A three-year journey through SSRI withdrawal

I experienced a neurological injury after being on an SSRI (Citalopram) for 5 years. I think it started due to a traumatic event and stressful time, but I'm not sure. At first it was just visual snow. I decided to gradually taper off my SSRI when I read that it can cause visual snow. Finding the word for the pixelated weird way I was seeing things was a struggle. I googled and watched YouTube videos about visual issues until I kind of self-diagnosed it.

After starting to taper it off, things got a lot worse. I started having daily panic attacks, often multiple panic attacks per day. Prior to this I had never had a panic attack in my life. I struggled to sleep for the first time in my life, developed tinnitus, light sensitivity, lingering after-images (like you usually get when looking into the sun), floaters in my field of vision, brain fog, and a dizzy/vertigo-like feeling. I also had a lot of trouble judging distance, and stationary objects sometimes seemed to kind of move around or distort slightly in my field of vision. Reading became so difficult due to the visual disturbances I was experiencing, which was really hard for me since I love reading.

I also experienced intense restlessness, especially in my feet and legs, and sometimes I had to go jogging multiple times per day to try to get rid of the restlessness and anxiety. Just for context, I'm not a jogger under normal circumstances. I was terrified on a daily basis that I was losing my mind. At work, when I felt a panic attack coming, I would have to go lock myself in the bathroom until it passed.

Re-introducing the SSRI didn't make the symptoms go away, but it did make it slightly more bearable, so I increased the dosage again and started tapering off much more slowly over multiple months. I did this by myself without a doctor's help. Doctors said tapering off over a two-week period was sufficient, which obviously wasn't sufficient for me. Even though I was tapering over months, the symptoms were still unbearable at times, but I thought I just needed to push through and that it would resolve once I was completely off of the medication. Only, it didn't.

I found ways to deal with the panic attacks (embracing/accepting the fear, breathing into a paper bag, running cold water over my hands and face, eating sour candy, counting 5 things I could see, 4 things I could touch, etc.), so they went away after a few months, and the extreme restlessness also eased up, but the other symptoms persisted (along with intense anxiety). I knew my symptoms had to be due to going off of the SSRI but none of the doctors I went to could help me (I went to 3 or 4 if I remember correctly). They just said that going off of the SSRI couldn't be causing what I was experiencing. One doctor said it was migraines but the migraine medication just made the visual snow, tinnitus, and dizziness worse. Another doctor prescribed a beta blocker which at least helped me to experience some calmness and better sleep. Another doctor referred me to an ophthalmologist to have my eyes and optic nerve assessed to rule out a brain tumour (obviously the ophthalmologist found nothing wrong with me).

Prior to this whole thing I was someone who could drink multiple cups of coffee per day, even a cup of coffee at night and go to sleep no problem. After everything, one cup of coffee made the anxiety, panic attacks, and insomnia unbearable, so I stopped drinking coffee. About 6 months after all this began, I got really sick. My doctor diagnosed me with tonsillitis but antibiotics didn't help. Ever since then, my immune system became very weak. One drink of alcohol would make me sick (not nauseated, but sick as in cold/flu symptoms that would last about a week) and made the visual snow worse, so I stopped drinking alcohol too. Even so, I would get sick all the time. Just as I recovered from one bout of cold/flu, I would get sick again. My skin also became really bad (acne on my face, chest and back, and eczema on my hands). During this time my husband and I got pregnant but I had a miscarriage after a high fever due to getting the flu again. Eventually I went to a doctor who suspected that I had long covid and tested me for Epstein-Barr virus. I did end up having had it (the "tonsillitis" was actually that), so she prescribed an antiviral medication. After two courses of the medication, I didn't get sick anymore and started having more energy and less brain fog. To this day it feels like that doctor saved my life.

The other initial SSRI withdrawal symptoms gradually got better with time until after about two years only the visual snow was still present. It took three years for the visual snow to go away, but to this day (four years later) I still get it when I'm tired or stressed. I can still only tolerate small amounts of coffee (too much makes me anxious) and alcohol brings on visual snow, but for the most part I feel like my old self again.

While all this was happening, I had family members who thought it was all in my head and that I just had to think more positively, then it would go away. So I downplayed the whole thing a lot and didn't really talk about it much while it was going on, except with my husband. It was a really lonely, hard time for me and set me back emotionally quite a bit, especially after the miscarriage. Eventually, after most of the symptoms had already resolved, I stumbled upon a YouTube video where a psychiatrist described SSRI withdrawal neurological injury and finally I could start making sense of what I went through and explain it to my husband.

I am very grateful that with time and rest, my brain and body were able to heal themselves. In January our beautiful baby daughter was born and I am so grateful for our rainbow baby every second of every day. I'm also grateful that awareness is being spread about SSRI-induced neurological injury so that other people might be spared this horrible condition, since I know that unfortunately not everyone with a story like mine gets to have a happy ending.