There have been multiple RxISK posts on visual problems linked to SSRI use, starting a decade ago with Keeping an Eye on the Ball and most recently Visual Snow Protocol and New Study of Antidepressants and Vision Problems.
Visual Snow can be episodic linked to migraine, or continuously present when triggered by antidepressants.
When visual problems – palinopsia, enhanced entoptic phenomena, photophobia, and nyctalopia – co-occur with non-visual symptoms – tinnitus, concentration loss, dizziness etc – they are usually classified as Visual Snow Syndrome (VSS).
The 2 Cases here are extraordinary and shocking. They are followed by commentary and some more details about Visual Snow.
In November 2022, I was diagnosed with anxiety by my doctor and prescribed a Serotonin Reuptake Inhibitor (SSRI) – sertraline (100 mg). I disagreed with the diagnosis but decided to take the medication to see if it would help. The side effects I have suffered from ever since, even after stopping the medication, have made me regret this decision. This is the story of my experience, how it has impacted my life, and my struggle to be believed by doctors and opticians that my problems are caused by Sertraline.
Starting Sertraline, I had no immediate side effects but after a week or so I noticed symptoms of sexual dysfunction – reduced genital sensation, erectile dysfunction and difficulty achieving orgasm. These lasted until I stopped Sertraline in February 2023, but luckily subsided more or less straight away. I was not so lucky with the other side effect.
My main side effects are visual. These began 4-6 weeks after starting the drug and have persisted without improvement to the present day, 6 months later.
The main symptom is floaters. These are in both eyes, quite large, spider-like in shape, and always present. I see them with my eyes open and my eyes closed. They move around but I can stare straight at them for periods of time, and they blur my vision considerably. They are most troublesome when I am looking at a screen. But they affect my life everyday: at work, reading, watching television, and playing sport. But interestingly opticians cannot see them, unlike normal floaters you would find in the vitreous fluid of the eye.
The other symptom I have is the inability to see objects in detail if they are in front of a bright background. I have never had these symptoms before and am 100% convinced they were caused by the SSRI.
I went to two separate opticians for eye exams. Both said my eyesight was fine and they could see no evidence of floaters. When I described how large they were, they thought they should be able to see them, if they were in the vitreous fluid. I reported the problem to my doctor hoping for advice about how I could return my vision to normal. He reviewed the tests and did an eye exam but could find no problems and has referred me to an eye specialist.
I felt neither the opticians nor my doctor believed the floaters were real and they did not credit my suggestion of a link between the SSRI and my vision problems.
Following this disappointing outcome, I did my own research and was reassured to find I was not alone with this side effect. In their study, Healy, Mangin and Lochhead conclude that SSRIs can produce a range of adverse effects on vision that in some cases can endure after discontinuation of the drug – see Development and persistence of patient-reported visual problems associated with serotonin reuptake inhibiting antidepressants. Unfortunately, at the moment not many doctors are aware of this. I think it is important to spread this information as widely as possible so people can be more informed about the possible risks before they take SSRIs.
I still suffer from visual side effects with little hope they will improve. My advice to anyone before beginning an SSRI is to check out the potential side effects which could be more serious and long-lasting than the initial problem. I wish I had never been to the doctor.
I was prescribed Trintellix by my family doctor for panic attacks. Actually my panic attacks were due to a muscle in my neck that would impinge on my throat and trigger a panic attack. My doctor implied I had developed an anxiety disorder. Looking for relief, I caved in to his misdiagnosis and started Trintellix 10mg. It made me more anxious, to which my doctor replied that my anxiety disorder is worsening and I must keep taking it and increase the dosage in 10 days.
One hour after raising the dose to 20mg, I had significant visual disturbances. I started to feel imagined (unreal) and was unable to walk properly. I stopped Trintellix and the adverse reaction worsened. Trintellix has a long half-life. For the first 3 months after stopping I experienced crippling anxiety with tremendous confusion and then depression. These ultimately subsided.
It has been 8 months since stopping. I have now been diagnosed with unilateral vestibular hypofunction and Visual Snow Syndrome. This Visual Snow Syndrome link gives you all the possible symptoms.
I have every symptom on the list except dizziness which I had but is now eased. VSS dizziness is like looking through a warped glass pane that is always shaking. I still have vertigo (rocking on a boat) and a dizziness that my doctors think comes from a vestibular disorder. Twitching seems to have gone away too. I never had any migraine headaches.
There are other symptoms such as halos around lights, starbursts that are not described in VSS diagnostic criteria, but I have them and folks on reddit describe them as well.
There is a link to migraine. I have tried migraine treatments like nortriptyline 10mg which made things worse. I took depakote 250mg for 2 months, which also made VSS significantly worse, added tinnitus, caused me severe sedation, memory retardation, bad ophthalmic side effects and made my already impaired balance even worse.
Terminating depakote brought me back to my original vestibular disorder, VSS, memory baseline – except I now had permanent tinnitus. My ophthalmic side effects are still sort of slowly abating. I’ve been off it 10 weeks now.
My eyesight is perfect otherwise as checked by ophthalmologist. But my eyes muscles were compromised in a way I couldn’t describe. I couldn’t move them properly. I had to wear prism glasses for 2 months. This has resolved.
I have been following the reddit group who report countless reports of VSS after starting SSRIs. Some people on reddit report improved VSS symptoms with benzodiazepines. For me they made my VSS 10x worse and worsened my balance and postural control. A 0.5mg lorazepam makes things slightly worse. For me, 1mg magnifies VSS badly and takes 3-5hrs to wear off.
I have tried magnesium, vitamin b2, coenzyme q10 migraine preventative protocol for 2 months with no results. I’m now taking tanganil 5g/day as a vestibular stimulator, which is used for dizziness in France and Germany. It’s the only thing that has improved my walking posture along with vestibular rehab. I’ve been taking this for about 2 weeks now.
So far I have not found anything that has a positive impact on VSS.
Case 2 had tried Benadryl some years before, a serotonin reuptake inhibitor, and developed a mild case of what he now has.
He also developed VSS following doxycycline 20 years previously, which wore off after some weeks. He had not made a link to Trintellix until told doxycycline is a serotonin reuptake inhibitor.
Asked if his vestibular problems might link to Persistent Postural Perceptual Dizziness reported here recently, he said he could see the overlap but thought his was vestibular.
He had PSSD for 4 months after stopping Trintellix but this has resolved. He also had a constant numb feeling in his entire body, which has also resolved.
Many doctors attribute vision and balance problems to an anticholinergic effect. And because these problems can happen on benzodiazepines for instance, some medics claim benzodiazepines are anticholinergic. This is just wrong – there will be articles about this on RxISK soon.
Case 2 is based in Canada where he can, and has signed up for MAiD – Medical Assistance in Dying. He is giving it 8 months to see if things clear up. This may indicate just how debilitating VSS can be.
The original Healy, Mangin paper on these phenomena, based on RxISK reports, had Jonathan Lochhead as a co-author, a UK ophthalmologist. Hannaa Bobat, one of Jonathan’s trainees, drew our attention to an article on Visual Snow and Migraine to which she has responded with a letter mentioning our SSRI triggered Visual Snow paper and noting that given the sheer number of people on these drugs, ophthalmologists will likely need to get to grips with this pretty quickly.
Hannaa is presenting a paper on VSS and SSRIs soon. We asked her to comment on how she responds when people like the cases described here arrive in her clinic. She also commented on Bobat Letter on the Visual Snow and Migraine paper mentioned here.
Eye doctors like me commonly get faced with complaints of floaters. The first step is to work out exactly what the person means.
‘True’ floaters are clumps of protein floating around inside the eyeball. They occur because the vitreous humour, a jelly-like substance that fills the back cavity of the eye, gradually liquifies with age, forming clumps of more solid material dispersed within a more watery fluid. These clumps can be seen because they are in front of the retina, which lines the back wall of the eye and is responsible for seeing. They float around, much like the snow within a snow globe, and are hence called ‘floaters’. They are normally harmless, but a sudden change or increase can indicate another eye problem.
Lots of other visual disturbance may be described as floaters. ‘Pseudofloaters’ are not physical objects within the eye but are more likely to be coming from the brain. They can normally be distinguished from real floaters because they may be described as having different colours, as intermittent or as fixed in a particular part of the visual field. There may also be other visual symptoms, such as zigzag lines or blank patches, or general symptoms such as headaches or nausea. Pseudofloaters have many causes, ranging from harmless to serious.
There is one other option – Enhanced Entoptic Phenomena. In this case, the person may have true floaters but there are very few to be seen when we examine the eye. The person has a hyper-awareness of even tiny particles within the eye that most people would barely notice. In fact, they may also be able to see other things inside their eyes such as the blood vessels and the blood cells moving within. Enhanced Entoptic Phenomena are very common in anyone with Visual Snow Syndrome.
My priority is to look for a serious underlying cause, which could be life or sight-threatening. Once this is ruled out, unfortunately there are few effective treatments available and you may find yourself being discharged from the clinic. Perhaps this is why Visual Snow and VSS are not widely known about by eye specialists.
These visual problems are not understood but awareness is growing amongst the medical community. Ultimately, we are led by our patients – the more you report your symptoms, the more we can find out about why they occur and the greater the chance of finding a treatment. So we would encourage anyone who might be experiencing these visual problems like these to tell their doctor and to submit a report to RxISK.org.
A Growing Wave?
One of the authors on the Visual Snow and Migraine article above is Francesca Putedda. She has another article that gives a Brief History of Visual Snow – it was only described in 1995, with the word Visual Snow only featuring in an article title in 2013. This time frame maps quite well on to the history of PSSD and SSRIs.
Francesca has worked with Peter Goadsby, perhaps the person who did most early on to put this problem on the map. The image above comes from one of Peter’s patients, a 12 year old girl – the first minor to be diagnosed with the problem in 2013. Most early cases have been linked to migraine.
The first report of drug induced Visual Snow received by RxISK was in December 2013. It took time for us to realize there was a real issue here and to add the RxISK trademark and start saying SSRIs cause Visual Snow and Visual Snow Syndrome – adding that like PSSD this problem might only start as treatment was being stopped and it could endure for years afterwards.
We had great difficulties finding an ophthalmologist or neuro-ophthalmologist willing to get involved until Jonathan Lochhead stepped up. This meant our article on drug induced VS was pipped to the post by a Case Report of VS on Citalopram. Our article reports on a larger number of cases than FDA had at the time and with a wide range of visual effects beyond strict Visual Snow – the tendency now seems to be to lump all strange vision effects like palinopsia and nyctalopia under a Visual Snow heading.
Enhanced Entoptic Phenomena are truly intriguing. The Eren et al case report linked above makes a fascinating case that some of what goes on with SSRI withdrawal might link to the perceptual phenomena that happen on LSD. Does this underpin Enhancement? If it does, is it a brain effect or a sensory receptor effect and what might the links to PSSD be?
Another Cevik et al article talks about phenomena like Occipital Bending – see on Brain scan below how the Left Rear bit of the Brain bends over or around the Right bit.
You readers may have this – it seems to predispose to migraine and depression and now perhaps Visual Snow. No-one involved in writing this piece or likely who reads this post will have ever heard of Occipital Bending, although it has an impact on not just how we process visual information but how we speak.