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

[Asjb]

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,
[/quote]

OK - fingers crossed! Here are the links to the images:



http://imgur.com/a/H6q7C

(one single and one album with 5 screenshots). I couldn't find anywhere on the Imgur website to tell it to display thumbnails?

(a) 2 screenshots, year's summary. The improvement in AHI and hypos since May is after adding expiratory relief (EPR) at +3 - the max allowable with the Airsense I use. This improvement has made me think that a further increase in EPR (i.e. with a BiPAP machine such as the Aircurve 10 VAuto) might help me.
(b) 2 screenshots. July 15 2015. Bad night with asthma. One of only 5 occasions in a year with any <Cheyne Stokes> respiration. CPAP 10.2
© 2 screenshots. 6 october 2015. Marked muscle weakness, including waking briefly with full limb paralysis (therefore will have had respiratory muscle weakness as my genetic disorder affects all voluntary muscles). APAP 9-12

Thank you very much again to anyone who can advise me.
Best regards

[Sleeprider]

The new graphs are an improvement, but please try to have events and pressure on the same graph. In Sleepyhead you can drag the bar graphs into a new order and they will report that way.

Events, Pressure, Flow and Leaks are the most important. You do not have a leak problem, and can probably include snores or flow limits as an alternative.

Your graphs indicate you are using different settings on your APAP. On the night with AHI of 8.5 you used fixed pressure of 10.3. With fixed pressure you had more OA and less CA than on the night with APAP. On the night with AHI at 6.5 you used a range in auto of 9-12. On that night, the hypopnea events were greatly increased as the machine approached maximum pressure. I don't see any indication you are using EPR.

It's not really possible to identify trends based on the different settings. If we agree that obstructive apnea is the higher priority for you to resolve, then you appear to do better using APAP. I'm not sure we can identify settings that will resolve H and CA. You might want to continue to trial APAP and increase the pressure range to 9-14. Also, if you find that pressure somewhat uncomfortable to exhale against, then you can use EPR to reduce pressure during exhale.

[Asjb]

<Your graphs indicate you are using different settings on your APAP. ....... I don't see any indication you are using EPR...... You might want to continue to trial APAP and increase the pressure range to 9-14. Also, if you find that pressure somewhat uncomfortable to exhale against, then you can use EPR to reduce pressure during exhale.

Dear Sleeprider,
Thanks very much for this. Yes, I know the two days show different settings - I have been <experimenting> with APAP and CPAP settings and I have not found much of a difference in outcome so far. I don't know why Sleepyhead doesn't show I was using EPR but for months (including the two nights of the graphs) I have been using EPR at the Airsense maximum of +3.

I'm sorry to be negative, but I have already tried APAP up to a max of 14 and found it intolerable - the battle of breathing woke me up all night and gave me very sore chest muscles and uncomfortable aerophagia. The max I can tolerate (and get some decent sleep) has been 12.2 so far. It's because of this that I have been leaning towards trying BiPAP, to give me a higher max pressure to control the obstructives but with more breathing relief to make it tolerable. What do you think - should I ask to try BiPAP?

Thanks again
best regards

[Sleeprider]

As you can see from my profile, I use an Auto BiPAP. I tolerate APAP just fine, but the comfort of bilevel is not something I plan to give up. In my case, I simply went on Craigslist and got it. I have no idea how long it will take you to persuade doctors and insurance companies to provide you one, but I bet your final cost would be higher than the $350 I paid for a unit with less than 300 hours on it.

FWIW my family physician has written a prescription at my request for bilvel, but I have not tried filling it with the help of insurance. Anyway, this is an alternative, as is vendor #2 on the list linked at the top of the forum. You can ask to try bilevel, (i.e. get a prescription) or just go do it. I'm sure you'd find it more comfortable. The path of least resistance is your personal physician. He is probably more willing to script a bipap than the hard-headed "specialists" you've described. I actually see one on CL for $200 in Erie PA not too far from me.

[Asjb]

[quote='Sleeprider' pid='138315' dateline='1447433305']
As you can see from my profile, I use an Auto BiPAP.... but the comfort of bilevel is not something I plan to give up....FWIW my family physician has written a prescription at my request for bilvel, Anyway, this is an alternative.... The path of least resistance is your personal physician. He is probably more willing to script a bipap than the hard-headed "specialists" you've described....

Dear Sleeprider - I'm very pleased for you that you have the auto BiPAP that you need and like and that you even have a <spare> prescription for such a machine. My family physician refused to give me a prescription for any machine.

I think the situation may be different here in Europe? - there is no market in second-hand machines and you cannot buy a new one from any company without ... yes ... a prescription. I am reluctant, for reasons of financial security, to buy such an expensive item off Craigslist (or similar informal listing sites) in a different continent.

So, I still need to <build my case> to present to the next doctor for my decision that a BiPAP machine would be appropriate for me.

May I ask please if anyone else out there on the Board can give an opinion?

Thanks very much.

[Sleeprider]

Asjb, I'm sorry my suggestion was not helpful. You did not fill in any location information, so I had no way to know you're posting from Europe. I'm aware the acquisition of equipment is more difficult in countries where health care is provided through the government. There are of course many advantages to that system, however circumventing the medical coverage process is not very easy.

Your AHI as measured by your machine is a bit high for what is considered acceptable here. If your doctors disregard that data as useful, I have no idea what you can do beyond your current efforts to optimize treatment.

[Asjb]

Asjb, I'm sorry my suggestion was not helpful. You did not fill in any location information, so I had no way to know you're posting from Europe. I'm aware the acquisition of equipment is more difficult in countries where health care is provided through the government. There are of course many advantages to that system, however circumventing the medical coverage process is not very easy.

Your AHI as measured by your machine is a bit high for what is considered acceptable here. If your doctors disregard that data as useful, I have no idea what you can do beyond your current efforts to optimize treatment.

Dear Sleeprider - thank you very much for all your time and help. Yes! - things can get complicated here in France...

I just rather keenly need your and other expert Board members advice as to whether I should further adjust my CPAP/APAP (and if so, to what), or a BiPAP might be ideal for me. I don't think I have any need for ASV, but perhaps people out there who know more than me about sleep apnoea might think otherwise?

Thanks again. with best regards.

[DariaVader]

Looks like when you had the pressure set from 9 to 12 that your AHI was lower than at straight CPAP. When it was set to the range, it stayed topped out for the majority of the night as well. If that is representative of a typical night on Auto, and it were my cpap I would set it 9 to 15 and see how that works. You have some CA events, and if those become so frequent or so long in duration that they require treatment then you will need an ASV, but from the data you provided I don't see that this is definitely the case.

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.

because of this and because EPR=3 is helpful I would prescribe Bilevel if I were the doc, but I am not. You might try upping the max by very small increments to see if you can increase the top end comfortably - A lot of people get sore lungs when they are becoming used to CPAP, as it causes you to breathe more deeply than you are accustomed. If there is a mild sedative you can use while you become inured to the pressure, that may also be an option.

For the constant allergy stuff, I use saline + xylitol nasal spray. I initially bought Xlear brand, but started making my own. I also have constant allergy symptoms and it has helped a lot


On second thought - I wonder if ASV *is* what you need to help you breathe through the muscle weakness you described...

[Sleepster]

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.

Ask him to refer you to a doctor who does practice in your country.

[Asjb]

[quote='Asjb' pid='138213' dateline='1447366387']
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.

Ask him to refer you to a doctor who does practice in your country.

Dear Sleepster - I have long since done that. The situation is complicated - I will not bore you with the details. I see a new cardiologist here next April.