STRENGTH IN STORIES™
Strong Pursuit for Chronic Pain Relief: Q&A with KC
KC’s Story, February 2025
As told to: Katy Oakley
Diagnosis received: Cluster headache, chronic migraine, sinus headache, tension-type headache, neurodivergence, histamine intolerance, hereditary alpha tryptasemia, attention-deficit/hyperactivity disorder, allergy
Symptoms: Head pain, noise, light, and smell sensitivity, fainting, vomiting, face and ear pressure, droopy eyelid, one-sided head pain, vertigo, hypotension, tachycardia
For 30 years, KC has navigated the complex and often misunderstood world of migraine and headache disorders. What started as debilitating headache attacks in her adolescence, transformed into a lifelong journey of misdiagnoses, trial-and-error treatments, and ultimately, self-advocacy. From grappling with identifying triggers to advocating for herself in medical settings, her story conveys the challenges many encounter while living with misunderstood conditions. Here, KC recounts her experiences with migraine, her evolving treatment path, and the significance of perseverance and persistence in obtaining the appropriate care.
Q: Can you share your history and experience with migraine and headache disorders?
So, my migraines started as young as 15. Now that I know it’s histamine and genetic, it makes so much more sense. In the last year, I was diagnosed neurodivergent. Then more recently, a genetic disorder called hyper alpha tryptasemia or hereditary alpha tryptasemia (HαT) and it’s linked to histamine intolerance. When I was younger, I’d get headaches at random, and I would pass out and throw up. They would just be so terrible.
Then in my 20s, I worked in retail, at a specific store that sold perfume… I couldn’t even tolerate it anymore. I realized that smells specifically, and yellow, fluorescent lighting was really doing a number on me. It was really triggering me to have a lot of headaches. Back then, there weren’t a lot of treatment options, so I feel like I was given a triptan of some sort and it just never did the trick.
I ended up departing that job and then because I wasn’t around the aggressive perfume, I feel like they [my attacks] were a little more in check. In my 20s and 30s, I would mostly get headaches that correlated to allergy symptoms. For a long time, doctors were like, ‘Well, you have sinus pressure. Sinus pressure causes pain. The pain triggers the migraine…’ I really believed that. I thought, ‘Okay, well, this is allergy related.’
Q: What are challenges you faced in identifying and treating your headache disorder over the years?
The biggest battle with dealing with migraine for 30 years is ‘What kind of migraine am I experiencing? How do I treat it?’ I always struggled with identifying exactly what type of migraine I was experiencing. ‘Was it a regular headache? Was it a tension headache? Was this a sinus headache?’ They all felt brutal to me. I now know that neurodivergence amplifies that pain.
For me to not be able to identify it, I had a hard time treating them, and sometimes it was a guessing game. ‘Do I take a decongestant? tylenol?’ For a long time, I didn’t know that those drugs were causing them to be worse. So, it became chronic migraine, and it wasn’t until 7 years ago [or so], that I started having them more than half the days out of the month. That was when I was finally like, ‘I cannot deal with this anymore. There’s got to be solutions.’
I’ve been on aimovig with really really good results and great success for almost 6 years now. I do take abortives, but again, it’s that game of roulette, ‘What kind of headache do I have? How do identify and solve the problem?’ Sometimes it needs benadryl, zomig, or nurtec. They all treat different types of migraine in different ways.
My hurdle is once I take a medication, I can’t put another one in my system… it’s usually a matter of waiting 12 to 24 hours to try again but I’ve gotten a lot better at it… [Previously] I had 10 days in a row of migraine, and I ended up going to urgent care, who were like, ‘We can’t do anything for you. Just go to the emergency room.’ I realized they were cluster migraine, and they were specifically being triggered by food 2 hours after eating those foods… I’ve been good at figuring out my triggers over the last decade, but when I was younger, I just couldn’t identify them… Now that I’ve learned about histamine intolerance, I do a lot better focusing on what foods I should or shouldn’t eat.
Q: Can you share more about what your experience at the emergency room was like?
This was actually the first time I ever went to the ER for migraine… We went to urgent care [first], and they were like, ‘All we can give you is a shot of toradol… [but] the doctor was like, ‘I don’t feel comfortable giving you this’ and it was the only option I had and deferred me to the emergency room. I was purely frustrated at that point… I drove myself to the emergency room closest to my home. Thankfully, the doctor that saw me was really savvy with migraine. He tried a couple things and kind of did stack therapy, like, ‘We’re going to try this first,’ and then he’d check on me… I did end up being given and IV infusions for fluids. They did a shot [injection] of benadryl in my arm, and they gave me another shot [injection]… I think they did end up giving me the toradol, but nothing was stopping it.
I was there for 4 hours, and nothing stopped it. I told him, ‘You know, I tried lot of different things over the years, zomig’s the only thing that aborts these types of migraines for me, even the nurtec does not work for cluster.’ It worked for that night, and then the next morning, it was back. They didn’t have zomig and he ended up giving me another triptan and he said he [could] just either double or quadruple the dose so that it was equivalent to zomig and it did abort them that night. I got a lot of good rest and then it was the next day that I decided okay I’m going to try a low histamine diet myself to see if this alleviates my symptoms and I did end up getting a migraine the next day, but I had gotten a prescription filled.
Q: Can you tell us more about your different types of headache disorders and the differences between them?
I have been able to tell the difference between sinus headache and tension headache, [which] I don’t need to treat with an abortive. If I’m not careful, though, they can trigger migraine. I usually have migraine pain where it hurts my face. I’m not diagnosed, but I believe I have trigeminal neuralgia because the right side of my face tends to be where I get them more.
[I] actually mistook migraines for a number of years as ear infections, because I would feel pressure and fullness on my right ear that felt like my ear was full of snot and that it was a sinus headache turning into a migraine. After seeing a few doctors, they’re like, ‘You’re clear. There’s nothing in there.’ Like ‘Why does my ear hurt so bad [then]?’… I figured out the cluster headache because for years I complained to my ear, nose, and throat specialist about that ear pain and my right eye drooping. I kept telling him, ‘This isn’t what my face looks like.’ I knew something was up and it was very uneven. He goes, ‘No, you’re just aging.’ I was so upset at that!Cluster is a little easier to identify because it tends to only happen on one side of your face. When I’ve got pain on one side of my face with a droopy eye, I know it’s cluster and that needs zomig specifically. I had a neurologist try to tell me that my migraines were caused because of a nerve issue in my neck, and I was like ‘No my neck pain comes on after I get a migraine. My neck doesn’t cause the migraine, it’s a symptom of it.’ That was something that I absolutely couldn’t really place because of the misguidance there years ago…
Q: How did living with migraine impact your ability to attend and function in school as a student?
30 years ago, when I was in high school, I remember not being able to focus. Now that I know ADHD is involved too, the pain was just so distracting, I couldn’t function. Anytime I had a headache, I didn’t want to do anything… Back then, I didn’t know [I had] to drink water, [and] make sure I was hydrated. I didn’t know. [However,] I instinctively knew, get me away from the lights, [get me to] darkness. But noise, there were things I couldn’t escape… That was hard. Catholic school is always like, ‘Oh, you missed too much school,’ I’m like, ‘Well, I can’t do nothing. There’s nothing I can do if I come here like this.’ It just made it really difficult.
Q: You didn’t receive accommodations through Section 504?
Oh no! Not at all. I had a doctor who thought I kept passing out because of the heat in the bathroom and really what it was—the hot water was causing me to histamine dump and it was making my blood pressure drop, my heart rate skyrocket, it would trigger migraine and I [would] pass out. [With] the breathing issues [the doctor] always chalked it up to sports asthma and I’m like ‘No, playing sports was agitating my body and the max cells were just going crazy.’ I wasn’t even diagnosed with migraine for almost another 10 years. I was probably 23-24. Almost 8-9 years then, before somebody would say, ‘Oh, you’re experiencing migraines that are correlated to your allergies. Let’s treat your allergies,’ which did alleviate some of them for a long time and then removing myself from triggers [also helped].
Q: How have loved ones shown their support and how did their actions make a difference in helping you manage your attacks?
I had an accommodating parent, thankfully! My mom always understood because she always dealt with a lot of the same stuff. She dealt with doctors shrugging it off and she had vertigo and around that time I was also starting to develop and experience vertigo… I’m just really lucky to have people who understand. If you don’t experience it, you can tend to downplay it. My mom has dealt with all of the same issues… I was just out of luck because it came from both my mom and dad’s side. She always dealt with migraines and vertigo and health issues. She knew how to navigate it, and she always gave me the best advice… It makes a difference when you’re believed… My best friend is a chronic migraine sufferer and she’s the one who helped guide me to get on aimovig. She referred me to her doctor, and she said, ‘This is the doctor I see, and this is what I take.’
I have a really, really good support system. I’m just very lucky. I know a lot of people out there don’t have any support. They’re not believed. They don’t have options, and it makes it that much worse to go through.
Q: Were there any frustrating experiences when trying to find the right medical care and treatment for your migraine disease?
I saw 3 different neurologists who all didn’t get it right. One of them actually put me in the hospital because they gave me a double dose of zomig they upped the dose and put me on something else, I ended up with serotonin syndrome… You get to a point where you’re exhausted, [facing] complete medical fatigue. I was like, ‘I don’t trust you now, and I don’t want to see anyone else.’ I remember crying and calling my best friend, and I said, ‘What do I do? I’m so tired.’ She said, ‘Here’s my doctor. This is what I take.’… Overall, she’s helped me with all of this, where a lot of specialists have failed me. I haven’t found a neurologist yet that understands all the different kinds and what triggers them and how food has something to do with it. I can’t tell you how many doctors are like, ‘Oh, it doesn’t matter what you eat.’ I’m like, ‘That is not accurate at all.’
Q: What strategies have you found helpful in advocating for yourself, especially when dealing with medical fatigue and frustration?
For me, journaling helped a lot because it helped me get the thoughts out and process them a little differently, but it also helps me go in [to appointments] with what I need to say… I have found [that] journaling what I’m experiencing when and what happened around that, was really helpful. A lot of times when you start to try to pinpoint food and how that is correlated to your triggers, whether it is smells, lights, something you experienced, stress, it has helped [me] kind of map it all out. I found that when I go into doctor’s appointments with notes written, they take me more seriously.
Don’t be scared to start over. I can’t tell you how many times I’ve seen a doctor, and I’m like, ‘I do not agree with what you’re telling me, with the treatment you’re suggesting because I don’t feel like it works for the other health issues I have going on.’ You do get that medical fatigue, and it’s like, I’m so tired, I don’t want to see another doctor…
I’ve been lucky enough that when I experienced that fatigue, I do have people that help me. My neighbor has offered to come over and make the calls for me, and my mom will help me with billing stuff. Having that support when your brain just cannot do the thing is a huge difference and having people who can step up and help you get through these processes because they’re daunting.
Q: How does migraine impact your mental health and social life?
It causes depression when you can’t go do the things you’re so used to doing, or something you plan to do. It can be devastating, especially with the neurodivergence aspect of it. You’re excited and you’re ready to go do the thing, and then all of a sudden, it’s taken from you. My emotions towards those instances can be a little more intense than a regular person… That causes so much disappointment. I’ve had to leave weddings, parties, concerts. I don’t even attend those kinds of things anymore and it causes you to feel like you’ve lost a big thing or you’re missing out.
I’ve been doing particularly well with the mental health aspect because my support system gets it. We make plans, I break plans, we reschedule the plans, and everybody involved is on the same page, but when you don’t have that, that depression can be much worse. You can lose friendships because maybe that person doesn’t understand [why] you bail all the time.
Some people start to view the repetition of breaking plans as either a personal dig or they just get annoyed with it… The other hard part of it is when you’re experiencing depression or the anxiety that having a chronic illness and having chronic migraine can have, it can become very cyclical. Depression and anxiety symptoms can exacerbate pain. It can cause stress and then it can become a trigger. It’s like a weird balancing act of I have to keep both on track because one causes the other…
