I had some concerning dizzy spells pop up in December. These persisted for weeks and weeks. The dizziness was so persistent and intense that I stopped driving for a couple of months just to be on the safe side. I went to various doctors and had lots of tests to try to find out what was going on. We finally got to the bottom of it, but December through February were difficult months with all of the dizziness, doctors, and medical appointments.
It was difficult to know what was going on and whether the dizzy spells were anything truly worrisome or just one of the non-life-threatening quirks of being me. Considering my infertility saga, my ongoing issues with depression and anxiety, and my IBS, I seem to have a lot of non-life-threatening quirks of being me.
I’ve had dizzy spells like this in the past and I’ve seen doctors about them in the past and never really got answers about why I was having dizzy spells. All the obvious causes were ruled out. I was healthy–wasn’t that great?! But it’s frustrating to be told that my tests are “normal,” when the dizziness in my head has me feeling really off-kilter. I don’t consider “off-kilter” to be a normally functioning state.
Nobody ever said it, but whenever I got my dizziness checked out in the past, I always felt like the implication of the “normal” test results was, “it’s all in your head.”
In time the dizziness would pass on its own and I would go back to normal functioning, not really clear about how or why I got back there, but grateful that the dizziness was gone. Life would go on for weeks or months at a time before another dizzy spell would come on.
Sometimes the spells would come just once and then be gone and that would be the end of it. Other times, the dizziness would come in spell after spell, over and over, multiple times a day, for days at a time. These times were more rare, but always got my attention in a way that forced my hand to seek medical attention whether I wanted to or not.
It was one of those spell-after-spell, day-after-day times that crept up back in December. I felt this dizzy offensive provoking me to go to my doctor but I resisted it ever as hard as I could. I did not want to go through one more round of tests that would all come back normal. I knew the message I would hear was that this was all in my head.
But, I tell you, there is something wonderful about community, about family, about my dear husband, in particular. He saw the way I was suffering from my dizziness, the way I was barely making it through each day, and he urged me to get it checked out. So I did.
I started with our family medical practice and right away something felt different about the care I was getting. After describing some of my symptoms, I asked the doctor, “Does that make sense?”
“Anything you say makes sense,” he replied. “It doesn’t fit what I know to diagnose, but anything you say makes sense.”
To me, him saying, “Anything you say makes sense,” were the most important words of the entire appointment. It was as if he said to me, “I believe you. What you’re experiencing is real. It’s not just in your head.” Well, that’s what I heard anyway. Those words encouraged me to persevere from there to the Ear, Nose, and Throat specialist (ENT) to which I was referred.
The ENT I saw was also very supportive and encouraging and gave me that same, “I believe you” vibe. I was so very grateful for his approach. He ordered some tests. Those turned out to be normal except for one having to do with my balance system. Nonetheless, the ENT felt strongly that my symptoms indicated a neurological cause, so he referred me to a neurologist.
That’s when things got serious. I mean, I thought I might have an inner ear problem, and now all of a suddenly, we’re talking about my brain!
A lot of doctors will tell you to stay away from the internet. “Don’t google your symptoms,” they say. And I know a lot of folks freak out when they read about diseases on the internet because they imagine the worst.
But I’m not one of those people. The internet is my friend and it’s a very helpful and informative friend at that. I read medical articles with a grain of salt and only look at trusted medical websites.
Reading about symptoms and causes helps me get a better understanding of what I might and might not be dealing with; this gives me peace and helps me take charge of my health instead of just waiting around for my next appointment. So I was thrilled when my ENT offered a couple of possible neurological causes of dizziness and suggested I look them up online.
There are a lot of neurological causes of dizziness. Some of them are pretty serious, even life-threatening. It was good to know about these–even the life-threatening ones. Quickly I realized that a lot of the worst neurological causes of dizziness didn’t fit my symptoms, so that was a relief.
Still, my dizziness remained a bit of a mystery to me.
When I saw the neurologist the first time she keyed in on some really obvious things about my health situation:
- I wasn’t getting enough sleep.
- I was way over-caffeinated.
- I had a history of migraines–since I was 8 years old.
“You’re a migraine sufferer,” she said. “You’ve had migraines since you were…” she looked at my chart, “8 years old,” she looked up and held eye contact with me.
“This is a hand you’ve been dealt in life,” she laid one hand inside the other as if holding a poker hand. “As a migraine sufferer your body is very sensitive to things like sleep habits, and how much caffeine you consume.”
And so she ordered me to get more sleep and wean myself off of all caffeine. Then she prescribed a new medication that is supposed to be really good for treating the dizziness associated with migraines.
She also ordered blood work, an EEG, and an MRI. She had to rule out all those serious and life-threatening neurological causes of dizziness, you know?
The EEG and MRI were loads of fun. And the price was right too! (Read those two sentences with a heavy dose of sarcasm.)
I felt pretty weary with all the tests I was doing. I had this growing understanding that my migraines were a bigger factor in my overall health than I had ever realized. I was frustrated that the doctors who investigated my dizziness in the past never linked it to my migraines! I was ready to just go with that diagnosis and not have to go through all the tests. But once we had set this neurological testing in motion, I had to see it through.
Finally though, when the blood work, EEG, and MRI results came back, everything was normal. There was nothing life-threatening wrong that we found! And that was great news!
So that meant we could be sure about the “dizziness associated with migraine” diagnosis. It was a relief to finally have a firm diagnosis for my dizziness. And it was a relief to know that if there was something going on with my brain, it was related to a condition of mine of which I am already aware.
Still, there was a part of me that felt embarrassed. Even though it was confirmed by a real medical doctor–a brain specialist even–that the cause of my dizziness wasn’t “all in my head,” the cause was something pretty obvious. I mean, I felt like I should have figured that out! My migraines are the longest-running, non-life-threatening quirk of being me of which I’m aware. Migraines have been part of my life since I was 8 years old!
I felt guilty for all that I put my family through just to find out that I needed to take better care of myself because I had been dealt the “migraine sufferer” hand in life. I actually already knew that in a way. I had done some work on identifying migraine triggers in the past and was really disciplined about those I knew about. I just didn’t realize how much my sleep patterns and over-caffeinating were messing with me. And I didn’t realize that the dizziness was a symptom of my migraines.
It was sobering to realize how out-of-control I had let my health become.
Since I started seeing the neurologist, I’ve worked hard at the changes to my sleep habits and caffeine consumption that the she ordered.
I can be a bit of an absent-minded professor type and forget to eat or sleep when I’m supposed to. I get easily absorbed and hyper-focused on one thing and forget about everything else around me. To get a project done, I would often end up working at late hours and consuming a lot of caffeine to see it through.
I thought this was all just fine, despite the fact that I was tired all the time.
At first, changing this pattern felt like an imposition on myself. I didn’t want to be bothered with a schedule! I’m a free spirit!
It was important to stop thinking about the changes as an imposition and to reframe this work as me learning to love myself (that old song by Whitney Houston, “The Greatest Love of All,” with the lyric about “learning to love yourself,” has been the soundtrack in the back of my mind). I needed to accept the non-life-threatening quirk of my migraines as an integral part of who I am and love myself enough to give myself the care that a migraine sufferer needs.
So I’ve been sleeping more and better and feeling more rested than I have in years. I dutifully weaned myself completely off of caffeine and my neurologist approved me to add back in one thing with caffeine per day. With my sleep habits being better, I don’t even miss the caffeine. I’ve also discovered a whole world of herbal teas that are naturally caffeine-free and simply wonderful.
The dizzy spells are down to once-in-a-while rather than the spell-after-spell, day-after-day, and for that I am truly grateful. And I’m glad that I know now how important my sleep habits are in the overall picture of my health, you know, as a migraine sufferer.
Learning to love myself has also meant lightening up about not figuring this out sooner. Even the neurologist said that the medical community is still learning about dizziness associated with migraine.
It’s hard work, but I’m trying to take care of myself the best I can, non-life-threatening quirks and all. I’m learning to love myself, to love this brain of mine, and to play fair with this migraine-sufferer hand I’ve been dealt.
Jennifer Clark Tinker 