Post Head injury symptoms
Post Traumatic Migraine:
Level of annoyance: ✖✖✖✖✖✖✖
Treatment:
Botox every 12 weeks, avoidance of triggers and trigger habituation (i.e. gradual exposure to triggers).
Hats and rose-colored glasses. I have multiple pairs these days, including fancy Raybans.
What it means:
This is the after effect of brain injury. The brain injury itself triggered a protective response to heal the damage, and now that protective response can’t seem to figure out how to shut down.
For about ½ of each month (sometimes more, sometimes less)- it’s there as an insidious and constant hum of nausea and head-pressure. At any point- if I do too much- it slowly increases in volume, so that it cripples me. I have to be especially watchful during the bad weeks. It’s linked to sensory input and bright lights and stress and doing stuff.
The vestibular and vision problems ( see below) also contribute to the symptoms, its hard to separate them out.
Life implications:
This one gives me limited stamina and means I have to pace carefully. Any day that has too much will trigger symptoms. Categories of ‘too much’ that I have to watch out for are city streets, noisy boys, supermarkets, stress, long hours, multiple sound inputs, screen work, bars and restaurants, airports, train stations, video conferences and movie theaters.
With a life that involves parenting 3 boys, commuting to NYC through Grand Central Station and traveling, I’ve just learned to figure out how to manage!
Vestibular “trip switch”
Level of annoyance: ✖✖✖✖
Treatment:
Self-treatment using Epley maneuver- a sort of rolling movement that shifts some mysterious crystals in the inner ear. Sometimes it works, sometimes it doesn’t.
What it means:
Somewhere along the line my inner ear got damaged, causing the mechanisms that regulate balance to get confused. This causes nausea, vertigo and head-rush in response to movement.
Every few months or so something trips the vestibular switch and it gets worse.
Life implications
Dizziness and vertigo every time I stand up, moving through space- e.g riding a bike, driving a car. Turning upside down- e.g. doing yoga.
A lot of housework can trigger vertigo as it involves bending forwards a lot. My least favorite thing to do in the world is empty the dishwasher as it combines loud noises (clanking dishes) with continually moving up and down and bending at the spot I broke my back. Thankfully tween boys are great at emptying the dishwasher.
If you are bored with this now- click here to go back to the main story.
Vision Convergence insufficiency- where my two eyes don’t work together properly
Level of annoyance: ✖✖✖
Treatment:
Started with vision therapy- but now self treated. It will gradually get better by living in the world. ( or so I am told)
What it means
Convergence is the distance at which our 2 eyes can efficiently work together. The normal distance is 4-6cm. Mine is currently at 15.3cm. It means that I have to work super hard to read.
Because the vision system is not working efficiently it can also means that some cognitive tasks that are to do with reading are affected. For me it can affect information processing and multi tasking that comes in the form of the written word.
Life implications
These days I read on a blacked out iPad with large print. (Occasionally I pick up a book and am shocked by how small the print is- bring back large print!)
I try to limit my screen work, but when I can’t, I just push through and deal with the nausea and headaches afterwards!
I ’m still figuring out how to manage the cognitive stuff- I definitely get overwhelmed with my email inbox when there are lots of messages flying back and forth and when dense instructions come in written form. I’m definitely better with a real life conversation.
Degenerative disk collapse
Level of annoyance: ✖✖✖✖✖
Treatment:
Steroid spinal epidurals- 3 injections every 6months.
These are pretty intense hospital procedures with anesthesia. (I did try to do one without, but sadly passed out on the table- causing all sorts of hospital hulabaloo. Oops!)
What it means:
· Long before the accident my spinal X-rays showed that the discs in my neck were damaged- probably from an early gymnastics career. But it seems that the accident caused further disc smushing- resulting in some nerve impingement at multiple levels.
In addition the scar tissue from the occipital fracture and ligament damage have just caused what doctors refer to as “a whole lot of mess” in my neck. My doctors have all told me that they rarely see a living person with an occipital fracture.
It’s theorized that the “neck mess”- contributes to headache and nausea symptoms described above. This has been corroborated by the fact that my symptoms are somewhat better after the epidurals.
Life implications:
Neck pain is just super tiring. It wears me out. It also contributes to the difficulty of screen usage- but I have mostly figured out how to sit properly and take breaks- something that we all need to do.
Driving for more than an hour at a time is tricky. I let Kevin drive long distances.
Big Metal Plates in my back: from Crushed T10
Level of annoyance: ✖ ✖ ✖
Treatment:
Keeping moving and staying strong is the best route for keeping pain away. Walking, swimming and core strength exercises are all to keeping me healthy.
What it means:
I broke my back — badly ,so of course, I get back pain. But considering how scary the injury was, it’s really not that bad.
Life implications:
Obviously I don’t try and lift really heavy stuff- I leave the furniture removal to the experts and will always accept help with my bags!
Sitting upright for long periods sucks, but in general this is something that can be easily avoided simply by standing up and moving around. Travelling is the biggest challenge Long car rides and coach air-travel are unpleasant. I try to fly business if I can (Nice work if you can get it J)
It’s strange how many chairs are actually torture devices. Hard backed chairs, chairs that focus on form over comfort, chairs that have horizontal bars. I do not like these chairs.
I miss high heeled shoes. I have rows of them in my closet and sometimes I look at them lovingly, try them on and then put them back again.
High impact sports. I could do them- but they are kind of uncomfortable and in conjunction with all the other stuff- participating in them ill advised!
Big metal plates in my knee
Level of annoyance: ✖✖
Treatment:
None
What it means:
The aftermath of tibial-plateau reconstruction means I have still have a bit of nerve damage to my foot and ankle and some metal bits stick out- a bit. Actually my ankle hurts more than my knee.
Life implications:
In general my knee is not really a big deal. I walk about 4-6 miles a day, with no pain.
The nerve damage means that I run with a limp, which means I generally avoid it. It doesn’t seem great for the rest of my body to limp-run. It also means no high heels (see above!)
The strangest annoyance is I can’t sleep on my side with my knees together- as the plates stick into the other knee. I have learned a new sleeping position, with one leg hanging off the bed!
Knowing I was writing this--and that my migraines seem to be nuanced--I wrote this up. Maybe if you are a migraine sufferer you will recognize it. Maybe you won’t. This kind of pain is almost always just below the surface.
When it really has me in it’s claws the pain and pressure start deep inside the base of my head where the top of my neck and my throat join. It comes from the inside out like a series of tiny flowing rivers or marching ants. It feels like something is moving and being squeezed at the same time- a mixture between strangulation, nausea and electricity that spreads along the back of my head. It pulls downwards and upwards and outwards, settling like a heavy weight behind my ears, a tightness in my neck and a throbbing in my crown (that bit right at the top of the head). If I keep doing stuff it shifts over the top of my head to the front eventually settling behind an eye or feeling like I have spikes pushing through my skull. It’s like the feeling you get when you pull out a chunk of hair or when you are getting the sensation back after having pins and needles. A sort of burning, smarting, pushing- like something is trying to get out. On these days I can’t concentrate, my left eye twitches and there is a sort of buzzing I can’t really identify.
The article below- published in December is also a good record of how I feel when things are not going well. As you will read in the “2 Years- Emerging” piece- these acute episodes are getting less frequent over time. More often now- it’s just a more constant- just under the surface thing.
Anyway. That.
Pain is notoriously difficult to describe. Here are some pictures that I collected on one of the bad days.