Boy have sleep therapy machines changed!

[jonquiljo]

And it hasn't really been that long. I'm new here so I will post a brief synopsis of my situation.

I have never been able to spend the night in the same room as my wife in the 20 years I have known her because of my snoring. Apparently it is very loud, though I have never really heard it. It has been described to me as "awful", "horrible", and lots of other things by people over the years. I've never had a dog who would sleep in the same room as I was either.

In 1996 I went to an ENT who told me that I needed my uvula removed along with some of the soft tissue in my palate, etc. Like an idiot I let him remove it with a laser. I have never been in so much pain for such a long time! The procedure did nothing. A year later I went to a sleep Dr. and had 2 sleep studies done - I think the first one was to diagnose, and the other to determine pressure for CPAP. Apparently I was told that I snored excessively and that I had "borderline apnea". I don't think back then sleep centers were too good at doing things. I was prescribed a CPAP machine and got it and used it for a while. It was "Respironics Solo". Well, it felt like I had the reverse end of a vacuum cleaner shoved up my nose and it made me feel worse. It did stop my snoring, but I couldn't tolerate it for more than 2 or 3 hours at a time - and I kept adjusting the pressure to see what would help. Nothing did and it ended up in a closet.

Now, almost 14 years later I have been noticing my blood pressure creep into the borderline high area over the past few years even though I am pretty athletic (still) and have regularly done cardio workouts for about 25 years (I am 57). I am always tired these days and it gets annoying after a while. I have ADHD and have taken meds for that on and off for many years. If I get tired, it sometimes will help to go up a bit for a day or 2. But they don't do much good in that respect. Even though most of my palate was removed years ago - they all neglected to look at my nasal passages which are so tight that I cannot easily breathe through my nose during the day. Once I had to have a GI test for esophageal pressure and the Dr. needed to thread a thin catheter through my nose and sinus into my throat and down into my stomach. He had been around a while and he was totally stumped by the fact that he (after his nurse failed) to get it very far. He ended up putting it directly down my throat.

I had an ambulatory sleep study done a month ago - to figure out what was going on. I knew pretty much I probably have apnea as it runs in my family (my mother is 85 and I remember as a child hearing her snore like a foghorn) and I have all the outward symptoms plus the nasal passages of a mouse. I had to have an ambulatory study as staying away from home is not easy as my wife has a severe spinal disability and pain problem. I am needed more often than not and asked to refrain from a sleep center study unless totally necessary.

According to the report, I have "moderate" apnea, with mostly hypopneas. My AHI was only 13.4 - 10.3 of which were from hypopneas. I wouldn't have thought twice, but my o2 sat dropped to as low as 78%. I was 108 min (of 407 total) below 95%, 3 min below 90%, and 1 min below 85%. And the day of that test, I actually felt OK after sleeping. Many days I feel like I have been thrown down a flight of stairs and the bed is totally torn apart. I even develop serious sprains and tendinitis from what I do in my sleep, so it must not be pretty.

Sorry for all the background, but does all this really mean that I need to use a CPAP machine? I got a new one - set for APAP to make it less uncomfortable at night. I've only used it a few nights but it is amazingly comfortable - especially compared to what I was used to in the 90's. According to my machine - my AHI is down to about 1.0. I will have software in a day or two and hopefully will see a bit more information as to what is actually going on and if it will help me. I suppose I should get a recording O2 monitor - but may wait until I see if CPAP even improves things at all. I will say, however, that the new machines (I have a Respironics system one auto cpap with humidifier) are light years more comfortable than 14 years ago.

If I can sleep better, my eventual hope is to have nasal surgery (if I can find a surgeon who can convince me that they know what they are doing) to relieve the problem totally. I do have a friend who had this done and he has greatly improved. He still has weight problems and is totally inactive when it comes to exercise, so I don't know if his results are optimal. I guess I am ahead in that game. Right now, I just want to be able to stay awake during the day without it being a constant fight.

Thanks if you have read so far. Any comments will be appreciated. An AHI of 13.4 is not very high - so I am not sure of the reality of all of this. But my going to 78% O2 sat during the night is not good, so something must be wrong. I generally have a resting O2 at about 98% or 99%, so even below 95% in my sleep I would presume is not good.

[Julie]

I think you need to see (at least) a neurologist to be investigated for possible night time, sleep related problems that may or may not have anything to do with OSA. There are a bunch of things you (or even your other MD's) wouldn't necessarily be aware of as they are not common or properly diagnosed except by specialists (neuros). You may have OSA along with other sleep problems and need to get it all sorted out.

[jonquiljo]

Can I have a hint at what some of these problems might be? As far as I can tell I have a "tight nose" and am obstructed that way. The REM thrashing is probably the most disconcerting, but it seems to be reduced by 80% in my few days of APAP.

The snoring has been my biggest problem - again my nose problem. I guess I don't know what can possibly be of issue given these are all relatively long standing problems.

I try to avoid new Dr.s, unless I have a good reason to see them. They can often send you down a really obscure path to nowhere. Now if I had an idea of what you were referring to, it might help. If they are potentially dangerous - then so much the better. Thanks.

[Julie]

I'm talking about things LIKE 'night terrors', somnabulism (sleep walking), sleep 'paralysis', and a bunch of other somewhat less well known conditions that could possibly affect your sleep. I'm aware of these having worked for years in neuro depts with MD's, but am not an MD myself so don't want to start guessing long distance at what could or could not be going on, but you're only cutting off your own nose to spite yourself if you don't at least get an professional overview - then you can decide to reject what they say once you've heard it. You can drift around the internet til you're seasick, but all you'll end up with is a mish mash of personal opinions, many based on testimonials from other nonmedical sources (or third hand accounts of second aunts twice removed stories) but there's a reason people go to 'real' doctors and self-diagnosing will just cheat yourself.

[Janknitz]

Yes, it sounds like you do need CPAP and you should find great improvement from using it. Even though your AHI is not too bad, the snoring and restlessness in your sleep indicate that you are on a continuum that can be headed off with good treatment. You should notice the improvement with continued use of the machine.

If I can sleep better, my eventual hope is to have nasal surgery (if I can find a surgeon who can convince me that they know what they are doing) to relieve the problem totally.

Remember there is no guarantee that such surgeries will "relieve the problem totally". You need to consider this carefully before going under the knife. Make sure you thoroughly understand how your surgeon defines success, and talk to others who have had the surgery to see how many were actually "cured". Finally, if you do have surgery, understand that absence of snoring doesn't necessarily mean that the "problem" is relieved. You will need another sleep study to confirm that, and frequent checks to make sure that other factors don't make your sleep apnea come back.

[GumbyCT]

Can I have a hint at what some of these problems might be? As far as I can tell I have a "tight nose" and am obstructed that way. The REM thrashing is probably the most disconcerting, but it seems to be reduced by 80% in my few days of APAP.

The snoring has been my biggest problem - again my nose problem. I guess I don't know what can possibly be of issue given these are all relatively long standing problems.

I try to avoid new Dr.s, unless I have a good reason to see them. They can often send you down a really obscure path to nowhere. Now if I had an idea of what you were referring to, it might help. If they are potentially dangerous - then so much the better. Thanks.

I wonder if the nite thrashing could be caused when your o2 drops? I think that would cause all kinds of problems.

[jonquiljo]

Finally, if you do have surgery, understand that absence of snoring doesn't necessarily mean that the "problem" is relieved. You will need another sleep study to confirm that, and frequent checks to make sure that other factors don't make your sleep apnea come back.

Oh yeah - that's a given. I am just wanting to get this "cotton up my nose" feeling gone. Especially when I work out - it feels creepy. I don't ever remember being able to breathe through my nose with enough force. It's like I am always congested.

[jonquiljo]

I'm talking about things LIKE 'night terrors', somnabulism (sleep walking), sleep 'paralysis', and a bunch of other somewhat less well known conditions that could possibly affect your sleep.

Thanks, but I'm not going to deal with any small-probability issues until I have a reason to. I've got too many people and things to deal with as it is. I am starting with the obvious - CPAP and breathing. After that, if there is still something affecting my life quality I will think about it.

[nosenabook]

Sorry for all the background, but does all this really mean that I need to use a CPAP machine?

Yes.

CPAP/APAP therapy helps to lower blood pressure; keeps the blood levels of oxygen high; helps alleviate that early morning tired feeling, headache, and grouchiness; reduces AHI; reduces daytime drowsiness.
After a night with APAP, is your bed still torn apart? If not, you already know it is doing something helpful for you.

About the time of your initial diagnosis, I was getting sinus surgery to enlarge my nasal passages and improve drainage. The surgery wasn't fun, but the near constant sinus infections and continual sinus headaches did clear up. The pain went away. It was a good thing for me.

A couple of things I can tell you about this surgery:
Sometimes it needs to be done more than once in a lifetime, so it isn't (necessarily) a permanent fix.
My sleep issues might have been put off a few years by the surgery, but I don't believe they were changed much - I already had several signs of sleep apnea.

My family doctor had the same thing done by the same ENT surgeon, so it was easier for me to trust the surgeon.
This is a good thing when someone is poking around in your head with sharp instruments!
Another point is that it is often worth going out of your way to get a second opinion, especially where surgery is involved.

Keep reading the forums, you will find descriptions of other people's symptoms and some will match yours.

[Emilia]

I find it interesting that you are using a nasal mask when you say your nose is so hard to breathe through. I would think you'd be using a full face mask to accommodate mouth breathing. Also, with a nasal mask, how are you stopping the snoring? Are you taping or using a chin strap? Just random thoughts as I read this....

[jonquiljo]

I find it interesting that you are using a nasal mask when you say your nose is so hard to breathe through. I would think you'd be using a full face mask to accommodate mouth breathing. Also, with a nasal mask, how are you stopping the snoring? Are you taping or using a chin strap? Just random thoughts as I read this....

I have never liked full face masks. Nasal masks force enough air through to get the job done. My moth always seems to stay shut. If the software I ordered will show up, I may see what is really going on. Years ago I was told that I didn't snore with a CPAP, but my nose is worse now and no one will get near me to listen. The machine is sure a lot quieter! And there is no "forced" feeling - it seems to let me breathe freely. I don't feel like I am being forced by air to do anything. Now the machine (weekly stats) tells me that I am sleeping with an AHI =1 and am >90% at 9.5 (cm h20?).

Is that a large or small amount of airflow?

Would a recording pulse oximeter be useful? I can't imagine dropping below 90% O2 is healthy for someone. If during the test I really dropped to 78% Sp O2 then it was like I was doing a lot of underwater diving in my sleep. In fact, wouldn't someone pass out at 78% o2?

[montana]

My nose gets plugged up occasionally so I use a full face mask. I feel a full face keeps more air moving around versus the nose masks.
Shrug ... maybe that is just me.

[Emilia]

I bottomed out at 76% O2 during my study. And I had a lot of time below 88%. I just got an oximeter and installed the software for it today. I also just installed the software for my machine today.... tomorrow is going to be a day of charts for me! LOL My titrated pressure was an 8, but I got an Auto machine and have it set for 6-10 with Flex at 2. In my study I had an AHI of 16 with all but one event being an hypopnea. So, even without apneas my O2 was very low and I was in the moderate category for OSA. Last night my AHI was down to 3. I feel like I am on track to being better soon. I hope you are too!

[jonquiljo]

Your numbers are similar to mine. When I get the software (tracks for tomorrow) I will see if this thing is really doing anything. It tells me my AHI is down to 1, but I don't really feel any different.

I know this is probably heresy on this board, but I wonder sometimes if all these new things aren't more numbers for us to find problems with. I believe that there are lots of people that need sleep therapy machines, but wonder at an AHI of 13.4 if my Dr. isn't just having me play around with numbers. I got a machine and hopefully I will actually feel better.

Maybe I have unusually mild apnea and will never know. I mean the new machines are soooooo much more easily accommodating than the old ones, but am I going to see a difference with a starting AHI of 13.4?

[nosenabook]

Well I'm trying to be encouraging because it works well for me.

In my first sleep clinic visit, my SaO2 never went below 87%.
Apneas: 2, hypopneas: 84, RDI given as 16.2 (respiratory disturbance index) which is per hour.

This is mild apnea, but the CPAP really made a difference for me and my family. After I used the CPAP machine once, I never looked back. There was a while there, maybe a few months, where I was impatient to feel better, but I never contemplated giving up. If nothing else, it stopped me snoring and we all could sleep!