This Sucks or WOOHOOOO!!!! trials/ tribulations of new user

[ofarchesandants]

I posted this in response to another post but thought it might help others to give it it's own post.
cheers,
gregg )

I certainly understand the "This Sucks" sentiment or making you feel fragile. I'm in my early 40's and very athletic, a rock climber, kayak instructor and expedition leader, etc, etc. The thing is, I've been sleepy my whole life. I think I became so athletic because if I didn't keep moving i would fall asleep wherever i was including behind the wheel of a car (lucky for me never an accident from that). I always said my body operates on the law of inertia, "a body in motion wants to stay in motion and a body at rest wants to stay at rest." The thing is, i never knew why. I had no clue my sleep was poor, only that it didn't matter the quantity i got, i was still sleepy every day.

I had my sleep study about 9 months ago. CPAP as well as surgical options were mentioned. Surgery seemed too daunting as a first line but I wasn't ready for CPAP either. The thing is, I'm also an emergency room nurse and i see the people in the ER who use CPAP, most of whom, at least in that setting are very ill and feeble and it just did not fit the image i have of myself. Not to mention my thought that it would suck for dating. ;o) I wasn't sure what to do.

Then about 6 months later i was talking with a friend of similar age and also a kayaker. She credited CPAP for saving her marriage and said she felt better physically and emotionally and mentally. The thing she said that really hit a cord with me was "I feel soooo much better, I just don't care about the other stuff." Well that was it for me cause I'm just so tired of being tired and not accomplishing what i want out of life due to, well let's call it due to being "fragile or feeble" because of excess sleepiness. I truly believe this tube on my face is going to create that young, verile person I believe myself to be, no matter what chronological age I am.

It has not been easy for me though. My friend took to it well from night one. My titration sleep study was the worst night of my life as I woke up every time they changed the pressure and felt like hell the next day. After that it took another month to get the study result, work out insurance issues, order and receive my machine. I started on a nasal mask but i have chronic low grade sinusitis and could not deal with the pressure, plus i got a head cold within 3 -4 days of use. I contacted my sleep clinic and my equipment provider and had my prescription changed to customer/patient preference. Well, how the hell do i know what my preference is?? I've never used this stuff before and at least as far as i've seen, there is nowhere to go to try different masks to see which one fits.

Well i got a full face mask the next time. It shot air into my eyes and neck. Well that was obviously not the right size but at this point i had expended what insurance would cover. I made some modifications to the foam insert in the mask. It was better but only a better gradient of awful. At this point I was about 2 weeks into the process and mentally, physically and emotionally feeling worse. Now i knew i had poor sleep and so thought about it and hoped for a cure and this "cure" was only creating more problems. How depressing!! I was determined not to give up though. I kept remembering my friends words, "I feel soooo much better, I just don't care about the other stuff." Well shit, I want to have that experince too, so i kept plugging away.

I went back to my equipment provider and told them of the issues. They said my face is thin and athletic and masks are primarily at this point designed based on the misconception that all CPAP users are overweight. They recommended some alternate masks (i wish someone had told me that from the outset.) but of course at this point it would be an out of pocket expense. I thought, let's at least get alternate size inserts for the mask i have. It should be a relatively cheap thing as opposed to a whole new mask. Well hell, those turned out to be about 60 - 70 dollars each so i declined.

Thank god they also told me about this forum. I learned of others trials and tribulations. I learned tips and tricks and i learned of sources of cheaper equipment like ebay and cpapauction.com I was still miserable but at least took comfort that others had gone through similar misery and come out on top or were getting there. I spent lots of money and ordered several different masks, though far cheaper than it would have cost me. Still it was daunting laying out cash just to see if maybe perhaps this one would work. You buy clothes and you get to try it on and even return if it it's not right. You can test drive a car or paddle a kayak before you buy. But a device where the fit is absolutely critical and can both literally and figuratively save your life. Well for that from the sleep lab, the physicians and the equipment providers it's basically, "Here try this and we wish you well but if it doesn't work out, that's not our problem." Can you tell i'm
just a "tad" bitter about that. ;o) And I'm in the medical profession.

So anyway your absolutely right, this whole process does "SUCK!!!". But hey I want to feel better dam it!! Let's make that, I want to feel good, to have a day of not being sleepy for the first time in my life. To not struggle through every single day just to stay awake or to get out of a chair. I hid it quite well from everyone and people had no clue what a monumental task something as mundane as getting out of a chair was or is for me. Especially given how athletic i am to compensate for that issue.

So let's keep plugging away was my thought even though i was feeling more like shit all the time. Poorer sleep quality and knowing it. Actively working at it without result (or only negative results) instead of my previous incarnation of being blissfully unaware my sleep or lack of proper sleep was the issue. I can't begin to describe how frustrated, exhausted and depressed that all made me. I tried more masks. This one has too much pressure on the bridge of my nose, this one leaks air, etc, etc. Sometimes i would wake up and remove the mask sometimes i would find it off when i awoke in the morning, sometimes i could not wear it at all. I simultaneously had learned to program my machine so I could set it at pressures i could tolerate. But without the right mask that was somewhat futile. My machine records my length of use and the longest i achieved was one hour and I was growing more tired and drained by the process all the time. Feeling emotionally
labile and wondering when the upward swing would start. But I just had to content myself that each step was going to get me closer to some relief of a lifelong ailment. An ailment whose symptoms i was all too aware of but whose etiology i was not. So just learning the cause was a victory, even if the result of that new knowledge was initially feeling far worse than i did before.

Things had gotten so bad that I dreaded the thought of going to sleep each night. I didn't want to have to keep going through the process. And many nights without a fitting mask i didn't. I just succumbed to sleep without attempting CPAP. Feeling even my regular poor sleep was better than this new fight to attempt to sleep.

It's now 2 - 3 months since i started CPAP and 9 or 10 months since my first sleep study. Well this morning, my first thought when i got up was WOO HOO!!! I received yet another mask yesterday. It felt good when i tried it on and I was actually looking forward to going to bed. I got in bed later than normal, in part i guess from delaying the inevitable dissapointment of another failed promise. I did have to remove the mask at one point last night. At first i struggled to even remember why as it felt comfortable when i went to bed. Then seeing all the condensation in the mask, the answer came flooding (pun intended) back to me. It was rain out or excess water dripping on my face. So why was I, why am I happy about that. Because i felt better (still sleepy but better) and my machine said I was on for 2 hours. That may seem small but hell, it's double anything i've done before and comfortable too until that water on my face. And even that i have a
potential solution for thanks to this forum. Between the hose huggy i bought and the wire reptile cage heater that I will wrap around my hose tonight, I hope to reduce or eliminate the rainout.

Whatever, at least it's a step in the right direction. And more importantly for me, this was the first of the many steps i struggled through that actually made me feel better instead of worse. So not only do I have the physical improvement but an emotional one far greater from finally, finally, finally seeing a positive improvement instead of all the negative consequences. I know i still have a long, hard road ahead of me but i am soooooooo happy for that little gain. Many people look forward to feeling normal again. Well for me, I look forward to not being tired for the very first time in my life. The sleepiness has been such an ever present part of my life that for most of my life, I was not even aware there was another way to feel. I'm very excited to finally being on the road to finding out for the first time in my life what not being sleepy, what having energy, what not struggling to stay conscious or in motion all day feels like. )

I guess that's a rather long winded way of saying "Stay with it!!" But I hope you find it as worthwhile as I'm feeling it is at this moment. And I hope I continue to feel improvement. So please forgive some giddiness as I say HHHOOOOORRRRAAYYY!!!! for finally a step in the positive direction. ) ) )
Cheers,
Gregg )

[echo]

WTG Gregg!!! Good initiative to start a new thread. Great post

[johnwayne8]

hi gregg,
i have been using cpap for 7months and was ready to quit, i finally wrote a post and everyone was so wonderful and was given some input and i took their advice and i tried the nasal air 1 product and i love it. I also tried several masks to no avail and the doctors office sucked they were no help, i finally had a great night sleep in 7 months since being diagnosed with this and i also went thru hell!!! i kept thinking there is a better way and i thought it was just me and i was doing something wrong, i hope you keep reading this forum because this is where you are going to get the most help and ideas. i wish you luck in finding the right "mask or equipment. i hate the mask, i went from nasal mask to full face mask to 5 other mask until i tried the nasal prong product and i am like a new person today,(hopefully i am not getting excited to quickly about this product and it keeps working) try to stay with it and try everything until you find the right product. take care! karin

[kteague]

Glad to hear you're persevering and optimistic. You said, "I know I still have a long, hard road ahead of me" but maybe not. Maybe the worst is over. Sounds like you've paid your dues.

About changing your pressure to one you can tolerate - you didn't give specifics, but while you need to be able to tolerate it to use it, it must be therapeutic or you'll still not feel better or be protected. Once you've conquered the mask issue, your next task is to be sure you are using a pressure that works for you. If your pressure is too low, it can cause you to take of the mask.

You must be made of strong stuff, to have maintained your athletics in spite of how you feel. My guess is the same qualities that make for an accomplished athlete enabled you to pursue this as a challenge to be overcome. As with any physical endeavor, there are milestones in conditioning, each to be celebrated. Two hours of sleep - that is a big WOOHOO!

Kathy

[LISusan]

Gregg - Your words are music to my ears. I am on this journey one week and am exhausted. I don't know if the mask fits right, I don't know if air is leaking, I do know that I can't fall asleep and for the first 5 nights took the mask off during the night, too disgusted to keep it on. Last night it stayed on all night, but I feel worse than ever today. I really don't know what to do next, except wait and see for a while. This forum is great and I have been trying to take time to read "Our Wisdom", but I'm so tired. More tired than before CPAP.

Susan