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January 10, 2012
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FINALLY have the Narcolepsy results!

Journal Entry: Tue Jan 10, 2012, 3:28 AM
This morning the Neurologist phoned me with the results of the Narcolepsy / Epilepsy tests you've all been waiting for and the epic news is I'm
:iconfortehlulzplz::iconrainbow-nplz::iconrainbow-oplz::iconrainbow-tplz::iconfortehlulzplz:
:iconrainbow-nplz::iconrainbow-aplz::iconrainbow-rplz::iconrainbow-cplz::iconrainbow-oplz::iconrainbow-lplz::iconrainbow-eplz::iconrainbow-pplz::iconrainbow-tplz::iconrainbow-iplz::iconrainbow-cplz:

















I don't have Sleep Apnoea (I don't stop breathing during the night) and I don't have any heart irregularities while I sleep. All this awesome news means I don't have to take powerful drugs or use breathing machines :iconairguitarplz::iconfortehlulzplz:

However, the 3 day / 2 night EEG did show some hiccups. As well as falling asleep during the scans my brain had turned off several times. When I went to bed I didn't get into deep sleep until 2am so the Neurologist agrees I'm definately a "night owl". He explained that without the right type of sleep at the right time of the 24 hour cycle (note he didn't say day or night) my body will keep being tired :sleep:

You guessed it - the Neurologist is going to give me another appointment so he can suggest ways of re-working how and when I sleep. My Gym Trainer has also suggested new eating / excercising / napping times during the day so I'm going to try and get them both in touch with each other :idea:

====

BotCon 2011 was bleeping awesome, but a few days after getting back to the UK this happened > [link] and it was the most terrifying thing in my life :omg:

In November 2011 I had an EEG test to check my brainwaves while the Nurse did everything she could to force an epileptic seizure, but it came back OK (or at least there were no seizure for 30 minutes during the test) although it was recorded in my notes that I had fallen asleep in the Waiting Room before the Nurse came to get me :lmao:

Just before Christmas 2011 I had a blood test that found HLA antibodies. They are associated with Narcolepsy so I was given a diagnosis of "possibly Narcoleptic" in January 2012. The Neurologist explained that if I didn't have the HLA, all future tests looking for Narcolepsy would have been cancelled because I can't have Narcolepsy without HLA :nod:

In March 2012 I spent a week having all sorts of different tests to confirm whether or not I have Narcolepsy. On the first Monday I was fitted with an EEG plus a small watch-looking device. The EEG is glued to your head and monitors your brainwaves for 3 days (2 full nights) while the watch thingy measures your activity for a full week. You must keep an accurate sleep diary for the entire week.
I went back to the Hospital on the middle day (Wednesday) for a "Multiple Sleep Latency Test" and to have the EEG tags removed. In plain Earthlingese the MLST is being shut in a dark room several times to see if you fall asleep, and removing EEG tags is one of the most painful things EVER INVENTED!! Acetone is used to remove the glue but my skin didn't tolerate it, so I had to come home and remove it the old fashioned way... with lots of shampoo, clenching, and swearing!! :cries:
Finally, on the second Monday I returned all the paperwork and the watch-looking thing and now I have to keep waiting for the results to be analyzed...I just went back to the Neurologist today (April 2nd 2012) but for some unknown reason there's been a delay in analyzing my test results so I still don't have an official confirmed diagnosis!



  • Mood: Cheerful
  • Reading: AutoAssembly site
  • Watching: PRIME
  • Eating: Giant jacket potato
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:iconlovemygeekiness:
How did I miss this awesome news!? How can your brain "turn off"?! I think Razzie has been secretly downloading into a very cool avatar bot body and wreaking terror in another dimension. It's the only possible explanation, other than, really, being a dumb blonde! I prefer the former!!!!!!!

Keep up the sweating.............!!! ;-)
Reply
:iconrazziembessai:
I'll forgive you - I've only just stopped squeeing myself :iconlawooplz:
Some types of Epilepsy make your brain go :iconbsodplz: and there's another thing called Microsleeps where you just very slightly fall asleep for a few seconds :nod:

Do that a few hundred times during the day and unfortunately all that "lost time" really starts to add up :noes:
Reply
:iconlovemygeekiness:
haha, natrolepsyette? Oh well, look on the upside, I once saw a documentary about an awful sleep disorder where people cannot sleep at all, ever, and they literally burn their brain out in 5 or so years and die! Mini sleeps must be like UBER powernapping!!!
Reply
:iconrazziembessai:
It might have been this > [link] :(

Sometimes I do get "instant dreams" when I'm trying to stay awake. It's like my brain circuits are trying to make me fall asleep even when they know they're not supposed to! :D
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:iconlovemygeekiness:
yup....thass the one.

Just admit you daydream lol!!!!!!!
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:iconlord-crios:
Really happy to read this
:clap: :headbang: :clap:
Reply
:icon111two:
i didn't know you had this. damn this must be the best moment of your life ain't it? :)
Reply
:iconrazziembessai:
Yes, it was one of the best :party:
Unfortunately Narcolepsy is sometimes treated with powerful drugs, but the drugs cause more problems :(
This is why I am so happy, but now the Neurologist must investigate what is happening in my brain scans... :sherlock:
Reply
:icon111two:
something probably similar, i don't know but i'll tell you anyway lol, when i was in fourth grade i kept waking up at either 2am or 4am. and it sucked. it didn't really screw up my day but it lasted all year. now i have occasional nights where i go to bed, at midnight for example, and i wouldn't fall asleep no matter how hard i tried and it normally took me three hours, maybe more depending on when i go to bed. it actually made me want to cry.
Reply
:iconrazziembessai:
I know what you mean, I'm exactly the same :nod:
No matter what I do I just won't go to sleep at night until about 1am and I wake up naturally about 10am. That's a solid 9 hours but then I'll fall asleep again for about 3 hours more!! :noes:

If I'm tired I'll just fall asleep wherever I am which causes problems when I'm at someone's house, or supposed to be at work :(
Reply
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