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.