Strategies for Managing Pain & Vertigo
Many of the people we talked to described strategies for managing physical symptoms like pain and vertigo. Although some people found medications to be helpful, other Veterans we interviewed said they preferred not to take medications, instead opting to deal with the pain or specific symptoms of their injuries head-on or with alternative therapies.
Using medication to manage pain
People reported mixed experiences with taking prescription medications to manage their pain. Many found medications to be a useful and necessary tool for coping with their recurrent headaches. Kevin told us that he absolutely needs pain medication in order to function and told us that “if I do not take it, my head starts feeling so bad, I don’t want to live, OK…I ran out of it here a few months ago and I just, I, I wanted to kill myself, OK. I wanted to literally kill myself because it hurt so bad, because my thoughts just started going everywhere.” Others were reluctant to start taking prescription medications for their pain, noting a family history with addiction or other concerns. Another Veteran said that his VA doctors prescribed him “lots of painkillers, lots of opiates. You know? I’m sorry, I have a family. I already have enough memory problems. I don’t need to be stoned out of my mind so that I can forget what few things I can remember.”
When Kevin doesn’t take medication for his headaches, the pain will be so bad that he “can’t stand the way his brain feels."
When Kevin doesn’t take medication for his headaches, the pain will be so bad that he “can’t stand the way his brain feels."
And the VA, when they put me on this Depakote, I mean it’s a medication I will never not be able to take again. If I do not take it, my head starts feeling so bad, I don’t want to live, OK. I, I, I will not be able to stand the way my brain feels. I can not. I ran out of it here a few months ago and I just, I, I wanted to kill myself, OK. I wanted to literally kill myself because it hurt so bad, because my thoughts just started going everywhere. Anxiety started setting in. I just went into a depression that was so dark and deep it was horrible. And that was just recently. And I called the pharmacist and I said, “I need the Depakote man. I ran out and my script and I’m just not getting enough and I keep running out. I gotta have it.” So now I’m getting adequate amounts so that I don’t run out. But this is where it’s at.
Several Veterans who tried prescription medication for their pain said they the medications did not work, or that even if they did work, they were accompanied by other undesirable side effects. One Veteran told us he has been on over 20 medications, but they “just made me so zombie-like, that I couldn’t think this quickly or like communicate this quickly at the time…and I was having a lot of erectile disfunction and leaking urine a lot.” John has tried many medications, but none have worked well or been without side effects. He says that “if you can get one to work it’s great. But I know Neurontin worked for about a year and a half, but it was like wrestling a live tiger, because you were so stoned that you could barely function for a couple hours in the morning. It was hard. It was really just quite dreadful.”
To manage his pain John has taken several different drugs, with little success.
To manage his pain John has taken several different drugs, with little success.
The last year I worked here I missed over half my time from pain, and part of it was stress and part of it it’s just the brain injury. So, when you wake up, for me, when I wake up in the morning the pain starts and it goes all day. OK, so for me if I sleep - when I was working I slept typically seven hours, seven and a half hours a day. Now I’m retired I sleep ten. My headaches are down 1.5 points from 7.75, 7.5 to 6.75, 6.5 max. So, you have to find some way to deal with the pain, and they’ve given me every drug known to man to control the pain. I’ve had Lyrica, Neurontin, Propranolol, Depakote, Amitriptyline, Nortriptyline, another Triptyline I don’t remember, and I’ve had so many others I just simply don’t remember. And none of them worked. If you can get one to work it’s great. But I know Neurontin worked for about a year and a half, but it was like wrestling a live tiger, because you were so stoned that you could barely function for a couple hours in the morning. It was hard. It was really just quite dreadful. Now that’s the thing TBI’s have to deal with every day - either give you narcotics for the pain, and if they give you narcotics then you’ve got that dull sensation all the time, you’re never the best you can be and you have weird things happen.
After trying several medications and finding no relief, Jake worries he has run out of options.
After trying several medications and finding no relief, Jake worries he has run out of options.
They put me on Gabapentin for a while. An extremely high dose, and I don’t remember a couple months, because I just I couldn’t feel anything, I couldn’t, I couldn’t you know like physically or emotionally, and it wasn’t really that it “numbs” me because I know there’s plenty of SSRIs and other shit out there that will do the same thing but it just I literally didn’t notice anything around me. [And then, there was a time when] I didn’t have refills for about a week and so I came, I came off of them. And for that week I was, all of the sudden I, I just like realized, it was like opening a window and looking out and seeing like the world around me, and I realized that I’d been, yeah it’s like I’d been stored in a stuffy room for a month or two, and that’s exactly what it was. It was taking away all my sensory, you know, and it made me extremely dizzy, and I was I was stumbling, I was running red lights, it was because I wasn’t, all my senses were off. And, so I spoke to my primary care team, and said “I don’t want, I don’t want to be on this. We got to find another way.”
But, I mean, the narcotics weren’t good for me [either], and the DOD had just given them to me for years. And, and I told them the same thing, I don’t want to be on this stuff. There’s got to be, you know, why don’t we, why don’t we take the time, give me, you know, a MRI or something, you know, take a look, or, I don’t know send me to Ortho, something, but I’d been moved around to so many different commands so, you know, I could never stick with one doctor. That was the issue, but yeah like I said, even the even the narcotics kind of almost helped better than the Gabapentin. I said I want off this shit and my primary care doctor said basically “this is the end of the line, there’s nothing else we can do for you.” I said “there’s no way you just said that to me. There’s 7 billion people in the world, and you’re telling me that I’m the, I’m the, I’m the tip of the iceberg. You’re out of your mind.” And I looked back through my notepad. And I said “our last conversation you said there was, the next medication was this, so there’s no way, and it was clear-cut, it was it was the, the next med, the next newer Gabapentin, you know, it’s the one that’s five times stronger and used for fibro and used for, you know, diabetic nerve pain and all this other shit. It’s, it’s that the VA doesn’t normally cover it because it’s expensive. And I was like fucking “dude, you talked about it last time so you’re going to do it,” and it took weeks, and I was in excruciating pain for weeks. I spent most of my time in bed, trying, I was trying so bad but it was just terrible. Finally got on Lyrica, and it helped but gosh it messed me up. I was running red lights again. I was slightly dizzy, but nothing like the Gabapentin, but my senses were off, and then my body got used to it and I was right back to where I started.
My body got used to that low dose after a month, maybe not even. And so I was like “what are you doing? You gonna bump me up every time this happens, or or are we going to do some diagnostics?” And his response was always “well you don’t treat constant pain with meds” and I said “no shit that’s what I’ve been saying all along, is stop treating me for chronic pain, and send me to Ortho, send me back to pain, you know, the Pain Clinic or whatever.” Because the Pain Clinic, kind of went through the same thing but they recommended, they’re the ones that originally recommended, “hey, let’s see what Gabapentin does and let’s revisit.”“Well we failed that drug so maybe we should revisit.” But that wasn’t his answer. Anyways, so he bumped me up on the Lyrica, and that’s where I’m at now. But my body’s getting used to, like I, I have days where it breaks through and it puts me in bed. I have days where it’s so bad, but yeah, there’s no, there’s no next line in my notepad for this one. There’s no next conversation…
Several people were able to find relief from over-the-counter medications, like Excedrin or Tylenol. Sam described having frequent headaches that will suddenly come out of nowhere and “for no reason. I’ll be like drinking tons of water, sitting down in a cool area, you know, just doing my thing. And then boom, headache.” After trying a blood pressure medication for his migraines – which didn’t work because it lowered his heart rate and made it “the hardest thing in the entire world” for him to work out – he has found that he can “drown it out with eight hundred milligrams of my Motrin, which I have a prescription for. It takes care of the problem.”
Alternatives to medication for relieving pain
Many of the people talked about managing their headaches and pain without medications. Luke tries to stay ahead of his headaches by “hydrating properly and if I’m taking care of, make sure I wear my sunglasses and that I attack stuff earlier on when it happens so that I don’t wait until it’s somehow I can’t stand it and then I try and take something, and so I’ve learned those - like, as soon as I feel something coming on I’ll immediately try and, you know, find a dark place.” John has found that running helps quite a bit with his pain – “you get a lot of endorphins when you run, so when I’d run, pain goes down to 2, you know?” He used to engage in other types of exercise – like martial arts – but found that the twisting motion induces his vertigo so he needed to find a different type of physical activity.
To deal with his pain, John started running.
To deal with his pain, John started running.
But, I started running, and running actually - you get a lot of endorphins when you run, so when I’d run pain goes down to two, you know?
I: Yes. So, you were able to get enough of your coordination back?
Yes. Yes, it did come back, and a lot of it does come back. It may not seem like it does. I mean, I wasn’t, like, fleet of foot or anything. I mean, I run about an 8.5, 9-minute mile, but I ran 11 miles. The Shamrock Run, that’s up here? I ran 15K, I ran it. I finished - I started dead last, I’d never run a race before and I didn’t think I’d be very good, and I finished 79th. And for the first three blocks you just walked, because it’s so crowded you couldn’t run. But that day I ran an 8.5-minute mile. But the running helps, doing - having an activity helps. But for me, I can’t - I would like to do, because I was in the martial arts program, but I can’t do it because I can’t - for one thing, I’m arthritic in this shoulder. I can’t do the twisting and stuff, it induces the vertigo. And believe me, when you get vertigo, of all the things I experienced, the vertigo is the worst. You know, I can deal with everything except the vertigo.
When he feels a headache coming on, Luke will try immediately to find a dark place to “zone out and close my eyes.”
When he feels a headache coming on, Luke will try immediately to find a dark place to “zone out and close my eyes.”
Try to eat better and do all the things you’re supposed to do to support an active healthy lifestyle, you know. I seem to have more success if I’m, you know, hydrating properly and if I’m taking care of, make sure I wear my sunglasses and that I attack stuff earlier on when it happens so that I don’t wait until it’s somehow I can’t stand it and then I try and take something, and so I’ve learned those - like, as soon as I feel something coming on I’ll immediately try and, you know, find a dark place. Like when I, for instance, when I worked the road, we typically have a substation or a fire station that I could go to and, you know, close the blinds and just take a minute to zone out a little bit and close my eyes. And I would start chugging water right away. I maybe would take like my Excedrin Migraine like right up front, just to make sure, and that would usually get me through, and I would either be successful in mitigating it or it was just one of those things where I would delay the inevitable or I get to that point.
I: And how long does it usually last once it comes on?
If it’s really bad I don’t seem to ever recover until like I finally find a way to fall asleep and then when I wake up I’m usually pretty good to go. But there’s been days where I just couldn’t go to sleep because of it - so stabbing sharp pain, usually in a pretty specific area. But I’ve had MRI, you know, back when I did my initial consult for neurology I did an MRI and stuff and so it’s frustrating when you only expect that there’s going to be something there that they can pinpoint and they say “Oh yeah, this is it. We know how to treat that specifically.” So, when you don’t have something that they can say “Ah hah,” then it feels like they’re guessing, they’re just throwing stuff at it. “Let’s see if this works. Oh it doesn’t, we’ll increase the dosage. How about this? We’ll combine these things.”
David was issued a Cranial Electrical Stimulation device from the regional VA to help with his headaches – “it was originally created, and we tested it from the company, to help lower your tension and stress level for PTSD, so it’s proven to do it for that. But then I guess they also proved that it helps with traumatic brain injuries in certain people.” He has only been using it for about six weeks and isn’t sure yet whether it is working.
David talks about using an Alpha-Stim® device to help alleviate headaches.
David talks about using an Alpha-Stim® device to help alleviate headaches.
The Alpha-Stim®. You clip it on your ears and it sends whatever betta gamma, whatever kind of waves to your brain. So, it was originally created, and we tested it from the company, to help lower your tension and stress level for PTSD, so it’s proven to do it for that. But then I guess they also proved that it helps with traumatic brain injuries in certain people. So, the regional VA issues the Alpha-Stim® machine to try and help, you know, alleviate a little bit of the headache, and the other problems, you know, and things like that. Like it helps a lot with tension and things. I’ve only been using it for about six weeks so I really don’t know if it actually helps with the headaches. You know, last time I used it I figured it took about three months to actually see if it made a difference, so as far as the TBI goes I can’t, I couldn’t tell you yet if it’s worked for that.
Jessica told us about receiving “phenomenal care” from the VA polytrauma clinic – they helped her create plan that includes lots of alternative therapies and her headaches have gotten “quite a bit better.” “They’ve done the physical therapy. They did acupressure, not acupuncture, but it’s doing the different pressure points with an electrode machine, it’s very interesting. They have been doing a lot of alternative type medicines, trying to do pain reduction. That’s been very interesting, and even sent me to a vision clinic to try to help with some of those symptoms.”
Jessica has received medication, physical therapy and a lot of alternative therapies for pain reduction through the VA.
Jessica has received medication, physical therapy and a lot of alternative therapies for pain reduction through the VA.
As long as I don’t hit my head again it usually does tend to get better. I have figured out the proper doctors are incredibly important. Because for the first while, right after I was discharged, there wasn’t a neurologist on the planet who would touch me until I got on VA care because it looked like workman’s comp, so I guess it was almost two years before I saw a proper neurologist again. It’s the one positive I can say about VA care, once I finally did get back on VA care the polytrauma clinic in Tennessee and the one here in San Antonio have been phenomenal in actually getting me care.
I: And what kind of care have they, like what has that entailed?
They gave me the proper medication and then they’ve done the physical therapy. They did acupressure, not acupuncture, but it’s doing the different pressure points with an electrode machine, it’s very interesting. They have been doing a lot of alternative type medicines, trying to do pain reduction. That’s been very interesting, and even sent me to a vision clinic to try to help with some of those symptoms
…I think just the overall, like they, they go through every medication you’re taking, every, they sat and talked about every head injury that I had. They made a timeline, they even, even the ones in Tennessee went through my diet, like what other supplements are you taking, they even talked about the pre-work out that I take and like how it can affect the symptoms that I have. And then talked to me about alternative medicines and, because at this point I take medication, I’ve probably taken just about every medication out there. I’ve looked for every solution. But giving me alternative to medication is really important to me. So, them offering me like, we’re going to give you all of these services that are non-medication, I don’t know they just, they gave me quite a bit of hope that there was something that they could do for me and that I wasn’t always going to have pain and have memory loss and feel like Specialist Broke Dick. So yeah it’s definitely, they gave me quite a bit of hope that things were gonna progress and get better. They gave me a pretty good timeline and things have gotten quite a bit better.
Strategies for combating vertigo
Several Veterans talked about using strategies – such as the Epley maneuver - to prevent and manage vertigo. The technique, developed by Dr. John Epley, helps to alleviate vertigo in patients who have a condition called posterior canal Benign Paroxysmal Positional Vertigo.
To combat vertigo, John went through the Epley maneuver eight times.
To combat vertigo, John went through the Epley maneuver eight times.
And weird things happen - when you get a traumatic brain injury it can damage the inner ears, and when it does it breaks off all those little nerves. So, you’re constantly, every time you move your head, you have these broken pieces that are just lodging the natural - which causes you, your brain to tell you that you’re somersaulting, so you’re in a constant case of vertigo. And that’s one of the things you can’t prove. I’ve been through the Epley maneuver eight times. The Epley maneuver is used to fix that kind of a problem with the inner ears that have been damaged. And I believe if you’ve been in a concussion with a cannon you can feel it, it hits you, it’s a tangibly tangible thing. But they would do surgery, microscopic surgery, to move those broken pieces. Well a guy named Dr. Epley came to Portland, came up with a way where they manipulate your body, and they take those broken pieces and they move it until they hit the fatty tissue that’s sticky, and it makes them stick to that tissue and that eliminates a lot of the vertigo, not all of it, but a lot of it. For me it was like somebody raising a curtain, I was that out of it.
Margaret has also used this technique and is “quite hopeful.” Although she initially relied medications to manage her vertigo, she found that “the medications they gave me were things that you can become dependent on, such as the benzodiazepines, which do halt vertigo; it’d help a lot. And then I became dependent on them, so that was another issue that had to be dealt with.” She now uses the Epley maneuver to manage her vertigo – she says only takes a few minutes and is something she can do at home every day.
Margaret describes the Epley Maneuver exercises that she uses to improve her equilibrium.
Margaret describes the Epley Maneuver exercises that she uses to improve her equilibrium.
Lie on my bed with your head down
I: Like over the edge? OK.
Head down. Then turn to the right side and hold it for about a minute, with your head hanging. It’s not comfortable. But I was doing something like that, but I was only doing it for 30 seconds, and this is an adaption of those earlier exercises I was treated - taught. So, this is a little different. OK, go to the right for a minute, then you go to the left for a minute, hanging. And then you turn over on your side and hang your own head over the bed. And then, do you want to hear anymore? You guys are probably getting nauseated by this. But, you know it only takes a few minutes and, it’s helping. I’m quite hopeful.
I: So, this is daily, are you
I should do it daily, not twice a day.
(See also: Ongoing Symptoms; Strategies for Day-to-Day Life; Medications for Mood, Concentration & Thinking; Seeking Professional Help for Emotional & Mental Health)