New here - glad I found you!

I found this forum a couple of weeks ago when I was Googling Topamax side-effects because I felt terrible and so brain-affected that I was at a loss as to what to do next. My gut was telling me (in more ways than one) that I was going up on my dose too quickly, but my neurologist did not think I would be so affected. When I found this group, I couldn’t believe there was a discussion forum where lots of people were experiencing side effects similar to mine and were saying titrate slowly. I called my neurologist and backed off on my dose until I felt ready to go up.

Now that I’ve had time to read more, I am even more thankful for this group. I have a similar story to many of you. I had my first pull-over to the side of the road, go to the ER attack when I got the swine flu in 2009. I had no idea what was wrong with me, but I couldn’t look anywhere but down without thinking I was going to pass out, and everything was fuzzy. I’ve had varying degrees of tinnitis, headaches, instability and dizziness off and on since then, and one really scary instance of confusional amnesia while on vacation. Finally, when I ended up in the hospital in October of last year to rule out a stroke, we started investigating a long list of possibilities. I did physical therapy for BPPV that had no effect. I got a new prescription for my eye glasses. I saw an eye muscle specialist. I had all kinds of blood tests. I had an EEG last week and am still waiting on the results, but it seems the most likely culprit for all of my symptoms is migraines.

I am slowly getting on to Topamax. I am on my third day at 25 mg. and am still adjusting. Last time I felt better in about 5 days. I am experimenting with the diet. I had no idea how many foods might contribute to migraines. The diet is a work in process. I was a vegetarian and am slowly introducing in some meat to get more variety of migraine safe foods.

I’m very motivated to sort this all out though. It has been a long 2 1/2 years and things aren’t improving. Now my driving is limited and that’s not working well with a job and three kids at home.

Anyway, I’m glad you guys are here. I am very encouraged by those success stories!

Mary Lee

Hi Mary Lee, welcome. Glad you found us. I still remember the relief of finding this site. It was a huge boost in reassurance -it wasn’t just me after all! As you’re finding out, it’s a massive learning curve. Elimination of this, that and the other is often the first step. I too used to be vegetarian and gradually started eating meat again for much the same reason as yourself. And everything is doubly hard when you have a job and a family to look after. But we’re here for you whenever you need a sympathetic ear or want advice or would simply like to share experiences. Good luck with the Topamax.


welcome, Mary lee,
Hope you read my post of yesterday about 99%. You sound about like I did, way last Dec. when I was diagnosied with MAV. Keep reading this forum. It will do you a world of good. It literally saved me from destruction. You are with friends here, we all care about YOU and how you progress. Don’t feel discouraged or alone. Husband is yelling at me to get in the car ( haha) so will check with you later. your NEW friend , Meredith Spinning Lady

Welcome Mary Lee!

I know how you feel; finding this site was a godsend for me. Answers to all my questions, no matter how small or silly I thought they might be. Tons and TONS of really good info so make sure you check the information vault, and read the stuff from the expert interviews that Scott did. Come to think of it, I still need to finish those, there are lots of them!

Main thing is: You are not alone. For me, that was huge.



Thank you for the welcomes. They brought tears to my addled brain. It is so nice to have “found my people” as my kids would say. My friends and family have been very supportive, but even I find it hard to believe all the symptoms I’ve had. I don’t know what I thought was going on. I was surely sobered by the initial list of things to rule-out when I finally went to the doctor with the full list. The initial shock is wearing off and from what I’ve read so far, it looks like I fit in well right here.

It also sounds like I need to be patient even though I wish for a quicker fix, so keep those success stories coming. I went straight to yours Meredith!

Switching my diet is something I didn’t think I’d do and I was glad to see someone else who has done it. My veggie diet was one big migraine no list – nuts, seeds, yogurt, dried fruit, cheese, avocado, bananas, fresh baked bread. Not to mention the chocolate and caffeine . . . I was reluctant to go back to eating meat, but the carnitas tacos the other night were actually pretty darn good.

Kathleen, I’m from California, too, Pacific Grove, near Monterey. Where are you?

I’m looking forward to reading more here and hearing more from everyone. Thanks!

Mary Lee

Mary Lee,

I’m up in Sonoma County! Hot day today whew Indian Summer for sure.

Chocolate is still hard for me to resist, and avocado altho I don’t think that one is a trigger for me. Bananas are for sure, and coffee. Bummer I love coffee! Oddly enough, I can have an espresso from time to time without any problems. Have read elsewhere that some people react badly to coffee and not espresso, and some to different types of coffees etc. Not migraine brain people, just those lucky normal brain peeps out there! But it kind of made sense to me. Also, I only get organic espresso at a local shop. Not advising that you try it yet tho you need to go thru the elimination process.

It’s interesting for me to read that you and a couple of others here have switched from being vegetarian back to being omnivores because of the diet. I did that on my own, a couple of years before the onset of my first chronic, year long episode, because I was sure I wasn’t getting enough protein. And guess what migraine brains need? More protein. The majority of my diet is roasted chicken and vegetables! :lol:


Welcome Mary Lee,

Hoping you find all that you need to put this behind you.

Scott :slight_smile:

Welcome, Mary Lee. We are all glad you found this forum as well. (Although it is always sad to me to hear stories of what new members have gone through.)

Anyway, I was a vegan until my dizziness hit. After I got “sick,” it was just too exhausting to try to plan menus around my veganism, my husband’s gluten-free diet and my child’s extremely picky list of foods. Also, I wanted to rule-out that a vitamin B12 deficiency (only found in animal products) may have caused neurologic symptoms.

I really miss my beans, lentils and nuts but will probably be adding them back in since nothing seems to be a trigger for me. (I feel rotten ALL the time, no matter what I eat…)