Warning: This article contains details and references to suicide

When Lauren Evans told her doctor she was suicidal because of the “pure agony” of her chronic migraine, she was told she was being dramatic.

Lauren, 29, was seven when she got her first migraine and went on to have them regularly – by the time she was 24, they were happening every day.

“People need to understand that a migraine is a full body experience,” she said.

Migraines are often misunderstood as “just a headache” despite being a neurological condition that can leave people unable to work, socialise or function in everyday life, according to a migraine expert.

The Welsh government said it was working to improve access to neurological services.

Lauren, from Swansea, said: “Although the ‘headache’ is in the head it can affect body temperature, digestive system, speech, light sensitivity, limb numbness, ability to walk and carry out a journey, brain fog, sleep, neck pain, mood swings, visual aura, sound sensitivity, cravings, vertigo.

“I would wake up daily either in pain or worried about when it would start.”

She also spent a huge amount of time researching triggers and spent “hundreds on various things just to see if that would help” – from vitamins to chiropractors.

Lauren was training to become a biomedical scientist in the NHS but the lights and overstimulation of Singleton Hospital were so intense she had daily migraines.

She added that she often felt dismissed by colleagues who implied she was faking her condition but was lucky that her manager was supportive.

Some colleagues would accommodate her by turning off the lights, she said, but others said: “If you don’t get your annual leave approved, you can just say you’ve got a migraine and you won’t come in.

“That was so untrue. So you’re battling, not just your physical health. You’re battling all the mental side that comes with it as well.

“If I went home every day at the sight of a migraine, I would never be in work. There wasn’t a day without pain and if there was, I’d be waiting for it.”

To manage her symptoms, Lauren changed her working hours, starting at 08:00 BST and finishing at 16:00 so she could get home to take medication, but was still “in agony”.

“I couldn’t make plans because I knew I’d be suffering in the evening. My weekends would basically be spent recovering,” she said.

Lauren said frequent attacks affected her relationship and left her feeling isolated: “It was a dark time. It got to the point where I was like, ‘I can’t do this for another year’.”

Lauren said she went back to the doctor to try to find another option.

“I was like I’ve tried quite a lot of things. Is there any referrals I can have?

“I actually disclosed that I’m starting to feel suicidal and I’ll never forget the words out of her mouth because I burst into tears immediately – she said: ‘That sounds very dramatic, doesn’t it?’

“I told her I had written a note to my family to say I couldn’t live with the pain anymore.”

She was referred to a neurologist, but four years on and she still has not been able to speak to them.

Lauren saw a crisis team in December, was signed off work for a month and her migraine attacks began to ease.

She decided it was time to leave her biomedical scientist career and now has a job at an insurance firm, and feels like a different person.

“I have never done so many hobbies in my life,” she said.

“Jewellery making, painting… and running 50k in September for a charity.”

Her new medication is working well, but she added: “If it got bad again, I honestly wouldn’t know where to turn to.”

Swansea Bay health board said it was “very sorry to hear of the patient’s concerns” but could not comment on individual cases without consent and “would welcome the patient getting in touch with us so we can discuss this further”.

It said it had a “specialist headache clinic that covers conditions such as migraine, which GPs can refer people to when appropriate”.

Experiences like Lauren’s are all too common, said Katy Munro, senior GP headache specialist at the National Migraine Centre and host of the Heads Up podcast.

“There are various barriers to people getting good help for migraine,” she said.

“What we’re trying to get away from is that preconception that migraine is just a very bad headache.”

Munro said headaches were a symptom of migraine attacks, but so too are “visual disturbances, nausea and vomiting, sometimes numbness and tingling, sometimes abdominal pain, sometimes dizziness”.

They are also a spectrum condition, she said, from episodic – meaning people have mild or rare attacks – to chronic where they have more than 15 days a month affected by migraine symptoms.

“If you have a migraine attack and you put up with it and then you have another one and put up with it, your brain actually gets more irritable,” she said.

That means the migraines become more regular and can become chronic if effective treatment is not applied.

The first barrier to treatment, Munro said, is that a lot of people believe they are “normal headaches”.

She said people should always get repetitive headaches checked out by a GP.

The next barrier is that GPs often just note down the headaches as a symptom rather than diagnose migraine.

The third barrier is the medication that was offered in the past, though this has improved in the last five years, she said.

“We need better education throughout the whole of society about how significant migraine is to people who suffer from it.”

The Welsh government said it recognised the effect migraines can have on people’s lives and that guidance was available to help NHS staff diagnose and manage conditions.

The UK government said National Institute for Health and Care Excellence (NICE) had “clear guidance on the diagnosis and management of migraines, and we expect healthcare professionals to follow it and deliver high-quality care to all patients”.

If you or someone you know has been affected by the issues raised in this story, information about available help and support can be found via BBC Action Line.