Unusual Cataplexy Trigger Leaves Me Underwater

Note: This story is from Amy in the United Kingdom. She writes about her experience with the lack of support she's received from her neurologist and the UK healthcare system here.

I told my neurologist that I can no longer drink cold water from the fridge as it affects my cataplexy and I lose momentary muscle tone.

A cataplexy attack while swimming

I also told my neurologist that , when I was doing a charity swim for diabetes and swimming the length of the English Channel in a swimming pool, I suffered a cataplexy attack when submerging my head under the water.

Thankfully, I was heading back to the shallow end. Luckily by this point, I knew what my cataplexy was and I am a powerful swimmer, confident in water, so did not panic. I just allowed myself to drift until feeling my hand stroke the tiles of the swimming pool floor and it snapping me back.

Cold water as a trigger

I cannot wash my face in the sink basin due to this also causing me to drop with cataplexy episodes and once whacking my head off the tap which hurt like hell!

I tested putting my snorkeling mask on and submerging my head under the surface of the water. Instantly: cataplexy. But why?

Searching for an explanation

I understand that the cataplexy is controlled by emotion but, for me, drinking cold water can also shock my system. Yet, I yet never got any more of an explanation as to why going under the water in a swimming pool was affecting it.

My neurologist seems to be past the years of "investigating."

Accepting limitations of my narcolepsy disability

This sucks because I wanted to go scuba diving eventually in my lifetime as part of my bucket list,  and I fear I will no longer be able to.

I have already accepted that I will no longer be able to go sky diving, which was also on my bucket list. So yes, lots of acceptance is needed regarding this disability, which, if also dealing with other considerable stress/bereavement, etc., takes a lot to work through.