I just wanted to offer some hope to others recovering from post-concussion syndrome. I have recovered my cognitive function! It was cathartic to write about it, so for those who are interested in the details of my multiple concussions and my recovery, read on! I hope that I offer some information that will help others heal. If you don’t feel like reading this whole thing, and I understand if you don’t (lol!), scroll down to my tips for getting better toward the bottom.
I have had four concussions. The first happened October 2010 when I was rear-ended at a red light. It was at that time that my eyes became very sensitive to light and I started wearing sunglasses at work all the time, despite the funny looks and comments from my boss. I was pregnant at the time, and all kinds of things were out of whack, so I didn't connect it back to the head injury. I also had some serious "baby brain", but again, I didn't connect it to the concussion.
My second concussion happened December 2011, when I hit my head on a wooden beam. At the time, I was mainly just embarrassed that I did something so clumsy and stupid! I iced my head, took some Ibuprofen, and just blew it off, even though I knew this was a worse concussion than the one I got during the car accident. Flash forward to ten days later, I was getting out of my car and I lightly hit the back of my head on the door frame, and it hurt like hell! It was only then that a little lightbulb flickered on in my concussed brain. I thought, "Oh my gosh, I hit my head! That's what's been wrong with me!" I had forgotten about hitting my head altogether, and so I'd been wondering why I'd been having headaches, feeling totally out of it, being extremely forgetful, losing small bits of time, and driving like a menace (due to the losing of small bits of time). I had just thought I was losing my mind! In that 10-day period, I had almost been in 5 car accidents. They were extremely close calls! One was in the parking lot at work, when I ran a stop sign and nearly hit my boss! At that point I called my doctor, but we were about to leave town for our Christmas vacation, so I just determined that I wouldn't drive until I felt better and would go in for an appointment when I got back in town. By the time we returned, I thought I felt better and didn't bother to go.
Flash forward eight months to August 28th, 2012, when I ran a stop sign two blocks from my house and was hit by an oncoming van, spinning out into a parked car. Yep, another concussion and a neck sprain. I have an excellent driving record and hadn't caused an accident in 16 years (when I was 19), so I couldn't believe what I had done. I knew I had been in outer space when I ran that stop sign, and it really scared me. Thankfully, I was the only one injured, but after the accident, my husband confronted me. He told me something wasn't right, that I'd been acting strangely for months--really spacey and forgetful, but he hadn't said anything to me about it because he thought it may have just been the effects of new motherhood or maybe even post-partum hormones. I knew he was right, had noticed the symptoms myself, and had even gone to the doctor about it, but she didn't find anything wrong with me. Also, I have ADHD and hypothyroidism, so it was difficult for me to differentiate the symptoms of post-concussion syndrome and those associated with these disorders. I thought of my issues as my ADD symptoms being worse than they'd ever been but couldn't figure out why. When I asked my husband how long he'd noticed me acting differently, he said, "I don't know, maybe since December." Later that night, after he'd fallen asleep. it dawned on me that my concussion had been in December.
I took the day off from work to recover, but the next day, in an email, I asked my friend/coworker of five years if she'd noticed any changes in me, explaining what my husband had said. Her response was, "I've been wanting to say something to you about this for so long, but I didn't know how to without hurting your feelings." She then gave me a list of things she'd noticed, anything from asking the same questions over and over again to messing up a lot at work to being unable to make simple decisions like what to eat for breakfast to being withdrawn in group situations. This confirmed it for me, something was definitely wrong! I went to the doctor, and she suggested I take a leave of absence from work and see a neurologist.
I got a CT scan, but it came back normal. I also had an MRI, which came back normal. In the weeks after my car accident, my symptoms got much much worse. I felt exhausted all the time, foggy, and easily confused, and I had the memory of a goldfish. I had terrible headaches and debilitating, mind-blowing migraines. Maybe worst of all, about three weeks after the accident, I started experiencing terrible vertigo, which then ended up calming down to regular dizziness with any kind of movement. After many weeks of waiting, I got in to see a neurologist, who prescribed medication for my headaches and migraines, as well as physical therapy. I started physical therapy in October and also got the ball rolling to take neuropsych testing.
By mid-November, I was showing some mild improvements through physical therapy and I was spending every day trying to rest. Thanks to my short-term disability, we were still able to send our daughter to day care 2 or 3 days a week, so that I could rest, go to therapy, do my physical therapy, and go to any doctors’ appointments I had.
Then the unbelievable happened. I went to see a movie with a friend, and on our way home, another driver lost control of her car and hit our vehicle head on. Yes, that’s right, another concussion and neck sprain! I was sooooo thankful to be alive and not seriously injured that I didn’t even feel unlucky really, but this certainly didn’t help my recovery.
Still, the month of December, I was doing pretty well, considering. I had cognitive testing done (finally!), and it did show intermediate memory loss, as well as a high score for short term memory that didn’t quite cross the threshold for what was considered normal (though I don’t think it was normal for me). January came though and that whole month was lost to horrible daily headaches for which I could get no relief. At the end of the month, frustrated with her inability to help me with my headaches, my physical therapist consulted another therapist named Maria who was a spine expert trained in the Mulligan technique. One minute after Maria placed her hands on me, my headache was gone, and thankfully, this has been lasting! Apparently, a gap between my C2 and C3 vertebrae was the cause of these terrible headaches. Not only did she fix the problem, she also taught me how to fix it myself if the gap were to come back, which I have done successfully three times now.
Miraculously, a week and a half after Maria “fixed me”, my cognitive symptoms lifted, and for the first time in over a year, I truly began to feel like myself again. I’m not sure why this issue with my spine being adjusted seemed to precede this recovery. My physical therapists speculated that maybe there was something vascular going on that was compounding the post-concussion syndrome, but I don’t know. So far, this recovery of my cognitive abilities has been lasting, and it’s been a few weeks now! I have a memory again, I have an attention span, and I am able to organize and plan. It’s amazing! For so long, I could only do one thing at a time, so I would have to turn off the radio to talk to my husband, whereas before the head injuries, I always needed background noise to help me focus and concentrate. Well, just like that, I’ve switched back to my normal! Yay! I love working on the computer with the tv on in the background. I know it’s crazy, but it’s just the way I’ve always been, and I so hated not being able to function like I normally would.
Here are the things that I found most helpful during my recovery:
1). REST!!!! Seriously! Resting does not include weeding your garden or scrubbing your baseboards. Resting means doing whatever makes you feel the most relaxed and at ease, while not adding any extra stress to your body. Don't feel guilty about resting (like I did). Make resting and healing your full time job.
2). LISTEN TO YOUR BODY! Listen to your body above anything else! I freaked out a few weeks after my second car accident and started looking all over the internet for the best ways to heal. I saw that I’d done everything wrong and was filled with terrible anxiety. It wasn’t helpful. I tried to implement other people’s regimens for recovering, with bad results. I tried not watching tv at all and thought I might go insane out of boredom. I tried meditation and was so filled with anxiety that I burst into hysterical tears. I tried napping mid-day several times and each time, woke up with a migraine. I ended up just saying no to naps and decided that watching tv was more restful and healing to me than napping. Instead of napping, I watched 1 ˝ hours of tv every afternoon. So no, don’t watch 15 hours of tv a day, but yes, if it helps you relax, zone out for a little while and watch a few of your favorite programs. Listen to music, play puzzles, talk on the phone, bake, knit, go for a stroll, do whatever, if you can do these things and feel relaxed and comfortable. Play with your kids, your dogs, your cats, in ways that don’t disturb your body (no rough-housing!) but will keep your concussed brain happy. I really think it’s up to you to decide what’s good and what’s bad for you. If it’s bad for you, you will feel it!!! Everyone’s different, and each injured brain is unique.
3). ASK FOR HELP!!! It was hard for me to do this, but you can’t do everything that needs to be done. I wish I’d asked for help sooner. You need other people to fight for you to get the care you need in a timely manner. (I waited too long for everything, and I feel it lengthened my recovery time.) You may need help caring for your kids or getting your house clean. If there’s someone or better yet, many someones you can ask for help, do it! I had help from my parents, my in-laws, and several good friends, not to mention my wonderful husband. It would have been so much harder if I’d had to do it alone, and I’m sure I wouldn’t be as far along in my recovery without their help.
4). KEEP SEEKING ANSWERS UNTIL YOU FIND THEM! If it hadn’t been for my physical therapist seeking help for me outside her area of expertise, I may not have improved as much as I have. If you have horrible headaches everyday, don’t assume it’s just because of the concussion. It could be a neck injury or even something else, like a vitamin deficiency. You never know! If one thing isn’t working, try something else and keep trying until you find something that helps. Don’t give up!
5). TRACK YOUR PROGRESS! I kept a daily journal for many months, rating my days by how bad my symptoms were. It was very helpful to see that, slowly but surely, I was getting better, and it also helped me recognize patterns and see what factors caused me to feel better or worse. Now I’m off the daily journal habit, but I still have Lumosity.com to help me see improvements. I joined the website at the beginning of December. I want to recommend people check it out, as I feel my membership to this site was helpful to my recovery and well worth the money. I was able to track my progress, as well as work on regaining skills that I had lost after my concussions. Plus, the games are fun! (Well, most of them.) I’m not sure whether playing the games on Lumosity helped me regain the skills or whether it just helped me to watch myself improve, but either way, it was worthwhile. I went from scoring in the 11th percentile for memory among members in my age group and scoring not much higher for attention, to being in the 78th percentile for memory and the 68th percentile for attention as of today!
Anyway, I’m not going to lie. I’m not totally healed yet. I have pain every day from my neck injury. I still have the dizziness (considered severe) and light sensitivity, for which I’m starting a new therapy in March. I discovered through seeing a specialized optometrist that these problems are more due to issues with the eye/brain connection than to damage to my vestibular structure (though there is that too). I am also still working with Maria to build strength as I am still very weak in the upper vertebrae of my cervical spine. I also am dealing with the termination of my short-term disability—they claim I don’t have post-concussion syndrome—HA!!!! They cut it off December 13th, when I was still quite a disaster, so I’m fighting it. Perhaps most harrowing of all, I am juggling issues with six different insurance companies—3 car insurance, 2 medical insurance, and 1 for short term disability. On top of all that, I was laid off from my job right before Christmas. Thankfully we are in a secure enough financial position that I will be able to stay home with my daughter for a while before returning to the workforce. I know there are others out there who are not as fortunate, and my heart goes out to them. I can’t imagine how much harder it would be to recover if I was forced to return to work too soon or if I didn’t have this safety net and had to cope with more stress than I’m dealing with as it is.
So, no, things are not perfect, but I FEEL LIKE MYSELF AGAIN! When it comes down to it, this is all that matters. I just want to give hope to others that you can heal from one, two, three, even four concussions. I did sooooo many things wrong after my first two concussions, and yet I am still getting better. I believe that with more time and further therapy, I will recover completely!
Good luck, everyone!