Singing Her Way Through Chronic Migraine: Interview with Kristin Chenoweth
This is a sponsored blog, in collaboration with AbbVie as part of the Center Stage with Chronic Migraine campaign.
As an internationally recognized star, Kristin Chenoweth brings her infectious, positive energy to every role she performs. While Kristin plays a myriad of roles on Broadway and in TV and movies, there’s one role that has persisted throughout her adult life, Chronic Migraine patient. This role is one of the most challenging for Kristin and people like myself living with Chronic Migraine because we have to play two characters.
One is a person that is our “external persona,” where we portray ourselves to our friends, family and colleagues as healthy and okay. The other character is our lived experience with Chronic Migraine, which can be isolating, painful, and difficult to show the true impact to others because it is an invisible illness.
As a patient advocate and a person living with Chronic Migraine for over a decade, I was lucky to talk with Kristin about her experience with the disease as part of AbbVie’s Center Stage with Chronic Migraine program, including how BOTOX®(onabotulinumtoxinA) for Chronic Migraine has helped her on her Chronic Migraine journey. Read on to learn more about Kristin’s experience with her first migraine attack, how migraine has impacted her work, and how she began her treatment journey.
BOTOX® (onabotulinumtoxinA) Important Information
Indication
BOTOX® (onabotulinumtoxinA) is a prescription medicine that is injected into muscles and used to prevent headaches in adults with chronic migraine who have 15 or more days each month with headache lasting 4 or more hours each day in people 18 years and older.
It is not known whether BOTOX® is safe and effective to prevent headaches in patients with migraine who have 14 or fewer headache days each month (episodic migraine).
IMPORTANT SAFETY INFORMATION
BOTOX® may cause serious side effects that can be life threatening. Get medical help right away if you have any of these problems any time (hours to weeks) after injection of BOTOX®:
· Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are preexisting before injection. Swallowing problems may last for several months.
· Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms, including loss of strength and all-over muscle weakness; double vision; blurred vision; drooping eyelids; hoarseness or change or loss of voice; trouble saying words clearly; loss of bladder control; trouble breathing; and trouble swallowing.
Please see additional Important Safety Information below.
Kristin’s First Migraine Attack
Kristin has been living with Chronic Migraine for most of her adult life. When she had her first migraine attack, she was 25 years old in the middle of a performance with the Virginia Symphony.
“At first, I thought, something must be wrong with the spotlight. I started getting what I now call, “kaleidoscope eyes” – meaning I saw flashes of light – and couldn’t see clearly. I also got what felt like a brain freeze, like when you drink a slushie too fast, and the music sounded like it had been turned all the way up. When Act One finished, the curtain came down and I was so sick. I crawled off the stage, and they got me backstage to the dressing room and gave me two over-the-counter pain relievers.
In fact, it felt like someone was taking a hammer and pounding my head. So, I didn’t know what to concentrate on. What should I concentrate on? The fact I’m gonna vomit or the brain freeze?”
Like many of us do when we get attacks during important times, Kristin pushed herself through the attack to finish the performance. My first migraine attack lasted for days, and I have almost no recollection of it due to the headache pain. It was many years ago so I don't remember all of the details except for going to my doctor’s office. When a doctor tells you that you experienced a migraine attack, it can be hard to understand what that means for you going forward. We usually have no idea how to take care of ourselves after that first attack or prevent attacks.
Kristin noted that the rest of her performance wasn’t great, but she doesn’t really remember it.
When she went backstage, there was a doctor who happened to be there and told her that she was having a migraine attack. Kristin shared that her first attack started a whole process of understanding what a migraine is, because there is the stigma that it is just a bad headache.
Women and Migraine
During and after her first attack, Kristin thought that she was too young to get a migraine attack. Migraine attacks, she said, were something that her mom experienced. About three times more women live with migraine than men and it’s contributed to stigma around the disease.
In fact, historically, theories about women and migraine prevalence were grounded in connecting headache and emotions, starting with Victorian-era arguments on migraine as a “nervous disorder” to the “migraine personality” characterization in the 1940s. Over time, this stigma was reinforced through the stereotypical physical description of migraine with a woman holding her head with a painful expression on her face. When I was first diagnosed with Chronic Migraine, I saw multiple doctors who didn’t fully understand what I was experiencing. In fact, I had one doctor tell me that I was just “stressed” and that was the reason why I was experiencing attacks. As a woman, Kristin has also heard this. When we talked about this, she laughed and said, “I love it when a doctor says, now try not to be stressed. I’m like, good stress is still stress. Do you want me to be unfeeling?”
Over the past two decades, the perception of migraine and Chronic Migraine has begun to change with the understanding that migraine is a disease that can disable everyone, including men and women.
Working with Chronic Migraine
It took several years for Kristin to receive her official Chronic Migraine diagnosis– meaning she was having 15 or more headache days a month, each lasting four or more hours. Kristin continued with her theater career but struggled with new triggers, like the flashing lights of paparazzi cameras.
“I couldn’t deal with the paparazzi. I couldn’t do it because people couldn’t see my migraine attacks and thought there was something off.”
She recounted that she was doing a new show off Broadway called “A New Brain,” the 1998 musical by William Finn about a composer during a medical emergency and the healing power of art.
“Isn’t it ironic that I was in a show called the New Brain and experiencing Chronic Migraine?”
I know exactly what Kristin felt. It can be frustrating to experience migraine attacks that impact everyday life. When I was in high school and college, I would feel frustrated because I would want to do a great job with my coursework and music, but migraine attacks would put me on the sideline. It took me a long time to realize that asking for accommodations was something that I needed to do in order to succeed. Flexible deadlines enabled me to feel empowered to discuss my disease and also not push myself unnecessarily. It’s not a weakness, but a strength to know what you need.
I asked Kristin about how she handles the unpredictability of migraine attacks when she’s on set or performing, as she recently finished shooting the second season of Schmigadoon. Like myself, light is a big trigger for Kristin. When she’s not performing, she stays in darker rooms to control her environment.
With friends like co-star Alan Cumming, who is one of her best friends and shares many scenes in this upcoming season, this is not a new conversation. Whenever she is on a set, a Broadway show, or even a concert with a crew, orchestra, band or accompanist, she tells them that she has Chronic Migraine and explains what will happen when she experiences a migraine attack. She said, “There’s so much freedom in telling people don’t panic, I know what I gotta do. It may not work, but this is what’s happening.”
Knowing that a superstar like Kristin is also having these conversations in her career is very empowering. These conversations can be nerve-wracking because you don’t how the other person will react. I know from my own experience that when I’ve explained to colleagues, teachers or employers, they may not fully understand because Chronic Migraine is an invisible illness. For example, if I am giving a presentation but am having trouble speaking, I tell them I’m having word-finding issues. Sometimes, I need to discuss an extended deadline because of a bad or long migraine attack that hinders my ability to function. It is not always easy or comfortable to talk about how your migraine attacks affect you to others, but Kristin had an impactful quote about what she says in these situations.
Don’t Confuse my chronic migraine with a weakness. It’s just something i have to deal with
Chronic Migraine Treatment
Over the years, Kristin has worked closely with her doctor to manage her Chronic Migraine with a treatment plan that includes BOTOX® every 12 weeks. Kristin recounted, “I tried so many therapies but wasn’t meeting my treatment goals. I was able to talk to my doctor and she finally said, “I’m gonna give you BOTOX®.” For transparency, I also use BOTOX® for Chronic Migraine as part of my own treatment plan.
BOTOX® is a prescription medication that is injected by your doctor. Two rounds of treatment is needed to feel full effects at 24 weeks. It is important you work with your doctor to determine what treatment plan is right for you. BOTOX® prevents, on average, 8 to 9 headache days and migraine/probable migraine days a month (vs 6 to 7 for placebo).
There are serious side effects that can occur with BOTOX®, such as difficulty swallowing, speaking, breathing, eye problems, and muscle weakness, so it’s important to talk to a doctor about the Important Safety Information. You can find additional BOTOX® safety information, including Boxed Warning, below and at www.CenterStagewithCM.com. Please also see the full Product Information and Medication Guide.
Want to discuss preventative Chronic Migraine treatment options with your doctor but don’t know where to start? Begin by starting a migraine tracker, where you track how many headache and migraine days you have per month and possible triggers. When you meet with your doctor, you can ask if the use of a preventative medication could help reduce the number of monthly headache and migraine days if you have Chronic Migraine and experience 15 or more attacks per month.
BOTOX® (onabotulinumtoxinA) Important Information
INDICATION
BOTOX® (onabotulinumtoxinA) is a prescription medicine that is injected into muscles and used to prevent headaches in adults with chronic migraine who have 15 or more days each month with headache lasting 4 or more hours each day in people 18 years and older.
It is not known whether BOTOX® is safe and effective to prevent headaches in patients with migraine who have 14 or fewer headache days each month (episodic migraine).
IMPORTANT SAFETY INFORMATION
BOTOX® may cause serious side effects that can be life threatening. Get medical help right away if you have any of these problems any time (hours to weeks) after injection of BOTOX®:
Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are preexisting before injection. Swallowing problems may last for several months.
Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms, including loss of strength and all-over muscle weakness; double vision; blurred vision; drooping eyelids; hoarseness or change or loss of voice; trouble saying words clearly; loss of bladder control; trouble breathing; and trouble swallowing.
There has not been a confirmed serious case of spread of toxin effect away from the injection site when BOTOX® has been used at the recommended dose to treat chronic migraine.
BOTOX® may cause loss of strength or general muscle weakness, vision problems, or dizziness within hours to weeks of receiving BOTOX®. If this happens, do not drive a car, operate machinery, or do other dangerous activities.
Do not receive BOTOX® if you are allergic to any of the ingredients in BOTOX® (see Medication Guide for ingredients); had an allergic reaction to any other botulinum toxin product such as Myobloc® (rimabotulinumtoxinB), Dysport® (abobotulinumtoxinA), or Xeomin® (incobotulinumtoxinA); have a skin infection at the planned injection site.
The dose of BOTOX® is not the same as, or comparable to, another botulinum toxin product.
Serious and/or immediate allergic reactions have been reported, including itching; rash; red, itchy welts; wheezing; asthma symptoms; dizziness; or feeling faint. Get medical help right away if you experience symptoms; further injection of BOTOX® should be discontinued.
Tell your doctor about all your muscle or nerve conditions, such as ALS or Lou Gehrig’s disease, myasthenia gravis, or Lambert-Eaton syndrome, as you may be at increased risk of serious side effects, including difficulty swallowing and difficulty breathing from typical doses of BOTOX®.
Tell your doctor about all your medical conditions, including if you have or have had bleeding problems; have plans to have surgery; had surgery on your face; have weakness of forehead muscles, trouble raising your eyebrows, drooping eyelids, and any other abnormal facial change; are pregnant or plan to become pregnant (it is not known if BOTOX® can harm your unborn baby); are breastfeeding or plan to (it is not known if BOTOX® passes into breast milk).
Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Using BOTOX® with certain other medicines may cause serious side effects. Do not start any new medicines until you have told your doctor that you have received BOTOX® in the past.
Tell your doctor if you received any other botulinum toxin product in the last 4 months; have received injections of botulinum toxin such as Myobloc®, Dysport®, or Xeomin® in the past (tell your doctor exactly which product you received); have recently received an antibiotic by injection; take muscle relaxants; take an allergy or cold medicine; take a sleep medicine; take aspirin-like products or blood thinners.
Other side effects of BOTOX® include dry mouth; discomfort or pain at the injection site; tiredness; headache; neck pain; eye problems such as double vision, blurred vision, decreased eyesight, drooping eyelids, swelling of your eyelids, and dry eyes; drooping eyebrows; and upper respiratory tract infection.
For more information, refer to the Medication Guide or talk with your doctor.
You are encouraged to report negative side effects of prescription drugs to the FDA.
Visit www.fda.gov/medwatch or call 1-800-FDA-1088.
Please see BOTOX® full Product Information, including Boxed Warning and Medication Guide, at https://www.rxabbvie.com/pdf/botox_pi.pdf.
If you are having difficulty paying for your medicine, AbbVie may be able to help.
Visit AbbVie.com/myAbbVieAssist to learn more
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