advice for diagnosis steps to take

[odoyle]

Hi All,
I'm new here and trying to explore what this stuff is all about. I'm hoping you all can offer some advice on next steps for me, since I'm a little stuck! I'll try to be brief:
- starting last month, randomly been waking up when almost falling sleep with a quick breath. Seems to happen every ~ 10mins, sometimes for hours I usually eventually sleep for a couple hours.. sleeping on back, sides, or even stomach doesn't seem to matter. No other symptoms..
- I recorded myself sleeping and comparing to typical apnea sounds online, I don't think what is happening to me is as severe or pronounced. mild snoring, breathing is mostly consistent but can hear the deeper breaths and awakens every now and then.
- went to a sleep specialist, insurance denied supervised polysomnography as not medically necessary. Did a home sleep test with a watermark ARES (in case anyone knows what that is). btw, I would not be typical for apnea - 35yo, male, slightly overweight (BMI 26), I'm not super sleepy during the day (epworth = 6)
- results: 0 AHI, 9 RDI, % time < 90% SpO2, mean SpO2 96.7% (min 93.3%), 14.1% snoring > 30dB. pulse rate variability 57 events > 6 BPM per hr.
- So they said I don't have apnea, and think it is GERD (though I have no symptoms of that) and gave me nexium 40mg for 30 days.
- In the meantime, I was trying several other things none of which helped: 6 days of prilosec 20mg, zyrtec and allegra in case it was allergies (mild symptoms of allergies), sleeping upright (this seemed to help a little, but hard to actually sleep sitting!), sleeping at an angle..

At this point, since I already tried prilosec and it didn't help and I don't have symptoms of GERD, I'm hesitant to start on this course of nexium since I have read bad things about these PPI medications..

Is there a way for me to try to get a lab sleep study? Would it matter, or is RDI = 9 already telling me there is something going on? Wonder if I have CSA not OSA?
Is there a way for me to try a CPAP or something (these sound complicated and expensive though)?
I'm going to try to get a second opinion from another sleep specialist, but not sure if insurance will cover this?
Any other ideas what I should do next? I'm really scared of these PPIs! Anyone on this forum have similar experiences?

Thanks in advance!

[AlanE]

Without a proper polysomnogram no one here can say for sure what is wrong. We would just be guessing. There are home studies that are cheaper than a lab study. I would say you need to seek out another sleep doctor. For GERD, I use Rinitadine (generic zantac) which doesn't have quite as many side effects. But I can't recommend you take that either. Have you consulted with your GP about GERD?

[trish6hundred]

Hi odoyle,
WELCOME! to the forum.!
Hang in there for more answers to your question and good luck to you.

[odoyle]

Thanks! My GP was the one that recommended I try prilosec for a week.. which I did with no noticeable difference in sleep issues. I did some type of a home study - whatever this thing does: (I can't post links, but maybe this works: join.sleepgroupsolutions.com/products/watermark-ares)
Anyways, if the consensus is that I should do a polysomnogram, any advice on what if any I can say or do to change the insurance opinion / (and if I get a new specialist) since they don't think this needs to be done.

Thanks

[Mosquitobait]

You can have silent GERD and it will interfere with your breathing as well as your blood pressure. I'd give it a shot with the med first. I had no change at 20 mg, but a lot at 40.

[Sleeprider]

According to reviews of the home sleep study alternatives, the ARES has only recently been granted approval from FDA for apnea testing, and has only a 2% failure rate compared to PSG. http://www.sleep-apnea-guide.com/home-sleep-study.html That said, home sleep tests tend to produce more false negatives as compared to PSG, so it is possible your RDI could be refined into some apnea. It is unlikely it would produce the moderate apnea levels most insurance insist on for coverage.

The symptoms you describe " waking up when almost falling sleep with a quick breath. Seems to happen every ~ 10mins, sometimes for hours" is common with many people, and is a form of sleep onset apnea. This may still be disregarded in PSG, since events are only counted when the EEG shows sleep onset. I have severe OSA and experience similar feelings, and had a lot of trouble falling asleep at my PSG test in 2008. So I understand how disruptive that might be to sleep, whether it is OSA or not.

You have some options. If you think CPAP might help, discuss it with your doctor, outlining why you think CPAP might help you to have better sleep without drugs, or to overcome upper airway resistance or whatever seems to be the issue, and ask for a prescription. It's just mildly pressurized air. Assuming insurance would not reimburse you for something not determined as medically necessary by PSG, you could look at some alternative purchasing options like Amazon where you can buy a new Philips Dreamstation Auto CPAP with humidifier and heated hose for just over $400; or look into used machines in Craigslist. In other words, the cost of entry is not too great, and if you find it beneficial, just work with your doctor to have your medical records reflect that. I think this is much lower risk financially than paying several thousand $$ for a sleep study, medical review and a lot of stuff that may still result in negative findings for "medical necessity".

[odoyle]

Hi all,
Thanks for the help and advice. I'm back to provide an update and ask a couple more questions about whether my results would indicate a machine might help.
I tried the 40mg nexium, and that didn't help, and I found a better doctor. He was able to submit for a sleep study based on the home sleep study results (RDI = 9). I'm including the results here (as a photo below). Basically the doc said that I have some mild apneas (AHI= 3.1), but SpO2 never goes below 90%. He said AHI < 5 doesn't need to be treated because there aren't long term effects or damage, and he doesn't think that is why I'm having sleep issues. He gave me a prescription for ambien 5mg and also flonase. I don't really feel like I've made any progress and don't want to have to take sleep meds that don't really address the underlying issue.

So two questions:
1. Is that really true that AHI < 5 isn't going to be bad long term to just live with?! My heart rate changes alot..
2. Should I try to get one of these CPAPs and see if it helps? Is it really complicated to set up and optimize on my own? If so, is this the one people would recommend? DreamStation Auto CPAP DSX500T11 w/HT humidifier and heated tube? Also, I need to buy a tube & mask?

Thanks!

[Sleeprider]

Based on these test results, you have a somewhat disrupted sleep pattern but manage to visit all stages of sleep. Sleep onset was very delayed, but the clinic environment can account for that. With regard to health, you don't have any oxygen desaturation that would cause the response seen in people with moderate or severe apnea where low oxygen levels cause a shot of adrenaline, rapid heart rate and respiration to recover from elevated CO2 or low O2. In addition, without obstructive apnea, there are no high thoracic pressures from respiratory effort and closed airway. These are generally thought to be the mechanisms of heart damage https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3763071/ .

The AHI is not high enough to meet the current insurance and medicare definitions of "medical necessity". So coverage is very doubtful. CPAP can be very comfortable to some of us, especially when we need it. Without a doubt it reduces respiratory effort. If you can persuade your doctor to write a script to try CPAP, I'd say give it a shot and see if it helps. I replied before, the cost of a high quality auto CPAP is not prohibitive, and you can get one with or without a prescription. You could even find something inexpensive on Craigslist to try. If you want to pursue that, ask for some buying pointers. I think this test pretty much dismisses insurance from the equation.

[Sleeprider]

I didn't fully answer your second question. CPAPs and auto CPAP is easy to setup. We can give you the information you need to get started very quickly, and by reading the available provider manuals that describe the how and why of settings. The Dreamstation Auto with humidifier and heated tube is on amazon for $440 last I looked, and an Airfit P10 pillows mask with 3-sizes is about $68. Prices vary daily, so that is approximate. So you could fully equip for about $500 new, or find a used set locally. Tell me your zip code and I can quickly tell you what's available used and how to ensure it is clean and a good buy.

[odoyle]

Thanks for the detailed helpful replies! I'm in the DC area (20003). I agree, not worth pursuing further with insurance etc. Trying to decide what/how to research if I want to try something on my own. Why do people sell used ones? Does apnea ever go away?