Do I really have TN? Or could it be something else? I have so many symptoms...but can I rule out anything else?

Welcome New Member Introductions
1

Hi all,

I am new to this...I only experienced severe pain around 2 weeks ago and it has been a nightmare trying to get a proper diagnoses...first it was a tooth infection (antibiotics obviously did nothing!) Then it was TMD (another doctor's opinion) and then it was a visit to the orthodontist, recommended by TMD doctor, who treated me like a 13 year old whinging about some pain from orthodontics...I tried to explain to all these 'doctors' that the pain was excruciating...like I'd been shot in the face!...that I had severe ear pain and sensitivity around the outside/surrounding anatomy of my ear...this is of course on top of the migraine headache and ridiculous jaw pain, as well as pain in the throat and sinuses.

I also explained that I had seen the dentist for a check up and a filling on the right bottom (my TN/pain is on the left) and that since then I had developed a migraine like, constant headache and a reeeaaaly sore neck. This was followed by a slow onset of my other symptoms as listed above, which then erupted overnight.

I ALSO explained that the pain is so bad that it is worse than when I had my 2 spinal surgeries...and I wasn't even on morphine as it makes me dreadfully ill. I cry from this pain...and my threshold is mega! I've had chronic back pain for over 10 years! Finally I went to a late night 'super clinic' (of all places) for an appointment at 11:30pm. He listened to a speech from me that it somewhat similar to that of the above, and said, yep I know what this is, TN. It wasn't until then that I actually realised that it was NERVE pain...of course! I have had severe nerve pain before in various regions involving my back and general bottom of the body area, but this nerve pain is waaaaaay worse...way, way, way worse! This doctor put me on lyrica and I had some relief within a few hours of mostly the migraine and cheekbone/sinus symptoms, and it did dull the aches and shoots of pain elsewhere. I'm only 5 days into treatment (saw my GP today and he upped my dosage) but so far I have not had heaps of success with the ear pain, throat pain and the ongoing pain in my jaw and cheek. It is definitely helping with the pain levels but they are still pretty bad...giving it time though, to adjust to the meds and such...

Sorry, I'm dragging on, I know...I'm still trying to make sense of all this.

I'm interested in thoughts or experiences with any of the cranial neuraligias triggered by dental treatment. I suspected a link when my symptoms started, of course, and there was also the fact that the filling she actually did was really high, so I had to grind away at it and just give it time and eventually it came good. I do have a history (and current) habit of clenching, grinding or just generally tapping or moving my teeth and jaw, but I've never experienced any other symptoms than clicking and popping, maybe a bit of stiffness, which is relieved by osteopathic treatment. I have also had niggling, sharp shooting and dull, aching pain in my left ear intermittently for a few years now...I have been to the doctors various times expecting to come out with a script for some magic eardrops, only to be told there is nothing wrong with me! I also had a strange onset of a really, really sore throat a few years back, which I put down to sleeping with my mouth open. However, the pain was so bad that I had to have 3 days off work...it felt like a full blown throat infection but there was no infection or evidence of irritation or anything. I had another 2 similar episodes probably with 6ish months of the first one.

I believe if I have TN and it is not any other factor (dental, TMD, etc) then I think I may have a couple of the cranial neuralgias...Trigeninal (jaw, cheek, migraines), Glosspharyngeal (throat, tongue, tonsil area), Geniculate-or Nervus Intermedius (ear)...IS THAT POSSIBLE? If so, could it be something serious that is affecting a large area...? Is anyone experiencing these 3 neuralgias at the same time?

Also, the inside of my cheek hurts...and when I push it out with my tongue it triggers an attack...anyone experience that? Also tilting head down towards chest causes pain in cheek/cheekbone area-as the blood rushes down...

Thanks for reading...you are a dedicated TN'er to have made it to the end...any help or stories would be appreciated :) (ps, I have started the process for booking an MRI-waiting on appointment advice...could it really be dental or something else, with all my symptoms? I do have a large filling in the last back molar on the left that can be sensitive and a bit temperamental...but if I had a full blown tooth infection under the filling that was affecting all of these nerves, wouldn't I know it? Wouldn't I have developed some sort of abscess or major swelling around that tooth? And wouldn't I have received some sort of relief from the antibiotics?...my pain got worse over the 5 days I took them!

Tree :)

2

Tree, PLEASE see a neurologist! (Sorry if you mentioned that you did, it was a lot to sort through). The way TN is diagnosed is to rule out everything else and see if certain meds give relief. For me, it was Tegretol. IMMEDIATE relief, though unfortunately after only a few months, the pain is beginning to sneak through again. But that does not always happen. You may be one of the lucky ones. And PLEASE, PLEASE, PLEASE continue with the MRI, but see a neurologist first so he can order the appropriate specifics.

3

Tree, After reading another of your posts, I would swear we are twins! lol I am also a musician, can no longer sing, have pain when i tilt forward, migraine-like constant headaches with sore neck, cheeckbone pain, sinus symptoms, also have high pain tolerance, but would rather deliver a baby with no meds than deal with this type of pain. I wanted to tell you, though that you may also want to find another dentist – one who will do a thorogh check of your bite. Your dentist never should have let you leave with a “high” filling.

4

Hi guys,

Thanks so much for the replies...I know it was an arduous task to read through all that!

Not being able to sing...Ohhhhhhh I know, it is THE WORST! I have a performance at the end of May and I've already missed 2 weeks (soon to be 3) of rehearsals...it really sucks. I do have my rare pain free (or relatively pain free) moments though...but I don't dare sing, even though I feel like I probably could, because I know that using my mouth, throat and jaw like that is going to trigger it! Maybe singing was one of the factors that led to my explosion?

I have the MRI referral from my GP which orders: 'Cerebral MRI with high-res views of left trigeminal nerve'

The notes state my jaw/facial pain for 2-3 weeks and state possible TN. Also states exclude other conditions, explore causes, etc.

I have sent the MRI form to the hospital and will need to wait a while to know when I'll have an appointment due to the Easter break-they said it will take 5 working days for someone to get back to me and book an appointment. In the meantime, I am going to the dentist (a different one!) to get another full check up. I want to find out whether that filling is still a little high, and also investigate the status of that large filling I have in the back molar. I have done some research and really the only way that I could be experiencing this pain (or some of it) in a dental capacity, is if the nerve was infected...or something like that. I expect if it was, I would have different symptoms, especially around the tooth site, but I want to make sure. Problem is, I don't know what to ask for...is an infection evident on an X-Ray? How do they assess the health of the tooth and nerve underneath the tooth?

Do you think I should see a neurologist before I have the MRI? Or do you know if what my GP has requested is adequate? I did mention to him about the high-resolution (as I'd read about it in my research), and I think that's the only reason he wrote it...? I mentioned also if he could list the Glossopharyngeal and he kinda brushed it off and said it'll all be looked at, or show up, or something like that. It seems to me, considering my wide range of symptoms, that I need a very thorough investigation of multiple nerves and areas...

I really need some help! Thanks for caring guys...I'm in Melbourne Australia and it's 3:15am here! I'm fuzzy as a bear, so I'm gonna hit the hay...I hope there are even more enlightened, helpful comments here when I wake tomorrow...

Peace, Tree :) <3

5

Hi tree. From my own experience i had a tooth infection,it was under the root i presume,and it was evident on xray.It was a black mark by root.I too have a right back molar with an issue,no decay or filling or infection but a pocket that collects bacteria. sometimes it hurts more,i go to dentist,it gets cleaned,but never infected 'yet'. The tooth will comne out eventually but its still strong apparently. Im having a slighlty calmer time (touch wood). i am booked in for a nerve block on 13th april. I have been like this for over a yr,so am hoping for this to go away ,or at the very least a remission (if that happens). You can get very good advice on here. best of luck

6



barbara said:

Hi tree. From my own experience i had a tooth infection,it was under the root i presume,and it was evident on xray.It was a black mark by root.I too have a right back molar with an issue,no decay or filling or infection but a pocket that collects bacteria. sometimes it hurts more,i go to dentist,it gets cleaned,but never infected 'yet'. The tooth will comne out eventually but its still strong apparently. Im having a slighlty calmer time (touch wood). i am booked in for a nerve block on 13th april. I have been like this for over a yr,so am hoping for this to go away ,or at the very least a remission (if that happens). You can get very good advice on here. best of luck

Have you considered getting it pulled and getting an implant? If you have health cover it may not cost that much just for one tooth.

I think if there was a problem with my tooth, I'd consider having it pulled and replaced with an implant, rather than going through an expensive root canal process that will probably ultimately fail in the end anyway...I am only 31...I got a looooot of chewing to do yet! BUT...if if do have TN AND and bad tooth, then I would probably need to consider 'phantom' pain...if I had the tooth pulled, the nerve may still recognise pain there, and it may also move over to the next tooth...

I am about to make a dentist appt for a general check up and an OPG. This will cost me a lot less than the MRI...if I can get the OPG before the MRI, I can at least then be informed about the health of ALL of my teeth, and consider whether I need the MRI...if action was taken on the affected tooth and my symptoms eased or ceased, then I would not need the MRI. This would be soooooo good! We will see...

Can you tell me what symptoms you had with the tooth infection that was identified by xray...was it just discovered in a routine check, or did you have pain, swelling, nerve pain, any symptoms? I'm glad you're having a reasonably calm time...I'm actually not having too bad of a day today...touch wood! I saw my Dr yesterday and he upped my dosage of lyrica to another 2 x 75mg tabs a day, and they are really tiding me over in between my 2 x 100mg doses.

Happy days and lots of hugging...but watch the face ok...only hugs on one side! :)

7

Hi Tree,

A few things popped out at me.

Medications like Lyrica take time to start working. They need to be titrated up slowly and take one to two weeks to build up each dosage. So I don't think immediate relief is possible. Having said that though TN can really wax and wane. Every day is different so it is possible to feel better for a few days before the next flare up begins. The pain can really change and move around too so it is always different.

It certainly is possible to have more then one type of neuralgia or have symptoms of more then one. I have bilateral ATN in all three branches on the left and the bottom two on the right. I also have symptoms of GPN and ON. All of these symptoms can overlap each other.

Do you mind me asking about your spinal problems? Where on your spine did you have trouble? If it was in your cervical spine I have some referral pain from that up my neck that is very painful and am honestly starting to wonder about a connection.

What migraine symptoms do you have??? Many of us have migraines and TN. I am just curious bc I have a lot of migraine symptoms and pain around my left eye.

There are many, many people here that started out in the dental chair. The link between TN and dental work is a hot debate around here. Dental nerve injury seems possible from a simple filling to RCs and implants. The debate is whether it causes an isolated nerve injury or actually sets off TN. I have been told that a nerve injury can only effect the branch it was performed on and that if you have TN in other locations that it cannot be related to the injury. I have no idea if that is true or not! I saw that you were commenting on the "don't treat dental injury" discussion. That is a good read with some useful info in it.

TN can also come on very slowly and then freak out. I first had ATN when I was 29. I then had a seven year remission and it came back two years ago and is way, way worse. But looking back I had all kinds of tiny little sensations over the years that was my TN. I just didn't know it at the time. TN is progressive so it can start off mild or have tiny flare ups with long periods of remission in between and over time the flare ups get closer together and stronger in intensity.

It sounds like you are on the right track. You do need a neuro asap. And not just any neuro. You need one that understands TN. It can be very difficult to receive proper help with this and you are lucky that it has been caught quickly--if it is TN. And an MRI is not really used to diagnose TN or GN etc. It is used to rule things out. That is why you really need a knowledgeable DR. Diagnosis is mostly on history and symptoms.

Often times I find these forums more helpful then most DRs! Ask anything, learn as much as you can and don't stop until you get answers.

8

I would like to add something about the possibility of immediate relief from medication. While I'm sure some meds do take time to build up in your system, one of the ways that neurologists diagnose TN is it's reaction to carbamazapine (Tegretol). The better the response, the more sure they are of a TN diagnosis. mine was IMMEDIATE. I had suffered for years and had relief within the first 2 HOURS of my very first dose! It can happen -- and it can also unfortunately become less effective over time

I do wonder what the migraine connection is. My MRI showed white spot in the brain that my neurologist attributed to many years of migraines, only i NEVER HAD migraines -- at least not that I know of. Now I am exploring the idea that maybe I did and because they were not the classic kind, I never realized it. There sure is a strong connection with people on this site, though. Must be some connection. Please feel free to comment if you have info on this.

9

Interesting that your relief was immediate. I didn't know that could happen.

I get a lot of symptoms around my left eye. My neuro diagnosed me with migraines as well as bilateral ATN in all three branches. The symptoms of the two seem to overlap so much that I don't know which I have--or both.

These are my symptoms. Tingling and burning on temple, over eye and up onto head, feeling like something is in my eye, tearing and swelling in that one eye and runny nose on that side, severe stabbing pain down through my eye for hours at a time, nausea, dizziness, aura and also severe light sensitivity.

It took me a few months to figure out that the light sensitivity will actually bring on a migraine for me. I sit in front of a big window at work. Suddenly I was wearing my sun glasses all the time. I found I was getting migraines more at work so I had a blind installed and you know what? I haven't had a full blown attack ( of whatever it is ) since then.

I am reading an interesting book right now about migraines called "The Migraine Brain" by Carolyn Bernstein. A lot of what she attributes to migraine sound like TN. It is all very confusing.

I am on Nortriptyline for ATN and it has been very helpful for that but it obviously doesn't touch the eye pain. A lot of people have success with Triptans for migraines. I can't take that bc I have high blood pressure.

Wondering what sort of symptoms other people get with their migraines?

wadams said:

I would like to add something about the possibility of immediate relief from medication. While I'm sure some meds do take time to build up in your system, one of the ways that neurologists diagnose TN is it's reaction to carbamazapine (Tegretol). The better the response, the more sure they are of a TN diagnosis. mine was IMMEDIATE. I had suffered for years and had relief within the first 2 HOURS of my very first dose! It can happen -- and it can also unfortunately become less effective over time

I do wonder what the migraine connection is. My MRI showed white spot in the brain that my neurologist attributed to many years of migraines, only i NEVER HAD migraines -- at least not that I know of. Now I am exploring the idea that maybe I did and because they were not the classic kind, I never realized it. There sure is a strong connection with people on this site, though. Must be some connection. Please feel free to comment if you have info on this.

10



justjane37 said:

Interesting that your relief was immediate. I didn't know that could happen.

I get a lot of symptoms around my left eye. My neuro diagnosed me with migraines as well as bilateral ATN in all three branches. The symptoms of the two seem to overlap so much that I don't know which I have--or both.

These are my symptoms. Tingling and burning on temple, over eye and up onto head, feeling like something is in my eye, tearing and swelling in that one eye and runny nose on that side, severe stabbing pain down through my eye for hours at a time, nausea, dizziness, aura and also severe light sensitivity.

It took me a few months to figure out that the light sensitivity will actually bring on a migraine for me. I sit in front of a big window at work. Suddenly I was wearing my sun glasses all the time. I found I was getting migraines more at work so I had a blind installed and you know what? I haven't had a full blown attack ( of whatever it is ) since then.

I am reading an interesting book right now about migraines called "The Migraine Brain" by Carolyn Bernstein. A lot of what she attributes to migraine sound like TN. It is all very confusing.

I am on Nortriptyline for ATN and it has been very helpful for that but it obviously doesn't touch the eye pain. A lot of people have success with Triptans for migraines. I can't take that bc I have high blood pressure.

Wondering what sort of symptoms other people get with their migraines?

wadams said:

I would like to add something about the possibility of immediate relief from medication. While I'm sure some meds do take time to build up in your system, one of the ways that neurologists diagnose TN is it's reaction to carbamazapine (Tegretol). The better the response, the more sure they are of a TN diagnosis. mine was IMMEDIATE. I had suffered for years and had relief within the first 2 HOURS of my very first dose! It can happen -- and it can also unfortunately become less effective over time

I do wonder what the migraine connection is. My MRI showed white spot in the brain that my neurologist attributed to many years of migraines, only i NEVER HAD migraines -- at least not that I know of. Now I am exploring the idea that maybe I did and because they were not the classic kind, I never realized it. There sure is a strong connection with people on this site, though. Must be some connection. Please feel free to comment if you have info on this.

11

Wow! the more I reead stories like yours the more I wonder how much of mine is migraine related. While bright lights don't set me off, I do not like light. My husband fusses because I only have a few lamps on in the house and he stumbles over things! Thanks for the info!!

12

Sorry guys, I can't really comment on the migraine side of things...mine went away shortly after I took my first dosage of medication, and to be honest, I can't remember much about how it felt beforehand. All I know is that I went to the dentist, came out with a high filling and sensitive back left molar-one with a large filling, and this was followed by severe neck pain and tension and a migraine that could slowly kill a small elephant...just niggling away at me. I actually said to my Mum ;I feel like I've got a freaking brain tumor', whist updating her on my health...I think that was about a week in...by that stage I was in agony. I can't remember if it was just on one side...I think I had so much else going on with my face, neck, jaw, teeth; I kinda just felt a not-so-dull ache that was constant in my head...like it was going to explode! I explained to my mother that it felt like I had a migraine, sinus infection, throat infection, ear infection, cold and flu (light sensitivity, etc), and as if I'd been shot in the left side of my face!

I hope all out there with migraines are doing well tonight...they are a terrible burden and it takes real strength to get through this pain stuff...

Peace, Tree :)

Ps: I would be interested to hear from people that have had ALL or MOST of the symptoms of the main cranial nerves, as I have...

13

Hi wadams and justjane37 - I have a question about diagnosis from response to medications. Wouldn’t tegretol also work to relieve nerve pain related to an infected tooth? I’ve always been confused about that and my neurosurgeon could not give a definitive answer.

I, too, have tons of dental issues and the pain seems completely localized to a small area on my lower right side where I have two back molars with root canals and crowns (one has a weird shadow at the bottom and the post is a terrible fit–looks like it could be piercing through the side of the canal) and one first molar with a huge crown from a big old cavity where the filling came out. This is three teeth in a row and I don’t have any typical responses to the tests edodontists do to determine tooth infection. And of course they can’t see much in the X-rays because of the crowns.

Sorry for the novel, but I’m trying to better understand why these medications would work on one type of nerve pain and not another (ie infected tooth nerve pain). Thanks in advance for any info/insight you can provide!



wadams said:

I would like to add something about the possibility of immediate relief from medication. While I'm sure some meds do take time to build up in your system, one of the ways that neurologists diagnose TN is it's reaction to carbamazapine (Tegretol). The better the response, the more sure they are of a TN diagnosis. mine was IMMEDIATE. I had suffered for years and had relief within the first 2 HOURS of my very first dose! It can happen -- and it can also unfortunately become less effective over time

I do wonder what the migraine connection is. My MRI showed white spot in the brain that my neurologist attributed to many years of migraines, only i NEVER HAD migraines -- at least not that I know of. Now I am exploring the idea that maybe I did and because they were not the classic kind, I never realized it. There sure is a strong connection with people on this site, though. Must be some connection. Please feel free to comment if you have info on this.

14

Hi Tree, I am really new to this and I am just as confused. I have toothpain that is controlled with TN medicines most of the time and ear pain on one side that is really deep and spasms in front of the ear. My neck gets very stiff before an attack and I get migraines that make me sick to my stomach from low vibrating noises like the printer at work. I am on here today wondering if I should get a surgery? I want my old life back (I think) for career and family purposes. I keep questioning whether I even have TN. My symptoms are weird and don't fit the mold. I went from dentist (no dental problem) to urgent care ( diagnosed with ear infection) no infection to Emergency room diagnosed with TN. Two Neurologists concur. I just don't buy it and I am driving my boyfriend crazy to the point he won't let me say anything but I have TN. I still don't know the medicine helps a lot but the ear pain is not under control and my neck hurts and gets stiff all the time. Let me know if you get a different diagnoses. Oh yeah and I have had two MRIs and one was very high resolution no trace of a vessel hitting a nerve. I really want to know what is wrong with me if it is not TN. Yours has sounded the closest to my condition yet.

15

Hi Tree,

Wow, I'm so sorry that you are dealing with so much. I have had TN facial pain from dental surgery for 30 years. At first I just had attacks that lasted 4 - 6 weeks or so but over time they started to go on longer and get worse. Long story short, when I am at my worst, my neck gets sore and tender to the touch, my ear hurts, my face feels like it is going to explode! I get the dull, constant pain that is unrelenting. I also get terrible migraines.

I had problems with many of the medications used for TN so I was also put on Lyrica. It caused me to gain a lot of weight and you need to keep a close eye on swelling in your ankles. I then started seeing a new pain specialist and he put me on Topamax. However, the combination was too exhausting for me and I was starting to fall asleep driving. I had already been put on short acting and long acting narcotics at that point just in an effort to function and be able to work. So, we dropped the Lyrica. I did find that the Topamax was just as effective for me as the Lyrica, the combination worked the best. I'm now back to the combination. I just don't drive a lot anymore and have finally filed for disability. Keep in mind, I'm over 30 years out with this and also have other health issues; connective tissue disease for one (in my case, similar to Lupus).

So, in my experience, I have found that my neck and ear on my TN side can hurt, although no doctor has ever explained the neck tenderness to me.

Get a neurologist with knowledge of TN! This is important. If you have not done so already, have that MRI ready for him/her. If you find that they don't listen to you, move onto another neuro. It took me four and I was actually diagnosed by my pain specialist and then found a new neuro to confirm it.

Good Luck, you have a great group here and you will get through this!

Cathy In MD

16

Recently, once the ice picks eased up, I noticed my throat was sore and my neck is and has been prone to discomfort. These structures are proximal to the lightening zone and when things get rock and rolling, it is impossible not to brace yourself for the next onslaught (or not - equally as stressful).

Referral pain is something to consider as well as trigger points (look up Dr. Janet Travell) of which the face and neck hold many. Pressure on these points either from an outside source or via inflammation and / or dense tight tissue can ‘trigger’ pain in other regions, often sharp, shooting pain!

The good news is, palpation with ischemic compression to tolerant trigger points can relieve tension in satellite trigger points.

Reflexology might be an avenue to pursue - fighting fire with fire.

17

Oh my goodness I do understand. When my pain began I thought I might die of the all round all consuming pain. Mine began after a dreadful virus caused bells palsy. As a residual effect I was left with an eye muscle spam and a couple of weeks later hideous episodes of pain which I took to be some type of migrane. Diagnosis is complex as its a post viral neuralgia I have. Symptoms have changed over the years. I've suffered for around 4 years now. My attacks are more typical of tn1 pain now but its been called atypical until now. I don't care what its called it hurts and has turned my life upside down! Life was simple and good before now its hard a lot of the time. Don't give up searching for some answers and push your doctors to take this seriously and help relieve your symptoms. You aren't going mad!!!

Love Helen x

18

Alongside the TN diagnosis, while you're looking at causes, a CT scan or panoramic X-ray might be an idea, as some of your symptoms also sound similar to those of Eagles Syndrome- where there are elongated styloid processes or calcified ligaments. Having glossopharyngeal pain and ear pain is also very common; ES is listed as a possible cause for TN, GPN and GN. ES is very rare, but while you're trying to get to the bottom of it, it is something to consider. (Ben's Friends has a site for Eagles Syndrome so you could have a look there if you want more info)