singingkeys

I am a guy, 5'8 and 160 pounds. My neck size is 15.25". I could lose 10-15 pounds and still be within a reasonable weight amount, but I'm more stocky/muscular and probably 10-12% body fat. I used to lift weights a lot and such back when I actually had the energy to do so. That sounds more like what I fit in with...not really overweight and still have issues.

Ah, good 'ol Murphy. Fortunately I haven't had him visit me too much. I guess we all just have our own burdens to deal with.

I tend to overthink. It's just one of those things for me, I guess. For instance, I already require glasses/contacts just to see properly. Both of those are "tricky" because you have to get a new prescription when the old one expires and the new optometrist may not be as lenient as the last. One eye is different from the other and they always want to make them different when I go to a new person, but it causes headaches. So they play with the prescription and I end up going back getting them both corrected to be the same for both eyes. I guess I feel like this could be the same way for APAP and sleep stuff in general. You get the right prescription you need and then it expires in x years and you end up having to have another study or the same doctor isn't there/retired or whatever. Then you jump through hoops to get what you need again. Probably will need to start wearing a mouth guard soon. I also have trouble with my legs and walking is even more uncomfortable on the days when I don't sleep well enough. Everything seems like it is "tricky" and a handicap of some sort to always make life a little more difficult, as if it isn't already. lol

I guess I feel like I'm falling apart sometimes or something. :-/

So when I do get a machine and start getting proper readings to find out exactly what I'm dealing with and why my sleep is so non-restorative:

Whether it is Obstructive Sleep Apnea (which I understand to be the airway closing off with or without oxygen desaturation), Hypopneas (abnormally slow or shallow breathing), RERAs (simply being aroused lots of times due to being awakened to breathe), UARS (narrowing/collapse of the airway to cause RERA's/Hypopneas), or snoring...is APAP pretty much going to be a "stuck for life" thing? How do people get over the shock of that? A lot of people say APAP/CPAP is like a bandaid cover for the problem instead of fixing it, but in actuality, I'm not seeing those same people stating an actual solution that works. Is it just non-existent in today's medical world?

I'm a little familiar with UPPP, or (Uvulopalatopharyngoplasty) aka Sleep Apnea Surgery where they remove tonsils, scrape extra tissue from the back of the throat and remove the adenoids. Doesn't seem to stop people from having sleep apnea and is very dangerous to have or can cause even worse problems with breathing, eating and speaking. I have read where some people go as far as to have their tongue basically cut and moved forward in their mouths because they felt like the tongue fell back and blocked the airway. I've had my turbinates reduced and also deviated septum fixed and airways enlarged. Didn't help my sleep issues, but helped my general breathing. For something like UARS, I'm not aware of anything they can do to physically help an entire upper airway that could be collapsing/narrowing, for instance. I guess they could attempt to put some kind of permanent tube in it to keep the airway open (much like tubes in the ears)...but doesn't sound feasible. If it is RERA's that can't fit into the Apnea or Hypopnea categories, is this going to end up with neurology and taking a pill for life instead of APAP? Will there be no physical way for me to stop using the machine when an issue is discovered for sure?

Just trying to get my mind used to what it will be like tethered to a machine for life. It gives me sort of the mindset of being naked and vulnerable in life because I'd be depending on a machine to sleep properly. Granted, I will of course need to try it anyway. My girlfriend has a disability (sleep terrors and possibly another sleep issue), but we don't live together. Her dad has OSA for sure. She says she doesn't have it, but I wonder if she actually does in some form because I have read that night terrors can have links to it. Apparently she wakes up screaming and such, struggles with anxiety and a variety of issues. Then I picture if we ended up getting married someday...both of us would have sleep issues and literally have to have separate beds to keep from driving each other crazy with our sleep issues. Yikes. That's a lot to process.

That's probably best, anyway. I can be at home in my own bed and don't have to ask a sleep rep to get up and go to the bathroom or whatever. They literally had an attitude whenever I asked for someone to come unhook me when I needed to go to the bathroom. Then I read later that constant arousals like that actually cause you to have to go more often, which they obviously didn't know about or they knew and didn't care. Sounds like I just had a horrible place to have a study at, but that was the place that was recommended. Alright, that's going to be my goal, then.

So it looks like I'm going to need:

The machine itself, a hose, a mask, filters and what looks to be distilled water for the humidifier built in. Am I missing anything else? Going to start prepping a list. I see that on the website I linked to above, it says I need a prescription to buy a mask from them. Sounds a bit ridiculous. I'm going to have to figure out a way to have the sleep doctor write a prescription for the machine and a nasal pillow mask to start with (or is the machine prescription itself a catch-all for all accessories?) and then if I think I need a different type of mask later I might have to ask him to write one for that.

I'll try to get the For Her version and start out with a nasal pillow mask as soon as I can buy them. I'm going to try to get the prescription from the sleep doctor tomorrow so that at least I'll have that. One of the things concerning to me is that even sitting up in my chair or laying down in the bed during the day for a quick snooze...I reach a point where I feel like my lungs become "lazy" and just don't want to breathe very hard or they just prefer the "relaxed" feeling of resting/not breathing vs breathing. It just feels like a lot of work to breathe for some reason, so my breathing becomes quite shallow and I'm not sure if it is keeping up enough to provide my body with the right amount of oxygen needed while I'm sleeping. I've never had any lung issues, so maybe that is just like that because I'm so tired and that's how my body responds. I hope I'm not doing that all night, though...like shallow breathing that gets smaller and smaller in breaths until I just stop breathing because of that feeling of the lungs. If I went to a pulmonary specialist, I would probably pass every test and they would say that nothing was wrong with me, so that's also discouraging. Maybe it is just a byproduct of not sleeping well enough and so when I do start resting it feels like I'm not getting enough air in general. I yawn an awful lot throughout the day. If I'm active, then I remain active...but if I sit down, I want to fall asleep. At the follow-up appointment after the sleep study when the sleep doctor told me that I didn't officially have sleep apnea...he also noted that it "was a good thing that I had a job where I was active and moving around, because if I had a desk job, I would be falling asleep." Boy was he right about that. I presume he was going off from the 18 RDI alone and the unclassified RERA's. That was when I had a job where I was walking 5-8 miles a day. At work, I have a fast-paced manufacturing/production job, so I am physically awake...but I wear down quickly and I'm not as alert. Sometimes I feel like there's a little fluid in my lungs or something (almost like I feel a slight rattle when I breathe sometimes), but only on days when I don't sleep very well. I'm not one to get sick with a lot of colds/allergies or anything.

I found an Airsense 10 Autoset For Her w/ HumidAir for $659 new. They have some other accessories and add-ons to pick from. That's the lowest price that I have found for a new one (absolutely not buying used) online. That's a whole lot better than the $1,800 or so that my sleep doctor wants to buy it from their facility. Even the lady working there told me to buy it online because their price was ridiculous.

Well, my respiratory data was quite interesting:

As we noted, 13 unclassified hypopneas added to 37 RERAs in the 2.75 hours of sleep. They base their hypopneas on 3% or greater desaturation. I also see 41 snoring episodes 14.86/hr snoring index. I didn't hear that much snoring when I have recorded myself, however. In another area further down, they noted 45 RERA's.

Interesting, for "Obstructive Hypopnea" and "Central Hypopnea" they had 0 for both. Mine were unclassified at 13. If it isn't central or obstructive, what the heck else is there? I would guess something like neurological, but they also noted that there were no PLMS (Period Limb Movements of Sleep).

I'm definitely not as alert as I should be and I am nothing but purely tired from the moment I wake up until the time I go to bed. Curiously, my lips always feel super chapped and are visibly red for a lot of the day even when they aren't physically chapped, as if my blood pressure is up or something. Yet it tests fine when I check it and my blood pressure is normal with a pulse rate a little higher than normal. I'm to the point where I'm about to just ask the sleep doc for the CPAP prescription and buy my own online. I saw one sight where they had it for about $600 and of course I'd need the mask and whatever other accessories, so probably $700-$800 and just start trying it to see how I do. My sleep is not restorative at all and I just fall asleep in my chair every single day watching a 10 minute video on the computer. Until I can pay for an actual sleep study later to find out exactly what is going on, I may have to buy one to get me through. I'm having major concentration problems now and even on days when I can sleep in, it is like my sleep isn't working to recharge my body. I wake up with red lips, puffy/red eyes that look swollen and I have no energy. Just isn't happening.

The hardest part is that I just don't know what I have that is making my sleep bad. That last study...I honestly didn't even remember going to sleep at all that night, but they said 2.75 hours. It seemed like I laid there the whole night awake. Their graphs showed different stages of sleep. I think the 40% efficiency is probably right. That's about what it feels like.

I can get the CPAP prescription, but what if I have something like Central Sleep Apnea? It can be hard to concentrate on work sometimes because I'm so tired and not alert, but yet that's the work that will give me the money for a sleep study to start treating it, so catch-22. If it is Central Sleep Apnea, I see where CPAP is used to treat it sometimes and them BiPap at other times. Tax refund time is coming up, but that's weeks away at least and the government shutdown is making it take longer. :-/ But if I get CPAP and it doesn't work, I'm back to square one and still not sure what the problem is.

If we consider possible UARS or CSA...is there anything else besides OSA that would cause all of this?

My high RDI and low AHI still seem to point towards UARS, as Sierra has suggested before. I have found direct evidence in research online where articles specifically state that UARS is usually the case when there is a high RDI and a low AHI.

Without a doubt, something is seriously wrong with me. Around the beginning of 2018, I was having feelings in my chest kind of like a cramp, but I also felt like I just couldn't get enough air and constantly yawned, got chills and such. When they did the blood draw at a clinic, I fainted for 15 minutes and woke up with blood everywhere and the whole clinic staff in there. Blood pressure shot down to 60/60 and 52bpm pulse. I've never faint or had any issues with blood draws and I have had a ton of them throughout my life. I even followed up at my primary care doctor a day or two afterwards and had a blood draw with no issue whatsoever. A lot of people have told me that tiredness from sleep apnea can't cause fainting. No cause for that was ever known and doctors basically swept that under the rug as one of the "we don't know what happened" things. Haven't had issues since, but I do feel heart flutters/palpitations on days when I don't sleep that well. I might "get" 7 hours, but at 40% efficiency, I'd be getting more like 4. So yeah, I hoping to get to the bottom of this. I could get the prescription right now based on the previous sleep study, but it sounds like I might have a little more going on. That kind of scares me to just get a machine and assume it will take care of everything. When I'm really tired and just sit back in my chair upright and doze, sometimes I feel like drifting off to sleep upright closes my airway until I pop awake. But other times, it literally feels like my lungs just don't want to use up the energy to breathe hard enough, so I'm wondering if my breathing doesn't get shallow for some reason while sleeping. That may just be because I have compounded so much tiredness over the years that I'm running on empty for energy, but who knows. Meanwhile, the study can take a peek at the EKG and all of that at the same time.

My concern would be that your symptoms seem to be excessive for mild apnea. You may have to solve more than just apnea before you get the outcome you want.

Well, I've been to an ENT doc, have had an MRI of the brain (normal) that happened to pick up a deviated septum with side spurring. So the ENT doc saw that and requested a CT scan of the sinuses. Swollen turbinates and deviated septum. Corrected via surgery and successful in July 2018. That made the airways in my nose too small, so it basically took long to inhale/exhale and made that easier. However, it didn't improve my sleep. Didn't want to bother with UVVV surgery - far too risky and I've known two people (one of which nearly bled to death) that had it done and it failed, so they had to go back for emergency procedures to stop bleeding. Didn't want to mess with the mouth device...looks very uncomfortable/possibly worsens TMJ (which I already have a bit of) and moves teeth. Had a lot of dental work in the past and don't want to move anything around again. Then there was the neurologist. We didn't get to the MRI of the spine because my insurance had a ridiculous amount of stuff going through it and they didn't want to pay for anything else. I went to the primary care doctor before all of the above and they checked a full blood count, thyroid check and all of that. It was all normal. My heart rate tends to be up during the day when I don't sleep well and I will also have some nights when I'm going to bed and I feel like a pressure in my hands and/or face like my blood pressure is high during those specific two areas only. But when I check my blood pressure with the auto machine that I have, it is normal.

My concern is the "jumps" and there have been times in my sleep when I have had those (possibly just hypnogogic), but not that much. I also get them during the day on certain days and they are core jumps. I'm much more jittery/jumpy when I'm tired in general. I'm still in the process of researching another sleep facility in my area that will check for some of the other things that all of them don't check for and will consider RDI in diagnosis. I have a light essential tremor/shakes that I have had since I was a kid. I have always been very "jumpy" in general in regards to random jerks. A solution was never found. So I'm puzzled. With such a low sleep efficiency and a moderate RDI, I feel so bad for it. Running out of options.