This is my story of tapering off of two prescription anti-depressants, Wellbutrin and Cymbalta.
Disclaimer: this post is not meant to be medical advice. Please consult a physician you trust before altering medications in any way.
Since my earliest childhood memories, I have been in pain. “Everything hurts,” is a phrase I have uttered too many times for over two decades. Migraines, back aches, numbness, joint pain. Then came the depression and anxiety. My journey to finding relief has been a long one. It has included many different medical professionals and several different medications.
Some medical professionals, especially when I was still very young, concluded my symptoms must be psychosomatic. One or two dismissed my symptoms altogether. Others, after conducting various tests with inconclusive results, decided it was easier to treat the symptoms rather than find the root cause. Until two months ago, I did not know that I have scoliosis, two bulging discs in my C-spine, and carpel tunnel (so it is possible that my lifelong struggle with pain has ultimately made my battle with depression and anxiety more difficult). Neither did I know that my current medications were both highly addictive and toxic.
Starting the Prescriptions
In 2010 I was overcoming the last persistent clouds of depression from over a year of severe, suicidal depression (my abusive boyfriend had threatened me in an effort to keep me from seeking medical help for the depression so it took me a long time before I sought help). I was also experiencing extreme numbness and chronic pain; the kind of pain which dramatically impacted my ability to function. I was in graduate school. I needed my body and my mind to work! So when my doctor said, “We don’t know what’s wrong but there’s a drug I would like you to try”, and it worked, I was only too happy to continue taking it. Thus began my seven years on Cymbalta.
Approximately two years later I was experiencing increased anxiety. Another doctor said it was most likely a side effect of the first prescription so he put me on Wellbutrin to combat the anxiety. When my prescriptions ran out a year after that and I was forced to quit cold-turkey while searching for a new primary care physician, I ended up in the ER because the withdrawal symptoms were so extreme that I wanted to kill myself.
My doctor after that, when I told him that my anxiety had reached an all-time high, doubled my dose of Wellbutrin. I trusted these medical professionals and believed they were doing what was best for my well-being.
I also failed initially to research the prescriptions myself because I was – frankly – barely 20 years old and just so relieved to feel better!
Fast forward to learning that my wacky spine accounts for most of my pain and that it’s possible the prescriptions have begun doing more harm than good. I spoke to my new doctor at my first appointment two months ago and we decided it was best for me to come off of these two prescriptions.
[Side note. Let me be clear before I go on: I am not anti-medicine. Some people genuinely require certain medications to survive and thrive – from blood thinners to psychotropics. I thought I was one of those people after a doctor told me I was “married to Cymbalta”. He was wrong but I give this aside only to say I do not want to appear to shame anyone for being on any medications, especially the ones I’m talking about here.]
I have found that some doctors have a habit of not giving their patients the information they ought to have before taking the prescriptions. Drug companies are also less than honest when it comes to those who consume their products. For example, I just learned that Wellbutrin has a similar chemical makeup to cocaine (it has been called “the poor man’s cocaine” because, when abused, it has a similar affect). Both medications have caused severe addiction issues for thousands of users (although I do not believe they are considered addictive by the FDA) and are considered two of the most difficult prescription drugs to come off of.
My chiropractor told me about one woman who went to rehab for drug abuse – and later tried to taper off of her Wellbutrin – and said the withdrawal was just as difficult from the prescription as it had been the illegal substances she had once used. I have read testimonials from other Wellbutrin and Cymbalta users, as well, who have had similar experiences when trying to stop.
That’s a pretty significant detail that at least three different doctors failed to tell me.
In the past year I have also gained what, for me, is a significant amount of weight. Exercise and dietary changes have done nothing to move the scale. When I asked a doctor in 2010 “could Cymbalta make me gain weight?” the answer was, emphatically, “No”. I received the same answer when I asked about Wellbutrin. I have a history of anorexia and laxative abuse: I needed to know!
I have since learned that both medications can contribute to weight increase but, for Cymbalta specifically, the weight gain may not occur until you have been on the drug for several years. It’s called pill pudge: “antidepressants block acetyl choline, histamine and/or serotonin receptors—and when some or all of these are blocked, weight gain can follow”. Now that I know that, and am coming off the pills, my doctor and I are hoping that my weight will drop and balance out to what is my healthy norm.
It also took seven years and four primary doctors before someone said, “Do not under any circumstances get pregnant while on these medications”. Now I had done some research on anti-depressants and pregnancy/breastfeeding so I assumed that I would need to wean off my medications prior to conceiving a child. But no one had told me about the specific dangers of taking these medications while pregnant until two months ago: studies have not found that the risk of birth defects increases however the possibility of miscarriage may increase, heart and brain development can be affected, delivery complications may become more likely, and breast milk can be adversely affected.
Any prescription will have its side effects and risks so it is important to not only talk to your doctor at length about those but also do research on your own! Check out on-line forums and groups ( like Depression Hurts – Cymbalta Hurts Worse) to get an idea of other peoples’ experiences. I do not recommend making an informed medical decision based on a chat room BUT it can be helpful.
Coming Off the Prescriptions: My Experience with Withdrawal
I am currently at the end of week six for tapering off Wellbutrin. I am following a carefully mapped out plan from my doctor (I do not recommend trying to come off of a medication without the supervision of a doctor). Once the Wellbutrin is out of my system, I will start tapering off of the Cymbalta. I am hoping to be prescription drug free by Christmas at which point I can begin to figure out a new normal for my body – and possibly start thinking about my first pregnancy.
Wellbutrin withdrawal sucks. Suuuuuucks. My doctor told me, “You should be very afraid. Most people want to quit, especially by week four. But you have been through worse and you’ve survived so I believe you can do it”. I needed that brutal honesty mingled with just enough encouragement.
Seven weeks ago I was taking 300 mg once a day. The first week I alternated between 300 mg and 150 mg each day. Gradually, I increased the number of days I had a half dose until by the end of July I was taking 150 mg every day. Now I’m slowly alternating between 75 mg and 0 mg.
Everyone’s experience with withdrawal is different but here are the withdrawal symptoms I have experienced thus far:
- Body aches
- Changes in vision
- Difficulty concentrating
- Difficulty processing information
- Problems with balance
- Over-sensitivity to heat, feeling feverish
- Sensitivity to light and noise (not to the extent of a migraine)
- Loss of appetite
- Panic attacks (these happened when I forgot to take my meds two days in a row but were also partly the result of triggers and flashbacks to prior abuse)
As someone who has had a headache every day since before she can remember, I will say that the headaches I have experienced during withdrawal have been unique; I can tell they are the result of coming off Wellbutrin because for the first time in my life, coffee alleviates some of the pain.
Other people report experiencing withdrawal symptoms which include: seizures, vomiting, aggression, cramps, loss of sex drive, suicidal thoughts, and an increase in the symptoms the medicine was initially prescribed to treat.
I have never been hungover but that’s the best analogy I can think to use: I look and feel hungover. I wear my sunglasses inside. I drink far more coffee than I used to. Sometimes I try to talk and my speech is slurred because my brain is not working fast enough. In the words of a close friend (and I fully agree), I’ve been “a hot mess”.
Let me tell you: week four for me was positively hellish. I absolutely wanted to quit.
Week four is a blur of pain, exhaustion, and confusion. I could barely function and actually had my husband drive me around because I did not feel it was safe to drive. I vaguely remember saying things like, “Why does the sun have to be so bright?” and “No wonder drug addicts don’t want to go to rehab!” and “I don’t feel human” and “Why did anyone ever let me take this drug?!” and “Shhhhhhh…” [to inanimate objects] throughout the week. Since I could not sleep at night and I felt so miserable, I ended up taking two sick days from work (I HATE taking time off) and spent all of the daylight hours asleep which only messed up my sleep cycle more.
But, I made it. Week four ended and that Saturday I felt like a new person.
On the plus side, I have noticed a decrease in my anxiety! I’ve also learned that, while it is used to treat anxiety, Wellbutrin may also “exacerbate anxiety”.
At my last week recheck, my doctor said, “If you can survive week four of coming off Wellbutrin, you can survive anything”.
Several friends have asked me, “If you knew withdrawal would be this bad, would you have started the drugs in the first place?” That’s a hard question to answer considering how very depressed I once was and how severe my chronic pain had become. My answer: I would have asked my doctor for an alternative treatment plan.
Another question I’ve been asked is, “Do you think the withdrawal is worth it?” My answer there is “Yes. 100% worth it.” I am eager to get my body detoxed and cleared from prescriptions. They helped me once but now they’ve overstayed their welcome and I am ready to start another chapter of this journey through chronic pain and abuse recovery.
My husband, family, friends, and coworkers have been amazing during this time of my life. I do not recommend coming off of any prescription that is known to cause withdrawal without a strong support team. I do not fear the process of coming off Cymbalta, beginning next month, the way I did when I started tapering off Wellbutrin because I have experienced so much love and encouragement.
My friends are planning a “Rehab Party” to celebrate being prescription drug free. My program manager has said so many times, “Take whatever time you need” and that definitely sets my mind at ease. My coworkers have relieved me of responsibilities before those responsibilities even came to my attention. Plus they’ve had a full pot of coffee ready and waiting every morning (although, most advocates survive by caffeine anyway).
My husband goes above and beyond every day to help me, whether it’s cutting my pills in half before I’m even awake or doing chores around the house; he’s made me feel invincible. My mother-in-law, who was already an essential oil guru, did a ton of research and created what I call a “survival kit” of oils and oil blends for me to ingest, wear and diffuse to combat my withdrawal symptoms. I have her and lavender oil to thank for being able to finally sleep again. My mother, even though she’s six hours away, checks in on me regularly and cheers me on.
As with all areas of abuse recovery and mental health treatments, find support. You do not have to do this alone.
Be sure to practice self-care, too! One friend suggested that, for mental self-care as I taper off my medicines, I plan a special treat for myself at various stages like going out for ice cream or buying that book I’ve been wanting to read. That has helped me stay focused on the end goal.
Hopefully this post has been informative and encouraging. I know I am not the only one who has faced the difficult decision of how to treat depression, anxiety and/or chronic pain. If you have a similar story, I would love to hear it. [Check out progress updates below!]
For more information, visit the following resources:
Update No. 1: Week 11
I am no longer taking Wellbutrin and I plan to begin SLOWLY weaning off of my daily 60mg of Cymbalta (according to the schedule created with my doctor) by the end of this month.
I took my last dose of Wellbutrin eleven days ago. I felt great for the first few days! Then the weekend hit and I plummeted. I have since learned that it takes approximately 4 days for it to leave the body entirely and then, as the body detoxes, the withdrawal spikes again. It’s been a difficult week, similar to Week 4. I’ve had a hard time functioning: the vertigo-type dizziness has been almost non-stop, sleeping has been difficult, the headaches are relentless. I quote Leslie Knope a lot.
No one can say exactly how long withdrawal will last once the drug has left your system because everyone is different. I’m trying to mentally prepare myself for several weeks of slow progress. In the meantime, I will celebrate the 11 weeks I have conquered and will be back here once Cymbalta and I have begun to part ways. I have been warned that Cymbalta will be harder than Wellbutrin and that is daunting.
Update No. 2: Week 14
I did not anticipate another update so soon. I still have six days before I begin cutting back on my Cymbalta dosage. I’m nervous, to put it mildly. But I also broke through the proverbial wall of Wellbutrin withdrawal and, for the most part, have felt really good for the past two weeks. It’s a nice little break before I plunge back into withdrawal.
However, I have noticed some changes now that the Wellbutrin is completely out of my system. Primarily hormonal changes. I’ve had terrible periods since I was barely 12 years old and I’ve never outgrown acne (and I have tried every cure in the book, from home remedies to accutane) – it just morphed into adult hormonal acne instead of teenage acne. Over the past couple of years, without explanation, my periods have grown shorter, lighter, and generally far more tolerable (as tolerable as it is to bleed from a major organ for 4-8 days every month) and my face has cleared up. As I gradually came off of Wellbutrin, however, I noticed that my periods were getting worse and my (hormonal) acne was getting worse. That is, I was reverting back to my old “normal”.
Now that I’m off Wellbutrin completely I’m back to the long and heavy, painful periods and the monthly acne flareups. I can’t say I missed either one but now that I’ve put two and two together, the changes make sense.
So, if you menstruate or have acne: if you notice changes while taking or coming off of Wellbutrin, that could be why (my birth control is non-hormonal but hormonal birth control can have similar affects so be aware of that). If you have concerns it’s best to talk to a medical professional.
The other side effect I continue to notice now that the Wellbutrin is gone is that my skin – namely my chest, shoulders, upper arms, and back – is incredibly ITCHY. It’s not dry. There’s no rash (yet). It’s just a constant itching that I cannot explain. Being on Wellbutrin can make people itch when they are taking it (although that could also be an allergic reaction). I do not remember that happening when I started taking the medicine but it’s sure happening now! It could also be psychosomatic itching as a result of the withdrawal (individuals experiencing withdrawal from cocaine may have extreme itching and Wellbutrin, as mentioned above, has a similar chemical makeup to cocaine). In other words, my brain may be detecting an itch but my skin is not actually itching. Whether my brain is tricking me or not, I might need to duct tape oven mitts to my hands like Phoebe Buffay to avoid scratching.
(Follow up on the itching: my doctor told me it is an anxiety reaction and you can read more about that here. Only now do I realize that I have rubbed my collar bones for years when anxious. It’s been so automatic. Like a quirk, not a coping mechanism. My doctor recommended I wear a chime necklace and/or use essential oils. The necklace helps when I remember to wear it; the oils have definitely helped. Talk to a doctor or therapist if you feel you may be experiencing something similar.)
Update No. 3: Week 15
I had a good run between the end of my Wellbutrin withdrawal and the start of my Cymbalta. What was that…two weeks of feeling human? It was a beautiful thing.
Today is Thursday and on Monday I began the process of tapering off my Cymbalta. Hear me now: it’s been just over three days. Just four smaller-than-usual doses of Cymbalta. I’m following doctor’s orders and weaning off rather than stopping cold turkey. And I feel unspeakably terrible.
Wellbutrin Week 4 terrible. Worse than that.
Monday I had a type of headache I recognized from the Wellbutrin withdrawal but it was not unbearable. I did not need much more than a cup of coffee to keep myself going. Tuesday was worse: raging headache, no appetite, fatigue, and agitation. Wednesday I wondered if I really have what it takes to come off this drug. I could not handle light or noise. I did not want food. I was exhausted and irritable and eventually wondered if what I could see was real or if I was hallucinating (thankfully that happened late at night in bed, not while driving).
But I was determined to push through.
Speaking of his own experience with Cymbalta – side effects of taking the drug as well as what it was like coming off – James Evans writes:
“…it felt as if it [Cymbalta] was handed to me without warning, without indication of what it would take to quit. One in ten Americans are on antidepressants, and medication can be a viable, beneficial, and sometimes life-saving option for those suffering from clinical depression; it’s important, though, that patients are armed with a full understanding of potential side-effects, both while they’re on a drug and if they should choose to come off it” (from The Withdrawal I Experienced After Quitting Cymbalta was Worse than My Depression)
Today is Thursday, as I said, and I stayed home from work. Today, withdrawal feels like the flu. My newest withdrawal nightmare began today in the form of sudden, gut-wrenching diarrhea. So fun.
I know that getting a drug this debilitating and toxic out of my body for good is a battle worth fighting. I will keep telling myself that. I have said to many hurting people in the past, “You are worth fighting for.” Now I have to say that to myself. Daily. Hourly. I am worth fighting for.
My husband encouraged me to call my doctor and talk about slowing the tapering down more. I did because I’m about to go on-call at work for four days and I cannot be sick in bed for that. My doctor suggested I go back up to my original dose and then at my appointment next week we will talk about the next step. I went from 60mg of Cymbalta daily to 30mg and now we know that’s too fast.
Update No. 4: Three Weeks Post-Cymbalta
It took four months to taper off of Cymbalta. I came down from 60 mg (after my initial failed four-day attempt, as described above) and on December 29 I took my very last (5 mg) capsule.
For roughly the first two months, every two weeks, I dropped ten milligrams: 60 mg, 50 mg, 40 mg, 30 mg. Then I dropped five milligrams every two weeks, starting with 25 mg. The drug companies only sell capsules in 60 mg, 30 mg, and 20 mg and pharmacies cannot sell them in any other form due to copyright laws so my husband played chemist and transferred tiny beads from capsule to capsule to create the correct dosages. I ordered empty gelatin capsules off Amazon but you can find them in health food stores, as well (not a lot of chain pharmacies carry them and I got some weird looks when I asked at places like CVS). We looked at charts that people have created and posted online to show how many beads are found in the 60 mg capsules vs the 30 mg vs the 20 mg but each chart varies because no two drug companies produce identical capsules. Some people prefer to take beads away as they taper. My husband started out by emptying all the beads from a 60 mg into a bowl and dividing them evenly into six empty capsules – counting as he did so – to create 6 10 mg pills. He was then able to build the supply from there.
For me, this method of tapering was very manageable. I had a hard time then – and even now – gauging the withdrawal, however, because there were some extreme external challenges while the Cymbalta was leaving my system. For example, I discovered early on during that four month time period that I was being stalked and the stalking did not cease until about a month before I was completely off the medication. Therefore, I cannot be sure how much of the mental and physical strain I was feeling came from the withdrawal or the trauma of my circumstances.
One week of withdrawal that was especially bad – and I know directly correlated with coming off the medication – was the week of (American) Thanksgiving. I spent a lot of time in bed with migraines, just feeling crummy all over, and did not have much of an appetite.
In fact, I had no appetite and ate very little for a couple of months while tapering off the Cymbalta yet continued to gain weight; a depressing phenomenon my doctor decided to investigate via a blood sample. She tested for a variety of things, including thyroid issues and poly-cystic ovarian disease. I was clear on both of those but the Cymbalta, it seems, has raised my testosterone levels [slightly but] just enough which means that my weight is going to either steadily rise or plateau but NOT go down as long as the medicine is in my system. In other words, this 30lb “pill pudge” I’ve come to loath is the proverbial 20-something brother-in-law who came to visit at Christmas but still hasn’t left. I’ve read many accounts online of people who have gained anywhere between 20 to 60 lbs while on Cymbalta, even while exercising regularly and eating healthily. It’s discouraging and, for someone like me with a history of an eating disorder, it’s a challenge not to pick up old habits like starving myself. My doctor has said that I may not see a change in my weight until the medicine is 100% out of my system and that could be another 2-5 months. For the time being, I hate the way my body looks.
Almost a month out from my last dose of Cymbalta, the withdrawal is not as difficult as I had imagined. I won’t say it’s been easy; I have felt sick every day. One night, I became very anxious and agitated and wanted to hurt myself. There have been a few nights were I became restless and could not sleep. And I’ve had a migraine every day. One of the strongest, most debilitating migraines I have ever had came two weeks after I finished my Cymbalta. To combat this – and keep me functioning like an adult human who can’t stay in bed all day, every day – my doctor just put me on Topamax. I was on it ten years ago for my migraines, prior to starting Cymbalta and Wellbutrin, and it worked beautifully. I’ve been on it now almost a week. The migraines have lessened in severity and in frequency. Bonus: the most common side effect of Topamax is weight loss.
Two birds. One stone.
Of course, now that I’m not taking it regularly, the original symptom that the Cymbalta was prescribed to treat are back: for me, that’s chronic pain.
For others who stop taking Cymbalta and/or Wellbutrin, that often means an increase in feelings of depression and anxiety. I’ve battled depression and anxiety, too. I understand how debilitating mental illness can be. How alienating it can feel. In many ways, it’s worse than a physical ailment because it cannot be seen and, therefore, it is not always taken as seriously.
As I mentioned at the very beginning of this post, some medications work for some people but some do not. You need to work together with a physician you trust to find the treatment that works best for you. And you deserve to be treated with respect and full honesty in the process. Educate yourself. Find what works for you.
I want to end this post by saying that, if you want to come off of a psychotropic medication, please know that it is possible. I am so thankful that I was able to get two very toxic prescriptions out of my body! The hard work and withdrawal has been worth it. However, it is also extremely dangerous to stop taking any medication – especially a psychotropic one – without proper supervision, appropriate tapering, and support. It is important that you do it safely and with the aid of a medical professional.
I experienced heightened anxiety at various points of the tapering process for both of these medications. I also wanted to harm myself at various points of the tapering process for both of these medications. In moments like that, I wasn’t calling my doctor. I was turning to my husband. I was texting my friends. Do not do this alone.
I get that it’s tempting to go the quit-cold-turkey route. Please do not do that. Put in the time and the effort and the doctor visits (and, yes, the extra expense that comes with it) to be sure you’re giving your body (and your mental health) the right support.
I started the tapering process halfway through 2017. Now it’s 2018. And I’m psychotropic “drug free”. One of my goals in this new year is to get some additional counseling for my past trauma and abuse. I think coming off of these medications, in a strange and round about way, has given me the courage to do so. I was carrying toxicity around in my body without even knowing and, through a lot of patience and hard work, I got rid of it.
To me, that’s a picture of how we heal from the trauma of abuse. Abuse – violence, assault, hate, neglect – it’s all toxic. It enters our bodies and our souls. It sits inside of us and it affects us in ways we don’t even realize and it becomes a part of who we are and yet it does not change who we are. It cannot change what we are. And we can banish it. We can overcome it. Not overnight. Not without pain and patience, hard work and heart ache. But, though it may overwhelm us, it will not define us.
I have seen what my body and my mind are capable of overcoming. I’m stronger than I thought I was.
You are stronger than you think you are. Be well, friends; body and mind.