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Thank you for replying... And good luck to you too

It upsets me that I have now killed probably perfectly healthy teeth and been charged for it!

It certainly is depressing

Thank you Valerie and good luck, I'm frightened of taking drugs so it worries me but I need to do something as it's taking over my life

Have you seen a neurologist yet? did they want to prescribe you the antidepressant? or anticonvulsant i also take gabbapentin/anticonvulsant but it doesnt work for the pain i take tramadol when its bad. Michael is right you need to see someone and the antidepressants and anticonvulsants are not addicting. I had trouble with both of those, but they may help you as they do for many people. Do you have the shock like waves go through your face or do you just have a constant nagging pain in your teeth? i dont have the shocks i have severe pain in and on the outside of my nose and im my gums where they took my molar out, and cheek. All on the left side and the pain in my nose is the worst. So they classify mine as atypical facial pain, and then they call it TN2 the second type of trigeminal neuralgia.

I forgot to add in goes in my jaw as well.

Thanks Marlene

So pleased you avoided dental work. I tried 2 dentists, they couldn't see anything on the X-rays but ' we will try this' anyway. I'm paying £200 a month just to pay back my treatment and been cast aside

Awaiting hospital referral but my life feels on hold

Hi Sally - I am so very sorry about the time and money you had to spend because your dentist thought it was a good idea to go ahead with dental work.  This makes me very angry because x-rays do and will tell if there are any dental issues present.  Waiting for a hospital referral can seem forever but try and be patient.  I know this is easy to say because I have been there.  I would really like to know how you are getting along with upcoming appointments.  Wishing you the very best with many good days.  I look forward to hearing from you.  

Thank you Marlene

It was almost a case of let's just try a root canal or filling on all the teeth on the side she's having pain!! Was awful, and still is as now I've root canals that haven't settled so it was all for nothing which makes me very upset

Thanks I'm hoping for a letter this week. In the meantime one of my root canals hurts when I drink or chew ( a real toothache pain) but I daren't ring my dentist to check it as I'm sure she just thinks I'm a nuisance with a mental issue about my teeth

She openly admitted she doesn't think it's my teeth anymore so why did she carry out all the procedures?

Thanks for your time and I'm pleased that you are sorted from this nightmare

Sorry Marlene I meant to ask what medication you were given?

I was told TN at the docs and given anti convulsants which I've never taken, ( too scared) and when I researched TN my symptoms didn't seem to be the same. It said a sharp shooting pain and mine is more a constant throbbing or burning which jumps from top to bottom between 3 teeth

Thanks 😊

Hi Sally - back in 2006 I was given and tried many different medications.  I remember the first pain specialist I seen was giving me morphine and I had very bad side effects from that.  I tried demerol, fentanyl, oxycontin (these are only a few) and still had bad side effects.  I was on 5 different anti-seizure medications - again bad side effects and one in particular which is call Lyrica.  I had an allergy with this medication.  I do know people who take this medication and are getting along fine.  There is one pain medication that I can take and can have some good days with absolutely no side effects.  The medication is furinol (spelling may be incorrect).  I live in Canada so am not sure if this medication is offered in the US or abroad.  As an added note, I also have sharp shooting pains that would bring tears to my eyes and also suffer greatly with throbbing and burning pain.  I have several different sensations of pain.  My pain is constant - it never goes away.  I hope this answers some of your concerns.  Please reply back if you have any more questions or concerns.  Wishing you many good days.

Hi Sally - I am truly sorry that you had to have dental work done.  This was totally unnecessary and your dentist should know this!  When my pain first started I immediately made an appointment with my dentist.  He did x-rays and checked my tooth over.  His report was that my tooth was fine.  The pain would go and come again so off to the dentist again.  He did the same with me - x-rays and checked out the tooth - all was fine.  After my appointments with him were finished I had made more appointments with an oral facial pain specialist, root canal specialist and an oral pathologist.  All confirmed that I had TN.  I would like to make a comment about your dentist.  It is just terrible that she went ahead with dental work on you - can she not read an x-ray?  A gentlemen friend of mine also has TN but his will come and then go for a period of time.  His dentist also started pulling his teeth and now those teeth which were perfectly fine are now gone.  Please feel free to contact me at any time with questions you may have,  Eleven years with this horrible disease has been a long time for me.  Wishing you the very best.

I have TN2, and it sometimes responds to opiates, for me it works.

Valerie, I guess I did paint with a broad brush when I made that comment.  I should have just said that opiates have not worked well for me.  My apologies.

Hi Michael, no apologies necessary.

Thank you.  Prayers for your relief and even better-a cure some day soon!

I will pray for you and all of us. Wouldnt that be nice a cure!!

Right now i feel depressed about the whole thing . I have isolated myself not really seeing my friends, i dont want to. I feel like i lost control of my life with this.

That's tough Michael! Extraction is my last resort as was yours I bet! How frustrating for you!

My dentist has just ' tried everything'

Which upsets me now as financially I'm at a huge loss and of course in the same pain and these procedures aren't fun are they!

Hoping to get a diagnosis at hospital but still waiting for an appt as I'm non urgent

Meanwhile every day is a struggle, did you find any painkillers take the edge off? Thanks

What are opiates please? Thank you

That is totally understandable and I went through the same thing.  It definitely changes your life, but I will say that you cannot lose hope.  Trileptal has helped me, but I also had a CyberKnife procedure last August.  It took until April for the procedure to finally work.  It was very frustrating to say the least.  Do not give up hope.  

Sally, you need to get an appt with a neurologist.   As for painkillers, I tried the usual Lortab, Vicodin, etc.  None helped.  After many trials of meds, I finally found Trileptal helped quite a bit.  It did stop working eventually, but I had a CyberKnife procedure done when the Trileptal was no longer effective.  

HI Sally i found this and copied it for you.opiates are addicting i guess narcotics. All i know is that all my life ibuprofrin/advil worked for any kind of pain i had until this nightmare of TN2,and was given tramadol , and it worked on the pain unlike the other anticonvulsants and antidepressants they give for this. I am upset that a addicting drug takes the pain away i dont want to take this but when the pain comes ,it ake it because otherwise i have no quality of life. I dont take them everyday i can go a few days pain free, then the pain comes back strong, and i give in and take the medicine and the pain goes away.. Here is what i copied for you--Opiates belong to the large biosynthetic group of benzylisoquinoline alkaloids, and are so named because they are naturally occurring alkaloids found in the opium poppy. The major psychoactive opiates are morphine, codeine, and thebaine.Papaverine, noscapine, and approximately 24 other alkaloids are also present in opium but have little to no effect on the human central nervous system, and as such are not considered to be opiates. Very small quantities of hydrocodone andhydromorphone are detected in assays of opium on rare occasions; it appears to be produced by the plant under circumstances and by processes which are not understood at this time and may include the action of bacteria.[citation needed]Dihydrocodeine, oxymorphol, oxycodone, oxymorphone, metopon and possibly other derivatives of morphine and/or hydromorphone also are found in trace amounts in opium.[citation needed]

Despite morphine being the most medically significant opiate, larger quantities of codeine are consumed medically, most of it synthesized from morphine. Codeine has greater and more predictable oral bioavailability, making it easier to titrate the dose. Codeine also has less abuse potential than morphine, and because it is milder, larger doses of codeine are required.[4]Morphine addiction cure advertisement in the year 1900Opiate withdrawal syndrome effects are associated with the abrupt cessation or reduction of prolonged opiate usage

 

HI Michael, did the cyberknife help you? i have read alot about it. I did try the trileptal.

Sorry, i asked you in another post about the cyberknife and i see here you answered my question. Thanks, yes i read it could take months for the cyberknife to work. I will try not give up hope but it is so hard.

I'm glad you asked about the CyberKnife procedure as I have not updated in a long time.  After having the CK in August, the pain kept trying to go away (if that makes any sense).   I would have major throbbing pain, but none of the electricity so my hopes were high.  However, the normal pain began coming back in March.  I set an appt with the Neuro who did my CK and was going to ask for more.  The week before I was to see him, the pain just disappeared!  Just like that!  Almost eight months after the CK.  I'm still on a low dose of trileptal (450mg per day), but the pain is gone except for a small shock here and there.

Stay strong.

Good to know it did help in the end. I am trying to stay strong it wear's on you. It does help to be able to talk to people who are going through the same things. Although i wish none of us had to be on here.

Thanks Valerie for your time

I've always been frightened of drugs so it all scares me a little!

I've never heard of cyber knife so I'll research

Can I just ask people's symptoms? Mine is a constant throb, sometimes a burning in my teeth and gums on my side. I have to bite on something just to relief it

I don't have any shooting pains or shocks which makes me believe it's not TN

I had to have a crown following RC which won't settle due to pain, all 3 RC procedures ( which I prob didn't need!) throb and feel magnetic!

I'd just love to feel ' normal' every day again

It's taking over my quality of life

Mine started 3 years ago and i had 3 extractions over time after root canals i thought had failed as was certain it was my teeth, the last time i had extraction the pain was in the same place as the missing tooth..its always starts with a bitter taste then sharp pain and then dull aching for few days it never starts until i have been up for an hour or so..xrays always clear , last year it went away for 9 months but has recently returned with a vengeance!! Has anyone else experienced this bitter taste as one of there symptoms?

hi Barbara

Oh no poor you! Sorry to read this! So I should bear with the RC teeth then if extraction doesn't work!? Have you had to have implants? How's your pain now, which medication has helped?

Thanks for your time

I've not had a bitter taste ,,, but I have read of people having that symptom

Hi sally

Thanks for replying,

Doctor gave me amitryptiline low dose 20mg which def helps and now just waiting for hospital appointment for maxillo facial dept ..pain comes and goes very spontaneous, yes i had one implant its all i can afford now !!they were back molars so doesnt show just very very stressful as im sure you know..looking back i should of waited before being so drastic but when your in pain you want relief so hang on in there!

It does help to share this with other sufferers

Thanks for reply

You sound exactly like me! I'm not going to do anything else until I've been to maxillo facial .. Poor you, as you say when in pain you'll do anything! Mind are molars too!

Can I ask does the amytriptiline make you feel very drowsy? My doctor gave me anti-epilepsy drugs which I'm refusing to take due to the side effects

Good luck with your appointment, I'm still waiting for the letter!

Hi Sally, i dont have the shocks either, its more of constant pain in an on the nose , jaw and where the molar they took out, and sometimes cheek pain.So they called it atypical facial pain aka tN2 trigeminal neuralgia 2. You may have the 2nd type. I said to the Dr.s i couldnt have TN i dont have the shocks, but i know i have it now because the pain isnt getting better and from all ive read.

And the dr's i h ave seen dont really recognize TN2, they just say its trigeminal neuralgia, and from what i have read they chould never do surgery on people with TN2 because it can make the pain way worse. You can google this. That depresses me as i dont want to live with this pain the rest of my life. I even saw a famous neurologist at UC sanfrancisco Dr Niel Raskin author of the book the headache. And he didnt recognize the TN2 ans wanted to send me to the neuoro surgeon, after trying the oxcabazapine that seemed to intensify my pain. He is very old looked to be in his eighties, and very cranky and wouldnt really let me talk. I am not going back there its an hour away, and i cant drive that far and on the bridge i have panic attacks. The panick attacks started from the TN, and the anxiety is spilling onto other areas like driving . I think i am in a constant state of anxiety now, and quality of life is not good.

Hiya the amitriptyline did make me drousy at first but not now and im sure it helps , i would be reluctant to start anti epilepsy medication too,

Hope your appointment comes soon and keep me posted and best of luck

Barbara - just read your post.  I also am on amitriptyline.  About 35 years ago I was dignosed with migrane headaches and today am still taking the medication.  Several times I asked my family physician was there a need to still take it.  Now with TN she said that I should not stop it.  On two occasions I did stop it and did notice a higher level of pain.  Also I have tried 5 different anti-seizure meds but could not take them.  I do know several people who do take anti-seizure meds and are getting along fine.  Just goes to show you that what one person can't take the med, others can.

Hi Valerie - I just read your post and my heart goes out to you.  I have TN on my right side and had the brain surgery.  Unfortunately, the surgery was unsuccessful.  You mentioned that you were told my a doctor that surgery could not be done with TN2.  This is so far from the truth.  My family physician has one other patient besides me with TN.  The other patient has TN2 and  did have a second surgery.  Do make sure you see a neurosurgeon.  Like you, I do have panic attacks especially when my pain levels are high.  I take anti-anxiety meds when I feel I can't handle the pain.  Wishing you the very best and would really love to know how you get along with the neurosurgeon.

Hi Marlene it seems amitriptyline is given to quite a lot to people with facial pain , I tried to miss a dose every other night just because I have been on them a long time but it made the pain worse so am not going to miss a dose again that's for sure...I have heard that beta blockers are prescribed as well as a low dose of the amitriptyline or similar I will mention this when I get my appointment at the maxillo facial dept, I hope your not suffering too much at the moment .

Hi Barbara - I just wanted to make another mention on amitriptyline (also known as Elavil).  This med is given to many people for different reasons.  One is for depression and another is for sleep.  My grandmother, when she was in her eighties, was also taking this med to help with her night's sleep and it worked wonderfully for her.  All the best when you have your appointment with the maxillo facial dept.  Also, I am very interested to know what report you are given.  All the best.

Thanks Marlene I will hope for a good outcome for us all one day with this horrible condition !!

Hi Marlene, that was good to know your knowing about someone with TN2.  And i will keep you posted.

I am sorry to read your surgery didnt work. I also take anti anxiety meds as well.

Hi Valerie - my surgeon told me before the surgery that I had a 50/50 chance of becoming pain free.  Because of what he told me, I had no great expectation that the suegery would be successful.

Hi Valerie - TN2 is a type of TN I never heard about.  I was told that my diagnosis was TN.  If you don't mind me asking, where do you live?  I live in Canada and I'm certain that TN diagnosis may be a bit different in term only.  To me whether you have TN2 or TN is all the same to me.  I could be incorrect with my thought.

Hi Barbara!

over the past year i had a root canal which i believe caused my TN. Eventually had the tooth pulled (back molar). I have TN2.

Im trying to decide if i should get an implant or just leave it empty. Im afraid to make it worse.

Did you have any problems getting the dental implant and would you do it again?