0:00

They minimize or underestimate the days

0:02

where they can function because they want the attention

0:04

to be on fix the thing that makes my head feel like I'm

0:06

going to explode . And so

0:08

they get to me and I take a comprehensive

0:10

headache history and I go oh my gosh , you're actually having

0:13

headaches every day . Oh , yeah , yeah . But and

0:15

right again jump to wanting to only talk

0:17

about the ones where they can't handle it and then

0:19

say , no , no , we got to back the truck up . We've got a lot more

0:21

to talk about here .

0:22

How often has someone dismissed your headache

0:25

pain or your migraine pain or

0:27

has tried to compare it to their own ? Many

0:30

of us have struggled or are struggling to get a diagnosis

0:32

for whatever condition we live with , and

0:35

while this episode we talk about migraines

0:37

and concussions , it's for all of us . Tim

0:40

here , and thanks for tuning into another episode of

0:42

the Invisible Condition Podcast , where we talk

0:44

about advocacy and unusually normal things

0:46

the conditions , diseases and

0:52

illnesses we live with . We will end the stigma of invisible conditions by

0:54

empowering voices , and today's voice is brought to us by Dr

0:56

Briar Sexton . Dr Briar Sexton is a licensed and registered

0:59

physician here in British Columbia and

1:01

in today's episode we discuss the complexities

1:03

of chronic migraines and concussions . Did you we discuss the complexities of chronic migraines and concussions

1:05

? Did you know that many people

1:08

with chronic migraines rank their quality

1:10

of life as low as those with severe

1:12

strokes or daily dialysis

1:14

? Yet countless struggle to get a

1:16

proper diagnosis ? In

1:18

this episode , we explore practical strategies

1:21

for managing these conditions and we're

1:23

going to empower you with

1:25

the knowledge to advocate for your health

1:27

. Have a listen . Well

1:30

, dr Sexton , I am eager

1:32

to get into the conversation today , but

1:34

first , before we get into the conversation

1:36

about migraines and concussions . Thanks

1:40

for joining me . I know you're busy and so thanks

1:42

for taking the time to chat with

1:44

Invisible Condition about two

1:46

very prominent

1:49

diagnoses here in Canada and in the

1:51

US .

1:52

Well , you know , I'm a fan of your work and also I

1:54

think this is such an important topic that it

1:56

behooves us , as physicians , to make time

1:58

for it and to try and reach as wide

2:00

an audience as we can , because lots

2:02

and lots of people who are living with chronic migraine

2:04

one of the biggest issues is they don't get diagnosed

2:06

, so they're not even accessing

2:09

potential treatments .

2:11

Yeah , not even get diagnosed . We're going to get into

2:13

that because that is , you know , when

2:15

I hear that and I have friends who have

2:17

various ailments and are

2:19

struggling to get a diagnosis and it breaks

2:21

my heart . And you know I'm doing

2:24

some work in the self-advocacy space and that's a broad

2:27

topic and it's a hard topic and it varies

2:29

for everybody in a different

2:31

way . But we're going to get

2:33

into that a little bit . But let's talk about

2:35

migraines . You know you do a lot of work with migraines

2:38

concussions , eyes

2:40

, all sorts of stuff but let's just talk

2:42

about migraines . Why don't we just

2:44

provide a definition and

2:47

what you have seen with your

2:49

patients ?

2:50

So I think the important thing is , most people will

2:52

have a sense of what a migraine is , and

2:54

most people who are listening will think of it as being

2:56

an acute headache that occurs

2:58

episodically , that puts

3:00

people on the floor in a dark

3:03

room , sensitive to sound , sensitive to light

3:05

, nauseated , generally

3:07

thought to be only on one side of the head and

3:10

generally lasting for several hours , and

3:12

that is a good definition of an acute

3:14

, episodic migraine . But that's only one

3:17

of many , many forms of migraine

3:19

, and the one that I end up treating

3:21

most often is what's called

3:23

chronic migraine . Chronic

3:25

migraine is characterized

3:29

by having lots and lots and lots of days

3:31

of headache in a month . It's not just one or

3:33

two or a few days around your period

3:36

, or migraine if you had an extra

3:38

drink at the office Christmas party . These

3:40

are people who are living with severe , debilitating

3:43

headaches up to daily . These

4:00

are people who are living with severe , debilitating headaches up to daily , and these guys are really sick .

4:01

They are sick enough that if you give them quality of life scales , they rank themselves

4:03

as ill as somebody who's had moderate to severe stroke or somebody who has to have chronic daily dialysis

4:05

for kidney failure . Wow , so I have experienced that acute migraine and I could tell

4:07

it happens every couple of years , I don't know . Maybe we could

4:10

talk about why . Why are migraines

4:12

caused ? You know , it comes on . Usually it's my

4:14

left eye and it goes . I

4:16

lose my vision and I know something's

4:18

coming . And but

4:20

what causes it ? Is there known causes

4:22

for migraines ?

4:24

So migraines described as what's called a neurovascular

4:26

headache , and sometimes they're just hitting your

4:28

DNA bad luck . Sometimes

4:31

they're caused by triggers

4:33

, and triggers work a few different ways . I

4:35

mean , you're a smart guy . If every

4:37

time you had a glass of orange juice you got a migraine

4:40

, you'd figure out not to have a glass of orange juice . But

4:43

migraines can be multifactorial

4:45

. So maybe you're okay to have a glass of orange

4:47

juice , but not on a day when your blood sugar is really

4:50

low because you haven't eaten lunch and

4:52

it spikes it right up high

4:54

and that that causes the migraine . Or

4:56

maybe you can have a cup of coffee , but

4:58

not on a day when you're hyper-stressed and you didn't

5:00

sleep well . So one of the first things I

5:02

encourage anybody with migraines to do is to keep

5:05

a diary Because , quite frankly , if

5:07

you get there every couple of years , I don't think

5:09

you're going to remember that you had a ham sandwich on the same

5:11

day two years ago . You know it's

5:14

just putting it into the phone

5:16

of what happened that day , how you slept , how

5:19

you were feeling lots and lots of common

5:21

food triggers , and so

5:24

we talked about . You know , trigger could be obvious , what

5:27

we call kind of dose response Trigger

5:29

can be multifactorial . Things could be okay

5:31

on some days but not others . But

5:33

the other kind of classic example would

5:36

be somebody who's put on a new medication and

5:39

the most classic example would be

5:41

birth control , because hormones are hormonal

5:43

and so somebody goes from having

5:45

two or three headache days a month till 10

5:47

headache days a month , and a lot of

5:49

times they don't think about being the medication

5:52

because , well , it's 10 headache

5:54

days a month , it's not 30 headache days a month

5:56

, and I take the pill 30 days a month . So

5:59

that's where the trigger acts to

6:01

lower your threshold to have a headache , so you

6:03

get them more easily than you did without the presence

6:05

of that trigger . So when I'm giving

6:08

patients triggers things like nitrites

6:11

in food and nightshades and processed

6:13

food I say you've got to pull

6:15

everything like that out for at least three weeks to

6:17

see if it's playing a role in your headaches or not .

6:20

Three weeks . Yeah , as someone who

6:22

lives with Crohn's disease , a food journal , knowing

6:26

it's not just food , it could be other things . Yeah , as someone who lives with Crohn's

6:28

disease a food journal and knowing it's not just food , it could be other things , it could be stress

6:30

, it could be sleep , it could be you name it and

6:32

keeping that all in your

6:34

mind of trying to remember everything . So

6:36

that's really important . Jot it down .

6:39

It will . And especially , I mean

6:41

we've got patients . I've got patients who get

6:44

weekend migraines and it's because

6:46

they've changed their sleep schedule and migraines

6:48

like schedule and they like routine and they don't like

6:50

it that you've decided to sleep in until 9

6:52

o'clock instead of 7 am . So

6:54

sometimes we get rid of their headaches by having them get up

6:56

at 7 am , walk around

6:58

for 15 minutes and then go back to bed and enjoy their

7:00

lie-in .

7:03

Wow , really so it's

7:05

. Wow . I did not

7:07

realize that .

7:13

Lots of visual triggers . I've got patients who reliably will get migraines if they're scanning rapidly

7:15

on a grocery store aisle under fluorescent lighting . Patients

7:17

whose migraines will get set up by watching

7:19

the columns of a bridge flicker by

7:22

or by dappled light when they're mountain

7:24

biking and the light's coming in and out of the trees

7:26

. I mean they're pretty

7:28

beastly .

7:30

Yes , well , I'm really

7:32

curious . I've had

7:34

friends not myself , but I've heard this secondhand

7:36

, thirdhand people going to a

7:38

doctor and saying hey , I've been battling

7:41

bad headaches , migraines . I've

7:43

been battling bad headaches , migraines

7:45

, and I've heard and I've had friends who weren't

7:47

believed by their doctors . How

7:50

do you even describe this , right , if it's debilitating

7:52

, whether it's an acute episode

7:55

or something that's more chronic ?

8:10

how do you approach your doctor and say , hey , this is what I'm living with ? I mean , I would say that one

8:12

of the issues is because we think of migraines , and even a lot of really good GPs think about migraines

8:14

as being acute and episodic . That certainly is what I would have known about

8:16

when I got out of medical school . When

8:20

they hear the headaches are daily , migraine

8:22

just doesn't pop into their head . So part

8:24

of it is we need to educate our doctors better

8:27

. They can't know everything . My dad was a GP

8:29

. It's an incredibly broad field . So

8:31

the estimate is that one in 40

8:34

Canadians about a million people are living with

8:36

undiagnosed migraine and I

8:38

don't think that they're walking into their GP and saying

8:40

I have chronic migraines and the GPs

8:42

are saying no , you're not . And saying

8:44

I have chronic migraines and the GPs are saying no , you're not . I think that that is one

8:46

of the issues . And then the other way it gets missed

8:48

and I see this all the time is I've

8:51

got patients who get headaches every

8:53

day . There's maybe three or four out of 10 . And

8:55

so in my world that's a low-grade migraine

8:58

if they also get five or six days of super

9:00

painful headache and what they

9:02

want the GP to do is fix the days where they

9:04

can't function . So they

9:06

minimize or underestimate the days where

9:08

they can function , because they want the attention

9:10

to be on . Fix the thing that makes my head feel like

9:12

I'm going to explode . And so

9:15

they get to me and I take a comprehensive

9:17

headache history and I go oh my gosh , you're actually having

9:19

headaches every day . Oh yeah , yeah . But

9:21

and right again jump to wanting to only

9:23

talk about the ones where they can't handle it and then

9:25

saying , no , no , we got to back the truck up . We've got a lot

9:27

more to talk about here . But

9:30

I would do things like you said keeping a headache

9:32

diary , looking for triggers , going into your

9:34

gp with a month worth of data to say this is

9:36

how often I had a headache last month , and

9:38

and and to make sure that's the reason you're there

9:41

. That's what you want to talk . Talk about it's not a sidebar

9:43

to you know , the fact that you happen

9:45

to have a sinus cold or you're worried

9:47

that you've got a chest infection , and

9:50

I think if you're still having

9:52

trouble , you may say like , look

9:55

, you're so good at so many things . That's why I'm a GP

9:57

. But you know , do you think I could benefit

9:59

from seeing a headache specialist Like could we just get an extra

10:01

set of eyes on this ?

10:06

specialists like could we just get an extra set of eyes on this ? Yeah , I was recording

10:08

with a doctor . We've released the episode months ago and so I was talking

10:10

about second opinions , asking for that second opinion

10:12

, and what she said was really

10:15

struck me . Was both doctors

10:17

right ? If they're ? If they don't know

10:19

, they will send you that specialist . If

10:22

, if they are confident in their diagnosis

10:24

, they have no problem sending

10:26

you for that second opinion . It's

10:29

when a doctor say what you don't trust me or you don't

10:31

believe in me , that's when you should be like okay , maybe

10:33

I need to push for this , but what I'm hearing you

10:35

say is like asking right

10:37

, keeping that journal and I've heard this for even

10:39

all the self-advocacy questions I've been

10:41

asking people is is write

10:44

it down , bring that to your doctor

10:46

, present it and say here's what's

10:48

going on , and don't discount those quote

10:50

unquote good days . You know in the pains that three

10:52

or four I know this with arthritis

10:54

I see my specialist soon and she's

10:57

going to ask how are you feeling ? And it's like

10:59

well , today's a good day , but two days ago I couldn't walk

11:01

. But today's a good day it's

11:03

focusing not just on that one

11:05

day , but over that collective period of time

11:08

.

11:08

And I think you know one of the things that's worth noting is

11:10

from a patient health and well-being

11:13

perspective . By only focusing

11:15

on the days you can't get through and minimizing the

11:17

days you can , you are doing the best thing

11:19

you can to look after yourself by being positive

11:21

and finding the good and doing all the things we'd

11:23

encourage you to do .

11:28

It just doesn't help us , as your

11:30

doctor , to figure out what's going on . Yeah

11:32

, yeah , you're absolutely right . If you just go to your doctor and say , oh , today's a great day

11:34

, but you know , you discount those those other days , it doesn't make your job

11:37

any easier , does it .

11:38

No , and to add to the idea of asking for

11:41

a second opinion , I'd say a couple of things and

11:43

the first thing I would say is that it

11:45

is all about how you , you know , it's not that

11:48

I , it's not that I'm second guessing , I'm just wondering

11:50

could there be a new treatment that you know

11:52

you're on top of a million other things

11:54

and maybe this neurologist would know about

11:56

that ? You haven't yet , like

11:59

I , you know ? Is there any way that I could

12:01

just go once and get some questions answered by

12:03

somebody who sees a huge number

12:05

of patients with this type of condition ? And

12:08

certainly for anybody who's listening who has concussion

12:10

, I would say that at

12:12

a baseline , excellent , brilliant GPs

12:15

don't get training on how to treat chronic migraines

12:17

, so a lot of them either

12:19

don't know how or aren't comfortable with some of the medications

12:21

, and that's said with a lot of respect . But

12:24

the second tier is I have

12:26

all these patients and I mean this happened to me

12:28

when I was first really treating

12:30

a lot of patients with migraine . I would

12:32

think about the migraine patients one way and the

12:34

concussion patients with headache another way , until

12:36

it kind of went wait a minute . These

12:39

guys walk and talk and behave just

12:41

like my migraine patients . They just happen to have

12:43

the problem start after they hit their head rather

12:46

than when they hit their period . And

12:49

how are these two different subtypes of patient

12:51

? And there seems

12:53

to be very , very few

12:55

practitioners who are aggressively treating

12:57

post-concussive headaches that

13:00

, last past the 30-day , mark the

13:02

way that they would treat chronic migraines

13:04

, even though , as I said , they both

13:06

walk like a duck and talk like a duck .

13:09

Well , that's a great segue , because concussions

13:12

is something I'm passionate about . I've never experienced

13:14

one I was actually thinking about this this

13:16

weekend have I experienced a concussion , and I can think

13:18

of one scenario where

13:21

I had a terrible accident and I'm

13:23

sure I had some damage . There's

13:25

something going on , but I never sought medical

13:27

attention for it . Is there an

13:30

overlap , as you said ? There is that overlap between

13:32

migraines

13:34

and concussions and how

13:36

have you seen maybe a

13:39

misdiagnosis or how

13:41

does that overlap ? How

13:43

is that prevalent in the work that you do ?

13:46

so I would say um , I'm going to start with just

13:48

some definitions , so everybody's on the same page so

13:52

the first thing is you can have chronic headaches

13:54

after an accident and not have a concussion

13:56

or mild traumatic brain injury . You can have something

13:58

called chronic post-traumatic headaches , where

14:00

the headaches are started by the accident . The accident's

14:03

the cause , whether that's a

14:05

sport accident , motor vehicle accident . It

14:07

banged your head on a top shelf in your house . So

14:10

you can have headaches without jumping to

14:12

concussion or mild traumatic brain injury

14:16

. A lot of time presenting complaint is headache

14:18

. People start to call it concussion . That's

14:20

a dangerous rabbit hole for a lot of reasons . The

14:22

first is when you tell people they have a concussion

14:24

, then memory loss because their head is

14:26

pounding becomes memory loss because they have a brain

14:28

injury . Word finding difficulties

14:31

because their head is pounding becomes word

14:33

finding difficulties because they have a brain injury

14:35

. So you can spiral somebody into thinking

14:38

that they are sick for a different

14:40

reason than they are . Concussion and

14:42

mild traumatic brain injury is

14:44

overdiagnosed and the new

14:46

diagnostic criteria for it are quite clear

14:49

, and so to

14:51

meet the threshold for that diagnosis you

14:53

have to have amnesia that

14:56

dates back from the accident or for

14:58

a period of time after the accident , a

15:01

loss of consciousness or

15:03

something called an altered state of consciousness , and

15:06

historically , before the new diagnostic criteria

15:08

came out in May of 2023 , people

15:10

will go how did you feel after ? And you'd say I was

15:12

dazed , I was confused , I couldn't figure

15:15

out what happened . Those are all normal

15:17

ways to feel after you've been rear-ended by somebody

15:19

going 80 kilometers an hour . That's not a

15:22

mild traumatic brain injury . If

15:24

somebody came into my office and said I knew exactly

15:26

what had happened , I was crystal clear on

15:28

my thinking and I immediately started

15:30

to . You know track my ICBC

15:33

claim in my head . Or I

15:35

knew that I'd been hit by this big linebacker

15:37

. I remember . You know it's even

15:40

like athletes they get hit from nowhere , they

15:42

get hit from behind . They're completely confused

15:44

about what happened . But an altered

15:46

state of consciousness is somebody who can't

15:49

follow two-step commands , who

15:51

isn't oriented to day or place , who

15:54

has an acute confusion or

15:56

irrational anger . I

15:59

know you pretty well . If you

16:01

get rear-ended , you're not the guy I think is going to get out

16:03

of his car , run back and start punching the person

16:05

behind them in the face through the window

16:08

. If you did that , I would diagnose

16:10

that as an altered state of consciousness . Now

16:12

, some of my other patients maybe not . Maybe that's just

16:14

a Wednesday right , but that's

16:16

clearly out of character .

16:18

Yeah , interesting . So it's really that something

16:21

, not just out of character , something that is

16:24

when you lose that consciousness . And so

16:26

you said has concussions

16:28

been overdiagnosed then , or has it

16:30

been underdiagnosed ?

16:32

I would say that concussion is overdiagnosed

16:34

and it's often retroactively diagnosed

16:37

wrong . So I'll see

16:39

somebody who didn't

16:41

have anything other than headaches initially

16:44

, and then they get deconditioned

16:46

, the headaches are bad . They're not going

16:48

to the gym , so they're not in the same shape

16:50

that they were . So pain is getting worse and not

16:52

getting better and as

16:55

time from the accident when they can't go to work lengthens

16:58

, they can't return to sport , can't

17:00

do the things they love with their loved ones

17:02

. Often that causes very

17:05

legitimate depression , very legitimate

17:07

anxiety . Often they become

17:09

progressively stressed . Sleep becomes

17:11

progressively poor . So a

17:13

year and a half later they go into a doctor's

17:15

office who's busy and doesn't have a lot of time . They

17:17

say what happened after the accident ? I

17:19

got headaches , I stopped sleeping , I

17:22

lost my memory , no-transcript

17:50

after an accident . But we didn't want to call it

17:52

a mild traumatic brain injury . Well , now

17:54

those terms are interchangeable . So you

17:56

have to hit that threshold in order to get that medical

17:59

diagnosis which isn't to minimize people

18:01

who have ringing in their ears after an accident , blurred

18:03

vision after an accident and all sorts of other symptoms

18:06

along with their headaches that

18:08

often are primarily headache related

18:10

. And if you treat the headache , you treat the symptoms . You don't

18:12

need to call it something that it's not

18:14

.

18:15

Fascinating . So this just came out , this new

18:17

diagnosis criteria in 2023

18:19

. And I'm curious

18:22

have you had any conversations

18:25

with people about ? Well

18:28

, I've had concussions . So what is

18:30

this now ? Am I getting undiagnosed

18:32

, or how does that even work ?

18:35

It's keeping in mind that concussion

18:37

is one of the invisible diseases

18:39

, right ? It's incredibly sensitive

18:41

from the perspective that the

18:44

number one thing that somebody with chronic migraine

18:46

or chronic concussion identifies

18:48

as a fear is that people think they're making

18:50

it up or they think that they're

18:52

crazy . So some of the

18:54

toughest conversations that I have are

18:57

introducing to somebody that there

18:59

may be a component of anxiety that's contributing

19:01

to their headaches , because that

19:03

doesn't invalidate that the headaches are real and

19:06

they're awful and they're ruining

19:08

quality of life . But if

19:10

anxiety is maybe part

19:12

of the barrier to the treatment of the headache , would it

19:14

be worth exploring , just thinking about whether

19:16

or not treating that might treat the headache ? And

19:18

it might or it might not , I don't know . But

19:20

why wouldn't we try ? And then you

19:23

know , to tell somebody who's been diagnosed with a concussion

19:25

hey , the criteria changed . I

19:27

know that a year ago , when you said you were dazed , we

19:29

took your word for it and we called you brain injured

19:32

. But now dazed means something different

19:34

. It's very invalidating , it's

19:38

insensitive , and so

19:40

I don't like to have that conversation unless

19:42

I absolutely have to , because I have to put something

19:44

down on a form or or

19:46

or . But I'll try and frame it to some

19:48

extent as good news . I don't think he did because

19:50

of this , this and this , and I think that

19:52

the headache is the primary problem . I

19:54

think that , and sometimes they've got really good insight

19:57

, like I'll say how's your memory on the rare

19:59

days you're not having a headache ? Oh , it's good , doc

20:01

. So that's not what my brain injury patients

20:04

tell me , that's what my chronic migraine patients

20:06

tell me . So

20:09

, yeah , and so it's a trust issue

20:11

, it's how you have the conversation and it's a hundred percent

20:13

making sure you don't invalidate the fact that this is somebody

20:15

who's in pain and having symptoms after a trauma

20:17

.

20:18

Well , I love that you said that you don't want to invalidate

20:20

someone . You know , I couldn't imagine if

20:22

, after many years , my rheumatoid

20:26

or my doctor

20:28

said , oh , actually you don't have arthritis

20:30

, like okay , so we've been

20:32

treating it with medication , with all this stuff

20:35

, and all of a sudden like yeah , you invalidate

20:37

someone , but also then that you break

20:39

that trust as well . So I think

20:42

, from your perspective as a

20:44

doctor , a medical practitioner , there's

20:46

a lot of sensitivity that needs to go into

20:49

having these hard

20:51

conversations , whether it is a diagnosis or

20:53

a change of path

20:55

or a change of direction .

20:58

Very much so , and I think

21:00

it's something , as I said

21:02

, said , that you can say okay , well

21:04

, they change the diagnostic criteria , but it

21:06

doesn't change what's happened for the patient for the last

21:08

three years in any way yeah , it doesn't invalidate

21:11

how someone is it's feeling , like if somebody

21:13

said , hey , tim , well , this is , you

21:15

don't have x , y or z .

21:18

Well , I still feel that way , I'm still struggling

21:20

, I still have this pain . So now

21:22

, what is it ? Let's go and explore that . Let's

21:25

get to the root of that problem .

21:27

And it's interesting , you know , with that concussion

21:29

diagnosis , a lot of times I

21:32

will see somebody who's been very fit their

21:34

entire lives . They're an athlete , they're a

21:37

weightlifter , they're a runner , and

21:39

the injury just knocks them out of all of that

21:41

and so they physically

21:43

don't feel like themselves . They're

21:46

more fatigued because they're not getting exercise

21:48

, which often means they're not getting

21:50

good sleep . Maybe they're not getting good sleep for other

21:52

reasons they do . They feel like they're in

21:54

a cognitive fog . They may have a little bit

21:56

of depression , which is almost I

21:59

can't imagine . If I woke up every day and my head

22:01

was pounding and I had to give up my work

22:03

, I had to give up my friends , I had to give up my activities

22:05

that even one of our most

22:08

resilient individuals wouldn't have lower mood

22:10

than they did before the trauma

22:12

. And , as I said , very

22:15

difficult , because as soon as you enter that

22:17

mental health aspect , they think that you're saying

22:19

there is no other injury , whereas

22:21

they're saying no , it's running in parallel

22:23

. Here we want to tackle both things

22:26

. But one of the most

22:28

evidence-based things

22:30

that we know about concussion is that people who

22:32

are able to actively rehabilitate it do

22:34

better than people who passively rehabilitate

22:37

it . But if you used to

22:39

go to the gym , pick up the bench press and

22:41

do X or throw the treadmill onto

22:43

his Y miles an hour and it

22:45

was nothing . And now that makes you feel like you've been

22:47

hit with a baseball bat . If you've never

22:49

been out of shape in your life , you don't know that . That's how

22:51

out of shape people feel . That's not a concussion

22:54

necessarily . It's how it feels

22:56

when you don't exercise regularly .

22:59

This podcast is supported by storiedworkcom

23:01

. Do you ever struggle to get your thoughts

23:03

written down in a clear and structured way ? I

23:06

often do , and when I'm planning my podcast

23:09

scripts or articles , I have so many

23:11

ideas in my head and I struggle to get them organized

23:13

in writing . With Storied , all

23:16

I need to do is speak in my thoughts and the tool

23:18

automatically organizes my ideas . I

23:21

love it because it provides feedback and prompts

23:23

me to fill in any gaps , to make my message crystal

23:25

clear . Storied was founded by a dyslexic

23:27

physicist who needed a new kind of tool to write

23:30

. What their team discovered was that

23:32

seeing your thoughts and ideas turn into clearly

23:34

structured texts unlocks potential

23:36

for almost everyone . If you're having trouble translating

23:39

your thoughts into clearly written content such

23:41

as articles or social posts , your

23:43

thoughts into clearly written content such

23:45

as articles or social posts , try Storied

23:47

for free . Go

23:54

to storiedworkcom . It's so complex , isn't it ? I don't envy your job . It's

23:56

just so complex and there's so many different factors that go into

23:58

it . And that's hard , especially when you tack

24:01

on migraines or concussion

24:03

with some

24:05

mental health stuff or , like you said , even in

24:07

that example , maybe

24:10

your body is starting to get

24:13

a little soft and you're not used to that . It's

24:16

got to be challenging .

24:17

I mean , I

24:20

certainly feel more for the patients than I do for myself

24:22

. But to your point , when I'm able to

24:24

help somebody with chronic migraine

24:27

or concussion , it's one of the most gratifying

24:29

things I get to do . And I can tell

24:31

you that it wouldn't matter with those patients

24:34

If I'm

24:36

running half an hour behind . They're not going to

24:38

yell at me . They

24:40

know I'm behind because I'm trying to

24:42

help somebody like them . And if they've been helped

24:44

, boy are they happy . I can tell

24:46

when I walk into a room after

24:49

I've done a medical intervention

24:51

or a lifestyle intervention for somebody with concussion

24:53

or migraine , if it's worked . I know

24:55

before they tell me their their face looks different

24:58

, that pain mask is gone . You

25:00

know I , I would reliably say I can tell

25:02

before they've opened their mouth , 90% of the time

25:04

if they're going to give me good news . And

25:07

you and I were talking offline about

25:09

you know how do you deal with

25:11

the challenge of treating it , because

25:14

there are real significant

25:16

barriers to treating it and I don't know if you want me to get into

25:18

that a little bit .

25:19

Yeah , let's do it , especially like

25:21

it's a good segue because you

25:23

highlighted this , that this is an invisible

25:26

condition . But

25:28

also I like how you said you can

25:30

walk into a room and you can see that pain mask

25:32

whether it's on or it's off . So , yeah

25:35

, let's go there .

25:36

So I mean I would say that

25:38

the first thing again that's important is treating

25:41

the patients where they are . So if

25:43

somebody's been living a pretty miserable

25:45

life and I start talking to them about

25:47

lifestyle , which is always where I stop , and they're

25:49

like , yeah , yeah , yeah , but I need something

25:51

to help me now , like I'm ready

25:53

to stick a knife in my head , we'll

25:56

jump there . But generally speaking , I would

25:58

say especially practice in kitsilano

26:00

and british columbia , vancouver , you

26:02

know , and a lot of my

26:05

patients are female and a

26:08

lot of them are wary of overprescription

26:10

and doctors are jumping to their pill pads . So

26:13

I will always start with

26:15

lifestyle modification . Supplementation

26:18

, very basically with vitamin and minerals

26:21

, have been proven to reduce

26:23

migraine and concussion symptoms in about

26:25

one in five or one out of six individuals

26:28

, which is a lot . Powdered

26:30

ginger just a teaspoon of ginger like

26:32

you'd use to put into baking in

26:35

a third of a cup of water , can be more effective than

26:37

Advil or Tylenol in about one in five or one

26:39

in six patients to get rid of acute

26:42

pounding headache when it onsets . Taking

26:45

out the list of triggers that I send

26:47

them , monitoring for things like stress

26:49

and sleep , trying to get into

26:51

better routines , trying to incorporate some form

26:53

of exercise Again

26:55

. Do I fix a lot of people with

26:57

it ? I don't , but I fix enough

26:59

that then they don't want to go on medication because

27:01

life's tolerable again or even pleasant , or

27:04

they tinker with it for a while and come back to me

27:06

and say , okay , I can't get any further with lifestyle

27:09

. Now what do we do ? But generally

27:11

I'll tell them everything I know how to and work with

27:13

them until I hit the wall where I don't

27:15

know anymore about how to modify lifestyle to

27:17

help them , at which point I like to

27:20

have a conversation about medication , and

27:23

medication

27:25

when it comes to migraine , falls

27:27

into two categories . They have what we call our

27:30

migraine abort efficiency , meaning something

27:32

you would take as the headache started to stop

27:34

the headache from getting worse or to make the headache

27:36

go away . That would be appropriate for

27:38

somebody like you who gets a headache every day or two

27:40

. But a lot of those medications

27:43

, like Tylenol , like Advil , they're hard

27:45

on our organs , they're hard on our kidney and you

27:47

don't want to be taking them every day if you have daily

27:49

headache or multiple times throughout the day , which some

27:51

of my patients do when they

27:53

have this type of headache . And there

27:55

are safer alternatives , much safer alternatives

27:58

, those fall into . There

28:00

are a few of our rescue or medications

28:04

or abort-efficient medications that are

28:06

prescription , and there are

28:09

a large number of them that are designed

28:11

to be what's called preventative , where

28:13

it's a pill you take every day or an injection

28:15

that you receive monthly or every three months that

28:18

is intended to cut the number of headaches

28:20

down by about 50% and to reduce

28:22

their intensity by about 50%

28:25

.

28:26

Yeah , medication , I know , even

28:28

for myself it can be scary

28:31

. But I like how

28:33

you said you start that lifestyle . Because , as

28:35

somebody who myself I live with Crohn's disease

28:37

, if I went

28:39

to my doctor and was complaining that I'm always in flare

28:41

but I just eat fried food for six meals

28:44

a day , well

28:47

I know my doctor will say

28:49

well , you know , we kind of , we kind of look

28:51

at your lifestyle first . Let's , let's , let's get that under

28:53

control and medication

28:55

doesn't have to be scary . And

28:58

I think and maybe

29:00

I don't know if you'd agree with me or not I think , as

29:02

a patient , it's to understand what

29:05

is that medication for , what are the risks . Like

29:07

, I have to , as a patient , be

29:09

able to weigh those pros and cons and be

29:11

able to say , make an informed decision

29:14

myself , because you take that medication

29:16

. You go to the internet , you search it , you Google

29:18

it , whatever you do , and it could

29:20

be scary , right , I'm on a medication

29:23

and I do my research and it's going like , oh

29:25

, I'm going to die , like 100% , that's what the medication

29:27

is . And then I actually get to the real

29:30

sites about the medication , or just some objective

29:32

opinions , and it's like , okay , it's not

29:34

that scary , but how do you

29:36

handle that with patients ?

29:39

I mean , I think the first thing is to

29:41

talk about the risks . And

29:43

it's interesting because if

29:46

you go on the internet and you type in any

29:48

drug , I

29:54

don't care what it is , I don't care , all of them cause blurred vision . That's

29:56

the nightmare of every ophthalmologist right . Anytime anybody's staring on something new

29:58

, they read on it somewhere that it's going to cause blurred vision

30:00

. They want to check in with me . Am I safe to start it or not

30:03

? And the actual fact

30:05

is , when people are listing side effects

30:07

, they'll often have to list anything that happened

30:09

during the study whether they thought the drug caused it

30:11

or not which is different than the true side

30:14

effects of the medication . So try and make a

30:16

point of that . I

30:18

also have to address a really common misconception

30:20

that the headaches are

30:22

masking the problem and

30:24

they're hiding what's really going on In

30:27

actual fact . In experimental settings

30:29

we don't have an ability to do it . If you come

30:32

into my office I can't give you a blood test for it , but

30:34

in experimental settings , when

30:37

we go into the brain of migraine people , they

30:39

have abnormally high amounts of a

30:41

neurotransmitter called calcitonin gene-related

30:44

peptide or CGRP , and that's a neurotransmitter

30:46

that calcitonin gene-related peptide or cgrp and that's a neurotransmitter that

30:48

makes your head hurt , or if it goes

30:50

to your nasal tissue

30:53

in your brain neural factory center , it might make you smell

30:55

something that's not there . If it goes to your

30:57

visual cortex , it might show you pictures

30:59

that aren't there in one eye or both eyes . And

31:02

and it's all this neurotransmitter . So

31:05

the drugs that we know work . Some

31:07

of them lower the level of that neurotransmitter , so

31:09

they're actually working the same way as our

31:12

dopamine agonists do for people with

31:14

Parkinson's who don't have enough dopamine , for

31:16

serotonin boosts

31:18

, for myoselective serotonin reuptake inhibitors

31:21

, for people with depression , and

31:23

so the drugs aren't hiding

31:25

things , they're actually trying to heal things . So that

31:27

is a big open door for a lot of people

31:29

. Some of the older medications

31:31

that we use that are ordinarily

31:34

wander around in life as seizure medications

31:36

or hypertensive medications for people

31:38

with high blood pressure . I think we have less

31:40

idea how they work . But migraines

31:43

often viewed as a neurovascular headache

31:45

. So controlling how fast the

31:47

blood pressure can spike and how fast the heart rate

31:49

can spike is likely

31:52

naturally modulating the migraine

31:54

response for some people . So I

31:56

try and educate . It does

31:58

take a long time . That's

32:06

why I want to start with . Lifestyle is if we don't have to have a half an hour conversation

32:08

about what medications that you may go on six or 12 weeks

32:10

from now . When you're going to want me to repeat it all again

32:13

, let's do it then , and

32:16

sometimes we don't need to .

32:18

Yeah Well , I love that you start there

32:20

, that lifestyle approach , and you know

32:22

somebody who's listening to this . Maybe you're

32:25

just looking to educate yourself on this topic or

32:27

you are struggling to advocate for

32:29

yourself . I think there's

32:31

some good takeaways here , where

32:33

you know , write stuff down . But also , if

32:36

your doctor maybe is just jumping straight

32:38

, here's a prescription , see you later , you

32:41

know what are the side

32:43

effects of this . What is this going to do ? Is there somewhere

32:46

else we can start ? Maybe

32:49

lifestyle like what should I be looking at ? Should I see a specialist ? How

32:51

can I see a specialist ? Just

32:57

even some of those quick questions I know , even for myself , have been incredibly helpful and

32:59

have gotten me to the care team that I have now , which is a phenomenal

33:02

care team . Didn't always have a phenomenal care

33:04

team and it took a lot of time

33:06

, which , when you're suffering

33:10

or struggling , it doesn't feel like you have time

33:12

on your side and so it

33:15

takes time to

33:18

get diagnosis , to get the treatment , and

33:20

so just don't give up .

33:22

Well , and then the other barrier that I

33:25

haven't talked about is the cost of some of these medications

33:27

, and it's a real barrier . Some

33:31

of them are not covered by drug

33:33

plans . Some of them are not covered

33:35

by provincial drug plans here in Canada

33:37

, Some of them . In

33:39

order to access them , you have to

33:41

try older classes of medication that

33:43

are less likely to work and have more

33:45

side effects first , older classes

33:47

of medication that are less likely to work and

33:49

have more side effects first . So

33:52

again back to the trust issue . You know I've got classic case would be somebody with

33:54

concussion and maybe they can't try some of the other medications and

33:57

I have to prescribe them something

33:59

called topiramate , which I know it's

34:02

nicknamed dopiramate because it clouds

34:04

thinking , it makes people , some people feel cognitively

34:07

foggy . Of course it doesn't have that in everybody . So

34:09

I've got to say to somebody who's walking around in

34:11

a brain fog all right , the only way I can

34:14

get you the drug that I'd really like to

34:16

try for you that I think would help you is to give

34:18

you this other one for 30 to 60 days

34:20

first . That might make your

34:22

concussion symptoms worse . You game for that . And

34:31

so that trust of making sure they see what the long-term strategy

34:33

is , and that there is a long-term strategy is an important part . And

34:36

when the drug does get turned down , I need to

34:38

make sure that they come back and tell me about it . And

34:41

I had two Olympic athletes and

34:44

they're under the same drug plan

34:46

and one of them gets approved for the drug

34:48

and the other one doesn't for the same diagnosis

34:50

. And I call

34:53

the drug company and say what the heck ? And they say well , you

34:55

didn't try this . I said yeah , because you can't

34:57

use it more than nine days a month and she'd be using

34:59

it 60 times a month and kill herself . It's

35:01

not on my table , oh

35:03

, okay , Well , then we'll approve it . Thanks , no problem

35:05

, Right . And oftentimes it is just

35:07

a clarification like that . But

35:10

the patients sometimes think no means no , and

35:12

if I've prescribed them something

35:15

I think is going to be approved , and I've planned to see

35:17

them again in three months , and they come back and say how

35:19

are your headaches ? Oh , terrible . Oh , that drug didn't work

35:21

, oh , it didn't get approved . And I go oh

35:24

, how come I don't know ? All right , well

35:26

, let's do our homework , let's get to the bottom of this and oftentimes

35:29

we are able to either reverse

35:31

it or put them through the steps

35:33

. We need to get it approved the second time that

35:35

we ask for it .

35:37

The thought swirling around in my brain is I

35:40

know we were talking about concussions and

35:42

migraines and I think there's just so

35:44

much insight in this

35:47

episode for people who

35:49

are just trying to advocate for themselves . Right

35:52

, I've had medications not approved by drug

35:54

plans and then I think how am I going to pay for this

35:56

? You know , this is thousands and

35:58

thousands of dollars . And , yeah , we're

36:00

here in Canada and we have a different

36:03

healthcare system than other places in

36:05

the world . But still , just

36:07

because we have a federal health

36:10

plan , it doesn't mean everything is covered Medication

36:13

I'm on now . I am

36:15

grandfathered into this

36:18

program because I was one of the early

36:20

people in this plan . I

36:22

could not afford this . I'm a solopreneur

36:25

. I don't have health . I don't have my own private

36:27

healthcare . This would have cost me over $10,000

36:29

to $20,000 . I can't get an exact

36:31

price every eight weeks . How

36:33

can I afford that ? And so when

36:35

it's not approved , again it's

36:37

what do we do ? We need to take that back to

36:39

our doctors . We need to say , hey , what

36:42

can you help me with ? Is there something

36:44

else that I can get approved ? Or

36:46

hey , I heard that this is going

36:48

to work , but now what there's

36:51

options and what I've heard from

36:53

people who are trying to advocate for themselves is we

36:55

hear no and you hear that no a few times

36:57

and it's just , it's hard . And

37:00

a friend of mine who was

37:02

struggling with living

37:04

with migraines for many , many years

37:06

had heard no so many times and

37:09

they just were like I'm not giving up and

37:12

got the treatment . I'm going to record with her

37:14

and release that in a few months

37:16

. It's going to be a fascinating conversation because their

37:18

journey of self-advocacy to

37:20

get that diagnosis , to get that procedure

37:23

, to get the medication , it's

37:26

changed their life . And so

37:28

have you encountered what

37:31

would you say to someone who's really now

37:33

at that point where I don't know what

37:35

to do ? Maybe work doesn't believe them , maybe

37:37

they're struggling to get that

37:40

treatment . What advice or what

37:43

would you offer that person who

37:45

is struggling in the context of , maybe , the

37:48

work that you do in migraines

37:50

and concussions ?

37:51

I mean , I think one of the

37:53

things that is helpful

37:56

is , of course , making sure the patient

37:58

knows you believe them . One of the things I'll say often

38:00

is I'm going to start giving out green

38:02

wristbands , like those yellow Livestrong ones

38:04

, so people can see that you're really sick

38:06

and I've endorsed the fact that there is a serious

38:08

illness there . And

38:11

then , if there's a treatment reluctance

38:13

, specifically I try and tackle it head-on , and

38:16

oftentimes I think it's it's

38:18

them thinking about what

38:20

the medication might do for them and their

38:23

body , which is incredibly valid

38:25

. But also , to step

38:27

the picture back and go , are there other

38:29

aspects that we aren't considering here , like when

38:32

you're missing your son's hockey

38:34

games cause the arena is too noisy , or you're missing

38:36

your daughter's . You know hockey games

38:38

because you know there's too much motion

38:40

or artifact on the ice and it's making you feel

38:43

sick . Like what

38:45

would your daughter want here and your son

38:47

want ? They want mom back , and if I think

38:49

I can give mom back , isn't that worth

38:51

taking the shot for ? And so sometimes

38:53

it's just broadening the

38:56

perspective . Sometimes

38:58

it's addressing the fear . Botox

39:01

is an on-label treatment for migraine in Canada

39:03

since 2011 , and I treat

39:05

a number of patients with it and

39:10

when I was first treating . It was somebody whose headaches went from

39:12

debilitating 15 days a month to

39:14

zero , and that's not a common response . I'm

39:16

not trying to say that that's what people should expect , but

39:18

for that individual , the impact

39:21

on her quality of life was a

39:23

miracle , in her words , not mine . She

39:26

went back to her family doctor who said , oh , my goodness

39:29

, they're putting Botox that's

39:31

going to take 10 years off your life . You got

39:33

to get her to stop that and she said

39:35

to him I'll take it . If

39:38

I was told absolutely , it would kill

39:40

me 10 years earlier , but I can live the next

39:43

however many years without headaches deal

39:45

, but I can live the next however many years without headaches deal . And so I think that

39:47

that's that's an interesting one . And

39:51

in terms of advocacy , when you talk about patient

39:53

support programs , I was giving a talk

39:55

for a group of concussion specialists

39:58

and they were really taken aback by the prices

40:00

of some of the medications and I

40:02

was saying , well , there's a support system right now . There's

40:04

this , there's that , and I said , well , why

40:09

would I start them on it when I know they're not going to be able

40:11

to afford it if the program goes away ? I said , well , I don't make money

40:14

decisions for my patients . I'm sensitive to the fact

40:16

that not everybody has money . I'm sensitive to the fact

40:18

that , even if you have money , $10,000 or $20,000

40:20

every eight weeks is probably really

40:23

a small percentage . But you

40:25

don't know . You don't know if their parents

40:28

have money . You don't know if their siblings have money . You

40:30

don't know if they get on the drug

40:32

for six months , if they'll go to work and get a job

40:35

somewhere specifically that's got good benefits

40:37

that were covered in the absence of it being covered

40:39

by the government . So I

40:41

never , ever , make a decision that somebody can

40:43

or can't afford something , or is or isn't for

40:46

them . I want to make sure that that is their decision

40:48

when they're this sick .

40:50

Yeah , it's presenting all the options and , you

40:52

know , just even just taking a step back

40:54

into concussions and migraines and

40:56

specifically

40:59

, you know , in society , right , we

41:01

talked about the invisible nature of it . It's

41:04

you look at someone and go , oh

41:06

, but they look fine . No , it's just a headache

41:08

, it takes some Tylenol , it takes some Advil

41:10

. That's really hard to

41:12

hear and

41:21

I know I'm guilty of it . It's like , oh , just sleep it off . And I've been on the receiving

41:23

end of that . And so , for someone who is specifically

41:26

living with migraines , living with

41:28

concussion

41:31

, what would you say to someone , just to help

41:33

them articulate what

41:35

they need for support or what they're even going through ?

41:46

that they should share with their family , that the quality of life of somebody with their condition

41:48

is the same as somebody who's had a moderate to severe stroke or has dialysis

41:50

for kidney failure every day . That can

41:52

be a really helpful thing because people understand

41:55

kidney failure is really bad and they understand

41:57

that a moderate to severe stroke is really bad

41:59

. So if their doctor is telling

42:01

them they have the same quality of life as

42:03

those people do , that is something

42:05

their family and friends often can relate to in

42:07

a way that they couldn't relate to it when they were trying

42:10

to think about how they feel when they

42:12

have a bad headache once every couple of weeks or months

42:14

.

42:15

Yeah , I like that bring

42:31

a very tangible comparison to this diagnosis that affects so many people

42:33

here in Canada and around the globe . And I think , as we wrap up , I ask this question

42:35

to everyone and this is a

42:38

big hard . I

42:40

think it's big and hard , but yet I am so

42:42

. Anyway , let me get into it . The

42:45

purpose of invisible condition is to end

42:47

the stigma of invisible conditions

42:49

, and I know I

42:51

say this is hard because it's so complex

42:54

. How can we

42:56

do this ? How are we going to do this ? How can we take steps

42:58

in society , in our workplaces , our

43:00

families , to end the stigma that

43:03

often is attached to our

43:05

invisible conditions ?

43:07

I mean , I think , as I say , a big , big piece

43:09

of the puzzle is education . Educate

43:12

our GPs , educate our emergency room doctors

43:14

. Make sure that concussion is not

43:16

being under or over-diagnosed . Make

43:18

sure that chronic migraine is

43:20

being diagnosed . Make

43:23

sure that when it's diagnosed , it gets treated properly

43:25

.

43:28

Yeah , that education piece is

43:30

so

43:32

important and I like how you said , we need to educate

43:34

our doctors , our

43:42

emergency room physicians . We also need to educate those around us . Like you said , if I was

43:44

diagnosed with chronic migraines or concussion , how

43:46

to even educate those around us ? And

43:48

that's something that I'm looking to

43:50

do here . Even at a visible condition , what does

43:52

that look like ? And there's so many great resources

43:55

. I know you've got a blog as well . We'll put

43:57

that in the show notes and

43:59

yeah , again , as

44:01

we wrap up , I just

44:03

really appreciate you coming on and sharing with us

44:05

just the definitions of

44:08

migraines and concussions and

44:10

we took a turn into that whole advocacy

44:13

piece , which is something I'm passionate

44:15

about , and just

44:18

even that story of two Olympians diagnosed the

44:20

same thing , same medications . One

44:22

was approved , one wasn't , and if that's

44:25

where the conversation ended , that'd be heartbreaking

44:27

and it didn't end there and

44:29

they got the approval . And

44:32

I don't know who they are , but I'm sure they're doing

44:34

amazing things and so you know . Any

44:36

final thoughts as we wrap up , Dr

44:38

Sexton .

44:40

I'd just say to anybody who's living with it you know

44:42

, first of all , I'm sorry . It's a really

44:45

, really tough diagnosis , whether

44:47

it's concussion , brain

44:54

injury or migraine headache

44:56

. If your head hurts all the time , you're miserable . Migraine

45:00

again is a really good website , very trusted in terms of their resources and recommendations

45:02

. Lots and lots of lifestyle stuff there for people who don't want to start

45:05

with medication .

45:06

And we'll have a link to all of that in the show

45:08

notes . Every time I put together

45:11

a podcast page . I have definitions

45:13

, I have resources , I have a lot

45:15

of information on there , because

45:17

it's not just about recording an episode and

45:19

pushing it out . It's about educating ourselves

45:21

and our loved ones . I've

45:24

learned a lot about migraines and concussions in this

45:26

conversation and our loved ones . I've learned a lot about migraines and concussions in

45:28

this conversation and I hope , if you're listening , that you also

45:30

have learned something . If you have questions

45:33

for Dr Sexton , we're going to do something

45:35

a little bit differently . Send them to me on

45:37

the website , on

45:45

the show page . I'll just have a link , a contact us link , on there . Send me your question . I'll forward those on to Dr Sexton , because I

45:47

know even for myself I'm listening to this and I'm like , oh

45:49

, we could probably record for another hour because

45:51

I've got so many questions , but this

45:54

leaves us at a good place . And so if

45:57

you are listening and you

45:59

love what Invisible Condition is all about

46:01

, please tell your friends , your family , subscribe

46:04

to the newsletter . It comes out

46:06

every couple weeks . Subscribe

46:08

to the podcast , share it out . That's how we are going

46:10

to end the stigma , one way we're going to help end the

46:12

stigma . And so , dr Sexton

46:14

, thank you for spending time with us today . I really

46:16

appreciate you coming on and , again for those who

46:18

are listening , I hope you have a good one .