ME & MY OPERATION: Zapper that can banish ‘suicide headaches’

ME & MY OPERATION: New Zapper could banish the agony of cluster headaches which can feel like a ‘red hot poker in the eye’ for three hours

• That’s the term given to those who suffer so badly it’s almost beyond endurance
• Andy Rodgers, an IT consultant from County Durham, aged 50, was one of them 
• He underwent a cutting-edge procedure designed to combat cluster headaches

THE PATIENT

Six years ago, out of the blue, my headaches started. Within weeks, they were happening every day and affecting every aspect of my life.

I developed a constant ache behind my right eye and down that side of my face, which would flare up into aggressive attacks lasting from 30 minutes to — in extreme cases — two days. They made it impossible to function — I just had to sit it out in absolute agony. 

It wasn’t a migraine as triggers such as light or sound didn’t bring it on, and there was no pattern to their length or severity. Soon, I was taking the maximum number of paracetamol and ibuprofen every day — eight of each — but they didn’t dent the discomfort.

Do you suffer from them? During an attack, the patient may feel agitated, their heart rate might slow, they could have high blood pressure and lose balance or faint

My wife, Susan, told me that during a bad attack, it looked as if I was having a stroke. So in June 2013, after a year of pain, I went to my GP.

I was prescribed the powerful painkiller amitriptyline, but it made me feel like a zombie. The headaches were dulling my mind and impacted on my work. I was exhausted.

Sadly, I realised the pain was more severe after exercise so I had to give up cycling and swimming. In 2016, I abandoned the drugs and was prescribed an oxygen mask. Although the cause of my headaches was unknown, it was thought oxygen might lessen pain by reducing blood flow to my brain. Although this shortened the attacks, the agony continued.

Later that year, brain scans ruled out a tumour and eventually, last November, I was referred to Dr Ashish Gulve, a pain specialist, at James Cook University Hospital. He diagnosed cluster headaches — waves of severe headaches, or, in my case, a chronic headache along with frequent severe bouts of extreme pain.

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No one really knows what causes cluster headaches, which is frustrating. So Dr Gulve decided to try some unusual treatments. First, a nerve ‘block’ was injected into the back of my head, then an electric current was put through a large needle inserted into the back of my head for up to 45 minutes, both to interrupt the pain signals.

When these didn’t work, Dr Gulve mentioned occipital nerve stimulation. He said it involved an implant under the skin at the back of my head to stimulate the occipital nerves with electrical impulses, sent out via wires threaded down my back to a tiny battery-powered generator below my ribcage.

The occipital nerves, which run over the top of the head, may be connected to headaches and the electrical impulses interfere with the pain signals.

Dr Gulve warned this treatment was new and there was no guarantee it would work for me. But I was prepared to try.

Gender divide: Cluster headaches affect around one in 1,000 people, more men than women

I had the operation under general anaesthetic in May, just before my 50th birthday.

Two weeks after the operation — during which time my headaches continued — I went back to have the implant activated. I was told to increase the settings preceding and during an attack, using a hand-held controller. I have the implants switched on almost all the time, including at night, in case of an attack.

I’m aware of the rapid impulse through my neck when it’s on, and a hardly noticeable ache in the background, but it’s a small inconvenience — my headaches now last around five minutes, and I’ve gone from four attacks a day to just seven in the past four months.

I was living with pain that was almost unbearable — now I’ve got my life back and I’m utterly grateful.

THE SPECIALIST

Dr Ashish Gulve is a consultant in pain management at James Cook University Hospital in Middlesbrough.

Cluster headaches affect around one in 1,000 people, more men than women. Attacks come in quick succession, and I’ve heard them described as like a red hot poker in the eye. They may have no obvious trigger, but can run in families. Attacks last from 15 minutes to three hours and can occur eight times a day.

During an attack, the patient may feel agitated, their heart rate might slow, they could have high blood pressure and lose balance or faint.

Although not life-threatening, it’s sometimes referred to as a ‘suicide headache’ because the debilitating effects can make patients feel suicidal.

WHAT ARE THE RISKS? 

 One in 30 patients develops an infection after any implant, requiring a replacement.

Patients cannot use the device while driving and cannot have an MRI scan.

‘Many options for cluster headaches are not long-term solutions,’ says Dr Robin Kulranjan Correa, a pain specialist at BMI The Meriden Hospital in Warwickshire. ‘This device would be brilliant as the patient can control it when they need it and not rely on lots of medication.

‘Although it’s an invasive procedure, the long-lasting benefits make it worth it.’ 

We think increased blood flow to certain parts of the brain is the cause. Since the late Nineties, occipital nerve stimulation has been available. The idea is that continuously disrupting the pain signals by stimulating the nerves over several months changes the balance of chemicals in the brain, reducing the excessive blood flow. Two leads are implanted under the skin at the base of the head where the occipital nerves begin. They are connected to a battery-powered neurostimulator, which sends a low-level electric current.

Previously, there wasn’t a specific device for cluster headaches. Instead, doctors re-purposed back pain devices. But in February, I started using the new AnkerStim. It stimulates the branches of the occipital nerve — known as the trigeminocervical complex — a key pain pathway in patients.

The implant’s flexible leads fit more easily around the skull, and have tiny hooks to secure them, and are less likely to break as there is less tension on them.

Surgery takes 60 to 90 minutes. A 2cm incision is made in the base of the skull where two leads are threaded under the skin to the occipital nerves.

Next, a 4cm ‘pocket’ is made on the side of the chest or top of the buttock. Into this is placed a 3.5cm neurostimulator, attached to the occipital nerves.

Two weeks later, the device is activated. Initially patients are advised to use it 24/7 until they see significant improvement. After this, they need to activate the stimulation only when they feel an attack coming.

We became the first hospital in the UK to use it. So far we have fitted it into ten patients, but I hope it will be rolled out to help many more people who suffer these life-wrecking headaches.

The operation costs £15,000-£25,000 to the NHS.

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