Life with the World’s Worst Known Medical Pain

Jessica’s Story:Jessica has TN

Mum of two Jessica Bird, 29, from Northamptonshire, has Trigeminal Neuralgia, a rare brain condition which causes sudden pain attacks in parts of your face.

With no official diagnostic testing, and very little treatment available, living with what sufferers call ‘TN’ is far from easy.

“The pain attacks just come from nowhere and are incredibly difficult to deal with,” says Jessica, who has two children aged six and nine.

“It’s like having an amputation with no anaesthetic. It hurts when you try to lie down or even cry.”

TN pain attackPictured (left to right): Jessica pain free and Jessica suffering a pain attack.

Most attacks only occur for a few seconds or minutes, but Jessica has had to endure episodes lasting several days.

“Before I was referred to a neurologist I had a dreadful attack which left me bedridden for five days. Luckily I have a really supportive husband and family around me and I’m on much stronger medication now which is helping.

“It’s been classed as the ‘suicide disease’ and the ‘world’s worst known medical pain’ – and once you have an attack it’s easy to see why.”

 

Trigeminal Neuralgia Causes

Trigeminal Neuralgia is where the blood vessels wrap around the trigeminal nerve in the brain. This compression causes great pain as the nerve is linked to your head and jaw.

“If the compression is at the top of the nerve it affects all three parts, which unfortunately is what doctors think I’ve got,” says Jessica.

In cases like Jessica’s there is no particular cause of the condition. However, some people find that dental treatment, operations, car accidents and any situation where your head takes a nasty bump can cause TN.

 

The Dreaded Diagnosis

As the condition is so rare, doctors know very little about Trigeminal Neuralgia, which makes diagnosis very difficult. Pains in your ears and teeth are one of the first symptoms, but this could be down to a simple infection or dental problem.

“I was back and forth for two years – my GP kept thinking I just had an ear infection,” says Jessica.

“I’ve been on so many different types of antibiotics that my body is now actually immune to them.”

 

Coping with Everyday Life

Even simple things like cooking the dinner, going for a walk or doing the school run can be a challenge for Jessica.

“Opening the oven or freezer door and even putting on a t-shirt can cause an attack. I also need to wrap up like an Eskimo when taking my children to school as the wind in my face can cause the pain the flare up.

“Just the other day I was helping my daughter build a pirate ship from Lego, but had to stop because I could feel the pain starting again. It’s really difficult, but you have to take note of what causes an attack and try and cope as best as you can.”

 

Medical ID is Fundamental to Living a Normal Life

Jessica believes medical ID jewellery is crucial for conditions like TN as very little is known about the attacks and medication.

heart style ID necklace

“Having an ID bracelet or necklace makes you feel safer when trying to live a normal life,” says Jessica.

“I chose an elegant necklace with ‘Trigeminal Neuralgia see card’ engraved. I keep the ID card in the plastic wallet in my purse so it’s easy to find in an emergency.”

Jessica’s children also know about her necklace and card, so they could tell someone if she were to have an attack when out and about.

Pictured right: Jessica’s heart necklace

“I would never expect my husband or children to remember all the medication I’m on, so at least if medical staff asked them, they could just say ‘it’s all on her card’.

“In my opinion medical ID is more than just a handy accessory, it’s fundamental if you want to live your life.