My experience with Hypokalemic Periodic Paralysis

I was clinically diagnosed w/Hypokalemic Periodic Paralysis based on symptoms & response to treatment finally around 2010 by a team of specialist at Strong Memorial Hospital in Rochester N.Y. after yrs of being undiagnosed. My first episode happened as a child around 8 yrs old at night. Parents were told it was night paralysis or a waking dream, not epilepsy. Years later as a teen just a few episodes after or during gym class, was told it was fainting spells. Around 2009 It intensified to a full blown paralysis occasional- with episodes of extreme weakness a few times a week. It is has stayed the same as of now as far as frequency. For years Dr.'s said it sounded like a seizure but It can't be if my mind stays alert & I don't urinate myself. My mom has epilepsy so they thought it was that but tests came back ok as a child & adult. They thought MS but no, diagnosed w/CFS, ER would say blood work looks fine just low potassium. I felt helpless & thought I was going to die of something no one knew I had. I felt like no one understood -only my daughter

(14 yrs old now) who witnesses the attacks & my best friend Crystal who she calls when it happens. Finally my neurologist who felt for me, had no more answers so sent me to see the specialists-Grateful he did, so Relieved I finally got my answers that actually matched what I had been experiencing.

So briefly my symptoms: I have severe muscle weakness 1-2 times a week where I'm weighed down & I can't move anything but my head & neck- sometimes for 45 min to an 1hr if I take my potassium in time - sometimes hours, but I always come out of it. I also experience occasional episodes of full body paralysis which is rare but the scariest! I'm trapped in my body that won't work fully mentally aware but unable to even scream for help, I can't move, talk, open my eyes -but my mind is aware the entire time ,I feel my heart go from racing & pounding in my chest to a slow pound...praying to God to not let me die, because that's what it feels like ,screaming in my head for someone to please help me, check on me ,find me & notice something happened. I am exhausted the rest of the day afterward, but otherwise ok. I also get warning signs before it happens. My ears start ringing, I feel extremely nauseous & dizzy ,heart pounding, skin feels tingly & hot like I should be sweating but no visible sweat & from what I'm told my skin is not physically hot to the touch,muscle twitching/spasms, speech slows. By the time I try to make it to the bathroom to vomit or try to lie down, my legs go first shortly followed by the rest of my body. I only go to the ER when full body paralysis happens or I'd be there way too much. My triggers: On the advice of my Dr. at the time I kept a detailed journal for 3 months of everything from what I was doing to what I ate. It helped a lot! I found that definitely when my potassium was low- from ER trips it seems if it drops below 3 so in the 2's or below. But also heat, really hot baths, exposure to direct sunlight when it's hot out for more than an hour or so & after any high paced workout, So exercise wise I do palates or slow stretching. After surgery weakness lasts the whole day. No reaction to light sedation- like for a colonoscopy I'm fine. Also did have a reaction to IV Benadryl - I couldn't breathe needed oxygen, severe nausea & threw me into an episode of extreme weakness.

They tried me on Acetazolamide in the past ,It reduced my episodes slightly but I experienced burning severe nerve pain on the bottoms of my feet. They tried daily potassium which did not work either - but finally found prescribed potassium works for me if I take it like a rescue- So as soon as I feel my warning signs I take 2- 3 pills & it either stops the attack or the episode doesn't last as long. In the ER liquid or IV Potassium mixed w/saline (Not Glucose) given slowly works quickly to make me feel better, Straight K in IV is very painful.