose than the 2 mg would help but understand it may be best to leave that option for later if things get worse. The pain can be quite severe. The other night it was so bad a midnight I filled the tub with 6 inches of very hot water and it disappeared. But that does not always work. Rocking my legs has been my solution since I was 15, but don't think that is PLMS. Thanks for all the insight. I'll try to keep and open mind.


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