Do any doctors care about the data on my auto cpap

[CHanlon]

I pointed out to him how I tweeted my pressure settings from the 4-20 that he started me with to a narrower range, and how my AHI dropped significantly, and he said it was rare to have an AHI reading of 1 or under.

Wait... that's rare?

I do it all the time, in fact the only time my AHI rises *above* one is when I'm stupid, lazy and careless enough to lie in bed talking to my wife without taking my mask off. :-P

I walked into my first followup visit with my Dr armed with a years worth of data and he barely glanced at it. That was 5 years ago. He's not worth my time.

[Mark Douglas]

AHI of 0 or a few tenths above is becoming my norm now that I have found my magic settings. The superduper sleep doc I saw just to see if he had anything to offer only cared about AHI and not so much how I actually was doing. When I tried to show him the additional data available in SH he was clearly not interested. Now GP Doc is very supportive and at last visit he walked in the room. Stopped and grinned and said I looked great having lost a lot of weight and better skin color.

IMHO the UF in SH are the KEY if one has "treated" AHI but still feel like crap. Micro disturbances can disturb one's sleep quality but don't necessarily disrupt O2 level or bring you to consciousness. Some day I will have a pulseoximeter and build an Open EEG just because I want them. My only gripe now is I use a Wisp, chin strap, and tape my mouth shut which is a PITA! I will eventually find or create a FFM but my one gripe is an "up gripe" so mask quest is downgraded. Some recently put me on the RespCARE HYB500 Hybrid FFM and perhaps I will then live happily ever after

[Asjb]

I was wondering if any doctors care about the detailed info on the card in a cpap other than compliance? My doctor could care less about the AHI or anything else on my data card other than compliance..... I think he should care. It can tell him that it is working for me or not. If it wasn't for that data I may think it is working but it may not be....

Couldn't agree with you more! - and the number of replies you've already had to your post might also suggest this is widespread. And not just the USA - I live in France and my sleep apnoea was SO badly managed. So-called 'sleep doctor' #1: knew about apnoea parameters but couldn't care less about my health. Lazy, dismissive and rude. Doctor #2: cared about my health but almost completely ignorant. Quote <I've only ever prescribed CPAP machines - can you explain BiPAP and ASV to me please?>. Doctor #3: (I paraphrase) <Your graphs are very pretty. Gosh you are complicated. What sort of machine would you like? - OK, so here's a prescription for the only BiPAP machine I have ever heard of> (the machine was the Ultimate Brick...).

I finally got help from another specialist I see - he's nothing at all to do with sleep medicine but he seems to have faith in me and believed the case I put to him.

I think most of us just have to take charge of our own condition - and making use of the tremendous information and advice that is available on this Forum.

My significant and uneasy concern is for the probably many thousands of people being inadequately treated for sleep apnoea worldwide who are not computer literate, or who don't have access to a computer, or are too scared to challenge doctors, or have no-one to speak for them, or who are not insured for a machine in the first place. I just wish we could somehow reach out to those people too. Maybe, maybe? an <Apnoea Board Charitable Foundation> - anyone know Bill Gates's email address...

[cate1898]

I'll have to let you know at the follow-up. The PA was happy to look at my Sleepyhead report from my (now failed) used S9. She actually changed my prescription from a straight single pressure to a range that met the oxygen minimum criteria. On the other hand, she knew nothing about the issue of increased eye pressure and concerns about glaucoma.

What's this about increased eye pressure/glaucoma....and CPAP??

[Asjb]

[quote='cate1898' pid='141561' dateline='1449328680']
What's this about increased eye pressure/glaucoma....and CPAP??

Hello Cate 1898 - you may find this article useful:
http://www.medscape.com/viewarticle/811875_print

Describes increased incidence of glaucoma with untreated obstructive sleep apnoea, but also references one publication that suggests that intraocular pressure may actually be increased during CPAP. So the jury would seem to be out at the moment?

[Phill]

Very interesting to read the comments here, and I have expressed my opinions on our UK healthcare system elsewhere.

I have not seen an actual doctor since my original appointment where she put me on a sleep test, subsequently saw a nurse/healthcare assistant or whatever, who gave me my CPAP machine, after the second nurse appointment I was told I could come back in 6 weeks or 52weeks, it was quite clear to me that no further action was going to be taken, fire and forget, I had clearly had my 50cents worth.

It seemed impossible to get through to the person concerned that something was not right as I was waking every morning after about 4 hours sleep.

Thanks to the help and advice given on the site things may be looking better, I actually had 7.5hours sleep last night!!!! clearly as someone else has said you have to take charge of your own treatment.

[Mark Douglas]

My significant and uneasy concern is for the probably many thousands of people being inadequately treated for sleep apnoea worldwide who are not computer literate, or who don't have access to a computer, or are too scared to challenge doctors, or have no-one to speak for them, or who are not insured for a machine in the first place. I just wish we could somehow reach out to those people too. Maybe, maybe? an <Apnoea Board Charitable Foundation> - anyone know Bill Gates's email address...

You are correct. This disorder has made me a lot less intolerant. Now when I see some tremendously overweight person my first thought is have they been evaluated and treated for SA?

[Sleeprider]

Back in 2008 when I started this, I used Encore software and a smartcard reader to get the data off my Respironics Remstar Auto M-Series. That software was a pain in the butt, however I took printouts to my doctor and discussed the therapy. Those charts became part of my permanent record and documented the effectiveness of the therapy.

I have not seen the same interest among sleep specialists, but my primary physicians have consistently been interested in discussing the therapy, charts and my sense of treatment effectiveness. As a result I have never needed additional sleep studies, and my GP writes all the scripts I need based on my instructions for machine type, model, pressure settings, etc.

Once you have a diagnosis, I think most people are better served simply working with their primary physician, rather than a specialist that is vested in return visits, additional studies and inferior equipment that does not provide data that they don't want you to see.

[sonicboom]

pressure and concerns about glaucoma.

What's this about increased eye pressure/glaucoma....and CPAP??
[/quote]

http://www.ncbi.nlm.nih.gov/pubmed/18326715

Invest Ophthalmol Vis Sci. 2008 Mar;49(3):934-40. doi: 10.1167/iovs.06-1418.
Continuous positive airway pressure therapy is associated with an increase in intraocular pressure in obstructive sleep apnea.
Kiekens S1, Veva De Groot, Coeckelbergh T, Tassignon MJ, van de Heyning P, Wilfried De Backer, Verbraecken J.
Author information
Abstract
PURPOSE:
Several reports have demonstrated an association between glaucoma and obstructive sleep apnea (OSA), though the origin of this association remains unknown. In the present study, the influence of OSA and continuous positive airway pressure (CPAP) therapy on intraocular pressure (IOP) and ocular perfusion pressure (OPP) was examined.
METHODS:
IOP, blood pressure, and pulse rate were measured every 2 hours during 24-hour sessions in 21 patients with newly diagnosed OSA. A first series of measurements was performed before CPAP therapy, and a second series was performed 1 month after the initiation of CPAP therapy. OPP was then calculated.
RESULTS:
Baseline measurements showed a significant nycththemeral fluctuation in the average IOP, with the highest IOPs at night. After 1 month of CPAP therapy, the average IOP was significantly higher than baseline. The increase in overnight IOP was also significantly higher. A 24-hour IOP fluctuation of > or =8 mm Hg was found in 7 patients at baseline and in 12 patients during CPAP therapy. The mean difference between trough and peak IOP was 6.7 +/- 1.5 mm Hg at baseline and 9.0 +/- 2.0 mm Hg during CPAP therapy. Thirty minutes after CPAP cessation a significant decrease in IOP was recorded. There was a statistically significant decrease in mean OPP during CPAP therapy.
CONCLUSIONS:
Patients with OSA demonstrated significant 24-hour IOP fluctuations, with the highest values at night. CPAP therapy causes an additional IOP increase, especially at night. Regular screening of visual fields and the optic disc is warranted for all patients with OSA, especially those treated with CPAP.

[sonicboom]

" Regular screening of visual fields and the optic disc is warranted for all patients with OSA, especially those treated with CPAP."