Good luck with your mvd! I hope it gives you the relief that you need!!
:( I am sorry to hear that Shindig... I was wonderin how you've been hadn't heard from you in awhile. THAT sucks...
shindig said:
Neurontin for me had the shortest effective span. I had to keep upping it and it would relieve pain while it was making me tired for about a week, then would quickly fade in effectiveness over the following month until I was in the same pain as before taking it.
My pain is constant though, and runs from the back of the throat forward to the eye which hurts to move, and across the cheek and rear of the sinus. It feels a lot like strep throat/razors/toothpicks/ice picks jabbing everything, along with numb and tingly areas in several places on the left side of the head.
After maxing out my tricyclics and not getting relief the neurologist referred me to a surgeon for an MVD which I'm going to have soon and hope it helps. I don't know what I'll do if it doesn't help, the meds don't work well enough.
i do! I have the exact feeling of having something stuck in between my teeth it comes and goes and it happens in different teeth for me now since I went ahead and did root canals and teeth pulling thinking it was my teeth my pain started off with just the teeth and headaches then after more dental it got worse sounds like you got a good dentist!! i was unfortunate ..my advice don't do a root canal your pain will get worse! I dont get electric shooting pain either! try a tricylic anti depressent its better for type 2 pain !! i also tried gaba it did not work for me!! Im begging you to not do dental work!! I had burning in my teeth too I don't now cause im on nortriptyline but my teeth still ache. They are telling you don't have tn because you dont' have shocking pain You have atypical TN doctors don't know anything about this go to groups at the top of the page and look for type 2 trigeminal neuralgia. Its a very hard thing to except and when doct. tell you that you don't have it you want to believe them because you don't want this disease It will take time to except if you have more questions I am here for you friend me and inbox me I would be more then happy to talk. keep us posted
I have type 2tn . I take baclofen topamax and gapapentin and pain medicine when i have breakthrough pain. i belive i I got mine from some bad dental work , just keep on your doctor about the different choices of medicines that our out there . if i have to try every one to find one that that really works for me i will. my story is a lot like yours i was flossing a lot in between two teethe then finally they dentist removed the tooth that was driving me crazy then the tooth next to it was bothering me and honestly i believe the dentist was was right out of dental school he just did a root canal to shut me up he really messed it bad, i may have already have had the beginnings of atn or not but after the root canal its been downhill. needless to say I switched dentists.
Dear Gizmo,
My story is very similar. Constant jaw and tooth pain, treated for Trigemenal neurolgia, MRI, xrays showed nothing.
7 months later an xray revealed my jawbone had receced away from the molar. It was pulled and I am now diagnosed with Osteomyelitis (bone infection)!!! I am on 8 wks of IV antibiotics after having the dead bone debrided.
This may not be your diagnosis but my point is...you know your own body more than anyone. DO NOT let the medical world tell you nothing is wrong. You have to be your own advocate.
Good luck to you. My thoughts are with you!
Yvonne
I don’t have electrical shooting pain either but my teeth do hurt. I went to my dentist because of the tooth pain. He is a very good dentist, very detailed. He did an exam with X-rays. He said it wasn’t my teeth but maybe a nerve in my ear (my pain starts behind my left ear). I went to an ENT (also very good, I work in surgery so I know lots of docs. Lol) he did an MRI and a CT scan. He said it was TN. And referred me to a neurologist. I couldn’t get an appt with that doc for 6 months so my internist set me up with another neurologist (didn’t like him, I think he was a quack) so I finally got into the first neurologist. He looked at my scans and agreed with the ENT. I told him I didn’t have the shocks and he said there are different types of TN. He also said he has had patients come in after having teeth pulled who still have “tooth pain”. My headaches are different. Sometimes behind my ear and sometimes my cheek and sometimes my teeth. As you probably know the TN has three branches so if any (or all) of the branches are affected your pain can be different. Also, flossing could be a “trigger” for pain. One of my triggers is cold air. I would go to another neurologist and ask for a KIS (not sure of spelling). Good luck!
The dentist at the oral/facial pain center says I definitely do not have TN. They did some electrical testing (like they do for carpal tunnel) and it came back damage to the third nerve and it is nueropathic pain. I just went to him yesterday and he did a laser treatment which he said sometimes help the nerve pain. He said they sometimes do it for TN but I haven't seen anyone talk about this treatment. I thought it helped the day he did it but I have the pain today which I made worse because I tried to get dome food out that was stuck. I used a dental brush instead of flossing but I have the same pain as if I flossed. Do you have any suggestions as to what to do when you have food stuck and don't want to floss? I started taking Tramadol today and thought it might have helped but when I used the dental brush it hurt me and I can't tell if the Tramadol is helping. I will see what happens tomorrow and if it doesn't help I will stop it. I need to find a nuerologist in my area but since I had a bad experience with the first one (he just told me to go to a pain doctor) I really don't know how to find a good one. I know one I used for other problems but he is impossible to get an appointment with. Can you tell me what is KIS? Thank you for responding to my post.
Gizmo
mia luna said:
I have type 2tn . I take baclofen topamax and gapapentin and pain medicine when i have breakthrough pain. i belive i I got mine from some bad dental work , just keep on your doctor about the different choices of medicines that our out there . if i have to try every one to find one that that really works for me i will. my story is a lot like yours i was flossing a lot in between two teethe then finally they dentist removed the tooth that was driving me crazy then the tooth next to it was bothering me and honestly i believe the dentist was was right out of dental school he just did a root canal to shut me up he really messed it bad, i may have already have had the beginnings of atn or not but after the root canal its been downhill. needless to say I switched dentists.
Dear Yvonne, I had a CT scan of my mouth so I know I don't have an infection. I keep thinking I might need a root canal but the endodontist checked 3 times and said I don't need one. The dentist said it is nueropathic pain,not TN but it is treated with gabapentin , like for TN. Since I still have pain I need other medication and I just started Tramadol. I don't know if the other meds they use for TN are used for nueropathic pain. If the Tramadol doesn't work I will be seeing the nuerologistthat is at the oral/facial pain clinic I go to and see what he recommends.
I hope your antibiotics help you.
Gizmo
Yvonne said:
Dear Gizmo,
My story is very similar. Constant jaw and tooth pain, treated for Trigemenal neurolgia, MRI, xrays showed nothing.
7 months later an xray revealed my jawbone had receced away from the molar. It was pulled and I am now diagnosed with Osteomyelitis (bone infection)!!! I am on 8 wks of IV antibiotics after having the dead bone debrided.
This may not be your diagnosis but my point is...you know your own body more than anyone. DO NOT let the medical world tell you nothing is wrong. You have to be your own advocate.
Good luck to you. My thoughts are with you!
Yvonne
Yes I have a very similar story as yours gizmo, the Neurologist I went to was terrible (told me it was stress).
The pain also stated after bad Dental work on one tooth over 5 years ago, and the tooth is no longer there now.
I've had several teeth extractions only to find I still have the pain, the pain seems to move along to another tooth. The pain can be on either side but since the extractions the pain is alot less. I can feel slight pain sensation where the large rear molars where, but the pain is less at the rear of my mouth and side of face and head and I think this is because the teeth are no longer there........ lol
After reading your story and also Cleo, I am amazed to hear the words Nueropathic Pain, Dysesthesian, Hydereastheasia of the Lingual Nerve and Anesthesia Dolorosa................ as it seems so very true to my symptoms. I'm not sure if I suffer from ATN or tooth Hypersensitivity which sets of the Neuralgic pain.
I get the long constant ache, sharp aching pins and needles pain, feels like my tooth is constantly sharp, the pain is located on all 3 points of my Trigeminal nerve (front forehead, around eye, top and bottom row of teeth). The pain started on the left side and moved over to the right after about 1 year, since then the pain does move sides (its currently back on the left side).
This past week I have had pain on both sides at the same time, never has this happen before. I can feel the pain move around my face, its really locked in on the left side but I can also feel shooting moving pain on the right, its quite quick and I can feel it moving and it does fade quite quickly (but the pain stays constant on the right side).
My pain seems to start in the mornings, also eating sweet or cold foods sometimes can trigger it off. I can eat the same foods somedays and there is no pain, but then I can eat the nextday and the pain starts soon after. I was adamant its my teeth, that something is wrong with them, I've had x-rays which has showed nothing is wrong......but still it feels like tooth sensitivity.
I would luv to have all my teeth out, I cant see them hurting if they are not there.............
You are certainly not on your own, I just hope all of us here can be healed one day from this awful pain.
,
My pain started a few months after I had a crown put on but was not bad pain. It continually got worse and I was constantly flossing because food got stuck. I kept complaining to my dentist and he said there was nothing to do because it was the shape of my mouth that caused the space. After months of complaining he did a crown next to the other crown and made it tight so food would not get stuck. After he did it it hurt even more. Went to an endodontist 3 times and he said I didn't test postive for a root canal. I thought I was having relief from the gabapentin because I was having some pain free day and about 2 weeks ago had 3 pain free days. After that I have had pain every day and I don't know why. Tried Tramadol and it didn't help and didn't feel well from it. I increased my nuerontin a little today. Hope that helps. The dentist at the oral/facial pain clinic recommended I get an opinion from his endodontist, which I will do next week . I never thought I would pray I needed a root canal but I am also scared that if I do one it will cause me more pain. The dentist said nueropathicpain will not get worse from a root canal. I guess I will see what his endodontist says and go from there. I do not get pain like you do in my face or head, only bad burning and sometimes pressure in my tooth, but it sometimes travels to my upper tooth, directly above the bottom one that burns, and also sometimes travels to my upper and lower front teeth and gums.
Are you on ant medication now? What does your doctor say about TN or nueropathicpain? Hope you find relief.
Gizmo
Wes said:
Yes I have a very similar story as yours gizmo, the Neurologist I went to was terrible (told me it was stress).
The pain also stated after bad Dental work on one tooth over 5 years ago, and the tooth is no longer there now.
I've had several teeth extractions only to find I still have the pain, the pain seems to move along to another tooth. The pain can be on either side but since the extractions the pain is alot less. I can feel slight pain sensation where the large rear molars where, but the pain is less at the rear of my mouth and side of face and head and I think this is because the teeth are no longer there........ lol
After reading your story and also Cleo, I am amazed to hear the words Nueropathic Pain, Dysesthesian, Hydereastheasia of the Lingual Nerve and Anesthesia Dolorosa................ as it seems so very true to my symptoms. I'm not sure if I suffer from ATN or tooth Hypersensitivity which sets of the Neuralgic pain.
I get the long constant ache, sharp aching pins and needles pain, feels like my tooth is constantly sharp, the pain is located on all 3 points of my Trigeminal nerve (front forehead, around eye, top and bottom row of teeth). The pain started on the left side and moved over to the right after about 1 year, since then the pain does move sides (its currently back on the left side).
This past week I have had pain on both sides at the same time, never has this happen before. I can feel the pain move around my face, its really locked in on the left side but I can also feel shooting moving pain on the right, its quite quick and I can feel it moving and it does fade quite quickly (but the pain stays constant on the right side).
My pain seems to start in the mornings, also eating sweet or cold foods sometimes can trigger it off. I can eat the same foods somedays and there is no pain, but then I can eat the nextday and the pain starts soon after. I was adamant its my teeth, that something is wrong with them, I've had x-rays which has showed nothing is wrong......but still it feels like tooth sensitivity.
I would luv to have all my teeth out, I cant see them hurting if they are not there.............
You are certainly not on your own, I just hope all of us here can be healed one day from this awful pain.
,
Update...As I mentioned before my burning mouth pain is controlled with Effexor. Well recently I was in a car accident and was given Meloxicam an anti inflammitory for lower back pain. WELL I noticed the additional pain in my problem area and when I floss I don't have that pain anymore either!!!! Plus I didn't have any bleeding when I flossed there either!!! Just thought I would mention it. I am very happy about it and I am going to ask ny neurologist if I can keep taking it long term for the residual pain I was having... :) Min
Wes, wrote you a long reply but it disappeared from my computer. I will make it shorter this time. Our pain is similar in some ways but also not similar in other ways. I get bad burning in my bottom right tooth which sometimes goes to the upper one and also to my upper and lower front teeth and gums. I do not get any pain in my face or head. I also think it started from dental work but I also think my constant flossing in the area could have brought it on. I went to an endeodontist 3 times and he said I do not need a root canal. The dentist at the oral/facial cllinic I went to is treating me for nueropathic pain but I keep asking if it is possible I might need a root canal because my brother had similar pain and and was told he didn't need root canal, but did it anyway. He only gets pain now if he touches he tooth, which is a big improvement over the pain I get now. The dentist advised me to get an opinion from his endodontist which I will do next week. I never thought I would pray that I would need a root canal and I am also afraid that if I do need one it will make the nueropathic pain worse. The dentist said it would not. I guess will see what the endodontist says and go from there.
Are you are taking any medications? I am on gabapentin hich I thought was helping because I was having some pain free days, but for the past 10 days it has been there every day. I just increased my doese a little today and hope it helps.
Hope you find sone relief.
Gizmo
Wes said:
Yes I have a very similar story as yours gizmo, the Neurologist I went to was terrible (told me it was stress).
The pain also stated after bad Dental work on one tooth over 5 years ago, and the tooth is no longer there now.
I've had several teeth extractions only to find I still have the pain, the pain seems to move along to another tooth. The pain can be on either side but since the extractions the pain is alot less. I can feel slight pain sensation where the large rear molars where, but the pain is less at the rear of my mouth and side of face and head and I think this is because the teeth are no longer there........ lol
After reading your story and also Cleo, I am amazed to hear the words Nueropathic Pain, Dysesthesian, Hydereastheasia of the Lingual Nerve and Anesthesia Dolorosa................ as it seems so very true to my symptoms. I'm not sure if I suffer from ATN or tooth Hypersensitivity which sets of the Neuralgic pain.
I get the long constant ache, sharp aching pins and needles pain, feels like my tooth is constantly sharp, the pain is located on all 3 points of my Trigeminal nerve (front forehead, around eye, top and bottom row of teeth). The pain started on the left side and moved over to the right after about 1 year, since then the pain does move sides (its currently back on the left side).
This past week I have had pain on both sides at the same time, never has this happen before. I can feel the pain move around my face, its really locked in on the left side but I can also feel shooting moving pain on the right, its quite quick and I can feel it moving and it does fade quite quickly (but the pain stays constant on the right side).
My pain seems to start in the mornings, also eating sweet or cold foods sometimes can trigger it off. I can eat the same foods somedays and there is no pain, but then I can eat the nextday and the pain starts soon after. I was adamant its my teeth, that something is wrong with them, I've had x-rays which has showed nothing is wrong......but still it feels like tooth sensitivity.
I would luv to have all my teeth out, I cant see them hurting if they are not there.............
You are certainly not on your own, I just hope all of us here can be healed one day from this awful pain.
,
Hi Cleo, the thermography was separate from the electrical testing. They put electrodes around the bottom of my mouth and tested my reaction to it, which felt like little shocks. I was told by one of the dentists or oral surgeons not to use a water pic because it was not good because I have an implant next to the tooth that burns and it will cause damage to the tissue around the implant. Today I tried a thin brush and it bled and my pain got worse. I also tried a syringe filled with water and thought it might help to clean the tooth but it didn't have enough pressure. It is so frustrating because when food gets stuck I need to get it out but when I try to it causes more pain.
Do you know anything about KIS that DeeDee said to ask for? I also could use some help with this website. How do you make somebody your friend and when you do that can you write them directly?
Thanks for your help.
Gizmo
Cleo said:
gizmo,
Was the thermography the electrical testing you mention? how was it done? Yes the meds for TN are the same used for all nerve pain. You can use a waterpic in place of flossing.
I don't know how to a lot on the network. How do I do a pm inbox?
Cleo said:
I have no idea what KIS is. bleeding is not normal and I can understand not using high pressure for a short time(3 months max) but after its healed it should be no problem. burning is not a normal sign of a dying tooth.
I just clicked on your name and added you as a friend and if you accept then we can use pm inbox.
...
gizmo said:Hi Cleo, the thermography was separate from the electrical testing. They put electrodes around the bottom of my mouth and tested my reaction to it, which felt like little shocks. I was told by one of the dentists or oral surgeons not to use a water pic because it was not good because I have an implant next to the tooth that burns and it will cause damage to the tissue around the implant. Today I tried a thin brush and it bled and my pain got worse. I also tried a syringe filled with water and thought it might help to clean the tooth but it didn't have enough pressure. It is so frustrating because when food gets stuck I need to get it out but when I try to it causes more pain.
Do you know anything about KIS that DeeDee said to ask for? I also could use some help with this website. How do you make somebody your friend and when you do that can you write them directly?
Thanks for your help.
Gizmo
Cleo said:gizmo,
Was the thermography the electrical testing you mention? how was it done? Yes the meds for TN are the same used for all nerve pain. You can use a waterpic in place of flossing.
I had an electromyography. They put the electrodes around my mouth and I got little shocks. It seems llike it is very similar to the one they are talking about but it is used in the mouth area, not the spine or legs. I am in so much pain now, that is why I didn't respond to your earlier message because I need more time to concentrate on the info you sent. I am going to the oral/facial pain clinic tomorrow and am seeing their endodontist to check for a root canal. Will let you know what happens.
Gizmo
Cleo said:
gizmo, is this the nerve testing you had done?
http://www.orthonc.com/education-research/diagnostic-tests/nerve-te...
hi, sorry to hear about the pain. mine is sort of like that, i find it is using the face muscle to pull the lip up that starts it off for me. brushing your teeth you are moving the lip away from the teeth, and dont realize your doing it with that muscle
eating, i try not to close the jaw all the way as that makes me tighten up the cheek, if im describing that right. i find that trying to relax the face when it strikes make it go away sooner.
I think it is important to remember that while this site is a wealth of information and can introduce you to many thoughts and options you may not have come across before, none of are physicians and you review the specifics of your case with a neurologist that you trust and develop a treatment plan that is individualized to you. That treatment plan may vary well include some of the more common procedures such as gamma knife, mvd, rhizotomy, etc. that is not for anyone on this sure to judge but yourself.