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Idiopathic Intercranial Hypertension

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lship13
lship13

I'm a 24 yo female.

Migraine with aura started 3 years ago.

Aura symptoms include, but are not limited to bright zig zags, one sided face, head and arm, visual dark patches, ect.

2 weeks ago, my left body went totally numb and I could not use my hand. Blurred vision occured, then sudden "out of body" feeling, then headache. The worst headache of my life. It's still here but it is dull.

I keep seeing flashes of light, imaginary lightning strikes, black dots (floaters), blurred vision out of left side of left eye, darkness.

Right eye is permanently unusable (I only see a blur out of it, always have)

Visual disturbances come and go.

Blurred vision is regular.

Nausea is almost daily.

Night sweats, waking up 5-10 times a night, every night.

Pulsating in ear occasionally, ringing often, muffled hearing often, total loss of hearing in one ear is occasional.

I keep hearing and feeling what feels like fluid being squished/squirted at the base of my skull/neck.

I started stuttering occasionally in the past 6-8 months.

Constant exhaustion, anxiety and pain.

I need help.

0 likes, 5 replies

5 Replies

  • hollygb66
    hollygb66 lship13

    Posted

    Hi Iship13! I know the feeling you're talking about. I had that feeling for 3 weeks in Oct '12, then it switched to a different horrible feeling.  One question, do you feel better lyng down? Or does your head hurt worse when you lie down?  

    I ended up with intercranial hypOtension. I didn't know what it was, but it was caused by a spinal fluid leak!!!! It was a spontaneous thing.  I had a blood patch and was fine for 13 months.  Since Jan '14, I've been experiencing a milder version, but still debillitating.  I've had 3 more blood patches and feeling a little better each time, but still can't exert myselt and have a constant head pressure. Yes, every day, ALL DAY!

    Have they done much testing on you?  

     

    I'm waiting on a call to get in to a Dr at Duke. She seems to know what she is doing!! I'm 13 hours away from there, but she will be worth the trip. I hope.

    • devin42
      devin42 hollygb66

      Posted

      Hello did you go to Duke? Im at Duke. I had a few procedures today.
    • devin42
      devin42 hollygb66

      Posted

      Also mine is intracranial hypertension. High pressure in the brain. Ive been bedridden 7 months. So many drs and hospital visits. Where i live they dont know much about it . Ughh
    • hollygb66
      hollygb66 devin42

      Posted

      I haven't gone yet! My appointment is set for Oct 15!!! I'm excited and scared.  What procedures did you have done and which doctor, if you don't mind me asking.  I can't take Diamox because my problem is opposite of iship13.  It will make my head pressure worse.

      I'm praying iship13 has found a doctor to take care of her problem.  It sounds to me she is in high pressure from her symtoms.  The good thing about that, doctors listen to patients with INCREASED pressure. They don't listen when a person has pain from DECREASED pressure.  

  • devin42
    devin42 lship13

    Posted

    I understand. Have you been on diamox yet?
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