Trigeminal Neuralgia – The Worst Pain Known To Man?

My Story

I first suffered from Trigeminal Neuralgia (TN or tic douloureux) in 1995 when I was 28. At this time I did not have a clue what the pain was that I was suffering from. I was in the RAF and had just returned from a tour of duty in the Falkland Islands. During this period I had the odd twinge, but in no way could this be described as pain. On my return the pain increased, so I went to see many dental specialists in the RAF. I was treated with root canal treatment, Temporomandibular Joint Disorder. For this the dental technicians made me a couple of splints for my bottom teeth. These were 1 and 2mm in thickness. I wore them for approximately 6 months, but unfortunately they made no difference, as I was not suffering from it. The intestinal pain affected an area on the right hand side of my face from the chin to below the right ear.

None of the treatment that went on for about 18 months proved successful because at this time they did not know what I was suffering. The pain got so intense and my job did not help as I worked on nights as a radio operator. Part of my job was to wear head phones, these only made the problem worse. Talking was difficult, eating was hard and life was not too pleasant. Temazepam did no good either, the pain was the worst I had ever suffered.

The turning point in my condition came a year after leaving the RAF when I discovered the Internet. I went to Google and typed in 'intense facial pain' and waited for the results to come back. I found all sorts of links, but one of the sites listed stuck me. I went there and the symptoms described were very similar to what I was suffering. The pain is best described as a bolt of lightning shooting through one side of the face. The pain is intense, sometimes in my case going on for a few minutes at a time. There was very little that could be done to halt the onslaught. Direct pressure over the area had some affect, but did not take the pain away.

The triggers for the pain can be as mundane as brushing your teeth, a breath of wind or simply talking. Winter and its icey winds were a lot worse than summer warmth. But by far the worst offender is eating. Eating can be a nightmare, during the worst episodes it was not uncommon to lose weight. I would not waste my time eating things like apples, lettuce and other food that didnt contain any calories. While to most people these foods are fine, to a TN sufferer like me these foods are best avoided, otherwise you will lose weight. When driving a car even the road surface would have an affect on whether the pain kicked in or not. Even when there was no pain, it was sitting there in the background waiting for the trigger to release its latest onslaught of ultra pain – imagine tooth ache, only 10 times worse! – honest.

Having found what I thought was the problem I was suffering from I took my findings to Goole Hospital. The Ears, Nose and Throat specialist confirmed what I thought and he prescribed me Tegretol. Almost immediately I felt some relief from the pain. Initially my dosage was kept low until I was on the high end of the dosage. The problem I found with Tegretol was memory loss, and a general feeling of 'fuzziness'. I could not come off them as the pain was too intense, but they were becoming less and less useful to my condition. Sometimes, dependent on the dose I took that day, and the amount of food I ate I had a feeling of slight overdose – dizzy is not the word. It only happened a couple of times, and it was not pleasant.

The specialist at Goole referred me to a Consultant Neurosurgeon at Hull Royal. Here I had an MRI brain scan in the Hull Royal Scan Unit, this confirmed, and made a better indication of what was going on. Armed with my scans I then went to see one of the neurologists at the hospital. He thought it would be a good idea if I was admitted as soon as possible for an operation to numb the pain. I was admitted into hospital on the Monday morning a month later.

Radio Frequency Coagulation Operation

The operation I was going to have was a Radio Frequency Coagulation. This is administrator