Advice from people who suffer from both types of Trigeminal Neuraligia

I would like to get some advice from anyone who suffers from both types of TN.....I am more intrested in the second type if i am correct the one where there is a constant dull ache 24/7. If you do suffer from this, could you tell me if you do anything to help with the dull ache, Our daughter apply's hard pressure to the back of her ears at the start of the jaw, her fingers are there all the time she is awake, has anyone else done this?...also does it affect hair washing,hair brushing, can it affect your social life,do you just want to be alone,isolated, the reason i ask is our daughter with Autism could be suffering from both types, we have had assesments done and with history of TN In the family this looks like the case with Amy. she is non-verbal so all we have to go on is observation at all times and advice from suffers themself's, she has been on medication Amitriptyline which has decresed some episodes for Amy..anything you can tell me about the type 2 condition i would be most grateful...with love and peace to you all. Sarah xxx

I have both. I also have bilateral TN
The TN one on my right is controlled by meds.
The left side started as TN2 ( constant burning pain in my lower teeth, ice pick in my ear)
And now it has progressed that I also get TN1 on this side.

My saving grace as meds aren’t working on my left is a Heating Pad, I reheat constantly in the microwave and it takes the edge off, it doesn’t completely take away pain, but it does make it more tolerable. When the pain is high, it is a comfort.

Mine is called the Magic Sac.

((( hugs)))

Hi Sarah,

I agree with Shindig, I wouldn't consider it a dull ache at all. I have a constant burning pain (feels like someone threw acid on my face). I can't actually touch the right side of my face where it hurts, but I do press on the opposite side of my face. For some reason pressure seems to help short term. I find myself touching the left side almost constantly on some days, pressing on my mouth, pushing on my jaw. I don;t know why this helps but it does. I use a lot of ice on my face, the cold seems to calm down the burning. I usually put ice on the back of my right ear or my neck. I have also tried putting ice (tiny ice cubes like the ones in fountain drinks) in the inside of my mouth on the right side.

Talking or chewing can trigger very painful episodes. Everything gets cut up into small bites and I only chew on the opposite of my mouth. The cold air also affects me, covering my face doesn't help because of the sensitivity.

It has affected hair washing and teeth brushing. I used to wash my hair every day, now I will let it go up to 3 days and when I do wash it I never touch the front of my scalp near the hairline. I have noticed with teeth brushing that hitting the inside of my cheek can cause a flair. Baby tooth brushes have been a life saver - my daughter loves to pick out my tooth brushes now!

I have plenty of time where I stay in bed - I've become the person who would rather stay in all weekend than go anywhere or have people over. I know it's affected my youngest daughter the most (she's 8). She spends a lot of time in my bed with me, watching movies, playing games, etc. but she's also developed "headaches". It breaks my heart.

I've started on Gabapentin which has been a life saver so far. I've had up to a week without the acid like pain, it;s taken it down to a dull ache some days. I'm also taking Tegretol (1200 mg) a day and bumping it up if needed.

God love your daughter, it's such a awful thing to go through. It's such a trial and error experience and what works for one may not work for you (or work for a week). I hope you can gather some helpful information on this site and she can get some relief.


I have and have had a boring pain in the ear, with an occasional feeling like an ice pick has been jabbed into my ear drum. I had an MVD and it got rid of most of my pain, but the boring ear pain is still there. I take Celexia 10mg which is an anti-depressant and it helps keep it under control, I get a pain about once a day, and the funny thing is, its always around the same time of day. I have no triggers and never had triggers for this disorder, it just did its own thing.

I also took my migraine pills ( narcotics) for the pain when it got bad, although I no longer really need pain killers, the anti-depressant keeps it under control.

I am so sorry for what you are going through, it must be so difficult. Please remember to take time for yourself in all this, its extremely stressful for you as well, and I am so sorry that you must endure TN along with your daugter.

Wendy "crashgirl:

Hi Cleo,Amy is 8yrs old nearly 9 her last dental check-up was a hospital appointment last year, where she was under-sedation to have her teeth looked at and had some removed.. we thought at first this might be why we were seeing alot of self-harm as Amy would and bang her fist on her mouth, but after the teeth were removed and the all-clear was given Amy still displayed the same behaviour,..It seems as though the right side might be affected more than the left as she will not let me touch that side,but will tolerate some touching her face on the left side.she will also quite often raise her right shoulder towards her right ear and lean onto it..if you get what i mean.xx

Cleo said:

how old is amy and when was her last dental checkup?

Oh gosh this must be rough on your family. If I remember right your husband suffers from TN also? For me it’s all day thing, there’s pressure and that burning feeling your muscles have after you’ve been running really hard, it’s hard to describe. Thru out the day the pain will chane and it can feel like anything from my jaw and cheek bone being shattered to teeth being ripped out or someone slicing my flesh on my face. Not nice feelings. I take Lyrica and a couple of long lasting and short acting opioids to keep the pain levels down. In a really bad episode ill try to go to sleep or after I will fall asleep not sure why on this second one. If you had pictures like flash cards could you find a why to communicate with these for her to let you how it hurts or if she is in pain. The lack of communication has to be the hardest part I would guess and maybe finding some way even just a small way might help.

TN can be brought on by anything. I actual will put off washing my hair as long as possible, gross I know but the water trickling down my face can be a trigger that I’d rather avoid; last thing I was is my hubby to have to help me out of the tub cause I’m in a nasty pain episode. Talking, chewing / anything in my mouth, a slight breeze, teeth brushing, smiling laughing are all things that can be a trigger. When in a particular bad pain episode I want to be left alone in the dark where’s cool, dark and quite. Because tn can be triggered by social actuvities such as talking and most people do not want to be around others when in pain you can be ain’t social.

Hope this helps a little and I wish I had better answers for you but everyone is so different from the next with this affliction.

I had TN and ATN on the left side. My family would know when I was in a lot of pain because I would not smile and I would have my hand on my face putting pressure with my fingers on the corner of my eye (by the bridge of the nose) and on the bottom part of my jaw near my ear. I wouldn’t even notice that I was doing it until someone told me. I would also squeeze my head as hard as possible. It didn’t get rid of the pain but it would soothe me somehow. One thing that took me a while to realize was how much I avoided cold things. Everything I drank was room temperature, I would let ice cream melt before eating it and I was brushing my teeth with warm water.

It’s incredible how we can adapt to things w/o noticing. Maybe you can ask a family member or friend that isn’t around Amy every day to help you pick up on things she does. We did that with a family member of mine and it ended up being helpful.

First I would like to day, your story breaks my heart. I really hope you guys can get some help soon.

To answer your question, I have a dull ache/pressure on most days. I try to explain it as a headache on one side of my face. I do my best to ignore it and ibuprofen, if I can't!. I take about 600mg of carbamazepine daily, more if needed. I feel, I take that more for the break thu pain, not the everyday pain.

For the every day ache, I do press on it. I had my boss ask me the other day if "pressing" on it, made it better. I tried to explain it as when you hit your knee on something, your natural reaction is to grab for it and rub it, right? Does it make you knee feel better? I don't think so, its just a natural reaction your body has while in pain.

Also, just to throw in the mix. I get pains of a hot poker in my ear . . maybe thats why she's doing some head tilting?


Oh you are so very welcome and I’m really sorry you guys are have to go through this. Please continue to ask any question you want. I hope you all have a great day that is pain free for Amy.

Ask away Sarah, thats what we are here for...anything to help, you have a lot on your plate. I think I can speak for everyone on here and say its our pleasure to help


I have left sided ATN. I often find my fingers pressing on my left temple. Pressure for short periods is sometimes good, especially if I do it intentionally. Feathery accidental touches are the worst. But sometimes I just don’t know. Keeping my hands off my face or the back of neck and scalp is something I have to pay attention to.

I also try to wash my hair only every three days or so, although I’ve had to go longer at times. I can run my finers through my hair on the right side but not left. sometimes though it feels good to intentionally massage my scalp on the left but not for long and it has to be done with just the right pressure. Teeth brushing and flossing pretty grim too. Last week was not too bad but this week is awful and it always comes as a shock after having a few good days.

I take gabapentin and tramadol as an afternoon add-on. I had serious issues with some of the other meds.

Talking worst enemy and I’m such a talker so now I parcel it out. During bad flares I will need several days of literally being speechless to settle the pain down.

Having this pain is like driving through a landscape that you know very well but the palette and soundtrack is always changing. You can never nail it down.

I have grown children, it still hurts me when they are not well. I can only imagine the ache you must carry for Amy. Watch her hands, they will tell you a lot. All my very best wishes.