Thursday, November 10, 2016

It finally happened -- An illness that stopped me from eating

I suppose it was only a matter of time.  I've been highly susceptible to strep throat my entire life.  I was scheduled to have my tonsils removed, but given the malignent hyperthermia risk with anesthetic for CPT2 patients, that surgery never got scheduled.

I was set to spend election week in Vancouver, Canada with my family.  I started having throat pain a few days before we left, but I got on antibiotics and was sure I would be ok.  I wasn't.  Soon enough, the strep had caused lesions on my tonsils.

A quick word about the Canadian health care system:  Even if you are a cash-pay patient, it is way cheaper than in the US, and the quality was great.  I know this because I visitied a doctor here to change my medication, as I was pretty sure the antibiotic I was on wasn't effective against strep.  They switched me to a new antibiotic.

Soon enough, the my lesions were healing.  I'm still feverish and symptomatic, but on the mend.

With that as the background, here is the CPT2 issue:  I couldn't eat.  Literally, even swallowing water triggered my gag reflex.  When there are lesions on your tonsils, your brain freaks out and thinks each lesion is a piece of food ready to choke you.

As a result, I had two CPT2 episodes.  Remember that fever (check) and illness (check) are triggers.  Lack of carbs is the major trigger (check).

What was the solution?  Well, it gets complicated.  Normal anti-nausea medications are off the table for me since promethazine causes me to develop permanent dyskenesia.

Sounds like check-mate, right?  I can't eat because I have nausea.  I can't treat the nausea because the treatments expose me to unacceptable side effects.

It wasn't check-mate.  My life was saved by medical marijuana.  A very small amount of Indica (a strain called "BC chemo" bred to suppress nausea) was enough to override the nausea and let me eat.  Both times I had muscle breakdown, I was able to reverse it quickly with BC chemo.  The alternative would have been being hospitalized and being fed through a stomach tube or intravenous drip.

I still feel bad.  I'm still sick.  But my muscle disorder is under control.