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.

Health Insurance 2013

October open enrollment time is upon us....and it looks like next year is going to be interesting.... where staying with Plan C is the way to go still though. The deductible goes up to $2500 from $1500. Hopefully Xyrem will come first and take care of it in one fell swoop. After that...the insurance pays 100% of everything for the rest of the year. And, the monthly premium is like $2.04....

One of the joys of being single, I suppose.

Kind of easier than the $1500 deductible and then some co-insurance amount until another $1500. To where they've been paying 100% since mid-May. Also the employer contribution to the HSA is done as a lump sum at the start of the year. So I should
have no problem meeting the whole deductible at once, unlike last year.

Full story »

Sleep Apnea Awareness Week - October 1-7

Link: http://www.sleepassociation.org/index.php?p=sleepapneaawareness

Sleep Apnea Awareness Week is sponsored by the American Sleep Association. From October 1 - October 7, the ASA and its affiliates will be increasing awareness about the dangers of untreated sleep apnea.

The primary objective of this campaign is to improve the nation's knowledge about the symptoms, complications, diagnosis, and treatments of sleep apnea.

SYMPTOMS of SLEEP APNEA

  • Snoring
  • Daytime Sleepiness
  • Nighttime Gasping, Choking Sensation
  • Morning Headaches
  • Morning Sore throat
  • Behavioral Problems in Children

COMPLICATIONS of SLEEP APNEA

  • Increased Risk of Motor Vehicle Accidents
  • Increased Risk of Heart Attack
  • Increased Risk of Stroke
  • Decreased Physical Performance
  • Decreased Mental Performance
  • Increased Risk of Deadly Heart Rhythms
  • Increased Difficulty Managing Diabetes
  • Increased Difficulty Managing Blood Pressure

Find out more about Sleep Apnea

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."

apnarcoplexic is born

Recently, godaddy suffered an out that disrupted numerous websites, including most of my sites. As an apology they offered a discount on renewals and purchasing of new services from them.

I contemplated extending a number of my domains, a few of which set to expire in the coming year. Though some of which I had intended to eventually have go away to make way for the replacement sites that I have been working on, or plan to work on. apnarcoplexic.com is one of those sites I've been thinking of working on.

Having figured out multidomain setup of b2evolution, with the construction of TheChens.WS
Having mastered multidomain setup of b2evolution, I decided that it would be easier to some day consolidate my multiple instances of b2evolution into this single instance. The other instance being one for Sleep Apnea and another for Narcolepsy. I found myself typing strange mashes of "sleep apnea narcolepsy cataplexy" trying to come up with a suitable domain name. I had initially thought of getting Narcoplexy, but realized that was too close to Narcaplexy, a blog that gave me the idea for what I might call this new blog. And, I didn't feel that narcoplexic was different enough. After numerous iterations, that were getting to be too long or too short, I settled on apnarcoplexic...since apnarcoplexy would still be too close to what I had started with. And, the previous apnearcoplexy idea, I felt put too much on apnea and not enough on narcolepsy/cataplexy.

So, the idea for building this site is born....the question then becomes on whether I'll launch the site before the upcoming Narcolepsy Network conference or after. So many projects to try to deal with now that I'm awake more.