Cluster headaches explained

There are several types of headache disorders, not just migraine. That’s why it’s so important to see a true headache specialist. All headaches are not equal and treatments for each one can be very different. Sometimes patients get diagnosed with migraines when they really have another headache disorder. Some unlucky individuals meet criteria for more than one headache disorder.

We migraineurs are a little sensitive about the word “headache”. It can be used to trivialize the horrible symptoms we have to endure. So we’ve been conditioned to specifically use “migraine” or “migraine attack” to describe our symptoms. That’s a good thing. However, coping with our own stigma can set us up to inadvertently stigmatize other truly horrible headache disorders. That was the case for me until I experienced a nightmare that made migraines look like a walk in the park.

Fifteen years ago I experienced a headache unlike anything I have faced in 40 years of migraines. There really are no words to adequately describe a cluster headache, but I will try. The stabs hit fast and hard – no prodrome, no aura, no warning at all. They slammed like white-hot knives into my right eye, sending acidic tears pouring out. Ice and heat both felt like burning coals on my head. Medication had no effect. It was impossible to sleep or sit still. The fire in my head and face drove me to my feet. I screamed, cursed, and wailed in agony as I paced and rocked back and forth. I pulled my hair out in clumps and slammed my head against a cast iron tub. Convinced I was about to die, I begged my then 7 year-old daughter to call 911. Six long months later, I was finally diagnosed with Cluster Headaches and treated. 15 years later, I still get attacks every week in addition to migraines. There is no mistaking one for the other. The only thing these disorders have in common is that they cause head pain. The quality, nature, intensity, and character of the attacks are completely different.

I meet a lot of migraineurs who say they have “cluster migraines”. I try not to let it bother me because most of the time that person really doesn’t know how insulting that term is to someone diagnosed with cluster headaches. Generally when people say they have “cluster migraines” they mean that they have “clusters” of migraines for several days or weeks at a time that are difficult to treat, keep coming back, or recur seasonally or on a schedule. Many people were given this descriptive diagnosis from a well-meaning doctor who was not a headache specialist.

Cluster headaches affect about 0.1% of the population. Many are misdiagnosed with migraine and improperly treated. Still others suffer for years, undiagnosed, and untreated.

A pain like no other

Subjective pain scale ratings are part of the problem. We all have different levels of pain tolerance. The exact same leg fracture might be a “3” to one person and a “9” to another. There’s just no way to scientifically quantify the severity of a headache disorder by individual pain perception. However, the severity of pain is one of the hallmark symptoms of Cluster Headaches. This isn’t a case of “my pain is worse than yours” competitiveness. The pain of a cluster headache is some of the most severe pain known in medical science. Nothing really compares to it. Women with the disorder say that the pain of childbirth was “a breeze” compared to a cluster headache. Similar pain due to injury or illness usually renders a patient unconscious within minutes. Some cluster headache patients do pass out because of the pain. Most patients describe the pain as “a hot poker”, “an ice pick”, “burning”, or “boring”.

Speaking from experience, nothing has ever come close to the pain of a cluster attack, not even my worst “10” migraine. I’d rather have chronic daily migraines than face one more cluster attack. I’m not trying to start a “pain competition” between migraineurs and clusterheads. Both are terribly painful. However, I really don’t know how to explain cluster headaches without comparing my own experience with both headache disorders.

Diagnosis

As with migraine, the “gold standard” for diagnosing Cluster Headache is the International Classification of Headache Disorders, 3rd Edition. When patients and doctors use the term “cluster migraine” they really don’t understand how headache disorders are classified and diagnosed.

Cluster headaches are classified as a Trigeminal Autonomic Cephalalgia (TAC). Other headache disorders in this same classification are SUNCT (Short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing), SUNA (Short-lasting unilateral neuralgiform headache attacks with cranial autonomic symptoms), Hemicrania continua, and Paroxysmal hemicranias. All of these disorders activate the trigeminal parasympathetic reflex. Unilateral activation is a unique characteristic to all TAC disorders. Cortical spreading depression is not involved in TAC disorders nor are they classified as vascular headaches.

Diagnostic Criteria

  • The pain is severe to very severe and located in or around one eye. The pain may spread across the temple and over the ear. It lasts 15 minutes to 3 hours and can recur many times per day for months or years.
  • Other neurological symptoms affect only the painful side: excessive tears, nasal congestion or runny nose, swelling of the eyelid, excessive sweating, flushing of the face, sense of ear fullness, eyebrow and/or eyelid droop, and constricted pupils
  • Patients are restless and agitated. They pace and rock about, moaning, screaming, and even cursing uncontrollably.
  • Episodic cluster headaches occur in cycles lasting from 1 week to 1 year. Between attacks, there is a pain-free period of at least one month. These cycles are what give cluster headache its name.
  • About 10% of patients become chronic. Most do not get any breaks between cycles. A lucky few will get breaks of less than 30 days before starting up again.  Patients must have non-stop cycles or breaks of less than 30 days for at least 1 year before receiving this diagnosis.
  • Attacks can be triggered by alcohol, nitroglycerin, or histamine. Patients often report other triggers such as flashing/strobe/bright lights, loud noises, strong smells, etc. However, triggers appear to induce attacks only when the patient is “in cycle”. Between cycles, episodic patients can consume alcohol and risk exposure to other triggers without fear of an attack.
  • Typical age of onset is 20-40 years. Men outnumber women 3 to 1.

Treatment

As with migraine, treatment involves both prevention and acute treatment. Unfortunately, there are no OTC medications that will touch the pain of a cluster headache.

Abortives

Oxygen – 100% pure oxygen at a high flow rate (10-15 lpm) for 15-20 minutes using a non-rebreather mask will abort most attacks.

Lidocaine – 1 ml of a 4% solution of lidocane used as nasal drops can abort some attacks. It can be repeated after 15 minutes if still needed.

DHE – Intramuscular injections work best. Nasal sprays are effective for some patients.

Sumatriptan injections – This little gem can usually abort an attack within 15 minutes. As with migraine, it does nothing to prevent attacks. As often as patients experience attacks while in cycle, prevention is absolutely essential.

Zomig nasal spray – This new delivery method was recently approved for the treatment of acute cluster attacks. However, this option is very expensive. A case of 9 single-use sprays can cost as much as $300.00.

Transitional therapies

Oral corticosteroids can be tapered over one week at home. An IV infusion over a few days is used in a hospital or clinic setting under medical supervision. Both are usually effective at stopping a cluster headache cycle, giving long-term preventives time to work. Corticosteroids should not be used more than once a year to prevent serious side effects.

Preventives

Verapamil  is usually the first-line preventive. Unlike its use for migraine preventives, only immediate-release Verapamil given in three daily doses is effective at preventing cluster headaches. Doses tend to go much higher than for migraine. Some patients need up to 800 mg per day to achieve remission. Higher doses require routine EKGs to monitor for a rare but serious AV heart block. The most common side effects are constipation, fatigue, and dizziness.

Lithium has a high rate of side effects, so one of the other options is usually considered first. However, Lithium has good track record of cluster headache remission. Typical doses are 600 – 900 mg per day. Regular blood tests are required to monitor patients for therapeutic levels and toxicity.

Depakote can be administered in slow-release single doses of 1,000 – 2,000 mg per day. Clinical trials have demonstrated a 50% reduction in number of attacks.

Topamax doses are similar to its use as a migraine preventive. Doses of 200 – 400 mg per day have shown similar efficacy to Depakote.

Melatonin has been shown to work as well as Verapamil in episodic patients. Typical dose is 9-10 mg at bedtime. Most cluster headache patients have low melatonin levels, particularly during active cycles. This is the only OTC preventive currently recommended by headache specialists.

Psilocybin use is illegal in the U.S. and highly controversial. However, there are a number of cluster headache patients who have achieved remission using psilocybin.

Surgical & experimental treatments

Deep brain stimulation and occipital nerve stimulation are the two medically recognized surgical treatments for cluster headache that does not respond to pharmaceutical intervention.

A variety of other surgical interventions on the trigeminal nerve and sphenopalatine ganglion have been attempted with varying degrees of success. As with migraine, more research is desperately needed. Unlike migraine, cluster headache is so rare, it doesn’t get a dime of research funding from NIH.

Two clinical trials are currently underway:

gammaCore vagus nerve stimulation – Clinical trials are complete and results are pending.
Sphenopalatine Ganglion Stimulation – Clinical trials are now taking applications for participants

Theories on Causation

Attacks have shown to activate the posterior hypothalamic grey matter. No cortical spreading depression is present. Vascular inflammation is secondary to onset of attack.

They have been nicknamed “alarm clock” headaches because they tend to occur with precision-like regularity at the same time each day. It is thought that human “biological clock” is disrupted as many patients are wakened by attacks in the early morning hours. Cluster attacks have a preference for REM sleep so many patients wake to an attack just a few hours after falling asleep. Sleep disorders are common.

For some patients, sleep apnea is an aggravating factor. Once treated with a CPAP, these patients will see a dramatic reduction in nighttime and early morning attacks.

Burden of Cluster Headache

Cluster headaches are also called “suicide headaches” because many patients deliberately take their own lives to escape the pain. Some patients who were not suicidal have seriously injured or killed themselves with their desperate attempts to stop the pain. It is not uncommon to observe a patient beat his head against the wall, hit his head with hard objects, or tighten belts around the head during the worst of an attack. If not treated, the risk of fatal injury is quite high.

“There is no more severe pain than that sustained by a cluster headache sufferer and if not for the rather short duration of attacks most cluster sufferers would choose death rather than continue suffering.”   — Dr. Todd Rozen

Take home points

  • Cluster headache is a unique headache disorder, separate and distinct from migraine in both cause and symptom profile. It is often misdiagnosed and under-treated.
  • If you are having symptoms that make you think cluster headache is a more accurate diagnosis, please see a headache specialist right away. This isn’t a headache disorder you can manage with a couple of Excedrin and a nap.
  • If you think you might have both migraine and cluster headache, it is imperative that you see a headache specialist who can safely and effectively treat both headache disorders.
  • If you have been diagnosed with “cluster migraine”, please see a headache specialist for an accurate diagnosis and appropriate treatment. And please, out of respect for your clusterhead brothers and sisters, refrain from using the word “cluster” to refer to anything but a true cluster headache.
This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
  1. ClinicalTrials.com US National Institutes of Health. Available at: ClnicalTrials.gov
  2. Cluster Busters. Available at: Clusterbusters.com
  3. Headache Classification Committee of the International Headache Society (IHS). The International Classification of Headache Disorders, 3rd edition (beta version). Cephalgia. 2013; 33(9) 629–808.
  4. Rozen TD. Cluster Headaches. Diagnosis and Treatment. Touch Neurology. Available at: http://www.touchneurology.com/articles/cluster-headache-diagnosis-and-treatment?page=0,5.
  5. Goadsby PJ. Treatment of Cluster Headache. International Headache Society, Information for Health Care Professionals. Available at: http://www.americanheadachesociety.org/assets/1/7/Peter_Goadsby_-_Treatment_of_Cluster_headache.pdf

Comments

View Comments (10)
  • pwrnapper
    2 years ago

    Hi Neece, just read your comments but they are over a year old. I was wondering how you are doing and IF you finally found some good solutions to your Migraines and Clusters? Having experienced similar problems over decades maybe I can be of help with treatments that have worked on me and those that didn’t. I can also be a good listener too, been there done that. Let me know what’s going on and if you want contact. Glad to help Neece, anything to save a life.

  • Neece
    3 years ago

    I was diagnosed in 1997 with Cluster Headaches while pregnant; luckily the doctor who treated me knew it right away because he had them, and sent me to Deborah Heart and Lung to run tests which proved it (I was having them during the visit luckily). Needless to say I ended up “dying” for 2 mins when giving birth (HBP 210/180, in the middle of a cluster headache which none of the doctors realized, 7.5 weeks premature birth) Since than I had found amazing doctors up north who knew how to treat me. I go into remission for 4-5 yrs at a time, most the time it will last a month, but I never had migraines, until now.

    I started to get a growth under my left ear, (tested for everything u can imagine) it grew, as it grew it put pressure on my inner ear, 2.5 months later(ENT said I’m clear all around) but the pressure started to put pressure on my brain, I can feel it, I can’t look to the left for too long (1 min+) I can’t sleep on that side which is impossible as I toss and turn a lot. One doctor said “just don’t put pressure on it…it’s 1.5 inches, kinda hard to not put pressure on it when I eat or sleep or turn to look when driving or something happens.

    Needless to say I started getting extreme headaches which they determined were migraines, than I ended up in the ER, they dosed me with a LOT of meds and the pain was still insane, so they gave me a LOT of stuff to “calm” me, during which I had a LP, it had extra blood in it, they said a week ago when the pain was too much to handle they think I had a micro-aneurysm “burst” but most the time they will repair themselves but cause severe pain. Over a month later I am suffering 5 out of 7 days with Cluster Headaches 2 a day same time of day and afternoon, like clockwork. On the “off days I’m still getting migraines. Been waiting a month to even get 1 neurologist to give me an appointment, but so far NONE have even taken my call after receiving the referral. (I’m guessing they just don’t know what to do so they don’t want to waste my time)

    What little time I get to go online now I am searching everywhere for help, but ofc most (even doctors online) don’t have a clue and repeat what I already know. I’m 37 I’ve been suffering from CH’s for 20 years, but something has made them worse than I can handle. Yes my Dad had brain aneurysms which almost killed him. My cousin has both CH’s and Migraines which trigger the CH’s as well. Both different sides of the family. Both said reducing stress helps a LITTLE, but it’s virtually impossible to avoid stress when 8-9 hrs a day I want to beat my head into a wall and stop the pain. (no I don’t because I am afraid it will make it worse, and if it did I don’t know what I could be capable of doing) I cannot describe the pain, went to a eye doctor even to double check (before the neurologist would ask if I have) and he said everything is perfect, even my contact/glasses script, he even said the BP is somewhat under control!

    It feels like there is a knife or ice pick behind my eye, in my temple, and down to my ear, but it normally starts at the ear working it’s way upward. This article explained it perfectly. The migraines I can control with meds, but the CH’s I cannot yet. I was on lidocaine nasal spray the last time I had episodes 4+ yrs ago (I was lucky as they only occurred at 8pm Friday night for 3-5 hrs). Also the ER actually waited for me every Friday at 7:45pm because they knew what was happening and helped me so much.

    Now ofc I need a neurologist to even get half of this, and he wants to do his own workup. (I’m a military wife so we moved a lot in the last 7 yrs, a lot of records were destroyed that were over 10 yrs old, and the doctors who have copies can’t send them with their’s; it’s like I’m in a catch 22) I have CD’s of MRI’s and CT’s from 06-08, but none of the doctors or radiologists or anyone care to actually LOOK at them, they only read the reports. I’m confused, why not look and see if anything has changed? Why not spend the extra few hrs to see if something is different? At this point I would donate an organ or bone marrow, if a team of doctors would fix me and make me normal again.

    I honestly cannot take this pain much more, I’m reaching my breaking point and it’s even pushing the BF of 11 yrs away (yes my 17 yr old’s father). He’s gotten to a point he won’t drive me to doctors (even if I can’t drive cause I can’t see straight, and I can’t drive at night at all because I see lights and glare during and after for HOURS) the only time he will drive is if I have to go to the ER so I’m avoiding even that because I’m tired of being an inconvenience to him. (he lost his mother and had to watch her suffer, I think this is triggering something in him. along with his ptsd, and can’t handle it so I can’t blame him for not being there for me.)

    What worked 20 yrs ago after I had my kid (Dr told me of a apothecary in 98, off the books, who worked with marijuana oil form that didn’t get you high, but said it would work; it didn’t) I noticed sleeping with oxygen worked the best out of everything, but I used lidocaine nasal spray before bed so it didn’t wake me up. (You might wake up but go back to sleep with another spray and forget you even did it) This also worked 4-5 yrs ago, but the tanks are expensive even with insurance and I had to be on them for months to keep the episodes from reoccurring.

    I started steroids a few days ago for the lump, it isn’t helping the headaches but it is making me sleep thru them, yes waking up with them, but I’m able to actually sleep more than 3-4 hrs a night.(first time in over a month and a week) I’m on firocet (like I said takes the edge off the migraines) and Imitrex I get 9 a month, they stop the migraines which helped to stop triggering the CH’s but insurance is refusing any more than 9, so I get about 2-3 days relief, using them sparingly.

    I’ve been on dozens of pain killers (on 2 for crps/fibromyalgia both low doses cause my body accepts minimal doses of medicine for almost everything even my HBP) nether help with the CH’s or migraines and like I said the ER gave me high doses of Pain meds and anxiety meds but still the pain was insane…during the LP it made the migraine worse, but after calmed it down a little for a day or 2.

    I feel like a guinea pig, I feel like none of the doctors hear me, or because they don’t know me don’t trust me. I’ve had my pain doctor for over 5 years, they are the only ones who confirm that I’m honest and open about what is wrong. I’m extremely intelligent so I am not looking online and self diagnosing, I’m not a doctor, I am putting my life into their hands, but some of these doctors don’t even know half what I know, which is extremely sad. If a patient has been suffering for 20 yrs with something and a new symptom arises, the least I’d expect is for them to know that the previous doctors taught me a lot about my condition, and maybe they could spend some free time if they cared to read up on it or ask for advice.

    Does anyone know of any doctors in northern south carolina shore area, who know anything about this? I’d prefer a team, but that feels almost impossible. Yes I take vitamins and other supplements that are supposed to boost my immune system, and help with other conditions, and I don’t like to just take something “just because” they “think” it might work. I like to know what I’m putting into my body. I eat a mostly clean diet with italian foods. Since the Migraines and CH’s started I had to go from drinking water to drinking tea a lot, to help with the caffeine intake, which has only helped a LITTLE. Without any caffeine it’s almost 1000000 times worse. I’ve literally changed everything in my life to try to help myself (non-medically) and no it isn’t helping, but I’m still doing it in hopes to flush out my system of toxins. I don’t drink alcohol, or do drugs, I don’t do anything that can hurt my body in any way.

    I will try to get a sleep study done if one of the 6 specialists can order it, I had a dog bite my face as a kid, and since have always snored a lot…and I’ve always been somewhat of an insomniac (extremely light sleeper, can’t get back to sleep easy if woken up too) which might mean something or maybe has something to do with this, I just don’t know. All I do know is I’m running out of time on what I know I can physically endure. So I’m asking again, if anyone can help, you would be saving me in more ways than 1.

    Sorry this is so long and I’m even asking for help from strangers, but I don’t know what else to do, I’m just praying that something changes soon and someone hears my cry for help.
    If you did read this thank you for even taking the time to care enough to hear my story. I hope the other people who commented are doing well, and maybe what has helped me in the past can help them a little. Just because it didn’t help me doesn’t mean it cannot help you and in 20 yrs a LOT has changed.

  • PorschesMom
    3 years ago

    Neece, You describe what must be absolute hell. I’m so sorry you have to deal with all that pain and lack of support.

    What stuck out for me in your ordeal is the dx of CH during pregnancy. Now you’re 37, within perimenopausal age range. Have you considered looking for a gynecologist or endocrinologist who might understand these types of disorders?

  • ddnben
    4 years ago

    I was diagnosed with cluster headaches and agree completely that there is a difference between migraines and clusters. I get both; my sisters get just migraines (and I don’t mean that derogatorily). I used to say that I would get hit over the head by a 2×4 and have a migraine until I was diagnosed. And nothing touched it. They finally put me on topomax and sumatriptan and between the two, I can manage my headaches a bit better. I’m interested in the melatonin approach since a good portion of mine hit in the middle of the night and wake up with a full blown headache (as I did last night). I take melatonin periodically but will need to look at that research.

  • Serena Jacobson
    4 years ago

    Along with migraines, I too have cluster headaches. I would describe it as; having been hit in the right eye with an axe. Have you or anyone out there, tried marijuana or CBD (which is the part of marijuana that does not make you high)? I have been tempted many times but it’s not legal where I live.

  • Tammy Rome author
    4 years ago

    Before I was diagnosed with sleep apnea and started using a CPAP, I would get both migraines and cluster headaches during sleep that would wake me up. It’s definitely possible and terribly unpleasant. The biggest problem I had with them was that I would not wake up until the attacks were in full swing, making them much harder to abort. Tell your doctor about these nighttime attacks and ask about getting a sleep study to rule out any sleep disorders that might be a trigger.

    http://migraine.com/living-with-migraine/migraine-and-sleep-disorders/

    Keep us posted on what happens.

    Tammy

  • merrie
    4 years ago

    Hi,
    I am wondering if one can get migraines while sleeping? I do often, and was once told that this is not possible. I do see a specialist, although I am not sure I have ever mentioned the sleep migraines to him.

  • PorschesMom
    3 years ago

    I do. I was also told that was a symptom of CH, but that turned out to be wrong. My migraines are nothing like CHs. I DO have cervicogenic headaches that can morph into migraine. These always start while I’m asleep but I’ve gotten some relief by using a body pillow and doing some neck exercises. Still get migraines, but bigger breaks in between now.

    It is truly astonishing how much doctors don’t know about headache disorders and how much knowledge varies from one doc to another.

  • youkayn00b
    4 years ago

    i often have them develop in my sleep, then the pain wakes me up

  • Stephen Rodrigues
    4 years ago

    I’m regular MD who finally understands that all Conventional Medical (CM) diagnosis and treatments are somewhat flawed. But when you combine CM with all the options in the world of Complementary and Alternative Medicine (CAMs) you get a more complete set of therapeutic options.

    IMO, the best intervention match for patients with in long-term pain is to personalized or customized a therapy plan. I put the patient in the center as the coach so they can personally direct the team to address the needs of his/her unique case. The patient and the team working together can customize an “intervention plan” for the pain problem. Since all non-structural pain should be viewed as myofasical pain syndrome, proactive and preventive actions up front will circumvent the possibility of long-term pain syndromes.

    Self care is critical with wellness programs, sleep hygiene, stress management, stretching, yoga, Pilates and massage. Complementary care offered by a Physical Therapist, Chiropractor and Active Tissues Release. Add in vitamins and Minerals, esp with oral magnesium and topically by soaking in Epsom Salts.

    Acupuncture, GunnIMS, dry/wet needling, trigger point injections and prolotherapy are critical in really deeply rooted cases.

    Any interventions for the long-term pain should NOT include high risk medications, nerve blocks, ablations or conventional open surgery, because of toxicities and high failure rate.

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