Hi everyone,
Let me introduce myself. I have had TN Type I for 3 and a half years. Mine just came out of the blue, with no warning. It took me 6 weeks to be diagnosed by my GP, put on Tegretol and after 3 weeks was pain free. A visit to a Neurologist and an MRI confirmed that I had TN in the mandibular branch with nothing showing on the MRI and no reasons why I have this. Over the years I’ve had attacks (mostly attributed to stressful times in my life), where I’ve upped my dosage of Tegretol, but each attack is more painful and leaves me on a higher dose of Tegretol. Last year’s attacks were quite severe so was put on Lamictal with Tegretol, but this did nothing. I started seeing a Chiropractor for upper cervical treatment, giving me relief for 6 months before my most recent attack, which has been debilitating and is leaving me feeling there is just no hope. As well as the sharp jolts of pain, which I might add have changed in feeling to be more “clearer” (for want of a better word) and more painful, I also started to have spasms of this pain which would go for up to 45 seconds at a time. These would start when trying to put a toothbrush in my mouth, when eating, talking, once just from the vibration of walking. I increased my Tegretol to 1000mg but this was still not taking the edge off the pain. My GP added Gabapentin 300mg, and this has now taken the spasms away, and taken the edge off the jolts in my face/mouth, however am still in enough pain that I am mostly on liquids or soft food.
I am still working, however cannot talk without pain so try not to (hard when I am in HR!!) My colleagues and managers are very supportive, but how long will their patience last? I am very forgetful, and come home to my husband and 3 kids and do not have the energy to do anything. My husband is also supportive, but my kids are too young to have to watch me crying all the time and not want to do anything except lie down.
My doctor has suggested I see a Neurosurgeon to discuss surgery. My appointment is next week. From what I have researched (and researched and researched!!), MVD would be the best choice, if I am a good candidate. I am quite scared of having the surgery, however cannot go on with the pain and/or the huge doses of meds. I am almost always having double vision, and with my tiny 50kg frame, am worried about increasing meds further. I am only just in the non-toxic range as it is.
I would like to ask if anyone else have these uncontrollable painful spasms which can go on for up to a minute each time, spasming in my face, and sometimes while it happens, my chin and tongue gets a sensation of burning. Is this a normal progression of the condition? Up till now, I have just had the painful ‘electric-shock’ like jolts.
Anyway, I have enjoyed reading everyone’s posts for the last few weeks, and am so glad to have joined so that I too can hopefully provide support to you all, and am really reaching out as this is such a lonely condition.
Gen xx