Idiopathic Intercranial Hypertension - Meningitis Now

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Idiopathic Intercranial Hypertension

Twhite9118 profile image
7 Replies

Hi everyone! Long story short I had VM back in May. I have been experiencing these weird head rushes, almost like a pressure feeling where my hearing goes in and out (like plugging your ears and unplugging really fast). I also feel like my vision gets blurry and I can’t focus on anything. These “episodes” last about 30 seconds.l and happen when I stand up or lay down. A few weeks ago I had an episode and stood up and had clear fluid pour out of my right nostril. Almost like water and I heard it splash on the floor. Ended up in the ER and they found an arachnoid cyst and was discharged back home to follow up with a doctor. Saw a neurosurgeon yesterday and he is not sure if I even had VM and think I have idiopathic intercranial hypertension. I’m going to have another MRI and Lumbar Puncture soon to see. Anyone else have something similar like this happen?

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Twhite9118
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Christine86 profile image
Christine86

I had vm in 2015. And they found a cyst in my brain. My ears where plugged mostly for almost 2 years. Lying down the unplugged mostly. Now if i do to much or if i am tired they will plug again. My vision is of and on. Somedays its perfect one moment and other its blurry. I never heard about the diagnose you mention. I am curious. My symptoms did get better so i don't think i had the same but i do know the feeling and the awful pressure. Its a horrible feeling.

Jmac999 profile image
Jmac999

Hi - i’ve had two episodes of IIH before (age 19 and 31) before having Shingles VM 3 months ago. Doctors actually thought I was having another episode of IIH when I presented w headaches this time. But when LP reading was normal they investigated further and that’s when VM was diagnosed.

Have you had an LP yet? This is the only way to diagnose raised pressure (they can tell straight away when they’re doing it too).

Symptoms for me w IIH were similar to VM but came on (headaches, blurred vision etc) over months rather than 1 week (VM). The headaches were much more severe for me w VM and had sore back and neck too.

If it is IIH, then treatment that worked for me was LPs (to drain fluid), steroids, diuretics and low salt diet.

Good luck and fingers crossed you get an answer.

Twhite9118 profile image
Twhite9118 in reply to Jmac999

I had an LP back in May when I was diagnosed, pressure was 39 and the white blood cells were high. The doctor will order another MRI and LP, and then we will go from there. Hoping I’m just slowly still recovering from the VM, this IIH seems terrible from what I’ve been reading 😫

Thank you!!

Jmac999 profile image
Jmac999 in reply to Twhite9118

That’s a reading above average (25) ... not sure whether IIH just exists w meningitis or causes it etc. can see why you’re still struggling for a diagnosis and treatment plan. I am in Australia now but had IIH when I was here and when living in London. Can’t understate the importance of getting a neuro who’s dealt with it before... took a couple to find someone I could trust who knew what they were doing. Other issue I had w IIH is really bad vision impact (which can be long term if not treated) so if they aren’t doing visual field tests, I would be asking for them. (Pressure from IIH I had was around 60 and caused all the blood vessels around my eyes to burst (papliodeama - sp?)) so maybe worth asking for if hasn’t been suggested. I have no long term damage but they were very cautious about this during treatment and even after headaches subsided.

Twhite9118 profile image
Twhite9118 in reply to Jmac999

Ok interesting, this new neurosurgeon sounds like he knows what he’s talking about but we’ll see. I’ve seen an an eye doctor back in June and everything looked good. I’ll make sure to mention about doing it again. My vision is only bad for those short episodes I have and then it goes back to normal.

Byng profile image
Byng

Interested to hear of your experience. I had meningitis in January, and at the time they said I had intra-cranial hypertension. Also had a few days of right nostril dripping water. 8 months down the line, after a very good recovery, I have had 2 weeks of dripping right nostril, headaches, feeling rubbish. They say I have sinusitis and also idiopathic intra-cranial hypertension, slightly raised since January. I have a review tomorrow, but feel confused. Bit of a chicken and egg situ. Nose drip means I can't go out socially, most of time have that nostril plugged while I try to do housework.

BellaC79 profile image
BellaC79

Hi Twhite9118I had to write as I've had a very similar experience to you.

Have had tinnitus four years and ENT had no answers. Then this year had a bad headache with as I have learnt a positional headache. (Red flag) Basically when I bent over felt like my brain fell forward and pain for a few seconds. Or when I got up to leave a room got to the door like my brain then shot forward . Pressure heavy feeling in my head and my vision in right eye went blurry and had never improved. Have ended up with two more headaches and two a&e visits. The pressure has continued as even bending over to feed the cat it comes on, or when I take a shot of mouthwash and tilt my head back it comes on.

CT scan and MRI found incidental arachnoid cyst and cavum septum pellucidum et verge -very rare congenital condition) doctor had never seen it before himself. 😮my previous MRi noted possible idopathic intracranial hypertension. So now am waiting to see neurologist and neuro opthalmologist.

I'm not concerned re the cysts it's the pressure that I would be interested to see if you have managed to get to the bottom of / some relief?

They did mention a spinal tap and then decided not to proceed at the hospital when I was last in.

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