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.

May updates

So...in addition to the lingual nerve damage, orofacial pain specialist #2 (who I avoided earlier because he doesn't take insurance, and specializes in TMJ) diagnosed me with severe temporal temporalis. There's an explanation of it here http://www.ernestclinic.com/temporaltendinitispain.html.

I never thought of myself as having TMJ, or being a teeth clencher, but you'd be surprised what stress does to the muscles in our necks, shoulders, and faces, and how everything is attached all the way back from your mouth to behind the ears to neck.

It became a perfect storm after the initial injury, IMHO, because that initial glass- crunching-like pain in my mouth naturally made me tense, which creates more pain, which makes me anxious, which makes more pain, and...well, you know. A vicious circle. The physical therapist told me my biggest problem is that it is now chronic; but the muscles are in spasm that's not going away; I may never get completely back to what used to be "normal".

Add two root canals to that I had last Spring which were possibly unnecessary and - voila - you get extended, chronic pain that may take years to resolve, if ever. At least I have a diagnosis - after dozens of doctors looking at me like I'm from another planet.

Things are a little better in the last 2 months, since wearing the bite guard at night, doing 2 courses of low dose steroids, and physical therapy, I'm feeling reduced headaches and facial pain. However, the burning continues... I don't know if anyone is going to be able to treat that. Everything -from shoulders to throat to ear to temples -is made worse by stress, when muscles tense up.

FYI - Reducing the number of hours I'm on a computer or in a car commuting has been very helpful.

Being on leave from work has saved my life, given these treatments a chance to actually work and show improvement in my condition; that boss and the stress was absolutely killing me. I wouldn't have made it there - I'd have quit by now. I'm interviewing for other jobs but have hit some speed bumps (I was promised 3 job offers: one company went through a merger so the job disappeared, at another the CEO was fired so there's a hiring freeze; a third wanted to cut my pay 30% and I just couldn't accept it). Even with all this, the economy still looks brighter than at this time last year.

All I can do is focus on deep breathing, relaxing my shoulders and face, and trying to stay distracted when the pain ramps up.

Here's what I still rely on:

• Viscous Lidocaine applied directly to tongue - numbing for about 20 mins. (use before meetings and other important events)
• 1/2 Klonopin on the tongue - a good temporary fix but (yawn) makes me drowsy.
• Pina colada flavored gum - not supposed to chew it, so I try to just let it rest in my mouth... Try being the operative word in that sentence.
• Biotene mouthwash rinse for dry mouths (won't burn like others) after eating
• Low doses of painkillers, still almost an every day necessity...but no more Lyrica or Neurontin for nerve pain - too much brain fog, and the blurred vision I experienced never really went away. Or, maybe I'm just OLD! (just had a birthday and now I'm pushing 50 - ackkk!)
• Avoiding spicy foods, excess sugar, and caffeine

Hope all is well - please be sure to take a minute to post how you are doing :)

- J

New treatments and therapies

So here's what I've been trying lately. While not particularly revolutionary, these are new to me, thanks to my two new doctors (OFPS and PT) who appear to be at least somewhat familiar with our plight of chronic burning tongue and ongoing facial pain.

After requesting a second round of steroids from the orofacial doc (low dose 4mg medrol pack), I find myself about 10% better but still in pain. The best news is the heachaches are reduced which is awesome! Crazy thing is, I've asked several other doctors for steroids over the past year and been turned down 3 times, being told "it's too late at this point". I beg to differ (as usual!)

The physical therapist manipulates the inside of my cheek using a tongue depresser, along the lining of the cheek all the way back to the TMJ/ear area- yes, it's extremly painful. That's then followed by tens unit and ice pack for about 15 minutes. I'm supposed to eat soft foods at room temp. I'm also learning how much difference the application of heat vs. cold can make, and trying to understand when to use each. Unfortunately, sometimes the only relief one can get is lying down, and that's just not an option for most of us at most times.

The jury is still out on the new bite guard. In some ways it makes things worse, making my teeth more achey than they already were, but I'm told may just take some getting used to. I'm taking .5 mg klonopin at bed time which helps relax the muscles, the anxiety about the pain, and helps me sleep.

Finally, and perhaps most dramatic, is the relief I got for a few days from receiving injections on the outside of the face, right in the most painful spots where the muscles are so tight they are rock hard (lower jaw, right in front of the ear). I've heard so much about these injections and was curious if they'd help or make a difference - any injection is invasive, and my Dr. was reluctant to give me them due to my history with injections - after all, that's how this whole thing started- while getting novocaine for a filling procedure. I'm not sure what exactly is contained in these injections, some combination of anesthetic (Carbocaine) and cortisone to numb the area temporarily.

The shots hurt like a bugger, but by a few hours afterward, I began to feel relief from the unrelenting pain and headaches I've had for now 16 months straight. It's temporary though. This is all a trial and error process so we'll see how it goes.

How is everyone doing? What are you trying to find pain relief?

Nice to see so many new people adding to the blog - your posts are all so welcome and appreciated. Be sure to add yourself as a follower if you want to be notified of updates as others comment.

Responding to some of your comments:

• Yes, I've heard magnesium is good for nerves as well as constipation, a common side effect from the painkillers. I bought some and take it from time to time.
• Re: medical marijuana, it's not offered in my state, but yes, I've heard great things about its effect on neuropathy, and with fewer side effects; it doesn't have to be smoked, you can get special food, drinks, etc. for medicinal purposes.
• Re: neuromas, not one Dr. yet has suggested that could be an issue, but from what I've read online, it just seems it might explain why the pain has continued for such a great length of time while most people heal within a few weeks.
• I , too, have had numerous medical "experts" try and tell me my pain is not from the novocaine injection that fateful day 15 months ago, and it is beyond infuriating, because I was perfectly fine before it, and permanently in pain afterwards!

The last few weeks have included medical opinions #11-#14, all of which led to no conclusion whatsoever. I saw an OS (said the teeth should come out), a dentist (said should go in and take a look to see if there are any cracks not visible in the 10 xrays and CT scan I've already had) then if not put crowns on the teeth but if so, pull 'em out and get implants; then another endo who said it's probably nerve damage and will still hurt even if the teeth are removed; then yet another endo who numbed each of the teeth individually on upper left side to try and identify where the problem is coming from, then announced she could not figure it out and referred me to an orofacial pain specialist - who doesn't accept insurance, naturally. But I'm going anyway - that's on March 16th.

Meanwhile, pain seems to have worsened and expanded to the entire left hemisphere of my head. My ear, throat, skull are all affect in addition to the trigger point where the aching 2 teeth are, plus of course the constant burning tongue on one side. But, through positive thinking and percocet, I muddle my way through a demanding job, caring for children, and taking care of the house. Can't say I do all of it entirely without complaint, but I try.

It is very easy to get depressed, as one my recent posters mentioned he was completely healthy and fine til this happened. It sometimes feels like a death sentence- not really, but certainly like life in prison... A prison of pain and Hell until you can get that pain under control. Pain does strange things to us. The fight or flight impulse kicks in and causes great anxiety, which only worsens things. So I try my best to remain calm and keep things in perspective; this isn't life threatening, things could always be worse, and I need to be strong and get through it.

If I'm helping others in the process, that means there's a reason for all this. I find something about that comforting.

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!

And so the year ends - quite literally

December 30th is the one year mark for me. Who could have ever predicted a little dentist appointment to get a filling a year ago would have changed my life so dramatically, and made 2010 a year for the history books. But, as I always say... it could be worse.

I will be offline for awhile- I need to have surgery for a separate issue- won't go into gruesome detail. I was fine before this year, now it seems when it rains, it pours. I wonder how much prescription drugs taken regularly over the course of this year for the neuropathy have to do with cysts forming elsewhere? Hmmm. Maybe none at all, just seems odd.

The Lyrica is how I keep the pain dialed down every day (through that, and making sure not to let my blood sugar drop, which makes the pain ramp up). But it does give me brain fog, which seems to be worsening, and blurrs my vision. It's a trade-off; until this nerve pain heals, or something else dramatically changes in my life, I don't know that I could give it up. I just try and push through the fog and focus; sometimes I do better than others.

I hope that the joy of family, friends, and fun at the holidays allows you to put your pain in the background for just a little while. I know it's hard. Don't let the stressful holiday season get to you, it's not worth it. Just enjoy the bit of happiness that you can gleen from every day, when you manage to forget your pain for a moment. To Imo, I expect you may have a newborn any day now, if I'm not mistaken? Would love to hear about it :) There is nothing like a baby to raise your spirits.

Wishing everyone good health, happiness, and wealth this holiday season.

With love,
"Jane"

If it's not one thing, it's another- how getting sick can make you feel better

I got a nasty intestinal virus over the weekend- and by nasty, I mean rushed to the emergency room nasty, anti-nausea meds via IV nasty, projectile vomiting nasty and I think you've already heard way more than you want to know.

My body was wracked with pain from the soles of my feet to my eyelids, but particular my lower back and thighs. In the midst of this 2 days of horror, I realized that my lingual nerve injury didn't bother me one bit. I didn't feel pain in my teeth, my tongue didn't burn, I could lie on my left side for the first time in a year... what the heck?

So of course the next thing I wondered was Holy Mother of God, how can I bottle this feeling (uhhh, minus the stomach flu symptoms). Alas...the fever broke, and slowly but surely, the neuropathic pain returned with its former vengeance.

Has anyone else seen this happen- you get sick and the lingual nerve pain subsides - it's like your body can only deal with one horrific thing at a time so it kind of shuts down and just focuses on the worst one til it can rid itself...then back to regularly scheduled programming. Sigh.

I remember this happening when my mother died virtually on my due date with my 2nd child. My mother was dying, my son was being born...how could this happen at the same time? It was too much at once. And so, my body kind of just went into autopilot for the next few days, til I could lay my mother to rest. Then, the baby was born, a week late. The baby was huge and low, and supposed to be born early. But I somehow managed to hold off long enough to say goodbye to my mom, and not miss her funeral because I was delivering a child. Life is weird.

So, the rugburned/scraped along the sidewalk burn of the left side of the tongue is back, the deeeeeeep achiness in the upper left teeth is -hello!- stabbing me again all the way back to my jaw near the ear, and I'm even getting sharp pains in the temple again. Tragic that this is now what "normal" feels like.

Giving Thanks at 11 months

As the days grow shorter, and the temperatures turn colder, I approach the one year mark of my injury (Dec 30th, 2009 - "a day that will live in infamy"). I have an all-over, nondescript burning sensation most hours of the day. Yep, it's really annoying, and distracting. I have to plan for meetings or any time I'll be away from my purse for awhile, which contains my stash of gums and lozenges, but sticking gum in my pocket, and carrying water.

No longer does just the tip or edge of my tongue burn; it's more widespread all along the left half of the tongue. I still have pain when puting on sunglasses. I still cannot rest my chin in my hand. But I can do lots of things I couldn't do before, like go to restaurants (where hypersensitivity to noise used to kill me), and walk outside even when the wind is blowing (whereas I used to have to pull a hood over my left ear and mouth). I've not had a migraine headache since summertime. So there's definitely been progress.

I'm very encouraged reading that Kev has completely recovered! He is one for the record books, and I will be driving him crazy picking his brain to understand how he managed to finally beat this thing.

The simple answer is, there are no simple answers. This thing takes time - lots of time. And ppppp... patience...something I am NOT known for. I continue taking B vitamins - do they help? Who knows? Couldn't hurt. I am still on meds - couldn't survive without them. I have stopped asking "why me" and "when will I feel normal again", and started just living. I try to notice when the pain is lessened, feel grateful for those rare moments, and burn them into my memory cells, in the hopes they'll someday win out over the pain receptors still firing off.

My thoughts go out to each of you this Thanksgiving. I am so thankful to have this blog and grateful you take the time to read and share your thoughts with me. Have a wonderful holiday!

Burning inside and out?

Here's an odd question. Ok, these are all odd questions, but here's the latest. Has anyone noticed their facial skin peeling? I noticed my chin peels about once/mo. for the past few months... for no real reason. It got me thinking....is this nerve related, it's almost like it's burning my skin from the inside out.

I mention this because I recently came off of a particular bad spell of worse mouth pain, which has now settled a bit. The first quiet tongue day I'd had after about 2 weeks of fire, I noticed, again, the skin on my chin peeling, like from a windburn or sunburn. Only, I haven't been in the wind or sun to any real extent.

And this is like the 3rd time I've noticed this - then I put some aloe on and it's gone the next day. I don't have any dryness anywhere else on my body like on that part of my face.

Things that make you go "hmmm".

Roll Call - Please check in and give your status

How are you doing: Judith, Jenny, Dean, and all the anonymous and infrequent contributors to this blog?
Kritty, Kev, Imogina and Pierre; always concerned about how you're coping and what advice you can give.

How are you doing, what are your symptoms at this point, and has anything helped?

Perhaps our little braintrust can help. I really do think, if nothing else, having a place you can vent about it helps release some of the energy and provide peace of mind that you really aren't alone in this struggle.

Be Well, Jane

At 9 months, pain spikes are less "spikey"

I'm finding less variation between good days and bad now. (They're all bad) Ok, not really...they're all...medium. The highs and lows are not as high, or as low.

When I was charting my pain a few months ago, well, the bad days were like skiing a double black diamond trail...now it's more like a blue run. Occasionally I'll even get an easy green and marvel at my good luck! And, by occasionally, I mean maybe once every 12 days. I attribute this improvement to the Lyrica.

Lyrica is helping to dull the pain in my face/upper teeth. I was RX'd 150mg/day, but since I am managing to cope at 100mg, I am holding there, hoping to do as little systemic damage to my internal organs as possible. I do notice blurred vision and vivid dreams (a known side effect of pregabalin and gabapentin), but consider those fairly minor side effects.

I don't know when I will feel like I can stop the meds. Not any time soon. Having been to all forms of medical experts and them all saying they can't find anything in my xrays, MRI's, etc, at this point I've resigned myself to just keep taking B vitamins, and hoping the nerve continues to repair itself in time.

I have had temporary crowns over my root canals for 6 months now, too scared to go back in and get permanent ones. No one's coming near these teeth. I haven't had a cleaning in a year, so I'm coming due for that, too. Yeah. Fat chance.

I feel pretty normal and not drugged. My heart is no longer racing nor do I feel faint like on the Pamelor (Nortriptilene).I'm not falling asleep sitting up as much. (And they think texting and driving is bad? Hah! Should see how it feels to drive on some of the drugs I've been prescribed. Not safe!!)

The tongue feels rugburned in a wide area most days; occassionally on a good/quiet day, it's just on the left tip. Klonopin puts the fire out, and, since this is an off-label use of an anxiety drug, I get the double benefit of reducing stress. Pain = stress = anxiety = more pain = more anxiety, and so the cycle goes. Sucking on a Klonopin for a minute, then spitting out, helps a lot, though it does make me sleepy. Wish I could suck on them all day, but I can't. I'd be like Rumplestilskin!

Has anyone found that any foods in particular help or hurt the burning?

Surgical options explored... and ignored

On NPR this morning they did a story about a blind man who'd had surgery to restore his eyesight. He was born sighted, but lost his site in a chemical accident at age 3. The result was, his brain was so trained NOT to see images, after 40 years, that even though the surgery was considered a success, and has worked for others... he still can't see.

Retain the brain. That's the key. But, his doctors didn't anticipate this, nor know how to resolve it.

That's what concerns me about those of us who've been living with this a long time. We have to stop the pain cycle to train the brain that pain is not normal. So if that means having to be on meds, so be it.

I'm hoping that this is the key to teaching my brain that my own body's signals are false, or at least to overlook them.

Living on Lyrica and Klonopin, with the occasional hydrocodone, is not a way I ever imagined my life. Ever. I used to avoid even taking Advil - now, I just laugh at them, (aren't they cute?) they're about as effective as a Pez would be to me.

I've heard about surgeries, laser treatments, etc... but every doctor since Pogrel says the results are poor and they don't recommend it for me. It is only recommended for those who have complete numbness. Even then, those folks might end up like me, with hypersensitivity and pain, once the nerve is reconstructed and sending signals again.

I have requested from my doctors thin slice MRI's, MRA's, etc... and been told there's really no point. I'd have to keep searching for new Neurologists to find someone to order and read one, and considering how expensive it is, even with insurance, that's just not going to happen. When I was originally misdiagnosed with trigeminal neuralgia, here are some of the treatments I'd come across; some of these are also being talked about for lingual and alveolar nerve injuries. But I keep being told "no".

• Microvascular decompression - this is brain surgery to release pressure on nerve or blood vessels, they often insert a teflon pad to relieve compression
  
• Gamma knife - less dangerous, not an actual knife. Gamma rays are used to shrink the blood vessels surrounding the nerve. Biggest problem is probably that it's not always effective.
  
• facial nerve blocks - seem to give temporary relief, most insurance won't cover
  
• novacaine at ganglion nerve - temporary
  
• radiofrequency or glycerin rhizotomy- I think they identify nerves sending pain signals and cut them. Interesting thing here is that it targets nerves which, due to not receiving GABA, generate unusual electrical activity. Since I'm taking pregabalin, anything with GABA gets my attention; however, having my nerves permanently severed does not.
  
• Motor Cortex Stimulation- they put electrodes in your head
  

Obviously, my notes here are very unscientific, just gathered from stories I've seen on the web. Anyone who can add medical information or who happens to know anything about these please feel free to comment.

I hope I'm not still blogging about this when I'm old and gray.

The effect of emotions on pain

An observation. Yesterday was one of those rare days when I was so happy I didn't even notice any pain, though I was talking almost non-stop. I met with an old flame for lunch, and we had such a great time, I experienced a sense of euphoria and adrenaline for 4 hours straight as we ate and later walked around talking. However, not long after I left that environment, the pain resumed it's regularly scheduled annoyance.

I've been in happy moods before, but the pain still broke through. I usually have to put some medicine in my mouth to dull the burning, or can't completely smile on my left side because it aches. But this time - not at all.

Why do I feel it during the mundane, day to day stuff like working, driving, and caring for children, but not when my body and mind are chemically elated to a degree that overrides the pain and- most of all- can this scientifically cure us of our pain somehow?

So here is my question for those who may be in the medical field: how do we produce this artificially? Medical marijuana? I have no clue. I can't even pretend to be a scientist. I am merely pondering questions here since the wonderful world of the Internet allows me to do so with no one stopping me.

I also notice when crying the pain to be worse. But yesterday, I had a moment where I got pretty weepy as we shared some memories that weren't so happy (close relatives dying) but even then, no pain. That "euphoric" feeling still dominated over any other. If I could bottle it, trust me, I would!!

I imagine that's why they use antidepressants for nerve pain. We aren't necessarily depressed, but creating that little "high" just enough to better our mood a little, somehow dampens the pain. Doesn't eliminate it, just hides it for awhile.

Scientists are not sure how Pregabalin (Lyrica) works, other than it stabilizes electrical activity in the brain, keeping it from becoming overstimulated. Funny thing is, my brain was clearly very stimulated yesterday during our little nostalgia trip - trying to recall events and people, and the excitement of seeing someone you hadn't seen since you're a kid. Possibly even falling in love again. But love alone can't be enough to stop pain, lots of people are in love but still grapple with pain every day.

Still looking for that magic answer that will put a stop to the pain and let me go back to living life normally again.

Getting off all meds was an epic failure :(

I've seen so many doctors and no one has had the perfect answer for me, so I'm learning as I go. I really have had to experiment. After a few days without Neurontin, the pain was just too much, very distracting and makes me not a nice person.

Since I am in this apparently for the long haul, I really have to find something to help cope with the pain.

So this week:
1. Eliminated Neurontin as Doc recommended. Hmmm pain seems worse.
2. Decided to give Lyrica another shot, but I realized the trick is to take the 50 mg at bedtime, so I don't get that loopy thing where I can't drive, etc... then I take 25 mg pills in the daytime and am titrating up. You really do build a tolerance this way. Recommended dose is 150 mg/day; I'm at 100 now.
3. Because they are capsules, I had to figure out on my own how to manage the dosing schedule, and ask my Dr for two Rxs: one for 25 mg and one for 50 mg. So far, I do think I'm feeling some reduced pain in my teeth and face. (I still have to keep a Klonopin on my tongue when the burning gets to be too much, maybe 1-2x/day.)

Downsides: Lyrica is expensive - over $2/pill with insurance and there's no generic; fortunately I was given samples at the Dr's office that will last me about a month. I'm still hoping by the time I reach a year the pain will be reduced to the point I no longer need this. But no one can predict.

I've read bad things about Lyrica, but then again have read bad things about every medication, including Neurontin. I'm noticing daily headaches lately - not bad ones - not like migraines or anything. Can't say yet if it is related to the Lyrica.

A physician friend tells me he has patients who love Lyrica, and some who hate it. He tries Neurontin first, though thinks Lyrica probably works better - but it's still new on the market, no one really know a lot about it. I'm just hoping this new med continues to help make the pain tolerable without me growing a third arm or something. ;-) His opinion on Lyrica is there are risks and benefits with every medication, you just have to decide if the benefits outweigh the risks.

Hope everyone is doing well and enjoying the holiday weekend...I am spending it with family, which is always a great distraction.

Update - the headaches are gone, and so is the rain we've been having - probably more related to weather than Lyrica. The tongue still burns as the day wears on, but if I could just keep the normal tongue of mornings all through the day I'd be soooo happy. What is the secret?

Now it's your turn

This blog is one of the few places I can talk about my injury, and have been doing so for 4 months now. It may seem that all I do is discuss meds, pain, and dentistry all day long, but in real life, actually, I rarely do. Do you?

In fact, I haven't even given my family the url to this blog. I can't discuss my pain at work or risk losing my (temp) job. I can't tell someone I don't know well (like a date), "hey guess what, I'm suffering a long-term injury and am almost always in pain!". I don't want to be a burden to anyone or seem like a freak. They've all got enough going on in their lives. Some are less sympathetic than others. They just don't know how to deal with it.

Everyone just assumes I'm doing fine now, because I've stopped talking about it so much, but this is still a daily issue for me. Every frickin' day. I don't want to sound like a whiner - I can't stand people who complain all the time - and really, how many times can they hear the same thing when they don't know how to respond or make it better?

So, I don't talk to anyone about it, really, except for the readers of this blog. So I want to thank you for reading, I want to encourage you to share your stories, because we all need an outlet or will slowly go crazy. Suffering in silence is no way to live; not for me, anyway.

Maybe you'd just like to get it off you chest how unfair it is that this happened to you, or ask a question, or maybe someone can help with a symptom you're suffering, or vice-versa. This is not a one-way street. Please add comment and include few details of how your injury happened and WHEN, and what you are going through now. Your age, country/state/province, would be helpful, too. There are different treatments and levels of understanding in the medical communities elsewhere. I know that here, in Florida, it's like living in a virtual medical knowledge desert.

Are you working? Are you medicated? Are you completely healed? Are you married/who is your support network? Have you been back to the dentist? Let me know.

If you click on "About Me" off to the right of this section, you'll see more of my background details. This might be a good place to comment and add "about you". Or you can just comment below this post. If you are concerned about revealing your identity (for reasons mentioned above), you can always post as Anonymous.

I also need to attract more readers to this blog...anyone with blogging experience who has tips on how to do that, please advise. There are more people suffering out there, and the more we know, the better chance we have of finding a solution for all of us.

Be well. Have a great day. Know that you can always come here to blow off steam and no one will fault you for it or think you're a "whiner" ;-)

Jane

The pain roller coaster

I have never been a fan of roller coasters, though I love amusement parks in general. Well I'm at the top of the pain cycle roller coaster vs. the bottom this week, and let's just say I'm not raising my arms with glee. So far the meds experiment is a bit of a disappointment- I've weaned down to 300 mg gabapentin a day (basically nothing) and been on anti-inflammatory Mobic 3 days (think: Naproxen, without the nausea)- I'm hurting more since giving up Neruontin after some pretty quiet days prior, but it could just be coincidence.

I'll give it a few more days, when I'm due for some more quiet ones; if they don't come, and the pain continues to build, I'll ramp up the Neurontin again. I was Rx'ed hydrocodone for pain but I take it by half in such small doses, it just gives a little relief and good mood for maybe 2 hrs at at time. I still have to turn to ever-expanding assorted varieties of gums, lozenges, dry mouthwash and, ultimately sucking on Klonopin, to put out the fire in my mouth all day long.

Something unusual and perhaps worth mentioning: the way the pain feels now vs. a few months ago differs. Earlier in this illness, pain jumped around more from one place to another, (ear, throat, head, teeth) now it's kind of all over. The sore cheek/buccal muscle/root canal pain, achey front teeth, sensitivity to sound, touchy temple, and burning tongue seem to now travel together and be related, hurting on the same days. Just milder all over and worse all over, depending on the time of day and the day in general.

At really bad moments I still apply lidocaine/oragel topically, down to 2-3x/wk from 1-2x/DAY, when I could barely speak without slurring like a drunk person due to the razor-like pain in my tongue. (So there is hope for you newbies!)

Unfortunately, after this amount of time, everything I've read indicates that some level of pain is going to be permanent for me. We'll see at the one year mark in December; it's incrementally less now (if you count increments in milenniums) but I haven't given up hope the trend continues.

The megadosing on Vitamin C has been tough because I need to mix the powder with orange juice with is very acidic for my tongue. So I've been sporadic in that. I can now tolerate the coldness of smoothies, so I try and get extra vitamins from my local Jamba Juice store when possible.

I have spoken with several Neurologists who were recommended by friends; problem is, no one has the foggiest what I am talking about with the Lingual Nerve. With the thousands of nerves in our bodies, seems med schools overlook that one. You'd think someone would come up with a continuing ed class to cover this problem.

(Trying to figure out how to add a site traffic checker but the widget failed. Trying again below. For anyone not bored enough to have left already!)

Where does it hurt?

Curious to know where everyone else feels their pain - the same, or different area (Kritty mentioned the throat). For me, pain has is far worse in the central part of the trigeminal nerve, the maxillary branch (deep in the nerves of the upper teeth and extending into temple), than another other branch, with the addition of the burning tongue (lingual nerve) on the left side.

I feel like kind of like I've been hit just below my left cheek with an aluminum bat, and they stitched me up, but the bruising inside never went away. Random online research makes it sound kind of like the pain in my cheek is NICO, (Neuralgia-inducing Cavitational Osteonecrosis) caused by long-term infection and root canals in the area, or is this normal pain that accompanies everyone's lingual nerve injury? The dental docs just scratch their heads and say they don't see anything.

I'm supposed to return to the orofacial pain clinic for the handheld wand up against my upper gum where the pain is worst - it emits a tingling sensation which can be adjusted so that it's effective without being painful. A few of these treatments are supposed to help - I'm told it's helped others. It did seem to reduce pain for a few days following the original session. Anyone know anything about this treatment? It's $100 a visit - that's like $10/minute!

This is, again, being done at the only teaching hospital for Dentistry in my area. I have found no place else that understands my situation - I may as well be speaking Russian.

I've been doing more research on meds, as I am going to see the pain doc this week and the gabapentin just ain't cuttin' it at 500mg/day. Another $165 for the pain doc visit. Ka-ching.

The choice seems to be antidepressant or antiseizure.
Lyrica
Topamax
Elavil
Cymbalta
Amitryptilene...
the list seems endless, all with various side effects.

What has/hasn't worked for YOU?

Response

In response to Anonymous who replied to my previous post re: Pepper, etc., (I'm still having blogger problems, it wipes out any comment I try to post, yet lets me create regular posts. Bizarre. And very infuriating.)

Injury occurred prior to RCs when injection hit lingual nerve during fillings procedure; but having 2 RC's on same side soon after probably further irritated things. The area of the root canals is exactly where I still have the most pain (other than burning tongue) so your overfill theory may lead to something...what is overfill, exactly? How would I know if I had it and it was pressing on a nerve?

I have not found any practitioner who has any familiarity with my oral pain issue, other than the guy who I'm seeing that insists that Neurontin is the way to go, how is it known not to help oral pain? I'd be interested in seeing that research! God knows I don't need any more more drugs that don't even help. He originally had me on Nortriptiline which was a nightmare for me

Thanks for your input - tell me more!***********************

IN ANSWER TO YOUR RESPONSE - SINCE I CANNOT POST A #&*%ING COMMENT -
So if Neurontin x3 didn't work for you, what does? Are you, like many, finding relief with Topamax?

I do think Lyrica could help, it just scares me. I's tough enough getting through a workday already.

I've seen 3 neurologists and not one has any other recommendation. I feel like they are so used to deal with elderly here with diabetic neuropathy (like in their feet) that Neruontin is just standard.

However, the guy I'm seeing is at a teaching university, which should be cutting edge.

My original injection was shocking in that it felt very deep and I could feel cold liquid running into me. Most injections barely scratch the surface, more like a pin prick- uncomfortable, but not big deal - this was very different. I complained to the dentist, he just shrugged it off, like I was a cry baby.

Pepper & more - Kev are you still out there?

Cayenne Pepper theory

I tried to ask Kev how brushing his tongue with cayenne pepper worked out, but his blog will no longer allow me to post comments. (I thought maybe the problem was on my side, but have tried on 2 different computers - maybe he's chosen to no longer accept comments, as there are no comments from anyone else, either.)

The reason I bring this up is that I came down with a very sore throat this week - mind you I haven't had a cold in 3 years but have been run down lately - and when I read online about magic cures for a sore throat, guess what they mentioned? Gargling with cayenne pepper. Hmmm.

I didn't even like spicy foods much before I got this injury, and now it's almost unthinkable. So all this talk of pepper scares me. But does it really work? I'd give anything to stop the BURNING TONGUE, as I'm sure most of you would too.

The pain all over

Regarding the "spread" of the pain, I find that I'm hypersensitive throughout the entire trigeminal branch now, whereas in the early days of this injury the pain seemed to "jump around" more and change each day. Even if I scratch an itch on my cheek or remove eye makeup, I feel pain underneath. It's like I've got a layer of pain under everything - that's the nerves, I guess.

I no longer take any anti-inflammatories and wonder if I should? Clearly, the entire area is still not settled. Someone told me I need to get my 2 root canals capped, because until I do, I'll still feel nerve pain through there...really? I thought the nerves in the teeth were removed and the crowns were just to protect them because root canals weaken the teeth, and you don't want to lose them altogether. Anyone know?

I do see a marked difference when I first wake up in a quiet tongue, whether in the morning or from a nap - the burning is always less then. I have actually begun napping in my car during the workday because A. I'm freakin' exhausted and medicated and B. it helps with the pain. Just one more way people are going to start thinking I really am insane...if only they knew the pain I was silently enduring...

Now up to 500mg gabapentin per day (2 morning, 2 night 1 midday). I've gained some weight and feel hungry all the time; just a heads up for those of you who struggle with weight gain. Try to keep fruit and proteins around vs. chips and candy, because you WILL be hungry.

I don't get the massive headaches I once did - that was Hell. But I also don't feel much improvement since I hit about 7 months and I am still always looking for ways to avoid becoming a "lifer" with this pain. I have a new boyfriend, and he keep the music so loud in his car I can't stand it. I'm sure he thinks I'm very strange that noise bothers me so much. I haven't yet told him I'm damaged goods - suffering from a longterm injury that may never heal. That's sexy, huh?

I can carefully sleep on my left side now, but if anyone hugs me on the left side, or touches anywhere from my left side of my chin to the left forehead, I can't help wincing (which isn't very nice for the person nice enough to show affection!). My incredible, loving, happy children know to hug mommy on the RIGHT side only! They are literally the oxygen that keeps me surviving. I'm sending one off to college today and you may as well take my right arm - that's how much I'll miss her. And she's only going 1 hour from home! (tears)

Reality check

At the same time, while I whine about my suffering, last night I went to dinner (which I can mostly now do if it's not crazy loud) and they wheeled in a girl on a breathing tube. That same day, I stood in line at Walmart worrying about money, the folks in front of me had to put back 5 items so they could just afford diapers. A friend just found out he has cancer somewhere in his abdomen. This is the kind of stuff that kicks me in the ass about feeling too sorry for myself. I hope it helps you, too.

Comments?

Back online with updates and greetings

Hello all and thank you for your patience as I've grappled with my blogger issues. I still can't add comments to posts, but now can post original posts. Crazy, I know.

Dear Kev- how'd it go with the pepper treatment? Any luck?

Dear Anonymous @ 11 weeks - I hear ya. I feel at this point as though I've plateaued and there won't be any more improvement after 8 months.

But you are still early on, relatively, in your healing after 11 weeks, and could still get slightly better. In all honesty I don't know if you'll ever be completely normal the way you used to be. I feel I won't.

re: depression, we've all been there; I hope following this blog helps to lighten your mood, there are some great people here with wonderful tips and suggestions. Hang in there - you are not alone! We get it!

I am still hoping someone will find this blog and post that they are *completely recovered* - how long it took, and what steps they took to get there. Meanwhile, if we keep putting our collective heads together, maybe we'll figure it out on our own.

Saw the neuro; again said topamax is really for migraines and wants to just increase the dosage of gabapentin and continue the clonazepam for burning. Result has been more sleepiness (though I can function) and still have burning. Super nice guy, but geez, is that the best he can do?!

He also used the TENS unit on my gums and I must say I do feel some relief in my cheek, though my teeth still ache and tongue always burns. He wants me to do a series of these treatments in next few weeks (not covered by insurance of course). I mentioned kritty's remark that seemed to spread the pain and make things worse, he just said "that shouldn't happen".

Dear Kristin - When landing in Chicago I was fine once on the ground. When back in Florida I had no landing trouble at all, really. Maybe it's the thin air we have at sea level.

Dear kritty- if you like write me at smr2121@excite.com for private messaging - your input is invaluable. I could use a referral to someone close to me. I'm obviously not getting the ultimate care available at present.

How's everyone doing this week? I am popping those lozenges and gum like M'n'Ms to try and douse the flames in my mouth.