The Side Effect of Migraine Relief I Didn't Expect

During the pandemic, I’ve spent a ton of time on my own. Sure, people are climbing up the walls to see friends, family, strangers, anyone! But somehow, I am OK over here on my island. A few months ago, I started to truly think about how the pandemic isolation was affecting me and why it wasn’t affecting me. What I ultimately realized is this new quarantine lifestyle isn’t that new to me. I have been on an island just like this for the majority of my life. Not because of a pandemic, but because of pain.

Two years ago, my life changed in a million ways thanks to a new injection on the market. I went from 25 migraine days a month to just one or two.  I’ve never lived a life free of migraine pain — and when the pain lifted, I realized I had been living in a haze and under this oppressive force. It was like a net full of rocks was lifted off my body while trying to swim to shore. I didn’t even notice how suppressed I was until the pain was made manageable. Sure, I still have fibromyalgia and have flare-ups with stress, lack of sleep, and just being a person, but it’s a new standard of pain I can accept. Instead of combine and conquer, I only have to worry about one pain at a time most days.

Yet, even without daily migraine attacks, this shot gave me some side effects I didn’t expect.

One of the side effects of migraine relief can be an acute awareness of migraine conditioning. For 30 years, I didn’t go places, do things, or talk to people in the majority of my free time. I went to work/school, came home, put a heat pack on my face and fell asleep listening to “Friends” after popping a triptan. That was life.

I’m an introvert by nature — I don’t get my energy from being around people anyway, so I was mainly OK with the lack of interaction. However, with the pain routine missing, what should my routine look like now? Something I think confused people when the pain relented, is that I didn’t just leap at the chance to do all the things all the time.

Sadly, conditioning from migraine means I’m still not used to going places, seeing people, or talking to people in the majority of my free time. I’m used to rationing my energy so I can go out once a week (maybe) and do what I can to ensure it’s a “good day” through extreme medication. So, now I get emotionally and physically exhausted easily. It takes absolutely no time at all for me to feel tired or overwhelmed. I’m used to being alone, in my quiet, all day. Every day. Going nowhere. I haven’t built up stamina to do anything — emotionally or physically.

One of the hardest things for me has been crying when I say “no” to an invitation simply because I have nothing left to give that day. When I was struggling with daily migraine attacks, I gave about 80% of my energy to work daily and had 20% left for anything/everything else in my life at the end of the day (including dealing with fibro pain). However, what surprised me is even once the cloud of migraine pain was gone, I still used about 80% of energy at work per day. What’s more, it’s still extremely hard for me to handle more than one extra event in a work week. Each day, I have to ration my leftover energy so I can give as much of myself as possible to anything outside of work — especially other people. I realize the pain is gone, but here I am still figuring out how to do more than one thing a week and where the energy is going to come from — and I still need to do that.

It baffled people I didn’t want to go out on the weekend, every weekend, now that I could. But my weekends are where I restore my energy reserves. On the weekends, I’m not at my job talking to people for eight hours and it’s an amazing respite from everything that drains my emotional/physical energy. It’s like recharging my dying battery over two days. But if I do too much during the weekend, it means I’m starting with less than a full tank each day for the rest of the week. I don’t even start at 100% before work — I didn’t recharge enough. I look around my house on Sundays, alone, and realize it’s all still true after getting rid of the oppressive force of daily migraine attacks two years ago.

The moral of the percentages and talk of batteries? I have to say “no” a lot — still. I have always been terrified people thought I was using migraine as an excuse, that I was faking or just complaining. Now, when I have to say “no” to something, it breaks my heart I can’t explain why I need to, or would rather, stay at home alone instead of doing something that night.

Yes, I have learned to love spending time alone — and even prefer it most days — but if you think about it, I’ve had to spend a lot of my life alone. I’ve seen the family and friends who have stood by me all these years, and loved every minute of it, but I think about how much time of my life it’s just been me and my heat pack. I realize I shouldn’t feel guilty because I say “no” just to hang around my house alone. But I feel like the desire isn’t viewed as legitimate by most people. It’s just an excuse because I don’t want  to do something. If I need to recharge or if I’m out of energy for the day, I’m not avoiding you. It’s not you at all.

I desperately want the people I love and the new people I meet to understand, but it’s something people with chronic pain deal with and feel as a community. It’s going to take more than a day, week, year, few years to undo 30 years of conditioning, I know that. But the hard reality is, even though I’ve ditched a lot of my migraine pain, I’m still struggling with the side effects.