Monday, March 27, 2023

Comments by Recovered

Showing 62 of 62 comments.

  • I agree with you. The past talk that I am referring to I was in agreement with Dr. Moncrieff in all things except that it seemed she had not yet appreciated the seriousness of SSRI reaction and withdrawal, since at the time she framed it as mild compared to antipsychotics. I am glad to see this article now, since she is such an important ally.

  • I’m taking heart in what seems to be a new direction in Dr. Moncrieff’s work- that of speaking frankly of the damage SSRIs do and the gravity of SSRI withdrawal. I remember a youtube video of one Dr. Moncrieff’s talks a few years ago in which she was unfortunately not so well aware of these risks with regard to SSRIs. She spoke quite in depth about the risks and withdrawal for antipsychotics, but at that time did not believe that SSRIs presented comparably severe risks. It is gratifying to see this now, and I hope she will press on in this direction. Because quite frankly the problem is worse than any psychiatrists imagine.

  • I am continually frustrated by discussions of PPD independent of potential causes. It seems like it’s politically correct now to speak of it as only a mental illness, in a similar manner to how “pillshaming” became a PC buzzword.

    Before zombifying suffering new mothers, doctors and society should be looking for causes! Extreme sleep deprivation, birth trauma, endocrine issues, nutrient depletion (having suffered psychosis from b12 anemia I can say this is a real thing). I mean heck, if they’re going to do blanket drugging on spurious justifications, why not just trial PPD suffering mothers with a bit of b12 shots? Not as much money in that but hey.

  • My sincere condolences for your Lucie. I am so sorry.

    Something about this description of induced hyponatremia is setting off alarms for me– during my long SSRI weaning process, I developed a gastrointestinal condition that made my electrolytes tank over the long term. During that time, my withdrawal became worse and…strange. I’ve never felt quite right about it. I am so sorry for what happened to your family.

  • MedLawPsych, It seems to me you are flirting with logic but just not quite getting there. How can you hope to make a decent risk/benefit assessment when you don’t appreciate how many of the “benefits” are in fact placebo, whether on the part of the patient or the practitioner? How can you make an assessment when you can’t face the gravity of the risks? You can’t assess what you have not accurately measured.

  • I tend to agree. Pharmaceutical companies gave abused our trust by pushing the chemical imbalance theory, but that should not preclude us from understanding that there are physical illnesses that can cause cognitive and psychological changes, some of them connected to nutrition.

    I have lived through this myself: I had longterm severe b12 deficiency, which causes neurological damage that affects your mental functioning in a big way. I’m lucky I was finally diagnosed, if not, I would probably be locked in a ward and full of antipsychotics by now.

  • I understand your points…but consider that most of us have been lied to about what these drugs were doing to us, and for many of us “doing something about it” equaled struggling through years of serious withdrawal, and living with longterm neurological or endocrine effects.

    Also please consider that many of us were drugged as minors. Not so easy for a child to just take charge of a bewildering situation.

    Those of us complaining about the effects of these drugs–we are the messengers.

  • I firmly believe SSRIs are equally as dangerous as benzos. There seems to be *slightly* more awareness that benzos are addictive, and in some ways they are talked about like any other drug for which people go to rehab. For SSRIs, though, they’re still pretty much only talked about as medicine for “chemical imbalances” that a patient needs to heal their intractably broken brain.

    I’m glad Dunham is so forthright about benzos. We rarely have these frank public conversations.

  • What really concerns me is, why are we calling it relapse? How can we assume it is definitely relapse? Relapse implies a return to an original state. What if this is not relapse, but an artifact of withdrawal?

    We know withdrawal can cause psychosis, akathisia, mania, suicidality, etc. So when a patient experiences this, why do we only label it a relapse, and not consider that it might just be withdrawal? Especially in light of the evidence that this “relapse” risk decreases with a slow taper instead of cold turkey.

    I say this as someone who experienced the full aspects of “relapse” while withdrawing. The kicker is I never had those problems prior to drugs, so I couldn’t really be relapsing, could I?

  • One thing I have not yet encountered, is research in how long these metabolic problems persist. I was on antipsychotics as a young person, although I was not psychotic. I swiftly developed metabolic changes. My numbers were not off the charts, and I was young, so doctors ignored them, yet the symptoms were very severe.

    I’ve been off all drugs for 3 years. The last 5 years I was on drugs, I was only on a tiny weaning dose. Yet I still cannot consume any carbohydrates without medication, or I get diabetes symptoms. It puzzles me, because technically I am in the prediabetic range. But if I miss the diabetes medication or eat, say, and extra piece of fruit, I will fall into a stupor, and spend the next few days with frequent urination, eye pain and dryness, and nerve pain. I half wonder if there is something about these drugs that not only induces diabetes, but makes us more sensitive, so that what might be a mild case actually feels quite severe.

  • I also weaned off lamictal at 24. I was also on risperdal, zoloft, and paxil at the same time as the lamictal, so perhaps that is why, but it was the easiest to taper of any of the drugs I had been on. I hope it goes smoothly for you too! And no matter what your calculations are, if the withdrawal gets out of hand, go slower.

  • They absolutely can cause serious harm. One of the fad vitamin regimens out there right now has a startling number of people reporting agitation, paranoia, anger, migraines, and psychosis. It’s marketed as safe, natural, and nontoxic.

    What I suspect is happening is that the fad regimen might be precipitating or exacerbating b12 deficiencies, which are known to cause neurological and psychiatric changes.

    There are also some fad vitamin regimens which are damaging to the thyroid.

  • Unfortunately psychiatrists could do real harm with vitamins, dont doubt it! Alternative practitioners are currently often doing harm with vitamins, because they make these outlandish claims and base treatment on them. I experienced this myself.

    What I think needs to happen, is that doctors need a robust differential diagnostic process before just sticking someone on psych drugs. Patients should be screened for real disorders known to cause cognitive changes.

    I do believe that nutritional deficiencies as a cause of psychiatric change is more common than thought. But I would never trust an alt practitioner to be able to comprehend it correctly.

  • Absolutley. Drugging these children is monstrous, and a very American thing to do.

    I read an article about a doctor who saw some of these despondent incarcerated children, and she referred them to psych wards. She knew they would be drugged there, but thought it better as she assumed they would also receive counseling. I’m not so sure. If forced psychiatric drugging is considered the lesser of two evils, we are in deep shit.

    These drugs can function as invisible cages, and have traumatic effects for years and years. They don’t necessarily just numb someone to pain, they can cut a child off from their understanding of themselves, their emotions, and their relationship to the word around them. And they can actually induce psychosis. How is a traumatized child to deal with all that? It’s nothing short of monstrous.

  • Radish I try always to be compassionate about the situation you describe above.

    The thing that is topmost in my mind, though, is that sometimes psychiatric drugs can cause those same states you describe in your son. I’m not speaking to your particular situation, just that it’s important to realise that drugs are not necessarily helpful, and can do harm instead.

    Can you imagine how it would feel for a young person, who is distressed about life circumstances but otherwise psychiatrically and cognitively stable, to be given drugs, by a trusted doctor, that actually induce psychosis? That cause you to feel suicidal, against your wishes? And it lasts for years?

    I may be a bit different from many commenters here in that this is my primary concern: the high rate of young people who could be perfectly ok if just given a bit of support, instead being given mind-altering drugs to the point they want to kill themselves.

  • I’m sorry that you’re sick of it, but for many of us, this is really important to us. This is not separate from human rights, it IS a human rights issue. Discussing withdrawal also has an immediate and practical application; psychiatry will not be overhauled overnight.

    This is a pretty diverse group. We’ve most of us been harmed by psychiatry, but in various ways. There has to be room for different issues. I welcome more conversation about withdrawal, because that’s what happened to me, when I was still a minor. It’s happening to other people right now, and if we talk about it, we can spread awareness.

    Hearing voices, DID, and involuntary holding are not part of my experience. I don’t complain when those conversations take place though, because they’re important. Within the big picture of psychiatry human rights abuses, we have to be able to talk specifics.

  • I believe it. I was often bedridden when withdrawing too, and at the very least confined to the house. If not for my family I’m sure I would have been sent off somewhere.

    Did you find the CFS symptoms seemed to kick in during withdrawal? Or were they there before? Physically and neurologically I seemed to feel more fragile as I approached 0 dose, and recovery from each decrease was harder. But it’s tricky for me to disentangle that from other health problems I had at the time.

  • Yes, I experienced all of those things many times. It’s hard to give an exact timeline, because it depends on how you count. I spent a few years attempting cold turkey because no doctor talked about withdrawal. Then a year or so halving pills as much as they would go. From there I switched to liquid and spent approximately 5 years weaning off liquid, decreasing as slowly as possible. I still had withdrawal. Then 2 years with neurological issues before feeling more normal.

    I should mention I hear the Recovery movement in psychiatry referred to here sometimes, and criticized. I’m not actually so familiar with what that is. I very specifically mean recovered from psychiatric drugs.

  • “dizziness, nausea, fatigue, headache, electric shock-like symptoms, sweating, insomnia, and nightmares.”

    I’m afraid that only scratches the surface. What about suicidality? Violent urges coming out of nowhere? Tremors? Akathisia? Personality changes?

    Coming off of SSRIs wasn’t just unpleasant for me. It was a drug state unlike anything I’ve experienced in my life, and I can understand why some do not survive it. Also, the brain zaps continued for 2 and a half years after my last dose.

  • I gained 15 lbs in 2 weeks with no change in diet or exercise. From the drugs only. Then the diabetes-like symptoms kicked in- stupor from blood sugar swings, constant extreme thirst and urination, swelling, and endless, insatiable hunger. I found myself having sudden daydreams of eating a loaf of bread whole. I slept for years in 2 hour shifts because of the constant urination.

    I was really young. No doctor ever mentioned or monitored this. And discontinuation was so severe that I was stuck for years on drugs that fucked up my metabolism. I basically had diabetes, but because my fasting blood sugar was normal, it was never noticed.

    I am off the drugs, and my weight is normal, and my appetite is mostly returned to normal. But I have to take medication to be able to tolerate carbohydrates. I have diabetic complications in my nerves and eyes and skin. And the psychological harm from spending my youth overweight, against my express wishes, still lingers.

    I think the psychiatrist did it on purpose, since I had told her I would refuse drugs that caused weight gain. I suspect she saw this as noncompliance and so she lied to me.

  • “We can change our brains, but there is work to do with memory and how we see our place in our families and communities, when we suddenly are able to have options for our lives rather than living in fear states or in many cases with chronic pain.”

    It seems here you are implying that the brain change is always beneficial and any treatment failure is down to the patient not doing the work. But in this article it seems pretty apparent that change was overwhelming and disabling. How can one “do work with memory” if the memory is just gone? Also, it sounds like the psychiatristdi didn’t inform about what the changes might be.

    Psychiatrists should never destabilize people. Using euphemisms like “dynamically tuned” or “dissonant” to explain that destabilization just sets off alarm bells for me.

  • I don’t use the term disability lightly. I would not call several years of unnecessary drugging, then several years of suicidal withdrawal, years of lost work, sexual dysfunction, and diabetes, etc “lucky”…no one who goes through that is “lucky”.

    But yes I am aware how thin of a line it is to tardive dyskinesia and suicide. I was young when this happened to me, and I worry very much about the effects on children specifically.

  • There is another option for tapering, at least with paxil, and that’s the liquid form. There is some difficulty with a margin of error, due to air bubbles or an extra drop clinging to the dropper, but it does allow for a very tiny taper.

    I was on Paxil some thirteen years, the last four years or so of that was a liquid taper. I had spent 3 years already halving the pills; that’s all that was available then. For about two or two and half years after I took my last dose, I still had the neurological adverse effects like brain zaps. Now those are very infrequent.

    Even tapering over *years*, I still had disabling withdrawal and suicidality. Those of us harmed by these drugs against our knowledge deserve disability coverage during withdrawal, and a new rehab model (for lack of a better word) that can provide a safe, quiet place to stick out the worst times of withdrawal.

  • I think we need to be careful, that while psychiatrists have broken our trust, that does not mean all medical care is useless. There are more general health conditions that can cause psychiatric changes, certainly. Thyroid disease, celiac disease, and urinary tract infections in the elderly come to mind. This is not the chemical imbalance theory repackaged. We can reject the DSM without dismissing the reality of psychiatric changes arising from health problems. In fact, I think doctors should pay more attention to this, and that there should be a differential diagnosis process instead of an immediate prescription for SSRIs.

  • I’ve heard cymbalta is an absolute bitch to get off of. Hang in there. I had about 5 years slow taper off paxil, with terrible withdrawal, and then 2 years of brain zaps and mood problems. I feel pretty normal finally though. You can do it!

  • You may be interested in Dr. Joanna Moncrieff’s distinction between a disease-centered versus drug-centered model for understanding the function of psychiatric drugs. The former is basically the chemical imbalance theory- that there is some biochemical deficiency which causes the emotional state, and that the psych drugs correct this, the same way insulin helps a type 1 diabetic. The latter acknowledges that there are many causes of distress, and not all are of biological origin. In this case psych drugs have a drug effect, like alcohol or marijuana, and that might helpful or harmful depending on the particular situation.

    The former is a pretty uncritical view, and leads to exponential use of these drugs and an ingnoranc of their dangers. The latter is more truthful and leads to a much more careful use of psych drugs, and a greater awareness of their potential for harm.

    In a drug-centered model, it doesn’t mean drugs can never provide any benefit ever for someone with PTSD. It just means greater awareness of what they’re actually doing.

  • I’m afraid I don’t see the tide turning, at least not for the next decade. Because of the marketing of the chemical imbalance theory as fact, and because it has been insidiously linked to the destigmatization of mental health, I think most people assume support of the chemical imbalance theory is a social justice issue. Any questioning of psychiatry’s claims has been labeled pillshaming. In their rush to not discriminate against people taking psych drugs, my friends have inadvertently become highly discriminatory toward those of us who have been harmed the drugs and wish to speak out.

  • Yes, I’ve been concerned to see my liberal friends promote the chemical imbalance theory, talk about how their brains are broken and traitorous, and compare psych drugs to vitamins or contact lenses. Lately I’ve seen a lot of talk that anyone who doesn’t agree with this is “pillshaming” or “mental illness shaming”. Although their intentions are noble, this doesn’t sit right with me because it closes us psych survivors out of the conversation. Without our input, more people will come to harm.

    What they assume must be some physical defect in the brain, I see as the effects of abuse on the abused person’s thought processes.

    That said, I think liberals might be receptive to conversations about drug harm, if they are held in a certain way. In the end they want people to be well and functional. They’ve just latched on to a lot of logical fallacies and have been so desirous of not causing harm that they are overlooking reality.

  • I’ve experienced marked cognitive, psychiatric, and neurologic changes due to physiological problems: specifically thyroid autoimmunity, low iron, low iodine, celiac, and low b12. The b12 deficiency effects in particular were pretty drastic.

    My doctors and family wanted me to take psych drugs, but I refused to get on that roller coaster again. Instead, as each health issue was corrected directly, my mental and cognitive health improved. No emotional blunting, no addiction, no induced suicidality, no akathisia, no mania, no insomnia, no memory loss, no increased highs and lows…I just gradually felt sound again.

    It disturbs me that these sorts of health conditions are not on pychiatrists’ radar. They’re not screened for. I’ve only ever met one psychiatrist who was amenable to the idea that my thyroid trouble was causing anxiety and depression and that SSRIs were not the proper treatment. And even he wanted me to do electroshock as a quick, “non-drug” fix. He didn’t see the logical fallacy in that. He though he was helping.

  • Madmom, I just wanted to say I’m grateful every time I encounter a parent who has educated themselves about the dangers of psychiatry, and who fights for their child. It takes an attentive parent to see through psychiatry’s authority to the harm it does. I hope that your daughter is able to wean off these drugs and recover from the trauma, with her family support system to help her.
    I know what it’s like to be the young person going it alone, and my parents never truly bothered to understand or take on board what really happened to me. It’s healing to know there are observant parents out there.

  • When I was a teenager, I went to a psychiatrist who practically made a religion of polypharmacy. When the initial drugs made me worse, she tried to medicate the adverse effects as if they were a new mental illness. I was never psychotic or manic. I did not fit the criteria for antipsychotics. She just used them as a shot in the dark because the SSRIs had failed to magically fix this so-called chemical imbalance, and it was easier for her to write prescriptions then to actually talk to me.

    I refused medications that would cause weight gain, as I wanted a healthy metabolism. This was seen as evidence of irrationality and noncompliance. So she lied about the risk.

    I gained 15 pounds in 2 weeks. This was with no change in diet or exercise, only change was the drugs. I very quickly developed symptoms of diabetes: constant thirst and frequent urination, puffiness, constant hunger that could never be satified, sleepiness after meals, lethargy, mood swings, weight gain, fatigue, high cholesterol, etc. This continued after cessation of the drugs. I spent my 20s 40 pounds overweight and ashamed.

    Because my fasting blood sugar was normal, doctors ignored the signs of diabetes. Given my symptoms and medication history, it should have been in the radar. It wasn’t. It was finally diagnosed through a glucose challenge.

    I am a normal weight now and have been off psych drugs for years but I have to take diabetes medication with every meal. I have to strictly limit carbs and the times of day I can eat. I cannot tolerate ANY carbs without medication. If I eat an evening meal, even with medication, I will get dawn syndrome, neuropathy, frequent urination, and eye problems. I gain weight if I eat extra carbohydrates, even in a calorie deficit.

    The kicker is, I’m technically not even in the diabetic range, I’m still prediabetic. Do these drugs not only cause metabolic syndrome, but also make us more sensitive to it?

  • That is a very interesting point about possible cognitive distortions in physician’s decision-making. I would suggest it’s not just confined to psychiatry. I suspect that I have encountered this in various medical fields, in all major aspects of my medical care. This has convinced me that patients need to be fully informed and need to have as much of a say as possible in decision-making, since patients will be looking through a different lens than doctors and will probably not hold quite the same biases.

  • These are important conversations to have, but much of this advice is disturbing to me. How is it that psychiatrists continually base their plans on such faulty premises? SSRI withdrawal and benzo withdrawal are equally as bad. One cannot be an aid to the other. That is not a solution. Particularly when we also consider the risk of interaction or paradoxical reaction!

    I’d like to talk about sensitivity, since I know it well. In my experience, it was never really possible to avoid serious withdrawal. But I refused any other medications to replace the one I was weaning off of.

    I was put on Paxil in high school. I didn’t need it, and I didn’t respond well. But I didn’t know any better because I trusted my doctors, and the years that followed were filled with some of the most egregious examples of polypharmacy I have ever encountered. All told, I was on drugs for 13 years. The first 8 years were spent on combos of 2-5 drugs, often changed, with abrupt starts and stops. The latter 5 years were spent in slow taper from Paxil. I had tapered off the other drugs the year before, fairly easily.

    I found a psychiatrist who acknowledged withdrawal (most of them didn’t) and he prescribed me liquid and suggested an initial 10% decrease. That was horrific. So was 5%. I ended up with a 1mL dropper, and I would decrease 1/100 of a mL at a time, or within a margin of error. That’s 1/50 of a mg. Even that was enough to give me debilitating withdrawal: akathisia, suicidality, brain zaps, everything. But at that tiny taper, I felt I had slightly more control over the suicidality, and the frank withdrawal would not last more than a couple of weeks at most. Then I’d taper again. Sometimes I’d go a little faster, but never more than 3/100 mL in a month.

    So you see I couldn’t wean slowly enough to never have withdrawal, since even the tiniest decrease caused it. As it was I was weaning for years. Even so, I didn’t feel that replacing one drug with another would be a healthy thing to do. Simply staying on the drug was not acceptable either. Nor did I feel the need to raise my dose back up, like I would have to do with cold turkey or larger decreases. Instead I’d just wait the withdrawal out.

    I was seriously unwell for a year or more after finishing the final 1/100th. 2 years out I am mostly normal, aside from occasional brain zaps, drug-induced diabetes, and a deep sense of traumatic betrayal.

    Withdrawal is the reality of these drugs, and we can’t reliably medicate that away.

    Instead we need a new model of rehab. SSRI withdrawal requires rehab, but psychiatry is seriously slow on that count. I could barely find doctors who acknowledged the existence of SSRI withdrawal, let alone facilities to help me! If the only way out is a slow taper, SSRI patients need a place they can go to be safe when the withdrawal symptoms hit. I didn’t necessarily need a place with a 12-step program or treatment for behaviorally-driven addictions, but I did need a place where my withdrawal could be supervised.

    I always imagined a program that would have an initial consultation where the patient would be educated on the risks of withdrawal, then an initial supervised trial wean as an inpatient, then a return to normal home life once the withdrawal had subsided. Subsequent weans could be done as an outpatient, with the potential to convert to inpatient if it got too severe. Basically the patient stays in touch and comes and goes as they feel necessary. The key thing is that the psychiatric changes would need to be recognized as temporary aspects of withdrawal, and not misdiagnosed as so often happens.

    I suppose some patients will be desperate for anything, anything to curb the withdrawal, and that those patients will actively seek out other medications. But I do not think this should be normal psychiatric practice.

  • I was a youth when I was taken down the road of polypharmacy and spurious diagnosis. By the time I was going through withdrawal, I was an adult, and I knew the wrong that had been done to me, and that it had not come from my own mind. I had to remind myself of that continually as I went through the suicidality of withdrawal.