Trigeminal Neuralgia

Hello,
There are very few here with TN. I suggest you Google Trigeminal Neuralgia online support groups. There are some excellent resources with people who know exactly how you feel and can share your experiences. You can also help others who may be new to TN.

A family member has TN and has been greatly helped by two different sites that pop up when you search. Continue the faith and prayers, plus find others who understand. Wishing you the best!

Thank all of you for your feedback. Your advice, support and prayers have helped already in a BIG way. The neurontin seems to be working more and more each day. I am very careful eating (not chewing on that side, taking very small bites, avoiding hard to chew foods, etc). I have an appointment with a neurologist just after the first of the year. My best wishes for you folks to have the best holiday season ever!

Sue

Thanks rockyd and basimelhashy. Any info about meds and specifically TN in general will be so helpful when I visit the neuro next month and how to explain to my family & friends when I am experiencing.

Many thanks, EleanorRigby. I have my first appointment with a neuro on Mon am. Last night the pain was so bad I was sobbing, praying the rosary, took extra xanax and was doing anything else I could think of to take my mind off of it. As I am sure you know, it feels like a hopeless situation when the pain gets that intense. I, too, have been diagnosed with MDD/bi-polar. I am already taking Lamictal (for the past 4 years) and have tried a plethora of anti-depressants (along with Lamictal) for depression over the past 25 years. My depression has lifted so that I am taking only the Lamictal as present without any other anti-d's. But researching the net for other treatments has had a depressing effect on me when I read that anti-d's along with Lamictal & Xanax works for many peoplle, because I am already taking those. The pain started two years ago (Christmas morning was the 2-year anniversary) after a root canal (by general dentist) and has increased steadily from the area around that tooth. After a second root canal (an endodontist this time) was done on advice from a 'burning mouth' specialist at LSU School of Dentistry, the pain continued. As pain has been spreading and increasing, I went back to the endo last month just to make certain there was nothing wrong with that tooth. At that point, I decided I would have to see a neuro. I am hanging on until Mon. I hope he can prescribe something different than neurontin. I have read on different sites that Tegretol has worked (albeit in some cases for only a short time) for some people. The surgical options (I know these are usually after all others have been unsuccessful) are usually the last choice of treatment, and some of those are only successful temporarily. I hope that some type of med/s will work, even if temporarily, because I don't want to go into a tailspin with regard to my depression. My spirit would be in a very good place right now if not for this pain. I should have said initially that I have not actually been diagnosed with TN, as much as that is even possible to determine, but my own research, leads me to believe this pain could not be anything else. Thanks so much for your input. I would certainly appreciate any feedback you have with regard to misinformation and other sites to check out. Hope you have a glorious day.

Sue

Hi Mrs. NolaVette,

I have trigeminal neuropathy (not neuralgia) on one side of my face that is a sequelae from a severe eye injury that I had 8 yrs ago. The majority of my pain is in and behind my eye. And it is a result of damage to other nerves and tissue behind my eye caused by the injury, in addition to 2 autoimmune eye conditions that I have -- both of which cause pain in and around the eye. Like Dixie said, I can COMPLETELY relate to wanting to rip my eye out, because the pain is so severe...

However, my ophthalmic branch of trigeminal nerve is also affected where it emerges from the skull behind the eye. And my trigeminal neuropathy is likely due both to direct damage from the injury, and compression secondary to retrobulbar inflammation from my autoimmune diseases. It causes pain to radiate from my eye across most of the affected side of my face (forehead, over the ear/nose, and down to the upper lip). And it is especially intense when my eye pain is at it's worst.

I have not found any medications (nerve medications, opioids, etc) to be especially helpful with my pain. Hydromorphone has helped me some, but nothing earth-shaking. I do have a trigeminal nerve stimulator (same device as a spinal cord stimulator, except with leads on the ophthalmic branches of the trigeminal nerve, instead of spinal nerves). The stimulator has helped me some with the trigeminal neuropathy pain (less so with the main source of my pain, which is behind the eye). However, it also unfortunately tends to cause local muscle contractions, which limit it's use. It was more helpful to me initially, but has become less effective over time. I'm not sure if it is just because my body has "gotten used to" the stimulation, or because the muscle contractions are worse due to scar tissue formation or something of the like. I suspect that perhaps it is a bit of both.

While the stimulator that I have was primarily implanted for eye pain, I do know that they are used for trigeminal neuralgia with some regularity. Actually, the neurosurgeon who implanted mine is a TN expert, who I was referred to by my neurologist. I just mention it, because perhaps it may be something to look into down the road (not a first line treatment by any means). The one thing about nerve stimulators is that they are very personal experiences. What works one person doesn't always work for another, even if they have the exact same disease. It is something that you actually have to try before you will know whether or not it will be of any help to you. For me it was a last resort...a Hail Mary, if you will -- something that in my case, was completely experimental, and was only pursued only after exhausting ALL other less invasive options (medications, nerve blocks, etc). And it has helped, even though it is not as effective as it once was.

Unfortunately, I don't have much more to add. I'm sorry that you are suffering from this horrible disease. Although my condition is not exactly the same, I do know how awful chronic, severe facial pain can be. I hope that you are able to find some relief. If I were you, I'd be looking not just for a neurologist/neurosurgeon, but one that is particular familiar with TN. As it is a complex disease, and can be very difficult to treat. Best of luck to you!

Skeye

Post Edited (skeye) : 1/2/2015 11:07:44 PM (GMT-7)

YES, Ang...I STILL HAVE SHINGLES...7+ months now, and counting.  The blisters eventually dried and flaked off, leaving DEEP scars above my eye/eyebrow.  However, the fire ant colony remains beneath my skin.  I had blood work done to measure the antibodies in November.  It showed aggressive levels as with massive outbreak.  Huh?  I've taken 30 day cycles of anti-virals since day 1 in June.  YAY ME!!  I have a med-resistant virus!!  I've taken 2 more cycles of Valtrex since then...STILL driving me out of my tree!

PLEASE HELP...If any of you have experience with SHINGLES/PHN or knowledge to share...I am desperate!

Thank you Ang, for the info.  I will certainly research it.  I don't know how much more I can take!

Hugs~~Dixie

I'm so sorry you are going through this- nerve pain is simply awful :( I am on a medication right now that is making me drowsy, I am trying to hang in there and hoping that it improves over time. Have you tried Lyrica? I seemed to adapt to the tiredness on that but it may not be strong enough for your pain. My dad has TN, he had the MVD (microvascular decompression) surgery which has worked beautifully. I think it is only an option for Type 1 TN though.

I forgot to say, are you able to try tegretol (carbamazepine)? You may not be able to with current meds, but it works very well on this type of pain. It worked for my Dad, the only reason he had to have the MVD was because he ended up developing a severe rash and a DVT, which is apparently unusual.