Hi . i am a new member ,suffering from GPN for more than a year. After medical treatment with Gabapentin and Lyrica with which i was like a zobby, for the past 10 months i am using Tegretol 1200mg and Cibalta 60mg. For the first time the 2 previous months i was feeling better and i was so happy!!!
Unfortunately seven days now thins change for the worst . Right now that i am writing these words i am in a very bad condition ,The pain come back stronger and stonger... I am really afraid . I have a terrible burning in my tonque , strong ear ache in both ears , the taste in my mouth is awful , electric vibrations at my neck headeche, whenever i talk the pain getting worst !!!! Also i am caughing usually at night.
What are youe symptoms ? I reall need your answer . The reason that i am sharing all these with you is because from the first moment i found this site you are like a family to me !
I will pray for all of you !!!
Sorry if my english are not so good ,I am from Athens Greece .
Trileptal(oxcabazepin) left me like that, emotionally dead. But did not help pain. side effects where extreme headaches, confusion, blurred vision, metal taste in mouth and smell. rapid weight gain. Only took it for 1 month with weekly increases in dose. But after 4 weeks I could not put that poison in my mouth 1 more day. The drugs are worse than the GNP. But the GNP is unbearable. I feel like I am living in a never ending nightmare. Gabapentin, I could not even walk. Lyrica, felt like my head was in ice water and blood vessels were breaking/popping in my head. This site helps to know we are not alone, but also seems there is no real hope for help or a cure.
I haven't tried Trileptal. Have taken Lyrica, no help and gave me headaches. Gabapentin, I was having periods of staring out in space and not realizing it. Caused alot of problems at work. Matter of fact I was fired thanks to good old Gabapentin. It have been on Neurontin. When my dose went above 1000mg it made me mad and agressive all the time. After that my neurologist smarted off to me that I can't take any meds so she doesn't what else to do and I don't have to come back of a year! Anyway I kept calling a nagging her. She finally prescribed oral lidocaine and when that did stop the pain she gave me the minimal dose of bacalon. It actually helped for the first two weeks. Now it just takes the edge off. I really need stronger dose or something new. Again Ice pick, I really enjoy reading about your experiences.
ice pick said:
Trileptal(oxcabazepin) left me like that, emotionally dead. But did not help pain. side effects where extreme headaches, confusion, blurred vision, metal taste in mouth and smell. rapid weight gain. Only took it for 1 month with weekly increases in dose. But after 4 weeks I could not put that poison in my mouth 1 more day. The drugs are worse than the GNP. But the GNP is unbearable. I feel like I am living in a never ending nightmare. Gabapentin, I could not even walk. Lyrica, felt like my head was in ice water and blood vessels were breaking/popping in my head. This site helps to know we are not alone, but also seems there is no real hope for help or a cure.
Trileptal(oxcabazepin) left me like that, emotionally dead. But did not help pain. side effects where extreme headaches, confusion, blurred vision, metal taste in mouth and smell. rapid weight gain. Only took it for 1 month with weekly increases in dose. But after 4 weeks I could not put that poison in my mouth 1 more day. The drugs are worse than the GNP. But the GNP is unbearable. I feel like I am living in a never ending nightmare. Gabapentin, I could not even walk. Lyrica, felt like my head was in ice water and blood vessels were breaking/popping in my head. This site helps to know we are not alone, but also seems there is no real hope for help or a cure.
Hey Candy, So the meds dont help with the pain?? WOW that really sucks - I cant imagine living with that pain.
It's a NO WIN situation for me - Dont take meds, lay on the floor with pain and cant speak. Take meds, have no memory but I can speak.
WIsh I could help you, Try a massage from an expert who knows the body well, mine says everything is connected, and I got some relief after a massage in which she got my muscles in my upper back loose
i am really that you have been fired from your work ! I have been away from my job from 3 months due to Lyrica and Gabapentin ,but my boss seems to understand.
I am stil in pain and because of Tegretol i feel tired and sleepy all day . Previous saturday i was sleeping from
14 : 00 hrs - 20 : 00 hrs ,too bad for my children and my husband.My kids feelling so sad about my pain and my husband is allways next to me no matter what but he really he dont know how to help me and that makes him angry.
What medication are you taking now ? Do you have pain at the back side of your neck ? Talking to each other make feel
better not from pain but in my heart .Waiting for your news ... hope you are better
Massage seems a very good idea ! Usually here in Greece doctors do not support this kind of cure , but my brother who lives in Holland suggest me exactly the same thing ! Give some more information where exactly are you making massage ?
candy said: i forgot to tell that i also gain weight , even if iam on adiet nothing seems to change. The only thing is that i was allways thin and i can take some more kilos .But friends and family who know me they can see the difference .
Any good diet ?
ice pick said:
Trileptal(oxcabazepin) left me like that, emotionally dead. But did not help pain. side effects where extreme headaches, confusion, blurred vision, metal taste in mouth and smell. rapid weight gain. Only took it for 1 month with weekly increases in dose. But after 4 weeks I could not put that poison in my mouth 1 more day. The drugs are worse than the GNP. But the GNP is unbearable. I feel like I am living in a never ending nightmare. Gabapentin, I could not even walk. Lyrica, felt like my head was in ice water and blood vessels were breaking/popping in my head. This site helps to know we are not alone, but also seems there is no real hope for help or a cure.
Candy, sorry I see you are not on Trileptal (Oxcarbazepin) which is a newer drug very close to Tegretol but does not cause bone marrow suppression like Tegretol. As I commented on your friend request. Still you need to talk to your doctor. Your side effects do not sound good/safe.
Hi Candy. I’m so sorry you’re not finding adequate relief. I’ve struggled with this monster for many years. Fortunately,I periodically have good stretches of time where the pain is very tolerable - but not today. I have pain deep in my ear, down my neck, in my throat (tonsil area) and a HORRIBLE taste in my mouth on the bad side. On days like this, I get in bed and into the fetal position and lay the side of my head on a hot water bottle. If I lay very still and don’t talk, I have some comfort for a bit. I’ve tried all of the usual drugs over the years without much relief and a lot of bad side effects. I hope you’re feeling some relief soon!
Thank you very much , for your reply and your advice. I will try the bottle with hot wate today . I am really sorry you are in pain today . Try to relax and lay on bed as much as you can . Also as you mention DONT TALK , this reduce the horrible
pain the ear and throat . Hope you are feeling better today , i would really love to hear your news . Waiting for you reply ! ikki D said:
Hi Candy. I'm so sorry you're not finding adequate relief. I've struggled with this monster for many years. Fortunately,I periodically have good stretches of time where the pain is very tolerable - but not today. I have pain deep in my ear, down my neck, in my throat (tonsil area) and a HORRIBLE taste in my mouth on the bad side. On days like this, I get in bed and into the fetal position and lay the side of my head on a hot water bottle. If I lay very still and don't talk, I have some comfort for a bit. I've tried all of the usual drugs over the years without much relief and a lot of bad side effects. I hope you're feeling some relief soon!