Second Major Trip, off to a bad start....

Well, I'm on board a flight from DFW to SAN for my second major flight since my Narcolepsy/Cataplexy Diagnosis....and its kind of off to a bad start.

While...the flights have been largely uneventful. There have been other issues.

In the rush for the last few steps that I need to do before I leave home, I did remember the usual like unplug hot water pot. Water plant, refill humidifier....though not the air washers. And, this time I did remember to set vacation hold on my thermostat. So first test of the days hold feature of my thermostat, meaning it shouldn't be freezing or a sauna (depending on what the weather is like when I'm away) when I get home.

However, I while in the air from MHK to DFW, it dawned on me that I didn't pack my pillow alarm. Will have to see what I can improvise when I get to hotel. And just now it occurs to me that I didn't pack my rollerpen, for writing in case my fountain pen (which I did pack) fails to make it...or runs out early. Though I also forgot to pack my (good) notebook, so I might not do much writing at all.

The other thing is that I wish I had gone to the chiropractor before this dizziness has been awful sometimes now. And, my back had started killing me on now making air travel that much more painful. Might also cut into my activities at the conference.

Meanwhile, I'm trying to figure out what kind sleep schedule I'm going to have during this conference....

But first, time for a $10 roast beef sandwich.....

Narcolepsy Awareness Week is December 1 - 7

Narcolepsy Awareness Week is sponsored by the American Sleep Association. From December 1 - 7, the ASA and its affiliates will be increasing awareness about narcolepsy.

The primary objective of this campaign is to improve the nation's knowledge about the signs, symptoms, complications, diagnosis, and treatment options of narcolepsy.


  • Excessive daytime sleepiness
  • Hallucinations when going to sleep or waking up
  • Feeling paralyzed when going to sleep or waking up
  • Muscle weakness associated with intense emotions


  • Increased Risk of Motor Vehicle Accidents
  • Difficulty achieving life goals secondary to daytime sleepiness
  • Decreased Mental Performance
  • Find Out More About Narcolepsy

Another "Swinging for Sleep" campaign has ended....


I was sure I had blogged somewhere that I had made my pledge this year....about how I had only pledged $0.50 per birdie last for the 90 birdies, my donation was $45 to Narcolepsy Network. And, that I joked that I should go with $1 per birdie...though she had said at the conference that she's planning to 'break 100' next year....

Yeah...I don't think I could 'break 100' in golf....

Anyways...when the campaign started up, I jumped in with a pledge of $1 per birdie this year....of course that was before, things all started going bad health wise this year...and to where I ran up a lot of medical bills in a short amount of time (before I would have HSA money to cover, I could claim now...but since the max I could put it was $3100, I want it for next year when my deductible will be $2500. Where it may just be that I hit it with the single fill of Xyrem in the new year....)

At least it led me to getting a diagnosis of Narcolepsy w/Cataplexy.

Which makes it good to support the two causes "Wake Up Narcolepsy" and The "Narcolepsy Network"...which as Nicole says:

Wake Up Narcolepsy is committed to finding a cure for Narcolepsy and The Narcolepsy Network helped me get my life on track after years of struggling with Narcolepsy.

Wouldn't say my life is back on track yet...but its coming around. So, I guess I'm more of a "Narcolepsy Network" supporter....hadn't heard of "Wake Up Narcolepsy" until around the conference last year....

So, this year it looks like the money is going to Wake Up I went and made my donation of $121. It'll slot in with a smattering of charges that are Black Friday/Cyber Monday &#59;D

Oh yeah...I was going to see about ordering some more cpap stuff....wonder which sites are having the good Black Friday/Cyber Monday deals on the cpap supplies I need? :hmm:

Sunday at 27th Narcolepsy Network Conference

Darn, I'm having trouble with balance today...but it always seems to take a couple of days to get my land legs back after any stretch of time on a ship. Though being some what tired might be adding to things.

Anyways...after getting up somewhere just after 7am, I quickly try to get out of my hotel room so I can make it down for 7:45am breakfast. A little late, but not a problem...there is only just a trickle of people at the start of the first line.

It was an adequate breakfast....probably shouldn't have had the eggs, not really a fan of the scrambled eggs, but just got a scoop out of routine. And, afterwards, I zipped up to the room to brush teeth and grab a few items I remembered that I was missing on the way down. The came down to catch the session of "Understanding Attention and Vigilance Issues in Narcolepsy". An interesting session, which now has me wondering about the strangeness in the field of vision test of my last eye exam. I can see things in the upper left quadrant just fine, but according to the test, I missed most of the targets in that quadrant during the test.

Though I wonder more about my perfect hearing test...I'm sure there's hearing loss, because I don't here everything (though maybe that's something else that's related)....but I was sure there were times where I made commission error responses. Its hard after a point telling which beeps are real or and which are ones my mind says happened. Though I'm sure I do it lots of times in other tests as well....especially if I'm really sleepy.

Next up was "Living Well with Narcolepsy", which I was interesting, though I'm having trouble remembering what it was that I found particularly useful at the time.

Then came the "I'm a Person with Narcolepsy and I'm Proud!" session by Julie Flygare...who finally had her moment to thank me in person for helping making it possible for her to run up Mt. Washington. And, then it was time for lunch....which was mostly wraps....which were mostly wrap, which really made a mess of my teeth, so I went back up to my room to floss and brush, but not before getting pulled into a group photo. As I was leaving I noticed people had desserts, wondered where that was....which I found later when I came back down. Wandered around a bit....and then went to the "Narcolepsy and Sleep Apnea" session. Which was interesting, though not was more about the Narcolepsy followed by Sleep Apnea....though who knows maybe that's how the conditions developed in me...but I was diagnosed the other way around, which made for the journey being what it was. But, then again, nobody seemed particularly concerned about the sleepiness all the time, or the weakness events, or the sleep attacks. And, I guess the insomnia went away when the apnea got bad enough that I had a huge sleep debt.

Where later the insomnia came back after sleep debt was repaid on CPAP....but it didn't really solve the daytime issues. Though the key triggering factor was reaching Hypertension Stage 1. Which the CPAP did help with.

Anyways...after that I wandered off wondering what the "Open Space Technology" session was about, but none of the topics really interested me...."Narcolepsy and Aging", "Narcolepsy and Migraines" and "Narcolepsy and OCD" were basically the topics, so I went off to catch up on socializing....until the final session of "Strategies & Techniques to help the Doctor help you"....which may not be help the doctor, but rather a how to work the system to get what you need out of your doctor, or how the doctor works so how to most efficiently work around that....

And, then closing ceremony this year, which was move to the Amphitheater to watch the finished Narc-umentary. Unfortunately the music track and the voice track were inverted, so couldn't hear the dialog except when it was loud or the music was quiet. Hopefully the finished version will appear in some form somewhere, it seemed really interesting. Noticed that there seemed to be quite the transformation in some of the people between when they first showed up at the start of the conference to seeing them in the video or at the end of the conference. Of course, I was a different person between the beginning and the end of my first conference.

And, then fell into a group and got supper at the Winking Lizard and then went to the "secret" room for conversation until it was sufficient late (but not really) and broke off to go to sleep. I could probably have continued on later, at least I felt like I could...but as I was walking down the hall to my room, I could feel that I might have got a little further than I should've. Or waited until the second wind....

Wonder what I'll get into on my extra day before flying home....

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 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 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.