Does this sound familiar to anyone?

Hi everyone,

I'm new here. I apologize now because this is long but I'm happy to find people who seem to understand what I'm going through. I've been suffering for almost 2 months now after a root canal. I am not officially diagnosed yet with TN but the term has been brought up a few times and we're working to eliminate my sinuses. CT scan booked tomorrow, then there will be another one with contrast booked and a referral to a neurologist. I'm miserable. I'm in pain all the time though thankfully my doctor is working with me. I'm currently on 60 mg of sustained release morphine as of the day before yesterday. This helps but I still get breakthrough pains that are horrendous. I feel like someone is taking an ice pick and volleying it upwards through my head. I went to the ER yesterday morning because I couldn't take it. That doctor gave me a few Percocet which helps. They last about 4 1/2-5 hours but then the pain comes back, even with Morphine.

Without pain killers, I have a constant burning in my left side of my face, right above my back molars. It's an achey, boring into my head, burning sensation that will sometimes jolt into these sharp pains that go upwards towards my eye. It can occasionally radiate backwards. I also have constant pain in the back of my head, at the base of my skull on both sides but more so on the left. It grips my head all the time and I get these piercing, screaming shots of pain that go from the base of my head to the top of my skull. It's so sharp and debilitating. I get radiating repetitions of these shots, one after another, after another, after another that do not abate, no matter what I do. Position change doesn't help, ice doesn't help, darkness, silence, nothing. I'm at the point now where, even with painkillers, this is ongoing 24 hours a day. I'm going crazy.

This is my actual story as I wrote it for my profile:

Late July, I had a root canal done. I was not sedated so I was aware. At one point, I felt burning even over top of the freezing. I had to stop the procedure. It was a deep, hot, burning pain that was on my left upper jaw. He did some more freezing and it faded but I could still feel something. We were just near the end of the procedure so we just finished it off. He commented that it was a tricky root canal for him, not the worst but definitely in the top 10 or so.

I returned to him about a week and a half later for ongoing pain. It always felt as though it was between my two back molars. It was a burning, aching pain. The first visit was inconclusive. They weren't able to isolate where the pain was originating. The bite test showed my root canal tooth. The tapping test showed my back molar. They shaved down the root canal tooth just in case I was hitting it first when chewing and gave more pain relievers. This didn't fix it.

I came back about a week later, again with complaints of pains, shooting up into my face, headaches. It was constant and I could aggravate it by pushing on the first root canal tooth but it was a weird buildup, not an immediate surge. The pain that resulted from that was intense and would bring me to tears. The dentist ended up doing a cold test on my back tooth which jolted me out of my chair with pain. This resulted in another root canal being done on that back tooth.

The pain still continued. I came back about a week after that root canal, practically in tears due to the pain. I was having headaches almost every day and aching, burning pains in my jaw that would shoot up into my face. I got put on Percocet which helped although what it did was help with the shots of pain but not the burning.

I called in again a week later. My dentist basically gave up and referred me to a root canal specialist because he thinks maybe he missed a root. The specialist appointment isn't for another month. A couple days later he calls and asks me to come in for a 3D scan just so he can take a look. He didn't want to totally give up and thought this might give some answers.

I ended up calling again 2 days after the 3D scan, in tears. I'd run out of pain killers a few days before. I was just taking OTC. I couldn't focus on work, I was starting to lose sleep, I was stressed. The level of pain was getting to be too much. My dentist set up an appointment to look at the 3D scan and he found that I had a blocked sinus on same side. We thought we'd found an answer. I was given a round of antibiotics, a decongestant and more pain killers.

In the first 3 days, I felt a LOT better. The Percocets were fairly strong and there was definitely some blockage. I used the neti pot 2 times a day and cleared something right out. Then I plateaued. I was still having the burning pain in my face and the shots of searing pain. Even with the neti pot and the decongestant and OTC pain killers.

I called my dentist again and he said he can't help me anymore, I need to go to my family doctor. It's a sinus issue. Wants me to cancel the specialist appointment. I keep trying to say that I don't think it's sinuses. I even go in and go through all my symptoms. No go, doesn't want to see me.

I go to my family doctor. I run through the history. I was actually there in between all this to see my family doctor because I am dealing with peripheral blindness but this is taking over my life. I'd actually had a CT scan of my head after the 3D scan which showed my sinuses to be within normal ranges. I'm at the point where my pain is 24 hours a day. I've had a headache for 2 weeks straight that is shooting through my brain. It feels like an ice pick anytime I move, whether I'm laying down or sitting or standing. I have a history of migraines so he treats it with Maaxalt and T4s. The T4s provide relief until they wear off.

I go back. We start to discuss Trigeminal Neuralgia and I'm put on Tramadol. The Tramadol doesn't work. Now I'm on Morphine.

It certainly sounds like TN, more like ATN. My story is similar but not with the same amount of pain you are experiencing. After a root canal, the pain wouldn't stop, antibiotics and still pain. When the neurologist put me on Trileptal the pain vanished. You will find that opioids don't work or don't work very well. The pain isn't the kind that these drugs can treat - entirely different mechanism. When people are in crises, plainly you are, morphine is the only thing that helps.

Tramadol helps me with the breakthrough pain, not crises pain.

If you've read stuff here then you know the good news and bad news. With the amount of pain you are experiencing, they are going to want to put you on a antiseizure med, which should help tremendously. The bad news is that these meds are zombie meds. But right now you need to deal with the pain and get that under control. Get your doctor to get you a referral to a neurologist and tell him to tell the neurologist it is an emergency. You need to see them NOW as you are in such pain. Fight for yourself. If your family doc can write scripts to put you on Tegretol or Trileptal, do it. NOW. At least you may get some relief before you see the neurologist. Call him tomorrow and say I want to try Trileptal NOW. If this stops the pain you'll know without a doubt that it's TN. If at a high dose it doesn't help the pain it doesn't mean it's not TN only this drug is not helping. Also you need a script for lidocaine patches and/or cream. They do help. I have the 5% gel and can put it my mouth and on my face. The patches you stick to your face. It helps numb the nerves. Mostly for breakthrough pain but right now you need to build up your arsenal. Keep on the morphine for now. The pain is too much to go off of it right now.

Remember this is the WORST pain a person can experience.

So -

1.Trileptal or Tegretol (Trileptal has less side effects) from your family doc to get started and hopefully relieve the pain, there are others like Lyrica or baclofan, or antidepressants such as Nortriptyline. These all work on nerve pain.

2. lidocaine patches or cream

3. Neurologist referrel

Other drugs that work as a kicker but not all that well alone: tramadol, klonopin, cymbalta and others.

You need relief now.

I am on nortrityline, klonopin, tramadol and lidocaine gel. I was on trileptal and it worked great but the side effects were too much.

TN can trigger migraines.

Tegretol/Carbampezine should help you.It is anti seizure and you do get a bit zoned out at first and pretty laid back.But you get used to it and it gets better.Pain pills are nice for the severe pain,but just mask it.There are solutions ,so hang in there.Lots to learn here.Just relax and think positively even when it's hard.Stress hurts us.Don

Absolutely what Don said...ask for Carbamazepine/ Tegretol. I got relief from it within hours...it's a great place to start.

Please, ask your doc about it...it can't hurt, and it could help with diagnosing actual TN (as if the drug helps, it points to TN)

*hug* I wish i had a magic trick to just make your pain go away...(and the rest of us too for that matter.)

Peace and relief to you

~Mistee

Sounds like what happened to me, pain started after root canal, kept going back, in the end had 5 teeth pulled, I was so desperate for the pain to stop, it never did and guess my dentitst had not heard of TN and I sure had not. I basically lost a few years of my life before I was finally diagnosed. Now on Gabapentin and it works pretty well, couldn't be without it! I still have some breakthrough pain, but compared to before, I can live life again. I have been on it 7 years and have had to increase dose, but just depends on how TN is, how much I take. Definitely go see a neurologist or facial pain specialist and as said above, keep on until you get in quick! You deserve relief, this pain is debilatating and there is hope and help. You just need to find a Dr tht understands and knows about TN. You have suffered way too much and time to get answers and help. It doesn't help for long, but during bad attacks I swab on some Ora Gel, seems to calm the nerves for just a bit. Lidocaine better but until you get that. We have to be our own advocates with TN. Sorry you are going through all of this, but glad you found the site, very supportive nice group, none of us want to have to be here, but since we are it is good to have that support. Please keep us updated. Sending a gentle hug,

Betsy

Wow, thank you everyone for your replies. Just reading them makes me feel a little better. I've booked an appointment today with my doctor because I need some help with my pain. I feel bad that I'm on morphine and it's barely working but if it's nerve based, that makes sense. I also have the CT scan today for the sinuses so hopefully we can move forward to getting an actual diagnosis.

See if you can get Lidoderm patches for face from doc… Works better than moraphine for many…goes to the nerve, and lidocaine in the patch can make it so you have less drugs doseage.

My doctor doesn’t want to put me on Tegretol. We are waiting for the CT scan results for my sinuses which should be back by Friday. The most he will do is give me Percocet for break through pains which really barely work. So I’m stuck waiting until Friday which will only result in another CT scan with contrast request and more pain killers. Only after those results are in will I get the referral to the neurologist. Miserable.

One odd thing I’ve noticed is that in the past 3 days, I’m getting nerve pain in my lower back and upper thighs. Same like after my car accident in '03. I’ve also woken up this morning with a grossly swollen gum around the root canal area and pain like you wouldn’t believe. I can barely swallow. I guess the dentist is actually going to have to see me now.

So sorry you are still in misery!! I am also sorry your doc won't work with you to get this under control!! I live a few hours from Baltimore and Johns Hopkins has a big clinic there. I called and asked their advice when I was diagnosed and they said you don't even need to see a neurologist right away--many people have good relief with tegretol and other meds your primary care doc can prescribe. They also said they accept referrals from primary care doc --so if I need to see them he can just send me there. My doc ordered the mri as well--so I feel like sometimes we are misinformed by our docs. BTW-- If tegretol works it is a sure sign you have tn-- so docs use it to diagnose the illness. Hope this helps!!!

Does an MRI help diagnose TN? We have a year’s wait list here but I suppose if it’s worth while, I could get put on the wait list and when I do get in to see the neurologist, perhaps he/she could get it pushed up.

They can "sometimes" see a compression point on the nerve.A MRI and very good Radiologist found my AVM (bulged vein) that was pressing the nerve.Good luck!

Look at www.tibetancranial.org

I have been dealing with TN for almost two years. I go to Mayo Clinic in Scottsdale, AZ. They did what is called a slice MRI, as they say that is the only way they can see if a blood vessel is touching a nerve. My MRI shows a blood vessel touching a nerve, and Mayo says I am a candidate for a Microvascular Decompression operation. I have talked to two neuro-surgeons and they both say an operation is the only thing that will cure my TN. However, I am very reluctant to do the surgery, as I am somewhat controlling it on a daily basis. Tegretol seems to work but it does turn you into a zombie. My doctor now has me on Gabapentin 300 MG capsules. Doesn't seem to work as well as Tegretol, but the side effects are not as bad. I keep hoping for a breakthrough and I am anxious to learn what the conference in San Diego this month shares.

https://www.facebook.com/#!/facialpainassociation

I am also really curious if anyone has tried medical marijuana. There is something called Simpson Oil that has great reviews, but not anything I have seen as yet on how it works with TN. I am a retired airline pilot and never have tried marijuana, but now with TN I would be willing to try. Supposedly Simpson Oil does not cause a high, only stops pain.

Golf nut… MVD isn’t a cure… I had one…no pain now on year 2…someday mostly will come back…I used greatest surgeon on the planet, literally
and thru away my meds.

Before anything else, ask dr. To call you in topical meds…

Lidocaine cream and patches for face!

Works WONDERFUL for many! For hours! Can lower your dose of meds sometimes.

And yes medical or not medical pot can help many… But lidocaine is legal. Lol

I saw my dentist today and he said the swelling is due to sinusitus. He took another 3D scan of my head and showed me that my left maxillary sinus is still blocked. Almost completely. He printed it out for me and also sent it to my doctor's office. He said he is really sorry to hear all the pain I'm in but there's a diagnosis that my doctors need to be treating. I told him again that my doctors don't think it's my sinus but they are trying to rule it out and that's totally fine. I'll take this and see them today because I NEED help.

My doctors are a husband and wife team. I was dealing with the mister the past couple visits. The missus was who I saw today and they'd been discussing my case over the past couple days and they both have the consensus that it's TN. This was what she said before I was able to tell her about the 3D scan. I showed it to her and she studied it and she agreed with the dentists' findings and yes, there is a blockage. We checked to see if my sinus CT scans from the hospital had come back and they had only been dictated not typed. She said she would go download it and listen to it. She came back and said it was very long and complicated but what she got out of it was that yes, there is a blockage but that it looks like possibly a polyp or it looks like something that can occur from dental procedures and given that the radiologist knows about the history, says this is likely. They also said that there is something that looks like stitches or sutures that have been pulled open and healed. They also said something which my doctor was not ready to commit to, as she wanted to be sure that she heard it correctly. She said that it looked like there was metal in there. Freaked me out, that's for sure.

She says that it is possible to have a nasal polyp for several years and be asymptomatic. Even after this confirmed finding, she is not convinced that this is the underlying cause. It may be an aggravating factor but it is not the cause. They will wait and review the CT transcript and understand everything better but she still stands by her opinion and gut feeling that this is TN.

So, she gave me a small prescription for Carbampezine and some dilaudid. She is going to talk to an ENT and my dentist and of course her husband. I will see her again on Friday.

Here's to hoping that Carbampezine helps. I'm really happy with how she is dealing with this and involving everyone she can and taking charge to try to help me. I'm not happy with the pain but at least I feel like I'm being listened to.

I really hope it helps. You have to ready for the side effects. Do NOT drive until you know how you are reacting. Remember these drugs make ALL your nerves slow down, not just the trigeminal nerve. But if it gets you out of pain, it's worth it. Because right now you have to get the pain under control. These are truly zombie meds.

I do feel like it is helping! There are still break through pains but I was getting them even with the morphine and dilaudid and those are now getting to be few and far between and when they do come, they aren’t as sharp. They make me feel so weird though. Distant is the best word I can come up with. My doc has increased my dose because I was just on a tiny dose. 100 mg 2 times a day. Now she has me on 200 mg 2 times a day.

I was doing 800 mg a day.Believe it or not,you do get accustomed to it.It made me sleep really well too.Not much of a bright side,but it's the best i can do.I hated the meds,but at the same time i wouldn't want to be without them.Before the time release,i would set my alarm at god awful times in the middle of the night,just to pop a pill.I'm glad it is helping you.Hang in there!

Yeah, that's what my doctor said that eventually I will get used to the feeling. I've noticed I've been sleeping much better too which is a major plus. My sleep was in bits and pieces for the last few months. I really do feel like they are working so if they are, I think I'd rather deal with these feelings then the horrible headaches 24 hours a day and the pains shooting up my face! I realized a couple days ago that I haven't been waking up like that and as mopey as I've been about the morphine/dilaudid grogginess, nausea, etc. I'm actually so, so, so much better than I was.

Oh, it has been confirmed that I have root canal material and metal in my sinus. My doctor is certain that there's nerve damage to the trigeminal nerve as well. I meet with my dentist tomorrow to see what he's going to do to help fix his mess. My doctor is going to handle the TN part of his mistake and he's going to handle the other stuff.

I'm super frustrated by everything :( Thank you all for being here and listening to my story.

Understand somewhat what you are going through. I have confirmed TN, but I am mostly controlling the pain with Gabapentin (Brand name Neurontin). I do 2 pills (300 mg each) three times per day. Makes me a little dizzy, however much less side effects than when I was on Tegretol.