Answers re: dental injuries

First, the news: New discovery this month- my latest addiction are Halls sugar free lemon refresher drops- only the lemon variety. Don't ask why, it just helps reduce the burn. At first it burns a bit more but...wait for it... if you get through the first few minutes it does help. 
I DO NOT, however, recommend Altoids or any form of mint, eucalyptus or cough drops with all that junk added. Placing peppermint on an already burning tongue is just asking for trouble!
Now for a personal reveal: I have a major guilt complex- Ready? OK: I want to answer every question and have a complete dialogue with every person, individually. But I don't always have the answers. I read each post and feel for every one of you, though I can't always individually respond (especially to anonymous posters).

PLEASE dive in and comment/respond - I am simply a moderator, I'm not by any means the only authority. Your personal experience and comments are valuable!! 
Or, to quote the great Jerry Maguire: Help me help you!

Because this blog can be cumbersome, I started the Facebook page - if you don't want your friends seeing your posts make another FB page- it only takes 2 minutes to create a second FB page with a made up name that is just for communicating with us in the pain world. Add me as a friend: Jane Fisher (dental disasters). It's much easier, technologically speaking, to post and get questions answered there than here. You can email me there, too.

The more we all share our experiences and put our heads together to brainstorm, the closer we can get to finding answers and cures. Sure as Hell no one else is working on it...maybe WE can have the breakthrough.
I hear new stories at the rate of several a month, and I am convinced this is only the tip of the iceberg. 
If we had more publicity, and others were not being misinformed by their confused/puzzled/scared doctors, I think we'd find TONS more sufferers like us.
Thoughts?

Getting into hot water...literally

One thing I find helps relieve the pain that I wanted to share with you is really basic:  hot water. This can be experienced as a nice hot bath (one of life's greatest pleasures) - lean forward and sink your face right into the water...it really does help. Swish warm water around in your mouth, that's a good one, too. The relief is temporary, but it's natural, and it really does help. During the work day try hot tea if you're going to have a day with a lot of speaking, but make it decaf; caffeine and sugar stimulate the nerves and ultimately pain will be worse 30 minutes later.

So this week I find myself in hot water again, after being laid off from my job in a reorganization. Yeah, here we go again unemployment yada yada. I could actually use a little downtime to get my personal life in order in the aftermath of a horrid divorce. A job is just a paycheck; I'll find another one. In the meantime, I have more free time to brainstorm with all of you what we can do to stop the dental community from butchering others, with zero accountability.

We need a way to enforce safer methods, and to hold doctors liable for injuring people. Not sure if this means forming a non-profit to bring attention to the cause, writing a book, producing a video or what...if you are willing to participate in the Pain Project (for lack of a better name at present), and have ideas of how we can get attention for our cause, send me a message. Don't forget we also have a Facebook page, under Jane Fisher/dental disasters.

I want to see the dentists in hot water for continuing to ignore/deny that this is happening to people every day, and for their cavalier attitude.

Is Cymbalta the answer?

SEP 2011 - It seems I have turned a corner. While I can't say I've recovered, I can say that I now see significant improvement over the course of the past month. I'm taking Cymbalta 30mg for the nerve pain, at about 11:30am. That way I'm not a zombie during the workday, but feel sleepy after 10pm or so.

Sleeping itself is very disrupted - like your brain goes at warp speed when you are trying to shut it down; I am very reliant on Ambien and wake regularly.

As opposed to the Lyrica and Neurontin, which each gave me terrible brain fog, fuzzy vision, memory lapses, and all day sleepiness, Cymbalta keeps me more sharp, clear and focused. Yes, I still yawn a lot, but once I got used to it (after about a month) I stopped falling asleep in boring meetings. Well, mostly. haha

I've cut way back on klonopin. I no longer need it every day. Nor do I need the topical benzocaine every day; in fact, I'm no longer carrying it with me like a life preserver, as I did for the past 26 months. I do have setbacks still; typically on days the weather changes, and tense/stressful days. But the burn I feel on those days is no longer the norm, it is FINALLY the exception; maybe 1-2x/week.

I can't tolerate the cold any longer, that really ramps up the pain. I have business trips to cold locales during the winter, so that's a problem. The rest of the year I'm in the South so it's ok.

I'm sharing this info with you to give others hope that when all seems hopeless, there is still a good chance you will improve in time. For me, it seems to have taken far longer than for others. I can't say why. I still have pain level of 4-5 most days...but considering I was 8-9 for nearly 6 months, then 6-8 for nearly a year, it's a definite step in the right direction. It may be the best I ever get. I'm now at 2 yrs 9 months past injury date. Hard to believe

I do hope to get off the Cymbalta in a few months. Right now, I have too much going on to toy with withdrawal symptoms and the posssiblity of pain returning. But I'm hoping this little pain holiday retrains my brain to teach it that pain should NOT be the normal way to feel.

How is everyone else doing?

Back online with new posts and updates

APRIL 2012 - Hi folks, I apologize for neglecting my blog...I actually had trouble logging in due to 2 conflicting Google accounts, and finally found the time to figure it out today. So you will see about a dozen new posts from people who tried to post previously, and I was unable to publish their comments.

I've been through a great deal since August/Sept. I got off the Cymbalta in December - didn't like the side effects. Ironically, though, the pain has lessened so that even when I went off the Cymbalta, it didn't get more painful as I feared ...the pain leveled out at the same place. I don't know if my theory on breaking the pain cycle temporarily to "re-set" your brain may have actually worked.

While I still have pain every day of my life, it's nothing like it was. I want to let people know that there is hope. Doctors are always surprised to learn that I'm still recovering after 2 years, but there you have it.

An important component of this is accepting it, and determining that this is now how you live, and you can deal with it. No, your life is not the same as it was, but you will adjust. Realizing that you are now someone with nerve damage, and I can't allow it to take over my life, seemed to help me with coping and acceptance, but the lessening of pain over time is the #1 helper. It's hard to think about ANYTHING when you are focused on pain and burning all the time.

I still rarely tell anyone about the injury - no one at work knows. I still have deep pain in my upper teeth all along the left side from front to back that I don't know what to do about. I take a small amount of pain medication still, daily, to keep my cheerful disposition!

My tongue still burns every day; less in the morning and building til night time. The throat pain is rare now. The ear pain is sporadic. Headaches - yes, still have those, and wearing a ponytail still makes my head sore. Trying to remember not to be tense, and to loosen my jaw, seems to help. I still cannot lie on my left side because it hurts my face too much; I have to sleep on my back or right side. That's annoying.

I have still never returned for the crown I need to get on my temporary root canal from 2+ years ago; I'm too scared to make things worse.

I'll write more when I have time. Just wanted to let you know I'm back online so please continue to  share your stories!

Quieting down

In the past week I've noticed significantly less tongue burning. I can only hope this is a permanent thing! Not sure what to attribute this to, except that maybe the Cymbalta I've been taking for about a month is finally kicking in.

There is definitely an adjustment period with any new med, and it's tough to sticking it out waiting for the results. At first I had night sweats but that quickly went away.

I take a measly dose, 30mg,, once/day around 11am. (Doc would like me to take 60mg) It makes me yawn a lot during the day, and have very active dreams when sleeping so I don't feel rested, but does seem to be helping with the nerve pain.

Those side effects are kind of minimal compared to some of the other drugs I've tried. I am using much less Clonazepam and topical Lidocaine because the burning is mostly under control, except for the times that I'm super stressed/anxious.

Let me know if you're taking something that's working for you.

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