On reading posts here, so much about meds, surgical procedures, destructive procedures etc.
which gets a little depressing.
We hear of symptoms which according to classification, don't match TN, type 1 or 2, ATN or whatever you want to label it, yet it is stated, well some do on these forums add it to the mix. e.g. paraesthesia/ numbness in the facial region suddenly becomes part of TN, part of peripheral neuropathy sure, but not TN due to classification. Tearing, red ear, flushed cheeks, part of TN, not a part of TN due to classification, other.
Realising facial pain is not an easy diagnosis, why are folk, with symptoms outside of TN, accordingly, accepting as such with additional symptoms, e.g those mentioned above.
Folk with parasthesia, anaesthesia/ numbness, autonomic symptoms- redness, tearing according to classification are not suffering from TN in its true form, suffering no doubt, but is it Tn? Not according to TN classification.
I'm not in the US, but would anyone like to help out? Those who visit a neurologist , do they ask you questions beyond pain distribution? ( I'm simplifying it) Would just like to find an answer. Do they give you a neurological examination, or do they listen and then prescribe. I may well being unfair, but reading the forum it is a question I would like to ask of members.
Short story, reading the forum I can't help but think, consult with the neuro, consists of ' I've pain here and here', oh you have TN try these meds. Your experiences?
For me, I was first considered to be chronic cluster headache, but then I was in a headache study for 2 years. I wrote daily in my headache log and the doctor took his notes, my notes, hours of discussion, and came to the conclusion I was in fact suffering from trigeminal autonomic cephalgia. Not that one is better than the other, just a little different. You can have symptoms of 2 or more different conditions at the same time. It seems we all hurt differently but with the same severity and constantness. I get some relief, but not much, in knowing what is causing me pain, that God made me this way, I am not to question his plan, just to endure it to possibly help, along the way, other people hurting.Good luck in your search.
In July 2014, I went to my neurologist who treated my migraines, complaining that I had had a toothache but the dentist and endodontist both said there was nothing wrong. I had looked on the internet and found the term "trigeminal neuralgia" and asked if that's what I had. She said no because it did not hurt when I actually touched my face; only my tooth hurt. My headache medicine, Imitrex (sumatriptan), seemed to help, so she suspected it might be some variation of a migraine. Despite that thought, she also thought it might be hemicrania, where only half of the head hurts, since it was only on one side. She prescribed an anti-inflammatory medication, but it didn't seem help, so I stopped taking it because it made me feel funny. When I went for my follow-up appt about 6 wks later, the pain had subsided, so she said, "It's gone, so let's not worry about it." Over the next few months, the pain went to the side of my nose, so I went to my ENT, thinking it might be a deep sinus infection. He scoped my sinuses and said there was no sign of anything wrong. He suggested it might be TN and gave me the name of a neurosurgeon. And again it went away. In the summer of 2015, it re-appeared with a wiggly-worm sensation running from the tooth up to my eyeball. Then my eyeball felt like it in a vise. This time I made an appt w/ the neurosurgeon suggested by my ENT. Unfortunately, I couldn't get in right away and went back to my neurologist. This time she said it was atypical face pain and gave me Tripleptal. Within 3 days I was in the ER w/ a bad reaction to it. The ER dr. prescribed Neurontin (gabapentin). Within a week, I had a rash. I gave up on my neurologist at this point and went to the neurosurgeon in October 2015. He prescribed Baclofen, which made my BP drop and I felt faint. When I went for my follow-up in November 2015, I was in constant pain. When I told him my eye felt like it was in a clamp, he said, "THIS is trigeminal neuralgia. Let's have an MRI." I had the MRI in December 2015. Follow-up appt was in January 2016, but I couldn't make it because I had an episode of pain. My eye is in a clamp and my vision in my right eye is not right, so I can't drive myself around until it lets up. I go back in a few weeks to decide what to do -- At my last appt, he said gamma knife. And so I wait. My attacks come about once a week, typically in the eye and tooth.
You won't get a long answer out of me I'm afraid! Essentially my doctor diagnosed me with ATN BECAUSE I had the parathesia/numbness but also because I have on occasions taken a stroll across the road into TN, for months at a time. From my own research ATN can and does wander a little outside it's classification.
Thanks for the answers so far. Everyone on the forum, must have a diagnosis experience of some sort, and feel it would be of interest to other members as well as myself, I'm interested can we have a few more? They may well be helpful, certainly illuminating.
I have been diagnosed with bilateral TN and fybromialgia. My whole body in constant pain. I take 29 tablets a day and awaiting to see my neurologist again. I am unhappy with this and am currently seeking a second opinion through best doctors.
Having had decompression surgery for a Chiaria Mlformation 8 years prior, I returned to the NS who performed the surgery when the occasional burning pain in my right scalp became relentless. After reviewing a new MRI, he did not think it was related to Chiari, and referred me to a neurologist. It took four months to get that appointment, during which time I started to experience the shocks of TN1 on the right side of my face. The neurologist thought my pain was related to Chiari, and gave me Topomax. Starting at a low dose, I quickly was brought up to 400 mg per day, with no real relief, and side effects that were interfering with my daily life. I did a lot of searching on the Internet, and became pretty certain I had TN, so I found a new neurologist. At my first appointment, I told him I thought I had TN, and he proceeded to give me a thorough neurological exam,and agreed that TN was most likely the cause of my pain. He prescribed Tergretol, which can help confirm a diagnosis of TN if affective. Tegretol incredibly well, but unfortunately I was allergic to it. Within 10 months I was out of options for medication, so I chose surgery.
I know it is often difficult to get a proper diagnosis when you have a rare condition, and I have two! In both cases, I did my own research and had to go to some length to convince doctors of my diagnosis.
Considering there is no definitive diagnosis for TN or ATN it is impossible to know for a fact what any of us really have. I think they are a catch all diagnosis, especially ATN. Much of what is believed in the main stream medical field does not hold true once you start talking to people that actually have these afflictions.
I personally think there are many, many causes of facial pain and the truth is that no one does really know...
For me it started when I was 29. I went to dentists, Drs, ERs, specialists for months on end with zero answers and zero help. I was a train wreck of 24-7 pain. Finally a Dr gave me Amitriptyline and it worked. It took my pain away and there was no diagnosis at all. But TN runs in my family. My mom has it and we still didn't make the connection because her pain was in her cheek and nose and mine was in a tooth. It was only after all of this that we put two and two together. My aunt also has it and so did my great grandmother. My mom is also bilateral but she also has MS. I do not and am almost 40 so hopefully I never will. My mom knows nothing about TN compared to me. She has never met or talked to anyone that has it.
I was on that med for a year. I went off of it because I wanted to have a baby and the pain was gone. Fast forward seven years and hell on earth starts again in another tooth. Well, the dentist redoes a filling, opens it up and puts a medicated filling in, antibiotics, pain pills, etc and finally talks me into having a root canal. Once that didn't work I knew. I went to my GP and got Amitriptyline again. This time I had the internet to help me which makes all the difference with a rare disease. I research the best neurosurgeon in Toronto for TN and got a referral from my GP. We meet and he diagnoses me ATN and gives me a referral to a facial pain specialist neurologist because he won't touch me with a 10 foot pole. I am not classic and there is no compression showing on my tests.
So now my specialist is great if I want more medication but that is really all that he does. I have been questioning everything since this came back and truthfully have a lot of pain that is off of my face now. The back of my head, my neck, shoulder, arm. I have a bulging disc and physio does seem to help with everything but it all comes back over and over. My GP thinks I have fibromyalgia and I do have a lot of symptoms of that. For the last few months I have taken a medical vacation of sorts and have stopped searching for answers because every test I have is normal and every symptom I have is invisible. It is exhausting.
TN has decided to come back with a vengeance this winter so I am back on the search for help. This website has offered me more support and information then anyone else. I think it is imperative that we all keep asking questions, learning as much as we can and searching for proper diagnoses and treatment.
Ayers I'm not really sure what to make of your comments to be honest. I'm a little vague on what you're labelling as bullshit, is it the fact that people are diagnosed with ATN or the fact they think they have it or............?
When I first started looking for a diagnosis I had classic TN; zaps, meat cleavers attacking my tongue, couldn't brush my teeth, wash my hair or face without crying, couldn't say certain letters like P without pain. After the merry-go-round of dentists, chiropractors( because I thought it was coming from my neck) I finally landed at my GP who diagnosed TN and put me on Tegretol. When it went into remission for a few weeks I stupidly stopped the Tegretol and it resurfaced with the whole hyper sensitive skin thing where a brush from my cat's tail across my cheek would have me screaming like a banshee.
When i had my MRI and was diagnosed by the Neuro it had settled into what it is now, numb but burning tongue, roof of my mouth, bottom lip and sometimes top. Aching teeth and cheek. That my Neuro classed as ATN with periods of TN.
So, what part exactly is bullshit Ayers? Where does that fit in?
In many ways I'd have to agree with Ayers, ATN is a "bull shit" diagnosis, and so is TN1/ typical. Why else is the cause of TN a hypothesis despite the many years it has been described? About as useful as the diagnosis of lumbago, headache, sciatica etc. It is a description of symptoms, nothing more, but does enable a pharma prescription, pain relief is important. However it then potentially puts the patient in a bracket, these are your next options, all for pain relief but none addresses the cause- short of hypothesis.
How many other diseases does western medicine in their eyes fall short? Few by comparison, from a medic point of view.
So we have a forum which the same points are continually discussed, namely medication/ surgical procedures, etc. No criticism of forums, but it is all a rehash. So whilst TN remains a hypothesis, ATN, Ayers bullshit diagnosis is going to hold true, and rightfully so, it is not a diagnosis.
ATN,TN and trigeminal neuropathy, should be worlds apart, even according to classification, if I'm not mistaken.
TN be it TN1, 2, atypical or what any one else might to term, it is rare.
Personal opinion; Type 1, type 2 is/ has the same cause just a different symptom pattern, the number of folks on this forum who express a mix of the two, would seem to confirm it. We have a a rare disease but so many displaying or graduating to one or other or both. Some neurosurgeons share the belief.
I believe this distinction comes about by the fact surgical procedures, pharma is more successful with certain symptom patterns, possibly severity of symptoms , and so the distinction. Parasthesia and numbness, according to classification has no place in tn, but in tn neuropathy or a missed diagnosis.
Anecdotal:
(as an aside, I had a patient today- I lie she rebooked because of work commitments, but reading her notes saw me 12 months ago suffering with neck right sided facial pain and tooth pain ((as well as low back pain and shin pain-not overly relevant)) Both subsided after treatment- quickly. She also had a history of migraine. Both migraine and face pain were eased by the oral contraceptive pill. I'm kind of hoping she is revisiting due to her face pain, and see what results she gets.). Purely anecdotal but I'm interested.
Ayers said:
I read also on a neurological essay found on the US national library of medicine the following:
http://www.ncbi.nlm.nih.gov/pubmed/8109278
TN is paroxysmal, stabbing pain with pain free intervals.
Neuropathy is constant pain
ATN is an overlap of both (I assume by that they mean, stabbing pain plus constant pain)
Based on that I would have neither of them.... since my pain is dull but constant but it's not a neuropathy as ruled out by already three medical specialists (2 neurologists and one endodontist) they all three told me it deposit seem to be neurological!
However I've been told here that they're wrong, that my pain sounds like ATN and that I don't need to have stabbing pain.
At the end of the day.... who do I believe?
I just want answers!