I’m a 57-year-old native of Kansas City, Missouri. A lifelong accountant, I used to work for the City of Kansas City. I also used to be very active: volunteering, taking care of my mother, socializing with friends, and enjoying yearly vacations to the Caribbean. From the time I was 27 until I was 49, I took 20 mg of fluoxetine (Prozac) with very few side effects. But everything changed after my psychiatrist tried me on a different antidepressant that was then new on the market.
Highjacked by a Drug
In 1988, doctors had put me on alprazolam (Xanax) after I had a severe panic attack. They told me I was “stressed out” but never explained what panic attacks were. Alprazolam made me very sleepy, so I only took a couple and then stopped. Not long after that, I started having non-stop headaches and achy muscles. After blood tests came back normal, my doctor prescribed me fluoxetine and I started feeling better. My doctor told me I need to take them every day for life, just like a diabetic or someone with high blood pressure. We didn’t have the Internet back then and I was raised to trust my doctor, so I continued to take them.
When I reached my late forties in 2012, I was under a lot of stress, what with a new position and my mother’s health failing. My doctor told me it was time to divorce fluoxetine, that it wasn’t working anymore. She took me off Prozac and instead prescribed me 37.5 mg of venlafaxine (Effexor), increasing the dose to 150 mg over a few weeks.
I gradually started noticing changes in how I felt. I told my doctor about them, but she denied that they had anything to do with the pills I was taking. Then I started getting severe migraines, rendering me bedridden. Since my doctor had told me my symptoms were unrelated to venlafaxine, I started seeing specialists, including an allergist and a neurologist, to no avail. I was also having severe digestion and bowel problems: I couldn’t eat much without feeling extremely full and was so bloated I looked seven or eight months pregnant. For over a year, I didn’t have a normal bowel movement. My insides felt inflamed; I could feel food moving through my intestines and had extreme pain in my upper left side. I had a colonoscopy done and it came back normal, so I thought maybe I was gluten intolerant and changed my diet. I started walking 30 to 40 minutes, but nothing was helping. I found out years later that I had all the symptoms of gastroparesis.
At this point, my memory started deteriorating. I couldn’t think clearly or remember things and sometimes my mind would go completely blank. This was affecting my accounting job working with balance sheets and doing payroll. I started making a lot of errors. My vision also changed drastically, so I had to get glasses. New symptoms kept cropping up:
- sweating a lot with little or no exercise
- getting lightheaded upon standing
- losing 50% of my head hair and all the hair on my arms
- tremors, tingling, and numbness in my hands
- chest pains
- constant itching
- joint pain
- a copper taste in my mouth
- bruising easily
- dental problems
- twitching of my eyes and body, including jerking up at night or when lying down
- dry hair and skin
My brain felt like a shriveled-up raisin and the bones in my feet felt like they were fractured. But I just assumed this was what it’s like to get older in combination with the stress in my life.
A year later, on a Sunday in March 2013, I forgot to take my 150 mg of venlafaxine. When I woke up on Monday morning, I was so dizzy and nauseated I couldn’t walk to the shower without holding onto the walls and furniture. That’s when it dawned on me: This feels drug-related somehow. I decided to look up the side effects of venlafaxine on WebMD. I was shocked at what I discovered. I had a lot of the listed side effects as well as others not listed. I printed out the list, highlighting all the ones I was experiencing in yellow and the side effects my psychiatrist already knew about in orange. I called her office and said I needed to get in as soon as possible.
During my appointment, I told her I was very disappointed in the way she had managed me on this medication. I handed her the highlighted printout with my side effects. She told me, “They have nothing to do with venlafaxine…Where did you get this? The Internet? You can’t believe everything you read on the Internet!”
I replied, “All my previous doctors have told me to get medical information from WebMD.com and this is where I found that list.”
She became very condescending and told me to feel free to get a second opinion. I told her to take me off this crap and put me back on Prozac! So she wrote me a script for both drugs, weaning me off venlafaxine and onto Prozac over a two-week period. The first day she had me drop from 150 mg to 75 mg of Effexor and also take 20 mg of Prozac as a “bridge.”
By that afternoon, I thought I was losing my mind. I was so dizzy, nauseated, and disoriented and couldn’t think straight. So I called my psychiatrist, who told me I needed to go to the ER and check in for outpatient treatment to “manage you on your medication.” I didn’t feel able to drive there, but she told me that if I didn’t, my doctor would not write me the note I needed to use the Family and Medical Leave Act to take time off from my job. So I drove to the ER and almost hit another car on the way.
The ER doctor did a physical evaluation and then proceeded to tell me what I was experiencing was venlafaxine withdrawal. My jaw nearly hit the floor! (I associated “withdrawal” with street drugs, not antidepressants.) He then told me to go home, crawl into bed, stay hydrated, and take care of myself. I could not believe what I was hearing. I hadn’t felt this violently ill in my entire life! As I drove home, I caught myself driving on the wrong side of the road.
Descent into Hell
Unbeknownst to me, I was about to enter pure hell. I was bedridden for three weeks with severe sweats, shivers, dizziness, hallucinations, and freezing hands and feet. If I closed my eyes, I would see white dots coming at me and I couldn’t watch TV because it made me nauseated. It felt like I didn’t have any control over my brain or body anymore. I lay in bed staring at a wall trying to stay as still as possible, thinking to myself, I’m under doctor’s care…she can’t be killing me? I reached out to friends and family for support, but none of them understood and pushed me away.
So for three weeks, I lived mainly on toast, soup, and cereal, only getting out of bed to eat or use the bathroom because I could barely walk without having to hang on to something. It was the worst mental and physical torture anyone could imagine. I literally thought I was going to die alone in my bed. If my brain had been working properly, I would have ended my life with no second thoughts.
On April 11, 2013, desperate for answers, the only thing I could think to do to help myself was to start a closed Facebook group to see if anyone else was going through the same hell I was. Deep down I felt like I was wasting energy I didn’t even have. I didn’t think anyone would join.
To my surprise, people gradually started to join my Facebook group and began posting their stories. They shared about the disabling side effects their doctor never warned them about or had ignored or dismissed. Those wanting off venlafaxine weren’t able to due to severe withdrawals, and expressed how some of their doctors had told them they could stop cold turkey, taper off by cutting their dose in half each week and then stop, skip or alternate days, or bridge to another drug. Each of these methods caused some of the group members severe if not disabling withdrawals, and some of those bridging found themselves having worse symptoms, and/or ended up stuck on venlafaxine and the new drug, unable to taper from either.
It was obvious after reading several members’ posts and comments that doctors have no idea how to taper people off venlafaxine safely, nor are they aware of the side effects or withdrawal symptoms venlafaxine causes. This drug has one of the shortest half-lives of all antidepressants, causing dependence and difficulties getting off due to severe or disabling withdrawals—some of which last months and even years.
Hitting Rock Bottom
I returned to work around week four of my withdrawal from venlafaxine (after suffering a kidney infection from lack of fluids while I stayed in bed, barely eating or drinking) only because I was in fear of losing my job. I started out working half-days for a few weeks, still very ill, weak, and disconnected. I was able to work about six to eight weeks before being slammed again with disabling withdrawal symptoms. I called my psychiatrist, but she never called me back. Instead, I received a letter in the mail from her office saying I was no longer her patient.
So, I found a different psychiatrist who didn’t believe me when I told him I was having withdrawals from venlafaxine. He told me the drug had to be out of my system by then and that it was not possible. I later learned this was false: Tapering too fast can compromise the nervous system, causing withdrawal symptoms that can last an indefinite amount of time. My doctor then tried me on Paxil (paroxetine) and out of nowhere, after not being able to work for several weeks, I felt better than I ever had in my life. I had so much energy and didn’t even need to sleep. I had been up for two days straight and felt awesome! I called my doctor and told him I was better and to write me a note so I could return to work and get my life back to how I knew it before.
During my workday, I hit bottom again—and even harder this time. The withdrawal symptoms were back with a vengeance and this time stripped me of all desires, goals, and purpose. I asked myself, Why am I here? No one cares about me and I’m living in PURE HELL. I can’t even take care of myself. So, I decided to end it all. I searched and searched the Internet for ways to end my life, only to find suicide hotline phone numbers on every website. I was so angry and frustrated, I just wanted to end this torture. I ended up curled up in my shower, crying and begging God to help me.
Somehow, I made it to the next day. I called my psychiatrist and told him what happened, and he almost had me committed for treatment until I insincerely promised him I would not harm myself. He then proceeded to try me on all kinds of drugs again: Seroquel, Latuda, Abilify, Celexa, Lamictal, Hydroxyzine, Lexapro, Zoloft, Adderall, etc. The only ones I didn’t get prescribed were Cymbalta and lithium.
All these drugs were making me worse (Adderall made me so aggressive I nearly killed a family member and attacked complete strangers). So, I made yet another appointment with my psychiatrist. During this appointment, he told me I was only taking Xanax! I had to correct him and tell him all the medications he had me on and at which dose. While I was telling him this, he was frantically writing it down in my chart. He didn’t even remember what he had prescribed me! At the end of my appointment, he told me I was “non-compliant” and wanted to refer me to a different psychiatrist.
So I called my general practitioner, begging him for a referral to a psychiatrist that actually knew what he was doing. He gave me two referrals, but I soon found out it would take almost two months to see one of them. At this point, I hadn’t been able to work full time in four months and had used up all my federally guaranteed medical time off.
I couldn’t handle it anymore! But this time, I had figured out how I was going to take my life. Feeling completely numb inside and out, I climbed out of bed and was gathering razor blades when the phone rang. I saw it was an old girlfriend from junior high school with whom I had reconnected several months back. When she greeted me, “Hey, what are you up to?” I broke down crying, sobbing nonstop and unable to catch my breath for some time. Then I blurted out what I was in the process of doing. She stayed very calm and talked to me until her husband got home, and then they rushed over to my house and stayed with me until I almost fell asleep on my kitchen table. Before they left, they made me promise God and both of them that I would never take my life. So, I did.
I didn’t say anything about the incident to anyone in my Effexor support group, though. I didn’t want to scare them. I was trying to be their rock and find out how to fix us all.
As I waited for my appointment, I continued to endure dozens of different withdrawal symptoms (which persisted for more than three years). I struggled mentally. Common things that had come naturally didn’t anymore, and my short-term memory was very poor. It felt like someone had clipped circuits in my brain, causing me to do strange things like taking a frozen dinner to the bathroom to microwave it, or not being able to figure out why my car wouldn’t start when I didn’t even have my key fob. I had to double-check everything I did.
I also couldn’t concentrate properly, sometimes feeling completely blank, and found it difficult to figure out how to pay my bills online when I’d done it the same way for years. I became afraid to drive or take the trash out, and my anxiety levels were off the charts. I also had bizarre psychological sensations and thoughts, including paranoia and surreal feelings—as if someone had entered or that I was leaving my body, or that someone had slipped me a bad street drug.
Every day brought different physical symptoms, including:
- lack of energy/fatigue
- digestion problems
- scabs on my head and body
- sensitivity to foods, chemicals, noise, and/or light
- feeling bruised to the touch
- feeling of a vice grip squeezing my head
- brain zaps (electric shock feelings),
- hand tremors
- numbness and tingling in my fingers
- cold hands and feet
- poor vision
- back, shoulder, and/or foot pain
The whole time, I’d been talking to other members in my Effexor Facebook group. It was a huge relief to know I wasn’t alone. Many were going through the same thing and not getting any help or support from their doctors. I couldn’t believe what doctors were doing to these people, and to me. So I kept searching high and low for ways to fix us all.
I found information on high-quality supplements, how to taper safely, and how to reinstate drugs and then taper off slowly from multiple websites, including the Surviving Antidepressants forum, to help us with discontinuation syndrome and protracted withdrawals. Unfortunately for me, it was too late to reinstate: My brain and body were too sensitized at that point, so I couldn’t tolerate any supplements or remedies. And I also discovered that what helped one person might make another person worse. I couldn’t find a remedy or test that would work and help everyone as a whole because antidepressants alter each person’s brain and body differently.
Finding My Purpose
My appointment with a new psychiatrist finally arrived. During intake, he asked me what medications I had been on. When I began listing and said venlafaxine, he stopped me in mid-sentence. “Effexor is the last medication I would put any patient on,” he told me. I knew right then I had a good doctor. Instead, he put me back on Paxil, and I started doing better, so I requested to try and go back to my job— after a five-month absence— starting out with half-days and building up to eight-hour days over two weeks.
Then, on the week I was to start back full-time, my boss put unrealistic demands on me without any training, denying me breaks and lunch for nine hours. Of course I couldn’t think straight, and he wouldn’t help me. His patience had run out.
I was barely functional when I left work that day. Sitting at the entrance of the parking garage, I would look both ways for traffic and pedestrians, but my brain wasn’t keeping up with what I was seeing. I finally just pulled out, praying I didn’t hit anyone. No words can explain the mental torture I was enduring, and I hit rock bottom for a third time. I prayed to God, “You saved me from taking my life. But I feel like I have no purpose here…please let me know what my purpose is?”
Then, on one of many nights I couldn’t sleep, I got up and turned on my laptop. Not long after, I noticed someone wanting to join my Effexor Facebook group. I accepted her and the next thing I noticed was a desperate, suicidal post she’d made. I immediately friended her and started private messaging her for over an hour, just chatting back and forth. Then she asked me if she could call me; she wanted to put a voice to my name. We then spoke for over an hour, and before we said our goodbyes, she told me, “You just saved my life.” She had been planning to end it that night. After we hung up, I cried and looked up to God and said, “Thank you for showing me that even at my lowest point, I do still have a purpose.”
I also tried a new tactic, calling my county mental health department twice and begging them for an in-home counselor. The county got me set up with a counselor who came over for 1½ hours once a week, and that arrangement continued for approximately two years. My counselor, Kathryn, was a lifesaver. She saw firsthand what I was enduring, and I educated her on what protracted withdrawals looked like. She was very compassionate and willing to learn, supporting me by helping me to get groceries, picking up my mail, and taking out my trash. She also helped me with filing for disability, drove me to disability hearings, and even testified on my behalf.
My recovery has been so gradual that I can’t pinpoint when most of my symptoms eased. I do remember that in August 2016, I saw the first sign of healing. Though I was still stuck on Paxil, my non-stop nausea stopped and only comes in waves now. Around January 2017, my vivid and gruesome nightmares were easing up and eventually stopped. To this day, I still find it difficult to focus enough to read, my short-term memory is poor, and I struggle with fatigue, energy, balance, and motivation. I sometimes have waves of severe body pain and what feels like a floating brain, when I am foggy-headed, off-balance, weak, and very anxious.
After 7½ years (3+ of them bedridden), I’ve made it past the worst and am still healing. I’m not even sure how I did it. I just kept asking myself, “What if I heal some and get relief tomorrow?” It was that “what if” that pushed me to continue. That, plus my promise to God and my Effexor Facebook group, because I know we will always be there for each other.
Some people don’t make it through the years of protracted withdrawals, though. We have a memorial page in the group (which now has more than 6,000 members) to honor our fallen warriors, including five individuals who have died in the last two years alone.
I would like to end my story with a question: When will pharmaceutical companies and medical schools start educating our medical community about the warnings on and side effects of these drugs, the likelihood of withdrawal, and how to taper people safely off them? That day is long overdue.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.