If you follow me anywhere online, you've seen me use the hashtag #mysteryillnes for a couple of months now. While I admit that the term "mystery illness" is a bit dramatic, all I have to say is we have met, right?! So most of you know that I got sick on May 3rd. Really sick. Lisa brought me to the ER and they thought I had meningitis. I was shipped up to a bigger hospital and spent the better part of the week there. Turns out I did not have meningitis.
Good news right? Of course. But that also means that they have no idea what was wrong with me. To the point where my primary care doctor told me that they were going to call it a "viral syndrome". Whatever the heck that means.
I also had my very first migraine that first day in the hospital. I was never even prone to headaches so I guess I didn't realize I was having a migraine. Since I left the hospital I've been having what I now know are migraines regularly. I have never had excruciating pain in my head like I picture a migraine to be. But I also have a very high pain tolerance. Also I've had really scary incidents when I can't talk. I'm present and in my head telling myself to say the word but I just can't. I do eventually say it. It's just delayed. Scary stuff.
So as part of my initial mystery illness follow up, I went to see a neurologist and explained to him what was going on. He diagnosed me with sudden onset migraines with aura. The aura part is the not being able to talk. He said sometimes I would have a migraine with no aura. Sometimes an aura with no migraine but that eventually they would link up and be together. BUT he wanted to run some tests to make sure there wasn't anything more serious going on.
I had an MRI as well as an EEG. I'm one of those people that go to the absolute worst place possible in my head. I just have to. It's how I cope. I can't imagine thinking that it's just migraines and not mentally prepare for the brain tumor that I convinced myself was there. This way, I'm prepared {as prepared as one can be} for the brain tumor and then a huge sigh of relief when it's "just" migraines. I know, I'm a mess. I'm very self aware.
Today I got the results. I can officially take the mystery out of the mystery illness. I have an official diagnosis of migraines with aura. Huge sigh of relief. But not that big of a sigh because let's face it, migraines suck ass. I know all migraines are different. With mine, I get a burning sensation on top of my head and I feel funny. Kind of drunk. I have light sensitivity sometimes. And sometimes I get an instant wave of extreme fatigue. Like fall asleep sitting up in an instant while sitting up. It's talking a lot out of me and it's starting to interfere with life.
I've been tracking my incidents and since June 1st I've had at least 13 incidents. Not all were migraines but all were something to do with my head. And I know there are some that didn't get documented. So yeah. We spoke to the doctor today about it and he's starting me on some medication to prevent the migraines. I'm bummed to need to be on another medicine but excited to not have to deal with these migraines anymore. It will take a couple of months to get me to the dosage that really works because you have to increase it slowly. It might be the longest two months of my life.
For the mean time, I have to wear sunglasses at work. Yup. I mentioned that I was tracking my incidents and most of them happened on a work day. The only thing I could think of was maybe it's because of the fluorescent lighting. So he wants me to wear sunglasses for two weeks and see if it gets better. It's really the only way to identify if it's the lighting. This wouldn't be a problem if I worked in an office. Oh well. It is what it is.
I am glad that you finally have some idea of what this is - but I am sorry that you are going through it! Cooper has migraines - his ped. said that they usually pop up when he is tired and dehydrated. I hope the meds help!!
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