What I was referring to in that was the pain. I have ATN and to me I have days where it's non stop pain. I've had the shocks,, but mine is usually just constant pain. it's worse when there are pressure changes in the weather. I have a friend with FM and she hurts all the time..
teacher said:
My reply to the person that says Trigeminal Neuralgia is like Fibromyalgia in the face. I say it is like being electrocuted in the face. Does Fibromyalgia feel like you are being electrocuted in the areas you have it?
I'd think that gluten allergy can, in some cases, be related to TN since it can cause nerve damage if untreated for some time. I saw a video today in which a doctor was explaining that in Europe only about 10% of all people who have a gluten problem know about it and treat it properly. Those are usually the ones whose symptoms are very bad (incl. peripheral neuropathy, brain fog, depression, serious skin issues...the list goes on) that they end up in an ER or are going from one doctor to another until someone enlightened does the gluten test... Yep, it's not just TN which often goes misdiagnosed, I'm aftraid.
teacher said:
Hello:
I have a gluten problem too, and also Trigeminal Neuralgia. I also came down with TN about 5 months, after I healed from Drug induced Lupus. It was wierd, and very rare, and only suspected that Osteo-Biflex caused me to have it. I haven't had LUPUS since, but boy did it leave a bad disease in me afterwards (TN)
I don't know if having a gluten allergy or problem is related to TN or not. But having a gluten problem is related to having auto-immune diseases, that is for sure. I have a number of them that are controlled if I stay away from gluten.
Hey sweetie,
I’m sorry you’ve had a whirl wind of issues and problems since your MVD. I must have missed that some how. I agree with Red and want to add some info for you on the fibro and lupus deal. Fibromyalgia does not really have a test for it you just need to have pain in even just one of the trigger spots, and usually you’ve had all over pain for 6 months. There is no real good reason why people develop and get fibro, but some think it could be triggered by surgery or trama (to having TN is trama),and there is a list a mile long on other possible reasons. Lupus can be extremely hard to figure and be diagnosised with often it is misdiagnosed. Some people will come up with a positive Ana test and not have lupus and others my test negative for Ana but have lupus. In my family I only have two relative whom has a positive Ana and has lupus while the other 5 all test negative for it but have lupus or another autoimmune disease. So please keep this info in mind if you continue having issues. All of these family member have had these issues for years some even decades before they got the correct diagnosis. My dad was told he just had heart disease and diabetes when he actualy had systematic lupus. Another relative was just told they were allergic to wheat and everything else under the sun before getting the correct diagnosis for systematic lupus it took 8 year before they got the correct diagnosis. Autoimmune disorders are tricky and can be very hard to diagnosis. So if you keep having these types of issues don’t just write them off just yet. There is still the possibility you could have one of these. Though I hope your just having bad string of luck and in the next two months you’ll be as healthy as the peach that you are:)
crashgirl said:
Red, thanks for the suggestion, I did have both tests as well as a ton of others and all came back negative, they even tested for lyme and Malaria ( no idea there) I do think the eye pain may be a new wrinkle with the TN, but being I just had an MVD I am not really ready to accept that yet, plus there is so much more going on.
Although Percura is listed in the Federal Register for procurement by US Federal agencies, it is unclear to me that the drug is "FDA-approved" for anything more than safety. If anyone is aware of a published study of its efficacy in neuralgia patients, I'd like to see a link, please.
The product is specifically targeted as a dietary supplement to provide complex amino acids that tend to be leached out of the body system by neuropathic pain. Its primary applications are with secondary inflammatory effects of diseases like Diabetes. While inflammatory effects can be associated with some cases of TN, the disorder is not regarded as an inflammatory disease. There are no abstracts mentioning the term Percura in the database of the US National Library of Medicine. NONE. Thus the application of this dietary supplement to Trigeminal Neuralgia must be regarded as unproven.
I am new to the TN network and hope I am correctly using this site. I have not been told I have TN but after doing my own research I think I have ATN or type 2(I don't know if they are the same thing).
After having a crown on my tooth I started having food stuck all the time and was constantly flossing the area. It became very painful and my dentist sent me to an endodontists and he said I did not need a root canal. An oral surgeon did a cat scan of my mouth and said I had bone loss under an implant that was done 4 years ago and a food pocket next to it and I should see a periodontist to correct it. My dentistand the periodontist in his office did not agree. The periodontist aid I had a crack in the tooth above my crown that needed a root canal and the tooth below which has been causing a severe burning pain every day for many months should also have a root canal, which the endodontist did not agree with. I saw a nuerologist and had an MRI and MRA.of the brain and they were negative. I started gabapentin(300mg once a day and am supposed to builld up to 900 mg over a 3 week period. On the 6th day I took it on an empty stomach at 7PM at night and after eating an hour later I go very tired and then dizzy and nauseous. I felt like that all night and it is 1PM the next day and I am still nauseous. I don't know if I am like this because I took the gabapentin on an empty stomach or because after 6 days of being on it am aving a reaction to it. i can't imagine it would be in my system since 7PM the night before. My delema is whether or not to continue on the medication or stop it because I really want to give it a chance. The pharmacist said maybe I should have start on a smaller dose. I am waiting 3 hrs and have not received a return call from my doctor who will probably tell me to stop it and go to a pain management doctor as he said that after I told him I had a sedated feeling the first morning after I had taken my first dose the night before. Needless to say I will not be going back to him. Has anyone had this experience with gabapentin and the 300mg dose? Any advice would be appreciated.
I also would like to know how I can definitely know if it is ATN or is it just trial and error with medications? i do have a problem with meds and nausea but thought that I was OK after 5 days of no problem. I am hoping it was because of taking it on an empty stomach but the nausea is now lasting for 17 hours which seems odd.
I have the severe burning in my tooth ebery day. It starts at different times and usually starts mild and steadily increases until it becones unbearable. I have also started getting severe burning in my front upper and lower teeth, gums and palatte. I justspoke to another nuerologist a friend recommended I call and he said it does not sound like TN and said I should go to a facial pain clinic that he knew that was excellent atdiagnosing unusual facial pain. I think that is what I will do. Does anyone have any thoughts on this. Somebody please respond and let me know if my message is getting through. I fee so helpless.
Gizmo
Hi and welcome to the tn support site. The drugs for TN can cause a lot of side affects such as dizziness, mental fog (or zombie brain), and what not. It dose take awhile for these medications to build up in your system and should be done slowly. You will probably get better replies for this if you start a need discussion for this (copy this last post above) and return to main area for discussions up towards the top there is button called new click on that and past your post in that. Right now I can’t think clearly, but I can say there are a lot of member her who have dental procedures cause their TN. If you need I can most certainly start a new discussion for you. Sorry I’m not much help more than that right now but I just took my medication a little bit ago that sent me to the moon it seems today. Again welcome to the site and it is so nice to meet you.
ATN and Type 2 TN are the same thing (see our TN Fact Sheet on the main page)
Gabapentin can have side effects of dizzyness or nausea for some patients. For many, the effects wear off as one becomes acclimated. My advice as the husband of a patient who has used 2700 mg/day of Gabapentin for the past 14 years, would be to stick with the med, and ask your doctor about ramping up the dose a bit more slowly. Some people are hyper sensitive to all of the anti-seizure meds, and it would be wise to be sure you aren't one of them. Taking this med on an empty stomach is also not recommended.
Be aware that many cases of trigeminal face pain start out with pain perceived as coming from a single tooth. If pain shifts between teeth (particularly following root canal or extraction), it sometimes gets called "atypical odontalgia", not that the label means much ("Unusual tooth pain" it is, but from what source is anybody's guess).
If you've had two different opinions on the source of your pain, then take your dental and medical records to a better qualified dentist, maxillo-facial surgeon or orthodontic surgeon for a third opinion. If your tooth pain subsides at night, then I'd say you have an indication that the pain is NOT dental in origin. But you need confirmation and advice from a medical professional.
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst, LwTN
Note: I am not a medical doctor. My background is summarized at the beginning of our article cluster in the Face Pain Info tab of our menus.
Red is right. Often when my pain starts it's in one particular tooth, but since that tooth has no root and is not infected it's not tooth pain. Then it can "travel" along my gum line and up my jaw. Other times the pain starts in my cheek or temple and I get zings in that tooth. Right now it's being controlled by a mix of klonopin, nortriptyline, and topical lidocaine. When I was first diagnosed my neurologist put me on trileptal and the pain was gone. I had to switch meds because of constant vomiting on Trileptal. Now I have little tooth pain. All those years thinking was my teeth and all the work....
I have an autoimmune problem which causes inflammation of the arteries of the head and my Neuro thinks its connected with the TN, he explained to me that there are many causes of TN and it is not always due to a compression.
I have an autoimmune problem which causes inflammation of the arteries of the head and my Neuro thinks its connected with the TN, he explained to me that there are many causes of TN and it is not always due to a compression.
Vascular compression appears to be a prominent cause, Elstep, but as you say not the only one. We know that TN also emerges in a good many patients after whiplash injury. It can be a result of dental work, root canals with over-filled cavities leaking chemically active pulp replacement material into the tissues of the jaw, dental surgery, anesthetic administered directly into the mandibular branch of the nerve, etc. A number of cases also present as "idiopathic" -- cause unknown.
Thank you Kari. My doctor just called and said to stop the gabapentin and go to a pain doctor. I asked him to give me a lower dose but he said my dose was ot high (300mg once a day) and that I would need at least 900 mg to feel relief. Meanwhgil I had no pain on Thursday which was like a miracle for me, bad pain Friday and not too bad Saturday. So
far today I just started with a little discomfort which is othing unlesds it gets worse later. I would say that'san improvement. I might just wasit for my nusea to go away and try the dosage myself, and then find a different doctor.
Thanks for the info on starting a new discussion. I will try it but if it doesn't work I will take you up on your offer to do it for me. Hope you are feeling better now. Gizmo
Kari said:
Gizmo Hi and welcome to the tn support site. The drugs for TN can cause a lot of side affects such as dizziness, mental fog (or zombie brain), and what not. It dose take awhile for these medications to build up in your system and should be done slowly. You will probably get better replies for this if you start a need discussion for this (copy this last post above) and return to main area for discussions up towards the top there is button called new click on that and past your post in that. Right now I can't think clearly, but I can say there are a lot of member her who have dental procedures cause their TN. If you need I can most certainly start a new discussion for you. Sorry I'm not much help more than that right now but I just took my medication a little bit ago that sent me to the moon it seems today. Again welcome to the site and it is so nice to meet you.
ATN and Type 2 TN are the same thing (see our TN Fact Sheet on the main page)
Gabapentin can have side effects of dizzyness or nausea for some patients. For many, the effects wear off as one becomes acclimated. My advice as the husband of a patient who has used 2700 mg/day of Gabapentin for the past 14 years, would be to stick with the med, and ask your doctor about ramping up the dose a bit more slowly. Some people are hyper sensitive to all of the anti-seizure meds, and it would be wise to be sure you aren't one of them. Taking this med on an empty stomach is also not recommended.
Be aware that many cases of trigeminal face pain start out with pain perceived as coming from a single tooth. If pain shifts between teeth (particularly following root canal or extraction), it sometimes gets called "atypical odontalgia", not that the label means much ("Unusual tooth pain" it is, but from what source is anybody's guess).
If you've had two different opinions on the source of your pain, then take your dental and medical records to a better qualified dentist, maxillo-facial surgeon or orthodontic surgeon for a third opinion. If your tooth pain subsides at night, then I'd say you have an indication that the pain is NOT dental in origin. But you need confirmation and advice from a medical professional.
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst, LwTN
Note: I am not a medical doctor. My background is summarized at the beginning of our article cluster in the Face Pain Info tab of our menus.
Thanks for the advice Red.
Unfortunately my doctor wants me off the gabapentin and says it is not a nuerological issue and I should see a pain doctor, He won't reduce the dose because he says 300mg is not a high dose. Since I feel I might possibly be getting some relief because I had no pain Thursday for the first time in 8 months, bad pain Friday and not too bad Saturday, and so far today almost nothing, I feel the doctor could be wrong. From your wife's experience is that how th gabapentin works or would I have to be pain free every day for it to be considered to be working? Is it possible the 300mg could be helping? I'm thinking if I didn't take it on an empty stomach I would of been OK. It's just that the nause lasted for about 24 hours after I had taken the med. I did put on seabands and that might have helped. I might wait until tomorrow and if I am not nauseous I will try it again. I also plan on getting a new doctor.
My pain lasts until I go to sleep but doesn't wake me up and is not there in the morning, but it can start in the morning or any time during the day and once it starts it builds up to a constant severer burning. I am seeing a new periodontist to rule out the dental issue.
I think your doctor might be wrong about this being a neurological issue, especially if you've had some pain relief.
Your neurologist is correct that 300 mg is on the low side, but if you got pain relief even PART of the time, your body may acclimate after a couple of weeks at that dose and then you can taper up further to improve your consistency. You can ask a pain management specialist to start you on a sustained low dose of Neurontin as a first step, explaining that you had pain relief for part of the time. See what he says.
I think your doctor might be wrong about this being a neurological issue, especially if you've had some pain relief.
Your neurologist is correct that 300 mg is on the low side, but if you got pain relief even PART of the time, your body may acclimate after a couple of weeks at that dose and then you can taper up further to improve your consistency. You can ask a pain management specialist to start you on a sustained low dose of Neurontin as a first step, explaining that you had pain relief for part of the time. See what he says.
One thing I did not see mentioned is shingles. Shingles virus can attack the trigeminal nerve and cause neuralgia as described by TN sufferers . Shingles can attack the trigeminal nerve and no vesicles show on the skin. CDC has very through article on shingles and how it causes long term pain called post herpatic neuralgia. it’s the same pain as TN when it attacks the trigeminal nerve. the statistics say 80 percent of us will get shingles. That is pretty high. About 20 percent will have serious pain after called post herpatic neuralgia. I wonder if some of you are PHN sufferers.
Shingles needs to be treated within 72 hours to prevent damage with valtrex an antiviral and prednisone. Also you can get it more than once !!!so more damage is done if it is not treated in time to prevent additional damage from second bout. !!!
My TN was caused by shingles twice in my Trig nerve. The only outward sign I had was one vesicle on my face. All the damage was internal. I was left with severe TN and face pain migraines too.
I got my shingles shot … So far working.
I had 2 oral surgeons tell me I have bone loss under the implant and my dentist and the perio in his office disagreed. I had a root canal and crown done by my dentist and developed an infection a few months later. The perio in my dentist's office pulled the tooth and did the implant. That was 4 years ago. I constantly complained of food getting stuck in the implant and the dentist sid nothing could be done, it was the shape of my gums. About a year ago I had a crown put on right next to the implant. i started complaining about food getting stuck there and it started to hurt bad from all the flossing. About 4 months ago my dentist finally said he would take the crown off the implant and make a tighter fit so food wouldn't get stuck. INstead he made a new crown with a tight fit. I still had bad pain. He couldn't find a reason and I kept telling him it was because the food was getting stuck by the new crown. He sent me to an endodontist who said he couldn't find anything wrong. My dentist then said he would do a crown on the tooth that was getting the food stuck in the hope that would solve my problem. He made a very tight fit on that and it seems my pain got worse The second oral surgeon did a cat scan of my mouth and said I had bone loss and a food pocket that needed to be fixed by a perio. My dentist had his perio look at it(the same one that did the implant) and said there was no bone loss. He took the crown off the implant to see if he could find the problem and said that everything was fine but to keep the crown off for a while. I am scheduled with a new perio recommended by the oral surgeon for a second opinion and I am glad you told me about the dysesthesia so I can ask him about it. Why is it so bad to have the bone loss? The perio and my dentist said there is always some bone loss with an implant and I had nothing wrong. Does this mean that the perio did something wrong when he did the implant? I am sorry to write so much but this is the first time I have heard of dysesthesia. How is it diagnosed?--Gizmo
the second crown was redone to fit better so food wouldn't get caught. I started to have pain after he put a crown in next to the implant about a year ago. The burning has been going on for 8 months but it has gotten really bad for at least 6 months. I have it every day but it starts at different times of the day. Most of the time it starts out hurting a little and builds up to the real bad pain. When it starts it is continuous. Do you know if the bone loss could be causing pain? I have been told it doesn't but I really don't know whether not to trust the perio, that's whi I am going for a second opinion.
Do you have any meds that have helped you? I started 300 mg of gabapentin last week and was doing OK until Saturday when I took it on an empty stomach and got really nauseous and dizzy for the next 24 hours. My doctor told me to stop but I think I was getting some relief since I had a pain free day Thursday which was like a miracle to me, and Saturday wasn't bad and Sunday it didn't start unitl 7PM. I am going to try it again tonight and see what happens. I also think I will need to see a pain specialist since the nuereo doctor says it is not a nuerological problem ( I think he doesn't know what he is talking about).
Thank you again for your information and I will discuss it with the new perio,
Gizmo
Cleo said:
The implant is screwed into to the bone and the main nerve is in the bone. main cause of root canal failure is bad dentistry. same goes for implant failure. 2 crowns on one tooth is 3 times overkill in my opinion... when exactly did it start burning? burning pain is usually nerve related. Its diagnosed by continuous burning pain.
thanks for your information. It helps to have a resident expert on board here.
I actually had B12 + b1 injections work for me for over a year. I was without hardly any pain that long, until they stopped working after I took a prescribe drug that messed up my system.
Now I am on Gabapentin, increasing it slowly til I reach 1800 mg., but it helped the first week, and as I increase I really just seem to get more shocks.
I think my neurologist really thinks that Balloon G. procedure works well; you get a shot injected in your face thru your head to your nerve where it deadens the nerve. He said it usually takes 2 injections. Can you tell me any info on this kind of procedure and what the sucesses have been?
Thanks again for your scholarly opinions. You are great.
Richard A. "Red" Lawhern said:
Vascular compression appears to be a prominent cause, Elstep, but as you say not the only one. We know that TN also emerges in a good many patients after whiplash injury. It can be a result of dental work, root canals with over-filled cavities leaking chemically active pulp replacement material into the tissues of the jaw, dental surgery, anesthetic administered directly into the mandibular branch of the nerve, etc. A number of cases also present as "idiopathic" -- cause unknown.
you said your shingles shot worked; did it relieve the TN pain? Is that what you mean? Did it relieve all the pain?
thanks
Janice said:
One thing I did not see mentioned is shingles. Shingles virus can attack the trigeminal nerve and cause neuralgia as described by TN sufferers . Shingles can attack the trigeminal nerve and no vesicles show on the skin. CDC has very through article on shingles and how it causes long term pain called post herpatic neuralgia. it's the same pain as TN when it attacks the trigeminal nerve. the statistics say 80 percent of us will get shingles. That is pretty high. About 20 percent will have serious pain after called post herpatic neuralgia. I wonder if some of you are PHN sufferers. Shingles needs to be treated within 72 hours to prevent damage with valtrex an antiviral and prednisone. Also you can get it more than once !!!!!!!so more damage is done if it is not treated in time to prevent additional damage from second bout. !!!!! My TN was caused by shingles twice in my Trig nerve. The only outward sign I had was one vesicle on my face. All the damage was internal. I was left with severe TN and face pain migraines too. I got my shingles shot ........ So far working. If anyone wants more info Ill post.