symptoms do not match disease ATN

atypical trigeminal neuralgia
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jbbarry
Member since Nov 2008  



Nov 22, 2008 11:11AM
My wife, has had this pain over a year, it started with miild tooth ache that stopped, but when it returned, she went to our regualar dentist, Dentist said she had abscessed tooth and needed a root canal, did so the next day at Endondist. After the root canal, she still had pain specially on that tooth, including sense cold or hot temperatures, and a local pain killr (liquid) had no efferct at all.

Two days later we went on a trip by plane, and her tooth that had the root canal - she said thoutht it was gong to blow up -- so a week later, another root canal, a crown and two bite guards,

Finaly we went looked on line on Dr MD and by a web site her symptoms pointed to trigeminal neuralgia, and confirmed by her dentist and another specialist although it was only one meeting  -- still the facial pain near or at the lower jaw pain did not exactly match the on and off again intense pain from trigeminal neuralgia   --- rather hers was  somethiing that seemed to build over several hours and ceased when she went to bed, she sleeps well, usaully to awake pain free or almost pain free, but the pain usually returns again starting mid to late aftrernoon, and continues to be painful, until she goes to sleep again.only to be reapeated again the next day,

Some days she has little pain at all, she is a nurse, and runs a doctors office. She has tried lyrica, but that made her goofy -- this was done at a pain clinic and after three months they referred her to aniother doctor -  a pain specaiist.

Already she had two pain blocks, neither worked at all and now they want to do a Radio Frequency abrasion - I am concerned about her diagnosis, atypical trigeminal neuralgia -- being treated like the regular Trigeminal Neuralgia, the pain symptoms do not match -- did yours start this was and progress into the trigeminal neuralgia

They have all her dental recorrds, even an MRI plus another ct from emergency room earlier this year, and all the records from the pain clinics -- yet pain symtoms (symptoms) don't match the normal pain associated with this disease - scurrently she is diagnosed as atypical trigeminal neuralgia

since some days she is pain free, others the pain starts in the mid day or mid afternoon, and builds in pain and remains constant -- cold actually helps relieve the pain, rather than act as a trigger for the pain, she also has no tigger points that sets this off. This disappears when she sleeps, and in the mornings wake pain free.

Wife also had shingles on her stomach about six months before this all started, and about 5-8 years ago, she had all her wisdom teeth out same time, and thety botched the job. They left part of a tooth in her mouth and had to go back in after she was partially healed, she also has numbness of the lower lip, and outside her mouth on one side also as a result of this dental procedure, and some ot that numbness shew used to have seems to have changed with the onset of this disease.

So my question Is simply --- is this possibly something other than atypical trigeminal neuralgia, if so what

[SIMMY20]

oh your poor wife! after reading  your post it does sound like she has a neuropathic pain .some people are unlucky and often get it after a bout of shingles, it can take months after the shingles has gone for it to appear, and for the face pain i notice several visits to the dentist have not been good, your wife may not have typical tn, but she may have had a branch of the trigeminal nerve damaged , you could get the dentist to do an xray of the mental nerve wich could possibly have been damaged by the dental treatment that she recieved,that would explain alot of the mouth /jaw teeth pain.they damaged mine and hey presto tn!! anyway i hope your wife finds some form of relief good luck...

[sinuspaininnj]

Did you ever find out what this was?  Is she now pain free?  I have the same issues....had abscessed tooth and had it extracted, but the pain she's having is alllll too familiar.  I have the SAME exact thing...feels pretty good in the a.m., but by noon-3 p.m., I am popping Motrin again!  Pain is in cheek, inner nose, behind eye, and up to temple, all on one side.  I'd love to know if she's okay now and what she had or has!  Hope it's better now since this was posted in November.  However, I've had this pain since January 6th!  Thanks for any news....

[jbbarry]

Unfortuntely she is not pain free, but it does seems to be more managable now -- Lyrica seems to be the only thing that helps, but she has trouble with the side effects, a couple weeks ago, she lost her bite guard (it was in her robe pocket) and then she snow blowed the 6" of snow out of the driveway to go to work (since I am recovering from a fractured knee) and when she came home, she asked me who did the driveway -- she did not even remember doing any of this - so she stopped the Lyrica, and after seeing the Cleveland Clinic Pain Clinic doctor -- she realized the last pain block of the V2, (rather than the first 2 pain blocks of the V3 that did nothing at all) along with the lyria did make things better, not gone, just managable. - and Doctor suggested to wait for now, use the Lyria as needed (preferrly in a safe enviroment) and we may do another Pain block later if needed (she is limited to 3 a year by insurance and another now might make things worse) -- the pain blocks are not a cure, just something to ease the pain (sometimes) and hopefully the nerve will cease to be painful on its own.

she actually has had this since November 2007, and she is clasiffied as having  ATypical Trigeminal Neuralgia. after two root canals, two bite guards, and other dental work - usually she needs no dental exept a cleaning and check up   --- the bite guard does help and is the treatment for TMJ -- she  uses it every night, and she has one she can carry with her and use as needed such as when shopping, watching TV, something outside work, It reduces the tension on that part of the jaw and reduces the pain by using this when the pain first starts,

Her dentist says she has TMJ causing the pain -- could be, all we know is the bite guards reduces the pain when used as soon as the pain starts.

The Lyria really makes her out of it at times, our understanding is Lyrica builds within the body and if the levels get too high, some can tolerate it, some cannot -- there are other medicines in the same family, but right now it is lyrica as needed only small doses.for her  -- seems to help

As stated earlier she has had 2 pain blockes in the v3 lower nerve, no help at all on those, but then they went to the V2 nerve, looked like it would no help either so she took the Lyrica she has, and it was managable -- and then cut down the lyrica and her pain stayed managable most of the time.

This disease seems to have flareups, one days you can be pain free or minor pain, and the next is just plain bad day pain from 11am til she goes to bed ususally 8:30-9pm


Her pain is the same as you described, and changes day to day, some days she is almost pain free, others not good. -- the doctor has her waiting since all the pain blocks can do it to block the pain and hope the nerve settles down, and any further pain blocks may complicate things - or make it worse, ( it seems better than it was, and that appears all she can hope for)

Doctor at CCHP Pain Clinic, said we can only manage the pain, which seems to be tolerable at this time, too many proceedures may actually make this worse.

[sinuspaininnj]

Thank you for replying.  I am still in pain as well.  I don't know if this is TN or not for me, but our symptoms are very similar.  I feel as though my pain is stemming from over that tooth that was extracted.  It has subsided, but has NOT gone away.  I believe I will be going to the Neurologist next.
Thanks again, and I sure hope she gets better soon!  Take care.

[jbbarry]

For the last two weeks, my wife has been almost pain free, we're not sure if it was the pain block on the nerve above her area of pain, the bite guard, or the Lyrica -- it probably was a combination of all these. At least she has a lot less pain she has had for the past year or more. (as for the Lyrica she takes small doses -- I believe before Bed, (since that tends to stay in your sytem) to avoid most of the side effects.

The Pain clinic said as long as she had relief, they prefer not to do another pain block at this time, since it could reverse the process she made since the last one - and of course insurance limits her to 3 pain blocks a year, - it appears any good progress is a time to wait and see, rather than do something that may complicate things and make things worse -- So as long as this is torrerable guess that is all we can ask for.

If you are able to see a previous post, from some else on this page in that post another  person had the same thing as was diagonsed as having TN, but on one routine dental exam the dentist found a small hole in one of  her teeth in or near the root canal area, that was over looked and upon having that fixed was completely pain free for over a month last I heard.

this is a diease that may have multiple sources, for my wife it started with a tooth ache, went to root canal, then another root canal, then a bite guard for TMJ (the bite guard helps), we followed up with dentist and even went for second opinion before starting with a Pain Center -- there appears to no conclusive test for this disease, just rule out what is is not, which is all we have been able to do, moving from the easiest possibility onward and ruling out what it her pain is Not from.  

Just a note: we have copies all her x-rays, from the denists, endodontists, MRI and CT, reconrds from family doctors and earlier pain clinic, we took all these we went to the new pain clinic -- so they can recheck everything previiously done to come to a conclusion of what action to take. We were refered from a local Pain Clinic to one of the top people at the Cleveland Clinic.

[hydrengea]

Hello

I have same symptoms as your wife has. Mine started after wisdom tooth extraction. It has been a month and I already saw a neurologist and am on tegretol 200mg but it hasn't help me yet. I also have the milder pain when I wake up and by 3 or 4 pm I feel that pain gets worst and some nights I can't even walk around with shooting pains.
I was on lyrica already because of my fibromyalogia, but it didn't seem to help from very beginning.
I'm wondering if your wife is still pain free since the last post and what she has been trying to ease the pain.

thank you

[chasha33]

My mom started having twitching in her face about 12 years ago.She has had 2 face lifts and after them her face was fine for several years.About 3 months ago she started having the twitching again.And then it progresed into a severe burning stabbing pain on one side of her face.Her face would start drawing up.We went to 4 nuero Dr.s and they all had different opinons .She has had TMJ for 30 years and one Dr said that they thought it was that,But we knew that there was no way that it was not causing this extreme pain.We went to a dentist and they said that her TMJ was not the cause of this pain.So then it was back to the beginning and another Dr we took her to Emory and they tried Botox,But it didnt work as well.Then they put her on Tegretol and then the real trouble began.She had a reaction and was having trouble breathing and her face was getting worse.So instaed of them realizing that the med was causing more problems and stopping it they increased it up to 800mgs a day .In a days time she went up 500mgs then we ended up at the ER 3 times cause of her breathing.Well we realized that there was a link with the meds and asked how to stop it and try something differnt .Well with that med you cant just stop it are IT WILL CAUSE SEIZURES then So she was suppose to wean off of it for 2 weeks.We did it in a week..Then she started having anxiety .We finally got into the Mayo clinic and last week they said that it was TN and we are going to try some different meds.We are trying to avoid surgery due to the risk.Her pain usually happens within a 2 hour time period around 9pm to 11 pm.It starts out aching then procedes to burning and twisting and then goes to a severe stabbing pain.The pain peaks within 15 mins and gradually subsides within 40 mins.She walks holding one side of her head crying until the pain stops.It is really hard seeing her suffer like that and feeling so helpless.Over 30 years ago she had to have her lower teeth removed due to an infection in her gums and that is when she developed TMJ.She is only 63 years old.Nothing seems to bring these attacks on.So it is really hard to prevent them when you dont know what to avoid.She also has Fibromyalgia and takes Nuerotin.Her Dr increased her dose of that and it has seemed to help a little.She has never really had to take meds in the past and when this all came on they were trying to give her way to many meds.She refuses to take pain meds unless she is in pain and these Drs in the beginning wanted her to take them all the time.But she wont take them unless she is having an attack and by the time she takes it ,When it starts to work the pain is already starting to subside.I will keep you in my prayers.Let me know how things are going.God Bless You...Chan

[rachelle4]

I just spent the last 6 months after a root canal second in a row for this to happen. Everyone kept saying the tooth was fine. Had it pulled and there was a small fracture in it. Getting ready to pull the other one cause its hurting again. on and off. I know know that the abscess was never drained for some reason the dentist just suddenly stopped in 15 minutes and said he was done. weird, everyone said there was no abscess, i know dentists and doctors protect each other. ask for before and after pictures wish I had years ago, sometimes they cant see the fracture. In praying the pain will go away this time too. Exact symptoms pain in root canaled too, severe sinus


pain and migraine all on one side. I lad in bed for months crying. Hope it works.My pain went immediately away. But the consequences were worse bad reaction to oxycarbazine and now suffering severe muscular pain and swollen shoulders

[ed48700]

my nerve started after a face lift, did hers.

what type of surgery did mayo mention.

[ed48700]

i mixed up my message.

im supposed to go to cleveland clinic or boston eye and ear for help.

who did you see in cleveland.