Need advice! please?

General General TN & GPN (Old Site)
21

Although I missed out on the point of of story about the doctor due to the edit...what you said about the boy dancing really warmed my heart. That is amazing! How strong must he have been to be able to do that! It makes me feel kind of silly for letting this take over my life the way it has. Maybe i needed that [= The fact that you've dealt with it for this long really gives me hope too! You must be a VERY strong person yourself. You have been through sooo much! I really admire your strength. I need to be more like that. This has made me feel sooo weak and useless. But thats only because I'm letting it. Thank you for sharing your story with me...it means more than you could imagine!

Will Newton said:

Hey Bri,

I hope you're all right and not too worried. Just to put a few things in perspective, I'm your age, I was 22 on wednesday, and I've had ATN since I was 17. I may have some other neurological problems too, but I definitely don't have MS.

Also, as I'm not the sort of guy that complains about problems, I only ever go to the doctor whenever I have a list of about 10 problems! To boot, I have had cancer before and so whenever I mention something, a bump, a pain, of which I have a lot (I'm quite active, daring and don't take much care of myself so I'm often getting scraped and bruised etc), my mum will pretty much freak out! For this reason she makes me promise to mention every little thing to the doctor (which is fair, after all, I did have cancer!). I used to feel quite embarrassed mentioning so many things to the doctor, as if I were some sort of hypochondriac and have often been told by the GP "you only have a 10 minute slot", but I've come to realise most of them are out there to help, as much as earn a living. They want to be there for us and help us through a situation. On top of this, being honest can really help a situation, giving all the information can turn one serious misdiagnosis to quite a normal problem. I once mustered up the courage to say that I'd even (Edited by moderator)and immediately the doctor had a cheeky smile and lost the worry in his look and said "you'll be fine by the end of the day!", God knows what he thought my symptoms were from!!

I hope you're all right and that the worry's not too much. However bad things get there's always hope and things do get better. Not to mention I've learnt to appreciate every second where I'm not in pain or being looked after by friends that care! One of the most emotional moments in my life was seeing a kid from my school, who'd been wheelchairbound for as long as I could remember with MS, get wheeled onto a club dance floor on the last day of school. I felt a little sorry for him, but you couldn't believe what went through my head when the guy got up and danced! I'd never seen him stand up before, let alone dance and I'm pretty sure he's walking around quite freely now. What a night!

Love, Will

22

Thank you! I have actually been thinking about alternative therapies. But, I'm gonna try to take one step at a time. I would have to exhaust all other options before I would agree to any kind of surgery. I have read about some people getting relief from chiropractics and acupuncture..so I would definitely be willing to try...because unlike surgery...It can't do any more damage!

Muffet said:

Hi Bribri I would tell the Dr everything, there may not be a connection between it all, but Dr need all the help they can get to make the right diagnosis. I would check out the simple too, like It could simple be a problem with your veterbre being out of place, what do you know about chiropractors.....there some good ones out there. Good of good courage Muffet
23

The doctor still has NO idea what the cause is.

It might be a viral something or not.

They are also considering a transfer to UCSF specialists.

I am actually having a good day, and I have been having some relief to not just the headache, but also the burning in my legs, and the numbness in my hand and bladder problems so yeah!

Have you started tegretol yet? They upped mine to 800 mg a day

Don't stress (or try not to). I found that the more stress the more triggers to my headaches. I have taken to watching The Real Housewives of New Jersey for some laughs. I am a political junkie, but I can't
handle the stress any longer!


BriBri1016 said:

I'm interested in this Stephanie! Can you recall what they said may have caused it exactly? I'm glad that it was not MS though! Thats great news. I just hope you get to feeling better! And thank you!

Stephanie Rudin said:

Not to try and get your hopes up, but my MRI showed no lesions, and hey have ruled out MS.

I feel relieved knowing what it is NOT.

My doctor felt that my pain was caused by either a virus or something else that I can't remember (thank goodness for husbands and family members who go to appointments).

Good Luck!

24

Hey Bri! I hope you are hanging in there! I know how hard it is to have to wait and think... and think... and google things... and thinks some more. When I read what you write I feel like I am reading somthing that I wrote! you are not alone with the teeth thing, I have been dealing with my teeth troubles my whole life, and I as well feel like that is where my pain starts and ends (along with my eye) I actually do have to have a lot of work done (sometime soon I'm getting 5 teeth pulled on top and all pulled on the bottoms and im getting implants) I lived with this face pain for a while thinking that it was infections in my teeth and that it was just spreading. the dentist told me there was nothing wrong with the teeth that I am complaning about. he made me feel CRAZY like, can I be making this up? I questioned my own sanity all the time just like what you are doing. but i want to let you know that your pain is very REAL what you are going thru is REAL and you are far from crazy it would be crazy not to be worried about why you are in pain. My husband would try to get me to stop researching things and I would tell him that i am being pro-active, "I can't just sit around and wait, I just can't, this is my way of activly feeling like I am working towards solving this thing" - thats what i would tell him, and thats what you are doing too. but like I said if YOU know that you are over doing it then just come on here and talk to people or do somthing to try and get your mind off of it. I wanted to also share with you: the day I went to the first neroligist he was not very careing, kinda condisending and when he told me that I had "Atypical Trigeminal Neuralga or some sort of facial neuralga" and, "you can start taking Gabipantin and see if that helps". I started crying, I was so upset because I went in there thinking that he had a way to fix me, I was looking forward to that appointment for weeks and thats it? we are just going to guess and check? "see if this works" I WANTED HIM TO FIX ME! even two days later the Gabapentin helped ALOT and I was greatful for that, but I did end up finding another doctor that was easier to talked to and who I felt listend to me... anyway I am trying to say that he may not have a "quick fix" for you, but I am hopefull that you will have some relief like me. I am learning that it is just about finding the right treatment for you. I hate to hear that you are suffering. Just keep praying and staying strong you are going to fight your way through this because you are a very STRONG woman and also you have helped me ALOT by being so open and reaching out for answers. Thank you. -Sarah ♥

25

Haha, the edit. I'll be more careful about what I mention! The point was just that as I'd over done it in drinking and so on, my symptoms were just a very heavy hangover, not something much worse that he thought I had, so mentioning something I usually wouldn't mention (having a very heavy night on the tiles for instance) saved us both a lot of worry!

I'm glad to see so many people sharing and caring and just generally helping each other. It's really touched me to see how strong people are as this is not an easy thing to deal with. It really puts things in perspective. Keep it up Bri! You're doing well, just remember that. You've come here, found people who really care and support you and although you are worrying yourself, which is more than understandable, you're not going mental! Sometimes looking things up calms me down, but I'm always sure to not let it get to me and for me not to self diagnose. It's incredible how reading up on symptoms can make you think you have it! You won't believe some of the stuff I've thought I had over the years!

One thing I've noticed is don't expect that quick fix, as many people will tell you this is all a long process. I've learnt to just be pretty relaxed and let the doc help me find something. As much as we feel we're not being listened to or ignored, and while that can often be the case (sometimes I just think doctors have lost sight of why they became a doctor), they are there for us and it can be quite frustrating for them. They know that they don't have the answer and all they can do is "see if it works". It can't be easy trying to find the cure to something that's just so hit and miss and having to basically say "It's still going to hurt and there's not much we can do..." Just remember that there're things out there and people do get a lot of relief. There is help out there, but it's not so quick. I don't want to bring you down. I simply put up with my ATN until about 2 months ago, thinking that there wasn't anything out there (as I'm quite the pessimist), so I never really bothered. Took the pain when it flared up, and did as much as I could when it wasn't there! Quite a pointless move as now I've had about 1 month of virtually no pain and I was only on a low dose of Prozac! So there is stuff out there, and it can be quite the relief.

I hope you're feeling better! As with everyone else here. On my end I'm keeping quite well, I just had a very fun trip to Valencia and I'm back in Madrid now. Off to Barcelona on Tuesday, can't wait!! On a bit of a downer I've run out of my prozac and can't get any more for a few weeks! The pain was slowly coming back anyway but it's going to rocket in the next few days. Ah well, better keep busy and do as much as I can till then!

Hope you're all well!

Will

26

Hello everybody, I had an incredibly interesting appointment last week. I went to an Osteopath who works with his dentist father in the same office. He was thorough very thorough, he looked at my posture, my spinal column then the way my teeth function together. Feeling the muscles in my face while I was clenching, checking how mobile my craniale plates are, watching my teeth slide to the side many times and how they touch…and here is what he said. I hit harder on the left side, it is barely a difference but, according to him this difference makes the muscles on the right side of my face work ever that much more to close the right side , this is the side that I have ATN. My crainal plates are rigid far more than they should be so there is obviously lots of muscular tension in my face!!! The muscular tension is quite possibily the cause of the neuralgia, the pain in my right shoulder and the stabbing bit in my right pectoral muscle. I am so excited, if you google osteopath and dentist you may find some interesting articles, many of our physical problems are caused by unbalanced occlusion and neuralgia is a common problem in the list. The Osteopath proposed an appointment with both he and his father dentist, he will first relax all of my face muscles, then I go to the dentist for equilibration of my bite, you may remember that this is the second time in a month that I am having this done, the first time it was my boss dentist, but he did it will my muscles in their malfunctional tension…it seems the result is never optimal
So how many of you clench or grind your teeth? This is not the only sign of malocclusion and it is possible to do this and not be aware of it…headaches upon awakening are a good sign that you do it, neuralgia too… 80% of woman do this, more than men and interestingly enough 80% of TN patients are women…could the cause be so simple??? I pray that it is. Muffet

27

Hey Muffet,

That's a really interesting appointment! It's strange because I had precisely the opposite thought and thus came to the exact opposite conclusion, though it'd be interesting to see how it goes for you and so on.

I have very weak teeth due to the fact that I have broken most of them before and have no enamel to boot. For this reason I got really worried that I was going to whither away my teeth due to clenching as my teeth chip off virtually nothing. For this reason I recently went to the Dentist. He knows me really well as I've been going to him since I was born and he genuinely takes an interest in me and cares as he's been through it all with me. He's also the guy who told me I had ATN so I trust him whenever he tells me I have to do something or not.

Anyway I told him about how I was worried that I was damaging my teeth and on top of that that my jaw was locking due to the movements that I did when the pain was so strong. He went through it, taught me how not to lock my jaw and then to try and do other things other than clench. This said, as I wasn't grinding, the clenching wasn't too much of a problem other than straining the muscle. Since then I've been a lot better, but my neuralgia hasn't gone. It went for a while as I'd started on meds but it's come back now and will be getting worse by the day. Now that you mention it though I've started clenching more, as my ATN's getting worse again, but I always saw it as ATN first, then the clenching.

I always thought that Chemotherapy had caused my ATN. Whilst it is true that the ATN started a couple weeks into Chemotherapy, it could be due to the clenching. My Chemotherapy treatment was apparently one of the most paingul and to add to that, I used to have them pump me as quick as it would go, causing a great more deal of pain for an hour at a time For this reason I'm very sure that I would've clenched. It was awful!! Maybe that's why my ATN came at that point?

It's an interesting point you've brought up and it'll be interesting to look at it further!

Will

Muffet said:

Hello everybody, I had an incredibly interesting appointment last week. I went to an Osteopath who works with his dentist father in the same office. He was thorough very thorough, he looked at my posture, my spinal column then the way my teeth function together. Feeling the muscles in my face while I was clenching, checking how mobile my craniale plates are, watching my teeth slide to the side many times and how they touch.....and here is what he said. I hit harder on the left side, it is barely a difference but, according to him this difference makes the muscles on the right side of my face work ever that much more to close the right side , this is the side that I have ATN. My crainal plates are rigid far more than they should be so there is obviously lots of muscular tension in my face!!! The muscular tension is quite possibily the cause of the neuralgia, the pain in my right shoulder and the stabbing bit in my right pectoral muscle. I am so excited, if you google osteopath and dentist you may find some interesting articles, many of our physical problems are caused by unbalanced occlusion and neuralgia is a common problem in the list. The Osteopath proposed an appointment with both he and his father dentist, he will first relax all of my face muscles, then I go to the dentist for equilibration of my bite, you may remember that this is the second time in a month that I am having this done, the first time it was my boss dentist, but he did it will my muscles in their malfunctional tension...it seems the result is never optimal
So how many of you clench or grind your teeth? This is not the only sign of malocclusion and it is possible to do this and not be aware of it....headaches upon awakening are a good sign that you do it, neuralgia too..... 80% of woman do this, more than men and interestingly enough 80% of TN patients are women.....could the cause be so simple??? I pray that it is. Muffet
28

Hi Will, thanks for your imput,

Here is another aspect that the osteopath talked about … “vertical dimension”. This is a measurement that is taken twice in the face, inferior and superior. Inferior is measured from nasel end of nose to bottom of chin with mouth closed and superior is measured from upper lip to middle of the eye with mouth open and looking straight ahead. It seems that these two measurements should match up, mine don’t, I am missing 4 millimeters on the inferior measurement, which causes muscle tension too!!! If what you say about your teeth being weak and breaking off and wearing down then you too may have an inferior vertical dimension that is lacking. Clenching certainly causes weak teeth, and children clench too, it is not limited to adults. Clenchg can lead eventually to the diminished inferior measurement …I am looking so forward to my appt on Thursday I feel like this is truly the answer. But one really needs someone in the know to be able to remedy it. If for example you have lost vertical dimension then there is the possibility of wearing a night guard, it seems that it should be worn on the lower teeth as to not block the craniale plates. And the guard can be worn even during the day if manageable. But it too, needs to be finely tuned as to not stress out muscles. Makes sense to me all this, nerves do not go haywire for nothing there must be irritation somewhere. Muffet

29

I completely agree with you! I have been coming to that conclusion myself. I was complaining about my bite feeling off around the time this all began. But, since my pain didn't fit into the typical symptom list with bruxism (clenching in my case) or with TMD symptoms it just became very confusing. The weirdest part is that now my bite seems better but all i had done was some extractions and fillings....nothing to actually correct my bite. The dentist never told me if she thought i did have TMJ disorder or bruxism....so I just don't know. Also worth noting...I used to only chew on this side for fear of breaking a tooth on the other side. I'm praying that they'll give me something to calm the crazy nerves down long enough to get my partial...then maybe that would even things out enough so that I can try to get the muscles and the nerves back to normal. I guess its my own little theory...or maybe just hopeful thinking. I'm not going to diagnose myself...I'll just try to figure out how to say all this to the neurologist and see what she thinks about it.

30

I really love hearing from you...I read your comment to my aunt and mom and they both got teary eyed with me! As the appointment gets closer I keep trying to un-diagnose myself. lol. I think I'm good now...as long as i get my thoughts organized before I go that is. You have helped me a lot through this whole ordeal. Thank you so much! I'm managing the pain a lot better than I was (thank God!!!) I will let you all know what happens at the appointment if Friday ever gets here! Please keep me updated on how you're doing as well!

Sarah♥ said:

Hey Bri! I hope you are hanging in there! I know how hard it is to have to wait and think... and think... and google things... and thinks some more. When I read what you write I feel like I am reading somthing that I wrote! you are not alone with the teeth thing, I have been dealing with my teeth troubles my whole life, and I as well feel like that is where my pain starts and ends (along with my eye) I actually do have to have a lot of work done (sometime soon I'm getting 5 teeth pulled on top and all pulled on the bottoms and im getting implants) I lived with this face pain for a while thinking that it was infections in my teeth and that it was just spreading. the dentist told me there was nothing wrong with the teeth that I am complaning about. he made me feel CRAZY like, can I be making this up? I questioned my own sanity all the time just like what you are doing. but i want to let you know that your pain is very REAL what you are going thru is REAL and you are far from crazy it would be crazy not to be worried about why you are in pain. My husband would try to get me to stop researching things and I would tell him that i am being pro-active, "I can't just sit around and wait, I just can't, this is my way of activly feeling like I am working towards solving this thing" - thats what i would tell him, and thats what you are doing too. but like I said if YOU know that you are over doing it then just come on here and talk to people or do somthing to try and get your mind off of it. I wanted to also share with you: the day I went to the first neroligist he was not very careing, kinda condisending and when he told me that I had "Atypical Trigeminal Neuralga or some sort of facial neuralga" and, "you can start taking Gabipantin and see if that helps". I started crying, I was so upset because I went in there thinking that he had a way to fix me, I was looking forward to that appointment for weeks and thats it? we are just going to guess and check? "see if this works" I WANTED HIM TO FIX ME! even two days later the Gabapentin helped ALOT and I was greatful for that, but I did end up finding another doctor that was easier to talked to and who I felt listend to me... anyway I am trying to say that he may not have a "quick fix" for you, but I am hopefull that you will have some relief like me. I am learning that it is just about finding the right treatment for you. I hate to hear that you are suffering. Just keep praying and staying strong you are going to fight your way through this because you are a very STRONG woman and also you have helped me ALOT by being so open and reaching out for answers. Thank you. -Sarah ♥

31

Muffet, may I enter one note of strong reservation, please? There is not one blessed thing that ANYBODY can do about the relative sizes or measurements of bones in the face, short of re-building you from the ground up. And clenching does not alter the actual dimensions of bones in the skull, though in extreme cases clenching can cause TMJ problems by putting pressure on the joint.

A seriously large number of cases of TN are misdiagnosed as bite problems or TMJ by dentists who sometimes fail to recognize their own financial self-interest in treating these disorders. So I would urge you to do some homework on medical literature, to satisfy yourself that the advice you're getting is founded on sound physiology.

Regards and best,

Red

32

This is just a random thought....I try to make sure that I relax my face because I feel like my muscles are just getting ABUSED by all this pain..but it seems like if I relax my face....the nerves just take that as an invitation to have a big ol' party inside there. Does that even make any sense???

33

Yes it does, Bri. I feel like at the end of the day my face is exhausted... I think its from smiling. I don't like laughin because it hurts. So what I have practicing doing lately is laughing with my mouth closed. NOT an easy task. I assure you!!! Ha, Min

34

Red, Thank your for your concern....I am well aware that practically all the medical literature says there is no explanation for TN, that it is progressive and gets worse with age, most of us will end up with neurosurgery. I am in the dental profession, I am a dental Hygieniste. If I am looking for an explanation to my pain, it is my own initiative....But I am professionally convinced that occlusion plays an extremely important role in cervical veterbre problems, posture, sciatique...why not TN , and it could be that I am completely off base, I know that my bite is unbalanced, I had orthodontics at the time when it was thought more esthetic to square off the canines. That is the worst possible thing those orthodontist could have done to me! with no canine protection the clenching and grinding began and at age 49, I broke an upper left molar through clenching....there was a crown put in around 7 years ago that was too big, I ended up breaking off a piece of it. I have neuralgia on the right side that corresponds to the extra work the muscles have to close the right side. My right shoulder bothers me and another point in my pectoral muscle bothers me....I hope this equilibrating will alleviate my neuralgia, it may not but I have to exhaust all possibilities. We swallow 1500 times a day which puts 50kg/cm2 of pressure on our teeth each time....Clenching puts up to 150kg for a more extended timel. None of the professionals that I deal with tell me that this will help. The first neurologist said you can try whatever you want but don't spend too much money......my first remission followed a chiropractor appointment where he pulled on my ears and the tiny little bones on the right side made a little popping sound and from that moment on I no longer had pain....., I actually felt the difference in my inner ear. This time I was especially stressed out toward Christmas and TN begins, like it has in the past during stressful periods.....Why does it spark when we use the muscles of mastication, or facial.....everybody who has this speaks of pain eating, smiling....there has to be a link and even if I am wrong I am sure that my neck is going to feel better after my appt with the osteopath dentist combination. I will keep you posted. Muffet
Richard A. "Red" Lawhern said:

Muffet, may I enter one note of strong reservation, please? There is not one blessed thing that ANYBODY can do about the relative sizes or measurements of bones in the face, short of re-building you from the ground up. And clenching does not alter the actual dimensions of bones in the skull, though in extreme cases clenching can cause TMJ problems by putting pressure on the joint.

A seriously large number of cases of TN are misdiagnosed as bite problems or TMJ by dentists who sometimes fail to recognize their own financial self-interest in treating these disorders. So I would urge you to do some homework on medical literature, to satisfy yourself that the advice you're getting is founded on sound physiology.

Regards and best,

Red

35

a little update: i have developed these horrible muscle spasms on the same side as my TN symptoms. It was really scary because I have some clicking sounds with it (I thought for sure the bones in my face were breaking!) . I looked it up and it sounds like it may be something called myoclonus or palatial myclonus....which is also caused by an artery or something rubbing against the nerve in most cases. Just another reason to worry that there might be some larger cause for all this. =[ At this rate...I'll have a VERY longggg list of symptoms for the neurologist by the time Friday gets here.

36

Hey Bri,

Whatever you do, keep calm! The more you have, the better. Everything'll become clearer and your neurologist'll be more likely to diagnose and help you.

What sort of clicking sounds? I get them all the time in the jaw around where the pain is and I've had them for a long time now. Sometimes I think I'm developing arthritis or something, however it's all fine (obviously I have ATN but I doubt I have anything more serious). Does your jaw ever lock? I had this problem as well, on the side I have the ATN and I went to the dentist to ask him about it. He explained to be that if you open your mouth wide and push your jaw forward it can lock, as the jaw pops out of it's connection it can lock and also clicks as it pops back in. I can't explain it properly but it was pretty simple, nothing to be too worried about. What is was was that when the pain was pretty strong, especially if I yawned, that's exactly what I did and it'd lock and/or click a lot as I couldn't close my mouth due to the pain, just open it more.

He just told me that when I do that, to keep the jaw in, as in not overbite when I open the jaw. The locking's stopped completely now and the clicking has reduced a lot (although this will have a lot to do as I've been on meds, which I'm now stopping so we'll see how it gets).

I hope you're all right! Keep it up! You're doing well and just stay strong. I really do suggest not looking these things up, trying to put names to it. I like to just sit back and not think about it. It makes it less scary and I don't have to consider what it'll be like in the future. You're doing well and some questions will be answered on Friday, but for now, know that people are there for you and maybe use it as an excuse to have your fiancé take you out and pamper you like you deserve!



BriBri1016 said:

a little update: i have developed these horrible muscle spasms on the same side as my TN symptoms. It was really scary because I have some clicking sounds with it (I thought for sure the bones in my face were breaking!) . I looked it up and it sounds like it may be something called myoclonus or palatial myclonus....which is also caused by an artery or something rubbing against the nerve in most cases. Just another reason to worry that there might be some larger cause for all this. =[ At this rate...I'll have a VERY longggg list of symptoms for the neurologist by the time Friday gets here.

37

Muffet, I realize I might seem to be something of a pain in the posterior for this thread. I don't mean to be personally punishing or unkind. But I cannot accept what you write here at face value, or without entering objection. Other patients are a part of this discussion, and can be influenced by errors in what you believe you know from a general background as a dental hygienist. We have an obligation to "first do no harm", and that obligation extends to challenging misinformation when we see it -- which in this case I'm afraid I do.

There are no "small bones in the head" that move around or pop when you pull on your ears. However it is common to hear popping sounds from air pressure changes in your Eustachian tubes -- the small tubules which equalize pressure on the two sides of your ear drum. Those tubules can be involved in TN trigger zones, and may be partly responsible for problems that TN patients experience when they fly in pressurized aircraft. That's a more likely explanation for what happened when the osteopath pulled your ears.

Likewise, there is no discernible movement between the cranial plates of the skull in adults. The skull bone overall does grow as children pass from infancy to puberty, but there's no flexibility in those joints. They are fused. In my opinion, any chiropractor or osteopath who asserts that he can "adjust" the cranial plates of the skull is an outright quack. Such claims are nonsense.

The neurology of facial trigger zones associated with TN is gradually being explored and better understood. Part of the process seems to be some form of Central Nervous System sensitization that might be functionally related to deafferentiation pain. Deafferentiation pain occurs when nerve endings at the periphery of a nerve distribution can no longer reliably transmit their normal sensation signals to the CNS which "listens" for these signals. Not hearing what it expects, the CNS might be said to "substitute" or "make up" signals that have a lot in common with phantom limb pain in amputees. Precise neurochemical mechanisms for this substitution are not yet established, as far as I know. But I do see speculation in medical literature on this subject from time to time.

Humans experience sciatica in the lower back or legs. Occlusion issues may cause pain in the face, and in TMJ patients that almost certainly happens for some. It is also plausible -- though far from well understood -- that pain in the face might be "referred" through tensing or muscle spasms, down into the neck or upper shoulders. But it's one heck of a long stretch to speculate that a clenched jaw leads to pain in the lower back. And it's a stretch that I personally am not willing to make.

If treatment by an osteopath or chiropractor helps you feel better overall, then by all means go with it. But on this one I would agree with your neurologist: don't spend a lot of money on it, and remain attentive to your outcomes. If you aren't getting sustained relief, then consider other options.

Regards, Red

Muffet said:


Red, Thank your for your concern....I am well aware that practically all the medical literature says there is no explanation for TN, that it is progressive and gets worse with age, most of us will end up with neurosurgery. I am in the dental profession, I am a dental Hygieniste. If I am looking for an explanation to my pain, it is my own initiative....But I am professionally convinced that occlusion plays an extremely important role in cervical veterbre problems, posture, sciatique...why not TN , and it could be that I am completely off base, I know that my bite is unbalanced, I had orthodontics at the time when it was thought more esthetic to square off the canines. That is the worst possible thing those orthodontist could have done to me! with no canine protection the clenching and grinding began and at age 49, I broke an upper left molar through clenching....there was a crown put in around 7 years ago that was too big, I ended up breaking off a piece of it. I have neuralgia on the right side that corresponds to the extra work the muscles have to close the right side. My right shoulder bothers me and another point in my pectoral muscle bothers me....I hope this equilibrating will alleviate my neuralgia, it may not but I have to exhaust all possibilities. We swallow 1500 times a day which puts 50kg/cm2 of pressure on our teeth each time....Clenching puts up to 150kg for a more extended time. None of the professionals that I deal with tell me that this will help. The first neurologist said you can try whatever you want but don't spend too much money......my first remission followed a chiropractor appointment where he pulled on my ears and the tiny little bones on the right side made a little popping sound and from that moment on I no longer had pain....., I actually felt the difference in my inner ear. This time I was especially stressed out toward Christmas and TN begins, like it has in the past during stressful periods.....Why does it spark when we use the muscles of mastication, or facial.....everybody who has this speaks of pain eating, smiling....there has to be a link and even if I am wrong I am sure that my neck is going to feel better after my appt with the osteopath dentist combination. I will keep you posted. Muffet
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Dear BriBri.

A belated "Welcome to Living with TN"..I want to congratulate you on generating one on the most substantive dialogues I have read since joining "The Family" over a year ago. This thread is an extraordinary example of the camaraderie, exchange of information, caring ,sharing and love that thrives here. And I especially appreciate challenges to information exchanged. I'm also reading names of contributors I don't recognize. I assume long time members continue to read the postings and chime in with there experiences. We've got something very special going on here. I am visiting my 93 year old Father in Boston and have spent a lot of time reflecting upon life. Living with TN has become an enormous power in improving the quality of my life. Gratitude to all of us.

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Hi Red
There is no problem for me I love discussions. I understand your concern that my observations and experiences could influence other members of our website. But I hope that everyone can listen and look at their own bodies and ask questions…that is all that I am doing really. There just happens to be a chiropractor above my dental office and over the years I have gone a lot…more that I care to admit. the pulling on my right ear took my pain away once, and I definitely felt a couple of pops, there are three little bones in the middle ear and one the stirrup is attached by muscle, now whether it was air or something being unjammed doesn’t matter does it, the important thing is it stopped my ATN in the opthalmique branch. The problem is I could go all the time for the cervicle veterbre, and just recently he said he had done a course where they spoke of occlusion being a problem. A light bulb went on inmy mind.l…why if he puts things in place do they come out of place again…that was the beginning of my research. Have you ever heard of “crainiosacraltherapie”…I found an article that was very interesting with case studies, unfortunately it was in French and I did not find anything exactly like it in English but there is evidence that occlusion can influence lower back and sciatic pain.
So I had my appointment today with the Osteopath who moves my head bones…Red it isn’t adjusting them it is far more subtle, more like the difference between pliable and rigid, at first appointment he found my head rigid this time it was already better, of course an adult skull is nothing like a babies, but there is a certain amount of flexibility and that is what the osteopath wants.
I had a 3 year remission after the ear pulling and I am already feeling an improvement now again hopefully this simple occlusal adjustment that I had today will straighten out the neck problem, I know it will help the muscles in my face because I feel the difference already. It is easy to do really just clench and unclench your teeth without releasing then completely and do this with your hands on each side of your face…a problem have which is provoked by unbalanced occlusion for example is that my occipital is not sitting centered on my atlas…and there are case studies that this can cause neuralgia. The mal position corresponds with the malocclusion and the stress on the right side of my face…the side with TN. I had a professor in school who wrote "kiss"on the blackboard and asked us what it meant…it meant “keep it simple stupid”. I am trying to apply that to TN, and so far it works for me.
I appreciate my neurologist, he wanted a IRM to make sure I didn’t have a tumor or artery compressing the nerve, but when there was nothing big, he prescribed tegretol and I went home, he siad that he would be seeing me again. Nobody has ever examined my face, teeth, muscles, head like today, and I am in the profession I work with dentist and have for 36 years! It is rare that one does what I had done today and it is so simple. It takes passion because it doesn’t pay I am sure he could have done an implant in the same amount of time! . Another interesting statistic I came across, 80% of tooth grinders are women, well there are more women than men that have TN too. I pray that God would lead me and give me wisdom and that from the very start. I hope you will research crainiosacraltherapie it is called differently in english, but if I go and check it I may loose this message… Muffet

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Hi Will,
Thinking about your description of your teeth and your jaw locking…the worn teeth could be that the vertical occlusal dimension is too short. That is your teeth are no longer tall enough to give your muscles the proper position so they have to work harder to close everything up…I am missing 4mm could be that is why I am vulnerable to TN…but I am just thinking outloud you know.Muffet



Will Newton said:

Hey Muffet,

That’s a really interesting appointment! It’s strange because I had precisely the opposite thought and thus came to the exact opposite conclusion, though it’d be interesting to see how it goes for you and so on.

I have very weak teeth due to the fact that I have broken most of them before and have no enamel to boot. For this reason I got really worried that I was going to whither away my teeth due to clenching as my teeth chip off virtually nothing. For this reason I recently went to the Dentist. He knows me really well as I’ve been going to him since I was born and he genuinely takes an interest in me and cares as he’s been through it all with me. He’s also the guy who told me I had ATN so I trust him whenever he tells me I have to do something or not.

Anyway I told him about how I was worried that I was damaging my teeth and on top of that that my jaw was locking due to the movements that I did when the pain was so strong. He went through it, taught me how not to lock my jaw and then to try and do other things other than clench. This said, as I wasn’t grinding, the clenching wasn’t too much of a problem other than straining the muscle. Since then I’ve been a lot better, but my neuralgia hasn’t gone. It went for a while as I’d started on meds but it’s come back now and will be getting worse by the day. Now that you mention it though I’ve started clenching more, as my ATN’s getting worse again, but I always saw it as ATN first, then the clenching.

I always thought that Chemotherapy had caused my ATN. Whilst it is true that the ATN started a couple weeks into Chemotherapy, it could be due to the clenching. My Chemotherapy treatment was apparently one of the most paingul and to add to that, I used to have them pump me as quick as it would go, causing a great more deal of pain for an hour at a time For this reason I’m very sure that I would’ve clenched. It was awful!! Maybe that’s why my ATN came at that point?

It’s an interesting point you’ve brought up and it’ll be interesting to look at it further!

Will

Muffet said:

Hello everybody, I had an incredibly interesting appointment last week. I went to an Osteopath who works with his dentist father in the same office. He was thorough very thorough, he looked at my posture, my spinal column then the way my teeth function together. Feeling the muscles in my face while I was clenching, checking how mobile my craniale plates are, watching my teeth slide to the side many times and how they touch…and here is what he said. I hit harder on the left side, it is barely a difference but, according to him this difference makes the muscles on the right side of my face work ever that much more to close the right side , this is the side that I have ATN. My crainal plates are rigid far more than they should be so there is obviously lots of muscular tension in my face!!! The muscular tension is quite possibily the cause of the neuralgia, the pain in my right shoulder and the stabbing bit in my right pectoral muscle. I am so excited, if you google osteopath and dentist you may find some interesting articles, many of our physical problems are caused by unbalanced occlusion and neuralgia is a common problem in the list. The Osteopath proposed an appointment with both he and his father dentist, he will first relax all of my face muscles, then I go to the dentist for equilibration of my bite, you may remember that this is the second time in a month that I am having this done, the first time it was my boss dentist, but he did it will my muscles in their malfunctional tension…it seems the result is never optimal
So how many of you clench or grind your teeth? This is not the only sign of malocclusion and it is possible to do this and not be aware of it…headaches upon awakening are a good sign that you do it, neuralgia too… 80% of woman do this, more than men and interestingly enough 80% of TN patients are women…could the cause be so simple??? I pray that it is. Muffet