H’s nightmare with Effexor withdrawal was laid out in last week’s post. Experts on antidepressant withdrawal were asked to comment – Will Hall, Altostrata, Peter C Groot, Bob Fiddaman, Josef Witt-Doerring have generously given time to do so. James Moore, Stevie Lewis and Ed White, administrator for a Facebook venlafaxine withdrawal group, who have substantial international profiles on withdrawal have also added comments to last week’s post.
Most of those commenting have had lives touched by withdrawal. I’ve designated them as experts but they would likely see themselves as ordinary people who have had to grapple with two awful problems – the effects of a drug and a betrayal by the medical profession and the pharmaceutical industry – and they would likely say to any readers going through similar problems that your motivation is more likely to lead to answers than waiting for expertise to ride to the rescue.
The issues in these posts apply to all SSRI and SNRI antidepressants, but also antipsychotics, gabapentinoids and other drugs. The withdrawal button beside the RxISK blog brings up 50+ posts on withdrawal issues with some on Sertraline and Prozac having hundreds of comments. RxISK also has a Complex Withdrawal panel with more information.
Will has long been regarded as one of the leaders in the Recovery Movement and researchers on withdrawal.
A few quick thoughts – skin rash is associated with venlafaxine and is considered very serious; she’s also on a high dose, I think this might need urgent addressing even if the risk and struggle of withdrawal is high given past experience.
She mentions a number of other drugs but it’s unclear whether still on them or not.
Doctors are consistently dismissing the role the drugs might be playing.
Sounds like she is long term benzo user which can have big implications.
Because a drug reaction isn’t reported in the clinical literature doesn’t mean it couldn’t be drug related.
Her self report is very limited and I’d want to know more about the rest of her life. Tolerance of withdrawal, like tolerance of pain, varies widely between people.
People frequently have physical ailments that are best addressed psychosocially – doesn’t mean they aren’t “real” only that we are humans and our entire lives come to play in our physical health.
Because of skin rash being associated with venlafaxine I’d consider it likely this is effexor related even if unusual.
I think the withdrawal process has to be understood and approached specific to the person’s life in general and ways for them to gain greater control and connection; many people have used 12 step and addiction groups for example to endure withdrawal. We know from addictionology and placebo studies that the body is extremely responsive to larger life context and so addressing that could be key, for example, is she alone with this.
Skin problems, akathisia in general absolutely, not sure specific venlafaxine and these specific symptoms, but I consider it plausible
I present pros and cons and advise them outcome is unpredictable. She’s on a very high dose right now that would be a concern. She’s gotten bad direction from professionals so I’d steer her towards finding her own leadership in all this.
Yes of course, I don’t know a biological standard for this but it’s consistent with the idea that there are people who can and can’t make changes in life
I think the role of the benzos and the sleep suggest to me that there is far reaching toxic impact in her body. nobody is really modeling this bc so complicated and existing models too rudimentary
With the rash I’d encourage her to consider significant dosage reduction, soon, despite discomfort. The rash is very troubling and would indicate abrupt withdrawal. Then I’d find out more about her life and emotional state and work on gaining more power to ease relaxation and “letting go” during a time of difficulty. I’d work with how to proceed best you can given a life out of control. I’d try to focus on areas of her life where she can get satisfaction and empowerment outside of the drug process. This would then allow the drug process to become more clear, her decision making to get clearer, and to be more tolerable. I’m especially concerned if she is alone and who is on her side, where does she go with her emotional inner world – people often just export all this onto a drug struggle.
Here is a paper I wrote that presents some of my overall learning and how it applies to how we think about drug research.
Altostrata set up Surviving Antidepressants – the best known website for people grappling with antidepressant dependence. She has probably linked with more people about withdrawal than anyone else.
It’s not common, but we have a cohort of people who got skin symptoms and sensitivities as this woman describes, while tapering or after going off antidepressants. Itching is not uncommon. She may always have had a lurking allergic reaction to Effexor that tipped over when she was hypersensitized by withdrawal.
She should not have continued tapering through “mild” withdrawal symptoms. Continued tapering makes mild withdrawal symptoms worse.
If she had asked me, I might have suggested a reinstatement of 5 beads of Effexor. That is correct, 5 beads. This is to evade the hyper-reactivity that seems to be almost universal in withdrawal syndrome and which she’s already evidenced. We often find a very low dose reinstatement is enough to reduce withdrawal symptoms to a tolerable level; after that, improvement is gradual over months — not days or weeks. To repeat: Very low-dose reinstatement is sufficient. (With SSRIs, particularly paroxetine, I would take the occasion to substitute perhaps 1mg fluoxetine instead.)
Currently, she clearly is suffering from an unnecessary but typical prescription cascade from her psychiatrist. Her current symptoms (Effexor and Lyrica?) may be an allergic reaction to any one or a combination of her drugs, or it could be a universal hypersensitivity reaction to the absurdly high doses of all of them. To find out which drugs are causing the problem, I would ask her to submit a daily diary over several days including when she takes each drug, the dosage, and her symptoms after each dose.
If it’s a single drug causing the reaction, symptoms will be more severe shortly after taking the dose or at peak plasma. To find a drug-drug reaction, I would map the P450 cyp requirements of each drug she’s taking.
She didn’t say how much Lyrica she’s taking, but I’ll bet it’s a lot. As she observes, it causes constipation. If she weren’t taking an unholy amount of Effexor, it’s likely a lower amount of Lyrica would help her sleep. As this woman observed, Effexor always interfered with her sleep.
My guess is that gradually reducing Effexor will help quite a bit. She may have to cope with “psychological” symptoms. I imagine she feels terrible physically and will be further traumatized when she realizes the drugs are making her sick. Feeling “depressed”, angry, helpless, and betrayed in these situations is a normal reaction.
So, overall, she’s overdrugged by a typical psychiatrist who thinks more is better and all the patient’s complaints are due to “depression”. As ever, I am disgusted and appalled at the utter cluelessness of a profession that throws psychotropics into people with wild abandon.
Would like to point out that very low dose reinstatement for post-discontinuation withdrawal symptoms conforms to theory underlying hyperbolic taper. As demonstrated in the SERT occupancy literature, you don’t need a lot of drug for partial receptor occupancy.
Shapiro, Bryan B. Subtherapeutic Doses of SSRI Antidepressants Demonstrate Considerable Serotonin Transporter Occupancy: Implications for Tapering SSRIs.
Psychopharmacology 235, 9 (2018): 2779–81. https://doi.org/10.1007/s00213-018-4995-4.
Bob Fiddaman is a wee known SSRI activist. Over the years, The Fiddaman Blog has discombobulated the UK regulator and many others and his account of withdrawal from Seroxat/Paxil in The Evidence However is Clear shaped perceptions of the problem – See Here.
I suspect we may all have different opinions but I write these down as someone who has gone through a 19 month taper of Seroxat (Paxil) and three month period of cold-turkey.
Absolutely. ‘Skin-itching’ is otherwise known as ‘crawling skin sensation’, which is a classic symptom of akathisia.
It’s sometimes difficult to explain. I’ve read many first hand accounts where people describe it as small worms crawling under their skin.
Even the National Alliance on Mental Health (NAMI), who are a pharma funded organisation, admit this. They write:
“The symptoms you are experiencing could be due to your medication. These types of symptoms are consistent with a side effect referred to as akathisia. Those with akathisia experience an inability to sit still and a constant urge to move. Due to a feeling of inner restlessness, a patient may experience fidgeting, pacing, rocking while standing or sitting, crossing and uncrossing legs while sitting, and constant movement of the feet. Patients have also described these feelings as “wanting to jump out of my skin” and as a “crawling skin sensation.” ~ https://www.nami.org/FAQ/Mental-Health-Medication-FAQ/I-have-recently-started-a-new-drug-I-have-been-ha
This is a good question and, for me at least, very difficult to answer as I am not a healthcare professional. Do we tell a heroin addict going through cold-turkey to take a shot of heroin if their withdrawal gets intolerable? The advice I normally give is to taper at your own pace and not at the pace of what a prescribing physician tells you to. I use the mantra, ‘Your body, your rules’.
Decrease, yes. In my experience of increasing the dose after an initial drop, the withdrawal effects seem to disappear. Decreasing is a whole different ball game because the only crutch one has is to go back to the original dose. When a person increases, it, in essence, gives the brain what it wants because the prior dose was ‘wearing off’, or rather ‘losing its strength’. There’s a train of thought on kids who smoke weed – On first trying weed, one may get a high after four or five ‘tokes’. As they become more experienced in smoking weed, those four or five tokes barely make a dent – so they take more draws until they reach their ‘high’. – Eventually they can smoke a whole joint, then two, three, four etc. In other words, a drug doesn’t have the desired effect if a person stays on the same dose, although I’m still baffled at what a ‘desired effect’ is when it comes to drugs like Effexor.
As I said, ‘Your body, your rules’. Nothing is set in stone regarding drug withdrawal. The 10% rule is merely a guidance. I, myself, came down ultra slowly because 10% would have been too drastic for me to tolerate. A smoker who smokes 40 cigarettes a day and wants to quit, may jump to just 20 a day – this would be too much of a drastic drop. He may then try 30, or 35 a day and still find he struggles. Cutting down to 39 a day for 7 days, then 38 a day for 7 days may be the only way he can beat his reaction to nicotine craving. This is basically the rule I used when tapering from Seroxat (Paxil)
6. What would you do for this woman now?
The electric zaps she is experiencing are what I have also experienced. I found a way to combat them – worked for me but may not work for her.
First, in my experience, it’s best to taper during the colder months of the year – for some reason my withdrawal was worse in the summer months – I can’t quite put my finger on this, I just know it was easier during the winter.
Second, drink lots of water – I drank up to 8 pints of water a day – this may be a placebo effect – I told myself I was flushing out poison.
Thirdly, if at all possible, go for walks, really push yourself – wear loose clothing and focus on what’s in front of you. Turning your head during withdrawal can be problematic as it can cause visual problems, dizziness and a nauseous feeling.
Finally, when the zaps start run a bath or sink of cold water, the colder the better. Place a large towel in the bath, wring it out then wrap it around your head like a turban. This, for me at least, gave me immediate relief. Also, running cold water on your wrists (the pulse part). There is something about the cold that helps. Has any study ever shown the brain to be hotter during any kind of drug withdrawal? This may be why it’s easier, for some, to taper during the winter months.
Josef is a medical doctor who in 2018 had a feature on the front-page of Psychiatric Times with an inside spread on Antidepressant Withdrawal and the need to listen to patients and patient groups – astonishing views to see expressed in the heart of US psychiatry.
I believe this lady has a tardive (late onset) and chronic sensory disorder likely caused by Effexor. The descriptions of the sensory disturbance sound partially similar to akathisia and restless leg syndrome (minus the confinement to the legs of course). The sensory pain in those conditions appear to match what this woman is describing: a hard to explain, deep scaly, crawling, agonising sensation. It has become more recognized recently that antidepressants have the potential to cause these types of disturbances – tardive sensory problems.
The onset of the sensory difficulties also fits a pattern common with tardive syndromes caused by long term use of certain monoamine modulating drugs (antipsychotics and antidepressants) : onset during withdrawal and persistent for many months after discontinuation and thankfully for this lady partial remittance on reinstitution of treatment – there are reports of these syndromes persisting despite reinstitution of the causative drug.
2. Are her “skin” difficulties anything you have come across before?
I haven’t heard about the red-pin spots before as being a common symptom directly stemming from these tardive syndromes, but I have heard of emergent drug sensitivity (such as with antibiotics). If this isn’t simply a symptom of these tardive syndrome I’m yet to encounter, it may be worth looking for other exposures in her environment which, did not precipitant skin reactions in the past but may now be doing so. Perhaps, other drugs, laundry detergents etc.
3. When people have enduring difficulties on withdrawal – do you advise them to go back on treatment and taper even more slowly?
Hard to say. Depending on the experience during the withdrawal. If for example there was absolutely no improvement in 6 months, that appears to me to be a reasonable sign that the condition may be permanent. E.g the body does not appear to be capable of correcting whatever biological aberration that has been induced. If there was a trend towards improvement, but the withdrawal failed due to the enduring difficulty of the symptoms, despite slight improvements, then I would be more hopeful in re-attempting withdrawal again in the future at a much slower pace. Additionally, in conditions such as Tardive dyskinesia which can often be permanent, old age can be a poor prognostic sign for recovery, I would be more encouraging in younger patients than older ones in reattempting withdrawal with the hope of cure. Also, the level of support someone has would be important in gauging how well they would tolerate another withdrawal.
4. Do you see people who can’t increase or decrease?
I’ve read many cases and heard from many individuals first-hand about being unable to decrease without severe symptoms. However I have not read cases like this where even dropping half a pellet from a very high dose — 375 mg, causes symptoms to emerge, typically these small drops only cause problems at the lower end of tapering.
5. How does a case like this fit into current models – like reducing receptor occupancy in 10% steps?
A good question. The idea behind reducing dosages in increasingly small amounts in order to drop receptor occupancy in a controlled linear fashion is that it will give the brain a greater chance to modulate receptor expression/sensitivity as previously modulated synaptic neurotransmitter levels return to normal. This is intuitively appealing and does appear to be the experience of many people who taper of psychiatric drugs – smaller drops confer better chance of success and reduced severity of withdrawal symptoms.
The problem here that I can see is that there does exist tardive syndromes which simply don’t improve, regardless of the time that someone is off the drug: Tardive Dyskinesia being the paradigm. Although it is very bleak and disheartening, I think there might need to be a place where some, after attempting to discontinue for long periods of time, might have to come to the conclusion that the problems will not go away. In these cases, hopefully reinstitution of the drug can improve these symptoms.
6. What would you do for this woman now?
There appears to be two options: One which manages symptoms and one which tries to cure the condition.
1) Symptomatic Management:
Persist with the Effexor which is at least masking the sensory disturbance and work on finding a combination of therapies: pharmacologic and others which allow this lady to live as comfortable as is possible.
Proceed on the assumption that a long taper of miniscule decreases might allow this lady to come off the medication. Liquid formulations might be useful for titration, switching to fluoxetine might be useful as it could have less inter-dose fluctuations given the long half-life. Although given this patients demonstrated sensitivity to even minuscule changes in Effexor dose, this sounds frightening to attempt.
There would likely need to be pharmacologic and other therapeutic treatments to be used regularly and as needed if the withdrawal symptoms are severe during the taper.
Both are hard choices, with 1 there is always a chance the symptoms might break through in the future necessitating higher and potentially more dangerous doses of Effexor to suppress them, and with 2 there is a chance it may not work, or simply be too be excruciating.
Both plans would need a knowledgeable doctor who can be flexible as treatment proceeds. The worst-case scenario would be getting treated by someone who simply throws meds at her off an algorithm or writes these symptoms off as hysteric manifestations of her depression.
The picture above comes from Heather’s Life Moments – created by Heather to reflect her hell coming off Paxil. Like H in this post, Heather appears to have been on a road to a prescription cascade.
To be Continued with 2 more posts…