Botox Treatment for Facial Pain

So along the many paths you can take on the road to recovery, I've recently wandered down another one- Botox injections. No, I'm not getting a little nip/tuck. I'd heard that Botox can be used for facial pain.

THE BACKSTORY:  My orofacial pain doc recommended Botox early in 2013, but it took me over 6 months to actually go through with it.

Part of my hesitation was that he said Botox could make your cheeks look more hollow - if you have a round face or a few extra pounds, this might be a very desirable side effect! I, however, have very well defined cheekbones and lost a great deal of weight due to stress plus, now that I'm getting older, my face has thinned dramatically. You're going to hate me for this, but, I literally tried to put on a few pounds in preparation for the injections. (My apologies to those who struggle to lose weight; it's in the genes.)

Anyway, I wasn't so sure I wanted to risk changing my appearance, nor to have toxin willingly injected into my face.

So I did my usual research, consulting "Dr. Google," and some of my Facebook friends. Sandy M, in particular mentioned that she'd done very well with the Botox (Thanks, Sandy!). So just a speedy 2 months and 3 cancelled appointments later, I finally mustered the bravery to have the injections yesterday.

Just for context, I was expecting Botox to help with my facial pain - if it could eliminate the tongue tingling too, that'd be a bonus! The pain developed from me tensing/clenching my face unconsciously, as a reaction to the protracted pain of the throbbing teeth and burning tongue. This created a perfect storm of tension in my face that has made the masseter muscle hard as a rock instead of pliable. The primary purpose of the masseter is for chewing. Here's a fun image.

The "medial pterygoid" is where I have chronic pain - it feels like pressure- like someone is pressing down their knuckle very, very hard on that spot, 24x7. Pain radiates to my ear, so that I can't sleep on my left side, rest my head in my hands, or hold a telephone to that side.

When I decide to live on the edge and eat something crunchy or chewy (for that matter, any food not suitable for babies and grandmas,) I am left with even more achiness for days afterward.

Because this is all in close proximity to the lingual and thus trigeminal nerve, it's hard say which came first, the chicken or the inflamed nerve egg but, voila, I now have chronic facial pain. Did I mention how much fun this is?

THE PROCEDURE: There is no prep, no numbing creme or anything, they just go for it: stick, stick, stick, you're done. It was painful for maybe 60 seconds as the Botox went in, and for 30 minutes after I was  sore, but no pain.  (They did not inject in my forehead, unfortunately, so I look just as old as before LOL!)

The neurologist stuck me at the trigger points on cheek in front of the ear. No bleeding, no marks, very small needle.

I think the whole procedure took about a minute, if you don't count all the chit-chat that preceeded it (my doc has a fabulously charming assistant, and I have the overwhelming desire to strike up conversation with anyone to help distract me from matters at hand!)

THE COST - I had to first visit the neurologist ($50 co-pay) for evaluation. His office submitted the request to my insurance company, and after a few weeks they approved coverage. So I'm just paying a $50 co-pay for every Botox visit going forward.

THE RESULT: I'd love to say that, with the Botox, I suddenly am pain-free and look like a Supermodel...but no such luck!

But seriously, the good news is, I look exactly the same...though I realize this could change over time as it takes a few weeks to really settle in. We shall see. I will post again after the toxin has had a chance to really do its stuff.

The pain reduction was noticeable for the first 24 hours. However, I made steak stir-fry for dinner, complete with crunchy veggies. (sigh) Silly, silly girl. Now I'm hurting again.

I don't jump/wince as much when touching the left side of my face and head as I once did, though. I'd say about a 30% improvement on Day 2. From what I hear, pain may lessen more over the course of weeks and months, til the botox finally wears off, and you need the shots again. As for the tongue, hmmm...no real change at this time.

Will post again in a few weeks with an update.

4 years and 22,500 page views later

Without any advertising or promotion, this blog has attracted a sizeable audience...nearly 23,000 page views of the home page alone, and spawned 2 Facebook groups - and yet, this injury is supposedly a highly random "one in a million" occurrence.
Every day in every dental office somewhere, a patient walks in fine, and walks out with nerve damage. It's happening in the US, in the UK, and Australia, so you're not safe just because you live in a highly developed, English-speaking country.

Dentists and oral surgeons either act like this isn't that big a deal, you'll get over it, or worse, deny any culpability or feign ignorance (like my dentist - did I mention he attended NYU? Do we really believe they taught nothing about lingual and aveolar nerves there?). Some posters here report that their dentists actually think "it's a good thing" to hit the nerve. What's good about it, I'm still waiting to find out...

The dental industry seemingly runs amuck without any training on the injuries they are causing. I find that really hard to believe. However, a search of the ADA.org website (American Dental Association) for "lingual nerve" had only 9 results, none of which provide much depth in this area, and all of which were from 2010-present.

Does this indicate the problem is increasing in recent years and, if so, why? As painful as it has been for me to deal with, how excruciating would it be to watch your child go through this, and be unable to do anything to help them?

I can't do it alone, but with your help, we can take action so that this doesn't happen to our children. I'm asking everyone to help me get some attention for this cause.

I'm just a girl who started a blog, that I'm happy ended up helping lots of people. But I have no idea how to take it to the next level. If you (or someone you know) has any experience with the media, with proposing bills to Congress, advocacy, law, petition signing, non-profits, campaigning, fundraising for school, even just asking for the help you need...please inbox me at our Facebook page or respond below with your email address. You can find me on FB as Jane Fisher.

I have committed to keep this blog going to help others; if it's helped you, I'm asking for you to give back.
Thank you!
xo Jane

A must-read from the National Institutes of Health

After my own lingual nerve injury, my life has changed. As a mother, I am torn on whether to allow my children to get their wisdom teeth extracted. My daughter's dentist has been saying for 2 years now that it "must" be done...my daughter seen what I have gone through, but still feels obligated by what her Dentist has instructed her. I mean, aren't we all supposed to follow doctor's orders?
Now, read this:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1963310/

The evidence is compelling that prophylactic extraction of third molars is a significant public health hazard. It is a silent epidemic of iatrogenic injury that warrants avoidance of the extraction of any third molar in the absence of a pathologic condition or a specific problem.

...When fully formed, the roots frequently lie close to the right and left mandibular nerves, which run along the jaw beneath or between the roots. The risk of permanent paresthesia following extraction of a mesioangular impaction is as high as 6.8%, much higher than for other types of unerupted or impacted teeth. More than 95% of these teeth will never cause any problem. ...would continue to erupt into normal position in the mouth if left alone. There can be no excuse for tolerating so many unnecessary extractions on millions of unsuspecting and misled people and putting them at risk of so much iatrogenic nerve injury.

Quote: The British National Institute for Clinical Excellence is unequivocal in its recommendation, adopted by the National Health Service: “The practice of prophylactic removal of pathology-free impacted third molars should be discontinued. . . . There is no reliable evidence to support a health benefit to patients from the prophylactic removal of pathology-free impacted teeth. The conditions for which extraction is justified include nonrestorable dental caries, pulpal infection, cellulitis, recurrent pericoronitis, abscesses, cysts, and fractures.

As you know, my injury was not caused by wisdom teeth extraction, but by simple need stick during a cavity filling procedure. However, most LND is done during wisdom teeth removal. The dental industry is using procedures that put the public at risk, and no one is holding them accountable. The article even mentions that lawsuits are rarely won, because the patient supposedly "knows the risks" before work is started. I didn't know of any risk before I was injured. Did you? 

And even if you were fully informed, you take a risk doing lots of things - it's not like I signed a waiver and went bungee jumping...I was told I needed a filling done. That's it. Yet, I would lose in court if any lawyer would take my case (which they won't, I've been turned down by 6 of them).

If a patient takes all reasonable care, then trusts a medical practitioner who forces an unnecessary procedure or rushes the job, resulting in injury, someone should be responsible for permanently injuring a patient.
 
Write your lawmakers!

Feel free to cite this article in your emails and letters. (Note - citations were moved for this summary; full article, with citations, is available at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1963310/)

Um, I'd like to get off the ride now, please....

I so wanted to report that I was nearing recovery. I really did feel better for awhile. But, I always say it's a roller coaster and, after a particularly stressful month, including a business trip, a child's injury, financial strain, and such (you know, LIFE) I seem to have taken a big step back.

Combine that with a change in the weather; a big temperature and air pressure drop, which always makes things with nerve endings worse (as anyone with herniated discs or LND knows), and well, I'm hurting more and needing more to take the edge off after weaning myself down to less medication in January. Everything is amped up again. It continues to be a roller coaster .

So, I'm trying to remember to

1. Relax
2. Breathe deeply. Slowly. In.......out......
3. Remember, things could always be worse.
4. Don't tense your jaw, your neck, your shoulders.
5. Sit ergonomically if possible.
6. Get lots of sleep

I wish I had a magic wand and could say I'm cured, and I can cure you too! I can't, but I won't give up trying.

Lately I'm looking into a few things...in order of invasiveness and fear factor:

• RF procedure (radio frequency). Scary if you don't have the right practitioner.
• Nerve blocks
• "soft" laser

Anyone tried any of these things with success? My Dr wrote me a scrip for Botox injection to the face, but I'm afraid I'll end up paralyzed or something. Like I said, things can always be worse.

What's new in your world?

Write your Lawmakers!

http://www.congress.org/

Write your congressman! Hell, write the President. Our elected officials are supposed to be here to help us. Not only do we need to be more vocal about this injury and lack of dental regulation and enforcement, but there are major issues now in dispensing pain relief - painkillers have all but been terminated in states like Florida, which has unfortunately a lot of abusers who ruin the system for real people- people in legitimate pain, who follow doctors orders, dosing precisely as they are scheduled. 

FYI, If your doctor writes you a prescription to help with your nerve pain, you may not be able to get it filled anymore. CVS, Walgreens, Wal-Mart - all are telling people the drugs are no longer available.

One example is that Endo, the maker of painkillers such as Endocet (a substitute for Percocet) has been forced to cut manufacturing due to a DEA crackdown. This means people with legitimate pain, including people with cancer, fibromyalgia, nerve damage, and a host of other long term chronic pain are unable to get what they need.

This is no small thing. Statistics have shown that suicide rates are higher in those suffering long term, chronic illness and pain. 

First it's painkillers, what's next, antidepressants? Seizure meds? Thousands of others? This is NOT how you regulate drug usage; by cutting everyone off.

Please take some time out of your day to write your congressperson, let people know your story, we need to be heard en masse - trust me, politicians and regulators are NOT coming to this website, so they have no clue what we are going through - we need to reach out and make this issue public. Everyone of us. Please feel free to link to this blog in your letters. I can also be reached as Jane Fisher on Facebook.

Thank you.

Short cut for all the nerve-injured newbies

In a hurry and want to find out quickly all of the things I've tried for pain relief and nerve repair without having to read through 4 years worth of blog entries (fascinating, though they may be)?

Anyone new to the blog, or who hasn't done so yet, may want to check out the "About Me" page, where I provide a historical overview of all the meds and treatments tried on me since my original injury in December 2009.

There is no cure for this thing; there are just things you can do to try to feel better while you slowly recover. If you are newly injured, remember chances are still very good (80%) that you will heal in short order (a couple of weeks). If you're still in pain and/or numbness after several months, your nerve may have been more severed/nicked/bruised/cut and nerve regeneration will take longer. In some cases, nerve damage is permanent. To my knowledge, no one can predict whether you will heal completely or not. You just have to try to be positive while you wait it out and see.

For me, it's become a way of life. I have seen much improvement but it's been an incredibly slow process. The first few months I wanted to die. Literally. But now, 4 years later, the pain has been reduced to the point it's just a daily thing I have to deal with, like back pain from my herniated discs. Yes, it still hurts, I still have to take meds, I still have to take time off work for doctor appointments and I'm still looking for relief that I may not have discovered yet... but compared to the first year, not nearly as bad. I hope this helps give you encouragement at the darkest times.

Many of our friends on this blog have reported that the pain is excruciating, and described as a "10 out of 10", people are scared and want to know "when will I get better?" I don't have that answer, but I'm providing a running tally of what I've tried (with mixed success) so you can see if anything works for you. If you find something that works for you, please post about it and let others know!

Warmest Regards,
Jane

Burning reduced

Well, happy new year everyone. As I reach the year 4 mark, I still have headaches, bad cheek pain, very achey teeth, etc... but for whatever reason, since getting the facial injections (that wore off after 4 days) and having the bite splint refitted so I could actually wear it, the tongue burning has subsided a bit...from a 6 down to a 3-4 most days.

I can't say why, although maybe time really does heal all things, or maybe that goofy bite guard really does help relax the muscles that affect the tongue? Also the OPD told me to take a .5 klonopin at night before sleep.

I can't say improvement is because stress has been any less; I've been under an EXTREME amount of stress trying to qualify for a loan to buy a home, and it doesn't look like it's going to happen (anyone got money to lend?) - I have a big down payment and full time employment, my credit score didn't make the mark. Got screwed up in the divorce (if you've been there, you know what I mean). This is disastrous for me for so many reasons. I've spent dozens of hours and weeks on the phone begging people for money - so degrading, humiliating, and frustrating. I've actually been told I don't have enough debt to get a loan because Ive been such a good saver, and that's hurting my credit score. WHATTT? It's crazy.

(as a friend pointed out: you can go out and buy a semi automatic weapon and mow down an elementary school, but you can't qualify for a loan with 30% down if you have a late Verizon bill).

When originally injured, I literally could not focus I was in such pain 24x7, felt like acid burning and glass scratching my tongue constantly. I didn't think I could go on one more day. Let's just say, I'm not cured, but I have come a long way.

Of course, mornings are still the only time of day I feel normal for an hour or two, and I go as long as possible without eating or talking. I haven't felt like getting out of bed much, anyway. This injury changes your lifestyle so much.

Some statistics

I've now personally seen over 150 reports of this injury.

At last count, there were-
14 "following" this blog
Over 60 people have posted here (many anonymously)
56 members on the Dental Lingual Nerve Injury Facebook page
11 more on my Dental Disasters Facebook page

The Facial Pain Research Foundation says it serves over 30,000. It is not known how many of these are lingual nerve injury sufferers. Though it is predominantly for Trigeminal Neuralgia, it also serves a variety of other ailments.

----------
UPDATE, as of 2016

There have been over 25,000 page views
Hundreds of people have posted to this blog
Our Facebook page is also busy with updates from people all around the globe

This condition is still very under-reported. Please help us bring more attention to this issue, and the hopes of financing a research study to help end our pain.

If you have any contacts in the media, fundraising or book publishing, send me a messaage so I can get them some more global info and details.

xoxo Jane

Dysfunction Junction, or, how was your Christmas?

We all have enough on our plates already with the pain, which is only made worse by stressful life situations. Things often escalate at the holidays, with tension all around. My left side is now burning far worse thanks to the family I happened to be born into.
All around me seem to be happy, cozy fireside families...but not mine. I had a wonderful upbringing because although my mother was divorced, I had loving, involved grandparents. Unfortunately, I haven't been able to provide my kids the same. My mom passed away years ago, so they never knew her. My mean old dad and his wife are a subject for a whole 'nother blog. I'm a single mom with no family nearby.

So, I had to invite myself over to my sister's over an hour away; she wasn't shy about stating she didn't really want me there because it was invading her family time. Um, last time I checked we were all a family, and I can't imagine ever closing out any family member in a time of need, but I digress...in the end, she came around, and I did go there with my kids. Things were going along fine, til she felt the need to insert herself into a dispute I've been having with my dad (he hasn't spoken to me for over a year - his decision, not mine, and he's done this to every family member at some point, including this sister, it's just my turn now), and I tried to defend my position.  She went into an uncontrollable rage, as I've seen in the past, and threw me and my children out of her house on Christmas.

Now, I'm not going to pretend I had nothing to do with it, I mean, we argued, tempers flared, but when I tried to leave the room to diffuse the situation, she followed me. Then I tried to hug it out with her and said "let's not do this", she screamed at me to get away from her and get the F out of her house. I've rarely seen my kids eyes and mouth so wide open, and I hope never to again.

Then she sent me a horrid, scathing email talking about every problem under the sun that SHE has, which had nothing to do with the subject of our argument. But there, you see, is the key to all of her spewing at me...it has everything to do with her. This is so hard to comprehend and accept when you're being thrown out, but clearly she has "issues" that are very deep, and have nothing to do with me. I took the brunt for her anger at her husband, ex-husband, whatever, life in general.

Some people carry anger around with them and we don't see it. We carry pain around with us and people don't see it. In some kind of warped universe, we are not all that different.
It's how you deal with it that sets you apart.

I did not answer the email; that would only escalate things. I believe it's best for my sanity and peace in general to just get far away from her while she's like this (which could be for many months or even years; she's done it before, just like my Dad). I hope you had a Norman Rockwell Christmas unlike mine. Whether you did or not, feel free to share your stories here!

Recipe for recovery?

Happy Holidays everyone... A special hug to those of you who are alone, as I am, without a spouse or any living parents to celebrate with, I want to wish the very best and encourage you to post and comment here and on our two facebook pages.

I've heard too many stories of depression and folks feeling suicidal, and I too struggle with negative emotions and frustration over this pain every day; the holidays tend to escalate any feelings of isolation or misunderstanding we are already experiencing. We've had many posters here who disappear, and it scares me that they are alone out there trying to deal with this. So if you're still there,
 don't jut sit there, reach out and let me hear from you!

There are now 47 members on the page Dental Lingual Nerve Damage - www.facebook.com/groups/260466177345212
Lots of good information and support being offered there, so please jump in.

A few people have shared that they found relief, some even lasting relief, after using the hot pepper candies, so I decided to dig up the recipe on the Internet. Et voila, here you go.

Have you already tried this?  Please share your results, either here or on our facebook page.

Capsaicin Candy Recipe

Capsaicin the substance that makes chile peppers hot, has been found to reduce pain in arthritis patients when topically applied repeatedly over several is weeks. Researchers have found that it reduces substance P which is found at nerve endings and is involved in transmitting pain signals to the brain. Using this principle, researchers at Yale University School of Medicine have devised a candy, composed of hot chili peppers and taffy, to ease mouth pain in cancer patients undergoing chemotherapy. Often chemo causes painful mouth sores that are difficult to treat. The sugar in the candy inhibits the burn of the capsacin in the mouth while the capsaicin provides pain relief.

Hot Pepper Candy Recipe:

1 cup sugar
 ¾ cup light corn syrup
2/3 cup water
1 tbs cornstarch
2 tbs butter or marg
1 tbs salt
2 tsp vanilla
½ tsp cayenne pepper
8x8x2 buttered pan

In 2 qt saucepan, add sugar, corn syrup, water, cornstarch, butter and salt.
Over medium heat, stirring constantly till hard ball stage (256F). Remove the pan from heat. stir in vanilla and pepper.  Pour candy into buttered pan to cool. Don't scrape the sides of the saucepan or your candy might crystallize.
When the candy is cool enough to handle, butter your hands (important unless you like having toffee stuck to you) and pull until satiny and stiff. Pull into long strips, cut into 1" pieces, and wrap with wax paper.

My OPD also told me to get Zostrix  capcaisin liquid for my tongue, but I didn't find it at any stores nearby (I even asked for it special order). Please let me know if you've tried this or found it.

Welcome new blog posters

9 blog comments were added by new contributors. Sorry they could not be posted sooner; technical difficulties. Thank you for your patience.

The common thread here is that people continue to be injured every day in this manner; we are getting several new blog posters every month with dental disaster stories to share.

TIPS FOR BURNING THROAT-

For those who asked about their throat pain....I hear you...I have this constant need for water to cope with the burning mouth and throat, so  I carry a water bottle with me all day long (room temp). The good news is, I drink so much frickin water I'm flushing every bad germ out of my system, so I never get sick! LOL

I like Hillside Candy's organic honey drops. I order them on Amazon because I can't find them locally. Here's the link:
http://www.amazon.com/GoNaturally-Organic-Gluten-Candies-3-5-Ounce/dp/B001BOC8IQ/ref=sr_1_1?s=grocery&ie=UTF8&qid=1352093337&sr=1-1&keywords=hillside+organic+honey

FOR BURNING TONGUE-

Ask your doc to write a script for VISCOUS LIDOCAINE 2%, it is perfectly safe (unlike the meds that also help, but come with a slew of side effects).  Just tip the bottle and put it right on the burning area of your tongue. It really does numb your tongue temporarily, but I haven't figured out a way to haul around that big bottle of fluid and subtely pour it on my tongue in mixed company. ;)

FOR EXTREME FACIAL PAIN -
For those who are still in the crunching glass sensation days, or have the feeling of being punched hard in the cheek, or having a drill boring through your upper teeth, I don't have a lot to offer you. Tylenol and Advil do nothing to help. For these issues I'm on a long term, low dose regimen of painkiller I cut in half to minimize how much I take at one time. I wish I didn't need them, and look forward to the day I someday don't.

PROGRESS, OR LACK THEREOF

I actually feel worse lately and feel like I've slid back to how I felt a year ago. I started a new job, so maybe I'm tensing my jaw, neck and shoulders more due to anxiety. As we know, it's a chain of events that worsens when you tighten up due to stress that leads to pain in the ear, throat, and of course always the tongue. I also now feel the tension in my neck and shoulders. I need to remind myself, and all of you, to breathe more deeply whenever you feel tight, tense, or overwhelmed. Just breathe.

I actually dug out the ear drops again for the first time in ages. That is also something you need a prescription for from your Dr. (I asked for something similar to viscous lidocaine, but for my ear). It's kinda gross when warm watery medicine leaks out of your ear, so just keep your head tilted to the side and plug it with a cotton ball (again, not really helpful in mixed company, but in a pinch, you can go in the public restroom for a few minutes; don't ask me how I know that).

INSURANCE HELP FOR THIS? NOT!

I have been meaning to go back for cranial facial massage but have a hard time being so self-indulgent as to spend that kind of money. I wonder how to get insurance companies to start paying for some of this stuff? Any ideas? My visits to the orofacial pain specialists have all been paid out of pocket, too. Ka-ching!

CHANCES FOR RECOVERY - Everyone has the same question, when will I get better?

Everybody recovers at different rates and some, like me, appear to have permanent nerve damage. We've had people post who were injured like 15 years ago (I'm at 3-1/2 years myself). If you were only recently injured, like within the last week, we may never hear from you again because you recover and never return to the site.

But if you are still numb or have burning pain 6 months or more after injury, the chances of complete recovery are considerably reduced. If you are still hurting after a year or more, you may improve somewhat, but I haven't yet heard of one person who completely recovered. Just know that you won't continue hurting as much as you did the first few months, they are the absolute worst and can make you depressed and scared.

FACEBOOK - Just a reminder for those who want to 'friend' me on our facebook page- the URL is
http://www.facebook.com/jane.fisher.96742

PLEASE POST AND COMMENT THIS BLOG!
Have a wonderfu, pain-free day everyone. Oh, and one last thing this election day:
GET OUT AND VOTE!!
Love, Jane

Answers re: dental injuries

First, the news: New discovery this month- my latest addiction are Halls sugar free lemon refresher drops- only the lemon variety. Don't ask why, it just helps reduce the burn. At first it burns a bit more but...wait for it... if you get through the first few minutes it does help. 
I DO NOT, however, recommend Altoids or any form of mint, eucalyptus or cough drops with all that junk added. Placing peppermint on an already burning tongue is just asking for trouble!
Now for a personal reveal: I have a major guilt complex- Ready? OK: I want to answer every question and have a complete dialogue with every person, individually. But I don't always have the answers. I read each post and feel for every one of you, though I can't always individually respond (especially to anonymous posters).

PLEASE dive in and comment/respond - I am simply a moderator, I'm not by any means the only authority. Your personal experience and comments are valuable!! 
Or, to quote the great Jerry Maguire: Help me help you!

Because this blog can be cumbersome, I started the Facebook page - if you don't want your friends seeing your posts make another FB page- it only takes 2 minutes to create a second FB page with a made up name that is just for communicating with us in the pain world. Add me as a friend: Jane Fisher (dental disasters). It's much easier, technologically speaking, to post and get questions answered there than here. You can email me there, too.

The more we all share our experiences and put our heads together to brainstorm, the closer we can get to finding answers and cures. Sure as Hell no one else is working on it...maybe WE can have the breakthrough.
I hear new stories at the rate of several a month, and I am convinced this is only the tip of the iceberg. 
If we had more publicity, and others were not being misinformed by their confused/puzzled/scared doctors, I think we'd find TONS more sufferers like us.
Thoughts?

Getting into hot water...literally

One thing I find helps relieve the pain that I wanted to share with you is really basic:  hot water. This can be experienced as a nice hot bath (one of life's greatest pleasures) - lean forward and sink your face right into the water...it really does help. Swish warm water around in your mouth, that's a good one, too. The relief is temporary, but it's natural, and it really does help. During the work day try hot tea if you're going to have a day with a lot of speaking, but make it decaf; caffeine and sugar stimulate the nerves and ultimately pain will be worse 30 minutes later.

So this week I find myself in hot water again, after being laid off from my job in a reorganization. Yeah, here we go again unemployment yada yada. I could actually use a little downtime to get my personal life in order in the aftermath of a horrid divorce. A job is just a paycheck; I'll find another one. In the meantime, I have more free time to brainstorm with all of you what we can do to stop the dental community from butchering others, with zero accountability.

We need a way to enforce safer methods, and to hold doctors liable for injuring people. Not sure if this means forming a non-profit to bring attention to the cause, writing a book, producing a video or what...if you are willing to participate in the Pain Project (for lack of a better name at present), and have ideas of how we can get attention for our cause, send me a message. Don't forget we also have a Facebook page, under Jane Fisher/dental disasters.

I want to see the dentists in hot water for continuing to ignore/deny that this is happening to people every day, and for their cavalier attitude.

Is Cymbalta the answer?

SEP 2011 - It seems I have turned a corner. While I can't say I've recovered, I can say that I now see significant improvement over the course of the past month. I'm taking Cymbalta 30mg for the nerve pain, at about 11:30am. That way I'm not a zombie during the workday, but feel sleepy after 10pm or so.

Sleeping itself is very disrupted - like your brain goes at warp speed when you are trying to shut it down; I am very reliant on Ambien and wake regularly.

As opposed to the Lyrica and Neurontin, which each gave me terrible brain fog, fuzzy vision, memory lapses, and all day sleepiness, Cymbalta keeps me more sharp, clear and focused. Yes, I still yawn a lot, but once I got used to it (after about a month) I stopped falling asleep in boring meetings. Well, mostly. haha

I've cut way back on klonopin. I no longer need it every day. Nor do I need the topical benzocaine every day; in fact, I'm no longer carrying it with me like a life preserver, as I did for the past 26 months. I do have setbacks still; typically on days the weather changes, and tense/stressful days. But the burn I feel on those days is no longer the norm, it is FINALLY the exception; maybe 1-2x/week.

I can't tolerate the cold any longer, that really ramps up the pain. I have business trips to cold locales during the winter, so that's a problem. The rest of the year I'm in the South so it's ok.

I'm sharing this info with you to give others hope that when all seems hopeless, there is still a good chance you will improve in time. For me, it seems to have taken far longer than for others. I can't say why. I still have pain level of 4-5 most days...but considering I was 8-9 for nearly 6 months, then 6-8 for nearly a year, it's a definite step in the right direction. It may be the best I ever get. I'm now at 2 yrs 9 months past injury date. Hard to believe

I do hope to get off the Cymbalta in a few months. Right now, I have too much going on to toy with withdrawal symptoms and the posssiblity of pain returning. But I'm hoping this little pain holiday retrains my brain to teach it that pain should NOT be the normal way to feel.

How is everyone else doing?

Back online with new posts and updates

APRIL 2012 - Hi folks, I apologize for neglecting my blog...I actually had trouble logging in due to 2 conflicting Google accounts, and finally found the time to figure it out today. So you will see about a dozen new posts from people who tried to post previously, and I was unable to publish their comments.

I've been through a great deal since August/Sept. I got off the Cymbalta in December - didn't like the side effects. Ironically, though, the pain has lessened so that even when I went off the Cymbalta, it didn't get more painful as I feared ...the pain leveled out at the same place. I don't know if my theory on breaking the pain cycle temporarily to "re-set" your brain may have actually worked.

While I still have pain every day of my life, it's nothing like it was. I want to let people know that there is hope. Doctors are always surprised to learn that I'm still recovering after 2 years, but there you have it.

An important component of this is accepting it, and determining that this is now how you live, and you can deal with it. No, your life is not the same as it was, but you will adjust. Realizing that you are now someone with nerve damage, and I can't allow it to take over my life, seemed to help me with coping and acceptance, but the lessening of pain over time is the #1 helper. It's hard to think about ANYTHING when you are focused on pain and burning all the time.

I still rarely tell anyone about the injury - no one at work knows. I still have deep pain in my upper teeth all along the left side from front to back that I don't know what to do about. I take a small amount of pain medication still, daily, to keep my cheerful disposition!

My tongue still burns every day; less in the morning and building til night time. The throat pain is rare now. The ear pain is sporadic. Headaches - yes, still have those, and wearing a ponytail still makes my head sore. Trying to remember not to be tense, and to loosen my jaw, seems to help. I still cannot lie on my left side because it hurts my face too much; I have to sleep on my back or right side. That's annoying.

I have still never returned for the crown I need to get on my temporary root canal from 2+ years ago; I'm too scared to make things worse.

I'll write more when I have time. Just wanted to let you know I'm back online so please continue to  share your stories!

Quieting down

In the past week I've noticed significantly less tongue burning. I can only hope this is a permanent thing! Not sure what to attribute this to, except that maybe the Cymbalta I've been taking for about a month is finally kicking in.

There is definitely an adjustment period with any new med, and it's tough to sticking it out waiting for the results. At first I had night sweats but that quickly went away.

I take a measly dose, 30mg,, once/day around 11am. (Doc would like me to take 60mg) It makes me yawn a lot during the day, and have very active dreams when sleeping so I don't feel rested, but does seem to be helping with the nerve pain.

Those side effects are kind of minimal compared to some of the other drugs I've tried. I am using much less Clonazepam and topical Lidocaine because the burning is mostly under control, except for the times that I'm super stressed/anxious.

Let me know if you're taking something that's working for you.

on the tongue

PT told me to keep my chin down, like make a double chin, throughout the day. This stretch counteracts the weight of my head being placed on spinal nerves C1 and C2 when we slouch and let our chins move forward (as in listening intently in conversation, looking at TV or computer, driving) which could be contributing to tongue, ear, throat pain. Hmmm. Just wanted to pass this along... let me know if it helps you. I do think I feel a bit of relief from these stretches.

May updates

So...in addition to the lingual nerve damage, orofacial pain specialist #2 (who I avoided earlier because he doesn't take insurance, and specializes in TMJ) diagnosed me with severe temporal temporalis. There's an explanation of it here http://www.ernestclinic.com/temporaltendinitispain.html.

I never thought of myself as having TMJ, or being a teeth clencher, but you'd be surprised what stress does to the muscles in our necks, shoulders, and faces, and how everything is attached all the way back from your mouth to behind the ears to neck.

It became a perfect storm after the initial injury, IMHO, because that initial glass- crunching-like pain in my mouth naturally made me tense, which creates more pain, which makes me anxious, which makes more pain, and...well, you know. A vicious circle. The physical therapist told me my biggest problem is that it is now chronic; but the muscles are in spasm that's not going away; I may never get completely back to what used to be "normal".

Add two root canals to that I had last Spring which were possibly unnecessary and - voila - you get extended, chronic pain that may take years to resolve, if ever. At least I have a diagnosis - after dozens of doctors looking at me like I'm from another planet.

Things are a little better in the last 2 months, since wearing the bite guard at night, doing 2 courses of low dose steroids, and physical therapy, I'm feeling reduced headaches and facial pain. However, the burning continues... I don't know if anyone is going to be able to treat that. Everything -from shoulders to throat to ear to temples -is made worse by stress, when muscles tense up.

FYI - Reducing the number of hours I'm on a computer or in a car commuting has been very helpful.

Being on leave from work has saved my life, given these treatments a chance to actually work and show improvement in my condition; that boss and the stress was absolutely killing me. I wouldn't have made it there - I'd have quit by now. I'm interviewing for other jobs but have hit some speed bumps (I was promised 3 job offers: one company went through a merger so the job disappeared, at another the CEO was fired so there's a hiring freeze; a third wanted to cut my pay 30% and I just couldn't accept it). Even with all this, the economy still looks brighter than at this time last year.

All I can do is focus on deep breathing, relaxing my shoulders and face, and trying to stay distracted when the pain ramps up.

Here's what I still rely on:

• Viscous Lidocaine applied directly to tongue - numbing for about 20 mins. (use before meetings and other important events)
• 1/2 Klonopin on the tongue - a good temporary fix but (yawn) makes me drowsy.
• Pina colada flavored gum - not supposed to chew it, so I try to just let it rest in my mouth... Try being the operative word in that sentence.
• Biotene mouthwash rinse for dry mouths (won't burn like others) after eating
• Low doses of painkillers, still almost an every day necessity...but no more Lyrica or Neurontin for nerve pain - too much brain fog, and the blurred vision I experienced never really went away. Or, maybe I'm just OLD! (just had a birthday and now I'm pushing 50 - ackkk!)
• Avoiding spicy foods, excess sugar, and caffeine

Hope all is well - please be sure to take a minute to post how you are doing :)

- J

New treatments and therapies

So here's what I've been trying lately. While not particularly revolutionary, these are new to me, thanks to my two new doctors (OFPS and PT) who appear to be at least somewhat familiar with our plight of chronic burning tongue and ongoing facial pain.

After requesting a second round of steroids from the orofacial doc (low dose 4mg medrol pack), I find myself about 10% better but still in pain. The best news is the heachaches are reduced which is awesome! Crazy thing is, I've asked several other doctors for steroids over the past year and been turned down 3 times, being told "it's too late at this point". I beg to differ (as usual!)

The physical therapist manipulates the inside of my cheek using a tongue depresser, along the lining of the cheek all the way back to the TMJ/ear area- yes, it's extremly painful. That's then followed by tens unit and ice pack for about 15 minutes. I'm supposed to eat soft foods at room temp. I'm also learning how much difference the application of heat vs. cold can make, and trying to understand when to use each. Unfortunately, sometimes the only relief one can get is lying down, and that's just not an option for most of us at most times.

The jury is still out on the new bite guard. In some ways it makes things worse, making my teeth more achey than they already were, but I'm told may just take some getting used to. I'm taking .5 mg klonopin at bed time which helps relax the muscles, the anxiety about the pain, and helps me sleep.

Finally, and perhaps most dramatic, is the relief I got for a few days from receiving injections on the outside of the face, right in the most painful spots where the muscles are so tight they are rock hard (lower jaw, right in front of the ear). I've heard so much about these injections and was curious if they'd help or make a difference - any injection is invasive, and my Dr. was reluctant to give me them due to my history with injections - after all, that's how this whole thing started- while getting novocaine for a filling procedure. I'm not sure what exactly is contained in these injections, some combination of anesthetic (Carbocaine) and cortisone to numb the area temporarily.

The shots hurt like a bugger, but by a few hours afterward, I began to feel relief from the unrelenting pain and headaches I've had for now 16 months straight. It's temporary though. This is all a trial and error process so we'll see how it goes.

How is everyone doing? What are you trying to find pain relief?

Nice to see so many new people adding to the blog - your posts are all so welcome and appreciated. Be sure to add yourself as a follower if you want to be notified of updates as others comment.

Responding to some of your comments:

• Yes, I've heard magnesium is good for nerves as well as constipation, a common side effect from the painkillers. I bought some and take it from time to time.
• Re: medical marijuana, it's not offered in my state, but yes, I've heard great things about its effect on neuropathy, and with fewer side effects; it doesn't have to be smoked, you can get special food, drinks, etc. for medicinal purposes.
• Re: neuromas, not one Dr. yet has suggested that could be an issue, but from what I've read online, it just seems it might explain why the pain has continued for such a great length of time while most people heal within a few weeks.
• I , too, have had numerous medical "experts" try and tell me my pain is not from the novocaine injection that fateful day 15 months ago, and it is beyond infuriating, because I was perfectly fine before it, and permanently in pain afterwards!

The last few weeks have included medical opinions #11-#14, all of which led to no conclusion whatsoever. I saw an OS (said the teeth should come out), a dentist (said should go in and take a look to see if there are any cracks not visible in the 10 xrays and CT scan I've already had) then if not put crowns on the teeth but if so, pull 'em out and get implants; then another endo who said it's probably nerve damage and will still hurt even if the teeth are removed; then yet another endo who numbed each of the teeth individually on upper left side to try and identify where the problem is coming from, then announced she could not figure it out and referred me to an orofacial pain specialist - who doesn't accept insurance, naturally. But I'm going anyway - that's on March 16th.

Meanwhile, pain seems to have worsened and expanded to the entire left hemisphere of my head. My ear, throat, skull are all affect in addition to the trigger point where the aching 2 teeth are, plus of course the constant burning tongue on one side. But, through positive thinking and percocet, I muddle my way through a demanding job, caring for children, and taking care of the house. Can't say I do all of it entirely without complaint, but I try.

It is very easy to get depressed, as one my recent posters mentioned he was completely healthy and fine til this happened. It sometimes feels like a death sentence- not really, but certainly like life in prison... A prison of pain and Hell until you can get that pain under control. Pain does strange things to us. The fight or flight impulse kicks in and causes great anxiety, which only worsens things. So I try my best to remain calm and keep things in perspective; this isn't life threatening, things could always be worse, and I need to be strong and get through it.

If I'm helping others in the process, that means there's a reason for all this. I find something about that comforting.