Brain Tumor and Migraines - New Here

Hi All!

New Here! My Name is Kate and I am from CT. I have a bengin Brain Tumor. 2 doctors have told me that my daily headaches/migraines are not tied to the tumor. and 1 doctor said that he was 60% sure the headaches/migraines were tied to the tumor.

I have tried botox, beta blockers, calcuim blockers, amitriptyline, effexor, zanaflex.

I am currently on amitriptyline, and topamax.

Nothing has worked so far. (only on topamax for the past month)

My brain tumor is not supposed to grow. But where it is if it were to grow I would have eye problems or problems swollowing. I just recently starting having eye problems at night.

Does any experience any sore of wierd light problems from topamax at night with lights (not caused by headaches/migraines)?

I go back to the neurologist this week so yes I will be talking to him about this. 

Anyone else out there with a brain tumor?

Thanks for the reply Amby. They keep telling my that the tumor is not causing the headaches but none of the medicines are working. So I am not so sure if the doctors are right.

Katie

Dear kate2kate, I too have a brain tumor.... a malignant one. When it was first diagnosed, I did have migraines as well as eye problems both day and night. The eye problems included weird light problems as well as double vision. I had gone to the emergency room a few times with no result. It was when I finally seen my eye doctor that I found out that there was either a cist or tumor causing those problems. It turned out to be both. Needless to say, I had surgery, I underwent radiation treatment for 6 weeks then onto chemo pills for a year. I did rid myself of round 1, now I am into round 2. Which is on the other side of my brain. So what I believe is, yet I am not an expert, should the migraines continue as well as the eye problems...go see your eye doctor as well.

~Midnyght~

I too have a brain tumor, is yours a meningioma? My doctors have also said that my two tumors have nothing to do with my migrains. I have been on Topamax sience March and find it works the best so far. I have suffered most of my life with headaches and have tried most all of the new drugs and most have worked for a time. I keep hoping I will outgrow them. I will soon turn 65, and still waiting.   

 The best thing you can do is read and find out as much as you can about the kind of tumor you have. When I first found out I had these two tumors I thought my life was over, that was five years ago. Now I realize that there are all kinds of tumors and not all will kill you. I have a MRI once a year and enjoy each day hoping I don't get run over by a bus.