I first noticed my pain while washing my face in May of ’07. I had shock like pain seemingly centered somewhere in my left nostril then running across the top of my left cheek and round the left eye. I discovered the trigger point to be at the very tip of my nose. At first the pain would come/go but after one month it decided to stay whenever a trigger point was touched. Trigger points had increased to left of the upper lip, the left hairline area of the head and the tip of my nose. Pain lasts momentarily then disappears. On a scale of 10, I would classify my pain as a 9. (I’ve had pleurisy that I would register as a l0.)

I had no idea what was wrong so I visited my Primary doctor who immediately diagnosed TN. When Lyrica did not work he placed me on Gabapentin 900 mg per day. He told me if this does not work. he will recommend a neurologist. I’ve been on the drug two weeks and have several side effects but am finding the pain disappears for up to two hours each day. I’m not sure if this is normal when taking this medicine or not. Do drugs cause pain to disappear gradually or suddenly go away?

Thanks,
Marilyn

Hi, Marilyn,

You're REALLY LUCKY to have a primary care doctor who is familiar enough with TN to recognize it so quickly. Many TN patients go years before getting a proper diagnosis. But you should see a neurologist anyway to confirm the diagnosis, possibly order an MRI to rule out MS, tumor, or other cause of the face pain (though this first MRI will probably not show an actual compression - it is generally just to rule out other, more obvious causes), and most especially to work with you to find the best treatment. 900 mg/day (I'm assuming that's 300 mg. 3x a day) is a very low dose of Neurontin/Gabapentin and you may need to titrate up slowly to find the proper therapeutic dose for you but should do so under a neurologist's care. These are antiseizure meds that, unfortunately, act on the whole nervous system and will make you feel slow and tired, etc. at first, but over weeks or a few months your body should acclimate at least to some degree. There are also lots of other meds out there to try if the Gabapentin turns out not to be the best for you. The neurologist should explain all the treatments to you and their pros and cons. Be sure to get a neurologist who has treated TN - it's rare enough that not all may have actually seen it.

Get a copy of Striking Back! The Trigeminal Neuralgia and Face Pain Handbook by George Weigel (former TN sufferer) and Ken Casey, M.D., a neurosurgeon who specializes in treating face pain. You can order it from the Trigeminal Neuralgia Association (who publishes it) by calling 800-923-3608 or 352-331-7009 (Gainesville, FL) or by visiting their website at www.tna-support.org (books available at https://www.tna-support.org/storefro...ducts.asp?id=2).

Also, read the sticky threads and the links in them at the top of the forum - Useful Websites and Tips for Newcomers. These will give you an idea of what other meds and treatments are available and others' experiences.

Do take care and let us know how you make out.

Jean

JeanC, what would we do withouth you gal!!! You're awesome to post all those phone numbers, websites, and also mention the book which many of us refer to as "The TN Bible".
900mg of the Neurontin/Gabapentin is low, but still glad that it's offering you a bit of relief from your pain. I worked my way up on it when I first started taking it Dec. '97 to try and find an amount that would control the pain.

Wishing you much success,
Hugs and prayers,

Marilyn (yes, I like your name too! LOL) Many know me as Corky which is my parrot's name

Jean, thank you so much for your kind and informative post. My primary has told me he will recommend a neurologist if the meds he prescribe do not work. I understood if they did work he would handle my case himself. However after today I'm not sure he can.

This morning I had the worse pain I've ever had involving the entire left side of my face. I can't understand why it changed all of a sudden. Each time I've smiled, coughed, talked, grimaced, yawned or involved my left cheek in any way, I've had excruciating pain. My meds have not helped and I'm dreading the night. Is this normal for the pain to suddenly change from bad to worse AND increase in area.

I've made note of the book and plan to order. Thank you again.......Marilyn

Marilyn, thank you for replying and I like your name also (smile). I am happy to meet you and look forward to reading and replying to your postings. The 900 mg of Neurontin was beginning to help I thought but after today I'm not so sure. Thanks again for taking the time to reply to my post...........Marilyn

There really is no "normal" for TN - it's rare. You may be having a "flare-up". Go to a neurologist. The gabapentin may help you but you're at the starting dose (usual adult dose for TN is between 600 and 2400 mg/day - http://health.utah.gov/medicaid/phar...ate%202005.pdf) so if it's not controlling the pain, your doctor should have increased it by now. Don't increase without a doctor's guidance - it's an antiseizure med and you need to titrate up slowly or it can cause seizures and you need time to acclimate to the side effects. Once you hit the right dosage, you should feel the relief right away. And once a neuro gets you on the right med and the right dose, he/she can then advise your primary care doc how to carry on with it. Call your doctor and ask about increasing the gabapentin or seeing a neuro ASAP. You don't need to suffer.

TN can have remissions and flare-ups. Read the websites - especially TNA and U. Manitoba - they're good places to start. Start a "pain diary" as described in the Newcomers thread and take that with you to the neuro when you go - it will help a lot. TN is diagnosed mainly on patient history and description of pain.

Jean

Here's a tip sheet from the TNA to help you prepare to see a neuro -

Making the most of your consultation with a Healthcare Provider

Jean, thank you for your kind response and the information provided. I am sorry to be slow in responding. My husband has been ill and I’ve had my hands full. We are still working (self-employed) and sometimes it is overwhelming. I read the items you suggested and made a copy of form to ask a neurologist whenever I am directed to one. My primary has increased my meds to 1200 per day. At first they worked somewhat but now I’m beginning to have more random pain. I’m going to call him on Monday for advice.

I had hoped this website was one where I could converse with others regarding this condition but I think I may have been mistaken. I’m feeling fairly alone right now and sharing complaints and stories with others that have this same condition would help me a great deal. I am sorry if I have caused you extra work by responding to my repetitious questions. I’ll look around for a site more suited to my needs. Thank you again……..Marilyn

Dear Marilyn:

I read all the postings in response to yours. I think that you are getting excellent advice and recommend that you re-read them all. They all know what they are talking about. It is easy to get discouraged with this very serious condition. I too think you were very lucky to get diagnosed right away
and did not go through a long time of wondering what was wrong with you.

So please keep reading and posting on this Forum. There is much very sound advice here from people who are experienced in dealing with TN.

Shirley H.

Shirley, I have misunderstood this forum. I thought it was for support but find it is for advice. I have 3 doctors and most likely four very soon. I can get all the advice I need from my doctors. It is the daily hour by hour living with this condition that I am interested. What do you do during flare-ups to help alleviate the pain? Does your pain pop up in other sections of your face then go away? I can read books, pamphlets, and brochures on these questions but nothing beats talking with others that are actually living it. That is what I thought this forum was about. It was my misunderstanding and I’m sorry to have bothered anyone. By the way, I have had this condition since May and only diagnosed in August. I think that is a long time, especially when in pain, to wonder what is wrong with me. My Pulmonologist treated me for sinus problems for 3 weeks before referring me to my primary doctor. It is my understanding, in my area, that neurologist only see patients when treatment plans have been exhausted and then it may take 2- 3 months to book an appointment, thus the reason for not seeing one immediately.

Marilyn, again thank you for a kind and considerate post.