Hi, I'm new to the group. I've been recommended Lidocaine (I think!) patches and mouthwash and told that Helen uses these and knows how to get them from GPs here in the UK. I've been right through the friends and can't find her.
Sorry, I've probably gone right past her, or she's listed as 'H, the Gorgeous One' or something, but if you're out there Helen, could you give me a shout on these patches?
Many thanks!
I asked my dentist and GP about Lidocaine, they both said they knew nothing about the patches. The maxi-facial and neurologist never mentioned any such drug, I may have to see my GP again as it seems this Lidocaine is available and used here in the UK.
Yeah, it's a bit like the hunt for the mythic unicorn at the moment. I tried Googling it, but all it brings up is Listerine classic, which seems to have disappeared entirely from shops, and Corsodyl, which is freely available here, I have it in my cupboard, in fact, but there is no way Corsodyl would help either my sensitivity or TN pain. It's not that powerful, or what it's meant for.
Hopefully that's not what Lidocaine is and that these fabulous patches do exist. I'm not sure they would be any use to me, since the shocks come under my teeth, rather than across my skin, but I thought the mouth wash might be helpful...
Read HERE! seems it is available in the uk and on the NHS.
The more I read about your TN symptoms, the more I'm convinced its teeth related, especially after a recent worked tooth with an old filling.
I remember reading that you have lost alot of teeth in the past because of an accident, did the TN start around that time or just recently after the newly opened tooth ?
If your pain is under your teeth, it defiantly sounds teeth related. TN1 is short sharp excruciating shooting burning electric shocks across the face, cheek, eye and can shoot along the teeth.
Type 2 is constant excruciating pain 24-7 located side of face/head, teeth, ear, around eye, front of forehead, This pain stays all day long, everyday for weeks months and years with maybe short remissions.
I have both TN2 and TN1, I can say for sure that my tooth sensitivity pain is different from the TN pain itself.
Hi Dallas, great news that the patches at least exist, but I really was looking for the mouthwash. However, that gives me confidence to ask about it at any rate. You never know, maybe the patches would penetrate. It might be a really useful thing for changes in meds, now that I know it brings on shocks.
It's highly doubtful my TN symptoms can be tooth related simply because they came on BEFORE I went to the dentist. The only reason the tooth was opened at all was because the dentist made a 'best guess' as to which tooth was the likely culprit since NOTHING showed on the X-rays.
In other words, I was getting electric shocks in my teeth when I had been nowhere near a dentist in two years. Secondly, the X-rays showed no problems. I lost my back molars as a teenager, many years ago, and it was purely through bad diet and bad dentistry; it was not related to this since I haven't lost a tooth since I was around fourteen years old.
The pain being under my teeth may be a little unusual, but what case of TN isn't unusual in some personal way? The nerve runs under the teeth, it's hardly strange that it would be felt there.
There is absolutely some tooth sensitivity that 'belongs' there, and would be there whether I had TN or not. I say this because I'd had tooth sensitivity there for years before the TN came along. It had got worse recently, but I've noticed that's not an unusual precursor to TN for some people.
If it was just a tooth problem it would come and go, get better or worse and be limited to my teeth. It wouldn't give me electric shocks, nor would it be effected by breezes or going in and out of shops. I once had a cavity in a tooth right through to the nerve which eventually abscessed. I know what an exposed nerve feels like, I know the severe shock type pains of it touching the nerve, and these are NOT the same. More importantly, if that level of decay was present it would show physically and on X-rays and it simply isn't there.
Perhaps more defining than any of these is that Carbamazepine works on the pain and lowers the sensitivity to some degree every time the dose goes up. Carbamazepine doesn't work on tooth pain so that is considered a diagnostic proof.
If you are experiencing tooth sensitivity from that most recent opened tooth, you need to make sure that you have a new permanent filling placed, thats if the tooth has not suffered small micro fractures (if it has, this maybe the reason to why all the tooth sensitivity from years previous).
An old filling in a tooth can cause the tooth to crack (suffer a micro crack), these micro fractures are not always visible on x-rays. A tooth with a micro crack or even an old filling that is leaking will cause tooth sensitivity, this can happen slowly over years.
As for daily medication that is used to treat Trigeminal Neuralgia, yes it will help a tooth ache and tooth sensitivity (it will still relax the TN nerve pain signals). If a tooth has an abscess present, then TN medication will not work.
Have you had a permanent filling placed in that tooth now ?
Hi, I think the tooth sensitivity was just from it being a mighty big filling, which is why it will still be there, no matter what. I am not expecting it to disappear, simply become normal. The size of the filling was why the dentist opened it; it was the only tooth on that side that could possibly have a problem; it was for no other reason. It was not the tooth I even felt the pain in!
I'm aware of dental fractures, but the dentist tested it thoroughly with various sensitivity tests and banging it quite frighteningly with a probe - and it reacted to nothing. It's unlikely to be cracked without pain of some sort. Cracked was never brought up so the dentist obviously thought, like me, that it was not an issue.
Neurologists disagree with you about carbamazepine. I quote:
"However, if the dentist finds no clear pathology, great caution should be undertaken before doing any significant dental procedures such as root canals or tooth extractions since tooth or peridental pain may be caused by TN and not dental disease.
Dental pain is usually provoked by direct percussion to a tooth or application of cold and is diagnosed by examination of the teeth and peridental structures. Trigeminal neuralgia is often triggered by light touch about the face and may be provoked by wind, shaving, talking, eating or brushing the teeth. Carbamazepine (Tegretol) or oxcarbazepine (Trileptal) will eliminate the pain of TN but not dental pain."
I have a new permanent filling.
Dallas said:
If you are experiencing tooth sensitivity from that most recent opened tooth, you need to make sure that you have a new permanent filling placed, thats if the tooth has not suffered small micro fractures (if it has, this maybe the reason to why all the tooth sensitivity from years previous).
An old filling in a tooth can cause the tooth to crack (suffer a micro crack), these micro fractures are not always visible on x-rays. A tooth with a micro crack or even an old filling that is leaking will cause tooth sensitivity, this can happen slowly over years.
As for daily medication that is used to treat Trigeminal Neuralgia, yes it will help a tooth ache and tooth sensitivity (it will still relax the TN nerve pain signals). If a tooth has an abscess present, then TN medication will not work.
Have you had a permanent filling placed in that tooth now ?
Did the dentist do a cold stimulus test on the tooth, if the tooth is healthy you would have felt a very cold sensation. Did the cold sensation quickly disappear or did it linger ?
Yep, she tested all the teeth on that side at the original check-up and then again when I went back after my TN diagnosis to have the tooth refilled. None of the teeth reacted to cold at all: all perfectly normal. They didn't react to being whacked with the blunt end of a probe either, although I did! We even X-rayed some other teeth to make doubly sure, but nothing showed up as dodgy anywhere. I even had her look under a root canalled tooth at the back of my mouth just in case we could see a broken file tip or some such pressing on the nerve, but it was a beautiful piece of dentistry and looked perfect.
If none of your teeth reacted to a cold stimulus test (pulp vitality test), this may indicate a tooth health problem.
A normal response to a cold test is that you feel the cold stimulus very quickly and it should fade very quickly.
An abnormal response to a cold test is that you feel nothing or you feel the cold and it lingers for some time, this would also indicate a tooth health problem.
The dentist usually tests a non suspect tooth first, you should feel the cold stimulus straightaway, and as soon as the stimulus is taken away, the cold pain quickly fades.
You're taking me too literally. I mean they didn't react like sensitive teeth; they reacted like normal teeth, i.e. they didn't feel the cold any more than a healthy tooth would. I didn't mean they were dead to all sensation!
Can I ask why you are so determined that this is a tooth problem?
Hiya,
Just wanted to say that every so often I have quite incredible pain in my teeth and they really start to itch and it really hurts right under the actual teeth. At one point, I asked my dentist to pull a couple of teeth and he refused (thank goodness) as there was nothing that he could find wrong (even had x-rays done). I'm glad that he didn't, and within about 2-3 days, the pain reduced. Everyone's TN reacts differently.
Woman with the electric teeth said:
You're taking me too literally. I mean they didn't react like sensitive teeth; they reacted like normal teeth, i.e. they didn't feel the cold any more than a healthy tooth would. I didn't mean they were dead to all sensation!
Can I ask why you are so determined that this is a tooth problem?
Hi Marcie, thanks for your reply. I have 24/7 'tooth sensitivity', which is very confusing, because you keep wondering, 'IS there something wrong with my teeth?'. But using various drugs (most notably Lamotrigine) affects the pain quite noticeably so you know it's not a normal tooth problem.
I am training myself not to refer to it as tooth sensitivity but as TN that the drugs don't manage to control! That way, I think my doctors and partner take it more seriously. But I really wish I was like you and got some days of reprieve from it. Oddly, it would be more reassuring.
Can I ask you, are you a Type 2 sufferer by any chance? The reason I ask is their pain seems to come and go more often. I'm a Type 1, and I've never been lucky enough to have any periods of remission with this - it's just a constant. A pain in the arse as well as the teeth!
Marcie said:
Hiya,
Just wanted to say that every so often I have quite incredible pain in my teeth and they really start to itch and it really hurts right under the actual teeth. At one point, I asked my dentist to pull a couple of teeth and he refused (thank goodness) as there was nothing that he could find wrong (even had x-rays done). I’m glad that he didn’t, and within about 2-3 days, the pain reduced. Everyone’s TN reacts differently.
Woman with the electric teeth said:
You’re taking me too literally. I mean they didn’t react like sensitive teeth; they reacted like normal teeth, i.e. they didn’t feel the cold any more than a healthy tooth would. I didn’t mean they were dead to all sensation!
Can I ask why you are so determined that this is a tooth problem?
Hi I have tn for 8 years I have had an mvd but the pain is back in my right jaw and mouth again some days it is hard to eat. I am on carbamazepine sometimes 8 a day just to get relief .
I was wondering if anyone can recommend something else as I fear my body is getting used to carbamazepine.
Thank you all for great info Kay McGoldrick
Hi Kay, nice to meet another UK member. But you've had an MVD and the pain's come back after only 8 years (or less than 8 years)? Poor you, that seems kind of quick. Was it your first MVD? Have you had any other procedures?
kay said:
Hi I have tn for 8 years I have had an mvd but the pain is back in my right jaw and mouth again some days it is hard to eat. I am on carbamazepine sometimes 8 a day just to get relief .
I was wondering if anyone can recommend something else as I fear my body is getting used to carbamazepine.
Thank you all for great info Kay McGoldrick
Hiya,
Sorry for the late reply. Yes, I'm mainly a TN 2 sufferer but have had the classic symptoms as well. The pain that I have though is burning all the time, feeling like someone's punch me in my face, achyness, feeling like someone has drilled a hole through the side of my face. My skull hurts, my face hurts, my jaw hurts, my teeth hurt and this is on a good day. However, with the pregabalin, that helps with some of the symptoms, however the colder it gets means that I need to increase the dosage so that I can cope with the pain. I'm now trying trileptal (took first dose today) so we'll see. Winter's coming and that scares me as I know what I've been like for the last 2 winters. So we'll see what happens...
How are you coping at the moment or are things still the same?
Marcie
Woman with the electric teeth said:
Hi Marcie, thanks for your reply. I have 24/7 'tooth sensitivity', which is very confusing, because you keep wondering, 'IS there something wrong with my teeth?'. But using various drugs (most notably Lamotrigine) affects the pain quite noticeably so you know it's not a normal tooth problem.
I am training myself not to refer to it as tooth sensitivity but as TN that the drugs don't manage to control! That way, I think my doctors and partner take it more seriously. But I really wish I was like you and got some days of reprieve from it. Oddly, it would be more reassuring.
Can I ask you, are you a Type 2 sufferer by any chance? The reason I ask is their pain seems to come and go more often. I'm a Type 1, and I've never been lucky enough to have any periods of remission with this - it's just a constant. A pain in the arse as well as the teeth!
Marcie said:Hiya,
Just wanted to say that every so often I have quite incredible pain in my teeth and they really start to itch and it really hurts right under the actual teeth. At one point, I asked my dentist to pull a couple of teeth and he refused (thank goodness) as there was nothing that he could find wrong (even had x-rays done). I'm glad that he didn't, and within about 2-3 days, the pain reduced. Everyone's TN reacts differently.
Woman with the electric teeth said:You're taking me too literally. I mean they didn't react like sensitive teeth; they reacted like normal teeth, i.e. they didn't feel the cold any more than a healthy tooth would. I didn't mean they were dead to all sensation!
Can I ask why you are so determined that this is a tooth problem?
Hi Marcie, thanks for getting back to me. Yes, things are much the same for me now. I had a sort of bastard version of 'relief' from my pain when I was on Lamotrigine briefly. Unfortunately the side effects were so severe I couldn't stay on it. But even then I didn't get the dose up high enough to make an impression on my residual pain. Really that's what Carbamazepine does for me; it knocks the electric shock pain on the head, but it leaves this constant residual pain that feels like my lower right-hand side of my mouth is lit up, hyper-sensitive to temperature - my main trigger. I have been prescribed Gabapentin to try next, but I'm having a 'holiday' first to recover from the constant migraine Lamotrigine gave me.
But like you, I am absolutely dreading winter. The summer has been tolerable. I am not looking forward to going back to pain every time a wind blows or I go indoors or out!
Marcie said:
Hiya,
Sorry for the late reply. Yes, I’m mainly a TN 2 sufferer but have had the classic symptoms as well. The pain that I have though is burning all the time, feeling like someone’s punch me in my face, achyness, feeling like someone has drilled a hole through the side of my face. My skull hurts, my face hurts, my jaw hurts, my teeth hurt and this is on a good day. However, with the pregabalin, that helps with some of the symptoms, however the colder it gets means that I need to increase the dosage so that I can cope with the pain. I’m now trying trileptal (took first dose today) so we’ll see. Winter’s coming and that scares me as I know what I’ve been like for the last 2 winters. So we’ll see what happens…
How are you coping at the moment or are things still the same?
Marcie
Woman with the electric teeth said:
Hi Marcie, thanks for your reply. I have 24/7 ‘tooth sensitivity’, which is very confusing, because you keep wondering, ‘IS there something wrong with my teeth?’. But using various drugs (most notably Lamotrigine) affects the pain quite noticeably so you know it’s not a normal tooth problem.
I am training myself not to refer to it as tooth sensitivity but as TN that the drugs don’t manage to control! That way, I think my doctors and partner take it more seriously. But I really wish I was like you and got some days of reprieve from it. Oddly, it would be more reassuring.
Can I ask you, are you a Type 2 sufferer by any chance? The reason I ask is their pain seems to come and go more often. I’m a Type 1, and I’ve never been lucky enough to have any periods of remission with this - it’s just a constant. A pain in the arse as well as the teeth!
Marcie said:Hiya,
Just wanted to say that every so often I have quite incredible pain in my teeth and they really start to itch and it really hurts right under the actual teeth. At one point, I asked my dentist to pull a couple of teeth and he refused (thank goodness) as there was nothing that he could find wrong (even had x-rays done). I’m glad that he didn’t, and within about 2-3 days, the pain reduced. Everyone’s TN reacts differently.
Woman with the electric teeth said:You’re taking me too literally. I mean they didn’t react like sensitive teeth; they reacted like normal teeth, i.e. they didn’t feel the cold any more than a healthy tooth would. I didn’t mean they were dead to all sensation!
Can I ask why you are so determined that this is a tooth problem?
Woman with the electric teeth said:
Hi Kay, nice to meet another UK member. But you've had an MVD and the pain's come back after only 8 years (or less than 8 years)? Poor you, that seems kind of quick. Was it your first MVD? Have you had any other procedures?
kay said:Hi I have tn for 8 years I have had an mvd but the pain is back in my right jaw and mouth again some days it is hard to eat. I am on carbamazepine sometimes 8 a day just to get relief .
I was wondering if anyone can recommend something else as I fear my body is getting used to carbamazepine.
Thank you all for great info Kay McGoldrick
Hi I had my op in 2011 and never had any mouth trouble untill this year but i have had tn for 8 long years I was wondering about lamotrigine drug do you know anything about it
trgards Kay
Hi Kay, yeah I'm the Lamotrigine expert – or at least the Lamo' side effect expert! It was recommended by my neurologist (my doc didn't agree) because it made Tegretol work better. I was on a stupidly low dose – I only got as far as 50mg – but even there, well below the bottom useful dose (I think it's 100mg), I found it really effective. Had I been lucky enough to get up to 75mg, still below the lowest optimal dose, I reckon it would have 'cured' my residual pain. Oh, if only………
Unfortunately, it also gave me a migraine, that lasted 6 weeks, and it was a doozy. It then took a further 2 weeks after stopping it for the side effects to stop. I was crushed, and tried everything (using even more ridiculous teeny children's tablets that my doc got for me) but all to no avail. I take 600mg of Carbamazepine currently and even at that 50mg dose of Lamo' on top of my Tegretol, my mouth felt almost normal, and it has never felt normal since my TN began. I have extreme 'sensitivity' on my TN side and can't eat on it.
So yes, can highly recommend Lamo'. Most people do not seem to have a problem on it, and they actually use it to treat migraines, so I think you can assume I'm a freak, but I will just point out that "headache" is the first side effect listed on the "most common side effects" list in the packet insert! So perhaps I'm not that freaky, or maybe only freaky in the severity of my reaction.
But brilliant with Carbamazepine and I would definitely try it. If you are lucky enough to tolerate it you should find it very good indeed. Certainly couldn't hurt you to try. I can give you my full list of side effects with it if you want, but that might be more off-putting than helpful! I'd recommend it, regardless.
P.S. Did your MVD only last for 3 years then? (Arithmetic is not my strong point!)
kay said:
Woman with the electric teeth said:
Hi Kay, nice to meet another UK member. But you’ve had an MVD and the pain’s come back after only 8 years (or less than 8 years)? Poor you, that seems kind of quick. Was it your first MVD? Have you had any other procedures?
kay said:Hi I have tn for 8 years I have had an mvd but the pain is back in my right jaw and mouth again some days it is hard to eat. I am on carbamazepine sometimes 8 a day just to get relief .
I was wondering if anyone can recommend something else as I fear my body is getting used to carbamazepine.
Thank you all for great info Kay McGoldrick
Hi I had my op in 2011 and never had any mouth trouble untill this year but i have had tn for 8 long years I was wondering about lamotrigine drug do you know anything about it
trgards Kay