— Begin quote from “Barb”
Scott - Great additions to Elisha’s fantastic advice. Wish I’d had access to this stuff at the beginning of my ‘journey’ through the mav nightmare! Can it be put together in the Info Vault (?) as ‘Advice to Newbies’?
Beachgal
Glad you have found a good neuro. Regarding the VRT - is she aware you need to be stabilised on meds before this treatment? I wasn’t and the VRT made the vertigo much, much worse!
Scott - many docs/ENTs/physios suggest VRT to patients with mav without being aware that stablisation on meds is most important before starting treatment. Can that be added to the advice?
Barb
— End quote
Hi Barb,
Thanks again for you post. Yes, my Doc explained that she wanted to give me time on the med before VRT and explained that VRT will make vertigo worse. I started Verapamil 2 weeks ago and am still waiting for improvement. It’s been a very rough few weeks and not because of meds. I feel like I’m handling the Verapamil fairly well, my MAV symptoms have been rather acute for the past 3 weeks.
My plan is to make sure I feel pretty okay before my VRT appt in mid-Sept. If I don’t, I ain’t going. But I am going to give Verapamil a good try.
Also, just to add, Dr Adkins at Duke Neuro has had MAV, has gone through ENG/VNG and VRT. Going to a Dr that gets it and has empathy is a godsend.
Thank you Scott! I’m not sure what happened to my first “commandment” though 
I think it may have been deleted. I learned so so much from you and all your information on this website (along as other members) that I wanted to share some of my “knowledge” with others.
I’ll let you know when I think of that tenth!
Also, to Beachgal- I used to go to Dr. Adkins! I saw Dr. Kaylie and he referred me to her. I think she’a good Dr. but be very cautious as I think she has a tendency to over-medicate as she did to me and another board member, Dee. However, she is very knowledgeable. I would probably continue to see her if I did not live 2 hours from Duke.
Sorry Scott, ignore my remark about the first “commandment”. I’m trialing Topamax right now and I really have Topa brain. It’s not pretty! I have thought of the 10th one though and I’m going to add it right now.
Thank you so much for all your help and support!!!
— Begin quote from “elishat27”
Thank you Scott! I’m not sure what happened to my first “commandment” though I think it may have been deleted. I learned so so much from you and all your information on this website (along as other members) that I wanted to share some of my “knowledge” with others.
I’ll let you know when I think of that tenth!
Also, to Beachgal- I used to go to Dr. Adkins! I saw Dr. Kaylie and he referred me to her. I think she’a good Dr. but be very cautious as I think she has a tendency to over-medicate as she did to me and another board member, Dee. However, she is very knowledgeable. I would probably continue to see her if I did not live 2 hours from Duke.
— End quote
That might explain why I’m on 360mg of Verapamil. I have to admit I’m wondering if I’m feeling especially crappy because I’m in an acute MAV state or because of the Verapamil. Will probably put up a post and ask for opinions. I want to remain somewhat chipper on here and not be a complainer, but it’s freakin’ hard. I am so very appreciative of this forum and everyone’s insight.
Beachgirl-Complain away! That’s what we are here for! 360mgs of Verap is not too high. I was on the same dose. It did not help me at all but it has helped one or two people on here that I know of. It really does not help a whole lot of people from what I’ve seen. I’m not sure why it’s such a go to drug as it does not have a great track record. I don’t mean to sound negative I just don’t want you to spend too much time with it going too high on the dosage.
What is her next suggestion? Diamox is a fav of hers as is Topamax.
I really hope you find your “cure”! MAV is so tough. Good luck!