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Re: Neurontin

Posted by Kathy G on 7/28/03 at 19:17 (125488)

My hands are killing me and I shouldn't be typing. I've had a bad few weeks, painwise, between my feet and the arthritis in my hands. The cortisone shot in my hand that I had done Friday didn't help much. I'm a bit discouraged. I'm wondering if the time has come to ask the doctor about Neurontin. My question:

What doctor put you on Neurontin? Your Pod or you Primary Care Physician?

Re: Neurontin

Dr. Z on 7/28/03 at 19:42 (125492)


Re: Neurontin

Sharon W on 7/28/03 at 19:59 (125497)

For me it was my pod -- first -- then my neurologist.

Actually, I'm in the (painful!) process of reducing my Neurontin now and gradually adding Topamax; I'm trying something new...


Re: Neurontin

john h on 7/29/03 at 08:52 (125523)

Kathy I assume you consult a Rehumotologist about your arthritis? My wife's hands do not look good but she seems to control the pain with things like fish oil, vitimin e, osteobiflex tripple strength. she also swims three days a week.

Re: Neurontin

BrianG on 7/29/03 at 17:46 (125586)

Hi Kathy,

A couple years ago, My HMO sent me to their Neurologist, who put me on Neurontin. It didn't help my pain at all. Also, the side effects were not plesant either. You may want to check them out, before asking about it.

If you have TTS, or other nerve problems, it may help. If you have PF, I'm not sure it will help you. One of the Neurontin side effects is weight gain. Topomax is just the opposite, weight loss. Just something to think about.


Re: Neurontin

marie on 7/29/03 at 18:27 (125595)

My neurologist (the evil one) put me on it. My family physician took over and slowly increased the dose. Yes there are some side affects. I had chronic headaches with the lower doses but as the dose increased the headaches went away...it was worth it. My legs were spasming constantly, I had electric shocks and my muscles were so tight I could hardly straighten my legs out. There were times I was in so much pain that I would get the dry heaves and throw up for hours at a time. The moment I started on the neurontin I could feel my muscles loosening up. As far as weight gain I am about the same as what I started and I simply watch what I eat. Fresh fruit, nuts, & yogurt are my new favorite foods. But occasionally I treat myself to desert before dinner. I learned that life is only for a moment and when my moment comes I want to know that I ate desert first and loved every minute of it.

best wishes, marie

Re: Neurontin

BrianJ on 7/29/03 at 18:52 (125597)

My doctor let me try Neurontin for my PF, and it has helped quite a bit. I'm taking 1200MG per day. No problem with side effects. It seems to work differently for different people, so in my opinion it's worth a try.

Re: Neurontin

Sharon W on 7/29/03 at 19:04 (125601)

Brian G,

Re: Topamax. I researched it pretty thoroughly before deciding to make the switch. It does tend to cause weight loss, rather than weight gain, and a (very exciting but very small) recent study showed it can actually heal nerves and cause them to re-grow! However, Topamax does have a 'higher profile' for side effects than Neurontin, especially for cognitive impairment and memory loss -- that means it's more likely to cause 'brain fog' than Neurontin is.

I thought you might be interested in seeing the response that this question about Topamax got on a message board for brachial plexus injuries. It was quite phenomenal - one little question about Topamax side effects got 174 replies!! (Obviously, there are LOTs of people out there wondering if anyone else has been having the same reactions to this drug, and going onto their computers to find out):



Re: Neurontin

Kathy G on 7/30/03 at 09:34 (125633)


You always find the most fascinating links! It's interesting to me because my brother-in-law who suffers from - okay, I've forgotten the name of it and I only took a pain pill that's mild and I don't take any Neurontin. Maybe my brain fog is just because I have a foggy brain! Well, anyway, he takes the maximum dose of Neurontin and Ultram recommended. He says he feels tired a lot of the time but has had no problems with memory loss, etc. My sister (his wife) hasn't noticed any lapses in that department with him. He's obviously one of the lucky ones and given how severe his condition is and I'll think of it later when I'm off the boards and not trying to, I'm glad he's been so fortunate.

I am reserving Neurontin as a last ditch effort. As you can see, my brain barely functions as it is! I have tried Ultram but it didn't help very much. I find that my Axocet (50mg Butabital, 650 mg acetaminophen) every 5-6 hours seems to take the edge off the arthritis and PF pain as well as anything.

I need to get some books to read on OA as I do better with books than I do with internet material but it appears that it often flares up and then calms down for a bit. I must be in a flare up period right now. I am wondering why the cortisone shot didn't work very well. According to what I've read on the websites, I guess it could mean that the damage to the joint is too advanced if one gets little relief from it. Today is my doctor's day off but I plan to call him tomorrow.

Re: Neurontin

Sharon W on 7/30/03 at 10:44 (125659)


I am very curious as to what your brother's doctor considers to be 'the maximum dose of Neurontin and Ultram recommended'. A doctor friend recently commented that she wouldn't go above 1800mg (the dose I was on) because 'above 1800 the side effects are worse, and the increase in effectiveness is not great.' Yet I have read of other doctors suggesting 2400mg as the appropriate maximum dose for Neurontin, or even 3600. I even read comments from one patient who said he was taking 7200mg of Neurontin and had never had any problems with it!! (Obviously, this is something that they do NOT all agree on!!)


Re: To Kathy

Pam S. on 7/30/03 at 21:45 (125731)

I am so behind in reading posts because my computer has been down. I am in the middle of a terrible flare of many symptoms TOO!!!! Misery does love company I hate to admit it. Everyone feels well in the summer!!! I feel depressed!!!

About the Neurontin...A sleep disorders specialist (neurologist) prescribed this for me at first at 200mg. Now 3 or 4 years later I am only taking 400 which is considered a low does. I think it has helped my sleep problems and my bladder pain which is nerve related too. It just seems the more docs I saw for my various pains the more Neurontin was recommended. Thank goodness I have not gained weight on it. I do not eat much sugar or carbs, however. I think I have fewer headaches on the Nerontin. I am now going up 100 mg. to help my bladder pain and as soon as that flare passes I can go back to 400. I think it is worth a try for you. It is not a big deal to wean off of if it does not agree with you. I know how you feel about taking meds. I feel the same way. I wonder if the ultram would help me. My elbow is killing me and I do not even play tennis or golf. I sound like an old lady!!!

I am sorry your hand hurts. Maybe you are in a flare too. Everything's is magnified when you are in a flare. My brain does not work at all either. Enough of my rambling. Is your daughter ok? Did she move home? Warmly Pam

Re: Withdrawing from Neurontin

Sharon W on 7/30/03 at 22:27 (125741)

Pam, Kathy,

I hope I didn't leave the wrong impression. The hard part of being weaned off of Neurontin (at least for me) isn't side effects from withdrawing the drug. The problem is withdrawing the pain control, with nothing (yet) to replace it!!

Anyway I'm not being weaned off of Neurontin COMPLETELY before starting Topamax; in fact at this point I'm taking 25mg of Topamax, the starting dose... it's just that I've heard it usually takes a couple of weeks for the pain killing effects of Topamax to kick in -- and I'm hoping that's true because so far, it's not helping.


Re: Withdrawing from Neurontin

Dorothy on 7/31/03 at 00:37 (125755)

Sharon W., you are so informative and helpful to so many here that I wish we could offer you some helpful information to help you make this transition. I hope that you can become free of pain and that it happens sooner than you expect.
Best wishes ~

Re: To Kathy

Dorothy on 7/31/03 at 00:40 (125756)

Pam S. - this flare will pass. Take some deep breaths and remind yourself that it will pass. Hang in there.
Best wishes ~

Re: Withdrawing from Neurontin

BevN. on 7/31/03 at 08:53 (125772)


I found that the 25mg. of Topamax did not do much either, it took awhile to titrate up to the 50mg . then up to the 100mg I am on now before the burning and the tingling pain really started to go away . I take the 100 mg. at night and it also helps me sleep sometimes too. I still have to take Ultram for the PF pain, however the Topamax helps with the burning , shooting pains, electric shocks, and tingling 8-(PIPE) Hang in there , girl, it takes time to titrate it up , we are here to cheer you on, okay =D> We will help you get throu this, okay :-? I really do hope that it does work for you after you go through all of this . Here's a big >:D< for you today to keep you spirits up :)
Have a nice day :) Bev

Re: To Pam

Kathy G on 7/31/03 at 11:07 (125783)

Thanks for the information on the Neurontin, Pam. I have to go to the dentist this afternoon but when I get home, I plan to take a stronger dose of Tramadol and see if that helps the pain. I'd like to stick to that if I can. I know this too will pass, but man, I'm so tired of hurting all the time!

Re: Withdrawing from Neurontin

Sharon W on 8/01/03 at 15:39 (125913)

Thanks, Bev.

You know what it's all about, right?? Of course you do. I don't want to be in pain but I also don't want to be woozy or have trouble thinking and remembering. What I want is for the problem to really get BETTER...!


Re: Withdrawing from Neurontin

marie on 8/01/03 at 19:51 (125944)


I am thinking of you! I hope that the topamax kicks in soon. Keep us updated. You're a great gal with alot of love inside you and I hate to hear that you may be in pain.:(

Best wishes, marie

Re: Withdrawing from Neurontin/Sharon

Tammie on 8/02/03 at 11:47 (125995)

Sharon, I am sorry that you have to do the change. I did to, but I did it by myself as i felt there was to many side effects with the neurontin. I went in told my pain Dr. he said ok sounds as tho it wasnt right for me.Started the topamax and I love it! No more sweet cravings,no more horrible memory lapses,Helps me sleep better along with other meds. The burning is still not in control it was before the stimulator surgery now I am out of wack again so hoping things calm again soon.

I just wanted to ease your worries a bit if I can that I really thought the topamax was the answer to alot of side effects that the neurontin gave me on top of everything else. I am happy with it . I hope it works for you! Be patient as it takes time to build up,careful not to fast as it can make you sleepy but he has me take mine at night so it is my help with sleeping! Good Luck!