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Old 08-21-2012, 06:16 PM #1
kimmie1000 kimmie1000 is offline
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Join Date: Apr 2012
Location: Philadelphia
Posts: 9
10 yr Member
kimmie1000 kimmie1000 is offline
Junior Member
 
Join Date: Apr 2012
Location: Philadelphia
Posts: 9
10 yr Member
Wink Hypokalemic Periodic Paralysis/Mestinon/Ketogenic Diet

Hi, Everyone,

This is my 3rd thread. I guess I've got a lot to say. Anyway, I wanted to speak to my experience with mestinon.

Mestinon is wonderful because it's fast-acting. For me, it works in about 10 to 15 minutes after ingesting it. Eplererone is for the broad pallette of my neuromuscular disorder, with a half-life of 6 hours before I feel its absence, but mestinon caps it off, especially for those in-between hours.

Intially, I had a horrible allergic reaction to mestinon. I had what my
dermatologist called an auto-immune response that she referred to as a dermagraphic response. If were to trace the letter "A" on my skin, it would show up. It was always in the evening that things ramped up, and at that time I was on 60 mg twice a day. I can joke now, but I had a brief moment where I thought I must have worms under my skin.

Anyway, with mestinon, I noticed at once that I could breathe better. No more stuttered exhalations for me. And my jaw, it was no longer tight and stiff, making me think this must be what lockjaw feels like with tetanus. Too, I didn't pace when queued up in lines at the store because of the unconscious discomfort of supporting my muscular weight on my hips. Too, my GI doctor indicated that it could help with my intestinal paralysis/colonic inertia issues.

But I would have whelps covering my entire body, and one night after work I scratched until the alarm clock went off the next morning. Thought I was going to scratch my skin off, and my dermatologist said topical benadryl was a "no-no."

But, then, in an attempt to control the concurrent myotonic/paralytic and severe postprandial attacks which caused me to lose consciousness, both conditions triggered by insulin spikes after eating carbohydrate meals,
I decided to give up carbs and went on a Ketogenic diet after hearing that epileptics have used this diet to control seizures. Who wants to lose 3 hours of their life every time they eat pasta, rice, bread, even half a strawberry. Not me!!!

In the days that followed I began using Mestinon again and found that the dermagraphic reaction that mestion usually provoked, and which my dermatologist characterized as an auto-immune response, no longer happened.

Maybe fat loading for those with this genetic defect is because scientist have discovered that the inside of the cells upon recovering from a HypoKPP-2 attack are filled with non-esterized fatty acids. An abstract about HypoKPP states the following:

It is postulated that hypokalemia causes muscle ischaemia, resulting in an accumulation of free fatty acids (FFA) within muscle cells. High concentrations of FFA may induce molecular changes and increase the permeability of the sarcolemma. Higher than normal levels of these enzymes have been used to identify non-symptomatic carriers in families where CK is elevated chronically.

Anyway, will have to wait for some researcher to look into this. In any case, my total cholesterol improved from 216 to 162. My triglycerides normalized, my HDL increased, while my LDL decreased, and I lost 2.5 pounds per week too, but plateau'd after 17 pounds were lost ... effortlessly. Is this because I'm a mutant, with a special power that allows me to thrive on fat? I pressed my doctor to get A1C test, glucose, cholesterol to monitor my progress, and alert me to any alarming trends. There weren't any.

Anyway, I can't take mestinon effectively unless I remain on this type of diet. When I tried to incorporate carbohydrates again moderately, even when usng a compound called chlorogenic acid, known to moderate blood glucose and insulin spikes, well, the first week I gained 5 pounds, 2nd week gained 2 poounds. Of course, I went back on the ketogenic diet and lost the weight all over again within a week.

Go figure!!! What superhero costume should I wear? Where's spiderman?
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