Ongoing Physical Symptoms
Many of the Veterans we spoke with talked about physical symptoms that they continue to struggle with - sometimes long after the occurrence of their injury – including headaches and light sensitivity; changes to hearing, vision and smell; and difficulties with balance and equilibrium. In this summary we describe how Veterans talked about their ongoing symptoms.
Headaches and light sensitivity
Some of the most debilitating symptoms that people described were continued headaches and sensitivity to light. Many of the Veterans we talked to described strategies for preventing headaches - including wearing dark sunglasses - and learning how to avoid triggers – such as stress, lack of sleep, and direct sunlight. As one Veteran explained, “light, it’s the enemy. You know, heat and light are not good things for us, because it will trigger the headaches.” Although some are able to manage the pain with medications or other strategies like “finding somewhere quiet” to be for a while, others explained that once a headache starts, it just has to run its course and there is a little they can do except wait it out. “Once they start, I have to pretty much go into a dark room for a whole day and just sleep it off.” Max says that his light sensitivity and migraines are especially bad in the winter “when there is so much snow, it hurts to see.” Another Veteran described always feeling tense physically and not knowing how intense it will be from one day to the next – “some days you wake up and you just hurt.”
Miguel continues to deal with symptoms including dizziness, disorientation and sensitivity to light.
Miguel continues to deal with symptoms including dizziness, disorientation and sensitivity to light.
It takes me a while to get out of bed in the morning because I’m already disoriented. When I’m able to do that I feel my ankles cringing up because I have to move them a little bit when I wake up in the morning. It takes a while for the dizziness to go away. I can’t drive. Sometimes I might be late to work because I have to leave a little bit later. Depending on what I’m doing it might hit me. Sometimes I think it might be a mind-boggling thing that I feel in the elevator, you know, depending on how it’s moving. Like right now with the shades, and that’s why I kind of dropped the shades because bright light really agitates me. That’s why I wear sunglasses a lot. Typically - when I get really tired or fatigued I feel it the most - and kind of feel like my mind plays tricks on me and sometimes I feel like I’m seeing something there when I sure as hell know there’s nothing there.
Luke is sensitive to light and gets headaches every day, sometimes so severe that he needs to take time off from work.
Luke is sensitive to light and gets headaches every day, sometimes so severe that he needs to take time off from work.
And then, you know, I get, I get headaches every day so I’m really sensitive to light. I’m always wearing my sunglasses. And I know I’m going to get one almost every day so it’s a matter of how soon in the day am I going to get it or how bad is it going to be that day. It gets to the point where I’ve had to take time off work and stuff. Because when I worked, I work as a deputy sheriff, so when I worked the road I would primarily work like evening, late evening hours and so you would do the transition of dark environments, bright laptop that I’m trying to focus on, information that’s coming and going. And then my emergency lights are going on and I’m using bright lights and then I’m transitioning back to trying to focus on this dark shadow and, you know, in the car or at the scene or whatever and so that transition back and forth was really difficult for me. Some days I’d just, I’d say, “I feel it coming, I’m going to get,” I knew I would get to the point where I would, the only relief would be to close my eyes, so I’d pull in and go home, so. That’s been difficult too because I never had, I wasn’t, you know, the guy who had headaches.
Changes to hearing, vision, and smell
Others talked about noticeable changes to their hearing, vision and smell. John has diplopia, or double vision, which means he sees two of everything. As the result of his injury Richard lost his “sense of smell, I have no sense of smell. And, I miss it at times. I do. I used to have smell memories but I don’t have them [anymore].” Several of the Veterans we interviewed have experienced hearing loss. Although hearing aids have helped restore hearing for some, others said they often forget to put them in, or that they are difficult to use in rainy weather. One Veteran explained that the hardest thing for him is filtering out different voices and sounds and that hearing aids make everything - even the little things he doesn’t need to hear – louder, which can be irritating. For Margaret, “hearing loss has been a big problem. Because like especially, I’m fine, just one on one here. But if there’s a crowd of people in here and everyone’s talking to each other, and then you’re talking to me, I won’t hear you. Hearing aids don’t help that.”
William noticed changes to his vision and being more easily fatigued.
William noticed changes to his vision and being more easily fatigued.
And then I came back, but I noticed some things were different. My vision was really bad. I mean it was awful. It was kind of wobbly and I’d see spots or things in my vision. And then I tried to work. I’d go on a mission and you know I was a marathon runner before, and now I’m just like smoked. I’d go on a mission and I’m talking to people and I’m engaging. And after one small, you know mission, I’m smoked like a cheap cigar and I just don’t understand that. So, I noticed that I was fatigued a lot easier than I was before.
Andrew no longer has color vision in one of his eyes.
Andrew no longer has color vision in one of his eyes.
I don’t know where different things are in the brain, but one of the results from it is, I’m now color blind in my left eye, because I had perfect color vision in both eyes, and now I only have color vision in one eye. So that’s why every color looks off to me. I can’t pick out what colors I’m going to wear or what to paint something. I have to assume that it’s right because that center - whatever center handles this eye was really banged up. And I didn’t know that until the VA this lady was taking these colors down and said, “What color is that?” And I went, “Well, that’s pink.” And she goes, “What color is this?” I said, “Well that’s red.” “Well, they’re actually the same one. It’s just you’re seeing this with both of your eyes, and you’re seeing this with just your right eye.”
Alex had trouble hearing and uses hearing aids (when he remembers to put them in).
Alex had trouble hearing and uses hearing aids (when he remembers to put them in).
And there’s an interrupt between how I process sound now, too. I have hearing aids for it, but I lost one. I just got my, another set and I just keep forgetting to put them in. For one, they’re very inconvenient to have in Oregon weather because if it rains you can’t wear them. If you’re outside working, you know. So, it’s, it works in social gatherings and classroom settings, things like that. Because they gave me a device that I can actually put on the instructor and it’ll relay their speech right to my ear, so it’s a direct thing.
Steven’s hearing loss makes it harder to communicate with his wife and she gets mad when he doesn’t wear his hearing aids.
Steven’s hearing loss makes it harder to communicate with his wife and she gets mad when he doesn’t wear his hearing aids.
I’ve lost a significant amount of my hearing, you know? And that doesn’t help with, you know, being married because it’s like, you know, women – I don’t know if you would understand it, but I did some research that women speak in a higher frequency than men speak. And it’s the high frequencies that I can’t hear. And it sounds like she’s mumbling to me. It sounds like, it’s like, it sounds like, you know [covers mouth] [sound effects]. But it’s like, it’s a higher pitch that I can’t hear and everything. And so I have hearing aids. And she gets mad at me if I don’t wear them, you know? Obviously, I’m not wearing them today because I forgot to put them in. And it’s things like that, I forget, you know? And I forget things that I’m supposed to do, you know? I miss appointments and then I get things in the mail saying that you missed an appointment and stuff, you know. And I’m like, “God,” you know, “when can I get this straightened out?” you know?
Balance, equilibrium, and nausea
Many described ongoing struggles with balance, equilibrium, and nausea. One Veteran described being able to stop himself from falling forward, but that he can’t stop himself from falling backwards anymore. Another said that his balance is so bad that he frequently falls, especially when going up and down stairs - “I can’t go upstairs and I can’t go downstairs. I fall just as easily going up as I do down, and falling down hurts a lot more. You fall up it’s not too bad.” John told us that of all of the symptoms he has experienced, vertigo is the worst – “I can deal with everything except the vertigo. It feels like you’re spinning in place. I can lay down at night, and I can close my eyes and open my eyes, and everything will shift. And I’ll blink, and it starts over again. It’s real slow—it can do it real fast, when it does it real fast, you just hold on for dear life.” Jeremy was a rifleman in the Marine Corps, but since his injury has experienced problems with balance and equilibrium that makes it harder for him to judge distances or “hit a moving target.”
Margaret struggles with her balance and equilibrium and has fallen a couple of times.
Margaret struggles with her balance and equilibrium and has fallen a couple of times.
The reason why I walk with a walking stick is because my equilibrium - not because I have back or bone or knee problems - but because I, I don’t trust my equilibrium. I have fallen a couple of times due to my own lack of my surroundings. I was out in the garage one day and I wanted to put some boxes in the recycling bin. Well they were kind of big, so I had to make them smaller. So, I jumped on top of one, trying to smash it. Well of course, you know, I lost my balance on this thing that was wobbly, and over I went. I didn’t hurt myself, but it was a lesson. It was a lesson.
Jeremy still struggles with nausea and balance, especially when he moves his head quickly.
Jeremy still struggles with nausea and balance, especially when he moves his head quickly.
When I get, yeah, nausea. And it goes along with the balance and stuff because how I explain it, or how you would – how I would share it would be, just like when you get the spins if you drink too much. It just all of a sudden, “Whoa.” And especially when, you know, if you ever get spins from when you get nauseated you usually fall into stuff. And that’s what I ended up doing. Like, that’s – those are the major side effects. It’s the random like, BAM. And like, “Whoa.” Or I’ll misjudge the side of a door or something and I’ll totally just hit the edge. Or, you know, I’ll just misjudge stuff that’s a very – it’s just a slight, minute difference that I would’ve never done it before. I mean I’m an expert rifleman. I mean, I have, I have over 20/20 eyesight still. But when it comes to movement, I lose all – I mean my eyesight, my test score drops way down. I almost – way, way down to the point where I couldn’t even pass the test and it showed up on the scores. But I have over 20/20 if my head doesn’t move. So it’s – my equilibrium is more damaged than initially thought because just from my perspective, that’s a big difference. And I was like, if, I mean, because I wasn’t like that. Because I can hit moving targets, I was in the Marine Corps. And now I wouldn’t be able to.
Changes over time
Some of the Veterans we talked to felt like their condition was getting better and described seeing improvements as they learned new ways to cope with their symptoms. Sam told us that he has adapted to living with TBI and that “time doesn’t heal, but time does definitely give you the experience to know how to deal with it.” Roger said that he is in great health and he is now less focused on the impacts of his head injury and more focused on other health issues, like blood pressure and diabetes. However, others reported that their symptoms have not improved or that some have even gotten worse over time. Luke said the ringing in his ears and headaches have become more intense. Matt’s headaches are no longer as frequent, but his memory and sensitivity to bright lights has gotten worse.
Luke says that the ringing in his ears has gotten significantly worse and his headaches are worse and more frequent.
Luke says that the ringing in his ears has gotten significantly worse and his headaches are worse and more frequent.
Yeah. I get stuck a lot more often on stuff. The ringing has gotten significantly worse. I’m having difficulty hearing people in crowded, crowded rooms, you know, where there’s other stuff going on and focusing on stuff. I think I’ve been putting that off for a while and it’s time, I’m glad today I started organizing stuff to go back in because whether or not I have to wear a hearing aid, or I know now, I’ve talked to other Veterans who have, who say there’s some noise cancelling features where they can adjust things, so that it matches the pitch of what they’re hearing at the time which will cancel it out and stuff. And the headaches have gotten worse and more frequent, unfortunately. But nothing, you know, I think those are probably the biggest pieces.
Although his headaches are no longer as frequent, Matt says that his memory and sensitivity to bright lights have gotten worse.
Although his headaches are no longer as frequent, Matt says that his memory and sensitivity to bright lights have gotten worse.
Some of them have gotten better. Some have gotten worse. Sensitivity to bright light has gotten worse. Actually I go back in another week or so to get my eyes rechecked and get darker sunglasses. Headaches have stayed about the same, just not as frequent as they used to be. Now it’s just like maybe one migraine every week. And all the other times it’s just a bad headache.
I: And is there stuff that’s gotten, what about your memory? Can you talk about that a little bit. How that’s sort of changed, or -
It’s gotten worse over time. There was, I could, my biggest problem is I could go downstairs and start the laundry and know in half hour I need to take it and put it into the dryer. And I’ll get upstairs, I’ll start doing other stuff and I’ll totally forget that I even started the laundry, or I’m supposed to do this. If I don’t put it down in my calendar it could be - all of a sudden I just realize - “Oh, shoot, I was supposed to be somewhere at 2:00.” And I’ll call - “Oh, I forgot that I had the appointment. I need to reschedule.”
Roger’s primary care doctor told him that he is in good health and that if he dies now it will not be because of his brain injury.
Roger’s primary care doctor told him that he is in good health and that if he dies now it will not be because of his brain injury.
I’ll tell you one thing, that OK, remember, they told me I was going to die. I saw my primary provider, last week? And he was, he had been giving me all these tests every six months, every year. I’m sorry, every year. And I see him every six months. And, and he took a look through all these tests and he, and he said, “really, really good.” He said, “really good.” And he said, “On, on your, your diabetes – really in control. You’ve still got it, don’t worry about that.” But he said, “You’re doing really, really well. Your blood pressure is doing really, really well,” all these things. And then he said, “You know,” how do I put it? “It’s like if you die now,” here are these other doctors that told me I’m going to die with my head, so, my brain is so messed up. He said, “If you die now, it will not be because of your brain injury.” And he said, and he looked, he showed me some things on, on the computer. And he said, “Because of this score, and this score, and this score, and this score.” And it showed, it means that the, I have a - is only a fifteen percent likelihood that I will have a heart attack or stroke in the next fifteen years, or ten years. And then he said, “And you’ll probably live another fifteen to twenty years.”
(See also: Impact on Cognitive Function; Strategies for Managing Pain & Vertigo; Changing Sense of Self; Services & Programs for Veterans; Coping with Impacts on Memory & Cognitive Function)