Happy Anniversary IIH

It started with a spot. I tried to wipe it away, but for some reason my eyes would not give me that spot back. I held my head to the side so I could see in some sort of focus, but it was difficult. I had a headache, but this wasn’t a normal headache. This headache took my whole head and squeezed it so hard, like it was a water balloon filling with water ready to explode. The only problem was, that balloon was in my skull so it couldn’t pop. 

I cried for hours because of the pressure and worry over the loss of vision. I was only 36. 

Being a little of a worrier at the time and considering I couldn’t see to google anything, I started running through scenarios in my mind of what this mysterious crisis might be. 

1. Aneurysm – Probably gonna die. 

2. Meningitis – Depending on what kind I might make it, and considering I think I’ve had my vaccinations for the really scary one I might be ok. 

3. Glaucoma – I guessed if I already was loosing my vision smoking pot wasn’t going to help me at that point. 

I convinced myself that my vision was probably nothing to worry about and my headache was just a migraine that would go away with rest and medication. 

So I waited. We had made an appointment with our family doctor for me because I had a bladder infection that needed to be treated and it was sheer coincidence that I lost my sight that morning as well. As the minutes ticked by 2:30 couldn’t come quick enough. 

When we arrived at the office I was met by the friendly administrative assistant, then the nurse greeted me and showed me to a room and promptly asked me to pee into a cup to confirm the reason for my visit. 

I remember fumbling with the cup. I had such a hard time printing my name on the label. Something I had done probably hundreds of times I was now having to squint and angle it just to make sure I hadn’t missed a letter in the name I had written millions of times before. 

I returned to the exam room and was greeted by my doctor, who promptly told me that I did in fact have a bladder infection, it turned out I didn’t even need to write my name on the damned cup. 

As we were getting ready to leave I lost my balance and let the doctor know that I had lost quite a bit of vision in my left eye and some in my right. She did a quick exam where you read off of the chart, which I failed, and she pulled out her light, this was what would be the first of countless lights to be shone in my eyes. 

Her face dropped. 

Up until that point I was pretty calm about what was happening with my eyes. I was making plans to get new glasses in my head, I even made a joke about what I wanted to name my guide dog, if it came down to that. (Oh, it was Paula for a girl, of you were wondering.) But seeing my doctors face when she pulled away from my eyes instantly turned my calm, hurts a bit when I pee appointment, into terror. She tried to mask her alarm and worry but we both knew something serious was wrong. She told me I would have to be seen by an Ophthalmologist and a Neurologist immediately. 

As it turned out, my optic nerves were swollen and hemorrhaging, which was what was causing the sudden blindness. All of that was due to my body producing too much Cerebral Spinal Fluid (CSF), and it was compressing my brain and pushing on my optic nerves. Hence the headache. 

The doctors determined I have Idiopathic Intracranial Hypertension, a rare and incurable brain disease. 

Idiopathic Intracranial Hypertension, or IIH, affects about 1 in 100,000 people. Anyone of any gender, weight or age can get this horrible disease, and I am one of the 100,000. 

With today being the anniversary of that fateful day, learning about my illness, I find myself reflecting on the past three years since my diagnosis. 

I’ve had eight IIH related surgeries. Two Ventriculoperitoneal shunt (VP shunt) placements, six VP shunt revisions. One Lumbar-Peritoneal shunt placement and one LP shunt revision. I’ve had over 25 Lumbar Punctures. Countless cat scans, MRI’s and eye exams. Add to that the medication. Which sometimes makes me sicker than the disease itself. 

This has all been compressed into a short three years. Sometimes it feels like a lifetime ago, and other times it feels like yesterday that I peed in cup and tried to rub the black spots out of my eyes. 

I’m interested to see what the next three years are going to look like for me. I’m hopeful that my IIH will become more stable, but I know that’s never promised with this disease, especially after being shunted. I try to stay positive and look forward to my good days, even though sometimes I don’t know when they will be, and I take advantage of them when they do happen.  

#IHope 4 a cure. Soon. There is very little research being done on this disease and it’s sometimes hard for us patients to be taken seriously because we present with ‘just a headache’. I’ve had long waits because of triage nurses mislabeling my symptoms as ‘a migraine’, when in fact I needed emergency surgery. All because she wasn’t educated about IIH. 

I’ve also had some of the most compassionate doctors and nurses care for me and want to see me get my life back. It’s quite the experience to have a doctor WANT to cure you. 

So here I am. Wishing my disease a Happy Anniversary. It’s a bit morbid. 

IIH, you’ve taught me enough. Like anything that should come in and out of ones life, it’s time for you to go. I don’t want to wish you a Happy 4th Anniversary next year. 


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