One woman who has had constant headaches for eight years says she experiences up to 100 excruciating additional headaches every day.
Rebecca McDonough, 34, of Carnforth, Lancashire, had only been married to the love of her life, Sarah, 37, for three months when her headache first hit like an “electric shock” in October 2012.
After numerous tests and scans, doctors finally diagnosed her with both Hemicrania Continua, which causes constant headaches, and short-term unilateral neuralgiform headache attacks (SUNHA), which cause sharp pain, on the right side of her head and face.
Rebecca explained that the SUNHA headache, which occurs every day and can last for hours, is like “being stabbed repeatedly in the head” – but the Hemicrania Continua is more like a normal headache with pressure behind the right eye.
She said, “While the SUNHA is more extreme, destructive and disabling, the Hemicrania Continua means that I never have a moment free from pain, even if it is just angry.”
Determined not to be stopped from living her life, however, Rebecca, 34, gave birth to son Jamie in November 2019 – a two-day job at the same time as a SUNHA attack.
And now Rebecca, a student program officer, and Sarah, a former operations manager, are hopeful about the future and want to have another child.
Rebecca said, “I’m dealing with the pain a lot better now than I did in the beginning. I have been very depressed for years and concerned about the consequences of never being cured or getting worse.
“It will ruin your life if you let it – but I just need to get myself in the right mood. And with the support of my family and friends, I now know how to deal with it. “
After Rebecca met Sarah on the day she graduated from Lancaster University in 2009, she married her in July 2012 in a civil partnership. The couple was enjoying the first few months of marital bliss when the headache first appeared in October this year.
At this point, Rebecca was 26 years old, coordinating diagnosis and treatment for cancer patients in the NHS, and was about to begin a Masters degree through work.
Until then, she was like most people, with only occasional headaches.
She recalled, “I was alone at the computer in my office and suddenly I felt this burning, stabbing pain on the skin around my eye and a rash appeared.
“It turned out I had shingles, so I had to be sent home.
“Not long after that, I felt like I had that electric shock on the right side of my head.”
She added, “It went away in seconds, so quickly I thought I had imagined it.”
Over the next few days, the headaches escalated, appearing in groups every few minutes and sometimes lasting for hours, leaving Rebecca in excruciating pain.
She said, “It’s the most painful thing I’ve ever felt, including giving birth. Since it is short-lived, it is manageable until it becomes a cluster, and then it becomes utterly unbearable. “
She continued, “When I talked to other people who had shingles, I knew it wasn’t normal.”
Over the next few months, Hemicrania Continua began on the right side of her brain, which meant doctors did not diagnose the two as separate conditions for a long time.
Rebecca recalled: “During those first few months I was hospitalized a few times because the pain was unbearable.”
She continued, “At those moments, I would ask doctors to calm me down because I just couldn’t imagine having more pain like this.”
Initial tests ruled out a brain tumor.
Then, in June 2013, Rebecca was taken to the Walton Center in Liverpool, a hospital specializing in brain disease, where further scans and a lumbar puncture test of her spinal fluid resulted in a professor diagnosing her with SUNHA in December.
But she said, “Even the professor wasn’t sure what was causing my headache.
“His hypothesis was that the shingles might have caused damage somewhere and led to SUNHA – but even he cannot prove that theory.”
Months later, further tests on Rebecca revealed the diagnosis of Hemicrania Continua.
She hit rock bottom when she was forced to quit her job and course, and she hardly ventured outside in case she had an attack.
Doctors at Walton Center tried all kinds of therapies to treat their conditions, including transcranial magnetic stimulation – which uses magnets to stimulate nerve cells in the brain – injecting anesthetics into the 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 on how to treat me, so I lost all hope at that point.”
And in February 2014, she had her worst SUNHA attack, which lasted seven hours.
But she turned a corner when her mother, Claire, a hypnotherapist, introduced her to a colleague who specialized in pain management in March 2014.
Rebecca recalled, “At that point, I decided that I had to accept that I would never get better, and I had to find a way to live my life and stop making decisions based on my headaches – like I would again going to work when they do has “cured” me. “
With her therapist, who helped her through “grieving” for her life, Rebecca began her Masters in Education and Society at the University of Chester in 2015 and got a part-time job as an administrative assistant there the following year.
Leaving the house was the first hurdle she had to overcome.
She said, “I had to develop coping skills to cope with the social fear of going out alone.
“If I had a large number of headaches in public, people would stare at me and even try to call ambulances because I couldn’t really speak.
“Now I carry a card to explain my condition as it is an invisible disability, but I don’t really use it. I always try to have an escape plan so I can go to a more private place and drive it out. “
She continued, “There is no treatment or medication that can relieve my pain. I just focus on telling myself it’s going to end, keep calm and deal with it that way. “
After Rebecca and Sarah moved to Lancashire, they decided to pursue their dream of becoming a mother. On Valentine’s Day 2018, Sarah’s egg was fertilized and implanted in Rebecca’s womb and at the end of March they found it had been a success.
Rebecca said, “We talked about whether I was strong enough to survive pregnancy and labor, but carrying the baby was so important to me.”
She continued, “Sarah felt that if I could deal with so many years of being unwell, I could deal with anything.”
After being induced, Rebecca spent two and a half days at work before Jamie was born on November 5, 2019 at the Royal Lancaster Infirmary.
She said, “It was pretty hard for the midwife to figure out what was a contraction and what was a SUNHA attack.”
She continued, “I had one for the first part of the job and it made it so difficult.
“The SUNHA pain was worse than the pain from labor until the end when Jamie was stuck – then it was worse.”
But she added, “When I was able to hold Jamie in my arms, it was the most amazing feeling.”
Due to the risk of a cluster attack while caring for her one year old, Rebecca has become the family breadwinner and Sarah has left her job to become a home mom.
Rebecca now works for Lancaster University and leads an administration team. Due to her condition, she is flexible and the government pays a taxi to get her to and from work safely as part of the Access To Work program.
Slowly but surely, she is working to complete her masters, with plans for another baby to complete her family in the pipeline.
Rebecca is also “excited” that pharmaceutical company Beckley Psytech is conducting research to investigate the effects of psilocybin, a psychedelic, on the treatment of SUNHA.
And the company will be exploring the use of wearable technology to track the condition, rather than pain diaries. Rebecca said this meant she had to keep dealing with the pain.
Although she is not participating in this process, she is glad that research is being carried out to shed light on this mysterious state.
Rebecca said, “I’m pretty optimistic, but I learned a long time ago not to live in the hope that these things would work.
“One of the most isolating things about SUNHA is that not only is it invisible, but that 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 disease.”
Dr. Fiona Dunbar is Chief Medical Advisor at Beckley Psytech. She said, “SUNHA is a debilitating disease for which there is very limited research and for which no drugs are currently approved.
“We believe that psychedelic medicine has the potential to significantly improve the quality of life for patients with this disease and we are excited to receive approval for our clinical trial to further investigate the safety profile and effectiveness of psilocybin as a treatment . “