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  • #1

    Topiramate (Topamax)

    I know Topiramate has been discussed on this forum but it's been several years and the only recent discussions have been for the FDA warnings. I was put on it recently for atypical trigeminal neuralgia and noticed a simultaneous relief of my IC symptoms. It has been wonderful! My healthcare providers have never heard of Topiramate being used for IC so they think it is just a fluke and that it is a random occurrence. Some think it means I just never had IC in the first place and that what ever was bothering me went away. So, I want to know if anyone else has had relief with Topiramate (Topamax)? I can't find any documentation in the medical literature with which to prove my case to them.

    Salomeh
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    • #2
      I wish I could help... unfortunately, I tried Topamax but couldn't take it. It made me so dizzy that after a while my husband would not let me shower alone for fear I'd fall (because I walked into walls and fell several times around the house) and it made my hands and feet feel like they had constant, intense "pins and needles" tingling in them. I was only on it for a few days. However, it is possible it could help your IC - especially if part of your bladder pain is neuropathic in nature.
      ****
      Jen

      *Diagnosed with severe IC in 2004
      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

      **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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        • #3
          Thank you for replying. I had the pins and needles badly at first but my doctor warned me about this and told me it usually goes away and it did. I was kind of dizzy at first and unbalanced but that improved as well.

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            • #4
              I used to take Topamax for migraines, but I had to stop because I was having trouble speaking and getting holes in my memory.

              If you start having problems where it feels like your brain is stuck and you can't find the right words (Like saying "I'm going to ____ some cereal" and you just can't figure out that the word "eat" fits in the blank OR you start saying things like "I'm going to food some cereal" or "I'm going to mouth some cereal") then talk to your doctor ASAP.

              I don't want to scare you, but that's how it started for me and I let it go on way too long before I decided to get off of it.
              Medications and Supplements:
              BladderQ
              Pyridium
              D-Mannose powder
              Cranmax

              Lifestyle:
              Lacto-ovo-vegetarian and IC diet
              Meditation
              Positive mental attitude!

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