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Trigeminal Neuralgia

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Chronic Pain
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Posted 7/22/2008 1:30 AM (GMT 0)

My daughter was recently diagnosed with Trigeminal Neuralgia after a terrifying experience.  She started experiencing severe pain inside her mouth on Friday night and by Monday morning we had made two trips to the ER, seen a dentist and a ears, nose and throat specialist. The pain started in the roof of her mouth and traveled to all her teeth. 

The pain was so severe, she was practically screaming in pain.  They ran many tests and at last had a diagnosis for what she was experiencing.  She is on pain medicine ( percocet ) and neurotin. 

My question to anyone who has any knowledge on this condition is - what do we do if she feels another attack coming on?  We've yet to find a proper doctor - we really don't know which way to turn.  The ears, nose and throat specialist didn't seem to have much knowledge on the condition.  Any advice?

Posted 7/22/2008 1:45 AM (GMT 0)
Hi, Michele. I did a quick search on the internet and found a couple of sites that might help you. I think it's okay to post the sites here.. I can't figure out how to put a link in, so I think you'll have to copy and paste them into your address bar.

http://www.fpa-support.org/

http://www.upmc.com/Services/MinimallyInvasiveendoNeurosurgeryCenter/OurPrograms/CranialNerve/trigeminal.htm?gclid=CP7Tt4-u0pQCFQZlswodCWxulw

I wish I had more to tell you, but hopefully someone will be along here soon with something else. I am sorry to hear you had such a scary time and that your daughter is suffering so much. What a blessing that she has you!
Posted 7/22/2008 2:17 AM (GMT 0)
Hello, Michele,
Welcome to the HW forum. I believe there are some older threads (topics) on this, and if you put the diagnosis in the search box, you may find them, along with more information from people who have had this condition. I'm not a doctor, but my guess is you need at least a neurologist, or someone who specializes in this condition. Who did the doctors you've seen refer you to? I don't know if you're in a city or a rural area, and how many choices you have. Often going to a teaching hospital that specializes in this is helpful.

Your daughter is on two medications which should at least help manage the pain to some extent. Her doses may need adjusting in the future, as they probably started her on a lower dose.

Hopefully someone will come along with more knowledge of TGN.

Wish I could help more.

PaLady
Posted 7/22/2008 3:16 AM (GMT 0)
Hi Michele: I have TNA along with a lot of other painful crap. I have been to every University Hospital and even to Israel. There are medications and Gamma Ray procedures but i fear the Gamma. Injections made my facial nerve go nuts. Can You pinpoint what cause the attacks? Cold, hot, etc.
My facial nerve acts up if i get a sinus problem ( common cold ) the pain from this is rated one of the worst pain a person can experience.
If i can help in any way PLEASE contact me [email protected] I do belong to several support groups for this problem. tom
Posted 7/22/2008 5:53 PM (GMT 0)

Hello Michelehere,

I am so sorry to hear that your daughter has TN.  I have it and the pain can truely be excrutiating.  Besides the pain meds the only things that I found help to ease the pain was to eat only soft foods, talk as little a possible and try hot or cold packs.  Tell her not to clench her jaw and to relax as much as possible.  Eventually the pain will subside.  Check out the site for the Mayo Clinic.  Whenever I have a medical question or want to do some research that is usually the first place I look.

Posted 7/24/2008 3:02 PM (GMT 0)
Hi MicheleHere,

Whatever you do, don't have any teeth of your daughter's extracted. I was misdiagnosed for years and had a numerous root canals and an extract of perfectly healthy teeth (and endoscopic sinus surgery to boot!) until a dentist suggested that I might have TN. You seem like you are on a good track with the information you currently have and even maybe a proper diagnosis in place ( I wasn't diagnosed until years after the pain and now it has turned to chronic TN- always nervy, burning, aching etc.)

Pain narcotics and anti-seizure meds are the routine prescription course initially. Make sure she gets an MRI. That may show where a nerve is touching the TN nerve (sometimes it wont show anything and you can still have TN).

Good luck. TN is a horrific condition but it can be stabilized on the right prescriptions and you are catching it early which is an added plus. I will keep you and your daughter in my thoughts and prayers.
Posted 7/26/2008 4:00 AM (GMT 0)
Gamma And Rigby : Sorry you have the same facial nightmare. My nerve problem came from a blow to the side of my face ( Auto Accident) which severed my nerve. After surgery I was left with the attacks. When extremely painful ( No pain med has ever helped ) i am alway left with the inability to talk some times for 48 hrs do to spasms. do you have facial spams/ ticks if so any remedy other than medicine-- I want to go holistic if possible i have grown tired of poisoning my liver and kidneys with prescription meds. Any advise please let me know tom-in-pain
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