Transcription:
Epilepsy Patient Testimony

Announcer: This is Hello Healthy, a Dignity Health podcast.

Scott Webb: Epilepsy is a neurological and physical condition that affects the brain and body. It also affects the ability of people to live their lives without worry. I'm Scott Webb. And on this special episode of Hello Healthy, I'm joined by epilepsy warrior, Megyn Ashley; her father, James; and epileptologist Dr. Hari Kuhni Veedu. They're here to share Megyn's journey from her normal childhood to suffering her first seizure, being diagnosed with epilepsy and today, being seizure-free thanks to the efforts of Dr. Veedu.

So thanks everybody for being here. I'm going to start with you, Megyn. How old are you? What do you do for a living? And mainly what was life like before epilepsy?

Megyn Ashley: So I am 21 years old. I'm currently working two jobs. I work at a McDonald's and at an elementary school as a daycare aid. I'm also going to school to be a teacher and life before all of this just felt like a normal teenage life, going to high school, hanging out with my friends. I was playing soccer. It felt like a normal teenage life and then took a big turn. My junior year of high school is when it all got hard.

Scott Webb: Yeah, it does sound like a pretty normal life. And then as you say, things got hard and that's presumably when Dr. Veedu enters the picture. So doctor, tell us about yourself, your background and how you met Megyn.

Dr. Hari Kuhni Veedu: Hi. I'm Hari Veedu. I'm an epilepsy specialist at Bakersfield, and I'm primarily working at the Dignity Health System, and also, you know, working at other hospitals in the city as well. I saw Megyn a couple of years ago, and then she was referred to me with the history of, um, you know, the grand mal seizures, and also, she has, um, you know, the, uh, rapid jerking off the arms, we call myoclonic jacks.

And by that time, she was already seen at UCLA. And they diagnosed that she has epilepsy syndrome called juvenile myoclonic epilepsy. And she was already started on, uh, two antiseizure medication. At that time, she was on Keppra and that is levetiracetam. And also another medication called the clobazam, the brand name is Onfi. And still, she continued to have a frequent, you know, grand mal seizure approximately one seizure per month.

And, uh, so I saw here at that time, so then to confirm the diagnosis, you know, again, I repeated the EEG, so that showed findings consistent with the initial impression of, you know, like primary generalized epilepsy. And since her seizures are not controlled with these two medications, I started her on another third seizure medication called lamotrigine, uh, or the brand name is Lamictal.

Subsequently, I followed her up. Then even the initial part, the seizures are not controlled. So that time, I am also running an epilepsy monitoring unit in Bakersfield. So I admitted her, recorded her actual one seizure and confirmed the diagnosis actually the juvenile myoclonic epilepsy and nothing of any mimickers of, you know, that kind of epilepsy syndrome. And then we just continued her lamotrigine. And then since May 21, 2018, she became totally seizure-free.

Scott Webb: Wow! That's amazing, since 2018. And we're, uh, joined in this podcast by Megyn's dad, James. James, thanks so much for being here. I'd like to give you an opportunity between you and Megyn to discuss this journey, you know, with epilepsy and what was life like before treatment? We know that Megyn mentioned that it was pretty normal and I'm sure you would agree. So I'd like to just have the two of you kind of take us through what this journey has been like.

James Ashley: It's been a very interesting journey from the beginning. I mean, during my life, I've observed and responded to many seizure incidents through traumatic brain injury rehab clients where I used to work for my cousin, as well as in law enforcement and detentions, I mean, I would see people have seizures on a regular basis. Um, and they were something that happened and just required a trained response. So I didn't really have that much attachment to it.

And then when Megyn was about three or four, we were at a, uh, John's Incredible for a birthday party. We were just having a blast and playing all the games, and then all of a sudden, she seemed to go into what they labeled eventually as a stop-stare event because of all the flashing lights, uh, which basically scared me to death. So she was standing there and awake, but she had no clue of what was going on around her. So off to the hospital, we went.

At the hospital, they told me how synchronized flashing lights have been known to cause seizures and one study where, uh, there was simultaneous events in Asia and that I should probably avoid places with flashing lights for her. And at that point, it was just a wait and see. So we avoided those places and waited. And that was all good for about 13 years. And we had gotten back to active living, like she said, just going through life, dealing with school. She was playing some high-level soccer going through that teenage girl stuff. And at that point, I was a single parent and we had actually completely forgotten about the stop-stare event.

And then in 2016, life was different. I had had two shoulder surgeries and we noticed that Megyn seemed to be getting, what I just thought was kind of clumsy. And she started dropping things and spilling things and became irritable when it's all like, "Well, what's going on, kid?"

And then on March 7th of 2016, the whole world changed. I was writing a check for her. I think it was for a yearbook or something. And then all of a sudden, she was just standing there with that dead stare looking at me in the face again and down she went into a grand mal seizure. What I observed and responded over my many years, now had an emotional attachment to it. And life's never been the same.

So we went to the hospital that day, got stabilized, began the Keppra, and got a referral to UCLA Neurology where Megyn got the initial diagnosis for juvenile myoclonic epilepsy. Um, fortunately my cousin and his wife owned the Centre for Neuro Skills here in Bakersfield. It's a brain injury rehabilitation facility. So I had the luxury of talking to some doctors. And during those discussions, they highly recommended Dr. Veedu, who is an epileptologist specializing in epilepsy, as opposed to just the general neurology. Uh, so we transferred care and have been 100% forward moving ever since and very happy,

Scott Webb: What an amazing story that you had experienced with seizures before, uh, that you had this connection through your cousin. Uh, what are your thoughts about all this, Megyn?

Megyn Ashley: I honestly think its kind of crazy. I never expected this to happen. I've never seen it in my family. Before in high school, it was going and I was excited and because I was going to get my license, I was even more excited. Unfortunately, I didn't get to drive at all in high school. And now ever since seeing Dr. Veedu, I am seizure-free and able to drive. And I actually got into making cups and I made myself an epilepsy cup and some people saw it and they actually wanted to buy them. So I'm kind of getting into making those.

It's really nice to have the support and have people understand because in my family, I don't know anybody that has seizures. So if there's a way for me to like connect to somebody who also knows what it's like, that's nice. So I don't feel like alone almost, and that nobody knows what it feels like or anything like that. That's nice too, even if it's just on, uh, Facebook, where I found a couple, um, epilepsy groups and so that's where I've kind of connected with people and then has been able to talk about it and I can reach out to them or they can reach out to me.

Dr. Veedu really helped. And I feel like my life is not back to normal. It'll never be normal again, but it is close to normal as I'll ever get.

Scott Webb: Yeah. I have a 17-year-old and I know how important driving is to high school kids. And so I'm so glad to hear that you've got that-- uh, you know, that you're behind the wheel and you've got that confidence and have made all these new connections and new friendships. Uh, it's really an amazing story.

Doctor, you know, you had said that she didn't respond well to the first couple of medications and then you found the one that did, why do you believe this medication worked? Why do you believe it's been so successful that she's been able to make it so long being seizure-free?

Dr. Hari Kuhni Veedu: Megyn's epilepsy actually belonged to the group of primary genetic epilepsy where actually, you know, seizure started from10:10 brain at the same time. Her epilepsy type is called the juvenile myoclonic epilepsy, is one of the most common kind of epilepsy syndrome. You know, the primary genetic epilepsy includes childhood absence epilepsy or juvenile absence epilepsy. There are few other types also, uh, under the primary, you know, genetic epilepsy.

So as Megyn's dad told, she had an episode of the staring, even like several years when she was a small child. Probably, you know, she might have childhood absence epilepsy throughout her life. And they as the time passes, you know, sometimes, you know, like it changes into this juvenile myoclonic epilepsy. As I said, the juvenile myoclonic epilepsy can be able to start when you are a teenager. Or like some other, you know, childhood absence epilepsy as when you grow, it can transform into a juvenile myoclonic epilepsy.

And then, eh, you know, there are certain kinds of medication really responsive to this kind of epilepsy syndrome. And one of the best medication for this condition is actually something called valproic acid. But for females, unfortunately, you know, the young women, you cannot prescribe valproic acid because this medicine is associated with a lot of, uh, you know, like teratogenicity. It means that when they become pregnant, there's a high chance of a malformation of, uh, the child and also developmental abnormalities and everything. So we avoid valproic acid in all costs in women in the reproductive age group.

From the UCLA, they already started her on Keppra, levetiracetam. So it's kind of, uh, um, the medicine that, you know, like generally people will start for 11:57_____ nowadays. And, uh, so usually like, uh, uh, one other medicine that actually, uh, is good for this condition is lamotrigine and other medicine is actually topiramate.

Clobazam actually could be added like a second line medication. I don't know what made them to start her on this clobazam. You know, when they found out that either the Keppra or the levetiracetam is not working. So, uh, you know, it is very obvious to me that the second medication actually they had to try lamotrigine. In the young female, when you prescribe the medicine, the most important thing you are worrying about is what is the chance of that going to cause like a birth defect to the babies. And comparing to all the seizure medication, lamotrigine and the Keppra, uh, are the medications with the least chance of having birth defects. So I started lamotrigine and then, you know, after optimizing the dose, she became a totally seizure-free.

And the other thing I want to emphasize about the birth control in young women. Some of the seizure medication actually interact with the birth control and the efficacy of the birth control will come down. Since she's on clobazam and the lamotrigine, there is a slight chance that the birth control may fail. So that's what I always insist people to take folic acid when they are on seizure medication in this age group. And always, you should, the think about planned pregnancy. If you want to get pregnant and then, you know, like we should make sure that your seizures are well controlled. Your medication levels are good. And throughout pregnancy, we have to monitor the level. So that we can prevent any breakthrough seizures. That's one point I need to really emphasize

Scott Webb: You know, I want to bring James back in and have, uh, Megyn and James, you know, just kind of tell the community what you've learned about epilepsy. You know, Megyn, you had said that you really didn't know much about it, didn't know anybody who had it. And James, you'd had some experiences through your work. But what would you like people to know about epilepsy?

Megyn Ashley: Well, I know it can be very scary. I don't remember for a certain amount of time before it happened and then for a certain amount of time after it happened. Sometimes I don't even know I had one. It's scary because you never know. I mean, some people can like feel it coming on. I unfortunately can't. I think you really want your seizures controlled, you have to believe that everything and trust that everything's going to be okay. Because when I first got my license back, I was nervous, but I gained the confidence and I just trusted that everything would be okay. Even going to work, it can be scary because I don't know if I'm going to have one. I don't want to let epilepsy take over my life. I need to push through it. It can try and hold me back then. I'm just going to keep partying.

People just need to know that it's going to be okay. And if you can find somebody who knows how it feels, I think you should reach out, especially just to talk about it, because if you don't have anybody who knows what it's like, it's going to be hard to explain it to anybody. I think the main thing would be don't let it take over your life. If I would let it take over my life, I would still just probably be at home and just be disappointed. But, um, I'm not letting it take over my life. I'm going to do not always what I want to do, but two jobs, school, it can't take over my life. I need to push for what I want.

Scott Webb: Definitely. And James, I'm sure, um, you're quite proud of her.

James Ashley: Oh, absolutely. Her experience has affected me greatly. And if I were to be able to talk to other patients' families, I would like to express that it will work out. One way or the other, it will work out. And we may not like, uh, some of the aspects of the journey, but our paths have a purpose. And Megyn's situation definitely refocused me and my priorities and things I took for granted and the importance of being the dad role in her life. And having been an athletic coach to her, I needed to step up my game and be a parental coach to her and listening to her. Obviously, some of those things have taken and that just makes me so proud.

Um, so in my case, I know that as a support role, it's up to me to make sure that my epilepsy warrior knows that she doesn't fight alone. And that someone is there to support her through it, to keep her safe if a seizure does break through and to never let her diagnosis dictate who she is or what she does.

Scott Webb: Yeah. I understand completely where you're coming from. I have a daughter as well, a 13-year-old, and I had the pleasure of coaching her and, uh, I know how important that bond is between a dad and his daughter. I'm just so proud of you, Megyn, and the support you get from your dad. And I love the message of just keep fighting.

Every dad ever would want that for his kids, his daughter, especially. Doctor, as we finish up here tonight, I just want you to share with the community what we need to know about epilepsy. We've heard Megyn's perspective, a patient's perspective and a dad's perspective. Now from you doctor, what do we need to know about epilepsy that you think people don't already know?

Dr. Hari Kuhni Veedu: In general, uh, what I want to tell the people who are suffering from epilepsy, like 70% of people with whatever epilepsy, focal or primary, you know, genetic epilepsy, we can very well control it with a seizure medication. Only 30% of the patients, you know, the seizures cannot be controlled with the seizure medication. But for those patients with the focal epilepsy, we have so many other options like the epilepsy surgery or like there are neuromodulation procedures, like a responsive neurostimulation, vagal nerve stimulation, dietary therapy.

There are so many other options available now to, you know, take care of the epilepsy very well. So the most important thing is making the appropriate diagnosis. And, uh, you know, getting the right medication and then follow with a specialist and then do the right thing. And overall, the most important is very good family support system. And Megyn is so lucky to have a dad like James. You know, most of the time he comes to the appointment, he is so active for he knows every aspects of the treatment planning and everything. So she's so blessed like that to get a dad like that. So that actually, you know, is really important when you are dealing with a difficult situation like this. I think like just hearing the word epilepsy, you don't need to get so much like terrified. There are a lot of hope and then, you know, uh-- to see a specialist and to select the right medication, that's the most important thing. And then, you know, go from there.

Scott Webb: Yes. Well, this has been an inspirational conversation we've had. Megyn, you've been, um, so honest and really so amazing to tell your story, to take us through this journey, uh, to leave us with that message of don't let epilepsy, uh, guide you, dictate your life, to keep fighting. Uh, James, the support that you have, the love you have for your daughter. You can even hear it from Dr. Veedu. You're always there, you're always involved and you're always right there alongside Megyn fighting with her.

James Ashley: I cannot express the gratitude I have for Dr. Veedu's mannerisms. And like he said don't let it terrify you. I started to get a little choked up a little bit ago listening to her. But it's definitely important that people understand that if you find a doctor that you respect and you trust and who is honest and open, and will discuss it as thoroughly as he does with you, that the information can take the terror out of it. I mean, like I said, I had seen several seizures before, but there was no emotional attachment. And for a doctor to be able to soothe that aspect in his treatment manner is an amazing thing, which encourages me and helps me as I support her because there is a caring factor and Dr. Veedu definitely has that.

Scott Webb: I'm so glad that all of you came together to help solve this puzzle, this mystery for Megyn. And all of us parents, anyone listening to this knows how you feel, James, that when we trust our children with a doctor, we need the information. We need someone to be transparent. We need to be able to trust them. And it sounds like you have complete trust and faith in Dr. Veedu. I wish we could all sort of group hug here. Uh, it's just really an amazing story. So proud of you, Megyn, as I know the doctor and your dad are. And I just want to thank you again, all of you, for being here, for sharing this story and sincerely everybody, stay well.

Megyn Ashley: Thank you.

James Ashley: Thank you for having us.

Scott Webb: That's father and daughter, James and Megan Ashley., And Dr. Hari Kuhni Veedu, an epileptologist with Dignity Health. For more information on epilepsy, go to DignityHealth.org/bakersfield. And if you found this podcast helpful, please share it on your social channels and check out the full library for topics of interest to you. This is Hello Healthy at Dignity Health podcast. I'm Scott Webb. Stay well.