Can I have my own thread?

[SleepingUgly]

Can I have my own thread where I can post my problems and people can inundate me with expressions of empathy and helpful, supportive advice? Where I can say blasphemous things like, "I dread going to bed with CPAP" and no one will get out their old hoses and whip me with them?

Here's where I am: I had surgery last summer. Then I had some months off the hose. Then I did some experimentation on the hose (never able to sleep through the entire night with it, but got some data indicating residual FLs). Spent more months treating my rogue allergies with ineffective treatments in an attempt to avoid nasal steroids. Now I'm back on nasal steroids and can breathe again. But I still have EDS. On AVERAGE it's not as bad as before my surgery (with some days much better, some just as bad as my bad pre-op days), but there is still plenty of room for improvement, especially lately. The few weeks with no EDS after my surgery are becoming a faded memory that I need to resurrect (I can't begin to express how amazing it was to not be tired and be able to think...). So, I think it's time to make a concerted effort to get back on CPAP, much I hate to (whimper).

I'm fortunate that I'm not desaturating, so as far as we know, there is no medical reason that I have to be on CPAP. It's a quality of life issue. The problem is that CPAP can worsen the quality of my life, at least temporarily, by disrupting my sleep further. Yes, it can potentially help down the road if I can get it to the right pressure without it waking me with leaks, facial discomfort, aerophagia, etc. But I am a very light sleeper and if a pin drops in another state, I'm awake, so it's no small thing for me to adjust to CPAP. I've never slept through the night with it without waking, but I have in the past been able to keep it on through the night, despite waking. So I should be able to do it again. I hope. I am going to try.

I don't know if there are a lot of people like me who don't HAVE to be on CPAP, but have symptoms that would benefit from it, and if so, how do they persist with it in the face of worsening daytime functioning when functioning is not good as it is... It seems like either I'm functioning decently, so I don't want to screw it up by using CPAP, or I'm functioning pretty badly, and I can't afford to make it worse by using CPAP.

I'm thinking that if I post publicly, it will be harder for me to weasel out of sticking with it, especially with support. Anyway, so what say you all? Can I have my own thread?

[Wulfman]

Anyway, so what say you all? Can I have my own thread?

Looks like you've got one.

My only question is....... If anybody else posts to it, do you lose part of the ownership?

OK......Git R Done!


Den

[Drowsy Dancer]

Anyway, so what say you all? Can I have my own thread?

Sure! Take two, they're small!

DD

[rosacer]

SleepingUgly

Thanks to let us know how are you doing. I'm sorry things are not going better after surgery.

I'm of those who need to use CPAP, if I don't do it I have no brain. So, to me there is no option. You say you have symptoms who are alleviated when you use CPAP, take courage and try it again if you feel it really helps. I know it's very boring to be unable to think clearly or to have other bad symptoms, yes the CPAP is some times as boring as the symptoms but we have no other choice. Maybe one day something else will be invented but until then we need to concentrate on the good side of the thing.

Don't need to use a bad language to have answers to your thread I'm sure. You are always very polite and good intentioned answering to a lot of threads wanting to help others with your knowledge. Thanks, and I wish you to find the courage to make what you need to do with the CPAP and get well.

[Bright Choice]

sleeping ugly, I don't have any answers for you but I wish you the best and hope that you get some good answers to solve your problems. I am sure you will!

All of you "pros" always seem to have the right answers for the rest of us. We all need to acknowledge that the "pros" are struggling too and don't necessarily have it all under control. My best wishes for you and for regaining your strength. I guess my only comment would be to acknowledge how much surgery takes out of you what with all the sedatives, drugs and stress on the body for healing. I kept reminding my husband of this when he went through some surgeries and then it really came home to me when I had surgeries as well.

It is really an eye-opener to hear you say that you have never felt all that well on xpap. You seem to have it all "under contol". Blessings to you and I hope some good solutions come your way.

I am so thankful for all the good information you have provided for me.

[Slinky]

Dang, SleepingUgly!!!! I had no idea ..... !!!! (((hugs))) In addition to this thread you can have all the yarn you need too! Maybe that nasal pillows type of mask that looks like a fat nasal cannula for 02 ????

[-SWS]

I'm thinking that if I post publicly, it will be harder for me to weasel out of sticking with it, especially with support.

I think publicly documenting and soliciting support is a great strategy.

Anyway, so what say you all? Can I have my own thread?

Absolutely!

Okay, keep us all in the loop. We want to know how well you're doing at sticking with CPAP. We also want to hear about when you didn't stick with CPAP and why. This think tank called cpaptalk can offer ideas and support to help with "falling off the wagon". Good luck!

[SleepingUgly]

Sung to the tune of REO Speedwagon's Back On the Road Again (Does anyone know that song besides me?)

"I'm back on the hose again, my sleep's going to get worse now
And maybe I'll sleep with CPAP sometime, and not just lie around
Until then I hope I get out of bed tomorrow and make it through the day
I'm back on the hose again, I'm on my way..."

[jnk]

How dare you start your own thread! Who do you think you are?!



You may need the perfect mask and straight pressure (no "auto-ing"), but I'm sure you'll find a way to get used to it. It has to become something you win the battle of wills with your own brain over. The sleep-brain can be a stubborn beast to tame. As long as it thinks there's a chance it can win the battle of wills against your wake-brain, it will fight like the dickens. It can take months for the sleep-brain to give in and accept the PAP and then figure out it can sleep better with it than without.

It is that much more difficult when you think of it as optional. You have to commit to it for a certain amount of time, regardless, I think.

After that, though, if I were that light of a sleeper and was not desaturating, I might begin to look at non-CPAP options after 6 months or so of solid, every-night PAPping, if I were still not getting good sleep.

If the point is to get good sleep, disrupting your sleep isn't the answer, obviously.

But you have to win that battle of wills with yourself first to see where you actually are with consistent PAPping.

In my opinion. And you KNEW I had one.

You do realize we are all on your side with this, regardless of how it turns out, right? I mean, your presence in the forum is treasured, either way. OK?

[LoQ]

leaks, facial discomfort, aerophagia, etc. But I am a very light sleeper and if a pin drops in another state, I'm awake, so it's no small thing for me to adjust to CPAP.

That is exactly what I went through. I had to solve all of those problems and more.

Good luck with your quest!

[SleepingUgly]

It is really an eye-opener to hear you say that you have never felt all that well on xpap.

In all fairness, I did feel somewhat better at times on CPAP, prior to my OSA diagnosis when I was experimenting with various pressures. I just couldn't cope with the masks I was using beating up my nose and I was not on the right pressures, as I hadn't been diagnosed or titrated. Shortly after I was diagnosed and titrated, I had surgery (septoplasty, turbinate reduction, and tonsillectomy). Then I was off CPAP for a long time, until I started doing some experiments. I didn't get very far because off nasal steroids my allergies were going nuts and I couldn't breathe well through my nose at night. So this is really the first time I'm doing CPAP post-op ON nasal steroids.

Last night I tried 4cm to compare it to post-op 4cm, pre-nasal steroids, which showed lots of FLs. Interestingly, during the hour I laid there wide awake, my AHI was 3.5. I think that pretty well proves that AHIs can be artificially inflated when one is awake during the recording time...

I'll try again tonight. Thanks for the support everyone.

[jnk]

. . . (Does anyone know that song besides me?) . . .

I think one of my parents may have had that on 8-track.

https://www.youtube.com/watch?v=DP5g9VZjxrI

[DoriC]

SU, You're always there for those who need support so we'll be here for you now. I'm so sorry you're struggling and I know the experts here can help. I think it would be good since you're starting your very own thread if you could give a review of your sleep study results, titration, pressures you've used, masks,etc, kind of like starting over from scratch all in one thread. I'm so glad you decided to do this.

[SleepingUgly]

I think publicly documenting and soliciting support is a great strategy.

Do you have to call it "Soliciting"? I'm already on probation for Owning a Clinician's Manual and Changing One's Settings Without a Prescription.

[SleepingUgly]

I think it would be good since you're starting your very own thread if you could give a review of your sleep study results, titration, pressures you've used, masks,etc, kind of like starting over from scratch all in one thread.

Are you trying to kill me, Dori?

Briefly, I had an AHI of 4 in NREM and 58 in REM, for a meaningless average of 15.7 (or something like that), but with near continuous flow limitations in NREM (the latter of which the doctor said, "It's your NOSE").

Here is the longer version:

viewtopic.php?f=1&t=52012&st=0&sk=t&sd= ... ue#p479645

That thread should explain how originally I was on an empiric trial of CPAP prior to an actual OSA diagnosis. During that time, I think I was moved too quickly from nasal pillows to a full face mask, and I couldn't tolerate the full face masks thanks to my big, narrow nose. Prior to the surgery, I started using the Activa LT and I think I'll use that now, and maybe go back to nasal pillows now that I can breathe through my nose fairly well. I just haven't found a FFM that works with my face and since Dr. Gold's talk, I feel less motivated to try to make a FFM work if I can get a nasal one to.

So I'm off to bed with 4cm and my Activa-LT. I'll read in bed with it on by holding the book 2 inches away from one near-sighted eye to the left of the forehead post.