I'm new here, I have ET - does anyone also have IIH?

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?

4 Replies

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  • Hi CurlyKale. I have had a similar experience. I'm 59 and have ET with jak2+. I'm on aspirin and hydroxycarbamide. In mid June 2016, I developed a constant headache of varying strengths. Like you after many tests and an initial diagnosis of cluster headaches, in November I had a final diagnosis of primary cough headaches with secondary muscle spasms. The drug my neurologist put me on was indomethacin (Indocin). It's very effective at stopping the headaches. Both my haemo and neuro can't say if the ET is linked to my headaches. I already had the headaches before I commenced taking Hydrea. I'm not sure if this info is helpful in any way.

    Cheers

    Mark

  • Thanks for the reply. Headaches are complicated aren't they - such a variety of types and causes. Headaches are listed as one of the symptoms of ET but you never know if your headache is a symptom or something else entirely.

    It sounds good that your headaches have been sorted and its nice to know that it can be done.

    I'll just have to see how it goes!

  • Hi yes I have iih. This post is old but I'll say hi I case you're still around

  • Sorry for the delay, thanks for the reply. I'm in the mpn community on healthunlocked (Blood disorders) but I do also have IIH or rather did have. It seems to have gone just now and that my be related to the drugs for my blood disorder. This is all unconfirmed by the doctors. I don't suppose you have a blood platelet problem too?

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