The name of my blog is based off of one of my favorite scriptures in Isaiah.
For the past 5 and a half weeks, I have been clinging to this scripture along with the whole Word of God. Like many others, I find scripture and prayer are really helpful through trying times.
As some of you know, 5 and a half weeks ago, I began to have debilitating headaches. I was having some other scary symptoms as well, such as nausea and getting sick on my stomach, ringing in my ears, blurred vision, and double vision. It got to the point that I couldn’t even drive because of the vision changes.
After many trips to my doctor, a few trips to the chiropractor, and one trip to the ER, I was finally referred to a neurologist and got scheduled for an MRI on my brain.
Before my MRI and neurologist appointment, I went to see an optometrist for a general eye exam. They took pictures of the back of my eyes and discovered that my optic nerves were swollen in each eye. My optometrist told me that on a scale of 1-10, my left eye was swollen to about a 6 or 7 and my right eye was a 5. He then told me that my optic nerves were swollen because of pressure in my brain. He told me it could be a brain tumor, or a neurological disease that mimics all the symptoms of a brain tumor called IIH. He said that if I wasn’t treated and the pressure was reduced, that eventually, I could go blind.
So, a couple of days later, I went early in the morning for my MRI and then went to the neurologist. She told me that I didn’t have a brain tumor, but that I did in fact have a neurological disease called IIH.
IIH stands for Idiopathic Intracranial Hypertension. It’s also known by another name: Psuedotumor Cerebi. What happens is that my body makes too much spinal fluid. The spinal fluid is putting too much pressure on my brain and causing symptoms that look a lot like a brain tumor, only there is no brain tumor.
Everyone is constantly making spinal fluid, and your body is constantly absorbing it, creating a perfect balance that keeps your brain cushioned. In my case, my body is making spinal fluid faster than my body can absorb it and causing too much pressure on my brain.
So what can be done? For now I’m on a medication called Diamox that may help in reducing the production of spinal fluid. I’m also scheduled to received a lumbar puncture. This will do two things: first, it will tell the doctors just how much pressure is on my brain, and second, it will provide some temporary relief as it will drain excess spinal fluid. But as I said before, your body is constantly making spinal fluid so it will return to high pressure levels soon. There are risks of the lumbar puncture, there always will be when you’re having a big needle inserted in between two vertebrae where there are lots of nerves. I could also get a spinal headache for a week or so. But, it has to be done.
What can you do? Please, please pray for me. There’s no cure for this disease, but it is treatable. Unfortunately, I have found so far that no pain medications have helped the pain, so there may be times when I’m just not able to do things, or be at events because of the pain. I pray that my friends and loved ones can be understanding of that. I also haven’t been able to drive for weeks because of the double vision I’ve been experiencing. I’m praying that the double vision will go away and that I’ll be able to drive again. While this disease is not life-threatening, it does affect my quality of life. I know it’s something that you can’t see on the outside, but it is real, and it really does affect me.
Before all of this happened, I didn’t even know such a thing existed. IIH is a rare disease but I hope maybe this blog post will help bring a little more awareness and shed a little more light on it. Never in my life did I think I’d have a neurological disease. In fact, it doesn’t even feel real and it feels weird to be saying all of this. I hope maybe this will help my friends and loved ones understand what’s been going on with me.
I believe that if it is in God’s will, I can be healed of this. I’m praying for that, but I’m also willing to accept the fact that I may be dealing with this for the rest of my life. I trust in the Lord that He is working everything together for my good. I feel like a bruised reed, but I know He will not break me. I am His child, and I am loved.