𝗪𝗵𝗮𝘁 𝗜 𝗛𝗮𝘃𝗲 𝗟𝗲𝗮𝗿𝗻𝗲𝗱 𝗮𝘀 𝗮 𝗠𝗼𝗱𝗲𝗿𝗮𝘁𝗼𝗿 𝗳𝗼𝗿 𝗮 𝗙𝗮𝗰𝗲𝗯𝗼𝗼𝗸 𝗠𝗲𝗱𝗶𝗰𝗮𝘁𝗶𝗼𝗻 𝗧𝗮𝗽𝗲𝗿 𝗦𝘂𝗽𝗽𝗼𝗿𝘁 𝗚𝗿𝗼𝘂𝗽 ~
By Laura Vigiano, MS, LCSW
I was a Licensed Clinical Social Worker (LCSW) for 28 years. For the last 18 of those years, I was an LCSW in a psychiatric hospital that had both inpatient and outpatient units. I worked alongside psychiatrists every single day for 18 years. Every single patient was on psychiatric medications, ie. antidepressants, benzodiazepines, and/or antipsychotic meds. I never heard one word about the need to taper off these drugs, or a word about withdrawal symptoms. Side effects were treated not by taking a person off the drug, but by prescribing more medications to treat the side effects.
My education about psychiatric medications really began when I tried to go off the antidepressant Cymbalta. When I first tried to go off Cymbalta I was no longer working. I had developed Chronic Fatigue Syndrome (CFS) and was disabled and no longer could work. I first got sick with CFS while I was still working in the psychiatric hospital. A psychiatrist I worked with said Cymbalta was a good drug for CFS. I did not have pain or depression, but I started taking Cymbalta based on his recommendation.
I had a prior history of depression and had taken Prozac, Effexor, Zoloft, and Wellbutrin. They all made me hypomanic initially and the psychiatrist diagnosed me with Bipolar Disorder because of my becoming hypomanic. Thank goodness I never took any of the drugs for Bipolar Disorder, like Lithium or Tegretol. I knew those drugs were very toxic. It wasn’t until years later that another psychiatrist casually said, “You had medication induced mania.” By that time, I had figured out I wasn’t Bipolar and it was induced by the medication, but when I first received the diagnosis I felt stunned and wounded and for a few years identified as a “Bipolar” patient. In retrospect, there were times I was quite hypomanic and it was very lucky I did not lose my job, or have my child taken from me. I made decisions I never would have made had I not been influenced by the antidepressants and in an altered state of mind.
As a moderator for the Cymbalta Facebook group, I have learned that antidepressants often cause mania and many people are diagnosed as having Bipolar Disorder from medication induced mania and are not as lucky as I was. They are prescribed more meds to treat “Bipolar Disorder” when in fact they do not have Bipolar Disorder, but are being prescribed more meds to treat a side effect of antidepressants, mania.
Going off those antidepressants was not a problem for me in my early years of taking them. The only one that gave me constant dizziness and a headache when I went off it was Effexor and the psych ARNP gave me one Prozac pill and it made the dizziness go away and I never thought much about it again.
Then comes Cymbalta. After being on it for about 8 years and gaining a lot of weight I decided to go off it. I did not ask my doctor how to go off it because she didn’t want me to go off it. She thought it helped the CFS, it did not help my illness, so I proceeded to try to go off it.
I think I skipped a few days doses and then just stopped it. I became suicidal. I mean, I felt a compulsion to commit suicide that terrified me, and I immediately went back on it. I didn’t know what to do after that and just kept taking it. Somehow, I don’t remember how, in 2019 I found the Facebook group Cymbalta Hurts Worse. The group’s main purpose is to teach people how to safely taper off Cymbalta. The taper instructions were developed 8 years ago by 2 leading psychiatrists and Ann-Blake Tracy, a specialist in adverse reactions to serotonergic medications.
The group taught me the science of how to reduce Cymbalta very slowly and gradually by opening the capsules and gradually taking less of the microbeads inside the capsules. I followed the taper instructions and reduced my dose by 10% about every 7 days. At the time, a 10% taper was still recommended. And since I was not having any withdrawals, I sped through my taper. I didn’t hold my drops for the recommended minimum of 10-14 days and finished my taper in 8 months.
I felt great. I was happy I was finally off Cymbalta after taking it for about 11 years. I had absolutely no withdrawals, until 6 weeks after being completely off the drug. I got SLAMMED with akathisia. Akathisia can be a side effect of psychiatric drugs or a cluster of withdrawal symptoms.
I could not sit still, I had to pace, I didn’t lose my appetite, but I could not put food in my mouth, I could not sleep. I had a massive swirling dizzy headache. I was shaking so fiercely my teeth chattered. My back and arms felt burned in a fire; a symptom I learned is called paresthesia.
My vision was blurry, my eyes could not focus. On the 6th day I was hit with a fatigue so profound I could barely stand or walk. That was my breaking point. I knew the Facebook group stressed that you could not reinstate Cymbalta after being off it for longer that 3 weeks. But I felt completely desperate and took the plunge and reinstated 40 mgs.
It made some of the symptoms much worse, but it also made some of the symptoms better, so overall I felt I had made the right decision to reinstate. I had to adjust the dose twice by 10- 15 microbeads to find the right dose that stabilized me. I went to a walk-in clinic during this time. I knew a doctor probably couldn’t help me, but I didn’t know what to do and was desperate. He told me to go back on my full dose and see my regular doctor. That was useless advice because my full dose had been 60 mgs and taking 40 mgs had made the akathisia 10 times worse.
I was on my own. I knew if I went to the psych hospital for help where I had worked for 18 years, they would have put me on more meds that would not have helped, and I had learned from the group that they would not have acknowledged that I was experiencing withdrawals from going off Cymbalta too quickly. Doctors don’t know that antidepressant withdrawals can be delayed by 6 weeks or even months. Withdrawal symptoms are diagnosed as new psych symptoms.
I figured out a dose that eventually stabilized me. After I hit on taking 100 microbeads which was just a little less than 30 mgs I started to stabilize. Very slowly the symptoms improved. The last symptom to resolve was the profound fatigue. It took 3 months for the feeling that there were 20 lb weights strapped to my legs to go away. And that was when I started to taper off the 30 mgs at 5% holding each drop for the full 2 weeks. It is taking me 4 years in total to taper off 60 mgs that originally had an average of 220 microbeads. The taper instructions have us start to drop by one bead every 2 weeks when we get to 30 beads, but to be extra safe I started to drop by one bead when I got to 50 microbeads. Going off the last 50 beads is taking 2 years.
The horrific withdrawal “incident” shocked me. I hadn’t been very involved with the Facebook group after I got the taper instructions. But now the group had all my attention. I wrote a post about what had happened to me. I wrote that I hadn’t had one withdrawal symptom during my too fast 8-month taper to warn me that I was going way too fast for my brain. I wrote that late reinstatement had worked for me. And then I became a moderator for the group. I was so angry that I almost got PAWS; Protracted Acute Withdrawal Syndrome. If reinstatement had not worked, I would have killed myself because the withdrawal symptoms of akathisia were unbearable and I could have had the symptoms for years.
Since I’ve become a moderator, I’ve learned that the average amount of time it takes for PAWS to resolve is 2-3 years. And no one I’ve ever heard talk about having PAWS says they are 100% healed. They all say they have residual effects for years afterwards.
I became a moderator to help prevent people from making the mistake I made. I don’t want anyone to ever go through what I went through. I got the group to change the rule to recommend tapers of only 5% or less and to hold each drop a minimum of 2 weeks, not 10 days. Not just because of my experience, but after I became a moderator I learned that people finishing 10% tapers were having trouble with withdrawal symptoms at the end of their taper.
As a moderator I have tried to coach some people in attempting to do late reinstatement when they find the group after going off Cymbalta too quickly and are suffering from PAWS. But it hasn’t worked for any of them. It made their symptoms worse and they had to discontinue the drug. I was extremely lucky that it worked for me.
My terrifying withdrawal incident showed me firsthand what an incredibly dangerous drug Cymbalta is. I’ve learned that Cymbalta has a long list of serious side effects. People in the group have had their heart, liver, and vision damaged. Cymbalta can cause diabetes and high blood pressure. It can cause permanent sexual dysfunction for both men and women. It has caused tardive dyskinesia for some. Many people have developed serious medical problems caused by Cymbalta and have to go off it cold turkey. The taper takes 2-4 years and longer and they don’t have that luxury. They have no choice, but to face the risk of developing PAWS.
Up to 78% of people will develop withdrawals. How many people would have ever had the prescription filled if their doctors had told them, they could develop diabetes, high blood pressure, heart damage, vision damage, tardive dyskinesia, permanent sexual dysfunction and PAWS? The simple fact is that antidepressants are considered extremely safe by doctors and therefore are prescribed much too casually and often.
The Cymbalta Hurts Worse Facebook group is anti-Pharma and in the year I have been a moderator I have wholeheartedly embraced that philosophy and teach people how to make major lifestyle changes to treat depression, anxiety and pain with natural remedies. I mention pain, because Cymbalta is now the go-to drug for fibromyalgia. We probably have more people in the group with fibromyalgia than depression.
I have also joined a Facebook group whose members are only other moderators of other medication support groups and have learned that these problematic issues with Cymbalta are also problems with most all the other antidepressants. And tapering off them also can take years to avoid the withdrawals.
I learned that social media and internet medication support groups are saving lives and brains because doctors do not know how to safely taper off psych meds. Nor do they know about the nature of antidepressant withdrawals. Doctors are taught that withdrawals may occur after stopping an antidepressant and that they pass in a few days to a few weeks.
Even emergency rooms don’t know what antidepressant withdrawals are. I know this because we have many group members who end up going to the ER all over the United States due to their withdrawals and doctors tell them they can’t be suffering from withdrawals because withdrawals don’t last that long. People get diagnosed with new ailments and get more drugs thrown at them that don’t help the withdrawals and now they have another drug they need to taper off of.
In addition to doctors not knowing about the nature of antidepressant withdrawals, they are of course ignorant about how to safely taper off antidepressants. They are taught by drug companies how to prescribe these drugs, but not how to get people safely off them. Doctors make-up their own taper rules and take people off Cymbalta in 2 weeks by skipping doses or alternating between doses of say, 60 and 30 mgs. Cymbalta has a half-life of only 12 hours which means the brain will start to experience withdrawals at 24 hours if a dose is late or missed.
The lucky people who find our group in the midst of their doctors’ disastrous taper plans are panicked by the withdrawal symptoms and don’t understand what is happening to them. We have to tell them to tell their doctors they have changed their minds and want to stay on Cymbalta so they can continue to get their prescription until they are safely off in 2-4 years or longer. If people try to tell their doctor about the safe taper and counting beads their doctors scoff at them and refuse to listen and don’t allow the person to do the slow safe taper. There are hundreds of people in the group with PAWS caused by their doctors’ ignorant taper advice.
Compare the taper instructions taught in the Cymbalta Hurts Worse group with the discontinuation advice provided by Eli Lilly in the 33 page Cymbalta prescribing information provided by the FDA: Sections 2.4 and 5.6 pertaining to Discontinuation of Treatment with Cymbalta recommends “a gradual reduction in dose.” That is all that is recommended. How is it possible to gradually reduce the dose when Cymbalta only comes in doses of 60, 30, and 20 mgs? It isn’t. The only way to gradually and safely come off Cymbalta is to spend 2-4 years and longer counting or weighing the microbeads inside the capsules. I don’t think the Eli Lilly drug company knows this. I do know they do not care how to safely discontinue Cymbalta. Add to this horror show, the fact that many doctors and pharmacists think it is unsafe to open the capsules and reduce the beads. They think that somehow the microbeads are compromised by opening the capsules. The beads ae not compromised in any way.
The Cymbalta Hurts Worse group has helped thousands of people successfully taper off Cymbalta using the ingenious taper instructions for the last 8 years. We had a woman in the group who reported that she “begged” her doctor to let her do the slow safe taper. He cut off her prescription. After hearing stories like this repeatedly it made me change my soft recommendation from “many people find it best not to tell their doctor they want to taper” to the much more direct, “do not tell your doctor you are tapering so you can continue to get your prescription.” Most doctors do not respect the taper instructions when a patient tries to tell them they have learned of a safe way to taper. Tapering safely is a battle to save brains from antidepressant withdrawals and the horror of PAWS; Protracted Acute Withdrawal Syndrome and many doctors can unknowingly become the enemy in this battle.
There are 30,000 people in the Cymbalta Hurts Worse Facebook group from all over the world. It is the only source of the detailed information needed to taper off Cymbalta safely. And we provide 24-hour, 7 day a week support for every question imaginable pertaining to tapering and withdrawal symptoms and more.
My experience, of having done a too fast taper without withdrawal symptoms for 8 months, then developing akathisia 6 weeks after being completely off Cymbalta, successful reinstatement and now doing the slow safe taper have given me valuable knowledge about how to help others.
Since becoming a moderator for the Cymbalta Facebook support group, I have learned that there is a hidden silent public health crisis in the shadows all over the world. I now believe that the patients I worked with in the psychiatric hospital for 18 years were very likely suffering from side effects and withdrawals of being taken on and off psych meds indiscriminately because of course when someone was admitted to the hospital it had to mean that the drugs they were on weren’t working.
Research about antidepressant withdrawals is still in its early stages of gaining enough clout to begin to educate doctors. I’m afraid it is too slow to help, what has to be millions of people all over the world suffering from all the different types of agony withdrawal symptoms cause. I am a member of an Akathisia support group on Facebook. I haven’t been a member that long, just four months. In that time 3 people have taken their lives. Having had akathisia myself, for just a short time, I know why they found solace in death.
I felt overwhelmed by the task of writing this summary and trying to articulate what I have learned in my first year as a moderator for a medication support group. Others have written much more articulately and comprehensively about the topic of the dangerous nature of psychiatric drugs and I hope I have been able to convey at least some of the dire situation the trusting, unknowing public faces.
I am outraged by how the FDA, pharmaceutical companies and doctors continue to ignore and remain ignorant of the extent of drug injuries. If my Cymbalta taper had gone smoothly and I had not had the terrifying withdrawal incident, I never would have believed how dangerous these drugs are. It’s only because I had that incident that I sat up and paid serious attention to the complaints about these drugs. I would have continued to just write off the complaints about side effects and withdrawals as rare and blamed “underlying conditions’’ or other factors having caused the problems, and simply not believed the accounts. As is the case with most doctors today.
Unfortunately, it may take more and more doctors or their family members experiencing these problems for them to sit up and pay attention to the trauma and suffering the drugs they so generously prescribe cause.
I will end by saying I’ve been extraordinarily lucky in my use of antidepressants. I escaped committing suicide, I did not have my child taken from me, I did not lose my job, I did not lose my family, I did not become homeless, I escaped developing Protracted Acute Withdrawal Syndrome for years and suffering permanent brain damage.
I have been so much luckier than the people who have suffered irreparable damage and lost everything including their lives. We will never know the statistics for how many people have lost everything because antidepressant use and withdrawals are not part of the conversation. It remains the veiled dark sinister secret of current health care.