Primary Care asking for Second Opinion

[WearyJen]

Been using CPAP for about two weeks. I went to see my primary care doctor yesterday. I showed him the results of my sleep study and he was shocked that they put me on CPAP. He advised me to go see another sleep doctor for a second opinion.

My sleep study showed that my sleep efficiency was 75%.
Sleep stage distribution was:
Stage N1=11%
Stage N2 = 48.6%
Stage N3 = 25%
REM = 16%
Total arousals yielded a markedly elevated arousal index of 45 per hour.
Apnea/Hypopnea Index = 0 per hour
Supine events = 0 per hour
REM AHI of 0 per hour
Total RERA count of 235
RERA Index of 45 per hour

Anyone on CPAP with similar sleep study results? If so, are you finding that it's helping?

I'm not looking forward to 40 years of CPAP if it's not really necessary. I'm using it now. I hate it. I don't know if it's helping yet. I'll go have the second opinion and see what that doctor says. Just looking for more opinions.

[DreamDiver]

My sleep study showed that my sleep efficiency was 75%.
Sleep stage distribution was:
Stage N1=11%
Stage N2 = 48.6%
Stage N3 = 25%
REM = 16%
Total arousals yielded a markedly elevated arousal index of 45 per hour.
Apnea/Hypopnea Index = 0 per hour
Supine events = 0 per hour
REM AHI of 0 per hour
Total RERA count of 235
RERA Index of 45 per hour

Wow - it looks like RERA's are going to become the new AHI. You're getting various stages of sleep. It would be interesting to see exactly how contrasted the RERA's are. If they're just little waves, you may not need any treatment at all. If they're really deep, you probably need a machine that treats RERA's.

I'll try to get some images of what I mean and put them in this post, or later in the thread if nobody beats me to it.

EDIT: I thought I had a good bead on what a RERA is. I thought RERA's were mostly periodic breathing and similar respiratory related things, but apparently, it's more accurately an eeg measurement. I guess I don't understand how they can call it a RERA if it's actually an eeg thing, nor how Respironics can claim to detect them without eeg. I think I'll wait to see how this thread progresses.

[jules]

what was the diagnosis?

[fiberfan]

I had significantly less RERAs in my sleep study and have noticed improvements on cpap. I wonder if your primary care doc was just looking at the AHI and not understanding the impact of RERAs. My primary care doc is really good at knowing the limits of her knowledge. She didn't question the sleep doc but also didn't know what a RERA was.

[roster]

I'll go have the second opinion and see what that doctor says.

You should understand the first opinion before you seek a second opinion.

Find out from the prescribing sleep doctor what the diagnosis was and what the CPAP is intended to treat before you make a decision about seeing another doctor. After that, getting a second opinion may not be necessary.

[WearyJen]

The diagnosis was Upper Airway Resistance Syndrome.

[jules]

then research that - the AHI is low for that diagnosis -

cpap is used for it (as well as sleep apnea) - there have been others on the forum using CPAP for UARS

it sounds like your PCP isn't up to date - not unusual I expect

[Muse-Inc]

WJen, I hope by now you understand was UARS is...resistance to easy breathing is the highly simplified explanation. It might take you longer than someone with simple apnea to figure out the most effective therapy. Some say all apnea people have UARS, guess that's debatable but, those with apnea are able to use their numbers to optimize their therapy...it might not be so easy for you. One of the newer machines (Respironics or ResMed) measures this...I think, so it might be worth investigating that possibility. Comfort with pressurized air and the mask will likely be critical factors for you so be patient and persistent. Lots of posts on UARS here, I'm thinkng specifically of Gary G. and Doc Falcon.

[roster]

The diagnosis was Upper Airway Resistance Syndrome.

I am guessing that your doctor does not understand what UARS is. UARS can be a devastating condition and in some people is more dangerous that sleep apnea.

Note also that UARS often develops into obstructive sleep apnea during the years immediately after menopause.

Rather that seek a second opinion, I recommend that you do some reading on the internet about UARS and then get back into this forum and see what you can do to make CPAP a comfortable and effective therapy. A second opinion can always be sought later if you feel like you need one. Personally, I trust your current sleep doctor at this point.

Good luck and I hope to see you back here participating.

[Slinky]

Medicare PAP Policy Changes

Clarifications regarding calculation of AHI and RDI are also spelled out in the policy. Among other clarifications, the policy states that the respiratory effort related arousals (RERAs) can’t be used in the calculation of AHI or RDI.

[fiberfan]

When I saw my sleep doc after a diagnostic study in February I mentioned how disappointed I was when a study in 06 didn't show OSA. He responded that knowledge of RERAs and their impact on sleep is pretty new. If he wasn't surprised my 06 sleep study missed the RERAs, I think we shouldn't expect a primary care doc to necessarily understand UARS or RERAs.

[ozij]

Your sleep study shows you get aroused out of sleep 45 times an hour. The study uses the EEG waves to identify the arousal.
As jules says, a low AHI is quite prevalent when the diagnosis is UARS --that is no surprise.

Did you have a titration study too -- where they check how pressure affects you sleep?

O.

[WearyJen]

I've done quite a bit of research on UARS - research is what I do for work, so that's the first thing I did. It makes quite a bit of sense. It explains the chronic headaches and chronic insomnia, and maybe even the chronic cold hands!

I did have a titration study. UARS was resolved with a CPAP at 6 cm H2O. I still can't seem to get a proper night sleep with the CPAP, even with different sleep medications. Ambien doesn't last longer than 4 hours for me. Lunesta doesn't seem to keep me asleep. Picking up Ambien CR today. Restoril used to work, but that's a muscle relaxer. Don't think that's a good idea. I fall asleep just fine most days - probably because I'm exhausted. Not sure why I can't stay asleep. Sometimes the mask leaks a bit. Hard to sleep with a mask on your face. But I've never been able to stay asleep.

My primary care prescribed a low dose of an antidepressant thinking the headaches are chronic daily tension headaches and the insomnia is related to that. He thinks I just run at a "high-voltage" - and that the antidepressant could help break the cycle of headaches. I'll try anything at this point - even the second opinion if he needs convincing. I've met my deductible for my insurance, so I have no reason not to go, I guess.

Just looking for more reassurance to keep putting on that damn machine every night for the next forty years.

[BlackSpinner]

A setting of 6 is very low. Some people feel they have trouble breathing at that level.

It may also take your sleeping brain a month or two to trust the machine.
Your best bet is to find someone to teach you relaxation exercises. The ones I learned a long time ago are called "autogenics". I learned then for pain control and migraines but they are also good for insomnia.
http://www.guidetopsychology.com/autogen.htm

[roster]

The odds are very slim that pharmeceuticals of any type will help you become healthy. They should be a last (likely failing) attempt.

Here are the first things you need to do:

1) Practice immaculate sleep hygiene. Nothing fancy, just the basics followed strictly. Mayo Clinic site is a good resource.

2) Exercise. Again, just the basics, you don't have to be a fanatic (like me ) .

3) Healthy diet. Basics here - portion control, lots of fresh vegetables, some fruits, lean meats and eggs, limited grains, supplements but limited. Make sure bowel is regular.

4) Take a different attitude about CPAP and take control of your therapy - use CPAP, don't let it use you. CPAP is not a damn machine. CPAP is the only process that stands between us and our damned deficient airways and a damned poor life. Let's use CPAP to deal with the bad hand (airway) we were dealt and carve out a good life.