Has anyone taken neurontin for IC specifically?

[Lishypaz]

At my most recent uro appointment, my doc added neurontin to my regimen. 100mg 3 x daily with a probably increase up to 300 mg 3 x daily. I also have been recommended to University of Pittsburgh Medical Center to meet with a Dr. Michael Chancellor. Apparently he is doing some new trials and my doc wants me to get invovled. I had a hydrodistension/cystoscopy about a month ago to offer some relief (I get this for triage about 4 times per year) and this time it didn't work at all. My next step will be an insterstim (sp?) at University of Pittsburgh. I have never read about neurontin and a medication to try, but it is supposed to alter the nerve transmission. Anyone tried this. Please let me know! I am fighting with insurance to go to Pittsburgh--I live closer to Buffalo and this is out of state and a 3 hour trip, but worth it to try something to relieve the pain!

[Kara29]

Lish,

Neurontin is an anticonvulsant that they use for pain sometimes. I used it for years. I also used in the same family, Lyrica and Keppra. Lyrica seemed to work better for me than the Neurontin.

Good Luck to you!

Kara

[sacausa]

I've been using neurontin for a few years now!

Initially, I needed 300mg twice a day to feel relief but now I've been able to wean down to 200mg once a day.... anyways, I use it only for IC and it works great...

[Katrina]

I have been taking Neurontin for pain and sometimes frequency for a long time. I never have had any problems with it but many have gained weight just so you know.

It is one of the older anticonvulsants Keppra and Lyrca as well as others are newer and considered safer although the newer the drug the less they they know about it. My Neurologist plans to switch me off neurontin and on to Lyrica for my pain and frequency soon because of the fact that it is a safer a drug...less side effects and such. I guess if a doc were planning to begin with Neurontin now I would ask about that.

Please read all you can on the Interstim before trying it.

[Claredale]

I took it earlier this year for pain. It seemed to be working, but I was nuts, per my family. I want to try Lyrica, but I am afraid that I will have the same reaction. It messed with my short term memory and I was walking around like I was in a fog. There were days that I drove home after work and would kind of panic when I realized that I didn't remember driving home. Luckily my commute was only a mile! Very scary!

Tracey

[green_the_fish]

Yep, I tried it specifically for IC pain a while back. I took Neurontin from October 2004 to around December 2004, then I had to stop for insurance reasons. I kept my dose pretty low during that time. After that, I restarted it May 2005, and stayed on it until about July 2005. I got up to about 900mg that time around.

The thing is, Neurontin didn't really have an effect on my IC. On the other hand, it didn't have any negative side effects, either. Maybe I should have pumped my dose more, but after over a month on 900, I figured if it hadn't done anything yet, it probably wasn't right for me.

I would still recommend Neurontin, though. Most people don't seem to get side effects from it, and it's non-narcotic.
The downside is, it's expensive if you don't have insurance. You also have to gradually build up to an effective dose, and you have to wean off it very slowly if you want to stop taking it.

But, if I were you, I would want to try the remaining non-invasive options before the stim.

Good luck :grouphug:

[sandramac]

My Doc just gave me a script, for Lyrica 75 mg 2 x a Day. I was in my usual bladder pain, when i got the script filled. Took one while i was waiting.:woohoo: It has seemed to help the pain ! I cant belive i may have found somthing that helps. We will see how long this lasts. I have no idea how the dose goes and how long it works, Anyone have more info for me on it? Hugs Sandra:cat: :cat: :cat:

[dminton]

Has anyone experienced an increased awareness of pain a few hours after taking either Lyrica or Neurontin? I find it hard to tell, but I think that may be what happens to me and keeps me from really getting on board with this type of med.

Diana.

[Katrina]

I remember hearing a story of someone saying that taking neurontin felt like eating a big no no to her....as far as an increased awareness of pain...I would think that is the opposite of what I'd think happens with me. I am on muliple anticonvulsants and when testing my nerves my reaction to little stimuli is often lower than normal but not bad considering my meds.

[Lishypaz]

Thanks, everyone. I started the neurontin at 100 mg 3X per day and as of yesterday I am up to 200 mg 3x day. I can't say that it has helped yet the way it was supposed to, but my uro wants me to wait until I see him in three weeks. I still have not gotten permission from insurance to go to Pittsburgh--don't know if thats good or bad. I do notice my bladder specifically after taking the neurotin--I'm glad someone posted that because its very weird. Usually, I have severe pelvic pain and it feels like the bladder is being clawed at. Right after taking the neurontin, its very specific pain and then it seems to subside for awhile. I had been using a muscle relaxer and codeine periodically when the pain is really bad and doing the resuce instills every other day--today I had to go to vicodin which I try to stay away from. I think its because I am on vacation and I am able to notice the pain a lot more. When I am in school with the kids, I am so active and they are so needy I forget about the pain, but when I am home, its comes back full force! Two of my docs suggested going for diability (for this paired with the probably MS or fibromyalgia--conflicting diagnoses), but staying home all the time would kill me, I think. I will read more about the interstim and see where it leads me. thanks for the replies!

[dminton]

I think I know what you mean about the "specific pain" after taking Neurontin. That happened with me with both Neurontin and Lyrica. About 3 hours after taking either, my bladder pain goes up several notches for a couple of hours, then subsides. I hate that side effect. I'm glad I'm not the only one, everyone thinks I'm nuts. A pain doc said it is probably a heightened awareness of the pain. I don't care, I hate it and it makes me not want to touch either of these meds.

Diana