newbie intro (it's about time!)

[Cindy Lou Who]

Hi everyone,it's about time I introduce myself.
Thank you soooo much for all the information this forum contains. You’ve already helped me a lot and you will continue to be a ready resource, inspiration, and reference guide. As an example: learned more about my S9 here than from the RT, and passed that along to my sleep Dr. (who bought one for himself.) The Resmed representative he talked to didn’t know the instrument would average the data captured when changed from a 1 day display to a week, one month, or three months, etc..
Over the past year my snoring gradually worsened to the point I was waking my husband with it. In December ‘09 one third of my work duties were removed from me because I made critical mistakes. I was increasingly forgetful, could not concentrate, and didn’t remember verbal instructions even though I took notes. Constantly irritated, easily enraged nearly to the point of physical violence, very moody and depressed, my co workers were edgy and began avoiding me. To say I was terrified of loosing my job was an understatement! My emotional response was even more rage and anger. I felt I was spinning out of control, trapped in an ever tightening death spiral. I began counseling and medication for Progressive Peripheral Sensory Neuropathy: first my feet, legs, then whole body tingled and burned. Blood tests eliminated diabetes and other diseases as a possible cause. I read “Our Collective Wisdom” and “Where a Newbie should start,” over and over, followed threads, researched other sites. I was slowly, finally getting it… educating myself about OSA and the machines that deliver therapy (so very important). I announced to my husband that I was taking a home sleep study even though he insisted he didn’t hear me stop breathing at night (he has severe OSA).
After the home study in December ‘09 (blood oxygen was 84 and AH of 27), a sleep lab was scheduled in early January. That was a disaster, and even though it was a split study I was not titrated. In February I did a second home study from a different company. The result there: 8 Obstructive, 1 Central, 1 Mixed, 127 Hypopnea, AHI 13.4 and a low saturation of 82.0. At this point I was desperate. My mood swings were worse. Mental fog kept me from making decisions: I felt constantly over-whelmed, immobilized: the smallest deviation from my normal routine paralyzed my thinking.
I couldn’t afford another sleep lab. Asked my Neurologist/Sleep Specialist could he prescribe an Apap machine for the titration, since it looked like I would end up on therapy anyway. On April 6, ’10 I became a hosehead.

After 4 months 100% compliant I’m elated! The constant irritation, gone! Mood swings, gone! Rage, gone! I feel honest anger only when appropriate. Co-workers are beginning to relax around me since I haven’t raged at them in 2 months. Now I enjoy going to sleep (didn’t realize I was avoiding bedtime by ‘I-gotta-do-one-more-thing’.) Yes, I still feel tired, but it’s not the bone-deep exhaustion I had 24/7. Oh, one more thing: my husband had Neuropathy too, numb from the ankles down. After 1.5 years on cpap only the tip of his toes tingle slightly. I can feel coolness in my legs down to my ankles and the pins and needles sensation in my feet instead of my whole body feeling like it's on fire. What a vast improvement!

Thanks to you, I was able to pull out of the death spiral!
With much Gratitude...Cindy

[Hospiceangel]

Wow,
It sounds as tho you have been thru the fire. Thanks for posting your story. Pull up a chair and stay awhile.
Shar:)

[roster]

Co-workers are beginning to relax around me since I haven’t raged at them in 2 months.

You might want to fake a fit every two weeks to keep them on their toes.

[nanwilson]

Whooopie Cindy
You've made a wonderful start to a new life, congrats.
Cheers
Nan

[Desperate_in_DM]

Our stories are very similar. However, I was forced to resign from my job in customer service due to my irritability and rage. My husband has recently told me that he pretty much doesn't want anything to do with me. Even our sleep study results were the same!

I've only been on the machine for two weeks and things are worse. My husband leaves the house "for work" at 6am and comes home from "work" at 7:30pm. His commute is 5 minutes. He eats dinner in the den in front of the computer and is in bed by 9pm. This is no life!

Hearing your recovery gives me hope. Hope to keep up with the machine and to take charge of my treatment because already it's become obvious that my doctor/ clinic won't. Continued success to you!

[PetrusKy]

Welcome Cindy, don't think I didn't notice that you're a Dr. Seuss fan.

[Goofproof]

Co-workers are beginning to relax around me since I haven’t raged at them in 2 months.

You might want to fake a fit every two weeks to keep them on their toes.

Do like I used to do, lull them into a false sense of security, then let them have both barrels. Jim

[Janknitz]

Welcome!

I'm dying to say this: Cindy Lou, how do you do?

OK, I got it out of my system.

[elena88]

Welcome!

I'm dying to say this: Cindy Lou, how do you do?

OK, I got it out of my system.

oh you beat me to the punch!


welcome cindy lou, this is a great place to relax, read, and enjoy umbrella drinks..

[Cindy Lou Who]

Thank you for your warm welcomes and humor. We went on vacation shortly after my post and this is the first time I've had to log on. Goof-Proof and Rooster, I like the idea of "keeping them on their toes." Will have to let them have it with both barrels some time.
The Neuropathy is lessening. I stopped taking the Meds for it while on vacation to see how I would feel when not on my feet at work all day. So far so good.

Vacation before/after A-pap: A Comparison.

Last year’s vacation: I slept 11 to 12 hours each night for the first ten days before I really felt like doing anything, felt irritated emotionally, and in a mental fog most of the time. I went through the motions in all the fun stuff my husband wanted to do; as if I was eating expensive chocolate but it tastes like cardboard!

This year’s vacation after nearly four months of A-PAP: Slept 9 to 10 hours each night but had lots more energy after five days. Not panicked or obsessed about something going wrong. I forgot things but not as often and the mental fog was gone. Really enjoyed doing the same things we did last year: now the expensive chocolate tastes like chocolate!
I’m back to work and have more energy than I’ve had in the last five years. It feels like the ‘batteries’ are finally beginning to recharge. The strain on the body, mind, (and soul) dealing with untreated apnea feels like it’s beginning to heal.

Cindy

[cflame1]

welcome to another Iowan

[roster]

Isn't it finally great to know there is a solution to your long history of problems?

Start reading the efficacy data and let us know how it looks.

[Dreamlady]

Cindy Lou,

Wow, your story sounds EXACTLY like I could have written it a month ago. People tried to tell me I should check to see if I have apnea, but I pooh-poohed that idea. No one else in my family has apnea, so I thought I just snored! I kept blaming everything you mentioned on MS (which I do have a diagnosis for)!

But my neuro is one smart cookie. when I complained to him that I was about to lose my job due to MS symptoms he asked me to describe them. He then said it sounds like sleep deprivation symptoms, and he said he would not treat the MS unless and until I had a sleep study to rule out apena. I was never so shocked in my life when I woke up the morning after my sleep study. The technician told me I stopped breathing 61 times an hour that she was allowed to count, and many more than that were less than 10 seconds. She said I basically got no sleep, even though I self-reported sleeping OK once I got to sleep, and that I never got to REM sleep without rousing. I did recount waking myself up multipe times snoring, though. She said my wave form was so large it overlapped the brain waves, and she had to suppress it so she could see my arousals, and that was the first time she's ever done that.

To say I was floored is an understatement. Then a couple weeks later (last Thursday) I had the titration. I had no trouble selecting a mask, or even using it. It was not nearly as bad as I expected it to be. As soon as I had the mask on, on baseline pressure (4), I felt I could breathe better. The next morning the tech reported I got an excellent night's sleep and she got a LOT of great data. She only had to raise the pressure once, in REM, so I guess my pressure won't be too high. That was the best day I've had in, literally, YEARS. Brain fog - gone! Irritability - gone! I felt sharp and focused all day. Over the weekend, I started deteriorating again. Now I'm back to where I was, anxiously awaiting my machine. Supposed to get it by early next week. Normally, it would take several weeks to score my titration study, but since I'm in such bad shape, they ordered me an auto machine to start with, then we'll change the pressures once my test is scored. She said they didn't want me to go without treatment any longer than necessary, as mine was seriously compromising my health.

To say I can't wait for my machine to arrive is a vast understatement.

Soon-to-be DeamLady

[roster]

Soon-to-be,

Good for your neuro doc! It is horrible how many people with sleep apnea are treated for something else while the sleep apnea goes unquestioned/undiagnosed.

Try to avoid backsleeping while waiting on your machine. For about 50% of patients, sleep apnea is more severe while sleeping on the back.

Make sure you get a machine with full data-capability and an option for efficacy software.