Saturday, June 7, 2014

How do I explain this...?

Do friends and family look at you like you're nuts, or delirious, perhaps a hypochondriac when you try to describe this injury? Frustrating, isn't it.

When you have pain that no one can see, you find yourself on the outside looking in a lot of the time. People just react to your complaints like you're batsh*t crazy. You can feel somewhat disconnected from "normal" people, who walk around seemingly without a care in the world, much less a constant, nagging burning, ache, throbbing, or sharp, stabbing neuropathic pain.

For many people on this blog, it's just an annoying numbness...I imagine it must be like that dead feeling in your mouth that turns to pins and needs when you leave the dentist, which typically fades after a few hours. Except it doesn't go away. Most seem to have the burning tongue in common,
Um, ok...
among a variety of other symptoms. How do you describe your tongue burning?
  • "It's like you've burnt your tongue on hot coffee. Every morning.
  • It's feels like you've scraped your tongue on the sidewalk, only there is no scrape mark there.
  • You know that moment you touch a hot stove, and you yank your hand back because it hurts... There's no evidence of a burn yet, but it stings. Imagine that my tongue just touched the stove. All the time. Every day. "

As for me, my tongue is hypersensitive to every sensation... I feel everything twice as much on the left side as on the right. This includes everything from spicy foods, to the natural curves of my teeth. I also get weird little headaches, sharp ear pain, and an achey throbbing in the teeth sometimes that feels like I spent too much time biting on a popsicle. The pain in my face feels like someone is pressing a knuckle into it. And it changes from day to day. A lot depends on weather, stress, sleep, and occasionally, I don't really know why it's hurting.

 How do you describe this to others, and what is their reaction? Reply in the comments.



Wednesday, April 16, 2014

What it feels like after 4 years

At this point I'm really just annoyed. I'm not in the kind of mind-splitting pain I was for the first 2 years, when I could think of little else but how to relieve this discomfort, and spent hours and hours pouring over the Internet, trying in vain to find better doctors and cures. I learned that there are none.

Now it's become part of daily life. I can manage to go through my day without constant obsessive thoughts about dental pain, so long as I take low doses of painkillers. Every day, every couple of hours, the pain ramps up to the point I notice it, and take a little something to tamp it down again, being careful not to take so much to the point it makes me sleepy. I always feel like I'm keeping this big secret, and I'm not comfortable with dishonesty. But it's necessary in this case.

So, painkillers have also become part of daily life. Granted, the dosage of medication is very low, but still, I need a constant input of pain relief in my blood stream or symptoms escalate to the point of distraction.

This also means having to go to the doctor's office every month, then pray I'll have no trouble filling my prescription; and the time and expense involved with that. Since I am unemployed (again), getting the time off is no longer an issue, but the tests and so forth are not affordable for me with no income coming in. I'd actually like to find new doctors, but I dread starting the process all over again, for really the same result.

I've put off visiting the dentist for cleaning and x-rays for a few years now, so will be going to a new dentist next week. I'm terrified that they will find a cavity that needs to be filled, which is how this whole thing started. But, my teeth have become quite yellow and they just need a cleaning, I feel kind of gross. My toothbrush and floss, no matter how diligently applied, just do not do the job well enough. Professional cleanings are still a must.

I love hearing from others about how they are doing better. I'd especially like to hear from anyone in the state of Florida, as the qualify of medical care I've found is pathetic. If you can recommend any, especially if you have a Naturopath, please don't hesitate to post here or on our Facebook page (you can also message me at Jane Fisher on FB)

Hope you are feeling well. Keep the faith! :)

Tuesday, January 21, 2014

Don't go to the dentist's office alone

My lingual nerve injury has faded somewhat and things have settled - I'm living "the new normal". My pain that is far less than ever since my injury. But I have a new dental situation that may stir everything again. Sitting eating lunch the other day I felt something pop out in my mouth - it was the crown from a very old (15 yrs-ish) root canal - the left molar, #14.

Apparently, the crown that dislodged was a "temporary" crown, was only intended to last a few weeks, but it's been there since I had the root canal re-treated a few years ago. Yes, I said years. I'm not proud of it, but there you go.

When I was reeling in pain following my lingual nerve injury, no one could figure out why, and they figured it was a failed root canal. When the re-treatment of the root canal didn't completely resolve the pain, they determined I ALSO needed a new root canal in the tooth next to it. I was like an injured deer in the woods, wide-eyed and naive, doing whatever they told me to do. I would have done ANYTHING to make the pain stop, and I imagine you feel the same way right now.

Were either of those procedures really needed? Who knows. Maybe all the pain was just from the LNI. )

Why did I never replace the temp crown? I can only guess that
A. I was so traumatized by all the work I had done on my mouth in 2010-2012 that I decided to postpone further dental work because I remember the doctors telling me to "give it a rest - let things settle" (only things never did settle, completely) and,
B. that crown simply got lost in the shuffle, after learning I urgently needed crowns on 2 other cracked teeth, in addition to the nerve injury I was still trying to nurse...there was just so much going on, that it was never done. I thought it was done, but it was not.

So now, bacteria has been able to creep in underneath all this time, so the already-dead and discolored tooth is now decayed to the point that the tooth is kind of falling apart.

I'm painting a really pretty picture here, aren't I? Trust me, I'm as grossed out as you are.

How could this happen? Well, anyone going through the life-altering distraction of a new lingual nerve injury knows that you aren't exactly on top of your game, and there may be details that, well, slip by. This all occurred at a time I was going out of my mind trying to trace the case of my ongoing pain and getting no answers, seeing doctors all over town, getting two very expensive root canals on the same side of my injury which only exacerbated the situation and, in hindsight, may not have even been necessary.

The crown falling off last week was actually fortunate; I wish it happened sooner. Had that not happened, I would not have realized I needed to do something about that tooth- remove it - and that possibly some of the continuing pain in my face/tooth/gum is caused by an infection there.

The dental assistant when I went in for the loose crown last week scolded me, saying "That's what you get - you can't let these things lie, Jane". I quickly rebutted that this was not intentional, and their office never called to remind me the work hadn't been completed. Their response is "we inform our patients when we see it, and it is up to you to remember".

You could say "What a crappy dentist!" and tell me to find another one, but this new dentist works in the same office as my orofacial pain specialist. Now that the pain is controlled, and I can think straight (well, straighter), I wonder what else "slipped by" over "the lost years" since being injured on 12/31/09.

If you are lucky enough to have someone you can bring with you to the dentist's office, do it. They'll be thinking much more clearly than you are. I'm not married, and my kids were still young then. Now I discuss my situation with them and they are a great sounding board. Back then, it was overwhelming, and not fair to put it all on them. I'm the parent, I'm the one who's supposed to be strong.

So now tooth #14 is dead and needs to come out, it's not healthy to keep it in my mouth. In fact, there is a school of thought that says root canals, trying to "save" teeth in general, are completely unnecessary. I can see how cosmetically they'd be desirable on front teeth, but should root canals in back teeth be performed at all?
They cost well over $1000+ in my area and only last 10 years max (the dentists never inform you of this, you assume it's fixed forever), root canals weaken the tooth making cracks more likely, so need to be covered with a crown which also costs an additional $1000 or so. We pour thousands of dollars into a tooth which is unhealthy, leave it in your mouth, and need to remove it some years later, anyway. The alternative is tooth extraction. Holistic practitioners advocate tooth removal and no root canals. I did not even know this was an option back when they were done!

This week I'm walking around with just a little brown nub in the spot where my molar used to live. I'm scheduled for oral surgery next week to extract what's left of the tooth. A few months from now, I'll have a permanent implant/ fake tooth put in that spot. It will cost a small fortune, even with dental insurance (insurance doesn't cover everything, and they may consider this cosmetic, but actually the tooth is being replaced to keep others from shifting out of alignment into the gap).

Knowing what I do now, I wonder why patients are never fully informed of their options, and always have to learn the hard way. If not for the Internet, I would not know any of this. Which is exactly why I'm blogging this today - because you may find yourself in a similar situation (or may have already in the past).

Going to the dentist has started feeling a bit like going to a used car lot. You wonder if you've been scammed, no matter how honest and fair they seem.

What else is there that the dental profession isn't telling us?

Friday, September 20, 2013

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.

Tuesday, July 16, 2013

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



Monday, April 8, 2013

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/)

Monday, March 4, 2013

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?

Friday, March 1, 2013

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.

Sunday, January 27, 2013

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

Sunday, January 13, 2013

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.

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.

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 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!

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 - 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.

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.

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

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.
Thoughts?


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 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.

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!

Tuesday, August 23, 2011

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.

Sunday, May 29, 2011

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.