Trigeminal neuritis/neuralgia treatment: What works for you?

Hey Jen— thanks much for the prompt response, and thanks for clarifying! First, to briefly give you a better picture of my experience: I am sure I could NOT have gone 12 yrs with constant pain! My symptoms were such that one never knew when the spasms would occur. Gee, how best to describe? They would always be changing—whether in intensity, duration, time of day or nite, number of spasms each day or nite, location (always on left side of head/face, mainly cheek by ear.

They might occur for two weeks, then be off for a week or two or for three months, but not so long off after the first few years; they might occur every 3 minutes (honest) for six hours in bed at nite, during the last few years; especially painful ones might occur but four times a day; the afternoons for some reason were generally and mostly pain-free til i went to bed, being awakened with jolt, for such apparent reasons as unconsciously biting my lip, moving my tongue, moving suddenly in the course of a rather active dream. Well, you get the picture, friend.

Increase in the intensity of spasms brought me to the realization I could not avoid drugs any longer about a year ago; but my 200mg/twice daily is apparently wearing off, hence my present day exploration.

So, to make sure I hear you: after 14 years, in August, the painful spasms returned; in 14 years, after the first, you've only had the recent 'needle' procedure; you continue to maintain the same drug dosages.

And, please tell me, during that 14 years or recently as your body's undergoing a re-settling, do you/have you received occasional 'warnings', little nerve blips, that weren't painful but maybe scary to a mind that has learned to live with the fear of pain?

I appreciate your sharing so very much. And, if you would like to exchange by email directly, please let me know. Best for you!

Lee-Just happened to be able to quickly respond...you're welcome! Sounds to me like you have had a very difficult and confusing time of it. I mean not knowing when these events would hit you--blindsightedly.

My occurrences were very different than yours...14 yrs ago (6 mos after car accident) I started Neurontin, then got the nerve blocks. After a few months added Tegretol and did more nerve blocks. Then Dilantin started and more nerve blocks...all over a 1 1/2 yr period. Over that time there was a waxing and waning of painful episodes. Then was able to STOP all meds/treatments.
I don't recall any warnings/nerve blips, etc.

In mid-August I had severe and unrelenting pain--right sided throbbing, stabbing and mostly facial-temple, mandible and maxillary regions. I tried Hydrocodone but it only took the edge off the pain, up to 2 tabs every 4 hrs, and was making my stomach ill. Was able to stop the Hydrocodone entirely after the nerve blocks and starting the 2 meds.
email: kobleurjs@aetna.com

I am new to this community. My PC thinks I might have trigeminal neuralgia. The right side of my face up to my temples is horribly painful. The pain is more of a burning than electrical as described. I have been waking up with horrible headaches in the front of my head. I have also had migraines off and on for a long time. I have been diagnosed with reaumatoid autoammune disease for 1 year and a half.

The pain I am experiencing now off and on is excruciating. Is there anyone else out there experiencing this?

Dear Janett18 -
Mayo Clinic has some information available about Trigeminal Neuralgia available here: http://www.mayoclinic.org/trigeminal-neuralgia/ also some inforamation availabel about migraines: http://www.mayoclinic.org/migraine/

The Face Pain Association also has some good resources available: http://www.fpa-support.org/

If you are interested is requesting an appointment to see a Mayo Clinic physician in MN, FL, or AZ please click on the "Request an Appointment" button on the upper right hand corner of your screen.

Hi, I too suffer from trigeminal neuralgia pain. It started in 1994 when I woke up one day with a strange burning in my mouth. That continued for 6 years before I had a diagnosis. The doctor tried me on amitriptyline, commonly used to treat depression, but it did not help with the burning. I saw many doctors about the problem and no help. I also had strange nerve pains throughout my body which I had diagnosed as fibromyalgia. I had frequent headaches and a doctor said that I was having migraines so he started me on Imitrex. That did help the severe head and facial pain on my right side of my face. When I was finally diagnosed after my own research on the internet, I saw a neurosurgeon and he confirmed the diagnosis by looking at a CT scan. I immediately was scheduled for MVD surgery so that I could have relief. The pain was increasing and interfering with my every day life. I was a mother of three young children and could not enjoy anything. The surgery went well but I did have a complication of spinal fluid leakage and had to stay in the hospital for a week.
The pain did subside for a while but I would have the head pain once or twice a month instead of every day. It has been like that until recently. I noticed when I was washing my face that I started having stabbing pain on the right side of my face. I was worried that it was coming back and I was right because I have had the pain every day since then with talking, brushing my teeth, washing my face and kissing my husband. If anyone has any treatments that could help, please let me know or if you just want to talk about it so we don't think we are alone with our suffering.

I had surgery 2yrs ago. Microp(spelling). No pain until recently. Now low pain. I suffered very much before meds didnot help. Has anyone had to do surgewry again?. Iam 81 & also have institial lung diswase.

I had the microvascular decompression surgery on December 17th at Mayo in Rochester. Operation on Monday - released Wednesday morning. It took over a month to back off the carbamazapine and gabepentine I was taking, but I have absolutely no more pain. My left vertebral artery was pressing against the trigeminal nerve and 3 tributaries from the artery had wrapped around the nerve as well. They had to pinch the nerve several times to get everything separated which can sometimes lead to side effects. All I notice is a slight 'fuzzy' feeling on the tip of my tongue and the center of my upper lip. I can live with that versus the extreme shocking pain I was experiencing in spite of the prescriptions. I've reflected quite a bit on how people must have dealt with this ailment before all the medical techniques known today were available.

I have had trigeminal neuralgia for a little over 30 years. Until now, I have been able to control it adequately with Trileptal. However, now the effective dose is greater than the toxic dose, so I am considering surgery. I would love to hear from anyone who has had experience with any kind of surgery for trigeminal neuralgia. I would like to know how well it worked, and if the pain returned eventually. Many thanks to all who can pass on information to help me make decisions.

<p>I just joined the discussions here. I had the disease TN. on the right side of my face. The Neuosugeons from UC Davis in Sacramento Ca, (after many surgeries) finally gave me a brain Ritzotomy that cuts 2 out of 3 branches in my face. It ended the pain. I now have numbness and Anastesia Delrosa or burning face syndrome as a complication.. My question is can the TN come back on the other side of the face? I have pain when I chew on the left side.</p>

Hi @Restless67,
Welcome to connect.
In this post @ruthanne speaks of getting gamma knife treatment for her tribiminal neuralgia https://connect.mayoclinic.org/discussion/seeking-advice/?pg=1#post-26435 Hopefully she'll join this conversation thread.

I can imagine that pain on your left side would lead you to worry about TN coming to that side of your face. Have you spoken to a neurologist about the new pain? How are you managing the anesthesia dolorosa?