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30 Things About My Life With Migraine

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine with Brainstem Aura (formerly Basilar-Type Migraine), Chronic Vestibular Migraine (Migraine Associated Vertigo), Chronic Migraine without Aura, possible Cluster Headaches (undiagnosed as yet).
2. My migraine attack frequency is: 25 out of 30 days per month.,
3. I was diagnosed in: 2004, approximately 23 years after my first migraine.
4. My comorbid conditions include: Cervicogenic headache, Cervical spondylosis, Occipital neuralgia, Fibromyalgia, Sleeping disorders, Major depression and anxiety, IBS, Endometriosis, Asthma, and Raynaud’s Phenomenon.
5. I take 13 medications/supplements each day for prevention and 11 medications/supplements to treat an acute attack.
6. My first migraine attack was: in my teens around my menstrual cycle.
7. My most disabling migraine symptoms are: passing out during my aura, vertigo, balance and cognitive difficulties.
8. My strangest migraine symptoms are: hiccups and a chill up my spine.
9. My biggest migraine triggers are: the weather, blinking lights, turning my head sideways and sensory overload.
10. I know a migraine attack is coming on when: I get a chill up my spine, buzzing in my ears, I start yawning and I get irritable. But many times I have no warning and just pass out and drop where I am, no matter what I’m doing.
11. The most frustrating part about having a migraine attack is: the unpredictability. It makes it extremely difficult to even schedule doctor appointments, let alone get together with family or friends.
12. During a migraine attack, I worry most about: the effect it has on my family. When I’m in an attack, I can’t handle noise or conversation or even TV. I need things absolutely quiet or I get sensory overload. I miss so much family time because of this.
13. When I think about migraine between attacks, I think: about when the next one is going to strike. It’s a neverending cycle.
14. When I tell someone I have migraine, the response is usually: a story about them or someone they know who has migraine and what helped them.
15. When someone tells me they have migraine, I think: I am overwhelmed with empathy. No one knows the agony of a migraine attack except those who have gone through it. I wouldn’t wish it on my worst enemy.
16. When I see commercials about migraine treatments, I think:they just don’t get it.
17. My best coping tools are: guided imagery CDs, a dark and quiet room, ice or heat, soft pillows and sleep.
18. I find comfort in: never, ever losing hope.
19. I get angry when people say: “I just saw this on TV, it says it will cure a migraine. Have you tried it?”
20. I like it when people say: they will pray for me.
21. Something kind someone can do for me during a migraine attack is:check on me in my room, bring me a glass of ice water and make sure I’m comfortable.
22. The best thing(s) a doctor has ever said to me about migraine is: it’s a real neurological disease; it’s not in my head. He believed me. That validation did wonders for my self-esteem.
23. The hardest thing to accept about having migraine is: all the things I have missed out on. Over ten years of my kids growing up. Not being able to be the kind of aunty I want to be to my three nephews. I’ll never get that time back. It makes me angry.
24. Migraine has taught me: to live in the moment and be thankful for each moment that I feel well.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day, saying ‘I will try again tomorrow.'” I also like “When the world says, ‘Give up,’, Hope whispers, ‘Try it one more time.'”
26. If I could go back to the early days of my diagnosis, I would tell myself: to stand up for myself, be more assertive with my medical team and not take no for an answer.
27. The people who support me most are: my mom and dad.
28. The thing I most wish people understood about migraine is: how debilitating it is.
29. Migraine and Headache Awareness Month is important to me because: it is a time when we, as patients, and our loved ones can band together to become advocates. There are so many ways to participate and many of them are so very simple. There are 36 million of us patients in the United States. If we each did one thing during Migraine Awareness Month to make our voices heard, it would go a long way to raising funds and increasing funding for the National Institutes of Health from Washington. It only takes one person to make a difference. June is the time. Please, do your part. We have to help ourselves.
30. One more thing I’d like to say about life with migraine is: hope and patience are the keys to living any semblance of a life. Hope that there will be new and better treatments coming soon, and patience to wait for them! 🙂

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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Getting a Second Opinion Online

Seeking a second opinion can allay headache- and migraine-related fears. But most of us are lucky to have one good headache clinic within an eight-hour drive, let alone having two to choose from for a second opinion. How about getting that second opinion right from your computer?

Through e-Cleveland Clinic, patients pay $565 for a physician’s written second opinion and treatment recommendations. Insurance companies don’t pick up the cost, but if a second opinion would require substantial travel expenses, this might be a better option.

You have to register before you can access the list of more than 600 life-threatening or life-altering conditions included in the program. I searched for “migraine” and “headache.” Both times the only diagnosis listed was migraine associated vertigo/dizziness, but users can e-mail to see if their particular diagnosis is included even if it’s not on the list.

Partners Healthcare has a similar online consultation, but your doctor and the Partners’ doctor communicate with each other directly. Available consultants are arranged by specialty, not by diagnosis as at e-Cleveland Clinic, but neurology is available.

Fine print: These services are only for second opinions. You must submit all your prior health records for review. Residents of Washington DC, Georgia, Kentucky, Louisiana, Nevada, North Dakota, South Dakota, Oklahoma and Wyoming cannot use e-Cleveland clinic (although the article’s author got around this by using her parents’ address in Illinois). Partners’ services are unavailable in Iowa, South Carolina, Louisiana, Tennessee and Oregon.