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Wobbley eyes

woodbine Community member Posts: 11,832 Disability Gamechanger
Having had problems with my eyes for 6 months I have seen a consultant this week who had some idea what the problem might be (I've forgotten the name of the condition) but my eyes shake from side to side and don't communicate with my brain the way they should, mainly due to brain damage caused by CVA's and TIA's plus 25 years of seizures.
I am being referred on to a more senior consultant but research tells me that there is probably no cure and my problems will get worse as times go on.

Luckily I am having my first appointment with a counsellor next week as my depression has gone through the roof.

As my vision worsens I am finding it harder to use the internet and still can't read even with glasses.
2024 The year of the general election...the time for change is coming 💡


  • Beaver79
    Beaver79 Community member, Community Co-Production Group, Scope Member Posts: 22,285 Disability Gamechanger
    edited July 2023
    I am so sorry your eyesight continues to be a problem for you. You never know the senior consultant might come up with something and new drugs are being developed all the time. I hope your counselling next week helps you. Take care. @woodbine
  • Sandy_123
    Sandy_123 Scope Member Posts: 52,934 Disability Gamechanger
    That's a shame @woodbine I had hoped the new glasses would help you. See what the consultant recommends and good luck with your councilling
  • chiarieds
    chiarieds Community member Posts: 16,137 Disability Gamechanger
    I wonder if the name of the condition is 'nystagmus.' Now I know we're all different, but both my son & I have this, tho fortunately just at the extremes of our lateral vision. This is due to a neurological problem too, but I have to say I don't feel mine has worsened over the years; I do have to constantly scan the ground in front of me when walking or I can have the odd very wobbly moment especially if walking on grass or the ground is a bit uneven.
    I suppose I'm trying to say that perhaps I've adapted to it somewhat, & hope yours won't worsen, or become as bad as you expect. There won't be a cure, but sometimes there are ways of learning to adapt. You know we all wish you well.
  • woodbine
    woodbine Community member Posts: 11,832 Disability Gamechanger
    @chiarieds  yes thats the name, I'd lost the paper I'd written it on, mine all started at the end of last year and if I'm honest over the last 6 months its got much much worse.
    I suppose it's not helped by the balance problems I'm having as well, but I do know I'm utterly fed up.
    I did read that Botox might be one solution but we will have to see.
    2024 The year of the general election...the time for change is coming 💡

  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
    @woodbine I'm so sorry you are going through so much. I do hope the appointments shed something good on a stressful situation. 

    I also hope everything goes well with the counsellor. Please don't forget the community is here to support you too <3 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • woodbine
    woodbine Community member Posts: 11,832 Disability Gamechanger
    As ever thanks all for your support, will keep you all updated with any progress xx
    2024 The year of the general election...the time for change is coming 💡

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