Chris Hannah, founder of CHSG, talks cluster headaches, clinical trials and more

Posted June 29th, 2015 by

In the beginning of June, we posted about National Headache and Migraine Awareness Month, and today, we’re continuing the conversation with Chris Hannah, the founder of Cluster Headache Support Group (CHSG). He recently sat down for a PatientsLikeMe blog interview, and he spoke at length about everything related to cluster headaches. Below, read what he had to say about PatientsLikeMe, new drug treatments for cluster headaches and his own personal experience with “the worst pain he has ever felt.”

What do you feel is the most important information people should know about cluster headaches vs. other types of headaches?

First and foremost, if you are a cluster headache sufferer, it is important to know that you are not alone. It may seem that way since so many have never even heard of it and often mistake it as just another name for a regular headache. It is actually one of the most painful conditions known to medical science (you can Google that). It’s also not a form of migraine, it is a primary headache disorder but is quite different from migraine in many ways, especially given its odd periodicity where sufferers will have attacks at the same time of day, even the same time of year, over and over again. The pain is excruciating, typically centered around the eye on one side of the head. It also is accompanied by parasympathetic nerve response, causing tearing of the eye, eyelid drooping, running or blocked sinus, and ear ringing. It is quite disorienting when it occurs, and may occur 8 or more times in a single day lasting from 30-90 minutes typically. An attack may also be triggered at any time by consuming alcohol, chemical or perfume smells, second-hand smoke, and many foods.

For those who know someone diagnosed with cluster headache, please know that they are dealing with an insidious and debilitating condition. They are most likely under the guidance of a highly skilled neurologist who specializes in headache disorders. It may be hard for them to socialize as they did before onset, even with family and close friends, because they fear having an attack in public. Where migraineurs can lay their head down, cluster headache sufferers are unable to stay still, often including odd behavior like slapping their head or walking in small circles. This is not a conscious choice, rather the body’s way of dealing with the intensity of the pain. Please give them space but also your compassionate support. They are not looking for things to try that you may have heard about. They are probably experts in all options available to them as is the case with many chronic pain conditions and rare diseases.

How do you feel CHSG.org members might also benefit by becoming members of PatientsLikeMe?

I think one of the key benefits of PatientsLikeMe is codifying anecdotal data that all too often gets lost in the daily dialog of our support group. I think both are still very important, especially in terms of the experience and expertise of the community. Keep in mind that as a global organization, we benefit from the patients of some of the greatest minds in healthcare from all of the major headache centers, along with the many years of experience of many of the members. Although we have that information capital, turning that into quantifiable data for research can be quite challenging. PatientsLikeMe helps us translate each person’s experience with treatments, symptoms, co-existing conditions, and emotional well being into aggregated data that may help clearly identify new research targets, correlations to other disorders or demographics, even the number of patients who suffer similar disorders. It is done so in a positive way, helping the patient with excellent recording and tracking capabilities, even a doctor’s visit report. At the same time, it is helping to accumulate data over time across a diverse patient audience all living with the same disorder. We have a name for this ongoing data collection, reporting, research cycle, called SpiralResearch. We frankly see this collaborative approach as the future path of medical research for rare disorders in comparison to the onerous process of enrolling people in a point in time survey or one-off study that eventually gets published in summary as a document in hopes that someone will take it further, or better, correlate the results across many publications. We think there is an opportunity for greater synergy and insight in the process of continuous data gathering and analysis.

Do you have a personal cluster headache story you’d care to share with the PatientsLikeMe community?

I was in the prime of my career in the pharmaceutical industry when I initially encountered the worst pain I had ever felt. I was at a Harry Potter movie with my family and had to go straight to the emergency room. I truly thought I was going to die. It took six months from that point to get a diagnosis of cluster headache. Unfortunately, due to its rarity, approximately .3% of the population, even healthcare professionals are not all that familiar with it and may have never seen a case. I ended up getting a clear diagnosis first at the Jefferson Headache Center in Philadelphia and a second opinion confirmation from the Cleveland Clinic Headache Center. Until then, I was prescribed opioid pain killers which were largely ineffective. I was having on average 8 attacks per day interspersed with an ongoing baseline headache that made it hard to do anything. Of course, I didn’t sleep much either during that time and actually was housebound for most of the time, like I dropped off the face of the earth. That’s not easy for a man with a family, friends, a high profile job, and an avid golfer and outdoorsman. I had no idea such a thing even existed until I got it myself.

I searched out any and all information about cluster headaches. I found some online communities, but frankly, I did not like them much. They were full of people who were self medicating, self harming, and there were frequent issues of suicide. In fact, cluster headache is nicknamed the “suicide headache” because the effects are so profound on daily living. I decided there must be a better way, especially a way to work within the healthcare system, with pharma and other organizations to improve the quality of life and the resources available to cluster headache sufferers. There remain no preventive treatments specifically indicated for cluster headache although there are some partially effective off-label medications typically prescribed with varying results. For some like me who are chronic sufferers, finding relief is a long path. It is a life-long disorder, incurable currently. We hope to change that. In fact, since starting CHSG in 2010 and incorporating in 2012 as a 501c3 nonprofit organization, we have contributed to several new clinical studies and have even introduced effective treatment options through the headache centers we touch. We also offer a safe, compassionate place for sufferers to learn, share, connect, and engage with activities like our integration of PatientsLikeMe in our overall strategy of spiraling toward a cure.

In your opinion, what are the most promising drug treatments available to people suffering from cluster headaches? What about clinical trials—do you feel people with cluster headaches are good candidates for new drugs still in clinical trials?

We (CHSG) have most recently been working to trial ketamine infusion therapy in the hospital setting with excellent results that will, in fact, be published this year in Cephalgia and Neurology. Ketamine got a bad name from illegal street abuse, but in fact it is an approved, safe, and effective treatment for several neurological disorders, pain, and anesthesia. It is also opioid reducing, meaning it reduces dependency on opioid pain killers for chronic pain. Opiods are highly addictive and in the case of chronic pain conditions, often have diminishing efficacy, so people take more or seek stronger pain relievers. It’s not a viable path. Ketamine, on the other hand, is effective, non-addictive, and has a short half-life in the body. One of the most compelling effects of ketamine infusion therapy is based on neuroplasticity, meaning the brain actually has the opportunity to create new pain pathways, eliminating the “broken” and overexcited pathways common to chronic pain conditions. This is currently my primary treatment.

Another interesting avenue we are pursuing is that of TRP Channel antagonists, specifically TRP V1, A1, and M8. TRP channels are a basic mammalian sensory system that react quickly to certain noxious stimuli, including bright light, chemical smells, certain tastes like the hot in hot pepper, atmospheric pressure change and mild temperature increases. Interestingly enough, these specific stimuli are also the most common triggers for both migraine and cluster headache. There are several candidates currently in the pipelines of both biopharm and pharma as TRP channel antagonists. We do have some work to do to initiate evaluation for cluster headache and migraine and are actively in pursuit.

For many sufferers, there are viable medications that show efficacy at least for a time. Most do have to switch medications throughout their course due to taking relatively high dosage levels of “borrowed” medications primarily indicated for blood pressure regulation, anti-seizure, or serotonin gating. The high dosage levels prescribed for cluster headache introduce many side effects, including heart arrhythmia, low blood pressure, dizziness, severe fatigue, and even confusion. There are also two very good abortive approaches. Sumatriptan injection is effective for most, but limited to no more than 2/day and 4/wk which leaves quite a gap. High-flow oxygen at 12-15LPM also works for many and is quite safe with little side effect. Unfortunately, there is no complete solution yet for most sufferers.

How to you feel tracking or logging on to websites like ours is useful in terms of identifying headache triggers, learning about pain-management therapies, and moving researchers to find treatments for cluster headaches?

There simply can’t be too much real information, but making sense of it can be quite a challenge for the patient, especially in the mix of so much misinformation on the Internet. PatientsLikeMe and CHSG both help distill that information into a quickly understandable and informative format that is based on both experience and research. There is always more to learn, more options to consider, and new information coming from the ongoing collection of data across a wide base of users. Distilling that down into an easily digestible form is what PatientsLikeMe does best, in my opinion. It’s not just about patient tracking and learning about their own conditions, which is quite important; it is also about looking at the data across the patient base and identifying key commonalities and correlations that may not have been visible previously. This information is shared freely with all patients, ongoing. That “informing” process makes better patients, frankly, and puts the knowledge in their hands to help them better manage the dialog with their healthcare provider and others. It builds up the community both individually and as a patient group.

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19 Comments

  1. I am only speaking for myself, but I, personally don’t like talking about my Ch’s with strangers so that may hold us back a little. I’m scarred of experimental drugs since I have never been on any, my personal choice, the side effects scare me to death. I do take O2 to abort, just because, 95 % of the time it does work for me, with no side effects. I don’t want to be a Guinea pig to find out if something that’s going to mess me up even worse.When I got these headaches 9 years ago, it has been a nightmare for me. Didn’t know a humane could hut so bad and survive.

  2. I am a cluster headache sufferer, what I found is drinking lots of water and cutting on alcohol helps.

  3. I have CHs since 2012 and have been through out the Midwest seeking help. My biggest problem with the usual treatment is my reactions to the medications. Unfortunately my only relief is going to our local emergency room for a Demerol injection. My family doctor and my neurologist at Mayo Clinic are still looking for a med that I may tolerate but until then it’s the injections. If anyone may have any suggestions please share with me.
    Thanks

  4. I have been a cluster headache sufferer for over 35 years and had all but given up on any treatment.
    My headaches had gone away for 5 years and then about a month ago, holy terror strikes again. Luckily for me, my doctor had some knowledge of the condition and sent me to a very good nurologist, who had worked with a few other sufferers as myself. He prescribed me verapamil.
    I have been taking verapamil for a few weeks now and so far I’ve only had one cluster headache, so it’s working for me for the most part and the one headache I did, I used oxygen to help ease that one. So if you are a sufferer, please don’t give up, I had to try about 10 different meds, over the course of many years before I found something that worked.

  5. CH – i have been trying since 2009 to find a link to what causes my cluster headaches. What I have found to coincide with them is: sleeping on my left side, drinking wine, and exposure to dust. II recently stopped sleeping on my left side and it has seemed to help in not having them at night. Dust: wow, if I get near it, its almost an instant onset of CH. Drinking a glass of wine – as long as I stick to New Zealand sauvignon blanc kind, I’m good. I also feel that my cluster headaches don’t occur as much when I take my asthma med (symbicort) regularly like I should. One other thing I do is to use a humidifier at night.

    It seems as if allergy and oxygen play a large part of CH. The left side of my face where the CHs occur stays stuffed up – like my left nostril is always stuffed up when I wake up and my left ear gets a clogged feeling and severe pain when cold air blows init (I also have constant ringing in my ears). And my left eye has a sinus streak in it when symptoms are worse.

    The fear of onset is something that has changed my spunky attitude in life so I want to make the CHs stop so my fear will go away and my life spunk will come back.

  6. I’ve suffered from episodes oh CH for about 20 years. One just started a couple weeks ago. I do cut all alcohol during an episode which is disappointing for an avid beer lover like myself (no….not an alcoholic, just enjoy beer). As I type this I just finished one. 8pm-9pm nightly is my trigger time. I recently moved and will have to educate my new physician I am sure. Other than Sumatriptan (I have had some success with nasal) and O2, have any of you found anything else to be effective? Something that does not need a prescription of a Dr.? Maybe a Chiropractor? Specific positions like declined for blood to the head or inclined for away? Ice pack, heat pad? Yelling…….anything at all? I’d be willing to try anything. During mid headache if someone said “if you lick that goat’s butt over there it will make it stop”….. I’d probably run to lick the goat. So if anyone has found something that has seriously helped no matter how crazy it sounds, I am all ears.

  7. Not sure if it’s a thing or not but I was told in the past to try peppermint pure essential oil (smell) when I felt a headache coming on. It very well could because i may be toward the end of my cycle right now but it seemed to help. Could just be a mind thing though because it calms me down, haven’t tried it with a full blown headache that wakes me up yet.

  8. I have had CH for about 10 years and I have found that Zomig nasal spray is usually effective, if inhaled right at the start of an attack. It does need a prescription, but it is possibly more easy than injections and O2 because can be carried around and easily snorted. Hope that helps!

    This really is one of the most terrible conditions and I can’t believe it exists. It’s very difficult to function in life and deal with relationships. I really want to know more about the causes. I know smoking is related, and possibly genes. But we need more research!

  9. It was interesting to read about Ketamine in Chris’s piece above. Has anyone tried this? What is “infusion therapy”? Should it be taken at the start of an attack? Has the report been published now?

  10. I have been one who has suffered from Cluster Headaches for the last 7-8 years. Repeated trips to the hospital and extremely high medical bills. So I have tried ever medication know to man for headaches as well as Botox.

    I ended up on a deployment in Canada for my job and started experiencing the same headaches. The pain is absolutely unbelievable. I just happened to be driving down the street and seen a Chinese Herb store. I past the store and told myself I want to go into the store but the first thought had nothing to do with my headaches. I am a person who loves to take care of my skin and beauty so therefore I was wanting to stop and pick up some possible skin cream and also some ginseng.

    Let me backtrack right quick for some reason after my attacks I don’t always remember. Ok so I decided to go into the store and I picked up ginseng and another herb that helps with memory Ginko Bilboa. While I was in the store I seen headache herbs but thought to myself it cant be better than what a doctor has prescribed.

    Days past and my headaches are right on time. So I go back to the store and decide to just try the herbs. Well I picked up a tea for me to stop smoking which is a tea from Jianxi Natural Tea-Green Tea. and I also picked up 999 Zheng Tan Wian. I first heated the tea in order to help with the smoking and decided to put the Zheng Tan Wian in the tea. Lets just say my headaches have been demolished.

    I always know when my headache is coming because my mouth is extremely dry and water makes me feel funny then a small pressure point in my temple feels like its been pressed. Since I have been taken them both I have had no pain. I wanted to test tomake sure so last night I felt an attack coming. I simply opened the little package of Zheng Tan Wian and swallowed the little beads. No attack and I slept well.

    I hope this helps but I understand the pain and suffering and this is what worked for me.

  11. I am 47 years old and have been suffering from CH for 24 years and even had surgery on my neck (c-3) vertebrate nerve was blocked thought that was the problem,NOT.I have taken a lot of Prescribed meds from different doctors over the years, was on time release morphine and dilaudid at the same time(didn’t know where I was half the time)After four hours in tears on the floor didn’t work.To the point the only thing that has helped me is Botox shots.Its a small needle which the doctor targets the muscles in your neck underneath the skull and around your head, even the forehead it consists of a total of 35 shots a visit normally up to 3 visits the last visit was August 2014 and haven’t had a headache since (2 years headache free)until now.The pain we go through with the CHs,shots don’t hurt a bit. People ask what’s the long term side affects be careful. Who gives a shit I haven’t had a CH in 2 years,most of them don’t have a clue the pain we go through. What about all the meds that’s been pushed on us in the past trying to escape the pain,what about those side effects? Oh yeah one more thing,try hot water running on your head as hot as u can stand it and have your wife or whoever switch to cold instantly.. that has also worked in the past along with oxygen..hope it helps someone.

  12. I’ve heard a few of you asking about possible ch help. I was diagnosed when I was 16 (25 years ago). I feel like one of the lucky ones because even though it took a few years to find a med that helped, a neurologist finally prescribed me Amitryptiline (elevil), which I’ve been on for about 20 years. It has really helped but obviously not gotten rid of them completely. The difference is, before I started the elevil, a cluster bout would last several months with several headaches a day. With the elevil the bout only lasts a few weeks and taken properly only 1-3 severe headaches per bout with bouts coming about once a year. So a few bad ones a year is great compared to the alternative. The way I use the elevil is like this… When I start to feel a bout coming on I actually wait till I get the first bad headache ( have an imitrex injection ready for this headache), that’s when I start the elevil, which I take 1 per day for 30 days. Usually within 7 days of starting the med the headaches are very under control. I’ve found that it’s super important to not miss a day of this med at all. Take all thirty days. Religiously. By day 14 my headaches r pretty much gone. In the meantime I get a prescription that consists of 4 imitrex injections and that usually takes care of those couple headaches that I get in the first 7 days of the elevil. By the way, if you haven’t tried the imitrex injections, they knock my headache out in less than one minute. The down side to the elevil is that it’s a depression med so it has some pretty nasty side effects as far as I’m concerned. The worsed is that it makes me in to kind of a zombie. Meaning it takes away from my personality, sense of humor, thought process, social ability, and even sex drive. Yes I know this sounds terrible but the headaches are much worse. Other side effects are sleepyness, dry mouth, constipation and a host of other minor stuff. The upside is that I only have to deal with this for 30 days a year. I’ve been told over the years that some people grow out of chs in mid to late 30s. This may be true for me because the bout I feel coming on now is the first in 2 1/2 years instead of every year like before. Plus some of the characteristics have changed. I hope this helps some of you that haven’t yet found relief.

  13. Great info. Lucky me I found your blog by chance (stumbleupon).
    I’ve bookmarked it for later!

  14. Wonderful article! We will be linking to this great content on our
    site. Keep up the great writing.

  15. I been dealing with ch for 7 years, since I was 17 and I’m 24 now. I wasn’t completely diagnosed until I was 22 even though I knew what my condition was the doctors would insist it’s a migraine and none of there meds worked. I got to my breaking point when I couldn’t open Christmas gifts with my son on his 3rd Christmas because I was in bed practically in tears fighting a CH. after that weekend I immediately went to my primary and explained something had to be done. He referred me to a neurologist who actually listened to me and practically saved my life. I’ve been on gabapentin 300mg 4 times daily and sumatriptan tablets 50mg for awhile I was great headache free. Recently I been in a cycle and the headaches won’t stop, it’s a hard life to live but now having experience of dealing with the beast (ch) I’ve been able to manage compared to what they use to do to me. I feel for all ch sufferers people can not truly understand what we go thru until they have one themselves, thanks for listening and I wish everyone good luck.

  16. I’ve been having horrible headaches and the only thing that seems to reduce them is ketamine. Does anyone know if the Mayo Clinic in Florida offers treatment using ketamine?

  17. Just know there’s hope, don’t give up, no matter how bad the pain is, it will go away. When I had my first CHA I swore I was having an aneurysm. Clusters took 3 months of my life this last year rendering me completely useless in my first year of my career. Thankfully I saw that intense exertion (10 mile + run), stress, chocolate, and alcohol worsened things. I had a great neurologist that respected my goal of an ultra run (30+miles). We put them into remission with high dose dexamethasone for a week (worked great but side affects of steroids make it a temp cure), tried amitrptyline without success, and finally my life changed with verapamil ER 180 and magnesium at night. I finished my race and actually got off the medication & continued to race. It happened to my mom 3x in her life sobi expect them to happen again but adding verapamil makes me 100% normal during these cycles. There’s hope dont give up.

  18. After watching my husband suffer for years with cluster headaches and feeling helpless as he was suffering I was determined to find a cure for these headaches. I did lots of research and listened to other people talk about their headaches on blogs. This is what I discovered that has brought my husband’s cluster headaches to a halt. No more cluster headaches. Don’t drink alcohol but DO drink lots of WATER(good water, we only drink Crystal Geyser spring water, THE BEST WATER), do NOT drink sodas, do NOT smoke ( depletes oxygen in the blood which causes these headaches), do NOT eat refined sugar (causes inflammation which triggers headaches, use stevia, Truvia is good), do NOT drink caffeine (NONE, give it up!), eat healthy food that supports the body and the immune system ( fast food is NOT considered healthy food and protein and greens are very important for good health), stay off of computers and staring at cell phones as much as possible, don’t watch tv before going to bed (relax before bed), listening to soothing music before bed is helpful, and PRAY, yes, pray because there is HOPE. I found hope for my husband and I am thankful that he is not suffering anymore but able to live his life again. You can too!

  19. My husband has been suffering cluster headaches last 4months swing neurologist appointment and scan He has Parkinson’s dies any one know if there is a link He is on dopamine antagonist

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