Managing Effexor and SSRI Withdrawal
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 Hall
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.
- Do you think this lady has Effexor withdrawal?
Yes
- Are her skin difficulties anything you have come across before?
Skin problems, akathisia in general absolutely, not sure specific venlafaxine and these specific symptoms, but I consider it plausible
- When people have enduring difficulties on withdrawal – do you advise them to go back on treatment and taper even more slowly?
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.
- Do you see people who cant increase or decrease?
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
- How does a case like this fit into current models – like reducing receptor occupancy in 10% steps?
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
- What would you do for this woman now?
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
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
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.
- Do you think this lady has Effexor withdrawal?
Yes
- Are her “skin” difficulties anything you have come across before?
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
- When people have enduring difficulties on withdrawal – do you advise them to go back on treatment and taper even more slowly?
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’.
- Do you see people who can’t increase or decrease?
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.
- How does a case like this fit into current models – like reducing receptor occupancy in 10% steps?
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 Witt-Doerring
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.
- Do you think this lady has Effexor withdrawal?
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.
2) Curative:
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…
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Just a quick comment in support of Josefs post. Just yesterday we had a lady reporting skin complaints from tapering venlafaxine. I have seen this before as well. Many people complain of itchiness, some all over the body and some localised (often hands, feet, arms, legs etc).
https://www.drugs.com/sfx/venlafaxine-side-effects.html lists several skin ‘conditions’ as side effects including “red or purple spots on the skin”, incidence unknown.
It seems reasonable that some reported side effects could also be withdrawal symptoms.
This is so great reading the views of those so far in this series.
Including Heather and her Paxil cold turkey.
The most extraordinary things that come to mind is how any SSRI can have such varying effects on each person. Look at Stewart Dolin, look at David Carmichael, look at Donald Schell, how extreme their behaviour became. In each of their cases there was overwhelming evidence that the drug played a huge part.
Numerous cases of violence and aggression towards self or others have been documented.
The case of H is a good one as it brings up little known effects that have manifested from Effexor.
The extreme end of the SSRI effects, as with Stephen O’Neill, and Sertraline, can enter a whole different world, where the medical profession is concerned.
Yet, H, also seems to have entered an extreme end.
You can easily die from cold turkey; upping a dose, lowering a dose, changing a dose, of any SSRI, if you, are one, of those particularly predisposed to the assault on your own individuality.
A fascinating conversation from Experts about H.
One which can develop with further Experts.
I just wonder, how H, who has serious problems, with dangerous doctors, would cope, if her situation entered a new phase, whilst doctors sat idly by …
https://www.bbc.co.uk/news/health-37682355
Has the media impacted on how H, deals with her current problems?
Wow, I love the combined wisdom here and am glad there will be more. It’s a great approach. (Was thinking the same when I saw James and Stevie’s comments).
The only knowledge of Effexor that our family have is that for a brief period, our son, (damaged by RoAccutane isotretinoin and at the time, having been on citalapram for several months) was put on it when he went into hospital at his own request because he was once more battling suicidal thoughts on RoAccutane – except he didn’t understand why he was getting them, no connection with the acne drug was allowed to be made, despite our families’ pleadings.
Anyway, he had no mental health diagnosis but I guess they thought let’s try Effexor (Venlafaxine) and stop the citalopram at once (no tailing off…). He felt even worse on the Effexor but after some time was seen at home by the MH Team Home Treatment Lead Psychiatrist who was a whizz at NLP and was not a listener in any sense of the word. He told our son (witnessed by us and one of the Team) to stop the Effexor stone dead too, with no trailing off. The head pain, zaps like Electric shocks behind the eyes, dizziness, nausea, and what we now now as AKATHISIA was terrible. My son also reported that the suicide feelings were intensified. The NHS psychiatrist, (also in his private work a head trainer in NLP working with Paul McKenna, and with quite a hypnotic speaking manner when talking to patients) told our son he was not depressed and didn’t need the drug so he should stop it immediately. The withdrawal effects were dire, and led to his being offered Olanzapine and Sertraline to ameliorate them, by an Out Patient Clinic psychiatrist, which led to his suicide some weeks later.
My point in raising the Effexor issue is that when we complained to the MH NHS Trust, after his shocking death, they were nervous to challenge the NLP psychiatrist and we were not allowed to speak to him. Interestingly we were told that all the witnesses who’d seen the exchanges between the psychiatrist and our son were either away, off sick, re-posted or couldn’t remember anything. We talked to a psychiatrist friend whose partner was a professor of psychiatry, before we submitted our complaint to the GMC. This Psychiatrist friend does have manic depression herself and is in Effexor. The clinician providing her care said he would NEVER take her or anyone else off Effexor cold turkey, as Olly had been told to do,. It has, in his opinion, the most dire and dangerous side effects if stopped suddenly, even after a short period of use. And, don’t forget, our son, prior to that, had been on citalopram for months but that had been stopped suddenly too.. So, this psychiatrist couple helped us prepare our complaint to the GMC, citing the stoppage of Effexor as having been extremely unwise and maybe leading to the later suicide because the AKATHISIA it triggered was so unbearable. It seemed an ‘open and shut case’ for at least a reprimand. But no,when considering our complaint, the GMC didn’t even ask to see the psychiatrist who’d inflicted this withdrawal agony on our son, because he sent in a deposition saying it was our son’s, and the family’s choice to stop the drug! So, ‘nothing to do with him, guv’. Well, our son had only stopped it because HE told him to, and we, although witnesses, had made no comment at all. This guy I think did not like drugs, and maybe preferred a bullying style of covert NLP to using medication, and had taken others off suddenly too. But he obviously thought ‘mind over matter’ could eliminate any withdrawal symptoms from ANY drug you were on in a flash if you just psyched yourself up enough to believe it. We complained to the Trust CEO that he didn’t really seem to understand how these drugs worked, if he felt like that. But after two meetings, and no apology, NHS MH Trust didn’t really want further discussion.
However, I will never forget how strongly our two advising psychiatrist friends, one very eminent, who’d helped us prepare our GMC submission, were blown away by the GMC’s final decision. The NLP psychiatrist retired soon after, and now works privately, partly in prestigious locations in London we believe. And lectures on NLP. It was our son’s extremely bad luck to have been assessed for Home Treatment by this guy, and to have then seen him one more time, when he shamed him in front of us all about his confided suicidal thoughts and removed all further treatment at a stroke, shouting at him that he had brought his illness in himself. We always felt that the stopping of the Effexor in one fell swoop, as advised strongly by him in front of witnesses, was the major factor that set the dominoes of his last few weeks toppling. But there was no acceptance or apology from this guy. All the GMC suggested to him was that he could maybe tone down his language when shouting at patients!!
Heather I empathize with everything you have experienced, as I have experienced very similar frustrations as you, trying to get justice from the local mental health unit for the damages done to me, which are very protracted PSSD, and protracted withdrawal from benzodiazepines, which took many years to recover from.
No matter how reasonably I presented my argument that the drugs had caused my ongoing problems, I wasn’t listened to or believed. I mean I tried very hard for many, many years, to try and get them to listen and believe me, but no matter what I said or did, they wont accept what has happened to me, even at almost 13 years after all this began.
But what I found the most shocking of all, is that although I to some extent expected the mental health unit to be a bit defensive (although not to the extent I experienced, and I thought they would believe me once they could see the evidence I could provide etc), I was not prepared for the way the entire medical system and surrounding agencies would turn on me, to deny what I know had happened to me.
I mean I was betrayed by almost everyone. And when I say almost everyone, I mean almost EVERYONE.
This includes my Psychiatrist (and another Psychiatrist when I tried to get a second opinion, where he simply agreed with my original psychiatrist that Citalopram could not have caused my persisting sexual dysfunction), multiple GP’s, a Psychologist, my Rethink worker, multiple other senior staff who worked for AWP, the MHRA, the PHSO, the whole lot of them turned nasty on me, and colluded between themselves to make out that what had happened to me wasn’t real, and that I was the problem etc.
I even had a couple of friends that I lost who wouldn’t understand or believe what had happened to me, and there are even people within my own family who also don’t believe what has happened to me.
They all betrayed and stabbed me in the back when I was at one of the most vulnerable points in my life.
I mean some of the behavior I had to endure during the complaints process was very bad, including multiple lies and dishonesty by staff at AWP, particularly to make out Citalopram could not have caused my ongoing sexual problems, including an entry appearing in my medical records (which was absent when I requested my records) which was sent to the PHSO saying I had complained about my sexual problems just prior to being prescribed Citalopram, so therefore the Citalopram could not be the cause. This is completely untrue, and even my SEAP worker who helped me with my complaint thinks they have conveniently added this to my medical record, as he has seen similar things happen on other cases he has worked on.
The PHSO fully accepted AWP’s conclusion that my sexual problems were not caused by Citalopram, and that they were pre existing to me being prescribed Citalopram, when I know with every fiber in my body that I had no sexual problems until the day I took Citalopram.
I was also taunted by a woman at the local crisis team a day after making a suicide attempt, who knew about my complaint against my psychiatrist, and told me that if I really wanted to have killed myself I would have done, and advised my mum that if I became agitated again, to phone the police and have me arrested, even though I had done nothing to justify me being arrested. This woman was so callous and nasty towards me when I was feeling very emotionally vulnerable and fragile, that it nearly prompted me to make a second suicide attempt.
There are so many other examples over the last almost 13 years of dealing with all this, most of them which I have covered in previous comments, and which I haven’t got the energy to write out today.
I mean the experience of it all has been so bad, and so long lasting, that I genuinely feel I could write more than one book about it all, and still not be done. Maybe one day I will.
The feelings of betrayal and shock at how intelligent people could deny what was obviously happening in front of their eyes, I don’t think will ever leave me, no matter how much time passes.
What was an even further insult to injury, after having endured so many other insults to injury, was that the Psychiatrist who prescribed me the Citalopram that caused my PSSD, was promptly promoted once the complaints process was over, to a position where he makes even more money prescribing these tablets, while I was left unable to work because of an abrupt taper off benzodiazepines which was also done by him, which took me years to recover from, whilst I barely survived on benefits.
What was an even further insult to injury was that a while after his complete exoneration by the PHSO, who gave him a glowing report describing him as having done “nothing wrong”, I saw him out and about in town with his family of children. He has been allowed to have a large family of children while my genitals are numb, I am almost completely sexually dead, and have been for almost 13 years, and I may never be able to enjoy sex ever again for the rest of my life, or have the opportunity to have children, because of the PSSD which he caused.
The injustice of it all has been so sickening, that on some days I could almost commit a murder because of it.
Spruce, what you are describing is exactly what we, on behalf of Olly, have experienced for years. As, I feel sure, have many others. The injustice of it IS indeed sickening. There’s not a day goes by that I don’t remember the agony Olly was experiencing and because we, his parents, didn’t understand what was happening to him, I don’t think we were as helpful as we could have been, because, like you say, doctors were endlessly saying ‘oh, this is attention-seeking behaviour, leave him alone, he’s bringing this on himself.’ As his mum I’m not ashamed to say I loved him to bits and spent those 11 awful years in a state of tension trying everything I could find, to help him. I KNEW he was not putting it on, he’d been the most loving, honest, responsible person right from when he was tiny. If we hadn’t been told that ‘the medications couldn’t cause his pain’ I would have made much better headway, but we were bumped off that route of enquiry by every doctor, bar one, that we discussed it with. And to this day, it’s very rare that one of them has the guts to admit what, I feel sure, most of them know is the truth. RxISK didn’t start till 2012, just after Olly died, too late for him sadly to use as a resource. But not too late for his parents to study and learn from, in order to carry out Olly’s wishes and ‘help others.’
I don’t discuss these things with most doctors nowadays, their rebuttals make me so amazed and disappointed in them, it upsets me too much. I think they are actually running scared, they can’t break ranks and admit what’s happening, it’s all too big now, so they all have to brainwash themselves into following The Big Lie. I feel so much fury, like you Spruce, but if I let it, it can make me ill, and then they’ve not only killed my son but could kill me too. I’m focussed instead on spreading the word. We put illustrated posts up now weekly on the Facebook page of Olly’s Friendship Foundation, to tell as many as we can what happened to Olly, both in regard to RoAccutane isotretinoin and also SSRIs, anti-psychotics, akathisia and the way MH Medical people behaved. Many of those who’ve suffered similarly add their comments, and the more of us contribute, the louder our voice and the greater our reach.
Pharma would no doubt like us removed or ruined, but it’s all I can do for our son and brave others, like yourself. I cannot believe that people can treat others like you’ve described and like Olly also suffered, but then, remember what the Nazis did, it’s amazing what the herd will do if they think there’s strength in numbers and they are dealing with physically weakened people and they think they hold all the cards. I just hope justice is done in the end, but I can’t see how anything can ever make reparations for the evil that has been done and continues every day still.
I’d say, put the pain of these experiences from these bastards behind you, go for the bigger picture, keep your eye on the future and your success. One day they will pay. But write your book Spruce now, don’t delay. The written word CAN make a difference, look at CHILDREN OF THE CURE. The truth at last, to empower us, to show without question the lies and the obfuscation that’s gone on.
Thanks Heather.
I know I have to look towards the future, and not dwell on all the things I have lost, and on some days I can do this, but on other days I just feel so overwhelmed by the anger about all the years and opportunities I have lost because of PSSD, and the long benzodiazepine taper and withdrawal (which came after the abrupt taper from the psychiatrist).
But I know I can never get back my lost youth, and everything that was stolen, so I have to look towards creating a better future for myself, somehow, out of the ashes of this experience.
What I think would help me, and I am sure others who have been through a similar long lasting experience with these drugs, to get some level of peace about everything that has happened, is if something really good eventually comes out of all of our suffering.
If we can find a way to somehow get a test which can prove PSSD exists, which would at least stop people being disbelieved, and really allow for the condition to be fully accepted, then that would be a big step forwards.
If this also opens up the road for some form of justice and compensation for the misery this condition has caused to so many people, and if we learn more about the mechanism of action of PSSD (and perhaps the human body in general), through creating this diagnostic test, then that will be good too.
But what I (and others) think is really needed on a bigger scale, is there needs to be fundamental changes in the law, so that ALL data from the trials of these drugs has to be fully accessible by law.
Unless there are laws forcing the pharmaceutical industry to do the right thing, I don’t think the situation will ever change.
Until all of the cards are layed on the table, and there is real, full transparency, then I think the same mistakes, and similar harms, are going to happen on a large scale, when the next group of drugs comes out to replace the SSRI’s and other drug groups etc.
I also think there desperately needs to be a complete overhaul of the drug regulators including MHRA, EMA, and FDA, so that they are completely independent from the pharmaceutical industry (which they certainly aren’t at the moment), and can therefore do the job they are supposed to do in a truly impartial way.
There should be laws in place which will robustly keep them in check to their primary objective of serving and protecting the populace, with a strong deterrent of criminal prosecution if they fail to do this (remember we are talking about the potential for many thousands of people to lose their lives if the regulators fail to do their jobs properly).
If we can somehow find a way of implementing laws so that the drug regulators can have no financial link, influence from, or bias, in favour of the pharmaceutical industry, and that allow the drug regulators to take firm and effective action if the pharmaceutical industry doesn’t abide by these laws, then we will be able to create a health care system that is designed with the health of the populace as its top priority, rather than a healthcare system driven by profit, with the health of the populace as a secondary concern.
Until these two things are achieved, I think the same mistakes will be made again, and again, into the future, and millions more will suffer, with many, many more avoidable deaths as well.
But if we can somehow find a way to shift the balance of power and implement laws that stops the pharmaceutical industry concealing the truth, and influencing and controlling people within healthcare with their economic might, and if these laws allow them to be robustly prosecuted if they fail to abide by these laws, then we can all live in a world with a health care system which is honest, effective, and which has our best intentions as its core objective.
Achieving this end goal is likely to be difficult, maybe very difficult, but then similar large scale changes like this have happened in the past throughout history, so I don’t think it is impossible.
One possible way this could be achieved is if we somehow provide indisputable evidence that the way the pharmaceutical industry and regulatory bodies are operating, is harming and killing hundreds of thousands of people each year.
Although in many ways this evidence is already there, at the moment there seems to be only a small section of the medical establishment which has woken up to this reality, and the same seems to be with the general population, with only the minority realizing this as well.
If we can find a way of significantly increasing the level of knowledge about the serious large scale harms the pharmaceutical industry, aided and abetted by the inaction of the regulatory agencies, is causing, so that the majority of the medical establishment, and also the majority of the population realizes this, then we could become strong enough to cause enough pressure, to change the law, to make the legal changes needed.
If looking back maybe 30 years from now, when I am starting to move towards old age, if I can see that these changes have either happened, or there has been a lot of progress towards these changes happening, then I would regard this as a form of success, which would hopefully take the sting out of some of the suffering I and others have been through.
But I genuinely think the way to achieve this, will likely come about through changes in the law, which are enforceable.
Hello spruce, your story is very touching and I have much respect for you. I have had pssd for 3 years now and I am going day by day trying to cope with it and trying to accept the fact that I might have it for a while. What I do have a question about is have you tried having children, is it of the slightest possible, because that would be a blessing to me to just even have kids, a family of my own. I have been following rxisk for a while and couldn’t find a definitive answer to fertility when it comes to pssd. Thank you for sharing your story, and hope all is well
Hi Harry.
From what I have heard about PSSD and fertility, is that SSRI’s can reduce fertility while you are on them, and maybe for a while after coming off them as well, but that SSRI’s and PSSD don’t make you infertile. So they can reduce fertility (assumed a reversible reduction), but they don’t make you infertile.
I was concerned about this too, and last year I arranged for a fertility test through my GP. The results showed that I was fertile, but that I had a reduction in volume of sperm (I have noticed a reduction in ejaculate since developing PSSD), but that the quality of the sperm was within normal standards, and was quite good, and I have been told that I should be able to have children with this quality and volume of sperm etc.
If you are worried about it, I recommend having a fertility test organized through your GP, to put your mind at rest.
The problem I have is maintaining and keeping a long term relationship with a woman when I have almost zero sexual attraction or desire for her because of the PSSD, and also cannot feel romantic emotions and feelings because of the emotional anesthesia which I also have from the SSRI’s.
I have tried having sexual relationships with women over the last almost 13 years of having PSSD, and they almost always fizzle out after a month or two, as I cannot maintain faking sexual interest and/or romantic feelings for them.
It is because of this reason I worry I wont be able to have children, because for me it is very difficult to have a long term relationship with a woman whilst having PSSD.
ScienceDaily
Your source for the latest research
HTR7 Mediates Serotonergic Acute and Chronic Itch.
Serotonin receptor is involved in eczema and other itch conditions
Research points to new target for treatments
Date:
June 11, 2015
Source:
Buck Institute for Age Research
Summary:
Scratching the itch of eczema, researchers have identified the serotonin receptor HTR7 as a key mediator of eczema and other forms of chronic itch. Eczema affects some 10 percent of the population and can involve intense, frequent itching and a flaming red rash. There is no cure and treatments are often not effective. The research, in mice, points to targets for new treatments and helps explain why itch can be a side effect of antidepressants.
FULL STORY
Dermatologists have long known that available treatments for chronic itch, including eczema, are simply not up to scratch. But scientists have now discovered a new gene that promotes itch, suggesting a way forward for powerful new therapies. In a paper published June 11 in the early-online edition of Neuron, researchers at the Buck Institute for Research on Aging and the University of California, Berkeley have identified a serotonin receptor, HTR7, as a key mediator of eczema and other forms of itch. Eczema is a debilitating condition that affects up to 10 percent of the worldwide population. Its symptoms include intense itch sensations, dry flaky skin, and a flaming red rash. Eczema can erode quality of life as dramatically as chronic pain does, and is incurable, and treatments to manage eczema are often not effective. But now, the Buck/Berkeley team has identified a new gene that may accelerate development of chronic itch therapies.
The work involved a collaboration between UC Berkeley neuroscientist Diana Bautista, Ph.D., who runs a lab focused on the molecular basis of the sensations of itch, touch and pain, and Buck Associate Professor Rachel Brem, Ph.D., a geneticist who studies how and why traits differ between individuals. Bautista, Brem, and collaborators sought out genes whose expression was correlated with itch behavior across genetically distinct mouse strains. The serotonin receptor, HTR7, caught the scientists’ attention because the itchiest mice expressed the most HTR7 in the neurons that innervate the skin, and because abnormal serotonin signaling has long been linked to a variety of human chronic itch disorders, including eczema.
A battery of follow-up experiments then validated the role of HTR7 in chronic itch. In a mouse model of eczema, loss of the HTR7 gene in mice led to significantly less scratching and less severe skin lesions. ‘We are really excited about these results. The dramatic decrease in itching suggests that HTR7 may represent a new drug target for chronic itch,’ said Bautista, who is an associate professor in the Department of Molecular and Cell Biology and a member of the Helen Wills Neuroscience Institute at UC Berkeley.
Brem says that, in addition to eczema, altered serotonin signaling in the skin is found in other forms of itch, including psoriasis and allergic itch. Therefore, the new findings hold promise for treatment of many itch disorders. In fact, in humans, itching and scratching can be side effects of taking antidepressants, which can elevate levels of serotonin in the skin. In the Buck/UC Berkeley study, this side effect was observed in mice, too — the drug Zoloft caused intense scratching, which vanished when HTR7 was ablated. Given that in humans HTR7 is also expressed in the neurons that innervate the skin, this new gene may well be responsible for itch in human patients taking antidepressants.
‘An estimated 10 to 20 percent of the population will suffer from chronic itch at some point in their lifetime,’ said Brem. ‘In addition to eczema, chronic itch can stem from systemic conditions including kidney failure, cirrhosis and some cancers. Understanding the molecular basis of chronic itch is of significant clinical interest, and now there is a new target available to explore.’
Materials provided by Buck Institute for Age Research. Note: Content may be edited for style and length.
Journal Reference:
Takeshi Morita, Shannan P. McClain, Lyn M. Batia, Maurizio Pellegrino, Sarah R. Wilson, Michael A. Kienzler, Kyle Lyman, Anne Sofie Braun Olsen, Justin F. Wong, Cheryl L. Stucky, Rachel B. Brem, Diana M. Bautista. HTR7 Mediates Serotonergic Acute and Chronic Itch. Neuron, 2015; DOI: 10.1016/j.neuron.2015.05.044
Cite This Page:
Chicago
Buck Institute for Age Research. “Serotonin receptor is involved in eczema and other itch conditions: Research points to new target for treatments.” ScienceDaily. ScienceDaily, 11 June 2015. .
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Anne-Marie – On your comment to the previous blog I was interested to see how E45 helped you thank goodness – As after the first flare up of excema I had ever had I tried E45 which caused worse itching , redness and quite severe burning sensation. It is recommended for use on info outside the box but read further info and it is stated that it can have this completely contrary effect. A better warning should be on the box to warn us to read the extra info – guess it would put people it suits off using it -even after warnings on Rxisk re meds I relied on the info only on outside of the box.before using it – I carried on not realising it could have these serious side effects thinking it was a symptom of the excema. –
E45 Itch Relief Creamwww.medicines.org.uk › emc › files › pil.378.pdf
PDF
POSSIBLE SIDE EFFECTS: E45 Itch Relief Cream is usually well tolerated, however side e ects may occur which can include a burning sensation, redness, itching or pus. May cause irritation if applied to broken or inflamed skin.
Vitamin E cream has proved great for my husband’s varicose eczema, whereas E45 was not good. You can either buy a pot of cream, or buy capsules and open them to squeeze the oil out. Before that, the itching used to drive him crazy, little red spots much like the Effexor user has described.
Talking of vitamins, and yes, I apologise, I know this isn’t the right place to air this but I do think it’s important with regard to helping ourselves with ‘staying alert’ re Covid 19. I did an experiment recently, and repeated it several times to make sure it wasn’t a flook. We got an oxygen measuring gadget you put on your finger, because a paramedic friend said most people starting to get bad Covid 19 symptoms are shown to have low blood oxygen levels, he sees this in his ambulance daily. So we keep an eye on our blood oxygen level. We’ve found that if we take a reading, then afterwards take 500mg vitamin C, our blood oxygen level goes up on average by three points when we read it again soon afterwards. I think this indicates that Vitamin C does oxygenate the blood. No one seems to like us talking about Vitamin C. I’m not sure why. But Wuhan doctors produced reports on its effectiveness in Covid 19.
Very interesting Heather. I think I could do with experimenting with vitamin C as my blood oxygen level is always lower than it should be according to the asthma clinic readings!
I am too EXTREMELY WILD with both my dr & my physiologist, they both want me to taper off 375 mg of Venlafaxine after I have been on them for 10 years & also I am on a lot of drugs as bipolar lite, the antidepressants do not make me on a high though, after all @ the end of the day the patient suffers which is me, then they wonder why people commit suicide.
DRS & OTHER MIND DOCTORS NEED TO LISTEN TO WHAT THEIR PATIENTS WANT not what they want
I am gng to fight for this till us patients get what we need not what they think we need
This is all very interesting. I was on velaflaxine for 2 years. Started tapering after year and a half. Was taking one every other day, then one every 2 days and so on. Worst withdrawal symtom was nausea.. had that alot. Then in Sept 2020 I started to develop a skin rash. Its was very weird as it would come up like hives and red patches and itch like hell. But would be gone in about and hour. Also my head, groin, tummy itches alot and only relief is antihistamine. Dont seem to be able to live without them. This has been happening now for nearly 6 months. Just want to know if anyone else has experienced this because it adds to my anxiety. Keep thinking I have lymphoma now. Really not sure wot is happening. If anyone could help that would be great .
Just to share my story. I’m currently withdrawing from Venlafaxine, been on 150mg for about 3 years. I’ve come to the conclusion that while some people tolerate withdrawing quickly (apparently), I’m just very sensitive to it.
One psychiatrist put me up to 225mg to try and improve depression symptoms and it broke my brain. Started going hypomanic, trending upwards. Then when I went back down to my original dose I basically got ADHD and memory problems for 2-3 months(!) afterwards, let alone the immediate brain zaps. So I went for private care, which is better with giving me options I’m comfortable with. I did agree to Lamotrigine and Pregabalin adjuncts first for suspected bipolar-lite genetics and mood stabilisation. We agreed to taper off venlafaxine due to continual side effects and no noticeable antidepressant effect.
After trying to battle it out following a taper twice as slow as my psychiatrist planned, I’ve done more research and am just working down as my body needs using a pill splitter.
Psychiatrist plan: 150mg, taper down 37.5mg per week. According to her this was a slow taper, some people only needed 4-7 days to completely come off it. Doubtful, but whatever. I’m the patient here.
My original plan: 37.5mg reductions every 2 weeks. I got down to 75mg semi-alright, then tried 37.5mg, but this lead to similar withdrawal effects that I’d previously experienced. I also got balance problems when walking.
I’m a school teacher, and once it got to the point of interfering with my work I went back up and held my dose for 3-4 weeks until everything calmed down.
My current plan: Quarter the beads and reduce by the 9.375mg per week. I’ve just started getting minor withdrawals, so I might hold the new dose for several more weeks. I am running this taper completely my way, and the psych can just jolly well wait until I’m ready to finish up.
I still find myself having memory issues, concentration problems and insomnia/sleep latency/nightmares. A bit of skin itching. But it’s manageable. I’ve withdrawn from multiple antidepressants over the last 15 years but this is by far the worst. It makes me feel not myself. I also feel ashamed, as according to all the doctors I’m not supposed to feel this way and should just get on with things. It’s tough.
Reading all the comments here and in the previous posts I realise even if my situation is a bit rubbish, other people have got it a lot worse. At least I have hope that with time I can get off this drug and my body and brain will heal. I cannot BELIEVE that all of this isn’t making it into the literature and impacting prescribing advice.