No Explanation For Central Apnea - Scary

[john.michael]

Hi,

My diagnostic sleep study revealed primary central sleep apnea that the Dr eventually told me is idiopathic.
I have no history of heart problem, stroke, altitude, or opiate use. In other words, none of the seconday causes I have read about.

My sleep Dr said it isn't worth pursuing the underlying cause of the central sleep apnea. I am happy to be receiving treatment, but it continues to bother and alarm me that I have no explanation for my brain failing to keep me breathing while asleep.

I saw my Primary Care doctor yesterday, and his advice was to see another sleep pulmonologist for a complete second opinion. I am not fully opposed to that, but I foresee it will lead to another sleep study and I am skeptical an explanation will be identified. I am on the fence about going down that road.

I have done some searching, and have found very little discussion about this.

Has anyone with primary central apnea learned the cause?
Am I being silly to pursue this? --Or would I be crazy not to??


John

[rested gal]

If the ASV treatment was making me feel much better...more rested... there's something to be said for not worrying further about the cause. Especially since the usual "causes" have been looked for.

That said (that phrase -- and the use of parentheses -- really does get addictive... ) I'd be just as curious as you are to KNOW "why."

If I were going to consult with another sleep doctor about the centrals, I'd probably pick a neurologist rather than a pulmonologist.

[ozij]

If the ASV treatment was making me feel much better...more rested... there's something to be said for not worrying further about the cause. Especially since the usual "causes" have been looked for.

That said (that phrase -- and the use of parentheses -- really does get addictive... ) I'd be just as curious as you are to KNOW "why."

If I were going to consult with another sleep doctor about the centrals, I'd probably pick a neurologist rather than a pulmonologist.

So would I.

[Jordy]

Having a second opion is never a bad thing.

That said, I have idiopathic Central Sleep Apnea as well. And it drove me crazy at first because you really don't know the cause, and looking it up shows some really scarry things that *could* cause it. My sleep Dr is a neurologist. And he has told me it could be from small protusions in the brain, all the way to the fact that I have asthma, and shallow breathing. And that they really don't know what is causing mine. Thus the idiopathic label. They would just treat the CSA.

Also my Dr has said that Central's can be hard to manage. I failed the CPAP/BiPap Sleep Study. As well as failing the second follow up ASV Sleep Study. In the end they ended up putting me on 2 LPM of O2 with a Bipap running at 15/11. That seems to produce the best results for me, and the same results as a ASV with 2 LPM of O2. Just had a lower out of pocket cost for me.

But in the end, I think you just kinda have to get used to the idea that your Brain is wired a little diffrent. The serrious things like Stroke, Heart failure would have been picked up by now. And as for CSA, you are just a little idiopathic.

[Alicia41964]

John,

I have learned that with sleep apnea, there is, more than not, a genetic link. Did/does anyone in your family have sleep apnea of any type? Did anyone pass away in their sleep with unexplained causes? My father passed away 28 years ago in his sleep. He had minor cardiac issues, albeit, but his doctors were pretty sure that he had some sort of sleep apnea. Imagine, knowing this almost 30 years ago! What took them so long to make the public aware of its' potential effects? Anyhow, they believe he had central sleep apnea, combined with obstructive. My older brother has been wearing a CPAP for the last 11 years, after his wife got sick of his snoring. Me, I was diagnosed last year on the tail of recovering from multiple pulmonary embolisms. Both my brother and I have obstructive apnea only.

This is in no way a clinical reason for your situation, but perhaps it can enlighten you to "google" further and dig dig dig. I wouldn't hesitate one second to get another opinion. Just remember, though, that sometimes, ideopathic means just that. There may not be a sound clinical reason why you have this. The body, as much as we've learned about it, is still a great mystery! Best of luck and keep us posted on anything that you find out.

[john.michael]

If the ASV treatment was making me feel much better...more rested... there's something to be said for not worrying further about the cause. Especially since the usual "causes" have been looked for.

That said (that phrase -- and the use of parentheses -- really does get addictive... ) I'd be just as curious as you are to KNOW "why."

If I were going to consult with another sleep doctor about the centrals, I'd probably pick a neurologist rather than a pulmonologist.

I actually asked if if iShould see a neurologist and he said he really liked this Dr he is sending me to and has had good results for patients with him. My GP has steered me right on other things so I will try his pulmo and decide after that whether to pursue neuro

Meanwhile, I don't yet know I'm feeling much better and rested (some, admittedly)

[john.michael]

Having a second opion is never a bad thing.

That said, I have idiopathic Central Sleep Apnea as well. And it drove me crazy at first because you really don't know the cause, and looking it up shows some really scarry things that *could* cause it. My sleep Dr is a neurologist. And he has told me it could be from small protusions in the brain, all the way to the fact that I have asthma, and shallow breathing. And that they really don't know what is causing mine. Thus the idiopathic label. They would just treat the CSA.

Also my Dr has said that Central's can be hard to manage. I failed the CPAP/BiPap Sleep Study. As well as failing the second follow up ASV Sleep Study. In the end they ended up putting me on 2 LPM of O2 with a Bipap running at 15/11. That seems to produce the best results for me, and the same results as a ASV with 2 LPM of O2. Just had a lower out of pocket cost for me.

But in the end, I think you just kinda have to get used to the idea that your Brain is wired a little diffrent. The serrious things like Stroke, Heart failure would have been picked up by now. And as for CSA, you are just a little idiopathic.

Sounds just like me. Thanks for helping me know i'm not alone, one thing, I haven't "failed"any sleep studies, per se. My dr seems confident adapt sv machine will reduce/eliminate these central apneas! Sure hope he is right!

[john.michael]

John,

I have learned that with sleep apnea, there is, more than not, a genetic link. Did/does anyone in your family have sleep apnea of any type? Did anyone pass away in their sleep with unexplained causes? My father passed away 28 years ago in his sleep. He had minor cardiac issues, albeit, but his doctors were pretty sure that he had some sort of sleep apnea. I

. No other apnea we know of. My dad died from copd. Not even any good snoring stories in the family!r

This is in no way a clinical reason for your situation, but perhaps it can enlighten you to "google" further and dig dig dig. I wouldn't hesitate one second to get another opinion. Just remember, though, that sometimes, ideopathic means just that. There may not be a sounding stories clinical reason why you have this. The body, as much as we've learned about it, is still a great mystery! Best of luck and keep us posted on anything that you find out.

will do! Thanks!!