Pain Control

[Guest guest]

Jan,

Already on it, sent an email to NBC's today show and my local NBC affiliate telling them it's time to give chronic pain victims equal time, to show we are not drug seekers, or that it is not "in our heads" (except of course for the headaches we all get)

Hugs,

Jo

[Guest guest]

In regards to the pain control problem and what this government is doing to Chronic Pain Patients is taking advantage of our weakness. They think they have the upper hand on this. That is why anyone who is in chronic pain knows we must send in e mails to NBC to protest and get some airtime for groups that support pain patient rights. We have to find someone that will get NBC's attention to let us speak. Hey Jo, I know you will do this ?. Right. ?.

Hugs

Jan

[Guest guest]

JB,

I will definitely keep you in my prayers, not only for the lawyer but just help you deal with the pain, and that you can get your meds soon. Are you working right now or can you not work? Just keep hanging in there and taking one day at a time is the best approach. That's really all any of us can do, even on meds. I did want to mention one thing for when you are able to go back on your meds, my neurologist (he's also in pain management and psychiatry) told me as did my primary care doctor that the max for Neurontin is 3200 mg a day. I'm at 2700 so I can't really go too much higher myself, but 1200mg 4 times a day puts you at 4800 mg, which unless my doctors are wrong, is dangerously high. Just something to think about. Also I was told since I'm at 2700 mg, if it's not helping at this high dosage going to 3200 really isn't going to make that much of a difference, so if 2700 doesn't help me will probably switch to a different medication. Please be sure to check on that before you start taking the Neurontin, and please make sure they increase you slowly as you have been off of them for so long. Anyway, I hope that you are having a nice weekend despite all of this, and as always you are in my thoughts and prayers.

<hugs> Lori

[Guest guest]

JB,

Well, who knows then, I swear I wish these doctors could agree on things. I don't feel it is doing anything for me either, at this point I would rather try something else then just keep increasing the Neurontin. I'm glad you had already checked though, I got worried when I heard that dosage compared to what my doctor told me.

<hugs> Lori

[Guest guest]

Barbara,

Maybe it is 3600, that would make sense actually, seems to be by 9's...I knew it was around there, just didn't know you could go as high as 4800.

Lori

[Guest guest]

I'm on a total of 3600 mg of Neurontin each day (1200 three times daily). The docs in my group have told me that's the max. Who knows?!?!? BarbaraJ B wrote:

Lori,

I asked the pharmacy and they said there are people taking much higher then me he said nerontin ( how ever ya spell it) is a very safe drug.... I also asked the dr at duke he said the same thing..

But things ive read here say different. So who can be sure lol. Its all so confusing. I wont be put back on nerontin i dont feel it did anything for me at all. Thank you for your prayers and thoughts. much love JBAlwayzLoRi@... wrote:

JB,

I will definitely keep you in my prayers, not only for the lawyer but just help you deal with the pain, and that you can get your meds soon. Are you working right now or can you not work? Just keep hanging in there and taking one day at a time is the best approach. That's really all any of us can do, even on meds. I did want to mention one thing for when you are able to go back on your meds, my neurologist (he's also in pain management and psychiatry) told me as did my primary care doctor that the max for Neurontin is 3200 mg a day. I'm at 2700 so I can't really go too much higher myself, but 1200mg 4 times a day puts you at 4800 mg, which unless my doctors are wrong, is dangerously high. Just something to think about. Also I was told since I'm at 2700 mg, if it's not helping at this high dosage going to 3200 really isn't going to make that much of a difference, so if 2700 doesn't help me will probably switch to a

different medication. Please be sure to check on that before you start taking the Neurontin, and please make sure they increase you slowly as you have been off of them for so long. Anyway, I hope that you are having a nice weekend despite all of this, and as always you are in my thoughts and prayers.

<hugs> Lori

[Guest guest]

Hi all!

Neurontin is tolerated well in pretty high doses by most patients.

There are patients taking One or Two GRAMS of the stuff per day in

safety. There are dissenting opinions for EVERYTHING in this world,

including medication. Remember, doctors not only develop opinions

about medication based on efficacy and safety, but also on politics

and the almighty dollar. Get lots of opinions, but most of all, be

involved in your own treatment to the point that you're honestly

observing what's happening to you as you go through your treatment.

I replied to this topic because, I'm weaning off of Neurontin.

After being on 2700mg/day for about a year, I requested to

discontinue the medication because of memory loss. It's starting to

affect my work and other aspects of my life. The stuff did indeed

control the zapping and burning of my RSD leg and foot. I've been

having a series of blocks and I'm prepping for SCS. I really hope

all goes well in that arena!!! Bottom line...if it's working and

it's safe, consider it!!! If it isn't and you're uneasy about it,

then refuse it. It's your body and your life. You have control and

you make the decisions! Peace and Love!!!

Cliff

> I'm on a total of 3600 mg of Neurontin each day (1200 three times

daily). The docs in my group have told me that's the max. Who

knows?!?!? Barbara

[Guest guest]

I was on Neurontin in 2001. I was upped to 2700mg/day within 1 1/2 months. Then, I almost died when being taken off of it......suffering from seizures, nausea, shakes, unable to eat or drink......

I would NEVER recommend it for any reasons unless you actually ARE suffering from Epileptic Seizures and nothing else.

This is one Drug that is very, very dangerous, more than any others. Even doctors don't know much.

I have a friend in another group....a friend of hers was starting to wean off with her doctor watching her closely. 2 hours after she took 300mg less....she was fighting for her life in the ICU, in a coma. Her 2 KIDS found her on the floor in their house when they had gotten home from school.

I lost 2 weeks of my life because of being forced to quit it cold turkey. I don't remember a single thing....Including my Daughter's 2nd birthday.

Tonia

----- Original Message -----> Hi all!>> Neurontin is tolerated well in pretty high doses by most patients.> There are patients taking One or Two GRAMS of the stuff per day in> safety. There are dissenting opinions for EVERYTHING in this world,> including medication. Remember, doctors not only develop opinions> about medication based on efficacy and safety, but also on politics> and the almighty dollar. Get lots of opinions, but most of all, be> involved in your own treatment to the point that you're honestly> observing what's happening to you as you go through your treatment.> I replied to this topic because, I'm weaning off of Neurontin.> After being on 2700mg/day for about a year, I requested to> discontinue the medication because of memory loss. It's starting to> affect my work and other aspects of my life. The stuff did indeed> control the zapping and burning of my RSD leg and foot. I've been> having a series of blocks and I'm prepping for SCS. I really hope> all goes well in that arena!!! Bottom line...if it's working and> it's safe, consider it!!! If it isn't and you're uneasy about it,> then refuse it. It's your body and your life. You have control and> you make the decisions! Peace and Love!!!> Cliff>>> > > I'm on a total of 3600 mg of Neurontin each day (1200 three times> daily). The docs in my group have told me that's the max. Who> knows?!?!? Barbara

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