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The Brain Fairy At Work

After a brain injury there are many strange sensations in our head and body.    For me, the sensations began a few hours after my injury and have slowly decreased in intensity and frequency over the last years.   Sometimes, lying awake at night, I would notice these and be afraid because I felt that no one really knew what was going on up there in my brain.   Science still refers to the brain as the “last frontier”.    I felt I was in a strange, mystifying state where that “brain fairy” was doing its work that others did not understand.

I expect everyone with a brain injury has different sensations.   I’ve noticed from reading others’ experiences there seem to be some similarities.   How many of you felt the same things I did?

  • Flip-flops or butterflies in my head – it actually felt like there was a movement up there, sort of like waves, very strange.   It was not pleasant.  Sometimes very intense. I couldn’t do much of anything when this was going on.   The first hours after I got up in the morning were especially bad.   Sometimes I would just sit in a comfortable chair with my head back and let the “brain fairy” do her dance.   I could not stop it.   Nothing would stop it.
  • Bursts of light – during the many hours each day where I would be sleeping – before falling asleep or waking, there would be little bursts of light when my eyes were closed.   I’m not really sure if I saw these with my eyes or if it was just a sensation in my brain.   Again, very strange, very mysterious.   Almost like shooting stars.
  • Pains in my head – obviously my head hurt from the physical trauma but there were odd shots of pain in different places in my head.   Very quick.
  • Tingling, prickling and numbness – this was a rather obnoxious sensation I had in different parts of my body.   I would feel it in my face, my head, my hands and feet.
  • Slideshow at super speed – this is strange, I know.   As I woke, with my eyes still closed, I would see a bunch of unrelated pictures that would speed through my head.   It was like someone was running a slideshow in my brain but very fast.   I could not really focus on the picture but I could tell it was a person, or a scene or something.   I mentioned this to many of my medical providers.   Finally, one doctor said it was something called hypnagogic hallucinations.
  • Creepy crawlies – when I was very tired, usually in the evening, my entire being felt totally discombobulated, everything throughout my body felt unsynchronized.   It was a physical and mental sensation.  It was a disturbing sensation that was made worse by sounds and light.  There would be a throbbing in different parts of my body that was not in the same rhythm as the throbbing in another part of my body at the same time. I wanted to curl up into a tight little ball and be thrown down a dark hole were nothing could disturb me.

Thank goodness these things have faded.   They still come back sometimes but not to the degree they where in the early years.   Does any of this sound familiar to you?

About Mina K.

I am a TBI survivor. My website www.thebrainfairy.com is an information center and a source of inspiration for those with an injured brain, and for their caregivers, families and friends.

9 Responses to “The Brain Fairy At Work

  1. Gloria

    wow. I have the creepy crawlies, the lights exploding, the pain in my head, and the numbness that comes and goes. I had encephalitis about 35 years ago and have been experiencing those things since then. I’ve also had hallucinations which thankfully have stopped. My muscles have a mind of their own at times. I also hear loud clanging noises like metal striking metal. I don’t hear it with my ears but it’s inside my head. I have learned to live with these things but wish I could be normal and enjoy a normal social life. Thank you for posting. It’s good to know that I am not alone.

  2. dorothy mah

    Christine.
    While it is good to know that we are not alone in our injury, we cannot compare our deficits to others. No brain injury is alike. It depends on which part of the brain was affected in the trauma to the brain and how quickly treatment was administered after that. Some functions do come back in time as brain cells surrounding the infarct (cell death) can take over the lost functions. Some deficits unfortunately are permanent. The fastest recovery is in the first 3 months. Recovery can continue slowly for years after that. I asked my surgeon how long I would experience the tingly sensation in my paralysed left side. He said it might go away one day or I might just get used to it and not notice it any more. I suspect it is just a learned guess on his part. Anyway, I hope you get better each day. Focus on the things you still have rather than the things you have lost. I may have lost my left arm but i have since learned to do everything with the remaining good arm. There are many aids to help us nowadays. You’ll be surprised how strong you are to overcome your disabilities and get on with life. Keep in good spirits. Laugh often. i wish everyone well. God bless you all.

    • That is so very true – each brain injury is different. You are so very accurate about focusing on the things you still have – it is so important. You will probably also find that you are doing some things now that you didn’t do before and wouldn’t have done before that are a result of your injury and many of those things are really some very good things. Since my TBI, I have become a great swimmer – I swim about 1.5 miles, 3 or 4 times a week. I also learned how to make some very nice jewelry and started snowshoeing (instead of skiing for a while). I don’t worry nearly as much as I used to and I can easily let go of many things that used to drive me crazy.

  3. I also had a sensation of movement inside my head. To me it felt exactly as if my brain were a rag that was being wrung out, begining at the very core of my brain and working it’s way outward. I had it all the time in the beginning, then it only occurred when I would think too much or too long or overdid my physical exertion. This has not happened since I left my job and eliminated all possible external stressors from my life over a year ago. I wonder if this would return if I were to resume my previous activities. Tomorrow it will be 47 months since my MTBI.

    • It might, try it a little bit before going all in. I’m experiencing more symptoms in the last few weeks due to unusual stressors that I have no control over at the moment.

  4. I too am a survivor of a SAH, June 30, 2012
    I am so relieved to hear your stories and know that I am not the only one. It is comforting to know that someone out there knows exactly how I feel. Do any of you have permanent blindness in one or more eye? I have talked to many survivors that and its been good for my soul but I havent found even one to be blind like me :( I will feel complete when I do I just know it!

  5. I had a brain injury when I was 18, I felt totally dazed out as if I had lost a part of my brain… I felt empty and at times I would just stare out into space and not think of anything. Very weird feeling, plus the numbness comes and goes on my face and sometimes hands. I walk differently now its more like I can hear my bones move when I walk. The feeling of complete loneliness consumes me daily.. like nobody understands. Then the feeling of eye pain which is going on for a year and a half now.. doctors says its allergies but its swells and hurts so bad. The feeling of doubting yourself, losing self confidence and even the way I react to stuff is different, my emotions are all over the place, i get frustrated and sad very easily.

  6. Dorothy Mah

    I woke up paralysed on my left side after brain surgery to clip a giant aneurysm. It was strange not being able to move my left arm. It fell to the side when i lay on the bed. I had to move the arm with my good arm first or there was excruciating pain if left behind when i moved or sat up. I used to place the arm on my belly when i went to sleep. It was funny when i yawned as the arm would move on its own. I figured it must have been a bad connection in my brain. I have intense tingles and numbness on my left side. When i walk its like the left foot is walking on a bed of upright nails. At rest it feels like a prickly porcupine running up and down my left side. I cannot feel the left side of my mouth and my daughter often tells me to wipe away food there when i eat. The tingles are really uncomfortable. in the early days my forehead was literally numb from exhaustion by the end of the day. I get pains in my head. They are pains not headaches.

  7. Kelly F

    Many of these are familiar to me. I am just 5 months into my recovery from SAH and all these sensations scare me. Any little tick in my head, especially at night trying to fall asleep, scares me and I feel my blood pressure rise. I am hoping they subside over time. I am thankful for each new day.

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