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Big Week: Cataplexy That Lands Me In Er And No Rem On Mslt, What Now?

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#1 squirrel!



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Posted 29 August 2013 - 03:56 PM

Hi guys...


  If you have been following my story, this is quite an update... First a little background, I am 31 years old, 5'8, 140 lbs. I've been dealing with EDS for years and diagnosed with ADD, hypoglycemia,muscle weakness etc. throughout the years.I finally got a sleep study for possible UARS and it showed no RERA's, but multiple arrousals, etc and so a repeat Poly and MSLT was done. My Dr was very convinced I fit the criteria for Narcolepsy the more we talked. I even started to recall possible cataplexy episodes and was almost "looking forward" to sharing my thoughts with her at my follow up appt. I felt like the pieces were finally coming together and there was FINALLY an answer for me.


My apt is next week, and as of yesterday, I had still not heard my results. Then, yesterday morning, I ended up in a cataplexy/seizure attack that left me unable to talk, walk, move muscles, etc. I could hear everything around me and terrified myself and my poor 4 year old who had to watch. This all happened in a Target parking lot. It had never happened this severe before.


When I finally was able to talk ( about 30 minutes) I was telling the ER dr about my possible NwC diagnosis. He called to see if he could speed up getting my results back. They were faxed over. Guess what it showed? Not only did I not reach REM, but my latency was 10 minutes?! seriously? How is that even possible? To say that I am discouraged, frustrated, even embarrassed.. is an understatement. How is this possible?  How should I proceed? On one hand I KNOW there is something wrong. I am a very stable, healthy person. I have had so many others tests to rule out these symptoms and it all comes back to narcolepsy. I feel like I should continue to fight this and see what happened at the sleep study, if anything for the safety of my kids since that attack.

But on the other hand, I feel very defeated.. maybe I should just give up, take my Adderall and move on- without a diagnosis?


My follow up with sleep Dr is next week. For now, I'm stuck.


Thanks for any advice/thoughts...



#2 Livi



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Posted 30 August 2013 - 05:21 PM

Did you drive to the ER? Did they test your blood glucose? It doesn't sound like fainting since you were aware , but if you have muscle weakness at times I'd get my blood pressure/circulation/arteries/oxygenation checked since lightheadedness & fainting are signs of a heart problem or heart attack in women. Again, it doesn't sound like fainting, but 30 minutes is a long time for a cataplexy attack.

You said your MSLT sleep latency was 10 minutes, is that averaged or is that your shortest latency? On my report it says "Normal > or = 10 min."

Maybe you are an overachiever as far as exercise like Hank is, but since a lack of Orexin causes more of an appetite (for carbs especially), it is rare for a narcoleptic not to be overweight. So you are doing great with your weight if you have N!!