not personally, but if you go to DS fibromyalgia and search thread titles? neurontin is used a lot, comes up about every month or so, if not more. Some find it effective at 600 mg, others need 900, it does vary, but the main side effect noted in fibro group has ben sleepiness from what i recall.

Blessings and healing to you, qnd you ARE brave:-)
leo

My experience with neurontin is so vast that I had to google it. My research got as far as proving my ignorance to be utterly profound.

But I wanted to put on my cheerleader gear http://www.likethespice.com/Artist%20Bio%20Pages/Jason%20Bard%20Yarmosky/cheerleader_yarmosky_1.jpg and give you the OLD rah rah to help you through the upcoming trials.

GO MUJI!!! YOU CAN GET THROUGH THIS!!!

BTW, search discussions. We are not much on our subgroups over there, LOL....

I knwo it is also called gabapentin, but that is all I know.


Rah rah aisboombah GOOOOOOO MUJI!

I have been on it all summer. I am on a pretty good sized dose of 1800 mg a day. 3600 mg is as high as the VA will go. A lot of people on the chronic pain board seem to be in the 600 mg or less range.

It is fantastic for nerve pain! Crap for any other kind of pain. It takes the pain from the crushed part of my spine, but not the parts that are arthritic or the joint pain in my knees. For that I am still on opiates.

It has its pros and cons.

Pros:

It has STOPPED 99% of the pain from my crushed vertibrea - which had me down to less than 30 minutes of movement or thinking a day.

I am up to 2 or 3 hours consistently or I can push and do up to six hours if I am taking the next day or two off.

Cons:

It messes with my balance.
It messes with my blood sugar - which is why we think my balance is so off. If I eat something small every couple hours my balance is much better.
All those little pains I had forgotten about, yeah, they are still there and now are something I have to deal with.
I am hungry ALL the time. There is no full setting to my digestive system, but I also get sick to my stomach easily - so when I eat too much it bounces. Lots of tiny meals!!!!

All in all, it has given me back a life... but I am going to see if there is something that does not mess with my balance so much. Most people I have talked with do not seem to have the issue with balance that I am having.

yadlim

WoooHooo you go Muji!!! Yes, gabapentin did wonders for me, and I'm thinking it's helping more so now, after doc decreased a lot of my other meds I was taking this past year. Gabapentin/neurontin not only helps nerve pain but would be good (as for psych, such as anxiety...) I'd just found that out today, as well as restless leg syndrome (I have). Yep it's one that I've been on for many years now, and not bad side effects!! It is safer medicine in that not bad side effects for many people. Hope it'll help you. It was reduced a couple months back and still works good. : )

Neurontin's used off label for anxiety.
If it does not twink with your kidneys? Try it, methinks.

If it makes you more optimistic feeling, Muji, back in the year 2000, my rheumatologist told me I'd be in a wheelchair by 2010. Well, I am still on my feet, walking just fine. (a bit of difficulty, but hey, walking right.)

Well wishes at your doc's appointment. Neurologist is a wise choice. I am grateful that you will get some relief. Good luck Muji. ((( hugs )))

Jeez, sorry I keep adding on here!! lol. I also use lidocaine ointment; it is 5% lidocaine. It helps tremendously for joint pain between toes.... a wonder ointment for me. It numbs that pain instantly and I sleep good. Have used it also for many years and it still works great. (for joints), or tendonitis is what I have actually between my big toes and other toes, as well as soft part of underneath feet. I rub it all over those areas.

I believe my dads on that one and he's been in level 4 kidney failure for well about six or seven yrs now. On dialysis for three. He wasn't hardly walking course now he's not for other reasons and now the disease that screwed his kidneys killed the nerves in his feet so he always has that odd feeling but it is standable.
Adds my pompom shake... u can do this muji!

Good luck. Hope it isn't as difficult as u imagine it to be. I have my smear test tomro which means removing lower clothing. I'm well scared so I know how u feel. X

Also have used lidocaine 5%, in patch form, on lower back, loved it for keeping down the irritation of scar tissues for me. Let us know how it goes, okay?

DS PTSD sure is the quickest support site ever! Thanks so much for the fast support just for the fact that I've got these doctor's appointments and that you know how that goes with PTSD. Then I'm really grateful for the neurontin info, pro & con. I'll get back to you after the appointment today and keep you posted.

GRACIAS!

So sorry about the uncomfortable you experience at the Dr. I will be there in spirit holding your hand and keeping you safe fr
Wrong doing...!!! I'm impressed with your strength and determination to not let this kidney deseas distroy you...!!! Good luck with the new medication...!!!

DE NADA!! Muji, you are yes an inspiration because you always seem to overcome all that comes your way. Don't be afraid to be vulnerable though when some things we cannot do anything about, that is hard. I am also with you in that doc's room in spirit, and am keeping you in my thoughts all day. And forever and ever for that matter!!!

The proverbial nickel's worth of free advice, Muji......

Whether or not it helps relieve your pain, and/or how your body reacts to it .... are intensely individual.

That said ... if it were me ... I'd suggest (insist ?) that they start low, and go slow.

Meaning .... start with a VERY low dose, and ramp up the dosage VERY slowly.

If it were me ... I'd also familiarize myself with the (known) adverse effects associated with Gabapentin/Neurontin*, and try to stay very tuned in to my body ... before they upped the dosage ... to see if I was having any adverse effects.

I've mentioned before that I am BIASED on this one. I had a horrible reaction to Neurontin when they got me to 3600mg/day. Wound up flying halfway across the country to get specialized care.

It's an off-label use of an anticonvulsant medication. I think it's important to know that.

From June of this year .....

"Pfizer Inc has agreed to pay $325 million to resolve claims it defrauded insurers and other healthcare benefit providers by marketing Neurontin for unapproved uses, its second settlement over the epilepsy drug in six weeks."

Now ....

NONE of the above means it's not safe for you.

NONE of the above means it won't help you.

But the two classes of drugs that most commonly trigger serious adverse reactions are antibiotics and anticonvulsants.

There's reason to be careful, here, and ... careful may simply mean ... "start low and go slow."

Lastly .... this is from PubMed:

"Gabapentin toxicity in patients with chronic kidney disease is underrecognized. Patients with chronic kidney disease often receive inappropriately high gabapentin dosage for their kidney function, occasioning overt toxicity; advanced age and comorbidity predispose these patients for toxicity. Heightened awareness of such preventable risk, amid the chronic kidney disease epidemic, would be cost-effective and improve healthcare quality."

The article is titled: Gabapentin toxicity in patients with chronic kidney disease: a preventable cause of morbidity.

http://www.ncbi.nlm.nih.gov/pubmed/20362757

It would seem prudent that ... if you do start on Neurontin ... you ask about baseline and ongoing blood work to monitor your kidney function ... though I'm guessing that's pretty much routine for you, these days.

Fingers will be crossed for you ... whichever way you decide to go.

*http://www.accessdata.fda.gov/drugsatfda_docs/label/2009/020235s041,020882s028,021129s027lbl.pdf