Hi everyone. Ended up going to the ER Saturday night because the pain in my hands and arms was so bad. ER doctors were stumped and said best stop the Tegretol. Then I got shipped off to an assessment ward and the medical registrar looked at me, gave me one dose of gabapentin and said we're admitting you, the medical consultant will see you in the morning.
So yesterday she saw me and said forget the gabapentin we will watch you off all drugs other than pain medication and see how you go, the neurologist will be here tomorrow.
So today my arms and legs don't have neuralgia as much but the TN pain is back because I'm not on any neuro meds anymore.
Neuro came to see me and he said well I'm a mystery, the arm/hand thing isn't a side effect of Tegretol because it would of started in my feet first apparently. He wasn't even sure that I should of been on Tegretol to start with (despite it dulling the TN). He even went as far as saying that I do have some sort of issue with my trigeminal nerve but it may not be TN because my attacks aren't the classic few seconds (some are 2-7 minutes long)?! Anyone else been told this when your attacks are longer?! Sounds weird to me, I thought TN came in all weird and wonderful pains!
So he has me down for an MRI (he giggled a bit when he saw all my piercings) to check several things out and any other tests he can think of.
My hubby brought in a USB modem and my laptop so everyone on Facebook doesn't think I am dead and dropped off the plant :D
Here I was thinking I had a diagnosis and drugs to help me :(
It was just a thought, I have no concrete evidence that piercing causes TN, and let’s face it piercing is very popular worldwide just now, if there is a connection I feel it must be rare. However I was curious.
I'll have to have a read. Just got back to the ward from having an MRI of head and neck. They made me take out my head piercings but said the rest would be fine (I did tape them up to make sure!). So now it's a waiting game. The neuro did say if bloodwork and MRI show nothing I might need a lumbar puncture to check for infection etc in my nervous system :/ yuck!
Going home today. I did say to my husband it's scary having a scan because who knows what else they will find and they did find other stuff! Can hopefully get that sorted. As far as the TN goes there's no anatomical thing that is causing it so it's something within the nerves. Bit of a shame it's nothing that can be "fixed".
They have changed me to gabapentin (apparently here to get it you need to have failed on front-line drugs like carbamazepine). Despite the neurologist thinking it wasn't the tegretol causing the peripheral neuralgia the ward doctors are sure it was because it faded off as the tegretol got out of my system. A hospital pharmacist has noted down the neuralgia as a reaction to the tegretol.
My TMJ is playing up big time, I wonder if it is from trying to stay so still in the MRI scanner. And my face pain is really bad today too :/ Let's hope the gabapentin works!
Just wanted to let you know that my TN pain was always more than a few seconds. I would freeze (stun-like to ride it out) for sometimes up to a minute before it stopped every single time it was triggered. That could happen fifty to sixty times a day. So yeah, as it was explained to me as an electronic pulse disturbance between the blood vessels and trigeminal nerve, it makes sense that anyone would experience the pain sensations in different ways.
Again, I am surprised that people here were on either one or another of the usual medications. I have been on Tegretol, Gabapentin, baclofen AND arthrotec all together each day for the last five years in increasing dosages. The mix was very helpful in making the pain tolerable so I could function in life, but of course they had to be increased gradually as the pain got worse over time to where they no longer helped at all before my MVD surgery last month. happy to say I am taking zero medications now, but I was very curious about the medications doctors seem to have everyone else on.