Cluster Headache – All You Need to Know

0:00 [Music]
0:36 welcome everybody and thank you very
0:38 much for your interest in our webinar
0:39 tonight
0:40 i’m wendy gerhart i work with migraine
0:42 canada and happy to be
0:45 hosting this webinar this evening with
0:47 dr kingston who i will introduce in a
0:49 moment
0:50 i want to start off by thanking our
0:52 sponsors
0:53 without our industry support we wouldn’t
0:56 be able to bring
0:57 a lot of our programs and events
1:00 to you so thank you very much to our
1:02 sponsors
1:03 today’s agenda i’m just going to give a
1:05 very brief overview of migraine canada
1:07 for those of you who are not familiar
1:09 with us
1:10 dr kingston has graciously agreed to
1:13 be your host presentation or our keynote
1:16 speaker
1:17 tonight on cluster um and you have an
1:20 opportunity to ask your questions
1:21 and and get some answers from dr
1:23 kingston
1:24 um and we ask that you put your
1:26 questions just into the q a chat
1:29 and we’ll hold them until the end and
1:31 then we’ll work through those
1:34 so for those of you who aren’t familiar
1:35 with migraine canada
1:37 we are a national organization
1:39 supporting all canadians living with
1:40 migraine and headache disorders
1:42 we are federally registered as a
1:44 not-for-profit corporation
1:47 we are young the organization has only
1:49 been in existence for
1:50 about two years which totally shocked me
1:54 coming from um the pharmaceutical
1:57 industry where i’ve been
1:58 working with lots of organizations who
2:00 have been around for you know 25 or 30
2:02 years so we’re very young
2:03 we’re growing quickly and we’re really
2:05 here to support the
2:07 the the community um our board is
2:10 comprised of volunteers
2:12 um we have some healthcare professionals
2:14 on our board and we also have
2:16 a significant number of um people who
2:19 are
2:20 our patients or live with migraine
2:22 themselves
2:23 um we have an executive director and
2:26 we run on the help of volunteers and so
2:30 that’s who we are
2:31 um our mission and vision are very
2:33 simple our vision
2:35 is that canadians living with migraine
2:37 and headaches are diagnosed treated and
2:39 supported so the quality of life is
2:40 optimized
2:41 and our mission is really to improve the
2:43 lives of canadians with migraine and
2:45 other headache disorders through
2:47 awareness support education advocacy and
2:50 research
2:52 we have five strategic pillars and i
2:54 won’t go into detail
2:56 very very common in not-for-profit
2:57 organizations awareness
2:59 education support advocacy and research
3:03 and those are all
3:04 you know i just read them through in our
3:05 mission as well
3:07 um a call to action from you tonight is
3:10 to sign our petition and join our
3:12 growing community
3:13 um you know without your voice
3:16 um and your support we we need to have
3:20 a good backing and a strong community so
3:23 that i can go out and advocate on your
3:24 behalf
3:25 so i encourage you to sign the sign the
3:28 petition and join
3:29 the community and just a little bit of
3:32 housekeeping uh we provide information
3:34 not medical advice
3:36 uh the information that you will be
3:37 presented this evening and discussed may
3:39 not apply to your own medical situation
3:42 and we ask that you discuss your medical
3:44 treatments with your own health care
3:45 provider who knows your
3:46 medical history and with that i’m going
3:48 to turn it over to
3:50 dr kingston after i do a brief uh bio
3:53 from him
3:54 he was born in moncton new brunswick he
3:58 practices are sorry he trained his
4:01 neurology training was at the university
4:03 of toronto
4:04 he received his headache medicine
4:07 fellowship at the mayo
4:08 clinic in arizona and he’s currently
4:11 working as a headache neurologist at
4:13 sunnybrook health
4:14 sciences center and women’s college
4:16 hospital in toronto
4:18 his major interests include cluster
4:20 headache and headache in pregnancy
4:22 and he runs the only dedicated headache
4:24 in pregnancy clinic in canada
4:26 and with that i will turn it over to you
4:28 dr kingston
4:30 all right well thanks thanks so much for
4:32 having me um
4:33 i i get to talk about one of my favorite
4:35 topics today which is which is really
4:37 great and it was exciting to see so many
4:38 people that were
4:39 that were interested in hearing about it
4:41 i know there’s a wide variety of
4:43 folks out there listening from health
4:45 care providers to pharma people to
4:47 patients to family members so
4:49 i’ve done my best to try to make the
4:51 language suitable for everyone but of
4:52 course if there’s something i’ve said
4:54 that’s
4:54 that hasn’t made sense just let me know
4:56 before uh after it afterwards and i’ll
4:58 try to clarify as best i can
5:00 um what i the way that i’m framing this
5:02 is to kind of give everybody an overview
5:04 of exactly what cluster headache is why
5:06 it’s important
5:08 and i think one of the things that i get
5:10 asked often is
5:11 you know why aren’t there more
5:12 treatments for this and why do people so
5:14 few people know about it and
5:15 i hope to shed a little bit of light on
5:17 on um why that’s the case and why
5:20 it can be so problematic there we go so
5:23 i have some you know speaking
5:24 disclosures that i always have to that i
5:26 always share before every uh slide none
5:27 of them are terribly relevant to today
5:29 but
5:29 in the interest of transparency here
5:31 they are um
5:32 so what is cluster headache so we look
5:35 at
5:36 cluster headache is being what we call a
5:37 primary headache disorder
5:39 and when we use the word primary
5:41 headache disorder what that really means
5:43 is we don’t have a known
5:44 underlying cause that’s causing the
5:47 symptoms so
5:48 for example the most common primary
5:49 headache disorder that we would see
5:51 in clinical practice would be migraine
5:53 it doesn’t mean that there isn’t some
5:54 kind of
5:55 generator for migraine it means that if
5:57 we do a scan or if we do blood work
5:59 we’re not seeing an underlying cause
6:00 that’s reversible
6:02 so a cluster headache is another primary
6:04 headache disorder
6:05 the way that we characterize and what
6:06 kind of symptoms we see and and really
6:08 the way that we make a diagnosis of
6:10 cluster headache
6:11 is based on the symptoms that one has is
6:13 it’s a syndrome
6:15 of headaches that are what we call side
6:17 locked so for example you may hear the
6:19 word unilateral which means one-sided
6:21 and migraine can be one-sided too but it
6:24 will often change sides
6:25 with cluster headache and related
6:26 disorders we often see
6:28 side lock tank meaning that it’s always
6:30 on one side and does not change
6:32 sides between attacks um usually
6:35 this is in in in accompaniment with
6:38 what we call autonomic features or
6:41 autonomic symptoms
6:42 when i use the word autonomic that
6:44 really refers to the part of the nervous
6:45 system that
6:46 that is responsible for automatic
6:48 functions that we don’t have conscious
6:50 control over
6:51 and i’ll talk about what exactly those
6:52 symptoms are in a moment
6:54 um i think it’s important that cluster
6:56 headache has had many names throughout
6:58 the ages
6:59 and a lot of them are antiquated now but
7:02 one of the names that it gets that gets
7:03 thrown around a lot is
7:05 is suicide headaches and and i’ll
7:07 explain as to why that is as we go
7:09 forward a little bit
7:10 the way that we characterize headache
7:12 disorders in general and cluster
7:13 headache is no different
7:14 is by calling them either episodic or
7:16 chronic and i think
7:18 one thing that’s important to know is
7:19 that the way that we use the word
7:21 chronic when it relates to headache
7:22 disorders is a little different than
7:24 than how we use it to relate to other
7:26 medical problems
7:27 um episodic in this case means headaches
7:30 that
7:31 come for a period of time and then go
7:33 away for a while and then come back
7:34 whereas chronic means that they last for
7:36 a long time without any significant
7:38 period of reprieve
7:40 and i’ll show you exactly what that
7:41 cutoff is at the moment um
7:44 interestingly if we compare it with
7:46 migraine it’s a little more common for
7:48 us to be fooled and that there actually
7:50 may be something
7:51 underlying that causes um cluster
7:53 headache but it’s
7:55 still the minority of the cases and
7:57 usually there is some
7:58 um features that are a little bit
7:59 different in people who have
8:01 something else causing it that i’ll that
8:02 i’ll explore a little bit with you guys
8:04 i promise i’m not going to go over this
8:06 this nightmare of a slide but i have it
8:08 here
8:09 really to show you what the difference
8:10 is and how we make the diagnosis
8:12 so basically the way that we
8:14 characterize headaches
8:16 um in this class which we call
8:18 trigeminal
8:19 autonomic cephalologists or tax
8:22 of which cluster is by far the most
8:24 common type
8:26 so the way that we describe it are
8:27 headaches that are one-sided
8:29 that last from 15 minutes to 180 minutes
8:33 if they’re untreated so if they don’t if
8:35 someone doesn’t take medicine
8:36 how long will the headache go for that’s
8:38 the cut-off that we that we typically
8:40 use
8:41 and then it should be accompanied with
8:42 what i mentioned as autonomic
8:44 features and if we actually look at what
8:46 that means
8:48 conjunctival injection means redness of
8:50 the eye and usually that would be on the
8:52 same
8:52 side as the headache that can be
8:55 also accompanied by lac cremation which
8:57 means watering of the same
8:59 of the eye on the same side we can also
9:02 see
9:02 nasal congestion on the same side as the
9:04 headache and sometimes even
9:07 forehead sweating and some and ptosis
9:09 and meiosis refers to changes in the
9:11 sizes of the pupil
9:12 on the same side of the headache when
9:14 the headache is active
9:16 and usually we also look at the
9:18 frequency by which those headaches
9:19 happen so not only how long does each
9:21 individual headache last for how often
9:23 is it happening
9:24 and we look at that as being anywhere
9:26 from once every other day
9:27 to upwards of eight times per day and if
9:30 you contrast that to people who have
9:31 migraine for example typically
9:33 there would be one prolonged headache
9:35 during the day of course there’s
9:36 exceptions to every rule and
9:38 perhaps a headache can be treated and
9:39 then come back with migraine but it is
9:40 quite quite a different disorder for the
9:42 most part
9:43 and here’s how we make that distinction
9:45 between episodic and chronic as i
9:47 mentioned before
9:48 so an episodic cluster headache means
9:51 that
9:52 there is a there is a period of time
9:54 where there is at least
9:55 three months between headache episodes
9:58 and chronic means there is no period
10:01 of three months between episodes of
10:02 headache so
10:04 thankfully um most patients with cluster
10:07 headache
10:08 have what we call episodic cluster
10:09 headache because the chronic cluster
10:11 headache
10:12 is a much more difficult disorder to
10:13 treat unfortunately in a very in a very
10:15 difficult one
10:16 for people to experience so as i
10:19 mentioned you know these autonomic
10:21 symptoms we see
10:22 can be paramount at making and making
10:24 the diagnosis
10:25 and the watery eye is probably the most
10:27 common about 75
10:28 of all people with cluster headache do
10:30 have a watery eye on one side when they
10:31 get this headache
10:33 and then the red eye is the second most
10:34 common followed by the nasal congestion
10:37 and and the word horner’s syndrome
10:39 refers to
10:40 a little bit of a droopy eyelid a change
10:42 in the pupil size
10:43 and potentially a change in the sweating
10:45 that all happens at the same time
10:47 and that can sometimes happen even
10:49 between attacks for people who have
10:50 really really frequent headache attacks
10:54 so interestingly if you think about and
10:56 i’m sure you know migraine
10:58 for example is a very common disorder
11:00 that um
11:01 i would imagine every single person on
11:03 here knows somebody with migraine
11:04 and here you hear someone with migraine
11:06 what they want to do is
11:07 go lay in bed tell everyone to leave
11:09 them alone so that they can
11:10 get some rest and feel better contrast
11:13 that to people with cluster headache who
11:14 feel very agitated and often restless
11:16 during an attack
11:17 if you actually do a screen of people
11:19 who have cluster headache
11:20 only about three percent of people with
11:23 a diagnosed cluster headache
11:24 feel like they can actually sit still
11:26 during an attack so people
11:28 will rock back and forth they’ll pace
11:30 sometimes they’ll bang their head
11:31 against the wall i’ve heard people jump
11:32 into
11:33 a frozen pool before jump into the snow
11:36 all these things
11:37 really do happen i i like to include
11:40 this picture because it was it was at a
11:42 um
11:42 a headache conference that i attended a
11:44 couple years ago from uh these actors
11:46 were depicting artists depictions of
11:48 what
11:49 people experienced during a cluster
11:50 headache and i think that this
11:52 really uh hits home in that many people
11:55 who have cluster headache
11:56 will describe a sense that there’s
11:58 almost a foreign body in their eye
12:00 on the same side as as the headache
12:02 episode so this is
12:03 very interesting but there is some other
12:05 features with cluster headache that make
12:07 it a little bit different
12:08 and and personally what i think makes it
12:09 one of the more interesting
12:11 problems that i see in that there is
12:13 what we call a
12:14 circadian periodicity and what that
12:17 means is there seems to be a very clear
12:19 effect of the time of day
12:21 so sometimes people who have cluster
12:22 headache can actually set their watch by
12:24 the time they’re going to get their
12:25 cluster headache
12:26 and they’ll know every time on this day
12:28 i’m going to get it at this time i’m
12:29 going to get it
12:30 and the same thing goes with what we
12:32 call a circ annual periodicity and what
12:34 that means is that there’s a seasonal
12:36 predilection
12:37 meaning there may be one season where
12:38 their headaches are very very very
12:40 active
12:40 and then they may go away for half the
12:42 year and then come back and i’ll show
12:44 you a little bit of data
12:45 on on some surveys uh that were taken
12:47 worldwide
12:48 to demonstrate this when i say migrant
12:51 features
12:52 you know if you hear about someone with
12:53 migraine you may hear that they’re
12:55 sensitive to lights or sounds or they
12:57 feel
12:58 nauseous those are less common in in
13:01 people with cluster headache but
13:02 sometimes when you do
13:03 see them they for example may be
13:05 sensitive to light but only in the eye
13:07 that’s affected
13:08 by the cluster headache only on that
13:10 same side so sometimes that can be a
13:12 reason why things get a little bit
13:13 misconstrued in terms of a diagnosis so
13:17 this circadian periodicity that like the
13:20 time of day effect that i mentioned can
13:21 actually be pretty striking
13:23 and i’ll show you exactly um why that is
13:25 i think in the next slide
13:26 but for what it’s worth um there does
13:29 appear to be an association
13:30 in terms of genes that people carry for
13:32 cluster headache that also have
13:34 um some commonality with people who have
13:38 genes for certain
13:39 sleep disorders although that
13:40 association is not entirely fleshed out
13:42 and is a source of uh
13:44 what we need to study a little bit more
13:46 to fully flesh out
13:49 so interestingly in 2011 there was a
13:52 study that was done
13:53 um interviewing people sort of around
13:55 the world uh
13:56 and no matter where people live no
13:58 matter what time zone they were in
14:00 um the single most common time of day
14:03 to have a cluster headache attack was at
14:05 about 2 a.m
14:07 so very very interesting
14:10 you know what also can be striking about
14:13 this time of day effect is that it can
14:14 make people afraid to go to sleep
14:17 so people can then start to develop
14:18 sleep disorders because they know oh my
14:20 god i’m going to wake up
14:21 at 2 a.m with this horrible headache not
14:24 be able to sleep pace around the room
14:25 until it goes away
14:27 and it’s really just excruciating and
14:28 this this can lead to anxiety about
14:30 going to sleep
14:31 which is a co which is something we call
14:33 it’s a long
14:34 nonsense word but it’s cephalologophobia
14:37 which means fear of getting headache
14:38 essentially
14:40 um for whatever reason you know the
14:44 seasons seem to be a little bit
14:45 different in different countries
14:46 um when things are most active that prob
14:48 that may have an effect of sunlight but
14:49 we’re not completely sure about that
14:51 but for what it’s worth in in north
14:53 america spring and fall
14:55 uh cluster heading seems to be a little
14:57 bit more active compared with summer and
14:58 winter
15:00 some people will cycle differently some
15:02 people with episodic
15:03 cluster headache will notice a very
15:05 clear you know
15:06 every fall every spring some people will
15:09 be every fall
15:11 some people it’s only every two years
15:13 and
15:14 and often people will follow the same
15:16 trajectory
15:17 but you know this is a disorder that
15:19 people have for many many many many
15:20 years and it can and it’s
15:22 its pattern can change a little bit over
15:24 time as someone ages
15:26 so this is another sort of uh graph of
15:29 the most common time of year
15:31 people will develop symptoms and this
15:32 one was in north america and again
15:34 it very clearly shows peaks sort of in
15:37 october
15:38 and then again in march and april
15:41 so the other things that i think are
15:42 really important that i’m sure there’s
15:44 at least a few people on here that can
15:46 can relate to this is that there’s a big
15:48 delay in diagnosis
15:50 so the average time from the onset to
15:53 diagnosis
15:53 is five years and when people first go
15:57 to the doctor with these symptoms
15:58 only about 20 actually receive the
16:01 correct diagnosis but
16:02 the first time they go to the doctor um
16:05 and i think this can be important just
16:06 because of the severity of these
16:08 headaches you know
16:09 if you i don’t have a slide relating to
16:11 this um
16:12 in this particular talk but if you for
16:15 example
16:15 have one person who has experienced
16:18 kidney stones
16:19 childbirth and cluster headache and
16:20 they’ve experienced all of them
16:24 cluster headache is always rated as the
16:26 most painful and it’s often referred to
16:28 as the most painful condition known to
16:29 human beings why and that’s why it’s so
16:31 important
16:32 and for what it’s worth about 55 of all
16:35 people with cluster headache have
16:37 have experienced some suicidal thoughts
16:40 during these headaches so this is it’s
16:41 nothing to shake a stick about it it’s a
16:42 really important thing
16:44 to get treated for what it’s worth we
16:46 know that alcohol
16:47 can be a trigger for people with cluster
16:49 headache but interestingly
16:50 it seems to only be a trigger when
16:52 someone is in that susceptibility period
16:54 so let’s say someone has cluster
16:55 headache
16:56 and they tend to only really cycle in
16:59 let’s say the spring
17:00 if they have a beer in the spring they
17:03 may get a headache
17:04 but if they have a beer in october no
17:06 problem doesn’t doesn’t cause a headache
17:07 so it’s a very interesting
17:09 uh very interesting disorder from that
17:11 and for what it’s worth we know that
17:12 there’s also
17:13 certain alcohols that tend to be more
17:15 triggering than others and and for what
17:17 for whatever reason we’ve we’ve noticed
17:19 that beer
17:20 seems to be a little bit more triggering
17:21 than other types of alcohol
17:23 um about 75 of individual attacks are
17:27 less than 60 minutes
17:28 so sometimes they can be brief and that
17:30 can make it really tricky to treat them
17:32 which is something i’ll touch on in just
17:34 a moment um
17:35 there is some people who will notice
17:38 during one cluster
17:40 period so that is to say while it’s
17:42 active
17:43 and then you compare it to the next time
17:44 they developed it where it can switch
17:46 sides
17:47 but that’s a very very small amount of
17:49 people who experience cluster headaches
17:50 so that’s the minority of people
17:53 so interestingly and i like to share
17:55 this statistic because
17:56 um it’s i don’t know really what it says
18:00 about
18:00 about how well we’re recognizing this
18:02 but i still think it’s an interesting
18:03 thing
18:04 so for example if i’m teaching a group
18:06 of residents one question that i’ll
18:07 often ask them is
18:08 who here has seen a case of multiple
18:10 sclerosis who here has seen a case of
18:13 parkinson’s disease inevitably everyone
18:15 in the audience will raise their hand
18:16 for both of those questions
18:18 but if i ask the same question and say
18:20 how many people here have seen a case of
18:22 cluster headache
18:23 you’d be surprised how few have actually
18:24 seen them and i know there are there are
18:26 residents who go through their entire
18:27 neurology residency
18:29 without actually having seen a case of
18:31 cluster heading because it’s not being
18:32 recognized enough which is
18:34 which is unfortunate because this it
18:36 occurs at the same prevalence
18:38 in our population as multiple sclerosis
18:40 and parkinson’s disease
18:42 so it’s it’s not that it’s not there
18:44 it’s it’s that we’re not either
18:46 either we’re not seeing it or we’re not
18:47 recognizing it and i think there’s a
18:48 couple of reasons for that that i’m
18:49 going to touch on
18:51 um for what it’s worth it rarely occurs
18:53 in the pediatric population so it’s rare
18:55 for it to start before
18:56 age 18 but it has been seen so there are
18:59 reports of that
19:00 and again it’s also pretty rare for it
19:03 to occur occur
19:04 in older age and when we see it occur in
19:06 an older age
19:08 that’s when we really need to think
19:09 about looking and going going a little
19:11 deeper
19:12 looking to make sure we’re not missing
19:13 something else that could be causing the
19:14 symptoms
19:17 because people i want you all to think
19:20 about what it’s like when you go to the
19:21 doctor for a moment
19:22 so let’s pretend that you have seen your
19:26 family your family doctor you’ve just
19:28 developed this horrifying headache
19:30 and they say okay i’m not sure what this
19:32 is i’m gonna send you to
19:34 let’s say a neurologist okay let’s say
19:37 on a good day
19:38 you have a wait a wait time of a couple
19:40 of months to see a neurologist you know
19:42 at the best of times by the time you get
19:44 to the neurologist your headaches may be
19:46 gone
19:47 and maybe you’ll say well geez it’s gone
19:49 why would i even bother keeping my
19:50 appointment
19:51 and i think a lot of the times that is
19:53 what happens and because that happens or
19:56 because when you get to the neurologist
19:57 you’re no longer having symptoms
19:59 they’re less likely to keep seeing you
20:00 because you’re you know doing well
20:03 and i think that um leads a lot of
20:05 people to get lost to follow up
20:07 for a multitude of reasons like i just
20:09 mentioned and for the same reason
20:11 it becomes harder and harder and harder
20:13 for doctors who do research
20:14 in this condition to enroll people
20:16 because we’re often not getting them a
20:18 fast enough
20:19 or keeping them long enough um and
20:22 because
20:23 the headache could conceivably go away
20:25 for two years and then come back
20:26 sometimes you know someone who has it
20:28 may think oh geez you know i guess
20:30 i guess maybe i don’t need a doctor for
20:32 this anymore and then it comes roaring
20:34 back and then the whole process starts
20:35 over again
20:37 so people get misdiagnosed a lot the
20:40 single most common misdiagnosis would be
20:42 migraine
20:43 sinusitis it kind of i find that one a
20:45 little shocking um
20:46 but but there it is about 21 have been
20:50 uh misdiagnosed as having sinusitis and
20:52 then sometimes allergies and dental
20:54 issues
20:54 again i find those ones a little hard to
20:56 swallow but there it is
20:58 um so there are some issues with why
21:00 people get misdiagnosed
21:02 that i think is really important for
21:03 people to know as well as i mentioned
21:05 before
21:06 if someone is sensitive to light that
21:08 may lead someone down the wrong path and
21:09 being led to a diagnosis of migraine
21:11 when sensitivity to light particularly
21:13 if it’s in one eye is allowed
21:15 in cluster headache sometimes those
21:18 autonomic symptoms that i that i
21:20 described to you before those can be
21:22 mistaken as as symptoms of sinus disease
21:24 and i think that’s probably why that
21:26 misdiagnosis happens a lot and this one
21:28 is really unfortunate um
21:30 while we know that clutch cluster
21:32 headache does appear
21:33 more often than men compared with women
21:35 unlike migraine
21:36 um women may have attacks that are a
21:39 little different than men sometimes they
21:40 don’t fit the mold just quite so
21:42 perfectly maybe their attacks are just a
21:44 little longer
21:45 or maybe they don’t cycle quite the same
21:46 way men do and i think if a woman is
21:49 coming in with a headache that doesn’t
21:50 quite fit into a nice little box they’re
21:52 a lot more likely to see
21:53 an incorrect diagnosis and be labeled as
21:55 migraine and i’ve seen that
21:57 countless times in my own practice in
21:58 fact my very first patient i ever had
22:01 when i when i finished my fellowship and
22:03 started uh headache practice
22:05 uh she had cluster headache and she was
22:08 told that it was impossible for her to
22:09 have cluster headache because she was a
22:11 woman
22:11 so these sorts of beliefs and
22:14 and and practices are really out there
22:17 um and that’s very unfortunate because
22:18 even if it is
22:19 even if the ratio really is three to one
22:22 men to women there’s still lots of women
22:23 out there that have
22:24 that have cluster headache and we have
22:25 to be open-minded
22:27 so the reasons why it can be
22:30 misdiagnosis there’s
22:31 not just the reasons i stated there’s
22:33 also there’s also the word
22:35 cluster in the diagnosis that can in
22:38 itself
22:39 be a little bit misleading and one of
22:41 the common
22:44 incorrect terms that sometimes people
22:46 see get labeled as
22:47 as having cluster migraines now
22:51 cluster migraines that really is it’s
22:54 sort of a descriptive term but it’s not
22:55 a diagnosis
22:57 so what i hear what i think about when i
22:59 hear someone saying they have cluster
23:00 migraine is one of two things
23:02 it means either their doctor is not sure
23:05 if they have cluster headache or if they
23:06 have
23:06 migraine or they have migraine that
23:09 tends to occur
23:10 on back to back to back days that
23:11 cluster together therefore someone
23:14 believes they may have cluster headache
23:15 because they are clustering
23:17 and i think the term cluster headache is
23:19 part of the reason for its own
23:20 misdiagnosis
23:21 for what it’s worth and then you have to
23:24 keep in mind that
23:25 while cluster headache is you know
23:28 it’s not uncommon but it’s not super
23:30 common whereas migraine
23:32 is incredibly common and it’s not
23:35 impossible in fact it’s not unlikely
23:37 for someone to potentially have both
23:39 problems so there are definitely people
23:41 who have an
23:42 independent diagnosis of migraine and a
23:45 diagnosis of cluster headache
23:47 and i think that if we have a history of
23:48 someone who’s had a previous
23:50 diagnosis of migraine and then comes in
23:52 with a new headache
23:53 it gets the new headache may get
23:55 overlooked or attributed to being
23:57 migraine and i see and i do definitely
23:58 see that more common
24:00 in female patients compared with male
24:02 patients
24:04 so pathophysiology means you know why
24:07 does it happen what’s the mechanism by
24:09 way this
24:09 uh this headache is generated and i
24:12 think when it comes to many primary
24:14 headache disorders like cluster headache
24:16 we don’t
24:16 know exactly there is a lot of
24:19 thoughts out there we know that uh it
24:22 may represent a spectrum of disease
24:24 because there is
24:25 two or three other related headache
24:27 disorders
24:28 that we differentiate based on the
24:31 timing of the attack
24:32 so is it within that 15 to 180 minutes
24:35 and does it mean criteria for cluster
24:37 if it’s shorter and there’s more
24:39 headache attacks per day that may be a
24:41 completely separate diagnosis
24:43 um and that can be important because it
24:45 can mean that
24:46 treatment of each diagnosis is a little
24:48 bit different but we do believe there is
24:50 some a little bit of overlap
24:52 and sometimes making sure that the
24:54 timing of each headache attack
24:56 is is tracked properly can be really
24:58 important and actually coming to the
25:00 proper diagnosis
25:02 so we know that there are structures in
25:04 the brain that that light up a little
25:06 bit
25:06 when we actually image somebody when
25:08 they’re having a cluster headache attack
25:10 and we know that parts of the brain
25:11 called the thalamus and the hypothalamus
25:14 are probably related at generating this
25:16 disorder
25:17 exactly what they do and what’s wrong is
25:21 still to be determined but there is some
25:23 interplay between what we call the
25:24 trigeminal nerve which is responsible
25:26 for the sensation of
25:28 of the face and the head on that side um
25:31 as well as what we call the trigeminal
25:33 cervical complex which has to do with
25:36 the nerves innervating the back of the
25:37 head
25:38 as well as the nerves coming from the
25:40 upper part of the neck called the
25:42 cervical spine
25:43 and we think that the interplay between
25:46 all those structures together calls
25:48 forms what we call the trigeminal
25:49 autonomic reflex
25:51 and that’s why the pain and the
25:53 autonomic symptoms tend to come together
25:58 so you mentioned that unlike migraine
26:01 it’s not uncommon for us to find
26:03 you know something else that’s going on
26:05 that could be that could be playing a
26:06 part
26:07 often that something else is nothing to
26:10 worry about
26:10 but it may impact treatment so for
26:13 example i
26:14 put on here some that are very uncommon
26:17 but not impossible things that we often
26:19 go looking for
26:20 and we often go looking for those
26:21 specifically if something doesn’t fit
26:24 so if we hear okay you have cluster
26:26 headache but there’s just something
26:28 that’s not right maybe the attacks are
26:30 longer than they should be maybe they’re
26:31 shorter than they should be
26:33 maybe it started later maybe it started
26:35 in a different way than it should
26:37 those cases we may actually be more
26:38 likely to go looking for these things
26:40 but there is some other things that we
26:41 find even in people who fit the mold
26:43 just perfectly
26:45 we have we have noticed that people with
26:47 cluster headache are more likely
26:49 to have an abnormality on their
26:51 pituitary gland
26:53 and that abnormality can range anywhere
26:55 from a small growth
26:56 called a an adenoma which can secrete
27:00 hormones
27:00 or sometimes secrete nothing and it may
27:02 just be a small growth that never
27:04 actually plays a part into your overall
27:06 long-term health so
27:08 even if we find this it doesn’t mean
27:09 it’s going to be life-threatening or
27:13 affect one’s longevity or or impact
27:16 with other health problems but sometimes
27:19 if we do find one and it secretes
27:21 hormones and we treat it
27:22 the headaches can actually get better so
27:25 that’s an important reason why we
27:26 sometimes go looking for it and we
27:28 especially do it when things don’t fit
27:30 or when our first line treatments don’t
27:32 seem to work what we’ll often do when we
27:34 see
27:34 someone who’s coming in with a first
27:36 diagnosis of cluster headache
27:38 is you know my practice you know and i
27:40 granted every every
27:41 every physician has a different practice
27:43 but i would argue that the research
27:45 would support
27:46 that most or or if not all patients with
27:49 cluster headaches should have an mri
27:51 brain
27:51 to take a look at the pituitary glands
27:54 specifically
27:56 um and sometimes just some baseline
27:58 hormonal screening so things like
28:00 thyroid screening screening for
28:02 testosterone or screening for
28:06 a hormone called prolactin can be
28:07 helpful in that it may point us towards
28:10 something else going on or it may help
28:12 us impact
28:13 uh it may help us make treatment
28:14 decisions
28:16 for what it’s worth we do sometimes also
28:18 recommend a sleep study
28:19 and that can be for a few reasons number
28:22 one if someone does have sleep apnea
28:25 which is a condition of disordered
28:26 breathing and sleep where people
28:28 uh they may gasp in their sleep they may
28:30 snore a lot
28:31 they may um they may actually you know
28:34 be depriving themselves of oxygen
28:37 because of this condition
28:39 and we know that untreated sleep apnea
28:41 is also a risk factor for things like
28:43 stroke
28:44 and high blood pressure and coronary
28:45 artery disease but
28:47 we also know that if we treat sleep
28:48 apnea in a cluster headache patient
28:50 their headaches can get better and
28:52 interestingly enough we have found that
28:54 there’s some people
28:55 with with what i call the episodic
28:57 cluster headache who may only have
28:59 symptoms of sleep apnea
29:01 while their headaches are active in that
29:02 sort of perhaps in the fall or in the
29:04 spring but in other times of year they
29:06 don’t seem to have sleep apnea
29:07 so even if we find it it may only need
29:10 to be treated
29:11 when the headache is active and not at
29:12 other times of the year for what it’s
29:13 worth but
29:14 it can also be a reason why a sleep
29:16 study may not give us a diagnosis of
29:18 sleep apnea
29:19 so it’s also important that if someone
29:21 is getting it done
29:23 a proper sleep study should actually be
29:24 done while the headache is active
29:27 so there are ways in which we treat and
29:30 there are
29:31 um different strategies that we employ
29:33 for treatment and wendy just give me a
29:35 shout if i’m i’m close to timing
29:37 um but uh we know that
29:41 episodic cluster headache patients there
29:43 may be a couple of different types of
29:45 treatments they need
29:46 so one thing we call is abortive or
29:48 rescue treatment
29:49 so what do you do when the headache is
29:51 happening to try to get rid of it and
29:53 feel better
29:54 then we have what’s called transitional
29:56 treatment so transitional treatment is
29:58 something you might take at the
30:00 beginning of a cluster cycle
30:02 with the aim of reducing the duration of
30:04 the cluster cycle
30:05 reducing the overall number of headaches
30:07 in that cluster cycle
30:09 or reducing the number of headaches per
30:11 day during that cluster cycle
30:13 but it’s not something you’re on long
30:15 term in between cluster cycles
30:17 whereas proper preventive therapy means
30:20 for example if you have someone with
30:22 chronic cluster headache or if you have
30:24 someone with
30:25 really frequent cycles of cluster
30:27 headache those people may need to be on
30:29 some kind of preventive medication year
30:31 round
30:32 so some patients with cluster headache
30:34 need one of these types of treatments
30:35 some people need two
30:36 some people need all three depending on
30:39 how bad things are
30:42 the problem we run into is because it’s
30:45 hard to enroll people for a lot of the
30:46 reasons i stated you know
30:48 sometimes it’s hard to catch people at
30:50 the beginning of their cluster headache
30:51 cycle
30:52 maybe neurologists don’t get referred
30:53 these people or get to see them until
30:55 their class their cluster headache cycle
30:57 is over with so it can be hard to know
31:00 um when to enroll someone in a study and
31:02 even in some of the newer studies we
31:04 have
31:04 if we’re initiating a new medicine they
31:06 often have to do a screening
31:08 first to see what their baseline is like
31:10 so there may be a couple weeks at the
31:12 beginning
31:12 where we’re getting a baseline screen
31:14 before we introduce an intervention
31:17 so it’s not really representative of
31:19 starting a medicine right at the
31:20 beginning of a cluster headache cycle
31:22 so even the way that our studies are
31:24 designed are not perfect
31:25 for what we do see in real life so a
31:28 couple of things we think about
31:29 in terms of rescue treatment and there’s
31:31 a couple things that i want to make sure
31:32 that that everyone
31:33 um either who has this or who who treats
31:36 people with it
31:37 or who knows someone who has it um can
31:40 can maybe help out help them out with it
31:42 and i think the most important thing to
31:44 think about
31:45 is oxygen and what’s interesting is
31:48 it’s what we call level a evidence
31:51 meaning it has the strongest evidence
31:52 out there for
31:53 its use meaning we know it works and
31:56 it’s important because upwards of 80
31:58 80 of all people with cluster headache
32:00 will see a relief of their individual
32:02 headache episode
32:03 within 15 minutes of administration of
32:05 oxygen but
32:07 here are the problems we see with oxygen
32:09 sometimes oxygen is not delivered
32:11 properly
32:11 sometimes if someone goes to let’s say
32:13 the emergency room they get
32:15 oxygen put in their nose by what we call
32:17 a nasal cannula
32:18 that is not sufficient so we know that
32:20 for oxygen to be delivered properly
32:22 during a cluster headache cycle it needs
32:24 to be high flow
32:26 oxygen so at least 12 to 15 liters of
32:28 oxygen per minute
32:29 and it needs to be delivered by a face
32:31 mask and if there are holes in the face
32:33 mask those holes should be filled
32:35 and a lot of those things are things
32:37 that i sometimes have to troubleshoot
32:38 with someone
32:39 if they come and see me and they say hey
32:41 you know what i’ve already had a trial
32:42 of oxygen it really doesn’t help me
32:44 sometimes one of those things was
32:45 missing along the way and there is even
32:48 some
32:48 more recent work to suggest that even
32:51 higher levels
32:52 of oxygen even higher flow oxygen levels
32:55 can be can
32:56 be helpful for people who don’t respond
32:57 to lower levels
32:59 the other problem we run into is because
33:02 as i mentioned
33:02 lots of people who have these headache
33:05 attacks
33:06 their individual headaches may be less
33:07 than 60 minutes in fact many of them are
33:10 so introducing an oral medication
33:13 is often not helpful because to actually
33:15 absorb
33:16 a medicine through your stomach to then
33:18 have it reach its peak concentration in
33:20 your blood
33:21 often takes upwards of an hour so
33:23 actually taking a medicine orally is
33:25 often not the answer so we have to think
33:26 about other roots
33:28 so that’s why sometimes we have to use
33:29 um
33:32 intranasal formulations so there is
33:34 medicines called
33:35 zomitryptan and sumatriptan which can be
33:38 introduced into the nose
33:40 as well as sometimes lidocaine can be
33:42 used for people maybe who can’t take
33:44 sumatriptan or or or zomatrypton for
33:47 other medical reasons
33:48 and then we actually have injectable
33:49 therapies so assume sumatran actually
33:51 comes in an injectable level and it has
33:53 a
33:53 and it’s been studied widely and shown
33:55 to be very effective but the problems we
33:57 have here is
33:58 it’s not reasonable cost effective or
34:00 safe for people to take this
34:02 you know eight times a day if they have
34:04 um very high frequency cluster headache
34:06 episodes and i kind of mentioned a
34:08 little bit about some of the issues with
34:09 oxygen but then there is some of the
34:11 the issues i haven’t mentioned like it’s
34:13 not always practical to carter out an
34:14 oxygen tank with you
34:16 um which kind of goes without saying so
34:18 um and then
34:19 for some depending on where people live
34:21 and what uh
34:22 what insurers they’re dealing with it’s
34:23 often not covered so there’s often some
34:26 out-of-pocket
34:26 uh costs that come with with hooking up
34:28 oxygen that we don’t often think about
34:30 and sometimes we’re guilty of that as
34:31 doctors about not always thinking about
34:33 these things
34:35 then the transitional treatment which i
34:36 mentioned you know these things are
34:39 also imperfect um but they do they can
34:42 really work
34:43 so sometimes we use oral steroid
34:44 medications like prednisone or
34:46 dexamethasone
34:47 and those can work at both shortening
34:49 and decreasing the severity of the
34:51 headache
34:52 cycle of that cluster period but you
34:54 know these medicines are not nothing
34:56 they
34:56 are uh they’re part and parcel with
34:58 their own side effects with their own
35:00 problems and we have to be careful about
35:01 you know
35:02 can we give this to the right person can
35:03 we do it safely are we doing it too
35:05 often
35:06 and we have to make sure we make these
35:07 decisions with a patient as well
35:10 and then injections can be injections
35:12 and infusions can be reserved you know
35:13 for people who just
35:15 you know don’t have an effect from the
35:16 standard oral medications
35:19 but interestingly we have we have um
35:22 a procedural treatment that actually has
35:24 really strong evidence
35:26 this the problem with this again is you
35:28 know there’s there’s not there’s not
35:29 every provider out there who can
35:31 who can actually do these procedures so
35:33 sometimes it has to be done by a
35:34 neurologist sometimes by a pain clinic
35:36 sometimes sometimes family physicians
35:38 actually know how to do this sometimes
35:39 emergency room physicians
35:41 know how to do this but um it is
35:43 important that it gets
35:44 that these get done with a local steroid
35:46 medication
35:47 um and we know that if they’re done
35:49 right at the beginning of the cluster
35:51 headache cycle
35:51 they can actually be effective at
35:53 reducing the uh the overall frequency
35:56 and duration of the uh of that cluster
35:59 headache cycle
36:02 and you know as of very recently and
36:04 this is pretty exciting um because
36:06 if we look at what’s come out recently
36:09 um
36:10 in terms of evidence-based treatments
36:11 for cluster headache there hasn’t been a
36:13 whole lot
36:14 but as of just very recently a
36:16 medication called mgality
36:18 has come out initially it was studied
36:20 and designed for migraine
36:22 but don’t when it’s dosed differently
36:24 and delivered at the beginning of a
36:25 cluster headache cycle
36:27 it also has had proven benefit for
36:29 people with episodic
36:30 cluster headache and it has just
36:33 actually just been recently approved in
36:34 canada
36:35 and as of today um we’re allowed we’re
36:38 able to prescribe it and enroll people
36:40 in the uh in the patient support program
36:42 to help them actually have access
36:43 to mgality for cluster headaches so this
36:45 is a i guess a timely uh
36:47 timely day to be talking about this um
36:49 it is dosed differently than the
36:51 migraine dose if anyone here is familiar
36:52 with it
36:53 and the way that it’s dosed is at the
36:56 very very very beginning
36:57 of the cluster headache cycle you’re
36:59 given three injections
37:01 and then that period that’s continued
37:04 every month until that cluster headache
37:06 cluster headache cycle subsides so
37:08 that’s the way that we
37:10 that’s the way that we use it there are
37:12 a lot of other preventive treatments so
37:14 things that can be used year-round
37:16 either for people with really frequent
37:17 cluster headache cycles or people with
37:19 chronic cluster headache
37:20 but again we lack a lot of evidence into
37:23 what is helpful and what isn’t
37:25 and a lot of the medicines that we use
37:26 don’t have a huge amount of evidence to
37:28 support their use it doesn’t mean they
37:29 will work
37:30 um certainly speaking i know lots of
37:32 people who who’ve had really good
37:34 effects from all these medicines
37:36 but it just means that there’s a little
37:38 bit less
37:39 certain a bit a bit less certainty and
37:42 often the medicines are a little messier
37:44 compared with some other treatments if
37:45 you look here none of these medicines
37:47 were designed
37:48 for cluster headache doesn’t mean they
37:49 will work but there is also some other
37:52 exciting stuff coming out you know
37:53 um there is a treatment called
37:55 non-invasive vagus nerve stimulation
37:58 which is something um we briefly had it
38:01 available in canada
38:02 but it’s going to be available again
38:03 very very shortly i believe
38:05 um and it is something that can deliver
38:07 pulse pulses to the neck
38:09 and you can do it um throughout the when
38:11 someone has episode cluster headache
38:13 it’s actually been shown to help
38:14 reduce the burden of headache in about
38:16 half of patients so
38:18 um the good news about it is it’s well
38:20 tolerated very few side effects are
38:22 associated with it
38:23 so it may be a really good choice for
38:25 people who who have a hard time with
38:27 medicine
38:28 or are prone to side effects of
38:30 medication or maybe they have medical
38:31 indica
38:32 medical problems that prohibit them from
38:34 using some other medications
38:36 um then there is some you know kind of
38:39 scary
38:40 sounding surgical options that we really
38:42 don’t employ very often
38:43 um either because the benefit of them
38:46 does not
38:47 seem to be worth the risk or they’re not
38:50 available
38:51 widely or they’re not available anymore
38:53 or there’s no one to do them
38:57 so there is a few things that are
38:58 emerging that i’m sure anybody who’s
39:00 read about
39:01 cluster headache or is dealing with
39:02 cluster headache has certainly thought
39:03 about or read about and is wondering
39:05 about
39:06 and the most common thing you’ll hear
39:08 about if you read about upcoming
39:10 treatments
39:10 in cluster headache is psychedelic
39:12 substances and specifically
39:15 psilocybin containing mushrooms the jury
39:18 is still
39:18 out as to whether these are truly
39:20 effective or not but
39:22 you know and we always have to be very
39:23 careful when we interpret
39:26 data that we get from just surveying
39:28 people
39:29 because it’s it’s imperfect you know of
39:32 course we need to do proper trials to
39:33 know whether or not these are effective
39:35 but for what it’s worth there is some
39:38 good
39:38 anecdotal data at least anecdotal just
39:41 means
39:42 data taken from people who have been
39:43 dealing with this problem
39:45 that using using these
39:48 psilocybin mushrooms and what we call
39:50 microdosing so that would mean
39:52 dosing below the level of giving you a
39:55 hallucinogenic property
39:57 uh can actually be effective for some
39:59 people
40:00 this is nowhere near ready to be
40:01 prescribed by doctors yet but there is
40:03 some trials that are ongoing throughout
40:04 the world and you know hey
40:06 if it uh i hope that it that it helps
40:09 and i hope that the trials are positive
40:10 to give us just one more option that we
40:12 can give to people
40:16 and there is you know um there is a
40:18 support group for anyone who i’m sure
40:20 anyone who’s attending this who hasn’t
40:22 heard of the cluster buster support
40:23 group
40:24 and there is um advice and data
40:27 on this this type of treatment on their
40:29 website for what it’s worth
40:31 [Music]
40:32 the other thing i think that’s important
40:34 to mention is that we do see a higher
40:36 level of substance abuse
40:39 in people who have cluster headache
40:40 compared with the general population
40:42 whether that has to do with cause or
40:44 effect or coping with a really terrible
40:46 illness
40:47 i just don’t think we know but i do
40:49 think it’s an important thing that
40:51 everyone
40:51 who treats and everyone who knows
40:53 someone with cluster headache is aware
40:54 of
40:55 and i think it also points out that we
40:57 probably need to do better at just
40:58 finding more treatments i think i think
41:00 that’s a that’s a pretty important thing
41:01 to to talk about um so here’s what i
41:04 think everybody should should really
41:06 know about and ask for
41:08 when if and when they think they have
41:09 this or they’re talking to their doctor
41:11 or their they know they have it and
41:13 they’re seeking out treatment so
41:15 recognize that things can be cyclical so
41:18 keep your appointment you know even if
41:19 you’re feeling better
41:20 by the time you get the appointment keep
41:21 it um take note of
41:24 how long your individual attacks for
41:26 they can be terrible but time them
41:28 time them even with your phone and then
41:31 time how often they happen sign them how
41:33 many times per day because that can be
41:34 really paramount coming to the correct
41:36 diagnosis
41:37 because that actually really can and i
41:38 didn’t talk about the details of
41:40 some of the related disorders but some
41:42 of them really are treated quite
41:43 differently
41:44 and then notice note the time of day not
41:46 just how often they happen and how long
41:48 they are but know
41:49 if there’s a very specific time of day
41:51 that they happen because that actually
41:52 can be really helpful
41:53 uh for people like me coming to the
41:55 right diagnosis
41:56 and if you don’t know what you look like
41:59 in the mirror when it happens or you
42:00 you know you feel too unwell to really
42:02 pay attention take a photo
42:04 take a photo specifically of both of
42:06 your eyes during
42:07 an attack of this headache and that can
42:09 allow your doctor to see hey look there
42:11 is something
42:11 observable there because the chances are
42:14 you know just by just by random chance
42:17 that your doctor probably will not have
42:18 the opportunity to witness one of these
42:20 headaches while you’re in the office
42:21 so either a video or a picture of your
42:24 eyes
42:24 during a headache attack can be really
42:26 really helpful for people who are trying
42:27 to help
42:30 so there are lots of people who may not
42:33 have
42:34 or they may have knowledge of it of what
42:36 but they may not have knowledge of what
42:38 a what and how to treat cluster headache
42:40 with so
42:42 ideally if this is you or this is
42:44 someone you care about
42:45 try to get them someone you know and and
42:47 i would say most neurologists for
42:49 example would have at least the basic
42:50 skills and managing and diagnosing
42:52 cluster headache
42:53 and and it’s important to advocate for
42:56 even if you’re feeling better
42:57 between attacks to have somebody that
42:59 whose roster you can stay on for when
43:01 you need help
43:02 so i i think that if you contrast this
43:05 to migraine
43:06 if people have what we call episodic
43:08 migraine it’s under good control
43:10 it’s perfectly reasonable for a
43:11 neurologist to say hey you know you have
43:13 the skills you need
43:14 your family doctor has some good skills
43:16 and you can give them advice and
43:18 discharge them back to their family
43:19 doctor that’s a pretty reasonable
43:20 practice
43:21 with cluster headache being a lot less
43:23 frequent a lot more infrequent
43:25 a lot more challenging to treat and
43:28 diagnose
43:29 i do think most of the time it requires
43:31 the skills of a neurologist to treat
43:33 uh properly over the long term and you
43:36 know
43:36 keep in mind that you know these these
43:38 disorders are
43:40 wrought with suicidal thoughts and
43:41 substance abuse so if you or anyone you
43:44 know is dealing with this
43:45 please ask for help because there is
43:46 help available for this too
43:48 okay that’s about all i have
43:51 this was just an overview of a very
43:53 complicated problem that um
43:56 that i hope that i hope you guys all um
43:58 were interested in hearing about
44:00 thank you very much uh dr kingston um
44:03 and thanks again
44:04 everybody for joining in tonight i hope
44:07 you all stay
44:08 well in this crazy covered world that
44:09 we’re living in um
44:11 thank you again to you dr kingston for
44:13 joining us
44:14 and uh we’ll be in touch check our
44:16 website out regularly we are
44:18 holding um trying to hold one webinar
44:21 per month
44:22 so we have another one coming up on
44:24 february 22nd
44:25 on uh the female life cycle and migraine
44:29 with uh
44:29 dr rose giamarco so hopefully
44:33 you’ll all be able to join in on that as
44:35 well and i wish you a happy evening
44:38 take care bye
44:50 [Music]