I have been in pain for 1 and 1/2 years and have had an MRI, MRA, dental CT, been to several periodontists, oral /facial pain specialists, oral surgeon, and 2 nueros and still do not know what is causing the burning pain in my tooth. I also get terrible burning in my upper palatte and upper and lower gums. The past 2 days the pain has been worse then ever and is continuous. I was on 1200mg daily of Nuerontin and was told told by my nuero to stop because if I wasn't getting any relief at that dose it wasn't going to help. The oral pain specialist told me I had TMD and made a mouth guard for me but that didn't help. I have been on a soft diet but it seems that anythng I eat causes me to get the pain or increase it. I was on .05 mg clonazapam 2 x a day, 5mg baclofen 2 x a day, and 25mg nortriptyline daily. After no relief the nueeo put me on 600 mg daily of Trileptal, 10mg baclofen 3x a day, ,05 clonazapam twice a day and 25 mg nortriptyline, still no rellief. He incresed the Trileptal to 750mg daily and for a few days I thought it might be helping but I had bloodwork which showed my sodium was 128. I cut back to 600mg of Trileptal and ate a lot of salty foods, my sodium went back to normal. The nuero increased it again to 750mg but i only increased to 700mg for one day and the following day I felt very weak, Ate a very salty meal and I felt better. Cut back to 600mg daily , ate a lot of salt and the sodium was 134. Nuero weaned me off trileptal and stayed on other meds. He wants me to go on Lyrica but i am afraid of the side effects because I don't do well with most meds. I was thinking if the Trileptal was possibly helping there might be somethng I could take to keep the sodium level up instead of having to eat so much salty foods since I don't know if it is good for pressure. I asked the nuero about increasing the nortrpityline and he said no, it would make me too tired. I was thinking about looking into the Gamma Knife surgery but the nuero said you don't want to do it unless you are sure you have TN, The problem is, how do I know if i have it? Any input would be greatly appreciated because I don't know how long I can deal with the pain before I lose my mind. Also would like to know if anyone else had the sodium problem with the Trileptal and were you able to find a solution and stay on it? Hoping to get some advice from all you wonderful people. I have learned so much from this site and sometimes think the doctors just don't know enough. Praying for some help!!! Gizmo
Wow, that’s a lot!
Tried lidocaine mouthwash?
Do you have what is called…burning mouth syndrome?
Gizmo, I am so sorry you have to be here too, but you Yves come to a great place, so many great people that know what we are going through becauce we are all dealing with this terrible monster and all these side affect causing drugs that are suspose to help us, they are very scary! I can't be much help I just want you know I am here for you like everyone else, becauce of the pain and the trileptal I feel absolutely stupid most of the time especially since the increase from 900 mgs.aday to 1800 mgs. I can't type for anything, I can't spell, I babble when I try to say anything. I don't want to lower the dose,it does help a lot more then without some of the burning, boring, aching, throbbing, in my face anything to me is better then nothing. I don't have the sodium problem. I have had great success with lycrica for my migrains it only took about 2 weeks before they were 75% better. It was increased 3 weeks ago from 200 mgs. to 300 mgs. now migrains are 85% better, don't really notice it helping much else maybe the vice grip feeling in the back of my head alittle. Oh! Just like everything else everyone is so different when it comes to these meds. The trileptal took much longer, way over a month, noticed alittle better over time, these meds. I know have to build up in your system.Hopes this helps alittle. So sorry you have to deal with this too!!!!! SOFT HUGS TO YOU IN HOPES YOU GET SOME PAIN FREE DAYS SOON!!!! DAWN
Gizmo, I think part of this terrible disease is the fact that nobody knows what will work for them untill they try it. It's graet to hear about the different meds. and how and what part it helped others that's how I suggested what I wanted to be put on at the drs. Research, research, and research the gamma knife! It has been greart for many and not so great for many and terrible for some myself included same thing with mvd back in 2006. I had a great neurosurgeon my mvd was unsuccessful due to a mess of blood vessels wrapped around all kinds of nerves it was just a mess a I ended up worse then before. Like I said before it is different in so many ways for each tn paitent. I just had a thought, before I loose it the book "striking back "may be sometning you might want to check out I think many here call it the tn Bible.A co author of the book Dr. Ken Casey is one top neursurgeon in Trenton mi. Wishing you the best . Dawn
KC I just replied to you but don't see it. I am not too good navigating this site. Please let me know if you received my reply. Thanks, Gizmo
Kc Dancer Kc said:
Wow, that's a lot!
Tried lidocaine mouthwash?
Do you have what is called......burning mouth syndrome?
Thank you for your reply Dawn. Glad the Trileptal is helping you. Did you have any side effects from the Lyrica? When I was on the gabapentin I felt spaced out and had trouble with a lot of my words, but I increased slowly and was able to get to the 1200mg per day and would have tried to keep increasing but the nuero took me off it. I also have a lot of trouble typing and sometimes when I proofread I can't believe the way some of my words came out. I don't know if it is because of any of my meds or just my age. I am 67 and sometimes wonder if my mind is not functioning properly and causing me to make so many mistakes or if is the meds. I can deal with it if only the meds helped. Send u soft hugs too!! It's so nice to have such caring people to talk to! Gizmo
Dawn Monarch said:
Gizmo, I am so sorry you have to be here too, but you Yves come to a great place, so many great people that know what we are going through becauce we are all dealing with this terrible monster and all these side affect causing drugs that are suspose to help us, they are very scary! I can't be much help I just want you know I am here for you like everyone else, becauce of the pain and the trileptal I feel absolutely stupid most of the time especially since the increase from 900 mgs.aday to 1800 mgs. I can't type for anything, I can't spell, I babble when I try to say anything. I don't want to lower the dose,it does help a lot more then without some of the burning, boring, aching, throbbing, in my face anything to me is better then nothing. I don't have the sodium problem. I have had great success with lycrica for my migrains it only took about 2 weeks before they were 75% better. It was increased 3 weeks ago from 200 mgs. to 300 mgs. now migrains are 85% better, don't really notice it helping much else maybe the vice grip feeling in the back of my head alittle. Oh! Just like everything else everyone is so different when it comes to these meds. The trileptal took much longer, way over a month, noticed alittle better over time, these meds. I know have to build up in your system.Hopes this helps alittle. So sorry you have to deal with this too!!!!! SOFT HUGS TO YOU IN HOPES YOU GET SOME PAIN FREE DAYS SOON!!!! DAWN
I think I know why my reply didn't go through. I will try again. I have a 2% solution of lidocaine and never got instructions on how to use it. It is very thick and I put it on a q-tip and dabbed it on my burning tooth. It didn't help at all. Today I put it on the tooth and my palatte and gums and used a lot of it and it helped for a very short time. Does this sound like the mouthwash you are talking about? Some people talk about lidocaine sprays but I don't know if it used inside the mouth. I will ask my pharmacist about it. I had burning mouth syndrome about 15 years ago and at that time nobody knew what it was. One doctor tolkd me I was depressed and put me on an antidepressant which I stopped after a month because it didn't help. I eventually was put on xanax and it helped with the burning a little. After 1 year the burning just stopped. It is different now because the main problem has been the horrible burning in my tooth and sometimes the palatte and gums burn at the same time. This episode I am having now is the longest one I have had without a let up. I usually have pain every day but this seems to be the worst. I think I have to give in and try the Lyrica because I can't take this pain if it continues without a break. Thank you for responding to my post. Please let me know .about the mouthwash. It is so good to be able to talk to people that know what you are going through. Gizmo
gizmo said:
KC I just replied to you but don't see it. I am not too good navigating this site. Please let me know if you received my reply. Thanks, Gizmo
Kc Dancer Kc said:Wow, that's a lot!
Tried lidocaine mouthwash?
Do you have what is called......burning mouth syndrome?
Dawn, I will get the book and hope I find some answers. I heard that the Gamma Knife doesn't work as well for TN as it does for ATN. I will certainly research it if I ever get a definite diagnosis of ATN. i have learned a lot about medications from this site so at least I know what the doctor is talking about when he prescribes different meds. I feel that I need to find another nuero who has more experience with TN but there are none listed in my area on the doctor list. I will have to try to find one by myself and I think I will probably have to try many to find the right one. Thank you again for your kind words. Gizmo
Dawn Monarch said:
Gizmo, I think part of this terrible disease is the fact that nobody knows what will work for them untill they try it. It's graet to hear about the different meds. and how and what part it helped others that's how I suggested what I wanted to be put on at the drs. Research, research, and research the gamma knife! It has been greart for many and not so great for many and terrible for some myself included same thing with mvd back in 2006. I had a great neurosurgeon my mvd was unsuccessful due to a mess of blood vessels wrapped around all kinds of nerves it was just a mess a I ended up worse then before. Like I said before it is different in so many ways for each tn paitent. I just had a thought, before I loose it the book "striking back "may be sometning you might want to check out I think many here call it the tn Bible.A co author of the book Dr. Ken Casey is one top neursurgeon in Trenton mi. Wishing you the best . Dawn
hi gizmo hoping I can help...I had terrible pain in my teeth gums etc Same things happened they wanted me to wear a mouthguard...They just don't understand its not tmj!!! Or grinding our teeth that's making this happen. I say you were right on increasing the nortriptyline That's what I am on at 75 mg a day and Im not tired I wake drink coffee...work from home all day...I workout a lot....sometimes take naps but that happened before any of this anyways It helped a lot with my teeth pain. I started on a low dose 10mg then 25mg then 50mg I still noticed some pain but it was getting better at 75 mg I have found a lot of relief from all the scary pain..
Hi jstagrl29, Thank you for your help. What is your diagnosis? Are you on any other meds besides the nortriptyline? I asked the nuero to increase my dose and he said no. I will try to convince him to do it. What kind of doctor prescribed the nortriptyline? I am 67 and I don't know if a larger dose would effect me differently than you but I would be willing to try it. Ther worst that can happen is that I become tired. I am also goingto try to get the lidocaine spay that seems to have helped a lot of people. If my nuero won't increase my dose I already have an appointmet with another nuero who hopefully will increase it. I will let you know what happens. Thanks again for your help. Gizmo
jstagrl29 said:
hi gizmo hoping I can help...I had terrible pain in my teeth gums etc Same things happened they wanted me to wear a mouthguard...They just don't understand its not tmj!!! Or grinding our teeth that's making this happen. I say you were right on increasing the nortriptyline That's what I am on at 75 mg a day and Im not tired I wake drink coffee...work from home all day...I workout a lot....sometimes take naps but that happened before any of this anyways It helped a lot with my teeth pain. I started on a low dose 10mg then 25mg then 50mg I still noticed some pain but it was getting better at 75 mg I have found a lot of relief from all the scary pain..
my diagnosis is I have TN type2 I saw 4 dentist orthodontist, endodonist, and an oral surgeon who finally pointed me in the right direction...then to a maxifacial specialist who prescribed me anti sez meds which actual had an adverse reaction with me....made me feel worse so I stopped immediately then I tried chiropractic for months which relived me a little only to come back when I stopped a neurosurgeon first and then a neurologist who finally prescribed me with nortriptyline...truth is doctors don't know crap about this disease.....they don't make me tired really I wake up do things all day even workout. keep me posted i'll friend ya message me anytime!
looks like we are on similar paths... I tried trileptal and Topamax and both made me throw up, and I still to this day don't know if I had the flu or not, but while taking Topamax I threw up all night and had a 100 degree fever for two days until I stopped taking it and now I am taking 25mg of noritriptiline, and upping it once per week to 75 mg of it. I have so many questions for you... did you gain weight from the noritriptiline? You are right about most drs don't know jack about all this, and when I try to educate them on it, you can tell they feel extremely uncomfortable being in the learner role rather than the know it all role. You had mentioned on another discussion that tooth pain is how everything started with you, which makes me think some other things got worse for you over time. Dare I ask how things changed for you over time? It is only one year for me, having this, and I worry what is yet to come in the future. Now in retrospect did the tooth pulling and root canals make things worse for you, or did things just stay the same for you??
jstagrl29 said:
my diagnosis is I have TN type2 I saw 4 dentist orthodontist, endodonist, and an oral surgeon who finally pointed me in the right direction...then to a maxifacial specialist who prescribed me anti sez meds which actual had an adverse reaction with me....made me feel worse so I stopped immediately then I tried chiropractic for months which relived me a little only to come back when I stopped a neurosurgeon first and then a neurologist who finally prescribed me with nortriptyline...truth is doctors don't know crap about this disease.....they don't make me tired really I wake up do things all day even workout. keep me posted i'll friend ya message me anytime!
Hi Gizmo
The neurologist who wouldn't increase your nortripiline is an idiot. I am on 25mg of nortripline and in a wk I have to take 50mg and in a week after that I have to take 75mg of nortriptine. I got this script from Dr. Ken Casey who co authored the book Striking Back and he surely knows what he is doing. The reason you have to up the dose slowly is to counter the sedating effect and the theory is, if you very slowly increase the dosage, the sedating effect will be minimum.. Heck if you were able to tolerate Trileptal at the amounts you were on, surely you should be o.k on eventually taking 75mg of nortripeline. It is supposed to be the least sedating of all the tricyclic antidepressants. I took only 300mg of Trileptal in the morning after sleeping a 9 hr night, and I immediately slept for another 4 hours after taking Trilepal, it knocked me out cold that stuff.
Mine is a similar story to your other replies. Terrible pain that originates from one tooth, spreads to neighbouring teeth and into my jaw, cheek and ear. I had a root canal done that was not necessary. I also got DXed as having TMJ and was given a night guard. This is not TMJ!
I agree about trying a higher dose of Nortriptyline. I take 40mgs of Amitriptyline, which is a very similar medication. Even 40mgs is a low dose. I did not feel any relief with lower dosages and it takes quite sometime for it too build up and start working.
I had problems with fatigue when I started the Amitriptyline. I increased it very slowly and my body got used to the medication just fine. I take it in the evening around 6 or 7pm. I sleep like a baby which is a welcomed side effect for me. Other than that it is working and I feel pretty darn good!
Oh sending love. I take lyricia with baclofen and tramadol and duloxetine. I’m OK have to watch dosage levels to keep my brain function. X