3600mg neurontin daily? Really?

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Well I don't know about 3600mg neurontin daily. But when I was taking it several years ago my dosage was kinda high. I was taking 900MG, 3 x a day, 2700mg total. So it doesn't seem to odd to me. Hopefully it helps you. :)
 
While 3600mg does seem high, I can tell you that neurontin is a med that is typically prescribed at higher doses. I was given it as an adjunct therapy with Dilantin as my main drug years ago, and I took 900mgs a day of neurontin for that. If neurontin is going to be the primary drug then I would imagine it would have to be a higher dose.

It surprises me that neurontin was the drug chosen, because I was told that it wasn't always that effective. Also, and this is just my opinion, but 600mg of pheytoin seems a little on the high side. If for some reason you aren't able to achieve therapeutic levels at that dosage, then maybe the doc needs to consider another med, if there is one available.

I took neurontin along with Dilantin for the better part of 10 years, and I didn't notice any appreciable side effects. However, once I ended dilantin, I kept on taking neurontin alone, and it was then that I did notice effects. (although my doc didn't necessarily think these effects were do to neurontin at first). My effects were just feeling unstable, and swimmy headed (especially in the morning). This feeling would sometimes pass, but it was pretty much a daily occurrence. After having a seizure, I was moved to keppra, and taken off of neurontin completely. The swimmyness in the mornings then went away, so I do think it had something to do with the neurontin.

Hope that helps in some way.
 
Dignan, you're right on track. First off, my phenytoin levels came back yesterday and they're toxic, so we're cutting down.

Also, Neurontin, and even phenytoin, are probably the worst choices out there, but I have no other options for anti-convulsants. This is a last ditch attempt to make meds work. I've been through all the others and for whatever reason, I always have the rare, worst possible reactions. My doctor says I'm weird.
 
For what it's worth, I had a boss with epilepsy who was on Neurontin. He claimed that he was entirely controlled and had no side effects whatsoever. I don't know how much he was taking. He seemed perfectly alert, no memory problems, sleepiness, etc. I don't expect most people would have that result, but it worked for him.
 
kirsten said:
Dignan, you're right on track. First off, my phenytoin levels came back yesterday and they're toxic, so we're cutting down.

Also, Neurontin, and even phenytoin, are probably the worst choices out there, but I have no other options for anti-convulsants. This is a last ditch attempt to make meds work. I've been through all the others and for whatever reason, I always have the rare, worst possible reactions. My doctor says I'm weird.
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I will say this, and I know each person is different, so your mileage will vary, but I had no complaints about how I felt physically, mentally, or with seizure control while on my phenytoin neurontin combo. It was the long term effects of phenytoin, specifically bone loss, that led to the change. Wish I had never made that change now. So, at least from my experience, those drugs can work.

Also, as long as you aren't having seizures (which of course is a big if) I don't get too fixated on levels like docs do (unless they are high levels). You don't want high levels on phenytoin. But, if you on a lower dose, and the doc is worried because the level looks low, but you feel good and seizures are at bay or manageable, then screw the numbers. The normal range is often arbitrary.
 
Thanks, Dignan. It's good to hear that you were on the combo and it worked for you. I'm usually very suspicious when doctors tell me my levels aren't high enough, and when they've increased, the results have almost always been bad. With phenytoin, I felt out of my league because it seems to be a weird drug, so I didn't really know whether therapeutic range was necessary. Before, I had phenytoin levels of 3 and I was having seizures, of course, but now if seizures stop once the level stops being toxic, I'll keep the doctors under wraps.
 
I talked to an endocrinologist once about how the normal reference range for phenytoin was created, and he said it was ridiculous and just made up by docs a long time ago based on their limited experiences with their few patients and it stuck for years.

He said the main thing is not to be toxic, which is why levels have to be monitored (and to ensure your liver is taking it okay). Other than that, he said never to worry about it being too low. He said if it is helping with seizure control then being "low" dosesn't matter. You want to take as little as possible while maintaining seizure control, and unfortunately some docs don't care about keeping you on as little drugs as possible.

Also, and you may already know this, but there are two tests for phenytoin levels. There is the general test (which most people see) and there is a free phenytoin level test which shows the amount free and unbound in your system. Neither of these levels should ever be toxic. That said, the overall level could read "low" while the Free level could be fine.

Neurontin on the other hand, is not processed in the liver, and as such, doesn't require liver monitoring blood checks. Its also one of the reasons, among several, that higher dosages can be used with that drug.
 
I am completely stunned by this, and more than a little annoyed. I had no idea there was a free level test and my doctor has never given me one. Okay, admittedly I didn't have seizure control at all, but there was a stage just before my last increase when things were definitely getting better and I ASKED my doctor if it was possible that the level was reading low when the level actually wasn't and she said no. That was it. Just 'no.' I really think this last month could have been avoided. I WISH these doctors were put through a month of our medication, and even a month at toxic levels, in med school so they actually had a clue how life affecting it is. I mean, the fall out has been huge. I'm even having to go to the dentist this morning as a result of the toxicity.

THANK you! I will now request a free level along with the general one. And I will keep the doctors in check.
 
When I was on phenytoin, my neuro was unhappy with how low my blood level was (3.4), despite the fact that I was seizure-free. It took a lot of work to get her to understand that my therapeutic range might be lower than someone else's.

I had to go through the same process with the same neuro when I switched to Lamictal -- she wanted me ramped up to 300mg/day, and I stopped at 250mg day. She insisted I would have a seizure at my "low" dose. Six years later, I'm still seizure-free, and my dose is lower still -- 175mg/day. And I see a different neuro.
 
Before this stupid phenytoin debacle, I always did well on low dosages of my anti-convulsants. There have been quite a few times when my doctor has increased my dosage purely to hit therapeutic level and that, as a result, caused the kind of side effects that made taking that medication impossible. I was just reading an article about how doctors need to make room for patients who prefer not to be treated when illnesses are low risk, and those who prefer low dosages with the minor set backs of being slightly undermedicated. It's an interesting viewpoint, and one that I've never considered as an option. I can get control of my TCs relatively easily but the other seizures are less responsive to medication. Some of those seizures are easier to deal with than side effects. I'd be more than happy to be on less medication, with fewer constant side effects and only the occasional seizure, than have complete control and every side effect in the book every day.
 
I'd be more than happy to be on less medication, with fewer constant side effects and only the occasional seizure, than have complete control and every side effect in the book every day.
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This.
 
Kirsten have a talk with your doctor about what works for you.

Do you what meds you were on that you had fewer seizures? If so, that is what you should be on.

A top neurologist put me on 1800 mg of Neurontin a day. That is with 4 other seizure medications. The doctors were having problems stopping my status seizures. I almost died 3 times. That is why I have to be on a large combo. Still, I am having some serious seizures. They are mainly atonic and absense seizures now.

I have another good neurologist now. She isn't changing my meds.

When something worked, like Nakamova quoted from you, stay on it. A doctor should not change it.

Are you keeping a diary? It is a good idea. That helps your doctor, too.
 
I take 300mg of Neurotin three times daily for nerve pain and it works great except there has been a noticeable weight gain. My son has temporal lobe epilepsy and no medication has ever helped him. I used to fee so sorry for him especially when he was on Tegetrol land Fubatol. Tegetrol sent him to the ER screaming with head pain and Fubatol made him so sick to his stomach. Thanks to God, he entered a clinical study for the Neuropace neurostimualator and so far, has not had a seizure for 11 years. However, the FDA just approved it and now his insurance will have to pay for it with him paying co-pays. I pray he never loses his job. It woud be so cruel to have it turned off because he could not afford a transmitter change or a battery change. Just a battery change is $20,000.
 
Janie said:
he entered a clinical study for the Neuropace neurostimualator and so far, has not had a seizure for 11 years.
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Thank you Janie, I have never heard of the Neuropace neurostimulator so I looked it up.

One of the many links is http://www.neuropace.com

I hope he gets to keep it, too. I am going to talk to my neurologist about it.

I take 1800 mg of Neurontin a day but I do not have problems with weight gain. Is he excersing? Even short walks will help him lose weight.
 
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David has a demanding physical job and that keeps him in shape. We noticed something wrong when he was 17 and it turned out to be temporal lobe seizures. He was 27 when he received the transmitter. Those years in between were terribly hard on him because no medication ever helped him. He is on 2 meds now but I don't know what they are. David is a very private person and rarely talks about this. He has been happily married for 11 years so far and she is a gem. I pray for my son and al those with illness problems every day. His job requires him to drive long distances and I pray he is able to find one that doesn't require him to drive so much.
I hope your neurologist thinks the RNS is a possibility for you!
 
I started a new thread about it: Neuropace RNS system. I hope someone will reply to it. Janie will you please put your experience on my thread. I do not think most people know about it. I did not know about it until you told me.
 
The overall effect of coadministration of a therapeutic dose of valproic acid is that the total concentration of phenytoin decreases due to increased clearance but the free fraction increases; the free concentration of phenytoin, which is the active form, remains virtually the same. Thus, no dosage adjustment is needed when valproic acid is added to maintain the same pharmacologic effect, but the total concentration of phenytoin decreases.
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This is why I went toxic. They kept increasing the phenytoin because my levels were low with valproic acid, and then they stopped the valproic acid and increased the phenytoin by 200mg at the same time. Thanks, doc.
 
Yikes! I will first say I love Dilantin :) as it controls my t/c seizures but I have learned enough about how it works to understand it can increase (or decrease) in a non-linear fashion Phenytoin: A Guide to Therapeutic Drug Monitoring. So a minor change in dosage can cause levels to become toxic. Or if you add a drug that increases the amount of Phenytoin in your system. When I needed Zoloft for anxiety, my GP sent me to a psychiatrist who he felt would understand the interaction of the drugs I was taking. So the shrink says I can take up to 200mg no problem. Luckily I increased it slowly, 25 mg at a time (the shrink thought I was being silly). Then at 75mg I started the whole loss of balance, unable to think, feeling generally sick thing. It was only then that I found out (through my own research) how Zoloft affects Dilantin. Light bulb went off as I realized I was overdosing. Got a blood level check and my GP & I discussed the best thing to do (we cut back on the Zoloft & monitored the Dilantin).

I have this feeling that there are too many things that may or may not happen for a doctor to discuss all of them. However a good doctor (my GP is wonderful!) will know what to watch and check for and decide to discuss. I'm sure I could discuss more affects with my doc but I don't need more to worry about especially if, after 4 decades, they aren't happening to me.

About the shrink & the Zoloft - I got toxic on the Dilantin a few years ago and decided to drop the Zoloft cold turkey as I really didn't need it for anxiety but only taking it because I knew the interaction. The plus side was I got rid of the annoying & condescending shrink. My GP freaked when I finally got to see him the following week (why does this always happen over a holiday?!) but understood my reasoning.

Interesting about the free phenytoin test. Since my serum blood levels do seem to be a good indicator of the Dilantin in my system I can use them as a general test but it is interesting to know that you can actually monitor it in more detail.
 
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