New to Epilepsy? Navigating Insurance, Doctors, and Other Advocacy with Erika Fleck

In this episode, we sit down with Erika, the founder of the Epilpesy Advocacy Network and secret comedian. We discuss her journey with epilepsy as a mom and creating what she so badly needed when she was first diagnosed— the Epilepsy Advocacy Network. Through candid discussion we learn how Erika came to the decision to have brain surgery, how she handled epilepsy and being a mom, and how she came to founding EAN. The Epilepsy Advocacy Network provides those diagnosed with epilepsy many resources, such as: HOBSCOTCH, PACES, Peer support, and even help navigating insurance and finding the right doctor. We hope you enjoy this converation with Erika!

Erika (00:00.238)

One thing I would say is speak up because there was a lot of times I didn't speak up. didn't, I kept it all inside where if that medication that I was on, it made me feel very depressed. I felt isolated at times. You know, it looked like I was okay, but deep down, um, I remember talking to a friend of mine and I said, this medicine's just, I don't feel nor I don't feel right. I don't feel like myself. I'm crawling out of my skin and

keeping that inside, wasn't until I found the specialist, the epileptologist that I started going to, and when he looked at my medication, he was like, well, no wonder why you're walking around like a drunken sailor. I'm like, this isn't normal. And he goes, no. And I'm like, jeez. But that would be telling someone, speak up. Don't hold it inside. Don't give up.

I want you to keep, you know, I don't want you to stop giving up, but I also want you to speak up. I want you to be that advocate for yourself. That's what I would tell someone.

Jordan (01:10.862)

Welcome Carpe Season, Young Adults with Epilepsy's podcast. A podcast by a young adult with epilepsy for young adults with epilepsy. Hi, on today's episode, have Erica Fleck, the founding director of Epilepsy Services at Epilepsy Advocacy Network and one of the funniest people I've ever met. Welcome to the podcast, Erica.

thank you so much. That makes my heart warm when you said that. You're one of the funniest persons you've ever met. Thank you. Thank you for having me. I really appreciate it.

My probably obvious opening question is what has been your epilepsy journey?

It's been a curse and a blessing at the same time. The curse was when I got diagnosed and I got diagnosed at the age of 30. But I was having, I had my very first seizure at 21, but nobody knew what it was. It was unprovoked, but nobody knew. And I was misdiagnosed as to having panic attacks. It wasn't until I was 30 years old.

and I got in a car accident and I had my first seizure. And the worst words you could ever hear, well, one of the worst words you could ever hear was, you have epilepsy. And, you know, I had no idea what it was. Nobody in my family had it. And it was kind of like my life paused and I was just in survival mode.

Erika (02:42.326)

I felt like for the whole time in those five years. The blessing was that I was able to be a candidate for brain surgery and seek seizure freedom and then was able to help others with their journey. That's the blessing.

What helped you come to the decision of doing the brain surgery? Because I know when we've talked before, that's something you said you've helped kind of guide other people through. So what was that decision making process and what do you kind of go through when you help other people make that decision?

Well, there was a lot of tests that I had to have and I couldn't drive for five years. I was a young mom, had two little girls. It just wasn't a, it was just not, I couldn't, this was my life. And they told me, here was your option that you could have a brain surgery. The doctor, I'll never forget, slammed open the door and says, you're a dream candidate for brain surgery. And of course, know,

I was like, okay, that's great, but it's still scary. Worst thing you could do is start looking up things online. And I tell everybody not to, but everybody does. I diagnose myself like every day with something. And I was very, I kept, I looked up things and then, you know, talking to the doctor and I had one last seizure and I'll never forget I was, I fell and

My husband was in the basement and I remember he came running up. had to go to the emergency room and he goes, it sounded like a bowling ball fell. I'm like, we don't even own a bowling ball. I'm like, geez. And he goes, it was you. And I'm like, great, now I look like a bowling ball to you, but no, but it was that sitting in the hospital. like, I can't keep doing this. It's going to get worse. And so I had the brain surgery.

Erika (04:43.694)

I'm not gonna lie, it was very scary, but again, it was one of those things that I was in survival mode. And when you're in survival mode, you're gonna do anything. Anything just to keep, I wanted my life back, my old life back. So that's why I did it. I didn't really have a choice.

That's very understandable. This question is off script a little, so you don't have to have a perfect answer for it or answer it at all if you want. But I'm wondering if you felt there was any unique challenges like navigating your epilepsy diagnosis in those beginning times while having young kids. I was just wondering, because I've never had anyone on the podcast with epilepsy that has kids, so I was just curious.

It was hard because the very when I first got diagnosed, I just got married and then I got diagnosed and I found out I was pregnant at the same time. I mean, talk about huge life changing, you know, things just got thrown at you. And doctor talked to me, said, you know, I was on a good medication that wouldn't cause any side effects. And at that time, it was still pretty

control. I had the baby, but then it was my first one and then they came back with the vengeance and it was hard, you know, because epilepsy is like, know, it's like that honeymoon phase in a sense. You'll understand that kids when you are in a honeymoon phase. It's really great for a while and then it just goes right down. But it came back and you know, it's like a monster. You never know when it's going to come.

you think you're doing really well and then it comes back.

Erika (06:30.978)

I had a great family, a good support system that was able to help me. I didn't, but I guess, I'm like, I was still a mom. I still had to be a mom. I still had to feed them. I still had to change them in care for them. That never changed. And so I didn't let it, I tried not to let it get to me and it didn't.

That's wonderful. Why did you see the need to begin the epilepsy advocacy network? I really want to dive into that because I think it's one of the most interesting services I've seen online. So if you just want to talk about why you felt the need for it.

Well, in the rural area that I'm from, there wasn't a lot of education or awareness. And I never knew about services that we could provide for people for empathy. And so I just I just wanted to be an advocate for them. You I was lucky to have a supportive, you know, family and friends. And I just felt that I needed to share my story.

My story wasn't over. You know, I felt like I still had to continue to do this. Like I said, I got handed an olive and I made a martini out of it. So it was important for me to do this. And like I said, there was, there's a lot of people that are diagnosed every day. And that was, when I saw that, that number one out of 26, my God, that's a big number.

And at first I felt so alone in the area where I'm at. epilepsy, barely knew anybody. And then I found a support group and more. And then as I kept coming on and, know, as I did my journey, went through the brain surgery and then continued to talk to people, more people started coming to me. I've been diagnosed with epilepsy. And so I just felt that there was a need for me to do it.

Jordan (08:36.704)

Yeah, I feel so I I grew up in like a suburb area and it definitely was I feel like I didn't well I honestly didn't like know anyone else with epilepsy until I started working for young adults with epilepsy which is insane because I started working here when I was 23 and so the fact that up until that point in my life I hadn't met really anyone else with epilepsy but like growing up in like that suburb be more rural area

It was a very different experience from where I am now living in a big city where I can take the train to any appointments I have. have significantly more resources here as someone with epilepsy, where I feel like starting from somewhere where you can't get anywhere without driving, there's no public transit that made it a lot harder to advocate for myself and get into the places I need to. So I think that's such a beautiful sentiment about.

Trying to bring that advocacy to the rural areas that don't have as many resources. I was wondering if you could talk about some of the services you provide and how you've learned to be able to advocate for others.

We do support groups, but support groups aren't for everybody. So we do a lot of one-on-one. If a young mother calls me, or not a young mother, but if a mother calls me and says that their daughter just got diagnosed with epilepsy, I start talking to them about what the type of medications they're on. Have they talked to their school?

Then if they haven't, reach out to their school and we provide pre-seizure first aid training and how to administer rescue medication to that school. Then at that point, I make sure that they're seeing the right, correct doctor. know, sometimes too, it's hard to navigate through insurance. And I'm like, I'll take care of that. You got other things to worry about. Let me do that part. You know, I'm kind of like their middleman. Almost like, you know, they're like, you don't have to do that. I'm like, I'm like your assistant. I'll do that.

Erika (10:35.948)

No worries, you know, I who to call and who to talk to. So if that particular doctor doesn't take that insurance, I'll find another one that does for them. I will meet them at their appointments. For that reason is sometimes it is overwhelming. They may not know what the EEG is, what now they got to get an MRI. What is it video EEG? I just had an EEG done for an hour. You know, sometimes the medication and

Just being there just to kind of give that support. They're not alone through all this. Like I said, had a good, my parents would always come with me to my doctor appointment and I was able to always get a ride or have that second ear and like, what does that doctor say I'm supposed to do? Same. We also do, like I said, we do seizure first aid trainings. We do them every fourth Tuesday of the month. We do those for free. Anybody can come on.

We also go into the schools. We offer medical equipment. You know, as soon as someone gets diagnosed, we offer help them with a seizure safety pillow and provide, you know, assistance to get other equipment. Travel, we can help with like that expense to get to the doctor because sometimes, you know, from here, you know, they're like, I got to go up to the doctor another time. You know, that's it can be a lot for someone.

We also do these managing epilepsy wellness programs. We do hopscotch where we're a cognitive memory coach for someone with epilepsy. This is for adults. I always laugh when I start doing this with someone because they're like, hey, my wife could really use this, you know, or my husband could use this. And I'm like, everybody can use hopscotch, you know, but I do help with that. I think when you're diagnosed with epilepsy, think...

You do notice the effects of the medication. You know, there is that fog. You know, there is that fog of that delay, I feel. And so you do question sometimes. I can't remember things. I remember writing in a diary. I always kept a diary. I'm like, this new medication I'm taking. I'm like, I remember having to go to my employer and say, you're going to have to tell me that again a couple more times what exactly happened. And you know, I would have to.

Erika (12:59.724)

right now. So, and we also offer another program called HuffWitch. That's another managing FLT wellness program. So we're just there to support that person through their journey.

Yeah, I think it's so powerful and I had done a podcast episode with my mom a little bit ago and she had said, like when I was first diagnosed, the main thing was back in the early 2000s, there wasn't resources like this and especially for parents. She was like, I had no idea what I was doing. didn't, I'd like never seen a neurologist before. She was like, I just needed someone else to be there for me. And there wasn't the internet and these kinds of resources back then. I know

I'm sure that's so powerful because you know, parents really need that help guiding, especially when it's their child that has epilepsy. So I find that so powerful. I was it's so funny though. I was on the phone with my insurance the other day because my neurologist emailed me and was like, we're not taking your insurance anymore out of the blue. Also turns out they were taking my insurance. They just emailed me the wrong information. So but I was like doing it. I was like, oh.

maybe I should have Erica do this for me so I don't have to deal with it but I'm trying to be more independent I was like normally my mom does this oh Erica does this should I contact her but I'm working on being independent

Yeah, yeah, yeah. But it is. It is a nightmare. We're having to deal with all that. You're like, you know, and you really don't know until you're in those shoes what someone actually goes through. You know, how am I going to get to the doctor? How am I going, you know, will my insurance cover this type of test? Will my insurance cover this medication? You know, that's another thing. We do help with medication. had someone had called and they were like,

Erika (14:55.182)

I didn't meet my deductible, so now the medication is this much. And so was like, whoa, whoa, whoa, whoa. And that's a scary feeling because, you know, if you miss your medicine, you could have a seizure and start all over again. so we can help with that also. It's one less thing for them to worry about. Just trying to be cool again.

was wondering how, so you've been doing this for a while. And so how has it been to see some of the young people you've helped kind of transform into adults and working with them again and seeing that progress? Like, how does it feel to see that and kind of see that growth in people?

It's a good feeling. Then you make it really makes you feel old. When you see someone that I started working with, you know, at the age of 12 or 13 or 14, and then I see them and they're doing really well. And they're all going to college and parents were like, they're doing great. When I talk to them, it's like,

Maybe deep down they think about it all the time, but you wouldn't know it. and that's, you know, and that's one thing I always tell, try to tell people, you know, I'm like, you may have epilepsy, but epilepsy doesn't have you. You know, I have it, but it doesn't have me. It never stopped me before to do the things I wanted to do. Um, except for drive. Um, that was the only thing that stunk. Um, that really stunk, um, that whole driving situation. But, uh,

It does feel good when you see them and they're doing very well.

Jordan (16:30.83)

beautiful. I was wondering what advice you would give to young adults with epilepsy or just anyone beginning that journey because I'm sure you have great advice and so this is what you do day in and day out.

Well, you I thought about that, you know, and sometimes you always hear people say, don't give up, don't give up. But the one thing I would say is speak up because there was a lot of times I didn't speak up. didn't. I kept it all inside where if that medication that I was on, it didn't make me feel it made me feel very depressed. You know, I was

I felt isolated at times. You it looked like I was okay, but deep down, I remember talking to a friend of mine and I said, this medicine's just, I don't feel nor, I don't feel right. I don't feel like myself. I'm crawling out of my skin. And keeping that inside, it wasn't until I found the specialist, the epileptologist that I started going to, and when he looked,

at my medication, he was like, well, no wonder why you're walking around like a drunken sailor. I'm like, this isn't normal. And he goes, no. And I'm like, oh, jeez. But that would be telling someone, speak up. Don't hold it inside. Don't give up. I want you to keep, know, I don't want you to stop giving up, but I also want you to speak up. I want you to be that advocate for yourself. That's what I would tell someone.

Yeah, I think unfortunately that was a lesson I learned very late in my epilepsy journey. Um, but it was an important one in my, I think it was, yeah, it was my senior year of undergrad. was sleeping like 12 to 16 hours a night and I was like, Oh, it's just my epilepsy. It's like not a big deal. This is just a thing that's happening because I'm tired and I'm a senior and I'm trying to defend my thesis. And, um, at that point I was like applying for grad school and getting ready for grad school, but

Jordan (18:33.582)

I eventually was like, maybe this is something I should ask my neurologist about. And she did the tests and such. never, by the way, I like I never had a blood test to see my medication levels, which I'm now learning is a normal thing that my neurologists in the past when I was a child should have been doing. But I had never had it until I was 22. But she was like, the level of medication in your system is like

in the toxic range. it was like out of like it was like normal would have been between like it was something like the high end was 12 and mine was like 80. Like it was just she's like this is insane. We need to switch your medication. And yeah, that was kind of the first time I really was able to be like, I'm going to advocate for myself and I'm going to ask questions. And and now I'm like at the point where I'm like, wow, I really can't believe I was living like that. Like

Now that I feel so much better, I'm like, wow, that was not normal. And I don't know why I convinced myself it was normal. I feel like that's kind of a thing that happens when you don't advocate for yourself is you kind of just gaslight yourself into thinking that things are normal that aren't normal.

Or you just kind of, you just become adjusted to it. Like you're just like, well, this is it. You know, this is, that's how I'm like, this is my life now. I just got to take this medicine and be very forgetful. Didn't want to eat. And it made me, it was a scary, it was, it was scary to me because I never saw that side. I didn't know that was another side of me, you know, where I was really sad. I was very angry. You know,

Anytime you get diagnosed with anything like from diabetes to MS or cancer, you go through those breathing stages. First you're in denial and then you go into anger and depression and that stage stays there for a long time. I think I was like that for almost four years. When I hit it well, some people would say,

Erika (20:44.238)

probably the people closer to me, but if I went to work, you wouldn't know, you know, I could still act them like this, you know, but there were times where I would, you know, go into the bathroom and lean my head up against the stall because I was exhausted, not hungover, I was exhausted, but just tired and trying to gain my thoughts. And then there were times where I would just be crying because I'm like, this medicine is just making me so overwhelmed.

irritable and really sad and that wasn't normal.

Do you end up, I'm just wondering with what you do, do you end up having conversations about things like that a lot with the people you help kind of guiding them through medication and side effects because working at Young Adult with Epilepsy and the people I interact with, feel like that's kind of the thing that people reach out for help with the most is, this normal? Has anyone else experienced this? And so just wondering if that's something that you hear a lot.

Yes, do. I do a lot. And sometimes too, they tell me the medication they're on, or even their parents, I tell them to look for these signs. I'm like, look for this. Especially, I mean, everyone's going to say, Keppra. You know, there's Keppra rage, you know. But there's some people who are on it and they're great. You know, they're doing fine. I'm like, okay, great. But you do hear, you know, I tell them, hey, you're going to want to look for this just in case.

If it's too much, then going to want to talk to the doctor. Maybe you're going to have to scale back or change a certain medication. Same with topamax was one that I remember that I was on. The only good thing, I think I lost a bunch of weight and I was like, my God, I could fit in these jeans again. My goodness. That was the only good thing, but I was dumber than a box of rocks. But then it does work for some people.

Erika (22:41.42)

You know, there are some, but I like to talk, I want to talk to them and make sure that they know even to, there was something that I never thought about because was even medication that in your, especially with a woman with your childbearing years, you know, there's some medicine that it would not have, would not be good to be pregnant to be on that medication. Just things for them to look at and to ask, know, you know,

I guess there's something I would have never thought to ask that, you know? Never thought to ask those.

Yeah, and I think that's something that I've learned is so powerful about support groups and like the resources that you provide because Like joining in adult with epilepsy and having these like groups of people There's so many things that I had never thought could have been related to my epilepsy in my life. I've always been like, I'm just forgetful or It just takes me a lot more energy to do the same mental processing as other people

and then getting to have that interaction and those people to talk to him like, wait, this is probably my epilepsy. And I just had never noticed because I started having seizures when I was eight months old. And so it's been my entire life. And so I never thought that it could be something like that. And I feel like I've learned a lot more about myself in the past few years now that I've met other people and wish, I mean, I wish I had these resources more.

when I was younger, particularly in high school, because I think I'm sure you get that a lot. That's such a hard time to have epilepsy when everyone else is getting their license and doing all these things and going out and you're like, no, I can't drive. Can you please pick me up and take me somewhere? But yeah, and so I think that's something beautiful about what you do is just having those conversations with people because there's so many things I've learned from those conversations.

Erika (24:38.254)

It is a good resource to have. It's just that other person to lean on. And just like you said, I didn't have this information. I was kind of going in very, I felt like blind. I'm like, okay, I guess we'll do this. All right, well now I had another seizure. Now what? Now they're gonna add another medication. Is this normal?

It was a...

It's a lot to go through by yourself. It really is.

Yeah, I just, I always think back and I'm so glad that people now have, you know, the internet and like the ability to get to these resources so much easier because I always think I was talking to someone recently about how in certain areas and like, specifically it was about like Oklahoma and how the a lot of resources just don't exist there for medical needs and how so many people have to drive to Texas to like.

get the proper care they need and to be able to get their medications and such. And so I was just like, wow, like I can't, I feel like having the support online is so important if you can't even get that support in person from a real doctor without having to, you know, travel super far. And so I just think it's so important and I really appreciate what you do because I think I, yeah, I just can't imagine being a parent and having to deal with that or going through it as someone that had

Jordan (26:10.158)

I would say like I was not conscious when I first started having it because I really I had no concept I was eight months old and so it's just something I've been used to and you know something that was just there when I developed a sense of consciousness and self but I can't imagine going through that later in life or as a young adult so I just think what you do is so important

I what you do is so important because I would have loved to have listened to this podcast when I was diagnosed. It would have helped so much. So you're doing wonderful things too. thank you because this is, would have never, geez, I don't think there was podcasts back then. I don't think so. No, there wasn't. So I didn't have this. A lot of people didn't have this.

thank you for doing this. And I think when you get more people talking about it, they feel a little better about coming and talking about it. know, there's such a stigma with Appalachia. You know, I remember one time too, just listening, I remember, you know, my mom and dad had no idea. And, you know, I thought, you when I was like, you're not faking these. I'm like, why would I fake these? And I'm like, yes, I want you to give me a ride to the grocery store.

Yeah, that's exactly what I'm doing. I'm going to spend all my time with my mom and the grocery store and my dad, you know, but I'm like, no, I'm not going do these. I wish I could, you no, but you hear that a lot, you know, you do feel like you're a burden on people. that stigma, you know, and I think when you hear more people talking about it, it's making it, um,

You hear more people hearing about their resources, it's being more helpful.

Jordan (28:07.766)

Yeah, I feel like there's also something that I have found so interesting is that every single person I've had on the podcast, and this is like the 10th episode I filmed, has a completely different story with their epilepsy and has, I've never had two people on that have the same kind of epilepsy or the same experience. And I think that's so important because you can have someone like me, I have like Todd's paralysis, which is a super specific kind of seizure. It's like 3 % of people with epilepsy have it.

and actually met someone through the podcast that also had that kind of epilepsy. And I feel like it's something I had, I never heard of another person like having it. And I've met so many people now, through these resources and through young adults with epilepsy. And so I think having kind of that representation is so important. And I always love, it's like you were saying like support groups aren't for everyone. And I found that there's so many people that want that passive experience of getting support without.

necessarily having to show their face or talk and I have found that this is such a good way to do it because you get that support even if it's not a direct conversation. And if I always tell people you should not be anxious to do one on ones or go to peer support or anything like that because it will be so helpful. But at the same time, I love hearing people say that the podcast has meant so much to them and allows them.

to kind of get that support without having to be, you know, face to face with someone. So.

This is great. And it is, you're right. You don't really hear, you don't have the same, you know, my epilepsy is different from Susie's epilepsy. And it's that spectrum disorder where I'm like, no, mine isn't the same. you know, I always wouldn't, I've had the brain surgery or other people, you know, have had brain surgery but didn't get the outcome. You know, I've heard doctors say, well, her epilepsy was different. It wasn't the same.

Erika (30:04.438)

But when I do say if you are a candidate for that particular surgery, I'm like, they're not just operating on you, just to operate on you. If you don't take that chance, I would say you've got another fight at the apple. Take it.

We're running out of time and our editor will yell at me if we go over 30 minutes. So my last question is, do you have any parting words for anyone? Anything you want to plug to the listeners or any final words? Sounds like you're dying, but.

I I would have to say, like I said, remember, I've always said this quite a bit, like you may have epilepsy, but epilepsy doesn't help you. You still do the things that you want to try to do. And people are understanding. And if they're not, then move on from it. You you hear that a lot, like what if I tell my friend, my boyfriend, or my girlfriend.

And to speak up, speak up. And if you have questions, ask. Don't be scared. Be that advocate. You're not the only one. You're not.

Those are great parting words. And thank you so much for being on the podcast.

Erika (31:21.47)

Thank you so much. I had so much fun. You're such a doll. I thank you very, much. This meant a lot to me and I appreciate everything that you do as well.

Thank you for watching today's episode. As a reminder, you can join Yahweh's monthly peer workshops or weekly peer support groups Wednesday at 530 PST via the link in our description to sign up. As well, we'll include all the links to Epilepsy Advocacy Network in case you need any of their services or just need a place to go.