The Unseen Struggles Behind Seizures

What’s up, everybody? I’m bringing you an unreleased episode straight from the vault—recorded a few months back while I was under the weather, so bear with me on the coughing.

Epilepsy is more than just seizures—it’s a rollercoaster of challenges, uncertainty, and constant adjustments. In this personal episode, I, Anthony, open up and take you inside my world, sharing an honest and unfiltered look at what it’s really like living with this complex and often misunderstood condition. From the warning signs that signal a seizure’s coming to the ways I manage the tough side effects of necessary medications, this is me.

Chapters

• 0:24 Anthony Discusses Epilepsy and Seizures
• 18:54 Facts and Personal Experiences of Epilepsy
• 40:09 Handling Generalized Tonic-Clonic Seizures

Transcript

Speaker 1: 0:24

What's up everybody. It's your boy, anthony. Welcome to another edition of Spade, the podcast. What's going on, y'all? So I'm doing something a little different this time. Okay, I'm not going to have a panel this time, it's just going to be me. Yeah, boy, like this is the first time I've done this, so I'm nervous, like normally. I'm with people, so I'm by myself, like nobody's here, I'm not mediating or anything like that. So it's kind of weird, but it's all good though. So I decided that this time I wanted to actually do. I'm actually going to start doing some episodes by myself now, and I'm going to still do some. You know I'm still going to do panel episodes as well, but I'm also going to incorporate some stuff by myself. That way y'all can get to know me more. You know what I'm saying Because I'm always on the panel and I'm mediating, so you hear my guests and stuff, but you never hear from me. So it's time that I'm a little more personable. You know what I'm saying.

Speaker 1: 1:44

So this particular episode, I'm actually going to talk about a subject that I've actually discussed my first season that maybe some of you other subscribers, my newer subscribers don't know about. I don't know if you guys have fully listened to my first season, but in 2004, I was diagnosed with epilepsy and so with that I shared my journey on, like how I was diagnosed. I had my mom on the episode and she recalled some of the events that I cannot remember, because with epilepsy I do suffer from short-term memory lossness because of the medication and I take in everything like that. So recalling certain events is kind of difficult for me. But sorry, this particular episode, I'm not going to necessarily do that again, but I'm going to just kind of take a different spin on it, because I realize that I haven't talked about epilepsy like that throughout my whole parkas. I've only talked about it one time. And also I haven't talked about PTSD either, which is crazy because those are the two letters in spade, like what. But PTSD does definitely come in like ASAP, because that's long overdue. But yeah, with this episode, yeah, I am going to go ahead and dive right on into this. So we are going to get started. So be right back, all right.

Speaker 1: 4:04

So when people hear about, when people hear the term epilepsy, some people are like, okay, what is epilepsy? What does that mean? Epilepsy is another term for seizures, so just want to get y'all get that clear Seizures is a. It's a condition. A condition I mean All right. So some people don't know the term. What is epilepsy? Epilepsy is the I guess you could say the professional term for seizure.

Speaker 1: 5:52

So seizure is a sudden, uncontrolled burst of electrical activity within the brain and so with the seizure it can cause changes within your behavior. It can cause like movements, feelings, levels of consciousness, and your symptoms of a seizure it may vary. So, for example, my symptoms are I know when I'm about to have a seizure because I have a aura. You may hear that term with individuals that have seizures. They may say they have an aura or a feeling, and you're probably like okay, what does the aura mean? It's hard to explain. I can't tell you what that is. It's to me and this can be different for any and everybody and aura feels like a sensation of kind of a how can I put it energy. So I feel, when I know I'm about to have a seizure, I feel it's like a rush of I don't want to say excitement, but the feeling is that, but it's fear. So it's that plus fear and it's just that type of energy and I feel it and it's like I that's when I know I'm about to have it and I have seconds to act to stop it. To stop it, what I would use is to I would have a emergency medication and my doctor sorry if I'm coughing y'all, I am still getting over this cough.

Speaker 1: 8:42

I got sick in the month of January, I got the flu and I still have this lingering cough. So and here it is, in March. So excuse me if I'm coughing, I'm sorry. A lot of people they dealt with this, whatever this lingering flu virus, covid crap is, but new verstrand or whatever. Anyway, back to my story. So I have seconds to react.

Speaker 1: 9:15

So I have emergency medication. It's Ativan. Ativan, when I normally take it, I take it. It normally calms that feeling and it'll knock me out. That's. My doctor prescribed it for me and I had that prescription for years because I mean, I only use it for emergencies. So now my current neurologist she actually gave me a type of medication that I would. It's a spray that I would use. So this would it stops. It's faster because you spray it with men and nostrils and it travels faster, instead of a pill, because a pill, when you're swallowing it, it's slower to react within the body. Anyway, yeah, so again, I have seconds to react.

Speaker 1: 10:20

Sometimes I notice that when I'm waiting because my doctor's right it takes a while for the pill to kick in. So when I'm waiting for that pill to kick in, after I take it, I have to. I trained myself to just take slow breaths and try and just breathe and try and just maneuver that energy as best as I can, because the seizure I feel, it's literally a burst of energy that if I hold, I'm holding on to it, but if I let it go, that is the energy and it explodes within my body. That's what it feels like. It's like an explosion. If it's explosion, that's the grand mal. Seizure, that's as best as I can explain it. And I do everything in my power to hold it. And when I'm breathing, I breathe in and out slow, while holding it and trying to remain calm as best as I can and then also letting the medication take. Take, what's the word I'm looking for, so it can take an effect. That's what I'm trying to say.

Speaker 1: 11:56

So I've had times where it actually happened. I don't know if I said this enough in my episode on the journey. I don't think it did, because that was when I did that. I was in 2020. So, no, I did not, but I actually had to stop an episode while I was driving. Yeah, crazy, absolutely crazy.

Speaker 1: 12:32

So literally I was heading to work. This is when I worked at was in federal, at DOD. So I was driving to work and I'm like I left home and I kind of felt I was like, okay, I'm okay, I must be tired or something, because the night before I went to bed, okay, I took my medicine on time, because normally when you have seizures, it's either lack for me, lack of sleep I don't take my medicine on time, that's the thing but I did everything appropriately or stress, but everything is appropriately. So I don't know what's wrong. But I was driving and I'm like, okay, I'm okay, so I'm still driving. And this was when I lived.

Speaker 1: 13:32

I was in Largo and I worked in close to the DC-ish area. So from my house to DC-ish, it's about like kind of like a 30, 40 minute drive or whatever. So I'm driving, 20 minutes goes by and I'm like, oh crap, I feel it, I know. I'm like, oh crap, I don't feel good, I can't turn around, I can't go home, and I'm like, okay, if I get to the base, then I can get to the base. I can let the police know like I'm about to have a seizure. I need help ASAP. I'm like halfway to the base, so I can't pull over anything. So I'm like driving. Mind you, I feel the energy, so I'm doing everything in my power to hold it.

Speaker 1: 14:41

Mind you, this is the most. This is the wrong thing you can do. Anybody that has epilepsy or anything like that. If you feel you better have a seizure, pull over. Don't do what I did. Do that at all. Don't do that, because that could have been horrific. I could end up having a seizure while driving, could have my car, could have oh my God, I could have hit somebody. I could not be here right now, could have flipped, could have died. Somebody else could have died. That could have been a horrific scene. But yeah, if whoever, if you're listening to this if you have a seizure, if you feel like you're about to have a seizure, you pull over, call 911 and let them know, have the seizure in the car and then, yeah, but while you're on the side of the road, and always make sure you have your emergency medical alert bracelet on or any type of emergency jewelry on. That way, people will know that you are epilepting. They don't think that you're tripping off some type of drugs or something like that, that way they can see.

Speaker 1: 16:07

But anyway, back to my story. So I'm driving and I'm holding on, holding off the seizure. I'm holding off this energy, like literally it's inside me If I don't hold it off. And I know this. I'm trying to focus on the road. I'm trying to hold off the energy. I got several things in my head trying to contend with traffic on top of that, so, and then on top of that, I get like I was starting to get a little lightheaded in the midst of driving. So all of these things are just happening all at once and it was insane. I'm telling you all it was insane.

Speaker 1: 16:52

So I finally make it to the base and they checked I was behind, I think it was like a car or something. They get to me and I said I'm about to have a seizure, I need your help ASAP, help me. So they tell me to pull over. I showed them my badge and everything, and that's when I just started. I started to shake and everything right then and there, but I was, I started crying and everything like that, because I know when I start crying and stuff, and I know what's about to happen. So I call my boss or trainer, or something I think they well, they either call out, I can't remember, but anyway I think my trainer came up, they was trying to get to me and I ended up going to the emergency room, but luckily I did not have that grand mal seizure, it was just a little excuse me, just a little mini seizures, but I did not black out or anything like that. But yeah, that could have been catastrophic. But yeah, there was a time, though, that I was alone and I was about to have a seizure, and this was I was I'm trying to say it was several times I was about to have seizures and one time I ended up. I was at home I can't remember. This was either in South, I want to say just in South Carolina and I was about to have a seizure and I ended up falling down the stairs trying to get, trying to rush to somebody, yeah, and I fell on the stairs. But yeah, it's been some crazy, crazy stories.

Speaker 1: 18:54

I'm telling you crazy stories, but I want to read some facts to you guys. So, according to the Epilepsy Foundation, did you guys know that African-Americans are more likely to be diagnosed with epilepsy than Caucasians. Did y'all know that? Because I didn't. I didn't know that until I just pulled this fact up. And we are more likely to experience medical emergencies related to epilepsy. So that's kind of a telling stat. You know what I'm saying and according to the US Census Bureau and Centers for Disease Control and Prevention, 578,000 African-Americans have epilepsy or a seizure disorder and over 25,000 African-Americans are diagnosed with seizures or epilepsy each year. And, in fact, african-americans are more likely to be diagnosed with epilepsy more than white Americans. Like I just said, this is due to several contributing factors, such as strokes. So and it's an estimated, 25,000 African-Americans are diagnosed with a new case of epilepsy each year in the US. So education is definitely the key to changing the attitudes and encouraging people in reference to individuals living with epilepsy and how to treat some of the deaths living with epilepsy, as far as with proper care.

Speaker 1: 21:04

Now, the one thing that really like irritates the heck out of me and I'm going to say this upfront is when people play with the lights, like flickering the lights back and forth and trying to be funny about that. That is my biggest pet peeve, because oh and that, and then people fake and like they have seizures, like doing this whole. I hate that. That is the most offensive thing you can do to somebody that has epilepsy. That's the most offensive thing that you can do. That. And then flickering lights, because one some of us are, we're photosensitive and so flickering lights can cause seizures With me. I have extreme anxiety with flashing lights and stuff because I just don't know if that's a trigger for me having a seizure. I don't want to find out. So when I have, when there's flickering lights and all this stuff, that is like that's extreme anxiety with me. So no, don't do that. So let's talk about some facts.

Speaker 1: 22:37

On the mental health side, we have epilepsy. So, yeah, we experienced anxiety, we experienced depression and anxiety is one of a main problem because we're always feeling anxious Me especially. I'm always feeling anxious. Well, not always, but I was. I did feel anxious because it's a thing of like, especially when I would sleep. I don't know if other people that have epilepsy they have a use of. I used to have issues doing this sleep.

Speaker 1: 23:14

So I have a cutoff time where I have to be in the bed by maximum 3.30, 4 o'clock am the max. If I'm not sleep, sleep by 4 am I am going to have a seizure. There's no if ands buts about it. I will have a seizure and it's gonna be a grand mal seizure. So yeah, I always like if, for some reason, if I am having trouble sleeping and it gets to that point, my heart starts racing and I'm like, oh my god, what is going on? Why can't I sleep? Oh my god, I'm gonna have a seizure. Oh my god, and all these thoughts just start racing through your head, yep. So that's a horrific feeling because then then like if, if I'm in that problem, that means I'm about to just cause it on myself instead of just trying to just breathe, focus and then just go to sleep.

Speaker 1: 24:27

So that's what I've learned to not do is not to just constantly look at the time, it's just to actually one go to bed at a reasonable time and I stay up super late because I wish I could. You know, I really sometimes I really do wish I could just go out, you know, with some of my friends and whatnot and do like they do the help all night and stuff. But I know my body, I can't do that. So that's why I tell people they look, y'all go on, have fun Me, I gotta be back at a certain time. I got to be in bed at a certain time. Because I'm not in bed by a certain time, then, yeah, that ain't gonna be good for none of us. I ain't trying to end up in a hospital because I mean, when you have a seizure, you know you, some people in a seizure they stop breathing. So that's just. It's always kind of a kind of a fear. I want to say that I have to ask my mom this I think I have stopped breathing when I have had a grandma seizure. I think I did.

Speaker 1: 25:48

When I had those, when I had those grandma seizures when I was touring at USC, oh, that was a horrible, horrible day too. Yeah, when I was in a college tour at US University, south Carolina, everything was going fine. I got accepted to the University of South Carolina, everything was fine, and then all of a sudden have a grandma seizure in the college tour. Who does that? This guy? You know I was pissed, I was hurt, I was mad, because then that changed my whole entire college career, that, yeah, I had to not go to school at USC. Yeah, that was. That's a long story, that's for another time, but yeah, that was, that was crazy and that brought on some depression too. But yeah that I ended up having a seizure during the college tour, anyway. But back to back to what I was saying. So this is another fact around 16% of adults actually in London has some symptoms of depression because of dealing with epilepsy.

Speaker 1: 27:26

So links between epilepsy and their mood. You do have some mood effects but that is because, like, taking different types of medications affects your mood. So when I was on Keppra Keppra, they changed me from deprecote to Keppra. Keppra was a evil, evil medication for me. I got so evil and so mean. My whole personality was not this bubbly thing that y'all know me for, I was evil. My mom can tell you I was evil Like I was a whole another person and it was bad. Like some people do fine with Keppra Me, I was not that person and they had to get me off that medication ASAP because I turned into. It was like a Dr Jekyll, mr Hyde, it was horrible. But yeah, medications definitely will change moods, but some things that you can do that make sure you do.

Speaker 1: 28:59

As far as with to help somebody during an episode. Do not and I repeat, do not put a spoon in anybody's mouth. I'm gonna read to you the do's and don'ts. I'm gonna pull it up. See, y'all can do. Not try and stop movements or hold us down. We become very strong when we have an incision, like we become very strong. So don't put anything in our mouth, don't try and shift us unless we are near something and it's unsafe, like stairs or water or something like that. Again, do not put anything in our mouth, because we're not gonna swallow our tongue. That's a myth. We're not gonna do it. Just guide us from danger, remove harmful objects around us and make sure you're cushioning our head and then stay with us until we have recovered and call 911.

Speaker 1: 30:34

Biggest thing just let it happen. Let it happen and once it's happened, call 911 and then it's gonna be a horrific sight to see. I don't ever want to see myself have one because from what I've been told, it's not a good sight to see. So I don't want to see myself having one. But, yeah, just be prepared to see something that you know you don't want to see. Then, when that person comes or comes about, they're going to be very tired because when we have a seizure, when we're done, we have used up all of our energy. Like energy, we were tired, we have nothing left, so there's nothing. So most of the time I'm either, when I wake up, I don't remember. I don't remember what happened, I just know that I'm in the hospital when I wake up. So that's your best bet is to call the ambulance and then, yeah, that's my suggestion, but I can't speak for everybody's. Other people deal with different types of their situations accordingly, yeah, so again, just, whatever you do, do not put anything in somebody's mouth. Now, if you have questions, feel free to message me, reach out and everything I got you.

Speaker 1: 32:24

I want to talk about the different types of seizures and I want to make sure that I am pronouncing these correctly. So there are, there's are there's the generalized seizures, the focal seizures, and then there's unknown seizures. Generalized seizures people with this type epilepsy. They're affected on the both left and right sides of the brain. Additionally, these seizures may be either motor, which involves physical movement, or non motor, which do not give me just a second. So with generalized seizures, absent seizures sometimes can call sometimes called petite mouth seizures, can cause rapid blinking or a few seconds of staring into space, tonic, chronic seizures, which is a part of that. Generalized seizures is also called grand mal seizures and can make a person cry out, lose consciousness, fall to the ground, have muscle jerks or spasms. This may feel. The person may feel tired after a tonic chronic seizure. So grandma seizures, also called a tonic chronic seizure. Just remember that Now your focal seizures are located in just one area of the brain.

Speaker 1: 34:14

These seizures are also called partial seizures. Simple focal seizures affect a small part of the brain. This is on the CDC dot gov If you want to get more information for this. This simple focal seizures affect a small part of the brain. These seizures can cause switching or change in sensations, such as strange or smell. You have your complex. Complex focal seizures can make a person with epilepsy confused or days. The person will be unable to respond to questions or direction for up to a few minutes.

Speaker 1: 34:52

Then you also have your secondary generalized seizures, which begins in one part of the brain but then spreads to both sides of the brain. In other words, the person first has a focal seizure followed by a generalized seizure. So where's that describes generalized seizures? Again, tonic muscles in the body becomes stiff. A tonic muscles in the body relax Myoclonic. The short jerking and parts of the body. Chronic periods of shaking or jerking parts of on the body and again call 911 if the seizure lasts more than five minutes. Now all seizures are emergencies. So just remember that now all seizures are emergencies. Keep track of how long the seizures last Call 911 if a seizure lasts more than five minutes or if the person gets injured during the seizure. So my seizures.

Speaker 1: 35:56

I was diagnosed with JMA, which is juvenile myoclonic. I have jerking of the. I have jerking, so my body they jerk. So my hand, my body would jerk, my hand jerks, leg would jerk or whatever, but my. That's what. I was initially diagnosed with my neurologist back in South Carolina and did not always agree with that, but she agreed. I forgot which one she said that I had. It's been so long I can't remember. If you want to know you can ask my mom or, better yet, I think she said it. Go back to my journey. She said in the episode but yeah, this is see, this is why you have a. Have a good reference Because, again, y'all know my short term memory, but anyway, so yeah, I have tonic, I have tonic seizures.

Speaker 1: 37:16

So when my seizures were bad back in during my early part of the years, it was talks that I may have had surgery. So that was the thing of where they was either going to implant something in my arm or they was going to ask at the brain surgery. So imagine hearing that that was rather difficult for me. So, yeah, I was like I'm not having brain surgery because the wrong thing where you snipped something wrong, that means I would not be able to walk properly or, you know, talk properly, remember just, things can go horrifically wrong. So, but now, with the dosage of medication I'm on now I'm fine. So still have you know, challenges of what night every now and again, but overall I'm fine. I haven't had any episodes and anything like that. So all is well with me. Yeah, so I thank you guys for listening to my journey. I'm going to say a journey part too, so, so, yeah, I can actually get a deeper view into what it is to be me.

Speaker 1: 38:54

Oh, before I go, so learning seizure, first aid, because about one out of 10 people with this I'm still on CDC dot gov, so if you want to get this information, just go on CDC dot gov, and I'm reading all of this off their website so about one in 10 people may have a seizure during their lifetime. So what do you do? Of course you call. Do you call 911? Now I'll see, just require you to call 911, but If it's seizure last longer than five minutes that we you would need to call them. Person that has another seizure soon after than the first one. When I first got diagnosed I had six in a row. So naturally, yes, if the seizure happens in water, of course call 911. Person is hurt call 911. Stay with them until the seizure ends. Come for the person and speak to them calmly. Check to see if the person is wearing a medical bracelet or any other emergency information. That's our tele-invited that have seizures. Make sure you have your emergency bracelets.

Speaker 1: 40:09

He's a first day for generalized tonic-clonic grandma seizures.

Speaker 1: 40:17

When most people think of a seizure, they think of generalized tonic-clonic seizure and things that you can do to help somebody who's having that type of seizure. Ease them to the floor, turn that person gently onto one side, clear the area around the person of any heart sharp objects put in the, put something soft and flat like a folded jacket under their head, removed eyeglasses, loosened ties or anything around their neck and then, of course, time the seizure, called 911 if the seizure lasts long. And again, we already went over what not to do by my side again. Do not hold the person down, don't put anything in the person's mouth again. Do not try to give mouth to mouth CPR people use to start breathing again on their own after a seizure and do not offer the person water food until he or she is fully alert. That's another thing. So I thank you guys for tuning in and yeah, so I like these one-on-ones. So the next time we're gonna be talking about PTSD yeah, because I ain't done that one yet. But on that note, I'll see y'all later. Bye.