Akinetopsia

Just got back from my last VRT for the time being. I mentioned my annoying symptom of start/stop type vision when watching movement - particularly on TVs. She told me that isn’t something she thinks VRT can help with and go and see a neuro ophthalmologist. Then gave me a contact.

Got me thinking, and slightly worried. So as I do… googled this to see what I can come up with so to discuss with neuro when next we meet. Akinetopsia! This fits me exactly. It’s not as severe as others but describes what I see really well.

When watching panning shots or movement, it stops and starts as if I’m seeing every frame. It doesn’t happen in real 3D life - or maybe not as noticeable.

Now, what could cause that? Brain lesions! And I have many from ‘migraine’ apparently. I wonder whether I have a brain lesion in the V5 portion of the brain.

Just look at how quickly I jump to conclusions and self diagnose, BUT this is something worth investigating. And if it is lesions, then I have a big case to continue on long term preventative medication I think!

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I wouldn’t panic (though all forms of visual vertigo are annoying and worrisome)

I don’t think white spots on brain have been shown to affect anything? Perhaps they are just benign?

It’s so easy to Google and get anxious about something.

Sounds more like you need to consider a vestibular suppressant to dampen your VOR potentially? (for the time being).

Are you seeing an oto-neurologist?

I got all kinds of visual vertigo at one point but was almost completely eliminated by Amitriptyline.

At its worse I would experience my entire view swing from side to side.

I would have problems like odd artifacts when looking at pictures of trees with lots of complex vertical shapes.

I couldn’t look at screens or watch television.

I would actually feel dull muscular pain in my eye.

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White spots are so mysterious and under researched. I wonder what the next couple of decades will reveal?

Yes I’m seeing a neurologist/otoneurologist. I emailed him a couple of weeks ago with this symptom and he replied with visual dizziness that can take a while to go. But still… I don’t hear about /read about too many other people with this variety of symptom.

Yep I’ve had all that too @turnitaround, and can remember the painful eyes - even to move them. Not fun. I’m going to enquire about Ami but I know you can’t take that with pizo and pizo has helped a lot. My eyes have been a persistent problem. The vestibular systems and the eyes are best buddies aren’t they.

Yep I’ll give google a rest but it was an interesting find today. It’s just incredibly annoying!

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It definitely is that !!

Got my brain whirling that one Bee. Never heard of it but then thought, ah, it’s big sister/little brother to Palinopsia and … my take for all it’s worth … try this one …

The akinetopsia often occurs with visual trailing (palinopsia ), with afterimages being left at each frame of the motion. It is caused by prescription drugs, hallucinogen persisting perception disorder (HPPD), and persistent aura without infarction.

Words jump out at me there, “Prescription drugs” … could it be the Pizotifen causing it I wonder? Can you plot a timeline?

Another word, somewhere, I liked was ‘perception’. Could well be your akinetopsia is just part of your brain’s very individual reaction to VM. We see what the brain perceives and it’s currently under too much pressure to function totally correctly.

after very quick scan read somewhere in the above antidepressants are listed as possible culprits … and hey hoo Pizotifen is 50% tricyclics AD. So there’s a question to be asked.

How I cured my Palinopsia

Btw to say I am impressed with the observational skills and abilities of your VRT body would be understatement of the year. It seems in some parts of the world they really do seem to know their stuff.

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Thanks for the research Helen. We all have learned something new today.

Well I guess I just play the waiting game and see what time does. Interesting about anti depressants. I’m not sure the equivalent dosage for pizotifen to be regarded as a high dose. I’m on 1.5mg.

Yes my VRT is pretty good. I’ve got her mobile number to text at anytime. My next BPPV attack no doubt.

I need to get off Google - it really isn’t good for me, but I just can’t help but feel I need to know more about my symptoms. Haha - just like every person with health anxiety says.

Will keep Akinetopsia as a point of discussion for my next appointment.

No I doubt it is but as a MAVer and bearing in mind our hypersensitivity I would totally discount that from relevancy.

Found it. I knew it. I knew there was one. @Belindy

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Ahhh yes. Now you mention it, I think @LucyLabrador also combines nort with pizo.

I will look into it. I don’t want Serotonin syndrome is all.

So much to consider!! Thanks

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Sometimes too much knowledge is a dangerous thing. Ignorance can on occasions be bliss. From what I have read occurrences of Serotonin syndrome are much more a possibility rather than a probability it seems. I will be interested to hear what your specialist has to say on Akinetopsia. Can you pinpoint when it first arrived? Could it be drug linked by timing?

I cannot imagine it’s Akinetopsia you have. If you haven’t had a trauma, stroke etc why would you and why now? Two conditions one on top of the other? You are young and fit, do why such misfortune all at once. Much more likely it’s just part of your MAV visual stuff and just mimics Akinetopsia.

Amitriptyline for MAV is usually taken up to 50mg (and normally 30mg). It is more responsible to take it at the minimum helpful dose as you don’t want to alter your neuro chemistry more than you need. Some people take higher levels for MAV but that’s a personal decision.

It used to be taken for depression at 150mg to 250mg so I imagine there is quite a lot of headroom.

That doesn’t mean you will be immune from additional side effects though like shaky leg.

You could also consider switching instead of adding if you decide you need more vestibular suppression than your current drug provides.

Hi Belindy
I had visual disturbance which felt like my eyes were tripping over themselves. I can’t explain it very well and, in an effort to understand me, my neurologist described something very much like you describe.
I’ve been on Ami 20mg for about 3 weeks and my visual disturbances have stopped.
Hope you find a solution.

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I have this when I’m tired or when looking at screens too long. It’s a sign I’m sending myself into aura and need to be mindful. It’s happened for me for years with and without MAV drugs. I consider it part of visual vertigo or just aura. Much of my stuff is visual. Learning to see the early signs of something bigger has helped me a lot in slowing down and taking better care when I need to. I was also sent to a neuro-ophthalmologist. He was worse than useless.

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Hi, I have just spotted your post! I too have akinetopsia I have had it developing for around 20 year and it’s not connected to medication. I have be trying to find someone with it.
Has yours resolved yet? I know some meds, migraine or seizures can bring it on short term.

Oh hi, really you have this symptom? Can you describe what it’s like for you?

It never leaves me completely but gets worse every now and then. Like 4 days ago watching tv, horrendous stop/start but this morning, a little better.

My neuro says ‘central processing problem’. Well that’s clear. But whyyyy??

Hi. It’s so hard to explain but basically every movement, be it my head moving or things around me moving there is a gap between images plus the new image is placed on top of the old image rather than instantly replacing it.
So if I was watching someone’s face, their mouth would disappear as they talked and the areas of face that were moving slightly would “smudge” as it moved. When the face becomes still again I see it clearly.
A strange thing is that if im watching TV the amount of “jump” must also be affected by how many frames the program has, so some programs are much more jumpy than others. Have you noticed this?
I first noticed mine starting 20 year ago, it started very subtly. I have no idea why I have it. I have other visual processing problems too, things like not being able to see objects that are around me.
A MRI scan did show multiple lesions on my white matter. I had a lumber puncture to check for MS but it came back clear.
I have been given a diagnosis of FND 3 year ago as I have neurological symptoms but my neurologist does not think my vision issues is connected to it!
It must be very rare as I have searched for 2 year to find someone else with it full time, your post came up in a google search, so I joined this group to be able to talk to you!
Also If a car drives infront of me I see a gap between images. If things move very fast they become invisible to me.
I was worried it might be PCA (visual Alzheimer’s) but a memory test indicated my brain was working well.
My neurologist has no idea why it’s happening. At my last visit he did mention that it might be connected to my dyslexia :woman_shrugging:.

How does yours impact your life??
It’s a relief to be able to talk to someone who actually understands what it’s like to live with this!

Yes I absolutely notice the difference between programs. Some are really bad!!

So did it start with the tv for you? And gradually got worse over 20 years to include everyday life?

You have me worried now that this will get worse!!! Is it constant or comes and goes?

My neurologist says it’s visual vertigo / central processing issue. I hope it isn’t akinetopsia, but sure sounds like it.

Have you got VM too?.

This from Helen @Onandon03 is what I settled with. Such reassuring words of wisdom.

You’ve got me a little panicked though @Bemahan i must admit. Can you describe the progression please. I’m worried because this has never gone away

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Hi, I’m 61 now, and I know I have had slight issues with my vision which I realise is coming from me brain, not my eyes. I have very good vision and pass all my normal eye exams.
Around 20 year ago I thought I was seeing the refresh on our computer. Then a few year later I noticed a ping pong ball looked really stroby but I thought it was my imagination.
It must be two year ago I noticed it while watching TV and wondered why no one else in my family was complaining about it!!
Now I have a lot of vision issues and a pretty much permanent headache with occasional migraines. I’m on 30mg amitriptyline for them but when my symptoms started I was on no medication at all.
I have researched and researched, joined one group after another trying to get answers.
I only have a diagnosis of FND, which is a condition that mimics MS, Parkinson’s and epilepsy. But have found no one with the same visual problems as me on the FND Facebook pages. I have no other diagnosis, other than dyslexia which came after my neurophysiological test to check for cognitive decline but do get vertigo every now and again.
Hopefully yours will start to become less noticeable. And yes I have it all the time, exactly the same from morning to night. Sometimes I watch TV using my peripheral vision as it’s so tiring trying to follow the movements.
I try to explain it by saying while watching a movie, I can easily read the subtitles but I can’t see the fast movement in a action scene.

You should get this formally diagnosed and join a research team. People would love to study your brain.

So what you’re saying is, you noticed it once 20 years ago on a computer, then nothing for years until you noticed a ping pong ball, then many years after you noticed on tv only, then a quick decline over a period of 2 years to have it in every day life all the time. When it moved to the TV, was it all the time or only occasionally? You mentioned the frame frequency made a difference, but if you watched the same show again that previously caused the stop/start, did it happen again? I was watching a show the other day when it was really bad, then rewatched it the day after and it wasn’t so bad.

I wonder whether you do have vestibular migraine or some kind of migraine condition.

Did they find a lesion on the V5 spot on your occipital lobe? I’m going to really investigate my last MRI now. I haven’t read the report but know about the lesions from a previous MRI years ago.

I hope it doesn’t progress worse.

Where are you from?