Hi Everyone,
I am having daily issues with jumpy vision. I mean my vision moves up and down side to side. If I look at a grid an hold the grid still in my hands I can see it moving. Has anyone with MAV experienced this 24/7? Also anything helped meds etc. I am currently taking 40mg Propranolol any higher gives me loose bowels.
Thanks,
Brookie x
Anyone?
That sounds like Oscillopsia… you might want to look into it. I had oscillopsia but I dont have MAV. When I would look at stationary object that would jump and down, move back and forth and sometimes “shimmy” like heat wave if that makes sense. It used to make me feel crazy.
malaikaz how are you doing??? did you ever end up getting fistula surgery??? what is the latest with you???
I get the exact visual symptoms that you both describe. They improved on 2 different meds (nortriptyline and lyrica) for me but unfortunatley I couldn’t tolerate those meds side effects the first time that I tried them. I tried them both a second time and this time, neither helped with the visuals- totally sucks huh???
Hi Sarah! I just posted under “It wasnt MAV”. Im doing GREAT!!! 
How about you? Any changes?
I’m not doing great unfortunatley. Still trying mav meds and getting nowhere. I saw 4 different surgeons and none would consider a plf because I didnt have hearing loss and also my fistula tests were negative. Did you have hearing loss or positive fistula tests?
To be honest I think that I did have a plf and that it healed because I no longer get dizzy when I plug my ear with my finger- but I believe I do have MAV which has partially responded to meds (which is why I think I have it) but not nearly enough to be a functional person again. The worst part is my balance which has gotten progressively worse over time- the rest of my symptoms have stayed the same.
Did you Dr. say anything about why you got worse with the mav meds that you tried? Did he say this is common if you have a fistula or scd? does this mean you will never be able to take meds like gabapentin again?
I know you had a thin SCD- could flying have “thinned” this or damaged it? I wonder if you have had that your whole life and that is incidental to the plf- like was it just the plf that was causing symptoms the whole time?
I have oscillopsia as part of MAV, and it does sound like that the way you described. Mine fluctuates, but tends to be there every day. Two things seem to be helping me, but I’m less than two months into treatment - addition of an SNRI has helped reduce the overall level, and my new migraine glasses seem to reduce the effect it has on my balance, nausea, etc. - even though they don’t reduce the actual movement itself, they seem to dull it down a bit.
— Begin quote from “Brookie”
Hi Everyone,
I am having daily issues with jumpy vision. I mean my vision moves up and down side to side. If I look at a grid an hold the grid still in my hands I can see it moving. Has anyone with MAV experienced this 24/7? Also anything helped meds etc. I am currently taking 40mg Propranolol any higher gives me loose bowels.
Thanks,
Brookie x
— End quote
Hi Brookie, See my post below x
— Begin quote from “Brookie”
Hi Everyone,
I am having daily issues with jumpy vision. I mean my vision moves up and down side to side. If I look at a grid an hold the grid still in my hands I can see it moving. Has anyone with MAV experienced this 24/7? Also anything helped meds etc. I am currently taking 40mg Propranolol any higher gives me loose bowels.
Thanks,
Brookie x
— End quote
Hi Brookie, i’m a bit late on this but wanted to say that this is EXACTLY what i have. I am on 30mg of propranolol and about to up to 40mg - this is apparenty the max dose for me, so then you have to sit tight at 40mg for 3 months to see if it will help. How long have you been at that dose? Also i’ve been told that it will be a combination of physiotherapy and medication which will stop this for us. Keep at the proprnaolol and try these exercises - but be prepared for VERY SLOW improvments. Put a sticky post it on a plain wall with a letter written in the middle. Stand an arms width away from the post it, and shake your head from side to side, keeping the letter in focus. Do this for up to 1minute or until you can’t bear it. Sit down and rest and wait for any dizziness to subside, then do it again but nodding your head up and down. Do this morning and before you go to bed everyday, and keep at the prop! x
X
Hi Everyone,
Thank you all so very much for your replies xx
Whosthatchick; thank you for your reply. It’s so nice to hear you can relate to me 
I have been changed from Propranolol 40mg to another beta blocker to see if I can take the higher dose?? I agree that my best tolerated dose of Prop was 40mg too. The VRT is interesting. Thanks for posting those instructions. I did VRT back when I had VN before the MAV & stopped due to headaches. I haven’t returned to it yet.
Did your Dr advise you to do the VRT or wait till the headaches stopped through meds first?
Brookie xx
Also whhat glasses did you buy?? xx
I was advised to do the VRT while i still felt unwell, but not when i felt awful - those days where i can barely walk from the vertigo. I’m fortunate enough not to get actual headaches, but i get awful vertigo, which is crippling and 24/7, and mild tension headaches xx
— Begin quote from “Brookie”
Also whhat glasses did you buy?? xx
— End quote
I bought the FL-41 tinted ones from Axon Optics. Pricey, but they have ended up being worth every penny for me. Not everyone will respond to them, but when I was considering them, I figured how much I had spent already in failed treatments and this was just another drop in the bucket. There are a few other companies that offer them too. Another is called Theraspecs.
Hi WTC & Dizzyforlife,
Thanks for the info about VRT xx
I am going to seriously look into the glasses thanks xx
Brookie, do you get this too - since our symptoms are so similar…
when i’ve been doing something strenuous, such as squats which i try to do every night as a form of physio… the whole floor turns to jelly, and each step i take i feel like the floor is rocking, i then also get heightened visual movement with every move i make, so if i was to bend down while looking at the mantlepiece, it looks like the mantelpiece is moving down at an angle with me? And i feel like the whole world moves with every moment…?
Hi WTC,
Thanks for asking me : )
No I don’t have things moving with me like that. But boy was the shimmering bad today! The whole day was a mirage!
Brookie xx