Have been diagnosed with TMJ one too many times

Symptoms & Treatments Recommend a Doctor, Therapist, or Clinic (Positive
1

Hi everyone, this is my first posting, I really need some opinions/help. I am very depressed, and need some support. In 2006 I was working out and all of the sudden my right ear felt clogged. I had been to a dentist for a tooth filling the day before. I went back to my dentist, she didnt seem concerned and offered that I go to a ENT. I went to the ENT, he could find nothing wrong, and put a tube in my ear, just in case that was the problem. I followed up with him after the surgery and told him it was still clogged and he said that it must be "in my head". At that time, the pain was not bad, just had a clogged ear.

Then, a little while later, I started having ear pain, deep ear pain, with itching deep inside. The pain would make me sick and dizzy, and I vomitted 2-3 nights per week. The pain was in the ear but by the end of the day, it would take over the eye, and I would have a headache.

I went to chiropractors, doctors, and other dentists. I spent over 5K on splints because I supposedly had TMJ, but i dont have any cracking or grinding when I open my mouth, and my jaw doesnt hurt. Just my ear. The dentist wanted to try to "fix my bite" by grinding at my teeth, but I decided not to do that because she had to adjust the splint so much, I couldnt understand how the procedure would help.....

I still have deep throbbing pain in my ear, despite physical therapy, splints, and a million doctor appts. I can hear my heartbeat in my ear most hours of the day, and it hurts really bad. A small voice says "maybe you do have severe TMJ" but it doesnt make sense. I am tired of being told i have TMJ, (but I feel like a hypochondriac if I self diagnose)

I take tramedol, piroxicam, and citalipram (generic celexa). This helps, but the ear pain seems to be getting worse. I have had two days in the last month where i get "electric shocks" in the ear. The pain seems to be getting worse.

I have an appt with the neurologist on the 30th, but Im soooo scared he will not pay attention to me and tell me i have TMJ. I dont know how offer up that I think I have geniculate neuralgia without him thinking I am self diagnosing. What do you guys think... Does it sound like TN type II? Has anyone had experience with going to a neurologist and telling them what you THINK you have?? Please help!

2

I would be perfectly upfront with the doctor. I went to one neurologist, told him I thought it was TN, but he disagreed. I accepted this, and wasted 4 months on medication that didn’t work, and constantly increasing pain.
When I went to the second neurologist I said" you may not want to hear this, but I have done a lot of research, and I think I have TN". He proceeded to examine me , and said, " well, I agree with your diagnosis! "
It is often difficult to speak with your doctor in this manner, and it not always well received, but it may be necessary.if at all possible bring a friend or family member with you to your appointment for support.
Best of luck
Christine

3

Okay I will. Also, when I read about people not being able to leave their house because of the pain, and about how they can hardly funciton, I wonder if I have it. Because mine is not as bad. I work and just suffer through the ear pain, I work out and look perfectly healthy, but the ear pain is always there. The attacks that i have had with the lightening bolt feeling are not something I can work through but the constant pain is usually something i can work through. Is that normal, or does a TN patient have debilitating pain always?

4

I have been diagnosed with TMJ three different times. I was also told I grind my teeth and had a night guard made. It makes no difference if I wear it or not and my jaw doesn't click or anything.

My pain now is way beyond just my teeth and jaw. Luckily my medication is working well. I have ear pain too. I was also sent to an ENT who could find nothing wrong. Every examination I have had--whether is was a dentist, a doctor or specialist has come up with nothing.

I wish I had advice for you. It does sound like Type 2 to me. In my experience, I haven't even been able to get a proper diagnosis. Just "Atypical Neuropathy" and I am still searching for a neurologist or specialist to help me. It is difficult. It seems many doctors won't acknowledge (or maybe know about) type 2. Hopefully the neurologist you are seeing will happen to be one that will listen. I think you need to explain anyways. We have to be our own best advocates with this thing.

5

I had the burning boring pain intermittently for nine years, before it became intense and constant. The shocks started about a month later.within a year, I developed the same pains on the other side.i was diagnosed with bilateral atypical TN by a leading TN expert.
We ll deal with pain differently.There were days that the pain took over, but for the most part I just gritted my teeth and got through it.
I hope you find the right doctor who can help!
Christine

6

Hi,

I work full time and normally the only problem I have is that my meds make me sleepy some days.

When I was first diagnosed many years ago I had no idea what was causing the intense electric shock pains in my face. Like so many people at first I thought it was my teeth. After my dentist told me my teeth were fine I went to my doctor and told them I wasn’t leaving until they could tell me what was wrong and how to fix it. At one point I had three doctors in the room with me and my dentist on the phone. Then they called my neurologist (migraines) and conferenced him in. When I explained the pain he said he knew what it was and told me to come over as he could help me. He diagnosed me with TN.
After being on medication for a few years the TN went into remission for over 10 years. This time I had a different neurologist. I went in and told her that my TN was back. She asked me to describe the pain. When I finished she nodded and said yes, you are right. It is Trigeminal Neurolgia.

I don’t see anything wrong with being an educated consumer, and trying to self diagnose. Most of my docs have been impressed that I did research and had good questions (different medical issues). If your neuro gives you attitude leave and find a neurologist you can talk to that will listen and take the time to explain why they think you do or do not have TN. And if they don’t think it is TN, what do they think is going on since you have eliminated TMJ. You know your own body the best so listen to yourself and your own common sense. With all due respect, doctors do not know everything and often they are making nothing more than educated guesses.

My prayers for a successful appointment and pain free days in the future.

7

All of this helps so much, thank you all for responding.

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Thanks so much for your comments! I feel better, I may not be crazy after all. Im going Monday....we will see what they say!

9

Hi Renee, have you gone to the Doctors link at the top of our page? There is a helpful link there on preparing for the doctors appointment. It might come in handy this weekend to ensure you are ready for your appointment on Monday. My first visit with a neurologist was mainly because I had vertigo, dizziness, etc. and he was pretty thorough. Hopefully your neuro will prescribe an MRI as most neuros will request early on.

10

Well i went to the neurologist, and he wants me to get an MRA and angiogram. I think he is on the right track, he agrees that its TN if the reports show no anuerysm or tumor.... it was kinda strange to hear him say that I most likely have TN. I thought I did, but its becoming more of a reality. He is starting me on Gabapentin. Anyone have results with that? He said i would gain weight, which---- if it works, is worth it.

11

I am on Gabapentin and it helped from the beginning. My gp started me very slowly and, for me, it worked well that way. She started 100mg once a day for several days then increasing in 100mg increments until I found relief. Early on, I found relief with just 200 mg. for about a year. Then I had to go up a bit a year later. I will say that when you go up very gradually...100 mg at a time, side effects are minimal. The weight gain happened but it is worth having a more normal life. If Gabapentin proves intolerable there are other options.

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How much weight did you gain, and was it due to inactivity, greater food intake, or just the pills in general....

shadow2 said:

I am on Gabapentin and it helped from the beginning. My gp started me very slowly and, for me, it worked well that way. She started 100mg once a day for several days then increasing in 100mg increments until I found relief. Early on, I found relief with just 200 mg. for about a year. Then I had to go up a bit a year later. I will say that when you go up very gradually...100 mg at a time, side effects are minimal. The weight gain happened but it is worth having a more normal life. If Gabapentin proves intolerable there are other options.

13

I know its silly, but i worry about things like this.

Renee said:

How much weight did you gain, and was it due to inactivity, greater food intake, or just the pills in general....

shadow2 said:

I am on Gabapentin and it helped from the beginning. My gp started me very slowly and, for me, it worked well that way. She started 100mg once a day for several days then increasing in 100mg increments until I found relief. Early on, I found relief with just 200 mg. for about a year. Then I had to go up a bit a year later. I will say that when you go up very gradually...100 mg at a time, side effects are minimal. The weight gain happened but it is worth having a more normal life. If Gabapentin proves intolerable there are other options.

14

I read your post and definitely think that you have ATN. I have been suffering for 3 years now with bilateral ATN over both eyes. It took going through five neurologists to find myself with the University of Utah headache clinic. My doctors have been great and not once has anyone questioned my diagnosis.. I ended up taking the maximum dose of Gabapentin (3600 mg). I did not gain any weight. The biggest side effect for me was memory loss. I am now off of the drug since I got used to it and it was doing nothing. I am now on Lyrica and Amitriptylinee. I think these dugs have made me put on some weight. I have gone up about 5-7 pounds since the beginning of the year. Each person's side affects are different. Just go up slowly on your dose. Good luck to you. You have found a great support site now. Let us all know how you are doing once in a while. Lora

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My maximum dosage of Gabapentin was 2400. I am a small person, but I only gained about 5 lbs. I am not sure if it was the medicine that caused the weight gain, or the fact that I did become much less active due to the pain of TN. The only side effects I had were dizziness, and being more tired, but I was able to function pretty well.
Christine

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Thank u all so much for the support!!!