Portrait: Kassandra
My name is Kassandra and I suffer from chronic migraine with aura, resulting from two traumatic head injuries. When I was three years old, I fell off a bed and landed on the hardwood floor, on the top of my head. About six months later, I started getting terrible migraines constantly. I was diagnosed with chronic migraine at eight years old.
A little bit about Kassandra
Treatment for this in children was, and still is, extremely limited, so there wasn’t much that could be done. I learned to live with the pain and eventually, was able to tolerate them when they came on.
Rewinding back to my teenage years
When I was 15, I crashed an ATV and broke my face. Specifically, I broke my nose, my maxilla, and my orbital floor. This accident required extensive surgery but I was extremely lucky because I virtually walked away from it. However, it was a massive head injury.
I still dealt with the migraines I had, but as I got older they started getting worse. Instead of hitting me with a rush of pain like they did when I was younger, they started lingering. My head constantly hurt all the time and no medications helped. The ATV accident also caused damage to my TMJ (temporomandibular joints) so for a long time, I lived with that pain as well. This was my new normal until October 9th, 2021.
Things took a turn for the worse
I was at work when I started seeing trails. It started very minor but progressively got worse as the day went on. Finally, it got to the point where I couldn’t walk or stand. I also started vomiting uncontrollably. I was taken to the emergency room where medical professionals originally thought I was having a stroke. Scans showed that this was thankfully not the case. After this, I had difficulties with speech, reading, and memory for about six months.
Getting a diagnosis
This event pushed me to finally go to a neurologist who diagnosed me with chronic migraine with aura. I was not able to see the neurologist or get in-depth diagnostics for several months after the event in 2021. It’s thought that this was a hemiplegic migraine. This neurologist also was able to get me on a regimen that worked. It took almost a year for my health insurance to cover these treatments. Today, even with all the medications I take, there are still days when I have pain or fogginess in my head. I still get dizziness, nausea, and muscle weakness at times. The treatment is not foolproof, but it was a total change in my quality of my life.
How this has impacted my life
Since this head injury and the onset of more complicated migraines, it’s gotten progressively harder to drive. I’m not supposed to be driving at night anymore because of it. Another thing that worries me is that something can always go wrong with the insurance and I won’t receive treatment. There have been a couple times where I’ve had to wait a little longer than I was supposed to and I could feel the effects on my head very strongly. It’s scary to think about what would happen without these medications.
I also have to be very delicate with my head. Even turning my head to look to see if I can merge on the road can sometimes bring on symptoms. Unfortunately, there are many physical activities that I used to love to do that I really can’t do anymore . Even though I’m not able to do some things, I was able to dedicate more time to reading, embroidering, singing, cosplay, and hair braiding. I’m also very fortunate to have my family and close friends who are an amazing support system.
Getting treatment and finally being listened to
I think that the best high in my journey was actually getting help and finding a doctor who listened to me. I’ve lived my entire life with chronic migraine. After the traumatic head injury, I went through many years with my pain getting progressively worse. I was always hurting, miserable, irritable and constantly depressed; no one wanted to be around me.
After I sought treatment, I felt like a new person and actually started enjoying life again. It took years to find a doctor who listened, validated what I was feeling, and treated me accordingly.
Reflecting on my low points
The lowest low that I’ve experienced before and after the head injury is that it’s an invisible injury. I’ve been told by countless people that I’m being "too sensitive”. People have told me that they understand the pain I’m in because they sometimes get migraines. All I have to do is “sit in a dark room and it will disappear”. They think that, since they sometimes have headaches and can work through it, I should be able to. It’s always been very difficult to get the time off work to get my treatments from my neurologist. When I say I need a break, I’m “overreacting”.
My advice to other brain injury survivors
My advice for fellow survivors is to stick to your truth. No one knows your body better than you do, so don’t let others speak for your body. Be picky and persistent with your treatment team and those around you. Not everyone around you is going to understand, and that’s ok. The important people are going to be the ones that try to. Also, don’t let your injury steal your joy.
For years I was miserable, and miserable to be around. I surrendered myself to living with chronic pain quietly forever. It doesn’t have to be like that. You aren’t alone in your fight.
You are your own biggest advocate.