Tonight's my first-year anniversary on CPAP

[napstress]

I recall seeing many years ago a poster of Goofy pounding himself over the head repeatedly with a mallet with this quotation by W. L. Bateman: "If you keep on doing what you've always done, you'll keep on getting what you've always got."

Today is the anniversary of my first night on CPAP therapy. This poster has come to mind several times over the year as I wrangled with this challenging treatment. Either I am insane for trying to make something work that isn't going to work, or I am persistently removing obstacle after obstacle to make something work that might work. I prefer the latter explanation, but a year into it, I'm still not sure!

Pre-diagnosis:
My uncle gives me Sound Sleep, Sound Mind by Krakow b/c he knows I've had sleep-maintenance insomnia for 20 years and I have tried everything I can think of. I learn the phrase Sleep-Disordered Breathing and use it at my next annual physical with my PCP. PCP has known about the insomnia for 10 years but doesn’t send me to a sleep specialist and ENT until I use this magic phrase.

Uncle tells me that even going in with a totally positive attitude about the therapy, it took him a month to adjust.

On therapy:
Major obstacles:
1) Becoming progressively more tired on CPAP—and I was already pretty tired. If what the SS says is true—that the AHI on EncorePro2 is equivalent to the RDI on a Sleep Study—then I should be feeling a lot better, not worse. Since I have regularly been able to sleep at least 4 hours/night with the mask on, my AHI has ranged from 3.0–3.9 and averages 3.45, which is a huge drop from my RDI of 45 events/hour on the sleep study. So why do I not feel 92% better? Likely culprit: CPAP therapy aggravates my sleep-maintenance insomnia. During month 2, I am so tired that I refer to a fork as a spoon. This culminates in a burn-out the likes of which I have never experienced before at the end of month 10.

2) Confusion about whether or not I really have apnea, compounded by my mistrust of my Sleep Specialist (SS) and CPAP therapy (and of doctors and conventional medicine in general).
a. The morning after my Sleep Study (Dec 2010), the tech prepares me to stay for nap study, which means I do not have apnea. Then the SS comes in and tells me I'm not going to have a nap study, which means I do have apnea. On sleep study report, SS writes the following contradictory passage:
"No significant sleep breathing disorder was observed. Significant obstructive sleep apnea and hypopnea was seen in all positions of sleep. The overall AHI was 0.2 events/hour and the overall respiratory disturbance index (RDI) was 45.4 events/hour (....) The lowest fall in oxygen saturation was 95.0%."
In this report I was diagnosed with "Mild-moderate OSAH." I am puzzled and will remain so until month 4, when I learn that I have UARS, not apnea.

The diagnosis of UARS posed an obstacle, itself. I am deeply grateful not to have the serious threat of stroke that apnea-triggered oxygen desaturations cause. However, the absence of that threat made it much harder to stay motivated. What helped me stay with it is that I was so tired. But at the same time, I felt worse on CPAP. I've spent most of this year wondering if this therapy was not only not helping, but actually harming me.

b. Several inaccuracies in SS's first couple of reports to PCP. For example, she wrote that the Xanax I took at the beginning of the night during sleep study may have increased number of respiratory events at beginning half of night (I took it in the middle of the night), and that I did not want to use a chin strap during the titration study (I didn't know such a thing existed).

c. Two of my relatives went into the hospital, one five months before my diagnosis; the other, a couple of weeks after I start therapy. As a result of "complications" (inattentiveness on the part of the doctors), my brother-in-law came out incurably injured to the point of no longer being able to work; my uncle, dead. Both injuries were unrelated to the original problems. This was the uncle who had given me the Krakow book and encouraged me to stick with CPAP for at least a month. He was the only person I knew personally who was on CPAP. My last conversation with him was just after my diagnosis, and I had been on therapy for six weeks when he died. I became a member of CPAPtalk.com that same day.

d. In month 5, I grill SS on possible undesirable long-term side-effects of CPAP therapy: becoming dependent on it; organ atrophy or weakening; stretching of alveoli, lung tissue, esophagus, pharynx, larynx, etc.; pressure on eyes and/or ears; impact of unusual airflow on throat, intestines, etc.; more vulnerable to infection; polyps. SS says, "There is no down-side to CPAP therapy." I eventually discover one in month 11: I ask SS if mask can push bottom teeth inward b/c I had been experiencing a weird sensation in my gums. She says yes.

How long it takes to get things happening:
I was expecting to be up and running on CPAP therapy within a month or two—or to know that it wasn't the right thing for me. I have been astonished at how long it's taken to make any progress. It took me 3 months to consistently able to wear mask at least four hours/night and 4 months to be able to sleep at least four hours/night with it on. I don't learn my true diagnosis until month 4. I don't get a good fitting for a mask until month 7, when I request of the SS that I try the masks on a) while on my back, b) with the PAC liner, c) with my mouth open, d) at my maximum pressure. For my first mask, she (and the DME) had me sitting up, with my mouth closed, and at less than my maximum pressure—instead of how I actually sleep! At 8 months I ask SS if most people struggle with CPAP therapy like I do. She replies, "Most people who struggle with it don't keep at it as long as you have." Even she had suggested the month before that I look into getting a mouth device. I finally feel Clear or Mixed for most days for about two weeks in month 8. Then I get a cold and don't feel that way again until month 12. And it takes me 11 months of going back and forth between forum and SS before I finally understand which numbers I should be looking at on EncorePro—and why.

Why I keep trying:
I initially was hoping that CPAP therapy would help get rid of the insomnia. I thought maybe its reducing the number of microarousals would also reduce the chances of my coming fully awake in the middle of the night. Or at least therapy would increase the quality of those few hours of sleep I did get and I would start to feel more rested. If either of those things happened, it wasn't until Month 8. In the meantime, I did have little moments that encouraged me to keep trying. When I wake up one morning during month 1, I notice that breathing feels really good on CPAP. I also notice that it feels like all the cells in my body are swirling, like galaxies. In month 3, I feel clear and cool inside my head and not-tired behind my eyes for the first time in my life for one day. It doesn't happen again until month 9. In month 4, I discover some unexpected positive side-effects to CPAP therapy: a) rarely get congested at night anymore, b) my right Eustachian tube clears when I mask up and I rarely experience autophony (hearing my own voice quite loudly in my right ear) anymore, c) I no longer have to get up to pee in the middle of the night, d) heart palpitations gone, e) an increasing awareness of holding my breath throughout the day. In month 9 after my crunching numbers every way I can think of for several months, Pugsy looks at my data and points out that my AHI seems to vary little. Suggests that since I have UARS and not apnea, that I notice how I'm feeling as another guide besides the numbers. After a few weeks of recording how I'm feeling, I develop 3 categories based on the descriptors I used in my journals: 1) Clear: woke clear/ pretty clear/ no need for nap/ not-tired behind my eyes and with a cool, clear head/ a window in my head; 2) Mixed: clear for part of day, but also tired, needed a nap, or drowsy in the evening; 3) Exhausted: tired all day/ exhausted/ worn out/ wasted. In month 10, I discover by reviewing my journals that on no night without CPAP do I ever attain the Clear category. In month 11, making a few charts confirms that I am in the Clear category when I have had at least 6 hours of unfragmented sleep, or one fragment lasting fewer than 10 mins. I am in the Exhausted category when I am awake in the middle of the night for over 45 mins, if I have more than one full awakening, or when I get fewer than 6 hours of sleep. Also confirm that naps have no affect one way or the other on whether or not I will get a full night's sleep. By Pugsy directing me toward my feelings, I learn a lot about how I function and what I need. In month 12, I sleep 6 hours, either unfragmented or with fragments lasting fewer than 10 mins, 18 out of 22 nights—with only 2 of them on Xanax; I experience no pre-menstrual sleep fragmentation for the first time in 20 years; my AHI is the lowest it's been; I have not experienced the Clear category for a while, but haven't been in the Exhausted category much, either. Feel I am in the Mixed category most of the time.

Thank yous:
I thank forum members who are creators of products and services I found very helpful in my first year: Karen of Pad-A-Cheek, Dane of the mask trial program, and JediMark, creator of SleepyHead. Very special thanks go to Pugsy for encouraging me to install EncorePro2 and SleepyHead, helping me to do it, and for her extraordinary empathy, which helped me turn a big corner in becoming successful with CPAP therapy; to RobySue for spending so much time helping me understand the Alternative Standard for scoring sleep events and for modeling how she coped with her struggle with insomnia: it gave me the courage and inspiration to keep working with mine; to SleepingUgly and Bright Choice, who suggested that I might have UARS: I never would have known that that was what I had without you; to Janknitz' for her article, "Taming the Mirage Quattro," which helped me control my mask leaks the day I read it; to NightMonkey who, on two occasions, cried out for help on my behalf; to DoriC for giving me a sense of belonging; and to archangel, who defended me, reassured me, validated me, and made me laugh all at the right times. And thanks to all forum members who posted their questions; I learned a lot by reading the responses your questions generated.

[RandyJ]

Happy anniversary!

I am almost there myself... we all have our hurdles, but I'm glad to see your journey is progressing well. This is a great community.

[Slinky]

HAPPY ANNIVERSARY!!!

[2 B Sleeping Soundly]

Napstress,

Happy Anniversary; that was quite a year!! It does sound like you are having positive progress now and that has to give you some hope

My wish for your next year is that it will be markedly easier and full of Clear days and restful nights. You have put the time in, shown great strength and perseverance, and totally deserve a year such as that!!!

John

[chunkyfrog]

Happy anniversary!
---and ma-ny moooore.

[robysue]

napstress,

Happy anniversary!

You've been through the wringer this year.

But---it sounds as if things are finally turning a real corner: You write:

In month 12, I sleep 6 hours, either unfragmented or with fragments lasting fewer than 10 mins, 18 out of 22 nights—with only 2 of them on Xanax; I experience no pre-menstrual sleep fragmentation for the first time in 20 years; my AHI is the lowest it's been; I have not experienced the Clear category for a while, but haven't been in the Exhausted category much, either. Feel I am in the Mixed category most of the time.

While it's true that you are not yet in the Clear category much of the time, you are also no longer in the Exhausted category day after day after day. And that's major progress!

You may get not 6 hours of unfragmented sleep night after night, but you ARE getting it SOME of the time. And you're getting no more than minor fragmentation on most nights And without the Xanax. And that's also major progress.

Perhaps you are now finally beginning to sleep well enough on most nights to start paying off the long standing sleep debt which has only grown deeper in the many months of your long drawn out and very difficult adjustment.

Here's hoping that you continue to make major progress and that in another few months, you start to see many more Clear days than Mixed days and only the rarest few days in the Exhausted category.

Robysue

[jweeks]

In month 9 after my crunching numbers every way I can think of for several months, Pugsy looks at my data and points out that my AHI seems to vary little. Suggests that since I have UARS and not apnea, that I notice how I'm feeling as another guide besides the numbers.

Napstress,

Congrats on your anniversary. I learned that I have UARS a few months ago. I very much appreciate that you replied to my posting back then. While I am sorry that you have this, it is comforting to know that I am not alone here. Thanks for sharing your story.

I noticed the same thing with my AHI data--it hardly varies no matter what pressure I run at. However, I feel awful in the morning unless I run above a certain pressure level. I set my machine based on how I feel. If I feel off of my game, I'll bump it up a bit. If the air builds up in my stomach, I'll back it down just a little. I ended up at 13.5/19.5 on my BiPAP machine, almost exactly the same pressure that I was titrated at when I had OSA.

-john-

[ozze_dollar]

Wow,what along post. Good luck I hope it all works out. I know how you feel about "do I really have OSA"?
I have felt that myself. Eventually i will have another test.
What else is there?

[Mr Bill]

Congrats on making it a year! These especially resonated with me...

... It took me 3 months to consistently able to wear mask at least four hours/night and 4 months to be able to sleep at least four hours/night with it on.

In the meantime, I did have little moments that encouraged me to keep trying. When I wake up one morning during month 1, I notice that breathing feels really good on CPAP. I also notice that it feels like all the cells in my body are swirling, like galaxies. In month 3, I feel clear and cool inside my head and not-tired behind my eyes for the first time in my life for one day.

I wish you even more success!

[Kody]

Happy Anniversary
sounds like you've been down a pretty rough road with all this over the last year. Hopefully you will keep making progress, wish you all the best.

[Starlette]

Good afternoon Napstress.

Congrats on your year anniversary and many, many more

So glad DH doesn't read my posts. There is no worry that he'll ever be embarrassed by what I say

One Christmas movie I love watching every year is "Santa Claus is coming to town". Told and sung by Fred Astaire.
I think it's the right movie I'm thinking of. Anyway, there is a part in the movie that they sing, "One foot in front of the other till you're walking out the door". To me, that is pretty much our theme song on the forum. We muster up the courage to do what we have to do in terms of our health to have the quality of life we all desire to have. How do we do it? One day and one night at a time. We're all with you Napstress locked arm in arm together moving forward towards a better quality of life.

Starlette

[napstress]

Thanks, all, for your well-wishes for my continued success on CPAP therapy! This streak of 6–7.5 hrs of sleep a night and fewer days in the Exhausted category have me feeling optimistic. Just 3 months ago, I in the Exhaused category 68% of days, and was getting fewer than 6 hours of sleep—broken up by a long period of wakefulness—every, single night.

I noticed the same thing with my AHI data--it hardly varies no matter what pressure I run at. However, I feel awful in the morning unless I run above a certain pressure level. I set my machine based on how I feel. If I feel off of my game, I'll bump it up a bit. If the air builds up in my stomach, I'll back it down just a little.

Thanks for telling me about this, jweeks. I want to try it. Now that I actually have Clear and Mixed days, I believe how I'm feeling will be a better guide than the numbers. It would have been impossible for me to go by how I was feeling at the beginning b/c I was feeling Exhausted most of the time.

One Christmas movie I love watching every year is "Santa Claus is coming to town". Told and sung by Fred Astaire. (...) there is a part in the movie that they sing, "One foot in front of the other till you're walking out the door". (....) We're all with you Napstress locked arm in arm together moving forward towards a better quality of life.

That's one of my favorite Christmas specials, Starlette!

[Pugsy]

Congratulations on your anniversary.

In some ways I think UARS is a worse burden to bear because we don't have the usual "numbers" to reinforce the mental aspect of this therapy. Having to go on "how we feel" is a much harder subjective standard.

Fragmented sleep for any reason will seriously impact how we feel. Hours of sleep can also be a critical need. Sometimes an extra hour will make a huge difference but darn it....sometimes that extra hour is damn near impossible to get on a consistent basis when we have other sleep issues like fragmented sleep or insomnia for some reason.

We desperately want for the cpap machine to be a magic wand and fix all our problems but unfortunately it doesn't work that way for many of us. There is so much more to having good restorative sleep than having zero apneas.

I wonder sometimes if those of us who do have plain jane vanilla OSA that get "good numbers" from the onset and yet still don't feel nearly as good as they think the numbers say we should feel, might also have a measure of UARS hidden from normal view because the OSA overshadows it.

All we can do is keep putting that one foot forward day after day. Mask up night after night and realize that there will be good nights, so so nights and horrible nights. The alternative is to have horrible nights all the time which isn't a viable option.

So WTG on sticking with things. It isn't perfect but it is better than the alternative even though at times it sure seems like it isn't better.

[Passiflora]

Nice to see this thread. Man CPAP can be hard work. Some nights I want to rip the mask off and just say FORGET IT, but I never do. When I get to that point, I revise the settings or switch masks. Whatever it takes. Before CPAP, I was on a lot of (expensive) medication, I slept 12 hours/night, I had crazy heart palpitations in the evening, my throat was constantly congested, I had to get up to use the bathroom once/night, and I felt terrible. In two months I've been able to wean myself off a lot of medication, I have occasional heart palpitations, my throat is clearer, occasionally I use the bathroom at night, and I function better than I did before starting CPAP. I'm not where I want to be, but I'll continue to try. Thanks for all of your inspiration and support, all of you.