I first became acquainted with Barbara Ross when my mother-in-law, Barb, was on the executive director selection committee for the agency that is now Lighthouse of the Big Bend. As the years elapsed, we became friends. I have always respected her many professional gifts; I love her loyalty, perceptiveness, and communicativeness as a friend.
Barbara has had many health challenges over the past several years, severe enough to leave her job. The process of finding a diagnosis has been daunting. Many mysteries remain, but one thing she does know is that migraines are a part of the complex of issues with which she is dealing.
When she posted “30 Things About My Life with Migraine” on her Facebook page, I asked if I could share this list with my blog readers. Although everyone’s experience is different, the list does an incredible job of a) explaining one person’s experience with migraine b) explaining to friends, family, and the general public what they can do to help someone who suffers from migraine, and c) acknowledging the people who have been her devoted supporters.
Thank you for sharing this migraine headache awareness post, Barbara, and for making one of the hardest things you’ve ever endured a vehicle to help others understand.
1. My diagnosis is: migraine without aura, chronic (i.e. daily)
2. My migraine attack frequency is: 6 – 7 times a week
3. I was diagnosed in: 2000-ish with migraines maybe twice a month
4. My comorbid conditions include: a) POTS / neurocardiogenic syncope / orthostatic hypotension (aka when I stand, my blood pressure falls and my heart races, resulting in fainting because of a screwy autonomic nervous system) b) reflux/GERD c) hypothyroidism
5. For prevention I’m trying Botox, plus one daily medication, plus one supplement (CoQ10.) I use 3 triptan medications to treat acute attacks although these only work 60% of the time.
6. My first migraine attack was: on a plane flying back from Ireland in 2000. In June 2015 my migraines worsened and by December 2015 they were daily.
7. My most disabling migraine symptoms are: severe nausea, vomiting, extreme pain in temples, painful sensitivity to noises, inability to think (brain fog)
8. My strangest migraine symptoms are: anything touching my skin hurts like rough sandpaper rubbing against me
9. My biggest migraine triggers are: bad weather and disrupted sleep
10. I know a migraine attack is coming on when: I have a sudden, extreme drop in energy.
11. The most frustrating part about having a migraine attack is: not being able to make my brain work – it interferes with everything I try to do on a practical level, but also my identity is tied to my intelligence & creativity which are often inaccessible.
12. During a migraine attack, I worry most about: being an imposition, letting others down, and not getting ill in public.
13. When I think about migraine between attacks, I think: I have to find something to prevent my being sick so often so I can resume my life – be a partner to Michelle, have fun with friends, dance, write, get a job to continue making a difference in the world, etc.
14. When I tell someone I have migraine, the response is usually: crickets in the awkward silence – most folks don’t seem to know what to say.
15. When someone tells me they have migraine, I think: ‘Oh NO!’
16. When I see commercials about migraine treatments, I think: I wish that worked for me…
17. My best coping tools are: Quiet (thank goodness for ear plugs), ice pack on head, lying down on something soft, cool air, sleeping.
18. I find comfort in: empathy from others, affection, understanding of loved ones, kindness
19. I get angry when people say: “You need to do better at getting a handle on this.”
20. I like it when people say: words of understanding & empathy or sympathy, even ‘you poor thing’ is better than silence.
21. Something kind someone can do for me during a migraine attack is: keep things quiet, cool, and bring me an ice pack.
22. The best thing(s) a doctor has ever said to me about migraine is: I know this is horrible for you.
23. The hardest thing to accept about having migraine is: it sucks there is no cure… I would do anything to end this.
24. Migraine has taught me: to take advantage of energy when I have it and be grateful when I’m not so ill I have to lie flat.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I know this will ease up eventually.
26. If I could go back to the early days of my diagnosis, I would tell myself: save more money!
27. The people who support me most are Michelle & Robin
28. The thing I most wish people understood about migraine is: there is very little you can do about it, it is not in your control.
29. Migraine and Headache Awareness Month is important to me because: maybe awareness will bring funding which will bring a cure.
30. One more thing I’d like to say about life with migraine is: Every time I have an actual good day, without a migraine, I hope that somehow I’m healed and can return to life… only to be crushed with disappointment.
Being so sick every single day is one of the hardest things I’ve ever endured.
To follow along on social media during Migraine and Headache Awareness Month, use the hashtags #MigraineAwarenessMonth and #MHAM.