Thursday, August 22, 2013

HKPP Case Study of the Week

http://www.midlevelu.com/blog/case-study-week-hypokalemic-periodic-paralysis

I ran across this article by accident. A nurse practitioner diagnosed HKPP in an 18 year old male who arrived in the ER unable to walk. He was lucky (I say that ironically) that his potassium was so low. Otherwise, they may not have known what was going on or believed him at all.

I'm glad the NP acknowledges that it's hard to diagnose HKPP because potassium doesn't always fall below "normal". I am one of those people, and the fact that my potassium doesn't always drastically fall out of "textbook" range is why I was untreated and mistreated for so many years. I am permanently weak at a younger than average age because of this.

I hope people will continue to bring awareness of all of the facets of this rare disease, so everyone who has it will be diagnosed and treated properly.

Saturday, August 3, 2013

Migraine meds a no-go...definitely.

I regret taking Zomig so much right now. After only one pill, I had an episode...slumped over literally pinned to the bed unable to move. Four hours later, was able to get up and do a Frankenstein walk to the restroom (8 feet from my bed), and almost couldn't open my mouth enough to swallow my emergency liquid potassium at bedside. At some point, I said in my mind "I really don't want to die today, God". Dramatic, but whatever. I meant it. I fell asleep for a few hours. I'm still moving in slow-motion and it's been over 9 hours since it started. I feel like I just came out of anesthesia. I feel every muscle in my body and I cringe with every movement, even hurts to breathe. I would have blogged earlier but I couldn't keep my eyes open or type. I still can't open my mouth enough to do more than sip liquid K.

P.S. - And I still have a damn migraine.

Thursday, August 1, 2013

Local clinic update 8-1-13

The clinic had no explanation for the mistake made on my Inspra script (see last medical update if you don't know what I'm talking about), but they called the pharmacy and worked it out. Now I'm back up to 100mg a day, although I am supposed to be on 200. I'll have to wait till I see Dr. F in November, then Dr. B again in December before it will be increased again. At that point, I will be back to where I was supposed to be nearly a year prior. Lord, this has been so frustrating.

In other news, Dr. B wants me to try something...anything...to deal with the constant migraines and tremendous lack of sleep. As those with HKPP know, the meds he prescribed for this (migraine med and a tricyclic) probably won't go well and I expect to have to discontinue them quickly. Maybe I'll get lucky, but history proves that these type of meds cause serious HKPP symptoms in me. We'll see. I start them tomorrow night.

He had no answers for my ailing right kidney. No infection shown, but he put his hand on my back and I nearly jumped off the table. No clue what the thing is up to, but it's giving me a lot of grief at the moment. Maybe the meds I start tomorrow will help a bit.

If you're confused, I don't blame you. Here's the rundown:

Dr. F is Nephrology and Internal Medicine. He and the doctors at the MDA clinic are in Jackson, MS. I see them several times a year and consider them my primary physicians.
Dr. B is local. He's Internal Medicine and runs a low-income clinic where I receive medication assistance. I have to take my scripts from Dr. F to Dr. B, who has a program for people like me who can't afford their medications. He has decades of experience and is widely respected. He has read about Periodic Paralysis, but I am the first person he has met with the condition.

All of my docs couldn't be nicer, and I'm grateful. I believe they are doing their best, and that's all I can ask for.