Anyone on Neurontin?

[soccermom32]

Brand name is Neurontin and generic is Gabapentin. Its supposed to be used for relieving certain types of nerve pain. I believe its an anti-seizure drug! My doctor gave me stuff to read about it and said he's had great success with it.

Anyone out there on this one?? Love it, hate it? Side effects?

Thanks!

[mary124]

I use to be on it (not for my IC-- but for back pain. Loved it. Had to get off of it however, due to being on Topamax. ( you shouldn't be on both). If you do get on it though, you have to go slowly with it-- (100mg at a time- can't remember if its for a week or what- its been that long.) Good luck!)

[mom_in_ma]

I'm not on it, but I've heard of others here who have had great success with it.

[bunnykinb]

I was wondering the same thing too. Someone suggested it since I don't like the cravings I am getting with Elavil. Hope some more posts come in.

[jen74]

I just started taking lyrica, which is on the same order as neurontin. I also took neurontin a couple years ago for nerve pain but had to stop it because it upset my stomach to much.
Jen

[sacausa]

I love neurontin....... it helped my IC pain much more than ultram, vicodin and plenty of other pain medications

[mich2604]

I love it. I was hesitant to take it because i didnt tolerate lyrica all that well. But neurontin has helped with my bladder burning, havent had to take a urelle in awhile. Also helps with my VV....my normal discharge would burn like crazy and now it doesnt. Im only on 100mg but my NP wants me to go up to 200mg and Im just trying to find the time to try it during the day to see if it makes me too tired.

I would give it a try.

[ihurttoo]

I have been on it for about 4 yrs. My dose for a long time was 300 mg 3 times a day. It seemed to help at the beginning, but I am not sure if it was the Neurontin, or something else, since we started so many things about the same time. Since I was feeling better for a while, my Dr. didnt want to take anything away, since we didnt know if it was a specific med helping or the combo. But, since my pain worsened over the last few years, I ended up going to a pain clinic. They put me on Morphine and Lortab. It helped alot at first, but I think I have gotten used to the dose, and it doesnt help as much as it did. But, the pain Dr. wanted to try increasing the Neurontin before we did anything else. So, he has been titrating the dose over the last several months until it got to the max. The increase didnt really do much except make me sleep and eat all the time. But, there was no difference in my pain level. So, last month, they started titrating it back down to get me off of it. I will be off of it entirely next week, and they wrote a r/x of Keppra for me to start then. It is also an anticonvulsant. The anticonvulsants are prescribed frequently for nerve pain. Since they arent sure if some forms of IC could be nerve related, that is why so many Drs. try it. In my case, I definatlely think mine is nerve damgage from when the Endo grew thru my bladder. So, hopefully the Keppra will work. But, if it doesnt, the NP said we will try Lyrica next. I am really hoping it will help.

I hope the Neurontin works out for you. Alot of ICers get alot of relief with it. I hope you will be one of them.

Hugs,
Amy

[smcclafferty]

I'm on 100 mg. per day as a migraine preventative...I only started it a few weeks ago, so I'm not sure how it's working, but I believe it may be helping so far. I don't notice any side effects, but this is a low dose.

[Berkshire Road]

I'm trying to get off it, now that my symptoms are starting to improve. I'm really not sure if it helped me; it did make me sleepy and weight gain is a common side effect.

[em1]

I was put on Neurontin for seizures & migraines. I was pleasantly surprised when my IC symptoms stopped. I took up to 3600 mg daily for approx 12 yrs.

[dvmmom]

I have been on Neurontin for a couple of years now. Started with 100 mg, now up to 800 mg twice daily. On a bunch of other meds, so was not sure how much it was helping, my pain doctor said I could go up to 3200 mg per day. Does not make me drowsy during the day (maybe because I have been taking it for so long!). I ran out of it once and after 2 days was in severe pain, back in bed in a fetal position! So resolved never to run out again! Obviously, it was doing something. Give it a try!

[JanL]

Hi! I started Neurontin in Oct. I started Physical therapy at the same time. I think the Neurontin was part of my incredible improvement. It made me feel dizzy at first--what I thought a hangover would feel like. The nurse told me to just slow down on my dosage ( I was taking 100 mg 3 times a day). My new urologist wants to up my dsoage to 100 mgs 6 times a day. This has been hard because I forget to take it sometimes. The way my brother explained it to me, you have to be careful when you stop this medicine. You should always slowly taper off of it and never go off of it cold turkey. He said that I would notice an increase in pain when it was time for my next dose and might become more irritable at that time also (which I have noticed). It seems to have been a very helpful medicine for me. Hope it helps you.
Janice

[Sharyn]

I have just requested Neurontin from my doctor. He has yet to get back to me. I take Vicodin but it doesn't seem to be helping. Since my Uro doesn't prescibe pain meds, I depend on the my GP. What does a pain mangement doctor do?

[Dona]

A new dr that I saw for VV prescribed it for me. I took it only for a few days and noticed some dizziness during the day, and didn't like it. It also didn't make me sleepy like they said and so then I wasn't sleeping at night. I usually took elavil at night. I stopped taking it a month or so ago after getting very sick w/pneumonia and sinus/ear infections. I was thinking about starting it again after reading how some of you have had success w/it.

How long do you have to be on it to notice a difference? At what dose do people usually feel it working? Does anyone know if you can take elavil at night when on Neurontin?? I also think I read that the dizziness should go away after some time on it??

Any info would help, I know I didn't really give it a chance the first time so I'll try it again.

Thanks!
Dona

[Sharyn]

I started taking it about 4 days ago. I experienced some light headless, but not enough to bother me. My doc only gave me 100 mg and I take it 3 times a day. I did notice some relief so I will continue taking it. I had a heprin instill yesterday and have a lot more pain today. I hope I am better tomorrow. I take Tylenol PM at night and 1 neurontin and 1 adarex. I slept through the night. Today I took a Celebrex and it seemed to help. I was told my the Pharmacist that Neurontin does not interact with other drugs.
I was pain free for about 8 months, so there is relief in sight. Hope this helps.

[Sharyn]

I started taking it about 4 days ago. I experienced some light headless, but not enough to bother me. My doc only gave me 100 mg and I take it 3 times a day. I did notice some relief so I will continue taking it. I had a heprin instill yesterday and have a lot more pain today. I hope I am better tomorrow. I take Tylenol PM at night and 1 neurontin and 1 adarax. I slept through the night. Today I took a Celebrex and it seemed to help. I was told my the Pharmacist that Neurontin does not interact with other drugs.
I was pain free for about 8 months, so there is relief in sight. Hope this helps.

[Berkshire Road]

I take both neurontin and elavil at night. Three different doctors suggested this, so I don't think there's much risk of interaction problems.

I posted earlier in this thread that I was trying to titrate down off neurontin bc. my pain is improving, and neurontin had made me gain a lot of weight. UPDATE: I titrated down from a total of 2700 mg per day to 1500. When I went below 1500, I immediately started having more pain. So, apparently it is contributing something useful to my medication "cocktail." Since my symptoms are less sever now, I have found my new lowest effective dose, 1500 mg. Since it does make me very sleepy, my doctor okayed my taking only 300 in the morning, 1200 at night.

I also started a lot of things at the same time, but it wasn't until I had some clear improvement that I could start to have an idea of which things were contributing and which were not. I've dumped elmiron completely (I take cystaQ and aloe vera, which seem to do a much better job for me), and increased the frequency of instillations from once a week, for a couple of months, once or twice a year to: twice a week, all the time, plus rescues (we do them at home now). I've added Klonapin, which relaxes me so I have an easier time peeing (don't need to push so much). From the beginning I've taken 75 mg atarax, all at bedtime. Well, that's all I can think of, mostly just wanted to update you on my thing with neurontinl

[Dona]

I was just looking at the prescription bottle and my capsules are 300mg each. That sounds like a lot compared to what others have said. I start out w/1 a day for 3 days then go to 1-2xday for 3 days then 1-3xday for 3 days and it keeps increasing from there. And once I reach 1500mg per day for an entire week I'm suppose to call the office and let them know how I'm doing. That's probably why I felt so dizzy. I wonder why mine are 300mg each instead of 100mg. Has anyone else started out w/this higher dose?:hmm:

Thanks!
Dona

[Sharyn]

Since this is what my GP gave me, I assumed it was the regular dosage. I am seeing my Uro on Wednesday. I will check with him. I thought Neurontin was going to my life saver but it hasn't helped much the last couple of days or it could be the dosage. I also have had a little intestinal reaction, although it isn't too bad. I don't see how you can function on such high dosages. Does it help with the pain?:angel:

[addie]

I tried Neurontin for several months, with no real improvement in pain. At my first follow up, the doctor asked if I had noticed any side effects. "No". Any memory problems? Ding ding ding! It was like a light bulb going off! "Yes!" I had just thought it was normal, but as soon as the doctor said that, I realized that it had been happening way too much lately (like thinking I need to get my sweater from the bedroom, and two seconds later I can't remember why I came into the bedroom). This was happening to me many times everyday! I stayed on the medication for I think a total of 4 months, never saw an improvement in pain, and had to get off it because the memory loss was driving me crazy. My doctor also suggested trying Lyrica, a med in the same family, but I refuse to try it because it can have the same side effect.
Not everyone gets the side effects, so hopefully you won't have it. But if you think you're being extremely forgetful all of a sudden, that's probably why!

[Sharyn]

I have been taking Neurontin for about a week. At first I noticed some improvement, but now doesn't seem to be working as well. I thought maybe I should give it more time. My Chrioprator mentioned the memory loss to me when I told him I was trying it - interesting. What dosage were you using? I am on 100 mg x3 per day.
I am thinking of going to PT. :angel:

[addie]

The dose I was taking. Sorry!

[radstudent]

I am taking 400mg of Neurontin 3x a day. I also take 75mg of Topamax. I did not know that you should not take them together. I have been taking both for around 2 years. I haven't had any side effects that I noticed. Of course I am on a lot of meds too.

[littlemyrn]

I was given 300 mg 3 times a day. I don't remember if it helped, but I started back taking it just in the afternoon and bedtime. It seems to help, in fact yesterday, I went 5 hours between dose of pain meds, when I usually have to take within 3 hours. I take 1/2 of a 7.5/500 Lortab 3 to 4 times a day. So I guess it is working some. I am going to give it a try for at least a couple of weeks. My daughter takes 600 mg. 3 times a day for seizures, has been on it since it came out.

[Berkshire Road]

My doctor said it was okay to take neurontin and topomax together, within some dosage limits. But I hated topomax, I had terrible side effects with it.

[Dona]

I haven't yet started back up on the Neurontin. I know I should give it another try. I think I was having some memory problems myself now that I think about it, b/c this last week or so I actually thought "wow, my memory isn't as bad as I thought!" But I've been off the Neurontin for about a month now.

It did make me very dizzy, lightheaded when I added the 2nd dose and I found it hard to work at my daughters school b/c I felt like I couldn't think straight. But I was also coming down w/a bad virus at the time and that turned into pneumonia/sinusitis/ear infection, so I attributed it to that. And my PC told me to stop taking the Neurontin when I got so sick and I just never started back up, although it's taken me along time to recover and I actually still have some fluid in my ears from the ruptured eardrum and that can make a person dizzy by itself!

I will let you know if/when I start back up and how I feel. I just don't see how neurontin can help me w/my symptoms though if it's mainly for pain. My main symptom is urinary frequency and spasm of the urethra that feels "uncomfortable" but so far not painful. Anyone have any thoughts on that??

Dona

Meds:

Ativan (lorazepam) 1mg - 2-3xday
(this anti-anxiety med has been a God send to me! I wouldn't be able to tolerate the frequency & spasms w/out it!)

Elavil 12.5mg @ night - helps me sleep!:pray:

Estrace 1mg -2xday -estrogen used to treat my premature menopause symptoms.

[shvlnose]

I was on Neurontin for a year and a half. Had to go off of it due to trying to get pregnant.

This will be one of the first drugs I add back to my cocktail after giving birth! Using 300-900mg at night, I was sleeping 7-8 solid hours a night for the first time in YEARS. Yes, it made me drowsy, but since I took it at night, that was a "side effect" that I wanted.

It also did help with pain levels - more than tylenol, less than vidodin (for me).

I liked it and plan on using it again in the future!
Aly

[Braedley]

my mother takes it for Trigeminal Neuralgia but haven't encountered use of Neurontin for IC yet...

I don't know if it would help?...interesting that they would think of it for IC...i'd be very interested to see how it works for people! i'm only on amitryptaline right now and it's ok...

[mary124]

cAROLYN: You take both Topamax and Neurontin together? my Pharmarist(?) and Neur. doctor told me I couldn't take it at the same time, and since I have been having pain in my head (not headaches) I gave up the Neurontin. Anyway, how much of both do you take? Because both actually helped me.
Thanks.