July 4, 2025 • 33 mins
Welcome to Chronically The Sickest - the sickest podcast you know.
On today’s episode I’m joined by advocate, Deena.
We get into ER visits, childhood symptoms and how genetics play into chronic diseases.
Follow Deena on Instagram @themigrainenetwork
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:04):
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically
the sickest people we know. I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Welcome Dina to Chronically the
(00:33):
Sickest podcast. I am elated to have you here.
How are you doing? I'm doing well, thanks for
asking. How are you?
I am doing great. We, we just found out that we
are both on the West Coast, which rarely happens when I'm
recording virtually. So I'm, I'm, I'm glad you're
here. Likewise well to.
(00:53):
Start us off, Can you tell me a little bit about yourself so me
and the listeners can get to know you?
I reside in the Seattle area with my husband and two dogs
named Tater Tot and Waffles. Fun fact, both dogs are named
after potatoes because I love potatoes.
(01:14):
I've had chronic migraines sinceI was three years old, but
didn't get formally diagnosed until I was 15 and also a third
generation living with chronic migraine.
So I got really big into advocacy work during the middle
of all the disease craziness to give me kind of a purpose to
live with migraine. And that is how I came across
(01:37):
your podcast is when I started really sharing my story on
social media and felt like this would be a great Ave. to also
raise more awareness about migraine.
Yes, absolutely. OK, first of all, absolutely
love your little your little dognames.
Oh my goodness. I'm also a fan of potatoes and
(01:57):
I'm a fan of those names. It's hilarious.
Yes, waffles are short for waffle fries.
Of course. Well, you said that and you were
like tater tots and waffles and I was like, right, sounds like a
great brunch like to have. And then you were like waffle
fries. And I was like, Oh my gosh, even
better. OK.
(02:19):
And it's also, Oh my gosh, I can't wait to get into your
story because that already sounds insane to say that you've
had chronic migraines since you were essentially a toddler and
that it's like genetically predisposed at this point.
OK. Also, I'm so glad that you are
(02:41):
here and that we were able to connect over social media.
It's such a great Ave. like you said, to like, not only raise
awareness and like advocate, butmeet other people who are
dealing with similar things. Yes.
Exactly. I have really expanded my
network since I started sharing my story and it's been great
connecting with just so many people really throughout the
(03:02):
globe that also spend in like a similar situation that I have
been in. Yeah, yeah.
OK. I have to ask the the big
question, which is what do you think makes you chronically the
sickest person you know? I've thought hard on how to
answer this. I didn't know whether to go
funny or serious so I'm going totry to go in the middle.
(03:23):
I think by the age of seven I'vehad every test done to my
stomach. Also a colonoscopy, which is
very rare to have a colonoscopy at such a young age.
So I would say I just have had anumerous tests done to me by the
age of 7 because migraine is invisible and there's not a
(03:43):
medical test to show that this person has migraines.
So I went down a rabbit hole of numerous tests and still to this
day I've had probably a lot of colonoscopies, more than the
average because I also have irritable irritable bowel
syndrome. So I think I've seen it all.
Nothing surprises me at this point within my journey that
(04:05):
there's always something new. Oh.
My goodness. OK, I kind of my first.
OK, OK, that answer was awesome.That really is the sickest
answer to be like, I've gotten acolonoscopy at age 7.
And that also fully led me to wanting to ask like, OK, if
(04:27):
you've had so many colonoscopies, I kind of want to
ask if you have any tips and tricks because at this point
that would be good to know. But sorry, I understand that's
not what this episode's about, but that was a great.
Answer well, I think it like my advice is good a bidet even when
you have a chronic illness because like your medications
(04:49):
affect your GI tract. Bidet is like I found a, I
discovered bidets like five years ago and I was like, wow, I
love these things. So that's my advice to anyone
that needs to go colonoscopy, get a bidet, then take get rid
of the stigma that it's a weird thing and once you go the big
day route, you're never going togo back.
(05:11):
Heard that. And it is so much more common in
other countries. So it's kind of funny that here
it's like, oh, no, we no, that'sweird.
We don't, we don't like that. But thank you.
That was great advice. OK, well, if you're offering
great advice about colonoscopies, I can only
imagine you're going to offer some great advice about chronic
migraines. So tell me a little bit about
(05:31):
your story. You said it started so young, So
what was that process like? So I'm the youngest of three and
my second oldest brother and I both started around the exact
same time. So he's two years older than me,
but he had head pain and severe light sensitivity and my symptom
was a tummy ache with severe vomiting at times.
(05:54):
So there is this puzzle that doctors had like what's wrong
with these two kids? The parents are perfectly
healthy. There's no medical history at
this point in time of any diseases.
So what's wrong with them? That kind of stuff is down the
rabbit hole of doing a lot of tests.
My brother had a EE G to check to see if you had epilepsy.
(06:15):
When you have migraine, it's normal for it to come back
abnormal because just how migraine also affects the brain.
So we were both diagnosed with fatigue malt epilepsy, which is
known as silent seizures. For majority of like my life all
the way up until 15, I was on anti seizure medications and
antidepressants to treat my symptoms and that's also known
(06:39):
to treat migraine. So like after age 7 I had a
pretty normal childhood because I was even though I was
incorrectly diagnosed, I was stillwell managed where my
chronic illness just didn't playthat big part of my life.
The funny thing is one of the doctors that saw us, he said
that this is a genetic disorder that your daughter to my mom is
(07:02):
going to get worse by the age of15.
Your son will outgrow it and either you or your husband will
end up with the disease even though he had the disease wrong.
That's exactly what happened. My brother got into high school,
outgrew the disease. I don't know if outgrew it is
the right word but as his body changed migraine just kind of
(07:23):
disappeared. I got re evaluated, diagnosed
with migraine. Fast forward to I turn 18, my
mom gets rushed to the hospital with stroke like symptoms and we
go down a rabbit hole of four years of fighting with doctors
as something's wrong with my mom.
Turns out she had hypolegic migraine which is a migraine
(07:43):
that mimics a stroke. So it was a very crazy thing
that like the doctor predicted what would happen, but having
disease completely wrong. And when my mom got diagnosed,
it became transparent that like,oh, her mom also had migraine.
But because of a language barrier, my grandmother was an
immigrant to the United States. She was never really able to
(08:06):
advocate that. Her head always hurt.
Growing up, my mom remember saying, like, my mom would just
need to go into a quiet room with black lights, dark lights,
lights out and just like decompress, that's a sign of a
migraine. Like if you can't be around
light, usually, you know, it's probably something going on.
So that kind of started my journey.
(08:26):
By the time I turned 20, my disease turned debilitating.
I moved away to college and I went to College in the middle of
nowhere. There was no neurologist, no
doctor to see me. So my mom came up and helped me
in. After that, my disease just
became a daily thing. It wasn't, it was episodic up to
I turned 20 and then my life just turned upside down on
(08:49):
trying to figure out how do I live with migraine while being
extremely medication sensitive and trying to find a doctor that
will help me because gaslightingand dismissiveness is just so
common when you have an invisible disease.
That is so crazy to essentially have a doctor, like prophesize
(09:09):
what's going to happen in your life and then have it happen
despite it not being correct butstill being correct.
Oh my goodness. So.
Did you get diagnosed around your 20s then with like migraine
Migraine or no you said it 15? I got diagnosed with 15 and then
(09:31):
I was re evaluated. I was admitted to the hospital
so I traveled to Chicago for help.
I already saw numerous doctors in the Seattle area and it was
just they weren't believing me. I asked to get referrals out and
the doctor should have told me Idon't think you're severe enough
for me to give you a referral out.
So I called an old doctor that Ihad a lot of trust in and said
(09:54):
like could you guide me on like where to go?
And he recommended a clinic that's in Chicago that just
treats migraine and headache disorders.
They admitted me into the hospital for 14 days and I was
re evaluated then and I was diagnosed with intractable
migraine, which is a migraine that once you get into a
migraine attack it lasts more than 72 hours.
(10:16):
For me, I was at the point of like I could never end an
attack. It was just a constant attack
for nine months. When I was admitted, it wasn't
like the goal to stay there for 14 days.
The goal was to stay until I could get my pain down from like
a nine to maybe A7. Like a 7 was like a realistic
goal and it just took 14 days ofnon-stop treatments to just try
(10:43):
to break my cycle of an attack. So that's awful.
I mean, I feel like migraines are fairly common and like you
said, someone goes, oh, you know, like I had a bad migraine
and I I went and lay down in a dark room for 24 hours and it
(11:07):
got a little bit better and now I can function.
But I mean, chronic migraine, yeah, lasts longer than a few
days, but to have it last monthsis awful.
So what did they do in that, like intensive program to help
with your with their migraines? Like what?
(11:28):
What got it to perhaps A7 or 8? So when you're admitted, they
will give you like what's known as like a migraine cocktail.
It's numerous IV medications to try to break down the cycle or
just like decrease your pain. It was every 8 hours I would
(11:48):
have to take medic medication, be given through the IV, and
then within the 8 hours before my next treatment, I could say
like, hey, I'm still in high pain.
Like give me something else. And like I had a list of things
I could pick from. And like, the goal is also to
try that list to know like once I get released from the
(12:09):
hospital, like what could be in my migraine tool kit to help me
at home. So the goal was really to try to
figure out one like I was on medication from when I was like
7 to when I was admitted, I was still on the same medication.
And to stop something when your body's been on it for over 15
(12:31):
years, like it's, it's not that easy.
Like your body becomes very dependent on it.
So like, that was the other partof the treatment plan was like
do a slow detox of this medication to make sure that it
wouldn't cause a huge attack, that my body wouldn't go into
full fight mode. That was the other part.
And then like also during the trip, during the
(12:53):
hospitalization, they had nutritionists come and talk to
me. I did biofeedback to learn how
to like, relax and try to calm down.
And also like, it's an entire hospital floor of just people
that are admitted for migraine. So you also get to connect with
other people. And it was like the first time
in my 23 years of living with migraine that I was surrounded
(13:16):
by other people with migraine. I never had that experience.
And that was like the first foot, like the first eye
opening. Like, oh, there's a whole
community of people out there. Like I didn't even know there's
different types of migraine or that foods could trigger a
migraine attack. I was just never educated on
that, even though I had the disease since I was a little
kid. Like a doctor never went
(13:38):
through, hey, you should be lookout for XYC.
Like these will make it worse. I never had that conversation
until I was 24. I mean, I'm so glad that after
all of those issues that you raninto with doctors in Seattle not
believing you, that you were able to, like, go to this
(14:02):
intensive migraine program and like you said, meet other
migraine spoonies and get to connect that way.
But it's just so frustrating to hear that you weren't given the
tools you needed to succeed and like the one tool you did have
was accidental and given for a different diagnosis so.
(14:24):
Yeah, it's like, it's also crazybecause like, I became a
caregiver for my mom and she went through all of this as
well. And the level I think that the
stigma I faced as a child still existed in the ER system when my
mom was admitted into the ER, it's like that hasn't changed of
(14:45):
like, but OK, you're not, you don't have a brain bleed.
Like we're releasing you. And I had a fight for the
doctors to say, no, you need to admit my mom.
Like she can't speak. Like there's something clearly
wrong with her. Don't just let her go just
because she's not having a stroke.
But you're saying she's having kind of like a stroke, but it's
not a stroke. So it's just the gaslighting and
(15:07):
dismissiveness still is very real, even though it was a huge
gap between like I was the patient versus I became the
caregiver. Yeah.
Thank you for touching on that. Because I, I can't imagine being
the caregiver for your parent and having to advocate for them
(15:30):
while you yourself obviously arekind of going through something
as well. But yeah, the ER system, the
healthcare system in general, isin need of an overhaul.
And we need to have more education for doctors and
nurses, but also like, we need more doctors and nurses so that
(15:52):
perhaps when people come in and they're like, it's not a stroke
or a heart attack and you go, yes, but something is still
wrong. They go, I had sex to suck.
You have a nice night. And you're like, can I say
something perhaps a little, a little a little crazy?
(16:15):
OK hear me out. I know y'all have food
allergies. This is a chronic illness pod.
I am aware of my audience. You're gluten free or dairy free
or something free or who knows maybe you just got diagnosed
with gastroparesis. What I do know is that belly
baking mixes are yummy and all the bad things free.
(16:37):
Plus they were made with collagen and other vitamins,
meaning they're not only not badfor you, they're good for you.
Click the link in the description to try them out and
get 20% off with code sickest onme.
The brownies are bomb by the way.
Y'all literally my favorite now that I think about it.
(16:58):
I may go make some right now anyway.
Your your your. Odd kind of doctor prediction
that was given where it's like one of your parents is going to
have this same diagnosis later down the line.
(17:21):
And obviously, like you said, all the things came true because
this is like some crazy Hollywood movie.
But I almost want to say, like, I wonder if it would be
different if it was your dad, because I know that when women
say that they have an invisible illness, it very much is like,
yeah, it's in your head. You're just, like, losing it.
(17:45):
Like, please leave my ER But I feel like if it's a guy, they're
like, oh, my gosh, something must be wrong here.
We must figure it out. So I wonder if maybe even if
your dad was the one who startedgetting migraines, if it would
have changed anything for like even how you were treated as
well. Maybe I, I think migraine is
(18:05):
stigmatized as a female disease,which women are three times more
likely to get migraine. But I, I don't know because
like, my brother was also admitted to the hospital as a
child. And you know, there was also the
exact same level of gaslighting to the point where like the ER
(18:26):
doctors looked at my parents to see like, are these kids being
abused because there's nothing medically wrong with them?
And they're coming into the ER saying like, my tummy hurts and
a sign of a tummy hurts is maybeanxiety or a bad whole life to
where there's just a lot within our healthcare system of being
(18:49):
short staffed. And also just like migraine,
there's not a certain amount of weeks in medical school for
migraine. It is a few hours.
And migraine is one of the most common diseases in the world and
is also one of the leading causes for global disability.
(19:10):
But yet there's just no education in medical school to
really learn about migraine. And it's actually extremely
common in children, but it appears as an abdominal
migraine. So there's no head pain, there's
tummy pain. So it's just like, there's just
this overall lack of knowledge and education to be able to
(19:32):
treat migraine, especially in the ER.
Like that's such a generic medical field that even
neurologists aren't given like more hours to learn about
migraine. It's that if you want to get
treated by a headache specialist, there's only 700 in
the states that are specialized to treat migraine and headache
(19:55):
disorders. And that's because they went
through extra training to understand like what are the
symptoms? How do you treat it?
What are the new medications available?
So this is like this really big gap for the volume of people
that have migraine versus who could treat it effectively.
So I don't know. To answer your question, I don't
(20:15):
know maybe, but it's weird because hypolagic migraine is.
Identical to a stroke. Besides, there's just no stroke
in your brain. So I don't know if they would
have been like a different a different outcome at that point.
Yeah. I mean, I know you can't like
(20:35):
again, this isn't like a Hollywood movie where we would
then flashback to what would happen in an alternate universe.
But I, I really appreciate you explaining all that because I'm,
I'm learning a lot. So I'm assuming the listeners
are as well. But you're right, migraine is so
common. And I had no idea that there was
only 700 headache specialists essentially in the United
(20:59):
States, which is like sounds like a big number, but isn't if
you compare it to the amount of doctors.
And like you said, the doctors only have, you know, they're
like 01 time 25 years ago, I hadone class where we focused on
migraines and then I never thought about it again.
Huh. OK, so you were diagnosed as a
(21:21):
child, you went through this care unit at in your 20s and now
you're here. So like, tell me, tell me what
what your current current statusis.
Tell me what things you're using, what's working, what's
not. So with within four years in my
(21:42):
early 20s, I tried over 40 medications and I always like to
tell people like it is not your fault when a medication fails.
It is like the treatment didn't it failed you, you did not fail
the treatment. And it got to the point where
like I have tried every new my migraine medication.
(22:03):
Also really important like call out is that up until 2018 there
was not a migraine preventative medication available that
doctors would use like epilepsy medication or antidepressants to
treat migraine. 2018 was the first time a migraine prevention
medication came onto the market and available for people with
(22:24):
migraine. So it was a very big time.
So between like 2018, so like four years after that, so like
early twenty 20s, I tried all the new medications that came
out. There was multiple within that
time and I felt like my body wastelling me, Dina, you're done.
Like if you give me anything else like we're going to crash.
(22:47):
I'm extremely medication sensitive.
I will either break out in hivesor have AGI upset to where I
would start puking. So like medications and me just
like don't mix very well. And I was on the latest
medication that just came out onthe market and I started
experiencing Vertigo. I'm the only person that I know
(23:07):
experienced Vertigo with this medication.
So I just cut it off. I said I'm just done.
I'm done trying medications and like 4 weeks it was kind of
rough and then like something magical happening.
I just got better. Like I realized a lot of my
symptoms I've had since I was 3 was actually probably medication
side effects because medication side effects are the exact same
(23:30):
side effects of migraine. The dizziness, the fatigue, the
brain fog, they're just the symptoms overlap so heavily that
I never had a controlled environment to know.
Oh, this is actually isn't a migraine symptom.
It's a medication symptom. Through this time, like I had
two surgeries on my sinus that like that helped relieve a lot
(23:53):
of migraine pain for me. And then I also was diagnosed
with some issues with my menstrual periods.
So I got put on hormone treatments and that made like
the difference for my migraine. Like again, like doctors never
thought about like maybe a hormonal migraine.
It was just like things that never were thought about.
(24:13):
And once I got put on hormonal treatment, my migraine just
became more steady. Now I still live in a daily
state of a migraine like that doesn't go away, but I'm not
debilitated every day like I wasin my early 20s.
I have figured out kind of how to manage life with migraine
that I have my treatment of 1 egg spikes.
(24:34):
I take my meds, but I'm my dailypreventative is really like
managing my hormones to ensure that like the moment I get off
the treatment, I could see like a huge spike in my migraine to
where it's like instead it's like within 48 hours, I'm
debilitated again. So my treatment plan now is like
(24:56):
really focused on just like maintaining that.
And then also like I have found I lead support groups for people
with migraine and I found that to be a really big help for my
chronic illness. It's that finding your community
and finding people that understand.
And I've been through the same tsunami as you.
(25:17):
It's like it's such a different feeling that when you leave the
support group, you know, you feel more empowered.
And it's also a lot of honesty that happens in the support
group. Someone told me, hey, Dina, I
think you have a bad doctor. I think you need to go get a new
Doctor. And I did.
And they were right. Like, I think there's just a lot
of power in surrounding yourselfwith people that truly
(25:40):
understand and are going to be blunt and frank with you versus
like when your parents tell you something, you know, you may not
take it as serious versus a colleague that tells you like,
it's just a different level of like acceptance of that
feedback. So that's kind of my treatment
plan now is like really focusingon like what I know triggers my
(26:03):
migraine. That was the other thing.
Like I didn't know what triggered my migraine because no
one ever educated me that weather, sleep cycles, like all
these things could affect your migraine.
So I've learned a lot on like what my triggers are, how to
manage it, the ones that that are manageable.
And then also just surround myself with a very positive
(26:23):
community that helps lift me up.And I also lift them up when
they need it. Yeah.
It sounds like even when you were kind of at the hospital,
you were talking about how it was so cool to be surrounded by
other people going through a similar issue.
And then now you're leading a support group and it's like the
(26:44):
same thing. You're being surrounded by
people who understand your experience.
And we're able to share insightsthat, like you said, perhaps you
would not listen to from family and friends, because sometimes
you really do need like an outside perspective to be like,
you're right, that doctor sucked.
I'ma get anyone. I I really appreciate you
(27:05):
sharing that because I think doing more research about your
condition, no matter how you're doing that, and then finding
other people in like a communityis so important and it's really
undervalued. I think when we talk about
tools, it's usually like, I takethis supplement, I have this
(27:25):
heating pad. I prefer this, this solve that
I, I got on Amazon. So it's like nice to hear things
that are free. You know what I mean?
Like you can go find a support group and that can be easy.
And like the the big thing is like you can maybe 20 to 45
minutes with a doctor, depending.
(27:47):
Like, is it your first time seeing that doctor?
Is it a follow up? They're never gonna have all the
time to tell you like go throughthe list of triggers and foods
to stay away from. But your support group are
knowledge and are knowledgeable about the disease and are also
experts in migraine. Like we're all our own experts
(28:07):
in our disease that there's a lot of power and sharing and say
like, hey, I'm starting this newmedication.
Has anyone been on it? Like what should I expect?
Or my insurance is declining my medication and I went through
the appeal process. Like what should I do now?
It's like being able to have a community that you could lean on
for guidance because it's just areally complicated life living
(28:31):
with a chronic illness rather, that's like figuring out how to
get medications or the side effects or dealing with
insurance. It's just a lot of emotions you
will go through with having a chronic illness that being
surrounded by people that also understand what it's like.
But also I've been there before and could guide you.
It's a really powerful tool, yes.
(28:53):
Absolutely. I I completely agree.
Is there anything else that you would like to share that has
been a help to you? A tool that you can you can
share with the listeners? I think my last thing is just
there's power in sharing your story.
And I say it comes with time to be willing to Share your story.
(29:17):
For a long time, I couldn't share my story without wanting
to cry because it was very emotional and very painful to
every open a can of worms that Ishoved in the pantry.
And I don't want to, I don't want to open it.
But in order to enact change, wehave to be loud as a community
and we have to raise awareness and break stigma in order to do
(29:38):
that. Like sharing your story has so
much power and there's a lot of a lot of gaslighting that
happens in the medical system. Like in order to break down
those barriers, sharing your story is so powerful.
So when you are ready, I encourage people to always share
their story and define Ave. to advocate because in order to
(30:00):
make change, there has to be advocacy work and raising
awareness that there is a problem.
But until there's a lot of loud noise, it's always going to be a
problem until everyone starts working towards like the same
mission of this is an issue and This is why and this is my
story. Yes, snaps for that.
That was that was such a good point.
(30:25):
And we live in an age where social media can be a tool to do
that. Like you can Share your story
and you could connect with otherpeople and like you said, we can
come together and make change and put forward bills that can
like do stuff in our healthcare system.
So thank you for sharing that. Speaking well, thank you so much
(30:50):
for having me. OK, see we're on the same
wavelength. I was going to say, Speaking of,
I mean, I really appreciate having you on the podcast.
If the listeners would like to go follow you and kind of hear
more about your story and your your advocacy work, where can
(31:12):
they do that? Yeah, so I'm on Instagram and
Facebook under the Migraine network, and I also have support
groups that are free and virtualthat anyone could join and you
could access them through my socials.
Yay. OK, the Migraine Network got it.
(31:33):
So for anyone out there who would like to maybe chat with
Dina, chat with some other migraine warriors, you can do
that. But otherwise, this has been
like such a cool episode. I feel like I've learned a lot.
Like I feel like you shared not only personal experience, but a
lot of really important information that like, I can
(31:55):
walk away and be like, OK, I know more about migraines, so
hopefully others get to do that.But otherwise, I'm Clark, this
is Dina, and this has been Chronically the sickest podcast
you know. That's all folks.
Thank you so much for listening.If you liked this episode, click
(32:18):
that follow up button on your podcast app of choice to get
notified every other week. You can find the podcast on
Instagram and TikTok at Chronically the Sickest Podcast.
Let me know if you have any questions or just want to chat.
I love hearing from y'all. Until next time, I'm Clark, and
this has been Chronically the Sickest podcast you know.
(32:43):
Disclaimer, this is a conversational podcast and while
we make sure our diagnosis journey, symptoms and treatment
plan, this is not medical advice.
If you have any questions regarding your health, please
reach out to your doctor and have a great day.
Hello folks, and welcome to Chronically the Sickest, the
podcast where we talk about all things that make us chronically
the sickest people we know. I'm Clark, your host.
It's nice to chat with you this week.
Join us as we dive into the episode, sit back, relax, and
enjoy the show. Welcome Dina to Chronically the
(00:33):
Sickest podcast. I am elated to have you here.
How are you doing? I'm doing well, thanks for
asking. How are you?
I am doing great. We, we just found out that we
are both on the West Coast, which rarely happens when I'm
recording virtually. So I'm, I'm, I'm glad you're
here. Likewise well to.
(00:53):
Start us off, Can you tell me a little bit about yourself so me
and the listeners can get to know you?
I reside in the Seattle area with my husband and two dogs
named Tater Tot and Waffles. Fun fact, both dogs are named
after potatoes because I love potatoes.
(01:14):
I've had chronic migraines sinceI was three years old, but
didn't get formally diagnosed until I was 15 and also a third
generation living with chronic migraine.
So I got really big into advocacy work during the middle
of all the disease craziness to give me kind of a purpose to
live with migraine. And that is how I came across
(01:37):
your podcast is when I started really sharing my story on
social media and felt like this would be a great Ave. to also
raise more awareness about migraine.
Yes, absolutely. OK, first of all, absolutely
love your little your little dognames.
Oh my goodness. I'm also a fan of potatoes and
(01:57):
I'm a fan of those names. It's hilarious.
Yes, waffles are short for waffle fries.
Of course. Well, you said that and you were
like tater tots and waffles and I was like, right, sounds like a
great brunch like to have. And then you were like waffle
fries. And I was like, Oh my gosh, even
better. OK.
(02:19):
And it's also, Oh my gosh, I can't wait to get into your
story because that already sounds insane to say that you've
had chronic migraines since you were essentially a toddler and
that it's like genetically predisposed at this point.
OK. Also, I'm so glad that you are
(02:41):
here and that we were able to connect over social media.
It's such a great Ave. like you said, to like, not only raise
awareness and like advocate, butmeet other people who are
dealing with similar things. Yes.
Exactly. I have really expanded my
network since I started sharing my story and it's been great
connecting with just so many people really throughout the
(03:02):
globe that also spend in like a similar situation that I have
been in. Yeah, yeah.
OK. I have to ask the the big
question, which is what do you think makes you chronically the
sickest person you know? I've thought hard on how to
answer this. I didn't know whether to go
funny or serious so I'm going totry to go in the middle.
(03:23):
I think by the age of seven I'vehad every test done to my
stomach. Also a colonoscopy, which is
very rare to have a colonoscopy at such a young age.
So I would say I just have had anumerous tests done to me by the
age of 7 because migraine is invisible and there's not a
(03:43):
medical test to show that this person has migraines.
So I went down a rabbit hole of numerous tests and still to this
day I've had probably a lot of colonoscopies, more than the
average because I also have irritable irritable bowel
syndrome. So I think I've seen it all.
Nothing surprises me at this point within my journey that
(04:05):
there's always something new. Oh.
My goodness. OK, I kind of my first.
OK, OK, that answer was awesome.That really is the sickest
answer to be like, I've gotten acolonoscopy at age 7.
And that also fully led me to wanting to ask like, OK, if
(04:27):
you've had so many colonoscopies, I kind of want to
ask if you have any tips and tricks because at this point
that would be good to know. But sorry, I understand that's
not what this episode's about, but that was a great.
Answer well, I think it like my advice is good a bidet even when
you have a chronic illness because like your medications
(04:49):
affect your GI tract. Bidet is like I found a, I
discovered bidets like five years ago and I was like, wow, I
love these things. So that's my advice to anyone
that needs to go colonoscopy, get a bidet, then take get rid
of the stigma that it's a weird thing and once you go the big
day route, you're never going togo back.
(05:11):
Heard that. And it is so much more common in
other countries. So it's kind of funny that here
it's like, oh, no, we no, that'sweird.
We don't, we don't like that. But thank you.
That was great advice. OK, well, if you're offering
great advice about colonoscopies, I can only
imagine you're going to offer some great advice about chronic
migraines. So tell me a little bit about
(05:31):
your story. You said it started so young, So
what was that process like? So I'm the youngest of three and
my second oldest brother and I both started around the exact
same time. So he's two years older than me,
but he had head pain and severe light sensitivity and my symptom
was a tummy ache with severe vomiting at times.
(05:54):
So there is this puzzle that doctors had like what's wrong
with these two kids? The parents are perfectly
healthy. There's no medical history at
this point in time of any diseases.
So what's wrong with them? That kind of stuff is down the
rabbit hole of doing a lot of tests.
My brother had a EE G to check to see if you had epilepsy.
(06:15):
When you have migraine, it's normal for it to come back
abnormal because just how migraine also affects the brain.
So we were both diagnosed with fatigue malt epilepsy, which is
known as silent seizures. For majority of like my life all
the way up until 15, I was on anti seizure medications and
antidepressants to treat my symptoms and that's also known
(06:39):
to treat migraine. So like after age 7 I had a
pretty normal childhood because I was even though I was
incorrectly diagnosed, I was stillwell managed where my
chronic illness just didn't playthat big part of my life.
The funny thing is one of the doctors that saw us, he said
that this is a genetic disorder that your daughter to my mom is
(07:02):
going to get worse by the age of15.
Your son will outgrow it and either you or your husband will
end up with the disease even though he had the disease wrong.
That's exactly what happened. My brother got into high school,
outgrew the disease. I don't know if outgrew it is
the right word but as his body changed migraine just kind of
(07:23):
disappeared. I got re evaluated, diagnosed
with migraine. Fast forward to I turn 18, my
mom gets rushed to the hospital with stroke like symptoms and we
go down a rabbit hole of four years of fighting with doctors
as something's wrong with my mom.
Turns out she had hypolegic migraine which is a migraine
(07:43):
that mimics a stroke. So it was a very crazy thing
that like the doctor predicted what would happen, but having
disease completely wrong. And when my mom got diagnosed,
it became transparent that like,oh, her mom also had migraine.
But because of a language barrier, my grandmother was an
immigrant to the United States. She was never really able to
(08:06):
advocate that. Her head always hurt.
Growing up, my mom remember saying, like, my mom would just
need to go into a quiet room with black lights, dark lights,
lights out and just like decompress, that's a sign of a
migraine. Like if you can't be around
light, usually, you know, it's probably something going on.
So that kind of started my journey.
(08:26):
By the time I turned 20, my disease turned debilitating.
I moved away to college and I went to College in the middle of
nowhere. There was no neurologist, no
doctor to see me. So my mom came up and helped me
in. After that, my disease just
became a daily thing. It wasn't, it was episodic up to
I turned 20 and then my life just turned upside down on
(08:49):
trying to figure out how do I live with migraine while being
extremely medication sensitive and trying to find a doctor that
will help me because gaslightingand dismissiveness is just so
common when you have an invisible disease.
That is so crazy to essentially have a doctor, like prophesize
(09:09):
what's going to happen in your life and then have it happen
despite it not being correct butstill being correct.
Oh my goodness. So.
Did you get diagnosed around your 20s then with like migraine
Migraine or no you said it 15? I got diagnosed with 15 and then
(09:31):
I was re evaluated. I was admitted to the hospital
so I traveled to Chicago for help.
I already saw numerous doctors in the Seattle area and it was
just they weren't believing me. I asked to get referrals out and
the doctor should have told me Idon't think you're severe enough
for me to give you a referral out.
So I called an old doctor that Ihad a lot of trust in and said
(09:54):
like could you guide me on like where to go?
And he recommended a clinic that's in Chicago that just
treats migraine and headache disorders.
They admitted me into the hospital for 14 days and I was
re evaluated then and I was diagnosed with intractable
migraine, which is a migraine that once you get into a
migraine attack it lasts more than 72 hours.
(10:16):
For me, I was at the point of like I could never end an
attack. It was just a constant attack
for nine months. When I was admitted, it wasn't
like the goal to stay there for 14 days.
The goal was to stay until I could get my pain down from like
a nine to maybe A7. Like a 7 was like a realistic
goal and it just took 14 days ofnon-stop treatments to just try
(10:43):
to break my cycle of an attack. So that's awful.
I mean, I feel like migraines are fairly common and like you
said, someone goes, oh, you know, like I had a bad migraine
and I I went and lay down in a dark room for 24 hours and it
(11:07):
got a little bit better and now I can function.
But I mean, chronic migraine, yeah, lasts longer than a few
days, but to have it last monthsis awful.
So what did they do in that, like intensive program to help
with your with their migraines? Like what?
(11:28):
What got it to perhaps A7 or 8? So when you're admitted, they
will give you like what's known as like a migraine cocktail.
It's numerous IV medications to try to break down the cycle or
just like decrease your pain. It was every 8 hours I would
(11:48):
have to take medic medication, be given through the IV, and
then within the 8 hours before my next treatment, I could say
like, hey, I'm still in high pain.
Like give me something else. And like I had a list of things
I could pick from. And like, the goal is also to
try that list to know like once I get released from the
(12:09):
hospital, like what could be in my migraine tool kit to help me
at home. So the goal was really to try to
figure out one like I was on medication from when I was like
7 to when I was admitted, I was still on the same medication.
And to stop something when your body's been on it for over 15
(12:31):
years, like it's, it's not that easy.
Like your body becomes very dependent on it.
So like, that was the other partof the treatment plan was like
do a slow detox of this medication to make sure that it
wouldn't cause a huge attack, that my body wouldn't go into
full fight mode. That was the other part.
And then like also during the trip, during the
(12:53):
hospitalization, they had nutritionists come and talk to
me. I did biofeedback to learn how
to like, relax and try to calm down.
And also like, it's an entire hospital floor of just people
that are admitted for migraine. So you also get to connect with
other people. And it was like the first time
in my 23 years of living with migraine that I was surrounded
(13:16):
by other people with migraine. I never had that experience.
And that was like the first foot, like the first eye
opening. Like, oh, there's a whole
community of people out there. Like I didn't even know there's
different types of migraine or that foods could trigger a
migraine attack. I was just never educated on
that, even though I had the disease since I was a little
kid. Like a doctor never went
(13:38):
through, hey, you should be lookout for XYC.
Like these will make it worse. I never had that conversation
until I was 24. I mean, I'm so glad that after
all of those issues that you raninto with doctors in Seattle not
believing you, that you were able to, like, go to this
(14:02):
intensive migraine program and like you said, meet other
migraine spoonies and get to connect that way.
But it's just so frustrating to hear that you weren't given the
tools you needed to succeed and like the one tool you did have
was accidental and given for a different diagnosis so.
(14:24):
Yeah, it's like, it's also crazybecause like, I became a
caregiver for my mom and she went through all of this as
well. And the level I think that the
stigma I faced as a child still existed in the ER system when my
mom was admitted into the ER, it's like that hasn't changed of
(14:45):
like, but OK, you're not, you don't have a brain bleed.
Like we're releasing you. And I had a fight for the
doctors to say, no, you need to admit my mom.
Like she can't speak. Like there's something clearly
wrong with her. Don't just let her go just
because she's not having a stroke.
But you're saying she's having kind of like a stroke, but it's
not a stroke. So it's just the gaslighting and
(15:07):
dismissiveness still is very real, even though it was a huge
gap between like I was the patient versus I became the
caregiver. Yeah.
Thank you for touching on that. Because I, I can't imagine being
the caregiver for your parent and having to advocate for them
(15:30):
while you yourself obviously arekind of going through something
as well. But yeah, the ER system, the
healthcare system in general, isin need of an overhaul.
And we need to have more education for doctors and
nurses, but also like, we need more doctors and nurses so that
(15:52):
perhaps when people come in and they're like, it's not a stroke
or a heart attack and you go, yes, but something is still
wrong. They go, I had sex to suck.
You have a nice night. And you're like, can I say
something perhaps a little, a little a little crazy?
(16:15):
OK hear me out. I know y'all have food
allergies. This is a chronic illness pod.
I am aware of my audience. You're gluten free or dairy free
or something free or who knows maybe you just got diagnosed
with gastroparesis. What I do know is that belly
baking mixes are yummy and all the bad things free.
(16:37):
Plus they were made with collagen and other vitamins,
meaning they're not only not badfor you, they're good for you.
Click the link in the description to try them out and
get 20% off with code sickest onme.
The brownies are bomb by the way.
Y'all literally my favorite now that I think about it.
(16:58):
I may go make some right now anyway.
Your your your. Odd kind of doctor prediction
that was given where it's like one of your parents is going to
have this same diagnosis later down the line.
(17:21):
And obviously, like you said, all the things came true because
this is like some crazy Hollywood movie.
But I almost want to say, like, I wonder if it would be
different if it was your dad, because I know that when women
say that they have an invisible illness, it very much is like,
yeah, it's in your head. You're just, like, losing it.
(17:45):
Like, please leave my ER But I feel like if it's a guy, they're
like, oh, my gosh, something must be wrong here.
We must figure it out. So I wonder if maybe even if
your dad was the one who startedgetting migraines, if it would
have changed anything for like even how you were treated as
well. Maybe I, I think migraine is
(18:05):
stigmatized as a female disease,which women are three times more
likely to get migraine. But I, I don't know because
like, my brother was also admitted to the hospital as a
child. And you know, there was also the
exact same level of gaslighting to the point where like the ER
(18:26):
doctors looked at my parents to see like, are these kids being
abused because there's nothing medically wrong with them?
And they're coming into the ER saying like, my tummy hurts and
a sign of a tummy hurts is maybeanxiety or a bad whole life to
where there's just a lot within our healthcare system of being
(18:49):
short staffed. And also just like migraine,
there's not a certain amount of weeks in medical school for
migraine. It is a few hours.
And migraine is one of the most common diseases in the world and
is also one of the leading causes for global disability.
(19:10):
But yet there's just no education in medical school to
really learn about migraine. And it's actually extremely
common in children, but it appears as an abdominal
migraine. So there's no head pain, there's
tummy pain. So it's just like, there's just
this overall lack of knowledge and education to be able to
(19:32):
treat migraine, especially in the ER.
Like that's such a generic medical field that even
neurologists aren't given like more hours to learn about
migraine. It's that if you want to get
treated by a headache specialist, there's only 700 in
the states that are specialized to treat migraine and headache
(19:55):
disorders. And that's because they went
through extra training to understand like what are the
symptoms? How do you treat it?
What are the new medications available?
So this is like this really big gap for the volume of people
that have migraine versus who could treat it effectively.
So I don't know. To answer your question, I don't
(20:15):
know maybe, but it's weird because hypolagic migraine is.
Identical to a stroke. Besides, there's just no stroke
in your brain. So I don't know if they would
have been like a different a different outcome at that point.
Yeah. I mean, I know you can't like
(20:35):
again, this isn't like a Hollywood movie where we would
then flashback to what would happen in an alternate universe.
But I, I really appreciate you explaining all that because I'm,
I'm learning a lot. So I'm assuming the listeners
are as well. But you're right, migraine is so
common. And I had no idea that there was
only 700 headache specialists essentially in the United
(20:59):
States, which is like sounds like a big number, but isn't if
you compare it to the amount of doctors.
And like you said, the doctors only have, you know, they're
like 01 time 25 years ago, I hadone class where we focused on
migraines and then I never thought about it again.
Huh. OK, so you were diagnosed as a
(21:21):
child, you went through this care unit at in your 20s and now
you're here. So like, tell me, tell me what
what your current current statusis.
Tell me what things you're using, what's working, what's
not. So with within four years in my
(21:42):
early 20s, I tried over 40 medications and I always like to
tell people like it is not your fault when a medication fails.
It is like the treatment didn't it failed you, you did not fail
the treatment. And it got to the point where
like I have tried every new my migraine medication.
(22:03):
Also really important like call out is that up until 2018 there
was not a migraine preventative medication available that
doctors would use like epilepsy medication or antidepressants to
treat migraine. 2018 was the first time a migraine prevention
medication came onto the market and available for people with
(22:24):
migraine. So it was a very big time.
So between like 2018, so like four years after that, so like
early twenty 20s, I tried all the new medications that came
out. There was multiple within that
time and I felt like my body wastelling me, Dina, you're done.
Like if you give me anything else like we're going to crash.
(22:47):
I'm extremely medication sensitive.
I will either break out in hivesor have AGI upset to where I
would start puking. So like medications and me just
like don't mix very well. And I was on the latest
medication that just came out onthe market and I started
experiencing Vertigo. I'm the only person that I know
(23:07):
experienced Vertigo with this medication.
So I just cut it off. I said I'm just done.
I'm done trying medications and like 4 weeks it was kind of
rough and then like something magical happening.
I just got better. Like I realized a lot of my
symptoms I've had since I was 3 was actually probably medication
side effects because medication side effects are the exact same
(23:30):
side effects of migraine. The dizziness, the fatigue, the
brain fog, they're just the symptoms overlap so heavily that
I never had a controlled environment to know.
Oh, this is actually isn't a migraine symptom.
It's a medication symptom. Through this time, like I had
two surgeries on my sinus that like that helped relieve a lot
(23:53):
of migraine pain for me. And then I also was diagnosed
with some issues with my menstrual periods.
So I got put on hormone treatments and that made like
the difference for my migraine. Like again, like doctors never
thought about like maybe a hormonal migraine.
It was just like things that never were thought about.
(24:13):
And once I got put on hormonal treatment, my migraine just
became more steady. Now I still live in a daily
state of a migraine like that doesn't go away, but I'm not
debilitated every day like I wasin my early 20s.
I have figured out kind of how to manage life with migraine
that I have my treatment of 1 egg spikes.
(24:34):
I take my meds, but I'm my dailypreventative is really like
managing my hormones to ensure that like the moment I get off
the treatment, I could see like a huge spike in my migraine to
where it's like instead it's like within 48 hours, I'm
debilitated again. So my treatment plan now is like
(24:56):
really focused on just like maintaining that.
And then also like I have found I lead support groups for people
with migraine and I found that to be a really big help for my
chronic illness. It's that finding your community
and finding people that understand.
And I've been through the same tsunami as you.
(25:17):
It's like it's such a different feeling that when you leave the
support group, you know, you feel more empowered.
And it's also a lot of honesty that happens in the support
group. Someone told me, hey, Dina, I
think you have a bad doctor. I think you need to go get a new
Doctor. And I did.
And they were right. Like, I think there's just a lot
of power in surrounding yourselfwith people that truly
(25:40):
understand and are going to be blunt and frank with you versus
like when your parents tell you something, you know, you may not
take it as serious versus a colleague that tells you like,
it's just a different level of like acceptance of that
feedback. So that's kind of my treatment
plan now is like really focusingon like what I know triggers my
(26:03):
migraine. That was the other thing.
Like I didn't know what triggered my migraine because no
one ever educated me that weather, sleep cycles, like all
these things could affect your migraine.
So I've learned a lot on like what my triggers are, how to
manage it, the ones that that are manageable.
And then also just surround myself with a very positive
(26:23):
community that helps lift me up.And I also lift them up when
they need it. Yeah.
It sounds like even when you were kind of at the hospital,
you were talking about how it was so cool to be surrounded by
other people going through a similar issue.
And then now you're leading a support group and it's like the
(26:44):
same thing. You're being surrounded by
people who understand your experience.
And we're able to share insightsthat, like you said, perhaps you
would not listen to from family and friends, because sometimes
you really do need like an outside perspective to be like,
you're right, that doctor sucked.
I'ma get anyone. I I really appreciate you
(27:05):
sharing that because I think doing more research about your
condition, no matter how you're doing that, and then finding
other people in like a communityis so important and it's really
undervalued. I think when we talk about
tools, it's usually like, I takethis supplement, I have this
(27:25):
heating pad. I prefer this, this solve that
I, I got on Amazon. So it's like nice to hear things
that are free. You know what I mean?
Like you can go find a support group and that can be easy.
And like the the big thing is like you can maybe 20 to 45
minutes with a doctor, depending.
(27:47):
Like, is it your first time seeing that doctor?
Is it a follow up? They're never gonna have all the
time to tell you like go throughthe list of triggers and foods
to stay away from. But your support group are
knowledge and are knowledgeable about the disease and are also
experts in migraine. Like we're all our own experts
(28:07):
in our disease that there's a lot of power and sharing and say
like, hey, I'm starting this newmedication.
Has anyone been on it? Like what should I expect?
Or my insurance is declining my medication and I went through
the appeal process. Like what should I do now?
It's like being able to have a community that you could lean on
for guidance because it's just areally complicated life living
(28:31):
with a chronic illness rather, that's like figuring out how to
get medications or the side effects or dealing with
insurance. It's just a lot of emotions you
will go through with having a chronic illness that being
surrounded by people that also understand what it's like.
But also I've been there before and could guide you.
It's a really powerful tool, yes.
(28:53):
Absolutely. I I completely agree.
Is there anything else that you would like to share that has
been a help to you? A tool that you can you can
share with the listeners? I think my last thing is just
there's power in sharing your story.
And I say it comes with time to be willing to Share your story.
(29:17):
For a long time, I couldn't share my story without wanting
to cry because it was very emotional and very painful to
every open a can of worms that Ishoved in the pantry.
And I don't want to, I don't want to open it.
But in order to enact change, wehave to be loud as a community
and we have to raise awareness and break stigma in order to do
(29:38):
that. Like sharing your story has so
much power and there's a lot of a lot of gaslighting that
happens in the medical system. Like in order to break down
those barriers, sharing your story is so powerful.
So when you are ready, I encourage people to always share
their story and define Ave. to advocate because in order to
(30:00):
make change, there has to be advocacy work and raising
awareness that there is a problem.
But until there's a lot of loud noise, it's always going to be a
problem until everyone starts working towards like the same
mission of this is an issue and This is why and this is my
story. Yes, snaps for that.
That was that was such a good point.
(30:25):
And we live in an age where social media can be a tool to do
that. Like you can Share your story
and you could connect with otherpeople and like you said, we can
come together and make change and put forward bills that can
like do stuff in our healthcare system.
So thank you for sharing that. Speaking well, thank you so much
(30:50):
for having me. OK, see we're on the same
wavelength. I was going to say, Speaking of,
I mean, I really appreciate having you on the podcast.
If the listeners would like to go follow you and kind of hear
more about your story and your your advocacy work, where can
(31:12):
they do that? Yeah, so I'm on Instagram and
Facebook under the Migraine network, and I also have support
groups that are free and virtualthat anyone could join and you
could access them through my socials.
Yay. OK, the Migraine Network got it.
(31:33):
So for anyone out there who would like to maybe chat with
Dina, chat with some other migraine warriors, you can do
that. But otherwise, this has been
like such a cool episode. I feel like I've learned a lot.
Like I feel like you shared not only personal experience, but a
lot of really important information that like, I can
(31:55):
walk away and be like, OK, I know more about migraines, so
hopefully others get to do that.But otherwise, I'm Clark, this
is Dina, and this has been Chronically the sickest podcast
you know. That's all folks.
Thank you so much for listening.If you liked this episode, click
(32:18):
that follow up button on your podcast app of choice to get
notified every other week. You can find the podcast on
Instagram and TikTok at Chronically the Sickest Podcast.
Let me know if you have any questions or just want to chat.
I love hearing from y'all. Until next time, I'm Clark, and
this has been Chronically the Sickest podcast you know.
(32:43):
Disclaimer, this is a conversational podcast and while
we make sure our diagnosis journey, symptoms and treatment
plan, this is not medical advice.
If you have any questions regarding your health, please
reach out to your doctor and have a great day.
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