Yeah, it’s true…. I’ve got that chronic ish

I was kissed at birth, or some random moment in life prior to age 12, with the omen of migraines thanks to my mother, grandmother, great-grandmother, and quite possibly my great-great grandmother.  I think it’s great to inherit things from your family…  I think it sucks when those things end up being migraines.  Make that up to 25 migraines per month.  Along with the migraines are various medications.  There was the one that made me sleepy almost immediately…  The one that temporarily paralyzed me…YES, I SAID PARALYZED!!! I couldn’t move for a few hours so I cried myself to sleep.  Then there was the one that made me sick to my stomach. Let’s not forget the one that makes people skinny…that would be great IF I was one who actually needed to lose weight.  Oh, and the one that I was told to take AFTER the other one didn’t work.  Needless to say, it all gets old…quick. A drawer full of pills I refuse to take.

I hate it when people down play migraines like it’s “just a headache” without knowing what it’s like to live with them. It’s not fun…ever! The pain can be unbearable. Getting through a day at the office can be torture. There are times I want to yank out the side of my head that hurts or, perhaps, bang the other side against a wall to possibly numb the constant throbbing.  I’m not saying this is a rational thought … I’m saying it’s my thought in the eye of a migraine.

If you don’t understand what I’m saying, do me a favor… Imagine having a conversation and you begin to stutter because your mouth is moving quicker than your brain can process your thoughts… Imagine standing up from a chair and you have to catch yourself because your balance of off… Imagine constantly feeling like someone is banging your head with a hammer as you walk… Imagine feeling the pain travel all over your head… Imagine having blurred vision and you don’t quite understand why so you blink your eyes over and over again thinking there’s gotta be something covering your eyes…

Imagine all that happening at once but it gets worse…. Now, there’s a numbness moving along the left side of your body. Your arms and legs are tingling and cold.   Your face begins to slouch on the left side…it’s going numb as well.  You can feel the tingling move from your ear to the center of your face.  As it moves, your face heats up like you are sitting by an open flame.

You end up in the ER with a group of people calling for the STROKE team.  You’ve got one person pulling your clothes off, one poking around your arm to find a vein for an IV, another taking your temperature and blood pressure, and few other folks asking you a ton of questions.  You’re speaking but everyone is looking at you with a concerned face because they don’t understand what you are saying.  You hear yourself speak and it doesn’t sound like the words you are trying to communicate.  You begin to cry as the pain continues to get worse.  You have no idea what anyone is saying because it’s all “doctor talk” and from the looks of the small army around you, you begin to think you are going to die.

All the white coats begin to swirl around you.  Although you are clearly the center of their attention, the main attraction, you feel like you are being ignored.  They push you out of the ER.  You are off for further tests…a CAT scan and a few other things.  During the tests you begin to feel a little better.  Your words are coming out just as you hear them within.  You are beginning to convince yourself that you are gonna make it and, despite the IV, hospital gown, and heart monitor, you are going live and get the hell outta here.  WAH HOO!!!!  That quickly turns into the reality of getting admitted and assigned to a room in the stroke unit.  This all happened a little over two years ago and it feels like it was yesterday…

So, I end up staying at the hospital for a few days.  I can’t count how many times my blood was drawn or how many trays of the nasty food was left on the damn tray.  The constant movement of beds and people.  The sounds of the monitors.  The lack of privacy.  It was all too much! It took more days than I would have wanted but my MRI results were clear… NO STROKE!!! Yay, that was really good news.  BUT I still had no freakin idea of what actually happened.  I just knew that, despite pumping my IV with drugs, I was STILL battling the same damn headache I had when I arrived in the ER.  Nothing was relieving the pain.  I was later told by my doctor, that until my MRI results came back, he instructed the other doctors and nurses not to medicate me with anything other than what he on my chart out fear of triggering another stroke…IF what happened was a stroke.  What I received through that IV was basically liquid Tylenol. Appreciate that doc! Really wish it didn’t take a week to lose the headache though.

I was discharged with all sorts of instructions.  I had to visit my doctor two days later.  I was given a new medication to take for my headache shortly before I received my discharge papers.  I had to fill that prescription.  I had to see the ear, nose, and throat doctor about the sudden onset of the constant ringing in my ears.  Apparently, there was concern I was loosing my hearing.  Turns out… it was just the opposite.  I’ve got super ears!!!! That’s right folks! I can hear everything ALL the time.  It’s great for listening to conversations I’m not participanting in but not so great when I’m trying to sleep and I can hear the train that’s a few miles away or better yet that freakin Kenny Chesney concert a month ago. The next thing was for me to go see a Neurologist at one of the best hospitals in my area.  I made the appointment.  It was several months away.  On the day of the appointment, the Neurologist listened to me talk about my headaches, looked over my paperwork, and reviewed all of the tests on a CD.  In less than 20 minutes, I was diagnosed with chronic migraines.  I felt relieved knowing there was a name for it other than “just a headache” but I was also afraid of what that meant for me, for my life, for my future.  I was put on a daily medication until the headaches went away and told to calendar my headaches. In addition, she wanted me to calendar any triggers or patterns I noticed at the time of my headaches.

6 months later my headaches went from 25 per month to 2-4 per month.  I stopped spending so much time in the house buried under the covers hiding from daylight or any light for that matter.  I was able to socialize and workout again.  I felt amazing!!! There were months here and there that weren’t so great but I knew what was going on and what to do.  I was no longer living in the world of the unknowns. That awesomeness lasted for about a year.  The headaches slowly came back.  The pain was much worse than I remembered.  All I wanted to do was cry.  In my desperate attempt to avoid my previous life of pill popping (not literally, but just the idea of having to take medications again) I began reading about different diets and how food can impact things like migraines.  I decided, after a blood test revealed I have a gluten sensitivity, to become gluten free.  So far, so good.  It’s a lot of work and hella expensive compared to food WITH gluten but why put a price on health, right? It’s worth it.  It’s been a long journey, the headaches are less frequent and I’m no longer taking any medications.  The pain when I have a headache isn’t as bad as it once was.  I realize my headaches come if I haven’t had enough sleep or if I’m stressing over something.  I try to get 6-7 hours of sleep and I leave all things that stress me out alone.  It’s working well.

Let me be clear here.  I’ll do anything to live without migraines.  I’ve no desire to stay at a hospital again.  I’m going to have my babies in a pool in the center of my living room…when that time comes…just to avoid the hospital.  Hospitals are NO fun. Now, I may spend time at my doctor’s office with him trying to convince me that I’m not dying BUT I’ve never wanted to spend ANY time in the hospital again, EVER.  I’ve been called a hypochondriac multiple times in my life.  I’ve spent a great deal of time diagnosing myself with random things so much so that my doctor’s office knows my voice.  I’ve gotten a lot better and have cut my visits from several a month to once every 3 months or so.  I’m sure my insurance appreciates that…lol!

I’m sharing this just because I’m sure there are many people out there dealing with the same thing.  It’s hard to explain the pain that comes with a migraine.  It’s also hard for me to bite my tongue when people assume it’s not a big deal.  News flash…it’s a pretty big deal folks.  So, the next time you hear someone mention a migraine… have some compassion. I know I’d appreciate it.  I’m sure other folks would as well.