Ok. Working from home I tend to be the shuttle for my kid and all his friends. Six more months and he’s legal to drive his friends around. Can’t wait. Today I was escorting his girlfriend to an eye doctor appointment. Back at my desk now, where I’ll be rooted until MAV forces me to do some other thing.
Brainstem (basilar) aura is a special kind of hell. I’ve talked about it in-depth in other places here, but not for a few months. From what I gather, the common aura is visual. Usually a scintillating scotoma or partial blindness. Brainstem aura kicks that up several notches.
I get lots of little aura symptoms all the time. So far, only one has forced me to show up at the ER. But I was totally unmedicated a year ago when it happened and had been exposed to a variety of major triggers for weeks on end. Fire season in the Pacific Northwest is a pain in the butt. This year I wore a mask 24/7 for weeks. A cute mask, but still.
The big whomper migraines begin with a visual disturbance (bright scintillating scotoma, blurred field of vision, tunnel vision and rotating barrel vision, and other moving hallucinations - usually birds flying in the perimeter of my vision) and progress to mild numbness in all extremities and/or loss of feeling on one side including the face, tongue, pallet and all of one arm, and a powerful outer body experience followed by muffled hearing, extreme mental confusion, nausea, incoherence, dizziness and/or vertigo, altered states of consciousness and exhaustion. It feels like a slow moving grand mal (tonic-clonic) seizure, which, unfortunately is also something I can speak to from experience. Oh, and my head hurts like I’ve been curb stomped.
For days after a big migraine I experience a lot of confusion, mental absence and exhaustion, mildly slurred speech, nominal aphasia, light, olfactory and sound sensitivity, nausea, dizziness, fatigue, IBS and a persistent tension headache. My neck usually feels like I’ve been in a major car accident. Migraine can pull my atlas out of alignment and aggravates my already advanced TMJD. Because I have an endocrine disorder (PCOS), my blood sugar and insulin do a sort of flamenco dance that just exacerbates all the migraine issues. (I expect both PCOS and MAV have a genetic component based on a common disorder, probably on the X chromosome. Migraine is genetic. PCOS probably begins spontaneously in response to epigenetic factors and then becomes genetic as the genes get passed down.)
Between big migraines I get all sorts of mild to severe issues - visual snow that sometimes sparkles, halos, refractions, moving colored lights, rotating barrel vision, the birds or things dropping vertically, auditory and olfactory hallucinations, numbness in my right hand and/or parts of my face, full ears, tinnitus, sinusitis, constant IBS, headaches, dizziness, vertigo, motion sensitivity, sensory sensitivity (visual, auditory, olfactory, touch), brain zaps, sometimes my core temperature likes to shift up or down leaving me feverish or freezing, my skin will crawl, itch or get sensitive, palpitations, air gulping/yawning, fatigue, mental confusion - you know, CNS stuff at the very root level. The brainstem is a very old, very primitive part of the brain that controls autonomic functions. Chemical and electrical misfires there can affect anywhere in the body. Effexor has lessened but not eliminated most of these. Though it added weight gain, nightmares and something that feels a lot like my brain has the hiccups. Weird.
I have vestibular paroxysmia, too, from a vascular loop on the left auditory nerve, but I know exactly what movement to avoid so that I don’t get quick spins.
While yesterday was a 40% day, most days are in the 85% range. Exercise helps. I can take a 60% day and turn it into a 90% day if I run a long way, provided I get thru the nausea, headache and imbalance of the first 20 minutes. Effexor and ketosis got me from about 20% to 80-85%. I’m not complaining. I’m happy with where I am at this point. Though, sometimes I still get surprised when someone else reacts to something I was just sure was a hallucination. I don’t know, sparkling stars and flying birds are kind of pretty. It’s not all that bad, if you accept if for what it is and then resolve to sing and dance and play - and always push your boundaries.