NEURONTIN(gabapentin) USE

[opus88]

I've been on 1800 mg neurontin for 4-5yrs now...but its no longer working as it once did..and I have been using 2100mg (on my own) for a few weeks now but think I need even higher dose...so will mention to my doctor when I get rx refilled. My question is:
Is there anyone that has been on this med for a long time and at a high dose?
And what are the side effects of long term high doses? (other than the generically silly ones they give on some sites)...I want PERSONAL experiences..
thx

[Glenislay]

After years of achy type neuro pain in chest and shoulder, 300 mg of gaba took it away.  Then after a while, I started getting unbelievable pain attacks. I can only describe the attacks as if a steak knife was stabbed in my upper side, then the knife is pulled down towards my groin and sometimes then down my leg.  Thankfully, each attack only lasts a second.  Most days, I would only get 2-5 attacks, but had some days of 20-100 attacks.  I was constantly having swollen, pulled stomach muscles from reacting to the pain.  There was no more driving and no more going out in public because of embarrassing yelling during attacks.  It took getting up to 3600mg/d of gabapentin to eliminate them.  At 2400, it just wasn't enough, but made the attacks a little less severe.   I have tried to reduce from 3600 from time to time with doc's approval, but attacks return.  

I am not sure if I understood my doc, but he said I might try a small additional dosage of Lyrica along with gaba if the 3600 ever doesn't do the job.  I have only used gaba for a couple years, so can't really say if I am getting a resistance to it.  I am always wondering if I can cut back in my situation.  

Here's my unique side effects- swollen feet, slight weight gain, concentration problems whenever a dosage change, plus:

I think my vision changed slightly as the dosage of gabapentin was changed, so I had to update glasses a few times. Catching the vision change thing for me reduced the ongoing feeling of dizziness because it was just the need for different glasses.  There's room for it to be a coincidental age thing, but eye exams showed changes matched dosage changes. Noticed certain fluorescent lights take time to adjust to, but can't say if it is connected to gaba.  

Even though it says on the insert to stay away from grapefruit and maybe other citrus while on gaba, I also discovered that drinking Squirt and some other popular clear sodas with citrus will greatly interact with gaba and cause dizziness and other negatives like feeling of being slightly drunk.  

I don't know if this will make sense for gardenia76, because everyone is different, but with my leg problems, I have found if I have elevated my legs very long and then try to go to sleep, I have nasty feelings in my legs.  If I sit/stand/walk for 30-60 minutes right before laying down to sleep, I can go to sleep before legs bug me.  In other words, if I lay down to read or watch tv (especially an easy chair where legs are higher than hips), then plan on sleeping, the legs act up more.  Just a thought that works for me.   I also notice I get cold feet during the day because of too small of socks with my swollen feet.  I also got rid of the occasional pulsating feelings in my lower legs by watching my shoe and sock size because of slightly swollen feet/ankles from gabapentin.  

[opus88]

CORRECTION!!
I didn't mean cymbalta I meant the drug LYRICA ( hope I have it spelled right)
have you tried this medication?

[opus88]

yes it is interesting that this medication looses it effectiveness. Its not a narcotic so there shouldn't be a tolerance level.
I don't have MS but the neuropathic nerve pain seems to be familiar to more than one disease. I am also on oxycontin, this is for my back pain and I find it does NOTHING for the pain down my legs!!
I have DDD and the pressure on the nerve roots in my spine are whats causing this nerve pain.
Its like theres a tornique (?) up around my thighs and the blood supply and nerve endings are all pinched off...My legs have a deep ache and tingle constantly, I take gabapetin every 5-6hrs otherwise the pain is so severe I can hardly walk....a pain that is so hard to describe..but like they are filled with cement and every nerve fiber is hardening.
don't know if this makes any sense? its so hard to describe ones own pain.
So for a 4 years 1200mg gaba seemed to work, than for last 6-8months I've needed 1800mg and now I've experiment with up to 2400mg breaking it up into doses every 6 hrs....lucky I've had extra on hand to do this. I have an apt. next week to get my doc to increase the prescription.

What do you get for side effects with the high dose you are taking?

Have your tried CYMBALTA? thats another medication that I've been told is good for nerve pain and I wonder if others find it more effective and what abt those side effects?

Have you read the book CLIMBING HIGHER by MONTEL WILLIAMS?
I have read it because I saw him on tv, he has MS and the leg pain he described was similiar to my own. He talkes abt all this BURNING in his legs as you describe. The book talks abt all the treatments and medications he has used and may be of some help to you!!

thanks for the response..lets keep in touch and see what we can do for help.

[gardenia76]

I have been taking about 3200 mg as I have MS, horrible burning in feet and lower legs. I remember years ago taking the dose your on, and with time obviously had to constantly up the dose. At present I still have burning, some days better than others. when I have my period it's worse! Just last week I slipped another pill before bed, the pain was soo bad! This seems to happen with this medication, you take a certain dose and then with time it doesn't seem to be working anymore and you have to take more. This does not happen with other medication that I take. I honestly can't figure it out, and I don't find it that effective but what else is there????? IT'S INTERESTING THAT THIS IS HAPPENING TO SOMEONE ELSE.