Botox was first approved for the treatment of chronic migraine in 2010, with the recommended dosage given every 12 weeks. I first started Botox many years ago, when I shifted from an episodic to a chronic migraine patient. I received the treatment every 12 weeks from my headache specialist.
I responded well to treatment, but it wasn’t too many months before I noticed that the effects of the treatment seemed to wear off before the 12-week mark for my next dosage. This happened regularly, with the benefits losing their effectiveness after roughly nine weeks. After several months of experiencing this pattern, my doctor started “filling in” weeks 10-12 by giving me weekly nerve blocks.
After a couple of years following this regiment, he applied to my insurance company to seek coverage for me for every 10 weeks, which was eventually granted. My headache days decreased, and I no longer routinely needed the nerve blocks for each of the three weeks leading to the next Botox injections. Also, I wasn’t frequenting the Infusion Center, treatments which had to have cost the insurance company more, in the long run, than permitting me Botox two weeks earlier. This 10-week treatment worked well for the last several years. That is until two weeks ago when I received notification from my neurologist that as of January 2022, my insurance company was no longer permitting any chronic migraine patients Botox every 10 weeks. There were no exceptions and from what I know thus far, no opportunity for appeal.
Was this startling decision based on critical new medical information proving that receiving the medication two weeks early made no difference in the efficacy of the drug? No. To the contrary, study after study clearly confirms the legitimacy of the Botox “wear-off” phenomenon. This is one more indication that insurers, not medical professionals and their patients, are making medical decisions, prioritizing what they perceive as cost-saving measures.
At the Montefiore Headache Center in 2015 and 2016, a study (“OnabotulinumtoxinA wear-off phenomenon in the treatment of chronic migraine”) attempted to quantify the number of chronic migraine patients receiving Botox who experienced wear-off, “considered present if the phrase was documented, a quantitative headache day increase was present, or if there was increased use of abortive medications, bridging therapies and ED visits/hospitalizations in the 6 weeks preceding the subsequent onabotA administration.” The results showed “wear-off” was present in 62.9% of patients.
The publication Headache reported in 2019 that a significant number of chronic migraine patients treated with Botox experienced a “wear-off”: “In our clinical experience, many patients who receive benefit from onabotA experience worse headaches in the time leading up to their next scheduled 12-weeks. This determination was made after a two-year review of 143 patients with Chronic Migraine, which ultimately showed 90 of the 143 patients experiencing this phenomenon, with the wear-off typically occurring 2-4 weeks before their next injection” (Quaile).
In a more recent study (2021) of 80 patients, 70 females and 10 males with chronic migraine demonstrated that there was a significant reduction in headache days in the first and second months after Botox injections and an increase in the third month (Tantik Pak, et. Al).
Ironically, as I was sitting down to write this post, I received an email from the National Headache Foundation, asking me to sign a petition on Change.org entitled, “Allow Migraine Patients and Primary Care Providers to Set Care Plans—NOT INSURERS.” As you might imagine, I jumped at the chance and urge you to, as well. Let’s remember that doctors’ hands are often tied when it comes to starting new treatments, regimens, or medications. Please get involved in advocating for yourself and others.