I was a happy and thriving 18 year old college going student until one day I woke up to the worst pain I have felt in my entire life. It was on one side of my face, near my temple. My first thought was, well, it’s probably just one of those migraines that everyone gets, so I just laid down, skipped class, and had paracetamol, which is all I had at the time.
However, to my horror, this episode of pain did not just happen once. This was when I learned that I suffered from cluster headaches and, unfortunately, had to deal with this terrible pain for the entire early part of my adult life.
It happened every day for around 30 minutes, for four weeks at a time, almost always around December and June. I would also experience other symptoms such as drooping of the eyelid, swelling, and radiating pain into the rest of my head and down my face on one side as well. I learned that these were all symptoms of a very rare type of headache known as a cluster headache that only 0.2% of the population gets.
Fast forward almost 21 years and the frequency of cluster headaches has gone down and for the last decade I get them every 2 years for 8 weeks and sometimes multiple times a night. Since I’ve gone through childbirth, trust me when I say, without exaggeration, that the pain of cluster headaches is much worse. This is why they’re sadly nicknamed ‘suicide headaches’.
The strangest things about the headaches is how severe they are but they stop as quickly as they start. So, like clockwork, after 8 weeks I am pain free and fully healthy for another 2 years, often forgetting I am even a sufferer.
For me, I did not go the medication route for treatment. I found significant pain relief from combining oxygen therapy and complimentary therapies such as acupuncture and Face Yoga. I have also found great up to date information from one of the leading cluster headache foundations in the UK, known as OUCH UK.
As you may well know, most headaches have an environmental trigger such as food or stress. Despite being super healthy and having a plethora of wellbeing hacks under my belt, cluster headaches are different as they aren’t down to anything I do or don’t do, they are in fact something beyond my control (more detail on this coming up). Although I know that Cluster headaches are something I was born with and something I will most likely die with, having the combination of breathing in pure oxygen during an attack and all the wellness techniques which I use, and of course teach, I feel at peace with them.
What Are Cluster Headaches?
I was lucky enough to have Dr. Peter Goadsby is a neurologist specialising in the diagnosis and treatment of headache disorders and the patron and chairman of one of the UK’s leading cluster headache charities, OUCH as a guest on The Face Yoga Expert Podcast. He provided the following information:
A cluster headache is a primary headache that belongs to a class of headache disorders called Trigeminal Autonomic Cephalagies. The term “primary” here refers to the fact that cluster headaches are independent disorders and not a symptom of another illness, nor are they caused by anything else. According to him, the reason these headaches are called cluster headaches is that they come in clusters.
Cluster headaches cause debilitating pain that is unilateral and generally concentrated around the eye sockets and temple area—often radiating to the ear, forehead, jaw, and even neck.
Currently, there is no known cure for this lifelong condition.
Current treatments, both preventive and abortive, are focused more on managing symptoms and providing pain relief. During a cluster headache attack, patients also complain of experiencing one or more of the following symptoms: Watering and redness of the eye on the affected side
- Blocked or runny nose
- Swollen or drooping eyelid
- Miosis (pupil constriction)
- Facial flushing and sweating
- Severe agitation and restlessness
- Sensitivity to light
Cluster headaches often occur in 2 forms, episodic and chronic.
- Episodic cluster headache attacks can occur daily for weeks or even months and then stop suddenly, only for the cycle to be repeated again after a gap.
- Chronic cluster headaches are more regular and have a shorter remission period of fewer than four weeks in 12 months.
Episodic attacks of cluster headaches are much more regular in timing and often occur at particular times of the year. Episodes can last anywhere from 15 to 180 minutes, up to 8 times in a day in untreated patients.
Patients usually experience cluster headaches after their daytime nap and within half an hour to ninety minutes after falling asleep. For this reason, napping during the daytime is prohibited in patients with cluster headaches.
With time and of course age, the intervals between the attacks get longer. Going up to 18 years in some patients. However, the severity and duration of the attacks themselves also get longer.
Cluster Headache Causes
The cause of a cluster headache is not known as yet. However, clues can be derived from the clinical features of the disease. For example, the disease’s two major distinguishing characteristics include distribution of the pain along the pathway of the trigeminal nerve and same-sided symptoms such as facial flushing and sweating.
However, perhaps the most important clue for the origin of the disease is the timing of its attacks and a disruption in the levels of certain hormones produced by the hypothalamus part of the brain.
Since these attacks are in tandem with the circannual (yearly body clock) and circadian rhythms (daily clock of the body), this suggests some dysfunction in the body’s internal master clock called the suprachiasmatic nucleus, which lies in the hypothalamus of the brain.
There is also evidence that suggests cluster headaches have more of a genetic component to them. Hence, such headaches are thought to be innate. However, the exact genes that cause this dysfunction are still unclear, and further research is being conducted into the matter.
What Are the Treatment Options for Cluster Headaches?
There are two main types of treatments for cluster headaches, preventive and abortive (immediate painkilling).
Within the abortive cluster headache treatment category, the first-line medication we have is injectable sumatriptan. Sumatriptan comes in tablet form as well. However, it is simply not strong enough to abort all severe cluster headaches. The injectable variety acts much faster and more efficiently.
The other abortive cluster treatment is oxygen therapy, which can be broken down to demand valve oxygen therapy and standard high flow oxygen therapy. High concentration oxygen can successfully abort a cluster headache attack within 8 to 10 minutes in individuals suffering from cluster headaches without significant side effects. However, oxygen therapy is only useful in about 70% of individuals.
Preventive treatment has two types as well, short term preventive and long-term preventative treatment. The most notable drugs used in short term preventive treatment are corticosteroids. However, their use must be carefully monitored because of the numerous side effects this class of drugs entails.
In long term preventive treatment, the most notable drug used is Verapamil. However, it must also be carefully monitored due to its potential adverse effects on cardiac health.
Other medical treatment options include gamma core therapy and surgery. Gamma core is a handheld device that provides transcutaneous stimulation of the vagus nerve. This helps in the treatment of cluster headache attacks and prevents frequent bouts of cluster headaches.
There are two types of surgery for cluster headaches: deep brain stimulation and the placement of an occipital nerve stimulator implant (ONSI). However, surgery is only recommended when all other treatment options have been exhausted.
A huge thank you to Professor Goadsby for this information. When we chatted he agreed with me that anything that a sufferer can do to help the mind feel calmer and the body to feel healthy will help with the psychological aspect of dealing with severe, and in some cases, untreatable pain, is very useful. My favourites to help me feel strong and calm at at peace with this condition are face yoga, acupuncture, breathing, meditation, Yoga, chiropractic and self care wellness techniques. Certain face yoga techniques, such as massage of the jaw and neck area as well as acupressure points for pain relief are all part of my routine.
I do hope this article has been helpful and insightful. If you are a sufferer too I send you so much love and please remember, you aren’t alone.