AO for past 12 years

Hello, I have had AO since around 2005. Had many dental procedures done and even had perfectly healthy teeth extracted, but pain just got worse. I finally found a paper online of case reports of Atypical Odontalgia and realized it fit my symptoms perfectly. Went to a neurologist (2011) who called it trigeminal neuralgia for some unknown reason (since I didn’t have sharp, shooting, electrical shock type pain) and started me on gabapentin. That didn’t help and made me easily agitated and almost homicidal. Next I was put on Lyrica. This helped, but same agitation and extreme weight gain in a short time. Next I asked to try Topamax. No weight issue, but no pain relief and still had major anger issues (not normal for me). I did some more research and read that tricyclic antidepressants were the first line therapy for AO, so asked my neurologist to prescribe imipramine ( didn’t want amitriptyline because of the side effects). Imipramine didn’t work at first, but once we increased the dosage and then split it to twice a day (20mg twice a day) I was pain free! Worked for the past 6 years and even went down to 15mg twice a day and pain was still under control. Had periodic breakthrough pain which was controlled mostly with capsaicin (breakthrough pain only occurring 1 day every couple of months, so not bad). For the past few months, the pain has been returning, so neurologist increased imipramine dosage (first to 20mg twice a day and eventually up to 80mg), but still no pain relief and more bothersome side effects. Next went on nortriptyline, but was a zombie on that and still had pain. I am now on desipramine (50mg twice a day), but lots of pain still (more consistent pain). Not really sure what happened (why I was pain free for so many years and now nothing is working). I just called a pain management specialist and hoping to get an appointment soon. I am hoping a nerve block or something will help since I am having a difficult time dealing with the pain and none of my previous “tricks” (like capsaicin, chewing gum, etc) are helping the pain now. Anyone else have pain relief that just stopped after a few years?

Sorry to hear you are back to suffering, I have only had ATN (No shocks, just deep constant aches and occasional burning on/in, the left side of my face) for 3 years, almost exactly. Since I have only had mostly effective pain relief (that has side effects I can live with) for about 8 months I have not had time to loose effectiveness abruptly, but I have heard about it happening to others. some people attribute it to a change in their nerves, some people think it is a tolerance to the medication. Most of us have no clue but it certainly is not fair. Good luck to you!

I am sorry you have to join our club.I am glad that you found something that worked for a while.I have had luck with peppermint essential oil and with salon pas patches on the face.
I also find really strong mints help.
Maybe you have a dental problem now?
That would just be the very best.
I just hate how we need to diagnose ourselves and then beg for prescriptions.I have had so many that don’t work and then the pharmacist gets all worried like you are taking ALL the different drugs at once.
Wishing you luck.

Unfortunately needing to change up meds is common. I think part of it is dose issues because your body does adjust to meds but the worse part is that TN/ATN is known to get worse over time.

Patience is the key. People here seem to have luck with pamelor. There’s trileptal. Lamictal. Lidocaine patch. Cymbalta. And there’s the fact you ciykd simply go back into remission.

Much like you I had 6 years of very low pain, after 3 years of trying meds, then a year of pain, now I’ve been largely pain free for 7 months. Frustrating but also the nature of this beast.

I always preach extreme caution in undertaking any procedure. They just don’t know that much about nerves! You can always make it worse! At least with meds your body will reset if it goes badly. Screw up a nerve and you’re toast.

You are not alone. We’ve all been through the one step forward two steeps back of treating nerve pain.

I thought that maybe I had a dental problem now, but the pain is where I no longer have any teeth and it is on the bottom and top. Also, it doesn’t cause any pain while sleeping. I just had a dental checkup in June and I have another in a few weeks, so I will have them do a few x-rays just to be sure. I did get some peppermint extract, but it made my gums feel a little raw. Chewing peppermint gum helps when the pain is moderate, but does nothing when the pain is severe. I will see what the pain management doctor has to say and then go from there.

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I put the peppermint extract on the outside
In the mouth would hurt.
And it does help me quite a bit.
but it is all a crapshoot.
How about TMD problem?
All the specialists I see say no, but a ear ,Nose,Throat guy did something
that took the pain away and said it was a TMD problem.
It’s all a crapshoot.
Who knows.
You could get lucky.
When is the appointment?

HI Krt, welcome to the Living with facial pain forum. I’m curious about why you haven’t tried amitryptiline? (I’ve been on most of the tricyclics at one time or another). Have you tried any topical medications? Can you tell me a little more about what your pain feels like?

The fact that the pain goes away when you sleep might be a sign of TN/ATN, there’s a school of thought that if the pain “sleeps” when you do it’s TN. Of course this doesn’t apply across the board (what does?).

Hi ellen5, I tried putting topicals on the outside of my mouth, but it didn’t help. My neurologist did have a compounding pharmacy make me a oromucosal formula that had two anticonvulsants and ketamine, but it seemed to make the pain worse. She also prescribed me a lidocaine viscous mouth rinse; that numbs up the area for only about 5-10 minutes (which doesn’t totally alleviate the pain, but maybe takes the edge off a bit), but once the lidocaine numbness wears off, the pain seems worse. I haven’t made the appointment with the pain management specialist yet. I called them yesterday and they have to get my medical records from my neurologist first and then they will call to make an appointment. I will be seeing an anesthesiologist pain management specialist. I do know that before I was diagnosed and I was having all those dental procedures done (trying to get rid of the pain), I did respond to anesthetic injections (pain would go away for a while after the injection, but come right back after it wore off), so I thought that maybe I would respond well to a stellate ganglion block. I am indeed worried about making things worse, but I may just at least hear what the anesthesiologist has to say.

Hi ziggy, I did try amitriptyline way back in the beginning, but I was so groggy, I couldn’t function. I may not have given it enough time, but it didn’t seem to help with the pain. Nortriptyline is supposed to have less anticholinergic effects, but I was also super groggy on that one too. Imipramine didn’t really cause any side effects for me and because of that, we were able to give it a longer try (which worked). I replied already (to a different member) about the topicals I have tried (capsaicin, a combination of ketamine, gabapentin, and carbamazepine, and lidocaine viscous). Capsaicin used to work very well for breakthrough pain and now it does help while the burning sensation is there (basically trading one type of pain for another), but once it wears off, the pain is back.
My pain basically starts off after waking up (a few minutes after waking) as a tightness in the gums which then progresses throughout the day to a toothache type pain…dull ache with maybe a bit of a burning sensation. It is only in the areas where I used to have a tooth (back bottom right and back top right). No sharp or shooting electric shock pain at all.

I cannot believe how educated you have gotten.
I hope you stay on this board and continue posting how your treatment is going.
_I would really like to know how it goes for you.
Don’t be surprised if you end up knowing more than the pain specialist.
Everyone,including the specialists,seem confused by my symptoms s just keep passing me around.
Canada-we do not pay for most doctors(through our taxes)but if none of them figures out what it is I just get passed to the next like a hot potato.
Good Luck

ellen5, I am a researcher by profession (Senior R&D Chemist), so I have researched the crap out of this condition and read every scientific paper I could get my hands on. I was lucky that I found a neurologist that was familiar with AO and my dentist also wanted more information since she had other patients after me with similar issues (so she asked me to send her papers that I found on AO). I am a bit skeptical about pain management specialists, but I am not sure what else to do at this point. I have tried every med known to help this, so I am grasping at straws here:)

You seem to have been lucky so far-I am rooting for you.
Anyone who has done all the research that you have deserves a break.
I was at pain management for a bad lower back and had all the
stuff-chiro,accupuncture,injection -nothing helped.
Then I got the mouth pain and spent so long at my computer researching-I
decided to get a yoga ball to sit on and wiggle my butt around-at least get
some exercise,instead of sitting and wiggled my back into the proper
position after 5 years of agony.
When I told my neuro at the pain management that-he suggested I figure out
a way to twist my face into being pain free.That is where I get my cynicism.
BUT-I am hoping the best for you

Thanks ellen5, but I guess I don’t feel so lucky right now. I feel like I was “pampered” for the last 5-6 years because I was pain free after being in pain for several years and having no idea why…and it makes it harder to deal with this time around (because I know what I have and we still cannot get rid of the pain). Exhausted being in pain every single day now, so trying to not get too desperate to where I let someone do a risky procedure on me. I hope we all can find relief that lasts!

Have you tried clonazepam?
It works on burning mouth.
Might be worth it to give it a shot.
Dr Miriam Grushka has done a lot of work on people with burning mouth.It was working for me but once I got a bony island removed it caused my hands to go numb-like pretty much all the anti depressants do.I might be OK to go back on it now-just people scare me with the potential reaction of the codeine with it.
But if you have not tried it ,give it a go.(if you want)

Add peppermint oil ( mutiple drops) to almond carrier oil (larger amount). I can put this on my teeth and gums and no irritation.
This might work for you if it is strong enough.

I haven’t tried clonazepam, but I am not sure I would want to. Isn’t it habit forming? Also you can only take it short term from what I read. I could ask my neurologist, but I am not sure they would prescribe it (they don’t prescribe any of the habit forming medications I don’t think).

Hi Linda99, I will try diluting the peppermint oil with a carrier oil and see if that helps. thanks for the suggestion!

I was able to just stop.But everyone is different.My way of thinking is that if it takes my pain down to a level where I can function but not to a level that I am overly pain free that it is doing what it needs to do.
I used to be big on herbs.But they do not work for my pain.
Even the marijuana oil just lets me sleep,but not pain free.I wake up in pain.
You could ask for a couple and crush them and try them topically.
I think ziggy has made a lot of her own topical stuff.
Good Luck

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I may still ask my neurologist for it just to give it a try. They may say no though. I could try making a topical with it if they prescribe it. Have plenty of things in the lab to use to make it.
Does anyone have any experience with the times and dosages needed for meds to work for your pain? In other words, I have been on desipramine since October 20th, but started at only 25mg at bedtime. We increased dosage to 75mg (split twice a day) on the 25th and then to 100mg (50mg twice a day) November 2nd. I cannot remember how long it took the imipramine to work back in the day, so I wasn’t sure if it took a week or two or possibly a month or two. Just want to know how much time I should give this dosage. thanks!