Trigeminal Neuralgia…What on earth is that??

That was my reaction when I was hospitalised in May 2014 with the most severe right sided face pain that I had ever experienced in my life. I had been trying to cope with it all for 3 weeks with strong pain killers thinking it was just another idiosyncrasy special to me and would soon pass. Well it didn’t!  I woke up at 4am on the morning I was taken to hospital by ambulance, as the pain had got to such a level that I was physically sick and running a fever as my body was trying to find a way to cope with it.

Once in Emergency at my hospital ( which I must point out, I am now on first name basis with many of the nurses on the wards due to my frequent flyer status 🙂 ) the doctor in ER came over to me and listened to my story and immediately diagnosed Trigeminal Neuralgia. My Clinical Immunologist, who is my main Specialist looking after my medication and Rheumatoid Arthritis, told me off for leaving things so long before coming to the hospital. He really does care! The Neurologist who saw me once I was admitted, was much more understanding as to why I left it for so long before seeking treatment. I asked him how on earth can I tell, with this idiopathic disease, if a symptom is one that will just go away on its own or one that is more serious? I don’t want to be running to the Dr every 5 minutes saying that something hurts or doesn’t feel right. It’s one of the hardest parts of having such a difficult disease. He completely understood that I didn’t want to waste anyone’s time but all my Specialists again re-iterated that my condition is serious and I am not to let my own independence get in the way of getting treatment. It’s all a juggling act and one I think I’m getting better at handling…until the next curve ball comes along of course. So after an MRI, a Lumbar Puncture ( which actually wasn’t as bad as I expected it would be ) and 10 days in hospital I apparently have Trigeminal Neuralgia.

So, what on earth is that?

Trigeminal neuralgia is inflammation of the trigeminal nerve, causing intense facial pain. It is also known as tic douloureax because the intense pain can cause you to contort your face and move your head to try and get away from the pain. That type of movement is known as a tic. The pain of trigeminal neuralgia is intense. There is often no known cause but it can be linked to auto immune diseases, most commonly Lupus and Multiple Sclerosis.

Idiopathic trigeminal neuralgia is a clinical diagnosis and often no testing is required after your Dr has taken a history of the situation but in my case my Specialists wanted to rule out MS so I needed the MRI & Lumbar Puncture. My Neurologist however still believes despite my Lumbar Puncture results being ok, that I do in fact have an inflammatory nerve disease. We have just parked that thought though for now as I have more than enough to contend with and the medication I have been given to treat the neuralgia ( Lyrica) is working really well for me…thank goodness!!

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