I was diagnosied in August. Been on Neutotin since then. My primary care md. is afraid to treat me, therefore when I have break through headaches left side I have nothing to relieve me. He said I have to go to neurologist to go forth with disability or even early social security. I am at my wits end. I cant work and I am depressed.. You will be in my prayers as all whom suffer with this dibiliating disease. What bothers me so much is that we look normal, so therefore nothing is wrong with us. What do we do....?? Renee
Laura, I understand where you are, it is something that I would not wish on my worst enemy. I was told that the max. dose of neurotin is 3,200mg per day is max dose. I guess different mds. different doseage, I dont know. I just know I am with you. There are so many people of support on this site. All we can do is the best we can, noone can expect any more!! Sincerely Renee
Jackie said:
I take Gabapentin me, it works very well for my TN. I take 2700 mg. But after reading the other answers I see the usual mix of reactions and side effects many report. As there are over a dozen meds to take for TN, it's often a case of try see. The first few days can be weird, I "fairground" as in my head swirls if I make sudden head movements. But I generally sleep well.
mack said:
Do your due diligence on neurontin. Gabapentin is the forerunner of Lyrica. I was diagnosed 10 years ago and there aren't many medications that I haven't tried. I kept track until I reached the 25th drug prescribed for me and I quit counting. My experience with gabapentin was alright, but nothing to get excited about. If you have insurance that will cover it, ask your doc about Lyrica and if your doc is willing, give it 3 months and see how it works for you. I am fortunate enough to have a doc that truly understands TN and what it can do to a person. He and I experimented with the old school meds prescribed for TN and nothing ever came close to relieving my pain...and then came Lyrica. When I added Lyrica to my regimen I could feel a difference. I have titrated (with Dr. approval) my Lyrica up to 1500 mg a day. A massive dose by some standards, but it has made a tremendous difference to me.
redbird2448 said:
Just start by taking a small dose at night while you sleep.
I doubt you will notice it unless you take about 300 mg. Sometimes a little sleepy in the morning.
One hundreds till you get used to those, about every six hours. It really helps, and I feel totally normal on it now.
I take one hundreds every six hours during the day and then a bigger 300 dose when I go to bed.
works like a charm for me.
Hi Redbird, how long have you been on Gabapentin ?
rgds
Glider
Can anyone who has been on Gabapentin for several years please comment on their experience with it.
Thanks
Glider.
I have been taking it for nine months now.
Still fine, as long as I take it. I regret it if I don't, or try to go to two pills at night instead of three.
Some days, I need to take a one hundred if I start getting facial pain, which is only one or two days
a week.
It’s in my compounded cream, which I put on my face along with other things. I felt a little dizzy the first few days. Also, the cream didn’t start working well for a few weeks. I also take a Tricyclic tablet my mouth. I gained a few pounds. Not sure exactly what caused this. Overall, my meds aren’t perfect, but VERY helpful…improvement!!!