Starting AutoPAP

[spondy]

Thanks for the long, detailed message.  Will email my rheumy. I've been with her for ~10 years, and she's really good. She reads everything that turns up about her patients, including the sleep study report, which didn't mention the adjustment I had to make to get the study to run, because that info apparently didn't get passed on to the person who prepared the report.  So it shouldn't be too much of a stretch to get her on board.

I also just received the EOB from the insurance company with the language for what they've already approved; the language in your post is not too far beyond that.

I was so happy to hear 2 cm at my last rheumy visit, but I just looked at a Loyola Univ. Chicago web page that says normal is 2--5 inches.  Sigh.  I practice mind-over-matter medicine (if I don't mind, it doesn't matter) just to get through life without being depressed;  that mostly works, but there are times when reality needs to take precedence.  Thanks again.

[spondy]

Response from sleep doc was that "all xPAP machines have you exhale against a pressure of 5 cm," it "just takes a while to get used to CPAP," and I really need an in-lab sleep study/titration to prove central apnea and failure on AutoPAP; I previously failed the in-lab test, because the sleep lab triggers my allergies to the point that I can't sleep even though extremely tired.  So I need to get the allergies treated better so I can pass the sleep-lab study.  

I just woke from another miserable episode with face white as a sheet, urination and a hit of albuterol to get things going again, initial tachycardia but then calming down to normal, coughing, tinnitus (which seems to mostly be triggered by blood pressure variation but hypoxia also triggers it). It typically takes about an hour to feel normal again after one of these episodes.  I'm fortunate to have a cat who sleeps by my head, paws me awake when I stop breathing for too long, and stays close while I'm recovering.

I have an appointment with my GP tomorrow for an annual physical. Maybe get some answers then (she typically refers to a different sleep lab). Hopefully before I shuffle off to Buffalo, buy the farm, ...

[Sleeprider]

Your sleep doctor is treating you for obstructive sleep apnea and is apparently unwilling or incompetent to treat an individual with ankylosing spondylitis with reduced chest expansion. You have special needs, and perhaps a non-allergenic lab capable of testing you. Your medical condition does not infer "Central Apnea", but respiratory insufficiency from someone unable to exhale against fixed CPAP pressure. Based on your doctor's statement " it "just takes a while to get used to CPAP," and I really need an in-lab sleep study/titration to prove central apnea and failure on AutoPAP", I don't think it's unfair to say he doesn't have a clue.

You need a different doctor. Get a referral from your rhumotologist or GP. You need to complain specifically that you are not being treated appropriately for your medical condition(s) and the only thing your current sleep clinic understands is ordinary obstructive sleep apnea. You deserve proper diagnostics and treatment appropriate to your unique needs and you are not getting it. Please be persistent in advocating on your own behalf. While this is not medical advise on the forum, it is not uninformed either. Feel free to share these thoughts with your doctors.

[Apnea Infant]

Hello Spondy

I do not have the knowledge nor experience which Sleeprider possesses. He never fails to take my breath away with his knowledge and humility in the dispensation of it.

I am however writing to support the fact that we have to be the strongest advocate of our own condition(s) and in gathering knowledge through forums or other means, we have to impart such personal information to the health professionals in a firm yet polite way. The health authorities and system in the US is quite different than for us here in the UK but we still have to be firm in the relay of our health condition and be vociferous in the requirement for a particular treatment if we are aware.

Here's hoping that you get the relief you deserve with the strength and tenacity to fight to get appropriate treatment.

[spondy]

My GP just says "talk to your respiratory doctors." On my recent visit to the respiratory doc, I think the resident I saw understood when I first came in and explained my problem. However, that understanding appeared to have been wiped away by the attending, because failed CPAP adaptation is so common...it also


What people don't seem to realize is that when you have low chest expansion, both inhaling *and* exhaling require work. I find this extra work manageable during the day when I'm more active in general, but recently at night, it's another story...also, lying on my back for any extended period of time is exceedingly difficult, so I sleep on my side, and Lord help me if I end up on a soft mattress that sucks me in and wraps itself around me...


Thank you for a few more search keys to use (and terms to use when talking to the doctors). Time to hit up PubMed or something.


I can deal with the episodes when they occur once every six months or once a year, but this summer, I've been having the extreme episodes more frequently (twice tonight).


By the way, I also had a barium swallow test that found difficulty in swallowing thin liquids, so I've been using a straw to avoid aspiration pneumonia. Maybe I need a neurologist, too (the spondylitis may be in remission, but the spinal damage from 30 years of it is still there)

[Sleeprider]

Failed CPAP adaptation is not your problem. In addition to stabilizing your airway, you need some of the work of respiration taken up by a bilevel machine. You clearly qualify for bilevel with your condition and difficulty adapting to CPAP pressure. You need a low EPAP and higher IPAP to make breathing easier. What is so hard for your doctors to understand? This is immensely frustrating to me to see you struggle so unnecessarily. If you want to try sourcing a used BiPAP let me know what part of TX you are in, and I will see what is available at a reasonable cost in your area.