Just got AHI (24), waiting on CPAP

[Billymadison420]

Who exactly is this person who is telling you all this hogwash?
Sleep tech, DME, doctor, NP, someone else?????

Insurance is certainly paying for machines now and I can't imagine why filing insurance is on the "back burner".
They would have to medically justify to the insurance company the need for a bilevel device though...don't need to prove need with self pay.
And another thing...since you haven't even had a sleep study done with cpap and mask you have no idea what pressures you are going to need so we can't blame the "you need bilevel" on pressure needs.
And another other thing....the AutoSet machine...it can function like a limited bilevel machine simply by using EPR.
It's limited bilevel but it's bilevel.

Now I got no real problem with someone getting a bilevel and maybe not technically need it....I have one myself just because I like it.....the AirCurve 10 VAuto will do everything the AirSense 10 (or 11) Autoset will do and more.
I just hate for people to be led astray and not understand what all is involved and be pushed to buy something out of pocket when they have insurance to pay for it. There are actually some "pros" to buying something yourself but people need to make sure they are making the best decision for them.
Pros....no one to answer to for "compliance usage crap"...no hassle factor which means no dealing with insurance hassles or headaches.
You can still use a DME and insurance for masks and other accessories if you wish.

I just get a bit leery when I see people being told stuff that I know is either not true or incomplete.
Makes me wonder what else they are telling someone that could be misleading or untrue.

I truly don’t know what to do. They are pulmonary and sleep specialists. Maybe I should get a second opinion?

I guess at this point my other major question is, will a machine actually help me feel better. I know I’ll be physically healthier. And that’s important too.

[Pugsy]

So doctors huh? Sort of explains it...doctors aren't always totally informed about how real life works sometimes especially when it comes to paperwork and insurance. That's what the girls in the office do.
Plus doctors aren't always the easiest of people to understand when they try to explain things.

Anyway....it won't hurt you to buy the bilevel machine....but it is a lot of money and it 's up to you if you want insurance to help out.
Just make sure it is a ResMed AirCurve 10 VAuto...
Or the AirSense 10 (or 11) AutoSet if you elect to go that way.

I am using a self bought ResMed AirCurve 10 VAuto....no way would I qualify to have insurance pay for it even if I wanted to.
I do buy used low hour machines though to save money.
I use it simply because I like what it does and how it does it.

Up to you....you can always buy your own now and later file with insurance and let them buy you a machine and then the one you buy now could be delegated to the spare or travel machine. You are going to want a spare anyway.

[Billymadison420]

Wow. I just had a 2nd opinion appointment with a Major hospital network l in Philadelphia. The kind Dr told me that my first Doctor is a moron. She said that based on the testing I have had that there is NO way to know if I have Narcolepsy at this point and that Apnea could be responsible for the extended REM as well as all the other symptoms. She was shocked at the level of care I got. The good news is my CPAP (and not a BIPAP), by some miracle is available tomorrow. She agreed that a BIPAP was idiotic and made no sense. Man, if you don't fight for yourself nobody else will!

Thank you all for letting me know your thoughts about the doctor because it spurred me (yesterday) to get a 2nd opinion (which somehow I got a next day appointment). I feel much more confident with this Dr. She is an actual Sleep Specialist (and said this other guy was just a Pulmonologist). She is an Academic as well, that is a Professor at the University she practices at. I trust her.

[ChicagoGranny]

She said ... that Apnea could be responsible for the extended REM as well as all the other symptoms.

All of the symptoms you list might be caused by untreated sleep apnea. With good CPAP therapy, you might not need drugs.

tee hee

Good for you!

[Billymadison420]

Chicago Granny has the great crystal ball !!

[ChicagoGranny]

The real test will be to see if all your symptoms go away after you have been using CPAP for some time.

[Billymadison420]

The real test will be to see if all your symptoms go away after you have been using CPAP for some time.

Indeed. That will be the true test. Tonight will be the first night. Hoping I see even a little difference over the weekend. I will keep you posted how it goes.

[Pugsy]

I agree...the first set of doctors were morons. I thought it a while back but was trying to be politically correct and not mention it.

Do me a favor please....don't go down the road for daytime stimulants until if/when you have given the cpap/apap a good extensive trial. They are essentially legalized speed and remember anything designed to increase energy during the day is going to very likely mess with your sleep quality at night. Those drugs just don't/can't wash out of your system quickly enough to not impact sleep itself.

You gotta have sleep first...and preferably good quality sleep for cpap/apap to have any chance in hell of helping you feel better. Daytime stimulants definitely can and will mess with your overall sleep. Common side effect.

Good luck tonight...we will be here if you have questions or bumps in the road.

Your main job right now....getting used to the machine/mask and getting sleep itself. Don't worry about anything else right now or results right now. Nothing matters in terms of results without sleep.

[mummmz]

But then it occurred to me. I wake up gasping. Sweating in the bed. My chest feels tight, sometimes my BP is high, and I feel anxious and foggy.

Have you been tested for asthma? I had the same symptoms even with using a cpap. I had a pulmonary function test which was stopped after 3 minutes and the doctor ordered oxygen because my O2 levels went into the 80s. Then I had a methacholine challenge test where they give medicine to try to induce asthma. I was put on daily and rescue inhalers and feel a lot better now. I'm still on the oxygen. I still need the cpap but I'm not waking up smothering anymore and can go without the oxygen for a couple of hours during the day with my O2 staying in the 90s.

[Billymadison420]

I agree...the first set of doctors were morons. I thought it a while back but was trying to be politically correct and not mention it.

Do me a favor please....don't go down the road for daytime stimulants until if/when you have given the cpap/apap a good extensive trial. They are essentially legalized speed and remember anything designed to increase energy during the day is going to very likely mess with your sleep quality at night. Those drugs just don't/can't wash out of your system quickly enough to not impact sleep itself.

You gotta have sleep first...and preferably good quality sleep for cpap/apap to have any chance in hell of helping you feel better. Daytime stimulants definitely can and will mess with your overall sleep. Common side effect.

Good luck tonight...we will be here if you have questions or bumps in the road.

Your main job right now....getting used to the machine/mask and getting sleep itself. Don't worry about anything else right now or results right now. Nothing matters in terms of results without sleep.

Thanks so much and good note. Yeah all other things being equal I don't want to take these medications for the exact reasons you mention. They are speed. lol. Maybe not amphetamines, for now, but they still raise HR/BP and more. In any case, I will be taking my mirtazapine over the next days/weeks to assure that I can go to sleep with the mask on and normalize it. Maybe in time, I won't need the night aid, but for now, I have to do it. Thanks again for your advice. It really means a lot. Yesterday's doctor's appointment was extremely illuminating. I have lived the last year thinking I have narcolepsy. And while it's possible I do, the doctor's exact words were: "I am not going to even entertain a diagnosis of narcolepsy until you have done CPAP treatment for months". Additionally see said that the REM periods could be caused by Sleep Apnea and that there was zero evidence to support the diagnosis.

She had apparently trained this guy years ago and asked for my permission to speak with him. She was appalled.

[Billymadison420]

But then it occurred to me. I wake up gasping. Sweating in the bed. My chest feels tight, sometimes my BP is high, and I feel anxious and foggy.

Have you been tested for asthma? I had the same symptoms even with using a cpap. I had a pulmonary function test which was stopped after 3 minutes and the doctor ordered oxygen because my O2 levels went into the 80s. Then I had a methacholine challenge test where they give medicine to try to induce asthma. I was put on daily and rescue inhalers and feel a lot better now. I'm still on the oxygen. I still need the cpap but I'm not waking up smothering anymore and can go without the oxygen for a couple of hours during the day with my O2 staying in the 90s.

That's a good question. To my knowledge, no I do not have it. I know at least in my 20s I was tested for it. 35 now. When I get my oxygen taken during the day it's always in the upper 90s. Although on the sleep test it went down to 89.

[mummmz]

But then it occurred to me. I wake up gasping. Sweating in the bed. My chest feels tight, sometimes my BP is high, and I feel anxious and foggy.

Have you been tested for asthma? I had the same symptoms even with using a cpap. I had a pulmonary function test which was stopped after 3 minutes and the doctor ordered oxygen because my O2 levels went into the 80s. Then I had a methacholine challenge test where they give medicine to try to induce asthma. I was put on daily and rescue inhalers and feel a lot better now. I'm still on the oxygen. I still need the cpap but I'm not waking up smothering anymore and can go without the oxygen for a couple of hours during the day with my O2 staying in the 90s.

That's a good question. To my knowledge, no I do not have it. I know at least in my 20s I was tested for it. 35 now. When I get my oxygen taken during the day it's always in the upper 90s. Although on the sleep test it went down to 89.

If 89 is your lowest that's not bad. Oxygen level can go down when you're lying down. Just something to keep in mind and discuss with your doctor if you continue gasping at night.

[Billymadison420]

Million dollar question, should I boil water for “distilled water”?

[zonker]

Million dollar question, should I boil water for “distilled water”?

no. and through no fault of your own, you may have opened a can of worms here on the forum. most of the long time users could give s%^t less about using distilled water. regular tap water will be fine.

myself? i DO use distilled but mainly because i want to put off cleaning the reservoir for as long as possible. the minerals become built up and the tank "needs" to be cleaned when that happens. i'm just lazy enough that i'll spend the money for distilled water.

however, i just discovered that the place i go get that distilled water has change brands to arrowhead. the price has shot up from 98 cents to $1.48!

i may have to rethink my strategy.

[Pugsy]

Million dollar question, should I boil water for “distilled water”?

Boiling water doesn't remove the minerals and in fact it will concentrate the minerals and be a worse mess.

Please read this thread.
viewtopic/t171314/Sticky--Distilled-Wat ... water.html

To get distilled water from boiling water you would need a still to collect and condense the vapor that occurs in boiling process.