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

12 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.

  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

  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.

  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.

  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.

  6. 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.

  7. 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)!

  8. 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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