Got restless legs now and can still feel my throat closing.

Well been 2 years on CPAP, thought I somewhat restored my functioning in my life. It certainly improved more than without the mask, but still wasn't great. I just dealt.

Now I feel like I've lost all progress. I've developed restless legs now which makes me sleep even worse and on top of that I can still feel/hear my throat closing with my mask on, even at the max pressure of my machine (20). It makes like a low pitch semi suction noise and rouses me from my sleep. It occurs in the very back of my throat, you could reproduce it by trying to push your tongue into your uvula, that's the sound it makes. I feel this happen multiple times a night, why isn't it working? How much freaking pressure do I need? It's a full face mask.

10 years of horrible sleep, 2 years of semi improvement, and now I'm at my worst again, I get maybe 3 hours a night broken up sleep. Gee, and they said you know what helps reduce severity of RLS? SLEEP. Amazing. that sensation in my legs is so damn distrubing.

I'm at my wits end and my doctor is useless, once I got the APAP he said "there's nothing more I can do for you". Then when I finally fall asleep, I'll be roused within an hour with my heart beating fast as hell, obviously having an event. What more can I do to figure this out? I have no leaks, I've tried pressures from 12 to 20(max).

Don't remember your history, so don't know if you a) sleep on your back (which I think would worsen your problems), or b) ever used a soft cervical collar which would keep your head up and airway more open...

There's a long time member who's the 'expert' here on RLS and knows also about PLMD, so she should be by soon to comment more about those.

You need a new dr that specializes in sleep disorders, so you know the current base line for API as well as getting started the right way.

What?

sventory wrote:Well been 2 years on CPAP, thought I somewhat restored my functioning in my life. It certainly improved more than without the mask, but still wasn't great. I just dealt.

Now I feel like I've lost all progress. I've developed restless legs now which makes me sleep even worse and on top of that I can still feel/hear my throat closing with my mask on, even at the max pressure of my machine (20). It makes like a low pitch semi suction noise and rouses me from my sleep. It occurs in the very back of my throat, you could reproduce it by trying to push your tongue into your uvula, that's the sound it makes. I feel this happen multiple times a night, why isn't it working? How much freaking pressure do I need? It's a full face mask.

10 years of horrible sleep, 2 years of semi improvement, and now I'm at my worst again, I get maybe 3 hours a night broken up sleep. Gee, and they said you know what helps reduce severity of RLS? SLEEP. Amazing. that sensation in my legs is so damn distrubing.

I'm at my wits end and my doctor is useless, once I got the APAP he said "there's nothing more I can do for you". Then when I finally fall asleep, I'll be roused within an hour with my heart beating fast as hell, obviously having an event. What more can I do to figure this out? I have no leaks, I've tried pressures from 12 to 20(max).

Could this be an issue?

http://sleep-doctor.com/blog/the-epiglo ... eep-apnea/

""Because drug-induced sleep endoscopy has some risks and costs, many of us who have tried to determine other ways to obtain the information we get from sleep endoscopy without the risks and costs. I have noticed two things in patients where the epiglottis plays an important role. One is that these patients may get a sensation of choking with their continuous positive airway pressure (CPAP) therapy, which is not only dramatic and disturbing but which is very different from other reasons for being unable to tolerate CPAP. This may occur because CPAP could, at least theoretically, be pushing the epiglottis backwards to create a complete seal in the throat that cannot be relieved by higher CPAP pressures.""

49er

Julie wrote:What?

Association Psychanalytique Internationale

sventory wrote:I've developed restless legs now which makes me sleep even worse

Get treated. Drugs. There are good ones. No use suffering! You need a doctor who know the protocol and will work with you.

sventory wrote: It occurs in the very back of my throat, you could reproduce it by trying to push your tongue into your uvula, that's the sound it makes.

That is a very typical apnea - the tongue collapses into the soft palate (uvula is part of the soft palate) and blocks the airway. It's the problem most of us have.

Julie wrote:Don't remember your history, so don't know if you a) sleep on your back (which I think would worsen your problems), or b) ever used a soft cervical collar which would keep your head up and airway more open...

+1

That post was very helpful thank you. I sometimes sleep on my back and do notice it more then. I didn't consider the epiglottis, I considered that but for the adenoids. It really feels like even if I keep increasing my pressure, it can't prevent it, so hopefully it's something like that and is fixable. So tired of nothing in my ever being able to be fixed. Yeah I guess I should go and get one of those endoscopy. They seem pretty common so why my Doctor say nothing about it? In terms of drugs, yes they help...but they also cause augmentation and tolerance...pretty much every drug I ever try for sleep slowly stops working from resistance, and the rebound is even worse then when I have to stop them. Seems that's also true with the dopamine drugs used to treat RLS...god why does it have to be me, I used to sleep so freaking well, and nothing ever works. I read about yall who found relief on CPAP, nope not me. I read about oh this person fixed their RLS they just had iron deficiency, nope not me. Nothing ever works for me.

Please check your Vitamin D level. When it is between 60-80, you can start to sleep well.

AHI addresses both apnea and hypopnea. It is a perfectly fine measurement of the frequency of occurrence of those events. It does not tell the story on RERA.

sventory wrote:They seem pretty common so why my Doctor say nothing about it?

Endoscopies are not common for sleep apnea.

sventory wrote:pretty much every drug I ever try for sleep slowly stops working from resistance, and the rebound is even worse then when I have to stop them

I wasn't referring to drugs for sleeping, but to drugs for treating RLS. There is a big difference.

sventory wrote:Seems that's also true with the dopamine drugs used to treat RLS

There are drugs besides dopamine agonists that are used to treat RLS. One of them is very safe, has few side effects, is very effective and is widely used.

sventory wrote:I read about oh this person fixed their RLS they just had iron deficiency, nope not me. Nothing ever works for me.

But, you haven't tried any drugs to treat RLS. You probably also have not looked into what exacerbates RLS.

You should see a sleep doctor who treats RLS using the Mayo Clinic algorithm for the management of restless legs syndrome.