I'm new. Dying of exhaustion. Just got a machine - here's my story.

[michaelba72]

Great board and members, thanks for all the great information.

I feel like I just need to articulate my story for my own sake. Anyone with any insight, you are welcome to chime in. Thanks.

I was on Ambien for a couple of years, and then last October I started waking up and not feeling rested, and then my exhaustion would slowly ramp up until I was dying in the late evening. After a few weeks this became incredible chest pain along with the exhaustion. I figured I needed to get off the Ambien, so I did, and my doctor gave me Trazadone to help get off the Ambien. Was painful but after a few days I was groggy, but not dying of exhaustion, so I figured my problem was due to the Ambien. Felt pretty good. About a month later, while on the Trazadone, the exhaustion came back. I spent all of January waking up ok but not quite rested, and then slowly going to hell until I went to sleep at night and then it would start over again in the morning. I got back on the Ambien and tried a few other drugs. Got a full blood workup from my doctor and everything was normal.

I did a sleep study which said I had an AHI of 8.5 which is considered mild sleep apnea. Set an appointment to see the sleep specialist but it was 3 weeks away and I was dying. So I got off all sleeping pills which was 3 days of pain but when the clouds parted my exhaustion was basically gone. I cancelled the appointment with the specialist. I went 6 months feeling basically ok. I sleep a full night. Never super rested, but livable.

Last week the exhaustion came back. Exactly the same as before, and I'm on no pills. I'm still not as bad as my worst point but I can see where this is going. Couldn't get an appointment with the sleep specialist for another 3 weeks and I'm desperate so I bought a Respironics Dreamstation and tried it out for the first time last night. My pressure settings were on Auto with a range of 4-20 which I'm now reading is too wide. I didn't sleep that well and I don't really feel any better today. I analyzed the data with the software that comes with it, and also with SleepyHead.

Slept 7 hours
Average pressure 7.34
AHI 13.02

Clear Apneas: 43
Obstr. Apneas: 4
Hypopneas: 47

Which basically means I stopped breathing 43 times but my throat only closed as an obstruction 4 times? This seems like a lot to me but I don't really know much about all this stuff. Would a higher pressure 'break through' the breathing stops? I don't know that this could even be causing my exhaustion symptoms, but like I said I'm out of ideas and I have another 2 weeks until I can see the sleep specialist. Sorry this is long but thanks for reading.

[justMongo]

Slept 7 hours
Average pressure 7.34
AHI 13.02

Clear Apneas: 43
Obstr. Apneas: 4
Hypopneas: 47

Which basically means I stopped breathing 43 times but my throat only closed as an obstruction 4 times? This seems like a lot to me but I don't really know much about all this stuff. Would a higher pressure 'break through' the breathing stops? I don't know that this could even be causing my exhaustion symptoms, but like I said I'm out of ideas and I have another 2 weeks until I can see the sleep specialist. Sorry this is long but thanks for reading.

Not with that machine. In fact, pressure may induce more clear airway apnea. Now, the hypopneas, will likely respond to a higher minimum pressure setting. The machine you have is not meant to treat CA (central or clear airway apnea); it will not raise pressure in response to a CA.

Some people, at the beginning of therapy have pressure induced CA's that resolve. One question that might be answered by using the Sleepyhead software is: What are the durations of these CA's? If short, desaturation may not be an issue; but sleep quality would still be disturbed.

I think it unlikely you can resolve the issue until you see your specialist; and you may need to be on a different type of machine that will react on a breath by breath basis to keep you ventilated.

[trish6hundred]

Hi michaelba72,
WELCOME! to the forum.!
Good luck to you as you start your CPAP journey.

[kwhenrykerr]

My limited understanding is that when my brain thinks that I am being strangled or choking it gets upset. A swift kick in the backside is in order to fix things. If this happened 94 times a night I might not feel rested and refreshed the next day.

Clear Apneas: 43
Obstr. Apneas: 4
Hypopneas: 47
--------------------
Total 94


If I have this all messed up somebody strighten me out please.

[michaelba72]

justMongo - Thanks for the good information. I will keep this in mind. As I understand it, the airflow has to be interrupted for at least 10 seconds for it do record a clear airway apnea. It's not clear to me where the duration would be in SleepyHead but I will keep looking at it.

kwhenrykerr - Right, that's kind of my understanding too. Over 7+ hours of sleep, 94 events / 7.4 hours of sleep = AHI of around 13. Which is still considered mild sleep apnea I believe. My symptoms don't feel mild but t hey could be building up over days. Although 'classic' sleep apnea is when your throat relaxes and closes your airway and you choke yourself awake, which it appears I don't have much of.

[Sleeprider]

Michael, there are about 15% of users that develop CPAP induced complex apnea. The number of CA events you are having suggest you MIGHT be one of them. There is a solution that resolves all this but I think we should give this more time before suggesting ASV therapy.

[PoolQ]

hover the mouse over the CA flag and it will show you a number, that is how long it lasted in seconds

[michaelba72]

Do you mean the number in brackets? ()

From the documentation it says :

The number in (brackets) after individual events is used for alignment purposes, to make the events match up to the flow rate waveform.

It may or may not be related to duration, so I left it in, in the hopes someone else might figure it out.

Or am I looking in the wrong place..?

hover the mouse over the CA flag and it will show you a number, that is how long it lasted in seconds

[kwhenrykerr]

" Although 'classic' sleep apnea is when your throat relaxes and closes your airway and you choke yourself awake, which it appears I don't have much of. "

My question would be if you were not awake enough to remember but awake enough to not be refreshed how would you know ?

Using Sleepyhead and tracking how you feel the next day can help. It is a lot to learn and try to put in some manner that makes sense to yourself. Figuring out what works for you is worth the effort.

There are lots of different treatments that work, just read around this forum. Trying out things and keeping what works until something better comes along has worked for me. I still am looking for the magic fix, it is like going fishing. The challenge that are you going to catch a cure or does hope say you are going to catch "The Cure". The big one always gets away but we keep on fishing.

[cate1898]

Welcome to the forum michaelba72, glad you found us!

Not everyone actually gets to feel better the first night after CPAP. I myself was diagnosed in the 'mild' sleep apnea category, although during REM my numbers go quite high. I didn't notice much difference after starting therapy for days and even then I only noticed that when I awoke in the morning, I wasn't as groggy as I used to be and the morning headaches were less severe. After having my CPAP fine tuned and pressure raised it still took me a few months to be almost rid of the headaches. I say almost because I still wake with them sometimes. I now believe there are other factors contributing to this. Also I went from being a loud snorer to not storing at all. A welcome change I can assure you, specially for my hubby!

So, CPAP is not an instant cure, but will work given time, effort, trial and error and continued use. Keep at it and keep us posted!