By The Dreamer on Sep 28, 2012 | In Narcolepsy/Cataplexy
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."
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