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612876 tn?1355514495

POTS and Narcolepsy

I am grinning ear to ear.  A giant weight has been lifted off my shoulders.  I recently switched neurologist's offices and started over with a new team, hoping to find the answers to the parts of my illness that remained unexplained by the POTS/syncope/migraines diagnoses.  In particular, the fact that sometimes I am completely paralyzed when I "come to" from a syncope.  

I have talked to others with POTS who have had this same problem, and I don't know if this same answer will fit, but I wanted to share in case this information could possibly help someone else who is experiencing this paralysis.  Apparently, I have narcolepsy (with cataplexy); by taking a very detailed history all the way back into my early childhood, they were able to determine that I had the narcolepsy BEFORE I had POTS, but the cataplexy only showed up when I started having syncope.  It seems that for me, the syncope triggers the cataplexy most of the time; it almost never happens without me fainting first.  The sleep specialist said that narcolepsy and dysautonomia are mediated in some of the same parts of the brain, and for reasons that aren't yet completely understood, people who have one tend to have higher rates of the other than healthy people.  

He said that this will make treatment of both disorders more complicated, obviously.  But I am just so excited to have an answer finally!  And to have a doctor who actually understood what I was talking about and who was so thorough and asked so many questions that seemed like the "right" questions if that makes any sense.  I don't recall any other doctors ever asking about before I got sick with the POTS, but here it turns out that made it so much more obvious once he knew what he was looking for.  

So anyone else out there who is having that same problem of being paralyzed when they come out of the syncope, I would encourage you to at least consider consulting a sleep specialist to have narcolepsy ruled out.  There is no cure, but he said there are treatments they can try for it.  At any rate, it's reassuring to have an explanation for something that has been so scary and difficult to explain, and that some doctors have treated me like a nut for.
3 Responses
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492869 tn?1285018933
I'm so happy that you finally got an answer on that!  I hope the treatment isn't too difficult, good luck!  I have occasional paralyzing symptoms as well, but was told it was related to low electrolyte levels.
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1434905 tn?1283645103
I hi have both narcolepsy and pots . Have you found any meds that help
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612876 tn?1355514495
Sorry, this is an outdated "dead" thread from over a year ago.  The information in older threads can often be outdated (as you can see if you compare my diagnoses to the PM I replied back to you); thus, we encourage people to start a new thread rather than replying at the bottom of old threads such as these.  You're welcome to link the URL of this thread if you want to reference it when you create your own new thread in our forum (which you do by clicking the green "Post a Question" button while here in the Dysautonomia community).  

Thanks!
-heiferly
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