treatment of trigeminal neuralgia-need an expert

[lctpsychego]

My 23 year old son has herpetic trigeminal neuropathy-he needs an expert.  He has been to numerous physicians who have not had experience with this specific type of neuropathy.  He is immobilized by pain and has become dependent upon pain meds.  He feels trapped in a viscious cycle and I fear that he might become suicidal.  He needs a knowledgeable physician who can help him.

[painterchic]

I'm sorry to hear your son is in such pain and no resources. Everyone has given you great advice, there are doctors near you who know what they are doing. Unfortunately if its post herpetic trigeminal neuralgia, your options are fewer, but not hopeless. I am assuming you have been through the usual round of neuropathic and anti-seizure drugs in addition to pain relievers? Also, this disease takes it's toll mentally. Make sure your son is taking care of his mental health too, this may require an anti-depressant, which also can help with the pain or improve the performance of some drugs for TN. Unconditional support from family is crucial in addition to a great doctor. I am sure the ATN website or phone # will point you in the right direction. There are great articles on there to read also. Best of luck to you both.

[hava]

While looking for an expert, start doing this breathing technique, and it will take the mind away, and help to ease the tn over the longer term(3-6 months).
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Anulom Vilom –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two middle fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed. Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.
While doing anulom vilom, keep your eyes closed, concentrate on the third eye (point in between the eyebrows).

[heytrud]

Yes, TN is called the suicide disease. For one thing, your son needs to learn HOW TO COPE with the pain. Never, ever admonish your son for being addicted to opiates. Without opiates, he would definitely commit suicide, I am the perfect example. Without pain medication you may as well pick out a grave site for that matter. He can always become UN-ADDICTED to pain drugs if treatments work for him. Don't worry about pain drugs right now.  Like I stated, he can go off of them eventually, if he is ever healed. Remember a few things now, Tegrotol and Neurontin are very bad drugs, they have horrid side affects. I stopped them both and now I can think again, lose weight and feel much better..I only take Oramorph SR 60 a long lasting pain drug every 6 hours. I also use a break-through pain medication like Percoset if the pain is much worst. I do this when I cannot control the pain which cannot even be described in words. Your son needs a Neurologists who specializes in TN. There are not too many of these Doctors around. As one writer suggested, go to the TN website, you can get information of these specialists there. I did and learned just how bad Tegrotol and Neurontin really is, and stopped them both, thank God. Your son is very young to get TN.. Is there a history of TN in your family? Was he hurt in any accident? Accidents can cause TN to spurt up and it's been proven lately.  Good Luck and you must be his ROCK. He needs to be loved, and he needs a parent to support his treatments. You must be the ROCK whether you like it or not. Good luck, and PRAY that he can find the right doctors and treatments.

[nancy99n]

The Facial Pain Association (formerly known as the Trigeminal Neuralgia Association) has a page on their website where you can look up health care providers by state.  http://www.fpa-support.org/providers/index.html

You can also call TNA directly at 1-800-923-3608  or 352-331-7009.

Also, if you look at their Medical Board of Directors -- it lists various doctors in different areas of the country.  

I see a doctor that's on their Medical Board and he is an expert and I am very glad to have found him.

Good luck to you and your son!