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Chiari Malformation type 1

Brain & Nervous System | Last Active: Apr 6, 2023 | Replies (146)

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@awesomesauce17

Hi, my name is Leanne Matthews. I am from Wichita Kansas. I just got the diagnosis of Chiari malformation type 1 2 weeks ago. I have thoroughly researched my disease and I've come to the conclusion that I was born with it and started displaying symptoms when I was around 12 or 13 years old. My symptoms have progressively gotten worse over the Year and have really come to a head in the last 9 weeks. Just prior to my diagnosis I spent the weekend in the emergency room with symptoms of heart attack and stroke and the onset of a really bad stutter and migraines all in one weekend. I have my first appointment with my neurosurgeon on the 28th of this month. I have gotten signed up with the Mayo Clinic and have access to a 24-hour nurse. So as of now I guess my only question is aside from the Topamax that my doctor is prescribing me at bedtime every night is there any suggestions you can offer me as to what I can do to help ease these migraines?

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Replies to "Hi, my name is Leanne Matthews. I am from Wichita Kansas. I just got the diagnosis..."

Hi Leanne (@awesomesauce17), welcome to Connect. I moved your message to the active Chiari Malformation type 1 discussion group to connect you with other members discussing this condition. I invite you to read through the posts here: https://connect.mayoclinic.org/discussion/chiari-malformation-type-1-20782d/

Leanne, how long have you been taking Topamax (topiramate)? Did you doctor say it would begin to help with the headaches eventually?

I just started taking Topamax 2 weeks ago and it does appear to be helping with the migraines. I just found out yesterday that I could have started taking two 25 mg tablets a day a week ago. But apparently I did not read the label correctly when I got the prescription filled so I just started taking the medication twice a day yesterday.