Thank you, Min, and you're a sweetheart for thinking of me!
Min said:
If it's burning mouth pain...I am taking amitriptyline for it. :-) and well really teeth pain in general. The burnin is so bad I don't notice the rest of what's goin on, but the amitriptyline makes me better!!!
I also have the same issue, a lot of pain in my teeth but there is never anything wrong with my teeth. I am currently having a flare up after almost a year in a good place. I am on trileptal and I have increased the dose now during the flare. I was wondering what your dose of amitriptyline is as I am currently on that, I have taken it for years for migraines. I am wondering if I increase that it might help (based on your comment, it gives me hope)
I am brand new here. I am glad to find others going through this. I don’t feel so alone and crazy 
Hi Dawndew, can I ask you, do you (or did you) get your electric shock pain/s in your teeth/mouth? You're really lucky to have had a remission period - oh what wouldn't I give for one of those. Every time mines dies back a little (a rare occurrence) I always think "Oh, am I having a remission?" But my hopes are always dashed. Damn it.
On the other hand, I bet it's really depressing when you've been in remission - and some lucky sods have them lasting years - and then the b*stard thing comes back. Much as I envy you, I don't envy how you must be feeling right now.
Do you find, as I do, that although the Tegretol deals with the shocks (and I had even better success with Lamotrigine but unfortunately had to give it up) that the pain just mutates into a 'sensitivity'? It doesn't really ever go away?
Thank you so much for the reply Woman With The Electric Teeth (BTW awesome name!)
Yes! I do get the shocks of pain in my top teeth, also in my ear and my cheek but my teeth always feel sensitive. But I get some background pain I guess I would call it along with the shocks. But it always starts with my teeth and they never feel right, even when I was in ‘remission’. So I was curious when I saw that amitriptyline helps with the teeth issue. I have taken it for many years so maybe I need a bigger dose to feel the benefit.
I am thankful for that time I was in a good place pain wise. Now I feel like I am back at square one because of the flare up currently. I was desperately looking online for any help I can find and found this site. I was reading through all these discussions and I feel like I found people that actually get it. People in my life actually don’t get it and I get ‘she’s crazy’ looks all the time.
But the teeth thing I get. I would almost rather have something ACTUALLY be wrong with my teeth than it be a flare up. The dentist thought I was a lunatic when he said my teeth are fine. But I guess you understand that as well 
Woman with the electric teeth said:
Hi Dawndew, can I ask you, do you (or did you) get your electric shock pain/s in your teeth/mouth? You’re really lucky to have had a remission period - oh what wouldn’t I give for one of those. Every time mines dies back a little (a rare occurrence) I always think “Oh, am I having a remission?” But my hopes are always dashed. Damn it.
On the other hand, I bet it’s really depressing when you’ve been in remission - and some lucky sods have them lasting years - and then the b*stard thing comes back. Much as I envy you, I don’t envy how you must be feeling right now.
Do you find, as I do, that although the Tegretol deals with the shocks (and I had even better success with Lamotrigine but unfortunately had to give it up) that the pain just mutates into a ‘sensitivity’? It doesn’t really ever go away?
Hi Dawndew, no, I've never used amitriptyline, but Min uses it and she and a couple of other people have suggested it to me. It seems to be good for people who have teeth based problems. I have discussed it with my doctor but he seems to think it's only good for Type 2 TN (atypical). I'm seriously beginning to doubt his wisdom, however, and am going to suggest that if my new drug (Gabapentin) doesn't work for me that we try amitriptyline next. It may be that you don't have it at a critical dose yet, or you are not combining it with the right drugs? You can always put a post up asking for people who use it and find out what the satisfied users, as it were, combine it with.
All that said, I am really glad to find a kindred spirit in the 'never really goes away' front. This has been a very hard thing for me to deal with. I know exactly what you mean about wishing it was a legitimate tooth problem. I went through the tortures of the damned when I was first diagnosed, absolutely sure that I should go ahead and have my tooth root canalled, convinced I was being really foolish in not doing it. But the very fact that drugs make the pain better and worse as they are used and withdrawn proves it is not a tooth problem. Genuine toothache couldn't be masked for long by an anti-convulsants.
My electric shocks went as soon as I was on just 200mg of Carbamazepine, but even up as high as 800mg, and after that a combo of 600mg and 50mg of Lamotrigine, it never cleared the background 'sensitivity' pain. However, I can really recommend Lamotrigine to you (although it needs to be with Carbamazepine to get the best effect). It was great at removing mouth pain. I only got as far as 50mg, which is a ridiculously low dose, and my mouth felt almost normal. Certainly liveable with. The only trouble was terrible side effects. I had a six week migraine on it, literally, with severe nausea, and a whole host of other problems. I didn't realise it at the time, but now, off it, and with withdrawal just about past, I realise how much it had changed my personality and the really bizarre ways I was acting. The really scary thing about it was I didn't know. You know, like the truly crazy person who doesn't know he's crazy because - hell - he's crazy! Again though, I think that was just my bad luck. Most people seem to tolerate Lamotrigine well, and here's the irony, they actually use it to treat migraines!
Anyway, best of luck with your latest TN adventure. Let's hope it's a short one and you're back in remission soon. Let me know if you ever find a good drug or drug combo that works for your teeth. I'd really appreciate it. I'm going to friend you so we can stay in touch!
dawndew said:
Thank you so much for the reply Woman With The Electric Teeth (BTW awesome name!)
Yes! I do get the shocks of pain in my top teeth, also in my ear and my cheek but my teeth always feel sensitive. But I get some background pain I guess I would call it along with the shocks. But it always starts with my teeth and they never feel right, even when I was in ‘remission’. So I was curious when I saw that amitriptyline helps with the teeth issue. I have taken it for many years so maybe I need a bigger dose to feel the benefit.I am thankful for that time I was in a good place pain wise. Now I feel like I am back at square one because of the flare up currently. I was desperately looking online for any help I can find and found this site. I was reading through all these discussions and I feel like I found people that actually get it. People in my life actually don’t get it and I get ‘she’s crazy’ looks all the time.
But the teeth thing I get. I would almost rather have something ACTUALLY be wrong with my teeth than it be a flare up. The dentist thought I was a lunatic when he said my teeth are fine. But I guess you understand that as well
Woman with the electric teeth said:
Hi Dawndew, can I ask you, do you (or did you) get your electric shock pain/s in your teeth/mouth? You’re really lucky to have had a remission period - oh what wouldn’t I give for one of those. Every time mines dies back a little (a rare occurrence) I always think “Oh, am I having a remission?” But my hopes are always dashed. Damn it.
On the other hand, I bet it’s really depressing when you’ve been in remission - and some lucky sods have them lasting years - and then the b*stard thing comes back. Much as I envy you, I don’t envy how you must be feeling right now.
Do you find, as I do, that although the Tegretol deals with the shocks (and I had even better success with Lamotrigine but unfortunately had to give it up) that the pain just mutates into a ‘sensitivity’? It doesn’t really ever go away?
yes we are certainly kindred…I’m just sorry it is in a painful way
I have been on amitriptyline 50 mg for a long time for migraines and it does help if you have a headache for sure. I started out on Neurotin for the TN and I initially had good results but then I didn’t and even on the max dose it didn’t help me. Then I went to Lyrica which didn’t help either. Then I went to Trileptal and that ended up being the one the help, 300 mg. but I always had that tooth sensitivity that lingered. Now I am back in TN pain land my doctor told me to double the Trileptal and I am not handling it well. I am sick to my stomach and seeing and hearing all kinds of things that just aren’t there but still in pain. I called my doctor today but never heard back so I think I am just going to scale back to my old dose until I talk to her. I have never tried tegretol or Lamotrigine so maybe these are meds I can mention to my doctor. She is of the opinion that regular pain meds will not help even coupled with the meds that are suppose to be for nerve pain. But again this is the same doctor who doesn’t call me back when I call with an issue
Thank you for the friend request. I so hope your new meds are the trick for you. You are due for a remission! And thank you for your advise
Woman with the electric teeth said:
Hi Dawndew, no, I've never used amitriptyline, but Min uses it and she and a couple of other people have suggested it to me. It seems to be good for people who have teeth based problems. I have discussed it with my doctor but he seems to think it's only good for Type 2 TN (atypical). I'm seriously beginning to doubt his wisdom, however, and am going to suggest that if my new drug (Gabapentin) doesn't work for me that we try amitriptyline next. It may be that you don't have it at a critical dose yet, or you are not combining it with the right drugs? You can always put a post up asking for people who use it and find out what the satisfied users, as it were, combine it with.
All that said, I am really glad to find a kindred spirit in the 'never really goes away' front. This has been a very hard thing for me to deal with. I know exactly what you mean about wishing it was a legitimate tooth problem. I went through the tortures of the damned when I was first diagnosed, absolutely sure that I should go ahead and have my tooth root canalled, convinced I was being really foolish in not doing it. But the very fact that drugs make the pain better and worse as they are used and withdrawn proves it is not a tooth problem. Genuine toothache couldn't be masked for long by an anti-convulsants.
My electric shocks went as soon as I was on just 200mg of Carbamazepine, but even up as high as 800mg, and after that a combo of 600mg and 50mg of Lamotrigine, it never cleared the background 'sensitivity' pain. However, I can really recommend Lamotrigine to you (although it needs to be with Carbamazepine to get the best effect). It was great at removing mouth pain. I only got as far as 50mg, which is a ridiculously low dose, and my mouth felt almost normal. Certainly liveable with. The only trouble was terrible side effects. I had a six week migraine on it, literally, with severe nausea, and a whole host of other problems. I didn't realise it at the time, but now, off it, and with withdrawal just about past, I realise how much it had changed my personality and the really bizarre ways I was acting. The really scary thing about it was I didn't know. You know, like the truly crazy person who doesn't know he's crazy because - hell - he's crazy! Again though, I think that was just my bad luck. Most people seem to tolerate Lamotrigine well, and here's the irony, they actually use it to treat migraines!
Anyway, best of luck with your latest TN adventure. Let's hope it's a short one and you're back in remission soon. Let me know if you ever find a good drug or drug combo that works for your teeth. I'd really appreciate it. I'm going to friend you so we can stay in touch!
dawndew said:Thank you so much for the reply Woman With The Electric Teeth (BTW awesome name!) Yes! I do get the shocks of pain in my top teeth, also in my ear and my cheek but my teeth always feel sensitive. But I get some background pain I guess I would call it along with the shocks. But it always starts with my teeth and they never feel right, even when I was in 'remission'. So I was curious when I saw that amitriptyline helps with the teeth issue. I have taken it for many years so maybe I need a bigger dose to feel the benefit.
I am thankful for that time I was in a good place pain wise. Now I feel like I am back at square one because of the flare up currently. I was desperately looking online for any help I can find and found this site. I was reading through all these discussions and I feel like I found people that actually get it. People in my life actually don't get it and I get 'she's crazy' looks all the time.
But the teeth thing I get. I would almost rather have something ACTUALLY be wrong with my teeth than it be a flare up. The dentist thought I was a lunatic when he said my teeth are fine. But I guess you understand that as well :(
Woman with the electric teeth said:Hi Dawndew, can I ask you, do you (or did you) get your electric shock pain/s in your teeth/mouth? You're really lucky to have had a remission period - oh what wouldn't I give for one of those. Every time mines dies back a little (a rare occurrence) I always think "Oh, am I having a remission?" But my hopes are always dashed. Damn it.
On the other hand, I bet it's really depressing when you've been in remission - and some lucky sods have them lasting years - and then the b*stard thing comes back. Much as I envy you, I don't envy how you must be feeling right now.
Do you find, as I do, that although the Tegretol deals with the shocks (and I had even better success with Lamotrigine but unfortunately had to give it up) that the pain just mutates into a 'sensitivity'? It doesn't really ever go away?
Hi Dawndew, we definitely are kindred. I think you're the first (or maybe second) person I've met on here who also had hallucinations. I suffered with them on both Tegretol and Lamotiringe, although they were different.
But let's talk about the Trileptal first. That's Oxcarbazepine, the sister drug to Carbamazepine (Tegretol). I know, all these different names are a pain, especially when you add in even more differences between the UK and US. Did they not try you on Carbamazepine first? That's the gold standard drug and nearly everybody is put on that first. I would certainly recommend it, especially if you combine it with Lamotrigine, although there is the 6 week migraine problem! But it did work for me, on the mouth pain, and I was desperate not to give it up, but it was killing me. But everybody's different. It might be perfect for you. Worth a shot if you don't get any further elsewhere.
Your doctor is right though about OTC opiates (painkillers), unfortunately. They don't work on TN pain. Unless you have some Type 2 TN. They do seem to work for some ATN sufferers. Certainly they do use them - lucky b*stards!
But back to hallucinations. Wow, great to meet someone else who had them. I had bad hallucinations for the first couple of months on Tegretol. Spiders. I saw them everywhere. Fortunately, I realised they were not real, but it wound me up something awful. I spent most evenings with my legs curled up on the sofa because I was frightened of them running over my feet, and I couldn't tell real from fake. (My house gets big brown hairy things on a regular basis that love to bolt across my carpet. Yuk.) My most spectacular 'vision' was once convincing myself that the (bird) stencil in my bedroom was a huge spider coming out the wallpaper. But I also once saw a sparrow in the fruit department of my local supermarket, and, inexplicably, two oranges on a park bench! I saw people standing all over the place that weren't there too. I had terrible trouble in low light conditions. It was dim the lights, out come the spiders.
On Lamotrigine I got them again, but they were completely different. So different it took me a few days to realise what was happening. They were much worse. They were spatial and perceptual. When I was just newly on it they were very bad. I once imagined my brain was in two halves, one orange, one teal (that was very important that, that it was teal, not just any old turquoise/jade colour!), and that they were split and out of synch, jutting out. I would just stand in the one spot, staring at these things inside my own head. Then I started getting spatial ones, where I would feel very tall, too tall for the room, or like I could reach out my hand and touch a cabinet five feet away. Every night I would lie in bed and think the same loop of 'film' over and over, but there would always be some fractured idea in it, like I had to line up the four corners of some image in my head or I couldn't go to sleep. Even asleep I'd be dreaming that same thing, over and over, so I didn't really know when I was asleep. Sometimes I was sure I dreamt it all night long because I used to wake thinking the same thing. Horrible.
Fortunately, they faded, but it wasn't till I came off Lamotrigine that I realised how much it had changed me. It definitely made me slightly crazy. I don't really remember the 6 weeks I was on it, and it wasn't just the pain that made me forget that time either.
Ah, the fun times of TN. Don't you just love it.......
P.S. Sorry, meant to reassure you - the hallucinations and nausea do die down with Tegretol but it can take a while (as in weeks, not days), especially when you go up a dose. I imagine it would be the same with Trileptal, so if you can sit it out, it might pay off. I wasn't able to tolerate 800mg of Tegretol, but I would try to up the dose again at a later date if I felt I had to. I think your body definitely gets used to these drugs, so later they might be able to be increased. The only drug I would be very reluctant to try again was Lamotrigine. Great as it was, the side effects were really ferocious at very low doses for me, so I suspect we'd never be a good match, but if you are managing to combine Trileptal with it already, Tegretol and Lamotrigine should be even better. According to my neurologist, Lamotrigine makes Tegretol work better, and it certainly- did in my case. It's all a question of pay off is the side effect worth the TN improvement?
dawndew said:
yes we are certainly kindred...I'm just sorry it is in a painful way :(
I have been on amitriptyline 50 mg for a long time for migraines and it does help if you have a headache for sure. I started out on Neurotin for the TN and I initially had good results but then I didn't and even on the max dose it didn't help me. Then I went to Lyrica which didn't help either. Then I went to Trileptal and that ended up being the one the help, 300 mg. but I always had that tooth sensitivity that lingered. Now I am back in TN pain land :( my doctor told me to double the Trileptal and I am not handling it well. I am sick to my stomach and seeing and hearing all kinds of things that just aren't there but still in pain. I called my doctor today but never heard back so I think I am just going to scale back to my old dose until I talk to her. I have never tried tegretol or Lamotrigine so maybe these are meds I can mention to my doctor. She is of the opinion that regular pain meds will not help even coupled with the meds that are suppose to be for nerve pain. But again this is the same doctor who doesn't call me back when I call with an issue :(
Thank you for the friend request. I so hope your new meds are the trick for you. You are due for a remission! And thank you for your advise
Woman with the electric teeth said:Hi Dawndew, no, I've never used amitriptyline, but Min uses it and she and a couple of other people have suggested it to me. It seems to be good for people who have teeth based problems. I have discussed it with my doctor but he seems to think it's only good for Type 2 TN (atypical). I'm seriously beginning to doubt his wisdom, however, and am going to suggest that if my new drug (Gabapentin) doesn't work for me that we try amitriptyline next. It may be that you don't have it at a critical dose yet, or you are not combining it with the right drugs? You can always put a post up asking for people who use it and find out what the satisfied users, as it were, combine it with.
All that said, I am really glad to find a kindred spirit in the 'never really goes away' front. This has been a very hard thing for me to deal with. I know exactly what you mean about wishing it was a legitimate tooth problem. I went through the tortures of the damned when I was first diagnosed, absolutely sure that I should go ahead and have my tooth root canalled, convinced I was being really foolish in not doing it. But the very fact that drugs make the pain better and worse as they are used and withdrawn proves it is not a tooth problem. Genuine toothache couldn't be masked for long by an anti-convulsants.
My electric shocks went as soon as I was on just 200mg of Carbamazepine, but even up as high as 800mg, and after that a combo of 600mg and 50mg of Lamotrigine, it never cleared the background 'sensitivity' pain. However, I can really recommend Lamotrigine to you (although it needs to be with Carbamazepine to get the best effect). It was great at removing mouth pain. I only got as far as 50mg, which is a ridiculously low dose, and my mouth felt almost normal. Certainly liveable with. The only trouble was terrible side effects. I had a six week migraine on it, literally, with severe nausea, and a whole host of other problems. I didn't realise it at the time, but now, off it, and with withdrawal just about past, I realise how much it had changed my personality and the really bizarre ways I was acting. The really scary thing about it was I didn't know. You know, like the truly crazy person who doesn't know he's crazy because - hell - he's crazy! Again though, I think that was just my bad luck. Most people seem to tolerate Lamotrigine well, and here's the irony, they actually use it to treat migraines!
Anyway, best of luck with your latest TN adventure. Let's hope it's a short one and you're back in remission soon. Let me know if you ever find a good drug or drug combo that works for your teeth. I'd really appreciate it. I'm going to friend you so we can stay in touch!
dawndew said:
Thank you so much for the reply Woman With The Electric Teeth (BTW awesome name!) Yes! I do get the shocks of pain in my top teeth, also in my ear and my cheek but my teeth always feel sensitive. But I get some background pain I guess I would call it along with the shocks. But it always starts with my teeth and they never feel right, even when I was in 'remission'. So I was curious when I saw that amitriptyline helps with the teeth issue. I have taken it for many years so maybe I need a bigger dose to feel the benefit.
I am thankful for that time I was in a good place pain wise. Now I feel like I am back at square one because of the flare up currently. I was desperately looking online for any help I can find and found this site. I was reading through all these discussions and I feel like I found people that actually get it. People in my life actually don't get it and I get 'she's crazy' looks all the time.
But the teeth thing I get. I would almost rather have something ACTUALLY be wrong with my teeth than it be a flare up. The dentist thought I was a lunatic when he said my teeth are fine. But I guess you understand that as well :(
Woman with the electric teeth said:Hi Dawndew, can I ask you, do you (or did you) get your electric shock pain/s in your teeth/mouth? You're really lucky to have had a remission period - oh what wouldn't I give for one of those. Every time mines dies back a little (a rare occurrence) I always think "Oh, am I having a remission?" But my hopes are always dashed. Damn it.
On the other hand, I bet it's really depressing when you've been in remission - and some lucky sods have them lasting years - and then the b*stard thing comes back. Much as I envy you, I don't envy how you must be feeling right now.
Do you find, as I do, that although the Tegretol deals with the shocks (and I had even better success with Lamotrigine but unfortunately had to give it up) that the pain just mutates into a 'sensitivity'? It doesn't really ever go away?
Hi,
I have TN 1 and have been through many different medications, but I in July I was referred to UCLA and the new neurologist prescribed two new medications that seem to be working. They are Namenda XR and Zanaflex; they are worth looking into.
Barbara, I take 10 mg of Baclofen broke up into 3 doses and use oral gel on my teeth that are hurting me as well as gums. I don’t use ice, don’t eat ice cream and eat just about everything luke warm. It’s not given me total relief either but, the side effects of the drug increase are worse for me than the diet adjustments. Good luck.
Hi jenster. ive used bonjela on my gums,and clove oil,clove oil is vile tho. No i dont use ice now,i have ice cream sometimes,as sometimes it helps weirdly enough,and then other times i cant tolerate it.i would like 1 day total relief in my teeth,but have been noticing that my face pain can ramp up a bit more when i chew,this is newish to me,i dont get it all the time,but have noticed more of a twinge................why cant it stop just for a day.
I forgot to mention that i tried duloxetine / cymbalta. 1 tablet gave me bad headache,and i had quite bad nausea sat and sun,sooooooo am not having them again.Crazy drugs. I may ask doc for amyltriptyline,but im on nortriptyline,does this matter. I t has been mentioned that amyltriptyline are good for the teeth issue. Would nortriptyline do the same........
Jenster said:
Barbara, I take 10 mg of Baclofen broke up into 3 doses and use oral gel on my teeth that are hurting me as well as gums. I don't use ice, don't eat ice cream and eat just about everything luke warm. It's not given me total relief either but, the side effects of the drug increase are worse for me than the diet adjustments. Good luck.
Hi Beth, wow, you seem to be ahead of the curve. I had to look both those up, and I see Namenda is an Alzheimer's drug, chiefly. I'm assuming you don't have Alzheimer's?, so I'm guessing you're one of the frontrunners getting it for "epilepsy and neuropathic pain". Cool. You're a guinea pig! Does it work well?
The Zanaflex is just a muscle relaxant, the inter-webs tells me, but I see a lot of people use these relaxants. This is definitely something to keep in the back of my mind if I run out of options. Thanks for telling me about these.
Beth said:
Hi,
I have TN 1 and have been through many different medications, but I in July I was referred to UCLA and the new neurologist prescribed two new medications that seem to be working. They are Namenda XR and Zanaflex; they are worth looking into.
WWet..you talked about Lamotrigine giving you migraines and it's supposed to treat migraines. Well ...Tegretol gave me symptoms of GN and IT, is supposed to treat THAT, as well.. So that's why I had to stop taking Teg... LOL
My doctor was baffled by the whole thing, every time he increased the dosage,, the worse my symptoms got!!!
Odd I know...but I thought it worth mentioning since you had a similar type of experience.... :-/
Hi Min, symptoms of GN??? Is that a misprint for TN or are my 'stupid drugs' making me dumber than usual?
Min said:
WWet…you talked about Lamotrigine giving you migraines and it’s supposed to treat migraines. Well …Tegretol gave me symptoms of GN and IT, is supposed to treat THAT, as well… So that’s why I had to stop taking Teg… LOL
My doctor was baffled by the whole thing, every time he increased the dosage, the worse my symptoms got!!!
Odd I know…but I thought it worth mentioning since you had a similar type of experience… :-/
GN --Geniculate neuralgia I kept having problems with swallowing and throat pain... GN also is characterized by ear pain as well. I have both now. But I didn't have either at the time. He was treating me for mouth pain and facial pain at the time. And every time he increased the dosage, I would get increased pain when swallowing. I am on Trileptal for the Geniculate neuralgia now and it works pretty well, I also take amitriptyline for the mouth pain and percocet for breakthru pain. I was taking nucynta, but I had to stop for awhile due to side effects from drug interactions, between trileptal, effexor, and nucynta. I am no longer on effexor as a result and am taking amitriptyline in place of effexor.
Ah, thank you. I've never heard of that version of TN, I am ashamed to say. But funny you should say that. Ever since I went on medication I've had trouble getting food down without something sticking (it happens once or twice a day) and with choking on spit in bed at night. When I mentioned this to my now-ex neurologist (just put a formal complaint in about her tonight - oh dear), she dismissed it as being caused by Tegretol, so it looks like it's known to do that. I get sore throats and sore mouths all the time. They feel normal, as in not part of my TN, but I assume they're side effects of good old Tegretol. What isn't!?
Min said:
GN --Geniculate neuralgia I kept having problems with swallowing and throat pain… GN also is characterized by ear pain as well. I have both now. But I didn’t have either at the time. He was treating me for mouth pain and facial pain at the time. And every time he increased the dosage, I would get increased pain when swallowing. I am on Trileptal for the Geniculate neuralgia now and it works pretty well, I also take amitriptyline for the mouth pain and percocet for breakthru pain. I was taking nucynta, but I had to stop for awhile due to side effects from drug interactions, between trileptal, effexor, and nucynta. I am no longer on effexor as a result and am taking amitriptyline in place of effexor.
Oh my goodness my dear, those are vivid hallucinations ! Yes when I upped my dose of trileptal I was seeing and hearing things. I was having the spider sightings too, which in my mind I was trying to tell myself they weren’t really there but the I couldn’t talk myself out of it for too long, which is crazy, I guess, to talk yourself out of crazy. I was seeing people too, not even people I know, which is weird. I was also hearing strange things, like scratching for no reason. Ugh! I also had a similar issue coming off of Neurontin, which is bizarre because I didn’t have the issue while on it. I guess I can deal with other side effects, but not that! My doctor just started me on Bacofen and I am still on my normal dose of trileptal . I am crossing my fingers for both of us.
Woman with the electric teeth said:
Hi Dawndew, we definitely are kindred. I think you're the first (or maybe second) person I've met on here who also had hallucinations. I suffered with them on both Tegretol and Lamotiringe, although they were different.
But let's talk about the Trileptal first. That's Oxcarbazepine, the sister drug to Carbamazepine (Tegretol). I know, all these different names are a pain, especially when you add in even more differences between the UK and US. Did they not try you on Carbamazepine first? That's the gold standard drug and nearly everybody is put on that first. I would certainly recommend it, especially if you combine it with Lamotrigine, although there is the 6 week migraine problem! But it did work for me, on the mouth pain, and I was desperate not to give it up, but it was killing me. But everybody's different. It might be perfect for you. Worth a shot if you don't get any further elsewhere.
Your doctor is right though about OTC opiates (painkillers), unfortunately. They don't work on TN pain. Unless you have some Type 2 TN. They do seem to work for some ATN sufferers. Certainly they do use them - lucky b*stards!
But back to hallucinations. Wow, great to meet someone else who had them. I had bad hallucinations for the first couple of months on Tegretol. Spiders. I saw them everywhere. Fortunately, I realised they were not real, but it wound me up something awful. I spent most evenings with my legs curled up on the sofa because I was frightened of them running over my feet, and I couldn't tell real from fake. (My house gets big brown hairy things on a regular basis that love to bolt across my carpet. Yuk.) My most spectacular 'vision' was once convincing myself that the (bird) stencil in my bedroom was a huge spider coming out the wallpaper. But I also once saw a sparrow in the fruit department of my local supermarket, and, inexplicably, two oranges on a park bench! I saw people standing all over the place that weren't there too. I had terrible trouble in low light conditions. It was dim the lights, out come the spiders.
On Lamotrigine I got them again, but they were completely different. So different it took me a few days to realise what was happening. They were much worse. They were spatial and perceptual. When I was just newly on it they were very bad. I once imagined my brain was in two halves, one orange, one teal (that was very important that, that it was teal, not just any old turquoise/jade colour!), and that they were split and out of synch, jutting out. I would just stand in the one spot, staring at these things inside my own head. Then I started getting spatial ones, where I would feel very tall, too tall for the room, or like I could reach out my hand and touch a cabinet five feet away. Every night I would lie in bed and think the same loop of 'film' over and over, but there would always be some fractured idea in it, like I had to line up the four corners of some image in my head or I couldn't go to sleep. Even asleep I'd be dreaming that same thing, over and over, so I didn't really know when I was asleep. Sometimes I was sure I dreamt it all night long because I used to wake thinking the same thing. Horrible.
Fortunately, they faded, but it wasn't till I came off Lamotrigine that I realised how much it had changed me. It definitely made me slightly crazy. I don't really remember the 6 weeks I was on it, and it wasn't just the pain that made me forget that time either.
Ah, the fun times of TN. Don't you just love it.......
P.S. Sorry, meant to reassure you - the hallucinations and nausea do die down with Tegretol but it can take a while (as in weeks, not days), especially when you go up a dose. I imagine it would be the same with Trileptal, so if you can sit it out, it might pay off. I wasn't able to tolerate 800mg of Tegretol, but I would try to up the dose again at a later date if I felt I had to. I think your body definitely gets used to these drugs, so later they might be able to be increased. The only drug I would be very reluctant to try again was Lamotrigine. Great as it was, the side effects were really ferocious at very low doses for me, so I suspect we'd never be a good match, but if you are managing to combine Trileptal with it already, Tegretol and Lamotrigine should be even better. According to my neurologist, Lamotrigine makes Tegretol work better, and it certainly- did in my case. It's all a question of pay off is the side effect worth the TN improvement?
dawndew said:yes we are certainly kindred...I'm just sorry it is in a painful way :(
I have been on amitriptyline 50 mg for a long time for migraines and it does help if you have a headache for sure. I started out on Neurotin for the TN and I initially had good results but then I didn't and even on the max dose it didn't help me. Then I went to Lyrica which didn't help either. Then I went to Trileptal and that ended up being the one the help, 300 mg. but I always had that tooth sensitivity that lingered. Now I am back in TN pain land :( my doctor told me to double the Trileptal and I am not handling it well. I am sick to my stomach and seeing and hearing all kinds of things that just aren't there but still in pain. I called my doctor today but never heard back so I think I am just going to scale back to my old dose until I talk to her. I have never tried tegretol or Lamotrigine so maybe these are meds I can mention to my doctor. She is of the opinion that regular pain meds will not help even coupled with the meds that are suppose to be for nerve pain. But again this is the same doctor who doesn't call me back when I call with an issue :(
Thank you for the friend request. I so hope your new meds are the trick for you. You are due for a remission! And thank you for your advise
Woman with the electric teeth said:Hi Dawndew, no, I've never used amitriptyline, but Min uses it and she and a couple of other people have suggested it to me. It seems to be good for people who have teeth based problems. I have discussed it with my doctor but he seems to think it's only good for Type 2 TN (atypical). I'm seriously beginning to doubt his wisdom, however, and am going to suggest that if my new drug (Gabapentin) doesn't work for me that we try amitriptyline next. It may be that you don't have it at a critical dose yet, or you are not combining it with the right drugs? You can always put a post up asking for people who use it and find out what the satisfied users, as it were, combine it with.
All that said, I am really glad to find a kindred spirit in the 'never really goes away' front. This has been a very hard thing for me to deal with. I know exactly what you mean about wishing it was a legitimate tooth problem. I went through the tortures of the damned when I was first diagnosed, absolutely sure that I should go ahead and have my tooth root canalled, convinced I was being really foolish in not doing it. But the very fact that drugs make the pain better and worse as they are used and withdrawn proves it is not a tooth problem. Genuine toothache couldn't be masked for long by an anti-convulsants.
My electric shocks went as soon as I was on just 200mg of Carbamazepine, but even up as high as 800mg, and after that a combo of 600mg and 50mg of Lamotrigine, it never cleared the background 'sensitivity' pain. However, I can really recommend Lamotrigine to you (although it needs to be with Carbamazepine to get the best effect). It was great at removing mouth pain. I only got as far as 50mg, which is a ridiculously low dose, and my mouth felt almost normal. Certainly liveable with. The only trouble was terrible side effects. I had a six week migraine on it, literally, with severe nausea, and a whole host of other problems. I didn't realise it at the time, but now, off it, and with withdrawal just about past, I realise how much it had changed my personality and the really bizarre ways I was acting. The really scary thing about it was I didn't know. You know, like the truly crazy person who doesn't know he's crazy because - hell - he's crazy! Again though, I think that was just my bad luck. Most people seem to tolerate Lamotrigine well, and here's the irony, they actually use it to treat migraines!
Anyway, best of luck with your latest TN adventure. Let's hope it's a short one and you're back in remission soon. Let me know if you ever find a good drug or drug combo that works for your teeth. I'd really appreciate it. I'm going to friend you so we can stay in touch!
dawndew said:
Thank you so much for the reply Woman With The Electric Teeth (BTW awesome name!) Yes! I do get the shocks of pain in my top teeth, also in my ear and my cheek but my teeth always feel sensitive. But I get some background pain I guess I would call it along with the shocks. But it always starts with my teeth and they never feel right, even when I was in 'remission'. So I was curious when I saw that amitriptyline helps with the teeth issue. I have taken it for many years so maybe I need a bigger dose to feel the benefit.
I am thankful for that time I was in a good place pain wise. Now I feel like I am back at square one because of the flare up currently. I was desperately looking online for any help I can find and found this site. I was reading through all these discussions and I feel like I found people that actually get it. People in my life actually don't get it and I get 'she's crazy' looks all the time.
But the teeth thing I get. I would almost rather have something ACTUALLY be wrong with my teeth than it be a flare up. The dentist thought I was a lunatic when he said my teeth are fine. But I guess you understand that as well :(
Woman with the electric teeth said:Hi Dawndew, can I ask you, do you (or did you) get your electric shock pain/s in your teeth/mouth? You're really lucky to have had a remission period - oh what wouldn't I give for one of those. Every time mines dies back a little (a rare occurrence) I always think "Oh, am I having a remission?" But my hopes are always dashed. Damn it.
On the other hand, I bet it's really depressing when you've been in remission - and some lucky sods have them lasting years - and then the b*stard thing comes back. Much as I envy you, I don't envy how you must be feeling right now.
Do you find, as I do, that although the Tegretol deals with the shocks (and I had even better success with Lamotrigine but unfortunately had to give it up) that the pain just mutates into a 'sensitivity'? It doesn't really ever go away?
oh i see. oh gawd,i had severe throat last week,got anti biotics. But had to go to an ear,nose,throat specialist cos i kept thinking/feeling i had something caught in my throat. i was given omerprazole for acid reflux,but am also finding lots of people who have our pain do go to an ENT. Isnt it funny how we all go down the same path.
Min said:
GN --Geniculate neuralgia I kept having problems with swallowing and throat pain... GN also is characterized by ear pain as well. I have both now. But I didn't have either at the time. He was treating me for mouth pain and facial pain at the time. And every time he increased the dosage, I would get increased pain when swallowing. I am on Trileptal for the Geniculate neuralgia now and it works pretty well, I also take amitriptyline for the mouth pain and percocet for breakthru pain. I was taking nucynta, but I had to stop for awhile due to side effects from drug interactions, between trileptal, effexor, and nucynta. I am no longer on effexor as a result and am taking amitriptyline in place of effexor.
Eeyup.. I wondered for awhile if It was reflux or if it is true GN or a reaction from Trileptal... But I have ear pain sooo,tis likely I would have throat pain... but after reading a few things on here I am starting to wonder if the Trileptal is making me have swallowing issues. Who knows. but I don't want to go off of it to find out!!!!! Ear pain would kill ME....sooo I just have to deal with it swallow slowly... Plus I have the numb throat on the right side. But I have recently figured out that if I concentrate on the left side....swallowing becomes easier and doesn't hurt as much!!!! MLAH!!!!!!
Come to think of it...I didn't have the throat issues until I started taking the Trileptal!!!!!! AHHHHHHHHH
You're darned if you do....and you're darned if you DON'T!!
And I've been to my ENT many, many times..mostly thinking there was something wrong with my ears and also for my sinus'. I had sinus surgery. We've all been there.....it seems.
Sinus? Seriously? Now I'm worried, because these migraines I've been having were all sinus-centric, as in they all had pain in a cluster from sinus to brow and they always felt like sinus headaches - that's how I described them to my ex-neurologist, in fact. When I got up in the mornings my sinuses would click and then do it intermittently all day. In fact even the nausea felt sinus based, like water had gone up my nose or something. It's now day fourteen of being off Lamotrigine but the migraines are still there, albeit not as frequently, but that sinus 'pain' is ever-present, hovering. I've just been hoping and praying it's just proving slow to leave my system.
I have an anxiety (one of my many million) that these headaches are actually Tegretol-based and they only flared up on Lamotrigine because Lamotrigine makes Tegretol work better, so I'm watching them anxiously. I don't know what I'll do if this is a late-developing side effect because I don't know how I could come off Tegretol.
Please reassure me that sinus pains are not normal with type 1 TN. I don't even have TN in that part of my face. Mind you, I don't know why I'm asking you that, since if it is the Tegretol would that make any difference? Damn.
Min said:
Eeyup… I wondered for awhile if It was reflux or if it is true GN or a reaction from Trileptal… But I have ear pain sooo,tis likely I would have throat pain… but after reading a few things on here I am starting to wonder if the Trileptal is making me have swallowing issues. Who knows. but I don’t want to go off of it to find out!!! Ear pain would kill ME…sooo I just have to deal with it swallow slowly… Plus I have the numb throat on the right side. But I have recently figured out that if I concentrate on the left side…swallowing becomes easier and doesn’t hurt as much!!! MLAH!!!
Come to think of it…I didn’t have the throat issues until I started taking the Trileptal!!! AHHHHHHHHH
You’re darned if you do…and you’re darned if you DON’T!!
And I’ve been to my ENT many, many times…mostly thinking there was something wrong with my ears and also for my sinus’. I had sinus surgery. We’ve all been there…it seems.