I started taking Paxil in 2015. After being sick for months from taking medications I had a tolerance to, I was reluctant to try it. Because of how sick I had been, I was doing even worse mentally than I had in the past few years. The bottle of pills sat on my desk until one late night I forced myself to swallow one – if only I had known then what I know now.
The first couple of days on Paxil were brutal: hot and cold flashes, feeling exhausted, sore, stomach aches, loss of appetite. I ate almost nothing for days, and only when I felt myself becoming faint, I forced something down. But the side effects went away, and I started to feel better.
At first, Paxil seemed to help me, but that slowly changed to just keeping things stable, with no major improvements. I was always told medication doesn’t “fix” things, and that most of coping with mental illness came down to changes in behavior. I stayed on the drug for a while but soon was interested in switching to something else. The doctor I was seeing misinformed me that I had no other options but to either stay on Paxil or return to a medication I had previously taken. Due previous bad reactions I’d had when going back on old medications, I made the choice to continue with Paxil.
For the initial two years I was on Paxil, I thought becoming sick from missing a dose was something that happened only to me. If I accidentally fell asleep without taking it, I would wake up feeling extremely ill. I would just lie in bed, sweating one minute, freezing the next. The buzzing in my ears from tinnitus would be so loud I couldn’t think straight. I couldn’t walk around without feeling like I would pass out. Just turning my head would cause severe motion sickness. Looking at a screen would tie my stomach in knots. The only thing that would stop my symptoms was taking my next dose.
But it wasn’t actually the physical issues that caused me to quit Paxil. It just wasn’t doing enough for me mentally. I was recommended to take the controversial DNA medication test, designed to show what psychiatric medications would work best for me. As I’ve been on a long list of prescriptions and had my fair share of trial and error, I decided to take a chance with it… and Paxil was on the list of drugs the test said I shouldn’t take.
I started taking a new antidepressant along with Paxil. Then, my doctor (the same unqualified one), told me I could simply stop taking the Paxil. I was at 40mg, which is considered an elevated dose – my highest dose was the potentially harmful 80mg. In the past, I had weaned off medications to 10 or 5mg doses before quitting, but I wanted to be off Paxil immediately, so I did exactly what he said, knowing no better.
I stopped taking Paxil on June 19, 2020, and soon learned that quitting that medication cold turkey is like having a physical illness. It was similar to what I had felt when I first began the drug, but a million times worse. The mornings were not as bad as the afternoon and evening, when my withdrawals would become the most intense, since my body had been used to me taking it at night. Some withdrawal symptoms that people experience, myself included, are: dizziness, loss of appetite, vomiting, headaches, chills, hot and cold flashes, sweating, sensitivity to heat and cold, shaking, confusion, slurring words/difficulty speaking, nightmares, restlessness, trouble sleeping, nausea, kinetosis (motion sickness), rise in anxiety & depression, tremors, flulike symptoms, chest pains, heart palpitations, digestive issues, tinnitus, and brain zaps – a feeling of electrical shocks in your head.
I attempted to journal every day about my withdrawals, with hopes to post about it when I recovered. Unfortunately, that failed because I was unable to focus and type, and looking at my phone screen made me feel even worse; however, here are some logs from the first couple days:
June 22: I wasn’t able to log Sunday and Monday because of how sick I was, so these are being written on the 23rd. Monday was the worst. The withdrawal symptoms seemed to spike for about 20-45 minutes every hour, then I just felt lousy for the remainder of the time. Appetite came and went; I was able to eat but drinking was challenging – every liquid seemed disgusting. It takes me hours to convince myself to eat something, and I have to think about it to get myself ready. Evenings are worse than the daytime. Monday night I truly was at the end of my rope. Chills all evening. The heat flashes were becoming increasingly difficult – even after taking a cold shower and lying in front of my two fans, I still felt like I was in 90 degree weather. The motion sickness feelings and flulike symptoms with it were overwhelming. Brain zaps were present but not as severe as my other symptoms.
June 23: Morning was fine, so was early afternoon. Around 5:45, I started feeling very sick. Took time to just lie around which helped. My tiny portable fan has been a lifesaver. Headaches and brain zaps are HORRIBLE. Dizziness and motion sickness isn’t as bad as yesterday but still were prevalent during the evening hours.
June 24: Didn’t start getting sick until around 6 today, better than before. Same symptoms, motion sickness, brain zaps, headaches and being lightheaded. EXTREME irritability, getting angry at the slightest things. Been slightly hot and very queasy.
I was off the 40mg for six weeks completely, and it was only toward the end that I couldn’t handle it anymore. One night I had chest pains and severe heart palpitations. I already have an irregular heartbeat and palpitations, but these just seemed like they would never stop. I was ready to go to the emergency room, but I was reluctant as I knew all they would do was stick an IV in my arm and call my doctor in the morning. I was able to get in emergency contact with my psychiatrist and was shocked by our conversation. “Are you sure you don’t have COVID?” he asked, annoyed. COVID? Are you kidding me? I thought. My symptoms were clearly due to the Paxil withdrawals, and I was angry with him for even suggesting it could be COVID of all things. I reminded him I’d been having these feelings for weeks now, only starting when I had quit the Paxil, and this had happened before when I missed a dose. He unenthusiastically prescribed me 20mg of the pills, and told me to take them and finish with that dose.
During this time I did more research about Paxil and was surprised to see that what was happening was not unique to me – in fact, it was common among Paxil users. It seemed like the overwhelming majority of people who took the drug had a difficult time getting off, with some even saying the withdrawals were similar – or worse – to those of heroin and meth. I was shocked this medication was still on the market and widely prescribed. But this was only the beginning of the end of getting off.
I was curious what other people did to handle the sickness and how fast they were able to taper. I found Facebook support groups with names like “Paxil Withdrawal Support,” “Paxil Should Be Illegal,” and “The Truth About Getting Off of Paxil.” Unsatisfied with the guidance I was getting from my doctor, I decided to join all the groups I could find and explain my situation.
People were very informative, reassuring me that what I was dealing with were in fact withdrawals due to the Paxil and gave me advice for starting the process of weaning off it. The longer you’re on Paxil and the higher the dose, the more challenging it is to get off. Most people recommended a 10% drop and to only do this very slowly. I did break the rules a bit, and I also didn’t use a pill press or liquid form of the medication, which are suggested for accuracy (I do regret this).
I asked my doctor for my prescription to be ordered at 10mg, the lowest dose you can get in pill form. I started by taking the 20mg to get myself stabilized. Then, every six weeks, I would do a 10% drop. With every cut I would feel it – the “Paxil flu.” While these symptoms weren’t nearly as severe as they’d been when I quit cold turkey, they were still painful to endure. The one that seemed to get worse during this time rather than when I was completely off was difficulty talking. I would constantly starting speaking and then end up in a tangle of jumbled words. I’d say the same sentence over and over again because the words just refused to be spoken as they should. The kinetosis was one of the most consistent and frequent symptoms, so I started carrying around pressure motion sickness bands with me and would wear them for the entire day.
It took me ten months to get off Paxil after five and a half years of taking it. I finished in March of 2021 at a dose of 0.75mg. For reference, with most medications I’ve taken that needed tapering, I would stop between 15-5mg. Honestly, I tapered too fast; when I got to 5mg I started cutting my dose by 30-50%, which I strongly discourage, and I should have stopped at 0.35 mg. When I was on 1.5mg, I made the attempt to stop, only realizing how bad I was doing not only physically, but mentally as well. It was like everything I normally feel in terms of anxiety and depression were magnified by a million. I started again the next night on the 1.5mg and continued to taper.
I’m only three and a half months off of Paxil, but it feels a lot longer. Paxil withdrawals were some of the worst sickness I’ve ever felt in my entire life. The pain is indescribable, and no one, especially not psychiatric patients, should be dealing with it. I’ve never been anti-medication; I truly think there is a potential benefit for people who actually need it – but the older I get, the more I see the flaws in psychiatric drugs and how much is still unknown about them.
In a way, I don’t regret my Paxil experience, as awful as it was. It opened my eyes to the disingenuity of psychiatrists, how most of them are simply pill-pushers who don’t care about their patients. I’m more aware of the frightening number of people on antidepressants, some of whom don’t need them – lazy parents, people with normal problems who don’t want to deal with them, etcetera. The unknown of the psychiatric world is terrifying, and the medications are nothing to take casually.
So, what happens now? I’m totally off Paxil and feel no need to go back on, which is fortunate, because some people have such severe symptoms even after tapering off that they need to micro-dose for years after. Something I experienced, which my fellow group members described as “windows,” are times where you have feelings of Paxil withdrawals months or even years later. I first noticed this when I started having “air hunger,” a name given to the feeling of the air being too “thick” to inhale, and like you can’t get a deep breath. I thought this was my nose deviating (again) or due to my allergies, but after seeing my plastic surgeon as well as my ear nose and throat doctor and taking allergy pills, I realized it was this. I’m still dealing with the loss of appetite and word jumble too, but I expect this to get better as time goes by.
I wish I had some solid advice for anyone getting off Paxil or interested in doing so. It’s one of the scariest things I’ve been through, and not having the support of a doctor made it even worse. The only thing I suggest is to let yourself rest and not be too hard on yourself. There were times I would just lie down shaking, because I couldn’t get up. I consumed nothing but steamed broccoli and blue Gatorade for two days straight because they were the only things I could stomach. Be easy on yourself, and fight through the pain.
Talya's life 