How TikTok's 'Migraine Babe' is educating others about the debilitating disorder: 'There's been such a stigma'

How TikTok’s ‘Migraine Babe’ is educating others about the debilitating disorder: ‘There’s been such a stigma’

Cannon Tekstar Hodge has been dealing with migraine since she was a child. (Photo: Cannon Telstar via Instagram)

Migraine is one of the most misunderstood neurological disorders, commonly lumped together with traditional headaches — a harmful generalization that oversimplifies how debilitating migraine attacks can be.

“When I was in my early 20s, the idea of the life that I was going to have for me was very different than it is today,” TikTok’s resident “Migraine Babe,” Cannon Tekstar Hodge, tells Yahoo Life. Hodge has been dealing with the life-altering effects of migraine since she was a child.

“I think what a lot of people miss when it comes to migraine is that migraine, for the most part, is a genetic neurological disease,” Hodge, who says she inherited migraine from both of her parents, points out.

Hodge has chronic hemiplegic and vestibular migraine, which can cause debilitating unilateral weakness and intense spells of vertigo, respectively.

“My first migraine attack, I was a child at Disneyland,” says Hodge. “I probably was around seven years old.” At the time, she didn’t understand what was causing the pain.

“After a long day at the park, everything was too bright and my head really hurt. … I didn’t understand what was going on at the time, and I don’t think either of my parents really understood it either, because I was a pretty chronically ill kid, with ear, nose and throat problems,” she says.

Mixing up sinus issues and migraine would be a recurring theme in Hodge’s journey toward securing an accurate diagnosis.

“In my early twenties, I started developing what I thought was chronic sinusitis, and I would go to my general practitioner and say that I was having a lot of sinus pain,” she says. “And because I had such a history of ear, nose and throat problems, he would just thump on my sinuses and I would react by, you know, going back, and he’d go, ‘Oh, it’s a sinus infection,’ and I was on antibiotics a lot.”

Hodge later learned about sinus migraine, which she dealt with through most of her 20s without the appropriate treatment.

“Overall, I did not treat the chronic migraine, and because of that, it progressed,” she says.

While on a family trip in her early 30s, Hodge “woke up dizzy, and I couldn’t really explain why,” she says, adding: “I was on holiday with my family in the Caribbean, and I was absolutely miserable the entire time [because] I was so dizzy.”

The spells of dizziness were so intense and disorienting that Hodge likens them to the feeling of being on an amusement park ride.

“You feel kind of like your head is disconnected from your body,” she explains. “You’re dizzy all the time, and then you have bouts of vertigo, and it’s really bad, room-spinning vertigo — that feeling of being on the tilt-a whirl is exactly how I felt back in the day.”

Soon after her trip to the Caribbean with her family, Hodge was officially diagnosed with severe migraine. But she was skeptical at first, because of her own misconceptions surrounding migraine.

“I didn’t really believe [the doctor] because I was under this assumption that migraine had to do with really horrible head pain and you couldn’t be out in the light,” she says.

Hodge later gained a greater understanding of the neurological disease, and now uses her own platform to advocate and inform others about migraine.

“I’ve been working in social media since 2009, so I’m very used to this space,” she says. “But I’m more of a behind-the scenes person and especially when it came to TikTok, I’m not usually the sort of person who wants to put my face out there.” But there was something about the lack of reliable information about migraine on the app that compelled Hodge to leap into action.

“Because of how TikTok’s algorithm works, it [can reward] those people who are spreading misinformation, so I was seeing people who are not medical doctors posing as medical doctors saying that they could treat migraine, when really they were just creating meme-worthy pieces of content,” she says.

Hodge says seeing that “really frustrated me because there’s been such a stigma about migraine and we can’t even get most of society to recognize that migraine is a neurological disease. So to see people being rewarded on a social platform for that was really disappointing.”

So Hodge started making her own videos, which she admits was difficult at first. “It was really awkward because I have aphasia, which means you have difficulty coming up with words. You mix up words, and it’s difficult to put sentences together,” she says. “And at the time, my aphasia was quite bad.”

But she never let that stop her from posting. In fact, Hodge filmed herself during an active migraine attack, and that vulnerability helped foster a sense of community on the app.

“There was one day when I had a bad migraine attack and I recorded it because there were a few other people who had hemiplegic migraine and we all followed each other, and [one] was too nervous to share what her symptoms were like, but she had shared it,” says Hodge. “So I kind of was doing it in solidarity, because quite often, we are ridiculed and made fun of for our symptoms.”

Today, Migraine Babe has built a community of over 30,000 followers on TikTok and has been able to use her platform to share helpful resources and information. Hodge admits that her life at 40 doesn’t look the way she imagined it would be in her early 20s.

“I probably envisioned myself being married and having children,” she says, “and now I know that children are not in my future, because going off of my migraine meds would be too detrimental.” (It’s important to note that some prescription migraine medications, such as triptans, are considered relatively safe in pregnancy. So if you experience migraine attacks and are planning on starting on a family, you should have a conversation with your doctor.)

Hodge, for her part, is focused on encouraging others with migraine to live their best life, even if it looks different from what they may have imagined.

“There still is a life that can be worth living, even though it’s so radically different than the life you had originally wanted to achieve,” she says.

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