by Linda W. Arms
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?
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Thank you for posting this. I had a TBI from extended exposure of Carbon Monoxide. I almost died the day we figured out what the issue was. 11 years after, I still have memory issues, but the tingling, almost vibrating and electric shooting pains are still there when I try to process thoughts or feelings. It happens in different places in my head depending on the thoughts or feelings. I thought I was alone. We need more research on this as many of my doctors thought I was nutz when I tried to explain what was going on in my head. The sharp knife stabbing feelings have subsided but boy were they hard to endure.
You should check with your doctor before doing any of this since people with certain types of head trauma or aneurysms should not have this therapy. Here is an article telling you more about this therapy – https://www.healthline.com/health/cranial-sacral-therapy
I had a beating sensation in my head but there was no pattern. There would be beating in a couple different places that weren’t in sync with each other which was disturbing. It was more noticeable when I was fatigued. You might check in with someone who does craniosacral therapy – it helped me. Some physical therapists do it, also some massage therapists. I’d love to hear back from you if you do this and it works.
You should check with your doctor before doing any of this since people with certain types of head trauma or aneurysms should not have this therapy. Here is an article telling you more about this therapy – https://www.healthline.com/health/cranial-sacral-therapy
OMG I’m not alone! The flickers of lights coming from one side shooting to another was what I felt early in my recovery. The amplified sounds that even in a crowded room full of people then suddenly there was someone clicking their glasses sounded amplified makes me hypervigilant and feels like someone is behind me about to hit me w a glass! My eyes was painful from one side then the pain shoots to the other side. The deep penetrating pain in one spot then travels to another spot and the pressure in my head makes me scared that I will have another rupture. The intermittent sudden jerks of my hands, the generalize throbs and ticks all over my skin sometimes made me wonder if I am also at risk for parkinson’s. Lastly, that awful burning flesh/cable like smell that I get everytime Im tired. These I have to put up with since my BA rupture not to mention my short term memory lapses and confusion w words and places. I get you, we do understand😥
I feel numbness in my left foot and real soreness and tightness in my left leg. My injury was to the left side of my brain. Sadness and depressive moods particularly in the morning.
I found the mornings most difficult. It seemed like my brain could not wake up right. It would take me hours to feel functional. It’s much better now. Mornings are again the best time of day like they were before I had the injury.
I felt the tingly sensations in my body. yes, it’s odd too because for moments my hearing was accentuated…could hear things better for moments…and yes, the pain, the fuzzy light speckles here and there and I saw a flash of light fly like a falling star kinda light…during the night.
Oh my goodness! I found someone who knows! Who gets it! Yes! I was told I regressed in my healing, the pain, weird sharp pains would come back and all of this as you described. That includes lots of those waves. Thank you, I can share with family.
Thanks for the post Linda. I agree that after a while you realise that some of the things the doctors say are pure conjecture. we figure out a few things ourselves in the end, I think. we get to know our own condition and what happens when and what can help sometimes.
It is pretty weird. After a while I actually sort of enjoyed them once I knew what they were and I wasn’t imaging things. It can be quite the show!
It’s hard to remember exactly, because my brain wasn’t working then as it does now. It has been 15 years after all. Some of the sensations you mentioned seem familiar. I remember lying in bed praying so that the walls might stop moving. They didn’t seem to me to be still, when I knew they were.
Initially, I had a thing for exercising. I couldn’t (still can’t) remain on my feet too long, so I use a recumbent stationary or tricycle to get my cardio. I figured my brain needed oxygen & more must be better. Right? I think I took it a bit too far for years, but I credit that fixation for assisting my recovery.
It appeared to me that so many professionals tried to find “explanations” to answer many of our concerns. However years later, I realized a lot of that was pure conjecture. They had no clue. It makes a lot more sense to me later, but that is not when we want answers is it?
Be smart. Eat right. Get your rest. Exercise within reason, & only when your doctor(s) approve. Get out of the house! Volunteer. Get social if possible. Don’t push people to contact you, you’re probably different. Find a gifted psychologist. It took years to find the right cocktail of antidepressants to function in an acceptable manner. It still needs fine tuning from time to time.
Hello again, Mina. I will comment some more on the anti-inflammatory effect. I really don’t know what it did physiologically, although I wonder if my brain still had some inflammation.The change in thinking was a return of my head’s ability to “hold the whole session at once.” Since the accident I could still empathize and be a good therapist, but my thinking was Very linear. I could move moment by moment with a client. Upon taking the anti-inflammatory medication I found myself able to hold more info and choose to mention other parts of the session at strategic times. Why? I just don’t know. The inability to focus on things I want to do, significant depression and being easily over-stimulated are still with me. But, my ability to “be” with a client has gone back to how I would do it pre-accident. And yes, it’s Colorado for me, Colorado Springs.
dear Mina, i was a published writer before my injury and trained as a social worker, ad workers until the my kids were born, and had hoped to go back to it before MY bi…….Ifind writing so difficult now….as well as multitasking,as the world as i see it looks like i am on a merry-go -rond. I can’t stand the anxiety either., and getting frustrating is so unlike me, now it is so hard to control, but i do by going to my room by myself. it is so lonely.
Hi Karen, How long ago did your brain injury occur? Just know that things keep getting better. I just passed my 9 year anniversary and I can say I have seen a lot of improvements even in the last year.
karen I was a professional and a writer too. it gets easier. you find different ways, not the same way. it takes time. dont give up. find a good neuropsychologist. having someone to come eg once a week, who says whats happening here and what about this and helps you sort out the merry go round, is v helpful. even if they dont understand if they can just talk to nyou like a friend and ask you things like this and give you a hand or do some things when you are too tired, it really helps.
Mina I found your letter very familiar all of these things happened to me. I have been dealing with tbI for three and a half years along with ptsd. I have spells from time to time just about every week every thing from balance issues too my hips and both legs shutting down with extreme pain bad enough to put me on the floor. Just curious did you our anyone else have any anger issues thanks again for your letter. Rodney. S
oh My!!! this is exactly what i experience!!!…..all of it!!! it is disconcerting and sometimes frightening, and wearisome!!! i have had a brain injury for 4 yrs,,,,, I have explained the bunch of unrelated pictures as seeing letters and numbers plashing at the end of an old movie in black and white,,,, and i have each and every one of what you experience. I have told namy neurologists… no explanation, but my psychiatrist said it is the brain seeing things in bits and pieces , the processing being damaged somehow by the brain injury. THANK YOU for writing this!!! how far out are you with your injury? It gives me some hope that things will get better. Pleaswe take care!!
Hi Karen, Thanks for your comment. It was 9 years as of Jan. 15, 2015. I am so much better! AND even now, I still am getting better. I am so amazed and grateful for the continuous progress especially after most of my medical providers indicated after about 18 months you have experienced most of the improvements – it just is not true – at least not for me. You have to keep pushing yourself gently and appropriately challenging yourself (don’t put yourself or others in danger). It’s been quite a trip!
Mina, I so like receiving a piece of your writing! I feel less alone. And you write good stuff… After my brain injury I had light in the sides of my eyes for awhile. Apparently this is fairly common and is some sensation coming from the nerves… I’d like to comment also on the perspective I’m getting from all this. As a talk therapist for a quarter century I observed my accident as though someone just turned some switches in my head. No talking about it. Then, about a year and a half later a doctor prescribed an anti-inflammatory for my sciatica and I got my thinking back! All of a sudden I was thinking in the complexity before the accident. And no talk therapy did this, just a pill. So, I still believe in my work as a talk therapist, but I’m really finding out how much of our thinking is impacted by these nerve channels in the brain.
Hi Steve, Thank you so much for your very nice feedback. It’s become more difficult for me to write because life has gotten in the way but when I hear from someone like you I get re-motivated so “thank you”. When you say you got your thinking back after being prescribed an anti-inflammatory do you mean that you think the anti-inflammatory helped heal your brain so that you could function better? I have read that some brain issues are due to inflammation like possibly depression. Just curious about what can help. Anyway, thanks again for your comments. By the way, I’m in Colorado also – looks like that’s where you are at.