Stories about Seizures 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.
So you went by ambulance to Sacred Heart. What did they do the first 24 hours at Sacred Heart?: “Stopped the bleeding, put some stitches in. They didn’t suspect that it would be as serious as it would be. I was in and out of consciousness for a good month. Seizures, you know little seizures. They never called them seizures until a year and a half later when I saw a specialist. Then the problem started about six months after that.”
You go back into the hospital after three weeks, give me a sense of what happens then.: “I call them the shakes, because I didn’t know what was going on and then every time I’d have these. It turns out they ended up being seizures. I got tired and my brain even got more drained. It had more struggles. At that point they started doing different medicines and that was kind of disastrous because, that’s kind of what (they) did is prescribe meds, psychotropic for people and my doctor wanted to help.”
Now, you went home and had to go back. Do you know why you had to go back?: “Because the shakes. I couldn’t stop shaking. Typically you think a seizure is somebody on the ground, but mine were just like, little shakes about ten minutes long and, and it took a few different medicines before one actually worked and one almost killed me. The inside of my throat broke out and the lining in my stomach.” When did you go into the psyche ward? That was when you had the suicidal issue?: “Right. I went in there to just see what’s going on and that was the last time. Yeah I would go in for the headaches. The headaches hurt so bad the first couple of years. And I would just go in with the pain and then the more pain I had, the shakes. They called them shakes and the seizures would get, increasingly bad.”
Give me a sense of the progression of the shaking. Were there actual seizures involved?: “In the beginning yeah, they were. I would shake and then I’d go into a cold sweat, and even my wife at that point she would say hey he’s having seizures. And the doctor would say, he’s not having seizures. Of course I didn’t want to have seizures because you lose your license. So I would agree with the doctor at that point. I’ve maintained them pretty good, but if I get myself too unhealthy and they come back, fairly regularly.” Do you remember these episodes after you have had them?: “Oh yeah, and they’re not like severe seizures, but they’re enough to where you’re shaking, I mean, typically this arm would shake and it’s kind of interesting that it was the arm that I have problems with. It would shake and my feet would shake a little bit. But the weirdest sensation is that the tips of my toes and the tips of my fingers would get numb, and I’d say that’s the weirdest thing. And I can tell when I’m going to have a seizure and it’s been a while, but my tips of my fingers will be the first things to get numb and I’ll feel just a little tingling.”
One long-term concern for Doug is seizure and headaches. He takes the Depakote for seizures. He explains:”Well just before I was going to leave Clearview, I had what they classified was a seizure. When I moved here to Wausau I just saw another specialist and they still got me on Depakote, but then they got me on another pill for seizures. I can’t remember the name of it, but she wants me to write down every time I have like a seizure or seizure symptom.”
Seizures. Seizure disorders are another common consequence of severe brain injury. Fred has been treated for seizures but doesn’t believe he has had any. Fred states; “I think they had me on the anti-seizure medication just as a, just to make sure. I might have. I’m not, I don’t remember if I did, but they had me on anti-seizure meds, and then I just went back to the doctor a month, few months ago, and they gave me tests and he, the doctor told me that my brain, the way it looks is, it looks like I’ve never had a seizure. He says we’re going to take, I’m getting taken off my medication slowly, to where anywhere from June to August, I’ll be done with taking meds for that, and he says that if anything happens, if I have a seizure in between now and then, then, you know, they’re gonna send me back on the meds.”
The driving issue got more complicated because she was diagnosed as having a seizure disorder. Her husband explains: “We went through a couple episodes where she had seizures so they wanted to pull her driver’s license. And then we found out that the type of seizures she is having doesn’t constitute her to lose her driving privileges.Actually she still has seizures quite a bit, but they’re not a grand mal seizure like we think of when, when we hear people having a seizure. She has what’s called a partial complex seizure. She can be talking to you and have a seizure and you don’t even know that she’s having it, unless she says oh, I just had a seizure.She describes it as like an electrical shock she can just feel going through her whole body. ” Gina explains: “I have epilepsy. I am on anti-seizure drugs. I have not had a seizure in, going on four and a half years now. Every time I have an (EEG) or anything, they, it shows seizure activity and I don’t know what that means.
Now you mentioned that when you were in the hospital, they had you on some pretty significant seizure medications. Have you had any problems with seizures?; ‘No. I don’t think I should be on medication anymore.” When was the last time you had a seizure?: “See that part I don’t remember.” Has the doctor explained why you’re on those medications?: “I think, yeah, but I can’t remember it all. One’s to prevent brain seizures and one’s for depression and anxieties, or stuff like that I guess.”
While not well understood, it also likely that the cerebral cortex has become abnormally sensitive to stress and heightened neural signaling. In such cases, it may be that a type of seizure disorder is contributing to the loss of control. Seizure disorders do not start and stop with grand mal and partial seizures. The same type of abnormal electrical signaling on the surface of the cerebral cortex, can also cause a whole host of abnormalities, including wild changes, called lability, in mood. More focus must be paid to this element of neurobehavioral abnormalities, particularly because medications that assist in controlling seizures may help in this area as well.
Seizures are typically thought of a dramatic events where the sufferer is lying on the floor, shaking, foaming at the mouth. While these kind of seizures do occur after brain injury, seizure activity covers a broad spectrum of abnormal brain function all the way to staring spells to other peculiar phenomenon such as smelling things that aren’t there. You also mentioned that you did have seizures.: “I had petit mal seizures.” When did that start?: “Pretty much right when, right after I regained consciousness.” Are you on seizure medication?: “I was on, yes, Tegretol for a long time.” Until just recently?: “Actually I went from Tegretol to Depakote. I got off my Depakote about eight months ago” Did you ever have a grand mal seizure? : “They said I had one when I was in my coma. My parents and friends and everybody called them staring fits. All of a sudden I just blank out, I wouldn’t hear a thing and I’d be staring off in oblivion. I would come out of it on my own or someone would either touch me or pat me on the shoulder and I would come out and then like, are you okay? Okay, what were you doing? I have no clue.”
That was primarily for your seizures?: “That was primarily for seizures and also Tegretol is a mood stabilizer.” Did they ever postulate or come to a conclusion that your seizure disorder was contributing to your temper outbursts and your behavior issues?: “They never said anything like that. Right now I’m on Lamictal which is like Tegretol, but the bad effects are very small. I’m not considered, seizure prone any more but they’re keeping me on the Lamictal for mood stabilizer and make sure I don’t have any more seizures.”
Did you have problems learning that?: “No. My problem was after about a year of working there and working on the computers, I started having really bad petit mal seizures.” Was the cursor flashing part of the problem?: “The cursor flashing. I would end up staring at it for a long time, minutes.”
Never had any diagnosis of seizure?: “Never diagnosed with seizures. She was on seizure medication to prevent them in case she’s awake, eyes open, but she doesn’t seem to be responsive?: “Only when the television’s on or something’s distracting her like the television.”
I asked his wife about seizures: He is on anti-seizure medicine?: “Yes.’Has he had anything that you would consider to be seizure-like, or a seizure caused?: “No. They weren’t sure, when he had what I thought was like a stroke, the neurologic problems, the night he was sent back to the hospital; they thought that might have been some kind of unusual seizure activity; but they, they pretty much ruled that out.”
Why did they put you on seizure medicine?: “I was told any brain injury is automatically on seizure watch and they put on you
on anti-seizure medication for 12 months regardless.” Even though both he and his wife denied any seizure diagnosis, it was clear that he was experiencing some non-traditional type pressure phenomenon different from most headaches, so I continued to probe for more information: Let’s talk about a range of symptoms that might point to some type of seizure disorder short of a grand mal seizure. You’re saying there’s times when your wife is sort of like trying to get through to you and you’re surfing. Are you in pain or are they times when you’re basically blank, you’re not really there?: “Yes to the second question.” So talk to me about what you know about those incidents.: “It, sometimes I’ll be in pressure but no pain. I’ll have head pressure and I’ll have waves of pressure in the head and it will slow down my thought process even more. She’ll ask me a simple question. You know: Would you like coffee or would you like water and I can’t process the two questions and so the, just, the, I guess the pressure is just, it kind of confuses me.”
Now, he’s on an anti-seizure medication?: “Yes.” And that’s primarily to treat the tremors or a prophylactic that he might actually have a seizure?: “Right, it’s probably, it’s probably a little bit of both, to prevent, um, and also works as a mood stabilizer, too.” When asking TJ, Did you have a seizure shortly after your injury?: “I had them in the hospital but I don’t remember them.”
Is it possible that there isn’t any logical explanation for those outbursts other than some type of seizure activity?: “It could be because sometimes I just don’t understand why he’s not understanding what I said. Why does that turn and trigger something? Because it’s like, what, how are you – and I’ll ask him that, you know, what did you hear me say that, why did you ask that way?” In the context of the anger outburst?: “And that’s why the latest thing that we’ve done is the sleep apnea machine. That is our latest progression of where we’re at and we’re hoping that with that, because the seizures are apparent. You can’t, if he didn’t lean forward like this and rest this arm on his leg you would’ve seen him tremor. They have been declining, those tremors.” One explanation for these outbursts from TJ would be subtle type of seizure. Pointing towards such an explanation is:The lack of a objective stimulus to set off these outburst,TJ’s amnesia for events during the outbursts, and the rapid acceleration and deceleration of his temper.