By phasing out lamotrigine, known more widely by the trade name Lamictal, and other antidepressants, I have recently ended 18 years of uninterrupted medication use to treat depression. It’s been a rough ride with 20 different psychotropic drugs. I had a few good periods with their help, but for the most part the results have been disappointing.
My recovery started after years of taking antidepressants, years during which the condition steadily worsened. My personal and work lives suffered as I became more prone to dissociation, emotional indifference, irritability and memory loss. Improvement began after I changed my attitude about treatment and stopped expecting Lamictal and other antidepressants to be a primary source of help.
Do I Need Medication or Not?
Since getting better, I’ve continued to believe that the medications had little or no role in the change, but it’s impossible to know for sure. I have wanted for some time to take myself off meds to see if the methods I use to stay well are enough in themselves, or if, in fact, the drugs are also a necessary part of treatment.
It was hard to take this step. The combination of Emsam and Lamictal (and occasionally other antidepressents) had been the most effective of the medications, although even these two had stopped helping after a year or two. Nevertheless, ending medication use completely is a big decision because there is always the fear that I could be wrong.
Is Long-Term Antidepressant Use Good or Bad?
It’s the same fear that kept me on antidepressants for so long despite one recurrence of the illness after another. I was always worried that if I stopped, I would be much worse off. But there was no evidence to support that idea, and I have not been able to find much evidence that long-term antidepressant use is either effective or safe. It certainly wasn’t effective in my case, and more and more stories and research have been coming out raising questions about whether taking antidepressants for decades could actually be harmful.
There are several studies indicating that stopping long-term use of antidepressants leads to a recurrence of the illness, but that finding doesn’t necessarily mean that antidepressants have been preventing such episodes.
S. Nassir Ghaemi points out in his Mood Disorders: A Practical Guide that this could result instead from a withdrawal effect after the brain has built up tolerance for these drugs.
Withdrawal Effects
Whatever the explanation, I braced myself for a possible depressive episode and started phasing out the medications. As I reported earlier, I had no withdrawal problems with Emsam. Lamictal has been harder to deal with, but my withdrawal problems have not been severe.
As many others have reported online, difficulties with Lamictal seem to emerge as you reach the end of the phase-out period. I had no trouble reducing the dose in stages from 300 to 50 mg, but the last reductions have brought on the irritability, fatigue and mental dullness that I had been hoping to avoid.
These symptoms have slowed me down in the last couple of weeks, but I’m prepared to put up with them for a while. I want to see if the recovery I’ve experienced is as self-sustaining as I believe it to be or if it needs the aid of some form of drug treatment.
The Meanings of Medication
I’m still open-minded about the potential usefulness of antidepressants and other drugs, even though there are far more questions than answers about their effectiveness. It’s also hard to think clearly about medication because of the intense conflict around every aspect of their use.
The use of medication for treating depression seems as colored by stigma as mental illness itself. Many people believe they haven’t really recovered if they still need to take medication to feel good. This attitude reminds me of the idea that depression reflects a weakness of character, an inadequacy in your make-up as a person. You ought to be able to tough it out on your own. A depressive mindset makes it hard to reach out for help.
If you do get help, the inner stigma wants it to be short-term, without the need for the “crutch” of medication for the rest of your life. My rational mind doesn’t believe that, but there is a tug of belief the other way too. I do want to feel that I’m well as a result of my inner resources rather than an external aid – that I can pass the “toughness” test.
Taking medication has also become something of a statement about your stance toward the whole field of psychiatry and the definition of mental illness. When I first went to psychiatrists, they did therapy and used drugs only for treating acute illness. Now psychotherapy is becoming more of an elective rather than a requirement in psychiatric training, and many believe that the field of psychiatry is concerned only with biology rather than the larger problems of the human mind and behavior.
The tone of partisanship surround medication use has become intense. I often hear from people who have either been harmed or saved by medication. The drugs are either toxic or life-saving, and psychiatrists get into the battle along with patients.
As Ronald Pies says in his article (How American Psychiatry Can Save Itself), the field suffers from a public perception that psychiatrists don’t pay attention to the emotional needs of patients but only offer drugs to reduce symptoms. Many psychiatrists are challenging prevailing practices about how mental illnesses are defined and the influence of the pharmaceutical industry on the treatment of conditions like depression.
Of course, those of us living with depression don’t really care about the psychiatric profession. We care about getting well and leading fulfilling lives. It seems bizarre that the medical profession we rely on for aid is itself so conflicted about how to help us. And it seems strange as well that there is so much partisanship surrounding questions of whether or not medication is an appropriate treatment.
I’ll keep plugging away at my recovery. If I should take a turn for the worse, hopefully I will be able to make up my mind about future treatment without fear, stigma or partisanship getting in the way.
I was diagnosed 20yrs ago with PTSD, ADHD, Bipolar1 and depression. I was on a very high dose of Effexor, Lamictal, clonidine and clonazepam.
Lately I was weaned off Effexor. The withdrawal was a nightmare. I ended up in the hospital. But as of today I am Effexor free, still going through withdrawal here and there, but all these meds make me feel like a zombie. At age 63 I plan on going off all of them and see as it goes. I have a great guy who supports any decision I go with. I had a tough life but the meds made me feel like I don’t exist
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I was diagnosed with dysthymia, cyclothymia, general anxiety disorder and depression five years ago after a lifetime of emotional and mood “ups and downs” (39 yoa). I’ve been on Lamictal for a little over four years now and have within the last two weeks weaned totally off it. I’m still taking Zoloft but am hoping to do the same with it in the near future. While trying to find some information on what to possibly expect when weaning off the Lamictal I came across this post. I’ve taken an excerpt from your post as seen below and have a question. I’ve read your post a few times trying to make sure that I understand when and how these feelings surfaced and became prominent for you. You wrote:
“My personal and work lives suffered as I became more prone to dissociation, emotional indifference, irritability and memory loss. ”
My question is did you begin to experience the disassociation, emotional indifference, irritability and memory loss as a result of the medication? Or did you feel these things in conjunction with depression, and as a result, began treatment with Lamictal?
A response would be greatly appreciated as then I will know how to move forward with the rest of my thoughts (as they pertain to the drug). Thank you in advance and thank you for this blog. I look forward to reading more and reading the books you have so graciously shared.
Hi, Angela –
It’s impossible to say with certainty whether medication caused the symptoms, though I do believe that emotional indifference is induced in me by antidepressants. It is a poor trade-off for temporarily reducing depressed mood to live with indifference or lack of interest – which is itself one of the two primary distinguishing signs of depression. There were periods when the medication helped briefly with other symptoms. What I am sure of is that those symptoms returned while I was taking medication. At a minimum, then, the medication failed to address those depression symptoms over the long-term.
All my best to you —
John
Hi John,
I admire your courage in sharing your story with the world. I, myself, have been struggling to wean off of Lamictal for the past two years. I began taking 200 MG in 2006 and am now down to 15 MG. It has been immensely challenging for me getting off of what little dosage I still take. I have chronic fatigue, migraines, bizarre visual sensations, and suicidal ideation that comes and goes. I will say, however, that the world seems a lot clearer to me, I can speak much more lucidly (I had a tremendous struggle with word finding when I was at a higher dose), and I feel a whole lot more grounded in reality.
I am curious to know how you are currently faring. Are you completely off of Lamictal now? Do you have any words of advice for someone at the homestretch of almost being completely med-free? Thank you!
I am wondering how you are doing/ feeling after discontinuing use. I gradually took myself off Lamictal(that I had been on for a year) and Prozac (that I had been on for 12 yrs), 10 months ago. I started medicating my mind with the Word of God. I have been on anti-depressants (Celexa, Zoloft, Lexapro, Prozac, Cymbalta, Remeron, Effexor & Wellbutrin), Prozac was the only med that ever seemed to work in 12 of the 22 yrs. As well as anticonvulsants (Neurontin & Lyrica )and antipsychotics (Seroquel & Abilify). I happen to have first been diagnosed with Clinical Depression in 1992, after a 6 month period of Crack Cocaine usage. Ironically, the only med that worked when I would relapse on Crack was the Prozac. In 2006, while in Jail for drug possession I was diagnosed as being Bi-Polar. After a year on Seroquel and having a baby, I took myself off the Seroquel and stayed on the Prozac for fear that I would relapse on cocaine. I did relapse in 2011 only after have several major life changes occur in a 2 month time frame (loss of a child, major surgery, bankruptcy causing loss of home, and ongoing 4 yr long distance family feud, followed by relapse causing marital separation). I didn’t list those for anyone to feel sorry for me, but to say this. I haven’t felt better in 22 yrs than I have off my mental health meds, Percocet & Soma for Fibromyalgia-5yrs, Adderall for ADHD-1yr, and a list of others (15 to be exact). I have been clean for 2yrs today. Off all meds for 10 months. Never felt better at 44 yrs old, than when I was 12/14 yrs of age. I give all credit to Jesus Christ. I think that we have power within us to turn our situations around but it takes time mediating on the word, lots of prayer, patience (some days will be harder than others) and trust in God, not ourselves.
Incredible quest there. What occurred after?
Good luck!
I have been med free for about five years, but would much rather be able to function at all intensities of depression with meds than be med free and debilitated my the next deep depression. My functionality is enhanced at even the deepest depressions I have ever had, which makes meds a mute point. That should be the goal, not whether we use meds or not.
Hi, Tom –
That’s right – living well is the point, using whatever help you might need. I think you’ve defined a goal that is beyond what most people think is possible – to live in an enhanced way with depression, to bring it into your comfort zone, as you say. As Viktor Frankl said, you need to set the goal beyond conventional expectation.
John
Hooray for you! Hooray for you for having the courage to try getting off of meds. Hooray for you for not being a dope about it but doing it as an exercise in accessing your condition. It is all so very individual and you are a positive example of how to personally take on your own depression and your own recovery. I admire all of the things you have tried.
My story is similar to yours in that I have tried a lot of things too. I also refuse to give up searching for better ways to handle this devious disease.
I have taken no meds at all for over two years now. That wasn’t my choice really, the meds just didn’t agree with me and I was forced to give it up. Funny thing, most of the time I am no better or no worse than I used to be on meds. Bipolar is always there, meds or no meds. And so I manage my moods the best I can. When I get bad, and get discouraged I wish there a med out there with my name on it, but there is not.
This is a great journey you are on. I am sure you will learn some interesting things during this time. I will look forward to your reports with interest.
Hi Wendy –
I think we’re both on the same journey. I love your inventiveness about looking for the positive – the moments of relief – the getaways into humor and relaxation. There’s a spark of life that always needs to be kept alive, however we can manage to do it.
John
Interesting and I think it’s great you are trying something new and going med free. I’ve also read about health issues with long-term use of meds that would concern me. I don’t suffer from the kind of depression you do, but was diagnosed with it when I went to a psychiatrist years ago, and his only solution really was medication. I was not really able to tolerate the meds very well, but at last found one I could take. I took it for quite a few years. If I thought about stopping, the psych would scare me into staying on it. I had no idea if it was helping me or not, but followed ‘doctor’s orders’.
I stopped talking medication a few years ago. I’m glad I did. It turned out it was not helping me, but was giving me side effects that I am so happy to be without now. I think the med helped at first, but then stopped helping.
I do think there is some biological connection in depression, but it’s not clear if that is best influenced by emotional work or directly with some kind of substance. For me the emotional work has been key. I’ve also followed a diet for mood with lots of protein and the right kinds of fats, and that helps. As well, I started taking some supplements, and a natural anti-depressant, which gives some help without the side effects of pharmaceuticals.
IMO there are a lot of components to healing depression, and pharmaceuticals are just one possible option. There is so much money involved with big pharma, it seems to be skewing the message that gets out to us about depression and what it is.
Hi, Ellen –
I wonder how many people there are who have had your experience of staying on meds because of “doctor’s orders” rather than any benefit. The problem of tolerance – antidepressants that initially work and then stop – is so well known but its implications don’t seem to be discussed. The prevailing wisdom is to keep taking drugs without much discussion of the overall treatment approach or how to evaluate the methods being used. I think medications should be taken if they’re effective, but blind adherence to a treatment approach that has such a mixed record of success makes me wonder.
John
One difference is the severity of the condition treated. I do think some people owe their lives to drugs. Long term use is always a worry. As is the shrinks turning themselves into pharmacists
Hi, Evan –
Many people do owe their lives to drugs, and continue to depend on them for severe illness. But long-term use is the problem. Many people develop tolerance to medications – of any type – as the body learns how to compensate for the added chemicals by adjusting its own production. This is especially well-known with antidepressants – they just stop working. The answer is to keep shifting meds, but the effects of long-term use of a group of meds that act in similar ways have not been well documented. It is assumed that a medication that has a positive effect in a short trial of 6 or 8 weeks will have the same effect over a period of years. However, no study can predict how an individual will react, so it is very hard to offer general advice. Constant monitoring – and keep an open mind – are essential.
John
Hi, Evan –
I’ve been reading recently that the severity of depression made not be the issue so much as the type of depression. In other words, the DSM has pushed different types of illness into a single broad category, and the profession treats the category as if it were a single disorder. And these different illnesses are treated in the same way. I don’t know if that’s true. It’s so hard to sort through all these claims and alternative theories. Unfortunately, people get so attached to one or another of these explanations that they refuse to listen to the others. Medication has definitely helped many – and saved their lives.
Yes, I wonder if there are qualitative distinctions for depression not just quantitative ones (mild to severe).
There is a conflict in the medical model between the research emphasis on causation and the diagnostic need to recognise clusters of symptoms as a pattern. I think if the right kind of research were done it would probably come up with different kinds of depression. I don’t know of anyone attempting this kind of thing unfortunately
It is only my individual opinion, but incessant worry about what the world thinks about my medication or questioning how good I am if I take medicine is entirely counter-productive and nearly insane.
If I have a biological problem and there is an apparent biological solution, why would I want to concern myself with what all the others think of me or how they judge my humanity. I seek to solve the problem, and if pharmacology happens to help solve the problem, why should I worry about societal condemnation? I don’t want to hear the harsh judgment of a solution on flimsy facts if the solution works.
If the solution is to get off the medication, fine, but that is not good advice to give to a large majority of the people who are currently suffering from biological depression.
Hi, Carl –
Counter-productive and “nearly insane” thinking is exactly what you get when you’re dealing with depression. And the problem of societal condemnation is not the real worry – it’s the shame of internalizing stigma that there’s something fatally wrong with you if you can’t manage your feelings and your life without meds. I’m definitely not advising anyone else to get off medication – and wrote this post to discuss many of the factors that go into this decision. I’m writing about my experience only and need to be true to that – as you are in your quite beautiful blog.
John
Excellent post which touches on how complicated the use of medications for mental illness can be…when my son Dan was dealing with severe OCD and was on six meds at once, I remember thinking, “If he’s this bad off with all these meds, I can’t imagine what he’d be like without them.” Well, turns out the meds were a huge part of the problem, and he only recovered once he was off of all medications…..so you just don’t know. Thanks for the thought-provoking article. I was planning on writing about medication use in one of my upcoming blogs and will certainly link to this post.
Thanks, Janet –
Your story about your son reminds me of the first time I spoke with a doctor who was freshly out of then-new pharma-oriented training. He offered a brilliant and thorough overview of the three medications my asthmatic son needed to take. It was the first time I had heard a doctor prescribe meds to control side effects of meds before they had been experienced. I listened closely, impressed at his knowledge, but knew exactly what would happen when those three pills hit my 8-year-old son’s stomach. He would – and did – throw up. That was it for the meds, but I didn’t have any idea how pervasive and even dangerous this sort of prescribing could become. I look forward to your post.
John
John, I wish you the best in your quest to get off the medication and will be interested to hear how it goes over time. The last time I tried even cutting down didn’t go very well, yet I can’t say I feel wonderful at my normal dosage, either. I think what makes it so hard to try this and stick with it for a while is that it’s not just physical symptoms of withdrawal that you go through, but the mental and emotional stuff that can go along with it and with which the people in your lives have to cope, too. If you could just do this in a vacuum, as a hermit or something, might be easier – but then, that has its own problems and would it be real recovery? I mean, real life isn’t lived in a vacuum. And then, yes, there can be a feeling of failure if you find that you need to go back on meds when really, it’s nobody’s fault. Taking blame seems to be such an automatic thing, maybe because it gives us the illusion of having control over something!
Hi, Judy –
The worst part of withdrawal, as you say, is the effect on those closest to you. My wife and I have worked out a pretty good warning system for each other. With medication changes, I can give her advance notice and an idea of what to look for. We’ve both gotten good at spotting our internally generated anger and anxiety and can let each other know that it’s here – watch out! That tactic has come in handy lately, alas!
John