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I went to a Narcolepsy Network Conference in Las Vegas #NN2011

11/10/11

  07:58:05 pm, by The Dreamer   , 3536 words  
Categories: Travel, Healthcare

I went to a Narcolepsy Network Conference in Las Vegas #NN2011

But, the main thing I had learned was that the EEG I had in January 2010 was not the test for Narcolepsy (and I never did get the results of it, even though I've asked a few times)..and that the symptoms I don't talk about anymore, should get mention with my doctor. Things like hypnagogic jerk, hypnagogic hallucinations, and sleep paralysis. When I told my doc these things, he said that sounds like Narcolepsy and the only test he knows is an MSLT. So, I got one. Then when the results came out questionable, he put in my file that I'm crazy and I doesn't know where I got the idea that I might have Narcolepsy. I never said that in my conversations with him....since its supposed to be the doctor's job to figure out what's wrong with me. Even though they don't seem all that interested as long as there's a symptom they can treat.

Kind of like my Hypogonadism... when they found I had it, they first tested for pituitary tumors...and wanted to start hormone shots. Well, negative for tumors....and how about those hormone shots? My mother got into this whole thing that I've probably been this way all my life, and how I've always seemed feminine and have nicer finger than my brother's wife, etc....so maybe I have Klinefelter's And, I should get a chromosonal study done. Well, doctor didn't have any interest in finding out why I have hypogonadism, so I had to convince him to run the test. Well, the result was negative for Klinefelter's...instead I have XYY syndrome. So still no explanation on the hypogonadism....but I've been getting hormone shots for almost 18 months now.

Though I had seen discussion on hypogonadism and sleep disorders in other forums....and I had commented that I do sleep better the nights after a hormone shot than the nights before my next one. Though it doesn't fit what the research on sleep disorders causing hypogonadism were saying. In those...it was the lack of deep (restorative) sleep stages that were causing the hypogonadism. Well, I have a lack of deep (restorative) sleep. Recent PSG says "the deeper, more restful phases of sleep ... when markedly diminished suggest an underlying sleep disturbance with the most likely etiology being obstructive sleep apnea." And, then the next paragraph is: "The total AHI for the night was 0.0 consisting of 0 obstructive apneas, 0 central apneas, 0 mixed and 0 hypopneas." So why am I not getting the "deeper, more restful phases of sleep"?

Doc says there's Xyrem for people who have Narcolepsy, but while the MSLT was borderline...and Neurologist sleep doc said there was SOREM. The spinal tap was negative, so I don't have Narcolepsy...so there's nothing that can be done about my sleep problems (other than the current Z-drugs which don't do that.) Didn't matter that the findings were that 99.1% of people with no/low hypocretins have N with C, or that 88.5% of patients with N with C have no/low hypocretins. But, the test is inconclusive for other types of N.

At the 26th NN conference, I learned that there are 4 main types of Narcolepsy. Narcolepsy with Cataplexy, Narcolepsy without Cataplexy, Narcolepsy with Atypical Cataplexy, and Narcolepsy due to injury or disease. And, I met some people that talked about their Atypical Cataplexy. I also heard some of these people didn't get that part of their diagnosis until much later, when the encountered the trigger for their Cataplexy later in life. A common one that I kept hearing about was when they experienced their first O. Well, I'm a 43 year old virgin, so I'm probably never going to find out.

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Now instead of subjecting some poor random forum to a long rambling thought, I will try to consolidate those things into this blog where they can be more easily ignored profess to be collected thoughts from my mind.

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