May 8, 2025 • 54 mins
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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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:10):
If you got a problem, Lottie'sgot the answer?
She won't sugarcoat them?
Cause it's Lottie and Lottiedon't lie?
Cause it's Lottie and Lottiedon't lie.
Welcome to Lottie Don't Lie.
(00:30):
It's Samantha and Melissa.
And today our episode is alittle bit different.
When we play this recording,you'll notice that it is just me
talking because Melissa kindlylet me ramble on to myself about
my own story to you guys.
So it's definitely differentand interesting.
(00:52):
It's going to be really interesting.
I actually haven't heard ityet myself either, guys.
It's just one of those thingswhere Sam needed space.
She wanted space to, like,tell her story.
So I cannot wait to hear herstory and receive it.
So thank you for sharing.
Yeah, of course.
It was kind of hard.
(01:13):
One, because it is, like,super personal.
Two, I did get emotional atsome point in it, and so I'm embarrassed
about that.
But three, there is somestatistics in it that are very important
and need to be more known.
So that's.
Honestly, if the statisticsare what gets out, then it's worth
it.
And if people start gettingdiagnosed correctly, like, it's worth
(01:36):
it.
That's.
Yeah.
I'm really actually anxious tohear it all now.
But it's because it's MentalHealth 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.
(01:57):
Yeah, it gets.
It gets deep.
But I don't want you to be embarrassed.
They got emotional.
I feel like that's what cankind of like, bond us all together
is like, knowing that we'veall been through some shit.
Right?
That is true.
It's the vulnerability that'skind of.
Kind of why we're here, Right?
Exactly.
It's exactly why we're here.
So.
Which you guys might actuallyfind really funny, the fail that
(02:22):
happened today.
So Melissa and I are gettingready to record, and it took 30 minutes
of me going back and forth inmy 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 adocumentary that I'm working on and
(02:43):
creating.
Deadlines for school that I'min, deadlines for the podcast, and,
like, they're all blurched.
Together in my brain.
And I'm at the point whereit'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 tookus 30 minutes to remember what we're
recording right now.
And that is okay.
I just wish I could havehelped more.
(03:03):
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, becausethere 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, maybeI should have been able to help.
No, wait, I couldn't have.
(03:24):
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 thecalendar and I'm like, no, like what
you're saying.
I think we're fine.
And then she's like, oh, butactually, we have to have everything
to this one person by this date.
Oh, okay.
(03:44):
That's why we need to getahead 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 socute, but it's.
This was so funny.
(04:05):
So it's not a fail per se, atleast, but it's just like a wild
little story.
We went out to eat tobreakfast one morning, and actually
it was me and Brett and Jacob,and we were at anyway, a breakfast
diner in Cumming, Georgia, andI asked for water with no ice.
(04:29):
And the little waiter, he waslike a 16 year old boy probably.
He was like, oh, I don't knowif I can bring you water without
ice.
And I was like, oh, that's weird.
I said, well, I just, youknow, I don't.
Sometimes I feel like whenit's cold, I can't drink.
Like, I don't drink as muchwater as I should because it's just
(04:50):
too cold.
And he was like, yeah, I thinkthere are health benefits to drinking
warm water.
Okay, I got you.
So he came back and he had amug of hot, hot coffee water with
no coffee in it, just hotwater, boiling water, kind of.
And then he had a glass thathad ice water in it.
(05:13):
And he's like, so.
And Then he brought me anempty glass, and he wanted me to
pour them together so that thewater 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 thoughtmaybe he's just pranking me.
But he was very serious, andhe just didn't realize that he could
(05:35):
just get me some water with noice in it, just regular water.
And I guess he thought it hadto be, like, you know, hot from the
coffee thing or ice water.
And so it just.
It makes me think that heprobably is just one of those people
that does something the sameway every single time.
And then when that routinegets thrown off, it's like, oh, I
(05:58):
can't do that.
And exactly.
Like, you're like, oh, wait,like, I can.
But, like, it's hard for themto 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.
(06:19):
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 cutebecause we were ordering.
Jacob ordered eggs, and hegoes, you know, I've never really
(06:39):
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'snot 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, afew months later, and he was still
(07:00):
there, so I was very happy.
Yay.
But he was you, kiddo.
Yeah.
But he had lost some of hisnaivete, because when he served,
he didn't remember me oranything, 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.
(07:23):
You were just a little baby.
Oh, man.
I still have, like.
Like, go.
Oh.
Like, at the thought of beinga server, like, it's a lot for just
days.
I never want to do it againever, ever, ever.
I feel like I would rather be, like.
I'd rather be, like, workingin a landfill before being a server.
(07:45):
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.
(08:11):
Hey, squad.
It is Samantha, and I am solotoday for Lottie.
Don't lie.
Melissa has graciously let merun today's show as I share with
you guys my personal mentalhealth story.
So this is very personal, andnot most people don't know what has
(08:37):
been going on with me and whatI have been working through the last
year.
So I've decided that sinceit's Mental Health Awareness month,
and the statistics that I'mgoing to share with you guys are
so shocking that I felt like,how could I not share with you guys
(08:58):
what I've been struggling withbecause it's significantly impacting
so many people around us thatI've learned you each probably know
multiple people that actuallystruggle with the same thing.
So are you ready?
Let's do this.
Okay.
(09:18):
So when we started thispodcast, do you guys.
For those who don't remember,you know, when we started.
I'll just kind of recap.
Melissa and I started thispodcast shortly after I had started
experiencing seizures.
Let me just paint the picturefor you.
So I'm on my dream vacation with.
(09:41):
With my husband Simon.
We're in Costa Rica.
Costa Rica had been one of theplaces that we had been trying to
visit four times, and it keptgetting canceled as we'd get ready
to go.
Either, like, one time we madeit to the airport, we made it on
the plane, and then the planejust, like, was broke.
(10:02):
Broke after three hours ofsitting on this empty plane.
And so we had to get off, andwe weren't able to go.
Another time, the flight justin general got canceled, and there
was no other flights that wereavailable for us.
Gosh.
Covid.
Covid hit.
And then that canceled one ofour trips.
Like, we just.
We kept trying, and it keptnot happening.
(10:24):
And so just the desire to gogot stronger and stronger.
And why I wanted to go isbecause Costa Rica, one has all different
types of environments to explore.
Like, I mean, there'sliterally a jungle, there's mountains,
there's the ocean, and there'sjust a whole lifestyle to explore
(10:44):
over there.
And one of the things that Ireally have enjoyed doing is reading
about whales and their migration.
And I was particularly drawnto the humpback whale migration.
And there's a little towncalled Uvita that a lot of people
haven't really heard of inCosta Rica.
It's not often.
It's not really traveled that Much.
And it's got this beach that'scalled the Whale Whale's Tail.
(11:07):
And it's known for being wherethe humpback whales go to give birth
and teach their babies tosurface and breathe.
And that is just somethingthat I really, really wanted to see.
So Simon and I finally make itto Costa Rica after.
I mean, I literally think thisis like our fifth try, and we finally
(11:30):
make it to Costa Rica.
And the first two days, we arejust not getting along at all.
Little did each of us know, weboth 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 thedream trip and it felt miserable.
(11:52):
So let's.
I think we were two days intothe trip, maybe, maybe three, and
it was our day to go onto theboat 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.
(12:12):
I think like a storm wasrolling 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 ofyour seat and, like, hard to.
And, you know, it was okay.
(12:33):
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 ofthe boat too.
So it's like the worst part.
It's the part where you'regetting hit the most.
You're experiencing, like, themotions 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 fora mom whale and baby and.
And there's one.
(12:53):
So we're all surrounded,basically, this.
This mom whale with its baby whale.
And I just remember just thisbig emotional release.
Like just these chills cameover my body.
I'm looking at the mom whale.
Like, tears start coming outof my eyes.
And I just look at Simon, Igo, this was worth it.
This.
This was amazing.
This is worth the wait.
(13:14):
This is everything I wanted.
And next thing I know, wherewere heading back to the beach.
I.
I literally don't recall fromthat moment back to us getting back
to shore.
(13:35):
And apparently that's when Iexperienced my first seizure.
And that was really scary.
Of course, for Simon, youknow, he doesn't know what's going
on.
He that was, that was a scaryexperience for him.
And I can only imagine.
I don't know how I wouldhandle that and what I would do in
that situation.
(13:55):
So in a selfish way, I'm kindof thankful that it wasn't the other
way around because I don'tknow what I would do.
So we get to shore, he helpsme kind of recoup.
I think I remember someonegiving me like juice and I remember
we got like a snack and wewent back and we.
(14:18):
Over the next couple days, itjust something.
It kept happening and then Iwould 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 firstseizure, I woke up that day and everything
(14:42):
fell off.
And when I say everything felloff, I mean like my surroundings
felt like they were movingkind 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, mysurroundings are just.
Everything's moving in adifferent wavelength and it just.
(15:04):
I knew I didn't feel right andI knew that I was moving slower than
usual.
And then the episode happens.
So as they keep happening eachday that we're on the trip, thankfully
we're still able to enjoy alot of the things that we wanted
to experience.
But it was challenging becauseI would have an episode and then
I'd have to sleep for a littlebit and it would just take me a while
(15:25):
to get back into a normalgroove and just be present again.
But they, I, I typically wouldfeel 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.
(15:45):
The environment starts moving.
I realize I can't hear what'sexactly going on around me.
Everything just kind of turnsinto noise.
And I'm not hearing and seeingthings like as they're happening.
It's like, it's very delayed.
What else happens?
I remember the final, thefinal thing is I remember feeling
like, oh, fight this, fight this.
(16:05):
You got this, you got this.
But it would feel like my headwould just get heavy.
And once I knew, like once Iwould feel that my head gets heavy,
we learned that that's likegame over.
Once the head gets heavy and Ifeel like I can't hold it up, there's
going to be a seizure and I'mgoing to be out for a little bit.
And he.
(16:26):
Simon was so caring.
Like, he took so such goodcare of me.
Even though we each thought,like, oh, we're gonna go home and
get divorced, like, he.
He really cared and he reallytook care of me and helped keep me
calm.
And I remember we were sittingat dinner one of the last nights
that we were there, and hejust looks at me and he starts crying
(16:47):
and he was like, this has beenthe most scariest thing I've ever
experienced.
And I just love you so much.
And I just.
I, like, can't imagineanything happening to you, so we
need to figure out what's wrong.
And.
And I remember just beinglike, wow, I needed to hear that.
Like, I really needed to hearthose words.
I really thought that we werejust on total different planes.
And it just.
(17:08):
I didn't see another option Iwasn't getting.
I wasn't feeling the love thatI needed and the attention that I
needed.
And here I am experiencing,like, one of the, like, scariest
points in my life and werefeeling love for each other and being
able to express it.
And it was definitely a bigturning point for us.
(17:31):
So we got back into the UnitedStates and, you know, Simon was like,
hey, if you have another onewhen we get into the States, like,
we need to go to the hospital.
We didn't go to the hospitalwhile we were in Costa Rica.
One because we weren't exactlysure what was going on.
I mean.
(17:52):
Yeah, we weren't sure what wasgoing on.
I mean, you're.
You're in another country, andI don't know what you guys have experienced,
but when you go to anothercountry like Costa Rica, Jamaica,
things like that, the foodtastes different, it's made different.
It doesn't have all the thatis in our food.
So you like, the tastes areall different.
(18:13):
I still swear I don't.
My kids don't believe me, butI swear, like, the bananas in Costa
Rica are so good and theytaste so different than the bananas
that we have at home.
And it's really like the foodis just more natural.
They don't have crap in them.
And so we really were thinkingthat I was having just some sort
of, like, sugar crash, havingless sugar in my food and less crap
(18:37):
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 happenanymore once we get back to a normal
diet.
So we thought, no big deal.
Like, let's just get the tripover with.
We get home, and it was thatnext morning that we were home is
when all the feelings startedcoming again and I had a seizure.
(18:59):
And when I have one of theseseizures, you know, again, I, like,
I don't obviously, really knowwhat'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, closetogether, and my eyes are fluttering,
(19:22):
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 hardtime staying awake.
(19:43):
So, like, I'm constantlyneeding, like, falling asleep to
take like, a little nap orsomething, 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 thesestarted, like, hot, hot summer, and,
like, uncontrollably cold towhere, like, even though the environment
(20:04):
is hot, like, I'm bundled inblankets and hoodies, like, trying
to keep myself warm because Ilike, my body just, for some reason,
can't feel warmth.
So, of course, all of thesesymptoms really do lead to a seizure.
They're classic simples, youknow, classic signs of a seizure
(20:26):
down to biting your tongue andyour tongue being swollen.
So when it happens, when weget back that first morning back
in.
Back at home, back in the USit happens again.
And I think my mom had had thekids the whole time we were gone,
so we felt bad.
And Simon called his mom tocome get Nora.
(20:49):
I think the big kids werestill with their dad or something,
and obviously a lot of this isstill a blur, but we'll get.
We'll get to the point, I promise.
So I remember we get to thehospital, and because we had been
out of the country, we gotquarantined, which actually was kind
(21:10):
of one of the funny, coolest things.
It's just like Grey's Anatomywhen you watch someone get quarantined
and you're in this, like, bigglass room with, like, sliding doors,
and all the nurses and doctorsthat 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 neverhad faster care in a hospital than
(21:32):
I did coming back from Costa Rica.
I mean, we were immediately ina room, immediately being treated.
It was great.
It was, you know, if you'regonna go to the hospital?
Maybe, maybe just say you'vebeen 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 theseblood tests and I remember they were,
(21:54):
I'm really hard to get acatheter in like for blood.
And I remember that was one ofthe first things that they did is
they wanted to make sure thatthey had a catheter access in, in
case I started having aseizure again.
And I, while they were gettingthe catheter in, all the feelings
started coming and I startedwarning them, like, hey, like I'm
starting to feel all the things.
And then once my head startedgetting heavy, Simon, you know, told
(22:17):
them, hey, like you gotseconds, like she's about to have
one.
And so I remember they likefinished the catheter really fast.
They injected this medicationthat I guess like stops seizures.
And I remember this wave, likethis just like warm wave just filling
(22:38):
my whole body.
Like my chest felt hot andheavy and just as hot and heavy is
running down my whole body.
And at this point they'regetting ready to transfer us into
a room because they'vedecided, you know, I'm probably not
going to kill people frombeing in Costa Rica.
So they're willing us toanother room.
And I, I really think I'mhaving a heart attack and I'm dying.
(22:59):
Like I just, I feel like Ican't breathe.
And everyone's like, no, youknow, your heart rate's normal, your
oxygen is normal, like you're fine.
And I'm just wide eyedthinking, this is it, I'm about to
die.
I know, I don't know what, Idon'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, emergencylike antianxiety injection or something
(23:23):
and the feeling went away.
So I wasn't dying.
I guess, I guess that's likean intense panic attack.
So that's good.
I get scheduled an eeg.
So an EEG is when they attachall those little wires to your head
and they can pick up on thebrain wavelengths.
Like you can see if you move a finger.
(23:44):
Like you see like wave changeson this machine.
And a lot of times when theyhook them up, you, you can see if
someone has had a seizurebecause it'll be like some abnormal
tease in the line.
But sometimes not, sometimesit doesn't show up.
So when I had mine, I had twothe first one was inconclusive.
My I have a lot of hair and soapparently it didn't connect right.
(24:07):
And so they came back the nextday and they did another one.
That one came up with no abnormalities.
So no answers onto what wasgoing on.
I had a, an MRI or a CAT scan.
I can't remember which one'swhich, so I don't know the difference.
But I remember going into thismachine and having like a scan in
my head and there was nothingthere like that could cause like
(24:30):
a seizure.
So that was good.
But blood work was all normal.
We did all sorts of tests.
They even did a spinal tap andI really did not want to do that
but they couldn't find anyanswers and they were like, you know,
this really, really, reallycould 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 Idid it.
(24:52):
I actually passed out duringthe spinal tap.
I1 I don't do needles verywell and I think I just worked myself
out and I passed out during it.
But I remember like being ableto hear and then her saying oh, she's
out and then waking back upand I'm like laying back down flat.
And I was like, well I toldyou guys I'd probably pass out.
(25:13):
I passed out.
When my blood's drawn, it'sjust, just a whole thing.
So I was in the hospital forfive days.
I had like just numerous tests run.
Nothing was coming up.
When I left the hospital, Ileft on anti seizure medications,
Keppra and on a anxietymedication that doubles as like a
(25:40):
antihistamine.
If I remember correctly.
It was a really, it was odd.
And Trazodone I believe I leftthe hospital with.
Yes I did because I, yes, Iwas having a hard time sleeping and
I was so like overwhelmed.
(26:00):
Regardless, I leave thehospital on, on a handful of meds
and their you know,recommendation is stay on this medication,
this anti seizure medicationand get in with a neurologist when
you can.
Being on Keppra, I know thatsome people have been on Keppra and
like have felt okay.
But there is wow.
(26:24):
So kepper your brain and yourbody has to get used to it.
So when you start takingKeppra you are.
I was high as a kite is what Iguess 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.
(26:46):
I would forget what I was doing.
I would forget if I Took my meds.
When I took my meds, there wasdefinitely a few days where I doubled
up on my meds because I wouldtake them, and then poof.
Am I holding my bottle becauseI just took them, or am I holding
my bottle because I'm about totake them?
(27:06):
That's how bad it was.
Now I know that that is a verycommon side effect with Keppra.
It really clouds your memory.
Not even just when you starttaking it, but long term, it affects
your memory.
So I did learn that there'speople that would have family members
that have seizures and onKeppra, and they were like, yeah,
(27:27):
no, that's really common.
Like, we have to do thisreally strict medication tracking
system because they will justbe looking at their pills and can't
remember if they just tookthem or were about to.
I was like, great.
Okay, well, that's good.
Good to know.
Kepper is also a very big sideeffect of it is rage.
(27:48):
And that is definitelysomething that I did not want to
experience.
Fortunately, I don't feel likeI ever got the Kepper rage because
I didn't take it for too long.
It was only maybe two weeksbefore we did go to the neurologist.
And she.
I remember we felt like, okay,she's gonna figure out what's going
(28:10):
on.
But what she did is she satwith us for maybe about 30 minutes
and then basically just kindof shook up all my meds.
She wanted to wean off aKepper and put me on this other one.
And I think it started with anL, but I can't remember what it was
anymore.
And she, like, upped myanxiety and changed my anxiety meds,
(28:33):
and I can't even tell you anymore.
Basically shook up my meds.
But ultimately she ended uphaving me.
She.
I remember the goal was towean me off Keppra, but she ended
up having me on Kepper andthis other anti seizure.
So I was on two anti seizuresat one point because she ended up
(28:54):
deciding to keep me on both ofthem on top of the anxiety medicine,
which I think is what I stilltake today, anti anxiety and depression.
So we follow up after threemonths of her changing things up.
And what we remember from thatappointment is that in three months,
we would check up, see what'sbeen going on.
(29:14):
Has there been any more seizures?
And then start doing whateverwe could to figure out the cause.
How can we get rid of them?
Because every time I'm havinga seizure, I can't drive.
I can't drive for six months.
And so at that point, by timewe had seen her, I had still had
a seizure since the hospital.
(29:35):
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 hadbeen provoked it until well into
(29:57):
the next year.
So that's also really stressful.
I have kids to drive around.
Being on the Keppra, it, itjust affects your brain so much too
that I couldn't function andno one really knew what was causing
the seizures and when theywould happen.
And so my mom was at my houseevery day, like basically taking
care of me and Nora because Iwas a ticking time mom, couldn't
(30:21):
leave the house, didn't knowwhat was going on half the time.
So we go to the doctor and shespends five minutes with us in the
room at our follow upappointment and says, great, stay
on these meds.
You know, we'll see you, we'llsee in a while.
And I, I think, let me correct.
I don't think we, we did.
We saw her in a month afterbeing on the meds.
(30:41):
Not, not multiple months.
It was, we saw her about amonth after the initial med change
and meeting her, saw her forthe five minutes and then she was
like, all right, cool, we'llsee 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 wasto figure out.
(31:01):
And she was like, well, themeds have improved it.
Maybe not perfectly, but theyhave improved it.
So let's just stay on the medsand we'll reevaluate in six months.
I remember just kind of beinglike numb and not.
I don't think I really had an opinion.
And Simon was very, very, veryadamant that that's not acceptable
(31:22):
and that's not what we're doing.
We're going to know what'sgoing on and we're going to figure
out how to solve it.
And so I'm really thankfulthat he is, you know, just when he
wants something, he's going tofind a way to get it.
And that's just how he is.
And so he wanted to know whatwas wrong with me and he wanted to
help me get better.
So we talk to friends and wefind other neurologists that we know,
(31:43):
people that have used them andwe, that was probably a few months,
a couple months.
Few months.
Definitely.
I mean, probably within twomonths or whatever of seeing that
Last doctor we see, the new,this, this neurologist and he spends,
I mean, an hour and a half inthe room with us for our first appointment,
(32:04):
going over each symptom, likewhat happened, like history, like,
what does it look like, whatdoes it feel like?
Like just all these things.
And I remember in thatappointment just feeling like, oh
my gosh, we are going tofigure 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.
(32:25):
I'm either having frontal lobeseizures, XYZ or I'm having what
is called PNEs, psychologicalnon 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
(32:47):
that you're correct.
It's not going to be pnes,it's going to be frontal lobe seizures.
Because everything ispresenting in the same, the exact
what it would look like andhow you feel.
But as confident as he was, hedid give us the option if we would
like to do an at home EEGwhere they hook me up for five days
(33:09):
and I'm on a camera, I'm onchest monitors, brain monitors, and
basically just can't leave the house.
And I'm monitored on camerafor five days, sleeping all the things.
Within those five days I hadmultiple seizures.
And so as frustrating as itwas, it was good because now it's
(33:31):
captured, the waves are being captured.
My, the image of what'shappening to me is being captured.
So this is great.
I get sent off and evaluatedand maybe, maybe seven days later,
five, seven days later, I getthe call that, hey, I got to see
the episodes, I got to see thebrain length and I have to say it's
(33:56):
non epileptic seizures.
Non epileptic.
So what does that mean?
That means that there isnothing neurologically causing the
seizures and that there'slikely going to be a psychological
cause.
And I said, okay, so you'retelling me I'm crazy?
(34:18):
And he goes, you're not crazy.
This, I have seen it before.
And you know, I, I saw itlike, you're not crazy.
It's, it's happening.
And he recommended that I gosee a specific type of therapist
to work on some psychologicalhealing options.
(34:41):
So that news was devastatingto me.
Like I, I literally cried nonstop for days because I felt like,
oh my gosh, I have beenaffected at this point.
For six months complete, likenot driving, not feeling like I have
a life for six months to betold that it's basically in my head,
(35:08):
like that's, it's wild.
And in the time that we werewaiting on a diagnosis, like, I was
so depressed.
Also the seizure medicinesdon't, you know, really, you get
really depressed.
And I remember I wasrecommended to get find some like
seizure support groups and Idid that on Facebook.
(35:29):
But every time I would seesomeone post and every time I would
see something, I'd get angry.
Like, angry like you don'tknow what I'm going through.
Even though everyone's therebecause 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 becauseeveryone's experiencing the same
(35:50):
things.
And even more so after I gotthe 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 Ijust was in just this dark, dark
hole.
I was so depressed, likecrying all the time and just felt
crazy.
And it was embarrassing.
It was embarrassing whenpeople really close to me would,
(36:14):
would know what I was actuallydiagnosed with and what that means.
So what that means is thatthey are psychological non epileptic
seizures, meaning the.
And there's not a lot ofknowledge on it.
So other than seeing a psychologist.
So I start seeing apsychologist that specializes and
(36:37):
she can do emdr, which is mostcommonly known and a thing called
brain spotting.
Brain spotting is what seemedless invasive and was highly recommended
for me.
And so this sounds like all wild.
And we go see this therapist.
I just remember being likethis ball.
(36:57):
Like I'm just on her couchprofusely sweating, trembling and
really crying the whole timeduring this intake.
Because I'm like, yeah, youcan'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 pointwhere she goes, would you be more
comfortable if your husbandwas in here?
And I was like, yes, yes, yes,I would.
And so she called Simon andSimon sitting next to me and he just,
(37:20):
you guys know if you, you'veseen us together, like he can, he
just puts his hand on my legor 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 formsthat were pre filled out.
And from our conversation thishour, hour and a half, there's some
(37:42):
significant traumas going on.
And that trauma gets to thepoint where it can just shut down
the brain, which, I don'tknow, a lot of times it's not, we
all know a fight flight freeze.
Right.
Well, there's also two othersthat I hadn't, I hadn't really ever
heard before.
(38:02):
It's called Fawn and flop.
So that's also part of atrauma response.
My body definitely has gottento the point where it flops.
So my brain is just as shedescribed it.
It's like a ball of yarn andit's so, so tight that it can't work
out any of the problems, any traumas.
It's just wound tight and itcan't process anything else.
So if anything else goes wrongor if anything causes any sort of
(38:26):
stress, the body flops, thebrain 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 sodepressed, I was like, whatever,
I'll, I'll do whatever.
I, at this point I just, Idon't care.
I was off of the Keppra, offof the other seizure medicine, and
(38:48):
now I was just on anxietymeds, which ended up getting like,
bumped up to like the highestlevel that you can get.
And after, after about sixmonths, maybe less actually.
(39:09):
I mean it might have been likefour months of doing consistent brain
spotting, which brain spottingis kind of where you go into this
trans, like state.
You activate both sides ofyour brain and you allow yourself
to go into this transformationtype state where your vision kind
of like just blurs out andyour brain just starts playing things
(39:30):
in your head.
So it could be, you know, thefeeling of embarrassment.
Like that was really, reallyheavy for the first time.
Well, okay, like where is thefeeling of embarrassment coming from
and why?
So then you would do a brainspotting session where like that
was the thought in your mind.
(39:52):
You go into this trans andlike you're listening to like this
music that activates bothsides of your brain and you just
start seeing.
At least for me, I think it'sa little different for people, but
for me I start seeing imagesand like just kind of seeing movies
like play out in my head.
And the other unfortunate partis that afterwards I, I, it would,
(40:14):
I would be a zombie for thenext two days.
Like, because your brain,after you're doing a brain spotting
session is still unwinding andworking out everything that it was
trying to process while youwere in the brain spotting session.
So it was very hard.
And for the first while I justfelt more and more depressed because
it's so much, it's just so much.
(40:40):
So I keep up with the brainspotting because we did notice that
slowly the seizures did stopbecause I was still having them.
And I am not so embarrassedabout it anymore that I can't talk
about it.
(41:01):
In fact, what I have learnedis that I've learned a lot.
I was this diagnosis extremelyembarrassing and extremely hard to
accept and be okay working with.
(41:22):
Yes, but, but what Simon and Iwill both tell you is that it's honestly
the best thing that has everhappened in our life because I'm
going through this challenginghealth experience.
(41:45):
Simon had his own challengeson his side of the family.
That was really, really, ifyou know us, you know how very drama
filled and drastic andproblematic that was.
And we were going through thisat the same time.
And I was able to be there forhim as he's trying to process the
major changes in his life ashe's there for me going through the
(42:10):
major changes and challengesin my life.
And it just brought us so close.
It brought us so much closer together.
We were both able to be therefor each other.
So that above all has beenwhat has been made this all just
like really worth it.
As shitty as it as it is sopsychological non epileptic seizures
(42:34):
is oftentimes caused from acompound of trauma.
So the brain has so muchtrauma that has been unprocessed
that it, it can't handle anymore.
The box is full, lid isexploding and there's.
You can't.
My temper was really short.
I think a lot of you wouldknow that I had a short temper for
(42:56):
a long time.
And it's because due to thebrain not having enough space to
process anything, if we get toa point where like oh, a cup of water
spilt over.
Now I'm really angry becauseit's just another thing to figure
out and process.
And it's not, that's not anormal reaction.
That is the reaction ofsomeone who cannot process anything
(43:19):
more that is going on in their life.
Any, any more stimulant, toomany sounds on at once, you know,
too much light to just all thethings real quick to irritation and
everything feels like the endof the world.
Brain spotting helped meovercome the challenge of these non
epileptic seizures.
(43:40):
And actually what I'velearned, which is why I thought that
it was really, reallyimportant to share with you guys,
is that epilepsy, like actualepilepsy, is misdiagnosed.
40% of the time.
40% of the time a person isnot actually experiencing epileptic
(44:01):
seizures.
They're actually experiencingpines psychological non epileptic
seizures.
And so they will live on thesemedications and be misdiagnosed.
These like literally lifechanging, life altering things where
you're unable to drive for months.
Every time you have a seizure,your brain's being literally affected,
(44:22):
your personality is beingliterally altered with these seizure
medications.
So you heard me, 40% is misdiagnosed.
The average of someone who ismisdiagnosed stays misdiagnosed for
eight and a half years, butmost commonly 10 years.
So 10 years people will be onthese medications that's just altering
(44:48):
their mind and theirpersonality and affecting how they
can live their life and justcontrolling all these things.
And it's wild, it's wild, it'supsetting and it's because it's reversible.
When you have epilepsy, youcan take medication, you'll likely
(45:10):
be on medication the rest ofyour life.
But there's, that's your life.
Being diagnosed with the nonepileptic seizures, there's psychology
and therapies to help you makespace to process what's going on.
And after a year of goingthrough brain spotting and therapy,
(45:33):
I, I want to say I never haveany more seizures.
But that, that's not true.
But it's very, very rare.
You know, less, less often andI am a whole new person.
If you know me, you know, alot of my basic life views have changed,
(45:53):
a lot of my acceptance has changed.
Just my personality is so muchmore calm, so much more present and
I just have so much room tolearn who I am, which is why the
podcast was created in thefirst place.
I felt like I didn't know whoI was because all of my autonomy
(46:14):
and all of my freedom had justbeen taken away from me and I already
didn't know who I was.
I have been a mom and working24 7, not 24 7, but you know what
I mean, working full timejobs, I didn't know anything about
myself.
And it's really easy for us tolose that and not even realize that
we've lost it.
Can you right now tell me likewhat your favorite color is?
(46:37):
Can you tell me what yourfavorite style of clothing is?
Like that makes you actuallyfeel good.
These, these are the thingsthat I couldn't even answer.
And Melissa had made a commentthat, oh, I've always wanted a podcast
and I You know, kind ofchuckled it off.
And then I go, well, I can'tleave the house and talk to people
(46:59):
any other way.
You want to do a podcast with me?
And she did.
So Skirts up was born.
And what happened with Skirtsup being born is the other best thing
that ever happened to me.
We started talking and meetingwith so many different people.
(47:20):
And we used it as a spacewhere we could just record ourselves
learning about random shitlike, oh, let's talk about tarot
and look up what tarot is.
Let's, oh, there's this oddspiritual type of belief where, you
know, there's spirit guidesand stuff.
Let's learn about that.
And that just led into findingother people who do really believe
(47:43):
other things than what I hadever heard of or known to be true.
It led to gaining moreperspective and knowledge.
I mean, again, these areperspectives that I've never been
exposed to before and neverwould have known existed.
And so just got, I just, itfed my natural thirst for knowledge.
(48:05):
And so just getting to meetmore and more people, I actually
found more and more of myself.
I actually have found alifestyle that I'm, I love, I'm really
comfortable with.
My marriage has become so muchstronger because of my mind just
being more open and receptiveto change and things that are different.
(48:27):
And really, I mean, one of mybiggest frustrations and why I felt
like it wasn't worth beingknowledgeable in like, one's, like
a particular view or belief isbecause my brain just, it has a really
(48:50):
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, theMormon Church?
Or do you believe that, youknow, you have a higher self and
(49:10):
there's spirit guides helpingyou along the way?
Like, my brain would go, okay,I hear all the facts about living
in the like.
As a Mormon, I understand howthat can be comfortable for people
and how that happens and alsowhy people can, you know, leave the
church and why they would.
Then I can also hear and feelvalidation from everything that someone
(49:32):
says about spirit guides andyou know, what, what that means.
And so then my brain wouldjust get overloaded and be like,
well, I don't know what Ibelieve in.
And this is overwhelmingbecause how can I believe in two
things at once?
And one of the most mindchanging, life changing phrases that
was said to me by someone onthe podcast, Kelly Palmeteer, was
(49:54):
that it's okay to believe ineverything and nothing at all.
And that's kind of been likemy philosophy for, for many things.
And I go, oh man, isreincarnation real?
Like, I really think it is,but what if it's not real?
So what?
So what?
And it's okay to believe inall things and nothing at all.
I, it's, there's just so muchto explore and I, I don't know, I
(50:20):
don't really know what to tellyou other than I have really enjoyed
getting to know the personthat I am today.
And it's been a journey.
And this podcast just keepsgiving me purpose and giving me actual
life goals and there's just aneven higher and better me that I
(50:44):
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 randomseizure episodes and there's a reason,
(51:05):
usually something that mybrain just again has a hard time
processing because there'sstill 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, Iexperienced a lot of flops.
It was really hard having thatextreme change in my life.
(51:27):
So we've been getting overthat and with that has on, has, has
opened some more aspects of mylife that have yet to have been worked
out and you know, actually processed.
So now my brain has space toprocess that.
And so now it's just anotherwave of ups and downs and you know,
(51:50):
experiencing really, reallytough stuff inside of my head and
having to talk about it andhaving to relive things and that
really sucks.
But I know that after a whileI'm going to be an even better person.
I'm going to be an evenhappier person.
I'm going to be an even moreaccepting person.
I'm going to be an even morelovable person.
(52:11):
I know I'm lovable right now,so don't, don't come at me.
But I can love myself more themore that I continue to grow.
And so of course that meansthat I'm able to accept myself or
accept love from others awhole lot better and a whole lot
more.
And I, I have a lot more loveto, to accept and give and I look
(52:33):
forward to, even though it'sdown right now, getting even better
and seeing where I am inanother year.
So I encourage you guys toreally read up on trauma.
You know, actually, actually,you know what, I'll probably, we'll
(52:58):
get a therapist on to talkabout trauma and how it leads to
non epileptic seizures.
It'd actually be reallyinteresting to hear the professional
perspective and not just myhalf memory of what I experienced
and lived through, but alsojust really let the numbers sink
in because it's, it's mind blowing.
40% of people who actuallyhave non epileptic psychological
(53:20):
seizures are misdiagnosed andlive on these medications that make
you a zombie and just limityour, your life and alter your brain
for eight and a half to ten years.
It's wow.
If you are having seizuresthat have been unexplained and they
can't find a cause andnothing's showing up on the scans,
(53:41):
please, please, please,please, please demand an at home
E to figure out what isactually happening.
Because if you can get on thescan having a seizure, like in the
moment, like that's your answer.
Like your brain can't, youcan't make up your brain waves to
(54:02):
show something on the EEGthat's not really there.
So if you're having an episodeand nothing shows up, that's your
answer.
You do not have epilepsy.
You, you have trauma and youneed help and that's, that's okay.
And just know that once you doget help, your life becomes freer
(54:23):
and you just start to lovelife a whole lot more.
So yeah.
Happy Mental Health Awareness month.
Take care of yourself.
Did you like the episode thatyou heard today?
Great.
Share it with a friend anddon't forget to rate and review.
If you got a problem, Lottie'sgot the answer?
She won't sugarcoat them?
Cause it's Lottie and Lottiedon't lie?
Cause it's Lottie and Lottiedon't lie.
Welcome to Lottie Don't Lie.
(00:30):
It's Samantha and Melissa.
And today our episode is alittle bit different.
When we play this recording,you'll notice that it is just me
talking because Melissa kindlylet me ramble on to myself about
my own story to you guys.
So it's definitely differentand interesting.
(00:52):
It's going to be really interesting.
I actually haven't heard ityet myself either, guys.
It's just one of those thingswhere Sam needed space.
She wanted space to, like,tell her story.
So I cannot wait to hear herstory and receive it.
So thank you for sharing.
Yeah, of course.
It was kind of hard.
(01:13):
One, because it is, like,super personal.
Two, I did get emotional atsome point in it, and so I'm embarrassed
about that.
But three, there is somestatistics in it that are very important
and need to be more known.
So that's.
Honestly, if the statisticsare what gets out, then it's worth
it.
And if people start gettingdiagnosed correctly, like, it's worth
(01:36):
it.
That's.
Yeah.
I'm really actually anxious tohear it all now.
But it's because it's MentalHealth 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.
(01:57):
Yeah, it gets.
It gets deep.
But I don't want you to be embarrassed.
They got emotional.
I feel like that's what cankind of like, bond us all together
is like, knowing that we'veall been through some shit.
Right?
That is true.
It's the vulnerability that'skind of.
Kind of why we're here, Right?
Exactly.
It's exactly why we're here.
So.
Which you guys might actuallyfind really funny, the fail that
(02:22):
happened today.
So Melissa and I are gettingready to record, and it took 30 minutes
of me going back and forth inmy 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 adocumentary that I'm working on and
(02:43):
creating.
Deadlines for school that I'min, deadlines for the podcast, and,
like, they're all blurched.
Together in my brain.
And I'm at the point whereit'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 tookus 30 minutes to remember what we're
recording right now.
And that is okay.
I just wish I could havehelped more.
(03:03):
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, becausethere 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, maybeI should have been able to help.
No, wait, I couldn't have.
(03:24):
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 thecalendar and I'm like, no, like what
you're saying.
I think we're fine.
And then she's like, oh, butactually, we have to have everything
to this one person by this date.
Oh, okay.
(03:44):
That's why we need to getahead 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 socute, but it's.
This was so funny.
(04:05):
So it's not a fail per se, atleast, but it's just like a wild
little story.
We went out to eat tobreakfast one morning, and actually
it was me and Brett and Jacob,and we were at anyway, a breakfast
diner in Cumming, Georgia, andI asked for water with no ice.
(04:29):
And the little waiter, he waslike a 16 year old boy probably.
He was like, oh, I don't knowif I can bring you water without
ice.
And I was like, oh, that's weird.
I said, well, I just, youknow, I don't.
Sometimes I feel like whenit's cold, I can't drink.
Like, I don't drink as muchwater as I should because it's just
(04:50):
too cold.
And he was like, yeah, I thinkthere are health benefits to drinking
warm water.
Okay, I got you.
So he came back and he had amug of hot, hot coffee water with
no coffee in it, just hotwater, boiling water, kind of.
And then he had a glass thathad ice water in it.
(05:13):
And he's like, so.
And Then he brought me anempty glass, and he wanted me to
pour them together so that thewater 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 thoughtmaybe he's just pranking me.
But he was very serious, andhe just didn't realize that he could
(05:35):
just get me some water with noice in it, just regular water.
And I guess he thought it hadto be, like, you know, hot from the
coffee thing or ice water.
And so it just.
It makes me think that heprobably is just one of those people
that does something the sameway every single time.
And then when that routinegets thrown off, it's like, oh, I
(05:58):
can't do that.
And exactly.
Like, you're like, oh, wait,like, I can.
But, like, it's hard for themto 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.
(06:19):
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 cutebecause we were ordering.
Jacob ordered eggs, and hegoes, you know, I've never really
(06:39):
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'snot 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, afew months later, and he was still
(07:00):
there, so I was very happy.
Yay.
But he was you, kiddo.
Yeah.
But he had lost some of hisnaivete, because when he served,
he didn't remember me oranything, 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.
(07:23):
You were just a little baby.
Oh, man.
I still have, like.
Like, go.
Oh.
Like, at the thought of beinga server, like, it's a lot for just
days.
I never want to do it againever, ever, ever.
I feel like I would rather be, like.
I'd rather be, like, workingin a landfill before being a server.
(07:45):
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.
(08:11):
Hey, squad.
It is Samantha, and I am solotoday for Lottie.
Don't lie.
Melissa has graciously let merun today's show as I share with
you guys my personal mentalhealth story.
So this is very personal, andnot most people don't know what has
(08:37):
been going on with me and whatI have been working through the last
year.
So I've decided that sinceit's Mental Health Awareness month,
and the statistics that I'mgoing to share with you guys are
so shocking that I felt like,how could I not share with you guys
(08:58):
what I've been struggling withbecause it's significantly impacting
so many people around us thatI've learned you each probably know
multiple people that actuallystruggle with the same thing.
So are you ready?
Let's do this.
Okay.
(09:18):
So when we started thispodcast, do you guys.
For those who don't remember,you know, when we started.
I'll just kind of recap.
Melissa and I started thispodcast shortly after I had started
experiencing seizures.
Let me just paint the picturefor you.
So I'm on my dream vacation with.
(09:41):
With my husband Simon.
We're in Costa Rica.
Costa Rica had been one of theplaces that we had been trying to
visit four times, and it keptgetting canceled as we'd get ready
to go.
Either, like, one time we madeit to the airport, we made it on
the plane, and then the planejust, like, was broke.
(10:02):
Broke after three hours ofsitting on this empty plane.
And so we had to get off, andwe weren't able to go.
Another time, the flight justin general got canceled, and there
was no other flights that wereavailable for us.
Gosh.
Covid.
Covid hit.
And then that canceled one ofour trips.
Like, we just.
We kept trying, and it keptnot happening.
(10:24):
And so just the desire to gogot stronger and stronger.
And why I wanted to go isbecause Costa Rica, one has all different
types of environments to explore.
Like, I mean, there'sliterally a jungle, there's mountains,
there's the ocean, and there'sjust a whole lifestyle to explore
(10:44):
over there.
And one of the things that Ireally have enjoyed doing is reading
about whales and their migration.
And I was particularly drawnto the humpback whale migration.
And there's a little towncalled Uvita that a lot of people
haven't really heard of inCosta Rica.
It's not often.
It's not really traveled that Much.
And it's got this beach that'scalled the Whale Whale's Tail.
(11:07):
And it's known for being wherethe humpback whales go to give birth
and teach their babies tosurface and breathe.
And that is just somethingthat I really, really wanted to see.
So Simon and I finally make itto Costa Rica after.
I mean, I literally think thisis like our fifth try, and we finally
(11:30):
make it to Costa Rica.
And the first two days, we arejust not getting along at all.
Little did each of us know, weboth 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 thedream trip and it felt miserable.
(11:52):
So let's.
I think we were two days intothe trip, maybe, maybe three, and
it was our day to go onto theboat 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.
(12:12):
I think like a storm wasrolling 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 ofyour seat and, like, hard to.
And, you know, it was okay.
(12:33):
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 ofthe boat too.
So it's like the worst part.
It's the part where you'regetting hit the most.
You're experiencing, like, themotions 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 fora mom whale and baby and.
And there's one.
(12:53):
So we're all surrounded,basically, this.
This mom whale with its baby whale.
And I just remember just thisbig emotional release.
Like just these chills cameover my body.
I'm looking at the mom whale.
Like, tears start coming outof my eyes.
And I just look at Simon, Igo, this was worth it.
This.
This was amazing.
This is worth the wait.
(13:14):
This is everything I wanted.
And next thing I know, wherewere heading back to the beach.
I.
I literally don't recall fromthat moment back to us getting back
to shore.
(13:35):
And apparently that's when Iexperienced my first seizure.
And that was really scary.
Of course, for Simon, youknow, he doesn't know what's going
on.
He that was, that was a scaryexperience for him.
And I can only imagine.
I don't know how I wouldhandle that and what I would do in
that situation.
(13:55):
So in a selfish way, I'm kindof thankful that it wasn't the other
way around because I don'tknow what I would do.
So we get to shore, he helpsme kind of recoup.
I think I remember someonegiving me like juice and I remember
we got like a snack and wewent back and we.
(14:18):
Over the next couple days, itjust something.
It kept happening and then Iwould 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 firstseizure, I woke up that day and everything
(14:42):
fell off.
And when I say everything felloff, I mean like my surroundings
felt like they were movingkind 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, mysurroundings are just.
Everything's moving in adifferent wavelength and it just.
(15:04):
I knew I didn't feel right andI knew that I was moving slower than
usual.
And then the episode happens.
So as they keep happening eachday that we're on the trip, thankfully
we're still able to enjoy alot of the things that we wanted
to experience.
But it was challenging becauseI would have an episode and then
I'd have to sleep for a littlebit and it would just take me a while
(15:25):
to get back into a normalgroove and just be present again.
But they, I, I typically wouldfeel 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.
(15:45):
The environment starts moving.
I realize I can't hear what'sexactly going on around me.
Everything just kind of turnsinto noise.
And I'm not hearing and seeingthings like as they're happening.
It's like, it's very delayed.
What else happens?
I remember the final, thefinal thing is I remember feeling
like, oh, fight this, fight this.
(16:05):
You got this, you got this.
But it would feel like my headwould just get heavy.
And once I knew, like once Iwould feel that my head gets heavy,
we learned that that's likegame over.
Once the head gets heavy and Ifeel like I can't hold it up, there's
going to be a seizure and I'mgoing to be out for a little bit.
And he.
(16:26):
Simon was so caring.
Like, he took so such goodcare of me.
Even though we each thought,like, oh, we're gonna go home and
get divorced, like, he.
He really cared and he reallytook care of me and helped keep me
calm.
And I remember we were sittingat dinner one of the last nights
that we were there, and hejust looks at me and he starts crying
(16:47):
and he was like, this has beenthe most scariest thing I've ever
experienced.
And I just love you so much.
And I just.
I, like, can't imagineanything happening to you, so we
need to figure out what's wrong.
And.
And I remember just beinglike, wow, I needed to hear that.
Like, I really needed to hearthose words.
I really thought that we werejust on total different planes.
And it just.
(17:08):
I didn't see another option Iwasn't getting.
I wasn't feeling the love thatI needed and the attention that I
needed.
And here I am experiencing,like, one of the, like, scariest
points in my life and werefeeling love for each other and being
able to express it.
And it was definitely a bigturning point for us.
(17:31):
So we got back into the UnitedStates and, you know, Simon was like,
hey, if you have another onewhen we get into the States, like,
we need to go to the hospital.
We didn't go to the hospitalwhile we were in Costa Rica.
One because we weren't exactlysure what was going on.
I mean.
(17:52):
Yeah, we weren't sure what wasgoing on.
I mean, you're.
You're in another country, andI don't know what you guys have experienced,
but when you go to anothercountry like Costa Rica, Jamaica,
things like that, the foodtastes different, it's made different.
It doesn't have all the thatis in our food.
So you like, the tastes areall different.
(18:13):
I still swear I don't.
My kids don't believe me, butI swear, like, the bananas in Costa
Rica are so good and theytaste so different than the bananas
that we have at home.
And it's really like the foodis just more natural.
They don't have crap in them.
And so we really were thinkingthat I was having just some sort
of, like, sugar crash, havingless sugar in my food and less crap
(18:37):
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 happenanymore once we get back to a normal
diet.
So we thought, no big deal.
Like, let's just get the tripover with.
We get home, and it was thatnext morning that we were home is
when all the feelings startedcoming again and I had a seizure.
(18:59):
And when I have one of theseseizures, you know, again, I, like,
I don't obviously, really knowwhat'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, closetogether, and my eyes are fluttering,
(19:22):
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 hardtime staying awake.
(19:43):
So, like, I'm constantlyneeding, like, falling asleep to
take like, a little nap orsomething, 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 thesestarted, like, hot, hot summer, and,
like, uncontrollably cold towhere, like, even though the environment
(20:04):
is hot, like, I'm bundled inblankets and hoodies, like, trying
to keep myself warm because Ilike, my body just, for some reason,
can't feel warmth.
So, of course, all of thesesymptoms really do lead to a seizure.
They're classic simples, youknow, classic signs of a seizure
(20:26):
down to biting your tongue andyour tongue being swollen.
So when it happens, when weget back that first morning back
in.
Back at home, back in the USit happens again.
And I think my mom had had thekids the whole time we were gone,
so we felt bad.
And Simon called his mom tocome get Nora.
(20:49):
I think the big kids werestill with their dad or something,
and obviously a lot of this isstill a blur, but we'll get.
We'll get to the point, I promise.
So I remember we get to thehospital, and because we had been
out of the country, we gotquarantined, which actually was kind
(21:10):
of one of the funny, coolest things.
It's just like Grey's Anatomywhen you watch someone get quarantined
and you're in this, like, bigglass room with, like, sliding doors,
and all the nurses and doctorsthat 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 neverhad faster care in a hospital than
(21:32):
I did coming back from Costa Rica.
I mean, we were immediately ina room, immediately being treated.
It was great.
It was, you know, if you'regonna go to the hospital?
Maybe, maybe just say you'vebeen 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 theseblood tests and I remember they were,
(21:54):
I'm really hard to get acatheter in like for blood.
And I remember that was one ofthe first things that they did is
they wanted to make sure thatthey had a catheter access in, in
case I started having aseizure again.
And I, while they were gettingthe catheter in, all the feelings
started coming and I startedwarning them, like, hey, like I'm
starting to feel all the things.
And then once my head startedgetting heavy, Simon, you know, told
(22:17):
them, hey, like you gotseconds, like she's about to have
one.
And so I remember they likefinished the catheter really fast.
They injected this medicationthat I guess like stops seizures.
And I remember this wave, likethis just like warm wave just filling
(22:38):
my whole body.
Like my chest felt hot andheavy and just as hot and heavy is
running down my whole body.
And at this point they'regetting ready to transfer us into
a room because they'vedecided, you know, I'm probably not
going to kill people frombeing in Costa Rica.
So they're willing us toanother room.
And I, I really think I'mhaving a heart attack and I'm dying.
(22:59):
Like I just, I feel like Ican't breathe.
And everyone's like, no, youknow, your heart rate's normal, your
oxygen is normal, like you're fine.
And I'm just wide eyedthinking, this is it, I'm about to
die.
I know, I don't know what, Idon'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, emergencylike antianxiety injection or something
(23:23):
and the feeling went away.
So I wasn't dying.
I guess, I guess that's likean intense panic attack.
So that's good.
I get scheduled an eeg.
So an EEG is when they attachall those little wires to your head
and they can pick up on thebrain wavelengths.
Like you can see if you move a finger.
(23:44):
Like you see like wave changeson this machine.
And a lot of times when theyhook them up, you, you can see if
someone has had a seizurebecause it'll be like some abnormal
tease in the line.
But sometimes not, sometimesit doesn't show up.
So when I had mine, I had twothe first one was inconclusive.
My I have a lot of hair and soapparently it didn't connect right.
(24:07):
And so they came back the nextday and they did another one.
That one came up with no abnormalities.
So no answers onto what wasgoing on.
I had a, an MRI or a CAT scan.
I can't remember which one'swhich, so I don't know the difference.
But I remember going into thismachine and having like a scan in
my head and there was nothingthere like that could cause like
(24:30):
a seizure.
So that was good.
But blood work was all normal.
We did all sorts of tests.
They even did a spinal tap andI really did not want to do that
but they couldn't find anyanswers and they were like, you know,
this really, really, reallycould 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 Idid it.
(24:52):
I actually passed out duringthe spinal tap.
I1 I don't do needles verywell and I think I just worked myself
out and I passed out during it.
But I remember like being ableto hear and then her saying oh, she's
out and then waking back upand I'm like laying back down flat.
And I was like, well I toldyou guys I'd probably pass out.
(25:13):
I passed out.
When my blood's drawn, it'sjust, just a whole thing.
So I was in the hospital forfive days.
I had like just numerous tests run.
Nothing was coming up.
When I left the hospital, Ileft on anti seizure medications,
Keppra and on a anxietymedication that doubles as like a
(25:40):
antihistamine.
If I remember correctly.
It was a really, it was odd.
And Trazodone I believe I leftthe hospital with.
Yes I did because I, yes, Iwas having a hard time sleeping and
I was so like overwhelmed.
(26:00):
Regardless, I leave thehospital on, on a handful of meds
and their you know,recommendation is stay on this medication,
this anti seizure medicationand get in with a neurologist when
you can.
Being on Keppra, I know thatsome people have been on Keppra and
like have felt okay.
But there is wow.
(26:24):
So kepper your brain and yourbody has to get used to it.
So when you start takingKeppra you are.
I was high as a kite is what Iguess 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.
(26:46):
I would forget what I was doing.
I would forget if I Took my meds.
When I took my meds, there wasdefinitely a few days where I doubled
up on my meds because I wouldtake them, and then poof.
Am I holding my bottle becauseI just took them, or am I holding
my bottle because I'm about totake them?
(27:06):
That's how bad it was.
Now I know that that is a verycommon side effect with Keppra.
It really clouds your memory.
Not even just when you starttaking it, but long term, it affects
your memory.
So I did learn that there'speople that would have family members
that have seizures and onKeppra, and they were like, yeah,
(27:27):
no, that's really common.
Like, we have to do thisreally strict medication tracking
system because they will justbe looking at their pills and can't
remember if they just tookthem or were about to.
I was like, great.
Okay, well, that's good.
Good to know.
Kepper is also a very big sideeffect of it is rage.
(27:48):
And that is definitelysomething that I did not want to
experience.
Fortunately, I don't feel likeI ever got the Kepper rage because
I didn't take it for too long.
It was only maybe two weeksbefore we did go to the neurologist.
And she.
I remember we felt like, okay,she's gonna figure out what's going
(28:10):
on.
But what she did is she satwith us for maybe about 30 minutes
and then basically just kindof shook up all my meds.
She wanted to wean off aKepper and put me on this other one.
And I think it started with anL, but I can't remember what it was
anymore.
And she, like, upped myanxiety and changed my anxiety meds,
(28:33):
and I can't even tell you anymore.
Basically shook up my meds.
But ultimately she ended uphaving me.
She.
I remember the goal was towean me off Keppra, but she ended
up having me on Kepper andthis other anti seizure.
So I was on two anti seizuresat one point because she ended up
(28:54):
deciding to keep me on both ofthem on top of the anxiety medicine,
which I think is what I stilltake today, anti anxiety and depression.
So we follow up after threemonths of her changing things up.
And what we remember from thatappointment is that in three months,
we would check up, see what'sbeen going on.
(29:14):
Has there been any more seizures?
And then start doing whateverwe could to figure out the cause.
How can we get rid of them?
Because every time I'm havinga seizure, I can't drive.
I can't drive for six months.
And so at that point, by timewe had seen her, I had still had
a seizure since the hospital.
(29:35):
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 hadbeen provoked it until well into
(29:57):
the next year.
So that's also really stressful.
I have kids to drive around.
Being on the Keppra, it, itjust affects your brain so much too
that I couldn't function andno one really knew what was causing
the seizures and when theywould happen.
And so my mom was at my houseevery day, like basically taking
care of me and Nora because Iwas a ticking time mom, couldn't
(30:21):
leave the house, didn't knowwhat was going on half the time.
So we go to the doctor and shespends five minutes with us in the
room at our follow upappointment and says, great, stay
on these meds.
You know, we'll see you, we'llsee in a while.
And I, I think, let me correct.
I don't think we, we did.
We saw her in a month afterbeing on the meds.
(30:41):
Not, not multiple months.
It was, we saw her about amonth after the initial med change
and meeting her, saw her forthe five minutes and then she was
like, all right, cool, we'llsee 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 wasto figure out.
(31:01):
And she was like, well, themeds have improved it.
Maybe not perfectly, but theyhave improved it.
So let's just stay on the medsand we'll reevaluate in six months.
I remember just kind of beinglike numb and not.
I don't think I really had an opinion.
And Simon was very, very, veryadamant that that's not acceptable
(31:22):
and that's not what we're doing.
We're going to know what'sgoing on and we're going to figure
out how to solve it.
And so I'm really thankfulthat he is, you know, just when he
wants something, he's going tofind a way to get it.
And that's just how he is.
And so he wanted to know whatwas wrong with me and he wanted to
help me get better.
So we talk to friends and wefind other neurologists that we know,
(31:43):
people that have used them andwe, that was probably a few months,
a couple months.
Few months.
Definitely.
I mean, probably within twomonths or whatever of seeing that
Last doctor we see, the new,this, this neurologist and he spends,
I mean, an hour and a half inthe room with us for our first appointment,
(32:04):
going over each symptom, likewhat happened, like history, like,
what does it look like, whatdoes it feel like?
Like just all these things.
And I remember in thatappointment just feeling like, oh
my gosh, we are going tofigure 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.
(32:25):
I'm either having frontal lobeseizures, XYZ or I'm having what
is called PNEs, psychologicalnon 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
(32:47):
that you're correct.
It's not going to be pnes,it's going to be frontal lobe seizures.
Because everything ispresenting in the same, the exact
what it would look like andhow you feel.
But as confident as he was, hedid give us the option if we would
like to do an at home EEGwhere they hook me up for five days
(33:09):
and I'm on a camera, I'm onchest monitors, brain monitors, and
basically just can't leave the house.
And I'm monitored on camerafor five days, sleeping all the things.
Within those five days I hadmultiple seizures.
And so as frustrating as itwas, it was good because now it's
(33:31):
captured, the waves are being captured.
My, the image of what'shappening to me is being captured.
So this is great.
I get sent off and evaluatedand maybe, maybe seven days later,
five, seven days later, I getthe call that, hey, I got to see
the episodes, I got to see thebrain length and I have to say it's
(33:56):
non epileptic seizures.
Non epileptic.
So what does that mean?
That means that there isnothing neurologically causing the
seizures and that there'slikely going to be a psychological
cause.
And I said, okay, so you'retelling me I'm crazy?
(34:18):
And he goes, you're not crazy.
This, I have seen it before.
And you know, I, I saw itlike, you're not crazy.
It's, it's happening.
And he recommended that I gosee a specific type of therapist
to work on some psychologicalhealing options.
(34:41):
So that news was devastatingto me.
Like I, I literally cried nonstop for days because I felt like,
oh my gosh, I have beenaffected at this point.
For six months complete, likenot driving, not feeling like I have
a life for six months to betold that it's basically in my head,
(35:08):
like that's, it's wild.
And in the time that we werewaiting on a diagnosis, like, I was
so depressed.
Also the seizure medicinesdon't, you know, really, you get
really depressed.
And I remember I wasrecommended to get find some like
seizure support groups and Idid that on Facebook.
(35:29):
But every time I would seesomeone post and every time I would
see something, I'd get angry.
Like, angry like you don'tknow what I'm going through.
Even though everyone's therebecause 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 becauseeveryone's experiencing the same
(35:50):
things.
And even more so after I gotthe 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 Ijust was in just this dark, dark
hole.
I was so depressed, likecrying all the time and just felt
crazy.
And it was embarrassing.
It was embarrassing whenpeople really close to me would,
(36:14):
would know what I was actuallydiagnosed with and what that means.
So what that means is thatthey are psychological non epileptic
seizures, meaning the.
And there's not a lot ofknowledge on it.
So other than seeing a psychologist.
So I start seeing apsychologist that specializes and
(36:37):
she can do emdr, which is mostcommonly known and a thing called
brain spotting.
Brain spotting is what seemedless invasive and was highly recommended
for me.
And so this sounds like all wild.
And we go see this therapist.
I just remember being likethis ball.
(36:57):
Like I'm just on her couchprofusely sweating, trembling and
really crying the whole timeduring this intake.
Because I'm like, yeah, youcan'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 pointwhere she goes, would you be more
comfortable if your husbandwas in here?
And I was like, yes, yes, yes,I would.
And so she called Simon andSimon sitting next to me and he just,
(37:20):
you guys know if you, you'veseen us together, like he can, he
just puts his hand on my legor 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 formsthat were pre filled out.
And from our conversation thishour, hour and a half, there's some
(37:42):
significant traumas going on.
And that trauma gets to thepoint where it can just shut down
the brain, which, I don'tknow, a lot of times it's not, we
all know a fight flight freeze.
Right.
Well, there's also two othersthat I hadn't, I hadn't really ever
heard before.
(38:02):
It's called Fawn and flop.
So that's also part of atrauma response.
My body definitely has gottento the point where it flops.
So my brain is just as shedescribed it.
It's like a ball of yarn andit's so, so tight that it can't work
out any of the problems, any traumas.
It's just wound tight and itcan't process anything else.
So if anything else goes wrongor if anything causes any sort of
(38:26):
stress, the body flops, thebrain 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 sodepressed, I was like, whatever,
I'll, I'll do whatever.
I, at this point I just, Idon't care.
I was off of the Keppra, offof the other seizure medicine, and
(38:48):
now I was just on anxietymeds, which ended up getting like,
bumped up to like the highestlevel that you can get.
And after, after about sixmonths, maybe less actually.
(39:09):
I mean it might have been likefour months of doing consistent brain
spotting, which brain spottingis kind of where you go into this
trans, like state.
You activate both sides ofyour brain and you allow yourself
to go into this transformationtype state where your vision kind
of like just blurs out andyour brain just starts playing things
(39:30):
in your head.
So it could be, you know, thefeeling of embarrassment.
Like that was really, reallyheavy for the first time.
Well, okay, like where is thefeeling of embarrassment coming from
and why?
So then you would do a brainspotting session where like that
was the thought in your mind.
(39:52):
You go into this trans andlike you're listening to like this
music that activates bothsides of your brain and you just
start seeing.
At least for me, I think it'sa little different for people, but
for me I start seeing imagesand like just kind of seeing movies
like play out in my head.
And the other unfortunate partis that afterwards I, I, it would,
(40:14):
I would be a zombie for thenext two days.
Like, because your brain,after you're doing a brain spotting
session is still unwinding andworking out everything that it was
trying to process while youwere in the brain spotting session.
So it was very hard.
And for the first while I justfelt more and more depressed because
it's so much, it's just so much.
(40:40):
So I keep up with the brainspotting because we did notice that
slowly the seizures did stopbecause I was still having them.
And I am not so embarrassedabout it anymore that I can't talk
about it.
(41:01):
In fact, what I have learnedis that I've learned a lot.
I was this diagnosis extremelyembarrassing and extremely hard to
accept and be okay working with.
(41:22):
Yes, but, but what Simon and Iwill both tell you is that it's honestly
the best thing that has everhappened in our life because I'm
going through this challenginghealth experience.
(41:45):
Simon had his own challengeson his side of the family.
That was really, really, ifyou know us, you know how very drama
filled and drastic andproblematic that was.
And we were going through thisat the same time.
And I was able to be there forhim as he's trying to process the
major changes in his life ashe's there for me going through the
(42:10):
major changes and challengesin my life.
And it just brought us so close.
It brought us so much closer together.
We were both able to be therefor each other.
So that above all has beenwhat has been made this all just
like really worth it.
As shitty as it as it is sopsychological non epileptic seizures
(42:34):
is oftentimes caused from acompound of trauma.
So the brain has so muchtrauma that has been unprocessed
that it, it can't handle anymore.
The box is full, lid isexploding and there's.
You can't.
My temper was really short.
I think a lot of you wouldknow that I had a short temper for
(42:56):
a long time.
And it's because due to thebrain not having enough space to
process anything, if we get toa point where like oh, a cup of water
spilt over.
Now I'm really angry becauseit's just another thing to figure
out and process.
And it's not, that's not anormal reaction.
That is the reaction ofsomeone who cannot process anything
(43:19):
more that is going on in their life.
Any, any more stimulant, toomany sounds on at once, you know,
too much light to just all thethings real quick to irritation and
everything feels like the endof the world.
Brain spotting helped meovercome the challenge of these non
epileptic seizures.
(43:40):
And actually what I'velearned, which is why I thought that
it was really, reallyimportant to share with you guys,
is that epilepsy, like actualepilepsy, is misdiagnosed.
40% of the time.
40% of the time a person isnot actually experiencing epileptic
(44:01):
seizures.
They're actually experiencingpines psychological non epileptic
seizures.
And so they will live on thesemedications and be misdiagnosed.
These like literally lifechanging, life altering things where
you're unable to drive for months.
Every time you have a seizure,your brain's being literally affected,
(44:22):
your personality is beingliterally altered with these seizure
medications.
So you heard me, 40% is misdiagnosed.
The average of someone who ismisdiagnosed stays misdiagnosed for
eight and a half years, butmost commonly 10 years.
So 10 years people will be onthese medications that's just altering
(44:48):
their mind and theirpersonality and affecting how they
can live their life and justcontrolling all these things.
And it's wild, it's wild, it'supsetting and it's because it's reversible.
When you have epilepsy, youcan take medication, you'll likely
(45:10):
be on medication the rest ofyour life.
But there's, that's your life.
Being diagnosed with the nonepileptic seizures, there's psychology
and therapies to help you makespace to process what's going on.
And after a year of goingthrough brain spotting and therapy,
(45:33):
I, I want to say I never haveany more seizures.
But that, that's not true.
But it's very, very rare.
You know, less, less often andI am a whole new person.
If you know me, you know, alot of my basic life views have changed,
(45:53):
a lot of my acceptance has changed.
Just my personality is so muchmore calm, so much more present and
I just have so much room tolearn who I am, which is why the
podcast was created in thefirst place.
I felt like I didn't know whoI was because all of my autonomy
(46:14):
and all of my freedom had justbeen taken away from me and I already
didn't know who I was.
I have been a mom and working24 7, not 24 7, but you know what
I mean, working full timejobs, I didn't know anything about
myself.
And it's really easy for us tolose that and not even realize that
we've lost it.
Can you right now tell me likewhat your favorite color is?
(46:37):
Can you tell me what yourfavorite style of clothing is?
Like that makes you actuallyfeel good.
These, these are the thingsthat I couldn't even answer.
And Melissa had made a commentthat, oh, I've always wanted a podcast
and I You know, kind ofchuckled it off.
And then I go, well, I can'tleave the house and talk to people
(46:59):
any other way.
You want to do a podcast with me?
And she did.
So Skirts up was born.
And what happened with Skirtsup being born is the other best thing
that ever happened to me.
We started talking and meetingwith so many different people.
(47:20):
And we used it as a spacewhere we could just record ourselves
learning about random shitlike, oh, let's talk about tarot
and look up what tarot is.
Let's, oh, there's this oddspiritual type of belief where, you
know, there's spirit guidesand stuff.
Let's learn about that.
And that just led into findingother people who do really believe
(47:43):
other things than what I hadever heard of or known to be true.
It led to gaining moreperspective and knowledge.
I mean, again, these areperspectives that I've never been
exposed to before and neverwould have known existed.
And so just got, I just, itfed my natural thirst for knowledge.
(48:05):
And so just getting to meetmore and more people, I actually
found more and more of myself.
I actually have found alifestyle that I'm, I love, I'm really
comfortable with.
My marriage has become so muchstronger because of my mind just
being more open and receptiveto change and things that are different.
(48:27):
And really, I mean, one of mybiggest frustrations and why I felt
like it wasn't worth beingknowledgeable in like, one's, like
a particular view or belief isbecause my brain just, it has a really
(48:50):
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, theMormon Church?
Or do you believe that, youknow, you have a higher self and
(49:10):
there's spirit guides helpingyou along the way?
Like, my brain would go, okay,I hear all the facts about living
in the like.
As a Mormon, I understand howthat can be comfortable for people
and how that happens and alsowhy people can, you know, leave the
church and why they would.
Then I can also hear and feelvalidation from everything that someone
(49:32):
says about spirit guides andyou know, what, what that means.
And so then my brain wouldjust get overloaded and be like,
well, I don't know what Ibelieve in.
And this is overwhelmingbecause how can I believe in two
things at once?
And one of the most mindchanging, life changing phrases that
was said to me by someone onthe podcast, Kelly Palmeteer, was
(49:54):
that it's okay to believe ineverything and nothing at all.
And that's kind of been likemy philosophy for, for many things.
And I go, oh man, isreincarnation real?
Like, I really think it is,but what if it's not real?
So what?
So what?
And it's okay to believe inall things and nothing at all.
I, it's, there's just so muchto explore and I, I don't know, I
(50:20):
don't really know what to tellyou other than I have really enjoyed
getting to know the personthat I am today.
And it's been a journey.
And this podcast just keepsgiving me purpose and giving me actual
life goals and there's just aneven higher and better me that I
(50:44):
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 randomseizure episodes and there's a reason,
(51:05):
usually something that mybrain just again has a hard time
processing because there'sstill 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, Iexperienced a lot of flops.
It was really hard having thatextreme change in my life.
(51:27):
So we've been getting overthat and with that has on, has, has
opened some more aspects of mylife that have yet to have been worked
out and you know, actually processed.
So now my brain has space toprocess that.
And so now it's just anotherwave of ups and downs and you know,
(51:50):
experiencing really, reallytough stuff inside of my head and
having to talk about it andhaving to relive things and that
really sucks.
But I know that after a whileI'm going to be an even better person.
I'm going to be an evenhappier person.
I'm going to be an even moreaccepting person.
I'm going to be an even morelovable person.
(52:11):
I know I'm lovable right now,so don't, don't come at me.
But I can love myself more themore that I continue to grow.
And so of course that meansthat I'm able to accept myself or
accept love from others awhole lot better and a whole lot
more.
And I, I have a lot more loveto, to accept and give and I look
(52:33):
forward to, even though it'sdown right now, getting even better
and seeing where I am inanother year.
So I encourage you guys toreally read up on trauma.
You know, actually, actually,you know what, I'll probably, we'll
(52:58):
get a therapist on to talkabout trauma and how it leads to
non epileptic seizures.
It'd actually be reallyinteresting to hear the professional
perspective and not just myhalf memory of what I experienced
and lived through, but alsojust really let the numbers sink
in because it's, it's mind blowing.
40% of people who actuallyhave non epileptic psychological
(53:20):
seizures are misdiagnosed andlive on these medications that make
you a zombie and just limityour, your life and alter your brain
for eight and a half to ten years.
It's wow.
If you are having seizuresthat have been unexplained and they
can't find a cause andnothing's showing up on the scans,
(53:41):
please, please, please,please, please demand an at home
E to figure out what isactually happening.
Because if you can get on thescan having a seizure, like in the
moment, like that's your answer.
Like your brain can't, youcan't make up your brain waves to
(54:02):
show something on the EEGthat's not really there.
So if you're having an episodeand nothing shows up, that's your
answer.
You do not have epilepsy.
You, you have trauma and youneed help and that's, that's okay.
And just know that once you doget help, your life becomes freer
(54:23):
and you just start to lovelife a whole lot more.
So yeah.
Happy Mental Health Awareness month.
Take care of yourself.
Did you like the episode thatyou heard today?
Great.
Share it with a friend anddon't forget to rate and review.
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