Sunday, May 30, 2010

And back to burning again...

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

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

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

Thursday, May 27, 2010


...I'm almost afraid to say this out loud, I don't want to jinx it, but as soon as the uncontrollable fire came yesterday, it went away today. I woke up today feeling surprisingly the day progressed, still good...hmmmm...even on into evening and - wow, this is really an improvement! Back down to rugburned feeling.

Like, I didn't even get relief yesterday after two whole 500 mg vicodin, .75 Klonopin, and a Cosmo cocktail for good measure (the last one suggested by my son, who I think was going to punch me if I said one more time "my mouth is on fire!" I don't drink much these days.) But today - I didn't have to take any of that; I did, because I am testing a theory. I took .25 Klonopin 3x spread out throughout the day, to see if having a stead stream of it would make a difference. But I couldn't tell because I was already having a good day anyway. Won't I feel silly if all this analysis and experimentation is a waste of time, because none of it has any effect anyway.

I did take 2 ibuprofen both yesterday and today for inflammation, which I don't usually take, as well as extra doses of the two homoepathic meds, plus brought back the Alipoic acid/acetyle pill (one), and added one Omega 3 to the mix. Too soon to tell if any of that could really have quenched the fire so randomly.

I am thinking less and less that particular foods (sugar) has anything to do with it, because on good day I can get away with a lot; on a bad day, NOTHING gives me relief, no matter how bland. But I do think caffeine, being a stimulant, is an obvious nerve trigger, so I do avoid that. Other than that, heck if I know!

Up too late again tonight, but at least this time it's not from the pain. 1/2 an ambien is in order.

Tuesday, May 25, 2010

The burn returns

I'm on fire today, sadly, after some of the best days I'd had since the beginning of this thing. Just another reminder that this isn't nearly over, and may never be. Unfortunately, my discomfort extends beyond the tongue (burning) to teeth and even cheek still aching. I realize that for most people, the tongue seems to be the predominant problem, I wish it was my only one... it is definitely the most unnerving!! The fact my symptoms are so widespread does make me worry more that the trigeminal nerve has been affected, and honestly, no one knows what lies ahead if that is the case.

I have slacked off on the B vitamins and acetyl Lcarnitine as I'm just plain tired after swallowing so many pills in the last 140 days, and stopped the cold laser treatments due to finances. I also haven't done acupuncture in a month, because the relief is temporary and insurance does not cover. I did start taking Omega 3 today but that is one big a** pill to swallow. Haven't had a chance but want to follow up on kritty's recommendation on mega dosing with vitamin C powder, just haven't known where to start, perhaps GNC or the Vitamin Store??

Seems the meds aren't even working at this point, the only real solution is topical benzocaine or Oragel several times daily. Passing this on to those who, like me, may be at their wits end when nothing else seems to work. I'm back to having trouble sleeping because I can't shut the fire off and my mind races.
Suggestions always welcome.

Monday, May 24, 2010

Curiouser and curiouser

To quote from Alice in Wonderland, who I must say I feel scarily related to these days,
"Curiouser and curiouser!” Cried Alice (she was so much surprised)....."And she went on planning to herself how she would manage it."

Like Alice, I'm at a loss for the right words, and wondering how to manage things.Today the feeling is one I can't quite describe, except to say it feels like my mouth is...freezer burned?!

It's as though I've been pressing my teeth into something ice cold all day long, and the entire mouth from tongue to the roof freezer burn, if there is such a thing. Even chewing on the right side hurts today and my injury is on the left. Hmmm.

Good ol' clonazepan doesn't help at all with this stinging. So the pain, annoyingly constant, and none of my usual remedies worked. I need some new magic tricks for this new kind of pain! It's so distracting, probably because I can get a handle in it - that old control freak thing again.

As those who follow the blog may know, I had initial work on 2 new root canals done recently, only now they aren't so fresh and new, as I've been avoiding dental work like the plague. One has had a "temporary" crown on it since about February (supposed to be on for 2-3 weeks). The other was a re-do of an old root canal - that one still has the initial filler they put in your tooth before the gutcha percha cement type stuff. I have an appointment to finish out that one next week.

So I've been walking around in limbo like this with lots of unfinished business going on in my mouth for months.

What concerns me, for those of you who've got knowledge of root canals, is that those teeth still hurt when I touch them. Even if I just press gently with my tongue. And of course biting down is a very bad idea. Since they've removed the nerves in these teeth, shouldn't I feel nothing by now????

That's the bad part, now, the good:

As opposed to weeks past, I can happily say my left ear, while still highly sensitive, at least no longer seems to give me those stabbing earaches. Out in public I find myself having to dodge stereo speakers. I'm like a grandmother because I constantly am bothered by piped in music in any public place. Is it just me, or is it really TOO LOUD in here?!

I'm taking the fact that my symptoms are changing to be a sign of progress. No, they haven't subsided, but they are...different.
Yet someone reminded me recently that, if you haven't recovered by 3 months, you are quite likely looking at permanent damage.

I, being the stubborn, rebellious sort, refuse to believe that I am just screwed up for life, and am still holding out hope that this is a trend overall, and my symptoms, at 5 months, are ....evolving. I hope the old (crunching glass, etc.) symptoms that have been replaced by new ones aren't just on vacation, til they return with a vengeance, as so often happens

Monday, May 17, 2010

The calm after the storm

The fiery burning of three days ago has quieted down. In fact, I can say that I have felt the best I've felt in the past 4 months these past two days. Am I cured? Hell no! But, I have had a few headache-free days which is critical - those headaches are killer. My throat is mostly fine, my ear is down to probably a 2 in pain, I also have more energy.

The worst still continues to be the "scraped along the sidewalk" feeling on top of my tongue which increases later in the day-evening.

But considering all of these pains were in the 8-9 range for a very long time, I have to say improvement has been made, though slow. I wonder how much is the Pamelor finally kicking in, and how much is just the time factor, with the nerve healing finally coming around. Then there's the homeopathic meds and the light therapy, could that be the key?

The Agatha Christie in me won't stop trying to figure it out. I want to be able to solve this puzzle so no one ever has to suffer like this again. It scares the crap out of me taking my kids to the dentist now, and everyone I know has been warned to not take their dental visits so lightly anymore.

When I think back to the early days of this condition, which I know some don't like to do, it actually makes me feel better to see how far I've come. Those first 3 months were horrific: feeling like my face/cheek/teeth/tongue were in a vice grip, migraines daily, couldn't tolerate any light or sound, literally had to write notes to my kids most nights because I was in so much pain my tongue couldn't take it any more...that was hell on earth.

That is the reason for this blog. With inspiration from Kevin, Imogina,, scalpel and sword, and others....I just knew I had to tell my story, in the hopes it might give others who are in the early stages hope and reassurance that things do get better. I just hope one day this story has a happy ending where I announce "guess what - I'm healed! I'm 100% back to normal" I don't see that happening any time soon, but this injury has changed me; I don't have such high expectations any more and have stopped saying "why me".

The positive result has been that I look around and see so much more clearly how much everyone is dealing with some kind of pain; be it emotional, physical, or both. At some time in your life, everyone suffers. And, eventually, we get better, we move on, until the next thing happens. But then we are that much better prepared to deal with it, because now we know we can, we have - and we lived to tell the story.

Many have asked about suing the guy who did this to me. I will just say that the thought has crossed my mind, and is being investigated. However, that won't make my pain go away, and the chances of winning might not be good. The stress of a case is the worst thing, of course, for me in my present condition. So, we'll see. I'd be very interested in hearing about any lingual nerve cases that have been successful for the plaintiff. It's not the amount of the settlement that matters so much as the fact that someone got away with this.

One dentist said to me "it's a risk you take, every time you get an injection". OK, my answer to that is this: every time I cross the street, I take a risk, a risk that a car might hit me. If someone does hit me, even by accident, then flees the scene, accepting no liability - it's called a hit and run, and it's illegal. What my dentist did to me feels like a hit and run. He doesn't admit any blame, has offered no assistance, and in fact, may have even intentionally misled me by telling me I had BMS and "allergies", hoping that I'd be one of the many who recovers rapidly (in a few weeks) and I'd just go away; he'd never have to hear about it again. Only, I'm not most people, and that's not what happened.

My dentist trained at NYU - that is no rinkydink school; there isn't a chance he doesn't know about lingual nerve injuries..this makes me think he was just dodging me every time I called his office. I may never know, and it's not productive to focus on it so much of the time, so I try to avoid it. Still, getting him to at least cover my medical bills would sure feel like justice had been done.

Off to take my meds!

Saturday, May 15, 2010

Firing off again

Welcome kritty and thanks so much for your contributions - you have really done your homework! Nice to have you on-board, and hoping you find relief SOON.

Yesterday was lots of stress, and the burn just seemed to build all day long, even after midnight was still raging.

Sometimes morning can be so bad, I'm taking vicodin before even getting out of bed, but then end up with a surprisingly mellow evening. But sometimes, a quiet morning turns into fiery afternoon and evening, lingering right up to bedtime. Lately, on these days, no matter what I do, I can't seem to get any real relief for any length of time.

Does anyone else have the pale, swollen tongue, with teeth marks? I've had several practictioners remark on my tongue, and when I wake it feels like I've been pressing it against my teeth all night long. I asked for a bite guard, but was told to try the Pamelor first and see if it helps.

I am typically anti-meds and this feels like just another case of a dentist turning someone into a junkie. We shall see...I am going to try kritty's suggestions, including the mega-dosing of vitamin C (although when I'd mention this to homeopathic/acupuncture practitioners they poo-pooed it) I am having to increase my dose of vicodin. It can be addictive, and causes side effects like constipation but other than that, pretty mild stuff, as it's mostly acetominophen (Tylenol) in very high dosage.

I observed again the burning may be made worse by sugar and talking (went to a house party), and I had an alcoholic drink. Coincidence? Maybe.

I am wondering why the Pamelor isn't helping yet, but maybe it just takes more time to build up in my system. I'm now on 2/night. It is making my heart beat fast, I feel depressed and listless in the morning. I looked it up and found it's supposed to have no real effect for 14 days but. I'm hoping if I stick with it, things will improve.

I'm still taking homeopathic meds Traumeel and lymphomyosol (sp?)and on my last 15 mg Mobic as antinflammatory. Sick of spending money on and taking meds!!

Hope everyone has a pain-free day.

Wednesday, May 12, 2010

Odd feelings and new meds

Now I understand, for the first time, what that "rug burned" feeling is on the tongue that I've heard others describe. The tongue feels sort of scraped, and hot, all over, without the sharp clamping or chewing razor blades feeling of the first few months. I am confused about what to do, as the lozenges and gum don't seem to be helping for this type of feeling. My teeth hurt too, as usual, where the root canals were done. With these two symptoms in hand, I met with my Dr. at the orofacial pain clinic - I hadn't been back there in a month because I frankly just coudn't afford it anymore, though they were wonderful and so supportive. Really the only medical professionals anywhere I've found that I trust.

My dr. put me on Pamelor (aka Nortryptilene) a tricyclic antidepresant which I started last night. I'm very against antidepressants, as I can't tolerate the side effects, and I don't want to just be hooked on something to forever numb the pain; if I'm taking something, I want it to be because it helps the pain go AWAY, not just distract me from it.

However from what I'm told, there's no medication that actually does that; the best we can do is to try to make the pain less noticeable while we wait. And wait. And wait. For that day to come when we feel completely normal again.

Medication regime is to start with one 10mg pill at bedtime, working up to 4/night eventually. There are supposedly few drug interactions or side effects at this level, which I was told is below the actual level I'd be taking if it were for actual depression. I'm skeptical as always, trying to remain hopeful as I can be. Anyone taking Pamelor with success?

If you are a lightweight, like me, oversensitive to every little thing, you worry even more about new meds. And since this injury started and I am taking very small doses of Klonopin still, I'm constantly falling asleep at the drop of a hat. For instance, every day around 1pm I get a wicked headache and the ONLY way to cure it is to lie down. Sitting up becomes unbearable. Now, in the old days, I could lie down but never have fallen asleep - but now, I'm out in minutes, and fear oversleeping an appointment or picking up the kids at school. How on earth am I going to work in an office in this condition?

Waiting -wishing-wondering - hoping.

Monday, May 10, 2010

Surprisingly better, and theories as to why

OK, I have NO logical explanation for this, but just so you know, out of the blue, I felt better again today. Yay! This makes no sense, as I had an important job interview that meant a long drive, stress, and talking for 2 hrs straight. Should have been a really bad day, painwise. Did it hurt? Yeah, of course. It always hurts! But, compared to the last week, so much less.

I do think a positive attitude makes a difference. Yesterday I spent mother's day with my sister and her family and honestly, just getting out of these 4 walls and having fun with the kids was enough to help me feel better. Thinking about the injury never actually goes away...probably never 30 mins goes by that I'm either feeling the pain - or noticing that I'm not feeling the pain.

Looking forward to the day I stop thinking about it all the time! That's why keeping busy is good - busy with productive things that make you happy.

When all else fails, and you are just like WTF, why me, when will it ever end, wah wah wah (cue the violins)... I recommend the ridiculously hilarious LOL Cat videos - look them up on YouTube. One of the few things that can get me laughing out loud in my current condition. I don't know why, I just love those funny captions and cat photos.
Let me know what you think!

Thank you to those of you who have starting contributing to the blog - sorry you are here, but so glad you are, too! All of us folks with this crazy burning tongue thing gotta stick together. You are not alone - it is real - a real pain in the a** is what it is - it is a constant distraction and that fact that it is "invisible" to others sometimes only makes it worse. But there ARE people out here who do understand, and do care.

Saturday, May 8, 2010

More coping tips

Here are some of the many ways I've adapted - I don't even think about these that much anymore, they've just become a part of daily life. A lot of this will help those with BMS (burning mouth syndrome) as well.

I use an extra soft baby toothbrush instead of a regular adult version.
I use Biotene dry mouth toothpaste, just about the mildest paste you can use.
I rinse with Biotene dry mouth rinse after most meals; just feels good to remove remnants of food and "neutralize" the mouth again.
I constantly keep room temp water with me - in the car, on the night stand, in my briefcase - everywhere.
For some reason, weak tea often irritates my tongue less than just plain water.

Stick with soft, bland foods, and focus on protein; you'll need it to keep your strength when you don't feel like eating much.
Best bets: oatmeal, eggs, cream of wheat, chicken, turkey burgers, baked beans, mashed potatoes, macaroni & cheese, soft breads like croissants, fruits, cottage cheese, overcooked veggies (soft enough to eat). I can eat Jello gelatin, but for some reason the pudding stings.

FOODS TO AVOID: chocolate, coffee, frozen drinks, fizzy soda pop, garlic, peppers, ice cream, bacon (too chewy- hurts my teeth), OJ, tomato sauce and spicy, salty, fried, or crunchy anything. Yogurt and smoothies bother me too. If you are a big Doritos or Fritos person, sorry Charlie, those are out (I'm not, but pita chips are a favorite - not good).

There are days I know I just have to push through this and say, the heck with it, I'm gonna eat a damn salad, even if I do have to cut it up in tiny little baby bites, and it takes me twice as long as everyone else at the table. I can tolerate Ranch dressing but balsamic vinegar is a killer for the tongue.

Most days, the best I can manage might be chicken noodle soup and mac 'n cheese. Some days my teeth hurt more, some days it's my throat, sometimes it's the tongue burning - the jaw, the head, the ear, etc.... As these change, the foods I can tolerate change too, depending.

What I have to remind myself of is that, as uncomfortable as I am now, I went through about 12 weeks when I couldn't even wash my hair or face without it hurting - this made for many, um, interesting looks. Applying makeup over the cheek area was impossible but it didn't matter, I wasn't going to wear any; I had no social life anyway; my ears and head couldn't stand any noise, couldn't drink alcohol due to the meds, couldn't talk without pain, and couldn't raise my voice above the noise in a restaurant. I still can't go to Costco - I don't know what it is about that florescent lighting and warehouse feeling, but it just makes my head feel like it's going to explode the minute I walk in.

It was too painful to pull my hair back in a ponytail for three solid months, but I can do it now if it's a loose ponytail. I love live music but that's out... just think how much money I'm saving on rock concerts.

These tiny accomplishments like being able to wash my hair again are easy to forget, and important to remember, when you're on the 118th day of pain, and it seems like you're getting nowhere.

Thursday, May 6, 2010

Burn, baby, burn

The tongue burning today is as bad as it has ever been. Reminds me of 2 months ago, before I even knew that I had a diagnosis of lingual nerve injury from a dentists's injection, and at the time I didn't have any meds to help. But now I do have meds, and even those didn't help: tonight not even clonazepan could stop the burning, nor salt water rinse, nor honey, nor OraGel, nor lozenges....nothing!!! Scary.

Possible cause is a perfect storm of weather (rainy), to much sugar (birthday cake, etc.), too much talking (volunteered for school field trip today), getting my period...whatever the cause, this just plain sucks. Of course the teeth are aching as well, as always, that is a constant. But the tongue had gotten so much better, and this is a big setback that's a big worry and disappointment.

Probably not a good day for me to be posting on the blog because I don't have anything positive and uplifting to share. Hopefully the next few days will be dramatically better...

Tuesday, May 4, 2010

Afraid to eat

This is one of those days when I'm afraid to eat, and here's why.... When I woke this morning, I felt ok, but then after speaking with others in necessary conversations, the tongue started really stinging. As soon as I had a chance to take a break, I made some weak tea with honey. That was a big help - I also had a Bee M.D. honey throat drop. Even better. By 11am, I was basically pain-free. Wow! Problem was, I hadn't eaten anything yet, and was starving. It's the weirdest feeling - knowing you need to eat, but wanting to avoid it, because you don't want to change the temporary happy quiet of your tongue.

As it is, my menu choices are already extremely limited, and I'm already seriously underweight. Diagnostic testing at the orofacial pain clinic showed that I feel things twice as much on the left side of my mouth and face as on the right. So every taste, sensation, feeing - from the wind blowing to spicy, salty, caffeinated, or crunchy food - is like SUPER intense and hard to tolerate. Ice cream and smoothies are big favorites but hurt so much now, for some reason coldness is very irritating, so ice cream is out.

Every single meal has to be planned, thought out, bland and boring...add to this the difficulty chewing, and some of the meds I was put on killed my appetite. Put all of that together, and I find myself about 10 pounds shy of what would be considered a healthy weight.

I have been chewing on the right side only for 5 months now. Five months! I'm starting to wonder if my facial muscles are going to permanently change from this. I did notice my left side drooping 2 months ago, and asked the Doc, thankfully Bells Palsy was ruled out. But I started doing physical therapy for my buccal muscle of the cheek/face, and although it's uncomfortable, I think it's helped "reactivate" the left side of my face, muscle wise.

(Nerve wise there's already wayyyy too much activation going on!) So, I finally ate a sandwich and some cold slaw for lunch, but now, of course, the tongue is burning again. Sigh.

Monday, May 3, 2010

1 step forward, 2 steps back

OVERCONFIDENCE - Just when I started getting a little too smug about the good progress I was making in my recovery, I took a turn for the worse yesterday. I don't know why, but I've had a definite setback...tongue has been really on fire for two days straight, worse than it's been in awhile, and today I'm getting those old migraine-type symptoms that I haven't been bothered by in several weeks.

Today I'm extremely, overly sensitive to light and sound (keep having to ask my daughter not to talk so loudly - she thinks I'm psycho - when the phone rings, the noise makes me JUMP!). My head really hurts (only on the left side), my teeth feel like a drill is boring into them, even my throat (which has been completely fine for 2 weeks) is burning on the left side, about the middle of my neck.

Obviously, normal daily activities are more challenging on days like this, even looking at the computer screen is tough, and my temper is short with the kids because I don't feel well.

IS THIS A CRUEL JOKE? I'd had a few good days in a row, giving me a false sense of hope. I thought I was closer to 100% recovery than I really am. I thought I was seeing the light at the end of the tunnel. I guess I knew I was due for a setback, but was hoping maybe, just maybe, I'd seen the last of those wicked flare-ups. Wrong!!

This new pain spike could be related to my monthly cycle maybe? That's all I can think of, (hope that's not TMI) since I haven't really altered my regime of medications and vitamins, the weather is warm and sunny, and I haven't had that much more stress, except perhaps for finances, as the co$t of this injury just continues to add up and the lack of paychecks is making my checking account run down....

Adding insult to the injury is the fact that I had so many straight weeks of extreme pain and daily doctor visits that I lost a well-paying long-term contract job (which suddenly became short term after my dentist did a number on me) now, I'm paying the consequences of the lingual nerve injury while being unemployed. It feels like my medical bills are this huge mountain, and I am trying to climb in high heels. The irony is, before this, I never got sick... I literally haven't had even a head cold in 2 years...

Because I have such excellent health typically, I am lucky to maintain health insurance on my own (since I'm unemployed) but the catch is, that insurance plan has a $2500 deductible. Who could have predicted a simple dental appointment could have turned my medical, financial, career and social life upside down to such an extent?!

After having 4 cold laser light treatments, 2 days apart each, I did have a big gap of 5 days. I went today, and will go again in 4 days. Soon I'll have to stop those, too, though, too much money going out with none coming in.

UNCERTAINTY- the problem with this injury is that few people have heard of it, the pain is a constant reminder that you haven't recovered, there is no magical "cure" other than time, and you never really know if you will continue getting better, or if you'll be one of the reported 15% who never actually does recover. On bad days, it's easy to feel like that 15%. On good days, there's more optimism. Right now I have to focus on the fact that what goes up, must come if the pain is spiking now, that means it will come down in a day or two. Let's hope!