Treatments for Atypical Trigeminal Neuralgia
 

I am interested in successful treatments for Atypical Trigeminal Neuralgia. I have constant pain in my upper teeth gums.

A neuro has suggested Radiofrequency Rhizotomy. I have heard from others that it made them worse. I would love to just numb the pain.
You never hear from people on these forums that have had success.
Is that because there is none. We just have to live with this the rest of our lives??:(

Marshur,
Have you tried Lidocaine in any of it's forms? Apparently, it works well as a nasal spray for instant relief. I have Infusions along with Oral Ketamine and combined they dull my Chronic Neuropathic Facial Pain and TN by 50%.

Dave.

I am very appreciative of my topical cream that has Gabapentin, Lidocaine and Capsaicin in it. It helps a good amount! Mine has to be specially prepared at a special compounding pharmacy.

At times I have used an RX in my ear that numbs pain. I'm sorry, I can't think of the name at the moment. It is a prescription that is often used for children with bad ear aches. It helps a little.

There is an OTC product in the dental section called Kanka (or something very close to this spelling) it looks like a pen. It is like orajel. It has lidocaine in it. It is used inside the mouth. I have used this on occasion and it also helps a little.

Hi, I myself might have atypical trigeminal neuralgia too. I have a dull pain in my upper left gums around the back molar. The pain is only near that last molar on the palate side. The area feels sore and tender. At its worst, it can feel like a stabbing pain. I was just curious as to what your symptoms are. I hope you feel better!

Some people with ATN do have successful treatments with MVD etc. But then many have not or it has gotten worse. It is a gamble.
I have been told to stay away from any invasive procedures, especially ones that damage the nerve. It is a very frustrating position to be in.

Hi rtmc,

Have you had a clinical and radio graphic evaluation of that area of your mouth by your dentist or an oral surgeon to rule out infection, a fractured tooth or periodontal disease? Is that molar or the tooth next to it root canaled?

Bryanna

Are you thinking of Anbesol? I know someone who uses that for their tooth pain & it seems to work well. It's available at most stores that have a dedicated Pharmacy section.

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

Bryanna, my ATN started next to a tooth that had been root canaled twice. I am curious as to why you asked that question. My dentist and the endodontist had both ruled out infection when the pain had gone on for about 6 mos to a year. It's been 2.5 years now and I am seeing a neurologist but the meds have not provided the relief I had hoped for. Some decrease in pain but nowhere near what I need. Just wanted to know why you asked Mashur that question. I have never heard of the type of position you hold, but I'm glad to know there are such professionals out there.

Hi Mrs. NolaVette,
If you don't get your question answered here, you could repost it in the dental forum. I'm sorry to hear that you are suffering from ATN and I hope you find some relief soon.
Some of the pain I have feels like toothache, but my teeth aren't causing it. My doctor told me he was glad I hadn't had any teeth pulled. Your situation is different from mine, though, because you know it started with a dental procedure.
I hope someone can help you soon. Don't give up!
Best of luck, Cheryl