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!

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.

Charting your progress

One of the best ideas I ever came across was keeping a pain chart to track your recovery. The reason this is so helpful is because your definition of this is "the worst it's ever been" may change over time. It is VERY easy, on a bad day or pain flare-up, to be terrified, to think "this will never go away!", or "I'm getting worse, not better!", and to overlook the fact that, as bad as the pain is now, maybe it used to be worse. Which should in some way make you feel better about those invisible nails being driven into your tongue. LOL.

OK, I'm not gonna sugarcoat it - there are going to be really bad days, or pain spikes as I call them... but over time, the peaks will very gradually be lower. I don't know if they ever go away completely. I'll let you know when and if it happens for me.

So here's what I did: I developed a very simplistic graph, an X,Y axis, with 0-10 (indicating pain level) going up the side and the date going across below. Every day I indicate the pain level I am experiencing. I have this diagram of mountains that have gone from looking like the Himalayas to the Rockies to lower, gentler mountains, like let's say the Appalachians...for what it's worth, this gives me peace of mind and reassurance that, even though it doesn't feel like it, things ARE improving. It just takes for freakin' ever....

You'd be surprised how something so silly can really help. When I am having a bad day now, I look back and realize how much better "bad" is than it used to be, (how much higher the number was on the pain scale) and it gives me hope that this trend will continue. Though, as I've said before, this recovery is not a linear thing...there are many ups and downs, one step forward two steps back, and many days you'll wonder if it will ever get better. It will.

It's also useful to keep track of what may have prompted the pain result each day, especially if it's a particularly good - or bad- day.... Loud? lots of talking? Stressful day? Rainy? Cold? Windy? New meds, vitamins, or treatments? What you ate, drank? etc... Over time, you should be trending downward, and your spikes shouldn't be as high.

Things have also changed for me, whereas at the beginning I had a clamped feeling on the left side of my tongue, and my left cheek felt constant pressure, as if someone was punching it, and the tongue burned from tip to back along the left edge... now the pain on the tongue is more widespread - all over- and not as severe most days. All of my original symptoms have lessened, while some new ones have appeared. But the new ones aren't as high on the pain scale. Still annoying as crap, but historically speaking, not the worst it's been.

If you try all the vitamins, meds, and alternative therapies I have recommended and don't notice any discernible improvement after 60-90 days, you need to see a specialist, ASAP. The longer you wait, the worse it is, because your brain learns to live with this neuropathy, and comes to think of the pain as normal, instead of no pain being "normal".

Meanwhile, get yourself some Oragel, some gum, and whatever else works for you, to help you cope during the tough times. You will get through this. Hang in there.