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.]
badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: CPAP

Post by badnights »

How do I find a true "sleep doctor" and not just a neurologist who too quickly assumes apnea and prescribes a CPAP?
There are actually three types of sleep doctor; Steve mentioned two, those who enter the field from a neurology specialty and those who enter from pulmonology, but there are also those who enter from psychiatry. Psychiatrists are medical doctors with all the training that entails. Any of the three (or even any other doctor) can learn enough to become a sleep medicine specialist. Unfortunately, as you;ve seen, not all actually learn the way we'd like them to.
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.

ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: CPAP

Post by ViewsAskew »

I remember calling a list of over 30 doctors who supposedly treated RLS. This was after several bad experiences. I asked the nurses questions - they knew quite a bit. Some of the nurses told me to try other doctors, in fact. I narrowed it to three. One was knowledgeable but a true arrogant jerk. The next was very knowledgeable, but she refused to use opioids and at the time, it was the only way we knew of to treat augmentation. At that point, I just worked with my GP, who was much more open to helping me and who would listen to Dr B.

It really is often much harder than it should be.
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.

bobkat49
Posts: 9
Joined: Wed Sep 19, 2012 8:08 am

Re: CPAP

Post by bobkat49 »

I just started with a C Pap machine, after being dianosed with sleep apnea. The doctor assures me that it will (at least partially) relieve my RLS! He says the two are related. (I would have never guessed that I had sleep apnea. Apparently the "profile" of being oveweight and old and having a thick neck is a myth.) My sleep study showed 17 episodes per hour ( of apnea)! So hopefully the C Pap machine will work. :) PS I've had RLS for about 10 years, and am on Mirapex -- but realize that my days of relief from that drug are numbered.

Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: CPAP

Post by Rustsmith »

I just started with a C Pap machine, after being dianosed with sleep apnea. The doctor assures me that it will (at least partially) relieve my RLS! He says the two are related. (I would have never guessed that I had sleep apnea. Apparently the "profile" of being oveweight and old and having a thick neck is a myth.) My sleep study showed 17 episodes per hour ( of apnea)! So hopefully the C Pap machine will work


A number of us use CPAP machines. I don't know that I would say that my machine has helped my RLS, but my wife appreciates the fact that I am no long snoring all night.

Just as we are beginning to think that there may be different varieties of RLS, the sleep doctors are starting to find that there are probably different types of sleep apnea. Obstructive Sleep Apnea (OSA) is currently the most commonly diagnosed and is the one where the "profile" is an overweight male with a thick neck. If you saw the Foundation video "Stephen's Story", you will know that I fit none of that. The type of sleep apnea that I was diagnosed with is called Upper Airway Restriction Syndrome (UARS). The profile for UARS is a slight female with a thin neck and a narrow jaw as well as a few other physical features. I fit all but the female part. CPAP hasn't been found to work as well with UARS as it does with OSA. If you have the results of your study, UARS is characterized by a high number of hypopneas and respiratory restrictions, but few obstructive apneas. The minimum oxygen saturation level with UARS is generally greater than 92% where OSA is usually below 85% and sometimes way below that.

Finally, don't expect immediate results with a CPAP. It can take a few weeks to get used to sleeping with a hose attached to your face but most of us adjust to it eventually. :D
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.

Haven
Posts: 11
Joined: Thu Nov 06, 2014 12:44 am

Re: CPAP

Post by Haven »

I posted this about the CPAP four years ago. Since then I have had another sleep study, one I trust, and now have a new CPAP that I use regularly. I have noticed somewhat better sleep. For one thing, I now am aware of and remember dreaming, so I think I was missing some REM sleep due to apnea. However, I have also developed anemia, and that makes me sleep a lot more both at night and a nap in the day time. I take clonazepam once before going to bed and again sometime in the middle of the night and that seems to be keeping the RLS under control. However, when I take a nap, immediately after actually falling asleep, I wake with the worst "creepy crawlies" and twitches, as well as a weird kind of pain in the back of my thighs.

Haven
Posts: 11
Joined: Thu Nov 06, 2014 12:44 am

Re: CPAP

Post by Haven »

I do need to add that my CPAP has had no effect on my RLS. What has more effect is stretching calves and quads frequently all through the day and especially before bed. My neurologist found the number of myoclonal jerks (is that the right term?) to more important than the number of apnea incidents.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: CPAP

Post by badnights »

However, I have also developed anemia, and that makes me sleep a lot more both at night and a nap in the day time. I take clonazepam once before going to bed and again sometime in the middle of the night and that seems to be keeping the RLS under control. However, when I take a nap, immediately after actually falling asleep, I wake with the worst "creepy crawlies" and twitches, as well as a weird kind of pain in the back of my thighs.
Is it an iron-deficiency anemia? It's important, if so, to correct the iron deficiency, since it might reflect low brain iron as well, and that is a fundamental cause of WED/RLS.

It is depressing to be sleepy-tired and unable to nap. Clearly the clonazepam is affecting only your nighttime symptoms, leaving daytime ones in full force as soon as you relax. How long have you been taking clonazepam? I wonder if maybe, because it has such a long half-life and builds up in your system over time, if maybe you are finally feeling daytime sleepiness because of it. Some people are not affected that way, so if you[ve been taking it for a long time and this daytime sleepiness just started, it's probably not the clonazepam.
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.

Post Reply