Confessions of a Concussed Cyclist: post concussion migraines

March 8, 2019

My post concussion migraine began within a couple hours of being hit.  While in the emergency room they gave me tylenol to help with the pain.  For a few days after the crash I drank caffeinated coffee as caffeine was supposed to help with migraines and I took Excedrin Migraine. I found that the caffeine made my migraines worse and at my first visit with my neurologist he explained to me that with a brain injury I had extra blood flow to the brain and caffeine would intensify the blood flow, making the pain worse.  Decaf it is! And still is over four years later; even a sip of caffeine will ramp up my migraine quite quickly.

At my first neurology appointment so began the never-ending game of trying to find a medication that would help control the pain.  The problem with post-concussion migraines is that although it has “migraine” in the title and it has many similar characteristics as a classic migraine (light and noise sensitivity, nausea, etc.) it does not respond to treatment the way a classic migraine does.  Four years and over forty medications later we still have not found one that works to stop the migraine.

For three years the goal was to find a medication that would completely prevent the migraine.  With the thought that if my migraine was under control some of the cognitive issues I deal with would settle down as well.  At year three there was a shift; we had been completely unsuccessful in finding a medication to prevent the migraine so we were now going to focus on reducing the intensity and if it happened to stop the migraine, great, but stopping the migraine was no longer the main focus.

Recently I had a pharmacist ask me how much my migraine stopped me.  I told him “it doesn’t” that I would have no life if I let it stop me. I avoid noisy places but I have never once cancelled plans because of my migraine.   I never leave home without tons of medication and ear plugs. Sometimes I need to lay down while I wait for pain meds to kick in, but I don’t stay in bed all day because of my migraine.  I think some people believe I am faking or exaggerating the pain/intensity/duration of my post concussion migraine because I do not let it stop me. It is hard for people to imagine functioning with a constant migraine.  

For the first few days and weeks after I got hit I was waving my white flag in surrender, I felt it was impossible to deal with the non-stop pain.  Over four years later, I just laugh at the old me. Since August 19, 2014 I have had less than a dozen migraine-free days. You adjust. You forget what it feels like to be migraine free.  On the few days where I have been migraine free, I actually find it worse than never being migraine free. I get weird looks when I say that but let me explain. The migraine free days are so few and far between that when you have that “once in a blue moon” migraine free day, it is difficult to then go back to a migraine the following day, not knowing when that next migraine free day will happen.

Daily I take medication to try and stop the migraine/decrease the intensity.  I take medication when needed to attack the pain when I can no longer handle it. I also have a medication I can take when the pain makes me nauseous.  I have tried alternative therapies for my post concussion migraine (massage therapy, chiropractic therapy, acupuncture, essential oils, gems/stones/bracelets/necklaces, etc.) I have light sensitivity.  If I’m outside I prefer to wear sunglasses to block out that light. If I am inside I prefer to have the least amount of lights on as possible. And I prefer those lights to be a very soft light versus harsh lights such as fluorescent lights.  Fluorescent lights flicker non-stop. Most people cannot even tell they are flickering, but to someone with a head injury the flickering is intensified. I have sound sensitivity. I not only get very overwhelmed by sound (that’s a TBI thing) but loud sounds, sharp/high pitched noises can ramp my migraine up in a second.  I have always had sensitive hearing (growing up my parents neighbor had a line buried under ground for an invisible fence for their dog and the line hummed. No one else could hear the noise, but I could and the humming drove me nuts. I can hear dog whistles too.) but it actually became worse when I rattled my brain (and subsequently rattled my inner ear).

Headaches after a brain injury are a very common side-effect/symptom.  For most people however, the migraine disappears within the first few months.  Why has mine stayed around? Some of it is because this is my second concussion in a short amount of time.  Some of it is the damage done to my head was severe. And some of it is just crap luck on my part (that last part is not officially recorded as a reason by my neurologist!).

I’ve found over the past four years that people are confused by a post concussion migraine.  What I am dealing with is not due to emotions, diet, environment, or stress (typical causes of a migraine) it is strictly due to damage to my brain.  For me that is one of the things that is so frustrating in trying to treat it because I cannot simply change my diet, take a probiotic, or do yoga to relax and have my migraine go away.  My case has been brought to many doctors in New Hampshire as well as out of state, trying to find something that could work. Unfortunately, there is such little research out there regarding post concussion migraine it is really a guess and check game.  When brought to the table of other doctors, they always agree with everything my neurologist has done so that is very reassuring.

For now, I move forward.  I continue seeing my neurologist every 3 months (or less) and I continue trying anything and everything that may work (medications, alternative therapies, etc.).  And I hold on to a small amount of hope that maybe, one day, this post concussion migraine will actually go away.