Topamax update and dr in San Francisco area?

Specific Illnesses & Conditions VM/MAV
1

Hi all,

I’ve been on Topamax for 3 months now, in increasing doses, and the good news is, that thanks to the Topamax, overall things are better. The main things I notice are that the world is more level, my overall balance is much better, my tinnitis is decreased most days, and I am not having major dizzy spells (unless increasing my dose). I am on a pretty moderate dose, 62.5 mg.

The less happy news is that the neurologist was concerned that I feel so badly when I titrate up on my doses and I haven’t gotten to a place where I am ever symptom free (mostly neck and headaches and atypical facial pain). After three months of increasing my dose on the Topamax, the neurologist thinks this drug may not be the best drug for me. He said that he wasn’t sure how much my symptoms were due to migraine and how much they were due to the after-effects of having had a virus that affected my brain (perhaps the start of all of this nearly two years ago), which may or may not totally improve. He was also not comfortable letting me increase my driving range until I am more stable on a medication.

For now, he wants me to stay on my current dose of Topamax for at least a month, then maybe I’ll stay on Topamax, try Amitriptilline or maybe he’ll send me to a colleague in San Francisco who will start me on another drug that takes four months to work. My husband is wondering if these symptoms are after-effects of an virus and I have so much trouble adjusting to drugs, maybe the best thing to do would be to focus on overall good health and avoid all drugs altogether. Ugh, sometimes this is such a frustrating journey!

I am wondering if anyone else has used a specialist in the San Francisco area? Stanford would be closer to us than UCSF, but a good reference would be worth a lot!

I was really bummed last Tuesday when I saw the doc, since then I’ve decided I would have picked to stay on this dose another month if I’d been asked what I wanted, so I should just relax for now and enjoy the holidays.

Here’s wishing all my dizzy friends happy, healthy holidays!!

Mary Lee

2

I am not from the US but I have heard good things about Dr schankin and Dr goadsby from ucsf. Good luck

3

Why would you (or your dr.) want you to stop taking something that is obviously helping you??? It is normal to get increased symptoms when you go up on your dose- especially topamax- that one seems to create a lot of different side effects. I don’t think it is unusual that one drug wouldn’t help all of your symptoms- why not add something else to the topamax, instead of stopping it altogether? Your dr. sounds very confused to me…if I were you I would stay on the topamax and try and see that other person that you mentioned!

4

Thanks Nabeel! I googled the doctors you suggested and they look great, especially Dr. Goadsby.

I also agree with Sarah that it doesn’t make sense to go off of the Topamax when it’s already helping and people says the effects continue to get better for three months or more. I have continued to improve just not dealing with the issues of titration (and coincidentally being off work for a few weeks), so fingers crossed!

Mary Lee

5

Mary lee

Im based in singapore and suffer from permanent migraine aura aka visual snow syndrome along with MAV. Dr goadsby and Dr schankin are doing research into this illness as how our brains are different to others. If u do end up organizing a consultation with them then I request u to plZ contact me via pm so that I can get u to ask a couple of questions to them on my behalf. Its extremely difficult for me to get in touch with them from here. Will really appreciate this. Thanks

6

Nabeel. I’d be happy to. We’ll keep in touch.

7

Thanks Mary lee. Do u plan on seeing goadsby?