The pain of cluster headaches: 'At times I’ve felt like I was on the verge of a breakdown’
A new injection which is claimed to help prevent the pain of migraines could be a game-changer for sufferers. Here, our writer Brett Campbell talks about a rarer form of the condition - cluster headaches - and how he copes with it.
I first started suffering episodic cluster headaches 10 years ago and no-one has ever been able to tell me why. They remain a medical mystery. Every September since 2007 I have endured a torturous cycle of three to four attacks which occur every day for nearly two months — they can be completely debilitating at times.
The first time I ever got one was terrifying.
I woke up in the middle of the night with an unbearable pain concentrated in my right eye — it felt like someone had stabbed me with a screwdriver and was rattling it around in my eye socket.
I knew it wasn’t normal but I didn’t know what to do so I slowly made my way downstairs in a frantic search for painkillers, each step causing the intense pain to pulsate around my head.
The relief I felt when I found paracetamol and Ibuprofen tablets in the medicine drawer was short-lived.
I took two of each and made my way back to bed expecting the pain to dissipate but it only got worse and worse.
It was relentless agony, I thought I was going to pass out.
I writhed in bed for three hours which felt like an eternity — I was pulling my hair and pacing the floor at regular intervals but there was no escape from the excruciating pain.
Everything seemed to make it worse, especially moving, but it was impossible to be still.
The piercing pain became increasingly intense and every time I thought it couldn’t possibly get any worse, it did. Then it stopped as suddenly as it had started and I was able to go back to sleep.
Pain is a strange thing because it’s difficult to remember. I went to work and started to think maybe I had overreacted to a bad headache, but I had an unwelcome reminder when it returned at lunchtime.
I left work straightaway and went to an optician. I thought maybe I needed glasses or that something was in my eye causing irritation because my eyelid was red and slightly swollen. But the optometrist was unable to find anything wrong.
An eye doctor in the Royal Victoria Hospital, Belfast, and the emergency doctor in Newtownards couldn’t explain it either.
At 7pm I suffered my third attack of the day. I was completely exhausted afterwards and felt like I hadn’t slept in weeks.
Within hours of going to bed that night, I woke up after just a few hours and endured a tormenting repeat of the night before.
The cycle continued for eight weeks and has returned every autumn since.
They’re quite rare migraines which affect one or two people in a thousand and are most common in males aged in their 30s and 40s, with smokers at higher risk of getting them.
But I was only 21 when they started and although I smoke now, I didn’t then.
I led a very healthy lifestyle and only consumed alcohol — another trigger — on very rare occasions.
They are nicknamed ‘suicide headaches’ because they can cause suicidal thoughts in sufferers and, although I have never gone down that road, I completely understand it.
There is a real sense of dread between the headaches and I find it impossible to relax. All I can do is anxiously wait in anticipation of the pain to return, which it always does, day after day in the same predictable pattern.
During one early episode, I drove to a health and wellbeing clinic in Belfast and begged a therapist to book me in for a head and back massage and, despite being fully booked, she promised to fit me in. I think she felt sorry for me and I was extremely grateful — but even that failed to provide any relief.
I eventually got an appointment with my GP who asked me if the pain was accompanied by any other symptoms, so I mentioned that I had noticed my nose was inconsistently runny in addition to having a swollen eyelid — that’s when I first heard about cluster headaches and learned that a red eye and runny nose are tell-tale signs.
However, I wasn’t officially diagnosed until I saw the neurologist a few months later and had an MRI scan.
I was given a prescription for a high dosage of steroid-based tablets and sumatriptan nasal sprays, a course of treatment I have relied on throughout every September and October since then.
The steroids interrupt the cycle and stop the headaches for a few days, but once I start weaning myself off them they return — but with less regularity and diminished intensity.
I worry about taking sumatriptan for prolonged periods because it can cause serious health problems and blotchy skin, but it’s like a miracle spray so it’s impossible not to take it during an attack — it causes the pain to completely cease within 15 minutes by narrowing the blood vessels.
Now, I’m 31 and I don’t know any other effective way to manage the pain.
So the latest news that a jab could not only manage pain but actually prevent it in the first place is to be welcomed.
I would take anything which has been proven to reduce the number of headaches — it makes more sense to tackle the root cause rather than wait to treat symptoms. Given the worry I face over not having tablets when a cluster headache strikes, a preventative jab would be a game-changer for me and others who suffer too.
When I take a headache there’s also a permanent numbness throughout the duration of the cycle, it feels like bruising on the entire right side of my brain.
I start to lose interest in doing anything enjoyable pretty quickly and stop making plans because I know it’s likely that I will have to cancel or end up leaving early and I can’t be bothered having to explain myself.
I worry people will just assume I’m being dramatic so it’s much easier to stay in.
I think people just think a sore head is a sore head, and I don’t blame them — you really need to get a cluster headache in order to understand the extreme level of pain.
My biggest fear, and it’s real fear, is running out of medication or misplacing it, which I have done on several occasions. I’ve turned the house upside down during desperate searches only to realise I left it in the car.
Usually I have no choice but to endure the first attack of each cycle because it always strikes without warning in the dead of night — it’s why they are also referred to as alarm clock headaches.
I then make immediate contact with my doctor to get the medication. There are times when I run out of nasal sprays and don’t have time to contact my doctor, which means I have to buy the tablet form in the chemist. It’s almost £8 for two tiny tablets — that quickly adds up when you need them every day.
I’ve also had a few run-ins with cautious pharmacists who are wary of selling it over the counter.
In October this year I ran out of nasal sprays during a weekend trip to Galway. I went to a chemist to buy tablets but was informed that they can only be acquired with a prescription in the Republic of Ireland, so I had no choice but to leave.
I jumped into the car and rushed to Newry in order to get the tablets, I couldn’t bear the thought of enduring another headache and considered a four-hour drive a small price to pay.
This combination of treatment has allowed me to minimise the impact of the headaches on my day-to-day life which would be devastating otherwise.
I wouldn’t be able to function at all for two months of the year without it, which would have a severely detrimental impact on my social and professional life.
Even then there are other implications because while the medication can reduce the severity of the cycle and reduce the length of each attack to 15 minutes of unbearable pain, fatigue and depression can set in quite quickly.
I still wake up in the middle of the night and although I’m pain-free within minutes I lie awake for hours because my adrenaline has started pumping.
Then I spend days wallowing in self-pity. I’ve felt at times that I was on the verge of a break-down.
It’s only when the cycle draws to a close that I realise the extent of the misery it has caused, but once the numbness goes away I know that the nightmare is over which means I get my life back.
I am once again in a period of remission which has yet to last longer than a year, and while it is possible that they will completely stop one day, it is likely that I will suffer cluster headaches for the rest of my life.
According to the Migraine Trust it is one of the most painful conditions known. I’m just glad I have learned how to manage it.
I’m also extremely thankful that I don’t suffer from chronic cluster headaches where each cycle exceeds one year with pain-free periods lasting less than a month.
I’m not sure how anyone copes with that. It would completely ruin your life.
Symptoms of a cluster headache
People often feel restless and agitated during an attack because the pain is so intense, and they may react by rocking, pacing, or banging their head against the wall.
One of the following associated symptoms is usually present:
- a red and watering eye
- drooping and swelling of one eyelid
- a smaller pupil in one eye
- a sweaty face
- a blocked or runny nostril
Causes and treatments of the condition ...
The exact cause of cluster headaches isn’t clear, but they’ve been linked to activity in a part of the brain called the hypothalamus.
Treatments for cluster headaches:
Over-the-counter painkillers, such as paracetamol, aren’t effective for cluster headaches because they’re too slow to take effect.
Three main treatments are:
- sumatriptan injections — which you can give yourself up to twice a day.
- sumatriptan or zolmitriptan nasal spray — which can be used if you don’t want to have injections.
- oxygen therapy — where you breathe pure oxygen through a face mask.
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