I can understand everything that you mention but before I talk about myself, this is the advice I would give you based on my personal experiences.
Firstly a Dentist/Doctor can’t diagnose TN a Neurologist does. If there is a thought that it is a possible TN issue and it is not a result of facial/dental trauma you should have an MRI with contrast also possibly see an Ears/Nose/Throat specialist to rule out any issues there too.
The MRI will show whether there is a blood vessel touching the nerve and hopefully rule out a tumour and MS.
The MRI might not show anything at which point a Neurologist (who’s skilled in neurological headaches) will talk to you about the pain attacks; their frequency, the level of pain and the length etc. as sometimes it is diagnosed from ruling out other potential causes.
I know that most people a clued up on TN but there are also a group of conditions known as TAC’s (Trigeminal Autonomic Cephalgias); hemicrania continua, peroxysmal hemicrania, cluster headaches and SUNCT (short lasting unilateral neuralgiaform headache with conjunctival injection and tearing). Basically TN plus autonomic symptoms eg, flu/cold like symptoms, earache, tinnitus etc.
I have SUNCT and I have only come across one Doctor whom has knowledge of neurological headaches and that’s after 25 years of trying. I had to go into a previous Doctor’s office and tell them that they can either refer me to a Neurologist or call the police because I’m not leaving.
Fortunately they didn’t call the police. Three hospitals and six neurologists later I am now under the department of a world renowned professor of neurology and am getting more support and fortunately, although I still get 100+ pain attacks a day they are more bearable with the current medications.
Unfortunately finding the right medications for someone will take time and trial and error, there is no ‘one size fits all’. It took me almost a year to build up the dosage of Lamatrogine which has vastly reduced my pain from excruciating/torturous and these now only happen every 2-3 months.
My condition is also degenerative and I’ve been told that unless there is advances in medical treatments/medications there will come a point whereby I will be on a runaway pain train and morbidly, only death will stop it.
I do have a blood vessel near my trigeminal nerve but not enough to cause the issues. Personally I think it’s an issue of faulty wiring between my brain and the trigeminal ganglion region which could also be impacted by the hypothalamus and/or the pituitary gland. Unfortunately there are currently no medical tests to analyse that part of the brain so it’s just a theory.
I have been in those dark times and still am, I recently said to my Doctor that if the pain was in another appendage I would have it chopped off. If the pain was still there, well at least I tried but can’t do that with my head.
The pain doesn’t just make you feel physically broken but psychologically too. I try to stay positive and say well things have been worse, I’m only tortured every 2-3 months and the rest of the time if I literally do nothing all day, I can mitigate the pain. The anxiety of; is this the start of a pain cycle or will I aggravate it if I go for a walk is no way to live and unfortunately some people in this world have a fate worse than death and yes there are reasons why people with 5th cranial nerve issues have a high suicide rate.
Fortunately you have a daughter to stay strong for and before you go down the dark path you owe it to each other to try everything, even if that means having dentures… it might be a small price to pay but in the grand scheme of things who needs teeth when they’re dead?
Stay strong, get multiple opinions with several experts and if you see no light at the end of the tunnel and you need to talk it through, there is no shame in talking to a psychiatrist!
