Frustrated with treatment

Hey all, new to the board.

I'm frustrated. I've been waking up at night with a racing, pounding heart. I haven't done this since I started CPAP about seven months ago.

The disheartening thing about all this is my doctors. I've been complaining to them that I haven't been sleeping as well as when I started. My original sleep doctor no longer is in my town, so my physician referred me to a new sleep doctor, who literally told me my symptoms are due to psychological issues.

Really? I couldn't believe what I was hearing.

I can list exactly what symptoms I complained about before that got my sleep study one the fingers of one hand; on all toes, fingers, hairs on my head I can list the individual things that improved once going on treatment, things I didn't even know could be improved. Those benefits are going away. It doesn't seem to be any more complicated than that to me.

I've spent the last twelve years getting treatment for anxiety, panic, and depression. None of that work really made any difference in comparison to how much better I felt after getting on CPAP.

How hard could this be? I almost feel like I have to color what I say to my doctors about my symptoms, and that feels awful. I want to scream: THE PSYCH DIAGNOSES ARE A CRAP CATCH ALL AND YOU GUYS KNOW IT.

At any rate I made an appointment with the doctor who did the original study. It's on Friday, but man I'd love to make it through a solid night of sleep again soon.

Have you been running Encore regularly? What do your numbers say? I would think you could at least get either some reassurance from them, or at worst data that would back up your feeling that something's not right. What is/are your pressure setting(s)? It does happen quite often that people first experience a terrific feeling of 'recovery' for some time after starting treatment, then start to feel not so terrific afterward. Whether that's a matter of needing to tweak their mask some, or possibly changing their settings a bit, maybe having gained even a few lbs. (you'd be amazed at how much difference that can make!) or just having adjusted to a "new" reality once the 'honeymoon' wears off, of living with OSA and the sometimes imperfect realities of Cpap doesn't really matter, but all must be looked into for answers.

Have you been using the same mask this whole time? Sounds like you've begun leaking. You might need a new mask, or a new seal. Or you might need to look at possible mouth breathing issues.

My mask requires a new seal about every 4 months. Everyone's mileage varies. I would strongly encourage you to try a new mask at this point.

Cheers,
Barbara

Hey Julie, thanks for the response. I'm working through what's going through my head with all this, my message is probably wandering, but I'm working through what's going through my head and trying to make this appointment I have tomorrow more effective so I'm writing it all down.

Yeah I was waiting for the time when the treatment didn't seem to do as much as it did when I started, just getting used to it. Things were going really well, and still improving in the first three months or so. I wasn't getting perfect sleep by any means but the improvement was very welcome, I got to where I really looked forward to sleep every day.

Towards the end of that three months, I noticed that I had gone a couple weeks and hadn't looked forward to sleep. I noticed mainly my day to day anxiety was raising, well, anxiety, I call it angst. When I felt better I noticed a big improvement in anxiety and depression (almost like I loved to be still and listen to the sound of air around me), but the bigger thing was a lack of angst, or being mentally disturbed for little to no reason. I noticed at the end of about three months when I wasn't looking forward to sleep anymore that then angst was returning.

I brushed it off mainly, thinking it was all due to stress at school. About a month later, I had been under a lot of stress, I started to cry on the way to class one day, randomly. I'm a guy, I almost never cry. It was kinda surreal. So I went back to my doctor and let them know I thought something wasn't quite right. They prescribed a sleep aid, and I took that, but I hated it - things didn't improve with it, just made me permanently dull (and now comically depressed in a way I hadn't experienced before). She then referred me to the new sleep doctor, and he was backed up for about six weeks so I waited.

The end of the fall semester was almost completely shot. I ended up with an incomplete in one class. I noticed one day looking back over my notes that I couldn't remember the class periods that I had taken the notes for, and I thought no wonder I was having difficulty studying, I couldn't remember what was said in class - there was a cutoff point where I could vividly remember the lectures. I couldn't concentrate, reading much more than a paragraph at a time was a chore, and my reading comprehension wasn't great. I was having real problems writing essays and answering essay questions on tests. I felt mentally dull, almost all the time.

I finally made it in to the new sleep doctor some time ago. The guy was rude and aggressive, "you don't know how you're feeling". He immediately sat aside my thought that I was having decreased sleep quality and put me on a two month course of taking sleep aids and doing a program for insomnia.

I taught classes to college students for two years on how to handle effectively insomnia and what the doctor was saying to me didn't make much sense, i felt we were covering up the trouble with a sleep aid. Outside of the sleep aid I couldn't see anything different in the literature he gave me over what I was already doing. I called the doctor back the next day; he offered no logic and told me if I didn't absolutely follow his directions he no longer wanted to be my doctor. I was really disappointed in this.

I called my physician and she made a new referral. The next two weeks I started having what I thought were daytime panic attacks. I was dizzy, faint and nauseated, and felt unable to stand. After awhile I realized I was having those symptoms without the anxiety - my palms weren't sweaty and I wasn't dreading them, they were just happening. Finally I went into urgent care to talk to a doctor. The caught heart arrythmias on the heart monitor, and saw extended PVCs. The doctor said I was fine, go home, don't worry about it, you're young and healthy, but we're going to have you follow up with a cardiologist for monitoring anyway.

I had the trouble for another day, and it went away. I saw the cardiologist, he put a Holter monitor on me and everything was normal. I was fine for awhile. A few nights ago I started waking up with the rapid, pounding heartbeat. I wake up feeling fine, but can't figure out exactly why I'm awake. Then I notice my heart pounding rapidly, and I notice that on exhale my CPAP is adjusting the airflow to my heartbeat. My doctor started noticing when I went in first complaining about sleep after starting CPAP that my blood pressure had been rising over what it had been (right after cpap I was getting 115/70; that first day back in I was 170/80).

My AHI has been creeping up, but it's not that bad, sitting around 3.5. I've been snoring according to the reports. I'm set at 10.

Before getting on CPAP I would have never have complained about any of this, it was all normal and par for the course, because of the panic diagnosis. My PSG had an AHI of 27 and an average RDI of 135 (most of the AHI was in hypopnea and not full apnea). The original sleep doctor described this as severe.

Babette -

No actually I've had several masks. The one that I think I sleep best on is the original set of Respironics Optilife nasal pillows I started with. The reports at least show a consistent leak rate with it. The second best on is a F&P full fask mask. I tried several full face masks thinking I was opening my mouth at night (dry mouth). The F&P has one of the more consistent leak rates on the reports, but I either snore heavily or have high AHI lately with it - last time I used it about a week ago I got an AHI of 10, and the day before I had a Vibratory Snore Index of around 150.

Okay, you've stymied me. You've got something going there, and need to find a doc who will figure it out. Wish I had an easy solution!!!!!

Best of luck!
Barbara

Two ideas.........

First, you have to take charge of your own therapy. You have to learn more about sleep disordered breathing than your doctors know.

Second, you need to make sure that your O2 saturation stays at 93% or more....all night....every night. You are fighting suffocation....the suffocation is causing panic chemicals to flood your body....and those panic chemicals are putting your BP out of control. The only way you can know what your O2 saturation levels are...is to get a recording Oximeter....and use it for a few weeks.

Guest wrote:My AHI has been creeping up, but it's not that bad, sitting around 3.5. I've been snoring according to the reports. I'm set at 10.

I'm no doc or RT, but when you tell me you're still snoring at 10 (sometimes with a vibratory snore index of 150!!!)...it makes me think you need more pressure. I'd start inching my pressure up until the snores got under control, and then I think you'll find that your AHI strts coming down <2 and you start feeling much better.

Your profile says you have an Auto, if so...switch it into APAP mode at 10-13 and see what happens. I'll bet you spend most of the night up around 12 or 13! If you don't have an Auto, try bumping the pressure up to 11 for a few nights and see if your snores go away and you start feeling better.

Now of course the problem you may encounter as your pressure goes up, is that mask leaks may become more of an issue. But fine-tuning the treatment is always a balancing act.

Dear Chance Guest

I have been in the position that you are in. The holtor monitor didn't catch mine either.
Finally after many trips to the Dr. when the heart was acting up, we caught it.
The meds took care of the arrthymia , Panic attacks and anxiety.
Getting better sleep took care of the sleep deprivation symptoms.
Later we are back to the rapid heart waking me at night and the sleep deprivation
symptoms during the day. Back to the Dr. Only another sign has arisen I can feel
my throat close just before I go to sleep. Sleep study time. Yes I am now on CPAP.
Now here is the clincher for me. During my brain dead time I messed up on the heart meds.
Which in turn messed up the CPAP therapy.
Now that I have both of them right I feel better than ever.
So maybe tracking down the one time document of arrthymia and getting the proper meds
could very well improve your quality of life
Moombeam

Allergy season? A rise in nasal congestion?
Have you made sure to change the filter / filters on your machine?

O.

ozij, such wisdom so early on..

It has boiled down I think mainly to nasal congestion, maybe not all allergic, not 100% sure yet.

I saw an allergist - the results were slightly inconclusive because I didn't respond to the test controls correctly, but in the end: sensitive to dust mites, ragweed, cedar mostly. I saw an ENT - I'm structurally OK, no nasal polyps or septum deviation to worry about.

I discovered that my original CPAP machine was a huge trigger for congestion. Once I got ahold of a new machine, the old machine seemed to coat my nose and throat and I reacted violently pretty quickly in comparison. I'm debating whether to break that machine down and make photos to post online. I know my place then was the poster child for what not to do for dust mite allergy - if there's any chance that machine actually builds up stuff from the environment, it'd be interesting to know. The new machine helped but didn't fully fix the issue in the end.

The bad parts of these last few months: the usual doctor-recommended drugs for nasal congestion don't seem to work. Nasal steroids (tried Flonase, QVAR, Nasacort) all work initially, but I get more congestion about a week into, and I get a real anxiety and dizzy response to them. Antihistamines work for a day or two, and then they cause more congestion. Astepro seems most promising, but it causes my nose to block up completely at the front, where it squirts in.

Sudafed works, but it speeds me way up, hard to sleep on it. Afrin works great, but I'm hesitant due to the rebound it causes (used maybe a dozen times these few months).

It's taken awhile to try each of these things and the combinations. Really, half of the battle has been my anxiety about all of this, and anxiety caused from poor sleep. I felt so much better when CPAP was working, I could see nothing but blue skies it seems in retrospect. I implicitly promised myself that if the anxiety and depression I had learned to live with in my adult life returned, I knew where to look first. I felt good enough after the start of treatment I abandoned a lot of the tools I used to deal with anxiety - there was none to handle, and life seemed to be calling, I looked forward to everything.

It also put this thought of "holy *&^% this went undiagnosed for YEARS" in my mind - a bit of mistrust for doctors - were they not listening all this time? That mistrust along with the anxiety has made communicating with my doctors and everyone very hard.

Anyway, this post is a way of rectifying that.

What's going on now: Trying Nasalcrom. I started it a week ago and it seems to have been doing nothing but good. Very slowly the congestion is getting better. I'm vacuuming my carpet every day and doing the rest of the dust mite avoidance cleaning (one attempt at moving to a place with hardwood botched..argh). Doing nasal irrigation as needed, about once a day. :crosses fingers:

That last "guest" post was me. Oops.

Are you aware that your machine has two kinds of filter - a standard one for lager particles, and a disposable, white one for fine particles?

I'm not terribly allergic, but I've discovered that proper filter maintainance (wash the washabe, use and discard the disposable) does make a difference.

O.

Yeah. I'm using a Resmed machine, replace the hypoallergenic filter every other week. Yesterday I bought those filters from a few different sites.. I notice the pictures aren't the same from site to site, and what I have here doesn't seem to match any of them, so something I'll play with once they arrive.

Side note: last night I think things went pretty well - possibly better than I've had in months. My skin color is back, the rings under my eyes are very small, my trip to the gym was easy. I used a chinstrap again, after stopping on the suggestion of a doctor a few months ago.

Hi again, glad things are a bit better. I wonder if you've tried turning down your humidifier - it's often responsible for congestion problems when it's set too high. Another thing I didn't see here was a suggestion that you might have gone the way a lot of us do once we're getting air pumped in all night, and that is that we become mouth breathers when sleeping (unaware of it) and need to consider full face masks, after a trial of taping for a couple of nights. It's an easy thing to check out and an easy thing to fix if you find you feel better after the taping.