Hey squad! In this special solo episode, Samantha takes the reins to share a personal health journey that's both heartfelt and eye-opening. As a proud advocate for Mental Health Awareness Month, she opens up about her year-long battle with mysterious seizures that turned her world upside down, all while finding unexpected strength and growth. 🌟

Tune in as Samantha spills the beans on her dramatic but ultimately triumphant trip to Costa Rica with her husband, Simon. From facing their rocky relationship on the dreamy beaches to encountering the awe-inspiring sight of humpback whales, it's a tale filled with twists, turns, and deep emotional moments. 🐋❤️

Discover how Samantha transformed her life through brain-spotting therapy, beat the odds against a misdiagnosis, and embraced a newfound sense of self-love and resilience. 🔄✨ She dives deep into psychological insights, the staggering misdiagnosis rates for epilepsy, and how she found solace and strength in her podcast journey.

Expect laughter, tears, and plenty of 'aha' moments as you join Samantha in this raw and real recounting of her inspiring journey. 💬💖 Don't miss out – especially if you're in need of some good vibes and encouragement to keep pushing through your own life's challenges.

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If you got a problem, Lottie's got the answer?

She won't sugarcoat them?

Cause it's Lottie and Lottie don't lie?

Cause it's Lottie and Lottie don't lie.

Welcome to Lottie Don't Lie.

It's Samantha and Melissa.

And today our episode is a little bit different.

When we play this recording, you'll notice that it is just me talking because Melissa kindly let me ramble on to myself about my own story to you guys.

So it's definitely different and interesting.

It's going to be really interesting.

I actually haven't heard it yet myself either, guys.

It's just one of those things where Sam needed space.

She wanted space to, like, tell her story.

So I cannot wait to hear her story and receive it.

So thank you for sharing.

Yeah, of course.

It was kind of hard.

One, because it is, like, super personal.

Two, I did get emotional at some point in it, and so I'm embarrassed about that.

But three, there is some statistics in it that are very important and need to be more known.

So that's.

Honestly, if the statistics are what gets out, then it's worth it.

And if people start getting diagnosed correctly, like, it's worth it.

That's.

Yeah.

I'm really actually anxious to hear it all now.

But it's because it's Mental Health month, too, right?

And we decided, like, let's share.

Let's share.

Yeah.

Which is hard.

It is hard.

But thank you.

You're welcome.

And yours is coming up soon, so.

Yeah, I think sooner.

We both get.

We really both get deep.

Yeah, it gets.

It gets deep.

But I don't want you to be embarrassed.

They got emotional.

I feel like that's what can kind of like, bond us all together is like, knowing that we've all been through some shit.

Right?

That is true.

It's the vulnerability that's kind of.

Kind of why we're here, Right?

Exactly.

It's exactly why we're here.

So.

Which you guys might actually find really funny, the fail that happened today.

So Melissa and I are getting ready to record, and it took 30 minutes of me going back and forth in my head of, oh, we're recording this.

Nope, just kidding.

We're doing this.

Nope, we're doing this.

I don't know what we're doing.

I was so confused.

I have so much on my mind.

And deadlines for a documentary that I'm working on and creating.

Deadlines for school that I'm in, deadlines for the podcast, and, like, they're all blurched.

Together in my brain.

And I'm at the point where it's like, I, like, I don't know, I need to do better at like, marking it in the calendar.

So, long story short, it took us 30 minutes to remember what we're recording right now.

And that is okay.

I just wish I could have helped more.

She's like, melissa, help me.

And I was like.

And it turns out in the end, like, I.

I kind of could have helped.

No, I couldn't have, because there was one key piece of information I didn't.

Have, and it was lighting.

I know, I know, but it's okay.

I just.

It was funny.

Cause I was like, yeah, maybe I should have been able to help.

No, wait, I couldn't have.

I'm just like, melissa, help me.

Give me my brain.

And she's like, okay, if I could.

Let me see, let me see.

Let's look at the calendar.

We were looking at the calendar and I'm like, no, like what you're saying.

I think we're fine.

And then she's like, oh, but actually, we have to have everything to this one person by this date.

Oh, okay.

That's why we need to get ahead of our schedule, so.

And I was like, okay, yeah, that's.

That's an important piece.

But we got it.

We got there.

We did.

And on a, like, better note, you had a funny story about an outing that you and Jacob had.

And I hear it because it's so cute, but it's.

This was so funny.

So it's not a fail per se, at least, but it's just like a wild little story.

We went out to eat to breakfast one morning, and actually it was me and Brett and Jacob, and we were at anyway, a breakfast diner in Cumming, Georgia, and I asked for water with no ice.

And the little waiter, he was like a 16 year old boy probably.

He was like, oh, I don't know if I can bring you water without ice.

And I was like, oh, that's weird.

I said, well, I just, you know, I don't.

Sometimes I feel like when it's cold, I can't drink.

Like, I don't drink as much water as I should because it's just too cold.

And he was like, yeah, I think there are health benefits to drinking warm water.

Okay, I got you.

So he came back and he had a mug of hot, hot coffee water with no coffee in it, just hot water, boiling water, kind of.

And then he had a glass that had ice water in it.

And he's like, so.

And Then he brought me an empty glass, and he wanted me to pour them together so that the water wouldn't be too.

So it would cool down the ice.

And I was just like, what is happening?

And I was not like.

He was like, I really thought maybe he's just pranking me.

But he was very serious, and he just didn't realize that he could just get me some water with no ice in it, just regular water.

And I guess he thought it had to be, like, you know, hot from the coffee thing or ice water.

And so it just.

It makes me think that he probably is just one of those people that does something the same way every single time.

And then when that routine gets thrown off, it's like, oh, I can't do that.

And exactly.

Like, you're like, oh, wait, like, I can.

But, like, it's hard for them to realize.

It was.

This is.

This is okay.

And I was glad that it was me, because I feel like if it was anybody, maybe somebody else, not anybody.

But he could have had.

Kind of mean.

Yeah.

And I was like, oh, well, thank you.

That was really thoughtful of you.

And I just, like, pouring.

Trying to pour him.

I'm spilling water all over the.

You're sipping on hot water.

It was so funny.

You should have a tea bag.

Yeah.

And then later, he was so cute because we were ordering.

Jacob ordered eggs, and he goes, you know, I've never really had eggs.

What do they taste like?

And it was like, I don't know.

It was so funny, but.

And then Brett was like, he's not gonna last.

There's no way.

And I was like, I hope he does.

He's so sweet, like, so kind.

And then we came back, like, a few months later, and he was still there, so I was very happy.

Yay.

But he was you, kiddo.

Yeah.

But he had lost some of his naivete, because when he served, he didn't remember me or anything, but when he served us, he was just.

He was just very, like, old hat.

He.

He knew what he was doing.

But I was like, I remember when.

You were just a little baby.

Oh, man.

I still have, like.

Like, go.

Oh.

Like, at the thought of being a server, like, it's a lot for just days.

I never want to do it again ever, ever, ever.

I feel like I would rather be, like.

I'd rather be, like, working in a landfill before being a server.

Really?

Oh, my goodness, my nose.

Okay, Got you.

Got you eucalyptus, like, salts you can, like, put up in your nose.

That's true.

That's true.

Anywho Anywho, I'm stalling now.

Are you guys ready to hear.

Let's go here?

Let's hear Samantha's wild story.

Hey, squad.

It is Samantha, and I am solo today for Lottie.

Don't lie.

Melissa has graciously let me run today's show as I share with you guys my personal mental health story.

So this is very personal, and not most people don't know what has been going on with me and what I have been working through the last year.

So I've decided that since it's Mental Health Awareness month, and the statistics that I'm going to share with you guys are so shocking that I felt like, how could I not share with you guys what I've been struggling with because it's significantly impacting so many people around us that I've learned you each probably know multiple people that actually struggle with the same thing.

So are you ready?

Let's do this.

Okay.

So when we started this podcast, do you guys.

For those who don't remember, you know, when we started.

I'll just kind of recap.

Melissa and I started this podcast shortly after I had started experiencing seizures.

Let me just paint the picture for you.

So I'm on my dream vacation with.

With my husband Simon.

We're in Costa Rica.

Costa Rica had been one of the places that we had been trying to visit four times, and it kept getting canceled as we'd get ready to go.

Either, like, one time we made it to the airport, we made it on the plane, and then the plane just, like, was broke.

Broke after three hours of sitting on this empty plane.

And so we had to get off, and we weren't able to go.

Another time, the flight just in general got canceled, and there was no other flights that were available for us.

Gosh.

Covid.

Covid hit.

And then that canceled one of our trips.

Like, we just.

We kept trying, and it kept not happening.

And so just the desire to go got stronger and stronger.

And why I wanted to go is because Costa Rica, one has all different types of environments to explore.

Like, I mean, there's literally a jungle, there's mountains, there's the ocean, and there's just a whole lifestyle to explore over there.

And one of the things that I really have enjoyed doing is reading about whales and their migration.

And I was particularly drawn to the humpback whale migration.

And there's a little town called Uvita that a lot of people haven't really heard of in Costa Rica.

It's not often.

It's not really traveled that Much.

And it's got this beach that's called the Whale Whale's Tail.

And it's known for being where the humpback whales go to give birth and teach their babies to surface and breathe.

And that is just something that I really, really wanted to see.

So Simon and I finally make it to Costa Rica after.

I mean, I literally think this is like our fifth try, and we finally make it to Costa Rica.

And the first two days, we are just not getting along at all.

Little did each of us know, we both thought that we were going home to get a divorce.

Like, we were just.

We were both separately that done.

And, you know, this is the dream trip and it felt miserable.

So let's.

I think we were two days into the trip, maybe, maybe three, and it was our day to go onto the boat and go out into the ocean where a lot of tourist boats are.

And they're like these big, big boats.

A lot of people are on it.

And I.

I think like a storm was rolling in that day.

Regardless, the water was ridiculous.

I mean, you're going up, you're going down, and like, when you, like on these waves, these like, big waves, and when you go down, I mean, it's like, it's so drastic and so hard that, like, you're popping up out of your seat and, like, hard to.

And, you know, it was okay.

Oh.

And somehow, for some reason, I can't remember if it was my fault.

I don't know.

But we got sat in the front of the boat too.

So it's like the worst part.

It's the part where you're getting hit the most.

You're experiencing, like, the motions more extreme than in the back.

So we get to out in the ocean, there's a bunch of different tourist boats that are all looking for a mom whale and baby and.

And there's one.

So we're all surrounded, basically, this.

This mom whale with its baby whale.

And I just remember just this big emotional release.

Like just these chills came over my body.

I'm looking at the mom whale.

Like, tears start coming out of my eyes.

And I just look at Simon, I go, this was worth it.

This.

This was amazing.

This is worth the wait.

This is everything I wanted.

And next thing I know, where were heading back to the beach.

I.

I literally don't recall from that moment back to us getting back to shore.

And apparently that's when I experienced my first seizure.

And that was really scary.

Of course, for Simon, you know, he doesn't know what's going on.

He that was, that was a scary experience for him.

And I can only imagine.

I don't know how I would handle that and what I would do in that situation.

So in a selfish way, I'm kind of thankful that it wasn't the other way around because I don't know what I would do.

So we get to shore, he helps me kind of recoup.

I think I remember someone giving me like juice and I remember we got like a snack and we went back and we.

Over the next couple days, it just something.

It kept happening and then I would have another seizure and then I'd be out of it for hours.

I have to go sleep, I'm exhausted.

And there's always like a.

There was always a build up.

It's like I.

So like the day of the first seizure, I woke up that day and everything fell off.

And when I say everything fell off, I mean like my surroundings felt like they were moving kind of like a wave and kind of slower than what they're actually moving.

I.

That sounds completely weird, but I guess if, you know, you know.

So my, I woke up, my surroundings are just.

Everything's moving in a different wavelength and it just.

I knew I didn't feel right and I knew that I was moving slower than usual.

And then the episode happens.

So as they keep happening each day that we're on the trip, thankfully we're still able to enjoy a lot of the things that we wanted to experience.

But it was challenging because I would have an episode and then I'd have to sleep for a little bit and it would just take me a while to get back into a normal groove and just be present again.

But they, I, I typically would feel the same things.

I would feel this, like, tingling in my body, the nauseousness in the stomach, and you know, it starts to rise to where I'm wondering if I really am going to get sick.

The environment starts moving.

I realize I can't hear what's exactly going on around me.

Everything just kind of turns into noise.

And I'm not hearing and seeing things like as they're happening.

It's like, it's very delayed.

What else happens?

I remember the final, the final thing is I remember feeling like, oh, fight this, fight this.

You got this, you got this.

But it would feel like my head would just get heavy.

And once I knew, like once I would feel that my head gets heavy, we learned that that's like game over.

Once the head gets heavy and I feel like I can't hold it up, there's going to be a seizure and I'm going to be out for a little bit.

And he.

Simon was so caring.

Like, he took so such good care of me.

Even though we each thought, like, oh, we're gonna go home and get divorced, like, he.

He really cared and he really took care of me and helped keep me calm.

And I remember we were sitting at dinner one of the last nights that we were there, and he just looks at me and he starts crying and he was like, this has been the most scariest thing I've ever experienced.

And I just love you so much.

And I just.

I, like, can't imagine anything happening to you, so we need to figure out what's wrong.

And.

And I remember just being like, wow, I needed to hear that.

Like, I really needed to hear those words.

I really thought that we were just on total different planes.

And it just.

I didn't see another option I wasn't getting.

I wasn't feeling the love that I needed and the attention that I needed.

And here I am experiencing, like, one of the, like, scariest points in my life and were feeling love for each other and being able to express it.

And it was definitely a big turning point for us.

So we got back into the United States and, you know, Simon was like, hey, if you have another one when we get into the States, like, we need to go to the hospital.

We didn't go to the hospital while we were in Costa Rica.

One because we weren't exactly sure what was going on.

I mean.

Yeah, we weren't sure what was going on.

I mean, you're.

You're in another country, and I don't know what you guys have experienced, but when you go to another country like Costa Rica, Jamaica, things like that, the food tastes different, it's made different.

It doesn't have all the that is in our food.

So you like, the tastes are all different.

I still swear I don't.

My kids don't believe me, but I swear, like, the bananas in Costa Rica are so good and they taste so different than the bananas that we have at home.

And it's really like the food is just more natural.

They don't have crap in them.

And so we really were thinking that I was having just some sort of, like, sugar crash, having less sugar in my food and less crap in it than what we're used to.

And so we were like, well, let's just get back in the States and surely it won't happen anymore once we get back to a normal diet.

So we thought, no big deal.

Like, let's just get the trip over with.

We get home, and it was that next morning that we were home is when all the feelings started coming again and I had a seizure.

And when I have one of these seizures, you know, again, I, like, I don't obviously, really know what's going on and what's really visually happening.

But as it's described to me, like, my body gets, like, really tight and, like, close together, and my eyes are fluttering, and my body starts jerking in, like, tight motions, like, into my body.

And oftentimes when I wake up, my.

My tongue would be swollen, and so obviously I bit my tongue.

And my mouth would be, like, really, really dry, so I'd need water.

But I also will have a hard time staying awake.

So, like, I'm constantly needing, like, falling asleep to take like, a little nap or something, and then waking up chugging water.

And then I get really, really, really cold.

So then I have to, like.

I mean, when this.

It was summer, when these started, like, hot, hot summer, and, like, uncontrollably cold to where, like, even though the environment is hot, like, I'm bundled in blankets and hoodies, like, trying to keep myself warm because I like, my body just, for some reason, can't feel warmth.

So, of course, all of these symptoms really do lead to a seizure.

They're classic simples, you know, classic signs of a seizure down to biting your tongue and your tongue being swollen.

So when it happens, when we get back that first morning back in.

Back at home, back in the US it happens again.

And I think my mom had had the kids the whole time we were gone, so we felt bad.

And Simon called his mom to come get Nora.

I think the big kids were still with their dad or something, and obviously a lot of this is still a blur, but we'll get.

We'll get to the point, I promise.

So I remember we get to the hospital, and because we had been out of the country, we got quarantined, which actually was kind of one of the funny, coolest things.

It's just like Grey's Anatomy when you watch someone get quarantined and you're in this, like, big glass room with, like, sliding doors, and all the nurses and doctors that would come in were in hazmat suits because we're out of the country.

It was.

It was wild.

But I will say I have never had faster care in a hospital than I did coming back from Costa Rica.

I mean, we were immediately in a room, immediately being treated.

It was great.

It was, you know, if you're gonna go to the hospital?

Maybe, maybe just say you've been out of the country.

I don't, don't do that.

I'm just kidding.

But yeah, don't do that.

So they're running all these blood tests and I remember they were, I'm really hard to get a catheter in like for blood.

And I remember that was one of the first things that they did is they wanted to make sure that they had a catheter access in, in case I started having a seizure again.

And I, while they were getting the catheter in, all the feelings started coming and I started warning them, like, hey, like I'm starting to feel all the things.

And then once my head started getting heavy, Simon, you know, told them, hey, like you got seconds, like she's about to have one.

And so I remember they like finished the catheter really fast.

They injected this medication that I guess like stops seizures.

And I remember this wave, like this just like warm wave just filling my whole body.

Like my chest felt hot and heavy and just as hot and heavy is running down my whole body.

And at this point they're getting ready to transfer us into a room because they've decided, you know, I'm probably not going to kill people from being in Costa Rica.

So they're willing us to another room.

And I, I really think I'm having a heart attack and I'm dying.

Like I just, I feel like I can't breathe.

And everyone's like, no, you know, your heart rate's normal, your oxygen is normal, like you're fine.

And I'm just wide eyed thinking, this is it, I'm about to die.

I know, I don't know what, I don't know why everyone's so calm.

Like I'm dying, this is it.

And sure enough, I was not dying.

They gave me like a, emergency like antianxiety injection or something and the feeling went away.

So I wasn't dying.

I guess, I guess that's like an intense panic attack.

So that's good.

I get scheduled an eeg.

So an EEG is when they attach all those little wires to your head and they can pick up on the brain wavelengths.

Like you can see if you move a finger.

Like you see like wave changes on this machine.

And a lot of times when they hook them up, you, you can see if someone has had a seizure because it'll be like some abnormal tease in the line.

But sometimes not, sometimes it doesn't show up.

So when I had mine, I had two the first one was inconclusive.

My I have a lot of hair and so apparently it didn't connect right.

And so they came back the next day and they did another one.

That one came up with no abnormalities.

So no answers onto what was going on.

I had a, an MRI or a CAT scan.

I can't remember which one's which, so I don't know the difference.

But I remember going into this machine and having like a scan in my head and there was nothing there like that could cause like a seizure.

So that was good.

But blood work was all normal.

We did all sorts of tests.

They even did a spinal tap and I really did not want to do that but they couldn't find any answers and they were like, you know, this really, really, really could give us the answer, like you really should do it.

And I just, I, I was so upset.

I did not want to do it, but I did it.

I actually passed out during the spinal tap.

I1 I don't do needles very well and I think I just worked myself out and I passed out during it.

But I remember like being able to hear and then her saying oh, she's out and then waking back up and I'm like laying back down flat.

And I was like, well I told you guys I'd probably pass out.

I passed out.

When my blood's drawn, it's just, just a whole thing.

So I was in the hospital for five days.

I had like just numerous tests run.

Nothing was coming up.

When I left the hospital, I left on anti seizure medications, Keppra and on a anxiety medication that doubles as like a antihistamine.

If I remember correctly.

It was a really, it was odd.

And Trazodone I believe I left the hospital with.

Yes I did because I, yes, I was having a hard time sleeping and I was so like overwhelmed.

Regardless, I leave the hospital on, on a handful of meds and their you know, recommendation is stay on this medication, this anti seizure medication and get in with a neurologist when you can.

Being on Keppra, I know that some people have been on Keppra and like have felt okay.

But there is wow.

So kepper your brain and your body has to get used to it.

So when you start taking Keppra you are.

I was high as a kite is what I guess the base.

The best way I can explain it, I like my, my brain just wasn't functioning.

I was sleeping non stop.

I was so tired and I was loopy.

I would forget what I was doing.

I would forget if I Took my meds.

When I took my meds, there was definitely a few days where I doubled up on my meds because I would take them, and then poof.

Am I holding my bottle because I just took them, or am I holding my bottle because I'm about to take them?

That's how bad it was.

Now I know that that is a very common side effect with Keppra.

It really clouds your memory.

Not even just when you start taking it, but long term, it affects your memory.

So I did learn that there's people that would have family members that have seizures and on Keppra, and they were like, yeah, no, that's really common.

Like, we have to do this really strict medication tracking system because they will just be looking at their pills and can't remember if they just took them or were about to.

I was like, great.

Okay, well, that's good.

Good to know.

Kepper is also a very big side effect of it is rage.

And that is definitely something that I did not want to experience.

Fortunately, I don't feel like I ever got the Kepper rage because I didn't take it for too long.

It was only maybe two weeks before we did go to the neurologist.

And she.

I remember we felt like, okay, she's gonna figure out what's going on.

But what she did is she sat with us for maybe about 30 minutes and then basically just kind of shook up all my meds.

She wanted to wean off a Kepper and put me on this other one.

And I think it started with an L, but I can't remember what it was anymore.

And she, like, upped my anxiety and changed my anxiety meds, and I can't even tell you anymore.

Basically shook up my meds.

But ultimately she ended up having me.

She.

I remember the goal was to wean me off Keppra, but she ended up having me on Kepper and this other anti seizure.

So I was on two anti seizures at one point because she ended up deciding to keep me on both of them on top of the anxiety medicine, which I think is what I still take today, anti anxiety and depression.

So we follow up after three months of her changing things up.

And what we remember from that appointment is that in three months, we would check up, see what's been going on.

Has there been any more seizures?

And then start doing whatever we could to figure out the cause.

How can we get rid of them?

Because every time I'm having a seizure, I can't drive.

I can't drive for six months.

And so at that point, by time we had seen her, I had still had a seizure since the hospital.

And so my driving, that was, let's see, that was what, in September or something?

Like in Sep.

No, September, October.

Then like October, October, November, something.

Regardless, my driving had been provoked it until well into the next year.

So that's also really stressful.

I have kids to drive around.

Being on the Keppra, it, it just affects your brain so much too that I couldn't function and no one really knew what was causing the seizures and when they would happen.

And so my mom was at my house every day, like basically taking care of me and Nora because I was a ticking time mom, couldn't leave the house, didn't know what was going on half the time.

So we go to the doctor and she spends five minutes with us in the room at our follow up appointment and says, great, stay on these meds.

You know, we'll see you, we'll see in a while.

And I, I think, let me correct.

I don't think we, we did.

We saw her in a month after being on the meds.

Not, not multiple months.

It was, we saw her about a month after the initial med change and meeting her, saw her for the five minutes and then she was like, all right, cool, we'll see you in six months.

And Simon goes, whoa.

I thought, like, this isn't ideal.

Like, we're loaded up on meds, we don't know what's causing them.

Like I thought the point was to figure out.

And she was like, well, the meds have improved it.

Maybe not perfectly, but they have improved it.

So let's just stay on the meds and we'll reevaluate in six months.

I remember just kind of being like numb and not.

I don't think I really had an opinion.

And Simon was very, very, very adamant that that's not acceptable and that's not what we're doing.

We're going to know what's going on and we're going to figure out how to solve it.

And so I'm really thankful that he is, you know, just when he wants something, he's going to find a way to get it.

And that's just how he is.

And so he wanted to know what was wrong with me and he wanted to help me get better.

So we talk to friends and we find other neurologists that we know, people that have used them and we, that was probably a few months, a couple months.

Few months.

Definitely.

I mean, probably within two months or whatever of seeing that Last doctor we see, the new, this, this neurologist and he spends, I mean, an hour and a half in the room with us for our first appointment, going over each symptom, like what happened, like history, like, what does it look like, what does it feel like?

Like just all these things.

And I remember in that appointment just feeling like, oh my gosh, we are going to figure out what's wrong, we're going to do it.

And he, and I, I told him, look, I've done a lot of research.

This is going to be one of two things.

I'm either having frontal lobe seizures, XYZ or I'm having what is called PNEs, psychological non epileptic seizures.

And I was like, and please, like, don't make me crazy, like I, I don't want to be crazy.

And he goes, I, regardless, you're not crazy, but I really think that you're correct.

It's not going to be pnes, it's going to be frontal lobe seizures.

Because everything is presenting in the same, the exact what it would look like and how you feel.

But as confident as he was, he did give us the option if we would like to do an at home EEG where they hook me up for five days and I'm on a camera, I'm on chest monitors, brain monitors, and basically just can't leave the house.

And I'm monitored on camera for five days, sleeping all the things.

Within those five days I had multiple seizures.

And so as frustrating as it was, it was good because now it's captured, the waves are being captured.

My, the image of what's happening to me is being captured.

So this is great.

I get sent off and evaluated and maybe, maybe seven days later, five, seven days later, I get the call that, hey, I got to see the episodes, I got to see the brain length and I have to say it's non epileptic seizures.

Non epileptic.

So what does that mean?

That means that there is nothing neurologically causing the seizures and that there's likely going to be a psychological cause.

And I said, okay, so you're telling me I'm crazy?

And he goes, you're not crazy.

This, I have seen it before.

And you know, I, I saw it like, you're not crazy.

It's, it's happening.

And he recommended that I go see a specific type of therapist to work on some psychological healing options.

So that news was devastating to me.

Like I, I literally cried non stop for days because I felt like, oh my gosh, I have been affected at this point.

For six months complete, like not driving, not feeling like I have a life for six months to be told that it's basically in my head, like that's, it's wild.

And in the time that we were waiting on a diagnosis, like, I was so depressed.

Also the seizure medicines don't, you know, really, you get really depressed.

And I remember I was recommended to get find some like seizure support groups and I did that on Facebook.

But every time I would see someone post and every time I would see something, I'd get angry.

Like, angry like you don't know what I'm going through.

Even though everyone's there because they have seizures.

Like you don't know what it's like.

Like you're, you know.

But that's not the case.

It's.

It's there for support because everyone's experiencing the same things.

And even more so after I got the diagnosis, I got even more angry with that group and was like, yeah, y'all don't know what I'm going through.

And I left the group and I just was in just this dark, dark hole.

I was so depressed, like crying all the time and just felt crazy.

And it was embarrassing.

It was embarrassing when people really close to me would, would know what I was actually diagnosed with and what that means.

So what that means is that they are psychological non epileptic seizures, meaning the.

And there's not a lot of knowledge on it.

So other than seeing a psychologist.

So I start seeing a psychologist that specializes and she can do emdr, which is most commonly known and a thing called brain spotting.

Brain spotting is what seemed less invasive and was highly recommended for me.

And so this sounds like all wild.

And we go see this therapist.

I just remember being like this ball.

Like I'm just on her couch profusely sweating, trembling and really crying the whole time during this intake.

Because I'm like, yeah, you can't help me.

Like, I'm just crazy.

I'm broken.

Like, I didn't.

This is stupid.

I don't know why I'm here.

And so she got to the point where she goes, would you be more comfortable if your husband was in here?

And I was like, yes, yes, yes, I would.

And so she called Simon and Simon sitting next to me and he just, you guys know if you, you've seen us together, like he can, he just puts his hand on my leg or something and like I can start like calming down and breathing.

And so she basically says, hey, like what I've already noticed in our intake from the forms that were pre filled out.

And from our conversation this hour, hour and a half, there's some significant traumas going on.

And that trauma gets to the point where it can just shut down the brain, which, I don't know, a lot of times it's not, we all know a fight flight freeze.

Right.

Well, there's also two others that I hadn't, I hadn't really ever heard before.

It's called Fawn and flop.

So that's also part of a trauma response.

My body definitely has gotten to the point where it flops.

So my brain is just as she described it.

It's like a ball of yarn and it's so, so tight that it can't work out any of the problems, any traumas.

It's just wound tight and it can't process anything else.

So if anything else goes wrong or if anything causes any sort of stress, the body flops, the brain turns off.

And so it felt good to hear, like, okay, it sounds like she knows what she's doing.

This brain spotting sounds insane.

But you know, I was so depressed, I was like, whatever, I'll, I'll do whatever.

I, at this point I just, I don't care.

I was off of the Keppra, off of the other seizure medicine, and now I was just on anxiety meds, which ended up getting like, bumped up to like the highest level that you can get.

And after, after about six months, maybe less actually.

I mean it might have been like four months of doing consistent brain spotting, which brain spotting is kind of where you go into this trans, like state.

You activate both sides of your brain and you allow yourself to go into this transformation type state where your vision kind of like just blurs out and your brain just starts playing things in your head.

So it could be, you know, the feeling of embarrassment.

Like that was really, really heavy for the first time.

Well, okay, like where is the feeling of embarrassment coming from and why?

So then you would do a brain spotting session where like that was the thought in your mind.

You go into this trans and like you're listening to like this music that activates both sides of your brain and you just start seeing.

At least for me, I think it's a little different for people, but for me I start seeing images and like just kind of seeing movies like play out in my head.

And the other unfortunate part is that afterwards I, I, it would, I would be a zombie for the next two days.

Like, because your brain, after you're doing a brain spotting session is still unwinding and working out everything that it was trying to process while you were in the brain spotting session.

So it was very hard.

And for the first while I just felt more and more depressed because it's so much, it's just so much.

So I keep up with the brain spotting because we did notice that slowly the seizures did stop because I was still having them.

And I am not so embarrassed about it anymore that I can't talk about it.

In fact, what I have learned is that I've learned a lot.

I was this diagnosis extremely embarrassing and extremely hard to accept and be okay working with.

Yes, but, but what Simon and I will both tell you is that it's honestly the best thing that has ever happened in our life because I'm going through this challenging health experience.

Simon had his own challenges on his side of the family.

That was really, really, if you know us, you know how very drama filled and drastic and problematic that was.

And we were going through this at the same time.

And I was able to be there for him as he's trying to process the major changes in his life as he's there for me going through the major changes and challenges in my life.

And it just brought us so close.

It brought us so much closer together.

We were both able to be there for each other.

So that above all has been what has been made this all just like really worth it.

As shitty as it as it is so psychological non epileptic seizures is oftentimes caused from a compound of trauma.

So the brain has so much trauma that has been unprocessed that it, it can't handle anymore.

The box is full, lid is exploding and there's.

You can't.

My temper was really short.

I think a lot of you would know that I had a short temper for a long time.

And it's because due to the brain not having enough space to process anything, if we get to a point where like oh, a cup of water spilt over.

Now I'm really angry because it's just another thing to figure out and process.

And it's not, that's not a normal reaction.

That is the reaction of someone who cannot process anything more that is going on in their life.

Any, any more stimulant, too many sounds on at once, you know, too much light to just all the things real quick to irritation and everything feels like the end of the world.

Brain spotting helped me overcome the challenge of these non epileptic seizures.

And actually what I've learned, which is why I thought that it was really, really important to share with you guys, is that epilepsy, like actual epilepsy, is misdiagnosed.

40% of the time.

40% of the time a person is not actually experiencing epileptic seizures.

They're actually experiencing pines psychological non epileptic seizures.

And so they will live on these medications and be misdiagnosed.

These like literally life changing, life altering things where you're unable to drive for months.

Every time you have a seizure, your brain's being literally affected, your personality is being literally altered with these seizure medications.

So you heard me, 40% is misdiagnosed.

The average of someone who is misdiagnosed stays misdiagnosed for eight and a half years, but most commonly 10 years.

So 10 years people will be on these medications that's just altering their mind and their personality and affecting how they can live their life and just controlling all these things.

And it's wild, it's wild, it's upsetting and it's because it's reversible.

When you have epilepsy, you can take medication, you'll likely be on medication the rest of your life.

But there's, that's your life.

Being diagnosed with the non epileptic seizures, there's psychology and therapies to help you make space to process what's going on.

And after a year of going through brain spotting and therapy, I, I want to say I never have any more seizures.

But that, that's not true.

But it's very, very rare.

You know, less, less often and I am a whole new person.

If you know me, you know, a lot of my basic life views have changed, a lot of my acceptance has changed.

Just my personality is so much more calm, so much more present and I just have so much room to learn who I am, which is why the podcast was created in the first place.

I felt like I didn't know who I was because all of my autonomy and all of my freedom had just been taken away from me and I already didn't know who I was.

I have been a mom and working 24 7, not 24 7, but you know what I mean, working full time jobs, I didn't know anything about myself.

And it's really easy for us to lose that and not even realize that we've lost it.

Can you right now tell me like what your favorite color is?

Can you tell me what your favorite style of clothing is?

Like that makes you actually feel good.

These, these are the things that I couldn't even answer.

And Melissa had made a comment that, oh, I've always wanted a podcast and I You know, kind of chuckled it off.

And then I go, well, I can't leave the house and talk to people any other way.

You want to do a podcast with me?

And she did.

So Skirts up was born.

And what happened with Skirts up being born is the other best thing that ever happened to me.

We started talking and meeting with so many different people.

And we used it as a space where we could just record ourselves learning about random shit like, oh, let's talk about tarot and look up what tarot is.

Let's, oh, there's this odd spiritual type of belief where, you know, there's spirit guides and stuff.

Let's learn about that.

And that just led into finding other people who do really believe other things than what I had ever heard of or known to be true.

It led to gaining more perspective and knowledge.

I mean, again, these are perspectives that I've never been exposed to before and never would have known existed.

And so just got, I just, it fed my natural thirst for knowledge.

And so just getting to meet more and more people, I actually found more and more of myself.

I actually have found a lifestyle that I'm, I love, I'm really comfortable with.

My marriage has become so much stronger because of my mind just being more open and receptive to change and things that are different.

And really, I mean, one of my biggest frustrations and why I felt like it wasn't worth being knowledgeable in like, one's, like a particular view or belief is because my brain just, it has a really hard time if something isn't exact.

So, you know, you could say, do you believe in all the rules and policies of, you know, the Mormon Church?

Or do you believe that, you know, you have a higher self and there's spirit guides helping you along the way?

Like, my brain would go, okay, I hear all the facts about living in the like.

As a Mormon, I understand how that can be comfortable for people and how that happens and also why people can, you know, leave the church and why they would.

Then I can also hear and feel validation from everything that someone says about spirit guides and you know, what, what that means.

And so then my brain would just get overloaded and be like, well, I don't know what I believe in.

And this is overwhelming because how can I believe in two things at once?

And one of the most mind changing, life changing phrases that was said to me by someone on the podcast, Kelly Palmeteer, was that it's okay to believe in everything and nothing at all.

And that's kind of been like my philosophy for, for many things.

And I go, oh man, is reincarnation real?

Like, I really think it is, but what if it's not real?

So what?

So what?

And it's okay to believe in all things and nothing at all.

I, it's, there's just so much to explore and I, I don't know, I don't really know what to tell you other than I have really enjoyed getting to know the person that I am today.

And it's been a journey.

And this podcast just keeps giving me purpose and giving me actual life goals and there's just an even higher and better me that I know that I can get to.

And life has just been great.

So I still have work to do.

I'm still in therapy.

I still have some random seizure episodes and there's a reason, usually something that my brain just again has a hard time processing because there's still some things that are, are yet to be processed and my brain flops.

We just know that's how I operate.

So like with Ada dying, I experienced a lot of flops.

It was really hard having that extreme change in my life.

So we've been getting over that and with that has on, has, has opened some more aspects of my life that have yet to have been worked out and you know, actually processed.

So now my brain has space to process that.

And so now it's just another wave of ups and downs and you know, experiencing really, really tough stuff inside of my head and having to talk about it and having to relive things and that really sucks.

But I know that after a while I'm going to be an even better person.

I'm going to be an even happier person.

I'm going to be an even more accepting person.

I'm going to be an even more lovable person.

I know I'm lovable right now, so don't, don't come at me.

But I can love myself more the more that I continue to grow.

And so of course that means that I'm able to accept myself or accept love from others a whole lot better and a whole lot more.

And I, I have a lot more love to, to accept and give and I look forward to, even though it's down right now, getting even better and seeing where I am in another year.

So I encourage you guys to really read up on trauma.

You know, actually, actually, you know what, I'll probably, we'll get a therapist on to talk about trauma and how it leads to non epileptic seizures.

It'd actually be really interesting to hear the professional perspective and not just my half memory of what I experienced and lived through, but also just really let the numbers sink in because it's, it's mind blowing.

40% of people who actually have non epileptic psychological seizures are misdiagnosed and live on these medications that make you a zombie and just limit your, your life and alter your brain for eight and a half to ten years.

It's wow.

If you are having seizures that have been unexplained and they can't find a cause and nothing's showing up on the scans, please, please, please, please, please demand an at home E to figure out what is actually happening.

Because if you can get on the scan having a seizure, like in the moment, like that's your answer.

Like your brain can't, you can't make up your brain waves to show something on the EEG that's not really there.

So if you're having an episode and nothing shows up, that's your answer.

You do not have epilepsy.

You, you have trauma and you need help and that's, that's okay.

And just know that once you do get help, your life becomes freer and you just start to love life a whole lot more.

So yeah.

Happy Mental Health Awareness month.

Take care of yourself.

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