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!