Hi everyone...
Here's my story, and I have some questions in the end, so please bear with me :-))
It started more than 6 months ago. I began to have a vague (at first) pain in the right upper corner of my mouth around the molar and pre-molar teeth which are just below the sinus cavity... I couldn't tell exactly which tooth was hurting me - it was more like the pain would zip back and forth and settle on a different tooth in that row. I also noticed that hot coffee or cold drinks would trigger it. Of course - I assumed it was the tooth but which one?
I saw a number of dentists for second, third and fourth opinion...They all did x-rays and told me that other than mild caries on my molars in the back - there seems to be NOTHING wrong, nothing that could cause that kind of pain. One of the dentists insisted that I needed a root canal on my pre-molar tooth in right mandibular region, - that perhaps the nerve is dying and the rest is really a case of referred pain. I agreed and away we went. But immediately after - the pain returned. I cam back and he opened the temporary filling in case it was infected to release pressure....didn't help, needless to say. In fact, - the pain got worse and now began to settle on 2 front teeth which were crowned. My regular dentist assumed it was the front 2nd incisor to the right (despite negative x-ray) because that tooth actually had a nerve unlike its root canaled neighbour. (indeed that tooth would sometimes hurt me mildly when I was flossing). He root canaled it immediately and said the nerve was necrotic. The pain ceased the same evening...
Yet already on the next day it returned with vengeance! I began to experience severe pressure in my right mandible which grew worse and worse towards the evening. By evening it felt like someone connected a car battery to my right cheek, - not shock-like jolts but steady ROLLING WAVE OF ELECTRICITY. When it reached it's apogee - my teeth would begin to hurt. They hurt exactly like teeth, even ones with no nerves in them (!) 4 dentists and over 20 negative x-rays later I knew that dentists will be of no help and began looking for a diagnosis elsewhere......
The pain would steadily grow every day towards the evening and NOTHING, not toradol,not ibuprofen nor even morphine (and I am on morphine for pre-existing severe chronic pain and disabling spasms in my back). I felt absolutely desperate. The only thing that matched ALL my symptoms was Atypical Odontalgia or Atypical Orofacial Pain (sometimes cross - referenced as TN type 2). Never before when looking for what ailed me in the past did I find such an exact match. I am a psychologist, so I know how to counter cognitive biases when doing online research but despite all the objectivity I tried to exercise, I became convinced this is what I have... I just needed to eliminate other "contestants" such as Sinusitis and TMD (a.k.a. TMJ) by going to my GP and ordering necessary tests and referrals.
But the pain became so mind bogglingly intense!! It began to involve right upper jaw, cheek and ear. Sometimes severe toothache would immediately cease and jump behind my ear where it would hurt at 2-3 on a likert scale of 1-10 and not 9 or 10 anymore. The pressure began to involve the bridge of my nose, behind my eye it felt like my face will pop off and my teeth felt like they are being pushed out....I thought I may be having some kind of a mass pushing on my nerves and went to ER...Negative CT scan, terrible treatment, condescending rude attitude... They charged me $45 bucks (apparently Canadian Free Healthcare doesn't include ambulance. Get there on your own if you happen to be broke LOL) and I was sent home..
My GP at first thought Sinusitis despite negative CT scan and put me on Amoxycillin. Needless to say it didn't help much. The pain would be as intense in evenings so I had to do all my chores in the first part of the day before the pain would have me pace back and forth until 3-4 am. I was growing desperate. It's been 3 months and things were progressively worse...I began seriously considering suicide.
It wasn't something impulsive - I approached the issue quite socratically. I realized that the pain was destroying who I was as a person. That I was becoming very irritable, miserable, intolerant even rude...I realized that the pain will eventually waste me away until I am no longer the person I was or not a person at all!. I didn't want to wait for the pain to degrade my personality completely, I realized that sooner or later I would have to take my own life because it no longer was worth living and I wanted to be remembered the way I was BEFORE the pain destroyed me - a naive but understandable human wish. I am a scientist - I don't believe in all the "pain is a spiritual teacher" New Age wish wash, - I know for a fact that it destroys one's humanity if very strong and chronic
I explained the situation in details to a couple of people I consider my best friends that if something were to happen to me - to please understand that this is not cowardice or in any way directed against them. Cowardice is waiting for a miracle which will never occur, like a helpless animal that doesn't have a choice. Humans should always have a CHOICE and should not be deprived of a choice to take their own life if facing the prospect of severe lifelong suffering of such grim nature...In the West we still value Sanctity of Life over Quality of Life and Moral Autonomy principles weighed together. I was mentally and emotionally preparing to die...
Luckily my GP recognized what it was. She had little choice after she familiarized herself with a stack of peer reviewed material on the subject of TN and AOP that I brought her..What are doctors for when you need to self-diagnose first to get treatment!?! But she was good, she did trigger point tests for TMD (TMJ) and I had no typical trigger points...She immediately prescribed Lyrica and wrote a referral to a neurologist and one for MRI. It took awhile for Lyrica to have any effect on the pain. At first - it just helped me fall asleep. The neurologist also tested for TMJ and concluded that it must indeed be AOP and that my nerves may have been aggravated by dental procedures (which I had plenty before that). However, I also had similar albeit much milder pain on the left side of my jaw and face and he said that for AOP to be idiopathic - it's very rare to have it on both sides, He wanted MRI to see if anything impacted on trigeminal nerves.
By ten Lyrica began working and my pain became a bit milder. The MRI took a month and showed nothing out of ordinary except enlarged cervical lymph nodes on the left. These nodes would often hurt me when I would come inside form the cold. Just in case infection was really the underlying reason for AOP, my GP put me on prolonged antibiotic treatment. I am near the end of it and it isn't helping...I am beginning to think that the swollen lymph nodes as well as other symptoms I developed lately - nausea, excessive tiredness, clumsiness and metal fog as well as intermittent night sweats can be indicative of early cancer like Hodgkins Lymphoma. I feel incredibly sick and it impacts my work. I lost around 40 or so pounds in less than a year without trying and at first I attributed it to quitting amitriptyline but when weight loss continued on I became concerned...
It sucks to be me I guess...Anyway my point is - I am not convinced at all that my AOP is idiopathic, I know that it is common for individuals with AOP and TN to seek organic causes and alternative diagnoses but nonetheless I firmly believe that that my AOP is far from idiopathic. I shouldn't be feeling nauseous, lethargic, cognitively impaired...I shouldn't have to punch another hole in my belt every month because my pants are falling down, - without even trying to lose weight. And those sweats that can occur out of the blue during the night/early morning hours, frequent headaches which often made me throw up...I became absolutely intolerant of the cold which exacerbated my symptoms
Anyway, I wonder if any of you folks are completely satisfied with your diagnosis or, if you believe there may be another underlying organic cause for this condition? Do you have other symptoms which are both alarming and inconsistent with idiopathic TN, Atypical TN or AOP? Or, were any of you diagnosed with a co-morbid condition (which at least in theory or in principle could trigger TN/AOP by impacting on the nerves, etc. ?
Grateful for any help.