Kristin Chenoweth “owns” every stage she stands on. And behind the scenes, she also proactively manages her health and advocates for herself, before she ever takes a step into the spotlight.
But self-advocacy doesn’t come as easily for everyone. So during the afternoon of May 15, 2024, Kristin took to the Women’s Health Health Lab stage to help empower participants to own their healthcare journey and push past health disparities to advocate for themselves. Here’s more from the conversation.
Kristin’s Chronic Migraine Journey
For most of her adult life, Kristin has been living with chronic migraine. “I had my first migraine attack at just 25 years old, in the middle of my performance with an orchestra,” she said. “At first I thought, Something must be wrong with the spotlight. I started getting what I now call ‘kaleidoscope eyes’—meaning I see 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 way up. I muscled through until intermission, at which point I fell to my knees and vomited.
“My head was pounding. I spent the whole intermission worrying about how I would get through the final 45 minutes of the concert. Somehow found it in myself to perform, and as soon as the curtain dropped, I collapsed. I didn’t know where to go from there. I was confused, worried, and scared this would end my career.”
Why Aren’t We Comfortable Owning Our Health?
Kristin’s experience isn’t unusual, including her confusion and fear about what’s next. Research has shown that women’s pain is often taken less seriously than men’s or underestimated, and that women may experience delays in care compared to men.
Hope O’Brien, MD, a neurologist and headache specialist in Cincinnati has witnessed some of these disparities in her own practice. “Each day, I see and treat patients with a variety of neurological diseases, including chronic migraine. As you can imagine, many neurological diseases are complex and associated with a variety of symptoms that are not always easy to diagnose or treat,” she told the WH Health Lab audience. “For many of my patients, I am not the first doctor they have seen to discuss their symptoms. And outside of the doctor’s office, many women also experience feeling like a burden to their loved ones when they are not feeling their best.”
This is especially true with migraine, which impacts three times as many women as men. But women shouldn’t doubt themselves when they are experiencing something out of the ordinary, Dr. O’Brien said: “In my experience, many women consider having a headache to be normal, so it may be easy to write off a headache, or a random bout of nausea, or even needing to wear sunglasses on a cloudy day—all of these things can affect how long women might wait to seek care. But only you know your body and if something more serious might be going on.”
She added that she always encourages her patients to feel empowered and not to let others’ dismissals or misunderstandings of what they’re experiencing stop them from seeking help and advocating for what they need.
Take Control of Your Health
Both Dr. O’Brien and Kristin offered tips about ways to talk to your doctor about what you are experiencing. Here are their suggestions:
Reflect about the impact of symptoms on your daily lives.
For example, did you have to miss work, an important event, or a family celebration because you weren’t feeling well? Did you have to lie down and rest instead of walking your dog? “It’s important to share these types of real-life examples with your doctor, so that they can understand how your disease is affecting you in your daily life, and also assess the proper treatment path,” said Dr. O’Brien.
“As a performer, I always feel a sense of pressure to look and feel my best every day,” Kristin said. “I never want to let down my co-stars or disappoint audiences because I don’t feel well. But in the past, this has led me to push through performances at times where my body truly needed the rest. When I started to realize how chronic migraine was impacting me, I knew I needed to be more vocal with my neurologist about my treatment goals.”
Realize it’s more than a headache.
Chronic migraine is more than just a headache—it’s a debilitating, complex neurological disease that impacts more than 4 million Americans. Common symptoms include: severe, throbbing headache; extreme sensitivity to light and sound; and nausea and vomiting, occurring on 15 or more headache days per month, each episode lasting four or more hours.
“Once I provide a chronic migraine diagnosis, a patient’s first reaction is actually relief, to have an explanation for the symptoms that they’ve been enduring,” Dr. O’Brien said. “Especially because they’ve spent many years not being taken seriously by friends, family members—even other healthcare professionals. This is part of why it’s so critical for patients to continue speaking up about symptoms, because if they don’t speak up, they may not get the right diagnosis and find a treatment option that works for them.”
Educate others about chronic migraine.
Chronic migraine is a disease that can’t always be seen, but is always there. “I think that’s one of the biggest struggles for me—educating people that this is more than just a headache; it’s serious,” Kristin said. “There have been people in my life who just get it and some who don’t. I remember being in the dressing room before a show with the lights off and a towel over my head. My dressing-room partner immediately recognized that I had chronic migraine because I was in the same exact position as her mother, who would frequently get migraine attacks. She did everything possible to make me feel comfortable. Meanwhile, my director at the time just kept saying, ‘You’ll figure it out,’ and did not truly understand what I was going through.”
Over the years, Kristin has learned how powerful it is to be open about her disease. “Because if I, and the millions of others who live with chronic migraine, don’t talk about our experiences, we won’t be able to learn from each other how to navigate this journey and what treatment options might be available to us,” she said. “My personal journey has helped me see how important it is to stand up for myself, both on and off the stage. And, perhaps most importantly, it’s taught me how to have open and honest conversations with my healthcare professionals about what I’m going through, so that together we can find a treatment option that works for me.”
Find Your Own Way
Because Kristin knows how debilitating chronic migraine can be, she now shares her story with others, with the hope it can help even just one person. And she looks forward to bringing others’ stories to life as well. “I’m so excited to share with you another little project I’ve been working on lately,” she announced to the crowd at the event. “To help drive further awareness of this disease, I’m serving as guest editor of the Center Stage With Chronic Migraine online magazine, in partnership with AbbVie.”
This magazine spotlights four people’s stories, from diagnosis to finding a treatment plan that works for them. And while she was getting to know the four patients on the project, Kristin found that their treatment journeys were quite similar to her own. “They all receive BOTOX® as a preventive treatment for their chronic migraine, which is an important part of my treatment plan as well,” she said.
BOTOX® (onabotulinumtoxinA) is a prescription medicine that is injected by a healthcare professional to prevent headaches in adults with chronic migraine, 15 or more headache days a month, each lasting four or more hours. It is not approved for 14 or fewer headache days a month. 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. The most common side effects of BOTOX for Chronic Migraine are neck pain and headache, and these are not all the possible side effects. So it’s important that patients talk to their healthcare professional to see if BOTOX is right for them and to review the full Prescribing Information, including Boxed Warning and Medication Guide, at BOTOXChronicMigraine.com. Please see additional Important Safety Information, including Boxed Warning, below.
“BOTOX is an important part of my treatment plan, but it’s not all I do to manage my chronic migraine,” Kristin said. “I’ve also learned my triggers, like stress, flying, working too many hours, and diet, and how I can manage them—as much as possible, of course. Bright lights can also be a trigger, so it may look funny, but I wear sunglasses everywhere. Additionally, I avoid alcohol and eat a low-salt diet.”
The takeaway from the afternoon: Talk to your doctor if you are experiencing any symptoms that are affecting your life.
For inspiration, check out CenterStageWithCM.com.
BOTOX® (onabotulinumtoxinA) Important Safety 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 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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