Hi
I have just found this board whilst researching MVD surgery. I have had symptoms since I was 15 and got diagnosed at 21. I have tried pretty much all medications balloon compressions my lasting local anesthic injected into my head and local anesthic patches to no help.
I’m looking for advice around asking for surgery and to meet people who are the same age as me suffering with facial pain issues
Welcome to the group Kimmy,
I know there are some younger people on the site so I hope you are able to connect with them as you are hoping to. I am not one of them:) I see that you are living in the United Kingdom and just wonder if there are any other medications that may be available to you that might help.
If your doctor has confirmed that you are suffering from nerve pain, perhaps something like Topamax or even Lyrica could be beneficial, if it is available to you. Topamax is an older drug and very inexpensive and I find it very helpful. Lyrica is newer and very expensive.
I wish you the best of luck!
Cathy In MD
Kimmy, You may want to start with our Face Pain Info tab in the menu above. There's a lot there on both diagnosis and treatment for the two general types of neurological facial pain (typical and atypical TN, the latter also called "trigeminal neuropathic pain"). Balloon compression regrettably has one of the less reliable records of success in dealing with typical TN. MVD might be an option at this point, though likelihood of success is generally lower after an earlier procedure and where most pain is dominated by constant burning or throbbing pain.
The primary drugs used in typical TN are Carbamazepine (Tegretol), Oxcarabazepine (Trileptal) and Gabapentin (Neurontin). If pain is neuropathic in character, the primary meds are in the tricyclic antidepressant family (Amitriptyline, Nortriptyline, 8-10 others). Either may be supplemented in a drug cocktail by a low dose muscle relaxant like Flexeril, or an anti-spasmodic agent like Baclofen. There are over 70 known combinations of meds in the atypical variant of TN, and they pretty much have to be tried one at a time, because there is no useful predictive measure for which will work with a given patient.
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst and Moderator, LWTN
Hello Kimmy,
I am 25 and have only dealt with this for 10 months. There is a group called For TN Patients in Their 20s, I joined it a few weeks ago, and even if no one is actively in in it I enjoyed reading others posts. Good luck!
-Erika