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trigeminal nerve syndrome

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Posted 9/18/2010 1:56 PM (GMT 0)
Anyone out there with trigeminal nerve/burning mouth syndrome?

radles

( I added a title to your topic)

Post Edited By Moderator (Dani Henson) : 9/18/2010 9:25:54 AM (GMT-6)

Posted 9/18/2010 5:32 PM (GMT 0)

   Hello Radles! Welcome to the CP forum!

   I have never heard of this condition before, but did post a link here for you or other members so they can read up on it.

      I'm not sure if we have a member suffering from this either, but maybe someone will come along and share with you their experience on it.

   Have a great day!

     SE wink

http://www.aafp.org/afp/2002/0215/p615.html

Posted 9/18/2010 10:55 PM (GMT 0)
hey radles, trigeminal neuralgia is one of the most severe acute pains know to man. it is hard to diagnosis that condition. usually a neurologist makes the diagnosis. carbamazepine [tegretol] was put on the market in 1962 specifically to treat trigeminal neuralgia. it seems the the attacks are brought on by different triggers and there are hints you feel to know when a attack is coming on. when you feel it may be coming on one of the most popular treatments now is right away start a high dose of a prednisone or methylprednisilone type steroid to abort the attack. a preventative matinence drug is tegretol [a little harsh], trileptal or neurontin. when the attack has started you need potent narcotics like hydromorphone or oxycodone. ther are interventional things like nerve blocks that can be done. good luck
Posted 9/19/2010 2:48 PM (GMT 0)

Thank you all so much for your replies, it is great to get some feedback, and just to know that there is support out there helps so much.

Fortunately for me I don't have the shocking electric stabbing type pain those with TMJ get, but I do have extreme and continuous pain in my mouth and jaw 24/7, it just never stops. It has been 6 years now, and there is no relief from it. My condition is 'Burning Mouth Syndrome with Trigeminal Distributions', and I am hoping that it does not develop into TMJ.

What amazes and distresses me is the incredible pulling/crushing sensation the Trigeminal Nerve causes me to feel in my jaw, the sensation is like my head is in a grid, it is hard to describe, but it is awful.

I take Lyrica, Cymbalta and a Xanax at night. The Xanax gives me just enough relief to doze off to sleep.

I feel for all of you out there suffering chronic pain, I have read many of your stories and am amazed how well you all manage to cope.

Many thanks again, I am glad to have found this site.
Posted 9/19/2010 2:50 PM (GMT 0)
Thank you SE, I am just reading the link you posted.

Radles
Posted 9/19/2010 4:52 PM (GMT 0)
good morning, sorry it's not morning now; good afternoon. remember trigeminal neuralgia is a cranial nerve issue so i don't think it could directly cause TMJ pain. TMJ is a joint problem and not as much to worry about as trigeminal neuralgia. are you getting any effects whatsoever from the cymbalta and lyrica? if not a long course of high dose steroids may get you over the hump. Medrol [not the medrol dosepak because that not enough] at a high taper down dose for 3-4 weeks may work wonders. Decadron with the same dosing may be even better. Decadron [dexamethasone] is commonly used for nerve inflammation problems eg. spinal cord injury. some people with your problem are given steroids to keep on hand so if you feel it coming on you head it off by starting the steroid course, this pain is hard to control when it has already flared. you mention Xanax for sleep which is a good thing but Klonopin or Ativan may be more effective because they are indicated for the treatment of nerve pain in general and klonopin is longer acting than xanax. Lyrica is probably good for TR but you can consider Trileptal which is basically Tegretol without the effect on red blood cells, so you do not have to have blood draws every 6 months. Trileptal is very popular for trigeminal neuralgia and many people get great relief from it. a medication you could add in with your xanax/klonopin at sleeptime is Gabitril [tiagabine]. it is fairly safe and can prevent the nerve from flaring and it improves sleep patterns. a strong narcotic on hand for when it's bad is a essential: oxycodone, hydromorphone, or immediate release morphine, this pain takes a big gun. try to avoid pain killers like vicoden or percocet because they contain acetaminophen, that combine with your cymbalta is liver toxic. have a pain-free sunday.
Posted 9/19/2010 9:55 PM (GMT 0)
Wow, you have a great knowledge, thank you SS. I don't feel that I have been offered much pain relief at all, and sometimes I have wondered if the Specialist realises just how much pain I really am in, maybe I am just not conveying my feelings strongly enough. I was just told to take a Tramal occasionally when the pain is bad, but it is bad all day long! I was given Lyrica only at first, then eventually Cymbalta was added a year or so later, there has been no mention of any narcotics etc by the pain clinic Specialist.

My GP has mentioned Ativan somewhere along the way, I shall follow up on that one.

Apparently something has caused the nerve to not function properly, some microscopic change, and the Lyrica is used to hopefully one day calm the nerve down, it could take years for it to work, the time factor is the unknown part. The Psychologist tells me that there is no cure on the horizon, and a miracle is the only hope! So depressing to hear.

I shall enquire about steroids next visit, so thank you for enlightening me, that is what is great about this site, all the alternatives you hear of, and the drugs that are not so safe. I once had liver changes from Tolvon, but it went back to normal once they withdrew the Tolvon. I think it has now been taken off the market for that reason.

Thanks again, I feel loaded with new questions for my Specialist. How bad is your pain from the Laminectomies? I shall have to google Foraminotomies, don't know what that is.
Posted 9/20/2010 12:29 AM (GMT 0)
the pain from the laminectomies is pretty bad when it flares up. it is inflammatory in nature and weather changes effect it. i'm fused now so it's a bit different, it's basically severe inflammation around the whole surgical area and i have painful neuropathy in my right foot from nerve manipulation during the fusion surgery. foraminotomies are a decompression of the neural foramina which are the holes in the sides of the vertabrea where the spinal cord branches left and right at the different levels ex: the sciatic nerve.
Posted 9/20/2010 12:34 AM (GMT 0)
Hi Radles,

Welcome to HW!

I have trigeminal neuropathy, among other things, which causes me chronic, severe pain behind my right eye. It all started with an injury 4 years ago. I have been to many doctors and tried every medication imaginable, with no results. However last year my neurologist referred me to a neurosurgeon for a consult for a peripheral nerve stimulator (PNS). A PNS is the same device as a SCS (spinal cord stimulator), except it is attached to peripheral and cranial nerves, instead of spinal nerves. After a 6 mo battle with my insurance company, in July, I underwent a trial of a PNS attached to the trigeminal nerve. My trial resulted in a 50% reduction in pain, and so a week later, I had the permanent system installed.

The battery for the system is implanted in my chest, and the leads are attached to the supraorbital and infraorbital (ophthalmic) branches of the trigeminal nerve. While the stim doesn't take all my pain away, it does make a significant difference most of the time. I could not be more thrilled with the results of the stim. I run it 24/7 & it gets me down from a 7/8+ to a 3/4/5, most days. It doesn't help all the time, but I am so thankful when it does.

I wonder if you might be a candidate for such a device. There are other branches of the trigeminal, as well as other nerves in the face that can be used for PNS. I did extensive research on the topic before I even considered going through a trial. I'm not sure if any of my research addresses cases such as yours, but I'd be happy to share what I have with you. My email is listed under my profile, so feel free to email me.

Hope you find some of this helpful.

hugs,
Skeye
Posted 9/20/2010 2:11 PM (GMT 0)
Hi SS
I can't imagine what you go through with back pain, let alone the surgery, how did all your troubles start?

Hi Skeye,
Thank you for your response, I would be very grateful if you didn't mind me emailing you, I would like to also learn about PNS. I have not heard about any of these devices till I came across this site. I am not sure I am brave enough to have an implant, but then again, anything for some relief from this hidieous, unrelenting pain.
Talk soon,
Radles
Posted 9/21/2010 3:10 PM (GMT 0)
Hi Radles,

I have Atypical Trigeminal Neuralgia/Odontalgia/Atypical TN going on 11 yrs. now. It is a living nightmare. I cope, but that's about it. I've been on every med imaginable. If you would like to talk more in depth about your condition etc. shoot me an email. Would love to hear from you.
Posted 9/22/2010 3:59 AM (GMT 0)
Hi ER, Would love to talk more, shall email you, thank you. I am with you, I cope and that is about it!
Radles
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