Denial - Is it really TN?

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1

It has been very enlightening to read about everyone's stories and to learn more about this condition. Thank you for sharing and for the few of you have shared nice comments with me. I continue to have difficulty believing that this is what I have, but deep down I know it's true.

I feel like I self-diagnosed myself, as I discovered this disorder when I was searching on the Internet for something to explain the pain I was having. I had already gone to the local Medical Center complaining of sinus pain. They do the the normal tapping on the sinus cavity and I jumped off the table. Hence, the prescribed the strongest antibiotic and flonase. It was after I started these that the pain worsened. After finishing the 10 days of antibiotics and finding TN on the web, I printed out the medical information and walked into my primary care physician. I told him that I thought I had TN and he said he agreed, without even doing much of an exam. He prescribed Neurontin and referred me to a Neurologist (my appointment is 2/16) - is this typical?

Then, I found this website (thank you, God!) and have been educating myself further. I have been thinking back in my life and have realized that I have had this condition for many years. It may have started when I had 26 cavities filled right after I had my braces removed. Shortly after that I had a root canal performed in my lower left jaw. I thought is was all a dental fear but my mouth would often hurt like I needed another root canal. I was so afraid that I didn't go to the dentist for 7 years. When I returned, I made sure that whoever cleaned my teeth went very slowly, was gentle and never used the laser. Invariably, the work would 'awake' the nerves and would swear to never go to the dentist again. The nerve would quiet down, taking me into blissful remission. Whenever times became stressful, my teeth would start to hurt again. I've been in for more root canals and one double root canal. I think I have 10 capped teeth and 6 root canals.

I live in the mountains where it snows and is cold in the winter. Almost every January, the pain comes back (though it's been a few years this time). This particular January, I could not tell where the pain was originating. It traveled from temple, to my upper sinus, to the side of my nose to above my teeth, between my teeth, to various bottom teeth to my jawbone and my jaw socket. The pain was debilitating and I could do nothing else while it was there. The pain lasted 15-30 minutes, and then suddenly it would leave. On the worst day, there were 7-8 episodes. Is this all typical?

Of all people to get something like this, I am one of the worst. I am a very health-conscious physically fit person who is the worst sick person ever. I am a business owner and cannot afford to be sick let alone be on drugs. I absolutely detest drugs and will go through hell before taking anything. I believe I have extraordinary mental capacity and can control this (does this sound familiar?). I have been focusing on stress reduction and relaxation and the pains have subsided for the most part. I think I have 2-3 in the last week and they have not been as severe as the others. My guess is that I am going into a state of remission, I hope. This time, however, I feel this continual dull ache in my jaw joint and my ears are ringing still. The question I have and the question I will ask my neurologist is whether or not I can expect that the next flare-up to be even worse than the last? Or does it depend on the amount of stress in your life? (This last year was perhaps my most stressful ever after experiencing the deaths of my brother and sister, ages 58 and 57-that is another story. Oh, she thought she had TMJ, wondering if it was really TN.)

Doesn't it seem like we could be imagining all of this? I just don't want to admit to anything.

2

I've beeb in denial for over a year now. I keep researching and researching anything I can find that could explain these symptoms and yet not be TN. I have asked 2 doctors now if I should be seeing a psychiatrist because this has to be psychosomatic. Each time I have a "good" day, I think I am "imagining" this also. I may never accept this. Meanwhile, I keep taking the darn drugs in hopes that I will gain some iota of control over the pain. It is too discouraging to think otherwise. Hang in there. There are a few universities and doctors trying to find a "cure" for this and other neuropathic disorders. This site is testament to the number of people coming forward to "scream" for help and attention.

3

Yeh, this is a tough one to accept that is for sure. I have had this for 7 years diagnosed. But like you looking back over the years I probably had it in my twenties. I had braces and remember being extra tender on the right side when I had braces put on and having dental work done over the years. . I still have my days but I have this website and the peeps here. I am thankful for all of you!! Best wishes. Min

4

Although stress can be a trigger, the pain is caused by damage to or compression of the Trigeminal Nerve. The damage or compression may or may not be visible on an MRI.



Unfortunately, many of us have had to resort to self diagnosis, (that was later validated by a neuroligist) due to many doctors not being familiar with this condition due to it’s rare factor. Most doctors have never treated a TN patient or misdiagnosed it as TMJ…don’t even get me started on the dentists who caused Trigeminal Neuropathic Pain.



Diagnosis is a tricky issue and should only be done by a neurologist familiar with this condition. However, this is an excellent place to start. This group has invaluable information and the more you know the better able you’ll be to take a proactive part in your treatment and the decisions made about your course of treatment.

There’s no neurologist who can answer your question about what your next pain flare is going to be like. There’s no way of knowing or predicting. If any neurologist guarantees anything, you should run - not walk - to the nearest exit.

5

I think we all feel that "of all people to get something like this, I am one of the worst." Most of us are health conscious and have jobs, high paying, super important jobs. So you're not "one of the worst", you're just another patient suffering this condition.

I hope you find something that relieves your pain.

6

I sure didn't mean to compare myself to anyone else who has TN. What I meant was that this is the worst possible thing for me. I really have just never been sick or had anything wrong with me. I've had a few colds and the flu once or twice and sprained my ankle, but that is it. I just am the worst person from my own standards when I am sick. I tend to be a recluse and am pretty grumpy, hating the feeling that I don't feel perfect. This last series of episodes was terrifying for me, as I just didn't know what was wrong with me..... I am new to this website and to writing a blog, so I apologize if I offended anyone.

7

It's okay to compare yourself to other people with TN. What I'm trying to communicate to you is that we all feel that way -- we all get reclusive and grumpy, we all the hate the feeling that we don't feel perfectly well. Many of us had never had other health problems -- some people here are in their twenties. The episodes are terrifying for us all. So you're not an exception - you're just another patient with this condition, responding to it the way we all do. In a way, that should make you feel better, or at least less alone. (Nothing to do with offending people)

Yes your appt with your doctor was pretty normal, if not better than what most people get. Some people's doctor don't even know about TN, so your referral to a Neurologist is a good thing. But don't be surprised when all he does is ask some questions and prescribe you meds. He'll also send you out for an MRI, but at this point, there's nothing else he can do. There's no definitive test, and there's no definitive cure.

If your pain is bothering you enough that you sought out this site, maybe that's a sign that you do need to try some medication. Some people are able to manage their pain with medication, and your body gets used to the side effects after a while. You'll know when you can't go on without meds.

When you see the Neurologist, please remember that it is very important that you're able to accurately describe your pain -- some pain is like lightning, some pain is a constant ache. The diagnosis and the meds given are basically determined off of your descriptions, so the better you can describe your pain, the more likely it is that you'll be given the right course of treatment. (and yes, stress flares up the pain)

Depending on how much research you do, it's possible you'll know more about your condition than your Neurologist. It is unlikely he will be able to tell you if your next flare up will be worse, or longer. It just varies too much and everyone's body respond differently.

Many of us still have periods of denial. I've been dealing with this for almost two years, and if I have a few "good" days in a row, I'll wonder if I'm going to be "okay" and maybe it's gone. But the next day the pain is still there and worse. You'd think I would know by now that a couple good days doesn't mean anything.

Long story short, you're normal. We all feel those same feelings, fears, and of course, pain.

8

This is a tough diagnosis to live with, to not have a "cure", not even had definitive treatments and for some, have pain 24/7 always. And many doctors still don't get it. Did you have a CT scan and endoscopic exam of your sinuses? That would definitely rule out your sinuses if the ENT did that. I have been through a lot of dental and sinus issues with surgery, so it's no wonder mine started. And I was going through the most stressful and full of anxiety time in my life (still am). So the more I learn and read, it's no wonder it started. I think looking back over my life, I probably had other TN pain before, never this severe and constant and LONG.....but I know I have had twinges and tics before. I think it's great you have the appt with the neurologist. Hopefully it's a good one who can shed some light for you and give you some peace of mind at least.

9

Thank you for commenting. Yes, I did have a full CT scan of my sinuses and all came back normal. It's been a month since I met my neurologist (and friend). He tested my the various branches of the trigeminal nerve on the right side of my face and discovered that the 'mental' branch of the nerve was totally dead, and he asked me why I hadn't come in before! We agreed for me not to go on medication as I have been in remission thankfully, but he said I could call him anytime even at him and he'll call it in immediately. When the neurologist looked in my month, he was convinced that it was my extensive dental work, like you, that caused the condition. Again, thanks. It is comforting to know that others have similar experiences as myself.

10

Hi Sally do you have any pain or aches at all? I just wonder what peoples defines remission. i count myself as in remission but have aches, tingles, discomfort each day but it is not 24/7 and it is not pain.

11

Well, yes, I suppose. There is no pain unless I push right where my jaw opens and closes. It is almost like a calm volcano. I can tell that the pain could come back (erupting) at anytime and there are times when I feel pinches between my teeth or in the sinus cavities. Now that I know why that happens, it's both comforting and worrisome. I never ever want to feel the extreme pain of an attack, but I know someday I will. Is that how it is for you?

12

Its been 10 months since I had the full electric shock attacks. Now I get aches in the teeth, jaw and sometimes cheek. Different parts of my face ache on and off. Today I got a heavy pain whilst eating and I worried this would be it, i had a dull ache for a while but then it settled down again. like you i hope I never experience that first attack again.

13

I think that what happened to you also happened to me. I have had multiple injections in the same place at the back of my jaw.... that is actually where my continual soreness is. Interesting. My neurologist informed that it was the mental 'branch' of the trigeminal nerve that is dead. When I have my attacks the pain travels all over from my temple to my teeth (upper and lower) to my chin and sinuses. I thought that where my soreness is is where the TN originates. Can you shed light on the disorder you mention?