A man who was declared dead three times has revealed his hell battling a rare condition dubbed ‘suicide disease.’
The 47-year-old, who goes by Josh and has kept his real name anonymous, said he feels like he has a death wish.
His first brush with death began even before he was born when his pregnant mother mixed toxic chemicals in a bid to end her own life and ‘almost died in the bathroom.’
Separately, a few months later, Josh was stillborn, not breathing for 15 minutes before eventually being revived.
And not long after, he had his third brush with death after his brother packed his nose and mouth with baby powder to get him to stop crying.
The man said he was found ‘blue and cold’ and needed to be revived for 20 minutes, but regained consciousness with no lasting effects.
At six, he choked on the skin from a piece of chicken: ‘By the time the nurses found me, I wasn’t breathing and had no pulse, but one of them kept trying CPR well after they were told to stop. They saved me.’
Josh described surviving being trampled by a horse and being the lone survivor of a car accident that killed his uncle and two cousins.
After each incident, doctors said he was ‘lucky to be alive,’ but years later, Josh was diagnosed with a condition that leaves users in so much pain they want to be dead.
A user on Reddit detailed how they cheated death three times and was diagnosed with trigeminal neuralgia, a condition so painful it’s been dubbed ‘suicide disease’ (stock image)
At 22, he was diagnosed with trigeminal neuralgia (TGN), ‘a disease so painful [doctors said] I’d probably kill myself.’
He revealed his experience in an anonymous Reddit Ask Me Anything (AMA).
Dubbed ‘suicide disease’ because the excruciating pain makes people want to end their lives, the disorder causes sudden pain so severe Josh compared it to ‘being burned alive.’
Despite the irony, his near-fatal incidents and condition are not related. The man, however, said he can’t help but feel death is coming for him.
He and his doctors believe his TGN was triggered by a sinus infection he came down with.
While most sinus infections, also called sinusitis, can be treated with home remedies and antibiotics, his spread to his trigeminal nerve, the largest cranial nerve in the body.
They believe this led to the rare neurological condition that causes intense pain on one side of the head.
He compared his pain to ‘being burned alive, freezing to death, electrocuted, stabbed everywhere, flesh peeled off, nose hairs plucked.’
While the exact prevalence is unknown, experts estimate there are 10,000 to 15,000 new TGN cases of varying degrees diagnosed each year in the US.
The cause is not always clear, though it can be due to a compressed blood vessel near the trigeminal nerve or conditions like multiple sclerosis that damage protective coating around cells.
The trigeminal nerve is a large three-part nerve in the head that sends signals from the brain to parts of the face – and vice versa.
The pain often comes on suddenly and without warning, but it can be set off by triggers as small as shaving, touching your face, eating, brushing your teeth, putting on makeup, the weather and smiling, according to the Mayo Clinic.
Trigeminal neuralgia causes severe pain on one side of the head. The unnamed Reddit user compared it to ‘being burned alive, freezing to death, electrocuted, stabbed everywhere, flesh peeled off, nose hairs plucked’ (stock image)
Mount Sinai describes TGN as ‘unpredictable bouts of severe pain that makes everyday living unbearable. Every aspect of life becomes shrouded in currents of unrelenting shocks to the face, causing both physical and mental anguish.’
For Josh, the pain started in his cheek and spread to his eyelid, lips, and jaw.
The poster was diagnosed with an acute form of the condition, as they only suffered from attacks three times and have been symptom-free for 12 years.
But in all three instances, he was placed in a coma because the only way to relieve the intense pain was sedation.
He wrote: ‘There are weeks I don’t have beyond bits and pieces past the first several hours. Several hours was more than enough. I do my best to not remember them.
‘I haven’t had any problem in 12 years, so, hopefully, that part of my life is over.’
For people whose TGN does not go away so easily, the most effective treatment, according to Mount Sinai, is a posterior fossa exploration (PFE) procedure.
During this surgery, a doctor removes bone from the base of the skull, called the posterior fossa, to relive pressure on the trigeminal nerve.
One study found 87 percent of patients experienced complete pain relief and 78 percent still experienced relief at five years after undergoing a PFE.
One patient who underwent this procedure is Claudia Hirsch, who was experiencing 100 episodes of intense pain per day from her TGN, and for whom medication had stopped working.
Just four days after undergoing the surgery, according to a case writeup from Mount Sinai, Ms Hirsch was pain free.
She said: ‘I don’t even think about it. I don’t think about pain… I don’t worry about what it will feel like to get in the shower or what will happen if I brush my teeth… it’s like a load of cinder blocks have been taken off my back.’
