Hi, my name is Latrice.
This is my IIH story.

I always suffered from headaches and migraines as a kid. In 2013 I was having really bad headaches. They were worst than my normal migraines. The pain I felt was one of the worst head pain I ever felt in my life. It felt like someone was squeezing my skull with their bare hand. It would last hours sometimes days.


I would go to the ER and spend hours at the ER but they always found nothing. They always brush it off as a regular migraine. I kept going back and forth to the hospital.

The pain would lasts sometimes a few hours or a few days. The pain and the pressure were so bad in my skull , ear , neck, eye, & throat it literally would knock me off my feet sometimes. I couldn’t do anything but cry.

May of 2015 I saw a new ENT because of the constant ringing, pressure, noise, and neck pain I was experiencing. The ENT doctor told me my previous CT scans and X-ray looked fine. I immediately broke down. I explained how much pain I've been in. The doctor performed a test and he cut open my ear drum. Clear fluid came running out immediately that looked like water. It came out fast! The doctor said go to the ER
Immediately because that is brain fluid.

I went to ER and they admitted me overnight for observation.
There I was officially diagnosed with IIH in the hospital (Springfield IL). The ER had me do a follow-up. I was told I need brain surgery. The doctor referred me to a surgeon in Chicago to perform the surgery. They found a big hole in my skull . My brain had herniated. The doctor said that I needed to have a craniotomy and replace the bone in my skull.

December 22, 2015, a few days before Christmas I was sad and so scared that I had to have my 1st brain surgery. This was so hard for me being away in the hospital while my six children were at home. My kids dad / my ex fiancé was there at the hospital with me comforting me the whole time. That surgery lasted almost 10 hours. It was so hard to do around the holidays. I stayed there seven days. I was prescribed Diamox. This medicine is a diuretic that helps stop the production of CSF fluid.

The following year, the same thing happened again. The doctor said I need another surgery. This time it was Nov 2016. My doctor schedule the surgery a few days before thanksgiving. I didn’t understand why me. Why do I keep needing to have major surgery to fix this issue .

After that surgery I still suffered through the pain. Year after year. I refuse to believe this is happening again and again. I was in denial. I refuse to go to see a doctor, ER, or a surgeon again for the third time.

So after constant pain my family pressure me to see a doctor. I made an appointment. I was very overwhelmed because I dealt with disease along with other health issues, and other surgeries and my body and mind was tired. But I keep fighting.


In 2020 I was told I needed 3rd surgery. I went into a depression. I couldn’t believe this is happening again. After my surgery a group of doctors came to my bedside. They said I needed to do a follow up with vascular surgeon ASAP. It was related to the blood vessels in my brain and I needed a stent. My blood vessel in my brain was very narrow. It was pressing on my nerves and causing some restriction. The flow of blood which is part of the reason for skull pain and pressure.


It’s 2023 and I still haven’t gotten the shunt or the stent. It’s due to me having other health issues. I feel tired all the time. Pain and nauseous everyday. Aldo, frequent bathroom visits. IIIH has my vision sensitive to lights, loud noises, balance, and I’m very forgetful all the time. My IIH makes me feel like I have a brain tumor with the constant pressure in my skull.

To help me cope, I have joined many support groups on facebook with others around the world who are experiencing the same thing.

Latrice
 (IIH Champ)