I want to write a short explanation of what's going on medically over the last couple weeks and years to help me figure out what might be an appropriate course of action from this point. Before I begin it's important to note that I am extremely healthy. No allergies or diseases. In fact I can count on one hand the number of times I have seen a doctor who wasn't an OBGYN in the last 14 years. I catch a cold or flu once every other year, have a history of migraines that I control with over the counter medication and by going straight to bed when I feel one coming on. I am overweight but my blood pressure and cholesterol levels are both normal.
About 3 years ago I had a crown put on a lower tooth with no root canal. About 2 weeks later I went back to the dentist for pain in my teeth thinking I needed a root canal on that tooth. I couldn't pinpoint which tooth or even whether the pain was on the top or bottom. After taking additional xrays (which did not indicate a root canal needed to be done on any tooth) and tapping on each tooth (with no pain response) the dentist said my bite after the root canal might be a little high and he shaved and ground down some teeth. The pain went away the next day. He explained that teeth move around in your mouth more than people realize. Since then maybe 3-4 times a year I have had one or two days of pain. Its always on the right side and in my back 3-4 molars and both jaws. The pain would last only a day or two at most. I would complain to my husband that my teeth were killing me and he would get mad I wasn't going to the dentist but the pain always went away within a day or two and I assumed my teeth had moved into a high position and then moved back when the pain went away.
Starting on about October 10th the pain returned. The pain was sharp and jolting in my teeth with a kind of constant ache in my jaw. Sometimes it was on my top jaw and sometimes it was on bottom. The pain didn't respond to any painkillers I had, including Vicodin from the birth of my last baby over a year ago. I had minimal relief using ibuprofen. Sleeping at night was difficult because the pain seemed to intensify when I laid down.
By Tuesday I decided I needed to go to the dentist. The pain was much more intense than before and I was certain I needed a root canal. After reviewing new xrays the dentist said the same thing he said 3 years ago. He suggested maybe I had a sinus infection even though I didn't really have symptoms. My pain by this point was almost unbearable. I was not sleeping at night and it felt like I was being zinged at the dentist office in multiple teeth on my right side all night long. The next day I found it nearly impossible to find a doctor as I was a new patient (due to how healthy I wad I didn't have a primary care physician and haven't seen one in at least 5 years). Finally I found one who could see me in a timely manner.
I am the taxi driver, I mean Mom, to 6 young kids at home plus a full time Realtor. I put 30k miles a year on my car. The pain seemed to intensify to unbearable points at four times; during the night or anytime I laid down, when the kids started yelling or the baby was crying or any loud shocking noises, when I ate, and when I was driving. I was having to pull over in tears or sobbing at night because the pain was worse than anything I had ever felt. The episodes would last from a few seconds to more than 10 minutes only to reside and then build up again. It felt like a mixture of a brain freeze and needing a root canal in 3 or 4 teeth all at the same time. Sometimes it was a sharp ache in my jaw. But I did have complete times with zero pain.
After an exam the doctor said he did see some inflammation in my nasal cavity that could indicate a sinus infection but that was on the left side (not the right side where I was feeling pain) He diagnosed my with Trigeminal Neuralgia and prescribed neurontin, flonase, and amoxicillian. He ordered some basic blood work and a nasal cavity xray.
After going home and reading up on Trigeminal Neuralgia I decided to take the Neurontin despite my feeling that this might not be the correct diagnosis and my sinus infection could be causing the pain. I began taking the neurontin and noticed an immediate change. I was on 300mg and could take them 3 times a day. The pain was more bearable like a dull ache with a sharp increase in pain few times a day (mostly when I got in the car to drive). There were periods of hours when I had no pain whatsoever. I began to try to avoid activities that would exacerbate it and realized there were multiple days I had not eaten anything all day until late afternoon or had avoided brushing my teeth all day. I quit wearing makeup completely because when I put my face makeup or blush on I experienced 20 mintues of waves of pain right after.
On Tuesday the 22nd I went to see an oral surgeon for a second opinion. He did an exam to rule our TMJ and took another xray of my full head with an icat machine. He found I did not have TMJ and could see no boney tumors or other reasons I should be feeling the pain. He also felt I had never had a sinus infection as he saw no thickening of the membranes and no evidence of any congestion in either sinus cavity. At his suggestion I have an appt for this Monday to get fitted for a night guard in case clenching or grinding was causing the pain. He also suggested an MRI at some point because his machine could not see soft tissue pollups or blood vessels if this was Trigeminal Neuralgia.
My prayers were answered yesterday, Oct 25th, when the pain went away. As suddenly as it had appeared it was just gone. I still have a slight ache in my jaw (similar to the feeling you get after working out too much) but haven't taken the neurontin since yesterday morning and have only had one episode of pain since yesterday.
With 6 small children relying on me to be a healthy and functioning mom I just want to make sure all my bases are covered and I am aggressive on getting answers. I am thinking since I don't have pain now that it will be hard to get a referral for a Neurologist. My dad who was recently diagnosed with Cancer desperately wants me to get an MRI. After reading these stories about how long it took anyone with this to get answers I feel a little like I cheated if in fact this is what I have to have gotten an answer so quickly. These are my questions....
1. Do you feel that I actually have this or do you think it could still be something else? I had some heat sensitivity in my teeth the last two days of pain and this is more indicative of needing a root canal from what I can gather. That being said after reading these horror stories I am terrified to get one done. I am still hoping against all hope this is NOT what I have.
2. Would you push to have the MRI done? I don't have good insurance and will be paying out of pocket for it. Would you wait until the pain comes back? If it is a blood vessel pushing on the nerve and I don't have pain now, I will assume that the blood vessel won't be pushing on it.
3. Would you have the work done? My dentist did mention I have cross bite and thought that could be putting undue pressure on my nerve. He can crown all four of my upper teeth to get me out of cross-bite, Again I am so nervous to have any work done that I am not sure this is the best option.
4. If my primary care doctor won't refer me to a Neurologist is there a way to get in to see one without a referral? Again cost is a factor as I only have catastrophic insurance and will be paying out of pocket. I used my drug benefit for the first time to get the Neurontin since I got the insurance two years ago.
Any advice is appreciated.
Amber
). I was wondering myself if people stay on the drugs when they are in remission? I know you mention to keep taking the drugs but I read somewhere they lose their efficacy over time somewhere. I am very young (37) to be using up the Usefullness of the drug now. Do most neurologists suggest staying on it? The doctor who prescribed it to me was more like “take it when you need it”. I guess two things concern me that I read…tumor and ms. I am not sure if mri would show these things since I am in such the beginning stages maybe I should just wait on the mri.
I dont want to be in denial but I dont want to overlook something thats an actual fix eaither. I will push my md for a referral to neurologist.