Disclaimer: this post is not meant to be medical advice. It is a personal story shared in hopes of helping others as they work with their doctor to manage and treat depression, anxiety and chronic pain. The opinions shared are entirely my own. 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 potentially toxic.
Starting the Prescriptions
In 2010 I was overcoming the last persistent clouds of depression from over a year of severe, suicidal depression (my 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 [amazing] new doctor at my first appointment two months ago and we decided it was best for me to come off of these two prescriptions.
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 doctor told me about one woman who went to rehab for drug abuse – and later tried to taper off of her Wellbutrin – 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, “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 pregnancy.
Wellbutrin withdrawal sucks. 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.
Let me tell you: week four for me was positively hellish. I absolutely wanted to quit. 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, 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”.
Week four is just 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.
However, 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. Depending on how the tapering off Cymbalta goes, I may update this post in a month or so.
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