I am hoping for some advice from all of your wise personal experiences:)
I am pretty new to all this…I started showing symptoms of MAV this summer, and have been “on a boat” dizzy for 6 weeks (5 weeks continuously with fluctuations better/worse). In addition, I have new “pull to the right” disequilibrium that started last week as well that makes it really hard to walk when it hits (10-15 times a day). I think the biggest issue for me is the brain fog that accompanies it, and also the speech issues (I stutter or talk slow if I talk while upright, it goes away when I lie down).
I have done the elimination diet for 3 weeks, just started Magnesium 400 mg a couple days ago, and am about to start B-2 and Co-Q 10.
I have improved dramatically from the first two weeks of dizzy bed-bound-stupor, and had hoped that diet and lifestyle changes would get me through a lot of this. I was hoping to wait a few months to start meds, but with new symptoms starting last week (tingling/numbness right arms and leg) and new right sided pull that makes me fall, I think it’s time to start meds. I’d like to be able to drive, take care of my kids and start exercising (and enjoying life).
My new neuro actually knows about MAV, wooohoo! She is not 100% convinced between MAV and epilepsy like symptoms, and wants to start me on either Topamax or Lamictal. Her preference is Lamictal because I am already having tingling feelings and brain fog, and Topamax side effects can cause those, too. We discussed Lamictal risk of serious rash side effects, and will go slow. She said it can take 4 months to be effective (I did read a case report that showed good success with migraine and aura after a month though so fingers crossed)
I searched “lamictal” and read every post on here about it last night, including the drug sheet, the black box warnings, and the “migrainously yours blog” , etc. I saw a lot of discussions about *thinking *about trying it, but not many who were on it long term.
Is there any advice about personal experience/success with Lamictal? It seems very promising and fewer side effects (if I don’t get the potentially fatal rash or asceptic encephalitis!) I know everyone is individual.
Is it too soon to start meds? Should I give the diet and supplements another month? It just seems like meds are an inevitable part of this if I want to be functional again, and I should get the process started?
I have an appointment at a university in 10 days…do I keep that appointment (made a month ago before I found this new neurologist who finally knows whats going on), or just stick with my new neuro? Coincidentally my new neurologist trained at that University with the Dr. I am going to see.
Should I try to get into Mayo clinic (I almost feel like it’s not necessary now that I have Dr. who understands MAV)? I am currently on a wait list and my new GP says he can get me in sooner if I need to.
Thank you for any help/advice you can give. I am so happy to have a Dr. who doesn’t just think I’m crazy, and think I am ready for this next step, but am a little scared, too.