I have been tentatively diagnoses with Trigeminal neuralgia while I wait to see a neurologist. So far only two bad attacks and several unit ones. Right now we are treating me with narcotics for pain. I also have psoriatic arthritis, had thyroid Ca- now removed and fibromyalgia. I take a biological drug and. DMARD for the arthritis as well as a few other meds. They are thinking about prescribing me tegretol. I already am on some Big Bang drugs, what can I expect from tegretol? My symptoms are numbness combined with hot, searing stabbing pain that runs above my lip to my nose, below my lip to my nose and under my eye, the pain is so excruciating- 1000 times worse than labour or arthritis pain. If tegretol will take care of that great but every drug has side effects and I am concerned that combined with my arthritis drugs I will be a zombie.
Tegretol helps,but it doesn't cure.It makes the pain less and somewhat bearable at least for a while.I don't know how it will combine with your other drugs.That may be why they didn't prescribe it already.My GP got it for me.Ask for the time release.I used the generic.KC Dancer and others recommend Lanocaine patches and have had great success.
Tegretol made me feel...drunk at first. It eventually leveled out enough that i could function, but at first it was a hoot. However, it almost immediately gave me some relief. I'm talking within the first day of taking first dose. (yeah i know the common concensus is that it must build up in your system...but for me it was almost immediate. maybe placebo effect?) ..so yeah, it was a side effect mess, but it made me hurt less. Good trade off for me...
Also, as Don said, there are several people here who advocate lidocaine. My pain is INside my mouth, so i get the viscous lidocaine "magic mouthwash". People who have pain outside on face use lidocaine patches
Not sure what all you are taking ..but what's working for me now is a cocktail of gabapentin, carbamazepine (tegretol), and baclofen.
The side effects are still there to a degree...sleepy/dopey-ness, inability to really stay focused, "losing" words..and so on and so on....but again, tegretol helped with the pain , for me, almost immediately...so if your docs are thinking of giving it to you, i'd say take it and see if it helps!
Wishing you peace and relief
~Mistee
I initially took Tegretol and it worked immediately, similarly to Mistee's comments above. Unfortunately, I became alergic to it and moved on to Gabapentin and Endep afterwards. Both Tegretol and Gabapentin made it really hard to just think; to string a couple of thoughts together was a good day. It did however get rid of the pain. May not fit into your lifestyle such as work etc. though. Once the pain stabilises, then look at moving onto removing any stressors or triggers from your life. Then it can become managable with trying different drugs that suit you best in collaboration with your neurologist. If your neurologist doesn't listen to you, or help you, get one that will. When you're on the drugs you can feel significantly disadvantaged working through the hospital systems, so be gentle with yourself and if possible get a friend or support along and let them know your wishes before hand. Sometimes appointments seemed very rushed and jump around making it difficult to keep up. Remember your the client, and take the time you need to get the outcome you need.
All the best, Smiley.
Can you get a script for topical Lidoderm face patches? You can keep a lower dose of tegretol on board if you get instant relief from the patches,… Saved my life!
Really lidocaine patches might work?? Do they need to be a certain strength?
Do they gave any systemic effects?
Have any systemic effects. Couple days straight of heavy narcotics will mess with your typing.
Lidocaine patches
in a very small batch of people here had a rash
Very small batch had no relief
BUT HERE…
Most get 12 hours of relief to
Some or much pain gone!
Comes in 5% strength
They work but aren't perfect. For me I use a 5% lidocaine gel and it does really good on breakthrough pain, but not so well for heavy duty pain, but better than nothing.
NorthernRN said:
Really lidocaine patches might work?? Do they need to be a certain strength?
Do they gave any systemic effects?