What is Cluster Headache?
Cluster headache is often considered the most severe type of headache experienced by headache sufferers. It is often referred to as “suicide headache” because it is so severe, and unfortunately quite a few have committed suicide due to the extreme pain. It occurs in about 1 in 1000 people.
Cluster headache is 1 of 4 types of trigeminal autonomic cephalalgia syndromes (TACs), and is the most common type in this headache family of disorders. The headaches within this headache TACs family share some overlapping features, but have distinct differences, and are all treated much differently. So it is important to first properly confirm the diagnosis of cluster headache and clarify that it is not one of the other TACs.
The ICHD3 criteria classify cluster headache as a strictly one sided headache around the eye, temple, forehead which can last anywhere between 15 minutes up to 3 hours. On the same side of the headache, there is at least one “autonomic feature” which means a tearing and/or red eye, nasal congestion and/or runny nose, eyelid swelling or puffiness, forehead and/or facial sweating, small pupil and/or drooping eyelid. The patient often has a sense of restlessness or agitation and classically paces around the room, sometimes yelling out in pain (in contrast to migraine where the patient often wants to stay still and quiet in bed).
They are called cluster headaches because the headaches come in “clusters”. You may be headache free all year and then all of a sudden develop daily headaches which can occur multiple times per day (sometimes up to 8 times per day). They often occur around the same time every night or during the day, often waking the patient up from sleep around the same time nightly. These cycles of daily frequent attacks can last several weeks to several months. The majority of people who suffer from cluster headaches experience them for about 6-12 weeks each year, most often when the season changes (Summer to Fall and Spring to Summer). It’s one of the most painful types of headaches and is often more intense than a migraine. Let’s take a look at how cluster headaches happen during seasonal changes and what you can do about them.
Cluster Headache vs Migraine and Migraine vs Cluster Headache
There can be a lot of overlapping features between cluster headache and migraine. Specifically, both headache types can be 1-sided and predominant around the eye, temple, and forehead area on 1 side. Both headache types can be associated with the autonomic features noted above, such as sinus symptoms, nasal congestion, eye drooping, red and runny eye. Both headache types can be described as severe and debilitating. Both headache types have been noted in some patients to be associated with nausea, aura, sensitivity to light and sound. Both headache types can wake a patient from sleep. Both headache types flare up during seasonal changes.
However, cluster headache diagnostic criteria (as listed above) and migraine diagnostic criteria have a different set of specific criteria and clinical features. There are several key differences between cluster headache and migraine as noted below.
1st, a cluster headache attack can not go more than 3 hours at max untreated or unsuccessfully treated. In contrast, migraine must last greater than 4 hours untreated or unsuccessfully treated.
2nd, cluster headache can occur multiple times per day (0-8), with complete pain freedom in between attacks. In contrast, migraine generally occurs once in a day rather than separate migraine attacks. With that said, sometimes an abortive medicine may appear to shut the migraine off for a few hours or most of the day, but it may not completely shut off electrically in the brain and it can intensify again and appear to return as a separate attack within 24 hours (but still considered the same attack that didn’t fully resolve).
3rd, cluster headache usually comes in discreet cycles of clustered attacks which can last weeks to months as described above, often during season changes (but doesn’t have to have this association). When the cluster cycle is done, the patient has no further headaches (unless they have both migraine and cluster, which some do). Migraine in contrast tends to be more sporadic throughout the year, although can flare up around seasonal changes (typically barometric and weather related).
Why Do Cluster Headaches Happen During the Fall and Spring?
Many people go months or years in between cluster headache cycles. When the cycles start again, they are often tied to changes in the seasons during Fall and Spring. However, cluster headaches can and do certainly come on outside of season changes as well.
Changing influences on the body’s biological clock (hypothalamus) have been a long suspected cause of cluster headache, and still felt to be the most likely culprit. Changes in seasons and daylight savings time changes are often associated with cluster headache flares. Daylight savings time changes impact our sleep patterns. When sleep patterns change, this changes the amount of natural light we are exposed to. For a headache sufferer, this can increase headache patterns. Changes in the amount of natural light that a person is exposed to during sleep-wake cycle changes can influence the body’s normal biological rhythms by influencing the hypothalamus. The result for many patients with cluster headache is that the cluster cycle can then be “turned on”.
Decreased natural light exposure during the Fall season due to a shorter duration of daylight may also impact a person’s sleep cycle. Loss of sleep may reduce endorphins (our natural pain-killers) in the body and also play a role in reducing the body’s pain tolerance threshold. A study suggested that a loss of 1 to 3 hours of sleep per night over a period of a few days could result in a headache that lasted from anywhere to 1 hour or a day. Migraine is also often very sensitive to inadequate sleep, which is a common trigger.
Why Do Seasonal Changes Cause Cluster Headaches
The change in hypothalamic circadian biological rhythms related to changes in sleep-wake cycles and exposure to natural light remain the most commonly suspected cause for cluster headache. However, the exact, true cause of cluster headaches are still not entirely known. Thus, there have been other theories of what causes cluster headaches as well, including changes in barometric pressure, and histamine release related to seasonal allergy changes.
There are a lot of headache triggers that happen during the Fall season including decreases in humidity and temperature which are associated with increases in barometric pressure. When you begin getting into Spring, Summer and warmer months, there tends to be more of a decrease in barometric pressure. These barometric pressure changes are classic migraine triggers for many patients. However, a possible relation to cluster headache has also been suggested. The exact barometric pressure that will lead to cluster headaches will vary depending on the individual. For example, a pressure of 1003 to 1007 hPa was found as a migraine trigger point in an NIH study. A specific pressure change of 6 to 10 hPa (the specific drop in air pressure) was also identified as a range in pressure drop that could cause a cluster headache or migraine.
Seasonal allergies have also been suggested to possibly play a role in migraines and cluster headaches. Increased allergies during season changes leads to increased histamine levels and sinus symptoms for some people. Deep within the nasal passageways lies some nervous system structures including the olfactory nerves (which allow you to smell), and important headache and facial pain related nerve ganglia, such as the SPG (sphenopalatine ganglia). For example, the SPG is sometimes blocked (SPG block) by numbing medications to abort various types of headache and facial pain including cluster headache, migraine, and trigeminal neuralgia.
Seasonal Affective Disorder also could be linked to various types of headaches that one experiences throughout the year. Certain people may experience a predisposition to anxiety and depression due to seasonal changes, and this may lead to headaches and insomnia.
Symptoms of Cluster Headaches
Seasonal cluster headaches can start at any age, however, most people tend to start experiencing these between the ages of 20 to 50. They tend to affect men more than women (in contrast to migraine which is the reverse). To review, some of the symptoms of a cluster headache can include:
- Redness, swelling, and watering/tearing around the eye on the side of the head where the cluster headache is occurring.
- A stuffed/congested and runny nose on the same side of the headache.
- Pale skin and sweating.
- Drooping of the eyelid and small pupil size on the side of the headache.
- Sense of restlessness or agitation during the attack.
Some of the other headaches that a person might experience include anxiety, and waking up at night. Chronic cluster headache sufferers may notice an intensification of their headaches during the change to fall. If you have cluster headaches occurring for one year or longer without remission, or with remission periods lasting less than 3 months, you fall into the chronic cluster category, which is a small minority of cluster headache patients. If you have cluster headache free breaks of 3 months or more, it is considered episodic cluster headache.
How To Treat Cluster Headaches
There are some very basic things that you can do if you suffer from cluster headaches during seasonal changes. Avoiding alcohol and smoking will help reduce the onset of cluster headaches for some. For example, alcohol is a classic trigger for cluster headache when a patient is in a susceptible cluster headache cycle. Sometimes even the smell of alcohol can trigger an attack. When the same person is outside of their cluster cycle, alcohol does not trigger the attack. So for those that drink alcohol and are unsure if their cluster cycle is done (if they are susceptible to an alcohol trigger), consuming alcohol will often let them know! The hormone melatonin can help regulate your sleep cycle, helping you rest better. Some studies have suggested melatonin levels are lower during a cluster cycle. The dose ranges from 5-15 mg taken about 2 hours before bedtime.
Otherwise, the key cluster headache treatments involve having a good abortive (as needed) treatment for when an attack happens, and a good preventive treatment to lessen the frequency and severity of attacks. The following treatments are most commonly used for cluster headaches. However, any treatment should be prescribed and discussed with your doctor because you may have other medical conditions which could make some of these treatments dangerous or life-threatening if being used inappropriately. For example, use of triptans or Dihydroergotamine (DHE) in someone with cardiac disease could cause heart attack or stroke. Use of steroids such as prednisone in someone with an ulcer could cause death by gastrointestinal bleed, or in diabetes could lead to diabetic coma and a visit to the intensive care unit due to excess glucose in the blood. Use of oxygen around smoking could cause an explosion. There are many other examples, which is why any treatment should always be provided and discussed first with your regular medical doctor. Also, you should never use treatments given by a friend if they have a similar headache disorder without first consulting with your doctor.
Abortive Treatment For Cluster Headaches
In appropriate patients, as soon as a cluster cycle starts, we often use a course of prednisone. Although this can be adjusted depending on the patient’s medical history, I typically start with 70 mg daily in the morning (since often energizing) with food for 3 days, decreasing by 10 mg every 3 days until off. This often helps to break up and shorten a cycle.
Occipital nerve block on the same side of the headache for 1-3 days can also be effective in breaking up and shortening a cycle.
100% oxygen consumed by a non-rebreather facemask at cluster attack onset at 12-15 liters per minute for 10 to 15 minutes is very effective for many people.
Triptans have been a standard treatment abortively for not only migraine, but also for cluster headache. The difference is that oral triptans are not generally prescribed for cluster headache sufferers because the headache will frequently peak after the medication has had the opportunity to be absorbed by the body. Injectable triptans (Sumatriptan) is the fastest acting, often working within minutes. Nasal spray triptans (Sumatriptan, Zolmitriptan) are the next fastest options.
Dihydroergotamine (DHE) is also a fantastic option, especially if not responding to triptans or having multiple attacks daily (DHE can last longer). DHE hits the same triptan receptors in the brain, but hits a much wider spectrum of other receptors in the headache and migraine pathways as well. It also lasts much longer than triptans.
Intravenous (IV) forms of DHE have historically been the most potent and effective, but require coordinating infusions in an infusion center or receiving them in the ER (if you’re lucky though since most ERs do not give IV DHE).
There is a great new nasal spray DHE option called Trudhesa which works significantly better and easier to use than older versions of DHE nasal spray such as Migranal. Trudhesa gives IV levels of DHE within 30 minutes, and lasts just as long (often through 48 hours)! So I look at this option as having IV potency DHE treatment now at home with the new Trudhesa DHE nasal spray.
Self injection subcutaneous or intramuscular injections can also be done at home if one is comfortable with drawing up the medicine in a syringe and then injecting the medicine.
Neuromodulatory devices can also be effective in aborting a cluster attack. GammaCore is a vagus nerve stimulator device that you can carry with you and it is FDA cleared for the abortive treatment of cluster headache. It is the only device currently with this clearance and indication. SPG (sphenopalatine ganglion) blocks can also be done in a variety of ways between the office or under sedation with pain management. A small surgically implantable SPG microstimulator (implanted through the roof of the mouth) activated by a remote controller held to the cheek for 15 minutes at the start of a cluster attack showed significant benefit as an abortive treatment in medically refractory chronic cluster headache compared to a sham group. That same study also showed a significant preventive benefit in 1/3rd of patients with an average attack frequency reduction of 83%. A 2nd study using this SPG microstimulator in chronic cluster headache patients also showed significant pain relief and pain freedom at 15 minutes compared to the sham group, and again showed an additional preventive benefit. Although this device looks very promising, it has unfortunately been held up and blocked in regulatory processes and red tape. Hopefully we’ll see this revived and available as an option for chronic cluster headache treatment in the future.
Preventive Treatment For Cluster Headaches
Verapamil is often considered the gold standard of cluster headache prevention to try to stop the frequency of attacks and shorten the cluster cycle duration. It is typically started at the onset of a cluster cycle and titrated up to a higher dose depending on how the cluster attacks are responding, and how the patient is tolerating it. This is a blood pressure class of medication, so needs to be used cautiously in those with normal or low blood pressure, or if taking other blood pressure medications. Clinically, it tends to work better in the immediate release form taken three times daily as opposed to the once daily long acting version. I typically start with 40 mg or 80 mg (depending on baseline blood pressure) three times daily and increase by 40 mg every 3 days (assuming no dizziness, lightheadedness, excess fatigue, etc.) until helping or 120 mg three times daily. Although for some patients, much higher doses are required, up to 320 mg three times daily. Checking an EKG is recommended when making higher dose changes to ensure no heart block, and dosing should never be increased without direction and close monitoring from your prescribing doctor. Longer-term use of this prescription drug can be considered for chronic cluster headache or high frequency cycles through the year.
Emgality (Galcanezumab) is one of the four available CGRP monoclonal antibodies. These are all made for migraine prevention. However, Emgality is unique in that it is currently the only FDA approved medication for prevention of episodic cluster headache. Notably, Emgality dosing is different for cluster headache prevention (300 mg injection per month) compared to migraine prevention (120 mg injection per month).
Other types of preventative treatments for cluster headaches include anti-seizure medications, typically starting with Divalproex (Depakote) or Topiramate (Topamax). For more refractory cases, Lithium is sometimes used as well.
For some patients (especially chronic cluster headache), unfortunately even these options do not help them and they turn to alternative treatment options. One option that has gained a lot of exposure is the use of tryptamines at sub-hallucinogenic dosing (“microdosing”) including psilocybin (from mushrooms), lysergic acid amide (LSA), and lysergic acid diethylamide (LSD). In fact, there are also growing published studies suggesting benefits of these types of treatments. There is a group called ClusterBusters where these types of treatments are discussed further. Obviously, there are potential legal ramifications of these treatments since they are all federally illegal substances, but for some patients their cluster headache is so severe and refractory that they will do anything for relief.
Getting Help For Your Cluster Headaches
Cluster headaches can impact your ability to complete tasks at work and can require you to take more sick leave, as referenced in one study. Cluster headaches can also have an impact on your relationships with family and friends. If you develop cluster headaches your primary care physician might be able to find a viable treatment option or refer you to a headache specialist or neurologist to help you find a solution for your cluster headaches.
This is an absolutely miserably severe headache disorder! You are not alone. However, you need to make sure to get to the correct type of doctor (optimally, a headache specialist) to get these headaches under control as fast as possible and stop the suffering. DO NOT GIVE UP!!!!!
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