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Noob with Central Sleep Apnea, AHI 145
#1
Howdy!

Just finished my 4th night on CPAP / ASV. It's helping, not miraculous overnight, but better.

Just wanted to say hi, maybe get some encouragement to stay on CPAP. I don't love it, but reading here, seems no one really does at first.

I did read that Kindle book about Apnea by Phil Elmore. Liked it a lot, and it gave me hope. (And it's funny, which helps.)

I am 51 years old. Mildly asthmatic as a kid. Smoked average two packs of ciggs for 30 years. Quit 4 years ago. Vaped nicotine heavily for about 3.5 years. Quit that first day of Spring this year.

Was still more or less healthy until January this year, started getting horrible asthma. Over the past year, I've dealt with a crap-load of health events that have taken me from fairly healthy to feeling like I'm dying. I can't even do basic household stuff anymore like take the trash cans to the end of a 30-foot driveway without getting horribly winded.

Here's what's up with me over the past year:

-Acute Severe Asthma – Status Asthmaticus – doesn’t respond to normal asthma treatment.
-Sleep Apnea (AHI 145, events per hour 3 times what’s considered high)
-Central Sleep Apnea (brain driven, not body driven - my brain give up on trying to breathe. Meh.)
-GERD (severe acid reflux, stomach acid in lungs)
-Polyps in colon (pre-cancerous, adenomatous, removed)
-Thyroid nodule, non-cancerous.
-Allergies (VERY severe, IgE levels 10 times high) (had to get rid of cats. meh. Had to stop eating anything with soy, eggs and a few other common things)
-High blood pressure 184/104, now on medication, down to average 135/90
-Mild hiatal hernia
-Mild tachycardia (heart at rest 95-105)
-Mild Diverticulitis
-On Prednisone, need to taper off slowly. Was at 30 Mg for six months. I've gone down to 25 mg over last two weeks.

-Hospitalized when I fainted and broke my nose
-Broke a rib coughing.
-Hospitalized a second time in past year, for a bad asthma event.

I'm on a mess of medications, and really especially need to get off the prednisone. Have gained 40 pounds in 6 months on that crap.

Several doctors, including pulminologists are baffled about how I suddenly got this sick, but dealing with the GERD helped a lot. First pulminologist missed that for months I ditched her and got a better doctor after a hospitalization (and a recommendation from the hospitalist).

New doc figured out that I had GERD on day one of meeting me. He put me on meds for that, also told me to tilt my bed 5%. Bot things helped a lot. Overnight I went from feeling like I'm drowning to just being out of breath all the time. (I was getting stomach acid in my lungs.)

I've had two sleep studies, found out I have very bad sleep apnea and central sleep apnea. Finding out about the latter kinda made me bummed out, it sounds like my brain is trying to kill me. I'm a pretty upbeat guy and it sucks to hear my brain doesn't have as much self-preservation as me. lol.

Of all the problems I've had over the past year, I think the apnea, and especially central apnea diagnoses are the most depressing, the thought that I basically need "life support machines" seems extreme, and made me feel really old overnight. lol.

But I'm committed to doing what I can to get more healthy. I do think using the machine EVERY NIGHT without fail, and even when I nap, is going to make a difference. It already has so far. Here's the difference in 4 nights:

--Gone from sleeping 12 hours a night and being exhausted every day to sleeping about 7 hours a night and feeling more rested. I still feel sleepy during day, but it's a warm mellow sleepy rather than an irritated crunchy sleepy.

--Don't sweat in my sleep. I used to get up and change my t-shirt like five times a night because it was soaked with sweat.

--Don't toss and turn. Actually barely move. I lie on on pillow and push another pillow up against my mask to keep it tight, and pretty much stay in that position, comfortably, all night.

--Don't seem to dream much, at least not dreams I remember. I kinda miss this. My dreams were often chaotic and vivid, but entertaining.

So anyway, just glad this forum is here and I wanted to say hi!

--Michael
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#2
Hi Michael

I am 12 days into CPAP and I have been blessed that most of my teething problem issues have been addressed with all the information that is available here on this forum for me to try with my issues.

I too have had high blood pressure issues that could not be explained away with "White Coat Syndrome" and then the Docs would up my two hypertension meds which didnt seem to help me.

"High blood pressure 184/104, now on medication, down to average 135/90"

is pretty much the same result for me as well - which is such a relief that it has come down and is going down all the time and now I have to watch that it does not go down too far and I get faint or dizzy because I am still on the same level BP meds.

One morning before CPAP, my blood pressure was SYS 206 which is when they want to put you in hospital.

I will use my CPAP every night because I have to - my apnea is classed as Severe (O2 desats to 73%). I have so far had a dream run and forced myself to adjust ASAP because my BP levels were getting really scary and I dont want to go there ever again.

Dreaming
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#3
(12-12-2015, 06:43 PM)Diane1048 Wrote: Hi Michael....

Thank you, Diane! Nice to hear from someone else who's new.

I just installed the SleepyHead software and checked my card, Here's the initial info:

The last time you used your ResMed VPAP Adapt ASV...
was last night (on Friday, December 11, 2015)
You had an AHI of 1.70, which is considered reasonably good
You machine was on for 8 hours, 50 minutes and 2 seconds.
You had significant periods of major mask leakage.
Your EPAP pressure was under 14.98cmH2O for 95% of the time.
Your IPAP pressure was under 22.02cmH2O for 95% of the time.
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#4
Thanks Michael for the stats - I have been thinking about downloading the software so I can see how I am actually doing from when I was not on CPAP.

I am seeing my Sleep Clinician next week and so I think they will read the ResMed Card - I was just worried that it might wipe the stats from the card before I saw the Clinician - does anyone know if I am safe to do this before I go to my appointment?

I would be really interested to see if I have mask leakage as it seems like I am all sealed but who knows what goes on in your sleep however the nasal pillows are in place when I wake up Smile

Anyways, I am so happy to be able to talk to people who have had their lives changed through CPAP therapy and I guess it can only get better and better from now and into the future!
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#5
Diane1048 You can download SH and then take out your SD card out of your machine. Make sure you slide the little tab on the SD card to lock, then put in your computer and let it read your data into SH. Then remove SD card and unlock and put back into the AirSense.

I do it all the time and it does not lose or change any data.


MichaelWD64 Welcome to ApneaBoard! Glad you're here where you can hear from experienced CPAP'ers who can give you some helpful advice. Keep at it! Good to hear it's having positive effects for you!!
APNEABOARD - A great place to be if you're a hosehead!! Rolleyes

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EVERY ACCOMPLISHMENT BEGINS WITH THE DECISION TO TRY!
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#6
(12-12-2015, 07:26 PM)cate1898 Wrote: Diane1048 You can download SH and then take out your SD card out of your machine. Make sure you slide the little tab on the SD card to lock, then put in your computer and let it read your data into SH. Then remove SD card and unlock and put back into the AirSense.

I do it all the time and it does not lose or change any data.


MichaelWD64 Welcome to ApneaBoard! Glad you're here where you can hear from experienced CPAP'ers who can give you some helpful advice. Keep at it! Good to hear it's having positive effects for you!!

Thank you Cate!

And Diane, yeah, I was just about to post this:

Be sure to LOCK your SD card before reading it (physically move the little switch on the side), and UNLOCK it (physically move the little switch on the side back) before re-inserting in your CPAP machine.

MWD
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#7
Many thanks Cate and Michael - I feel more confident now downloading the software and having a look at what has been happening with me while I am asleep Coffee
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#8
(12-12-2015, 08:23 PM)Diane1048 Wrote: Many thanks Cate and Michael - I feel more confident now downloading the software and having a look at what has been happening with me while I am asleep Coffee

Very cool!
MWD
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#9
Hi MichaelWD64,
WELCOME! to the forum.!
Oh my, you have been through a lot.
It’s good to hear that you are getting adjusted to your ASV machine and that you are going to use it during naps, too. It sounds like you are off to a fairly good start, keep up the good work.
Hang in there for more responses to your post and much success to you with your CPAP therapy.
trish6hundred
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#10
(12-13-2015, 12:21 AM)trish6hundred Wrote: Hi MichaelWD64,
WELCOME! to the forum.!
Oh my, you have been through a lot.
It’s good to hear that you are getting adjusted to your ASV machine and that you are going to use it during naps, too. It sounds like you are off to a fairly good start, keep up the good work.
Hang in there for more responses to your post and much success to you with your CPAP therapy.

Thank you very much Trish!

MWD
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