We’ve all heard about Botox.
It has been FDA-approved to treat Chronic Migraine for awhile now. Some people look forward to finally getting approved. Others desperately long for a miracle to help pay for such an expensive procedure. Still others are skeptical or fearful that injecting botulism into the skin around the head, neck, and face could lead to serious problems when used long-term. Regardless of your position, you may find it helpful to follow along on my journey to determine if Botox is an effective treatment for my chronic migraine.
My back story
Once or twice a year, I get lucky and experience only a handful of attacks for the month. For the rest of the year, I get hit two or three times each week, plus one to four cluster headache attacks every week. That all adds up to more than half my days spent dealing with one headache disorder or the other.
My family rarely makes firm plans. We understand that migraine or cluster headache can interrupt almost any occasion. Our back-up plans have back-up plans. We never leave town without a fully stocked migraine kit, complete with a variety of hot and cold packs and at least one E tank full of oxygen. Interrupted plans are so common that writing about one lost Christmas resulted in Allergan awarding me the opportunity to “rewrite my day” with a classy Christmas dinner party in 2011. It was a beautiful opportunity for celebration with some of my dearest friends. I joked throughout the party that it was about time something good came from all those migraines.
That opportunity opened doors allowing me to share my experiences with others. During most of the process I was receiving a limited set of diagnostic Botox injections to determine if I was a candidate for Trigger Site Release surgery. I was determined to find a treatment that would prevent me from ever having another migraine attack again. It’s been over three years since my last visit to the plastic surgeon. I was in the middle of the third day of back-to-back cluster headaches and desperate for that next round of injections. After a long wait, the doctor finally appeared only to announce I would not be getting any more Botox.
I lost all composure. Like a burst dam, all the hysterical agitation I’d been suppressing exploded uncontrollably. The doctor quickly announced I was having a cluster headache attack and that Botox “didn’t work on clusters”. He offered me a lidocaine nerve block that ultimately made my suffering so much worse. I knew, based on the combined resources of my online headache community, that Botox did help cluster headaches. No amount of begging, pleading, or persuading was going to get me the injections I so desperately craved.
Over time I let go of the dream of a “cure”. I picked myself up and started over again, searching for truly effective, realistic treatments. Over the next 12 months, I went through two more neurologists, a physical therapist, a respiratory therapist, and 3-day hospital stay for infusion therapy before I finally found the right doctor and started making good progress. I stuck with medication trials for another 18 months before addressing the topic of Botox once again. Two prescription and three supplement preventives still hadn’t produced good enough results to get me off the “chronic” list for both headache disorders.
Armed with the results of my latest 90-day headache diary, I dared to ask my neurologist about Botox. Although he is not qualified to administer the treatment, he encouraged me to find a skilled doctor and even offered a few suggestions. His complete lack of ego was incredibly refreshing. He cares a lot more about his patients getting better than who gets the credit.
So now my neurologist is collaborating with another headache specialist from a competing hospital to ensure that I get the most appropriate treatments available. In November I had the privilege of meeting the man who will be administering my Botox injections. We reviewed my current treatment plan as well as my long, failed, treatment history. He agreed with me and my neurologist that Botox was the next most appropriate option to try.
In just a few weeks, I will return to his office to receive my first set of 31 separate Botox injections. I will arrived armed with an insurance prior authorization and full participation in the Allergan’s Partnership for Access program that helps defray the high cost of the procedures even for those with health insurance coverage. The timing could not be more perfect to test the effectiveness. My worst time of the year is nearly always between Christmas and the middle of January. My longest running migraine occurred four years ago during this time. I had an attack that lasted 22 days, non-stop, despite multiple trips to Urgent Care and the Emergency Room. Will Botox be enough to give me a break during this high-risk time?
Stay tuned next month
I will be sharing my actual experience with Botox and give you the preliminary results. Photos and detailed descriptions to come!