30 Things Meme

30 Things About My Life With Chronic Migraines

This is a reader-submitted story.

1. My diagnosis is: I have been diagnosed with chronic migraine. I suffered for 16+ years before I finally went to a doctor for help.
2. My migraine attack frequency is: Before I found a preventative that worked, I was getting migraines anywhere from 12 – 15 times a month. They would last sometimes for 4 days at a time, and my longest migraine attack was 9 days. Now I get maybe 3 migraines a month, but depending on certain triggers and their prevalence, I may get more.
3. I was diagnosed in: I’ve always known I had migraines, but I was “officially” diagnosed when I was 18.
4. My comorbid conditions include: Depression, anxiety, bipolar disorder, borderline personality disorder, seasonal affective disorder.
5. I take 6 medications/supplements each day for prevention and 2 medications/supplements to treat an acute attack.
6. My first migraine attack was: When I was 7 years old. I don’t remember much except having an excruciatingly painful headache. Their frequency and intensity grew as I got older.
7. My most disabling migraine symptoms are: My nausea, weakness, fatigue, and complete inability to concentrate. When I have a very severe attack, I am afraid I am going to pass out. It hurts to breathe, talk, and stand/sit.
8. My strangest migraine symptoms are: My hair sometimes hurts.
9. My biggest migraine triggers are: Weather and temperature changes, exposure to extreme hot or cold, lack of sleep, my menstrual cycle, very strong perfumes and fragrances, skipping meals, not having enough water, stress letdown.
10. I know a migraine attack is coming on when: I yawn frequently. I also start to feel a slight twinge behind my eye on the side the migraine is going to be. I also get extremely thirsty to the point where no amount of water quenches my thirst.
11. The most frustrating part about having a migraine attack is: That I am sometimes fully incapacitated and people do not get that. I have been berated, discriminated against, and had people say extremely negative, degrading things to me about my attacks simply because they do not – or refuse to – understand them and their severity.
12. During a migraine attack, I worry most about: Getting comments from people at my job and people in my life getting angry at me for potentially not being able to follow through on something I had planned in advance.
13. When I think about migraine between attacks, I think: that I wish more emphasis was placed on migraine awareness and education. I am grateful that I am between an attack. I am hopeful that my next attack won’t come for some time.
14. When I tell someone I have migraine, the response is usually: I get two different responses. From someone who doesn’t understand, I get a “Did you take a [throw OTC med in here]?” From someone that does understand what I am going through, they say they are sorry and will ask if I want to go home or want to change the plans we may have made.
15. When someone tells me they have migraine, I think: I automatically want to help them and take care of them. I give them suggestions on easing or eliminating the pain. If the migraines are chronic and serious for them, I ask if they’ve considered seeing a specialist or taking preventative medication.
16. When I see commercials about migraine treatments, I think: The only commercials I really see are the ones for Excedrin Migraine or other OTC medications that I truly do not believe work for someone that gets chronic migraines. OTC medications have never worked for me, and it frustrates me that these commercials perpetuate the stereotype that an over-the-counter medication is the be-all-end-all of migraine treatment.
17. My best coping tools are: My abortive medications, hot washcloths, laying in my bed in the dark with a pillow that has “cooling” material, peppermint oil, massaging my temples or the back of my neck.
18. I find comfort in: people who truly understand what I am going through, whether it is someone I know in person or individuals online. Articles relaying the severity of migraine disorder and what it truly is help me communicate to those who don’t understand what migraine is.
19. I get angry when people say: “Take an Advil.” “I don’t understand why you don’t get so many migraines.” “My [insert family member here] got migraines, and they never had them this often.” “You just need to get up and do something to take your mind off the pain.”
20. I like it when people say: “I can’t imagine living with migraines like you do. I’m really sorry.” I also “like” it when someone I know – who did not understand what a migraine truly was – gets one and tells me “I can’t believe you deal with that so often. I never knew what you were going through until I got one myself.” The reason I put like in quotes is because I never actually WANT someone to get a migraine; I wouldn’t wish it on my worst enemy. But it is comforting when someone who previously didn’t understand finally does.
21. Something kind someone can do for me during a migraine attack is: Be understanding. Don’t get mad at me if I have to cancel plans because of my migraine. I am not making it up and I am not being dramatic. I am in severe pain and cannot function, especially if it gets me to the point where I have to cancel previously made plans.
22. The best thing(s) a doctor has ever said to me about migraine is: “There are so many options out there. We will keep trying until we find one that works. We will make this better.”
23. The hardest thing to accept about having migraine is: That there is no cure and that I may have this, and have to take medication daily for it, for the rest of my life.
24. Migraine has taught me: To be proactive about my healthcare. To seek doctors that understand and want to do whatever they can do to help you. Don’t settle for a doctor that doesn’t get your migraines and simply just keeps prescribing medication or upping a dosage if it’s not working.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “If you’re going through hell, keep going.” – Winston Churchill.
26. If I could go back to the early days of my diagnosis, I would tell myself: “You will find something that works. You won’t always spend days throwing up for 24 hours because your migraines are so bad and your nausea is so overpowering. There are options out there, and you will find something that works and still be successful in your career and other areas of your life.”
27. The people who support me most are: My family, my doctor, and my friends who understand migraine.
28. The thing I most wish people understood about migraine is: They differ for everyone. Just because someone knows someone who gets a migraine and has a different experience than I do doesn’t mean that I am making it up or that my doctor isn’t doing anything to help me.
29. Migraine and Headache Awareness Month is important to me because: It helps bring awareness to this disorder and hopefully will make those who don’t understand more cognizant of what migraineurs go through. It’s also important because more needs to be done to research treatments, preventions, and possible cures.
30. One more thing I’d like to say about life with migraine is: It truly is a difficult and debilitating disorder. I have been dealing with migraines all my life and have had terrible things said to me because of my propensity for migraines. I’ve been told I will never get a job or have a successful career because of my migraines. I have had coworkers talk about my migraines and laugh at me behind my back that I have one “again.” I have had friends get very angry with me because I had to cancel plans due to my migraines. I’ve been told to “get over it” and that I won’t ever be able to have a family or children if I have to stay in bed one day because of a severe migraine. If you know someone who suffers from migraines, please try to understand what they are going through. This is not made up. We are not faking it. OTCs don’t always work – that is a myth. Some of us already feel guilty enough about our health issues, and negative comments do not make that any better.

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

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