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Comment by GordonS | Hacker News Reader

I recently tapered off a dosulepin, a tricyclic antidepressant.

Holy christ, I was not prepared for the 2 weeks of absolute hell that ensued - intense vomiting, headache, small visual and aural hallucinations and malaise like I've never felt before. I barely got out of bed for the first week, and ate nothing. Several times I was on the edge of going to hospital because I felt like I was dying. Honestly, possibly the worst 2 weeks of my life.

I later learned that it seems it's actually well known amongst patients that coming off of antidepressants can cause withdrawals - tricyclics, SSRIs, SNRIs, NRIs, anti-convulsants, all of them.

The thing is, out of ignorance a lot of doctors simply deny it's possible. This kind of thing infuriates me - when doing pharmaceutical trials, the manufacturers must have come across instances of patients going through withdrawals upon cessation, but somehow that information never makes it to the papers, the leaflets or the doctors.

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Tricyclics are the absolute worst. They were the first generation and are very rarely prescribed for their on-label usage anymore because the side effects just aren't worth it. SSRI/SNRIs aren't much better though. Adult use is one thing but giving this stuff to kids is seriously messed up. I was raised on a cocktail of Prozac, Wellbutrin, Lexapro, Cerezone, Zoloft, Depakote, and Vivanse from the age of 9 years old that I am certain caused profound physiological and mental issues to this day, yet they are still pumping kids full of this stuff. We are literally giving pharmaceutical grade meth to kids just because they can't sit still. This has to be the symptom of a sick society.

> They were the first generation and are very rarely prescribed for their on-label usage anymore

Yes, I wasn't taking it for depression, but for chronic neuropathic pain (it didn't work).

I'm on Amitriptyline for pain management. Did you do a hard stop or taper off over the two weeks?

I'd only been taking it for ~4 weeks, then tapered off over 1 week.

A good book to read about this is Lost Connections. It was a really eye-opening look at other methods to treating depression (and really views the increasing rates as an over-diagnosis, such as if grief of a death lasts over a year, as well as a cultural issue). He talks about how over-prescribed anti-depressants are, especially to younger people, as well as withdrawal effects and the fact they barely beat out placebo in clinical trials.

I've been dealing with a severe case of major depression for the last five years. I've been on every class of anti-depressant under the sun, at one time being on five different medications at once. None of it was able to fully lift me out of a depressive episode. ECT (electro-convulsive therapy) was the only thing that was able to bring me back to anything resembling happiness. Lexapro was the sole medication where the benefits outweighed the side effects, so these days I'm just on that and Adderall for ADHD. Those, along with a SAD lamp to help regulate my circadian rhythm throughout the year is much more effective than any other combination I've tried.

Unfortunately, it was hell trying to convince my psychiatrist that I needed to be weaned off the other medications he had put me on. I had to do the research myself on how to safely do it, then weened myself down to just Lexapro and Adderall on my own. He was absolutely shocked when I eventually told him that I'd been on just one antidepressant for four months straight.

If I ever have another severe depressive episode (highly likely), I'm going straight to ECT. I've done two rounds of ECT over that last 3 1/2 years, and it's been two years since my last round. The medication and lifestyle changes I made (again, against doctor recommendation) seems to be working well to keep my mood relatively stable, though I still have relatively minor periods of depression each year that last a few weeks each. The medication cocktails with all of their side effects and withdrawal symptoms just aren't worth it, especially when I get depressed enough that my life is literally on the line.

I recently got put on an tricyclic (1 week in) and this worries me. I suspected withdrawals anyway, but reading this makes me think to stop taking it directly. Thank you.

"but reading this makes me think to stop taking it directly. Thank you."

If you suspect the competence of your primary caretaker to administer an effective therapeutic regimen, (a valid worry) I would find a second opionion from another doctor. But not from an internet forum...

There is a lot of value in reading (a large amount) of anecdotal experiences with withdrawal, as a distressingly large amount of doctors either doesn't remember or for whatever reason doesn't care that it is the case. That being true, it's easy to find yourself in a situation where even your second opinion says that you have nothing to worry about, when in reality you do.

Sure. But I think one of the keys in fighting depression is to find primary caretakers you trust. Healing process is really complex, and the patient-caretaker relationship - especially in mental illnesses - is a non-trivial component.

Hence, it's important you can trust the caretaker.

My advice was given in this context - it's not as important to find a withdrawals symptom expert than it is to find an expert that you can trust.

This is not to belittle withdrawal symptoms, but just to observe that in many cases they are not the most important concern of the parties in the healing process.

The pharma trials are a joke. There is pressure on researchers to obtain positive results. Then, pharma companies select which results they want to share. Negative results often go unpublished leaving the doctors and the public uninformed.

https://www.scientificamerican.com/article/trial-sans-error-...

I have done plenty of research on this. I have friends who are pharmacists. Doctors don't like speaking up as it can ruin them. Many of these people have really high debt and simply cannot afford not making $100k+.

This is the real problem. And the consequences are more devastating that most people think. Families and lives destroyed because they don’t understand what they are getting into, and doctors are not much help.

I think you're under estimating just how hard it is to prove that an anti-depressant works. The placebo effect is massive. The tools to measure depression are more qualitative than quantitative. That's why a number of pharma companies have abandoned neuroscience entirely.

Yes, you only need 2 positive phase 3 trials to get your drug approved. Yes, you could have done 10 others and had them fail. Yes, the FDA already knows this.

The FDA is willing to approve drugs for depression with much weaker data than say, cancer, because if they held them to the same standard, no drugs would be approved at all.

> The FDA is willing to approve drugs for depression with much weaker data than say, cancer, because if they held them to the same standard, no drugs would be approved at all.

Then maybe we don't need drugs approved?

A drug that has some evidence it works for some people is better than no drugs at all.

I don't think that's obvious at all.

It will be true some of the time, but there's lots of room for a drug to do more harm than good in that situation.

The problem isn't their effectiveness versus a placebo but patient selection. Each drug helps a small subset of all people due to natural variations in brain chemistry but does nothing or hurts everyone else. Until we have the technology to properly identify which patients qualify for a clinical trial, the option is between letting people suffer without recourse or dealing with follow on problems like overprescribing and addiction.

The FDA knows how much more complex neuroscience is to develop drugs for and has chosen the latter option as an ethical necessity.

I had to try at least a dozen antidepressants to find out that Lexapro was the only one that noticeably worked well enough to be worth the side effects. When my sister started suffering from depression as well, her doctor actually had her ask me about the medications that worked best for my depression. Lexapro ended up being effective for her as well, and she avoided the same process I went through because they were able to use the genetic clues to at least find a good starting point.

I can say with absolute certainty that I would be in a far, far worse position in life without lexapro. Others were far less effective, but it absolutely turned me around.

I'm not totally familiar with the placebo process. Are there anyways you could throw off the process like having the placebo doctors be really mean and the drug doctors be really nice? Is everything completely randomized in terms of people that are taking the drugs? IE if there was a magic formula for determining that an individual is more likely to respond positively to placebos could they pick those people?

Double blinding is supposed to prevent this. Nobody who sees the patient should know which patients are taking the placebo (person A puts either placebos or treatments in bottle X, person B gives patient X the bottle).

Yes, it seems that other people are more susceptible to placebo than others.

It is likely there are portions of the population, who have a better response to a placebo than to the actual drug - but! - the reverse is also a likely scenario. I.e. there are people who don't respond to a placebo and show a strong therapeutic response to an actual drug.

Hence, if one is capable, one should always have an active attitude to ones treatment - what works for someone else, may not work for you, and vice versa.

I hope someone can dig out the reference to this... I read this from a reputable source, but damn if I can remember from where anymore.

I'm consistently amazed at how doctors aren't required - at least in Australia - to talk about side effects or withdrawal symptoms when prescribing medication. I'm capable of googling things, but it shocks me how none of this has ever been discussed with me when getting medication. Pharmacists will ask you questions to determine any contraindications, but I've never been spoken to about withdrawal or side effects. Half the time people find out about them by experiencing them.

I started taking Lexapro a few days ago. My psychiatrist and pharmacist went over all the side effects in great detail, but never once mentioned the possible withdrawal problems. I already knew something of them through a friend who's been through that with Lexapro and other similar drugs, but still—not one word from the "professionals".

(This was in the US)

Another anecdata point (also in the US): My Doctor DID go over the withdrawals with me when prescribing me Lexapro.

Pro-tip: Don't miss a day. :)

Lexapro doesn't have as severe side effects, its one of the new ones that shouldn't kick you round as much. It is still best for them to taper off the end of usage.

Yep, same in the UK - I've spoken with several GPs and consultants across specialisms about dozens of medications I've tried, and not one has ever even mentioned withdrawal symptoms.

When I spoke to my GP after this episode was finally all over, he clearly didn't even understand the mechanisms behind receptor tolerance withdrawals. I know GPs are by "definition jack of all trades", but I was still somewhat shocked.

He also seemed to think I was over-reacting when I told him I wasn't going to try any more NRI-type medications, which suggests he also doesn't even understand how severe withdrawal symptoms can be.

Hope you find a more competent doctor.

I realize I got lucky with my GP here in the States, but he did talk about things with me when I went on phentermine to help with weight loss. All the withdrawal symptoms, why I must stop taking it every three months, etc. He even went over every result in my blood work and thoroughly explained each. I think I was in that appointment for two hours, and it was amazing. I wish more physicians were like him, though I also realize they're pressed for time a lot of times and such, which doesn't help.

This isn't amazing. It is just a matter of priorities. There are many other things that need to be addressed first to ensure the patient gets onto the therapy they need. In my experience counselling people about interventions far more complex and risky than starting an anti-depressant, it is clear that 99% of people don't want a branching tree exploration of every eventuality. They get information fatigue very quickly. Ultimately, there needs to be some trust between doctor and patient for things to function in any real sense. This is why I personally loathe the word 'client' in lieu of patient - it recasts the relationship in harmful terms in my opinion, splitting the therapeutic alliance that should exist into some slightly adversarial union of compliance on the provider's part and due diligence on the client's part.

Well, information overload has never been an issue with my doctors - quite the opposite.

My doctor has no idea how the meds he prescribes me actually work. You talk of information overload, but my doctor provided no information about the meds, their effects, side effects or withdrawals. For one of the tricyclics he said "these will kill you if you take too many", but that has literally been the total information conveyed.

Regardless of information overload, doctors should at least understand the basic mechanics of how the drugs they prescribe actually work, and understand the body's mechanics of tolerance and withdrawal - and be capable of having a brief conversation about them with patients.

I started an SSRI a couple of months ago to help treat major depression and anxiety. My GP went over all of the side effects and potential health risks, timelines, as well as its severe withdrawal symptoms and that if I wanted to stop I should slowly wean off it by lowering the dosage (cutting the pills in half for a while, then quarters, etc). This was in Sydney, so some at least do it :-)

If you can find access to a psychedelic like LSD/mushrooms, it is more likely a far more effective treatment for anxiety & depression than any SSRI's available.

Microdoses can be very effective and a regimen only needs to last a handful of doses and stopping would have very little side effects. As long as authenticity of the substance can be proven, generally psychedelics are very safe, especially at microdose levels.

A little googling for psychedelic + depression will provide data. A couple of research/articles below.

https://journals.sagepub.com/doi/pdf/10.1177/026988111667551...

http://www.biblioteca.cij.gob.mx/Archivos/Materiales_de_cons...

https://www.google.com/amp/s/amp.businessinsider.com/psyched...

Please don’t pretend to be an expert in something like this. These things can be life threatening and you are suggesting using speculative treatments that may or may not work.

> These things can be life threatening

Hallucinogens aren't 'life threatening'

Suicide is, and untreated depression can lead to death by suicide.

"If you can find access to a psychedelic like LSD/mushrooms, it is more likely a far more effective treatment for anxiety & depression than any SSRI's available."

That's a horribly irresponsible thing to say.

Even though psychedelics look like a promising therapeutic regimen to some people, they should be administered in a therapeutic setting with the supervision of a psychiatrist or therapist, in the least.

Given depression patients have limited energy to do anything, the energy reserves would be far better spent in finding a good therapist rather than sourcing illegal substances.

"As long as authenticity of the substance can be proven, generally psychedelics are very safe, especially at microdose levels."

Please stop.

The most important thing a depressed person needs to do, is to find the professionals with whom they can begin the healing process. Finding a good psychiatrist and a cognitive behaviorial psychotherapist would be my first prirorities.

I'm not denying your claims. But most western societies have primary care pathways to deal with depression in a competent and effective way.

This is not a 100% guarantee, like you could give in a trivial medical matter. Mental illnesses can be really difficult - hence you will always find individuals from whom nothing works. But lot of people get help through the "official" methods - hence that should the first strategy for anyone suffering from depression.

Potential downside - the more aware you are of side-effects, the more likely you are to experience them:

> It has been shown that, due to the nocebo effect, warning patients about side effects of drugs can contribute to the causation of such effects, whether the drug is real or not. This effect has been observed in clinical trials: according to a 2013 review, the dropout rate among placebo-treated patients in a meta-analysis of 41 clinical trials of Parkinson's disease treatments was 8.8%.

https://en.wikipedia.org/wiki/Nocebo

In the UK all medication must come with a patient information leaflet, and they usually talk about the side effects that they picked up during testing or (I think) from the Yellow Card scheme.

It's really important that people fill out yellow cards when they experience side effects. I don't know if anything similar exists outside UK: https://yellowcard.mhra.gov.uk/

Thanks for pointing this out, I had no idea about this - I've got a lot of reports to submit!

What fascinates me is how easy doctors are on the starting but they don't really explain in advance how subtle the ending. Apparently SSRI safe taper off is 10% decrease per period (year, semester, maybe less). That's a very long time to get off them fully. I wish they told me in advance.

If they told you that you wouldn't have taken them.

That's marketing trick, not medical advice.

The first anti-depressant that worked for me was a tricyclic. When I came off of it, holy God was it bad. I've had a lot of bad withdrawals in my day -- but coming off of Pamelor was maybe the worst.

> The thing is, out of ignorance a lot of doctors simply deny it's possible. This kind of thing infuriates me - when doing pharmaceutical trials, the manufacturers must have come across instances of patients going through withdrawals upon cessation, but somehow that information never makes it to the papers, the leaflets or the doctors.

My take on it: nearly everyone is hyper-focused on abuse of drugs, meaning recreational potential, and it distorts everything else in health care.

We severely overstate the side effects and negative outcomes that occur when a particular drug is used recreationally, and trivialize or ignore those very same side effects and negative outcomes when the exact same drug is used at the same dosage in a medical setting.

And we do that because side effects / negative outcomes have essentially become our way of automatically punishing and imposing a sort of moralistic judgement on people for abusing drugs. If bad things happen after you abuse them, it's your fault and you deserve it. If you weren't doing anything wrong, you don't deserve punishment and therefore those very same side effects somehow won't even happen.

We have so thoroughly conflated "recreational" with "dangerous" and "bad outcome", and especially with the concept of discontinuation symptoms or withdrawal, that the mere intent of the user is effectively being treated as the determining factor for whether something bad will happen, rather than the substance itself.

As a result, even the possibility that those kinds of problems could occur with other medications that have zero recreational potential, is routinely ignored. Those are things that happen when you abuse drugs, not when you take them for medical purposes. After all, you weren't doing anything wrong.

You can see that in action when people have a moderate injury that requires surgery and a lengthy recovery, along with several weeks or months of opioid medication, people who have no real awareness of what physiological opioid dependence is. I personally know people who developed severe withdrawal symptoms after they stopped taking their medication, who were told by their own doctor that they were addicts and must have been doing something wrong, because those symptoms occurred.

And on the flip side I couldn't even count how many people I know who have stopped taking SSRIS or SNRIs, hit an almost immediate wall of insomnia and serious psychological symptoms, and were told that they were imagining it.

Did you stop cold turkey? Both times I've stopped taking meds I've been instructed to do it gradually.

I tapered off over the course of 1 week, but I'd only been taking it for 4 weeks.

Taping off over 8 weeks or more is much easier. 1 week is just not enough, it's basically cold turkey.

As I said, I'd only been taking them for 4 weeks.

It was also my doctor's advice to do it over 1 week, and I'd come off other tricyclics and NRIs before over the course of 1-2 weeks, so I really had no idea what was coming.

If I ever had to come off anything like this again, I'd absolutely do it over a longer period - but I won't; these kind of drugs haven't help me, and after what I went through I will never take another again.

I agree with what you say. Your doctor didn't give you enough information; then gave you not great advice; then didn't believe you about discontinuation / withdrawal.

It's weird that people are questioning your experience here, because what you describe is sadly a common experience.

Anti-depressant medication does save life, and hopefully doctors are becoming more aware of the withdrawal / discontinuation effects.

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