Hi! I was diagnosed about 4 months ago. I have had the pain for about 3 years, didn't know what it was until the really bad pain hit and I stumbled into the right ER doc.
Anyway, I take Carbamazapine 200 MG twice daily. From what I am reading that is a low dose. At first I was taking half tab twice daily and I had a couple months pain free. It was glorious. Now they won't increase my dose cause I am still breastfeeding by baby. So they referred me to neuro doc that I can't get in to until Nov. 18th. Pain is everyday now. 4-5/10 most days, some days worse, some days better. Its exhausting, as you all probably know.
I have written down all the different meds on here and am taking that list with me to my doc appt. on Tues to see if any of them are safe for breastfeeding with. I am in process of weaning, so hopefully within the next couple months I will be able to try anything.
Has anyone been in similar situation?
ALSO.....my pain areas change.....it travels around it seems. Used to be mostly in the teeth/jaw and cheekbone. Now its in my ear and my nose and down to my neck, under my jaw. Its just the strangest thing to deal with. Its on my left side and sometimes I feel like it is mirroring to my Right side (maybe my imagination?) and I am pretty sure its TN2. Its constant pain with short periods of relief.
Thanks for any insight/thoughts. I appreciate finding this group and have found many helpful things so far.
Sorry you have to join us, but I am glad you are here. I am a 25 year old, left TN2 person. My pain "travels" too, and I can relate to the pains mimicking on the right. I usually chalk it up to muscle tension and try to rub it out, but I have been too afraid to bring it up at a doctor. I am tired of getting the "you must be making this up" look and patronizing comments. Maybe if I find a Neuro I trust.
I don't know much about the breast feeding problems, but I know there is a section of the info tab specifically about pregnancy and drugs. If you haven't looked yet I would start there.
The constant or near constant pain is terrible and I was severely sleep deprived because of it. I wasted 4 months for a diagnosos and another 7 months to find a medication that worked without making me sicker on side effects. I finally found Nortypliline (sorry for any bad spelling) It is an anti depressant and blocks the pain fairly effectively, 2 things I desperately needed after the last year.
Maybe it was a discussion I saw, any way, here is a list of forum questions that talked about it, my memory is...shall we say lacking? these days, I will keep looking for what I was thinking of. http://www.livingwithtn.org/forum/topic/search?q=breast+feeding
I feel a strange mix of relief and excitement every time someone here knows what I am talking about, and then I feel giulty because I know how much this sucks. :)
I understand that the Face Pain Info tab has been taken down by the Ben's Friends Advisory Board, pending a review of all site materials. I'm not aware of their projected schedule. That being said, I retain record copies of the materials that were represented in that tab. If anyone would like to look through the information, please send me a note at ■■■■■■■■■■■■■■■■■■■ and I'll send them along. There are about 30 short articles. A briefer but authoritative overview of TN is provided at the US National Institutes of Neurological Disorder and Stroke, at http://www.ninds.nih.gov/disorders/trigeminal_neuralgia/detail_trigeminal_neuralgia.htm. Fair disclosure: I wrote the most recent version and coordinated external professional review before NINDS published it.
Concerning breast feeding while on Tegretol, I might suggest that you contact the Patient Representative at the US Face Pain Association. They also have materials on medical risks for pregnant women. This is their contact information: http://fpa-support.org/contact-us/
This being said, the patterns of pain that you describe seem to match up with more than one potential pain disorder. Pain in your ear might turn out to be geniculate neuralgia (or even an ear infection) or TMJ -- you'll need to be examined to determine the cause.The "constant" pain with brief periods of relief seems to track better to what patients report when their diagnosis is "TN Type 2" or "Atypical" TN. Likewise, although it is less common than even the relatively rare TN pain in one side, bilateral pain does occur in some patients, very often with the shifting areas of sensitivity (aka "trigger zones") that you've described.
For your own protection be aware that although I am a technically trained medical layman with nearly 20 years reading and patient contact experience, I am not a licensed medical doctor. Anything you hear from me should be validated against the experience of a medical professional.
If your pain is changing, I would be wary of anybody telling you it is due to microvascular compression (MVC). This at best, would likely give you a continuous symptom pattern due to the nerve fibres being compressed, or certainly in the same area with varying degrees of pain. You mention neck symptoms, did you know the trigeminal nerve complex extends to the neck? It can cause facial pain, and if you have neck pain you should probably have it investigated.
hello joanna314, welcome to the community. you are on the right path by researching meds.
i would encourage you to read the book Striking Back. it talks about the symptoms, medications used and their side effects, surgical options and shares a few personal stories of tn. i have taken the book with me to appts so i can understand the medications and dosages being discussed. my husband ordered it off of Amazon.
i wish you peace on this journey and pray you will have many pain free days ahead.