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What exactly IS my risk of death?
#1
I'm 28 years old, and was diagnosed with Central Sleep Apnea a year ago, with ahi of 45 I believe, though I need to check. Doctors believe I have had Central Sleep Apnea since birth, but mentioned that it's extremely uncommon for someone my age weight and health to have it. (I'm 5'-8" 195 lbs, smoked from age 18-27 and stopped, no head or sports injuries)  I spent a few months using an ASV machine but had to return it temporarily due to insurance complications. I'm on my 5th month without it, and lately I've had days where I wake up feeling ok, and some where I feel really dizzy and hungover, not having actually drank alcohol the night before

It's got me wondering though, what is my actual risk of death? I've tried using google to find some answers and most of the information is pretty vague. Cardiovascular problems, Heart Attack, and stroke. I've read that Apnea related issues are a leading cause of heart attacks and strokes or death while sleeping. But I'm 28 years old, and doctors have told me I have a healthy heart. Obviously I will be using the ASV again eventually, but my understanding of the health risks in my case are unclear, and I would like to know if anyone here has resources or studies relating to how this can effect me at my age. I have circumstantial questions too, for example,  I spend time camping and backpacking in high altitude areas (5,000ft+) and my understanding is that high altitude can worsen sleep Apnea, so if I sleep at 7,000ft, and drink alcohol am I literally risking death?

Other questions:
Can something as simple as asphyxiation cause death? 
Is heart attack or stroke possible in someone my age?
How does alcohol or marijuana effect central sleep Apnea? 
How do high altitude environments actually effect central sleep Apnea?
If left untreated how long do I have? age 40? age 50? 

All I've really been told by doctors is that I have severe central sleep apnea, it's very rare, and I need the most expensive machine available. then they shoo me out the door and take my money without accepting questions.
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#2
Provided you are getting effective treatment, your risk of health effects should be no higher than anyone else. Keep in mind that central apnea is far different from obstructive sleep apnea and does not put the same pressure on the heart and internal organs. In OSA, the effort to breath through an obstructed airway causes a great deal of stress, while in central apnea, you may become somewhat hypoxic, but don't experience the effects of an obstructed airway, nor do you have normally associated side-effects of obesity, diabetes and other health affects that frequently accompany severe OSA. In any event, I'm not aware of long-term epidemiology studies of a cohort of central apnea affected individuals, so there may not be a good answer to quantify your concerns. Assuming you are in otherwise good health, without current heart problems, I think your life expectancy is the same as any other male of your age. Apply for life insurance, and someone might put a number on it.

We have another member C0mbe who is using ASV and has altitude dependent central apnea. I'm sure he will comment on these concerns.

Asphyxiation is by definition potentially fatal; however you still have a hypercapnic respiratory drive that responds to CO2 buildup. In your case, it may be a delayed reaction, but when your CO2 levels rise, you breath, you just don't get good sleep.

I have better AHI when drinking or using marijuana, but individual responses vary widely, and most people are probably adversely affected. I would think you will find out as you experiment and live a normal social life. Keep in mind that your respiratory drive may not have anything to do with your central nervous system, and the sedative effect of alcohol will not greatly increase obstructive apnea risk for you.

Altitude affects some people like C0mbe adversely. I have near zero AHI above 7000 feet. Your results may vary, so take a trip and find out.

You're going to outlive most of us, and your CA problem is not nearly as rare as you might think. With an incidence of 3-7% of the population, there are millions of you guys out there. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2645248/
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#3
Hi friday88,
WELCOME! to the forum.!
trish6hundred
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#4
(04-17-2017, 01:59 PM)Sleeprider Wrote: Provided you are getting effective treatment, your risk of health effects should be no higher than anyone else.  Keep in mind that central apnea is far different from obstructive sleep apnea and does not put the same pressure on the heart and internal organs.  In OSA, the effort to breath through an obstructed airway causes a great deal of stress, while in central apnea, you may become somewhat hypoxic, but don't experience the effects of an obstructed airway, nor do you have normally associated side-effects of obesity, diabetes and other health affects that frequently accompany severe OSA.   In any event, I'm not aware of long-term epidemiology studies of a cohort of central apnea affected individuals, so there may not be a good answer to quantify your concerns.  Assuming you are in otherwise good health, without current heart problems, I think your life expectancy is the same as any other male of your age.  Apply for life insurance, and someone might put a number on it.

We have another member C0mbe who is using ASV and has altitude dependent central apnea.  I'm sure he will comment on these concerns.

Asphyxiation is by definition potentially fatal; however you still have a hypercapnic respiratory drive that responds to CO2 buildup.  In your case, it may be a delayed reaction, but when your CO2 levels rise, you breath, you just don't get good sleep.

I have better AHI when drinking or using marijuana, but individual responses vary widely, and most people are probably adversely affected.  I would think you will find out as you experiment and live a normal social life.  Keep in mind that your respiratory drive may not have anything to do with your central nervous system, and the sedative effect of alcohol will not greatly increase obstructive apnea risk for you.

Altitude affects some people like C0mbe adversely.  I have near zero AHI above 7000 feet.  Your results may vary, so take a trip and find out.

You're going to outlive most of us, and your CA problem is not nearly as rare as you might think. With an incidence of 3-7% of the population, there are millions of you guys out there. 
Wow I feel like I've just learned so much more than anything I read while trying to research this haha.
 
I didn't realize the physical demand on the body's systems were different for different sleep apneas. I thought the lack of oxygen in general is what caused stress for the heart and respiratory system. When you mention a hypercapnic respiratory drive responding, are you suggesting my brain should always trigger me to breath when it senses elevated CO2 in my blood? Since I already have the issue of my brain not sending the signal to breath, I've wondered if its possible that this "emergency" signal won't be sent, causing my brain to essentially suffocate itself. 

I'll have to keep note of the AHI number while sleeping with alcohol or marijuana once I get my ASV machine back. When drinking I sleep noticeably worse. At least I feel much worse in mornings, and not due to typical hangover sickness. I don't use marijuana often enough to compare it.

(04-17-2017, 03:03 PM)trish6hundred Wrote: Hi friday88,
WELCOME! to the forum.!

Thank you
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#5
Welcome Friday88!

I can speak to altitude, as I am adversely affected by it (and live in Colorado no less!).   There is quite a bit of research regarding CSA and altitude, although they focus primarily on the conversion of OSA to central apnea (which I have).   To learn more, check out http://www.aasmnet.org/jcsm/ViewAbstract.aspx?pid=28368.

My sleep doc has been an excellent resource on this topic, as he treats people who live anywhere from 5280' (downtown denver) to 9000' (frisco), and he has said a number of times how different altitudes affect his patients differently.  He has essentially said that 6000' is the magic number where altitude starts adversely affecting apnea type, and where even non-apnea sufferers may start to experience central apneas.  

From what I can tell, and given that some people like Sleeprider actually improve at altitude, it seems like a persons individual response to high-altitude is a not necessarily predictable. Although altitude is known to worsen apnea in most cases, there certainly are exceptions.  In order to gauge your own individual response while camping you would probably need to take a look at how you feel in the morning and data from any data-capable xpap.  Given that you have been diagnosed with CSA, I certainly wouldn't recommend camping at higher altitudes until you are back on an ASV because a betting man might bet your CSA would be significantly worse.  

I was having trouble micro-managing my AHI between altitudes, and I will say that the ASV has been incredibly effective at any altitude I may stay at, and that includes over 9000'.  The great thing about the ASV machine is that if you have the EPAP range set correctly and leave the pressure support a little more wide open to give the machine room to work it will adjust for severity based on altitude.  And it does. My EPAP needs are the same between altitudes on an ASV, but pressure support is higher for me at higher altitudes, and I have less patient initiated breaths.   I wouldn't worry about camping on an ASV and would enjoy it!  As long as the machine is set right it will adjust for your needs.
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#6
friday88:

You're only 28. You are in the age group where you are at greater risk of dying due to a traffic collision.

As far as your health concerns. Look forward and not backward. Live well; enjoy live; and make good decisions about care and management of known conditions and have wellness screenings along the way.

Life is not a sure thing. No one can know when they will die. So, do your best going forward. I wish you many years of healthy life.

Mongo
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#7
Is the insurance going to be sorted soon? What were the desats during your sleep study, how bad is it?
I would get back to your doctor, I wouldn't minimise your current risk. I think the desat damage would be the same, whether from obstructive or central. The physical straining of obstructive is another level. You are aware you aren't functioning as well as your were. A google search will show the long term damage of desat.

At the very least I would ebay a cms-50f O2 sleep monitor for $50. To see how bad the desats are now. If the Ins. isn't going to happen, I would sell everything and get a s9 adapt ASV for $1300 from secondwind, or perhaps craigs list. The s10 ASV is going for $1800.

This study shows untreated obstructive apnea has a 40% survival rate at 5 years, I really would look into your apnea risk of chronic damage. Although given the length of time you have had it and has been saod by sleeprider, I would think it would be a less total risk than obstructive.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2727690/
figure 3
https://www.ncbi.nlm.nih.gov/pmc/article...figure/F3/
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#8
(04-17-2017, 05:46 PM)ajack Wrote: Is the insurance going to be sorted soon? What were the desats during your sleep study, how bad is it?
I would get back to your doctor, I wouldn't minimise your current risk. I think the desat damage would be the same, whether from obstructive or central. The physical straining of obstructive is another level. You are aware you aren't functioning as well as your were. A google search will show the long term damage of desat.

At the very least I would ebay a cms-50f O2 sleep monitor for $50. To see how bad the desats are now. If the Ins. isn't going to happen, I would sell everything and get a s9 adapt ASV for $1300 from secondwind, or perhaps craigs list. The s10 ASV is going for $1800.

This study shows untreated obstructive apnea has a 40% survival rate at 5 years, I really would look into your apnea risk of chronic damage. Although given the length of time you have had it and has been saod by sleeprider, I would think it would be a less total risk than obstructive.

Insurance should come  in the next couple months. What is a desat? 

Thank you , I will check out those links! If I don't get the insurance soon. I may end up buying a machine second hand, but the doctor made it seem like I needed this special one.
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#9
(04-17-2017, 06:12 PM)friday88 Wrote:
(04-17-2017, 05:46 PM)ajack Wrote: Is the insurance going to be sorted soon? What were the desats during your sleep study, how bad is it?
I would get back to your doctor, I wouldn't minimise your current risk. I think the desat damage would be the same, whether from obstructive or central. The physical straining of obstructive is another level. You are aware you aren't functioning as well as your were. A google search will show the long term damage of desat.

At the very least I would ebay a cms-50f O2 sleep monitor for $50. To see how bad the desats are now. If the Ins. isn't going to happen, I would sell everything and get a s9 adapt ASV for $1300 from secondwind, or perhaps craigs list. The s10 ASV is going for $1800.

This study shows untreated obstructive apnea has a 40% survival rate at 5 years, I really would look into your apnea risk of chronic damage. Although given the length of time you have had it and has been saod by sleeprider, I would think it would be a less total risk than obstructive.

Insurance should come  in the next couple months. What is a desat? 

Thank you , I will check out those links! If I don't get the insurance soon. I may end up buying a machine second hand, but the doctor made it seem like I needed this special one.

Depending on your finances, you could wait a couple of months. you could also get the s9 adapt (ASV), which Resmart say is for centrals, till you get your s10 ASV, but you would check with the doctor first. You could use it now and keep it as a spare or travel VPAP, If you so desired. Personally given you are getting symptoms now, I wouldn't wait another 2 months, but $1300 wouldn't be a deal breaker for me, I don't know your financial situation.
page 27
https://www.resmed.com/us/dam/documents/...lo_eng.pdf

desat, I meant O2 desaturation from the centrals, I would think if the drops are above 85 is a lot better than dropping to 70.
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#10
If you want actual statistics regarding your risk of death from various conditions, the CDC has a page dedicated to health statistics for various conditions. Check out this page: https://www.cdc.gov/nchs/fastats/deaths.htm and browse around.

Also, if you are in the USA, most states have a department of public health which may provide statistics for your state.
                                                                                                                                                                                  
Please organize your SleeyHead screenshots like this.
I'm an epidemiologist, not a medical provider. 
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