The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

Oscillopsia

Does anyone else have this?! I’ve got it so badly, every time i walk a step, the whole of my vision moves and jumps with it. If i jog on the spot, the room looks like it’s tipping and turning; books look like they’re flying off the shelves etc!
Is this normal for VM? I’m worried about this happening for a long time and my brain not adapting. It seems to be so much worse at 25mg of ami though…

Oscillopsia is often associated with bilateral vestibular loss/damage. I am assuming you have had the caloric tests done and you don’t have that which is why you have been diagnosed with MAV. One theory could be that maybe migraine is attacking both sides of your vestibular system. If you have been on 25mg ami for a while now and it isn’t improving then I would think maybe ami is not the right med for you or 25mg is too high. Try reducing back to 20mg and seeing how that feels.

— Begin quote from “Jem”

Oscillopsia is often associated with bilateral vestibular loss/damage. I am assuming you have had the caloric tests done and you don’t have that which is why you have been diagnosed with MAV. One theory could be that maybe migraine is attacking both sides of your vestibular system. If you have been on 25mg ami for a while now and it isn’t improving then I would think maybe ami is not the right med for you or 25mg is too high. Try reducing back to 20mg and seeing how that feels.

— End quote

hello Jem! yes i know oscillopsia is usually associated with vestibular loss, but my calorics were all good. I’ve just had a little look through the board and have seen quite a few people say this is a symptom of migraine which makes me feel slightly better. My vision has always pulsed with my pulse since i started ami… now patterns on the floor are swimming and every single movement i make makes my vision jutter. feel like i’m looking in stop-motion!
I’m going to go back down to 20mg tonight. 2 weeks at 25mg and no let-up… i’ll try going back up again in another week maybe :oops:

Just found this: (states that oscillopsia is a symptom of MAV)

Neuhauser et al. have required at least two episodes of at least moderately severe vertigo concurrent with migrainous features which can include headache, photophobia, phonophobia, or visual aura.2 Their definition of vestibular vertigo includes: 1] rotational vertigo 2] positional vertigo 3] dizziness with nausea and either oscillopsia or imbalance. Crevits proposed similar criteria which includes at least two attacks of vertigo accompanied by migraine headache or visual aura.3 However, there are no uniformly agreed upon definitions of migrainous vertigo, or even the terminology. In this review, we will refer to episodic vertigo spells that occur concurrently with other migraine features as “migrainous vertigo,” and episodic vertigo, which occurs in a patient with migraine, as “migraine-associated vertigo”. The application of the term, “migraine-associated vertigo,” does not require that the vertigo and headache occur simultaneously.

Yes I get this. Today I was sure the sink and toilet were on an angle!! and the kitchen worktops often move and don’t look straight. I didn’t realise there was a word for this, thanks whosthatchick!!

I agree, I think you may have misunderstood what I meant which is that usually oscillopsia is linked to a bilateral vestibular loss but because you have been diagnosed with MAV (and therefore I assumed and you have also confirmed your calorics were ok) then I was just making a sort of logical jump to suggest that the migraine activity in your case could be attacking both sides of your vestibular system as opposed to just one side and that could be why you are suffering badly with oscillopsia. I understand that MAV symptoms can mimic lots of other vestibular disorders so it is very likely this is also the case for oscillopsia.

I suffer from those same horrible jumping visual symptoms during the worst phases/relapses and initial attack. It makes moving around very difficult and you just feel like keeping your head completely still. For example, for me it feels like things are bouncing when I walk and then they continue bouncing and moving for a while once I stop. Based on my experience with this condition for nearly 4 years now, I believe that when you are feeling that way (which you still are) then the migraine activity is still too high for VRT to have any benefit and quite possibly may just confuse the brain more. I think there would only be any point in doing VRT exercises once this symptom has lessened significantly. It would be different if the oscillopsia were caused by a vestibular loss which was static and not ongoing because then the brain needs to compensate but if, as in our cases, the oscillopsia is caused by unstable migraine activity then I think that VRT does not help when you feel that bad and should only be done when things get more stable. It takes many many months for this symptom to lessen after a major attack but it does. The rest of the time I feel a milder version of it but things are a lot more bearable and the jumping visuals are way way less. I feel like I live teetering on the edge of my threshold most of the time but when the bad symptoms hit it really reminds you how bad it can be and how far you have come, which you sort of forget when you feel a bit better.

The changes can be so slow you don’t notice them. Basically though if there is vestibular damage you will compensate and if migraine is causing it then with the right meds, lifestyle and time this symptom will improve a lot…so either way a change is gonna come!! x

I have this too. In fact it’s probably my main symptom since my MAV has generally settled down a lot/become more bearable.

My oscillopsia is pulsatile, in that my vision bounces with my heart beat as well. So if I concentrate on something straight and horizontal, it bounces up and down really rapidly all the time, but it jumps much higher/lower each time my heart beats. I’m told this is part of MAV by my consultant. And it would seem to be migraine related as when I have a prodrome for a headache the bouncing gets much worse.

I’m also very visually sensitive, and find lots of environments like supermarket aisles make me off balance. I can’t tolerate things like sitting next to moving water, as this makes me feel really sick.

On the upside, over time I’ve got much better at ignoring the oscillopsia, in fact I barely notice it most days. My brain seems to be able to ignore it somehow. However, it is always there, as if I concentrate on a line I can see it happening.

That’s great to hear beechleef, and i agree with you regarding the pulsing with heart beat - how interesting that this is an mav symptom! I’m learning so much. It really is very disabling when i walk at the moment, making me feel even more off balance!

Jem, good we agree haha! The problem with typing eh! And yes, i have this when i walk too - big bounces. nightmare. Hope it will calm down with right dose of ami/ right med!

CHANGE WILL COME!! love that!! xx

WTC I am certain it will all calm down like you say once you find that right med at the right dose. Just take it as a sign that the migraine activity is still too high right now but it will get lower and you will start to feel a difference and hopefully soon! xx

— Begin quote from “Jem”

WTC I am certain it will all calm down like you say once you find that right med at the right dose. Just take it as a sign that the migraine activity is still too high right now but it will get lower and you will start to feel a difference and hopefully soon! xx

— End quote

Really love comment, thank you so much, it really means alot. And i believe you x :smiley:

I just re-read your original message at the start of the thread, and wanted to try to reassure you that it will settle. I used to go running and couldn’t look at the horizon because it was bouncing up and down so much every time I took a step. But I perserved with keeping active and taking medication and avoiding triggers where possible, and it’s loads better now. I also think - like I said earlier - that my brain has got better at ignoring it. Hope it will soon get much better for you too.

— Begin quote from “beechleaf”

I just re-read your original message at the start of the thread, and wanted to try to reassure you that it will settle. I used to go running and couldn’t look at the horizon because it was bouncing up and down so much every time I took a step. But I perserved with keeping active and taking medication and avoiding triggers where possible, and it’s loads better now. I also think - like I said earlier - that my brain has got better at ignoring it. Hope it will soon get much better for you too.

— End quote

HI Beechleaf, thank you for this. It’s so nice of you to take the time to tell me that. I really hope it does settle, it is just suddenly so much worse in the last week but that is good to know that this is a MAV symptom and not something more sinsiter. I was worried that maybe through having chronic dizziness i had started to ireparably damage my vestibular system. Pulsing vision when still and bouncing vision when walking is not fun! GREAT to hear you’re improving somewhat, really great news :smiley:

Hi there,

So back when this first started for me and I was undiagnosed, I was prescribed Lyrica for chronic pain. I too have the constantly pulsing vision- it looks like things in my vision constantly shake back and forth when i sit still. Lyrica actually made things stand completely still for me- however, at the time, I had no idea that this was lyrica helping the vertigo- i thought it was a coincidence and just that my brain was finally compensating. Anyway, I ended up going off of it because it was too sedating, and then things started shaking in my vision again. I also get the horizon bouncing when I walk- I don’t know if Lyrica helped with that- I never noticed it in the beginning I think bc I would have to stare at the ground to walk for balance. I have tried lyrica again now and it does nothing for my visual issues…ugh. But just know that the shaking vision thing CAN GO AWAY with the right med- it did for me- it was amazing to sit and talk to someone and have everything be still again- I didn’t even realize what an effect it had until it went away!

thanks, i’m glad it can go away

Hey, just wondering how your oscillopsia is doing now? Mine started 2 months ago, going a bit crazy. Thanks a lot!

Hi and welcome. It’s unlikely you’ll receive a reply from whosethatchick because younare responding to a very old post and she hasn’t posted here since 2014. However if you use the Search facility on this forum you will find more than 50 posts relating to Oscillopsia. Quite a wealth of information. As far as I’m aware not many current members seem to be experiencing it to any great degree at present or I’m sure they’d have mentioned it. Apparently it’s quite common amongst people with any form of neurological condition. Any symptom that affects vision can affect balance and be both very disturbing and incapacitating. Sorry to hear you are currently suffering with it. What diagnosis have you been given to cause this. What treatment options have you been offered. If you have a VM/MAV diagnosis I would presume you could hope that preventatives taken would eventually bring this under control along with any other persistent symptoms caused by MAV. Helen

1 Like

Hey Helen, thanks for your response. I thought maybe she might receive and email and say something, but I know it’s unlikely. I was actually diagnosed with Visual Snow Syndrome, but 3 months into it I developed mild oscillopsia. When I chew something hard, or walk, my vision vibrates slightly. If I run, everything bounces. I had full vestibular testing, but everything came back normal. I have had ocular migraines in the past, and suspected vestibular migraine, but I’m not sure. Just looking for some hope, I suppose. I have already trawled through the forum, more or less no positive stories. What can you do I guess? All the best

FYI an email was sent (I checked) … but yeah there comes a point when people move on from MAV in some cases … let’s hope so

I deal with it daily still. Chewing,walking etc, more of a vibration. I’m a runner, so if I’m going for a run, I put on sunglasses, seems to make it more bearable. If it hangs around for you for a bit like it’s doing me, you’ll learn to cope with it. Grantee I do have some ear damage so our cases are slightly different, but if you dont have any major damage shown on the caloric test, the is assume eventually with the right treatment path and time it could go away for you. As with all things MAV and vestibular though, ya gotta give it time

2 Likes

Hey! Thanks for your reply - yeah I have no ear damage at all. So it’s bizarre. How long have you had it?