I'm almost suspecting this is what I'm dealing with.

My dentist who EMG'ed me last year marked me down with Trigeminal Neuralgia, however I am not affected day to day as I have read those with TN describe it.

In the past I got the stabbing pain episodes, and this occurred over the course of a few months, randomly (4-5 times?). Then it just stopped completely.

I haven't had a repeat like that, but I've had dull boring pain in my left side of my face, to burning pain in my left side of my face, and what I originally suspected as burning mouth syndrome, which I believe has to be somehow connected to the idea of Trigeminal Neuralgia.

I read a bit about Atypical Trigeminal Neuralgia, and my pain pattern seems to fit this. Right now, I take no preventative medications for TN OR ATN. I have tried Carbamazepine and Neurontin, and I had bad side effects on both. I tried Amitriptyline, but during the time on Amitriptyline, I don't recall having burning or boring pain in the head like I do now. I stopped it, because I began taking it for burning mouth syndrome (which I believed I have, and that's still in the air) and felt it was not benefiting me much at all, plus I had a ton of side effects on Amitriptyline.

Now, I have only Clonazepam that I can tolerate, and has in the past helped the mouth pain. Surprisingly, it can also help the burning head pain, but it's very touch and go. Sometimes I get the pain, take Clonazepam, and it intensifies and I have to sleep it off (sleep is the only relief period). Other times, the Clonazepam is like a wonder drug to calm down the burning.

I quit smoking for the mouth and my mouth pain almost went away completely. Now, it's back since the burning in the head/scalp returned, but I experience my burning bilaterally (scalp to cheekbone on the left, in both cheeks and then on the right side of my tongue).

So perhaps what I have is not in fact burning mouth syndrome, migraine headache (what my neuro suspects) etc etc... perhaps I have atypical trigeminal neuralgia?

I certainly fit the pattern. I sleep, it goes away. I wake up, I'm pain free for the first few minutes after being up, and it gradually comes back again. It sticks around for weeks to months at a time.

Is there anyone of you fine NeuroTalk folks who has ATN (Atypical Trigeminal Neuralgia)? I'm looking for those who have this specifically, because I know convincing either my GP or neuro that I have regular TN (as my dentist's EMG showed) is a chore in itself, let alone telling them, "I have a suspicion I may have ATN" is going to be something out of this world.

Those with ATN... do you get this into your cheeks and mouth as well? The tongue? How about those with classic TN? Can it affect the mouth?

I hesitated to reply, but I see no one else has. I have both TN1 & 2(atypical). I have felt most of what you describe except that I do get fleeting pains in the tongue and in the throat, in the area of the sinus cavity(I can't explain where that is well enough, but if you google it, you should find it). Anway, some theorize that there is a pre-TN period which is the beginning of the demylination of the nerves. My TN started this way, with bouts of unrelenting pain which would go on for months at a time. Sometimes the pain felt like I was being stabbed repeatedly in various parts of my face. Then I noticed sensations of things moving on my face, when nothing was there. Then came the feelings of pressure on parts of my face, as though someone stuck a vice on my temple and kept increasing it, minute by minute, and then just left it there. And there are the drilling, boring pains that feel just like that, and my teeth feeling as though they are on fire, burning to no end. And, before and during all of this, all the tooth pain to teeth which had root canals done to them, but still I was encountering excrutiating pain. Those are some examples, but this @%&(%#@ condition continues to present new scenarios to me all the time. I should also add that I have it bilaterally although one side is a lot more active than the other.

It took a long time for me to get diagnosed. I had conflicting opinions from a couple of doctors and was constantly being told I had sinus infections, when it was actually TN. I hope my description helps you.

Take care, ellena

I am SO glad you replied Ellena

I have the dentist EMG saying "Trigeminal Neuralgia" from a year ago. The additional sensations you described "I have felt most of what you describe except that I do get fleeting pains in the tongue and in the throat, in the area of the sinus cavity(I can't explain where that is well enough, but if you google it, you should find it)." <~~~ EXACTLY what I experience as well.

I also have Multiple Sclerosis. I know that 1. TN with MS is not unheard of, but not 'common', and 2. A diagnosis of ATN with MS is even more unheard of, as you can imagine. But I do believe this is what I'm facing.

When my mouth 'pain' went away (I thought BMS - burning mouth syndrome) after I quit smoking, it was probably due to quitting sure... i was irritating the heck out of my mouth! But then out of nowhere, I begin Depo Provera, and BAM, comes the return of TN/ATN sensations and pains. Plus the mouth began to burn again, in the area of the cheeks (mostly little lightning bolt stabs off and on), and in the tongue and throat.

Mine is bilateral as well. Left side is MUCH more active than the right side for me. Which side is it for you?

Should make for an interesting conversation with my neurologist on Monday when I see him. I am considering Nortriptyline (low dose) as a possible preventative. What medications have you found that have helped you? Or are you medication free or natural?

Edit: my first 'meeting' with TN was type 1 I'm pretty sure. It was episodes that lasted for a few hours (till I could pass out from the pain and exhaustion basically) of stabbing pain that made me curl into a ball on the floor. This happened when I was on Depo Provera years ago... I'd say 4 or 5 now. Possibly however this could have been my onset MS 'attack' or symptom, since in a % of MS cases, TN attacks (type 1 I believe more so) are seen as the first symptom. I had almost a type 1 incident the other day, but thankfully, while it stabbed in the left side a few times, it didn't bring me to my knees. I find a hot soak when I get terrible head pain really helps to calm it down in severity though.

I don't have MS so I can't make any comparisons regarding that, but I do know that early on, an MRI was done to rule out MS as a cause for my face pain. I also don'e have BMS, so I can't help you there. If you read posts by other people, you'll see that this condition presents itself differently to everyone. The classic lightening bolt pains, the nature of the pain, and finally what the pain responds to is part of the diagnostic process. I was first given Trileptal and my pain disappeared. I've gone through too many meds, both sinularly and in various combinations, and I still treat with meds. I can't do without them as I haven't had a remission in a several years. Most people do have to go through quite a few to find something that will work for them. You need to speak with your doctor concerning all of this to find out what you do have. He/she is the best person to sort out your symptoms. Take care!

Hi, I'm always sorry to see a new face here - not that you are not welcome, of course, - just that there is another person out there suffering with this demonic pain.

I can't offer much info except that I have also been diagnosed with the Atypical TN. My pain is way milder than anyone else on here I think, but when it hurts it really hurts. So far all of my pain is concentrated in my right ear and the immediate area surrounding it. I was told for years that I had an inner ear problem, but I knew it was so sporadic that it had to be something else. Thank God, my attacks are infrequent enough that I can still have a normal life. But when I do have an episode it feels like a big drill bit (the old kind with the wood door knob looking handle on top that you had to manually turn) has been heated and slowly boring into my ear. The outside of my ear is paniful to the touch and any movement such as turning my head, smiling, talking, eating, etc. causes more pain. Then as an added effect there are the intermittent "ice pick" jabs as well. My neuro prescribed the tegretol and said I could take it only when I had an episode. Well it takes about two doses @ 200mg each to help and then I am zombied out for the next 24 hours and can not wake up enough to go to work. Oddly enough, applying heat to my ear helps more than anything else. I am trying to figure out some sort of head band that I can attach heat bag to so I can use it at work. LOL I know that will look funny.

I seem to go for 6-8 weeks wthout an episode, then I will have about 3 withn a week. I just had one on Tuesday, so I am expecting the other 2 any day now. I also know from reading these posts that I am probably in the pre TN stage and can expect the worst to come later.

So sorry that your pain and others is so intense - I will continue to pray for all of you and that a new form of relief will come our way.

Take care,
Rhonda

Hello Rhonda. Nice to hear from you!

Actually, this doesn't sound odd at all. When I get into a state of facial burning pain and the lightning bolts, I get in the bathtub (really hot water) and something about the heat reduces the intensity of the condition/pain. Odd huh? MS'ers are supposed to hate heat!

I see my neuro Monday thankfully, and I'm going to tell him simply "Ok so you found MS in March, please don't stop there, because I think there's more going on in my body than simply MS". TN as I say was already pointed out by my dentist. I have the burning mouth crud, but that in itself MAY be Lupus (which my mother has). I just fear they stopped at MS and decided "That's the cause of your pain, MS". And will just leave it at that. Ugh!

Hang in there folks, I feel for you.

Hello anyone and everyone out there,
I have never attempted to contact anyone with similar symtoms to mine via an online community so I don't know what to expect. I have pretty classic symtoms of Geniculate Neuralgia -not only experiencing the "ice-pick" attacks of pain but also tinnitus, vertigo, and auditory disturbances. I'm desperate to establish ties with one or two people at least who can relate to the same experiences as me and perhaps we can be a source of support for each other when needs arise. Just knowing that someone else can understand what you're feeling (even if they are 2000 miles away,) can be a great comfort. Thanks for your time.

Hi Jinxter, glad to meet you. If I am not mistaken, the ear pain I experience is more like the geniculate Neuralgia, but my neuro says it is all connected so they just lump it all together as TN. However, I do not get the other symptoms that you mention, but I get a lot of motion sickness for no apparent reason. Sometimes, just bending over and raising back up will set off an all day nausea event - I never throw up, just feel really yuk! I have had this problem for years and all the other doctors before have insisted it was an inner ear infection, sinus, etc. After two MRI's they finally ruled that out and nothing was left but TN.

Have a great day!

I don't know how you do with the Tegretol and its side effects but I get up to 1000 mgs during my attacks and I get NO relief from it. My neuro asked me last week when I asked for a refill why I take it then and I said, "at least I'm being proactive- if you tell me pulling my eyelids across the room might help I would give it a shot!" Good luck!

My dentist diagnosed my ATN, after my MS diagnosis. My neuro didn't see anything in the MRI to cause the pain in my ear/jaw, so she sent me to a head & neck/ENT doc, who said I had TMG and sent me to the dentist.

My pain is similar to Bassetcase, any touch of the ear can send me through the roof. My ear aches, though I can tell the pain is not in the ear itself. It feels like someone has put a needle and thread through my eardrum and is pulling on the needle, then hitting my ear with an iron pan. My pain doesn't come and go in moments or hours, but is non-stop for days or weeks. Some days the pain isn't too bad, and then there are days like today, where wearing headphones to transcribe dictation is almost beyond endurance.

I can also get pains in my upper jaw/teeth, though I have nothing wrong with my teeth, and wear a night guard so I know it's not TMG pain. I even get pains behind my eyes and down my neck. It is worse on my right side and getting worse, and now progressing on my left side. I have trouble sleeping, because I can't rest my head on my right side. I don't know what I'm going to do when both sides kick into high gear at the same time

I don't know how unusual it is to have TN/ATN with MS, but if someone can have atypical anything, its me. I generally break with averages: average disease courses, or respond to average treatment in the average way. I guess I'm just above average Still working on meditation with this pain. It works for migraine, but so far, not for this.