by Donna J Kobayashi
1) My diagnosis is:
2) My migraine attack frequency is:
Daily, I have some head pain between pain level 3-7. I have full migraine attacks 2-5 times a week. Most days I’m sporting a 4 and that’s good but it hurts and it’s stupid.
3) I was diagnosed in:
~2007 but it’s unclear because although I “heard” the diagnosis, it was years before I’d understand the true impact of what “chronic” meant. Denial is not just a river in Egypt.
4) My comorbid conditions include:
I have several which just adds to the joy. Autoimmune, chronic, comorbid and a partridge in a pear tree.
I take 11 Medications/supplements daily and have ~30 injections in my head/neck every 4-6 weeks – all of these are for migraine PREVENTION – shiny pills & magic juice. I have 9 medications for a migraine attack (these are called migraine ABORTIVES or RESCUES) – I never take these all at once, of course. However, I need to rotate medications so I don’t develop a rebound pain from any one medication.
6) My first migraine:
I was about 6. YMCA summer camp. It was so loud with all the kids in the gym and I felt like my head was exploding. I became very inward and my mom told me later I was having a migraine; she recognized it because she was a migraineur. Like insanity, migraines tend to run in families.
7) My most disabling migraine symptoms are:
The head pain…when it gets to a level 10…you can’t escape the pain…it becomes your everything. And you feel like you could just stop breathing, it hurts that much. It alters my personality and emotions and I start to despair, feel hopeless and upset. It’s like being tortured in your own doorless mind prison. I become ‘not myself.’
8) My strangest migraine symptoms:
I have photophobia almost all the time…even with no migraine. Sunglasses are a must and I feel stupid having to wear them – I’m really not trying to act like a celebrity, but I did stay at a Holiday Inn last night.
9) My biggest migraine triggers are:
Everything and nothing at all! Lol. Actually I have pinpointed them to: *fluctuations in weather including pollen, wind, humidity, sun, rain, temperature *fluctuations in hormones *stress and especially stress let-down *too little sleep *skipping meals *certain alcohols *certain noises…for instance, Taylor Swift’s voice.
10) I know a migraine attack is coming on:
Many take me by surprise or I wake out of sleep with them. Others have a certain “sting;” I can sense them in my mid brain and I know I must treat them or they will escalate. I have never had an *aura* – only 30% of migraineurs have aura that warn them of a coming attack.
11) The most frustrating part of having a migraine attack is:
My life goes on *hold.* I do not know how long it will debilitate me but I’m sure I will end up letting someone down. 😦 I feel like I lose any control of my life. One of the most frustrating things is my thinking is impaired or difficult, my vocabulary recall is gone. The word I’m looking for is always on the ‘tip of my tongue.’ I flake out a lot. I used to have a great memory, but now simple things escape me. I need reminders. Thank goodness for my smart phone. I don’t know if it’s a side effect of the medicines I’ve been on or a symptom of the disease, but my mind has lost so much and it’s terribly upsetting. Please don’t take offense if I forget something!
12) During a migraine attack, I worry most about:
What I’m missing, who I’m letting down, when it will be tolerable, how I will rearrange my schedule.
13) When I think about migraine in between attacks:
I get pissed. For once, I’d like to forget it completely. I try very hard to focus on joy, positivity and enjoying the moment.
14) When I tell someone I have a migraine:
They usually tell me they’re sorry and they or someone close to them gets them too.
15) When someone tells me they have a migraine:
I want to take care of them or help: put them to bed, bring them an ice pack, their medicine, take care of their kids.
16) When I see TV commercials about migraine treatments:
I think, wow, remember when I could just throw back a couple of ibuprofen and be good? Those were the days. I think about how much specialists and researchers don’t understand about migraine and the brain and how docs and pharmas are just experimenting on us. There are no medications created for migraine. And research is so limited.
17) My best coping tools:
Ice packs, rest and sarcasm – always that.
18) I find comfort in:
My bed is my Happy Place, ice can numb my pain brain and knowing my family is safe. Hearing my children nearby is incredibly comforting …especially if they are not fighting.
19) I get angry when people say:
They had a migraine and couldn’t move and had to stay in bed for hours. I know it’s a harmless thing to say and they are trying to show support and commiserate, but I feel like they are really questioning my pain because I am moving around living and not immobile in bed. There comes a time when you can NOT just stay in bed because you hurt; your family’s needs don’t allow such a luxury. And with so much daily pain, you just learn to keep moving. When I miss out on things, I cry every time. I feel like migraine continually robs me of life…and it won’t stop until it has it all.
20) I like it when people say:
I believe you and I understand if you can’t make it.
21) Something kind someone can do for me during an attack:
Send me a selfie or a pic of what they’re doing, a text or a joke. Don’t ignore me. I adore feeling connected when I can’t physically be connected. Laughing is such wonderful medicine.
22) The best thing a doctor has ever said to me about migraine:
“Don’t give up. We will figure this out together. I’m not giving up on you. You’re really doing a great job managing this and I’m proud of you.”
23) The hardest thing to accept about having a migraine is:
I can’t do it all, I have to pace myself like an old lady. If I push even a little too hard, I will have to pay dearly the next day. I’m not in control of this monster. 😦
24) Migraine has taught me:
Massive humility, faith, gentleness and non judgement towards others and that there is so much unknown about the brain. It’s also taught me that if you find the humor in any situation, you automatically win.
25) The quote that gets me through an attack:
It is better to look good than feel good (Sarcasm is an awesome tool). More seriously, the quotation: Pain ends, Love is Everlasting.
26) If I could go back to the early days of my diagnosis:
I would tell myself that I was NOT a freak and I didn’t have to pretend to be “normal.” This illness is REAL and there are thousands of people struggling with it everyday. You’re not alone and you’re not a freak. It’s okay; be gentle with yourself and love yourself. You’re doing the very best you can. ❤ Quit trying to please everyone; haters gonna hate. And invent the selfie stick.
27) The people who support me most:
My husband, my children…they are extraordinary and their compassion and love has no limits. I cannot believe their patience and understanding of me and my illness. They are without a doubt, my Rock. My friends and family who understand the illness and know how hard I’m fighting…even if they’ve never had a migraine. Other migraineur buddies. 🙂
28) The thing I most wish people understood about migraine:
it’s a neurological disease not a headache. I haven’t been sitting here my whole life just allowing it to *happen* to me. I’ve been active, curious, demanding and researched everything I possibly can…I see specialists in all types of classic and alternative medicine… I attack migraine from numerous angles. I’ve tried and do more treatments than an average person can possibly fathom. I so appreciate friends passing along ideas or treatments they’ve heard about because they absolutely could help! But be patient and realize that I am a migraine guru and very, very active in my healthcare and a downright expert on *my* migraines. 🙂
…and I space out a lot. Did I already mention that?
29) Migraine and headache awareness month is important to me:
Because I want to help others who might think they are alone. Also, as you can imagine, with head pain daily, Chronic Migraine has kind of become my *full time job*! Think of your full time jobs – you spend a LOT of time thinking about and discussing them, right? And as with any job, I want to do the best I can! 🙂
30) One more thing I’d like to say about Chronic Migraine:
Beside a cure, what I really wish for is to be able to forget about this disease. Just wake up and forget about having to think about head pain. A vacation from my brain! What I would do with that ‘vacation’? The possibilities are so exciting!
I’m a Headache/Migraine advocate and always happy to talk about it and help someone if I can! 🙂
***Edited: I wrote this piece last year (6/2015) for #MAM