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Hi Folks,

I've been having many more headaches than in the past and wonder if it's related to my ET. I'm JAK+ and my blood levels are consistently good with control from HU. Does anyone know if it can be from our cancer if you have ET that's well controlled?

Also, because I'm limited in what medications I can take my doctor suggested trying a medical device called Cefaly which attaches to your forehead and sends electrical stimulation to your trigemenal (sp?) nerve. Does anyone know if this device works very well?

Thanks, I appreciate any info you have.


2 Replies

hi katie,

i have found that if i dont drink at least ten glasses of water, ( 8 oz glasses) i get more headaches. especially at night, i call them scalp headaches and if i sit up for an hour or so the headaches go away. i am hypersensitive to most drugs, so cant take hu and a couple of others. try drinking more water ( but not during meals as it compromises your digestion) and see if that will help . good luck, glenda


Thanks Glenda. I already drink 2-3 liters of water daily but I needed the reminder about meals. I’ve had surgery for bowel adhesions and read that too much liquid diluted stomach acids needed to digest. Glad you’ve found a way to deal with your headaches. Katie


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