Migraine Awareness & My Story
- There isn’t enough understanding of migraine.
- There isn’t enough research on migraine, don’t get me started on how that’s because it’s a “female disease”.
- There is next to no recognition, not to mention understanding, of aura amongst neurologists (even some headache specialists!) not to mention the general public.
- Aura gets some research when it comes to unlocking the cause of migraine, but gets next to no notice when it comes to research on treatment.
- Both Migraine with Aura & Migraine can be disabling conditions.
Learn more about or get support for Migraine
- The Vestibular Migraine Facebook Group3
- The American Headache and Migraine Association4
- The Migraine Trust5
- The Migraine Research Foundation6
My Migraine Story
I think my 30 Things tells my story pretty well:
My diagnosis is: Chronic Migraine with Basilar/Complex Aura, history of Intractable Status Migrainous
My migraine attack or headache frequency is: It varies depending on what else is going on. Currently it is daily, though from August – April it was several times a month. Very opptimistic I’ll be back there soon.
The first migraine attack or headache I remember was: I woke up dazed and with a horrible pounding on the left side of my head and Norman Bates in my left eye. I stumbled down the stairs into my mother who handed me my first Wigraine.
My pain levels range from: 0-10
I was diagnosed in: 1995
My comorbid conditions include: Meniere’s Disease, Lupus, Endometriosis, Mood symptoms
I take 1 pill each day for prevention and to treat an acute attack I take 4-6 medications, I also get Botox.
In addition to pain, the aura symptoms I experience are: Loss of cognitive function, speech loss, loss of spatial awareness, Alice in Wonderland syndrome, chest pains, tingling in my hands and/or feet, hand tremors, involuntary movement in my hands, clumsiness, changes in heart rate, loss of consciousness, loss of peripheral vision, noetic experiences, loss of consciousness, among other things.
I thankfully do not get all of these at once, usually it’s just a couple unless I am in a status migraine or some other truly spectacular thing is going on with my body.
Treatments I have tried include: At least half a dozen preventatives, half a dozen abortives, and half a dozen supplements.
During a migraine attack or headache, I: If my Lamictal isn’t working I become an incoherent, dazed, dizzy, nauseous girl who’s lucky if she can say her own name until the pain really sets in.
My migraine attacks or headaches are triggered or get worse when: There are major weather changes, I unfortunately cannot control that. I can have auras triggered by flashing lights, and sometimes it progresses to a full migraine. Florescent lights and I aren’t friends.
Otherwise if I manage my controllable triggers mainly certain foods (red wine, MSG, etc), dehydration, lack of sleep, stress . . I am ok. I’ve had 21 years of practice so I tend to be ok with the triggers that I can control.
The most frustrating part about having migraine or a headache disorder is: The auras, it is very scary losing control over so much of my brain at random. I can’t function, and they come on fast. I’ve spent many a lunch break wandering around shopping centers lost while I wait for one to pass over, or I finally get my wits about me to induce a full migraine. Yes, I’ll do something like eat something with MSG to push an aura away.
Having migraine or a headache disorder causes me to worry about: The safety of myself and those around me during an aura.
When I tell someone I have migraine or a headache disorder, they usually assume or say: That I just get migraine headache, I thankfully rarely get the “it’s just a headache comments”. Rather people start to commiserate about the regular migraine issues, and once they realize the extent of my auras, I get more sympathy than I feel comfortable with.
When I see ads or articles about migraine or headache disorders, I think: What about the auras? We are stuck blind, paralyzed, or dumb for sometimes hours. Yet, we get so little attention or research. We aura kids likely have some of the keys of unlocking migraines as a whole, and we have no meds studied with us in mind.
My best coping tools are: Music – helps get my thinking in a forward trajectory. Meditation – allows me to float through an attack versus wander around aimlessly. Doing something crafty with my hands – helps me improve my perceptual issues. Mindfulness 🙂
I find comfort in: A cup of tea :), an educational podcast, comfy clothes, cats, my sunglasses, writing, and a soft blanket.
I get angry when people say: “No one understand my pain”, yes, fellow migraineurs I am looking at you. Almost everyone has the capacity to empathesize with your pain, and saying they can’t understand places a barrier and makes us all look bad.
I like it when people say: That they get it, and my reality must suck sometimes.
Something kind a person can do for me during a migraine attack or headache is: Give me space, especially during an aura. During an aura I can’t make sense to you, and you make no sense to me. During the “headache” phase I need to crawl into my cave and do what I need.
The best thing a doctor has ever said to me about having migraine or a headache disorder is: “You have complex aura”. Thankfully I’ve been told this by a few neurologists. My current neurologist after thanking him for getting me back down to migraines a few times a week said, “That’s not enough, I want you to get better”.
Having migraine or a headache disorder has affected my work/school life by: Unfortunately causing to me be out when auras cause me to be a complete dithering idiot. When my auras go supernova due to status migraine or other spectacular things I often need to go on short term disability, which is no fun. When the auras are mangeable and my pain is an 8 or below I work.
The hardest thing to accept about having migraine or a headache disorder is: I don’t know, I’ve had this so long, in fact in my family it is normalized since so many of us of had it for over four generations. It is just a part of me.
Having migraine or a headache disorder has taught me: To roll with resistance, that anything is possible if you work at it, thinking outside the box, finding strengths in weakness, empowerment in hardship.
The quotation, motto, mantra, or scripture that gets me through hard days is: “No feeling is final” Rainer Maria Rilke
If I could go back to the early days of my diagnosis, I would tell myself: You got this kid.
The people who support me most are: My boyfriend, my mom, my coworkers, and the internet.
The thing I most wish people understood about migraine or headache disorders is: Migraine can have these pesky things called auras.
Migraine and Headache Awareness Month is important to me because: Migraine as a whole needs more understanding and research, and migraine with aura gets almost no recognition an no research.
One more thing I’d like to say about my migraine or headache disorder is: I don’t let it run my life, don’t anyone but you run yours.