Reply To: Cataplexy and now Narcolepsy around the corner?

Index Support Center Forums Treating Narcolepsy Cataplexy and now Narcolepsy around the corner? Reply To: Cataplexy and now Narcolepsy around the corner?

#11698
Avatar
Pavel
Participant
@pavel

Hi everyone,

It´s been a while since I wrote my post here and I feel bad for becoming inactive shortly after. It´s just been an overall helpless situation where all I face within the healthcare system is sceptism and more sceptism.

Not until recently, for the first time someone was ready to explore the idea of me actually suffering from this disorder. This was on my 2nd appointment with my neurologist (yeah, almost two years in order to get to see her a 2nd time).
This was two weeks ago, and this time she could clearly see signs of cataplexy as I was getting really tired towards the end of our meeting.
A test for a spinal fluid sample was booked immediately and as I write this, I am getting ready for the hospital visit where this will take place.

I´m going to be honest with you guys, with friends, family, an entire society turning its back on me, almost succeeding in making me think I am crazy, imagining things that are not real and having cataplexy attacks as a result of “stress” (from sleeping too much?!?) and so forth…. I´ve not been far from just giving up on everything. At this point I have sold everything I own, I am barely able to keep my apartment and if it wasn´t for my beautiful dog I would not be here to write this. I desperately needed the strength and support I received in this thread one year and seven months ago, without it I also doubt I would make it this far. For this I want to thank you all and let you know I have not forgotten about all the support and kindness you have shared with me.

I am super nervous now, as I´m no big fan of needles (who is?), but there is some hope again now. That with the right medication I could become a person again. Because I am really not anymore. Reading my initial post, recalling the ambitions and motivations I had in life not even two years ago, I can not relate to it. That person and several weaker versions of the same have died since. I feel like an empty shell holding on to the knowledge that things can get better, perspectives should change, and maybe one day I will find new ambitions, become a person with a healthier perspective than the one I have now and finally get to make some kind of progress in life at the age of 32.