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Old 03-04-2009, 02:27 AM #1
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Default Totamax

Has anyone had success or lack thereof with Topamax for PN? My neurologist just started me on this drug while I'm also on Neurontin. Thanks.
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Old 03-04-2009, 07:19 AM #2
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Default I think we've had--

--a few people who've reported good results with Topamax in the past, and a few others who said it didn't do much.

Topamax has an interesting side-effect profile compared to the other anti-epileptics though--it's the only one I know of in which weight loss, rather than gain, tends to happen. Doesn't seem to promote the carb craving that Gabapentin, Pregabalin, or some of the others do.

One other thing I should mention--people with high eye pressures or pre-glaucoma have to be very, very careful taking Topamax--in fact, it's usually contrindicated, as it seems to have the effect of increasing said pressures. (People with glaucoma are warned away from it.)
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Old 03-04-2009, 07:48 AM #3
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Lightbulb

This drug has alot of major side effects.

1) Changes in ocular pressure (as Glenn has stated)

2) causes kidney stones in some people

3) causes metabolic acidosis in up to 30% using it.

So you need careful monitoring, frequent eye exams,
and blood tests for serum bicarbonate.
Some doctors do NOT monitor patients closely enough when
ordering this drug. So keep that in mind.
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Old 03-04-2009, 08:44 AM #4
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Default

It caused me to lose my short term memory for 3 months while taking it.
I couldn't remember anything and was in a brain fog like a bad dream.
Once off it, everything came back to 'normal'. It did not help my pain or Sx from PN. I never got to titrate up to the dose my doc was aiming for (400mg/day).
It should be titrated slowly in 25mg increments over a long period of time. I didn't like it. It did cause me to lose 5-10 lbs over 3 mos, though.
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Old 03-04-2009, 10:09 AM #5
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Quote:
Originally Posted by nide44 View Post
It caused me to lose my short term memory for 3 months while taking it.
I couldn't remember anything and was in a brain fog like a bad dream.
Once off it, everything came back to 'normal'. It did not help my pain or Sx from PN. I never got to titrate up to the dose my doc was aiming for (400mg/day).
It should be titrated slowly in 25mg increments over a long period of time. I didn't like it. It did cause me to lose 5-10 lbs over 3 mos, though.
Yes... this drug has been called "Dopamax"
I think it is part of the acidosis aspect of it.
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Old 03-04-2009, 10:15 AM #6
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My DD is on Topamax for severe migraines and it has helped her so much. Her Neuro is going to wean her off of it soon, so he says.
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Old 03-04-2009, 12:39 PM #7
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Thanks a lot everyone. I do have glaucoma, somethng that my neurologist may have overlooked. I'll address this with him.
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Old 03-04-2009, 06:18 PM #8
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Quote:
Thanks a lot everyone. I do have glaucoma, somethng that my neurologist may have overlooked. I'll address this with him.
I would go directly to my eye doctor, not the neuro. I work for an optometrist, and as soon as he found out I was on Topamax, he put me in the chair and checked my eyes.

I was on Topamax for nearly a year, with no results. My neuro at the time kept increasing the dose, thinking it would stop my headaches...never happened. I also did not lose weight on it, although it does curb your hunger, after going off it, I was very hungry for months, it seemed.
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We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!
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Old 03-05-2009, 09:52 PM #9
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Quote:
Originally Posted by Augie View Post
Has anyone had success or lack thereof with Topamax for PN? My neurologist just started me on this drug while I'm also on Neurontin. Thanks.
I and 3 of my cousins have peripheral Neuropathy. All of us were put on Neurontin and 1 cousin is still on it. Two found Neurontin didn't help and they are taking Topamax, which they say has helped both their pain and weight. Neurontin made my head foggy so I stopped after 2 months. I tried Topamax. Within 5 minutes of taking my small first dose, I turned bright red from an allergic reaction and had to be taken to the hospital. This is the only thing that I have ever had any type of allergic reaction to so I was very surprised. Most people won't be allergic, but whenever you take any drug for the first time, make sure that someone else is present to assist you if needed.
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Old 03-05-2009, 11:11 PM #10
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Default

Helps with headaches.
Can cause heartache with memory.
My thought is to take the smallest dosage that might make a dent in a bad headache/migraine problem (or whatever the health issue might be).
Try natural supplementation combined with the Topamax....also relaxation. From personal experience...again...my thought is to keep the dosage as small as possible.
It's a weird medication...I could go on and on and on.....

p.s. The glaucoma would concern me...there are ocular warnings w/ this medication!

Last edited by Vowel Lady; 03-06-2009 at 07:40 AM.
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