This is my response to the “Dear Diagnosis” Blogathon
December 27th, 2008
If you haven’t read the letter from Manhattan Medical Associates, read that first.
Hopefully this letter has arrived on the indicated date, however been having trouble with the timing circuit after I tried to graft a serfboard into the chameleon circuit in hopes of at least getting the old familiar shape, causing an overload which re-engaged the randomizer into navigation.
So congratulations, you might be thinking, now that you’ve received the letter that you’ve been waiting for an agonizing almost 4 weeks, since your PSG on December 1st, 2008. (you’ll later find that insurance paid the claims for the sleep study the day before. Not that the PSG summary [printed on Dec 3rd, 2008] took over 3 weeks for the results to travel through the mail vortex to make the 3 block journey.)
You’ve done little research on sleep disorders, despite your suspicions with the sleep study turning into a split when the sleep tech woke you to shove a mask on to your face. But, you’ve read enough to think that this should finally fix all your problems, even if a sleep problem was the last thing you thought you ever had.
Plus you will get a new toy to play with….for at least few years until you get bored of looking at your sleep data.
Be warned, that this will be one of those rare times somebody will be annoyed with you for passing a test. And, you’ll hold back saying that your actually jumping for joy on the inside that they finally found something wrong with you that can be managed, and potentially with great success.
But, be careful, and be informed, because in the near future you will run into a lot of expenses. Which will burn through all your savings and start running up those cards again…. Also all that clothing that you mysteriously out grew in a couple of months that precipitated the suggestion of getting a sleep study, that you may decide some new year’s day to toss out, thinking you’ll never be down at that size again.
DON’T DO IT.Because you will. Even after the other mysterious surges in weight.
More SPOILERS, read ahead if you dare. (which I know you will ;)
What’s going to put the damper on your joy, is that once you repay the sleep debt from sleep apnea, you problem of insomnia/sleep fragmentation will come back, and don’t worry…lucid dreaming will come back as well, along with those hallucinations you used to hate. And, you’ll still hate them, especially when it causes sleep paralysis.
While the journey ahead will be rough, including insensitive doctors with their “Good news, your test results are negative….[we still don’t know what’s wrong with you.]” Or they only care about the single word in the MSLT summary of “normal", and refuse to discuss it any further…to the point where the doctor will tell you that he’s ignoring you until you move off of the subject. He’ll even tell other doctors that you’re crazy and you somehow got the idea that you have Narcolepsy (when it was your doctors that had first mentioned it to you, that led you to research it and finally fess up that you do experience sleep paralysis and hallucinations, both while falling to sleep or waking, and the occasional hypnic jerk when your falling asleep.)
While you will soon find that there’ll be no more talking to your mother, and you’ll feel physically isolated from anybody that can truly relate. You will meet a lot of wonderful people in the virtual world, and while one of them will plant the idea of meeting them in person at a conference and then back out at the last moment. There will be some people there that have been told to watch out for you…particularly someone named Sharon. Or someone (named Sean) that will spot you wearing a “First Timer” ribbon sitting alone, and stop you from doing that ever again…
And, there will be other amazing/inspiring people in your life, such as an Ann or a Julie, even a Bailey.
While this may on occasion interfere with your pursuit of being with your other family that pursues that blue box that travels through time and space. You will have another new family that you place more importance on. And, sometimes you’ll wonder if you’ve seen somebody at one that you had seen before at the other…. But, you’ll have, at least, two families that get the things in your life that your first family doesn’t get about you.
And, perhaps someday you’ll get to starting up a local support group, or work up to considering one more move to somewhere with one.
Your almost 5 years in the future self…
…stumbling around in the time vortex, in search of pants he used to wear before things started getting weird near 30 or worse near 40….
Meant to write this sooner, but wanted to do some research online on Costochondritis and Diclofenac....but never seem to remember when I had a free moment....
Anyways...somewhere about 7 month ago, I woke up one morning with severe lower right chest pain, and it made it difficult to sit up to get out of bed....ended up rolling out of bed. I figured it was a muscle injury....not sure what I did during the night to cause it.
Wearing a rib belt helped with the pain, so I used one on and off. Though as the frequency went up, I started wondering if there was something wrong with my CPAP/Sleep Apnea. Since, I recalled from last download that my AHI creeps up slowly during each sleep set, and get's much higher in the second sleep set than it did in the first. Usually reaching ~10 about an hour before I wake in the morning. So, perhaps the problem is indirectly from the management of my sleep disorders - AutoCPAP & Xyrem.
I wondered if my AutoCPAP was set too high. Since, I had come across my CPAP titration when I was re-reviewing my sleep studies to see if what they said at the NN Conference about a PSG could be sufficient to diagnose Narcolepsy. In fact found that the PSG said I might have it, but clinical correlation is needed. But, the doctors I have don't have time for that....they need objective tests with binary answers. Anyways...what I had found was the titration just tried 4, 5, 6, 7, 8....7's good enough use that. But, the upper limit of 15? I'm told its just a number that is generally safe enough. Plus the newer machines can tell if the apnea would respond to pressure or detect if the pressure is making things worse.
There are nights were I do hit 15, but its quite sparse and when I've been sick (AHI those nights can also get into the 20's).
But, it turned out to a major operation in getting the SmartLink software working again on my Windows XP VM. A while back after a Window patch it failed to boot, I was able to rollback and try again and again. Eventually removed some of the offending .Net packages, cleaned up and reinstalled and things were mostly working again. But, evidently I had left things bad for whatever the SmartLink software needed. So I ended up really removing all the .Net pieces...and reinstall the portions not used by SmartLink, letting the SmartLink installation install its version....
I had tried installing SmartLink on my Windows 7 VM, but that's on a FreeBSD host, so no USB2 support at the time. I have since picked up a Silex SX-DS-4000U2....
I finally was able to run some reports the morning before my next appointment with my Narcolepsy doctor. But, conclusion was that it didn't seem likely that my pain was directly being caused by things....though if it was a concern we could lower the upper limit (and raise my lower pressure again, with my 90% pressure 7.5 and 95% pressure 8.0. I had long ago raised my start pressure to 7.5 (when I was on just regular CPAP I had raised it to 7.5 until it was lowered back to 7 after the second PSG, because sleep lab can only do whole numbers....and sleep lab said I slept best on 8 ) I had intended to get that done, but never got around to it. There was some discussion though on whether a new titration might be in my future, and the word BIPAP was dropped.
I hope that if BIPAP is necessary it happens sooner than later...since I'm considering getting another Intellipap AutoCPAP for when I get around to building my new go-bag. The old bag works great for my Respironics M-Series, but I don't really want to go back when next time comes.
Anyways...things continued....where it was a morning or two about every other week, or more. While looking to see if there were other things I could change related to my sleep. There'll be new pillows and bedding eventually...was going to start replacing things gradually, but seems I've decided to wait until all the items are here to replace everything at the same time. That could be interesting.
Has been wonderful, I don't know why I waited so long.
The mask arrived on March 15th, but then sat around waiting for a good moment where I could do the boil and bite fitting. Some stretch of time where I would feel up to be vertical for a sufficient stretch and have flossed and brushed my teeth. A side effect of using such a mask, is making sure that I've flossed before going to bed now (something I've been known to put off until morning when I'm too sleepy or rushed.)
During this time, I had switched to using a different backup mask....my EasyLife Nasal mask....a weird mask that creates suction to stick to my face while delivering pressure, though the headgear soon started in aggravate my problems and I was starting to develop a sore on the bridge of my nose. The night before finally starting the CPAP Pro, I end up going back to the Bravo II for one last night.
Meanwhile, later on March 15th, I finally got around to ordering the TAP PAP, which I had somehow hoped would be the better mask given the direction of tubing....but I'm getting ahead of myself here. I ordered it from CPAP.com, and had them ship it to my personal mailbox at the UPS Store to avoid any chance of a repeat of the problems I had with USPS on my previous order. Though it came in a box that probably would've fit in a parcel locker this time. (though I've been left delivery notices for boxes that would've fit, lately...so it might've been at risk.) The order arrived on March 22nd, another shipment had arrived earlier that week....so it was going to make a challenging grocery/UPS store trip on March 23rd. And, it was.
Especially with the one last hit of winter that weekend.... I only did a quick pick up of a few items, like bananas, donuts and oatmeal....breakfast, intended to make normal grocery run on Sunday, but the weather didn't permit it. So, another week of delivery. Just as well, standing and moving about is getting to be a real challenge these days. And, it was still a tight cram to get the items into my duffel bag, and balance the cpap.com box on top as I walked home. But, glad I had still done the quick grocery store trip in hindsight.
But, before that journey...I had finally gotten around to doing the boil and bite of the CPAP Pro on March 20th. The mask only comes with one size pillows, where standard size fits 99% of users. Except I'm almost always the outlyer, rarely ever been in the 99% of any other mask that I've tried...and evidently that's the case with CPAP Pro. While testing the fit of the pillows waiting for the water to boil, I found that the standard pillows barely made contact with the edges of my nares...suggesting that it was going to be a problem once I laid down and more so as the night progressed. At it was very exact on alignment to make the seal, which would add to the challenge in bed. Well, it took a couple of tries to do the boil and bite...the first time I had bit down too soon, second time I still didn't get as close as possible to the front, but thought that it would do. I had let the bite piece fully harden before remembering that I should trim....which now fully hardened wasn't possible to do. Decided that the excess wasn't bothering me, that it could stay. I also didn't get the back all the way down, so I thought that might cause problems....seems the main one is that it doesn't hold onto my teeth as well as it could.
Pretty much ever since I started CPAP, I've had a problem with pressure sores on the back of my head (could be in part due to a problem with seborrheic dermatitis or something affecting the same region....I did have a massive cyct that was just below hairline removed the summer before OSA dx. Yet another procedure where I was given a local, but ended up completely out and waking was difficult...)
But, virtually every mask on the market insists on using the same spot as a contact point. Some masks are more tolerant though on the strap not being placed there.
Pretty much there is only one mask on the market that solves this headgear issue. The CPAP Pro from http://www.nomask.com.
The problem is that its a pricey mask and it never came up with my DME...though it could just be that its not from one of the big vendors that they carry a selection of and I don't know if I could get them to get it for me or not. And, insurance would pay 100%, so it would've made sense to get it....except for the DME's rigid 6 month rule, and I had gotten a new backup FFM last winter to use a few times. While my nasal pillow mask is pushing 1 year....I did in fact order a replacement -- as referenced in "I did something amazing this morning".
While doing that post, I had researched CPAP PRO some more, and signed up for their email list....where the next day they sent me a limited time offer to get one for $119. But, since I had just gotten the new Bravo II, and I was waiting for late March to inquire if DME would....
Meanwhile, I got an email on February 28th, announcing that "Headgear has just Become a Think in the Past".... Introducing the TAP PAP Nasal Pillow Mask! CPAP.com has it for $129, including shipping and return insurance. And, it comes with all size pillows. While CPAP PRO comes with 'standard' size pillows which they say fits 99%. But, past experience usually puts me in the 1%.... have to call them to get smaller or larger, should that be necessary.
So, in my mind I had a plan that I would wait until the next Discover cycle to order the TAP PAP and next DME visit to see about the CPAP PRO...and see which works. Thinking the one I get from DME, I'm going to keep whether it works or not.....'cause before TAP PAP, the plan was to make it work no matter what.
But, then yesterday I noticed that I had gotten an email the day before titled "CPAP PRO $99 Sale"....I thought about seeing if still worked....or waiting to next week, when I might stop at DME after getting my bi-weekly shot. Though a few days ago the sore on my head got really bad that I need to sleep in a different position and mask doesn't stay put in that position and... and...
Last night as I was starting preparations to go to sleep, though I was intending to complete a project involving Kdenlive but didn't start, I received a HOT phone call. Yesterday was the start of my week on call. Webmail was down for other people, not just me (which I had noticed at the time when the issue was reported to have begun, but taken as a sign to get ready to go to sleep.) The call had come in quite some time after the start of outage.
Some how during that I had scraped up my right shin, though it didn't start to really hurt until sometime later when I was showering before going to bed.
I had intended to go to bed at 11pm, but it was about 11:50pm when I actually did. Though I left my pillow alarm set to 3:00am and 7:00am. Being on call, I had work phone next to pillow alarm as well. I took my first dose, and it seemed that I was out pretty quick. Because, I was woken around 12:15am by a call asking for a status update. Which I had apparently answered, without realizing it though I hadn't said anything on answering. I also hadn't taken my cpap mask off, but I managed to get words out that to me didn't sound too badly distorted. Was reminded that it was policy that I be harassed every hour for status updates, even though we're just the messenger for this kind of outage so there isn't any change in status until we get one from the service provider. And, service provider has a service desk that adds another hop in the chain so calling in new incidents to find out status does nothing.... But, I instead was informed that help desk had only received one call in the last hour and things appeared to be working from the operations center, so they call again just before closing operations for the night at 2am, and then wait until morning.
Well, around 1:46am I had vague sensation at first that something was pulse vibrating near me. Pillow alarm is continuous vibration, phone is pulse vibration. I could see that it was operations calling, but I found that I couldn't move. Yeah....sleep paralysis was paying me a visit.