I think I need a BiPAP machine but doctors are really not helping
My apologies for such a long post - it's a bit complicated.
I am having serious problems with a succession of, in my opinion, ignorant doctors (a chest medicine specialist, an ear/nose/throat specialist and, eventually, someone who was a designated Sleep Specialist). At my insistence, I am shortly to see yet another sleep specialist and I would be very grateful for Board members' opinions to help me think through the situation and to finalise my <position statement> before I see her.
I was diagnosed with <severe> OSA a year ago with minimal, Level 3, home testing (i.e. no ECG, no EEG, no muscle sensors etc). The AHI was 58 (obstructive 32 and hypos 26, no centrals). I was prescribed an Airsense 10 Auto (not the <For Her> version). I have used it every night since, average nightly use of 7.3 hours, settling after a few weeks to use a Simplus full-face mask (I cannot breathe well enough through nasal masks or cushions).
I never had any snoring and did not fall asleep during the day. My symptoms were my partner saying I stopped breathing sometimes in my sleep, and severe fatigue, most days. The fatigue has not improved at all since I started CPAP/APAP - but I persevere with the treatment as I know it's good for my heart.
I have various minor contributory causes for the sleep apnoea: permanent allergic rhinitis, deviated nasal septum, mildly overweight (but losing weight, 5%, has not made any difference to my AHI results), and cysts in my larynx. The problem is I have two major contributory causes, both of which are intermittent and come on at unpredictable times - allergic asthma and a rare genetic disease which gives me intermittent muscle weakness/paralysis (including the muscles of breathing). This weakness can be severe but usually only lasts for a few hours at a time and I have so far been able to manage it at home and not have to go to Emergency. Because of the genetic disease I cannot safely take any drugs for the rhinitis nor for the asthma.
In the meantime I have a significant cardiac history (related to the genetic disorder) with a previous heart attack and a history, and a permanent very high risk, of intermittent serious abnormal heart rythyms. My cardiologist is insistent that my AHI is routinely maintained as low as possible <certainly below 5> and with minimal numbers of events of oxygen desaturation.
On good nights (about 30% of the time) AHI is 1→3 and I wake relatively refreshed. On bad nights, AHI 3 → 12 and I wake up with a <hangover> (I don't drink alcohol - nor eat or drink anything with caffeine) and I remain tired all day. Bad nights with asthma - the apnoeas are obstructive and hypos, & bad nights with muscle weakness - the apnoeas are mostly central and hypos. Neither Rescan nor Sleepyhead have shown any Cheyne-Stokes breathing. Bad nights - oxygen desaturation events can be as often as 10/hour, but very rarely with a pO2 of less than 85%, usually dropping only to 88-90% or so.
I set the machine myself and have tried an assortment of CPAP and APAP pressures. The only thing that has obviously made a good difference is my going against the advice of Doctor #1 by my setting expiratory relief at +3 (the max possible with my machine) - this greatly reduced hypo events and flow limitation, while central events remained the same (0.5 - 3/hr, since I started CPAP/APAP), obstructives have routinely increased a little. I can't tolerate a CPAP pressure of more than approx 10.4 as breathing becomes too much of a <battle> while trying to get to sleep and I wake with sore chest muscles. APAP (recently 9.8 - 12.2) works as well, not better or worse, than CPAP. But on bad nights, neither CPAP or APAP at these pressures will control my obstructives or hypos. Any APAP pressure kicking in at more than 12 or so during sleep wakes me up frequently and also gives me sore chest muscles and uncomfortable aerophagia.
Doctor #1 said <An AHI of up to 15 is just fine. Your tiredness must be due to something else. I will not change your machine. I will not talk to your cardiologist. I know nothing about your genetic disease but I am sure it is not affecting your sleep apnoea. Take lots more exercise, that will help you sleep> (strong muscular exercise is contra-indicated with my muscle disorder...).
Doctor #2 said <An AHI of up to 15 on treatment is very satisfactory. I may be licensed to do home-testing for sleep apnoea but I am only comfortable prescribing CPAP machines. I know little about APAP and nothing about BiPAP so I will not change your machine. You must have treatment for your asthma… No I will not discuss the situation with your cardiologist. There is no point you offering me your SD card as I do not have the software to read it>.
Doctor #3, Deputy Director of a Regional Sleep Centre…, said <You are the most complicated patient I have seen in many months. You are only the second patient I have seen this year who analyses their own data - I'm not at all sure that it is a good idea for you to do that. I have no idea if you can have any treatment for asthma with your other conditions. No there is no point my talking to your cardiologist. No there is no indication for a formal sleep lab test, you've already been diagnosed. No I don't need to see any details of your sleep data, just a summary of a year's statistics please. But you can try a BiPAP machine, set at 6 &12, and see me in 3 months time>. The machine he prescribed me is the Sefam Dreamcurve, he flatly refused my request for a Resmed Aircurve VAuto (BiPAP). The Sefam, in my opinion and in the opinion of my respiratory technician, is an ultimate Brick and, apart from allowing bi-pressure, is considerably less sophisticated than the Airsense 10 I have been using rather unsuccessfully for the last year… (The technician has an Aircurve 10 VAuto in his car! <It is ready for you, but I sadly cannot give it to you without a doctor's prescription>).
Do you think a formal sleep lab test would be helpful in this situation? (but given of course that it might be scheduled for a night when I have neither asthma nor muscle weakness). I'm suspicious that my tiredness is no better because I am having lots of micro-awakenings (RERAs) - but my machine does not record these.
Are there any other adjustments I could do with my current Airsense 10 that might be more successful?
I think I will only be able to have <one bite of the cherry> as regards a replacement machine so am reluctant to move next to the Airsense <For Her> (which I understand records and treats RERAs) as it may not control things on bad nights
I think a BiPAP might work well - to allow for greater pressure increases during my bad nights but still allowing for tolerable inspiration. What do you think?
And because my asthma and muscle problems are intermittent I thought an auto-adjusting <BiPAP> would be the best way forward?
And if so, is my choice of the Aircurve 10 VAuto the best one?
(Because my centrals have never been above 5/hour, I can see no indication for an ASV machine?)
I'd be very grateful for your opinions please. Thank you.