Hopeful update!

[MorningGirl]

Hi, all!

Just wanted to post an update, as my last thread was pretty desperate. I went up to Beth-Israel in Boston to see a sleep specialist there, and he knew right away that whatever I was told by my doctor here was incorrect and, in fact, was clearly not appropriate for my case. The CPAP at the pressure I was prescribed is way too high, and we have to find the real source of the problem before using such a device. So...he's referring me to someone he knows here near where I live who is top-notch (trained at Beth-Israel) and will do another sleep study on me that is multi-pronged and much more thorough. Might end up with the CPAP at a much lower pressure, or maybe investigate Inspire...we'll see.

So -- I'm off the CPAP for now and much more relaxed than I have been since starting it and being made aware of my nightly AHI (it just made me super-anxious!). My new sleep study isn't until May (at the earliest), though I'm pushing to have the Boston doc call down here and throw his weight around a bit. We'll see. In the meantime, thank you all for your responses and advice over the last month or so. Having a community of people who are in the same boat is so crucial!! Many thanks.

[Sleeprider]

I'm glad to hear you are finally getting the help you need and a better evaluation. Your last posted results were beyond amazing with high pressures and persistent obstructive apnea. Did you ever try the lower pressure suggested in that thread? http://www.apneaboard.com/forums/Thread-...#pid247831

Anyway, you have a unique problem, and you needed the professional help. Your last sleep doctor should have made the referral when he clearly failed to control your problem.

[kiwii]

...My new sleep study isn't until May (at the earliest), though I'm pushing to have the Boston doc call down here and throw his weight around a bit. We'll see.

You may be able to call into the sleep center periodically and see if they've had any cancellations. Or maybe they can put your name down to be notified or something.

Best wishes!

[mesenteria]

MG, I am happy to see that you are being treated with respect and with some urgency from kind and well-meaning people.  This sounds encouraging.

One thing you might wish to 'work on' while you await more positive experiences is to convince yourself that what you have endured was simply inappropriate, and therefore not likely to be realistic or even related in any way to what you will experience with new machines, administrators, monitors, and a new and more definitive diagnosis.  Convince yourself that it will be much better next time, and look forward with anticipation to a true and proper prescription.  Be optimistic.  This process has worked, and continues to work, for many thousands, and it will work for you. 

[MorningGirl]

I'm glad to hear you are finally getting the help you need and a better evaluation.  Your last posted results were beyond amazing with high pressures and persistent obstructive apnea.  Did you ever try the lower pressure suggested in that thread? http://www.apneaboard.com/forums/Thread-...#pid247831

Anyway, you have a unique problem, and you needed the professional help.  Your last sleep doctor should have made the referral when he clearly failed to control your problem.

Hi -

I didn't try the lower pressure -- couldn't figure out how to do it myself (the doctor had programmed it in...). However, it does sound like it might work for me. Now, I'll just wait for the second sleep study and see what the more expert sleep doc here has to say. 

 You've all been great!

[Sleeprider]

MG, I think it may be a good thing to try at least once. Here are instructions on making the changes: https://www.apneaboard.com/resmed-airsen...setup-info At least trying the lower pressure will give you an answer that may be useful later.

[Mogy]

Good luck MorningGirl, it sounds like you are on the right track now. We are all rooting for you. Thanks for the update. 

[trish6hundred]

Hi MorningGirl,
Goodd luck to you as you find out what your treatment under the new doc will be.
Keep us posted on how things go for you.

[MorningGirl]

Thank you, Mesenteria! I will definitely work on the emotional/mental aspects of all of this, including my experience with the initial diagnosis and CPAP use, etc. Since I'm living alone again for a short while (my daughter is not living with me right now), it's hard to know if I'm stopping breathing a lot at night or not, but I suppose it doesn't much matter. This has been happening for years now, and I haven't expired yet. (No plan to. )

-MG