Advice on how to cope with TN type 2

Hello, all.

I’m fairly new to this site after spending a lot of time reading posts and discussions before I joined. I was reluctant to join as I didn’t know for sure that I had a neuralgia related condition. Needless to say this site was a comfort during the time I spent waiting for a diagnosis. I suppose I need to explain my personal story for my questions to make sense, or rather so many members freely share their experience I would like to do the same.

I had been suffering from left sided facial pain since July of last year, then it became severe in October. I had visited a doctor who said I simply had Tmj and with rest and anti inflammatory pills I’d be fine…he was so very wrong.

Strangely, unlike the majority of sufferers, my pain only started at night and would wake me out of a deep sleep. The pain also lacked the ‘electric shocks’ at this point and was mainly a sharp, boring, pain that lasted around 10 minutes. Then around January of this year my pain began to change, the attacks became worse and more frequent and lasted longer, along with my teeth becoming unusualy sensitive. I could no longer eat very hot or cold foods or foods that were hard or chewy. I thought every one of my teeth had gone rotten over night, but I had no abscess or infection or pain in my teeth from brushing or biting down. I was terribly frustrated and thought for sure the reason for my pain was dental.

By the end of Febuary I was being woken up by excrutiating pain every night, no OTC pain relievers worked only hot water bottles on my face that nearly burned my skin. I noticed twitching and numbness in my face along with the sensation of hot needles across my cheek, then I started getting sporadic attacks of pain in the day that had no obvious triggers. I felt a mild ache along my jaw line and a slight stabbing pain in my ear throughout the day, every day.

I saw a doctor on March 15th, by then I was exhausted and I could not contain my misery during my appointment. I had to explain my pain through sobs, I felt so embarrassed and quite pathetic but I was at the end of my tether.
The doctor immediately suggested that ‘Trigeminal Neuralgia’ may be the culprit . I had never heard of this condition before then but the doctor said I should go home and research the condition. He said I would be reffered to a Neurologist with my case marked as urgent. He said there were meds I could take to control the pain but he would prefer the neurologist prescribe them. He prescribed co-codamol until I saw the neuro.

I went home and looked up Trigeminal Neuralgia on Wikipedia, but I was not so sure I suffered from this. From then on I was glued to my ipad trying to find something that sounded more like what I was suffering from. Everything came up ‘dental absess’ or ‘sinus infection’ and of course ‘TMJ’.
Then I came across this site… THANK GOODENESS! I found that there was a second type of Trigeminal Neuralgia and felt so incredibly relieved that, although I’m in a lot of pain, I finally fit somewhere in the world of freakish face pain.

Unfortunately my pain had changed again, in late March I began to feel pain on the right side, from my temple down into my upper teeth, cheek and jaw. The pain would never occur on both sides at once, when one side was ‘active’ the other side was ‘silent’. But as usual the pain was far worse at night, resulting in barely an hour sleep per night. I then had my first electric shock, It lasted only a split second but I jumped out of my skin. I felt like I was walking around with a screwdriver wedged through my cheek that I couldn’t do anything about, along with numbness and shocks in the flesh of my cheek and below my earlobe. The co-codamol did nothing for the pain and I was left feeling very frightened that nothing could stop this pain.

I saw the Neurolgist on April the 18th, I was again extremely tearful and had had no sleep the night before my appointment. The neuro examined me thoroughly, ruling out Multiple Sclorosis I think. After hearing about my pain she stated it didn’t sound like Trigeminal Neuralgia pain but didn’t mention Atypical Trigeminal Neuralgia either, her diagnosis was ‘left sided facial pain’, although her report included the right side and ‘not consistent with classic tn’. She wants me to go for an MRI, and again my case is supposedly ‘urgent’. She prescribed Lyrica, increasing each week from 50mg to 300mg and Amitriptyline 20mg at night.
When I started taking the pills I felt them working because I felt like I had taken sleeping pills, for the first week I was relatively pain free. But a few weeks on I didn’t have have that sleepy feeling anymore and began to have bad pain at night again. Some days I feel like the medication is working and others I feel it is not.
A few days ago I had the worst pain so far, I was climbing the walls with pain and screaming into pillows. I had an emergency appointment with my doctor who said I should go straight to 300mg of Lyrica and phone my neurologist to push for the MRI as I still haven’t heard anything.

I’ve been okay for the past few nights, but I can still feel the ache in my face in the day which can get pretty bad. I’m absolutely terrified of going to bed, I’ve tried sleeping sitting up but I wake with pain all over my body and sciatica in my left leg.

I would like to know if anyone else has had a similar experience to me, being prescribed meds that don’t always work. Is it normal to still be in a lot if pain even when you’re taking meds? How do you cope with the prospect of constant pain?
If I feel I should be on higher dose can I call my Neurolgist and ask if I can change how much I take? I find it hard to push the matter and question what doctors say as I am quite reserved and shy by nature.
I’m falling apart with the lack of sleep and desperately seek some relief, if I find that the Lyrica does not work for me even on a higher dose, what does it mean? Is there something else I could try or does it rule out neuralgia? Will I ever have a pain free day again?

Thank you to anyone who takes the time to read and answer my questions.



Hi Amanda,

So sorry for all your pain. My story is somewhat like yours. I was awakened from a deep sleep with piercing/ pulsing / stabbing pains. This pain has escalated and morphed over the past three and a half years. It’s been a merry- go- round of doctors, pain clinics, neurologists, MRIs, CT scans, gamma camera, barium swallow…you name it. I do have dx of atypical neuralgia, glossopharyngeal neuralgia and hemifacial spasm. In the end what is working for me now while waiting to see a neurosurgeon is whopping amounts of gabapentin with an afternoon booster of tramadol. I also take sleep aids at night. Lyrica did not work for me and I can’t take either carbamazepine or trileptal. I understand the desperation of not being able to sleep and the agony of facing each day anew knowing what’s coming. I think you need to ask for the traditional TN meds: carbamazepine or gabapentin. It is known that these medications can work. Also ask for something to help you sleep for awhile. TN pain is worse when we are exhausted and worried and stressed. You really need a break from the cycle of pain. This will help you go forward.
Peace and Happiness


Sorry to hear about your pain. My neurologist didn't label my pain as TN, just atypical odontalgia..I was prescribed Amitriptyline which works for me..Many people on here take several medicines at a time..Just because Lyrica doesn't work for you doesn't mean you don't have some form of TN..You may just do better with a different medicine. Someone should post here about what works for them..Have your doctor/neurologist prescribe something else..Hope you feel better..

Awww - so sorry for your pain and suffering.... Are you in US?

Firstly, can you phone any of your doctors and TELL them that you need a prescription for Lidocaine Patches and Lidocaine Mouthwash....... These should relieve pain faster than any med -- for most! You don't need to see the doctor -- if you don't have insurance - lidocaine cream instead of patches is cheaper.

If you cannot question your doctors, bring somebody along who will! Even the ones that know something about TN are sometimes guessing at what med to try first, second.....

I could not tolerate the meds so I opted for MVD surgery ---98% pain free over 1.5 years later. I tried 3 meds in the same catagory.

But there are many many meds to try.

Can you get the book "Striking Back" by Dr. Ken Casey? It's sorta our bible here

You can have a pain free day...... ATN/TN is in remission when you are not in pain, it is still there, and is no cure.

Sounds like you have done alot of homework already! The more you know - the better outcomes you can grasp for, sooner.

Its terrible that most narcotics don't work for us -- or they work mildly, or for a short while. Many here have had Tramadol in their med mix or baclofen --

but always tweak up per doctor on the meds you are on before switching around.

Keep reading,asking, learning and be prepared to find yourself an advocate - a friend, social worker, family member.... and always take a list of questions that your doctor can read.

Keep Posting!

To bellalarke, lillyh and kc dancer.

Thank you so much for your kind words and sympathy.
I don’t know why I am so timid when it comes to questioning doctors and asking questions…well I know for one thing a lot of them have egos and don’t like being challenged!
I’m in the UK and have to rely on the over strained NHS. I have 2 months of 300mg of Lyrica and 20mg of Amitriptyline but I’m not sure they’re working. I may need to phone my neurologist and ask for an increase or a different med. I’ve had a strong burning pain along my left jaw all day today even though I’ve taken my meds.
I feel more confident when I know there are others out there who completely understand my pain.

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Hey Amanda,

I have been diagnosed with ATN and TMJ Disorder, which now turned out to be shifted jaw. Initially I was on 900 mg of Neurontin which I couldn't tolerate due to extreme fatigue. Then I was put on 150mg of Lyrica and a minimal dosage of antidepressants (after I mentioned to my psychiatrist that I couldn't handle the pain any longer and that I sometimes wish I wouldn't wake up the next day) and it helped. My energy level was pretty low, I was making typos, was slow looking for words...BUT I was able to function after 10 months or so of pain and depression. Pain killers, whether OTC or prescribed by my neuro, never worked for me - and I tried about 4 different brands. Everyone's so individual when it comes to this condition and treating pain. I also found that i got relief from acupuncture but not immediately and not with the first doctor. Physiotherapy and massage also helped me, physically and mentally wise.

This past month has been a nightmare because my pain got worse and it seems to have spread to different places around my mouth also (originally, it was limited to a couple of teeth in my lower jaw). It doesn't make me depressed though any longer, just very sad because at 33 I feel too young for this and the prospect of having this pain for life is too much to bear. But I keep thinking maybe there IS a light at the end of the tunnel... the pain may still go away or improve, maybe medicine will advance and find a definite cure for facial pain, maybe I will find my silver bullet by coincidence. In any case I think we shouldn't give up on ourselves, we are stronger than we think and one day we may be pain free on top of it:)

Take care of you,


Hi, Oli

Thank you for your advice. I know exactly what you mean when you say we are too young, I’m only 24 and the thought of having this pain for the rest of my life is too much to bear.
I guess this site’s best feature is the support it gives and uniting all sufferes world wide to keep everyone hopeful and strong.

All the best to you, Oli.

Hi Amanda,

So sorry tto hear about your dreadful pain.

I support everything that has been posted so far. TN is certainly made worse by lack of sleep and we have all been there.

I have had TN1 & 2 for twenty years plus now and opted for MVD last year because non of my meds were working any more and the pain was excruciating. At times the pain would drive me to tears. It became so bad that I didn't want to go out, see anyone or even eat (what a way to lose weight !!!).

Fortunately my Neuro was a woman who was very understanding and knew where I was coming from. The nurse was also very kind and understanding and between them they helped me with meds that took the pain away for awhile. I had tegretol and Gabapentin for a short time until I didn't respond to the meds any more.

My advice is the same as what others have advised: get different medications as quickly as possible because your health will suffer if you don't get adequate rest.

I wish you all the best and hope that you feel better soon. Good luck !


CH, thanks.

Will try to get ahold of my neuro and ask about different meds. TN most certainly impacts your social life. I’ve left work and uni due to the pain and lack of sleep…and I rarely leave the house. It’s a miserable existence. But I have hope.

I only had 3 days of shocks last year, so I did not expect Tegretol/Carbamazipine to help with the burning pain. I was tried on anti-depressants which helped some but not nearly enough. A month ago I started on Tegretol and within 2 weeks my pain level had dropped to a very tolerable level. It has been a world of difference. Hold out hope! There are so many different medications and tons of combinations. It will probably take a few tries to find the ones that work best for you.

Hope things get better soon!


Thanks, Jenny!

Will ask about Tegretol.

My heart goes out to all you young women just getting started in life. I am 59 and had 55 years without ATN and when I look back on them, with all the other big life issues I have faced, those 55 years feel like beautiful cool water compared to the sometimes endless burn of ATN. However, I do hold out for better solutions in the near future, medicine is changing rapidly. So please don’t look ahead to decades of this. That is too much. Just look as far as you can see now, getting more pain- free, perusing something that interests you madly! ( the best medicine).

Even if you can’t afford a massage therapist, there are many ways to work on your own body. It is important not to lose your sense of touch in your body that is good and pleasurable. Giving yourself a foot massage will bring your attention down the nerve pathways. Always, always remember that your body is still capable of good sensation, even when the head is ringing off the hook and feels like someone stuck a curling iron in there.

I have two daughters in their 30s and first grandchild coming soon. I am always doing what I can to make sure I can enjoy their company. I know how desperately hard that can be when we don’t want to lift our heads from the pillow. One lives far away and one lives fairly close. Travel is I big trigger for me but I make the effort because Love helps pain.

Well, I didn’t start out to write this epistle! But my best wishes go out to all of you.

Peace and happiness

Ps forgot to mention that I do a lot better with nortriptyline than amitriptyline. Just another thought.

Bellalarke, it’s really humbling to read your take on this horrible affliction. You have obviously endured a lot of pain and I’ve only had it for a year and I feel like I’m at the end of my tether. When ever I was really low I would come straight to this site, I have a desktop icon for this site on my ipad so one tap and I’m here, it would give me hope that I would find some relief.
I’ve got a good family who are all being really supportive, even though I’m 24, when I get bad pain I just want my mummy!

My heart goes out to you, best wishes.

I hope you can get ahold of a topical med to try… Go up to the groups tab… There you will find a UK group to join…maybe with more local help…and the topical meds group might have something listed that you can buy at pharmacy that we here are not able to get without prescription!

Thank you Amanda. I went quite some time before I found a mix of meds that help keep me on an even keel. There were times I thought I was not living a viable life. I have gone into that darkness and have come out for a love of my life even in the bad days that just make you wilt in wretchedness.

It’s funny that you mention you “just want my mummy” because that’s how I describe my first episode, the kind of pain that makes me want to call for mummy. Well, in my life I am the “mummy” and I am still called for and that is something wonderful.

In my darkest times my oldest daughter gave me her full keyboard electric piano to play with. I put it on low volume and taught myself a couple of beautiful piano pieces with a bit of help here and there. It was a bucket list thing for me, to learn how to play a musical instrument. An odd choice considering sound is a big trigger. But teaching myself something about the beauty of how the keyboard works, and how music works, gave my mind something new and intriguing to work on.

So I encourage everyone who feels hopeless and discouraged and riddled with pain to engage in something that fascinates them. Even for a few minutes at a time. A beautiful distraction!

Good to hear you have a supportive family. Let them love you and help you and love them back.

I am so sorry for the pain you are having/ My pain is different. It's the electric shock pain and is pretty bad. I was diagnosed with TMJ for over 10 years and none of the treatments I was given worked. I finally saw a neurologist who diagnosed me with TN and was prescribed Tegratol which worked within hours. I still have break through pain but life is so much better. I also bought a book on TN and it helps answer many questions. There are other meds to try and there is surgery when nothing else works. I hope you find answers and an improved quality of life.


That’s a great way to put it, Shindig, “pushing your case forward”. We always need to keep that front and centre.

So glad you’re down on amount of meds and the MVD helped tremendously! I got the idea of asking for nortriptyline from you and even the small amount I take stopped burning mouth…not so much the burning head but hey, I’m pushing forward-:slight_smile:
(Hope that job is going great!)

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Thank you all for your input.

Desert Dweller and Shindig, glad you have found the meds that work for you, I’m feeling much more confident to ask my neurologist for a higher dose or a different med.

And Bellalarke, I have a creative side that helps me deal with the pain. I fortunately finished University last year with a Creative Writing degree before the pain forced me to quit further education. I’m trying to write a book and I play the piano and guitar. Music is a big help for me along with fantastic friends and family for emotional support.

Best wishes to you all.

Wow, Amanda, it seems like I'm looking into a mirror, as a lot of what you wrote resonates with me. Even the timing is about the same! My neurologist thinks I probably have both Types 1 and 2, as the pain drastically fluctuates in intensity but never actually goes away. He has me on trileptal now (oxcarbazepine) - 600 mg, 3x/day. He says the intent is to get rid of the "parathesia" - or at least mask it so I don't feel any pain or numbness on a regular basis. The meds work sometimes - but not always. We're still trying to find the right dose, and I'm starting to come to terms with the fact that it might never completely go away. I also tried carbamazepine which worked well but I needed a dose so high and my bloodwork wasn't showing that I was processing it quickly enough, so my dr switched me to the oxcarbazepine.

I wish I had words of wisdom but don't - I can, however, offer my empathy. I've spent many doctor's appointments in tears and had many sleepless nights. And I am also timid about asking questions of my neurologist. I found that keeping a list in my phone as things come up helps - that way I remember to ask everything, and he knows that I've thought a lot about my questions so don't perceive any of them to be "stupid" questions. And I show him the list so he makes sure we get through all of my questions in my appt.

Also, one piece of advice that someone gave me that I found to be helpful: cut yourself a break, will ya? There are no quick fixes to this, so we just have to be patient until the right combination of solutions is found for you. This is all a big new experience and we have to learn to live life in a different way than we know - so it's ok to be tired and emotional and scared. It will get better with time - I have to keep thinking that. So maybe that would help you, too.

Hang in there!!!

As much as it’s strange to say, I’m really glad to read that Mel! It does help to know that someone else is in the same boat as you. I was really doubting it was neuralgia and seeing the neurologist made me doubt it more. I had a notebook filled with my pain over the period of 4 months and the neurologist didn’t want to know.
But I’m going to hang in there! Taking a high dose of Lyrica and Amitriptyline at night has done some good, I’ve had 7 nights good sleep for the first time in ages and I’m over the moon! You have take the victories where you can, no matter how small.