Overcoming SDB / UARS

[musculus]

Hi All,

Log time lurker, first time poster here. I wanted to start out by saying that this forum has been a great resource for suggestions and support! I apologize in advance as this is going to be a long post...

First, a bit about myself and my experience. I'm 5' 11", 190 lbs, BMI of 26.5 and 16" neck. As I've gotten older, I've gained some weight and started snoring quite loudly, but not stopping breathing or anything. I started getting chronic headaches and back/neck pain, fatigue, anxiety, inability to deal with stress, low mood etc, and it took me a few years to get a diagnosis as my previous doctors were simply just not considering sleep as a factor. I saw a few specialists that focused only on individual symptoms and I finally had to refer myself to get a sleep study as my health issues came to a point where I could no longer cope.

My sleep study confirmed a diagnosis of "moderately severe sleep disordered breathing". Interestingly, my study also found that I had an AHI of 0 as I experienced no apneas, but my RERA index/RDI was 28.4/hr. Here is some more info regarding arousals from my study: "Sleep was severely fragmented by respiratory events and spontaneous arousals. The patient experienced 225 arousals in total, for an arousal index of 47.6 arousals/hr. Of these, 134 were identified as respiratory-related arousals (28.4/hr), 16 were PLM-related arousals (3.4/hr), and 75 were spontaneous (15.9/hr) ---the result of no identifying cause." My study was over a total sleep time of only 283.5 minutes which was sub-optimal, yielding a sleep efficiency of only 66.1% O2 Sats, cardiac and limb movements were all within acceptable levels.

Fast forward to today, and I have been on APAP for a little over a year (413 days says Sleepyhead), and the numbers from my machine look really good. Like AHI/RDI under 1/hr most nights. I am 100% compliant unless I have a sinus cold and can't breathe with my nasal pillows. Whether I sleep 6, 8, or 10 hours, my mask and machine are on. I feel as though I have hit a plateau, as I am still totally exhausted all the time. I try to get between 7 and 9 hours a night and no matter how much I try to get quality sleep, I just feel unrefreshed almost every morning. I've spoken to my sleep doc about this, and he's pretty much a numbers guy. Basically he told me that the machine is doing its job and doesn't seem interested in doing anything more than prescribing sedatives as a next step. My new GP is pretty awesome though and is willing to try a few different things, including getting a second opinion from a different sleep doc.

Here's what I have found with medications and sedatives: 3.75 mg of Zopiclone knocks me out, but I don't feel refreshed at all the next day. I just feel out of it and sometimes it makes me really depressed. I choose not to take Zopiclone unless I am desperate. Clonazepam works well, only 0.25 or 0.5 mg at bedtime and I feel pretty good the next day, and it is the closest thing I can describe as getting refreshing sleep. I limit my Clonazepam use to 1 or 2 nights a week. However, my GP is concerned about long term use of benzos of course, even at the low frequency that I take them. So now my GP just prescribed a low dose of 25 mg trazodone nightly and I am only a few days in on it. I'm not sure yet if it is really helping, so I need to give it some more time.

As for lifestyle, I try to get as much walking and elliptical in as I can, and do yoga once a week for back pain. My diet could be better no doubt, but I try to watch what I eat and exercise portion control. I work full-time with a flexible schedule, but we are understaffed and are very busy at work right now, but I suppose that's better than the alternative. My wife and I also have two kids under 3 right now, so everybody knows how that can affect sleep and everything else. I limit alcohol and caffeine intake, and don't drink nearly as much of either anymore. I supplement with vitamin D, b-complex and magnesium, but don't want to overdo any of those. Reducing stress has become a central focus of mine and I am taking steps to see what I can do to address this.

Here are some questions to all of you that suffer from SDB/UARS. I am convinced that I have UARS as my symptoms are all explained by it, and I know that when I do get quality sleep, literally all of my symptoms improve. My APAP machine is definitely working in terms of managing respiratory issues, but I feel like my nervous system has outsmarted the machine and I must still be getting spontaneous arousals or something else throughout the night. Does anyone else out there have a similar experience to this? What did you and your docs do beyond treating with xPAP? Are there any medications or natural supplements that were effective in helping your sleep quality? Are there any other lifestyle changes that helped affect the quality of your sleep? Bonus question for anyone living in Calgary, Alberta: Do you find that the whacky weather we always have here affect your sleep as well? I find that the constant sudden air pressure changes and "Chinooks" affect my headaches and sleep tremendously.

Again, thanks all for listening to my rambling, and any tips or suggestions would be much appreciated!

What is causing the snore? Any ENT opinion yet?

[tan]

From my experience: I have borderline mild OSA (slightly below 5 AHI) and moderate UARS (18 RDI).

Just out of curiosity, reduced my IPAP13 EPAP9 to 11 and 7 respectively for 4 days: got "0.0" or "0.1" in Sleepyhead, but didn't feel/sleep well. Returned back to 13/9 last night - slept well and feel refreshed.

I'll try to repeat the experiment with reduced pressures later for a longer time to rule out other factors and to be able to make more definitive conclusions.

[JohnnyBOY]

Hi:

I've been meaning to post in this forum since I found it. I had to read it all over again. I have UARS too. It's not diagnosed, but I have all the symptoms too. Is there a diagnosis for this?

Hyper sensitive nervous system, light sleep with a lot of arousals, can't tolerate cpap, nor it makes me sleep better, short apneas, lots of hypopneas, and a very narrow airway all the way. Couldn't use nasal masks due to leaks through lips (not open mouth), so I use a full face mask.

I've always failed at using cpap, I'm in South America, and i've had terrible lack with sleep studies/titrations, so it's hard to post here. I don't have the data of my sleep studies at hand. I can post that later.

I'm pretty bad, and have been for years (severe untreated sleep apnea, chronic reflux, insomnia, etc) and I'm disabled now. I,m 40, and I'm not obese. So I'm back to trying CPAP again. But this time I'm using an APAP, pressure range 8-12. I got this ENT to prescribe it without a titration.

I know that's what I should do, but I can't go through that now for I have delayed phase sleep syndrome (sleep aids dependance) and my throat is collapsed even awake from acid reflux.

I used to have a Resmed Servo machine that i hardly used and i think it's broken now. The first sleep study i took in the US (after several here) showed i have complex sleep apnea (obstructive and central). None of the other ones did. Some even showed i have no apneas (UARS?). Lots of awakenings and hypopneas. Last one showed over the 100's AHI (triple severe sleep apnea?).

Now Doctor Steven Park saw my sleep endoscopy (DISE) video on Skype and told me I have expiratory apneas, or expiratory palatal colapse, possibly showing as central apneas in my sleep studies, as well as obstructive sleep apneas. And definitely UARS.

After this long journey i'm kind of starting to find answers and I've been advised nose and MMA surgery by several experts. This last one next year. So, i want to try CPAP again so I can make it till then. And I forgot to say that I do use an oral appliance that pushes my lower jaw forward which helps a little bit.

I hardly feel any air pressure with the APAP, like it happened with my Servo machine. I spend all night in this very lignt sleep with the mask on (Simplus, full face) without any leaks I think. I feel like it's not doing anything, like always. Only one night I was advised to raise the air pressure range to 10-14, I did and i felt a bit better. But then I didn't so I changed the other settings (Cflex, ramp, etc) and now I don't feel any air pressure again and it's not helping.

Does anyone know where I can find a link to the clinical menu of this machine? It's the Devilbiss Intellipap Autoadjust. Or can anyone explain it to me? It's an old one I think, cause it doesn't support any apnea tracking software.

I heard Dr Krakow's talk with Doctor Park again these days and he mentioned Auto bipap and Servo machines for UARS. As well as self titrating with auto adjusting devices. As I'm also planning to buy a new machine, is there any that's special for, or more easy to use for UARS patients?

I'm also thinking about going to see Dr Krakow for a sleep study and titration, since he treats mental patients.

Sorry for this long post and thanks for any help.

John.

[Julie]

My 5 yr old IP machine gives data in two ways, either by using the module and software it comes with (see full description of machine+module on Cpap.com) or by showing code numbers on the screen in the a.m. that I enter in a little box (on DeVilbiss site or - easier way - Cpap.com on product pg) that converts to basic data like AHI, leak rates, 90% pressures, etc. etc. which for me is enough as my #'s don't ever change much - very consistent simple obstructive apnea. Not sure why you think it doesn't give data (or do you have a very old machine?).