Every morning moves along as if it were a perfectly tuned clock.
The same three rounded scoops of ground Sumatra go into my coffee maker. The same half a pot of coffee sits staying warm as I make my way through each cup.
The same 2 scrambled eggs get fluffed and covered with cheese. The half of a bagel gets smeared in cream cheese.
The same pills get rationed out.
But they aren’t the “same” pills, really. It’s the pills I’ve got this month.
In the morning I’ve got my daily preventative, it’s only one pill in the morning compared to two at night.
But, then there’s the tiniest of white pills. They gave me the script for this after my ER visit. I couldn’t tell you what it’s called and to be honest I couldn’t tell you what it does. I thought it may be a decongestant of sorts, but my still highly congested nose begs to differ.
Then there’s the rounder, harder to swallow white pill. Biotin. The supplement I started taking to combat the clumps of hair that were falling out at an alarming rate. This one I know is working.
And then, my now daily allergy medicine – flonaze… because if my sinuses are clearly agitated it’s got to be allergies and they won’t explore another option, even though the flonaze also has done nothing to impact the copious amounts of tissues I go through each day.
Every day like clockwork.
These aren’t scary. These don’t have some risk associated that makes me have to go in for regular liver tests. These don’t even have any side effects.
But you see, 2 feet below this counter lies a colony of pill bottles.
More hide in my purse.
And they scare me.
It’s been seven months almost since I received word that I’d been overusing my medications.
That’s when my journals started. I had to have some way, more in depth than any “migraine app” could allow, to track the ups and downs of pain and to physically write down when I’d taken medication.
That was June 9th. I called out of work that day. I took one of my abortives, that abortive didn’t work. My notes show that my hot shower and a bowl of ice cream provided my relief that day.
I can look at that chart. I can see where my pain dipped back from it’s 9 around noon, to a 5 around midnight. But I also see that by 6 am the next day, I was teetering back at an 8.
That probably doesn’t mean a whole lot to you.
But when I sit here and I look at my charts from December, I see that same pattern. I take medicine and maybe it helps, and if it helps within 2 or 3 days, I’m back in so much pain that I need more medicine.
My medication overuse diagnosis taught me that these high powered pain pills can’t be taken more than 9 times in a month. It also taught me that regular pain medicine like Advil or Excedrin count as one of those 9 times.
The problem that exists is that with pain medications, and those designed to treat migraines have a listed side effect of “headaches” and if you consume too much of any of the medications your body is going to go through withdrawal.
And I can’t help but look at my charts and see that I’d been averaging 5 or 6 medication days in a month and wound up taking medication 7 times in December. One single day higher than normal. And maybe it shouldn’t count that one of the days was what was given to me in the ER. But it does count.
Last night, I gave in. I took my abortive. I fought it all day long but all I wanted was to sleep.
Last night was “Medicine Day 4” for January. Today is only the 13th.
So there’s my first fear: Dependency.
The simple idea that I may slowly be falling back into that cycle where I’m having too much. But I know, deep down that it isn’t true. It’s just my mind playing a mean trick. I know that I need to be allowed to take my 9 doses of medication each month. Certainly is better than my 28 doses per month. 9 doses won’t hurt me. But my mind is playing tricks. And my mind also doesn’t want to accept that I need that medicine.
My doctor won’t respond to me lately. I’ve called. I’ve emailed. I’ve expressed that I want new abortives because the ones I have either don’t work or scare me. To be fair, the one that scares me is the one that works most often.
But, this brings me to my next fear: Trial and Error
I’ve basically run out of medications to “try” because we’ve gone through the few weeks to few months that are considered trial periods with no success.
So, if I’m asking my doctor for something new, what do I do if it fails.
I have an appointment early February. I’ll be receiving my first round of Botox. But Botox scares me. There’s thousands of people who have been treating their migraines for 10+ years with Botox, but these people don’t have their migraines under control. Maybe they had enough improvement to justify it, but what is enough?
Personally, I’d like to say my goal with Botox is to stop the 9 and 10 level migraines. That doesn’t even put me to a functional level, but that’s still a huge step in my eyes.
But Botox is every 12 weeks. And usually you don’t notice real improvement until after your second go around… I should have started this at Thanksgiving when we were supposed to. Now I won’t start until February. If round 2 occurs in May, that means any “hope” at taking a course or two over summer vanishes.
And then there’s the other half of the Botox fear: Side Effects
Botox could permanently change my face. Botox will cause bruising.
What if, it proves to be a bust and I’ve dramatically altered the way I look?
I’m not new to side effects.
I wish I could say I never would have tried Aimovig had I known of all the possible side effects and that I’d experience them all… but that isn’t true. That small promise of hope outweighs every potential life threatening or altering side effect.
Sure, I want to throw my remote through my TV every time an add pops up telling me that Aimovig will give me my life back, but it’s given so many other people the opportunity to say “I’m here” and I just didn’t fit into that group.
We don’t know side effects until we go through it.
I didn’t know I’d be allergic to Topamax.
I didn’t know triptans would make me feel depressed and just not myself.
And years ago, no one knew that Botox would have a side effect of improving people’s headaches and migraines.
At the end of the day, I just want my life back. But at the end of the day, that isn’t a feasible goal with any medication or treatment.
So yes, I’m scared.
I may put on a brave face for the world. I may soldier on like I have for many years now, but when the pain lingers and grows. When I sit in the dark. When I reach for everything but a pill bottle, it isn’t because I want some “natural treatment” it’s because I’m terrified. I’m terrified of that feeling that is bound to come as the medication wears off. I’m terrified that the medication won’t work in the first place and I’ll have poisoned my body just a little bit more.
Maybe, I’m just terrified that it’ll work.