I take 1200 mg 2x a day and 1600 at night and I take 2mg valium twice a day. Not to mention Zanaflex, Baclofen, Noritylan, Tramodal on top of it.
I wish I could lower my medications I asked the doctor and he said maybe at a later date but I had to switch doctors for insurance purposes and he don't know me that much. Side effects vary, weight gain is really bad with Neurontin I know this for a fact, so it varies per person I guess but I would always check with your doctor if you was still having nerve pain. Hth and hugs.:hug:

I talked to my Neuro yesterday and he told me if it helped do it.. He did tell me he wants to wean me off the Valium which I am not to happy about it is a very relaxing drug for me he is switching me to amatipaline (spell) which as long as it works thats fine by me. I can understand how people do get addicted to valium though it is a all over good feeling. And the weight gain I know to well about I was on it about a year ago much smaller dose and put on 15 pounds Im allread overweight so what the heck probably wont even notice :D

Hi aprilfools,
I am one who has been on 3600 mg of Neurontin when I was in relapse and everything would worsen on me, so I needed the extra boost. I weaned back down to 2400 mg or even 1800 mg when the relapse was over, in a few months.

I had been on it since 2001, starting dose with 100 mg at night. I was told to increase it if I felt it was helping with sensory symptoms, it did. The draw back was feeling dopey in the day, so I took it at night in the beginning.

I knew when my body wanted it, it is addictive too, IMO. When it didn't seem like it was helping anymore I increased it, with doctors orders, to get control of all the weird sensory feelings (things I felt and the doctor could not see.)

Numbness, MS hug, buzzing, wet pant leg feeling, shocks, and more. I had to increase it to get the sensory feelings to go away. The years past and the amount was high, and it just stopped working. He tried to switch me to Lyrica, but I felt worse on it, I don't know why, because it helps many people, but not me though.

So after the 6 years on it, I gave up and weaned myslef downward and off. It took almost a year to do that. My body was craving it, really. So slow was the way I had to do it. I was not on Valium, never tried it ever.

I just looked at all the drugs I have taken over the years and decided, this is crazy. Why so many? Are they helping or causing more problems that need more medication to remedy?

So I went off everything. At least I am not doped up in the day any more or have a drughangover in the morning. Not waking up feeling refreshed because I pop more pills when I wake and I got dopey or brain fogg, and cognitive issues, more than I needed to add to my slight cognitive issues I already have. :rolleyes:

Any changes you make in medication, you should consult your doctor first. You might be given them for other purposes than I took them for.
Maybe this helps you or others, I don't know. It is just my thoughts on this.

BTW, I never gained an once on Neurontin, we are all different.

I gained weight when I worked, with the stress I popped junk food all day. Then I lost it over the years by not buying junk food. Chocolate isn't junk is it? :D My one love. Dark chocolate. But in moderation.

lady so are you on no meds now..?? for any nerve pain or reg pain.??? curious... I am on neurontin for nerve pain.. and baclofen for stiff spasticity pain.... now getting more stiffness pain... not sure I want to up baclofen.. as I know if call they will say go for it... not a med taking person so hmm hugss,sarah

Oh wow you described everything that had been going on with me for the past few months with a burning head to boot.. The Neurontin does help alot and uping the does did the trick and my Neuro was totally fine with it.

Thanks everyone for your replies everyone is so nice on this site
Lisa

Lisa, I am glad it works for you. I hope it keeps working for you.:)

Sarah, I am only on 3.0 mg LDN and 1 Klonopin .5 mg every 12 hours. I am working on reducing the Klonopin, but it is hard. I have been on it since 1981 4 x a day. I got it to two a day so far. I take things very slow. Withdrawals are tough.

The LDN helps a lot with pain. The Klonopin was for tremors.

April - you really should consult the doc before going up in dose with any med. If for no other reason than you may run out before your script is up, and he won't understand why.

If you cannot get in to see him at least call.

Lady - I was in the same boat. I was on 9-10 meds and started getting worse. Had a big flare of insomnia on top of everything, could not sleep more than a couple hours for months.

Got off everything I took daily but topamax (and kept my migraine rescue for as needed use).

I only take two meds daily, still. Guess if the meds actually worked and did not create worse side effects than the original problem, they'd be worth taking - until then, this is how I do it.

What is LDN I keep seeing discusions about it but no clue as to what it really is I am offically done with all interferons I cant handle the 2 days of being sicker than a dog and the copaxone never worked for me. What other options are there for us??

Lisa, LDN is short for Low Dose Naltrexone. We have a thread way up top, on the main page, that says LDN Infromation and check-in part 2. We discuss the drug and how we are doing on it. There are other drugs discussed up there also.

LDN had been helping many of us and it cost very little a month. It is a pill you take a bedtime. That's it. You need to get a Neuro or a PCP doctor to prescribe it for you, and then get it from a compounding pharmacy, like maybe Skip's by mail in Florida.

Here is the website to what LDN is all about. Many on here have taken it for 4 to 6 years. I am new to it, almost 8 months now. It has helped me greatly.

http://www.lowdosenaltrexone.org/

I think everyone has a different story with their medications, but my doctor indicated to me that over 300mg of Neurontin daily has very diminishing returns for nerve pain.

Granted, it didn't really help me even at higher amounts, and I no longer take it (tapering off it sucked).