Light headed?

[PeachJ]

I do not have my full diagnosis but have ET. I have been going through testing since Nov. This past week I have been experiencing a strange rush in my head. It like being light headed but more like a rush inside of the skull and pulsates in and out. It’s a very strange sensation and periodic, Maybe a few times a day. I want to write it off as being dehydrated as I am constantly thirsty, but I’m curious if anyone has any insight.

[Mostew]

I used to have that to . So hard to describe .. wasn’t dehydration .

I have JAK 2 positive .

Weird , despite my platelets being far to high still I feel fine .

Taking various natural stuff ( seeing Ayurvedic Practitioner)

I know how lucky I am to be able to . Something must be working . I also used to get white lights in front of eyes which I thought was the strip lights . Made me feel really sick . For years before I was diagnosed

Hope it doesn’t last . Maybe stop doing things when it happens . Weird when I was like that I ‘speeded up ‘ and made myself worse!!

Xx

[Mazcd Partner MPNVoice]

Hi PeachJ, it would be best to get advice from your GP about this. Best wishes, Maz

[Mostew in reply to Mazcd]

I did go to Dr.

Unfortunately he had no idea and did tests but until I kept asking about rising platelets he didn’t do test that reviewed JAK 2.

Thank you so much for your consistent wonderful support and advice

Especially during these stressful times

Warmest wishes to you

[Scrollernut]

Exactly what I’m experiencing. Haven’t got full diagnosis yet, still need bone marrow biopsy and MRI so not on meds yet and doc for some reason thinks headaches, tiredness and dizziness is not MPN related but the more I read from people who actually have the disease and are experiencing the same things I kinda wonder if he really knows what he’s talking about! Or is everyone having problems on meds?? Do you think it is med related?

[Mostew in reply to Scrollernut]

I’m only taking low dose asprin, so not meds related . It’s so hard to pinpoint what causes what isn’t it .. nor does it seem to be platelets as mine are 805 at last blood test , a puzzle

Hope you can control it xx

[Mica11]

I had episodes like this before diagnosis and a few afterwards. Only happened in a milder form twice since my platelets have been within normal parameters. It's a horrible feeling and at it's worst I really thought I was going to pass out. Some haematologists seem to dismiss this as not being part of our MPN, mine believed it was after sending me for brain scans and nothing untoward showed. I hope once you are given meds you get some relief from it too. All the best PeachJ