I saw Dr. B at my local clinic for a follow-up. We discussed gastroparesis, diet, insomnia, sleep deprivation, tinnitus, chronic pain, potassium, and hormones.
My insomnia and sleep deprivation reached a dangerous level once again. I was disoriented, and it was no longer completely safe for me to go anywhere alone. I have felt on the verge of collapse. Tinnitus has also been a big issue. I told him this, and we went over my options. Unfortunately, with Periodic Paralysis, the risk is very high with any sleep aid, anxiety medication, antidepressant, or muscle relaxer. Most of these medications have already been attempted over the last 28 years (yes, even in childhood I was asking for help because of this) and made me too weak and sick to function. Dr. B suggested trying the lowest possible dose of Ativan, beginning with a fraction of a pill, to see if it does anything. In my desperation, I agreed.
I'm breaking a 0.5mg dose in half and taking it at night. I am extremely tired, I'm having more muscle weakness than usual, and the tinnitus is still at full screaming volume. That's the bad news. The good news is that I'm finally getting a few hours of real sleep, and my anxiety has lessened a little. That alone is enough to make me want to keep taking it. At some point, I may have to get off of it. The muscle weakness is a problem, but for now, it's manageable enough.
I requested a hormone panel, and the results were normal. I'm not in menopause, or even pre-menopause. I had to have surgery in 2010 to remove small tumors and nuke my psychotic uterus, and I haven't had a noticeable cycle since, but Dr. B explained that I'm still ovulating and experiencing hormone fluctuations. That explains a few things, as Estrogen is a pretty severe HKPP trigger.
My weight is steady now, and although I'm still having plenty of problems with gastroparesis and intestinal motility, the situation has definitely improved. I haven't been back in the ER and I'm tolerating a little more food again. I'm still trying to figure out what I can eat and what I can't. I can say without a doubt that fiber is out. It is my number one enemy. I occasionally try vegetables to see if I can digest them without a problem, but most of them are a no-go. I don't do well with beef, pork, or chicken. I am currently mostly pescetarian, and it's not a perfect diet, but it's going ok. I am still eating a lot of tomatoes, brothy soups, and soft foods that contain little to no fiber. I've been baking fish, boiling shrimp, and making ceviche. Noodles digest well, but they don't do my HKPP any favors, that's for sure. I still eat them sometimes, and handle the side effects as best as I can. I am supposed to meet a new gastroenterologist next week. I'm on the fence about going, but I probably will.
I'm saving up to drive to Jackson if and when my renal doctor wants to do that HKPP interview he talked about. I appreciate people who want to know about the condition and bring awareness. I spent so many years being disregarded that I am still very defensive about having this condition. I tuned into the live stream of day one of the Periodic Paralysis International Conference today and was instantly upset on behalf of those who stated that they weren't being taken seriously and were suffering from lack of treatment. I don't think I'll ever stop being angry that this happened to me and continues to happen to others. It's disgraceful. It's unacceptable.
I don't take my doctors for granted. I hope to God they know that.
I'm so damn tired, but I'm getting by, and life is maybe 10% more tolerable with the new medication. Right now, I'll take whatever I can get. I will keep you posted.
(Cross-posted to the medical blog.)