help me im losing hope

I finally went to see my doctor and she said that she didnt know what else to do for me. I have been on Cpap for 6 months with no relief. After she tild me that I did not use the cpap that night and I woke up acutally feeling better than when I had used it. Of course the feeling was short lived but i still thought that was interesting. I would like to know what you all think.... besides the fact that I probly need to get a new doctor.

Don't give up!!!

It looks like you can't check your results with software for this machine.... bummer!

So I looked back at your posts and see you were titrated to a pressure of 10cm. Now it's been 6 months... Can you call the doc who prescribed this machine for you and ask him/her to write a prescription for the 420E (to replace the 420G)? It's an auto machine and you can get software for it so you could see what's happening every night. I just looked up the price on cpap.com and for the 420E, the heated humidifier, the software, hose and manuals it is $799.00. (Maybe you already have the heated humidifier, in which case it would be less.) If you have insurance, you can still buy it online. Check out billmyinsurance.com

It's so hard to know why you're having no improvement without data to look at. I'm not sure what else to suggest other than to keep at it until you can get an auto machine.

What were your original symptoms? How severe is your sleep apnea? How low does your oxygen level go without CPAP?

Have you had a followup sleep study? How can she say there is nothing else to do for you if she doesn't have any data to go on?

Apparently (I was just told by my RT) you can have a doctor write a prescription and your DME will give you a pulse oximeter for a night and you can find out if your oxygen levels are good...if for some reason you can't do a full sleep study right now.

And yes, find a new doctor.

Jan in Colo.

The above advise is excellent. BUT DON'T GIVE UP! There are so many variables and only a louzy doctgor would give up on you. There are also other conditions that can be hurting your health. I suggest you go to another doctor and get a second opinion.
Please, we need you.

Oh, most definitely DO NOT QUIT!!!

I got really frustrated after a while because I was not feeling results in a time frame I thought was reasonable. I spoke to my sleep doctor after 30 days and he had two suggestions for me to try. When I see him again next month he will give me more options (that is, if I am still not feeling results). Get another doctor if you have to. YES!

I may not yet feel any significant results after 3.5 months, but I do know my oxygen saturation is a lot better than it was without treatment. I figure I am just a hard case and it will take more time. For some, it takes a least a year to get all the kinks out and on the right treatment. Please keep reading this board and asking for help. You did the right thing by asking for help

FF

All of the above!!!!

Monitoring your nightly data - breathing disruptions and oxygen desats is an absolute must. And no treatment decision (especially not the decision to give up) should be taken without that data.

Do anything you can to get a machine with software, and an oximeter, find a doctor that uses that info, and especially, come back here with the data and questions.


Don't give up!

We're here for you.
O.

thankyou all so much for your encouragement.

When my sleep study results came back I was suprised that my apnea was not as bad as I thought it was. My oxygen desaturation only went as law as 78% and there were only 129 apnea/hypopneas seen in 340 minutes. They started my pressure at 4 cm and that stoped the apnea but they titrated it up to 10 because I was still snoring.

My original syptoms were extreme fatige for years and headaches that were really bad when I woke up and then lessened but never went away.

I unfortunately dont have insurance and have trouble getting anyone to see me without it. But we are saving for a new machine.

Thankyou all Rebecca

So you've had your sleep study and your doctor is not helping? Is this doc your sleep doc or you're main physician?

Not having insurance I SOOOOOOOO know how you feel. I would check into the credible hospitals in the area to see if they can help you financially. I don't know your finances or if you're "low income" (such a bad term, but I am!), but its something worth looking into.

I know I have no insurance and was very depressed and no motivation for even completing college (23 and still not done). I went to several hospitals calling around and finally found one that had a Low Income Assistance program. (It also helps the area I'm in is quite low income.)

Don't take NO for an answer and eventually you'll find something. The whole process is quite frustrating, but you'll get there with the people on this board.

I myself am trying to come up with the finances to get a dental device to use in place of my CPAP. I never could get adjusted, so I did my own research and stumbled onto those.

It does take some people quite a long time to feel any effects from CPAP because the years and years of horrible sleep. Some people feel better quickly, some take time, and some never... If you want some info on other alternatives check out http://www.talkaboutsleep.com and go to the dental message board. If you wanna stick with the CPAP, then by all means find as much help and info here as you can.

You'll get through this, just like all of us do. It just takes ALOT of time, effort, money, patience, life-changes, etc. BUT A BETTER LIFE IS SO MUCH WORTH IT. (and not dying always helps too!)

Dear Rebecca,

First of all, you have been given wonderful advice by everyone so far, the best being DON'T GIVE UP. But I have to say, what struck me odd was your description in your last post of "only" 78% oxygen desats and "only" 129 apnea/hypopnea events in 340 mins. If I'm doing the math right, that's an AHI of 23, which is not good at all. Sonds like your have a serious condition there which "only" does not go with. To start you off on 4 cms. seems ridiculously low. That is like no treatment at all. When you were titrated, they should have found the ideal number which would stop your snoring. That was one of the comments I just read today in my titration study. The RT claimed he was able to 100% eliminate all events and snoring with a 10 cm. pressure level. And even if they can't eliminate all of your events, the correct pressure should eliminate snoring, I believe.

Y E S, go to a doctor who knows how to address this condition. It doesn't surprise me you're not feeling better if you're not on the correct pressure, or are not getting the correct guidance. We all worry about you and want you to make sure you are doing what is best to treat your condition. Your oxygen desats alone are, to me, pretty serious. I am pasting one of deltadave's posts today about the criteria for going on therapy. See for yourself if I'm wrong to worry about your way of thinking that it's not that bad. And, PLEASE, get a new doctor, maybe a pulmonologist who knows about OSA. BEST OF LUCK!!!!

Deltadave writes:

The severity of sleep apnea can be categorized as mild, moderate, or severe on the basis of the apnea-hypopnea index. Mild sleep apnea is defined by an apnea-hypopnea index from 5 to 14, an oxygen saturation of at least 86%, and minimal daytime disability. Moderate sleep apnea is defined by an index from 15 to 30 or an oxygen saturation of 80% to 85% and significant work or social dysfunction due to drowsiness and loss of concentration. Severe sleep apnea is defined by an index greater than 30 or an oxygen saturation of 79% or less and incapacitation due to the sleep disorder.
Flemons WW. Sleep-related breathing disorders in adults: recommendations for syndrome definition and measurement techniques in clinical research. Sleep 1999;22(5):667-89.