newbie - what support should I have?
hi, I'm really struggling, getting worse sleep with this setup than without it and really wish I hadn't requested the sleep study, which I did because of insomnia, not concern over sleep quality. Result of the study, which I was not given a copy of, was severe apnea on my back, none on my side. I tried side sleeping for a few weeks but then decided I should get the machine while I have insurance. Then the nightmare started! I get terrible sleep one night, sleep the next, terrible the next etc. It's making it extremely difficult to work, and quality of life is dreadful. I resist going to bed because I dread the whole process.
I saw the "sleep doctor", a psychologist who is only in his office once a week, once after the study, he gave me the results verbally. I phoned yesterday and an admin said I can get a hard copy next week (pressing print on a computer doesn't take that long....)
I found my own CPAP place. They are all nurses, but not trained in apnea, only the machines. I'm on my third mask, thinking of going for another today and my tolerance has been going down the longer I use one. I have phoned the sleep study admin person and talked to her a couple of times as my titration study is next Friday.
Should I be getting more support from the professionals? I'm considering my GP's offer of a couple of weeks off stress leave, which I really didn't want to do, but I'm getting less sleep than before and can't function. I'm in Canada, Ontario and there are a lot of rules here, I'd pay for more help but not sure how to access it.
RE: newbie - what support should I have?
It's difficult to determine what pressure to set it at or even what type of machine you need if you haven't had a titration study.
Try to hang in there until you have your titration done. The titration will be your starting point as far as I'm concerned. You'll have a better idea of what type of treatment you need. Whether it is CPAP, APAP, BiLevel, ASV and what pressure you'll need or if you can use a range as with APAP.
Also, it will take time for your body to get used to xPAP therapy. Having the wrong machine or inadequate pressure could make things worse. Since your titration is not that far away, perhaps hold off on using the machine, if you sleep better without it, at least until you have a better idea of where your therapy needs to be.
RE: newbie - what support should I have?
katrinae,
I'm somewhat confused. You haven't had your titration study yet, so how is it they give you a loaner AutoCpap with a fixed setting of 6, obviously set on CPAP mode?
It's not going to hurt you, but it's doubtful you have the correct pressure setting, and that's not going to help either. How did the doctor settle on a pressure of 6, based on what?
These are questions you need to ask your doctors, and yes you should be getting more support from them, but unfortunately, we don't always get that from the medical profession.
You still need to be proactive and ask questions. In other words, be a pain in the
you know what.
Once you have your titration study, hopefully they will set your auto CPAP machine appropriately. We can help, but without that information, we would just be quessing.
RE: newbie - what support should I have?
Hi, I am going to try and move up the titration study as I am going nuts with lack of sleep. He picked 6 based on the initial sleep study. It sounded to me like it was a starting level. My events are under 1 when I am able to sleep so I think it's doing OK. The machine is not in automode. I would like an auto adjust but to have insurance pay for it the doctor will have to prescribe it and there are rules.
For my first sleep study I actually slept because I cycled hard for 2 hours that day so I was physically exhausted. Given how I'm sleeping in my own bed right now - last night I finally conked out around 4 a.m.- I'm not counting on much for the next sleep study (too cold to cycle!)
RE: newbie - what support should I have?
katrinae,
Keep us posted on your titration results. Hope all goes well!
RE: newbie - what support should I have?
I'm puzzled also about getting a loaner before the titration sleep study and being told to use pressure 6. I am also in Ontario and I was not given a machine until after my 2nd sleep study which was the titration.
About masks, your loaner time is the time to trial different masks. I had no problem getting a different one and lucked into one that works great for me - the ResMed P10's (nasal pillows). Ask your DME about changing to something more comfortable for you.
Ask your GP to prescribe you a mild sedative or something for your titration sleep study if you are that worried about getting to sleep. That way they will be able to titrate you because you will sleep.
Good luck and keep us posted!
APNEABOARD - A great place to be if you're a hosehead!! 
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EVERY ACCOMPLISHMENT BEGINS WITH THE DECISION TO TRY!
RE: newbie - what support should I have?
(10-30-2015, 12:30 PM)cate1898 Wrote: I'm puzzled also about getting a loaner before the titration sleep study and being told to use pressure 6. I am also in Ontario and I was not given a machine until after my 2nd sleep study which was the titration.
The CPAP place I walked in to would not sell me machine, they only provide loaners until the 2nd study is done. Other people at work bought machines right away. I suspect they don't get paid by OHIP (government service provider) unless the 2nd study is done.
About masks, your loaner time is the time to trial different masks. I had no problem getting a different one and lucked into one that works great for me - the ResMed P10's (nasal pillows). Ask your DME about changing to something more comfortable for you.
Yes, I'm back to my first, after trying 2 others (mind you, I've put the machine away last night as I am phobic about it at the moment and not sleeping at all with it- slept 8 hours in a split shift last night without it....), and talked to another company about getting the one I want - Dreamwear one.
Ask your GP to prescribe you a mild sedative or something for your titration sleep study if you are that worried about getting to sleep. That way they will be able to titrate you because you will sleep.
I am going to give in and do that, otherwise - see phobic comment - I'm not likely to sleep at all. I've had intractable insomnia for years and tried very hard not to go the medication route, but may have to for the next while.
Good luck and keep us posted!
Thank you!!!
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