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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.

This is my IIH story.  I’m 47 and a mom of six children. At the time I was living in Springfield il. As a kid I always suffered from headaches and migraines. However, in 2013, I was having real bad headaches. It was one of the worst I ever felt. It felt like someone was squeezing my skull with their bare hand. I remember being in school(college) I was told if you experience the worst headache ever go to the hospital. I did immediately. Spent hours there but they found nothing. They brush it off as a migraine. I kept going back and forth to the hospital for years. I used to fall out, lay on the bathroom floor, or anywhere I could lay once the pain came. The pain lasts sometimes a few hours or days. The pain and the pressure was so bad in my skull it knocked me off my feet sometimes. Fast forward to May of 2015.  I saw a new ENT because of the constant ringing , pressure, and noise and neck pain I was experiencing. At the doctor’s office He told me my previous CT and X-ray looked fine. I immediately cried and broke down. I explained how much pain I've been in and how I’m not making this up. The doctor said wait let me try something else. He did a test and he cut open my ear drum. He said you may have a middle ear dysfunction. He said if clear fluid or infection comes out go to the emergency room. Once he cut me clear fluid that looked like water came running out. He said go to the ER now that is brain fluid!I went to the ER and I was told I needed to have brain surgery. I saw a specialist and they performed another CT scan. They admitted me overnight for observation. I was diagnosed with IIH. The hospital (Springfield Clinic) referred me to a ENT doctor in Chicago at UIC to perform the surgery. They found a big hole in my skull and I needed to have a craniotomy. I met with the ENT at UIC that dr referred me to see a surgeon at Rush hospital. At the time I was living in Springfield IL. I had to move back to chicago. I had brain surgery on December 22, 2015 on my right side that lasted almost 10 hours. I was prescribed diamox. Which is a diuretic which helps stop production of extra fluid. I had some relief for about 5 months. So the same thing happened but on my left side. In 2016 I was having the same symptoms. I had another surgery in November 2016. A few days after thanksgiving. My family from all over came to support me. I didn’t understand why I kept needing surgery and why it had to be around the holidays. I was still having pain all over the years. Iwas constantly sick. I was taking the medication and doing everything that doctors told me to do. In 2017, I suffered through the pain. I refuse to believe this is happening again. I refuse to go to see the surgeon. In Jan 2018, I went to see my ENT surgeon at Rush. I explained what’s going on. He noticed my voice sounded hoarse and very different. He asked how long. I said on and off for months. My regular dr on gave me throat meds. He had me do an X-ray. I had to rush and have surgery to remove the mass off my voice box they found . I used to have brain fluid draining my throat. It left my voice and esophagus sore or inflamed.  After my surgery the doctor confirmed my brain had herniated again and my skull was sinking sbd I needed another surgery. So here we are In 2019. I had my 3rd surgery on my top left side of my brain in January 2019. After that surgery and group of doctors came to my bedside in the hospital. They said I need to follow up with another surgeon. I ask why. They said it’s related to my blood vessels in my brain. I saw a vascular surgeon in March 2019 after I healed from my third brain surgery. The surgeon told me I need to have vascular surgery due to the vessel in my brain being very narrow. It was pressing on nerves and causing restriction on the flow of blood which is part of the reason for skull pain and pressure. He explained, They needed to open up my blood vessels with a stent but  first he wanted me to fully heal. They wanted my skull to heal so we decided December 2019. I got nervous and wasn’t myself mentally and it was the holidays I moved to January 2020 that  I will get it done. Well,  I  went to do my pre-op on Jan 29 2020 and they found multiple clots in my lungs so  they admitted me and I stayed for 3 days. They had to delay the vascular procedure to let me do six to eight month to take blood thinners to remove clots. Sept 2020 I went to see the surgeon and schedule my stent. Well I caught covid 19. The surgeon said we will wait till mid 2021 to give my body to heal again. Covid was hard on me. Especially since I've been through a lot. June 2021 I scheduled my surgery in October. We’ll guest what. I then caught covid again . We had to delay getting the stent again. They kept suggesting a shunt but I refused the shunt.  It’s 2023 and I still haven’t gotten the shunt. Every time we scheduled it something happened. I was and still is nauseous all the time. The medication bothers my kidneys and frequent urination. It makes me feel like I have a brain tumor. A lot of the time I don’t feel like doing anything and sometimes people don’t understand. This is a rare but horrible disease. Surgery, shunt, and stents is only a temporary fix. This is an invisible disease you can have. See my pain. I've joined many support groups and others are experiencing the same. The best thing for me to do is pray and ask God to heal and stay with me through this journey.

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 a 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.