My Botox Experiment
In the summer of 2012 I got my first Botox injections. In a matter of minutes around 150 units were now semi-permanently under my skin. My headache specialist said it could take 4-6 weeks to feel any effects. And after that, if I didn't feel any benefit, I could still see improvement in the second or third round.
I left the office that day, fingers crossed.
The migraines persisted, and we made some medication adjustments. But by the second round I was feeling relief. I still don't know if those improvements were more due to the medication adjustments or the Botox. I do know that Botox lowered my pain levels of many attacks. Slowly I began reclaiming my life and my health.
In the fall of 2013 I moved and found a new headache specialist in my new area. I explained that after a year of receiving Botox I had gradually seen improvement. So I asked about stopping Botox. I didn't want to take a medication if I no longer needed it, and was concerned about the possibility of long-term side effects.
As a patient, I have found slim resources on how long someone should receive Botox for chronic migraine or how a patient knows if they still need the injections. One source, a FAQ published by the American Headache Society, states: “In clinical practice, it appears that some patients receiving Botox-A will improve to the point where injection therapy may be discontinued without relapse to chronic migraine, but as yet, we lack the means to identify those patients in advance.”1 Though I was partially flying blind, my instincts told me I might be one of those patients. When looking back at a list of old challenges I could tell that I was improving.
Luckily my headache specialist seemed experienced with my question. She suggested that in 2014 I start extending my treatments from every three months to every four months. I would keep a headache diary, and the majority of the responsibility was on me to tell her how I was doing.
Poke. Pinch. "Keep in touch."
Spring 2014—On the first try I was doing great until the last two weeks before I was scheduled to get Botox—I started getting more frequent and severe attacks. By the time I was sitting in the chair in my doctor’s office, I was more than ready for the injections.
We kept on the 4 month schedule all year and the next two rounds went fine.
Poke. Pinch. Wait...
Poke. Ow. Wait…
In December 2014 we reviewed my headache diary. Despite the initial hiccup, my frequency and severity was lower and I was less susceptible to triggers. She said to me: "We've converted you from episodic to chronic!"
We planned to extend the treatments to every 5 months, and despite my impatience I agreed.
At the 5-month mark I emailed my doctor telling her I averaged 2 attacks per month. I asked for the ultimate test—to extend the injections three more months (so 8 months total) to give it time to wear off completely. She agreed, and told me she was glad I was doing so well.
Close to the 7-month mark I started to feel the Botox wear off. My migraines were slightly more frequent (about 3-4 a month) and more painful. However, I was nowhere near the level I was before I started receiving Botox. It was more like my migraine frequency and severity before becoming chronic. Except now I had access to abortive medications and a toolkit to help me stay feeling better.
No more waiting, I decided. I'm done.
I asked my doctor if we could cancel my scheduled injections indefinitely. She agreed, and now I am going on 8 months Botox free. The other day my husband saw my forehead wrinkle up with a laugh for the first time in three years. He kissed my forehead.
Have you shared your migraine story with us yet?