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Shaky, Shifting Vision - Persistent Migraine Aura


#1

I’ve been dealing with a visual symptom of “shaky vision” or “oscillopsia without nystagmus” for the past 5 years. I’ve recently done some research and came across some very interesting articles about this rare sensation that I wanted to share with the forum. When I first began experiencing this, I was extremely anxious as a result of this aura and spiralled down into a depression due to the lack of answers from all the doctors I saw. I know this is the case with a few others on this forum and I want to help prevent this from happening to more people, as it was truly a terrifying experience.

For those who experience this symptom, we know that when we try and fixate on an object, it won’t stay still and our gaze is unstable. Its hard to focus on something that is at a distance. We feel better when watching movement or moving ourselves (something which sounds typical of MDDS). I’m no doctor but from my observations carefully reading the following two journal articles, it appears that this is a symptom of hyper-excitability of the visual cortex area V5 in the brain.

link.springer.com/article/10.100 … 003-0040-0

webmedcentral.com/article_view/3984

The article by Suzuki et al. (2004) measures the differences in brain blood flow/activity between a patient experiencing the oscillopsia without nystagmus compared to 6 other healthy individuals. The area of the brain in the Visual Cortex ‘V5’ for visual motion processing appears to light up for the patient when watching stationary dots, however did not for the other healthy individuals. Both the patient and healthy participants had both light up when watching moving dots. This demonstrates that this V5 area is “hyper-excited” due to being triggered by a migraine or dysfunction in the brain.

The second article by Jacome (2013) suggests that this oscillopsia is from a persistent migraine aura and the patient was treated successfully through Topiramate 50MG twice daily, which has proven to suppress excitability in other various studies. The patient unfortunately didn’t undergo any further tests like TMS or MRI to verify persistent migraine aura’s typical hyperactivity, however it seems that this is the likely cause of it due to the evidence of V5 hyperactivity found by Suzuki (2004).

My goal for this forum post is to raise awareness, so patients can share these to their neurologists or neuro-opthamologists and aren’t just dismissed with anxiety as the cause, and hopefully leads to a successful treatment. Anxiety and stress is definitely a component that exacerbates it’s severity as explained in Jacome (2013) , but the underlying condition most likely points to Persistent Aura causing an Oscillopsia without nystagmus if no infarction or lesions are evident.

I’d imagine the reason why this particular oscillopsia symptom is so rare, is because it probably occurs with the combination of BOTH vestibular migraine and PMA. Most people only have one (only vestibular migraine or normal migraine with PMA)

I hope this has been helpful,

David


#2

Thank you David, this is interesting


#3

when i sit still everything in my vision constantly moves around, i got some relief from nortriptyline and lyrica but briefly, makes me think its another symptom of this whole complex


#4

Davie
This was one of my first symptoms brought on my VRT. My anxiety was thro the roof - things moving up & down nonstop!
A year later neuro diagnosed migrainous vertigo - wish I’d had access to your ex article before!
Topamax definitely helped calm things down. Still see the ‘moving objects’ at times, esp when tired! However, no stress now just comes with the ‘territory’!
Barb


#5

Barb,

Do you have any times where the symptom completely goes away? Or do you always still have it to some degree even if it’s very slight?

Some further reading…

www1.imperial.ac.uk/departmentof … ibularlab/

Vestibular activation modulates V5 excitability. Which makes sense why we feel better when in movement or watching movement…this is the Vestibular-Ocular Reflex doing its job.


#6

Davie
Yes - the ‘moving objects’ symptom has now disappeared 90% of the time (since the beginning of this year) so it’s taken Topamax quite a while to fix and increasing to 125mg has also helped. As I said, it usually happens when I’m tired or have been travelling a long time.
And recently I’m able to walk in complete darkness without falling over! Since 2010 I would fall flat on my face if I walked into a dark room so my vestibular system has improved tremendously.

Thanks for the links - a bit technical for me but obviously my “hyper excitable” visual cortex has calmed down!
Barb


#7

— Begin quote from “Barb”

Davie
Yes - the ‘moving objects’ symptom has now disappeared 90% of the time (since the beginning of this year) so it’s taken Topamax quite a while to fix and increasing to 125mg has also helped. As I said, it usually happens when I’m tired or have been travelling a long time.
And recently I’m able to walk in complete darkness without falling over! Since 2010 I would fall flat on my face if I walked into a dark room so my vestibular system has improved tremendously.

Thanks for the links - a bit technical for me but obviously my “hyper excitable” visual cortex has calmed down!
Barb

— End quote

Hi Barb,

That’s great to hear. Sorry if this is a repetitive question, but I just want you to clarify… when your head is 100% completely still and fixated on an object in the distance in an empty room (perhaps while lying down) with NO MOVEMENT occurring in your vision at all, do you still see the shaky vision, even if it’s extremely slight? I’m just trying to determine whether the symptom has diminished for you completely or it’s just abated to a low degree. For me, if I’m relaxed and calm it abates but it’s always there even if to a very small degree. It gets worse with stress/anxiety.

Theoretically, any medication that is successful in modulating area V5 should fix this symptom. Alternatively it would make theoretical sense that using TMS or tDCS to suppress excitability in area V5 would also fix these symptoms (theres medical literature confirming this).


#8

Very interesting! The movement of objects when I try to focus on something at a distance has been my primary symptom since this all started over 6 months ago (along with ear pain, pressure, eye ache, head/sinus pain, etc). As a matter of fact, that is exactly how it began. One day I was going about my business as usual and when I sat down and was still, I noticed the chair across from me was “moving”, up/down, left/right. I always feel better when I’m moving or watching movement. It has gotten slightly better in the months I’ve been in VRT, but certain triggers make it worse (being tired, menstrual cycle, the usual). I don’t know how my ENT keeps telling me I don’t have MAV. She keeps insisting it’s labyrinthitis, but I’m not so sure. Thanks for posting the articles. It may be time for me to find a new doc and bring along these print outs!


#9

— Begin quote from “furmomof6”

Very interesting! The movement of objects when I try to focus on something at a distance has been my primary symptom since this all started over 6 months ago (along with ear pain, pressure, eye ache, head/sinus pain, etc). As a matter of fact, that is exactly how it began. One day I was going about my business as usual and when I sat down and was still, I noticed the chair across from me was “moving”, up/down, left/right. I always feel better when I’m moving or watching movement. It has gotten slightly better in the months I’ve been in VRT, but certain triggers make it worse (being tired, menstrual cycle, the usual). I don’t know how my ENT keeps telling me I don’t have MAV. She keeps insisting it’s labyrinthitis, but I’m not so sure. Thanks for posting the articles. It may be time for me to find a new doc and bring along these print outs!

— End quote

Definitely not Labs. Let us know how you go :slight_smile: Did you have any other symptoms to begin with?

FYI, the best doctor for this sort of thing would be a neuro-opthalmologist.

Dave


#10

— Begin quote from "Davie"

Definitely not Labs. Let us know how you go :slight_smile: Did you have any other symptoms to begin with?

FYI, the best doctor for this sort of thing would be a neuro-opthalmologist.

Dave

— End quote

Hi Dave,
I have a history of positional vertigo (maybe a handful over the years) and also migraine with the actual headache (again, just a handful in my life and I’m 35 now), but this all began with the shifting vision. I did have a few months leading up to it where I just felt “off” and came down with a sinus infection right around the same time it started, so my doctor keeps saying she thinks a virus caused it from my sinuses, but I don’t think so. Along with the shifting, my right ear really hurt a lot and felt full almost all the time (this has since all but diminished, unless a storm is coming then I get “full” again). Bright lights bothered me but not so much now and loud noises bother me a bit, along with a new sensitivity to chemical smells!! I did test with a 28% weakness of the right ear with the calorics test (not sure if that would rule out MAV??), but an MRI and other testing, including extensive blood work was all normal. For the most part, the shifting has been my main, constant symptom to this day, but I have also had the ear pain/pressure, tons of sinus and head pressure (not as bad anymore), and a strange pulling sensation on the right side of my head. It’s definitely worse during storms and my time of the month. Also, I feel worse in the dark and with my eyes closed. I used to feel like I was moving all around when I would lay down and close my eyes at night, but that has gotten better. About 2 weeks ago, after a bout of starting to feel a bit better on the Heal Your Headache diet, I had a few episodes of extreme “rocking” and/or “swaying” of the world, and I mean extreme! (This was during my menstrual cycle.) From the start I have always felt better in motion and that holds true to this day. I feel pretty much normal in cars and walking around my house. It’s when I’m still that it kills me! I feel better watching movement on TV (though too much movement like a commercial with roller coasters or something like that, makes me a bit queasy!). I truly feel that VRT has helped tremendously and possibly the Heal Your Headache diet. I started feeling better when I first started it, but then I got hit with that weird rocking/swaying that was more intense than anything I had ever experienced, so I had wondered if the diet was not helping. (Sorry if this is more info than you were asking for, lol)

Did you have any other symptoms too, or just the shifting? It’s horrid, isn’t it!? It’s interesting that the articles you linked say it’s a brain problem. My ENT maintains to this day that it’s vestibular (I guess because of my positive calorics test).

I’ve only been to an ENT but keep hearing about the neuro-otologists. I will have to look into that as I know now for sure that my current ENT is not getting me anywhere!

Thanks!

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#11

— Begin quote from “furmomof6”

— Begin quote from “Davie”

Definitely not Labs. Let us know how you go :slight_smile: Did you have any other symptoms to begin with?

FYI, the best doctor for this sort of thing would be a neuro-opthalmologist.

Dave

— End quote

Hi Dave,
I have a history of positional vertigo (maybe a handful over the years) and also migraine with the actual headache (again, just a handful in my life and I’m 35 now), but this all began with the shifting vision. I did have a few months leading up to it where I just felt “off” and came down with a sinus infection right around the same time it started, so my doctor keeps saying she thinks a virus caused it from my sinuses, but I don’t think so. Along with the shifting, my right ear really hurt a lot and felt full almost all the time (this has since all but diminished, unless a storm is coming then I get “full” again). Bright lights bothered me but not so much now and loud noises bother me a bit, along with a new sensitivity to chemical smells!! I did test with a 28% weakness of the right ear with the calorics test (not sure if that would rule out MAV??), but an MRI and other testing, including extensive blood work was all normal. For the most part, the shifting has been my main, constant symptom to this day, but I have also had the ear pain/pressure, tons of sinus and head pressure (not as bad anymore), and a strange pulling sensation on the right side of my head. It’s definitely worse during storms and my time of the month. Also, I feel worse in the dark and with my eyes closed. I used to feel like I was moving all around when I would lay down and close my eyes at night, but that has gotten better. About 2 weeks ago, after a bout of starting to feel a bit better on the Heal Your Headache diet, I had a few episodes of extreme “rocking” and/or “swaying” of the world, and I mean extreme! (This was during my menstrual cycle.) From the start I have always felt better in motion and that holds true to this day. I feel pretty much normal in cars and walking around my house. It’s when I’m still that it kills me! I feel better watching movement on TV (though too much movement like a commercial with roller coasters or something like that, makes me a bit queasy!). I truly feel that VRT has helped tremendously and possibly the Heal Your Headache diet. I started feeling better when I first started it, but then I got hit with that weird rocking/swaying that was more intense than anything I had ever experienced, so I had wondered if the diet was not helping. (Sorry if this is more info than you were asking for, lol)

Did you have any other symptoms too, or just the shifting? It’s horrid, isn’t it!? It’s interesting that the articles you linked say it’s a brain problem. My ENT maintains to this day that it’s vestibular (I guess because of my positive calorics test).

I’ve only been to an ENT but keep hearing about the neuro-otologists. I will have to look into that as I know now for sure that my current ENT is not getting me anywhere!

Thanks!

— End quote

Hey, I originally had that rocking for about a week or two after a holiday where I stayed in a high rise hotel. The elevator definitely bothered me and I felt all disoriented afterwards. The rocking then subsided and I noticed the shaky vision soon after. I originally thought it was MDDS, but now I’m leaning towards MAV.

'm really keen to see a Neuro-opthalmologist just to have some some similar tests done to these medical papers to verify whether we have a hyper excitable visual cortex/Cortical Spreading Depression. We’ll at least then will have a firmer diagnosis.


#12

Davie,
I’d be very interested in hearing the outcome of your visit on this topic, with the neuro-opthalmologist if you could post afterwards.
Thank you,
Brookie


#13

I have an appointment with a neuro-opthamologist on 10/9 for the same shaking/shifting vision when I’m not moving, as Dave described. I will certainly post back what I find out afterwards. I wish I could see him sooner, but oh well. More waiting!


#14

Good luck mate,

I’ve been doing quite well since Zoloft keeps the anxiety under control.

It is such a strange problem! I really hope one day we can fix this dysfunction…but thank god for anti-depressants in the mean time.

I will post back after my appointment.


#15

Thanks furmomof6 and Davie, looking forward to hearing from you both


#16

As promised, I’m back to report how I made out at the neuro-opthamologist. Apparently, I’m a case study! He was able to detect my shifting vision with one of his tools and said I have something called an “ocular flutter”. This is different and, according to him, unrelated to my vertigo. This shifting vision has been my primary symptom since this all started back in January. Anyway, there are two main causes of ocular flutter. One is neurological disease, which he says I don’t have since my MRI was normal (it would have shown up on the scan). The other cause is heavy metal toxicity or toxicity from medications. I don’t take medications and my blood work for heavy metals came back normal. (Although my mercury test was inconclusive so he wants me to follow up with that). He said he’s stumped as to why I have this problem and is going to consult with his group of neuro-op professionals to see if anyone else has any theories. In the meantime, just as a shot in the dark, he wants me to give up wheat and any foods containing GMO just to see if it helps.

Davie, I’ll be curious to see what your neuro-op thinks and if you get a similar diagnosis.


#17

Hi there,

Unfortunately I wasn’t able to see the neuro-opthalmologist due to work commitments.

Please keep us updated! Did you show him the articles?


#18

— Begin quote from “Davie”

Hi there,

Unfortunately I wasn’t able to see the neuro-opthalmologist due to work commitments.

Please keep us updated! Did you show him the articles?

— End quote

That’s too bad! Keep us posted if you get to go.

I forgot the articles! He did say it would normally be caused by neurological “disease” (a problem specifically with the cerebellum). He didn’t mention anything related to the articles though. Thankfully my MRI was normal. He said the problems would show up there if I had one.


#19

— Begin quote from “furmomof6”

— Begin quote from “Davie”

Hi there,

Unfortunately I wasn’t able to see the neuro-opthalmologist due to work commitments.

Please keep us updated! Did you show him the articles?

— End quote

That’s too bad! Keep us posted if you get to go.

I forgot the articles! He did say it would normally be caused by neurological “disease” (a problem specifically with the cerebellum). He didn’t mention anything related to the articles though. Thankfully my MRI was normal. He said the problems would show up there if I had one.

— End quote

Interesting. Keep me updated on what he suggests.

Had he seen patients with the same thing before?

FYI found an interesting article: archneur.jamanetwork.com/article … eid=795555


#20

— Begin quote from “Davie”

— Begin quote from “furmomof6”

— Begin quote from “Davie”

Interesting. Keep me updated on what he suggests.

Had he seen patients with the same thing before?

FYI found an interesting article: archneur.jamanetwork.com/article … eid=795555

— End quote

— End quote

— End quote

He didn’t have any suggestions for me. He said he was frustrated that he couldn’t help and would pose my situation to a group of specialists he confers with to see if they have any ideas as to why this happened or how to help. He said he has seen other patients with this problem, but that it’s rare. When he does see patients with this condition, it’s always caused by either neurological disease or heavy metal toxicity (neither of which I have).

He did say there are several different medications to try that “might” help, but there are no guarantees. He isn’t big on medication (neither am I) so he said he wouldn’t even suggest putting me on any as it would be a lengthy trial and error of all different meds and dosages with no certainty that it would even help.

Also, I figured I would mention that he does not believe I ever had LABS or MAV, just this ocular flutter with positional vertigo (not the loose crystals kind). According to him, the two conditions are unrelated. He did say for anyone with a vestibular problem, they should see a neuro-otologist. He called ENT’S “useless” in this area of specialty.

The article won’t open for me.