Happy Haunting

Old Song of the Day

Truly Frightening

"There may be there is dysregulation of blood sugar control but we haven’t looked into it."     -Dr. Mignot

Either way, intentional or incompetent, this surely disqualifies him as being truly interested in our welfare- our blood sugar regulation problems are obvious to anyone.  This is a doctor who's been following his own obsession while ignoring our complaints, his own eyes and the scientific data for twenty years.

Please Don't Feed the Blood Sucking Vampires and Brain Eating Zombies.

Boycott Stanford Sleep Center and their Narcolepsy Brain and Blood Banks.
 

Silliness

Joss Whedon Warns that Mitt Romney Could Spur Zombie Apocalypse

Yo Glenn

Lou Malnati's Voted Most Life-Changing Pizza

Can a pizza change your life?

Apparently it can, if you're talking about an institution like Lou Malnati's. According to an Esquire poll, Malnati's makes the most life-changing pizza in the country.

The Chicago restaurant barely eked out its victory in the reader-based survey, winning by a paltry 0.6 percent. Gino's East also has reason to brag, coming in fifth place.

The first Lou Malnati's restaurant opened in Lincolnwood in 1971 and has expanded to 34 locations in the Chicagoland area.

Former Chicago residents, including celebs, have been known to have the pizzas overnighted to their homes.

Heh.  That is the pizza I grew up on.   My sister and I have been sending these to eachother on holidays since they started doing it.
AND, they have a gluten free low carb version.   Can I get an Amen.

Lingering Thoughts

I don't know how to explain what it is like for me to be at that conference.

Ordinarily, my mind is like an old style slot machine. I have three gears running in there looking for matches. It's sequential and regular and it's kind of background noise to me now.

But when I get into a group of people I have new data streaming at me from every direction. Being in an ordinary crowd is unnerving- being surrounded by narcos is like having a pinball game in my head. 

I tried to stay focused and not freak out or cry.

There was an auction and one of the members donated a white satin pillow with nails glued all over it.

I now wish I had a picture of it, but it made me run out of the room.

I would literally shout out in my sleep or quiet moments. And I found it very difficult to stay on track. I stammered a lot, and can't remember anyone's names.

I don't know if you watch the TV show True Blood- I only watched the first few episodes. Sookie , the female lead, can hear other peoples thoughts. That's how I feel when I'm with y'all.

Walking the corridors and seeing your exhausted eyes is nerve shattering. And those of you that are the sickest, I hear you the loudest. I can see you walking with death and it paralyzes me. I cannot speak to you. And maybe it's better I can't because I would probably just frighten you. I don't know what to do. I am my own worst enemy. I'm so sorry. Please forgive me. I do what I can.

Conference Pics

I put some up here.  

Conference Debrief- General Notes

Campus-   Being on the Cleveland Clinic campus was kind of like going into the future. Very Big Science.   There were giant green glasss medical buildings interspersed with century old stone churches. They had an awesome acrylic fountain in front of one of the buildings that I'm still not sure how it works. There were glass bridges going over the streets between most of the buildings. Our hotel was connected to the surgery center so people could just come straight from outpatient procedures.

I kept thinking that if someone were creating the Matrix it would be in one of those buildings. Kept checking for people in matching jumpsuits coming to strap me to a gurney, whisk me off to a lab and plug me into a pod or something.

Venue-   The Intercontinental hotel and conference center were very nice. I stayed in the satellite suites and my room was spacious and very well appointed. The shuttle bus service was divine, and all the staff were very accomodating.   It was especially nice after having my brain scrambled by all the bells and sirens in Vegas.  I did not like that my hotel wifi access did not work in the conference center though.

Narcolepsy Network-   The NN people did a lot of work scheduling and coordinating everything. They did a hell of a lot of pile management and traffic control. I have major issues with the food and information that were supplied, but the logistics were better than one would expect from a bunch of cranky narcoleptics herding a bigger bunch of cranky narcoleptics. It was kind of amazing that it worked at all.

(*Major problems with food. Yeah- I really can't stop other people from eating free dessert all day every day, but that buffet lunch did not have one gluten free item. I kinda expected that. However there was not even any coffee. Complete fail.   Special kudos to the hotel restaurant staff who comped me a couple cups from their coffee bar.   I must have looked desperate.)

People-   Special thanks to Christina for keeping me social and engaged.

We got to meet some of the presenters and tried to talk to as many narcos as possible. There were a couple of other GFPWN there, but we didn't have a meetup. It seemed more important to find new people. I think I heard there were 320 attendees.

I find it hard to talk to people, so I just go with my gut and look for nerds. I found a few people in lecture sessions and some of them were interested when I mentioned using diet instead of drugs.

Christina makes friends with everyone and Saturday night we went out on one of the dinner busses with a whole group of people. It was great fun, and one of the guys even pulled up my video on his phone. He didn't believe I was crazy.  Ha.  No really, for once it was kind of fun to be a zombie.

Coventry street was really cool and there were lots of great shops. I found my childhood thermos in the vintage toy store.

I met a narco dental hygienist, and a GF girl from Seattle! Yay- I really hope she will help me start a local group. I can't seem to do it on my own. People actually took our advice and attended some of the sessions we recommended. The diet ones, of course. Thanks you guys, I hope it was useful.
Since it was a hospital, there was a bus to smoke in.   I went in there and gave a little talk on e-cigarrettes to a few ladies.   Someday maybe I can offer a "reality based nicotine therapy" lecture.

And the zombie guy, the one with the half closed eyelids, yeah he's totally on board already.

Despite the fact that I'm antisocial and found it exhausting, I really do wish I would have had more time so I could have talked to everyone. That's kind of incredible.

pics coming soon.

Just in case

You want to live vicariously through me-
Washington has vote by mail and I just sat here at my kitchen table and voted to legalize marijuana.

I always wanted to do that.

Act now! The Nov. 1st deadline is quickly approaching.

Join me: Urge FDA to include Narcolepsy in new patient-focused initiative

Please help get narcolepsy research out of the clutches of the pharmas.

How and Why

Did you know-   the cost to produce a month's worth of Xyrem is about $30?    Including all that marketing and donations to "Patients' Associations".   It's a common industrial chemical, very much like alcohol.

Explains a lot, doesn't it?

Conference Debrief- Lecture Sessions

Here's my review of the meetings I attended.    More general highlights and some pics coming soon.

_________________

Friday night was the Cake Reception. I missed most of it. There was a few carbalicious crumbs left by the time I got there. I went around the room looking for familiar faces but only found a couple.

The Saturday sessions started with a breakfast and presentation by Dr. Mignot.

I wish I could have taken pictures of the things people were eating. It was both spectacular and heartbreaking, watching the vast amounts of sugar coated gluten being devoured. (I also wish I could have captured the sneers at my plate of bacon.)

The Very First Announcement:

"The first order of business is to thank Jazz Pharmaceuticals for their generous financial support. They make this conference possible."

The Introduction:

"Here is the guy we are counting on to help us.“

Hoots and hollers from the audience.

New Developments in Narcolepsy Research Genetics and Autoimmunity- Dr. Mignot

This was basically the same information he gave when I saw him four years ago. He skipped a couple slides and added on a few new things, but it wasn't strictly about new developments. He went over the history of finding orexin and showed the video of the dogs and how they now know that narcolepsy is not a specific orexin or orexin receptor mutation in humans.  That it is instead correlated with DQB1-0602 in the HLA portion of the genome which codes for immune proteins.

About this time the audience started falling asleep on the great man. They clearly dropped off in direct proportion to the amount of pastry on their plates.

The new information he offered fell into two categories.

First that maybe narcolepsy is a progressive disease. Not a specific one time cell loss.

- He noted there are about 10 different HLA genes associated with narcolepsy, not just DQB1-0602.
- Some people have partial orexin cell loss.
- Some people really do have narcolepsy without cataplexy.
- And of orexin deficient patients w/o C: 50% will develop cataplexy within 30 years.

He actually even suggested that Narcolepsy may be similar to Celiac Disease. Progressive cell damage with varying amounts of pathology and symptomology in each individual. My left eye started twitching and I thought my head was going to explode...

The new data on the Flu vaccine and Narcolepsy.

- He went over the increased incidence of narcolepsy after receiving the H1N1 vaccine. How is it associated with a specific co-factor used to increase the immune response. And that somehow this overactive immune response seems to have triggered the onset of cataplexy in children.

- He also gave the results of his own department's study that the same thing happened in China from H1N1 infection rather than the vaccine.

- He now believes that the flu virus is possibly the trigger for Narcolepsy. He is wrong, but I'll discuss that in another post. (here)

He then went on to the topic of Orexin related drugs. That there are two types- things that mimic orexin in the body (agonists) and things which block orexin receptors (antagonists).

- Drug companies have rushed to make an antagonist because insomnia is much bigger market than narcolepsy.

- His interest is in creating an orexin agonist. A drug to replace our missing orexin.

“I will make it happen."

Big applause and hoots. That woke people up.

I won't even get into the selective science right now, I just want to say that after all these years one would think he would put more effort into his slides. Copying technical diagrams straight from journal articles for cognitively impaired people is lazy and anti-informative.

Follow up QnA session. A separate meeting in another room.

This is where he tried very hard not to say the orexin drug is the ONLY thing he's interested in.

• "There may be there is dysregulation of blood sugar control but we haven’t looked into it.
• We haven’t done any systemic studies”
• "Transplanting living orexin cells into the body might be like giving you cancer."
• “There is only a remote possibility (5%) of inactivity vs. orexin cell loss."
• "Nobody knows what to do with NwoC narcoleptics, including myself."

He got a standing ovation for this.
 

Dietary and Environmental Strategies for Managing Narcolepsy Symptoms     Dr. Iris Bell

This was my favorite lecture. Dr. Bell is an expert on chemical sensitivities and had a lot to say about food intolerance.

She noted the many metabolic symptoms of narcolepsy, and compared them to her patients with food allergies. One of the most fascinating and important things she had to say was that animals tend to crave the foods they are sensitive to. So if you are sensitive to nuts, the reaction causes a deficiency which makes you want more nuts. Sugar is especially effective in this regard. And she elaborated quite a bit on how sugar promotes addiction to amphetamines. 

Minus points for being a video conference and my disappointment at not being able to speak personally with this brilliant woman. I may go to Arizona just to do so.

Intro to Integrative Medicine      Rubin Naiman Phd

This guy put up an "Anti-inflammatory" food pyramid and I had to leave the room.   Glad I did.  Don't know whether I would have screamed or cried. Apparently the rest of the lecture was about yoga and chakras and inner healing or something. Something that makes a lot of sense to cognitively impaired people on powerful drugs.

Body Weight regulation in Narcolepsy, Clinical implications    Dr. Devandjan Sikder

This was a great lecture. Dr. Dev has shown that orexin deficient mice produce abberrent brown fat.

Brown fat is sort of the opposite of white fat, the stuff we hate. Brown fat actually burns energy and increases an animal's basal metabolism. A lot. He has shown that orexin deficient mice produce brown fat in which the mitochondria do not mature, so it atrophies and dies. This is correlated with a disproportionate weight gain when they are put on a high calorie diet. He had several permutations of the experiment also showing that when given Orexin, the animals gained brown fat and lost weight.

Although I disagree with him regarding the underlying mechanism of this pathology, I especially appreciate that he explained to the audience that their metabolism really is messed up and that there is a reason they seem to gain weight uncontrollably and can't lose it. He showed clear evidence that orexin deficient animals actually eat less and weigh more.

He did a good job navigating the fine line between technical information and a cognitively diverse audience.
Special bonus points for good graphics and a sense of humor.

Generation of Hypocretin Neurons from Human Skin Cells - Dr. Florian Merkle

This was another great presentation. Dr. Merkle is figuring out how to make orexin cells from human skin tissue. This is important because it's been hard to study them. As he said- live narcoleptics either don't have any or won't donate them for some reason.... Ha. Anyhow, he showed us his evidence that he has produced functional orexin neurons in a petri dish, and it looks good.

The obvious implications of this ability are huge.  Creation of both normal and narcoleptic orexin neurons to test and compare. Possible orexin production and harvesting. Possibly orexin tissue transplantation (He clearly countered Dr. Mignot's assertion that live cells would grow and create cancer. Neurons don't divide.) And of course the audience picked all that up right away. Unfortunately this was a preliminary presentation and it will all have to be validated and perfected and he cautioned everyone that it will probably be a decade before that stuff becomes possible.

Nonetheless, pretty effin cool, dude. Thanks.

Bonus points for clarity and infectious optimism.

You totally deserve the Researcher of the Year award. Congratulations.

Narcolepsy and Depression    Dr. Douglas Moul

I kind of feel bad for this presenter.  Although a "Sleep Psychiatrist"-  he's a specialist in insomnia, and  seemed rather out of his comfort zone in a room full of narcoleptics after lunch.   He basically recited the known data, and told us a couple anecdotes about a few patients. He then gave us his opinion that yes, depression in narcolepsy really is more than just feeling bad about the disability.

His audience already knew that.

______________________

As you can see- I only attended scientific sessions. There were a lot of other meetings I didn't go to. Mostly because they were advice for actively sick people. Presentations on the drugs and symptoms and "living well with narcolepsy"- everything they wouldn't need to know if they had the right information. There was a lot of spiritual stuff too- dreams and art and poetry and yoga. 'Coping strategies' that make me want to scream. But I must say, the science was better this year.

One of the last sessions was about how to talk to your doctor.

Someday I'd like to see the presentation about how not to need a doctor...

_____________________

All in all, I am more convinced than ever that Dr. Mignot was right about one thing-

“We are at a moment when things are going to change.”
  

Damn straight we are.

Put your money where your mouth is

Gluten-free food market is estimated at $4.2 billion this year

The market for products without the gluten protein — found in wheat, barley, rye and some other grains — is valued at $4.2 billion this year, according to a report from Packaged Facts. Since 2008, it has grown at a compound annual rate of 28% and is expected to exceed $6.6 billion by 2017.
Gluten-free snacks and granola bars make up the largest chunk of the industry, accounting for 15% of sales, according to the report. The vast majority of beers also include gluten.
But this year, nearly 2 in 10 U.S. adults are avoiding such items. Some 18% of adults are going gluten-free, according to Packaged Facts, up from 15% in 2010.

A View of the Vortex

I need to buy some time.   Got home at 2 am and couldn't sleep.  Had to do some stuff for my neglected husband and dog today.   Will probably write tonight.

A song for the narcos in Cleveland.

Travel Day

My brain hurts.   Will tell you about the conference tomorrow.
In the meantime-  you really should prepare for the future.

Products for the Zombie Apocalypse

Old Song of the Day

Caterwaul

Pay no attention to the Man behind the Curtain

We're off to see the Wizard. 

Glorious details sure to follow.

Well how about that

Christina and I are at the conference.   Going  to the cake reception in a little while...

But look who's giving a talk on "Body weight regulation in narcolepsy"-

Devanjan Sikder PhD

Sikder began investigating how orexin—a hypothalamic neuropeptide—regulates metabolism, sleep patterns and feeding behavior, and the role that hunger plays in the regulation of fat metabolism and insulin secretion.

“Orexin agonists and antagonists have immense clinical implication for narcolepsy, insomnia, eating disorders—anorexia, bulimia and Prader-Willi syndrome—and even addiction,” said Sikder, DVM, PhD, an assistant professor at Burnham Institute for Medical Research at Lake Nona specializing in genetic engineering. “Orexin improves glucose sensitivity by stimulating glucose dependent insulin release from the pancreatic beta cells, and at the cellular level, augments the mitochondria’s ability to burn sugar and enhance basal energy expenditure. Using genetic, genomic and biochemical tools, we’re trying to understand biochemical attributes defining sleep, wakefulness and hunger.”

Looks like I won't have to tape my mouth closed after all.

Sleep and Memory

From the Twitching Whiskers of Babes: Naptime Behavior Shapes the Brain

The whiskers of newborn rats twitch as they sleep, and that could open the door to new understandings about the intimate connections between brain and body. The discovery reinforces the notion that such involuntary movements are a vital contributor to the development of sensorimotor systems,

As I was saying- database maintenance. 

Cha Ching

Over a hundred members in the Gluten Free PWN group!
Kick Ass!!!!!!!!!!!!!!!!!!!

But the Doctor said...

Study Questions the Value of Annual Physical Exams

When researchers compared the number of deaths between the group that got regular physical exams and the group that only saw a doctor as needed, there was essentially no difference.
On average, about 7% of people died in each group over the course of the studies. That was true even when researchers looked at deaths from cancer and cardiovascular disease, which are thought to benefit from early detection and treatment.
Perhaps unsurprisingly, people who saw a doctor on a regular basis were more likely to be diagnosed with conditions like high blood pressure and high cholesterol.
Some studies found they were more likely to be treated for those conditions, too. Out of four studies in the review that looked at drug use, two found that people who got regular physicals were more likely to be prescribed drugs to treat high blood pressure, for example.
There was a trend among studies for people who got regular physicals to feel healthier than people who did not, but researchers say that finding is unreliable. There were no apparent differences between groups on hospital admissions, worry, referrals to specialists, or disability.
“In the absence of documented health benefits, we would say there’s a risk of overdiagnosis from this,” Krogsboll says.

The bright side of Zombies

Kids at risk for eating disorders have higher IQs

Children at high risk for eating disorders demonstrate significant cognitive differences from those at lower risk, according to a new study published in the journal Psychological Medicine. Researchers at the UCL Institute of Child Health (ICH) drew from a study of 6,200 children between ages 8 and 10 and they discovered that those with a close relative with anorexia on average have a higher IQ and better working memory (the ability to temporarily hold and process useful information).

But we all know that already, don't we?

Brain Eating Zombie of the Month

Here it is- his latest article.
He's doubling down.

A Practical Guide to the Therapy of Narcolepsy and Hypersomnia Syndromes.
Mignot EJ.   Stanford Center for Sleep Sciences and Medicine,

Abstract-  Narcolepsy and other syndromes associated with excessive daytime sleepiness can be challenging to treat. New classifications now distinguish narcolepsy/hypocretin deficiency (also called type 1 narcolepsy), a lifelong disorder with well-established diagnostic procedures and etiology, from other syndromes with hypersomnolence of unknown causes. Klein-Levin Syndrome, a periodic hypersomnia associated with cognitive and behavioral abnormalities, is also considered a separate entity with separate therapeutic protocols. Non hypocretin-related hypersomnia syndromes are diagnoses of exclusion. These diagnoses are only made after eliminating sleep deprivation, sleep apnea, disturbed nocturnal sleep, and psychiatric comorbidities as the primary cause of daytime sleepiness. The treatment of narcolepsy/hypocretin deficiency is well-codified, and involves pharmacotherapies using sodium oxybate, stimulants, and/or antidepressants, plus behavioral modifications. These therapies are almost always needed, and the risk-to-benefit ratio is clear, notably in children. Detailed knowledge of the pharmacological profile of each compound is needed to optimize use. Treatment for other syndromes with hypersomnolence is more challenging and less codified. Preferably, therapy should be conservative (such as modafinil, atomoxetine, behavioral modifications), but it may have to be more aggressive (high-dose stimulants, sodium oxybate, etc.) on a case-by-case, empirical trial basis. As cause and evolution are unknown in these conditions, it is important to challenge diagnosis and therapy over time, keeping in mind the possibility of tolerance and the development of stimulant addiction. Kleine-Levin Syndrome is usually best left untreated, although lithium can be considered in severe cases with frequent episodes. Guidelines are provided based on the literature and personal experience of the author.

And exactly when have you had even one person recover?

I notice you're still covering your ass with the Type 1 Narcolepsy classification crap.
Funny how I know all kinds of narcoleptics and hypersomniacs getting better without drugs.

Do the Math

Cholesterol Levels Dropping in U.S. Adults, Mostly From Statin Use

A comprehensive look at how Americans are faring in the battle against coronary artery disease shows that over about 22 years, total cholesterol and LDL (low-density lipoprotein cholesterol, often called "bad" cholesterol) have declined. But the percentage of adults taking anti-cholesterol medications has climbed as well.
Total cholesterol, on average, declined from 206 milligrams per deciliter (mg/dL) in the 1988-1994 survey to 196 mg/dL in the 2007-2010 survey, the investigators found.
The percentage of adults taking lipid-lowering medications climbed from 3.4 percent in the 1988-1994 survey to 15.5 percent in the 2007-2010 survey.

Yes, but heart disease has not subsided, and obesity has skyrocketed.
And that is because neither one has anything to do with serum cholesterol levels.

As I was saying

Creativity 'closely entwined with mental illness'

Writers had a higher risk of anxiety and bipolar disorders, schizophrenia, unipolar depression, and substance abuse, the Swedish researchers at the Karolinska Institute found. They were almost twice as likely as the general population to kill themselves. The dancers and photographers were also more likely to have bipolar disorder. As a group, those in the creative professions were no more likely to suffer from psychiatric disorders than other people. But they were more likely to have a close relative with a disorder, including anorexia and, to some extent, autism, the Journal of Psychiatric Research reports.

Jet Lagged

Lack of sleep can seriously affect metabolism

The changes were huge: After sleeping four hours a night for four nights, the subjects' whole-body insulin response decreased by an average of 16%, and the fat cells' insulin response decreased by 30%. The researchers say that those levels are akin to the levels seen in diabetics or the obese. And when the team looked at the biochemical markers of an insulin response in the fat cells they removed, they found it took three times as much insulin to cause a normal response after four nights of limited sleep.