Do you have tooth sensitivity to hot & cold as part of your TN?

General General TN & GPN (Old Site)
1

Hi all! I have posted on the subject of tooth sensitivity before, but I was new to the forum and didn't know much about the actual 'on the ground' symptoms of others, so I didn't know the right questions to ask. Subsequently I got mixed results. I'm going to have another bash, so please forgive me if I seem to be repeating myself here; I'll do my best to keep it as short and succinct as possible. Don't feel you need to read the context part if you don't want to – just shoot straight to the questions at the bottom, but the context does give you the background to my dilemma.

CONTEXT

When my pain first presented itself I, like a lot of people, thought it was a tooth problem. My dentist could find nothing on the X-rays, but from the pain I was describing, she thought I must have irreversible pulpitis so she picked the most likely culprit – a big, old, heavily-filled tooth and said "It's most likely to be that one. There's obviously something wrong. I'd suggest we open it up and take a look and then we'll do a root canal."

I agreed since I had never heard of TN and these electric shock pains were so severe there had to be something catastrophically wrong so it seemed like the best option to me. She opened the tooth up and confirmed that the filling was very deep and close to the nerve so she thought that must be the problem. She put a sedative dressing in with a temporary filling and sent me off.

The electric shocks continued, even only an hour after Novocaine! They were so severe I was reduced to two pureed meals a day and could not go out without a scarf, but that didn't stop them.

I think it is noteworthy that when I first went to the dentists I firmly believed it was the tooth in front, a healthy tooth but with receding gums. She told me that the recession was normal, not excessive, the X-rays were fine and that the filled tooth was more likely, hence us tackling that one, but I never had any sense that there was anything wrong with the tooth she picked.

Even with the sedative dressing in, there was no improvement. This had never happened to me before. I'd had five root canals in my time and even abscessed teeth are calmed down by sedative dressings. I found this strange and looked up electric shock pains in teeth on the internet. It brought up TN and described my symptoms so accurately I put an appointment on at the doctor's.

When I saw him I didn't tell him what I'd learned, just gave him my symptoms and he immediately said TN. He gave me Tegretol at a low dose (200mg) and this stopped the shocks in about 4-7 days. However, the sensitivity remained. And has to this day, when I am now on 600mg of Tegretol with 50mg of Lamotrigine. It has, however, varied in intensity: more drugs = less sensitivity, but it's never gone away completely.

I asked the doctor about the tooth sensitivity, but he knew nothing more than what he'd read in textbooks. He certainly knew nothing about the day-to-day experience of TN symptoms, so he suggested I complete the root canal. It then transpired a couple of appointments later that he didn't actually know what a root canal was!

I was now not happy to do the root canal, since in the interim I had read about how many TN suffers had had unnecessary dentistry. I am a dental phobic, but aside from my own terror of procedures, I was now afraid of killing a healthy tooth and, potentially worse, aggravating the TN with dentistry.

I waited and waited before making a decision, figuring I should get as much info from other sufferers as possible (this was when I first posted on here) but the results were inconclusive – some people were sure my sensitivity was a tooth problem, others were sure it was the TN.

At the end of the day I was more confused than ever. Nevertheless I made the decision to cancel it, and I asked the dentist to refill the tooth, which she did.

However, the process of opening it obviously removed more healthy tooth and placed even more filling in there, so now with my sensitivity apparently more acute, no matter what drugs we have so far thrown at it, my worry is how much can I trust this sensation? Is it simply the TN playing its usual mind tricks, or is it a simple tooth problem?

I wouldn't like to think that this tooth, which is the centre of my TN, is a simple trigger, and if I had it root canalled the trigger would be removed and all might be well. Perhaps I could reduce meds, even stop them. Perhaps I am my own worst enemy and I am on a wild goose chase, subjecting my body to ever heavier doses of frankly awful drugs, trying to achieve something that is not attainable, because this sensitivity is a simple tooth problem, not a TN problem.

My doctor and dentist are useless, neither knows the first thing about the actual experience of TN. I asked if there would be some other expert I could see who might know, but my doctor said he "didn't think that would be helpful".

Soooo… I am stuck with this quandary and chronic anxiety to go with it. I can't relax and get on with dealing with my condition because I'm always worrying if I'm bringing it on myself. Is this all my fault?

That said, many, many, MANY TN sufferers have had tooth after tooth root canalled, then extracted, and the disease just jumps from one locale to another. Occasionally some have a few months respite, even a year or more, but the TN comes back in a different tooth. I don't want to be one of them. I really do not want to make this mistake.

Likewise, in order to have root canal you must stick a big needle, not to mention fairly toxic chemicals, right down into the trigeminal nerve. Bad idea. A lot of people seem to have more trouble after dentistry. I particularly don't want this to happen, especially if it is unnecessary dentistry. So this is what I would like to know…

MY QUESTIONS:

1. Do you feel sensitivity, specifically to hot and cold (and sweet) as part of your TN? Is it an actual trigger, or is a tooth or the inside of your mouth a trigger? All of those possibly?

2. Did you make the mistake of thinking it was a tooth problem and have dental work done? If so, did the sensitivity just pop up somewhere else? How long after dentistry before a new sensitivity appeared?

3. Does your sensitivity come and go or is it constant, 24/7?

4. Have you found medications help it? If so, do they just dull it or remove it altogether?

5. Have you found ANY medication (or treatments) that help it? – other than sensitive toothpaste which I already use, and which makes no impression whatsoever. (Don't care what this is, just throw it out there!)

That's it. If you have had, or have, tooth sensitivity as part of your TN I'd be really grateful to hear from you. In fact, anything you can share with me concerning your experiences with tooth sensitivity would be both reassuring and helpful. Thanks!

2

Wow! You certainly know how to compose a discussion, I found that riveting. The short answer to all questions is yes. I started out after my first electric shock high tailing it down to the local dentist. I said to him that there was something catastrophic going on in my mouth even though I'd had a tooth filled by him just a few days earlier (on the same side) and had been pronounced cavity free. Naturally he found some random miniscule cavity and promptly filled it as well as coating my bottom teeth with some vile tasting sensitivity paste.Since then, of course, all the teeth on that side have been sensitive at one time or another, sometimes in groups and sometimes alone. Because I have ATN I have trouble with one tooth on the other side and just when I pick up the phone to book a dental appointment it goes away.

Isn't TN just the best fun you've ever had?

3

I also have TN 2 and have had a lot of dental work. My TN was triggered (after years of remission) by a filling that was what you described ... a big tooth that was mostly filling. The procedure took a long time was painful and almost immediately afterward I had pain. I thought it was a toothache and when I went back a week later I told him the filling must have a hole in it because of how painful it was. He checked and couldn't find anything wrong. I mentioned that I had TN and asked if that could be causing the pain. He looked at me like, "DUH" and said, "Yes, of course."

Sometimes when I've had dental work since then and there is pain afterwards I still think, "Maybe I don't have TN at all. Maybe it is dental related." Again, like you, my teeth can be super sensitive to cold, hot and sweet though mostly cold. I avoid chewing on the right side of my mouth when I'm having an attack. Otherwise I'm OK chewing on that side and my teeth are not ultra sensitive at those times.

The type of toothpaste you use won't matter and while your doctor prescribed medicine many of us use, you really need to see a neurologist who has dealt with TN with other patients. He/She will do a thorough examination, listen to you about where and when your pain occurs and prescribe accordingly. It may take a while to determine what treatment and dosage is best to deal with your pain.

Good luck!

4

Hi

TN affects the right side of my face but also multiple teeth and gums which are ultra sensitive like yours. Like so many here I rushed to a dentist and went to many dental appointments over the first 6 months including several visits to an oral surgeon. I changed dentists 3 times, convinced somebody was missing something. No dental work had been done before or was done during that time, just multiple x-rays and a cleaning after the pain had started. The shocks in my gums and teeth from TN are around 24/7. During the first year I tried every toothpaste known to man - sensitivity toothpastes, herbal ones, tried brushing just using baking soda, and eventually went back to the toothpaste I've used for years. I realized after a while that it wasn't the toothpaste or toothbrush exacerbating the shocks, it was the brushing itself making it worse. After a neurologist diagnosed TN last summer it all finally made sense. I'm med sensitive due to allergies plus intolerable side effects so no suggestions for you there - but one thing I've found that gives me a little temporary relief from the zapping is swishing gently with organic coconut oil several times a day, I use it like a mouthwash.

Hope things improve for you soon:)

5

Hi Catwoman, glad you enjoyed it. So you've had what I had, but more of it? Lucky you! And yeah, I had the nasty sensitivity killing gel which killed absolutely no sensitivity whatsoever. Of course.

Can I ask you, is your sensitivity quite acute, as in real wincing pain, or is it more like the kind you would treat with sensitivity toothpaste? I ask because I can't eat on my 'TN side' at all. That nasty little mother of all sensitivities won't go away. Before my meds were at the dose they are now, I couldn't even have different temperatures in my mouth, never mind on that side, so I suppose I should be grateful for small mercies.

And I really laughed at "Isn't TN just the best fun you've ever had?". In fact, I'm smirking every time I read it. So very true. Thanks for that!

Let me know how bad your sensitivity rates on the wince factor, if you have a minute. I'd appreciate it.

Chancery

catwoman said:

Wow! You certainly know how to compose a discussion, I found that riveting. The short answer to all questions is yes. I started out after my first electric shock high tailing it down to the local dentist. I said to him that there was something catastrophic going on in my mouth even though I'd had a tooth filled by him just a few days earlier (on the same side) and had been pronounced cavity free. Naturally he found some random miniscule cavity and promptly filled it as well as coating my bottom teeth with some vile tasting sensitivity paste.Since then, of course, all the teeth on that side have been sensitive at one time or another, sometimes in groups and sometimes alone. Because I have ATN I have trouble with one tooth on the other side and just when I pick up the phone to book a dental appointment it goes away.

Isn't TN just the best fun you've ever had?

6

Hi Karen, thank you for your story; that was really reassuring. I meet a lot of TN sufferers who have dental pain - it is really common - but it's usually pain, not sensitivity, per se. It's great to meet someone else who actually gets sensitivity - although not great for you, obviously!

Also great to hear you can't eat on the sensitive side of your mouth. I haven't been able to eat on the right side of my mouth (my TN trigger site) since my TN started. I really miss only having half the flavour of food! And I worry about the effect this is having on my teeth too. Unfortunately we haven't yet found a medication that has helped this - can I ask what meds you take, with their dosages? Just in case there is something I might try that might help. I'm having a lot of side effects with Tegretol and Lamotrigine so I am happy to try different ideas!

Chancery

Karen Brown said:

I also have TN 2 and have had a lot of dental work. My TN was triggered (after years of remission) by a filling that was what you described ... a big tooth that was mostly filling. The procedure took a long time was painful and almost immediately afterward I had pain. I thought it was a toothache and when I went back a week later I told him the filling must have a hole in it because of how painful it was. He checked and couldn't find anything wrong. I mentioned that I had TN and asked if that could be causing the pain. He looked at me like, "DUH" and said, "Yes, of course."

Sometimes when I've had dental work since then and there is pain afterwards I still think, "Maybe I don't have TN at all. Maybe it is dental related." Again, like you, my teeth can be super sensitive to cold, hot and sweet though mostly cold. I avoid chewing on the right side of my mouth when I'm having an attack. Otherwise I'm OK chewing on that side and my teeth are not ultra sensitive at those times.

The type of toothpaste you use won't matter and while your doctor prescribed medicine many of us use, you really need to see a neurologist who has dealt with TN with other patients. He/She will do a thorough examination, listen to you about where and when your pain occurs and prescribe accordingly. It may take a while to determine what treatment and dosage is best to deal with your pain.

Good luck!

7

Hi Obsidian, thanks for sharing your story. Like I said to Karen up above there, it's great to meet someone else who has actual sensitivity rather than just aches and pains in their teeth. Mine feels so like I have a hole in my tooth with temperature changes going straight into the nerve that it's almost impossible to convince me or my brain that that's not what it is!

I've seen one or two people in the same boat as you, who either can't, or elect not to, take medications. I've always wanted to ask, how do you cope with the random nature of the electric shocks? Before I was diagnosed, I was in a terrible state; everything I did: going in and out the house, eating, drinking, brushing my teeth, yawning, talking, would bring on shocks - and they would come out of nowhere, often two or three in a row.

I felt that the terror they induced was actually worse than the pain itself. I was afraid to do everything. I couldn't eat and lost 10lbs in two weeks. I am genuinely amazed that some of you can cope with that. How do you do it? Are your shocks more predictable than mine were? Or do yours come and go, i.e. they're not constant? Or do you get periods of remission? I would genuinely love to know. Maybe some day meds won't work for me at all (I have terrible trouble with side effects as it is), and I may need the secret of your Zen mastery!

Also, many thanks for the coconut oil tip. I will definitely try that when I get my next week's housekeeping!

Chancery



Obsidian said:

Hi

TN affects the right side of my face but also multiple teeth and gums which are ultra sensitive like yours. Like so many here I rushed to a dentist and went to many dental appointments over the first 6 months including several visits to an oral surgeon. I changed dentists 3 times, convinced somebody was missing something. No dental work had been done before or was done during that time, just multiple x-rays and a cleaning after the pain had started. The shocks in my gums and teeth from TN are around 24/7. During the first year I tried every toothpaste known to man - sensitivity toothpastes, herbal ones, tried brushing just using baking soda, and eventually went back to the toothpaste I've used for years. I realized after a while that it wasn't the toothpaste or toothbrush exacerbating the shocks, it was the brushing itself making it worse. After a neurologist diagnosed TN last summer it all finally made sense. I'm med sensitive due to allergies plus intolerable side effects so no suggestions for you there - but one thing I've found that gives me a little temporary relief from the zapping is swishing gently with organic coconut oil several times a day, I use it like a mouthwash.

Hope things improve for you soon:)

8

Hi Chancery! My sensitivity is weird really in that sometimes it's just niggling, sometimes ow! and sometimes it will cause an ache right along my jaw that then lasts for hours. Nothing ruins a really nice cup of coffee faster than a jaw ache! I've had a few blessed periods of remission over the past couple of years and am kind of in one now but not. I don't have the stabs or shocks and haven't had for a few months but I've had constant painful numbness ( the roof of my mouth feels like I've just drunk boiling water) and I've had a lot of aching. A lot. Don't you love how TN just keeps giving?? Soooo thoughtful.

I feel like I've run the gamut of symptoms during the past two years, I shudder to think that there's anything else to wrap my head around!So we agree that's it's a barrel of laughs, this thing? I don't know how people live without it :)

9

Zen mastery ... I wish! I just muddle through these days. It's been a process coming to terms with it. The first year I lost 20lbs, eating was a big problem, reactions to medications (some not even prescription) added into the mix. After diagnosis 17 months into it, I was at least able to make sense of what I was dealing with. Periods of remission? Not yet but I remain hopeful. My saving grace is that I take care of my grandchild during the week. I have so much respect for the TN folks that deal with this and still hold down jobs. As for the shocks ... I'm careful how much I talk, even find myself choosing what words to say before I speak, because some are worse to pronounce more than others - crazy, right? With eating and drinking I've learned what to avoid. Some days are reasonable, some days I'm totally out of action and no two days are the same. It's predictable only in that I know what will make it worse - stress, talking too much and lack of sleep being top of the list. If I come up with a magic remedy to make it go away I'll let you know:)

Woman with the electric teeth said:

Hi Obsidian, thanks for sharing your story. Like I said to Karen up above there, it's great to meet someone else who has actual sensitivity rather than just aches and pains in their teeth. Mine feels so like I have a hole in my tooth with temperature changes going straight into the nerve that it's almost impossible to convince me or my brain that that's not what it is!

I've seen one or two people in the same boat as you, who either can't, or elect not to, take medications. I've always wanted to ask, how do you cope with the random nature of the electric shocks? Before I was diagnosed, I was in a terrible state; everything I did: going in and out the house, eating, drinking, brushing my teeth, yawning, talking, would bring on shocks - and they would come out of nowhere, often two or three in a row.

I felt that the terror they induced was actually worse than the pain itself. I was afraid to do everything. I couldn't eat and lost 10lbs in two weeks. I am genuinely amazed that some of you can cope with that. How do you do it? Are your shocks more predictable than mine were? Or do yours come and go, i.e. they're not constant? Or do you get periods of remission? I would genuinely love to know. Maybe some day meds won't work for me at all (I have terrible trouble with side effects as it is), and I may need the secret of your Zen mastery!

Also, many thanks for the coconut oil tip. I will definitely try that when I get my next week's housekeeping!

Chancery



Obsidian said:

Hi

TN affects the right side of my face but also multiple teeth and gums which are ultra sensitive like yours. Like so many here I rushed to a dentist and went to many dental appointments over the first 6 months including several visits to an oral surgeon. I changed dentists 3 times, convinced somebody was missing something. No dental work had been done before or was done during that time, just multiple x-rays and a cleaning after the pain had started. The shocks in my gums and teeth from TN are around 24/7. During the first year I tried every toothpaste known to man - sensitivity toothpastes, herbal ones, tried brushing just using baking soda, and eventually went back to the toothpaste I've used for years. I realized after a while that it wasn't the toothpaste or toothbrush exacerbating the shocks, it was the brushing itself making it worse. After a neurologist diagnosed TN last summer it all finally made sense. I'm med sensitive due to allergies plus intolerable side effects so no suggestions for you there - but one thing I've found that gives me a little temporary relief from the zapping is swishing gently with organic coconut oil several times a day, I use it like a mouthwash.

Hope things improve for you soon:)

10

Yes Ma’am. And actually eating refrigerated foods right from the fridge can and WILL elevate my jaw and ear pain. Mostly on my left side as my right side is partially numb. So recommend eating foods at room temp. Lol

11

Hi. I also have problems with dentists. I am now a few weeks after a crown put on and pain rarely subsides. I still use Sensodyne and I am also using Orajel on afflicted area for numbing. I wish I had better answers for you as I would like more help in this direction. I have been taking extra strength Tylenol in between my regular meds until I go back to my Dr. I hope someone else will be able to give you better answers at this time to help. All the best
Chippy

12

Hi Catwoman, loved the "I don't know how people live without it." I think you've achieved a world record, having twice made me laugh about TN. Two times in four months is actually a lot for this disease. I think we could easily set up a comedy duo called the Sarcastic Sisters, doing TN jokes - damn sure there'd be money in that, and sufferers definitely need us.

I really, really wish I could get a period of remission - a week would do; I'm not greedy. My sensitivity is stable morning to night. It varies a little sometimes, but then it stays at that pitch for days/weeks at a stretch. I can actually predict how bad it's going to be as soon as I take my nightguard out each morning and the air hits my teeth.

Very oddly, the closest I get to a remission period is if some stressful event is coming up. Anything up to a fortnight beforehand the sensitivity will get worse as the stress gets worse, then on the day (or the day after) it disappears. Almost normal for 24 hours, then bang, back to TN 'normal', i.e. acute sensitivity.

I have racked my brains trying to work this one out and the only theory I can come up with is that on the day of a stressful event, when I'm actually facing 'the dragon', flight or fight chemicals can either come down or be released, I'm not sure which, and it changes pain receptors in the brain or something, i.e. 'She's facing a monster - the hell with tooth sensitivity' and it's like my brain is shut off for the day. It's the weirdest damn thing. As a useful thing to know, however, it ranks with learning not to make your trousers out of butter. Unless I run around starting fights, or breaking into the predator section of zoos, I fail to see how I could replicate that in 'real life'.

I suppose I could always take up white water rafting!

catwoman said:

Hi Chancery! My sensitivity is weird really in that sometimes it's just niggling, sometimes ow! and sometimes it will cause an ache right along my jaw that then lasts for hours. Nothing ruins a really nice cup of coffee faster than a jaw ache! I've had a few blessed periods of remission over the past couple of years and am kind of in one now but not. I don't have the stabs or shocks and haven't had for a few months but I've had constant painful numbness ( the roof of my mouth feels like I've just drunk boiling water) and I've had a lot of aching. A lot. Don't you love how TN just keeps giving?? Soooo thoughtful.

I feel like I've run the gamut of symptoms during the past two years, I shudder to think that there's anything else to wrap my head around!So we agree that's it's a barrel of laughs, this thing? I don't know how people live without it :)

13

Oh, Obsidian, you are definitely a Zen master. Anyone who can cope with the electric shocks of TN without medication has definitely earned that title.

I see yours are a little more variable than mine were, with good and bad days. Mine's were just constant, all bad days. I knew I would be shocked at every meal and every time I talked outdoors, and if I went in or out - what was really at issue was when would it strike and how bad would it be? Although why I would worry about that I don't know - it was always bad. Mine came in clusters of up to four. So you'd get one or two bad shocks then two or three fading shocks. But it also liked to do a big shock, a little one or two, you'd think they were over and - WHAM! - another one would hit. Subsequently I'd be standing in a supermarket, holding my face and a shelf for support simultaneously. Tentatively straighten up, walk on a couple of feet in a cold sweat and - SLAM! - there it was again. I was a bundle of nerves 24/7. It was a bona fide nightmare. Never have I been so glad to get medication in my life.

The meds though have their own horror story, and I couldn't agree more about people working with this disease - nothing but admiration for them. I certainly couldn't have worked when I was still getting shocks, but even with the meds it would be impossible. Every time I take a new dose I get really really stupid, can barely remember the word for salt (and often don't), am so tired I can only walk about a mile before I feel like I need to sit down or I'll die, and with these new meds (Lamotrigine) I get terrible sick headaches that last for an age, and that can be triggered by walking or any movement, and, believe it or not, apparently eating fat! Bizarre isn't word for it.

But I was curious to see you said you'd learned what not to eat and drink. Do you mean like chewy foods and so forth or is your TN actually sensitive to specific foods?

Obsidian said:

Zen mastery ... I wish! I just muddle through these days. It's been a process coming to terms with it. The first year I lost 20lbs, eating was a big problem, reactions to medications (some not even prescription) added into the mix. After diagnosis 17 months into it, I was at least able to make sense of what I was dealing with. Periods of remission? Not yet but I remain hopeful. My saving grace is that I take care of my grandchild during the week. I have so much respect for the TN folks that deal with this and still hold down jobs. As for the shocks ... I'm careful how much I talk, even find myself choosing what words to say before I speak, because some are worse to pronounce more than others - crazy, right? With eating and drinking I've learned what to avoid. Some days are reasonable, some days I'm totally out of action and no two days are the same. It's predictable only in that I know what will make it worse - stress, talking too much and lack of sleep being top of the list. If I come up with a magic remedy to make it go away I'll let you know:)

Woman with the electric teeth said:

Hi Obsidian, thanks for sharing your story. Like I said to Karen up above there, it's great to meet someone else who has actual sensitivity rather than just aches and pains in their teeth. Mine feels so like I have a hole in my tooth with temperature changes going straight into the nerve that it's almost impossible to convince me or my brain that that's not what it is!

I've seen one or two people in the same boat as you, who either can't, or elect not to, take medications. I've always wanted to ask, how do you cope with the random nature of the electric shocks? Before I was diagnosed, I was in a terrible state; everything I did: going in and out the house, eating, drinking, brushing my teeth, yawning, talking, would bring on shocks - and they would come out of nowhere, often two or three in a row.

I felt that the terror they induced was actually worse than the pain itself. I was afraid to do everything. I couldn't eat and lost 10lbs in two weeks. I am genuinely amazed that some of you can cope with that. How do you do it? Are your shocks more predictable than mine were? Or do yours come and go, i.e. they're not constant? Or do you get periods of remission? I would genuinely love to know. Maybe some day meds won't work for me at all (I have terrible trouble with side effects as it is), and I may need the secret of your Zen mastery!

Also, many thanks for the coconut oil tip. I will definitely try that when I get my next week's housekeeping!

Chancery



Obsidian said:

Hi

TN affects the right side of my face but also multiple teeth and gums which are ultra sensitive like yours. Like so many here I rushed to a dentist and went to many dental appointments over the first 6 months including several visits to an oral surgeon. I changed dentists 3 times, convinced somebody was missing something. No dental work had been done before or was done during that time, just multiple x-rays and a cleaning after the pain had started. The shocks in my gums and teeth from TN are around 24/7. During the first year I tried every toothpaste known to man - sensitivity toothpastes, herbal ones, tried brushing just using baking soda, and eventually went back to the toothpaste I've used for years. I realized after a while that it wasn't the toothpaste or toothbrush exacerbating the shocks, it was the brushing itself making it worse. After a neurologist diagnosed TN last summer it all finally made sense. I'm med sensitive due to allergies plus intolerable side effects so no suggestions for you there - but one thing I've found that gives me a little temporary relief from the zapping is swishing gently with organic coconut oil several times a day, I use it like a mouthwash.

Hope things improve for you soon:)

14

Hi Min, yep, I'm the same. When I had to reduce meds before changing to a new one, my sensitivity went ballistic. It was perilously close to shock level and I actually had shocks for 24 hours when they were first dropped. During times like that, or days of high stress, anything from the fridge is a nightmare. Just the act of it being in my mouth at a different temperature, no matter how small a nibble, or far away form the danger zone I keep it, the sensitivity will make itself felt in no uncertain fashion.

Breakfast is the worst meal of the day for me, even now, because of cold milk and berries on cereal. I often cheat and have egg and toast instead, because at this stage in my meds my sensitivity has a slightly more forgiving attitude to warm than cold - not hot, mind you, but it will tolerate very warm.

At night I have to run my night guard under the hot tap, dry it on a towel and then test it against my lips (for their sensitivity) to gauge whether its got to just above body temperature so that it's safe to put it in my mouth. 2 nights out of an average 7, I get it wrong and get a little bad-tempered grumble for my efforts. It's a - literal - pain. Rock on the right meds cocktail, I say!

Min said:

Yes Ma'am. And actually eating refrigerated foods right from the fridge can and WILL elevate my jaw and ear pain. Mostly on my left side as my right side is partially numb. So recommend eating foods at room temp. Lol
15

Hi Chippy, so you actually have sensitivity to hot and cold in a tooth that has a crown on it? I take it it's had a root canal done on it first? If so, that's fairly amazing. Can you actually feel hot and cold (or at least the pain from hot and cold!) in the (non-existent) nerve of your effectively dead tooth? Now that really is TN playing tricks on you!

Tylenol is an opiate painkiller, isn't? Or is it a Paracetamol based drug? (We don't have it here in the UK - Tylenol, I mean, not Paracetamol - we have those!) Do you find that actually works on the sensitivity? Does it stop it or just dull it? And what kind of TN do you have - classic type 1 or TN2?

Sorry about all the questions, but it's fascinating that you should feel this.

Chippy said:

Hi. I also have problems with dentists. I am now a few weeks after a crown put on and pain rarely subsides. I still use Sensodyne and I am also using Orajel on afflicted area for numbing. I wish I had better answers for you as I would like more help in this direction. I have been taking extra strength Tylenol in between my regular meds until I go back to my Dr. I hope someone else will be able to give you better answers at this time to help. All the best
Chippy
16

Hi yes I have a crown on my teeth. I cannot stand cold on a few of my teeth. Some were root canals prior to diagnosis of TN and I even had a root canal done after a crown was put on. That was weird. Still I suffer. At least if I get a severe jolt of type 1 then I can hope not to bite down and break a piece of tooth off as I had done before. As for Tylenol. It can be called Acetominophen which is like a non Aspirin and yes it has some codeine in the various strengths. Depending on the pain I use accordingly. As I am allergic to ASA. I also have straight codeine for pain. My current episodes of type 2 with the teeth aching, shooting pains on teeth that should have no pain does not abate I will be resorting to my codeine but it makes me hallucinate so I do have to be careful plus it makes one feel ill. While in Tylenol strength 2. There it is mixed with Acetominophen and not as strong.
Isn’t TN just a lot of fun as we have to really know about ourselves and what does or does not work as we are all unique. I had been in contact with a woman for a number of years who resided in Britain through dear friends. She also had TN. She sometimes blamed a portion of her TN on the damp. She also had problems with her teeth, chewing and stabbing pains. She was a dear soul. We used to compare notes and I know she would have liked to have a sounding board like this site is. Hope I have helped.
Chippy

17

To answer your question about food - I should first clarify that I have atypical TN. The shocks I have in my teeth and gums do not sound as ferocious as what you've unfortunately been dealing with. The neurologist suspected that I also have episodes of classic type 1 TN too - but atypical is what I live with day to day, which for me manifests as nasty shocks that jump around in my teeth and gums and constant crushing, burning, aching sensations in my mouth and on the right side of my face. On bad days it also feels like an ice pick is being repeatedly jabbed deep into my right ear.

I live on soft foods all the time now. Nothing hot - I'll let a hot meal sit for at least 10 minutes before I attempt to eat. Nothing too cold, and I NEVER eat crunchy, chewy, salty or spicy foods anymore. I've become a ridiculously slow eater too, l eat like an anxious bird. Bland and boring everyday, that's my recipe for survival.


Woman with the electric teeth said:

Oh, Obsidian, you are definitely a Zen master. Anyone who can cope with the electric shocks of TN without medication has definitely earned that title.

I see yours are a little more variable than mine were, with good and bad days. Mine's were just constant, all bad days. I knew I would be shocked at every meal and every time I talked outdoors, and if I went in or out - what was really at issue was when would it strike and how bad would it be? Although why I would worry about that I don't know - it was always bad. Mine came in clusters of up to four. So you'd get one or two bad shocks then two or three fading shocks. But it also liked to do a big shock, a little one or two, you'd think they were over and - WHAM! - another one would hit. Subsequently I'd be standing in a supermarket, holding my face and a shelf for support simultaneously. Tentatively straighten up, walk on a couple of feet in a cold sweat and - SLAM! - there it was again. I was a bundle of nerves 24/7. It was a bona fide nightmare. Never have I been so glad to get medication in my life.

The meds though have their own horror story, and I couldn't agree more about people working with this disease - nothing but admiration for them. I certainly couldn't have worked when I was still getting shocks, but even with the meds it would be impossible. Every time I take a new dose I get really really stupid, can barely remember the word for salt (and often don't), am so tired I can only walk about a mile before I feel like I need to sit down or I'll die, and with these new meds (Lamotrigine) I get terrible sick headaches that last for an age, and that can be triggered by walking or any movement, and, believe it or not, apparently eating fat! Bizarre isn't word for it.

But I was curious to see you said you'd learned what not to eat and drink. Do you mean like chewy foods and so forth or is your TN actually sensitive to specific foods?

Obsidian said:

Zen mastery ... I wish! I just muddle through these days. It's been a process coming to terms with it. The first year I lost 20lbs, eating was a big problem, reactions to medications (some not even prescription) added into the mix. After diagnosis 17 months into it, I was at least able to make sense of what I was dealing with. Periods of remission? Not yet but I remain hopeful. My saving grace is that I take care of my grandchild during the week. I have so much respect for the TN folks that deal with this and still hold down jobs. As for the shocks ... I'm careful how much I talk, even find myself choosing what words to say before I speak, because some are worse to pronounce more than others - crazy, right? With eating and drinking I've learned what to avoid. Some days are reasonable, some days I'm totally out of action and no two days are the same. It's predictable only in that I know what will make it worse - stress, talking too much and lack of sleep being top of the list. If I come up with a magic remedy to make it go away I'll let you know:)

Woman with the electric teeth said:

Hi Obsidian, thanks for sharing your story. Like I said to Karen up above there, it's great to meet someone else who has actual sensitivity rather than just aches and pains in their teeth. Mine feels so like I have a hole in my tooth with temperature changes going straight into the nerve that it's almost impossible to convince me or my brain that that's not what it is!

I've seen one or two people in the same boat as you, who either can't, or elect not to, take medications. I've always wanted to ask, how do you cope with the random nature of the electric shocks? Before I was diagnosed, I was in a terrible state; everything I did: going in and out the house, eating, drinking, brushing my teeth, yawning, talking, would bring on shocks - and they would come out of nowhere, often two or three in a row.

I felt that the terror they induced was actually worse than the pain itself. I was afraid to do everything. I couldn't eat and lost 10lbs in two weeks. I am genuinely amazed that some of you can cope with that. How do you do it? Are your shocks more predictable than mine were? Or do yours come and go, i.e. they're not constant? Or do you get periods of remission? I would genuinely love to know. Maybe some day meds won't work for me at all (I have terrible trouble with side effects as it is), and I may need the secret of your Zen mastery!

Also, many thanks for the coconut oil tip. I will definitely try that when I get my next week's housekeeping!

Chancery



Obsidian said:

Hi

TN affects the right side of my face but also multiple teeth and gums which are ultra sensitive like yours. Like so many here I rushed to a dentist and went to many dental appointments over the first 6 months including several visits to an oral surgeon. I changed dentists 3 times, convinced somebody was missing something. No dental work had been done before or was done during that time, just multiple x-rays and a cleaning after the pain had started. The shocks in my gums and teeth from TN are around 24/7. During the first year I tried every toothpaste known to man - sensitivity toothpastes, herbal ones, tried brushing just using baking soda, and eventually went back to the toothpaste I've used for years. I realized after a while that it wasn't the toothpaste or toothbrush exacerbating the shocks, it was the brushing itself making it worse. After a neurologist diagnosed TN last summer it all finally made sense. I'm med sensitive due to allergies plus intolerable side effects so no suggestions for you there - but one thing I've found that gives me a little temporary relief from the zapping is swishing gently with organic coconut oil several times a day, I use it like a mouthwash.

Hope things improve for you soon:)

18

Woman with Electric Teeth,

I had to write this morning because the extreme pain I was feeling all week has mostly gone away since yesterday. The only place I still have sharp pain is in the farthest tooth on the bottom right of my mouth. Any touch, especially by the tooth above, is extremely painful. But here's the thing - that tooth isn't a tooth at all but a crown. There has been a crown there for a long time so as much as it feels like a dental problem I know it has to be TN pain. The only thing I worry about is that my last episode (which lasted 11 days with constant pain) started with sharp pain in that same tooth which ended up radiating to the rest of the right side of my face. I'm hoping this time, it represents the end of that cycle of pain (fingers crossed).

19

Hi Karen. Here’s hoping your pain goes away. I too have just had a crown put on a rear molar on right side a few weeks back. Have been suffering ever since. Tooth beside it is a tooth which has had a root canal years ago. Any work in those areas seem to wake the beast. As I am writing this the beast is now sleeping however it has been persistent since I woke up. Let the beast sleep!!! Here is to a better day for us
Chippy

20

Hi Chippy, you are indeed blessed to have dead teeth that can feel pain. Not!

How awful. You kind of assume that even with TN you can't feel pain in teeth that have no nerves. You are certainly living proof that's not so. I see you are also one of the lucky TN sufferers who can use OTC painkillers, but I notice that only works for Type 2 pains. I've never even tried painkillers, I admit, because all the docs/sites say they don't work for Type 1, but the pains I've got (electric shocks and tooth sensitivity) are not really something you would treat with opiates and the like anyway.

I'm really unlucky with painkillers because I can't really use NSAID drugs, like Ibuprofen and Aspirin (Aspirin not at all), because of a hyper-sensitive gut that bleeds if I use them, so Codeine used to be my go-to drug. It got me through bad gallstones. Unfortunately after I lost my gallbladder I developed a sensitivity to those too and it caused Sphincter of Oddi malfunction, which really basically means it's like having a gallbladder attack even although you don't have a gallbladder. A bit like you and your nerveless teeth!

But you are absolutely right, there is a tremendous variety of symptoms with this disease - it seems to have been designed to create lots of new ways to suffer. Good job we're all tough!

Chippy said:

Hi yes I have a crown on my teeth. I cannot stand cold on a few of my teeth. Some were root canals prior to diagnosis of TN and I even had a root canal done after a crown was put on. That was weird. Still I suffer. At least if I get a severe jolt of type 1 then I can hope not to bite down and break a piece of tooth off as I had done before. As for Tylenol. It can be called Acetominophen which is like a non Aspirin and yes it has some codeine in the various strengths. Depending on the pain I use accordingly. As I am allergic to ASA. I also have straight codeine for pain. My current episodes of type 2 with the teeth aching, shooting pains on teeth that should have no pain does not abate I will be resorting to my codeine but it makes me hallucinate so I do have to be careful plus it makes one feel ill. While in Tylenol strength 2. There it is mixed with Acetominophen and not as strong.
Isn't TN just a lot of fun as we have to really know about ourselves and what does or does not work as we are all unique. I had been in contact with a woman for a number of years who resided in Britain through dear friends. She also had TN. She sometimes blamed a portion of her TN on the damp. She also had problems with her teeth, chewing and stabbing pains. She was a dear soul. We used to compare notes and I know she would have liked to have a sounding board like this site is. Hope I have helped.
Chippy