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HM &EA

Posted , 2 users are following.

joanne90460
joanne90460

Hi, been diagonised with HM & EA...all kicked off 6 years ago with a suspected stroke. Fast forward to now....been having an episode now for the past 8 days, I don't get the constant headaches but the severe tirdness, pins & needles, dizziness and unsteady on the feet. 

Been keeping a diary since December and I can see my triggers as: if I feel thirsty, hungry and even exercise. 

My doctors have no clue my Consultant is pretty good. I am taking 80mg Sustained Release Capsules 4 a day but more if needed for the HM and 250mg Diamox SR 3 a day more if needed for the EA. 

Im still working 12 hour shifts as a signaller....I find the shifts at time hard going, I am off on the sick due to this attack which came out of nowhere...I wasn't even working, chilled at home and bam.....so frustrating. 

My consultant is now sending me a letter with new medication and been told to rest...I can't sleep anymore that's all I do :-) 

0 likes, 3 replies

3 Replies

  • StevenRose
    StevenRose joanne90460

    Posted

    Hi Joanne,

    I suffer from HM too, I dont know what EA is though please can you let me know.

    I started getting HM nearly 2 years ago and they used to last over a week, until I started taking Flunarizine and now when I get an attack its usually 2 or 3 days and I am back walking again as normal.

    Yes, they used to admit me into hospital fearing I was having a stroke.

    the shift work is not good for our conditions I am told.

    Good luck and keep in touch please

    • joanne90460
      joanne90460 StevenRose

      Posted

      Hi

      EA is Eposdic Ataxia...its a condition not too dis similar to HM - I look drunk when I have an attack.

      with my HM I also get the White zig zag /straight white lines behind the eyes. 

      This has been the longest attack for a while....was off work for over a year on and off but now working again, but yes my consultant says 12 hours is not great with this condition, but I am off with rest days so work hasn't been a factor.!! 

      How have you been, what attacks do you have? 

    • StevenRose
      StevenRose joanne90460

      Posted

      I dont get any zig zags white lines in my eyes, but  they do hurt and I am very photo phobic when I have HM.  I go very weak down my left side, cant stand up on my own and can hardly talk when I have an attack.  But thankfully the attacks a shorter now since taking Flunarizine, my GP says that although it is probably an HM attack you cant be sure, so you have to call an ambulance in case it really is a stroke!
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