I'm sharing this story because, even though I hid this from my website navigation (because it was incomplete), SO many people have reached out to me over the years, having still found this page from website searches. So many of you are looking for hope for your PCS. Thanks to a recent email exchange, I have finally come round to finishing the page. What I want you to know is: I recovered, and so can you.
R. B. - if you're reading this: thanks for the prompt to finish this page, and hope you are in excellent health and fully recovered!
How it started: concussion 1
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 have a wee around 4 a.m., as one does after 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 use the bathroom, 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 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 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.
My symptom profile would be different depending on the day and what I was doing. Going to the grocery store or Target, or to a party or gathering, or driving, seemed to be the worst things.
In general, during any of those activities, my symptoms would include: Exhaustion; dizziness/vertigo; zero energy; zero emotional affect; “feeling like a zombie”; feeling like things were happening “at” me (instead of with me, hard to put into words, but like I was standing still and everything in a store or wherever was just rushing up at me); not being able to track things; just not being able to deal with anything, let alone everything!; nausea; my eyes hurt or felt gritty; constant headaches; a feeling of “overwhelm,” as if I could not process everything happening to me; anxiety; depression/finding things demoralizing bc nothing helped; wanting to go home, crawl into a hole (or bed), and stay there.
What I did to try 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. So I didn't stick with it very well. I would do a little bit and then stop.
Cranial-Sacral Therapy - I think helped a bit, but again, obviously didn't cure me.
Side note: the biggest upshot of cranial-sacral therapy was that I learned that my migraines were postural. Sitting to work on my laptop computer WAS CAUSING MY TWICE-WEEKLY MIGRAINES. Public Service Announcement! 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 auras) 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! I read about it in a Post-Concussion book. Something about it trapping your vital energies and so you feel better. 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" by going out or doing something, I would get extra tired. But looking back, I'm not even sure if this is true. I just felt more or less 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.
Acupuncture - did not help. Sorry, acupuncture.
Supplements - I took Acetylcholine, a brain remedy I cannot remember the name of, and some Chinese herb supplements. 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 that was with a Groupon). And then when I got to UPMC (see below), basically the doc said, "Those glasses are not doing you any favors for long-term recovery." They were treating the symptoms, not promoting a cure from the root of the problem.
I probably tried other stuff that I don't even remember at this point (I'm adding stuff now in 2019, and I feel like all this is way far in the rear view, thank God). Suffice it to say, I spent thousands of dollars and a lot of hours, and a whole lot of heartbreak and frustration, trying to get better.
And then ... I find out about the University of Pittsburgh Concussion Clinic
I was googling Post-Concussion Syndrome, again, in what I figured would be another vain attempt to find something to help. I scrolled through page after page (sound familiar?). And I came across this blog:
I HIGHLY recommend clicking on over to that link. It changed my life -- more precisely: it gave me my life back. That guy who wrote it is a mensch. :)
I read the blog post with increasing excitement. It made me ... hopeful! I showed it to my husband. We looked at each other. We reread the post. Should I go? What about the expense of traveling to Pittsburgh? Probably our insurance would cover very little of it.
I didn't hesitate long. But I did hesitate. And looking back, I think what made me hesitate was this: I had tried so many things. I had spent so much time and money already. If I went to UPMC, didn't that mean I'd basically wasted all of that time and money? The more I thought about how much I'd already tried, how much time and money I'd already spent, the crazier it seemed to go to UPMC.
There's a name for that line of thinking. It's called the sunk cost fallacy. The sunk cost fallacy refers to the (often really bad) decisions we make when so often we are motivated not necessarily by what's good or right for us, but how much we've already invested in something. Even when it's not working. The more time and money --and hopes and dreams and blood and tears and sweat-- we've put into something, the harder it is to let go and try something different. It's the car you buy, even when the dealer keeps adding costs at the end of the deal, because you've spent so much time at the dealership already. It's the poker hand you won't fold because you've already bet a bunch of chips. The sunk cost fallacy makes for really bad decisions, y'all.
Anyway I thought about it for about a week, and at my next appointment I asked my cranial-sacral guy if he'd ever heard of the UPMC Concussion Clinic (no, he hadn't), and what he thought of me going there (he was kind of flippant, and said, "Well it can't hurt".)
And then, if I'm being honest (and I want to be honest), I meditated on it. I asked the Universe if I should spend the time and money to go to UPMC. The answer was a resounding YES. This is a physical, structural problem and you need some physical, structural, practical solutions. UPMC will give you those.
Well, when the Universe tells me something so clearly, I try to listen. So I called and made an appointment. (At first they said they couldn't see me because my concussion had been longer than the time they treated them -five years ago I think?- so I just went by the date of my second concussion.)
The number one question I get asked by people who contact me about my PCS recovery is "Do I really need to go to UPMC, when I've already tried so much, or I'm already doing a lot of the things it seems like they do?"
Only you can answer that question of course. But I would ask you to ask yourself, truthfully, why would you not try it? Is it because of your own sunk cost fallacy, of all the things you've tried? Have you gotten used to having PCS, as much as you hate it?
I can tell you this: everyone I've told about UPMC, who has actually gone and who I've heard back from, has said "THANK YOU! I am fully recovered!" Obviously this is anecdotal and a small pool of folks. Take it as you will.
Everyone is different. And that's part of the point. The individualized approach of UPMC's treatment plans, the confidence and expertise, the agressiveness of the treatment, all these things made UPMC stand out.
Plus, not for nothing - the walls of UPMC are chock-a-block with photos and thank-yous from professional athletes (and ballerinas, more my speed!) thanking the team for their full recovery from PCS. I know that sounds silly. And it might not be the best reason to fly across the country. But I could have wept when I saw those photos, and when I heard the reassurances from the staff there. And they were right - it worked. Anyway. That link. It's super informative, much more than my page, and it is the very thing that sent me to UPMC. I'm so grateful to that blogger for sharing his story and telling me about UPMC. Turns out that he's sent a lot of people to UPMC! Dr. Collins asked how I'd heard about the Concussion Clinic, I said "A blog post ... this guy who...." and he said, "Oh that guy! Boy do we get a LOT of referrals from his blog post!"
So! April 2017 - I go to the UPMC Concussion Clinic
Here was my day, as I remember it. They schedule everything all in one day for folks who come from out of town.
Please remember, I'm not a medical professional, so I may have misunderstood or am misremembering tests and treatments!
Please take this all with a grain of salt. Also, please do not use my experience as a course of treatment. THERE ARE DIFFERENT KINDS OF CONCUSSIONS, AND ALL OF THEM REQUIRE DIFFERENT TREATMENTS. I can't diagnose you or treat you. The whole point of the concussion clinic is that you get an individualized course of treatment, for YOUR concussion and YOUR symptoms. For lots more information, click on over to UPMC's "Rethinking Concussions" site: http://rethinkconcussions.upmc.com/category/concussions-101/
1. IMPACT STUDY
They were (don't know if they still are) collecting data about concussions, post concussion syndrome, symptoms, and how it all responds to their therapies. So I started my day at a computer doing this IMPACT study. It's now two years later (as I write this) and I don't remember a ton of details other than some of it had to do with short-term memory and processing speed. It didn't feel like a big deal to me and I was happy to participate in the study if it would help others.
2. INITIAL INTERVIEW
Here I talked with clinic physicians about my concussion, symptoms, etc. They told me what to expect for the day, and that I'd have a follow-up interview at the end of the day to tie everything together. It was pretty much what you'd expect from an initial interview.
3. EXERTION TESTING
Time to go to the physical therapy gym, downstairs from the concussion clinic. (I'm told you can sometimes see some Pittsburgh Steelers players there, but I'm more likely to clock a ballerina than a Steeler.) I met with a very nice physical therapist. He had me ride a stationary bike for as long as I could until I my head pounded or I got so exhausted I felt like I couldn't do it anymore. He didn't want me to do anything unsafe ... he basically to get a baseline of how long and how much exertion it would take for that to happen. (It didn't take long!) Then he put me through some movement and balance exercises to get a sense of what made me dizzy or feel unwell, thus what I needed to work on.
THE TREATMENT PLAN from the PT was EXERTION THERAPY. This meant 30 minutes of aerobic physical exercise every day, seven days a week, no matter how awful it made me feel. I could take a break if I had an 8/10 headache, but "a break" meant I could walk instead of run. I really grumbled about the thought of aerobic exercise (I'm a yoga and hiking, low-impact sort of gal). The PT emphasized that exertion therapy was a super duper important part of treatment. So okay. Anything to get better.
The PT also gave me some tracking exercises when I should move side to side really fast (feet planted) with my arm extended, and keep focus on my thumb. (It could be that the vestibular therapist gave me that exercise. It all blends together.)
4. VESTIBULAR TESTING
On to the vestibular therapist. She put me in all sorts of different positions, and put eye-movement-tracker goggles on me, to see what kind of vertigo I had. I honestly did not understand the methodology or reasoning behind her tests, but I was happy to oblige (anything to get better), and I think my physician-assistant husband found it all quite interesting. He seemed to "get" what she was looking at.
THE TREATMENT PLAN for vestibular therapy was eye movement exercises, a slew of them twice a day (they didn't take very long). Basically this involved putting post-its on my refrigerator and switching my focus around a lot. Also convergence exercises: the dreaded "pencil push-ups" and beads on a string.
I got X-rays of my neck which, to my unpleasant surprise, showed arthritis and other wear and tear possibly (although by no means definitively) related to damage of whiplash and my initial concussion. I was like "NOOOOOOO that seems terrible" but here my husband did his usual magic of talking me off of a freak-out ledge, assuring me that most people in their 40s will show some level of arthritis or other wear and tear in their spines. The point was that my neck hurt, and what to do about that.
THE TREATMENT PLAN was physical therapy for my neck. And ibuprofen as needed. It could have included a steroid injection, but that didn't seem necessary to me. Honestly, dealing with my neck pain (what a pain in the neck! Har har) was an issue, but it wasn't the most important thing to me. I wanted my life back.
6. WRAP-UP MEETING
The "wrap it all up" meeting was really important to me, even though it was really just a summation of the day. We convened in Dr. Collins office. He was that perfect mix of very-confident-but-not-cocky. He could see how motivated I was, and he assured me that if I followed the protocol, I would get better.
Part of what the doc did, during our meeting, was point out that there were soooooo many things that I was listing that I couldn’t do any more. He said I needed to change my “I can’t do this anymore” to “I will do this.” And then do them. "Just do it" kind of became my motto of exposure therapy.
I know that might sound trite, but having had PCS for 4+ years, I had gotten really used to feeling like I just couldn’t do a lot of things any more. His words - and expertise and experience that he had seen thousands of folks just like me, or worse off than me - who had recovered, were super wonderful and reassuring and also challenging and a “swift kick in the ass.” It really both motivated me and gave me tremendous hope and encouragement.
Anyway "Just Do It" was not a Nike motto to me. It was the bulk of the treatment plan: exertion therapy and exposure therapy. The vestibular therapy was, I'd say, the icing on top of the exertion/exposure double-layer cake. (Mmm. Cake.)
Dr. Collins asked me what I would have done on a trip like this with my husband, before PCS. I said we'd probably go straight down and have a beer at the pub to debrief. He said, "Well, then, go have a beer at the pub." We did, (just one beer), and toasted him and his team.
And I toast them again! Cheers, Dr. Collins and all y'all at UPMC!
After UPMC: 8 Weeks of Homework
April - May 2017
Compared to how much of my life PCS ate up, my homework plan didn't actually take THAT much time per day.
-- Let’s say 15 min, twice daily for the vestibular and ocular exercises. The ocular convergence exercises - the ones that make you focus on things closer to your face, so your eyes are converging but not crossing -“pencil push-ups” and the one with beads on a string - those were the two ocular exercises I most dreaded bc they literally hurt my eyes and my head.
-- And then another 30 min per day for exertion therapy. So that’s one hour per day so far.
-- And then I had PT at Duke maybe once a week, for my neck? 30 min appts, but those were actually quite lovely, basically vigorous neck and shoulder massage, with a few daily core, shoulder, and neck exercises and stretches as “homework,” maybe another 10 min per day? So now we’re up to 70 min per day plus PT appts if needed.
-- Oh! I’m just remembering - they also said naps and lie-downs were a no-no. They were big on sleep hygiene - going to bed and getting up at the same time every day, and getting a solid 7-9 hours per night. Preferably 8-9 hrs but some people are ok with less. But no naps! They were VERY adamant about this.
-- And then, yes, exposure therapy. That was the bulk of the day. That meant doing everything - with complete disregard for whether I felt like doing something or not. Working, going to the grocery store, doing errands, going to friends' parties, going to movies or baseball games, you name it. The worst for me was grocery shopping in a crowded store. Ugh.
Basically, anytime my family or friends invited me to do something with them, or there were any errands or work that needed doing, I just made myself do or take part in, no matter how much I didn’t feel like it. "Just do it."
HOW IT FELT TO DO THE HOMEWORK
Apart from the neck massages, which felt good, I felt HORRIBLE during the first several weeks of my UPMC treatment protocol. The team had said (as a caution but not a jinx), that some people feel worse and some people feel just the same. I felt awful. Including emotionally - I got really depressed and anxious. It was like an intense cascade of all the stuff I’d felt over several years of PCS, all compacted into a few weeks.
My headaches, too, got worse before they got better. But then, one day, maybe three or four weeks into treatment, I woke up without a headache. It felt like a bloody miracle!
And then, maybe four weeks in, I really started to feel better. Like - A LOT better. Energy levels coming back, emotions stabilizing, starting to laugh and enjoy life again. By week seven, I was cured. I mean ALL BETTER.
Follow-up visit to UPMC
Dr. Collins had said to return to UPMC for a follow-up in 6-8 weeks, but instead of scheduling my return, I emailed the team and said I was feeling so much better, did I really need to make the trip? They gave a couple of mini-tests for my PT to give me (including measuring the distance of my eye convergence, how close to my nose before I would see double, but I don’t remember the rest of the tests, there were only a very few) and said if I passed those and felt great, no need to return. So I didn’t!
In conclusion ...
I know I said that everyone's different, and that is true. But please: just call UPMC and make an appointment.
They gave me a plan to follow, and that plan gave me my life back. It wasn't until I was fully healed and well that it truly began to dawn on me how much of my life PCS had taken away. I missed YEARS of playing with my son and enjoying my family and friends. You probably have, too. You don't have to continue to miss your life.