30 Things About Lisa's Migraines

  1. My diagnosis is migraine without aura.
  1. My migraine attack frequency is about 2 to 3 times a month on average, which is a dream!
  1. I was diagnosed in December 2011, just before becoming chronic.
  1. My comorbid conditions include: I seem to fit a pattern of people who have fibromyalgia and IBS as comorbid conditions to migraine, though I am still searching and exploring other possibilities with my doctor.
  1. I take one medication, two vitamins and three supplements each day for preventionand up to four medications to treat an acute attackbut I don't take them all together. I also get Botox injections.
  1. My first migraine attack was when I was as a child, and my first bad migraine attack was as a freshman in college. I wondered if the intense headache I was feeling was a migraine, but figured migraines must be more painful. Despite these recurring with increasing frequency I didn’t get diagnosed until about 10 years later.
  1. My most disabling migraine symptoms are severe pain, brain fog, and fatigue. There is no “toughing it out” when at any of these symptoms are bad enough. The thing about the pain is, it's the type of pain that any movement will make much worse, so I must stay quiet and still.
  1. My strangest migraine symptoms are a visual disturbance caused by vertigo where objects rock back and forth, tingling and numbness down one side of my body, and uncontrollable crying. These are my strangest and scariest symptoms. Luckily since I've gotten more control on my migraines these are now more rare.
  1. My biggest migraine triggers are bright lights (sunlight, florescent lights, computer screens etc) and changes to my meal and sleep schedule, especially lack of sleep.
  1. I know a migraine attack is coming on when I have insatiable food cravings and my neck and head are starting to hurt.
  1. The most frustrating part about having a migraine attack is the fact that I must most often stop what I am doing. I am a creative, active person, and so I don’t like to stop doing the things I want to get done.
  1. During a migraine attack, I worry most about when it will end! I’ve had spells of week-long migraines and months of day in, day out migraine attacks, so I am always worried I will find myself in that situation again.
  1. When I think about migraine between attacks, I think they can’t possibly be as bad as I think they are, and I never think I’ll get another attack. I call this “pain-nesia.” I think that this is one reason why it took me so long to get a diagnosis.
  1. When I tell someone I have migraine, the response can range from a blank uninterested stare to deep empathy. It really seems to depend on the person’s personality and if they or someone close to them suffers from migraine.
  1. When someone tells me they have migraine, my heart aches for that person, but I’m glad to hear they have been diagnosed as so many are still yet to be diagnosed.
  1. When I see commercials about migraine treatments, I usually am suspicious about the validity of the treatment. I always research the option and talk to my doctor about it. Certain ads for over the counter medications make me cringe as I feel they can mislead migraineurs into thinking all they need to do to manage their condition is take a pill when an attack occurs, not to mention the ineffectiveness of these medications for so many and the risk of medication overuse headache.
  1. My best coping tools are headphones to either listen to soothing music or a podcast, or the iPad to curl up and watch something if I am well enough.
  1. I find comfort in being able to connect to others in the community and know I am not alone.
  1. I get angry when people say the word "migraine" as something trivial or an excuse to not have to do something. This makes me feel that migraine and headache is still very much misunderstood.
  1. I like it when people ask me questions about migraine in an open, non-judgmental way.
  1. Something kind someone can do for me during a migraine attack is let me be quiet and make sure I don't need something like an icepack, medication, or water. It is sometimes hard to move during an attack so getting me these things is a big help.
  1. The best thing(s) a doctor has ever said to me about migraine is that I have been converted back from chronic to episodic. That made me so happy!
  1. The hardest thing to accept about having migraine is that I will have periods of health followed by periods of disability. And that at any point I can go from completely functional to being very sick. The biggest hope in my mind is in research.
  1. Migraine has taught me to better care for my body and not take my health for granted.
  1. The quotation, motto, mantra, or scripture that gets me through an attack is that health is like the weather. There will be times of storm, but there is always sunshine sooner or later.
  1. If I could go back to the early days of my diagnosis, I would tell myself to take that imitrex as soon as the pain starts on December 24, 2011 in the morning. Yes, this seems oddly specific, but this pivotal moment in my life led to the worst attack of my life, which then snowballed into daily attacks. I would then say, if that imitrex doesn't work to hang in there, and it will get better.
  1. The people who support me most are my husband, my parents, and my friend, Amanda, who also knows the pain of chronic migraines.
  1. The thing I most wish people understood about migraine is how disabling it really is, how varied the symptoms can be from person to person, and attack to attack.
  1. Migraine and Headache Awareness Month is important to me because the lack of awareness around migraines is still very shocking. Even looking back on how little I knew when I was first diagnosed is scary! People really need to know about this common disabling disease!
  1. One more thing I’d like to say about life with migraine is migraines don't rule my life. I am outspoken about the condition because I feel that people need to be aware. But my life is about much more than a disease I suffer from. To me life is about the people I love and connect with and the experiences I have. Since I happen to experience migraines, it is an opportunity to do what I can to contribute to a better life for all those with migraines. Whatever small part I can play in that mission, I am glad.

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