Wednesday, November 14, 2012

HKPP Diamox/Acetazolamide Treatment: Rough Start

I am so grateful for the Hypokalemic Periodic Paralysis support groups on Facebook and the email Listserv. They have truly been a life-saver. I spent so many years alone with this disease, being disregarded by everyone, but now I have a group of dozens around the world going through this battle with me. There are a couple of physicians who specialize in Periodic Paralysis running the Listserv, and I have received a wealth of information from them as well. We are all learning from each other every day, and I have no doubt that I'd be a dead woman if not for finding this level of support. Thanks will never be enough.

I started on acetazolamide, as I mentioned a couple days ago, and the last 36 hour span has been a bit of a nightmare. My muscles have not declined...I want to make that clear. In fact, I've had moments where I felt for a minute that they were a tiny bit less heavy than usual, which is encouraging.

However, the side effects from the drug have been nothing short of brutal. I felt like I had been stabbed in the head...it was one of the worst migraines I've ever had. The nausea and dizziness were equally troublesome. I pulled a muscle in my back grabbing hold of the kitchen counter to keep from falling. I almost never cry over my symptoms, but tears were shed and I nearly had to ask to go to the ER overnight.

In talking with quite a few patients about it, everyone told me the exact same thing: my body was being ransacked by this drug...that I was starting on too high of a dosage. They said I should have started on a smaller dose and slowly worked my way up to the intended dosage over a period of weeks. They suggested I call my doctor, so I spoke with his nurse this morning and told her what was happening. I received a call back from Dr. Fulop, and he agreed that I should cut the dosage in half and slowly work my way back up. I think he is a bit frustrated with me, or with the situation, but he seemed encouraged that my muscles were not doing worse in spite of the horrible side effects. I'm so grateful to Dr. Fulop for not giving up on me, and I hope he never does. He is truly one of the best doctors I've ever had.

So in summary:

Acetazolamide 250mg twice a day made me feel like I was dying, bringing me to the conclusion that 500mg a day is not a good dosage to start with. Doc agreed that I should break the pills in half and take 125mg twice a day for 2 or 3 weeks. I'm supposed to call him with an update, then we will decide whether or not to up it to 500mg again.

I'm still on all of my other medications in addition to this. I will post a separate blog entry with the entire list, and comments will be open on the HKPP blog if anyone has a question.

I'm off to start the new dosage. Wish me luck...