Hi,
Don't know if anyone else has this disorder. Mine is a genetic disorder of skeletal muscle. I currently take eplerenone and mestinon and potassium chloride.
Took 19 years for a diagnoses, basically because things just got worse after I was officially post-menopausal.
My issue for today is that little is said about the problems with digestion. I was constipated for 2 years with intestinal paralysis and/or distension, or as my GI tells it, colonic inertia. I had to learned on my own that for me, 2200 mg of potassium a day is the way to getting a normal bowel movement that didn't look like dry pebbles.
Wish someone had told me that even though HypoKPP-2 is a disorder of the skeletal muscle that it effects total potassium stores and will effect smooth muscle too.
I also learned from the Parkinson's Disease post that probiotics can help them, well, it helped me too. I take Pearls first thing in the morning and I feel and look brighter.
The other thing I learned from the Parkinson's Disease post was that strong coffee upon waking jolts your intestines. Due to weakness when I wake up, i just can't get up and make coffee. I make coffee the night before and put it in a thermos, inside a plastic bad in my bed. When the alarm clock goes off, I swall 2 to 3 gulp fulls and wait 30 to 60 minutes for the blessed event. Only then can I take my meds. Something recently about all the meds and supplements I take causes hypersalivation, nausea, hyperventilation. If I wait an hour, I'm good. Also, don't forget cascara sagrada along with Miralax for extreme problems. However, I find that anyone with HypoKPP-2 must supplement this mix with potassium, or they can be prone to potassium depletion which can lead to rhabdomyolysis. I take 3 to 5 (99 mg) pils along with the cascara and Miralax. For me, this means more potassium on top of the 2200 mg I take daily.
Tip: GI problems cause horrible dark circles under the eyes. With these remedies and others, I can now use less
concealer.