One woman’s struggle with a rare illness that left her feeling as if her body was “exploding with pain”.
Life was looking rosy. I had just married Dan Dobson, after eight years together, was renovating our house, and had been promoted to a senior role in charge of duty-free outlets.
Then one evening I came home from work and instead of rushing to do ‘damage control’ on Dan’s cooking as usual, I had to lie down. I felt drained, like I’d been unplugged. It wasn’t like me.
I woke up the next morning feeling fine, so I dismissed the previous evening as a weird one-off. But over the next few days my teeth felt peculiar, as if they were crackling with electricity. When it got to my day off I couldn’t eat, barely managed to drink, and throbbing pain developed in front of my ear and into the cheekbone, sinus, around the eye and across my forehead. The whole right side of my face was pulsating with burning pain. Dan, 34, kept bringing me painkillers, but they didn’t help.
I’d hardly slept and left for work at Manchester Airport, UK, the next morning in agony. It was as if my face was exploding with pain, interspersed with what felt like lightning spiking my skin. Speaking made it worse, so I hid in the office, although the computer screen and lighting sent red-hot-poker pain through my right eye.
“You should go to hospital,” the night manager said, but I didn’t. Instead I drove home and tried to sleep, but the pain was unrelenting. Eventually I accepted I had to see a doctor.
In the hospital emergency department I was given codeine, paracetamol, ibuprofen and blood tests to check for infections, although the doctor said she was sure I had trigeminal neuralgia (or TN – see fact box overleaf for more details). She explained that this is a major nerve misfiring, perhaps due to it being compressed.
I was sent home with painkillers and a follow-up appointment. Sobbing, I rang Dan and my mother, Larissa Hamer, who dropped everything to come and look after me. I lay in agony as she and my husband watched on, helpless. It felt like hundreds of electric shocks were rushing through the side of my face. I didn’t know what to do with myself.
The next day I questioned the diagnosis and called my dentist, who told me it was pointless checking my teeth as my symptoms matched TN.
My GP agreed with the diagnosis, and explained that normal painkillers don’t touch neuropathic (nerve) pain and prescribed Gabapentin (also known as Neurontin – usually used to treat epilepsy) and said to slowly increase the dose. I decided to stick with my GP’s care rather than return to hospital.
Despite increasing the drugs, the ‘lightning’ struck my mouth when I spoke, ate, touched my teeth together, drank tea, or for no apparent reason. Excruciating pain could hit every few seconds, stopping me in my tracks. I couldn’t breathe or cry out, I just had to wait for it to pass, and that sometimes took hours. Dan and Mum quickly recognised the signs ffrom my tears.
AAfter five days I was desperate so mmy doctor added Tegretol (also known as Carbamazepine – used ffor seizures and nerve pain) and handed me information about a ssupport group, the Trigeminal Neuralgia Association (TNA).
Two weeks later I could eat soft tthings and drink without being crippled with pain. I was also sleeping better, although I still often jolted awake when my face felt like it was being electrocuted.
Unfortunately the medication made me a zombie. I couldn’t work, so seeing my desperation to regain control, my GP reluctantly agreed for me to stop Gabapentin but continue Tegretol.
Changing drugs was a mistake. Within days indescribable pain meant I was admitted to Salford Royal Infirmary’s neurology department. For eight days I underwent MRI scans, a lumbar puncture and blood tests to check for a tumour, infection, or
‘Excruciating pain hit every few seconds… I couldn’t breathe or cry out, I just had to wait for it to pass’
multiple sclerosis. After ruling out anything other than TN, doctors tried different drug combinations.
Leaving hospital I was drugged-up again, felt dizzy, kept bashing into things and the pain was dulled but still there. Doctors wouldn’t say if I would ever get better, and I read that there was no definite cure. It was seriously depressing.
The drug combination prescribed was maximum doses of Tegretol, Pregabalin (an anticonvulsant), and Nortryptaline (an antidepressant that can ease neuropathic pain).
Side effects left me a mere shell, and six months after the problem started, my life had shrunk to sitting at home with my cats. It wasn’t safe for me to drive,
I couldn’t work and I’d lost my independence. After doing some of my own research, I decided I wanted MVD (microvascular decompression) surgery.
While MRI scans hadn’t revealed nerve compression, I thought it was worth a shot, and my GP referred me to a top neurosurgeon at the UK’s National Hospital for Neurology and Neurosurgery in London.
I had to wait three dreadful months for the appointment, in which an uncle died, my mother had a stroke and Dan and I separated for a while, as the illness imposed an impossible strain on our relationship.
A light at the end of the tunnel
When it was finally time for the appointment in June, an MRI scan showed a vein that could have been touching the nerve, meaning the neurosurgeon thought it was worth trying MVD surgery. It was booked for two months’ time in August – a possible light at the end of the tunnel.
The surgeons removed a piece of skull about the size of a coin from behind my ear to reach the nerve’s control centre (known as the gasserian ganglion). They searched for damage to the myelin sheath – the nerve’s protective coating – or for compression from nearby blood vessels.
The aim was to locate the problem area and insert a tiny ‘buffer’ sponge. However, my surgeons found that the vein they thought was compressing the nerve wasn’t causing a problem, nor was there any other damage. So they manipulated the nerve, aiming to stop it misfiring.
Waking after surgery, I was disappointed at no immediate answer, but still hopeful the problem would ease. I was advised to stay on the drugs until January, then withdraw gradually so the nerve wasn’t shocked.
By January the pain had lessened. I crunched my first apple in more than a year and wasn’t left writhing in agony. I kept reducing the drugs, although each time attacks flared until the nerve calmed.
I’m now just on Tegretol. I’m not cured, but I’m pleased with how far I’ve come, and the nerve may keep improving for two years. I’m breaking through the drug haze – support from the TNA means I feel far from alone, and I’ve started piecing my life back together.
Dan and I have been working on our relationship and we’re thrilled that I’m now pregnant. I see this as a new beginning – perhaps fate has shown me I must take a different path.
Married life began blissfully for Natalie and Dan, but Natalie’s sudden debilitating illness sent shock waves through their lives
Natalie says the medication she took to treat the trigeminal neuralgia turned her into “a zombie”