Vascular disturbance

Hi. Sorry to trouble you all again but would love some advice I have jak 2 + ET and am on hi 500 per day. Platelets are about 450. I was driving today and had an episode of wiggly lines in front of my eyes which lasted for a few minutes and them disappeared. I am not sure what to do about it as I don't have s review appt until September. Has anyone else had this and what did you do?

I would love some advice

Thanks. Margo

10 Replies

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  • Not sure if this helps.

    I have had the odd episode of 'scintillating scotoma' which starts like a half circle shimmering zig/zag pattern and eventually joins up to a full circle. It only lasts a few minutes, I don't get a headache with it like some do. Also have ET jak2+.

    My haematologist asked me at my first appointment if I experienced any visual disturbance, so explained this to her which she noted but didn't comment on any further. If you're worried I'd see your GP in between appointment with haematologist.

    Mary x

  • Thanks Mary that is reassuring. I had no headache either so will go to the go when I can get an appointment I hope you are keeping well. Margo

  • Hi Margo, I also have had something similar, mine have happened, when I have inadvertently looked towards the sun of a really bright light, and also it has happened when driving causing me to pull over, I can only say it was like some kind of aurora with zig zag lines that even when you close your eyes they are still there and when they start to disappear it's almost like they seem to move away from the centre and out to the side of the eyes then they are gone, I do not get a headache, just feel slightly sick afterwards, have mentioned to my GP but they do not seem bothered, and do not think it is anything to do with my ET, and that I could be stressed out about something, this always seems to be there last resort, telling me that I am stressed.

    Sorry I can't help, but know how you feel when you get one, quite unnerving

    Jean

  • Hi Superwoman. You describe what I felt exactly right to the way it left. I think doctors put these things down to stress when they don't know the answer

    Thanks for the reply. Will mention to hemo at next visit. Margo

  • I was told due to high HCT/Hb and fairly common: can also be caused by stress without any MPN

  • Hi Margo

    I think this is one of the symptoms of MPD - it was one of the symptoms I had before I knew I had ET. I went to an optician who diagnosed migraine! I am on Hydrea 2x500 per day now, and don't get this very unpleasant experience quite so often. So unfortunately it seems it is just something to be endured rather than cured😢

  • I have had these often over the last 2 years and they are supposedly silent migraines. I usually feel better after a neck adjustment at the chiropractor.

  • Hi Margo ,yes i have had this ! Gp said its ocular migraine and with or without a headache , even my Gp gets this im not worried about it , with mine it didnt last long if this helps you best wishes Holly

  • Thank you all for the replies. I was really worried about this but you have reassured me that episodes like this are not uncommon Great to have the support of the group. Margo

  • I find the sun, bright lights, Christmas lights, traffic lights etc can set mine off. I use a warm flannel over the eyes. It helps.

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