I'm new to this site, but was diagnosed with TN about 2 years ago although minor symptoms began 5 years ago. I didn't start meds until a year ago and was put on gabapentin. I have just a couple of questions that my doctor has not been able to answer.
1. is it common for the pain to move around during an episode? Sometimes the pain travels up the side of my nose through my eye and then a week later it runs across my cheek. And so on. And sometimes I get the burning after a stab and sometimes not.
2. The first time I was on Gabpentin the pain did not subside at all, or at least it didn't feel like it did. My dr. just kept increasing my dose til I was up to 2 700 mg and after 6 month the pain diminished on it's own. This time it seemed as though it worked some. I was up to 2400 and was just getting the burning, tingling, not the sharp jabs. I just couldn't sleep on my one side because my face was so sensitive. I'm now into the 6th week of this attack and the sharp pains have come back.
Any suggestions as to what I should do? When I upped the gabapentin to 2700 I got dizzy and got very sensitive to anything anyone said to me...and not pleasant about it. It's 4 in the morning and can't sleep because of pain
3 any suggestions for drs. in the central PA area? I heard a dr. in the Hershey area was good, but didn't get his name.
Thanks so much for any help.
1. Yes, it's common for trigger zones and pain centers to "move around" in the face. It's one of the crazy-making characteristics of facial neuralgia. The burning component of your pain is also fairly common, though perhaps not as much so as the lightning-strike "Classic" or "Type 1" TN pain.
2. Like other anti-seizure meds used off-label for chronic neuropathic pain, Neurontin takes time to build up in the blood stream. Although there is a lot of variation between patients, your experience seems to parallel my wife's: she describes Neurontin as "taking the tip off the iceberg" of her pain, but never completely eradicating it. There are several alternative medications, each with their potential side effects. Right now, the International Association for the Study of Pain has listed Carbamazepine (Tegretol), and Oxcarbazepine (Trileptal) as among those. Talk with your doctor about a trial of one of the alternatives, either in replacement of Neurontin or as part of a pain cocktail.
3. You might find that you need to travel in order to consult with a neurologist who treats a lot of face pain patients and has appropriate recent training. At least two hospitals in Pittsburgh have physicians on staff who were trained by Dr. Peter Janetta -- one of the most widely known neurosurgeons who worked with TN patients. One of them is Allegheny General Hospital.
This site once had a listing of over 300 US and overseas doctors under a "Doctors" tab on the menu above. But that's been taken down by the new Ben's Friends advisory board, pending a review of all site information materials. There is still a sub-tab under Doctor Appointment, with a link to the Ben's Friends doctor database, and that may be a place to start. If you don't find what you need there, then I can do a Google search for you on the "Top Doctors" listings for PA in Neurology. US News and World Report publishes a list of over 50,000 top-rated doctors every year, including a few who are specialized in this area of practice.
For your own protection, be aware that although I am a technically trained layman and have read the medical literature and supported face pain patients for over 19 years, I am not a licensed medical doctor. You need to be advised by someone who is, and who has serious credentials in facial neuralgia.
Thanks for the information Red.
Yes the pain can travel. I have bilateral ATN in all three branches. It can be in a tooth one minute and on the other side of my nose the next. Some sensations last a second and some last for days and even weeks. I have one tooth that hurts every single day. And the sensations themselves differ too. From annoying to excruciating--a zing, a poke, a bolt, deep burning, crushing pain, high pitched vibrating pain, like I have been punched in the face, tingling, numbness, twitching. The list goes on and on!
It sounds like you have symptoms of Type 1 and Type 2. If your med is working for the zaps that is awesome but you may need a different med to address the lasting pain and burning. Tricyclic anti-depressants work very well for some people with Type 2 pain. I am on Nortriptyline. And there are some meds that may work better for both.
As for finding a dr you can look at the top of the page under Docs and see if there is anyone near you. Or you may want to join a facebook group like Trigeminal Neuralgia Support and ask on there. Those groups are incredibly active. I am glad you are searching for a DR. That is so important. It took me a year and a half to find a neuro that really understands TN and he has made all the difference in my treatment.
My pain moves during an episode sometimes too. If you look at one of the side effects of gabapentin, it can increase depression or cause you to become depressed. It can also cause balance issues, speech and memory issues and so forth.
The only thing that has worked for the burning, boring pain I have is nortryptiline. You may want to talk to your doctor about whether or not that is appropriate for you. I am not a doctor, I can only tell you what worked for me and I did hear about the benefits of the medication here. The side benefit of it is you take it at night and for some people, it makes you drowsy.
Gabapentin has never been effective for me. I had success with trileptal. There are a lot of other options out there and really medication for this condition is a trial and error process. I, like you, experienced remission. The first time I the neuro had me on gabapentin and trileptal. This time I am on nortryptiline with oxycodone for breakthrough pain.
Under the doctors appointment tabs up above is a list of doctors nationwide who treat TN.
I wish you luck. And we are hear to talk to when you need us.
I think I need a new neurologist because all he does is up the gabapentin whenever I ask him a question. Do you know if it is best to go with a neurologist or a pain specialist?
June, Either a neurologist or pain management specialist may be able to help you. But from what I hear from patients, you might do better with someone who routinely treats facial neuralgia patients and/or has recent and specifically focused graduate training in their field. These are questions you can ask a physician during an initial interview.
I wish you well,
I agree with Red. Someone who has experience in treating TN and facial pain. That is not an easy person to find. You need to research and ask around. And you will probably need to travel. My Dr is two hours away and I would gladly travel further. The majority of Drs do not have much (if any knowledge) of TN and there many outdated beliefs and stereotypes. You need to become your own best advocate and your own specialist too.
Have you tried Tegretol? It is working well for me, and it is the first med docs usually try for TN.
I ve just recently been diagnosed with TN and have had some terrible days. Started off with Lyrica, trhen Gaba, then finally got to a neurologist who prescribed Oxcarbazepine. At first I was drowsy and felt no effect. However within a couple of days it really suppressed the sharp pains. I am still only at 300 mg ( 3 weeks now) and can go to 600 if the pain increases. I retain some sensitivity in my teeth and a fullness in my ear but those are quite bearable compared to the alternative. The drowsiness is gone as well.
My neurolgist claims this drug (Oxcarb) has an 88% success rate and has fewer side effects than the Carbamazepine. The Striking Back book says the same but did not have this success rate figure.
I strongly suggest you see a neurologist. My family MD was guessing with the other drugs.
Hope you have pain free Thanksgiving. Once you've gone through TN you are thankful for every pain free day!