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!
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Thank you for this blog - I hope you don't stop posting, it is so hard to find anyone who understands this injury and can offer help, advice, and treatment recommendations. I suffer from lingual nerve injury while getting fillings 12/30/09. At this time I have had about 30% healing after spending thousands on every remedy under the sun. I am in pain every day, exhausted, have lost job, etc... I am constantly seeking any news about how this terrible thing can be treated. I am happy for your progress and can only hope mine will speed up and be complete. I have only pain, no numbness...pain never goes away and is worse some days than others and seems to have plateaued now at 4 months. I pray I'm still going to get better- Susan
ReplyDeleteHi Susan,
ReplyDeleteI'm very sorry to hear you're in pain. Are you on any pain meds? Do they help?
For me, I was still in pain at 4 months, I think. I was definitely still healing at 6 months. Now, it's about 7 1/2 I think and it's much less bad but still there - still getting better I think. Now it feels rug-burned.
I did find L-Carnitine and Alpha Lipoic Acid helped me, but it sounds to me like you need proper pain management - have you had an luck finding someone who is sympathetic and can help with that?
4 months isn't long - stay positive if you can, people do keep healing over time.
Keep in touch
Imogina
Thanks Imogina for helping put things into perspective.
ReplyDeleteI taste everything super strong vs. being numb and tasting nothing- called dysthesisia vs. parathesia (sp?). I have been taking A-lipoic for 2 months, B12 for 3, just learned about L-carnitine last week from your blog (vitamin store said there are 2 kids of carnitine and be sure to take the Acetyl-L one??)
I'd read about Nerve Fix and have been taking that for 3 weeks. I often need Oragel on the tongue, it's just nasty, but helps temporarily when I must talk.
I've done 4 low light laser treatments to the tongue, 7 acupuncture visits, and am taking Klonopin to help with the pain. Unfortunately, stress is the worst thing and it's been a really bad week. Where I was seeing progress during weeks 12-13, all of a sudden this week i took a huge step backwards. I am terrified that this won't reverse itself, but hope it's just a blip on the radar in the big scheme of things.
One thing I have noticed is that the pain has moved...I used to have it from tip of tongue to throat all along the left edge of the tongue, so that it felt like the tongue was clamped, and even into the left ear and headaches; it is now primarily on the central tongue OR back in the throat, but not usually both at once. I wonder if this is a sign of healing?
My doctor calls that "unusual", says typically recovery goes from back to front, with the tip of tongue being last to improve. Is that how yours went? (Figures I'd be the one to be backwards!)
I just hope that doesn't mean I'm getting worse. I am soooo dry and thirsty, even after I've just had water. Can only tolerate room-temp water and food. Does this sound familiar?
Hi,
ReplyDeleteMine didn't heal in the usual way either, it moved from the inside out, but then later on the tip started to be painful! go figure! what your doc says sounds familiar - I think a lot heal that way, but mine didn't.
They seem to have different theories about how it heals. one oral surgeon I saw said the cycles were the nerves 're-calibrating' - that I should think of them as all out of balance and that they're settling. I don't find it that convincing, but I'm not a doctor so I don't know.
But if the area that's painful has shrunk, then that sounds like what I experienced - the affected area got smaller and smaller over time. The pain and sensations went through ups and downs and sometimes it spread back, but mostly it moved fairly uniformly.
I took a few major steps backwards and it was ok. If you read back through all my (fascinating!) old posts, you'll see that. It used to terrify me and I had to really work at remembering that it had cycled like that before and would again. Try also looking at Kev's blog: http://lingualnerverecovery.blogspot.com/
He has cycles too.
I can't say if you're getting worse, but I can say mine had major ups and downs and yours might be too. So don't put too much weight on one bad week - just stay positive, try to keep your mind off it and work on thinking through how you can cope.
Each day, if it got better I'd tell myself "I can live with this" and then when it got better I'd say "if I could live with that, I can totally live with this" and so on. It made me feel much more positive than thinking "how can I live with this?"
hope that helps. I'm going away for 3 1/2 weeks so if I don't reply to any more posts, that's why. happy to talk more when I get back.
keep your chin up!
ps - I took the Acetyl carnitine
Imogina,
ReplyDeleteI hope you had a great trip. I am still at the point after 5 months I can barely make a trip to the mall, much less dream of travel. I hope some day to heal to the point you have. Still looking for answers and treatments. My energy level is zilch, but that is probably because I wake every night in pain at 4:30am and can't get back to sleep, and from meds (which don't seem to help much, just make me tired - did you find any prescribed meds helpful? I haven't tried Neurontin, they keep trying to put me on antidepressants, the latest is Nortriptilene which zonks me out).
I am having a "good" day today with headache pain level around 9 and tongue pain of around 5, and radiating jaw/tooth pain around 6; this after 2 days of constant tears from the pain being closer to a "10". So yes, cyclical is the word...
I was given a recovery estimate from a neurologist of 6 mos - 1 yr, though he said nobody really knows, and the recovery could be partial or not at all, so I should try to just learn to live with it. Really now?! Easy for him to say.
I'm using your positive words as inspiration, because hard to find anywhere else. There is so little information on this thing - I saw 6 doctors/dentists and not ONE diagnosed me correctly! So how is one supposed to know how to cure me? Incredibly frustrating for someone who never even catches a cold, much less some potentially "incurable" nerve injury!
I am normally a very social, friendly person, but now avoid the phone like the plague and if I have to talk, I can tough it out for an hour or two when necessary, but cannot work a full 9-hour day; no way. Trying to find a job that requires no speaking is pretty ironic. Perhaps I should look up "Mime" in the help wanteds. haha.
Pain in cheek continues 24x7 but I will say that the tongue feels more...spread out. Duller pain all over vs. intense in smaller area. Sometimes pain is in throat, sometimes ear, often temporal headaches. Jumps around every few days, did you notice that, too?
Sorry for the lengthy questioning!
Hi
ReplyDeleteI'm still on holidays so not much internet. Sorry to hear you're still in pain.
I did manage to see a friend of mine who is a naturopath and acupuncturist and she had a lot of helpful suggestions for healing. If you can manage to see one, perhaps that might be an alternative route that might help.
I'm still pondering how I feel about putting her suggestions online as there are problems with me passing on someone else's treatment info, but I'll think about it. But I'd suggest having a go with alternative therapies (although not homeopathy, in my view, as I don't believe it has much medicinal value).
keep in touch
i