nuerontin

[Bea]

I am seriously asking my uro to put me on a ad and I don't want to gain the wait.. but i am noticing that they are helping you all with our IC pain and frequency.. and I could really use help with the depression I am feeling since my Ic came back full fledge two weeks ago.. what are you views on this...

also I am almost embarresed to ask my doc for this..

[lotsofgirls]

Hi Beaf,

I am not on neurotin but I am thinking of going on it too. As far as the weight gain goes, its a tough one. I have gained alot of weight in the last year but not from meds but from not being able to exercise and stress. I hope you feel better soon.
Cath

[Iris]

Hi Bea, I am assuming by ad you mean anti depressant? I am on Effexor-XR and Elavil for my IC and it has really helped, I know a lot of anti-depressant meds are being used for pain now as it helps with the nerves I believe. My Nurse Practitioner has put me on them as I was very depressed after I was first diagnosed and we tried several anti-depressants that did not work until we found the right combination. I know I was a little embarassed at first because I have never suffered with depression and it effects until then, but she is an excellent NP and really has done a lot to help me with my IC and the feelings that go along with it. Hope you can find something to help you out, take care and let us know how you are doing, hugs Iris hi

[Bobbie D]

I just started taking Neurontin 2 weeks ago. It has already helped a great deal. Have those of you who take it noticed continued improvement as time goes by? I am taking 300 mgs 3 times a day. How much do you all take?
Thanks,
Bobbie D

[Katrina]

Continued immprovement, can't speak to, I take as needed and is my favorite pain killer. I take 300 mg 1-2 pill 3 times a day. (So I can take 600 mg on the bad days)
I think it is in the category of anticonvusant
http://www.pfizer.com/download/uspi_neurontin.pdf

[tcbc1989]

I have been taking Neurotin for a year-1100mg three times a day and I am still having IC pain! I wish I was as lucky as the rest of you. So I am slowly weaning off and going to try Topamax.
I have not gained any weight but I have no appetite when I am in a flare up.
Good Luck...TC frown

[auntiedeb]

I am on neurotin it is used for nerve pain, I am on 100 mgs 3x a day, I am on imprane for the night pain and zoloft for my depression and darvocet for pain. When I flare, I am in pain, I have my good and bad days. When I see the uro in DEC going to ask him if we could up my neurotin to see if that will help the flares subside more. Good luck.

[tcbc1989]

Well, after 3 days of trying to wean myself off of of Neurotin, my IC bladder pain is unbearable. So I guess it really is working for my neurogenic bladder pain! So I am back up to 1000 mg three times a day and will increase it to 1200 mg if I can tolerate it. The only side effect I have is that it is hard to wake up in the morning and I am exhausted at the end of the day. No weight gain. So I guess I will not get to try the Topamax. No one has responded to my posts about it so I am assuming it is not used much for IC. I am sitting here with ice packs now and at this moment: : it is the only thing that is working. TinaC. banghead

[Lyn40]

TinaC-
I know a couple of people with IC that are only on 100mg of Neurontin. Amazingly, they think it is helping them.

I have taken Neurontin for spinal pain. My doctor at the pain center told me that people don't tend to get any substantial relief with doses under 1800mg. As for my IC, I haven't noticed any difference in my pain level with 800mg a day. My Uro does not typically prescribe Neurontin for IC pain, but he did say it may help my IC as well as my spine.

I know everyone is different. I personally do not like that drug. It makes me spacey and my comprehension/thinking skills are deeply affected. Everytime I increase my dose (even slowly), I end up backing down. Its just so hard to know which avenue of drugs to go with. I just want to be comfortable and not lose my mind in the process!

Healing thoughts to you,
Lyn grouphug

[emeralds333]

I have been on 3200 mg of neurontin for almost 2 months now and I have noticed a considerable help in my pain levels of IC. I still have break-thru but even that is better than "constant" pain. I go into the dr on Monday and I'm considering talking to him about upping the neurontin a little more to see if that would help more. Right around my period is a really rough time for me "IC wise".

I have not gained weight with neurontin. I do get really tired and my memory is a bit foggy at times but only to the point that it can become an irritation. Others have had alot worse side effects from it.

As for antidepressants.........the neurontin has really helped my mood swings. I do need to be on an antidepressant but have not found one yet that will work for me, with all the other meds I'm on.........so as for now, the neurontin takes care of that also. Everything but about 12 hrs right before my period hits and I can grit my teeth through that. :)

[Lyn40]

Does anyone know if Neurontin typically helps with mood swings or depression? I have become sad since I started taking it, even at a small dose. It could be coincidental. I am just wondering if that may change the longer or larger dose that I take. :confused:

Lyn

[Ginny Doll]

I think I am a neurontin success story. I have been on it now almost three years. 300 mgs. 4x a day. When I tried to go off it my pain returned fast and wiht a vengeance. So I learned my lesson on that score. I went right back on it. I am also on Elmiron, Ditropan XL, and recently added Pamelor (for depression AND pain). I found the first year neurontin acted as anti-anxiety med for me as well as a pain reliever. I liked that relief but I was (and am) also spacey and forgetful from the drug. The second year neurontin seemed to remain a good pain reliever but its anti-anxiety benefits for me were gone. I became anxious every time I had to urinate. I just dreaded using the bathroom wondering if this time was going to be the burning one or two incidents of the day. (I had tried Elavil before having luck with neurontin and had such a bad time with Elavil. Felt paranoid on it in addition to eating all day long. The personality change I was experiencing scared me and I slowly got off of it while under the doctor's care.) I was reluctant to even consider another anti-depressant after that experience but I felt the blues were getting worse. Teri had had some luck with Pamelor and that stuck with me. My doc tried me on Effexor and later Lexipro and I had bladder trouble with each.
So I asked him to try me on Pamelor. Since it is sold in generic form, I figured it might be an inexpensive drug too if it worked! I knew Teri was on neurontin and had no problem taking Pamelor along with it. Maybe I would fare as well. My doc told me to expect dry mouth and he was right. I have a water bottle with me at all times. Anyway, I was amazed how my life changed on a dime! The combo has been the best. I have been in remission now since July, I still can't believe the difference in how feel and how quickly the remaining bladder pain subsided. I used to be unable to sit for very long due to burning but now i have more time. I have larger choices now regarding foods I can eat. It is wonderful. Plus I feel really great and much more positive. I look forward to every day. I only drink water though and nothing else. I have been going out now and having fun. I can't believe this is me! There were days in the past three years when all I could do was get to the IC board and then back to bed. I remember that first year vividly. I cried buckets over the searing pain. My regret is that I didn't get the Pamelor sooner. Instead I kept waiting and hoping I would miraculoulsly feel better emotionally. I felt so stuck. The pain was better but i felt like a zombie. So here I am today feeling better than I have in years. I am still forgetful, but I don't feel so upset about it. The pain relief has been wonderful! I know it may not last forever so I am taking it day by day and hoping for the very best. Many of you speak about hair loss from Elmiron. My hair has thinned some but more this year than ever. I really do notice it now. But I am not bald by any means. Just limited as to what i can do with this short do! I wear hats a lot. All I know is that I am so grateful to be happy and out of pain ... my hair really seems secondary to this wonderful remission. Wishing you all pain free days and a drug combo that really works. It is just too bad we are all so different. There is just no set formula for us collectively. And each of us experiences pain differently. It is frustrating! But don't give up trying to feel your best. You have to be an advocate for your own health. Speaking up is worth it! If you saw me three years ago you would not believe how very far I have come! Hang in there and I am saying prayers for each and every one of you with IC! Hugs, Carolyn angel

[Bobbie D]

Carolyn,
What strength Pamelor do you take. I am on Lexipro now and think it is bothering my vulvodynia. I want to cal my doc and see about changing to something else. Pamelor sounds promising. BTW, I am also taking Neurontin, 1200 mgs daily.

Hugs,
Barb

[tcbc1989]

hi everyone..thanks for all your input about the neurotin. It really does work differently for everyone. I know for a fact that some of my IC pain is neurogenic because when I am not on neurotin,while I am peeing and just when I am done: I have shocking, tingling pain that goes down my legs to my toes and my arms to my fingertips...neurological pain in nature. Narcotics just dull those sensations but get rid of the pain in my bladder. Now that I am back on the neurotin, the neurological pain is completely gone but I still IC pain in my bladder. It feels like i am peeing broken glass.
Tina C eek

[rnewman]

Just a quick note...
Neurotin is not an antidepressant and will not help with mood and feelings. It is an atypical anticonvolucent. Kind of like topamax...although topamax is newer and has a little bit of a different action.
Just wanted to let you all know.
Rachel

[Debra]

Rachel is right-Neurontin is an atypical anticonvulsant. However, it is used with some frequency by psychiatrists as it is believed to have some mood stabilizing properties (like some of the other anticonvulsants, like Depakote, which is used pretty frequently for bipolar disorder). I am a psychologist and have come across a number of people who are on Neurontin for mood reasons. However, people have said that it does not work as well for mood stabilization as some of the other anticonvulsants do.

Just my two cents,
Debra

[readingmom]

I have been on Nuerontin for about a year and ir really helps my nerve pain. I am supposed to take 300mg three times a day, but I can't function if I take that much. I try to take it one or two times a day. If I am having a lot of pain, I take all three doses. I also take Effexor 150 mg one time a day. I also take Elmiron and Visteril. We all sound like walking pharmacies. I am so glad that I have found you guys, because I have been thinking that I was the only one out there. It's great to hear other peoples success stories. I am also one of those who can't eat anything hardly!! And I love tomato sauce and chili and all those spicy foods!! I miss them sooo much!!!! I can't even take a bite of tomato-y stuff. I am in bed for three days if I do. Good luck to everyone seeking answers.

Christie(readingmom)

[Misery]

Don't B afraid 2 ask 4 help !!!
A D have saved my life and sanity !!!!

[tcbc1989]

May,
I am so sorry that you have to have surgery and have your bladder removed. I will pray for you...i know my bladder has a small capacity also but pain is my major issue now. I cannot drive being on 3300mg neurotin daily and i am very forgetful and doopey. Well, let us know how you are....Tina C angel