Remission Without Meds?

9 years ago I had what my doctors diagnosed as neuralgia due to an abscessed tooth. Very painful shocks of pain throughout my face on the left side at any given moment with no known triggers. Never saw a neurologist or had imaging done. Long story short, I had all of my wisdom teeth removed and I had a root canal. Six months later the pain was gone.

Now, I’m getting very small bolts of pain on my left side in my ear, randomly throughout my jaw (top and bottom) and teeth. It feels like the “warning” bolts before my attacks 9 years ago, but the excruciating pain from before hasn’t occurred (so so grateful). My primary care was quick to say I have TN given my “history” with facial pain, but I’m skeptical to believe I have TN. I’m seeing a dentist tomorrow to have a filling replaced because it’s cracked and my dentist thinks MAYBE it’s attributing to my pain.

I’ve never been on any medication to help with facial pain, I just dealt with it 9 years ago the best I could while I waited for my oral surgeries. Back then, I would’ve 100% believed I had TN but now I’m not sure. Is this a mild case of TN? I’m seeing a neurologist next week, but just curious…is remission of 9 years possible without medication? What are your remission stories? How long have you been in remission? Were you always medicated during remission?

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


Very eye opening, Merl. How long have you had TN? When were you diagnosed?

Thank you for your response. I do plan to follow through with my doctor’s recommendations. I just left the dentist and I await the neurologist. I hope I find a way to manage this if it is indeed TN. It’s a scary diagnosis and the medications seem even scarier.

I appreciate your detailed response and hopefully I can find what fits for me.

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“How long have you had TN?”
Now, that’s highly debatable. I’ve had symptoms since I was a child that were written off and minimised for many years as psychosomatic/hypochondria/all in my head (No pun intended). Then they found it was ‘all in my head’ my first neurosurgery was in '96 and it’s been a bit of a rollercoaster ever since. But in 2013 I had 3 further neurosurgeries and my symptoms have been chronic bad ever since. As far as the neuros are concerned “We operated, we fixed…” but this is far from fixed. So I went looking for answers, hence the TN diagnosis.

I was given the TN diagnosis in 2015.

Merl from the Modsupport Team

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Hi Lin,
I was diagnosed with TN in March of 2013. I had severe pain on the left side of my face with no known trigger for a few months. Long story short, I tried several drugs. I know the last one was gabapentin, but I stopped it in November because I could not function at work while on it. For the most part (thank God!) the pain was gone and hasn’t returned. I still get occasional sparking/tingles that freak me out a bit, but so far none of the pounding pain, I do have kind of a sense of fullness or puffiness on the left side but it is not visible. After all these years I, too, wonder did I/do I really have TN?

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Yes I am having remissions since 1974 when first diagnosed on right side of face, for varying periods. most of the time lasting up to 2 to 3 years. when pain returns Tegretol works for me.

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You sound so much like me. I’m relieved to know that there are similar stories to mine. And yes, the twinges are so scary!! It feels like an impending doom as soon as I get a twinge because I’m scared it’s going to evolve to the bolts of pain across my face.

Thank you for sharing!