TinyDancer: Withdrawal symptoms since tapering off escitalopram/Lexapro in Jan 2021

[TinyDancer]

Summary prior to Lexapro:
I was diagnosed with depression when I was 16 in 1999. It's hard to remember what I was going through then, but I know I would have major mood swings and get very emotional and sad. I started seeing a therapist. I was prescribed Zoloft, I think it was 10mg. I don't remember my full prescription history, but I believe I stayed on Zoloft until at least 2006. I moved from New Hampshire to San Francisco in 2005 and started seeing a therapist there. I didn't think I needed anti-depressants anymore and went off of Zoloft. I don't remember any kind of tapering, or guidance/warnings about going off Zoloft. I didn't have any issues quitting.

I remember having depression symptoms during my period and my therapist recommended taking Prozac only during my period. I believe this was in 2006 or 2007. It helped, but I felt emotionally numb.

 

Lexapro:
I decided to try anti-depressants again but I wanted to try something different. My doctor recommended Lexapro. I believe this was in 2007 or 2008. Lexapro was an easy drug to take. I didn't have any side effects. Once, Kaiser tried to push me to generic escitalopram and I experienced issues with mood swings. I don't remember the exact symptoms but I know I contacted my doctor within a few days and demanded brand name Lexapro again. Other than that, I stayed on 20mg Lexapro with little thought to what/how it was treating my depression. There was one point where I visited my family in New Hampshire and didn't pack enough Lexapro. I skipped one day and figured I would do every other day to stretch the pills. I got dizzy and had brain zaps within a day. I looked this up online and learned that you can't just go off Lexapro. I kept that in mind and planned my refills better from that point on.

 

Tapering off:
In August 2020 Kaiser's pharmacy informed me that they would no longer carry Lexapro brand name starting in September, and they would only offer generic Escitalopram. I don't think this is a problem for most people but I had a bad reaction when I tried generic before and didn't want to go down that path again. I had also been questioning how long I should stay on anti-depressants. I was 38 and was a completely different person than when I was first prescribed at 16. I have a supportive partner who encourages me to seek alternative methods to managing my depression. I was particularly interested in supplements like fish oil because they have other health benefits. It felt hopeful to know that through mindfulness techniques and supplements I could manage my depression naturally and add additional health benefits.

 

I emailed my doctor and asked for a tapering recommendation. Her assistant said to go from 20mg to 10mg for 2 weeks and then go off. That sounded entirely naive to me knowing what I experienced when I skipped one day by accident years earlier. I did research and most articles were vague. I subscribed to Harvard Health Review and they had a more thorough article with gradual tapering guidelines. I choose to go from 20 to 15, 10, 5 with 4 weeks in between. I started the taper in September and completed just after Christmas 2020. With about 4 weeks in between dosage changes I felt some brain zaps and dizziness, but nothing that impacted my day to day activities and work.

 

Full stop:
In January 2021 I felt pretty good about stopping the pills (I was on 5mg at that point). I read that you could experience more extreme symptoms after 5 days if you didn’t taper long enough. At day 5 all the withdrawal symptoms started and continued for roughly 4 months. I won’t get into full details because I think the symptoms are easier to find online now, but the brain zaps were frequent throughout the day. I was dizzy, and most days I worked on my couch because I couldn’t handle being vertical. My balance wasn’t so bad that I would fall, but I would kind of lean side to side going down hallways. Other physical symptoms were headaches, completely random indigestion that didn’t coincide with my very consistent diet, shaky hands, insomnia, and very random and quick flu/cold like symptoms like congestion.

 

The brain zaps and dizziness made work very challenging. I manage a software development firm and am on client calls most of the day. What was far worse were waves of anxiety. I’ve never felt anxiety before, this was completely new to me. My mind was racing and I was constantly worried about my partner dying (he has perfect health) and other nonsense. I felt like I was on then verge of mania because I couldn’t handle even the smallest amount of stress. A stressful work event would have me clenching my teeth, holding back a scream, and pounding my fists. I’m the cool and calm one at work so this was so foreign to me and I was always scared I would lose my temper during a meeting. I had panic attacks, which I’ve never experienced before. They were prompted by seemingly nothing.

 

I had a very hard time socializing. If someone asked how I was I thought I would burst into tears. I stopped drinking because I read that it could help. I told my closest friends so they would understand why I was withdrawing. I had a hard time talking about myself because I was really just trying to hang on. I didn’t have any other news. I couldn’t help out around the house because of the dizziness, and trying to cook would stress me out and make me agitated. My partner picked up the chores and I was usually lying on the couch.

I don’t remember when the symptoms stopped because they kind of morphed instead of really going away, but I think the physical symptoms like brain zaps and dizziness started to lift in April and probably stopped in May 2021. I believe the initial withdrawal period was 4-5 months.

 

I spoke with a Kaiser psychiatrist towards the end of this period and told him that my symptoms felt different. He cut me off and told me that you will not experience new symptoms when you go off SSRI’s. He told me that my depression could have evolved over the years and I didn’t know because I was on anti-depressants. I asked him when this will end and he said it is so rare that they don’t know, but it should really only be a few weeks (I was already into 4 months). Out of desperation I asked him to just tell me if it isn’t possible to go off Lexapro, do I just need to accept that and go back on. I told him that I’ve read countless forums where people describe this problem and I never see a follow up that they successfully finished the withdrawal. He downplayed forums and suggested that people probably needed to be on the SSRI’s and ultimately went back on because of their depression, but not because of the drug. I told him it was a crime that they don’t educate people about this before prescribing these medications.

 

Post-acute withdrawal:

As the physical withdrawal symptoms went away in May 2021 I was prepared to face my old depression symptoms, and I was armed with reading materials about mindfulness techniques and supplements like vitamins and fish oil. I definitely had some low days where I was sad and it was challenging to find motivation. But I also felt different because the anxiety was still around. It wasn’t as extreme as before (I didn’t have to worry about panic attacks), but I had lots of worrying and my mind was racing in addition to the feelings of sadness and inadequacy.

 

I started taking fish oil supplements (1200mg EPA + 900mg DHA)in June/July 2021. My anxiety got worse and I wasn’t sleeping well. It was affecting work so I decided to just take it during my period when my symptoms are stronger. But it was still too much and I tried another brand with a lower dose. Same issues. I give up and try SAM-e, a supplement that should also help depression. I take 400mg a day and I just have light anxiety symptoms. I increased to 2 pills a day/800mg during my period and I got indigestion so I backed down to 400mg. Big mistake - I had insomnia for 2 days. Why am I so sensitive to these supplements when it seems like everyone else takes them easily? During a sleepless night I am doing online research and find Adele Framer’s research article: https://journals.sagepub.com/doi/10.1177/2045125320980573?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub 0pubmed

 

I cry while reading it because it’s the first time I see in writing that people are experiencing new symptoms after discontinuing a SSRI. That’s exactly what is going on with me right now. At the time of writing this it has been 11 months since I stopped Lexapro and I don’t know if I am treating depression or anxiety. I’m staying on SAM-e  400mg a day because I’m petrified to make any changes without a professional guiding me. I’m taking a B complex/folate/magnesium vitamin luckily without issue. I have a couple good days and then a breakdown that is mixed with depression and anxiety.

 

My mind races and I don’t sleep as deeply now. I’ve stopped drinking, except for a couple drinks a month, and I eat as many veggies as I can. I have irrational fears like my partner is going to die still and I’m guaranteed to have some kind of emotional breakdown before my period. I can’t handle the level of stress that I used to, and have a hard time multi tasking at work because I get agitated and experience brain fog. Suicidal thoughts make their way into my consciousness routinely, and on bad days I don’t think I can go on any further. On good days I worry about when the next bad day will be.

 

I read this article by Adele and cried again because I’m 11 months in and she went 11 years: https://journals.sagepub.com/doi/full/10.1177/2045125321991274. It feels hopeless, but my only motivation is to find a doctor that will guide me through this. I’m here on this forum to find a doctor that will treat the withdrawal symptoms for however long this is going to take. I can’t do this by myself.

[Kiasofia]

Welcome @TinyDancer

I'm so sorry for all you have gone through and are going through, but relieved you have found us. Thank you for sharing your story. You will find it is unfortunately a very typical story.

 

Most medical professionals have a poor understanding of how these drugs affect people. I found this post helpful to understand how these drugs actually work and why healing takes time:

How Psychiatric Drugs Remodel Your Brain

 

When we recover, there are times of feeling OK mixed in with times of feeling bad.  This is called windows and waves.

The Windows and Waves Pattern of Stabilization

 

About withdrawal:

What is withdrawal syndrome?

Dr. Joseph Glenmullen's withdrawal symptom checklist

 

As you will have read in the paper, according to medical knowledge, reinstatement is the only way to alleviate withdrawal. The only other alternative is to try and wait out the symptoms and manage as best you can until your central nervous system returns to homeostasis.  Reinstatement should ideally be within 3 months of quitting. After this it is more uncertain if it should be done or not. Here is some information about reinstatement: 

About reinstating and stabilizing to stop withdrawal symptoms

 

Good advice for treating depression and anxiety naturally, doesn't always apply to withdrawal induced depression and anxiety. Your central nervous system (CNS) has become sensitized from psychiatric drug use and can react unpredictably. Therefore be careful with supplements. It's best to cut out alcohol completely. Some need to cut out/reduce coffee and nicotine as well.

Important topics about tests, supplements, treatments, diet

 

Here is our symptoms and self care section, you may find some useful ideas to help manage symptoms as you recover.

Symptoms and self care topics

 

I've given you quite a bit of information here.  Please read through it, and think about it, and we will take it from there. In the meantime, take care of yourself, and take heart. We in this forum have been through this, and we understand first hand the pain and discomfort you are going through. Please know that the brain is amazing in it's healing abilities. It takes time, but healing can and will happen. 

 

This is your Introductory topic, where you can ask questions and connect with other members.  If you need any advice specific to you and your situation, please ask it here. Otherwise, feel free to join discussions on other threads. To make sure I or someone sees your question, tag them by writing @ and then start typing their username. A drop down menu will appear. Click on their username and it will turn blue.

 

Please stay in touch and let us know how you are doing.

Edited November 26, 2021 by Kiasofia

[TinyDancer]

Hi @Kiasofia,

 

I just wanted to thank you so much for taking the time to respond and for putting energy into supporting others. It makes me feel like I can get through another day just knowing there are people that care in this forum.

 

I read through a lot of posts, thank you. Unfortunately I'm stuck on SAM-e for the moment but I am looking for an experienced doctor who can guide me through a taper. And if Escitalopram or alternative reinstatement is necessary I am open to it. I just want to find a doctor I trust and then I will follow their guidance. My nervous system is so sensitive that I don't want to try to do it on my own anymore.

 

Thank you again.

[ChessieCat]

16 minutes ago, TinyDancer said:

I'm stuck on SAM-e for the moment

 

Please add this to your drug signature.

[TinyDancer]

14 minutes ago, ChessieCat said:

 

Please add this to your drug signature.

 

Thank you for the reminder. I added it.

[TinyDancer]

Hi,

 

I have been on SAM-e for almost a year now (started in August 2021). I don't have any side effects anymore. My anxiety has become more mild and my depression is quite manageable. I have shorter waves now.

 

I want to taper off SAM-e because I always knew that it could also have withdrawals. Plus, I never intended to stay on SAM-e. I always wanted to take Fish Oil once I was clear of SSRI discontinuation symptoms. I had actually read that SAM-e loses its effectiveness after a year or two.

 

Is this a good time to start tapering? If so, should I try fish oil now in a low dose to see if I react better this time? Then maybe I will have some underlying support from fish oil while I am tapering? Or should I not mix? I've had a few milder months and I'm scared to introduce change.

 

I appreciate any advice.

 

Thanks,

Lindsay

[ChessieCat]

sam-e-s-adenosyl-l-methionine

 

Only make one change at a time, so you wouldn't reduce Sam-e and start omega 3 at the same time.

 

Also when you are not sure if you are ready to taper, but think you might be, try a very small reduction first.  Same with starting anything new, only take a small dose.

[TinyDancer]

Hi @ChessieCat,

 

Thank you for your advice. Do you think I should try 200mg (I'm currently at 400mg)? Or do you think I need to try around 300mg first? It's more effort to figure out 300mg because I need to buy liquid form and maybe mix it with 200mg pills. You can only buy the pills in 200mg and 400mg.

 

Or, was wondering what you think about trying a small amount of fish oil while staying on 400mg SAM-e, and see if I tolerate it. If it works fine maybe I find the right level of fish oil and when that feels stable then I taper off SAM-e?

 

Thanks,

Lindsay

[ChessieCat]

4 hours ago, TinyDancer said:

Do you think I should try 200mg (I'm currently at 400mg)? Or do you think I need to try around 300mg first? It's more effort to figure out 300mg because I need to buy liquid form and maybe mix it with 200mg pills. You can only buy the pills in 200mg and 400mg.

 

If you want to get of the Sam-e and keep withdrawal symptoms to a minimum you are going to have to find a way to make small reductions.

 

You can probably cut the tablets and/or you might need to weigh pieces of them, or possibly crush and weigh.

 

It's up to you whether you start fish oil or start to taper, but as I said only one change at a time and try a small amount of fish oil to begin with.

[TinyDancer]

I think I jinxed myself. I said earlier that my depression was manageable and my waves were shorter. It's really not true though. The last two weeks have been really hard. I'm crying almost daily, and it is triggered directly by stress. I'm having more vivid suicidal thoughts. This year I thought it was getting better. I would have one really bad day each month, somewhere around my period. But July has been really bad and this week isn't near my period.

 

I read that SAM-e can wear off after a year. I doubt that is what is happening, but maybe? It's why I planned to taper off within the year but now I don't want to reduce any help I may be getting from it.

 

Maybe I will try adding Selenium. It should only take a couple weeks to test it and get used to it. If it takes well then I could try fish oil again, which I know could take longer to find the right dose. Then maybe I could plan a taper off SAM-e.

 

I'm so upset that I am back tracking. I thought I may have a shorter journey through this. I'm glad the anxiety has waned because I have never had it before discontinuing Lexapro. The depression kind of feels like what I remember, but way more severe. I don't know when you make the call that you actually need to be medicated vs. wait to see if what the real you is. I still don't think this is the real me yet, because it is so directly triggered by stress. One moment of getting overwhelmed or a stressful work discussion triggers crying. It seems like my system is still over sensitized.

 

I realize this forum is not for receiving medical advice. I am just venting. But if you have a suggestion on the dosage range for Selenium it would be helpful.

[Ariel]

Hi there @TinyDancer

Just want to say hello and extend my compassion.

 

It sounds like you're in a rough wave at the moment. 

I'm sorry things are so hard right now, these waves can really throw us for a loop. 

It can be very difficult when we are noticing steady improvements and then suddenly are hit by a wave. 

It can feel disheartening, discouraging, disorienting -- all the dis-es!

The non-linear trajectory of healing, its unpredictability and uncertainty, pose a unique psychological challenge.

It's one of the trickiest aspects of this chronic debilitating iatrogenic illness we call protracted withdrawal syndrome. 

I sure can relate!

The good news is:

This is temporary. It will pass. It gets better. 

Healing is happening all the time, also when we're in a wave, also when we don't consciously feel well. 

 

When I'm in a wave it helps me to read this essay, What is happening in your brain?

It discusses some of what may be happening in our brains during recovery. 

I find it reassuring and inspiring to be reminded of all the incredible work my body is doing 24/7 to heal. 

On a conscious level I am clueless as to the heavy lifting and elaborate efforts going on behind the scenes.

My body, brain, nervous system, indeed my whole organism is working very hard to heal and is doing a phenomenal job. 

Sometimes I experience its labor as unpleasant symptoms, which places demands on my mind and higher awareness.

Even when I'm feeling extreme discomfort, my body is still healing. Isn't that amazing?

Healing is happening all the time, whether or not we consciously feel it.

 

I also appreciate this topic, Acceptance and Hope

Practicing acceptance and patience on this long, arduous healing journey isn't always easy, but and it does make a big difference. 

 

Hang in there, TinyDancer. 

This is temporary. It will pass. It gets better. 

You have been working hard and you have come far. 

I trust your investments of time and energy are worthwhile.

I trust you are already reaping the healing rewards, even when it might not consciously feel like it. 

You are well on your way. All you have to do is keep going, keep walking, one foot in front of the other, one step at a time. 

Moment by moment, hour by hour, day by day. 

You will get through this. You are getting through it. 

You got this. 

 

In solidarity and support, 

A. 

 

[TinyDancer]

Hi @Ariel,

 

Thank you for your kinds word and support. I read the posts and both were comforting. Accepting that these waves are my brain healing itself is something I need to work on.

 

Thanks,

Lindsay

[KenA]

@TinyDancer Keep hanging in there. Everything you are going through is temporary. Just keep reminding yourself that no matter what you are experiencing, it's only temporary and will pass at some point. Till it does just distract yourself as best as you can and keep pushing through! You've got this!