Atypical Odontalgia

Not yet, but will start on Gabapentin next week. I will ask about the Amitriptyline too. Reading some of the other posts I feel pretty lucky, because I can get through the day pretty easily with only some slight discomfort from time to time. My heart goes out to those who are having such a rough time!

Sorry Adam that should have read 1200mg a day taken 3 x daily lol

I too gave up on meds not because of side effects but because no relief given I never get a pain free day but do when I'm asleep. My doctor said on my last visit many months ago that it will jys go away one day just like it came..yeah have it now about 10 years with no let up. Ice is good numbs it I eat ice lollies for that reason and use Oragel as it numbs too but doesn't last long and there only small tubes.

Hello Maureen,What meds were you on? I'm actually have decided to up the very small dose of pregabalin that I'm on.Im quite fearful of medications but I think that came about from an awful withdrawal process that I went through from a med a few years ago.I know there are lots of combinations out there that work for a lot of people.I haven't as yet had a medic who has worked with me to guide me through these myriads ofmmeds.Anyway I hope today wasn't a too bad a day!

I'm on a few meds but none for the AO as tried what your on and was no good for me no effect at all plus tried Gabapentin with no result either. I've just read that Ampitripaline is the med for it but I can't take it as I'm on Lithium for bipolar I also take Lamictal and Sertraline antidepressants for the low mood of bipolar lithium is for the mania as is a mood stabiliser. I'm at wits end as have this tooth pain every for past 10 years it's woeful.

I take daily Sertaline Lamictal for the low mood of bipolar also Lithium mood stabiliser for the high mood to keep it from happening plus Thyroxine for under active thyroid. I've said I've been on Gabapentin and Pregablin both did nothing. I too went through bad withdrawal from Pregablin had to go back up again and do it over months to get of it as it made me very anxious at lower dose and that wasn't what I was taking it for it was for my tooth pain. I'm thinking there's nothing out there that can help and no physician either knows enough about it to help. I have pain everyday for past 10 years began with burning mouth syndrome and developed into AO in a few months..I had a back tooth wisdom one extracted and I think that must have triggered it off as it's said dental work does. I've had 2 other teeth extracted also beside where that wisdom tooth was because of pain shift with no relief either also had Radio frequency carried out by a specialist in that field but wrong nerve was burden off which has left side of my face slightly numb but that's nothing compared to AO. Hope the Gabapentin works for you as God made us all different.

Hi. I'm desperately seeking some information from anyone. I have diagnosed myself with AO as no professionals seem to understand what I'm going through. I managed to get almost pain free for 3 weeks by taking amitriptyline 20mg. Then all of a sudden it has started to come back. Im feeling so upset and anxious.. why has it stopped working? Has anyone else experienced this? My gp and dentist dnt seem to know what to do with me.. I've been referred for a facial scan but it's taking ages. No one is suggesting Any other medication. It seems to be such a long process of trial and error. I'm desperate .... Any suggestions would be greatly appreciated. Thank you

I feel your paun i do. Ive been suffering approx 10 years now with this tried few diff meds nothing worked. Im disappointed to hear you say about Ampitripyline stopping working for you do you think maybe your dose needs increased ask your doctor. Ive been swayed away from that med because i take lithium for BP but last appt my doc says i can try it under their supervision so next week at my appt im hoping to get the script for it but what youve now said has been a bit of a bummer to me.

Isnt it awful that we have to go diagnosing ourselves as i was like yourself regards that denist said it was medical doc said it was dental back and forward i was sent neither knew what it was but since then ive read up a lot of information in it like yourself im sure. I had Radiofrequency for it..a probe inserted in through my cheek to touch the nerve to the top gums were i have tge pain in the tooth but it was so severe as tge probe has to be applied 3 times touching the nerve each time and you say if thats the pain you feel the its burned off only i just said thats it after the 2nd time as i couldnt sticj the pain and ive birthed 4 babies so know all about pain and am a good suffer of pain have to be to have put up with this for years now. So tge wrong nerve was burned instead of the top the bottom one was. I couldnt go through it again when at my review he said he would try again as when he told me tge danger is if its the very top nerve tgat runs to your eyes it can make you go blind..guess you understand my refusal.

I'll let you know how i get on with tge ampitripyline and you keep me posted too.

How long have you got AO?

Hi Maureen.

I started on 10mg of amitriptyline then increased it to 20mg. I was almost pain free for three weeks and then one morning I woke up at 4am with a throbbing in my tooth and it was back. Im now on 50mg amitriptyline and it hasn't gone away. I'm feeling really disappointed and dnt know what to try next as there's so many medications to try and reading people's experiences it's seems like it's trial and error. I will continue with 50mg for another week and may increase it again as I've read lots of people are on 75mg. I'm also taking naproxen twice a day. Luckily I am not in agony my pain moves around yesterday I had pins and needles in my cheek all day which wasn't painful but a really horrible sensation all day. This morning I had the throbbing back in my tooth. It's quite strong but I'm not in complete agony. I am going on holiday on Friday for 2 wks so quite stressed out about that... praying my mouth is calm as right now it's frightening never knowing what tomorrow may bring. The worst part like you said is that I've been passed around and no one seems to no what to do with me. I'm still waiting to see a neurologist.

Thank you for keeping in touch it certainly helps to know I'm not alone although I wouldnt wish this on anyone.

Let me know how you get on.

X

Hello again Tamiko

The only tine i get restbite from the OT is when im asleep. Then after approx 30mins it kicks in for another whole day. I use a gel from my doc Oragel it has benzicaine in it which numbs the tooth and pain simikar to being in the denists although it wears of faster si you have to keep reappling it. Between that and chewing gum which i hate but chewing also helps keep it at a lesser pain while it lasts as the effect also wears off.

How long have you had it i have it approx 10years now no let up also told my dentist before i knew what it was i had to remove 2 back teeth at seperate times as i was convinced it was toothache i had but it just moves into the next tooth dentist said she refuses to remove anymore teeth as they were good healthy teeth she removed. It helped finding a diagnoses online as when i read about OT i was able to identify with every part of the description to a T.

People..professionals just dont know how it hurts and is always with us i read its one of the top pain that is very difficult to bear and we can testify to that.

Keep in touch it does help as you said that we are not alone with this pain my last hope is ampitripyline when i see my GP next week God willing.

If i didnt have my saviour with me i dont know how i would cope..not very well i know if at all.

Hi Tamiko, how are you feeling now? What happened with the medications, and are you more comfortable now? I'm in Canada, by the way. Wishing you comfort and a great day. 

Oh Stephanie you say at 150mg Ampitripaline doesn't work for you now that's really burst my hope of it..not that I can have it any way due to taking lithium but had hoped maybe at a low dose I could do if my psychiatrist allowed me too.

You talk about having it months well I'm 10 years down the track with and my GP just said on last appt it'll go away one day so I can't go back to him after saying that as obviously he diesnt know what to give me to help. It's only by research myself that I may God willing come across something that will help. If you find a cure please please put it on here asap.

Hi Maureen I took nortripyline which is sister  drug to amtripyline and it didn't work either.Have you looked on Living with TN site as there is masses of info there on meds.

 

Ive been going through some phantom tooth pain since last friday and I have been in pure agony. I had 4 teeth pulled a few months ago and one of the sites just started throbbing out of no wherre and hasnt let up. I took some norcos at bedtime so i could sleep but it still hurts in the morning. It seems to radiate to the upper right side of my head as a headache and I'm scared it might be something worse. Im only 19 and i dont want to live my life in pain . Please if you have any info send it my way

I have looked at those sites but TN is not the same as OT it is in the teeth or gums TN is facial pain.

Both caused by neurolgia though.

Sorry for delay in reply please excuse that, been caravanning in our tourer helps take the mind to other places away from OT.

Hello, I self diagnosed my AO about 5 years ago after pain every day in teeth in right side of mouth for 8 years. I had healthy teeth pulled and pain just got worse. Went to general doctors, dentists, and neurologists and finally got the neurologist to prescribe me imipramine (generic Tofranil). At first he put me on a series of different anticonvulsants, but none helped my pain and they all changed my personality (went from a nice person to being someone who just wanted to punch everyone I came across....not good). Finally he agreed to try me on imipramine. I read a paper about it working well for AO (and my neurologist kept saying I had TN, which didn't fit my symptoms, but that was why he put me on anticonvulsants instead of tricyclics). About 2 months on it, I was pain free for the first time in over 8 years! Please note that not all generic meds are created equal. I was on the Par 54 imipramine and it worked great, but when switching pharmacies they had me on EP 133 imip. and pain came back. Went back on Par 54 and pain free again. I do get occasional breakthrough pain, but I can usually make it tolerable with topical capsaicin cream rubbed into my gums in areas of pain. A trick I learned from other scientific papers on neuralgia pain. Chewing gum used to help me also ( as long as I started chewing before pain came). I am pain free while sleeping (typical with AO), but pain used to start about an hour after waking up and last entire day. Lyrica also worked, but I couldn't handle the side effects. Imipramine side effects on my low dose of 20mg twice a day are pretty much nonexistent. Hang in there and don't give up! I have been passed around from doctor to doctor and dentist to dentist and even had some dentists think I was trying to score pain pills with a "fake" issue, but I didn't give up. Extra note: regular pain meds like hydrocodone do not relieve AO pain, so I would have never tried to "score" pain meds!

Hi is your AO in bottom teeth ?

I have been suffering for 3 years and was convinced it was teeth problems as i have times when it goes away,

Just had another back molar pulled and im still getting pain im so fed up with it..i look after my teeth so well also its embarrassing keep going to dentist and he never sees anything on xray,

Do you have a bitter taste when you suffer? Im on amytriptelene but not helping any advice would be great,

Hello Krit138

Oh thank you much for your reply i was waiting on somebody coming on who had answers.

I did get Ampitripyline given from my GP 10mg daily at first then increased to 20mg which im on now i did get pain free for first few days then bang it came back just as it was before. Unsure now if increase again will work the pain free few days were when i first went on the med. My psychiatrist said no but my lithium nurse said try it so i did it only becomes an antidepressant at a certain dose i think over 100mg that was psychiatrist worry.

Anyway its not working and it so has your exact symptoms. Took me longer to self diagnose hence reason im over 10years down the line.

I will say about Par 54 imipramine on my next visit with my GP which is only few weeks away. The gewing gum does take pain away even if it has begun with me but doesnt last out i use Oragel 20% also i must look for that cream you use ive read about it before.

Thank you so much please keep in touch.

How long have you been on

Par 54 imipramine please?

Lordbless you.

Stephanie

Can you please tell me how you got the Capsaicin cream to apply to ur gums. I read of that before but could find any to use orally so i bought a chilly pepper sml one and cutt it into slices applied to tge area but wasnt any good.

I have looked the med up online and it interacts with Sertaline which i am on 150mg daily for bipolar. So i am not sure my GP will prescribe me it. Was doubtful last time about Ampitripyline because im also on lithium for same thing but it was only a mild and under supervision i could have it.

But this one states its not for use with Sertaline.

Bummer that is.

I see GP end of month again so will ask her anyway and let her decide.

Hello barbara54882, I don't have a bitter taste when I get breakthrough pain now, but I sometimes did before I got on the imipramine.

The AO started out in my right bottom back teeth, but eventually migrated to my top right back teeth also years later. After years of research I found a scientific paper that had case studies of people with TN and AO and their differences. I shared the paper with my dentist who is now trying to help other people with the same concerns I had. I would also suggest a good neurologist. I was referred to one that dealt with neuralgia pains and things got better after that.

Hello Maureen 25289,

I've been on the Par 54 for about 6 or 7 years. We started at around 10mg a day, but went up to 20mg. It wasn't helping at first, so we split the dose to 10mg twice a day and it started to work. Still had a little pain, so went to 20mg twice a day and that did the trick. I haven't had to increase the dose since then and it has been several years.

As for the capsaicin I use; I just have an over the counter high potency strength capsaicin (0.1%) topical analgesic cream for arthritis. You can buy the cream at any store that sells over the counter meds. It isn't for oral use, but I use only a very small amount on my gums where there is pain. Please note that it burns like crazy, so be careful when you first use it! I am used to the burn, so it doesn't bother me now. It is supposed to desensitize the nerves and lower sensation of pain. It was a godsend during the times before imipramine and also during times I would experience breakthrough pain while on imipramine (breakthrough only occurring about 1 day a month). Some papers state to apply it 4 times a day, but I would just apply it when I felt the pain starting and usually after the burn subsided, my pain would be lessened or be gone. If lessened, I would reapply as needed. You can also buy cayenne pepper extract that is edible, but I found that it did not stay in the areas I applied it as well as the topical cream. Probably because it needs a non-volatile carrier so it doesn't evaporate so quickly. Please let me know if you have any other questions. Take care!

I answered where to buy capsaicin in earlier post.

Is it Imipramine that interacts with Sertaline? Or all tricyclic antidepressants? What about Lyrica? I was on Lyrica before imipramine and my pain was gone in only 2 weeks. I had some major side effects though, but not everyone will have those side effects (weight gain, irritability, etc), so I switched to imipramine.

Stephanie

Thank you for your help i too have been on Lyrica which did nothing and coming of it was hard going had to be taken very very slowly as i tried to speed it up and do it in 1 week but had to go back on it again and wean of slow.

It is the Sertaline that maybe be the problem i wont get it as it does interact with it ive looked it up but im not for telling my doc but if she looks in her wee book she will know.

Can only but ask.

Thank you again.

Hi krit138

Thanks for taking the time to reply ,

Mine started bottom left and now has moved to bottom right , it really gets you down doesnt it? Thanks for advice i am waiting for an appointment at maxillo facial dept so will mention what you suggested .

I had said i was on Lyrica for well over a year it didnt touch the pain at all thats why i came of it. I know you said tge capsaicin cream can be bought over the counter i intend to get it.

Again thank you.

Thank you for this post. I'm at my wits end after 1 year of this mess. None of the dentists, endodontists or periodontists have been much help. My pcp just prescribed gabapentin although I don't have much hope after reading all of the neg reviews people give it on here. I'll remember this post and ask my doc about that med when I see her again. My emotional resources are at an all time low. Sometimes I really don't know how much longer I can cope without some relief. Thank you for sharing some hope.

Hi Carroll, I am still on Amitryptaline, I am stable around 30mg, everytime I try to drop it back to 20mg the pain comes back its a nightmare. Im managing it ok, but I do feel sleepy when I get up in the mornings although it doesnt last. I also have to take the tablets by 8pm or im tired in the mornings but about 1 and half hours after taking them i need to go to bed, its really annoying. I went for an MRI a couple of weeks ago but after 15mins I freaked out and had to get out of it. They wanted me to do an hour. I couldnt do it and now really annoyed with myself as I desperately wanted the results. My consultant has told me that once you start on these tablets Im most likely going to be on them for life. which im not happy about. The whole thing is a nightmare and is definately life controlling. Although I am so thankful that most days im not in pain. How are you getting on?  It really helps listening to other peoples stories.

Omg I'm so glad I found this site. I'm losing my mind. No one can relate, I feel so alone in this. I had an accident as a child and chipped off most of my front teeth. Had crowns in there, no probs at all. Then a few years ago it was time to replace them, they were over 20 years old. So my dentist did. Then a year or so later one of them had a tiny crack. No pain. Just a tiny hairline crack. So he replaced it. And here is where the nightmare begins. There was a problem with the crown prep and my tooth never felt right again. Had pain until went back for the permanent, they placed it then realized it was wrong color, so took it off, temp crown back on. Still pain. Went back had the new crown put on. Pain persisted. He said there was something defective with the crown so took it back off. Pain a little better. But new crown on and pain cane roaring back. Said I needed a root canal. 2 days after root canal pain was unbearable. Like I thought I was dying. He was out of town and unreachable. I lost hope with him and went to new doc for 2nd opinion. That doc said X-rays look good, wanted me to wait a few days to see if it settled. It didn't. Actually got worse. He referred me to an endodontist who did a 2nd root canal and diagnosed me with cracked tooth with Recommendation to pull and get implant. Referred to periodontist who pulled it in November and placed implant. Still pain but not as bad, like I didn't think I was dying but uncomfortable most of the time. The periodontist can find no cause of pain. X-rays and Ct scans look good, implant looks good. Pain continues. Placed the temp crown on the implant 2 weeks ago and said if pain continues he will refer me to a neurologist because he can find no cause of the pain. Of course it is continuing and nothing seems to help. I have decent days where I can manage it pretty well and says like today when I want to cry because the pain is awful and I'm afraid i will feel like this the rest of my life. My pcp started me on gabapentin Monday. If once I'm up to a therapeutic dose I have no relief she'll refer me to a neurologist. The last few days have been awful. I want to call the periodontist who is doing the implant but I already know what he'll say

Ahhh I'm so sorry to hear this. I know exactly how you feel. I was passed from dentist to GP to hospital. I was in unbearable pain thought I was gonna loose my mind all my x rays were clear. I finally diagnosed myself and researched medication. It has now been 9 months since this all started most days I'm pain free but still have a mild throbbing and aching in my tooth. I have had two root canels and one tooth pulled out. Even though I had the tooth pulled out the pain and throbbing just moved to another teeth. It's so weird no one seems to understand and I can't believe I have this. Although I'm so greatful this medication is working I dnt want to be on this for life. I am back at the hospital in August not sure where we go from here as there doesn't seem to be any answers 😕

I think it's amazing you found a medicine that's working. I hope I can. I'm so frustrated and have lost faith in doctors ability to figure things out. And I'm feeling really angry that this happened and has sort of stole my life from me. It's like there is always a 3rd person in the room. Me, the person in trying to spend time with and then the pain. Always there. Distracting me and interfering with everything. Sometimes I could just scream. Although the last few days have been particularly bad, so I'm extra grouchy. Lol bare with me 🙂

I know exactly how you feel. I can really sympathise. When mine first started I was like a zombie walking around in pain I had pins and needles down one side of my face. I was getting angry with my partner cause no one seemed to understand what I was going through. One day I literally drove between the GP dentist and A+E crying like a baby begging someone to do something. No pain killers worked for me. All I can say is there is a lot of medicines to try unfortunately it can take time to find one that works for you but bare with it. Amitriptyline is the second one I tried. Bare it in mind I'm not a doctor but it's worked for me. I still get the odd bad day yesterday and today my tooth has been throbbing it woke me up at 4am but it's not unbearable although not pleasant. I hope you find what works for you soon. Keep in touch it helps to talk to people who understand. I had no idea this even existed before I had it x

Hi Tamiko,

What meds did u try before you tried Amitriptyline? Did you try gabapentin? That's what my doc started me on, but slowly ramping up the dose...only at 300mg so far, but not really helping. I have good days and REALLY bad ones. Sometimes it's so hard to cope with. I am wondering how long I should hang in there before asking about something else. I'm normally a pretty happy person, but this is taking a toll. On bad days I'm close to tears all of the time and so hopeless. Back when it was bad for you, how did you cope? Kind of at my wits end 😐

Carroll

hi there, i wondered if you might share this paper with me also please?