I saw the doc last week and she agreed that I needed to switch from K-chloride to K-citrate due to the chloride causing severe side effects (see below) and not adequately correcting my condition(s). Unfortunately, she got confused and wrote the prescription wrong. After my pharmacist harassed my doc office for three days, they FINALLY corrected their prescription error and I started on new meds yesterday (HORSE PILLS...potassium citrate 1080mg, up to 3 a day). This is supposed to:
A) deal with my kidney stones...been having significant flank/UT pain off and on since December
B) bring me out of renal acidosis...I will start monitoring my pH again in the morning
C) bring me into recovery and eventually maintenence mode with the Periodic Paralysis
D) help prevent further atrophy of muscles and cartilage due to the previous meds (potassium chloride)
Currently dealing with several pulled muscles and tearing cartilage (I have a history of this) and it is very painful, but I am praying that I'm on the road to recovery again now that I've switched from chloride to citrate. It was a beautiful day today and I got quite a bit of walking in despite the pulled/torn cartilage in my chest and back.
For the pulls/tears, the doc put me on Valium and Propoxyphene temporarily. It takes FOUR HOURS for the stuff to kick in, but once it does, I do get a few hours of sleep. I think this has been the main reason why I have been able to handle more physical activity during the day over the past couple of days. I have to curl up in a fetal position with the heating pad to tolerate the pain when laying down to sleep, but it's working fairly well since taking these meds. Four to seven hours of sleep over the past couple days vs zero to three hours like I usually get has made a big difference. Just wish I could achieve this nightly for the rest of my life and I would be more functional...maybe even human. :)
So for the few of you who are keeping tabs (HKPP patients and whoever else cares), the med list:
1) K-citrate 1080mg 2-3 times a day
2) Slow Magnesium chloride...you can buy it OTC at Walmart now...1 a day when I remember
3) Avapro 150mg 1 a day for heart, BP, and kidneys. It is extremely sensitive...if I forget to take it or get off the exact schedule, my body lets me know!
4) Flexeril 10mg at night. This is on hold until I finish the Valium...then I'll be back on it. Flexeril is a very weak muscle relaxer (or at least it is for me) so my body tolerates it well and keeps my body from spazzing out so much...not as much as I'd like but something is better than nothing. Those with HKPP know what I mean by spazzing out. Like full body muscle spasms, but sometimes worse.
The Propoxyphene is temporary. I only take pain meds when something major is happening like this torn cartilage...a kidney stone/infection...migraine...surgery, etc. When it comes to the 24/7/365 overall body pain that I live with...tough luck. With systemic disease, chronic pain is inevitable, but I'm staying away from heavy pain meds for as long as I can possibly stand it. I hate taking meds.
I am praying that the K-citrate will bring me back in maintenance mode so I can start exercising and using my neuromuscular stimulator again. I've been very depressed about not being able to go to the gym, even though all I'm capable of is 10-15 minutes on the treadmill and a few leg presses. It is something that I look forward to and I hope to resume that routine soon. I have gained a ton of water weight due to the meds and there's nothing I can do about that, but I still intend to manage my body fat as best as I can. I guess I'm hoping by some miracle that I'll lose weight regardless of the meds.
Time for my English final exam...catch ya later peeps!