Okay, many dentists later, a cracked tooth has been ruled out, all dental problem has been ruled out and NICO is rule unlikely since I hadn't gotten any teeth removed, etc.
So it is a complication of the lyme....trigeminal neuragia.
It's atypical.
Has anyone found any relief from lyme induced atypical trigeminal neuralgia???
Posted by Tincup (Member # 5829) on :
Ouch ouch PT...
After YEARS of that I finally... KNOCK ON WOOD... got some relief.
I don't know what did it exactly... but maybe penicillin?
Sorry not able to remember back then. Was just glad it was gone.
Posted by cordor (Member # 9449) on :
quick question Painted Turtle.....what is NICO? Just curious. Also- I suffer terribly from trigeminal neuralgia, TMJ and whatever else they want to call it. Tooth pain, jaw pain, face pain, ear pain.
Posted by TF (Member # 14183) on :
I got trigeminal neuralgia while I was being treated for lyme by a doc who did not know enough to get me well.
After trying many things, the thing that worked for me was taking benedryl.
Prior to my lyme diagnosis, I also had a feeling of liquid fire pouring down my jawbone. After 2 root canals to try to cure this, I finally got sent to a dental surgeon who called it "inflammation" and put me on an anti-inflammatory (I think it was 12 Advil per day divided into 4 doses for as long as my stomach could stand it) plus I needed a pain med.
It took until the summer warmth (maybe 3 months later) for it to finally go away. Rainy days made the pain worse.
Both of these pains were unbearable. Hope this helps you.
Posted by painted turtle (Member # 7801) on :
Cordor, NICO is a cavitation, which is like a hole in the bone marrow. I was under the impression, you could develop them anywhere, but I was informed that they most often develop in locations where the tooth has been removed or gotten a root canal.
I've been dealing with this for years and the most recent endo said I likely never needed the crown, or the root canal. I got a root canal in Jan 08 and have had this thing going on to some degree since 2000.
Tin Cup, maybe I'll go with the bicillin at some point soon if I can find a person to inject.
Posted by oxygenbabe (Member # 5831) on :
I believe it is the dental work and not "atypical neuralgia." I had that diagnosis when I had a cracked wisdom tooth. It took five months to get a proepr diagnosis and get the tooth pulled. Voila--horrible pain gone. Have you had a bite test done on each tooth? Have you pulled the crowned and root canaled tooth? I would say get someone to pull it. It could have inflamed a nerve.
Posted by Oz (Member # 2905) on :
I recently experienced what I thought was a tooth problem but it was related to my sinuses which I didn't know could cause a your teeth to ache and I mean ache. I thought for sure I had a tooth gone bad. Any sinus problems of late?
Posted by painted turtle (Member # 7801) on :
I think the diagnosis is pretty clear.
We are all different. I sense it really is atypical trigeminal neralgia, either as a complication from the lyme and also possibly post herpetic.
I can't keep questioning myself or I'll never solve anything.
I've had all the bite tests and four different dentists, actually 6, over the years helping me with this.
It's not a dental problem.
It's a nerve problem.
At least that is how I need to proceed right now to keep my sanity.
I could very well go find someone to pull the tooth, but if it leaves me with the same pain.....I'll be very mad at you oxygen babe!!1 Posted by painted turtle (Member # 7801) on :
Hi Oz,
Yes I do have some sinus trouble and overall teeth ache, but this is different.
What I'm talking about here is pure pain localized to 29-30 and then sometime spreads up into maxillary when flaring.
I am thinking of getting a compatibility test to see if there is a reaction to the materials being used in my mouth.
Less is more for me at this point, it's been a looooong road!
Posted by Sparrow (Member # 11734) on :
Do you take any anti-seizure meds--like neurontin or lyrica? An anti-seizure drug should help with trigeminal neuralgia.
Posted by oxygenbabe (Member # 5831) on :
PT...is the pain near 29/30? I think I remember us discussing it on lymenet before?
Hey I was given your diagnosis by 1) a top specialist at NYU 2) an ordinary dentist 3) an ENT 4) an oral surgeon.
I remember a friend telling me her mother had neck pain so bad she couldn't move her head for a year: it was a few bad teeth. They were pulled she was fine.
I had another acquaintance who had terrible pain behind his eye for the better part of six months or a year. Went to innumerable specialists. Finally he got to an old style dentist who took xrays, said that one of his roots was twisted, removed the tooth and the pain went away from his eye.
If the herpetic lesions were right where the neuralgia is I would agree. But if you had work on that area, I suggest it's the work.
Posted by painted turtle (Member # 7801) on :
Sparrow, I've tried lamictal for anti seizure but I had too much going on at the time with too many meds being thrown at me. I may try it again or more likely something like neurontin or somethng.....unless I can find some thng holistic to take.
Oxygen babe, gosh, this is soooooooo hard, you can tell I've talked about it before trying so hard to get to the bottom of it for some relief.
I really could get the tooth pulled. But if the diagnosis is accurate, it will not help me.
The pain as I have described it from the beginning is between 29 and 30. Some days only 29 hurts, other days, only 30 and other days only between.
The pain started before any work was done. It was the cause of the work. At the time it started (around 2000), I did not know how to describe that it was between teeth.
And there are times I have pain in ear, shooting or during flares it stays there.
Since getting amalgam removed from #3, the pain has spread up the maxillary. Tooth three and two, or between them.
And then during severe flares, it travels up into the eye.
Posted by Sparrow (Member # 11734) on :
Do not get your tooth pulled. You are exactly right--it will not help if it is trigeminal neuralgia. My mother-in-law had this and I'm pretty sure the only thing that helped was anti-seizure medication. I can't ask my husband right now, but if he remembers anything else, I'll post it. So sorry you have to deal with this. I know it is painful.
I have one other thought. Tamanu oil worked great for me when I had shingles. It numbed the nerve pain. I used the New Chapter brand. It is an essential oil and you just apply it with a q-tip.
Posted by painted turtle (Member # 7801) on :
Thank you Sparrow, I'll look into this.
To be honest, I don't know if mild bells palsy has something to do with some of it, the feeling of pulling toward that right area of my jaw/face/mouth, but I have a feeling it is somehow a contributing factor to all of this at least on a small level. The right side of my mouth definitely goes down as compared to the left, though it's not obtuse.
Posted by opus2828 (Member # 15407) on :
Hello. The #1 thing that made me go to my doc and made him suggest a lyme test was persistent atypical trigeminal neuralgia like symptoms with terrible headaches - I think cranial neuropathy is the term they used.
Along with the unbelievable facial nerve pain, I had numbness and I swore I was having a stroke. For many years before it all got worse this past year, I would have tooth pain for no reason. Had three root canals! They did not cure me.
My lyme test was positive on the IgM portion, bands 23 and 41 so I retested at Igenex and got band 39 and a few others on IgM as well. I know I am "lucky" to test so positive.
Been on doxy 300mg for six weeks now and it has improved some. Seeing Dr. P in CT tomorrow to figure out what to do next!
My face also feels like the corner of my mouth goes down although not a true bell's palsy. When I look in the mirror, I'm surprised to NOT see it hanging down!
So, yes, atypical trigeminal neuralgia is definitely a symptom of lyme! I guess it can affect any nerve it wants to.
Julie
Posted by Lymetoo (Member # 743) on :
UGH, I think I may have this. The pain is just as described in articles.
I don't want anymore meds!!!
Correction: I think I have the typical TN.
[ 16. July 2008, 02:29 PM: Message edited by: Lymetoo ]
Posted by Dawnee (Member # 15089) on :
The only thing that helped my TN was regular visits to my Upper Cervical Chiropractor who adjusts the atlas. I think the actual technique is called "Atlas Orthogonal technique" and there aren't very man chiropractors who do it. Only specialists. There is a book called "What Time Tuesday?" that talks about TN and Upper Cervical technique. It's about a man who had TN so bad that he was going to kill himself. His wife made him an appointment at the specialist chiro and he is cured now.
Dawn
Posted by Lymetoo (Member # 743) on :
Then maybe another Bio Cranial treatment will help. I've had to stop treatments this summer.
Posted by B and M (Member # 13544) on :
I was diagnosed with Trigeminal Neuralga a little over a year ago.
I was given the anti-seizure medicine Trileptal. It worked to releive my pain 95% of the time. I was initially put on Lyrica and that did not work for me.
I recently tested positive for lyme. I guess I have the real answer for the cause now.
I am hoping the facial pain will go away with the lyme treatment.
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