Updates for a new year

My apologies for disappearing for awhile- technical difficulties with Google being buggy. I couldn't publish anyone's comments, nor update my blog. Today I went to comment on one of my own blogs, and -presto- all of a sudden it will accept my login, from the comments screen only, and now lets me post. WTH?
Google doesn't seem to like Macs (and my old, wheezing PC's hard drive is just about dead).

Anyway, enough about my technical issues. Month #13 has been intense; I finally started a regular, full-time job. I spent much of last spring running all over town to various doctors trying to figure out why my mouth was screaming in pain all the time, and lost the temp job I landed.
By fall, I found another temp job, then another, about 6 weeks each - I was medicated, so although I was dealing with the pain better, I became sleepy and forgetful, which doesn't go over real well in the work place. Fast forward two temp assignments lost later, and it's New Years 2011 - I get a job offer.

I've been at the new job a month - long enough to get benefits and disability insurance - YES! Of course, the downside is that the job's very intense, and while it should be a distraction from my pain, seems only to add to it. Much of this is due to being worn down from working long hours and driving long distances, and the stress of not being home with my child.

It seems the Lyrica has stopped working; I have been taking 50mg 2x day, so even tried kicking it back up to 3x/day, but found no change. Meanwhile, I've gained a lot of weigh; I'm now chubby and swollen around the ankles, with brain fog. Very attractive. I read online that sometimes Lyrica does stop working after some months, so am looking for alternatives, yet again.

Cymbalta seems to be the favorite pick with the least side effects. I really don't want to be on an antidepressant, but clearly I'm running out of options.

For those who don't read regularly, here's the rundown:

1. The pain in my tongue is relieved by chewing gum (Pina Colada being the most helpful flavor), but most readily by Clonazepam tablets allowed to dissolved on the area of burning. That provides about 1/2 hour of relief so I can get through the really tough times, but makes me sleepy (so I spit out the tablet, don't swallow it)
2. The pain deep in side my cheek/teeth/gum where the root canals went in last year is not helped by Clonazepam. For that, I've been taking Lyrica, which was helping for about 6 months, but just seems to be dwindling of late.
3. I sadly have to avoid caffeine or anything that might stimulate the nerves; in fact, I find alcohol calms the nerves; that then becomes a balance between being relaxed so the pain's less distracting, but needing to be alert. Oh, the irony.
   
4. Finally, I continue taking B vitamins and multi-vitamins. I no longer do acupuncture, though my head still hurts on the left side, and I still can't sleep on the left side.

I'm going to a new orofacial doc next week, someone who said he at least knew what a lingual injury was...will report back after that visit next week. (The neurologist from the orofacial clinic at the dental school I went to last year is good, but only comes in once/mo; I have to wait til March 1st, and take several hours off work to meet with him. Therefore, I'm exploring other options.) Trying to schedule Dr appts when my boss is out of town next week; I feel like such a child. But I can't lose this job; Lingual nerve injury is not the kind of thing they write you a disability note for.

I am wondering if some kind of neuroma formed that is preventing the healing which I should be experiencing by now. Around month 9 I plateaued and stopped improving. The nerve may be compressed/ scar tissue may be around it, further extending this nightmare. That is what I will ask the new doc next week.

How's everybody else doing? Anyone discover any great secret to pain reduction, like the hot pepper rub (but less disgusting)? Do tell!

We now have a Facebook page

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

And back to burning again...

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

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

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

How a simple dentist appointment can change your life

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

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

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

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

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

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

I'm told the odds of this injury happening are about 1 in 100; considering how many dental injections are done every day in the world, that doesn't sound so rare to me. There are many nerves running throughout our mouths that lead into the trigeminal nerve. Nerves branch out from there into most of your head, face, and of course the teeth, tongue and oral mucosa. This can cause:

• burning tongue
  
• throbbing, sensitive teeth (such as to wind blowing, or to cold)
• feeling like the tongue is clamped
• many people report "battery acid" or "crackling electrical" feeling on the tongue
• numbness and/or loss of taste - or, just the opposite, hypersensitivity
• chemical taste, "chewing tin foil" feeling
• feeling like you've been punched in the cheek that doesn't go away
• headaches
• teeth feeling like they are "on ice" or tightly held by a vice-grip

burning throat (on one side only)

lingering numbness from novocaine

a bruised feeling in teeth, face, or neck (but only on one side)

and more

(feel free to add your symptoms)

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

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

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

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

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

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

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

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

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