Trigeminal neuralgia

[cc75]

Hi, my name is Chris. I've recently been diagnosed as having trigeminal Neuralgia, sometimes the pain is stupidly unbearable, sometimes the condition is described as the suicide condition, I can completely understand this!! Sometimes I think my life is over, I can't live with this condition, I have never known pain like it!!! I'm taking carbamazepine which helps reduce the pain but sometimes I wonder. This is the condition from hell as far as I'm concerned!!

[Racing]

My pain is also horrendous, I get through it knowing that it will ease. I also put a flannel cloth in my mouth to soak the saliva because it is to unbearable to gulp or move my mouth at times, maybe this could help you also, hope you are doing OK at the moment. I have had a few today but have been worse. Take care Gaynor.

[Anonymous2017]

Hi everyone. Was diagnosed with TN on both sides of my face in 2017 at 15 years old, am currently 17 turning 18 in a couple months. I First experienced the pain around September sort of time, when it woke me up and i thought it was a filling come lose. Went to the dentist who wanted to do an x-ray but it was so painful. Eventually got one and there was no sign of anything, it was recommended i go to my GP in case it was synapses. GP informed me that it was trigeminal neuralgia and was prescribed tegretol. Unfortunately, my GP informed me to take too high a dosage of 2 tablets, 3 times a day. As a result, I slept for a week straight, only woke up to eat and take more pills. During the time I was awake i could hardly keep my eyes open, was dizzy and disoriented, couldn’t see properly, slurred my words, was confused and couldn’t stand up on my own. After my mum contacted the GP he insisted he said 1/2 tablet 3 times a day, so had to completely come off that, which caused me to be in the pain I was in before, and took cocodomal to ease the pain. Once I had the correct dosage and was in less pain I was sent for MRI’s in fear of it being something like a tumour, as we had read they could be connected, as there have been people in my family with tumours. Luckily, nothing was found. I continued with tegretol, building up the dosage when I felt necessary until it wasn’t working effectively anymore. I was prescribed Gabapentin, which I had to increase slowly, this helped with the pain for slightly longer than a year, but the side effects were too much for me to handle, I was in tears relatively every day. I’m at the point now where for the past year I’ve been attending a children’s hospital in London and receiving the greater occipital nerve block, which is an injection in the back of my head, every 12 weeks that acts as a pain relief. As a result, I am on no medication other than this and have only experienced 5 attacks in the last 12 months, which were only in the space of three days, and luckily were right before my injection was due. Sending love to anyone out there who’s experienced this or currently experiencing it, I know it’s not easy.