Today, October 7th, is the awareness day for trigeminal neuralgia and other facial pain conditions. I have had facial pain for several years now and I don't think I can begin to explain how severe the pain can get at times. I get very sharp, electric-shock-like pains, particularly in my temples and along my jaw, in addition to vice-like aches in my forehead and cheeks.
Soon after the pain started, I was started on Gabapentin and referred to a Maxillofacial surgeon, with a tentative provisional diagnosis of Trigeminal Neuralgia.
Once seen by the Maxillofacial surgeon I was sent for an MRI scan to rule out a cerebellopontine angle tumour and look for compression of the trigeminal nerves. It came back clear.
The conclusion was reached that my facial pain and related symptoms are, in fact, likely to be as a result of my ME/CFS, which makes sense as I get nerve pain elsewhere.
Around the same time I was developing increasing problems with the sensation in my face, in particular problems with crawling sensations and tingling in my lips and tongue.
My dose of gabapentin was adjusted up and down a few times. Higher doses sedated me and caused horrible overwhelming exhaustion, low doses didn't really work sufficiently.
Eventually (about 6 months ago) I decided to take the plunge and change medications, both because my pain wasn't managed brilliantly, and because I had concerns that the gabapentin could be contributing to my abdominal pain.
I changed to Pregabalin (Lyrica) and eventually got up to the maximum dose (lower doses didn't work sufficiently, but each increase was vile, sending me into a very ill, semi-comatose state for a week each time). My pain seemed to be under control for a short while.
Recently though, my pain has flared up again and I suffer with headaches, stabbing pains and tooth pain on a daily basis. I have had a few occasions where I've been absolutely writhing in agony, it's awful.
I think people would think my facial pain is a minor inconvenience compared to my other problems, but when it's bad, it's far more than that. It affects my quality of life significantly and the severity during shock-like episodes is certainly as severe as any pain I get resulting from my other conditions. The pain is all-encompassing and simply cannot be ignored. I quite often literally gasp with the sudden intensity of the pain. And then it goes as quickly as it came.
I'm on epilepsy medications to dampen down my nervous system to try to control the facial pain. I wouldn't risk the side effects and interactions with other meds if the pain was bearable without, but it simply isn't.
Many people have lengthy, unpleasant (unnecessary) dental treatment prior to diagnosis. Most sufferers are on daily medications. People go through deep brain surgery or have treatments to damage the nerves involved to try to relieve the pain. If you look up Trigeminal Neuralgia, you soon come across the fact that it's sometimes known as 'the suicide disease' due to the high rates of suicide in this patient population (mainly before effective medications were available, but some even now) due to the pain's severity and the condition's unpredictability. These conditions are not trivial. It's not a case of a bit of a headache or a bit of toothache. The conditions are, without doubt, often life-altering.
Thanks for reading and please do help spread the word about these conditions.