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IIH DIAGNOSIS FEELING VERY POORLEY

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charlotte99756
charlotte99756

At the end of April I woke up one morning with a headache which had never went away , a throbbing pain headache affecting my vision. After 2 weeks I visited GP and optician optician referred me  urgently to neurology. The day after I ended up calling for an ambulance I woke up with shooting pains in my head I couldn’t see properly I was crawling on the floor in the hospital being sick screaming in pain. They did mri and ct which was normal then next step lumbar puncture the result was 31.5 they started me on Acetazolamide and sent me home with painkillers , still not getting any better had all visual field test which the outcome was grade 1 papilodema (if that’s how you spell it) Then another lumbar puncture to see the pressure because I was still experiencing severe symptoms , Lumbar puncture was 18 , so tablets are working got to wait to see the neurologist again in a week does anybody have any advice still feeling very poorley and drained , my body is so tired , I feel like my vision is getting worse I see tiny black spots lots of them which are there constantant vision is blurred most days . They have started on naproxen . Any advice ? Thankyou x

1 like, 5 replies

5 Replies

  • JustRuth
    JustRuth charlotte99756

    Posted

    I'm glad things are improving. I suggest seeing an opthalmologist for your eyes. You may need further emergency. I know with me,the IIH affected my eyes very badly because if the pressure on the nerves of my eyes. Those side effects stay even after the IIH has gone. The opthalmologist can really help

    • charlotte99756
      charlotte99756 JustRuth

      Posted

      Hi Ruth , things arnt improving as in feeling well sad unfortunately I feel terrible every day . What is your experience with IIH? My eyes are very achey too today! I have been trying to read up as much as I can about it everybody whoes stories I have read seem to have the same outcome and severe symptoms Thankyou for your reply.x
  • JustRuth
    JustRuth charlotte99756

    Posted

    Oh I'm so sorry to hear that! I know how awful it is.

    I started off with pains down my neck and arms followed by severe terrible nausea and headaches. I few days later I experienced double vision and tinnitus (ringing, pulsating in my ears). The doctors took weeks to understand what was going on, eventually when things were getting worse I was referred to a neurologist. He did an MRI and lumber puncture. My opening pressure was somewhere in the late 30's early 40's. The MRI showed pressure on my eyes. He sent me to the ENT, gyne, audiologist and opthalmologist in order to rule other possibilities out. Everything came out clear except at the opthalmologist. They did all sorts of test for my eyes and all results showed that there was severe pressure on the nerves of my eyes. My neurologist and opthalmologist communicated back and forth and diagnosed me with IIH and put me in the highest dose of acetazolamide. I was having to go for checkups every 2 weeks and then once a month and then every few months. My symptoms decreased slowly. After about 4 months the double vision had gone and was left with slight blurred vision. My eyes were definitely the worst affected. It was terrifying to drive, it would appear as though the oncoming traffic was racing towards my side of the road! The damage to the nerves even gave my eyes a bit of a squint.

    After doing exercises with my eyes the squint was gone. I also experienced pains in my eyes, a sort of pressure feeling. And headaches were also behind my eyes.

    After about 9/10 months the symptoms went away almost completely and the doctors decided to slowly taper my medication down. I would still have to be in the medication for 2 years. I finished my medication 6 weeks ago and I see my neurologist next week for the final check up. I was diagnosed in January 2016.

    I saw all kinds of doctors throughout my whole illness and millions of tests! And 2lumbar punctures(spinal tap). It was the worse time of my life but I learnt a lot from it. I went through it with hope that it would be right in the end.

    I have the occasional headache every now and then but not at all as bad as I had experienced. My eyes are fine. The nerves have recovered but they are still slightly blurred but nothing that I need to worry about said my doctor.

    I truly suggest you talk to an opthalmologist about your eyes. It would be awful if it got worse. Maybe your medication needs to be higher.

    I wish you all the best and that you'll get through it. Takes things easy.

    Maybe search things to avoid with IIH, I know vitamin A can affect it.

    Ruth

    • charlotte99756
      charlotte99756 JustRuth

      Posted

      Yes I have pain in my kneck too and the sound of water in my ears!! Yes I have seen the opthamologist after having test and images o the optic nerve it shown they were swollen and affecting my vision. I am waiting for an appointment to see a neuro-opthamologist. My neurologist has put me on 1000mg acetazolomide now and the symptoms don’t seem to be easing , the eye pressure is worse this week than the headache , it really is taking over my life. I hope things go well for you at your final check , good luck ! It’s nice to speak to somebody who understands! Take care , Charlotte x
    • JustRuth
      JustRuth charlotte99756

      Posted

      I just remembered - the acetazolamide made me feel disgusting too. Feeling sluggish, week, loss of appetite,etc. So that can also make you feel unwell.

      xx

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