Jeopardy Contestant Discusses Living with Vestibular Migraine
In this interview, a Jeopardy contestant discusses living with vestibular migraine, competing on the game show, and advocacy. Below, are the interview questions and answers from Nicky with their experiences.
Can you give me a bit of background on your life with migraine?
I had 24/7 dizziness since 2011, and I had a horrible dizziness attack in 2013 from Chicago pizza. I was assaulted in 2013 by getting hit on the head from a house break-in. My head pain was worse after that, and I developed worse fatigue, tinnitus, and phantom smells years after that as well. My dizziness remains today as well as my head pain.
I said chronic dizziness with migraine on the show as I know more people who haven’t yet been diagnosed with vestibular migraine or have other conditions that could relate with that more specific detailing. I also have head pain with vertigo.
Why did you apply for Jeopardy?
A friend said you can take the test online so I did and passed it. I then passed the next test where they watch you take the test and then I passed the audition where they have you play the game and make sure that you can answer questions on camera. With my dizziness, it’s very difficult to watch Jeopardy because it moves the camera in and out in terms of focus and jumps around a lot.
I was 1000% concerned that migraine would make it extremely difficult to win. I read every single blog and Reddit post, and any other forum where people talked about their experience on the show. I have never found someone who had had vertigo or dizziness and been on the show. When I told the producers, they confirmed that. I only found one other person who has migraine and has been on the show but they, if I recall, took an abortive to make sure they did not have an attack while on the show.
How did you prepare?
I put bright lights all throughout my living room where I practiced. I put a bike light facing my eyes and put a fan next to it so that I could experience what it was like with lights flashing. Then, I took the lampshade off my lamp and had that at full brightness. I wore the dress clothes that I would have to wear that would make me overheat which is a huge migraine trigger. I didn’t have water nearby because I knew I wouldn’t be able to drink water during the show which is also a huge migraine trigger.
From reading up about the show and listening to a book about strategy by a former Jeopardy super champion, I knew that the screen was about 40 feet away and about the size of a computer monitor. It would be very difficult for me to read that is also a migraine trigger. There are a lot of flashing lights, moving cameras, and bright lights that are also migraine triggers.
I thought they would give me a month’s notice if I got on the show because that’s what they told me, but they gave me a little under two weeks. I told myself I would study everything.
I realized it was very boring, depressing, dizzying, and very difficult. The way I was able to motivate myself was to give away any money I won to people that had this condition. Many can’t afford the care that they need because most of the care we need isn’t covered by insurance.
On the Jeopardy archive website, you can also look up and see which terms have ever been mentioned in the hundreds of thousands of clues that have been on the show. If I recall, dizziness has never been mentioned, and vertigo has only been mentioned in the sense of the Alford Hitchcock movie. It’s amazing that migraine and dizziness, are two of the main reasons why people miss work and why they go to urgent care or the ER and these terms are never mentioned in the media at all. More often than not doctors say it’s in our head, think we’re seeking medicine, that it’s just anxiety or that we are complainers. I know it is very isolating and annoying for partners, family members, and friends as we seem “normal.”
What was your experience like on the show?
I had constant vertigo and migraine attack throughout the show even though I looked “normal” according to others. It went by so quickly and was extraordinarily dizzying. They told me before I went on to let them know if I thought I would seizure or faint which I don’t believe I have ever done. It was definitely very difficult to read anything, hear well, or be present because of my dizziness. The world is chaos where everything feels like it is moving and out of focus.
How did you feel as a Jeopardy contestant?
I drank some caffeine before I went on which is a big migraine trigger. I couldn’t sleep the night before. All of the analysis on the show says drinking caffeine will help you with the buzzer, which I confirmed in my practice research. I also brought my memory foam mat which helped with my back pain. I have integrative balance disorder where my migraine and vertigo/dizziness feed off my chronic spinal pain that feeds off my anxiety, stress, and other mental health issues like depression.
Before the show, I also had some ginger candies to help with my nausea and some vitamin B complex chews to give me furtherer energy since I have fatigue throughout the day.
I couldn’t sleep the night before and didn’t want to risk taking a Benadryl. I wish I would have been able to buzz in more because a lot of what I studied I had answers for. But it’s all about buzzer speed which is not that great for someone with a tumor on their buzzer thumb and medical-induced hand tremors from migraine medication side effects from med trials. That combined with the dizziness, the head, and body pain and not being able to read the clues basically made it impossible. I wish I didn’t go up against the super champion but that’s life and I’m glad she’s crushing it.
During and after the Show
I felt horribly dizzy with head pain. I felt like I blacked out through most of it but felt like I didn’t embarrass myself which is good.
Why did you decide to donate your winnings to migraine research and who will it be going to?
I knew I likely didn’t have a chance to win. That was especially apparent when I got there, and they revealed that I was going up against one of the top jeopardy winners of all time. So the way the show works is if you can’t buzz in you don’t get to answer the question so it goes to the person with the quickest buzzer. I knew 95% of the questions and my strategy was not to buzz unless I was entirely sure and ready. Because the super champion was so quick, I had to abandon my strategy which was fine. I got to do the main thing which is talk about dizziness on the show.
The super champion revealed their knowledge of the condition and was very kind as well as the host and the producers. Although, I did tell people working there that I get migraine attacks from perfumes and they caked my face and hair in perfumed products. When I told them that that makes my dizziness worse and migraine, they said oh yeah that does affect people I’ve heard. I also told them about my back pain, and they made me carry my stuff up and down the stairs and everywhere (turns out they made me bring dress shoes and three sets of pants even though the wardrobe said once I arrived that that didn’t matter) and avoided elevators. One just gets tired of having to advocate for themselves endlessly so I didn’t expect a capitalist game show to not be ablest since it’s literally about ratings and whoever wins the most money gets the most press.
On the show, they kept mentioning that I would donate to an organization. I, on and off, post on the vestibular migraine forum mvertigo.org which is an amazing resource. And I also promote love your brain which is an organization for people who have had traumatic brain injuries and their caregivers.
Instead, I would like to post on forums where people have vestibular migraine and say hey here’s how much funds I have available. Please let me know if you need funds for treatments that you are unable to afford or that insurance won’t cover and I can connect you to the needed funds. I didn’t win $1 million so I can’t do much but I hope more people will continue to match my amount of winnings as Jeopardy champions, contestants, and people have offered to match.
Who reached out to you from your appearance on the show?
This has been the best part. Being able to speak about my condition on the show, I’m hearing from folks feeling isolated and like they never hear their condition spoken about. Especially young people who feel like they’re alone with this.
Why do you think so many people reached out?
I’ve had so many people reach out with resources that have helped. I think that’s what the chronically ill community does: we know what it’s like to deal with this and want to help others as we can. I am constantly getting messages.
People from Nepal, Poland, India, all throughout the US, of all different ages, and backgrounds are saying that when I mentioned my condition on Jeopardy that it was the first time they’ve ever heard someone mention chronic dizziness or vestibular migraine. That says they feel so alone with this condition, that they’re the only person that they know that has it and that they just don’t have anyone to talk to about it. Their doctor doesn’t know about it or believe them so just talking with them and being able to share resources is so wonderful.
What stigma issues did you face while working with the Jeopardy team?
They didn’t get accommodations. I told them constantly I had a spinal condition, and they constantly walked me up and down flights of stairs carrying all my things which turns out I didn’t need half of. From the makeup and hairspray being perfumed to a lack of understanding of the need for water and snacks, it’s basically set up for a migraine attack. But that’s game shows.
Why do you think more people do not advocate?
People are so often fired and punished for showing their true selves and there’s a lack of understanding, especially around how disabling chronic illness like migraine and dizziness is. Our system is built around private pay and insurance and so workplaces and schools are punished by extra cost for every extra health expense from an employee or student. People can get fired for any reason and they don’t have to say it’s for disability but we know. It’s so hard for us to find positions that fit our disabilities and often people feel it’s not worth the risk to speak.
Your expression on the show is an act of advocacy – what was that like?
It made it worth it in some way as it definitely put a strain on myself and my relationships. I can’t complain as I’m able to manage my condition since I’ve known it for so long
Have you advocated in other situations or plan to do more?
I began organizing for social justice when I was a kid, and my vestibular migraine sidelined me. So this has really been my way to advocate again, especially given how little it is spoken in public.
What advice do you have for someone who is afraid to advocate for fear of backlash?
I feel you. It’s smart to think through the possible consequences of speaking out. However, often we have cognitive distortions. We assume the worst when often so much good can come out of it. It helps to have those in your life, like your boss or anyone else, know the condition you deal with. I was concerned I would say something embarrassing or that it would get lost. I was shocked by how many people reached out saying how much it helped them to hear about their condition on tv and to be able to connect.
Try to advocate on a smaller scale with those you’re maybe more comfortable advocating to. No one’s perfect. We don’t speak or write perfectly especially those dealing with sharp blinding headaches or the room spinning. But try with those who may be kinder, and patient, and get their feedback. Try not to take it personally. You can build up and speak at support groups or with those who are more empathetic like caregiver support groups or organizations that are already organized around these areas. Build on those advocacies. You’re not alone no matter how unique your condition feels. I know my fellow chronically ill and pained people know what I’m dealing with, and advocating with them is a beautiful, powerful experience and can be energizing.
Any other thoughts you would like to share?
99.5% of people who apply for the show don’t get on so at least I’m a part of the super nerds who have been on.
What I would want to say to people with this condition is I know it’s horrible. I tell people to imagine being spun around 100 times and then have that happen to you every second and then have to exist in life. Feeling nauseous, tired, dizzy, and chaotic all while having to exist, be functional, and look completely ‘normal.’
The world is infinitely beautiful in infinite ways (for example I can see so many beautiful patterns and shapes in our world). Our consciousness is infinitely large in infinite ways and it may seem like there’s nothing going on other than this horrible state that we feel like we’re in. But we are not in our condition. It is not as constant as it feels even though it does feel constant. There are always new medical discoveries coming out so be patient and keep trying different methods. Don’t be hard on yourself because we deal with a world that doesn’t have patience for this condition. There are lots of us out there and we’re getting stronger in the community.
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