Life Looks Different With Chronic Auras
I don’t see the world the way you do.
I live in an ever-changing prism of visual anomalies. They shift with the light, the time of day, my stress level, my stimulation level, smells, the weather, hormones, my diet. During daylight, it’s as though I’m looking through an old, warped pane of glass. I wear dark glasses, and the trees repeat themselves, translucent, across the lawn. In the dark, I watch faintly colored shapes drift across the blackness. When I close my eyes the lights and shadows of the room remain, a shimmering photo negative against my eyelids.
This is what they call a “persistent migraine aura,” and it’s been going strong for almost 5 years. This rare and complex chronic migraine is further complicated by a related condition called visual snow, which is something like watching the world on a poorly tuned antenna TV. On low symptom days, my world sparkles with millions of shifting pinpoint lights. The occasional black, apostrophe-shaped floater drifts by. The more bothersome symptoms, such as wavy lines like heat rising from pavement, blurred vision, double vision, and objects trailing along after I look away, intensify seemingly at random and linger for hours.
The worst days include scintillating scotoma and blind spots. These more severe symptoms usually last about 30-45 minutes before relaxing back into the usual sparkles and blurs. These acute attacks are always followed by a severe headache and a day or two of hazy, thick pain and fatigue. They often come in clusters of two or three episodes over a few days.
The headache never stops. Some days there’s mild pain, others I feel like my head is full of sand or rocks, sometimes there’s an ice pick in my brain for hours. I also get other migraine-related symptoms such as dizzy spells, anxiety, fatigue, numbness, allodynia, tinnitus, brain fog, and altered speech. These symptoms all come and go unpredictably, which makes my days unpredictable.
It makes ME unpredictable. It’s made it impossible to work full time, and difficult to work at all. I’ve had to be very creative. I have to take things very easy. I can’t push myself too hard or let myself get overwhelmed with stimuli. I can’t skip yoga, eat junk, forget vitamins, disrupt my routine. I actively relax, meditate regularly, take epsom salt baths. I go to acupuncture, drink valerian tea and kombucha, take huge daily doses of magnesium along with other supplements, and am working with my doctor to find a pharmaceutical solution.
And for all the careful trigger management and healthy lifestyle choices, I’ve really had no change. No doctor has been able to give me anything beyond “we don’t know much about this.” I still can’t predict what my body will do from minute to minute. My nervous system runs the show.
Making peace a priority
The best answers have been from eastern healers, who have taught me to be gentle with myself. This condition (along with my fibromyalgia and myofascial pain syndrome, which are often comorbid with migraine) is the result of a highly sensitive person under prolonged stress. I have had some serious challenges throughout my life. I started internalizing trauma very young. As an adult, I was in fight or flight mode for years. I had no place of peace, I never felt safe. The result is this haywire nervous system, these strange visual anomalies, pains, and neurological symptoms. It’s the result of not respecting the needs of my precious, exquisitely sensitive brain.
I don’t know if I’ll ever be “better.” I know I was finally forced to reprioritize until my peace started coming first—before anything else in life. I know I’m doing the right things and slowly improving my quality of life. But I have to accept that the persistent aura and visual snow—all the symptoms, really — may be with me forever. I remember what it was like to see the world clearly, to feel healthy and energetic and at my best. It’s important to accept that I may never feel that way again.
And yet, I may. As I said, my body is quite unpredictable.
Have you shared your migraine story with us yet?