Tags: hypocretin

Possible treatment for Alzheimer's from the world of #narcolepsy?

While, I was passing the time on the journey home, I was catching up on #nnden14 tweets. One of which was this one:

To which I first wrote this as as response….

But, discovered that my second response never left my phone….which was:

@kimberlyratliff Or better yet, I wonder if the people working on the Orexin Antagonist for Insomnia, might lead to it being a treatment for Alzheimer’s dementia patients?

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.