Bit off-topic for my blog, but I’m just coming out of a very dark tunnel that the medics like to call ‘Post Concussion Syndrome’, and to put it lightly, it sucks.
It’s not just the symptoms that suck. It’s the lack of knowledge out there on what people should do if they suffer from it.
The constant research that you have to do, because doctors don’t know what to tell you, is really frustrating, and not to mention extremely difficult when you have a brain injury to contend with.
So I wanted to write about my experience, in the hope that I can pay it forward and shed some light to someone else who may be struggling with the aftermath of a concussion.
First, Here’s what happened to me….
On Dec 19th 2019, I was cycling home with a friend and we crashed into each other. I dunno what the f**k my hands thought they were doing, but they did nothing to stop my fall and I somehow ended up with my face taking the entire impact.
I decided against posting a picture of my face because it’s really grim, so here’s a pic of my bike handlebars instead:
I’m actually impressed I managed to bend steal
I then tried to get back on my bike and wish my friend goodnight, but he was adamant that we went to hospital. I guess at the time, I hadn’t seen the giant cartoon-like bruise that was protruding out of my head.
6 hours, a CT scan, and a tetanus shot later, I was told I was free to go and that I’d probably suffer from the effects of a concussion.
What is concussion?
Concussion is a traumatic brain injury resulting in temporary loss of brain function. The experts used to think concussion was a bruise on the brain, but recent studies show that your brain cells actually stretch, which is where the damage comes from.
“It’s just a concussion”
Just a concussion, they said. No big deal, according to every medical peice of information out there, it lasts around 7-10 days before you start to feel yourself again, you just gotta rest up.
But it is a big deal.
At this point I was suffering from the following symptoms:
- Noise sensitive
- Light sensitive
- Extremely irritable (hulk style)
- Extremely overwhelmed (I cried at e v e r y t h i n g)
- Fatigue (I would sleep for 10-11 hours each night)
- Poor concentration
- Forgetful/confused (I’d forget mid-sentence what I was talking about)
- Tinnitus (the ringing you sometimes get in your ears)
Now most people do recover from a concussion within 7-10 days (max 30 days), but in around 30% of cases, symptoms can go on from anything between 3-6 months to a year or more. This is what is known as Post Concussion Syndrome (PCS).
And that’s what happened to me.
What’s with all the symptoms?
Let’s be clear, I ain’t dissin’ the brain. Brains are actually pretty amazing. They process every single little thing that is happening and keep us oblivious to it, so we can blissfully get on with life.
Unless of course, you damaged it.
Let’s say you’re in a noisy environment like a restaurant. Your brain doesn’t need to alert you to all of the noises going on, because you learned what they are many years ago so they just carry on in the background.
But when you suffer from a concussion, the filter that would normally process all of those background sounds is broken, so it keeps alerting you to them, on top of all the light that’s around you, and the smells, and well, you get the idea.
Leaving you feeling completely overwhelmed and sensitive to everything, and once that starts to build up and up, the more symptoms you get.
Pushing through will only prolong your recovery
Two weeks passed and it was time for me to go back to work. I was still suffering from the same symptoms, but since there was no suggestion otherwise, I trundled off to the office to try and get on with my life.
But working only magnified what was going on in my head. On the good days I would make it until around 11am, before I’d mentally checked out for the day.
After pushing through this for about 2 weeks, I got to a day of breaking point. It felt like I wanted to rip my ears out of my head to stop from hearing every single sound. I wanted to punch my colleagues in the face for breathing. I wanted to claw my eyes out so that the light would stop hurting. I didn’t know what people were saying to me and no amount of deep breaths would make it go away.
Doctors didn’t know what to say
I went to see my doctor and she told me it would last for as long as it lasts and I had to rest. That was it. All the advice she had for me was rest.
So I gave the ‘rest’ method a week, but nothing improved. If anything it felt like my symptoms were getting worse.
I knew that this was not going to go away by just resting. But I didn’t know what the fuck I was menna do. Luckily with the help of other people sharing their story, I managed to get the advice that was needed to get better.
So here’s a few things that you can do to recover from Post Concussion Syndrome…
1. Find a support system
As with any invisible injury, it’s really hard for other people to relate if they haven’t been through the same thing. When something like this happens, most people will have a timeline in their mind as to when it should be over, and when it surpasses that, they don’t know what to say/how to help you.
My friends and family are literally amazing and they have been so supportive, but I was embarrassed that it was still a thing impacting my life, and I hated the thought of being the negative Nancy of the group, so I didn’t like to talk to them about it.
What did give me a little light at the end of the tunnel, was finding people who have been through the same thing before.
I was introduced to a colleague at work who had been in a similar incident a couple of years back. She recommended loads of specialists, and a community online so that I could see how other people had recovered. Without her and the community I started to follow, I don’t think I would be where I am right now!
My top concussion accounts to follow are:
Molly Parker– She is a doctor of Physical Therapy and has been through Post Concussion Syndrome. She now has a business dedicated to helping people recover which offers all the information you need in one place.
The Concussion Doc – This guy is an actual specialist in concussion, can you believe? He posts loads of videos/Q&As on what is happening post concussion, and what the route causes are so you can start fixing them.
2. Keep track of everything you do in a day
The second month into my recovery I started seeing an Occupational Therapist. She asked me to write down every task I did for every 15 mins of the day. This would include literally everything. Making breakfast, taking a shower, looking at my phone, reading, talking to my boyfriend – basically monitoring what you do each day.
She got me to do this for four days and then we looked at the results, highlighting each activity:
Blue = resting
Green = mental task
Pink = physical task
After that, we discovered that I wasn’t taking enough breaks between doing a mental task. At the beginning, you need to be splitting your ‘green’ tasks up pretty much every 30 minutes with a break.
This is super important because your brain doesn’t have the same capacity to deal with stuff like it used to, so you need to monitor how long you can work at something before your symptoms appear.. (more on that below)
3. Eat your veggies and take your minerals
One of the reasons why you still might be suffering from concussion symptoms is because of inflammation from the injury. The best way to treat this is through your diet, so you know, cut out all the shitty foods and try and eat things like:
- Fish (salmon & tuna)
- V E G E T A B L E S
- Olive oil
- Less pasta & bread, fast food etc
And I reeeeally recommend taking Magnesium supplements as it can help improve energy, blood pressure and migraines.
6. Build up your Exercise and do it every day
I genuinely believe this has been the most helpful thing for me. I used to run pre-accident so it might be a lil easier if you’re used to it, but don’t underestimate how much exercise can help you.
In the first month or so, all I could really do was go for a walk. Sometimes I couldn’t even manage that so don’t punish yourself if you don’t feel like it. But so long as you’re getting out there a couple of days in the week then you’ll find it easier to build up overtime.
Get your heart rate up
I don’t know the full science behind this, but you’re supposed to find the optimal heart rate that pushes your symptoms a little bit, but not too much. If you can afford to see a professional who can perform the Buffalo treadmill test, then I’d recommend that.
Otherwise, get your heart moving however you want and listen to your symptoms. Push them, but not too much.
And once you’ve started building physical tasks into your day, try and do them before you do your mental tasks as it can really help give you more energy throughout the day.
7. Try alternative medicine
I promise my brain injury hasn’t made me go cray, at least I don’t think it has. One of the reasons why you may still be suffering is to do with the nervous system and your blood flow, or lack there of.
After my injury I found that my neck was really sore which could be due to whiplash as this is also something that can happen when you sustain a concussion. So I decided to try going to a chiropractor to see if it would help fix my neck, and improve the blood flow to my brain.
I went to four sessions (before Coronavirus hit) but I did feel like it helped me. Could be more of a placebo effect, but if it works, who cares?
Worth a try.
8. Build up tasks and measure your symptoms
Going back to point 2, this is how you build up your tolerance to stuff. For me, it was jigsaw puzzles because I found it really easy to know when my symptoms would start (meaning I’d pushed it too far).
I would work on the puzzle for 15 mins before I’d start to get a headache. Then I’d stop and lie down in complete darkness, doing nothing for 10 mins.
Then back to the jigsaw, but the second time that I’d get a headache, I’d push through for five minutes, then rest. And so on and so on, until I finally got to a day where I worked on it for 2 hours straight and didn’t get headaches.
And that’s basically what I’m doing with easing back into work. I started with 2 hours x 3 days per week. 3 weeks later, built it up to 3 hours 3 x per week and so on. Some days it does feel like I’m going at a snail’s pace, and can get frustrating, but then on the days that I do too much, I end up undoing all the hard work because I have to spend a day lying on the couch doing nothing.
Use your symptoms as a guide and push through them very slowly. And if you don’t see immediate symptoms but find yourself completely wiped out the next day, then you know you’ve done too much the day before.
Honestly, I’ve never been one for meditation. I’m way too impatient, my brain thinks about a million things per minute, and I really struggle to focus (even before a brain injury).
But during this time I would have done ANYTHING to get better, so I started meditating for 20-40 minutes every day and I believe it’s really helped improve my symptoms.
It’s okay if you can’t focus on breathing. Often I’d play the meditation tape and sit and think about other stuff, but it gave me time out of my day to basically sit and do nothing, which is what your brain needs post concussion.
I use Headspace because there’s loads of different meditations on there and great tips to guide you through, plus motivational quotes like this one:
Post Concussion Syndrome does not last forever
After doing all of the above for around 4 months, I started to feel like myself again. I’m not 100% better, but I barely suffer from any of the symptoms anymore and I have a new found respect for doing mundane stuff.
The problem with PCS is that there is no clear road to recovery. I can’t say for certain that each thing I did above helped me, but by testing everything recommended to me, allowed me to finally see weekly improvements, something that was very hard to see in the beginning.
I’ve also been really lucky in that I’ve had the support of my boyfriend, arguably the most positive person on the planet. He kept me in a good headspace throughout this weird time in my life <3.
Positivity is key to these things, although it’s easier said than done. Recovery is non-linear. You will have good days, you will question your sanity and wonder whether you’re just being dramatic. Then, you’ll have really shit days where you cannot do anything.
But trust me when I say, you will get better.