I am a new member and trying to learn more about Trigeminal Neuralgia. I was recently diagnosed and am taking Lyrica. I started at 100mg twice a day for about 3 weeks and had to move to 200mg twice a day about a week ago. Yesterday I had two episodes and am wondering if this is typical. From what I have read, 300mg three times a day is the maximum safe dosage and I am concerned that I will quickly get to the maximum dosage and still have pain.

My pain started about 10 months ago as a "toothache" in my right lower jaw. I went to my dentist and she referred me to a periodontist who then referred me to my neurologist. The pain typically manifests as severe pain in the right lower teeth, very similar to a toothache, but sometimes I get similar pain in the right upper teeth or right side of my face. It's like the worst toothache you can imagine and lasts for about 10-15 minutes. I sometimes have the sharp electric like pain but that only lasts 5-10 seconds.

My MRI showed an arachnoid cyst in the right cerebellopontine and cerebellomedullary angles that extends into the region of the right nerve V root entry zone. The radiologist report said "Flow-voids are identified in the region of the right cranial nerve V root entry zone which may be responsible for symptoms of trigeminal neuralgia.". My neurologist seemed to think that the arachnoid cyst might be causing the neuralgia and suggested I try Lyrica or "just live with it". I have had several friends suggest getting a second opinion from a neurosurgeon but have not done so yet. Any advice?

Hi,

Yes, absolutely get another opinion - get several! Definitely get another neurologist - there are lots of other meds to be tried and why is this one not sending you to a neurosurgeon? I would think if your MRI shows a cyst you should definitely talk to some neurosurgeons, too. I say multiple because if surgery is going to be an option you want to have someone you're comfortable with and confident in - interview several.

To learn more about TN and neuropathic face pain, read the sticky threads at the top of the forum and the links they contain -
Useful Websites and Tips for Newcomers - that will give you a crash course. Then 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).

You can search this forum for Lyrica to find others who have tried it and their experience. It's fairly new and there are lots of other meds out there for TN that have good track records. Many have had good pain control and fewer side effects with Trileptal or Neurontin.

Best to you and let us know how you make out.

Jean

Hi, I was finally diagnosed with this illness after numerous visists to dentist, courses of antibiotics, a referal to a maxio facial surgeon as my jaw was thought to be the problem, and finally a diagnosis for this painful illness. My GP just happens to be a homeopath, acupuncturist and skilled in chinese medicine. He put me on homeopathic treatement and started acupuncture. After the first treatement the pain and occurance escalted for around twelve hours and then reduced, the second treatment had the same effect although the pain was far less. By the time I had my third treatment the pain was all but gone and flared up only mildly for less than an hour. Since then I have been symptom free inspite of all the usual triggers. I urge suffers to explore this alternative approach with a skilled practitioner. he results in my case have been miraculous.

I am taking Lyrica and have had no ill effects after a year. I also take Neurontin,
Hydroxizine, Paxil, Amytriptiline, Peroxicam, and requip. I have been off narcodics for 1 and 1/2 years and although I do have more pain, I deal with it through Relaxation tapes, and kind of a self hypnosis. I am happy to escape the grips of
Oxycontin and Methodone.
The pain that I have is called Anesthesia Delorosa, the dreaded complication of Microvascular Decompression. I have had a very severe case of Trigeminal Neuralgia to the point that the nerve had to be severed at Mayo clinic in Rochester, Minn. It was a last resort. I wouldn't talk and couldn't eat, and the all too familiar lightening strikes made me petrified. Now I met a new Demon.
Anesthesia Delorosa, a pain that is with me 24/7. It is not a scary pain but at times it gets severe. I put ice packs on my face. there is nothing that can be done. I know that some don't want to have a microvascular Decompression
because of the risk of A.D. The left side of my face is numb.
Truely a Believer,
D. bug 7
You came to the right place for support and info. Hang in there,you will do fine. friends are like stars, you don't always see them but you know they are there.