From a writing perspective, I have been silent and unproductive over the past year, although it’s been particularly bad for the past 6 months. This is due to experiencing Post Concussion Syndrome (PCS) from a concussion I received FIVE years ago.
In 2012 I fell while skiing (and yes, I was wearing a helmet) giving myself a nasty bump on the head. For the next few weeks, I did the bare minimum — which, when you have three kids, is still significant. I off-loaded laundry to the kids (which they still do to this day) and made simple meals, and took a lot of naps, outsourced carpooling, etc.
I couldn’t work. I’m a writer and consultant during my day job but had to pretty much stop for six months. During the first three months I couldn’t look at a computer screen without feeling nauseous, but perhaps even scarier was that I couldn’t form sentences in my head. It’s a bit of a problem for a writer.
On top of all that, I began experiencing migraines. I’d had two in my life before the fall. As I started getting back into an exercise routine, I noticed that each time I exercised I got a migraine within 24 hours. Concussion protocol is to stop anything that gives you symptoms for at least a week, better two, and then try again at a lower level.
Over the next four years, although I slowly improved physically and was able to get back to a normal exercise routine, I still suffered from migraines. I figured it was just “that time in my life” as my mother told me that my grandmother had suffered from migraines during menopause.
I tried everything to get rid of them and lead a more normal life. I saw a neurologist who prescribed all kinds of medication to prevent them from coming on or make them less severe. Nothing worked except the medication to alleviate the pain once I had one. I saw a physiotherapist (several, actually), acupuncturist, cranial-sacral therapist, massage therapist, my family doctor, a nurse-practitioner who put me on hormone cream, my gynecologist, a naturopath and finally a sports psychologist. At least you can’t say I’m suffering without doing anything about it!
Each of these professionals, while good at what they do, felt that there was nothing more they could do and that my migraines were no longer concussion-related. It was discouraging because I knew they were a result of the concussion and that there was still something wrong with my brain.
The migraines are debilitating. When I get them and can’t stop them, they last at least 5 hours and then it takes me another day to recover from the episode.
By early 2016, I was having migraines that lasted for three weeks. A dull pain that rotated around my head, never staying in one place very long, just enough to make me lose my concentration and patience with anyone who crossed my path.
A friend of mine is a doctor and she told me that one of her patients who also had continuous migraines took gluten out of her diet and later turned out to be celiac. Maybe I should give it a go. As much as I love my sweets and bread, I was ready to try anything.
Lo and behold, for about three months I was headache-free! I felt amazing! I exercised, I was patient, happy, pain-free! I could write and concentrate!…..and then, they came back.
I had started tracking the migraines in a journal and noted that I seemed to get them after exercise – again! I felt like I was right back to the beginning of my concussion journey four years earlier. I stopped exercising. I cut out dairy. The headaches went away. But, it wasn’t really a way to live. Plus, I couldn’t understand the diet-concussion connection. It didn’t make any sense to me.
The worst was, when I told people that it all went back to the concussion, most people would look at me with disbelief or disdain like I didn’t know what I was talking about. It makes you feel stupid — like you aren’t diagnosing your own symptoms properly.
I got progressively worse through the fall of 2016. I could eat very little without triggering a migraine, I couldn’t exercise, I couldn’t even drown my sorrows….and I couldn’t write. Producing articles was painful, there was something about the thought process that wasn’t working for me.
Finally, through friends and referrals, I found a health professional who actually looks at the brain damage as opposed to just the symptoms. I was encouraged when one of the referrers acknowledged that I wasn’t making it all up, but that my concussion hadn’t been treated properly at the time of the trauma and that’s why the symptoms had come back. The thing I’ve noticed about concussions is that all the health professionals treat what they are best at, but no one puts it all together and goes back to the original source of the symptoms. I was checked for a hematoma and nerve damage, the physiotherapists treated my skeletal and muscular issues, the neurologist just wants to give me meds to deal with the pain instead of addressing why I get the pain in the first place. No one seemed to think that brain damage was an issue, although by definition, that’s what a concussion is.
The health professional I’m currently seeing says there is absolutely a brain-gut link – what you eat will affect how you feel, and he’s given me the studies to back up the claims.
It’s a slow process and given my experience with professionals from both the alternative medical track and the traditional medical track, I’m not holding my breath, but I’ve started to notice very small improvements – for one thing, writing is becoming easier again.