What’s your story? Send an email with your name, age, headache disorder, and a little bit about yourself to kerrie [at] thedailyheadache [dot] com. I’ll follow up with some questions for you to answer.
Catie is a 20-year-old college student who has had chronic migraine her entire life. She remembers her first attack at age three, but was not diagnosed until she was five. In writing how migraine shapes her life, she said, “Because I have been dealing with this for my entire life I have no idea what normality feels like, but I also have no idea what kind of person I would be today without it. Having to push through the pain has made me a diligent student and a more empathetic human being, and it has also taught me the value of self-care. Additionally, migraine has given me direction as a student of public health, and in the next few years I hope to do research on the relationship between chronic disease and mental health.” It was a pleasure getting to know this vibrant young woman.
Do you feel like you’ve missed out on school experiences because of chronic migraine?
I don’t necessarily feel like I’ve missed out on anything, but there are definitely certain college experiences that I can’t have as a migraineur. For example, I know that if I want to take care of myself I can’t drink a ton of coffee and pull an all-nighter or go out drinking and partying, because these situations all involve triggers for me. And while I don’t exactly long to partake in these activities, I often feel that I have a difficult time relating to my friends whose lives seem to revolve around them.
How do you manage school with chronic migraine? Do you have any tricks for making it easier? Do you manage differently in college than you did in high school?
I’ve found that managing college with chronic migraine is surprisingly doable so long as I keep in mind that life has not afforded me the luxury of procrastination. Because I have no way of knowing when a particularly bad attack will come on, I always make sure my work is done a few days in advance of the due date. Doing this helps prevent migraine from affecting my grades and holds me to the same standards as everyone else, which is important to me.
In my opinion, college is a much easier environment to navigate as a migraineur than high school. One reason for this is that college assignments are always given far in advance of the deadline. In high school, one bad attack could be enough to affect my grades since homework was due just a day or two after it was assigned. Additionally, college gives me the autonomy to decide if I’m feeling well enough to go to class or if I need to leave to take my medication. In high school, I didn’t get to make these decisions for myself, and that often resulted in delayed medication and worse attacks. Finally, in college all the course material—including PowerPoints and often lecture recordings—is posted online, so I am at less of a disadvantage if I do need to miss class.
What coping strategies do you use to deal with chronic migraine?
The most effective coping strategy for me is to think of all the positive ways migraine has impacted my life. Sure, migraine has caused me incredible amounts of pain over the years. But it has also profoundly influenced who I am. Migraine has helped shape me into a diligent student and a resilient, empathetic human being. I don’t know who I would be without migraine. So every time I have an attack, I have to tell myself that I’ll come out of it a little stronger. I hope that one day I won’t have to live with migraine. But I also have to accept the likelihood that it will always be a part of my life, and I have to be okay with that.
What symptoms bother you the most?
The pain is by far the worst part. It honestly feels like a thunderstorm in my head. I know how little sense that makes to most people, but I don’t know how else to describe it. I can feel the throbbing just by placing a finger on my temples, and the pain gradually centers above my right eye and becomes increasingly intense. It really feels as if the pain has no limit, and it’s very frightening.
What do you wish people knew about migraine?
I wish more people understood that migraine is a chronic disease that can affect a life as profoundly as diabetes or epilepsy. I think people tend to see migraine as a singular event, and that just doesn’t match up with my experience. So much of my life is centered on trying to avoid the pain. So when people who have had a few bad headaches claim that they “know exactly what I’m going through,” that feels really unfair to me.
What else would you like to share?
I would just like to share this photo of myself and my boyfriend, Nick. Nick has been phenomenal in helping me cope with migraine over the past couple years. He is known for spending entire Friday nights lying next to me in a dark room and for reminding me that my migraine attacks are not my fault—not even the ones that follow a moment of weakness involving a Starbucks latte (my biggest and most tempting trigger). I’m so grateful to have that kind of support.
Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.
Catie, thank you so much for sharing your story- mine is similar to yours except I’m still in high school. I’ve having a particularly rough patch with my migraines and I’ve been feeling pretty worried about how I’m going to be able to handle college and the rest of my life, and your story really helped me. Thank you for letting me know that it’s doable, and for reminding me that I am the person I am today because of growing up with chronic migraines, and I wouldn’t want to change that.
Yashari, I was reading an article that said that children with headaches should be tested for lyme. I am in my forties and I found out that I have lyme .
Hey, I too am a 20 year old college student and our stories are so similar! I was diagnosed with migraine when I was 3 and have been spending all my life trying to avoid the triggers. Thanks for sharing your story, makes me feel like I’m not alone in this.
Jennifer, I would absolutely gather my materials/paperwork. I would make an appointment with someone in Disability Support Services, explaining the situation and its subsequent effect on you. Think through what you might need accommodation on: a bit of leeway in absence policy, turning in your work via email in order not to miss a deadline, etc. I would suggest being proactive with your professors. Let them know you are a serious student who intends to work her hardest for a top grade. People being people, some will be very understanding, and some will not. It is my understanding that the paperwork from DSS goes a long way to get you what you need.
Toran, I tried the Omega Procedure. I failed the trial but many have great success with it. I really liked the doctors that I saw there in Dallas. My insurance, which is Blue Cross Blue Shield of Minnesota did agree at the last minute to cover it for me.’
I admire you. I also want to encourage you. As a recently retired university teacher for almost 25 years, I am excited for you to be embarking on your college journey. In almost every class I taught, I would briefly mention that I managed migraines. I don’t think I had a single class in which someone let me know later that they, too, had experienced migraines. Have you heard much about the Omega Procedure (being done in Dallas, for one)? It involves wires/nerve stimulator implanted under the skin. Has anyone here done it? My concerns have to do with cost, insurance coverage, and if it really works.
Toran, the research evidence is slim, but there’s definitely a small portion of patients for whom it is very helpful. It’s worth talking to the doctor to see if you’re a candidate. I had one and it didn’t work for me. Here are links to some of my posts: http://www.thedailyheadache.com/?s=nerve+stimulator and http://www.thedailyheadache.com/?s=nerve+stimulation.
Take care,
Kerrie
What accommodations do you recommend for college? I’m in an engineering discipline and the tests are always too long for even a normal student, much less one with migraines. I find that, even though I know the material, I’m still struggling to finish in time. I finally realized, after a 3 day severe migraine, that I just can’t act like I don’t have a problem with keeping up with course work. I’m finally going to approach student services. My doctor is going to write me the documents needed. I’m just wondering what accommodations are reasonable.
Jennifer, I recommend checking some school websites. In a search for “migraine accommodations college,” I found one school that mentioned migraine in its disability services information. Here are the accommodations offered there:
http://www.macalester.edu/studentaffairs/disabilityservices/accommodations/. Really, you can look at any list of possible accommodations your school provides and choose the ones you think will be helpful for you.
And some information from Reddit: http://www.reddit.com/r/migraine/comments/1q2n7d/school_accommodations_for_migraine_sufferers/
Take care,
Kerrie
I also had to endure college with chronic migraines, and your experience closely mirrors mine. I didn’t get my first migraine until the day after i graduated high school, i can’t imagine having to deal with them in k-12; that must have been so difficult. Good for you for being so resilient, i have trouble seeing positives while in the midst of an attack. Dealing with them through college did help prepare me for life after, especially since becoming a mom!
Robin, thanks for sharing your story. I’m glad you’ve gotten some long-term benefit from having to endure chronic migraine in college!
Take care,
Kerrie
Catie sounds like such a mature, young lady and I am going to pass this blog post on to my daughter’s boyfriend who is a chronic migraineur. It might make him feel better to hear the ways that college might be easier than high school when it comes to managing the migraines. Also, Catie, I wonder if you have looked into nerve decompression surgery? It’s
a possible option for those who have tried everything else. I’m not totally sure how I feel about it, but wanted to just mention it in case you had not heard about it.
Traci, I’m so glad you found Catie’s story helpful and that it might be a relief to your daughter’s boyfriend.
Take care,
Kerrie
Thank you for sharing your story, I relate to so much of it. You are so strong and your positive attitude is something for me to aspire to!
Larissa, agreed! Your story will be the next one I post.
Take care,
Kerrie
Is there an alternate email address I can contact? I’m unable to contact kerrie…
Sidney, I emailed you. If you don’t get that message, leave me a note here and we’ll figure out another way to contact me.
Take care,
Kerrie
Sidney, did you get my email? I’d really like to connect with you.
Take care,
Kerrie
I nearly cried with from relief reading this amazing story. My daughter is a senior in High School with chronic migraine and getting ready for college next fall. I am going to have her read this so we can incorporate some of these ideas and habits into her routine. I have strongly felt the biggest problem my daughter has is the early 4am rising to get on the bus after 5am. If she had a bit of a later start she could be more consistent each day and this may help. She is going to a local college and will take some of her classes online so that should help as well. I just love reading your blog, I am always learning something new. Thanks so much.
I am glad that my daughter’s story could give you some relief. I know your daughter must be a strong young woman, as well.
Joanne, I assume you’re Catie’s mom. If so, you have a lovely daughter! You must be so proud of her.
Take care,
Kerrie
Juliana, thanks for your kind words. I’m so glad Catie’s story helped you. It sounds like you have a good plan in place for when your daughter starts college. If she runs into trouble after starting school, the school’s disability resources should be able to help with accommodations.
Take care,
Kerrie
What a strong, courageous, beautiful young woman!! Thanks for sharing your story & positive outlook on life!
Mindy, agreed!
Take care,
Kerrie