Monday, December 13, 2010

And so the year ends - quite literally

December 30th is the one year mark for me. Who could have ever predicted a little dentist appointment to get a filling a year ago would have changed my life so dramatically, and made 2010 a year for the history books. But, as I always say... it could be worse.

I will be offline for awhile- I need to have surgery for a separate issue- won't go into gruesome detail. I was fine before this year, now it seems when it rains, it pours. I wonder how much prescription drugs taken regularly over the course of this year for the neuropathy have to do with cysts forming elsewhere? Hmmm. Maybe none at all, just seems odd.

The Lyrica is how I keep the pain dialed down every day (through that, and making sure not to let my blood sugar drop, which makes the pain ramp up). But it does give me brain fog, which seems to be worsening, and blurrs my vision. It's a trade-off; until this nerve pain heals, or something else dramatically changes in my life, I don't know that I could give it up. I just try and push through the fog and focus; sometimes I do better than others.

I hope that the joy of family, friends, and fun at the holidays allows you to put your pain in the background for just a little while. I know it's hard. Don't let the stressful holiday season get to you, it's not worth it. Just enjoy the bit of happiness that you can gleen from every day, when you manage to forget your pain for a moment. To Imo, I expect you may have a newborn any day now, if I'm not mistaken? Would love to hear about it :) There is nothing like a baby to raise your spirits.

Wishing everyone good health, happiness, and wealth this holiday season.

With love,

Tuesday, November 30, 2010

If it's not one thing, it's another- how getting sick can make you feel better

I got a nasty intestinal virus over the weekend- and by nasty, I mean rushed to the emergency room nasty, anti-nausea meds via IV nasty, projectile vomiting nasty and I think you've already heard way more than you want to know.

My body was wracked with pain from the soles of my feet to my eyelids, but particular my lower back and thighs. In the midst of this 2 days of horror, I realized that my lingual nerve injury didn't bother me one bit. I didn't feel pain in my teeth, my tongue didn't burn, I could lie on my left side for the first time in a year... what the heck?

So of course the next thing I wondered was Holy Mother of God, how can I bottle this feeling (uhhh, minus the stomach flu symptoms). Alas...the fever broke, and slowly but surely, the neuropathic pain returned with its former vengeance.

Has anyone else seen this happen- you get sick and the lingual nerve pain subsides - it's like your body can only deal with one horrific thing at a time so it kind of shuts down and just focuses on the worst one til it can rid itself...then back to regularly scheduled programming. Sigh.

I remember this happening when my mother died virtually on my due date with my 2nd child. My mother was dying, my son was being could this happen at the same time? It was too much at once. And so, my body kind of just went into autopilot for the next few days, til I could lay my mother to rest. Then, the baby was born, a week late. The baby was huge and low, and supposed to be born early. But I somehow managed to hold off long enough to say goodbye to my mom, and not miss her funeral because I was delivering a child. Life is weird.

So, the rugburned/scraped along the sidewalk burn of the left side of the tongue is back, the deeeeeeep achiness in the upper left teeth is -hello!- stabbing me again all the way back to my jaw near the ear, and I'm even getting sharp pains in the temple again. Tragic that this is now what "normal" feels like.

Monday, November 22, 2010

Giving Thanks at 11 months

As the days grow shorter, and the temperatures turn colder, I approach the one year mark of my injury (Dec 30th, 2009 - "a day that will live in infamy"). I have an all-over, nondescript burning sensation most hours of the day. Yep, it's really annoying, and distracting. I have to plan for meetings or any time I'll be away from my purse for awhile, which contains my stash of gums and lozenges, but sticking gum in my pocket, and carrying water.

No longer does just the tip or edge of my tongue burn; it's more widespread all along the left half of the tongue. I still have pain when puting on sunglasses. I still cannot rest my chin in my hand. But I can do lots of things I couldn't do before, like go to restaurants (where hypersensitivity to noise used to kill me), and walk outside even when the wind is blowing (whereas I used to have to pull a hood over my left ear and mouth). I've not had a migraine headache since summertime. So there's definitely been progress.

I'm very encouraged reading that Kev has completely recovered! He is one for the record books, and I will be driving him crazy picking his brain to understand how he managed to finally beat this thing.

The simple answer is, there are no simple answers. This thing takes time - lots of time. And ppppp... patience...something I am NOT known for. I continue taking B vitamins - do they help? Who knows? Couldn't hurt. I am still on meds - couldn't survive without them. I have stopped asking "why me" and "when will I feel normal again", and started just living. I try to notice when the pain is lessened, feel grateful for those rare moments, and burn them into my memory cells, in the hopes they'll someday win out over the pain receptors still firing off.

My thoughts go out to each of you this Thanksgiving. I am so thankful to have this blog and grateful you take the time to read and share your thoughts with me. Have a wonderful holiday!

Saturday, November 6, 2010

Burning inside and out?

Here's an odd question. Ok, these are all odd questions, but here's the latest. Has anyone noticed their facial skin peeling? I noticed my chin peels about once/mo. for the past few months... for no real reason. It got me this nerve related, it's almost like it's burning my skin from the inside out.

I mention this because I recently came off of a particular bad spell of worse mouth pain, which has now settled a bit. The first quiet tongue day I'd had after about 2 weeks of fire, I noticed, again, the skin on my chin peeling, like from a windburn or sunburn. Only, I haven't been in the wind or sun to any real extent.

And this is like the 3rd time I've noticed this - then I put some aloe on and it's gone the next day. I don't have any dryness anywhere else on my body like on that part of my face.

Things that make you go "hmmm".

Sunday, October 17, 2010

Roll Call - Please check in and give your status

How are you doing: Judith, Jenny, Dean, and all the anonymous and infrequent contributors to this blog?
Kritty, Kev, Imogina and Pierre; always concerned about how you're coping and what advice you can give.

How are you doing, what are your symptoms at this point, and has anything helped?

Perhaps our little braintrust can help. I really do think, if nothing else, having a place you can vent about it helps release some of the energy and provide peace of mind that you really aren't alone in this struggle.

Be Well, Jane

Tuesday, September 28, 2010

At 9 months, pain spikes are less "spikey"

I'm finding less variation between good days and bad now. (They're all bad) Ok, not really...they're all...medium. The highs and lows are not as high, or as low.

When I was charting my pain a few months ago, well, the bad days were like skiing a double black diamond it's more like a blue run. Occasionally I'll even get an easy green and marvel at my good luck! And, by occasionally, I mean maybe once every 12 days. I attribute this improvement to the Lyrica.

Lyrica is helping to dull the pain in my face/upper teeth. I was RX'd 150mg/day, but since I am managing to cope at 100mg, I am holding there, hoping to do as little systemic damage to my internal organs as possible. I do notice blurred vision and vivid dreams (a known side effect of pregabalin and gabapentin), but consider those fairly minor side effects.

I don't know when I will feel like I can stop the meds. Not any time soon. Having been to all forms of medical experts and them all saying they can't find anything in my xrays, MRI's, etc, at this point I've resigned myself to just keep taking B vitamins, and hoping the nerve continues to repair itself in time.

I have had temporary crowns over my root canals for 6 months now, too scared to go back in and get permanent ones. No one's coming near these teeth. I haven't had a cleaning in a year, so I'm coming due for that, too. Yeah. Fat chance.

I feel pretty normal and not drugged. My heart is no longer racing nor do I feel faint like on the Pamelor (Nortriptilene).I'm not falling asleep sitting up as much. (And they think texting and driving is bad? Hah! Should see how it feels to drive on some of the drugs I've been prescribed. Not safe!!)

The tongue feels rugburned in a wide area most days; occassionally on a good/quiet day, it's just on the left tip. Klonopin puts the fire out, and, since this is an off-label use of an anxiety drug, I get the double benefit of reducing stress. Pain = stress = anxiety = more pain = more anxiety, and so the cycle goes. Sucking on a Klonopin for a minute, then spitting out, helps a lot, though it does make me sleepy. Wish I could suck on them all day, but I can't. I'd be like Rumplestilskin!

Has anyone found that any foods in particular help or hurt the burning?

Monday, September 13, 2010

Surgical options explored... and ignored

On NPR this morning they did a story about a blind man who'd had surgery to restore his eyesight. He was born sighted, but lost his site in a chemical accident at age 3. The result was, his brain was so trained NOT to see images, after 40 years, that even though the surgery was considered a success, and has worked for others... he still can't see.

Retain the brain. That's the key. But, his doctors didn't anticipate this, nor know how to resolve it.

That's what concerns me about those of us who've been living with this a long time. We have to stop the pain cycle to train the brain that pain is not normal. So if that means having to be on meds, so be it.

I'm hoping that this is the key to teaching my brain that my own body's signals are false, or at least to overlook them.

Living on Lyrica and Klonopin, with the occasional hydrocodone, is not a way I ever imagined my life. Ever. I used to avoid even taking Advil - now, I just laugh at them, (aren't they cute?) they're about as effective as a Pez would be to me.

I've heard about surgeries, laser treatments, etc... but every doctor since Pogrel says the results are poor and they don't recommend it for me. It is only recommended for those who have complete numbness. Even then, those folks might end up like me, with hypersensitivity and pain, once the nerve is reconstructed and sending signals again.

I have requested from my doctors thin slice MRI's, MRA's, etc... and been told there's really no point. I'd have to keep searching for new Neurologists to find someone to order and read one, and considering how expensive it is, even with insurance, that's just not going to happen. When I was originally misdiagnosed with trigeminal neuralgia, here are some of the treatments I'd come across; some of these are also being talked about for lingual and alveolar nerve injuries. But I keep being told "no".
  • Microvascular decompression - this is brain surgery to release pressure on nerve or blood vessels, they often insert a teflon pad to relieve compression
  • Gamma knife - less dangerous, not an actual knife. Gamma rays are used to shrink the blood vessels surrounding the nerve. Biggest problem is probably that it's not always effective.
  • facial nerve blocks - seem to give temporary relief, most insurance won't cover
  • novacaine at ganglion nerve - temporary
  • radiofrequency or glycerin rhizotomy- I think they identify nerves sending pain signals and cut them. Interesting thing here is that it targets nerves which, due to not receiving GABA, generate unusual electrical activity. Since I'm taking pregabalin, anything with GABA gets my attention; however, having my nerves permanently severed does not.
  • Motor Cortex Stimulation- they put electrodes in your head
Obviously, my notes here are very unscientific, just gathered from stories I've seen on the web. Anyone who can add medical information or who happens to know anything about these please feel free to comment.

I hope I'm not still blogging about this when I'm old and gray.

Friday, September 10, 2010

The effect of emotions on pain

An observation. Yesterday was one of those rare days when I was so happy I didn't even notice any pain, though I was talking almost non-stop. I met with an old flame for lunch, and we had such a great time, I experienced a sense of euphoria and adrenaline for 4 hours straight as we ate and later walked around talking. However, not long after I left that environment, the pain resumed it's regularly scheduled annoyance.

I've been in happy moods before, but the pain still broke through. I usually have to put some medicine in my mouth to dull the burning, or can't completely smile on my left side because it aches. But this time - not at all.

Why do I feel it during the mundane, day to day stuff like working, driving, and caring for children, but not when my body and mind are chemically elated to a degree that overrides the pain and- most of all- can this scientifically cure us of our pain somehow?

So here is my question for those who may be in the medical field: how do we produce this artificially? Medical marijuana? I have no clue. I can't even pretend to be a scientist. I am merely pondering questions here since the wonderful world of the Internet allows me to do so with no one stopping me.

I also notice when crying the pain to be worse. But yesterday, I had a moment where I got pretty weepy as we shared some memories that weren't so happy (close relatives dying) but even then, no pain. That "euphoric" feeling still dominated over any other. If I could bottle it, trust me, I would!!

I imagine that's why they use antidepressants for nerve pain. We aren't necessarily depressed, but creating that little "high" just enough to better our mood a little, somehow dampens the pain. Doesn't eliminate it, just hides it for awhile.

Scientists are not sure how Pregabalin (Lyrica) works, other than it stabilizes electrical activity in the brain, keeping it from becoming overstimulated. Funny thing is, my brain was clearly very stimulated yesterday during our little nostalgia trip - trying to recall events and people, and the excitement of seeing someone you hadn't seen since you're a kid. Possibly even falling in love again. But love alone can't be enough to stop pain, lots of people are in love but still grapple with pain every day.

Still looking for that magic answer that will put a stop to the pain and let me go back to living life normally again.

Saturday, September 4, 2010

Getting off all meds was an epic failure :(

I've seen so many doctors and no one has had the perfect answer for me, so I'm learning as I go. I really have had to experiment. After a few days without Neurontin, the pain was just too much, very distracting and makes me not a nice person.

Since I am in this apparently for the long haul, I really have to find something to help cope with the pain.

So this week:
1. Eliminated Neurontin as Doc recommended. Hmmm pain seems worse.
2. Decided to give Lyrica another shot, but I realized the trick is to take the 50 mg at bedtime, so I don't get that loopy thing where I can't drive, etc... then I take 25 mg pills in the daytime and am titrating up. You really do build a tolerance this way. Recommended dose is 150 mg/day; I'm at 100 now.
3. Because they are capsules, I had to figure out on my own how to manage the dosing schedule, and ask my Dr for two Rxs: one for 25 mg and one for 50 mg. So far, I do think I'm feeling some reduced pain in my teeth and face. (I still have to keep a Klonopin on my tongue when the burning gets to be too much, maybe 1-2x/day.)

Downsides: Lyrica is expensive - over $2/pill with insurance and there's no generic; fortunately I was given samples at the Dr's office that will last me about a month. I'm still hoping by the time I reach a year the pain will be reduced to the point I no longer need this. But no one can predict.

I've read bad things about Lyrica, but then again have read bad things about every medication, including Neurontin. I'm noticing daily headaches lately - not bad ones - not like migraines or anything. Can't say yet if it is related to the Lyrica.

A physician friend tells me he has patients who love Lyrica, and some who hate it. He tries Neurontin first, though thinks Lyrica probably works better - but it's still new on the market, no one really know a lot about it. I'm just hoping this new med continues to help make the pain tolerable without me growing a third arm or something. ;-) His opinion on Lyrica is there are risks and benefits with every medication, you just have to decide if the benefits outweigh the risks.

Hope everyone is doing well and enjoying the holiday weekend...I am spending it with family, which is always a great distraction.

Update - the headaches are gone, and so is the rain we've been having - probably more related to weather than Lyrica. The tongue still burns as the day wears on, but if I could just keep the normal tongue of mornings all through the day I'd be soooo happy. What is the secret?

Monday, August 30, 2010

Now it's your turn

This blog is one of the few places I can talk about my injury, and have been doing so for 4 months now. It may seem that all I do is discuss meds, pain, and dentistry all day long, but in real life, actually, I rarely do. Do you?

In fact, I haven't even given my family the url to this blog. I can't discuss my pain at work or risk losing my (temp) job. I can't tell someone I don't know well (like a date), "hey guess what, I'm suffering a long-term injury and am almost always in pain!". I don't want to be a burden to anyone or seem like a freak. They've all got enough going on in their lives. Some are less sympathetic than others. They just don't know how to deal with it.

Everyone just assumes I'm doing fine now, because I've stopped talking about it so much, but this is still a daily issue for me. Every frickin' day. I don't want to sound like a whiner - I can't stand people who complain all the time - and really, how many times can they hear the same thing when they don't know how to respond or make it better?

So, I don't talk to anyone about it, really, except for the readers of this blog. So I want to thank you for reading, I want to encourage you to share your stories, because we all need an outlet or will slowly go crazy. Suffering in silence is no way to live; not for me, anyway.

Maybe you'd just like to get it off you chest how unfair it is that this happened to you, or ask a question, or maybe someone can help with a symptom you're suffering, or vice-versa. This is not a one-way street. Please add comment and include few details of how your injury happened and WHEN, and what you are going through now. Your age, country/state/province, would be helpful, too. There are different treatments and levels of understanding in the medical communities elsewhere. I know that here, in Florida, it's like living in a virtual medical knowledge desert.

Are you working? Are you medicated? Are you completely healed? Are you married/who is your support network? Have you been back to the dentist? Let me know.

If you click on "About Me" off to the right of this section, you'll see more of my background details. This might be a good place to comment and add "about you". Or you can just comment below this post. If you are concerned about revealing your identity (for reasons mentioned above), you can always post as Anonymous.

I also need to attract more readers to this blog...anyone with blogging experience who has tips on how to do that, please advise. There are more people suffering out there, and the more we know, the better chance we have of finding a solution for all of us.

Be well. Have a great day. Know that you can always come here to blow off steam and no one will fault you for it or think you're a "whiner" ;-)


Saturday, August 28, 2010

The pain roller coaster

I have never been a fan of roller coasters, though I love amusement parks in general. Well I'm at the top of the pain cycle roller coaster vs. the bottom this week, and let's just say I'm not raising my arms with glee. So far the meds experiment is a bit of a disappointment- I've weaned down to 300 mg gabapentin a day (basically nothing) and been on anti-inflammatory Mobic 3 days (think: Naproxen, without the nausea)- I'm hurting more since giving up Neruontin after some pretty quiet days prior, but it could just be coincidence.

I'll give it a few more days, when I'm due for some more quiet ones; if they don't come, and the pain continues to build, I'll ramp up the Neurontin again. I was Rx'ed hydrocodone for pain but I take it by half in such small doses, it just gives a little relief and good mood for maybe 2 hrs at at time. I still have to turn to ever-expanding assorted varieties of gums, lozenges, dry mouthwash and, ultimately sucking on Klonopin, to put out the fire in my mouth all day long.

Something unusual and perhaps worth mentioning: the way the pain feels now vs. a few months ago differs. Earlier in this illness, pain jumped around more from one place to another, (ear, throat, head, teeth) now it's kind of all over. The sore cheek/buccal muscle/root canal pain, achey front teeth, sensitivity to sound, touchy temple, and burning tongue seem to now travel together and be related, hurting on the same days. Just milder all over and worse all over, depending on the time of day and the day in general.

At really bad moments I still apply lidocaine/oragel topically, down to 2-3x/wk from 1-2x/DAY, when I could barely speak without slurring like a drunk person due to the razor-like pain in my tongue. (So there is hope for you newbies!)

Unfortunately, after this amount of time, everything I've read indicates that some level of pain is going to be permanent for me. We'll see at the one year mark in December; it's incrementally less now (if you count increments in milenniums) but I haven't given up hope the trend continues.

The megadosing on Vitamin C has been tough because I need to mix the powder with orange juice with is very acidic for my tongue. So I've been sporadic in that. I can now tolerate the coldness of smoothies, so I try and get extra vitamins from my local Jamba Juice store when possible.

I have spoken with several Neurologists who were recommended by friends; problem is, no one has the foggiest what I am talking about with the Lingual Nerve. With the thousands of nerves in our bodies, seems med schools overlook that one. You'd think someone would come up with a continuing ed class to cover this problem.

(Trying to figure out how to add a site traffic checker but the widget failed. Trying again below. For anyone not bored enough to have left already!)

Saturday, August 21, 2010

Where does it hurt?

Curious to know where everyone else feels their pain - the same, or different area (Kritty mentioned the throat). For me, pain has is far worse in the central part of the trigeminal nerve, the maxillary branch (deep in the nerves of the upper teeth and extending into temple), than another other branch, with the addition of the burning tongue (lingual nerve) on the left side.

I feel like kind of like I've been hit just below my left cheek with an aluminum bat, and they stitched me up, but the bruising inside never went away. Random online research makes it sound kind of like the pain in my cheek is NICO, (Neuralgia-inducing Cavitational Osteonecrosis) caused by long-term infection and root canals in the area, or is this normal pain that accompanies everyone's lingual nerve injury? The dental docs just scratch their heads and say they don't see anything.

I'm supposed to return to the orofacial pain clinic for the handheld wand up against my upper gum where the pain is worst - it emits a tingling sensation which can be adjusted so that it's effective without being painful. A few of these treatments are supposed to help - I'm told it's helped others. It did seem to reduce pain for a few days following the original session. Anyone know anything about this treatment? It's $100 a visit - that's like $10/minute!

This is, again, being done at the only teaching hospital for Dentistry in my area. I have found no place else that understands my situation - I may as well be speaking Russian.

I've been doing more research on meds, as I am going to see the pain doc this week and the gabapentin just ain't cuttin' it at 500mg/day. Another $165 for the pain doc visit. Ka-ching.

The choice seems to be antidepressant or antiseizure.
the list seems endless, all with various side effects.

What has/hasn't worked for YOU?

Tuesday, August 17, 2010


In response to Anonymous who replied to my previous post re: Pepper, etc., (I'm still having blogger problems, it wipes out any comment I try to post, yet lets me create regular posts. Bizarre. And very infuriating.)

Injury occurred prior to RCs when injection hit lingual nerve during fillings procedure; but having 2 RC's on same side soon after probably further irritated things. The area of the root canals is exactly where I still have the most pain (other than burning tongue) so your overfill theory may lead to something...what is overfill, exactly? How would I know if I had it and it was pressing on a nerve?

I have not found any practitioner who has any familiarity with my oral pain issue, other than the guy who I'm seeing that insists that Neurontin is the way to go, how is it known not to help oral pain? I'd be interested in seeing that research! God knows I don't need any more more drugs that don't even help. He originally had me on Nortriptiline which was a nightmare for me

Thanks for your input - tell me more!***********************

So if Neurontin x3 didn't work for you, what does? Are you, like many, finding relief with Topamax?

I do think Lyrica could help, it just scares me. I's tough enough getting through a workday already.

I've seen 3 neurologists and not one has any other recommendation. I feel like they are so used to deal with elderly here with diabetic neuropathy (like in their feet) that Neruontin is just standard.

However, the guy I'm seeing is at a teaching university, which should be cutting edge.

My original injection was shocking in that it felt very deep and I could feel cold liquid running into me. Most injections barely scratch the surface, more like a pin prick- uncomfortable, but not big deal - this was very different. I complained to the dentist, he just shrugged it off, like I was a cry baby.

Monday, August 16, 2010

Pepper & more - Kev are you still out there?

Cayenne Pepper theory

I tried to ask Kev how brushing his tongue with cayenne pepper worked out, but his blog will no longer allow me to post comments. (I thought maybe the problem was on my side, but have tried on 2 different computers - maybe he's chosen to no longer accept comments, as there are no comments from anyone else, either.)

The reason I bring this up is that I came down with a very sore throat this week - mind you I haven't had a cold in 3 years but have been run down lately - and when I read online about magic cures for a sore throat, guess what they mentioned? Gargling with cayenne pepper. Hmmm.

I didn't even like spicy foods much before I got this injury, and now it's almost unthinkable. So all this talk of pepper scares me. But does it really work? I'd give anything to stop the BURNING TONGUE, as I'm sure most of you would too.

The pain all over

Regarding the "spread" of the pain, I find that I'm hypersensitive throughout the entire trigeminal branch now, whereas in the early days of this injury the pain seemed to "jump around" more and change each day. Even if I scratch an itch on my cheek or remove eye makeup, I feel pain underneath. It's like I've got a layer of pain under everything - that's the nerves, I guess.

I no longer take any anti-inflammatories and wonder if I should? Clearly, the entire area is still not settled. Someone told me I need to get my 2 root canals capped, because until I do, I'll still feel nerve pain through there...really? I thought the nerves in the teeth were removed and the crowns were just to protect them because root canals weaken the teeth, and you don't want to lose them altogether. Anyone know?

I do see a marked difference when I first wake up in a quiet tongue, whether in the morning or from a nap - the burning is always less then. I have actually begun napping in my car during the workday because A. I'm freakin' exhausted and medicated and B. it helps with the pain. Just one more way people are going to start thinking I really am insane...if only they knew the pain I was silently enduring...

Now up to 500mg gabapentin per day (2 morning, 2 night 1 midday). I've gained some weight and feel hungry all the time; just a heads up for those of you who struggle with weight gain. Try to keep fruit and proteins around vs. chips and candy, because you WILL be hungry.

I don't get the massive headaches I once did - that was Hell. But I also don't feel much improvement since I hit about 7 months and I am still always looking for ways to avoid becoming a "lifer" with this pain. I have a new boyfriend, and he keep the music so loud in his car I can't stand it. I'm sure he thinks I'm very strange that noise bothers me so much. I haven't yet told him I'm damaged goods - suffering from a longterm injury that may never heal. That's sexy, huh?

I can carefully sleep on my left side now, but if anyone hugs me on the left side, or touches anywhere from my left side of my chin to the left forehead, I can't help wincing (which isn't very nice for the person nice enough to show affection!). My incredible, loving, happy children know to hug mommy on the RIGHT side only! They are literally the oxygen that keeps me surviving. I'm sending one off to college today and you may as well take my right arm - that's how much I'll miss her. And she's only going 1 hour from home! (tears)

Reality check

At the same time, while I whine about my suffering, last night I went to dinner (which I can mostly now do if it's not crazy loud) and they wheeled in a girl on a breathing tube. That same day, I stood in line at Walmart worrying about money, the folks in front of me had to put back 5 items so they could just afford diapers. A friend just found out he has cancer somewhere in his abdomen. This is the kind of stuff that kicks me in the ass about feeling too sorry for myself. I hope it helps you, too.


Tuesday, August 10, 2010

Back online with updates and greetings

Hello all and thank you for your patience as I've grappled with my blogger issues. I still can't add comments to posts, but now can post original posts. Crazy, I know.

Dear Kev- how'd it go with the pepper treatment? Any luck?

Dear Anonymous @ 11 weeks - I hear ya. I feel at this point as though I've plateaued and there won't be any more improvement after 8 months.

But you are still early on, relatively, in your healing after 11 weeks, and could still get slightly better. In all honesty I don't know if you'll ever be completely normal the way you used to be. I feel I won't.

re: depression, we've all been there; I hope following this blog helps to lighten your mood, there are some great people here with wonderful tips and suggestions. Hang in there - you are not alone! We get it!

I am still hoping someone will find this blog and post that they are *completely recovered* - how long it took, and what steps they took to get there. Meanwhile, if we keep putting our collective heads together, maybe we'll figure it out on our own.

Saw the neuro; again said topamax is really for migraines and wants to just increase the dosage of gabapentin and continue the clonazepam for burning. Result has been more sleepiness (though I can function) and still have burning. Super nice guy, but geez, is that the best he can do?!

He also used the TENS unit on my gums and I must say I do feel some relief in my cheek, though my teeth still ache and tongue always burns. He wants me to do a series of these treatments in next few weeks (not covered by insurance of course). I mentioned kritty's remark that seemed to spread the pain and make things worse, he just said "that shouldn't happen".

Dear Kristin - When landing in Chicago I was fine once on the ground. When back in Florida I had no landing trouble at all, really. Maybe it's the thin air we have at sea level.

Dear kritty- if you like write me at for private messaging - your input is invaluable. I could use a referral to someone close to me. I'm obviously not getting the ultimate care available at present.

How's everyone doing this week? I am popping those lozenges and gum like M'n'Ms to try and douse the flames in my mouth.

Friday, July 23, 2010


Well, I've had some good days recently (300 mg daily of Neurontin may be to credit for that) but the bad ones still occur, and the feeling of powerlessness really gets to me - it doesn't matter what important event I have for that day, I can't control when the pain will hit. This injury doesn't care if it is someone's birthday party, or an important job interview, or even my daughter's graduation. It just strikes without warning, and I can't will it away. In fact, it ironically seems to ramp up exactly on those occasions, as if it knows I've got something important I wanted to feel good for!

This always happens after several quieter days when I start to think I am finally recovering. Then, bam! The pain then reappears... kind of like something hot pressing deep into the nerves of my face from my left cheek to ear, from the inside of my mouth/head outward. I know that probably doesn't make sense to anyone but I am always struggling for ways to describe accurately the feeling.

The toughest time I've had recently has to do with air pressure - once last week during a plane flight descent for landing, when I was really suffering and could do little about it, and again today, with the barometric pressure dropping due to tropical storm Bonnie (I live in Florida).

The good news is, the good days are better than they used to be.

I am sorry to see Kev's blog end, and hope I can take the baton adequately.

Monday, July 12, 2010

An open question for Topamax users

Spoke to my orafacial pain Doc today, who said he didn't think Topamax would help, though I've heard from several of you that you DID find relief so I want to pursue this. His questions were what does it help with, specifically -
neuropathic pain? Tongue burning? Face hurting? Teeth aching? migraine headaches? etc... any info you can provide? You can also email me privately if you choose.

Any help you can give would be much appreciated so I can get him to write a script and give it a try. The gabapentin seems to have very little side effect, as I'm taking a very low dose (200mg/day) but I still am in a good deal of pain every single day, and want to explore anything that's been working for others!

In terms of drug interactions, I still use Clonazepam for the burning tongue but spit it out vs. swallowing it for a more topical than systemic effect. I am meeting with the dentist who did this to me today. I'm now at seven months post-injury and counting. How's everybody else doing?


Monday, July 5, 2010

Giving Neurontin another shot

I weaned off the Nortriptilene (Pamelor) because, although it helped me sleep, it was making me feel dizzy, my heart race, and a few times I felt very close to passing out.

I still had that old prescription for Neurontin (Gabapentin) sitting around, which is known to help nerve pain, so I thought I'd give it a try and see if it made a difference. I do think it has helped. The problem is that it becomes less effective the more you take it, so you have to keep increasing the the dosage.

I took 100mg @ bed time for the last 4 days, then today had to add a second 100mg around 3pm when I just couldn't deal with that deep burning feeling like someone's boring into the nerves of my upper jaw, where the root canals were done (which possibly further upset the already inflammed nerve).

I would give anything just to be able to lie on my left side, chew on my left side, rest my hand on my chin, wash my hair without any sensitivity, and feel 100% normal again, but the teeth pains don't seem to be improving any more. I've plateaued.

Burning has increased after a few day quieter days, too, but the weather front that just came through could definitely be a factor. I'm just glad I am feeling better than I was during months 1-5 of this injury. I continue taking the B complex daily and C powder almost every day, though it's tart - I mix with watered down OJ or cranberry juice so as not to irritate the burning tongue; little tough to take so I have with breakfast. And of course clonazepam usually twice a day for the burning tongue.

How's everyone else doing?

Wednesday, June 30, 2010

We now have a Facebook page

Please add Jane Fisher - Lingual Nerve Injury to your friends - have found some new people this way who may have information to share or be helped by this blog.

Friday, June 25, 2010

Foods that help stop the burning

Sometimes you crave certain foods when you are feeling down (comfort foods like ice cream) or dehydrated (grapes, watermelon) or pregnant (um, I have no explanation for that one!), I have noticed I feel regular cravings for foods that temporarily cure the burn.

Interestingly, these are some of the same things that are recommended to stop the burning of hot peppers or spicy food. The capsaicin in peppers is an alkaline oil, and needs to be counteracted to stop burning. Foods that do actually help temporarily stop the burn without the need for pharmaceutical intervention include:

Sugars- Bananas, apple slices, marshmallows (the big kind), dairy products
Fats - spoonful of peanut butter, cheese, cheesecake and chocolate milk (a 2-for-1, sugar and fat) Well, I never promised you'd lose weight with this injury.
Starches & Carbohydrates - bread, tortillas, rice, mashed potatoes, cornbread
Acids - lemons, lemonade, oranges- while these may burn themselves,, their interaction with spicy foods cools the burn

What makes it worse: alcohol, soda pop, salty chips, dry mouth, very cold water.

I read on another site about the brave guy who ate hot peppers for two weeks straight and states he's finally cured himself of the burning. I am way too much of a wimp to make that attempt, but if it has worked for you, I'd love to hear about it.

I hear there are also capsaicin "candies". Oh, joy, I can't imagine the feeling of sucking on that all day. The theory with this therapy is that the use of these hotly spiced candies depletes the substance P, which is the neurotransmitter for pain. The active ingredient is cayenne pepper. Curiously, capsaicin is also thought to be an anti-inflammatory. Hmmm.

Testing this theory (which you know I can't resist,) I had tortilla soup today and, I must say, afterwards felt a markedly reduced pain sensation of the tongue for a little while. Wonder if I have the cojones to do this every day for 2 weeks, and if it will "cure" me? Stay tuned....

Tuesday, June 15, 2010

Newly injured or not, I feel your pain

I have so much empathy for some of those who've been suffering with this injury for years. I cannot even fathom going through this for another month, much less years.

While this horrible pain has caused immeasurable disruption to my life, I sometimes feel I really have no right to be complaining "only" 6 months after my injury, when there are others out there who've been suffering (often in silence) for years.

I do all this complaining, whining and "kvetching" not just to vent, blow off steam, and commiserate with my fellow sufferers, but also to hopefully exchange positive advice on finding relief.

My brain is in a constant battle with itself these days; I spend half the time feeling hopelessly, "I just want to feel normal again!" and the other half thinking how lucky I am just to be alive, and to quit complaining already. It's not cancer, after all. It could be worse. But that doesn't mean it doesn't still suck.
Can you relate?

Some of the really long-term sufferers can be found on World Law Direct, if you are morbidly interested in hearing their stories. I am. I am always interested in anyone's story, especially those who've eventually recovered. It gives me hope, that as I sit here typing, my mouth in "flames", the side of my face and my temple still aching, I know that someday, this WILL get better.

Saturday, June 12, 2010

At 6 months, starting to feel like a "lifer"

After reading that if you aren't healed in 3 months, chances of this being permanent are likely, I must say at this point, I am one of those victims, but I still hope in time things fade more, as they have for others. Everyone feels pain differently though. Everyone's story is slightly different, and each, so unfortunate. It really helps to hear from others who've been though this, for me at least.

Funny thing about this injury, it is maddening trying to figure it out. On the one hand, I still have pain from simple things like putting on sunglasses - when the frame crosses over my left temple, I wince- still, 6 months after injury. But the chewing on broken glass feeling subsided long ago, never to return, however was replaced by other annoying symptoms - all less painful, but painful nonetheless.

The stinging now is sometimes at the left tip of tongue, but generally it's the overall rugburn more all over the middle of the tongue. The teeth ache and sometimes smiling still hurts.

It is hard to go about life cheerfully and I can't help but look around sometimes at all these people who don't realize I"m in pain, but I can't keeping whining about it all the time. I think, how lucky they are to lead these "normal" lives without their mouth on fire all the time...they have no idea...

I already have low blood sugar issues, so notice it is a really BAD IDEA to go hungry. But, I hate to eat when my mouth is quiet in the morning. So I put it off...until I'm ravenous, and the pain fires up right along with the hunger. Sugar may be a culprit, but not nearly so much as STRESS. That has to be the #1 thing. I feel the least pain when I'm so sleepy I'm nearly dozing off - the nerves must just be so relaxed at that point.

I am STILL having pain in my root canals months later, and was told by my latest endodontist this is not normal, so I am going back to the endo who did the first root canal next week. I was told not to have crowns put on til everything "settles"...LOL...can they possibly understand how "unsettled" my mouth is, and has been, for months on end? I don't know when I will ever be able to finish this dental work, and am just trying to be very careful not to chew anything sticky or have anything on the left side of my mouth.

I still haven't found a job, in spite of many close calls and promised offers. My daughter is starting college, so I've been wrapped up in those events, and the stress of having your firstborn and best friend leave home is overwhelming. Trying to act happy and positive around her, but sometimes I can't hide the sadness.

Keeping busy is a distraction, but I am still having to take at least one vicodin to get through the day or I am a bitch on wheels, because of the pain. I'm in big trouble as it seems that prescription runs out sooner than I will recover, and doctors don't like to write prescriptions for narcotics.

I was told by yet another attorney that this is the risk you take any time you get an injection, and though she greatly sympathizes with me (she really does), you cannot sue for malpractice just because the dentist is a jerk, who wouldn't admit he'd caused the injury, nor treat it, in fact, may have even sent me on a wild goosechase trying to keep me of his back, until I realized it was his fault. I plan to call him and meet with him, if he'll agree to it, to show him the stack of medical bills and 2 gallon sized bag of meds, so that he should know what he did. I don't know why, I just think it will make me feel better. By the same token, that meeting will be so stressful for me, I just know it will be a horrible day of burning tongue. And so it goes...

I'm taking a little Advil as the endo recommended it as anti-inflamatory, as well as daily doses of vitamin B in the methyl form (because it absorbs better but, of course, is more expensive than the cyan version). That attorney I mentioned spoke with a dentist friend of hers, who knew of lingual nerve injuries, but had only caused 2 in his 40 year career, and he recommended going back on the B for nerve healing. I don't see any change yet. If I could afford the laser, I'd go back to that, because I do think it was helping.

Wednesday, June 2, 2010

Eeeerily quiet, but why? Just freakin weird.

Wish I could say "hallelujah, I've found the answer!" But no. Just the least amount of pain I've had, maybe since this thing started; I was probably a 4-5 in pain all day, except a few choice moments when I talked too long on the phone and had to grab water several times. I've taken a couple ibuprofen the last few days, other than that, I'm taking a fish oil pill now daily plus the traumeel and lymphomycite or whatever the heck it's called - it's for healing. Haven't had laser in weeks or acupuncture in months. Had a glass of watered-down wine last night with dinner.

When I found myself getting stressed out talking to the unemployment bureau, yet again, about why they still won't pay me any benefits, the tongue started to burn - I consciously tried to calm myself down by reminding myself that I'm so much better now. It's like a mantra I repeat when the burn gets going.

With all due respect to the Beatles..."it's getting better all the time...better/better/ better" Though, truthfully, it's hard to convince myself of that more often than not. I've been feeling that I've plateaued, and will be like this, with those evil bad days coming back every few days, forever. But today was a good day. A really good day. How to bottle it - wish I knew.

And now, for the TMI portion of the blog, (fair warning for those that don't want to know), last time I had my period I got a wicked migraine and was waiting for it to happen again this month. Instead, it arrives and I get a day of greatly reduced pain. No clue why. But I will continue analyzing the cause and effect to see if I can determine how we can all live at no more than this level of pain always.

Sunday, May 30, 2010

And back to burning again...

The pattern continues of 2-3 good days, 2-3 bad -- repeat. Very predictable, though I naively still keep expecting the good days to stay good and not revert back. Call it naivete or call it positive thinking...I haven't given up hope. I can't.

The various aches and pains about the left side of my face and head are getting better, and I can again do little things like apply makeup over my cheek and bend over to put a towel on my head after the shower, with only a little pain. Still have the lingering soreness of the new root canals, but I've even started carefully chewing on the left side at times - very carefully.

The tongue burning still after nearly 6 months drives me crazy because it is so constantly distracting, and nothing seems to make it go away on the bad days. Makes me feel I have no control over this thing. Blogging about it is a good release, that is one thing I can control. To me, this is really important, or else it all starts to feel out of control, scary, and hopeless. That's not a good place to be.

Thursday, May 27, 2010


...I'm almost afraid to say this out loud, I don't want to jinx it, but as soon as the uncontrollable fire came yesterday, it went away today. I woke up today feeling surprisingly the day progressed, still good...hmmmm...even on into evening and - wow, this is really an improvement! Back down to rugburned feeling.

Like, I didn't even get relief yesterday after two whole 500 mg vicodin, .75 Klonopin, and a Cosmo cocktail for good measure (the last one suggested by my son, who I think was going to punch me if I said one more time "my mouth is on fire!" I don't drink much these days.) But today - I didn't have to take any of that; I did, because I am testing a theory. I took .25 Klonopin 3x spread out throughout the day, to see if having a stead stream of it would make a difference. But I couldn't tell because I was already having a good day anyway. Won't I feel silly if all this analysis and experimentation is a waste of time, because none of it has any effect anyway.

I did take 2 ibuprofen both yesterday and today for inflammation, which I don't usually take, as well as extra doses of the two homoepathic meds, plus brought back the Alipoic acid/acetyle pill (one), and added one Omega 3 to the mix. Too soon to tell if any of that could really have quenched the fire so randomly.

I am thinking less and less that particular foods (sugar) has anything to do with it, because on good day I can get away with a lot; on a bad day, NOTHING gives me relief, no matter how bland. But I do think caffeine, being a stimulant, is an obvious nerve trigger, so I do avoid that. Other than that, heck if I know!

Up too late again tonight, but at least this time it's not from the pain. 1/2 an ambien is in order.

Tuesday, May 25, 2010

The burn returns

I'm on fire today, sadly, after some of the best days I'd had since the beginning of this thing. Just another reminder that this isn't nearly over, and may never be. Unfortunately, my discomfort extends beyond the tongue (burning) to teeth and even cheek still aching. I realize that for most people, the tongue seems to be the predominant problem, I wish it was my only one... it is definitely the most unnerving!! The fact my symptoms are so widespread does make me worry more that the trigeminal nerve has been affected, and honestly, no one knows what lies ahead if that is the case.

I have slacked off on the B vitamins and acetyl Lcarnitine as I'm just plain tired after swallowing so many pills in the last 140 days, and stopped the cold laser treatments due to finances. I also haven't done acupuncture in a month, because the relief is temporary and insurance does not cover. I did start taking Omega 3 today but that is one big a** pill to swallow. Haven't had a chance but want to follow up on kritty's recommendation on mega dosing with vitamin C powder, just haven't known where to start, perhaps GNC or the Vitamin Store??

Seems the meds aren't even working at this point, the only real solution is topical benzocaine or Oragel several times daily. Passing this on to those who, like me, may be at their wits end when nothing else seems to work. I'm back to having trouble sleeping because I can't shut the fire off and my mind races.
Suggestions always welcome.

Monday, May 24, 2010

Curiouser and curiouser

To quote from Alice in Wonderland, who I must say I feel scarily related to these days,
"Curiouser and curiouser!” Cried Alice (she was so much surprised)....."And she went on planning to herself how she would manage it."

Like Alice, I'm at a loss for the right words, and wondering how to manage things.Today the feeling is one I can't quite describe, except to say it feels like my mouth is...freezer burned?!

It's as though I've been pressing my teeth into something ice cold all day long, and the entire mouth from tongue to the roof freezer burn, if there is such a thing. Even chewing on the right side hurts today and my injury is on the left. Hmmm.

Good ol' clonazepan doesn't help at all with this stinging. So the pain, annoyingly constant, and none of my usual remedies worked. I need some new magic tricks for this new kind of pain! It's so distracting, probably because I can get a handle in it - that old control freak thing again.

As those who follow the blog may know, I had initial work on 2 new root canals done recently, only now they aren't so fresh and new, as I've been avoiding dental work like the plague. One has had a "temporary" crown on it since about February (supposed to be on for 2-3 weeks). The other was a re-do of an old root canal - that one still has the initial filler they put in your tooth before the gutcha percha cement type stuff. I have an appointment to finish out that one next week.

So I've been walking around in limbo like this with lots of unfinished business going on in my mouth for months.

What concerns me, for those of you who've got knowledge of root canals, is that those teeth still hurt when I touch them. Even if I just press gently with my tongue. And of course biting down is a very bad idea. Since they've removed the nerves in these teeth, shouldn't I feel nothing by now????

That's the bad part, now, the good:

As opposed to weeks past, I can happily say my left ear, while still highly sensitive, at least no longer seems to give me those stabbing earaches. Out in public I find myself having to dodge stereo speakers. I'm like a grandmother because I constantly am bothered by piped in music in any public place. Is it just me, or is it really TOO LOUD in here?!

I'm taking the fact that my symptoms are changing to be a sign of progress. No, they haven't subsided, but they are...different.
Yet someone reminded me recently that, if you haven't recovered by 3 months, you are quite likely looking at permanent damage.

I, being the stubborn, rebellious sort, refuse to believe that I am just screwed up for life, and am still holding out hope that this is a trend overall, and my symptoms, at 5 months, are ....evolving. I hope the old (crunching glass, etc.) symptoms that have been replaced by new ones aren't just on vacation, til they return with a vengeance, as so often happens

Monday, May 17, 2010

The calm after the storm

The fiery burning of three days ago has quieted down. In fact, I can say that I have felt the best I've felt in the past 4 months these past two days. Am I cured? Hell no! But, I have had a few headache-free days which is critical - those headaches are killer. My throat is mostly fine, my ear is down to probably a 2 in pain, I also have more energy.

The worst still continues to be the "scraped along the sidewalk" feeling on top of my tongue which increases later in the day-evening.

But considering all of these pains were in the 8-9 range for a very long time, I have to say improvement has been made, though slow. I wonder how much is the Pamelor finally kicking in, and how much is just the time factor, with the nerve healing finally coming around. Then there's the homeopathic meds and the light therapy, could that be the key?

The Agatha Christie in me won't stop trying to figure it out. I want to be able to solve this puzzle so no one ever has to suffer like this again. It scares the crap out of me taking my kids to the dentist now, and everyone I know has been warned to not take their dental visits so lightly anymore.

When I think back to the early days of this condition, which I know some don't like to do, it actually makes me feel better to see how far I've come. Those first 3 months were horrific: feeling like my face/cheek/teeth/tongue were in a vice grip, migraines daily, couldn't tolerate any light or sound, literally had to write notes to my kids most nights because I was in so much pain my tongue couldn't take it any more...that was hell on earth.

That is the reason for this blog. With inspiration from Kevin, Imogina,, scalpel and sword, and others....I just knew I had to tell my story, in the hopes it might give others who are in the early stages hope and reassurance that things do get better. I just hope one day this story has a happy ending where I announce "guess what - I'm healed! I'm 100% back to normal" I don't see that happening any time soon, but this injury has changed me; I don't have such high expectations any more and have stopped saying "why me".

The positive result has been that I look around and see so much more clearly how much everyone is dealing with some kind of pain; be it emotional, physical, or both. At some time in your life, everyone suffers. And, eventually, we get better, we move on, until the next thing happens. But then we are that much better prepared to deal with it, because now we know we can, we have - and we lived to tell the story.

Many have asked about suing the guy who did this to me. I will just say that the thought has crossed my mind, and is being investigated. However, that won't make my pain go away, and the chances of winning might not be good. The stress of a case is the worst thing, of course, for me in my present condition. So, we'll see. I'd be very interested in hearing about any lingual nerve cases that have been successful for the plaintiff. It's not the amount of the settlement that matters so much as the fact that someone got away with this.

One dentist said to me "it's a risk you take, every time you get an injection". OK, my answer to that is this: every time I cross the street, I take a risk, a risk that a car might hit me. If someone does hit me, even by accident, then flees the scene, accepting no liability - it's called a hit and run, and it's illegal. What my dentist did to me feels like a hit and run. He doesn't admit any blame, has offered no assistance, and in fact, may have even intentionally misled me by telling me I had BMS and "allergies", hoping that I'd be one of the many who recovers rapidly (in a few weeks) and I'd just go away; he'd never have to hear about it again. Only, I'm not most people, and that's not what happened.

My dentist trained at NYU - that is no rinkydink school; there isn't a chance he doesn't know about lingual nerve injuries..this makes me think he was just dodging me every time I called his office. I may never know, and it's not productive to focus on it so much of the time, so I try to avoid it. Still, getting him to at least cover my medical bills would sure feel like justice had been done.

Off to take my meds!

Saturday, May 15, 2010

Firing off again

Welcome kritty and thanks so much for your contributions - you have really done your homework! Nice to have you on-board, and hoping you find relief SOON.

Yesterday was lots of stress, and the burn just seemed to build all day long, even after midnight was still raging.

Sometimes morning can be so bad, I'm taking vicodin before even getting out of bed, but then end up with a surprisingly mellow evening. But sometimes, a quiet morning turns into fiery afternoon and evening, lingering right up to bedtime. Lately, on these days, no matter what I do, I can't seem to get any real relief for any length of time.

Does anyone else have the pale, swollen tongue, with teeth marks? I've had several practictioners remark on my tongue, and when I wake it feels like I've been pressing it against my teeth all night long. I asked for a bite guard, but was told to try the Pamelor first and see if it helps.

I am typically anti-meds and this feels like just another case of a dentist turning someone into a junkie. We shall see...I am going to try kritty's suggestions, including the mega-dosing of vitamin C (although when I'd mention this to homeopathic/acupuncture practitioners they poo-pooed it) I am having to increase my dose of vicodin. It can be addictive, and causes side effects like constipation but other than that, pretty mild stuff, as it's mostly acetominophen (Tylenol) in very high dosage.

I observed again the burning may be made worse by sugar and talking (went to a house party), and I had an alcoholic drink. Coincidence? Maybe.

I am wondering why the Pamelor isn't helping yet, but maybe it just takes more time to build up in my system. I'm now on 2/night. It is making my heart beat fast, I feel depressed and listless in the morning. I looked it up and found it's supposed to have no real effect for 14 days but. I'm hoping if I stick with it, things will improve.

I'm still taking homeopathic meds Traumeel and lymphomyosol (sp?)and on my last 15 mg Mobic as antinflammatory. Sick of spending money on and taking meds!!

Hope everyone has a pain-free day.

Wednesday, May 12, 2010

Odd feelings and new meds

Now I understand, for the first time, what that "rug burned" feeling is on the tongue that I've heard others describe. The tongue feels sort of scraped, and hot, all over, without the sharp clamping or chewing razor blades feeling of the first few months. I am confused about what to do, as the lozenges and gum don't seem to be helping for this type of feeling. My teeth hurt too, as usual, where the root canals were done. With these two symptoms in hand, I met with my Dr. at the orofacial pain clinic - I hadn't been back there in a month because I frankly just coudn't afford it anymore, though they were wonderful and so supportive. Really the only medical professionals anywhere I've found that I trust.

My dr. put me on Pamelor (aka Nortryptilene) a tricyclic antidepresant which I started last night. I'm very against antidepressants, as I can't tolerate the side effects, and I don't want to just be hooked on something to forever numb the pain; if I'm taking something, I want it to be because it helps the pain go AWAY, not just distract me from it.

However from what I'm told, there's no medication that actually does that; the best we can do is to try to make the pain less noticeable while we wait. And wait. And wait. For that day to come when we feel completely normal again.

Medication regime is to start with one 10mg pill at bedtime, working up to 4/night eventually. There are supposedly few drug interactions or side effects at this level, which I was told is below the actual level I'd be taking if it were for actual depression. I'm skeptical as always, trying to remain hopeful as I can be. Anyone taking Pamelor with success?

If you are a lightweight, like me, oversensitive to every little thing, you worry even more about new meds. And since this injury started and I am taking very small doses of Klonopin still, I'm constantly falling asleep at the drop of a hat. For instance, every day around 1pm I get a wicked headache and the ONLY way to cure it is to lie down. Sitting up becomes unbearable. Now, in the old days, I could lie down but never have fallen asleep - but now, I'm out in minutes, and fear oversleeping an appointment or picking up the kids at school. How on earth am I going to work in an office in this condition?

Waiting -wishing-wondering - hoping.

Monday, May 10, 2010

Surprisingly better, and theories as to why

OK, I have NO logical explanation for this, but just so you know, out of the blue, I felt better again today. Yay! This makes no sense, as I had an important job interview that meant a long drive, stress, and talking for 2 hrs straight. Should have been a really bad day, painwise. Did it hurt? Yeah, of course. It always hurts! But, compared to the last week, so much less.

I do think a positive attitude makes a difference. Yesterday I spent mother's day with my sister and her family and honestly, just getting out of these 4 walls and having fun with the kids was enough to help me feel better. Thinking about the injury never actually goes away...probably never 30 mins goes by that I'm either feeling the pain - or noticing that I'm not feeling the pain.

Looking forward to the day I stop thinking about it all the time! That's why keeping busy is good - busy with productive things that make you happy.

When all else fails, and you are just like WTF, why me, when will it ever end, wah wah wah (cue the violins)... I recommend the ridiculously hilarious LOL Cat videos - look them up on YouTube. One of the few things that can get me laughing out loud in my current condition. I don't know why, I just love those funny captions and cat photos.
Let me know what you think!

Thank you to those of you who have starting contributing to the blog - sorry you are here, but so glad you are, too! All of us folks with this crazy burning tongue thing gotta stick together. You are not alone - it is real - a real pain in the a** is what it is - it is a constant distraction and that fact that it is "invisible" to others sometimes only makes it worse. But there ARE people out here who do understand, and do care.

Saturday, May 8, 2010

More coping tips

Here are some of the many ways I've adapted - I don't even think about these that much anymore, they've just become a part of daily life. A lot of this will help those with BMS (burning mouth syndrome) as well.

I use an extra soft baby toothbrush instead of a regular adult version.
I use Biotene dry mouth toothpaste, just about the mildest paste you can use.
I rinse with Biotene dry mouth rinse after most meals; just feels good to remove remnants of food and "neutralize" the mouth again.
I constantly keep room temp water with me - in the car, on the night stand, in my briefcase - everywhere.
For some reason, weak tea often irritates my tongue less than just plain water.

Stick with soft, bland foods, and focus on protein; you'll need it to keep your strength when you don't feel like eating much.
Best bets: oatmeal, eggs, cream of wheat, chicken, turkey burgers, baked beans, mashed potatoes, macaroni & cheese, soft breads like croissants, fruits, cottage cheese, overcooked veggies (soft enough to eat). I can eat Jello gelatin, but for some reason the pudding stings.

FOODS TO AVOID: chocolate, coffee, frozen drinks, fizzy soda pop, garlic, peppers, ice cream, bacon (too chewy- hurts my teeth), OJ, tomato sauce and spicy, salty, fried, or crunchy anything. Yogurt and smoothies bother me too. If you are a big Doritos or Fritos person, sorry Charlie, those are out (I'm not, but pita chips are a favorite - not good).

There are days I know I just have to push through this and say, the heck with it, I'm gonna eat a damn salad, even if I do have to cut it up in tiny little baby bites, and it takes me twice as long as everyone else at the table. I can tolerate Ranch dressing but balsamic vinegar is a killer for the tongue.

Most days, the best I can manage might be chicken noodle soup and mac 'n cheese. Some days my teeth hurt more, some days it's my throat, sometimes it's the tongue burning - the jaw, the head, the ear, etc.... As these change, the foods I can tolerate change too, depending.

What I have to remind myself of is that, as uncomfortable as I am now, I went through about 12 weeks when I couldn't even wash my hair or face without it hurting - this made for many, um, interesting looks. Applying makeup over the cheek area was impossible but it didn't matter, I wasn't going to wear any; I had no social life anyway; my ears and head couldn't stand any noise, couldn't drink alcohol due to the meds, couldn't talk without pain, and couldn't raise my voice above the noise in a restaurant. I still can't go to Costco - I don't know what it is about that florescent lighting and warehouse feeling, but it just makes my head feel like it's going to explode the minute I walk in.

It was too painful to pull my hair back in a ponytail for three solid months, but I can do it now if it's a loose ponytail. I love live music but that's out... just think how much money I'm saving on rock concerts.

These tiny accomplishments like being able to wash my hair again are easy to forget, and important to remember, when you're on the 118th day of pain, and it seems like you're getting nowhere.

Thursday, May 6, 2010

Burn, baby, burn

The tongue burning today is as bad as it has ever been. Reminds me of 2 months ago, before I even knew that I had a diagnosis of lingual nerve injury from a dentists's injection, and at the time I didn't have any meds to help. But now I do have meds, and even those didn't help: tonight not even clonazepan could stop the burning, nor salt water rinse, nor honey, nor OraGel, nor lozenges....nothing!!! Scary.

Possible cause is a perfect storm of weather (rainy), to much sugar (birthday cake, etc.), too much talking (volunteered for school field trip today), getting my period...whatever the cause, this just plain sucks. Of course the teeth are aching as well, as always, that is a constant. But the tongue had gotten so much better, and this is a big setback that's a big worry and disappointment.

Probably not a good day for me to be posting on the blog because I don't have anything positive and uplifting to share. Hopefully the next few days will be dramatically better...

Tuesday, May 4, 2010

Afraid to eat

This is one of those days when I'm afraid to eat, and here's why.... When I woke this morning, I felt ok, but then after speaking with others in necessary conversations, the tongue started really stinging. As soon as I had a chance to take a break, I made some weak tea with honey. That was a big help - I also had a Bee M.D. honey throat drop. Even better. By 11am, I was basically pain-free. Wow! Problem was, I hadn't eaten anything yet, and was starving. It's the weirdest feeling - knowing you need to eat, but wanting to avoid it, because you don't want to change the temporary happy quiet of your tongue.

As it is, my menu choices are already extremely limited, and I'm already seriously underweight. Diagnostic testing at the orofacial pain clinic showed that I feel things twice as much on the left side of my mouth and face as on the right. So every taste, sensation, feeing - from the wind blowing to spicy, salty, caffeinated, or crunchy food - is like SUPER intense and hard to tolerate. Ice cream and smoothies are big favorites but hurt so much now, for some reason coldness is very irritating, so ice cream is out.

Every single meal has to be planned, thought out, bland and boring...add to this the difficulty chewing, and some of the meds I was put on killed my appetite. Put all of that together, and I find myself about 10 pounds shy of what would be considered a healthy weight.

I have been chewing on the right side only for 5 months now. Five months! I'm starting to wonder if my facial muscles are going to permanently change from this. I did notice my left side drooping 2 months ago, and asked the Doc, thankfully Bells Palsy was ruled out. But I started doing physical therapy for my buccal muscle of the cheek/face, and although it's uncomfortable, I think it's helped "reactivate" the left side of my face, muscle wise.

(Nerve wise there's already wayyyy too much activation going on!) So, I finally ate a sandwich and some cold slaw for lunch, but now, of course, the tongue is burning again. Sigh.

Monday, May 3, 2010

1 step forward, 2 steps back

OVERCONFIDENCE - Just when I started getting a little too smug about the good progress I was making in my recovery, I took a turn for the worse yesterday. I don't know why, but I've had a definite setback...tongue has been really on fire for two days straight, worse than it's been in awhile, and today I'm getting those old migraine-type symptoms that I haven't been bothered by in several weeks.

Today I'm extremely, overly sensitive to light and sound (keep having to ask my daughter not to talk so loudly - she thinks I'm psycho - when the phone rings, the noise makes me JUMP!). My head really hurts (only on the left side), my teeth feel like a drill is boring into them, even my throat (which has been completely fine for 2 weeks) is burning on the left side, about the middle of my neck.

Obviously, normal daily activities are more challenging on days like this, even looking at the computer screen is tough, and my temper is short with the kids because I don't feel well.

IS THIS A CRUEL JOKE? I'd had a few good days in a row, giving me a false sense of hope. I thought I was closer to 100% recovery than I really am. I thought I was seeing the light at the end of the tunnel. I guess I knew I was due for a setback, but was hoping maybe, just maybe, I'd seen the last of those wicked flare-ups. Wrong!!

This new pain spike could be related to my monthly cycle maybe? That's all I can think of, (hope that's not TMI) since I haven't really altered my regime of medications and vitamins, the weather is warm and sunny, and I haven't had that much more stress, except perhaps for finances, as the co$t of this injury just continues to add up and the lack of paychecks is making my checking account run down....

Adding insult to the injury is the fact that I had so many straight weeks of extreme pain and daily doctor visits that I lost a well-paying long-term contract job (which suddenly became short term after my dentist did a number on me) now, I'm paying the consequences of the lingual nerve injury while being unemployed. It feels like my medical bills are this huge mountain, and I am trying to climb in high heels. The irony is, before this, I never got sick... I literally haven't had even a head cold in 2 years...

Because I have such excellent health typically, I am lucky to maintain health insurance on my own (since I'm unemployed) but the catch is, that insurance plan has a $2500 deductible. Who could have predicted a simple dental appointment could have turned my medical, financial, career and social life upside down to such an extent?!

After having 4 cold laser light treatments, 2 days apart each, I did have a big gap of 5 days. I went today, and will go again in 4 days. Soon I'll have to stop those, too, though, too much money going out with none coming in.

UNCERTAINTY- the problem with this injury is that few people have heard of it, the pain is a constant reminder that you haven't recovered, there is no magical "cure" other than time, and you never really know if you will continue getting better, or if you'll be one of the reported 15% who never actually does recover. On bad days, it's easy to feel like that 15%. On good days, there's more optimism. Right now I have to focus on the fact that what goes up, must come if the pain is spiking now, that means it will come down in a day or two. Let's hope!

Tuesday, April 27, 2010

Charting your progress

One of the best ideas I ever came across was keeping a pain chart to track your recovery. The reason this is so helpful is because your definition of this is "the worst it's ever been" may change over time. It is VERY easy, on a bad day or pain flare-up, to be terrified, to think "this will never go away!", or "I'm getting worse, not better!", and to overlook the fact that, as bad as the pain is now, maybe it used to be worse. Which should in some way make you feel better about those invisible nails being driven into your tongue. LOL.

OK, I'm not gonna sugarcoat it - there are going to be really bad days, or pain spikes as I call them... but over time, the peaks will very gradually be lower. I don't know if they ever go away completely. I'll let you know when and if it happens for me.

So here's what I did: I developed a very simplistic graph, an X,Y axis, with 0-10 (indicating pain level) going up the side and the date going across below. Every day I indicate the pain level I am experiencing. I have this diagram of mountains that have gone from looking like the Himalayas to the Rockies to lower, gentler mountains, like let's say the Appalachians...for what it's worth, this gives me peace of mind and reassurance that, even though it doesn't feel like it, things ARE improving. It just takes for freakin' ever....

You'd be surprised how something so silly can really help. When I am having a bad day now, I look back and realize how much better "bad" is than it used to be, (how much higher the number was on the pain scale) and it gives me hope that this trend will continue. Though, as I've said before, this recovery is not a linear thing...there are many ups and downs, one step forward two steps back, and many days you'll wonder if it will ever get better. It will.

It's also useful to keep track of what may have prompted the pain result each day, especially if it's a particularly good - or bad- day.... Loud? lots of talking? Stressful day? Rainy? Cold? Windy? New meds, vitamins, or treatments? What you ate, drank? etc... Over time, you should be trending downward, and your spikes shouldn't be as high.

Things have also changed for me, whereas at the beginning I had a clamped feeling on the left side of my tongue, and my left cheek felt constant pressure, as if someone was punching it, and the tongue burned from tip to back along the left edge... now the pain on the tongue is more widespread - all over- and not as severe most days. All of my original symptoms have lessened, while some new ones have appeared. But the new ones aren't as high on the pain scale. Still annoying as crap, but historically speaking, not the worst it's been.

If you try all the vitamins, meds, and alternative therapies I have recommended and don't notice any discernible improvement after 60-90 days, you need to see a specialist, ASAP. The longer you wait, the worse it is, because your brain learns to live with this neuropathy, and comes to think of the pain as normal, instead of no pain being "normal".

Meanwhile, get yourself some Oragel, some gum, and whatever else works for you, to help you cope during the tough times. You will get through this. Hang in there.

Slow Progress is still progress, nonetheless...right?

In order to give encouragement to others, I wanted to report that I've had a few "good" days in a row. Good is a relative term, when you haven't felt normal for a single day in over 4 months, though I wake each morning hoping I'll be back to my old self. (Of course, I also wake each day hoping I'll win the lottery, and that hasn't happened, either!) But things could be worse - people in Haiti woke to found buildings on top of them; people in Mississippi had tornadoes destroy everything they own; people in the middle east get blown up by car bombs; people with cancer are struggling just to stay alive. Things could always be worse. This is vital to keep in mind when you start feeling sorry for yourself.

Saturday was not a good day; I was in a social situation where I had to pretend to be "normal" all day long. I managed to eventually find something on the menu that I could eat (that wouldn't sting my tongue), and sneak into the bathroom to apply oragel to to the tongue as needed, plus quietly chew some berry-flavored gum, which helps the burning. I was able to not seem like a total whack job...but by that evening, I was in pain. I had plans to attend a quiet dinner party with friends (she promised it would be quiet, because she knows how painful it is for me to deal with any noise at all). I had to bail out at the last minute, as I so often have to do, which I hate.

With this injury and its constant pain reminder, I find you have to really pick and choose what is worth the effort and what is not.
>Being able to feel good enough that I can play with my kids and act reasonably cheerful - high priority. Going to a party where I only know 2 people - low priority.
>Avoiding social situations when I have an interview the next day and need to tap into my reserves for strength - high priority.
Finding work that pays well and will allow me to still go to Dr. appts- high priority.
>Listing to live music, formerly one of my favorite things to do - not even an option any longer.
And so it goes.

So, on Saturday, I fell asleep for a nap, and when I woke, my pain meds had worn off, and "hello, agony, my old friend" - I had that horrible feeling of my teeth being held in an industrial-strength vice grip, to the point I just couldn't imagine trying to smile and be pleasant for even 10 minutes with a bunch of strangers.

Napping is something I have never been able to easily do in my 46 years on this planet. But now? I'm down for the count instantly - sitting up - no problem. At a movie - guaranteed. Watching TV in a room full of people - yep, that too. Not sure why this injury is so exhausting, but it may be the effort I expend trying to hide it, or overcome it, that is really what's taxing. I also don't sleep well at night - I can't get comfortable, as I am trying all night to avoid turning on my left side, which is my natural way to sleep.

I haven't been on vacation in forever...even if I could afford it (after this injury and the resulting constant Dr visits and the expensive tests they ordered caused me to take so much time off that I lost my job, and I'm already over $10k in medical bills thus far) I still don't feel up to it. I've become quite the hermit, and I used to be on the go constantly.

I'm being pressured to go to Chicago next month and just can't wrap my brain around it. The thought of the stress and discomfort of a plane flight, in my unpredictable condition (will my head/ear/teeth feel like they're going to burst with that air pressure? I have enough trouble already on days the barometer drops when a weather front is approaching!)

Everything in my life revolves around the injury, the pain, and my ability to control it and stay on task. But I hold out hope that I'll feel better then. There's always hope. There has to be.

Sunday, April 25, 2010

Coping with the Pain - Meds and Treatments

Disclaimer - I am not a medical professional, just sharing personal experience and other info picked up along the way.

Everyone I have spoken with agrees that the pain is least upon waking in the morning. The key here, is the nerves being completely at rest. Therefore the goal for pain relief is to be as calm, or as I call it, as "zen" as possible - to the extent that is possible in our modern lives! If only I could sleep all day every day, I'd feel very little pain....but that is not possible.

If your nerve branch is injured, you may find the pain moves around. My doctor compared nerve healing to a squirrel jumping from branch to branch of a tree - when the squirrel jumps, all the branches shake (all the nerves are affected), therefore, you feel pain in sometimes odd places you wouldn't expect. Like the teeth, or the cheek, throat, or ear. So, sometimes you need to take a systemic, or global, approach to pain management.

I have had pains in all of these areas, it varies by the day, or sometimes even sometimes by the hour. Some days my throat burns (only on the left side) especially if I am straining to talk, such as in a restaurant. Typically in my case, it's the teeth, tongue and cheek. For awhile the headaches were truly debilitating, but those have lessened. Now, the teeth on the left side of my mouth feel like they are in an ice bath - that's the only way I can think of to describe it - doesn't that sound delightful? Oh, it is, trust me. Teeth in a vice-grip is a feeling I've also heard people complain about - yeah, it's kind of like that.

Steroids - if you have just been injured, a course of steriods such as Prednisone is typically recommended, but unless used within the first 2-3 weeks of injury, you are S.O.L. I was not diagnosed in time (my dentist blew me off, telling me I just had "sensitive teeth" or "allergies"), so that window is now closed for me. I didn't figure out (on my own) what I had until 10 weeks post injury. I was tested for everything under the sun by numerous doctors, including neurologists at the Cleveland Clinic, but no one ever had a diagnosis, much less suggested injury from dental injection, though I kept saying "but this all started with a dental visit!". Ask your dentist or orofacial pain specialist.

Clonazepan - For the fastest relief of acute burning tongue, the best thing is usually clonazepan (Klonopin). This is a small yellow tablet - you allow to dissolve on the area of burning in the mouth. Then, either you spit it out or swallow it, depending on your Drs orders. It may make you sleepy, so I take 1/2 tablet at a time, scattered several hours apart throughout the day so I can function. This is a benzodiazipene so be aware of the addictive properties, and read up on any med before taking.

I was using 1/2 tab around 2-4x/day. But, as you will see, the nature of recovery is not a linear thing - you will have a few good days then pain spikes for some reason. Stress is a big factor, but not the only one. On the days I have "flare-ups", I increase the dosage of meds accordingly. But then I am in a fog and need a nap!

On a really good day, I only needed it once or twice, usually before a meeting, and at bedtime. Four years after my injury, I barely ever use them, but they're good to have on hand. I may take a 1/2 tab when I have a pain spike that's distracting, maybe twice a week.

Other topical remedies - Oragel, or topical lidocaine or benzocaine. Tastes nasty, but gives immediate relief. The blessed numbness is fleeting but allows you to at least speak for an important meeting or be able to play with your kids, not to mention keep you from blowing your brains out when you don't think you can take the pain any longer. Zero side effects. I carry it in my purse always, and wish someone had told me about this months ago. Recommended.

Anti-inflammatories. Because the nerves of the mouth are inflamed, you will continue having pain until they "settle". Naproxen is often prescribed. For me, this wasn't an option as it made me sick to my stomach. However, I have now been taking Mobic with virtually no side effects (ask for an Rx). In fact, I wish I could take more, but am being conservative and sticking to one 15mg pill per day. They are small and easy to swallow, taken with food, I had no stomach problems.

Anti-depressants or anti-seizure meds- again, to calm the nerves. These may in fact help, but in my case, I have found the side effects to be too great. I have been prescribed Nortriptilene, Lyrica, Zoloft, Elavil, and more...even if my stomach could tolerate it, I literally can't think straight on these meds, and feel like I've been hit by a truck, so work is out of the question, and there are withdrawal consequences. Some people even feel suicidal on some of these drugs, so please read all the warnings.

As for me, I felt disconnected, like I was watching myself in a movie. It just numbs you to life. But these do great things for some people. I tried Lyrica for 3 days; I will say it does help with the pain, as well as lift your mood, but I was, like, totally "baked" - stoned out of my mind - I couldn't drive or work under those conditions!
Gababentin (Neurontin, etc.) is used for nerve disorders such as trigeminal neuralgia and but again, you must consider a long list of side effects. Neurontin is pretty commonly prescribed for nerve injuries in other areas of the body, too. Eventually, I tried Cymbalta at different times of the day with limited success; I gave up after a few months. Hopefully your experience will be better than mine. ;)

Vitamins, Homeopathic, and Alternative therapies:
B vitamins are thought to help with nerve healing
C is always good for everything
A-lipoic acid is thought to help with burning
Acetyl L-Carnitine - another good one for nerves
Hypericum, a.k.a. St John's Wort - for nerve pain, also helps lighten your mood. Taken sublingually. Available at Whole Foods or Vitamin Shoppe, I took for about 3 weeks and it seemed mildly helpful, but not enough to continue when I'm already taking a boatload of other stuff.
Arnica - sublingually (dissolved under tongue) for general healing of any sort. I didn't really think this helped much and the little pellets just annoy my tongue when it is already hurting.
Traumeel - also to calm the nerves though typically used for joint pain for most people. 10 drops 3x/day. Did it help? Hard to say. Zero side effects.

I use Bee M.D. honey drops and Halls Breezes moisture drops to help with dry mouth and stinging, in an attempt to hold off longer between doses of Klonopin. Chewing gum helps, too, even if you just let it rest in your mouth, because chewing often hurts- pina colada and berry flavor seem to help most for me. Stock up on this stuff.

But wait, there's more! I have undergone cold laser and light therapy, taken tons of vitamins, alpha lipoic acid, L-carnitine, and 7 sessions of acupuncture. Prior to this, I had never tried acupuncture; I will say that, though it's a funky kind of procedure, for some reason having needles stuck in you does allow you to relax for awhile, and did help with my headaches. Unfortunately, the results are not long-lasting. But it'll get you through those really tough days.

Exercise is recommended if you can tolerate it, but I must admit, I've spent many, many days barely able to get out of bed. I used to walk 1 mile every day pre-injury; I remember trying to walk about 2 months ago and not even making it past 3 houses on my street, I had to turn around and come home. Now I can make it about 3/4 mile on a good day. Running, or anything aerobic is not possible; the jostling of my head up and down is too painful. Even things that should be so easy, can hurt, when I lower my face down for yoga or pushups, the blood runs to my head and owwww! But blood flow is an important component of any recovery. If you can't exercise, try simple stretching, just make it so you head is lowered no further than your waist.

I used to love to ski, but now I can't tolerate the cold weather - my teeth are throbbing.

Alcohol/Liquor - I have mixed feelings about this one. Many people say a beer or glass of wine helps them relax, therefore relaxing the nerves...but alcohol gives a burning sensation, and everything is stinging already, so not sure if the trade-off is worth it. Though who wouldn't love an excuse to just drink all day ;-) But I seem to notice alcohol makes my teeth throb more. And, now that I have blood sugar issues (unrelated to LND) my drinking has been severely curtailed to just special occasions.

Opiates- not recommended for anyone with family history of addiction problems. I used to take small doses of Vicodin, and eventually switched to Oxycodone, as there is nothing else that really works for the pain in the teeth. I actually break the smallest dose in half, so I can get pain relief but stay awake.

These are controlled substances which you will only be able to get refills for with regular monthly visits to a pain management doctor. So, you'll pay for the visit, pay for the prescription, and have to deal with getting time off work every couple of weeks - doctors in the U.S. are limited to only  prescribe a 30-day quantity. You'll get used to it and may need to increase dosage over time... though not necessarily addiction, you can form a strong dependency. But, there's really nothing else that I find works on this particular kind of pain. It's a trade-off.

Stopping the meds
Just not possible for me yet. To this day I am in pain every day, on a 1-10 scale, 1 being barely noticeable and 10 being excruciating/can't think of anything but stopping the pain, most days now are around a 5-6, as opposed to the 9s originally. But there are brief flare-ups in the 8-range, even after all this time.

My face aches, my teeth hurt, my tongue burns, I'm still very disturbed by any noise and cannot hold a phone to my left ear. I can't rest my chin on my hand. I avoid talking, singing, and going to restaurants or parties, loud TVs, children, video games, dancing, etc... I recently bought ear plugs but found they really weren't much help. Sleep is an issue of course. Every time the weather changes, things worsen. It is a chronic, ongoing situation, but it IS improving, just at a snail's pace.

Surgery - For some people, there is actually something pressing on the nerve, or scar tissue from another procedure, that is causing the disturbance. If the nerve is actually severed, and you're completely numb, this may warrant surgery. If you do opt to have surgery, it is said that best results occur if this is scheduled within the first 6 months after injury. However, keep in mind that surgery is serious business, and can cause other problems. In my case, I was told it could actually make things worse, (though I don't know how it could be worse) and was not recommended.

BTW, I am prone to sharing my own, very unscientific hypothoses, as there is very little research and most doctors and dentists look at me like I'm nuts when I mention "lingual nerve injury". But ask anyone who has it, it is quite real, and quite painful. Thanks to people recanting their painful stories online, that is the only thing that has helped explain what I'm going through, and saved my sanity many times. Please feel free to add your own comments, questions, and theories. Disclaimer: I am not a medical professional, this information is from personal experience, and gathered from other sites.

If you have found something that works for you, PLEASE share it comment is too silly or unimportant. You never know when you may be really helping someone.

Will provide more in future posts

Saturday, April 24, 2010

How a simple dentist appointment can change your life

On Dec 30, 2009 I went for a routine dental visit to have two fillings done. I left with a puzzling injury I'd never heard of, which would end up causing me severe pain all over my face, tongue, mouth, and throat, in addition to migraine headaches and earaches, cost me over $10k in medical bills, and cause me to lose my job. It completely obliterated my social life and changed an active, happy, healthy single mom into a chronic pain sufferer who needs to be medicated to get through every day. I'm not the only person this has ever happened to, so I'm writing to share with others, and vice versa. While I may seem down about it (it's hard not to be) I'm really doing much better - trying to stay positive and focus on things that make me happy :)

I didn't KNOW I had a lingual nerve injury for a long time - no one ever told me. I just knew my mouth burnt like heck, to the point where even talking was excruciating, and I was unquenchably thirsty, starting the day after a routine dental visit. Ten weeks later, after my dentist had twice blown me off saying I just had "sensitive teeth" or "allergies", and 5 doctors failed to diagnose me, including neurologists at the Cleveland Clinic, I finally figured it out on my own, through numerous hours spent online researching my symptoms and learning more than I ever want to know about dental anatomy.

I have no medical background whatsoever, I just cared more than they did, and had more urgency because I was in terrible pain. I've attached a link to the Wiki page that illustrates what a lingual nerve is as part of the trigeminal nerve branch...(click the headline of this post for the link).

My Lingual Nerve injury was caused by a "needle stick" - the dentist hit a nerve during a simple anesthesia injection. I do remember just about jumping out of the chair when I felt that injection and signaling to him that I was in pain (which he ignored). Starting the next day, New Year's, I just knew my tongue was on fire, and I couldn't drink enough water, no matter how much. Then the migraines and teeth throbbing started, and it all went downhill from there. I began an expensive round-robin being bounced around to doctors all over town trying to figure out what was wrong with me. No one ever did.

After much internet research, I diagnosed myself with lingual nerve injury, which was later confirmed by the head of the orofacial pain clinic at a nearby University. My dentist still has never admitted to anything. And, by the way, during this time, I also had to endure 2 root canals that he'd missed, which also meant finding other doctors to perform these procedures, hoping that they wouldn't make things even worse.

Burning Mouth Syndrome has some similarities though it's different, but in fact, my dentist misdiagnosed me with BMS (even though I said, isn't odd it would start the very day after my dental visit? And only hurt on ONE SIDE?). He didn't want to admit any liability, but if he had treated me immediately, I might have had a much swifter, more successful recovery. My guess is some people who've been told they have BMS could, like me, actually have a lingual or alveolar nerve injury, not BMS, and don't even realize it. Think about when your symptoms started (after dental work?) and whether it seems worse on one side than the other.

I'm told the odds of this injury happening are about 1 in 100; considering how many dental injections are done every day in the world, that doesn't sound so rare to me. There are many nerves running throughout our mouths that lead into the trigeminal nerve. Nerves branch out from there into most of your head, face, and of course the teeth, tongue and oral mucosa. This can cause:
  • burning tongue
  • throbbing, sensitive teeth (such as to wind blowing, or to cold)
  • feeling like the tongue is clamped
  • many people report "battery acid" or "crackling electrical" feeling on the tongue
  • numbness and/or loss of taste - or, just the opposite, hypersensitivity
  • chemical taste, "chewing tin foil" feeling
  • feeling like you've been punched in the cheek that doesn't go away
  • headaches
  • teeth feeling like they are "on ice" or tightly held by a vice-grip

  • burning throat (on one side only)
  • lingering numbness from novocaine
  • a bruised feeling in teeth, face, or neck (but only on one side)
  • and more
    (feel free to add your symptoms)

    It is thought that this is seriously underreported, so if you have suffered numbness or pain that lingers for weeks or more after a dental visit, please do post here. I've set it up so you can post anonymously if you so choose. Sometimes the Inferior Alveolar nerve is injured. Though some injuries happen from clumsy, imprecise injections with "novocaine" (aka lidocain, articane, septicane, carbocaine, etc...). my understanding is it may even more often happen when wisdom teeth are being extracted (on the bottom).

    If you are feeling burning pain on your tongue and teeth, gums or lining of the mouth and/or cheek, I am sorry for the pain that brought you here. There is already a board called Lingual Nerve Injury Forum, and also, which are quite good in their own right, however as usually happens with these things, posts begin to drop off as the injured recovers or just gets so sick and tired of being sick and tired after 6 months or more that he/she stops posting.

    That leaves those of us who are still suffering dangling and looking for hope elsewhere. So I decided to start my own blog. Since there are so few people who understand this crazy condition, I find great comfort in sharing notes and stories with others who are in the same boat, and want to keep it going. I welcome all of your posts and hope you will vigorously participate. Let's try to keep it nice here guys, we are here to support one another, goodness knows we are all dealing with enough pain already...

    I have been struggling with this injury for 4 months now. Some people are lucky; they have temporary numbness (parasthesia) or burning pain (dysesthesia) for just a few days or weeks. But for some, the pain just continues 24x7 for months on end - some even report still not feeling normal after many years. 
    Already I've made it through the worst part, when I wanted to end it all rather than go through another day of this Hell on earth. It is getting better, but I still never feel normal - not for one stinkin' day...Maybe for a few hours when I first wake up, til I start eating and talking.

    Since nerves heal exceedingly slowly (1mm per day is what I'm told) there is no telling just how long til you're better - assuming you are one of the 85% that makes a full recovery. If you see signs of recovery within the first few months, your chances of recovery are said to be better. 

    You can become very depressed and anti-social with this thing, since talking makes it much worse and many have even lost their jobs because of the pain, exhaustion and numerous doctor visits (me included). That's one of the things that makes a blog so critical - we may not be able to talk very well, but we can write, dammit!!

    If you've already recovered, or think you may have this injury but aren't sure, please share your story- including treatments you used and how long it took - whatever you think might help someone who is still in the trenches. Share with others and warn anyone who's going to the dentist.

    This injury can happen any time a dentist or oral surgeon doesn't take proper care. Everyone's anatomy is different, so the nerves aren't always in exactly the same place, but dentists know this, and are taught in dental school how to handle this and to react when a patient complains because something may have occurred to injure the nerve. However, in my case, my appointment was on the last day of the year, and it was a packed house, with everyone trying to get their dental work done before the new insurance deductible started for 2010. The dentist rushed the procedure and accidentally injured me; but worst of all was that he ignored my complaints afterward and all my pleading for help with the pain for weeks afterward. I learned what a crazy and debilitating condition lingual nerve injury actually is. Many other innocent and trusting dental patients have been injured - let's hear YOUR story. 

    UPDATE- I've now been writing this blog now for over 3 years and there have been many tips, updates, and contributions from others who share a similar fate; you can link to and browse those additional articles on the right hand side of this page.  We also have a Facebook page, the address of which is mentioned in some of my later posts (2011-2012). Please feel free to comment here and send friend requests on FB.