I really don't know what to do now

So, I decided to see a specialist about the MAV, both to confirm the diagnosis and make sure nothing else was going on. He was very confident that MAV was the main issue, which I certainly agree with, but there is some evidence of a peripheral issue that leaves me in limbo. While my various testing was generally unremarkable, one thing was noted across several days of testing - a consistent spontaneous horizontal jerk nystagmus. I wasn’t totally surprised about this, as I see things constantly vibrating or shaking ever so slightly. It didn’t change direction in any situation, vision blocked or unblocked, etc. other than some suppression with visual fixation on something. There is some suspicion about there being a partially but not fully compensated vestibular neuritis when looking at everything together. I did have an episode that was different from my normal MAV that is consistent with that as well.

He suggested doing a trial of VRT, but it’s up to me. I really don’t know what to do about it. Part of me wants to try, but then I also have read that it wouldn’t be of much help until the migraine is better under control. We have been trying to get it stable for so many years, that I kind of feel like putting it off for another unspecified amount of time might not be the best idea either. So my mind is running in circles, and I am stuck. VRT isn’t always pleasant and I don’t want to go through the “torture” of it if it won’t do anything.

Any stories, research articles you know of, etc. would be greatly helpful!


That’s a tough call I can see. Like you I had what I think was VN before the N turned into an M and am thinking about doing more to reduce visual vertigo being triggered so easily. I know very clearly for me that visual vertigo was off the charts when I was on no meds. Then I would go on Cipramil and gradually certain screens stopped messing with my head but not all.

Have a look at this previous post. There is an article in the literature about it. Would you like the full paper?


That would be great, thanks. I would love to read it. I have a chronic component of my dizziness that never changes in severity - it is always there, every day, though increases with increased movement (walking, cars, or otherwise) and decreases sitting still. Then on top, I have periods of rotational vertigo that come along with my other migraine aura symptoms, which are about as textbook an example of basilar type migraine as you can get. Those come along with increase in headache and nausea - basically what no one would mistake as a migraine. I think what keeps me thinking I have another issue and what the doctor was mentioning is that the jerk nystagmus was always consistently in the same direction and never changed from “attack” to “attack”, even being there in between. Then to argue against it is the otherwise unremarkable testing. I certainly don’t doubt my MAV diagnosis, I am just so up in the air about this other component and would hate to avoid something that may help me.

I guess part of my question boils down to the idea of the oculomotor aspect of migraine, and in those that have something like nystagmus, is it always there (and in the same severity) no matter how bad the associated dizziness is? Or does it come and go? And when it does come, is it always in the same direction or does it switch around? It seemed like when I was reading, that central causes seemed to create vertical, torsional, or direction changing nystagmus vs. a purely horizontal jerk type, but then migraine is such a great mimicker that who the heck knows? Gah! So complicated :shock:

Sorry, I forgot to add: I am and have been trialing meds for years. The latest one is somewhat effective (though not as much as I’m sure anyone would wish for), and has decreased the rotational vertigo, but has not put a dent in the underlying every day crap that started awhile ago. I know now that varying symptoms of migraine can improve at different rates, but still frustrating when the one thing I want gone more than anything else right now is the one thing that won’t go away.

what are the meds u have tried?

— Begin quote from “sarahd”

what are the meds u have tried?

— End quote

Lyrica, Gabapentin, Depakote, Topamax, Zonegran, Amitriptyline, Verapamil, Inderal, Toprol, Lexapro, Celebrex, CoQ10, Magnesium, B2, feverfew, Botox. I might be forgetting some.

Topamax and Zonegran worked pretty well, but were killing my kidneys. I wish I could go back on Topamax. Lexapro worked wonders for my anxiety, but made my headaches worse. Verapamil made a possibly small dent, not quite sure to be honest. Botox is working well on my migraine headaches and severe auras, but has not dented the daily dizziness. Feverfew is great in bursts for me, but loses effectiveness quickly. The rest either didn’t help or had side effects that were prohibitive. I am also on Cymbalta right now for anxiety, which it also works fabulously for, but doesn’t seem to be doing much of anything to the MAV. It has been a looooooong time worth of trials looking back. I’m looking to add Butterbur to the mix, but trying to change one thing at a time so I know what is doing what.

does your dr. have any other ideas about medications to try? has he or she had success with vrt and mav in the past?

Yeah, he is one of the “big guys” in the field, so he does have lots of experience. My options are pretty limited at this point medication-wise, so we are looking into some combo options if the butterbur doesn’t help. I am just so frustrated with the dizziness part of this whole thing.

could you try another seizure med- there are actually many- like keppra and lamotrigne- or another beta blocker or calcium channel blocker???

— Begin quote from “sarahd”

could you try another seizure med- there are actually many- like keppra and lamotrigne- or another beta blocker or calcium channel blocker???

— End quote

Possibly, other than the beta blockers as technically they are contraindicated in me anyway and I have already tried two. I’ll just have to wait and see since I will be adding butterbur as the next thing.

I’ll get that paper up soon. My modem died at home so haven’t been able to do much for a few days.

Dizzyforlife, I don’t have any knowledge or advice to contribute, but just wanted to say I’m sorry you’ve had such a long and difficult road and that I can understand why this is a hard decision for you.

I guess if you try the VRT and it doesn’t help, what you’ve lost is those days of “torture” while trying it, but what you’ve gained is resolving that lingering question in your mind, one way or another. Sometimes it’s worth it to go through something just to answer a nagging question that won’t leave you alone.

Good luck whatever you decide!


Hi Dizzy - it seems to me you’ve tried an awful lot of meds. I have had this for over a year and only trialled 2 meds - have you given them all a good go? Propranolol has made me much better than amitriptyline but still not good enough so i am attempting pizotifen over xmas . I was told to trial each med for 3-6 months to really gauge an effect x

WTC what symptoms did propanolol help with? are u staying on it? personally i think more than 2 months at a therapeutic dose on the med is sufficient, i think 6 months is overkill and probably a waste of time but there are others that will probably disagree with me.

It takes a long time to reach the optimum dose, sometimes up to 6 months - this is what i was told by the neuro-otologist at Queens Square london - who is registered as the best in the country apparently! I guess everyone is different.
Propranolol has helped with the pushing and pulling feeling i had when walking - i don’t really find it has helped with any other specifics but just overal general help.

yea i think people have different opinions its just hard though bc if u give each med 6 months and u need to go through several meds we are talking years here…if only we knew in a week or something grrrr

Have you tried Pizotifen? It took 3-6mths to see the difference for me.

no unfortunately we dont have it in the u.s. ugh. how are u doing on the pizotifen? how long have u been on it now?

I’d say 90% - I’ve been on it nearly 12 mths - took probably 3 mths to make a difference. First few days I was very tired but that wears off. It’s made a lot of difference with the off balance feeling - it’s not completely gone but goes into the background and I can do most of my normal day working and dealing with my kids. I don’t get the headaches mine has always been the constant off balance/moving vision/occasional waking up with vertigo for a few hrs.

wow mm that is wonderful!!! do u have difficulty actually walking and does it help with that? u should write a success story! what % were u before? do u get bad days and what % are those? glad to hear you are doing well!