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IIH

Posted , 2 users are following.

Cazzzzy
Cazzzzy

I was diagnosed with papillodema and iih last year I had a lumbar puncture and my pressure was 40 I'm struggling to get through the day always putting a brave face on for my partner and child, I suffer terrible migraines can hardly walk dizziness and I'm sensitive to light and sound and recently found out I have vision abnormalities an enlarged blind spot,there are times I have to close all the curtains or wear sunglasses is anyone else experiencing this x

1 like, 10 replies

10 Replies

  • marylou1234
    marylou1234 Cazzzzy

    Posted

    My my daughter Beth was diagnosed with idiopathic Intercranial hypertension a year ago...she has suffered chronic fatigue, irritability and like you is sensitive to light, something she never suffered with before, hope that helps your query..she is nearly 25...

    • Cazzzzy
      Cazzzzy marylou1234

      Posted

      I'm 27, and I'm exactly the same, I'm seeing my neurologist tomorrow at Salford royal the acetazolamide and propranolol isn't working and I had bad experience with lumbar puncture I'm to scared to have another the low pressure headache was hell xx
  • geeziex
    geeziex Cazzzzy

    Posted

    I have had iih for 5 years... I've had 6 vp shunt surgeries since August 2014 and 5 icp monitors. I also had an over draining lp shunt for the first 2.5 years. I also struggle like this everyday. I find that support from others helps and also having a professional to call helps too. My hydrocephalus shunt nurse is amazing and always gets me sorted. The charity shine are fab too xx
    • Cazzzzy
      Cazzzzy geeziex

      Posted

      Wow that's alot of surgeries, I had migraines for so many years and all these bad symptoms but my Drs ignored me, my partners sister said I should have an eye test done as I hadn't had one in 14 yrs and that's when they found papillodema in both eyes, I try to sleep off the pain xx
  • geeziex
    geeziex Cazzzzy

    Posted

    It is and it's been hard and although my pressure is now under control my symptoms are still bad and I still have daily headache and pulsatile Titinus. You just need to find a doc that can help. Request a second opinion. I see a neurosurgen and a neurologist and an opthomologist. I see them all quite regular too. Being referred to a neuro physochologist and the pain team has help me lots.
    • marylou1234
      marylou1234 geeziex

      Posted

      I was told about neuropyshologist by Shine, but the neurologist hasn't referred my daughter or been at all helpful..if we ask questions she makes light of tin u end up feeling more unsure than when you first spoke..Beth asked about the back.pain she is suffering from, the anxiety and tiredness, tenderness to light ext...just blank looks back and no direction at all..can we ask for a different specialist do you know?..Beth still lives,at home, she struggles to get motivated and often finds going to work a real struggle..is this normal??..want to support her and not push beyond what she is,able to do, but don't want the condition to rule her life...hmmm..ideas??
    • Cazzzzy
      Cazzzzy geeziex

      Posted

      I see my neurologist monthly and opthamologist every 3 months now, I am always being told that weight loss is the cure I personally don't believe that as I have always suffered all of this since I was a teen and stayed at 9 stone I only gained weight in the last year as I am on medication for anxiety and ptsd
    • geeziex
      geeziex marylou1234

      Posted

      Apparently weight loss helps but I personally think that this is used as an excuse for doctors as they don't really know what causes it. I too get exhausted by doing even little things... We don't want the condition to rule our lives but sometimes it's unavoidable. The best thing to do is meet it half way (if u know what I mean lol) try and learn what u can and cannot do and resting plenty and drinking lots of water. I hope this helps x
  • marylou1234
    marylou1234 Cazzzzy

    Posted

    Beth has lost weight, but she too is suffering with eyes where she is getting dens active to bright lights...her back pain has increased and she is constantly tired and unmotivated...I think it's the 'not knowing' that escalates this, I just wish there was someone who could tell her what to expect and, apart from the obvious sight problems that might occur, so she wouldn't worry over what might be a totally unrelated issue...Anyone had further support, or at least been directed toward some..?.Beth definitely hasn't..
    • Cazzzzy
      Cazzzzy marylou1234

      Posted

      The only help I get is from partner and family doctors don't really seem to care, to other people I must seem lazy because I rarely open the curtains because of the light and everyday is different and I'm lucky if I get out twice a week because I get brain zaps as I call them which I lose my balance with, there doesn't really seem to be help anywhere xx
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