More Support and Information Needed for Getting off Psych Drugs

 

 

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Abstract

Keywords: Mental health, depression, psychiatric drugs, physician-patient communication.
Citation: Giordano T. More support and information needed for getting off psych drugs. J Participat Med. 2011 Oct 24; 3:e48.
Published: October 24, 2011.
Competing Interests: The author has declared that no competing interests exist.
 

After seeing yet more evidence of the long-term dangers of psychiatric drugs, I recently decided that I would discontinue the antidepressant I had been taking the past 5 years. This article is more about what I did wrong than what I did right, and I hope it can serve as a warning to others. Evidently it’s very common for people to run into numerous problems when trying to discontinue psych drugs. Very little information, assistance, or support is available for doing this, perhaps because no one is making money when a patient stops as they do when you start taking a drug.

This is an area where there clearly needs to be much more dialogue and participation between doctor and patient. My experiences with psych drugs, which I believe are fairly typical based on what I’ve learned from my reading and from speaking with other users, suggest that the current situation falls far short on many of the “parameters of participatory medicine.”

As I sought out information on how to discontinue safely, I saw that users of these drugs by and large are not kept well informed about their proper use or discontinuation — not by their psychiatrists, the drug makers or government regulators. I tried all these sources, but it was as if I were the first person to ever try to safely taper down and discontinue. Users of psych drugs are not treated like active participants in decisions, which I suspect may relate to the lower credibility that a “mentally ill” person has in the eyes of others, including some medical professionals. Too often when someone even thinks you may suffer from a mental illness — a term that I despise by the way — they start to treat you like a child. I’ve been there. This can only inhibit the development of productive dialogue between doctor and patient.

What really convinced me to finally get off psych drugs completely were two recently published books, Not Crazy by Dr. Charles Whitfield, and Anatomy of an Epidemic by Robert Whitaker. These books contain compelling evidence of the many dangerous side effects and dependency-producing properties of various psych drugs. When used long-term, such medications can lead to numerous ailments and even a shorter lifespan. But very few users are ever warned about these long-term dangers, perhaps because nearly all the studies of the drugs’ effects are short-term only.

It’s remarkable that despite the skyrocketing use of psych drugs, little seems to be known about exactly how they affect people. Do they compensate for chemical imbalances in the brain or cause them? How toxic are they? Are they addictive? How do you discontinue and what are the withdrawal effects? Why do people who are on psych drugs for long periods tend to become more prone to a variety of illnesses? Do they tend to die young, and if so, why? In spite of this dearth of hard scientific evidence, psychiatrists everywhere seem perfectly comfortable prescribing more and more of these drugs.

What’s more, once you’re on a drug, they don’t seem to want to take you off. Often, one drug is just the beginning, as you find yourself taking another to offset any side effects from the first, and so on. For the past six months I’ve been looking and asking around for a psychiatrist who specializes in taking people off psych drugs. You’re not supposed to stop abruptly — that message has gotten out loud and clear — but little more information is available. I have yet to find a psychiatrist in my area who specializes in tapering down and discontinuing. With the growing need for assistance here, a support group was recently created for by a local peer mental health services agency, Collaborative Support Programs of New Jersey.

I actually have a fair amount of trust in my current psychiatrist, because I selected him carefully after bad experiences with several others. But like most psychiatrists, he seems to be blindly committed to drugs as the sole form of treatment. For several years now he’s been opposed to my getting off antidepressants, insisting that I need to stay on them despite my improved condition. I think he sincerely believes this; he’s been trained and indoctrinated for decades to believe this. He only went along with my plan to discontinue the antidepressant after I repeatedly assured him I felt all right and showed him I was determined to stop.

Ironically, despite my psychiatrist’s glowing endorsement of psych drugs, he hasn’t been able to answer some basic, critical questions about them, such as why I experience immediate and disabling symptoms when I forget a single day’s dose. Several times over a period of years I described to him my symptoms of constant dizziness, upset stomach, and severe fatigue late in the day after forgetting a daily dose. He just said he was surprised and couldn’t explain it; couldn’t he research it?

For people like me the real question is: when you stop taking the drug or reduce the dosage and then experience symptoms such as fatigue or dizziness, are these temporary withdrawal effects, or a return of the full force of depression? My psychiatrist insists this represents a return of the symptoms of depression. And they’re certainly similar.

But I think it’s significant that the symptoms are not identical. My recent symptoms were mainly physical, not emotional. I didn’t feel unusually sad, down or in despair, at least not to the extent I did before taking medication. The main challenge now was summoning the energy to do something, anything. If it involved physical effort, I especially had trouble. And if I did find the energy, I then had difficulty sustaining it, becoming quickly exhausted. After just an hour of moderately strenuous yard work one day, I became so weak that I had to struggle mightily to finish what I was doing. I was close to fainting at times and had to lie down the rest of the afternoon. I usually succumb to afternoon naps when working at home, but this kind of fatigue was just too much. I couldn’t function.

Rather than the stereotypical symptoms of sadness and despair, about the only feelings I’ve experienced above the norm are irritability and impatience. Although these symptoms often accompany depression, I think they may also stem from the fact that, as a result of my near-constant weakness and fatigue, everything is a chore. Even simple tasks can be a struggle — getting dressed, climbing stairs, or just trying to concentrate enough to read something. It tries my patience and just wears me down.

When I began tapering off the antidepressant Cymbalta (duloxetine) in the spring, I certainly expected withdrawal effects, but I didn’t expect them to be this severe or long-lasting. Since I’m still taking the drug, just a lower dose, I’m very concerned about what happens when I stop taking it altogether. But having come this far, I’m not about to give up now and return to the full dosage. Like many consumers, I’m at a loss to know what to think about the conflicting information I see about psych drugs. But I now lean toward believing the critics, who seem to have the evidence on their side. And unlike those advocating the drugs, they don’t have a vested financial interest.

In the dozens of books I’ve read about depression and related disorders, I learned that people who take antidepressants for long periods are more likely to suffer numerous physical disorders (see, for example, Dr. Charles Whitfield’s The Truth About Depression). Withdrawing, in particular, can produce a number of troublesome ailments and symptoms. This was true in my case, as I’ve had an unusual number of other health problems since I started tapering off Cymbalta, including a torn cornea and disc problems. These included a pinched nerve in my neck, producing local pain and stiffness as well as numbness and weakness in my arms and hands. The disc problems are a return of an earlier condition, so I wouldn’t blame that on the drug or on withdrawal, although there is some evidence that depression itself is associated with conditions like these. And I’m suspicious about the torn cornea because I’ve read that eye problems such as a detached retina can result from withdrawal, and drying of fluid in the eye is the most common cause of a torn cornea. Cymbalta is known to cause dry mouth, dry eye, and overall dehydration.

But how can you really know what caused these things? The eye doctor and psychiatrist I asked were of no help. I don’t like speculating like this, but in the absence of good answers to these critical questions, that’s all I can do. The neck condition — a herniated disk that was pinching my spinal cord — required surgery a few weeks into my tapering down, so I elected to suspend the tapering a while to maintain a minimal level of strength because the pinched nerve was also beginning to cause weakness and fatigue. I resumed tapering down a couple of months later upon sufficiently recuperating from the surgery.

It’s curious that following my first episode of depression a dozen years ago, I had little trouble getting off antidepressants. But back then I only took them for maybe 2 years total. And while I took a variety of drugs during both episodes, sometimes two or three at a time, I was never on a drug for an extended period prior to the current 5-year stretch on Cymbalta. From what I’ve read, this kind of longer-term use might produce a dependency that leads to serious difficulties when withdrawing. Apparently, as the drug artificially elevates levels of neurotransmitters, the brain reduces its own production, and over time, it can begin to lose the ability to produce them at all. So the patient suffers as the brain struggles to readjust to a normal state without the drug. This can lead to the dizziness and severe fatigue I experienced.

It’s at this point that my story takes an odd turn. Answers regarding my struggles in tapering down came in a surprising and roundabout way. A couple months into my tapering, I received an email from an administrator of an unfamiliar mental health website saying, “I read in your review of Robert Whitaker’s Anatomy of an Epidemic that you are tapering off an antidepressant. If you are interested in an online support group, you are welcome to join http://SurvivingAntidepressants.org.” Intrigued, I checked it out and read about the experiences of the many website members who’ve used these drugs. To my surprise I learned that the way I was taking Cymbalta was ill-advised for two reasons. One, the reduction from 60 mg to 30 mg in a couple months was too great a reduction in this short a time. Two, alternating dosages every other day can confuse and upset the nervous system as it tries to adjust to a different dose. Either of these things can produce the kinds of severe withdrawal effects I was experiencing.

Evidently my psychiatrist wasn’t aware of this critical information despite the fact that he’s been prescribing these drugs for years. Shouldn’t I be able to trust him to know what he’s doing? After all, he gets $100 for each of my 15-minute sessions. And why couldn’t the drug maker do more — at least, it should provide information on withdrawal effects and safe ways to discontinue. That seems a reasonable expectation in exchange for $187 for each monthly prescription. (Fortunately, I have private insurance that covers most of these fees.) I called the drug maker and read through their literature as well as their website, but the information on discontinuing was essentially, “Don’t stop abruptly” and, “Do it under the supervision of a doctor.” I did that and still had serious problems. Are drug makers and psychiatrists even aware of the adverse experiences of users who discontinue use? Do they solicit this information from users and learn from their experiences?

Anyway, I’ve learned the hard way to be more careful now and taper down very slowly and gradually — no more than 10% at a time with at least 2 weeks between reductions. But it’s not easy to taper down gradually because Cymbalta is only available in doses of 20, 30, or 60 mg, and not in liquid form where you can easily reduce dosages by small amounts. One recommendation from other users is to open the capsules and divide the contents — hundreds of tiny pellets — into increasingly smaller doses, which is extremely tedious and must be done carefully. It’s hard to believe that patients have to resort to this.

There are millions of people using psych drugs now, wondering about the long-term effects and whether they’d be better off without them. They also want to know the safest ways to discontinue. The information and support available to consumers is far from satisfactory — whether from the psychiatric profession, the drug makers, or the NIMH. It’s unacceptable. There needs to be much more accountability and responsiveness to consumers with regard to the safe use, and particularly the discontinuance, of these drugs. Psychiatrists as well as drug manufacturers have a fundamental responsibility to help patients stop taking antidepressant medicines, particularly because use of such drugs can produce serious side effects and prolonged dependency. The drugs may serve a vital purpose for a time, but not necessarily forever. Both the professionals and the manufacturers have abdicated this responsibility.

On a personal note, I’m happy to report that I’ve finally begun to feel less fatigued over the past few weeks. I’m down to 24 mg Cymbalta and will keep reducing every two weeks, as long as I feel all right. With my new-found energy, I have registered complaints about this incident with the FDA and with the maker of Cymbalta, Eli Lilly, which does shamefully little to help users safely discontinue the drug. I’ve also contacted the American Psychiatric Association about the absence of sound information and counsel from the psychiatrists who prescribe antidepressants. I have the sense that my complaints have fallen on deaf ears. Before anything changes, no doubt it will require many more people to speak out and demand a voice in how psych drugs are used and for how long.

Recommended Reading

Whitaker R. Anatomy of an Epidemic. New York: Crown; 2010.

Whitfield CL. Not Crazy: You May Not Be Mentally Ill. Atlanta, GA: Muse House Press; 2011.

Whitfield CL. The Truth About Depression: Choices for Healing. Atlanta, GA: Muse House Press; 2003.

Copyright: © 2011 Tony Giordano. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.

Comments

13 Responses to “More Support and Information Needed for Getting off Psych Drugs”

  1. Tony, thank you for sharing this valuable information through your experiences, perspective and knowledge. You have brought up so many important issues that need to be addressed and the Participatory Medicine movement is providing the perfect forum. So glad to hear you are doing better.

  2. Martha McClelland says:

    The points you raise in your article certainly mirror mine in similar circumstances, especially not knowing whether the symptoms you experience are due to recurrence of depression or withdrawal. I also experienced tiredness, to the point of losing my balance until I rested. I also found the advice from psychiatrists about reducing drugs must be based on their understanding of the half-life of the drug in your system. It maybe be out of your bloodstream in a certain length of time, but the advice to “cut by half for 2 weeks, then half again for a week, then discontinue” is disastrous. I work as a peer advocate and have had many others report similar experiences.

  3. John Sawkins says:

    Tony, I’m glad you eventually found some good advice on coming off anti-depressants. Like you, when I so much as mentioned the notion of coming off my antipsychotic medication (haloperidol) there was consternation from the doctor at the very thought of it. Rather, it was suggested by the psychiatrist that long-term (not specified till when, but implied forever!) I would probably need lithium. That all happened 11 years ago and I secretly elected to discontinue all the drugs. I have not taken any medication since, and I have had no repeat episodes. However, I have since discovered that Haldol destroys the grey matter in your brain. Additionally, I discovered that I had been given the anti-Parkinson’s drug, procyclidine, to combat the side-effects (creaking joints) associated with Haldol. I do hope we can eventually get the psychiatric profession to wake up to the iatrogenic illnesses they are causing(e.g., Parkinson’s, diabetes).

  4. Tony Giordano says:

    Thanks Maria. It’s such a travesty the way so many people are pushed to take psych drugs and then left on their own to struggle with trying to get off. It’s irresponsible and unacceptable. I want to encourage all users to demand adequate information and support for getting off drugs when they feel it’s the best route for them. But I’d like to find other ways to put more pressure on drug companies and psychiatrists to alter their practices. I welcome any ideas out there.

  5. marge wakeman says:

    When i got off Cymbalta I did it cold turkey because it was causing me to faint all the time. That was about 2 years ago. Since then I have been put on Wellbutrin XL and Ambien CR, and Geodon and Klonopin. Working with my psychiatrist and PCP, I have since stopped taking Ambien CR and Geodon, and I am on a half dose of Wellbutrin XL and hope to be off it in less than a month. I will keep taking the Klonapin for panic. I do feel depressed but the meds weren’t helping with the depression anyway. Since dropping the drugs, already I am sleeping better but more tired, but that is because of the depression. I just don’t like the effect of the drugs and I am glad to be ridding my body of their effects. Thanks for your article. It was very encouraging to read it and see that others like myself are tired of psych meds and are stopping taking them.

  6. Maureen Falkowitz says:

    Tony, you have written an article that highlights the many problems encountered by those of us who are dependent on psychiatric drugs and would like to reduce the dosage, especially the lack of support from our psychiatrists. I am currently tapering off Trileptal, an anti-convulsive drug used for bipolar disorder, that I have been taking since 2003. To minimize or eliminate side effects due to withdrawal, it is necessary for me to reduce the dosage over a longer period of time. To reduce from 900 mg. to 750 mg, it has taken months. It is such a gradual reduction that the brain does not react violently as it gets used to the lower dosage. My next long-term project, over a 4-month period, is to attempt to lower the dosage to 600 mg. In this very gradual process, I have not suffered any withdrawal side effects.

  7. Tony Giordano says:

    Maureen,
    I’m glad to hear that you’re able to taper down with few side effects. I’m curious if you’re getting assistance from a psychiatrist? Or if the drug maker is helpful in any way? If not, there are ways to complain and apply pressure, which I encourage you and others to do when necessary– eg you can submit your problem to the FDA’s MedWatch program (http://www.fda.gov/medwatch/safety.htm ). There needs to me much more accountability here from those pushing the drugs.

  8. Altostrata says:

    Tony, thanks for this article.

    There is wide variability in how people tolerate discontinuing medication. Some suffer no or tolerable withdrawal symptoms while others experience neurological damage that can last for a long time, even years.

    The FDA has thousands of reports of withdrawal difficulties, but does not have systems in place to mine the post-marketing data it collects. Several years ago, the drug companies were forced to put warnings about sudden discontinuation on psychiatric drugs, and they consider their legal responsibility to public safety fulfilled.

    Doctors need to recognize that some patients can tolerate tapering only by very small amounts, even a fraction of a milligram a month.

    If your nervous system is sensitive to tapering, it doesn’t mean there’s anything wrong with it, or that you need to stay on medication permanently. It means the way your nervous system reacted to the medication, it needs to accommodate change very gradually.

    It’s a crying shame that patients have to figure out safe tapering on their own. I agree with you; the medical profession needs to pay a lot more attention to this issue.

    I run http://survivingantidepressants.org, and I look forward to the day when doctors will take over the responsibility now assumed by peer support. I am looking for MDs who are interested in discussing gradual tapering with other doctors and developing more sophisticated medical guidelines for tapering.

  9. Mary Newton says:

    Tony and all,

    You may be interested in this website:

    http://beyondmeds.com/

    This is a very extensive collection of first-person accounts and other material related to coming off psychiatric drugs. It’s owned by “Gianna” (screen name), a social worker who was drastically overdosed by a series of psychiatrists who she mistakenly thought were “helping” her. She also ran into the “no good advice” wall when she began detoxing from them, and has tried her best to assemble information that might help others. I admire her tremendously!

    Best,
    Mary Newton

  10. sue genszler says:

    In 1989 I hesitated in taking antidepressants and was referred to an endrocrinologist for thyroid testing which resulted in a TRH stimulation test. The result was diagnosis of borderline endogenous depression (partial blunted response of TSH). For 20 yrs on these meds, last year with terrible fatigue continuing I started on amenphetamine 5mg which helped intially but now ineffective so I stopped the drugs. I slept through my withdrawal. I am now seeking answers and solutions to fatigue. My doc has me scheduled for sleep disorder testing..I just think he doesn I’m hesitating again in considering a naturopath but that is a costly alternative health insurance does not cover. My point is self-care starts with information and persistence.I appreciate people putting their experience out there.Its helpful and at 68yrs, its never too late to pursue answers and quality of life.

  11. Ruth Hetrick says:

    So glad to read this and that this information is finally getting out to more and more people. Please let me know if there is any way that I can help. I took Klonopin, a Benzodiazepine) for 17 years and was told I could just stop taking it, or to take it every other day or reduce it by .5 every 3 days….I tried – it was disastrous. I reinstated and tapered down to .098 and jumped – it was still disastrous. Here I am 20 months later, still trying to recover. My life has been ruined, I have lost friends and don’t know how my future will now turn out. I am 66 years old and don’t have a lot of years left in my future….so very very sad.

  12. Pat Halfacre says:

    I am a mom who is trying to help my 20-year-old son stop taking psych medication. Just beginning this scary journey. He has been on meds since he was 9 for Tourette/OCD. The meds are not helping, so after so many years of multiple drug changes with severe fatigue, and minimal results, he wants to stop!

  13. Nicole S. says:

    Tony, thanks for lending a power voice to this problem. I have found even for emergency withdrawals sometimes with meds other than psychiatric ones that there is a challenge with healthcare providers offering appropriate actions and assistance. There has to be a better way for people to obtain help tapering off any type of medicine. I see this a gap in the system and an unmet need. I don’t feel comfortable sharing in a public forum right now either experience of me or those I know – just suffice it to say – you really did strike a chord with what you shared in this article. I know I just recently had time to peruse your article, but I’m glad I did, even this long after publication. I know it will help others over time as well.

 

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