Should I opt to buy a CPAP or go for a second sleep study?

[starrynight40]

36 year old male, 5'8 and 160 pounds. Very fit/muscular and active, in spite of being exhausted (I lift weights on days when I can sleep longer and feel more rested). I have been exhausted on a daily basis since either my pre-teen or teenage years - much more exhausted than what felt like normal for at least half of my life. I can sleep for 12 hours and get up feeling like I am at the end of the day and just going to bed. I also feel short of breath and yawn all day long. I can't concentrate to drive. No matter how deeply I breathe, I feel like I didn't breathe enough. I have days when it honestly feels like if I didn't concentrate on breathing, my "normal" breaths would be these little relaxed breaths. It is like my lungs feel lazy sometimes and don't want to take deep breaths while resting or sleeping and that may just be because I'm so tired.

Over the years, I have had a bunch of medical tests, blood work, etc. Nothing wrong was found and I was never sent to a sleep study by any of the doctors. I didn't even know that such things existed because it was all new to me. In the beginning of 2018, I had more tests at the doctor. Also checked thyroid, but it was normal. I have always been very twitchy/jumpy since I was a kid. Basically light to moderate shakes in my hands when holding a piece of paper, for instance. Others noticed it. I still am, for some reason. They said my reflexes were too high at one doctor and they sent me to a neurologist. She said that my reflexes were normal and healthy for someone my age. For the "jumps" that I get sometimes, she said I might want to have an MRI of my back. I get core rapid-fire "jumps" when I lift weights, do situps (only happens directly in the middle when going up or coming back down), etc. Nobody knows why. Anything that touches my hair/head...whether starting into a store entrance and the heat/air above the doorway blows on my head or sitting back in a chair and having my head unexpectedly touch the back of the chair...I "jump" forward as an impulse. Basically as if nearly hitting my head and avoiding it. If I'm carrying something and nearly drop it, a lot more of my body reacts in a jerk fashion than most people's. It doesn't seem as bad when I sleep more. I also feel like my words are slower/slurred a little due to how tired I am. I have tibial torsion in both legs (rotated tibia bones, so basically a form of lightly bowlegged). The left more than the right. I wake up really tired with the main tendon in each foot hurting. It makes me wonder if my sleep issues didn't help cause the issue with my legs. The ortho. surgeon said it wasn't worth attempting surgery because it might cause more harm than good, would keep me out of work for months, etc.

Went to ENT doc earlier this year. Had an MRI of the brain. Nothing wrong. Neurologist saw nothing wrong with the brain. The ENT doc requested a CT scan of the sinuses. Deviated septum, swollen turbinates. In July 2018, I had turbinate reduction surgery for enlarged turbinates and also had the septum corrected. I breathe way easier and my nasal airway is much quieter when I breathe. Before, my breathing was loud and took much longer than normal to let out a full breath. A sleep study referral was given under the recommendation of my now-primary care doctor.

Had a sleep study in March 2018. Their pillows were way too high, their bedding blanket felt like sandpaper and the lady was late putting sensors on me. The whole time, she told me about all of her sleep problems, allergies, etc. Nobody told me that I should probably take a melatonin or two right before the sleep study. I slept 2 hours 45 minutes for the whole study period, even though I was exhausted.

I have so many varying symptoms. Some nights I jerk awake as if it is neurological. Other times I wake up feeling like my airway just closed and that was why I popped awake. Still, other times I just seem to wake up.

My sleep study results (all personal information removed from all documents):












I talked to the sleep doctor. He said that my oxygen levels didn't drop enough to indicate Obstructive Sleep Apnea. 4.7 AHI and he required 5.0 to officially diagnose it. I have a home oximeter and my levels stay regular. My heart rate jumps up and down about 3-5 hours into sleep, however. My deeper sleep seems to be where the problems start. The sleep study shows a ridiculous amount of RERA's for under 3 hours of sleep - 50 "breathing events" where no oxygen levels dropped.




The sleep doctor asked me if I "wanted to try a CPAP"...I declined only because surgery would have been coming up in July and my ENT doctor felt that with my mild AHI the surgery may help stop any issues. The sleep doctor may still write a prescription based on the high RDI of my last study, but I don't have sleep apnea. The RERA's, massive fatigue and no drop in SPO2 seems to mean Upper Airway Resistance Syndrome as a possibility. The sleep doctor said the insurance companies do not accept that as a legit condition and won't pay for a CPAP, so I would have to buy it out of pocket. The sleep center wants $1,600-$1,800 for a ResMed Air Sense 10 (I like that one because of the auto ramp feature and won't need a titration study). The sleep center rep recommended buying it online, so that seems to mean the doctor will write the prescription.

Is it worth it to just try for the CPAP? She said they do a trial for 3 days, but couldn't tell me the cost. Probably hundreds out of pocket. I have read in some cases where people take 2-3 months to get used to CPAP, so paying for a 3-day trial is worthless.

I have pondered getting a second in-lab sleep study to get a better verification of what is going on, but it is expensive out of pocket (like $2,000+ probably). I have a new job and new insurance deductible whereas the insurance from my last job paid for the sleep study and everything.

Think I might have UARS?

[Pugsy]

Welcome to the forum.

With the elevated RDI and RERAs....UARS would be my first suspect. Since you mention it I assume you have read up on it and know that the usual route for treating it is cpap/apap.

Since you will have to foot the bill out of pocket because most insurance won't pay for just UARS without meeting the criteria for OSA diagnosis I think if it were me or my family member in your situation I would opt for buying a gently used full data machine and save some money.

As to what machine....again if you were a family member of mine I would have you try the ResMed AirSense 10 AutoSet for Her machine.
Don't let the "for Her" part freak you out though. It just has 3 modes of operation instead of the usual 2 modes that most apap/auto adjusting machines have and that extra mode might be something that would be of benefit to you.

Your REM latency (how long it took you to get to REM) was extremely prolonged (normal is around 90 minutes) and you didn't get much REM during your short night of the sleep study. Something kept disturbing your sleep so you didn't move through the sleep cycles normally. Was is UARS....don't know but it might have been. It's possible that the respiratory breathing issues you had were enough to disrupt the normal sleep cycles despite not meeting the criteria for enough full grown apnea events to earn the OSA diagnosis.

It's worth trying for sure and you can do it without having to spend a whole lot of money.
We have forum members who sometimes have gently used low hour machines...and there are ways of finding a suitable mask that won't cost a small fortune either.

[TropicalDiver]

First, machine naming conventions are awful. The two largest manufacturers are resmed and (Phillips) respironics. Resmed has the air sense and aircurve models and Respironics has the Dreamstation line. But there are many models within each line. Ask here about specific models before you buy. What you want (at least) is a machine that does auto adjusting and records full data. I prefer ResMed (just as other prefer respironics).

So,lets continue with a purely financial calculation. You can buy a (new) autoset for her for about $700 at cpap.com. Alternatively, I have seen used air curve 10 vauto for around $500 (here) up to $750 (secondwind). There are lots of used S9s running around (the autoset or vauto are two good models) at much lower prices (they are a generation old at this point). You will need to buy a hose (if it doesn't come with) and a mask. Almost any mask will work with almost any machine. The challenge is finding a mask that will work with you!! Masks come in many styles and sizes -- fit and a style that works for you are crucial.

So, for less than a $1k (heated hose, mask, a few filters) you have everything you need to start.

Now, the real question, what would a new sleep study tell you? If the primary goal is to see if you could get insurance to cover your device, that does not seem like money well spent. If it was something that allowed you to try a variety of masks, and help with titration, that would be valuable. It is up to you think about the cost/benefit there.

So if your sleep doc is willing to write the script now....

[palerider]

Here's a chart: wiki/index.php/CPAP_models

and some simple guidelines.

"full data" is a *must*.

Auto is a big big plus.

Resmed machines tend to give you a much better feeling, and better results.

That should narrow it down

[ChicagoGranny]

if you were a family member of mine I would have you try the ResMed AirSense 10 AutoSet for Her machine.

+1

[jnk...]

. . . lift weights . . . exhausted . . . short of breath . . . can't concentrate . . . always been very twitchy/jumpy . . . light to moderate shakes . . . Anything that touches my hair/head . . . I "jump" . . . body reacts in a jerk fashion than most people's. . . . pillows were way too high, their bedding blanket felt like sandpaper . . .

Some highly sensitive people who often find themselves on high-alert and who notice and are greatly affected by environmental conditions find that certain drugs (alcohol/caffeine/OTC/Rx/other) and supplements and foods tend to heighten their sensitivities rather than calm them.

You may find some benefit from exploring some of Dr. Barry Krakow's ideas on some related matters: http://www.sleeptreatment.com/index.php ... sound-mind

[Mr Nosey]

if you were a family member of mine I would have you try the ResMed AirSense 10 AutoSet for Her machine.

+1

I have a ResMed AirSense 10 AutoSet and like it. I also have an Intellipap Auto and like it...with it being much cheaper, so if price is an issue (and insurance does not always pay for the entire cost), you can do better than the Resmed.

[Arlene1963]

I have a question related to this sleep study.
What causes spontaneous arousals and will these diminish with XPAP? There are arousals reported as respiratory and there are ones simply reported as spontaneous. How does one address/treat the latter? I understand that XPAP very effectively treats respiratory ones, but am not sure how the spontaneous ones are resolved.

[Pugsy]

What causes spontaneous arousals and will these diminish with XPAP? There are arousals reported as respiratory and there are ones simply reported as spontaneous. How does one address/treat the latter? I understand that XPAP very effectively treats respiratory ones, but am not sure how the spontaneous ones are resolved.

Spontaneous means no known cause. Essentially means crappy sleep quality and we don't know why and we don't really know how to fix it because we don't know the reason why it is happening. To fix a problem we first have to identify the cause of the problem.

What we hope is that with cpap and the addressing of the respiratory related arousals that the patient experiences some improvement in the reduction of unwanted daytime symptoms. Sometimes people get lucky and sometimes they don't.
My thought about all this stuff....the maybe it will help stuff....is that we know how we feel if we don't try it and maybe we can feel better if we do try it. If we do nothing we know how we will feel....but maybe doing cpap will help. Sometimes a "maybe" is better than no option at all.

[D.H.]

According to current guidelines, you do not have Sleep Disordered Breathing. However, I don't trust the guidelines. Eventually, I think that they will change. However, I don't think you want to wait until "eventually."

A new sleep study would likely come out the same, so no sense bothering.

You can get an automatic CPAP for somewhere between $500 and $800 (U.S.). You can get a second-hand one for somewhat less.

BTW, it's very important that you get the right mask for you; perhaps even more important than the machine!

[jnk...]

In the case of “spontaneous” arousals, one would presume that these arousals are associated with some physiological event. We just don't know what the event is or the stimulus that triggered the response of the nervous system. Even noting an association does not necessarily mean causality. Until we are truly measuring the inciting drivers at a more basic neuronal level, we are only looking at shadows of other events. . . . However, the clinical significance of these events either in the short term (the restorative nature of sleep) or long term (cardiovascular outcomes) requires further study. Hopefully in the future more clinical information will be available to better understand how to identify arousals and understand their significance. -- http://jcsm.aasm.org/viewabstract.aspx?pid=29978

My understanding is that PAP therapy can have a calming effect in the long run on the nervous system of some people with very low AHI. For others, PAP appears to heighten sensitivities in a way that becomes and remains detrimental to their sleep.

[ChicagoGranny]

if you were a family member of mine I would have you try the ResMed AirSense 10 AutoSet for Her machine.

+1

I have a ResMed AirSense 10 AutoSet and like it. I also have an Intellipap Auto and like it...with it being much cheaper, so if price is an issue (and insurance does not always pay for the entire cost), you can do better than the Resmed.

I would definitely go with the ResMed. The initial purchase cost spread over 60 months or more is not so much difference. If he has trouble settling on a mask, that could run his costs up.

[starrynight40]

Yes, I have been researching OSA and UARS for months trying to figure out more about what I have. I'm finding that many people with OSA and other sleep issues seem to know more about their condition and the condition of others than the actual "sleep doctors" and "sleep techs" who seem quite clueless. A lot of their knowledge seems to come from trial-and-error trying to correct their own issues. Their doctors weren't helpful and they went searching for themselves. Also, my understanding is that UARS was discovered in 1993 and coined by a specific sleep doctor and medical team. They apparently examined patients under anesthesia who had OSA-like symptoms, but didn't have OSA. A lot of the sleep industry itself doesn't seem to recognize UARS and I find this to be disturbing. A lot of people with UARS seem to have trouble with driving and are a major accident risk on the road. The sleep clinics tell them they don't have OSA and that their insurance doesn't recognize UARS as a condition. If they don't go to another doctor or can't get a prescription for CPAP (or can't afford to pay out of pocket), they may end up with a shortened life and not even know why. That bothers me. My sleep doctor never mentioned UARS at all. Neither did the sleep tech. Even discussing our results, the term was not in his vocabulary, so it looks like a lot of sleep doctors ignore it unless it is directly attributable to OSA/CSA. I don't care for the medical world's approach..."Oh well, you don't have Sleep Apnea. Just try to get better sleep!" In his office, my sleep doctor has a sign that says, "I do not prescribe sleeping pills because they are not good for you." When I asked him about taking 3mg of melatonin, he said, "Sure! You can take even more than that!" 3mg (a common single tablet) is actually many times more the dose that the body naturally produces. So I get the idea that sleep doctors just make up stuff sometimes. He didn't seem to care either way...it is me that has the issues, not him. Couldn't be bothered.

It may be possible that if I would have slept more than the 2.75 hours at the lab that my AHI would have been higher. The sleep doctor was useless to me. Given the results from my personal SPO2 monitor that showed a normal heart rate until I had been asleep for x number of hours, that seems to back up my idea that it takes a while for my symptoms to kick in during deeper sleep stages. I didn't sleep very long for the study, so the results may have been skewed and the whole study location and sleep tech were just unprofessional and didn't have things together.

I'll be footing the bill out of pocket anyway and will just buy a new CPAP and accessories from the start because I'm a bit of a germaphobe for personal stuff like that. I have actually been researching and planning to get the ResMed Air Sense 10 for quite some time now because it has the auto ramp feature and keeps records to let me know how it is working. With or without insurance payment, I wouldn't have wanted a titration study in the lab.

As for the ResMed AirSense 10 AutoSet for Her machine...I'm not sure how that works with the prescription. When I called the sleep doctor's CPAP clinic the other day asking for a prescription, she quoted the ridiculous amount to buy the machine directly from them and then she said I could buy it through a number of websites, which she recommends to a lot of people. So that indicated to me that they would write a prescription for one. What happens if I need another prescription in the future, however? Would I have to have another sleep study elsewhere? Do they write it for a specific machine type or just write a generic prescription for a CPAP that the doctor approves of? I don't have a problem with getting the "for Her" AirSense...just wondering if they would need to specify that on the prescription. That could be a bit awkward. As for the mask, I have asked around at various places and a lot of people recommend the P10 Nasal Pillow mask given that I may not need that much pressure to overcome whatever is happening. I also like that it is less intrusive, but I have read where some people complain about the exhale holes not being big enough somehow and it caused issues with them feeling like they were suffocating or drowning because they couldn't breathe out quickly enough through it. As for the partial face mask, I have read that it tends to leave marks and can be noisy. The full face mask...a lot of people complain about how tight it has to be, the marks it leaves and the noise. I think I'll try a nasal pillow mask first. If I think it isn't working, I'll buy others and give them a try. I'm making a decent amount of money now, so I'll buy my stuff as time permits.

Whether I have OSA or UARS, it obviously isn't a full-on blockage; or if it is, I'm literally waking up right after the airway does get blocked or narrows and my oxygen level isn't dropping. We know that for sure via the lab study and my personal monitor.

What would a new sleep study tell me? Possibly nothing new, which is why I don't really want to fork over $2,000 or more under the impression that I might get some drastic results that would tell me exactly what was happening. I already know that insurance won't cover it because I literally just got hired for the job 1.5 months ago and everything is new with no deductible met. In a new longer study, I would imagine that some numbers may go up and down like the AHI or RDI, but the way I see it...I'd still end up on a CPAP whether for UARS or OSA. I don't like the idea of a dental device that my sleep doc told me he uses. Too many people say it moves teeth and I have had far too much dental work over the years to be messing that up. Plus it may not be my tongue blocking my airway. Could the soft palate, nasal sinus area, etc. Just too many variables that irk me.

If the CPAP didn't help for some reason...theoretically, couldn't I just sell it for a reasonable price like so many other people do? I have read a lot of stipulations about it being supposedly "illegal" to sell a CPAP machine and such. Don't know anything about it, however.

"Some highly sensitive people who often find themselves on high-alert and who notice and are greatly affected by environmental conditions find that certain drugs (alcohol/caffeine/OTC/Rx/other) and supplements and foods tend to heighten their sensitivities rather than calm them." I drink a soda once in a while, but try to limit it to no later than early afternoon sot hat it doesn't affect my sleep. I have never used alcohol or any regular regimen of OTC or prescription drugs. My twitchiness/jerks...she said I should have an MRI of my back. I should also note that my mother's mother (my grandmother) has had very bad shakes for about half of her life. My mother also has these rapid-fire jerks, but hers started in her 50's and affect her head and such. She gets core full-body jerks in the car when she drives, so she jumps like half of an inch in her seat every few seconds, as if she just got shocked or something. Not sure what that is, but she has had it for a long time and it seems harmless. She probably told her doc about it, too. It may just be anxiety for her, but she does it all of the time. So my family may have other neurological issues when it comes to the muscle movements that got passed down. I don't feel that this is the cause of my breathing struggles, however. My grandmother might have a light case of Parkinson's based on a doctor years ago. My mother may have a pinched nerve that causes her neck twitches. Her body jerks and twitches get worse when she gets nervous or is around a lot of people, which is common with Social Anxiety Disorder. Also, she has back pain a lot, so it could be a pinched nerve or something. She also has OCD quite badly, so it could just be a nervous tic/habit that she has developed.

I had "the shakes" when I was in elementary school. Most doctors seem to consider that it is a benign "essential tremor" for unknown reasons. If I'm well-rested, they're barely noticeable. Still unsure if mine are caused by not sleeping well since I was a kid.

As for my tibial torsion/leg issues...my tendons in the bottom of my feet are sore and feel tight as soon as I wake up, before even getting out of bed. I'm starting to wonder if poor sleeping in my pre-teen years didn't cause those to pull tight and not repair themselves properly at night while sleep and the tendons ended up bending the bones a little in my younger years. When I was doing research into my sleep issues, I came across a video of a young boy who was maybe 5 years old that had Central Sleep Apnea. He jerked awake sometimes seconds apart, so I guess my speculation isn't too preposterous.

Everything I deal with seems to be sleep-related and must have been for a long time. Even the pain in my legs/knees is there when I don't sleep well. When I sleep enough for the tendons to repair themselves, nothing hurts. I get this odd, almost sickening-like headache in the left back side of my head when I'm already super tired and I sleep poorly on top of that. Several days of bad sleep plus a horrible day of sleep on top of a 12-hour work day and I'll get a headache in that certain left back portion of my head. It is sort of a cold, numb-like headache. Very hard to describe. No reason to suspect anything majorly wrong medically (e.g. stroke, broken blood vessel, etc.) and that has been a common thing for years. It rarely happens because I catch up with rest enough to not get the headache to begin with. Not unbearable, but it is there and always goes away when I get a little more sleep.

Curiously, I had a friend mention playfully, "You've been missing sleep for all of this time and your brain is used to working on low sleep. If you've done all of this with low sleep, think of what your brain will be able to do when you get fully rested!"

Is there any actual basis for this? Right now at work I am training on 30-foot manufacturing machines that are crazy complicated. I'm basically training to be a production operator/light duty mechanic of sorts and will be rotated around a warehouse to learn every machine that they have over a year or so. There a lots of them that vary in so many ways. School was certainly horrible for me academically. Couldn't focus in class and didn't understand a lot of the work due to being so tired. Even among my personal hobbies and home life, my brain has struggled with some things and yet excels with others even when exhausted. Will I theoretically "gain" better processing/abilities once I start sleeping better and it gets a lot more rest? Has anyone experienced anything like that? I suspect this has been ongoing since pre-teen years and I may not have experienced my full potential mentally. I played guitar on and off for about 17 years, but sold it because I felt like I didn't have the energy to play anymore and I just couldn't focus enough to play or memorize anything. Yet I can go to work and run circles around people fixing machines and such. At the same time, my measurements are all off...I can't read a tape measure properly at home to cut a board because my brain isn't thinking well enough to convert/remember the measurements. All of that seems to be related to my poor sleep that I have had for half or more of my life.

So I'm just curious if anyone has had a life-changing point where they had sleeping issues since they were a kid and got it corrected as an adult. How did your life outlook change?

[Pugsy]

It's not illegal for you to sell your own personal machine to anyone. It's also not illegal for them to purchase it.
What DME's and doctors can't do is sell one without a RX.

The prescription itself can be rather generic and you just specify which brand and model if you wish.
A lot will depend on where you want to purchase the machine.

A generic cpap RX will allow you to purchase a machine with auto adjusting modes available from most online retailers. We call them apap machines but actually an apap machine is a cpap machine with additional modes available.
Now if you are wanting to buy from a brick and mortar store...might need to be more specific to get them to get you want you want. They typically will stock only one brand (the one they get the best wholesale contract price with) and tend to drag their feet on special orders because they don't make as much money on those. They also tend to be stick in the mud about a cpap RX letting a person get an apap but they could do it (and be legal) if they just would.

The for Her model I mentioned costs the same as the regular AutoSet.

So how to word the RX and still keep it "open" will depend on where you want to get the machine from.
Our forum host is cpap.com....big name in online cpap supplies. They will require a RX to be on file with them but it doesn't need to be brand or model specific to get you the "for Her" model.
A nice generic RX would say something like....
Auto adjusting cpap with heated humidifier and mask of patient's choice at pressure settings of 5 to 20.
That will get you any apap machine you wish from just about anyone.

Oh...just a word of warning...don't assume that you won't need much pressure to resolve UARS. From what I have seen from people who do really have UARS they typically need higher pressures than what someone with OSA might need for them to actually feel better.
You won't be able to rely on the data so much from the machine as much of a guide as to what pressure is working well.
It's not really designed to give you the kind of data that UARS patients might be able to use. It's really designed for data about OSA and your AHI is very likely already going to be low to start with. AHI isn't likely going to be much of a guideline for you to go by.
You will need to be more subjective in your evaluations and not rely on the data points as much.

[starrynight40]

How long is the prescription generally good for if they keep it on file? I would purchase online.

Also, is the "for Her" model going to have any direct indications that it is for a lady? I don't think it is going to be pink or anything, for instance. Probably just a little logo on it and the screen lighting seems to be a shade of purple or something vs what looks like blue for a guy. Is that the only difference?

If the "for Her" has a setting that is extra...will the other two "for Her" settings be as strong as the regular model? It sounds like I may need to be open for more pressure while also trying lighter pressures at first to see. Just want to make sure that both are on-par with the same strength capabilities when it comes to the higher pressure settings, if needed.