How to approach doc about trying a-pap.

[quietmorning]

I have a sleep doc appt on Monday. I really need this one. I'm back to being just absolutely deeply fatigued all the time. I had surgery last year and it took me a LONG time to recover from it (nine months for something that should have had a 10 week recovery) - I just refused to heal. (I am not diabetic) My ahi went from an average of 2 to 6.5 in a matter of weeks after the surgery and I started getting violent unrelenting headaches.

I made an appointment and went in to see the doc. They agreed to bump up my pressure from 6 to 7 and I went on my way, only to call them back within a week to ask them to bump it up to 8. It is at 8 now, I still feel completely fatigued. My AHI is usually between 4.5 and 7.5 depending on the night. I have an auto machine that has NEVER been used on auto. I asked about it when I first got it - the doc said they only use the auto for a home sleep study. Gah. Ok.

I DO want another sleep study - but I also want to at least try the auto pap - even if it's just for a couple of weeks or a month just to see if there is a difference. Unlike most people, I sleep better on my back and have more apnea when I sleep on my sides. I'd like something to adjust with me, because I need to move at night to release the pressure from my back.

How would I go about doing this? What is the best wording? I'm not the most articulate person in the world.

Thank you in advance for your help!

[cosmo]

Do you pay a co pay each time they do they a simple pressure change?

[quietmorning]

Do you pay a co pay each time they do they a simple pressure change?

No, I only pay copays when I go in for an appointment. I didn't pay a dime for them to change it to 8 - and they gave me the choice of having a sleep study or bumping up the pressure. I told them to bump it because it was right before Christmas and I work for a shipping company, so we were getting slammed and there was no way I was going to be able to do a sleep study at that time.

She said that bumping was reasonable since the pressure was so low in the first place, but if it were higher, then she would insist on a sleep study. I didn't realize it could get SO BAD so quick.

[kaiasgram]

quietmorning, a thought -- did you have an attended sleep study that showed your sleep apnea is positional? If so I'd use that as the focal point of my request. That and the fact that your AHI is not consistently down below 5. "I want to see if I can sleep better and bring my AHI down by using a range of pressures since I'm needing to change my sleep position more often now."

Edit: I just saw your last post -- sounds like your doctor will insist on a sleep study if you want to make any change at this point. But from what you said in your first post your doctor never prescribes APAP for ongoing therapy? Hmm....

If you can't get your doc to work with you, are you comfortable with learning how to adjust your own pressure and monitor your therapy with software?

[bjcyorkiemom]

I don't know about your relationship with your physician, but I went in knowing I breathe easier on my side, but have hip pain and can't stay there long so spend a good amount of time on my back and have many more apnea's on my back. I told the Doctor those things and told him what I thought I wanted (an auto machine, set on auto to adjust with me) and ask him if that was a possibility. He agreed with me. I don't know, maybe I was lucky.

[zoocrewphoto]

Has your doctor bothered to look at any data from your machine? Since he already doesn't like apap, it sounds like you will need to do it on your own. I would put it in auto mode, start with a small range, such as 8-12, and then look at the data. See what it is doing.

My mom was on cpap for years. She used it faithfully for years at a time, then let it go for awhile, and got started again when I got my machine. Actually, she saw my mask, asked to try it on, then got one just like it for herself. But she felt like she never got much improvement. Her machine was set to straight 10. She had tried to get another sleep study, but medicare wouldn't pay for one. So, after I had my first folllowup with my sleep doctor, who I really liked (different doctor from my mom's), I let my mom do 2 partial nights with my machine. Her old machine didn't have data. And I am a severe night owl, so it didn't cost me any sleep to let her do 4 hours with my machine. The first night, I set my machine to a straight 10, just like her machine. Her ahi was 3.4, but she had apneas that were long, one was over a minute long. We did another night with it set for 10-13 to see what the machine wanted to do. It went up top 13 several times. My mom made an appointment with my sleep doctor, and we took her old study results and the two reports from her using my machine. The doctor looked at the data, prescribed a new machine with full data and a range of 10-15. At her 6 week followup, my mom was happy to say she felt better, finally. And he looked at the data and said the settings could stay like that.

You've got a good machine. Put it in apap mode and see what it wants to do, and if you feel better. If that doesn't work, THEN get a new sleep study. But really, the apap machine set to the right range may be all you need.

[Julie]

Hi, I can't remember if this was addressed or not, but have you tried taping, or a FF mask? If you're losing all the Cpap air out of your mouth when asleep you won't feel better anytime soon.

[quietmorning]

Hi, I can't remember if this was addressed or not, but have you tried taping, or a FF mask? If you're losing all the Cpap air out of your mouth when asleep you won't feel better anytime soon.

Good morning, Julie,

Yes, I used to tape, don't any longer because it was a waste of tape and my lips got pretty sore. I never have a dry mouth - and I can't STAND sleeping with my mouth open - I will wake up instantly if it is open. My husband says he has never seen me with my mouth open in sleep. (He's a night owl and goes to bed way after I do.) I never have any leaks any where.

I tried the ff mask when I had a cold early on in my therapy - so not going back there again. I actually do much better with the nasal pillow mask. I get better air pressure and no leaks.

They told me after my surgery that they expected my apnea to worsen - and boy did it. It went from hypopnea to full apnea.

[quietmorning]

quietmorning, a thought -- did you have an attended sleep study that showed your sleep apnea is positional? If so I'd use that as the focal point of my request. That and the fact that your AHI is not consistently down below 5. "I want to see if I can sleep better and bring my AHI down by using a range of pressures since I'm needing to change my sleep position more often now."

Edit: I just saw your last post -- sounds like your doctor will insist on a sleep study if you want to make any change at this point. But from what you said in your first post your doctor never prescribes APAP for ongoing therapy? Hmm....

If you can't get your doc to work with you, are you comfortable with learning how to adjust your own pressure and monitor your therapy with software?

Yes, my sleep study was attended and he tested the positional several times as he couldn't believe I was so backward. But, my apnea isn't due to weight, it's due to the structure of my airways and has ALWAYS been an issue - so it's just how I'm made. :-/

I really am amazed that they gave me the auto machine and absolutely refuse to use it. That just doesn't make sense to me. I go to one of the best sleep centers in the country - so I don't want to make too many waves. . .they are the only sleep specialists any where close to where I live. I don't want them to refuse to treat me over this. . .so I'm wary of making changes for myself. . . but if my health becomes an issue (like it is becoming) - then I'm going to do what I need to do and let the chips fall where they may.

[quietmorning]

Has your doctor bothered to look at any data from your machine? Since he already doesn't like apap, it sounds like you will need to do it on your own. I would put it in auto mode, start with a small range, such as 8-12, and then look at the data. See what it is doing.

My mom was on cpap for years. She used it faithfully for years at a time, then let it go for awhile, and got started again when I got my machine. Actually, she saw my mask, asked to try it on, then got one just like it for herself. But she felt like she never got much improvement. Her machine was set to straight 10. She had tried to get another sleep study, but medicare wouldn't pay for one. So, after I had my first folllowup with my sleep doctor, who I really liked (different doctor from my mom's), I let my mom do 2 partial nights with my machine. Her old machine didn't have data. And I am a severe night owl, so it didn't cost me any sleep to let her do 4 hours with my machine. The first night, I set my machine to a straight 10, just like her machine. Her ahi was 3.4, but she had apneas that were long, one was over a minute long. We did another night with it set for 10-13 to see what the machine wanted to do. It went up top 13 several times. My mom made an appointment with my sleep doctor, and we took her old study results and the two reports from her using my machine. The doctor looked at the data, prescribed a new machine with full data and a range of 10-15. At her 6 week followup, my mom was happy to say she felt better, finally. And he looked at the data and said the settings could stay like that.

You've got a good machine. Put it in apap mode and see what it wants to do, and if you feel better. If that doesn't work, THEN get a new sleep study. But really, the apap machine set to the right range may be all you need.

They go over a very simple data sheet with me each time I go - when I talk to the PA's. The last time I went I talked to the PA and then the doc. The doc reads the indepth info and then comes to talk to me at length, but doesn't show me the data he reads.

I have an appointment with them next week - I'd rather talk to them first than jump the gun. We'll see how it goes. Sometimes there's a bit of a power struggle over my care. . .as there is with a lot of docs. . . I'm not a doc, but they don't have to live in my body and care for it for the rest of their lives, either. . .so that tension is always there. Heh. Which I'm sure any one on the planet can attest to.

Any way. . thank you for your informative post. . . I'll keep you updated on how it goes.

[quietmorning]

I don't know about your relationship with your physician, but I went in knowing I breathe easier on my side, but have hip pain and can't stay there long so spend a good amount of time on my back and have many more apnea's on my back. I told the Doctor those things and told him what I thought I wanted (an auto machine, set on auto to adjust with me) and ask him if that was a possibility. He agreed with me. I don't know, maybe I was lucky.

I really have more of a 'group' of doc's than one specific. They each have the PA evaluate each appointment, then the doc that specializes in that particular problem comes to talk to me. . . or more than one doc if there is a complicated issue. I don't see them enough to really get a true relationship going - as I've done very very well up to the point of when I had surgery. I think that this will, at the very least give me ample opportunities to get to know them a little better **chuckles**.

I think they may be willing to move if there is good communication. They have been very supportive the other issues. . .as long as it's a true issue. They seem to be very careful of issues that are medical in nature or issues that the patient needs to work out - which I appreciate very much.

Any who. . .yeah. . .I think your example is one that I'll keep in mind when I go, as our issues are very similar. Thank you!

[quietmorning]

Thank you everyone for your replies - huge huge help!!

I have a game plan - and am anxious to see them to get this worked out next week.

[BlackSpinner]

Just down load a clinical manual and take possession of your machine and your health. Put it in apap mode with the lower level at 8 and start tracking your data.

[chunkyfrog]

If the doc notices something different, show him some good print-outs, and ask him to "help you understand the figures".
Most docs like to take credit for a positive outcome, rather than work against it.

[cosmo]

I have an appointment with them next week - I'd rather talk to them first than jump the gun.

Its a good idea to run it by them first since there is some review. Don't want to ruffle feathers.

Maybe they have some plan. Pick their brain on their reasoning. I was shipped an System One apap with 5-15 and was on my own since. I don't know what I'm going to do if they ever call me in as I don't use the machine I was given. I bought a different one.