It just gets worse - part 2

[cherylann]

I jsut made this post under the name "dannysgirl". It's been so long since I've been here that I forgot my name - ha ha. DG is my nickname. Soon as I posted it I realized something was wrong, but the administrator straightened it out for me.


Hi, guys. I haven't been around for a while because I've just been so discouraged. I'ts been a year now and nothing is working for me. I have tried a CPAP, a BIPAP, numerous different masks, I have had two sleep studies, have had the pressure changed several times, seen countless doctors, bought a matress genie, and lost 30 pounds (though I'm still about a hundred pounds overweight). I don't know which is worse - trying to sleep with the mask which I can only tolerate for a couple of hours or without it. Either way, I don't get any sleep. I do good to get through the workday and get home and collapse. Whether I lie down on the sofa or sit in the recliner, I am gasping for breath and lightheaded within 30 minutes of dozing off. It takes me two hours in the morning to become functional.


I just don't know what to do anymore.

[2 B Sleeping Soundly]

*I reposted this from the other thread that did not have the members correct Forum name*

cherylann

I am very sorry to hear about your struggles. I can only imagine how difficult it has been for you! I wish I could think of something for you to try, but you have done everything I could think of. Hopefully, some of the wise veterans will have something to add to what you have already tried. I know it would be helpful if you posted your equipment and some of your data, if your machine records therapy information and not just compliance.

I am so glad you are still trying to make this work and have not given up. There is always a chance that things could turn around as long as you keep on fighting. You and your health are worth any effort you can still put forth. Keep on trying to maintain through these tough times and eventually you may get paid off with your problems with your therapy being figured out! It can still happen

I will remember to keep you in my thoughts and prayers.

John

[cherylann]

You know the strange thing is, when I am not at home I do just fine. I was in the hospital most of January - did not have the machine and slept just fine. And there have been a few overnight trips (I never take the machine with me) where I slept fine. And last week, a family member was in an accident - I stayed at the hospital all night and didn't get to bed until 6 a.m. My sister had to shake me awake at 10:00 because I was sleeping so good.

[jweeks]

Hi,

Exactly what diagnosis did you get (OSA, RERA, leg movements, etc), and how bad is it (untreated AHI and O2 levels)? Any idea why you cannot seem to tolerate CPAP? That groggy feeling that you have for two hours in the morning might be a hangover from lack of oxygen. If so, that is a pretty nasty things to have long-term. If you cannot find a solution to being able to use your machine, then maybe there is a work-around to buy you some more time. One example might be using a sleep aid. My brother uses triazolam. It is fast acting, but very effective, though it does have side effects. At least this would get you to sleep. After you are sleeping, the CPAP might not bother you. Another possibility might be using oxygen. This would cure the breathing issue, but it might keep you from having oxygen desaturations, which might reduce the long-term damage called by OSA. A third possibility is a dental device. Some dentists have gotten good results in some cases by moving the lower jaw slightly forward or by using a retainer on your tongue. Finally, consider visiting an ENT (ear nose throat doctor) to see if there are any structural issues that can be repaired.

I am not suggesting these work-arounds as the best long-term solution. Rather, it might buy you enough time to solve the CPAP issues, or to possibly lose that 100 extra pounds that you mentioned (which might also help the breathing issue). I know that losing the weight isn't easy, but I do know that it is possible.

-john-

[cherylann]

hi, john.

The diagnosis was OSA. I don't recall what the numbers are just off hand - I'll have to dig out the reports. I know I started out with a CPAP with a pressure of 15 then switched to a BIPAP with a pressure of 15/8 which they decreased to 13/8 and then 10/8. After the second study a few weeks ago, I went back to a CPAP with a pressure of 7. I haven't downloaded any reports in a while because on the nights i try to wear the mask, I only manage a couple of hours.

I am having problems with oxygen and have had it bled through the mask for several months. It was dropping into the 60s at first. now when I check it, it is frequently in the low 80s (that is without the oxygen). I think my problem is mainly the mask. It suffocates me. I mean, my face is covered in hard plastic. Every time I turn over, it shifts and I have to readjust it. If my nose itches, I have to take it off and put it back on. I'm always aware of it and always fighting it and always feel like I am suffocating.

I tried a sleeping pill - very lowest dose possible - and I slept OK, but was groggy for most of the next day. Allergy medicine affects me the same way.

I have seen two ENTs and the only things they saw was a narrow nasal passage which accounts for me being a mouth breather and acid reflux, but i am taking medication for that now.

My doctor is also treating me for asthama with a twice a day inhaler. I had asthma as a child, but am not having attacks now, but he seems to think that's a possibility and is complicating the problem, but it hasn't gotten any better since being on that.

The dental device is something thatI have heard about - I think I will talk to my dentist about it

[Julie]

Hi - a pressure of 7 after everything else you were on seems a tad low, but that's for you and your doctor to work out.

Have you been checked over lately for things like thyroid problems, had bloodwork done, a cardiac or fasting glucose work-up? There could certainly be other problems affecting your health besides OSA.

I also wonder about your trying different sizes of FF masks because the one your using sounds too uncomfortable to be much good.

[Sir NoddinOff]

I didn't see anywhere in your post about trying nasal pillows. I hated my face masks, all three of them, then bought ResMeds Swift FX nasal pillows with headgear. It was love at first sleep. You mention being overweight, maybe the masks are just not designed for your face, whereas nasal pillows may be less interfering with your sleep positions. If you tried them a long time ago and didn't like them, you may be surprised at how light and secure the newer designs rest on your face.

With my old masks, one of my nasal passages would always clog up... they never do with the Swift FX. You may or may not need a chin strap for mouth breathing but that's not a big deal to deploy. Mouth taping also works for some. Good luck with your problems, we are all rooting for you!!!

[BlackSpinner]

I am having problems with oxygen and have had it bled through the mask for several months. It was dropping into the 60s at first. now when I check it, it is frequently in the low 80s (that is without the oxygen). I think my problem is mainly the mask. It suffocates me. I mean, my face is covered in hard plastic. Every time I turn over, it shifts and I have to readjust it. If my nose itches, I have to take it off and put it back on. I'm always aware of it and always fighting it and always feel like I am suffocating.

Then you need a therapist. The suffocating feeling is purely psychological. You need to deal with the hidden mental attitude. Nothing else will help.
You basically need to reprogram your mind to accept this.

Read this thread: viewtopic.php?f=1&t=78045&p=710513#p710513

[Gerryk]

You stated that at home you feel you are suffocating yet when you were in the hospital you were fine.

Have you been tested for allergies? If you are ok in one place but not another it is highly likely you are allergic to something in your home.

If you never had a problem with allergies in the past, that doesn't mean you aren't having problems now.

[BlackSpinner]

You stated that at home you feel you are suffocating yet when you were in the hospital you were fine.

Have you been tested for allergies? If you are ok in one place but not another it is highly likely you are allergic to something in your home.

If you never had a problem with allergies in the past, that doesn't mean you aren't having problems now.

But she was sleeping without cpap

I was in the hospital most of January - did not have the machine and slept just fine. And there have been a few overnight trips (I never take the machine with me) where I slept fine.

And what does "fine" mean? I slept "fine" without it too as far as I was concerned. I just didn't know about the 56% O2 and the constant not breathing.

[jen4700]

Hi there. What was your longest time wearing the mask at night - even if it was only for 3-4 hours. Two days in a row - ten days in a row - any days in a row? CPAP is a treatment that takes time. I thought it would be a quick fix and it's not. But the only way to get successful treatment is to use it. I agree with all the things said so far.

- try a different mask (i like mine and couldn't stand a FFM)
- maybe talk to someone about how you feel, attitude really plays a huge part
- have you tried putting the mask on and watching tv?
- check out the other medical issues the BS suggested

There are a lot of ways to help. It takes patience (I'm learning the hard way!!!). Good luck!