How bad do side efffects have to get before you look for any other meds or type of treatment for PN? I am at 1800 mg a day, and the swelling in my lower legs and feet have them looking like tree stumps!

I also have another issue going on that most here would never have to deal with. After the removal of my complete colon, I had a reconstruction known as a j-pouch, where a reservoir was created out of my ileum and reattached to my sphincter. While a little occasional night-time incontinence is tolerable for most j-pouchers, when it becomes an every-night situation we usually look for reasons, because it is serious business when you operate sans-colon! Has anyone else experienced fecal incontinence as a side effect of Neurontin?

I am awaiting yet more lab and bloodwork, and will then have an idea if we can get closer to identifying the cause of my neuropathy. And my gastro, during my visit Friday, ordered a celiac or gluten-intolerance panel, even though he feels that my symptoms do not indicate it. And he even agreed that I would be caught between a rock and a harder, less forgiving rock, if it is positive . . . since the diet most j-pouchers survive on is almost the exact opposite of that adhered to by CD patients!

I wouldn't be able to hand that!

Yes, this is listed on the official insert:
from http://www.rxlist.com/cgi/generic/gabapent_ad.htm

And yes edema is very common. Many quit Neurontin because of it.

The way that Neurontin works is by blocking "signals" in the spinal cord, before they reach the brain (hopefully just the pain signals)
But I suspect this drug is non-specific to some extent like most drugs are.

Here is the Mayo report on fecal incontinence--
http://www.mayoclinic.com/health/fec...477/DSECTION=3

With your special circumstances you may just be more likely to have this effect than others.
I personally don't recall any posters with this side effect.
But just about everyone gets some form of edema.

Here is the 'full prescribing information sheet' for the stuff:
Read it and have fun with all the different 'words' used to describe simple side effects. All of them either specific or deliberately obtuse - IMHO.
To be honest I would call your neuro and gastro and discuss this issue..but maybe after calling the 800 # for Neuronitin?
The drug company might have reports relevant to your situation, if not? They your situation is 'reported'.
I did experience the 'tree stump effect' when first on neurontin [when I'd first gotten severe PN]. But at the same time I had a hypothyroid flare-up issue going on so the two problems were considered separate-when maybe the swelling was the Neurontin, and not thyroid? I really HATE those tree stumps! And NOT ONE SHOE WILL FIT! And then you feel as if you are walking on bunches of bubble wrap? As if your balance wasn't wonky enough.
Just keep in mind? Yes there are other meds....some might work for you, or not. But, consider the side effects of any med with the other meds you take and have almost memorized those other meds s/e's that you are on... Specialist docs know only about the specialist meds they deal with daily...not usually about the other specialist meds you may be on. I've been making my own docs do lots of homework about all the meds I'm on and they are beginning to realize that there could be some 'problems' with the cross overs. Mainly because there aren't many people on my set of meds for my set of issues.
You can approach it with a 'what have I got to lose?' attitude, and just be alert for any bad or good things. NOTHING happening is often a good thing? Then remember that a lot of the neuro meds we take for our pain take 2-3 weeks to kick in... So if a BAD thing happens you should know in 1-4 days [my experiences] and good things take LONGER! Sigh.
Wishing you good or at least better things and soon! - j

Thanks for the feedback, both of you. I made my gastro aware at my visit on Friday, and he was the one who described my situation as between a rock and a harder rock!

I guess for now I will wear support hose and keep moving. Sitting seems to make the neuropathy worse . . . and well, for that matter, so does standing.

Maybe the latest bloodwork and labs will help define what is going on. . . so far no thyroid issues, no diabetes, no nothin'!

And my insurance company just sent through more disability verification paperwork for my doctors to fill out . . . I'd like to tell them to walk a block in my shoes!

Sitting seems to make the neuropathy worse . . . and well, for that matter, so does standing.


therein lies the rub. you have a lot of company in this aspect of PN.

Joe, you are soo right...durned if'n ya do? and if'n ya don't ....
Same with meds and their side effects and all of that!
Trick is to find the combo of things [including some exercise] that can do the most good w/the least pain and damages... Truly a trail-and-error thing!
We are the guinea pigs!
's and hopefully some compromises soon that work! - j

Does everybody find that sometimes it is a full-time job, this trial and error business? Sometimes even with mandatory overtime!!!

I have found that the best position it to have your feet slightly elevated. I sleep with several pillows under my legs forcing the feet upward. Also the feet should be "out in space" touching nothing not even the sheets. I know this is an almost impossible situation to achieve 100% but any help in this area should help.. ( By the way I see some people with PN I still smoking, yelp... smoking is absolutely a "no no".) The reason for this is not too difficult to undertsand. Smoking causes local anoxia(lack of oxgen) to the tissues including the nerves. And as we know any insult to the nerves is detrimental,

for going on 7 years now lefthanded. the alternative is unacceptable to me, so on i go.

That certainly is a bit of common sense when it comes to lower extremity swelling. However, I have positional issues, in that raising my feet (while seated) shifts my body into a position where my, uh-hum, "bum" is triggered to relax, causing leaking. Most people with PN do not have issues with incontinence, but when you are lacking your entire colon and beyond, and in its place is a j-pouch which, as wondrous as it is in keeping me from having to wear an ostomy bag, is very sensitive to position and other stimulii . . . often with dire consequences. I do everything in my power not to upset the pouch, as you can imagine!

I also have always had trouble elevating my feet above my head, as in reclining. I get nauseous and ill-feeling.

We do, however, keep the covers on our bed very loose at the feet. For a while I could only sleep with socks on, to reduce the sensation of things touching my feet, but now even that is too much stimulation. It is really too bad when the bed, that cozy, warm arena of snuggling, comfort and naps, becomes a challenge! But for that matter, eating for me has become an eternal challenge (as I am sure all celiacs can also identify with) and walking . . . and forget horseback riding, hiking long distances, kayaking (yeah, right -- if it isn't cramps, numbness or circulation cut off, it is the need to paddle to a nice restroom!), and let's just say I am glad I tested myself for a few years as a mountaineer before any of my health issues showed up!!!