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