Please help--strange symptoms and kind of desperate

[Rach.Eliz]

I'm posting this at 11:30 at night because I am at my wit's end and don't know what to do.

I am having symptoms that literally no other apnea sufferer I've ever met can relate to, and 3 doctors have said they just don't know what to tell me. I'm hoping someone one here might know something.

I started using CPAP therapy 2 years ago. I use an auto-titrating machine (adjusts to my breathing throughout the night) with a pressure range from 9 to 12.

I pursued my diagnosis of sleep apnea because my apnea had gotten so bad that I was ceasing to breathe before I was even properly asleep at night; I would often just be dozing off and then I would wake with a big gasp. It didn't even take getting deep into sleep. I have no idea how I was surviving or ever sleeping. My AHI was 51!

Since getting on the machine I feel more rested during the day and my doctor has been pleased with my AHI number. However, I still have some nights where I suddenly get breathless as I"m dozing off. It happens when I am almost all the way asleep, so I have a hard time believing it is a mental thing. I can be relaxed and feeling fine breathing with the machine as I"m getting sleepy, but every time I drift off, I wake up with a large breath and the feeling of adrenaline sort of spreading through my body like I really, really need to breathe.

It doesn't happen every night. But when it does happen, it will wake me up every few minutes for an hour or two or three. It is like being tortured. Because my AHI numbers are not high, no doctor thinks that there is anything going on with me that's worth looking into--even though, on nights when I have experienced this, most of my events are actually happening during that period when I'm going to sleep, and then not for the rest of the night (making the overall AHI for the whole night fairly low, but very high during the going-to-sleep portion). I've checked on Sleepyhead and most of the events on these bad nights are flagged as "RERAs", with a few hypopneas, and occasionally a clear airway.

Has anyone else ever experienced this? My doctors have all told me that my auto-adjusting machine should be catching all my events and they don't know what else to say. Meanwhile, I have nights where it takes 3 hours to get to sleep for no real reason and then I have to face a long commute and work the next day.

Can anybody suggest what might be going on? Because I suffer from anxiety I am tempted to believe this is all in my head, or is psycho-somatic, but how could it be in my head if it happens when I am almost all the way asleep and not be happening when I am awake and fully conscious?

Any thoughts would be helpful. Thank you.

RDavis

[Rach.Eliz]

I should add: I went back and looked at my data again (it's been awhile since I checked it myself) and it does look like a lot of the events when I'm falling asleep are hypopneas. There are also a fair amount of clear airway events.

Have you ever heard of anyone else having hypopneas primarily when first going into sleep that actually prevent you from getting into sleep WHILE using PAP therapy?

[kteague]

Are you using a ramp feature prior to your pressure range? If so, what is your pressure and length of time, and do you ever turn it off and back on to start over? If not, please ignore.

I've read on here that a few clear airway events are not unusual when in transition between being asleep and awake. If there are none of those during the rest of the night when asleep, then they are probably nothing to worry about. As far as hypopneas as soon as you begin dozing, I would have to wonder if a slight increase on the lower end of your pressure range might prevent those.

[Meeseeks]

Do you have the flex feature on? The pressure is supposed to decrease as you exhale, I could never get used to it.

[papzombie]

How frequent were the RERAs during that 1-3 hour period ? Can you post SH data here ? How unstable is the flow rate during that period ?
Could that be that there were obstructed airway events which wake you up very often, but are not detected by the xPAP machine as RERA (e.g. events are < 10 seconds ) ?

[ChicagoGranny]

literally no other apnea sufferer I've ever met can relate to

The symptoms you describe are not at all unusual.

my AHI numbers are not high

What is "not high"? If you want good help, it is best to be specific. We've had people who thought AHI of 2.0 was too high and others who thought AHI of 11.0 was "not high".

For a night where you had this problem, what was the AI and what was the HI? For the AI, what portion were obstructive and what were open airway?

Are you using Sleepyhead to look at the wave forms and pressure and leak lines during the time you experience the problem?

I suffer from anxiety

This may go away when your CPAP therapy is working well and you are getting enough sleep to overcome your state of continuous sleep deprivation.

Let's make sure your therapy is working well. Use Sleepyhead to evaluate it - don't depend on doctors or other medical professionals to evaluate your therapy. You are in the best position to evaluate it.

It's best to join and fill out your equipment profile - https://www.cpaptalk.com/ucp.php?i=prof ... pment_info . The more that members know about your condition and your CPAP therapy, the better they will be able to help you. Use a screen name that protects your privacy.

In the meantime, stay calm and remain optimistic that CPAP therapy will allow you to become a "new you". It's done this for millions of people.

[SleepyBobR]

I had exactly what you describe and it was very distressing. In my case it was the combination of central sleep onset apneas (which are normal) and anxiety (which is not). Together they created a situation where I kept waking up over and over again, just as I was falling asleep, with a rush of adrenaline and a feeling of doom. Harmless really, but it was bad enough to make me fear going to bed. Once I realized what was happening and that the onset apneas were normal, I was able to overcome the anxiety caused by them. It took a while but that's what it was. Your condition could be the same thing. If so, benzos or Z-drugs (like Ambien) will get you over the hump and into sleep but they come with the risk of dependancy. I avoided them for that reason.

[Rach.Eliz]

I'm so sorry it took me this long to respond! I started a new job and got ready for the holidays all at the same time

I have a complete response and answer to questions ready to go, but I can't figure out how to post data from my SleepyHead software for you all to look at. Can someone help? I have a registered account here now.

Rach.Eliz

[Janknitz]

The other day I sat down to watch TV and woke up with exactly those symptoms. I didn't have my CPAP on (because I wasn't planning on falling asleep, though should have expected it since I stayed up way too late the night before).

So if your data doesn't show anything much, I second the suggestion to increase your starting pressure--it may be just a hair too low at the beginning to catch that first apnea. CPAP's don't respond quickly, and it just may need to play catch up at the current setting.

[ChicagoGranny]

I can't figure out how to post data from my SleepyHead software for you all to look at. Can someone help?

viewtopic/t88983/Pugsys-PointersSleepyH ... Hints.html

Ask detailed questions in this thread if you need additional help.

[OkyDoky]

This site will help you learn how to organize your Sleepyhead charts, take a screen shot, and use Imgur to post. There will be 3 pages, so be sure and click on the links at the bottom of the pages. https://sleep.tnet.com/resources/sleepyhead/shorganize

[Breathingfast]

This has happened to me in the past. If you breathe too fast as you are drifting off to sleep, due to anxiety, or if you are breathing too hard while trying to "push" against the high pressure, you will get too much oxygen in your blood and your breathing will stop as you fall asleep. When breathing stops, the amount of oxygen in the blood will begin to drop and you will start breathing again. This is a similar reason why people have a person who is hyperventilating breath into a paper bag (to increase the carbon dioxide into the blood). However, as you stop breathing, your machine will begin to "puff" air into your mask which may wake you up (like a clear apnea). This cycle can happen over and over for hours. You breathe to hard or fast then you drift off to sleep but on the edge of sleep, you stop breathing and the CPAP wakes you up. This cycle happened to me when I lost a lot of weight. I had to lower the pressure while going to sleep so I didn't need to fight so hard against high pressure. If you don't stop breathing for a certain number of seconds, it won't show up as an apnea even though it might wake you up.

[Rach.Eliz]

Thanks for the responses...I have my Sleepyhead screen shots ready to go, but I can't figure out how to post them in the comments. It tells me that I have to "register or remove" the images when I try. I visited the link to the page of Pugsy's Pointers links, but they seem to be about understanding Sleepyhead software. Is there a page that simply tells you how to load an image into the comments here? The other link provided in the earlier comments only gives guidance up through taking a screen shot. Thanks!

[ChicagoGranny]

It tells me that I have to "register or remove" the images when I try.

That sound like you weren't logged in. Make sure to log in.

Then, set up an account at http://imgur.com/ and upload the images. Then post the link to the images here. We really don't need to see the images in this forum. We can use the links to view them in your imgur account.

[OkyDoky]

Thanks for the responses...I have my Sleepyhead screen shots ready to go, but I can't figure out how to post them in the comments. It tells me that I have to "register or remove" the images when I try. I visited the link to the page of Pugsy's Pointers links, but they seem to be about understanding Sleepyhead software. Is there a page that simply tells you how to load an image into the comments here? The other link provided in the earlier comments only gives guidance up through taking a screen shot. Thanks!

On the page about the screen shot at the bottom you have to click on the next link. Here is the page on Imgur.
https://sleep.tnet.com/reference/tips/imgur