Q and A For Today – #concussion, #TBI #recovery, reduced intellect, and more

brain-experiencesFor today, dear readers, we are taking a look at the after-effects of concussion / TBI. Here’s what people are looking for online:

  • tbi recovery 2016 – We’ve come a long, long way, over the years. The biggest gain, that I can see, is how people have gotten it through their heads that the brain is plastic — it changes constantly — and just because you lose some function in certain areas, doesn’t mean you’ll lose all ability to function, all across the board. The brain recruits different areas to do different things. It’s got a bunch of “second string” capabilities that it can draw in. And in fact, some neuroscientists are focused more on the whole “connectome” than isolated areas of funcationality — like Broca’s and Wernicke’s.
  • concussion cause hypochondria – Why yes, yes it can cause that. I have seen it many times. And I’ve seen it in myself. Concussion can make you hyper-sensitive. And it can put you on high alert. First, your brain has been shaken up, and it’s in crisis. It’s working overtime to get back on track, to reduce the amount of “gunk” that gets released, when it’s injured. And at the same time, it has less energy to do so… and you get the picture. That’s a potent recipe for HIGH ALERT, which of course makes every single symptom seem worse. Concussion can make every sign of discomfort into a major concern. It can turn you into a hypochondriac. If you focus on chilling out your system, and you get your fight-flight response under control, the hypochondria can calm down. But if you keep the fight-flight going full-speed-ahead, little things can — and will — continue to seem like BIG THINGS, and you’re in for a ride.
  • reduce intellect after car accident – Yep, that happens. It’s not necessarily permanent, though. Again, after you get concussed (like in a car accident), your brain is impaired. It just isn’t working as well as it could, because it’s struggling with clearing out the gunk that got released in the injury, and at the same time, it’s having an energy crisis, because it can’t get the energy it needs. It’s a problem. But it doesn’t have to be permanent. Remember: After concussion – you’re not stupid, it just feels that way
  • is it normal after a concussion to experience weird things – Why yes. Yes it is. Your brain is not processing stuff the way it normally does. Your senses can all be heightened, or they can be dulled. You can experience anxiety, mood problems, neck aches and pains, headaches, post-traumatic migraine, ocular dysfunction, vestibular problems, difficulty with balance, strange senses of motion, lack of coordination, cognitive fatigue, concentration issues, and more. You can also start to feel every little thing (see the hypochondria entry above). And the world around you can start to feel like a very strange place. This completely, 100% normal. And it passes. When your brain sorts things out… clears out the gunk… figures out how to get energy again… and adjusts to the new “pathways” that information needs to follow… life starts to feel normal again. It might be different than before (that can feel weird), but you’re getting back to normal, and your brain is back to doing what it needs to do. Adjust. Experience. Grow and change as life takes its course.

You just gotta hang in there and work with it. Concussion / TBI is not easy, but it doesn’t need to be the end of the road.

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84 ways TBI can make your life really interesting

Some time back, I compiled a list of possible issues TBI can introduce into your life. I combed through a bunch of sources and then put them all together, took out the duplicates, and came up with a list of common complaints related to traumatic brain injury. I’ve refined the list over the past couple of years, and I’m sure there are more issues I’ve missed, but this is what I’ve  been working with, thus far.  These apply to mild, moderate, and severe. And a lot of them are problems I have dealt with on a regular basis throughout the course of my life.

Here’s the list, broken down by category:

Behavioral
1. Impulsiveness
2. Aggression (verbal/physical)
3. Raging behavior

Communication
4. Trouble being understood
5. Trouble understanding
6. Trouble finding words
7. Trouble communicating in general

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

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
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 – Eating
45. Food cravings
46. Eating less / more than usual
47. Heartburn / indigestion / upset stomach
48. Losing weight

Physical – Head
49. Headache(s)
50. Stabbing pain(s) in your head

Physical – Hearing
51. Hearing music others don’t
52. Ears ringing (tinnitus)

Physical – Pain
53. Backache or back pain
54. General body aches
55. Joint painf or stiffness
56. Neck pain
57. Touch feels like pain

Physical – 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 – Vision
63. Trouble seeing at night
64. Being sensitive to light
65. Double/blurred vision
66. Spots, floaters,  or blind spots

Physical – 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 – 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

Now, some of them might look like they are duplicates — #3. Raging behavior should be grouped with #9. Angerrrrrr!!!, right? I’ve actually split them up because one is behavioral, and one is emotional/mood related. Just because you’re angry, doesn’t mean you’re going to have raging behavior, but anger can still be a significant problem.

One thing that struck me, as I was compiling this list over the past few years, is how many of the symptoms are physical. It almost doesn’t make sense. You injure your head, you hurt your brain, and your body starts acting up? Where’s the sense in that? Well, considering that the brain is like the command center of your body, I guess it does make sense.

The other thing that has jumped out at me, as I’ve considered this list over the years, is how the non-physical issues can often arise from the physical. Being dizzy all the time can really mess with your head, and it can make you cranky and mean and short-tempered. Likewise, having constant ringing in your ears can shorten your fuse and make you much more temperamental. And chronic pain has a way of depressing the heck out of you.

Now, not everyone with a TBI will have these issues, but lots of people will have one or more of these problems, and lots of them can come and go over time. It’s just one more handful of pieces to the puzzle that is TBI. A big handful, actually.

Better today… of pain and ptsd

Well, I got to bed by 10:00 last night, and I was able to sleep through till 6:30 or so, which is an improvement over what I’d been able to do over the last weeks.

I’ve been kept up by anxiety over what my neuropsych evaluation is going to reveal — that’s coming up this week — me being terribly afraid that I had given wrong information or I just couldn’t think my way through certain things… I’ve been second-guessing myself for days and days, wondering if I answered as accurately as possible… of if maybe I’m more crazy than head-injured… or that my head injuries have led to some sort of mental illness that’s invisible to me because of my anosognosia… or maybe I’m just on this wild goose-chase that will end up being all for nothing.

I try to be level-headed and logical about this and remind myself that my neurpsych has been doing this for many years, and they have certainly seen worse cases than me. But still, not being able to be a full participant in the process and being a subject of examination and enquiry… well, that makes me uncomfortable, and even if I do trust the doctor. I just don’t know what to expect, and I cannot manage my wild rang of emotions, if I don’t know what I’m managing for.

Fortunately, I do feel better this a.m. — not so much pain, not so much tenderness. I got a bit of a massage yesterday p.m., and it really, really helped. Even if it was painful at times — I don’t care. Short-term pain for long-term benefits. I’ll take the pain in the short-term, if it will help me feel this much better in the a.m.

I still have discomfort when I move – especially in my hips and lower back. And my elbows are still sore. And my thighs are still tender. But I can push up my sleeves, so they’re not chafing my wrists, and my body isn’t screaming so loud I can’t hear myself think.

I tried the Arnica yesterday. i can’t say I noticed an immediate effect, but I’m going to keep trying it — 4 tablets dissolved under my tongue 4 times a day, for a few days. I’m going to take it again after I finish my cup of coffee. (I’ve heard that you have to be careful taking homeopathic remedies when you’re eating or drinking. It’s my understanding that the remedy needs to be the only think you can taste… or I could be wrong.) I’m not off caffeine entirely — that would be too much. But I am cutting back. I only had one cup yesterday, which I think helped me sleep.

This arnica experiment is definitely going to be totally screwed up by my other changes I’m making. In a “real” test, the only thing I would change would be taking the arnica, not getting more sleep or changing my diet or getting more exercise. But dude, I’m in pain, and I need it to stop, so I can get on with my life.

Thinking about the role that pain has played in my life, I think there’s a definite trauma aspect to it. I have friends who specialize in treating trauma, both in medical and psychological environments, and they talk a lot about it. They also love to tell me I’m a “trauma survivor” — having had a whole bunch of accidents that left me progressively more impaired, as the years went on, along with the social, interpersonal, and physical after-effects of my impairments that haven’t helped me get by in the world.

And since I have a history of trauma — physical, as well as psychological — I have to admit I do show signs of PTSD.

Over at Wikipedia — http://en.wikipedia.org/wiki/Posttraumatic_stress_disorder — I found this (note: my comments are in italics):

The diagnostic criteria for PTSD, per the Diagnostic and Statistical Manual of Mental Disorders IV (Text Revision) (DSM-IV-TR), may be summarized as:[1]

A. Exposure to a traumatic event – multiple head injuries over the years, along with other accidents and fights/clashes with people that threatened my safety
B. Persistent reexperience (e.g. flashbacks, nightmares) – I’ve had lots of them over the years… where do I begin?
C. Persistent avoidance of stimuli associated with the trauma (e.g. inability to talk about things even related to the experience, avoidance of things and discussions that trigger flashbacks and reexperiencing symptoms fear of losing control) – some things I just will not talk about… you can pump me for details till the cows come home, but I’m not talking about certain things that have happened to me, unless I can know that it’s not going to ruin my life, if I do
D. Persistent symptoms of increased arousal (e.g. difficulty falling or staying asleep, anger and hypervigilance) – well, yuh, I’ve had more restless nights and being jolted awake at 3 a.m. with my heart racing and my body soaked in sweat… than I care to think about
E. Duration of symptoms more than 1 month – try months and months… sometimes years later, after the initial event is over
F. Significant impairment in social, occupational, or other important areas of functioning (e.g. problems with work and relationships.) – just ask my friends, family, and co-workers… just ask my 17 former employers

Notably, criterion A (the “stressor”) consists of two parts, both of which must apply for a diagnosis of PTSD. The first (A1) requires that “the person experienced, witnessed, or was confronted with an event or events that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others.” The second (A2) requires that “the person’s response involved intense fear, helplessness, or horror.” The DSM-IV-TR criterion differs substantially from the previous DSM-III-R stressor criterion, which specified the traumatic event should be of a type that would cause “significant symptoms of distress in almost anyone,” and that the event was “outside the range of usual human experience.” Since the introduction of DSM-IV, the number of possible PTSD traumas has increased and one study suggests that the increase is around 50%.[48] Various scales exist to measure the severity and frequency of PTSD symptoms.[49][50]

Now, this is all pretty thick stuff for me to get into. Personally, I don’t feel like I can take on much more to process, other than just dealing with my own pain… but I have to say, the pain is worse, when I’m feeling the after-effects of some past trauma. When I’m dealing with people who have really physically hurt me in the past — like adults who used to really knock me around — or I’m interacting with people whom I have hurt in the past because of my bad behavior and poor social integration.

When I think back on being a kid, I remember a lot of pain, both from internal sources and from without. My pain issues date back to fairly early childhood – I was not a very limber kid, and I had a lot of difficulty doing things that other kids could just do, like touching toes and climbing and jumping and doing cartwheels and such. I had a lot of trouble with my balance, and I couldn’t do a somersault until I was about 5 or 6. I can’t remember exactly how old I was, but I do remember the day I did my first “real” somersault — I didn’t fall off to the side, but was actually able to just roll right over and keep my balance. When I tried to stretch and extend, like other kids could, it was very painful for me. But I kept trying, and I just forced myself to stretch and extend… until the pain was too much, and I had to stop… which was usually far short of where I wanted to be.

I wanted so much to participate, to take part, to be a part of what was going on. I hated being on the outside, not able to do what other kids could as easily as they could, so I pushed myself — very hard. There was a lot of pain, but that was just the price I paid for being able to be a part of what was going on.

The other source of pain was from the outside. I was raised by parents who didn’t know how to relate to me. I tended to get over-stressed and over-extended with all the stimuli going on around me (including the pain), and they tended to discipline me. Grab me. Jerk me around. Take hold of my arms and pull me to where I was supposed to be. It was excruciating, and it was shocking. My memories of childhood are full of instances where my mom would grab me out of the blue — I wasn’t following what was going on, and I didn’t understand what she wanted me to do, so she would yell and/or grab me and pull/push me to where I was supposed to be. With my sensitivities, it was like just being pounded out of the blue, time and time again. I could never prepare for it, I could never brace for it. And I didn’t really “get” why it was happening, a lot of the time.

I wasn’t able to explain my “bad” behavior to them, and they didn’t seem much interested in finding out if I was having problems, or if I was just a bad kid who needed discipline. I think, because of their religious orientation and the role that my very religious grandparents had in our lives, they “went with” the religious explanation that I was a “sinner” and that “sin” or the “devil” had taken hold in my life, so I needed to be disciplined to stop my acting out.

So, they did. I got called a lot of names, when I was little, because I couldn’t keep up cognitively or physically — spaz, space cadet, bugger, doofus, spastic… that was my dad. My mom preferred to call me pathetic or disgusting or asinine (asinine was her favorite). I was actually shielded from their wrath a lot, because I didn’t understand till I was 7 or 8 or 9 (?) that they were actually talking to/about me. I thought they were just saying what they were saying into the blue. It didn’t occur to me, till I had been in school for a few years, and other kids were calling me names, that my mom and dad were calling me names, too.

Actually, come to think of it, it didn’t occur to me that my mom was calling me names, till a few years ago. Somehow, being mistreated by my mother is a lot harder to take than being mistreated by my dad.

Even when they showed affection, my family’s hugs and touches were extremely painful. My family — for whatever reason — loves to give big, hard hugs, and it hurts like crazy when they do! I don’t know what it is that makes them think it’s okay to just throw their arms around someone and squeeze so hard… or maybe they can’t really feel it, themselves, so they have to have hard hugs and forceful contact, to even tell someone is there. My grandparents were hard huggers, and my mom was/is, too. She loves to reach out and grab people as a sign of affection, which is a double-whammy — I don’t want to shut her out, but I cannot take the force of her contact. Just over Thanksgiving, she was walking by me, and she reached out and grabbed my arm as a sign of affection. And when I was getting ready to drive home, with the weather being as rainy as it was, she got scared for my safety and she just threw herself at me and hugged me really hard, which really hurt.

I still haven’t figured out how to tell people that when they touch me, sometimes it feels like they’re pounding on me. It’s embarrassing, it’s troubling, and I dread people knowing just how much pain they’ve caused me. Being in pain is bad enough, but then “spreading it around” by telling others about it — and telling them there’s nothing they can really do, but keep their distance — is just awful. I’ve done it before, and it’s awful. Awful to be pushed out to the margins. Awful to be forced to push people away. Awful to have to hold them at arm’s length and never let them close, without pain.

Thinking about growing up in constant pain, raised by people who repeatedly hurt me terribly, is definitely not easy to take. I have to tell myself my parents weren’t fully aware of the effect that their behavior was having on me, and that if they’d known what it was like for me when they grabbed me or hugged me, they would not have done it. I have to tell myself that they had no idea, that they were innocent. Believing that my parents would intentionally harm me, is more than I can process right now.

But it’s probably worsening my pain, to hold back from that belief. Now that I’ve been away from them for a whole day, I’m starting to relax, and I’m starting to be able to adddress my pain. I think when I was in the midst of it all, I was so shut down that even if I’d been in terrible pain — which I may have been — I wasn’t aware of it. I was up in my head. I was too busy talking. I was too busy trying to stay out of arm’s reach of both my parents.

I rarely notice until days after the fact, but when I am in the midst of family at holiday/Thanksgiving time, I hold as still as possible for long periods of time — both as an attempt to not draw attention to myself, and to keep myself from acting out when I get stressed. When I’m stressed, my brain stops working really fluidly, and I end up needing to take more time to explain myself. But when things are all wild and woolly, like at my parents’ place at Thanksgiving, I don’t have the time to fully explain myself, and I end up hurting people’s feelings from a poorly told joke, or an attempt to josh around with others, and then I start flashing back to all the other times I said/did things that people took the wrong way.

Yes, I hold very, very still during the holidays… both for my own protection and that of others.

And it probably doesn’t help my pain — because of my rigidity and my disconnection from my body.

And it doesn’t help my PTSD. Because I go back to that place where I’m on auto-pilot, where I’m just keeping my head down and keeping moving, where I’m just doing what’s in front of me, and not aware of whether or not I’m hungry or tired or anxious or stressed. And when I’m not aware, when I’m just soldiering through (as I do so well!), I tend to push myself even harder — do more stuff, take on more tasks, be more manic, be more forceful, be harder on myself and add more things to my to-do list — and that cuts in on my sleep, it cuts in on my rest, it cuts in on my physical well-being.

And I have pain. Lots of it. Tearing, ripping, screaming, shooting, chafing, burning, crazy-making pain.

So, in a way, the pain is like my barometer for how I’m doing, stress-wise. It tells me if old stuff is coming up that’s making me do things and make choices that aren’t healthy. It tells me if I’m falling back on old patterns, letting my fears and anxieties and old hurts stop me from living my life. It tells me if I’m tired — and it tells me that I’ve let myself get over-fatigued and ill-nourished.

It’s an objective measurement of how I’m doing psychologically and physically. And it gives me a great “excuse” (in my mind, when a simple reason won’t suffice) to step back and cut out all the shit I’ve got on my plate… focus in, take care of basics, talk over my issues with my therapist, and make sure I get plenty of rest. It tells me, loud and clear and in no uncertain terms, that I’m totally f’ed up, and I need to stop doing what I’ve been doing, and just take a break. Take care of myself. Have a long, hot shower. Take care of myself. Now.

Unless I do, I’m going to stay in pain. That’s just the way it is. And it’s my choice.

In a way, pain is my friend — but only because it’s my mortal enemy.