New Here - Introducing Myself

Hi, everyone.

I'm new here. I don't know if I'm posting in the right place or if I even belong on this site.

I'm 46, single and no kids. I've been mostly lurking and reading the "success stories" for the past few weeks. What started as me just looking for information turned into, "OMG, other people have had/are having similar experiences (the fear of going to sleep, the daytime zombie dead-tired thing, the years of suffering). I've had insomnia and/or sleep issues since my early 20s. Every day I wake up feeling like I was on a 3-day alcohol bender. My head feels the way your head feels right after you accidentally bang it on something -- except I feel like that all day long. My eyes are sore and dried out no matter what I do and my vision is blurry. It's hard for me to explain how flat-out bone-tired I am all the time. And OMG the brain fog. Yes, I'm upright. But if you were to ask me to solve a math problem or read a paragraph and tell you what I read or even drive more than 5 miles most days? It's not going to happen. I don't feel sleepy. I feel stoned and exhausted and .... disconnected.

I've had issues on and off (mostly on) for years. I can sleep for 9-12 hours and still wake up more exhausted than I went to sleep. In the past 10 years or so, multiple doctor visits have resulted in every sleep medicine, anti-depressant, etc. known to man. Relaxation tapes, self hypnosis, sleep hygiene, you name it I've tried it. It's not worrying that causes me to not sleep. It's not sleeping that causes me to worry about not sleeping. I often had dreams where I was trapped in a small space or suffocating. My whole life is scheduled around being tired. I no longer do outdoor activities, date or go out with friends. If someone invites me somewhere in advance, I have to tell them I'll let them know the day of, not sure if I'll be slightly-tired that day or flat-out exhausted. As some of you mentioned on this site, trying to sleep had become a full-time job. I knew something else was wrong if no "remedy" was helping.

Fast forward to this September and it was like my body hit a brick wall. All my symptoms pointed to Lyme disease (but no rash, blood tests negative) and I was put on antibiotics. Since then, despite tests for everything under the sun, scans, etc I'm experiencing fatigue like I've never had before in my life. I wake up like this and spend all day, struggling to get through the day. Sometimes the fatigue is so bad, I feel like I'm going to faint -- which I almost did the other day in a store. I've also developed heart issues (palpitations, a-fib twice and then occasional very low heart rate). It was a cardiologist who, after listening to my "story" suggested a sleep study. He doesn't think heart issues are causing me to be tired. He thinks it's a sleep disorder causing heart issues and fatigue. God bless that man.

Somehow, by fighting with different health systems, I managed to get a sleep study at the end of December which showed I have mild sleep apnea and an excessive amount of "respiratory events" that the pulmanologist explained were like skipped heart beats that were shooting adrenaline through me and waking me up several times each hour. I was horrified and yet excited. Finally, what I've been trying to tell people for years was right there in black and white. My sleep is horrible, not refreshing. He told me he was ordering the second sleep study/CPAP test, would call me within two days of the test so I wouldn't have to wait for the follow up visit, and we'd go from there.

I had the CPAP test almost a week ago (Saturday). The second test was worse than the first (and it wasn't supposed to be). Oddly enough, as claustrophobic as I am, I had no problems with the full-face mask (I chose that kind after trying the others) and even told the tech it was okay to turn the air on when it was already on. But nowadays, I'm so overly tired and used to fighting to stay awake during the day and stressed about sleeping etc , I couldn't sleep. The sleep study started at 11pm. I was still awake at 2:30 am, took an Ambien, woke up again at 3:00 and back to sleep at 3:30. The test was done in a hospital room with a rock hard cot-bed, other patients coughing, etc. and of course all those wires. As many of you know, they kick you out at 5:30 (this tech let me sleep until 6). The tech was great and informative, but also told me it's possible insurance wouldn't approve such a short test and there's a small chance either I'll have to pay for the test or the doc might order the test done again. But since the CPAP test showed no apnea or respiratory events, she told me there was even a greater chance I would hear directly from the CPAP medical supply company to pick up my machine even before the doctor called this week.

The test was done last Saturday. Almost a full week ago. Yesterday, I asked for a copy of the results from my primary care doc, but they're mostly in medical terminology lingo (I can make out most of it, but nothing to explain why I have yet to hear from the doctor who ordered the test, or the medical supply company). The cardiologist, meanwhile, said he can't rule out a heart issue until we see how CPAP affects me.

I'm scheduled to go back to work on Tuesday. I work a very fast-paced tech support job. The kind where I have to toggle back and forth between several programs while talking with sometimes irate customers and only 30-60 seconds between calls. Try that in zombie room-spinning mode. If I go back and need a day off or can't make it through the day, they can fire me. My only other choice is to stay on short term disability for a little while longer, which I truly don't want to do. I feel like a deadbeat. What kind of person takes this many months off of work for fatigue? I have no control over any of this and yet somehow I feel so ashamed. Crazier yet? During all of this I had a job interview for a job I've wanted for years. The interview was via Skype. I failed miserably because I couldn't think straight enough to give answers to really easy questions and was so tired. For all I know, the interviewer thought I was drunk.

I'm trying to be realistic about a recovery plan if CPAP does work for me. I don't expect to be one of the ones who uses CPAP at home and immediately feels like a new person the next day (although that would be nice). I don't know why all of this suddenly got worse in September. But on paper, I look perfectly healthy -- except for the sleep study results -- so that has to be it. So many posts mentioned getting the CPAP the same day as the test and boy am I envious. At the moment, all of my stress seems to be focused on "what next" since I haven't heard anything. I'm so tired of just existing -- instead of being alive.

I'm sorry this post was so long. Others won't be. I just needed to get this all out/explain who I am. Even if no one reads it, it helped to get it out of me (again, I don't have anyone to talk to about any of this). I got up to page 17 of the success stories, so I'm off to read page 18.

Hi Tracy,

Welcome to the forum! Glad to hear you are hopeful about treatment. Many people here will assist you with answering questions, sharing experiences, and tweaking your settings as you begin therapy. I recommend that you read through some of the pinned topics at the top of the forum, especially:

viewtopic/t61785/Especially-for-newly-d ... hange.html

and

viewtopic/t35702/Where-A-CPAP-Newbie-Should-Start.html

if you haven't done so already. Make sure you get a data capable machine from your DME otherwise it will be difficult to help you fine tune your data.

And definitely read...

http://maskarrayed.wordpress.com/

Welcome, Tracy. You sound a lot like me five years ago, right before I was "assimilated".
In my case, resistance was indeed futile, but the outcome has been awesome, just not always as quick as I expected.

Welcome Tracy. I hope you can get your machine quickly so you can start therapy. Hopefully it will help. Work all your issues here and know that the "mask search" is a journey in itself. I went thru 6 before I found one that was comfortable and doesn't leak. As others have said, be sure you get a data capable machine. The DME will try to give you a non-data-capable machine because they make more profit off of them, but at your expense. Again, we'll step you thru your issues and know that you are not alone.

Sheriff

Welcome to the forum.

After reading your history can I make a suggestion for you to push for in terms of a cpap machine.
Try to push for the new ResMed AirSense 10 AutoSet for Her....the "for Her" part is important as that model has a special apap mode that might be of benefit to your and your arousal situation. You may not need it but it would be better to have it available than to need it and not have it. The regular AirSense 10 Autoset only has the regular apap mode. The for Her model has the regular apap mode as well as this special apap mode and of course both have cpap mode available.
The cost is the same in terms of what insurance will pay so it's a no brainer really...get everything you can get for the same amount of money.

This machine.
https://www.cpap.com/productpage/resmed ... idair.html

Thanks everyone for the advice, the links and making me feel welcome.

I'm still biting my nails waiting for a follow up call from the pulmanologist as to what's next. My primary care doc (who's not a sleep doc) said he thinks it's "some other" disorder that's causing my issues because the sleep study noted I recalled "dreaming" when I wasn't in REM sleep. When I told him I hadn't dreamed but rather had the usual Ambien "hallucinations" (dream-like visuals while you're still awake), he looked at me like he'd never heard of Ambien causing any such side effects. So now I'm wigging out thinking the pulmanologist is going to scrap the CPAP idea and attempt to treat me for what are actually Ambien side effects.

Either way, the wait is agonizing (I know, join the club, right?)

Thanks again all who replied/listened.

It means more than you know.

UPDATE: I didn't realize my responding would bump this whole thread. Sorry about that. Now I know.

Every note that someone responds to automatically goes back to the top here... you did nothing wrong.