Atypical and miserable tooth pain?

General General TN & GPN (Old Site)
21

Hi Lynn, my nuero took me off gabapentin when I was taking 1200mg a day. He said if I wasn't getting relief at that dose it just wouldn't help taking more. Th oral/facial dentist agreed with him. Did you have any relief at a lower dose? I know many people take much higher doses but the nuero won't prescribe more. I am going to another nuero for his opinion. Gizmo

Lynn said:

I have the same symptooms but mine started after the dentist did a root canal. That evening, when the anesthesia wore off, I had terrible pain. That was 7 months ago, and I haven't had a pain-free day since. I have mostly tooth pain, intermittently throughout the day. I take gabapentin 600 mg. 3 times daily, and never go anywhere without Orajel Severe Toothache cream. It does help temporarily. The gabapentin seems to manage the other pain, i.e. cheek, jaw, and sensitivity to cold. I try to take a day at a time, and enjoy the pain-free times. You are not alone - best of luck to you and all of us with this terrible disease!

22



Obsidian said:

hThanks everyone, Now I've got some new things to try :) Today facial pain is creeping back. I think maybe the tooth pain is always the same, but my perception of it is changes when other areas are more at rest. This is certainly a crazy way to live. Wish I could take meds but not an option, have horrible reactions to just about everything. So topical stuff is the only thing for me. I take 1 extra strength tylenol every night - it doesn't to anything for the pain but helps with sleep. Not great for the liver I've heard, but I asked the neuro and he said it was ok. Anymore than that and I can't keep it down. Sigh ....

Thanks for all the support. I rarely mention this to family or friends anymore, no point really. Nothing anyone can do and I get sick of listening to myself so I'm sure they do too.

23

so sorry about the pain and I have the same thing have you ever tried an osteopath I was in his office on the bed and had an attack and he did a cranial sacral and instant relief I go to him regularly and at the moment am not on any meds anything is worth a try I live in fiere of pain coming back its like the devil on my shoulder

this week I celebrate my 80th bday diggers

24

Hello all; Well it started out with what I thought was pain in my teeth. After 3 different dentists and 3 teeth removed for nothing --- none of them recognized Trigeminal Neuralgia. This was 3 years ago and recently the pain returned once again in my teeth and I visited the dentist who took x-rays and reassured me that my teeth are in good condition. Like you I could not even press my top teeth against the bottom ones. The pain eventually subsided and but it is still bad at times. If you have been diagnosed with Trigeminal Neuralgia don't fuss around with your teeth or gums - as it is all part and package of Trigeminal Neuralgia.....!!!! I have finally opted to go ahead with the surgery and hope it will be done next month. . This is surely not a good quality of life right now and I am willing to take the risk.

25

Well, I can tell you this, when it starts in my mouth and jaw, DERMA TRAN, new topical facial gel to relieve TN, it has several ingredients, which can be changed by Pain Management clinic prescribed it for me. I had these lidocaine patches once, obviously it was hard to use because it peels off. but I did notice that it lessened pain under patch, which was amusing. After 21 yrs gotta laugh at something But I also noticed that by the time the pain got to end of nerve, it lessened pain a tiny bit. Pulling it off could jump start AN ATTACK.

So good luck, hang in there

.

26

HI, Obsidian,

( lovely name, lovely stone!)

from your description, you and I have very similar situations and pain patterns. And YES! I have found some help for the pain of the roof of mouth/tongue/ sometimes extends down the throat; pain on swallowing or difficulty ( impossiblity?) swallowing, at times... I won't go into all the gory details just yet! ha.

my DX's include: TN, glossopharyngeal neuralgia ( which accounts for the upper palate, tongue,and throat pain symptoms); and chronic daily migraine -- all of which I manage by a juggling act of various, daily pharmacueticals; oh, plus a talking bird who can make me laugh ( even though, I know, laughing, or even smiling, can hurt us at times, its' worth it)

MOst important, to answer your main question: Lidocaine viscous solution, 2% viscous solution has been my savior from that part of the constellation . As prescribed by my neurologist//'headache/migraine/pain specialst: 'taek 1-2 sips as needed' for pain on swallowing.

The idea here is it will coat the area w/ the topical lidocaine solution, being as viscous as it is, it works quite well.

IN the second prescription I received, they did not put any flavoring in it -- it is rather disgusting, if not flavored. so, I suggest you remember to ask your pharmacist if it will be flavored/or,to put in some flavoring ( they have it on hand for use in children's cough syrup) to make it more palatable. in any event, flavored or not, it's better thant eh pain, and works quickly.

BTW, when I use it, I try to piour it into the back of my mouth, so that my tongue, etc. doesn't have to become numb; yu will probably find a way to direct it to where you need it most, though it might taeka soem acrobatic kind of manoevering!!

I hope htis is of some help. Then I will lknow htat at least through my years of suffering, i've been ableto aid someone else int he same boat!!!!

I"m sorry you are experiencing so much UOS. ( I don't like to use the 'P-'word', so I usually refer to it w/ my friends as " Unwanted, Over-the-top Sensations"

You mention tha tyou had no dental work preceding the tooth pain, and so on. Had you at any time before that had any sort of injury or trauma to your neck or jaw?

Michele

.

27

Hey Gizmo, Sounds like you're really going through it and I feel your pain. Yeah, I do have a good neurologist. He was 100% sure I have some form of TN, probably more atypical type2 to "label" it. Diagnosed last August. MRI was postponed because our insurance co-pay was ridiculous - $1200, so after discussing it with him decided to hold off. He said in most cases MRIs are "low yield" for this disease, he didn't expect to see anything from mine, it was more to rule out tumors or MS which he didn't suspect. I know what it is I'm dealing with, it just sucks!!! I'm staying away from meds, I've had problems with allergic reactions or severe side effects for years. He suggested trying tegretol or neurontin but totally understood my decision not to. That's why I was asking about topical gels/sprays etc. for the mouth pain. I hope you get relief soon too, this is no fun at all. Take care.

gizmo said:

I have had terrible burning in one tooth for 1 1/2 years. I also get the burning sometimes on my palattte and upper and lower gums the same time I have the tooth burning. Last weekend I had the burning in the tooth and gums continuous for over 2 days. It feels like there is a fire in my mouth. When the tooth burns, which is every day now, it doesn't stop. I have seen several endodontists, 2 oral surgeons, 2 nueros and 2 oral/facial pain doctors. It is not coming from the tooth although it sure feels that way. I have been told it is nueropathic pain, atypical facial pain, myofascial pain and TMD(which is like TMJ but in the muscles) They say it could be TN but nobody comes up with a definite diagnosis. I don 't get any shooting pains, just the burning. I have tried lidocaine oral 2% but it doesn't help. I asked the oral/facial dentist about a stronger lidocaine but he is hesitant to give it to me because he says it can sometimes burn the gums. I have read that a lot of people get relief from it. Have you tried any meds? Do you see a nuero? I have tried several meds but have not gotten relief. My nuero wants me to take Lyrica but I am afraid of the side effects. I might try accupuncture or I might give in and try the Lyrica. I know what you are going through and if you haven't been to a nuero I suggest you see one. I am going to another nuero in the hopes that he will be more experienced in diagnosing TN and ATN. I also had an MRI and MRA which were both negative. This is what a nuero would probably recommend you have. I am sorry you are having such pain. I hope you find something to help you. Gizmo

28

Oh yes I can relate! Before my MVD one of the best tricks I had for teeth pain was to swirl warm water in my mouth. Swirl between lips and teeth. Anywhere the pain was. It never took the pain away completely but it did help. Rather like a birth pool when in labour I guess.

Needless to say I drank a LOT of water.

I tried capsaican cream on cotton wool placed in my gum. For me this was the WORST thing I could do and ended up in hospital in uncontrollable agony. But for others I've heard it works.

Best of luck. The drugs are a curse and can only do so much. I hope your doctor is supportive and considering surgery.

29


Sarah and Lynn, thank you so much for your posts. Just yesterday I had the final permanent filling to the second root canal in the same tooth. Still having pain. It began 13 months ago on Christmas morning. I have bruxism and use a night guard to sleep but I know I still grind my teeth during the day. The 2012 holiday season was particularly hard because my mom died on Thanksgiving night after a years long battle with Alzheimer's. I was totally stressed at Christmas and didn't even want to have any holidays. I gritted my teeth to get through it (literally) and woke up with the pain in my tooth. Saw a dentist who ground the affected down a bit. Didn't help. I went back to dentist about 6 weeks later and he did a root canal. Turns out I needed it but I'm not sure have my general dentist do a root canal was the best decision. He seemed capable but...in September I visited the LSU School of Dentistry to speak to a doc about Burning Mouth Syndrome. He referred me to an endodontist to eliminate the obvious possible causes of the pain. Another root canal and $1800 later (I don't have dental insurance), I am still in pain. The endodontist said that the general dentist who did the first root canal didn't drill far enough down on one prong. Now the general dentist showed me an x-ray. He said it appears that the endo pushed the filling material farther down inside the prong into the surrounding tissue. He thinks the material is causing my nerve/tissue to be inflamed and put me on Keflex. He said the material will dissipate over time and that it will not be any problem to me. Also said it might take as much as 3 months for this to happen. I told him I've been suffering for 13 months so what's another 3. My pain is mainly in the gums around that tooth and along the side of my tongue as well. I don't have it first thing in the morning when I wake up. By the time I get to the bathroom, it has started tingling. Then the tingling turns to stinging, the stinging to burning. By evening, I ready to yank the tooth out with a pliers. I've tried neurontin, didn't work, maybe not high enough dosage. Tried Lyrica, no help. I'm writing because I'm just so relieved to know that I'm not the only one and that I'm not crazy. Oh, and I also take Xanax when I'm jittery, which is almost all the time. It relaxes me a little but I don't like to take them when I'm already tired and have to work. Sorry we are all on this board together. I'm hanging in there and you guys have given me some options to talk to my docs about. Thanks again.


Obsidian said:

Thanks everyone, Now I've got some new things to try :) Today facial pain is creeping back. I think maybe the tooth pain is always the same, but my perception of it is changes when other areas are more at rest. This is certainly a crazy way to live. Wish I could take meds but not an option, have horrible reactions to just about everything. So topical stuff is the only thing for me. I take 1 extra strength tylenol every night - it doesn't to anything for the pain but helps with sleep. Not great for the liver I've heard, but I asked the neuro and he said it was ok. Anymore than that and I can't keep it down. Sigh ....

Thanks for all the support. I rarely mention this to family or friends anymore, no point really. Nothing anyone can do and I get sick of listening to myself so I'm sure they do too.

30

Hi, Sarah. Are you now pain-free after MVD?



Sarah Hilton said:

I had 4 root canals on one tooth before I was diagnosed. I have heard this several times from those that I support when people call me asking about MVD which I had almost 3 years ago.

My symptoms were very similar to yours. Please free to email me with questions, hiltonsarah@rogers.com

Take care.

sarah

31

Gizmo,

Unfortunately, I’d have to say my Gamma surgery helped the tooth pain, the patches help more with the “lightning” that went down the side of my face. Giving up anything to eat or drink that is extremely hot or cold helps a Huge amount with the teeth problems as well… Good luck



gizmo said:

Hi snowbomb 63, do the patches help the burning in your teeth? I only get the buring in my toooth and gums, nothing on the outside of my face. I was wondering if putting a patch on the outside of my face would help the inside Gizmo.

snowbomb63 said:

Hi, so sorry to hear about your pain. I suffered the same way. I went from dentist to dentist, certain I needed a root canal, but they didn’t find a problem. It kept getting worse though until it became apparent it was more than a tooth as the pain shot down my face and to my chin. I had gamma surgery which helped quite a bit, but I also sleep with lidocaine patches on my face. Those patches have almost put me into remission, they are a godsend for me. The lidocaine gel you rub on is short acting, but the patches work 12 hrs if you wear them 12 hrs at night. Best of luck!!Hi

32

I have had ATP/TN2 for decades -- and one episode of TN1 (sharp pains in the side of the head) at the same time as I was experiencing toothache on the same side as the head pain, top tooth and bottom tooth. The dentist said I had TN1, set off because my bite was off. He ground the teeth until the bite was fixed and told me I would be OK. I thought he was nuts... Both pains disappeared that very evening. That was simpler than a root canal! Of course, I still have the monster pain of TN2, but now I know what TN1 feels like and I never want to feel that again.

33

Hello Obsidian and everyone out there suffering the torturous agony of TN or any other facial pain condition. My life and that of my whole family has been totally destroyed by this living hell. My Atypical TN was brought on after oral surgery 22 years ago. I was in constant extreme pain almost 24/7 for 13 years, through my front canine tooth and right side of face. I tried every drug going and my family even helped me with the cost of seeing an expert surgeon for surgery abroad, all unfortunately to no avail, nothing simply nothing relieved the pain not even morphine. I was in such a desperate state that I would have cut both my arms and legs off just to be out of this pain. When I finally realised that no mainstream medicine or surgery was truly going to help me I started to look into alternate therapies. I tried just about everything, cranial therapy, reflexology, reiki, acupuncture but although relaxing, none of these addressed the severe pain I was in.

Anyway the point of telling you all this is that three years ago my cranial therapist suggested I saw a HOMEOPATH (ironically the last thing left to try, so my last hope really). I can truly say that he has saved my life. I suggest to all out there if they can possibly go and see an experienced classical Homeopath and be prepared for what is likely to be a long, yet deep and gentle journey towards healing. Homeopathy works at a very deep level and is a very holistic approach, please don't be put off, if it can help me, it can help anybody.I now suffer just an occasional flare up of my symptoms, maybe for a day every couple of months, very different from 24/7. I have been so astonished to see what Homeopathy has done for me that I am now in my second year training to be a Homeopath myself and am passionate about it and have a massive desire to be try to help others in the future when I am qualified.. Not bad for someone that was incapable of even getting out of bed to make a cup of tea for all these years.

I am so sorry for all those that have not found any relief from their TN yet. Please try and stay strong and don't rule out HOMEOPATHY until you have given it a fair go, IT REALLY DOES WORK.

Warm wishes and please let me know how things go for you.

Lucy

34

My friend who lives far away credits a homeopath with "curing" myasthenia gravis and shrinking a tumor her Western doc wanted to biopsy. I wouldn't know whom to use here where I live. Could you clarify whether this treatment would require all prescription meds be discontinued before treatment? Would that also include drugs for other rather serious conditions? My wife keeps pushing it, but she doesn't know the pain and the risk?

35

Hi thehoward, I think you are very wise in being cautious about withdrawing from any of your current medications. It may be worthwhile dsicussing with your doctor and seeking out a homeopath who would be willing to work in conjunction with your own doctor. At least that way you will be being monitored and any risks could be managed appropriately. You may find some medical practices also have alternative medicine providers co-located, they may be a good place to start. I have a doctor, a neuro, spinal surgeon and a chiro in what I call my "wellness team" but I make sure they all talk to each when needed and they all know what the others are doing. You may be able to set up a similar thing yourself with your care providers. All the best :)

36

Thanks, Cleo. I will be burning up (pun intended) the phone line to both the endo and the Sch of Dentistry spec tomorrow. Will update you.

Cleo said:


SuzyQ, You need to find out what the material is that's been shoved down into the nerve. the tooth needs to be removed asap. its a permanent fixture in your jaw right now. anti biotic isn't going to make it disappear

Sarah and Lynn, thank you so much for your posts. Just yesterday I had the final permanent filling to the second root canal in the same tooth. Still having pain. It began 13 months ago on Christmas morning. I have bruxism and use a night guard to sleep but I know I still grind my teeth during the day. The 2012 holiday season was particularly hard because my mom died on Thanksgiving night after a years long battle with Alzheimer's. I was totally stressed at Christmas and didn't even want to have any holidays. I gritted my teeth to get through it (literally) and woke up with the pain in my tooth. Saw a dentist who ground the affected down a bit. Didn't help. I went back to dentist about 6 weeks later and he did a root canal. Turns out I needed it but I'm not sure have my general dentist do a root canal was the best decision. He seemed capable but...in September I visited the LSU School of Dentistry to speak to a doc about Burning Mouth Syndrome. He referred me to an endodontist to eliminate the obvious possible causes of the pain. Another root canal and $1800 later (I don't have dental insurance), I am still in pain. The endodontist said that the general dentist who did the first root canal didn't drill far enough down on one prong. Now the general dentist showed me an x-ray. He said it appears that the endo pushed the filling material farther down inside the prong into the surrounding tissue. He thinks the material is causing my nerve/tissue to be inflamed and put me on Keflex. He said the material will dissipate over time and that it will not be any problem to me. Also said it might take as much as 3 months for this to happen. I told him I've been suffering for 13 months so what's another 3. My pain is mainly in the gums around that tooth and along the side of my tongue as well. I don't have it first thing in the morning when I wake up. By the time I get to the bathroom, it has started tingling. Then the tingling turns to stinging, the stinging to burning. By evening, I ready to yank the tooth out with a pliers. I've tried neurontin, didn't work, maybe not high enough dosage. Tried Lyrica, no help. I'm writing because I'm just so relieved to know that I'm not the only one and that I'm not crazy. Oh, and I also take Xanax when I'm jittery, which is almost all the time. It relaxes me a little but I don't like to take them when I'm already tired and have to work. Sorry we are all on this board together. I'm hanging in there and you guys have given me some options to talk to my docs about. Thanks again.


Obsidian said:

Thanks everyone, Now I've got some new things to try :) Today facial pain is creeping back. I think maybe the tooth pain is always the same, but my perception of it is changes when other areas are more at rest. This is certainly a crazy way to live. Wish I could take meds but not an option, have horrible reactions to just about everything. So topical stuff is the only thing for me. I take 1 extra strength tylenol every night - it doesn't to anything for the pain but helps with sleep. Not great for the liver I've heard, but I asked the neuro and he said it was ok. Anymore than that and I can't keep it down. Sigh ....

Thanks for all the support. I rarely mention this to family or friends anymore, no point really. Nothing anyone can do and I get sick of listening to myself so I'm sure they do too.

37



SuzyQ said:

Thanks, Cleo. I will be burning up (pun intended) the phone line to both the endo and the Sch of Dentistry spec tomorrow. Will update you.

Cleo said:


SuzyQ, You need to find out what the material is that's been shoved down into the nerve. the tooth needs to be removed asap. its a permanent fixture in your jaw right now. anti biotic isn't going to make it disappear

Sarah and Lynn, thank you so much for your posts. Just yesterday I had the final permanent filling to the second root canal in the same tooth. Still having pain. It began 13 months ago on Christmas morning. I have bruxism and use a night guard to sleep but I know I still grind my teeth during the day. The 2012 holiday season was particularly hard because my mom died on Thanksgiving night after a years long battle with Alzheimer's. I was totally stressed at Christmas and didn't even want to have any holidays. I gritted my teeth to get through it (literally) and woke up with the pain in my tooth. Saw a dentist who ground the affected down a bit. Didn't help. I went back to dentist about 6 weeks later and he did a root canal. Turns out I needed it but I'm not sure have my general dentist do a root canal was the best decision. He seemed capable but...in September I visited the LSU School of Dentistry to speak to a doc about Burning Mouth Syndrome. He referred me to an endodontist to eliminate the obvious possible causes of the pain. Another root canal and $1800 later (I don't have dental insurance), I am still in pain. The endodontist said that the general dentist who did the first root canal didn't drill far enough down on one prong. Now the general dentist showed me an x-ray. He said it appears that the endo pushed the filling material farther down inside the prong into the surrounding tissue. He thinks the material is causing my nerve/tissue to be inflamed and put me on Keflex. He said the material will dissipate over time and that it will not be any problem to me. Also said it might take as much as 3 months for this to happen. I told him I've been suffering for 13 months so what's another 3. My pain is mainly in the gums around that tooth and along the side of my tongue as well. I don't have it first thing in the morning when I wake up. By the time I get to the bathroom, it has started tingling. Then the tingling turns to stinging, the stinging to burning. By evening, I ready to yank the tooth out with a pliers. I've tried neurontin, didn't work, maybe not high enough dosage. Tried Lyrica, no help. I'm writing because I'm just so relieved to know that I'm not the only one and that I'm not crazy. Oh, and I also take Xanax when I'm jittery, which is almost all the time. It relaxes me a little but I don't like to take them when I'm already tired and have to work. Sorry we are all on this board together. I'm hanging in there and you guys have given me some options to talk to my docs about. Thanks again.


Obsidian said:

Thanks everyone, Now I've got some new things to try :) Today facial pain is creeping back. I think maybe the tooth pain is always the same, but my perception of it is changes when other areas are more at rest. This is certainly a crazy way to live. Wish I could take meds but not an option, have horrible reactions to just about everything. So topical stuff is the only thing for me. I take 1 extra strength tylenol every night - it doesn't to anything for the pain but helps with sleep. Not great for the liver I've heard, but I asked the neuro and he said it was ok. Anymore than that and I can't keep it down. Sigh ....

Thanks for all the support. I rarely mention this to family or friends anymore, no point really. Nothing anyone can do and I get sick of listening to myself so I'm sure they do too.

38



thehoward said:

My friend who lives far away credits a homeopath with "curing" myasthenia gravis and shrinking a tumor her Western doc wanted to biopsy. I wouldn't know whom to use here where I live. Could you clarify whether this treatment would require all prescription meds be discontinued before treatment? Would that also include drugs for other rather serious conditions? My wife keeps pushing it, but she doesn't know the pain and the risk?

39

Hi, thehoward, in answer to your question , any properly qualified homeopath would not dream of taking anyone off or reducing any meds, as this could obviously be extremely dangerous. The aim of homeopathy is to really get to the root of the whole condition and to treat the person in a very holistic way. Any decent Homeopath would only ever reduce medication in conjunction with discussions with the patients GP and at the appropriate time.This would only be after the correctly indicated remedy has started to work its magic and the patient is in a stable enough condition to be able to have his medications reduced by his GP. It is however true to say that very strong conventional medicine can make healing a whole lot more challenging for the patient and Homeopath, but please be patient and give it a go if you possibly can. All the best Lucy

40

I don't get too much tooth pain anymore, but the last couple of weeks it has been horrible. I had an MVD that got rid of most of my pain, but I have something else going on neurologically or auto-immune that I am still waiting for a diagnosis...I think the fact that I am taking a huge amount of Prednisone is actually causing the pain,and I also have horrible allergies....I did find one thing that actually calms it down, I'm not sure where you live, but Walgreen's pharmacy has a tube called "Intense Toothache Pain Relief" and it works wonders. I have put it on a few times today and it really calms the pain down for at least an hour or so.

I hope you find something that works and feel better soon

Wendy/crashgirl