Hey Lin,
TN has been one of my (many) diagnosis and it was more a case of 'Well, it’s not ‘X’ and it’s not ‘Y’, so it must be TN…" than a direct diagnosis. TN, according to some is often caused by an irritation of the trigeminal nerve and this can occur anywhere along the nerve branches, so the triggers can set off pain almost anywhere on the head.
I had neurosurgery to treat a brain tumour and was told ‘All Fixed’, only it wasn’t, so they operated again, and again… …and again, each time being told ‘All fixed’. I think it’s fair to say that the likelihood that my trigeminal nerve was NOT damaged at some point highly unlikely, so a diagnosis of TN was not surprising.
I was trialled on all sorts of meds, none of which were my ‘key’, I also trialled numerous treatments of Botox via a neurologist, to no avail. I was then told ‘It’s dental’, so I had all of my top teeth removed. It’s not dental. ‘It could be your eyes…’ was next, so I now wear glasses and the specs have helped my sight but not my pain. If someone’s suggested a treatment I’ve given it a fair trial ie acupuncture, Bowen therapy (a form of pressure point activation) TENS machine, hydrotherapy, hypnotherapy, naturopathy etc, etc,
You speak of ‘Remission’. I don’t think I’ve actually been in remission, as such. I had a good 7-8 years where I had some control, but the last 7-8 have not been great. I think I’ve had periods of lesser symptoms, periods of bad symptoms and periods of OMG symptoms. For me management of physical activity is important. If I do too much today I know I’ll be paying for it tomorrow, but the issue I have is how much is too much? And that seems to fluctuate. I’m often explaining it like this:
Today I could leap a tall building in a single bound (OK, so a bit of an exaggeration),
but tomorrow I might be lucky if I can even crawl out of bed. I simply never can tell.
And this can make the whole management scenario like trying to juggle bowling balls, you just know you’re going to get hit by one of them sooner or later. A BIG part of my management is medications. I’ve trialled heart meds, epilepsy meds, psych meds etc etc sure some had some effect but I couldn’t function and 1/2 of them, just yuck. I know what assists for me, and I need a low(er) dose opiate. I know some medicos have the attitude of ‘Demon Opiates’ at the moment, but that’s what assists me. I also use ‘medically prescribed’ cannabis, it’s not a painkiller, but it takes my mind elsewhere off of the constant, unrelenting, nauseating pain.
My advice: follow through with the Dr’s, follow through with their suggestions, be that treatments, medications or referrals to other specialist. That one dr or specialist you think ‘that won’t help’ and reject could just have the ‘key’ you’re looking for. Try them all, but keep records of who you see, what for and their treatments, medications etc. I’ve had to go around and around in circles getting the same test for each dr, specialist, druid I saw. Now, when they ask “Have you tried ‘X’?” “Yes, and here’s the report”. I’ve got it all documented.
TN is NOT a ‘one size fit all’ condition neither in type, in pain, nor in treatments and although some medicos make out they have all of the answers, they don’t. I wish you the very best on your journey and hope you find your ‘Key’.
Merl from the Modsupport Team