Wow! I've read through all above posts. Sympathy to all. I'm at an earlier stage, age 71, 4 years treating Cal-R mutation ET. My worst issue is digestive problems caused by HU, but I also wake up with headaches, hot flashes, and itchy places in legs and feet. I have just changed hematologists. Will be cutting back on HU due to side effects, and adding Anagrelide. Want to pass on these tips: For nighttime itches, I use over-the-counter anti-itch cortisone cream and anti-itch moisturizing cream. For headaches that wake me up, it helps me a lot if I spread a soothing, cold damp wash cloth across my forehead. Sometimes I then do relaxation exercises, such as imagining I'm lying on a towel on a warm beach. If that doesn't work I get up and play computer solitaire until my mind settles down.
I like your innovative approach to relieving symptoms Janice.
Some people are reluctant to use meds to help with sleep. Don't be shy about asking your doctors about that. My internist suggested a prescription sleep med called Ambien. I don't need that because over-the-counter Benadryl works for me and was OK'd by another doctor. I sometimes (not every night) take a very low dose, 1/2 a tablet. I do that early in the evening and not in the middle of the night, so it has time to wear off by the time I get up in the morning. Another possibility is a low dose of an anti-anxiety medication like Lexapro, which I used years ago during a family crisis. Happy Holidays and Pleasant Dreams to All!
P.S. I just noticed there is a video on this site about managing itches.
The burning in the hands and feet are the worst! I get that mostly in the feet and calves in the evenings before taking my aspirin before bed