Jump to content


Photo

N/c Musicians?


  • Please log in to reply
7 replies to this topic

#1 fc5

fc5

    Member

  • Members
  • 7 posts

Posted 02 July 2013 - 09:11 AM

are there any musicians out there with n/c? a lot of times when I'm practicing I'll slip to the dark side yet still be playing.and sometimes cataplexy makes me mess up.my cataplexy is relatively mild since being on xyrem.

 



#2 sk8aplexy

sk8aplexy

    Member

  • Members
  • 331 posts
  • Gender:Male
  • Location:IN
  • Interests:Balance & Proportion of Tacos. Care & Respecting. Pools & Concrete Skateboarding. Observing & Contemplating. Future & Traveling. Technology & Evolving. Philosophy & Words...

Posted 02 July 2013 - 09:24 AM

When young I played Piano for years and years, but it was a bit too intense/strict upon me, so I walked away and chose Skateboarding as my passion instead.

I can relate though to what you say in both ways, slipping to the dark side and Cataplexy interfering...

Not tried Xyrem since I have 'Idiopathic Central Sleep Apnea' and it could effect my breathing.

My Cataplexy can be quite severe, but after many many lifestyle adjustments, it's much less often severe than at a point in time, years back.



#3 Livi

Livi

    Member

  • Members
  • 95 posts
  • Gender:Female

Posted 30 August 2013 - 11:52 AM

I was a classical pianist until graduate school when narcolepsy ruined my life.  I'd sit at the piano for no more than 5 minutes and then had to sleep.  i didn't know I had narcolepsy until 6 years later.  Still, I sit at the piano to play and the same thing happens.  I need to be moving around to be awake.  

I've also started learning cello but the last 3 months have been too tired to practice after work.  It's sad for me.



#4 Hank

Hank

    Member

  • Members
  • 1,308 posts
  • Gender:Male

Posted 30 August 2013 - 01:02 PM

One of my daughters plays the piano and cello. The other plays the piano and the violin. My wife plays the viola. I am a rusty bag-piper and cannot snap my fingers- but I love to listen.

 

One of my Cataplexy quirks is triggered by hearing really beautiful music (joy) my facial muscles sag and my hands get clumsy. This is a reason I stopped playing the pipes- just as I would start enjoying myself, it just began to sound like I was killing cats in a blender. Not very confidence building, especially prediagnosis.  



#5 Livi

Livi

    Member

  • Members
  • 95 posts
  • Gender:Female

Posted 30 August 2013 - 01:07 PM

Oh, that's so sad about your cataplexy reactions, Hank.   I miss music so much because it's the only thing that brings peace and happiness to my life.  I'm so blessed that cataplexy happens with fear and anger for me, and not with positive emotions.



#6 Hank

Hank

    Member

  • Members
  • 1,308 posts
  • Gender:Male

Posted 30 August 2013 - 01:15 PM

Oh, that's so sad about your cataplexy reactions, Hank.   I miss music so much because it's the only thing that brings peace and happiness to my life.  I'm so blessed that cataplexy happens with fear and anger for me, and not with positive emotions.

 

I know- I remind me from a scene in "So I Married an Axe Murderer" (a comedy). 

 

This is not a home video of me- I promise.



#7 Livi

Livi

    Member

  • Members
  • 95 posts
  • Gender:Female

Posted 30 August 2013 - 01:41 PM

You don't want to take antidepressants for the cataplexy, or xyrem?



#8 Hank

Hank

    Member

  • Members
  • 1,308 posts
  • Gender:Male

Posted 30 August 2013 - 01:47 PM

I have been taking Effexor since January and it is controlling it pretty well- especially the small stuff. Prior to that I was on Xyrem for 7 months but I needed to discontinue. Prior to that I was completely untreated and undiagnosed since childhood. These odd things that happened to me (cataplexy) were a complete mystery and a big embarrassment. What a relief to have a diagnosis and something to help. It is all still very new to me though- so many adjustments to how I view myself- just a huge sense of relief at this point, which I am thankful for. Much better than embarrassment, dread and panic- which have all had their turn.