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A MyFibroTeam Member asked a question 💭
Reading, PA

Has anyone taken topamax?
I've been taking it for a few days n I'm not feeling very well.
I know it takes time to get use to meds but what symptoms aren't right n how long

September 16, 2016
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Answer Summary

Members shared mixed experiences with Topamax, which many were prescribed for chronic migraines, with some finding it helpful at the right... Read more

Members shared mixed experiences with Topamax, which many were prescribed for chronic migraines, with some finding it helpful at the right dose while others struggled with side effects like cognitive fog, mixed-up words, taste changes, and mood issues that made them stop the medication. Several members offered practical advice, including giving the medication at least two weeks to adjust, keeping a symptom diary, checking whether the name brand versus generic makes a difference, and staying in close contact with doctors to find the right dose or alternative treatments like Imitrex, Keppra, Verapamil, or Botox injections. A recurring theme was the frustration of trial-and-error in finding effective migraine management, the importance of listening to your body and advocating for yourself when side effects become intolerable, and the shared understanding that everyone reacts differently to medications.

A MyFibroTeam Member

I use topamax, 100mg at bedtime. It helps with my sleep and to curb my appetite. I have been told it causes issues if you drink diet soda (changes the taste) or smoke. I don't do either so it doesn't matter to me. It works for me, but I guess it depends on what you are taking it for.

September 18, 2016
A MyFibroTeam Member

I was put on Topamax to reduce the number of migraines I get per month. It has worked, but you have to find the right dose. I was dosed to high, and it made me tired and when I tried to speak the words came out mixed up. I am now on a low dose and it continues to lower the # of migraines I get. The only other thing I noticed is, when I do get a migraine it tends to be really bad and lasts for 2-3 days.

September 16, 2016
A MyFibroTeam Member

That's hard to answer because it's been years since I started taking it. I do remember that it made food taste funny and meat still does taste different. I was given it because I was having ocular migraines, migraines, muscle jerking and had stabbing sensations all over my body. It certainly helped all of these things so I didn't mind a few side effects. As with any new drug, give it a few days to see if your body will adjust and if it doesn't call your doctor to see if there is something else he can prescribe. We all react differently to different drugs. Listen to what your body tells you.

September 16, 2016
A MyFibroTeam Member

I am one of the ones who has chosen to take no medication at all for fibro as nothing in the last 6 yrs has worked I just zone out the pain wherever possible but it is one of the hardest things I have ever had to live with but there is always someone somewhere worse off*(((

September 19, 2016
A MyFibroTeam Member

I have friends that tolerate it well but I couldn't tolerate it.
I was dumb as a box of rocks. Couldn't spell or reason to save my life. Taste perversion, my leg would feel like a huge blood pressure cup was on it for about 10 mins then clear up. My balance was horrible and functioning became impossible.
Also tried verapamil, it gives me wicked migraines. Tried another calcium channel nlocker, same problem.
Each body is different, and we all react to treatment differently. If yhis doesn't work for you keep looking intil you find what does. Keppra works for me.
Good luck and big hug.

September 18, 2016

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