Should I buy a CPAP machine?
November 10, 2015 6:41 PM   Subscribe

CPAP machine (or rather, an APAP) has been helping me feel better, I think, but I was never actually diagnosed with sleep apnea and the sleep study results didn't show any apneas. The CPAP trial has ended, and I need some help deciding if I should buy the machine. Many details after the jump!

YANAD. YANMD. Just looking for general advice on next steps I can take to feel more in control of my health, and make the decision I'm facing right now of whether to purchase an APAP machine or not, given that I've never actually been told that I have sleep apnea for sure.

I'm in my late 20s. I've been feeling like a zombie for at least 4 years now, though tiredness and fatigue has been an issue for at least 5-6 years.

In 2010 or so, I started snoring. I had gained some weight -- from about 2010 to now, it's been a steady increase, just due to crap eating and not exercising. I'm now about 40 pounds overweight. I've been told I carry the weight well and don't look it, etc, because I'm a Size 10; however I am on the BMI scale leaning more to "obese" than just "overweight" now.

2011, I started law school, gained a bunch of that weight and started feeling physically worse than I had ever felt before. This has stayed with me since. Always tired, always oversleeping, not feeling refreshed no matter how much sleep I was getting. Always pooh-poohed away by doctors, however -- told that I was young and healthy, and I should exercise (this is even as far back as 2009 when I wasn't even overweight).

Admittedly from 2010 onwards, my diet was pretty crappy, and my lifestyle was pretty sedentary. Around this time, I started having low mood as well for the first time in my life, though I did not discuss that with any doctors due to stigma/not wanting to admit even to myself that it could be depression.

In 2012, a doctor palpated my neck and felt something there. In an ultrasound, I was found to have a thyroid nodule. A biopsy found it was benign. Followed up with visits to an endocrinologist and hormonal workup. He said it was benign, didn't mean anything, I'm euthyroid, don't need medication. That same year, I got tested for PCOS (ultrasounds and bloodwork). Found no cystic ovaries, nothing. End result - told I'm young and healthy and should exercise.

Over the years, I've had low iron. Was told this is a common issue in young women, because we menstruate. I was always prescribed some supplements (Euro-fer or something similar), would take them till my iron went up, then would be told to stop. This was repeated 3-4 times over the course of my life starting from when I was a teenager up until my mid 20s (last time was around 2012).

2011, I started taking a birth control pill. For birth control purposes. It works well. Nice side benefit is I don't really get periods anymore and it has cleared up some persistent acne. This is the only medication I have been prescribed ever.

2014, I got a new doctor. I really like her. This same year, I was found to have high blood pressure for the first time in my life. Blood pressure has been found to be "on the high side" at multiple visits to the doctor. Told I should decrease sodium, and exercise. GP says continuing taking the pill is fine because I've been taking it for years and I'm taking it under her supervision.

February of this year, I told my new GP how much I was sleeping and still feeling tired (9:30 PM to 6 AM everyday). She asked if I snore. I do. She recommended a sleep study. This was after she did more bloodwork and found no thyroid issues or anything, not even low iron which is a first in my life (maybe because I don't even really get periods anymore on the pill).

May of this year, I finally got the sleep study. It took a while to get the referral and schedule it. I felt I didn't sleep well in the study due to being hooked up to all sorts of things -- not like my sleep at home at all where I sleep like the dead.

In June, I got the sleep study results. Took them a while to analyze it.
Sleep doctor says yes, I did sleep in the study, just not REM sleep. The sleep study result did not show any apneas or sleep events. He didn't explain why that is, just kept saying that I did sleep in the study but it wasn't REM sleep.

I don't have sleepiness on the Epworth Sleepiness Scale; however, there was another scale for fatigue and my fatigue was off the charts. So based on symptoms --- fatigue being the big one, but also my weight (overweight), neck circumference, my partner attesting to the fact that I snore and sometimes gasp for breath in my sleep -- the sleep doctor said it was "likely" sleep apnea, and I should use a CPAP and see if I feel better.

July - November 2015, I was using an APAP machine as a trial. The CPAP people generously let me keep it for much, much longer than the 6 week trial period because it took me some time to adjust to it. The pressure had been set from 5-12. Highest it went up to based on the data was 11. However, I found that high of a pressure was waking me up. Sleep doctor adjusted it lower. Set it at 5-8. The machine was causing nasal irritation. I started using the humidifier and found that to be much better. All of this took multiple visits to the sleep doctor and the CPAP people, but in the end, I found I was able to use the machine with minimal problems.

It's still not the most fun thing in the world and I always kind of have to psyche myself up to do it (my spouse has to help with this some nights, reminding me that it'll help me feel better the next day). I do not mind the mask, but I find the hose is the most annoying part now. Still, I can use it most nights without much of a problem. I've used it 2/3rds of the time that I've had it.

There has been no night-and-day difference; however, generally, I do feel a bit better, especially when I have used it consecutively on multiple days. When I am using it regularly, I feel less 'brain fog', increased ability to concentrate and generally a bit better of a mood and a bit more energy (still hard to do things, but easier to work up the motivation to do them).

That brings us to now. The end of the APAP machine trial. They generously allowed me to keep it for much, much longer than the 6 weeks. It's time to decide whether I purchase it or not.

The data shows the highest the pressure has gone is 7.8. Sleep doctor recommends buying the APAP machine at current settings of 5-8, or if my insurance won't cover it, a CPAP set at 7.8 permanently (because CPAP is cheaper, I guess). He went ahead and wrote the Rx for the machine.

My insurance will cover it. The APAP costs over $2000, but with my insurance, I would only pay about $300 out of pocket. The issue isn't money. I will gladly pay the $300 for a machine I will use every night (or even some nights).

The issue is that I'm just not sure if I have sleep apnea. Wouldn't it have shown up in the initial sleep study? In fact, my sleep doctor said at the last visit that he hadn't been sure that I had sleep apnea and that if I did, it wasn't "life threatening", but he's glad that I feel better using the APAP, and that's what's confirmed for him that it's the right thing. But for me, that's left me feeling unsure. I was actually ready to buy the machine until he said that. Now I am thinking -- shouldn't he have been sure? If I am having apneas, shouldn't they have shown up in the first sleep study?

He wants me to buy the machine, get another sleep study with the machine on (he said this is to make sure we have the right pressure), but I'm wondering if I should buy the machine when now I'm doubting whether I even have sleep apnea. People talk about how many apneas/events they were having per hour, and how the machine reduced that, but I don't have that kind of data. I just have a subjective feeling of I feel kind of better now but not even way, way better. Will I feel better over time if I keep using it? If I just get the next sleep study with the machine on, will that show apneas and that the machine set at that pressure is controlling the apneas? Or will it just show that I am sleeping well and therefore the machine is working, and I will never know if I'm actually having any apneas or not?

I am just starting to wonder if I will ever get a "yes, you have sleep apnea for sure and that is why you should use the machine" or if "it's likely sleep apnea and the machine is helping you according to what you are telling us, so you should keep using the machine" is as good as it gets. Based on likely sleep apnea, should I buy the machine and use it every night for the rest of my life?

To complicate matters, I have finally discussed my ongoing low mood with my GP and she said that depression is also something that can cause fatigue and low energy/motivation. She referred me to a counsellor. Counsellor said it's mild depression. I am now starting CBT with him. Counsellor also recommended taking mindfulness based stress reduction classes as well.

Another thing is that my last blood test showed high platelets as part of the complete blood count, and I have also been feeling very dizzy. Apparently, high platelets can cause blood clots. Again, GP says this isn't something to worry about, I can continue taking the BCP for now and she will monitor it. Another blood test has been scheduled for a few weeks from now to confirm if the platelets are still elevated.

But really, I am just starting to wonder if maybe there is another issue entirely and sleep apnea is missing the mark, especially given that my sleep study didn't actually show any apnea events. Have had all basic bloodwork done for diabetes, thyroid problems, etc. My only other current problems are: "mild" depression, high blood pressure (not officially diagnosed) , and now "slightly" elevated platelets.

Apologies for how long this ended up being! Thank you if you made it this far and have any advice for me on whether I should buy the machine or not.
posted by spicytunaroll to Health & Fitness (12 answers total) 1 user marked this as a favorite
I've been in a similar position to you, and here's what happened to me.

Do you still have your tonsils? If you do, I recommend you visit an ENT doctor and get checked out. I was a humongous snorer and was diagnosed with sleep apnea, but we didn't get as far as discussing a CPAP.

My doc said I had the largest tonsils she'd ever seen, and my turbinates were also hugely obstructing my breathing.

I had my tonsils out and my turbinates pared down, and it was absolutely magical how much of a difference it made. I am no longer a mouth breather at night, I don't snore, and I get much better sleep than I've ever gotten.
posted by vickyverky at 6:56 PM on November 10, 2015 [1 favorite]

The sleep study result did not show any apneas or sleep events.

If you experienced no apneas during the sleep study then you don't need a CPAP or APAP machine, and any benefits you feel are due to the placebo effect.
posted by sid at 7:01 PM on November 10, 2015 [1 favorite]

Not all sleep-breathing issues are full-blown apneas. You can have restricted breathing, which can affect you in a similar way without having full airway collapse:

In any case, if you're seeing some mild improvement, it's because something was wrong before. It's possible that you have lots of other issues that contribute to your fatigue, and that the CPAP is only fixing 10% of it, but that's almost certainly better than nothing.
posted by Void_Ptr at 7:02 PM on November 10, 2015 [1 favorite]

The sleep study result did not show any apneas or sleep events.

Are you sure you are reading or hearing this correctly? By my understanding, almost everyone has at least a few apnea events each night. The diagnostic threshold for obstructive sleep apnea is 5+ events per hour if you are experiencing daytime symptoms, or 10+ events per hour if you are not.

At any rate, if the machine is helping, your insurance will pay for it, and you can afford the out-of-pocket expense, then I don't see much reason not to buy it.
posted by Juffo-Wup at 7:05 PM on November 10, 2015

I feel like this is something you don't have to make a decision about right this second.

I'd focus on seeing if there are other reasons for your fatigue. (Autoimmune, parathyroid, etc.)

However, on the other hand, if the money is not an issue I don't really see a downside (besides the money ) to buying it and trying it more long-term. Just because you're using it doesn't mean you still can't explore other medical options. It may even help rule out something. So you can say you've been continuing to use it and you're still left with X symptoms.

Like I said, maybe see what the timeline might be for getting some more medical checks done. If it's like 3 months until you see a specialist, then maybe spring for the machine if you feel it helps. If you can get into your GP or other doctors in a few weeks, maybe wait on it until you have more results.
posted by Crystalinne at 7:05 PM on November 10, 2015

Even if this is working by placebo effect, it's still making you feel better. If money's not an issue then I think you should get it.
posted by the agents of KAOS at 7:46 PM on November 10, 2015

I was a very tired guy who snored a lot; I was unable to stay awake through a movie, a play, or a concert. I did a sleep study; I didn't feel I'd slept at all due to the discomfort of the monitoring apparatus and the noisiness of the room, but the results showed that I had in fact slept and did not seem to have sleep apnea.

Years passed; a different doctor sent me for a sleep study at a different location (one that was more like a hotel room and less like a hospital exam room). This time, I was diagnosed as having significant sleep apnea. I got a CPAP machine, and it changed my life tremendously for the better. I've tolerated the machine very easily; many people, I hear, can't.

This is, of course, just my experience; but I think it does show that a single sleep study isn't necessarily enough to decide whether you'd benefit from the machine.
posted by Jasper Fnorde at 8:28 PM on November 10, 2015 [1 favorite]

I agree with Jasper Fnorde. Get another sleep study.

I had 2 sleep studies where I felt I didn't sleep. They said I did sleep, with no apneas.

The third sleep study I did sleep and.... 47 apneas/hour !!!

I think they don't want to admit that you did not sleep, you might not want to pay the bill. (or the science is not as advanced as they think.)

(after all that I got the cpap and, as far as I can tell, I've gotten no relief.)

Hint: in third study I took an over-the-counter sleep aid, which was allowed by sleep clinic (can't remember which one).
posted by H21 at 8:44 PM on November 10, 2015 [2 favorites]

Ok, so I am a sleep medicine PA (but not your PA and this is not medical advice). You may not have apnea by standard definition (apnea-hypopnea index >= 5) but you could have Upper Airway Resistance Syndrome. That is usually measured by something called a Respiratory Disturbance Index. Not all labs score these events (called respiratory effort related arousals) during a study because not all doctors give UARS much credence and insurances generally don't give a crap about UARS.

So. My office scores the RDI. We diagnose people with UARS and let their response to PAP therapy tell us if treatment is clinically beneficial to the patient in improvement of quality of life.
posted by teamnap at 9:19 PM on November 10, 2015 [4 favorites]

Apneic episodes are most prevalent during REM sleep. In some patients, they may occur exclusively during REM sleep.

A lot of things in medicine aren't black and white, so I wouldn't get hung up on the "shouldn't my doctor be sure?" part. Sometimes things are clear cut, and sometimes they aren't. Sounds like they aren't for you. I don't think you need another sleep study because I don't think it would change anything - you've already tried the treatment and have it ready to use if you feel it's working for you. It's a lot of annoyance to go through, and if it shows more obvious sleep apnea, you go "aha, yes, I do have sleep apnea" but if it doesn't, you're still wondering if maybe you have sleep apnea that didn't show up on the study. If I were you I'd do as your doctor recommends and go by how you feel about whether it's helping you. And get treated for your depression. And consider whether a change in birth control methods might help because depression is a fairly common side effect for some people of hormonal birth control. If you're still feeling extremely fatigued after months of using CPAP, then your symptoms may be due to something other than OSA.
posted by treehorn+bunny at 12:21 AM on November 11, 2015 [2 favorites]

if money is limited and you are trying to prioritise then it might be worth also considering some way to get more exercise and lose weight. i know that is had for many (most?) people, so it would take some serious consideration (don't go spend it on a gym membership you will never use!), but perhaps it would be better spent as, say, part of a bike (or a session with a personal trainer, or a dietician, or whatever you think has more chance of working).

more generally, on the same basic issue, i'm seconding what others here are saying about looking at this more holistically. be more concerned about depression (the CBT sounds great), about general health (could some of this be side effects of the pill?), and have less faith in one machine making everything better.
posted by andrewcooke at 3:09 AM on November 11, 2015

Thanks for being so patient, MeFi, and for the great advice! This was a very lengthy one, I realize.

Basically, I decided not to buy it right then. I decided to see how I feel without it, and wait it out till my titration sleep study. Titration study showed no apneas, but I do have UARS. I got the chance to ask my sleep doctor about it in more detail and I felt it was better explained to me this time.

So bottom-line, I have a machine now! It is helping. I don't think it's just placebo, but even if it is, it's worth it to me to even feel 10% better, and to rule out other things. But I really do feel like it's helping, and especially helping me sleep less! Before I could sleep for 12 hours and still feel tired. Now I can get 7-8 hours of shut-eye like normal people, and feel good. This is especially awesome on weekends, because I can still sleep in but wake up at a reasonable 10-11 AM instead of sleeping till 12-2 PM, and then feeling like I've lost my whole day!

Now to keep these benefits in mind, and get used to using it every night...
posted by spicytunaroll at 1:09 PM on January 22, 2016

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