Hey all,
So, two years ago yesterday I wrote a blog post talking about my life with iih, or Idiopathic Intracranial Hypertension. If you want to read that post first, here it is. I wanted to link it because I’m going to contradict some things I said back then, mostly because I wasn’t exactly truthful to anyone, least of all myself. I’m also going to go into detail on some things, so here’s your chance to back out. This is a
Before I start, let me explain what iih is. Also called Pseudotumor Cerebri, WebMD describes it as “a brain condition that causes the same symptoms as a brain tumor: headaches, vision problems, nausea, and dizziness. But it’s not a tumor.” (source) It goes on to say, “It’s causes by increased pressure around the brain.”
Basically, iih is when pressure grows around the brain due to an increased amount of cerebrospinal fluid. To note, this fluid is already surrounding the body’s brain and spinal cord to protect them from injury. Iih occurs when this fluid doesn’t reabsorb into blood vessels, or there is an influx that is not draining properly.
I was diagnosed after having my eyes photographed when getting them checked for a new prescription on Wednesday November 1, 2017. It was a routine checkup, but I had gone in with concerns in the back of my mind (ones that I was planning on addressing whenever I could get to my primary care doctor, if he ever had space for me in his schedule. The curse of living in a town that was frequented by Northerners during the winter months). I had been getting headaches if I looked at a computer too long, I’d had some dizziness at work several times that I’d attributed to the Florida heat, and a few other things that amounted into symptoms (some brief double vision, two very quick blackouts of vision, and ringing in my ears).
The optometrist I went to was new to the practice and very thorough. She went through every test carefully, not rushing in the slightest. At one point, she had noticed that my optic nerve looked swollen, though she though it could just be eye strain, due to the fact that my current glasses had scratches right in the middle of the glass and my eyes were trying to focus around to compensate. Her final test was taking a picture behind my eyes. It was here that the appointment took a turn.
When she took the picture and started to study it, I had sat uneasy. Her easygoing demeanor had shifted to serious. She pulled out my pictures and ones that were from someone else. Mine showed that my optic nerve was swollen, though not due to eye strain. It looked like there was something pushing against it. The other picture did not show this at all.
It was here that she gave me the two options. Go immediately to a specialist that she consulted with, or go to the emergency room two minutes from the store and get an MRI on my brain.
I chose the former option.
And there’s a part of me that kinda regrets that I picked so quickly.
Now, I want to be clear, I’m not mad at this optometrist for scaring me. In fact, she was in the wrong for giving me options. I would come to find out later that she was supposed to (apparently by law) call for an ambulance immediately and have me sent to the ER, as my vision could be compromised. Instead she gave me a choice and let me drive to the specialist, a five minute drive in the other direction.
But I digress.
Anyway, I had to make two calls. The first was to my boss, because I was supposed to go into work not two hours later, and there was no way I would be able to. She wasn’t happy, in the least. I promised to drive down as soon as I had a medical note in hand. She covered my shift, but she was not happy about it. (She got over it the next day when I presented her with my diagnosis and proof of seeing a medical professional. I guess two other people called out with similar reasons, and I was the only one to back it up. She bought me dinner the next night I worked to apologize for being mad.)
The other call, which I made as soon as I left the optometrist, was to my Mom.
Mom was at home, working away, expecting my “all clear” call. It’s something we started doing when I started to go to medical appointments without her, though I always appreciated her support.
And I broke her heart.
Over thirteen years prior, Mom received the “Houston we have a problem” call from my dad, after he went to the ER following work one day, feeling sick enough to drop. He didn’t warn my mom, he just went. He’d called from the ER, while they were prepping to take him for some scans. He was diagnosed with cancer, which would eventually kill him sixteen months later.
And now here I was, giving her the same call.
Mom met me (not beat me to, as I said in the original post) at the specialist’s office and joined me for every step and every test, even though no one would give me a straight answer. It took almost an hour to find out.
When the specialist spelled it out, I almost laughed. I was one of those people that was could be described as disgustingly healthy. I’d never broken a bone, never gotten more sick than a cold during the change of the seasons. Only had strep throat once. Only had lice once, after a breakout in my preschool. No allergies that we were sure of. The only thing “medically wrong” with me was that I needed glasses.
That day, he gave me statistics. Said that he would be blunt, that my weight was the main factor (pro tip, it wasn’t, but thanks). Said that there was no cure (wrong again). Said that this would effect every part of my life (… ok, that one’s true).
I was referred to another practice that was within my healthcare network, and was treated by a doctor that apparently specialized in iih. He had me on diamox (a medicine usually used to treat the ends, though had had some success here) for over a year. I had a spinal tap and a failed operation to insert a shunt, both of which resulted in a week of bedrest.
Since my move to California, two of the symptoms that I was initially treated for have come back. I still get blinding headaches that are borderline migraines which leave me unable to do much of anything. I’ve gained back some of the weight I’d lost because of being on diamox. But according to the doctor I just went to after my last headache (yesterday, hence the late post), I don’t have iih anymore. I just have migraines. He’s not sure what triggers them, yet, but my eyes are fine.
Actually, he said that I probably never had anything to worry about.
Last night, as the headache behind my eyes finally stopped aching, I thought about it. What would have been different if I’d gone to the ER? Would I have been treated immediately there, instead of the runaround that I got? Would I have had answers quicker? Would the doctor that did the shunt operation had done things differently so that it would have actually worked?
Of course, there’s no way to know. I can’t go back and rewrite history. I can only live in the here and now.
So, to recap, I still get massive headaches, but that’s just my head. No fluid buildup, no false tumor. Did I ever have it? Possibly. But right now, I’m healing.
Let’s see what the future holds for me.
Until next time!
