I have an appointment with the same general neuro consultant again on 27th May. I had 11 episodes in March in the end, and after some reading around, decided to start taking Magnesium, Vit B2 and CoQ10 (4th April) - everything I've read said 3-4 months to have any effect but April seems to be much fewer episodes so far - yippee!! - only 4 episodes so far :-) could just be a coincidence but don't care! Will let you know how appointment goes - want to get off these other meds, cos they're clearly not working, and get something else that does work!!

How did your appointment go? Sorry I didn't ask sooner, lotus of stress here.

Hi Nemsmom and Jusf... hope you have found your answers Jusf,. I too have a type of hypokalemic periodic paralysis with my diagnosis being Andersen Tawil Syndrome. Hear issues are also part of the Andersen Tawil syndrome and many eventually require cardiac assist devices. Through working with my Doctor we have discovered that I do well with a serum level of 5.4 to 6. I paralyze when my potassium levels are within the normal range. This means I must battle my bodies attempts to keep me in homeostasis. I take a medication that helps me hold extra potassium and also take loads of prescription potassium.