I think I need a BiPAP machine but doctors are really not helping

[Asjb]

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.

[Terry]

Sorry to disregard pretty much your entire post, but without data, everything is just a guess.

If you can load your data into SleepyHead and post screenshots of all the charts on the "Daily" tab, I'm sure some members would be happy to take a look and see if they have any ideas.

[Asjb]

[quote='Terry' If you can load your data into SleepyHead and post screenshots of all the charts on the "Daily" tab,

Of course, sorry.

Attached are two screenshots - first with a night of muscle weakness, below it is a night with bad asthma.

Thanks

[PaytonA]

There seems like there might be an easy solution. Your cardiac specialist seems very anxious for you to get good sleep apnea/CPAP treatment. He can write the prescription for your CPAP machine and supplies. Discuss it with him and see if he will write the prescription for you. I think that the Aircurve 10 Vauto might be a little overkill but should give you whatever you might need.

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?

I am not sure but I think that you might be looking at this backwards.

Best Regards,

PaytonA

[Asjb]

[quote='PaytonA' pid='138210' dateline='1447365164']
There seems like there might be an easy solution. Your cardiac specialist seems very anxious for you to get good sleep apnea/CPAP treatment. He can write the prescription for your CPAP machine and supplies. Discuss it with him and see if he will write the prescription for you. I think that the Aircurve 10 Vauto might be a little overkill but should give you whatever you might need...

Hello and thank you PaytonA - unfortunately (long story) my cardiologist is in another country to where I live (and have health insurance) so I would have to pay for the machine and accessories myself if he gave me a prescription. But, yes that remains an (unwelcome) possibility.

Why do you think the Aircurve 10 VAuto might be <overkill>? and so how do you think I can improve the situation if instead I stay using the Airsense?

[Sleeprider]

You probably don't need a sleep study, but a titration study could be advantageous in your case to evaluate bilevel and perhaps ASV. Bilevel is more for comfort and exhale pressure relief by providing pressure support for inhalation, and relief for expiration; while ASV does that and changes pressure on a breath by breath basis to resolve periodic breathing and central apnea.

You clearly have some significant issues with asthma and unspecified cardiac problems. It might be possible to offer better suggestions if you post some Sleepyhead data that shows what you're concerned with. Do you have COPD or other obstructive lung disease? Have you seen indications of CA in your SH data? I think if you can give the members of this forum more specific information, we might be able to guide you in working with your doctors, or finding a more effective solution. Unfortunately, you are not the patient that your doctors are familiar with, so they aren't much help. That should cause them to refer to to someone with special expertise in more complex cardio-pulmonary sleep apnea treatment. You might have to identify that expert for them, or just continue to come up with your own treatment plan. You've done pretty good at getting educated and taking control of your therapy so far.

[Asjb]

You probably don't need a sleep study, but a titration study could be advantageous in your case to evaluate bilevel and perhaps ASV.....
It might be possible to offer better suggestions if you post some Sleepyhead data that shows what you're concerned with. Do you have COPD or other obstructive lung disease? Have you seen indications of CA in your SH data? I think if you can give the members of this forum more specific information, ......That should cause them to refer to to someone with special expertise in more complex cardio-pulmonary sleep apnea treatment. You've done pretty good at getting educated and taking control of your therapy so far.

Dear Sleeprider - thanks very much for this. A titration study sounds a good idea - the only problem is that I have many <routine> OSA nights which are adequately controlled by straightforward Airsense CPAP or APAP. It wouldn't be possible to arrange the titration study for a night when I have asthma or muscle weakness as they both arrive unpredictably. I don't have any other lung disease nor cardiac failure so, no, I don't have Complex Sleep Apnoea, nor any periodic breathing (let alone Cheyne-Stokes) nor any complex cardio-respiratory syndrome, just muscle weakness nights sometimes with more central apnoeas (but less than 5/hour) and hypos than usual and poor quality sleep and more desats. Ditto (with more obstructives and hypos) with intermittent asthma. The cardiologist is specifically concerned about the risks of inadequately controlled sleep apnoea with associated desats and pulse changes provoking more episodes of abnormal cardiac rhythms and/or another heart attack (myocardial infarct).

You ask me to post some Sleepyhead data? - I have already done so in this thread. Is there more information I should be posting please? If so, what would be helpful?

best regards,

[Sleeprider]

Asjb, I missed the doc file you posted. Here is a tutorial for posting images directly: http://www.apneaboard.com/wiki/index.php...pnea_Board Word is a relatively vulnerable application to open online, so the images might be a better approach.

Your events are mainly hypopnea. You did not include the pressure graph, so it's not possible to correlate events with pressure. Try to include Events, Flow Rate, Pressure, Leak rate and if possible snore and flow limitation. The AHI graph is not as useful.

[Asjb]

Asjb, Here is a tutorial for posting images directly: http://www.apneaboard.com/wiki/index.php...pnea_Board Try to include Events, Flow Rate, Pressure, Leak rate and if possible snore and flow limitation.

Hello again and thanks for the links for image tutorials. We're past midnight here in Europe so I'll sort out better images tomorrow.
best regards,

[DariaVader]

you have a complex situation and you need (deserve) doctors who will pay attention to the whole situation and will work as a team. Docs who will do this do exist, but sometimes you have to look for them. Get your cardiologist involved --- he may have particular recommendations about who would be most inclined to help - he may also consult with sleep docs and prescribe the modified treatments himself. YMMV but I've recently had the best luck with docs at a local medical university. My doctors there will actually call a meeting and discuss me (or my husband) and come up with treatments that are targeted. Docs at this U tend to see patients 2 days per week and spend the rest of their time teaching, studying, and catching up on case load. It can be harder to get in, but the care you receive is a lot more personal.