My Auras and How I Cope
To anyone who tries to empathize with me by focusing on my migraine pain, I always tell the brutal truth. It is actually my aura symptoms which are more distressing and disabling. I have what could be called “basilar aura”, however, I am not diagnosed with them officially since then I would not be allowed to be prescribed triptans. My neurologist instead calls them “dramatic auras” which is a great term for them, since they are very dramatic. I started getting these aura symptoms when I started getting migraines at age 13. However, as I have gotten older they’ve gotten progressively worse. As you will see there can be way more to migraine aura than visual disturbances.
I should also add that I have auras that do not manifest into migraines. Which is often super annoying since abortives don’t do anything for my aura until the headache phase starts (this is actually typical with aura and migraine abortives). My auras also tend to be persistent through a migraine attack, though thankfully usually in a transient way. Also, thankfully I rarely get all of these aura symptoms each time.
Thanks to Botox, Amitriptyline, a ton of vitamins, and lifestyle changes the impact of my auras have thankfully lessened to an extent that while often a total ditz I can still function, mostly. These are my aura symptoms in no particular order, and how I cope with them.
Visual changes are the classic migraine aura symptom. Mine tend to involve peripheral vision loss on one or both sides (these days it tends to be both). I also sometimes get flickers in my vision like a lightening flash, or like a dying florescent bulb. I can also get bubbles in my vision.
How I cope: I do my best to be aware that if I am having other aura symptoms I have probably lost vision. I test to see what’s missing, if it’s bilateral and I need to drive I make good use of my mirrors. If it’s one side I will tilt my head to balance out my visual field. The flashes and bubbles I try to ignore.
Language processing issues
At worst I develop full blown aphasia where huge chunks if not all of my speech is missing. These days I usually use incorrect words, or have an extremely difficult time writing. Overall I love that my new job placement still uses paper but when I have bad aura the amount of scratch outs, corrections, and the overall quality of my handwriting is a bit embarrassing…
How I cope: I am lucky and usually if my speech is impacted I can still write, and if my ability to write is impacted I can still talk. Thankfully since medication and botox I don’t lose a lot of speech, and my therapeutic style often involves me allowing for pauses and thinking carefully about what I say so this tends to not be noticeable when I’m in session. I also make time throughout the week to work on notes in case I can’t complete them same day due to aura.
Beyond loosing my peripheral vision, my perception of vision tends to get skewed. Everything appears flattened out and equally bright. Which makes navigating stores, walking to places, etc particularly difficult.
How I cope: Thankfully I’ve had this since before I learned how to drive, and exclusively drive my own car so I have cues that let me know distance from other cars, etc. If this is happening during an aura, however, going somewhere new is precarious if not impossible.
I do what I can to take it slow and be particularly attentive to maps, signs, etc that can help me figure out where I am. In stores and when walking I have learned to not get embarrassed asking where something is, since often when I ask it ends up being right in front of me.
If I am out with my boyfriend we walked with out arms interlocked until I am able to map out the space where we are. I try to remember routes to important places like the bathroom, where we’re sitting, etc.
Thankfully this aura symptom is milder now, and often short so it doesn’t impact me as much.
I have a very poor perception of time almost universally during migraine auras. This is kind of relaxing if I’m in bad traffic, or in a long meeting since for me the difference between minutes and hours is non-existent. However, keeping to a schedule is stressful and given other symptoms it is hard to remember to check clocks, or remember what time it was last time I checked, or that I had just checked the time.
How I cope: I keep my car clock up to date, and have trained myself to look at clocks often, my cell phone, wall clocks, etc. I fully appreciate the silver lining that when I’m running behind, or stuck in traffic that I don’t have the mental faculties to feel the passage of that time.
I tend to have experiences of depersonalization (that I am not in my body, or locked in my body) or derealization (that the reality I am experiencing is not real) this can either be really pleasant, like a noetic experience, or very distressing.
How I cope: If I’m alone I simply let it ride, especially if it is the pleasant variety of dissociation, and just enjoy my trip to wonderland. If the dissociation is taking on a negative emotional tone I try to play music I like, or redirect my thinking. If I need to be with people the same grounding techniques that help with PTSD related dissociation help some. Even if I feel displaced coping skills at least allow me to focus on the conversation, traffic, etc.
Poor short term memory, oh and memory recall in general
I will often open my bag, and have no idea what I was looking for. I also often forget things. If I am asked for information that I normally would know, half the time I can’t remember.
How I cope: I’ve gotten much better about writing things down. For the first time in my life I’m keeping an accurate day planner. I also with work related stuff make sure I note important dates and plans in my notes, so I can go back and read them (and the bonus is that my documentation is super thorough).
Due to having Migraine Associated Vertigo and vestibular damage I often am dizzy or have a few seconds of the spins here or there. However, during a full blown MAV attack most changes in lighting, direction changes, and just about any motion from me or things in my field of vision causes shakiness in my vision, full blown vertigo, and/or severe dizziness.
How I cope: When I have full rotary vertigo I have learned to feel with my feet the edges walls and hallways, and when driving I try to stay in the right hand lane so I can feel the grooves or the edge of the road through my tires. And obviously I get off the road as soon as possible.
I’ve learned to walk like I’m balancing something on my head when my threshold for MAV triggers is especially low. I’ll also feel for walls, etc. I also turn my head slow and try to avoid bending over. The dizziness I have a lot of the time regardless of whether or not I’m having a migraine. I have built my confidence and have adapted through practice.
If I am at work and I get bad vertigo I take 12.5 to 25mg of meclizine which stabilizes my vision enough that I can navigate the world. If I am home I take 5mg of Valium.
I’ve had tinnitus in both ears due to severe ear infections which caused some hearing loss in childhood. However, since developing MAV I often get severe ringing in my left ear now with migraines. My left side is my dominant migraine side.
How I cope: I am pretty good at tuning out tinnitus. Putting on a TV show when at home and focusing my attention on that really helps when I am home. When driving I try to immerse myself in NPR stories, and music when it’s not making me ill. It doesn’t tend to bother me when working since my job involves constantly interacting with people which helps redirect my focus.
When trying to sleep, I sleep with my right ear on the pillow. When the left is made to be the dominant listening ear (I always have radio or boring TV on when I go to sleep) I find it makes the ringing easier to ignore. If it is super bad, I take Valium 5mg so I can sleep.
Loss of Coordination
My coordination always has some deterioration before a migraine. Just the other week I was going for my emergency pillbox in my purse. I somehow managed to turn on the music on my phone, drop tons of stuff, including the phone, and then it continued to have difficulty getting the pills out of my pillbox. It’s like I develop a super gravity field where everything around me ends up falling to the floor.
At it’s worse I develop involuntary muscle movements, really fun when it’s in my fingers, typing essentially becomes impossible as my fingers just randomly hit keys. Thankfully this only happened during the worst of my status migraines, and since Amitriptyline and Botox that has not been an issue.
How I cope: I almost exclusively drink out of a water bottle with a spout. This keeps me from constantly knocking over cups. I also have a prepped emergency pillbox in fairly easy reach. I unwrap my Maxalt ahead of time, and put everything I might need in there so I am not digging and failing to find multiple bottles, nonetheless open them. If I lose coordination I am most definitely entering a migraine attack, and the Maxalt treats it so long as I take it in the window when the migraine starts (usually 5-10 minutes after becoming a total clutz).
Changes in Consciousness and/or Cognition
Thankfully with medication this isn’t as bad as it used to be. My migraine auras can often involve severe confusion and thought blocking, essentially try as I might I can’t think much or recall things, at all. One of the more hilarious episodes I got lost in my own office building. These days it tends to be more like brain fog, often with severe fatigue and tiredness. I have also fainted a few times from this migraine aura symptom. This when I am working or out of the house is my most distressing aura symptom.
How I cope: I rely on routine, and notes. If I haven’t taken my abortives yet I have trained myself to keep trying to remind myself to do so. With the fatigue I do what I can to drink tons of water and will drink an extra cup of coffee. When driving I’ll try to put on music and sing in the car, etc, to wake up.
Worst case scenario I take a short nap, and while I’m often still extremely tired afterwards, my mind is at least a bit clearer. At work I will set a timer on my phone and sleep in the back seat of my car. Usually with news radio on so I have something to focus on and help with bringing me back when it’s time to wake up.
Thankfully this doesn’t happen all the time, but I have developed tingling and sometimes numbness in parts of my body. Thankfully most of the time now it is bilateral so doctors no longer freak out thinking I’m having a stroke whenever it happens. It tends to be in my fingers and/or feet. Though it can also occur in my face, usually that only impacts one side. Since medication it’s usually just tingling (and even that is rare) and I don’t tend to lose sensation.
How I cope: I check to make sure there isn’t a legitimate circulation issue that could be causing a limb (or more often limbs) to fall asleep. Once that’s confirmed I do what I can to ignore it.
During barometric migraines (which is most of my migraines) I can feel, and often see and/or hear the weather in my head. This is very useful for predicting migraines, but can also be very distracting since it’s hard to ignore.
How I cope: I use my weather forecasting superpower to my advantage whenever possible. It has saved me on numerous occasions. I also try to not get locked into looking at the clouds, because with my cognitive issues during an aura I just end up in a feedback loop.
My superpower of course is a lot of the inspiration for the design of this site, and daily brings me closer to, and more in love with storms.