Hi folks,

First of all, I want to thank you all in advance for your wealth of personal experience and willingness to share on this amazing board. I feel so alone in my journey and just knowing there are others out there with similar experiences makes it a bit more bearable. Here is my story.

Mid-november I started experiencing throbbing/stabbing pain in my left temple area, that sometimes shoots across my forehead and down into the left side of my face. Because it started about a week after I had a bad cold, my doctor (and me) thought it was a sinus infection (based on a history of allergies etc--it sort of fit my past experiences with them other than the fact I had no congestion etc). Anyway, after 3 rounds of antibiotics and 4 different NSAID prescriptions which did NOTHING for the pain, we realized we weren't dealing with a sinus infection...they thought it might be something called 'temporal arteritis'...that got ruled out. Then referred to neuro. Saw her early Jan...had an enhanced CT, EEG, and am scheduled for an MRI this coming tuesday. In the meantime, she believes I have something called 'atypical TN'...I've read about it and get the general gist.

She started me on a prescription of topamax. I started taking 25 mg a day on January 25th, then my dosage increased to 50 mg a day this past Tuesday, Feb 1....wed seemed fine but life has been a torturous hell pretty much since then. Extreme dizzy spells, feel 'off', tingles etc...all of which i expected. The good news--for the first time in about 9 weeks, the severe head pain is actually gone for most of the day until it's close to dose time again.

So here's my question--has anyone else here taken this drug for this? and what has your experience been? Have you stuck out the side effects? Basically I know they are bad....but I am willing to deal with them as long as they eventually go away and the med keeps the pain away. I've heard they will subside once my body adjusts, it's just during the titration period etc.

Can anyone share? And again, thanks in advance...please post as much detail as possible about your experience...hearing other people's agony during topamax hell is somehow comforting to me!

Welcome, although I'm sorry you're here. I've taken Topamax twice, but I have eye problems that prevented me from staying on it so I can't give you any detail regarding that med. I have taken other meds and the side effects are really tough, but they do tend to level off once you adjust. If they don't, then thats an indication that you probably won't tolerate the med. How long it takes to adjust is an individual thing. Also, my experience has been that doctors try to titrate the meds too quickly which makes it even more difficult to adjust. Hopefully others with better experience with that med will offer more info. I just wanted to welcome you and send continued pain free wishes your way.

I have had TN for almost three years and I had surgery for it but am having pain again now so I am back on meds. I take 150 mg of Topamax a day which helps control the pain. The side effects are brutal in the beginning but I assure you your body will adjust over time. The one thing that doesn't ever seem to go away is the tingling in your hands and feet. It does lessen considerably but every now and then especially if I don't eat in the morning and I take my meds my hands tingle a lot! Also my one weakness is real Coca Cola and Topamax for some odd reason make all soda taste flat. It bums me out .
If it is helping your symptoms then keep taking it. Believe me I have been on a million different types of meds and have had brain surgery and still am dealing with meds. When you find one that works try and get through the side effects!! Hope this helps!

hi kittychick,

I am 22 and have trigeminal neuralgia. I just recently got the MVD surgery because the medicines that i tried were either horrible side affects or not relieving me of pain at all. Topamax was the worst side affects i felt from all the medicines. I could not handle the the numbness, fatigue, or dizziness so then they put me gabapentin which was the only medicine i could some what tolerate. I never grew into any of my medicines so I do not suggest just trying to hold it out, I would try to change it.

Hope this helps!