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.
...though I don't know why, but hope that I'm not in the 11.5%
This all started when I had a January 13, 2011 appointment following my PSG/MSLT of December 2&3, 2010. The finding of the MSLT was 'normal', and there was no room for discussion or questions on it with my sleep doctor. But, while I was waiting on the MSLT results, I got a letter dated December 14, 2010 from Stanford saying had the DQB1*0602 subtype.
After the appointment, I was to get a referral to somewhere like Stanford and maybe I should see a Neurologist because maybe I'm actually have seizures and not EDS + sleep attacks. When I asked what 'somewhere like Stanford' might be, the doc said Stanford is the only place he knows so that's where. So, why did he say 'somewhere like Stanford' if he doesn't know any such place.
But, the whole Stanford thing seemed to stall after I was told that I needed to call my insurance and tell them if it would be covered...and not just let me tell them there that it would be covered. Somehow leaving and then saying that I had called my insurance was better than just saying it? Anyways, I called, and found out that it would they would be covered as an in-network provider (so even better than I had thought).... But, when I called back, the doc said that he had been thinking and probably wouldn't do the referral now.
The following week, I got a call from his office saying they had called the number of Stanford...and it was not in service, and wanted me to find out the correct number. I provided them with the number that was on their website, the URL being part of the letter that they had gotten the number they had called from. Though later it occurred to me, that Monday, January 17th was President's Day. Which was a University holiday for me, and likely was a University holiday for Stanford....and I found out that it was, and they were closed that day.
And, then I heard nothing..... I contacted Stanford a few times after this, and they average about 3 calls from medical professional each day but they don't recall having gotten any phone call from mime.
After a couple months, I decided to take it upon myself to do the second thing....and found a nearby neurologist that I wanted to see. I had first appointment with him, on March 28, 2011, during which he said he wanted to see the MSLT data for himself since it looked borderline and I finally got something for my RLS and he wanted to run a bunch of other tests, such as MRI and then he would see me in about a month and after he get's back from vacation.
On December 2nd, 2010, I went in for a PSG/MSLT. 2 years ago, on December 1st, 2008, I had gotten my first PSG.
Originally, I was scheduled for 9pm, but they moved the time up to 7:30pm...which was the same time as first PSG, though it was a much bigger inconvenience this time around. Partly because I was going to be bring more stuff with me, though it turned out that I only needed my cpap mask and not all the other stuff. But, this time I brought my own pillow...specially, I brought my Regenesis buckwheat pillow. But, the other hassle is that I don't move as quickly as I normally do, due to a broken toe.
But, I made in in time. Though I was getting pretty angry/frustrated by all the things that had to go wrong as I was scurrying around trying to get out in enough time to hobble over to the sleep lab.
The night before when they called to confirm my appointment, I finally asked if there was internet access there. There isn't, but being that I'm with K-State...I should be able to pick up the network and use that. So, I brought my laptop.
Getting wired up wasn't a huge deal, wasn't as bad as I remembered the first time being. But, I heard my watch chime 8pm while I was still getting wired up....so I guess I was going to be a little late to the Narcolepsy and Hypersomnia chat on TalkAboutSleep.com, but I made it in and hung out there until it was over. And, then it was time to get to the PSG part of my stay.
With an impending PSG/MSLT (December 2nd, 2010), and a particularly disrupted night's sleep recently...I got to thinking that I would start my sleep diary now. Rather than wait until the requested 2 weeks before the PSG/MSLT.
Of course, the sleep lab provided a sleep diary on a printed sheet to fill out. Which means either I fill it from memory now and then, or carry it wherever I go. If only there were some way to, say, use a computer....
I did a quick google search, and all I could find were PDF files. Surely somebody else has thought of this?
So, looking at the provided sleep diary sheet from the sleep lab, I sat down and created a sleep diary spreadsheet using OpenOffice....using my laptop (Ubuntu 10.04LTS) [which when at home is on futon in front of TV, but I'll be at Chicago TARDIS the weekend before the PSG/MSLT]
I opted to leave it in the default format, so that I won't have to deal with OpenOffice asking if I'm sure that I want to not use OpenDocument format.
I then saved the file into my Dropbox folder and created a link from my desktop to it. I can now update my sleep diary wherever I might be.
Such as living room computer (Windows XP Professional - OpenOffice), or computer next to bedroom (Ubuntu 10.04LTS 64-bit Server), or computer at work (Windows 7 Professional - LibreOffice).
Liking the result so much, I've decided that I should share it.