Tags: xyrem

RIP: Peter Hsu - 1920-2013

Earlier this month, I took a little staycation (during which I did my "Narcolepsy: Not Alone" photo)...didn't get all the things that I wanted done, and watched even less TV than I do normally. During this time, I didn't check my 'work' email accounts (including the gmail account that I had associated with my work smartphone, which I haven't had one for a long time since I opted to downgrade to a basic prepaid phone on my own dime.)

When I returned to work on August 12 and started catching up on my email, I found a bunch of emails from my cousin June. My grandfather likely passed away due to sudden cardiac arrest Friday night (August 9th, 2013). He wasn't discovered until Saturday morning, slumped over in his walker, when my grandparent's helper showed up. He was 93 (June 12).

Guess there were other emails to my other gmail account (from my parents), but that account has become overrun by emails from places I've shopped and many discussion groups. Need to make more filters to clean things up.

Anyways, I was in shock. I was quite close to him, he's in many of my early childhood memories. Perhaps because he was the other tall person, we shared some common interests (namely photography and home stereo) growing up and he facilitated my growing interests and lead me in how passionate I am in those areas. Which has led me to being equally so in many of the other areas that I've gotten into both personally and professionally. I'll probably never have the a home stereo system like the system that drew my attention in Taiwan, Photography continues to be a part of my life despite it becoming harder and harder to do. It was how my tremor was making it difficult to enjoy my Photography hobby that had led to the diagnosis of Essential Tremor, not that it was making it hard to do precise mouse clicks at work. I've never really been a big GUI person....and as my Tremor progresses, its not likely to change....

While I hadn't seen him since 2010 when I visited him for his 90th birthday, which as it happened was also during an email move at work. In my mind there was that there ought to be a family reunion in 2015 for my grandparents 75th wedding anniversary (and 95th birthday), where we haven't had much of a family reunion since my aunt Clara had passed (in 2004). There was also the thought of a reunion in 2020 for his 100th birthday.

That makes 2000 our last family reunion (and my first cruise), which was for my grandparents' 60th wedding anniversary and my grandfather's 80th. We did try to have a reunion in 2005 (my third, and final :?:, cruise)...but no Leo, Cathy or Charissa...and my grandparents eventually backed out. They haven't been into air travel for some time, and we weren't able to find a cruise around Los Angeles. We settled on one started/ended in San Diego with arranged car service to transport them to and from the port. Still it was a good cruise, even though I was flying back to so that I could be laid off from my previous job on Christmas Eve.

Then some guilt crept in as I then became angry that I didn't know about his death sooner. Along with trying to figure out bereavement leave policies and whether I could get an airplane ticket, etc. to attend his funeral on August 20th. I managed to mostly keep it together and push through the rest of the day at work. When I finally got home, I was starving and much sadness came in bursts.

Eventually, I call my parents to find out what travel plans they had to give me an idea of what plans I should make for my trip. And, then it was to see about finding an airplane ticket....I had been combing sites earlier looking for tickets for other upcoming trips, like NN Conference in October and Chicago Tardis in November. Which I probably should pull the trigger on purchasing soon, but there's a staging of when I purchase such things to manage the hit on my credit cards....

After some playing around, I find a combination of flying in the morning of August 20th and flying back on the 21st for $440...with ATL being around $470 and ORD being around $415. But, its only for a specific flight out of MHK and a specific flight back to MHK. Moving to either side, practically doubles it.

Also, I had to leave the booking with no seats selected, because the only seats it says are available are preferred or extra room seats, so two levels of extra charges. So, I left it to see what it would do when it tickets, which isn't until the next morning. It has seat assignments for MHK to DFW and DFW to MHK, but neither of the LAX flights have seats.

Should probably get to buying ATL ticket soon (now), though was considering buying ORD first given the notes of only a few seats left at the lowest price.

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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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Last night Sleep Paralysis came by for a visit

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. :wave:

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Saturday at the 27th Narcolepsy Network Conference

Woke up earlier than I had intended, due to sleeping to the end of my first dose of Xyrem and then triggering a the release of rain out. Force me to get up. I then killed the rest of the morning journaling and facebooking until it was close to time for breakfast.

Breakfast was good, and I was able to pop back up to the room before introductions for a bit. And, then it was introductions and Keynote by Dr. Mignot...which was pretty interesting stuff about the further developments and research into the autoimmunity and genetics of Narcolepsy, the H1N1 connections and the special cases on increased Narcolepsy cases. The basics was that version of the H1N1 vaccine was that it was a weaked H1N1 live virus plus a agent to boost immunity....which likely lead to a boosted auto immunity action. But, that there was also a spike in Narcolepsy cases in other parts of the world, suggesting that the H1N1 itself also caused. And, then some more stuff about the Hypocretin, which included points about the low cut off...which he touched on briefly in the Keynote, but expanded on a bit more in the Q&A session later.

There maybe be hope yet....

But, before the Q&A session with Dr. Mignot, I caught the Update On Nuvigil session. Which wasn't as great as the Nuvigil presentation that was done in DC, but interesting on other fronts and its Q&A. Largely because it was given by the medical director of the division of TEVA that now has Nuvigil through TEVA's acquisition of Cephalon. But, he did go into the fact that its mechanism of action isn't understood, and the extent of the testing that Cephalon had done on Nuvigil...which explains why it doesn't necessarily work as well as Provigil in others, etc. Basically that no head-to-head trial was performed, just mainly to testing to show that its plasma concentration translates to being longer lasting.

So, then I listened in on the Q&A session with Dr. Mignot, and then it was time for Lunch and Membership meeting. Which was kind of small, and not that special....and more into its presentation....though dessert was nice, though they wouldn't bring out dessert for the people that had to leave early, like entree was barely on the table when the support group sessions were starting... Plus I'm sure other's would've just liked to have had the extras anyways...since they were probably paid for whether they were brought out or not.

But, staying the end covered the important detail.....next year's Narcolepsy Network Conference will be in Atlanta, GA. Already thinking about what I should do to start saving for it. Plus, I'm starting to think that maybe my first year experience on conference committee hasn't been as bad as its been. Though that just be the Xyrem helping the EDS. It was pretty painful being on the calls before Xyrem, I'd be wanting to be in bed before the conference call and likely being in bed if it weren't for the call.

There was then a Nap Opportunity after lunch, I had intended to do by popping back up to my hotel room, except when I got up there, housekeeping was working my end of the floor. So, I ended up just brushing my teeth and taking another stim. Which pretty much got me through all the way to the end of the day. Though I also did take a load off for bit. Which also helped.

In the afternoon, I caught The Over and Under Diagnosis of Narcolepsy, which was interesting, especially on some of the cases that were presented. Though I got to wondering, what if while I was living in Dublin, Ohio....I had gotten referred to him for evaluation....would things be same/different/better. And, why such a thing never came up.

I thought about asking that after the session, but I wanted to catch the Xyrem Q&A session after his. So, I went back to find a new seat and listen in. And, I think I learned a lot from the questions raised by other people, and the session continued out into the hallway afterwards...where I got my chance to ask my questions and get answers....in the end I think I learned some useful facts on how Xyrem works and things I can do to help improve the balancing of side effects and efficacy, as well as something thing to consider on the management of my other problems.

This of course, meant that I missed the final session...which would've been the Dietary & Environmental Strategies for Managing Narcolepsy Symptoms. So, I got in some socializing, and getting ready for the Dinner Cruise on the Nautica Queen.

Where I was kind of questioning why I had gone with the Dinner Cruise, given its length and such....but it turned out to be a good time with food and good conversations.

But, now its time for bed...and tonight I will try to get in two doses before breakfast at 7:45 am -ish.

My first trip since starting Xyrem

I mostly survived.... I flew down to DFW to take care of some business at the DHS Global Enrollment office. Having used the Global Entry benefit of my Amex card. Wonder now if I should add Nexus.

And, I was surprisingly awake and productive through most of the trip. Despite being out of my Dex, was supposed to hear about a refill script though had canceled my appointment for having to go out of town for an emergency... guess nobody else there has come through on writing the script for him. Though don't know if the 12-hour decongestant on top of my Nuvigil helped or not. In past trips, I could sleep most of the flight away even though I had taken my Nuvigil and a 12-hour decongestant. This trip...there was still the uncontrollable desire to sleep during take off, which I gave into on the way to DFW...but didn't on the way back from DFW. Otherwise I was awake and productive during the trip.

Though I had originally intended that the productive time would be used to finish some of the many draft posts languishing on my main blog, I spent most of it back filling this site scattered posts along my journey so far.

It was really nice finally using another benefit from my Amex card...."Airport Club Access Program". Certainly made a big difference being able to sit in the Admirals Club working on my computer than if I had to sit in the noisy, busy main terminal space, next to whatever outlet I might find.

In the end, the only problem was that the total trip was a bit longer than 12 hours....and the decongestant gave out somewhere into taking off on the way home. I could feel the pressure building in my head as we got closer and closer to home. Wonder if the light supper before was a problem. I never did pin down what foods in the evening lead to congestion and such. Usually I don't eat at the airport at this time, but I wasn't going to eat after I get home like I normally do. Was worried that I might blow an eardrum like I did back in 2005 (flying back from an interview with Yahoo! Mail). Fortunately, landing in Manhattan restored the balance. Wonder what I should do now that I'm home.

The other thing I did different this trip, was using BlackCarMHK. Which was really nice....got to the airport way earlier than I needed to be, especially since I didn't have a bag to check...which I will in my future trips. And, it was definitely better for the trip home than I've ever had to go through. That part definitely makes it worth it for flying out of MHK. They also do airport transfers with MCI, and I'm certainly tempted to consider them should that need arise. They also do Wichita, which may have possibilities. Plus who knows what else there'll be that isn't an airport to consider.