Scared In New Jersey

[spid77]

Hi everyone-

Here are the bullet points-

* Pain started about five months ago.
*Stabbing pain behind the eye followed by dull aches in temple and jaw.
* Visited emergency room, got cat scan, was told by ER doc pain was from new reading glasses.
* Saw Optometrist, no growths behind eye, was cleared
* Visited emergency room again, CAT SCAN was preformed, came back negative, was referred to a neurologist.
*Neurologist diagnosed me with stress headaches, was prescribed tramadol. It did nothing.

*Visited TMJ Specialist Dentist. He diagnosed me with pre-trigeminal neuralgia. He prescribed Tegretol. Tergretol took away 99% of pain.

*Had MRI with and without contrast, all came back clear.

*Saw new neurologist, confirmed diagnosis of pre-trigeminal neuralgia.

* I am am insisting on knowing how I got this.

*Currently awaiting a CTA scan on friday.

* I have become completely depressed and convinced that I am going to die from this.

*Please help me.

[Tinkris23]

I find this blog amazing! I've been diagnosed with TN, & I was told its was brought on by a car accident in 1991, it was very traumatic head on collision which caused whip lash & I hit my head on the steering wheel, @ that time my car didn't have airbags, so i received a concussion.  After, that my world changed drastically as I healed slowly & got older, I went for many exrays, no MRI's & all it showed was a swollen skull.  As years past, I would get severe headaches, went to neurological drs. They would diagnose me with migraines & prescribed many drugs. Also, finally found 2 dr's that deal with facial, head & neck pain, they are my saviours for now. You are truly correct its like needles in a hay stack with all these doctors, no one believes what your telling them, every neurologist I've gone to said I don't have TN.  My patience are wearing thin, right now I've been seeing a pain mgmt dr, I like him, but he doesn't believe I have TN, he is now treating me for herniated discs in my neck, I will be getting a nerve block for that & pray for relief, time will tell.  Then he would like to do nerve injections to my face to see I get relief from facial pain, cross your fingers it works..I've done acupuncture, somewhat helped but @ that time I had stomach issues going on & made me feel worse, & for now I'm on savella, which is for fibromyalgia time will tell, I guess, don't think I'm not digusted because I am....I'm ready for drastic measures.  I've also seen the drs tv show with trigeminal nueralgia, very interesting my husband said to make an appt. right now my focus is on my neck & arm pain etc. after awhile it all blends together, & then I'm on a sofa or in bed. Sorry to blog so much, I wish this disease for no one.  Good luck to all!

[painterchic]

Nancy is right, you will not die from this! And stress makes it SO much worse so try not to aggravate things. Keep in mind that all the diagnostic MRI and MRA imaging often do not show anything at all, and the blood vessels are not often seen until surgery, so do not let that discourage you.
The fact that you responded to Tegretol so quickly is a diagnosis in itself and you have saved yourself what some go through years of frustration trying to guess what is wrong or find a drug to help. The fact that it is typical means that you have options as well as far as surgery goes.
As Nancy says, find a good teaching hospital or a specialist that deals with TN if you can. Check out www.fpa.org. It has links to medical professionals by state as well as current articles and other helpful information. Please take a moment and register so you can access all of the information.
Also watch this video from an episode of the Doctors where they show the nerve and blood vessels on the mri and explain the condition and mvd surgery.
http://www.thedoctorstv.com/main/home_page?init_type=Feature&init_id=659

[hava]

Start doing this pranayam, up to 30 minutes, twice a day. This will help to control the pain over the longer term. Do not stop before 16 weeks, as the effect is gradual.Also press the hollows on either side of the forehead, in a circular motion.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Anulom Vilom pranayam –
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.
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.
March 10 ,2011

[nancy99n]

First let me reassure you -- you will NOT die from Trigeminal Neuralgia.  This disease is a nerve that erroneously sends pain signals when there is no reason for pain.  It is usually caused by a blood vessel or vein pressing on the Trigeminal Nerve.  It can also be caused by Multiple Sclerosis.  

MRIs may not show the blood vessel or vein pressing on the nerve.  You need to find a neurologist or Facial Pain specialist that has experience with Trigeminal Neuralgia.  The type of MRI that you need is called a "thin-slice" MRI.  Even then, some people with blood vessels/veins pressing on the nerve do not show anything on the MRI.

Tegretol is usually given as a medication to help the doctor diagnose the disease.  If it is helping your pain -- great!  Be aware that with these medications (anti-seizure drugs are used for this nerve pain) that you must slowly increase to the medication level that controls your pain -- your doctor should tell you how to do this.  You should also wean off the medication in the same way -- slowly stepping down the dosage -- again your doctor should advise you how to do this.

A CAT scan is sometimes done to rule out any other disease.  TN is a disease that they diagnose via your symptoms and by ruling out everything else.  There is no specific test that will confirm it.

There are options -- one is to stay on the medication if it controls your pain and if the side effects are bearable for you.  There are many different anti-seizure drugs -- so if one doesn't agree with you, your doctor can try another one.

Another option is surgical procedures.  If it IS a blood vessel/vein pressing on the nerve -- the MVD is the best first choice -- it is the only non-destructive procedure and the results are usually long-lasting.  There are also other "destructive" surgical procedures -- Gamma Knife, Rhizotomy -- that basically damage the nerve so that it stops shooting pain signals.

Again-- the best thing is to find an excellent doctor that has lots of experience with facial pain patients.  Usually a large teaching hospital in the nearest big city that has a Facial Pain center would be the best place to go.

If you and your doctor decide a surgical procedure is the way to go -- you need to find an experienced neurosurgeon.

Get your pain under control with the medication.  Then take your time in deciding what to do and research the best options.

Some people try alternative medicine -- anything from chiropractic to accupuncture to low fat diets, etc.  But beware -- there are a lot of quacks out there that will take advantage of the unknowing desperate patient.

Wishing you all the best!