I'm Leiann...and apparently need to be welcomed. :(

Welcome New Member Introductions
1

Hi all! I’ve been lurking for about two months. I’m 42yo. I can’t really say that I have TN (2). I mean…the doc has said I do…but I can’t get my mind to submit to it. All I keep thinking is that it MUST be something else going on. My teeth, my ear, my tonsils, they missed something in the MRI or maybe it’s my jaw…TMJ… on and on my mind goes. Of course, if it was TN-1…I would know. I saw my mom go through that. I get “shocks” but they are ‘muted’ if that makes any sense. Dampened down…and they aren’t on the surface of my skin/face. More in my jaw and teeth.

I had extensive dental work recently. They had a hard time numbing me last time. I had excruciating tooth/jaw pain for 3 days after the work. Except…it never went away. :frowning: It’s been 10 weeks. I’ve been to dentists x2, endodontist, OMF, ENT and two neurologists. All of the formers tell me nothing is wrong with my teeth. The neurologist says it’s an “angry” nerve or nerve damage from the injections. One neuro says it is permanent and will never go away. They other says it will just take time to heal. I guess time will tell. That answer isn’t very satisfying.

I have constant pain. Ear, throat, underside of tongue, jaw, teeth, side of head, temple…sometimes under my eye and side of my nose and sometimes the upper part of my scalp (unilateral). Most of the time I am certain that it’s my teeth and I should have them pulled and it will feel better. Sometimes it’s the upper, sometimes the lower, sometimes both. Sometimes the front, most times the back. For a while I had a patch of numbness of my chin just below the lower lip.

They have asked me what it feels like. Well…it’s sharp and dull, shooting and constant, numb and painful. It itches and burns and pulls and has pressure…I mean, really I can go on. It feels like everything you can imagine at different times and sometimes all at once.

I am so thankful that it’s not as bad as most people are describing.

After the dental work I couldn’t manage the pain. It was debilitating a week after I had the procedures…I knew something was very wrong. I was going insane. I quickly went from using OTC meds for pain to scrounging up opiates from my prior ankle surgery until I could get to the dr. I mean…it was curl-up-rock-back-and-forth-writhing-around-pacing-like-a-maniac, holding my face/head/jaw while crying and yelling and cussing pain. The next neurology opening was 2 months away. I sobbed and told them I couldn’t make it that long. I really couldn’t. I started calling every neurologist in the state until someone got me in in a couple days. My PCP put me on a load of meds and charted that I was a drug seeker. :rage: He sternly warned me that I was abusing drugs because I took my own prescribed vicodin from the ankle surgery I had two years ago. Right. I was prescribed 30 of them and had 28 left. Idiot! The vicodin was enough of a relief that I could minimally function. PCP put me on tramadol, diclofenac, advil/tylenol and tegretol. I didn’t get any relief from those for 4 days. I called crying and asking what to do next and he again called me a drug seeker. :rage:

Saw a neurologist who put me on oxtellar, told me that the damage is permanent and that I will eventually be disabled and surgery would be an option at some point. Whoa pony… That seemed awfully harsh to me. Second neurologist has increased my oxtellar, but wondered why the first didn’t keep me on tegretol. I have no idea.

I have little appetite…which I’m fine with. I can’t chew on that side and cannot tolerate anything that is not slightly warmer than room temp. It LIGHTS ME UP in pain if it’s cold!

I’ve been on the oxtellar for 8 weeks and have not had complete pain relief. I am at a constant 3-4, with episodes where I get to 6 or 7. Those episodes are usually daily and can last 30m to hours. When I sleep I do not have pain. For a short time after I wake I am pain free…then it comes. :frowning: Even though oxtellar is a 24hr release, I start to have breakthrough increases in pain at about 8 hours in.

And depression. I’m so depressed! It’s the medication mostly…the pain somewhat. All I want to do is sleep and be left alone. I feel horrible about myself, haven’t been able to work out and am generally exhausted most of the time. I have nightmares that my boyfriend is leaving me.

I would like to know what other people’s experiences are with post traumatic TN from dental work? Did it heal? How long did it take? Did the pain go away completely? (of course…if that’s the case, these folks probably are not on here anymore!) What medications worked best, with the least depression? And, finally…am I crazy?!? I feel like I’m crazy. Is this all in my head? If the pain goes away, is it a gradual improvement, or just one day it is gone?

Any comments,feedback and encouragement is welcome. Many days I feel so frustrated and defeated. And guilty. Guilty because I know that the pain I have is minimal compared to others who are going through this.

2

Hi Leiann, welcome to the LWFP forum. Sounds like you are unfortunately in the right place. The one good thing about your situation–from what I have read, a very high percentage of people with nerve pain due to dental trauma heal up in 6 months of so. You are only 10 weeks out, which seems forever, but really is not that long in the course of dental nerve healing.

I can relate to a lot of what you are describing, I’ve been diagnosed with trigeminal neuropathic pain. I chew gum or wear a mouthgaurd constantly, as that “distracts” the nerves and cuts way down on pain. My experience is that painkillers don’t work, or work very minimally (including opiods), and I believe they make the situation worse in the long run. If something isn’t helping, don’t take it. Try to keep notes about what makes things worse and what may help. For instance, alcohol is now a no-go for me.

If you have a lot of problem with burning, you might want to look into a topical clonazepam rinse or swab, this has been a real godsend for me. It’s great that you can still sleep uninterrupted. I do think, as some of your neurologists have said, that you could very well heal from this before too long. So try and keep your chin up.

3

hi Leiann

My TN was first a dull pain and then three days of unbearable stabs, no sleep, it was awful and just a week after a dental procedure. I had hoped it would “go away” but it didn’t ever.

It’s been a year and I definitely have trigeminal neuralgia as well as some other nerve things we’re exploring.

The pain is very similar from what I understand, except the lightning bolts part.

One thing I can say is that nothing helped until I was put on an antidepressant (Amitryptaline worked 70%) and then an anticonvulsant (I am on Trileptal, which works 90-some percent) I am not familiar with the drug you are on, but my Dr. basically told me that if Tegretol (the first anticonvulsant I was put on) works, then Drs assume you have TN.

All I know is that oxcarbazapine/Trileptal at the right dose make my pain nonexistant. But you become “used to” the doses and the Dr has to move the dosage up.

Prior to that I was pegged as a drug seeker, I think. Too many mis-diagnoses and I truly wanted to accept them instead of the TN diagnosis. They still managed to give me Vicoden, anyway. It didn’t do ANYTHING except make me a little more cheerful.

Even though I have TN, I would say that if you’re getting depressed, please try an antideppressant that’s also used with nerve pain. If your neuro will not prescribe this, then maybe a psychiatrist will.

ALSO, Tramadol can’t be taken with an antideppressant, it’s very dangerous, just an FYI

I hope you find some relief! Don’t give up, you’re worth it!!!

4

Hi Leiann

I just googled your medication and it’s the same as mine, (oxcarbazapine) but your is extended release. I take mine twice a day.

If it’s not helping you, you can go up in dosage. Don’t be shy about pain if you can help it. I went from 900mg a day to 1800 recently. It’s upsetting but I am getting used to being a little sleepy/foggy. But in the height of pain, I know I would do anything to get relief. I don’t ever want those hardcore 100% Tn attacks again, no matter what name you call the pain.

take care!

5

Hi Leiann,

Same think happened to me on 1/27/16. I’m 47 years old. I had a tooth pulled (upper right) because I had a cracked root canal. I wasn’t in as much pain as you. It sort of felt like a mild toothache or he left a part of the tooth in there. I’ve had a lot of dental work so I knew something wasn’t right. Specialist after specialist told me extraction site looks great despite my tooth pain and occipital headache that comes and goes. Fast forward to August 2016 when I thought I was going nuts - after a particularly bad headache/migraine that never went away. Slowly, my body was adding symptoms: toothache…headache…chin stabs/tingles. My ENT was the one who said Trigeminal Neuralgia. I went to a neurosurgeon who told me I don’t have Trigeminal Neuralgia (though he never mentioned anything else it could be). Two specialists later and I have three different diagnoses: arthritis in my neck, atypical face pain (which I now know is a wastebasket term), nerve injury. I have wracked my brain trying to find an answer. Good news: Gabapentin 500mg/day and Nortriptyline 30 mg a day and Botox has provided me enough relief to function as a human. I do take .25 mg of Klonopin at night. My body does keep adding symptoms like ear aches, facial twitching, and pulling around my eye.

It just amazes me how uninformed dentists and doctors are about this condition. I honestly felt like I was going to lose it at one point. I feel your despair. Specialists tell me it takes a while for nerves to heal. I don’t know how long that is. I had a fairly good summer - my real pain was delayed. Yours seemed to have hit hard and fast.

I’m still not diagnosed yet. Sometimes I feel like I’m fighting a losing battle and other days I feel like I can tackle this monster. I’m definitely less depressed now that my pain is manageable. I was going to bed at 7 pm before just to sleep with no pain.

I’m on a fairly low dose of nortriptyline and I think this drug did wonders for me. Good luck with everything.

6

You are so lucky.When the amitryptiline was working for me it was such a relief.A holiday from the pain.If I only knew it was only a holiday I would have enjoyed it more.Still no diagnosis for me ,either-after a year.
Today is a day where I am thinking only 9 hours until bed time.I think I can deal with that.Any longer would make me cry.
Hugs.

7

Sadly, I too have a lot of days that I count down the minutes to bedtime. I find that I let myself go into a really light, twilight sleep in the evenings and I just kind of meditate but am not fully asleep and that tends to calm things down too. I just feel like I’m losing at my game of life. :frowning: Like I’m not strong enough. I had two really good days this week. Today is not very good. Headache, earache, jaw ache, all upper and lower teeth aching, burning, itching and stabbing. Still no where nearly as bad as it was that first week though. For that I am thankful.

I think I was clenching and grinding my teeth real hard last night and that set things off. I ground through my night guard a couple weeks ago and was going to get impressions to get a new one when I was at the dentist last, but I have to wait for my permanent crowns to be put in.

Yes, MelissaK, Oxtellar is the 24hr release of oxcarbazepine/trileptal.

Meldaver - so, your pain didn’t go away or “heal”?

Ugh.

8

Try Tri leptal 1200 per day. It sucks it’s just going to suck I’m sorry but life is still worth living and you might find a combo of drugs that limits the pain.

9

For 3 months I have been trying to get a doctor to order trileptal.And they were all like the other guy should order it.It is a gong show if it were not my life at stake.Finally got it -now I need to get off the effexor before I start it.I wish someone had told me that while I was trying to get the trileptal.
Vomiting and low blood pressure(you don’t want to know how low)so I need to get off slowly.

10

keep looking for a good doctor, that’s half the battle. Maybe look into other people in your area that have have given a doctor good reviews.

Doctors also want to be able to fix problems and they don’t like to fail.

There is currently a climate of fear for doctors to prescribe strong opioids. They are afraid that if you aren’t careful they could lose thier license and go to jail.

11

Hi
I am in Canada where you are LUCKY to have a family doctor.
And specialists?
You cannot shop around.
A referral has to be given by the family doctor.You can suggest to the doctor who you would like to see but still need to convince the doctor you need a specialist.And not many want to specialize in this.Could you imagine the kid telling their parents that they want them to spend half a million dollars at med school for this?I am giving it the year-and then having the trip of a lifetime.The bears and wolves can do an autopsy and say" hmm-still doesn’t taste too bad.All those meds must have preserved her".And then wonder why they are staggering around the bushes at night.
Never thinking it’s the meds.

12

Ellen, you are too funny! :grinning: At least you somehow keep your sense of humor!

13

Hi Leiann,
It sounds like we have had similar beginnings to this terrible condition. I have been diagnosed with many terms describing basically the same thing, but through my own research I think “trigeminal neuropathy” explains what I’m experiencing the best.
I started having pain a few days after I got 3 fillings for a cavities. I remember it being very difficult for the dentist to numb me up and I remember feeling everything during the procedure. It wasn’t too terrible though and otherwise not very noteworthy.
The pain slowly spread from the one tooth to the whole side of my jaw, to my ear, and up my face all the way to the eye/temple area. And it hasn’t gone away since (2 years ago). I’ve heard everything from doctors from “the nerve just needs to settle down” to "you must have MS (eye roll)"
I don’t know if this will ever completely resolve for you or I, but I can tell you that it has gotten MUCH better for me, and I’m only on a very low dose of nortriptyline - no other meds as of right now. And who knows what it was that helped me get better. Maybe it had nothing to do with my efforts at all. But, for sure, it was pure hell in the beginning.
I have a theory that some people are predisposed to the trigeminal nerve become irritated and all it takes is something like a simple dental procedure to wake the sleeping giant.
I pray that you will find relief soon and that all of this is just temporary for you.

14

No my pain didn’t go away or heal. I find that I have really good days and then really bad days. When I have bad days, I find that a really good cry in the shower, feeling sorry for myself helps. Sometimes I just need to get it out. Then I’m ready to tackle the rest of the day.

My pain sort of evolved over time. It first started with a toothache then went downhill from there.

15

Hi Liz,

My story is identical to yours. I’m in the “spreading phase”. Just curious, how much nortriptyline are you taking? How long were you on the nortriptyline until you noticed improvement?

Melanie

16

I’m currently on 20 mg, but I was taken through the medication merry-go-round for a while. I was on 1800 mg gabapentin and 50 mg nortriptyline, but have since improved, hence now just being on 20 mg nortriptyline and no gabapentin. It took maybe a week or two for me to feel better from the nortriptyline.