Is this TN?

[Anjie]

Hi all, this may seem like a strange question but here goes. I was diagnosed with TN a few months ago and prescribed Carbamazepine but as my symptoms had subsided when I had my initial appointment with a neurologist, I was told not to take it unless I had another flare up. To be fair I was in no hurry to take it after I had read the side effects. Prior to the diagnosis I had 2 teeth removed due to what my dentist diagnosed as fractured and rotted roots, I disagreed as my regular dentist had found no issues but due to the amount of pain I was in I agreed to have an upper molar removed from each side. I have also had a deep clean of my mouth. I have TMJ on one side and since the extraction have continued to have pain. I cannot touch my lip on that side or the area around it even gently without causing a "jumping" pain and am still unable to chew plus talking seems to aggravate it although I can brush and floss without incident. It is almost 4 months since the extractions and I do not appear to have healed as well on my TMJ side. I assume due to the grinding although I do wear my soft splint religiously.

The pain is not unbearable unless I touch my face or lip when it intensiifes briefly but I am wondering whether this is TN and I should start the meds or whether it is TMJ or something else. At present I am coping with amytriptiline (probably spelt that wrong lol) and vodka on an evening. I think I am just scared of starting new meds but the jumping pain has been constant for the past 5 months and my understanding was that TN flared up for a while and then subsided so I am confused as to whether my pain is due to TN as even when I don't touch the "hot spot" areas have pain at a constant level in my teeth and gums and sometimes my get a tingling sensation in my tongue on my TMJ side. My GP is supportive but has no idea and I have 5 months before my next visit with my Neurologist who did say he would discharge me if I had not suffered any further flare ups. Any suggestions as to what I should do?

[Woman_with_the_elect]

HI Anjie, I'm loath to do diagnosis; that's really a doctor's job, but yes, I'd have to say that very much sounds like TN. Is your "jumping pain" like an electric shock?

[Anjie]

Woman with the electric teeth said:

HI Anjie, I'm loath to do diagnosis; that's really a doctor's job, but yes, I'd have to say that very much sounds like TN. Is your "jumping pain" like an electric shock?

Hi yes the jumping pain feels like a sharp, intense nerve pain, like being jabbed with something sharp and can be in my lip and sometimes in that side of my lower face too so that I can't bear to wash it. I was diagnosed as having TN after seeing a neurologist (physical exam) but by the time of my appointment the excruciating pain I had had for the previous 7 weeks had subsided. He' prescribed the med and said take it if you have a flare up but I don't know what a flare up would feel like. I have not been pain free since April and have a constant pain in my teeth, gums, jaw on one side which feels sort of like I am tearing skin when I talk or move my mouth too much and is just very sore, feels raw and sensitive. My Gp says take the meds and see what happens but I have read some horror stories from other sufferers about the side effects that I have backed off taking them. I am managing without by having mainly liquids and being conscious of how I move my jaw but the constant nagging pain is very wearing and I am in a constant anxiety of the nightmare pain returning. TN is a new condition to me and so I am just confused about what I am feeling I guess cos it feels like my teeth and gums are the culprit but I know this isn't the case as as even though I had the extractions, I still get the same pain in the extraction site

[Woman_with_the_elect]

Hi Anjie. If you are having the 'shocks' then you are having TN pains. The fact that things like touching your lip triggers them is very obvious. Also, you shouldn't be reduced to liquid foods - that's no quality of life, and the fear and anxiety makes the whole thing worse. As someone who suffers with the side effects of meds to the full (I had a 6 week migraine recently from meds - not the one you have, so relax!) I can tell you three things that might reassure you:

1) NOTHING the meds do to you is as bad as the TN pains. It's Tegretol you've got, right? Tegretol is Carbamazepine; that's the gold standard drug they put everyone on first because it's the most effective drug with the most manageable side effects. The worst side effects are likely to be drowsiness - it makes you sleepy when you first take it. And unsteady gait - you feel drunk and lurch about. That's more funny for others to watch than truly unpleasant. You may also get some nausea - but that's usually all you get. It doesn't usually cause vomiting, so you can relax there.

2. Second most important thing to remember. You can stop meds. Anytime. This is not a death sentence. You take them, and if you don't like them, stop them. How will you be worse off?

3. The side effects stop. That's the great thing about Carbamazepine, the side effects settle down till you feel virtually normal. I've been on the drugs quite a few months now and all I really get is some nausea if I let myself get too hungry, some unsteadiness on my feet, especially if I've been lying down, and stupidity. That's the worst one for me - not being able to remember words. But it's not a horrible pain or sickness, just annoying. But I had all the side effects in spades when I first started so I am living proof that they do settle down if you just persevere. And I no longer get the electric shocks. My mouth's not right yet, but we're working on it.

Yeah, there's loads of other side effects, like easy bruising (still do that one, but hey - how often do you bruise yourself?), but most of them are teeny flea-bites. The side effects warnings that come with the packet are truly alarming, but as my doctor said, "They list all that to cover their asses in case anyone sues". They won't all happen to you!

If you decide to take them - and I think you should because you are suffering unnecessarily - feel free to come and ask me anything if you get a weird result. I had all kinds of strange things, like burning pee (honestly) and hallucinations (they were fun), but they all passed. The secret with the drugs is to not take too high a dose too quickly. You have to ease into them slowly, or it makes the side effects worse. Again, ask me anything you want. I'm queen of handling shitty side effects!

[Anjie]

Woman with the electric teeth said:

Hi Anjie. If you are having the 'shocks' then you are having TN pains. The fact that things like touching your lip triggers them is very obvious. Also, you shouldn't be reduced to liquid foods - that's no quality of life, and the fear and anxiety makes the whole thing worse. As someone who suffers with the side effects of meds to the full (I had a 6 week migraine recently from meds - not the one you have, so relax!) I can tell you three things that might reassure you:

1) NOTHING the meds do to you is as bad as the TN pains. It's Tegretol you've got, right? Tegretol is Carbamazepine; that's the gold standard drug they put everyone on first because it's the most effective drug with the most manageable side effects. The worst side effects are likely to be drowsiness - it makes you sleepy when you first take it. And unsteady gait - you feel drunk and lurch about. That's more funny for others to watch than truly unpleasant. You may also get some nausea - but that's usually all you get. It doesn't usually cause vomiting, so you can relax there.

2. Second most important thing to remember. You can stop meds. Anytime. This is not a death sentence. You take them, and if you don't like them, stop them. How will you be worse off?

3. The side effects stop. That's the great thing about Carbamazepine, the side effects settle down till you feel virtually normal. I've been on the drugs quite a few months now and all I really get is some nausea if I let myself get too hungry, some unsteadiness on my feet, especially if I've been lying down, and stupidity. That's the worst one for me - not being able to remember words. But it's not a horrible pain or sickness, just annoying. But I had all the side effects in spades when I first started so I am living proof that they do settle down if you just persevere. And I no longer get the electric shocks. My mouth's not right yet, but we're working on it.

Yeah, there's loads of other side effects, like easy bruising (still do that one, but hey - how often do you bruise yourself?), but most of them are teeny flea-bites. The side effects warnings that come with the packet are truly alarming, but as my doctor said, "They list all that to cover their asses in case anyone sues". They won't all happen to you!

If you decide to take them - and I think you should because you are suffering unnecessarily - feel free to come and ask me anything if you get a weird result. I had all kinds of strange things, like burning pee (honestly) and hallucinations (they were fun), but they all passed. The secret with the drugs is to not take too high a dose too quickly. You have to ease into them slowly, or it makes the side effects worse. Again, ask me anything you want. I'm queen of handling shitty side effects!

Thank you, it's reassuring to hear from someone who is taking the meds already. I can;t recall the dose but think it was one tablet (prob 100mg) a night for seven nights, then one at night and one on morning for the next week, then two at night one on a morning the third week and then 2 am and 2 pm after that. My job is quite demanding and I have to be on the ball as have to attend court etc so I am slightly concerned that the side effects may hamper me but I could maybe take a few days off to give them a try. Can I ask if you know how they interact with alcohol? Would hate to go out, have a drink and then cause some hideous reaction. It would be nice not to have so much pain though. My son gets married in November and I have been worrying about the day as I know I won't be able to eat and if the jumpy pain is there I won't be able to wear make up or smile for the photos. Silly how such small things can cause such worry isn't it lol Can I ask your name, hate to call you woman with the electric teeth all of the time :)

[Anjie]

Anjie said:

Woman with the electric teeth said:

Hi Anjie. If you are having the 'shocks' then you are having TN pains. The fact that things like touching your lip triggers them is very obvious. Also, you shouldn't be reduced to liquid foods - that's no quality of life, and the fear and anxiety makes the whole thing worse. As someone who suffers with the side effects of meds to the full (I had a 6 week migraine recently from meds - not the one you have, so relax!) I can tell you three things that might reassure you:

1) NOTHING the meds do to you is as bad as the TN pains. It's Tegretol you've got, right? Tegretol is Carbamazepine; that's the gold standard drug they put everyone on first because it's the most effective drug with the most manageable side effects. The worst side effects are likely to be drowsiness - it makes you sleepy when you first take it. And unsteady gait - you feel drunk and lurch about. That's more funny for others to watch than truly unpleasant. You may also get some nausea - but that's usually all you get. It doesn't usually cause vomiting, so you can relax there.

2. Second most important thing to remember. You can stop meds. Anytime. This is not a death sentence. You take them, and if you don't like them, stop them. How will you be worse off?

3. The side effects stop. That's the great thing about Carbamazepine, the side effects settle down till you feel virtually normal. I've been on the drugs quite a few months now and all I really get is some nausea if I let myself get too hungry, some unsteadiness on my feet, especially if I've been lying down, and stupidity. That's the worst one for me - not being able to remember words. But it's not a horrible pain or sickness, just annoying. But I had all the side effects in spades when I first started so I am living proof that they do settle down if you just persevere. And I no longer get the electric shocks. My mouth's not right yet, but we're working on it.

Yeah, there's loads of other side effects, like easy bruising (still do that one, but hey - how often do you bruise yourself?), but most of them are teeny flea-bites. The side effects warnings that come with the packet are truly alarming, but as my doctor said, "They list all that to cover their asses in case anyone sues". They won't all happen to you!

If you decide to take them - and I think you should because you are suffering unnecessarily - feel free to come and ask me anything if you get a weird result. I had all kinds of strange things, like burning pee (honestly) and hallucinations (they were fun), but they all passed. The secret with the drugs is to not take too high a dose too quickly. You have to ease into them slowly, or it makes the side effects worse. Again, ask me anything you want. I'm queen of handling shitty side effects!

Thank you, it's reassuring to hear from someone who is taking the meds already. I can;t recall the dose but think it was one tablet (prob 100mg) a night for seven nights, then one at night and one on morning for the next week, then two at night one on a morning the third week and then 2 am and 2 pm after that. My job is quite demanding and I have to be on the ball as have to attend court etc so I am slightly concerned that the side effects may hamper me but I could maybe take a few days off to give them a try. Can I ask if you know how they interact with alcohol? Would hate to go out, have a drink and then cause some hideous reaction. It would be nice not to have so much pain though. My son gets married in November and I have been worrying about the day as I know I won't be able to eat and if the jumpy pain is there I won't be able to wear make up or smile for the photos. Silly how such small things can cause such worry isn't it lol Can I ask your name, hate to call you woman with the electric teeth all of the time :)

[Woman_with_the_elect]

Hi Anjie. No problem. Yeah, that dose timetable they've put you on is fine. When I first started I was increasing the dose every fortnight, not every week, and I would recommend that. But you may well a) be tougher than I am and b) have a body that can take the meds better. Incidentally, this might cheer you up, I found the electric shocks stopped at 200mg - and it was GREAT! So you may not have to wait until you hit top dose. But don't worry if nothing happens for the first 5 - 7 days. It takes a while for the meds to build up in your system, so don't panic if they don't seem to be working. Give them at least a week, and it may take 200 or 300mg to be optimal for you. Unfortunately, everyone is different. That's one of the fun things with this complaint!

Alcohol - not a good idea, except you do get drunk much quicker, so that's an upside! Tegretol intensifies the effects of alcohol. I once had a chocolate pudding with brandy in it and felt as if I had drunk two glasses of wine, so 1 tablespoon of alcohol = two glasses on Tegretol! I didn't notice any unpleasant side effects though, I just got very drunk. On the other hand, the most I've ever drunk is one very small glass of wine, so I'm not swearing to what happens after that. It makes us really cheap dates! I'm more or less teetotal so I would say you probably won't react that bad since you do drink, but just go very slow till you see how your body reacts to it. You don't want to be puking up or passing out in court; that won't make you look very reliable!

And you should be well on your way to shock free for your son's wedding. I still have problems with eating, and I'm on 600mg of Tegretol, but you could go higher than that, if it works for you. Unfortunately, it was too toxic for me at 800mg (bad nausea and very unsteady, but it might have got better if I'd persevered, but I can't stand feeling sick so I abandoned it after a couple of weeks with no improvement and dropped back down to 600mg). I found Tegretol was great with Lamotrigine. My neurologist said it makes Tegretol work better, and it really did. My mouth felt almost normal, but I had a constant crippling migraine with Lamotrigine. However, that's a rare(ish) response to it; most people seem to tolerate it well – certainly I've not found anyone else on here who's ever had migraines with it; a lot of people use it. I would certainly recommend it if, like me, you have residual pain that Tegretol isn't clearing up. The important thing is Tegretol should get rid of the shocks for you and everything is clearer once you get them out of your life. After that you can make a better decision about how much you want to pursue less pain against more side effects. Right now I'm on a holiday from drug testing, but in a week or so I will be combining mine with Gabapentin to see if I have any more luck with that. I would dearly love to be able to eat on the right side of my mouth, and I have a fear of winter – my pain is much worse in winter!

Anjie said:

Woman with the electric teeth said:

Hi Anjie. If you are having the ‘shocks’ then you are having TN pains. The fact that things like touching your lip triggers them is very obvious. Also, you shouldn’t be reduced to liquid foods - that’s no quality of life, and the fear and anxiety makes the whole thing worse. As someone who suffers with the side effects of meds to the full (I had a 6 week migraine recently from meds - not the one you have, so relax!) I can tell you three things that might reassure you:

1) NOTHING the meds do to you is as bad as the TN pains. It’s Tegretol you’ve got, right? Tegretol is Carbamazepine; that’s the gold standard drug they put everyone on first because it’s the most effective drug with the most manageable side effects. The worst side effects are likely to be drowsiness - it makes you sleepy when you first take it. And unsteady gait - you feel drunk and lurch about. That’s more funny for others to watch than truly unpleasant. You may also get some nausea - but that’s usually all you get. It doesn’t usually cause vomiting, so you can relax there.

2. Second most important thing to remember. You can stop meds. Anytime. This is not a death sentence. You take them, and if you don’t like them, stop them. How will you be worse off?

3. The side effects stop. That’s the great thing about Carbamazepine, the side effects settle down till you feel virtually normal. I’ve been on the drugs quite a few months now and all I really get is some nausea if I let myself get too hungry, some unsteadiness on my feet, especially if I’ve been lying down, and stupidity. That’s the worst one for me - not being able to remember words. But it’s not a horrible pain or sickness, just annoying. But I had all the side effects in spades when I first started so I am living proof that they do settle down if you just persevere. And I no longer get the electric shocks. My mouth’s not right yet, but we’re working on it.

Yeah, there’s loads of other side effects, like easy bruising (still do that one, but hey - how often do you bruise yourself?), but most of them are teeny flea-bites. The side effects warnings that come with the packet are truly alarming, but as my doctor said, “They list all that to cover their asses in case anyone sues”. They won’t all happen to you!

If you decide to take them - and I think you should because you are suffering unnecessarily - feel free to come and ask me anything if you get a weird result. I had all kinds of strange things, like burning pee (honestly) and hallucinations (they were fun), but they all passed. The secret with the drugs is to not take too high a dose too quickly. You have to ease into them slowly, or it makes the side effects worse. Again, ask me anything you want. I’m queen of handling shitty side effects!

Thank you, it’s reassuring to hear from someone who is taking the meds already. I can;t recall the dose but think it was one tablet (prob 100mg) a night for seven nights, then one at night and one on morning for the next week, then two at night one on a morning the third week and then 2 am and 2 pm after that. My job is quite demanding and I have to be on the ball as have to attend court etc so I am slightly concerned that the side effects may hamper me but I could maybe take a few days off to give them a try. Can I ask if you know how they interact with alcohol? Would hate to go out, have a drink and then cause some hideous reaction. It would be nice not to have so much pain though. My son gets married in November and I have been worrying about the day as I know I won’t be able to eat and if the jumpy pain is there I won’t be able to wear make up or smile for the photos. Silly how such small things can cause such worry isn’t it lol Can I ask your name, hate to call you woman with the electric teeth all of the time

[Woman_with_the_elect]

Sorry, forgot to say, my name is Chancery!

Woman with the electric teeth said:

Hi Anjie. No problem. Yeah, that dose timetable they’ve put you on is fine. When I first started I was increasing the dose every fortnight, not every week, and I would recommend that. But you may well a) be tougher than I am and b) have a body that can take the meds better. Incidentally, this might cheer you up, I found the electric shocks stopped at 200mg - and it was GREAT! So you may not have to wait until you hit top dose. But don’t worry if nothing happens for the first 5 - 7 days. It takes a while for the meds to build up in your system, so don’t panic if they don’t seem to be working. Give them at least a week, and it may take 200 or 300mg to be optimal for you. Unfortunately, everyone is different. That’s one of the fun things with this complaint!

Alcohol - not a good idea, except you do get drunk much quicker, so that’s an upside! Tegretol intensifies the effects of alcohol. I once had a chocolate pudding with brandy in it and felt as if I had drunk two glasses of wine, so 1 tablespoon of alcohol = two glasses on Tegretol! I didn’t notice any unpleasant side effects though, I just got very drunk. On the other hand, the most I’ve ever drunk is one very small glass of wine, so I’m not swearing to what happens after that. It makes us really cheap dates! I’m more or less teetotal so I would say you probably won’t react that bad since you do drink, but just go very slow till you see how your body reacts to it. You don’t want to be puking up or passing out in court; that won’t make you look very reliable!

And you should be well on your way to shock free for your son’s wedding. I still have problems with eating, and I’m on 600mg of Tegretol, but you could go higher than that, if it works for you. Unfortunately, it was too toxic for me at 800mg (bad nausea and very unsteady, but it might have got better if I’d persevered, but I can’t stand feeling sick so I abandoned it after a couple of weeks with no improvement and dropped back down to 600mg). I found Tegretol was great with Lamotrigine. My neurologist said it makes Tegretol work better, and it really did. My mouth felt almost normal, but I had a constant crippling migraine with Lamotrigine. However, that’s a rare(ish) response to it; most people seem to tolerate it well – certainly I’ve not found anyone else on here who’s ever had migraines with it; a lot of people use it. I would certainly recommend it if, like me, you have residual pain that Tegretol isn’t clearing up. The important thing is Tegretol should get rid of the shocks for you and everything is clearer once you get them out of your life. After that you can make a better decision about how much you want to pursue less pain against more side effects. Right now I’m on a holiday from drug testing, but in a week or so I will be combining mine with Gabapentin to see if I have any more luck with that. I would dearly love to be able to eat on the right side of my mouth, and I have a fear of winter – my pain is much worse in winter!
Anjie said:

Woman with the electric teeth said:

Hi Anjie. If you are having the ‘shocks’ then you are having TN pains. The fact that things like touching your lip triggers them is very obvious. Also, you shouldn’t be reduced to liquid foods - that’s no quality of life, and the fear and anxiety makes the whole thing worse. As someone who suffers with the side effects of meds to the full (I had a 6 week migraine recently from meds - not the one you have, so relax!) I can tell you three things that might reassure you:

1) NOTHING the meds do to you is as bad as the TN pains. It’s Tegretol you’ve got, right? Tegretol is Carbamazepine; that’s the gold standard drug they put everyone on first because it’s the most effective drug with the most manageable side effects. The worst side effects are likely to be drowsiness - it makes you sleepy when you first take it. And unsteady gait - you feel drunk and lurch about. That’s more funny for others to watch than truly unpleasant. You may also get some nausea - but that’s usually all you get. It doesn’t usually cause vomiting, so you can relax there.

2. Second most important thing to remember. You can stop meds. Anytime. This is not a death sentence. You take them, and if you don’t like them, stop them. How will you be worse off?

3. The side effects stop. That’s the great thing about Carbamazepine, the side effects settle down till you feel virtually normal. I’ve been on the drugs quite a few months now and all I really get is some nausea if I let myself get too hungry, some unsteadiness on my feet, especially if I’ve been lying down, and stupidity. That’s the worst one for me - not being able to remember words. But it’s not a horrible pain or sickness, just annoying. But I had all the side effects in spades when I first started so I am living proof that they do settle down if you just persevere. And I no longer get the electric shocks. My mouth’s not right yet, but we’re working on it.

Yeah, there’s loads of other side effects, like easy bruising (still do that one, but hey - how often do you bruise yourself?), but most of them are teeny flea-bites. The side effects warnings that come with the packet are truly alarming, but as my doctor said, “They list all that to cover their asses in case anyone sues”. They won’t all happen to you!

If you decide to take them - and I think you should because you are suffering unnecessarily - feel free to come and ask me anything if you get a weird result. I had all kinds of strange things, like burning pee (honestly) and hallucinations (they were fun), but they all passed. The secret with the drugs is to not take too high a dose too quickly. You have to ease into them slowly, or it makes the side effects worse. Again, ask me anything you want. I’m queen of handling shitty side effects!

Thank you, it’s reassuring to hear from someone who is taking the meds already. I can;t recall the dose but think it was one tablet (prob 100mg) a night for seven nights, then one at night and one on morning for the next week, then two at night one on a morning the third week and then 2 am and 2 pm after that. My job is quite demanding and I have to be on the ball as have to attend court etc so I am slightly concerned that the side effects may hamper me but I could maybe take a few days off to give them a try. Can I ask if you know how they interact with alcohol? Would hate to go out, have a drink and then cause some hideous reaction. It would be nice not to have so much pain though. My son gets married in November and I have been worrying about the day as I know I won’t be able to eat and if the jumpy pain is there I won’t be able to wear make up or smile for the photos. Silly how such small things can cause such worry isn’t it lol Can I ask your name, hate to call you woman with the electric teeth all of the time

[Anjie]

Woman with the electric teeth said:

Hi Anjie. No problem. Yeah, that dose timetable they've put you on is fine. When I first started I was increasing the dose every fortnight, not every week, and I would recommend that. But you may well a) be tougher than I am and b) have a body that can take the meds better. Incidentally, this might cheer you up, I found the electric shocks stopped at 200mg - and it was GREAT! So you may not have to wait until you hit top dose. But don't worry if nothing happens for the first 5 - 7 days. It takes a while for the meds to build up in your system, so don't panic if they don't seem to be working. Give them at least a week, and it may take 200 or 300mg to be optimal for you. Unfortunately, everyone is different. That's one of the fun things with this complaint!

Alcohol - not a good idea, except you do get drunk much quicker, so that's an upside! Tegretol intensifies the effects of alcohol. I once had a chocolate pudding with brandy in it and felt as if I had drunk two glasses of wine, so 1 tablespoon of alcohol = two glasses on Tegretol! I didn't notice any unpleasant side effects though, I just got very drunk. On the other hand, the most I've ever drunk is one very small glass of wine, so I'm not swearing to what happens after that. It makes us really cheap dates! I'm more or less teetotal so I would say you probably won't react that bad since you do drink, but just go very slow till you see how your body reacts to it. You don't want to be puking up or passing out in court; that won't make you look very reliable!

And you should be well on your way to shock free for your son's wedding. I still have problems with eating, and I'm on 600mg of Tegretol, but you could go higher than that, if it works for you. Unfortunately, it was too toxic for me at 800mg (bad nausea and very unsteady, but it might have got better if I'd persevered, but I can't stand feeling sick so I abandoned it after a couple of weeks with no improvement and dropped back down to 600mg). I found Tegretol was great with Lamotrigine. My neurologist said it makes Tegretol work better, and it really did. My mouth felt almost normal, but I had a constant crippling migraine with Lamotrigine. However, that's a rare(ish) response to it; most people seem to tolerate it well – certainly I've not found anyone else on here who's ever had migraines with it; a lot of people use it. I would certainly recommend it if, like me, you have residual pain that Tegretol isn't clearing up. The important thing is Tegretol should get rid of the shocks for you and everything is clearer once you get them out of your life. After that you can make a better decision about how much you want to pursue less pain against more side effects. Right now I'm on a holiday from drug testing, but in a week or so I will be combining mine with Gabapentin to see if I have any more luck with that. I would dearly love to be able to eat on the right side of my mouth, and I have a fear of winter – my pain is much worse in winter!
Anjie said:

Woman with the electric teeth said:

Hi Anjie. If you are having the 'shocks' then you are having TN pains. The fact that things like touching your lip triggers them is very obvious. Also, you shouldn't be reduced to liquid foods - that's no quality of life, and the fear and anxiety makes the whole thing worse. As someone who suffers with the side effects of meds to the full (I had a 6 week migraine recently from meds - not the one you have, so relax!) I can tell you three things that might reassure you:

1) NOTHING the meds do to you is as bad as the TN pains. It's Tegretol you've got, right? Tegretol is Carbamazepine; that's the gold standard drug they put everyone on first because it's the most effective drug with the most manageable side effects. The worst side effects are likely to be drowsiness - it makes you sleepy when you first take it. And unsteady gait - you feel drunk and lurch about. That's more funny for others to watch than truly unpleasant. You may also get some nausea - but that's usually all you get. It doesn't usually cause vomiting, so you can relax there.

2. Second most important thing to remember. You can stop meds. Anytime. This is not a death sentence. You take them, and if you don't like them, stop them. How will you be worse off?

3. The side effects stop. That's the great thing about Carbamazepine, the side effects settle down till you feel virtually normal. I've been on the drugs quite a few months now and all I really get is some nausea if I let myself get too hungry, some unsteadiness on my feet, especially if I've been lying down, and stupidity. That's the worst one for me - not being able to remember words. But it's not a horrible pain or sickness, just annoying. But I had all the side effects in spades when I first started so I am living proof that they do settle down if you just persevere. And I no longer get the electric shocks. My mouth's not right yet, but we're working on it.

Yeah, there's loads of other side effects, like easy bruising (still do that one, but hey - how often do you bruise yourself?), but most of them are teeny flea-bites. The side effects warnings that come with the packet are truly alarming, but as my doctor said, "They list all that to cover their asses in case anyone sues". They won't all happen to you!

If you decide to take them - and I think you should because you are suffering unnecessarily - feel free to come and ask me anything if you get a weird result. I had all kinds of strange things, like burning pee (honestly) and hallucinations (they were fun), but they all passed. The secret with the drugs is to not take too high a dose too quickly. You have to ease into them slowly, or it makes the side effects worse. Again, ask me anything you want. I'm queen of handling shitty side effects!

Thank you, it's reassuring to hear from someone who is taking the meds already. I can;t recall the dose but think it was one tablet (prob 100mg) a night for seven nights, then one at night and one on morning for the next week, then two at night one on a morning the third week and then 2 am and 2 pm after that. My job is quite demanding and I have to be on the ball as have to attend court etc so I am slightly concerned that the side effects may hamper me but I could maybe take a few days off to give them a try. Can I ask if you know how they interact with alcohol? Would hate to go out, have a drink and then cause some hideous reaction. It would be nice not to have so much pain though. My son gets married in November and I have been worrying about the day as I know I won't be able to eat and if the jumpy pain is there I won't be able to wear make up or smile for the photos. Silly how such small things can cause such worry isn't it lol Can I ask your name, hate to call you woman with the electric teeth all of the time :)

upping them every 2 weeks sounds like a good option, more time to let myself get adjusted to them. To be honest if I wasn't in so much discomfort I wouldn't drink alcohol as often but I find alcohol on an evening followed by an amytriptiline means that I fall asleep as soon as I'm in bed and don;t feel anything until i get up. Strange thing is I don't seem to get as much pain until I'm up walking about, When it was at its peak, even the vibration from walking would cause shocks and that was no fun at all. I hadn't even thought about the effect of winter but I can imagine the cold and wind could be a trigger for me, Any tips for surviving that apart from wrapping my head in bubble wrap lol

[Woman_with_the_elect]

The one downside to upping every two weeks I should mention is that every time you up a dose you have to go through the same side effects again. So, in my case, for example, I had three or four days of burning pee every time I upped a dose. And my skin tasting of salt, and, and.. You get the picture. I honestly don't know if you might not notice that if you up each week. Everyone recommends the weekly thing, but I reckon that's because they're doctors who don't actually have to deal with the damn side effects! So I'm sticking to fortnightly uppings, thanks, but just felt I should tell you. You have options!

And it's not odd at all to not get pain during the night, or to not notice it till you are up and about. Mine's never started till I took my mouthguard out in the morning. I could actually judge how bad a day would be by how sore that was. I used to love going to bed because it was respite. It's one of the oddities of the disease that it doesn't hurt when you're asleep. And I get the vibration thing completely. It took me a while to realise that it hurt me to walk and it was the impact of my foot hitting the ground. The wind is a terrible trigger. Easily, hands down my worst. Perhaps only going outdoors to in, and vice versa, gives it competition. I used to wrap my face in a scarf but it was suffocating and of limited success. Everybody here does it though. I'm considering a cyclist's mask thingy this year. Ok, I'll look like a mugger but who cares? But hey - you'll be shock free by then, and much braver! No worries.

P.S. Just a tip about posting on here. If you make sure your cursor is above where it says "The woman with the electric teeth says..." before you answer it will place your answer above mine and it will be much easier to find. At the moment I'm having to trawl through all the text to find your reply!

Anjie said:

Woman with the electric teeth said:

Hi Anjie. No problem. Yeah, that dose timetable they’ve put you on is fine. When I first started I was increasing the dose every fortnight, not every week, and I would recommend that. But you may well a) be tougher than I am and b) have a body that can take the meds better. Incidentally, this might cheer you up, I found the electric shocks stopped at 200mg - and it was GREAT! So you may not have to wait until you hit top dose. But don’t worry if nothing happens for the first 5 - 7 days. It takes a while for the meds to build up in your system, so don’t panic if they don’t seem to be working. Give them at least a week, and it may take 200 or 300mg to be optimal for you. Unfortunately, everyone is different. That’s one of the fun things with this complaint!

Alcohol - not a good idea, except you do get drunk much quicker, so that’s an upside! Tegretol intensifies the effects of alcohol. I once had a chocolate pudding with brandy in it and felt as if I had drunk two glasses of wine, so 1 tablespoon of alcohol = two glasses on Tegretol! I didn’t notice any unpleasant side effects though, I just got very drunk. On the other hand, the most I’ve ever drunk is one very small glass of wine, so I’m not swearing to what happens after that. It makes us really cheap dates! I’m more or less teetotal so I would say you probably won’t react that bad since you do drink, but just go very slow till you see how your body reacts to it. You don’t want to be puking up or passing out in court; that won’t make you look very reliable!

And you should be well on your way to shock free for your son’s wedding. I still have problems with eating, and I’m on 600mg of Tegretol, but you could go higher than that, if it works for you. Unfortunately, it was too toxic for me at 800mg (bad nausea and very unsteady, but it might have got better if I’d persevered, but I can’t stand feeling sick so I abandoned it after a couple of weeks with no improvement and dropped back down to 600mg). I found Tegretol was great with Lamotrigine. My neurologist said it makes Tegretol work better, and it really did. My mouth felt almost normal, but I had a constant crippling migraine with Lamotrigine. However, that’s a rare(ish) response to it; most people seem to tolerate it well – certainly I’ve not found anyone else on here who’s ever had migraines with it; a lot of people use it. I would certainly recommend it if, like me, you have residual pain that Tegretol isn’t clearing up. The important thing is Tegretol should get rid of the shocks for you and everything is clearer once you get them out of your life. After that you can make a better decision about how much you want to pursue less pain against more side effects. Right now I’m on a holiday from drug testing, but in a week or so I will be combining mine with Gabapentin to see if I have any more luck with that. I would dearly love to be able to eat on the right side of my mouth, and I have a fear of winter – my pain is much worse in winter!
Anjie said:

Woman with the electric teeth said:

Hi Anjie. If you are having the ‘shocks’ then you are having TN pains. The fact that things like touching your lip triggers them is very obvious. Also, you shouldn’t be reduced to liquid foods - that’s no quality of life, and the fear and anxiety makes the whole thing worse. As someone who suffers with the side effects of meds to the full (I had a 6 week migraine recently from meds - not the one you have, so relax!) I can tell you three things that might reassure you:

1) NOTHING the meds do to you is as bad as the TN pains. It’s Tegretol you’ve got, right? Tegretol is Carbamazepine; that’s the gold standard drug they put everyone on first because it’s the most effective drug with the most manageable side effects. The worst side effects are likely to be drowsiness - it makes you sleepy when you first take it. And unsteady gait - you feel drunk and lurch about. That’s more funny for others to watch than truly unpleasant. You may also get some nausea - but that’s usually all you get. It doesn’t usually cause vomiting, so you can relax there.

2. Second most important thing to remember. You can stop meds. Anytime. This is not a death sentence. You take them, and if you don’t like them, stop them. How will you be worse off?

3. The side effects stop. That’s the great thing about Carbamazepine, the side effects settle down till you feel virtually normal. I’ve been on the drugs quite a few months now and all I really get is some nausea if I let myself get too hungry, some unsteadiness on my feet, especially if I’ve been lying down, and stupidity. That’s the worst one for me - not being able to remember words. But it’s not a horrible pain or sickness, just annoying. But I had all the side effects in spades when I first started so I am living proof that they do settle down if you just persevere. And I no longer get the electric shocks. My mouth’s not right yet, but we’re working on it.

Yeah, there’s loads of other side effects, like easy bruising (still do that one, but hey - how often do you bruise yourself?), but most of them are teeny flea-bites. The side effects warnings that come with the packet are truly alarming, but as my doctor said, “They list all that to cover their asses in case anyone sues”. They won’t all happen to you!

If you decide to take them - and I think you should because you are suffering unnecessarily - feel free to come and ask me anything if you get a weird result. I had all kinds of strange things, like burning pee (honestly) and hallucinations (they were fun), but they all passed. The secret with the drugs is to not take too high a dose too quickly. You have to ease into them slowly, or it makes the side effects worse. Again, ask me anything you want. I’m queen of handling shitty side effects!

Thank you, it’s reassuring to hear from someone who is taking the meds already. I can;t recall the dose but think it was one tablet (prob 100mg) a night for seven nights, then one at night and one on morning for the next week, then two at night one on a morning the third week and then 2 am and 2 pm after that. My job is quite demanding and I have to be on the ball as have to attend court etc so I am slightly concerned that the side effects may hamper me but I could maybe take a few days off to give them a try. Can I ask if you know how they interact with alcohol? Would hate to go out, have a drink and then cause some hideous reaction. It would be nice not to have so much pain though. My son gets married in November and I have been worrying about the day as I know I won’t be able to eat and if the jumpy pain is there I won’t be able to wear make up or smile for the photos. Silly how such small things can cause such worry isn’t it lol Can I ask your name, hate to call you woman with the electric teeth all of the time

upping them every 2 weeks sounds like a good option, more time to let myself get adjusted to them. To be honest if I wasn’t in so much discomfort I wouldn’t drink alcohol as often but I find alcohol on an evening followed by an amytriptiline means that I fall asleep as soon as I’m in bed and don;t feel anything until i get up. Strange thing is I don’t seem to get as much pain until I’m up walking about, When it was at its peak, even the vibration from walking would cause shocks and that was no fun at all. I hadn’t even thought about the effect of winter but I can imagine the cold and wind could be a trigger for me, Any tips for surviving that apart from wrapping my head in bubble wrap lol

[Anjie]

thank you lol I was having trouble working out where I should type, gawd I'm such a novice! I find it so weird how this darn illness mimics dental problems so closely, no wonder we all have such trouble getting a diagnosis! I never imagined teeth could hurt so much and it's so hard trying to explain to the boss at work why I can't do 2 hours solid interview time with a client. I'm sure he thinks I'm just being awkward but it is so embarrassing yelping in pain during an interview and having to explain myself - TN sends professionalism out the window at times! I'm lucky I have a good NHS dentist who suffers TMj as do I and he has refused to pull teeth recently and told me I would still get the same pain in my gums, Shame the private dentist who has just had £920 outta me didn't have the same outlook
Woman with the electric teeth said:

The one downside to upping every two weeks I should mention is that every time you up a dose you have to go through the same side effects again. So, in my case, for example, I had three or four days of burning pee every time I upped a dose. And my skin tasting of salt, and, and.. You get the picture. I honestly don't know if you might not notice that if you up each week. Everyone recommends the weekly thing, but I reckon that's because they're doctors who don't actually have to deal with the damn side effects! So I'm sticking to fortnightly uppings, thanks, but just felt I should tell you. You have options!

And it's not odd at all to not get pain during the night, or to not notice it till you are up and about. Mine's never started till I took my mouthguard out in the morning. I could actually judge how bad a day would be by how sore that was. I used to love going to bed because it was respite. It's one of the oddities of the disease that it doesn't hurt when you're asleep. And I get the vibration thing completely. It took me a while to realise that it hurt me to walk and it was the impact of my foot hitting the ground. The wind is a terrible trigger. Easily, hands down my worst. Perhaps only going outdoors to in, and vice versa, gives it competition. I used to wrap my face in a scarf but it was suffocating and of limited success. Everybody here does it though. I'm considering a cyclist's mask thingy this year. Ok, I'll look like a mugger but who cares? But hey - you'll be shock free by then, and much braver! No worries.

P.S. Just a tip about posting on here. If you make sure your cursor is above where it says "The woman with the electric teeth says..." before you answer it will place your answer above mine and it will be much easier to find. At the moment I'm having to trawl through all the text to find your reply!
Anjie said:

Woman with the electric teeth said:

Hi Anjie. No problem. Yeah, that dose timetable they've put you on is fine. When I first started I was increasing the dose every fortnight, not every week, and I would recommend that. But you may well a) be tougher than I am and b) have a body that can take the meds better. Incidentally, this might cheer you up, I found the electric shocks stopped at 200mg - and it was GREAT! So you may not have to wait until you hit top dose. But don't worry if nothing happens for the first 5 - 7 days. It takes a while for the meds to build up in your system, so don't panic if they don't seem to be working. Give them at least a week, and it may take 200 or 300mg to be optimal for you. Unfortunately, everyone is different. That's one of the fun things with this complaint!

Alcohol - not a good idea, except you do get drunk much quicker, so that's an upside! Tegretol intensifies the effects of alcohol. I once had a chocolate pudding with brandy in it and felt as if I had drunk two glasses of wine, so 1 tablespoon of alcohol = two glasses on Tegretol! I didn't notice any unpleasant side effects though, I just got very drunk. On the other hand, the most I've ever drunk is one very small glass of wine, so I'm not swearing to what happens after that. It makes us really cheap dates! I'm more or less teetotal so I would say you probably won't react that bad since you do drink, but just go very slow till you see how your body reacts to it. You don't want to be puking up or passing out in court; that won't make you look very reliable!

And you should be well on your way to shock free for your son's wedding. I still have problems with eating, and I'm on 600mg of Tegretol, but you could go higher than that, if it works for you. Unfortunately, it was too toxic for me at 800mg (bad nausea and very unsteady, but it might have got better if I'd persevered, but I can't stand feeling sick so I abandoned it after a couple of weeks with no improvement and dropped back down to 600mg). I found Tegretol was great with Lamotrigine. My neurologist said it makes Tegretol work better, and it really did. My mouth felt almost normal, but I had a constant crippling migraine with Lamotrigine. However, that's a rare(ish) response to it; most people seem to tolerate it well – certainly I've not found anyone else on here who's ever had migraines with it; a lot of people use it. I would certainly recommend it if, like me, you have residual pain that Tegretol isn't clearing up. The important thing is Tegretol should get rid of the shocks for you and everything is clearer once you get them out of your life. After that you can make a better decision about how much you want to pursue less pain against more side effects. Right now I'm on a holiday from drug testing, but in a week or so I will be combining mine with Gabapentin to see if I have any more luck with that. I would dearly love to be able to eat on the right side of my mouth, and I have a fear of winter – my pain is much worse in winter! Anjie said:

Woman with the electric teeth said:

Hi Anjie. If you are having the 'shocks' then you are having TN pains. The fact that things like touching your lip triggers them is very obvious. Also, you shouldn't be reduced to liquid foods - that's no quality of life, and the fear and anxiety makes the whole thing worse. As someone who suffers with the side effects of meds to the full (I had a 6 week migraine recently from meds - not the one you have, so relax!) I can tell you three things that might reassure you:

1) NOTHING the meds do to you is as bad as the TN pains. It's Tegretol you've got, right? Tegretol is Carbamazepine; that's the gold standard drug they put everyone on first because it's the most effective drug with the most manageable side effects. The worst side effects are likely to be drowsiness - it makes you sleepy when you first take it. And unsteady gait - you feel drunk and lurch about. That's more funny for others to watch than truly unpleasant. You may also get some nausea - but that's usually all you get. It doesn't usually cause vomiting, so you can relax there.

2. Second most important thing to remember. You can stop meds. Anytime. This is not a death sentence. You take them, and if you don't like them, stop them. How will you be worse off?

3. The side effects stop. That's the great thing about Carbamazepine, the side effects settle down till you feel virtually normal. I've been on the drugs quite a few months now and all I really get is some nausea if I let myself get too hungry, some unsteadiness on my feet, especially if I've been lying down, and stupidity. That's the worst one for me - not being able to remember words. But it's not a horrible pain or sickness, just annoying. But I had all the side effects in spades when I first started so I am living proof that they do settle down if you just persevere. And I no longer get the electric shocks. My mouth's not right yet, but we're working on it.

Yeah, there's loads of other side effects, like easy bruising (still do that one, but hey - how often do you bruise yourself?), but most of them are teeny flea-bites. The side effects warnings that come with the packet are truly alarming, but as my doctor said, "They list all that to cover their asses in case anyone sues". They won't all happen to you!

If you decide to take them - and I think you should because you are suffering unnecessarily - feel free to come and ask me anything if you get a weird result. I had all kinds of strange things, like burning pee (honestly) and hallucinations (they were fun), but they all passed. The secret with the drugs is to not take too high a dose too quickly. You have to ease into them slowly, or it makes the side effects worse. Again, ask me anything you want. I'm queen of handling shitty side effects!

Thank you, it's reassuring to hear from someone who is taking the meds already. I can;t recall the dose but think it was one tablet (prob 100mg) a night for seven nights, then one at night and one on morning for the next week, then two at night one on a morning the third week and then 2 am and 2 pm after that. My job is quite demanding and I have to be on the ball as have to attend court etc so I am slightly concerned that the side effects may hamper me but I could maybe take a few days off to give them a try. Can I ask if you know how they interact with alcohol? Would hate to go out, have a drink and then cause some hideous reaction. It would be nice not to have so much pain though. My son gets married in November and I have been worrying about the day as I know I won't be able to eat and if the jumpy pain is there I won't be able to wear make up or smile for the photos. Silly how such small things can cause such worry isn't it lol Can I ask your name, hate to call you woman with the electric teeth all of the time :)

upping them every 2 weeks sounds like a good option, more time to let myself get adjusted to them. To be honest if I wasn't in so much discomfort I wouldn't drink alcohol as often but I find alcohol on an evening followed by an amytriptiline means that I fall asleep as soon as I'm in bed and don;t feel anything until i get up. Strange thing is I don't seem to get as much pain until I'm up walking about, When it was at its peak, even the vibration from walking would cause shocks and that was no fun at all. I hadn't even thought about the effect of winter but I can imagine the cold and wind could be a trigger for me, Any tips for surviving that apart from wrapping my head in bubble wrap lol

[Woman_with_the_elect]

Oh, yeah, as the Americans say, I feel ya! Sudden attacks and unexpected yells become a way of life. Horrible. My worst was crossing a wide, busy road and although I was wrapped up like a mummy, one still got me when the wind hit me just wrong and I froze, traffic thundering towards me both ways and me like a rabbit on the white lines. Not fun. But I also got them in supermarkets, all the bloody time. I'd only just be over my five minutes of hell, from going into a warmer environment, when another attack would suddenly hit me in deodorants, probably because I'd gone there from the chiller cabinets (a nightmare, as are air blowers, which supermarkets love). I'd be hanging on a shelf wincing and in a cold sweat as the damn things one-two-three'd me. Merciless. Yep, I was never gladder than when I got on Carbamazepine, side effects and all.

I also feel you on the dental front. I, like all TN sufferers, I went to the dentist at first, absolutely sure a huge hole must have rotted in my tooth for this much pain, and we actually started a root canal. But fortunately I got suspicious, because the symptoms didn't feel quite right, and I looked my symptoms up and found TN straight away. I think I had the shortest, easiest transition time into a TN diagnosis ever! Some poor souls lose loads of teeth and have a ton of unnecessary work. Sounds as if you might have suffered that way yourself. But I suffered the tortures of the damned with worry about whether I was doing the right thing, and shouldn't I finish the root canal?, and on and on my anxiety went, made much worse by the fact I am dental phobic so anything to do with teeth freaks me out. But it took me the longest time to make my peace with it and accept it was just(!) TN, not teeth. Believe it or not, the thing I found most helpful was when I first went on medication and the shocks went – that was great, but also when I had to drop & change medication, because then the pain was getting better then worse then better again and I suddenly realised that there was no way this was a tooth problem because bad teeth don't do this – they just hurt and stay hurting. But hell, yes, it is the best mimic ever, curse it.
Anjie said:

thank you lol I was having trouble working out where I should type, gawd I'm such a novice! I find it so weird how this darn illness mimics dental problems so closely, no wonder we all have such trouble getting a diagnosis! I never imagined teeth could hurt so much and it's so hard trying to explain to the boss at work why I can't do 2 hours solid interview time with a client. I'm sure he thinks I'm just being awkward but it is so embarrassing yelping in pain during an interview and having to explain myself - TN sends professionalism out the window at times! I'm lucky I have a good NHS dentist who suffers TMj as do I and he has refused to pull teeth recently and told me I would still get the same pain in my gums, Shame the private dentist who has just had £920 outta me didn't have the same outlook
Woman with the electric teeth said:

The one downside to upping every two weeks I should mention is that every time you up a dose you have to go through the same side effects again. So, in my case, for example, I had three or four days of burning pee every time I upped a dose. And my skin tasting of salt, and, and.. You get the picture. I honestly don't know if you might not notice that if you up each week. Everyone recommends the weekly thing, but I reckon that's because they're doctors who don't actually have to deal with the damn side effects! So I'm sticking to fortnightly uppings, thanks, but just felt I should tell you. You have options!

And it's not odd at all to not get pain during the night, or to not notice it till you are up and about. Mine's never started till I took my mouthguard out in the morning. I could actually judge how bad a day would be by how sore that was. I used to love going to bed because it was respite. It's one of the oddities of the disease that it doesn't hurt when you're asleep. And I get the vibration thing completely. It took me a while to realise that it hurt me to walk and it was the impact of my foot hitting the ground. The wind is a terrible trigger. Easily, hands down my worst. Perhaps only going outdoors to in, and vice versa, gives it competition. I used to wrap my face in a scarf but it was suffocating and of limited success. Everybody here does it though. I'm considering a cyclist's mask thingy this year. Ok, I'll look like a mugger but who cares? But hey - you'll be shock free by then, and much braver! No worries.

P.S. Just a tip about posting on here. If you make sure your cursor is above where it says "The woman with the electric teeth says..." before you answer it will place your answer above mine and it will be much easier to find. At the moment I'm having to trawl through all the text to find your reply! Anjie said:

Woman with the electric teeth said:

Hi Anjie. No problem. Yeah, that dose timetable they've put you on is fine. When I first started I was increasing the dose every fortnight, not every week, and I would recommend that. But you may well a) be tougher than I am and b) have a body that can take the meds better. Incidentally, this might cheer you up, I found the electric shocks stopped at 200mg - and it was GREAT! So you may not have to wait until you hit top dose. But don't worry if nothing happens for the first 5 - 7 days. It takes a while for the meds to build up in your system, so don't panic if they don't seem to be working. Give them at least a week, and it may take 200 or 300mg to be optimal for you. Unfortunately, everyone is different. That's one of the fun things with this complaint!

Alcohol - not a good idea, except you do get drunk much quicker, so that's an upside! Tegretol intensifies the effects of alcohol. I once had a chocolate pudding with brandy in it and felt as if I had drunk two glasses of wine, so 1 tablespoon of alcohol = two glasses on Tegretol! I didn't notice any unpleasant side effects though, I just got very drunk. On the other hand, the most I've ever drunk is one very small glass of wine, so I'm not swearing to what happens after that. It makes us really cheap dates! I'm more or less teetotal so I would say you probably won't react that bad since you do drink, but just go very slow till you see how your body reacts to it. You don't want to be puking up or passing out in court; that won't make you look very reliable!

And you should be well on your way to shock free for your son's wedding. I still have problems with eating, and I'm on 600mg of Tegretol, but you could go higher than that, if it works for you. Unfortunately, it was too toxic for me at 800mg (bad nausea and very unsteady, but it might have got better if I'd persevered, but I can't stand feeling sick so I abandoned it after a couple of weeks with no improvement and dropped back down to 600mg). I found Tegretol was great with Lamotrigine. My neurologist said it makes Tegretol work better, and it really did. My mouth felt almost normal, but I had a constant crippling migraine with Lamotrigine. However, that's a rare(ish) response to it; most people seem to tolerate it well – certainly I've not found anyone else on here who's ever had migraines with it; a lot of people use it. I would certainly recommend it if, like me, you have residual pain that Tegretol isn't clearing up. The important thing is Tegretol should get rid of the shocks for you and everything is clearer once you get them out of your life. After that you can make a better decision about how much you want to pursue less pain against more side effects. Right now I'm on a holiday from drug testing, but in a week or so I will be combining mine with Gabapentin to see if I have any more luck with that. I would dearly love to be able to eat on the right side of my mouth, and I have a fear of winter – my pain is much worse in winter! Anjie said:

Woman with the electric teeth said:

Hi Anjie. If you are having the 'shocks' then you are having TN pains. The fact that things like touching your lip triggers them is very obvious. Also, you shouldn't be reduced to liquid foods - that's no quality of life, and the fear and anxiety makes the whole thing worse. As someone who suffers with the side effects of meds to the full (I had a 6 week migraine recently from meds - not the one you have, so relax!) I can tell you three things that might reassure you:

1) NOTHING the meds do to you is as bad as the TN pains. It's Tegretol you've got, right? Tegretol is Carbamazepine; that's the gold standard drug they put everyone on first because it's the most effective drug with the most manageable side effects. The worst side effects are likely to be drowsiness - it makes you sleepy when you first take it. And unsteady gait - you feel drunk and lurch about. That's more funny for others to watch than truly unpleasant. You may also get some nausea - but that's usually all you get. It doesn't usually cause vomiting, so you can relax there.

2. Second most important thing to remember. You can stop meds. Anytime. This is not a death sentence. You take them, and if you don't like them, stop them. How will you be worse off?

3. The side effects stop. That's the great thing about Carbamazepine, the side effects settle down till you feel virtually normal. I've been on the drugs quite a few months now and all I really get is some nausea if I let myself get too hungry, some unsteadiness on my feet, especially if I've been lying down, and stupidity. That's the worst one for me - not being able to remember words. But it's not a horrible pain or sickness, just annoying. But I had all the side effects in spades when I first started so I am living proof that they do settle down if you just persevere. And I no longer get the electric shocks. My mouth's not right yet, but we're working on it.

Yeah, there's loads of other side effects, like easy bruising (still do that one, but hey - how often do you bruise yourself?), but most of them are teeny flea-bites. The side effects warnings that come with the packet are truly alarming, but as my doctor said, "They list all that to cover their asses in case anyone sues". They won't all happen to you!

If you decide to take them - and I think you should because you are suffering unnecessarily - feel free to come and ask me anything if you get a weird result. I had all kinds of strange things, like burning pee (honestly) and hallucinations (they were fun), but they all passed. The secret with the drugs is to not take too high a dose too quickly. You have to ease into them slowly, or it makes the side effects worse. Again, ask me anything you want. I'm queen of handling shitty side effects!

Thank you, it's reassuring to hear from someone who is taking the meds already. I can;t recall the dose but think it was one tablet (prob 100mg) a night for seven nights, then one at night and one on morning for the next week, then two at night one on a morning the third week and then 2 am and 2 pm after that. My job is quite demanding and I have to be on the ball as have to attend court etc so I am slightly concerned that the side effects may hamper me but I could maybe take a few days off to give them a try. Can I ask if you know how they interact with alcohol? Would hate to go out, have a drink and then cause some hideous reaction. It would be nice not to have so much pain though. My son gets married in November and I have been worrying about the day as I know I won't be able to eat and if the jumpy pain is there I won't be able to wear make up or smile for the photos. Silly how such small things can cause such worry isn't it lol Can I ask your name, hate to call you woman with the electric teeth all of the time :)

upping them every 2 weeks sounds like a good option, more time to let myself get adjusted to them. To be honest if I wasn't in so much discomfort I wouldn't drink alcohol as often but I find alcohol on an evening followed by an amytriptiline means that I fall asleep as soon as I'm in bed and don;t feel anything until i get up. Strange thing is I don't seem to get as much pain until I'm up walking about, When it was at its peak, even the vibration from walking would cause shocks and that was no fun at all. I hadn't even thought about the effect of winter but I can imagine the cold and wind could be a trigger for me, Any tips for surviving that apart from wrapping my head in bubble wrap lol