Diving into my brain

Check out what’s in there…

Time to break out the old MRI again. About five years ago, I had a series of weird experiences that other people assured me were seizures. I honestly didn’t know what to think — my eyes would start jumping rhythmically back and forth, I couldn’t keep them focused on any one thing at a time, and I had these extreme and overwhelming floods of emotion that really leveled me. I even went blind for a few minutes, one afternoon while I was spending time with family.

After talking to a bunch of folks, including epilepsy doctors, I had an MRI and an EEG, and nothing came back definitive, other than a pineal cyst — which is common in the general population. About 40% of autopsies uncover a pineal cyst, but it doesn’t seem to make a ton of difference in quality of life, other than headaches and other issues in extreme cases. My pineal cyst was fairly small, so the doctor just told me to keep an eye on it and get re-scanned every couple of years to make sure it’s not getting worse.

I haven’t been back since, as I’m not having any symptoms or issues that seem worth the trouble. Also, the contrast agent they pump into you to make things light up made me sick, and there have been lots of reports of bad side-effects, so no thanks.

Anyway, reading about dopamine and how it’s produced in the body and the parts of the brain that are involved, I’ve dug up the old MRI files to look at, and it’s as fascinating as ever. The thing is, my brain doesn’t look like the textbook images — I must have lay on my back a lot as a baby, because the back of my head is flattened and the cerebellum is pushed forward and up. I have found other images on Google that look like me – and we certainly don’t look like what’s in the Netter’s anatomy book I have.

Fascinating. Not that this means there is anything wrong – it’s just different.

So, anyway, I’m looking at the physical structure of the brain, trying to see where all the action takes place. There’s a ton of stuff going on in there – it’s hard to distinguish between the different pieces, based on my limited knowledge, but I guess the most important thing is that everything is intact — and I have the capacity to explore and question and discover for myself.

That, in itself, gives me a rush, which is exactly what I need.

I need a rush that is for something meaningful and useful. For years, I devoted hours and hours of my time to activities that just took the pressure off and distracted me from what was really going on — writing for hours and hours in journals which never served any useful purpose, other than providing a rhythmic, solitary activity that would soothe my jangled nerves… studying history and obscure facts in order to better understand life around me (had limited success with that)… and drifting from one project to the next, each time convinced that I was going to hit the big time and make a fortune, then dropping each undertaking in due course because I got bored or it didn’t pan out the way I expected. I was really quite aimless — in large part because I only wanted to take the pressure off my head and my heart… not actually do anything with my life.

I suppose it was good for something. The interests and the discipline I developed over the years have stood me in good stead, with researching my TBI issues and figuring out how to address them. So, it wasn’t all for naught. But I spend a whole lot of time doing a whole lot of nothing — mainly because I just needed to take the edge off my anxiety and depression and low energy levels.

Now I’m able to focus that attention and activity in a productive direction. And getting the hang of tweaking my dopamine levels and increasing my general feelings of well-being, is just the ticket. It’s fascinating to me, and that can’t hurt.

So, the day is waiting. The brain is an enormous domain that’s full of all manner of fascinating areas and abilities. Looking at the anatomy can be overwhelming, but when I think about the dynamics of it — just how it works, and how I can better use it — a lot of it makes more sense.

Time to dive back in and get fascinated again.

Onward.

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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.

I’ve decided not to fire my therapist… yet

Note: I unpublished this post from 2009, for some reason. But reading it again today, it still seems very important to mention. So, I’ve published it again.

I’ve been agonizing a bit over my therapist, lately. And it’s kept me up at night, which is not good. I had intended to come back from Thanksgiving and fire them, since I have not felt like they are totally supportive of my recovery, and in some ways, the innuendos that they toss my way.

They’ve said things like, “You may have to settle for making less money because of your issues,” when I was talking about my job challenges and how frustrated I am with the high tech industry and my future prospects. I was frustrated with my own difficulties, yes, but my frustration was also due to the changing industry and the flood of young guns who are showing up (not necessarily knowing what they’re doing) and snapping up jobs for lower rates, which is a problem for seasoned pros like myself.

I was telling them about trying to repair a relationship I have with someone who is 15 years older than me, and this therapist said “Well, they are getting older, so you can only expect so much of them.” As though this friend of mine were impaired, simply due to their age. And they weren’t going to get any better over time, which meant (in their mind), I had to just accept the flaws in the relationship and take what little I could get, not have high hopes, not have high expectations, not have high… anything.

Truly, that makes me crazy. I am 100% committed to my recovery, and restoring myself to the highest level of functioning that is humanly (even inhumanly) possible. I know the human species is built for amazing things. I’ve watched Cirque de Soleil, and once you see — really see — them, you realize that more is possible than you ever dreamed. I’ve hauled my ass out of some pretty tight spots in my life, some of which looked hopelessly dire.  I’ve had my ass spared from some pretty shocking fates, through total flukes, coincidence, apparent divine intervention, and the kindness of strangers. I’ve been homeless, and I’ve been in the top 10% of the world’s wealthy. I’ve  been bullied and feted. I’ve won blue ribbons, and I’ve defaulted and fouled out. I’ve experienced a fairly wide gamut of human experiences, and since I’m only in my 40s, I don’t expect to stop doing that anytime soon.

For this therapist to tell me what is and is not possible, what I should or should not expect from life, is not only out of line, but flat out wrong.

Yes, it drives me crazy. The problem is, it drives me crazy in retrospect. ‘Cause I’m having trouble keeping up. The conversations we have tend to take on a life of their own and really speed up, to where I’m flying by the seat of my pants, trying to at least appear like I know what I’m talking about. I have been quite nervous with this shrink from the start. I’m not sure exactly why. Maybe it’s that they have these multiple degrees, and they carry themself like God’s gift. Maybe it’s that they’re very well-connected and I’m intimidated by their influence and power. Whatever the reason, when I’m in session, I get nervous. And I think they do, too, because they know I work for a very big and powerful company that is an imposing monolith in the region where we live. Yes, I suspect they’re quite nervous with me, too, and we both set each other off, so the conversations we have tend to jump around and pick up speed, and things get said that I can’t react to in the moment, ’cause I’m back on the last thought, trying to sort out what they meant when they said “_____”

Keeping up has always been a challenge for me, but all those successive challenges have been building up to critical mass. They’ve said a lot of things to me, and I’ve just nodded and uh-huh‘ed my way through the conversation, and then later realized what they said and what I really thought about it. And then, time after time, I’ve gotten upset and tweaked, because I haven’t been able to stand up for myself and set the record straight.

It drives me crazy, not being able to speak up at the instant something is not quite right. And it’s something I need to deal with.

Which is why I’m not firing them… right away.

What I really need to do, is get some practice standing up for myself and working with conversations in a common-sense way. My processing speed is slower than one would expect. That’s been well-established with testing. I also have difficulties understanding what I’m hearing. That also showed up on my neuropsych evaluation. And I have a long history of holding back and not engaging in conversations with people, because I’m trying to figure out in my head what just happened… but my head is not cooperating.

What I really need to do, is develop my skill at having these kinds of conversations, and mastering them in the moment, when they are causing me problems. Not run away right away, but stick with it, and see if I can sort things out — be very, very honest about what I’m thinking, ask for clarification, stop the action periodically to see if I’m following correctly, and not let this therapist make me feel less-than, because I’ve sustained a bunch of concussions over the course of my life.

This is very important practice. Handling conversation is a skill I must learn – even at this “late” date. Because this sort of muck-up doesn’t just happen with them, and it doesn’t just mess me up in therapy. It has messed me up at home, in the past, but I’ve been doing a lot better with it, since my spouse and I have been approaching our discussions and exchanges with my post-concussive state in the backs of our minds. It sometimes messes me up at work, too — the saving grace with work is that I interact with people on a daily basis, and I can check in with people again after the fact, and get clarification. And use email to get it in writing. And check with others to make sure I’ve got things straight in my head.

But not every exchange I have with people manageable with email and foll0w-ups and a deep understanding of my neurological issues. I have the whole outside world I have to deal with, and I need to deal with it well and effectively.

So, I will not be firing my therapist right away. I need to learn to deal with them more directly, to have conversations with them that are not one-sided, but are full conversations — (putting the “con-” which means “with” in “conversation”). I need to get with the conversations we’re having and participate. Even if it means slowing things down and feeling dense in the process. If I can get away from feeling stupid about not following at lightning speed… if I can figure out a different way of thinking about my processing speed being slowed down… if I can find another way of framing my interactive needs… that would be helpful.

Because the way I’m framing it now:

“You’re stupid to be this slow, so you’d better keep up, even if it’s at the cost of not following exactly. And by all means, never let them see that you’re struggling. You have your pride, after all.”

Well, that’s just not working.

Truly, I really don’t have the time to waste on relationships that undermine me. But this pattern with this therapist is part of a larger pattern I need to address. I need to practice having conversations with people that involve me, as well as them. And I need to slow down the pace, so I can have a fully involved exchange, not some mad dash to the finish line. What I really crave is quality of life. To be involved in my own life. To not just put on a good appearance, but also have a full experience — good, bad, or otherwise.

It’s all very well and good, if I look like I’m fine. But if I’m not fully present in the moment, when I’m looking the part, then the life I’m leading is not fully mine. It’s everybody else’s but mine.

Help for a teen-age girl who had a brain injury

I recently received this comment from someone looking to help the daughter of someone they work with.

I was wondering if you could give me some advise a woman I work with has a 13 year old daughter who was shot in the head at the age of 7. She has more or less fully “recovered” physically and mentally as according to her physicians.

Recently she has been getting in trouble at school when she gets stressed out about tests and friends and one of her problems at school is that when she gets stressed she involuntarily scratching her forearms which is alarming school officials . But when the officials approach her she becomes more stressed and scratches her self more.

So I gather you see the problem — the school has ordered my friend (who I will call Stacy) to take her daughter to a psychiatrist and to her PCP. The PCP says that there is nothing physically wrong with her so he can’t do any thing. The psychiatrist wants to medicate but is unsure what the side affects will be as seeing that she has had severe brain trauma and suggested Stacy to contact her neurologist; which she is doing but it takes awhile to get an appointment.

While they are waiting for the neurologist appointment I suggested getting her daughter involved in a support group with others who are going thru the same kind of emotional and psychological healing that she is going thru so she doesn’t feel alone and this is where I’m drawing a blank can you or can any one else get me in contact with a support group that may meet this girls needs if you can

Bless you

Thanks

I’m worried for Stacy also, I think she needs some one to talk to who is going thru what she is.

And here is my (slightly modified) response:

Hi Mel –

Thanks so much for writing and thanks for helping Stacy!

It sounds like Stacy’s daughter is using (negative) sensation as a way to calm herself down. This is not uncommon — some folks with seizure disorders will do it to stop/interrupt their meltdowns — they hit their heads or they hurt themselves in some way. Other folks who are overwhelmed will use pain to focus their thinking. They will scratch or hit themselves, bang their heads, or do something else to “get themselves back into the present”.

It could also be that she’s using it as a way to get people to back off of her — I have been known to do some kind of bizarre things — unconsciously and consciously — that caused people to back off of me. Things like twitching and behaving strangely, that made people look at me strangely, but got them to stop coming at me so hard. I didn’t WANT to act like a freak, but I found that my involuntary reflexes had the (negative) benefit of putting some distance between myself and the person who was yelling at me, so it actually helped in a way. Additional Note: I’m not saying Stacy’s daughter is intentionally doing bizarre things — I’m just saying I can relate, and the negative reactions I myself have displayed, have contributed to my own behavior and social issues, over the years.

Also, with me, my tbi’s have slowed down my reaction time, so when I have gotten into trouble with authorities in the past, and I haven’t reacted as quickly as they wanted, they acted like I was intentionally defying them, and they came at me all the harder. I wasn’t deliberately being bad, I was just “slower on the uptake” and they mis-interpreted my response as defiance. That may be happening with Stacy’s daughter, and if she’s like me, the increased attention feeds my confusion and I get even more overloaded — A Real Problem, which Stacy’s daughter may be having.

It also could be that — like me, when I was a kid — Stacy’s daughter is (mis)interpreting the school officials’ attention and concern as being in trouble and she thinks she’s being punished or disciplined, which — if she’s like me — just adds to the overwhelm. When they approach her, the school officials need to say explicitly that she is NOT in trouble. They are trying to help her. They may think she knows, but with tbi, it’s never safe to assume anything. Now, if the school officials ARE treating her like she’s in trouble, that’s another issue — a problem with the officials, themselves.

For dealing with sensory overload… Other people with sensory integration issues will do things like rub a coarse surface, tap a rhythm, hum, or do some other action which brings a single point of focus to their attention. It’s called “stimming” or “self-stimulation” and there are many different kinds that people do in different ways. If you Google “stimming” you may find something useful.

Additional Note: Stimming is often used by folks who are autistic or have some other developmental delay — I AM NOT saying Stacy’s daughter has become autistic as a result of her head injury, only that understanding stimming behaviors (as they are used by folks on the autistic spectrum), may help Stacy understand her daughter’s need to scratch her forearms.

I have been known to hurt myself (slightly) to “get out of” a downward slide into a meltdown or when I feel like I just can’t handle all the outside stimuli coming in. Before I knew about how even a mild TBI can affect the brain, I used to bang my head when I was too overwhelmed to function. (Note: since I learned more about tbi, I’ve stopped that behavior — I’ve got all the head injury I can handle, thank you very much.) I have also hit myself, grabbed my forearms really hard and squeezed long and hard enough to bruise myself, I have punched myself, and I have done other things to get a little pain into my system to clear my head. I have never severely injured myself — like cut myself or banged my hand in a drawer or something extreme like that. I just needed a little bit of pain to chill myself out and stop the chaos in my head. I have used sports in the past to create “managed pain” in a positive way — I would push myself really, really hard in practices and competitions, to the point where I was in real physical distress. But then I was able to chill, and life went on.

I’m not an expert in this, but I believe it’s because the pain triggers endorphines (and other stress hormones/adrenaline) which can help clear the mind and help someone get a single point of focus back, when they’re being bombarded with stimuli that they cannot sort out. (Interestingly, this ties in with the research I’m presently doing about how people (unconsciously) create stress and really difficult situations to help themselves function better, when they’re totally overwhelmed.) From personal experience, I can say that there’s nothing like a little pain, sometimes, to help me focus. NOTE: I am NOT advocating self-injury as a coping mechanism, I’m just observing that — on a very limited scale — self-administered pain/stress has helped me cope throughout my life. And in fact, I still use it, now and then.

Anyway, to avoid real injury and help myself focus, I use other techniques that are less stigmatized — more like stimming than self-injury. I usually have a rolled-up paper napkin or towel in one of my pockets that I carry around with me to rub and clench in my fist, when I’m feeling overwhelmed. A rolled-up napkin really works, because it’s coarse, and it fits in my hand, so I can carry it around without people noticing it. I find it very soothing. Also, I do things like rub the seam of my jeans, tap out rhythms (working on a computer keyboard is very soothing for me), and press my thumbnail into the sides of my fingers or palm. I do these things secretly, so no one will see, because if/when they do notice, they become worried and agitated, and it makes the situation worse for me.

For Stacy’s daughter, I would strongly recommend regular exercise, like getting involved in sports. I had real sensory issues and I was a total wreck, when I was a kid. Bit when I got to high school, I started getting involved in organized sports, and that made all the difference. But I couldn’t do every sport — team sports like basketball and softball and field hockey were too chaotic for me, so I ran cross country and track. I did individual sports as part of a team. If I hadn’t been so afraid of water, I would have gone out for the swim team, but I had a lot of trouble coordinating my breathing with motion when I swam, and I was (rightfully so) afraid of drowning.

If Stacy’s daughter is not athletic, I would really encourage her to do some sort of rigorous physical activity that she can do alone or with a small group. But find something physical to do, that lets her really work out her anxiety and channel all that energy. With each successive head injury I’ve had (8+), I’ve often noticed a sudden surge in my physical energy — and I felt more blocked, like I didn’t know what to do with it. That’s been a real problem over the years. But if I can find something really physically demanding to do, I’m usually able to get myself back on track.

If Stacy’s daughter can find something to do that is safe, as well as physically challenging, and not terribly expensive (running cross country and track are about the cheapest sports you can participate in), I really think it could help. And being in organized sports in school was great for me, because it gave me structure and guidance from coaches, as well as well-defined rules to play by — very important for me, after those injuries and concussions.

Now, if she cannot under any circumstances participate in sports, she may benefit from developing other (hidden) stimming techniques — like carrying a “worry stone” with her — a rough stone or some other texture that will keep her attention focused on something other than her confrontation and/or overwhelm. Or like me, carrying a rolled-up napkin to squeeze and rub, when things get a little ‘tight’. If she can be shown other ways she can dissipate the stress that don’t attract a lot of attention, that could help.

Above all, I would recommend that someone work with her in a non-judgmental way so she can develop other coping techniques. Like an occupational therapist. Since she was obviously head-injured by a gunshot wound, she must have medical records which show she is a tbi survivor, so she may be able to get help that insurance will pay for. Rather than sending her to a shrink or medicating her or treating her like she’s mentally ill, if someone can just explain to her that her brain is not processing information the same way that other people’s do, and it’s getting turned around (no fault of hers — it’s a result of the injury), and then work with her to constructively and positively deal with her unique situation, I think that could really help. Again, I’m not a trained professional in this, but as a multiple tbi survivor with sensory issues, I know it would have really helped me, when I was a kid.

As for Stacy, I would recommend that she spend some time reading about tbi online — check some of the links on my blog and learn about it. Even though her daughter has appeared to recover physically and mentally, she will likely have a bunch of issues that she needs to work through — many of which may look like “bad behavior” but are really neurological. Also, the young lady’s age tells me that because she’s going though puberty, her hormones are changing, and that can alter your neurological experience. Women with seizure disorders are known to experience changes in seizure activity which are directly related to their hormonal condition. Stacy may wish to keep a log about her daughter’s monthly cycles so she can track any kinds of behavior changes around the time of her ovulation/menstruation. That way, she can discuss it with a neurologist, and/or help her daughter prepare for times that may be tougher, due to hormonal fluctuations, and use that information to really be pro-active and common-sense about these seeming inexplicable behaviors.

I would recommend, also, that you give Stacy a copy of the self-assessment form(s) I have available on my blog, so she can see what kinds of symptoms can come with TBI. It could be that her daughter is having more problems than anyone realizes – but because of cultural bias, people think that her daughter is just being badly behaved. Or that Stacy is being a “bad mom”. I can’t tell you how many people were really hard on my parents — especially my mom — because they thought their bad parenting was responsible for my behavior. It wasn’t my parents — it was my tbi’s that caused me do do the things I did!

The more Stacy knows about tbi, the better. And her daughter’s school officials should be educated on it, as well. If nothing else, Stacy should make sure they know about her daughter’s brain injury, so they can respond appropriately and work constructively to develop positive approaches that don’t stress out the young lady. Stacy should NOT be afraid to tell them her daughter was brain injured. If she educates herself, she can advocate more effectively for her daughter.

Oh, AND — THIS IS REALLY IMPORTANT!!! if Stacy goes to a neurologist, she should make sure they know about traumatic brain injury. Not all neurologists do. I went to one who specialized in carpal tunnel and multiple sclerosis — not really helpful with tbi, I can tell you! Her local Brain Injury Association should be able to point her in the direction of a neuro with tbi experience.

Stacy may also find support through her local Brain Injury Association. Please tell her not to be afraid of the “brain injury” stigma — there are plenty of people who have had one. The association will probably have support groups she can attend, for survivors’ family members. Her daughter may be able to find support, also. On the surface, it may look like her daughter is all better, but the brain is mysterious thing. And especially since she’s going into full-blown puberty, she may find her “neurological landscape” changing, because her body and her hormones are changing, too. So, she’s going to need new and different help for her tbi, which will affect her in new ways as she matures.

Anyway, I hope that Stacy’s daughter can find other ways to relieve her stress, other than publicly injuring herself. I hope that Stacy can learn more about her daughter’s condition in a constructive and positive way. I hope that her daughter’s school can find ways to deal effectively with this young lady. And I hope you find more ways to help Stacy. It’s wonderful that you’re reaching out like this, and Stacy is lucky to have you as a friend!

Peace
BB