Iâve been dealing with a visual symptom of âshaky visionâ or âoscillopsia without nystagmusâ for the past 5 years. Iâve 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 wonât 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). Iâm 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.
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 âV5â 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 âhyper-excitedâ 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 didnât undergo any further tests like TMS or MRI to verify persistent migraine auraâs 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 arenât just dismissed with anxiety as the cause, and hopefully leads to a successful treatment. Anxiety and stress is definitely a component that exacerbates itâs 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.
Iâd 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)
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
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 Iâd had access to your ex article before!
Topamax definitely helped calm things down. Still see the âmoving objectsâ at times, esp when tired! However, no stress now just comes with the âterritoryâ!
Barb
Vestibular activation modulates V5 excitability. Which makes sense why we feel better when in movement or watching movementâŚthis is the Vestibular-Ocular Reflex doing its job.
Davie
Yes - the âmoving objectsâ symptom has now disappeared 90% of the time (since the beginning of this year) so itâs taken Topamax quite a while to fix and increasing to 125mg has also helped. As I said, it usually happens when Iâm tired or have been travelling a long time.
And recently Iâm 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 âhyper excitableâ visual cortex has calmed down!
Barb
Thatâs 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 itâs extremely slight? Iâm just trying to determine whether the symptom has diminished for you completely or itâs just abated to a low degree. For me, if Iâm relaxed and calm it abates but itâs 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).
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 âmovingâ, up/down, left/right. I always feel better when Iâm moving or watching movement. It has gotten slightly better in the months Iâve been in VRT, but certain triggers make it worse (being tired, menstrual cycle, the usual). I donât know how my ENT keeps telling me I donât have MAV. She keeps insisting itâs labyrinthitis, but Iâm 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!
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 Iâm 35 now), but this all began with the shifting vision. I did have a few months leading up to it where I just felt âoffâ 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 donât 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 âfullâ 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. Itâs 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 âHeal Your Headache: The 1-2-3 Programâ diet, I had a few episodes of extreme ârockingâ and/or âswayingâ 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. Itâs when Iâm 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? Itâs horrid, isnât it!? Itâs interesting that the articles you linked say itâs a brain problem. My ENT maintains to this day that itâs vestibular (I guess because of my positive calorics test).
Iâve 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!
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 Iâm 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. Weâll at least then will have a firmer diagnosis.
Davie,
Iâd 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
I have an appointment with a neuro-opthamologist on 10/9 for the same shaking/shifting vision when Iâm 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!
As promised, Iâm back to report how I made out at the neuro-opthamologist. Apparently, Iâm a case study! He was able to detect my shifting vision with one of his tools and said I have something called an âocular flutterâ. 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 donât 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 donât 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 heâs 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, Iâll be curious to see what your neuro-op thinks and if you get a similar diagnosis.
Thatâs too bad! Keep us posted if you get to go.
I forgot the articles! He did say it would normally be caused by neurological âdiseaseâ (a problem specifically with the cerebellum). He didnât mention anything related to the articles though. Thankfully my MRI was normal. He said the problems would show up there if I had one.
He didnât have any suggestions for me. He said he was frustrated that he couldnât 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 itâs rare. When he does see patients with this condition, itâs 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 âmightâ help, but there are no guarantees. He isnât big on medication (neither am I) so he said he wouldnât 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 ENTâS âuselessâ in this area of specialty.
Did you have any other symptoms to begin with?