Wednesday, June 30, 2010

We now have a Facebook page

Please add Jane Fisher - Lingual Nerve Injury to your friends - have found some new people this way who may have information to share or be helped by this blog.

Friday, June 25, 2010

Foods that help stop the burning

Sometimes you crave certain foods when you are feeling down (comfort foods like ice cream) or dehydrated (grapes, watermelon) or pregnant (um, I have no explanation for that one!), I have noticed I feel regular cravings for foods that temporarily cure the burn.

Interestingly, these are some of the same things that are recommended to stop the burning of hot peppers or spicy food. The capsaicin in peppers is an alkaline oil, and needs to be counteracted to stop burning. Foods that do actually help temporarily stop the burn without the need for pharmaceutical intervention include:

Sugars- Bananas, apple slices, marshmallows (the big kind), dairy products
Fats - spoonful of peanut butter, cheese, cheesecake and chocolate milk (a 2-for-1, sugar and fat) Well, I never promised you'd lose weight with this injury.
Starches & Carbohydrates - bread, tortillas, rice, mashed potatoes, cornbread
Acids - lemons, lemonade, oranges- while these may burn themselves,, their interaction with spicy foods cools the burn

What makes it worse: alcohol, soda pop, salty chips, dry mouth, very cold water.

I read on another site about the brave guy who ate hot peppers for two weeks straight and states he's finally cured himself of the burning. I am way too much of a wimp to make that attempt, but if it has worked for you, I'd love to hear about it.

I hear there are also capsaicin "candies". Oh, joy, I can't imagine the feeling of sucking on that all day. The theory with this therapy is that the use of these hotly spiced candies depletes the substance P, which is the neurotransmitter for pain. The active ingredient is cayenne pepper. Curiously, capsaicin is also thought to be an anti-inflammatory. Hmmm.

Testing this theory (which you know I can't resist,) I had tortilla soup today and, I must say, afterwards felt a markedly reduced pain sensation of the tongue for a little while. Wonder if I have the cojones to do this every day for 2 weeks, and if it will "cure" me? Stay tuned....

Tuesday, June 15, 2010

Newly injured or not, I feel your pain

I have so much empathy for some of those who've been suffering with this injury for years. I cannot even fathom going through this for another month, much less years.

While this horrible pain has caused immeasurable disruption to my life, I sometimes feel I really have no right to be complaining "only" 6 months after my injury, when there are others out there who've been suffering (often in silence) for years.

I do all this complaining, whining and "kvetching" not just to vent, blow off steam, and commiserate with my fellow sufferers, but also to hopefully exchange positive advice on finding relief.

My brain is in a constant battle with itself these days; I spend half the time feeling hopelessly, "I just want to feel normal again!" and the other half thinking how lucky I am just to be alive, and to quit complaining already. It's not cancer, after all. It could be worse. But that doesn't mean it doesn't still suck.
Can you relate?

Some of the really long-term sufferers can be found on World Law Direct, if you are morbidly interested in hearing their stories. I am. I am always interested in anyone's story, especially those who've eventually recovered. It gives me hope, that as I sit here typing, my mouth in "flames", the side of my face and my temple still aching, I know that someday, this WILL get better.

Saturday, June 12, 2010

At 6 months, starting to feel like a "lifer"

After reading that if you aren't healed in 3 months, chances of this being permanent are likely, I must say at this point, I am one of those victims, but I still hope in time things fade more, as they have for others. Everyone feels pain differently though. Everyone's story is slightly different, and each, so unfortunate. It really helps to hear from others who've been though this, for me at least.

Funny thing about this injury, it is maddening trying to figure it out. On the one hand, I still have pain from simple things like putting on sunglasses - when the frame crosses over my left temple, I wince- still, 6 months after injury. But the chewing on broken glass feeling subsided long ago, never to return, however was replaced by other annoying symptoms - all less painful, but painful nonetheless.

The stinging now is sometimes at the left tip of tongue, but generally it's the overall rugburn more all over the middle of the tongue. The teeth ache and sometimes smiling still hurts.

It is hard to go about life cheerfully and I can't help but look around sometimes at all these people who don't realize I"m in pain, but I can't keeping whining about it all the time. I think, how lucky they are to lead these "normal" lives without their mouth on fire all the time...they have no idea...

I already have low blood sugar issues, so notice it is a really BAD IDEA to go hungry. But, I hate to eat when my mouth is quiet in the morning. So I put it off...until I'm ravenous, and the pain fires up right along with the hunger. Sugar may be a culprit, but not nearly so much as STRESS. That has to be the #1 thing. I feel the least pain when I'm so sleepy I'm nearly dozing off - the nerves must just be so relaxed at that point.

I am STILL having pain in my root canals months later, and was told by my latest endodontist this is not normal, so I am going back to the endo who did the first root canal next week. I was told not to have crowns put on til everything "settles"...LOL...can they possibly understand how "unsettled" my mouth is, and has been, for months on end? I don't know when I will ever be able to finish this dental work, and am just trying to be very careful not to chew anything sticky or have anything on the left side of my mouth.

I still haven't found a job, in spite of many close calls and promised offers. My daughter is starting college, so I've been wrapped up in those events, and the stress of having your firstborn and best friend leave home is overwhelming. Trying to act happy and positive around her, but sometimes I can't hide the sadness.

Keeping busy is a distraction, but I am still having to take at least one vicodin to get through the day or I am a bitch on wheels, because of the pain. I'm in big trouble as it seems that prescription runs out sooner than I will recover, and doctors don't like to write prescriptions for narcotics.

I was told by yet another attorney that this is the risk you take any time you get an injection, and though she greatly sympathizes with me (she really does), you cannot sue for malpractice just because the dentist is a jerk, who wouldn't admit he'd caused the injury, nor treat it, in fact, may have even sent me on a wild goosechase trying to keep me of his back, until I realized it was his fault. I plan to call him and meet with him, if he'll agree to it, to show him the stack of medical bills and 2 gallon sized bag of meds, so that he should know what he did. I don't know why, I just think it will make me feel better. By the same token, that meeting will be so stressful for me, I just know it will be a horrible day of burning tongue. And so it goes...

I'm taking a little Advil as the endo recommended it as anti-inflamatory, as well as daily doses of vitamin B in the methyl form (because it absorbs better but, of course, is more expensive than the cyan version). That attorney I mentioned spoke with a dentist friend of hers, who knew of lingual nerve injuries, but had only caused 2 in his 40 year career, and he recommended going back on the B for nerve healing. I don't see any change yet. If I could afford the laser, I'd go back to that, because I do think it was helping.

Wednesday, June 2, 2010

Eeeerily quiet, but why? Just freakin weird.

Wish I could say "hallelujah, I've found the answer!" But no. Just the least amount of pain I've had, maybe since this thing started; I was probably a 4-5 in pain all day, except a few choice moments when I talked too long on the phone and had to grab water several times. I've taken a couple ibuprofen the last few days, other than that, I'm taking a fish oil pill now daily plus the traumeel and lymphomycite or whatever the heck it's called - it's for healing. Haven't had laser in weeks or acupuncture in months. Had a glass of watered-down wine last night with dinner.

When I found myself getting stressed out talking to the unemployment bureau, yet again, about why they still won't pay me any benefits, the tongue started to burn - I consciously tried to calm myself down by reminding myself that I'm so much better now. It's like a mantra I repeat when the burn gets going.

With all due respect to the Beatles..."it's getting better all the time...better/better/ better" Though, truthfully, it's hard to convince myself of that more often than not. I've been feeling that I've plateaued, and will be like this, with those evil bad days coming back every few days, forever. But today was a good day. A really good day. How to bottle it - wish I knew.

And now, for the TMI portion of the blog, (fair warning for those that don't want to know), last time I had my period I got a wicked migraine and was waiting for it to happen again this month. Instead, it arrives and I get a day of greatly reduced pain. No clue why. But I will continue analyzing the cause and effect to see if I can determine how we can all live at no more than this level of pain always.