Meet our iih champs

CEO/Founder

It started in 2017 while I was in school. Being a student, mother of 4 and a wife during that time I was experiencing very bad migraines but I overlooked them. Until one day I was driving and I experienced what’s called a blackout. My vision went out for a few seconds. That was very scary so I knew something was wrong. I went to the doctor and I was told that I may have strained my eyes during school and to see an eye doctor. I went to the eye doctor and my optic nerves were swollen really bad. I was immediately sent out for an MRI. I was diagnosed from that point. My life had changed from that point. I was prescribed diamox to help decrease the fluid and caffeine pills. Those medications had me very sick. In the beginning I was vomiting often, confined to the bed, I couldn’t stand up for long. My symptoms got worse so I had my very first lumbar puncture where my levels were very high. The fluid was drained and a few days later the fluid built up again. Of course I had another lumbar puncture. I had an intracranial angiogram and a Stent was placed in the left side of my vessels because they were narrowing. My symptoms were still increasing and I was at risk for loosing my vision so in Aug of 2018, I had surgery, a Ventricular Peritoneal (VP) Shunt placed in the back of my head. After surgery I had some relief but my VP shunt malfunctioned so in 2019, I had a Lumbar Shunt placed in my lower back. There were a few complications because now I have both shunts so I had to have a valve placed on my right side to find the median between both shunts. I experience chronic migraines daily with some days being better than others. I’ve learned to live with them over the years. It hurts when I cough and I get dizzy often especially when bending over. The neurologist (headache specialist) manages my migraines. I see a Neuro-optlamologist and I’ve gone through a lot of treatments and medications. From Botox injections (31 needle sticks around my head, neck and shoulders), Migraine injections (Ajovy, ), Ketamine infusion(hospitalized for 3 days). I’ve had about 12 lumbar punctures total. I’ve taken every medication that I was given but most of them makes me feel worse. I was diagnosed with Trigeminal Neuralgia which adds on to everything. I still am sensitive to light and loud noise so I wear ear plugs often. When the migraine increases I go in a dark room, put on ear plugs and light a candle to relax. I try to be as normal as possible. When someone asks how I’m doing I always say that “I’m ok”. Since this is a neurological disorder people can’t see what I’m going through. I created this foundation to bring awareness to this rare condition. To allow others to learn and share their stories. As someone living with IIH sometimes it’s great to know that you’re not alone,to be heard but definitely not to get sympathy from others. I’m not 100% health wise but if I can help others then I feel my mission is being accomplished. Thanks for allowing me to share my IIH story. I’m living with IIH, what’s your Superpower?

IIH CHAMP

Headache…it all started with a headache.

In early December 2022, I went to my eye doctor for my routine scheduled appointment expecting to have a slightly different prescription, choose new frames for the year and pay an overpriced bill for enhancements for my lenses and new contacts. Instead, my doctor noticed fuzziness on my images behind my eyes and asked if I was experiencing headaches. I responded yes and attributed the pain to my current job, being a mom and wife. The doctor proceeded to perform tests and noticed the vision in my right eye was irregular and immediately referred me to a Retina Specialist. We made the appointment together and I quickly traveled to the office while calling my husband and brother to make arrangements for my daughter.

After imaging and tests with the Retina Specialist, he was unsure if I had a brain tumor or a condition called Idiopathic Intracranial Hypertension. I was terrified because the two were considerably different and the only way to get an answer was to go to the emergency room right away. My husband and I traveled to the ER and left without answers due to it being overcrowded and I had to return home. During this entire time, my headache had gotten worse and over the counter medication didn’t seem to help. We tried again the next day and I was diagnosed with Idiopathic Intracranial Hypertension. The Retina Specialist had given me a note to pass along to the ER doctor and after she read it, she quickly ordered a CT scan of my brain. She also performed a failed bedside spinal tap and I then was taken to radiology to have another which helped alleviate the pressure off of my brain and behind my eyes. I think it was the direction of the eye doctor then Retina Specialist that accelerated the process and in the end, the diagnosis.

Recovery from the spinal taps was rough and I later learned that I possibly had a leak in spinal fluid which caused a delay in recovery. I was unable to stand up for more than 15 minutes for about a week. I had to lay down most of the day. I could only sit up to eat and do minimal tasks. The areas of the incision was sore and the procedure only helped my headache for a few days. The medication prescribed also had side effects that impacted my daily life like diarrhea, drowsiness, ringing ears, loss of appetite and scattered thoughts. After a while, my body got accustomed to the medication and I was able to manage but I had to create a routine.

Fast forward to January 2023, the medicine is helping with the headaches but my body is taking time to adjust. My diet has changed as I am not able to eat a lot in one sitting and I have to break my meals up from three times a day to around six times a day with smaller portions. I am also in my last semester in a masters program and student teaching with second graders. Around February or March, the medicine is no longer helping with my headaches which have turned into full blown 24/7 migraines. My neurologist prescribes a medication that helps but can only be used around six times a month so I use it to complete homework, if a migraine is really bad during my student teaching or to get through a class. Eventually, I meet with my neurologist and express my angst and she doubles a medication but it has the same side effects as when I first began the medicine and I feel like I am back at square one. After a few appointments and advocation, the neurologist advises that I get a brain stent. First, I undergo an exam called an Intracranial Angiogram. You are semi conscious during this procedure and the surgeon goes through your wrist or groin to test the blood flow pressure in your brain to see if the stent will be a good choice. Full recovery from this procedure was about two weeks as they made incisions in my right wrist and both sides of my groin since my wrist was too small to check the pressure. Eventually, I underwent the stent surgery and after recovery, it was the best decision I ever made. My migraine slowly fizzled out, the ringing continued, and I am hoping the vision in my right eye returns to what it once was.

I am not sure what really caused this to happen to me. I never considered myself to be an excessively overweight person even though I did begin to gain weight before this condition struck my body. It has taught me to slow down, ask for help when I need it and things don’t always go as planned.

IIH CHAMP

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.

IIH CHAMP

I was only going for a routine eye exam. I became concerned when my ophthalmologist had to step out to consult with another doctor…after just a few minutes they returned and let me know that my optic nerves were swollen. I’m not sure what that meant at that time, but it made my heart beat fast. They then proceeded to tell me that it indicated something going on in my head..something along the lines of something causing pressure…they asked if I hit my head recently, if I hear weird noises in my ears, or if I experience tinnitus. I became a nervous wreck. They told me my next step was to get imaging done…imaging of my brain. That’s one of the scariest things you could hear. I started looking up things on google, and went straight to the ER.

The doctors there were so kind. They didn’t hesitate after I explained my situation.They gave me an eye ultrasound, and Brain CT. The brain CT was normal, but the eye ultrasound confirmed my eye sheath length, which was slightly abnormal in size. They diagnosed me with IIH, and prescribed me diamox, and gave me words of encouragement. They said hopefully by the time you finish this bottle you don’t have to take them anymore, and to follow up with the opthamologist. My life was never the same after that, and certain symptoms began to make sense. My head throbbing, and pulsating, feeling like a balloon, the sound of water going down my ear, sensitivity to noise or bright lights. I thought it had been a migraine. The exhaustion, or sometimes clumsiness too. The feeling of being off balance.

I thought it was because my iron was low..Fast forward to my first follow up with the ophthalmologist, I was moved to a different department.I was seeing a neuro-ophthalmologist, who just so happen to be the Professor of Optometry; Vice President for Strategy and Institutional Advancement…he went over my chart, and let me know he agreed with my diagnosis from the ER, and the medication prescribed. I was also informed that my optic nerves had slightly improved from taking the medication for 30 days…he was very forthcoming and honest. I was told we’re going to start with the basics of losing weight, and taking my medication consistently..also coming in more often to monitor my progress, and test my field vision too. I immediately went to work. I didn’t want to have this disease so bad or didn’t want to get the non-invasive treatments. The medication started making me sleep 16 plus hours a day. I had no energy to cook or clean. I have an 8 year old, so that was really tough.I had to get a pair of shades, and night vision glasses just for outside and driving. I researched food, and activities to avoid this disease.

I looked up real people's situations on Reddit, and tik tok. I lost a total of 85/90 pounds. I had always been slim, but due to mental health, I had gained about 90 pounds in my mid twenties. My doctor slowly began to wean me off diamox…and as of January 2023, I showed signs of being in total remission, so I was completely taken off diamox. I still need shades, and experience tinnitus, but not as much as I have in the past. I've also recently seen a neurologist for headaches….she also wanted to check my brain, and did a very thorough BRAIN and optic orbit MRI’s this past May. Nothing acute was found, but findings indicated IIH. My headaches came back from a wisdom tooth that needed to be pulled. The MRI’s were just another confirmation of my diagnosis. I’m glad God has led me to Doctors that really care. It’s still an ongoing journey. I’m taking it one day at a time.