Trigeminal Neuralgia Support Group

Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.

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Brain & Nervous System
/ Trigeminal Neuralgia Support Group

Looking for some advice, scared and confused.

lily1216
lily1216

I am a 25 year old who was diagnosed with trigeminal neuralgia a week and a half ago since then my body has given out entirely I can barely walk and the pain in my face comes and goes but is absolutely excruciating. I was diagnosed with permanent vertigo a year and a half ago and now it seems the two are working together and it's absolutely miserable. I have gotten all tests done just waiting for MRI results but was wondering if anyone had advice on surgery because I'm doubtful at this point that I'm going to go the medication route because I get terrible side effects and have already been on gabapentin for years and it does nothing for the pain. They prescribed me oxycodone but I don't want to take that for a prolonged period. Just in shock and terrified any advice would be appreciated, thank you! 

DeeNZ
DeeNZ
Hi Lily, I am 31 and have had TN since I was 15 (I also started getting vertigo on and off about 2 years ago). I had a successful microvascular decompression surgery (MVD) almost 9 years and was pain and drug free for over 8 years. I am getting some pain again now (not as bad or regularly as historically) and am looking to get a repeat surgery on the same side. Prior to surgery I was on max doses of Gabapentin for years, it helped but definitely didn't solve the pain and I found the side effects and break through pain intolerable.
There are lots of surgical options available, most focus on damaging the nerve which can create side effects/ issues of its own, I chose MVD as it is highly successful, is better suited to younger patients and has limited side effects (no numbness etc). There is a really good write up on the MVD surgery option in the Facial Pain Associations latest newsletter which as available online and I'd recommend reading.
Hang in there, there is lots of depressing stuff online about TN but also a lot of people who successfully manage this and lead normal lives. The groups on facebook also seem to have loads more members and might be a better spot for advice.
mackeyhordy
mackeyhordy
My Tn pain started around a year back... i was put on carbamazepine and gaba too. But they sucked, chemicals dont work for me and i used to get bad side effects. but, 4 months ago..i was added to this FB TN forum and they were discussing herbs and homeopathy for TN. I was ready for surgery as well so natural remedies is still lesser evil. I checked this protocol that kept coming up in their discussion -Biogetica Salvation Kit with OM13 Formula. This is sold online after a docotor consult. Ive been taking it for 3 months now.. and you won't believe it but this has actually turned my life around. my pain is almost gone and even if it triggers its mild and very shortlived. I'm still taking these meds. need to do a 4 months course im told. things are looking up for me... seriously try this, its way better than the pain.