We are patients living with Trigeminal Neuralgia, here for your support.
What is your TN like?
How does your TN affect you?
Typical? Atypical? or just plain weird?
I think mine fits into the last category.
I had the stabs and jabs and the belief that I had a tooth problem at first, for about three months at the end of last year. Then this year it has changed sides and it is totally different, more like the sensation of a frozen face, but at the same time a tingling burning sensation, mostly in the maxilliary (is that V2) area. It often feels as if I have a tight mesh over that side of my face. It seems to me as if that fits the Anaesthesia Dolorosa description. but so soon! Odd to say the least. It seems to be triggered by wind, and cold and conversely heat as well, and then just comes on out of nowhere.
The other thing is the depression that comes with it, it's not so much a reaction to the pain, but an inherent feeling of being locked in, trapped by it all. It's very odd, but I have to say the depression lifts quite quickly once the sensations fade. I used to feel much the same way when I was experiencing the vertigo, ear pain, and tinnitus that was at it's worst several years ago. Just a sense of total isolation and nothingness. Horrible, but I survived that so I have hope that I will survive this.
I'm fairly sure all this is somehow related to my neuropathy, even the hearing loss and vertigo. I don't know for sure though and I've not yet met a Doctor who knows either.
Well. that's a little bit about where I am at the moment.
Replies to This Discussion
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Permalink Reply by jujubeee on -
Well now I've gone and done it and had a TN attack on the opposite side! Can't I be typical at something for a change? Do I have to have all the odd and weird diseases?
Anyway I have lupus. This attack was lesser than the first. The first was an absolute nightmare. I had zapping, all 3 branches of the trigeminal nerve involved and tonus in my neck so bad I was paralyzed for minutes with no muscle control and included hemofacial spasms. Like you, the first attack I had started in my teeth. I had them looked at since I had a toothache on and off for a few months, then came the finale. Yikes! It felt like someone was trying to pull my teeth out from the inside! My forehead felt like it was in a vice and I sported a wink and twitch for weeks after in my left cheek, although the waves of attacks came over a 3 day period then lessened in intensity and frequency. A week before the tn attack my jawline felt "tight" and I thought I might be losing weight, as it was prominent. Right before the attack started my nose started itching like crazy.
I've had burning mouth syndrome in the past that lasted for months, I've had Bells Palsy twice, I've had distorted smells that are really annoying. These are also caused from those pesky cranial nerves.
Like you I've had PN (peripheral neuropathy) for over a dozen years and in the last couple years it has worsened. I get the freezing, burning, zapping, hypersensitivity and feeling like paper cuts. I get nerve compressions all the time, radiculopathies in my shoulder too.
I have lupus. Other than inflammation attacking the myelin sheath on the nerves I don't have an answer. My rheumie is slow to put a finger on it as cns lupus since I'm prone to muscle and nerve viruses so bad I've had muscle weakness. My gut tells me it's lupus and inflammation in the cranial nerves and that's why it comes and goes like it does.
I'm in PHoenix, and I'm presently looking for a neurologist who has some expertise in cranial neuralgias. Mine doesn't. I am curious in what my options are and I want to be sure that my lupus is being treated aggressively enough to help counteract some 0f these problems.
Nice to meet you, Julie
ps I made a video about my lupus and tn : http://youtu.be/7CyhNS8tLOM
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