Hi there! I just wanted to introduce myself.

I've lived with trigeminal neuraligia for about 23 years now.

The doctors are unsure if the large cyst in my right maxiallary sinus caused it or the subsequent surgeries (4) and teeth removal were the cause.

Regardless of the cause, it's something I deal with as far as management goes on a daily basis.

I hope to meet others who can understand what I go through, though I'm sorry anyone can.

I also have the dx. of fibromyalgia.

I'm glad to be here.

KD

I'm a long-termer tn patient too. But there doesn't seem to have been any one particular cause, which leaves me in the category of having a sagging brain or sagging veins (why not, at my age everything is sagging -sob). I read this fascinating little tid bit the other day saying that the veins on the back of your hands are indicative. Now how about that? Well, yes, the veins are prominent and squiggly and have been since I was really young so maybe there's something to the theory. Unless I let things get out of hand, the Trileptal does a fairly good job of controlling my pain.

I've been really interested in how different pains affect us. I had a sudden onset of polymyalgia rheumatica, which I suffered with for 11 months before finally being put on prednisone. The comparison with the tn, how they both affected life and the enjoyment of life, and how I reacted to the pain has been a learning experience. It makes the pain scales, the whole 1-10 stuff, seem pointless in a way. The language of pain leaves a lot to be desired.

Nancy - a sunflower in the fog today.

LOL. I have found after four children I dont have to be your age to have everything sag. I dread getting older. LOL.

crystalina

I certainly can relate to what you are going through. Did you have the cyst removed and if so did the TN appear after the cyst removal? I wrote several papers on this and did a survey on the net some years ago. My Dental work injured the branch of the Trigeminal nerve and unbeknownst to me or 33 doctors here, I developed RSD in that area which spread to full body. Any injury to a nerve can cause RSD. I wish you well.

I hadn't realized that the RSD symptoms were more generalized and not just limited to the area of nerve damage. Do you mean constant pain in remote locations? Since you've been working on this for a while, could you - or anyone here who has had experience with this - explain more fully?

We keep returning to dental work as a possible causative or exacerbating feature of tn. I think most of us are horribly afraid of dentists, while also realizing that dental care is important. My last attempt to get good dental care had such terrible results, despite my best efforts - seeing that the dentist had the professional packet from the TNA, careful medical record, discussion with the dentist. If only a greater effort were put into educating medical and dental students about the need for caution!

Since none of us were ever handed an owners manual for our own bodies, every time someone shares a new report I feel like I've added another page to the one that's taken me 76 years to create. Nancy

Hi Nancy, Sad but true many DDS do not have clue about the ramifications of an injured branch of the trigeminal nerve. This nerve has three branches with lil twigs feeding off of them. Any form of dental work can injure a main branch or a twig, i.e. Root canal, oral extraction, oral surgery like an apioectomy and yes, even dental implants. Also, injectible anesthetic can be placed in the wrong area OR one's anatomy is off kilter and nerves are not quite where they should be, per text book. Also, some people cannot take certain anesthesizing agents as this can compromise a nerve. I cannot take Lidocaine or Marcaine with Ephriniphine. (They call this EPI for short) I avoid them like the plaque. If a nerve has been injured/compromised the nerve in time can heal but some times it takes an astute DDS who realizes what has happened and seeks competent help for his/her patient. This is usually regrafting of that nerve within a 6 month period of time. Regrafting is done only by an expereinced Oral Surgeon and there are not too many of them out there that have the knowledge or feel comfortable or want to deal with this.

When I was injured, I found a doctor at John Hopkins but it was way after 6 months had passed. Three years after the fact, I flew to Florida and this is when I was DX with RSD. It had become full bodied by that time.

I am so much better now but very cautious when I am in the dental chair. I have 4 wonderful DDS that I educated about this condition. They use only short acting injections now and depending on how long a procedure is, I usually get two if needed. One in the beginning and one close to the end. They tweek where they inject. They tweek how they extract. They avoid the original injury site like the plaque. One slip up, this nerve can rear its ugly head and set me off into space. It has not happened in 6 years now.

I am not a health care professional and am sharing only "my" story. I wish you well.

Hi there, Nancy!

This is the old Silver Swan, still old and still silver! Was so glad to find the Forum now under a new name but the same familiar names, so glad to see them. Hope things are well with you. Glad to read your posts again. It's been a long dry spell with the Forum down.

Shirley H.

Kimmy,

The guy in the cubicle next to mine has fibromyalgia and TN; same as you, except he had the FM first and he's only had both a few years. I've had TN nearly 20 years, making me another longer-term TN'er. You don't look near as old as me, so I suppose you got it young.

Glad to make your acquaintance and look forward to seeing you around the forum.

Bob S