Category: "Narcolepsy/Cataplexy"

Narcolepsy: Not Alone -- Time to put Kansas on the map. #narcolepsynotalone

This has been kind of a strange weekend.... but it all started on Thursday, July 25th, when I got a Facebook invite from Julie Flygare to some "Narcolepsy: Not Alone" Event....

Reading the details about it...it seemed complicated, since I'm still alone....but I soon decided that I was going to do it and starting putting the plan into motion. And, I knew just the gadget to help make this possible....on July 28th, I remembered to go online to look for it. Fortunately, the first place I thought of had it...though sadly its no longer available: http://photojojo.com/store/awesomeness/collapsable-camera-extender/ (unless it comes back...)

Free shipping gave a range 10-15 days (Aug 7-12?), though in reality it didn't take that long...arriving on July 31st....just under 1.5 days in shipped to delivered.

I then worked on the other details of my plan. I was going to start with the provided sign with a small tweak....though the sign is centered, so I needed to move the text up a bit to make the tweak fit. I wanted to drop a safezone symbol onto it. Though finding a safezone graphic was harder than I thought, but eventually I found something. I used gimp to lay the images together and printed it out.

It looked good, though the "Narcolepsy: Not Alone" was kind of light. I figured I would just need to reprint it later using high quality mode on my inkjet printer. The next step was to figure out when I would actually take this picture.

Lawrence Chen -- Narcolepsy: Not Alone in Manhattan, KS

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Narcolepsy Infographic

Narcolepsy Infographic: What is Narcolepsy?

Not everything that ails me is directly from my sleep disorders.

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.

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Meanwhile, I just remembered to pledge for birdies....

Link: http://www.nicolejeray.com/pledge-now/

I just remembered to pledge for birdies again with Swinging for Sleep for 2013. I'm sticking with $1 per birdie....

WUNners Safe

Link: http://wakeupnarcolepsy.blogspot.com/2013/04/wunners-safe-after-marathon-tragedy-we.html

Just read that all the WUNners weren't near the blast site at yesterday's Boston Marathon. Still makes for an emotional day on many other fronts.

This was the first year that I donated to this.

Marathon donors contributed more than $52,000 towards Narcolepsy research.