Well I had typed my whole set of questions and my laptop crashed. :(
My neuro said you cannot have TN in more than one branch of nerves at a time.
My pain started in my ear- lead to my face- I had a root canal and it exploded. Left side only.
My family doctor ordered a compounded ointment that contains
Ketamine
Baclofen
Cyclobenzaprine
Gabapentin
Orphenadrine
You use this on your face 3-4 times a day. I have used it 2. When I use it- my teeth quit hurting... not feeling like I want to yank them out. My face feels --- BETTER. The medication goes right to the nerve-- . Over time you reduce the Gabapentin and other drugs and just use this. It does leave me-- loopy right now-- I plan to ask about this Tuesday.
It has helped me a lot.
My pain is THROBBING- . It aches.... all of the branches on the left side- like ATN (from what I have READ- on wikipedia and on other places)- wind does not bother it- but it never STOPS. The bone under my eye throbs- a spot under bottom lip--- my ear-- on the inside-- and it never STOPS ringing-- until today. It isn't exactly shocking pain- just THROBBING-- I FEEL LIKE I AM DYING PAIN-- on the left side of my face....I have severe pressure behind my left eye and beside the left side of my nose-- Like in the photo of this nerve. The pressure gets really bad... behind my eye.
This will be the second time I've seen this neuro.... He did not mention ATN..... said I didn't have TN- but didn't feel my face--- didn't order MRI.....
My root canal and "pointed" tooth-- were killing me-- until this compounded cream..
Can anyone w/ ATN please tell me how this feels --- for them? does it hit ALL branches of the nerve? Leave you BED RIDDEN??
THROBBING pain in the ear- face- bones in face- teeth-- ...endodontist wants to hit me with another root canal... I don't think I needed the first one.
Any information-- I could share w/ the neuro -- or your own experiences w/ ATN would be appreciated. I have had 2 docs say I had trigeminal-- (ER DOC AND FAMILY DOC)-- and 2 say no (NEURO AND ENDODONTIST)
If he says NO again-- I guess it is doctor shopping time. I don't know what else to do- but after this cream has helped- I am not sure what exactly what to think---
only draw back w/ this cream-- the loopy feeling it leaves you with and confusion a bit- but they can adjust this.... the dosages in the ointment so you are not so loopy.
First off, I'm really happy that the cream is helping! I hope you continue to do well on it.
I think you'll find several members on here who have TN or ATN in several branches of the trigeminal nerve, sometimes they get both TN and ATN and sometimes even both sides of their face is affected. This makes me think that your neuro perhaps doesn't have that much practical experience with this type of facial pain.
My ATN started with a dental infection which spread out too far into the jaw bone. From there on it's been several apico surgeries and finally a biopsy which showed no signes of residual infection. The spot still hurts, sometimes it feels as if someone's twisting a knife where the wound used to be, sometimes it's just dull boring ache with tension in the surrounding muscle tissue. I have now occassional pains on the opposite (upper right) side of face too after I had a molar tooth removed, but it's not this bad (it's mostly aching pain and the spot doesn't feel so "pathological") and I keep hoping it will calm down. I get occassional twitches in my right eye, which is worrying but it doesn't hurt.
Like you, I have doubts as to what exactly is it that's happening to my face; I kept getting surgeries because I didn't believe it was ATN and the dentists didn't believe in this type of pain or thought it extremely unlikely.
I think MRI is a standard procedure for people with facial pain. You said it yourself, how can he be sure that you don't have other condition causing your pain? But I´m not familiar with how the health insurance works in the US, in my country we pay compulsory insurance and our system is based on solidarity health care, so it´s normally not a problem to get these done.
ATN is very tricky, after all this time and surgeries and even after the biopsy I have days when I think there must be something there, like an infection, teasing the nerve, but there very likely isn´t. Like you, I had dozens, maybe close to a hundered x-rays done because there were times in the past when I was at the dentist´s office every week....I was concerned about the amount of radiation I was receiving but the doctors told me that it´s the same for people who fly frequently so there´s no need to worry.
I don´t know your neuro, beekeeper, and this is a personal decision, but maybe you should consult someone else who´s more versed in facial pain? Take care,
Oli
beekeeper said:
Dear Oli,
Yes, I have had 2 doctors say I have TN - one retracted this after I saw the neurologist--...
The ER doc had no doubts. The endodontist said- no way... but how would he know what my
life is like for me at home? I drug myself to get to the endodontist and home w/ xanax or
anything that will allow me to get there and back.
I am very sorry about your surgeries. My endodontist wants to put a root canal
in the tooth beside the tooth that is already has a root canal- and I guess at this point
I don't want anyone drilling into my head again - dental wise- unless someone can give
me a better idea as to what is happening. The teeth x-ray as fine-- . They have been
x-rayed so many times, I am surprised my head doesn't glow in the dark.
I feel pressure though in the tooth that does not have a root canal- ... always pressure.
It hurts... I just don't know if it hurts from TN or hurts b/c it does need a root canal.
This whole thing has turned into a big mess- and I agree- I don't think my neurologist
has seen many cases of TN or ATN--- ... I lost a bit of faith in him when an MRI wasn't even
ordered-. I know this does not show TN always- but it could have ruled other things out.
I was lucky in a way, my dentist said she thought I had something neurological going on when I first went to her. I thought I had a bad tooth , but it kept moving around. After seeing her, I went to two different doctors who said it was a sinus infections. Well I have had them all my life and knew they were full of it. I went to the ER when it got so bad I could not stand it, I was getting the electrical shocks non stop for 2 days, and had the boring ear pain and tooth pain, I wanted to die. Well ER told me I was a drug addict??? I finally called a friend who is an ER nurse, she had me go to her doctor and he finally diagnosed me.
I have both TN and ATN on the right side and occasional on the left, I had an MVD in October of 2012 and I am pain free from TN!!!
Moral of the story: you know your body, if you think the doctor is wrong, they they most likely are! It may take a while to get one that works for you, but keep trying until you are comfortable with someone.
Dear BeeKeeper,
Please find a new Neuro and Endodontist !
You can MOST definitely have TN in more than one branch.
If your tooth X-ray is clear there should be no need for a root canal.
I had one tooth that I swore needed a root canal, X-rays were clear, but I could pinpoint the pain to that one tooth. My dentist said it must be TN, he was right.
After my mvd my tooth pain from TN as well as my other TN pain is gone.
You need to find a doctor or Neuro who has experience with TN or at least is willing to learn about it in order to help support you.
Contrary to what doctors think, there is no cookie cutter outline of TN, no one size fits all.
Trust your instincts, don’t settle for less, don’t quit until you find support. Positive vibes…
((( hugs ))) Mimi
You know what-- I have only seen this neuro ONCE! Endo has been really nice... I have some gum recession on that tooth- but my teeth are great.
I am still so curious as to why he did not order an MRI.
In a magazine we get -- this month-- there is an article about how to know if you have a bad doctor......
Do neurologists usually feel around on your head if you suspect you have TN??? I know that sounds DUMB-- but mine did not touch my head-- just normal neuro exam-- "following my finger-- walk down the hall"----- etc......
I am so frustrated and down... Somedays anymore, I don't get out of bed.
Thank you for your help.
I stay confused a lot- excuse any grammar mistakes.
I understand how you feel..I have severe pain in my bottom tooth and pains all over my mouth..I've had several teeth pulled but the pain just went to the next tooth..I've been to 4 dentists who all say there is nothing wrong with my tooth..I went to a neurologist who didn't touch my face either..Just made me do small exercises like follow his finger, tapped my knees, etc..He then told me it wasn't neurological but dental...so I'm stuck with tooth pain since the dentist won't help me and the neurologist just gave me Amitriptyline because I started crying and asked what I was supposed to do? So that is where I am right now..I too would just like to stay in bed...It is depressing to say the least...I hope you get answers and don't give up...Feel better soon
I currently have TN2, I was SO LUCKY that both the dentist and endodontist, both said nope, ya got something else going on. So after my internist sent me to one more doctor-an ENT- who didn't find anything, the internist said yep, TN. When last fall I suddenly switched over to TN2, I don't think he had heard of it, but was willing to write a script of amiltriptyline (I'm sure I'm spelling it wrong). Just this week I gradumenated (sic) to a neurologist who sent me for an MRI and put me on Carabamizepine. (another misspelling I am sure) after a week, my pain is almost gone. Have no idea how long that will last, but I will enjoy it while I can. My neurologist did not touch my head. Heh, maybe she had people slug her in the past for touching a pain filled head. Your family doc sounds like your best bet at the moment. We are such special snowflakes with this crappy condition, very rare, so don't be afraid of bringing to your doctors' attention anything you learn from this forum. I'm sure glad I've paid attention to this forum.
The compounded ointment I am using on my face helps a great deal... just knocks me out most of the time. I don't know if I will get an exact diagnosis at this point in the game... I have gathered information- and I can take it to the neuro but it doesn't mean he will listen. If he doesn't, I have appt. w/ another neuro in a week or so. Family doc said not to go-- but she isn't in my shoes either. xx Thank you for the information. I can't take tegretol- but if the neuro would just feel parts of the left side of my head--- and would hear my reaction--- I think that might help a lot. LOL. I don't think I would slap him- but who is to say? haha. xx
lillyh said:
Dear Beekeeper,
I understand how you feel..I have severe pain in my bottom tooth and pains all over my mouth..I've had several teeth pulled but the pain just went to the next tooth..I've been to 4 dentists who all say there is nothing wrong with my tooth..I went to a neurologist who didn't touch my face either..Just made me do small exercises like follow his finger, tapped my knees, etc..He then told me it wasn't neurological but dental...so I'm stuck with tooth pain since the dentist won't help me and the neurologist just gave me Amitriptyline because I started crying and asked what I was supposed to do? So that is where I am right now..I too would just like to stay in bed...It is depressing to say the least...I hope you get answers and don't give up...Feel better soon
My dentist sent me to the neurologist ASAP. Got me in w/in two weeks- and family doc had it for 3 months away.. It doesn't seem to have done any good in my situation-- Neuro still-- seems not open-minded- but will know more next visit.
Thank you.
crashgirl said:
I was lucky in a way, my dentist said she thought I had something neurological going on when I first went to her. I thought I had a bad tooth , but it kept moving around. After seeing her, I went to two different doctors who said it was a sinus infections. Well I have had them all my life and knew they were full of it. I went to the ER when it got so bad I could not stand it, I was getting the electrical shocks non stop for 2 days, and had the boring ear pain and tooth pain, I wanted to die. Well ER told me I was a drug addict??? I finally called a friend who is an ER nurse, she had me go to her doctor and he finally diagnosed me.
I have both TN and ATN on the right side and occasional on the left, I had an MVD in October of 2012 and I am pain free from TN!!!
Moral of the story: you know your body, if you think the doctor is wrong, they they most likely are! It may take a while to get one that works for you, but keep trying until you are comfortable with someone.
The ER doctor I saw the first time said- TRIGEMINAL NEURALGIA. She had no doubts at all.
Family doc agreed-- until neuro said NO--- now she has recanted her initial dx. Isn't that lovely?
I don't know... Yeah, you do break down in the office- it is so hard not to! Everyday is so hard- and everyday-
it beats you down........
I don't know what to do about this tooth--- as the ointment continues to hit the nerves-- I will know more, I think....
If I can say- 600 mg of Gabapentin and this ointment w/ Baclofen and Ketoprophen -- has essentially stopped it-- (for brief periods of time-- learn more about this stuff every day) but I spend about 18 hours in bed sleeping b/c of the facial ointment... well..... He will have to admit something is going on... the 600 mg is really pushing it for me due to my bipolar stuff... but I dont want him saying-- YOU ARE NOT ON ENOUGH MEDICATION-- to even know--- if it would help!...........ugh
I am so sorry-- I am essentially in the same boat that your in.
xx
beekeeper.
lillyh said:
Dear Beekeeper,
I understand how you feel..I have severe pain in my bottom tooth and pains all over my mouth..I've had several teeth pulled but the pain just went to the next tooth..I've been to 4 dentists who all say there is nothing wrong with my tooth..I went to a neurologist who didn't touch my face either..Just made me do small exercises like follow his finger, tapped my knees, etc..He then told me it wasn't neurological but dental...so I'm stuck with tooth pain since the dentist won't help me and the neurologist just gave me Amitriptyline because I started crying and asked what I was supposed to do? So that is where I am right now..I too would just like to stay in bed...It is depressing to say the least...I hope you get answers and don't give up...Feel better soon
So sorry you are no further ahead and still wondering if it’s ATN or if you need a root canal. Don’t hold too much faith in just one neuro. Even they hardly ever deal with TN or ATN. I think it’s fairly standard to have your head touched to see if it provokes a pain response, etc. the first neuro I saw was a real dink and even the second one (the one I see now and really like and find thorough) diagnosed TN and then raised her eyebrows and looked at me and said Atypical with a questioning inflection and I was the one who nodded and said yes, atypical.
I have as much ear pain and pain in the back of my head and throat as in my face. My shocks were deep inside and came in volleys like machine gun fire but they have stopped. We are all so different.
I don’t lie in bed most of the day I keep moving very slowly or drape myself over one piece of furniture or another. I can’t touch the back of my head to a pillow or lie down after I wake up. Sometimes I get about 20 minutes or upon waking without the positional pain and I make the most of it by doing as many stretches as I can fit in before the burn begins. My daughters call it “Mummies Boga” and if they are visiting me or I am visiting them they bring me a cup of tea in bed and a glass of warm water to take my meds. This is heavenly! Such a small comfort and it means so much.
I hope someone brings you a cup of tea or glass or water or whatever from time-to-time.
I am surprised, looking back, that the ER doctor said this. I didn't realize TN was such a rare thing- until I started looking for someone to help me treat it. As I said, my family doctor said it was TN-- then when the neurologist said NO- she recanted. She _had_ set me up to see another doctor but the wait was 3 months- I never canceled and they have my paper work. I don't know what will happen with this neurologist on the 3rd--- but the family doc- said not to see her. It's a real conundrum.
I just still don't want a root canal if it isn't needed. What if he does this- and it turns out it wasn't needed? We are NOT rich. It could make the pain WORSE..... I still am not sure why he didn't order an MRI before handing me pills first.
I guess I will know more on the 3rd. I'm taking my mom back-- I have no one else. I don't care how it looks-. If I did have a husband -- I would take HIM back-- but I don't. My sister wouldn't go...... so she is all I have.
I have questions about this teeth business. I suppose the biggest is- the root canal was done in January. It has been x-rayed multiple times- They all say it is normal. It is the tooth beside it that presented w/ pain to begin w/ but when they did the tapping it was the tooth beside it that caused all the pain. (primary left molar) So- I went in w/ the frontal left "pointed" tooth hurting- but the tooth beside it HURT when was tapped and got the root canal. The "pointed" tooth still hurt and has MINOR gum recession. When I saw the endodontist and he did an x-ray of this tooth - it looked FINE. Both teeth look fine when x-rayed... but the -- I don't know the clinical name of this tooth- "pointed" tooth hurts all the time- and presents w/ pressure too-- up into my nasal area.
Before doing a root canal on this tooth, he wanted to give it some time to settle down -- . He leaves that medicinal packing in for ONE MONTH. The idiot who did my other root canal left it in a week. I could barely tolerate the week-- it was so nasty it made me sick to my stomach. I am wondering- couldn't a crown be done???
I have read SOOOO much about osteomylitis-- I DONT WANT THAT--- but I don't know what to do at this point in regards to my teeth. I really don't. I majored in literature--- not teeth....... I feel like a dog chasing it's tail......
If the neuro will order an MRI-- rule out infection in my face-- then I will get the root canal-- but not until then......
I am truly beginning to wonder if I will ever have any quality of life back at all now.
I also have cognitive issues.... If indeed it was THIS TOOTH that needed this root canal-- God only knows how long it's needed it. It has not showed in x-rays if it does need one. The gum b/t these two teeth look a tad swollen to me-- but not to any of the dentists I have seen. I have seen 3 dentists and one endodontist....... so that is how it has played out thus far.....
What would you do?
beekeeper.....
Cleo said:
Gum recession is a good indicator that infection has spread beyond the tooth. Infection left untreated is what causes abcess. The only choice other than root canal is extraction. Seems like since your other post xray of the other root canaled tooth shows nothing abnormal then it must be fine or they would not hesitate to do a second root canal, apiceo or extraction....
I had ATN and TN on all 3 branches. It most definitely DOES happen. I'm glad the compound cream is working for you. It unfortunately did nothing for me. Definitely try a different neuro.
When you have only seen that neuro once-- hard to get your doc to send you to another----all require referrals.
This is something I never thought I'd be dealing with... I keep bumping up my gabapentin-- b/c they said it takes 900 mg to even get any pain relief-- and it sure isn't helping my depression.
I just don't want to get the business from him when I go on the 3rd-- about not being on enough to manage pain.
I got my second referral when it was clear to my GP that the recommendations of the first neuro were not working, I.e. serotonin syndrome from cymbalta and tramadol. My GP also believed there was more going on than he thought. It’s tough when your primary care physician holds all the cards…
The process of finding the right pain relief can be long and miserable and sometimes downright dangerous. But you need to feel like you have some control too. Write everything down. Do you have a friend to go with you to the the upcoming appointment?
I have pressure like you talk about but sometimes it feels like it's my whole head! That's why I was so hard to diagnose. I always feel pressure in my ear and the right side of my face but sometimes it just feels like it's everywhere. When it's behind my eye it's the worst - makes me nauseated. So your symptoms have alot of similarities to mine, Except when I had it in my teeth it would bounce around all over in there so I never thought I had a bad tooth. I couldn't pinpoint a tooth that hurt - it was just everywhere. I don't have it there now as long as I stay on my meds.
And yes, it can definitely be in all three branches at the same time. That's how mine has always been.
I was lucky that my family doctor was willing to prescribe Tegretol to me and that worked right away. I am now on Trileptal (the generic which is too hard to spell) because the side effects were too tough to take on Tegretol.
After I asked to swtich to another type of meds, he sent me to a neurologist that was very young and inexperineced. I'm sure she had never seen a patient with ATN. She didn't agree I had ATN but knew I had something going on with nerves since Tegretol worked. I later asked her what she thought it was and she decided it was ATN then. I had told her about this site and the book "Striking Back". I think she checked into them because she seemed to know alot more than she did previously. Or maybe she found another neurologist to ask. It stinks when you have to educate your neurologist.
Read everything you can and defnitely get the book Striking Back. It has taught me so much!! When I was first diagnosed I read the face pain info page here and all the discussions I could so I could understand more about this. I also joined the ATN group since I pretty much diagnosed myself with that. Do as much reading as you possibly can in between laying in bed or on the couch.
By the way, at night I don't ever lay on my back and I lay almost upright in bed with 5 pillows propping me up. I always lay with my bad side up. This REALLY helps!
It took LOTS of experimenting with timeframe to take meds, foods to eat (very few carbs) and how to lie down before I got this down to keep as many of my symptoms at bay as I could. Good luck!!