My Story

The Diagnosis

June 14th was the day that the headaches started. Thank you social media for reminding me because apparently this was an important date. Roughly 10 days later I go in to see my doctor. "I have a headache or a migraine and no I've never had them before and yes it's been over a week and yes the light hurts my eyes and everything sounds loud. Oh- And I can't see. Like really, everything is blurry, I can barely read and it's like I'm going blind." A few tests and an MRI later she came back to me saying I'm not really sure what's going on but it may be a sinus infection & a tension headache so we'll put you antibiotics aka horse pills. I mean really? They have all this technology yet they can't make pills any smaller?

I don't remember exactly but I visited her twice more and the ER twice more. The first ER visit was awful. "Well, unfortunately headaches are one of those mysterious things that don't respond to pain medication." So he gave me this "migraine cocktail" which included a painful shot and he said that sometimes the cocktail helps and sometimes it makes it worse. Well he was right about both. I could sleep that night, but the pain the next day was worse, which I didn't think was possible.

Day 22. I still had a headache that was putting me on my back in a dark room quietly listening to HGTV trying to get through the day. And my vision was getting worse. By the afternoon I was in tears and couldn't handle it anymore so trip #2 to the ER began. New doctor, same info, except this time he looked in my eyes. For some reason he thought that a spinal tap would be a good route since it was day 22 and we still had no answers. And yes, I did just say spinal tap- let me tell you, they are not fun. The ER doctor tried the first time and after several pokes said "Well, it [cranial fluid pocket] should be there.... We'll send you up to radiology to get it done." So up we go to radiology where it took them multiple tries even with the xray of my back telling them exactly where to poke. I kept hearing, "I just don't understand why this isn't working.... let's try a different needle size." My back was sore for several days.

Results from the spinal tap- no meningitis, off the charts pressure, but other than everything looked normal. Thank God that the neurologist that was on call that evening looked at my chart and said that I should go see a neuro- opthamologist. Between the extremely high pressure, my symptoms, and sometimes about my eyes he directed us towards Dr. Falardeau. She was booked 2 months out. She had a cancelation the following Wednesday (this day is Friday). The spinal tap lessened the headaches and I couldn't wait to see what she had to say- I wanted to know why I was half blind.

Wednesday came & I did their eye tests, most of which I failed. Test after test they brought me I was failing and it felt miserable. It was like going in for a final at the end of the semester to a  class I'd never been to, not able to answer yes to a single thing. They have a light test where you close one eye and focus on four green dots in the center of this machine. Every time you see a light, whether dim or bright, fast or slow, push the button. I pushed the button maybe 15 times- the test is almost 7 minutes long with lights going off every few seconds. Nothing like taking that stupid light test to really confirm that your vision is going.

She came in & after looking at the results explain that I have IIH or idiopathic intracranial hypertension. In other words, there was too much cranial fluid pressing on my optic nerves & if we didn't do something fast, I would be facing serious permanent vision loss. Well- that was news to me. I though I had a bad headache which caused some funny things to happen with my vision and it would eventually work itself out. No.

I have IIH which is a lifelong condition and can come back at any point.

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The Treatment

Day 27, headaches are gone but now I can't see much and I was just quickly diagnosed with IIH. She [Dr. Falardeau] had no doubt in her mind that's what I had. She said we should take an aggressive approach to treatment in order to drain the cranial fluid and get the pressure off my optic nerves. I was thinking- GREAT. I would love to be able to see everything clearly & be able to WORK. I miss photography- more than I thought I would. She started talking about medications that would make my toes, fingers, and lips tingle & she would start me on a dosage that was double the average. (The tingling- not fun.) Then she mentioned the word surgery.

It took every ounce of my being to sit there, nod my head, and not crumble at the seams.  It is day 27, I am tired. I am weary. I can't see much & I can't do photography. And you she just blurted those words out like they were an everyday thing. (Side note- she's amazing, and was not insensitive, just being realistic.) She said with cases as severe as mine, surgery is the best way to relieve that pressure quickly before it does anymore permanent damage. Well who was I to say no to the lady who was trying to save my eyes. So two days later, friday morning, I went in for surgery on my left eye & the following thursday they did surgery on my right.

Today is day 44 & my eye sight has improved but there is still a long ways to go. God has blessed me and my family throughout all of this. I wasn't nervous for the surgeries, I just wanted to get through them and start healing. God truly carries you through the tough times in your life and I have never seen him so present & at work in my life than now.

I get up everyday hoping that the ceiling will look clear. Hoping that I can when I sit up I'm not nauseous. Hoping that my peripheral vision returns (it's still largely gone at this point.)  I wake up thanking God that I'm not totally blind, that I can still see my family, that I can still see blue skies and sunsets, and that things are slowly  getting better. Don't get me wrong- I have my bad days. I have days where I don't want to get up. I just want to cry. Because I'm tired of being not being able to cook for myself or see where I'm going. I'm tired of relying on other people to get through my day. I'm tired of not being able to photograph people and work.

I am weary after 44 days of pain and frustration and bruises from bumping into things. But I'm alive. I am healing. I have family. I have my fiance. I have support. I have great medical insurance that will make this expensive instead of outrageously expensive.  I have God. And at the moment, I have nails that are perfectly done because my amazing mom treated me to a manicure.
I have learned a lot through this & I am no where done learning & unfortunately, I am no where done dealing with this.