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.
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