Desperate for advice

[DancingRT]

I am a respiratory therapist. I have had NUMEROUS sleep studies in the past (for Kliene-Levin Syndrome (AKA SLeeping Beauty Syndrome), CFS and fibromyalgia). The earlier tests showed nothing (except I never went into REM sleep). This past May, a sleep study showed sleep apnea. This SHOCKED me and my sleep doc. I NEVER snore, and didn't during the study, and my sats never went below 95%. I was put on a CPAP of 6-7.
A few months later, I went for a titrate study cause I was still feeling like crap with the CPAP. Results showed MOST apneas controlled with the CPAP, but still have apneas with the CPAP. Even my boyfriend says I still stop breathing with the machine. But leave it to the insurance companies to say I need to use the CPAP for so many days/months before anything else can be done. Complete BS since I would switch one of my patients to another mode (like Bi-level or Avap).
Here is my dilemma...
It does take me a while to get a good seal each night. Regardless of the mask, my skin breaks down. I have woken up NUMEROUS nights with the tubing wrapped around my neck. My boyfriend says I never twist and turn when I sleep without the CPAP, but when I have it on, I still stop breathing, I twist and turn, and wake up numerous times during the night. Confirms why I feel so much worse when I sleep with the CPAP. I feel HORRIBLE and like I never slept with or without the CPAP, but comparing the 2, I feel worse with the CPAP. I can go into a much deeper sleep without the CPAP.
Also, my night sweats have gotten MUCH worse. I DRENCH my pj's and bed now. Before the sweat never had an odor, now, even I can smell I STINK bad from the sweat. My pj's and bed reek I have to shower EVERY morning when I wake up. It is embarrassing Also, I may be sweating bad, but I feel like I am FREEZING!!! My boyfriend says my body feels like it is on fire, but I feel the complete opposite. So cold I can't move, and if you take the covers off, I will kill you. I have learned I need to wait until I warm up again, because twice I have hopped into the shower freezing, and burned myself because the hot water felt good, not realizing I was burning myself until I got out of the shower.
No matter how long I sleep (if it is 3 hrs, 8 hrs, 12...even DAYS-yes, days), I don't feel refreshed. I feel like I can't keep going on like this...I have put on weight regardless of what I do, my energy is close to nothing, headaches are worse, sinuses too...memory, everything.
I have asked my co-workers (RT's and docs) and even a few patients their experience, and my co-workers are stumped, and my patients all seem to feel like they have a new better life with their CPAP...so I am stumped as well
ANYONE WITH ANSWERS OR IDEAS...PLEASE HELP!!! I am desperate!!!

[MitzyG]

You might need to get checked to see if you have some sort of infection because that could make you tired, hot, sweaty etc.

[Julie]

Sweating is a symptom of apnea, especially at night (also a symptom of TB, but unless you know something you haven't mentioned, I would imagine that's highly unlikely, or does your syndrome also have it?). Your pressure is quite low and I wonder if you'd consider trying it a bit higher, e.g. 8-10. But I have no idea what machine or model # you're using and that's important - the full name, plus the model # which should be on the bottom - but don't turn it over without emptying the humidifier first or you'll fry the machine! Also, have you tried other masks, possibly a full face one, just in case you're a mouth breather once asleep and lose all the therapy air that way? It would let your mouth open but not let the air out.

Have you had a thyroid check recently? The crazy temperatures you're experiencing could well be due to a problem there whether or not you have apnea.

And what meds might you be on for whatever reasons? They can often make a difference.

We could help but need more info.

[MitzyG]

one other thing...I was battling the hose at night. I have a custom built bed and I wasn't sure about the hose buddy fitting in. so I got inspired by this:
http://www.cpapsupplyusa.com/Boss-Cozy-Hose-Boss.aspx

But I got too cheap and whipped out the supplies I had - I carry varying Command Performance hooks...this one is the cord holder, then I used two lengths of elastic (I sew so I had a huge roll).
<a href="http://www.flickr.com/photos/24521211@N04/11633324523/" title="Untitled by MitzyDGoose, on Flickr"><img src="http://farm4.staticflickr.com/3827/1163 ... 28e804.jpg" width="375" height="500" alt="Untitled"></a>

it really helps to manage the hose and I can sleep on either side without the hose getting in the way. I also find that the nose pillows are less likely to get dislodged after I used a hair elastic to "attach" the hose to the headband of the mask. It's loose enough so that it could move, but constrained enough that it doesn't move much.

[Lazer1234]

But I got too cheap and whipped out the supplies I had - I carry varying Command Performance hooks...this one is the cord holder, then I used two lengths of elastic (I sew so I had a huge roll).
<a href="http://www.flickr.com/photos/24521211@N04/11633324523/" title="Untitled by MitzyDGoose, on Flickr"><img src="http://farm4.staticflickr.com/3827/1163 ... 28e804.jpg" width="375" height="500" alt="Untitled"></a>

http://farm4.staticflickr.com/3827/1163 ... 28e804.jpg

[DancingRT]

To answer some of your questions...
The machine I have is the ResMed S8 (should show on profile...have to fix that).
I have been tested for TB (and do every year for work). Doc even sent me for chest x-ray and CAT Scan....all were negative. I have had my thyroid tested numerous times...and seems to be ok. I even went to my OB/GYN to see if it was hormonal, even early menopause (I am 32 yrs old). Those tests came back fine. With KLS (Kleine-Levin Syndrome), sweating is somewhat common in episodes due to the hypothalamus being affected, but nowhere close to how gross I am.
As for medications...most are for allergies/asthma (Claratin-D, SIngulair, Advair, Nasonex). I take Cymbalta for the fibromyalgia. I was on all these way before I started with night sweats.
The other issue I should have mention is the doc is not 100% sure if I have mixed apneas and not all obstructive. Which would be why the CPAP does not work for those apneas I still have on the CPAP. It kind of sucks that I can't change the setting on my CPAP machine...only the doctor can through the chip in the machine....considering I am a respiratory therapist and can do this to patients (on the same machine....and even on life support, or on emergency CPAP) at work. The machine is locked where the ONLY changes i can make are the ramp and humidity. Two RT's I work with (and also do homecare with these machines) are going to show me how to unlock the machine so I can titrate it and see for myself. Being an RT does have its perks.
The titrate sleep study I had was also testing for seizures while I sleep. My boyfriend says I sometimes shake like I have seizures while I sleep...with and without the CPAP.

[Julie]

Yes the machine can be unlocked... such crap considering diabetics have been doing their own thing for decades with nothing like the nonsense we've had to face here! I'm concerned that your asthma meds might be affecting your sleep - keeping you from REM if not more because they're stimulants to an extent, not what you want with Cpap. Were you on Cpap when you had the shakes?

[kteague]

Hello and welcome. Yes, it's so very frustrating when the answers and solutions are so evasive. Just my guess, but you may have a process of elimination to pinpoint all that's going on. Obstructive sleep apnea may be just one of your problems. But at least it's a known factor with ways to troubleshoot, so a very good jumping off point. I would be curious if a detailed look at your nightly data could give the data gurus on here some clues. If your pressure is ineffective, treatment compromised by leaks, or you have more than the garden variety OSA, they might be able to tell. I'd especially want to know if you could have complex or central apneas, which could make the current treatment problematic. Once you have optimized your treatment experience, you can see if any symptoms remain to be dealt with.

Has your boyfriend said if your feet or legs in particular move much in your sleep? It would not be unheard of someone with a limb movements of sleep problem to have more symptoms when their OSA is treated than not. Events from sleep apnea can cause sleep to be too fractured for the limb movements of sleep to get a chance to manifest much. Resolve the apneas and sleep more and then the movements can show themselves. If you do not seem to have this problem, I wouldn't spend any time chasing down that rabbit trail. Just keep it in mind if he does report such movements.

Please do let us know how things progress.

[zoocrewphoto]

Is your machine really an S8? I got my first machine a year and a half ago, and it is an S9, and that had been out for over a year before that.

You have to have a special card reader to get data from an S8, but not from an S9. If you actually have an S9, you can get data and see more of what is going on.

[DancingRT]

I don't see the sleep doc again until February.
We are trying to rule out the mixed (complex) apneas. Every symptom I have (shaking, apneas, sweating) I have with AND without CPAP. My boyfriend has made it clear I do NOT snore at all when I sleep, and on the sleep study, some of those apneas could NOT be controlled with the CPAP. My boyfriend says I do stop breathing on the machine...he can tell cause you can hear the machine give me breaths, and then, nothing for 20 seconds, and this will happen periodically throughout the night. There is definitly some OSA...but not too sure what is causing the obstruction. I don't snore or make any gasping noises, I don't have my tonsils, sleeping on my side/back/stomach doesn't make a difference.
I just REALLY want my life back....sooooo sick of feeling like crap all the time

[zoocrewphoto]

I don't see the sleep doc again until February.
We are trying to rule out the mixed (complex) apneas. Every symptom I have (shaking, apneas, sweating) I have with AND without CPAP. My boyfriend has made it clear I do NOT snore at all when I sleep, and on the sleep study, some of those apneas could NOT be controlled with the CPAP. My boyfriend says I do stop breathing on the machine...he can tell cause you can hear the machine give me breaths, and then, nothing for 20 seconds, and this will happen periodically throughout the night. There is definitly some OSA...but not too sure what is causing the obstruction. I don't snore or make any gasping noises, I don't have my tonsils, sleeping on my side/back/stomach doesn't make a difference.
I just REALLY want my life back....sooooo sick of feeling like crap all the time

Not all people with sleep apnea will snore. My mom doesn't snore. But she will stop breathing for more than a minute at a time.

What machine do you have - exact model?

Your profile shows the humidifier for the S9, but your intro says you have an old S8.

Which one do you have? If you have the S9, do you have the Escape, Elite, Escape, Auto, or Autoset? Or do you have one of the vpap or asv machines?

You really need to look at data, and we can help you access the data if your machine provides it.

[DoriC]

Are you on straight cpap or auto, sounds like you may need more pressure, are you using EPR, have you tried other masks, when are you taking your allergy meds? When my husband is having a bad night for whatever reason he also complains of being cold although is body feels warm, I'm not sure what the connection is? Keep us posted.

[DancingRT]

I have the S9 Elite (double checked). I would like to look at more data...and even bring it to work to show to the other RT's and docs...get a few opinions

[BlackSpinner]

I have the S9 Elite (double checked). I would like to look at more data...and even bring it to work to show to the other RT's and docs...get a few opinions

You can use the Sleepyhead software too see your data. You may need to get a card reader (around $10-20) See the thread in the top section for the tutorial.

[robysue]

DancingRT,

Welcome to our world. Try to remember these initial difficulties when you are helping future patients adjust to this crazy therapy. It's a shame that you're having such a rough adjustment period, but you've got lots of company with rough adjustments and a subjective feeling that the sleep is (much, much) worse with PAP than without it. It takes time to learn how to sleep with this alien on your face and it takes some of us a whole lot longer than what sleep docs and RTs tend to tell us to expect.

Have you looked at the data that your machine records? Or is SleepQuality set to Usage so no useful data is being recorded?

If SleepQuality is set to ON instead of Usage, your machine will record every breath you take all night long, it will flag the apneas and hypopneas, and it will make an intelligent guess about whether each apnea is more likely to be an OA or a CA. Looking at the data in ResScan (the official software) or SleepyHead will let you quickly determine just how many events are still getting through the CPAP defenses, when those events are happening, and what type of events are occuring. That data will either support your current theory that you may have mixed sleep apnea. Or it could show that your AHI is actually under control and the problem is something else.

As kteague points out some people with both OSA and PLMD problems have the PLMD masked by the OSA arousals and the PLMD doesn't become evident until after the OSA is properly treated with CPAP. So it's worth having that looked into.

You say you're not scheduled for a followup until February. But you're having some serious problems NOW and you're worried that the CPAP is not fully addressing the apneas, It is worth calling the sleep doc's office and reporting the problems you are running into. You might get a call back from the doc or a nurse. Or you might get that follow-up pushed forward. There's no reason to suffer in silence. Let the prescribing doc know you're finding it very, very tough to be compliant because among other things you're now thrashing around in bed and getting tangled in the hose every night.
.