Sorry i havent been here in awhile just been a hard few weeks. On a brighter side thou i FINALLY got to see a neurologist. He wasnt a very nice man thou.He used words that i couldnt understand and when i asked him what he meant he told me to look them up.(i cant look them up because i dont know what he said) He told me that i cant be fixed but can have my pain under controlled by increasing my meds.once again.So now im at 1600mg of gabapetin 100mg of topiramate and 25mg of amitriptyline.
4 days after i saw him i saw my pain doc and he told me that if the amitriptyline dont work he wants me on Tegretol. Im so confused because im seeing these docs and each one is giving me different meds.i dont know who to listen to anymore.
Has any1 out there taken Amitriptyline or Tegretol..If soo what side affects do i have forward to look forward to.....
Some doctors can be really unpleasant , I wonder if it is when they do not understand or know enough about the condition themselves. Some of the drugs that on mentioned on this site I have never heard of, my doctors in the UK never mention them either. I am on Gabapentin and thats it apart from one other that I tried years ago and it made me ill. When I asked about different tablets, I did not really get a reply. Our NHS is free and being over 60 my medication is also. So I can’t really complain, but I still pay taxes and paid into the NHS all my working life. Cost here is all important they will not prescibe drugs that are expensive because of their budget, Do you feel you are getting newhere fast, it’s almost as if we are being told thats it you have to live with it. Sorry you have had a bad time recently, hope talking to us brings you some comfort Margaret.
Hi Marina
Amitriptyline to my knowledge is a Anti Depressent…I dont know why a doctor would say that if that didnt help he would put you on Tegretol?These are 2 different types of meds.I was given Amitriptyline to help me sleep and no other reason.I do know that Amitriptyline works well with anti convulsants and am sure this is why its perscribed with them as others may act differently with anti convulsants.I too was on a high dose of Tegretol 2000mg a day.
Hope they can figure out what works for you…Please research…ther are many different sites to get info on meds and interaction of meds and side effects.
Goodluck
Brian
Brian,
I did do the reasearch and was shocked to find out the amitriptyline was a anti depression.The neurologist asked me if i had trouble sleeping at night and i told him no i didnt and thats when he gave me them pills.I dont know seeing the 2 doctors are confusing me cuz they both have different solutions for me and i dont know who to follow…
Are u still taking Tegretol and if so how did u find it with ur pain… Marina
Brian said:
Hi Marina
Amitriptyline to my knowledge is a Anti Depressent…I dont know why a doctor would say that if that didnt help he would put you on Tegretol?These are 2 different types of meds.I was given Amitriptyline to help me sleep and no other reason.I do know that Amitriptyline works well with anti convulsants and am sure this is why its perscribed with them as others may act differently with anti convulsants.I too was on a high dose of Tegretol 2000mg a day.
Hope they can figure out what works for you…Please research…ther are many different sites to get info on meds and interaction of meds and side effects.
Goodluck
Brian
Marg…
Here i pay for my own meds, and docs dont care what they give u cuz its coming out of our pockets…Ive tried so many the last yr i think i keeped the drug store happy.Right now i see my family doctor, a pain doctor, and FINALLY a neurologist.And no i dont feel like im getting anywheres with my TN.I do have to say thou my family doctor did try his best for me.Im tired of being on pills im tired of trying new pills im tired of being in pain.
Margaret Gladys Mills said:
Some doctors can be really unpleasant , I wonder if it is when they do not understand or know enough about the condition themselves. Some of the drugs that on mentioned on this site I have never heard of, my doctors in the UK never mention them either. I am on Gabapentin and thats it apart from one other that I tried years ago and it made me ill. When I asked about different tablets, I did not really get a reply. Our NHS is free and being over 60 my medication is also. So I can’t really complain, but I still pay taxes and paid into the NHS all my working life. Cost here is all important they will not prescibe drugs that are expensive because of their budget, Do you feel you are getting newhere fast, it’s almost as if we are being told thats it you have to live with it. Sorry you have had a bad time recently, hope talking to us brings you some comfort Margaret.
I saw a neurologist for the first time today. She was thorough, delghtful and completely addressed all of my complaints/concerns in language that was understandable to me. I hope that you are able to find another neurologist fast!! You are the “customer” - you deserve to find a neurologist who treats you with dignity and respect.
Thanks linda…
Like u said dignity and respect…I must remember that when i see him on monday.If i get the same rudeness from him im going to walk out of his office and not look back.I need his help but well not be treated so awful…
Linda Moore said:
I saw a neurologist for the first time today. She was thorough, delghtful and completely addressed all of my complaints/concerns in language that was understandable to me. I hope that you are able to find another neurologist fast!! You are the “customer” - you deserve to find a neurologist who treats you with dignity and respect.
Thanks James…I dont know makes me wonder if these doctors here really know what they are doin.Or am i just a Guinea pig.At least my family doctor was honest and told me there wasnt anything else he could do for me.FUSTRATING i tell ya. Hope ur doing ok.
James Curley said:
Hi Marina,
Regarding amitriptyline and tegretol Ihae been on both-not at the same time except when I was switching from one to the other. They were the first 2meds I was put on back in 1992/1993. They were the only 2meds tht were available back then for TN. At least non-narcotic meds. Amitriptyline is indeed an anti-depressant-an old one-It didn’t do much for my pain but i could sleep-just very difficult to wake up. Cymbalta is a newer anti depressant that is used for TN and is effective with gabapentin-studies show it-so I am surprised that he put you on amitriptyline. Cymbalta is approved to treat diabetic neuropathy. Many meds have off-label uses, like the anti convulsants that are used for TN-like gabapentin. I am on lamictal now and it is working very well for me. Hope you manage to work things out. I can see why you would be confused. Take care, James
Hi Marina
No i’m not taking the tegretol anymore.Since my MVD surgery Jan 29th I’ve been pain free and med free just a short time after surgery.I was taking 2000mg a day right after surgery they reduced it to 1200mg and then every week after i reduced by 200mg until I was off it.I’m very fortunate as to my outcome so far (knocks on wood)…lol and hopefully will never need Tegretol again.Still pain & med free…today is Sept 22.I hope they can find a solution for you…Godbless 
Brian
marina said:
Brian,
I did do the reasearch and was shocked to find out the amitriptyline was a anti depression.The neurologist asked me if i had trouble sleeping at night and i told him no i didnt and thats when he gave me them pills.I dont know seeing the 2 doctors are confusing me cuz they both have different solutions for me and i dont know who to follow…
Are u still taking Tegretol and if so how did u find it with ur pain… Marina
Brian said:Hi Marina
Amitriptyline to my knowledge is a Anti Depressent…I dont know why a doctor would say that if that didnt help he would put you on Tegretol?These are 2 different types of meds.I was given Amitriptyline to help me sleep and no other reason.I do know that Amitriptyline works well with anti convulsants and am sure this is why its perscribed with them as others may act differently with anti convulsants.I too was on a high dose of Tegretol 2000mg a day.
Hope they can figure out what works for you…Please research…ther are many different sites to get info on meds and interaction of meds and side effects.
Goodluck
Brian
Hi Marina, I don’t like the sound of your neurologist, he sounds very arrogant. Here in the UK amitriptyline is used at lower doses fairly frequently for sleep problems or nerve pain [around 20-50mg]. It is used for depression at higher doses [around 150mg]. Apparently it has fewer side effects than other drugs and can be used safely for long periods.
hello my name is Susan and i ve been on tegratol for 1 year . it has worked really well for me . ya do have to get blood work done every so often . side effects were minimum for me . it is the only med i take . Except when the pain really acts up then i have pain killers . but they are far and few thank goodness . i have found it to be my solution for as long as it keeps working . good luck to you
First i was on Baclefin (might not be correct spelling). Worked but that was at the very beginning of the pain episodes. They subsided to the point that I stopped the meds. Then it hit me again several mos later. Saw another neurologist & he put me on Tegretol. Helped for awhile. He told me I would eventually be able to ween myself off the meds but that never happened. I should say they did stop the “electric” spasms that ran down my face. But lately I am having “breakthough” pain. I take so many pills I am “stupified”. The Tegretol makes me tired, gain weight. I actually forgot what day it was a month ago. I have now considered “Cyber Knife” which is a non-invasive procedure mostly used on cancerous tumors. There has been some success with TN patients although only been used the last 3 yrs. I figure I’ll try this before surgery & hopefully I’ll get off the meds. Just keep looking for a dr you like & that specializes in TN. That’s the most important point. Check into Cyber Knife & check out “Johns Hopkins Hospital” site. They have a TN page that talks about this disease. Educate yourself as much as possible. I’ve had this for 3 yrs & I’ve done so much research I feel like a specialist! (lol).
I too was on amitriptyline for a while. As with so many meds, it didn’t help. For some reason, they do believe that it well help relieve the pain in some way. Never quite figured that out.
I take Tegretol now (And have for many years, as it’s the best I have found for my pain relief). It had side effects when I first started it-mainly just being sleepy. My family would laugh when I took my medicine and tell me to prepare for my nap, because it never failed that I would take one about an hour after medicating. Some people have told me it causes them to be in a fog, but that was never a problem for me.
As for your neuro, if she’s going to talk down to you like that, maybe you should find another. Your doctor should treat you as a partner in your health care, not as an underling. As others have said, remember, she works for you, not the other was around.
Good l uck.
Well i have to say i decided to stop taking Amitriptyline…I found that this pill just made me so tired. I even took the pillat super time thinking that it would not make me so tired the next day.But it still made me feel wore out.All i wanted to do was sleep and when i was sleeping i didnt want to wake up…i started taking 200 Tegretol at bed time.and cant believe the change .The pain has decreased .I was able to spend a full day out side with my son yesterday even thou it was windy out.usually the wind bothers me but not that day.I still have some pain BUT not as bad.I have to increase the Tegretol tomorrow.Im HOPING this is FINALLY the end of my pain.
Keep ur fingers and toes cross for me…
MARINA
Nancy i decided to stop seeing that doctor…i saw him once more and instead or turning his rudeness against me…He started against my 10 yr old son.Look at him and told him he was to fat…Needless to say i wasnt to happy with him.SO im staying with my pain doctor since he put me on Tegretol and following him and my doctor.The only good advice i got from this asshole was that i can increase my Gapabetin Because my doctor didnt think i was able to.
Nancy Price said:
Hi, I was on amitriptyline years ago for depression. I could not take it. My house could of burned up and I would of slept threw it. I told the doctor I wanted an anti depressant that didn’t make me tired or gain weight. Having TN is hard. I was told they give anti depressants to people with chronic pain. It helps. Can you change doctors? You need a doctor who isn’t an ass. Take care. I was thinking about you.
marina said:Well i have to say i decided to stop taking Amitriptyline…I found that this pill just made me so tired. I even took the pillat super time thinking that it would not make me so tired the next day.But it still made me feel wore out.All i wanted to do was sleep and when i was sleeping i didnt want to wake up…i started taking 200 Tegretol at bed time.and cant believe the change .The pain has decreased .I was able to spend a full day out side with my son yesterday even thou it was windy out.usually the wind bothers me but not that day.I still have some pain BUT not as bad.I have to increase the Tegretol tomorrow.Im HOPING this is FINALLY the end of my pain.
Keep ur fingers and toes cross for me…
MARINA
Wow been a whole month since i been here last and i started the Tegretol…Worked for the month and once again im here with pain yet AGAIN!!!..God will i ever get rid of this…