Tuesday 29/12/09
Had a good two days - mild crackly feelings over the outer part of the tongue and some greasiness but that's it. Am able to forget about it quite often. Currently down to a crackle along the side (where the burn along the side was) and a crackle on the underside.
Wednesday 30/12/09
Another pretty good day. Mostly a faint crackle, a bit worse now in the evening, but mostly greasy and crackly. I often forget about it now, although I think it helps that I've decided to make peace with it - I could live with this. And I feel better because I think about it less, I think.
Friday 1/1/10
Thursday was good - barely any weird sensations, seemed almost gone but in true LN injury fashion today it's back to feeling weird, greasy, a bit metallic and slightly painful.
Sunday 3/1/10
Saturday was pretty bad (though nowhere near as bad as in the beginning), back to some painful tingling, but today it's settled and again just a little tingle/crackle on the side.
It does seem like being tired or drinking alcohol causes a flare up.
I am going to try L-Carnitine this week.
Tuesday, 29 December 2009
Tuesday, 22 December 2009
Week 14
Tuesday 22/12/09
Long time since the last post, partly because tongue has been pretty good, party because I was stuck in Brussels.
Over the last week, there's been some more tingling/crackling mostly on the edge or the underside, but it shifts around.
I've had a few hours where it's felt almost normal - the times when it's normal seem to be more often and longer. But there are still bad moments - however they're localised tingling/burning, rather than the whole tongue.
The other new thing is that sometimes it just feels 'off' rather than tingling - like it would if I'd actually burnt it and then it was almost healed. Kind of watery or greasy. This can last for a while and it's easy to ignore.
So progress continues, albeit very very slowly.
Thursday 24/12/09
Bad day today - gone backwards again - tongue hurting, lips hurting. It's 13 weeks and I'm starting to think maybe it's permanent and I just have good days, rather than that I'm progressing towards healing.
Sigh.
Saturday 26/12/09
Still having a bad day. Were a few good hours on Thursday evening, but now it's bad crackly tingles.
Update - evening - much better - down to a little crackly tingle and that's it.
Sunday 27/12/09
Good day - almost non-existent and then a crackly tingle in the evening. not bothersome really.
Long time since the last post, partly because tongue has been pretty good, party because I was stuck in Brussels.
Over the last week, there's been some more tingling/crackling mostly on the edge or the underside, but it shifts around.
I've had a few hours where it's felt almost normal - the times when it's normal seem to be more often and longer. But there are still bad moments - however they're localised tingling/burning, rather than the whole tongue.
The other new thing is that sometimes it just feels 'off' rather than tingling - like it would if I'd actually burnt it and then it was almost healed. Kind of watery or greasy. This can last for a while and it's easy to ignore.
So progress continues, albeit very very slowly.
Thursday 24/12/09
Bad day today - gone backwards again - tongue hurting, lips hurting. It's 13 weeks and I'm starting to think maybe it's permanent and I just have good days, rather than that I'm progressing towards healing.
Sigh.
Saturday 26/12/09
Still having a bad day. Were a few good hours on Thursday evening, but now it's bad crackly tingles.
Update - evening - much better - down to a little crackly tingle and that's it.
Sunday 27/12/09
Good day - almost non-existent and then a crackly tingle in the evening. not bothersome really.
Thursday, 10 December 2009
Week 12
Thursday 10/12/09
Little tingle on the side, metallic taste is back but seems to only come from the side of my tongue.
This feels like a flare up, but it's so much milder that I hope this is just a little one before more good days. Yesterday was pretty good - little tingle but that was all.
Monday 14/12/09
Not posting much because my tongue's been pretty good - I can forget about it a lot of the time, so i'm trying to do that as much as possible. It's down to a little tingle, though sometimes it just feels 'off', like it's dry or something - and sometimes this spreads over the whole tongue - but it's mostly almost fine.
Little tingle on the side, metallic taste is back but seems to only come from the side of my tongue.
This feels like a flare up, but it's so much milder that I hope this is just a little one before more good days. Yesterday was pretty good - little tingle but that was all.
Monday 14/12/09
Not posting much because my tongue's been pretty good - I can forget about it a lot of the time, so i'm trying to do that as much as possible. It's down to a little tingle, though sometimes it just feels 'off', like it's dry or something - and sometimes this spreads over the whole tongue - but it's mostly almost fine.
Wednesday, 2 December 2009
Week 11
Wednesday 2/12/09
Lots of pain last night in the tip of my tongue, which is unusual. But after maybe 36 hours it has settled and there's very little pain. Back to feeling maybe 95% healed. I've developed a few little pimples on the injured side - no idea why - but this seems to be a focal point for pain (and I suspect the two combine to great effect!).
Thursday 3/12/09
Pain receded but still there, moving between different spots.
Friday 4/12/09
Saw another oral surgeon. He told me these are never permanent - ha! Well, I know better than that (although he didn't believe me). Very worn out with being spoken to like an idiot by doctors. How ridiculous to tell me they're never permanent and then ignore me when I say I know for a fact that they can be because I know of people who suffer permanently. I also told him I'd been reading about the condition and he immediately said "oh, the internet's very dangerous" and I said "no, medical journal papers" and he snorted and said who, and I said "for example Pogrel" and he said "oh, well, he is the expert" and then launched into a story about something Pogrel thought once that he disagreed with, dismissing that I'd clearly proved him wrong.
It's unbelievable to me that I'm not supposed to learn about my condition. It's also ridiculous that they think the anecdotal information I have is irrelevant. And when I try to say "I'm an academic", they brush it off. I'm fully aware of how to do high level research. I teach medical law, I have a doctorate and a fellowship at a prestigious university, yet I have to endure being spoken to like a child.
Anyway... the upshot was:
- he thinks they're never permanent
- they heal within anything up to 6 months
- there is no treatment
- I look like I'm progressing well
- healing is non-linear. He said it's not the case that the nerve heals a piece at a time, that it's better to see it as having gone haywire and it's like a thermostat that's going to go too far up, too far down until it finds its level again. He pointed out that a nerve is like a cable of wires each doing different things - temperature, vibration, touch, taste etc - these all combine to send the brain signals and when they're normal it can ignore them all and you don't feel your tongue. When they're screwed up it gets all sorts of weird signals and because these combine and change etc it sends all sorts of signals and doesn't heal in a linear way
He said this was why I got flare ups.
I don't find that particularly convincing. It also didn't answer my question about how I could feel completely healed one day but bad the next - sure, his thermostat analogy explained that, but I'm really clear on how that analogy is supported by everything else he said.
So I left yet again feeling patronised, laughed and as though I was making a bit of a fuss. But at least I'm feeling better today, even if my respect for doctors has plummeted even further.
And he also told me very quickly there is no point suing, even though I'd never mentioned it, because he does lots of legal work and these cases always fail. Whatever. Glad he's a expert on the law too, rather than me - despite my PhD in law.
Ugh.
Saturday 5/12/09
Feeling much better. Little tingle and crackle but that's all.
Sunday 6/12/09
Almost gone. Had an hour or so where it was almost normal.
Monday 7/12/09
Slight tingle back but fairly easy to ignore
Tuesday 8/12/09
Had the second part of the root canal done - just with local. All went fine. Slight tingle but ok.
Lots of pain last night in the tip of my tongue, which is unusual. But after maybe 36 hours it has settled and there's very little pain. Back to feeling maybe 95% healed. I've developed a few little pimples on the injured side - no idea why - but this seems to be a focal point for pain (and I suspect the two combine to great effect!).
Thursday 3/12/09
Pain receded but still there, moving between different spots.
Friday 4/12/09
Saw another oral surgeon. He told me these are never permanent - ha! Well, I know better than that (although he didn't believe me). Very worn out with being spoken to like an idiot by doctors. How ridiculous to tell me they're never permanent and then ignore me when I say I know for a fact that they can be because I know of people who suffer permanently. I also told him I'd been reading about the condition and he immediately said "oh, the internet's very dangerous" and I said "no, medical journal papers" and he snorted and said who, and I said "for example Pogrel" and he said "oh, well, he is the expert" and then launched into a story about something Pogrel thought once that he disagreed with, dismissing that I'd clearly proved him wrong.
It's unbelievable to me that I'm not supposed to learn about my condition. It's also ridiculous that they think the anecdotal information I have is irrelevant. And when I try to say "I'm an academic", they brush it off. I'm fully aware of how to do high level research. I teach medical law, I have a doctorate and a fellowship at a prestigious university, yet I have to endure being spoken to like a child.
Anyway... the upshot was:
- he thinks they're never permanent
- they heal within anything up to 6 months
- there is no treatment
- I look like I'm progressing well
- healing is non-linear. He said it's not the case that the nerve heals a piece at a time, that it's better to see it as having gone haywire and it's like a thermostat that's going to go too far up, too far down until it finds its level again. He pointed out that a nerve is like a cable of wires each doing different things - temperature, vibration, touch, taste etc - these all combine to send the brain signals and when they're normal it can ignore them all and you don't feel your tongue. When they're screwed up it gets all sorts of weird signals and because these combine and change etc it sends all sorts of signals and doesn't heal in a linear way
He said this was why I got flare ups.
I don't find that particularly convincing. It also didn't answer my question about how I could feel completely healed one day but bad the next - sure, his thermostat analogy explained that, but I'm really clear on how that analogy is supported by everything else he said.
So I left yet again feeling patronised, laughed and as though I was making a bit of a fuss. But at least I'm feeling better today, even if my respect for doctors has plummeted even further.
And he also told me very quickly there is no point suing, even though I'd never mentioned it, because he does lots of legal work and these cases always fail. Whatever. Glad he's a expert on the law too, rather than me - despite my PhD in law.
Ugh.
Saturday 5/12/09
Feeling much better. Little tingle and crackle but that's all.
Sunday 6/12/09
Almost gone. Had an hour or so where it was almost normal.
Monday 7/12/09
Slight tingle back but fairly easy to ignore
Tuesday 8/12/09
Had the second part of the root canal done - just with local. All went fine. Slight tingle but ok.
Wednesday, 25 November 2009
Week 10
NEVER thought I'd be writing this but here goes.
Wednesday 25/11/09
It's now the first day of week 10 and things are substantially better. I don't get much burning, and today there's none, just an odd, almost watery feeling over my whole tongue. I've just been through a minor flare up but last night there was half an hour where my whole tongue was normal again!
Sometimes this week the tingling in my lips has come back but it's gone again today. No pain now, just the 'off', watery feeling and slight crackly feeling underneath the tongue (which is new this last week or so).
the NEW thing is a lump on my gum near the tooth I had root canalled. I'm worried it's an abscess developing but I'll talk to the doctor tomorrow and go from there.
Thursday 26/11/09
Woke up with a bit of painful tingling, now back to the watery feeling with only a little tingle - one of the better days.
Lump still there, rang endo but she didn't call me back.
Friday 27/11/09
Endo's secretary called me - to tell me to lance the abscess (which is what it was) myself and to call on Monday.
Tongue 99% fine today.
Saturday 28/11/09
Again, tongue pretty much fine.
Sunday 29/11/09
Tongue a little worse but still quite ok
Tuesday 1/12/09
Some localised pain - one really burning painful spot that had been completely fine. Not sure why... Feels like a flare up but one that's much less bad than previous ones.
Wednesday 25/11/09
It's now the first day of week 10 and things are substantially better. I don't get much burning, and today there's none, just an odd, almost watery feeling over my whole tongue. I've just been through a minor flare up but last night there was half an hour where my whole tongue was normal again!
Sometimes this week the tingling in my lips has come back but it's gone again today. No pain now, just the 'off', watery feeling and slight crackly feeling underneath the tongue (which is new this last week or so).
the NEW thing is a lump on my gum near the tooth I had root canalled. I'm worried it's an abscess developing but I'll talk to the doctor tomorrow and go from there.
Thursday 26/11/09
Woke up with a bit of painful tingling, now back to the watery feeling with only a little tingle - one of the better days.
Lump still there, rang endo but she didn't call me back.
Friday 27/11/09
Endo's secretary called me - to tell me to lance the abscess (which is what it was) myself and to call on Monday.
Tongue 99% fine today.
Saturday 28/11/09
Again, tongue pretty much fine.
Sunday 29/11/09
Tongue a little worse but still quite ok
Tuesday 1/12/09
Some localised pain - one really burning painful spot that had been completely fine. Not sure why... Feels like a flare up but one that's much less bad than previous ones.
Wednesday, 18 November 2009
Week 9
Wednesday 18/11/09
Yesterday was a good day - some moments of almost complete normality again. Now back to some tingling, but it's less bad - more like the last part of a leg that's fallen asleep waking up.
Also - it now feels very dry, a bit like when you wake up with a hangover. it's not an unpleasant sensation and pretty easy to ignore. However, it's spread over more of my tongue... who knows what that means. Not me, but I can cope with this so that's something to be happy about. I'm choosing to see this as an other healing cycle, where this time the flare up is hugely less bad and hopefully there won't be many more of these.
Monday 23/11/09
After having a day of almost complete normality on Thursday, I've had another set back. My lip is now slightly sore and the tingle/burn is back - but now it's on the underside of my tongue.
Spoke to an oral surgeon who works with people with this injury - he said from his observations I'm in the group of people who are healing and that 12-14 weeks is the normal healing time. I'm at 9 weeks and substantially better than before, so I hope he's right. He also said it does go in cycles, flaring up, the settling and repeating this cycle.
Fingers still crossed.
Yesterday was a good day - some moments of almost complete normality again. Now back to some tingling, but it's less bad - more like the last part of a leg that's fallen asleep waking up.
Also - it now feels very dry, a bit like when you wake up with a hangover. it's not an unpleasant sensation and pretty easy to ignore. However, it's spread over more of my tongue... who knows what that means. Not me, but I can cope with this so that's something to be happy about. I'm choosing to see this as an other healing cycle, where this time the flare up is hugely less bad and hopefully there won't be many more of these.
Monday 23/11/09
After having a day of almost complete normality on Thursday, I've had another set back. My lip is now slightly sore and the tingle/burn is back - but now it's on the underside of my tongue.
Spoke to an oral surgeon who works with people with this injury - he said from his observations I'm in the group of people who are healing and that 12-14 weeks is the normal healing time. I'm at 9 weeks and substantially better than before, so I hope he's right. He also said it does go in cycles, flaring up, the settling and repeating this cycle.
Fingers still crossed.
Friday, 13 November 2009
Week 8
It's now Friday of week 8 and it's been pretty good this week - a few times it's completely gone away, but then it comes back - mostly as a sensation of crackly tingling down the side of my tongue that increases or decreases (often according to how tired I am or whether I talk a lot).
Not really painful, more tingly and still that dry, raspy feeling.
Sunday 15/11/09
Yesterday was a good day - not much pain at all and many points when it felt almost healed. This morning, raspy and tingly again, but has a "waking up" feel about it so fingers crossed there are more good days.
The main thing I've learned is that the symptoms go in cycles, but at the end of each cycle it's a bit better. It will flare up, the pain will spike, the burning/tingling will spread out over my tongue but when it settles, the part that's affected will be smaller.
The hardest thing is to remember that it's a cycle, because right in the middle of a flare I get panicked that it's come back and it's worse, but if this is happening to you, hold on to the belief that at least for one other person this meant it was healing. It might be for you too.
It's now, on Sunday evening, down to the smallest patch of tingling it's been yet. The end might just be in sight!
Monday 16/11/09
Best day yet! No tingling, no burning, no nothing! almost perfect, just a slight sensation difference and the back of my tongue aches, but I think that's just from testing it out all the time!
What I have noticed is the tingling has taken on a more "crackly" feeling when I have it - hard to explain, but if the tingles are little, the crackles are a similar feeling but bigger.
anyway - sooooo close to being healed!!!
Not really painful, more tingly and still that dry, raspy feeling.
Sunday 15/11/09
Yesterday was a good day - not much pain at all and many points when it felt almost healed. This morning, raspy and tingly again, but has a "waking up" feel about it so fingers crossed there are more good days.
The main thing I've learned is that the symptoms go in cycles, but at the end of each cycle it's a bit better. It will flare up, the pain will spike, the burning/tingling will spread out over my tongue but when it settles, the part that's affected will be smaller.
The hardest thing is to remember that it's a cycle, because right in the middle of a flare I get panicked that it's come back and it's worse, but if this is happening to you, hold on to the belief that at least for one other person this meant it was healing. It might be for you too.
It's now, on Sunday evening, down to the smallest patch of tingling it's been yet. The end might just be in sight!
Monday 16/11/09
Best day yet! No tingling, no burning, no nothing! almost perfect, just a slight sensation difference and the back of my tongue aches, but I think that's just from testing it out all the time!
What I have noticed is the tingling has taken on a more "crackly" feeling when I have it - hard to explain, but if the tingles are little, the crackles are a similar feeling but bigger.
anyway - sooooo close to being healed!!!
Sunday, 8 November 2009
Week 7
Started the week with it feeling good, but now for the last two days it's back to quite bad - tingly, burning and metallic. It moves around, sometimes on the side of my tongue, sometimes the tip, sometimes all over - it will move over the course of an hour.
Sunday 8/11/09
Was really painful on Saturday, but now Sunday it's getting better. But it feels like it did a few weeks ago, but never as bad as it was at first.
I just don't understand. Maybe it's another pain cycle, but I'm so tired of this improve, get worse, improve, get worse. And now that it's almost been 7 weeks since the injury I'm very scared this will be permanent. I really hope this is just another cycle.
Monday 9/11/09
Woke up and it was about the best it's ever been - so yet again, a cycle of pain leads to improvement. Pretty mild all day, just a really small spot towards the tip the tingles. Bit of battery taste sometimes, but almost gone.
Sunday 8/11/09
Was really painful on Saturday, but now Sunday it's getting better. But it feels like it did a few weeks ago, but never as bad as it was at first.
I just don't understand. Maybe it's another pain cycle, but I'm so tired of this improve, get worse, improve, get worse. And now that it's almost been 7 weeks since the injury I'm very scared this will be permanent. I really hope this is just another cycle.
Monday 9/11/09
Woke up and it was about the best it's ever been - so yet again, a cycle of pain leads to improvement. Pretty mild all day, just a really small spot towards the tip the tingles. Bit of battery taste sometimes, but almost gone.
Wednesday, 28 October 2009
Week 6
Wednesday 28/10/09
Weirdly, I now have strange tingling on the other side of my tongue from the side that was injured. This seems to me very strange - started just feeling furry, now feels tingly...
Saw another doctor. He thinks having more anaesthesia won't hurt it but he's referring me to an oral surgeon.
Sunday 1/11/09
Feeling pretty good today. have some localised tingling near the back of my tongue, it has a slightly different quality to it - more easily forgettable but still there. The sensation on the other side of my tongue went away after a day. Seem to have been through another cycle - but this time the tinging got worse and spread, and now that it's over, it's much less than before. On Friday I even had a few hours when my tongue felt normal!
Now, Sunday evening, I'd say it's 90% better - a slight tingle and a bit rough feeling, sandpapery but not painful.
The end seems to be in sight.
Weirdly, I now have strange tingling on the other side of my tongue from the side that was injured. This seems to me very strange - started just feeling furry, now feels tingly...
Saw another doctor. He thinks having more anaesthesia won't hurt it but he's referring me to an oral surgeon.
Sunday 1/11/09
Feeling pretty good today. have some localised tingling near the back of my tongue, it has a slightly different quality to it - more easily forgettable but still there. The sensation on the other side of my tongue went away after a day. Seem to have been through another cycle - but this time the tinging got worse and spread, and now that it's over, it's much less than before. On Friday I even had a few hours when my tongue felt normal!
Now, Sunday evening, I'd say it's 90% better - a slight tingle and a bit rough feeling, sandpapery but not painful.
The end seems to be in sight.
Thursday, 22 October 2009
Week 5
started the week with some pain, but again it's receded.
the burning is also less frequent - sometimes it's more just like a really dry, scratchy feeling. It also only affects the outer edge of my tongue and sometimes the tip. Haven't had any severe pain since Saturday evening and it's now Thursday morning.
fingers crossed it stays that way!
Update at the end of Week 5 - this week the pain was less than before, and the times it became bad it was never as bad as the early weeks, and I noticed it was better after each pain cycle. I now have only tingly/dry/raspy feeling on the side of my tongue that sometimes spreads to the rest of the tongue but then goes away.
It definitely gets worse if I'm tired or ill.
the burning is also less frequent - sometimes it's more just like a really dry, scratchy feeling. It also only affects the outer edge of my tongue and sometimes the tip. Haven't had any severe pain since Saturday evening and it's now Thursday morning.
fingers crossed it stays that way!
Update at the end of Week 5 - this week the pain was less than before, and the times it became bad it was never as bad as the early weeks, and I noticed it was better after each pain cycle. I now have only tingly/dry/raspy feeling on the side of my tongue that sometimes spreads to the rest of the tongue but then goes away.
It definitely gets worse if I'm tired or ill.
Thursday, 15 October 2009
Week 4
Thursday 15/10/09
Well, after thinking I was pretty much healed earlier in the week, now I'm having a bad day yet again. Probably feels about like it did back in week 2.
Sigh.
But from what I read, it goes this way. Good days, bad days and eventually you have more of the former.
It also seems like it's worse if I'm tired and run down. So time for a bit of a health kick!
Friday 16/10/09
Marginally better today, though the pain and burning keep moving to different parts of my tongue. I just don't get what's going on at all. Doctor was no help, endodontist also no help. I don't understand why they just fob me off instead of explaining things. And they get pissed off if I seem to have done any research, yet they also seem to know nothing about the condition!
Anyway, pain rating: 4
Sensations: little bit of burning, can't feel cold sensations as much as I could before, and the burning moves around. But better than yesterday.
What have I learned: alcohol and lack of sleep seem to exacerbate it and send my recovery backwards.
Weekend
Similar pattern over the weekend - pain/burning comes back, then it goes away. And repeat. And repeat.
Well, after thinking I was pretty much healed earlier in the week, now I'm having a bad day yet again. Probably feels about like it did back in week 2.
Sigh.
But from what I read, it goes this way. Good days, bad days and eventually you have more of the former.
It also seems like it's worse if I'm tired and run down. So time for a bit of a health kick!
Friday 16/10/09
Marginally better today, though the pain and burning keep moving to different parts of my tongue. I just don't get what's going on at all. Doctor was no help, endodontist also no help. I don't understand why they just fob me off instead of explaining things. And they get pissed off if I seem to have done any research, yet they also seem to know nothing about the condition!
Anyway, pain rating: 4
Sensations: little bit of burning, can't feel cold sensations as much as I could before, and the burning moves around. But better than yesterday.
What have I learned: alcohol and lack of sleep seem to exacerbate it and send my recovery backwards.
Weekend
Similar pattern over the weekend - pain/burning comes back, then it goes away. And repeat. And repeat.
Wednesday, 7 October 2009
Week 3
Wednesday 7/10/09
Felt great for the first few days of the week, and yesterday the burning and tingling was completely gone, my tongue just felt furry. Today (7/10/09), the tingling is sort of back, but it's a metallic feeling, the "tasting a battery" feeling.
I'm starting to conclude that I'll have good days and bad days. Let's hope the good ones outnumber the bad ones...
Thursday 8/10/09
Metallic taste is gone this morning, right side of tongue is slightly burning/tingling. About as it was a week ago. However, by evening the pain is back as is the metallic taste.
Am noticing things change daily, sometimes it feels like it's improving, other times it feels like i'm going backwards.
Friday 9/10/09
Same pattern - ok in the morning, then pain/burning in the evening. The worst so far this week, particularly the taste which is disgusting. All I can taste is batteries. Then, all of a sudden, all the pain is gone but the taste is there....
Saturday 10/10/09
Ok in the morning, pain builds, metallic taste is back, but it's less bad this time and the sensation has shifted to just the side of my tongue.
Sunday 11/10/09
Pattern same as yesterday but the pain is minimal, the taste is almost gone and the sensation is really on the outer edge of my tongue.
Today was the best day I've had since the injury - I'd say it feels 95% better this evening.
Overview: Over the past three weeks, in the first week it went from numb to burning. Week 2 the pain decreased and I thought I was getting better, then a huge set back with horrible pain. Week 3 pain replaced by burning and horrible metallic taste but now at the end of the week, all symptoms are receding and I feel almost well.
Things I think helped:
1. not focusing on the pain
2. taking care of myself - exercise, eating well
3. I took B supplements. The B12 sublingual seemed to make it feel better for a while
4. Alcohol was probably not great for healing, but a few glases of wine were the only thing that took the sensation and pain away so I had wine a few times to stop me obsessing about the pain. I think this was one of the best things I did because it meant I didn't get so wound up.
Felt great for the first few days of the week, and yesterday the burning and tingling was completely gone, my tongue just felt furry. Today (7/10/09), the tingling is sort of back, but it's a metallic feeling, the "tasting a battery" feeling.
I'm starting to conclude that I'll have good days and bad days. Let's hope the good ones outnumber the bad ones...
Thursday 8/10/09
Metallic taste is gone this morning, right side of tongue is slightly burning/tingling. About as it was a week ago. However, by evening the pain is back as is the metallic taste.
Am noticing things change daily, sometimes it feels like it's improving, other times it feels like i'm going backwards.
Friday 9/10/09
Same pattern - ok in the morning, then pain/burning in the evening. The worst so far this week, particularly the taste which is disgusting. All I can taste is batteries. Then, all of a sudden, all the pain is gone but the taste is there....
Saturday 10/10/09
Ok in the morning, pain builds, metallic taste is back, but it's less bad this time and the sensation has shifted to just the side of my tongue.
Sunday 11/10/09
Pattern same as yesterday but the pain is minimal, the taste is almost gone and the sensation is really on the outer edge of my tongue.
Today was the best day I've had since the injury - I'd say it feels 95% better this evening.
Overview: Over the past three weeks, in the first week it went from numb to burning. Week 2 the pain decreased and I thought I was getting better, then a huge set back with horrible pain. Week 3 pain replaced by burning and horrible metallic taste but now at the end of the week, all symptoms are receding and I feel almost well.
Things I think helped:
1. not focusing on the pain
2. taking care of myself - exercise, eating well
3. I took B supplements. The B12 sublingual seemed to make it feel better for a while
4. Alcohol was probably not great for healing, but a few glases of wine were the only thing that took the sensation and pain away so I had wine a few times to stop me obsessing about the pain. I think this was one of the best things I did because it meant I didn't get so wound up.
Tuesday, 29 September 2009
Lingual Nerve Injury - week 2
Progress so far this week
Tuesday 29/9/09
Pain rating today = 7 down to 6 then up to 7.5
Pain is now affecting less of my tongue - it's no longer on the tip, just the side (so about 50% less area now affected.
Some facial tingling. No idea what this is.
The pattern I notice is that the pain is least in the morning, then in the evening it increases in intensity. That's happened again today but it's affecting less of my tongue.
Right now I'm going back into the garden to do more hard work and ignore the pain!
Mood = positive
Wednesday 30/9/09
Pain rating: 6.5
Pain still only affecting the outer part of my tongue.
No facial tingling left. Some odd sensation in my upper lip.
Pain seems to ratchet up then go down then ratchet up again in a cycle but each cycle it's a bit better.
I think it's definitely improving. By the end of the day it was probably 50% of what it was originally
Thursday 1/10/09
Woke up to pain and tingling in my lips and face. Felt like a huge setback, but have decided not to be bothered, just to get on with it. Seems to be getting a little better as the day goes on. by the afternoon it was as good as yesterday, so I'd say it's about 50% better.
The only downside is now my lips are a bit sore and tingly, but not intolerably so.
Friday 2/10/09
Pain rating: 6
A bit of a plateau so far today. About the same as yesterday.
Saturday 3/10/09
Pain rating: 3 - 4
Substantial improvement. No bouts of spiking, stabbing pain. Constant tingle, but it's much less pronounced. I often don't notice it.
Sunday 4/10/09
Pain rating: 1
Really barely painful today. tongue still tingling and buzzing but not in a way that's painful.
I'd say I'm 70% recovered.
An anaesthetist I know recommends:
1. Don't focus on the pain. it will makes it worse and increases the chance of chronic pain. She calls it "wind up" - you become more and more sensitive to the pain
This is working for me. When I'm out in the garden or doing exercise, I think about it less and the pain decreases.
2. Get some good pain medications. Normal ones like ibruprofen, asprin etc won't work. You need ones for neuropathy, so go to the GP and if that fails, a specialist (neurologist or maxillofacial surgeon).
Tuesday 29/9/09
Pain rating today = 7 down to 6 then up to 7.5
Pain is now affecting less of my tongue - it's no longer on the tip, just the side (so about 50% less area now affected.
Some facial tingling. No idea what this is.
The pattern I notice is that the pain is least in the morning, then in the evening it increases in intensity. That's happened again today but it's affecting less of my tongue.
Right now I'm going back into the garden to do more hard work and ignore the pain!
Mood = positive
Wednesday 30/9/09
Pain rating: 6.5
Pain still only affecting the outer part of my tongue.
No facial tingling left. Some odd sensation in my upper lip.
Pain seems to ratchet up then go down then ratchet up again in a cycle but each cycle it's a bit better.
I think it's definitely improving. By the end of the day it was probably 50% of what it was originally
Thursday 1/10/09
Woke up to pain and tingling in my lips and face. Felt like a huge setback, but have decided not to be bothered, just to get on with it. Seems to be getting a little better as the day goes on. by the afternoon it was as good as yesterday, so I'd say it's about 50% better.
The only downside is now my lips are a bit sore and tingly, but not intolerably so.
Friday 2/10/09
Pain rating: 6
A bit of a plateau so far today. About the same as yesterday.
Saturday 3/10/09
Pain rating: 3 - 4
Substantial improvement. No bouts of spiking, stabbing pain. Constant tingle, but it's much less pronounced. I often don't notice it.
Sunday 4/10/09
Pain rating: 1
Really barely painful today. tongue still tingling and buzzing but not in a way that's painful.
I'd say I'm 70% recovered.
An anaesthetist I know recommends:
1. Don't focus on the pain. it will makes it worse and increases the chance of chronic pain. She calls it "wind up" - you become more and more sensitive to the pain
This is working for me. When I'm out in the garden or doing exercise, I think about it less and the pain decreases.
2. Get some good pain medications. Normal ones like ibruprofen, asprin etc won't work. You need ones for neuropathy, so go to the GP and if that fails, a specialist (neurologist or maxillofacial surgeon).
Monday, 28 September 2009
Lingual Nerve Injury - week 1
I'm writing this for all the people currently reading horror stories about lingual nerve injuries. I'm also writing it for me to stay positive while I'm hoping to heal.
I know there's lots of information out there, so I'll provide some links to that later in this blog.
I haven't recovered yet, I'm day 6 from the injury. I'm going to post my progress and if you want to follow it, I'll keep you posted - for better or worse. Here is the progress so far:
So my current recommendation is - stay calm. The more I think about it, the worse it gets so stressing seems like the wrong thing to do.
Exercising also seems to help. It is less painful and stays that way for a while afterwards.
I'm now going to focus on seeing how much I can ignore it for the rest of the day.
I'd recommend these blogs for anyone looking for more information:
NumbNoMore (recovery story plus treatment options)
Sword or Scalpel (successful recovery story)
Also try here for a wealth of information
Lingual Nerve Injury
I know there's lots of information out there, so I'll provide some links to that later in this blog.
I haven't recovered yet, I'm day 6 from the injury. I'm going to post my progress and if you want to follow it, I'll keep you posted - for better or worse. Here is the progress so far:
Tuesday 22/9/09
Root canal at 9.00am
tongue still numb in the evening
Wednesday 23/9/09
Tongue still numb.
Endodontist’s secretary called to see how I was doing, said my tongue was still numb, she brushed it off as nothing.
Evening – can only just feel it if I bite into the tongue.
Thursday 24/9/09
Numbness largely gone but replaced by burning sensation. All in right side of tongue at the front.
Pain rating 6.5
Friday 25/9/09
Essentially the same. Called endodontist (unless that was Thursday) and they are away. Receptionist clearly has no idea what it is and tells me not to worry, suggesting take pain killers (?). No help whatsoever.
Call dentist. First dentist says just use a hot compress and should go away. Doesn’t appear to know what it is. I say I might need steroids and press her. She says she and DM will research it. He calls back at 4.30pm and suggests its damage to lingual nerve, should clear up, will take time. If it doesn’t get back to them. Not much can be done. Suggests a hot compress to keep blood flow up.
Start taking B vitamins (Berocca), multivitamin and arnica.
Pain rating: 7
Saturday 26/9/09
Feels better in the morning, mostly burning at the front of the tongue only. As day progresses returns to normal. Afternoon – some tingling/burning at the right corner of lips. This is new sensation. Slightly altered sensation just below (above chin).
Burning, tingling, metallic tasting. Pain increasing.
Lip tingling went away and pain decreased. Then came back across top lip, more on right side but also a little on the left. Accompanied by increase in pain.
Have sense of taste. Can feel teeth. Some pain in back of throat.
Pain rating: 7.5
Sunday 27/9/09
Awoke with burning pain on tongue and tingling over right half of lips – upper and lower. Throughout the day tongue remained the same (including burning underneath and in throat) but lip tingling came and went.
By evening, the tingling was spread across both lips and partial across right cheek. Using hot compress for a few hours. Pain resolves quite a bit while using it but returns once stop.
Pain rating: 8.5
Monday 28/9/09
Woke up, only the right side of the tongue is burning. Pain increasing over the day. With pain increase coming right side facial tingling. Pain increases with stress levels. Pain decreased this afternoon to the lowest yet.
Pain rating: 6
So my current recommendation is - stay calm. The more I think about it, the worse it gets so stressing seems like the wrong thing to do.
Exercising also seems to help. It is less painful and stays that way for a while afterwards.
I'm now going to focus on seeing how much I can ignore it for the rest of the day.
I'd recommend these blogs for anyone looking for more information:
NumbNoMore (recovery story plus treatment options)
Sword or Scalpel (successful recovery story)
Also try here for a wealth of information
Lingual Nerve Injury
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