What Could be Improved for Migraine Care in Canada

0:00 [Music]
0:27 hello everyone this is elizabeth larue
0:29 here chair of migraine canada
0:31 and today i’m very excited to have a
0:33 special guest
0:35 shelley duvall has won the first prize
0:38 for the
0:38 annual migraine moment short movie
0:40 contest
0:41 of the american migrant foundation
0:44 and so i’m very glad to have her here to
0:47 discuss about
0:48 her movie and also her vision of
0:51 migraine care in canada welcome shelley
0:55 thank you for having me
0:58 and so um uh i uh i just wanted to just
1:01 maybe start by
1:02 saying a few words about yourself
1:05 sure great um so i i’m shelley i live in
1:08 montreal quebec canada
1:10 and um i i’m a pharmacist
1:14 and i have had chronic migraine for the
1:17 past
1:17 three years my first migraine happened
1:21 probably when i was a kid but it was not
1:23 diagnosed but
1:24 thinking back i i do remember having one
1:27 very very young
1:28 um and so the past three years
1:30 especially have been
1:31 a big challenge for me uh dealing with
1:34 chronic migraines so
1:36 uh it led to me um i guess getting a
1:39 little bit more
1:40 involved in terms of advocacy and uh
1:43 recently um this winter there was an
1:46 advertisement to
1:47 participate in this film contest and i
1:49 thought it would be a really interesting
1:51 way
1:52 to do something so that’s why i’m here
1:54 today
1:56 excellent so i watched a movie i really
1:59 enjoyed it
2:00 and i invite the viewers to go on our
2:02 website or you can they can look for it
2:04 actually pretty easily on google by
2:05 looking for the annual
2:07 migraine moment movie contest on youtube
2:09 also and we
2:10 also linked to it on migraine canada so
2:13 what what were you really uh hoping to
2:16 focus on or what did you want the
2:17 viewers to take from this movie when you
2:19 designed it
2:21 well i really wanted to um to
2:24 create a medium that would help me to
2:26 really talk about my brain with my own
2:28 entourage
2:29 so i mean for sure i wanted to
2:30 participate in the contest but it was
2:32 also really to help me personally
2:34 because i found that i had opened up
2:37 about my struggles i mean
2:39 with my husband my parents and a couple
2:42 of my very close friends but
2:43 i really in general i it was something i
2:46 didn’t want to talk about
2:47 and i feel like there’s kind of a lot of
2:50 stigma that surrounds
2:51 migraine people just don’t really
2:53 understand it and
2:55 they think that it’s just a headache so
2:57 when you suffer to the extent that i do
2:59 and that a lot of people do
3:01 there’s just not a whole lot of
3:03 understanding about that so
3:05 i i thought that making this movie would
3:07 be kind of a way to show my story
3:09 without um actually having to talk about
3:12 it
3:13 so it was kind of like a way to maybe
3:16 start conversation
3:18 in a way that would ease me into it um
3:21 so
3:23 basically i thought that the medium of
3:25 animation would be really interesting to
3:27 use
3:28 as well because it would allow me to
3:31 relay my experience in a bit of a
3:33 lighter manner
3:35 um and convey i guess
3:38 through the animation things that can’t
3:40 really be said in words to allow people
3:42 to really visualize
3:44 what it’s like to live with migraine um
3:47 so
3:47 in my movie there’s a little monster
3:49 called the migraine monster who
3:51 he’s tethered to me throughout my life
3:54 and um
3:55 he’s really like shackled to my leg
3:57 holding me back he’s like a dead weight
3:59 and that really represents what it’s
4:01 like for me to
4:03 to live with chronic migraine is even on
4:05 the days where i feel well there’s
4:07 always this sort of
4:08 looming little monster that is
4:10 threatening to
4:11 to come to life and to attack um
4:15 so um i did think that it was it was
4:18 fun a little bit to represent him that
4:20 way he is a little bit cute despite
4:22 himself
4:23 which um brings a bit of lightness to
4:26 the conversation because i find a lot of
4:28 people when they’re
4:29 talking about their experience they
4:31 focus entirely on the negative aspects
4:33 of migraine and obviously there
4:35 is mostly negative with migraine but
4:38 um when you’re talking about someone
4:40 with chronic migraine i was having
4:42 25 days of migraine per month so that
4:45 was
4:45 my whole life and there were a lot of
4:49 other things in my life at that time
4:50 too despite the migraines so i wanted to
4:53 represent a little bit of that duality
4:55 and show in the movie that
4:57 there were other things in my life i had
4:59 my friends my family my co-workers who
5:01 were
5:01 very supportive i was really lucky to
5:03 have that and
5:05 i was still able to do my pastimes
5:08 um like being on the big spear
5:12 but i had to just adapt it to my new
5:15 life
5:15 so um yeah it’s really i thought
5:18 animation would be a cool way to show
5:20 that
5:21 and i’m lucky that i have a really close
5:23 friend of mine who i collaborated with
5:24 who’s an
5:25 excellent artist so together we were
5:27 able to make it happen
5:29 yeah i was very impressed that you could
5:30 get the the animation done because
5:33 it’s it’s not that easy to find people
5:35 to do that and i
5:36 i really received it the way you’re you
5:38 designed it that
5:40 it’s there everywhere but sometimes
5:43 you know you just have to you have to
5:45 live your life
5:46 and i i really like the way that you
5:50 describe your journey also trying the
5:52 medication there’s a sequence i
5:55 particularly liked uh where you have the
5:57 wheel of fortune can you
5:59 tell us a bit more about this section
6:00 yeah so
6:02 the spinning wheel um this kind of came
6:04 to me is that
6:06 as really what it’s like when you’re in
6:08 a doctor’s office or even just making
6:10 decisions for yourself about what
6:12 you should do next because um as a
6:15 migraine patient
6:18 especially chronic migraine it’s really
6:19 hard to treat a lot of the treatments
6:21 just
6:22 don’t work and um sometimes it’ll work
6:25 for one person but it’s not going to
6:27 work for the other
6:28 so it really it’s a big process of trial
6:31 and error
6:32 and what i find is you need to kind of
6:35 always be balancing uh like
6:39 the benefits and the disadvantages of
6:41 each treatment so
6:43 um there’s for sure the side effects uh
6:45 that
6:46 um for me i’ve gone through like really
6:48 horrendous ordeals with side effects
6:50 with different medications
6:52 um to the point where at night right now
6:54 i’m not actually taking any medications
6:57 but we’ll see for the future um
7:00 and then there’s also the risk of uh
7:02 with certain
7:03 of the more acute uh treatments that you
7:06 could develop medication overuse
7:07 headache or secondary headaches so
7:10 um often when you’re living with chronic
7:13 migraine and it’s not well controlled
7:14 you do
7:15 fall into that sort of pattern where
7:17 it’s like
7:18 okay do i treat this migraine do i not
7:22 do i suffer through it do i treat it and
7:24 then risk having like to
7:26 pay for it later so it is really like a
7:29 a wheel that you’re constantly spinning
7:31 and seeing where it’s going to fall and
7:34 that day what choice you’re going to
7:35 make
7:36 um so i mean that’s that’s kind of how
7:38 it’s like
7:39 day to day and then certainly it’s
7:43 sort of extended into when you’re
7:45 speaking with your doctor or your
7:46 specialist
7:47 um they want to help you and they’re
7:49 offering you all these different
7:51 treatments but
7:52 still at the end of the day they can’t
7:54 guarantee it’s going to work and there’s
7:55 no panacea
7:56 so uh it’s uh it’s an
8:00 it kind of made me feel a lot like a
8:02 hamster where i was just being like
8:04 things were being
8:05 i was being experimented on so yeah had
8:08 a nice feeling
8:09 yeah for me being on the doctor’s side
8:11 after years and years of seeing
8:13 you know many patients i i fully get it
8:16 because you
8:16 you start you know you you want to help
8:19 so much and then your patients come back
8:21 to you
8:21 and no they had side effects or it
8:23 didn’t work and it’s not their fault
8:25 it’s just the drugs are
8:26 not necessarily working for everyone uh
8:29 and we we also advise our patients to
8:31 avoid medication overuse but
8:33 what do you do as you as you say i mean
8:35 do you not treat and then you end up in
8:37 your bed for three days so
8:39 for migraine patients there’s a lot of
8:41 being caught between a rock and a hard
8:43 place and having to find a graceful way
8:45 to
8:46 to try to cope with all that but um i
8:49 think um
8:50 now we can switch to another topic which
8:53 is the
8:54 the migraine care in canada um
8:57 so this this contest was based uh on the
9:00 american foundation
9:02 but here in canada um the state of
9:04 access to care is not
9:06 perfect so for viewers i asked shelly i
9:09 mean what
9:10 you’re a pharmacist you have migraines
9:12 and i’m a neurologist and i also have
9:14 migraines so we wanted to discuss a
9:16 little bit
9:17 about items or things that are uh
9:20 important for migraine care
9:22 and so shall you came you came up with
9:24 those four topics that
9:25 fully fully align with what i also have
9:28 concerns about
9:29 so um you listed improving the
9:31 importance of the
9:33 primary care the importance of having
9:36 access to
9:37 a headache specialist or a headache
9:39 clinic
9:40 and then how difficult it can be to go
9:44 to the emergency department
9:45 and spend some time there not getting
9:49 necessarily
9:50 the treatment you need and then finally
9:53 how people with migraine don’t
9:55 necessarily have access to the
9:56 treatments they need
9:58 and how sometimes they are disabled but
10:01 for some reason
10:02 this disability is not recognized so
10:05 let’s start with the first one that is
10:07 the access to the uh
10:09 the the primary care how how you’re
10:11 managed when you deal with family
10:13 doctors
10:13 and and please family doctors out there
10:16 don’t
10:17 many family doctors are doing their very
10:18 best but what are the challenges there
10:21 and how do you think we can make things
10:22 better
10:24 there’s a lot of challenges i mean at
10:26 least in quebec
10:27 access to a primary care physician is a
10:29 little difficult sometimes the wait list
10:31 can be
10:32 very very long so there’s a lot of
10:34 people who don’t even have a family
10:36 physician so they’re left
10:37 going to walk in clinics or to the
10:39 emergency room when they need
10:40 care but i mean starting with the topic
10:44 of actually having a family doctor who
10:46 can care for you
10:47 i’m very fortunate that my family doctor
10:50 has been fantastic
10:51 and really kind of held my hand
10:53 throughout all of this which is great
10:55 and referred me to
10:56 the good resources that i needed but a
10:59 lot of people don’t
11:00 have that and as a pharmacist it
11:03 has become more and more obvious to me
11:05 throughout the years because
11:07 i can get a patient sometimes who comes
11:09 in with a prescription for a trip 10
11:11 medication which is
11:12 one of the acute treatments and
11:16 i’ll go to counsel them and it’ll come
11:18 out during our conversation that they’re
11:20 actually suffering from chronic migraine
11:22 you know they have migraines
11:24 20 days a month and it’s been happening
11:27 for years
11:28 and this is the first time that they’ve
11:30 consulted for whatever reason maybe part
11:32 of the stigma or they just didn’t think
11:34 that anyone could help them
11:36 and they came out of the doctor’s office
11:38 after like a two-minute consultation
11:41 with
11:41 a medication just to treat their attacks
11:44 which like to me is a bit insane that
11:47 like you can
11:49 not be offered a prophylactic treatment
11:52 when you’re
11:52 having chronic migraine but also that
11:55 other methods were not discussed like in
11:57 terms of
11:58 other things you can do diet regulating
12:01 your sleep cycle
12:02 modifying your exercise doing like any
12:06 kind of psychological based
12:08 treatments i mean there’s a whole host
12:10 of different
12:11 things that that migraine patients can
12:13 try to help and usually it’s a
12:14 combination of these factors that’s
12:16 going to work
12:17 so i mean it’s sad to me that that
12:20 person
12:21 uh tried to reach out for care and just
12:23 kind of i didn’t even know that any of
12:25 this was out there
12:26 so as a pharmacist i definitely take it
12:28 upon myself to try and educate them with
12:31 those things and also if i see that
12:32 there’s room for a prophylaxis i will
12:35 get in touch with their doctor and
12:36 suggest something so i mean
12:39 there’s a lot of things that pharmacists
12:40 can do as well but in terms of the
12:42 primary care physicians who
12:44 are not i guess stepping up and and
12:46 doing
12:47 um i guess the
12:50 job that needs to be done for these
12:52 patients i think there’s a lot of room
12:54 for improvement um and i know uh
12:57 with you previously when we had talked a
13:00 little bit we talked about the need for
13:01 sort of that interdisciplinary approach
13:04 to migraine care so um
13:06 maybe having doctors and pharmacists and
13:08 maybe even nurse practitioners
13:09 collaborating and
13:11 um seeing if uh
13:14 if we can even sort of create maybe a
13:18 position like a migraine educator uh
13:20 someone who would be specialized in that
13:22 and who could
13:23 uh doctors could refer the patient to
13:26 them if they don’t have the time or the
13:28 resources to provide the adequate
13:30 follow-up
13:30 um so i think that’s a great idea and
13:32 even maybe uh
13:34 having a special like continuing
13:36 education
13:37 continuing medical education credit
13:39 course for primary care physicians that
13:41 they could do if they’re interested in
13:43 getting more involved in migraine and
13:45 learning what they can do
13:47 on the first line to help people so i
13:49 think all in all like
13:51 um there’s some room for improvement
13:53 there
13:54 i think we agree and over the years um
13:58 it’s it’s funny to me because i i’m so
14:00 passionate about my migraine care that
14:03 i dedicate a lot of time to it but we
14:05 have to realize that family dogs
14:07 sometimes
14:07 so first they’re not trained a lot they
14:10 don’t receive a lot of information so
14:11 that’s the first thing
14:13 and then as you say even if they know
14:15 what to do sometimes they don’t have the
14:16 time to provide
14:17 all this counseling that is very
14:19 important i cannot imagine
14:21 a person having five minutes
14:23 conversation uh
14:25 and so to to cover for that lack of time
14:27 maybe having allies
14:29 uh the pharmacists the nurses could be a
14:32 good idea so i think
14:33 there are many of those projects that we
14:35 can work on but um
14:37 it’s it’s for diabetes and asthma it’s
14:40 done already
14:41 so let’s let’s get it done for migraine
14:43 that’s another chronic
14:44 even in the occasional form it’s it goes
14:47 over the lifetime
14:48 so my wish would be for any person with
14:51 migraine
14:51 um to to just receive basic information
14:54 to start with and then and then be aware
14:56 of options
14:58 and all the options not only the
15:00 medications
15:01 but let’s say that you started your
15:03 journey and you have occasional
15:04 migraines and things are controlled
15:06 that’s great but
15:07 what if you need a headache specialist i
15:09 mean but
15:10 what has been your experience with
15:12 finding a headache specialist or
15:14 a headache clinic um well it was it was
15:17 definitely a long road
15:18 i had been referred to general
15:20 neurologists before
15:22 and they were able
15:26 to start some treatments for me but
15:29 nothing was really working too much and
15:31 i decided like i really wanted to see a
15:33 headache specialist when i found out
15:35 there was such a thing
15:37 and um so i i applied
15:40 or i asked my family doctor to help me
15:43 uh like
15:44 get the paperwork rolling and everything
15:45 to get into the
15:47 migraine clinic at the shin which is
15:51 one of the only specialized clinics that
15:53 we have here in quebec
15:54 so um i had to wait quite a long time to
15:58 get in there and we’re talking about
15:59 months if not years of waiting lists to
16:01 get in
16:02 and during this time you have to
16:04 remember that we’re having 20 to 25
16:07 migraines
16:08 per month here we’re vomiting every day
16:10 and like it’s
16:11 life is not good we can’t work so
16:14 it’s um that’s a really long time to
16:17 wait when you’re
16:18 suffering so much and you i think like
16:21 a lot of migraine patients myself
16:23 included put
16:24 so much hope into finally getting into a
16:28 clinic like this and getting someone who
16:30 truly understands migraine
16:31 like yourself who’s ultra specialized in
16:34 this and really interested
16:35 because um a lot i find like
16:38 one of the big problems is that there’s
16:40 just a lack of interest maybe
16:42 even within medicine and in migraines so
16:45 um it’s it’s very exciting for us to
16:48 have access to to
16:50 neurologists and a whole team really who
16:52 who love to do this and who are
16:54 interested in helping us
16:56 um so yeah wait you have to wait two
16:58 years for it right i remember
17:00 i worked i used to work at at this
17:02 clinic our pile of consultations
17:05 was humongous um we we were desperate to
17:08 see like we had a year waiting
17:11 uh at least and that’s not uncommon
17:13 across canada there are not many
17:15 academic centers providing help
17:17 for people with migraine um and one of
17:20 the
17:20 issues is that and i’ll say it you know
17:23 because i’m a neurologist
17:24 is that in neurology headache medicine
17:27 is
17:27 is the poor child of neurology it’s not
17:29 something that has evoked a lot of
17:31 interest or funding or research and so
17:35 the career opportunities in many
17:36 academic departments are very limited
17:39 there are a few centers that are
17:42 have been very innovative and they have
17:44 taken the leadership
17:46 on headache but for many neurology
17:48 residents and you’ll have just a few
17:50 hours of talks and a few hours of clinic
17:52 and that’s it
17:53 but when you arrive in the real world
17:56 headache
17:57 is 25 of your consults so
18:00 it’s and there are so many people with
18:02 chronic migraine who need
18:03 expert care so there’s really something
18:06 to be done there
18:07 um to correct this waiting list but also
18:11 uh it’s it’s it’s it doesn’t mean
18:14 because you go to a clinic you will find
18:16 immediate relief right as as you’ve
18:18 probably seen so
18:20 a lot needed there and then another
18:22 unfortunate situation sometimes happens
18:24 is when you have this super bad attack
18:27 and then you just
18:28 have to go to the emergency department
18:31 so has
18:32 i don’t know if that happened to you and
18:33 how it went and what you could envision
18:36 about this situation to make it better
18:40 the first time i had to go to the
18:41 emergency was about a year and a half
18:43 ago when i
18:44 was at my worst with the chronic
18:46 migraines and um
18:47 i had this migraine that just wouldn’t
18:50 stop it was intractable i’d had it for
18:52 about three or four days and um
18:54 i really in my particular case the most
18:58 disturbing part is the vomiting so i was
19:01 just so dehydrated that i
19:03 i couldn’t like i was starting to be not
19:06 really responsive
19:07 so um it was it was scary so
19:11 we um we went to the emergency
19:13 department and
19:14 um i thought like you know given the
19:17 amount of pain i’m in and the fact that
19:19 i
19:19 i’m not really like all there at this
19:22 point i figured i’d be seen pretty
19:24 quickly but that’s not the case
19:26 um i was triaged by a nurse and
19:29 who kind of confirmed i was not dying
19:31 and then i was put into the
19:33 you know the back of the waiting list so
19:36 um i think i waited about four hours in
19:38 a bright emergency room
19:40 uh full of people noises and um
19:43 having to run to the bathroom every few
19:45 minutes to throw up
19:47 and it was really traumatic honestly it
19:50 made my headaches so much worse
19:52 and finally when i i got into a room
19:56 i was able to lie down and at least it
19:58 was dark so that was a big plus and
20:01 um at that point like i i
20:04 i sort of had an idea obviously what
20:06 type of medications i was getting
20:07 because i do work in pharmacy but i had
20:09 never had them myself so i was a little
20:11 bit worried about getting them so
20:14 there’s a lot of anxiety for a lot of
20:16 different reasons going to the er
20:17 a lot of unfamiliarity and a lot of
20:20 things in the environment that make it a
20:22 lot worse for a migraine patient
20:25 and then there’s the interaction with
20:26 the er doctor and again
20:28 uh not to put any blame on them
20:30 personally because i know that they have
20:33 like a really huge workload
20:34 tons of patience it’s the middle of the
20:36 night i mean
20:38 there’s only so much that they can
20:39 really do when you show up at the
20:41 emergency
20:41 but that being said
20:45 being allowed a maybe one or two minute
20:47 consultation with the doctor
20:49 before the nurse comes puts the iv in
20:52 and everyone leaves for four hours
20:54 that’s also very traumatic and um
20:57 i would say that i didn’t really get
20:59 that much relief but at least i was
21:01 getting
21:01 the the iv fluid so i was able to
21:05 you know function and get rehydrated but
21:09 that migraine did take at least another
21:11 12 to 24 hours before
21:13 it uh before it broke so um
21:16 i really think that i that that was a
21:19 very
21:19 traumatic experience for me like really
21:22 traumatic and i never wanted to go back
21:24 to the hospital again
21:25 i ended up having to go twice more
21:29 to the er and both times we’re equally
21:31 bad
21:32 so i i think there is um there’s a lot
21:35 to be said about
21:37 like improving that kind of situation i
21:39 know when we were speaking earlier
21:41 we had talked about a few different
21:42 measures i don’t know if you wanted to
21:43 bring them out first
21:45 yeah i mean i i worked this is appalling
21:48 right when you think about the worst
21:51 place on earth
21:52 apart from a rock concert is probably an
21:54 emergency department when you have a
21:55 migraine
21:56 and the only thing you want is peace and
21:58 quiet but you just can’t stay home
22:00 because you’re dehydrated
22:01 and it’s going on uh i did my headache
22:04 fellowship in france in paris where they
22:06 have a dedicated
22:08 place in the emerge for a migraine in
22:10 the special center
22:11 where it’s you know the lighting is low
22:13 the nurses are trained we have infusions
22:15 ready
22:16 and we were we used to see 60 patients
22:19 per day
22:20 with different types of headaches um and
22:22 that was very much appreciated but this
22:25 is a very unique center i’m not aware of
22:27 any else
22:28 in the world um so your experience that
22:30 you just shared
22:32 has been shared by patients in my office
22:35 on forums
22:36 this is a key need and we should really
22:39 work on that and
22:40 of course the emerge is is a place where
22:42 you know people die and there’s all
22:44 kinds of catastrophes so
22:46 um but i think considering the fact that
22:48 there’s always at least one or two
22:50 people with migraine
22:51 in the emerge it wouldn’t be too much to
22:53 ask to have
22:54 a dedicated place and also just a little
22:57 bit of respect because
22:58 you you went through a lot but some
23:00 patients go there they’re treated as
23:02 drug seekers you know um and and i’ve
23:05 heard comments
23:06 but we’re very rude to patients you know
23:08 what are you doing here you’re losing my
23:10 time you should be at home it’s only a
23:12 headache
23:13 so there’s there’s probably some
23:15 collaboration to to do with the
23:17 emergency doctors and nurses
23:19 um and also trying to to get some good
23:23 approaches
23:23 to prevent going to the emerge right so
23:26 a good an important piece i think
23:28 there’s there’s work to do
23:30 the last one you mentioned was the
23:32 question of medication coverage and also
23:34 recognition of disability
23:36 because sometimes you get a doctor you
23:38 get the medications you do all you can
23:41 you have this pristine lifestyle
23:43 but despite all efforts both sides
23:46 the migraine is still going on and very
23:48 disabling so
23:50 um i don’t know if you you went up to
23:51 that point and if you uh you you had
23:54 some
23:54 interaction with the disability world
23:56 but it’s not an easy place to be isn’t
23:58 it
23:59 unfortunately that can be just as
24:01 traumatic as the er in a different way
24:04 um so yes again it was about a year and
24:07 a half ago and the migraines got really
24:09 bad but i decided that i i needed to go
24:11 off of work um to really
24:14 deal with this and get it under control
24:16 because i i was trying
24:18 to push through and in doing so um
24:21 just kind of making everything worse so
24:23 i did take some time off work
24:25 um i i was ultimately off work
24:29 completely
24:29 for approximately eight months
24:33 and during that time the first
24:36 few months i was on the unemployment and
24:38 then after that my private insurance
24:40 from work
24:41 kicked in but that’s when i really had
24:44 to go through the ringer in terms of
24:46 paperwork
24:48 in order to basically justify that i’m
24:51 actually sick
24:53 and that required a lot of paperwork on
24:57 the part of
24:58 it was my family doctor who was taking
24:59 care of it at the time so she
25:01 had to fill out enormous amounts of
25:03 paperwork um
25:05 really justifying her own diagnosis of
25:08 what was going on which to me is a
25:10 little bit ridiculous
25:12 and i had to fill out a lot of paperwork
25:14 and go through interviews with the
25:16 people at the insurance who
25:18 were quite rude um clearly did not
25:21 understand what migraine was
25:23 and um yeah basically eventually it got
25:27 accepted for me so i did have coverage
25:29 for
25:30 a certain amount of time but every month
25:32 you i had to check in and they would ask
25:35 me questions
25:36 to evaluate on their terms how i was
25:39 doing
25:39 so they would ask me questions about my
25:42 ability to do activities of daily living
25:44 such as like be able to wash the dishes
25:47 or get dressed or do these things and
25:49 in my case i don’t know if i’m different
25:52 or if this is everyone i mean everyone’s
25:55 different right but
25:56 um when i was even at my worst uh
25:59 i would go walking and i would walk
26:01 every single day because exercise for me
26:03 was a really
26:04 important part of kind of keeping
26:07 i guess my mental health but also
26:09 keeping
26:10 physically fit because when you’re so
26:12 sick it’s really difficult to do other
26:14 types of exercise
26:15 so i would spend the morning in bed
26:19 stick to my stomach and i would be like
26:22 no it’s time to go for a walk so i would
26:24 bring with me my gatorade and a little
26:27 plastic bag in case i was sick and i
26:29 would walk for five kilometers and i
26:31 would come home and i would do this
26:32 almost regardless of how i was feeling
26:34 even if the pain was
26:35 horrible so um this was not something
26:39 that the insurance
26:40 company liked to hear because i was
26:42 honest with them
26:43 and they were like what you can walk
26:45 five kilometers well why can’t you go to
26:47 work
26:48 like wow it’s a little bit different
26:50 because when i go to work
26:52 my job is like very high pressure
26:55 it’s very busy i have to be very
26:57 concentrated not to make any mistakes i
26:59 mean it’s
27:00 i i can’t go to work when i have like a
27:03 drill going into the side of my head
27:06 so there was a big lack of understanding
27:09 about what migraine can be
27:10 and how it can present for different
27:12 people and how people’s experiences
27:14 really change
27:15 so that was very frustrating but i was
27:17 still able to get
27:18 through that from month to month and
27:20 then the most difficult part came when
27:22 it came to time
27:24 time to do like a progressive return to
27:26 work which
27:27 i had really wanted to do but i didn’t
27:30 want to do it too quickly
27:33 i i knew myself that this would not go
27:35 well if i if i did too much at once so
27:38 um i wanted to go slowly
27:41 things were going pretty well i was
27:43 handling work great my migraines were
27:45 more under control
27:46 and then the following month when i had
27:48 to do that check-in with them
27:50 uh they uh they didn’t like that because
27:53 they’re like oh well
27:55 if you can do two days a week at work
27:56 why can’t you do three
27:58 i’m like well because it’s touchy right
28:01 if i’m doing really
28:02 well now and i’m progressing i’m getting
28:04 better like
28:05 you can’t sort of force it to happen
28:08 right now that i’m going to suddenly no
28:10 longer have migraines so
28:12 it had been agreed upon with my doctor
28:14 that it was a good idea
28:16 to keep going slowly but the insurance
28:18 company was pushing pushing pushing
28:20 um demanding all these extra like expert
28:23 um
28:24 opinions from like my neurologist my
28:26 internist and all this and
28:28 i got so tired and so frustrated that i
28:31 just said you know what
28:32 i don’t want this anymore so i just
28:35 i gave up i told the disability that i
28:38 had disability insurance but i just
28:40 wasn’t interested anymore so
28:43 that’s really sad because it’s something
28:45 that i have a right to
28:47 through my work i pay for it i i should
28:50 be entitled to this
28:51 and it was something that was supported
28:53 by my doctor but
28:54 when you’re sick and you’re tired the
28:57 last thing you want to do is argue with
28:59 an insurance company
29:00 um so i really think there’s a lot of
29:03 education to be done with them
29:05 based on like what migraine is and have
29:07 it truly recognized as a disability and
29:10 not just
29:10 something that is just a headache i
29:13 don’t know
29:14 um and make this process
29:17 a little bit less um like i guess
29:20 traumatic for patients who are already
29:23 dealing with a lot
29:24 so um i know with migraine canada you
29:28 are
29:28 starting to address this in your work so
29:30 that’s really fantastic to hear
29:34 yeah i mean i i’ve heard the story and
29:36 i’ve accompanied so many uh
29:38 other people and i’m so glad to have you
29:40 here to verbalize this very honestly and
29:43 very transparently as it is right
29:45 because those are things that people
29:47 sometimes feel very ashamed of
29:50 and they shouldn’t because quite frankly
29:51 i’ve seen so many people
29:55 work in very poor conditions you know
29:58 being very sick
29:59 pushing through being exhausted chopping
30:02 everything in their family lives and
30:04 personal lives so they could go to work
30:07 and so i one of the worst stigma on
30:09 migraine patients is that they are lazy
30:11 and weak
30:12 and that’s the worst because what i see
30:15 in my office
30:16 sometimes i see patients my tears go to
30:18 my eyes because i have migraines myself
30:20 and i cannot imagine working full time
30:23 with 25 days of migraine because when i
30:26 have one i’m
30:27 curled in my bed right so
30:30 i think that’s something we should work
30:32 on to be fair to the insurance companies
30:34 the problem is we don’t have a biomarker
30:36 which means we don’t have a proof right
30:38 we don’t have
30:39 blood levels or imaging things or and
30:42 the diaries are still you know still
30:44 filled by someone so
30:46 um i think hopefully in the future we
30:48 can get some degree
30:50 of marker for migraine that would be a
30:52 great hope
30:53 but in the meantime you’re right we have
30:56 to explain to
30:57 to the uh insurance companies and also
31:00 the employers
31:01 that people with migraine you know
31:03 sometimes can need some adaptations
31:06 and especially even before they’re
31:08 disabled you know just having access to
31:10 water
31:11 or just you know having a no sense
31:13 policy in the workplace
31:14 there’s so much we can do to improve the
31:17 the work productivity of people because
31:20 the last thing people do really are are
31:23 being on full disability because most of
31:25 my patients like yourself
31:27 they want to work because it’s good for
31:29 them because they’ll because they have
31:30 training and expertise like you
31:32 and they say well you know i love my
31:34 work but it’s just i can’t do five days
31:38 so um so there’s a lot to be done and
31:40 now we’re looking into uh
31:42 discussing with lawyers and experts in
31:44 disability and just
31:45 trying to understand the system right
31:47 how does it work
31:49 and in the states for example a migraine
31:52 was not listed
31:53 in as a disability cause so what
31:55 patients had to do
31:56 was to get a diagnosis for depression or
31:59 fibromyalgia or other pains because
32:02 migraine could not work
32:04 so um so i think that we we’ve covered a
32:06 lot of ground here and
32:07 uh thank you so much for sharing uh what
32:10 you went through
32:11 because that’s just by talking about
32:13 that then we can see the problems and we
32:15 can address them
32:16 uh and i i really hope with migraine
32:19 canada uh that we can work on this
32:21 so uh society duvall winner of the uh
32:24 fifth annual contest for short movie of
32:26 migraine moment have a look
32:28 go online and then we are working so
32:32 please uh go on our facebook go on
32:35 migrainecanada.org
32:36 you can sign our petition which is
32:38 mostly just
32:39 collecting names and emails and also
32:41 some support for our actions that
32:43 include a lot of what
32:45 shelley and i have been discussing today
32:47 so i wish you all
32:49 uh to be well to enjoy the summer to the
32:52 best
32:53 and to our next series of webinars and
32:56 interviews during the fall please
32:57 comment
32:58 share and be well thank you shelly on
33:01 that i’ll see you around we’ll keep
33:02 working together for sure
33:04 sounds good thank you
33:11 [Music]