Author Topic: IIHer without Symptoms  (Read 1901 times)

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Offline hatoon

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IIHer without Symptoms
« on: June 08, 2016, 05:55:51 PM »
Hi Everyone, I am new here. :) :star
My name is Hatoon, i wanted to share my story as i have read so many posts but did not find any similar situation as mine (or maybe there is, i dunno).

It all started 6 months ago, when i was on the airplane trying to pop up my ears from the airplane pressure, as i did that i suddenly hear the sound of my heartbeat in my right ear *Wooshing* being that i was paranoid about it i could not help but to go to the ER immediately to see why as this never occurred before the ER told me i need to see an ENT specialist. so i did. The ENT told me that i had Tinnitus and put me on so many tests (Hearing tests,etc) to see the level of intensity he then concluded that what i had was not Tinnitus for the fact that it comes and goes and that it was not consistent 24/7. He did not suggest anything and told me to take some meds.

I did not believe that what i was experiencing was "nothing" so i immediately decided to see a Neurologist (I dunno why but i had this gut feeling that something wasn't right). She told me that she wanted my eyes to be checked and when that happened they saw that my Optic Nerve was swollen but my vision was perfect. She then asked me if i had any headaches & when i said no as she looked surprised, she was also surprised when my field test (Vision Test) turned out NORMAL. She finally asked for a Lumbar Puncture (Spinal Tap), and they found out that my pressure was high *35*. and she then requested an MRV/MRA/MRI all at once. They finally saw that i had TRANSVERSE SINUS STENOSIS severely on the right side (where the whooshing sound was) and mildly on the left. I was then put on Diamox to help reduce the pressure.

I decided to write this post for anyone who is not expeirencing any of the common symptoms to know that whatever you have, or any changes you experience go check it out. if it was not my paranoia i wouldn't have found out i had IIH. always trust your gut feeling.

The doctor too was surprised that i do not have any of the common symptoms of IIH but she was glad i caught it super early before all the headaches etc.. began.

Note: She even mentioned the fact that i could've been born with it and that my body adjusted to it since birth and thats why i might not have had any common symptoms but she can't be so sure.  <3 <3 <3

Offline dabirg

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Re: IIHer without Symptoms
« Reply #1 on: June 09, 2016, 06:44:50 AM »
Hi Hatoon, interesting indeed - thank-you for sharing. 

Welcome to the group.

My daughter has severe IIH but doesn't get headaches.  sadly she has suffered bad vision loss - so glad to hear you haven't despite having pap.

So pleased for you that you persevered and got treatment before any harm was done.  wish I had found a way through for my girl - I too was certain something was wrong but got turned away by the hospitals and opticians.