After years of remission, My atypical TN, secondary to two previous sinus surgeries, is back with a vengeance. Lyrica and indomethocin helped in the past. I am on Lyrica again. My primary care dr. is very understanding and compassionate. Her grandmother had TN. But I am looking for a good neurologist. I live in NC. I saw Dr Liedtke at Duke pain clinic 4 years ago. He can't see me again until late April. Also waiting on a referal to UNC Neurology in Chapel.
========
My wife was able to get in to see Dr. Snap at Charlotte Novant, in a relatively short time (under a month). Snap seems well grounded on chronic face pain. If you don't mind the drive, it might be an option. See also the "find a doctor" page linked under our Doctors tab above.
Regards, Red
Thanks, Red, I will call Dr. Snap's office.
I am also interested to know, for those of you who had periods of remission, did your pain come back suddenly or slowly over a period of time? And How many weeks, months, days, was a new med trial given to determine if it would work or not.
Penny, not to preempt anyone else's response, but I've been talking with chronic face pain patients for 19 years. I've heard about remissions that lasted from a few weeks to a few years, but the periods of remission most often are reduced over time. Likewise, I've heard about recurrences of pain that sort of "flickered" into existence over periods of a few weeks of intermittent pain, versus others that struck like lightning and at full force. I don't think there's a rule of thumb on what to expect.
Several of the meds in common use require tapering up or tapering down to change the medication level, change meds, or start a new med. As a general rule of thumb, I think you will probably observe whether you're going to be able to handle the side effects of a new drug within at most six to eight weeks after you reach the intended regular dose. If you have TN and not trigeminal neuropathy, a few days at full dose should be adequate to determine if you're going to get pain relief. The periods for other meds vary considerably but the bottom line is that it takes at least days to reach a stable level in the blood stream.
Hope this helps,
Regards, Red
I meant "... if you're going to get pain relief from Tegretol"
Regards
Richard A. "Red" Lawhern said:
I meant "... if you're going to get pain relief from Tegretol"
Regards
Thanks again Red for the info on meds. I am wondering how or why would trigeminal neuropathy vs. TN be a factor in the effectivenss of medication / tegretol?
Penny, the physiological mechanisms re different in neuropathy vs neuralgia. Tegretol is used off-label with neuralgia, a nerve inflammation issue. Neuropathy, however, seems to be associated with discrete injuries to the nerve rather than generalized neuralgia. Thus the chemistry of pain suppression may be different between the two.
Regards, Red
Red, Would the injured nerves, not be inflamed, thus making tegretol less effective.
Penny, neuropathy (injury to nerves) is more difficult to treat than neuralgia (inflammation). Tegretol seems to deal with inflammation pretty well, but other meds tend to be a better line of defense with neuropathy. Unfortunately there is no one size fits all solution for either. Some folks are medication-resistant or allergic. Not everyone reacts the same way to even the same med. I've counted over 70 medication types and combinations reported by patients with atypical or neuropathic pain. The first meds to try might be Amitriptyline, Nortriptyline, Lyrica or Cymbalta. It's a trial and error process, largely.
Sorry I can't offer something perfect and reliable. There just isn't such a beast, though many TN and ATN patients do find their way to effective medication management for face pain.
Regards, Red
Richard A. "Red" Lawhern said:
Penny, neuropathy (injury to nerves) is more difficult to treat than neuralgia (inflammation). Tegretol seems to deal with inflammation pretty well, but other meds tend to be a better line of defense with neuropathy. Unfortunately there is no one size fits all solution for either. Some folks are medication-resistant or allergic. Not everyone reacts the same way to even the same med. I've counted over 70 medication types and combinations reported by patients with atypical or neuropathic pain. The first meds to try might be Amitriptyline, Nortriptyline, Lyrica or Cymbalta. It's a trial and error process, largely.
Sorry I can't offer something perfect and reliable. There just isn't such a beast, though many TN and ATN patients do find their way to effective medication management for face pain.
Regards, Red
Red, Thank you for sharing your knowledge and insight. Your research and dedication to this malady is applauded and much appreciated.
Penny