Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Neurontin--Nerve Pain....

Hi Everyone,
I haven't been on the site for at least a year. It's good to be back! My Reiters has been pretty quiet for the past year, but the last 4 weeks it has flared its ugly head again.
I have compression of C2-C3 and it has pinched off my occipital nerve causing severe nerve pain (unrelenting the last 4 weeks). I've started on Neurontin for the nerve pain. I'm only at 300 mg, per day so far. I have to gradually build up to 900mg. Apparently, it's only effective at a minimum of 900mg. Just wondering if anyone here has ever been on Neurontin for nerve pain? (it's traditionally used as seizure medication but is widely used to treat nerve conditions). Has anyone been helped by Neurontin?
I was on it 4 years ago but was unable to increase to 900mg due to side effects. I am hoping this time I can tolerate the dosage. Do you have any other tips for medications that may help nerve pain, or physio techniques etc.? TENS? I've started physio now as well, and we started doing manual traction today...
Thanks for any input.
It's nice to touch base again on KickAs! It was always a very supportive community.
P.S. Thinking of doing the apple diet to seeif it will quiet the flare--what does the olive oil do at the end of the cleanse? (Just curious).
Thanks
Rene

Rene, aloha

i've done neurontin/gabapentin for some time- years now.

my primary care dr. read my pain diary and just concluded at least some of the stuff i was writing about
was nerve related...pains in leg, spasms in the legs...he started me on 900 mgs, said it ought
to provide some relief...turned me into a numbley peg. so i cut down; and after starting enbrel
cut it further to 200mg per day...it's been very effective for me...and i appreciate it's kind of
sedative effect...i only take it a couple hour before bed...if i wake and kimmel is on, it's time for bed.

this is not something you want to drive a car after taking...

all the best
hope it helps

I have been using anodyne therapy for 2 years now. I am off almost all meds because of it. www.anodynetherapy.com Take a look. You might find 30 min a day of this is much better than the "coma" causing meds that you are taking

Hi Rene,

I took Neurotin for nerve pain and tremors a few years ago and did good on it for six to eight months. I was surprised after having such good luck on it that it stopped working all of the sudden around the eight month mark. I have other friends with back problems and nerve pain taking it with good results for years. Good luck with it this time.

Brent

Hi Rene,
I took it with a cocktail of a few other drugs and have had great pain relief. I never went higher then 600 mg in a day. I however also took a small dose of Amitriptlyine at bedtime, and then Effexor was added and I was able to decrease the Neurontin to 100 mg twice per day. If you don't get enough relief or can't cope with the side effects, weight gain being horrible, and I had such severe constipation. Make sure your doctor adds another med which is prooven to help with neuropathic pain. Often one drug doesn't give full relief, often takes a cocktail, but worth it when you find out what works best for you. P.M any time.I have had neuropathic pain from the A.S for twenty years, and the last eight have been my best with regards to pain control.


Janet

wow--thanks for all your replies... It's great to here that the Neurontin might work at the low dose... That's very good news... I've shyed away from the antidepressants as I had a hard time with side effects and am allergic to Amitrypline... but I'm planning to add in a muscle relaxant for the short term. I'm allergic to flexeral, but hopefully I can find something different that I wouldn't react to... I tend to have bad reactions to alot of meds--hence difficult time to find a good cocktail for me.. but I'll keep at it...
Hopefully the Neurontin will work out for me!..
Thanks for all the input....

Rene

Julie,

I remember you well, got similar things happening I reallly know what the occip' nerve pain is like and it's no picnic.

the neurotonin did n't help much at all infact for the pain it helped with I would n't take anything anyway.

I've been on tegretol, its helped alot more than neuro'n, and when it fires up taken out alot of the really unforgiving electrical shock type pain. Now more burning and a bit easier to tolerate. It's close thing trying to walk enough to stop the bad stiffness and not too much where you drive the neck wild.

Hope things improve for you,

Dave

I have taken Neurontin in the past for my Dystonia, BEB, Meige in the past. It did not help me a lot with that. I have a nerve root pinched at L5 and have been wondering about it for that. My hips hurt so bad and even though the joints are wearing out, he says he is sure some of the pain is that nerve pinched in the back so we may be trying the Neurontin again.

I hope it works for you and you get some relief. Welcome back. Don't stay away for so long.

Blessings.
Possi

Julie,

I can't remember if it was you but did n't your Dr say that your Re Arthr could n't progress to Ankylosing stage....

I have n't found endep/amytrip has done much good for the occiptial pain was up to 75mg last year did n't touch it.

Tramadol seems to be the best pain killer for the moderate pain, but once it gets going not much helps it's close the eyes and batten down the hatches. Outside of hospitals not much helps.

Dave

Julie,
Just rememebr we are all different. Neurontin also causes severe fatique at first I slept most of trhe first weekend, but your body will adjust so don't be too fast to give up on it. I tried Tegretol and it was worse for me, so dizzy. Can you try another anti-depressent like Nortriptyline? Is it an allaegic reaction you have ?

Janet