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

It's sooooooooooo good to talk to others who know what I live, ask the same questions I do...relate. I'm sorry y'all do though. On the other hand, I'm very thankful you're willing to share. I've gone through the gambit of being misunderstood with this.

I'll go into a bit more...

I was 20 when I began having facial pain. I was used to cheeks aching (I live in sinus capital). The pain progressively got worse until it was immobilizing when it was at its worst. I could do nothing but sit and rock while holding my face in the end. Again, I was 20 and a young mother who knew next to nothing about medical issues and doctors were akin to gods on earth.

I began going to drs. They would tell me that I had a sinus infection, sinusitis, etc. This continued for six months. They would give me antibiotics and pain meds and send me on my way. I was barely functioning at the end of all this and my mother came over during an "flare" and said, "Kimberly, you're a grown woman now, but if you don't go to the dr. and demand they take an xray or something, I'm going to cart you there and demand it myself."

I made another appointment and a different dr was on call (he was actually a surgeon filling in). He did a sinus xray and said he saw nothing. I couldn't take it anymore and bawled right there and said, "Nobody understands my pain. This isn't a sinus infection. This is horrible! I can't live like this. I'm beginning to think I'm crazy. Just because I don't scream and shout doesn't mean I don't feel like I can't stand it." HE took me seriously. He asked me specifically where the pain was and there were certain points...even going down into the two front bottom teeth. You could see the lightbulb go off in his head. He said, "It sounds like you might have Tic Douloureux". He told me that he believed my pain and would help me. He gave me pain meds, but also gave me a medicines he said was for seizures but would help the pain. He was right! Two days later it wasn't as intense but I didn't feel that I could function well.

Three days later thinking, "I finally know what's wrong with me," I got a call from the hospital saying they were referring me to a surgeon; that I had a large cyst in my right maxilliary sinus. I was petrified. The scheduled it for the next day.

I went to see him and he said it was the largest cyst he'd ever seen and couldn't imagine the pain I was going through. People were hearing me! They understood how bad it was! He told me I'd be having surgery right away. I asked if it would be outpatient. He then laughed at me. He said I would be in the hospital for 3-5 days as it was a very complicated procedure. He then warned me that people may have to stay long for IV pain meds as it was a very painful procedure. He was honest. I prepared.

I had the surgery (Caldwell-Luc) with reconstruction. Two hours after returning to my room I was going to the waiting room to visit with people. I passed the dr. in the hall and he did a double-take. He couldn't believe I was up, walking around. He asked about my pain. Certainly it was nothing I couldn't handle at that point. He told me at the first checkup that that's a testiment to the severe pain I was in before the procedure and grimaced.

The surgery pain was nothing compared to the pre-surgery pain. I healed well and went back to work before I was supposed to. All was going well.

About six months later, the pain began to return...same pain but much less. Within a couple of years it escalated to the point that I was back to the ENT. He said everything had broken down in the sinus and he had to go back in. I later found out that surgery probably wasn't necessary; that it was probably the TN then. He said there were MANY nerves cut each time I had that procedure. I remembered the ENT telling me with each procedure the chance for my face to droop increased (due to all of the nerves involved) and he was especially concerned because of my young age. My face doesn't appear to droop, excepting when I talk...slightly.

There were a total of four surgeries, many teeth removed (saying that all abcesses aren't seen on the films ), etc. It was a horrible time filled with misunderstanding by doctors, ER visits, dr visits, etc. Sometimes when drs. don't understand, they want to blame the patient. I went through it all...additional unneeded surgeries, teeth removal from drs guessing, etc.

Seven years ago, I was sent out to pain management by my GP. They knew immediately that it was probably nerve damage and helped me to treat it. I didn't feel comfortable there, though, for reasons I won't go into. I was referred to another specialist who is a neurologist first. He dx'ed me immediately with TN, saying that the pain was very specific to it. He said it was hard to say if the initial cyst caused the damage or the first surgery. I personally think it was the first surgery because I was pain-free for about six months there.

He said there was a procedure that he could do to the trigeminal nerve, but as soon as he mentioned it, he told me of the potential damage/danger. I told him that I couldn't consider that at this point as I'm still functioning too well with minimal meds. He agreed.

I've been with his office since with the best group of drs I've known...so knowledgeable and understanding. I went today, in fact, and they sat with me for 20 mins...listened to the mind/body/spiritual working I'm getting ready to do, about this website, etc. They're just great.

If you made it through this, I'm impressed. I didn't mean to go into all of that, but also I did. I want to let y'all know me.

Again, I so appreciate having those I can talk with who understand what it's like to say, "no, not much will help right now. I just need to pray for sleep" or "I can't go out today, it's too cold" or "I have to drink that through a straw because I can't risk cold at one side of my face right now. I could go on and on.

Thank y'all so much for being here.

KD

PS - I think I lied...I said 23 years and it's right now at 22 years that I've been dealing.

Hi Kimmy,
I think many of us can relate to the being fobbed off about the pain we experience, I had two consultants that were next to useless before I was put in touch with my current consultant, who is amazing.
22 years is a long time, I'm into 5 years and I'm bilateral, I cope pretty well right now, also my helping out at the TNA-UK gives me relief as I'm surrounded by people that understand, along with my forum friends this gives me a lot of comfort knowing I have them to turn to when things are tough.

I hope your feeling good today.

Take Care
Tracy.