Six months of misery; what should I tell my Dr.?

[EncryptedSleep]

Hello all,

Was referred here from another CPAP site to look for advice. Here is a summary:

My sleep study was last June, finally got around to doing it after being told for years that I stop breathing when I sleep and never, ever feel refreshed after sleeping. Classic symptoms and sure enough I was diagnosed with apnea. In my case it was called "Mild". I don't have my results with me but can produce any statistic if needed as I asked for a hard copy of it.

My first machine was something generic, dont even remember what it was but it had no data retention at all. Dont recall what the mask was but I had them both replaced within a month of starting, to a Resmed S9 Elite and the Micro Mirage mask. I hated the mask, it was actually painful right under my nose no matter how I adjusted it. I struggled through it for weeks always like this:

- Take melatonin, feel tried, go to bed.
- Thrash about with the mask on for about an hour, take it off, out it back on about an hour later, lather rinse and repeat pretty much all night.
- Wake up feeling like death warmed over, resist urge to throw machine out the window.

This went on for a while until I tried another mask, the nasal pillows. These seemed promising at first, although I only recall ONE night that I managed to keep the mask on the entire night. One night out of six months is....pretty pathetic.

Anyhoo, I had another followup and the Dr. reccomended a different machine, another Resmed that changes pressure based on my breathing (the model escapes me at the moment but it's Auto -something)

I noticed no difference at all, it's still the same drill; feel tried, try to sleep, thrash around, take off mask, put it back on etc.

During this time I have also been consulting with my family Dr. who gave me some samples of Ambien. I might also note that I have insomnia, recently divorced, seperated from my kids, am on call once a month for my job so it is probably not helping that all these external factors are heavy.

Anyway, the Ambian might as well have been sugar pills, I didnt notice a thing from taking them. So she gave me a scrip for Amitripti-seomthing or other. That actually makes me sleepy, but not quite sleepy enough because I still can never get to sleep with the mask on.

I have another followup with my Sleep Studdy Dr in about a week. I want to make sure I convey the needed information the best way that I can, so far this is what I have:

- I know all the little tricks and am doing them: no caffine after noon, no stimulating activity right before bed, only sleep in the bed (i.e. no watching t.v) etc

- The pills I have are actually making me sleepy, but I still have a very hard time falling asleep. Right about the time I start drifting into sleep I am jolted awake, almost violently. It's like my body does not WANT me to sleep, even tho I desperately need it. I should note that before this therapy falling asleep was VERY easy for me , in fact they noted that during my sleep study. Falling asleep was always easy, it was STAYING asleep that was not possible. Now I am experiencing pretty much the opposite; cannot fall asleep at all with the mask on and if I do I wake up again almost right away.

- Sometimes I have a hard time breathing with the mask on, even after adjusting the pressure from as low as 6 to as high as 10. Now I am on the auto which starts at 7 but it still feels the same to me. Having the mask on convinces my brain that it is trying to strangle me.

Is there any other information I should gather to prepare for this? After six months of this hellacious experience I really want to make sure I put forward as much detail as I can. Oh, I am 43 and not overweight. If that matters.

TIA

[kempo]

When I first started using my apap the starting pressure was 8. I, like you, felt like I was suffocating. I bumped up the starting pressure a little every night until it felt comfortable to breath. My starting pressure is now 9.4.

[snnnark]

Did you get your software as you asked? viewtopic/t57830/viewtopic.php?f=1&t=53 ... 31#p502131

If so can you tell us what sort of results you are getting i.e AHI, leaks, etc.

[EncryptedSleep]

Did you get your software as you asked? viewtopic/t57830/viewtopic.php?f=1&t=53 ... 31#p502131

If so can you tell us what sort of results you are getting i.e AHI, leaks, etc.

I do have the software, but I have to wonder: since I never (ever) sleep with the mask on will the results be helpful at all?

Not knowing much about it I did take a peek and when I only have the mask on for an hour or so and am not even sleeping, it's mostly blank.

[Julie]

Have you ever tried a full face mask like the Quattro, Hybrid or UltraMirage? The difference is that because your mouth is also covered along with your nose, you won't lose the 'good' cpap air out of your mouth if it opens when you're asleep, as it does for so many of us. You're not getting treated at all when that happens and if you do a forum search on 'taping', you'll see a way to test the theory for next to nothing (couple of nights should give you a hint) and you'll know whether to try the masks instead of the nasal one you're using.

[beachgirlhp]

Have you tried wearing your mask while you are awake? Sometimes it helps LOADS if you just wear your mask while you are doing things around the house, watching tv, vacuuming, whatever. It helps your body get acclimated to having the apparatus on your face, and it makes it more comfortable when you go to bed. On the other hand, you may want to just try a different mask. It takes some patients 4-6 mask switches before they find the perfect one.

[robysue]

EncryptedSleep,

I bid you a sad welcome to the CPAP-induced insomnia club.

You write:

I have another followup with my Sleep Studdy Dr in about a week. I want to make sure I convey the needed information the best way that I can, so far this is what I have:

- I know all the little tricks and am doing them: no caffine after noon, no stimulating activity right before bed, only sleep in the bed (i.e. no watching t.v) etc

- The pills I have are actually making me sleepy, but I still have a very hard time falling asleep. Right about the time I start drifting into sleep I am jolted awake, almost violently. It's like my body does not WANT me to sleep, even tho I desperately need it. I should note that before this therapy falling asleep was VERY easy for me , in fact they noted that during my sleep study. Falling asleep was always easy, it was STAYING asleep that was not possible. Now I am experiencing pretty much the opposite; cannot fall asleep at all with the mask on and if I do I wake up again almost right away.

Be prepared to talk at length to the sleep doctor about all aspects of your insomnia: The fact that you couldn't stay asleep both before CPAP and with CPAP. The fact that with CPAP you can't fall asleep easily even with appropriate medication and practicing good sleep hygiene. The fact that there's a lot of external stress in your life that is undoubtably adding to the insomnia problems. Write everything you can think of concerning the insomnia down on a piece of paper and make one copy for your records and give the other copy to the sleep doctor for his/her records. Use it to jog your memory when you are talking with the doctor.

You also write:

- Sometimes I have a hard time breathing with the mask on, even after adjusting the pressure from as low as 6 to as high as 10. Now I am on the auto which starts at 7 but it still feels the same to me. Having the mask on convinces my brain that it is trying to strangle me.

<and>
I struggled through it for weeks always like this:

- Take melatonin, feel tried, go to bed.
- Thrash about with the mask on for about an hour, take it off, out it back on about an hour later, lather rinse and repeat pretty much all night.
- Wake up feeling like death warmed over, resist urge to throw machine out the window.

This went on for a while until I tried another mask, the nasal pillows. These seemed promising at first, although I only recall ONE night that I managed to keep the mask on the entire night. One night out of six months is....pretty pathetic.

Again, all of this should be reported to the sleep doctor. Again, write everything that has been a struggle down on paper and make a copy for your files and give a copy to your doctor. Document how/why you believe you were (are?) taking the mask off. Document how the pressure makes you feel when you first turn the machine on. [Can't breathe? Feel like choking? Or do you feel like you're being forced to breath too much?] Document how you feel when you first get up in the morning. Document how you feel as the day progresses---do you eventually start to feel more awake and more alive or do you feel like death warmed over all day long until it's time for bed and the cycle to start over?

Write down the detailed information about exactly which masks you've tried and what was really bad about each and what was marginally acceptable.

Write down your impressions of how you feel at the different pressures that you've tried---if the answer is "can't tell any difference between 6 and 10cm" that's important! If running at a fixed pressure makes you feel different than running at an auto range, that's important! Do you use a ramp? Does it help or not? That's important.

And write down your own impressions of how you felt during the daytime BEFORE CPAP and you are now feeling during the daytime USING CPAP as well as what's going on at night.

Literally write down EVERYTHING you can think of that might conceivably be part of the problem you are having adjusting to CPAP.

Is there any other information I should gather to prepare for this? After six months of this hellacious experience I really want to make sure I put forward as much detail as I can. Oh, I am 43 and not overweight. If that matters.

TIA

I know some of what you're going through: I'm 42, 5'1", and weigh only 108lbs. Nobody's idea of overweight. I've had my own tough time adjusting (still haven't made it really), but the most useful follow-up appointment I had with my doctor's PA was an early one where I brought in ten handwritten pages of information concerning what was NOT working during my first three weeks or so of CPAP. A lot of positive ideas for me to try came out of that meeting. We (as in I, my PA, and my sleep doctor) have not yet managed to exhaust the whole list of potential ideas that came out of that meeting yet.

So my advice is write EVERYTING down, make a copy for the doctor to keep, and prioritize what you want to address after you have a detailed list of everything that's made the last six months a "hellacious experience" for you.

Good luck!

[Tired Linda]

Hi EncryptedSleep,
It would be most helpful if you could take a minute and go to the top left of the screen and click on User Control Panel. There you can enter your equipment, in words please (not the pics), and it will show up every time you post. That way, people will know exactly what kind of equipment you are using and it makes it easier to offer suggestions.

L

[TerryB]

I may get some disagreement from this statement, BUT, if you feel that you are being suffocated when you are just laying there trying to breathe normally, then you are being suffocated by a machine pressure setting which is too low. There is one other issue besides those mentioned above which is the machine filters. If you have been running the machine for 6 months without changing/cleaning filters that will probably effect the air flow rate. You must have sufficient air flow and pressure to allow you to breathe without feeling the system is limiting your air flow. Generally people feel like the exhalation is too hard. You'll feel like the rig is inflating you if settings are right. You'll feel like a struggle to exhale until suddenly you feel like that sensation disappears and you wonder whether the machine shut down because now exhalation is easy too.

Good Luck.
TerryB

[SnoozyQ]

I agree--take notes! In the beginning, I felt like my Dr. was going to think I was a nutcase if I came in with a LIST of what was wrong. I was amazed when she asked to keep my list. And I'm glad she did bc there are things I simply forget to pay attention to, bc I'm focused on something else (...my memory sucks ). They don't know what's going on unless you tell them. There's no such thing as too much information; what you may find to be insignificant may be a key point that needs to be addressed. For example, I didn't recall when I started taking a particular medicine when Neuro. asked me...I didn't think it was very important bc in my mind "that's not the problem". But after looking in my records, I started taking this medication about the time I found myself desperate for sleep and having more noticeable issues. I had a 'DOH!' moment.....and we're looking into it.

When I read your post, I had to make sure that I didn't write it....LOL. You are not alone.

[EncryptedSleep]

Thanks for all the tips, I moved my followup appt. since I seem to be in a holding pattern anyway.

Last couple nights I experimented; tried to sleep without the mask at all. And I STILL thrashed all night and got no sleep. So something else is going on here, think I have insomnia and anxiety on top of the APNEA.

[SnoozyQ]

Actually, I think apnea can present itself in the form of insomnia....great huh? And anxiety certainly contributes to insomnia....ask me how I know. LOL

Good luck at the new appt.

[KimberlyM]

Thanks for all the tips, I moved my followup appt. since I seem to be in a holding pattern anyway.

Last couple nights I experimented; tried to sleep without the mask at all. And I STILL thrashed all night and got no sleep. So something else is going on here, think I have insomnia and anxiety on top of the APNEA.

The apnea would cause you to thrash around when you tried to sleep without the mask. I only slept 110 minutes in my first sleep study and had 70 arousals in that time. The arousals are caused by the apnea (your body "wakes" you to breathe) and this causes sleep fragmentation so you don't go through your sleep cycle normally. I never reached REM sleep in the first study.

[EncryptedSleep]

Thanks for all the tips, I moved my followup appt. since I seem to be in a holding pattern anyway.

Last couple nights I experimented; tried to sleep without the mask at all. And I STILL thrashed all night and got no sleep. So something else is going on here, think I have insomnia and anxiety on top of the APNEA.

The apnea would cause you to thrash around when you tried to sleep without the mask. I only slept 110 minutes in my first sleep study and had 70 arousals in that time. The arousals are caused by the apnea (your body "wakes" you to breathe) and this causes sleep fragmentation so you don't go through your sleep cycle normally. I never reached REM sleep in the first study.

Right, I understand all that. My point is, up until about a year ago (which would be six months before the study) I always fell asleep right away, but did not stay asleep. Recently I can not get to sleep at all. So something is different.