My sleep has not improved despite CPAP

[tomcatsf]

I was diaganosed with sleep apnea in May and have dutifully followed CPAP therapy since then. I eventually adjusted to wearing the mask but unfortunately my sleep is not improving, it is in fact much worse. There are secondary problems with the mask. I get a lot of swelling under my eyes that seems to be worse when I take sleep medication. No one has recommended a solution for this. I went for a second sleep test the first week of October where I had the worst night of sleep in months, in fact in playing with the pressues they might have injured me because I walked out with the worse sore throat of my life and have had upper respiratory problems every since that night. Their conclusion was I wasn't sleeping well but that my pressure didn't need adjusting.

I have had many many discussions with my various doctors on this and I am in despair. No one seems to be giving me good advice and there is absolutely no follow up with me on how badly I am responding to the therapy. It feels like no one knows what to do with me and I am being pitched from one doctor to another. The sleep medicine doctors, I believe, feel I have have an anxiety problem and that they have done all they can for me and have now shipped me off to psychiatry who I feel is convinced that my insomnia is a physical problem and I don't demonstrate enough anxiety for treatment from them. My insomnia has totally screwed up my life, I am unable to work full time and I am constantly feeling slightly sick and disoriented all the time. I am prone to getting viruses and whatever is going around very easily because of my constant fatigue. My greatest worry is that I will become so tired that I will not be able to battle through to a resolution of this problem or that I will make some clumsy mistake someday that might endanger my life.

How do I get my doctors to work together as a team to get me the help I need, because I have lost confidence in all of them? I just know there is a solution for this out there.

[Stormynights]

Post some data to get help. We know nothing about you. I now believe there are some good doctors out there but no one can recommend one without knowing where you are. We also need to know about your equipment and reports.

[Julie]

Go to the User Ctl Panel under the Cpap logo. Click on it and go to Profile. Fill in the full name and model #'s of your machine, mask and what pressures you're set at. That will allow the info to automatically appear under all your posts (incl'g the first) so we can see what you're using. We'd love to help but need something to go on. What meds are you taking? Have you been told you sleep with your mouth open at all?

[tomcatsf]

I made my first posting before registering, sorry. In answer to a couple of questions posted to my posting, I believe I have filled in the equipment and face mask information now. The software I don't have a clue. Its a Phillips machine, supplied by Apria in California. I take xanax primarily for sleep because it works quickly and leaves my body quickly. Last week I tried something called mirtazapine which a psychiatrist counseling me prescribed but it leaves me with a terrific hangover and lots of puffiness around the eyes. I won't continue with it. I had a similar reaction to zolpedem. I know this is not the typical reaction to a very common drug but it was my reaction. I work as a massage therapist and have to be very alert in my work. Any sedation I might take really interfers with my being able to detact pain and stress in my clients' bodies. I have the same problem with pain medication. I have to use it very sparingly or it will interfer immediately with my work.

By the way, my sleep doctor never asks to see the data on my machine and my respiratory therapist has looked at it only once which I find very odd. I keep asking them about this data but they don't seem much interested in it. They seem only interested in the information recorded during the overnight sleep tests. As you can see there seems to a quite a lot of missing communication here which I don't know how to change. I am more than cooperative with them, but they never follow up with me.

[Pugsy]

Nothing but your mask is showing up in your profile.
Some of the equipment menu choices have broken links and aren't showing up.

What model PR S1 machine do you have? Model number is a 3 digit number on the bottom of the blower unit..probably preceded by DS or REF.
Once we figure out exactly which model machine you have then you can just manually add it in your comments section if we find out that the link to your machine is indeed broken.

[tomcatsf]

Well I'm not sure why my machine information isn't showing. It is a Remstar Auto, DOM with a ref number 560P.. I don't find that exact match in the machine selection drop down so I chose the first one. Hope that helps. My machine is still set on the lowest setting even after the results of my second sleep test.

[zoocrewphoto]

Can you tell us the numbers of your settings?

Lower pressure is uncomfortable for some people. And may not be enough to actually give therapeutic treatment.

Is your machine in auto mode? Is there a range of pressures?

[tomcatsf]

I added the equipment information into the additional information line as suggested. Hope you can read it?

[tomcatsf]

When I had the very uncomfortable last sleep test they pushed the pressure to 4 and I found it intolerable. I believe the machine adjusts automatically when I stop breathing and returns to normal when I start breathing again. Again a lot of this information isn't being communicated to me and I am new to this and don't know what questions to ask.

[caffeinatedcfo]

Most people feel suffocated by a pressure of 4. What pressure did they prescribe you?

[tomcatsf]

It is, I believe the lowest pressure possible. So probably something around two.

[kaiasgram]

I added the equipment information into the additional information line as suggested. Hope you can read it?

Hi neighbor (just up the street in Davis ) You mentioned being at the lowest pressure -- so is your current machine set to a single pressure of 4 currently, or is it set to a range of pressures? (Edit: I believe 4 is the lowest pressure possible so you can't be at 2)

If you haven't yet learned how to access the clinical menu on your machine to see your pressure settings, this video tutorial should help (bottom of the page):

http://www.cpaplibrary.com/machines.html

Let us know what's what with your pressure setting(s). Then we'll start looking at what's going on with your apnea at your current settings. Do you use a Mac or a PC?

[Julie]

You need to get the low pressure setting higher so you can breathe properly, e.g. to at least 6-7, and the upper one (probably left wide open at 20) can be left as is for now. If you need info on how to do it either go (low on the page) to apneaboard.com and find the manual that fits your machine, or else ask here and someone will explain it - not hard at all. Plus you need a knowledgable MD to go over your meds with you re what's compatible with Cpap/OSA, etc. and what's counterproductive, either neurologist who specializes in sleep meds, or a GP who does. There is no '2' setting- 4 is the default lowest possible with most machines.

[SleepyToo2]

It sounds like you have so many challenges with sleep that it might be necessary to find a doctor who can really help you. Insomnia is not an easy thing to treat if you have sleep apnea. Your pressure sounds too low to be of any help, and may be making you feel worse. Many people find anything less than 6-8 is suffocating. Alternatively, your mask is not adjusted correctly and it is leaks that are causing puffiness around the eyes?

I would recommend that you spend some time reading on this web site and find out what your pressure really is. Then people can start helping you.

[tomcatsf]

I'm getting conflicting information on the pressure setting in this forum which is confusing me. One person says 4 is intolerably high another says I need to go much higher than that. They experimented with all of that in my second sleep test. The machine was set at the prescribed setting when it arrived. I would not and cannot tamper with it. I would imagine they would have changed my prescription after the second sleep test if a higher setting would have given me more benefit. Please read all my postings especially my reaction to the second sleep test above. Again they have not decided to change my pressure setting even after the second sleep test. I am reasonably intelligent but a lot of this information is just not being communicated to me by my sleep team.