So our story begins out on the town, having drinks to celebrate a dear friend's 40th birthday. I came home after midnight, had a snack, and drank a bunch of water. I took some ibuprofen to try to stave off a hangover and went to bed. I woke up needing to pee around 4 a.m., as one does after a few cocktails with friends.
I remember feeling pretty woozy. (I've always had low blood pressure; I black out if I stand up too fast.) I went to the kitchen to drink another glass of water. Sat at the dining room table to drink the water. Remember thinking I really needed to pee, but I cautioned myself to go slow and be careful.
-90 seconds of amnesia-
Came back to consciousness sprawled on the floor of the bathroom. My husband - a physician assistant - was kneeling next to me looking very worried. I'd fainted and hit my head either on the cast-iron bathtub or the ceramic floor tile (vintage 1940s bathroom). I had a cut through part of my left eyebrow.
I didn't feel too bad. Hungover, mostly, if I'm being honest, and I figured I deserved a morning of misery. Penance and all. I got my cut glued shut, and we went ahead with our summer vacation, starting the long drive to upstate NY from Durham, NC.
Long story short: in the days that followed, I got worse. And I stayed worse. I had never heard of Post-Concussion Syndrome, but I had all its classic symptoms:
fatigue - I could not walk fifty yards without feeling dizzy and woozy. I would need to sit down and rest
somnolence - that means "unusually sleepy." For a few weeks I took two-hour naps, and went to bed at 8:00, sleeping until 8 AM.
lack of affect - my in-laws kindly described me as "subdued." I was not myself: not laughing, not quick on the uptake, not sparkly or interested in anything. My husband and son became increasingly worried as the days passed and I didn't return to my normal self
headaches - which would become my constant state-of-being for the next 5.5 years. Headaches everywhere: pulsing in my forehead, stabbing pains on top of my head, ache in my neck, throbbing pain everywhere
difficulty remembering words, difficulty concentrating (persisted to some degree for 5.5 years)
a weird lag between my eyes moving and my brain actually registering what I was seeing (this persisted for 5.5 years as well)
difficulty driving - the world just went too fast around me; I could not keep track everything that was zipping by (for 3 months)
grocery stores, crowds, farmer's markets - I would feel overwhelmed, dizzy, crazy, basically need to shut down
light and noise sensitivity
zombified - I did not even have the energy to care about being depressed or anxious. I just needed to lie down
I had an MRI one week after my fall, to rule out a slow bleed. As long as my brain was physically okay, we figured I would just get better with rest and time.
5 MONTHS LATER (winter 2011-2012): I was a bit better. I was sleeping normally and could do maybe 50-70% of my normal activities, depending on the day.
8 MONTHS LATER (spring 2012): I got worse again. And every spring thereafter. We have many theories on why I would regress so much each spring. It was always the same time: about a week after the pine pollen coated everything, so our main theory was that my sinuses would swell or pressurize, and push something out of whack in my brain. (Very scientific, right?) An alternate theory was that super-sneezy allergy days were whiplash-y enough to re-ignite the bad brain cascade.
EVERY YEAR: Back to the couch for three months every spring. At other times during the year, I might be at 50-90% functional. But never did I ever feel the same as before the concussion.
What I tried to get better
2011 - 2013
MRI - Ruled out physical problems like a slow bleed
Ophthalmology - I felt like something had changed with my vision. The ophthalmologist tested my vision, told me there was nothing concussion-related happening, and gave me an Rx for reading glasses. (More on this later.)
Rest - Didn't really help.
Exertion Therapy - My husband researched this and we found an article from the University of Buffalo that basically said exercise until you have a headache, then back off. Work on extending time and exertion level. Helped a bit, but then I would feel bad -- dizzy and pounding headaches -- again.
Cranial-Sacral Therapy - I think helped a bit, but again, obviously didn't cure me.
Certainly the biggest upshot of cranial-sacral therapy was that I learned that my position sitting at a desk or table to work on my laptop computer WAS CAUSING MY TWICE-WEEKLY MIGRAINES. PSA! PSA! Migraines can be postural! When I started standing to work on the computer (very simple to DIY with a board and some supports) or ... ahem ... reclining like a soused Roman Emperor whilest typing .... my migraines (with visual aura) abruptly stopped. (N.b.: these migraines felt separate from, and in addition to, my constant PCS headaches.)
Russian Space Blanket - I know sounds crazy, but when you feel TERRIBLE for years, you'll try stuff. Anyway, it didn't help.
And then: concussion 2
I took a fastball to the back of the noggin.
Everything happened all over again.
Horrible few months, then better/worse/better/worse.
What else I tried
Rest - did not help. I'd get better or worse independent of how much I rested. I did find if I "over-did it" I would get extra tired. But looking back, I'm not even sure if this is true. I just felt more or lest horrible day to day.
Screen rest - There's this totally pervasive "wisdom" that you should stay off screens like TV or computer after a concussion. Didn't help.
Homeopathy - was quite helpful the month after my second concussion. It seemed to get me from functioning at 20% capacity to maybe 75% capacity. But didn't seem to help with chronic PCS symptoms.
Cranial-Sacral Therapy - helped a little, but obviously not a ton.
Acupuncture - did not help. Sorry, acupuncture.
Supplements - I took Acetylcholine and some Chinese supplement I can't remember, for brain injury. Also fish oils. I'm agnostic on the fish oils (although I still take them every day), but the other things did not help.
Sleep Hygiene - as in going to bed and getting up at around the same time every day, and making sure I got 7-9 hrs/night. Helped a bit.
Frankincense - essential oil. Whatever, sorry, I tried a lot of things. Did not help.
Noise-Cancelling Headphones - made me a bit saner, but not a long-term solution.
Neuro-Optometry - so this is a tough one:
I really liked this optometrist; she came highly recommended by a friend-of-a-friend with PCS. After two intense testing sessions, I was diagnosed with: Post-Traumatic Vision Syndrome, Convergence Insufficiency, Pursuit Dysfunction, and Visual Disturbance (Visual Midline Shift), and my already-present mild myopia and astigmatism. She prescribed me progressive bifocal glasses with prisms, worn during all waking hours. She wanted me to wear these for two months and then return for reassessment.
PROS: I felt validated! That there really WAS something that had changed with my eyes! She also confirmed that, sadly, a lot of optometrists and ophthalmologists really don't know what to look for in terms of concussion effects on the ocular system.
CONS: Weeeellllll.... between visits and glasses, we're talking a $750 outlay. And basically Dr. Collins at UPMC said, "Take off those glasses. They are not doing you any favors for long-term recovery." So. There's that. More on this below.
TO BE CONTINUED....
And finally: University of Pittsburgh's Sports Medicine Concussion Clinic
EDIT: So I started to write up all this stuff and then got sidetracked writing an actual book (yay!) so .... here is a link I found SUPER helpful that covers SO MUCH of what I was going to say anyway.
I HIGHLY recommend this blog, as it is the very thing that sent me to UPMC. I'm grateful to this blogger for sharing his story and getting me to UPMC post-haste. Please click for some really good info: