[shayrae34]

I am new to this forum, but I wanted some some input and guidance. Before I share, thank you for your time.

I am a 21 y.o female.

I have always had typical TN symptoms - electrical shocks limited at the base of the nerve. I also have a condition known as dwayne's syndrome - an eye condition which I was born with and had surgery at 18 months. I have had TN since the age of 3 and have often attributed it to either the surgery or similar birth defect. I also have severe migraines, though not too often, which make use of my affected eye impossible - just from the pain and pressure behind the eye. The pain at the base of my skull is also fairly debilitating. These migraines have never occurred at the same time as an TN attack - mostly because both are fairly rare in recent years.

To be more specific with my TN, I have never been officially diagnosed. At the age of 15 I had electrical shocks in my face upwards of two dozen times a day - lasting anywhere from 2 seconds to 5 minutes. I went to a pedi neurologist who claimed I had tmjd, and a tmj specialist who ruled out jaw issues completely. I was told diagnosis was unnecessary and would only create problems with getting insurance in the future. My MRI showed nothing. I took neurotin, tegretol and trileptal during this year, with little effect. I eventually gave up with meds, and I went into remission. I still have small shocks weekly, severe shocks monthly, and huge attacks once or twice a year. For example I electrical shocks in my tooth for 6 hours. Probably my worse attack - by the time I could get into a dentist the pain had subsided, and no problems could be found with the tooth.

Now for the new symptoms, that I cannot explain.

A crushing pain on the right side of my face
Ear aches that last for ten minutes and disappear
Pin prick pains on my nose
Dull ache at the base of my skull, particularly on right side

The past 6 month my typical TN has also become more frequent. I began to notice that college all nighters seemed to increase the sensitivity of the nerve. Usually increased frequency comes with decreased severity. Now I get pains half a dozen times a day on average. On extra sensitive days, I get pains repeatedly, particularly when swallowing. More intense shocks are still about once a week, and there are no forewarning, such as face sensitivity. I expressed this concern with my PCP a couple months ago, and she immediately said I should simply take glucosamine for my jaw, and it was the end of the conversation.

The crushing pain is one of the worst pains I have experienced - aside from my tooth experience. It has only happened 6 or so times in the past month but its just awful, completely unrelenting. I'm nervous that its related to my jaw. I dont feel like my bite is off, but the moment the pain starts, I can't bite down properly. I try to lay down, but the pain is too severe for either side of my face to touch the pillow. I switch sides, but i feel as though there is pressure on my jaw, pushing it out of place.

I have been putting off seeing a neuro for my TN, because of I attend college out of town, and now I feel that if I see a new neuro I am going to be diagnosed with TMJD and my other problems will be ignored. I also feel as though doctors will not take me seriously because of my age.

I was tossed around so many times with doctors before, I just don't have the time or energy to do it again...let alone the cash I'll now need for new much much larger co-pays. If it helps, I am from San Antonio, TX - doctor referrals would be much appreciated.

HELP! Please, I am at my wits end.

[Bassetcase]

Hi, glad you found us - there is a wealth of helpful information here and a whole lot of caring and compassionate folks. I would suggest that you see a neurologist as soon as possible. They are usually the only ones who will diagnose TN, and it sounds like you definitely have some form of it.

I am by far no expert - thankfully, I have a very mild case of ATN compared to the others here. My episodes are very sporadic, and are always centered in my right ear and in the immediate area surrounding it. I was treated for "ear aches" for 3 years before they finally diagnosed TN. Sometimes like you, my ear will flair up for a few minutes and then just stop on its own - however, it usually lasts for 4 - 8 hours. Heat applied helps more than anything else and I also take a low dose of carbatrol (extended release tegretol) every day.

Sorry, to have not been much help with your symptoms, but I'm sure the others will come along soon and offer you some very good advice.

Until then, I am sending positive thoughts your way for some much needed pain relief.

Take care,
Rhonda

[broshaker]

Hi there, Hope you are having less pain today! I am also NOT an expert and have learned a lot by combing different forums. My son, who is 10, was originally diagnosed with TN in March. His pain has only been in his right ear. He was just re-diagnosed with Glossopharyngeal Neuralgia, which more accurately describes the location of his pain. Your symptoms may fit this dx also - it would be good to check it out. I agree with Rhonda, that you need to see a neurologist soon. Don't give up! You may have to see a couple of them in order to find someone who will really listen. Another caution; from all my reading, and from our personal experience, neurologists will stop at managing the pain with meds (which is a wonderful help), but will often not look to stop the cause/source of the pain. I know that the cause cannot always be fixed, but it's good to know that there are options beyond medication. Hang in there! Laurin

[shayrae34]

Somehow having just a little positive encouragement is enough to get the ball rolling. I will make an appointment in the following weeks, and get a few referrals.

I had never thought of looking into ATN or different forms of neuralgia, but I will do a bit of research and see what I find. Again, thank you both! And Laurin, I can't help but congratulate you as parent for taking the necessary steps in getting your son diagnosed. My parents were supportive, but less proactive. I wish you both the best of luck.


Shannon

[fazlab]

Shannon, I have TN and ATN. I also have the new pain you describe however the crushing pain isn't as intense as you describe. I am not a doctor but it sounds to me like you are progressing. You need to see a neurologist, preferably one that is knowledgeable in TN. Our disease is so rare, that sometimes they only see 1 or 2 patients in their career with this disease. Another could place to get information is the Trigeminal Support Page on Facebook. There are so many people on there, from all over the world. All you have to do is describe exactly what
you said here and ask if anyone knows a good neurologist in San Antonio and I am sure you will get some information that you are looking for. God bless you for dealing with this disease your whole life. I can't even imagine! Good luck to you and maybe I will talk to you again! Mary (fazlab)