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Introduction & request for help/interpretations

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JMB +0 points · 8 months ago Original Poster

TL;DR version: Please take a look at my sleep test results at link below and give me your thoughts/impressions as to CPAP in my case?

https://drive.google.com/open?id=1fyfWf4OQk3NiQaZjRTosVg3yqsp3T5t7

Long version: Hello, all! I have had restless/fragmented sleep for my entire adult life. Tried pretty much everything natural (if it's a natural supplement, I've tried it; methodically, not haphazardly). My sleep hygiene is about perfect now. I even wear blue light filtering glasses at night before bed, which I do think has had a positive effect on my melatonin, but has not helped with my sleep disturbance issues. Healthy lifestyle and diet, so that's not it. No red flags on bloodwork/thyroid/vitamins, etc. Pretty much ruled out everything except for apnea. Finally went to a sleep doc here, who examined me, listened to my case, said he suspected apnea and wanted to do an in lab sleep study. I have no insurance, am paying out of pocket, and can't afford to gamble $1,700 on an in lab test during which I might not even get enough sleep to get results (from anxiety about that exact thing), and which would only lead me right where I am now: wondering about CPAP in my case.

I did a home sleep test instead. The link is above (it wouldn't let me attach a PDF).The second night is shorter because the machine started acting up. My REM total for that night might be higher if it had kept going. Two sleep docs reviewed it. You can see the opinion of the one contracted by the sleep test company. The doc I saw in person reviewed the results and said that home sleep tests tend to under-report (he said this to me in person, too), but this machine is supposed to be pretty darn accurate compared to PSG, which studies have confirmed), and he's convinced more than ever that I have moderate apnea; and since I don't have insurance he would be willing to just write me a prescription for CPAP (which I think is cool of him, since he's not even requiring that I purchase from him).

So, I'm writing this post to get some other impressions/interpretations about my case/sleep report, from you experienced folks. In many ways, this report doesn't look that bad(?). But I know that I have many arousals during the night. Before doing this sleep test, I videoed myself sleeping for three nights, and saw myself move/adjust position at least 25 times a night (but didn't hear snoring, or any gasping for breath). I do get sleep, but I wake up tired. I need to take a few recharge rests (10 -20 min, like meditation, but lying down) during a day, and also one 35-45 min nap in the afternoon, during which I will sometimes doze off for maybe 10 min. max (most of that time spent in stage 1 theta wave/half-conscious sleep). Sometimes this helps me feel refreshed, sometimes just a bit groggy. But I do not find myself falling asleep during the day, or doing regular activities. I "just" feel tired or exhausted. My sleep is not fully restful, it's restless, constantly being interrupted by...something. My brain is very active during sleep (I have half-woken to find my brain literally writing an article or story, for example), but I do not have insomnia (extended periods of wakefulness, or a problem falling asleep). I have often wondered about psychological causes, but even when I feel good emotionally, I still have restless sleep.

Anyway, the bottom line is that I do not want a dental appliance (after researching them and outcomes/cost), or surgery, so that leaves CPAP (or, for me APAP, since I think that'd be the way to go). I'm game try it, but it's not easy to try, for so many reasons, that you all know quite well. I'd want to try a Resmed auto 10, or Dreamstation (no point in renting a different machine, because it won't tell me if a better machine might actually work for me...), but there's really no way to do that, so I'd have to buy one to try it. Basically I'm trying to decide if I think it's worth it to spend upwards of $800-$1,000 (including all supplies, like a good mask) to TRY it. A refurb model might be bricked. I am not poor, but very frugal, so this is hard to swallow. But I am not cheap. There's a difference. $1,000 would be worth better sleep in the long run, but, again, there's no guarantee, so it's a gamble.

I'm curious what you experienced folks think when you look at my sleep test results. I know that the only way to know if CPAP would work is to "try" it (which, again, is much easier said than done), but do any of you have an opinion/experience (first or second hand) as to whether CPAP might even help someone in my situation? And any ideas as to how I might proceed? Does anyone know how I might try a Resmed machine? I can ask the doc/clinic here, but I highly doubt they will let me borrow/rent a high end machine like that. And I'd have to try different masks, which they wouldn't do for free if I haven't bought their equipment. The point is that it is anything but simple (or even doable at all!) to try the high end machines I'd want in order to see if CPAP will help me. A pickle of a situation, to be sure. But any thoughts/advice would be greatly appreciated!! :)

Oh, in another thread, I found the following interesting...

Pugsy: "We can usually spot arousal breathing but not always able to spot any changes in the flow rate that might be responsible for the arousal in the first place....and then there are spontaneous arousals that are unrelated to any breathing issues that can happen too." http://www.cpaptalk.com/viewtopic/t174530/UARS--my-self-therapy.html?hilit=resmed+vs+dream&start=15#p1288142

...because I do have lots of arousals, but I can't tell if they are directly from my "disordered breathing events." It's hard to tell from the results they gave me. What do you think?....

(Please note that I'm not "asking for medical advice" (wouldn't put anyone in that position), but I would love your thoughts/impressions/ideas, etc....!)

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Ruby +0 points · 8 months ago Sleep Commentator

You have spent a lot of time and energy looking for answers and I truly commend you for that. Often people just want someone to give them an answer without doing any research on their own and that seldom helps. People are too diverse. I understand your hesitation to put out money on CPAP and supplies without knowing if you will see any improvement. What a shame it has to be that way.

I don't have answers for you but maybe some questions. When you find yourself awake with your mind engaged, what do you do? Trying to go back to sleep at that point seems like a lesson in frustration. Other than sleep considerations, have you checked out other health issues that might be causing problems? Thyroid issues come to mind first. When mine are off, I feel groggy and lethargic during the day and don't sleep well at night. Blood sugar levels can affect sleep and daytime fatigue. I wish I had answers for you. Hopefully someone smarter than me will chime in on your sleep information.

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JMB +0 points · 8 months ago Original Poster

I do not really have awakenings, but arousals (which I don't remember). Insomnia is not my problem, thank goodness. And yes, I've checked and tried everything. Which is why I am looking into CPAP, which I really don't want to do....

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bonjour +0 points · 8 months ago Sleep Commentator

Welcome, A couple of quick observations. You had no indicated Central Apnea, good. You had VERY few Obstructive Apneas, good. Most of your AHI then comes from Hypopneas which you can think of mini apneas, that is not as restrictive as a full apnea. This means if you choose to buy a machine you want to buy a ResMed because the ResMed EPR algorithm can be used similarly to Pressure Support in a BiLevel machine up to the limit of 3 cmw of a CPAP machine. Pressure support is what treats Hypopneas and flow limits which are smaller than but similar to hypopneas. In your case the machine I would recommend would specifically be the ResMed AirSense 10 Autoset for Her. The "For Her" algorithm is what I think maybe the best for you to treat the Hypopneas and the Flow Limits that I suspect are there.

Look at the RDI spikes on your study, they do not appear to be associated with your Apnea events.
Snoring can always cause awakenings or arousals and there is some correlation there. Look at the Arousals, the small faint marks in the chart above the snores. They seem to correlate with awake, snores, RDI, and obstructive events.

You counted 25 positional changes. I think that is significant. Makes me think of restless leg symptom or something similar. Possibly some mild sleep medicine may help this. Talk to your doctor about this.

I'm sure that with a ResMed Auto CPAP and free Sleepyhead software ( https://www.apneaboard.com/sleepyhead/ ) your snoring (study said light) would be gone and we could better manage your obstructive events. The ResMed BiLevel Aircurve 10 VAuto would also be a good machine choice. It allows much greater PS/Pressure Support which may or may not be needed to manage your events. I mention this because it is a somewhat higher cost than an APAP but not unreasonably so.

The study recommended a Dental MAS or MAD device, these tend to be somewhat more expensive than CPAP and if you get one you want to do so thru a dental sleep specialist, not your regular dentist. But would you like to try a very cheap alternative that may or may not work for you?

Get either a loose fitting soft cervical collar or an anti-snoring collar (no pad in the back) similar to the Dr. Dakotka. For less than $20. It keeps the chin in place (aka the jaw). I have seen this take an apnea patient from AHI of 30+ to under 2 overnight. I don't know but based on the sleep study recommendation it may work. Video yourself overnight if you do.

There are good units that are very low hours available because people give up on CPAP, or someone passed. To essential things to check for on the aftermarket, did it come from a non-smoking environment and does it have low blower hours (not therapy hours)

Fred

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JMB +0 points · 8 months ago Original Poster

Thanks a lot, Fred. Yeah, at this point, I am basically deciding whether it's worth the cost (not only in money, but even worse sleep while I try to see if I can even tolerate CPAP) to try CPAP. At this point, after a lot of research, I am leaning towards the machine that you recommended. I'm currently researching masks. This is all so frustrating, not having definitive answers. Thanks again for your help so far!

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JMB +0 points · 8 months ago Original Poster

Oh, forgot...thanks for the tip about blower hours vs. therapy hours on a machine. What is considered to be low blower hours? How many blower hours should a ResMed AirSense 10 Autoset for Her last?

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Sierra +0 points · 8 months ago Sleep Innovater

I believe it is true that a home sleep study underestimates the true AHI. However, based on your measured AHI of 3, that might double or even triple, but I would not expect it to increase to the moderate range of 15-30. Even your RDI is not that high. But yes, you may very well have a lower mild apnea severity.

Using a CPAP with such a low AHI has lots of potential for mixed results. No matter how good a fit you get with a mask, it is bound to disturb your sleep a certain amount. So on one hand it may correct some borderline apnea events or RERA events which are disturbing your sleep, but on the other hand it might cause some arousal and wakening events. Hard to predict the net result.

If you do go ahead with a machine make sure it is supported by SleepyHead so you can view your detailed data. For low levels of apnea and RERA I would suggest you consider the ResMed AirSense 10 AutoSet For Her model. It has an extra optional algorithm which may be useful in treating lower degrees of apnea and RERA events. As far as masks go, I don't think there is any relationship between price and suitability. It is an individual thing. If I had to guess at a mask with no testing, I would try the ResMed AirFit P10 Nasal Pillow mask first. It is a reasonable price and statistically has good first user acceptance.

Hope that helps some,

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sleeptech +0 points · 8 months ago Sleep Enthusiast

Actually, it is far more likely for a home study to overestimate AHI, and often by a very large amount. They can also underestimate but this is far less common. As a lab based study usually has a lot more sensors, this allows detection of other causes for an arousal besides respiratory, which will reduce the AHI. Because a home study has fewer sensors, almost every arousal detected will be classed as an apnoea or hypopnoea because it is not looking for the other this which could be responsible for that arousal. Sorry if that doesn't make sense. I've just finished a 13 hour shift.

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Sierra +0 points · 8 months ago Sleep Innovater

The problem with home sleep study tests is that they use Time in Bed as the denominator when calculating AHI. Lab tests use Total Sleep Time which is always less than TIB, and will result in a higher AHI number.

Underestimation of Sleep Apnea

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Biguglygremlin +0 points · 8 months ago Sleep Commentator

It's possible that different methods are used in different countries or perhaps even by different professionals.

Shouldn't there be fixed parameters for results that have such profound legal and financial implications?

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Sierra +0 points · 8 months ago Sleep Innovater

It seems to me that the main value of a home test is acceptance by the patient. I'm sure the in lab test is the gold standard for determining the accurate AHI, but if patients refuse to do it, then it has no value at all.

For sure the use differs by location. In Ontario Canada the public health care system will not accept the home study results to qualify for health care subsidy of a CPAP. In Alberta, you can go straight from a home study to using a CPAP, but the government health does not subsidize it. So, it is not on their dime.

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sleeptech +0 points · 8 months ago Sleep Enthusiast

We certainly only use sleep time on our home studies, not time in bed. I imagine it depends on which sensors are used in recording the data.

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Sierra +0 points · 8 months ago Sleep Innovater

The Phillips Alice Night One system that I used had not way that I know of to tell if I was asleep. It may have known when I was laying down, but I'm sure cannot distinguish between sleeping and not sleeping. They used time in bed for the denominator.

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JMB +0 points · 8 months ago Original Poster

Yes, it does help. Thank you! :)

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jeffez +0 points · 8 months ago

Look into CBD hemp oil to smooth out angst and stress. Research carefully for quality and a proven company. There are many products out there trying to cash in on the craze with questionable products. Doctors won't help you with it. See Hemp CBD oil to treat sleep apnea in this forum. CBD seems to help me take away "edginess" and with a calming effect. I'm 12 days into BIPAP use and finding the right mask, but hopeful. ;-)

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JMB +0 points · 8 months ago Original Poster

I actually tried CBD for a pain issue a while ago (does not affect my sleep). Did lots of research, spent lots of money on expensive/"high quality" CBD oils, and they did absolutely nothing for my pain, nor did I sleep any better. It is also my understanding that the real effective dose of CBD is more in the range of 300mg (this is based on actual studies). The small amounts most people take are likely not doing anything other than providing a placebo effect (which is fine, I guess, as long as it works). At this point, I think that CBD is mostly hype at the amounts people take, and let's be honest, it's WAY too expensive and to try taking several hundred mg a day/night, nor is that even necessarily safe.

Check out this article. It's pretty much totally in line with my own research, experience, and feelings about CBD:

https://www.vox.com/the-goods/2018/11/1/18024806/cbd-oil-vape-hemp

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JMB +0 points · 8 months ago Original Poster

If I were to get a (used, low hour) ResMed AirSense 10 Autoset for Her, what settings would you recommend I start out with?

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Sierra +0 points · 8 months ago Sleep Innovater

My suggestion for pressure would be 6 min to 10 max for the first night. With an AHI as low as yours it is unlikely you will need more than 10 cm of pressure. If it is not enough then just increase it for the second night. Your first night with a CPAP is likely to be the worst night you will have with it, so my thoughts are to go in at the shallow end. For comfort I would also set it up for an AutoRamp with a start pressure of 6 cm, EPR at 3, but for Ramp Only. If it is a used machine, make sure you do a data reset and restore all factory defaults first. Otherwise you could mix your data with that of the previous owner.

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JMB +0 points · 8 months ago Original Poster

Thanks for these suggestions! I think starting in the shallow end makes sense.

The main thing that's holding me back at this point is that, for example, I think I saw you mention on another thread, Sierra, that it took you "months" on CPAP before you could get good sleep using it? Sorry if I misrepresented what you said. But I'm just not so sure that it's a good thing to do to my body to deprive it of sleep/get even worse sleep than I normally do for even weeks, let alone months, for a treatment that might not actually help. A tough call.....

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Sierra +0 points · 8 months ago Sleep Innovater

Acceptance of the CPAP therapy varies with each person. My wife was diagnosed with an AHI of 80+. While in retrospect, she did not get an ideal machine setup and mask she immediately loved the CPAP due to the improvement in the quality of her sleep. She had near zero adaptation time.

On the other hand I was a reluctant adopter of the CPAP and if truth be known mainly did it to keep my record clean so I could get travel insurance. I was diagnosed at 37 AHI but believed I did not have a sleeping problem. I could get lots of sleep, but I did snore. I found the CPAP uncomfortable and it really disturbed my sleep. I recall considering getting up on one of the first few nights and chucking the whole thing out the window. In any case there was no doubt that it reduced the quality of my sleep until I got things sorted out.

So, you may have two extremes in acceptance there. I believe the overall statistics are that from 1/3 to 1/2 of all those prescribed a CPAP end up not using it, or using it so little that it has no benefit. In the end it depends on perseverance and willingness to experiment with things to find out what works. While I did not initially like the thing, I do have 100% compliance with a bit of 8 hours per night on average since day one.

This all said, I think there is no reason why anyone in the low to moderate AHI range cannot get used to using a CPAP. It just may not happen from night one!

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JMB +0 points · 8 months ago Original Poster

Sierra, why do you suggest to use EPR for Ramp Only?

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Sierra +0 points · 8 months ago Sleep Innovater

It depends to some degree on the specific person and their apnea, but I would say in general most people are as likely to suffer from apnea on the inhale half of the breathing cycle as on the exhale half. So when you set an EPR of 3, then it reduces the exhale pressure by 3 cm. And in most it effectively reduces the treatment pressure. Apnea events are likely to then go up, and if there is room under the maximum then inhale pressure goes up. So it is kind of a vicious circle.

As an example say your minimum pressure is 8 cm and maximum is 15, and without EPR, say your normal treatment pressure is about 11 cm (inhale and exhale). Then you set your EPR to 3 cm. Now you are getting 11 cm on inhale and 8 cm on exhale. Sounds good but you probably will start to have apnea events at the 8 cm exhale pressure and the machine will crank up the pressure, probably close to 14 cm on inhale and 11 cm on exhale. Events are likely to be the same as 11 cm on inhale and exhale, but you have to put up with a 14 cm maximum pressure. It can be much harder to make the mask seal well at 14, and can feel uncomfortable.

In the AutoRamp mode you are awake and the pressure is fixed at your selected ramp start pressure of say 7 cm. It will cycle down to 4 cm the machine minimum on exhale. The extra pressure on inhale helps you breathe, and the lower pressure on exhale feels good to. And since you are awake you should not be having any apnea events. So, the pressures as low as 4 cm on exhale do you no harm.

Make sense?

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JMB +0 points · 8 months ago Original Poster

I think so. It sounds like I'll need to do some experimenting. But, yes, I think I understand what you're saying. Thank you!

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bonjour +0 points · 8 months ago Sleep Commentator

I would suggest 6 to 20 with EPR 2 then adjust for night 2. It is unlikely that you will use the full range but this will give us the data to advise on adjustments. Think of your first night as being similar to a titration study but without all the wires. To adjust post your Sleepyhead nightly charts and we will help you.

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JMB +0 points · 8 months ago Original Poster

Thank you! I still have a lot to learn/research (big learning curve with CPAP), but if I move forward with this, I will almost certainly reach out for more help....

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