Atypical Odontalgia
Posted , 32 users are following.
Hi guys,
For the past two months I've suffered with pain which seemed to stem from a crown I had previously had a crown and two root canals on. I also had a strange dull sensastion across my jaw and cheek, sometimes turning into tingling. After 5 dentists, and seemingly no explanation why I was having the pain, my current (excellent) dentist now strongly believes it's a form of neuralgia. I had the offending tooth taken out so the tooth pain has gone but I'm still left with the sensation across my cheek and jaw, which sometimes also manifests itself as slight sensitivity in surrounding teeth. I don't have the sharp, shooting pain associated with TN however. It's more a constant dull ache.
Any others out there in the same boat with me and can share advice etc.? I'm a Brit currently living in Tanzania, so not a lot of specialists out here!
Cheers,
Adam
2 likes, 115 replies
tony91887 adam_11852
Posted
I have only being diagnosed with TN (Trigeminal Neuralgia) for about 2-3 months now, so. I am fairly new to the TN condition.
When I first started feeling the first pain symptoms, I also thought “it was a tooth problem,” but; when the pain started to increase its intensity and it became more intolerable, I started to panic. At first; I thought it could be my eyes… I thought that because, I spend a lot of time behind a computer at my job, that perhaps I had stressed my eyes out, and that was why I was having that pain, since it starts at the inner part of my left eye and travels up like a shooting staving sensation through my eye, ending in the top of my left side of my skull. So I made an appointment with the ophthalmologist, only to be told that there is nothing wrong with my eyes. I went to my Doctor, and he mentioned that I could possible may have TN. After an MRI and a visit to a Neurologist, It was confirmed that I have TN.
I started with 200mg Tegretol, or (Carbamazepine), and in less than 4 months my after being diagnosed with TN I am now at 600mg every 12 hours… And for some forsaken reason, still “it does not take my pain away completely,” I still get some pain during eating, brushing my teeth and when I first wake up. Is a terrible thing to have for anyone.
I hope you are not diagnosed with it.
Have a wonderful day.
adam_11852 tony91887
Posted
Very sorry to hear you're having a hard time of it. The feeling is always there for me at the minute, and a couple of times a day it will get very uncomfortable. I don't have the shooting sensation which is a bonus as it sounds terrible. I am about to climb Africa's ninth highest mountain so not taking any meds at the moment, but my doctor wants to start me on Gabapentin when I get back. I hope it makes a difference!
Glor888 tony91887
Posted
Ive read your message and note you are taking 600mg twice a day. I was on 1200mg a day but didn't relieve the pain 100% so my Dr prescribed me Amitriptyline at night and I was fine. Ask your Dr if he can put you on these and see how you get on.
maggie80535 adam_11852
Posted
maureen_25289 adam_11852
Posted
Adam I have Atypical Ondontalgia self diagnosed as gave up on do ctors and dentist after having 2 good teeth removed because of pain in first one which moved to next one after it was removed so got 2nd one out only for pain to move into next tooth my dentist said she won't remove any more teeth as they were good teeth I had removed. I began looking online for a diagnosis and came across AO and it's my symptoms to a T. I've had Gabapentin and Pregablin neither of which helped and really hard to get off must wean very slowly. I hope you have more joy than I did Adam maybe your pain symptoms are different from mine I hope so.
sally62433 Glor888
Posted
Glor888 sally62433
Posted
Yes, Amitryptiline did help to keep my pain away. I took it at night which I found helped a lot, especially for the following day.
How are you coping?
Best Regards
Gloriana
tamiko_84091 maureen_25289
Posted
Hi there.. I have also diagnosed myself with AO. My GP has been totally useless and while I went between A&E the dentist and the GP crying like a baby I did all the research myself as no one understood the pain I was feeling.
I have just been given amitriptyline today which I will start tonight. I feel very reluctant bur I have no choice I can't live my life in pain.
Would be great to hear from you!
maureen_25289 tamiko_84091
Posted
How have you been getting on? I still am no further forward with the AO but have an appt with mp GP soon she said she will let me try a low dose of ampitripyline..low dose because i am on a few other meds for bipolar and have to be careful it doesnt upset them.
When i get it I'll come back and update.
tamiko_84091 Glor888
Posted
Hi. Can you tell me how much amitriptyline you was prescribed I've been started on 10mg. How much was you taking to see some pain relief?
tamiko_84091 maureen_25289
Posted
Hi Maureen
I just sent a long reply but it seems to have disappeared lol so not sure if you will get two replies now
I only started the amitriptyline last night so not sure how long it takes im thinking at least a week and I'm only on 10mg which is a low dose so really not sure what to expect.
I can't believe that this is all such a long process and that there is no quick pain relief it's a nightmare and from listening to others im sure I'm not half as bad.
The thing I've found so worrying is the lack of support from professionals they have just passed me around from gp to a and e to dentist all suggesting something different.
Let me know how you get on I wish you lots of luck x x
barbara54882 tamiko_84091
Posted
i have just joined as I wanted to know if there were many more people suffering like I have,your symptoms sound very similar to mine,
i was diagnosed in my 30s with AO by a maxillo facial consultant and prescribed me medication by the way of beta blockers and antidepressants which gradually worked and after two years I was pain free,
i am now in my fifties and the last three years I have lost three teeth and I have Now realised this was unnecessary but what I would like to know is have you or has anyone on here with AO experience a really bitter salty taste with there symptoms?
carroll34493 tamiko_84091
Posted
Hey Tamiko, how did the amitriptyline work for you? My pcp just started me on Gabapentin. I'm so anxious that I'll never feel normal again.
arlene2529 carroll34493
Posted
I just came across this discussion and I think I may have AO as well. I had a tooth pulled about 7 months ago and now I have this pain in my tooth that goes away with Ibropropen for a while but then comes back. I went to my dentist this week and he told me that it could be caused by low sinuses and he suggested that I see the periodontist about a possible sinus lift, bone graft and implant. Not only does that sound awful, and scares me to death, it costs a fortune and there's no guarantee that it will solve the problem. I also thought it might be a sinus infection so I saw a dr. and got antibiotics and they did say my sinuses were a little swollen but I still have the pain after 3 full days on the antibiotic. After looking online, this AO sounds almost exactly what I have. My problem is that I don't think my dentist will agree with this. I'm also not sure my medical dr. will agree either as she is somewhat old fashioned. I'd like to see someone about this but I don't know who to turn to and how to explain it without them thinking that I'm crazy.
Any advice would be greatly appreciated.
carroll34493 arlene2529
Posted
I really recommend joining support groups on FB. I have found a few that have been just immeasurably helpful. Search Atypical Odontalgia and ATF pain in FB groups. I have gotten so much helpful information from the people in those groups. I am still trying to sort it out. Luckily my doctor is really open to the possibility of AO and is willing to prescribe me meds to manage the pain. My pain literally never really goes away and can range from mild to so intense it feels completely unmanageable. I'm getting some relief now but still having bad days so she is referring me for an MRI and to a nuerologist. I'm also trying to get my periodontist to send me to a maxillofacial pain specialist. I'm exploring all options.
linda91215 barbara54882
Posted
I am new to this forum, but like you I also have a salty taste in my mouth on the side of my AO! I know you posted a while back, but did you ever get to the bottom of it?
Like you I am also in my 50s, Ive had three teeth removed unnecessarily, have been passed from pillar to post for 3 years while living with a horrible deep ache in my face down through to my gums, I could quite happily have taken my own teeth out at times!
I was finally diagnosed with Persistent Idiopathic Facial Pain last week on put on Pregabalin. Researching, AO is a subcategory of PIFP.
It great to finally know whats wrong, but not so great to find out its not easy to treat!
barbara54882 linda91215
Posted
Hi Linda,
thanks for writing on here your the first one I have heard from regarding the horrible salty taste, I have been waiting for an appointment at the maxillo facial department for ages, finally got one in a couple of weeks,
the trouble is my pain and bitter taste has gone for now,
i know it will return as has before but it's just annoying as when your in pain is when you need the appointment!
its nice to be pain free but this has happened lots of times before for a few months only to return with a vengeance..
i will let you know my outcome,
does your symptoms ever go for a while or is it continually painful etc?
linda91215 barbara54882
Posted
I know it all takes so long to be seen. I was discharged a year ago and told to eat soft food and basically get on with it!!! Went back to my GP, she sent me to Physiotherapy who sent me back to the GP, who then sent me to ENT at a different hospital, who then sent me back to my dentist saying one of my teeth looked different, dentist said it was fine and referred my back to the original hospital, I was then stuck in their 18 week waiting system! So frustrating!
My ache and salty taste are there all of the time, but I do get major flare ups which make me want to stab my gums and remove the teeth that are left!
I hope you get some help from the hospital
x
barbara54882 linda91215
Posted
It must be awful to not get a break from the pain and bitter taste it really can be so depressing, it was this taste thing that really baffled me as it is unusual, you seem to suffer more than me i do feel for you, when ive had bad pain it makes me want to go and hibernate, thankfully the worst i get is 3 or 4 really bad days then its managable...ive been on amitryptiline which does help have you tried them?
X
stella-z tamiko_84091
Posted
Tamiko, it sounds like you're in Canada...
janice91400 maureen_25289
Posted
I HAVE AO. , FOR 16 MONTHS NOW. PAIN IN ALL TEETH. UPPER AND LOWER JAW. BEEN TO ALL DRS., neurologist says its phantom tooth pain. AO. ATYPICAL ODONTALGIA. HAVE BEEN ON NORTRIPTYLINE FOR A FEW MONTHS NOW? I TAKE 25 mgs at night. it works until about three oclock the next day, then the pain returns. I cant take more, it doesnt agree with me. IAM 68 years old . I HAD all my upper teeth removed, against my dentist wishes. two on the bottom too. STILL PAIN!!!! THIS IS TOUGH. pain, and side effects from meds. I ALSO TAKE GABAPENTINE?! ONE EACH EVENING. I WAS TAKING FOUR A YEAR AGO. WILL THIS EVER GO AWAY??????