CPAP

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.]
sleepdancer2
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Re: CPAP

Postby sleepdancer2 » Tue Jul 15, 2014 9:16 am

doety wrote: ...after i began taking Methadone, I got another sleep test... I had now progressed to "central" Sleep Apnea and sent me an oxygen concentrator -- It has a thin tube of 100 oxygen that I put in my CPAP...

Doety, I'm wondering if they also changed your machine type after the diagnosis of CSA? Usually the type of machine for Obstructive Sleep Apnea (OSA) will not treat CSA. What machine are you using? EDIT. Just for clarification, machines for CSA will also treat OSA, just not the other way around.
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pab628
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Re: CPAP

Postby pab628 » Thu Apr 30, 2015 3:36 pm

I recently was prescribed an "at home" apnea test. My results show mild apnea and now the lab wants me to come in for an all nighter (maybe 2). At first I agreed. Then I cancelled. Not sure this is going to help and I think a mask would keep me from sleeping. Anyway, I had a missed call from my neurologist yesterday. I was at the low end of the apnea scale, normal pulse and saturation was 87 (normal is 90). I assume my neurologist is going to quiz me on why I cancelled. I did some research, talked with 2 women who use/used CPAP and soul searching on this. But, I'd like some opinions, here.

Rustsmith
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Re: CPAP

Postby Rustsmith » Thu Apr 30, 2015 4:19 pm

There are a couple of reasons why you should go ahead and do the lab test now that the home test has provided borderline results.

1. Because you have RLS, you probably also have PLMS (periodic leg movements during sleep). If you do, then the RLS/PLMS can cause microawakenings that could appear to be awakenings due to sleep apnea. The cause of each awakening can only be determined for certain by correlating the increased inputs used in the lab (as opposed to the home unit).
2. There are several "types" of sleep apnea. A mild form is known as UARS (Upper Airway Restriction Syndrome). UARS causes sleep interruptions just like classic sleep apnea, but does not result in the oxygen desaturations. Treatment for UARS is often CPAP. A proper diagnosis of UARS cannot be done with any of the current home sleep test units.
3. It does not take very much time asleep for the lab technicians to get a valid set of results. I had the 2 night test. The first night I got about 4 hrs of sleep. The second night, I probably got about 2 hrs between all the mask changes and fittings (I didn't think I slept at all!). But that was sufficient for the techs to confirm that the CPAP had reduced my AHI and that they had finally selected the proper mask for me.

Since that time I have found out that my sleep doctor fudged my results a bit so that my AHI score would satisfy my insurance company's requirements for CPAP. Maybe this was done in the hope that I would buy my machine from the supplier in his office (I didn't). But I continue to use the machine anyway because my wife says that it has completely stopped my snoring.
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: CPAP

Postby ViewsAskew » Thu Apr 30, 2015 5:42 pm

agree particularly with Steve's #1 above. My first study showed microawakenings that were attributed to apnea, but when the neuro read it, he said that the techs were incorrect in assuming I had apnea - I didn't have any.

This can rule apnea OUT for you and show that the leg movements are the real 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.

pab628
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Re: CPAP

Postby pab628 » Tue May 05, 2015 11:16 am

Well, I did it. Made the appointment for the "overnighter". It will be June 16. Scared (a) I won't sleep, (b) I'll have to wear a d*mn mask after it's all said and done. I just do not want to leave anything unchecked that could help my RLS.

ViewsAskew
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Re: CPAP

Postby ViewsAskew » Wed May 06, 2015 3:43 am

I didn't sleep a lot, but I slept enough for them to get data and more than I expected in the second study. I couldn't sleep until around 2 AM, but I slept most of the time until they awakened me at 6 AM. My second test, I asked if they could admit me later and let me sleep later. They agreed. Since my normal sleep hours are from 2-4 AM until 11 to 2 PM, it seemed only fair to test me "all night" as they do patients who sleep "normal" hours.
Ann - Take what you need, leave the rest



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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.

sleepdancer2
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Re: CPAP

Postby sleepdancer2 » Thu May 07, 2015 1:35 am

Have had several sleep studies. Regarding CPAP, if your provider is not in tune to helping people succeed, it's harder to be successful. My first sleep doctor did as much harm as good, but a good sleep doctor is worth their weight in gold. While CPAP treatment wouldn't be my desire for my life, let me tell you that treating my sleep apnea is the best thing I ever did for myself. It was the beginning of my health turnaround. I've made peace with the machine. How it might affect your legs remains to be seen, but your need to treat the OSA is independent of whether your legs gets worse or better on CPAP. Separate issues. BTW, an oxygen reading of 90 is not normal. If you drop much below 90 in the hospital alarms will go off and they'll put oxygen on you. Even in your test you dropped to the point of needing oxygen. Who knows how many times a night that is happening. Also, what you don't know is if your study captured you in REM sleep while supine - generally considered the worst case scenario. Your apnea may not be as mild as this one limited study indicates. Too little information to be certain. Also, if your legs are causing arousals, then it's a pretty sure bet once your legs are quiet more apneas would show up. I think making an appointment for the lab study was wise. Do get a detailed copy of all test results. Hey, if it turns out your apnea is indeed mild, maybe you'll find it is strictly positional and side sleeping would help, or that a dental device would suffice. All hope is not yet lost on not wearing a mask. :)
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pab628
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Re: CPAP

Postby pab628 » Thu May 07, 2015 12:41 pm

Thank you sleepdancer2. My average Oxygen saturation was 94%. Some of the results of the "at-home" study are understandable. Some are not. But, I guess we'll seen June 16th.

Haven
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Re: CPAP

Postby Haven » Wed Nov 18, 2015 4:57 pm

I was also "pushed" into taking a sleep study and getting a CPAP. Fortunately, because I do not open my mouth when asleep, I can use the nasal cushions and a mask that allows me to sleep on my side. (I cannot sleep well on my back and often wake with back pain when I do). I used the CPAP religiously for a year and saw no difference in my quality of sleep or alertness in the daytime. I never had symptoms of sleepiness in the day time and my only complaint at night was WED. I suspect the MD fudged my test results to get me the CPAP because he thought it would help. It hasn't. I've been using it off and on (for several months at a time) for some four years now. I have had some of my worst RLS attacks while using it and some of my best sleep when I don't use it. I'm interested in what Rustsmith says about RLS/PLMS because that sounds a lot more like what I experience. How do I find a true "sleep doctor" and not just a neurologist who too quickly assumes apnea and prescribes a CPAP?

Rustsmith
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Re: CPAP

Postby Rustsmith » Thu Nov 19, 2015 11:45 am

Sleep doctors are usually either pulmonogists or neurologists who add the sideline of sleep medicine to their practice. Running sleep clinics can be a lucrative business for these doctors, especially if they own the side company within the clinic that sells the machines. That certainly turned out to be true of the doctor that I visited.

So, how do yo find a "true sleep doctor"? You need to ask around because you are not going to be able to tell the "doctors" from the business men with an MD just by looking at credentials. You can ask your friends who they do and don't recommend. You will be amazed at how many people you find using CPAP machines. Also ask your GP for a referral, but be aware that he may also have a stake in whatever he tells you.

Even if you do end up in an assembly line operation like I did, all is not lost. You are NOT required to buy your machine from the supplier associated with the sleep testing center. The doctor is required to write you a prescription, one way or another. You can get the machines online for much less than the local supplier will probably charge. Also, demand a copy of your sleep study report. Do not settle for a simple one or two page summary. Ask for the detailed report that should have lots of numbers and graphs. I was told I had an AHI of 10 (the minimum for insurance coverage), but when I got the detailed report I found that I had 1 apnea event and 7 hypopnea events for a total AHI of 8.

So, I continue to use the CPAP machine primarily because my wife says that it stops me from snoring. I do not feel that it improves my sleep, as is evidenced by my nightly AHI score that ranges from 2 to 5.

And finally for those who have not read this entire thread, I am not overweight so my problem is not classic sleep apnea but a related condition that occurs is thin people called UARS. UARS does not have the associated loss of oxygen saturation and therefore is not associated with cardiac problems. But UARS can destroy sleep by causing micro-wakening events, in my case 28/hr.
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.

sleepdancer2
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Re: CPAP

Postby sleepdancer2 » Sat Nov 21, 2015 9:36 am

Haven wrote:I was also "pushed" into taking a sleep study and getting a CPAP. Fortunately, because I do not open my mouth when asleep, I can use the nasal cushions and a mask that allows me to sleep on my side. (I cannot sleep well on my back and often wake with back pain when I do). I used the CPAP religiously for a year and saw no difference in my quality of sleep or alertness in the daytime. I never had symptoms of sleepiness in the day time and my only complaint at night was WED. I suspect the MD fudged my test results to get me the CPAP because he thought it would help. It hasn't. I've been using it off and on (for several months at a time) for some four years now. I have had some of my worst RLS attacks while using it and some of my best sleep when I don't use it. I'm interested in what Rustsmith says about RLS/PLMS because that sounds a lot more like what I experience. How do I find a true "sleep doctor" and not just a neurologist who too quickly assumes apnea and prescribes a CPAP?

Haven, your experience of worse symptoms when on CPAP is classic. I'm guessing you have limb movements that disturb your sleep. Were you diagnosed with PLMD? Sleep apnea and PLMD are both sleep disorders that can vie for prominence, with the winner masking the other disorder. When your sleep apnea is resolved by CPAP, the resultant better sleep gives the PLMD more opportunity to fully express itself. I have both disorders. I've seen this evidenced. These dual diagnoses can be stubborn to accurately assess and treat as the nights are so variable, and one can't live in a sleep lab. My perspective on this is that sleep apnea is diagnosed by specific criteria. The margin of error for a false positive is minimal, and a copy of the test result details would likely indicate any missteps. The chances of a doctor fudging a result is surely few and far between, as a copy of the report goes to a referring physician. That's really risky behavior. If I were you, I'd get a copy of your sleep report and go over it with someone knowledgeable. If your decision on quitting CPAP was based on how you felt, the decision may not have been in your best interest. Get all the facts then see what you think. Let me know if I can be of any help.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

sleepdancer2
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Re: CPAP

Postby sleepdancer2 » Sat Nov 21, 2015 9:54 am

My worst sleep doctor even for just the sleep apnea part was a pulmonologist. My best sleep doctor was a pulmonologist who not only handled my sleep apnea well but also was well versed and eager to learn even more about the neuro side of my sleep issues. In theory, a sleep doctor should be trained in all aspects of sleep disorders, but the ones with a "factory" mentality will focus on a narrow range of customers they can crank out on the assembly line. Can be hard to determine ahead of time who is best for you unless you found them by personal reference. I got lucky on my 3rd one. As was already suggested, knowledge is power. Get your own reports and seek to understand them. Twice I've had doctors review my data and it resulted in addendums to my sleep reports.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

crazy joe
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Re: CPAP

Postby crazy joe » Sat Nov 28, 2015 12:26 am

Hey Guys... Is there a possiblity if the apnea is diminshed to a great degree that the rls will abate too over a period of time? PS---- try the apap machine. Way better than the ccrap machine imo

Rustsmith
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Re: CPAP

Postby Rustsmith » Sat Nov 28, 2015 12:45 am

When my RLS was first diagnosed by a sleep neurologist, they told me that I had both sleep apnea and RLS. I specifically asked, are these two separate and unrelated disorders? The answer was yes, they are separate and unrelated. The different forms of apnea tend to be related to the structure of the throat where RLS is neurochemical. The oxygen deprivation from apnea does cause chemical changes, but I suspect that these would only be further complications to the RLS.
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.

badnights
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Re: CPAP

Postby badnights » Sun Nov 29, 2015 2:54 pm

Hey Guys... Is there a possiblity if the apnea is diminshed to a great degree that the rls will abate too over a period of time?
It could be affected - any reduction of stress will tend to improve WED/RLS symptoms, any increase in stress will tend to worsen symptoms. But the two disorders are not linked in any other way that I know of, and reducing stress won't get rid of the WED/RLS, since it's not caused by stress.
Beth - Wishing you all restful sleep tonight
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