Tuesday, April 27, 2010

Charting your progress

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, April 25, 2010

Coping with the Pain - Meds and Treatments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

If you have found something that works for you, PLEASE share it here....no comment is too silly or unimportant. You never know when you may be really helping someone.

Will provide more in future posts

Saturday, April 24, 2010

How a simple dentist appointment can change your life

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

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

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

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

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

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

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

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

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

    If you are feeling burning pain on your tongue and teeth, gums or lining of the mouth and/or cheek, I am sorry for the pain that brought you here. There is already a board called Lingual Nerve Injury Forum, and also 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.