Man, 29, battling ‘brain-swelling disease’ after terrifying night terrors left him feeling ‘inside his nightmare’
A ONCE fit and healthy man has had his life turned upside down after suffering a terrifying night terror.
Ben Tarver, 29, woke up in the middle of the night on September 11 after experiencing something he described as worse than a nightmare.
He told his partner Liam Nougher, 26, it felt like he was “inside the dream”.
Ben then started having severe panic attacks, headaches, hallucinations, and even seizures, but doctors were unable to figure out what was wrong.
It wasn’t until more than a month later – after a “really severe episode” – that he was finally diagnosed with a rare condition called Anti-NMDA Receptor Encephalitis, which occurs when harmful antibodies attack the brain.
Ben, from Folkestone, Kent, is currently in a catatonic state in London‘s King’s College Hospital, and it’s unclear how long he will remain there for as medics are unsure what is causing his condition.
His partner Liam has been visiting daily but the commute from Kent is proving expensive.
A GoFundMe has been set up to support Liam to allow him to keep visiting Ben while he recovers.
Discussing when the ordeal first started, Liam said: “Ben didn’t suffer from anxiety or seizures but then on September 11, he woke up in the middle of the night from a bad dream.
“But he explained it wasn’t just a nightmare – and felt like he was inside the dream.”
Ben said he had been in a house fire and a woman had been there – also that “it felt like reality”.
Liam continued: “After that, he was scared of going back to sleep in case he went back into this weird reality.”
Ben then began experiencing headaches and panic attacks and went to A&E.
He was given a CT scan and nothing abnormal was found – but then he started having up to 12 panic attacks a day.
Liam said: “On the morning of September 25, he’d already had four panic attacks.
“He looked at me, started talking gibberish, and then his body seized up, he fell to the ground, and started spasming and frothing.
“He was having a seizure.”
In and out of hospital
Liam dialled 999 and was told to start CPR as Ben wasn’t breathing correctly.
Paramedics soon arrived and Ben was taken to hospital where he had more scans – but still nothing worrying showed up.
Doctors told him not to return to A&E if there were further episodes and he was advised that his GP should be contacted after each seizure.
He was also told that paramedics would be able to stabilise him if he had other episodes.
But over the next two days, Ben started having audio and visual hallucinations – and suffered another seizure.
On the third day, Ben awoke in the middle of the night suffering a panic attack – and started talking “gibberish” again and screaming.
He then suffered a third “violent” seizure.
Ben’s heart rate was more than 200 beats per minute – far above a normal resting heart rate of 60 to 100 – so he was rushed to the William Harvey Hospital via ambulance.
Medics desperately tried to stabilise him and had to perform a cardioversion – a procedure used to return an abnormal heartbeat to a normal rhythm.
His symptoms got so bad he didn’t seem like himself at all.
Liam Nougher
Ben’s heart rate lowered and he was told he had to remain in hospital where teams in psychiatry, cardiology, and neurology would spend time looking his case.
Liam said: “Across the nine days in hospital Ben became extremely paranoid and was trying to run away and attack people.
“His symptoms got so bad he didn’t seem like himself at all.”
Liam had to stay at Ben’s bedside 24/7 in case he tried to flee.
He said: “Ben was planning escape attempts and did run away sometimes – until he was pinned down.”
Doctors experimented with different medications to help manage Ben’s symptoms.
After he went three days without having a seizure, he was discharged – but then had another “really severe episode” that night.
Receiving a diagnosis
Ben was transferred to Kent and Canterbury Hospital where he was finally diagnosed on October 15 with Anti-NMDA Receptor Encephalitis.
He was later transferred to the Intensive Care Unit at King’s College Hospital in London, where he has remained since.
Anti-NMDA Receptor Encephalitis is a neurological autoimmune disease which causes inflammation of the brain.
The body creates antibodies against the NMDA receptors in the brain – and these antibodies disrupt normal brain signalling, causing brain swelling or ‘encephalitis’.
The condition is typically associated with tumours – usually tumours of the ovaries as it is more common in women.
However, doctors have been unable to find any tumours in Ben’s body.
Liam said: “His immune system is very strong which is playing against him.
“If he had a weaker one, he likely would have recovered from this as his body would have given up producing antibodies.”
Travelling to see Ben
Liam’s mother has launched a GoFundMe campaign to help with his travel and accommodation costs as he journeys back and forth between Kent and London to visit and support Ben.
She said: “My son-in-law Ben was admitted to hospital in September and has since been diagnosed with Anti-NMDAR Encephalitis, a rare autoimmune condition that affects just one in 1.5 million people.
“Throughout this difficult time, Ben’s partner, Liam, has been by his side, visiting him daily.
“However, Liam’s daily commute from Folkestone to London for hospital visits is expensive, and the uncertainty of Ben’s recovery means these travel and accommodation costs are likely to continue for some time.
“We are raising funds to help cover these travel expenses and provide Liam with some relief during this incredibly challenging time.
“If you can, please consider donating.
“We also understand that this is a tough time of year, so even sharing this page can help spread awareness about Anti-NMDAR Encephalitis, a little-known but life-threatening condition that can strike anyone, at any age.
“Thank you for your support, whether through a donation, a share, or simply your thoughts and prayers.”
Anti-NMDAR Encephalitis
Anti-NMDAR Encephalitis is where the body creates antibodies against the NMDAreceptors in the brain.
These antibodies disrupt normal brain signalling and cause brain swelling, or encephalitis.
Viral infections and tumours are known triggers, but in about half of patients, the trigger is unknown.
It can cause a wide range of symptoms varying in severity, but patients typically start with less severe symptoms, before progressing to a condition requiring hospitalisation.
Common symptoms include:
- Behaviour (paranoia, hallucinations, aggression etc.)
- Cognition
- Memory deficit
- Speech disorder
- Loss of consciousness
- Movement Disorder (rhythmic motions with arms or legs, abnormal movements with the face or mouth)
- Seizures
- Autonomic dysfunction – things like heart rate and digestion are affected
Treatment can vary according to the patient, but may involve tumour removal, steroids or plasma exchange.
Source: Perelman School of Medicine, University of Pennsylvania