Tags: narcolepsy network

Getting settled in Cleveland - Narcolepsy Network Conference

Well, sitting around in the airport terminal was dull, though I then remembered I had my Kindle to catch up some reading.

Soon, I was getting notifications that the 5:05pm flight to DFW was going to be delayed as well. But, 5:35pm seemed to stay....in fact, while waiting in security it was upgraded to 5:30pm. And, the wind seemed to cut 15 minutes off of our flight time. So, there was ample time to make my connection for Cleveland.

During the flight from MHK and DFW....I took a 30 minute take off nap, and then was awake for the rest of the flight, reading and re-reading the inflight magazine and skymall catalog.

Looked like that would be an on-time, until we were informed that there were two passengers still making their way through the terminals that we were waiting for. So ended up leaving 15 minutes late.

But, we went....on the flight I got a gingerale and a bag of spiced nuts. Guess that'll be it for today. I arrive at the airport, and after what seemed like an eternity....my bag appeared. And, then it was where's my transportation. I wander back and forth a few times, check information, told I probably have to call them....though they might be hard to get a hold of at this time. But, I had called ahead about the time change....and it was only about 20 minutes later than I had said. Well, the touchscreen doesn't have them, person says guess they got removed. Maybe there's a brochure somewhere. Same number...still no answer. Well, I guess I'll have to find my own way to the hotel.

Could hire a towncar, $40...cash only. Or taxi $35, will take credit card. So I go for taxi. Except that the cab starter sets me up with a taxi driver that isn't an airport taxi and therefor doesn't take credit cards. So, I did up some cash...and pay the $35 even.

Then to get settled in the room....there's a lot of work....and there's no vending machines in this hotel. Just the mini bar...can't tell what they want for cheap old bottled water. Its all wired, so if I pulled the wrong thing...I'd get charged. Looks like just fancy waters...starting at $4 a bottle and up. Check at the front desk....there's vending machines at the ER, or there is an Au Bon Pain up and over by skyway that's closer and open 24/7. So, I get a $1.75 bottle of water....

I mix it up with a Crystal Lite To Go packet (Appletini....and mix up my Xyrem) Though I end up drinking the rest of it after washing down my pills for the night. Guess I'm a little bit thirsty. Guess I'll be needing more later.

Was shooting to get to bed by 2am...but looks like it'll be more like 2:30...so that means my day won't start until 10:30? Oh well. Such is life. Thought I had packed more charging cables....and thought I had packed a full fountain pen, though doesn't look like it leaked. Guess we'll see when I update my sleep journal in the morning.

But now to shower and sleep.....

Ogden Weather Advisory....

Ogden, KS Weather Advisories, Watches & Warnings

WIND ADVISORY

in effect until Thursday, Oct 18, 7:00pm.

...WIND ADVISORY REMAINS IN EFFECT UNTIL 7 PM CDT THIS EVENING...

A WIND ADVISORY REMAINS IN EFFECT UNTIL 7 PM CDT THIS EVENING.

* TIMING...THE STRONG WINDS WILL CONTINUE THROUGH THE EARLY EVENING...WITH THE PEAK OF THE SPEEDS EXPECTED TO OCCUR THROUGH 5 PM.

* WINDS...NORTHWEST WINDS WITH SUSTAINED SPEEDS OF 25 TO 35 MPH AND GUSTS TO 45 MPH.

* IMPACTS...DRIVERS OF VANS...CAMPERS...TRAILERS...OR OTHER HIGH- PROFILE VEHICLES SHOULD BE ALERT TO THE DANGERS OF THESE WINDS...PARTICULARLY ON NORTH TO SOUTH ORIENTED ROADS.

PRECAUTIONARY/PREPAREDNESS ACTIONS...

TAKE ACTION TO SECURE TRASH CANS...LAWN FURNITURE...AND OTHER LOOSE OR LIGHTWEIGHT OUTDOOR OBJECTS.

Now I'm starting to worry more about whether my 5:05pm from MHK is still going to happen, etc.

Flying to 27th Annual Narcolepsy Network Conference...maybe

Well, I was hoping to get in with time to get some supper and a good night's rest before the conference.

But, seems everything is going wrong today.

The wake up and get ready for ride to airport wasn't too bad....in fact I was ready to go before 9am, though I had delayed the scheduled pick up to 9:30am...because they estimated time is a lot shorter than I'm used to, and they hit it quite well when I rode on October 2nd.

Finally about 9:20, I went out...remembering that they're more than punctual on pickup, they are there a bit before hand. And, sure enough a Black Car was waiting already.

But, it took a little longer than estimated to get to the airport, though still reasonable. The delay was due to different K-18 construction blocking the entrance to the airport, requiring a detour to get there.

Checking my bag and getting my boarding passes wasn't too bad, though going through security was a different. When I first started flying with CPAP, it was take it out for them to x-ray and swab. Then a couple years ago, they didn't care anymore. And, I didn't need to take it out. But, now they want it out and checked again.

Though no problems with Xyrem. That first time through.

After getting settled to wait for boarding, the PA came on to say that our plane got diverted to Tulsa, OK due to high winds...an advisory which is in affect until 7pm, i found out later. They don't know when the plane will make it in, so everybody needs to leave the security area, and check on their connections, etc.

After a lot of standing, I find that my DFW to CLE flight has been rebooked to 7:45pm...arriving 11:15pm in CLE....so I'll be lucky if I hit the hotel by midnight, etc. Guess I'm going to sleep in on Friday morning and for go the Rock & Roll Hall Fame tour....

Guess second time through security should go smoother :)

And, I guess I can get use of the Admiral's Club to pass the time in DFW.

Darn....now they've officially cancelled my flight to DFW. Well, the agent said he would hold me a spot on the next flight, so hopefully he'll make that happen.

So maybe no Admiral's Club now....but still hopefully make it into Cleveland tonight.

44 for 44

Link: http://www.razoo.com/story/44-For-44

Online fundraising for 44 for 44

For the last few years, I've launched a campaign to raise money for a choosen cause the month of my birthday. Using the Causes application on Faceobook. Until recently it has been for Breast Cancer Research. But, last year I switch to Narcolepsy. And, now it seems the Causes application has falling into disfavor, so few charities will accept donations through it.

But, this being a special year for me....the year I finally received a diagnosis of Narcolepsy and started treatments to better manage this condition. So, I did a search online, and found another site that can be used for this purpose....and created my 44 (donations of) $44 for my 44th birthday. That means the goal is to raise (at least) $1936 for Narcolepsy Network in the month before my birthday. And, the rush to implement my apnarcoplexic.com website.

It has been a long journey, from where I didn't know there could possibly be something wrong with my sleep that explains why I have all these problems during the daytime. To feeling relief when I was first diagnosed with Sleep Apnea. To learning about all sorts of sleep disorders. To becoming annoyed with "Good news! The test result is negative! We still don't know what's wrong with you and that's good." Not.

To where it seemed that I would be stuck with Idiopathic Hypersomnia (You're sleepy all the time and we don't know why.) I however, I've been told by a few people that I exhibit signs of mild cataplexy. But, that and some of my other symptoms, such as sleep paralysis and hypnagogic hallucinations, got me crazy or depressed again. That's why I wasn't going to tell my doctor that I've been having those sleep events for years. The enhanced ability to lucid dream can be kind of nice at times.

So, on May 10th, 2012, I overshot my walk home from work by landing in the ER where I was later diagnosed (on May 15th) as having had a Cataplexy attack. To most people that would automatically mean Narcolepsy... since its really rare for to have Cataplexy without Narcolepsy. But, my current PCP and Sleep Doctor weren't ready to make the diagnosis of Narcolepsy. PCP didn't want to prescribe Xyrem which is for Narcolepsy patients (with or without Cataplexy). And, Sleep Doctor didn't seem to want to make a clinical diagnosis (Diagnosis based on a study of the signs and symptoms of a disease.) So, my revised diagnosis became "Sleep Apnea and Idiopathic Hypersomnia with Cataplexy". Or, "Sleep Apnea, Depression, and Cataplexy". Where the objective diagnosis of Depression was made by using the Becks Inventory and score more than 15. While I didn't feel sad, suicidal, worthless, etc. I did score points in areas like Fatigue, Insomnia, Diminished Concentration, Loss of Energy, Worrying about my Health...all things that I would expect to score in given my current untreated and ignored state.

To this end, I was first tested on Remeron....not sure which was worse the constant flu like pain or that I gained like 50lbs. Then Celexa...which wasn't that bad in that it didn't do anything. And, then Prozac, because it could help with Cataplexy. Though I later heard that it can also make Cataplexy worse. Which it did in my case. And, when I reported this, it just made the doctor what to increase it and increase it, so I can be even worse.

Then in June the AWAKEN report came out -- Mentioned Here

And, that didn't make me feel any better...despite it explaining why I was still in this rut. Finally, I decided it was time to see a psychiatrist again. In the mid-90's, I was prescribed Serzone by my family doctor and after a long process (including where my doctor threatened a forced commitment for asking to stop taking the poison) saw a psychiatrist would said I didn't need it and ended that. A few years later Serzone was withdrawn from market for Hepatotoxicity. I was contacted about joining class action suits, but by then I had moved on.

At first I had visits where a psychiatrist told me that if I had walked in off the street, he would not have diagnosed me with depression. But, since my sleep doctor had made the diagnosis and was convinced that its what's causing my continued problems. I would stop taking the antidepressant that isn't working and later try another popular one. Well, I do own stock in company that makes that one, and it has risen quite nicely in value, though it was acquired by another company which doesn't issue dividends anymore. Though I did come across the tidbit that they are the company in Canada that distributes Xyrem.

Eventually I saw another psychiatrist would reviewed my previous MSLT and other notes and said they support a diagnosis of Narcolepsy. (my current sleep doctor had also said the MSLT would support a Narcolepsy diagnosis, but then had me spinal tapped to exclude the diagnosis.)

The spinal tap is a research study, where they've determined that if you have low or no Hypocretin then you are 99+% to have Narcolepsy with Cataplexy. But, if you have Narcolepsy with full Cataplexy, only 88.5% are of the low or no Hypocretin variety. This is based on the Narcoleptic dogs lacking the receptors for Hypocretins. But, there really isn't really a safe way to scientifically test for the lack of the receptors in live subjects. Others have reported that in expanding the test to all kinds of Cataplexy and those without Cataplexy...the test is ineffective or about 50-50.

Both my previous and current psychiatrist have said that Narcolepsy is largely diagnosed on a clinical basis. And, my current psychiatrist gave me the, "If it looks like a Duck, If it quacks like a Duck, Then is is mostly likely a Duck called Narcolepsy" on July 12, 2012. We talked a bit about the MSLT results and what meds I was on and that none of them were discontinued in advance of the test... there was a study somewhere noting that NE uptake inhibitors (such as Modafinil) would potently reduce REM sleep (in Narcoleptic dogs.) And, then it was some words about Xyrem.

I started Xyrem on July 26th, 2012.

Having personally experience the lack of awareness in Narcolepsy on all fronts, it is my wish to get raise money for Narcolepsy Network who is committed to raising awareness and promoting early identification and diagnosis of this sleep disorder. And, is seeking in the coming year to expand these efforts. They want to reach more health professionals and also teachers, who are often the first to notice the recurring pattern of unusual sleepiness in children and young adults.

"When narcolepsy is recognized and treated early, there is every hope and expectation for a full, productive and healthy life."

Swinging for Sleep Campaign With Nicole Jeray

Link: https://www.narcolepsynetwork.org/get-involved/swinging-for-sleep/

Narcolepsy Network has teamed up with long time loyal Narcolepsy Network member and golf superstar, Nicole Jeray, LPGA Touring Pro. Narcolepsy Network is soliciting your support for a unique fundraising endeavor, “Swinging for Sleep”.

Jazz Pharmaceuticals will donate $25 for every birdie that Nicole makes on tour. And, you can pledge any amount you wish to also donate for every birdie that Nicole makes on tour. Or, just make a one-time donation of your choosing.

Personally, I've pledged $0.50 for each birdie.... :cool: