A woman who has suffered a constant headache for eight years and endured up to 100 excruciating stabs of head pain a day has revealed how she battled through to fulfil her dream of becoming a mum.
Rebecca McDonough, 34, from Carnforth in Lancashire, had been married to Sarah, 37, for just three months when her headaches first started in October 2012.
After numerous tests and scans, doctors eventually diagnosed her with both hemicrania continua, which causes a constant headache, and short-lasting unilateral neuralgiform headache attacks (SUNHA) – causing stabbing pains – on the right side of her head and face.
McDonough describes the SUNHA headaches, which occur daily and can affect her for several hours at a time, as like "being stabbed repeatedly in the head".
But she says the hemicrania continua is more like a normal headache, with pressure behind her right eye.
“While the SUNHA is more extreme, destructive and disabling, the hemicrania continua means I never get a moment free of being in pain, even if it is just annoying,” she says.
“I deal with the pain a lot better now than I did in the beginning," McDonough adds. "I went through years of being very depressed and anxious about the implications of never being cured or it getting worse.
“It does ruin your life if you let it – but I just have to get into the right frame of mind. And with the support of my family and friends, I now know how to deal with it.”
Recalling the first time she experienced a headache McDonough explains: “I was at the computer in my office, on my own, and I suddenly felt this burning, stabbing pain on the skin around my eye, and a rash came up.
“It turned out I had shingles, so I had to be sent home.
“Not long after, I felt like I had this electric shock in the right-hand side of my head.
“It went away within seconds, so quickly I thought I might have imagined it.”
Over the next few days the headaches escalated, coming in clusters every few minutes and sometimes lasting for hours, leaving McDonough in excruciating pain.
“It is the most painful thing I have ever felt, including childbirth. Because it is short-lasting, it is manageable until it becomes a cluster and then it becomes completely unbearable," she explains.
“In those first few months, I was admitted to hospital a few times because the pain was unbearable.
“In those moments, I’d beg doctors to sedate me because I just couldn’t imagine going through any more pain like that.”
Watch: What’s causing debilitating, post-COVID-19 headaches? Doctors have a theory
Initial tests ruled out a brain tumour, then in June 2013, McDonough was sent to The Walton Centre in Liverpool, a hospital which specialises in brain conditions, where more scans and a lumbar puncture test of her spinal fluid led to a professor diagnosing her with SUNHA in December.
Months later, following further tests McDonough was also diagnosed with hemicrania continua.
Forced to give up her job and her Masters degree, McDonough barely ventured outside in case she had an attack.
Doctors tried all kinds of therapies to treat her conditions, including transcranial magnetic stimulation – where magnets are used to stimulate nerve cells in the brain – injecting anaesthetics into her neck and skull, oxygen therapy and anti-epileptic drugs, but nothing worked.
But things took a turn for the better when her mum, who is a hypnotherapist, put her in touch with a colleague who specialised in pain management in March 2014.
“It was at that point I decided I had to accept I was never going to get better and I had to find a way to live my life and stop making decisions based on my headaches," she explains.
Watch: Toddler gets headache after drinking too many sugary drinks.
With her therapist helping her to grieve for the life she once had, McDonough started her master’s degree in education and society, and got a part-time job as an admin assistant.
But it wasn't easy leaving the house.
“I had to develop coping techniques to manage the social anxiety of going out by myself," she explains.
“If I had an extended cluster of headaches in public, people would stare at me and even try to ring ambulances because I couldn’t really speak.
"Now, I carry a card to explain my condition because it is an invisible disability, but I don’t really use it a lot. I try to always have some kind of escape plan so I can go somewhere more private and ride it out.”
Having relocated to Lancashire, the couple decided to try and fulfil their dream of becoming mothers. On Valentine’s Day in 2018, Sarah’s egg was fertilised and implanted into McDonough's womb and in late March they discovered it had been a success.
“We did talk about whether I’d be strong enough to go through the pregnancy and labour, but it was so important to me to carry the baby,” McDonough explains.
“Sarah felt if I could handle that many years of being unwell, I could handle anything.”
After being induced, McDonough spent two-and-a-half days in labour before Jamie was born on 5 November 2019, at the Royal Lancaster Infirmary.
“It was quite hard for the midwife to work out what was a contraction and what was a SUNHA attack,” McDonough reveals.
“The SUNHA pain was worse than the pains from labour until the very end, when Jamie got stuck – then that was worse.
"But being able to hold Jamie in my arms, was the most amazing feeling.”
The couple are now enjoying family life together and hope to explore the option of having another child.
Because of the risks of having a cluster attack while looking after their one-year-old, McDonough has become the breadwinner of the family, with Sarah leaving her job to become a stay-at-home mum.
McDonough now works for Lancaster University, leading an administrative team. Due to her condition, she works flexible hours and the government pays for a taxi to take her safely to and from work as part of the Access to Work scheme.
She is excited about research by pharmaceutical company Beckley Psytech to explore the effects of psilocybin, a psychedelic agent, for treating SUNHA, which McDonough hopes will raise awareness about the condition.
“One of the most isolating things about SUNHA is that not only is it invisible, but no-one really understands it, even so many medical professionals," she explains.
“I’m not expecting a miracle cure, but it would be great if more people knew about the condition.”
Dr Fiona Dunbar, chief medical advisor at Beckley Psytech, said: “SUNHA is a crippling condition for which there is very limited research and no currently approved medications.
“We believe that psychedelic medicine has the potential to make a significant difference to the quality of life of patients suffering with this disease, and are very excited to receive approval for our clinical trial and to further investigate the safety profile and efficacy of psilocybin as a treatment.”
Additional reporting PA Real Life.