Cured or remission?

[trobbins66]

Just wandering if you've ever heard of TN just going away forever without surgury?  I've been in remission for over a year now.  I've basically had 2 cycles of it in total.  First time was very mild and only lasted for a couple weeks.  The second time was a nightmare.  I was full blown for 8 months.  For the first month of this cycle I  suffered a heart attack, and had shingles which made my TN attacks strike both sides of my face for up to 1 1/2 hrs long!!  
Since then I have had only 2 attacks that were the typical 1 minute long.  Does this always return or is there hope that I won't have to go through it again?  

[jnilesbarr]

After a sever injury my 10 yr old son was diagnosed with CRPS/RSD a nerve pain disorder.  After having pins and hardware removed from his arm his symptoms improved in some ways but changed and became worse in other ways.  

He's been a patient at LPCH at Stanford University for several years now and it's been a challenge.  He experiences the cluster headache other symptoms consistent with TN.  TN (from what I know) is the swelling trigeminal nerve that delivers feeling to the face and "surface" of the eye and NOT a loss in the insulation of the nerves (that sounds more like MS) - which my son's father has.  

One theory is that these disorders are all related and some people are predisposed to them... whether it be due to heredity or other factors.  Also, I do know of people that tell me they’ve healed miraculously and the pain occurred less frequently and less severe each time until they’ve been pain free now for years & years.  

It's said that children are the most likely to heal themselves (I guess that's one advantage to my son going through this at such a young age).  He’s been in remission for almost a year (although he still mild pain almost daily).. its definitely tolerable... and he's drug free!!  

So keep the faith, think positive and avoid all the stressers and triggers… it can happen, even the doctors tell me so!!!

[JBerryMor]

The first comment was correct. The exact cause of Trigeminal Neuralgia  is unclear but believed to involve loss of the myelin around the trigeminal nerve.

[bradford64]

I am very sypathetic to your TN.  I also have had cycles of severe flare ups that would last up to 2 hours and leaving behind a very tender and painful area of my right side of face and jaw.  These attacks are unbearable and I have heard it called the suicide disease.  Mine will go away for up to a year at a time then when they return, I will suffer them daily for days or a couple of weeks before they stop.  I also have severe nerve damage in cervical spine and I have often wondered if this is part of the cause, the doctors are unsure and doubtful that it is related but I am curious if you have any other neurological symptoms.  Lyrica, Lamictal and zonisimide taken daily seems to lessen the degree of pain and flareups.  They do return.  It is rare that you will go into remission forever since it is a nerve malfunction and the coating of the nerves have worn off which causes this condition.  Bless you. bradford64