Just Diagnosed. Now what?

This journey started a mere two months ago with a broken tooth. They filled the hole then followed it up with another appointment for another tooth with a cavity.

I went in in August and had the second filling. The dentist said it was close to the nerve and we'd know in a few days if I'd need a root canal. I also have Meniere's and the filling set off my vertigo and BPPV for two weeks. Fun times.

After 5 days the pain started and was unbearable. Back to the dentist and he said TN or TNP because the tooth was still healthy. He prescribed Elavil which made me loopy so I couldn't take it.

I had a colonoscopy the next day and the pain began to subside. I went back to the dentist for a recheck and he was pleased it was easing off.

The following week I went to conference, and while at conference I got stressed and the pain came back 10 fold. Its a non-stop aching pain in my teeth, cheekbone, lower jaw and ear on the left side with shooting pains into my teeth.

So the dentist sent me to the endodontist. He declared the tooth healthy and said maybe sinus or maybe TN. He referred me to the ENT.

The ENT said "It shouldn't be TN might be jaw strain" he sent me home with 800,g advil every 6 hours and a weeks of prednisone and the thought that maybe its my sinuses because I fractured them in a wreck years ago, but maybe not.

I went to my family doc for my blood pressure med refill and discussed the jaw pain with him. He said it sounded like "tic douloureux" as they used to call it or TN. He said he had several patients with it and sent me home with 100mg of neurontin to start with and keep up the advil as needed. I cant go long with out the advil except when I sleep. He also suggested acupuncture. He said we might have a chance of getting it calmed down enough to only have to medicate sometimes. But the pitty in his eyes tells me something else entirely.

So Im a month or so from the start of this mess and Im in pain every day. This is ridiculous. My sister the nurse practitioner said from the get go this is really REALLY bad and I'm going to end up on a ton of medicine.

I refuse to take narcotics. Im 37, I have got a life to live and my husband and I want to have kids.

Im very concerned this is going to push me out of work and onto disability. I need to work. Please help.

i am so sorry that you have received this diagnosis. educating yourself is key in dealing with tn. the book Striking Back has a pretty good med list. there are many options and perhaps you can achieve a pain free time. kc dancer has also posted a med list here in the community. other options are lidocaine creams and mouth washes can help too.

don’t be disheartened, we will all help you navigate this. i wish you many pain free days ahead.

Have you been to a neurologist yet? That is usually the best bet although your family doc seems pretty savvy. Many of us have so much unnecessary dental work done attempting to alleviate the pain. I had 6 root canals and a tooth extraction trying to eliminate my pain. It never helped. I lived with the daily pain that had me in tears begging the dentist to root canal my tooth, etc. for over a year before my primary dr. guessed tn and prescribed me 100 mg neurontin. It helped quickly and small doses worked for the first couple of years.

When you get into capable hands, there is a good deal that can be done. As Patty mentioned, "Striking Back!" by Dr. Ken Casey is the tn bible and is a great resource for us. As you learned, stress is not our friend so try to read as much as possible and ask questions, there IS hope. Yes, our lives changed and none of us would have chosen this path but we learn to manage.

Im tempted to have the tooth in question pulled anyway because it hurts to chew, even though the dental experts promise me its not the tooth. Its the very last tooth on the upper left side, so it won't be missed.

I havent been to a neurologist yet, but even with insurance I cant afford the MRI they are going to want to do. We are just now starting to pay for the coloniscopy (1100 AFTER insurance sheesh!)

I had an MRI when they diagnosed me with Meniere's 4 years ago. I had similar pain, albeit not as constant or as wide spread then.

How long does the neurotin take to kick in? The doc said a couple weeks to a month then they up the does if I have no change.

I have Meniere's disease too. How often do you get an episode of that? I have one maybe once or twice a year.

The neurontin gave me some relief within the first week. I started with 100 mg/day and went up to 100mg/2x day which helped for a couple of years. That is unusual. I am now up to 2100 mg day.

As far as the cost of the MRI, I just had a second brain MRI/MRA and my portion was $67 (I paid 10 or 20%, not sure). Be careful removing teeth. I thought the same thing, in the back, they won't be missed. It causes your other teeth to shift. I had 2 upper back teeth removed and needed a root canal on the 2 teeth next to it. Guess what? I just had the crown fall out because the missing teeth put more stress on the crowned tooth.



Roguehistoian said:

Im tempted to have the tooth in question pulled anyway because it hurts to chew, even though the dental experts promise me its not the tooth. Its the very last tooth on the upper left side, so it won't be missed.

I havent been to a neurologist yet, but even with insurance I cant afford the MRI they are going to want to do. We are just now starting to pay for the coloniscopy (1100 AFTER insurance sheesh!)

I had an MRI when they diagnosed me with Meniere's 4 years ago. I had similar pain, albeit not as constant or as wide spread then.

How long does the neurotin take to kick in? The doc said a couple weeks to a month then they up the does if I have no change.

DO NOT REMOVE THE TOOTH ! So many of us have started our journey off in the dental chair begging the dentist to root canal or remove teeth only to be left in the same or in more pain. I have the same type of pain in the same locations as you. A year and a half in and there are still days that I am convinced there MUST be something wrong with that tooth. There isn't though and maybe the next day and different tooth will hurt. When this started for me it was in one tooth, every single day for about nine months. The pain slowly started to spread to other teeth on that side top and bottom, then up into my cheek, jaw and ear.

All of the meds used for this take time to start working need to be increased slowly. How long did you try Elavil for? The side effects on that one can be a lot to deal with but with most of these meds if you can handle the first few weeks then your body slowly starts to get used to the med and the side effects should decrease somewhat. I was on Amitriptyline (Elavil) for a year. It helped me a lot. A month ago I was switched to Nortriptyline (Aventyl) a month ago. The side effects are less and it is working fairly well.

You should see a neurologist. An MRI is important. I realize that health care costs in the US are not ideal. And there is a wealth of information on here. Feel free to ask anything. We all understand what you are going through.

Jane

A couple times a year. Usually not too bad. After the last dential visit it was really bad and I had several.

Jasmine said:

I have Meniere's disease too. How often do you get an episode of that? I have one maybe once or twice a year.

The elavil was a nightmare. I took 10mg for a day and literally could not put two thoughts together to make a sentence. I tried 5mg for two days and it was the same thing. My family doc said because of my ultra sensitivity to other anti depressants it might be best not to take it again. It literally took me 3 hours at work to do something that normally took 45 minutes. I couldn't think.

I keep wanting to have the tooth in question removed because it hurts to chew most of the time. The x rays and dental tests said the tooth was alive and well, but then why does it hurt to chew or hurt so bad after I eat? I don't understand....

I had an MRI 4 years ago for the Meniere's. My cost AFTER the 80/20 was over 600 dollars. We simply don't have the money for that, we are already paying on the colonoscopy (1100 bucks)... The bad thing is we have "good coverage"...

Im so scared Im going to be disabled by this.

Sorry that you had such a bad experience with Elavil. Lots of people cannot handle it and your experience does not sound good. Medication makes things more complicated with TN. We are all so different with what works for our pain and what side effects we can handle. There are lots of choices for medication. So don't give up. And the Neurontin does work for lots of people so stick with it.

As for your tooth--yes chewing can be a trigger for people. I had my hurting tooth root canalled and it still hurts. My dentist said that it was successful and it was dead so there is NO way that it should hurt. But it does...every day. He filed it down a bit so that my other teeth wouldn't touch it when I bit down. That did help a little.

TN is a great faker though and please do not remove the tooth. If a dentist and a specialist can see nothing wrong then it is NOT the tooth. It is the nerve. This is so so common for us--we would do anything to get rid of the pain.

I know that you are freaked out and afraid. Rightly so. Stress and anxiety can really add to flair ups with TN. I know it sounds like the impossible...but you need to try to remain calm.

Having a TN diagnosis is NOT a death sentence. Everyone's experience with it is different but there are lots of success stories. I am 38 years old. I was first diagnosed when I was 29. I had a remission and it came back when I was 37. I went the dental route and was in terrible pain and so upset and stressed out for about six months. Once I was able to find a medication that worked things really leveled out. A year and a half later I am living a good, full life. I have a young daughter, I am a single mom, own my own home and work three jobs so I would safely say that I am able to function! My medication is working...I am not pain free and I do still have days that are difficult pain wise. I have learnt some coping mechanisms and try to keep things in perspective. Stress, weather, my cycle and lack of sleep are all triggers for me. It takes time to learn what makes your pain worse or better. I only take the one medication. No narcotics or pain pills.

It is a difficult journey. I will not lie. It is isolating and frightening at times. You need to learn as much as you possibly can about it. Talk with others on here or on Facebook (there are several good groups on there). I find that it REALLY helps to know that I am not alone and hear other people describe my pain and feelings perfectly. Any new symptom, experience or question I start a post on it. Knowledge is power. And you need to seek out the best medical help that you can...that takes time and perseverance.

Hang in there and keep asking questions!

Roguehistoian said:

The elavil was a nightmare. I took 10mg for a day and literally could not put two thoughts together to make a sentence. I tried 5mg for two days and it was the same thing. My family doc said because of my ultra sensitivity to other anti depressants it might be best not to take it again. It literally took me 3 hours at work to do something that normally took 45 minutes. I couldn't think.

I keep wanting to have the tooth in question removed because it hurts to chew most of the time. The x rays and dental tests said the tooth was alive and well, but then why does it hurt to chew or hurt so bad after I eat? I don't understand....

I had an MRI 4 years ago for the Meniere's. My cost AFTER the 80/20 was over 600 dollars. We simply don't have the money for that, we are already paying on the colonoscopy (1100 bucks)... The bad thing is we have "good coverage"...

Im so scared Im going to be disabled by this.

What justjane37 said! Don’t give up! You have only just started treatment, there are still options. Also, it is common to develop tolerance to the medication, so most people have to be increased in dosage (but wait for the doctor to prescribe it).

Make sure to see a neurologist as soon as possible. Ask for a referral from your GP. Don’t be scared of pain meds, but be careful with the opioids of course. With this condition, you cannot really afford to be principled if you want relief.

You may want to try some relaxation techniques and maybe get some massages to make sure the rest of you is not holding on to tension. In my experience, a tense back and neck does not help!

I am 35 and work fulltime with a side job. I exercise, socialise, sing in a choir and travel lots. I am far away from disability yet, and I am on my 15th year of this. There is plenty of hope! You can do it!

The "no opioids" isn't as much principle as it is necessity. My mother and my older sister got hooked easily on them. They killed my older sister after a time, and mom who died of cancer, was plenty hooked on them at one point in her downward decline before the cancer. Dad and the doctor got her weened off, but it was bad for a while. I can not afford to be hooked on anything like that. I saw it destroy my sister, I simply can not open that door.



Tineline said:

What justjane37 said! Don't give up! You have only just started treatment, there are still options. Also, it is common to develop tolerance to the medication, so most people have to be increased in dosage (but wait for the doctor to prescribe it).

Make sure to see a neurologist as soon as possible. Ask for a referral from your GP. Don't be scared of pain meds, but be careful with the opioids of course. With this condition, you cannot really afford to be principled if you want relief.

You may want to try some relaxation techniques and maybe get some massages to make sure the rest of you is not holding on to tension. In my experience, a tense back and neck does not help!

I am 35 and work fulltime with a side job. I exercise, socialise, sing in a choir and travel lots. I am far away from disability yet, and I am on my 15th year of this. There is plenty of hope! You can do it!

I am very sorry about your family and understand your concern. Of course you know yourself better than anyone, and it is entirely up to you to choose way forward. I use a codeine tablet for the worst ATN, but it makes me terribly hungover the entire next day, so I only take one every two months or so.

Most regular TN has good chances of control with the anti-epileptics, and some other drugs. If you find relief in those, like I think most of us do, there will be little need for painkillers in the long run. But give it time to kick in. It took me a couple of months to dose up to pain free dosage - 600 mg carbamazepine (Tegretol).

Try to not think of this as an illness or handicap and you will get a long way. You are you, with pain that will most likely eventually subside. We have to deal with it, but there really are a number of options. But you should get that neuro appointment and the MRI - it is worth the cost to exclude brain tumors or MS as cause (even if you are personally sure they are not), and if you have a vascular compression then you might be a candidate for surgery. If you don’t want an MRI, you don’t have to take one. But a neuro can work on medication and med combos with you in a way that most GPs cannot. Stay positive!

Hi jane.I have those issues with teeth ,my back top tooth it is,i think its got an infection and can hurt with pressure,i cant completly rule it out as i have a deep pocket that allows bacteria to build up,so i get it cleaned every so often,but dentist said no infection,no decay (3 months or so ago). Was wondering if anyone had good ideas how to keep a deep pocket clean .I did buy a syringe thing but it doesnt seem to work.I have been having murders for a few weeks with my face,bloody inconvience this pain is. I now have my mouthguard and weirdly enough my jaw aches less when i get up. Anyway to the lady regarding teeth pulling,if there is no infection then there is no reason to pull it.All my pain is in my teeth,my face pain is bad at mo,but i can make it subside 'sometimes'. I am new to this,well 10 months new,so i get alot of help and advice off of this site.Its my saving grace really,as we all understand each other.

justjane37 said:

DO NOT REMOVE THE TOOTH ! So many of us have started our journey off in the dental chair begging the dentist to root canal or remove teeth only to be left in the same or in more pain. I have the same type of pain in the same locations as you. A year and a half in and there are still days that I am convinced there MUST be something wrong with that tooth. There isn't though and maybe the next day and different tooth will hurt. When this started for me it was in one tooth, every single day for about nine months. The pain slowly started to spread to other teeth on that side top and bottom, then up into my cheek, jaw and ear.

All of the meds used for this take time to start working need to be increased slowly. How long did you try Elavil for? The side effects on that one can be a lot to deal with but with most of these meds if you can handle the first few weeks then your body slowly starts to get used to the med and the side effects should decrease somewhat. I was on Amitriptyline (Elavil) for a year. It helped me a lot. A month ago I was switched to Nortriptyline (Aventyl) a month ago. The side effects are less and it is working fairly well.

You should see a neurologist. An MRI is important. I realize that health care costs in the US are not ideal. And there is a wealth of information on here. Feel free to ask anything. We all understand what you are going through.

Jane

Oh is there a facebook page. do you have alink jane. Do you use your normal facebook ID or have you created one just for the TN

justjane37 said:

Sorry that you had such a bad experience with Elavil. Lots of people cannot handle it and your experience does not sound good. Medication makes things more complicated with TN. We are all so different with what works for our pain and what side effects we can handle. There are lots of choices for medication. So don't give up. And the Neurontin does work for lots of people so stick with it.

As for your tooth--yes chewing can be a trigger for people. I had my hurting tooth root canalled and it still hurts. My dentist said that it was successful and it was dead so there is NO way that it should hurt. But it does...every day. He filed it down a bit so that my other teeth wouldn't touch it when I bit down. That did help a little.

TN is a great faker though and please do not remove the tooth. If a dentist and a specialist can see nothing wrong then it is NOT the tooth. It is the nerve. This is so so common for us--we would do anything to get rid of the pain.

I know that you are freaked out and afraid. Rightly so. Stress and anxiety can really add to flair ups with TN. I know it sounds like the impossible...but you need to try to remain calm.

Having a TN diagnosis is NOT a death sentence. Everyone's experience with it is different but there are lots of success stories. I am 38 years old. I was first diagnosed when I was 29. I had a remission and it came back when I was 37. I went the dental route and was in terrible pain and so upset and stressed out for about six months. Once I was able to find a medication that worked things really leveled out. A year and a half later I am living a good, full life. I have a young daughter, I am a single mom, own my own home and work three jobs so I would safely say that I am able to function! My medication is working...I am not pain free and I do still have days that are difficult pain wise. I have learnt some coping mechanisms and try to keep things in perspective. Stress, weather, my cycle and lack of sleep are all triggers for me. It takes time to learn what makes your pain worse or better. I only take the one medication. No narcotics or pain pills.

It is a difficult journey. I will not lie. It is isolating and frightening at times. You need to learn as much as you possibly can about it. Talk with others on here or on Facebook (there are several good groups on there). I find that it REALLY helps to know that I am not alone and hear other people describe my pain and feelings perfectly. Any new symptom, experience or question I start a post on it. Knowledge is power. And you need to seek out the best medical help that you can...that takes time and perseverance.

Hang in there and keep asking questions!

Roguehistoian said:

The elavil was a nightmare. I took 10mg for a day and literally could not put two thoughts together to make a sentence. I tried 5mg for two days and it was the same thing. My family doc said because of my ultra sensitivity to other anti depressants it might be best not to take it again. It literally took me 3 hours at work to do something that normally took 45 minutes. I couldn't think.

I keep wanting to have the tooth in question removed because it hurts to chew most of the time. The x rays and dental tests said the tooth was alive and well, but then why does it hurt to chew or hurt so bad after I eat? I don't understand....

I had an MRI 4 years ago for the Meniere's. My cost AFTER the 80/20 was over 600 dollars. We simply don't have the money for that, we are already paying on the colonoscopy (1100 bucks)... The bad thing is we have "good coverage"...

Im so scared Im going to be disabled by this.

Hi Barbara, how do you get your pain to subside sometimes? Thanks.

This is a good group on Face Book

https://www.facebook.com/groups/23078713659/

Mine started with a broken tooth too...which led to more and more dental work ...accepting this disease is the hardest part...it takes quite awhile to sink in that this is really happening to you..its like a bad nightmare u can't wake up from. When reading everything at first I was so confused but at the end it was clearer I have TN2 24/7pain so I take a tricylic anti depressant for my pain I tried the anti sez without success..In the beg I didn't wana be on meds either so I tried months of chiropractic which failed me..My dad had to yell at me to start the meds because all I did was lay there and sleep cuz I wished for death every night and was beyond depressed.and im glad he did push me my life with never be the same but I can run again and have somewhat normal life without pain because of the nortriptyline 75mg a day Feel free to friend me and ask any questions

hi jasmine.Ponders,i have never had a pain free day 'yet' except when i sleep. I have good days which are around a 2 or 3,bad days are 10 as we all know. I take 50/75mg nortriptyline,which when i started them,really saved my life. I now take 50 mg some days as i dont like the dry mouth or weight gain and not going to wee.I also have something herbal called nerve fix,and a herbal tablet called curamin which the curamin i got off amazon.I have not been on them long,but have had quite a good day today,probably the best in a very long time.For my face pain,i rub voltarol gel onto the right side,it can help. I have dragon balm too which has that capsaicin in it (spelling),basically its cayenne pepper,and it can work.Some days you are at a loss and nothing works,and those are the days where you wanna put your head in a vice.I am currently having aloe vera juice at mo,just to see if this does anything.None of the anti seizure pills are any good for me,i am not tolerant of any of them at all,they make me go weird,so i dont want that. I am to try ox carbemazine (or something like that) ,but havent got around to going to doc to get it. What works for me tho may not work for you,but we all try what people advise,i know i do. hopefully you find a happy medium. What do you take

Jasmine said:

Hi Barbara, how do you get your pain to subside sometimes? Thanks.

Hi Barbara, thanks for responding. I am not on any meds because my neurologist is waiting to see if I get to the point where the pain is constant and more painful, I think. The pain changes often but never lasts long, so far. I get it in my face, teeth, back of head, nose and now the ears. That can't be good! But like I said, it doesn't last long and it's not constant.

I keep hoping it's not TN, but I know better.

I hope your day continues to be a good one!