Episode 224 Vicki DeLuzio Epilepsy Awareness Transcript
This transcript is from episode 224 with guest Vicki DeLuzio.
[00:00:00] Scott DeLuzio: Thanks for tuning in to the Drive On Podcast where we are focused on giving hope and strength to the entire military community. Whether you’re a veteran, active duty, guard, reserve, or a family member, this podcast will share inspirational stories and resources that are useful to you. I’m your host Scott DeLuzio and now let’s get on with the show.
[00:00:21] Scott DeLuzio: Hey everybody welcome back to the Drive On Podcast. Today, as you could probably tell, it’s a little bit of a different episode. The guest that I have is in person and also happens to be my wife. So, nice and easy setup here. We just walk down the hall together and here we are. So, today’s episode we’re gonna be talking.
[00:00:39] Scott DeLuzio: Epilepsy and specifically epilepsy as it relates to veterans and how they’re sometimes at a higher risk of being epileptic. Due to the nature of some of the injuries that they may receive IED blasts grenades, bombs, other things like that, that may have taken place [00:01:00] throughout their service could put them at a higher risk of epilepsy.
[00:01:03] Scott DeLuzio: And my wife here, Vicki, she unfortunately has some personal experience with epilepsy being an epileptic herself. And. She’s gonna talk on the personal side of things about how epilepsy has affected her since becoming an epileptic later on in life. This is only a few years ago that she became epileptic and how she’s been able to cope and manage with that since coming up with that.
[00:01:27] Scott DeLuzio: So, welcome.
[00:01:30] Vicki DeLuzio: Thanks, , all the way. I’m across the driveway. .
[00:01:34] Scott DeLuzio: Yeah. Right. So, let. First off, for people who maybe aren’t familiar with epilepsy, what is epilepsy and what kind of is the background on what epilepsy is all
[00:01:47] Vicki DeLuzio: about? So before my becoming epileptic I didn’t know that like one in 26 people will actually have some sort of seizure in their life.
[00:01:55] Vicki DeLuzio: And not all people who have a seizure become epileptic. [00:02:00] So, sometimes kids will have a seizure when they have a high fever and so they can have a seizure once in their life and never have a seizure again. So that doesn’t necessarily mean that they’re going to become epi epileptic. A lot of times people will have a trauma, like, they will hit their head and have a seizure.
[00:02:19] Vicki DeLuzio: Once again, that doesn’t mean they’re going to be epileptic, but they need to be careful because that brain trauma might cause them to have another seizure. So, but so much is not known about seizures. And the brain still, like, we have all this technology and we still don’t know a lot about the brain.
[00:02:36] Vicki DeLuzio: Epilepsy is a neurological issue. There are tons of neurologists out there, and even though there are tons of neurologists, they still don’t know everything about the brain. It’s a crazy thing. So, there are tons of different kinds of seizures. A lot of people think of the grand small seizures or that it used to be called a Grand Mall.
[00:02:55] Vicki DeLuzio: Now it’s called a tonic clonic and that’s when everybody [00:03:00] starts shaking. They’re out of it, and they just have that. Big earthquake shake is what I call it. I call it Vicki Quakes, where you’re totally out of it and you’re shaking on the floor. And people are like, put a spoon in their mouth.
[00:03:13] Vicki DeLuzio: Now they’re gonna bite their tongue. Please don’t do that. Turn the person on their side. That’s what you wanna do. But that’s what people are thinking of when they think of a seizure. But there’s also absence, seizures where people. Just not paying attention. You might see a person just kind of zone out and they don’t know that they’re out of it.
[00:03:33] Vicki DeLuzio: So, that’s what people might have. So there’s to a ton of different kinds of seizures.
[00:03:38] Scott DeLuzio: Yeah. And so I think that’s important to point out because there’s a lot of different symptoms that you might experience. So there might be someone who is having the full on shaking seizure like you might be.
[00:03:51] Scott DeLuzio: Familiar with, like you might have seen in a movie or television show or something like that. But then like you said, there might be also just someone who’s just staring off into space and they’re [00:04:00] absent from from reality right now and you can’t get them to just snap out of it. Right. And it may seem like they’re maybe just ignoring you, but if they’re not, I mean, they are in a way, but they’re not because they’re having that absence seizure and that could cause some problems.
[00:04:16] Scott DeLuzio: So, and like you said, like a lot of this is just a big unknown. Like doctors don’t know why people are having seizures. Yeah. All the time. I mean, sometimes you can figure it out. A major head injury. Or other illnesses or diseases could trigger that type of thing. But sometimes, like unfortunately in your case, the doctors still don’t know what caused your epilepsy.
[00:04:39] Scott DeLuzio: And so, you are now, this is what, four years later? Yeah. And we still don’t have an answer. They, no. Doctors went through all sorts of testing Yeah. For various diseases. Cancer head injuries, drug usage, and everything came back negative. Yeah. Which in a way [00:05:00] you might be like, Okay, well good, everything came back negative.
[00:05:02] Scott DeLuzio: But at the same time we’re sort of feeling like, at least if we had some positive come up, Then we’d have something that we can tackle and we can go and try to address the root cause of this problem. Unfortunately in your case that’s not the case. So, yeah. So in your situation you actually tried to come off of your ME medication.
[00:05:20] Scott DeLuzio: Yes. That helps control the seizures which ended up triggering it. Triggering another large seizure. Which was unfortunate because we were all hopeful. This was a one time deal. It hap you know, happened and then, you know, maybe it’s not gonna happen again, but, Right. You know, here we are and you’re you know, four years later you’re still on medication trying to control your seizures.
[00:05:40] Scott DeLuzio: Right. So, Right. It’s unfortunate. You know, but it does happen. You said one in 26 people will have a seizure of some sort throughout their life. So if you think about. You know, think about just your neighborhood and the people who live right on your street even chance are pretty good. But they’ll be at least one of those people that’s gonna end up [00:06:00] with a seizure at some point during their life.
[00:06:01] Scott DeLuzio: You know, they may have already had it and they may not have one again, but you know, so it’s more common than I think a lot of people.
[00:06:08] Vicki DeLuzio: Expect. Yeah. And going into the military you can’t be epileptic and going into the military, so a lot of people who are like me later in life, they end up having.
[00:06:21] Vicki DeLuzio: To deal with epilepsy. So it’s a big change in their life. You know, there’s genetic people who end up from birth having epilepsy. There, There are some genetic components. I know some people who have had it since birth. And so they’ve dealt with it all their life. But then we have the people in the military who are like me, they end up with it later in life and they have to deal with this change, which is, it’s a big change.
[00:06:46] Vicki DeLuzio: And with that change comes medications. And it can Leads to some depression too. And you have to be very mindful of that. So, that’s just something to be careful.
[00:06:56] Scott DeLuzio: And it’s a lifestyle change too, to some extent because I [00:07:00] know we live here in Arizona and every state has their own different rules.
[00:07:04] Scott DeLuzio: Yep. But in Arizona, After having a seizure, you are not allowed to drive. For three months after that seizure. , other states are six months, a year. Yeah. , maybe even longer. I don’t know all of the details on all of that, but That could be a pretty significant lifestyle change if, especially if your job requires you to drive to and from work, or if you are a primary caregiver for your children and you have to pick them up from school and things like that it may require some significant adjustment to your lifestyle.
[00:07:35] Scott DeLuzio: Yes. Not to mention the things like depression and other Other issues that will arise because of that. Right. There’s social issues, right? Right there. There’s things where you know, you may not be willing to go out to a nightclub or something like that where there might be flashing lights, right?
[00:07:53] Scott DeLuzio: Or things like that. So, so you might have to adjust some of your Your lifestyle,
[00:07:57] Vicki DeLuzio: right? Yeah. I was lucky. I had a [00:08:00] lot of friends who were willing to come pick me up places and go places with me, but we were homeschooling and that was something we, I couldn’t do with the kids. So a lot of the social network I had.
[00:08:11] Vicki DeLuzio: Kind of disappeared, but I’m kind of a outgoing person, so I was able to kind of make a new outlet, but some people aren’t. I had to spend on our parents to drive us around, which kind of was like going back to being 15 years old. And then I was driving, I was riding my bike around, which, you know, Maybe that’s not the best thing if you are epileptic or if you have traumatic brain injury, but I wore my helmet.
[00:08:32] Vicki DeLuzio: So, you know, then memory issues was a big thing too. You know, people would tell me something and then five minutes later I couldn’t remember what, what was going on. And so that’s another thing with epilepsy. You, you have issues with memory and if you are trying to keep your job usually remembering things is important.
[00:08:50] Vicki DeLuzio: right? That might be a problem. And medication can make you feel really woozy. One of the medications that I take is Tomax, and it’s [00:09:00] also known as Do Dopamax because it makes you feel dopey. And it really does. It took me a while. I did feel like a stroke victim with part of my face feeling numb.
[00:09:09] Vicki DeLuzio: I had to Work on migraine control. So I had a lot of headaches. And so luckily I had good doctors who were able to help me with migraines. And so I had to work on speaking again because even reading was hard for me to read out loud to the kids. And so especially if you have a traumatic brain injury, that could be really hard to read out
[00:09:29] Scott DeLuzio: loud.
[00:09:30] Scott DeLuzio: Right. And I was just gonna say, I know I’ve talked to several people who’ve had a traumatic brain injury who. Have said something very similar to that, where very basic things like just reading something and like, they can see the words on the paper or on the screen or whatever it is, but there’s like a disconnect between what they’re seeing.
[00:09:53] Scott DeLuzio: and what their brain is telling them to say, and they’re just unable to speak the words that they’re reading. Yeah. [00:10:00] They can understand the words in most cases. Or I don’t wanna say in most cases I don’t really know, but in the cases that I’ve of people I’ve talked to , they can understand what they’re reading.
[00:10:08] Scott DeLuzio: They can read something and it says, you know, danger, do not enter. They know, Okay, I’m not gonna go in there. But if there was maybe a small child with them and they couldn’t read, They wouldn’t be able to read just even that short phrase and communicate that to the child. It’s just the way the wires in your brain, if you will, like how they all connected.
[00:10:28] Scott DeLuzio: , it’s like they get crisscrossed and they’re not working the way. They used to.
[00:10:34] Vicki DeLuzio: Yeah. I explained it to my doctor. It was like twist ties. They all became undone and then they tried to twist tie back and they were not connecting to the right places. They kind of mangled back, but they were not twist tying back and he goes, Oh, I like that explanation.
[00:10:49] Vicki DeLuzio: But it took me a while to come up with that analogy and explaining things to someone. I was talking to a stroke victim not too long ago, and he said to explain make [00:11:00] cookies to someone is extremely hard for him. He knows how to make cookies. He could make the cookies, but to explain it to someone else was really hard.
[00:11:08] Vicki DeLuzio: And a couple months after I had my seizure, I signed up to do a public speaking event. And I told you couldn’t be in the room cuz I felt like the pressure was so immense. But I was like, I’m gonna do this. And I, I. Speaking on onto my phone. I was running a blog at the time and I kept practicing over and over again and it was hard.
[00:11:27] Vicki DeLuzio: And they had one of the questions I was asked by one of the doctors was subtract seven from a hundred. And the, until you get down to zero. Until I got down to zero and I could not do it after 93. After that, I couldn’t do it, but every day in the shower I kept doing it, and then I did a hundred minus eight, a hundred minus six every single day.
[00:11:47] Vicki DeLuzio: I was doing it over and over again until I could do it because I was like, I’m going to make this happen because I was just determined and I’m also a very competitive person, so I was making [00:12:00] myself do it over and over.
[00:12:02] Scott DeLuzio: It’s like if you have a challenge and you’re okay, I can, there’s something I, I can’t do right now.
[00:12:08] Scott DeLuzio: , I know I can’t do it cause I tried it and I failed. , now it’s like, okay, well screw that. I’m gonna work at this until I can’t get it wrong. Right. And I feel like that’s almost like, like an exercise, like the way the way you might do a physical exercise where you know, if I put a, you know, a hundred pound weight in front of you, You haven’t worked out at all ever in your life.
[00:12:30] Scott DeLuzio: And you go to pick up that a hundred pound weight and you’re like, I just can’t pick it up. It’s too heavy. And then you’re like, Well, through that I’m going to be able to pick this up. And you go to the gym and you do all the right things. You eat well, you exercise, you do all the, that kind of stuff.
[00:12:44] Scott DeLuzio: Eventually you’re gonna get to the point where you can pick that up. Not only could you pick it up, you could probably pick even more than that up. Yeah. And so I think in a way it’s similar to what you were doing with The mental exercises is you were training your brain how to do that and really how to [00:13:00] think it all over again.
[00:13:01] Scott DeLuzio: Yeah. And maybe reconnecting some of the twist ties, like, like in that analogy that you’ve used that came undone and now need to get back together. Yeah. In the right place. So the more you practice, the better. Eventually you’ll end up being but it definitely wasn’t an overnight thing.
[00:13:18] Vicki DeLuzio: No. It took me probably two years to get back to about where I was and before I got sick because, I mean, I had a cold.
[00:13:26] Vicki DeLuzio: That kind of, it seems like maybe led into it. I was training for a half marathon and then when I left the hospital I could barely walk and so, when we ha when the whole seid thing happened I ran a half marathon again. Yeah. And so I was able to do that and I mean, I didn’t run fast. I mean, I really ran fast since high school, but I was able to accomplish that and so it was working towards it and not giving up just right.
[00:13:58] Vicki DeLuzio: Working working. And I [00:14:00] think. I think it’s possible. You just have to keep working towards that. But there, there are some times where I have like fears and you know, I’ve had the auras. Auras are when you have the sense that something is going to happen, that you’re going to have a seizure and everyone’s auras are different based on.
[00:14:21] Vicki DeLuzio: Your seizure status, like I have what’s called focal seizures and I see lights or I see things. Like when I was in the hospital, I thought that you were an elf and the doctor was an elf and I asked if Santa was there. And so people were like, Okay, she’s going to have a seizure.
[00:14:38] Scott DeLuzio: But to clarify, like what, what was happening there was you were seeing like Christmas lights around, like it was just, you know how the lights kind of like they got around in the line and they’re not a straight line, but that’s kind of what you are seeing in that. And so to someone whose mind isn’t working a hundred percent, Yeah. It’s easy to understand why someone would be like, It [00:15:00] looks like Christmas.
[00:15:01] Scott DeLuzio: So maybe these people are el and you know, in like full transparency here. When you first came out of, they put you in a medically induced coma. When you first came out of back coma, you couldn’t speak like you physically could. The words wouldn’t come out of your mouth, right? And. I even gave you a piece of paper to write down and you couldn’t write.
[00:15:23] Scott DeLuzio: I don’t know if we even still have the piece of paper, but it was, I saved it. Yeah, I know I saved it. I’m just not sure where that paper is, but it was really just like scribbles on the paper. There was no actual letters on there. And so I don’t know what made you think to do this, but you started using sign language and you started just signing the letters of what you wanted to say.
[00:15:45] Scott DeLuzio: And I knew that there was a problem because you knew that, I don’t know, sign language, , even though I have hearing problems, I don’t know, sign language. And yet you still decided to the communication method of choice was sign language, and I was like, Oh, [00:16:00] this is not gonna work out too well. So I quickly Googled American Sign Language, the letters on my phone, and I pulled it up. And I grabbed a piece of paper, and as you were signing, you signed the letters, W H E R E I S M Y. H U S B A N D, where is my husband? And I was like, Well, this is worse than I thought, , because I am your husband and I’m standing right here. I’m the only person in the room right now, and you’re signing this to me.
[00:16:35] Scott DeLuzio: I was like, Oh crap, what am I gonna be dealing with here? And so, you know, from my point of view, not to take anything away from what was going on with you or with anybody else who’s going through this in their own lives. But from my point of view, I was like, Oh shit, this is more serious than I thought.
[00:16:52] Scott DeLuzio: And I thought it was pretty serious at the time, like when we brought you to the hospital and. We admitted you, The doctors were asking all these sorts [00:17:00] of questions, like what kind of medications did you take? What medications or any allergies that you might have. You know, very basic things that I, like.
[00:17:09] Scott DeLuzio: I know the answers to all these questions, but at the time it was so stressful for me that I didn’t have those answers. I couldn’t communicate it to the doctor because my mind was on, on you. And how. You were gonna be and what, what was going on? I couldn’t answer those questions. Yeah.
[00:17:28] Scott DeLuzio: And so one way to mitigate all of that stuff to, to help us in the event of another future issue is on our phones. IPhones I know have it. Android phones have this setting where you can set like emergency information, where you can list medications, you can list allergies, you can. You know, emergency contact people.
[00:17:49] Scott DeLuzio: So you can list your spouse or parent or a kid or someone who you trust that you’d want to be notified in the event of an emergency. So that way should, something doesn’t have to be a seizure, it could be anything. This [00:18:00] is like such a widespread usage. You could be a car accident type of thing that way.
[00:18:04] Scott DeLuzio: The EMTs or even the nurses or the doctors at the hospital can take your phone and they have access to this On your phone’s lock screen, it says emergency something, whatever it says. They can open that up. It’ll give them all this information, what medications you take, your blood type, your your date of birth, where you live, all that stuff that you could possibly want to give to a doctor.
[00:18:27] Scott DeLuzio: It could all be right there. So we made it a point to make sure that our phones are up to date with all of that information, so that should something happen again, And I can’t remember what medications you’re allergic to or foods or other things that you might be allergic to or even what medications you’re taking.
[00:18:44] Scott DeLuzio: Yeah, I don’t have to remember that now. It’s on the phone. I can open it up and I have it there. Now, of course, it’s good if I do remember that because if you’re in a car accident, your phone is destroyed then that. Not really useful, but [00:19:00] it is good to have that sort of backup there. Yeah. Little peace of mind knowing that we have that available to us.
[00:19:05] Scott DeLuzio: So should we need it, it’s there. Yeah. So I wanna talk, I wanna switch gears a little bit. I know we talked a lot about your situation and how we’ve dealt with this stuff, but service members veterans, they’re at a higher risk of having epilepsy, having seizures. Yeah. Because of the exposures that they have to, like I said in the beginning IEDs or other bombs or explosions.
[00:19:28] Scott DeLuzio: Yep. Those could cause even if you aren’t necessarily blown up Right. Just. Concussive energy from the blast. Yeah. Could rattle your brain. Absolutely. Yeah. Gunshots in a enclosed environment, maybe even, I don’t know. I don’t, depending on maybe the caliber of the bullet, how close you are to it or, you know, even taking a shot off a helmet or something like that, that, that type of thing could happen.
[00:19:53] Scott DeLuzio: You know, TBIs are a big issue with service members and veterans. So you’ve done some research on this , what [00:20:00] is some of the stuff that’s being done for veterans with regards to seizures and epilepsy? Like either through the VA or other areas like that? So what’s being done there?
[00:20:09] Vicki DeLuzio: So there is an Epilepsy Center Of Excellence at 17 sites at the VA. And epilepsy.com actually has some information too. And the thing is, you might not see something like right away with epilepsy. It can be a couple years and then something happens. So if you have some sort of trauma, you want to let people know right away because it needs to be watched.
[00:20:32] Vicki DeLuzio: So, you wanna. Make sure that you are registering any like TBI that you have, anything that you have with the va, and let them know that you have some sort of
[00:20:43] Scott DeLuzio: issue. And I know it’s one of those things that if you were in the military, your NCOs were telling you all the time document, every single little thing, doesn’t matter how small you think it is.
[00:20:54] Scott DeLuzio: It could be a cold, it could be you know, you know, a little bump on the head and you know, it may be a little. [00:21:00] Little bra that you might have had in the barracks or something like that, or whatever, like document, hopefully not that right? But document everything because it might it might come up years later and if there’s no documentation, right?
[00:21:14] Scott DeLuzio: You know, just knowing how the VA works and, you know, after you get out of the military, they’re gonna say, Okay, well is this a service connected injury? And, you know, did this happen? During your, the time of your service, and if you have no proof of it, they’re just going to, in a lot of cases, just assume that it didn’t happen.
[00:21:33] Scott DeLuzio: So, you know, go get checked out and keep documentation. I know stuff goes in your medical file in the military, and this is for all the currently serving service members. There’s stuff that goes into your medical file, but that file could get lost, it could get misplaced. It could. Whatever. Keep a copy of everything for yourself.
[00:21:55] Scott DeLuzio: Take that folder. Copy every single piece of paper that’s in there, [00:22:00] anything new that’s about to go in there, ask for a copy get a copy, and keep it yourself in a safe place. Scan it onto your computer. If you can store it in multiple locations, Keep the physical hard copies, scanned copies, Keep it, store it in on your computer, store it on a external drive so that way if your computer crashes, you have it in a, in another location.
[00:22:19] Scott DeLuzio: Store everywhere. So that way when. Something happens down the line, you know, hopefully it doesn’t, but if it does, you have that documentation and it’s super important to have that, not just for brain related conditions, for any sort of condition, because they could lead to other things that maybe you don’t even think about right now.
[00:22:39] Scott DeLuzio: You know, it could be you know, I, when I was in the service, I. I shot of the, our rifles and ended up with ringing in my ears and I thought, Oh, okay. Well, I’ve been to loud concerts before that. This ringing will go away eventually. Well, now we’re what, 14 years later or so? And it’s still ringing to this day right now, and it [00:23:00] hasn’t gone away.
[00:23:00] Scott DeLuzio: I never even thought to go get that documented. Get this stuff documented. Go to, to get that done. So, all right. That was a little
[00:23:07] Vicki DeLuzio: changing. Yeah. And so yeah, make sure if you could put that in the show notes. The the epilepsy.va.gov
[00:23:13] Scott DeLuzio: epilepsy.va.gov. That will be in the show notes. Definitely.
[00:23:17] Vicki DeLuzio: So, and epilepsy dot com also has a lot of resources and that’s, that, that’s where they do a lot of research and a lot of stuff.
[00:23:24] Vicki DeLuzio: We could find a lot of things. Mayo and Barrow are also two hospitals that have a ton of information and they have a lot of neurological research. Done .
[00:23:35] Scott DeLuzio: Yeah. So, so, Great resources. So the va epilepsy dot, va.gov, epilepsy.com, the Mayo Clinic, Barrow they all have a lot of research and a lot of doctors who are basically, they dedicated their careers to researching this stuff.
[00:23:54] Scott DeLuzio: And while we don’t know everything about. The brain and how epilepsy works. We know a lot [00:24:00] more than we used to. Yeah. They’re not
[00:24:01] Vicki DeLuzio: gonna give you lobotomies or send you out. I always say to the kids, like, if I was growing up in like the 17 hundreds and I had seizures, they’d probably think I was some sort of witch.
[00:24:12] Vicki DeLuzio: So it’s a good thing like that Mom is not in the 17 hundreds anymore, ,
[00:24:16] Scott DeLuzio: we’ve made progress. And that’s progress. Progress, right? Progress. Yes. But I mean, when you think about these things, Nobody is out there like looking for seizures. Like how, you know, how do I come up with this illness?
[00:24:32] Scott DeLuzio: Like, it’s just one of those things that happens to people. Yeah. Either through a brain injury or an illness, or it can
[00:24:40] Vicki DeLuzio: be a side effect of some medications, unfortunately. So
[00:24:43] Scott DeLuzio: it could be something like that as well. But it’s like, It sucks because it just happens and no one is asking for this type of thing.
[00:24:49] Scott DeLuzio: It just happens. And then you end up with issues where lights or sounds even alcohol stress, lack of sleep.
[00:24:57] Vicki DeLuzio: Yeah, that’s a big one.
[00:24:59] Scott DeLuzio: Illnesses, [00:25:00] other medications even smells can trigger a seizure in people. And so you have all these issues. , and we wanted to bring this. We wanted to do this episode.
[00:25:10] Scott DeLuzio: Not only is it something that’s near and dear to us, but you know, November when this episode’s coming out Yeah. Is Epilepsy Awareness Month. Woohoo. And so we wanna kind of kick off the month with something regarding epilepsy because, you know, we’ve seen just how quickly it can affect people.
[00:25:26] Scott DeLuzio: Yeah. You know, the way it’s affected you. And we’ve known several other people who have had epilepsy and not had, but they have epilepsy and. Know, it can lead to things like depression, it can lead to Yeah. You know, isolation.
[00:25:40] Vicki DeLuzio: Very much isolation, unfortunately, especially in kids. And service members because already service members seem to be isolation is when they get back home and then this just compounds it and it shouldn’t compound it.
[00:25:53] Vicki DeLuzio: Right. You know, there’s so many treatments available. With like medications. Unfortunately sometimes you have to take [00:26:00] medication and it’s something, you know, I took medication when I first got diagnosed and the first medication was not right for me. And I did have to speak up. I’m very much a vocal person.
[00:26:10] Vicki DeLuzio: If you haven’t realized I’m vocal. And one of the medications they gave me cost hives and I had to say, No, this isn’t right. And they’re like, Oh, it’s. If it’s not right for you, speak up and you know, just say, No, this isn’t right. And then they put me on other medications and I did not have any more seizures.
[00:26:28] Vicki DeLuzio: And I had MRIs. My brain looked like it improved. So I talked with my doctors and they said, Hey, You know, if you want to try. Well, I brought it up that I wanted to try to go medication free, and unfortunately it didn’t work. I had some seizures and I said, Okay, I need to go back on the medication.
[00:26:44] Vicki DeLuzio: But there’s a lot of different medications and not every medication is right for the right, for the every person. So, there’s a lot of different kinds out there. There’s new newer medications. There’s older medications. You have to see what’s right for you. You know, if you’re on other medications, just make sure [00:27:00] that they aren’t interacting.
[00:27:01] Vicki DeLuzio: Yeah.
[00:27:02] Scott DeLuzio: And your doctor should be able to help you out with that. Yeah. Because you know, we’re not all pharmacists or doctors and you don’t know all of these things. And you can look it up. You can look up which medications you’re on and yeah. Look for interaction warnings and stuff like that. You can look that up.
[00:27:17] Scott DeLuzio: Yeah. But your doctor should be able to help you out with that. And. Just make sure that they are up to date on whatever it is that you are taking. , you know, and just like there are different medications that will work differently in each person. , the side effects will vary Yes.
[00:27:31] Scott DeLuzio: For each medication and unfortunately all the medications are gonna have some sort of side effects. You know, that it just is how it works. , and you can also look that up too. So you can look at you know, if you’re prescribed a certain medication, look, just Google it and look it up. For the side effects and see what you might be getting yourself into. . And that way, you know, if you start breaking out in a rash or something that might be a side effect. And then you’ll be like, Okay, well I can attribute it to this medicine. It’s assuming that you aren’t doing [00:28:00] anything else differently you know, with your life.
[00:28:01] Scott DeLuzio: So, There’s a lot of different side effects, a lot of different medications. So if you try one and it’s like, that’s not gonna work for me because I’m not gonna live with a rash throughout, you know, from the end of my life. That would just be a miserable thing to do. Just, you know, talk to your doctor and they’ll hook you up with something else.
[00:28:18] Scott DeLuzio: Let’s see. So I guess another thing, especially for the people who are living with someone who has a seizure, is to talk about like, what do you do when someone is having a seizure? And over time, if you’re dealing with someone who’s at epileptic, eventually gonna figure out, Okay, now I know what to do.
[00:28:39] Scott DeLuzio: , because this is something that you’re used to. And like you said, there are a lot of different types of seizures. So the what to do. For each seizure is going to be different. Sometimes you may not have to do anything, right? Sometimes you may just need to just sit with a person, make sure that they’re safe until they come out of the seizure, right?
[00:28:56] Scott DeLuzio: Sometimes you may have to do something [00:29:00] that could potentially save that person’s life, because I know When you had your most recent seizure it was, you had a situation where it was almost like almost like foaming at the mouth. Like you might see I’m charming. I know. I’m like sharing this with everybody really selling me.
[00:29:16] Scott DeLuzio: I know. Well, I gotta keep it to me. So, So I mean, like that stuff is, unfortunately, it’s something that you would choke on, right? And so, absolute. So I know a lot of us being service members who are listening to this podcast or veterans, you know, we’ve learned some of the the basic first aid.
[00:29:32] Scott DeLuzio: Type things that, that you would do if if dealing with someone in a situation like that but, you know, try to roll the person on their side if you can. Right. In, in this most recent seizure that you had, you were sitting on a chair in our living room. A recliner, got a kind of chair and I literally dragged you walking the chair and brought you down onto the floor and turned you over onto your side.
[00:29:54] Scott DeLuzio: . So that way should that start happening, you wouldn’t choke on whatever that is, that it ends up there. [00:30:00] Right. But That’s like one thing that you might need to do and you, And don’t put anything into your mouth. Yeah, you said that earlier. Don’t put anything in people’s mouth. A lot of times people are like, Oh, you gotta put a wooden spoon in their mouth so that they don’t bite their tongue.
[00:30:11] Scott DeLuzio: No. The problem is when someone is having a seizure, they’re, every muscle in their body is clenched at its tightest. So tense. So tense. To the point where if I wanted to put something in your mouth, I wouldn’t be able to open your jaw. Okay. And even if I did, like if my fingers were in the way, like I’d be afraid that you would bite my finger like that.
[00:30:36] Scott DeLuzio: It’s that tense.
[00:30:37] Vicki DeLuzio: sore for days after. It was like the most, it must have been the most intense workout because for days after, it felt like I had been like ripped. Yeah. It was a very good workout. . Well, and,
[00:30:48] Scott DeLuzio: and so as an example, just a few. Weeks ago, there was a football player for the Miami Dolphins who had a serious head injury blow to the [00:31:00] head.
[00:31:00] Scott DeLuzio: Actually happened I think one after another. Like, one week he had an injury to his head. . And he got up and he was stumbling around. He could barely walk. Yeah. And then the second week he got hit in the head and almost immediately you saw his fingers. Fingers were. Crunched up. I made a joke and it’s not really funny, but it was like, it almost looked like he was trying to make a gang sign that like no one saw, no one really knew like what that gang was or anything like that but it’s like it.
[00:31:28] Scott DeLuzio: He had no control over it. It just his brain, and I’m not saying he had a seizure. I’m not a doctor. I don’t know exactly what happened. It was some neurological thing that happened right in his brain, but his hands just kind of seized up. Yeah. And I’m sure other parts of his body did too. We maybe just couldn’t see it.
[00:31:42] Scott DeLuzio: All right. But if you were to try to straighten out his fingers at that point, you probably wouldn’t be able to. Cause it was just so tense. And he’s probably
[00:31:50] Vicki DeLuzio: a very strong dude.
[00:31:51] Scott DeLuzio: I’m sure being a quarterback his hands and his arms and everything like that are probably super strong. So, you know, I wouldn’t.
[00:31:58] Scott DeLuzio: Suggest trying to to do that, just [00:32:00] like let it happen I would think is the best way to do it. Yeah.
[00:32:03] Vicki DeLuzio: I did have like mornings and people who have had multiple seizures. Like I did have a morning that it was going, it was coming and so I did take my rescue medication that day, but it just, It wasn’t enough.
[00:32:15] Vicki DeLuzio: . So, and people who are epileptic, they might have a warning that it’s coming over in Aura as it’s medically called. So, and it could be like an intense fear. A lot of people will say it’s an intense fear or they’ll feel sick to their stomach. And unfortunately with people who are in the military, and this is me projecting a little bit, Coupled with PTSD that might be even more intense.
[00:32:39] Vicki DeLuzio: . And so, I just feel so bad, like, I will have this intense fear that something horrible is going to happen and that could be mistaken for a PTSD sign to. And so, that’s something you probably wanna talk with. A therapist or a doctor about like how to tell the differences between those.
[00:32:56] Vicki DeLuzio: Right.
[00:32:57] Scott DeLuzio: And you were talking about to me. , you know, before we were recording[00:33:00] , you were talking about how there have been times when you’ve. You’ve had a fear over inanimate objects. , like, yeah. The nightstand next to our bed. Or the shampoo bottle or some, something that is completely harmless.
[00:33:15] Scott DeLuzio: Innocuous. Completely. Yeah. Like nothing. Is gonna happen with those things. It’s not like you’re staring down the barrel of a gun or something like that. You have no reason to be fearful of these things, but you still just have this fear. And so that is, you know, a good example of what would. Be classified as something that could be that aura leading up to a seizure.
[00:33:38] Scott DeLuzio: Yeah. The other thing too that I, I wanted to mention, especially talking about veterans and service members , who might be experiencing some of this stuff is the use of service dogs. , because Yeah, absolutely. I know. Myself and a lot of other veterans, we love dogs. I mean, it just
[00:33:55] Scott DeLuzio: We got a soft spot in our heart for dogs and you know, they are [00:34:00] truly man’s best friend. They will do whatever to make you happy, safe, what, whatever. And so, you know, people do have service dogs who can detect seizures. When you have a dog like that, it can help you, especially if you have a job where you need to be up maybe up on ladders, or before you get up on that ladder, maybe the dog is noticing that you’re about to have a seizure.
[00:34:24] Scott DeLuzio: It’s like, okay, well I’m not gonna go up on that ladder right now because I don’t want to have a seizure and fall off. Sure. Or if you drive a lot for your job if you have a dog in the car with. And it detects that you’re about to have a seizure you can pull over, get to a safe space so that way you’re not having a seizure while you’re behind the wheel driving.
[00:34:41] Scott DeLuzio: Right. You know, on the highway or anywhere really for that matter. Yep. So service dogs can be incredibly helpful with detecting a seizure. But I know you, you have a story of our dog who was. Trained for this whatsoever. It was just a dog that we lived with for, at that point.
[00:34:57] Scott DeLuzio: It was like nine years, I think. We lived with her all [00:35:00] this time and she got to know us and know our body chemistry and our smells and all this kind of stuff that, that goes along with it. And I’ll let you
[00:35:08] Vicki DeLuzio: talk about it. Yeah. She just laid down next to me and she just was Okay, you know, You need to like be calm and she just knew.
[00:35:16] Vicki DeLuzio: And that was Roxy. And she just knew something was up and I knew, okay, she’s laying down next to me, There’s something going on. And she passed away in, in 2020. And then Our new puppies in in May when I had our seizure liberty she kind of started acting funny when I started feeling off and she started laying down next to me.
[00:35:36] Vicki DeLuzio: Right. So I think like they already consent if something’s going on and they’re in their puppies, but they can, I think they’re already starting to understand what’s going on and
[00:35:46] Scott DeLuzio: Right. And it’s pretty. It was described to me a while ago and I’ll try to come up the episode that this was discussed in.
[00:35:53] Scott DeLuzio: But we had another episode on this podcast couple years ago, and we talked about service dogs and[00:36:00] not just with regards to seizures, but you know how they can help for things like PTSD and all sorts of other things, but with the service dogs the way it works is like, from my understanding and my recollection of this is our bodies are given off certain smells and dogs have way better smells than we’ll ever have a sense of smell, I should say.
[00:36:19] Scott DeLuzio: And they can detect those changes in your body chemistry. Like the thing that’s about to trigger that seizure will have a different smell and it triggers something in the dog that says, Hey this is different. This is not supposed to be happening. So what’s going on? And they get concerned.
[00:36:38] Scott DeLuzio: Yeah, like, You know, like, like with anything, if you were to look at someone and they had this like green gross growth coming outta their face, you’d be a little concerned about that person. You’d be like, Oh, like, can we get you some help? Can we take you to the doctor and get you some help?
[00:36:54] Scott DeLuzio: Right. And so that’s the way I think of it with the dog is a dog will sense [00:37:00] something that’s not green and gross, but smells different. And may, maybe it smells gross. I don’t know. Maybe it smells. Off to them or whatever, and they’re like, Okay, well this isn’t right and this person needs help. So yeah, you know, there’s only so much a dog can do as far as helping like, Dog’s not gonna put you in the back of the car and drive you to the hospital but they can warn you that the seizure’s about to happen.
[00:37:26] Scott DeLuzio: So that way you can get yourself to a safe place. You can lie down on the floor or, you know, get some pillows, you know, around you. So that way you’re not gonna hit your head on a hard floor. For example, if you’re at a tile floor, wood floor or something like that you know, you can get so, Soft around you, so that way knowing that the seizure is about to come, you can get yourself to a safe place.
[00:37:47] Scott DeLuzio: So I think you know, service dogs are incredibly useful and I’m sure there are organizations out there who train. Service dogs for seizures. I don’t know any particularly off the top of my head. But I’ll [00:38:00] try to look up a couple of those and add those to the show notes as well. But you know, that’s something that you can look into as well.
[00:38:05] Scott DeLuzio: Well, usually
[00:38:05] Vicki DeLuzio: they do like to have the dog that has been with the family or a dog that has been already incorporated into family, from what I understand. You know, they don’t wanna have a dog that’s just. The, you buy that a dog from them, they want
[00:38:19] Scott DeLuzio: An off the shelf kind of dog. They want you.
[00:38:22] Scott DeLuzio: Train your dog. Is what I believe I understand as well. And yeah. And the nice thing is, from my understanding is any dog can be a service dog as long as they are able to perform a specific function for the person that they’re serving, then they could be considered a service dog.
[00:38:38] Scott DeLuzio: So it doesn’t have to be, you know, certain breed or certain type of dog. It could be. Dog. Really, as long as they’re capable of performing those functions. Right. Right. So, so that’s I think an important thing to, to think about too is you know, how you deal with these things because in some cases, It may not go away.
[00:38:57] Scott DeLuzio: It may be something that you have to manage and [00:39:00] live with for the rest of your life. And so, you know, there’s medications that help manage these things. Service dogs you know, modifying your lifestyle. There’s a lot of things that go into it. Yeah. But there are also resources available so you don’t have to figure all of this stuff out on your own and you can get help from various.
[00:39:21] Scott DeLuzio: Resources that are available, which again, I’ll try to link to as many of them as I can in the show notes. Yeah,
[00:39:26] Vicki DeLuzio: Yeah. So, absolutely. And, you know, take it one step at a time. You know, don’t give up. Try to find some resources. There’s a. Groups online too, that are available. That’s been helpful for me navigating this.
[00:39:39] Vicki DeLuzio: There’s a lot of people who get epilepsy later in life, you know? So we’re not alone that you know, it does spring up on people, you know, in their thirties, in their forties, like all of a sudden, oh goodness, I’m just dealing with this neurological disorder. So it’s, you’re not alone, that you’re just oops.
[00:39:55] Vicki DeLuzio: One day this happened. You know, It’s not a punishment, it’s. Something [00:40:00] that happens and you know, sometimes you might feel like, what the heck did I do to deserve this? You know, it’s it sometimes can’t feel like it sucks, but you know, you get a new lease on life and you figure out, okay one step at a time.
[00:40:12] Vicki DeLuzio: You always say, you know, how do you eat an elephant? One by at a time,
[00:40:15] Scott DeLuzio: one at a time. Yeah. That’s how you do it it’s gonna suck because it, it’s a big elephant. It’s a big elephant. But you know, But you can’t do, you can’t chew off the whole thing. So you gotta take things. One step at a time, try to eliminate possibilities.
[00:40:29] Scott DeLuzio: So if there’s environmental things around you know, try to see if removing some of those environmental things that, you know, maybe a toxic exposure to certain things. Yeah. Maybe could have triggered a seizure in you. So, so you can try. Eliminate some of those things as possibilities. So, there’s a lot of things, but I think importantly, talk to a doctor who knows a lot about this.
[00:40:48] Scott DeLuzio: Neither Vicki or I are doctors. We’re not no experts in this, even though we’ve dealt with this for the last few years. Yeah. And had to live with it. But by know means are we [00:41:00] experts. We know a lot. What you’re going through. Yeah. . But we couldn’t possibly talk to what everybody is going through.
[00:41:06] Scott DeLuzio: So it’s different for everybody. Yeah. Again, it’s different for everybody. The doctors are gonna be your best bet. If you’re enrolled in VA healthcare, if you have VA benefits that you are able to do that with, you can make an appointment with your va local VA and try to get checked out for that and see if they can make a referral to a neurologist.
[00:41:24] Scott DeLuzio: If you’re not enrolled in VA healthcare, you mentioned Mayo Clinic has been great for you. Barrow was another one that was recommended to you. We had, we don’t have any personal experience with that, but they’re usually pretty good as well with regards to epilepsy. So, you know, check out.
[00:41:38] Scott DeLuzio: Those types of people those types of facilities in your area if you don’t have access to you know, VA or other local things like that. So, anything else that you want to add?
[00:41:47] Vicki DeLuzio: No,
[00:41:47] Scott DeLuzio: I think that’s about it. Okay. Well, sounds good. So thank you everybody for taking the time to listen.
[00:41:53] Scott DeLuzio: Hopefully this was helpful educational for you as we kick off Epilepsy Awareness month. But you know, we wanted to make [00:42:00] sure that everyone. Some awareness about what epilepsy is, what seizures are, how they can come up in, in different ways in people and that there’s no one size fits all solution to any of this.
[00:42:12] Scott DeLuzio: So, you know, if you need additional resources feel free to reach out If it’s not in the show notes, if you’re looking for something out else, feel free to reach out and we will. Do our best to get you the right resources or you know, check out your local VA as well.
[00:42:26] Scott DeLuzio: They may be able help.
[00:42:30] Scott DeLuzio: Thanks for listening to the Drive On Podcast. If you want to support the show, please check out Scott’s book, Surviving Son on Amazon. All of the sales from that book. Go directly back into this podcast and work to help veterans in need. You can also follow the Drive On Podcast on Instagram, Facebook, Twitter, LinkedIn, YouTube, and wherever you listen to podcasts.
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