Thursday, December 27, 2012

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

Wednesday, December 26, 2012

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 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 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!

Sunday, November 25, 2012

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 -
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.

Monday, November 5, 2012

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.


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:


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 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.


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).


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

Have a wonderfu, pain-free day everyone. Oh, and one last thing this election day:
Love, Jane

Wednesday, July 25, 2012

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.

Saturday, May 26, 2012

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 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.

Friday, April 27, 2012

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!