Trigemimal Neuralgia

[TucsonNeNe]

I posted this question a few minutes ago, but have no idea "where" it is!!!  So here I go again.....

I'm a female in my 60's, diagnosed with Trigemianl Neuralgia about a year ago, and would love to hear from other females with the same problem.  Your pain level, medications you take, and anything at all about managing this condition!!  
After my first episode of Trigeminal Neuralgia,   I took Gabapentin 100mg 2x-3x a day for 3 months. The pain gradually got better and  I reduced my pills to 1x a day.  The pains  then went away for 3 months, and I continued with 1 pill each evening.  When I tried to reduce to 1/2 pill each day, I would start having some minor pain.  I didn't want the severe pain to start back again, so I continued to take 100mg each evening.  It seemed to work fine.

Then about 2 weeks ago, I started having episodes of severe pain again, although not as bad as they were a year ago.  I'm taking 2-3 pills now, hoping to tame the pain again.  I do not want to go with a higher dose unless I absolutely have to.  I've read that periods of remission, then back again,  can be part of this nerve condition.  That's why I would love to hear from others, to see what is happening with them.

Please let me hear from you!

[mizliz13]

The other day I was researching TN on my computer and I located a Doctor who specializes in treating people like us.  I don't remember his name but he is in Myrtle Beach, SC. If I ever get close to that area I am going to see him just based on what I saw on his website.

Between the MS and the TN I am tired of this pain battle.  Has anyone been evaluated and treated at any of the big name hospital groups like Mayo, Johns Hopkins, Cleveland Clinic?  I am so curious about how they treat TN.

All we can do is hang in there and learn from each other as to what all is going on in the world of current treatments.  I have learned so much from reading all of the comments in this forum.

[Ruth1246]

My name is ruth1246 the comment I just posted was for you sorry I forgot to put your name in also for anyone else who wants to email these people as well . If you get a pain shield I would  be grateful if you post a comment as to how effective it was.  All the best ruth1246

[Ruth1246]

Hi I just read your post I"m so sorry you are in so much pain. My older sister also has trigminal neuralgia  I did some research a few years ago  on her behalf  and came across a Dr in Israel who had developed a device  that you wear  at night  called a pain sheild  low intensity ,low frequency ultra sound which they said help with the pain .my understanding from the research was the the blood vessel  going into your face was too close to the nerve and over time the pulsing of the blood irritated the nerve which then results in the neuralgia. Unfortunately my sister didn't peruse the information on this device  but I kept the email I got from them they claim it is successful in 75 percent of people  with T N   good luck  Ruth 1246.

[nancy99n]

I'm so sorry you are dealing with TN. It is scary when you get a jolt of pain and you just have to wait for it to pass. Medication at the right dose can help to stop the jolts of pain. Be aware that you need to wean onto the medications slowly and build up to the right dose and the right timing of the dose working with your doctor.
Have you had any tests?  Like an MRI or MRA?  TN can be caused by a blood vessel or vein pressing on your nerve. Sometimes an MRI/MRA can show that compression.  It can also be caused by Multiple Sclerosis and an MRI can help rule that out.
Some people can get their pain under control with medications. Other people decide on surgery such as a microvascular decompression or MVD when the MRI shows a compression. There are also other "destructive" procedures/surgeries that can give relief.  Still other people have found that acupuncture or a specialized form of chiropractic help control the pain.
One way to ease the pain temporarily is to use a warm compress. I used a microwaveable beanbag,  the warmth eased the pain a bit.
The main thing is to keep positive, find a good doctor experienced with TN, and research all your alternatives. Please know that there are people who find pain relief in various ways.
Take care and keep in touch
Nancy

[dina107]

Hi my name is Dina and I been dealing with TN for 2 months and I must say it is so very painful that I rather deliver a baby. The pain comes on and there is no turning back I feel like the right side of my whole face and head has been shot that's just how I describe it. I get very scared when these episodes come and you fell helpless and there is nothing no one can do to comfort you it is just that bad! I do believe dental work has triggered this condition and I just pray to god I can handle it. The neurologists has me on nueroten 3 times a day I just stated after 30 or more episodes Iam praying this will help in time. It is conforting to know that there are other people with this because at first I thought the doctor was wrong about my condition  but I do know now it is real and it is life changing it takes your joy away so I guess this is in Gods hands and I will just have faith we can all get the help we need to be pain free. God bless you all!!!

[SusanAFP]

I am diagnosed with Atypical Facial Pain.  I have constant pain all the time.. Gabapentyn has for the most part been a life saver.  I have been on it for 1.5 years.. I take 300 mg 6 to 7 x a day.  I believe I have a mixture of AFP exasburated by dental work (the root pain, as I call it).  Hardly anything helps the root pain.  I do acupuncture and have had about 24 sessions and I THINK it is has helped.  You have nothing to loose by trying it.  My doctor (Chiro) says he has wrked with people with TN,, but I am not sure I believe him.  however, he keeps on trying all sorts of things to help me get better. And like I said, I do believe the acupncture has helped.   We are still doing it.  We also started tyring HYPERBERIC OXYGEN TANK.. I only did this once so far. Stay away from sweets, dairy, sugar, wheat.. they all add to inflammation.  Staying away from them may help.