Dear healthy friends,
I wish I could be as carefree as you, to go about my day without a radar pinging all the potential triggers that could set off a migraine attack. You say, “Just relax. You’ll feel better,” when what you mean is, “Stop being a killjoy and just ignore all those so-called triggers.” That’s like telling a diabetic to stop checking their glucose and gorge on cookies. I have to avoid certain things in order to enjoy life without constant attacks. If you want me to spend time with you, then I need you to be sensitive to my trigger exposure. If I say I can’t tolerate bright lights, loud music, or strong smells, then it’s not a preference. I really do have to avoid these things to stay healthy.
When I get a migraine attack, it’s a lot more than just a headache. The headache I do experience is so severe and so stubborn, Tylenol or Advil just won’t touch it. Believe me, I’ve tried. Perhaps you’ve seen the Excedrin commercials with Jordin Sparks. That commercial makes it seem like all migraines can be treated quickly and easily with just a couple of pills. Oh, how I wish that were true for me! You see, some people, like Ms. Sparks, are able to control their migraines with OTC medications. Many more are not. Everyone is different. Perhaps if there had been proper treatment available when I first experienced migraine 40 years ago, then I wouldn’t be so sick today.
Have you ever had a concussion? Remember that headache, nausea, and disorientation? That’s probably the closest most people come to experiencing a migraine. Doctors probably gave you strong narcotic painkillers to dull the pain. Now imagine that happens to you 2-3 times a week. It’s not safe to take narcotic painkillers that often. So we have to find other ways to manage that level of pain.
You’ve probably heard about some of the other symptoms of migraine, too. Without first-hand experience, they are difficult to understand. First, you should know that these symptoms make their appearance up to 24 hours before the onset of pain and last up to 24 hours after the pain has ended. Given that the pain can last from 4 to 72 hours, our debilitating symptoms from a single attack can last up to 5 days even if we take medication.
All light appears significantly brighter, as though a spotlight is shining in our eyes. The light actually hurts — and not just from squinting. Sometimes I don’t realize how much the light is bothering me until someone turns it off. Then my body relaxes and I let out an involuntary sigh of relief. It feels so good to be in the darkness! Even when I am not in the middle of a migraine, bright lights can trigger an attack. I wear sunglasses even in department stores because the lights are so bright.
Sounds are magnified. Even the sound of people talking at a normal volume can sound like everyone has a megaphone pointed right at me. Music, television, traffic sounds, even the sound of the air conditioner, washing machine, or dishwasher can be unbearable. The worst for me is the human voice. When I am migraining, I am constantly asking my family to whisper and turn down the volume on any music or TV program. Sometimes it’s just easier to wear earplugs, but even that does very little to help.
This one varies for me. I can either be extra sensitive to the point that I smell things no one else can smell. Or I can have a dulled sense of smell, unable to detect even noxious odors. Smell sensitivity is more of a trigger for me than a symptom. Any kind of perfume, chemical smell, and even some natural smells (like mold or cut grass) can set off an attack. I avoid perfume counters and hold my breath when walking into or out of a building just in case someone is finishing a cigarette.
Nausea & Vomiting
This one doesn’t get me too often. I am usually able to abort an attack before it gets far enough along to trigger nausea. However, once the vomiting starts, it can go on for hours without relief. Most of the time I continue to vomit long past emptying my stomach contents. I just vomit up stomach acid and the small amounts of liquid I sip. It is very painful and distressing. Prior to vomiting, I get restless and agitated, unable to sit still. My skin is so pale and clammy, emergency personnel have assumed I was going into diabetic shock even though my glucose levels were normal. I also sweat profusely, yet have terrible chills. Nothing eases my discomfort until I finally vomit. It is such a relief until it starts all over again.
My ears ring so loudly that it interferes with my ability to hear what people are saying. I know that an attack is pending when I start to hear the ringing. Even if I start to feel better, if my ears are still ringing, I know that the attacks are not finished. Once the attacks are over, the ringing stops.
I feel like I am spinning constantly. My depth perception is off, so I have to go slow and hold on to furniture as I make my way around the house to avoid walking into walls or falling down stairs. When the vertigo starts, driving is impossible. Even riding in a car becomes intolerable. Seabands help a bit, as does Benadryl. Then I just get sleepy and still feel imbalanced. Once the vertigo starts, it can take weeks to subside.
Migraines wear me out! As early as 2 days before the pain starts, I will start yawning uncontrollably even though I am not sleepy. However, once the real thing hits, all I want to do is sleep. Even when the pain subsides, I am exhausted, drained of all energy. It can take me days to regain what little strength I usually have. It’s not just being tired or sleepy. My muscles are weaker, too. Have you heard the expression, “run over by a MAC truck”? That’s how I feel after the pain is gone. It’s part of the “hangover” all migraineurs get. To expect us to jump back into work or play just because our pain is gone is unrealistic.
Because neurotransmitter levels jump up and down throughout an attack, it takes a toll on my mood. I may start off a little grouchy or tearful and bounce through dozens of emotions. Common mood changes for me include irritability, sadness, nostalgia, agitation, fear, shame, anger, apathy, and so many more.
One sure way to know a migraine is on its way is for me to get a sudden case of “the stupids”. My normally sharp brain gets stuck in “neutral”. I can’t write, think, or speak with any amount of eloquence. I forget words mid-sentence. Loved ones have to repeat things 3 or 4 times before I finally understand. I am unable to tolerate any work that involves brain power. When I still worked for a living, this one symptom was responsible for almost every instance of poor work performance. I just couldn’t think or express myself.
Have you ever heard a migraineur say, “I hurt all over”? That’s allodynia. It can make our scalp and hair hurt. Every pore of our skin aches and may feel like we have a bad sunburn. Normal touch is terribly painful. The pain of a migraine doesn’t just affect our heads. It is a whole body, whole nervous system experience.
Difficulty forming words
Some migraineurs slur their words or have trouble speaking because of temporary one-sided paralysis of the facial muscles. Others have difficulty speaking because of “brain fog” that prevents us from remembering simple words or concepts.
Clumsiness & slowed reflexes
Our entire nervous system is affected by a migraine. So naturally, our reflexes slow down. This is why most of us are unable to drive during an attack — not because of the pain. We move slower, drop things, trip over our own feet, and certainly cannot be trusted with heavy machinery.
Tingling & Numbness
Our lips, tongue, fingers, and toes may become numb or tingle. We can have reduced sensation in our extremeties.
Some of us have hemiplegic migraines, which involve stroke-like symptoms such as one-side paralysis. In these cases, one side of the face may droop and even spread down the arm and leg. These symptoms resolve once the attack is over, but can be quite frightening to anyone who is around during the attack.
So the next time you give your migraineur friend a hard time, think about what he or she has just been through. If you had to experience all of this, plus a really nasty headache, wouldn’t you do everything you could to avoid the next one? Trigger avoidance isn’t a personal preference. It is as essential to us as breathing.