I’ve shared some of my struggles on this post, from self-acceptance to identity formation. One of things that I have not yet been able to discuss, or have chosen to avoid, is my battle with migraines. Specifically, hemiplegic migraines.
I remember when I got my first migraine. I was in Saudi Arabia, sitting in Mrs. Thomas’ fifth grade class, working on a writing assignment. I got a funny feeling in my right arm and I was puzzled by it. I looked down, pencil in hand, and noticed that my hand was trembling. Then the strangest thing happened; the trembling was so intense that my pencil flew out of my hand. I got a sharp pain on the right side of my head. The rest is a blur.
From there onward, I would join about 12% of Americans in my battle with migraines, and .04% of the people who suffer from hemiplegic migraines specifically. My purpose in writing isn’t to walk you through the medical details or encourage you to make a donation to some foundation. Rather, I’d like to finally share what it has meant for me, to suffer from migraines.
Since I started having migraines at a young age, it is difficult to say how my life would have been without migraines–and even what my personality would be like. Migraines are the result of a complex neurological disorder so I am guessing there could be some correlation? What I do know is that it has had a less than positive effect on how (and when) I have been able to navigate through life as a ‘normal’ person.
I can say that on average, I have an episode 2-3 times a week. I can have an episode that lasts a few minutes or several days. My record migraine was in 2012, when I was hospitalized and out of work for 2 weeks with a migraine that refused to release me from its grip. Beyond frequency, and save a few triggers that I have identified, I am unable to predict when I will get a migraine. For sufferers reading, I have identified the following as triggers–some are strange, and it was a lengthy process of food monitoring and food/migraine journaling to determine these: raw onions, rice, red meat, too much sunlight and one more which I will discuss towards the end.
Having identified these triggers, one assumes that I avoid these foods at all costs. It’s a reasonable assumption and it is true for the most part. Despite my tenure with migraines, I am still very much embarrassed and/or unwilling to reveal my condition and say no to food items prepared by others. This is especially true when I am in Ghana. I have gone for long periods of time without eating meat or rice; unfortunately, this does not reduce frequency. What I do know is that if I do eat rice or meat, I will get a migraine. If I avoid any of the triggers, I am still guaranteed to get 2-3 migraine attacks in a week.
Not knowing when I will get a migraine, plus dealing with some embarassing symptoms (for me), has made me weary of planning too far ahead and general socializing. It was my father that made the observation that several hours before I get a migraine, I become very withdrawn. Maybe I am like those animals that sense an earthquake or tsunami before it hits. Initially, I refused to accept his observation; it made me weird and strange and I am already these things without a migraine.
Having hemiplegic migraines can feel like an out of body experience. When I have a migraine, I feel very disconnected from my body and from other people too. It’s been difficult having migraines and being in relationships, certainly. Striking a balance between wanting to be alone in the dark,in silence, with wanting to be caught in someone’s soothing embrace is not always achievable. Another person’s presence can actually be painful; the space they occupy can really push into me, any noise, movement, can be absolutely excruciating depending on the intensity of the episode. Admittedly, it’s a very lonely disease.
The final trigger is a change in environment. A change in environment means changes in air, air quality, temperatures, etc. This has gone really well for me as a Third Culture Kid (sarcasm)! My migraines started in Saudi Arabia. My first two years in Michigan were horrible where my health was concerned. And yes, I recognize the drastic difference in weather. I had one of my worst episodes in California but overall, I was in much better health while I was there.
The countries and states I have visited have impacted my condition differently. As much I can, I try not to plan for migraines; I try not to make decisions based on my condition. I have tried different medications for migraines, some have worked, others have not. It has been a learning process for me and my doctors, mainly neurologists.
The best way I can describe my migraines and my life? If I imagine for a moment that I loved PE, then the migraine would be equivalent to my PE teacher substituting me on and off a team. That non-participation in the game, is non-participation in life. I feel like I have frequently not participated in life and that has often made re-enterting the game (life) dull because I feel I have missed so much.
I don’t have a bottom line for this post. I also don’t really have an uplifting note to end on. But I am happy to talk to anyone about this; sufferer, non-sufferer, family of sufferer. One thing I can say is that people with migraines, especially frequent migraines, are often viewed as ‘faking it’ or ‘making something of nothing’ or the ‘it’s just a headache’ rhetoric. It is a serious issue, it is a debilitating condition and it can have long term effects on a person’s life and health. It’s not just ‘another headache’. Maybe the best thing you can do for a sufferer is to welcome them back after an episode, like I said, it gets really lonely on the other side.
Old conceptions about typical migraine patients. This point of view is no longer accepted.
^^^ Too bad–they might have been on to something in my case!
Hemiplegic migraine is a rare type of headache. It’s also one of the most serious and potentially debilitating migraine headaches.
What Is a Hemiplegic Migraine Headache?
There are several types of migraine. One major group is called migraine with aura. Hemiplegic migraine is a subtype of this group.
Migraine is a complex neurological disorder. It generally includes headaches, but not always. Before the actual headache pain of a migraine, you can have a host of other symptoms that serve as warning signs that a migraine is coming. These early symptoms, called auras, include temporary disturbances in one or more functions: vision, muscle control and body sensations, speech and language, hearing.
What Are the Symptoms of Hemiplegic Migraine Headaches?
Hemiplegic migraine symptoms often start in childhood. Then for some people, they disappear in adulthood. The stroke-like symptoms can range from worrisome to debilitating. Migraines are unpredictable and unique to each person. You may have a hemiplegic migraine headache with extreme pain and minor paralysis one month. Then, the next attack might bring extreme paralysis without much headache pain at all.
Symptoms of hemiplegic migraine include:
- Severe, throbbing pain, often on one side of your head
- A pins-and-needles feeling, often moving from your hand up your arm
- Numbness on one side of your body, which can include your arm, leg, and/or one side of your face
- Weakness or paralysis on one side of your body
- Loss of balance and coordination
- Visual aura, such as seeing zigzag lines, double vision, or blind spots
- Language difficulties, such as mixing words or trouble remembering a word
- Slurred speech
- Dizziness or vertigo
- Nausea and vomiting
- Extreme sensitivity to light, sound, and smell
- Decreased consciousness or coma
What Medical Tests Are Used to Diagnose Hemiplegic Migraine Headaches?
If you have any of the symptoms of hemiplegic migraine, see your doctor for a full evaluation. This is a serious form of migraine and many of its symptoms are also signs of a stroke. Tests to look for signs of a stroke may include a CT scan or MRI of the head. An exam may also include tests of the heart and blood vessels in your neck to evaluate whether your symptoms may be caused by blood clots forming in the heart or blood vessels in the neck.
Migraines and Headaches Center: Hemiplegic migraines
Image 3: http://www.susqneuro.com/publications/migraine/migraine.htm
Image 2: http://girlysworld.blogg.se/2011/november/utkast-nov-19-2011.html
Image 1: https://hyperbully.wordpress.com/2012/09/07/20-things-more-enjoyable-than-a-migraine/
2 thoughts on “On the subject of things I don’t want you to know”
I’ve heard comparing a migraine to a headache is like comparing The Grand Canyon to a hole. I only had them once in my life–brought on by magnesium from a complication in pregnancy, but I can’t imagine what you go through. You are brave and so strong.
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Thanks, dearlilyjune. The analogy is pretty accurate. There is a lack of understanding and misperceptions about migraines, by doctors and non-doctors alike.
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