Cruchot: From a good life to disability - my Lexapro-kindling-Lyrica story

[Cruchot]

Hello everybody, this is my first post here, and I’ve decided to share my story.

 

My name is Andre, I’m a 47-year-old male and a top manager in the industrial sector. Well, actually, I’m not anymore. I am now neurologically and mentally disabled, which led to my being put on disability. Why? Because I took psychiatric drugs.

 

Here is my story:

I was first put on an SSRI (sertraline 100mg) in 2001, when I was 23, after having a panic attack in the shower during a stressful period of my life. The diagnosis was Generalized Anxiety Disorder (GAD). I stayed on sertraline for 15 years, enduring all the side effects—emotional numbness, restless leg syndrome, weight gain, libido close to zero, etc. In those 15 years, I only saw my psychiatrist three times; he just kept renewing the prescription.

 

Based on my sister’s positive experience with Lexapro (escitalopram), I visited my psychiatrist in 2016 and asked to switch. He prescribed 20mg of escitalopram, and it worked well for me. However, I gained even more weight, experienced more numbness, slept 10 hours a day, and eventually developed tinnitus (which I strongly believe was caused by the drug).

 

In April 2022, I decided to try to lose some of that extra weight and wondered if I still needed the antidepressant. I hadn’t had a panic attack since 2001, and I wasn’t under any significant stress. So, I “tapered” from 20mg to 0mg in just two weeks.

 

A few months later, withdrawal hit me hard—paresthesia, disrupted sleep, low mood, and skin issues among others. I realized I had tapered off too quickly and, on September 20th, 2022, reinstated 10mg.

 

On October 5th, 2022, I woke up at 1 AM with screaming tinnitus, a racing heart, and blurry vision. It felt like a mini-seizure. Terrified, I went to my psychiatrist after many years and explained what had happened, along with the fast taper and adverse reaction after reinstating. He told me to increase the dose to 20mg and “push through” it.

 

So, I raised the dose to 20mg, and soon after, my blood pressure spiked to 150/100, my heart rate was over 100 bpm, I was sweating, couldn’t sleep, and my mind was racing like never before. I pushed through for a month, but more symptoms came—red, sore eyes, eczema, cystic acne, and head pressure. I contacted my psychiatrist again, explaining the situation, and he advised me to reduce the dose to 15mg. No change. I lost trust in him and reduced the dose on my own—first to 10mg, then 5mg, then 0mg, all within November 2022.

 

By this point, my symptoms were unbearable. I was living inside my head, constantly searching for answers online. I slept only 0-4 hours a night, my heart raced as if I were running a marathon, and I could no longer function. I had to stop working and went on sick leave.

 

I visited the ER several times and was prescribed beta-blockers and clonazepam. I took the beta-blocker a few times and used clonazepam only occasionally in low doses, fearing dependence. Later that month, I considered being admitted to a psychiatric ward. A young doctor there listened to my story and she suggested I manage things at home, prescribing me pregabalin (2x75mg), trazodone (150mg), promethazine (25mg), and hydroxyzine (3x25mg). I started to take them all right away.

 

By December 2022, my condition was still horrible, and I started having intense suicidal thoughts. A few days before Christmas Eve, I wrote my will and went back to see the same doctor. She was busy, but I was desperate, so I offered her $1,000 (a delicate issue since healthcare is free in my country). She accepted and advised me to increase trazodone to 300mg and pregabalin to 2x150mg, keeping the other medications the same. This only worsened my symptoms—muscle pain, dizziness, extreme weakness, shortness of breath, burning skin, and more.

 

I realized I needed a new psychiatrist, which I managed to find in January 2023. At that point, I was still experiencing many symptoms—poor mood, severe sleep issues, and physical weakness. Fortunately, my mind had calmed a bit, but my memory and cognitive performance were shot. I used to have an excellent memory and quick reaction times, but none of that is true anymore.

 

Between January and May 2023, I stabilized a little, got off hydroxyzine and promethazine, and had fewer mental symptoms, though I still dealt with depression, anxiety, and neurological issues. I spent hours researching pregabalin withdrawal, which made me both scared and determined to stop it. Unfortunately, I didn’t research tapering enough. My psychiatrist recommended a quick three-week taper, going from 2x150mg to 0mg in May 2023.

 

The acute withdrawal hit me hard—agitation, sleepless nights, burning skin, elevated heart rate—and about a month later, the post-acute withdrawal began: panic attacks, muscle pain, GI issues, racing mind and heart, and poor sleep. By June 2023, I felt like I was back where I started in November 2022. Thankfully, I no longer had suicidal thoughts.

 

Throughout this time, I relied on beta-blockers, promethazine, and occasionally oxazepam to cope. Still on sick leave for several months, I lost my job in May 2023. My psychiatrist acknowledged the pregabalin withdrawal but emphasized that it was “very uncommon.” He kept me on sick leave.

 

Since September 2023, I’ve started experiencing some short windows of relief, but the waves are long and filled with unpleasant symptoms. I continue to educate myself on psychiatric drugs, adverse reactions, central nervous system issues, withdrawals, PAWS, BIND, kindling, and tapering methods. I now know more about these topics than most psychiatrists in my country.

 

Given that nobody truly knows whether staying on psychiatric drugs slows down or complicates CNS healing, I’ve decided to taper off my last drug—trazodone, 300mg. I started tapering in January 2024. Initially, I tried a quick taper—reducing by 50mg every two weeks. However, after a panic attack while driving through a tunnel, I realized I needed to slow down. The attack was so severe I had to stop the car immediately  to calm down which took a long time. After that, I changed my taper plan to 25mg reductions every four weeks.

 

By mid-June 2024, I had reduced trazodone from 100mg to 75mg. That was a 25% reduction, not following the hyperbolic method, and it triggered a lot of symptoms—racing thoughts, muscle pain, and worse sleep. So, I slowed down again and made a smaller reduction by 12.5mg, down to 62.5mg on August 1st, 2024. This brought no negative effects, so I continued to reduce to 50mg by August 31st. However, I’ve been in a wave since then that has lasted almost six weeks. It seems the wave might have started a few days before that reduction, though.

 

Since I’ve been on sick leave for longer than is legally allowed, my psychiatrist recommended I apply for disability, which was approved by the authorities in July 2024. I truly feel neurologically and mentally disabled. I lost my job, many friends, and nearly my life.

 

As I haven’t fully healed from the escitalopram and/or pregabalin withdrawals and continue to experience waves and windows, it’s hard to identify exactly what is causing my symptoms. My CNS has never fully stabilized, and even mild stressors or attempts at exercise make my symptoms worse. Throughout my life, I drank alcohol only occasionally, and I haven’t had a drink since October 2022. I don’t smoke or take any medications for other health issues. A good night’s sleep and a great mood used to be normal for me. Now, I haven’t experienced either in almost two years, and I have no idea what comes next.

 

I’m not just sharing my story but also looking for advice from others who have been through similar experiences or who know enough about this topic to offer guidance. This is a fantastic community, and I’m grateful to be part of it.

 

One of my biggest dilemmas now is how to get off trazodone (50mg) in my current state.

 

If I follow the hyperbolic 10% reduction method, it could take me three years to get down to 1mg, and I’m not sure I can handle that. To explain how I see that: There is not any guarantee that this approach will improve my current state or prevent further withdrawal, ie. I could waste 3 more years tapering, feeling still mostly bad during that time and then feeling bad another few to several months or years healing without drugs and maybe feeling OK one day after 5 years in total or even later.

 

My original goal was to taper off by the end of this year—from 50mg to 37.5mg, then 25mg, then 12.5mg, and maybe even 6.25mg before jumping off completely. Then I would give my brain a drug-free space to heal completely, I hope it is still capable of doing that, and I could be fine in next 2 years hopefully, maybe? I’ve read that trazodone doesn’t usually cause severe withdrawal, and many people are able to stop around 25-50mg without significant issues. Unfortunately, I don’t have access to the liquid version of trazodone, but I do have 150mg and 75mg tablets that I can split into 50mg and 25mg doses. I’ve also purchased a scale capable of weighing with 0.001g precision.

 

Does anyone have any suggestions on how to proceed from here?

 

Sorry for the long post, but I wanted to provide as much detail as possible.

THANK YOU.

 

[LotusRising]

@Cruchot

 

Welcome to SA,

 

We do not recommend tapering in a destabilized state. It sounds like your central nervous system is very dysregulated from many medication switches and fast tapers.

 

On 10/8/2024 at 7:23 AM, Cruchot said:

I’ve read that trazodone doesn’t usually cause severe withdrawal, and many people are able to stop around 25-50mg without significant issues.

This is not what we've seen here and we recommend going as low as possible.

 

Have you read this? Why taper by 10%

 

Here's the information we have on tapering trazodone:

 

 

 

Please let us know if you have further questions.

 

Edited October 14, 2024 by LotusRising

[Cruchot]

Hello Lotus,

Thank you for your reply.

I am afraid you are right about the CNS destabilization. In the meantime, I read many other posts here and it helped me to understand a lot of things. I became hypersensitive in a way that I cannot drink coffee, alcohol, excercise and if I catch an ordinary virus I feel like I would die, I stop sleeping and I generally feel very low.

Although I really do not like it, I havent touched the dose since the last reduction in August. I still suffer from unpleasant wired feeling, burning, very bad sleep, low mood, muscle pain, brain fog and others. But it is much better than last year... I will try to wait more and more to see some improvements in my condition and then I would cut around 10%. I also read here from one user who tapered trazodone that she was OK going quite quickly to 15-20mg, but then she had to go very slowly. I also felt that 4 weeks between reductions were on edge for me so I sometimes increased to 5-6 weeks and it was better. 

It seems I have a long long way ahead...I hope I will make it.

Thanks.

[Sveta81]

Hi Chruchot,

 

I read your story, and just wanted to say that I'm very sorry what has happened to you. I hope you will find some peace and recovery with the help of SA. You are not alone. Escitalopram is one terribly strong SSRI, and I see so many people on this forum struggling with getting off of it. I have been tapering it myself in years, doing it very slow, and unfortunately find myself on sick leave as well and still haven't come off the drug completely. I functioned very well before this and loved my job, friends and sports etc.

 

Take care and hang in there.