Issues / Living / Uncategorized

What It’s Like When Your Brain Betrays You

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Over a little more than a year ago, on an overcast day in the middle of the week, I was in a Publix, buying a Diet Coke and Jalapeno Kettle Chips (which I wasn’t supposed to be doing as Jalapeno Kettle Chips are my binge-secretly-in-the-car-food), when I started to feel uncomfortable.

I’m a person who has lived with anxiety my whole life, so feeling uncomfortable is truly old hat to me, I literally feel uncomfortable just being alive in my own body.  But this time was different, I felt almost stifled, like a strange foreboding was washing over my being, like a dark grey ominous cloud was filling the inside of my head.

By the time I reached my vehicle, I knew what was about to happen.  A little spinning dot had appeared in the center of my vision.  I blinked my eyes frantically because I thought, maybe if I pretend this is something else, it will just go the fuck away.  But when the dot began to spread into a full on rainbow of marquee lines across my vision, I felt my pulse quicken and reality began to set in.

I was having an ocular migraine, and I’d better hurry and get the fuck home before my vision went completely.

Because I live across the street from the store, I knew I had at least five minutes to safely drive myself back to the apartment before the blindness set in (ocular migraines make you temporarily lose your vision).  While at the stop light, I texted my boyfriend,

“Having ocular migraine.  Making my way home.  Won’t be able to see my phone soon, feeling scared.”

Once I arrived, I rushed into my apartment and began texting an optometrist friend of mine frantic things about the oncoming migraine and the genuine feeling of terror that was inexplicably setting in.

As she texted back, my ability to see straight vanished.

Now, I have had two ocular migraines prior to this moment in the entirety of my lifetime.  The first at nineteen and the second at twenty-seven.  The first time, I was terrified because I thought, “oh shit, I’m going blind, so this is what it feels like to lose everything”, but it disappeared after thirty minutes, as they do, and then after seeing a doctor and actually learning what an ocular migraine was, I was completely fine in mind, spirit, and body.

The second time, I was working in an office, surrounded by coworkers, and wasn’t fazed at all.   The florescent lights in the building started to bother me, then boom: ocular migraine.  But for whatever reason, I felt safe in that moment and went on my merry way.

But this third time was different.  This third time, while intellectually I knew was something I had experienced before, emotionally and physically I felt like I was going to actually drop dead on the spot.

While shit was going down, I was convinced I was having a stroke

“I just need to calm the fuck down.” I told myself as I stripped off my clothes and stumbled into the bathtub, turning off the lights and turning on the faucet.

I willed myself to meditate.  Because meditation is a real thing, right?

“It’s going to be ok.”  I thought to myself.  “You’re going to be ok.  It’s just your brain, and you are your brain.  You just need. To. Calm. Down.”

I directed SIRI to turn on a Meditation Oasis.  I sat still in the darkness of the bathroom.

Even with my eyes closed, colors and lights swirled in front of my vision.

My optometrist friend reminded me that the migraine shouldn’t last more than thirty minutes, and if it did, that I should go to the doctor immediately.

Forty-five minutes later of complete stillness in the bathtub and the colors and lights had finally dissolved.  I could see again, and my vision had mostly cleared.  Still, everything felt off.  Like, I could see, but it felt like a trick.  Like it felt like I could physically see, but my brain wasn’t quite so sure of that yet.

To make matters worse, as I went to climb out of the tub, I realized the left side of my arm, all the way down to my fingertips had gone completely numb.

My heart rate shot up in an instant.

“Oh fuck, oh fuck, oh fuck.”  I said to myself shaking my arm like mad, willing the feeling to return.

And after minutes, it did return, but the outside of my hand and pinky finger were still dulled.

And then, when I thought it might be over, the numbness traveled, this time taking over the left side of my face and mouth.

And then to my nose and even to my teeth and then all the way to the back of my head.

At this point, I was convinced I was having a stroke.

I called my boyfriend and we rushed to a Doctors Care, me wearing sunglasses to shield myself from the florescent lights in the office.

While waiting, I began to feel like I was losing the ability to speak.  Everything felt like a dream – almost as if I wasn’t in my body at all, like I was in a smoke filled facsimile of reality.

Words were hard.

And upon hearing those symptoms,  the PA at Doctors Care advised me to get my ass to an Emergency Room ASAP saying words like “stroke, brain tumor, aneurysm, and Multiple Sclerosis.” I cried in the car on the way there.

I was really fucking scared.

The doctor at the ER brought some immediate relief (shaking my boyfriend’s hand, but not mine) as we sat in the exam room.

“No, you didn’t have a stroke.”  He said after performing the same tests as the PA had at Doctor’s Care.  “But you do need to rule out other things – like MS.”

He recommended I see a neurologist right away.

And the doctor train continued as I searched around for a neurologist in my area (tried to find a woman but there were scant to choose from, sadly)

It would be a few weeks before I could get into see the doctor, and in the meantime, my brain had, what I can only describe as an epic meltdown.

After the migraine hit, I had a relentless black spot in the inside corner of my left eye, perpetually obstructing my vision in a way I found very distressing.

And I couldn’t stand any kind of light whatsoever.  I began wearing sunglasses all the time – inside, at night, in bed, you name it.

At random moments in the day I would experience numbness in different parts of my body – with no warning and for no reason.  I also experienced confusing dizzying spells that would hit me like a ton of bricks while I was doing mundane things like opening the refrigerator, turning off a lamp, or parking my car.

“I feel like I’m being punished for something.”  I said to my boyfriend one evening.

Sometimes, while sitting calmly, I would feel strong rushes of adrenaline pulsate through my body – some so strong I would involuntarily jump to my feet.

Sometimes, while walking my dogs I would begin to feel that weird and cloudy feeling I had before, like I wasn’t really there, like I was in some weird detached dream.

Sometimes, out of nowhere, I would get a strange choking sensation, like my throat was swelling up and there was nothing I could do to stop it.

Trying to sleep at night was a struggle of epic proportions – when I closed my eyes it felt like someone was shining a flashlight directly into my face, it was almost impossible for me to experience actual darkness.  And my body would or could not relax, preventing me from ever lying in one position for more than a minute, tossing and turning in a never ending quest to chill the fuck out.  And my left hand was constantly falling asleep in a frighteningly dead way.

It all left me with a never-ending, unsettled, disturbed malaise.  This was my new normal.

But I was lucky.

When I finally met with my neurologist, he was dismissive of the other doctor’s notions of MS or stroke.

“No, no.  I see this all the time.”  He said to me while I sat in the exam room with sunglasses on.  “These are classic migraine symptoms and probably, a panic disorder.”

“But I don’t understand.”  I said to him.  “I’m not panicked about anything.  I’m feeling these symptoms for no reason at all, when there is nothing to be afraid of, and when I feel calm and collected.”

“And that,” He said, “Is why it’s called a disorder.”

“But just to be safe…” He continued.  “We can order an MRI to make sure we’ve ruled out everything else.  Also, I’m going to prescribe you a blood pressure medication that’s used to treat migraines.”

I was freaked out again, because at this time I was freaked out about everything, and I was skeptical that a blood pressure medication was going to help my particular problem at all, but I went along my way.

As I said, I was lucky, and although I was worried about everything including a brain tumor, the MRI came back clean.

The symptoms, all of them, persisted for quite a while after seeing my doctor and starting the medication.  I would ruminate to myself at night about it – sometimes getting a little misty eyed over the way my brain had so thoroughly betrayed me.

I was scared – a lot – about what might all of a sudden overtake me, and for no reason.

I was scared – a lot – about how little control I had over the most basic functions of my body and mind.

But as time passed, and with the help of the medication, the symptoms began to ever so slowly fade away day by day.

I could still feel them coming on – the panic, the detachment, the numbness, the dizziness, but it was like there was a shield preventing them from going into a full–blown-oh-my-god-is-this-a-stroke-mode.  The medication protected me from myself, from my very own traitorous brain.

I kept up with the sunglasses, complaining anytime I found myself under harsh over-head lighting, but then one day I was able to take them off too.

“Do you notice something?” I said to my boyfriend at the dinner table.

“No.”  He said.

“I’m not wearing my sunglasses.”  I said.

“Oh.  Hm.” He replied.

The black haze in the inside corner of my left eye is still hanging around – although it’s faded quite a bit.  It reminds me, that not everything is always as ok as I want it to be.  But perhaps, with more time, that that too fades away on its own.

But I doubt it.

Like I said, I’ve been lucky.  Modern medicine and time have both acted as protection for me against my brain.  But I know me and I know my brain – and ain’t no way that bitch is gonna let me slide by without leaving a mark.

I guess somewhere deep within my psyche, I’m still getting what my brain thinks I deserve…and there’s not a beta-blocker strong enough to protect me from that.

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