Trying to understand or cope with unexplained issues with vision / aura.
March 10, 2019 8:04 PM Subscribe
Around 6-8 months ago I started getting some strange issues with my vision (swirling colours / visual snow / flash bulb effects), and can't seem to get to the bottom of it. Would love to hear if anyone else has experienced this and what avenues to explore to get a more accurate diagnosis / and (hopefully) treatment or simply strategies to cope with this new reality.
For background, I'm a 38 y/o male, no drug use or drinking. Pretty clean and healthy otherwise! Obvious YANMD prefaces here, but really just looking for anyone else who might have experienced this, as it's a bit freaky!
I recently completed a two year weaning off process from Effexor XR, which has caused a big spike in anxiety which I'm managing well for the most part. These episodes started happening around 6 months before I completely stopped, but I can't determine if they might be related to the actual cessation of the meds (Which I was on for about 23 years), or just a result of the increased anxiety.
I've been to an ophthalmologist and a retinal specialist, and had full workups with no issues. Also had both a CT and MRI scan done of the brain - all good there. GP thinks it's just anxiety, which I can totally relate to, however it seems to be a more persistent issue that happens daily so I'm not quite sure. I haven't seen a neurologist, but feel a bit sheepish to ask at this point after all the GP visits but definitely open to it.
The episodes are pretty constant - they are just most apparent when I close my eyes to go to bed, or trying to do something like meditate with my eyes open or get into a more darkened space. My research came up with the term 'Photopsia' - Basically, "occurrence of bright flashes of light in the visual field, similar to the effect that occurs when an old-fashioned camera flash bulb would go off" - I also get very small pinpricks of bright lights that last for a split second, or small clusters of sparkles - but the biggest feeling is like waves of darker colour - like an expanding heat map. There's also tinnitus that happens at the same time, which makes life a real walk in the park at the moment.
Just to be clear, I don't think this is a 'Silent Migrant' - I've had two of those before with more traditional bright wavy scintillating aura that goes away after 5-10 minutes. This is a more ongoing thing like floaters - once you notice it they don't go away, but totally different as the sensation is moving and not fixed if that makes any sense, and I can always see normally and function fine, even though things feel a bit 'off'.
There's no other pain - no headache, nausea etc, which just makes the whole thing even more confounding and a catch 22 as it comes up most at the times I'm trying to relax, and they can definitely cause a bit of an anxiety spiral.
So yes, my question - Has anyone else experienced these things in an ongoing way? If so, what caused it and how did you treat it? More importantly though, how do you cope with it? TIA.
For background, I'm a 38 y/o male, no drug use or drinking. Pretty clean and healthy otherwise! Obvious YANMD prefaces here, but really just looking for anyone else who might have experienced this, as it's a bit freaky!
I recently completed a two year weaning off process from Effexor XR, which has caused a big spike in anxiety which I'm managing well for the most part. These episodes started happening around 6 months before I completely stopped, but I can't determine if they might be related to the actual cessation of the meds (Which I was on for about 23 years), or just a result of the increased anxiety.
I've been to an ophthalmologist and a retinal specialist, and had full workups with no issues. Also had both a CT and MRI scan done of the brain - all good there. GP thinks it's just anxiety, which I can totally relate to, however it seems to be a more persistent issue that happens daily so I'm not quite sure. I haven't seen a neurologist, but feel a bit sheepish to ask at this point after all the GP visits but definitely open to it.
The episodes are pretty constant - they are just most apparent when I close my eyes to go to bed, or trying to do something like meditate with my eyes open or get into a more darkened space. My research came up with the term 'Photopsia' - Basically, "occurrence of bright flashes of light in the visual field, similar to the effect that occurs when an old-fashioned camera flash bulb would go off" - I also get very small pinpricks of bright lights that last for a split second, or small clusters of sparkles - but the biggest feeling is like waves of darker colour - like an expanding heat map. There's also tinnitus that happens at the same time, which makes life a real walk in the park at the moment.
Just to be clear, I don't think this is a 'Silent Migrant' - I've had two of those before with more traditional bright wavy scintillating aura that goes away after 5-10 minutes. This is a more ongoing thing like floaters - once you notice it they don't go away, but totally different as the sensation is moving and not fixed if that makes any sense, and I can always see normally and function fine, even though things feel a bit 'off'.
There's no other pain - no headache, nausea etc, which just makes the whole thing even more confounding and a catch 22 as it comes up most at the times I'm trying to relax, and they can definitely cause a bit of an anxiety spiral.
So yes, my question - Has anyone else experienced these things in an ongoing way? If so, what caused it and how did you treat it? More importantly though, how do you cope with it? TIA.
Response by poster: Yes - Full dilation and pressure tests and cameras, I had the works done twice.
posted by LongDrive at 8:20 PM on March 10, 2019
posted by LongDrive at 8:20 PM on March 10, 2019
If you’re taking any prescription meds I’d recommend reading through all the possible side effects and see if any match your symptoms. I had something similar which no doctors caught and it was only luck that I got clued in to the possibility. In my case dropping the med took care of a number of weird side effects.
posted by DrumsIntheDeep at 8:40 PM on March 10, 2019 [1 favorite]
posted by DrumsIntheDeep at 8:40 PM on March 10, 2019 [1 favorite]
I have these symptoms due to a retinal condition that I have. That doesn't mean you have the same thing I do. Have you also experienced any issues with night blindness or trouble coping with dramatic changes in light (walking into a dimly lit room from a sunny environment) where your eyes take a long time to adjust? As far as coping...I just deal with it, I guess. Though prolonged exposure to light sources (like computer screens) do make it worse so resting your eyes would be one suggestion to alleviate it somewhat.
posted by acidnova at 8:43 PM on March 10, 2019
posted by acidnova at 8:43 PM on March 10, 2019
How much did the retina specialist do? In order to get my diagnosis back in the 90s, I spent a full day doing a battery of tests. Waaaaay more than just eye dilation and pressure tests.
posted by acidnova at 8:46 PM on March 10, 2019
posted by acidnova at 8:46 PM on March 10, 2019
Response by poster: @acidnova - Interesting! What was your condition if you don't mind me asking? I haven't had the same issues, but didn't know that retinal testing could go that deep.
@drumsinthedeep - No meds presently.
Hope I'm not threadsitting here - just want to answer things properly!
posted by LongDrive at 9:47 PM on March 10, 2019
@drumsinthedeep - No meds presently.
Hope I'm not threadsitting here - just want to answer things properly!
posted by LongDrive at 9:47 PM on March 10, 2019
Best answer: I am a research neuroscientist, not a medical doctor, but I can give you a speculative, non-medical opinion. I am not qualified to give a diagnosis to anyone, let alone over the internet. I would hesitate to give my opinion at all if not for the fact that you've apparently already spoken about this with several doctors who would be likely to catch it if this were a symptom of a more serious problem of the sort I wouldn't know about. If these visual effects are strong enough to bother you during your daily life, or if you're simply worried about what it might mean, I do think seeing a neurologist is a good idea. With that disclaimer, I do have a guess.
I doubt this is a symptom of your anxiety, and I suspect your GP is suggesting that only because he/she is stumped as to what else it could be. Assuming that your ophthalmologist has done everything to rule out a problem with your eyes, I'd guess that this is related to going off Effexor. As you may know, Effexor acts by modulating the serotonin and norepinephrine systems in your brain. Although pop neuroscience often describes these neurotransmitters in terms like "happiness chemicals," in fact these neurotransmitters have a whole lot of other functions as well which are unrelated to mood regulation. Serotonin receptors, in particular, are highly enriched in the early visual cortex, and interfering with the serotonin system can cause physiological changes that lead to increased spontaneous waves of activity, which could produce the kind of visual effects you're seeing. I'm not as familiar with the auditory system, but I believe changes in the serotonin or norepinephrine systems could also lead to tinnitus.
I also take an SSRI for anxiety and have noticed some visual effects (different from what you describe) that appear to be associated with going on or off the drug; in my case, they have been fairly transient. I think it's likely that your brain is still adjusting to the absence of the Effexor in your system (these changes can take quite some time in some cases), and you'll find these effects disappear eventually.
Additionally, the kind of visual effects you describe are fairly normal for some people to experience when their eyes are closed in a calm state. I've had them all my life, and kind of enjoy them when I'm in bed getting ready to go to sleep. I find that focusing on them tends to cause them to become stronger. However, I can imagine it would be annoying or upsetting to have that going on while your eyes are open and you're moving around in the world. If you get to a point where they're still occurring when you close your eyes but not the rest of the time, it's possible that this is now just a normal thing for you, too, and there's nothing to be anxious about. My father has also told me he likes to watch them while he meditates, so maybe you'll be able to get to a point where they actually help you relax, rather than cause an anxiety spiral.
All that said, since this is new for you, I don't think it would be irrational to want to talk to a neurologist about it. The normal MRI and CT scans are a good sign, but a specialist opinion might help set your mind at ease.
posted by biogeo at 11:25 PM on March 10, 2019 [18 favorites]
I doubt this is a symptom of your anxiety, and I suspect your GP is suggesting that only because he/she is stumped as to what else it could be. Assuming that your ophthalmologist has done everything to rule out a problem with your eyes, I'd guess that this is related to going off Effexor. As you may know, Effexor acts by modulating the serotonin and norepinephrine systems in your brain. Although pop neuroscience often describes these neurotransmitters in terms like "happiness chemicals," in fact these neurotransmitters have a whole lot of other functions as well which are unrelated to mood regulation. Serotonin receptors, in particular, are highly enriched in the early visual cortex, and interfering with the serotonin system can cause physiological changes that lead to increased spontaneous waves of activity, which could produce the kind of visual effects you're seeing. I'm not as familiar with the auditory system, but I believe changes in the serotonin or norepinephrine systems could also lead to tinnitus.
I also take an SSRI for anxiety and have noticed some visual effects (different from what you describe) that appear to be associated with going on or off the drug; in my case, they have been fairly transient. I think it's likely that your brain is still adjusting to the absence of the Effexor in your system (these changes can take quite some time in some cases), and you'll find these effects disappear eventually.
Additionally, the kind of visual effects you describe are fairly normal for some people to experience when their eyes are closed in a calm state. I've had them all my life, and kind of enjoy them when I'm in bed getting ready to go to sleep. I find that focusing on them tends to cause them to become stronger. However, I can imagine it would be annoying or upsetting to have that going on while your eyes are open and you're moving around in the world. If you get to a point where they're still occurring when you close your eyes but not the rest of the time, it's possible that this is now just a normal thing for you, too, and there's nothing to be anxious about. My father has also told me he likes to watch them while he meditates, so maybe you'll be able to get to a point where they actually help you relax, rather than cause an anxiety spiral.
All that said, since this is new for you, I don't think it would be irrational to want to talk to a neurologist about it. The normal MRI and CT scans are a good sign, but a specialist opinion might help set your mind at ease.
posted by biogeo at 11:25 PM on March 10, 2019 [18 favorites]
I don't mind saying what I have. I only didn't say it initially because I think it's unlikely you have the same thing and didn't want to frighten you. I have Retinitis pigmentosa which is a degenerative, inherited eye condition. I mostly brought it up because lots of people think they get a full battery of eye tests done when, no...they really didn't.
posted by acidnova at 12:50 AM on March 11, 2019
posted by acidnova at 12:50 AM on March 11, 2019
I have had this, minus the bright flashes, since I was about 9 years old. I call them "sparklies." I have gotten used to it and it's fine, but when I was younger I found it very scary and I went through a ton of tests. Nothing was discovered to be causing it for me, and it was basically decided that I wasn't actually experiencing it, that I was "just anxious," or looking for attention. I saw a neurologist recently for something unrelated and mentioned it and even she told me I was "incorrect" about what I was seeing, and her demeanor suggested that she thought I was making it up. I've never gotten anywhere talking about it with a doctor, and I've just learned to live with it. I honestly don't notice it most of the time anymore.
I don't know that I have specific coping advice, but thought it might be helpful to hear that you aren't alone, other functional adults have whatever this is, and you do get used to it over time.
posted by sockermom at 5:34 AM on March 11, 2019
I don't know that I have specific coping advice, but thought it might be helpful to hear that you aren't alone, other functional adults have whatever this is, and you do get used to it over time.
posted by sockermom at 5:34 AM on March 11, 2019
Go see a neurologist. I had the same symptoms pretty much and the turned out to be due to an increase in the pressure in fluid in my brain. Now is unlikely that this is your cause because a decent ophthalmologist should have noticed changes in your optic disc of that was the cause, but it leads me to also suspect a neurologic cause, though for more anecdotal reasons than those given by biogeo.
posted by wwax at 8:05 AM on March 11, 2019
posted by wwax at 8:05 AM on March 11, 2019
I'm a neurologist. Please see a neurologist, ideally a neuro-ophthalmologist (your nearest university hospital may have one on faculty). I'm not sure what this would be, but the simultaneous presence of tinnitus -- dysfunction of a different cranial nerve in a totally different part of the brain -- triggers my spidey-sense.
posted by basalganglia at 9:39 AM on March 11, 2019 [3 favorites]
posted by basalganglia at 9:39 AM on March 11, 2019 [3 favorites]
Boy, do I ever have this. I love the answer you marked correct. Visual snow is supposed to be a migraine aura and I am a migraineur so I assumed that was it. However, I don't just see visual snow constantly, I also get near constant auditory snow, hissing that is not the same as ringing in the ears which is also not the same as the high pitched whine you get when an auditory nerve is dying and does not seem to be linked to changes in my blood pressure. i know they're not the same because I've had the auditory snow effect at the same times as hearing the other noises.
I've had the visual snow since childhood getting stronger the older I am.
Effexor, huh? I'm on that. Wonder what will happen when I go off it.
I do know that when I am tired it is stronger which is why it can be annoyingly overwhelming at bedtime when I want to sleep but the sparkles are so bright and the noise is so noisy. So I find that giving my sensory apparatus a break helps calm down the symptoms. I now use the auditory snow as a gauge for if I have been on the computer too long. Exercise, or lying down with my eyes closed in a quiet room both help abate these when they are troublesome.
I'm really curious if ever go stone blind whether the visual snow will go away. Can you see your optic disk where there are no rods and cones in your eyes so it appears as a tiny perfectly black dot?
posted by Jane the Brown at 11:16 AM on March 11, 2019
I've had the visual snow since childhood getting stronger the older I am.
Effexor, huh? I'm on that. Wonder what will happen when I go off it.
I do know that when I am tired it is stronger which is why it can be annoyingly overwhelming at bedtime when I want to sleep but the sparkles are so bright and the noise is so noisy. So I find that giving my sensory apparatus a break helps calm down the symptoms. I now use the auditory snow as a gauge for if I have been on the computer too long. Exercise, or lying down with my eyes closed in a quiet room both help abate these when they are troublesome.
I'm really curious if ever go stone blind whether the visual snow will go away. Can you see your optic disk where there are no rods and cones in your eyes so it appears as a tiny perfectly black dot?
posted by Jane the Brown at 11:16 AM on March 11, 2019
Please follow basalganglia's advice if you can. I do think that the involvement of both visual and auditory systems is consistent with a neuromodulatory disruption from the Effexor, but if a neurologist thinks a neurological exam is warranted from your symptoms, then you really should have one.
posted by biogeo at 7:59 AM on March 12, 2019 [1 favorite]
posted by biogeo at 7:59 AM on March 12, 2019 [1 favorite]
I’m also a migraineur with generalized anxiety. I’ve had similar symptoms lately after discontinuing sertraline. In my case, it’s visual snow or persistent aura, dizziness, ears popping, and concentration problems. Full work up including MRI.
I’ve concluded that it’s anxiety, and restarted sertraline + taking hydroxyzine for startup anxiety. Within days, the symptoms have vanished.
I know it’s so weird — I didn’t even feel _that_ anxious. I was functioning, making it in to work. Seeing friends & family. Sure, often it was against a strong background of anxious thoughts, but I thought I was doing well. But the medications worked. *shrugged*
posted by ElisaOS at 6:45 PM on March 20, 2019
I’ve concluded that it’s anxiety, and restarted sertraline + taking hydroxyzine for startup anxiety. Within days, the symptoms have vanished.
I know it’s so weird — I didn’t even feel _that_ anxious. I was functioning, making it in to work. Seeing friends & family. Sure, often it was against a strong background of anxious thoughts, but I thought I was doing well. But the medications worked. *shrugged*
posted by ElisaOS at 6:45 PM on March 20, 2019
Oh! And 8 years ago, when I quit Effexor, I had tinnitus for about 10 days. Associated with moving my eyes from side to side. It went away.
posted by ElisaOS at 6:59 PM on March 20, 2019 [1 favorite]
posted by ElisaOS at 6:59 PM on March 20, 2019 [1 favorite]
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posted by todolos at 8:11 PM on March 10, 2019