Hello all, my real name is Barry and I'm so glad to find some info on this issue.
Background:
This all started in Oct of 2010, a few weeks after having two teeth extracted but they had healed just fine. I got a sinus infection and the pain started there, after the infection was gone the pain remained in the area where these two teeth were pulled( my upper left jaw). After a few weeks, I went to the dentice thinking it was the next tooth and began this journey from there......I have been told I have TN by two neurologists, two neurosurgeons, two dentice, three oral surgeons and I still doubt the diagnoses. Been through MRI-CT scan, and anti convulsive medication up to 2400mm which made me very sick. I have had one tooth pulled and one root canal that still has not been capped. My neurologist sent me to a get a consult on having a cyber-knife procedure and I'm very uncertain if this is the right coarse for me. The only Med's I'm on now is Vicodin 5-500, 3 per day.
Pain description:
Man I hurt so bad, It is all the time now. Feels like,,, if I could just pull out two teeth all would be fine but x-rays say they are fine. Win I wiggle the one that had the root canal, it make the pain much worse. Good god,, I hurt so bad I' can barely get my job done and get home to bed. Should I go to the Hospital?
Is Surgery for me??
This has ruled my life for two years and I'm not sure..... well just not sure....?
Sorry to hear your having a terrible time with this.Most of us have been down that road and yes we have the t-shirt to proove it.Just my experience so please dont take this to the bank.
No matter what narcotic pain medication it will not help TN.Myself tried everything from Tylenol 3's to Percocet and also Mophine.....to no avail.But ther is a temporary solution at your hospitals ER.Its called TORODOL and this must be injected into a muscle ofcourse.So if the pain ever gets so bad you cant handle it go to your ER ask if the residing doctor is familiar with TN.Hopefully he/she will be and ask if its possible to get a shot of Torodol this will relieve your pain but only temporaly.Torodol in capsule form is no good for me.
I truly hope you can find out your problem and wish you many painfree days.
I have the same kind of pain you have..It started with my lower left side wisdom tooth being extracted. It went down hill from there...I'd NEVER had pain before that..After the wisdom tooth was gone the next tooth started throbbing..Eventually I had that one taken out (bad root canal-infected) then the pain moved to the next two bottom teeth..I have been to 4 dentists who have taken x rays of the teeth and all told me they were healthy teeth..My dentist actually told me he didnt want me as a patient anymore cause he never knew anyone who had as many teeth aches as I had!!! I was in tears and a ton of pain..Finally the last dentist told me I must have a neurological /hyperactive nerve problem and to see a neurologist. So i did..He said it wasnt a neurological problem but a tooth problem..I told him the dentist wont treat me ..So the neuro gave me Amitriptyline to try..It helped take the throbbing away so I didn't run in front of a bus to end the horrible throbbing constant pain... If I do have pain I take Ibuprophen which amazingly does take the breakthrough pain away..I know how you feel..If you need someone to talk to just friend me and we can talk..I hope you feel better soon.
Hi Barry, your profile says you have ATN so I'm surprised they are recommending a knife procedure. Is it non-destructive? I was under the impression that ATN shouldn't be treated with nerve-destructing procedures. I think there are plenty of times I'm desperate enough that I would accept it if they offered anything though.
Have you tried any of the tricyclic anti-depressants? I've heard they work the best on the constant burning pain. I have to get through 3 weeks of Tegretol before I can try the tricyclics though.
Hi Barry, you’ll find many of us have at one time or another doubted our TN diagnosis…it’s easy to do, especially if you have pain in your teeth.
That being said, if your dentist has xrayed your mouth, and nothing shows up and everyone is diagnosing TN based on your description AND if at first the anti-convulsants worked for you it’s more thn likely TN.
There is NO definitive test that can accurately diagnose TN, it is a puzzle, where certain pieces have to fit.
Unfortunately it takes time to find the right med or meds in combination to find relief. We all tolerate them differently, there is no one magic pill. This of course sucks! Because the pain is relentless and horrid and draining in the meantime.
The key is finding a doctor/Neuro that is willing to work with you and find that magic combo for you.
My best advice in terms of researching procedures other than meds is reading as much as you can, search through our forum archives, google. Get ahold of the book “Striking Back”.
And most importantly make an informed decision when your pain is under some control, not out of desperation for relief.
Many people find the right med(s) and after a month or so pain free start to reduce that med only to find themselves in a remission from pain. Remissions can last weeks to months to years!
So it’s really important to learn as much as you can and then make the right decision for you.
In the meantime you can try heating bags that you can microwave, or ice packs, lidocaine cream or patches or a med for breakthrough pain that you can take on an as need basis.
The facial pain specialist dentist that I saw in San Francisco made me a mouthpiece that I put lidocaine cream in (has other meds in it, too) and it fits to my teeth and gums. It works for a short time for me, but it's worth trying if you need instant relief. He said it works longer for a lot of people.
First let me say thanks so much for the responses and caring comments. One of the worst things about this affliction is that no one in my daily life has ever heard of TN. Therefore, it's hard for them to understand what I'm going through. If I was to wall out with half my face cut off (like it feels) the reaction would be different. So just talking to others who have some experience is great! I'm still in the depths of major pain and only hope things improve soon. When I was on Tegretol the symptoms eased some what but had a major reaction at 2400mm. Since then I have had issues with all these types of medications.
I really think I need a doctor that works with TN on a regular basses but this is not easy in my area. My current Dr. is good but does not have any other TN patients I know of. I agree that recommending the Cyber Knife makes me a little confused based on what I have read about ATN. I really think my Dr. does not know what else to do at this point. Frankly neither do I....
I will ask about the items and medications you all mentioned,, I really appreciate the help!
Have they tried you on tegretol (carbamazepine)? It works pretty good for me. I HAVE had to increase and get up to 1200mg a day split between 3 doses to get a pretty good pain control. I still get a few little shocks now & then & a burning/tingly/crawling type feeling in my cheek. The meds make me forgetful and tired, but at least it's not excruciating (most of the time). When I first went up to 1200mg a day, I tried to do it in 2 doses and was terribly drunk and sick. So I decided to split it in 3 doses. It helped! My neurosurgeon says we have to play with the meds sometimes. Regular pain meds don't work for me.......AT ALL. But the anticonvulsant did wonders. I had pretty bad breakthroughs til I got up to the dose I am on now. Now they are mostly mild ones. Good luck to you. (((((((((((hugs)))))))))))
Hi, I was going to suggest the tricyclic antidepressants too. They are known to help with the burning pain... I take Effexor for my burning pain the same as you I wanted to rip my teeth oout!!! The roots felt like hot prongs goin up into my jaw, and in another arean a nail going up into my jaw. The effexor worked for me. I have been on it a year and it still works. It is an anti depressant. :)
A couple of ideas - please get to the acceptance stage when you are comfortable. We are only 12 in 100,000......Rare
The more you read/ask/learn about this disease - the faster to a possible better quality of life. If you can't research treatments and surgeons and such - have somebody help you. I know the pain is blinding. Any neurologist or neurosurgeon you see should have plenty of TN patients or don't bother.
You can also incorporate a pain management doctor while you wait and decide what you are going to do. If you are going to have a nerve damaging procedure --- make sure and research it to no end! That book above is out bible here.
This is a disease that has been around for centuries - and on this site alone - more than 1,000 teeth have been lost/killed/pulled for no reason --
You an go up on the "groups" tab and go to the topical pain relief group - many Band-Aid remedies there that get us thru the night.
If you find that somebody is wanting to do cyber knife on you -- please make sure that they have done mannnnny of them - and even before that - possibly research MVD options -- if you have gamma - then try MVD - chances lowered for success.
Lastly for now ---- go to Google: Images
and type in Atypical Face Pain and/or Trigeminal Neuralgia - there you will find the images/graphics you describe that put our pain into concrete tangible pictures.
Hi Pilot, first let me say sorry for all your pain and distress from the monster we call TN. It is such N unprdictable disease. It creeps up on us and confuses us too many times to count. Alot of us had started with what we thought were dental problems, only to be reassured time after time that it is not our teeth. Too many extractions only to ne left with phantom tooth pain. The rocking back and corth from dentist, to ENT, to neurologist. It takes so many times to actually find a doctor who knows TN and has maybe seen it in his practice at all in his medical career. The waxing and waning terrible. This is a great site for imformation and more support than you could have wished for. Lots of information and resources available her too. We are all in the same situation at some time or another. Mimi is right about Striking Back along with Donna. The bible for TN sufferers. As far as meds go thise sometimes have to played with sort of speak. Which meds work and others in combo. This pain does wear you down phsically and emotionally. There are lots of trade offs with the meds used to help folks with TN. Its a matter of finding the ones that do. Do your research on procedures before jumping in. If you have a good doctor onboard that you trust that is so importatant. More important is being your own advocate and thats for any facet in life. Remember knowledge is power. Wish you luck and hopes of getting your pain under control. We are here for hou Pilot!
My Best
joanne
Well I have managed to get through the worst episode I have been through because of TN . I'm not out of discomfort but things have calmed down for some reason. If that happen's again I will be in the HP for sure.
Do any of you experience my symptoms? constant dull to throbbing pain in the jaw, numb cheek and tong but not always, sharp pain when chewing on that side but not all ways, sharp pain for no reason. Hot and cold drinks can bring pain. However, I have no problems with touching the side of my face, shaving and such is okay.
Are there any cases were TN went away on it's own? If so is that common?
I have begun reading Striking Back and so far it is cool!
I'm so glad things have calmed down! As far as relating to your symptoms, you will find that everyone is so different, it's hard to find one person that has all of the exact symptoms. I have pain throughout my teeth and gums on the left side, it feels like an achy fire. I do not even try to chew on that side anymore. I was getting sharp pains out of no where before I started the Tegretol. Sometimes hot and cold drinks cause pain and sometimes not. I have no trigger points that seem to cause the pain to get worse. I believe there are cases where TN went away on it's own, but that is rare.
I'm also reading Striking Back and it is so informative!! Enjoy it!
Yes, I have had the same types of pain you are describing - I think they have told me that I probably have both types of TN 1 & 2 - maybe you have the same. I can't even tell you the last time I chewed on my left side intentionally. Tegretol is the only drug that has ever worked for me and I have tried many. The highest I ever had to take was 800mg before the gamma knife but I was so tired of taking it - I had the Gamma Knife or Cyber Knife procedure you are talking about - I had that like 1 1/2 years ago. It took like 3 months for pain to be gone completely, but I must say it was gone completely and I praised it and thought it was the most wonderful thing out there. The pain free or decreased pain result can last 1 year - 3 years and it was a wonderful 1 year and three months - but mine just came back 10 times worse than before. I don't know if I am just unlucky or the returning pain after cyber knife is always worse etc. - look into that. I haven't had a chance, but I don't remember anyone telling me it would be worse when it came back. I am on 1200mg of Tegretol now and it is helping tremendously - I still feel pains and still feel like I have a toothache here and there and if I bite my teeth together on the left - well I just can't do that. Lidocaine patches on my face have helped as others have suggested, so you may want to try that. I feel for you - I totally understand your pain and it is hard for others to understand around you, but that is why this site is helpful. I don't know if I could do it over again if I would do the gamma knife - I may have just gone for the MVD surgery the doctors wanted me to do and have a much longer remission time - that is what I will look into next. Hope your pain decreases soon. If you want to ask me about cyber knife or gamma knife - I can answer questions about my experience.
Thanks to both of you for the support and great information!
Jeanine, yes please........ I would really like to know how the gamma knife experience went. After trying all the drugs my doctor knows of, she basically said the only thing left is surgery. I guess this means if I don't have the procedure there's nothing else she can do for me. Not sure what will happen if I decide not to have the procedure. Anyhow.......
What made you decide the procedure was right for you? Did the Doctors indicate the pain would most likely return? Did it hurt? Did you feel like it was the right decision now? Were there any side effects you did not expect? What do the Doctors want to do now? And any other information you think would help me in my decision! Thanks again!!
Have you been on a high dose of Tegretol?? and if so, for how long? It can take days for it to level out and I had to spread mine out over the day 400 in am, 200-400 in afternoon and then 400 again before bed. Use the Lidocaine patch if you can - it really helped me - it is worth a try - it took days to get me level up and I was in agony until it was. That was this past week or two.
Before my Gamma Knife, I wasn't nearly as bad - I had had TN for years already and was able to deal with it and slowly went up to 800mg Tegretol. I wasn't having severe pain all the time, but dull pain some days and those sharp electrical pains that would stop me in my tracks sometimes. I am a nurse and I do Botox and Fillers and I would have a needle in someone's face and get an electric shock I had to try to hide - It wasn't fun. Even the 800mg made me feel "stupid" and forgetful and tired. So, I looked into my options. I decided on the Gamma Knife because the big surgery was just so major to me and so much downtime etc. I thought if it would give me a few years of peace, I would go for the smaller procedure and possibly repeat it or move on to something else. I was really hoping for a good 3 years and then repeat it and get another 3 years - that was the hope. I only got 1 year 3 months pain free - but it was a nice year and 3 months. The procedure itself is not too bad - after the pain you are dealing with - that will be nothing. It is a strange feeling getting the halo put on your head - that is more a pressure feeling and a very strange feeling. They give you some good drugs so you are a little loopy. I really didn't find the whole procedure too bad, the drugs I was on made me have a nice "trip" while in the MRI machine and I didn't feel much pain. I was home within a few hours and felt fine. The worst part was the swelling - my face was really swollen over the next few days - I thought I would go to work the next day, but I looked like a freak. It also takes a while for the pain to subside - took me 3 months for it to go away completely - so you have to be patient. I have heard of others having problems afterwards like numbness in their face and other things. I went to someone that majorly specializes in doing Gamma Knife. Make sure if you are considering it that your insurance covers it and don't take the doctor's office word for it - call your insurance yourself. I trusted them and I ended up getting a bill for $70,000 - that ended up getting fixed - but make sure - some insurance companies consider it experimental. I guess if I had to do it over again, I would just go for the big surgery if they say that will help you. I kind of wish I did, I didn't want to go through that, but now I am considering it anyway. I was in a better place to do it - I could have taken the time off easier etc. And, the results of that, if it is successful, last a long time - up to 10 years. I was also told, but check into this yourself, that the more procedures you do like balloon, or gamma knife - it takes a small percentage off of the success of MVD if you need it in the future. My doctor would only do Gamma Knife twice for any person.
Your symptoms can subside all on their own for a while as well - that happened to me the several years. When you think back on it, did you have unexplained dental pain on and off for some time? Did your dentist fill cavities or do things for you, but the pain didn't get better?? That is how it went for me and a lot of people.
I am curious - did the neurosurgeon recommend MVD first - as your best result? Every neurosurgeon I saw first recommended that as having the best result possible, but since I didn't really want to do that at that time, then they moved on to the Gamma Knife or balloon etc. depending on the doctor and their "specialty". I am surprised if that is the first option they are recommending. I would ask about MVD as well, and look into that. It is major surgery, but is, as I was always told, first choice and best outcome surgery.
Well it's a long story but this is my second neurologist. The first said I had Face Pain Syndrom and never mentioned TN. He was from another country and I could barley understand him. He had me on tegratol but only up to 600mg in a years time. I left him because he was more than happy to schedule me for bi-monthly appointments and charge me $200 for each visit. Then he only up'ed the dosage by 100mgs and say,, see you next month. I was dyeing!!
The Doctor I'm with now was recommended by my oral surgeon after shooting steroids in my jaw. On the first visit I was told I had TN and put on Trileptal. This was working good until I hit 2400mgs and I had avary bad reaction. She has now put me back on Tegrtol and i'm up to 1800mgs. As time goes on i"m unsure this is the right doctor either, She has never said anything about MVD just the Cyber Knife that is performed by doctors in her group. This is affliction is bad enough but the searching for the right doctor at the same time is depressing. Not to mention the fact that no one is really attending to the pain and wasted time and $$.
I'm at the point, if I could remove my head for a while I would.
I know how you feel wanting to remove your head - if I could have done that last week - I would have. It does sound like you do not have the right doctors. Have you only seen neurologists?? Maybe you should see an actual neurosurgeon. You need to get another opinion. I went to 3 good neurosurgeons - every one of them said MVD - first choice - best results but I did not want to do that and wanted to a lesser invasive procedure and I chose Gamma Knife (cyber knife). There are definitely combinations of drugs that can be done too that might help - you may need something with the Tegretol. See if you can get a doctor to prescribe the Lidocaine patches - they really did help me in combo with the Tegretol - especially at night. I think you need to see someone who has had a good history with TN - see a neurosurgeon.
It is an extremely frustrating condition and yes - depressing - I understand that feeling completely. I am sorry for what you are going through - but you are on the right track. Some people go years and years with an incorrect diagnosis - there will be pain free time ahead.
Go to a surgeon who has experience in MVD surgery. The other surgeries destroy the nerve, so it can cause other problems. I am going straight for the MVD when meds aren't working anymore. I am on 1200mg Tegretol a day and I have to split it into 3 doses so I can function. If I have to go much higher, I will do the surgery. So far, this dose does me pretty well. MVD is the most invasive, but it does not destroy the nerve. So if it doesn't work, you can try a different procedure, but not always so the other way around. Good luck!
Pilot said:
Well it's a long story but this is my second neurologist. The first said I had Face Pain Syndrom and never mentioned TN. He was from another country and I could barley understand him. He had me on tegratol but only up to 600mg in a years time. I left him because he was more than happy to schedule me for bi-monthly appointments and charge me $200 for each visit. Then he only up'ed the dosage by 100mgs and say,, see you next month. I was dyeing!!
The Doctor I'm with now was recommended by my oral surgeon after shooting steroids in my jaw. On the first visit I was told I had TN and put on Trileptal. This was working good until I hit 2400mgs and I had avary bad reaction. She has now put me back on Tegrtol and i'm up to 1800mgs. As time goes on i"m unsure this is the right doctor either, She has never said anything about MVD just the Cyber Knife that is performed by doctors in her group. This is affliction is bad enough but the searching for the right doctor at the same time is depressing. Not to mention the fact that no one is really attending to the pain and wasted time and $$.
I'm at the point, if I could remove my head for a while I would.