Facebook Live: Cluster Headaches with Dr. Deborah Friedman

hi it's Kristen here at UT Southwestern Medical Center thank you for joining us today for our Facebook live on cluster headaches today we are you talking with dr. dr. Friedman who is chief of the division of headache medicine and is the founding director of our headache and facial pain program dr. Friedman is also one of a handful of physicians with special expertise in evaluating including entreating conditions that overlap the fields of headache medicine and neuro-ophthalmology so before we get started don't forget as normal you want to make sure that you like and share the conversation if you hear things that you think are fascinating make sure you get that Wow button and then also be sure to write your questions in the comment section of the field we will take as many as we can get you and we also want to thank the National headache foundation for sharing the chat and letting their followers know about it so we're gonna go ahead and get started on a free bed thank you for joining us again very welcome so you know last time we talked about migraines this time we're talking about cluster headache what is the difference between the two there is actually a huge difference between the two and a lot of people mistakenly think that when they have a lot of migraines back-to-back and more a lot of any other kind of headache back-to-backs like several days in a row that that means it's a cluster headache but not true cluster headache is its own individual very special kind of headache so cluster headaches generally occur more commonly in men than women mm-hmm it's about twice as common in men than in women although women certainly do get them and we can talk about that later if you want and they can start at any age so children can get them people can start getting cluster headaches in their 90s even so they can occur anytime throughout life the headache itself is one of the most severe and excruciating types of pain known to humankind and so for many people and for most people the pain is usually centered around one I usually it's on the same side of the head every time the pain comes on suddenly it Peaks within seconds maybe minutes to worse than ten out of ten in severity it is horrendous excruciating pain people describe it like somebody's sticking a knife in my eye somebody's sticking a hot poker in my eye somebody's drilling into my eye and it's usually centered somewhere behind the eye and the hallmark of cluster headache is that it's accompanied by where called trigeminal autonomic symptoms so these are symptoms that come from the nervous system called the parasympathetic and the sympathetic nervous systems so in order to have a diagnosis you should have at least one of the following associated with the horrible pain so on the same side as the pain a droopy eyelid a small pupil bloodshot eye tearing from the eye and this is not just tearing because I'm crying it's uncontrollable tearing from the eye either a stuffy nose or a runny nose you can have facial flushing some people have fullness in the ear and it's these autonomic symptoms that we really like to hear about and unlike migraine people with cluster headache tend to get restlessness and agitation which i think is sort of an understatement but migraine patients generally like to lie down in a dark quiet room don't bother me right right cluster patients try to distract themselves from the pain and it's actually part of the headache so they will often get up and pace they'll bang their head against the wall they have patients that have like slammed other body parts against concrete walls and bruise themselves I have patients that dig their fingernails into their palms of their hands to the point where they're bleeding but but whatever the severity of the self-inflicted distraction people distract themselves the headaches themselves are not as long as migraine they last between 15 minutes and three hours but they can occur numerous times a day so they're called cluster because they come in clusters right so they can occur anywhere from every other day up to eight times a day they often wake people up from sleep at a very specific time during the night so they're characterized by what we call circadian periodicity meaning that throughout the day for many people they tend to occur at certain specific times they're like clockwork predictable they often also have what is called circ annual periodicity so there are two types of cluster headache what is called episodic and one is called chronic right we're going to talk about that the episodic type is the most common about 80 percent of people have episodic cluster headache which means that they get these bouts of cluster headache that go on for several weeks sometimes several months but then a headaches go away and they resurface again at some point down the line which is often unpredictable but for many people it is predictable so there may be like a certain month of the year that they tend to occur a lot of times I'm glad we're doing this now because the most common times they occur in fall in spring often really time when we reset the clock for daylight savings time hmm so that's episodic cluster the only thing worse in the cluster headache world is chronic cluster so these are people that basically never get a break and sometimes they start with episodic cluster and then it kind of evolved into chronic cluster but some people start with cluster headaches and they just never go away or if they get a break it's less than a month within a year's period of time and as you can imagine this is a horrible horrible debilitating disabling condition to have makes migraine look like fun and migrants no fun the cluster headache is horrible so we have a meet a lot of comments leading up to this people we're talking about you know this caused my and that caused my I mean what are that what are the triggers that are known well as far as the cause it's like kind of like migraine that we really don't know exactly the cost occasionally with cluster headache we'll find something structural in the brain so sometimes we'll find a tumor usually it's near the pituitary gland sometimes we find a problem that's in the back part of the brain called the brain stem but most people with cluster have a totally normal MRI scan of the brain correct the most common and the most well accepted triggers for cluster headache besides the period of the year the time of the year and we don't know why either is our alcohol which is a pretty reliable trigger in most cluster headache patients and nitroglycerin which you know we don't take nitroglycerine that's right but when we do experiments of cluster headache and we try to induce it in people who like to do functional imaging they give them nitroglycerin now that said some people with cluster headache will report triggers similar to those of migraine so some people will have food triggers and hunger and things like that but usually it's it just comes out of the clear blue sky it's got a mind of its own oh my gosh so we're starting to get some questions in and definitely now's a great time to start setting those questions in we've got one here from Lori that she says are there any preventative measures that can be taken to block the onset of it are you kind of just you got to deal with it as far as preventive treatment there are act there's actually no evidence that taking a preventive medication will prevent the belt from starting and I do have patients the most common preventive medication wheezes verapamil which is marketed for high blood pressure very high doses of Arapahoe much higher than we would ever ever use for patients who have high blood pressure which can sometimes cause problems that we have to deal with but there's no evidence of taking verapamil in between bouts will prevent the belt from occurring although some people are afraid to get off of it and I understand why there are preventive medications that we use when people start their cluster Abell mm-hmm so what are thought you know once it's already started are there ways to lessen perhaps the jury I think the duration or the intensity right so the acute treatment of the headache itself so people get it I think they want to take something the most commonly news treatments are either the triptans like sumatriptan so much of 10 sometimes rice and trip 10 remember these are headaches that come on almost instantaneously so we own it we want to use medications to get in the system very quickly correct and taking oral medications is usually not the way to go because by the time they get absorbed and they get circulated to the blood stream you know someone's been suffering for 30 minutes so we tend to use injectibles nasal preparations or very fast-acting oral triptans okay the other kind of tried-and-true acute treatment is oxygen very high flow oxygen it's administered by a non-rebreather mask which is the mess that drops down from the airplane when they're having pressures goes out right and many people with cluster headache find that if they inhale high flow of oxygen within about 10 or 15 minutes that's helpful doesn't work for everybody but it often does yeah that's interesting I read about that somewhere and so what is the oxygen do I mean what does that provide that's something else wouldn't do we know it's not really clear I mean we know that oxygen constricts blood vessels there's a lot more cluster headache than just constricting blood vessels of why it works but the the science of why it works is not that well understood it was actually discovered by a headache specialist dr. Kudrow who had cluster headache of course why would you know what to go back a minute you were talking a little bit earlier about men and women yeah and what is what is the difference between men and women you mentioned that men get it more often right but there's a reason okay it is more common in men and it used to be that they said it was you know middle-aged male smokers and a lot of people who get cluster headache are smokers it's not certain what is the absolute connection of behind that but the problem is cluster headache tends to be misdiagnosed a lot and it's the average duration between the time people get cluster headache and the time they're diagnosed is three years but I've seen people who have had cluster headache for twenty five years and they've never been accurately diagnosed many of these patients are women because again there's this kind of folklore out there that women don't really get cluster headache and they certainly do and many people with cluster headache I think in particular women with cluster headache tend to have migraine features with their cluster headache so they may have sensitivity to light and noise they may have nausea and vomiting you can have all those things with cluster headache but they're not required for the diagnosis of cluster headache and I think it throws people off when they have a lot of migraine symptoms it's also not that unusual for people to have both and I have plenty of people in my practice again predominantly women who started out with migraine and then later on in life they develop very typical cluster headaches and some people have both Wow so you've got you've got some more questions coming in this one is from Emily so Emily asks could cluster headaches result from a concussion actually Emily that's a great question and it is certainly possible to have post-traumatic cluster headache we see it sometimes in our people that have served in the military who have had head injuries and having a having a traumatic head injury can produce cluster headache wow that's good question we've got another one here from misty and you addressed this a little bit of misty says are these bilateral or unilateral they are unilateral headaches and during for people who have a episodic cluster headache during the bout it's always on the same side sometimes it switches sides you know the next bout very much it tends to be almost exclusively on one side of the head the same side every time okay Susanna asked a very similar question she said are they always on the same side and yes yes during about yes okay so is it typical that if somebody about on one side that they'll always have it on that side you mentioned they could every so often it'll shift sides for some people but most people it pretty much likes one side better than the other it just sounds terrible it's creepy yeah like anybody out those who never had a cluster headache go on youtube and watch a video of what it's like it's really an eye-opener so what so people that have cluster headaches what kind of treatments are available what can what can they do now okay so we kind of talked a little bit about symptomatic treatment of cluster right so there are sort of three phases of cluster treatment the first is symptomatic or acute treatment then there's transitional treatment and then there's preventive treatment so the transitional treatment is to try to sort of slow the headaches down while we're waiting for the preventive treatment to kick in and the major transitional treatments are steroids corticosteroids like prednisone and nerve blocks okay operator occipital nerve blocks usually they're done with a little bit of corticosteroid it sounds strange because the great occipital nerves on the back of the head and the headaches usually in the front by the when the headache can radiate to the back it can radiate into the jaw into the teeth into the neck but occipital nerve blocks seem to work well and then there's another kind of block called the speedo paletine ganglion block okay so the speedo paletine ganglion and they have to bring my friend the skull out don't do pleased to show you but it's basically lives right back behind the sinus so looking at mr. skull it's gonna be right back behind that bond over there mr. skull maybe it was miss Cole I don't know that but whatever it was and so the speed of counting ganglion it's like a relay station preparing for various nerves to come together that's what Anglian is so the nerves from the parasympathetic nervous system nerves from the sympathetic nervous system and then the part of the trigeminal nerve the part that supplies the cheek area they all kind of come to they're in this one little massive tangle of nerds comes fina paletine ganglion and we caught the SPG for short because it's just too long to say so you know counting ganglion and we know that the SPG has a huge role in cluster headache and so it used to be that the only way we could block the subpoena pal teen gang win was for a radiologist or an anesthesiologist to get a great big old harpoon needle and under for us to be go through the face but we can actually access the screen of Palatine ganglion through the nose so there are a couple of catheters that have been developed that go up the nose and dump a bunch of lidocaine into the side of the nasal cavity and it kind of drips back into the sphenoid paletine ganglion area and many patients will get very good relief with that sometimes we have to repeat them but often it's very helpful so as will they get relief for a couple months or is there is there something actually stops the bout Wow and we're lucky sometimes we have to repeat it sometimes they'll get you know a week or two worth of relief which is a big deal when you're going through this absolutely and then the third part of the treatment is called preventive treatment so again verapamil is probably the number one it has the best evidence for it but there are other medications that we use for example lithium although lithium has been used for a long time it's a difficult drug to take and has a lot of side effects it has a lot of drug interactions it requires a lot of monitoring so I'd say most of us probably all gonna live the illness or you know number one and number two choice anymore but gabapentin can be used to pyramid valproate some of the drugs we use for migraine prevention melatonin can sometimes be helpful what else memantine there's not a lot of evidence but there's some anecdotal experience with memantine lamotrigine can sometimes be helpful and you know then or we have some new things on her new devices it just came out talk about this me together the next question yeah so you have another question this one is from Shelby so she says I'm so glad I found this we're glad you found it - Shelby she says I was in a car accident two years ago and I've been getting headaches I'm just getting over one who's lasted two days I'm showing signs which are symptoms of migraines could this be a cluster headache if the headache itself lasted for two days Shelby chances are it's not cluster because the intense pain of cluster headache usually does not last more than for about three hours so probably it is migraine and you can get autonomic symptoms with migraine - they're not exclusive to cluster so the tearing and the runny nose and all that kind of stuff you can have that with migraine okay good question we've got another one here can cluster headaches cause permanent damage to your eyes or your nervous system nothing I'm aware of okay one good thing maybe to your psychological system but okay seriously yeah good question so let's see we've got one here from Abby so Abby says sorry if this was already asked but what are the main symptoms of cluster headaches yeah I think we really won't do that so we did sorry for purposes of time yes about getting good at the very beginning late chat sorry we've gone from Susanna Susanna says could seizures and cluster headaches be related I've never seen that question before I haven't either I actually have a patient that has headaches that are kind of similar to cluster I wouldn't say they're necessary cluster and they trigger him to have what look like seizures but in general there's not a huge association between seizure and cluster there is an association between seizure and migrate between epilepsy and migraine that's pretty well-established okay it's an interesting question they keep coming and keep sending them in now we've got one from Mars he says do you see patients with migraine who pace my pace around the house he says sometimes my pain is so great I can't lay down so he's up wandering around but they resemble the migraine phenotype type he says he has symptoms of migraine that resemble the symptoms described for cluster but he said my prodrome and post sometimes have a hyperactivity component to them how do you differentiate the two disorders that's a lot of information there that is a lot of information I think maybe first have you seen you see patients with migraine who paced I have but it's unusual right and it always makes me wonder if there's really some underlying little cluster component lingering in there right if you know there's no official diagnosis for people who have migraine with cluster features I mean I don't know what else to call it because that's what I cut that's what I end up calling it but there are people that have a lot of features of migraine and their their headaches don't quite meet criteria for cluster but maybe they wake up at the same time every night with them maybe then pace with them maybe they get a few autonomic symptoms and whatever I hear about that even though I can't officially say it's cluster it usually kind of sways my treatment and I tend to use medications and treatments that we use for cluster as opposed to those that I would necessarily you know think about first like for migraine okay and so then the second part of his question was you know chronic migraine versus cluster how do you differentiate those two again it's the description of a headache really and the duration of the headache correct that helps distinguish them okay well let's let's go out this really good question let's go on to some of the newer therapies that are available I know you're involved in a number of clinical trials and there are some new devices out there sure what are those sorts of things that people should be on the lookout or notor thing to ask their physician about okay so the newest device that was just FDA approved and came on the market this summer is called the gamma core device mm-hmm and it is an external vagus nerve stimulator we are actually part of the clinical trial here at UT Southwestern on that device and it is currently available on the market it's a little device it's about the size of an electric razor and it stimulates the vagus nerve which is a great big nerve that comes from the brain that goes to all different parts of our body and it stimulates it from the outside so you don't have to have surgery there's no wires there's no Wow nothing invasive about it but it kind of lives right next to the carotid artery in the neck so when patients start to get a cluster headache they turn on the stimulator they put a little gel on their neck and they put it usually on the same side as the pain and and they apply it and it delivers a pulse of stimulation which can be regulated by the user as to the intensity of the stimulation but it stimulates for two minutes and you repeat it several times and actually the the clinical trials that were done showed that at least a third of people who use the stimulator got either excellent relief or the improvement in pain or relief of pain total relief of pain within 15 minutes so the nice part is it's very safe I mean so far there have been no signals that there's any untoward reactions from him it's portable unlike an oxygen canister it's for a ball and you can use it multiple times a day unlike the triptans where there are quantity limits right so that's new and so is that something that it that a patient could carry with them or is it something they would need to go to a physician's office they need to have a prescription for it okay and the device would be sent to them and then the company has a way of it's good for a month and then if the patient needs more than they sign up for more okay so but it's one of those things that if it works you're gonna know pretty quickly when they did the clinical trials there was also a signal that people who used it frequently tended to have a reduction in their headache frequency over time so like many of the neuromodulation techniques that are happening in headache there seems to be a long term effect not just the immediate relief wow that's that sounds like a really good grant option for some people out there so now you're recruiting people for some current clinical trials do you want to talk about those for a minute sure there's one that we just finished and I'll tell you about damma that we were recruiting for now so the one that we just finished the data are not analyzed yet we're still following up the patients is this Fino paletine ganglion stimulator which is why I brought mr. skull yes show us so this is a very cool thing it is a neural stimulator that gets put in by an oral maxillofacial surgeon right gets inserted up through the gum line and then it ends up it's about that big so it's not very big and on the bottom are the places where it gets screwed into the jawbone okay and on the top there are little areas that provide stimulation but there are no wires it's all controlled externally and it's programmed to stimulate in the places where it's most effective for the pace hall so there's some personalization here so basically they take the device and they put it right up under the gum line around up into the space that's called the terrible Palatine fossa which is where the speedo paletine ganglion lifts and the patient heals from surgery and then they get their stimulator program and there's the control that's actually external it's a little controller it's about the size of a cell phone and when the patient gets their headache they hold it up to a face and they turn on the stimulator Wow so it's actually been cool I mean I don't know the results of the trial and yeah you know I was a an investigator and I don't know if my patients had the real stimulation or the Sham stimulation or what they got right but it is already on the market in Europe and they they were you know back there enough results so that it's already being Wow they're in clinical practice Wow the trial that we're recruiting for and this is also hot in migraine are these calcitonin gene receptor sorry calcitonin gene related peptide that's why they call it C GRP monoclonal antibodies right so these are there's four companies making them they're all given by either injection or IV infusion right on and one of the companies has a trial in progress it's a nationwide clinical trial for cluster headache everybody studying for migraine right now only then one of the companies is studying it for cluster hopefully the others will soon but we're looking our particular site is studying chronic cluster headache we're looking for patience I think it's between the ages of 18 and 65 with chronic cluster headache and there are other sites in the country that are also looking at episodic cluster headache our patients get three injections under the skin that are given at periodic times and they either get the real thing where they get the lesea Bo and after the main outcome is determined then everybody gets the real thing so there is an open lingual phase so if you want to participate in that go to our website search for find a clinical trial you should be able to navigate and be able to elite to send your information if you're a candidate or not a candidate for that that'll be open soon we have about three minutes laughs or maybe one more question I'm gonna have it in I think one thing to be helpful if we could let's review like what are the symptoms of closest cluster headache it's go back one more time severe sudden onset of pain centered usually around the eye on one side of the head may radiate to the back of the head into the cheek into the jaw into the neck it's excruciating it's usually not throbbing patients generally get agitated with them they distract themselves they don't usually lie down they may rock back and forth thing they get up and walk they may inflict other bodily injury associated with those trigeminal autonomic symptoms tearing bloodshot eye droopy eyelid and swollen eyelid stuffy nose runny nose fullness in the ear facial redness or facial sweating lasting anywhere between 15 minutes and 3 hours often recurring anywhere from every other day to eight times a day so if you're a caregiver for somebody or you're with somebody that has clinic cluster headaches is there anything that somebody else can do to help should you just stay away it sounds like dark rooms don't help I mean realist maybe get the guns out of the house we didn't we didn't talk about this we were going to right you are yes yeah so the stuff cluster headaches are called suicide headaches and sadly there's a good reason for that that the risk of suicide with cluster headache is about 20 times the general population so it does have a severe impact on people's life but just recognizing that it might be cluster headache I think is a first step and going to see a headache specialist or somebody that's really well-versed in this can make a huge difference and really if for those of us who do this for a living you know when when we get people better who have cluster headaches there is no doubt that we have given them their life back it is a wonderful thing to be able to sing yeah we are all out of time it is exactly 3 o'clock we want to thank everybody that Sue and Dan looks like we had a really big crowd so thank you for all of your questions thank you to the National headache foundation for helping support this chat thank you to dr. Freedman for joining us my pleasure have a great day

Channel: UTSWMed

Views: 24,830

Rating: 4.8832893 out of 5

Keywords: UTSW, Facebook Live, FB Live, Migraine, Cluster Headache, Research, Deborah Friedman, Health Care, UT Southwestern, headache, headache therapy

Id: aZmbUyKEfr4

Length: 28min 34sec (1714 seconds)

Published: Thu Sep 28 2017