Advice · Headaches and Pain · Personal Blog Posts

Headaches and pain after (traumatic) brain injury

I haven’t written much about the pain of living with a brain injury, I think this is because I am just so used to living with it. I imagine most of you are? The past few months however I’ve been experiencing new forms of pain and headaches, as well as talking about it which makes me think about them more. So I’d like to write this blog post to let you know you are not alone in the pain you feel, headaches are one of the most common symptoms after a (traumatic) brain injury. I’ve tried describing the pain to family and friends and it is so hard, especially as I haven’t spoken about the pain for years. All I’ve come up with so far is “It feels like I’m frowning inside“. Another way I can explain is:

I feel pain all the time. I wake up each morning in pain and with a headache that stays with me all day long, other kind of headaches and flashes of pain come and go (some staying for hours). I go to bed with all this pain… A headache cocktail that no one would want to drink or experience. I haven’t had a headache free day, hour, minute or second since before my brain injury and surgery. No, I am not exaggerating.

I’ve been working on this blog post for a couple of days after thinking over and over to myself and coming to the realisation that ‘My head is so delicate’ and this scared me, especially as it’s been five years since my brain injury. So I guess as well as writing to let you know you’re not alone I’m writing to let myself know I’m not alone.

Let’s start with pressure pain because that’s what made me come to this realisation. While doing bench press I re-adjusted by body using my head, it sounds stupid now but I didn’t think about it at the time and as I write this I relive the pain, it makes me wince… Pressure, so much pressure. It was like someone with giant hands was squeezing my head and they were on a mission to make it pop. This makes sense because I did this on a hard surface, but this happens when I roll over in bed on my pillow, possibly the softest thing ever?! I have to lift my head completely off and then roll but sometimes I’m too tired to remember so I feel that same pain.

Here are the types of headaches and pain I experience, every day.

Pain and headaches I experience:

  • Constant headache at the back of my head, sometimes just the left or right side or sometimes the whole back of my head
  • Constant forehead
  • Tight
  • If I lay flat on my back it feels like my brain is being pushed to the back of my head and I get a stabbing pain in my burr hole
  • Headaches where it feels like someone is squeezing a piece of string around my head
  • Whole head headache: Dull, tight, throbbing, constant
  • Sometimes when I bend over it feels like my brain is being pushed to the front of my head and I get a stabbing pain in my burr hole. The pain only goes away when I stand up, but I have to do it slowly so my brain doesn’t feel like it’s bouncing.
  • Pressure on each side of my head feels like someone is squeezing as hard as they can with their fingertips.
  • Flashes of pain that last for a few seconds but make me stop what I’m doing to hold the pain (like when you have foot cramp and your instinct is to squeeze your foot to help with the pain)
  • Vibration pains when I walk

Burr hole pain I experience:

  • Constant dull ache
  • Stabbing pain
  • The pain that something feels loose
  • The pain that something inside is vibrating
  • Flashes of pain that last for a few seconds but make me stop what I’m doing to hold the pain (like when you have foot cramp and your instinct is to squeeze your foot to help with the pain)
  • Vibration pains when I walk

Scar pain I experience:

  • Tight pain
  • Stabbing pain
  • Flashes of pain that last for a few seconds but make me stop what I’m doing to hold the pain (like when you have foot cramp and your instinct is to squeeze your foot to help with the pain)
  • Squeezing pain
  • Sun burn in the summer if I forget to add sun cream

Nerve pain I experience:

  • I can feel the nerves in my brain moving, usually only one at a time. The pain slowly makes its way up the nerve

Sitting down to write this blog post the descriptions came so easily but I had no idea that I experienced this many different types of headaches and pain. How do I begin to feel about that? Especially as it’s been five years since my brain injury, I imagine they will stay with me forever.

Good news though, I’m currently trying to get some medication for them as yep you guessed it… Paracetamol and Ibuprofen don’t help. I’ve just moved and the local GP doesn’t have my records yet, but I’ll keep you updated. I did try Amitriptyline before I moved but it didn’t help

What has writing this blog post made me realise? My head is tender, my brain is tender and so very delicate. I should have come to this realisation sooner (especially as I have a titanium plate on top of my skull…) but sometimes it takes the littlest things to notice the big things.

Some advice if you also suffer from bad headaches:

  • Lay down in a dark, quiet room and try to relax
  • Avoid bright lights if you can
  • Set your phone to night mode at all times, it takes away the bright white light of a screen and replaces it with a warm orange light/colour. It works on iPhone but I’m not sure about other phones. Go to Settings>Display & Brightness>Night Shift> Select Scheduled> From 00:00 to 23:59 (It will look like this)
  • See your doctor, try and get some medication that works for you

Do you have any advice you’d like to share?

 

Illustration by Fran Krause: Deep Dark Fears

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2 thoughts on “Headaches and pain after (traumatic) brain injury

  1. My injury was a concussion 4 years ago. I have had chronic headache ever since. Daily “tension-type” which are a band around my head that tightens. I get migraines 3-4 days a week, as well, which feel like a balloon in my skull. If I lay flat on my back in a dark, quiet room, the pain isn’t bad, but any motion, even rolling over makes the pain horrid. I also get stabbing pain that lasts a few seconds several times a day. I have tried several medications, acupuncture, medical marijuana, massage, sacral cranial massage, chiropractic Care, and other things. But, really mediation works best for me. It makes the pain bearable, but doesn’t get rid of it. But, my quality of life is better.

  2. The blue light emitted from computers, phones, fluorescent lighting, & many other sources can affect injured brains, f.lux (most anything) & Twilight (mobile phones & tablets only) are apps you can download to filter that out. I also wear a hat with a brim, sunglasses indoors & use a cane when I go somewhere with fluorescent lighting. At home I wear a stocking cap so my head stays warm, seems to help minimize pain. I still get headaches daily, but these tricks help minimize the severity & some of my triggers.

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