Topomax ??????? - Neuropathy Message Board

Kathim · 04-20-2004, 06:25 PM

I am curious if anyone is taking topomax for their neuropathy????
If so how much and when.
How bout topomax and Neurontin together ??????

My DR is suggesting this.......I am on 400mg Neurontin 3 x day and he wants to add topomax at bed for 2 weeks and then go from there.

Thanks for your replys

Kathi

Ann123 · 04-20-2004, 09:16 PM

I was recently prescribed Topamax 25 mg at bedtime. I also take Neurontin and the Topamax is an addition. I'm sure the plan is to increase it.
I did not have many side effects with the Neurontin but do have some with Topamax- mostly tingling and tiredness. I cannot imagine if I were to take it in the morning. I have not noticed any pain reduction but then the dosage is still very low. It is not uncommon to prescribe Topamax with Neurontin for neuropathy. Hope it works for you. (and for me too!0

Ann

Kathim · 04-21-2004, 08:40 AM

Ann..thanks so much for your reply. It is nice to know someone else is in the same boat as I and that I am not alone. I am sorry we both have this dreadful affliction.

I am curious as to what the reason medically for the Topomax is???? Do you know????
From my brief reading on the drug...it seems more for the mental aspect in our cases as we "DON'T" have epilepsy. I know neurontin is the same basis.

I do get relief from the neurontin thank god.....I dont like taking it but have no ther choice.

My DR also wants me to take 25 mg at bedtime. Do u take the neurontin at the same time??? How long have u been doing this????
I dont see how I can be taken off Neurontin and put totally on topomax????
ANy thoughts?????
My DR is a Rheumatologist and I have PN due to lupus. It is not that I dont trust him........I am just LEARY of everything !!!! AND......I am a VERY complex case and certainly dont need a seizure on top of everything else !!!!!

If u see this post I would really appre ciate hearing your story and etc.
I do feel it moving to hands somewhat the past 2 months.

Thanks............Kathi

Ann123 · 04-21-2004, 09:19 PM

Hi Kathi.

I am sorry to hear of your complicated case. I know it is awful to have to take all these drugs but what else can one do?

Both Neurontin and Topamax are anti-seizure meds. However they are being used widely off-label for nerve pain. Topamax is most popular for migraine sufferers who do not respond to traditional migraine meds. It is also popular for people who gain too much weight on other anti-seizure meds. The medical reason is based on treating nerve pain. The theory is that our nerves are misfiring and these meds are supposed to suppress that. Something to do with neurotransmitters. My neuro explained it to me and I've read about it online. Just can't explain it or remember it so well.

If you get relief from neurontin why do you need to take the Topamax too?
Is it that you are not getting sufficient relief?
Either my pain is getting worse or the Neurontin is losing effectiveness thus the addition of Topamax. Your body often does become tolerant to the pain relief of anti-seizure meds and you have to switch to a different one.

I have a facial neuralgia, I see a neurologist - he calls it trigeminal neuralgia - I am not sure if it is that (I hope not) but when I look that up anti-seizure meds are the typical treatment.

For one month I've taken the 25 mg Topamax at night. I saw the neurologist today and he upped it to 50 mg at night. I am also at the same time on the 2400 to 3000 mg Neurontin that I have been on for about 8 months. He said the plan is to slowly increase the Topamax and then begin tapering down on the Neurontin. You should never stop any type of anti-seizure meds suddenly.

I don't think you will get a seizure- after all these are anti-seizure meds.
Just be sure it is a slow taper off. My neuro is very experienced with these type of drugs and he says when starting one increase slowly and when stopping one decrease slowly.

Oh yes - Topamax does cause tingling of the hands and feet - this is the most common side effect -so don't think it is more neuropathy symptoms developing. My neuro warned me of it and it did happen, he said "I know it's weird - it treats nerve pain but makes nerves tingle, doesn't make sense."

Anyway, if it works for you, it is supposed to be highly effective. Good luck with it.

Ann