I really hope the next appointment at the neurologist helps you..If they find out how to help with your tooth pain that would be nice to know what they prescribe..Sometimes my whole mouth aches and has little pins and needles..Chronic pain is tireing and depressing..I don't want to get up in the morning because I am in no pain when I am sleeping and as soon as I wake up all I think about is my teeth and mouth..I never use to be like this.....I wish you the best at your appointment...
Stephanie(lilly)
beekeeper said:
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
Hi - So sorry to hear about doctors telling us what we "can't have" when we do suffer. My ATN affects 2 branches of the nerve. Originally diagnosed as TN and pain started after a dental procedure for receding gumline and felt like a had a tooth going bad (#12 upper left). All exams for that were negative...nothing wrong with the tooth. I went from dentist to oral surgeon, to endodontist, to ENT, back to family dentist who finally said he thought I had TN and should go see a neurologist. That took 2 years to get suggested! I spent another 3 years trying different meds unsuccessfully d/t side effects that interfered with my ability to work (I was a nurse anesthetist). In addition to tooth pain, I had burning on the roof of my mouth and electrical needle-feeling along upper lip and corner of my nose (maxillary branch). The pain was intermittent, but excruciating when it occurred & increasing in frequency over all this time. I finally decided to have surgery (went to UPMC Dr. Peter Janetta - now retired but he is the one who invented the MVD procedure - my nerve was compressed by 1 artery & 2 veins).I woke up after surgery pain-free. The pain came back almost 9 years later and this time the pain was also in my L eye (ophthalmic branch) and more constant. It feels like being repeatedly stabbed in the inner corner of my eye and there is a boring sensation behind my eye. I still get the tooth pain (even though I had the tooth pulled before I had the first MVD procedure) like a hot poker being stuck into the tooth root. I also have a burning, aching sensation on the roof of my mouth but no more upper lip, nose needle-like pain. I was then diagnosed as ATN and I had a repeat MVD - again woke up without TN pain. Much to my dismay, it came back again in about 9 months and it was changed in that it was constant now and also with intermittent 12/10 episodes. Then I had a stereotactic radiation procedure (information about this is listed under treatment options and rhizotomy) but it was unsuccessful. I have spent the last 6 years trying different meds and having to go on disability. I am interested to know the name of the compound cream that was prescribed for you. I have found nothing helpful and am willing to try anything that might help. You probably feel loopy from the ketamine in the compound (Ketamine is a powerful anesthetic drug that is a derivative of PCP). I hope this sharing help you to know that yes, it can affect more than one branch and can even affect both sides of the nerve (L & R) at the same time. Wishing you better days ahead.
I really hope the next appointment at the neurologist helps you..If they find out how to help with your tooth pain that would be nice to know what they prescribe..Sometimes my whole mouth aches and has little pins and needles..Chronic pain is tireing and depressing..I don't want to get up in the morning because I am in no pain when I am sleeping and as soon as I wake up all I think about is my teeth and mouth..I never use to be like this.....I wish you the best at your appointment...
Stephanie(lilly)
beekeeper said:
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
My advice is to find a neurologist that is well versed in TN. Usually you have to research bigger med center web sites, neuro departments and individual doctors. It's hard to find one who is caring and understands how debilitating it is to be in chronic pain when there is not a clearly visible cause. One should have an MRI done though to rule out TN causes like MS or tumor. Amitriptyline is another drug that can cause sleepiness. It is usually taken at bedtime for that reason. I was never even able to take a "therapeutic" dose because the next day I could not wake up enough to function. It's sad that there are so many of us are in the same boat...but at the same time, it is comforting to know we are not alone.
Hey Beekeeper and everyone, I find your information on this thread so interesting. I haven't been around for a bit, I have found other information that has led me down a different path. I would like to share just some things to research and read about. I don't mean to offend anyone, if you do not agree with any of it you should certainly not go in this direction but I feel the more information we can get the better and then we have to weed out the info for what pertains to us. I have been reading about problems with root canal infections, bone cavitations and mercury poisoning from amalgam fillings. I think that this has been my root cause all along. I am going to a biological dentist with a good reputation(good idea to research this) in June. I guess I will find out if this is the problem. I any of you read about this stuff and find any of it makes sense as to your own situation, please let me know so we can share information.
p.s. I still have no TN pain(pain along the trigeminal nerve line, branch 3) since doing mckenzie therapy exercises that pushed the bulging disc back into place in my neck taking pressure off the nerve. You can read about it on my page if you are interested.
I wish you luck and will pray for you all. I know together we can find the answers.
I have atypical/Type 2 TN (in all 3 branches on one side -- my neurologist didn't seem to think that the 3-branches thing was unusual, only that the "drilling/boring/dull" type pain I was describing was "the wrong kind of pain for TN," until I did research and discovered TN2.)
I am hoping you can find a more-educated neurologist -- possibly even print out some information to give to him/her, about the fact that TN2 can absolutely have the symptoms you're describing.
I'm going to mention the compounded cream to my doctor -- I've never heard of a topical ointment that helps (I take oral gabapentin, but I'm weaning off it because it's been ineffective), but I'm willing to try ANYTHING that helps, since I don't currently have effective pain relief.
I am taking my mom- -there is no other person to take in my life.... just frustrated and depressed about all of this...
Bellalarke said:
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?
Thank you. I will get the book..... I can have it rushed here before my appt. Take a copy to him as well. xx
Deej said:
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!!
Boy can I relate to being willing to try anything. I would like to know if the cream has a name, as I would like to talk to my Dr, about it. I have also been unable to find effective pain relief. Currently taking Oxycontin 40 mg.day..which helps with the intensity of the continual pain but does not help much with the horrible frequent and long-lasting bursts I get....but it's better than any thing else I have tried and the only side effect is mild constipation (and daily stool softeners/laxative tabs control that). I keep hearing from the Dr. that narcs are not effective for "nerve" pain. But from everything I have read over the years (and I have been dealing with this for almost 20 years now) they do help people with Type 2 TN. They don't seem to be as effective as in years past, before they had to change the formulations to prevent all the druggies from abusing them. The price we who are in real need must pay because of those idiots who just want to get "high" :( Really makes me angry when I think about it. But I digress. I agree that being armed with info to take with you to the Dr. is a good thing to do. Along with taking an advocate that can take notes for you while you talk with the Dr. Be aware that it can be taken as offensive to some Drs. though. One MD I saw wrote (most unprofessionally, methinks) in my chart the words " This patient clearly has an agenda", because I came armed with information that was not in agreement with his arrogant opinion....lol
Ashbet said:
I have atypical/Type 2 TN (in all 3 branches on one side -- my neurologist didn't seem to think that the 3-branches thing was unusual, only that the "drilling/boring/dull" type pain I was describing was "the wrong kind of pain for TN," until I did research and discovered TN2.)
I am hoping you can find a more-educated neurologist -- possibly even print out some information to give to him/her, about the fact that TN2 can absolutely have the symptoms you're describing.
I'm going to mention the compounded cream to my doctor -- I've never heard of a topical ointment that helps (I take oral gabapentin, but I'm weaning off it because it's been ineffective), but I'm willing to try ANYTHING that helps, since I don't currently have effective pain relief.
I keep bumping up the Neurontin/Gabapentin-- it is making me depressed--- it always does-- but at least if I see him on a high enough dose-- and if it helps-- he will know it's nerve pain. I don't know what else to try. ((hugs))
lillyh said:
I really hope the next appointment at the neurologist helps you..If they find out how to help with your tooth pain that would be nice to know what they prescribe..Sometimes my whole mouth aches and has little pins and needles..Chronic pain is tireing and depressing..I don't want to get up in the morning because I am in no pain when I am sleeping and as soon as I wake up all I think about is my teeth and mouth..I never use to be like this.....I wish you the best at your appointment...
Stephanie(lilly)
beekeeper said:
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
As I end up going to each different doctor--- .... I like them less......and less........ the way I am treated around here -- it's terrible. If a dog had been treated the way I had been--- It would be on the news! Seriously. You have BIPOLAR -- and it is like a HUGE CURSE. They don't think you can be sick w/ bipolar stuff...........
Just a general reply---- ..... I don't know how to deal w/ it. No it shouldn't be this way- but it is.
I think I posted what it is mine--- My family doc is all into getting stuff compounded---
It comes from a place in Georgia- I thought it was Alabama-. Mine was - I think 35 dollars? You get A LOT though.... the instructions are not not clear though-- when you get it... You could easily OD on the stuff... seriously...... It knocks me out most everytime I use it.......
Their address is
Dermatran Health Solutions, LLC.
PO Box 108
Rome, GA 30162
Phone- 855 675 5200
I asked my doc to have them leave out the lidocaine- I cannot do "caine" drugs- except carbocaine-- and didn't even want to risk it.
Ketamine
Baclofen
Cyclobenzaprine
Gabapentin
Orphenadrine
They could leave the Gabapentin out of yours and add lidocaine....... I think you can pretty much get it however you want it- ........... The pharmacist there was very nice about explaining HOW to USE IT EXACTLY.
This is important.
My family doc didn't tell me.
Hope this helps.
beekeeper.
Ashbet said:
I have atypical/Type 2 TN (in all 3 branches on one side -- my neurologist didn't seem to think that the 3-branches thing was unusual, only that the "drilling/boring/dull" type pain I was describing was "the wrong kind of pain for TN," until I did research and discovered TN2.)
I am hoping you can find a more-educated neurologist -- possibly even print out some information to give to him/her, about the fact that TN2 can absolutely have the symptoms you're describing.
I'm going to mention the compounded cream to my doctor -- I've never heard of a topical ointment that helps (I take oral gabapentin, but I'm weaning off it because it's been ineffective), but I'm willing to try ANYTHING that helps, since I don't currently have effective pain relief.
Please keep me posted. I don't have any mercury fillings-- . I have had two root canals-- one about 4- years ago- and a gum graft..... That's it. Last root canal -- no problems...... I just wish I have never heard of osteomylitis nor jaw necrosis... good grief. Doc Holliday was a dentist-- what did he do for people? There were no such things as root canals then-- I guess EVERYONE-- had bad smiles.....but they lived.......sigh.
Shawnamohana said:
Hey Beekeeper and everyone, I find your information on this thread so interesting. I haven't been around for a bit, I have found other information that has led me down a different path. I would like to share just some things to research and read about. I don't mean to offend anyone, if you do not agree with any of it you should certainly not go in this direction but I feel the more information we can get the better and then we have to weed out the info for what pertains to us. I have been reading about problems with root canal infections, bone cavitations and mercury poisoning from amalgam fillings. I think that this has been my root cause all along. I am going to a biological dentist with a good reputation(good idea to research this) in June. I guess I will find out if this is the problem. I any of you read about this stuff and find any of it makes sense as to your own situation, please let me know so we can share information.
p.s. I still have no TN pain(pain along the trigeminal nerve line, branch 3) since doing mckenzie therapy exercises that pushed the bulging disc back into place in my neck taking pressure off the nerve. You can read about it on my page if you are interested.
I wish you luck and will pray for you all. I know together we can find the answers.
I cannot go to large centers. It's just not possible... I get angry thinking we have to educate doctors buy purchasing books and taking in print outs--- Even then-- what happens?? They get offended b/c you have information that maybe he/she doesn't know--- Then that doctor often- doesn't want to see you again if you 'have all the answers."
Not Again said:
My advice is to find a neurologist that is well versed in TN. Usually you have to research bigger med center web sites, neuro departments and individual doctors. It's hard to find one who is caring and understands how debilitating it is to be in chronic pain when there is not a clearly visible cause. One should have an MRI done though to rule out TN causes like MS or tumor. Amitriptyline is another drug that can cause sleepiness. It is usually taken at bedtime for that reason. I was never even able to take a "therapeutic" dose because the next day I could not wake up enough to function. It's sad that there are so many of us are in the same boat...but at the same time, it is comforting to know we are not alone.
Dear Beekeeper - So sorry to learn that you have limited access. I may be in that same situation now that I am on Medicare. Time will tell for me, since I am going to try to get another MRI. Is there a TN support group in your area? Or perhaps you can find better referral information on this website or on the Facial Pain Assn (Formerly TNA) website. Wishing you the best and that I could be of more assistance.
beekeeper said:
I cannot go to large centers. It's just not possible... I get angry thinking we have to educate doctors buy purchasing books and taking in print outs--- Even then-- what happens?? They get offended b/c you have information that maybe he/she doesn't know--- Then that doctor often- doesn't want to see you again if you 'have all the answers."
Not Again said:
My advice is to find a neurologist that is well versed in TN. Usually you have to research bigger med center web sites, neuro departments and individual doctors. It's hard to find one who is caring and understands how debilitating it is to be in chronic pain when there is not a clearly visible cause. One should have an MRI done though to rule out TN causes like MS or tumor. Amitriptyline is another drug that can cause sleepiness. It is usually taken at bedtime for that reason. I was never even able to take a "therapeutic" dose because the next day I could not wake up enough to function. It's sad that there are so many of us are in the same boat...but at the same time, it is comforting to know we are not alone.
I take my amitriptyline at 8 pm every night...It still makes me tired until about 9 am the next morning :( It is nice to know we are pretty much in the same boat and not alone...! I have used up all my dental insurance so I can't see another until January..I have limited funds since my job ended so I can't see another neurologist. It is nice to be able to read other people's post and maybe get some pointers and solutions to my pain and problems..
I'm lidocaine-insensitive, but Carbocaine and Marcaine work on me. FWIW, lidocaine insensitivity does occur in the general population, but it's more common (as is TN) among people with a connective-tissue disorder called Ehlers-Danlos Syndrome.
(Not trying to give you anything extra to worry about, but if you have other EDS symptoms, it might be worth investigating the possibility. Doesn't sound like you'd have much luck getting to see a geneticist in your situation anyway, so it's just something to keep in mind to investigate online if you can. I don't run into a lot of non-EDS lidocaine-insensitive people, but I talk to a lot of EDS people, so my sample is a little skewed!)
I have been doing some research on the Facial Pain Association (formerly TNA) website and there is a lot of new information since I last looked about 5 years ago. There are a lot of links with helpful information on ways to find help. I think it's worth checking out. http://www.fpa-support.org/about-tna/?gclid=CKqrvfq8urcCFbGDQgodcxIAvg
lillyh said:
I take my amitriptyline at 8 pm every night...It still makes me tired until about 9 am the next morning :( It is nice to know we are pretty much in the same boat and not alone...! I have used up all my dental insurance so I can't see another until January..I have limited funds since my job ended so I can't see another neurologist. It is nice to be able to read other people's post and maybe get some pointers and solutions to my pain and problems..
It is just part of living in tiny rural town.... our situation is one where going out of town and staying 3-4 days- or longer- it isn't possible... I surely wish it were.
Not Again said:
Dear Beekeeper - So sorry to learn that you have limited access. I may be in that same situation now that I am on Medicare. Time will tell for me, since I am going to try to get another MRI. Is there a TN support group in your area? Or perhaps you can find better referral information on this website or on the Facial Pain Assn (Formerly TNA) website. Wishing you the best and that I could be of more assistance.
beekeeper said:
I cannot go to large centers. It's just not possible... I get angry thinking we have to educate doctors buy purchasing books and taking in print outs--- Even then-- what happens?? They get offended b/c you have information that maybe he/she doesn't know--- Then that doctor often- doesn't want to see you again if you 'have all the answers."
Not Again said:
My advice is to find a neurologist that is well versed in TN. Usually you have to research bigger med center web sites, neuro departments and individual doctors. It's hard to find one who is caring and understands how debilitating it is to be in chronic pain when there is not a clearly visible cause. One should have an MRI done though to rule out TN causes like MS or tumor. Amitriptyline is another drug that can cause sleepiness. It is usually taken at bedtime for that reason. I was never even able to take a "therapeutic" dose because the next day I could not wake up enough to function. It's sad that there are so many of us are in the same boat...but at the same time, it is comforting to know we are not alone.
You might want to try neurontin. It doesn't seem to make me as doped up-- I just have to be careful b/c it makes my depression worse. I don't even dental insurance. My funds are quite limited, however. I dont know if the doctor who is giving you the amitriptyline would give you the neurontin. Right now I am up to 900 a day... trying to get it a bit higher before I see the neuro on the 3rd..... I am dreading this appt. w/ such a passion. He didn't ever order an MRI and I just hope he will this time....... ((hugs))....... There is an ointment that helps me some- I posted about it some where on this thread.... xx Beekeeper