Atypical Trigeminal Neuralgia
 

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 :hug:

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!

I too diagnosed with atypical tn
 

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! :p

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. :grouphug:

Newly Diagnosed with Geniculate Neuralgia
 

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.

Welcome to the Club!
 

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!

Tegretol
 

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!

Atypical TN Too
 

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:eek:

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 :wink: Still working on meditation with this pain. It works for migraine, but so far, not for this.

There's a fair percentage of MS'ers with TN or ATN.. now granted, ATN is less common than TN in itself.

I had my first manifestation of TN in the form of type 1 (classic TN?) attack me 5 years back (approx). It was short lived. I then within the past 2-3 years have experiened the ATN variety off and on.

It was a dentist in my case that diagnosed my TN (non specific) following EMG. I can recall them trying me on Carbamazepine back then, and wouldn't you know it, I'm one of the 'lucky' ones that experienced a very rare side effect, pitch perception (with music). Go figure!

I also can't take Neurontin (Gabapentin) due to the side effects it caused me.

I'm at a loss as to what I can take now, besides Clonazepam that I need to wean off, because while my doctor prescribed "As needed", it's not a good thing when 9/10 days pain relief is "As needed" is it? :cool:

Clonazepam is the ONLY drug that bites through the burning pain I get however. So I don't know where we'll go next. Additionally, there is surgery as an option, but it's less likely to be successful I read in cases of ATN versus type 1 TN.

In any event, it is nice to know we're not alone. I've met folks too in other places outside of NT who also have TN. I think TN is one of those underreported conditions to be fair, and mis/undiagnosed as well.

Laura, the only thing that works for me is Butalbital (generic name for Fioricet), which dulls the exquisite pain, and puts me to sleep.

but because it's a barbiturate (with caffeine and Tylenol) it cannot be mixed with alcohol.

like you, I cannot take Neurontin (rare side effect, made me extremely loopy, I'll spare you the graphic description after only two doses), Pharmacist and Neuro both said "Make SURE you never take it again!"

I was recently diagnosed with ATN, and have had MS for nearly 21 years.

mine was said to be "Atypical" because it's bilateral, an equal side-of-the-head striker.

TN can affect some or all of these areas usually on one side of the face although more rarely (in about 5% of cases) it is bilateral.

http://www.mult-sclerosis.org/trigeminalneuralgia.html

I get quick icepick stabs, mostly in my right ear, sometimes behind my right ear, sometimes in my upper cheekbone area, and sometimes elsewhere on my head.

more rarely, the TN zings my lower jaw, and less frequently, inside the left ear.

least frequently, is a low, dull throbbing pain that sticks around for hours, it's bearable, if I lay down, rest, and darken the room.

and nobody better TALK to me while it's going on, as my usual self-control goes out the window.

TN is my *least* favorite symptom of MS.

:(:mad::(

more info here, on research and treatment:

http://www.mult-sclerosis.org/news/A...Neuralgia.html

I'm really curious for my neuro to MRI me again, more closely. They only MRI'ed my brain. I'm not even sure if the brain stem was MRI'ed during it, but it would be interesting to see what's happening there.

Burning mouth and TN/ATN. I'm betting it's a hotbed of activity.

So there are a few of us MS'ers here that have the dreaded TN or ATN. :grouphug:

Definitely the worst symptom, BY FAR!

Do you find that your TN is aggravated by weather or pressure changes? I find this can set mine off.

Pressure changes
 

Well, I do not have the MS, but flying is out of the question. For years, I was holding my head writhing with pain while everyone else was joyously celebrating the vacation, family reunion or whatever event we were going to attend. Every one kept asking me, "Well, why don't you just chew some gum, or hold your nose and blow lightly to clear your ears ?" They thought I was being a wimp, and I certainly could not understand why I had such a time with it. Until I was diagnosed with the TN - also, if my sinuses get stopped up or I have a cold, it is likely to set off an episode. I would assume that anytime there is more pressure in your head everything is compressed and increases the pressure on the affected nerve.

Dm and Basset.
Sorry for the pains your are both living with. All of us have diffrent triggers.
Weather and pressure change is a huge one . I get triggered by wind and brezzes, chewing sometimes , brushing teeth on left side. And cold weather my steel plates get cold and then I am a mess :(
We Are Not Wimps ! We have an invisible monster chewing on us ! Far from wimps lol. :hug:
Write down things that you find trigger your pain to flare or eppisode to come and try to accomadate , avoid or learn new way to "deal" .
:hug:
:hug:
Low pain wishes for you both
PEACE
BMW

Basset, that's wild. I actually flew in October (I had not in years) and was ok doing that.

I think what set off this most recent attack of TN for me was the Depo Provera shot honestly. The burning pain in my face/head has been an on again/off again phenomenon for me, but it really went haywire with the shot.

Yesterday I felt dreadful. It was sunny, dry and mild. Today I felt fine and it was raining all day. Go figure huh?

While I'm here... anyone else experience taste alteration with their TN? I've noticed taste changes with my case. Not every day, but the odd time I'll notice a strange taste in my mouth. Sometimes I can honestly say "metallic", but other times it's almost like phantom smells that MS causes for me. I wonder if the taste oddities are linked to the MS or the TN :p

BC, flying is out of the question for me too. I've had one of my worst, early attacks following a flight. My current doctor just dismissed it, but I don't.

Phantom smells ...
 

Yeah, BMW I just don't fly anymore - my husband travels constantly for his work, and we have gobs of airmiles, but I won't use them. Actually, I always hated to fly anyway, but with the ear pain it is out of the question. I fear that one day I will have to fly due to emergency and it will realy be bad.

Hey DM, I'm glad you mentioned the taste/smell changes. I have started to post this before, but just haven't. The only time I experience this is after I have taken the tegretol. Since I only take it when I have an episode, I probably just haven't adjusted to it and it is a side effect of the drug. But, the really weird part is that it makes me smell "marijuana smoke". I know that's crazy, but I swear that is what it smells like. I will just be walking down the hall at work, home, etc. and all of sudden I just get a whiff of it. And believe me this is not something that has been embedded in my brain longing for my younger years - I was a good kid and was afraid to smoke the stuff, but I was around a lot of friends that were, so I do recall the smell. This usually lasts for about 24 hours after taking the tegretol.

Then one time, I could swear my husband was baking cookies - it smelled just like fresh baked cookies - much better than the pot. :)

Peace and less pain to all......

Rhonda

Oh I have to touch on what Dm asked about odd tatse.
I thought it was just me .I have bad matalic taste ALL the time . I thoiught it was just me cus i have steel plates in both side of lower and also steel strips aorund gum line and posts for fake teeth. So I just thinking with all that "junk" for my mouth and jaw ..corse I am bound to have that matalic tatse . This is intresting.
I havent found that I have odd smells issue , but I have found my smelling has been ... better. I can smell things beofre my kids or hub. They kid me soimetimes and say i have blood hound in me .
I cant fly and even when I go driving in mountians in carolinas / virginia that gets me .
Pressure change can most definatly affect T.N., O.N. and all that !!!!!!! EE03 dont let doc dismiss it. :hug: plenty of us have that as a trigger.
Gotta get going .
Low pain great week is wished for all of you.
:grouphug:
PEACE
BMW

Yes BMW, mountain driving gets to me too. My doctor is old school and seems to dismiss lots of things. It seems all TN'ers know these things better than docs :rolleyes:. Low pain wishes and :grouphug: to all!

You know, I wonder how many of us have whackiness going on in our brain stems? :p

A lot of the sensory stuff to do with the face/senses such as taste and smell point back to brain stem issues/lesions etc.

Maybe not all of us have been diagnosed with MS.. but lesions can occur with other conditions as well. Does TN in itself cause lesions or result in? I haven't done much reading on TN apart from MS, so you'll have to teach me a bit.

When my TN flares, the taste gets altered. That much is for sure. When taste gets altered, often smell does as well.

Marijuana is 1 smell that I can relate to smelling when it's not actually present. With MS we often refer to these smells that are not actually there as 'phantom smells'. It's a recognized phenomenon ;).

I have ATN
 

I have a been told that I also have ATN. I have had mvd surgery that helped the typical shocks of TN but I still have pain in my teeth and gumline area as well as my cheek area. The doc says it is ATN which to him means it is hard to treat and unexplainable. No med or treatment that I have tried yet has helped except for lortab. My neuro says that TN patients shouldn't get relieve from lortab but oh well I do. I hope this helps. I know that trying to explain this to docs is hard but I hope you have good luck!

Thanks Jess. My neuro actually didn't brush me off when I said "Atypical Trigeminal Neuralgia" and explained the pain pattern. He agreed with my dentists suspicions, but I'm almost curious to go with more testing to see what comes up.

I find I'm helped by Clonazepam, but it's tough when you have to take it daily for a lengthy period, because then when you want to stop taking it, you have to wean off it which can be tough.

My TN started with pain in my teeth. I would go to the dentist complaining of pain on the right side. Eventually, I had a root canal on every tooth on the right side of my mouth trying to battle the pain. It was useless. When that didn't work I was sent to the Endodontist, who after an unsuccessful root end resection, decided to send me to the neurologist. Kudos to the Endodontist that recognized the TN.

Resurrecting this thread as one of the diagnoses I have from my neurologist (I am fairly new to the board) is "atypical facial pain"/"atypical trigeminal neurgalgia". Mine sometimes is pain, sometimes is a tingling/electircal/ticklish [but not pleasent ticklish] feeling, or a tingling like when your foot goes to sleep sorta feeling, and sometimes is more like a pressure feeling, too...Even maybe a "shooting" pressure feeling, if that makes *any* sense (it is a hard feeling to describe, 'shooting pressure' or 'stabbing pressure' is the best I can come up with, I think...). Sometimes there is a numbness component to it, or a numbness-and-yet-increased sensitivity component to it. Or sometimes it's a very hard feeling to describe at all, except that, despite not being pain *per se* at that point, it is a distracting/annoying enough just *sensation* to make me wanna tear my face off to get rid of the ticklish/tingly/pressure/shooting pressure.increased sensation.whatever. Anyone else had anything similar?

I 'had' classic TN with electric stabs in the left ear, cheek and jaw. The shocks would morph into a continual burning. I didn't have mouth or tongue pain although movement of my tongue would often trigger a shock. Hope this info helps. Best of luck and hope you have pain-free days ahead.

Todd

HI guys,

I am officially joinging the group here in this forum.

I have ATN or secondary TN from a HSV1 viral infection that was caused by dental work.

I guess the virus lives in my trigeminal nerve and the trauma of the dental work caused it to flare.

It affects the v1 branch on my left side and the v2 and v3 on the right. It has also wreaked havoc on my occipital nerves as well.

Hope to learn from all of you. :)

:grouphug:

I've only had the one attack of TN (thank goodness) but strangely enough, mine too followed a dental procedure. It mostly attacked my jaw along the lower branch of my trigeminal nerve, and was treated with Tegretol.

Thedspeth and Shelley, I have no idea whether my TN was typical or atypical, but I wanted to let you both know that some-one is thinking of you! :grouphug:

I hope you both get relief soon as I sure do remember how nasty those shooting sharp pains can be.:(

Sending you both lots of positive healing thoughts and prayers. :smileypray:

((((Koala))))) thanks so much for your post and support. I am so bummed that this all seems caused by a dental procedure. It truly sucks especially since I am only half way through the implant procedure.

But I finally think I have some good docs on the case so just hoping they can reduce the pain so I can manage my way through life until this resolves hopefully. :)

I posted this in another ATN thread but wanted to add it here. I have been suffering for years and also endured the misdiagnoses of migraines, TMJ, and sinus problems - finally after a trip to the ER I went to a neuro who listened to what has been going on and diagnosed ATN. When I researched ATN I was shocked at how my symptoms fit - what a relief to know what was happening to me...........
--------------------------------
Hi - I was also diagnosed with Atypical Trigeminal Neuralgia and was at the point of begging my neuro for just one day of relief from the pain.
He perscribed Lyrica and it is a godsend for me!! The side effects are annoying such as feeling loopy, weight gain and unable to concentrate - but the the relief from the ATN pain in my face is worth it! Not sure if this will help - but I've read that they are just beginning to use Lyrica for ATN, so maybe it's an option you haven't tried. I hope you too can find some relief.. it's truly a debilitating disease! Best to you, Barbara.

Question for Aliya
 

I was looking at various postings and saw yours describing bilateral facial pain that was very much like mine (numbness, tingling, deep pain on both sides). I was diagnoses several months ago. Anyway, I was wondering if you got better (I hope the answer is yes!) and if not what medications you are taking or how you are coping. A little about me: I am a 43 year old lawyer and mom living in NYC. This is no fun! All the best, Marnie

Hi I have ATN also, I have had it since 2004. I just wanted to add to the "phantom smell" postings. When my flare ups are particularly bad I get the wonderful gift of smelling dirty cat litter! It's just awful! No matter where I am or what I'm doing it's constantly with me. It can last from a day to weeks. When it feels like it's went on forever I tend to get pretty agitated about it since it's not much fun trying to eat and that's what you smell. The first time I had my episode I thought for sure it was me or my clothes smelling that way. I couldn't understand why I smelled it since I always wear body spray. I went around work that first day making my co-workers smell me and swear they would tell me the truth if it was me! Needless to say they thought I was crazy! I have brought this up to several different drs. I have seen thru the years and they all have never once addressed it or explained it to me. Thank goodness for this board or I would never have known for sure it is connected. I've learned just to take it day by day as I do my ATN and know the really bad days will subside.

Dental EMG?
 

What is a dental EMG? Is that the same as an EMG of the mouth? Can an EMG actually reveal TN? (Or are you referring to an MRI of the trigeminal nerves?)

Phantom Smells
 

I just started on tegretol this week (thank goodness its helping) and I was smelling that too. I was about to ask my husband if there was something I should know about

dmplaura- I've found many of your posts very interesting. I've been sufferring with atypical TN going on 4 years now. For the first 2 years or so it only affected the left side of my tongue and was moreso a constant burning irritation- so for those first couple years I tried to ignore it, mainly because my dentist would shrug it off as burning mouth syndrome although he saw no visible signs of irritation. I'm wondering if you even have burning mouth, mainly because your case sounds so similiar to mine. After those first two years my burning pain began to rapidly spread throughout the left side of my face/head- from the tongue to the gums (especially where my wisdom teeth had been removed many years ago), to my canine tooth, eventually the entire inside of mouth, down my throat, then deep boring into my ear, than up the left side of my head into forehead and temple, just recently it has spread to my eye. Besides the intense deep burning, I feel an unrelenting pressure in my sinus cavities, especially in my ear and under my eye. I feel like I have a massive cold everyday-- I recently read that some physicans believe TN can begin from untreated sinus infections causing nerve damage...creepy stuff.

I also experience that metallic, iron-like taste at times. Multiple times it tasted like blood enough that I checked in the mirror for bleeding gums. As for smells I never really thought about it, but many times I complained of a very foul odor like mold or old vomit, sour milk perhaps. The weather also effects my TN as well, I can feel OK and step outside into the humidity and by the time I'm in my car it has flared up. Hell maybe I do have burning mouth but since they diagnosed me with aTN they've blamed that. Got MVD surgery in a month...scared ********.

Hugs to all who have contributed to this thread as of late! :grouphug:

I take Clonazepam still, plus Cesamet, and while this seems to keep the pain and attacks down, I still occasionally find myself laying the head down on something cold for a couple minutes, or applying pressure to a spot to stop the pulsing pain sensation (oddly, that works for me for relief sometimes).

Someone asked about EMG... I think that's what the test was called? I had pads stuck to points all over my jaw/head, and had to do movements with my mouth. Computer collected data, then specialist jotted down trigeminal neuralgia on my tick sheet (which actually had 12-13 different conditions listed from specialist's findings - wasn't a nice time in Laura's life to see all that, I had just turned 30 and my life hadn't even really started!). Add to that an MS diagnosis came a few months later which put a LOT into perspective and answered a lot of unknowns.

I hope everyone's been doing well and has been having lower pain or more pain free days :grouphug:

Atn
 

I'm a male in his 50s and I was diagnosed with a Chiari Malformation 11 years ago that turned symptomatic after a minor surgery requiring general anesthesia. Using evolved potentials and shocking my left wrist, the delay in transmission was noted right at the base of my neck where it is suspected the 5mm herniation should have told the God that operated on me to accept my prior films and use a flexible intubation. This has now progressed to a peripheral neuropathy for about 6 years. It's not too bad but I cannot possibly jog. I lose the spacial connection to my feet and begin to lumber along, for lack of a better word. In typing this message I am losing dexterity with my hands and making many typos by the end as my hands feel like they are floating over the keyboard. If I type for an hour I will want an ice bag for my hands to cool them and they will also ache as I have myofascial pain and Fibromyalgia.

About 5 years ago while eating I drank something cold and the lower left side of my jaw was introduced to what I believe is called Breakthrough Pain and my lower teeth on the left and my tongue felt life I had them in an electric socket. My neurologist is a top one and he diagnosed glossopharyngeal neuralgia and possible TN. He has since changed that to ATN.

A few months ago I started having episodes every 2-4 weeks of the entire right side of my face a little numb and flush. Not on fire, but from the neck, down the shoulder, through the teeth, up into the ear, around my forehead and into my eye socket. I had this previously a number of times but to a lesser degree on the left side.

I have also had episodes every few weeks of each quadrant of my teeth feeling for hours like I had a stabbing toothache with electrical sensations directly to the midline tooth. None of this though were like the few feelings of that Breakthrough Pain that would be unbearable.

I have had all MRIs done and all dental work checked. Also, with the Chiari malformation, even if they thought a MVD could do something I was told by a few neurosurgeons that they would not operate without a decompression first, and I am not a prime candidate, nor do I want the back of my head removed.

Does hitting all 4 quadrants (individually) in the mouth at times on a thankfully infrequent basis as well as having a constant discomfort/pain in my left ear sound like ATN, AFP, or both? I also have a vestibular deficit that is into the mildly abnormal zone on a rotary chair test along with downbeating nystagmus and some beating of my eyes when gazing to the far sides.

Thanks in advance,
Mike

Please help, I am trying to get relief and think I suffer from ATN
 

My story is a little long, but pertinent, I feel to help find if anyone else has had the same or similar symptoms and if my symptoms fall within the realm of ATN.

March 2013, I had a stabbing, horrible ear pain. I went to Urgent Care after hours because I couldn't take the pain any longer (about 2 weeks after the pain started). They diagnosed me with a bad ear infection and put me on antibiotics. 2 weeks later, the pain was the same, so I went back to the doctor; who put me on another 2 weeks of antibiotics (I'm highly allergic to most antibiotics, so this was particularly disturbing to me) and steroids. I was able to get in with my PCP, still with the same stabbing pain that had gone on for a month and a half by now. He also diagnosed me with an ear infection! I went to an ENT the next day...he said I never had an infection, that it was TMJ (I'm ****** by now, because I took a month of antibiotics, but that's another story).

Fast forward to Aug of 2014. I went to an Oral Surgeon under the advice from the ENT for the TMJ diagnosis for my ear pain. I had surgery on my jaw joint on 8/19/2014 for the ear pain- NOW THE PAIN IS WORSE! I am still recovering from the surgery and now the Oral Surgeon has referred me to a ENT that specializes in nerves of the ear, but I can't get in to see him until 9/26/2014.

I have since changed PCP (from last year) and walked into my new Primary's office last Friday begging for help. She gave me a prescription of pain pills, prednisone, and neurontin to help me get through until I can get in with, yet, another specialist. So you can understand that for 1.5 years, I have tried everything I could to get the pain under control...

It started out as a dull, constant, severe pain deep in my ear (I can't feel it by touch). I had the surgery for TMJ and now the pain in a shooting, stabbing (like a fork is stuck deep in my left ear), near constant pain deep in my ear. I have moments and sometimes a few hours without pain, even without taking any ant-inflammatory or Rx pain meds....but then I can feel it starting. Sometimes the stabbing, sharp pain is bearable and sometimes it will just get debilitating. I never know when it is going to happen, so I can't plan on doing anything (I won't drive on pain meds, and they seem to work for a few hours). I also don't want to get hooked on narcotic pain meds. I have tried Valium and that tends to help some, for a few hours. Nothing else seems to help. I suspect the prednisone (I just weaned off) and/or the nerontin may have helped a small bit, but really can't tell.

So, after many misdiagnosis and SURGERY, I am still in pain. The last 4 months has been close to breaking me down, physically, mentally and emotionally.

Does this sound like what anyone else has experienced with ATN? From what I have read, people suffering from TN can feel the pain to the touch. I don't have that. I just have sharp, electrifying, sometimes radiating pain coming from deep in my ear and can not determine if anything makes it better or worse.

Please, if this sounds like ATN, please let me know. I would rather educate myself and try and find a doctor to rule it in or out, so I don't have to keep jumping from one specialist to the next and HAVE SURGERY and still in pain...not to mention, I do have health insurance, but these bills are really going to start adding up-and I still have no relief.

Thank you in advance. I really hope I'm onto something; for a diagnosis would give me some hope.

Best Wishes,
Danielle

Welcome freeSpiritDanielle. :Wave-Hello:

Someone will be along to help.

Danielle, I am so sorry to read of the horrible pain and horrible experiences you have had. What a nightmare.

I have ATN that happened after dental work on the right side.

My symptoms are somewhat similar to yours. Much of my pain is in my right earl it feels like a huge hot potato is being shoved into my ear. I also have pain just outside of my ear, a little into the jaw area and behind the ear.

I often hear people with ATN complain of ear pain.

BTW, my ENT originally thought I had a TMJ problem. BUT, I had a TMJ problem on my left side and it was very different. I had a clicking sound and much less pain. To my shock, I called the TMJ assoc. And they said the less you do for TMJ, the better! Perhaps some muscle relaxers and an occasional neck massage...That's it!!!!

Back to ATN....your symptoms might very well be from ATN. Have you had an MRI? You really should see a neurologist. Lyrica, Neurontin and Elavil are all meds known to help with ATN.

I myself, rub a cream on my face. In the cream is Neurontin, lidocaine and capsaicin. I also take a med by mouth very similar to Elavil. This has been helpful, but I do have bad times....but less often.

If you haven't visited a neurologist yet, now is the time to try! And avoid surgery or any other drastic moves.

In the mean time, does a heating pad help a little? I usually got a little help by putting a heating pad on my face.

Please continue posting here, but also visit www.livingwithtn.org. Check out ATN and also Geniculate Neuralgia.

Fingers crossed that you get some pain relief soon!!!!