For firesign10 and me.

Remember this day? So Fucked Up

I ended up with my friends Richard and Michele. At the end of the night (or early morning) around two-ish on the fifth, Richard and I were sitting up talking photography, after Michele had enough sense to go on to bed and I was falling asleep in the chair I was sitting in. Next thing I know Rich is telling me to go on into the spare room and try and get some sleep. So I stumbled on in there. I tried. Really I did. When ever I would start to drift off I would awaken with a start. Sometime after three (I think) I gave up and got dressed and let myself out the front door and made the drive home.

Got home and into bed and slept for 7-8 hours straight. With my faithful Darth Vader Machine somewhere at my side. Unusual to sleep that long for me. Reckon I was tired...

I generally sleep 5-6 hours a night. Even with a sleep aid. It seems to be enough. Any less than that though, and I’m screwed.

CPAP Addiction?

Am I addicted? To a machine? Dunno about that. Still not crazy about sleeping with a mask, but without it, I would surely die. Or at least collapse in an incomprehensible, exhausted heap. Eventually to die. I was so close before I got The Darth Vader Machine. I was past exhausted. I have no doubt I was a danger to myself and others. At the end of that time I was terrified of driving any distance because as little rest as I was getting, I would fall asleep almost anywhere. Even across town.

Think about that ~ ANYWHERE. At any time.

On the bus. Sitting at my desk at home, at work. Behind the wheel. Literally anywhere.

I was sooooo exhausted. I really didn’t know what was wrong with me. My doctor suggested a sleep study because it sounded like I had OSA. Obstructive Sleep Apnea. I said I’d think about it. The thing that really pushed me over to the dark side was when they were gonna try to put me on medical leave at work. Whether I wanted it or not. I didn’t want it.

But it was rapidly becoming apparent (even inside my thick, sleep deprived, skull) that something was terribly, terribly wrong. And something had to be done. Look at the signs and symptoms:

"Common signs of obstructive sleep apnea include unexplained daytime sleepiness, restless sleep, and loud snoring (with periods of silence followed by gasps). Less common symptoms are morning headaches; insomnia; trouble concentrating; mood changes such as irritability, anxiety and depression; forgetfulness; increased heart rate and/or blood pressure; decreased sex drive; unexplained weight gain; increased urination and/or nocturia; frequent heartburn or Gastroesophageal reflux disease; and heavy night sweats."

From wikipedia

Let me tell you, I had them ALL at the time before I sought treatment.

The Study Part 1

Probably one of the most uncomfortable nights in my life. Being hooked up to all those electronics and trying to sleep. No matter how homey they try to make it, let’s face it, IT SUCKS. Of course when you go back for the titration study, then IT BLOWS! *grins*

It was not a good night. I found it hard to believe that they could have gotten any good data from that. I was outta there by 5:30 AM.

Couple of weeks later I went to the doctor and it was for definite I had some form of OSA. We set up the titration study THAT DAY. I could not take much more of this crap.

The Study Part 2

For the uninitiated the titration study is where you try out the CPAP (at the sleep lab) and by varying the settings on the machine they figure out what settings are optimal for you while you are trying to be asleep.

CPAP defined ~ continuous positive airway pressure, in which a controlled air compressor generates an airstream at a constant pressure. This pressure is prescribed by the patient's physician, based on an overnight test or titration. Newer CPAP models are available which slightly reduce pressure upon exhalation to increase patient comfort and compliance. CPAP is the most common treatment for obstructive sleep apnea.

That night was a disaster. They got me hooked up to all the electronics and put the mask on me and I lay down. And had a fucking panic attack. I never have these. But I still knew what it was!

Blood pressure was up, breathing was shallow, I was sweating like mad. In a matter of 30 minutes or so I had soaked the bedclothes in sweat. I was in a fearful state. I sat up and pulled tore that mask off and started on all the electrical connections. I felt like a fucking cyborg...And I was going to get out of there.

The tech came in and tried to talk me out of leaving, but I was having none of it. He got the electricals off me with minimal damage to them or me, and I bolted. Both the sleep clinic and my doctor (The Doctor herself called, I was impressed.) called and tried to get me to set another appointment. I was inconsolable.

Reconciled or Did I Just Give Up Surrender?

Of course once I realized this was my only course of action to get treatment (Well it was!) I called the clinic myself and set the appointment. The second time went better. I guess I had reconciled myself to it. On my next visit to the doctor she had already written the prescription up and promptly sent me off to collect the machine. Her office had already made the appointment for me. I WAS IN THAT BAD OF SHAPE.

I went over to the facility (A division for home care) and acquainted with the Remstar and fitted for a mask. It was just one of those over the nose jobs. I was skeptical about that because I knew I SNORED LIKE A FREIGHT TRAIN. I could wake the dead. The tech was a beautiful girl, who said if I had any trouble I could call the 800 number day or night. And she or her partner would answer the call depending who had the duty. I never got that far. But it didn’t take me long (about a week, I think) to figure out that this mask wasn’t going to work. So I called them (during daylight hours) and asked for a solution.

She wanted me to try a chin strap. I said I would, but could she loan me one of the full coverage (over the nose and mouth) masks as well? Just in case? And she did. Fitted it for me and showed me how to adjust it. I tried the damned chinstrap for about a week. No dice. It was uncomfortable. And I don’t think it really worked.

So I tried the full coverage. Better. But I still wasn’t sleeping as well as I could. I thought. Another call to the doctor and the Technician (she was cute!) They said to give it some time as I was still getting acclimated to the machine.

RUFKM!! Or CPAP ~ Don't Leave Home Without IT!

It was around this time I had to visit my sister in Florida. A nice thousand mile drive. One way. But it would get me out of the house and out of town for a week and a half or so.-And I was sleeping better. If I got tired I stopped. And I took my time too. Met some interesting folk in that trip.

Saw one or two old friends. Realized from talking to one of my buds there were not too many of the old gang left. Seems if you stayed in town your mortality rate fell dramatically. Or you ended up in jail. Or a host of other things. None of them good. And let’s face it I didn’t run with the preppie or jock crowd. I was in the other group. We believed in sex, drugs, and Rock-n-Roll. A lot of us died young and left (a fairly) good looking corpse.

But I digress...
A day or two after arriving I must have become acclimated to the machine because one morning I fairly bounced out of bed. (!) I remember I was up before any one in the house. And I was sitting there drinking coffee and I realized, I FELT GREAT! It was actually good to be alive.

I hadn’t felt this good in literally YEARS! I was frickin’ energized. I felt that way until recently.

Make no mistake about this... The machine has literally save my life. Literally.

So if I am addicted ~ I really don’t give a shit. The machine is my friend.

I think the current home and work conditions have robbed me. I think once I get the home thing settled and things level out for a while, I’ll start sleeping better again.

Let’s face it, I’m completely stressed out. At least I know it.

But I think I can see the light at the end of the tunnel. I just hope it isn’t an oncoming train!

And one more thing - The machine is usually with me wherever I go. When traveling it is one of my carry ons. I'd be screwed with out it.

I adjusted the settings last night on the Darth Vader machine. And while it took me a while to get to sleep, I think I slept better than I have in quite sometime. I think.

I am going to try these settings out for a week or so...

Since I only slept four to four and a half hours and I am vertical and not falling asleep I think something must be right.

Time will tell. When I first got the machine I used to bounce (BOUNCE I SAY!) out of bed even after just 4 hours of uninterrupted sleep.

Honestly, I have been feeling tired for months now. It would be great if this adjustment was gonna fix this. I realize it is self treatment and I am not supposed to do this. But what if the sleep study was wrong? As I believe it was.

Time will tell.

Met with the respiratory therapist went better than I thought it would. Got a new mask (I have to take them the old (new) one back on Monday). Just didn't think to take it with me, but I certainly do not wish to be charged for TWO! At 2 bills + that would just suck!

Got one just like the first full coverage I started with. Same model and all.

Told the guy what kind of issues I was having and he said he might agree that the pressure was set too low @ 8cm. And then said that he couldn't boost it without a prescription from the ENT's office.

I said, "We'd best get someone from over there on the phone then, because I'm not leaving until we adjust this damned thing. Because I cannot continue not getting enough sleep. This is unhealthy."

He then said he didn't think it would happen today. I said, "Gimme the phone then...And we'll see about that! How do you get an outside line here?" I reached over for the phone, and he said he would call them right now. And started dialing...

You reckon he thought I was serious?

Took him about 10 minutes to get someone on the phone that would tell him it was okay to boost the pressure, because as he said, "He is suffering from 'Air Starvation.'"

Ah. So now mine enemy hath a name! Air Starvation!

From Hell's heart I stab at thee! For Hate's sake, I spit my last breath at thee!

He spoke to the doctor's PA. Whom I think was confering with the man hisself. Took them another 10 minutes of back and forth before I heard the magic words, "So I can boost him 2cm to 10?"

YESSSSSSSSSSSSS!

He hung up and readjusted the machine, and fit the mask for me.

And we were DONE! I was outta there...

It doesn't pay to fuck with a Sleep Deprived TexasT's

I was really close to my friends, Michele and Richard's house. So I gave them a call to see if some one was home. Michele was there and told me to "Come on by..."

That was a mistake...

Not good. Different.

Back in mid October I had a titration (Sleep) study done. Because I wasn't sleeping as well as I thought I should be with my CPAP. When I first started using the thing (after I got used to it) I felt great after a night of sleep. Had it for about a year and a half.

The last 6 months? Not so much. Of. That. Feeling. Great. Feeling...

So back in October I had this titration study done. The tech had me try these nasal pillows. Seemed okay. Initially.

The ENT doctor said the study showed that I had a Max pressure requirement of 8 CM. I was skeptical as I had previously been set @ 14 CM. Quite a drop.

So his PA made an appointment for me to get the machine adjusted. The NEXT DAY! I was kinda shocked about that.

Got a new tank and hose, etc. All the stuff they can give you when you go in for service(?) The consumables I guess you'd call them. Tech talked me into trying these nasal pillow things. And I REALLY wanted them to work. So much lighter. However, they didn't quite work out at home as well as they did in the study. I'd get to a point almost every night where I couldn't breathe and pull the thing off. I figure it is some kind of allergen clogging me up.

Finally got fed up with that and pulled out an old sample full coverage mask that I had laying around and started using that. Things were a little better (not much though) for a while. But now...

I am falling asleep okay. But most nights, I wake up anywhere from 90 minutes to 2-1/2 hours in. Sometimes I can get back to sleep fairly quickly. Other times, like last night, I turned off the lights a little after 10 PM and dropped off fairly quickly ~

**I swear the mask is like some kinda pavlovian experiment. On with the mask, off to sleep I go. When I think back on all the trouble I had getting used to it, I have to laugh.**

~ I woke up a little after 1AM. Struggled to get back to sleep and finally did. Until sometime after 2:30. When I woke up this time I just went ahead and got up. Because I WASN'T going back to sleep.

So the last month or so, I've been getting anywhere from 2 to 5 hours of sleep a night. 6 max. Some nights.

At best waking up once a night. At worst 2-4 times. I *know* this is a trend that cannot continue.

I haven't felt too exhausted yet. No falling asleep at my desk at work. Or on the bus really. Unless it is after a really long 12+ hour day. If I keep this pattern up I'll get there though.

But this sort of *feels* like it did before I was first diagnosed with OSA. Just not as severe.

Called the ENT to make an appointment to discuss this thing. I need options and solutions. Not guess work and speculation on my part. Haven't heard from them yet.

Also called the folks @ Home Health Care so that I can get another mask from them. One that is fitted correctly. Got an appointment for tomorrow afternoon. I'll have to leave work early. But C'est la vie!

So. My fellow OSA'ers: Any insights? Suggestions? Another week or two of sleeping like this and I'll be ready for a padded bedroom and one of those shirts that have the really long sleeves that tie off in the back!

I want that feeling I used to get when I first started using the CPAP. You know the feeling where you feel like you've got the world by the ass ~ And nothing can stop you? Bounce out of bed feeling great?

I *know* I don't have to feel like crap all the time. Cause I've kicked this thing in the ass before.

AND I WANT THAT FEELING BACK!

x-posted @ sleep_disorders.

Got to Cube City early-y-y this morning. Managed to get what I had planned for the whole day done before lunch. How the hell did that happen??

As an aside, I only gloated a little bit about our Prez-to-be and what a wonderful day it was to be alive and a citizen of the USofA in this new and hopeful era! *grins*

Amazing what one can get done if one ignores any type of distraction. You know. Phone calls, email (Except for the ones I was working from), Instant Messenger, pleas for help, bitching team mates, folks from Brazil or India, car fires and burning buildings, fire and brimstone falling from on high, etc...You know, just the usual stuff. *grins*

So what the hell was I supposed to do with the rest of my day? I called the respiratory therapy folks and setup an appointment for this afternoon, that's what!

To get the Darth Vader Machine re calibrated. Set an appointment up for two in the afternoon. This would leave me with enough time to get home (on the bus), grab some lunch, pack up the machine and drive across town to my appointment.

Called BBFH's cell. She didn't answer, of course. So I left her a detailed message saying I was taking half a day off. (Take THAT for your unplanned vacation bitching). Then followed up with an email to My Asian Overlord AND BBFH. Basically said this was a medical thing (it IS!) and I was bailing at lunch to take care of it because sooner would be better than later. POW!

She did IM me to whine about it, but since I don't really work for her, as she is fond of pointing out when I ask her for something, I was having none of it. Logged off at around 11:00 and walked out to the bus stop. Uneventful ride out to the Park and Ride, and thence (it is a word!) into the car and to the house.

*Aside - I just looked outside. Jeebus! It ain't even 6:00 PM and it is DARK outside - And not just a little either. Gonna take me a bit to get used to this*

I pull into the driveway and The Queen's car is in the driveway. This in itself is pretty unusual, but she was sound asleep upstairs. Merciful heaven! She must be some kind of sick. This hardly EVER happens.

I pack the Darth Vader Machine ™ up as quietly as I can. Program the address for where I'm going into the TomTom ™. And quietly leave. Stop and get some lunch *DON'T ASK WHERE*

And then set off across town. I arrive and every one is very friendly and helpful. Arturo, the respiratory technician resets the machine, gets me a new water reservoir, hose, some filters, and a NEW MASK! Dude! All for the low price of about $30.00! My part. Insurance's part is much larger. But that's why we pay them!

He fits the mask for me. Takes my money and courteously sends me on my way.

I am really excited by this change. I am hoping to get that same feeling I got when I first got The MACHINE ™ Even after as little as 5 hours sleep I was bouncing (BOUNCING I TELL YA!) out of bed in the morning.

Kinda like a crack head after the first time they smoke it. They spend the rest of the time trying to get that same rush! And usually never do! Only this is in a good way!

WoooooHOO!

I feel like I have been productive as HELL today.

Oh! And the fence guys have finished. Except for the hauling all the crap away! YESSSSSSSSSSSSSS!!

So that was my day. What did YOU do?

Not much success with Contractors for roof and fence today.

Had a call from the urologist's office today. PSA was normal. That was doctors appointment number 1 for this week. Appointment was yesterday.

Going to a sleep study tonight to see what the hell is up with the fact that I am not sleeping well.

This is a titration study. Usually sleep study part two. Since I already have a CPAP, I don't need night one. They put a CPAP on you and test the pressure to determine what is best for you.

Then tomorrow I have a Doctor's appointment in the AM to talk to my Doctor about renewing some meds. And a couple of other things...Upping dosages, alternative drugs...And some other crap.

Got a roofer set for tomorrow and a fencing contractor to come by and give me quotes at some point or another. Hopefully I'll get some more phone calls tomorrow.

Honestly, it must be nice to have so much business that returning phone calls isn't a priority.

Meh!

Hoping for pleasant dreams tonight. But it is kinda hard to sleep well with 20 or 30 electronic connections hanging off of you from various places. I haven't really been sleeping well for quite some time.

We'll see...

I was sitting there minding my own business when I heard this kind of a grinding noise. It was too organic to be the actual bus. It gradually got louder and louder. I finally realized it was some fella snoring!

In the past I would have gotten kind of annoyed. These days though I am somewhat sympathetic. Almost wanted to reach across the aisle and gently shake his shoulder, "Hey fella... 'Cept I couldn't really see where he was. I could see some other folk getting pretty annoyed though.

I can't really go there anymore. Especially since I was diagnosed with a sleep disorder. I've become so self-conscious about my own snoring that I don't even sleep on planes (or other forms of mass transport) any more. And on a flight to Singapore from Houston, that can be quite a trick! That's up to a 24 hour flight. Bad enough going to Europe, but to the far east it is downright exhausting trying to stay awake. Now I might doze a little but I alway SNAP myself awake right before I really drop off.

That last flight to Singapore I was damned glad the boss had scheduled us a day off before we had to report to the local offices of the Big Clam. It was like 2 AM Singapore time by the time we made it to the hotel and I was too wired by that time to sleep. After a nice breakfast at around sixish, I crashed and slept for eleven hours straight!

Any ways the point of this post was...HellifIknow! No really:

If I could have discretely figured out where this dude was I might have gently said something to him as we were getting off the bus.

Just glad I wasn't sitting next to him! I might have been more annoyed than sympathetic...*grins*

Well I'm off to put my Darth Vader mask on and go to sleep. Night all.

When I called her on last Friday - She was gonna send me one out that day. Got a package from them  But I was damned if I could figure out how to torture myself with it. Here's why:

What those goobers in her warehouse had sent me was a strap rig for some kinda mask. Not a chinstrap as requested. Of course I didn't find this out until I made an appointment to see Stacy this past Tuesday. This is not really a convenient thing to do. But she's got a great sense of humor and is fun to talk to. It don't hurt that she ain't too hard on the eyes either(!)

She gets me a chinstrap and says, "While I'm there why doesn't she go ahead and give me the "Darth Vader" mask, as well. "Just so you've got all the options, Tom" Girlfriend, you musta been readin' my mind!

We chat for a little while after that, and she tells me she's not happy where she is now, and thinks she wants to get out of medical all together. Seems management is under the impression she's losing her apathy for her patients. I ask her if she thinks she is losing it. She smiles and admits, "Yeah, I might be." I tell it might indeed be time for her to bail.

And then it is time for me to bail. I grab my new gear and beat a hasty retreat. Drive back out to Katy to the Park and Ride to catch the bus to downtown Houston. Most days I'd rather take a beating that drive into work!

As I'm walking up to the bus that is parked at the stop, it starts to pull away! WTF!! I yell and wave my arms and the driver stops. Miracles never cease! Uneventful afternoon at the office. Only one uselEss meeting...Honestly I get out of most of them. But this one we are Strongly urged to attend. Dunno why. There's nothing new learned in it that I hadn't already got off the intranet. Two wasted hours...

I bail out of the office on time for a change. On my way out of the office, The Queen calls. The Cool One has not left with the rest of his companions for Boot Camp! In fact he's at the house! The recruiter had screwed up and not administered one of the tests required for his "A" school. They only offer this test on Wednesdays, *Whatever, dude* So he will not be going to Boot Camp until 5th January! And boy! Is he pissed! Almost lost his signing bonus due to this goofball of a recruiter. She's about turning somersaults! We discuss a few other things and then ring off, and I head off to catch the bus. Uneventful ride home.

Once I get there, I discover I'm just hang dawg beat!

About 8:30 or 9:00 I decide to hit the bed. I really need a good nights sleep, so I decide to try the full mask thing and fool with the chinstrap after I get caught up with my downtime (sleep) a little more. Fill up the humidifier reservoir and hook the thing up.

It is a Fisher & Paykel Flexifit 431. Hmm. It's BIG. I get the thing hooked up and on. Turn the air on. Of course, it takes a little while to get the thing fitting right and relatively comfortably.

I read for a while with it on. It is a little hard to get used to.

I finally decide I'm tired enough and turn off the light. It's about 10:00 PM, I think.

Almost two hours later. Despite being really tired. And trying really hard. I haven't been able to get to sleep, yet. Effing midnight...Again...Turn the machine off, get my ass outta bed. change back to my old mask and get the chin strap out. Put the strap on. Then the mask. I bet I'm out in less than 15 minutes. Shit!

Wake up at four something. I don't know why, but I've been doing this a lot lately, even when using the CPAP. Take the mask off and turn the unit off. Shut my eyes for a little while longer. Wait until quarter of five, get up and in the shower.

My night is ovah...

I don't think the FLEXIFIT is going to do it for me. It's just not comfortable enough for me. Feels like a torture device on my face.

I'll continue to do lord_keepers method of training myself to keep my mouth shut. The new chinstrap I've got should help with that. I believe I am making progress...

Cross posted at sleep_disorders

And my situation is starting to get desperate.

When I was at the surgeon's on Monday (I had my crooked septum fixed - and turbonates trimmed, basically speaking, on the 15th of October - see my previous posts) for a followup. After I complained about not sleeping, he told me to go ahead and try the CPAP again. I still don't think he's hearing me...I was hoping he'd give me something that would help me to get to sleep. Because the damned thing is drying me out so bad it wakes me up.

I managed to get about 4 hours sleep with the CPAP on Monday night. I swear 4 hours of continuous sleep with that thing is like seven to ten hours without it. I felt really good. Prior to that I've been sleeping pretty much horribly an hour or two and then awake, fall back out for an hour and then awake. etc...for days. Tuesday night I got about three hours sleep in half hour increments. And stayed home from work. Called in sick. Well actually I emailed in and signed off, but not before blistering my bosses eyes with a withering note about how unsympathetic she is. Shit...I had to apologize for that today...So stupid...Wednesday wasn't much better...

And the DREAMS are just awful. Like stepping into the twilight zone or something. Bad enough to wake me up. (sometimes in a cold sweat!) When I fall back asleep a little while later, mor than half the time I go right back into the dream right where I left off! It's getting so bad I don't want to go to bed...

It is driving me bug shit fuckin' crazy!! Uh - 'scuse my french...But it's pretty bad.

I've built up such a deficit now that I'm sleepy all the freakin' time. I've turned up the humidity on the CPAP like the Techie told me to do, even tried to fine tune it a little, but I don't think it is gonna work out (as I said above) for me as long as I sleep with my mouth open (snoring still). It dries me out so bad I wake up. And I must have it pretty bad cause they set my CPAP at 14 (CFM?? Not sure what it is they measure the pressure settings in).

And if they catch me nodding at my desk at work again, they'll send me home until I get this shit fixed.

Trouble is...

I don't know what else to do!

I'm getting to be so tired all the time that I don't think I'm thinking straight. I figured the Eye, ear, nose and throat specialist would know about and understand what I'm going throyugh but I'm either not putting it strongly enough or he's not listening.

And I'm afraid this is turning into narcolepsy.

Out of desperation, I made an appointment to see my MD on Monday to talk to him about it - He's the one that sent me to the sleep clinic in the first place...

Should I call and try to talk to the surgeon and see what, if anything HE can do?

Please consider this a small plea for help!

xposted on
sleep_disorders