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Over at my Tough Boy Initiative I read the following about research on sensitivities after TBI
This article presents research specifically seen with TBI. I wish they posted a date it was conducted, or a link to a legit article! Legit research or not, the following statement I very much believe – just from talking to people, who know people who have struggled in similar situations. I also believe it from my own experience regulating the amount of sun/light I see each week, exposure to retail stores with fluorescent lights, and from what websites I visit most when I’m out of it. All these, and more, contribute to how comfortable I am in the moment, day and throughout the week.
Dr. Tosta stated in her research:
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Dr. Tosta stated in her research:
It appeared that these individuals were so overwhelmed by the changes to their life that they had little awareness of the severity of the symptoms contributing to their inability to function.
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I’ve been thinking a lot about anosognosia, lately, and this is in keeping with my current theme.
While it may be true that the overwhelm of dealing with TBI prevents us from identifying the challenges, there’s another aspect that lots of people don’t mention: a condition called “anosognosia” — basically, Latin for “not knowing there’s a problem”.
It’s a very interesting phenomenon that’s common in stroke survivors and severe TBI survivors, but in my case — a series of mild TBI’s — I can definitely tell it’s caused problems. You literally do not know there’s a problem with your processing. Other people can tell, but you can’t. Some people don’t even realize their one side is paralyzed. You can read more about it at http://discovermagazine.com/1995/may/thebrainthatmisp502 which is an article I really enjoyed.
So, while overwhelm may be part of it, there’s a cognitive aspect, as well. Dr. George Prigatano has written a great deal about this phenomenon, and Google Books has a pretty complete version of a book he contributed to: “Awareness of Deficit After Brain Injury” By George P. Prigatano, Daniel L. Schacter — you can read most of it at http://books.google.com/books?id=xze89PCLaWMC&printsec=frontcover&dq=Awareness+of+Deficit+After+Brain+Injury&client=firefox-a&sig=ACfU3U0fGDNZyDxdkuBwr4jzLwJ8_MoyGQ
It’s some of my favorite reading, these days. I feel a lot less insane/deficient/incapable, when I realize that the problem is not with ME — it’s with my brain
This is pretty much what got the ball rolling with me, in tracking down my TBI issues and finding a road to recovery. I knew I’d had a very difficult childhood, and I knew I had lots of issues as an adult. But this was the first piece of the puzzle that actually prompted me to seek help from a doctor.
Taken from The TBI Survival Guide by Dr. Glen Johnson – which is a link in the side column.
HEADACHES
1. Do you have more headaches since the injury or accident?
Not sure if it’s been since the injury/accident. I often have headaches. I have them so often, I just block them out. I don’t really notice them — it just feels “normal” to me to have a headache. I had a lot of headaches as a child, and my mother called them “sinus headaches,” but I can specifically remember times when I did not feel stuffed up, and I did not feel like I had sinus issues, but I still had a headache. My mother did not differentiate between them. Currently, I have headaches on an almost daily basis. But I don’t generally notice them, unless I pay close attention and actually self-assess.
2. Do you have pain in the temples or forehead?
Yes In my temples at times, as well as my forehead.
3. Do you have pain in the back of the head (sometimes the pain will start at the back of the head and extend to the front of the head)?
Yes I have pain in the back of my head — occipital area, sometimes around the base of my skull. I also have sharp, shooting pains that run up the back/side of my head to the front — I call them “lightning strikes”. The pain ranges from 3/10 – 9/10.
4. Do you have episodes of very sharp pain (like being stabbed) in the head which lasts from several seconds to several minutes?
Yes Sharp, shooting pains that stab in my head and feel like an icepick is being driven through my skull — I call them “lightning strikes,” too. It usually lasts only a few seconds. But that’s long enough, thank you very much. The pain ranges from 5/10 – 9/10.
MEMORY
5. Does your memory seem worse following the accident or injury?
I think so I have big pieces of memory missing from my childhood. There is a lot of my childhood that I don’t remember that my parents and siblings talk about, but I have recollection of. Also, since 2004, I’ve had trouble remembering who people are and where I am. I experience this at work, as well as when traveling. But it comes back to me over time – usually within a few minutes, if I think about it. Longer, if I have to “do research” to figure out who someone is.
6. Do you seem to forget what people have told you 15 to 30 minutes ago?
Yes I sometimes need to stop and remind myself what they said, and I have to ask them again. This can happen if I’m not paying attention, but it also happens when I AM paying attention — I focus on the statement or issue, but after a little while, I can’t remember what was just said to me.
7. Do family members or friends say that you have asked the same question over and over?
Yes, sometimes. To-do list items and passing questions need to be repeated sometimes. Or I cannot remember what I just asked them.
8. Do you have difficulty remembering what you have just read?
Yes I sometimes have to go back and read it again, sometimes 3 or 4 times, to retain it. Sometimes it’s because I get distracted, other times I really focus on the words, but I just don’t follow, so I step away and do something else and come back to the words when my mind is clearer. When I am fatigued, this is a big issue for me.
WORD-FINDING
9. Do you have difficulty coming up with the right word (you know the word that you want to say but can’t seem to “spit it out”)?
Yes Fairly frequently… can’t find the exact word to describe what I want to say, or I find a word, but don’t feel like I’ve been understood. That’s why I prefer writing — so I can edit myself and say exactly what I want to say. When I talk, there’s guarantee that I’ll say what I intended to.
FATIGUE
10. Do you get tired more easily (mentally and/or physically)?
Yes I’m often tired and I get tired more quickly than a lot of people around me. Even when I was a kid, I was usually in bed by 9:00 p.m., even during the summer, when other kids wanted to keep playing till midnight.
11. Does the fatigue get worse the more you think or in very emotional situations?
Yes Emotional or mentally taxing situations exhaust me
CHANGES IN EMOTION
12. Are you more easily irritated or angered (seems to come on quickly?
Yes Very intensely — snaps of temper over little things. It’s directly related to the amount of stress I feel I’m under. I snap more when I’m tired/stressed or I judge myself for being irritated/angered. I get agitated fairly easily, when I’m fatigued. My temper “snaps” can come and go very quickly, and I’ve learned to manage them effectively, but they still come up a lot.
13. Since the injury, do you cry or become depressed more easily?
Yes Hard to say, since I’ve always been inclined to get depressed, moreso than other kids. My mom was always giving me a hard time for not being more cheerful and not smiling enough. She would complain that I was angry and bitter, and she would get very frustrated at how out of sorts I could be. But I learned to keep my depression to myself.
CHANGES IN SLEEP
14. Do you keep waking up throughout the night and early morning?
Yes Especially during times of stress. Moreso, since the 2004 fall, than when I was a kid.
15. Do you wake up early in the morning (4 or 5 a.m.) and can’t get back to sleep?
Yes Since the 2004 fall, more than when I was a kid. I often wake up at 3:00 or 4:00 a.m. and cannot get back to sleep. I adjust and adapt with progressive relaxation and guided meditation, or I just get up and get things done in the time when I’m awake, and then I nap on weekends and evenings.
ENVIRONMENTAL OVERLOAD
16. Do you find yourself easily overwhelmed in noisy or crowded places (feeling overwhelmed in a busy store or around noisy children)?
Yes Absolutely Always. Crowds overwhelm me, and noisy kids fray my nerves.
IMPULSIVENESS
17. Do you find yourself making poor or impulsive decisions (saying things “without thinking” that may hurt others feelings; increase in impulse buying?)
Yes Saying things that are hurtful to others or inappropriate, against my will and better judgment — I know not to say them, but I can’t stop myself… like watching myself on a movie screen, unable to stop the train wreck. I am also prone to impulse buying, at times.
CONCENTRATION
18. Do you have difficulty concentrating (can’t seem to stay focused on what you are doing)?
Yes Especially during times of stress. I have a harder time on longer-term projects, than I did before. My mind tends to jump around a great deal, following associations, and if I’m not rested and paying close attention, I can easily drift off topic.
DISTRACTION
19. Are you easily distracted (someone interrupts you while you are doing a task and you lose your place)?
Yes Very frequently — and then I get very angry when it happens. Temper flares.
ORGANIZATION
20. Do you have difficulty getting organized or completing a task (leave out a step in a recipe or start multiple projects but don’t complete them)?
Yes Yes, my work slips and I overlook critical pieces of information, which undermines the success of my team, as well as my credibility. I have done this for years — worked very hard to finish something, then came to find out that I left out a critical piece of information that completely wrecked the whole spreadsheet/document, etc. It’s not a concentration thing or losing my focus — I am focused 100% on the work, but I miss something really critical and don’t catch it till afterwards, when it’s too late to fix it. This has caused a great deal of trouble for me at work, as I am often in mission-critical positions on multi-million dollar projects, and the demands and expectations are very high. I cannot mess up, and I do everything my power not to, but I sometimes “slip” without warning. I have absolutely no idea that I’m missing something, till too late.
Total Yes Answers = 20
If you have 5 or more Yes answers, discuss the results of this questionnaire with your doctor.
Okay, here’s my next question:
If neurologists are trained in a “scientific” sort of method and they specialize in studying the brain, why is it that there seem to be so few neurologists out there who truly “get” TBI?
This is quite distressing… and by “this”, I mean all the stories I’ve heard and read about how people who have sustained TBI’s are either dismissed or misdiagnosed or just plain mistreated. My own story is among them.
Before I start, I just want to say, this is not intended to be a rant about the terrible experiences I’ve had with neurologists. I have had some pretty distressing ones, but I really think it’s more productive to seek solutions and embrace the lessons, rather than gunning for revenge. We’ve all been hurt by someone or something, along the way, and if we’ve got TBI-related issues, the situation tends to be muddied — both by the ignorance of the general populace (and a lot of “experts”) and by our own altered cognitive processes. I realize, as a result of my TBI’s, that my mind can play tricks on me. So sometimes things aren’t as bad — or as good — as I think they are, so please take what I’m about to say with a grain of salt.
My own neurological saga began nearly a year ago, when I started to put two and two together and realized that there was something fundamentally wrong with my cognitive process. Something that had gone unrecognized and undetected for almost my entire life, but had been a persistent problem and issue for many, many years.
In the process of talking with my therapist, I took a very close look at the events of my childhood and how they had affected me. I’ve had a lot of behavioral and cognitive and emotional problems over the course of my life — I’ve been able to mask the cognitive and emotional ones really well, mostly by just keeping quiet and being very vigilant about people’s reactions to me, but the behavioral ones were a real problem when I was a kid — it’s what people could see: the temper tantrums, the meltdowns, the bad moods, the lashing out, the yelling, the acting out… Yikes.
Anyway, I was trying to figure out why my siblings had similar experiences to mine — some of them had worse ones, in fact — but I had the most trouble with things. One day, I just mentioned to my therapist, off-hand and very matter-of-factly, that I’d been hit in the head with a rock when I was 7 or 8 years old. She didn’t follow up with that, but that started me thinking. And it occurred to me that that injury, which I recall knocked me out briefly, might have affected me more than I realized.
I went about collecting and recording as much information as I could about my observations of my life — using valuable guidelines over at www.headinjury.com as a starting point. (Thanks! to them for their great info! What a great resource they are!) I wrote down as much information as I could about my childhood experiences that seemed to be directly related to my injury at age 8… and then I collected as much info as I could about how it appeared my adult life had been impacted by that injury. I started to see a lot of patterns that bore a really close resemblance to things I read about other people experiencing. (I’ll post some of what I collected, so you can see what I came across.)
Then I systematically kept track of my daily experiences, and I recorded what went on with me on a regular basis, tracking it to the symptoms of TBI. And I read a lot online about how people can be affected by brain injuries.
Now, all this was happening behind the scenes of my regular life — sort of on the QT. I did reach out to local brain injury associations, as well as some support groups. I was still really searching for some understanding of what had happened to me, and how it affected me. All of a sudden, I had a plausible explanation for all the difficulties I’d had as a kid, why I was so erratic, why things that were easy for other kids were hard for me… and why I’d made the kinds of decisions and taken the sorts of actions I had as a teenager and an adult. So many things could be explained by this! It was both euphoric and disconcerting. A lot of information came into my life in a relatively short period of time. And I was pretty much doing it on my own.
Knowing that I have a long history of being mistaken or downright wrong about things that seemed pretty “obvious” to me, and knowing that going it alone was perhaps not the best way to do things, I decided to seek out help. I was given some great information from other TBI survivors about finding a neuropsychologist to do an assessment of my situation and help me formulate a plan to rehabilitate myself. The only problem was, someone warned me, my insurance company was notoriously difficult about covering neuropsych exams (NPE), unless they were medically warranted.
I knew I needed an NPE — really for the sake of getting some professional corroboration about my situation, so I wasn’t just running around saying “This is what happened to me!” and making a total fool of myself in the process (It’s happened too often before, sadly). But how to qualify to get one?
I asked around, and people said that a neurologist would be the one person to determine if you needed one — anything less might not be honored by the insurance company. The problem was, not all neurologists have a clue about TBI, and some of them are downright hostile, when it comes to brain injury. I’m not sure why this is, if they’re neurologists and it’s their job to know about the brain, but there we have it.
So, off I went in search of a neurologist who specialized in TBI. I searched high and low, pulled data from listings from support groups and organizations, then cross-referenced that list with the neuros my insurance company listed on their website. It was a painstaking process, but eventually I found a neuro who specialized in TBI who seemed like a decent sort of fellow.
I compiled all my notes and edited them down and collected them in a three-ring binder. I listed my symptoms, my history of head injuries (which had actually lengthened — the more I thought about things, the more injuries I realized I’d had), my issues, and information I thought would be helpful for him to make some sort of diagnosis. I genuinely thought he would be open to it, and that he would appreciate the information, without having to sit and ask me all the questions. Plus, I was afraid I’d get turned around and not be able to answer accurately, so I wanted to make sure I had the right information recorded. I take my health very seriously, and I take my integrity seriously, too. I didn’t want to be misstating or confabulating or confusing the issue.
Well, I don’t have the time here to describe exactly what happened, but the end result was me feeling incredibly dismissed and my difficulties downplayed. (I’ve got to write more on this — it’s a great story and an educational tale — but not for this post.) Bottom line was, the neuro wouldn’t pay any attention to the information I’d collected, he ruled out the benefits of an MRI, he tossed my book aside, and he reached the eventual conclusion that I had “emotional problems” and I needed to see a cognitive-behavioral therapist and possibly go on Ritalin or some other stimulant.
He basically told me that my situation was “more complex” than he liked to deal with, and there wasn’t much he could tell me, so I should go see a neuropsychologist.
Well, yuh, I already knew that. I had been hoping he could at least confirm or deny the extent and possible impact of my injuries. But apparently, it’s kind of hard to tell what’s up with someone when they’re talking about multiple injuries sustained over the course of more than 30 years.
In retrospect, I think that my emotional state at that time didn’t help. I was very stressed when I went in to see the doctor, and I wasn’t really clear about the answers I was giving. I also didn’t feel as though he was in the least bit sympathetic to me, and I had a lot of trouble verbalizing the answers to his questions — either I gave him too much information, or too little. It just wasn’t good. Plus, he only had 50 minutes to spend with me, so there wasn’t much either of us could accomplish in the meantime. He did give me a neurological exam, and I came out looking pretty normal, from what I can tell.
I left that visit feeling genuinely unnerved. At the very least, I had expected at least a little indication of interest in my situation, but the doctor seemed more interested in seeing people with “real” problems — as though a lifetime of catastrophic relationship failures, a patchwork job history, constant headaches and ringing in my ears, mood and behavioral issues, and a complete and utter failure to fully realize my potential is not much of a problem at all.
Maybe he was looking for something more dramatic. Like a tumor. Or cancer. Or a Phineas Gage-like iron spike through my skull. Or some sort of medical data, which I did not have, since I’ve never gone to the hospital or sought medical treatment for any of my injuries.
Anyway, I was pretty torn up about the experience, and I continue to be bothered by it. It doesn’t help that this TBI business is wreaking havoc with my perceptions, but there seemed to be an alarming lack of intellectual curiosity, or even logic, to the doctor’s demeanor.
So, I buckled down and went ahead with finding a neuropsychologist who could perform an NPE on me, per the doctor’s directive. Again, like Diogenes with proverbial lantern in hand, I searched high and low, seeking a qualified individual who had a clue about my type of situation. Again, I had to cull out the ones who were flagged as “trouble” by a brain injury support group info packet (like the ones who testified for insurance companies to discredit TBI survivors in court). And then I had to cross-reference them against the insurance company’s website. And then I had to research their background and their professional reputation, if I could find it.
I found someone, at last, but he couldn’t fit me in until September. This was back in April, or so.
So, I sat and waited. And lined up another job. And totally screwed up that job and had to go find another one, so I wouldn’t lose my house.
All the while, it was getting harder and harder for me to deal with being so brushed off by that first neuro. So, I thought I’d see another one — someone a friend of mine had been seeing, whom she liked pretty well. I made an appointment with him and went to see him, thinking that I might get farther with him, if I just focused on one issue, rather than the whole kit-n-kaboodle.
I made up another version of my notes for this doctor and took it with me to reference. I wasn’t going to make the same mistake I’d made with the last doctor and just run my mouth without anything positive coming out of it.
But this guy was even worse than the last one. I think he may have either talked to the other doctor or he saw some of my notes from my PCP, who got a letter from the first doctor, and he treated me like a “hostile witness”. He wouldn’t let me use any of my notes, and he just grilled me over and over about details I wasn’t clear about, or I had to take time to think about. He announced that an MRI would be pointless to do, and he said my headaches were just stress. I had no time to gather my thoughts or describe the full spectrum of my issues, and I left feeling totally bulldozed and dismissed… and a little mistreated. (Again, I’m sure my TBIs didn’t help my processing at all — I’ll post more details on my experiences later — it’s really a very informative story.)
In the end, I didn’t get anywhere with these doctors. Maybe I was looking for the wrong thing from them. Maybe I was expecting too much, hoping for sympathy or at least a little curiosity about me and my situation. But still, it seems to me that a neurologist (for heavens sake!) would exhibit at least a little interest in someone like me — someone who has sustained multiple mild traumatic brain injuries over the course of my life, and has still managed to put together a life that a lot of people would be happy to have — with a loving spouse, a great house in a great town in a great state, pretty decent facility at getting along in the world, a career that looks great from the outside, the ability to be employed, and to be fully engaged in my life (my limitations notwithstanding).
But in the end, I got nothing. Worse than nothing. I got dismissed. Shunted off. Sent away to someone else.
I’m a TBI survivor who needs help understanding exactly what is up with me, and why my brain doesn’t work the way it should. I sought the help of neurologists… who just couldn’t be bothered with me. They dismissed me without so much as a second thought, from what I could tell. It’s their job to help people with neurological issues… I’ve been under the impression that it’s their job to identify the issues and be of assistance. And yet, both of these guys exhibit precious little interest in my situation.
Where’s the logic in that?


