I have chronic migraine that has never responded to treatment. I started getting migraines in early childhood, my first clear memory of a migraine attack is before I went to school and over time they have become more severe, chronic and stopped being ordinary. Attacks can last up to 2 weeks and can overlap with the postdrome phase bleeding into the aura of the next. I have a migraine more days than I do not and many are severe enough to be debilitating.
I have stopped trying different treatments after a decade of trying every prescription and non-prescription treatment, including a wide range of holistic therapies, diets, supplements and lifestyle management techniques. Trigger avoidance helps, but only so much as I don’t know if I have identified all triggers and it is impossible to avoid some triggers, like the weather. Lifestyle changes help – eating, sleeping and exercising regularly, sticking to a daily routine, avoid creating periods of stress (I get headaches as a result of stress as well as when stress lessens) all contribute to reduce the frequency and severity, but they remain chronic.
One of the most debilitating aspects of migraine for me is the aura. It is suppose to be a small portion of the attack, only lasting 30-45 minutes compared to the headache phase that can last up to 72 hours, but my aura symptoms can persist during the headache phase and even when it doesn’t, I can have up to 10 auras per week. It is like a wild roller coaster ride followed by a day or three or ten of severe excruciating pain that makes it impossible to sleep, eat, move or do much of anything.
Common aura symptoms
Aura symptoms are frightening, but thankfully they are temporary and I know that they are temporary. The experience is not always the same and at times can differ so widely that it takes me a while to realize that what is happening is an aura.
I get the common visual aura symptoms – visual disturbances with zig zag lines, flashing lights like look like a shower of bright shooting stars (I lost it the first time this happened thinking my retina might have detached), blind spots that are similar to looking at a bright light when closing your eyes, blurred vision, sometimes my vision can seem to be shaking as if the whole world is vibrating. Objects seem distorted, including my body and sometimes it feels as if different parts of my body are shrinking or growing.
These combine with suddenly debilitating fatigue, irritability, loss of appetite, feeling a bit light headed and dizzy, my brain feels fuzzy and words are a bit harder to come by and I yawn a lot. I get chills with a migraine and I am always very cold, even on the hottest summer day there is always a thick blanket nearby.
I don’t mind these, it happens more than once a week and at least they happen before the pain explodes in my head. I often wonder if it is my body’s way of preparing me for what’s coming, I dissociate and everything seems detached, almost like being high without the feel good emotions.
Vision loss, hearing loss and aphasia
I have had some pretty terrifying auras. I have totally lost my vision, I have lost vision in just one eye, I have lost my hearing (this is more common and less terrifying), I have had aphasia to the point where I couldn’t write, speak, read or comprehend language.
Language is weirdly affected for me. Sometimes ideas and comprehension is there, but language just isn’t. It feels as if the language part of my brain stops working completely and everything I experience is wordless.
Sometimes I can understand better than I can communicate whilst other times I write or talk without stopping but I can’t make sense of what other people are saying. I wrote more about what its like here 5 years ago during a particularly bad few months where I had short frequent migraines with 5-20 auras per week that at times lasted for the duration of the headache phase.
I can be hypersensitive to pain, it took a long time before a migraine specialist reassured me that what I experience is called allodynia. Everything hurts everywhere all the time. The wind touching my skin, anything touching my skin. It feels as if I have no skin. I find this very difficult to put up with because one of my OCD coping mechanisms is counting on my fingers or playing a piece of piano music on my lap. I can’t do either of those things because it makes me feel as if my fingertips are on fire. Already anxious during an aura, it really is unpleasant to also loose my most reliable coping mechanism for dealing with anxiety.
I have olfactory hallucinations. The most common is the smell of burning and seeing smoke wafting through the air. My husband has found me outside our house in my dressing gown sitting on the pavement because I thought our apartment was burning down. A neighbour had called him from work, they had attempted to talk to me but due to some speech and language impairment I could not communicate and just sat on the curb, obviously very upset.
I have auditory hallucinations. I hear footsteps, sounds and I hear water water running and will continuously look for the source. It doesn’t matter if someone tells me that I am imagining it, it just sounds too real to be in my head. So I go from tap to tap, pipe to pipe and have done crazy things like put my ear all along the wall, convinced that there are water in the walls leaking through the house. The aura stops, the sound vanishes and I feel very silly when it does
Confusion is a disabling symptom. It is usually mild and temporal. I can’t remember when I have taken my medication, eaten or slept. Time blurs. I have a memory of taking my medication but I am not sure if that was yesterday, an hour ago or me thinking about doing it tomorrow. I forget conversations, words and sometimes get confused about where I am, when it is and who I am. I feel trapped in a strange and incoherent dream.
Frequent urination and excessive thirst
Frequent urination is not an aura symptom that is well known or talked about much as far as I know. It can be a very inconvenient symptom during a long car journey or when out and about. With it, usually comes extreme thirst. I start drinking water by the bottle load in one go, which does seem to help with the dizziness but no matter how much I drink, I am still thirsty.
My worst aura is a combination of paraesthesia and muscle spasms. Strangely, it is usually triggered by car journeys over an hour (motion sickness is a migraine trigger for me, I assume its related). It starts in the fingertips of one hand, sometimes both and over the course of about 5 – 10 minutes progresses to encompass the whole one side of my body, rarely both. I have severe tingling, pins and needles and my muscles curl up into knots. My hand tightens to the point where I cannot open it and my nails cut into my skin and make my palms bleed. On very rare occasions, it is on both sides and sometimes it starts in my foot instead of my hand. If we keep driving, the symptoms continue, but if we stop and I lie down, they mostly clear up within the hour and the tingling lasts 2-3 hours.
The impact of auras on life
Auras are debilitating even when they only last 30 minutes. They occur suddenly with only a few minutes of warning and ramp up very quickly. They can also make a person feel pretty crazy. I have heard water and voices in the walls, footsteps down hallways and have called the fire and rescue services because I could smell burning and see the smoke. Aura symptoms are fleeting and ethereal, like mist that suddenly clears. It is hard to get a grasp on these ever changing, oddly familiar sensations that haunt me.
Migraine can be a very debilitating condition. It is one of the things that has had the biggest negative impact on my life. I can’t do anything when I have a severe migraine. I have the aura thrill ride and then days of throwing up and head pain that is so severe that I cannot think straight, I just curl up in a bundle and just cry, knowing that crying is probably making it hurt more. I lie still, as still as I possibly can, because the less I move, the less it hurts. I lie motionless in a dark room with no smells, no sounds, no light and wonder idly if I can install a sensory deprivation tank in my lounge.
As I lie in the dark, I think a favourite quote from Margaret Atwood’s Cat’s Eye: “It’s old light, and there’s not much of it. But it is enough to see by.” The aura is over and now there is just the dark, the quiet, the stillness and the pain.