Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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does anyone have this symptom?

hergma
hergma
hello everyone. I am new to this support group. my 14 yr old granddaughter was just diagnosed with IIH on 12/27/2013 by way of lumbar puncture. Her opening pressure was 55. She was started on Diamox. She did well since then, but last week began having the same symptoms (dizziness, blurry vision, upper arm numbness/pain, headache, slight nausea). Her neurologist chose to do another LP on her and her pressure was above 50 again.
Since the LP last week she has complained a few times of feeling pain in her head when she talks... says each word spoken causes a pain (or at least odd sensation) in her head.
Anybody out there who has had this same experience? pre or post-LP?
thanks so much.
deleted_user
deleted_user
holding your breath, coughing etc is generally known to spike pressure in IIH and cause increase in headache symptoms, could it be that your granddaughter is so sensitive at the moment (and the pressure is high) that the amount of breath holding that goes on when she speaks is enough to hurt??
I am not medical and am also quite new to IIH so others might have better ideas.....
hergma
hergma
yes, that does sound feasible. I was wondering if it could mean her pressure was high again so soon after her last LP which was only 5 days ago. thank you for taking the time to respond. I'm feeling a bit desperate on her behalf... :(
mary1973
mary1973
Hi and welcome to the boad, sorry that you have to be here on behalf of your grandchild. Well, its possible she could be suffering from a low pressure headache from the LP. How does she feel when she lays down?
Sophiasmom06
Sophiasmom06
yes, even just talking can create a Valsalva and I experienced that before my jaw surgery. since the jaw surgery my valsalva trigger is gone. all my life I had a fear of public speaking and now I know it was probably just anxiety from my brain getting squeezed every time I tried to project my voice.

has your granddaughter had braces?
hergma
hergma
Hi Sophiasmom. thanks for your response. I'm not familiar with the term valsalva. No she has never had braces.
hergma
hergma
the neurologist believes these most recent headaches (since the last lumbar puncture) have been low pressure headaches. He said to have her drink LOTS and LOTS of water and take Excedrin Migraine 3xdaily....
mary1973
mary1973
Low pressure headaches are no fun, lots of water and caffiene, keep her laying down, flat, only getting up for restroom. Each lp Ive had I get low pressure headaches, they take 3-4 days of laying and fluids to get better.
Sophiasmom06
Sophiasmom06
http://en.wikipedia.org/wiki/Valsalva_maneuver
coughing, grunting, holding your breath, shouting, singing, laughing, crying, even speaking create a valsalva maneuver, which increases ICP.
RN4408
RN4408
Oh, your poor granddaughter. So sorry she is going through this. Those are some pretty hefty pressures. There seem to be a lot of odd symptoms associated with IIH that are not officially recognized by doctors, people on this boards describe all kinds of noises and visual abnormalities. If it is indeed a low pressure headache she is now having, I've been there, it is pretty miserable but should improve after a few days. Hope the diamox starts to help soon. Take care.
hergma
hergma
Thank you RN4408. Yes, it apparently was a low pressure headache. She had it for nearly a week after that last lumbar puncture. I feel like I'm holding my breath wondering when/if she'll start feeling bad again. Thank you for your compassion. It hurts me so much for her to have to go through this... and I'm so sorry everyone on this board is having to suffer from IIH also...