Hi Lauren,
Right after James said no kitchen sinks, I’m just going to go ahead and respond to both of your posts.
I’m pretty much 24/7 aura. Have been for several years (sorry). These days it’s a matter of degree. I have several always symptoms and a revolving cast of add ons. I’ve forgotten what it’s like not to see floaters, fireworks and starbursts all superimposed on a matrix of visual snow. It’s sort of pretty and it’s transparent enough except when driving after dark in the rain. At night sometimes I think I could put my hand out and push through it and find it viscous. Those are the times when my scalp is tingling and I feel suspended above the ground. Aura for me can be quite the trip. Not much fun at work, though. Or the grocery store. Or wherever.
My mom tells me floaters are crystalline structures floating about in your aqueous humor. Her cataract doctor blasted them with a laser and got rid of hers. So there’s that.
As for the more transient and less transcendental weirdness, I live within a tempest but mostly have found my sea legs, the world often likes to shimmer and shimmy, the walls dance and breath, and my vision turns 2d in hyper real colors.This isn’t trippy so much as distracting. My hand and my mouth go numb or my teeth throb. I shiver. My eyes dilate differently. Then there are the ever present light sensitivity and the mercifully less often sound, motion and odor intolerance. So many random weird things. Often I’ll get a headache but only moderate. For me a straight migraine is one without days of rolling waves of aura but is instead an unannounced ice pick into my brain with my skull in a vice. If a migraine is really going to dog me, I prefer the pain kind over the crazy aura kind because I can think and function through pain. The other kind is more along the veins of a Hunter S Thompson acid trip through Vegas.
Don’t freak out at this point. I’m a special case among special cases with a history of seizures and brain stem auras plus a shortlist of other major autoimmune disorders. I’m hard to treat. Most folks find a migraine prophylactic that works for them. My neurologist says treating the migraine is treating the vestibular too. I have definitely found that to be true.
I’ve failed a lot of migraine drugs, sometimes spectacularly. None of the first tier rescue meds did much. Some of the second tier rescue meds helped. I think I noted you were on the barbiturates/NSAID/caffeine mix. Me too only with acetaminophen/paracetamol instead of the NSAID. I like compazine, Benadryl and amitriptyline for rescue. All of those are now my back up strategy if Ubrelvy fails. Ubrelvy is one of the CGRP drugs and the final tier of rescue meds. I max out my allotment a couple times a month but unlike the other meds, it’s non-sedating and can turn aura off in an hour. I can go from surrealist painting to clear eyed and focused for the rest of the day with just a mild headache.
My other saving grace is indeed Botox. Without Botox MAV dials it up to 12 and I’m essentially nonfunctional and legitimately disabled. With Botox I work a full time job as a department director and manage a household of five. I work out several times a week. Why does paralyzing the trigeminal nerve mean I step off the heaving deck of a boat and stop being numb and foggy and partially blind? I have zero clue. I don’t care. Botox handed me a huge portion of my life back. If God forbid it ever fails I’ll push for one of the CGRP injections.
Botox and the CGRP drugs are miraculous for some and not anything for others. Fortunately we have a robust list of prophylactic drugs to choose from. You have to fail three other classes of drugs in the US to qualify for the use of either Botox or the CGRPs. Most people don’t take that many tries to find a medication that works for them. My wish for you is you’ll be one of them. But if not, there’s always hope.
Emily