I had type 1 TN and started taking Neurontin 100mg daily, and this helped with the pain greatly (about 2 weeks ago). Over the course I have had to raise it to twice daily, and now the prescribed three times daily. This medicine just doesn't seem to be working anymore, and it seems like too short of time for that to occur. Not only that, the pain seems to be in my jaw up by my ear, like a TMJ pain, but then my cheek feels like its on fire and it's more constant (but not at rest, still with stimulation). . I'm not getting the electric jolts I was getting, I just always feel like i'm on the verge of one. The pain almost feels like I've gone from TN1 to TN2 (which is what it was on my first round with TN). Anybody else have this with this medication or switch back and forth between TN1 and TN2?
I've had it with this stupid pain! I wish they could find a vessel so they could operate already!
I started with tn1 pain, once i was on the meds i changed to tn2 and have pretty much stayed that way. I sometimes wonder if it is the medication that makes it change to tn2. I have been on tegretol and now lyrica and they both have done the same thing. If I skip a dose, the tn1 comes back.
I have also had it with this crap, I want to go back to work and get off these meds!
I hear you! I'm still working, and was really hoping to keep the dosage down, and stay with the neurontin. How is the lyrica? Does it leave you groggy, does it work better than the Neurontin. Hope your feeling better soon!
I am only on 50mg a day, i have some pain but can handle it. I need to get back to work I am bored out of my skull and going broke. I have a rhizotomy on friday, then possible surgery at a later date. I hope like hell this works, my neuro doesnt even know yet that it started on the left side now. I am really tired on the Lyrica and my vison is off, its hard to explain, its like tunnel vision , i gained weight on it, which pisses me off, I just lost 30 lb, shit now its back. As for groggy, yeah , I only have a couple of hours a day that I actually feel awake. Hope you feel better soon too
Hope you're feeling better. One thing that I can count on with my TN is that I never know what to expect and it has been changing tricks frequently. I tried to switch to amitryptyline this weekend, but it was like poison to me and I'm sticking to neurontin for now. I take 2400mg of neurontin and it doesn't do much good. The symptoms of burning, shocking and numbness are much less, but the pain doesn't respond to it. I get a lot of ear and tooth pain. I tried to get gamma knife surgery but surgeon told me it would not improve my condition. Before neurontin, I used to feel like I had a sunburn on the inside of my face, or that I'd burned the inside of my mouth with a boiling liquid.
The small dose of amitryp I took made me pain free for 24 hrs! but I was in a terror/panic, woke up not knowing what day it was, dizzy, freaked, etc.
TN has so many aspects! it's so personal to each person and so are the effects of the meds. I like you, I am so sick of it. Hoping you get some relief very fast.
That's how I felt the first morning I woke up after taking the Neurontin (no terror, just disoriented, didn't know what day it was), but I've stuck with it. I'm just wandering if Lyrica might be better, or if it's just another version of Neurontin.
Sometimes with meds like Elavil they take a while to build up in your system. If you were pain free for 24 hours, it might be worth giving it another shot, see if your body gets used to the side effects. I've read a lot of people hate and a lot love it, so you never know. I do know that any med is going to hit you pretty strong at first (In my experience).
I too started out with TN1 and since being on Neurontin now have more of the burning /aching and ear pain of TN2 I now have those symptoms on both sides It started out on the left and now I have TN2 pain on both sides with mild shock on the left side very rarely, I started out on 300mg of neurontin a day and went to 600mg a day I am now going up to 900 MG of Neurotin. You may need to increase the amount of neurontin you take I have heard of people being on more than 2600mg a day of neuronin a day. I take my three times a day 300mg in morning, afternoon, bedtime it helps to keep a level amount in the blood I have been told instead of taling it once a day . My doctor talked about adding a antidpressent to the Neurontin Some of the anitpressant like elavil (amitryptyline) or cymbalta are supposed to help. I am thinking about adding the cymbalta because I think the side effects are less then elavil. I have shyed away from taking tegritol because of the greater chance of side effect and liver damage verus the neurotin with less side effects. You are on a very low dose of Neurontin try increasing the Amt. or adding the antidpressants. I heard that cymbalta helps with the burning aching pain of TN2 I am also going to typ an herbal suplemment called Mylem Sheath Support I just ordered it. The best thing to do is do your research on the internet about all the medicines and their side effects plus Buy a book Called Striking Back it is all about TN it is a very good resource for information. as well as this site and the FPA-support.org site. The book striking back helped me to understand TN a lot better it describes a lot of the medicines and surgical procedures and naturalpathic treatments as well.
God Bless you and Good luck I am in the same boat as you if you would like to talk to someone or receive a call send me your Phone# in a private message
It took me a while to get used to the neurotin you have to up the MG gradually the same with any medication it took me about 2 weeks or more to get used to it now the only problem I have is sleeplessness
3.
Catherine said:
That's how I felt the first morning I woke up after taking the Neurontin (no terror, just disoriented, didn't know what day it was), but I've stuck with it. I'm just wandering if Lyrica might be better, or if it's just another version of Neurontin.
Sometimes with meds like Elavil they take a while to build up in your system. If you were pain free for 24 hours, it might be worth giving it another shot, see if your body gets used to the side effects. I've read a lot of people hate and a lot love it, so you never know. I do know that any med is going to hit you pretty strong at first (In my experience).
Is that the Neurontin!? I was wonder why I couldn't sleep at night! I am also taking Klonopin at night. I was prescribed 0.50, but I'm only taking half, it was leaving me to tired the next day. I thought the Klonopin should knock me out , but it doesn't! I can't fall asleep at night, and then when I finally do, I don't want to get up in the morning!
I also went from TN1 to TN2. My TN2 is so much milder then the TN1 so I prefer this and can cope with it. Hoping TN1 never returns and TN2 doesnt get worse! Catherine Amptriptyine worked for me in helping me to sleep and took away the burning in the temples which I had at night.
Yes, the Lyrica is still expensive, even with insurance. For my insurance, it required a special approval indicating that you failed the other options (e.g. Neurontin, Tegretol). My main issue with neurontin was memory problems.
I have mild weight gain with Lyrica, depending on what other things I've been on with it, and I get sleepy after my daytime doses. It also makes me a little dopey -- not as sharp as I usually am and less personality, my friends say. But my brain works and that makes it possible for me to do my job. Some of the other drugs such as Tegretol made me completely non-functional, and didn't seem to work any better.
I have never had TN1, I have constant pain most days, except when I'm sleeping.