12 Yrs with Incr. Severe Trigeminal Neuralgia - can't eat, what next?

[EndlessTN]

I am writing on behalf of my father who has suffered with trigeminal neuralgia for over 12 years now.  He used to respond to meds (tegretol, neurontin, and others), and now, after having had Gamma Knife and MVD, is still in terrible pain for weeks at a time.  At this point, his neurologist prescribes pain meds on top of the neuro meds and hopes he doesn't end up in the ER, where had been several times before with acute, unbearable attacks that send his BP over 200.  He is 66 and lives in NYC.  You would think there would be some way to get him comfortable enough to eat with violent attacks, but the docs do not have answers for how to get around the trigger points in his mouth and disabling pain episodes.

Any ideas on how to make his life bearable?  He has a very severe case that destroy his quality of life.  I can't find any doctors that specialize in working with such patients on an ongoing basis (not just when it's time for surgery).  It's unbelievable.  It's like he is entirely alone on this and it's just devastating to watch.

[sneffen]

acupuncture works for most.

[hava]

Something you can do yourself and improve your quality of life.
To to get relief from Tn trigeminal neuralgia naturally, the full pranayam exercises are described below.You can do this alongside any medication.
Initially do Anulom Vilom (30 minutes twice a day) and bhramri(21 times) for the fist 3 months and then start the full set of pranayam.This works gradually, so allow time (3 months to 9 months) and concentrate fully on the breathing. Keep a record of episodes and how you are feeling. This will show you a trend.Avoid cold drinks and drink warm water.

Build up your timing gradually.If you feel tired or dizzy, stop and resume after 1 minute.
Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for upto 15 minutes twice a day. Not for pregnant women. Seriously ill people do it gently.

Anulom Vilom -  Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two 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.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep breaths into the lungs.

Bhramri Pranayam -Close eyes. Close ears with thumb, index finger on forehead, and rest three fingers on base of nose touching eyes. Breathe in through nose. And now breathe out through nose while humming like a bee.
Duration : 5 to 21 times

The extra oxygen traveling through the body energises the cells, and restores the imbalance in the body systems.
After you are better, continue the pranayam once a day, to keep the Tn away.
Please come back to report your progress, so others may benefit.

[O2BHRMN]

Have you tried some natural anit-viral herbs consistent with blood type?

I am blood type A and have used a combination of tincture of St. John's Wort and tincture of Lomatium taken sublingually.

Blood type Os are advised to avoid St. John's Wort. I read somewhere that it lead some to suicide.  

Try researching the cause through local college library databases.

The cause of trigeminal neuralgia
Medical Hypotheses, Volume 62, Issue 6, June 2004, Page 1023
A. D. Ecker

I have also read that the amino acid L-Lysine retards Herpes viruses.

Best to you.

[tallredhead]

I am empathy for your son (please  be kind and patient with him).  People, friends, and relatives forget about you.  This disease is silent, because the victim keeps to themselves not by choice, but due to the fear of on-coming unbearabe pain.

Peace be with your son,  and all the humane people who care. Thank you !

[Grammaskip]

I know your desparation.  My son is dealing with a similar situation.  When he describes the pain over the phone to his neurosurgeon 5 hours away, they set up surgery.  That was in September.  Now he is being referred to pain management for help by those doctors.  Pain management says they have already tried to treat two others with the same affliction and were not successful.  So where does that leave him....traveling to the ER every other week when the pain is unbeasrable.  I will be watching to see if anyone else out there hass any answeres for you.

Thanks for your post.  It is finally refreshing to see my son is not alone.