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Losing the will to fight
#1
Losing the will to fight
Hopefully the generous folk on this forum can help me treat this awful problem as it’s starting to take my will to fight. I feel like I’m just surviving day to day instead of truly living.
 
I purchased a Resmed airsense 10 autoset on amazon and also an airfit P10 nasal pillow CPAP mask. I’ve now been using the machine a few days and it’s been a real struggle. I wake up just as often as before I had the machine and feel just as fatigued.
 
Below I will try to articulate what has happened with each night of treatment so far.
 
Night one:
Lot of anxiety due to how desperate I am to successfully treat this debilitating issue. As a result I lay wide awake in bed for most of the night, I slept about 4 hours. On the plus side, I was very comfortable with the mask and the pressure. Still woke up regularly just like before getting a PAP machine. I hardly ever sleep more than 2 hours without fully waking up and having to nod off again.
 
Night two:
On the second night I woke up at around 01:30. My pressure shot up shortly afterwards from a little over 8 up to about 12. As this was only my second night I found this uncomfortable. I think this was in response to suddenly getting leaks from my mask. I tried adjusting the mask but the leaks and uncomfortable pressure persisted so I stopped treatment for the night.
 
I’m pretty confident I remember two times when I woke up this night. The first time was around 11:45 and looking at sleepyhead it says I had a central flag near then. The second time was the above mentioned 01:30 incident with the leaks and pressure increase. However, I’m pretty sure that didn’t start to happen until I had woken up and moved in bed. Looking at sleepyhead I seem to have had a central event and a hypopnea at around 01:30 so I’m assuming that’s what woke me up.
 
I turned EPR off this night as I read doing so can help with central events. Sadly it didn’t seem to make a difference.
 
Night three:
As my pressure was at no higher than the mid eight range 95% of the time for the previous two nights I decided to set my max pressure to 9 to help stop the leaks. I also set the min pressure to 5 as very occasionally it felt like I wasn’t getting enough air at the lowest pressure.
 
I didn’t shave due to a work emergency leaving me exhausted by the end of the day (when I usually shave). It soon became clear that this was a mistake as my leak rate was significantly worse this night. I’ll be sure to shave before night four.
 
Just like the night before I didn’t stick with the treatment for very long. The leaks were bothering me and no amount of mask adjusting stopped them for very long.
 
My central events went up, I don’t know if the leaking increase could have led to this.
 
Night four:
Now that I’m pretty certain the leaks are being caused by my facial hair I decided to turn the max pressure back to 20. I’ll keep the min pressure at 5 as that was a change made for comfort. I made sure I shaved before I went to sleep.
 
I was very surprised by my AHI score, only one central and one hypopnea. Still, I was only asleep for 1 and a half hours whilst using the machine so it’s a small sample size and I don’t want to jump to any conclusions.
 
The major issue I’m having is with leaks. The first night was pretty much perfect regarding leaks but I’ve struggled since. I just don’t like the feeling of a leak on my skin. I tried to readjust the mask but nothing worked so I stopped treatment. Shaving surprisingly didn’t help either. There’s next to no tug from my hose so that’s not the issue. I may try my size large pillow on night five.
 
Also, please ignore the pressure settings on the night 4 screenshots, I just put the pressure up to dry the hose quicker after washing.
 
Night five:
The positive news from this night is that the leaks were a lot less. The size large pillows give me a better seal. However, even though the AHI seems low the nights sleep was pretty terrible. I woke up a lot and probably slept about 6 hours. Feel pretty terrible today but that’s pretty normal.
 
One thing I find weird is that having an AHI under 5 is considered good. Mine was at 3.82 last night but when I click on events that equates to 20 central events and 14 hypopnea events. That doesn’t sound like a small amount to me and it shows in how terrible my sleep is.
 
Does anyone know where I can find the cheyne stokes data in sleepyhead? I have it ticked in preferences but it doesn’t show up anywhere. Is this because the machine hasn’t detected any instances of it so there’s nothing for it to show?
 
Also, I can’t find the Total leaks and Peak AHI data which are both recommended to be shown when you screenshot the overview page.
 
I’ve attached a daily screenshot of each nights sleep and also an overview screenshot. I have also zoomed in on the parts of each night that had a large amount of events and taken a screenshot.
 
If anyone wants me to screenshot a specific piece of data just let me know and I’ll post it on the forum.
 
Thank you all for your time

I couldn't fit all the screenshots into my first post so I'll add the rest below.

The last one.


Attached Files Thumbnail(s)
                                           
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#2
RE: Losing the will to fight
I think a lot of us can relate to getting tired of the 'treatment', I know there are plenty of nights that I get frustrated with wearing a FFM and want to just go to bed without it and hope for the best, but I know the end result won't be good.

May I suggest you talk to your primary physician to consider some anxiety medication, struggling with sleep apnea is not easy and it takes it's toll on us physically as well as mentally.  Before I became treated I was fearful of falling asleep and yes, there were nights I just didn't care any more, I was tired both physically and mentally.  I sincerely hope 'this tooth will pass' and you will feel better.

Now for the reports.  They aren't horrible, it looks like OA is treated and maybe you can lower the peak pressure, this may help from blowing too much air and washing out the carbon dioxide, which can cause you to stop breathing until your CO2 levels come back up.
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#3
RE: Losing the will to fight
FWIW, general pep-talk stuff from a non-expert, just until the experts get here:

1. It takes time! As I said in another thread the other day, don't expect miracles immediately; those will come later.

2. It could very well take more than one mask! Yes, try the size-L P10 pillows. If that doesn't help much, then try a different mask. It's definitely worth the expense! I recommend the F&P Brevida, which has been great for me. You can buy it in a package with two pillow sizes, XS/S and M/L. I have minimal leaks with it at a relatively high pressure (15) and I routinely do a full night's sleep with it now. The design of the Brevida's nasal "prongs" could make them less invasive & irritating than some other masks, but I'm not really thinking of the P10 here; I assume (haven't used it yet) that the P10's pillows are intended to rest just outside the nostrils.

3. Sorry, can't remember from your previous posts: Were you prescribed a pressure range, or were you starting from scratch at 4-20? I always have doubts about 4-20; it seems like clutching at straws. I would at least make it 6-20 and go from there, as you have been doing, trying to narrow it further. But I would be reluctant to reduce the max pressure by much; 9 seems too low. IOW, if the machine wants to go higher, let it.

4. "It's all in your head." (I'm thinking of that great power-pop song by The Bats from around 1992.) Or if you want something more high-class: "The mind is its own place, and in itself can make a Heaven of Hell, a Hell of Heaven", good old Johnny Milton. Hang in there, and don't let the setbacks make you quit! There's no reason to let them do that. You can win. I suspect that 90% or more of CPAP patients have to go through all of that during the first couple of weeks.
"I wanted to be a Boy Scout, but I had all the wrong qualities.  They were looking for kids who were trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent.  Whereas I tended to be devious, fickle, obstructive, hostile, rude, mean, defiant, glum, extravagant, cowardly, dirty, and sacrilegious."  (George Carlin)
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#4
RE: Losing the will to fight
(05-19-2018, 08:46 AM)Hojo Wrote: May I suggest you talk to your primary physician to consider some anxiety medication

With all respect, and only with regard to that one point, I'm going to disagree with that very strongly. To all beginning CPAP users: Please don't leap to that distant and absurd conclusion, especially if it's possible that you could end up on benzos (Valium, Xanax, whatever). Ugh. Those are super-evil. Here's a revelation for y'all: In the long term, benzos cause major anxiety, enough to put you in a hospital and/or a psych ward (loony bin). At least, before you seriously consider fscking up your body and mind with that poison, read the part of Steven Tyler's autobiography, Does the Noise in My Head Bother You?, where he describes what withdrawing from a benzo addiction is like. Seriously. It's far worse than withdrawing from heroin, which takes only three or four days to get over the worst. A benzo withdrawal can take a month of intense physiological and psychological suffering. Gee, thank you, Big Pharma!

Don't do it, folks. As they say about suicide, it's a permanent solution to a temporary problem. In the case of super-hazardous psychoactive prescription drugs, read up on it first! And I don't mean on the web sites of the pharma craporations; I mean in the writings of dissident doctors who know what they're talking about, like (just for instance) Peter Breggin, Martha Rosenberg, Marcia Angell.

Instead of drugs, give it time! Keep trying. Hang in there. All will be well eventually, and probably sooner rather than later. If it's not, then yes, "seek professional help" as the advice columnists often say, but in the process try to stay away from super-hazardous drugs and the docs-on-the-take who prescribe them at the drop of a symptom.
"I wanted to be a Boy Scout, but I had all the wrong qualities.  They were looking for kids who were trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent.  Whereas I tended to be devious, fickle, obstructive, hostile, rude, mean, defiant, glum, extravagant, cowardly, dirty, and sacrilegious."  (George Carlin)
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#5
RE: Losing the will to fight
Sorry to hear about your struggle.
It appears that you are doing this all on your own. You don't mention any results from a sleep study or interactions with a doctor.
It appears that you have a lot of anxiety and that makes treatment even more challenging.
You are making changes to your treatment in a reactive manner. That will not work.
You need to be more systematic.

I think the forum can help you but it will take focus and persistence from you.
The first step is to establish initial settings.
After a few days of using those settings, post the charts and explain what you feel.
After reviewing the data and discussing, make treatment changes based on the data and reasons discussed.
Repeat.

My recommendations for initial settings are:
EPR=1 as most people find some EPR more comfortable than none. I don't think you should try more at this point since May 14 data showed significant CA when using EPR=3.
Set your minimum pressure to 7.
Leave the maximum pressure at 20.

When you post charts, don't zoom in so we can see how the entire night went.
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#6
RE: Losing the will to fight
Just some observations, you need to relax. Most of the problem here is stress and anxiety. I think you will do best in a range of 6 to 10 cm pressure with EPR at 2. Your experience finding the large pillows work best is why I nearly always advise new users to try the larger size nasal pillows. Shaving should not matter. I have facial hair and it doesn't affect the seal of nasal pillows on my nose. Your leak rate is pretty good in more recent therapy sessions, but the 16th without EPR was a set-back. Use the settings 6-10, EPR 2 and you will find that the pressure range is comfortable and avoids disrupting your sleep. You simply do not have obstructive events that would justify higher pressure. It is pretty normal to have some CA events early in therapy, and they tend to disappear as you adapt. You don't need to worry about CSR.
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#7
RE: Losing the will to fight
Welcome to Apnea Board.. 

I will state right up front- five nights is far too soon to expect improvement. 

It takes weeks/months to get everything sorted to see the full benefit.

Think of it as making the perfect pizza, each little alteration to the ingredients makes it that bit better, and in the end you come up with the pizza that tops the list. 

Take each day as it comes, changes to pressure/mask type/humidity will all gain little steps forward as you work out each thing to get it "just right" as Goldilocks said.

We have all walked a similar path, you are not alone in your troubles getting it sorted... and the people in this group have a wealth of experience and knowledge to help you achieve what works for you. 

Stick with it, and ask questions.  Okay
Coffee
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#8
RE: Losing the will to fight
I was taking lormetazepam for the first 4 weeks into treatment.
Also in my opinion p10 is crap. It leaks when you move the slightest and you get anxious of moving.
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#9
RE: Losing the will to fight
(05-19-2018, 10:29 AM)crowtor Wrote: (The P10) . . . leaks when you move the slightest and you get anxious of moving.

You may wish to look into the F&P Brevida. It is very similar to the P10 in comfort and quietness, but is more "aggressive" (for lack of a more descriptive adjective) in how it seals to the nose.
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#10
RE: Losing the will to fight
Hi everyone,

Thanks to you all for the warm words of encouragement and advice. It really means a lot to know I'm not alone in this battle.

Regarding the anxiety, I have started to get used to using the machine now so the nervousness at night when I'm being treated has improved a lot. I think the mask has been a big help with this. Apart from the leak issues I've had (which I think are resolved now) the mask has been really comfortable. After a few minutes you forget you're wearing it.

Sleeprider, I will try your settings tonight and report back tomorrow (hopefully with good news!).
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