Then And Now – Managing TBI Issues Over the Long Term


I am writing a series of pieces about managing TBI issues over the long term.

About a year ago, I put together a list of 84 ways TBI can make your life really interesting, which is a list of 84 different issues that can arise as a result of a traumatic brain injury. I pulled together the list from a number of different reputable sources — books, websites, papers — and sorted them by type, from behavioral to communication to mental to emotional, etc.

In the coming weeks/months, I’ll be writing about each topic in-depth. It’s probably going to take me a while, and I may not go in the exact order that’s below, but my intention is to discuss the different ways that I and others have found to address these issues. And by all means, if you’ve got anything to add, jump in.

Here’s the list, broken down by category:

Behavioral Issues

1. Impulsiveness

2. Aggression (verbal/physical)

3. Raging behavior

Communication Issues

4. Trouble being understood

5. Trouble understanding

6. Trouble finding words

7. Trouble communicating in general

Issues with Emotions/Moods

8. Agitated, can’t settle down

9. Angerrrrrr!!!

10. Anxiety – Feeling vague fear, worry, anticipation of doom

11. Depression, feeling down

12. Excitability!

13. Everything feels like an effort

14. Feeling unsure of yourself

15. Feelings of dread

16. Feeling like you’re observing yourself from afar

17. Feelings of well-being

18. Feeling guilty

19. Feeling hostile towards others

20. Impatience

21. Irritability

22. No desire to talk or move

23. Feeling lonely

24. Nervousness

25. Feelings of panic

26. Rapid mood swings

27. Restlessness

28. Tearfulness, crying spells

29. Feeling tense

30. Feeling vague longing/yearning

Issues with Day-to-Day Activities

31. Being overly busy (more than usual)

32. Feeling like you can’t get moving, you’re stuck

33. Feeling like you can’t get anything done

Mental Issues

34. Altered consciousness

35. Aura or weird reverie, trance

36. Trouble concentrating

37. Trouble making decisions easily

38. Trouble reading

39. Analytical skills suffer

40. Trouble telling what’s real or not

41. Being easily distracted

42. Being forgetful, can’t remember

43. Nightmares

44. Worrisome thoughts

Physical Issues – Eating

45. Food cravings

46. Eating less / more than usual

47. Heartburn / indigestion / upset stomach

48. Losing weight

Physical Issues – Head

49. Headache(s)

50. Stabbing pain(s) in your head

Physical Issues – Hearing

51. Hearing music others don’t

52. Ears ringing (tinnitus)

Physical Issues – Pain

53. Backache or back pain

54. General body aches

55. Joint pain or stiffness

56. Neck pain

57. Touch feels like pain

Physical Issues – Sleep

58. Waking up too early

59. Being fatigued / tired

60. Difficulty falling asleep

61. Waking up during the night

62. Sleeping too much

Physical Issues – Vision

63. Trouble seeing at night

64. Being sensitive to light

65. Double/blurred vision

66. Spots, floaters, or blind spots

Physical Issues – Sensations

67. Your skin feels like it’s crawling

68. Feeling like you’ve gained weight

69. Sensitivity to cold

70. Sensitivity to noise, sounds

71. Smelling odors / fragrances that others don’t smell

Physical Issues – General

72. Feeling dizzy / have vertigo

73. Your heart races or pounds

74. Hot flashes or sudden feelings of warmth

75. Losing consciousness / fainting

76. Metallic taste in your mouth

77. Muscles spasms or twitching

78. Muscle weakness

79. Seizures

80. Nausea

81. Sexual desire feeling off

82. Skin breaking out / acne

83. Hands or feet swelling

84. Vomiting

23 thoughts on “Then And Now – Managing TBI Issues Over the Long Term”

  1. I certainly can relate to your whole list. I have a 39 year old son and he has all those problems, which get hard to handle. I am interested in your input, thanks.

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  2. Hi Bert –

    The one thing that has helped me more than anything, is exercise. It helps everyone, but especially folks with anxiety and TBI issues. It’s really good for your brain. If you have the time and ability, you may want to consider starting to do some exercise with your son — it’ll be good for you both!

    Also, rest is very important. If you get enough exercise, rest comes naturally.

    Thanks for writing. I’ll continue to write about these things.

    BB

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  3. My daughter recently suffered a skull fracture and subdural hematoma – aka traumatic brain injury – and is suffering many of the symptoms you have listed and some you haven’t. One recent symptom is that she reports is that she felt someone touch her. She said it felt like cold finger rub her arm. I am just wondering if any one on this site has heard or experienced this symptom. Thank you, for your help, a concerned mom.

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  4. Hi Annie,

    I’m sorry to hear about your daughter. I have not heard about having those kinds of sensations, but I would imagine that since all sensation really arises in the brain (the body is a kind of “receptor”), that a TBI could cause this kind of experience to happen.

    Although I don’t know the source of this issue, I do know that the way we interpret these experiences can have a big impact on how our recovery from TBI goes. If your daughter is frightened by the sensation, thinking it is somehow dangerous, the adrenaline gets pumping, she gets scared, and it can amplify all of her issues. It can become very stressful. On the other hand, if she interprets the experience as something positive — like it’s an angel reminding her that they are near (and since angels have no physical bodies – as far as I know – it would make sense that the feeling of them touching her arm is cool), or if she thinks of it as her brain reminding her that it’s waking up again — then that may change her experience and help reduce the stress.

    What we tell ourselves about our injuries is really key. That’s what I’ve learned over the past several years. We can interpret our experiences as signs that we are damaged and useless, or we can interpret them as signs that we are as human as the next person and are taking steps to get better. So much of it is in our outlook and our orientation.

    I tried Googling what you’ve described, but I didn’t find anything right away that sounds like what your daughter is experiencing. Again, it sounds like that part of her brain being activated. You could check out brain maps online – Google “brain maps” or “brain mapping” and see if you can find any relationship between the area where her injury is/was and the experiences she’s having — I found an image here: http://hiddentalents.org/brain/113-right.html and here http://hiddentalents.org/brain/113-left.html

    Good luck to you and your daughter. The main thing is to not let the stress of the unknown get to you both. Doing progressive relaxation and breathing exercises can be very helpful in keeping your/her nervous system(s) chilled out, so her brain can do what it needs to do.

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  5. What a great list I have a 26yr old son with MTBI were on year four of the battel. One problem we have is when people look at him and say he looks fine whats wrong with him? Im going to give them your list..and blow there mind wied open. He has had every thing on the list at one time or another things come and go and come back. its all on a day to day. for those of you who have TBI chin up keep fighting its resources like this that help us educate those who cant understand the broken brain.

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  9. I just discovered this completely brilliant blog, and would like to thank you HUGELY for making this “enlightening” and invaluable resource available to the wider world. I will be referring to it often and will, hopefully, be making my own “tiny” contribution towards the ongoing dialogue in the near future.

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  11. Thank you SOOOO MUCH for this information. I have been having most of these issues daily. I had a TBI in December in which I passed out and hit my head on a wood-burning stove. I had a really bad concussion. These blog really helped calm me down. With all the weird things going on, I thought I was dying.

    Thanks again. You are a lifesaver (a red one, the best kind)!

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  12. Hey, thanks for writing Rob. I really appreciate hearing that this has helped you. I’m glad my experience is coming in handy for others. Hang in there and don’t worry – it does get better. Just take good care of yourself, be easy on yourself, eat good food, and get plenty of rest and good exercise. Spring is here, so make the most of it. Easy does it… Cheers BB

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  13. What isn’t mentioned, and I believe, is The Most Important Therapeutic Activity that can be done is:
    -Socialization!
    It is More Important Than any Medication or Therapy. Period

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  14. HI, IT’S REALLY GOOD TO HEAR OTHER PEOPLE’S EXPERIENCES. I JUST DON’T REALLY KNOW WHAT HAPPENED TO ME! TRYING TO PRETEND NOTHING HAPPENED FOR MY 6 YEAR OLD SONS SAKE. SO NOT TALKING TO ANYONE I KNOW ABOUT THIS. DOES EVERYONE ELSE FEEL WEIRD IN GENERAL??? I’M A 35 YEAR OLD WOMAN AND 2 MONTHS AGO AFTER MONTHS OF HEADACHES, SICKNESS AND RAPID WEIGHT LOSS MAKING ME 38KG/6 STONE, I BECAME DIZZY AT WORK SO WALKED TO THE SUPERMARKET (THANK GOD I DIDN’T DRIVE) WHERE I SUDDENLY HAD IMMEDIATE STAB PAIN SOMEWHERE DEEP BEHIND MY EYE. I LOST CONSCIOUSNESS AND THE FALL CAUSED A LARGE SKULL FRACTURE AND WOUND. BECAME CONSCIOUS IN 1ST HOSPITAL IN MRI SCAN BUT COULDN’T REMEMBER MY DATE OF BIRTH/WORDS/NUMBERS. I WAS MOVED TO ANOTHER HOSPITAL AND HAD A CRANIOTOMY FOR A SUBARRACHNOID HAEMORRHAGE (ABOUT 3 HOURS AFTER FALL). MY MEMORY WAS BAD, I’VE FORGOTTEN MOST OF THE LAST 8 MONTHS. I OFTEN FEEL AS IF SOMEONE HAS TOUCHED (OR SOMETHING IS CRAWLING ON) MY ARMS, LEGS OR FACE, (ESPECIALLY ON THE LEFT SIDE), THIS MAKES ME JUMP WHICH PROBABLY LOOKS QUITE WEIRD. PINS AND NEEDLES PAIN DOWN LEFT SIDE. I ALSO HAVE SPOTS WHICH I’VE NEVER HAD MUCH TROUBLE WITH BEFORE, AGAIN MUCH WORSE ON LEFT SIDE. DUE TO FRACTURE ON RIGHT AND CRANIOTOMY ON LEFT I REALLY CAN’T SLEEP LYING DOWN YET AND TIREDNESS MAKES THE HEADACHES WORSE. I’VE BEEN BACK AT WORK FOR 3 WEEKS NOW AND AM GETTING REALLY SURPRISINGLY ANNOYED WHEN PEOPLE ASK ME HOW I AM AND TELL ME NOT TO LIFT ALL THE TIME. I SHOULDN’T REALLY BE ANNOYED AT CONCERN BUT IT’S REALLY GETTING TO ME FOR NO APPARENT REASON. I KNOW I’M LUCKY TO BE ALIVE BUT I’M FINDING THAT CONCERN DRIVES ME MAD. I FEEL UNGRATEFUL AND REALLY GUILTY ABOUT BEING A NUISANCE. THE DRS COULDN’T EXPLAIN WHAT HAD CAUSED WHAT OR FOR HOW LONG A PROBLEM HAD BEEN THERE, SO I DON’T KNOW WHAT TO EXPECT IN FUTURE. I’M STILL QUITE BALD AND FEEL LIKE I’M SEEN AS A VERY ILL PERSON DESPITE BEING VERY LUCKY. I KNOW HAIR GROWS BACK AND PAIN IMPROVES BUT I’M SO FRUSTRATED WITH THE PAIN. IT’S EARLY DAYS BUT SEEMS LIKE A WEIRDLY LONG TIME TO ME. HOW DOES EVERYONE COPE IN THE LONG RUN. I’VE DROPPED BACK INTO MY NORMAL LIFE QUICKLY BUT DON’T FEEL RIGHT. I THINK I WOULD LOVE TO HIDE AWAY IF I HAD A CHOICE. I DON’T KNOW IF THIS IS ALL NORMAL. SORRY I WENT ON AND ON.

    YOU ARE ALL VERY BRAVE.

    KATE X X X

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  15. Hi Kate –

    No worries. Your concern is totally understandable. I have lived with chronic pain and headaches for over 20 years, now, and it is no fun. It is also no fun to have people constantly concerned about you and “coddling” you. Of course, you want to get back to your old self, your old normal way of life. The thing is, you had some pretty heavy stuff happen with you, so you’re going to need to adjust.

    I find it helpful to think of TBI like a tornado that comes through and trashes a town — some roads and houses it completely trashes, others it leaves standing. In some cases, the parts it tears up, you can’t tell how bad the damage is until later — and then you need to rebuild slowly. Take your time and get plenty of rest, and keep a journal of your experiences. It can help you figure out what makes things worse and what makes them better.

    For the pain and the crawling feelings, I know how you feel. I am very tactile-defensive — sometimes it feels like someone is ripping the skin off my arm, when they just touch it. If I pull away, they get angry with me, because I seem to be rejecting them. But it just hurts too much, so I can’t be touched sometimes. That’s been pretty difficult to deal with, and it hasn’t helped my relationships.

    I have found some things that help — learning to relax, which actually very helpful at getting the body rested. Even if I cannot sleep, doing progressive relaxation helps my body chill out. It sounds like your whole system is still on high alert from everytihng you’ve been through, so relaxation can help a lot.

    I also do some traditional Chinese exercises that help the “meridians” — the pathways of energy that go through our bodies. I get books out of the library and try things in them. Sometimes they help, sometimes they don’t. If nothing else, they keep me occupied.

    I’ve got to go to work now, but I want to wish you well. If people want to show concern, then let them — they may feel very helpless and not know what to do for you. Sometimes if you ask people to do things for you — little things like passing you the salt at lunchtime — it can make them feel more involved. People really want to help and support each other — as much for themselves as for others.

    Have a good day, as best you can.

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  16. My TBI happened back in 1969 when I was 16. I had a car accident. I had a head injury, chest injury, ruptured spleen and required 13 pints of blood to survive. My family was so concerned about the operation that they didn’t give much thought to the brain injury. I was unconscious for four days. No one really ever seemed that concerned about the head injury and I didn’t think about it much either. I knew that the way I felt emotionally was different than before. No one ever really wanted to talk about the accident later. My family in fact asked people not to bring it up to me. I changed so much after the accident. I thought I was just upset because all three of the people in the other car died. My life seems to have been one disaster after another since. I have been married four times, my daughters have both had loads of trouble growing up. Sometimes I still feel like the 16 me inside. It’s like I never grew emotionally. I have lost jobs, friends, family and to be honest I just really don’t care. I cry not because of the lose,, but because I don’t feel anything. I am on antidepressants and high blood pressure medication. I don’t know what else to say.

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  17. I’m very sorry to hear about you and your family’s difficulties. That seems to be pretty much how things were handled bsck in the 60s. I had some brain injuries in the late 60s and like you, it wasn’t talked about. I can also relate to the lack of feeling. That is sometimes the case with me, but it feels like a relief… no, come to think of it, it doesn’t feel like anything.

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  18. My husband had 3 subdural hematomas and a contusion from an accident 9 years ago. This year his anger issues are getting to be scary and I have been pushed down and am scared to say anything in disagreement. Is it possible this is from his accident? It will be very difficult for me to convince him of this if it is.

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  19. It could totally be that. It can be cumulative, as our brains change in life… and also as the stresses catch up with us. It’s important to get help, if you can. I’m not sure where you live, but a TBI specialist might be able to help — and help you both work on it together. You need to feel safe and not be in constant fear.

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  20. My daughter has TBI from soccer in 4/2015 also slight in normality in the lower brain stem which effects her emotions . She has experienced everything on your list but recently started passing out one day at work three times in less than one hour and one more time on the way to the er. They don’t know what’s wrong with her ran more test EKG blood work cats can X-rays ect so lost?? Mom

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  21. I’m sorry to hear that. Some things that might be worth considering: TBI can affect the autonomic nervous system — the part that controls our heart rate, blood pressure, digestion, and other internal organs. It can also affect the endocrine system — hormones, which affect much, much more than just your sexual maturity. You may want to see an endocrinologist who knows about TBI – I think there are neuroendocrinologists, but you may not have access to one. If you ask around, make sure they know about her TBI and check if they have any experience treating concussed teenage girls. (I assume your daughter is a teenager, by the way.)

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  22. Maria Freitas
    My son had an injury in the same area. One thing that he had for several months was orthostatic hypotension. His blood pressure would drop severley when standing up. He passed out once and almost passed out on several occasions. He was on medication for it for approx three months and it eventually cleared up. It was from a lack of communication from the brain to heart. It did clear up over time. Mention that to ny doctor you might see.

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