Hi everyone. I was diagnosed on April 1st 2014. It all started with a routine eye exam. I told the eye doctor that I had been having some flashy, kaleidoscope like vision. He asked if I was having headaches. I told him "Yes. I have a bad sinus headache almost every day" He took a look in my eyes, sent me for pictures of my optic nerves and then told me I needed to go straight to the ER. I was quite scared not knowing what was going on. I just knew at that moment that I had severe papilledema. I had an emergency MRI and when that was clear (no changes since 2010) I had my first ever spinal tap. They told me my opening pressure was 55+ as it had squirt out the end of the tube. My life had just changed forever. They talked to both a neurologist and a neurosurgeon. It was determined that I could not take meds for the condition as I already have kidney damage. I had another spinal tap 6 days later with OP of 46. I had an LP shunt put in on April 16th to save my vision. My OP on day of surgery was 40. So far the shunt is doing what it is supposed to. My papilledema has gone from severe to mild. I still get headaches daily but they are manageable for the most part. I still have buzzing and whooshing in my ears almost daily. I do notice it the most with weather changes. I am a 41 year old female. I have two sons ages 21 and 16. I am from Watertown, New York (way up north near Canada) USA. So far I consider myself lucky. I love my neurosurgeon. He was very thorough and spent nearly 3 hours with me my first appointment going over every symptom I have ever had in every part of my body. I also love my eye doctor. The neurologist not so much. lol I have had symptoms for years....probably at least the last 20 years. The neuro always brushed off my symptoms as atypical migraines or tried to throw new meds at me without finding out why it was happening. At my first appt after diagnosis he tried to put the blame on me. Grrrrrr He did try to lighten the mood by saying "You have all the rare diseases" I am also diagnosed with X- linked hypophosphatemic rickets diagnosed at age 5, mild chiari, sleep apnea and PCOS. I am quite used to surgery due to the hypophophatemia. I had both hips replaced in 2012. My 21 year old also has the hypophosphatemia (that I was nice enough to pass on to him) and has had 12 surgeries on his legs to date. He also has more severe chiari. My 16 year old is in the process of getting testing done for headaches at least 5 times a week and possible absence seizures. His MRI was clear. I at least know enough about IIH to push them if they do not find any other reason for his symptoms. Thank you for accepting me into this group. I am grateful for the support.  


 

Hello Tracy, and a very warm   

It sounds like you have hit the lottery.  Many people go for months, even years without a diagnosis yet alone getting relief.  And your two docs sound great.  That is half the battle.

As you read around the site, I think you will find that many of your symptoms are "classic" IIH.   And not being able to take the usual IIH meds is too!  

Feel free to drop by anytime.  And rants and raves are allowed too!  We understand the frustrations that tend to come along with this disease!!

A very warm welcome to our support group, I'm really pleased you found us.

I totally agree with Linda, your doctors sound a dream come true, which is rare for us to find. We have lots of info and if there's anything you're not sure of no matter how small, or what you think might be silly, ask away, that's what we're here for. IF you need to rant, rant away, we all love a good rant here, and the best thing is, we all understand and feel the same way.

Looking forward to reading your posts and getting to know you better.

Hi Tracy,

Yep it seems that you have really been through the mill! but things like OSA and chiari are often associated with IIH at least you have got a diagnosis now. your pressure was so crazy high it must be a relief for you! 
Bad sinus headaches was one of the things i suffered with, there is nothing like the feeling when you get your pressure down, and your whole face stops aching and you realize how bad your sinuses actually were eh now that they dont hurt any more? I hope that now you are able to move forward with you treatment plan, for you and your family.


Keren