Symptoms: Akathisia, brain zaps, emotional blunting, sexual dysfunction, cognitive impairment, insomnia, depersonalization/derealization, suicidal ideation, neuropathy, severe anxiety/panic, muscle/joint pain, GI disturbances, severe muscle spasms down spine, severe back pain
I decided to go off of 30 years on venlafaxine when I learned that the “low serotonin myth” had been debunked. In all of that time, not one doctor asked me if I wanted to continue the medication, or if it was working or causing any bad side effects. I had been doing Spravato treatments for some time and had zero depression at the time. I was feeling great, except for ongoing drenching sweats in the early morning hours and vision problems, both of which resolved going off venlafaxine. I’d also had a negative brain MRI.
I had been on venlafaxine 150mg for decades. So my med provider told me to take 75mg for a month. Everything was going well, so he had me lower the dose to 37.5mg. I was still having no negative symptoms, so he told me it would be OK to stop after 2 weeks. That’s a 6 week taper after 30 years!!!
Well, I had no idea what was happening when the brain zaps started less than 24 hours later. Brain zaps felt like my brain was sloshing back and forth every time I moved. The symptoms progressed, and day three is when I went to the Emergency Room in horrific head, neck, back and leg pain, and I was unable to stand up for more than 15 minutes at a time. Crying and trying to keep myself from screaming, I told them I thought it was related to stopping the venlafaxine because I had heard of brain zaps. They ignored me, multiple times. But I had no idea how bad it would get.
I live alone and didn’t know anyone where I live at the time. I was in agony physically, mentally and emotionally. I had extreme anxiety and felt like I would crawl out of my skin. I was given meds for pain, Ativan and Toradol, and a script for hydrocodone in the hospital. This was a Saturday. On Monday I saw a neurosurgeon who said it wasn’t my back. So I made an appointment to see a pain specialist who did two epidural steroid injections, which over time helped the back pain. During this time I saw my psych med manager and therapist two times each and told them what was happening. Neither said a word about withdrawal!
I felt like I was going to climb the walls. I was angry at everyone. At times I would scream into a pillow so as to not disturb the neighbors. I would drive to the grocery store screaming at the top of my lungs! I felt I would explode. I could barely get through the store, and for 6 weeks couldn’t stand for more than 15 minutes to prepare meals, shop, dress, do laundry or shower. I felt so horrible I thought about suicide every day! I didn’t know it was humanly possible to feel that horrible.
The therapist asked me if I was suicidal or homicidal, and I said, “Both!”—and he asked why I hadn’t done it. I said I was afraid of botching it. His response was, “Well, that does happen,” as he ushered me out the door. Period. No one did anything to help me except for the injections. I thought I would die for three months. I think having the pain medications was the only reason I didn’t kill myself. It was so horrific I don’t even have words for this nightmare!!! I never should have been taken off venlafaxine in 6 weeks! More like years.
I then learned about akathisia, which can happen going on psych drugs and coming off too quickly. Akathisia is a hell I wouldn’t wish on anyone, and later I was told it causes brain damage. Six months later, on no psych meds, I was convinced to do TMS. They said it was a safe drug-free alternative for depression. I wasn’t even depressed. I was grieving an estrangement situation and hadn’t been allowed to see my baby grandson in almost a year. TMS never should have been done on a damaged brain. But no one told me any of this.
Starting day one, I was having insomnia, and a few days later, nerve pain in my lower legs. I was pushed through all 36 treatments while I developed intense fear and anxiety I’ve never experienced before. My first panic attack was two days before finishing the course. Symptoms worsened for the following month until I went into complete nervous system collapse, requiring 3 meds to keep me out of the hospital. I couldn’t eat or sleep, had nighttime panic attacks hourly, and lost 22 lbs in 3 weeks. I felt like I would die for over 5 months!
Now, I’m 11 months out and still struggling and barely functioning, and trying to get off these awful drugs. This is a nightmare that won’t end. It’s all ruined my life. I have no life. I’m surviving day by day.
These drugs are doled out like candy in most doctors’ offices, and they aren’t taught how to get you off of them, so they don’t ask. And Transcranial Magnetic Stimulation is no different. Many people, like myself, have sustained brain injuries similar to a severe concussion or a TBI cascade. And yet the trials kept adverse events out of the literature, and those of us harmed are told “it can’t be the TMS.” Just like how they say drug withdrawal isn’t a problem when people are losing their lives!