I have had atypical trigeminal neuralgia for 3 years. It started out with stabbing pain on top my head. Over the course of about 6 months, the pain spread to all areas of my face on the right and then spread to the left. My pain is constant like yours, but moves around. It’s mostly mild to moderate. With the pain I have ringing in my ears, noise sensitivity, low body temperature, twitching (usually not visible, but I can feel it), burning eye (left side only), and depression. I have received something like 18 different diagnoses ranging from atypical facial pain to trigeminal neuralgia.

This is going to be a long post, but I wanted to share the treatments I’ve tried as well as some of the things I’ve learned along the way. Maybe they will be helpful to you or someone else in our situation. I am NOT a doctor and this is not medical advice, but it might give you some ideas of things to discuss with your doctors.

I’ve tried a lot of different medications. Most didn’t work and they all had side effects. Amitriptyline helped me the most. I didn’t realize how well it was working until I stopped taking it. Unfortunately, I had to stop it because of cardiac side effects. I’m now taking Cymbalta. I think it is helping a little.

Capsacian nasal spray (brand names Sinus Buster and Sinol). The theory is that regular use can reset your nerves. I tried it 3 times a day for 6 weeks. It didn’t help and really burned! Don’t try without asking your doctor.

Sphenopalatine Ganglion block. Helped a little, but for me, the discomfort of getting the injection outweighed the small benefit I received. I was offered sedation, but didn’t want it. That was probably a mistake. If you can find a doctor who has a device such as the TX360 that delivers the block through the nose, this might be a good option to try. A doctor in my area has just started using the TX360 and I’m thinking about trying a series of blocks, but haven’t gone for a consultation yet.

Occipital blocks. I don’t really understand why, but these help me more than anything. They completely take away the pain on the top of my head, but they also help my facial pain. It doesn’t make any sense because it’s a different nerve, but it makes me feel a lot better. My pain management doctor explained to me that ALL my nerves are sensitive, not just the trigeminal nerve. I was reluctant to try the occipital block because I thought they were working on the wrong nerve, but now I’m glad I tried it. I’ve been getting them on both sides every 6 weeks.

Physical therapy. Didn’t really help in my case, but at least I tried.

Counseling. My family is very supportive, but I don’t want to overwhelm them by talking too much about my health issues. It’s nice to have time to talk about ME.

Teaching hospital. I waited 13 months for an appointment at UAMS in Little Rock, Arkansas. This was a very bad time for me, but I had a good experience with them after I FINALLY got in. After my first visit, I got bounced to three other doctors. One of the benefits of UAMS was that they have some kind of high resolution MRI machine. I had had 4 MRIs that were all clear, but the one I had at UAMS showed a vein abutting my trigeminal nerve. This was enough to qualify me for MVD surgery. When they went in, they found an artery looped around the nerve that hadn’t shown up on any images. The surgeon, Dr. Day, told me that he sometimes will do exploratory surgery without any imaging evidence. If you have been turned down for surgery, but feel that it might be an option, it never hurts to get another opinion. My surgery didn’t completely cure me, but it did reduce my pain and I’m glad I tried it.

There’s also an ENT doctor at UAMS who gives all kinds of nerve blocks for face and neck pain. I saw him a few times before I had my surgery. I would not have thought to go to an ENT for my kind of pain, so that’s another advantage of going to a big university hospital. One doctor may not be able to help, but can lead you to colleagues who can.

My hope is that you are able to find a solution that erases your pain forever, but the reality is that you might not be able to completely get rid of it. This doesn’t mean you should give up. Keep asking questions and be willing to try new medicines and treatments. And take care of yourself emotionally. The emotional toll of this type of pain is as bad as the physical toll and doctors seem to be unwilling to address it. It’s a hard situation to deal with. If there’s anything else I can do to help, please let me know. I’m rooting for you!
Cheryl