Hi everyone. I haven't posted b/c I have been so depressed after the neuro appt.
I can't go around seeing 4 or 5 different neurologists hoping to get an answer. We don't have funds to travel- and I don't know anyone around the "GOOD" neurologists... I think this one I was seeing was supposed to be GOOD--- LOL...........
The day I went- I took my mom back b/c the pain had been so bad. I also wanted some one to hear what was said....... second set of ears.....
The PA and Neuro said all they did was give medication (which is not really true- b/c the do testing there-- I just haven't been given the option to have any testing- including an MRI)-- . My mom asked- what you are exactly giving the medication for- what does she have?
He was he wasn't sure- thought it was b/c of trigger point pain..... I asked about the tooth pain and ear pain and such- explained what a lot of other TN patients have and was clearly told - I did not have TN - by both of them.
I was told if I had TN that they would send me to a neurosurgeon RIGHT AWAY........
Besides trigger points- he mentioned ATYPICAL FACE PAIN-- what is this??? I have gotten the impression it is like- there is NOTHING wrong with me- so they label me w/ this. Am I correct??
They are treating this like TN-- I am on loads of Gabapentin------ and on Lithium to fight off the side effects of the Gabapentin....
We don't have the ability to travel to big TEACHING HOSPITALS........
I try not to think about it- but it's hard when you are in pain........
So it went terribly.... I use that ointment on my face- take the gabapentin *which helps some*--- and think WHY DOES IT ALWAYS END UP THIS WAY FOR ME????
i am so sorry to hear your horrible experience..I can relate I have had several bad experiences with neurologist in the last year one told me that I should be thankful that I don't have cancer and I can walk ready I can eat I can talk I cant brush my teeth cant take care of my kids but I should be thankful,,,,I am finally headed to a neurosurgeon that is well respected i hope it gets better for you
Oh dear, you sound so sad. Appointments can so disappointing. My experience is that a neurosurgeon is a few steps down the road. Surgery is a fairly drastic step and if medication can help and you tolerate it then perhaps that is not such a bad suggestion. I think you were wise to take a second set of ears along. I find that I go into appointments with an agenda in my head and if things go differently then I am easily confused. Is the medication working for you? There are a few meds that can be tried. I would strongly suggest getting the TN bible called Striking Back. It has so many helpful tips, hints and strategies. Check it out. Knowledge is power. Right down your questions and concerns and go to your next appt prepared to intelligently argue your case. I hope you find some definite answers to give you peace. Till then I wish you many pain free days.
Go to GOOGLE IMAGES and type in. Atypical face pain. And trgeminal neuralgia type 2 = same… Then search there for trigeminal neuralgia… Print or save the one that is like you… Come back and tell us what you… The expert on you…thinks about what you visually saw!
I have that book-- asked the questions-- I thought should be asked- it was just how-- kind of crass he was-- The answer-- of WE JUST GIVE MEDS HERE... was upsetting. I am going to check w/ my family doc about getting a tenz unit-- I have one tooth really bugging me- it is just PRESSURE-- and that does come from TRIGGER POINTS-- so I am going to talk to my massage therapist about this--- I am just upset about the whole situation.
Patty said:
Oh dear, you sound so sad. Appointments can so disappointing. My experience is that a neurosurgeon is a few steps down the road. Surgery is a fairly drastic step and if medication can help and you tolerate it then perhaps that is not such a bad suggestion. I think you were wise to take a second set of ears along. I find that I go into appointments with an agenda in my head and if things go differently then I am easily confused. Is the medication working for you? There are a few meds that can be tried. I would strongly suggest getting the TN bible called Striking Back. It has so many helpful tips, hints and strategies. Check it out. Knowledge is power. Right down your questions and concerns and go to your next appt prepared to intelligently argue your case. I hope you find some definite answers to give you peace. Till then I wish you many pain free days.
Wow..... I did what you said to do-- Atypical Face Pain and TN2-- are the same when you Google-- the differences I see are w/ the teeth images I see w/ atypical face pain--- they mention myofascial pain and teeth and trigger points-- - I am having teeth trouble--- and myofascial pain........ very interesting.
Kc Dancer Kc said:
Go to GOOGLE IMAGES and type in. Atypical face pain. And trgeminal neuralgia type 2 = same....... Then search there for trigeminal neuralgia..... Print or save the one that is like you.... Come back and tell us what you..... The expert on you....thinks about what you visually saw!
How did you find out what you had? I don't see the point of trying to search out more neuros-- we can't afford it-- just don't know what is going on - how it relates to pain in my teeth..... and what to do about it............ I wore braces as a kid-- and my posture is bad- I couldn't afford to have braces again--- ...... I just don't know what is happening.....
Damaged by Sargenti Paste R/C said:
I also had no luck with neurologists. I don't know what it was with them and me. I know what I have and how I got it and I still found them useless.
When you don't have GREAT insurance-- lots of money--- and can't travel to these specialized places-- you do get really sad. I live in a rural area-- and heaven only knows I won't get an answer here-- in this town..... It makes me afraid the rest of my life will be alllllll PAIN. I slept until noon today b/c of pain....... I just am sad......
I agree with you about not being able to find a specialist in a small rural community..I live in a town like that..And my insurance isn't great and I have no money to pay my 20 % of the medical bills.But I have an awesome female family doctor. she gave me my first prescription for lyrica because she thought I had a neuralgia right away..She is better than the neurologist I saw by far!! I have atypical facial pain(atypical odontalgia) where the pain is just in my jaw and bottom tooth..I'm not on any other meds besides Amitriptyline..Can your family doctor prescribe the medication you need? My oral surgeon said nuerontin is the best for tooth pain caused by neuralgia..He told me if the amitriptyline the neurologist prescribed didn't work I could call him and he would prescribe me the nuerontin..Please don't be sad....You will find something that works for you...
Hi beekeeper,
Sorry that you are still in such awful pain, it must be so exhausting physically and mentally.
I know you haven’t been able to get the right solution yet but is it possible for your doctor to make some calls to specialists?
I know the neurologist I see does phone consultations with people so maybe that is something to consider although I have no idea how expensive that would be or if your insurance would cover it.
I’m not familiar with your health system but are there free clinics with specialists???
Ive had my TN reasonably controlled but over the past 2 months have been dealing with pain on my good side. It started with one tooth and now it feels like the whole jaw. My dentist has suggested acupuncture which I start tomorrow. I’m not really hopeful but he and the endodontist feel the pain is neuromuscular? I just feel like ripping my teeth out if I thought it would solve the problem. It is tough going some days, we all just do the best we can.
Sorry I can’t be of much help, I’m sure others will have better ideas.
Sending you a big cyber hug
Trish
Beekeeper, Red calls Atypical Face pain a wastebasket title given by people who don't really have a full understanding of TN. I feel bad for you that your appointment went so badly. Cost is a huge issue for all members and it's dreadful when so called professionals let us down so awfully.
You are not alone... I have walked away feeling the same way and wondering if sometimes they just want the office call payment. The Gabapentin will help once the doseage is correct. THE MRI IS CRITICAL to see what is going on "in there"
This may sound "crazy" but I use a "Bag" my mother sewed for me filled with 5 lbs of rice and lay it on the effected side of my face. I watch TV with it on, sleep with it on, etc.. it is my constant companion. I DO NOT HEAT IT IN THE MICROWAVE it is just the weight that seems to help.
Real bad times I add an aditional 2 lb bag she has also made.
Can one of teh Neurologists make a referral to a Neurosurgen so you can get an MRI done?
How exactly does this rice bag work? You sew up a 5 pound bag of rice and use it for a pillow? You don't heat it? Just use it as --- like a pillow? Put it under your face/ear? This helps w/ pain?
reneeC said:
You are not alone... I have walked away feeling the same way and wondering if sometimes they just want the office call payment. The Gabapentin will help once the doseage is correct. THE MRI IS CRITICAL to see what is going on "in there"
This may sound "crazy" but I use a "Bag" my mother sewed for me filled with 5 lbs of rice and lay it on the effected side of my face. I watch TV with it on, sleep with it on, etc.. it is my constant companion. I DO NOT HEAT IT IN THE MICROWAVE it is just the weight that seems to help.
Real bad times I add an aditional 2 lb bag she has also made.
Can one of teh Neurologists make a referral to a Neurosurgen so you can get an MRI done?
I said to the neuro's PA--- "So you think this is psychosomatic face pain??" -- I had read that book Striking Back-- . She said NO! NO!..... I said- I have read when you use this title to describe my pain- it means--- you don't really think I have REAL pain essentially..... She was not expecting me to say that..... but I know that is what they thought.
Jackie said:
Beekeeper, Red calls Atypical Face pain a wastebasket title given by people who don't really have a full understanding of TN. I feel bad for you that your appointment went so badly. Cost is a huge issue for all members and it's dreadful when so called professionals let us down so awfully.
Thank you for the kind post. I had an ER doc in the beginning say it was TN- and my family doc believed this- until I saw the neuro--- then she changed her mind... I am on neurontin right now--- it kicks in my bipolar bad-- so I am having to take lithium too --- to offset the neurontin... I haven't been on lithium in YEARS--- but it is all I can figure out to off set this neurontin. I can't take elavil-- it makes mania even worse.... My docs are being --- rude essentially about working to make sure I am on the right dose of this or that... I had to e-mail my shrink like 6 times b/c I knew I needed an increase of lithium... I could tell it make him angry-- I am just tired of the doctors and the whole situation.... I am trying to find someone who does trigger point injections for TMD--- no luck yet. xx
lillyh said:
I agree with you about not being able to find a specialist in a small rural community..I live in a town like that..And my insurance isn't great and I have no money to pay my 20 % of the medical bills.But I have an awesome female family doctor. she gave me my first prescription for lyrica because she thought I had a neuralgia right away..She is better than the neurologist I saw by far!! I have atypical facial pain(atypical odontalgia) where the pain is just in my jaw and bottom tooth..I'm not on any other meds besides Amitriptyline..Can your family doctor prescribe the medication you need? My oral surgeon said nuerontin is the best for tooth pain caused by neuralgia..He told me if the amitriptyline the neurologist prescribed didn't work I could call him and he would prescribe me the nuerontin..Please don't be sad....You will find something that works for you...
Hi beekeeper. I am so sorry you are going through this. It is really unfortunate that so many of us have had to go through this. I had seen 7 neurologists and gone to 4 major headache clinics throughout the US with no success. The only reason I was finally able to figure out that what I had was TN and ATN was because of this site. I told my neurologist what I had. He wasn't 100% convinced. It worked out that my insurance allowed me to see a neurosurgeon and that I was a candidate for MVD. At my last neuro appt before surgery my neurologist told me he wasn't convinced that TN/ATN was my problem and that surgery was the way to go. (I had already tried Neurontin, Topomax, Elavil, and countless of other medications for over 10 years.) I am so glad I didn't listen to him! It's sad to say, but I never found a neurologist in 10 years that ever even considered TN and/or ATN as my diagnosis and now that I have been diagnosed, I still don't have a neurologist that really understands it. (And he's a "headache specialist".) I spent so many years in pain, wasted so much money, put so many medications is my body, tried so many therapies to no avail. I used to get terrible tooth pain. I spent thousands of dollars getting root canals and trying to fix them and that did nothing to help the pain. The surgery was finally what helped my pain.
Don't give up. Try to have your mom read as much as she can about TN so that she can help you. I needed so much help from my husband and mother. I would take them with me to my doctor's appointments because it was so difficult sometimes for me to express how I was feeling due to the pain and the fogginess from the meds. The more help you have, the better.
Like someone else mentioned, see if you can find a specialist that will do a phone or maybe a video consult with you since you live in a rural area. Also, university hospitals can be great, but my surgeon was in a small hospital but he was amazing! He really understands TN, ATN, GN, etc.
My mom has been a lot of help... This began in November- so I guess compared to other people's postings-- I am kind of just getting on the search for answers. As I said the ER doc said it was TN when I went in w/ severe face and tooth pain. I don't know why my docs won't listen to HER.... I am supposed to see another Neuro in Sept. My family doc had said not to get another doc to see me- but she isn't dealing w/ the pain I am. I am hoping to get some kind of answer from her. If she says it is TN I know they can do botox and other things.... I am supposed to see my endodontist next week- but I don't want another root canal... The one I did have has NEVER settled down!!!! never!!! It leaves me wondering if the first guy who did this one-- didn't kill all the root or what? It is an upper tooth-- and the tooth that is hurting is right beside it. I don't want him to do this tooth (it is a different endo)-- and wonder if the first root canal needed to be redone--- We don't have money to get 2 root canals-- fix one-- and do another... It all gets so complicated- and the x-rays show the teeth are fine- but I am still wondering if the first root canal was BOTCHED?? How do you know if you should get it done again? :( I just don't know what exactly to do--- ...... Could it POSSIBLY be trigger points like the neuro suggested-- maybe... but I can't get my massage therapist to call-- would like her take on this-- she does trigger point work..... living in a small town -- STINKS. My mom isn't one to read about things- never has read about bipolar stuff after alllll these years..... Maybe in the end of it all- this new neuro in Sept. will suggest surgery. xx Thank you- Beekeeper
No you don't heat it or freeze it. You simply use it on the effected (inflamed) area like a compress, although sometimes when I am having a real bad spell- I do lay on it and mold the rice around the area that is driving me nuts.
I think its the weight bearing down on it -vs- the pain of the air or nothingness. Do you know how sometimes you will find yourself holding your face and don't even know it? This helps with the feeling of "nothingness"
I contacted the Mayo clinic in Rochester, Mn. (5 hours away from me) when my tooth and jaw were hurting so bad and 4 dentist couldn't tell me what the problem was..I had to send in xrays of my teeth and jaw, letters from dentists, and meds I had tried.. Well I was accepted to the clinic but I was told I could only go to the pain clinic/psychologist center to be evaluated and participate in classes , etc..They pretty much said the pain was psychosymatic (spelling?) and they would teach me how to deal with and live with the pain..they refused to let me go to the dental clinic...So , like you, I have written off dentists and neurologists....But really, keep going ahead and don't give up...We are all here for you....
beekeeper said:
Thank you for the kind post. I had an ER doc in the beginning say it was TN- and my family doc believed this- until I saw the neuro--- then she changed her mind... I am on neurontin right now--- it kicks in my bipolar bad-- so I am having to take lithium too --- to offset the neurontin... I haven't been on lithium in YEARS--- but it is all I can figure out to off set this neurontin. I can't take elavil-- it makes mania even worse.... My docs are being --- rude essentially about working to make sure I am on the right dose of this or that... I had to e-mail my shrink like 6 times b/c I knew I needed an increase of lithium... I could tell it make him angry-- I am just tired of the doctors and the whole situation.... I am trying to find someone who does trigger point injections for TMD--- no luck yet. xx
lillyh said:
I agree with you about not being able to find a specialist in a small rural community..I live in a town like that..And my insurance isn't great and I have no money to pay my 20 % of the medical bills.But I have an awesome female family doctor. she gave me my first prescription for lyrica because she thought I had a neuralgia right away..She is better than the neurologist I saw by far!! I have atypical facial pain(atypical odontalgia) where the pain is just in my jaw and bottom tooth..I'm not on any other meds besides Amitriptyline..Can your family doctor prescribe the medication you need? My oral surgeon said nuerontin is the best for tooth pain caused by neuralgia..He told me if the amitriptyline the neurologist prescribed didn't work I could call him and he would prescribe me the nuerontin..Please don't be sad....You will find something that works for you...
I think I understand. Lately, I don't understand a thing-- LOL..... So, make a pillow with 5 pounds of rice and HOLD IT AGAINST MY HEAD--- right? and if it is REALLY BAD-- lay on it?
reneeC said:
No you don't heat it or freeze it. You simply use it on the effected (inflamed) area like a compress, although sometimes when I am having a real bad spell- I do lay on it and mold the rice around the area that is driving me nuts.
I think its the weight bearing down on it -vs- the pain of the air or nothingness. Do you know how sometimes you will find yourself holding your face and don't even know it? This helps with the feeling of "nothingness"