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

[eseedhouse]

However the point I made and you disagreed with me without addressing is that regular table salt contains additives for anti-clumping and iodine.

Well, it's your choice if you don't want them of course. Salt that has been created by evaporating sea water commonly contains a lot of other things besides just salt, including sulfates, magnesium, calcium and potassium. You get whatever is left after the water evaporates and you'd better hope the sea water chosen isn't polluted because the resulting product will contain all those pollution solids.

I didn't disagree with you in my last post about the anti-clumping and iodine being added, I just didn't address it because it was irrelevant to my intended point, or so I thought.

The anti-clumping agent in the Windsor table salt I use is Calcium Silicate, which is ubiquitous in the food supply. It's used in breads, cakes, and many other prepared foods.

Iodine is necessary for life and a lack of it the diet causes goitre. The amounts added to salt are extremely small and unlikely to harm you. If you eat too much salt (and almost everyone does) the salt will probably get you long before the added iodine will.

We are now sending many pollutants into our seas, including drugs flushed down toilets, and the drugs remaining in your urine and feces after you have taken them, which also go through the toilet. These are affecting certain marine organism and causing problems. Even tertiary sewage treatment doesn't remove that stuff.

The salt obtained from ancient seas won't have any of those pollutants in it because we weren't around to pollute those ancient seas.

[PaytonA]

For anyone who is interested.

Not sure about the anticlumping additive. The main problem that salt used to have was absorbing water from the atmosphere and "clumping". The cause for this phenomenon was a small amount of magnesium chloride along with the sodium and potassium chloride in the salt. Magnesium chloride attracts water so strongly that, if one puts some in a sealed container along with some silica gel that has been hanging around for a while, the magnesium chloride will actually pull water from the silica gel.

Producers have found methods for removing the magnesium chloride or sources of sodium chloride that contain negligible amounts of magnesium chloride.

The magnesium chloride in "sea salt" was one of the things that gave it health benefits. For one thing magnesium chloride is more strongly salt tasting than is sodium chloride. For that reason people tend to use less salt with magnesium chloride in it. Magnesium is required by the body for various things and a shortage of that mineral can have negative effects.

Just thought someone might be interested.

Best Regards,

PaytonA

[Asjb]

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......
because of this and because EPR=3 is helpful I would prescribe Bilevel if I were the doc, but I am not... On second thought - I wonder if ASV *is* what you need to help you breathe through the muscle weakness you described...

Dear DariaVader, and everyone else on the Board who was kind enough to take the time to help me to shape my case for my next doctor that CPAP/APAP wasn't sufficiently effective for me -

THANK YOU! very much indeed. A grand victory. I made my case to my muscle specialist. He kindly agreed to prescribe the Aircurve 10 VAuto (BiPAP) I asked for. However - somehow his prescription became a little <lost in translation> and the domiciliary technician actually arrived at my house with a Resmed Aircurve 10 CS Pacewave for me. I said I thought this ASV machine may be too sophisticated (and expensive) for my needs but I'd be delighted to try it (I don't have cardiac failure, so an ASV is not contra-indicated for me). He was fine with that and said if the machine was effective I could keep it. The cost will be covered by the usual system here in France i.e. National <public> healthcare cover plus some, more or less compulsory, top-up personal insurance. Mine costs 1100 euros a year.

Oooh gracious me! - I just SO wish I'd been given this machine many months ago. I have just had 14 nights of the best quality sleep for decades (and this two weeks included 5 nights of a viral bronchitis and upper respiratory tract infection). I wake up refreshed and my daytime energy has probably doubled (again, the best for decades). My *average* AHI is 0.8, in fact 0.1 last night (yes, really). I have had *zero* obstructives and *zero* centrals, just the occasional hypo. 95% flow limitation and <snore> have been zero, and during the 5 nights I wore an oximeter my average SpO2 has risen from 94% (on CPAP/APAP) to 96%. Desaturation events have dropped from 40-120/night to less than 10 (and much shorter ones). Just astonishing. I LOVE MY NEW MACHINE!

My pressure does go up to it's current maximum of 17 (the technician chose the settings for me - he clearly knows what he is doing) but only occasionally and only for a few seconds at a time. The only side effects so far are some red marks on my nose (I've had to tighten the straps to deal with leaks at these higher pressures), a slightly dryer mouth than with the Airsense, and certainly I am more, how shall we say, <windy> (but with no abdominal discomfort). But I am not complaining. I am really, really, not complaining...

I am just so cross that for ten months I had to deal with an assortment of disagreeable and ignorant doctors. I think - I can only speak for here in France - that there may be an emerging issue of non-sleep-specialist doctors starting to offer (financially very viable, I would have thought?) domiciliary sleep apnoea testing but without having the appropriate training or interest to then manage properly those patients who are failing to improve much on <ordinary> CPAP. What are Board members' thoughts on that?

And another thought - my AHIs on CPAP/APAP weren't awful, just rather disappointing + my desats ditto + flow limitation and <snore> ditto & etc. I was always tired but the doctors always blamed that on something, anything, else. My CPAP-induced centrals were never more than 5/hour. So, I didn't really fall into the category of <undertreated complex sleep apnoea>. But it looks as if my life may be transformed for the better by using ASV. How many more thousands of us with apparently just straightforward <obstructive sleep apnoea> may also actually need ASV? Food (but *expensive* food) for thought.

Thank you again to everyone who helped me with their wise advice - it gave me confidence to persist in my search for a new machine.

Would it be helpful if I posted a review of the Aircurve CS Pacewave - but it's only after just 2 weeks of use?

with my best regards and gratitude.

[Sleeprider]

Glad things worked out. Considering the asthma and muscle weakness you discussed early in this thread, the ASV is probably the best solution. I originally raised that possibility in post #5. Glad you got it and your sleep and health are restored.

[Asjb]

Glad things worked out. Considering the asthma and muscle weakness you discussed early in this thread, the ASV is probably the best solution. I originally raised that possibility in post #5. Glad you got it and your sleep and health are restored.

Dear Sleeprider - thanks very much for all your help and time

My sleep is definately restored, it will take more than ASV unfortunately to restore my health - but I'm working on it !

Do you think ASV may be under-prescribed in general?

best regards

[Sleepster]

The only side effects so far are some red marks on my nose (I've had to tighten the straps to deal with leaks at these higher pressures),

Is the Simplus fitting you correctly? If your chin goes inside the mask, you might want to try one size smaller.

a slightly dryer mouth than with the Airsense, and certainly I am more, how shall we say, <windy> (but with no abdominal discomfort). But I am not complaining. I am really, really, not complaining...

Increasing the pressure support may help with this, and a lower minimum EPAP pressure means you'll spend more time at lower pressures.

Sometimes it's a trade off between lowering the pressure to help with the aerophagia at the expense of increasing the number of obstructive events and flow limitations.

I've had to tweak my settings. For me, there is no optimal setting. It's a trade off.

[Sleeprider]

Glad things worked out. Considering the asthma and muscle weakness you discussed early in this thread, the ASV is probably the best solution. I originally raised that possibility in post #5. Glad you got it and your sleep and health are restored.

Dear Sleeprider - thanks very much for all your help and time

My sleep is definately restored, it will take more than ASV unfortunately to restore my health - but I'm working on it !

Do you think ASV may be under-prescribed in general?

best regards

Is ASV under-prescribed? Impossible to answer, however in most cases of central apnea and respiratory insufficiency, the patient is required to fail less expensive CPAP and Bilevel therapies before this level of machine will be approved. We have seen a number of forum members prescribed the wrong machine, when an ASV is clearly indicated by their data. Some quit therapy since CPAP does more harm than good and some stick with it and pursue the ASV. I think it is under-prescribed, but I also think there is a large segment of the professional sleep medicine community that is clueless about anything other than CPAP.

[Don in Austin]

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.

M y opinion is that all three doctors are arrogant dick-heads.

Don in Austin