Is Topamax better than Neurontin for nerve problems??Posted by Sharon W on 6/19/03 at 16:08 (122382)
I just found this on the neuropathy.org site. It's about a study that shows Topamax to be much better for diabetic neuropathy than Neurontin. Now, I realize that what works for diabetic neuropathy wouldn't ALWAYS work for TTS -- but a lot of the same treatments seem to work for both problems, because both problems involved damaged nerves.
Check THIS out:
'Topamax also appears to REVERSE SOME OF THE NERVE DAMAGE that leads to a painful condition called peripheral neuropathy, one of the most common complications of diabetes, in which diabetic people often feel like their feet are being stabbed by needles or that their hands are on fire, he says.'
Wouldn't it be great if Topamax turns out to work that well for TTS, too?? Check it out at:
Re: Is Topamax better than Neurontin for nerve problems??Ed Davis, DPM on 6/19/03 at 17:51 (122391)
One good thing about Topomax is its good safety profile. It can be used on kids as young as 2 y.o. Is it better that neurontin? Hard to say, often yes but it depends on the patient -- different drugs work better for different patients and that is why there always seems to be room for more drugs in a class on the market. The 'latest and greatest' drug in that class is Zonegran. Zonegran seems to have a delay in its effect, that is, patients note no change for 2 weeks then gradually see a beneficial effect setting in. One potential advantage is that Zonegran often makes patients feel less 'spacey' than neurontin and topomax.
Re: Is Topamax better than Neurontin for nerve problems??Sharon W on 6/19/03 at 18:52 (122393)
Making patients feel less 'spacey' or forgetful than taking Neurontin does is a BIG plus!!
There are two things I would worry about, though, if I were considering changing from Neurontin to Zonegran. The first is COST -- Neurontin already over $300. per month, at the dosage I use; if Zonegran is the 'latest and greatest,' wouldn't it cost even MORE? We do have prescription drug coverage, the 'tier' type, but sometimes they don't cover the newer drugs AT ALL...
The other problem is, how would a patient change over from Neurontin to Zonegran? Presumably, a patient on Neurontin would have to 'step down' that dosage -- would Zonegran then have to be 'stepped up' gradually, in a manner similar to how it's done with Neurontin? ...And with reference to Zonegran -- the 2 week delay before patient notices improvement that you mentioned -- would that be 2 weeks begin AFTER the patient has finished 'stepping-up' to the desired dosage of Zonergan?
Re: Is Topamax better than Neurontin for nerve problems??Ed Davis, DPM on 6/19/03 at 19:01 (122394)
The question of switching over is a good one especially considering the delayed affect of Zonegran. There is some concern about using both simultaneously so I have seen many stop the Neurontin instead of stepping it down. I feel that the 'step down' approach may be better if done cautiously. Cost is definitely an issue.
The switch may be worth a try particularly if one has become refractory to the effect of Neurontin. (That is, patients needeing to regularly increase the dose of Neurontin as the therapeutic effect seems to wane). Despite the fact that Zonegran is new, remember that its effects may or may not be superior to Neurontin due to the considerable variability in patient response.
Re: Is Topamax better than Neurontin for nerve problems??Sharon W on 6/19/03 at 19:24 (122396)
Yes, I understand that patient response to ANY of these drugs is going to be variable -- but I'm very interested in the idea that Zonegran is not likely to have the forgetfulness/'spacey' side effect. (I do have that side effect with Neurontin, and it got worse when the neurologist doubled my dosage.)
I don't think I've really become 'refractory' to the effect of Neurontin -- but then again, that would be best determined by a doctor. When you live with a problem day-by-day, you may not always notice gradual changes taking place. And even if you do notice that you are feeling worse, or experiencing additional symptoms, how do you know if the cause is the 'refractory' effect (your body getting used to the Neurontin and requiring more to be effective), or the disease process itself getting worse?? Especially if your PN is 'idiopathic' so you EXPECT it to continue getting worse...
Sorry to be long-winded.
Re: Is Topamax better than Neurontin for nerve problems??Pam S. on 6/19/03 at 22:43 (122409)
This is very interesting. I will ask my pharmacologist what her opinion is of those two drugs also. I have a few friends with fibro on Topamax. It does act as an appetite suppressor and both of them lost considerable weight. It is very effective for pain other than nerve pain too.
I would consider switching from Neurontin. I was originally put on it for a condition called Restless Legs then discovered it was useful for several other problems I was having also. It is always a gamble to know if you should switch. Tempting because WHAT IT you were better on one of the other drugs????
I agree, I am only on 400mg of Neurontin and I am so forgetful. At least that is my excuse. When I go up on the Neurontin - say 100 mg more I get such a bad dry mouth. I wonder why that side effect.
I wonder if the Zonegram would also help with restless legs like Neurontin does? Thx for the info pam
Re: Is Topamax better than Neurontin for nerve problems??BevN. on 6/20/03 at 06:03 (122418)
This article on Topamax is interesting. I have been on the Topamax for about 3 months now and it does help the pain and numbness( I still have some and the stabbed by needles too) and the side effects are less than when I was on the Neurontin ( I could not handle the Neurontin side effects) . As far as weight loss , don't I wish :) No luck there for me :( But that is not why I am on it anyway. I need to have my cholesterol checked as it is high and the doctor wants to put me on med for it (heredity), so hopefully the Topamax will help that too as the article says . What is also great is that nerve fibers actually grew back -wow- that could lead to some great things :) Thankyou for finding us these great articles :) Bev
Re: Is Topamax better than Neurontin for nerve problems??Terry Z on 6/20/03 at 09:03 (122423)
Zonegran was my doctors first choice but I got ringing in my ears which she thought was very odd. It went away when they changed me to Neurontin so who knows. I would like to get off Neurontin but they just increased me to 2400 and my pain doctor wanted me to do go ahead with the EMG. My daughter thinks my memory is not the same, now with this increase who knows if that will get worse but I seem to be more tired. Neurontin has really helped I believe it's a double edge sword changing drugs. If you don't mind what side affects are you having from Neurontin?
Re: Is Topamax better than Neurontin for nerve problems??Sharon W on 6/20/03 at 10:18 (122431)
The only side effect I'm worried about is the forgetfulness. It seems my short-term memory cuts out intermittently. I also seem to be temporarily forgetting words I've known since childhood... I might blame it on age, or stress, or something else -- but I noticed a marked change for the worse in my memory when I started Neurontin, and another marked change for the worse with that neuro doubled my dosage.
The memory thing can be both embarassing and extremely frustrating; I would love to find something that works as well for me as Neurontin and DOESN'T cause me the memory problem.
Re: Is Topamax better than Neurontin for nerve problems??Kathy G on 6/20/03 at 13:27 (122449)
My sister takes Neurontin for Bipolar disorder and she, too, is forgetful. And her problems increased when they increased her doseage. She also has the problem remembering words and she does find it to be very embarrassing. On the other hand, she is so much better with the Neurontin that she figures it is worthwhile. Her illness, of course, is totally different from TTS.
My brother-in-law takes Neurontin for Piriformis Syndrome. He takes the maximum recommended amount. He has no problem with his memory and no problem remembering words. I truly believe that he is the exception to the rule since everyone else seems to have Neuro-Brain. It amazes me. I just saw him a couple of months ago and he is just the same as ever! Well, except the poor guy is in chronic pain with the Neurontin and the Ultram that he takes.
He did mention that his mouth is dry but he says that he just drinks more water which he should have been doing all along. My sister takes other meds that make her mouth dry so she doesn't notice any difference with the Neurontin.
Just figured you could use the input of two more cases!
Re: Is Topamax better than Neurontin for nerve problems??Terry Z on 6/20/03 at 14:38 (122462)
Sharon and Kathy,
Oh yes I also forget words and how to spell them, it is very embarrassing. Only once did I have a problem forgetting where I was in the car and I pulled over to collect my thoughts. If that happens again I will get off Neurontin who knows I could end up in another state. It sounds funny when I say that but it really could put me in danger. The dry mouth has been with me from the beginning so I do drink more water so that is a good thing. Sharon if you find something that works let us know.
Re: Is Topamax better than Neurontin for nerve problems??Sharon W on 6/21/03 at 07:35 (122519)
My experience with Neurontin does sound a LOT like your sister's -- except, of course, for our reasons to take the drug.
Your brother-in-law is obviously one of the 'lucky' ones -- at least, as far as taking Neurontin is concerned!
Re: Is Topamax better than Neurontin for nerve problems??Sharon W on 6/21/03 at 08:28 (122526)
I've had the same experience, except I didn't pull off the side of the road -- I just waited a moment, and then I remembered. It's like there are these holes in my memory -- like my brain is made of Swiss cheese...
I talked to my Dr. about changing to Topamax, but she's reluctant to change me from Neurontin because it WORKS...