Health Organization for Pudendal Education

Has any heard of the use of Topimax/Topimate being used in place of Lyrica/Gabapentin for PNE?? I would appreciate hearing of your experiences of any knowledge you may have regarding this medication.

I've heard of people using it. As with all these drugs, it helps some people and not others. Unfortunately for most of us there is some trial and error involved in figuring out which drug helps the most.

Best,

Violet

In Nov. I was at my pain doc, and he started me on Cymbalta. He was thinking out loud and said, "we'll start with Cymbalta, and then try Topamax, but that's not FDA approved for your condition. However, it works real well, but let's try Cymbalta first." I just wanted to share what he said. I'm still on Cymbalta, and it has helped a bit with my leg burning, which is either myofacial pain or centralization, no can say for sure yet. It's not significant relief at this point, I've been on about 2 mos I think. My vaginal pain was reduced after my 2nd block, however, just in the last week I've had a return to all the lovely vaginal stinging and burning sensations, and an increase in left foot burning. So I'm not sure what caused that. The block could be wearing off, or this could be a flare (a heck of one!). You can see that I'm also taking 2400 mg of gabapentin, and that does help somewhat, but nothing really helps a lot.

Drugs are such an individual thing, as are the side effects. Hope you find something that helps.

Debbie

Hi Debbie,
Thank you so much for your reply. The last few weeks have been quite difficult with side effects worst than the usual when starting new meds which left myself and my family a little concerned. I'm usually fairly robust and prefer to live in a state of denial...LOL...but with this med, Topomax, I had no choice. My last nerve block has run out but we are waiting for a newly ordered pulse radio frequency machine for the hospital to arrive to complete the next block done. I have been on Cymbalta for several years. The Topamax was replacing Lyrica which caused weight gain but more seriously a sleep issue where I would fall to sleep mid activity, mid morning, eg. when on the computer causing me to drop my ipad. Lyrica replaced Gabapentin which caused signifcant cognitve processing issues, which was a major problem while I was working.

My GP rang through to my Pain Specialist yesterday when my side effects hadn't improved as she knows my tolerance levels very well also and explained I had been taken to hospital by ambulance over the weekend with a chronic pain flare up as the topamax wasn't providing any pain relief, it was if I could feel all of the nerve endings relating to pudendal neuralgia, this had been exacerbated by a 2 hr drive to stay with my family for a few days. My Specialist suggested that research was suggesting the combinating of Topamax & Gabapentin together may be successful and I've told him I am willing to trial any drugs available as this the only way we will learn what will and will not work for this condition. I dont have children at home to care for a partner that needs my attention, so this makes me a good canditate to be a human guinea pig. What I do have is very loyal pup who picks up on my good and bad days and behaves accordingly, family and friends who have begun to learn to skype and two amazing children who have become wonderful adults and offer their support as often as they can.
Thank you again for sharing your information it really helps so that we can put all the pieces of this jigsaw together to hopefully future generations.
Health & Happiness.
Narelle

Yes, I used it. The side effects are horrendous. When I started that medication, I was really another person. I am even tempered but I was noticeably more aggressive on it. Not good. I would loose my balance just standing.
It worked quite well for the pain for 2 months and very suddenly stopped working regardless of the dosage.
There is/was a website called "crazy drugs" having terrible side effects and Topamax was listed in it. I really want to caution you about it.
It also makes the food and for some reason diet sodas taste weird, It is why it is sometimes used off label as a diet medication. So the main advantage is that you loose weight while many other anti-convulsants make you gain weight.

I have to say Topamax is one of the ONLY drugs that has actually helped my pain......I have been on it, with gabapentin for almost 8 years, and when I try to decrease it, my pain sky-rockets. After having gone through the first two weeks of dose adjusting - (I felt dumber than a cow on it) I did ok. I am not a big poster on this forum, but I had to reply with this as I know, for me - this drug is my saviour. Everyone is different, and some people cannot tolerate the side effects. You also lose weight on this because you do lose your appetite, so - watch your diet.........Josie

Hi there,
can you please tell me how much Topamax you are currently taking per day?
i take 100 mg already for migraines. I get along great with this med!
thanks

Tigerlilly - so sorry, I have not been on this site for several months....I take 100 mg 3 X daily. If I try to reduce this my pain levels go sky high....