30 Things about my life with migraine
- My diagnoses are:
Like many migraine patients, when I finally saw a true specialist, we discovered that I had more than one headache disorder. At this time, I have been diagnosed with migraine with aura, chronic migraine, and episodic cluster headaches.
- My migraine attack frequency is:
For the last 6 months, I have averaged 3 migraine attacks per month. Cluster headaches are currently in remission. Without proper treatment, I would experience 15-20 migraine attacks each month, plus 1-4 cluster attacks per week.
- I was diagnosed in:
In 1975 I was diagnosed with common migraine (now called migraine without aura). This diagnosis was confirmed in 1986. By 1995, my diagnosis had changed to chronic migraine. It has remained unchanged ever since. In 2000 I was diagnosed with chronic cluster headache. In 2012 it was confirmed that I actually did experience aura, so the diagnosis was changed to migraine with aura. Just in the last year that diagnosis was changed to episodic cluster headache.
- My comorbid conditions include:
Like many migraine patients, I have collected several comorbid conditions, too. Over time, I have developed fibromyalgia, sleep apnea, restless leg syndrome, acid reflux, and depression.
- I take:
Three times a day I pull out a pre-filled medicine tray to take six different medications and supplements. I must take multiple doses of all but two of these medicines. Plus, I have seven medications and a large overnight bag full of comfort measures to treat an acute attack.
- My first migraine attack was:
It was 1975. I was 5 years old and had just started kindergarten. I don’t remember that first attack, yet my earliest memories are of migraine. I clearly remember crying from the pain yet unable to swallow pills. My mom would crush baby aspirin, mix it with warm water, and offer it to me on a spoon. It tasted horrible, so my Dad would hold me and give me encouragement. It took both of them to help keep me calm enough to take the medicine and relax so I could finally sleep it off.
- My diagnoses are:
- My most disabling migraine symptoms are:
I am more disabled by photophobia and phonophobia than by the pain. During an attack, I hide in the dark. Even whispers sound like shouting so I usually refuse to talk, preferring to text instead. I often use ear plugs and dark glasses.
- My strangest migraine symptoms are:
I get this mental heaviness. It’s like my brain slows to a crawl. I can’t think or speak without great effort. Any activity requiring mental functioning becomes impossible. Even the simplest instructions become impossible to comprehend.
- My biggest migraine triggers are:
Thunderstorms, flashing lights, and lack of sleep will set one off nearly every time.
- I know a migraine attack is coming on when:
I start to yawn, get ringing in my ears, or get moody or cry a lot.
- The most frustrating part about having a migraine attack is:
It’s hard to wait for the right time to take abortive medicine when I know what’s coming. Too soon and it won’t work at all – wasting the limited number of pills allowed by insurance. Too late and it won’t work either. Plus, then I have to take much stronger medicine, injections, or seek help at the Emergency Room.
- During a migraine attack, I worry most about:
I think about all the things that won’t get done because I am out of commission with an attack. I wonder how long I will be sick and how long it will take me to catch up once I feel better.
- When I think about migraine between attacks, I think:
I wonder when to expect the next one, but not in a bad way. I like to count the days between attacks and try to beat my record each time. It’s a neurological game that I enjoy playing and I’m only competing with myself.
- When I tell someone I have migraine, the response is usually:
“Yeah, I get those, too,” or “I know so-and-so used to get those, but she/he did ________ and now they don’t have a problem anymore.” It’s infuriating because most of the time the person has no idea how frequent or severe my attacks get and their “cures” are either ridiculous or something I’ve already tried that’s failed. These comments make me feel like I don’t have the right to be disabled by migraine.
- When someone tells me they have migraine, I think:
“Really?” Then I start gently questioning them. If I find that the person believes too many myths or isn’t getting good treatment, I step in to “educator” role to enlighten them. Too many people have absolutely no idea what migraine really is. I know one person who thought she had chronic migraine for years. When she finally saw a real headache specialist, it turned out that she had occipital neuralgia instead. The treatment was very different. With the right diagnosis she is finally feeling better. Her GP didn’t know enough about headache disorders to ask the right questions. If she had continued to seek treatment only from him, she would still be suffering and telling others she had migraine.
- When I see commercials about migraine treatments, I think:
I cringe. Then I start my rant. They make it appear that migraine is easy to manage with a simple dose of OTC medicine. Those commercials make a mockery of everyone who cannot be helped by even some of the stronger prescription medications let alone some OTC pill. They also fail to warn patients that taking OTC pain medicines more than 3 times a week increases the risk of medication overuse headache which results in nearly-daily headaches and can only be solved by stopping all pain medicines. It’s a common, painful, and completely preventable condition.
- My best coping tools are:
I don’t go anywhere without a roll-on tube of an essential oil blend, Tiger Balm, a portable TENS unit, my Theraspecs glasses, and an ice pack.
- I find comfort in:
It helps knowing that I always have a back-up plan. Having rescue treatments at home help me avoid the ER. I also have a doctor who won’t hesitate to hospitalize me for aggressive infusion therapy should the attacks ever get out of control.
- I get angry when people say:
“It must be nice to stay at home all day, sleep in, and do whatever you want.” No, it isn’t nice. I get stir-crazy, feel like the day was wasted, and I don’t get to do what I want. My symptoms keep me from engaging in my passions. Plus, I loved my job. I miss it and wish I could do it again. It must be nice to actually be able to do the things you love, get outside on a beautiful day, and wake refreshed and ready to take on the day.
- I like it when people say:
“I had no idea migraine was like that. Thanks for sharing.” At heart, I am an educator, so it makes my day when I can help someone think differently or learn something new about migraine and other headache disorders.
- Something kind someone can do for me during a migraine attack is:
The best thing someone can do is to take care of something I was going to do so I don’t have to worry about catching up when I feel better. That’s the biggest stressor I have with every single attack.
- The best thing(s) a doctor has ever said to me about migraine is:
“I will not give up on you.”
- The hardest thing to accept about having migraine is:
There is no cure. I will always be vulnerable to an attack.
- Migraine has taught me:
I have learned to listen to my body and do what it asks of me. I must slow down. I must take it easy. That hasn’t come easy, but it’s necessary if I want to live as healthy as possible.
- The quotation, motto, mantra, or scripture that gets me through an attack is: In the middle of the worst attacks (usually clusters) I do best if I have a bit of rebellion stirring in me. The lyrics to Skillet’s “Not Gonna Die Tonight” are good inspiration:
This is how it feels when you take your life back
This is how it feels when you finally fight back
When life pushes me I push harder
What doesn’t kill me makes me stronger……No, not gonna die tonight
We’re gonna stand and fight forever.
(Don’t close your eyes)
No, not gonna die tonight
We're gonna fight for us together
No, we’re not gonna die tonight
- If I could go back to the early days of my diagnosis, I would tell myself:
“Just hang on until 1993. Imitrex will change your life. Then get to the university’s headache clinic. It’s worth the inconvenience to see a specialist. The minute Botox is available, raise hell until you finally get approved for treatment. Do not take ‘no’ for an answer!”
- The people who support me most are:
My best supporters are my husband and children. My parents are huge supporters, too. They offered more practical support when the kids were younger and we lived close.
- The thing I most wish people understood about migraine is:
It’s so much more than “just a headache”. I wish it were only a headache. I can’t think right or communicate. I can’t tolerate any amount of light or sound so conversations are impossible. My ears ring, my head spins, my stomach turns. When it all stops, I still need several hours to recover before I can function again. The whole process wipes me out.
- Migraine and Headache Awareness Month is important to me because:
For most of my life I’ve felt the stigma of migraine. I felt alone and misunderstood, as though somehow I brought this misery on myself. I don’t want one more person to ever feel that way again. I can use my voice and my skills to let others know the truth: they are not alone and their experiences are very real.
- One more thing I’d like to say about life with migraine is:
After fighting for 38 years, I was finally left with no other option except to file for disability benefits. I simply could not work anymore. I can’t help thinking that if I had received aggressive, appropriate treatment when the attacks first started, I might be enjoying a successful private practice instead. Please, don’t wait. Don’t put it off. Get good migraine treatment today so that your tomorrows will be bright and unlimited.
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