It’s been a while since I’ve posted. Frankly, I felt a little guilty since my first medication therapy worked well, I got a diagnosis within 6 months of symptoms starting, and supplements work for me, too. I just completed my one year neuro appointment last week, so it seemed like a good time to post again.
Medication: 80 mg duloxetine, daily
Supplements: 800 mgs magnesium, 100 mg ubiquinol (CoQ10) – doc recommended B2 which I plan to add
Overall evaluation: I am much better and beginning to trust my brain to work again. Medication starts the healing process and time continues it. The elation I felt last July just a couple months after starting meds has matured into a more realistic understanding that VM is being managed, not cured. My neuro did not suggest I stop taking medication! Even if I get no better than I am now, that would be fine. I am both hopeful and grateful.
Reality Check: I can still work, I can handle new projects again, and I can handle chaos (I’ve been promoted to junior admin status in my dept at a large U.S. university, so chaos is the norm, especially this election cycle😒). However, I fatigue quickly and if I push myself hard for a few days in a row, I crash badly enough to induce 2-3 days of lost productivity. I rarely can focus deeply on a project for more than 3 hours. I often wish people would just leave me the F alone. (Okay, that was true before VM but the filter between my mouth and brain is made more porous when I’m fatigued.) Computer work is the enemy, and I’m on a computer all day. I know I have to incorporate breaks, but I haven’t figured out how.
The biggest reality that I’m still adjusting to is memory dysfunction – it is a rare day when I trust my episodic memory. Rare enough that I still notice when it works, and feel so relieved. Most days, I still have to rely on techniques used with dementia patients: always put things back where they belong, move through routines more intentionally so I remember if I’ve done something (like take meds🫤), read and re-read messages for errors that I no longer catch automatically, write lists of tasks, stop and ‘map’ where I’ve parked the car, check that I actually sent the message that I wrote in the first place, etc. I simply cannot trust my brain to keep all these things on the mental merry-go-round anymore. I am incredibly prone to distraction. All of this is relative, of course, and perhaps not quite real: it is the memory of my sense of self pre-VM and now. Other people say they don’t see it, and a few seem relieved that I now make stupid mistakes (like forgetting to add the names field to a form). I am not so amused. This is the reality that upsets me the most.
VM Symptoms: well-controlled, but not absent. Sufficient stress, sleep loss, and barometric changes will trigger VM episodes, though relatively mild. Symptoms include the basic VM: marshmallow floor, sensations of spinning or rocking, sliding (this is what I call it when it feels like I’m on a moving sidewalk), nausea with computer work (especially scrolling), aphasia-type symptoms, irritability/anxiety, headache, and fatigue.
Hyperacusis and tinnitus are worse, not better. I brought up the tinnitus article that @turnitaround posted a couple weeks ago and the neuro had not heard of it. If gepants actually reduce these symptoms, then I will beg for a maintenance dose! Noise is my biggest trigger, and teaching in buildings made of concrete, filled with things that buzz and hum all day produces an aggravated brain by the end of the day.
Barometric pressure has turned out to be especially problematic, triggering not only VM but monster migraine headaches as a storm is approaching. I almost took a gepant a couple of weeks ago during Hurricane Helene. Weirdly, I get rebound VM symptoms a couple days after the storm moves on.
Coping Strategies: FL-41 glasses at work to reduce eye strain-- these have worked so well for me that I have 3 pairs for different purposes. I use e-book/e-paper devices whenever possible. Flare Audio earplugs help minimize noise signals (when I remember to put them in, lol). I use lamps in my office instead of the overhead LEDs. I am a bit religious about supplements, I am learning to walk away from work when the nausea sets in. I am learning to work more slowly since speed aggravates my brain. I work on good days b/c they are good days and work less or not at all on bad days. I spend a lot of time deep breathing, but not enough time exercising. More outdoor exercise is necessary b/c I can feel my brain relax within a couple of minutes. I am become more comfortable with telling colleagues, family, and friends when I’m having a bad brain day.
I guess I should wear sunglasses.