New to this site, looking for any tips and advice about options for someone with atypical Trigeminal neuralgia/ type 2

Welcome New Member Introductions
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I was diagnosed 1&1/2 years ago with ATN. My neurosurgeon supposes that I got this from a root canal I had when I was 17, seven years ago. My tooth was badly infected, and the dentist who originally performed the root canal removed only 3 nerves, when I had 4 because I was a teenager. So 6 months later when my gum was very swollen, and something was obviously still wrong with my #3 tooth, I saw an endodontist who immediately saw that I still have an infected nerve that needed to be removed. So because all that damage, it’s the only thing that makes sense as to what caused my to have atypical facial pain.

Before I was diagnosed, I had my #3 (upper right molar) tooth pulled. After I was diagnosed I was put on Trileptol, which didn’t help and just gave me horrible side effects. I’ve been on oxycodone and OxyContin since I had my tooth extracted 3 years ago now. That has been the ONLY thing that has given me relief from the non stop burning, throbbing, stabbing, aching pain that I have in my upper right jaw. It still feels like a tooth ache, but I have no tooth! I have also tried baclofen, gabapentin, and cymbalta. I was already on klonopin, before I even had my tooth pulled, for my anxiety and insomnia. It definitely helped with the anxiety and getting relaxed, but I never noticed it helping with my pain. But now that I haven’t been on it for a few months now, I do think it helped me in the fact that it relaxed me, and my pain isn’t as bad when I can finally get myself relaxed. My doctor switched me to Valium, which is a little bit stronger, but it didn’t seem to help me with my anxiety. Maybe it’s because my body has been on such strong narcotics and benzo’s forces so long now, it seems I’m tolerant to most anything.

For procedures, I’ve had the cyberknife, and 3 sphenopalentine ganglion nerve blocks ( sympathetic nerve blocks). Two of which I has done nasally. No relief whatsoever. My neurosurgeon said I am not eligible to get a MVD, as my MRI did not show any compressions. This is very disappointing, because I feel like I am out of options. But I would love to know, if you have ATN like me, what has helped you? I would like to learn more about acupuncture, Botox, cranial massage, and prolotherapy as far as procedure go. The medications I have yet to try are try cyclic anti depressants, specifically amitryptiline, and lyrica. I’m Leary about getting on the amitryptiline because of all of the nasty side effects I’ve read about, but at this point I am desperate to try anything that could possibly give me relief. So if you’re reading this and you have been on these, I would love to know your opinion and experience with them. I also need to find a good doctor who specializes in TN, I live in Phoenix, AZ. If anyone knows of a good doctor/neurologist/neurosurgeon in the south west, please share their information with me.

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Hello, I'm very sorry to hear about your suffering. I also have TN2 or atypical trigeminal neuralgia caused from a dental procedure (infection and extraction) in February 2015. It sounds like you've tried so much, but I urge you to try a tricyclic antidepressant. It may help to relieve the burning and aching pain that you have. Amitriptyline is the big gun of the tricyclics, with numerous side effects. Nortriptyline is also a tricyclic that is known for less side effects overall (including less weight gain.) Of course, everyone is different, but I've talked to many folks with ATN who have found significant relief with these. After exhausting a list of other medications, I finally used Amitriptyline. It helped quite a bit with pain - reduced it by 80%. But the weight gain and urinary retention was a big problem. I've tried MANY medications and was so sick of the brain fog, that I opted for an MVD, or rather internal neurolysis, since they did not find a compression on an MRI. It was not successful, which it often is not for ATN/TN2. I had a hotshot neurosurgeon who has had some success with MVD for ATN, but it didn't work for me. I'm back to the medications and immediately opted for Nortriptyline - I'm at 20mg, and it has been VERY helpful. I plan to increase it to 30mg and hope this will do it. I've used percocet on and off throughout these various med trials, and it would be nice to just NOT need it. I wish you the very best.

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Hey I have tn type 1 but I am amitriptryline and have found a big improvement with the pain, I still get twinges from time to time but nothing that stops me in my tracks now. I do find I’m quite groggy on it n spesh in the morning but I’d take that over the pain lol! There’s no harm trying and seeing how you get on but ultimately it’s up to you. I hope you find some relief soon :slight_smile:

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Your neurosurgeon is incorrect concerning your not being a candidate for MVD. Or at least his grounds for that position are incorrect. A substantial number of patients who have no visual evidence of nerve compression in an MRI are found to have compressions during the exploratory stage of an MVD. Unfortunately, however, MVD is much less often successful for people with Type II TN -- less than 40% success rates reported in some medical literature. I would also reinforce Sloan's message on the tricyclic antidepressant meds. They appear to be the most likely to provide relief for the types of pain you report.

This input is based on 19 years of studying the medical literature as a layman, and corresponding with thousands of face pain patients.

Regards and best,

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I’m around your age and I developed facial pain after a tooth extraction too. If the dentist caused nerve damage, a MVD will not help. The MVD pads the nerve at the level of the brain stem but dental nerve damage is more distal, at one of the terminal nerve branches. There may be success with nerve destruction procedures but it leaves you numb, and the nerves usually grow back more painful than before. The best surgical option is a nerve stimulator - a local surgeon here does motor cortex stimulator surgeries for dental injuries. It is not a cure, it just controls the pain much like a medication. Our best option is to find medications that can control the pain as much as possible. My symptoms are very similar to yours, and I also suffer from paraesthesia and allodynia. My pain is best controlled with carbamazepine. I tried acupuncture and physiotherapy. They both caused temporary exacerbations, but physiotherapy did help my locked up jaw muscles. The tricyclic antidepressants tend to help 1 in 3-4 people. Lyrica helps 1 in 7-8. It takes about 2-4 weeks to find out if you’re responding to something at a particular dose, so it might take months to years to find the right drug combo.

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Hi Michellejen,

It sounds like you have been through a lot. I'm so sorry for all of the pain you experience. Through reading what other people go through it seems that people that have neuropathy due to dental procedures have a harder time finding relief.

I also have ATN--bilateral in all three branches. Mine was not caused by dental work. I have a history of TN in my family. I have been on both Amitriptyline and Nortriptyline--about a year on each. Both of these meds have been my lifesavers. Yes Amitriptyline has some side effects but when I was in dire pain it was more then a fair trade off. I switched over to Nortriptyline and honestly the side effects were way less. Still the same type of side effects but definitely a better med. The side effects were--dry mouth and dry everything, fatigue ( I only took these meds before bed and never slept better in my life), sluggish in the morning and a definite problem with concentration and focusing.

But! I manage to work full time and care for my daughter...way better then when I was on no med in the beginning.

Do be careful with your search of treatments...if this was caused by a dental problem then invasive procedures used for true TN will not work and could make it worse.

Acupuncture has definitely helped me and I was in physiotherapy for a neck issue which ended up helping my facial pain and totally got rid of my migraines. I am starting to see a cranial osteopath later this week and will certainly share if it is helpful.

Jane

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Jane - do you take any other meds in addition to the nortriptyline?

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Hi Sloane,

I am actually off all meds right now as I am in a sort of remission. I had a long remission before and praying this one sticks around forever!

But I was on Nortriptyline for a year. And only Nortriptyline. It worked at 25mgs but I was as high as 75mgs last winter.

Some people have to take an anti-convulsant and a tricyclic together.

Jane
sloane said:

Jane - do you take any other meds in addition to the nortriptyline?

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I'm taking amitriptyline for TN2, it helps quite a lot, and helps me sleep too (that was a big problem for me because of the constant aching). I do feel groggy in the morning, but then I would do anyway without any sleep! I am only on a low dose though- I tried increasing it when I had a spell of worse pain, but I think it caused a racing heartbeat for a while which was scary, so I've settled for the lower dose and occasional days of more pain. I found it helped straight away, first night I took it!

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Folks,

We all are on the same boat and looking at the dates, looks like it is recent and we all are suffering from TN2. My question is is it a life long thing. Have any of you researched or talked to anyone who actually got 100% pain free. I came to know from two people and one was young 27 year, he got rid of it in 2 months after tegretol and another neighbor had to take medicine for 2 years.Most of the people i spoke/chat here are still suffering and trying different medicine or procedures. This is freaking me out thinking it is life long. I don't want to live a compromised life. Please suggest

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Swayam, I've been talking with TN patients for 20 years, since my wife first presented with bilateral TN-1/TN-2. You've asked a tough question, but i think you deserve an honest and balanced answer. Yes, TN is a life long thing -- however, be aware that I mean this is a bit different sense than some people might use. Among the over 12,000 people I've corresponded with or responded to in public forums, quite a few have had remissions of pain that lasted a good number of years, following either surgical procedures (primarily MVD or RF Rhizotomy) or finding a medication that worked well for them. "Quite a few" isn't the majority of folks you'll see at a site like this one, because the people who come here are generally in pain and looking for information or support. Whether a majority have long lasting positive outcomes, I can't say and I don't think even physicians really know with accuracy. Such folks tend to disappear after their pain is managed well.

I can say that my spouse has lived with TN for 20 years and had (and now has) a positive life where pain is controlled though never forgotten or completely "gone". I think she's one of thousands of people who could say the same. About half of all TN-1 patients who have MVD have persistent pain reduction or relief for periods of 12 years or more (at least those are the figures quoted in papers by Peter Janetta, MD, who did more MVD operations than anyone else). I've elsewhere talked with folks who have managed well on Tegretol, Trileptal, or Neurontin for periods of 15 years and more. So I know these outcomes DO happen.

Less positive outcomes also happen and they aren't trivial. Some folks aren't helped by drugs or surgery. Quite a number of people -especially with TN2- have natural resistance to anti-seizure meds or opioids. A few people can be actively allergic to some of the meds, with truly life-threatening reactions. And there is simply no way of knowing in advance which of these groups you may fall into now, or in the future. There just isn't.

So it can reasonably be said that once you've experienced the pain of either form of trigeminal neuropathic face pain, the odds are that this kind of pain will be at least a background issue for the rest of your life, even if you are pain free for years. I'm sorry that nobody can offer you the answer you wanted. But this is the answer which I believe medical experts would regard as the most true.

Go in Peace and Power

Red Lawhern,

Patient Advocate

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What do you about the pain sheild?

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Michellejen,
I would strongly encourage you to ask your doctor about trying nortriptyline. I have ATN due to a dental injury, as well. I’ve tried what seems like everything conservative and tons of meds and nortriptyline has been the only thing that has helped. I’ve done acupuncture, nerve blocks, cold laser therapy, chiropractic treatment, etc. to no avail. I really hope this works for you!

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I have atypical Trigeminal neuropathic pain from dental work three years ago. I tried Lyrica with many side effects. Withdrawal was horrific. I would not advise Lyrica myself.
I have had a one year remission.
It came back after dental work in January 2016,
This is what works for me:

Doxepin (TCA) 25mg. 3 times a day.
I take one as soon as I wake up
I take the second one around 6-8 hours later. I take the third
One 2 hours before sleep. This will make you sleepy at first.
I am 66 and still working every day.

Capsician cream 4 times a day. Use glove to apply or wash fingers with vinegar. Burning and redness will go away within
A week. This really kill the pain the best.

Compound cream made by a speciality pharmacy
Formula - 6% gabapentin, 10% Ketprofin, 5% Ketamine
4 times a day. My insurance would not pay for it

Sublingual B12 5,000 mcg from Vitamins shop - brand is Superior Source.

Peppermint oil, candy, gum.

I am able to work with very little pain. My pain will come some days only once or twice and last only a few seconds

When my pain continuous after the above, I will take aTramodal or 2.5 Xanax and I will get 8 hours relief.

However, I do not take these pills more than 1 or 2 times a week because I don’t want my body to build a tolerance to them.

I put both cream on face around tooth pain area, behind my ear and under jaw and down neck on bad side. This help with
Left ear pain and left side sore throat.

I hope these will you have a better life.

My pain is moderate at present.

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Please read my reply on August 22, 2016 for tips to ease your pain. J

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Hello, First let me say I am sorry for everyone’s pain…we are a club of very unique people where few know what we are going through and no one wants to be a member. I was diagnosed 8 years ago and my pain started after routine dental work. I believe my pI started by the perfect storm…my dentist had my mouth open too long and head turned and I believe he damaged the nerve with several injections. Around year 4 I was diagnosed with something called eagle syndrome where a ligiment at the base of my skull turned into s bone and was pressing against a nerve and sever Tmj. I was treated for both and got off all medications. Currently I broke a tooth in the same area and my pain has flaired up. I have learned you need to take a multi prong approach in dealing with this pain including looking at tight muscles in the face and neck which adds to nerve pain. Good luck to everyone

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Michellejen, What brand of Nortriptyline worked for you. For me i was totally pain free with Watson Starter kit, bu then i changed the insurance and in USA, watson brand is only available in kaiser, then i tried Nortriptyline activas, Teva, Taro, nothing worked. So bad… My doctor added Topamax also., Still didn’t help. He said he will change it to Ampitryptyline which is not so brand specific.

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I am very sympathetic with you. It happened so early of your age. It happened to me at my age of 40. I am totally devastated in my life. nobody can understand you more than me.i have exactly same case like you and same tooth like you. I live in southern california. i got two super doctors. Dr Andrew Pullinger and Dr. Ali Makki. They are the best in Souther california. Drive 6 hours and meet with them. They are the super super doctor. It took me 6 months and i was dying in pain. Finally after visting 28 doctors denitst neuro, ENT did a surgery, finally i met UCLA professor DR andew pullinger and he told me i have ATN. it is a very very long long story to write. you can call me 818-â– â– â– â– â– â– â– â–  if you want to share your story and listen mine. But dear, God has been very unfair to us. That much i can say. This is not cancer but it is worst than cancer. take care

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Hello,
I’m so sorry to hear you’ve joined this “rare,” group of us. I have been diagnosed with ATN as well. It started for me out of the blue one day in September of 1998 (I was 28 at the time and just starting my career as a teacher). It took me 16 years to get a diagnosis, so at least you’re ahead there. But this is not about me…

You asked about alternative ideas, and though you’ll probably have to stay on medications for this too, there are some things that help, but they take time and patience.

Chinese acupuncture did nothing for me, however Japanese acupuncture helped after about a year of going to weekly sessions (I was a teacher with awesome insurance at the time). I liked the acupuncturist too because she told me straight up, that she thought she could help me but it would take at least 9 months of the weekly sessions before I would see any progress. I did have a little relief but not enough to pay for that myself.

Eventually I tried a combo of weekly massage and bi-monthly Craniosachral therapy. The two together were the most effective alternative I’d found (and would recommend this route highly) until I found an amazing PT, who has Chronic Fatigue Syndrome, and called herself the “CSI of chronic pain.” She took me on pro-bono (I had quit my job and moved to a small town in AK by then- no insurance, no job, no money) because she was so interested in my case. She is a PT and a Craniosachral therapist, plus someone who understands chronic pain firsthand. She was my rock, my therapist sometimes, and my biggest advocate when I was struggling with docs who didn’t understand why I couldn’t get off the opioids completely (even after I had tapered down to a very reasonable dose). She was also awesome at her job. However, every time I would go to a session, my pain would really flare up for the day and night, but I would almost always notice improvement afterwards over the next 3-4 days, and eventually for the week.

I’ve seen many people on this site give up on massage, Craniosachral therapy, acupuncture, or other alternative methods for relieving pain after one or two sessions due to noticing immediate flare ups, and truly, everyone has to find the right acupuncturist, massage therapist and/or Craniosachral therapist for them so it might take going to different people, but don’t give up! You might flare up on the day of the treatment and possibly the day after, but notice if you feel an improvement overall in the next 2-4 days. If so, you’ve found one more “tool,” to use for this awful pain AND the length of relief might increase over time.

Good luck!
~Christy

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christyr27

Interesting to read your post.

In the main,“I’ve seen many people on this site give up on massage, Craniosachral therapy, acupuncture, or other alternative methods for relieving pain after one or two sessions due to noticing immediate flare ups”

For me immediate flare ups suggest said therapist is actually working in the area where inflammation is causing the pain- inflammation is our bodies way of attempting to heal. Hence a flare up after a treatment should actually be a positive sign not a negative, squeeze a zit, it leaves it angry for a day. Do any of these treatments directly affect a blood vessel in the head?

An important question might be, why am I suffering this complaint at this time (of onset), what is my situation at this time? Who addresses this question?

Get to a neurologist at this point and all he/ she is going to be interested is your symptoms/ diagnosis, drugs and potentially surgical referral.