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.


  1. I tried Nortryptilene for a while. I used it only at bed time as a sleep aid. I think it worked but absolutely nuked my libido. That was the only side effect but that was significant enough to want to get off it asap.

    Have you tried Oxycodone? It is very addictive for some but seems to help with the rug burn a bit. I only take a small dose in the evening maybe three times a week if that.

    Jane, if I can return to teaching you can get back to that office... when the time is right.

  2. Kev,
    Thanks for that re: oxycodone. Hydrocodone helps, usually one/day, lowest dosage; yet, I feel like such an addict ;-) All the doctors seem so locked down about prescribing narcotics so not sure how to get oxy, but very interested in anything that you think will help.

    Glad to hear you are back at work - you were out 9 months right? Did your employer allow you the time off/put you on disability? I'm not receiving any pay, as I was "disabled" while already unemployed.

    I actually just traded in my car for a less expensive one to come up with some cash - it will hold me over a few more months. I'm a single parent so I had to get creative!

    I did find a job in March but lost it after a few weeks due to the painful episodes (couldn't talk, daily migraines, etc) and Dr. visits. I guess the time isn't right for me yet...but it kind of has to be. Now that it's May, I am better than I was in March, though still a far cry from "recovered".
    It's a very long journey, isn't it?!

    Have we heard from anyone who has recovered completely and is past all the relapses?

  3. I was off work for a total of 8 months plus my summer holiday of last year was ruined. I was fortunate that I've had the same employer for 15 years and had an excellent attendance record. I was able to receive full salary during this time. I ran out of sick time so I had to suck it up and go back. I start off the day fine but by about lunch I start noticing the rug burn creep up. I don't fear it anymore but it can make me a little grumpy by the evenings on some days. Strangely, the amount of talking I do doesn't make it worse. I can read or teach for extended periods without thinking about it at all. It's weird though, I always thought people were thinking I was a fraud when I was out and about so I stayed at home a lot which wasn't good for my recovery..

    My cousin made a complete recovery after about 2 months. Most who suffer pain after 3 months will have a little something left to remind them of the experience. I know one teacher who had it happen about 15 years ago and if she thinks about it she still can detect a mild tingle down the side. I bet at this point you'd take that in a heart beat eh?

  4. I think the rug burned feeling is a step in the right direction. I still get that, mildly, but I don't have pain now and haven't for ages. And it's much easier to ignore the rug burn once you get used to it I've found. Especially as I keep saying to myself "it could be worse!" and suddenly I kind of love the rug burn purely because it's not the pain!

    Found out another pregnant friend also has the metallic taste, so I think that explains mine (midwife and doc agree on that) so I'm down to just a little rug burn.

    Hang in there - I was still having ups and downs at four months and I'm way better now.

  5. i also take nortriptyline. i have been taking it for almost 2 years. i was up to 75mg but i felt it affected my breathing so i went down to 50mg. i really dont know how well it helps, but i am too fearful to come off it. i also take 100mg of topamax, again with the same conclusion.

    my nerve injury actually came from an anesthesiologist, not a dentist. i had weird facial pain they couldnt figure out so they did a nerev block on me. they stuck the needle in my face up near the TMJ and injured my nerve. of course they deny but i had pain 48 hours later and ever since. unlike you guys, my tongue is the lesser affected, my pain is up by my jaw joint and just behind my first lower molar. it also sometimes affects my upper jaw behind my last upper molar. they used a really high concentration of lidocaine and i believe it damaged my nerve.

    nortriptyline can cause heartbeat irregularity, i have an increased heart rate, slightly ,and i suspect it from this drug. but it is not overly worrisome, its still within normal range.

    anyway, hello, and i am enjoying your blog thus far.

  6. Kritty- Sorry to hear of your pain, too. Your story makes me think how we are just little guinea pig pin cushion sometimes for the Docs, aren't we? All of this has made it hard for me to trust anyone in the medical field any more, though I know there are those rare wonderful physicians here and there.