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I think I need a BiPAP machine but doctors are really not helping
#21
(11-15-2015, 12:16 PM)DariaVader Wrote: 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.
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 ........ 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...

Dear Dariavader - thank you very much for such a helpful reply. In fact I tried APAP 10-14 last night - AHI excellent 1.8 with just one obstructive all night. But gosh breathing was a struggle - the pressure woke me (briefly) maybe 20 times. Not a refreshing night. But I shall persevere.

But you encourage me to keep asking for at least a BiPAP machine - and because the asthma and muscle paralysis are intermittent, I thought perhaps the *auto* bi-level function of the Aircurve might be ideal? as I have many routine OSA nights where all is well controlled with a max pressure of around 10. May I ask why you think maybe ASV would be best? Would there be any problems with using ASV for routine nights i.e. when I don't need that function?

My main problems are (1) that none of my sleep doctors have been able to get their heads around the fact that my paralysis and/or asthma are not *every* night and (2) here in France there seems to be no tradition at all of doctors working in teams (or even being prepared to talk to each other at all). They are also in general not at all keen that patients are knowledgable about their own illnesses, nor that they wish to be involved in care decisions. My technician covers a population of several million people and he tells me that I am only his second-ever OSA patient who looks at their own CPAP data...

I will try your <allergy mix>, thank you for the suggestion, as I feel sure that if I can get just a little! air through my nose as well then my CPAP/APAP might be more effective.

Unfortunately, because of the paralysis disorder I cannot take any sedatives or sleeping tablets.

Thank you very much again
Best regards
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#22
(11-15-2015, 01:08 PM)Asjb Wrote: But you encourage me to keep asking for at least a BiPAP machine - and because the asthma and muscle paralysis are intermittent, I thought perhaps the *auto* bi-level function of the Aircurve might be ideal? as I have many routine OSA nights where all is well controlled with a max pressure of around 10. May I ask why you think maybe ASV would be best? Would there be any problems with using ASV for routine nights i.e. when I don't need that function?

ASV will breath for you when you cease to breathe and don't start again within a short interval. I am assuming that the paralysis can cause such an occasion, and you already have a certain number of centrals that put you on the edge. It could be instructive to look at the data that is produced on a bad night. An ASV is expensive and much more complicated to set correctly - I wouldn't know how to do that, but others do. BUT it will perform as a bilevel or apap or even cpap if set to do so.

In the US, the valid reasons to issue bilevel include inability to tolerate *expiratory* pressure.... earlier you had said you need help with inspiration --- bilevel would not address that. Bear in mind that many CPAP users have initial lung discomfort due to increased lung capacity and stretching.

You need to find a specialist for the genetic condition you suffer - such a professional should willingly work with a team of other experts. The ones who won't outnumber the ones who will here also. Finding that doctor who will pay the attn you need is gold.

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
Tongue Suck Technique for prevention of mouth breathing:
  • Place your tongue behind your front teeth on the roof of your mouth
  • let your tongue fill the space between the upper molars
  • gently suck to form a light vacuum
Practising during the day can help you to keep it at night

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
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#23
(11-15-2015, 02:47 PM)DariaVader Wrote: 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
&
You need to find a specialist for the genetic condition you suffer - such a professional should willingly work with a team of other experts. The ones who won't outnumber the ones who will here also. Finding that doctor who will pay the attn you need is gold.

Dear Dariavader,
I *may* (after 18 months of stressful false starts) have actually recently found a <gold> specialist for my genetic condition. After the advice you and others on the Board have given me, I have just put my sleep <case> to him and I have my fingers crossed. He's asked me to prove I don't have cardiac failure (which I don't have) so... maybe a new machine soon. (But I am slightly puzzled - I thought the Aircurve 10 VAuto was a BiPAP, not an ASV (risk with cardiac failure)? - but never mind, if it does actually function also as an ASV then I can use it for CPAP, APAP, BiPAP *and* ASV - and I am sure I will find something amongst those functions that will help me!).

Could you please tell me what your <recipe> is for your homemade Xylitol and saline mix? Thankyou.

with best regards

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#24
Vauto is bilevel. Aircurve 10 ASV is bilevel with ASV. Completely different machines. Manuals for all of the following machines are available from the forum.

ResMed AirCurve 10 S (basic bilevel)
ResMed AirCurve 10 VAuto (auto bilevel)
ResMed AirCurve 10 ST (Spontaneously Timed)
ResMed AirCurve 10 ASV (Adaptive Servo Ventilator)
ResMed AirCurve 10 CS PaceWave Adaptive Servo-Ventilator (adaptive servo-ventilator (ASV) with alarms, and personal minute ventilation algorithm)

Perhaps your therapist is trying to rule out ASV by ensuring you don't have a cardiac history that might contribute to periodic breathing centrals.
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#25
(11-18-2015, 06:13 AM)Asjb Wrote: Could you please tell me what your <recipe> is for your homemade Xylitol and saline mix? Thankyou.

with best regards

There are several online that I found when googling, but this is the one I used:


Distilled Water 1 cup (8 fl. oz.) 237 ml
Salt ¼ – ½ level teaspoon † 1.25 – 2.5 ml †
Xylitol 1 level tablespoon (3 tsp.) 15 ml
GSE 4 drops NutriBiotic®
Grapefruit Seed Extract
Baking soda A pinch or two (optional)

higher level of salt makes the solution hypertonic. I leave it at the lower end unless ill.
هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
Tongue Suck Technique for prevention of mouth breathing:
  • Place your tongue behind your front teeth on the roof of your mouth
  • let your tongue fill the space between the upper molars
  • gently suck to form a light vacuum
Practising during the day can help you to keep it at night

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
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#26
(11-18-2015, 01:13 PM)DariaVader Wrote:
(11-18-2015, 06:13 AM)Asjb Wrote: Could you please tell me what your <recipe> is for your homemade Xylitol and saline mix? Thankyou.

with best regards

There are several online that I found when googling, but this is the one I used:


Distilled Water 1 cup (8 fl. oz.) 237 ml
Salt ¼ – ½ level teaspoon † 1.25 – 2.5 ml †
. . .

Just an FYI in case anybody cares, Morton's Kosher Salt contains 60% more salt per cup than Diamond, so if you need to know how much salt you're using, a sale would be better than a measuring spoon.

Salt is salt, but the flake size/shape is different, so the mass/volume changes.

Terry
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#27
(11-18-2015, 02:57 PM)Terry Wrote: Just an FYI in case anybody cares, Morton's Kosher Salt contains 60% more salt per cup than Diamond, so if you need to know how much salt you're using, a sale would be better than a measuring spoon.

Salt is salt, but the flake size/shape is different, so the mass/volume changes.

Terry

Good point Terry. It's actually a good idea to use salt that does not contain anti-caking agents or other additives. Sea Salt, Pickling Salt, Kosher Salt for this use. I forget this since I only have sea salt in the house.
هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
Tongue Suck Technique for prevention of mouth breathing:
  • Place your tongue behind your front teeth on the roof of your mouth
  • let your tongue fill the space between the upper molars
  • gently suck to form a light vacuum
Practising during the day can help you to keep it at night

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
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#28
> a sale would be better than a measuring spoon.

Also, I meant scale, not sale. 8-)

I'm not sure exactly how a sale would help.

Terry




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#29
(11-19-2015, 12:09 AM)DariaVader Wrote: I forget this since I only have sea salt in the house.

There is no salt on the market that is not "sea salt". This name given to some salts is just a gimmick. Common table salts are all mined from deposits that were laid down under ancient seas that have long ago evaporated. But it all originated in a sea.

Ed Seedhouse
VA7SDH

The above is my opinion.  It is just possible that I may, occasionally, be mistaken.

I am neither a Doctor, nor any other kind of medical professional.

Everything put together sooner or later falls apart.
Your brain is not the boss.
Our forefathers took drugs.
He's no fun he fell right over.
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#30
(11-19-2015, 01:16 PM)eseedhouse Wrote:
(11-19-2015, 12:09 AM)DariaVader Wrote: I forget this since I only have sea salt in the house.

There is no salt on the market that is not "sea salt". This name given to some salts is just a gimmick. Common table salts are all mined from deposits that were laid down under ancient seas that have long ago evaporated. But it all originated in a sea.

http://www.mayoclinic.org/healthy-lifest...q-20058512 Wrote:The most notable differences between sea salt and table salt are in their taste, texture and processing.

Sea salt is produced through evaporation of ocean water or water from saltwater lakes, usually with little processing. Depending on the water source, this leaves behind certain trace minerals and elements. The minerals add flavor and color to sea salt, which also comes in a variety of coarseness levels.

Table salt is typically mined from underground salt deposits. Table salt is more heavily processed to eliminate minerals and usually contains an additive to prevent clumping. Most table salt also has added iodine, an essential nutrient that helps maintain a healthy thyroid.

we can agree to disagree on the sameness and whether or not iodine as an additive is a good idea (didnt help me one bit - i switched long after thyroid bit the dirt)

However the point I made and you disagreed with me without addressing is that regular table salt contains additives for anti-clumping and iodine. These are not something I personally choose to put in my nasal spray. (or in my body for that matter - but that discussion is entirely not the point)
هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
Tongue Suck Technique for prevention of mouth breathing:
  • Place your tongue behind your front teeth on the roof of your mouth
  • let your tongue fill the space between the upper molars
  • gently suck to form a light vacuum
Practising during the day can help you to keep it at night

هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه هههههه
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