Stories about Anxiety after Brain Injury
The following are stories of real life survivors of brain injury. Clicking on the titles will take you to their actual story.
I have been unable to understand who was injecting such ugliness into my head, when I knew that I was capable ofanything, both before and after my accident. I can remember everything about my life before the accident, that I had lived well, and loved the person I was.
One of Angela’s biggest problems after the accident is what happens to her cognitive and emotional abilities when she gets stressed.
I had a lot of anxiety, about things I was going to look up when I got home or things that I was going to write down. So I had a lot of notebooks.
I didn’t really understand why I would cry because I wasn’t really depressed, I was more scared.
These thoughts have often left me with an empty feeling inside and a curiosity to know if in fact my life was and continues to be a universal research project and that if in my second journey through transformation I was going to be one of the horn worms who just dried up because I no longer have all the skills or the motivation that I need in order to cocoon myself and complete the life cycle.
Angela states that one of the reasons she starts talking too much is because she feels anxiety about the conversation and if she is talking she can control the conversation.
I have anxiety that I talked too long, or that I told them too much information, or they didn’t really want to hear what I had to say,
If I was in an office and I could pay attention to the loan and not hear all the noises, I could (perhaps function) but the problem is my body has a physiological stress response in that environment. Like if I’m in a restaurant even though I’m totally fine, my body is stressed. My heart races, I sweat, I become like afraid because I don’t, I don’t know what I’m saying and I know I don’t know what they’re saying. There’s all this information coming in and I don’t know which of the information’s important to me and which is not.
height=”390″ width=”480″ frameborder=”0″>She also has significant anxiety problems in keeping up in conversations. “Sometimes if I walk into a conversation and somebody would start talking to me immediately and I’d have no idea what they’re talking about I would feel not very smart asking well what was it that you were talking about? And if it’s a subject they’ve been discussing for 15 minutes and my brain walks away and I come back and then oh what was that you were talking about? Then they think that I’m not paying attention.”
Elizabeth explains her problem with dealing with her balance problems and how it causes her anxiety; “The biggest problem I have is the dizziness because I’ve, doing everything I can do, and the dizziness can be good. It can make it up to six months without a problem or anything and all of a sudden it snaps and it’s kind of like, I, and it’s not fear, and I know I’m not going to get what word it should be or â€“ I don’t think it’s anxiety but it’s doing something that you normally do every day and it hasn’t happened in how long and all of a sudden I, that’s when I snap and I lose it. I don’t understand it so I get frustrated. I yell. I cry. I’m scared but like you said it’s like an eighth grader. I can’t, I can’t connect.”
Elizabeth explains her frustrations with organization; “Most, most of the time I, I’m pretty good at it (organization). I can handle stuff and then the problem is if I don’t get it and I don’t understand something, I can, I can be talking great with
you right now and if someone would come running through the door and ask a question about anything I can look at them and it, I cannot understand it. Those are the things that can kind of make me snap. I get crabby kind of real fast at them. I get scared. I don’t understand it. I get frustrated at myself for not understanding it and those, that’s the damage.”
Two brain structures and the way in which they communicate with the frontal lobes are undoubtedly part of her picture, based upon the significant functional changes in her memory and the issues she has with stress and anxiety.
His mother explains his state of mind when he was transferred to Norwood hospital; “He had problems with being angry, impatient, confused. He still didn’t necessarily recognize us on a consistent basis. He would forget where he was. He’d forget if people came to visit.”
Fred’s Mom explains: “Well, when he came home he was doing very well, I mean for the most part. I would say he was – personality wise and everything he seemed a lot like the boy he was. He still had his issues. He still had to deal with confusion, anger, forget, you know, forgetfulness. And he would get frustrated because he would see where he was lacking at times. But at that point we always had a positive attitude coming into that, that it would always get better, and that’s what we always just kept relying on.”
The significance of that concussion became more of a concern when he revealed that he had anxiety problems before his severe accident. When asked about the anxiety from the severe TBI, he said this: “I’m not sure how my accident affected my anxiety, but I was diagnosed with anxiety, like they said it was a bad anxiety before my accident. That was when I was high school age. And I’ve had anxiety ever since then. But I don’t, I’m not sure how, how bad it is. I mean, it’s, it’s obviously bad enough because I get nervous and whatnot.”
Gina states that she had some very anxious and angry moments while in the hospital in Green Bay. I broke the zipper and went to the bathroom by myself and they came in, because when I went into the bathroom after I broke the zipper these alarms went off. I didn’t realize it was my room. I went to the bathroom and came out and they were yelling at me and I remember being just pissed and told them I told you I didn’t want to be in there. I so then I had to promise that I would call a nurse if I had to go to the bathroom.I do remember them, the nurse, the next day it was, I had got up to go to the bathroom and she wouldn’t close the door and I was upset with that. And I fought with them about that and said, “I’m not going to the bathroom in front of somebody.” So my vanity was kind of sticking out a little bit there, but I just remember them, I don’t know they kept pushing and pushing I was just incredibly tired all the time.”
Gina got very frustrated with the changes that had been made at work since she left; “To do the changes, I know from the time that I, when I had left to when I started coming back, five more companies had changed their web sites and how you do things and I was very, very frustrated with learning it.”
frameborder=”0″>Gina sees anger problems in herself. She explains; “I think anger comes through more than anything and I will get angry over nothing and it flashes like that and all you have to do â€“ I mean and I don’t know. I don’t know what sets my off. I don’t think it’s seizures. It could be but a lot of it is. I notice a lot of the anger is if I am extremely tired. By the end of the week, I will be more tired than anything and, and if I have plans, like say tonight I’m tired and if I don’t get to go home and just kind of decompress or go no, no computers, no TV, just complete silence, if I don’t get to do that, I, I don’t, I shouldn’t say I’m going to lose control but I’m not going to last at that party very long. My husband and I have learned a lot of times to take separate vehicles.” Gina also has anxiety problems, especially in crowds, another common complaint from TBI survivors. She explains: “Yes, I cannot handle crowds at all. Its more anxiety (than anger) with crowds. One thing that I feel like people, I’ve got this thing, people should move at my pace when I’m in a crowd and if they’re going slower, I get irritated and if I can’t get around them or if they’re going faster and I feel like they’re crowding in on my space, I get frustrated.
Detailing her inabilities, she said: “All the same things that I, I knew from the beginning. I can’t comprehend mathematical concepts, and I always had math anxiety, but unless I read something out loud and take notes, I cannot comprehend it. So I was, and part of it was just the nature of the job and the amount of training I had.”
In far too many cases, the biggest problem that interferes with a good recovery after a severe brain injury is the breakdown in relationship’s that comes from the survivor’s inability to control his or her temper. The problem is particularly intense with men. My first three or four clients with severe brain injury were not personal injury clients, but divorce or criminal clients. The reason they needed a lawyer was they had been arrested because of domestic disputes, clearly attributable to the inability to control temper when returned home from rehabilitation. Ian’s mood issues are not that extreme, but do appear to be one of his biggest ongoing problems. I asked Ian what things made him irritable: “Loud noises. It” to me I just” or I shouldn’t say loud noise; more like a high-pitched sound. For some reason it just irritates me.” I asked his Dad what was the biggest change in Ian since his accident: “Angry. Get’s red in the face. Upset real fast. If I’m there I can calm him down a little bit and say hey don’t worry about it let’s go outside. But if he’s there alone I don’t know.” Mom agreed: “He get’s angry. I don’t know if he said anything but Monday, Tuesday and Wednesday I usually go over to his house and some days he’ll up and he’ll be fine. Other days he’ll get up and he has an attitude. He gets very angry. Nothing has been said. Nobody is there except him and I. The kids are there but they’re not up yet. And for whatever reason he’s angry. And if I say something to him he starts getting very loud and he gets this attitude like it’s your fault.
Do you sometimes blurt things out that you shouldn’t say or say things that are inappropriate? “I’ve been hollered at about that, so I know it does happen.”
Dad: What do you think of the idea of anger management therapy? Is there such a thing and is it possible to do?Gordon Johnson: The obvious problem is that managing the anger of brain-injured person is different than managing typical problems. Although there’s always an overlap between normal bad behavior and abnormal neuro-behavior.Mom: It is. Yeah.Gordon Johnson: That may be because there is some neurological cause than some other than we consider to be normal bad behavior. But it is a very different process too. (Learning for a brain injury survivor) takes longer and takes more reinforcement. And some of the ways in which we motivate people to change their behavior just aren’t going to work with someone with a severe brain injury because of the motivation changes. Motivation does change and it is harder.So if you went to the classic anger management class where they send someone who beat up his wife it’s not going to do anything. A trained brain-injury counselor, working with the family, with the wife, with the kids may be able to make a difference but you just can’t send them to an anger management class. That’s probably going to make him angrier.
“For most of us, the first main manifestation of trying to type on a moving keyboard wouldn’t be fatigue but frustation. Jeremiah’s agrees: “Oh absolutely frustration, but, but the thing that has to overcome frustration is desire. You have to have the desire within you to succeed. And frustration, you don’t know, well I’m not going to say you don’t know, but people don’t know who don’t, haven’t experienced what other people know, how much it is for frustration for them to affect or how much difficulty it is for them to do different things.”
Talk to me about that.: “Well that’s kind of a multitasking thing. I’m good at multitasking but not being overwhelmed all at once. If we designate which entity that I’m going to be actually, which task I’m actually going to be doing, I can handle that if I know I’m going to be moving to another one. But, if I’m a very multifunctional sensory overload then I just basically will have a temper, temper, temper tantrum.”
What would happen in very heavy traffic?: “I’d get frustrated with people not making appropriate decisions as far as lane changing and things of that nature.”
What about crowds? You ever go to places like baseball games or things like that?: “I have been; don’t like it. because, because again it’s all the noise. Crowds don’t bother me really, unless it’s, Thanksgiving, Thanksgiving, Black Friday, oh God.”
As I understand what happened you started in Madison, you went to Mercy, At some point early when you were at Mercy you were having some problems with confusion and agitation and they had to watch you to make sure you didn’t wander off?: “Yeah. Especially on third shift, they’d make sure I didn’t wander, they watch to make sure I don’t roll out of bed again. That’s the reason why, and they had to put me on a different kind of medication and Depakote and Effexor and Neurontin. I guess I got aggressive and that made me, the medication helped me not be depressed, go into depression and prevented me from getting brain seizures and, and not be aggressive and all that.”
What happened at home that made your wife decide that you had to go to a locked ward?: “I think like I got like more aggressive like, my personality changed. Like simple things bothered me like someone not cleaning their mess up, they should have, he should cleaned it himself. I’ve taught that with the kids, you know. And, and then slapping her son on the back one time, and that, that, I always do that you know. And I apologized for it and that’s when she decided that I wasn’t right either, something was wrong so they, her and her brother-in-law had transferred me from the Mercy, I was at home now, and I thought I was going back to work, no I had to go back to Mercy before they took me to Waterford, to Lakeview.”
Do you get anxious or self conscious about your injury at times?: “Sometimes, but sometimes when I just, I don’t know, act like nothing happened or, because I don’t think, I’m still kind of in denial yet, like I could, all I think is nothing really happened and all that, you know what I’m saying? And I get medical records you know from UW Madison Hospital and Lakeview and Mercy and I mean, obviously there are other people who are worse than me with their brain injuries.”
style=”float:right; Let’s talk about mixing with people. Do you have problems with blurting things out that you shouldn’t, saying the wrong thing, doing the wrong thing?: “I think my problem is interrupting when people are talking. I get impatient I think. Or not impatient but anxious and I butt in, or an interruption. That’s what irritates me too, when people are talking and I kind of butt in you know. Not butt in but interrupt and then tell my, or what I’m going to say, that irritates me.”
Is it getting harder for you now, we’ve been doing this for an hour and 45 minutes?: “See I was going to say something and then I, then I, then I can’t remember what I was going to say, that’s what irritates me the most.”
Probably the scariest things for a family after severe TBI, are the wild mood swings and temper outbursts. While a teenager returning home to his parents is not nearly as dangerous a situation as when a man returns home to his wife, the nature and extent of these outburst are rarely appreciated before discharge. It is something that if you haven’t lived through, you will probably not understand. Lethan touches on those issues in the voice of his sister. Lethan first sets the stage: “And I witnessed the difficulties with the return, the inconsistency of moods. I remember getting into fights with him, being afraid that I was going to be hit, the hand would raise, pause, and I witnessed the struggle between rage and reason on his face.” Yet, in many ways these outburst are childlike. Part of the problem is that there is little inhibition left to modulate the emotional extremes. Still, it is clear that it is more than the inability to control temper. Something is really “pissing them off”.
If your lecture professor had to slowed it down to 100 words per minute would you have gotten most of what he said?: “Actually, if he would have slowed it down to about 75 to 65 words I would have kept up with him. If it wasn’t for my friend in the lecture class and the individual study class that we had, study class, I think that’s what it was called, if I didn’t have him in there I would have one big of a problem.” Once you fall behind, you’re trying to focus on the last part, you’re trying to remember and suddenly he’s a minute ahead of you in what he’s saying?: “That’s correct. My friend would actually do something really good. He would give me the notes after class and I’d copy them.”
Agitated behaviors range from more mild behaviors, normally inhibited motions, including nail-biting, foot-tapping, hand wringing, the inability to sit still, or pacing, to more severe behaviors. Nancy’s mom explains Nancy’ issues with this: “Well, we get her up. We try to keep it scheduled. Get her up, her brother’s up and gone to school and I get her up and get her dressed, get her something for breakfast and every day I put up a different activity out on the kitchen table. Because at this point in time she’s pacing. This is where the pacing starts. I don’t know why. In my feeble little mind I thought that once we got home everything would go back to normal, or things will click into place. That’s not the case. So, she starts pacing and I think in a day she probably put on ten miles of pacing in the house. I’d have to actually physically ask her and ask her to sit down. And it was very difficult for her to do that.”
Nancy’s mom explains her reaction to being in a room with her classmates: “When she walked in the room the noise level was so high for her that that was disturbing; put her on edge, so that was a stressor. And they all ran up to her and hugged her and the emotion in her face wasn’t “oh I’m so happy to be here”, “oh this is too cool”. It was absolute terror.”
After your heart started to beat, you were actually conscious again, confused and agitated. Is that right?: “Yeah, in and out of consciousness. They knew they were going to cut everything off of me and my skates are real expensive. So the people who were surrounding me said let’s try and save his ice skates. So, they tried to get them off of my feet and I came to and I guess I started flailing and, you know, â€œget off me, let go of meâ€ and then I passed out again, I guess and they got the skates off.”
What is Pristique for?: “It’s like a Prozac.” Anti-anxiety?: “I think it’s less than an anxiety. More of a, I forget. My wife will be able to explain the makeup of it but the Depakote is supposed to replace those two and I was on something else that I got off of when I started the Depakote and it’s been fine. But when I got off of the Pristique, something just really rocked my world.”
Is that something that’s easy for you do again or was that harder than you thought it would be as well? : “I didn’t think it was that hard, but then seeing some of the mistakes I made, you know, was, you know, it didn’t really bother me. But, I mean I did have issues with, it’s weird. What I used to be relaxed about, before the accident, now will sometimes drive me nuts, and vice-versa.” For example?: “Learning how to do stuff on the computer, and my wife sitting next to me trying to help me. I get extremely belligerent and, and violent and broke a telephone, you know, just, you know, excited about “
After being referred to a Neuropsychologist: “I had to come back down to Memphis and be there at 8:00 or 9:00 in the morning and then I went through this, like a battery of tests about three or four hours with the shapes and the blocks and everything. Then I got a break in the middle of the day at which time I was already kind of, my anxiety levels were way high and everything because of the fluorescent lights. There was just a lot of triggers that were setting me off during the testing and I got like a break to go get food. My anxiety level even got higher and by the time I came back I was probably a little more frazzled for lack of a better term than I was during the first half of it. The second half was like more the temperament where they ask, there was like 500 questions.”
In what ways do you, the fancy word would be “decompensate” but what ways do things go from bad to worse for you, when you put yourself in those situations?: “My anxiety levels raise up real high. I seem to get a little more agitated but that’s something I’ve really been working on for over the past two to three years. Kind of trying to not take things to heart so much and not I believe â€œcatastrophizeâ€ was the word my therapist used, because I always expect the worst because I had a lot of the worst that could happen, happen to me.”
What about temper problems?: “I was having it pretty bad like in the first year or so after the accident and that’s why I originally started seeing any kind of a professional about like moods and emotions. But it’s something that I’ve been aware of pretty much from the onset of the accident and I work at it every day to try and not let it just not to succumb to it I guess.” Did you have problems with the woman who lived with you for a year and a half with temper?: “That’s why I originally started going to a doctor about the stuff in the first place.” Did you have problems with violence?: “It wasn’t violence but I would get so mad that I would like break my own stuff.” What would set you off?: “I really think at the time it was just if something didn’t go right and it was just the constant piling up of things over and over and over that once it just got to a certain point it just, I had to let it out or it would go, I would go even crazier.”