Editorial Note: This request came to RxISK through Contact Us, last week. It went out to several of the panel who contribute to our responses, some of whom have qualified in medicine and some who have qualified by going through the medical system. There was no consensus among us about how to respond. Beneath the dilemma there are some notes toward a response.
I’m 48 years old and have suffered from mental health problems for most of my life as a result I believe of growing up in a dysfunctional family – alcohol, violence and emotional abuse were par for the course.
I started taking antidepressants in my 20’s beginning with Prozac. Then various others over the years as each time I reached a plateau and symptoms of anxiety/depression would creep in I would change to another brand.
The last one I was on for approximately 8 years was citalopram. Even while on this particular med I’d have bouts of anxiety and depression and spend countless hours in bed. Not to mention side effects of unnatural weight gain and diminished sex drive.
My mental health issues have been such a sad curse on my life interfering in relationships and employment. The latter reducing my financial status thus leaving me to rely on the health system where I live. Going private was way beyond my league on a weekly basis.
The public docs weren’t very good and there was endless counselling from novices.
Last year however I discovered a renowned psychiatrist who was offering a part time service. I wrote to him, he saw me and insisted that I should come off citalopram as he protested the harmful effects of these drugs and how they never should have been brought in in the first place.
Weighing up the pros and cons and from my own experience I agreed and was willing to start the process as I felt he was the expert and I had his consent.
As he was only operating a part time service and was in demand, he wanted to pass me onto a friend of his for counselling whom he highly recommended and could see me on a weekly basis. I began the weaning off process. I finished citalopram in early June having gone through horrendous physical symptoms.
Now depression and anxiety have kicked in along with night terrors, palpitations and suicidal thoughts. I can barely get out of the bed to use the bathroom and am suffering like a wounded animal. The tears are incessant and I’m reduced to a pitiful existence.
I don’t know what to do and I have very limited support given there’s 178 hours in a week where I’m struggling less one hour where I see my counselor.
My psychiatrist is no use to me and doesn’t want to know. He digs his heels in on his stance that nobody should be on the meds, yet he is not lying like a wounded animal.
There is no one I can talk to or a helpline where I can speak to people who have or are currently on this road post antidepressants. All very fine for the ‘come off’ them brigade but who’s around to help me in this current crisis.
Please can you advise as to what to do? I mean my system should be cleaned out by now and my brain making its own natural serotonin, would that be correct? So is this my chemical makeup and am I just doomed to a life of misery? Should I go back on the pills after giving it my best shot at coming off even though they don’t always do what they say on the tin and not to mention the heinous side effects? Can you help?
So in a situation like this there are two issues – what is going on and how best to help someone survive if we don’t know what’s going on or if the message is grim.
In terms of what’s going on with antidepressant withdrawal, we just don’t know. After taking an SSRI for this length of time, and given the indications of dependence from K’s post, no one is ever going to start producing serotonin normally ever again. These drugs can and likely have destroyed some nerve cells, probably mainly in the periphery, perhaps centrally also. There is no known way to fix this situation.
It’s no consolation to K to be told he probably should never have been put on them in the first place. The drugs have a place but it’s not in patching up difficult social circumstances. Counselors, and psychotherapists are right in this, although they often ask someone like me to prescribe an antidepressant when the therapy doesn’t seem to be doing the trick quickly enough.
It seems pretty certain from what he says, K is not suffering from not confronting issues not confronted twenty years ago. Taking antidepressants for twenty years can also leave a person ill-equipped to handle emotions when they return with all their intensity after an antidepressant is stopped, but it seems unlikely that this is what K’s problem is.
This is probably a problem his doctor knows nothing much about and it gets close to irresponsible to put pressure on someone to come off treatment because you don’t agree with the use of drugs when, because you don’t agree with their use, you know nothing about the damage they can do and can do little to help people handle it.
Interacting with medical systems can be deeply traumatic. Many of the reports to RxISK or on this blog are about the casual or even hostile dismissals from doctors or “health” “care” systems and the recognition the person is on their own. But in K’s case we have an almost well-meaning brush off from a doctor who hasn’t Manned Up to the challenge – this is a tricky point to make when as a doctor I have to concede we just don’t know what we are faced with.
But the medical art, if there is one, is about being able to stay with people in the face of uncertainty and not decide too quickly this is a disorder within them or a social problem. A good doctor needs to be able to live without a diagnosis or a treatment. Needs to be able to recognize that they don’t know what’s going on and that its people like K in predicaments like this who are going to find the answers – if there are answers. A lot of what happens on RxISK is powered by people who have had to live through these dilemmas.
Giving someone the impression it’s their fault if they aren’t coping, their moral failing, is not good for morale.
But it’s also difficult to keep morale going in the face of a permanent problem. Very often we get feedback that RxISK is not helping when it says things may be permanent. Some people just don’t want to hear this message, or at least not right at that time. With a query like this it’s difficult to know where K falls on this spectrum.
Several things can be said. Even if the problem is permanent, or semi-permanent, getting up and doing something will likely be better than doing nothing or waiting for an answer to come from somewhere. If there is a degree of nerve destruction, just as with a broken leg, getting fit and building up compensatory muscles or functions can be a way forward.
While it is unquestionably very difficult for many people in K’s position to do anything, because of the disability drug withdrawal can cause – not because they lack moral fibre – pushing himself to do more bit by bit physically and mentally has to be the way forward. This is not helped if you figure counseling is important or that the only time in the week when things are getting done is during the one hour with the counselor.
But even if you determinedly set about doing whatever you can for yourself and people have worked up to writing, or wilderness trekking, or extreme things, the consensus among the panel here is it can take nine to twelve months to get to a reasonable place.
The question of going back on treatment is a fraught one. It seems counter-intuitive to go back on a treatment that has caused nerve damage to begin with. And at this point for K, three months off treatment makes it unlikely that going back on citalopram would help.
Is it worth going back on treatment to see if he can pull things back from unbearable to discouraging? I/we don’t know. That is we can’t offer K an estimate of how likely it is he will achieve some relief by going back on. Many people in this position seem to get little or no relief by going back on but we don’t know how the percentages break out on this one.
It remains uncertain whether tapering medication is of much help. A number of trials suggest those who come straight off antidepressants do as well as those who taper, but these trials have likely not included many people with problematic dependence. But tapering does do one thing that is useful. It gives people a series of places to stop at and assess whether things are going the right way or not, and if not, they then have an opportunity to stop tapering or to increase the dose again at a point where doing so might restore some equilibrium.
These are all difficult judgement calls to make. There are no right answers in general. Everyone faced with working out what to do will be operating from a different position.
It would be great if we could channel the struggles people go through and the insights they arrive at from enduring situations like K’s into a broader effort to put the system right – but even a crusade like this is not the right thing for all.
That said, a form of protest invented in Ireland centuries ago, a hunger-strike outside the residence of the person you have been injured by, is a better option than suicide. For all we know extreme starvation might produce benefits.
Editorial: There is a parallel series of Go Figure posts about finding an answer on the systems level to treatment induced injuries.
Added – there are always the options on the Complex Withdrawal section centred on TRP receptors that no-one has commented on and it seems no-one explored. It’s only those suffering from withdrawal difficulties who can establish if any of these options work.