30 Things About My Migraines

I noticed a questionaire going around on one of my migraine support groups called 30 Things About My Migraines and I thought it would be a good idea to post my responses here. I found the list of prompts on migraine.com

1. My diagnosis is: Chronic daily headaches and chronic migraine with aura.
2. My migraine attack frequency is: daily but vary in intensity
3. I was diagnosed in: in 1999
4. My comorbid conditions include: Chiari Malformation, Intracranial Hypertension, Postural Orthostatic Tachycardia, TMJ, Ehlers-Danlos Syndrome, Fibromyalgia, anxiety and depression
5. I take 7 medications/supplements each day for prevention and 9 medications/supplements to treat an acute attack (not all at the same time)
6. My first migraine attack was: at the age of 13
7. My most disabling migraine symptoms are: nausea, intense head pain, confusion, dizziness, photophobia
8. My strangest migraine symptoms are: allodynia
9. My biggest migraine triggers are: hormones, lack of sleep, eating poorly/skipping meals, weather changes
10. I know a migraine attack is coming on when: I get a weird feeling in my head that feels like the pain is mild but will go full out at the tiniest trigger. It's hard to explain
11. The most frustrating part about having a migraine attack is: the way it keeps me from living my life to the fullest
12. During a migraine attack, I worry most about: how long it will last and how many things I will have to cancel
13. When I think about migraine between attacks, I think: I remind myself that I can't live my life thinking "what if". Sometimes I catch myself thinking "what if this triggers a migraine" and feel like maybe I shouldn't do certain things just in case. But then I catch myself and think "you can't live thinking 'what if' about everything". Instead I chose to be happy and live life to the fullest when I can 
    
14. When I tell someone I have migraine, the response is usually: the people I have in my life generally respond with sympathy and concern
15. When someone tells me they have migraine, I think: how I wish they didn't. I know how terrible it can be and I wouldn't wish this on my worst enemy. 
16. When I see commercials about migraine treatments, I think: they are incredibly frustrating. They make it look easy to combat a migraine. "Just take this pill, and it will go away!" For the majority of people, it doesn't work that way. There is no magic pill that makes it go away quickly. And these commercials convince people who don't know any better a false sense of what it's like.
17. My best coping tools are: my wonderful and understanding family, sunglasses, plenty of water, and crackers and soda for nausea
18. I find comfort in: my family and friends, reading books, and the family pets
19. I get angry when people say: "oh, it's just a headache" or "I had a migraine once. It wasn't so bad".
20. I like it when people say: "I'm sorry you're going through this" or "what can I do to help?" Just knowing they care and don't downplay my pain and suffering means the world to me.
21. Something kind someone can do for me during a migraine attack is: tell me it's ok to do what I need to do to get better, even if it means missing an event that they wish I could come to. They don't hold it against me when I have to cancel plans last minute. 
22. The best thing(s) a doctor has ever said to me about migraine is: "there are so many treatments out there and we just have to find the right mixture for you. I will never tell you 'there's nothing else I can do to help you'". Knowing that my doctor will never give up on me means the world to me
23. The hardest thing to accept about having migraine is: having no control over it. Knowing that any plans I make could be cancelled at any time simply because my migraine decides to rear its ugly head. And knowing that my life right now is not the life I pictured and hoped for when I was younger
24. Migraine has taught me: how to take care of myself. I was (and am) frustrated that my life isn't what I wanted and that I can't work. A doctor once told me "your job right now is you". He also said not many people my age get the chance to explore and discover what they are passionate about. I am getting that chance to really explore myself and my interests. 
25. The quotation, motto, mantra, or scripture that gets me through an attack is: 
    
    
    
26. If I could go back to the early days of my diagnosis I would tell myself: to live life to the fullest and take better care of myself. And to never give up hope
27. The people who support me most are: my parents, sister and brother-in-law, my brother, and my close friends
28. The thing I most wish people understood about migraine is: that migraine is not "just a headache". It is an assault on the senses and has the potential to reduce the strongest person you know into a sobbing disaster 
    
29. Migraine and Headache Awareness Month is important to me because: it gives us migraineurs and headache sufferers a chance to explain to the world what this condition does to us and our lives.
30. One more thing I’d like to say about life with migraine is: I couldn't manage my life without my family, friends, and doctors. If I had to suffer this on my own, I wouldn't have the hope I have now. I wouldn't have the wonderful life I have now. Even thinking about what my life would be without these people is depressing