The third time is a charm
About 13 years ago I was started on a preventive course of Verapamil to tame the horrific cluster headaches that decided to join migraines for a party in my head. I didn’t get to stay on it long enough to see complete results thanks to a layoff and subsequent loss of insurance. I do remember that it helped somewhat.
A few years later I couldn’t take the pain anymore so I asked my doctor to put me back on Verapamil in the hopes that it would contain the beast once again. Not knowing any better, he prescribed 80 mg of sustained-release Verapamil to be taken once a day. I couldn’t remember what type or dosage had worked the first time, so I didn’t know to complain. If I had, my doctor would have gladly experimented with me. After about 6 weeks of continued attacks, I gave up and we moved on to other preventive options.
None of them worked. For the next 5 years we tried multiple preventives without success. I was worn out and discouraged, choosing to get off all preventives and just treat the attacks symptomatically. My doctor agreed. He is a great physician, but he’s not a headache specialist. We fumbled around together, but never seemed to find the right remedy. We never went back to Verapamil, assuming that it was just one more treatment failure in a long line of failures.
I went 2 years without a preventive, then finally got up the courage to try again when I learned of Botox. We all wrote off Verapamil and kept trying other options.
Then a neurologist suggested a sleep study. Sure enough, I was diagnosed with Sleep Apnea and prescribed a CPAP machine. Untreated sleep apnea was making it difficult to treat the headache disorders, but treating it wasn’t enough to stop them.
I finally found a neurologist who suggested problems with my neck and back might be contributing to the frequency and severity of attacks. I went through about 3 months of physical therapy that included myofascial release therapy. It was there that I learned exercises to improve mobility, flexibility and strength of my neck, shoulders and back. Again, it helped a little with migraine attacks and did nothing to help the cluster attacks. This neurologist finally convince me to try Verapamil again. He started me on a low dose of extended release Verapamil and gradually increased the dose. It started helping, but not enough to keep me from needing Prednisone to break bad cluster headache cycles more often than was indicated.
By June I was in constant pain that was unresponsive to treatment. My family doctor admitted me to the hospital and contacted another neurologist he thought might be able to help. Lo, and behold, it was the same neurologist who had prescribed Verapamil 13 years ago…and he remembered exactly what dose it took to get the headaches under control.
Three times I tried the same medication.
Twice it failed, not because it wasn’t the right medication, but because the prescribing doctor did not know how to correctly prescribe it in order to treat both headache disorders. I almost gave up on the one drug that could help me because of the ignorance of doctors who were not true headache specialists.
The third time is a charm. I still get migraines and cluster headaches around once or twice a week. For some people that would be horrible, but for me it’s a blessing. I actually get to enjoy days in between attacks when I am not fighting off a “hangover” or gearing up for a prodrome. The best part is that my real headache specialist says we’re not finished. I get to check in with him soon to see if we can knock out a few more attacks each month.
Never, never, never, never give up.