In early 2016 I was found to have Idiopathic Intracranial Hypertension (IIH) after suffering from headaches and some blurred vision. For a couple of months I attended hospital for tests/treatment including various scans and 3 lumbar punctures. As IIH usually occurs in obese people, and I am not, the final diagnosis seems to be "atypical IIH".
During this period my platelet count was also out of range. Initially, very high but appearing to be recovering, then settling at about 750. By this time ET was suspected.
I had a bone marrow biopsy which confirmed ET with CALR mutation. I now take aspirin and Hydroxycarbamide and eveything looks good. I do not take any other medication and have no more headaches.
I am in the intermediate age group (40-60) with no other health issues and so could stop the Hydroxycarbamide. My Haematologist is happy for me to do this, but as I don't know if it will affect the IIH, I am reducing the dose gradually.
Is there anyone else with both conditions and what is your experience?