Stories about Headaches 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.
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.”
“I was a avid reader and I couldn’t read as much because of headaches. The more strained I get, my eyesight starts going bad so I still have some visual things.”
One of the things that often gets lost in the shuffle when we talk, teach and counsel about brain injury, is pain. How big of an issue was pain for you after the wreck?: “It still is. The physical pain went away in six months, but the headaches and the humming and the visual stuff I still have. And it’s because I push myself, but I get headaches so bad that they’ll keep me up all night.” Tell me about the headaches in the first few months.: “This, I mean, I’ve never had a headache. I guess the best way to describe it your brain is in a vice from the inside out, I mean, its like your brain’s pushing against your skull, and I could feel exactly where my injury happened. I mean, and they say the brain doesn’t feel any pain and I keep hearing that from these doctors, and it would hurt so bad I was insane.: Now, much of headache pain is supposed to come from the scale. You had some significant scalp injury as well.: “Right.” When you say you could feel where you got hurt, are you feeling it in the scalp or in the brain?: “It was here, but the injury part was here. This was the part that was affecting my brain and this is the part when I felt it, it was numbing almost. I mean, I could feel it running down my skull, the pain would shoot through my spine. I mean, it would actually tingle my toes it would hurt so bad sometimes.
DJ tells of his Pain while in HealthSouth in Melbourne: “I was still having some very extreme hard headaches. I was taking a hydrocodone back then and, you know, some powerful drugs. But again, I didn’t know they had shot up my neck, but I would fall asleep after doing almost nothing.”
What other medicines you taking?: “Tramadol. It seems like there is one more. The Tramadol’s for headache and I got a lot of relief at a chiropractor’s office last summer for that. I could take two to six Tramadol every day. I have pain a little right here on my scapula. There”™s always pain.” Talk to me about your headaches.: “Headaches are generated, I believe, from the occipital area and I think that”™s where the brain bleed came from. They start here and they slide all the way up through (indicating the middle of the top of his head.) Sometimes they”™re on the shunt line. I can get pain right out my eye socket. My neurologist has pretty much confirmed this. He said, “œYeah, I mean, if you had layering along the posterior fossa and brain stem,” and he really believes that this is where all of the pressure and the pain came from. So, when the massage therapist did her work last summer and the chiropractor did their work, they concentrated basically from the scapula on up and then the pain management doctor shot me up and, well, the same as all the other doctors. He shot me up on a C5-6 to T1-2 area. ” Pain is one of the most overlooked issues after TBI, with headache being the single biggest part of that.
DJ states; “I asked Dr. Vinas’ office “why if my CT’s and MR scans are clear, is there still these awful headaches”? They were alarmed about hearing about so many MR scans.”
One long-term concern for Doug is seizure and headaches. It is hard to tell from Doug’s narrative whether he is having seizures or migraines. What is occurring may be in a gray area between seizures and migraines, the type of symptom post TBI that respond to anti-seizure medicines, regardless of the precise etiology. To him they are simply attacks. I think since I saw this last doctor two weeks ago, I’ve only had two attacks. When I first started having these seizures, I mean I would get like these bright lights, or not like bright lights but like rainbow colors shooting out of my eyes. Doug states; “Now I’m on the Depakote and now all I see is these sudden all these bright lights, instead of the rainbow colors now it’s, now it’s when I get these attacks now it’s just like seeing all of these, you know, the head, you know, like the brain’s ex, you know, the head’s exploding.” Pain doesn’t get enough attention in the discussion of brain injury. Brain injury is too often thought of as simply a cognitive disorder, but in Doug’s case, it is the pain that is the biggest limiting factor pain from his spasticity, pain from his attacks.
I would leave early, and I had to do that a lot, a lot of the plate hurt so bad that I couldn’t take having to work as fast as they work,
Fred’s states that he gets headaches regularly especially if he doesn’t get enough sleep. The biggest obstacles in his recovery now appear to be more physical, neurological and pain problems.
Headache is probably the most common complaint after any head or brain injury, whether mild or severe. Fred does have continuing but improving headaches. He says:”Well, it’s, if I don’t get enough sleep, I definitely, I get headaches and if I go and I don’t have enough sleep and then I sleep and if I don’t have a constant amount of sleep, then I get headaches. Even if I miss a nap, I’ll get headaches.”
Gina describes the migraines she gets; “I get migraine headaches that are just really, really bad. I can call him and, in the morning, and say, I’ve got a migraine and he lets me come in. I’ll take the Imitrex or whatever I need to take and let’s me come in at 10:30, 11:00 whenever I’m feeling better and I, my pay is not docked.”
“And so it’s hard to describe how much that hurt to do that, and how my lower back hurt so badly, did from what it does. Yet the human desire to, to accomplish, not to accomplish but, but to be able to do things again within me – I grew up learning to push myself very hard physically, generally anyways, but I wasn’t, had never learned to push myself through pain as such. But, you know, I, that was necessary to, to get to where I, I could.”
What were your biggest obstacles to success in your return to work?: “Memory and pain. Memory and pain and fatigue, and I’m sure there were other ones too.”
Kelly explains she did have headaches while in the hospital and how she handled it: “But, I was getting headaches in the hospital and then I’d ask for a Coke or something caffeine about 10 in the morning. And I’d get one and I wouldn’t get a headache. So, Thanksgiving when he let me go home, he gave me all these prescriptions; and, I said, â€œMom, just make sure I’ve got some Coke at home.â€ So, 10:00 every morning I have my Coca-Cola and I’ve never had a headache.”
Do have problems with headache?; ‘Once in a while, not very often though.’
When did you start to notice the neck, discomfort neck, which you call now arthritis?: “It’s been diagnosed. Um, it’s in my book. And I just heard it, because in doing the audio portion of my book, and I just heard that chapter. I should be able to pull out the “I know”, because I’m a COTA, certified occupational therapy assistant, I noticed it, mostly at work. And there’s a specific date that I was diagnosed with arthritis in my neck in the 2000s. Those with head injuries often suffer neck and back injuries, because the extreme acceleration deceleration that creates the head injury, can also subject the neck and back to the type of forces which can do permanent, even structural damage. One sign of structural damage is radiated pain and loss of feeling to the extremities. With a neck injury, this would be in the arms and fingers. With a back injury, it would be in the legs and buttocks.” Pain down your arms?No. I do get, I should not say no. I do get numbness in my fingers. Not at the same time, and usually it’s when I’m sleeping. I’ll wake up. I had carpal tunnel surgery, probably nine years ago, and I’ve been going to a chiropractor now for about four years. And when I feel the numbness, or when I recognize the numbness, and then I go to my chiropractor, I’ll mention it to him, and, and he’ll give me an adjustment, and he’ll discuss, you know, tell me where it was, and, and he can directly tell me what part of my spine needed to be adjusted that –
In this book, my memoirs of recuperation from the car accident. I am sure you will find a new compassion for the pain, confusion, anger and hatefulness I went through. When I finally learned how the normal world lived, I began to appreciate any abilities I had that even resembled normal.
Did you miss work because of pain related problems that you were having?: “A little bit. But my issue was my sleep issue.” Do you find yourself getting extraordinarily fatigued at work?: “It depends on what I do. If I have to, well depending on how I do it, when I worked at Best Buy, I used to do a lot of straightening. I can sit. I have a hard time walking and standing. During the fall and winter months there is a lot of times when I use a cane because of my knees. When I go to something to where you have to, an example would be church, where you have to stand and sit, I sit. And it hurts me to stand and I begin to sway because I have no equilibrium.”
What does hurt?: “When they stretch you out and your muscles are really tight that is about the only pain you got.” What about your shoulder?: “My shoulders sore yeah â€“ I didn’t really know if that was from the accident until they told me.”
Quinn talks about his pain issues: “Unfortunately I’m, I call it, I’m on the world’s longest roller coaster ride. I have good days. I have bad days. I have good weeks. I have bad weeks. I have good hours. I have bad hours. So, I get up in the morning thinking all right. I feel good. I’m going to go to the gym. You know, an hour later I’m in pain. I’m, my head is under a lot of pressure and I’m, I’m just lost.” Now, you’re talking about when you go to the gym, you feel the pain. Where are you hurting?: “My head.” And it’s entirely your head?: “Sometimes if I go to the gym and if I even like yesterday or, or the day before I went, the day before yesterday, I went to the gym and I exercised and in the beginning of exercise, you know, pain went right to my head. So, I had to slow the exercise down and try and work through the pain. As far as the pains, I get regular exercise pain as far as I didn’t go to the gym for a week because I was wreck last week. Now, to start
lifting weights again, it’s like starting over again, so I get that muscle, muscle fatigue or muscle pain but that’s, unfortunately, that happens a lot.”
Do you get any sort of pre- headaches symptoms that you might associate with a migraine? Any aura’s, any sensations that the headache is coming on?: “No. My wife will ask me what’s going on and I’ll just say I’m surfing. And what I mean by surfing is all of sudden, I’ll get a wave of a headache and it’ll just feel like a wave is going through the head. Sometimes it’s on the right side. Sometimes it’s on the left side. Sometimes it’s the whole top of the head. Sometimes it’s the back of the head and so the roller coaster ride becomes a surfing incident and sometimes that’s all day long. Sometimes it’s one minute and I’m done. When you’re talking about the roller coaster, does that happen at the same time that your pain starts or is it before?: “I call life for me right now a roller coaster ride because of, I just had a three-week period where I started on a new drug and was weaning off another one. I had three weeks of excellent physical activity of going to the gym, very minor headaches. So, I was on the peak or on the top of roller coaster ride and then when I got off of that one drug, the following week I was in hell. I was at the bottom. I was on a roller coaster ride at the bottom. Lots of headaches, lots of pressure, lots of dizziness, lots of just …
If I could eliminate headache in from your life. How would that change your return to normal?: “The headaches I’m used to so I consider it normal. The pressure, I guess I consider it all normal for now. But as far as eliminating it, I think the, I think the pressure is more of an issue.” How do you define the difference between that pressure and a headache?: “I don’t know. The headache I can take Advil and the Advil sometimes works whereas the pressure is a, just a sit and wait type of thing.”
Do you feel the same emotional connection to her that you did? You described a cognitive level, how much you appreciate her, but do you think you feel the same emotional attachment to her, like you did before? Has it changed?: “I think it’s enhanced. Waking up in the hospital and seeing her â€“ seeing her there and saying to myself oh good, and then passing back out. It’s having somebody like that is, what would I do without her? I mean I’ve gone through some painful headaches that were very suicidal. And we do have guns, we do have a license, and I was looking at her sleeping and looking at the gun next to her, and I had to ask her to hide the guns. I was in so much pain and, and it just, you know.”
Is pain or fatigue a potential variable factor in that?: “Absolutely. He, he definitely gets fatigued anytime he has to do any significant amount of physical exertion, or mental exertion. He gets very fatigued; and the fatigue may play a factor; but when he’s in pain, and he doesn’t feel well, he definitely tends to act out much more and much earlier in a conversation.
Explain to me the role that fluorescent lights play for you.: “Well I think it could be a combination of the two things that I’ve been able to kind of pinpoint. I think there’s just something that’s given out in the light itself that after an extended period of time I started to kind of get a headache building in the back of my eyes, plus the buzzing and clicking of them.” You’ve been around Steven enough to see the outward manifestations of what I would describe as two pain disorders he has. One is headaches and the other is his left shoulder limitations. Describe those for us.: “Ah, the headaches are new to me. I wasn’t aware. Now we have overhead lights in our shop and they didn’t seem to bother him at least, not that I was ever aware of. Ah, and they weren’t true fluorescent lights. So to speak. The shoulder I’ve been aware of that because when we would go pick up furniture, we’d have somebody call us and say I’ve this couch or I’ve got this come pick it up. Steven really just couldn’t. I’d usually have to get somebody else to, to help if there was much lifting. He did what he could but he just couldn’t do that much. So his, his left side was really just not, non-func, I don’t want to say non‑functional totally but, um, it was, it was going to prevent him from working in the field.
Talk to me about your headaches.: “It’s pretty much a constant, I mean, even when I don’t have a headache, I have a headache. I always – like, even right now, I have from like right here all the way around to behind my eye right here I just have a constant ache and it’s always there. Like earlier when we were in that room, that just became so magnified that I couldn’t even deal with it and when the lights got flipped off, it was kind of ebbing off a little bit where it was just my normal everyday pain and when the lights flip back on it’s like instant everything was back and I just have to walk out of the room.” Well, let me see if I can give you an analogy from your other pain issues. Your left shoulder always hurts some.: “Yes, sir.” If you had the poor judgment to actually show me how, how you can’t raise it, it would hurt more, right? So your constant headache pain is worse than the pain in your shoulder but how would you describe it relative to what your shoulder might feel like if you actually put it straight how where you were working overhead for half an hour?: “There wouldn’t be no work overhead for a half hour, it just wouldn’t happen.” So you’re unable to raise your shoulder without stabbing pain?: