Feeling discouraged, need advice

[doom969]

Hello everyone.

So here is a condensed version of my story :

I have been diagnosed with severe sleep apnea, my ahi where about 104 on my back, which is about 50% of the night and 64 the rest of the time.
(oxygenation got down to 68-70, pulse up to 110(max), longest pauses where 70secs, with an average of 21 secs)
I had asked myself to get a sleep study because I suspected I had it.
Doctor said I was quite a severe case.

I now have had my CPAP machine for 8 nights, a philips dreamstation apap.
I have slept with it all night, everynight since.

Trouble is I don't feel well rested of better that much. I seem to think a bit more clearly but that is about it.
I feel tired in the morning, and have even woken up with headaches a couple of days.

for the first weak my ahi where an average of 12-14 with the most in the early 20's and lows at 10.

I called back my therapist, explained the problem, and she shifted my machine to constant pressure of 9, yesterday. ( with a 20min ramp, 4 to 9)

I've woken up this morning, feeling maybe marginally better, still tired.
Now the therapist told me it is useless to do more adjusting for the moment, we should let at least a week go by between changes.
She also told me that in cases severe as myself, sometimes it doesn't get really better than this.

I had talked with a couple other persons using cpap, and they all told me they felt so energized after, even the doc who diagnosed me(not the therapist) said it would be life changing.

So I am feeling really disappointed that I don't really see a change, I expected to feel good, well rested, no headaches in the am, etc Not maybe marginally a bit better.

Like I said I slept all night every night with the machine for 8 days now.

I am at the point where I wonder if I'll continue.. what is the point of dealing with the machine and hose, and all the hassle for that ? If I feel kinda the same ?

I mean I really wanted to see an amelioration, but it kinda looks like it wont be the case for me.
I am tired, short tempered, headaches, everything, I really expected to get my life back.
(been like that for a couple years, yeah I'm a dummy, it took way to long to realise what was happening and why).

Also, I wake in the morning with the mouth and throat very dry.

Anything I should try ? I tried and kept it concise but feel free to ask any question..
I joined an oscar summary for clarity.
Also, sorry for my poor English, it isn't my main language.

I am really looking for any and all advice.
Is it normal i cant really tell the difference ?
Is it normal to be unable to go below 8-9 AHI at best ?

thanks a lot

Dom

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[LSAT]

First of all, your pressures are too low...Your minimum pressure is 4 ..it should be 8-9. Your maximum pressure is now 9 when it should be 15+. With dry mouth, I'm guessing that you are a mouth breather. I would try turning off the ramp. What mask are you using?

[alexander]

I’m sending good vibes your way.

I don’t have much to help with other than it may take some time before things start to get better. The good people on this forum might help you get even better AHI numbers, but you should be proud of the fact that you’ve gotten them a lot lower than your untreated AHI.

[Pugsy]

Welcome to the forum.

When you were using auto mode the pressure range was 4 minimum and max of 16....your AHI was too high because of the low starting point. It simply takes too long to get from 4 cm to where you need to be to hold the airway open optimally.

Now with the recent change to 9 cm fixed...the machine can't try to increase the pressure to prevent the airway from collapsing and the 9 cm fixed setting is too low.

9 cm should have been the minimum when you were in auto mode and you would have stood a better chance of having a lower AHI and feeling better.

I don't know where you are but your tech is an idiot.

[Dog Slobber]

I would set back to APAP

Settings 9-20
Then post graphs and start dealing in settings

[doom969]

Thanks everyone for the answers,
So the mask I am using is a nose pillow ? I think, is soft thing with two knobs going into the nose
So best thing would be trying 9-16 or 9-20 in apap mode ?
and see what it does ?

Anything else I should knowm any advice ?
I really hope I see results, I am so f.. fed up of feeling like this.

Thanks a bunch everyone, really appreciate the help.
Also, waht settings of hose and water heating seems to be the best ? is there a consensus ?

[Pugsy]

Humidity and hose air temp are personal choice. Whatever feels good to you.

9 min and 16 max would probably be okay...when you were in auto mode the highest it ever went to was just a little below 15 but it wouldn't hurt anything to set the max to 20. If the machine doesn't need or want to go there it won't.

[doom969]

Thanks again,
one more question, using higher pressure, it becomes kinda harder to exhale, I know the dreamstation has a setting for that called a-flex, can I play a little with it to find what feels good, or is it dangerous ?

[Pugsy]

By all means...set the Flex to the setting of 3 (as high as it will go) and see if that is enough relief during exhale.
No danger to messing with it at all. It's a comfort feature.

[doom969]

thank you, and pugs rock !
how old is yours ?
I have a boy pug named merlin, 4 and a half, and he is the best dog ever.

[Pugsy]

I have had pugs for over 35 years....right now my current little pug is Lucy...she's 6 and a fawn.
The black pug in my avatar is Sarge. We lost him back in Feb to a heart problem. He was only 9.
I have other dogs and cats too...but pugs hold a special place in my heart.

[HuffDog]

I am at the point where I wonder if I'll continue.. what is the point of dealing with the machine and hose, and all the hassle for that ? If I feel kinda the same ?

While I cant top the technical advice given here by the veteran CPAP-ERS, I'd like to offer some encouragement.

I'm merely 2 weeks into my CPAP journey. The first 5 nights were MISERABLE. My biggest problem was getting used to breathing against the air pressure. But I've finally settled into it a bit and am getting used to having this alien stuck to my face all night.

My sleep isn't perfect by any means, but I'm getting there by making a few tweaks to my therapy along the way. My mood is better, as my depression is lifting. I'm not scared to drive my car for fear of crashing it. I can laugh and have fun with friends rather than being tired and miserable most of the time. And those are just the tip of the iceberg.

My adjustment period was relatively short I admit, but you haven't been at this very long either. Your AHI has gone down dramatically. Be persistent and your body will thank you. Every night you wear CPAP you're drastically reducing your chances of stroke, heart attack, diabetes, depression...the list goes on.

You dont know me from a hole in the wall. But know that if you stick with this, your life WILL change for the better.

[Miss Emerita]

I want to echo HuffDog. First, you are doing a wonderful thing for your long-term health, and that’s a huge reason right there to stick with it. Second, while some people feel an immediate short-term boost, the majority of us find that changes to mood, energy, and cognition come more gradually. Third, with the help of the experts here, you will be getting your settings dialed in, and you will be seeing your AHI going down, which will help you feel better.

So use those new settings and post a “daily” chart. Be sure to turn off the calendar and pie chart so key information will be visible, and stack your charts like so:

Events
Flow rate
Pressure
Leaks
Snores.

[TropicalDiver]

A few observations:
a) While every case is different, the fact that your case was severe does not doom you to mediocre treatment results.
b) Even if you feel like the treatment is not completely effective based on how you feel sleep-wise, you are likely still incurring health benefits.
c) Dialing in your treatment is key. This is machine settings, often mask fit/choice, and sometimes other sleep related items. And it does take some trial and error -- I promise it gets better.

So, a bit of context about my case: My gastro suggested I might have apnea and suggested a sleep study. My study was a split-study done in a sleep lab. I had an AHI of 86 (best case -- all non-REM, all sleeping on my side) and was desating to 81. They then used PAP for the rest of the study. I felt like shit that morning -- worse than my then normal.

I ended up needing (and getting) a bi-level machine. My initial settings were 17 min, 25 max. I worked through a bunch of issues: super dry mouth, falling asleep prior to having mask secured, mask leaks, very sore chest, etc. I have changed pressures, ramps, humidity, hose temp, masks, bed pillows, and added another mask strap.

At this point: My AHI is less than 2 and, other than an odd night here and there, I feel much much better than prior to treatment.

Daytime sleepiness is hugely improved and energy level is way up. And I feel truly rested each morning. That is worth the hassle!

One last thought: Once you have things figured out, the hassles really aren't that big a deal. What seems hard will become easy if things are dialed in.

This is my daily routine:
At night: Fill humidifier, insert into machine. Sit on the side of the bed. Attach the mask to my face (hose is disconnected at the quick connect.). Lay down. Attach hose and take two deep breaths (auto on). Sleep.
In the morning: Wake up. Take off mask (machine has auto off). Wipe mask with a wipe to clean it (a bit). Remove humidifier and dump and residual water into sink. Leave open to air dry.

[kteague]

I have been diagnosed with severe sleep apnea, my ahi where about 104 on my back, which is about 50% of the night and 64 the rest of the time.

Unless you have a need to back sleep, if managing events becomes a problem, taking steps to stay off your back may be a low-effort way to mitigate your events.

I have slept with it all night, everynight since.

You're off to a great start! Not everyone can say that.

Trouble is I don't feel well rested of better that much. I seem to think a bit more clearly but that is about it. I feel tired in the morning, and have even woken up with headaches a couple of days.

It often takes a period of recovery before results are very obvious.

for the first weak my ahi where an average of 12-14 with the most in the early 20's and lows at 10.

Which could explain some of your residual symptoms. It is consistent use of EFFECTIVE treatment that makes an expectation of symptom improvement reasonable.

Now the therapist told me it is useless to do more adjusting for the moment, we should let at least a week go by between changes.

Yes, in general it is recommended to let things settle in a bit before making changes. However, if the machine data shows an obvious lack of therapeutic treatment, there is no need to prolong the misery. I see great value in having some of the data gurus here take a look at your machine data, as we cannot know how learned the therapist might or might not be. You'd be surpised how little some of them know about the details of this treatment.

She also told me that in cases severe as myself, sometimes it doesn't get really better than this... I am at the point where I wonder if I'll continue..

She could have kept that remark to herself as you have only scratched the surface of the potential for this treatment to work better for you. I could understand her saying that if all possible efforts had been exhausted to no avail. A 1 digit change in pressure is a minimal effort thusfar. Do not allow that negativism to discourage you from pursuing your personal best. Do keep in mind that how you feel is but one piece of the puzzle. The severity of your condition means you need to work toward effective treatment no matter how many detractors. The consequences to your health for not doing so could be serious.

Also, sorry for my poor English, it isn't my main language.

Would have never known - you express yourself quite clearly.

Is it normal to be unable to go below 8-9 AHI at best ?

No. That would be an exception rather than a rule. Expect better.

Have you read the posts for newbies at the top of the main page? They contain some really helpful information. Good luck going forward.