What medications do you use and how effective were they? Did any give instant relief? If so, if you tapered off were you cured?
there is no cure.... there is only remission if you are lucky, come and go.
Instant --- YES for many -- Prescription Lidocaine Patches --- cut them up and put them on your face.... helps up to 12 hours, to hold pain away, or make it less.
I am putting here the link that I gathered here in 2 years - of meds that people like/love/helps . Sometimes its a combo.
Sometimes its a pill plus a topical med.
After you read this list or print off for your doctor - neurologist that HAS TN patients already.......!
Then run and get the book
Striking Back - By Dr. Ken Casey
THE MORE you learn and read and ask, the sooner you will feel better in most cases.... you have to guide your own treatment because we are too rare....
Also look up at the tab for Doctors -- and see if any in your area = sometimes you have to travel to get a good TN doctor.
Read/Learn/Ask/Repeat --- this is THE best site for help!
Trileptal gave me almost instant relief. Tegretol was first option but was having bad reactions. Massive doses of Neurotin proved little help.
I take Amitriptyline and no I didn't have instant relief. I have worked my way very slowly up to 40mgs over a month. I was still getting attacks. Once I was at 30mgs I started noticing a difference. Now that I am at 40mgs I have finally had 5 whole days in a row with zero pain!!!!!
My first attack was eight years ago. I was put on Amitriptyline that time too. I stayed on it for two years because I was so nervous about the pain coming back. I finally went off of it because I wanted to get pregnant. The pain was gone and never returned until this year. Dealing with this again after so long is very disheartening to me. I guess I am lucky in a way though because I had so much time between attacks.
Everyone with TN is very different. Our symptoms, the patterns of pain and our response to meds. There isn't an easy fix! Information is power and finding a doctor or specialist that will take it seriously is paramount..
Tegretol gave me relief within the first day or two- I cried in relief one the “killer shocks” went away.
When I was first diagnosed and given my tegretol, I felt normal after just 8 hours! Now I have had to increase a few times and I am currently having some trouble, but it's tolerable. And there is no cure for TN. You can go into remission sometimes, but there is no cure.
I'm doing really well with time release oxycontin 15mg twice a day for type 2 pain....as scary as they sound.
I also take 100mg nortriptyline (50mg in morning and 50mg at night), 120mg cymbalta (60mg in the morning 60mg @night) and have 5mg percocet for breakthrough pain.
It wasn't until after MVD and after the pain came back that I got the oxycontin, they don't just dish them out, but my neurologist gives me 3 prescriptions at a time to cover 3 months so I don't have to worry about running out.
So far the best 2 drugs I've tried are the nortriptyline and the oxycontin for type 2 pain. I've tried neurontin and trileptal but they weren't for me.
I have heard here many times…
Marijuana…calms the nerve = lessens the pain
Yeah, heard it. Lol
Yeah Kc there are a lot of articles on pubmed about it's positive effects with neuropathic pain.
I just renewed my medical card last week(good for another year, cost $75). Basically you just show the naturopathic doctor your prescription meds for TN and they give you a piece of paper that lets you shop in retail stores that sell cannabis. They even have refillable e-cigarette type vaporizers that have cartridges of cannabis oil commercially produced somewhere which is odorless and smokeless and still does the trick.
I just want some legal brownies here in the Midwest! grrrrrr
I'm in the "professional world" and cannot be finding myself on the news in a
rally, or caught signing petitions. grrrrr
Hi tulips, are you taking the extended release Tegretol or the regular (I think chewable ones)? I’m curious if one works better than the other. My Dr. Prescribed the extended release capsules but while I was waiting what turned out to be two aganozing days to get it straightened out and filled at the pharmacy I borrowed a few chewable Tegretols from my spouse. They seemed to work faster on the pain but I am noticing that the ER pills do bring me down to a dull roar during the day.
Well, I take carbamazepine, gabapentin, and effexor, plus Tylenol as needed. Not sure why Tylenol takes some of the 'thick head' symptoms away, but whatever, as long as it works! Oddly enough, I read on this site that Xanax cured someone's symptoms right away, just killed the pain. I haven't taken it for a couple of years, but when my Type II Trigeminal Neuralgia started, I was mostly dizzy, and had some ear pain which I thought was an earache. My doctor also thought I was depressed and prescribed xanax for awhile. For whatever reason, it did help quickly but not long-term.
YAY for epitol (generic tegretol) when i had my first attack four months ago it took pain away in a few days... I took only 100 mg twice a day -- weaned off the past few weeks--so far so good... hoping for a long remission....
When I tried carbamazapine I had nearly instant relief. Unfortunately, I couldn't tolerate the side effects. As soon as I went off, the pain came back. So, no, I wasn't cured.
Now I'm on 3600mg gabapentin per day as well as 450mg of oxcarbazapine. This has helped some but I'm still in pain. Additionally, I'm having some weird side effects. My short term memory is shot and I find it very hard to get the right words in conversations. I have to grasp and often time can't even come up with a synonym. Very irritating.
I'm on 2400 mg gabapentin. I take Aricept, which has improved my short term memory and even helps with being able to find the right words.
Laura Oregon said:
When I tried carbamazapine I had nearly instant relief. Unfortunately, I couldn't tolerate the side effects. As soon as I went off, the pain came back. So, no, I wasn't cured.
Now I'm on 3600mg gabapentin per day as well as 450mg of oxcarbazapine. This has helped some but I'm still in pain. Additionally, I'm having some weird side effects. My short term memory is shot and I find it very hard to get the right words in conversations. I have to grasp and often time can't even come up with a synonym. Very irritating.
Yes Carbamazepine (tegretol) Gave me relief in a day or so Im on Extended release, the doc gave me a high dose and I couldn't handle the high dosage and cut back to 100mg a day, and with the extended release it working so far, however I know that I will have to up it before to long but even if I up to 200mg a day Im still on a lower dose that prescribed in the first place, It took me a week to get over the spacy feeling, and once my body adjusted i feel fine other then by 8 or 9 pm im ready to pass out,of course that could just be my old age and not the meds LOL and No I have not been tapered off Here"s wishing you all a pain free day
Lyrica gave me almost instant relief. After a few small increase in dosage I am now almost completely pain free, for the first time in two decades! It was simply amazing.....I didn't realize how bad my life had gotten until this burden was lifted.I also use a but of medical mj, I prefer it to the heavy narcotics and it works well for me. But I don't need as much of that anymore either. The lyrica does not give me the bad side effects like tegritol or any of the other meds I had tried, most of them I could only take for a few days. They gave no relief and added much suffering with side effects.
I have ATN. My doctor wants me to start the ER, 200 mg, one in the morning and two at night. I've been on Neurontin, 800 mg 3X day, and baclofen, but it doesn't seem to be working as well. Since I've tolerated the Neurontin so well I thought about adding another 600 mg before starting the Tegretol. I'm in a wheelchair because of a disability, ataxia. I don't have any balance. I'm concerned about taking the Tegretol and already having no balance, along with the other side effects. I'm holding off as long as I can. I've seen it in SR form. Do you know the difference, which one is better?
Ted said:
Yes Carbamazepine (tegretol) Gave me relief in a day or so Im on Extended release, the doc gave me a high dose and I couldn't handle the high dosage and cut back to 100mg a day, and with the extended release it working so far, however I know that I will have to up it before to long but even if I up to 200mg a day Im still on a lower dose that prescribed in the first place, It took me a week to get over the spacy feeling, and once my body adjusted i feel fine other then by 8 or 9 pm im ready to pass out,of course that could just be my old age and not the meds LOL and No I have not been tapered off Here"s wishing you all a pain free day
I take Carbamazipine, Baclofen and lyrica. Carbamazipine took 2 days to build up in my system, Lyrica was instant (within an hour) and baclofen helps and did help quickly for breakthrough pain. I also take b50 complex which seems to help as well.
I have been on tegretol for 4 weeks now and very low dose doc put me on 100mg twice a day for 7 days and the. 200mg twice a day after that I have not gone above 100mg a day yet personally if I get relief on less i take less and so far 100mg a day has worked just in the last couple days I have gotten a few shocks very little so I may move up to 200mg a day now mine are extended release, All I can say is for me it has worked and I am greatful