July 2010

Well, things are looking pretty good. I've had a few days where tongue was completely normal - really, truly completely normal. I still have days where it's a bit weird feeling (today being one of them) but it's extremely mild.

This suggests to me that it's still changing, still healing. So even though some doctors say you have 3 months or 6 months or whatever to heal, that's not my experience. I'm 10 months in and still experiencing change that is generally moving towards improvement.

I'm still not taking any supplements apart from pregnancy vitamins so this is all natural. If it's still not perfect once I've had the baby and finished feeding, then I might revisit them. But it's now completely livable. I really do forget about it 90% of the time.

I'll keep checking in, but take the lack of posts as a sign that things are close to completely healed as it indicates that I rarely think about it.

Monday 7 June 2010

Long time, no post which means things are going well.

Still some weird sensations on the tip of my tongue, but not pain - mostly horrible tastes but I think (as does doctor) that this is due to the pregnancy, not the nerve injury. I won't be able to tell which until the baby is out, of course, and that's still 4 1/2 months away...

Best tip to get rid of the nasty taste = TicTacs because they're little and last without being too sugary.

hope you're all doing well.

Good luck with the treatments Kev - let me know how they go.

Getting better

Went to the doctor and he said there's no reason if the nerve was virtually healed that it should go backwards. Much more likely is I have that odd symptom of pregnancy... a metallic taste in the mouth! Great! But it's so much better today that I think it was partly to do with the vitamins I was taking as well (which I've changed). But he said I'm probably just reading the pregnancy symptom as a LN injury symptom, but it probably isn't.

Hurrah! And today it's hugely better, nearly normal, just a smidge of rugburn feeling.

Thanks to all of you for your comments - nice to know you're out there!

i

Treatments

OK, so I'm going to post what my naturopath suggested trying but with the disclaimer - I'm not recommending these, I haven't tried them and I'm not a doctor. If you want to try them, it's your responsibility to check them and consult your doctor first.

PPMP
= potassium phosphate - 20mg
+ magnesium phosphate - 45mg
2 x 3 per day
she says its a neuromuscular activator

Omega 3
High EPA ones - 1200mg EPA
She says it assists the neural sheath and is an anti-inflammatory

Gingko Biloba
good for peripheral circulation
200mg - 4000mg
but she warns it's contraindicated with some medications and caution in pregnancy

Hypericum perforatum (St John's Wort)
again - contraindicated with medications and can have side effects - this is definitely one to be careful with, even though it's over the counter. I can't take it as it gives me nightmares and affects my mood severely.

So that disclaimer again - I'm not recommending you take these. I've posted them as things you might want to research for yourself and then check with your doctor before you take them, because they've been suggested to me. In particular remember - just because things are over the counter or 'natural' in the sense that they're herbal, doesn't mean they're neutral or only have good effects, so be careful and get proper advice first.

May 2010 - has got worse...

Well, for some reason, I've taken a turn for the worse. I can't work out why, but for the last week or so I've now got a horrible taste in my mouth. Sometimes feels rug-burned, but only a little (and moves around) but perhaps 75% of the day it tastes disgusting. This is worse than the rug-burn feeling - that I can ignore, this drives me bananas...

Anyone who's experienced this sort of set back so late on, please comment...

27 April - about 8 1/2 months!?!

The last month I've been traveling and for perhaps the first three weeks my tongue was pretty much 99% all the time. Barely any sensations and no pain. The last week or so it's got a bit worse - bit more rug-burned, sensations moving around a bit. I think this is just because I'm completely sleep deprived, so hopefully some rest will help.

I spoke to my friend who's a naturopath and acupuncturist, and she recommended a bunch of things I'm going to try. I don't want to pass them on here as I don't think it's appropriate, but I will report my own experience with things once I try them. One thing she did say echoed what my GP said - neither could see what role Acetyl L-Carnitine would have. It seemed to help me, but no idea why. If anyone has any info, I'd be keen to hear it.

OK, going to keep battling jetlag. Will report in a few days whether sleep improves the tongue.

Update

I've lost count of the month, but today is 29 March.

Still have some odd sensations, feels like rug-burn mostly. It's always there, but to varying degrees and never too bad.

I've had to stop taking the supplements as I'm pregnant, which is frustrating (although also great!) as the Carnitine and APA did seem to be helping. However, every doctor I mention them too looks at me blankly!

Saw my original dentist the other day and he vaguely asked about it. I said I'd been in constant pain for months and he just looked embarrassed. But I've decided wanting dentists to be sympathetic is pointless - they look baffled, they can't really understand the horribleness of this and I think they're a bit embarrassed that they don't really know what it is. So I'm letting them off the hook. A bit. I'd prefer it if they were curious, but I think they're worried about getting sued so they try to brush over it. Litigation culture has a lot to answer for!

The ignoring it approach is definitely helping. The less bothered I am, the more often I seem to forget. Then when I focus, I feel it more and more. Difficult to do, but I'm working on it.

Will post again in a month or so when I get back from holidays.

Probably last post

I haven't posted in over a month because I've been trying to move on and ignore the remaining weird sensations. I figure the only way my body can become desensitized to them is not to focus on them.

Now, a month after the last post, I have no pain, no tingling, no numbness. I have a slight greasy/dry feeling (unhelpful explanation, I know, but that's how it feels) and sometimes odd tastes. The taste comes and goes, the greasy/dry is fairly constant.

I get slight changes day to day, but nothing major. Whether this means it's still healing, I don't know. It's been more than 6 months since the injury, so I think that's doubtful.

I did find improvement when taking the carnitine and lipoic acid, though I don't know why. I had to stop taking them, however (not for any problem with the supplements).

All in all, reflecting on it I think the following:
1. Focusing on it doesn't help - get out and about, do some exercise, don't dwell - otherwise you'll just wind yourself up and burn the pain sensations into your brain.

2. Eat healthy and get lots of rest - I took supplements but I'm not telling anyone else to take them. I took B12, lipoic acid and carnitine. As a sample of one, I can't say if they made a difference, but the latter two did seem to. Or maybe I took them at a time when my injury was just healing. No way to tell.

3. Stay positive. Yes, some people do not heal. Most do. Focus on that rather than on the worst case scenarios. I have nothing but sympathy for those who do not heal - I know I can't really understand, but I do recall how depressed and scared I was when I wasn't healing and so I have a tiny sense of what it might be like and my heart goes out to you.

4. If you're newly injured be aware - healing goes in cycles. Mine improved, then got worse, then improved some more, then got worse for a period of 6 months. It is a rollercoaster. Don't get too down-hearted if you take a few steps backwards, it doesn't mean there's no chance of healing. Only time will tell if you heal. So stay calm.

5. Don't get hung up on wanting your dentist/endodontist etc to apologise or accept blame. Most won't and if I were their lawyer I'd advise them not to apologise as it might be construed as admitting fault and opening them up to a lawsuit. It would have made me feel better if mine hadn't been so awful to me in refusing to take me seriously and by pretty much saying it was my fault, not hers. But I've let it go because all that happened by me holding on to it was I felt pissed and she continued not to care. Now I will simply warn people about the injury, tell them to avoid blocks if they can and not to go to her unprepared for her attitude.

OK, that's it. Over and out from me. I will summarise all the old blogs into an overview of my progress one day, but I'm too busy right now.

If anything changes, I'll post again, but otherwise this is now officially behind me.

If you've found this site because you're newly injured - good luck and keep your chin up - the odds ARE in your favour!

Week 22

Tuesday 16/2/10

Week 22??? Gah.

Ignoring the injury seems to be working. It's still there, some weird greasiness, sometimes some odd flavours, often feels dry but no pain. I don't think ignoring it makes the sensations go away, but my quality of life is better now I have decided not to care that much anymore. I think about it less, so it affects me less.

I have also stopped reading online forums etc which is also good (apart from your blog Kev, which is great). If I read another thread about finding a lawyer I will scream! Not that I feel no sympathy - I absolutely do, and I do understand others have medical bills that I don't (thanks NHS) but the lawyer-bashing and the conspiracy theories about cash-hungry dentists and the rants about Septocaine just get me down. I'm happier and healthier not reading and focusing on healing and dealing.

Over and out until next week.

Week 21

Tuesday 9/2/10

Well, seems like a big set back is happening. After being pretty much fine, it's now back to a bit of pain, nasty tastes, burning on the middle of my tongue - quite a large area.

I've stopped taking the Carnitine and it does seem to track to this, although seems unlikely it has that much effect.

I'm only going to blog about it once a week for a while in the hope that ignoring it prevents it winding up.

Week 20

Ok, so am now at 5 months.

Good news - it's still basically fine. Some irritating tiny crackles today but until then has been 98% normal since last post (today is Wednesday 3/2/10). I figure these crackles are maybe the LAST cycle or close to the, as they're so minor.

Looking good. It may be it's never perfect; that's ok, I can cope with what remains.

Friday 5/2/10
Well, have definitely gone backwards. Have the greasy feeling back over a lot of the front of my tongue. And some rug-burn feeling yesterday.

Sigh. My attitude now is whatever, do you thing stupid nerve injury. I'm ignoring you.

Week 19

Tuesday 26/1/10
As Week 19 begins, tongue has been much better. Feels like the last few days it's been winding down from another cycle. Right now, it's pretty much 99.9% healed.

One thing I can definitely say is that the days I cycle to work are days when it feels better. When I drive, it's worse. I really think exercise helps.

So... let's see if it stays healed and that was the last cycle.

Wednesday 27/1/10
Fractionally worse today but still negligible. 98%.

I'm currently writing a lecture about euthanasia. Puts things very much in perspective.

Thursday 28/1/10
Still good, bit greasy feeling. I actually forgot about it for most of the day!

Friday 29/1/10
Still looking good. 99%

Sunday 31/1/10
Still good - 97%

Week 18

Wednesday 20/1/10
Was a bit off yesterday, more weird sensations and funny tastes on the tip and to the side. Up and down today, seemed to improve for a bit, now it's back to tingly, battery crackles.

Sunday 24/1/10
Still off, not painful, just greasy and tastes funny. Some tingling/crackling. Very frustrating when I really thought it was healed.

Week 17

Tuesday 12/1/10
Starting the week on a positive note, my tongue has been really good for about 5 days now. Feels slightly off, but no pain, barely any tingling and it's certainly not unpleasant. No significant relapses, either.

I could easily live with this if it got no better.

The only other thing that changed was I started taking L-Carnitine and Lipoic Acid but I'm loathe to say they made the difference, even though the change did start when I started on them...

Thursday 14/1/10
Well, the good progress continues. Still feels basically fine, a little 'off' but it's so minor. I have a little of the greasy/watery sensation but no pain and barely any tingling. In fact, I often don't think about it.

Went out sculling in the snow this morning and I swear exercise also helps. It takes my mind off it completely and I feel much better afterwards. Perhaps it's the fear of being mown down by rampaging VIIIs while I'm in a little 2x! Near miss this morning was quite hair-raising!

Saturday 16/1/10
About the same as Thursday, maybe a few more crackly tingles but I figure this is another cycle where the bad part is pretty much what I would have considered a good phase before. I forget it's even there most of the time.

Sunday 17/1/10
Not too bad today, some crackles, some weird taste but mostly fine.

Monday 18/1/10
Worst day this week. Back to being a bit more weird, some weird taste and bit greasy. Slight tingle with a little bad sensation but not quite pain. Along the side.

Week 16

Tuesday 5/1/10
Little crackle and some metallic taste at the front of my tongue on the right hand side - a spot that has been fine. All of the pain/crackle on the underside has gone, though, which is new as that's been a problem for about 6 weeks (and came on when the upperside seemed healed).

Started L-Carnitine 500mg and Alpha Lipoic Acid 100mg today.

Wednesday 6/1/10
Still just the tip of my tongue affected and no crackle on the underside. Feels greasy, tastes a bit metallic, not really painful, just a bit tingly

Thursday 7/1/10
For a few minutes last night tongue was normal, then just a tiny spot of tingling at the tip. It's back again this morning, but it's more that it feels dry and tingly, almost as though there is something on it, and it's over more of the tongue. It's a distinct change. The only thing that's different is that I've taken Lipoic Acid and Carnitine, but I would be surprised if they've made this much difference so quickly. Time will tell...

Friday 8/1/10
Another good day. It was fine all through yesterday and it's feeling pretty good today. Very minor tingle and some mouth dryness - kind of feels like 'cotton mouth' you get with a hangover! At the end of the day there was even an hour when it felt completely normal

Saturday 9/1/10
Pretty good, not perfect, but only a mild off/tingly feeling over the side and tip.

Sunday 10/1/10
Still feeling really good. This is the most sustained period of feeling good I've had since I was injured.

Monday 11/1/10
Yep, still good. I'd say 98%. Feels slightly 'weird', a little watery and greasy but vastly better than it's been in any of the previous weeks.