Newly Diagnosed? (One year update!)

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Midwest_non_sleeper
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Newly Diagnosed? (One year update!)

Post by Midwest_non_sleeper » Wed Jun 20, 2018 1:22 pm

Hi all -

I just received a diagnosis from my neurologist after having a sleep study done. Apparently, I have central sleep apnea, meaning it's non-obstructive, but neurological. I guess the part of my brain that controls respiration / muscle contractions doesn't work so well. My AHI was 10.9, which I understand is relatively mild. I did do some reading on it and central apnea seems like pretty scary stuff. Neurologist immediately ordered an APAP for me, although I do not know what brand/kind or anything else about it for that matter. I will receive it next week and I'm actually pretty excited, as I have been feeling in the pits for the last 15 years or more. I''m fairly sure that I have had this condition for a couple of decades now - and it has gone untreated.

The more I read about this condition, the more I realize that it may be a major branch for issues I have. I turn 40 next week, yet I already have calcium deposits in my LAD, which is pretty uncommon apparently, at least for a 39 year old. Clinically, it's the beginning of atherosclerosis, or hardening arteries. I'm in the 96th percentile for that. My T levels are those of a 70 year old man. I have weird chest aches and pains that come and go. Recently, I have been experiencing fairly severe anxiety, which was very unpleasant, as I have never experienced that before. I randomly fall asleep at work ("microsleeps"), and sometimes, though not often, while I am sitting in traffic. If someone is speaking to me, I have the propensity to just fall out. I wake up to the person asking me if I just fell asleep, which I clearly did. I am a military veteran and currently in a profession that is extremely high stress and risk, so I deal with stress / anxiety fairly well, but this new anxiety demon just floored me. I can handle other people trying to harm me, because I can do something about that, but when my brain believes my own body is giving out, that's just...scary and difficult to rationalize.

Anyway, this is my introduction, and I plan to be fairly active as I understand that my APAP therapy just about dictates at what point I live or die, and having a family with two children - I certainly want to extend my life for as long as I can.

If I may ask a question to those of you with central as opposed to OSA, what is different? Is there anything I absolutely need to know before beginning this journey to a better life? Is there any specialized equipment or anything I can do to make this transition easier? I'm trying as best I can to shed some light on this myself, but experience, good or bad, is always beneficial. For the record, I have been snooping on the forums for awhile just reading posts and the wiki.
Last edited by Midwest_non_sleeper on Thu Jul 18, 2019 8:19 am, edited 4 times in total.

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ChicagoGranny
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Re: New apnea diagnosis

Post by ChicagoGranny » Wed Jun 20, 2018 3:02 pm

Click on the edit button (pencil) to edit your post. Change the subject to "Central Apnea - Newly Diagnosed".

People with central apnea are the minority here. The subject edit will get some of the experts to show up soon.

Welcome!

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Pugsy
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Re: New apnea diagnosis

Post by Pugsy » Wed Jun 20, 2018 4:34 pm

Welcome to the forum.

Google "central sleep apnea videos" and start watching.

Let's see exactly which machine your doctor ends up prescribing. The regular apap machine isn't normally the first go to machine for centrals because it can't breathe for you when you don't breathe on your own. Now there are machines that will auto adjust and they have a back up rate available so it can kick in and breathe for you when you don't breathe and it does nothing until it needs to do something. Regular apap machines can't respond to centrals...either with high enough inhale or speed of response.

For masks...you can use any mask type you want...don't let anyone tell you that it just has to be a full face mask because it doesn't.
That's a bunch of hogwash both for the central apnea treatment and the higher pressures you might need when the machine breathes for you. Some DMEs are still in the dark ages telling people that they can't use nasal pillows at higher pressures and that is simply not true.

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Midwest_non_sleeper
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Re: New apnea diagnosis

Post by Midwest_non_sleeper » Wed Jun 20, 2018 7:04 pm

ChicagoGranny wrote:
Wed Jun 20, 2018 3:02 pm
Click on the edit button (pencil) to edit your post. Change the subject to "Central Apnea - Newly Diagnosed".

People with central apnea are the minority here. The subject edit will get some of the experts to show up soon.

Welcome!
Done, and thanks!
Pugsy wrote:
Wed Jun 20, 2018 4:34 pm
Welcome to the forum.

Google "central sleep apnea videos" and start watching.

Let's see exactly which machine your doctor ends up prescribing. The regular apap machine isn't normally the first go to machine for centrals because it can't breathe for you when you don't breathe on your own. Now there are machines that will auto adjust and they have a back up rate available so it can kick in and breathe for you when you don't breathe and it does nothing until it needs to do something. Regular apap machines can't respond to centrals...either with high enough inhale or speed of response.

For masks...you can use any mask type you want...don't let anyone tell you that it just has to be a full face mask because it doesn't.
That's a bunch of hogwash both for the central apnea treatment and the higher pressures you might need when the machine breathes for you. Some DMEs are still in the dark ages telling people that they can't use nasal pillows at higher pressures and that is simply not true.
Alright, so I watched some videos and now I'm thoroughly freaked out. I was reading some stuff about auto-servo ventilation for central? I'm really trying to understand all of this, and it's a whole lot of information. What should I do if I get a "junk" APAP and how do I tell if I have one that is correct for my apnea? Thank you in advance, I know all of you probably get tons of questions thrown at you. Any information that will allow me to get a grasp on this is very appreciated.

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Pugsy
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Re: Central Apnea - Newly Diagnosed

Post by Pugsy » Wed Jun 20, 2018 7:25 pm

Don't freak out...just yet.
APAP isn't a "junk" machine. It just isn't normally used for your condition.

There could be any number of reason why your doctor wants to try apap..maybe your insurance requires it.
We don't know.
Your doctor may have a plan...maybe he's hoping apap will fix the central apnea. It wouldn't be totally impossible...not common for sure but not totally impossible.

You really need to be having a heart to heart with the doctor about all this.
Most apap machines are full data and the newer machines like ResMed's AirSense 10 AutoSet (the apap) or the Respironics DreamStation Auto CPAP (apap) and they will flag centrals if they happen so it will be easy to see if it is working or not.
There is free and easy to use software so you can monitor your own therapy and see if it is working or not.

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Midwest_non_sleeper
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Re: Central Apnea - Newly Diagnosed

Post by Midwest_non_sleeper » Wed Jun 20, 2018 7:39 pm

Thanks Pugsy. I'm not prone to "freak outs", so maybe that was too strong of a word. Let's call it "concerned".

Anyway, I've been reading some first hand experiences of people with CSA, and even though I have been diagnosed with it, mine is apparently very mild (10.9 AHI) Some of the terrifying things these poor people are experiencing I just don't or have not experienced. While it's true that there are times, usually at sleep onset where I am vaguely conscious or I "feel" that I have stopped breathing, it's not a panic feeling, I simply begin breathing again. Mine doesn't seem as bad as those, so maybe that's why my neurologist wants to try APAP first, to see if that will bring the AHI down to 0, or as close to it as I can get. My neurologist is really very good and seems to be up to date on all of this. I'm going to request to see him, although I already have an appointment with him in August as a followup on the APAP. I'm assuming he will want to read the data.

I am still concerned about the correlation between apnea and cardiovascular events. As previously noted, I'm 39 and already have some calcium buildup in my left anterior descending artery, which is pretty uncommon. A part of my brain keeps nudging me and thinking "Hey pal, you have something wrong with your heart...hence the apnea, now do something about it."

Edit: I didn't mean to call APAP machines in and of themselves "junk", but I would assume that there are lower quality ones. Those are the ones I was referring too. As for the software, I fully intend to research and read your posts about them. I am extremely familiar with computers and software (at a...let's call it a forensic level), so I don't anticipate any problems getting that up and running. I still need to get the actual machine first though, which will be Thursday of next week. Thanks again for the info.

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Pugsy
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Re: Central Apnea - Newly Diagnosed

Post by Pugsy » Wed Jun 20, 2018 7:57 pm

Software
https://sleep.tnet.com/equipment

Examples of what you can see
viewtopic/t158560/How-to-post-images-for-review.html
and here
https://sleep.tnet.com/resources/sleepyhead/shorganize

The good news is you caught this when you are young and it can be dealt with and you won't spend the next 20 years accumulating more damage.

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TahoeGal
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Re: Central Apnea - Newly Diagnosed

Post by TahoeGal » Wed Jun 20, 2018 10:22 pm

Hi!
I’m a Central, too. Severe.
VPAP has been amazing! A real life changer.
I’m headed to bed, but wanted to welcome you.

Just a quick point- make sure your Central apnea diagnosis is written down/coded properly, and even if it is, that that your health care providers and dme “get it”. I have had many, many problems with providers focusing on “apnea” and their brain misses the central part. I tell them in person about the Central apnea and point at my head until that little light comes on in their eyes. I underline the word Central when I write it on forms.

I’ll write more tomorrow- feel free to post questions for me and I will try to answer them for you tomorrow.

Welcome. The folks on this board are incredibly knowledgeable. My dr is impressed with this board, and what I’ve learned here. It is not an exaggeration to say that these people probably saved my life.

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Re: Central Apnea - Newly Diagnosed

Post by TahoeGal » Thu Jun 21, 2018 11:33 pm

Hi again. I'd like to speak to your concerns, although Pugsy is super smart.

Do you have a cardiologist? I assume you do, with your arteries problem. It is prudent to have a heart evaluation- as you noted, xpap can make some conditions worse. My personal feeling is to have the heart workup before starting treatment. That said, I did not have a neurological workup for a year, and cardiac workup for 4 years. Part of it was due to $$, as I was paying my own way (8K deductible health insurance) and the correlation between congestive heart failure and central apnea / vpap weren't published then. No problems were found, so I have idiopathic central apnea.

I totally get the weird health things. I have a very, very rare condition, a very rare condition, an uncommon condition, and a couple run of the mills. I do wonder if there's any connection, but none are known. One of my drs suggested that I buy lottery tickets, since I'm so "lucky".

About ASV. Adaptive Servo Ventilation. There are xpap machines using this technology- I use one. Be aware there is also ASV used for life support- adaptive support ventilation. Same, but different. You have been breathing every day and night so far... work through this one day at a time. I understand the anxiety, and it is a valid response.

For me, using the machine was no problem. Apparently some people have trouble getting used to the swings in pressure- the machine will follow your breathing, but when the machine detects breathing insufficiency, my machine will bump up the pressure again and again until it gets high enough to inflate my lungs. It can be a pretty good gale. I've heard the pressure bump bothers some people. I sleep thru it, but mask leaks wake me up.

Finding the right mask was really key in my successful therapy. Perhaps it's my high pressures? On anything but a full face mask my mouth opens and lets all the air pressure out, without getting air into my lungs. I was waking up during the night with my mouth so dry that I couldn't get my tongue to get unstuck, and swallowing was almost impossible. I also wasn't getting proper therapy. I also have a "weak chin" and have a lot of trouble getting a mask to seal to both my chin and my nose. I have found an "acceptable" mask, although my leak rate is very high (which is unacceptable). Be insistent on getting a good mask fit. Because I had to buy all my products, I have spent about 1K finding a mask that works OK. I have gotten real insurance this year and am waiting for a new machine and will try a new mask. You will need be self advocating to get a good mask. The DME's are supposed to let you try out several. Don't stop until you get the right one for you.

And on DME's. You probably know by now that not all DME's are good. Make damn sure you are getting the proper machine. I had to buy my own machine out-right (4K for just the blower). The DME first gave me a brick, and insisted that they gave me the correct machine. Wrong. If folks on this board hadn't clued me into the machine serial numbers to watch for, I may not be here today. Using cpap or apap actually makes my apnea worse (shown in my titration study). The next machine they gave me was a used outdated ASV model. I had to demand the correct machine. When I finally got the right machine, the settings were wrong. I did fix them myself, with help from here and the clinical manual from apnea board. My dr. was floored when I told him what they did.

I am currently working on getting a new machine. I am working with Crapria (my Dr. loves that name!), and they are trying to put me on the wrong machine again. Because I've been thru this before, I'm insisting on brand and model #'s from the get-go. The DME has told me that they're giving me the proper machine, and that the machine I want won't support my pressures. But they can't tell me or my dr. the make and model number. Bull Hocky. I requested my dr. send them my prescription with make and serial numbers, and the DME gave them the same pressures excuse. I had my dr. re-write the prescription again, with the diagnosis of central apnea prominent on the prescription. I'm still trying to get it sorted out. I did talk to the DME again today- they said that the prescription for the machine was cancelled! But she will talk to their superiors tomorrow to have it re-instated. I believe I've talked to Crapria 6 times and my dr. 4 times. Try to communicate in writing, if at all possible. The machine was ordered over 6 weeks ago. Be diligent.

I hope this helps.
E.

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Midwest_non_sleeper
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Re: Central Apnea - Newly Diagnosed

Post by Midwest_non_sleeper » Fri Jun 22, 2018 6:21 am

Thank you all for the kind welcome and the wealth of information thus far.

I have an update.

I spoke with my personal physician yesterday (who, unbeknownst to me, was classically trained in sleep disorders before moving into general practice). It was a fruitful discussion, and she requested copies of my sleep study. After looking at them, in her professional opinion, she believes that I was misdiagnosed with CSA, and that I actually have OSA. As an explanation, she posited that she believes my results were read wrong. She said that there DO appear to be some centrals in the results, but they were only at the beginning of sleep onset and toward the end near waking. There are no centrals throughout the night. She believes that this is strong evidence of OSA in lieu of CSA, due to the body's natural mechanisms in breathing changes while falling asleep and on the verge of waking up. I trust her and she is probably one of the smartest individuals I have ever met. Also, she will literally sit down with me with a notebook and take as much time as needed to actually discuss things with me and have a conversation while writing thoughts down. She does not appear to place much emphasis on time, as she will spend as much time with me as needed. It's pretty refreshing. She is really very good.

My neurologist is out of the country at the moment, so I was unable to get in contact with him. My thought is to let my GP deal with what she believes is a misdiagnosis, as she would probably be very tactful towards a fellow doctor. She is willing to do that, so I will likely let her. Is her explanation a possibility? On my own research, it does seem like what she's saying may be fact, in which case I would be relieved, but I wanted to bring some more experts to bear on the question.

Thanks again for the warm welcome and kind insights, I hope everyone has a great Friday and weekend.

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ChicagoGranny
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Re: Central Apnea - Newly (Mis)Diagnosed?

Post by ChicagoGranny » Fri Jun 22, 2018 10:35 am

Midwest_non_sleeper wrote:
Fri Jun 22, 2018 6:21 am
my GP
She sounds like a keeper!

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TahoeGal
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Re: Central Apnea - Newly (Mis)Diagnosed?

Post by TahoeGal » Fri Jun 22, 2018 10:49 pm

Great dr.

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Midwest_non_sleeper
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Re: Newly Diagnosed?

Post by Midwest_non_sleeper » Thu Jul 18, 2019 8:15 am

One year update!

Ok, so it's been just a couple weeks over a year with my therapy. The first month had a few hiccups, but I persevered through it. As of now right now, my average AHI over the year is .06 and I feel great. More energy (the uh...wife is happy about that), so I'm constantly running around repairing things around the house. Wife told me the other day "Good lord, what happened to you, you're like the energizer bunny!". I gave her a sly wink and then continued recaulking my master bath tub and shower, which needed it badly. I've also taken to getting out more instead of floundering around the house, taking multiple naps. I'm at my private range no less than two or three times a month now, just shooting and enjoying being outside. I'm spontaneously saying "Hey, let's jump in the car and go someplace!" Oh, also, I have more than enough energy to go toe-to-toe with my 12 year old son in our Nerf wars around the house now. Much fun.

I'm so enthralled with the results that I bought a new CPAP as a backup from a member on this very forum. I refuse to sleep without it.

I'm also more active with exercise. I have enough energy to do everything I need to do during the day, at work or at home, and then still have enough to walk the four-legged furballs and then ride my bike in the evenings.

Now, the caveats: I'm eating a bit better, so that could explain some of it, but also around February of this year I started a low dose testosterone replacement therapy. My urologist monitored it for almost two full years while trying various low impact remedies, but it never went up past 100 (which is crazy low for a guy my age). We then discussed it and decided on direct intramuscular injection therapy. Not very much, but it's helping.

So, between the corrected sleep, eating better, and hormone correction, I'm feeling pretty good. Nice bright outlook, not in the dumps anymore. Even colors around me seem to pop out more without having that gray overcast look. Life is good.

I'd like to thank everyone here for the advice, laughs, guffaws or discussions, it is appreciated, even if I disagreed on personal opinions.

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Pugsy
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Re: Newly Diagnosed? (One year update!)

Post by Pugsy » Thu Jul 18, 2019 8:45 am

Congratulations on your success. That's what it is all about. Us enjoying our life better no matter what we do.
I am very happy for you...even a bit pea green...because while I have the apnea thing down pat, some other stuff still messes with how I would like to sleep and feel overall. But then I am 67 years old, female, with some old age issues that I just do the best I can with.
I am superwoman though when I compare it to what it would be without the sleep apnea being under control.

_________________
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If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.

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Midwest_non_sleeper
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Re: Newly Diagnosed? (One year update!)

Post by Midwest_non_sleeper » Thu Jul 18, 2019 9:01 am

Pugsy wrote:
Thu Jul 18, 2019 8:45 am
Congratulations on your success. That's what it is all about. Us enjoying our life better no matter what we do.
I am very happy for you...even a bit pea green...because while I have the apnea thing down pat, some other stuff still messes with how I would like to sleep and feel overall. But then I am 67 years old, female, with some old age issues that I just do the best I can with.
I am superwoman though when I compare it to what it would be without the sleep apnea being under control.
Thanks Pugsy! You are, and continue to be a major asset to everyone here, and for that, THANK YOU.

The amount of knowledge that you supply regarding sleep apnea therapy is worth more to me, and likely many many others here, than any amount of money.