Like a Kick Drum
I have always liked the Avett Brothers, particularly the song "Heart Like a Kick Drum." I would listen to this song as I exercised, climbing stairs or hills, and my heart would pound so hard in my chest (Ba Boom....Ba Boom...Ba Boom...), like a kick drum. I was trying to be a good migraine patient and do my dutiful exercise. But it was not easy. I just seemed so out of shape. Still, anything to keep away the migraines, with aura, that made my head beat just as loud as my heart.
I have had migraines with aura since I was 11. I am 45 now. I have tried every medication there is with little success. In October of 2010, I was on 100 mg. of Topamax and also Verapamil (not for my heart, but my head.) Still, I was lucky if I had a month with only six migraines with aura even while so heavily medicated.
I have known I had an atrial septal defect in my heart since I was 29. I was pregnant with my second child when it was discovered. I had a catheter ablation to stop my racing heart and was told to "keep an eye on it" and take antibiotics before I went to the dentist. I never really made the connection between my heart and my head....
Not until my neurologist brought it up. She had tried every single medication on me to no avail. She was concerned because an MRI had revealed white matter lesions on my brain, a few that she "didn't like." She wanted to stop the auras in particular, and was thinking of holistic medicine as my next option. She also thought I should see a cardiologist about my ASD since I really hadn't seen one in awhile.
I was aware of recent research indicating a connection between holes in the heart and the pounding in our heads, but it didn't look promising. Still, I decided I should go just because I had been told to periodically check my heart.
I did. Turned out I did not just have an ASD. I had an ASD and a PFO, next to each other, and together, measured rather large. Although I can't tell you how much blood was flowing through them, I know the cardiologist said I should fix them to decrease the risk of stroke and because current practice was to close ASDs when discovered.
On October 28, 2010, I closed both my ASD and my PFO. They needed to use the largest closure device they had. It took twice as long as anticipated because of the challenge. I had a migraine only two days later, so I just assumed at that point it was not going to impact my head.
Weeks later, my heart got annoyed. It skipped, and jumped, for hours on end. I was weak and exhausted from the exuberance of my newly repaired heart. Apparently, this was "normal" as the tissue grew into the heart and my electrical systems figured out how it all worked. But I felt terrible, exhausted, and wondered why I had done any of this. My migraines had not gone away. My heart was a mess.
But then it passed. And two strange things happened.
First, my heart didn't beat like a kick drum any longer.
I could climb stairs and go up hills, with just a steady beat. I didn't feel like it was going to come out of my chest any more. "Is this what it was supposed to feel like all along?" I asked my cardiologist. "Yes." He replied. Wow. So much easier to exercise.
Second, my migraines... they didn't go away, but they very nearly did. I am down to one a month. Down from 6 to 10 a month to one a month. Its like being a different person. No more auras. No more migraines. No more pain. My head does not pound like a kick drum.
I am off the Verapamil. I have not succeeded in getting off the Topamax yet. I have been on so long I will need to go very slow to wean myself off. But with only one migraine a month, my doctor and I have decided to give it a try in May. If I can reduce my Topamax 25 or 50 mg, that will be a victory. I do take 81 mg of aspirin and plan to continue for the rest of my life.
So, I cannot say that fixing a PFO or ASD, or both as was my case, is the cure for migraines. I can only say that in my case, it dramatically changed both the function of my heart (which was a good enough reason to do the surgery) and the frequency of my migraines.
I have talked about this with my neurologist. Based on her experience with me and one other patient, as well as her reading of the studies thus far, she believes the surgery works for a very small group of patients: those with migraine with aura, who are medication resistant, with MRI's showing white matter lesions, and significant blood flow through the holes.
I hope my story inspires some of you to consider this option with your doctors, but go into it not thinking it will cure you. Also, you need to understand it is not easy, and you may experience migraines immediately after the surgery, as well as some problems with the rhythm of your heart.
Have you taken our Migraine In America Survey yet?