First followup

I'm seeing my doctor who is a neurologist/sleep doctor, tomorrow for the first time since my study. Help my compile a list of questions to ask when I'm there.

I think Your list should be comprised of things you are having problems with....we don't know what they are!!!

"Please give me a copy of my sleep report for my records."

and

"Can you go over my sleep report in some detail and please explain which parts of the sleep report point to your diagnosis?"

Also---it may help if you bring along a trusted companion---your bed partner if you don't sleep alone is perfect.

Beyond things to ask, are things to tell him you want:

1. Full copy of your study and titration study (if done already) -- you are entitled by law to have this
2. If you were titrated already, and he is writing a Rx for your equipment, you need to:
a. Get a copy of the Rx for your own records
b. Be sure the Rx says the specific machine, mask, and that "Dispense as Written" is on it.
c. Insist on a fully data capable machine -- not just compliance data but full efficacy data ( the most popluar are IntelliPAP AutoAdjust w/Smartflex, ResMed S9 AutoSet, PR System One REMstar Auto --- Notice I only listed the auto machines....because those can be run in cpap mode, if necessary, and provide the best of both worlds.)

Do you have insurance on which you will be depending to supply you with the machine and supplies? If so, you should call them before hand to find out what they cover, copays, if machine will be rent to own or outright purchase, how often are your supplied replenished. If you have a deductible and copays, DO THE MATH..... sometimes those will cost you more in the long run than just buying your own machine.

If you have not been titrated yet (where they put the mask on you and figure out your pressure), then you have some time to get your ducks in a row. Read, read, read this forum.... ask questions, read the wiki, and become educated to the best of your ability BEFORE getting caught up in the crazy world of DME shenanigans.

Best of luck!! Keep us posted on your progress.....

Thanks robysue, Obviously I'll mention any difficulties I'm have having. I wouldn't have thought to ask for a copy of the report though. Great idea. Thanks

Emelia, thank you too. Actually I already have my equipment, Resmed S9 Autoset, with humidifier. I have four masks now , 2 quattros in a small and medium, and 2 activa LT in a medium and large. Up until now I have been dealing with the DME people according to what I was prescribed by my doctor. I am seeing him for the first time since the study, tomorrow. I'm doing fine as far as compliance, but I am awake a lot of the time just staring, thinking, adjusting and scratching. I am also trying to adjust to sleeping on my side. I have always tossed and turned, but usually end up sleeping on my stomache. Now I have a lot of neck pain too from the belly sleeping. I have 6 daughters, the youngest is 18, so I'm always worrying too. Its hard too sleep when they are not home. I need to go to bed early if I want any sleep and the kids are working or out till later.

trytryagain,

With regards to

but I am awake a lot of the time just staring, thinking, adjusting and scratching.

Two things insomniacs often get told by doctors:

1) "You get more sleep than you think you do: Lying awake and worrying about how much sleep you're getting is counterproductive." This may or may not be true for you, and given an apnea diagnosis, you've also got the arousals from the apnea causing sleep deprivation as well as the insomnia.

2) "Try managing the insomnia through good sleep hygiene." The usual sleep hygiene suggestions for managing insomnia are well worth trying to see if they help. Two that help me with my insomnia are: (a) don't do anything in your bed except for sleep and sex, and (b) if you've been tossing and turning for an hour and are less sleepy than you were when you went to bed, get up and do something relaxing and relatively mindless outside the bedroom until you start to feel sleepy. Note sleepy does NOT equal tired and/or exhausted. Feeling sleepy means that you feel like you are close to falling asleep. Tired and exhausted describe how you feel physically; it's (unfortunately) easy to be tired and exhausted without being sleepy.

Good luck!

Had my visit. It went well I guess. Doctor listened and spent time with me unrushed. He seemed genuinely impressed with my involvement in my own care. No changes in pressure or anything like that. Mentioned yoga for relaxation, rather than taking alprozolam for anxiety. (i was using it occasionally to fall asleep, but he said it could cause worsening apneas be of the relaxation of neck and throat muscles. He said the ambien was better for that. (i have had success with ambien, without morning grogginess). He wants another follow up in 2 months.

trytryagain,

Do look into the yoga. It may or may not work for you, but it does wonders for me. Right now, yoga is what's standing between me and being driven bonkers by the going to bed with CPAP routine.

Good luck!