My fingers are crossed that I’m in the postdrome of a debilitating five-day migraine. My entire head throbbed with sharp pain localized above my left eye, my left ear ached and burned, and my teeth were intensely sensitive. I was nauseated and dizzy. I’ve been massively fatigued, my limbs feel weighted down, my mind is barely coherent, my body aches. It was definitely a migraine and, yet, migraine’s most famous symptom, head pain, was only a level 4.
This is my new reality. The pain is much less severe than it once was — for which I’m endlessly grateful — but the migraine attacks still come frequently and can still be debilitating. People who have “silent” (acephalgic) migraines can attest to this, but applying it to my own experience is difficult. While non-headache symptoms have certainly been troublesome in my years with chronic migraine, the screaming head pain has always taken center stage. With pain demanding my attention, I didn’t realize just how much of a toll the other symptoms took. Not only am I regularly astonished by how severe the non-pain symptoms are, I’m so used to pain being my guide that I tend to dismiss the impact of any other symptom.
I keep thinking that migraine, with it’s wide-reaching and varied symptoms, is a weird illness, though I have to wonder if migraine isn’t weird, but that popular understanding of it is flawed. Despite patient advocates and migraineurs yelling, “Migraine isn’t just a headache!,” head pain is the symptom everyone associates with migraine. Even I, one of those people who gets that migraine is a neurological disorder with symptoms that affect the entire body, get hung up on the head pain part of the issue.
I wish we could rename migraine and start fresh. That we could disseminate the current knowledge about migraine without the historical baggage and misunderstanding. That we could focus not on the head pain part, but on the neurological, whole body impact. Maybe then the world of non-migraineurs would have a bit more respect for the major impact this illness can have on a person’s life. Maybe then I could have a little bit more empathy and sympathy for myself when I’m laid up and telling myself, “But this migraine’s not that bad.” Because, while the pain was mild, the rest of it was pretty miserable.
For years I have complained to my primary care providers that I have frequent earaches, but my ears always look perfect. I tell dentists that a few teeth are extremely sensitive to heat, cold and sweets, though the pain is inexplicably intermittent. I often wonder if I have a torn contact because one eye feels like there’s a grain of sand lodged in it. Yet I can never find an identifiable cause for the pain in my ears, teeth or eyes. At least, I couldn’t until my migraines turned from constant to cyclical. Turns out I only have the aforementioned symptoms when I have a migraine. Of course, when I had a migraine all the time, I had these symptoms all the time. Now that the migraines come and go, so do the other pains.
None of these particular complaints show up on the long list of little-known migraine symptoms, though they’ve come up in my conversations with other migraineurs. The majority of the world equates migraine with headache, but there’s so much more going on in this neurological disorder. If I could trade, I’d keep the pain if it meant I could get rid of the fatigue and fuzzy-headedness. (Not that I have any say in how the migraines behave.)
I wonder what other migraine symptoms have yet to be recognized. What are your unusual migraine symptoms? Do any of them bother you more than the pain part of the migraine?
The usual description of migraine includes visual aura, one-sided throbbing pain, nausea, and sensitivity to light and sound. There’s a lot more to it than that. The following information, which comes from my very favorite migraine book, Migraine: The Complete Guide, is a list of the other symptoms of migraine. It’s organized by the phase that the symptoms they occur in and by which part of the body is involved. I’ve made a few changes to the information from the book; most noticable is that I’ve collapsed the book’s sections on aura and prodrome into one.*
Prodrome (the period before the pain begins)
Visual (aka aura)
- a bright shape that spreads across the visual field of one eye and appears to block some or all of the vision; can be seen whether the eye is open or closed
- flashes of light and color
- wavy lines
- geometric patterns
- blurred vision
- partial loss of sight
- numbness or tingling on the face or upper extremities
- a sense that limbs are a distorted shape or size
- smelling odors that aren’t actually present (like natural gas or something burning)
- partial paralysis
- weakness or heaviness in the limbs on one side of the body
- difficulty finding words
- problems understanding spoken or written language
- mental confusion
- transient global amnesia (similar to amnesia that follows a concussion)
- food cravings (particularly for carbohydrates, candy and chocolate)
- stomach rumblings
- increased thirst
- bloating/fluid retention
- frequent urination
- mood changes
- high energy
- sensitivity to light and noise
- intolerance of being touched
- heightened sensitivity to odors
- intolerance of food odors
- loss of appetite
- cold, clammy hands and feet
- facial swelling
- goose bumps
- bloodshot eyes
- black circles around eyes
- water retention
- frequent urination
- frequent yawning
- nasal congestion
- runny nose
- difficulty concentrating
- changes in blood chemistry
- changes in blood pressure
- blood vessel dilation
- difficulty regulating temperature
- changes in heart rhythms
Postdrome (24 hour following headache)
- feeling of intense well-being
Having the variety of chronic daily headache that is caused my migraine, I’m not convinced that these symptoms only occur in their respective phases. I certainly have different symptoms that don’t seem to be connected to severe headache pain. It could be that people with CDH have trouble knowing when they are in a particular stage or that we experience the symptoms more frequently than in these rigidly defined phases. I also wonder if people who have been diagnosed with tension-type headache experience similar additional symptoms, particularly the cognitive ones. (Don’t take anything in this paragraph as fact — these are my vaguely informed, non-medical musings.)
So you’re not crazy, losing your mind or faking it. Perhaps it’s a link to send to those who question your illness.
*Some sources maintain that an aura only encompasses the visual changes that can happen before a migraine. Others, like this book, include sensory, motor, language and cognitive difficulties as part of aura. The more common approach is that aura is only visual, but one of many symptoms of prodrome.