I have pain on both sides of my face. It started nearly 2 years ago. It started with ear aches - stabbing in my left ear and teeth pain on my left side ....moved from top to lower jaw. In the beginning I had nasal swelling, irritation and pain (may have been the onset of the shingles symptoms.) Sometimes ears and teeth at the same time. It leaves a dull pain most of the time, but with stress/tiredness it becomes sharper and sharper. Sometimes feels like I have ice pics stabbing my ear. Then about 1 1/2 years ago it started on the right side also; not as bad, but there. It can be just on the right side, ear or teeth or both. The left side has always been the most intense and worse. I can have it on both sides at the same time....then I want to just check out!
I've been to the Neurologist, had all of the MRI's - scans - blood work. The Neurologist says that it appears to have started with the Herpes Zoster Virus -- like having shingles in the trigeminal nerve. He started me on various - typical meds...I'm allergic to most of the anti-seizure meds...we worked our way down to Neurontin and then to try to control the pain, we worked our way up in dosage. One day at the stop light, I realized I was slowly drifting through the light, not being aware that my foot was not on the brake....against my Dr. advise, I took myself off the neurontin. I was treated with the anti-viral meds - no relief. I have put myself on naturopatic anti viral pills to build up the immune system (believe that they have assisted in keeping down the inflamation which reduces the pain impact.) My Neurologist would gladly refer me to CA for the surgery, but logically, I don't see where it could relieve anything....the damage could be worse; especially with both sides. I struggle with exterior noise, commotion, some base music or high tones are excrutiating. I back my way out of audiences, music filled rooms, loud TV...anything where there is multi-sources of noise.
I choose to be alert and aware and alive and not drugged. I've had to deal with chronic back pain and medications just don't work for me. The lose and damage to other body systems with the pain pills just isn't negotiable for me.
I have had some relief from accupuncture and chiropratic adjustments from one practictioner...not all.
Pressure points can give me relief for moments....I've learned how to self administer some of these skills.
Meditaion and prayer; bio-feedback techniques have empowered me with some control; but it's getting worse. Mind over matter....keeping busy and not letting the pain control me -- pure stubborn determination. Some days, I can't hold it together and think about whether there is any light at the end of this tunnel..then I look at my grandchildren pictures, pick myself up and move. I turn my attention to the positive love of God, my Faith, my Family, and all that I love around me. That keeps my heart beating for the next day!
Tegretol, which is an anti-seizure medication, is very good at controlling attacks. Pain meds have done nothing for me. Even very serious ones at high dosage! But the anti-seizure medication has, on several occasions, saved my life and daily doses have so far saved me from further attacks (so long as I don't aggravate my face in any way.
HI Bonnie - I hope you read this.
You said: I choose to be alert and aware and alive and not drugged. I've had to deal with chronic back pain and medications just don't work for me. The lose and damage to other body systems with the pain pills just isn't negotiable for me.
Although I do not dispute that I do have Atypical Facial Pain, I also have chosen your "medication" or lack thereof route, as I cannot tolerate neurontin. I am wondering if you wouldn't benefit from seeing a TMJ * specialist* if you haven't already. I have had TMD for many many many years, long before the unfortunate accident 1.5 yrs ago that triggered the ATN. However, I am wondering if a TMJ workup and perhaps a splint from a specialist such as my doc, Dr. Art Parker in Portland, Oregon, would help. Many of the symptoms are identical. I recently had my night splint readjusted after a dental implant and a nearly 3 month AFP pain cycle (spent in bed with prayer and hot packs and even pastoral visits) and noticed that my overall pain symptoms decreased
Have a peaceful day. Kay
Thank you for your insight, Kay,
I have gone through all of the dental considerations in the beginning of trying to get diagnosed. I've seen the Dental specialist, Oral Surgeons, ENT Dr, ...thus the x-rays and MRI's with blood work up was the final straw to diagnoses.
Onward and upward....the more I learn about the tri-geminal neuralgia is that it is more atypical then typical....the similarities are that the tri-geminal nerve route is affected, thus the locations of the pain. Even in that route, the types of pain vary uniquicely from person to person.
Consulting with one another is good; builds insight and awareness to the diversity of this culprit.
Sincerely,
b
baxter8it said:
HI Bonnie - I hope you read this.
You said: I choose to be alert and aware and alive and not drugged. I've had to deal with chronic back pain and medications just don't work for me. The lose and damage to other body systems with the pain pills just isn't negotiable for me.
Although I do not dispute that I do have Atypical Facial Pain, I also have chosen your "medication" or lack thereof route, as I cannot tolerate neurontin. I am wondering if you wouldn't benefit from seeing a TMJ * specialist* if you haven't already. I have had TMD for many many many years, long before the unfortunate accident 1.5 yrs ago that triggered the ATN. However, I am wondering if a TMJ workup and perhaps a splint from a specialist such as my doc, Dr. Art Parker in Portland, Oregon, would help. Many of the symptoms are identical. I recently had my night splint readjusted after a dental implant and a nearly 3 month AFP pain cycle (spent in bed with prayer and hot packs and even pastoral visits) and noticed that my overall pain symptoms decreased
Have a peaceful day. Kay
Oh Good, Bonnie. I am not a facebooker or an internet poster, but I was concerned when I read Red's note about bilateral TN. Mine manifests itself as a burning charcoal right on the cheekbone and then extends along the upper jaw ridge just on my teeth. I will get cold sores when it's particularly bad and resort to warm salt water rinses. Have you tried the topical cream that many of us use? I have a 10% neurontin/5% lidocaine that I can tolerate. I have even had neurontin compounded at just 25mg but that caused severe severe side effects (similar to a seizure). I have been to several acupuncturists and they will help the TMJ, but not the AFP.
KR
Bonnie said:
baxter8it said:
HI Bonnie - I hope you read this.
You said: I choose to be alert and aware and alive and not drugged. I've had to deal with chronic back pain and medications just don't work for me. The lose and damage to other body systems with the pain pills just isn't negotiable for me.
Although I do not dispute that I do have Atypical Facial Pain, I also have chosen your "medication" or lack thereof route, as I cannot tolerate neurontin. I am wondering if you wouldn't benefit from seeing a TMJ * specialist* if you haven't already. I have had TMD for many many many years, long before the unfortunate accident 1.5 yrs ago that triggered the ATN. However, I am wondering if a TMJ workup and perhaps a splint from a specialist such as my doc, Dr. Art Parker in Portland, Oregon, would help. Many of the symptoms are identical. I recently had my night splint readjusted after a dental implant and a nearly 3 month AFP pain cycle (spent in bed with prayer and hot packs and even pastoral visits) and noticed that my overall pain symptoms decreased
Have a peaceful day. Kay