A woman who has suffered a constant headache for eight years says she endures up to 100 excruciating extra stabs of head pain a day.
Rebecca McDonough, 34, from Carnforth in Lancashire, had been married to the love of her life, Sarah, 37, for just three months when her headache first struck like “an electric shock” 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.
Rebecca explained the SUNHA headaches, which occur daily and can affect her for several hours at a time, are like ‘being stabbed repeatedly in the head’ – but the hemicrania continua is more like a normal headache, with pressure behind her right eye.
She said: “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.”
But determined to not let it stop her living her life, Rebecca, now 34, gave birth to son Jamie in November 2019 – dealing with a two-day labour at the same time as a SUNHA attack.
And now Rebecca, a student programmes officer, and Sarah, a former operations manager, are looking hopefully to the future and would like to have another child.
Rebecca said: “I deal with the pain a lot better now than I did in the beginning. 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.”
Having met Sarah on the day of her graduation from Lancaster University in 2009, Rebecca married her in a civil partnership ceremony in July 2012 and the couple were enjoying the first few months of wedded bliss when the headaches first struck that October.
At the time, Rebecca was 26, was co-ordinating diagnoses and treatments for cancer patients in the NHS, and was set to start a master’s degree through work.
Until then, she was like most people and had only had the occasional headache.
She recalled: “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.”
She added: “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 Rebecca in excruciating pain.
She said: “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 continued: “Speaking to other people who’d had shingles, I knew this was not normal.”
Within the next couple of months, the hemicrania continua began on the right-side of her brain, meaning doctors did not diagnose the two as separate conditions for a long time.
Rebecca recalled: “In those first few months, I was admitted to hospital a few times because the pain was unbearable.”
She continued: “In those moments, I’d beg doctors to sedate me because I just couldn’t imagine going through any more pain like that.”
Initial tests ruled out a brain tumour.
Then in June 2013, Rebecca 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.
But she said: “Even the professor was not sure what caused my headaches.
“His hypothesis was that the shingles may have caused damage somewhere and led to SUNHA – but even he cannot prove that theory.”
Months later, further tests gave Rebecca her hemicrania continua diagnosis.
She hit rock bottom when she was forced to give up her job and her course, and she barely ventured outside in case she had an attack.
Doctors at The Walton Centre tried all kinds of therapies to treat her conditions, she said, including transcranial magnetic stimulation – where magnets are used to stimulate nerve cells in the brain – injecting anaesthetics into her neck and skull, and anti-epileptic drugs.
But nothing worked. When the couple moved to Chester, Cheshire, in 2014, Rebecca was discharged as a patient.
She said: “They had run out of ideas of how to treat me, so at that point I lost all hope.”
And in February 2014, she suffered her worst ever bout of SUNHA, that lasted seven hours.
But she began to turn a corner when her mum Claire, who is a hypnotherapist, put her in touch with a colleague who specialised in pain management in March 2014.
Rebecca recalled: “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 – like not going back to work until they ‘cured’ me.”
With her therapist helping her through the ‘grief’ for the life she once had, Rebecca started her master’s degree in education and society in 2015 at the University of Chester and got a part-time job as an admin assistant there the following year.
Leaving the house was her first hurdle to overcome.
She said: “I had to develop coping techniques to manage the social anxiety of going out by myself.
“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.”
She continued: “There is no treatment or medication that does anything for my pain. I just focus on telling myself it will come to an end, keep calm and deal with it in that way.”
And having relocated to Lancashire, Rebecca and Sarah decided to fulfil their dream of becoming mothers. On Valentine’s Day in 2018, Sarah’s egg was fertilised and implanted into Rebecca’s womb and in late March they discovered it had been a success.
Rebecca said: “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.”
She went on to say: “Sarah felt if I could handle that many years of being unwell, I could handle anything.”
After being induced, Rebecca spent two-and-a-half days in labour before Jamie was born on November 5, 2019, at the Royal Lancaster Infirmary.
She said: “It was quite hard for the midwife to work out what was a contraction and what was a SUNHA attack.”
She continued: “I had one for the first part of the labour and it made it so hard.
“The SUNHA pain was worse than the pains from labour until the very end, when Jamie got stuck – then that was worse.”
But she added: “When I was able to hold Jamie in my arms, it was the most amazing feeling.”
Because of the risks of having a cluster attack while looking after their one-year-old, Rebecca has become the breadwinner of the family with Sarah leaving her job to become a stay-at-home mum.
Rebecca 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.
Slowly but surely, she is working towards completing her masters, with plans for another baby to complete her family in the pipeline.
Rebecca is also ‘excited’ that research is being done by pharmaceutical company Beckley Psytech to explore the effects of psilocybin, a psychedelic agent, for treating SUNHA.
And the company will explore the use of wearable technology to track the condition rather than pain diaries, which Rebecca said ‘meant she had to keep dwelling on the pain’.
While not taking part in this trial, she is happy research is being done to shed light on this mysterious condition.
Rebecca said: “I’m quite optimistic, but I learned a long time ago not to live in hope of these things working.
“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.
“I’m not expecting a miracle cure, but it would be great if more people knew about the condition.”
Dr Fiona Dunbar is the Chief Medical Advisor at Beckley Psytech. She 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.”