New here and was hoping for some help please. Thank you!
I was diagnosed with MAV and Meniere’s October, 2022. I am currently on Betahistine, Topiramate and birth control (my MAV seems to be hormonally driven most of the time). I tolerate Betahistine and the birth control just fine but not Topiramate. I was up to 100 mg/day and I had memory issues, terrible back pain, forgetting words, tingling in hands and feet, zombieness throughout the day, fatigue, confusion, eye pain, and double vision. I have since lowered the dose to 50 mg/day (just started that a couple of days ago). I’ve been taking Topiramate since June, 2023. I still have all of the side effects and I imagine it’ll take a while for those to abate. I don’t want these at all.
I plan to completely stop taking Topiramate once I can wean myself off correctly.
Can you please let me know what other medication has worked for you that I can discuss with my neurologist? Especially those folks that are medically sensitive like I am?
Thank you so much!
PS: BTW, the double vision is particularly bad! My neurologist told me (I have it in writing) that Topiramate was not causing the double vision. I plan on finding a new neurologist.
idk if you’re asking for a similar drug to topiramate, but there is a newer extended release version. you could also look at other anticonvulsants like valproate and lamictal
Sorry to hear your experience with Topiramate. I don’t think this is unique to you. I have heard similar side effects from other people as well, especially memory issues. All the medicines that we have for Vertiginous Migraine is off-label which means they are used to treat other conditions. For instance, my medicine is Nortriptyline (10 mg) used to treat depression (which I don’t have, but I have anxiety). It works for me, the side effect is that my resting heart rate is higher than before (still normal, but not optimal like it was in the past). I think propranolol is used for VM but also to lower blood pressure. You need to discuss options with your doctor. They are the ones who are supposed to guide us, but then we need to do a lot of research before accepting any medicine. We were diagnosed at the same time (Oct 2022). That month was tough for me as well. Good luck with finding the right medicine for you!
Leylo- Topirimate may not be the best drug for you. For me it’s been a life-saver, despite side effects – it’s the only drug I’ve tried that stops severe, daily vertigo. I’ve never taken more than 75 mg daily and, like you, have had to deal with significant cognitive issues. But after I titrating down to 50 mg I feel much better with fewer side effects. It might be worth talking to your doc about trying a lower dose. I’m hoping to stay on the drug long term to avoid another relapse – will talk to my neurologist about it at my next appointment.
I, too, have double vision, but it came on concurrent with a massive relapse of VM symptoms. I’m working with an optometrist who specializes in patients with neurological disorders, traumatic brain injuries, etc. He prescribed lenses with prisms and a migraine tint, which helps immensely. I’m also undergoing vision therapy to help my eyes/brain relearn to work together properly. I hope you can find some relief soon.
Thank you so much for your help. I will check these out. Hope you are feeling better!
I’ve never heard of the prism lenses and I luckily have an eye exam coming up. I will definitely ask about that.
Thank you for your information and I hope you’re doing well!
Thank you - I will look into these!