Does Anyone Now Or Have You Ever Taken Zonisimide? What Do/did You Think? Did It Help? | MyEpilepsyTeam

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Does Anyone Now Or Have You Ever Taken Zonisimide? What Do/did You Think? Did It Help?
A MyEpilepsyTeam Member asked a question 💭

I've been on it for years and my seizures keep getting worse. Now I'm having multiple forms of seizures instead of just tonic clinic like I had originally. And Dr keeps upping my dosage instead of switching meds even though I've requested it repeatedly. I sought out a different Dr and the new one kept me on same med (zonisimide) and dosages and seizures keep getting more frequent and worse and are now coming in clusters that sometimes last for a week!. Only thing nee Dr did was add Nayzilam… read more

posted March 25, 2023 (edited)
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A MyEpilepsyTeam Member

Thank you for the hug I'm a firm believer.

posted March 25, 2023
A MyEpilepsyTeam Member

Thank you...I'm always praying for it.

posted March 25, 2023
A MyEpilepsyTeam Member

I've been on Dilantin (D/C long term usage damage); Topamax / Topiramate (D/C developed kidney stones); Neurontin (D/C side effects); Lamictal (D/C rash that could turn dangerous); Tegretol (D/C side effects); Diamox / Acetazolamide (D/C did not have catamenial epilepsy). I did miss a dose of Trileptal and ended up in hospital. Seizures wouldn't stop. It's a nightmare trying to figure out right med or combo of meds that interact well and deal with side effects. My epilepsy started as grand mal but now is focal impaired awareness, had a few drop seizures and wandered off once. So, yes it's difficult trying to find the right med that'll control what type of sz and work. Now, I'm on Oxcarbazepine (Trileptal), Briviact, XCopri (Cenobamate), titrating down Lacosamide (Vimpat) to eliminate.

posted March 25, 2023
A MyEpilepsyTeam Member

I don't live in that area but second opinions are perfectly legal and normal. But be aware that Drs belong to fellowships meaning they share patients information without their knowledge. And although it brakes hippa laws is there any legal proof. See word of mouth and one Dr to another whom won't say if they've said anything. Nobody knows. Why I'm glad I have the Drs I have. They know what has gone on too me. I'm shouldn't say too much else. But I'm praying for you. And keep telling the same thing don't deviate. They will hear you.

posted March 25, 2023 (edited)
A MyEpilepsyTeam Member

Keep hope everything will b fine 😇

posted March 25, 2023

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