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I had IIH at 16. Sharing a bit of my journey.

Posted , 3 users are following.

JustRuth
JustRuth

Hi. Nearly 3 years ago, I started having symptoms of nerve tingling up and down my arm. Eventually I had the headaches which of course lead to the nausea. I went to my GP a few times and they just said it's a common migraine or a virus and gave me some meds. A few days later, I was looking arouses and I was seeing double. It got worse and worse throughout the day. The next few days it was permanent.

At this moment I had double vision, headaches, nerve pains and nausea. I went to my GP again and he suggested I see a neurologist. Unfortunately, it was extremely difficult to see one as it was the holiday period and all the doctors were away. Eventually I was able to find a neurosurgeon and was immediately admitted to hospital where I had a million blood tests, brain tests, MRI and others. They were eventually able to diagnose me with IIH and was immediately put into diamox.

Diamox:

Let me just say that this is prohibited the most horrible medication I've known. Yes it's worth it because I took away all my pain and symptoms. But the diamox had symptoms of its own. I experienced numbness, pins and needles, loss of appetite, weakness, etc.

With the condition, it also caused severe pressure on my eyes. The nerves of my eyes became weak and damaged, that they actually became scew.

I saw my opthalmologist and neurologist back and forth every 2-3 months. I've been on the diamox now for exactly 2 and a half years. Today I took my last tablet and I'll be seeing my doctor's for my final check-up in a month!

Extras:

For me, there the condition was completely benign. I had no characteristics that would normally bee associated with the condition such as overweight etc.

I started with 250mg diamox twice a day and that was increased to 3x a day a me then 6x a day. So just imagine all the side effects of the meds!! As I got better the doctors finally decided to slowly taper down the diamox. And now I'm diamox free.

I was 16 when I got sick and I did have to miss a year of school because of all the symptoms and the anxiety of all that was happening.

I just wanted to share my story. I know I've definitely left a lot out as I'm currently writing this at 3am and I can't sleep!

Please ask questions if you're curious

xx

Ruth

1 like, 4 replies

4 Replies

  • kerinoo
    kerinoo JustRuth

    Posted

    How are you doing now? I have not long been diagnosed and am struggling at the minute I feel like I'm going mad or got dementia? 

    • JustRuth
      JustRuth kerinoo

      Posted

      Hi

      I'm doing so well,thank you for asking. Everything checks out well at the doctor's after being off the meds for nearly 3 months now

      I'm sorry to hear you are struggling. What is it that's troubling you?

      Ruth

    • kerinoo
      kerinoo JustRuth

      Posted

      Only just been diagnosed so brain fog vision memory loss you name it I seem to have it at the minute. Glad you are doing well x
  • myreg10454
    myreg10454 JustRuth

    Posted

    Thanks for nice information. I have been diagnosed with the same (IIH) csf pressure 36.7 cm H2O. I was under DIAMOX 250 mg daily for last 2 months which made me feeling better. After last visit to my physician today i have been put to DIAMOX 500 mg daily for next 3 month. I am not sure why dose has been doubled and not even asked my doctor..

    my symptoms wear ....nausea, Headache, Intolerance of light, sound, a mild sound in ear. I was diagnosed with in 3 months of my symptoms.

    Any suggestion please..

    Thanks

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