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Old 07-19-2007, 07:49 AM   #1
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Baffled and looking for insight

Here's my story. I have been diagnosed with TMJ and Trigeminal Neuralgia. At least this is the suspected at this time, since I have yet to see a neurologist (this is yet to come).

My dentist is in the field of chronic facial pain and treatment, mostly associated with TMJ (my mother also has this, so no shock that I do as well). I have battled with terrible migraines since childhood, and chronic facial pain since 2001.

The dentist also has training/experience in the area of neuropathy. He is the one that suspects TN.

Since I got really bad (January 2007, I woke up in convulsions and this was my breaking point, and start of my leave from work and trek through various doctors) I have gone through a lot of different symptoms. For a very long time, I have had a faint but noticeable foul taste in my throat/mouth. This began around February 2007. I went through about 2 months where I was dizzy constantly. I found relief through taking Serc (relieved the symptoms to about 70% of what they were without the Serc) but I still experienced difficulties with my vision (double vision for example, I would see 2 televisions sitting on my couch a few feet away). When the vision difficulty originally began, I was so dizzy it impaired me. I saw text dripping on my computer screen. I would see my phone book levitating off my coffee table. Spooky stuff.

The vision difficulties began to subside, and then I got my TMJ splints to wear. 2 days after I began wearing these, i lost my sense of taste and smell. 2 weeks following this, I began experiencing what I believe is burning mouth syndrome. This is agonizing. Brushing my teeth relieves the numbness/burning for a period, and then it returns. First thing in the morning, I either have very faint symptoms of this, or like this morning, the burning is there when I wake up.

I go to a chiropractor who works closely with my dentist for my TMJ. He is confused about this burning mouth syndrome, but believes it is due to the TN. My dentist and another dentist I visited believe that the burning mouth is the TN.

This is the thing however. While the burning mouth is mostly on the right side of my tongue/mouth, I get a slight tingling occasionally around the left corner of my mouth/lips. The foul taste has picked up with the burning mouth syndrome it seems.

I am patiently waiting for the neurologist referral at this point, but I am obviously very concerned. I have tried to find information online about TN and burning mouth syndrome. Of course, I am then wading through many different and lengthy articles by doctors. I just want to hear from real people who have experienced something similar for insight. Stress is the last thing I need at this time if I am hoping to get better.

 
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Old 07-21-2007, 08:35 PM   #2
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Re: Baffled and looking for insight

Well, kind of surprised about this one, but thought I would share.

I haven't changed anything about my diet in the past 3-4 days, except I began taking an adult multivitamin and stopped drinking coffee (I have drank at least 1 coffee daily for years). The numbness/burning is almost completely gone. I am unsure what positively affected this, if it was the coffee (I am thinking this) or taking the multivitamins (less likely, believe these would take longer to have a positive impact). Currently, looking better for me and much happier. Even beginning to get some smell and taste back .

 
Old 07-22-2007, 03:02 PM   #3
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Re: Baffled and looking for insight

My sister had TN. 7 years ago she had vascular decompression surgery for it at Presby Hosp at U of Pittsburgh...a doctor there had invented the procedure. It was highly effective for her. The Trigeminal Neuralgia Association can recommend neurologists in your area who are conversant in TN treatments.

 
Old 07-23-2007, 07:39 AM   #4
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Re: Baffled and looking for insight

Quote:
Originally Posted by Titchou View Post
My sister had TN. 7 years ago she had vascular decompression surgery for it at Presby Hosp at U of Pittsburgh...a doctor there had invented the procedure. It was highly effective for her. The Trigeminal Neuralgia Association can recommend neurologists in your area who are conversant in TN treatments.
Great info. Thank you very much. I will have to look into this and see what they have to say. A friend also has TN and said she responded wonderfully to epileptic medications, so perhaps I may want to look into these as well.

 
Old 07-23-2007, 01:25 PM   #5
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Re: Baffled and looking for insight

My sister tried a variety of those...along with other things. Unfortunately, they were not a remedy for her. And the side effects were debilitating. Hopefully they can help you.

 
Old 08-04-2007, 01:02 PM   #6
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Re: Baffled and looking for insight

Well the good news is, the burning mouth appears to be going away. Barely noticeable now (well, still there a bit, but isn't nearly as predominant as before).

I do think with the moving of my jaw and everything else in the area, the movement affected other things, such as nerves in the area that were going haywire. I went to my TMJ dentist and chiro again, and both said (after doing a bunch of tests) that I have improved dramatically with my treatment (my bite is almost aligned correctly already, what a relief!).

The treatment I am going through is fairly new technology apparently (2 years old I was told by chiro) so I am sure a lot of the cases going through what I am will have different side effects, and that's perhaps why my TMJ dentist had never heard of the burning mouth with the rest. Of course, I am a rare case, because I have the neurological along with TMJ.

So I am feeling much better, still getting headaches, but a lot of the pain is being resolved.

 
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