I can not say enough wonderful things about Dr. Adkins. She was so knowledgeable about MAV. She is patient and thorough. Most importantly she really understands MAV and treatments. She said this is a VERY manageable condition and though it make take a little time to find the right meds for me I WILL BE FIXED.
These are the meds she prescribed:
– Verpamil upped to 360 from 240 mg
– after 5 days start Zoloft starting at 50 mg going to 200 x per day over a period of 4 weeks
– then start Diamox starting at 125 mg daily then gradually increasing to 250 mg daily over a period of 4 weeks.
She is also concerned about my Thyroid number and wants me to see and Endocrinologist.
She said Diamox is a great drug for MAV but has to be started low. She also likes Verapamil which I like too bc so far it’s given me the most relief.
ANYONE who is desperate and feeling overwhelmed by MAV should definitely make an appt. with her. She’s highly respected in the Duke University Health System. However, she is very hard to get an appt. with. The only reason I got one so quickly was bc Dr. Kaylie at Duke gave me the referral. However, she had a PA that works under her who is also very good.
Of the numerous Drs I’ve seen she is by far the most knowledgeable about MAV; she treats it all the time. She said it’s becoming more and more common. Probably bc so many others were being misdiagnosed.
One more thing: any one else who has worried about MS as I have, she said MRIs are 99% accurate at detecting MS. So if you’ve had an MRI and it was clear don’t worry about MS!
Hey Scott,
No, she has me on an extremely slow dosing protocol.
Verpamil first for 5 days at 360, then 50 mgs of Zoloft for a week and then increasing by 50 mgs every week until I get to 200.
And then add the last med doing the same thing, increasing weekly. So basically we are talking from the beginning med to full does of all 3 meds 2 months. She’s also a HUGE advocate on lifestyle and vitamins B, D, Magnesium and CoQ10.
I’d probably bump up one med at a time so you know what’s working.
It may be that Zoloft and Verapamil alone are all that you need or Z may be a dud and you’ll do better on Diamox + V but it will be hard to know what’s what if all three are going on together. Or what if a higher dose of V alone with no other med knocks this out?
Anyway, that’s my take but if the doc says to do it the other way then go for it.
I completely agree with you! The verapamil has helped so much I’m thinking that plus a low dose of Zoloft may do the trick. Fingers crossed! I’d hate to be on all three. But worst case, they are all three pretty tolerable meds.
Thanks Scott! You’ve been so helpful through all this. Hopefully I can post a “success story” soon!
I edited my response above, I agree that I probably stated that too strongly, it just feels that way to me. csf pressure has been the key issue for me. (after being diagnosed with MAV, and many other balance type disorders over the last year.) mine was low csf, which mimics exactly the symptoms of high csf.
High csf is treatable with some of the same drugs used for MAV. (especially diamox) but also other drugs work to reduce csf. (Effexor, for example…probably why Effexor made me instantly worse with low csf, it was debilitating)
Low csf is treated with patches. Unfortunately, my patches are having trouble holding. But I can tell you when they insert more fluid in my spine…it is like a miracle instant cure…it has lasted for a month this time, but then suddenly not holding…dang, headed back to try patching again, and hope it holds. There are no drugs to treat low csf, just drinking caffeine and lots of fluids, and if I went the route of most MAV patients, I would surely get worse because all those drugs tend to reduce csf pressure. (Ironically, last spring I was told to quit caffeine, among other things, and I didn’t put it together, but looking back, I was worse after I quit caffeine.)
That’s what makes me think that there may be something to the csf pressure in MAV patients, and that is what the study at Duke is about…it is curing chronic headaches through regulation of csf pressure. I admit that I am in the early discovery phase of the correlation between csf pressure and chronic imbalance/brain sensitivities, but it has worked for me, and in an amazing 100% way…I just wish the patches would hold, not sure if my neck is so weakened that it can’t be easily patched for a long time. For most people the patches hold after the first try.
I don’t want to confuse people with this information. if you think this is not appropriate for this forum, please feel free to remove my comments from this post. I would never want to cause any harm…I understand the suffering…
