Complex Apnea Diagnosis--VERY SCARED

[ColdHands]

Hello all!  I'm new here.  I have several other health issues, but I had my first sleep study last Friday.  They said I didn't have apnea bad enough to put me on the machine that night, so I didn't think too much of it.  However, I got a call from my doc today and they said I have complex apnea, both central and obstructive.  I didn't think much of that either until I read what causes central and it involves the brain etc.  My mother died of Multiple Systems Atrophy so I am keenly aware of brain issues and It, to be frank, scared the poo out of me.

Am I overreacting?  I don't have any symptoms that I'm aware of that SEEM neurological.  I work in a highly stressful job, and I'm 52, post menopausal.  I had thyroid cancer and have no thyroid.  I read that hypothyroidism can cause damage to the nerves and cause central apnea, but I really don't know what to think.

I have to go back from my titration study soon.  But I got this call at work and now I'm sitting here wondering if I have my mom's disease (it was a lot like ALS) and scared to death I am going to go that way.

Anyone else here have complex and not have any other weird underlying issues?  I'm just looking for some good news today.

Thanks
Cold Hands

[SarcasticDave94]

Welcome to the Apnea Board,

You might just be overreacting a bit. I have very high pre-existing Central Apnea, and I probably don't have brain issues.

Central Apnea is merely a situation where CO2 levels drop to the point of not triggering the breath signal. Just being on CPAP can cause Centrals, this version is treatment emergent CA. However, others like myself and possibly yourself, is what I call pre-dominant or pre-existing CA. These show on your diagnosic study, the test before the PAP mask is first worn. Idiopathic centrals is also in the mix as unknown medical cause.

I want you to research a device, the ResMed AirCurve 10 ASV. This will combat all Central Apnea. And it does combat Obstructive and Hypopnea events as well.

[ColdHands]

Thank you so much for your response.  I've had so many medical issues in my life so far and my mother going through that disease is frozen in my brain.

So what does pre-existing CA mean?  Like, it wasn't caused by the CPAP, you just had it?

All the Dr. Google stuff says its a brain issue causing you not to breathe.  I know there can be many issues.

Thanks for helping.  I will look into that machine and see what they plan to do for me when I get my next study.

CH

[OpalRose]

Hi ColdHands.
Welcome to Apnea Board!

Once you've had your titration study done, be sure that you request a complete copy (not just the summary) of the study and titration.

You can then post the results here, and the knowledgeable folk like Dave and others can help advise.  It does sound like you may need to be on an ASV machine, but certainly too soon to know.  

Either way, try not to fret over this too much.  There are many here that are diagnosed with Complex and/or Central Sleep Apnea.

Visit the Wiki (link at top of page) and you will find many good articles on this subject.

It may not seem like good news to be diagnosed with central sleep apnea, but at least you've found Apnea Board, and you will receive the help you need.

[SarcasticDave94]

Yes, pre-existing Centrals means you have them before a CPAP enters the equation. It's not a death sentence by any possible meaning.

The things you face in the future to be treated are likely:

A Titration with ASV to see how the Centrals respond, not different than other Titration studies, just includes ASV

A echocardiogram to test your LVEF percentage, it's not a big deal, typical is report to hospital imaging, get echocardiogram, a type of ultrasound to record audio/visual of heart, cardiac doc reviewing this & signs off that ASV is ok to pursue, only reason for this is a flawed medical study in the past indicates ASV is bad for user's hearts, it's not so don't worry unless you have CHF-congestive heart failure, you'd know this if it applied

Then get 3 amigos to work together to get you an ASV, doc, DME, insurance.

Finally, use the ASV. We can help get you setup and it's surprisingly easy. Get the free report tool OSCAR to look at your data.

[ColdHands]

Thank you again.  I don't have CHF (as far as I know).  Last major heart test I had was in 2016 prior to my thyroid removal surgery.  I had a barium treadmill to check out why I had pain over my left chest.  They decided it must be muscle related and that has proven, so far to be the case.

In 2017 I was diagnosed with an esophageal lieomyoma.  Bascially a lipoma in my windpipe.  It was found benign, but I have to go back in the near future (was supposed to be last year but covid) to get another endoscopic U/S to see if its grown.  They seldom become an issue, but I have been having serious GERD issues (worse than before) and I wonder if this is part of my OA issues and maybe causing the CA to manifest. Who knows.  I haven't actually SEEN my report to see what percentage of my apnea is OA and what is CA.  So I have no way of knowing at this point.  Hopefully I will see it soon.

Thanks again.  I've been super tired and just assumed it was my liver disease causing my issues.  I have PBC (Primary Biliary Cholangitis).  My immune system obviously hates me.

CH

[Sleeprider]

About 10 to 15% of the individuals that come to Apnea Board have central or complex apnea. Most are idiopathic, meaning no known cause, and most of those have thrapy onset central apnea events, but a few have centrals related to opioids, heart, pulmonary or neurological issues. Your situation is not unusual and many individuals on this forum use a noninvasive positive air pressure ventilation device like adaptive servo ventilation (ASV), spontaneous/timed bilevel (ST) or even intelligent volume assured positive air pressure (iVAPS). Whole these are advanced positive air pressure (PAP) devices, they are fairly common here, and we can help you with whatever your titration evaluation recommends. That said, the gold standard for complex sleep apnea is ASV, not ST, so we want to give us feedback on your study and the recommendation of your doctor. It will cause you nothing but anxiety and stress to speculate on whether your complex apnea is in some way related to your mother's condition. You may be screened for a neuro condition, and you should raise your concerns of your mothers MSA with your doctor so they can do appropriate testing to confirm or eliminate this possibility. Meanwhile, the stress and speculation will not be helpful to you. My point is, complex sleep apnea is relatively common, and rarely points to a central nervous system disorder.

[SarcasticDave94]

OK you may have done this, but just a reminder, ask the test facility or your doctor to send you the detailed copy of the report. If you choose to, you may redact personal info and then post in this thread. We can help pick the report apart and help you learn what it says.

If they give you a hard time with it, mention HIPAA law permits you to request and receive it. And that no isn't the acceptable answer.

[ColdHands]

Will do.  Thank you!

[ColdHands]

Thank you for your kind words.  I have suffered from health anxiety since I was a child, but haven't done badly with it since, quite frankly, I've had actual issues to deal with.
I really would rather not know about the neurologic issues if its my mom's disease, as it doesn't matter because there is no treatment for it. I would rather go ahead in ignorant bliss for a while longer.  My doctor my ask me to get a brain scan to make sure I don't have any tumors or anything though.  I have had cancer before, but have been in remission for over 5 years.

Thanks
CH