My pain pills have been a lifeline, but now I've been told they may increase my dementia risk. Millions face the same dilemma... so what should we do?

It costs just 10p a tablet and, for me, it felt like the medicine that handed back my life. Now I am left asking a far more unsettling question: could the same pill be shortening it? That worry has been circling in my mind for almost a month, ever since an unexpected and alarming call from my GP.

The drug is nortriptyline, a commonly prescribed treatment for chronic pain and part of a wider class of medicines used by more than 2.5 million people across the UK.

Chronic pain, defined as pain that persists for longer than three months, remains one of medicine’s most difficult and poorly understood conditions to manage.

It affects roughly one in three adults — including me, at 30 — and is even more common later in life, with around half of people over 65 living with it.

Despite how widespread it is, genuinely effective treatments for chronic pain are still limited.

Among the better-known options are tricyclic tablets, a group that includes nortriptyline, amitriptyline and desipramine.

Their story is a surprising one. Developed initially as antidepressants, tricyclics began attracting attention in the 1970s and 1980s when doctors observed that they could also reduce chronic pain symptoms.

Since then, their use within the NHS has grown steadily, and today millions of patients depend on these drugs to help them get through daily life.

What makes the treatment so miraculous is that it works on many different types of pain. The NHS prescribes them for everything from nerve pain to inflammatory bowel disease and migraines.

But there’s a catch. There is mounting evidence that long-term use of tricyclics markedly raises the risk of dementia.

And there is also research that shows they raise blood pressure and can trigger weight gain – making heart attacks and strokes more likely.

Ethan Ennals has been taking nortriptyline for two years to treat his chronic back and hip pain

Ethan Ennals has been taking nortriptyline for two years to treat his chronic back and hip pain

I have been taking nortriptyline for two years. But last month my GP called to tell me it was time to stop. He cited the link with dementia as the reason to give them up.

However, that’s far from simple. Quitting could see my chronic pain return, making my life a misery.

And there are even some experts who say, counter-intuitively, that quitting tricyclics could further increase my dementia risk.

So what should I – and the millions of other Britons on these drugs – do?

First, I should explain how I ended up on this daily tablet.

The story starts in 2022 when, seemingly out of nowhere, I began to experience crippling mid- and lower-back pain.

At first it only occurred at night, leading to a loss of sleep. Then, slowly but surely, the pain crept into the day. And that’s when the hip pain began too. This was a shooting agony that ripped down my left leg, leaving me breathless and unable to move.

Sport had defined my life up until that point. I swam, played football and ran. But all of this was lost to the pain. I put on weight, became depressed and contemplated quitting my job.

Then, finally, a breakthrough. Two years after the nightmare began I was diagnosed with axial spondyloarthritis – a form of spinal arthritis that often afflicts men in their 20s.

After some further delay, I was put on adalimumab, an immune-suppressing drug that reduces inflammation caused by arthritis. Studies show the injection, administered every other week and which costs £750 a time, can ease symptoms for most patients.

And it certainly had an effect. Within a month my back pain had all but disappeared.

But the hip pain refused to budge. My specialist explained this was almost certainly a chronic pain cycle – essentially where the body wrongly believes it is still injured and continues to send out pain signals. She explained that there was no way to know when this would subside.

It was a real low point. I wondered whether I would be stuck in agony for ever.

In 2022, seemingly out of nowhere I began to experience crippling mid- and lower-back pain, leading to a loss of sleep, writes Ethan

In 2022, seemingly out of nowhere I began to experience crippling mid- and lower-back pain, leading to a loss of sleep, writes Ethan

Ethan knows he will some day have to come off the pills... but at the same time, he says they undoubtedly changed his life

Ethan knows he will some day have to come off the pills… but at the same time, he says they undoubtedly changed his life

But it was a chance discussion with an amazing GP that turned things around. He recommended the tricyclic tablet amitriptyline. There was a false start, as it left me incredibly drowsy and I couldn’t stick with it. However, he then switched me to nortriptyline, which causes less drowsiness but was certainly not free of side-effects. For one, it left me with terrible dry mouth.

But it was well worth it. Within weeks I felt my hip pain begin to ease.

It was like someone was turning down the dial on the pain. It didn’t go completely, but it was reduced by 30 or 40 per cent – enough that I could begin to exercise again.

With this newfound reduction in pain I began to see a physiotherapist, who gave me a series of exercises to improve the strength and movement of my hip.

Within months, I was running again and lifting weights. It felt like nothing short of a miracle. I never thought I could be healthy again, but today I’m in the best shape of my life and – most importantly – happy.

And it was all thanks to these incredible pills. So why was my GP now urging me to come off them?

Experts say that tricyclics block certain nerve signals in the brain. It’s this that seems to help reduce pain. But over the years there has been growing concern the effect could lead to permanent brain damage.

In 2019, a study, published in the Jama Internal Medicine journal, analysed the health records of about 300,000 patients, comparing those who developed dementia with those who did not. They concluded that patients taking tricyclics were 50 per cent more likely to develop dementia.

It’s not the only risk either. Last year a study published in the Lancet medical journal found that tricyclics are linked to a significant increase in weight and heart rate, as well as a slight blood pressure increase.

These are all issues that raise the risk of heart disease.

It’s certainly a scary thought that the tablets I am taking could be ruining my brain and putting me at risk of heart problems.

As a health journalist, I’m all too conscious of the horrors of dementia – both for you and your family.

My first thought was that I should follow my GP’s advice. After all, a 50 per cent increased risk of incurable brain disease does not sound good. But the more I looked into it, the less convinced I was that this was the right choice.

Firstly, I worried that coming off them could raise my pain levels again and destroy my quality of life. This is a much more tangible risk than a potential disease that may or may not occur later in life.

There are also some experts who argue that living with chronic pain is more likely to lead to dementia than tricyclics.

‘Living with chronic pain carries a dementia risk in itself,’ says Dr Jan Vollert, a pain expert at the University of Exeter.

‘People in pain exercise and socialise less, which are both shown in studies to lower your risk of dementia. So coming off tricyclics isn’t risk-free either.’

Moreover, the link between these drugs and dementia is far from certain.

Studies have observed only the effects of tricyclics on the brains of older people, many of whom already had some memory issues. It is still unclear what effect these drugs have on the brains of young people.

‘It is undeniable that older patients with existing cognitive issues who take these drugs appear more likely to develop dementia,’ says Professor Ian Maidment, a clinical pharmacy expert at Aston University.

‘This might be because patients often report feeling fatigued and confused while on them. So these side-effects might tip patients into dementia.

‘But there is no research that has looked at the effect of younger patients taking them for decades. The theory is that, over time, the cumulative effect on the brain could increase the risk of dementia. I personally wouldn’t want to take them for too long.

‘But it’s just a theory – there’s no real evidence. There’s also no data that shows coming off them reduces your risk of dementia either.

‘This doesn’t mean it’s pointless to stop taking them. But we just don’t have the evidence to say it is for sure.’

Ultimately, I know I will eventually need to stop taking these pills.

Whatever the data shows, every expert I spoke to said the same thing: taking fewer medicines is always better. I happen to agree. It cannot be good for the body and brain to rely on pharmaceuticals for so long. It’s the same reason why I worry about the millions of Britons taking antidepressants and ADHD medication for decades.

But at the same time, these pills undoubtedly changed my life. I regained a quality of living I worried I had lost. In many ways, I believe that these 10p tablets are more important for improving my health than the £750 arthritis jabs.

I’m also still not 100 per cent pain-free. I still get the occasional back flare-up and my hip is always uncomfortable – particularly after a long day of sitting down.

What would my body feel like without the nortriptyline? I have to admit, I’m scared to find out.

The way I see it, there is no evidence that taking them for three years is any more dangerous than taking them for two – so I’m going to stay on them… for now. Maybe next year I will think about reducing the dose, at least. But until then I’m going to keep enjoying my physical health, which I put down, in large part, to these incredible pills.

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