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IIH symptoms

Posted , 4 users are following.

charlotte99756
charlotte99756

Hi I am currently being treated for IIH. I have had a bad headache and for the past 2 hours I have had a pulse in my eye... is this a symptom of high pressure? 

1 like, 6 replies

6 Replies

  • JustRuth
    JustRuth charlotte99756

    Posted

    Hi Charlotte

    Do you say you have a pulsating feeling in your eye?

    IIH definitely affects your eyes. I never experienced any pulsating but I did have pain and blurred/double vision for a while.

    I would say that it makes sense that the pulsating is a symptom of the IIH.

    Ruth

    • charlotte99756
      charlotte99756 JustRuth

      Posted

      Yes had a really bad headache all day and around 2 hours ago I started to feel and see a pulse in my eye if this makes sense sad so fed up of feeling like this , my vision is definatley deteriorating rang eye hospital today still waiting for an appointment but my consultant is away for 3 weeks !! I’ve had my acetazolomide and just taken some painkillers will see how I feel hopefully they will kick in , it’s just worrying because it’s your eyes. Also have you experienced black spots in your vision? Hope your well Ruth x
  • Sway
    Sway charlotte99756

    Posted

    Do you guys know anything about a csf leak? I just had one fixed and they think its from my IIH and I was told Fixing the leak may cause the IIH to get worse and the past 4 days my headaches are so bad my right eye wants to stay shut. I was also told i would probably need a shunt and i really really don't want one. I'm waiting to hear back from my neuro surgeon. I see him the 19th which would be my follow up after surgery for the csf leak but i think i need to see him sooner so I'm waiting on a call.

    • charlotte99756
      charlotte99756 Sway

      Posted

      Hi I’ve not had a csf leak before , what caused this and what did they do to fix this? I’m new to all this really... had 2 lumber punctures I’m under a neurologist waiting to see a neuro ophthalmologist regarding vision and neurosurgeon regarding shunt if no improvement in my symptoms.... Hope your ok x
    • Sway
      Sway charlotte99756

      Posted

      From what I remember the hole was caused by the IIH i think. They went through my nose to fix the hole but they had to cut fat from my stomach and then cut tissue from the inside of my nose and use that as a patch. I was told because the pressure was so high in my head the fat would not stay in the hole. A little piece of my brain was showing. So they kept having to drain the csf from my back because i had a drain inserted in my back as well. Sitting here watching a movie i noticed my.right eye is a little blurry/ double vision. Which i never had before. So I'm a little concerned but my doctor called and said if I'm not.leaking he will just see me the 19th. I see my ENT again on the 17th to get the rest of the packing out of my nose.

    • Ilovemykidsgs
      Ilovemykidsgs Sway

      Posted

      I had a CSF LEAK sounds like we had a similar procedure. My first procedure failed. I was rushed back into surgery the next morning and it was done again but it was a little more aggressive. The first patch slipped because of the angle. My surgery was about 11 weeks ago. They put me on diamox and it just about killed me. in six weeks, I lost 35 pounds and vomited until my body rejected everything including the diamox. Then the doctor agreed to change me over to something else. I am now on 50 mg of topamax twice a day. I am still sick from IIH. My symptoms are worse now that the patch is in place. I have been referred to a neurosurgeon. That appointment is two weeks away.

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