Shannon: So I have to just be very careful about medications. So when a doctor introduces something new they have to introduce it at the lowest level and then I have to gradually work up to it, but I have to be monitored. And that’s part of my concern, with my PCP is that, she says okay we’re going to change this or we’re going to give you something new. But then nobody monitors me, and I have to monitor myself and then that can be a very dangerous situation if I’m by myself.
Interviewer: Absolutely.
Shannon: Because I mean you know when I was taking the metformin, thank goodness my daughter was home, because there were several times where I became paralyzed, I couldn’t move. And then I realized now that obviously it was too much for my system, and now we’re doing slow, gradual. But being by yourself and not being monitored is very dangerous, so I’ve had quite a few situations like that, so.
Interviewer:  I’m wondering how you make sense of like these chemical sensitivities, and how this affects your body and the paralysis, what your thoughts are on that?
Shannon: Well it just kind of depends on the medications, I’ve become way more aware of my medications and way, way, way more educated. Before the doctor would just say, here’s a pill take it. And I would take it. And I’ve had some situations where I was misguided and almost died and now I’m more aware and more in control of my health and my medications. Whereas before if the doctor said, you’re supposed to take this medicine, take it. I would do it and there’s been so many times where it’s turned out to be a very bad, bad, bad situation, you know? Like when I was taking the benzos I think I was taking the clonazepam, I’m not sure exactly which medication it was but it was way back when, 14 years ago, 16 years ago. And I believe they had me on 10 milligrams. And that was like couple times a day, so I mean I was doing that for a couple years. And then at one point, well then they wanted, then they decreased it, which was fine, you know. And then it got to a point where I went in one time and the nurse said, well we’re going to take you off the clonazepam but we’re going to give you this. And I was like, why, the clonazepam works. She’s like, well we’re not doing that anymore so we’re going to give you this, either take it or leave it. And of course I wasn’t educated at that time, and so being forced to take the medication, I took it not realizing that I was not supposed to take it the same way, 'cuz nobody educated me. Nobody said, we’re going to take you off this, and we’re going to give you that but this is not the same thing so don’t take it the same way. And I did not realize that, so I was taking it the same way I had been taking the other medication and I almost died. And so, so yeah that’s in my record. So, I think at that point they classified me as trying to commit suicide, which I was not, you know? I mean, no. But I ended up in the emergency room and the doctor was like, why would they do this, they should have weened you off that medication before they gave you this medication. So, yeah I’ve become way more educated on my medicines and I don’t always take the word of my physician, I always second guess everything because of all the experiences I have had.

If you take enough naproxen it helps. It helps with the aches and pains. Nothing is as good as the oxycodone. I mean that flat gets it done, but I understand why they're trying to wean people off it. It's a huge problem in this country. Massive problem. It was steroid shot. In fact, it was so uncomfortable, I've never gotten another one. I just deal with the pain. I don’t know whether you know the procedure, but you literally hold massive weights in your hand to dislocate your shoulder, and then they go in with a needle about this long and try to find the spot that hurts the most, so there's a little bit of probing. And then when they find that spot that really hurts the most, they let it go. And it works. By God, it works. It's very effective. But I just remember the doctor saying that you want to sit down. And I said, no, no, no. Billy badass Greg, he don’t want to sit down. He's going to stand up and take this shot. And I wish I would have sat down.

I just—I’m not a big guy for pills. Don’t like surgeries. Well, my neck surgery was great. My knee surgery turned out. So I got to run, walk—yeah. At one point they pumped—I think pumped—got over 250cc of fluid off my knee before the surgery. They just kept pulling it out and I’m like—Yeah, what are we going to do about that? My doc’s like—you need a surgery. You don’t have to have it. You can keep coming in and we’ll keep pumping the fluid off your knee, if that’s what you want you want to do. Okay, I’ll do the surgery, because this isn’t working.

The medication I’m on now for the headaches has helped a lot. I made a promise to the doctors I started seeing this last January, 11 months ago, that I would follow their advice and stick with the medication because, like I said, I probably didn’t give a true effort. Meant to, but I probably quit too early, so I stuck with it, and I have felt not only the gabapentin has helped with the nerves, but the other medication has helped with the headaches. I still have them, but they're not as severe, and I've only had two days probably since March where I had a hard time getting out of bed. So I feel like although nothing is fixed, they're much more manageable.

Yeah, I get headaches all the time. I mean that's almost a daily thing. I mean, headaches, and I get used to them. Sometimes, and my wife would tell you that too. Sometimes, and that's what she'll say. Oh, it must be a bad one. Very rarely will I take anything besides this and a few other medications, but once in a while, I'll take acetaminophen or whatever. Tylenol. I'll take two of them, and she's going oh wow. You just took two Tylenol. It must really hurt. And that's the truth.

Andrew: So, if I can’t sleep, I’ll maybe put some time into the job. Well then it pays off cuz I worked harder than the next guy. So, I’ve gotten ahead a little bit because I can’t sleep. So, I work. Sometimes, not all the time.

Interviewer: Ok, it does sound like one of the things that’s been really helpful to you is that you’ve often…

Andrew: But it's catching up with me too. Yea, it’s catching up with me too. Lack of sleep is killing me now too. Can only do it so much, and then... A day or two, ok, three days, it’s killing me now.

Interviewer: Do you still take melatonin?

Andrew: Trazodone, kinda. Melatonin doesn’t do squat for me, really. Trazodone, and actually my counselor’s like “does the Trazodone do anything for you” and I’m like “mmm.” They are trying to put me on Ambien, and I don’t want to do it. I really resist something that strong. I just, I hate prescription stuff, it scares me to death. I try for anything I can naturally. 

Some medications don’t really do their job. Like I was having problems sleeping so they gave me the Ambien and then something, another one similar to Ambien. I took those. Wide awake and hallucinating. It was—so I couldn’t take those. Then I’m trying to think. There was something else they gave me, and it had no effect. Something like something to make me sleepy. Didn’t have an effect at all. Every time I’ve had surgeries or had to go under since then—of course I’ve woken up in surgeries prior to Marine Corps, but it’s like they have to do extra dosages just to keep me under. But then other things like non-drowsy Benadryl I take one of those, knocks me right out.

Interviewer: The process of going through sleep therapy, and now you're able to sleep a little bit better and keep the CPAP on. Have you noticed if that's affected your kind of daily functioning, how you're feeling when you're sleeping better?

Mike: Absolutely. It's definitely made me, I mean, I definitely function better, and I definitely, I have a lot better outlook, so to speak, because I've gotten rest. I mean, it's wonderful. I mean, I would pull the machine in and show you if I could, but I was so shocked. I mean, I wanted to have a party. I got eight hours of solid sleep. And two years ago, if me and you would have talked, uh-huh. Eight hours was like a dream. That was long gone. That's never going to happen again. And now, I’m averaging anywhere from four to five hours a night, and to me, that's wonderful. And if I’m not feeling good and/or something, or I’m feeling really good, I might get another eight-hour night's sleep. I mean, it goes back and forth. But for me to sleep eight hours is like just unheard of. I mean, I don't know what to say. And it does. It gives me that boost. And my wife understands this. Me and my wife talked about it the other day is, by the time the end of the day comes around, I’m done. I don't have any juice left, and it's usually by about 3 o'clock. I’m just dragging, and I’m ready to go to bed, but I know I can't go to bed because [laughs], and that creates a lot of personal problems, because when you're done, you're done, and you don't want to do a lot. And it's not because I’m being lazy or, it's because I’m in that state where I have no energy. And that's one of the biggest things is the fatigue. And I don't talk about that much, but it's terrible. I mean, the fatigue, whatever it is, it's terrible, and when it hits, it hits. And, yeah. I mean, but it was much worse when I wasn’t getting sleep. Now that I've started to get sleep, yes, I feel better. Yes, I function better, and there's no doubt. My therapist would tell you that, because when I first started seeing him, I couldn’t even finish a sentence without forgetting what I was talking about. So, as you can see, it happens to me now, but nowhere near as bad as it used to be.

Interviewer: What role, if any, do you think your experience in the Gulf War has played in your current health?

Brian: I don’t know. I know it's led to some anxiety, some sleep difficulties. I mean I, mostly anxiety. I have been taking some duloxetine, which has helped quite a bit, but still, I don’t know.

And I started to have panic attacks. I thought I was dying. The emergency room civilian care get three times, thinking that I was having a heart attack. My heart issues racing, racing heart, dizziness, nausea. Diagnosed as a what do they say a panic attack, anxiety. They gave me more pills. So at one-point VA had me on five Klonopin a day trying to get me, break the cycle of these panic attacks. Five Klonopin a day, three Xanax a day, two to three Xanax a day. Five Klonopin. And SSRI called Trintellix because the others hadn’t worked. Ambien to sleep, highest milligram 10. Civilian care I was getting 12, that was another issue that I had prior to military care was sleep as well. Having to be prescribed Ambien as well. And treating all of those things with marijuana. Psychological issues, anger, depression, possibly depression I don't know. And sleep, and mood. And still continue to use that to this day.

And he tried me on a number of medications. None of them seemed to help at all, and on my part of it, I've never been a good one to take medications for very long. Though believing in the power of medicine, I guess I was afraid to either become addicted to it or I grew impatient when I’d take them for a couple weeks, and I don’t notice anything. They must not be working. Why take them? And then you get the warnings about some, and I've had clinicians even say, you shouldn’t be taking that. That's really bad for your liver, or that is addicting or something like that, but the other VA doctor gave it to you. So you hear all that conflicting stuff, and that's good because we should have different opinions, but there's this fear. And I have two family members that have died from addiction, so that's part of it too, my hesitation in taking them, but knowing that I have to take more if I want to solve some of my health problems

Joseph: I signed up for vocational rehab. Body aches, everything going on. Still going to the VA. They were just giving me pills. More pills. You know, kind of a—Well, here. Don’t know what this is, but take it. See what happens.

Interviewer: And what happened?

Joseph: Well, I got tired of taking pills, is what I got tired of. You’re not treating—you’re not trying to fix the problem. You’re trying to—to me, pills mask it. They don’t treat it. They mask the pain. Yeah, you take it away for a few hours, but it’s still there. Why is it still there? Why does my back still hurt? Why does—my shoulder’s burning right now? Why are my joints sore? My grip is getting—my grip is not as strong. I can’t squat down and stand up without assistance. I’m only 54. Well, we don’t see nothing wrong with it. Well, why does it hurt? Well, take this pill. I don’t want any more pills. Unless they’ve got a cure pill. I’ll take that.

Lack of sleep, is a major trigger. If I don’t get good sleep, which I don’t, that definitely aggravates the Gulf War syndrome and my fibromyalgia, yeah. And I can tell, I’ll get like my arm, my left arm will start to really ache and just recently my, excuse me. Like my left shoulder blade started doing that too. So that’s, so I’ll have physical symptoms that will become worse, so you know I just pay attention to my body. And I think that it helps not being on pain medicines, 'cuz if I could take pain medicines, then yeah I would be taking aspirin or acetaminophen or something like that. But I also think those medications for me, numbed my system when I was taking them long, long time ago to where of course the pain goes away. But, now that I can’t take them I have to listen to my body. And so as a result, I’m more, because I’m more mindful of my body, the VA classes have helped with that. And that’s mainly for me because I can’t take the medicines. But yeah I’m very, very aware of my body, so. Sometimes it even causes me anxiety, so sometimes it’s not so good. But, yeah, I mean it just, yeah 'cuz when I, if something like triggers in my body then it will increase my anxiety, so yeah. That’s kind of a tough one sometimes.

Well with the cholesterol medicine I had the muscle cramping and spasms, that was really bad. Some of the anti-inflammatories, there’s a few of them Ketorolac, I think is what it’s called. I was given that once and looked like Professor Klump from the movie. You know my hands swelled up real bad. All the way up my arms and down my legs. The sides. Yeah my hands looked like the Klump… At one point I was on Vioxx, and then another kind of medicine similar to it. And then something that went with for cholesterol. But for some reason those three particular medicines weren’t supposed to be together. And I started having a lot of stomach problems. And it was around the time I switched from Salisbury VA, from Salisbury, North Carolina VA to the Winston-Salem clinic VA. And the first thing the doctor said was you know you’re on these medicines and you shouldn’t be. So he switched me from the Vioxx and a couple of the others to I can't think of the name of it. It’s basically the prescription Aleve. I guess Naproxen, something like that.

Where I had the biggest problem were two medications. The brain fog and the just I couldn’t think, and it was like I was rebooting, was the drug they kept trying to put me on, or drugs, and I wish I could remember the names, but mental health drugs they were giving me were not working. That was definitely causing me problems. And then, because I have high cholesterol and a few other issues, and they were trying this and that, but it made my joint pain so much worse at night, and my wife would tell you this. I would ball up in tears, it hurt so bad. And, I mean, I could stop taking that medicine, and it would back off. But, again, I can't really say that that's the VA's fault because I had problems before I ever went in the military with drugs. I just didn't know it, except for Demerol. So to this day, I’m very, very, I mean, if you look on my, and it's not right, but I seem to have reactions to about 60% of the medications that I take.

Because of my illness, I have a myriad of pharmaceutical interaction problems. The VA calls them drug allergies. The Gulf War Illness expert that I know in Georgetown University says that I’m probably not allergic. They're actually overdosing me because they're not taking into account my neuroinflammation and degradation, which makes sense when you see the list of the meds that are all acting on my nervous system that are ones that I haven't been able to tolerate.

And one of the side effects for the headaches was suicidal thoughts. And, okay, so what? I got into a state, a funk if you will, that I was obsessed with the idea of suicide. I didn’t think it was possible for somebody to feel that way. It was scary to me. It was daily. Minute by minute I wanted to commit suicide. And luckily for me, I just thought, okay, it's got to be this medication because I've never felt this way, as depressed as I've had feelings or whatever, and I just called the doctor and said I’m stopping it. And it was about two weeks, and I really felt like somebody turned the lights on again. It was just a bad medication. So that kind of scares you to take them too.

But when I got hit by the firetruck they took me to the hospital, and of course the hospital has my records, but the, and I did do a CT scan and my daughter kept telling them, she’s allergic to the dye. And they were like, yeah, yeah we know, we know. Well the next day, of course they gave me everything but they gave me so much of it, that the next day I had a hard time walking. And so, I got up and I started walking, and I was like, it was almost like I was like drunk. I call it that I was drug drunk because I could barely walk, I mean it was like I was drunk, drunk on drugs. And, so that took me about three, four days to recover from that. So I had a really tough time with that. But yeah, so I have to just be very careful about medications. So when a doctor introduces something new they have to introduce it at the lowest level and then I have to gradually work up to it, but I have to be monitored. And that’s part of my concern, with my PCP is that, she says okay we’re going to change this or we’re going to give you something new. But then nobody monitors me and I have to monitor myself and then that can be a very dangerous situation if I’m by myself. Because I mean you know when I was taking the metformin, thank goodness my daughter was home, because there were several times where I became paralyzed, I couldn’t move. And then I realized now that obviously it was too much for my system, and now we’re doing slow, gradual. But being by yourself and not being monitored is very dangerous, so I’ve had quite a few situations like that. But, because when I first came back I didn’t realize, that there was a Gulf War syndrome, I mean nobody did. But I’ve had to go through a lot of trials and tribulations basically of my health because I would, became allergic to everything. I became allergic to all antibiotics, sulfurs, statins, all pain medicines, latex, just the list goes on and on and on. And so I have to be very careful because chemicals and smells will trigger me also. But I had to go through a lot physically to find out that I was allergic to everything, you know? And so now as a result of that, now I have to be very careful, not to get sick, which I’ve been very good about that so I don’t get the flu and things like that. I don’t even get the flu shot because I know that that would probably trigger an allergic reaction. So I’ve become very chemical sensitive because of that.