3600mg neurontin daily? Really?

[kirsten]

I'm very relieved that my neurontin has finally been approved by my med insurer.:banana: But I see my neuro is putting me on 3600mg daily. Woah! Isn't that excessive? Anyone taking that dose, and if so, are you zombified?

p.s: I looked for an appropriate smiley for 'zombified' but couldn't find one. We are an epilepsy forum. I think we need one of those.

 

[marika853]

Wow! That does seem excessive but I'm not a dr. What and how much were you taking before? Hope it works out.
M

 

[kirsten]

I've been taking 300mg of phenytoin daily and 600mg of epilim--all pointless because I've been having seizures all the time. The neuro will be keeping me on the 600mg epilim as well.

 

[MAB]

I no longer need pain management, but when I did, the doctor tried to put me on that amount. I was suppose to build up gradually. The stuff made me a crazy zoombie, if that is possible. I finally refused to take it and he was pissed. I went to my neurosurgeon and had him write a letter to pain management that I was not to take the stuff. I was having partial seizures during this time but was still undiagonesed. First thing I told my neurologist when I found out I was having seizures is I was willing to try anything but neurotin and Topamax. Absolutely hated what that stuff did to me My sister is on neurotin for nerve pain and loves it.

 

[kirsten]

I've been on a low dose when I was taking it as a supplementary med together with something else and it certainly didn't bother me, but I was on a tenth of what my neuro's prescribed.

 

[MAB]

Even the small dose that they started me at was horrible. I never could build up any higher. I almost had to stop driving. I would stop at green lights and drive thru red lights and stop signs. I would say anything that would pop into my mind. Nearly got me fired. Thank God, I have known my boss for a long time and we had always going along because I would tell him off. He told me I was an inch of being fired and that was after more than 30 years on the job. As soon as I stopped taking it I returned to normal, at least my normal.

 

[Belinda5000]

Neurontin I was on that years ago and it depressed me really bad and put 40 pounds on me.

 

[Nakamova]

In a small number of folks, the 3600mg dose has proved effective:

Patients > 12 years of age: The effective dose of Neurontin is 900 to 1800 mg/day and given in divided doses (three times a day) using 300 or 400 mg capsules, or 600 or 800 mg tablets. The starting dose is 300 mg three times a day. If necessary, the dose may be increased using 300 or 400 mg capsules, or 600 or 800 mg tablets three times a day up to 1800 mg/day. Dosages up to 2400 mg/day have been well tolerated in long-term clinical studies. Doses of 3600 mg/day have also been administered to a small number of patients for a relatively short duration, and have been well tolerated. The maximum time between doses in the TID schedule should not exceed 12 hours.

However, it does seem potentially excessive as an adjunct med. Kirsten, I hope your ramp-up schedule is slow, and that you are given time at each increment to evaluate efficacy and side effects. No point in going that high if it doesn't help your seizures and/or gives you horrible quality of life.

 

[kirsten]

Thanks for this, Nakamova. It's actually not being used as an adjunct--I think that may be why the dosage is so high. I do know that this neuro (who I have only seen three times yet) has at least gotten a really good EEG reading with me because I was lucky enough to have a seizure even though we hadn't intended it. So I'm thinking perhaps I can give him some confidence for that reason? I mean, at least he knows what's going on in there. I'm feeling really impatient to ramp up quickly after months of no control, but I also don't want to take more than I need to, so I'll let him do what he thinks is best. i think my expectations are way too high with this med because it has to last me the full year.

Belinda, I also know someone who feels she put on a lot of weight with Neurontin. I've found that I tend to put on weight with a med that irritates my stomach, because it becomes painful when you haven't eaten for a while. I hope Neurontin is gentle that way.

 

[Nakamova]

Oops, I was thinking you would be staying on the Epilim. Is the hope to taper off of that once you get to a working dose of the Neurontin?

 

[kirsten]

It seems I will be taking a low dose of Epilim. I'm not sure if it's moving down to 300 or staying at 600mgs. My levels are too low, and the dosage can't be taken up to a therapeutic level, so the Neurontin has to do the main job.

 

[CQ:)]

I was on Neurontin from Nov 2009 - Nov 2010, I hated it as it didn't help with the seizures & I hated the side effects I got from it. It made me really tired, affected my moods (I could cry or scream at a person at the drop of a pin) & I am sure it affected my memory.

My neuro started me out on 400mg twice a day (morning & night), on top of that I was also on Tegretol 400mg twice a day & Keppra 1500mg twice a day. I went to see my neurologist in July 2010 to get some paperwork signed, when he asked me how I was going on the Neurontin I told him how it affected me & wasn't helping with my partials. My Mum even told him how it affected me in particular my mood, instead of taking me of the neurontin he increased it by adding 400mg in the day time (i took it at lunch) which made me even more tired & moody.

At the same time I was going through the process to see if I could have brain surgery, I had to go to the hospital in the city in November 2010 for a Video EEG. I told the epiologists there how the Neurontin affected me so the 1st thing they did was take me of the Neurontin & never put me back on it. My Mum said she noticed a big difference after I was taken of the Neurontin.

 

[kirsten]

So the doctor has started me directly on 1200 mg yesterday, which seems crazy to me. Anyhoo, I had to walk just across the road to buy some milk. As soon as I got out the gates I had to check that I was properly dressed; I was worried that I was still in my Pjs even though I'd already bathed and even done a spring clean. I didn't know what was going on with the cars on the road or how to cross. Did my best but felt really unsafe. Came out the store, fell over the pavement into the road, and struggled to get across again. I almost cried I was so frustrated. But after my first dose of 400mg yesterday, suddenly my thinking cleared up amazingly. I know neurontin takes a long time to work but I've been wasting time playing candy crush since I've been taking time off work and the higher levels get really complicated. I'd been getting stuck all over the place before but two hours after I took that dose I was killing it level after level after level. I think its the placebo effect--I'm highly suggestible. But now I'm thinking I might have to take up friends' offers to help me out with the basic stuff because I feel pretty unsafe going out by myself.

 

[MAB]

Be careful Kirsten. Even though I didn't give up driving when I was on the stuff I probably should have. It is a wonder no one was seriously injured or killed while I was driving.

 

[kirsten]

Mab, I've never been allowed to drive--never been seizure free long enough. But, yes, I've cancelled my doc apt tomorrow and I'll try to stay at home for a while.

 

[MAB]

I really don't know why the doctor didn't suggust I stop driving. I was on sustained release morphine, roxicodone, ativan, neurotin, muscle relaxers and who knows what else. I was able to get off all the drugs after back surgery. I had a stroke during this time and immeditely develpoed seizires within 24 hours. I had so much going on that's probably part of the reason the seizures were missed for so long.

 

[kirsten]

Yes, you have to wonder why doctors don't keep us more informed. If I list all that I haven't been told, it would really look crazy. I haven't been told that oral contraceptives don't work with my anticonvulsants or that I shouldn't fall pregnant on them--that combination of ignorance can have some pretty horrible consequences.

 

[Emee]

I was on Neurontin for several years. I was started at 100mg at night & gradually increased the dose over a several weeks to 3600 mg daily & more if I felt I needed it. At one time I was on much more than 3600 mg. Dosage was increased so gradually I didn't have a lot of problems with it. I did want to sleep a lot at first but I would not give into it. I can't imagine starting with 3600 mg.

 

[Joonbug]

How did this end up turning out? I just joined the forum to get some insight on other people's experiences. I grew up with Benign rolandic epilepsy and only ever took neurontin. They always had me on insanely high doses. I experienced some major depression and forgetfulness, but it definitely worked. What has been your experience?

 

[kirsten]

Joonbug, it's not been an easy ride, so we've been reshuffling things all over the place. Currently I'm on 2000 mg Neurontin, and 600 Phenytoin--I've stopped the rest. And still no seizure control. I did have a lot of months of kindling to take care of, and I wasn't achieving therapeutic levels of phenytoin or epilim, so it's all just been a disaster. What I can say, though, is that I certainly got over the Neurontin side effects. I have had absolutely no problem in that sense. Phenytoin, on the other hand, is an entirely different matter. Depression...no. I did have a serious patch of it earlier but it seemed to follow the pattern that's more typical of my TLE. Forgetfulness will of course be an issue for me because of the uncontrolled epilepsy, so I have no idea what to attribute to the Neurontin in that regard.