She had pigtails, an adorable smile and a square at the bottom left of The Brady Bunch family grid. But even then, in the early 1970s, Susan Olsen (“Cindy Brady”) was living with nauseating let-down migraines. Still, the young actress didn’t let that stop her. After acting in 117 episodes of the iconic show, Olsen went on to work as a graphic artist, painter, radio show host and advocate for animal welfare. But it was her work as a migraine advocate that Olsen, now 51, identifies as good karma.
From 1998 to 2000, Olsen served as a migraine spokesperson for “Take Charge: Follow the steps to a Treatment Program that Defends Your Lifestyle,” a campaign sponsored by Glaxosmithkline (called GlaxoWellcome at the time). By speaking about migraine disease over the years and encouraging migraineurs to take charge of their health, Olsen has helped raise awareness about the disease and empathy for those who were hiding their pain. Olsen recently spoke with Head Wise about her experiences with migraine and how television catchphrases may have contributed to the stigma surrounding the condition.
Head Wise (HW): When was your first migraine?
Olsen: I experienced my first migraine when I was 11. I was at a wrap party at the end of the fourth season of The Brady Bunch. I felt ill and wanted to leave the party early. I thought I had the flu and complained that my head was pounding, and I was really nauseated and was vomiting. My mother said, “Oh, sweetie, I’m so concerned.” I’m like, “Do I have a disease?” And she said, “I think, from your symptoms, you’re having a migraine. I think you’re getting what your daddy gets.” Sure enough, I didn’t have the flu. Back then my migraines didn’t last long, and I was fine by morning.
My mother took me to the pediatrician, and I remember very clearly him kissing me on my forehead and saying, “Oh, honey you’re just too conscientious.”
HW: Did your migraines change over the years?
Olsen: As most people with headaches experience, your relationship with your disorder evolves. When I became a teenager, the migraines increased because of hormones. And then in my early- to mid-20s, they got really bad—to the point where it was pretty much every weekend that I was experiencing let-down headaches. Rather than missing work or missing something important, my stress would carry me through and then the minute the job was over, I’d miss every wrap party because the headache would begin.
What made everything very concerning was in my late 20s, I began to get hemiplegic migraine, which involves a very unusual form of aura in which the symptoms emulate a stroke. That was really scary, so I got more involved with trying to determine what the heck was going on with my head. Today, things have gotten much better. I don’t have near the amount of problems I used to have. I couldn’t be any happier or feel more grateful and blessed. It’s like the migraine fairy came along and said, “Well, you’ve suffered enough.”
HW: You’ve worn a lot of hats over the years. How have you managed your work-life balance to prevent migraines?
Olsen: As much as my pediatrician meant it as a compliment when he said I’m too conscientious, I’ve learned to be less conscientious. I’ve learned to care a lot less; I don’t stress. I make a very clear distinction between what is my fault or responsibility. Everything else can just go bye-bye.
HW: How do you treat your migraines?
Olsen: I was helped by traditional triptans like Imitrex® (sumatriptan); that was useful for typical migraines. When I get hemiplegic migraines, that’s not an indication for using that drug. Now I’m on aspirin therapy, and I stay pretty laid back. If I got anymore laid back, I’d probably flip into a coma.
HW: What made you want to be a migraine advocate? Was it about bringing legitimacy to the disease?
Olsen: Absolutely, I would say that was the number one reason. For years my first husband would talk about that first hemiplegic migraine that I had, and he’d joke about it: “Oh yeah, back when Susan had her ‘stroke.’” It was a joke, like I was a hypochondriac who overreacted. I knew all too well how it can affect your self-esteem, and I think that was the reason I jumped on the bandwagon.
HW: You appeared on Larry King Live with NHF’s founder, Seymour Diamond, MD, in 2005. Why do you think migraine was given that forum on national television?
Olsen: Actually that was the second time I’d been on Larry King talking about migraine. I think part of the reason is that Larry’s wife suffered from migraine and, as a matter of fact, she began to have one during the panel. So when we were done shooting she had to go lie down. I’m sure it was the personal effect migraine had on his life and her life that urged them to explore it more.
HW: You mentioned your husband didn’t believe you were having a migraine. Why do you think migraine is stigmatized by society?
Olsen: I grew up with shows like Bewitched and Darrin’s mother Phyllis would yell, “Frank, I’m getting one of my sick headaches!” It became a catchphrase for someone who is a complainer and a whiner. We began to identify headaches with being a whiney person.
When somebody gets a lot of headaches, after a while people just don’t believe you anymore. Because I was getting mine on weekends, people stopped inviting me to things. It was like, “She’s always got a headache. We get it Susan. You don’t like us anymore.” And I said, “You don’t get it. I really do have headaches.” The best thing you can do is try to educate people that if you or your friend is having a headache, something is really wrong. Have compassion!
HW: What do you want migraine awareness to achieve in the next 10 years?
Olsen: There are far more vehicles for getting information out there, and I think awareness is improving. When I was a child, it was nowhere near as understood as it is now. Today people say, “I work with somebody who has that” or “That must be terrible.”
The message needs to get out there that this disorder usually hits people who do care a lot, who do put a little more effort into things, and because of that, rather than being looked down upon for the disorder, maybe they should be admired. This is part of the price they pay for being so cool.
HW: What would you want to say to the person who is sitting at home right now with a migraine?
Olsen: Well, we would have to whisper it because sounds hurt so bad!
I would say the same thing I said when I was an advocate: Take charge. Don’t put it off. I used to sit there in horrible pain. And then once it was over, it’s like having a baby: You forget about it and say, “I’m fine now, I don’t want to take the time to go to the doctor.” No. Do it. Force yourself. Make a promise to yourself when you’re throbbing in pain that you’ll go to the doctor. You never know what new treatment might be available that could help.
Know Your Headache: Hemiplegic Migraine
The hemiplegic migraines that Susan Olsen experiences are among the rarest forms of migraine. Hemiplegic migraine is characterized by a migraine headache associated with weakness on one side of the body; these symptoms may last for days. The migraineur may also experience a disturbance in speech and various visual problems.
Headache specialists generally recommend preventive agents. As Olsen mentions in her interview, triptans are avoided for hemiplegic migraine because of a potential risk for narrowing of the blood vessels.
Headache specialists may also do a blood test to determine whether the migraineur has three genes associated with hemiplegic migraine. The test would tell the physician whether the patient has familial hemiplegic migraine, associated with a genetic component, or sporadic hemiplegic migraine, associated with a gene defect. the results would not change the method of treatment. However, “if the test came back positive, then the migraineur would know that he or she is at risk for many more migraines and potentially at risk for passing the gene onto his or her offspring,” says A. David Rothner, MD, director of the Pediatric/Adolescent Headache Clinic, chairman emeritus of Child Neurology at the Cleveland Clinic Foundation in Cleveland, and a member of the Head Wise editorial board.
The National Headache Foundation (NHF) supports the Libby Fund, which was created by Libby Kandel (a 16-year-old with hemiplegic migraine) to increase public awareness and funding for research into causes and cures for hemiplegic migraine. To learn more about the Libby Fund and donate to the cause, visit www.headaches.org/content/libby-fund.