Should I be on CPAP?

[jayme]

I'm looking for opinions...I have a fairly non-responsive doctor and want to see if I can get any feedback from people with similar sleep study results to mine to decide on what to do next...

I have had trouble with sleeping for any extended period of time for about 4 or 5 years now. I have never been told I snore, I'm a habitual side sleeper, and just started having the sleep issues around age 25/26--there were no other environmental or physical changes at that point.

I had been living outside of the country and had limited access to medical care but now upon moving back to the US I went to see a doctor and as soon as I mentioned any issue she said a variation of "yes, you're obese, you need a CPAP" and sent me off to get a sleep study, without asking anything about the context of my sleep issues. I have had family members with sleep apnea and others with narcolepsy, so I have seen some of the signs and symptoms in person and wasn't completely convinced this was my issue. But I had the test and had the following results:

AHI: 3.2
RDI: 15.3
Nadir: 92%

The person (they never introduced themselves so I have no idea what their actual role was) at the sleep center spoke to me for less than 3 minutes, said my results were fairly normal but that because of the RDI I needed a CPAP and sent me on my way. A few weeks later I received the CPAP machine (ResMed AirSense 10) and I've been using it for a little over 3 weeks now but have yet to be able to sleep for more than 3 hours a night (I have had several nights where I kept the CPAP on for 7-8 hours, however I was awake for most of that...most nights have averaged around 4 hours with the machine before I give up and turn it off). I don't think I have issues with mask fit--I have pillows and, other than pulling up on my nose, they're comfortable enough and I can keep them on for the night. I've never been a mouth breather but I have also tried sleeping with and without the chin strap with no discernible difference.

My original doctor who referred me for the sleep study prefers to communicate via email...so I emailed her today explaining how I don't think the CPAP is going to be able to help my insomnia and that I'm concerned with how much worse it is making it, to ask if we could see what other causes there might be for the insomnia. Her response was "you can return the CPAP machine." The company that physically gave me the machine said they defer to my doctor and will only contact me to pick up the machine, if that is what I decide.

So, basically, I'm looking for opinions. My trial month is running out and it doesn't look like I have a medical professional who will given me any worthwhile advice. Do people with more experience think those scores warrant the use of a CPAP machine? And should stick it out and one day it will magically help? From what I have found (again, mostly through talking to family members with sleep disorders and google...so who knows how accurate any of it is...) my results were fairly low and often aren't treated.

Or do I look for a new doctor? Or do I just give up and accept I'll be tired forever?

Any response is appreciated!

[TASmart]

I think the RDI is a tricky one. There is some amount of disagreement id RDI should be treated/insured as Apnea or not. My belief is that if the RERAs are disrupting your sleep, causing your sleep architecture to be poor, then treating is a good idea. IMO, there are two big issues with SDB, one is if your O2 levels fall below low, and the other is that if your sleep architecture is not normal. Your O2 looks OK, but without seeing more of the sleep study I sure cannot tell if you are not getting enough phase 3/4 and REM sleep. In my case, I had moderate SA, but a high RDI. I also had deficient deep sleep and rem sleep. Using a CPAP is normalizing my sleep architecture and I feel so much fresher and so much more alert and so awake.

I think most of us had some degree od insomnia after starting PAP therapy, after all, it is odd to try to sleep with a pressurized mask on your face. After a few days, I was able to not only sleep all night with normal momentary wakes, but I fall asleep faster, and almost never have to get out of bed and pee.

If I were you I would try like heck to get used to the mask/machine combo and get used to sleeping with it. Especially if you are suffering from daytime sleepiness, that is no way to live and it can be helped in most cases by PAP therapy.

Good Luck in your quest!

[Pesser]

I never had a study. I knew I had to try something because my wife told me I had it. She was not sure how bad. You see, we have an autistic daughter who was a flight risk. So, I stayed awake till 3AM. My wife would wake at 5AM. We never woke up together. When we placed my daughter in a group home the truth came out. For the first time in 26 years we went to bed together and woke up together. My snoring was real bad and I stopped breathing. I got a rental; put the pressure at 4H20. My AHI was 3.8 and the pressure had increased to 8h20. I never slept more than 5 hours. After three years I now sleep 7 hours and I finally feel OK. Still an insomniac!

[Mogy]

Are you feeling better or worse on CPAP?
If you can't sleep more than 4 hours with CPAP, do you then sleep the rest of the night without?
I started about 3 months ago but still don't sleep many nights more then 4 hours. I just take it off and sleep the rest of the night without.
Still, it has made a big improvement for me.
I have lost a bunch of weight though. I think the CPAP has helped keep me motivated.

[Hopeful50]

I would definitely see another doctor. If you don't have a complete copy of your sleep study results, get one - it's your legal right. I would take that with me to a sleep specialist. Good luck!

[kteague]

Can you post the rest of the sleep study report? Sometimes clues lurk in the details. My first curiosity would be if your insomnia was present during the study and if you had enough deep and REM sleep (especially while supine) to be reasonably sure it captured your worst case scenario. Unless you study was optimal in capturing data, you can't be sure you apnea isn't worse than reported. As to the significance of your RDI, I defer to those more knowledgeable.

[Jussumguy]

Can you keep the machine? Even if you decide to not use it right now you might try again later. Once you return it your insurance may refuse to go through the process again.

[Guest]

Hi all! Thanks so much for the responses.

I'd love to be able to share more data from the sleep study, but I had to file an information request to even get the three numbers I have here--they wouldn't even let me take a photo of the results in the sleep lab!

I have been working on losing weight as well and have lost about 10 pounds since March...but there is only so much weight that can be lost when I can't get any sleep. I teach at a university and I've had several instances over the past two years where words just literally fall out of my mind when I'm teaching and I have to pause to figure out how to string a sentence together. Figuring out a way to get at least a few hours of decent sleep is my priority over everything at this point.

The difference between the sleep I get with or without the machine probably isn't very significant. When I take the mask off it has always been a conscious decision from me just being sick of being awake with it on versus awake without it on--sleeping isn't any easier with or without. I've used the ResMed app and my AHI reported through that has an average of .4 with use of the CPAP. I'm basically just as tired, or sometimes more tired, when I wake up every morning (with CPAP or without) as when I go to sleep. I pretty much never have trouble falling asleep in less than a half hour, but always wake up for the first time within 2 hours, and then repeatedly throughout the night (with and without CPAP so far) so I don't think I've seen regular REM sleep for a few years now.

I could theoretically keep the machine but it'd be $100 out of pocket and with how unresponsive the medical professionals I've dealt with so far have been I have a feeling me keeping it would signify to them that it was me accepting my problem is solved and I'm not ready to give up yet. I have a little bit longer I can keep trying it to see if it suddenly picks up I guess.

My mom had similar symptoms to me, with more muscle complaints, and was eventually diagnosed with narcolepsy with cataplexy--I definitely don't think that this is what I have--but she had similar sleep test results (from what we can see with the numbers I have...) where her doctor told her it wasn't worth using a CPAP. Seeing the change in her quality of life once she finally got her diagnosis and appropriate treatment makes me desperate to get my own!

[jayme]

Hi all! Thanks so much for the responses.

I'd love to be able to share more data from the sleep study, but I had to file an information request to even get the three numbers I have here--they wouldn't even let me take a photo of the results in the sleep lab!

I have been working on losing weight as well and have lost about 10 pounds since March...but there is only so much weight that can be lost when I can't get any sleep. I teach at a university and I've had several instances over the past two years where words just literally fall out of my mind when I'm teaching and I have to pause to figure out how to string a sentence together. Figuring out a way to get at least a few hours of decent sleep is my priority over everything at this point.

The difference between the sleep I get with or without the machine probably isn't very significant. When I take the mask off it has always been a conscious decision from me just being sick of being awake with it on versus awake without it on--sleeping isn't any easier with or without. I've used the ResMed app and my AHI reported through that has an average of .4 with use of the CPAP. I'm basically just as tired, or sometimes more tired, when I wake up every morning (with CPAP or without) as when I go to sleep. I pretty much never have trouble falling asleep in less than a half hour, but always wake up for the first time within 2 hours, and then repeatedly throughout the night (with and without CPAP so far) so I don't think I've seen regular REM sleep for a few years now.

I could theoretically keep the machine but it'd be $100 out of pocket and with how unresponsive the medical professionals I've dealt with so far have been I have a feeling me keeping it would signify to them that it was me accepting my problem is solved and I'm not ready to give up yet. I have a little bit longer I can keep trying it to see if it suddenly picks up I guess.

My mom had similar symptoms to me, with more muscle complaints, and was eventually diagnosed with narcolepsy with cataplexy--I definitely don't think that this is what I have--but she had similar sleep test results (from what we can see with the numbers I have...) where her doctor told her it wasn't worth using a CPAP. Seeing the change in her quality of life once she finally got her diagnosis and appropriate treatment makes me desperate to get my own!

[LSAT]

Hi all! Thanks so much for the responses.

I'd love to be able to share more data from the sleep study, but I had to file an information request to even get the three numbers I have here--they wouldn't even let me take a photo of the results in the sleep lab!

Remind your doctor/lab of the HIPAA Rules. You are entitled to any and all of your medical records.
http://whatishipaa.org/

[reolhlains]

What lousy help the dr/sleep tech has given you - jeeeees, no wonder people end up with no idea what's going on to them!!
I think you've came to the right place however!
You're results are very similar to my sleep study results (my RDI and AHI were a bit higher, but my AHI was still under 5). I struggled on for 2 years before trying CPAP, which has been one of the single best things I've ever done in my life - I can't imagine being without it now.
If I were you, I'd try and work with the forum to get the best out of CPAP - there is soooo much help available, I couldn't have done without it to be honest. Then see how you feel after a month or so. With me, they explained that, as my AHI wasn't too high, it may take a while before I notice a difference - it actually didn't take long at all!

[Pesser]

I had difficulty getting used to the unit and attachments. So I started reading in bed with the CPAP on. Made a big difference in my anxiety levels; and soon I had no problems. Today I have a fear of sleeping without my machine!

[Jussumguy]

Heck if you can walk away with a usable machine for $100 do so. It seems like some of these sleep clinics arnt too concerned about frustrating their patients. There's more help on this forum from people using their own machines not some uninterested counselor. I had $450.00 into my machine and got no encouragement from my group. In a fit of frustration I offered to give up and return it hoping they would put out some effort. Didn't happen but they were happy to take the unit back. Oh well hang in there