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Intercranial hypertention advice

Posted , 3 users are following.

estherlilyana
estherlilyana

Hi, I was diagnosed with IIH in 2014 when I was pregnant with my son, but over a year later it still hasn't gone and I'm 10 x worse.

I recently saw a different neurologist and after a 5 min consultation she said I didn't have it. My eyes showed no swelling but they can be so painful with the slightest movement. When I went for my opticians appoinent they made me do the pressure test 8 times as it was soo high.

Iv also had a MRI which was fine.

Has anyone else had this?

I suffer from extremely painful headaches and dizziness, loss of balance and tiredness. Has anyone else had no swellig behind the eyes but confirmed IIH? Really appreciate it. Thanks

0 likes, 3 replies

3 Replies

  • estherlilyana
    estherlilyana

    Posted

    Ps Iv also had lumber punctures in the mid thirties.

    Plus I'm pregnant again which has also heightened my headache :-( thanks

  • elgmotionless
    elgmotionless estherlilyana

    Posted

    I went through this in decrmber and earlyee. And just today I an starting to see black dot things, as thought there is something swimming around. Just wondering if it is something I should be concerned about or whether it could be that I didn't get much sleep last night ?
  • Magicsparks
    Magicsparks estherlilyana

    Posted

    If you are unhappy with your current treatment seek a second opinion, are you UK? You can ask your GP to refer you to another hospital, the national hospital in london is excellent.

    Yes you can have IIH without papilloedema (pressure at the back of the eye) and the pressure on the eye is not always visible, i too had painful eyes but no PAP so they would say i did not have IIH despite high pressure on LP.

    I started fighting and a chance allowed me to go private, that Neurologist agreed i have high pressure and recommended surgery, i then took his medical report to different Neurosurgeons, then i asked on a facebook group if anyone had LP shunt surgery without eye issues, was given the name of a surgeon and he agreed to do the shunt just like that.

    I am now 7-8 months post LP shunt surgery 90% better and improving more.

    Have they ever put you on the medications for IIH?

    There are two charities that have excellent information IIHUK and IHRF

    You may have to take charge and do the doctors jobs for them, if you want a referal to a specialist you can ask your GP to make that referal, they cannot say no.

    Best of luck xxx

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