December 30, 2020

My IIH Journey: My Story & Diagnosis


Thank you so much for taking the time to read this and allowing me to have a moment of transparency with you.  I appreciate you being here and as we move closer to 2021, I wanted to start the year off with not only being more transparent, but allowing myself to be more open and vulnerable.  I feel like openness and vulnerability is where we can find strength not only for ourselves, but it allows others to find their own strength and confidence to share their own stories.  I feel that God has a purpose in all things and we can give God glory by sharing the journey as we go through it and of course, as we overcome.

In November of 2020, I was diagnosed with Idiopathic Intracranial Hypertension (IIH) and as a result, I was also diagnosed with papilledema (Paps).  IIH, previously known as pseudotumor cerebri, is a rare neurological condition (occurs in 1 in 100,000) that causes the overproduction of spinal fluid for an unknown reason, which leads to too much pressure inside the skull. Common symptoms are headache, a whooshing sound in your head, nausea, dizziness, changes in eyesight, vision loss, etc.  To see more symptoms and learn more about IIH, click here

IIH is most commonly found in obese women of child-bearing age.  Due to the increased intracranial pressure, swelling of the optic disk occurs for many, which is called papilledema.  Symptoms of papilledema can include visual disturbances, headaches and nausea.  To read more about papilledema, click here.

I wanted to start off by sharing the factual information about these conditions.  Although it may seem scary, the most important thing for anyone is to be aware and knowledgeable about what is going on with their body.  Plus, everyone has varying levels of IIH and papilledema.  If you are someone curious about these conditions or you've been newly diagnosed, I want to take time to share my journey with you, how I was diagnosed and where I am right now in my journey.

Let me first begin by making a Public Service Announcement...

Always utilize your dental, healthcare and vision benefits.  A lot of people have insurance, but don't invest the time to go and learn about their health.  SO many things can be preventable (...not necessarily IIH, but you know what I mean) if you will first take the step in going and educating yourself on your body/health.

How did this come about?

A lot of this journey began because at 34, I finally decided to take control of my health.  I know as Black people, a lot of us can really avoid going to doctors due to the history Black people have had with doctors and healthcare workers.  It is so important for us to be educated, though, and a lot of that comes from going to the doctor regularly (yearly physical).

The same can be said with eye exams.  A lot of people think that eye exams aren't necessary unless you're having vision issues, but it is so important for everyone to go because optometrists can actually see what is going on behind your eyes as well.  I believe my journey with papilledema (this was found first) began about 10 years ago.  I did not have eye exams regularly at one point due to lack of vision insurance; however, when I got my first job out of college, I had health benefits and scheduled an appointment for an eye exam at a local eye center.  I remember the optometrist saying my optic nerve looked a bit blurry; however, she did not seem to express any concern at the time so I didn't think much of it.

Due to working a contractual job without health benefits, it was a few more years before my next eye exam.  At my next eye appointment in 2014, it was brought to my attention that my optic nerves were swollen and it was important that I go to an ophthalmologist for testing to see what the cause could be.  I remember going and having a visual field test and their next recommendation was an MRI.  I don't remember them really sharing with me what the possibilities of causes could be so I just simply couldn't wrap my mind around what they were saying.  I feel at the time, it was a mix of fear and just not knowing.  Plus, physically, I felt fine so I couldn't understand.  So, I opted to not have any further tests done at that time.

It was not until this year, that I had an eye exam at a new location and the optometrist really sat down with me to tell me the importance of finding out what may be going on with my eyes.  He showed me the blurriness of my optic nerves and encouraged me to find out the cause just so I can know.  Since the beginning of the year, I'd already started to take charge of my health so I decided to take his advice and he referred me to a local ophthalmologist. 

The important thing to note here is that I didn't have any of the telltale signs of IIH or so I thought.  In the midst of these eye exams throughout the last 10 years, I was often asked if I had headaches, vision trouble or nausea, which I did not have.  It wasn't until I began this process that I realized I had had symptoms for awhile, but since they weren't debilitating and no one asked me about them, I had no clue they were related.  The main symptoms I experienced were occasional neck stiffness, lower back pain and whooshing in my ears.  These things weren't daily occurrences so I didn't think much of them.

Next Steps

The first step after seeing the optometrist was to see an ophthalmologist.  At this facility, I went through another visual field test, measuring the pressure of my eyes, taking images of the back of my eye and having my eyes examined.  After having these done, the ophthalmologist said it appeared that I had papilledema in both eyes and I had IIH.  He then referred me to a neurologist who would do testing to confirm this diagnosis.

My visit with the neurologist was brief and reminded me much of a physical exam.  They took my weight, tested my eyes and took blood since I hadn't had blood work done since the beginning of the year.  She then referred me to a facility that would conduct an MRI and lumbar puncture to confirm IIH.  I also found out from my blood work that I needed to begin taking Vitamin D, which I began immediately. 


I was beyond nervous for my MRI, but it was a simple process.  I had an MRI without contrast so there was no needle involved.  I made sure I wore no metal to the appointment and I was able to wear my own clothing in the scanner.  The process took about 30 minutes.  The only uncomfortable part for me was laying still in the scanner for that long.  It was hard to not move because as a plus size woman in a small space... Well, you know. 

The purpose of the MRI was to see if there were any tumors and what could be cause of the IIH.  I got a call within a couple of days from the neurologist's nurse letting me know there were no signs of tumors; however, they did see that the sheaths of my optic nerves were swollen.  They wanted me to still have my lumbar puncture the following week.

Lumbar Puncture

If you're wondering what a lumbar puncture is, it is when a needle is placed into your spinal canal to remove spinal fluid.  There are multiple purposes for lumbar punctures and for mine, it was to see the level of pressure within my skull, to test a sample of the fluid for any diseases and if the pressure was high, to drain the fluid to bring my pressure to a normal level.  The procedure wasn't bad for me, but it was a different experience.  Since I was advised that I could not eat four hours prior to my appointment, I chose to have my lumbar puncture first thing in the morning.

I had a guided lumbar puncture so the doctor used an x-ray to guide him to where he would obtain fluid from my spinal canal.  He first numbed the area, which is in my lower back.  Shortly after, he began the procedure.  I started off on my stomach until he got the needle to wear it needed to be in my spinal canal.  Once the needle was placed, I was repositioned to my side for the spinal fluid to drain.  The doctor and nurse talked to me the entire time and made me feel really comfortable.  The only pain I felt during the procedure was when he initially numbed the area and I felt strange tinges when my nerves would hit the needle as he was draining fluid.

X-Ray of My Spinal Canal

The actual procedure probably took 30 minutes.  Afterwards, I was wheeled to a recovery area where I had to lay completely flat for almost 45 minutes.  I felt really good after the procedure and my mental clarity was perfect.  The hardest part of the lumbar puncture was the recovery at home.  I had to lay completely flat for 24 hours minus quick meals and bathroom visits.  I wasn't sure what to expect after the 24 hours, but it took nearly a week for me to recover.  I had no headaches or anything, but the lower back pain was tough over the next week.  I know if I ever have to have a lumbar puncture again, I will automatically take a week off.

The results of my lumbar puncture came quickly.  No signs of disease, which then confirmed that I had IIH.  My opening pressure was 40.  For reference, your opening pressure should be 25 or below.

In Recovery After Lumbar Puncture


A few weeks after my lumbar puncture, I was asked to come back to the neurologist for a follow up.  She went over the results of my MRI and lumbar puncture.  Her course of action was for me to primarily lose weight.  I'll share more of my thoughts on this at the end of the blog post.  Because I don't have many of the debilitating symptoms of IIH, she suggested I could either have occasional lumbar punctures to drain fluid or begin a medication that would aid in reducing spinal fluid and help me lose weight.  I chose the medication.  

The first medication I was prescribed was Topiramate.  It did not agree with my body at all after trying it twice.  I am now on 500 mg (250 mg, twice a day) of Diamox.  Diamox has helped me tremendously.  The only side effects I've experienced with Diamox is that I tend to get cold easily, have occasional pins and needles feeling in my feet and can become fatigued easily.  I have been on the medication for a month now and most of those side effects are still there, but minor. 

I had a follow up appointment in December with my ophthalmologist to see how my eyes were doing and at that time, I had only been on Diamox for a day.  I had primarily been eating healthier and limiting salt intake and he saw some improvements in my optic nerves; however, he scheduled another follow up appointment in January to give the medicine time to work and to see if it's truly working properly.

My Thoughts

Well, if you have gotten this far, I truly appreciate you taking the time to read this!  I chose to not share my diagnosis for awhile because I was processing everything as well as taking time to really learn more about IIH and papilledema.  One thing I purposely didn't mention at the beginning of this post is that many feel that IIH is weight related; however, there is no scientific proof of this.  There have been a number of people who have lost weight and gone into remission, while others have lost weight and still have all of the symptoms.

I am in no way a medical expert so I'm just sharing what I've learned about my body so far.  As I've started a healthier lifestyle, I don't feel that IIH is necessarily weight related, but more so related to what we eat.  We live in a world of so much processed food with chemicals we likely don't even know about.  I found that eating cleaner and consuming less salt has made a world of difference for me.  I have also found that I feel my best when I have meatless days.  I'm not quite sure I'm ready to jump into vegetarian or vegan life just yet, but I'm tiptoeing on the border.  We shall see... 

Since I started a healthier lifestyle in October, I have lost 20 pounds so far.  I feel a lot better and I'm learning to listen to my body.  IIH has taught me so much about myself and that health is truly wealth!  I have no idea what the future holds, but I know that with God on my side and me doing my best to live healthier, I believe we got this!

Have you ever heard of IIH or Papilledema?  What questions do you have for me?

God bless & stay fab,


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