I was admitted to hospital a few days ago for pain control. I couldn’t stand it anymore.
I was on morphine which took some of the sharpness away. They now have me on 400mg
Tegretol, 900mg gabapentin, 200mg Lyrica and 50mg indomethacin twice a day. It’s a lot
Of meds to be on and that concerns me. I think I’m going to talk to my neuro about surgery.
Any thoughts? I’m scared and have no idea why I have this disorder.
Heather,
I hope this email finds you feeling better. I am not sure of how long you have had TN and how you were diagnosed. Have you had MRIs and has there been identification of any nerve compression? I think we all question why we have TN. If you have watched any of the videos, a large percentage of us can track the origin to some dental procedure. I have talked to several neurologists: some treat TN as a rare disease, and at least one told me TN is quite common and he sees hundreds of new patients each year. However, he had very few answers. His approach was to try all the medications and then move on to surgery. You are taking a lot of meds, but that can change. Most of us have found the right "cocktail" to control the pain for part of the time. I take more meds in the cold weather. I used to ignore the warning twinges, but now I jump on the extra meds if I suspect the pain will break through. It seems we all experience setbacks. Sounds to me as if you have a neuro who is willing to step in and help since you were admitted and treated instead of reported for drug addiction.
You mentioned surgery---is this something your neuro recommends? Sorry for all the questions, when you want answers. I am lucky in that I have not reached the level of pain you are experiencing. I would be scared, too. There are members on this site who have had MVD surgery as well as Gamma Knife. I hope they will provide some assistance. The sites for Mayo Clinic, Tufts, FPA and Mass General are great resources.
Keep us posted on your progress. We will be thinking of you.
Mary
Thanks for the responses and well wishes <3 I’ve had this for 5 years and it started out with Sharp reinvest when I bite down and has progressed to this. I’ve had mri’s that are clear and no compression of the trigeminal nerve. I had a spinal tap on Wednesday and waiting on results to rule out ms. It seems to me that the doctors don’t see many tn patients around here. I’m so glad I found this site and I’m looking forward to making new friends and also supporting others.
Heather, keep talking to us. We will wish for a positive outcome. Also keep in mind that compressions do not always show up on the MRIs. There is a type of MRI called SISS-FIESTA that provides a closer 3D image. Don't know if you have had one. Finding a doctor is a trial no matter where you live. As one told me, "you have it, learn to live with it." Yeah, right. Hope you are better very soon.
Mary
I have had a rhizotomy a MVD and gamma knife radiation. For me gamma knife worked the best. It has been a year since gamma knife and my pain has come back. I am very determined to beat this. I just got back from Pittsburgh because I was told that is the best place to go. I did not get the best news but if I can give you any advise it is to make sure surgery can help you because the número surgeon in Pitt told me procedures can cause more damage if you don’t have type 1 tn…hang in there I know how hard this is…
Hi Heather
You know we are all rooting for you. You're receiving great feedback from the group. Living with TN provides extraordinary support. Check out Marymo's MRI suggestion. I recall Red posting very informative info regarding different types of MRI. Go to the search box in the upper right corner of the page and see what you can find. Stay in touch. You are in our Hearts.