Visual Symptoms Only? Oscillopsia

Symptoms 🌡
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Hi,

I’m new here so I apologize if I’m not doing this right. Also, I’m on my cell phone so I apologize if the formatting is off. About 8 weeks ago I had two mild episodes of positional vertigo, I thought maybe it was just BPPV because I did feel a little swimmy and off for about two weeks. The issue is I was left with the ‘bouncing vision’ or oscillopsia that has not resolved and only gotten worse. It started as just some things in my horizon bouncing up and down.

I’ve had all the vestibular testing and my inner ears are normal so the neurologist is saying I have vestibular migraines because it has to be a central issue. I’ve looked through the posts here but I’m not really been able to find someone like me where it’s just all visual symptoms. I know this isn’t a place to diagnose but I will list my symptoms here:

Vision bounces up and down when I walk.

Vision bounces side to side when I move my head.

When I move my head to the right even slightly things shift to the left a little bit, and vice versa.

Recently my vision has started to vibrate a lot when I’m walking, so it’s vibrating and bouncing up and down. And also noticed it vibrating when I’m sitting down.

Fast moving things like cars and ceiling fans look like they’re moving a lot faster than I know they are. This also happens when I’m watching TV, like if someone runs on the TV it looks like they’re moving at hyper speed.

I work on a computer and when I type the words on the screen vibrate slightly.

My vision was sometimes blur close up, like if I’m talking to someone their face looks blurry.

There’s sometimes a shimmer to everything around me.

I’m nearsighted and I haven’t been to my eye doctor yet but it seems like my far vision has gotten a lot worse in the past couple weeks.

So basically every time I move my head things are moving slightly or looking distorted. It has made doing day-to-day things and just living pretty impossible at this point. My neurologist doesn’t want me to take any medication and just wants me to take supplements for right now. My concern is that these visual symptoms are never going to go away, and I can’t really live my life like this. I’m concerned this is just some sort of neurological condition and not vestibular migraines since I only have this visual stuff.

Does anyone else have the visual symptoms only and has it improved for you over time? I see no future for myself right now and I’m very scared. I think I could handle some of this stuff if the bouncing and vibrating vision when I walked went away.

Tiffany

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Hi Tiffany

You do seem to have done it right along so no need to apologise.

I wouldn’t worry too much about thinking you are the only one who is ‘visual symptoms only’. Everyone’s experience of MAV is quite unique so there’s no desperate need to find another with identical symptoms. It wouldn’t necessarily prove anything. Nor would their route out necessarily be the same as yours. I understand what you are saying but suspect that either you actually do have other MAV symptoms which you have yet to recognise as being such and/or other symptoms have yet to appear.

I’m no medic but I know how confusing this condition often is particularly at the onset so here’s a few pointers to help you understand the condition a bit more. Go check out your eyes with your specialist for sure. All avenues are worth exploring however what you need to remember is that our eyes only gather visual information. It’s our brain that interpreted that information and dictates what we actually see. Visual issues are common with MAV but they are symptoms of the brain misinterpreting or receiving faulty information because your vestibular system is temporarily out of sync. It’s not usually the eyes at fault.

All these visual issues are referred to as ‘Visual Vertigo’ in other words a false sense of motion (that’s what vertigo is) seemingly caused by too much visual stimulation of one sort or another. Very common amongst MAVers. As is the visual, and other issues caused by motion, including the movement of your own head! The ‘bouncing’ is , as you’ve already stated, referred to as ‘Oscillopsia’ and is common with all vestibular disorders or so I have read.

The neurologist has told you you are experiencing vestibular migraine. Did he not tell you that it is a neurological condition? Not surprised. They rarely do. If he thought you had something more sinister I’m sure he would be ordering further investigations.

The visual issues you are currently experiencing are common with this condition. They are just one symptom. I assume by his actions your neurologist thinks that taking supplements may well control the condition for you in which case those visual symptoms will, over time, reduce considerably if not stop. You have every chance of seeing great improvement in the future. I’m sure if the supplements prove insufficient the neurologist will then make further suggestions such as a special Migraine Diet or the addition of a preventative drug. Meanwhile you need to try to trust his judgment, distract yourself with other things you can manage and try to relax.

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You have more than just visual symptoms, love. Visual vertigo plus swimmy and off are right in the VM/MAV wheelhouse. It describes my experience on a lot of days.

Welcome to our tribe of misfits, Tiffany. We’re happy you’re here.

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Well the swimmy, on a boat feeling only lasted for about two weeks. That disappeared and I actually felt better but the visual issues have stuck around. I don’t have any unsteadiness or internal swaying. My balance is definitely off when I close my eyes though. I went to one VRT session but she was only focused on my balance, when I would prefer to work on getting my brain and eyes to communicate again. I think I could manage ok if the visual stuff would just stop changing so much.

I will say I have not been taking care of myself at all since this started so I’ve barely been sleeping or eating and have just been staring at my phone for about 6 weeks, so all this could have contributed to my worsening symptoms. This has also left me with an intense amount of brain fog. I’ve lost close to 20 lbs and probably any muscle mass I had. I was managing to stay active at the beginning, taking walks and riding my bike but as the visuals progress I’ve become somewhat bed bound because the symptoms make me so anxious.

I also have not been able to get ahold of my neurologist since I had all the vestibular testing and MRI done so he could go over the results. He had given me a speculative diagnosis of vestibular migraine before the vestibular testing and MRI was done. This is also increasing my anxiety, something I never had before this all happened.

So sorry for all the rambling! I’m just floundering right now and don’t see a way out of this vicious brain cycle I’m in.

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If you have MAV your tests will be normal. We get diagnosed based on symptoms.

There are many ways out. Start by deciding you want out. Already tried that? Obviously not because you have yet to act on it. When you decide to act, try each of the following together or one at a time:

  1. Ditch the screens. Start with no more than 15 minutes at a time separated by hours.
  2. Maintain a regimented sleep routine.
  3. Hydrate with electrolytes.
  4. Remove caffeine and alcohol from your diet.
  5. Remove sugar and processed foods from your diet.
  6. Start eating lean meats and vegetables.
  7. Get some exercise every single day. The rule is stop or slow down when you feel 20% worse than when you started. Push the envelope a little more every day.
  8. Meditate, do yoga, pray.
  9. Find a good therapist.

MAV is genetic and likely incurable. It’s a hidden and unrecognized life long disability you learn to manage. You can thrive again but it takes discipline, perseverance and fortitude. Also, a good support network - that’s us. We get it. Been there, puked because of that, forgot what we were talking about. In a year or so, this nightmare time will be a memory.

Check out our wikis. Do searches. Then put the phone or screen down and give your overwhelmed brain the rest it needs.

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Hi Tiff,

I’m feeling for you and please stay strong. I know exactly what it’s like to feel your life is over. It’s not… but may need some alterations to your routines and hopefully some drugs if your doc allows it.

I’m mainly left with visual symptoms. Tv is bad, I’ve had the vibrations, the bouncing, the swirling, the blurry vision, the double vision. You name it! With the right course of action you can begin to improve.

Everyone here is a great support. Learn what you can and vent if you need to.

Bel

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Hi there!

Hope you have already adjusted to your new normal lifestyle. It would be hard at the start but, you will also get used to it. Besides we are here to support you. Get enough rest, your body badly needs it.

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Hi Tiffany, I started with same symptoms many, many decades ago. Unfortunately, in my case the oscillopsia has never resolved. I had severe migraines as a child and was diagnosed with Vestibular migraine back in 1998-99 after all my vestibular testing was essentially normal. I began to experience true vertigo with a bit of hearing loss back in 2016. Again, my vestibular testing is within normal limits. My specialists feel that I could have developed hydrops secondary to migraine at this stage. I take nortriptyline to control dizziness but it does not help with my oscilllopsia. I wish you the best in your journey and hope your physicians can find the underlying cause for your symptoms!

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Did you have any other symptoms besides the oscillopsia?

I’m two months in now and I just have these vision issues. The neuro-otologist I saw doesn’t think it’s vestibular migraines so I’m at a loss for what is going on with me. I’m just really hoping this oscillopsia goes away or lessens. Have you come across anyone on this forum or elsewhere who had a resolution with oscillopsia? I’m in VRT right now and my therapist is saying it could take 6-8 months to resolve.

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Hi Tiffany. I have read of others who have been helped by VRT depending on the cause of the oscillopsia. Have you been evaluated by a neuro-ophthalmologist?

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I have seen a neuro-opthalmologist, that was who I went to first. He found that I have mixed left beating and down beating nystagmus which he said is causing my oscillopsia.

I then went to a neuro-otologist who ruled out inner ear issues and says it’s central but doesn’t think I have VM. She also said the nystagmus is not present anymore. She says there is a disconnect between the way my brain and eyes are communicating and it should go away eventually.

I tried to reach back out to the first doctor to discuss what this all means but he has been very dismissive, would not talk to me, and had his medical assistant schedule me for another appointment in the end of July. (I guess he just wants my money.)

I went to VRT today and the therapist also told me this should go away but it might take 6-8 months.

I guess the diagnosis really doesn’t matter that much. I know I have the oscillopsia and I know I have two people telling me it’s going to go away but I have not been able to find anything online that says that’s the case. And I’m inclined to believe people who have been dealing with it more than the doctors.

I know I just have to let it go and try to survive through but I’m struggling because I feel like I did this to myself (long story short, running on a treadmill in a musty smelling sunroom, i think I’ve caused neurological damage.) So I’m having a hard time coping because I wish I would have never bought this treadmill during the height of the pandemic. I know I sound crazy and I truly believe I am losing my mind over this oscillopsia. I’ve been trying to get some mental health help but everyone is so booked up right now. I don’t know how to forgive myself and try to move on, especially when I can’t do anything without the world moving around me.

I apologize for the rant…

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Hi Tiffany. I realize how frustrating it can be without a solid diagnosis and what’s interesting is that I do not have nystagmus either. I was told that my cause is Central rather than peripheral in nature. Definitely keep with the VRT therapy to see if it helps in any way. Hopefully you will find relief. I have learned to accept and live with the movement as I do not remember what a non bouncing world looks like. With that said, I am very hopeful that the VRT will help you! Keep me updated as to how your therapy goes!

Tiffany, where are you located? If you are in the States, Johns Hopkins in Baltimore has a wonderful vestibular department. Lots of research and a world class physicians. Maybe a consult?

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Yep, I’m actually in Baltimore. Johns Hopkins is where I’ve been going. I’m scheduled for some sort of test in July that is part of a research study.

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Tiffany, Well you are in good hands! Who are you seeing at Hopkins? Years back I met with David Zee, he’s brilliant. In 2016 , I met with John Carey, he’s also well extremely well versed in vestibular disorders. Let me know how your follow-up and testing go!

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Hi Tiffany, I’m sorry to hear of your suffering. I too, experienced the symptoms you describe. Virtually all my symptoms were visual and made me feel absolutely awful and almost impossible to live my life. I had oscillopsia too, my vision bounced up and down when I walked, bad light sensitivity, distortions, lost my depth perception, and visual vertigo which was particularly bad in the supermarket. I did have to eventually go onto medication, 40mg of Amitriptyline gave me my life back. I am virtually back to normal now, 2 years on meds and have started reducing my medication. There is hope, but it’s really important to get the right treatment or you are just treading water and the suffering is prolonged. I wish you all the best. The Amitriptyline gives the brain a rest so it can start to heal itself, it couldnt hurt to give it a go

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As @NYGAL posts from all I’ve read you are under the best clinic possible for Oscillopsia. Nearly everything about it out on the internet in general seems to stem from them. It’s fortunate you are so close. If you are really struggling I’d suggest you try contacting them now to see if they can become more closely involved in management of your case.