The following is a letter written by a man recovering from Zoloft and Lexapro withdrawal and protracted withdrawal to his friends. The author chooses to remain anonymous.
You’re getting this message because I very much value you as a person in my life.
I’m writing this email to you (and a handful of others who I consider very close friends) because I need to be transparent with you about a very severe iatrogenic health issue I’m going through and which I will likely be dealing with in one way or another for a very long time. An iatrogenic health issue is a health issue that was caused by medical error or in the course of receiving medical treatment.
I’m currently staying with my parents while I do my best to recover. Some of you may know that I had originally planned to spend the last couple of months traveling in some pretty exotic locations. Unfortunately, due to how I feel, I was forced to cancel most of my travel plans.
You may be someone who knows a lot or a little bit about what I’m going through because I’ve shared it with you, or you may be someone who has no idea.
Please note that if you are a person that does not know about my situation, I did not share it with you only because it didn’t come up, I honestly didn’t know what to say, or it was just really difficult to speak about.
The truth is that what I’m going through is something that is difficult for me to talk about and share. It has caused me to isolate myself and to feel isolated greatly. It’s important that you know, as a very dear friend of mine, that if I am at times unresponsive to your messages or calls, don’t initiate contact with you, or don’t really feel like hanging out, it really has nothing to do with you and everything to do with my health.
It’s important for me to say that because it’s never healthy when friendships get to be too one sided or one person finds himself/herself doing most of the initiating. So rather than you potentially think that we’re just losing touch, that I’m uninterested in our friendship, or anything like that, it’s important for me that you know about what’s going on in my life.
Another reason I’m writing this email is because it can be very difficult to get accurate and realistic information about my condition. I ended up in the situation I’m in because of a severe lack of knowledge and negligence. If more people going through what I’m going through were open about what’s happened to them, it could do a lot of good and save people from tremendous amounts of suffering, as well as their lives.
Before I dive into what actually happened and what’s going on, I want to preface with the following:
- I am not looking for advice. If you wish to learn more about what specifically happened to me and the steps I am taking to treat myself, I have shared it below. However, I respectfully ask that you refrain from making suggestions unless you are someone who has experienced this firsthand. Trust me, people who experience illness and injury research their conditions obsessively. There is a lot of confusion and misinformation about what I’m going through and I ask that you please not offer me any advice unless you have firsthand experience dealing with the issues I describe below.
- I have been caused a lot of pain, suffering, and damage as a result of the mainstream medical establishment and by pharmaceuticals. In a lot of ways, what I will write here may come off like an indictment of modern medicine. If you fervently disagree with my take on my condition or are someone who benefits tremendously from taking medications as prescribed by your doctor, that’s fine. I am not looking for an argument or debate whatsoever. I am genuinely happy for your good health!
- I’ve collected a lot of knowledge about what I and many other people like me are going through. If you or someone you know is going through something similar, I’ll be happy to refer to resources and individuals who have and continue to help me tremendously on this journey.
I am experiencing severe protracted withdrawal from taking anti-depressants I was prescribed after having negative reactions to treatment I received for my hearing loss in 2016.
As you know, in September 2016 (2.5 years ago) I experienced sudden hearing loss in my left ear. Why I experienced this hearing loss is anyone’s guess. I was treated for my hearing loss successfully using extremely high doses of a very powerful cortisteroid called prednisone. I was treated that September orally (taking pills of prednisone) and in November 2016 by having it injected directly into my ear drum.
I suffered from an extraordinary array of horrific physiological and psychological side effects that I was not warned about whatsoever by medical professionals. In fact, I asked if there were any side effects to watch out for and I was told that there weren’t. I tapered off prednisone very, very quickly and suffered tremendously.
I experienced severe agitation, physical stress, insomnia, headaches, fatigue, and hyperarousal (no not the sexual kind haha). Not only was I not warned by medical professionals about the side effects, but I was also not encouraged to replenish my body with vital nutrients, whose absence were partly causing these side effects.
I experienced these side effects for a few weeks after my last time in the hospital. Due to how horrific the side effects were, I randomly Googled ways to make me feel better, bought a bunch of herbs, minerals, and vitamins from a pharmacy that I read about online, and used them. It actually made me feel a lot better!
I went to my primary care physician to talk about my reaction to the prednisone in November 2016 even though I was starting to feel somewhat better with the supplements.
She recommended I take a low dose of an anti-depressant for a few months to help me get evened out. When I told her I wasn’t depressed and had no history of depression or anxiety before, she told me that anti-depressants are used to treat a variety of conditions like chronic fatigue, anxiety, sleep disorders, and fibromyalgia. She did not make any recommendations about my diet, about taking off time from work, about visiting my family, etc. She recommended I take a drug.
She referred me to a psychiatrist and I went to the appointment because I was someone who listened to his doctor. I told the psychiatrist what happened to me and that I was feeling better with the supplements. She was adamant that the supplements were doing nothing for me except creating a placebo effect. She stated that I needed to take medication to get better (after having pharmacological reactions to a very severe steroid injection a few weeks earlier) and that there were no risks or side effects to taking the medication.
Believing her (because she’s a doctor), I was prescribed a starting dose of Zoloft 50mg, an SSRI, a common form of anti-depressant. Within days, I started to feel enormously depressed, agitated, sick with flu-like symptoms, and barely functional. When I wrote to the psychiatrist about what I was experiencing, she said that it was normal for medication to make you feel worse before it makes you feel better. I told her I read online about a lot of people having a lot of trouble taking anti-depressants. She told me not to believe what I read on the Internet.
Unfortunately, I listened. My first month taking the drug, I felt really off. Down, anxious, panicky, agitated, sick, but I stayed on it with the hope that it would do me good in the long run. And after about a month on it, I did start to even out and feel a bit more like myself.
When I first started having issues getting used to the medication, I asked about a follow up to discuss what was going on. My doctor told me she wanted to see me only once every 3 months. I switched psychiatrists as I learned that is very bad practice to place someone on a drug where you don’t know how it will affect them.
It took about 3 months for me to feel pretty much back to normal, but when I did feel back to normal I was, of course, very pleased.
6 months after getting on the SSRI, the psychiatrist I switched to said I was ready to get off. To get off, I was encouraged to take a half a dose of the drug for a week and then to stop completely. This was June 2016.
Only in retrospect do I now know how awful of a recommendation that was.
A few weeks after getting off the drug, I started getting very moody, emotional, and strangely depressed. My psychiatrist suggested that perhaps my “symptoms” were coming back. What symptoms? I asked. I didn’t have any history of depression. I took the drug because of the steroids.
I found reports online that I was suffering from withdrawal from the drug. When I brought this to my psychiatrist he denied any possibility that psychiatric medication can cause withdrawal or is complicated to withdraw from.
In September 2017, I was getting ready for a course of business trips and a speaking tour to promote my book. I didn’t feel well and I felt like I was getting worse and worse. Not knowing where to go or who to turn to, I went back to my psychiatrist to discuss options. I went back to him because I just didn’t know what else to do or who to approach.
He recommended I go on a different SSRI on a low dose. Within one day on the new drug, Lexapro 5mg, any depressive symptoms were gone and I realized I was in withdrawal. I stayed on that drug for just 2.5 months. Unlike the previous drug, this one, though on a low dose, felt very strong. It made me very agitated, shaky, and pepped up with energy…not something a person like me needs. I felt very unable to relax and focus. I knew that it wasn’t supposed to be this way.
After just 2 months on that drug, the doctor said I should get off of it and see how I do. I’d done researching up to that point about tapering and had heard about micro-dosing the drug to remove the potential for withdrawal effects. He told me that was nonsense and that there were no pharmacies in Tel Aviv that would make microdoses of medication. If you click the link, you’ll find one that does specifically for this purpose.
To be on the safe side, I went to a different psychiatrist I was referred to through a friend, who basically told me the same thing as the first psychiatrist. So after doing a longer taper this time, I came off the second drug in November 2017.
Within 2 weeks I was in full-brown drug withdrawal hell, much much worse than after getting off the Zoloft. I experienced severe headaches, intense depression and severe anxiety, things I’d never had before in my life. The worst symptom I developed after getting off of Lexapro was akathisia, a full blown internal restlessness that can only be described as true hell.
By this point, I connected with groups on the Internet of other people going through drug withdrawal such as SurvivingAntiDepressants.org and the Withdrawal Project. People on the forum said I needed to go back on a much lower dose of the drug and wean off very, very slowly each month. I went back to both the psychiatrists I was just in touch with and begged them to give me a prescription for tiny doses of the drug, but they told me it was impossible.
The pharmaceutical companies that create these drugs state that withdrawal symptoms from their medications should last 3-6 weeks. Believing what I read online out of sheer desperation, I told myself to just be strong and fake it till you make it. I just needed to wait 6 weeks and I’d start to feel fine.
Ha! 6 weeks came and went and I was getting sicker and sicker. I felt like my entire body was buzzing like a refrigerator with the most horrific stress headache I could ever imagine. Finally by the end of January 2018, I collapsed and gave in. I had a complete crash because I could not take the physiological and mental strain. I said fine, give me a drug. Just make me better. Please, just make me better!
I found a new psychiatrist, who proceeded to prescribe a tricyclic antidepressant called Amitriptyline, which gave me the most excruciating pain in my testicles you can possibly imagine and sent me to the hospital. That doctor randomly suggested I go back on the first drug I was originally on, Zoloft, because I had done “well” with it before.
Desperate, I started taking the Zoloft again, but felt very little relief. I felt very dysphoric and the akathisia (the chronic restlessness) was very bad. I found yet another psychiatrist, an American woman who was actually very sweet, who had no answers for me.
In order to relieve my akathisia, she encouraged me to take a drug called Ativan, a very addictive benzodiazepine. I took it for 3 days, had horrific nightmares, and stopped thank god.
From February-April 2018, this new doctor kept me on the low dose of Zoloft I was on and could only offer additional drugs. She sent me to a psychopharmocologist she really respected. Let’s just say meeting him was the biggest waste of 1200 ILS one could possibly imagine and isn’t even worth mentioning here besides to say that.
Throughout this ordeal it became very apparent that literally no mainstream doctor I went to had any idea what they were doing or how to help me and get me out of this sheer state of oblivion.
Finally, the American psychiatrist admitted as much. In April 2018, she fired me as a patient, telling me she believes that drugs were the result of all these issues I was having, she didn’t recommend I go to any more psychiatrists, and that she really didn’t know how to help me at all.
Thankfully, the one thing she did do was refer me to a Canadian doctor who practices orthomolecular medicine, an obscure practice of medicine that focuses on using megavitamin therapy to treat illness.
I went to see that doctor, Dr. Litman, in Tel Aviv at the end of April 2018. Dr. Litman was the very first doctor to actually have an idea of what was wrong with me. He told me that the prednisone and psychiatric drugs I was given are some of the most dangerous and powerful substances on Earth and can be more difficult to withdraw from than heroin. He told me that they deplete the brain and body of massive amounts of nutrients.
He said he would help me get off the Zoloft safely and the only way to heal and reclaim my life was to start to feed my body the right amounts of vitamins and minerals. He said the recovery process could be 2-3 years and that each person is different. He also warned me that the most severe withdrawal symptoms can arrive months after getting off the medication. He didn’t know how severe my personal withdrawal would be, but he said it would be way worse without taking anything.
Over the course of 2.5 months, Dr. Litman weaned me off of Zoloft. Even that, in retrospect, was very, very fast, but it was complicated because I was not well on the medication. It was hard to know what was helping versus what was hurting.
He advised me to start taking specific supplements, such as Daily Essential Nutrients by Hardy Nutritionals, which I truly can’t recommend enough.
Within a week of starting to take these vitamins, I felt substantially better. The first thing the vitamins really helped with was the akathisia, chronic stress, and agitation.
The first 4 months of taking those supplements as well as additional Vitamin C, I felt like I was really getting back to my old self. You might know that I traveled to the UK and Brazil during that time and went to a lot of parties with friends.
Unfortunately, in October 2018, about 5.5 months after starting to take the supplements and 3 months after stopping medication, I started to experience what’s called delayed protracted withdrawal.
It happened gradually. Some of the initial things I experienced were severe headaches again, brain fog, and feeling really physically stressed out and agitated.
By November, the akathisia I had really thought I’d totally kicked came back into full effect. Once again, I felt like a buzzing refrigerator. Although a setback, I was confident I would get better soon. December and January were much harder. The akathisia and physiological stress were a lot for me.
Dr. Litman made recommendations for additional supplements, some of which actually really help. Some of those supplements include:
– Niacin – something I’ve started taking only inn the past couple of days recently, is a very helpful stress reliever.
– Additional magnesium
– Additional Vitamin B6
Still, the chronic stress, agitation, and akathisia triggered symptoms of fatigue. Honestly, this was all too much to bear for me. I was really looking forward to my trip to the East, but I had to be honest with myself.
I needed to go home and make my recovery my full priority for awhile.
Since coming home at the end of January, I’ve focused on working on my new business and rest.
I’ve had time and the focus to connect with others who’ve undergone significant withdrawal difficulties.
For a while, due to how well I was feeling for months last year, I thought I was really going to be one of the lucky ones and avoid the withdrawal. I thought “Heck I feel great! I’m gonna get out of this!” Unfortunately, as I discovered through my research and connecting with other people dealing with these types of issues, experiencing the “worst phase” of withdrawal at around 3-6 months off the drugs is unfortunately very common.
Some books I’ve read about other people’s experiences and research are:
Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America
I’ve thankfully connected with a number of people who were in similar situations as me and were able to recover. However, many of them state that the very worst parts of this torturous withdrawal process was between 6 and 18 months off medication.
Essentially, 10 years from now I might be doing great! But the next year or two may be very, very difficult.
I’m currently 8.5 months removed from any type of drug, so go me! Unfortunately, these past few months, I’ve had to come to terms with the fact that this is going to be a long-term process for me and “faking it till I make it” is not going to cut it. I have seen an enormous amount of ups and downs on this journey, and I am confident I will continue to heal.
Unfortunately, healing is long, slow, and fraught with difficulties.
How I’m Doing Now
Right now, my body is undergoing an enormous amount of stress due to the withdrawal. It’s very, very similar to being a recovering drug addict. I’ve learned very much that the problem with addiction isn’t not taking the substance. The problem with addiction is making your body feel better when you don’t have the substance months and potentially years after use.
I experience stress headaches, severe physical stress, exhaustion, physical anxiety, etc. At home, what I’m really able to do is work on my business (which is going really well!), go to the gym, rest, relax, and work on turning what’s happened to me into something positive.
Some very useful discoveries I’ve found are:
– Large doses of Vitamin B6 have really helped me with the akathisia
– Large doses of Niacin seem to be having an effect on the stress my body experiences and with the depressive symptoms. Niacin is known as an effective treatment for alcoholism and other drug addiction, for those who are wondering.
– Large doses of Vitamin C are also a great stress buster.
I do have minutes, hours, and occasionally days where I feel “normal-ish”, like 85%-90% of my old self. Unfortunately, healing isn’t linear and just because I feel good one day doesn’t mean I’ll feel good the next.
A major thing I’ve learned in terms of dealing with this is that I can’t will my body to heal faster. My body doesn’t care about what I want or what I wish I felt like. It’s going to take the time it needs to take to get well again. And that’s something I have to accept.
A woman I’m in touch with has a now fully recovered daughter who was totally debilitated for about 2.5 years. She advised me that the way I need to get through this is to accept the unacceptable and to give myself time.
Being here, away from most of my friends, is tough. And dealing with this health issue in secret, or rather without sharing it with my circle of friends including people like you, has been the toughest.
This has already been a very lonely experience for a number of reasons. Having health issues is scary. Having health issues further compounded by doctors is scarier. Dealing with life changing drug side effects and pain beyond your wildest expectations really makes you feel like you’re in the 7th circle of hell.
But dealing with it all alone is really the worst. Pretending to the world (except for a few key people) that everything is fine while isolating yourself from very good friends is the worst torture of all. There is a real temptation to withdraw from the world and from people because you simply don’t want the world to know what’s really going on with you. And, in addition, in a lot of ways you don’t know what to say either because you’re not sure yourself what’s really going on.
I realized that part of my healing process, for the sake of my friendship with you, and for the sake of trying to help other people who might be suffering from something similar, it was important for me to share this with you.
If only I’d had the knowledge and resources to understand what I was getting into and dealing with, maybe things would have been different and I could have avoided a lot of unnecessary suffering.
What You Can Do
There are a few things you can do for me to be a good friend.
– Don’t take it personally if you don’t hear from me for awhile. It’s not you! It’s me! No, but really.
– Please reach out and tell me about your life. Even though I’m going through a tough time, I do want to hear about the wonderful things going on in your life and I am very happy for you.
– When I do come back to Israel (which I’m scheduled to do May 1), I will not likely be “all better,” though I hope I am feeling better than I am now. It would be really great to know I can hang out with you and not have to put on a mask or even do something super intense. While you know I love intense stuff and wild social activities, the reality is that for awhile I will need to be a lot more low key than I’m usually able to be. So just having people to talk to, come visit me, and hang out with even when I’m in a lot of pain would be great.
Takeaways I’d like you realize from my story
– It was hard for me to write this letter to you and to be so open about something that has been so insanely difficult and private. You know that I’ve always really prided myself on my strength and perseverance. It’s what’s propelled me to be successful in my career, to see so much of the world, and to endure the ups and downs of friendships with people like you! (That was a joke!). And right now I’m learning about having a different type of strength and perseverance that sometimes feels like I’ve totally lost but other times makes me feel incredibly strong.
– If you or someone you know is suffering from some type of physical ailment or psychiatric issue like depression or anxiety, there are many natural, safe treatments that should be first-line options to help that person recover. Taking medication whose value and efficacy are debatable and whose side effects and addictive properties are still unknown should be a last resort. Drugs are a dangerous. Even if something alternative doesn’t work or takes awhile, there’s also no guarantee a drug will work (at least not without severely disrupting other bodily processes). In my case, as well as for millions and millions of other people around the world, drugs were not just a first-line option, but the only option doctors knew about (yet still didn’t have a clue about).
– Alternative medicine is not all hippy dippy nonsense. If you believe that, then you are a victim of pharmaceutical propaganda. While not all things work for all people and medications do need to be considered for many conditions, allopathic medicine (western medicine) is entirely drug based. Other types of medicines using vitamins, minerals, herbs, etc have a great deal of validation and I credit it for the sole reason I was able to withdraw from drugs and get some relief from my withdrawal symptoms. No I’m not perfect (far, far from it!), but I do credit the supplements I’m taking for making the biggest difference in my life (as well as friendship and family!).
– Doctors don’t know everything, though I do credit one doctor with tremendously helping me. I don’t believe that any of the doctors that hurt me deliberately tried to do so. They were simply operating as they were taught in medical schools (which are heavily influenced by pharmaceutical companies) or what pharma reps tell them. I always believed that if I had a health issue, the first thing I should do is go to my doctor and listen to my doctor. While, like any profession, there are good doctors and bad doctors, you can’t be afraid to fire your doctor and doctor yourself if need be. The fact that virtually none of us have any knowledge on how to do that at the outset is a disgrace to the educational system of our society. Every child should be taught basic preventative medicine. Thankfully, with the Internet this is much easier.
– If you ever get sick and require hospitalization, it is extremely important for you to do everything with an advocate. I went through my ear treatment, recovery, and issues with psychiatric medication virtually alone and without any real understanding of how to navigate the system.
– I don’t blame the Israeli medical system specifically for what happened to me. If anything, none of the doctors ever pressured me to take higher doses of any drug, which is far different from what others I know experience in the United States. My Israeli doctors were, in some ways, far more conservative than doctors in the US might have been. If anything, the real problem is the medical culture in the United States foists drugs upon people at an insane rate (count how many drug ads you see on television) and the rest of the world tends to copy the US medical system.
In conclusion, I want to thank you for being in my life. I apologize if this email and the information in it comes as a shock to you or disturbs you and your view of the medical system in some way. I only wrote it because I value our friendship and it’s important to be honest about what’s happened to me, what I’m going through, and how I’d like to make a contribution going forward. It’s also exhausting repeating my story all the time haha.
As much as I aimed to be more open about what I’ve gone through once it was behind me, since it’s going to continue to be a long recovery process, I realized I can’t just hide out or put on a face forever. And nor should I.
I look forward to being in touch, having you as a resource in my life, and hopefully being able to be a resource for you and others going forward as well.
All the best and much love,