My IIH Journey: My Story & Diagnosis

Beautiful lady,

Thank you so much for taking the time to read this and for the opportunity to have a candid moment with me. I appreciate you being here. As 2021 approaches, I wanted to start the year by not only being more candid but also by making myself more open and vulnerable. I feel that being open and vulnerable is where we can find the strength not only for ourselves but also for others to find their own strength and confidence and to share their stories. I feel that God has a purpose in all things and we can give Him glory by sharing that journey as we go through it and of course overcome it.

In November 2020, I was diagnosed with idiopathic intracranial hypertension (IIH) and as a result, papilledema (PupIIH, formerly known as pseudotumor cerebri, is a rare neurological disorder (Occurs in 1 in 100,000 peopleCerebrospinal fluid overload (CSF overload) is a condition where too much cerebrospinal fluid is produced for an unknown reason, causing excessive pressure inside the skull. Common symptoms include headaches, a whooshing sound in the head, nausea, dizziness, and vision changes or loss of vision. To find out more about IIH and its symptoms, click here. here.

IIH is most common in obese women of childbearing age. Increased intracranial pressure often leads to swelling of the optic disc, a condition called papilledema. Symptoms of papilledema include visual disturbances, headaches, and nausea. For more information about papilledema, here.

First, I want to give you some factual information about these symptoms. It may seem scary, but the most important thing for anyone to do is to be aware and knowledgeable about what is going on with their body. Additionally, everyone has different degrees of IIH and papilledema. If you are interested in these symptoms or have recently been diagnosed, I want to share my story, how I got diagnosed, and where I am at now.

First let me make a public service announcement…

everytime Take advantage of your dental, medical and vision insurance. Even if you have insurance, many people don’t take the time to learn about their health. A lot of it is preventable. (…not necessarily IIH, but you get what I mean) Why not take the first step and learn more about your body and your health?

How did this happen?

Much of this journey began with deciding to take control of my health at age 34. As Black people, I know that many of us avoid going to the doctor because of the history of Black people’s relationship with doctors and medical professionals, but it’s so important that we get educated, and a lot of that comes from regular visits to the doctor (annual checkups).

The same goes for eye exams. Many people think they don’t need one unless they have vision problems, but it’s so important for everyone to have one, because an optometrist can actually see the back of your eye.This was first discoveredMy eye problems started about 10 years ago. I didn’t have vision insurance, so I didn’t get regular eye exams. However, when I graduated from college and got my first job, I had health insurance, so I scheduled an eye exam at my local eye center. I remember the eye doctor saying that my optic nerve looked a little blurry, but he didn’t seem particularly concerned at the time, so I didn’t think much of it.

Because I worked in a contract job with no health insurance, it took me a few more years to get my next eye exam. At my next eye exam in 2014, they found that my optic nerve was swollen and told me it was important to see an eye doctor to find out the cause. I remember going there and getting a visual field test, and then being recommended to get an MRI. I didn’t understand anything they were saying, as I don’t recall them ever explaining in detail what the possible causes could be. I think I felt a mixture of fear and confusion at the time. Plus, I didn’t understand because there was nothing physically wrong with me. So I decided not to get any further tests at that point.

This year, for the first time, I had my eye exam at a new place. There, the optometrist took the time to explain to me the importance of knowing what is going on with my eyes. He showed me my blurred optic nerve and encouraged me to find out the cause and see for myself. Since I had already started to take care of my health from the beginning of the year, I decided to follow his advice and he referred me to a local ophthalmologist.

An important thing to note here is that I never had any obvious signs of IIH, or so I thought. During eye exams over the past decade, I would often be asked if I had headaches, blurred vision, or nausea, which I never did. I didn’t realize I had symptoms for a while until I started this process, but I didn’t realize they were related because they were never debilitating and no one asked me. The main symptoms I experienced were occasional neck stiffness, lower back pain, and tinnitus. I didn’t think much of these things because they weren’t something that happened every day.

Next steps

After seeing the optometrist, I was first seen by an ophthalmologist. At this facility, I had another visual field test, had my intraocular pressure measured, had pictures taken of the back of my eyes, and had my eyes examined. After undergoing these tests, the ophthalmologist stated that I had papilledema in both of my eyes and likely had IIH. He then referred me to a neurologist for tests to confirm this diagnosis.

My appointment with the neurologist was short and felt more like a physical exam. I was weighed, my eyes were checked, and my blood was drawn since I hadn’t had one since the beginning of the year. I was then referred to a facility for an MRI and a spinal tap to confirm IIH. The blood test also showed that I needed to take Vitamin D, which I started taking immediately.

MRI

The MRI was super nerve-wracking, but the procedure was easy. It was a no-contrast MRI, so no needles. I was asked to wear no metal to the appointment, and was allowed to wear my own clothes in the scanner. The scan took about 30 minutes. The only discomfort for me was having to lie still in the scanner for so long. As a plus-size woman, it’s hard to stay still in a small space… well, you get the idea.

The purpose of the MRI was to see if there was a tumor and what was causing the IIH. Within a few days, I received a call from the neurology nurse who told me there was no sign of a tumor, but they could see that my optic nerve sheath was swollen. Still, I was told to get a spinal tap the following week.

Lumbar puncture

You may be wondering what a lumbar puncture is. It is a procedure in which a needle is inserted into the spinal canal to withdraw spinal fluid. There are several purposes for a lumbar puncture, but mine was to check the pressure level in the skull, test a sample of the spinal fluid to check for any diseases, and if the pressure is high, withdraw spinal fluid to bring the pressure back to normal. The procedure was okay for me, but it was a different experience than usual. I was told not to eat anything for 4 hours before the appointment, so I decided to have the lumbar puncture first thing in the morning.

I had a guided lumbar puncture, so the doctor used x-rays to guide me to the area from my spinal canal where they would collect the spinal fluid. The doctor first anesthetized my lower back area. Soon after, the procedure began. I started in a prone position until they inserted the necessary needle into my spinal canal. Once the needle was in, I was turned onto my side to drain the spinal fluid. The doctor and nurses talked to me throughout and were very reassuring. The only pain I felt during the procedure was when they first gave me the anesthesia and when the needle was touching my nerves while they were draining the spinal fluid, which was a weird tingly feeling.

X-ray of my spinal canal

Recovery After a Spinal Tap

process

A few weeks after the lumbar puncture, I was asked to see a neurologist for follow-up. She reviewed my MRI and lumbar puncture results. Her treatment plan was to lose weight first. My thoughts on this will be detailed at the end of this blog post. Since I don’t have many of the debilitating symptoms of IIH, she suggested that I either get occasional lumbar punctures to drain the fluid or start taking medication to help reduce spinal fluid and lose weight. I chose the medication.

The first medicine I was prescribed was Topiramate. I tried it twice but it didn’t suit my body at all. I am now taking Diamox 500mg (250mg twice a day). Diamox has been a great help to me. The only side effects I have experienced from Diamox are that I catch colds more easily, I sometimes get a tingling feeling in my legs, and I get tired more easily. It’s been a month since I started taking the medicine and most of those side effects are still there but they are minor.

I saw my eye doctor in December to check on my eyes, but at that point I had only been taking Diamox for one day. I had been eating mostly healthy and limiting my salt intake, so the eye doctor saw some improvement in my optic nerve. However, he told me to come back in January to give the medicine time to kick in and make sure it was really working properly.

My thoughts

Well, if you’ve made it this far, thank you so much for taking the time to read this. I decided not to go public with my diagnosis for a while because I was not only processing everything but also taking the time to learn more about IIH and papilledema. One thing I purposely didn’t mention at the beginning of this post is that many people feel that IIH is weight related. However, there is no scientific evidence for this. Some people have lost weight and their symptoms have gone away, while others have lost weight and all of their symptoms remain.

I am not a medical expert, so I am just sharing what I have learned so far about my body. Now that I have started living a healthier lifestyle, I feel that IIH is not necessarily weight related, but rather what we eat. We live in a world where there are a lot of processed foods that contain chemicals that we probably don’t know about. Eating cleaner and going easy on salt has made a huge difference for me. I have also found that I feel best on the days I don’t eat meat. Maybe you’re not ready to jump into a vegetarian or vegan lifestyle just yet, but you’re tiptoeing around that line. Let’s take a look…

Since I started living a healthier life in October, I have lost 20 pounds so far. I feel much better and have started listening to my body. IIH has taught me a lot about myself and that health is true wealth. I don’t know what the future holds, but I believe that if God supports me and I do my best to live a healthier life, we can be successful.

Have you heard of IIH or papilledema? Do you have any questions?

May God bless you.