I am attempting to establish rather quickly some norms of TN pain descriptions. Whether you have type 1 or type 2 or combinations of both; past procedures, etc… Just explain what type 1 or 2 you think you have, the procedures you have had, the type(s) of TN pain you have (had). Thanks.
Before MVD surgery: Slow buildup of pain on left side of my face in my nose and sinus area. Increasing daily over a two week span. Work became secondary. Took a planned two week vacation time just in time for unexpected EXTREME UNRELENTING PAIN, emergency room visits, and a diagnosis of trigeminal neuralgia. Problems tolerating drugs, so eight weeks after diagnosis, went in for MVD surgery. Partial success. Never able to return to work. Pain became chronic; coming and going. Felt like everything from being burned, to sharp pains, freezing, muscle tightness, being run over, crushed bones, but drugs really helped ease pain and antidepressants helped with depression and pain as well.
Pain runs all over the left side of my face at various intensities. Being around crowds and loud noises forces me to retreat home to my nest, the couch.
I was told I have Atypical Odontalgia..I have pain in my lower left canine which can sometimnes be sharp, a dull ache or shooting pains.I have pain in my lower jaw which is either a sore pain or like someone just punched me in the jaw..My gums hurt to touch them. They feel "tight" sometimes like they are being stretched..Other times they throb..Lately I have had eye pain in my left eye..It feels like I have some kind of chemical(like shampoo ) in it..It burns for a couple seconds and goes away....I take Amitriptilyne which does take the pain away..I just recently read that people who have lyme disease often times suffer tooth, jaw and gum pain.(and many OTHER symptoms).Several years ago I was diagnosed with lyme disease from a deer tick found on my arm..I was treated in the ER with antibiotics and a shot of another drug...
Thank you Stephanie for your reply. Your pain sounds incredibly difficult to endure. Wow, so sorry. Good thing the A. drug helps. Lyme disease is something I do not have. Who knows? Anyway, I am having a consultation with a neurosurgeon tomorrow to determine if I am a good candidate for radiosurgery. My pain is quite varied; therefore indescribable, because it is all over the board. So, it is my hope that radiosurgery can narrow the scope, enabling me to have a better quality of life. My greatest fear is that it will broaden the scope. What a pain!
stephanie said:
I was told I have Atypical Odontalgia…I have pain in my lower left canine which can sometimnes be sharp, a dull ache or shooting pains.I have pain in my lower jaw which is either a sore pain or like someone just punched me in the jaw…My gums hurt to touch them. They feel “tight” sometimes like they are being stretched…Other times they throb…Lately I have had eye pain in my left eye…It feels like I have some kind of chemical(like shampoo ) in it…It burns for a couple seconds and goes away…I take Amitriptilyne which does take the pain away…I just recently read that people who have lyme disease often times suffer tooth, jaw and gum pain.(and many OTHER symptoms).Several years ago I was diagnosed with lyme disease from a deer tick found on my arm…I was treated in the ER with antibiotics and a shot of another drug…
My TN pain varies a lot and can be characterised as anything between stabbing, jolting, intense, tickly, tingly, fluttering, icy and sickening.
My ATN pain I would characterise as pressure, burning, tension, plus all those above.
Both can be located everywhere in the face, and the TN also in the ears, teeth, tongue, throat and sometimes even upper chest if a stream of pain moves down my throat.
Triggers are wind, aircon, high and abrupt noise, lights, computer and screen use and socialising (from laughing and smiling).
Thanks Tineline for your description of your pain. I like that you divided it up between type 1and type 2. Then added type one’s to type 2 making it the real bear cat. Oh, and the triggers - they are awful! You are so good at using just a few words to describe gargantuan matter. I hope you don’t mind if I use your descriptions (in part, because my tn pain locations are a bit different than yours) when I talk to a neurosurgeon about some radiosurgery. I will let you know what he tells me.
Tineline said:
My TN pain varies a lot and can be characterised as anything between stabbing, jolting, intense, tickly, tingly, fluttering, icy and sickening.
My ATN pain I would characterise as pressure, burning, tension, plus all those above.
Both can be located everywhere in the face, and the TN also in the ears, teeth, tongue, throat and sometimes even upper chest if a stream of pain moves down my throat.
Triggers are wind, aircon, high and abrupt noise, lights, computer and screen use and socialising (from laughing and smiling).
Not afraid your experience sounds so much like my own. Mine is all on my right, but the description if your pain sensations and triggers are like mine. My triggers are any kind of loud noise, light, air on my face. Right now I'm in my house with a hat on, which seems to help some. Right after my MVD in March my severe nose/eye pain stopped. Prior to the surgery I was being bombarded with lightning bolts to that area. It was like someone took a big spike and was trying to hammer it into the bridge of my nose and right behind my eye. The pain never fully went away but I'm told.by my neurologist and neurosurgeon that with all of the post surgical complications it can take a year or more for everything to resolve. I hope and pray they are right. I get lots of jolts to the face that are increasing in intensity with winter coming. Did your Dr or surgeon try anything else to help you? Do any meds help? I'm sending prayers your way
Notafraid said:
Before MVD surgery: Slow buildup of pain on left side of my face in my nose and sinus area. Increasing daily over a two week span. Work became secondary. Took a planned two week vacation time just in time for unexpected EXTREME UNRELENTING PAIN, emergency room visits, and a diagnosis of trigeminal neuralgia. Problems tolerating drugs, so eight weeks after diagnosis, went in for MVD surgery. Partial success. Never able to return to work. Pain became chronic; coming and going. Felt like everything from being burned, to sharp pains, freezing, muscle tightness, being run over, crushed bones, but drugs really helped ease pain and antidepressants helped with depression and pain as well.
Pain runs all over the left side of my face at various intensities. Being around crowds and loud noises forces me to retreat home to my nest, the couch.
When I don't take meds early it develops into episodic, strongest I've ever experienced in my life, sharp, unbearable pain. Spreads (as lightning) within second. The strongest pain affects one - two branches of the nerve, depends. In the past it started from 3rd branch, now tends to affect mostly 2nd branch. Other side of the face untouched. When things are getting bad, attacks are more frequent and overlapping.
Pain from 1st branch feels like headache (only half of the head in pain).
On the 22of this month, December, I am going in for stereotactic radiosurgery (gamma knife). Expect to get 30 - 60% relief for the type 1 portion of my TN problem. This will not alleviateall my pain, but am hopeful that I can reduce medications to a more manageable level. Also want to become more active. Activity and sharp loud noise, as well as crowds set off my trigeminal nerve, making me prefer the more painfree environment of my home over being with people. I am becoming sedentary and wasted. Time to try something to help me regain my life.
I have ATN and with my worst flairs I could describe it as a migraine in the right side of my face. My teeth felt like I just chewed a bunch of rocks, my gums and side of my tongue were burning, my jaw and cheekbone felt like I got hit with a bat and at times my nostril felt like it had needles in it. Light, wind, an accidental tap, or nothing at allwould send these things off. The constant things were in my mouth and the rest of that side of my face would join in a few times a week. I've been taking clonazepam for about a year now and compared to where I was I hardly notice it now. My mouth always feels weird but it only aches badly occasionally now. I'm very thankful and hope for everyone to find their miracle.
It took me 30 years to finally get an official diagnosis that was backed up by both a pain specialist and a neurologist.
Mine seemed to start after one of two incidents or a combination of both - I was in a car accident and sustained whiplash and then a few years later had dental surgery and the surgeon hit the trigeminal nerve. I lost all feeling in my face and lip on the right side of my face, which has never been fully restored.
In the beginning I had "flares" of pain in the right side of my face that would last as long as six weeks. The pain was so severe so I could not do anything. It felt like my face was going to explode. Every doctor that I went to told me that they didn't know what was wrong. This went on for years and year.
At the age of 39, I developed breast cancer and had chemotherapy and radiation. It seems that shortly after that, my pain became more frequent and lasted longer until it reached the point where it was constant. Mine is a constant aching, throbbing pain that radiates up the side of my face and causes migraines that get so bad, my vision gets blurry. I have pain in my teeth, which seems to be getting worse and I also have constant neck pain but have not found out if it is related. At times, the front of my neck feels sore and the area leading to my ear gets sore. Occasionally, I get ear pain.
When all this started in full force, I went to a new neurologist, who sent me to a pain specialist. He never gave me a diagnosis but he gave me repeated painful cervical injections that he said would relieve the pain. Nothing worked. He finally sent me back to the neurologist. The neurologist told me he thought I must have MS and I had to endure a lumbar puncture - but I only had one band, not multiple and one lesion on my MRI. Ironically, my daughter was diagnosed with MS two years ago. Anyway, he treated me like I was crazy and then my Primary Care doctor put me on narcotics, which helped a little. Two years later, my other daughter was diagnosed with Lupus and I was diagnosed with Connective Tissue Disease and sent to another Pain Specialist. I finally got a diagnosis of TN. We have tried multiple medications, but most of them cause side-effects that my body can't handle. The one thing that worked very well for me was a combination of Lyrica and Topamax but it caused me to be very drowsy. It worked so well that I thought I would be able to wean off of the narcotics. But they decided that due to the drowsiness, I would have to stop the combo because it interfered with my ability to work. So I feel like all they do is throw heavy duty drugs at me. I am now on about 20 scripts each and every day. Probably more info than you needed, I apologize.
I have ATN. It was triggered by eating. I bit into a piece of chicken and had a sharp electric shock like pain go through the right side of my face. After that I had constant teeth pain. It went from one tooth to another. One of the teeth felt like a horrible crushing feeling. The other tooth felt like it was infected times 10. I'm on Tegretol now and it is helping. Then one of my front teeth started to hurt. It is a horrible aching kind of pain. My gums have also felt like they were burning at times. Sometimes the burning is still a breakthrough pain although I take Tegretol now and it is helping. At this point I take 400mg of Tegretol twice a day. I just raised the dose so I am waiting to see if the pain fully subsides in the front tooth. At some point during all this I had an unnecessary root canal before I was diagnosed with ATN.