koto: It’s Not Easy, But It’s Worth It (1 year withdrawal free!)

[koto]

By the time I am writing this, I am 1 year and 9 months off SSRI’s and 1 year free of withdrawals! I am going to try and summarize everything about my experience, so this is going to be a long read. I would not recommend it to those who just started their journey as I get very detailed when describing my symptoms. Some parts are complicated because I had many things overlapping; covid, THC, caffeine withdrawal, etc. You can find my introduction here: https://www.survivingantidepressants.org/forums/topic/28407-koto-citalopram-wd/

 

I was 19 when this all started and now 21. I began taking Escitalopram (Lexapro) 4 years ago. I started at 5mg for 3 months, then 10mg for 6 months, cold turkeyed for 4 months (no symptoms except brain zaps & increased depression), 5mg for 1 month, 10mg for 1 month, 20mg for 4 months, 10mg for 3 months, cold turkeyed for 2 months, 10mg for 3 months, then 20mg for 1 month (this is my last month, check my drug signature for exact dates, but I essentially only took one 10mg and one 5mg for my taper off and consider it another cold turkey). Already off to a rocky start, as I should’ve tapered when lowering/increasing doses and the frequency was dangerous.

 

As to the reason I stopped antidepressants so suddenly, it’s a long story. The months leading up to this incident, my mental health went downhill. I was drinking 2 energy drinks a day, an alcoholic drink a day, taking 2 benadryl at night to sleep, and I was starving myself. I told myself I’d never do drugs, but things were getting desperate. I was offered a THC edible 10mg (I have never touched weed in my life), and I decided to take it. After all, weed is safe, right? 

 

Well, not for me. After a few hours, it hit me and completely made me lose my grasp on reality. I had hallucinations, delusions, and my first ever panic attack(s) which really felt like one non-stop panic attack for 4 hours. My entire body felt like it was on fire. I wanted to scream but I couldn’t feel my voice or even parts of my body. Then some parts of my body felt ice cold and I’d start shivering. It felt like my throat was being crushed, I was convulsing, my face burned, I had a sensation that I could feel all the organs inside my abdomen but my skin was numb, my heart was racing in the 150s, and I was extremely confused. My body was buzzing, and my arms and legs were rigid. I couldn’t move at some points, I could barely breathe, and I was so out of touch I was convinced someone was coming to kill me. I didn’t sleep much or eat for days. When I did sleep, I was jolted awake by panic or nausea. I had panic attacks by the minute for 5 days after. I laid in bed for most days, doing absolutely nothing but inhaling and exhaling. When I was not in bed, I was hunched over a toilet throwing up nothing. I remember standing up and sweat would pour off of my chest and drip onto the floor. I don’t remember many hours of my experience, what I was doing or saying, etc. But the physical sensations are very hard to forget. I thought I was going to die. All in all, it was truly the most traumatic experience in my life and an event I still get incredible flashbacks from, and now I deal with the lingering effects of ptsd nearly every day.

 

I was not thinking clearly at this time, and so I made the choice to quit my antidepressants when this happened. I had determined the recent increase of my Escitalopram dosage from 10mg to 20mg a few weeks prior caused me to have serotonin syndrome given the dramatic reaction I had to something as “safe” as weed. I now know that serotonin syndrome is super rare and would likely happen when combining two or more medications (medications that aren’t commonly used anymore). When I described this to my primary care doctor (leaving out the part where I had THC because it’s illegal for my age), she diagnosed me with serotonin syndrome. Because she didn’t know about the THC and the fact she was the same doctor who constantly changed my SSRI doses, we can assume the serotonin syndrome diagnosis was unlikely. There are cases of TCH-induced toxicity producing similar side effects to serotonin syndrome. Whether I had it or not, it was absolutely hell. Again, I am not a doctor and there is limited research on this.

 

If not serotonin syndrome, then it must’ve just been the result of a “bad trip” on THC. Given the severity of my symptoms, I had my doubts that weed could’ve solely caused that negative of a reaction. I also considered if the symptoms I felt the following days were simply my body’s reaction to a traumatic event. This could also be true, but upon reflection  my body was not healthy, especially with the frequent and large changes of my SSRI dose, alcohol, starvation, etc. The THC edible was the final catalyst of a problem that had been building up after months of cold turkeys and jumping around dosages. I’ve talked to a psychiatrist about this, and although we can’t confirm what exactly triggered this, she agreed that my nervous system was in a fragile state and the THC did not help. Whether my nervous system was destabilized, or if I was just experiencing crippling anxiety from something traumatic, neither made the withdrawal easier.

 

I attempted a taper, but I was entirely too impatient and basically did a cold turkey. The next 2 days, I took 20mg. Then nothing for 3 days, then took 20mg again. Waited 3 days again, took 20mg. Waited 3 days, split pill in ½ (10mg). Waited 3 days, split pill in ¼ (5mg). I went completely off meds in just 2 weeks. I 100% do NOT recommend this. Not only is halfing doses precarious (it is recommended you lower your dose by a 10% reduction or less every month or so), but skipping doses can do more harm than good.

 

I was rushing and I had never experienced anxiety to this extent. I stopped the energy drinks, the allergy medicine, and the alcohol immediately. I was scared; songs, daylight, food, sleep, walking, breathing—ordinary things became a trigger for my anxiety. My fingers moving, taking a shower, blinking a certain way, laughing, voices, a certain blanket, anything could give me the anxiety levels of someone being hunted for sport. At this point, I was praying I would just go into a coma. 

 

Another reason I assume my nervous system was destabilized was because there was no end of the symptoms I had from the edible, and no start of the withdrawal symptoms. Either the stress from that situation and withdrawal symptoms were overlapping, or they came from the same issue, my sensitive nervous system. My life changed overnight, and the following withdrawal felt like a continuation of that experience rather than an isolated incident. That being said, the symptoms came to their first climax 2-3 weeks after discontinuation and then 5 months after.

 

Symptoms for the entire 9 month withdrawal period include: anxiety, panic attacks, hair loss, weight loss, burning (especially in face, ears, mouth), cramping in hands, night sweats, no appetite, dry mouth, auditory hallucinations (buzzing, staticky, ringing, springy sounds), mental fog/confusion/poor memory, dizziness, car sickness, fatigue, irritability, heart racing, palpitations, diarrhea, insomnia & vivid dreams, throat tightness, brain zaps/electric shock sensations, salty/sandpaper/nails on a chalkboard/static sensation in nervous system, bad taste in mouth, popping sensation in skull, joint pain, nausea, bloating, heartburn/acid reflux, irregular menstruation (early, prolonged, & spotting on ovulation), restless legs at night, pacing, akathisia, vision & noise sensitivity, migraines, cold sensitivity, shivering, crying spells, and emotional spirals. 

 

If I could go back, I would stay on antidepressants until speaking with my doctor, or better yet, a licensed psychiatrist. At the time, I thought if I went to a doctor and they found weed in my system I would be taken to jail. But now I know that my health is far more important than a misdemeanor. I was also under the impression that I wouldn’t have withdrawals. To get on antidepressants, all I had to do was tell my doctor I had depression and she prescribed them no questions asked. There was no guidance. My doctor was constantly changing my dosages so I didn’t take my antidepressants seriously. I thought this was medication you took when you felt depressed, and then stopped when you’re happy. My biggest regret is my ignorance. 

 

Nonetheless, here I was jumping from one traumatic event to the next. To my knowledge weed cannot kill you, however I was so high that I was entirely convinced it would. My body thinks I was in severe danger, and it's still reacting to that event in a way that's disproportionate to reality. Having the withdrawal directly follow that, and knowing several of the withdrawal symptoms mimic the very ones I had while I was high, it felt like every single second after I was reliving that horrific day. What could’ve been a single traumatizing event extended to several months of fear. I am devastated that a split second decision I made had completely flipped my world upside down.

 

4 weeks in, I had the sensation my body was on “backwards.” I struggled to walk in a straight line, and the static sensation/buzzing in my ears was at an all time high. This lasted for 3 days. I had a difficult time processing what people were saying to me. I could hear them, but I didn’t always understand them until it was repeated or written down. Something to take note of, roughly 1 month after I stopped taking antidepressants, I got covid. I was already experiencing withdrawal symptoms, and they became amplified during this time. Some of my symptoms from this point on could be attributed to long covid and some from withdrawals. However, I think it’s most likely that both forces worked together, as covid significantly affects the nervous system. 

 

2 months after, I started having chest pain and my heart rate was in the 110s. I went to the instacare and bloodwork & EKG came back normal (except low potassium). They prescribed me 25mg of Hydroxyzine for anxiety, but it just made me tired and gave me terrible sleep paralysis. After a few days, the pain got worse and I went to the ER. EKG was normal and they gave me a stomach numbing liquid for heartburn. It did not work. After a few days, the pain went away and I suspect it was my anxiety and/or a hypersensitive nervous system. A week after, I got my blood drawn for a checkup and everything was normal. My doctor was skeptical that my symptoms would last this long. She did not believe in antidepressant withdrawal that lasted more than 2 weeks (why are people like this allowed to give out psychiatric drugs like candy). I had a brain CT scan and an EEG, everything came back normal. 

 

The 3 month mark is when I started experiencing weirder physical symptoms. Once or twice a day, I’d get an electrical sensation in my body. It felt like my brain was shivering and my joints were rusty. I had this and a strange “flicking” sensation in my brain that comes and goes, usually triggered by moving my head too fast, a pounding heart, or blinking. You know when you yawn and you get that prickly sound in your ears for a split second? It’s like that prickly noise always. Like a zipper in my brain, or if there was popcorn popping in my skull. My spine had a bubbly sensation running through it. One day I experienced non-stop flicks every second. For some reason, it happened a lot in the shower. I was just finally starting to be able to enjoy music, but then the flicks happened. I don’t know if this makes sense, but the flicks are very similar to beats in a song, and it physically hurt my head to listen to music.

 

5 months in, I was still experiencing the “flicking,” but not as often. This was when things got unbearable. Not only did everything start burning, but my hearing, vision, smell, and taste got extremely sensitive. My eyes stung, I had a taste in my mouth like it was full of boiling printer ink, it felt like my brain was buzzing and my stomach vibrating, my throat felt like it was being grated by a cheese grater, my head shuttered when I turned it, my body tingled and felt like it was covered in sunburns, my insides felt salty, my heart felt like it was in a bucket of sharp icicles, my hands were cold and sweaty, breathing through my nose burned, it felt like hot steam was coming out of my ears, silence was inescapably loud. I was aware of every physical sensation of my body and I could hear every blink of my eyes.

 

During this time, I was terrified of making things “worse.” I did not take medication, supplements, or even something as simple as allergy meds. I found this website, and decided to try magnesium and fish oil (separately), but didn’t notice a change. I attempted drinking a small amount of alcohol, but it left me with more panic attacks and insomnia. Similarly I could not drink caffeine. I noticed some foods also exacerbated my indigestion, joint pain, tingles/pins & needles, and heart rate. Foods that were processed, acidic, or excessive in sugar made me feel unusually sick. There was an entire week in which I ate nothing but sliced bread, and maybe butter if I was feeling adventurous. 

 

For a few days, I wore earplugs, a face mask, chewed gum, no perfume, a humidifier, sat in the dark, and basically did everything I could to desensitize myself. I had short migraines that felt like brain freezes. The burning was the worst, like my brain was on fire but also a part of it missing. If you can imagine someone lighting a match and sticking it in your ear, that’s what it felt like. I clawed at my cheeks in hopes the scratch marks would distract from the burning. Every day was a real time nightmare. These symptoms lasted about 3 months, coming in suddenly but fading out gradually. I went to the instacare during this time for the hyperesthesia, but they wrote it off as a panic attack and sent me home.

 

Anxiety gnawed on my nerves like acid and I was prone to having several panic attacks each day. I struggled listening to music, watching movies, going in public, driving, taking a deep breath, laying down, drinking caffeine, eating what I wanted, daydreaming, reading, smelling something sweet, cleaning, showering, brushing my teeth, etc. Everything I did became muddled with paranoia that it was a potential panic attack or withdrawal symptom. I tried birth control since I tend to be more stressed when menstruating and I’ve taken it before, but it made my anxiety and hormones wig out. 

 

Sometimes I can handle my fears and say “I have no control over this and that’s okay.” But sometimes it just gets too loud. My thoughts became a series of terrors that made me so anxious I would twitch. Occasionally my train of thought randomly stopped and I started staring into space, unable to focus on anything. The brain fog was unreal and I’d forget what I was doing. I only noticed I’d been frozen when my eyes got watery from not blinking. It seemed as if my mind was creating some sort of buffer to help me deal with the anxious thoughts that were causing me so much trouble. Like I had reached my stress limit and those black outs were a way to avoid dealing with the months of pain I've endured. 

 

I experienced the windows and waves pattern of stabilization, but I felt like mine was a bit more intricate. Each symptom had an individual healing pattern. I might have digestive issues for 3 days, have pins and needles sensation for 1 week, have migraines for a few hours, and they’d overlap, come back, change intensity, etc. Each day was sort of a guessing game on which symptom cocktail I’d get. I would say there were windows in which I got symptoms that were “easier” to handle, but I didn’t sense I was becoming closer to normal. However, the waves became less spontaneous and at the tailend of my recovery, the symptoms that remained were consistent enough that I knew what to expect.

 

Suddenly, I had a window of absolutely nothing. It lasted only a few hours, which albeit is not a long time, but I finally got my head above water. Over the next few weeks, I experienced windows of peace more frequently. Eventually the days got easier. It was impossible to notice at first because I was consumed by what was happening to me right that moment. Looking back, I realized how much things had changed. Instead of asking myself “why am I always in pain?” I asked “am I in pain today?” My recovery went very quickly towards the end, as just one month prior I had been going through hellish burning sensations. I haven’t seen many people talk about burning to the extent that I have, and I’m guessing it’s either some form of long covid or nerve healing. Sometimes I could feel painful/electrical sensations in places I didn't think I was capable of feeling, like all of my intestines or my heart or every inch of my throat, etc. I told myself this, that the pain I felt meant that I was healing, and because nerves are all throughout the body it made sense. I found the pain in my legs/arms went away when I took a hot bath, and surmised it diluted the effects of my overstimulated nerves.

 

The majority of my withdrawal symptoms faded out after 8 months, although still I had a small amount of symptoms, notably the brain “flicks,” migraines, mild burning, and overactive senses. I was relieved because the ER doctor told me it would take a year. It felt good, and I had this internal expectation that my life would go back to normal. I tried so hard to do the things I couldn’t in the height of my withdrawal. But I was still unable to because of my anxiety. This whole time I treated anxiety as another symptom rather than a condition I developed from my circumstances. I thought it would just go away in time, but it was persistent. I became increasingly frustrated with myself and quickly lost my emotional bandwidth. 8 months later, I was still having panic attacks that started from a THC edible.

 

Before this all happened, I had anxiety but there was always a clear reason for it. I got nervous and shaky when speaking in public or at the dentist. I worried about school and getting a job. But this anxiety was different and I couldn’t navigate through it. There was an intense primal emotion that took over every fiber of my being making my heart race and my body tremble. I was overcome with a feeling of being utterly powerless, knowing that there was a predator lurking nearby ready to pounce at any moment. Every sound and movement around me felt amplified, my senses heightened and on high alert constantly scanning my surroundings for signs of danger. This non-stop paranoia made me exhausted. I suffered a physical crushing weight on my chest and lump in my throat that made it hard to breathe. I was trapped with no escape route and my survival instinct kicked in urging me to flee. But no matter how far I tried to run, it clung like a shadow. It was more than an emotion, it's was a matter of life and death, the driving force that keeps an animal alert and alive. I simply wasn’t myself anymore. Stress ate away at my life.

 

Prolonged antidepressant withdrawal isn’t talked about much, and many doctors dismiss the idea of “withdrawal” altogether. My doctor told me (3 months into withdrawal) that everything I experienced from this point was anxiety. Anxiety creates stress levels that are poison to the body and replicate a lot of the symptoms I’ve mentioned. But with the hindsight as someone who is recovered from withdrawal and still experiences roughly the same amount of anxiety from time to time, that just didn’t make sense. During the withdrawal period my symptoms were severe and more complex. My symptoms also weren’t affected by the amount of anxiety I had at certain periods. Whether someone wants to label it as withdrawal or anxiety or long covid or trauma; labels are just words. What mattered is that I wasn’t capable of getting through it on my own. I felt more pain than I could bear, and my doctor essentially told me it was all in my head at this point. 

 

Combined with the trauma from something as common as weed, I felt like a complete fraud. I was invisibly bleeding. Nobody knew what was happening and I couldn’t put my pain into words. I told myself it wouldn't matter if I talked about what I was going through, because I thought nobody would take me seriously. I had to sit with the fact that the pain is there and nothing can take it away, no matter what I could do, “only time can heal” me. I was trapped inside of my mind by anxiety and trapped inside of my body by withdrawals. I had just gotten home from a vacation with my friend and I was beyond frustrated with myself. I was so nervous the entire time, I acted strange and had several panic attacks on the plane ride home. I thought “this is my life now.” Even though I had managed to overcome most of the withdrawal, I couldn’t get back what I lost.

 

I felt like my mind was permanently damaged. The pain, anxiety, and obsessive thoughts outweighed the brief moments of relief. And in that relief, I had constant fear that painful withdrawals would return. I feel like my depression wanted me dead at all costs, but my anxiety wanted me alive at all costs, and I'm just stuck in the middle of it all like the rope in a tug of war. I was eternally doomed and decided it would be easier to take my life. I talked about this with my parents, and I was taken to the ER. They gave me Ativan and I didn’t notice a change in my anxiety but it did make me sleepy. Once they confirmed I was medically okay, I was sent to a psychiatric ward.

 

Here I was able to talk to a psychiatrist about my whole situation. She said being off antidepressants could be the reason my anxiety is so bad, so she put me on Effexor 3.5mg. After about 2 hours, I had an adverse reaction. The “flicking” sensation in my brain returned. Moving my eyes, blinking, and heart beats all felt like a pop in my skull. It was tremendously uncomfortable and triggered several panic attacks. My doctor then decided I was in a too sensitive state to try serotonin medications. We then tried Lamotrigine 25mg for anxiety/panic disorder. I immediately had a panic attack thinking it would cause the flicks again, but it didn’t. After a few hours I felt strange. It was like I could feel it pushing down my emotions and it made me physically uncomfortable. I was “too relaxed.” However, I noticed the weight on my chest and lump in my throat that had been ever present for 8 months went away. I felt the closest to being anxiety free since this started and for the first time, hopeful.

 

She said the dose might’ve been too high, so she prescribed me Lamotrigine 12.5mg. I was sent home and set up with a therapist and new psychiatrist. I took the Lamotrigine 12.5mg but felt the exact same as 25mg. I tried taking 6.25mg, but it was still the same. It made me feel equally uncomfortable as relieved, so I decided I’d rather not take it (the psychiatrist said I could take it as needed). I waited until my appointment with the new psychiatrist, and he said Lamotrigine was probably not best for me.

 

I was prescribed Clonidine 0.05mg, taken as needed. I was afraid of medication and had several panic attacks before I could muster up the courage to take this one. Not only did the weight on my chest disappear, but also my fixation on the sensations in my body. I was finally physically relaxed, no longer overstimulated. It made me sleepy, but unlike Hydroxyzine where it felt like I hadn’t slept in 3 days, this made me feel like I was bundled up drinking hot chocolate. I still felt the anxiety mentally, but the physical symptoms are what made it unmanageable. Now that I had a safety net, I felt like I was given a chance to handle my fears rather than be overcome by them. Since the first week of taking them, I haven’t felt the need to take Clonidine or any other medication for an entire year. I am still wary of psychiatric drugs, and this medication is no different. It’s a backup plan for the backup plan, and I think the peace of mind gets me through it. 

 

In May 2023 (9 months after discontinuation), I became withdrawal free!!!  Anxiety continues to be something I struggle with, but through therapy and time it has become something I can manage without medication. I constantly had this feeling I was going to die, go insane, or dissociate to a point of no return. All of these thoughts were perpetuated by anxiety and would never actually happen. The more I fed into it, the more it grew. I reminded myself though I felt like I was “losing my mind,” I had the ability to acknowledge that something was wrong, and therefore had proof I was still in control. I experienced these “mental panic attacks” along with the regular panic attacks, in which there weren’t many physical symptoms, but mentally my mind was going in loops of fears and intrusive thoughts. While a panic attack is incredibly worse (for me), it at the very least gave me an outlet for my anxiety. When it became all in my head, it was like all build up and no release. 

 

The most helpful and easiest thing was writing it down. I made a list of all the things that could go wrong, then wrote how I would get through each situation. It’s simple, but it really helped my subconscious chill out. I think when we see anxiety as something we need to heal ourselves from, we make our emotions our enemies; in extension, we are making ourselves an enemy. As soon as you do that, you are fighting a battle you cannot win. Something helpful I learned when I have scary flashbacks, I think about how I would help myself in that situation. I make a mental picture of someone giving me something to cure me, and imagine all my fear instantly goes away and I am normal again. Trying to alter that trauma into something positive has made it less scary to face.

 

Therapy has helped me be gentler to myself and lessen my imposter syndrome. With my withdrawals gone and my anxiety becoming manageable, I am happy to say that I moved out of my parents house, got a supportive boyfriend, got a new car, a new job, and just recently moved into a house together, all things that I thought I’d never have the ability to achieve. My life feels like a movie and I just had to go through the storm first to get there.

 

It has now been 1 year free of withdrawals!!! It means so much that I am able to write this, the resources and kind souls on this website have helped with my journey massively. When I opened up to my friends about my condition, they became the foundation of my resilience. People who I thought wouldn’t care if I was gone reached out to me, and I realize I have people to live for. The world can feel unbelievably scary and unfair, but I think the universe doesn’t throw anything your way that you can’t handle. Wrap yourself in a hug, enjoy good food, and watch cute puppy videos on Youtube. 

Edited May 20 by Erimus
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[Erimus]

Thanks for coming back and sharing your story of success. The community here will benefit from another tale of recover.

[Ariel]

Hi @koto

That's quite an ordeal to go through!

Congratulations on making it through to the other side!

Thank you for coming back to share your success story. 

It's wonderful to hear you've recovered and are enjoying a full, healthy life. 

Wishing you all good things <3

Ariel

 

[HollowPRS]

Thank you so much for writing this @koto!  I’m currently 5 months off of Lexapro after a cold turkey stop and it’s been brutal. 
 

Question for you, did you have depression/lack of interest during your withdrawal period? This symptom was not present for me before starting Lexapro, which makes me think it HAS to be one of the many parts of my withdrawal symptoms. 

 

Again, thank you for sharing your success story! It’s very much needed for people like me 😭. 

 

 

[koto]

@HollowPRS Hello, thank you for your question! 

 

Yes, I experienced both depression and a lack of interest during my withdrawal period and throughout my life. However, I felt as if my depression and lack of interest were amplified during my withdrawal. Often I was unable to get out of bed or feed myself. There was no motivation to do anything. I felt like I was being held in stasis, like I wasn't truly conscious or alive, simply going through the motions. My depression during that time was crippling and I couldn't help but think of my own life as meaningless.

 

Every recovery process is different and although it is not pleasant to go through these things, they will get better in time, and possibly faster if you seek therapy. That is not to say these things will always vanish miraculously. I made a mistake of thinking my newfound anxiety was a symptom of withdrawal. If your depression or lack of interest is becoming something unmanageable, I advise asking for help.
 

All that being said, I am glad to say that I no longer feel depressed or numb, especially not to the extent in my withdrawal period. In fact I am happier now than I have ever been in my life even without medication!

 

1 hour ago, HollowPRS said:

Thank you so much for writing this @koto!  I’m currently 5 months off of Lexapro after a cold turkey stop and it’s been brutal. 
 

Question for you, did you have depression/lack of interest during your withdrawal period? This symptom was not present for me before starting Lexapro, which makes me think it HAS to be one of the many parts of my withdrawal symptoms. 

 

Again, thank you for sharing your success story! It’s very much needed for people like me 😭.