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Hi im new to this site and just been diagnosed would love to hear everyones experience plse

Posted , 3 users are following.

sarah53175
sarah53175

Just been diagnosed with iih and still in shock to be fair would really appreciate some support off here off other group members please

0 likes, 3 replies

3 Replies

  • sparkleyeyes06
    sparkleyeyes06 sarah53175

    Posted

    Hi,

    I was diagnosed about 6 weeks ago, trust me the shock wears off! Have you been started on any medication at all? It's a scary diagnosis isn't it? Bit unsure as to what lies ahead! Have you had an LP at all? Xx

  • craig85595
    craig85595 sarah53175

    Posted

    Hi Sarah sorry to hear that, our 15 year old daughter got diagnosed 3 moths ago, she has had constant headaches for three months pain scale from 6 - 9 . Doctors have her on diamox to try and remove some fluid.Do you know of what pain relief works
    • sarah53175
      sarah53175 craig85595

      Posted

      Hi craig

      Your daughter is only young to be dealing with this condition😩

      I saw the neurologist whilst in hospital and he told me weight loss and diamox which im on now and surprisingly enough he said I should stop all painkillers as I was on codeine paracetamol and oramorph I was obviously very sceptical about this but he assures me that after 6 days the pain will ease!

      Well to my surprise Im actually feeling much better and the pounding in my ear is becoming less prominant

      Is your daughter seeing a neurologist?

      Hope this helps you all x

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