Well, here we go again! I really need to vent. OUCH!!! I am sparking continuously and have been for about a week now. I am so exhausted and the depression is setting in at an alarming pace. I am currently only taking Neurontin and have increased my dosage to try to get the pain under control, but cannot get a handle on it.
I need to head to the neurologist, but just got new insurance and my new card is not here yet. I was doing so well the last couple of years and was able to get off Tegretol. A low dose of Neurontin was keeping me totally pain free or I was in a long remission. I have not been in this much pain sine right before my MVD surgery in 2009.
Thank you for letting me vent!
I hope that you are doing much better now than when you posted the above message.
Thanks for responding about my diagnosis. My neurologist feels that since the pain I have is sporadic and not constant, that taking meds right now wouldn't prove anything, I guess.
Since he said that, it seems like my pain has ramped up and nearly is continuous now. The tooth pain used to go away for hours or days but for the past few days it's been all day and even bothers me at night. I haven't had any excruciating pain, it's mostly annoying. But I fear the worst is coming and I can't relax. My blood pressure spikes whenever I feel a pain.
I just hope I'm one of the people who can tolerate the meds and find the meds helpful if/when it gets to that point.
My pains are NOT electrical and I hope they never are. Do you have electrical shocks in your teeth? How do you handle it if your meds aren't working so well?
Thanks for listening. I needed to vent because I'm really very nervous and scared right now.
Jasmine,
Not much relief yet, but still holding on. One of the most frustrating things with classic TN is that it is by nature sporadic. When I say that my pain is constant, it means when stimulated if that makes since. For example I do not feel any pain at this moment because I am not moving my mouth, but when I lick my lips I will get a “jolt” of pain in the front section of my teeth on the right side of my face and the right side of my top lip feels kind of like it is coming out of being asleep. That tingling feeling coupled with the pain in my teeth is the “electric” shock l refer to.
That shock happens every time I lick my lips, brush my teeth, wash my face, dry my face, eat, and sometimes when talking. It has to be stimulated. Some people can have what I am referring to in addition to a constant burning sensation, but I do not have the burning so that is why my condition is known as Classic TN.
Until I can get to the doctor this week, I just take my Neurontin, keep a lot of lip balm on to keep me from licking my lips and try to keep my mouth very still. Eating is a real challenge so I eat soft stuff when I am really hungry because my mouth will surge with pain when I bite down on something or chew.
The only meds that have worked on this pain in the past are Tegretol sometimes taken with Neurontin and Baclofen (a muscle relaxer). The greatest gift is when I go into remission! That period can be for a day, weeks, months or years. After a 2 year remission, one can forget how awful and tiring the pain is.
I hope your pain subsides soon!
Thanks for the explanation of your pain. It sounds awful. I guess I'm lucky that so far the tooth pain I have ranges from a dull ache to stabbing/jabs of needle-like pain. The pain travels from tooth to tooth, both upper and lower and it can be an ache in one and a jab in another.
Tonight when I ate dinner I felt a different sensation, not sure what. I was hoping it was just my imagination. But today has been a pretty low pain day for me. I hope it lasts through tonight. I finally was able to sleep well last night.
It feels so good to be able to share with others on this site. My husband refuses to acknowledge that I might have TN; this morning he told me he won't believe it until the doctor says so and that I have myself convinced that I have it, blah, blah, blah. He probably thinks I'm imagining all my symptoms.
Thanks again for your help. I hope that you have a no-pain day soon.
Jasmine, I am so glad you were finally able to get some sleep. I have found that TN pain is so exhausting! It must really be hard to fight this and your husband at the same time. There are a lot of people that have had to diagnose themselves. I am one of them. My diagnosis was finally confirmed when I contacted Dr. Ben Carson’s office at Johns Hopkins.
I happy that we are all on this site as well. No one understands like a fellow sufferer! Hope you continue to have low to no pain!