Hi , I have posted before so I apologise if repeating myself but as I have now seen a neurologist Id thought Id repost. My husband has type 1 tn diagnosed 12 years ago and I have recently seen a neuro for what I now believe are type 1 and 2 symptoms.The neuro alternated between atypical facial pain and persistant ideopathic facial pain in the very short consult, but in the letter to my GP said "face pain with neuropathic qualities".
In the last few years I have had mild burning itching pulling pressure sensation in my sinuses and cheeks. So mild I ignored it . One one occasion a couple of years ago I had pain streak down the side of my face twice and I thought Id opened my jaw too wide. In the last 9 mths I have had some kind of pain every day , either pressure grinding burning pain or sharp Jabs everywhere from my temples down, including my inner ears. Initially on one side but bilaterally within 4 days. I have started gabapentin but the pain is slowly getting worse.
My husbands tn flares up every 1-2 years for 7-10 days. He only takes tegretol during this time ( I have told him not really recommended to do it this way). He believes it may be related to herpes simplex virus ( I know normally herpes zoster) as he gets a mouth full of ulcers just prior to a flare up. Last attack nearly 2 years ago but next time he will try an antiviral med to see if it helps.
My husband has never seen a neuro so no MRI. I did not have a physical exam but had an MRI no contrast which showed no reason for the tn. Does anyone have any ideas of why spouses could develop an uncommon disease. My main concern is my daughter has also had some concerning symptoms, stabbing electric shock pains in temple and ear, luckily mild and stopped after having an orthodontic maxilliary expander removed,we are watchful waiting.
I understand there may be an inherited predisposition or blood vessel formation but it seems too improbable with a spouse not blood related. Could we have all been exposed to a common virus, chemical or environmental cause.
The neuro was not that interested so I know I will have to do the leg work for this. Any ideas would be appreciated. Also a big thank you to all on this forum. It felt like a big step to join and post, it stopped being able to deny tn. The immediate welcome by moderators I received was lovely. Also I appreciate the evidence/research based information provided by Red.