Spinning into Control

This is by far one of the most exciting blog posts I’ve ever written and it’s because this story started 3 years ago without an end in sight. It is by no means over, but I got the best worst news I’ve received this whole time. I decided to write a post about it because there have been SO many people who helped me get to this point (especially in the beginning) and I’d love for them to know where I stand today.

Three years ago, I began getting a sharp, hot pain in the lower right occipital lobe; I could only ever describe it as lightning. It would come and go without warning—and with a vengeance—rendering me useless for the 10-15 seconds it would last. Nothing I did could anticipate or prevent it, often leaving me feeling afraid, saying, “this isn’t normal.”

Fast forward a few months to me crashing down in a bathroom during one of the most painful headaches I could remember and watching things spin out of control more severely than they ever had—all of that was meant literally, by the way. That day, after weeks of seeing the school doctor, a family doctor, an eye doctor, and a neurologist, I was on my way to the ER. 7 hours later, my long awaited CT scan came back clear. A relief? Yes. Enough relief? No.

Remember just before when I hit fast forward? Well, there was more to it than that. There was pain, sickness, lots of tears, tons of fear, scary words being thrown around, and an urgency that wasn’t being met. The stress of trying to figure it all out was doing more damage than good, so when that scan came back clear, I stopped trying.

I learned how to manage the pain, figuring out what made it worse and trying to do less, figuring out what made it better and trying to do more. But about 10 months ago, a new chapter really kicked in: welcome to the world of vertigo. It started out minimal, getting dizzy here and there, nausea coming and going, but over time, it got harder to control, harder to anticipate, and affected me every day. It was so sporadic that going to the doctor simply wasn’t a priority. When I finally paid attention, I noticed how much things had changed. I was constantly off balance, couldn’t move quickly, had trouble driving, and motion sickness was part of the daily routine. Then this past Sunday, in a situation I had yet to experience up to this point, I was glued to my bed all day because nothing would stop the spinning. A gentle turn of my head, a quick flicker of my eyes, and even laying down would have me spiraling off. It got a bit better, but not by much, and hasn’t improved since.

Today, I picked up where I left off in 2014. I hit the next stop on my list of specialists: the ENT (Ear, Nose, and Throat). Kudos to my mom, who knew all along I’d find some real answers here. I want to preface by saying the quest isn’t over; I have a series of tests and an MRI scheduled for three weeks from now at Christiana Hospital, but for the first time, I got a potential diagnosis I can get behind—a diagnosis that makes sense and doesn’t just continue to chip away at possibilities and maybes.

Dun-dun da-dun! Vestibular migraines.

“No, no, no. I’ve had migraines. This is not migraines.”

^ That right there has been my feeling since day one. I’ve had migraines before. All this? Nothing like the migraines I’ve had. So I had to understand what it really meant. Turns out, there are many types of migraines. The traditional migraine is what I grew up getting: aura (for me, it was visual wobbling/undulation or dark spots that would eventually fill in my vision until I couldn’t see), followed by 2-3 hours of the most excruciating headache I could imagine, only getting relief after a nap I would struggle to fall into. Vestibular migraines? Apparently much different.

They are sporadic. Some can last 3 minutes, while others can last 3 days. The headache can be horrible or nonexistent. The differentiator is vertigo, which can happen with or without a headache (and is common in people with a history of traditional migraines—who knew?!). Other symptoms include:

  • Nausea: ✓
  • Motion sensitivity: ✓
  • Balance Issues: ✓
  • Visual and auditory sensitivities: ✓

I have more tests to take and other issues to rule out, but for the first time in three years, a doctor has finally said something that makes sense—finally listening to everything I had to say and looking beyond the tip of the iceberg. Does sitting behind a computer make it worse? Yes. Does getting stressed out make it worse? Yes. Are those things the cause? No.

*Lets out huge sigh*

Finally. Finally someone heard me. It’s a neurological condition made worse by various triggers. Bad news is it’s one without a cure. Good news is there are going to be things I can try to make my life better and to alleviate the problems. Am I happy to hear it can’t be fixed with one visit to an ENT? Not really. But it’s easier to live with a condition when you know what it is. Today, I got my first real taste of peace of mind.

I’ve got some researching to do, more issues to rule out, and, not to mention, a long road ahead of finding the right path for me, but this has changed my life and to have a better understanding of what and why has me over the moon today.

A shout out to the family and friends who got me this far. I kept the problems as much on the DL as I could, but confided in a number of people that looked out for me along the way, whether it was making sure I took care of myself, giving me a shoulder to lean on, both physically and metaphorically, sitting with me for hours in a busy emergency room, being the one to finally get my ass to the hospital, and especially to my parents and Nick, for not allowing me to let it go on any further without action. To all you amazing humans, I thank you so much and love you all very dearly!


7 thoughts on “Spinning into Control

  1. Aunt Doris says:

    I am so happy you are getting answers! Also look at “ocular migraine”… I just found out that is one of my issues. Just knowing is a relief! I am glad this may help you to find relief!


    • katinrome says:

      I’ve heard of ocular migraines—they do not sound like fun!! I looked up the symptoms and it doesn’t align with mine, but yes. It is a huge relief to simply know. Granted, we have more things to rule out, but this is the closest anyone has ever come to giving me an answer I feel I can get behind—it covers everything I deal with, down to how sporadic the symptoms are. ❤


    • katinrome says:

      I have not! Once my other tests are completed, we will be looking into many forms of treatment/relief, so I will keep this in the back of my mind and look into it!


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