frustration

[Cleveland George]

I am curious if my experience with my physician is normal or if I should be as frustrated as I am. I began seeing a step doctor 9 months ago. I did the whole sleep study and they prescribed me a nasal mask without a chin strap. Now over the past nine months I have been able to sleep for more than 45 minutes a grand total of zero times. I have literally been "treating" with this doctor for nine months and I have made zero progress. First, I used the nasal mask and couldn't fall asleep. Then I moved on to the nasal pillow mask. They swore I could use it but I never could. My mouth constantly feels like it is filling with air. I tried a chinstrap, tape, etc. I then decided to try the amara view mask. I finally was able to fall asleep but woke up within an hour gasping. I then had my deviated septum fixed and turbinates reduced. After I healed from surgery, I tried the masks again with all the same results.

This entire process has been met by my doctor with occasional visits where he seems dumbfounded by what is going on. He cannot tell me which mask to use. In fact, he has never even looked at my masks. A few times he has changed the pressure from a ramp up to a steady number. I beyond frustrated with this now. I tried more exercise... it didn't help. I gave up alcohol over 120 days ago, it didn't help. I changed my bedding and sleep positions.... it didn't help.

Am I being too harsh or is my doctor not really helping much here? I actually see two doctors at the Cleveland Clinic's sleep department but I am now stunned that it has been almost a year and I have made no progress. These two cannot even tell me which mask to use, why I am waking up, what pressure to use. I am trying my best and it was even me who sought out the surgeon for my deviated septum. I set up the surgery and told my doctor and he said, "Good idea. It may help." Do I need to go to a new doctor?

[LSAT]

Fitting a mask is really not part of the doctor's job...that's the responsibility of the DME (where you purchased the machine and mask).
Finding a good DME when you start CPAP therapy is as important as finding a good sleep doctor.

[Julie]

What is the full name & model of your machine (there may be a 'Ref' # on the bottom but empty any humidifier water before turning it over. What is the name of your mask(s)? What are your pressure settings or setting and what are the ramp settings (they're not the same as the prescribed pressure settings). What position do you sleep in normally or do you turn over a lot overnight? Are you taking any meds btw? And have you tried a full face mask vs nasal?

[Cardinalphan]

Cleveland George, can you tell me about the turbinate reduction. I need to have this done but I am very paranoid that I will not be able to breath at all as I use CPAP with nasal pillows. Did the turbinate reduction require nasal packing? If yes, were you able to use your CPAP?

[Cleveland George]

The surgery has helped me to breath a lot. My doctor used no packing. I couldn't use CPAP before it so it remains to be seen if it helps my apnea. Even if it doesn't help, it would still be worth it. It is amazing how much better I breath on a daily basis.

[Bill44133]

It will really help if you let us know which machine you are using.. The mask is NOT the doctors responsibility.. every one is different that would come from your DME.

If you have a data capable machine you should be able to download your data into the sleepyhead software and post it to allow others to look at the data to see what is going on.
I have used the Cleveland Clinic(Broadview Heights office) since 2013 and would like to think my therapy has been very successful. You really need to take charge of your therapy.
Your doctor can NOT sleep with you every night to see what is going on. You have found a very good website that will be able to guide you better than the doctors can.

Welcome to the forum. I wish you well..

[Cardinalphan]

The surgery has helped me to breath a lot. My doctor used no packing. I couldn't use CPAP before it so it remains to be seen if it helps my apnea. Even if it doesn't help, it would still be worth it. It is amazing how much better I breath on a daily basis.

[Cardinalphan]

Thank you, that is great to hear. On the CPAP side, I sleep like a baby with it. First 3 to 4 months was a struggle with the hose. Now, I can't imagine sleeping with out it.

[ajack]

They swore I could use it but I never could. My mouth constantly feels like it is filling with air. I tried a chinstrap, tape, etc. I then decided to try the amara view mask. I finally was able to fall asleep but woke up within an hour gasping.

my first guess is that the ramp or minimum (if auto) pressure is too low and isn't enough air exchange. I would try a minimum 6 cm on both ramp and minimum (if auto)
did central apnea show up in your sleep study?

It sounds like you will do better on the full face mask for now. You can go to nasal ones after the machine/therapy is working for you.

as said if your machine takes a sd card, download sleepyhead and post the charts

[Arlene1963]

Hi Cleveland George, and welcome.

I completely understand how frustrated you must be feeling, not to mention tired, considering that your sleep has been so awful for 9 months and you're having trouble adjusting to using CPAP.

I'm wondering, how was your sleep before CPAP and what led you to have a sleep study? Were you having symptoms of sleep apnea?