Kate's Therapy

djams · Post by **djams** » Sun Apr 28, 2019 6:59 am

katestyles wrote: ↑
Sat Apr 27, 2019 6:49 pm
Having heard that secondwindcpap don't need a prescription, I am considering buying myself an aircurve vauto.

I would value your thoughts on that.....

So there have been no attempts to discourage katestyles from proceeding with the aircurve vauto. Is that tacit agreement that this is the best thing to do?

Would a bilevel be appropriate as well? Trying to learn here. And maybe help katestyles save a little $$$.

EDIT: disregard all of the above. Turns out that I have more learning to do than I realized!

Thank you Pugsy!

palerider · Post by **palerider** » Sun Apr 28, 2019 1:42 pm

djams wrote: ↑
Sun Apr 28, 2019 6:59 am

katestyles wrote: ↑
Sat Apr 27, 2019 6:49 pm
Having heard that secondwindcpap don't need a prescription, I am considering buying myself an aircurve vauto.

I would value your thoughts on that.....
So there have been no attempts to discourage katestyles from proceeding with the aircurve vauto. Is that tacit agreement that this is the best thing to do?

Would a bilevel be appropriate as well? Trying to learn here. And maybe help katestyles save a little $$$.

The Aircurve VAuto *is* a type of bilevel.

The main point that Kate might do better with that machine is that it allows the higher pressures that she seems to need.

katestyles · Post by **katestyles** » Sun Apr 28, 2019 1:57 pm

Thanks all - some good guidance here.

katestyles · Post by **katestyles** » Sun Apr 28, 2019 3:52 pm

Adding to the puzzle -

There is a relatively high chance that I have Ehlers Danlos syndrome - some of you may have seen this in colomoms posts about her son.

colomom wrote: ↑Thu Apr 25, 2019 8:55 am
Thanks again DAL!

My son does have a number of health issues. He has asthma, a circadian rhythm disorder, and POTS (dysfunction of the autonomic system). He doesn’t have a diagnosis yet but the doctors think he has some type of connective tissue disorder, likely some type of Ehlers Danlos Syndrome. EDS can cause laxity in airway tissues, sleep apnea is much more prevalent in people with EDS than in the general population.

I have never been diagnosed, but my son has, and it makes sense that he got it from me.

One of the symptoms is lax ligaments and malformed collagen and cartilidge. I have lax ligaments, which have cause back issues for 30 years. It would not surprise me if i found that my throat collapses more than it should.

katestyles · Post by **katestyles** » Fri May 03, 2019 11:33 am

Here's a question for you experts.

Is there any reason NOT to use a bilevel device with a max pressure of 25cms?

My wonderful sleep doc lady says she would rather prescribe a stimulant if I still have daytime sleepiness. (And of course, since my numbers are below 5, I'm quite obviously cured!)

Personally, I would rather have the extra cm or 2 available for those times when 20 is not enough, rather than adding to the chemical cocktail I already consume each day.

I have met my deductible for the year.

Pugsy · Post by **Pugsy** » Fri May 03, 2019 11:39 am

No reason that I can think of and I am like you....I would like to have the "more" available just in case.
Now the "more available" may or may not resolve any excessive sleepiness issues that someone might having during the day but it is sure worth trying IMHO when they are hitting the max ceiling fairly often.

Besides...go look at the side effects of those meds to help keep you awake during the day....they also help you stay awake during the night too. Common side effect...insomnia. Just what we need....something else to mess with our sleep quality.

I don't know why she is resisting bilevel so much. Scratching my head on that one.
I haven't seen one thing on your reports that make me scared of bilevel for you.
Only potential negative...if it goes higher the aerohagia monster might want to come for a visit.

katestyles · Post by **katestyles** » Fri May 03, 2019 11:49 am

Pugsy wrote: ↑
Fri May 03, 2019 11:39 am
No reason that I can think of and I am like you....I would like to have the "more" available just in case.
Now the "more available" may or may not resolve any excessive sleepiness issues that someone might having during the day but it is sure worth trying IMHO when they are hitting the max ceiling fairly often.

Besides...go look at the side effects of those meds to help keep you awake during the day....they also help you stay awake during the night too. Common side effect...insomnia. Just what we need....something else to mess with our sleep quality.

I don't know why she is resisting bilevel so much. Scratching my head on that one.
I haven't seen one thing on your reports that make me scared of bilevel for you.
Only potential negative...if it goes higher the aerohagia monster might want to come for a visit.

The aerophagia monster can just hang out with the aliens!

One thing that really has me thinking about this this week is that I am finally beginning to have my act together- and I am feeling a lot better! Don't tell anyone, but after removing the 3 SWJ "apneas" from last night, I had just one REAL event!! The difference to my energy today is noticeable to me, even if not to anyone else. Even when I cracked my favorite mug this morning, my response was to laugh and order a new one, not to slump in depression.

I have had a rough few weeks, with day time naps needed, but I think the last lingerings of my cough are gone, and I am beginning to see smoother waveflows which could well indicate occasional restful sleep.

palerider · Post by **palerider** » Fri May 03, 2019 12:45 pm

katestyles wrote: ↑
Fri May 03, 2019 11:33 am
Here's a question for you experts.

Is there any reason NOT to use a bilevel device with a max pressure of 25cms?

No, none at all, lots of people do, incuding me.

katestyles wrote: ↑
Fri May 03, 2019 11:33 am
My wonderful sleep doc lady says she would rather prescribe a stimulant if I still have daytime sleepiness. (And of course, since my numbers are below 5, I'm quite obviously cured!)

Doctors like that are why we're here, because they're incompetent.

zonker · Post by **zonker** » Fri May 03, 2019 1:44 pm

katestyles wrote: ↑
Fri May 03, 2019 11:33 am
Here's a question for you experts.

Is there any reason NOT to use a bilevel device with a max pressure of 25cms?

My wonderful sleep doc lady says she would rather prescribe a stimulant if I still have daytime sleepiness. (And of course, since my numbers are below 5, I'm quite obviously cured!)

Personally, I would rather have the extra cm or 2 available for those times when 20 is not enough, rather than adding to the chemical cocktail I already consume each day.

I have met my deductible for the year.

i'm a bit confused, which we all know is my default setting.

did you ever talk to secondwind and see about buying a used machine from them?
sorry if you posted this elsewhere and i didn't see it.

katestyles · Post by **katestyles** » Fri May 03, 2019 1:59 pm

zonker wrote: ↑
Fri May 03, 2019 1:44 pm

katestyles wrote: ↑
Fri May 03, 2019 11:33 am
Here's a question for you experts.

Is there any reason NOT to use a bilevel device with a max pressure of 25cms?

My wonderful sleep doc lady says she would rather prescribe a stimulant if I still have daytime sleepiness. (And of course, since my numbers are below 5, I'm quite obviously cured!)

Personally, I would rather have the extra cm or 2 available for those times when 20 is not enough, rather than adding to the chemical cocktail I already consume each day.

I have met my deductible for the year.
i'm a bit confused, which we all know is my default setting. did you ever talk to secondwind and see about buying a used machine from them?
sorry if you posted this elsewhere and i didn't see it.

I didn’t get round to calling secondwind - hubbyhead wanted to think about it for a while, and Sleepdoc lady sent another “no BiPAP” message.

zonker · Post by **zonker** » Fri May 03, 2019 2:04 pm

katestyles wrote: ↑
Fri May 03, 2019 1:59 pm

zonker wrote: ↑
Fri May 03, 2019 1:44 pm

i'm a bit confused, which we all know is my default setting. did you ever talk to secondwind and see about buying a used machine from them?
sorry if you posted this elsewhere and i didn't see it.
I didn’t get round to calling secondwind - hubbyhead wanted to think about it for a while, and Sleepdoc lady sent another “no BiPAP” message.

oh, okay. you are just on hold, then.

gotcha.

djams · Post by **djams** » Fri May 03, 2019 3:06 pm

katestyles wrote: ↑
Fri May 03, 2019 1:59 pm

zonker wrote: ↑
Fri May 03, 2019 1:44 pm

katestyles wrote: ↑
Fri May 03, 2019 11:33 am
Here's a question for you experts.

Is there any reason NOT to use a bilevel device with a max pressure of 25cms?

My wonderful sleep doc lady says she would rather prescribe a stimulant if I still have daytime sleepiness. (And of course, since my numbers are below 5, I'm quite obviously cured!)

Personally, I would rather have the extra cm or 2 available for those times when 20 is not enough, rather than adding to the chemical cocktail I already consume each day.

I have met my deductible for the year.
i'm a bit confused, which we all know is my default setting. did you ever talk to secondwind and see about buying a used machine from them?
sorry if you posted this elsewhere and i didn't see it.
I didn’t get round to calling secondwind - hubbyhead wanted to think about it for a while, and Sleepdoc lady sent another “no BiPAP” message.

Sounds like it's time to get a new sleep doc. That daytime stimulant suggestion is a huge red flag.

Or, make an appointment with your GP, take some SleepyHead evidence with you - explain what's going on, show your competence, explain that you're managing your own therapy anyways (best you can without a bi-level), and ask your GP to write the prescription for you. And be sure to mention that daytime stimulant thing. Geez.

katestyles · Post by **katestyles** » Fri May 03, 2019 8:35 pm

djams wrote: ↑
Fri May 03, 2019 3:06 pm

katestyles wrote: ↑
Fri May 03, 2019 1:59 pm

zonker wrote: ↑
Fri May 03, 2019 1:44 pm

katestyles wrote: ↑
Fri May 03, 2019 11:33 am
Here's a question for you experts.

Is there any reason NOT to use a bilevel device with a max pressure of 25cms?

My wonderful sleep doc lady says she would rather prescribe a stimulant if I still have daytime sleepiness. (And of course, since my numbers are below 5, I'm quite obviously cured!)

Personally, I would rather have the extra cm or 2 available for those times when 20 is not enough, rather than adding to the chemical cocktail I already consume each day.

I have met my deductible for the year.
i'm a bit confused, which we all know is my default setting. did you ever talk to secondwind and see about buying a used machine from them?
sorry if you posted this elsewhere and i didn't see it.
I didn’t get round to calling secondwind - hubbyhead wanted to think about it for a while, and Sleepdoc lady sent another “no BiPAP” message.
Sounds like it's time to get a new sleep doc. That daytime stimulant suggestion is a huge red flag.

Or, make an appointment with your GP, take some SleepyHead evidence with you - explain what's going on, show your competence, explain that you're managing your own therapy anyways (best you can without a bi-level), and ask your GP to write the prescription for you. And be sure to mention that daytime stimulant thing. Geez.

That is the plan - seeing my main doc on Tuesday.

djams · Post by **djams** » Sat May 04, 2019 6:16 am

katestyles wrote: ↑
Fri May 03, 2019 8:35 pm
That is the plan - seeing my main doc on Tuesday.

Best of luck to you.

tyrone747 · Post by **tyrone747** » Sat May 04, 2019 6:53 am

I would try to get a referral to a new sleep doc if that doesn't work. I have a feeling a GP will be loathe to undermine a specialist

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