Hey everyone! I was just diagnosed with TN six days ago. I just had my medication (gabapentin) increased from 100mg once a day to 300mg twice a day because the pain was so bad. Now the pain is much more manageable with only a slight tingle or ache on occasion with the exception of one tooth. I had gone to the dentist before getting diagnosed with TN, and they said I could have a "potential" infection in one of my molars on the side that I get my TN pain. They shaved it a little bit to "relieve my bite" since I have an open bite. Now that tooth hurts even with medication, but the pain level is not consistent. Should I head back to the dentist or does this sound like TN pain? It is most sensitive when I eat (hot and cold) or if I press it gently with my tongue. I'm new to all of this so I'm not sure how to tell the difference between normal tooth pain and TN just yet.
Erin, I would say do not go back to the dentist! I have heard story after story of dentists doing procedures on people (including me) not realizing the pain comes from TN not a tooth problem. Unfortunately these dental procedures only make things worse. Your pain sounds a lot like mine when I first got TN. I also made the mistake of thinking it was dental because it seems like it is but it was not. I am glad you are on Gabapentin. You can always increase the dose but I would advise you to stay away from the dentist. Good luck!
Hello Windy! Thank you for replying Any suggestions on what to do to manage the pain in just that tooth? And have you learned a way to differentiate between actual tooth pain and TN?
Please do not have dental work on your tooth pain. Everyone with TN starts with an ache in their tooth (teeth) so we think we have a toothache but we don't. It is the beginning of TN pain. The pain will eventually move away from your teeth (tooth) to other areas in your face. I was lucky enough that after 3 visits to my dentist within a 6 months duration that he finally thinks it's TN because after several xrays of each visit, he said my teeth were perfect. I was finally diagnosed after 6 years of wtih TN. Now given that the first 6 years wasn't that bad. The electrical shocks of TN pain came and went fairly quickly then it went into remission for months. Please find a neurologist, he/she will be able to diagnose your more accurately. Good luck.
I was diagnosed in November and yes always the same tooth. I've been to the dentist (it's where I first went before being diagnosed) but luckily my dentist just took xrays and proved all was fine and refused to do anything. It's still where I feel my TN pain the most, especially when I am due a dose. I wrote a very similar post when I joined here then as I haven't got a clue how you tell when you have real tooth problems either. All I can say is that the TN meds (I am on tegretol) do make it better after a while usually and the neurologist said had I got a tooth problem too I wouldn't get any relief from the Tegretol. I tend to find a couple of co-codomol when the tooth pain really aches does help a little, even if its from my proding with my tongue and annoying it rather than really helping! I was also advised by my neurologist that on the Tegretol dose I am on I can have an extra one on days which are bad. So some good days I take just one tablet and other days three, but mostly consistently on two. Good luck getting your balance
Hi Erin, I think the comments below are very good. I think you should forget about it being actual tooth pain. It can take several weeks for these meds to work so I think you should just hang in there for a while. Also the doseage you are taking can be increased quite a bit. Any sort of relaxation techniques that you do or learn can really help and try not to worry, althought that may seem impossibile at times! It will all work out okay eventually.
Please Erin on no account have more dental work done! This "toothache" pain is not toothache....look up atypical odontalgia.Wrap an ice pack in cloth and put on the face side with pain- this will settle the nerve somewhat and give you relief.Normal tooth pain would be relieved by taking over the counter pain killer,paracetamol,ibropufen etc.This type of pain will not relieved by these painkillers.I have this type if facial pain and am on pregabalin and building up slowly as I'm very sensitive to meds.Pregabalin works very well for me at higher doses .Hang in there,you may be on medication forever but hey better than pain! Hugs!
Hi Erin, the only additional advice I can give is that you need to space your dose (whatever drug and whatever dose) as evenly as possible throughout 24 hours, and take it strictly on time (I set an alarm on my phone), that was you have a constant level in your blood and that should help to control the pain. Good luck. Heather
Estoy de acuerdo con Heather en que es esencial que sus medicamentos estén distribuidos de manera uniforme y aunque al principio te pones un poco paranoico y miras el reloj por si te retrasas en tomar una dosis. Tengo los medicamentos de un día ya preparados en un portapíldoras y en cada tapa del compartimento pongo la hora en que se debe tomar y tengo una dosis de emergencia en un pequeño compartimento de un portapíldoras de una pulgada por si llegas tarde a casa o pierdes tu portapíldoras. Elimina todos los pensamientos de "¿qué pasaría si?" o "¿qué haré si no encuentro mis pastillas?". Lleva el pequeño portapíldoras en tu bolsillo cuando salgas. También guardo una dosis en mi coche. Puedes pensar que es una tontería, pero saber que tienes una dosis de medicamentos a mano es una buena sensación. Poner la alarma en tu teléfono es una gran idea. También llevo una tarjeta que TN, UK emite a sus miembros y eso es algo que puedes hacer. Podrías unirte a TNA UK. Busca el sitio en línea y ve qué te parece. Estuve muy agradecida por los chats y consejos cuando me diagnosticaron por primera vez. La tarjeta es buena para llevar porque es del tamaño de una tarjeta de crédito y en un ataque completo puede que no puedas hacer que alguien entienda que estás en dolor y la tarjeta básicamente dice: Tengo Neuralgia del Trigémino y estoy en dolor, ¿puede llevarme a un área tranquila y segura hasta que me recupere. Es suficiente para darte un poco más de seguridad cuando salgas.
Otra cosa con la que estoy de acuerdo es con las visitas al dentista. No todos los dentistas tienen un buen entendimiento de la NT. Ellos están al tanto de ella y saben lo que es, pero no saben el efecto traumático y el dolor que sufren los pacientes de NT, así que mi consejo sería ir a revisiones cuando puedas y en casa mantener una buena higiene bucal y no usar un cepillo de dientes eléctrico ya que puede desencadenar un ataque por vibración, pero no todo el mundo es igual.
Sorry, but not everyone with TN has the initial pain in their teeth! My own experience it that I was getting steadily worsening 'headache' pain in my eye. This eventually got so bad (and was extending into the side of my nose and then my teeth/gums and I also started getting the shocks and stabbing pains elsewhere) that no painkiller on Earth would get rid of it so I went to the docs and after describing the pain and the after sensation of spikey-footed spider crawling across my eye, nose, cheek and around my lower jaw he said it was TN. I get all the same pains and sensations on both sides of my head and face at different times. I rarely get solely tooth pain!
From the research I've done most TN sufferers do experience the first bout of pains in the teeth and gums, fewer experience the first bouts across the lower jaw and around the ear and fewer still experience the first bouts in the eye. One of my colleagues is an Ophthalmic nurse and she says that many people attend eye clinics or A & E departments with such pains in their eye(s) and are diagnosed with TN.
Still, your advice about avoiding dentists is good advice and it seems from the posts on this forum that many people visit their dentist and get no joy, relief or correct diagnosis!
Best wishes, and I hope you remain in remission for a long time.
Hey guys! Thanks for all of the awesome responses. After my next dose of meds, I definitely noticed the pain was gone from that tooth as soon as the medication kicked in, even if it only lasted a short while. I have a new question though. Do any of you guys experience dull, bruise-like pain when actually touching the nerve? I need to retake my medication in two hours, but I've noticed after having three bouts of breakthrough pain today that the actual nerve feels sore. It isn't triggering any severe breakthrough pain. It just feels like a sore bruise. Anyone experience this before?
Yes I get that from time to time. I think it is a little bit of ATypical TN. I try to ignore it or take a couple Advil for it. It goes a way after a while. I am just so glad it isn't the electric shocks!
I also went to the dentist and had a tooth drilled but he thought the tooth was fine and had no clue until I saw the dentist who was supposed to fill that tooth. He said it might be TN. I did the research and the pain kept coming back and finally it got so bad I went on a drug that worked well for a few months then stopped. But that gave me time to do the research, find the docs who did surgeries to help, particularly one here who has done many many TN surgeries. Had radio frequency surgery that works for a few years then I have it done again. Had three so far. Tn pain is gone each time but my jaw is a mess. Eating is a joke, can only eat soft things. And have to hold out my cheek so I don't chew/ bite it, but no TN pain. A trade off that I consider worth it because I hated the drugs. After neurontin, I had oxcarbazepine, then Lyrica which worked the best but I was a zombie.
Is Radio surgery different from PSR Rhizonomy? I had Balloon Compression surgery 1 1/2 years ago. I am trying to decide which one I will need again if the pain reoccurs (which I am told is likely). I had one bad break-through pain episode but as of now am pain-free.
Not sure will have to look it up, but the radio frequency is where they stick a needle in your cheek and burn the nerve. It is a simple procedure in the hands of experience. I went right home, only needed a pain med for a night or two and the just Tylenol for a few more. Then that was it. The nerve area becomes and stays numb which is a nuisance but no TN, quick recovery and where they stuck the needle in just had a tiny round band aide on it for a day. The first time HE did it light but the TN came back within a year. Second one lasted two years almost. This one he did hotter so we'll see. I had a slightly sore throat and one dry nostril from it but that is going away. Eating is challenging but I have adjusted and like I said, it is a trade off. I said what do I do if it comes back again?
answer...do it again. They said they did this for a 90 year old so no age limit.
Thanks for answering! It sounds like the radio frequency may last longer for you this time. Do you think the eating will get better? My cheek was slightly numb right after the Balloon Compression but slowly went away and now it is completely normal. The doctor told me the same thing about age. He said he did Balloon therapy every two years on a woman in her 90's. I hope mine lasts longer. I have read it can last 10 years, however I read so many different results. I was curious as to whether radio surgery was the same as PSR which I have read lasts longer than Balloon Compression.
Suena familiar, mis ataques siempre comienzan en mis dientes, específicamente en un diente. Como dijiste, incluso con solo presión suave y sí, es un dolor constante y a veces punzante. El calor parece ayudarme. Una bolsa de arroz caliente en casa y uso "hot hands" cuando necesito salir. ¡Mucha suerte y oraciones para ti!