30 Things About Katie's Life With Chronic Migraine
- My diagnosis is: Chronic Migraine.
- My migraine attack frequency is: Daily. I have some form of a headache at all times. A typical day starts at a pain level 3 and increases as the day goes on, with nighttime being the worst. And that’s a good day! I can have stretches of time when the pain is unbearable, a constant 8 or 9. Days, even weeks on end where I get no relief.
- I was diagnosed in: I will never forget the day my headache specialist told me that my condition was chronic. That was in 2011, I was 30 years old. I couldn’t imagine living like this every day for the rest of my life.
- My comorbid conditions include: I have gastrointestinal issues from the large quantities of meds I take. I have a few other medical issues that are not related to the Migraines that are a pain to coordinate with my main focus of Migraines.
- I take 9 medications/supplements each day for prevention and I have 5 medications/supplements to treat an acute attack. Just to be clear, I never take all 5 abortives at the same time. My doctor is worried that certain meds may not work effectively in the long term if I only take one. So our plan of attack is to rotate the abortives.
- My first migraine attack was: I was five. I was getting ready to go to my best friend’s house for her birthday. I got a visual aura. I remember leaning over my parent’s bed in severe pain. All I could do was cry, scream really. After about four hours, I vomited and the pain stopped. I missed the birthday party...and so many more over the years.
- My most disabling migraine symptoms are: Having a visual aura changes my whole world. I just know the hell that I’m about to endure.
- My strangest migraine symptoms are: I crave salt. All I want to eat are French Fries.
- My biggest migraine triggers are: Breathing. Now that my Migraines are chronic (meaning at least 15 Migraine days a month or more), it is very difficult to pinpoint one trigger. I also believe that multiple triggers accumulate and finally my brain can’t take it and fires out the pain. It could’ve been those 2 Cokes I had yesterday or the thunderstorm this morning or the stress of paperwork for disability. Most likely it was all of the above.
- I know a migraine attack is coming on when: I have a visual aura. However, those are less common now since the Migraines are Chronic. I also know when the Migraine is trying to get my attention because of the increased pain and the fact that I struggle with basic tasks.
- The most frustrating part about having a migraine attack is: I lose my ability to think clearly. I just want someone to tell me what to do or which medication to take. It’s hard to put together a coherent sentence or thought.
- During a migraine attack, I worry most about: I worry about what I’m missing or how to rearrange my schedule.
- When I think about migraine between attacks, I think: enjoy feeling semi-normal now because it can change very quickly.
- When I tell someone I have migraine, the response is usually: People either tell me that they have Migraines or someone close to them has them.
- When someone tells me they have migraine, I think: What can I do to help them?
- When I see commercials about migraine treatments, I think: It’s annoying, but honestly I’m glad that there are treatments out there that help people. I just haven’t found my magic bullet yet.
- My best coping tools are: I use essential oils. I stretch my body out with yoga and I work on meditation. These are my daily go-to moves to handle the pain.
- I find comfort in: My bed. Or staying with a friend or at my parent’s house during a particularly long stretch of attacks. They all know to just let me sleep and it’s comforting to know they are there.
- I get angry when people say: “I’m sorry.” It’s a nice sentiment, but I don’t know how to respond. I’m sorry too! This sucks!
- I like it when people say: “If you can’t make it, I understand.” That means they understand my illness and I don’t have to feel guilty about not being able to participate.
- Something kind someone can do for me during a migraine attack is: Bring me French Fries and a Coke!!
- The best thing(s) a doctor has ever said to me about migraine is: As I was hospitalized for a new, experimental treatment, a doctor told me that if I get any relief from this I need to remember that triggers are still triggers. There is no cure for Migraine. Don’t kid yourself that you can now do whatever you want. Continue to take care of your Migraine body and hopefully the treatment will last longer and help more.
- The hardest thing to accept about having migraine is: My life plan had to change to fit within my limitations. I went through the 5 stages of grief, it sucked. But now I can see a happy life even with the pain in my brain.
- Migraine has taught me: Be kind. You never know what demon someone else is dealing with that you can’t see on the surface.
- The quotation, motto, mantra, or scripture that gets me through an attack is: My personal mission statement is to “Live a Fulfilled Life While Managing Chronic Migraines.”
- If I could go back to the early days of my diagnosis, I would tell myself: Don’t place so much hope on any new medication or treatment option. It would’ve saved me so much heartache when it didn’t work for me.
- The people who support me most are: My boyfriend of five years deserves a medal. My parents and brother have been there since the first attack at age five and they take care of me now too. I also have an amazing group of friends who check in on me.
- The thing I most wish people understood about migraine is: This is a neurological disease, not an excuse. I wish everyone experienced at least one Migraine in their life. Then maybe there wouldn’t be such a stigma.
- Migraine and Headache Awareness Month is important to me because: This is my life now. I not only have to manage my own illness, I’ve become committed to helping others who suffer too.
- One more thing I’d like to say about life with migraine is: Be patient. It takes longer than a week or two to figure out what treatments are going to help you. There is currently no cure for Chronic Migraines. The best you can hope for is to find ways to cope and manage your illness.
The Migraine and Headache Awareness Month meme contains 30 questions for migraineurs about what it's like to live with migraine. Throughout the month, we'll be sharing Migraine.com writers' responses. To answer the questions yourself, visit the meme's home on The Daily Headache. Your response will be published with a URL that you can share (though you can publish anonymously if you prefer).
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