Cataplexy without narcolepy

Question

I am looking for anyone who has experience with intermittant cataplexy attacks not due to narcolepsy or parkinsons or MS. Docs have ruled these out. I am 30 and it just started in July and I have been to Atlanta, New Orleans and Louisville KY looking for doctors that dont give up. They have taken MRI, CT,lots heart tests only showed a new sinus arythmia but cardiologist says all his test show its not heart related, tested for epilepsy and he said it was definiately not epilepsy but something was going on strangely so different nuero checked me for mysthenia gravis and said all clear and cannot explain my sudden weakness attacks that come and go. Took many blood tests from endocrinolgist and still taking more tests every week that we get a dead end. Awaiting a celiac test because when these attacks come they last from 7-10 days and are accompanied by diarea which depletes my potassium we keep replacing. Even with a potassium IV, I still had cataplexy drops expecially when surprised by sudden weakness or loud sounds while feeling weak. Magically it goes away on its own and things seem normal for few weeks if lucky then it strikes again. Doc tested my CK level and it was low at 18 so no fear of muscle wasting he says and also rules out Gitelman syndrome according to my primary doc. What tests can we try, seems my file is so thick there can be little left undone. Colonoscopy scheduled for Dec 15th and after that we are at a dead end if that comes out clear. I have no pain. I have emotional flooding after an attack and sometimes my diaphram wont rise to let me breathe well while its happening so I have to be laid on my side not to inhale my saliva because I cannot swallow, only breathing real slow. Its as though my body floated away but i am fully alert but cannot make words only sounds when I try so i use my eyes to blink for yes or no when docs are asking me if I can breathe or if I understand what they are saying. I get a warning like tetany for 10-20 seconds and I try to hold on not to go down, but I always give out no matter how much I try to hold on, I will drop. I can be in middle of anything and a stiffness comes over me, I get real alert and quiet then start dropping slowly as I hold on tight to something. Soon as I let go, my whole body lets go at the same time and my eyes sometimes flicker cause I am trying to open them if they shut on me so I can communicate with them. If anyone has seen this please fill me in.

Thanks
From Kentucky and will travel anywhere.

This discussion is related to cataplexy without narcolepsy.

livlong · Answer

Hi. Just read your post. All symptoms are similar to mine. HAve you found a diagnosis? Love to discuss with you and share experience. Let me know if you are interested and I will send you my email.
 Also have you been tested for Hypokalemia Periodic Paralysis?
 Graciously, Olivia

livlong · Answer

Hi. Just read your post. All symptoms are similar to mine. HAve you found a diagnosis? Love to discuss with you and share experience. Let me know if you are interested and I will send you my email.
 Also have you been tested for Hypokalemia Periodic Paralysis?
 Graciously, Olivia

rainsdelirium · Answer

I thought I was going to die till a month ago and yes it does seem to get worse with age at least it has for me.  When I was younger I'd just fall and be able to get right back up but over time the attacks have just gotten longer and longer.  I know that doesn't help but there are treatments for cataplexy, I haven't got to test any of them out yet but it gives me great hope that there is at least some kind of treatment.

Taxgal2010 · Answer

I have been so sick over this because I really though i was the only one. You have lived for 18years with it so that means I am not going to die this year. Thanks for reaching out.