Hello, Group. I've had the blissful experience of having manageable pain or no pain for the past five months. And I admit, when that happens, I stop checking in. But here I am again, of course, with new pain.
About 90% of my pain has been on the right side. If you asked me to think clearly about when this all began, I will tell you that way back in the very beginning, about six years ago, I started off with some pain on the left. But that quickly turned into giant pain on the right and my left side became my "good" side, my chewing side, my sleeping with my face down to the pillow side.
In the past months I've been experiencing what I believe was gum sensitivity. But for the last week I've been having a persistent, dull ache on the left side. And now, within the last few days, some small zaps, mostly while talking. They feel like they're in one particular tooth. I saw the dentist yesterday, had some xrays and a cleaning (trying to take care of my teeth when I can). They saw nothing that indicated a tooth problem but did note that I haven't been flossing well (I'm terrified to floss when I'm flaring) and that my gums were indeed inflamed in the area with the pain. The dentist thought that there might have been something stuck between two teeth that caused some swelling and thought that was the problem.
But I just woke up to a zap of pain where my face was pressed down on the pillow, and I'm pretty sure it's not feeling like gum pain anymore. Of course, I just saw the dentist yesterday. Could be the inflammation is still coming down. But man, I have that sickening feeling in my stomach that's telling me that just when I thought I knew what to expect from my TN, bam, something new and really unpleasant to deal with.
Can anyone with bilateral pain share thoughts on how theirs began? I've read the archives but it's always nice to get new info.
I know we all deal with what we get dealt, but life is feeling extra unfair today.
Hi Zapgirl,
I have bilateral TN mine did not begin until after I had MVD on the left18 months ago. My right side started July 2012 and was diagnosed thus Jan 2103. Awaiting to reschedule surgery date.
Where it was caught so early maybe better chance of full pain recovery this time. All I can do is pray, but definetly worth the try. Good luck to you!
My Best
I started with TN1 on my right side, after about 2-3 months it slowly started on the left.
At first it was so light that I doubted I felt it, within a few days there was no denying what it was. Both sides went into remission at the same time.
2010 right side TN1 returned, 2012 left side came back, started as a slow ache, burning and gradually got worse and worse, TN2.
I’ve never felt both sides at the same time, it’s only one side at a time.
Sometimes we doubt what we feel, or it seems like a referred pain from the original side.
But in time it will let you know what it is…or just go away.
Hey, Mimi. First, I couldn't possibly reply to you without saying how happy I am that you moved forward with your surgery. I hope, hope, hope that the outcome is a great one.
I appreciate your reply. It's been a scary few days. But right now, I'm going with my dentist's theory that I had something irritating my gums on the left. I wish I could stop brushing my teeth altogether, just leave them in peace. But instead, I'm going gangbusters, trying to keep them clean and healthy, although very carefully. I read a post once where someone wished that he could have all his teeth removed so he didn't have to deal with them. I guess I'm starting to understand that feeling.
I am also hanging onto your comment that you never had both sides at once. I hope, if it ever does move to the left side, that my right side gets a break. What a small but wonderful silver lining that could be. I haven't chewed any food on the right side in a year now.
I have bilateral TN1 and TN2. For the last 4 years, I only had pain on my right side but last fall I started to get twinges on my left. Eventually the twinges turned into major shocks. Just like Mimi, I have never had shocks on both sides at the same time but I have had aching, throbbing on both sides.
As far as the tooth pain, I have two suggestions. First, I have started using toothpaste for sensitive teeth. It doesn't completely take the pain away but it does help. Also, I brush my teeth with warm, sometimes hot water because it is soothing and cold water really hurts.
I am definitely in favor of doing what you can to keep your teeth healthy even if it causes some pain. I didn't go to the dentist or brush my teeth daily because of the pain for a few years after this pain started. Then I finally went to the dentist and I had periodontal disease. They had to do this"scaling" of my gums where they have to clean under my gums. Even though they numb you it is like torture for people like us. Now I go to the dentist/dentist regularly and I have found a great one who is very understanding about my TN and even numbs me even when I just have a cleaning.
Hope this helps. Hoping for pain-free or at least "less-pain" days for you!
Hi! I haven’t been on this great support network for awhile now but felt the need for others who know the pain - it is a lonely pain that is hard to describe to those who don’t have it. I haven’t updated my profile lately but I will. I just wanted you to know that after about 25 doctors I finally found one that cared and had an answer. I have been diagnosed with bilateral TN which a lot of doctors around here don’t even acknowledge as being a real thing. Anyhow, my pain was both sides of my face from forehead, cheeks, and teeth and I do have scalp as well. The pain is 24-7 burning, broken bone feeling, throbbing, ect. I have tried every med in the book and a high dose of anticonvulsants had been my best option but the side effects were just killing me!!! The dr I have found now is doing lidocaine infusions for me and it has allowed me to decrease gabapentin from 4800mg to 600-1200mg a day along with a few other meds but in my case, the lidocaine numbs the nerves that are causing the pain. This treatment can also work for phantom nerve pain and fibromyalgia - the problem is finding a dr that will actually do this procedure. I fly to Michigan for my treatments. I can give you more info if you would like it. I am so glad I checked this website today - it’s such a great support!!!
Hi. I wanted to let you know that I looked everywhere online and actually found my dr. by another gal who had similar pain on this forum. Anyway, his name is Dr. Ken Casey and if you just google his name, you can find his website and he is a neurosurgeon located close to Detroit. He is very specialized and I started by emailing him my story and he was very good about giving me his honest opinion and said he would not have encouraged me to come out there if he didn’t think he could help me. I have had terrible luck with any neurologists around the tristate area so don’t give up! I don’t know if I will ever be cured but a reduction in pain is so much more promising!