Cluster headache – All You Need to Know

0:00 over to you dr kingston thanks so much
0:02 for for having me and and thanks to
0:04 migraine canada for
0:06 uh all the work they’ve been doing and
0:07 educating people about migraine and
0:09 other headache disorders and
0:10 specifically today for cluster headache
0:12 awareness stage for highlighting a
0:14 non-migraine headache disorder which is
0:16 which is still a very important one as i
0:18 hope i’ll uh i’ll convey to you uh just
0:22 a couple of of notes um
0:24 if you if you saw this last year the
0:26 content is not a whole lot different
0:28 there hasn’t been a great deal of update
0:30 since last year but that’s okay it’s
0:31 always a good topic to speak about
0:33 and
0:34 in terms of questions of course you know
0:36 i won’t be licensed to give any specific
0:40 medical questions that you may have
0:41 about yourself if you’re inquiring about
0:44 yourself but some general questions are
0:45 just fine and we’ll do our best to get
0:47 to as many as we can
0:50 so i have a couple of disclosures in
0:52 terms of conflicts of interest but none
0:54 of them are in direct conflict anything
0:56 that i’m going to be speaking with you
0:57 about this evening
0:59 so i want to talk first about what
1:01 cluster headache is
1:02 so we know that cluster headache is a
1:05 syndrome of one-sided headaches that are
1:08 what we call side-locked when we use the
1:10 word sidelock it means it generally only
1:13 stays on one side and does not switch to
1:15 the other side of the head
1:17 for example we talk about migraine as
1:19 being a unilateral or unilateral meaning
1:22 one-sided headache but with migraine it
1:24 quite often will change sides whereas
1:26 with cluster headache it typically
1:27 remains on the same side
1:29 it’s also associated with features that
1:31 we call autonomic features
1:33 and when i say autonomic features that’s
1:35 the part of the nervous system that
1:37 causes automatic reactions like tearing
1:40 like nasal congestion like redness of
1:42 the eye things that are beyond our own
1:44 conscious control
1:46 they have been termed suicide headaches
1:48 because of the severity of the headaches
1:49 that uh that come with cluster headache
1:52 and it’s often been described as being
1:54 the most painful condition known to
1:56 human beings
1:57 it’s generally what we call a primary
1:59 headache disorder so
2:01 as a rule headache disorders are divided
2:04 amongst other ways but into primary and
2:07 secondary headache disorders a secondary
2:09 headache disorder means there is
2:11 probably something underlying that we
2:13 can see on a test or a scan that may or
2:15 may not require treatment that uh
2:18 that is a direct cause of the headache
2:20 and the headache would not be present if
2:22 that other problem was not there a
2:24 primary headache disorder is a headache
2:27 that sort of just happens usually for
2:29 genetic reasons or reasons that we don’t
2:31 fully understand depending on the
2:32 individual headache disorder
2:34 it’s also further sub-categorized
2:37 cluster heading specifically but also
2:39 other disorders like migraine to what we
2:41 call
2:42 episodic and chronic
2:44 generally speaking an episodic
2:46 cluster headache is somebody who has
2:49 cluster headaches that meet criteria for
2:51 cluster headache that have a reprieve
2:54 for at least three months of the year
2:56 where they do not have those headaches
2:58 someone who has chronic
3:00 cluster headache does not have even a
3:02 three-month period of breaks where they
3:04 do not have headaches at all so you can
3:06 see that just by that and hearing that
3:08 that very fact that cluster headache is
3:11 by definition a more disabling form of
3:13 the disease
3:15 so there can be secondary headaches that
3:17 mimic cluster headache and that’s why
3:19 we often recommend some baseline testing
3:22 when you get a new diagnosis of cluster
3:24 headache which we don’t always do with
3:26 every other headache disorder for
3:27 example we often don’t recommend any
3:29 testing when someone has migraine
3:31 depending on the scenario
3:35 this is sort of the way that we diagnose
3:37 headache disorders using using this
3:38 guide called the international
3:40 classification of headache disorders and
3:42 i won’t go through this
3:44 criteria in excruciating detail but i’ll
3:46 explain a little bit about how we come
3:47 to this disorder so generally speaking
3:49 we say that it has to be a severe or
3:52 very severe headache that occurs on one
3:54 side of the head and there are specific
3:56 timelines that we usually adhere to in
3:59 terms of making that diagnosis and
4:00 that’s why tracking the duration of your
4:02 headache is actually really important to
4:04 actually help your doctor come to the
4:05 right diagnosis
4:06 and generally speaking there should be
4:08 at least two
4:09 autonomic symptoms that happen with that
4:11 headache on the same side as the pain
4:14 and those autonomic features can be
4:16 anywhere from
4:18 watery eyes which we call lacrimation
4:20 redness of the eye
4:22 nasal congestion or runny nose as well
4:25 eyelid
4:26 swelling and pupillary abnormalities
4:30 like a people that’s too small or too
4:31 big during the headache episode
4:34 and
4:34 the frequency with which they occur is
4:36 also an important way for us to make an
4:38 appropriate diagnosis so each individual
4:40 headache could happen as often as eight
4:42 times a day or as little as one every
4:45 other day while someone is in a cluster
4:47 headache period
4:48 and as i mentioned we do know that
4:50 episodic and cluster and chronic
4:52 cholesterol are a little bit different
4:53 and thank goodness most people with
4:55 cluster headache have episodic cluster
4:57 headache which is great because there
4:59 are also more treatment options for
5:01 episodic cluster headache as i’ll
5:02 mention
5:04 so we spoke a little bit about those
5:05 autonomic features and uh there are some
5:08 that are more common than others and
5:09 sometimes they can be a little bit more
5:11 subtle
5:12 so lac cremation or a watery eye is the
5:14 single most common feature we see with
5:16 cluster headache and about 75 percent of
5:18 people who have cluster headache will
5:20 have this during an individual attack
5:23 what we call a conjunctival injection or
5:25 a red eye occurs about 60 of the time
5:27 and then followed by a nasal congestion
5:31 there is an also an entity that we call
5:33 a horner’s syndrome and that’s
5:35 characterized by
5:36 a droopy eyelid a small pupil and a
5:39 change in the sweating pattern on one
5:40 side of the face
5:42 and there are lots of things that can
5:44 cause a horner’s syndrome that we might
5:46 have to go looking for but actually
5:48 interestingly enough
5:49 frequent attacks of cluster headache is
5:51 a reason somebody could have something
5:53 called a horner’s syndrome
5:55 and that can sometimes last in between
5:56 attacks when it’s been going on for a
5:58 very long time
6:00 interestingly unlike other headache
6:02 disorders we know that restlessness or
6:05 agitation are particularly important a
6:07 particularly important feature
6:10 in cluster headache in fact when you
6:12 when you poll people there’s only about
6:14 three percent of people who meet
6:16 criteria for cluster headache that are
6:18 actually able to sit still during an
6:20 individual attack
6:22 commonly reported are people who need to
6:23 rock back and forth
6:25 pace around the room sometimes you hear
6:27 people banging their head against the
6:28 wall crawling on the floor jumping in
6:30 the snow it’s sort of a feeling of
6:33 almost desperation that comes with
6:34 having a cluster headache episode if you
6:37 contrast that to a disorder like
6:38 migraine where people are disabled in
6:41 bed
6:42 lights off everyone tells everyone to
6:43 leave them alone it’s still a very
6:45 disabling headache disorder but the
6:47 behavior that comes with it is quite
6:48 different
6:49 and i think all of these things
6:51 just show you how
6:53 complex it is to make these diagnoses
6:55 and why it does take
6:57 a proper history from a physician to
6:59 come to the right diagnosis
7:01 and why that’s important is there’s
7:03 actually several other disorders that
7:05 look a little bit like cluster headaches
7:07 so knowing for sure about the timing how
7:10 many episodes are occurring how long
7:12 it’s been going on what are associated
7:14 features can really help us determine
7:16 whether it really is cluster headache a
7:18 related disorder or something else
7:20 entirely
7:22 so the other things that we see that
7:24 make cluster headaches so interesting
7:26 is
7:27 it’s been noted that there’s what we
7:28 call circadian periodicity which means
7:31 there seems to be a time of day where
7:33 it’s very clear that it happens each
7:34 time there’s a handful of people who
7:36 will also say that they have
7:39 like they could set their watch by the
7:40 time they’re going to get their
7:41 headaches they know exactly when it’s
7:42 going to happen often it wakes them from
7:44 sleep i’ll show you a little graph about
7:46 the most common times to actually have
7:48 an attack of cluster headache and what
7:50 we call a circanual periodicity which is
7:52 like a seasonal predilection so there
7:54 are certain seasons where
7:56 where it’s more likely to happen and in
7:58 fact we’re we’re in one now so it’s
8:01 appropriate that cluster headache
8:02 awareness day occurs in march because
8:04 the uh the spring is one of those
8:06 seasons where it’s most common in fact i
8:08 think i’ve had three patients just this
8:09 week contact my office saying that
8:11 they’ve had a recurrence of their
8:13 headache so i wasn’t terribly surprised
8:15 to hear from them this week
8:17 um many people with cluster headache
8:19 will describe a feeling of a foreign
8:20 body in their eye
8:22 like almost like there’s something stuck
8:23 in there that they can’t quite get out
8:25 during a cluster headache episode
8:27 and
8:28 when i say migraine as features so
8:31 that is a feature that we typically see
8:33 with a migraine
8:34 disorder
8:36 can occur sometimes in people with
8:38 cluster headache but often those
8:40 features are one-sided on the same side
8:42 as the pain the most common being
8:44 sensitivity to light which we call
8:46 photophobia
8:47 some studies report that sensitivity to
8:50 light on the same side of the headache
8:52 can be can occur as often as in as 90 90
8:55 of people with cluster headache
8:57 and i think there’s a couple of things
8:59 to bear in mind here and that’s that um
9:02 because
9:03 because it’s more common in men some
9:06 women who experience sensitivity to
9:09 light with cluster headache may get
9:10 misdiagnosed as having migraines
9:13 this is a an actor’s depiction of some
9:15 of the ways that people with cluster
9:17 headache have described their symptoms
9:19 on this slide here
9:21 so
9:22 i mentioned before that it’s often
9:24 striking how how much it occurs at the
9:26 exact same time of day
9:28 and there’s a few reasons for that or at
9:30 least we think there is and there may be
9:31 some genetic
9:33 underlying
9:34 causes that actually lead to that there
9:37 still is a lot of work to do on exactly
9:38 what those are but there’s been some
9:41 specific genes that have been linked to
9:43 cluster headaches that that make it a
9:44 little bit more interesting
9:46 and some of those are genes that are
9:48 also responsible for
9:51 the production of a chemical called
9:53 paycap and we know that that chemical is
9:55 one of the important drivers and other
9:57 headache disorders such as migraine
10:14 most time to actually experience an
10:16 attack of cluster headache
10:19 this is a graph demonstrating exactly
10:21 that so this was a study that was
10:23 undertaken looking at multiple
10:26 multiple questionnaires across the
10:28 across the world and finding the single
10:30 most common times to actually experience
10:31 a cluster headache and here you can see
10:33 a very clear peak at 2 a.m
10:37 in terms of the time of year
10:39 um
10:40 you know
10:41 pardon me in terms of the time of day
10:43 specifically because of a lot of them
10:45 occur at night time this can lead to
10:47 essentially a fear of going to sleep or
10:49 a fear of getting a headache and there’s
10:51 actually a term for this a fear of
10:53 getting a headache is called
10:54 cephalaldraphobia
10:56 and this can actually lead to sleep
10:58 disorders if one does not already exist
11:00 from having interrupted sleep from the
11:01 cluster headache itself
11:03 but this can lead to advanced phase
11:05 sleep disorder it can
11:07 it can lead to
11:08 psychological comorbidities like anxiety
11:11 and depression
11:12 and the reason why this happens is not
11:15 entirely clear but it may be an
11:16 effective sunlight as it seems to be a
11:19 little bit less common in equatorial
11:22 countries compared with northern and
11:23 southern countries
11:25 in terms of the time of year in north
11:27 america it tends to be more most common
11:30 in the fall in the spring
11:32 and some people will describe that it
11:34 happens twice a year sometimes once a
11:36 year and sometimes it skips years
11:38 sometimes it only happens every other
11:40 year or every two to three years i have
11:41 one person who only seems to get about
11:43 every five years
11:44 and why there’s that clear disparity
11:47 amongst different people i think is yet
11:49 to be determined
11:52 this is that same study that looked at
11:54 people across the world and the times of
11:56 year where it’s more likely to happen
11:57 this is specifically to north america
11:59 this graph but this shows a clear peak
12:02 right around now and then another peak
12:04 in in the fall specifically in october
12:06 being the most common and that’s
12:07 certainly what i observe in my clinical
12:09 practice as well
12:12 so there are other important things to
12:14 consider when we talk about cluster
12:16 headache and this may resonate with some
12:17 people who know someone or perhaps have
12:19 experienced this themselves and that’s
12:21 that it gets missed
12:22 so the average time to actually come to
12:25 a correct diagnosis from the first
12:26 symptom is about five years and only
12:29 about 21 of people actually receive the
12:31 correct diagnosis at the time they
12:33 present to the doctor
12:35 the other thing to mention is that
12:37 people can have suicidal thoughts when
12:39 they actually have a cluster headache
12:40 episode because of how severe it is in
12:42 fact about 55 percent of cluster
12:44 headache patients have contemplated
12:46 suicide at some point during a cluster
12:47 headache attack
12:49 interestingly we know alcohol can
12:50 trigger an individual attack but it
12:52 seems to only be a trigger when someone
12:55 is in their cluster headache cycle so if
12:58 you have episodic cluster headache and
13:00 it’s
13:00 march you may want to avoid alcohol
13:02 because that may actually bring on an
13:04 attack but if you’re not if you never
13:06 get a cycle let’s say in the summertime
13:08 and have and have a drink of alcohol it
13:10 may do nothing to actually trigger an
13:12 attack
13:14 and for whatever reason we we found that
13:16 beer seems to be a more potent trigger
13:18 than other forms of alcohol whereas you
13:21 know historically you hear that people
13:23 who have a lot of migraine may avoid
13:24 things like wine
13:27 about 75 of all attacks are less than 60
13:30 minutes and that’s tricky you know if
13:32 you think about the kinds of treatments
13:33 that we use for any medical condition
13:35 any pain condition most of the treatment
13:38 options that we have are oral oral
13:40 treatments take time to work because
13:42 they have to be ingested they have to be
13:44 dissolved they have to be digested they
13:46 have to get into your bloodstream and
13:47 then they have to get to the proper
13:49 concentration in your blood to actually
13:50 become effective and often that takes an
13:53 hour in and of itself so treating
13:55 cluster headache with oral medications
13:57 on an as needed basis often really
13:59 doesn’t work simply because of the
14:00 duration of the individual attack and
14:03 only about 15 of people who have cluster
14:06 headache will ever experience a headache
14:07 on the opposite side of their head so
14:09 the overwhelming majority of people who
14:10 have cluster headache really only ever
14:12 have it on one
14:14 side so we know that about four in a
14:18 thousand people in the world have
14:20 cluster headaches so it’s you know you
14:22 may hear about it being referred to as a
14:24 rare a rare disorder but the truth is it
14:27 isn’t um you know other diseases that
14:29 have a similar frequency are things like
14:31 multiple sclerosis and parkinson’s
14:33 disease and if you look you know across
14:35 the world across whatever city you live
14:37 in you can probably find a pretty easy
14:40 access to a multiple sclerosis clinic or
14:42 a movement disorders clinic that treats
14:43 parkinson’s disease but there really
14:45 aren’t very many specialized really any
14:47 specialized clinics that are dedicated
14:50 specifically to cluster headache and
14:52 there are reasons for that too that i
14:54 that i will go over
14:55 in terms of why people get missed
14:58 so we know that it’s more common in
15:01 males compared to females we think
15:04 but you know there’s there’s other
15:06 issues at play here there may be a lot
15:08 of misdiagnoses here it may be that
15:10 women present a little bit differently
15:11 than men so i think we’re learning a
15:13 little bit more about the epidemiology
15:15 of cluster headache from that
15:16 perspective as well
15:18 it rarely happens in pediatric
15:19 populations but when it does
15:22 um the
15:37 be quite a similar ratio from males to
15:39 females but it’s that sort of
15:41 peak productive years between you know
15:44 the ages of 20 and 50 where it seems to
15:47 be a disparity and there are more males
15:48 affected
15:50 because of late diagnoses uh patients
15:53 might feel normal for long periods of
15:56 time in between so if for example i
15:58 mentioned before that some people may go
16:00 a year in between attacks or maybe even
16:03 two years between attacks
16:05 and because of this it’s really hard to
16:07 get data on this disease it’s really
16:10 hard to capture
16:11 someone who might have six weeks of the
16:13 year where they’re affected get them
16:16 they have to you know
16:17 track the baseline number of headaches
16:19 that they have before they start a
16:20 treatment before a study gets enrolled
16:23 and then look to see if a medication
16:24 makes a difference that’s really hard to
16:26 do when you have a thing that can last
16:29 for such a brief period of time
16:31 and one that often doesn’t make it to
16:33 the right people for the proper
16:35 diagnosis so that’s why there’s a lack
16:36 of of evidence and that’s why there’s a
16:38 lack of studies to really show
16:40 why
16:42 what things work and why they work
16:46 so
16:47 common misdiagnosis so the single most
16:49 common thing that someone would be
16:51 misdiagnosed with would be migraine
16:54 um sinusitis believe it or not and
16:56 that’s probably to do with the nasal
16:58 symptoms that can come along with
17:14 always raise an eyebrow when i hear the
17:16 word sinus headache because it probably
17:18 isn’t real in most people and it’s
17:19 probably either migraine or cluster
17:20 headache depending on how they’re
17:22 presenting
17:23 and believe it or not dental issues
17:25 sometimes get um
17:27 sometimes
17:29 someone may be misdiagnosed as having
17:31 dental issues instead of cluster
17:33 headaches that one i find a little
17:34 harder to believe but it does happen
17:37 so here are some issues as to why people
17:38 get missed
17:40 so first of all i mentioned that the
17:41 light sensitivity that can occur may be
17:43 only one-sided but it can lead to an
17:45 inappropriate diagnosis of migraine the
17:48 autonomic symptoms that i talk to you
17:49 about may be mistaken for allergy
17:51 symptoms sinus symptoms and we think
17:54 that women may have um
17:56 slightly unusual attacks in that their
17:58 attacks may be a bit longer than our
18:00 standard set of criteria
18:02 uh compared with men and they may have
18:05 they may be more likely to have features
18:06 that are um that have migraine uh that
18:09 may mistake them for having migraine uh
18:12 compared with men and that may also be
18:15 because
18:16 migraine is such a common disorder in
18:18 the general population with you know
18:21 one in seven to one in eight people
18:23 worldwide having migraine that there are
18:25 definitely people out there that have
18:27 both conditions
18:28 and that can lead to a very difficult
18:30 a difficult way to kind of
18:46 factors physician factors so the word
18:50 cluster
18:51 can be misleading so for example there
18:54 are lots of patients who have migraine
18:56 who believe they have cluster headache
18:57 because their headaches tend to group
18:59 together or occur on multiple days in
19:01 succession
19:02 and we’ll often hear the word well i
19:04 have cluster migraines when that really
19:06 is not a diagnosis it’s migraine that’s
19:09 occurring on multiple back-to-back days
19:11 but that’s not a clustered migraine
19:15 and then as i mentioned before some
19:16 people just truly have both diagnoses
19:19 [Music]
19:20 so why does cluster headache happen
19:23 so
19:24 we know that it occurs probably on a
19:26 spectrum with other disorders that are
19:28 similar and collectively those those
19:30 groups of disorders are called
19:32 trigeminal autonomic cephalologists we
19:35 call them tax for short and there are
19:38 several of these there’s four that are
19:40 sort of well described and there’s some
19:42 that are rare that may or may not truly
19:44 exist as individual entities but they
19:47 probably represent a spectrum of disease
19:50 and where they differ is between
19:54 the timing of the individual headache
19:56 the duration of the individual headache
19:58 and do they have periods of retrieve in
20:00 between like what’s happening between
20:01 the individual headache is the headache
20:03 truly gone or is there a baseline
20:05 headache there that never quite goes
20:06 away so those are all things that we
20:08 really need to consider when we’re
20:09 coming to a proper diagnosis
20:14 so the reason why it happens is a little
20:16 bit poorly understood it’s likely due to
20:19 an interplay between
20:21 several systems in the brain
20:36 from the high cervical spine and the
20:39 trigeminal nerve and we know that the
20:41 thalamus and hypothalamus
20:44 almost certainly have an important part
20:46 in the generation of
20:48 of cluster headache because of the
20:50 autonomic symptoms that get experienced
20:52 and probably because of the
20:54 the timing of day the seasonal
20:56 predilection is probably linked to the
20:58 hypothalamus as well
21:01 the relationship between these is called
21:03 the trigeminal autonomic reflex
21:07 so
21:08 is cluster headache always a primary
21:10 headache disorder
21:11 i will just put a caveat in front of
21:13 this and say that
21:14 if someone meets perfect criteria there
21:17 are no red flags nothing is happening
21:20 otherwise i always i always put a little
21:22 bug in someone’s ear saying
21:24 you know
21:25 we sometimes investigate to look for
21:27 certain things but most of the time we
21:29 don’t find something
21:30 and
21:31 to make a diagnosis of a headache
21:33 disorder it really is contingent upon
21:35 the history it’s very rare that we find
21:37 a test
21:38 that tells us something so the truth is
21:40 there are no tests for headache you
21:43 can’t make a diagnosis of headache with
21:44 a test you can confirm certain diagnoses
21:47 with testing depending on the individual
21:49 headache disorder but it really is
21:52 something we we diagnose based on based
21:54 on talking to somebody
21:56 and examining somebody
21:58 so most cases
22:14 uh certain blood clotting problems like
22:16 venous sinus thrombosis they have been
22:17 reported it’s very rare for that to be a
22:19 cause and if it’s been going on for
22:21 years and years and years something like
22:22 that is almost never the cause really
22:24 what we look for for causes like this if
22:26 someone has a new brand new onset of
22:29 symptoms that look just like this
22:32 some people have a small little lesion
22:34 in their pituitary gland it’s usually a
22:36 benign lesion but sometimes those
22:39 lesions can actually
22:40 secrete hormones and if there is some
22:43 hormones being secreted sometimes if we
22:45 treat the hormonal imbalances the
22:47 headaches can actually improve so that’s
22:48 one thing we definitely go looking for
22:50 in people who have cluster headaches and
22:52 there is even reports of people having
22:54 headaches similar to cluster headache
22:56 after a severe head injury but that’s
22:58 quite rare
23:00 so we know that
23:02 the amount of people who have a
23:03 pituitary lesion like i mentioned it’s
23:05 not exactly clear and it’s not clear
23:08 whether it’s incidental or whether it’s
23:09 really the cause there are certainly
23:11 lots of people across the world who get
23:14 imaged for other reasons and we find
23:16 they have a small little lesion in their
23:17 pituitary gland most the time it amounts
23:20 to absolutely nothing and those people
23:21 may not even have headache so
23:24 why in some people could it be related
23:26 and why is it unrelated in others i
23:27 think that’s something that’s yet to be
23:29 determined and there are lots of things
23:31 you can find in someone’s pituitary and
23:33 which ones are potentially causative and
23:35 which ones are completely bystanders i
23:37 think is something that we still
23:38 have to do a lot of work on to figure
23:40 out
23:57 headache or older at the age of onset
23:59 they often have an abnormal examination
24:01 so there’s something that will kill your
24:03 doctor when they’re examining you to say
24:04 that’s not right we need to do some
24:06 testing
24:07 sometimes the actual characteristics of
24:09 the headache don’t fully match our
24:10 criteria so there’s something that’s
24:12 just off when you when you’re listening
24:14 to someone’s story and then we may see
24:16 something abnormal on their systemic
24:18 examination like we may see actual
24:21 things when we examine them that point
24:22 us towards hormonal imbalances as i
24:25 mentioned before
24:26 um out of all of the 63 cases in this
24:29 one one particular study that i’m
24:31 referring to about 22 of them were
24:33 attributable to a pituitary problem
24:36 and most of those were due to a small uh
24:38 growth on the pituitary gland
24:41 the good news is when we find them and
24:42 if they are
24:44 we believe they’re the cause sometimes
24:45 treating them usually with medication if
24:48 it is one that causes hormones can
24:49 actually help
24:51 it’s rare that surgery to actually
24:53 remove the i’m sorry for the feline
24:54 interruption behind me this may not be
24:56 the only time it occurs
24:59 um we don’t know exactly why uh
25:02 pituitary lesions or pituitary
25:04 disruptions can cause cluster headache
25:06 but we think it probably has something
25:08 to do with the interruption between the
25:10 hypothy hypothalamic tracts and their
25:13 relationship to the trigeminal nerve
25:15 that i mentioned before so it introduced
25:17 that trigeminal autonomic reflex
25:20 and when we do find something it’s
25:22 usually on the same side as the pain
25:25 so if you look at across the board if
25:28 you’re going to let’s say an
25:29 endocrinology clinic or a neurosurgery
25:31 clinic and you look at everyone who has
25:33 some kind of pituitary problem or
25:35 pituitary growth about 10 of them will
25:38 have
25:39 attack like headache whether it meets
25:41 full criteria for cluster headache or
25:43 not i think is yet to be determined but
25:44 that was a study back in 2005
25:47 whether they were severe enough to
25:48 require treatment or is something that’s
25:50 unknown
25:53 so
25:53 this is my recommendation you know
25:56 unfortunately there are not great
25:57 guidelines on exactly what we should be
26:00 testing and when we should be testing it
26:02 this is something that i’m actually
26:03 working on with a couple of colleagues
26:04 coming
26:05 coming to make a canadian
26:08 canadian guidelines on evaluation and
26:11 testing for cluster headaches so stay
26:12 tuned hopefully that will be available
26:13 in the next couple years um in my
26:16 opinion all people with a new diagnosis
26:19 of cluster headaches should have some
26:20 kind of brain imaging usually looking at
26:22 the pituitary gland and in the right
26:24 scenario looking at their blood vessels
26:26 can be important too
26:28 considering uh
26:30 consider hormonal testing as i mentioned
26:32 specifically things like prolactin which
26:34 would be the most most important one and
26:37 sometimes testosterone particularly in
26:39 male patients
26:40 and a sleep study and that can be
26:42 important for a couple of reasons so
26:44 we know that
27:06 out of that when they have episodic
27:08 cluster headache
27:10 and so if someone is getting a sleep
27:12 study
27:13 i think my connection is just unstable
27:15 here
27:16 sorry if i timed out there for a second
27:18 so if someone is getting a sleep study
27:20 it’s actually more helpful for them to
27:22 have their sleep study while they’re in
27:24 a cluster headache cycle
27:27 and interestingly enough when someone
27:29 does have sleep apnea and cluster
27:31 headache their symptoms often improve
27:33 once that sleep apnea is treated and
27:36 sleep apnea in and of itself is not
27:37 denying we know that sleep apnea when
27:40 untreated is a risk factor for high
27:42 blood pressure heart disease and stroke
27:44 so actually getting that looked at
28:07 symptoms
28:09 most people actually pretty well all
28:11 people need some kind of abortive or
28:13 what we call rescue treatment that is to
28:14 say a treatment for each individual
28:16 headache when it happens to kind of get
28:18 your day back when it occurs
28:20 and then sometimes we use transitional
28:22 treatment that’s more for people with
28:23 episodic cluster headache that we may
28:25 use transiently for a few weeks whereas
28:28 preventive treatment really refers to
28:30 something that’s taken for months or
28:32 longer
28:34 so we as i mentioned before because of
28:36 the nature of cluster headache we don’t
28:38 have very many large scale studies the
28:40 evidence for prevention is largely
28:56 they can lead to what we call medication
28:58 overuse headache and they can lead to
29:00 other medical problems some of these
29:02 medications that are used as rescue
29:03 treatments are not always entirely
29:04 benign
29:27 with your family doctor your family
29:29 doctor says
29:30 i’m not or you know they may they may be
29:32 able to about 20 of the time i mentioned
29:34 they get a diagnosis correct from the
29:35 first time but then they say hmm i don’t
29:38 know what this is i’m going to send you
29:39 to the neurologist then by the time you
29:41 get to your neurologist the headache is
29:43 over with
29:44 some people just skip the appointment
29:45 altogether because they think well i’m
29:46 better and sometimes they get to the
29:48 neurologist and say well you don’t have
29:49 the headaches anymore so you’re okay
29:51 and then that leads to this cycle of
29:53 this recurring every time the headache
29:55 comes back delaying diagnosis quite
29:57 significantly
30:01 so
30:01 the abortive or rescue treatment that i
30:04 mentioned oral treatments are pretty
30:06 limited for the reasons that i stated
30:08 about improper absorption in the timing
30:10 that people need
30:12 nasal treatments can work and
30:14 inhalational treatments can work so
30:16 specifically oxygen oxygen has the
30:19 highest level of evidence for treating
30:20 something in the moment
30:22 it has to be delivered properly so it
30:24 has to be by face mask if there’s holes
30:26 in the mask they should be plugged and
30:27 it has to be delivered at an adequate
30:29 rate of at least 12 to 15 liters per
30:32 minute there is some evidence that even
30:33 higher rates can help certain people who
30:35 aren’t responding to that to the rate of
30:37 12 to 15 but finding those specific
30:40 attachments for oxygen containers can be
30:42 tricky but about 80 of people with
30:44 cluster headache will have some relief
30:46 within 15 minutes if the oxygen is
30:48 delivered properly
30:50 intranasal treatments there’s something
30:52 called zolmatryptan that can be used it
30:54 has high quality evidence the same thing
30:56 with intranasal sumatriptan a little bit
30:58 less evidence but still can be effective
31:00 sometimes intranasal lidocaine can be
31:03 used and then we know that injectable
31:05 treatments like sumatriptan can be quite
31:08 effective but unfortunately using these
31:10 kinds of treatments every single day for
31:12 weeks and weeks or months and months at
31:14 a time is simply not safe
31:17 the issues with oxygen even though it
31:19 probably is our safest and sometimes
31:20 most effective treatment is that it’s
31:23 hard to carry around it’s often not
31:25 covered by insurance
31:26 and sometimes uh
31:29 it may be used improperly may not be
31:31 getting the right rates sometimes they
31:32 don’t understand the kind of valves that
31:34 you need to actually have the proper
31:36 flow and of course uh
31:38 in general non-oral medications like
31:40 nasal sprays injectables same reason
31:43 they’re hard to carry around with you
31:44 they’re hard to have at work and they’re
31:46 often not as preferred the truth is
31:48 people want oral treatments sometimes
31:50 you know
31:51 ideally i wish we had them i wish we had
31:53 more effective world treatments than we
31:54 do
31:55 transitional treatments so ones you used
31:57 for episodic cluster headache you use
31:59 them for you know as soon as the
32:01 headache starts take them for a few
32:02 weeks until it settles down and then you
32:04 may be able to come off of it sometimes
32:06 oral steroids can work for that there’s
32:08 some limited evidence for oral tryptane
32:10 medications but my experience has been
32:12 they don’t work all that great
32:13 and then some poor evidence for some iv
32:16 treatments
32:17 but one of the treatments that seems to
32:19 be effective is occipital nerve blocks
32:21 with steroid or sub-occipital steroid
32:24 injections is the proper term that were
32:26 used in the study
32:28 and delivering those at the onset of
32:30 that cluster period can actually be
32:32 quite helpful
32:33 and what’s exciting is
32:35 for the first time in 30 years there’s a
32:37 new approved treatment specifically for
32:39 cluster headache and that is a
32:41 medication called galcanizumab that was
32:43 originally designed as a migraine
32:45 treatment but at higher doses can
32:47 actually help episodic cluster headache
32:49 unfortunately the trial for chronic
32:52 cluster headache with this medication
32:53 was not successful
32:55 when it comes to preventive treatment
32:57 some of these are messy um we know that
32:59 um
33:01 verapamil can can work you know for some
33:03 people um
33:05 poorly tolerated a lot of cases lithium
33:07 can work for some people and it’s
33:08 actually worked for some of my most most
33:11 not not they’re not problematic people
33:13 but uh people with the most problematic
33:15 headaches that have not responded to a
33:17 whole lot sometimes lithium um has been
33:20 a real savior but it’s but it’s messy
33:22 it’s poorly tolerated people don’t like
33:23 to be on it
33:24 melatonin is is good when it works it’s
33:28 high dose melatonin sometimes can be
33:29 appropriate as well
33:31 and at least it’s well tolerated and
33:32 quite safe there are lots of others that
33:35 get used in clinical practice but there
33:36 isn’t as much evidence to support their
33:38 use it doesn’t mean it won’t work
33:40 necessarily it just means there’s not
33:42 always the same level of study
33:44 in terms of other options so i have this
33:47 i have non-invasive vagal nerve
33:48 stimulation listed as a preventive
33:50 treatment it’s really more of an acute
33:51 treatment so this is a bit misplaced in
33:53 the order um but it is it is a
33:56 non-medicinal approach so
33:58 what it is is it’s a stimulator to
34:00 what’s called the vagus nerve that you
34:02 actually stimulate on your neck during a
34:03 cluster headache attack and it has been
34:05 shown to be effective for episodic
34:07 cluster headache when it was compared
34:09 with a sham treatment so essentially a
34:11 placebo um instead of the actual and
34:14 instead of the actual stimulant
34:15 stimulator
34:17 and then there are some surgical options
34:19 that have been studied however the
34:21 results are not always that fantastic
34:23 the one that seems to have the most
34:25 evidence slash safety profile would be
34:28 something called occipital nerve
34:29 stimulation so some people may be
34:31 candidates for this it should any
34:33 surgical opinion any surgical option
34:35 should always be the last option after
34:38 things have failed because they often
34:39 have less support by the evidence
34:42 there’s a lot more risks associated with
34:44 it a lot more complications that can
34:45 happen and then some very invasive
34:48 surgical
34:49 um options that are almost never
34:51 recommended
34:52 there um there was uh some evidence
34:54 mounting for um a stimulator in the nose
34:57 for something called the spg ganglion in
34:59 europe um which showed some promise but
35:02 unfortunately the company that was
35:03 making the stimulator is no longer
35:06 operational so the trial had to be
35:07 halted so hopefully one day that we’ll
35:10 start up again and we’ll learn a little
35:11 bit more about it
35:12 in terms of things that are coming up
35:15 we know that there are there is some
35:17 mounting evidence for certain
35:18 psychedelic substances and this is
35:20 certainly something i get asked about a
35:22 lot so psilocybin containing mushrooms
35:24 or or extracts from those mushrooms uh
35:27 there’s there’s some evidence in terms
35:29 of case series and case reports and self
35:31 reports from people who have cluster
35:33 headache who suggest that it’s that it
35:35 can be effective
35:36 um and the same thing with um a
35:39 substance that’s a little bit like lsd
35:41 but not exactly like lsd usually the
35:43 strategy is what we call micro dosing
35:46 where you take it where to the point
35:48 where you actually don’t get the
35:49 hallucinogenic
35:50 properties from it there are some
35:52 studies that are ongoing for this of
35:54 course this is not something that can be
35:56 readily prescribed and it’s not
35:58 something that we have a full safety
35:59 profile on it on yet so it’s not
36:01 something that’s been widely
36:04 recommended as of yet but it may be in
36:07 the future and i think it does show some
36:08 promise
36:10 so specifically there’s been reports of
36:13 nearly 500 patients in in support groups
36:15 that suggest that it’s
36:17 people purport it to be more effective
36:19 than standard treatments
36:21 so i think that’s something that we need
36:22 to take seriously and all the more
36:24 reason why we really need more studies
36:26 to support to really find out whether or
36:28 not it’s useful but we really haven’t
36:30 seen the same
36:32 kinds of
36:33 reports of efficacy where things like
36:35 cannabinoids like cbd and thc and
36:38 generally those are not recommended for
36:40 use for cluster headache
36:42 unfortunately we have also seen that
36:44 people with cluster headaches seem to be
36:45 at risk for um for drug use compared
36:49 with people who don’t have cluster
36:50 headache and the reason for that is
36:52 unclear
36:53 is it a coping mechanism because of the
36:55 severe headaches they have or is there
36:57 some sort of perceived benefit that
36:58 they’re deriving from illicit drug use
37:01 or is there just something inherent that
37:02 puts them at a higher risk for abuse
37:05 independence and i think that’s another
37:06 thing that is is a really important
37:08 thing you really need to learn more
37:09 about
37:10 so
37:12 what should people ask for when they
37:13 have cluster headaches so um first of
37:16 all recognize that things can be
37:17 cyclical so it’s important that um
37:20 keeping appointments even if you feel
37:22 well to talk about what happened so that
37:24 a proper diagnosis can be met
37:27 making sure that you’re taking note of
37:28 how long attacks are and how often they
37:31 occur
37:32 find out try to figure out what time of
37:35 day they occur
37:36 and if there is some clear patterns to
37:38 that
37:39 and then if they wake you up from sleep
37:41 and if you’re not sure if you have these
37:43 autonomic symptoms even taking a photo
37:45 of your eyes when you’re at
37:47 the peak pain to see if they look
37:49 different can actually be quite helpful
37:51 for your doctor
37:53 so
37:55 there are lots of people who have
37:57 skills and knowledge at treating
37:59 migraine for example many primary care
38:01 doctors are very very excellent at
38:02 treating migraine but primary care
38:04 doctors have simply less exposure to
38:06 cluster headaches so they may not be
38:07 fully aware
38:08 um so ideally you want to find someone
38:10 who’s somewhat of a headache specialist
38:12 or at least a very at least a
38:13 neurologist who has some experience with
38:15 cluster headache to actually make the
38:16 proper diagnosis um if someone is
38:19 struggling with suicidal thoughts
38:20 substance abuse it’s always important to
38:22 get help whether they have cluster
38:24 headache or not of course but that’s an
38:26 important thing to make sure you you
38:28 tell people if that’s what you’re
38:29 dealing with
38:31 so
38:32 with that said
38:35 i’m done with my content and i think we
38:37 have about 10 minutes for questions
38:39 so that was a lot of information i just
38:41 sort of
38:42 peppered at you