The expert inputs Managing Efexor and SSRI Withdrawal and Protracted Antidepressant Withdrawal to and comments on H’s case Side Effexor Withdrawal have been wonderful to get and hopefully will be a resource for others.
H’s original problem and the idea of a commentary came about because 3 of us considered her case in response to a request she sent to RxISK for a consultation and we all figured this was not a problem that had any easy answers. Getting and giving H a range of views seemed the best way forward. It risked leaving her more hopeless if there were no answers, but a recognition of her difficulties and that they are widely shared might help nevertheless.
I’ve seen almost no more correspondence from H than readers of this blog have seen. My sense is that she is a competent woman, perhaps very competent. Her difficulties getting off Efexor, or anything that happened before leading her to be on it, don’t change my view.
I have known a lot of extraordinarily competent people have problems getting off these drugs – competent here doesn’t mean lawyers, doctors or professionals, although these can be competent too. It means I have met people who impress me greatly who have had tremendous difficulties getting off and have taught me most of what I know about getting off – or not getting off – from using lower potency drugs, to splitting doses, using liquids and being active.
H is in her 40s. The difficulties in getting off appear worst of all for women in their 40s and 50s, who may have been put on paroxetine (Paxil/Seroxat) or venlafaxine – desvenlafaxine (Efexor/Effexor/ Pristiq) for perimenopausal issues – as a treatment for hot flashes for which these drugs have been promoted. In this case, totally normal women, with no hints of nervous problems ever, can end up suicidal, beyond agitated and in complete disbelief – facing doctors who pass their problems off as depression or anxiety and in need of a tweak to the meds.
Another aspect of what shapes my view is that women in the same age group put on SSRIs for this and related reasons, end up with Persistent Genital Arousal Disorder (PGAD) on stopping. This is clearly related to withdrawal in some way – it can start on treatment but usually declares itself on stopping. The discomfort can be so intense it leads women to have ECT, have the nerves to their genital area cut, to injections of botulinum or cholecystokinin or other remedies into their vulva (injections means up to 100 at a time), and clitoridectomy.
There is or potentially is an element of PGAD and PSSD – a tardive element as in tardive dyskinesia – in every withdrawal syndrome and at present we have no answers for this element of withdrawal.
There are almost certainly other tardive components that can happen on treatment – affecting the bladder, gut, respiratory system, peripheral nerves and other parts of the body.
There are things we seem to be able to do if there is no “tardive” element to a withdrawal, but at the moment very little we can do for any tardive elements that may be present.
Central or Peripheral?
My exposure to withdrawal syndromes – including PSSD and PGAD – has left me leaning toward viewing these states as peripheral in origin rather than central. People tend to worry that these drugs have fucked their brains – and point to very real memory, emotional and other cognitive problems as evidence of this.
These ideas are totally understandable given the heavy marketing of these drugs aimed at creating the impression they go straight to one little spot in the brain and correct a problem there – they don’t. The serotonin in all of us is primarily in our body not our brain.
It is also not clear to me that withdrawal or at least the tardive component has anything much to do with serotonin. Fifty years of research has failed to link tardive dyskinesia to the dopamine system on which antipsychotics act, and my hunch is the same will apply to drugs active on the serotonin system.
This seems to have implications for proposals to reduce in decrements of 10% and for hyperbolic rather than linear reductions. These models hinge on an understanding that we are dealing with rates of separation from the serotonin reuptake site or related receptors, which might hold when there is no tardive element but seem less likely to hold when there is.
So if not serotonin, what?
RxISK has floated ideas about Transient Receptor Potential (TRP) channels/receptors here before primarily in connection with PSSD.
Someone linked to RxISK who cannot get off the SSRI he is on has been doing a lot of digging in this area and we hope to post something more soon about these bits of us that were almost completely unknown when the SSRIs were first launched.
Labels and Guidelines
One of the issues that has featured in comments is the issue of doctors prescribing off label or not keeping to guidelines or not recognising obvious withdrawal. The anger at this runs deep and seems to fit with complaints against pharma companies who push drugs for off-label use.
The actions of doctors like H’s doctors can be viewed with incomprehension.
Part of the problem here is some doctors are, or feel they are, stuck. There is no drug licensed for the SSRI-induced toxicity that killed Stephen O’Neill – see The Perfect Killing Machine and The Death of Stephen O’Neill. There are no guidelines for managing H’s or Stephen’s situations. I don’t want anyone to comment saying there are NICE guidelines or there is a recognition of the problem by the Royal College of Psychiatrists – there isn’t. There is a certain amount of fig-leafing going on but nothing worth anything to anyone having to live with these problems.
Many doctors who want to treat H or Stephen O’Neill will figure they have little option but to diagnose a case of depression or anxiety and treat accordingly – the complaints H and Stephen voice include depressed mood, anxiety and perhaps even suicidality after all. Taking matters into their own hands, these doctors feel, could be risky – there are so many people out there from regulators to politicians to guideline makers to bioethicists to most people on Mad in America who will figure going off-label is just about the greatest sin there is.
No guidelines, no regulator, no academic, or senior clinician, no pharmaceutical company is ever going to say – here’s what you can do for withdrawal – other than perhaps mention tapering which doesn’t involve going off label. Pharmaceutical companies could get sued or fined heavily for recommending anything that shows any originality.
SSRI dependence, withdrawal, addiction, raises profound political problems. The system knows people with these problems are there – in their hundreds of thousands, perhaps millions – and it would prefer you die rather than recognise the issue and grapple with it.
Those affected find it incomprehensible that those in positions to help just don’t seem to listen – they really wish you would go away. The surprising thing is “we” never get the message, or see their fingers stuck in their ears. It needs something more drastic than nice letters or talking to them.
Pain and will power
The tardive point above seems to argue against the will-power, mind over matter, point that has come up in several comments.
It does and it doesn’t. People who work with pain say that it can be very important for the person affected to recognise that their opioid or other analgesic is causing the problem for which they want more treatment. The same case can be made for some anxiety and depression states.
It’s not just a matter of recognising a particular drug is the source of much of the problem but that the act of turning to any drug can be a problem. There is something about embracing the pain, or anxiety, or depression without figuring there is a magical solution somewhere that can be a help – this is not the same as mind over matter or of will-power. I say this as someone who isn’t sure I would be able to deal with significant pain or withdrawal without a stack load of meds.
It is much more intuitive, it seems, to figure there must be something out there that can put this right. Resigning ourselves to seemingly doing nothing doesn’t seem right – just like staying still in quicksand doesn’t seem right. But trying to get out of quicksand by doing the obvious thing is what will kill us.
That said, the problems linked to withdrawal may be beyond willpower. As Annie notes, the desperation of akathisia or PGAD doesn’t leave much room for the exercise of willpower.
Do you think this lady has Effexor withdrawal?
Are her “skin” difficulties anything you have come across before?
Skin issues linked to SSRIs yes but not particularly to withdrawal
When people have enduring difficulties on withdrawal – do you advise them to go back on treatment and taper even more slowly?
I don’t know what to do. The worry is going back on treatment will cause further problems.
Do you see people who can’t increase or decrease?
Yes. And a lot of doctors see things getting worse as the dose goes up and can’t make the link to an increased dose, leading to the prescribing cascade we see in H’s case.
How does a case like this fit into current models – like reducing receptor occupancy in 10% steps?
I’m not sure it does.
What would you do for this woman now?
When the problems get to this point there are no guidebooks. You want someone you can work with. This will almost certainly involve someone willing to prescribe off label and willing to give what you think might work rather than what s/he thinks, and maybe even giving something s/he is somewhat against.
There are people who have been helped by drugs I would never give in a million years, and options I can make a good case for that don’t work as well as I think they should. Some options are available in some countries and not others.
PGAD – PSSD
There should be a common interest between people with protracted withdrawal syndromes and those with PSSD and PGAD which represent very clear forms of tardive withdrawal. Find an answer for PGAD and PSSD and we will likely be able to make a big difference for people stuck in withdrawal also.
How did we get Here?
In the 1980s, companies like GSK ran healthy volunteer trials in which it was clear volunteers exposed to these drugs could have withdrawal symptoms after only 2 weeks on treatment. The symptoms included anxiety, depression, sexual dysfunction, suicidality, dizziness, gut and other problems.
These drugs were sold as non-dependence producing in contrast to the benzodiazepines. There were however more reports of dependence/ withdrawal linked to paroxetine in 3 years of paroxetine being on the UK market than there were from all benzodiazepines combined in the previous 20 years. Yet regulators, politicians, guideline makers and others exhorted us to continue taking out pills. We did and now 10% of our populations are on them semi-permanently – they can’t get off. Worse again, many of these same people claim these drugs are saving their lives because they feel so much better when they start taking them again after a brief stop.
One of the few things that may lead to increased recognition of SSRI withdrawal is a new drug – there is growing interest it seems to me in the sexual dysfunction and suidicality linked to SSRIs that smells like premarketing for some new compound.
The company will have some experts get up on platforms to talk about the well-known sexual and suicidal problems SSRIs cause which might seem like recognition for people like H. It won’t be recognition – it will be one last use of her distress to boost the sales of some new compound that will cause its own problems.
H and others concerned about people who are dependent on these drugs will be left barking while the pharma caravan moves on.
The worrying thing is there isn’t more interest at the moment in dependence on SSRIs which may mean that companies know these new drugs will also cause dependence.
Nov 10th 2021
On November 10th 2021 – 18 months after first making contact, H emailed.
Hello everyone, I am H. I thought I should post an update in case it helped someone.
I finally had a very frank conversation with my psychiatrist about how I was feeling. She concluded that despite the high dose of effexor (375) my depression was still resistant to the drug for treatment.
She put me on a tapering off effexor whilst introducing a new antidepressant, Dosulepin. She said it has been around for a long time and was one of the first antidepressants to become available for depressed patients. She told me that ‘on paper’ it isn’t advised for patients to take effexor and dosulepin concurrently due to adverse side effects. However, fortunately I didn’t have an interaction problem (my psychiatrist joked my liver must be doing a good job) . I take dosulepin at night and effexor in the morning.
The effexor was tapered in doses of 75 each week whilst taking dosulepin at night. To my delight, I had no adverse side effects from tapering effexor like I did the first time. I am now down to 37.5 of effexor. Soon I will stop effexor altogether.
David and his colleagues were right, people like me (who have difficulties with effexor) sometimes can taper by introducing a different antidepressant.
The new antidepressant is certainly doing more for me than effexor ever did. So far so good.
I have been reading some of the other posts about what a nightmare (and frankly a poison) effexor is. I wish I had never met it! Effexor is no joke and with other more effective treatments available, in my opinion, Effexor should not be the first medication prescribed. It seems to be the ‘go to’ medication in the medical community.
I am so excited to finally be (almost) free of Effexor!
I have written to the producers of Effexor with my story. I will be following up. It would be great if they included in the very long list of side effects the traumatic problems some patients have when trying to get off Effexor!