The Invisible Doctor
From her first email M seemed completely believable. Everything since has added to her believability. So why is she not believed? This post offers another example of repeated Sanctuary Trauma, outlined in last week’s post, in earlier Kidnapped Daughter posts and in all posts tagged Medical Kidnap.
In The Beginning
Thirteen years ago, this spring I went through some dramatic life events that involved loss and trauma. Our family home burnt down. Then I was studying abroad, and I was a victim of a violent robbery. Unfortunately, I began drinking a lot which led to me making a lot of mistakes that I am not proud of. One of these mistakes led to a brush with the law. I was overwhelmed and very scared. The local GP I saw referred me to a psychiatrist, who said all my problems were down to Bipolar 2 disorder and she was going to sort everything out for me. She was going to make all my problems disappear and take care of me. She was beautiful and very convincing. I really got the impression she knew what she was doing.
The diagnosis was based on my life story or an anecdote I gave her in that first appointment. I had been “depressed” a few times in my 32-year-old life, mostly in relation to break ups and I had a lot of grief stored up in my body, that I had never felt through after losing my mother as a young child. But mostly I was truly terrified of what would happen if I was reported for having added too many items on the insurance claim after a break in at our digs.
The psychiatrist said it would be good for me to go to a clinic for a while. She said it was really nice, almost like a hotel, and that I would meet other normal people like myself there who needed extra support. I accepted it. At that point the most important thing for me was to get out of the threatening situation I had put myself in with the insurance claim. I had 3 weeks at the clinic, I had a great time there, I got to work on my issues from the past, in what I thought was a safe environment.
I was put on medications. Something called mood stabilizers I was told not to worry at all about the packaging. Although it was written that it was for people with schizophrenia (Seroquel) I should not worry about this at all, in my case she said, this was not an antipsychotic, but an antidepressant and a mood stabilizer and I was told that these medications worked like clockwork for someone like me who was normal with a mild mood disorder. And lots of very successful people had bipolar in various forms for example the founder of CNN, so I should just trust her. Unfortunately, I did.
I felt drugged on the medications. But the doctor said not to worry, the side effect of feeling drugged would disappear. I thought my heart was going to jump out of my chest and I could not breathe properly so it was very uncomfortable. Beside these unpleasant side-effects I cannot tell you if the drugs helped at all.
But now I felt very dependent on my doctor. After all she had convinced me she was going to take care of me and help me. After one and a half years I ended up back in the clinic, all my family problems resurfaced. My meds were changed. I was put on a combination of Seroquel, sodium valproate and Lamictal. Now I had constant cognitive problems, memory problems, panic attacks, feeling a strange sensation of being outside myself, disintegrated, and a depression that was really different from my previous depressions.
Previously I had felt sad and overwhelmed, full of grief, but I was still myself. This was something else. I was really sick. It was so bad that I constantly pictured offing myself by train. I later found emails I sent to my doctor saying to her it must be the medications that were making me so sick and asking her to take me off. She said just go off them if I wanted to. There was no offer to help me with this although she had been so eager to help me get on them even putting me in a clinic to do it. I did not dare to go off myself.
I Can See the White Coat
When I finished my studies. I went back to my home country. I was feeling happier and found my vocation but still felt very bad from the drugs and asked to see a psychiatrist. In my country we can bring our medical record to any new doctor, and I asked my psychiatrist to send my record but she refused.
I asked the new psychiatrist for help to be taken off the cocktail of mood stabilizers and antiepileptics. She said, she didn’t think I was bipolar but that I am depressed and must take medications or they cannot help me. If I had a headache, I would not take half a paracetamol. With these mental problems, I have to take an appropriate dose of their mood stabilizers. I did what they told me as I didn’t know what else to do. They took me off the one sodium valproate and increased the Seroquel. After a while I stopped feeling mentally sick and more like myself again. I stopped having all these weird symptoms. I had also started going to a very successful therapy. I was also now sober in AA.
After 2 years of not being depressed I asked my GP for help to get off the meds. I had to apply to get back to a psychiatrist I had seen previously. She took me down from 300-200 on the Seroquel in one go and told me I would most probably experience a wonderful awakening. I was not worried at all, I thought I could get off the drugs in a few months. I had a nice job lined up and it was super exciting.
Within 3 weeks, just before changing job I completely and totally crashed. It started with flu like symptoms, brain zaps, paranoid thoughts, and it just got unbearable. It was as if my head was inside a tumble dryer, whilst someone played soccer with my brain. I could not concentrate, I could not hear properly, I could not see properly, I cried like I carried the sorrows of the world in my body, unstoppable overpowering. My anxiety was so intense I had never experienced anything like it. I had insomnia and what I now know is akathisia, I could not be still. It is the most traumatic gruesome horrific torture anyone can imagine. Being inside your own body is just constant agony and there is no escape.
I told my doctors that this was an horrific withdrawal. They recorded that in my notes. But instead of saying yes this is truly horrific, and it is awful you have to experience this, and we are sorry, we didn’t know that going down 100 mg at once was too much and too fast, I was told that it is my own brain that is sick – I experience this horror because I have a serious biological brain disease.
When I told them they were not treating me well for not listening to me or understanding, it was as if my words became a proof that I am mentally ill for just saying that. They totally ignored my opinion. They massively downplayed my horrific symptoms. Brain fire, akathisia and skyrocketing anxiety, blurred vision, insomnia, dramatic weight loss and so on are not mentioned. But I also described that it felt like wolfs fighting in my head – this they picked up on. They said you have bipolar disorder after all.
I ended up taking 400 Seroquel and after a month’s time I could sleep a few hours but it felt as if I was not sleeping at all. I described it as sleeping like an Indian, always on guard, ready to get up and fight every second of the night whilst trying to sleep. After 2 -3 months I slept better but my emotional state was completely flat. I had no inspiration from that time. Everything was so hard for me academically. This worried me a lot. The crisis had also made me start smoking again. Something I had stopped for 5 whole years.
After this life-threatening withdrawal, that happened 5,5 years ago now, every time I get my prescription from the pharmacy, I know in my heart I take it because I know how sick these medications can make me. I am just afraid of the drugs and what they can do to me.
Is There One Good Doctor in Sodom?
I still wanted to get off the stuff and so I applied again to see a psychiatrist in the new town where I started a new job. When I read my record later, he never mentioned withdrawal, although this was why I came to him. My concern about withdrawal and the damage the stuff had caused me is totally ignored, instead he establishes a new type of depressive disorder diagnosis in remission for me. When I said my husband and I wanted to try for a baby he agreed that I could lower my doses despite the fact that he writes in the journal that he thinks I am overly concerned, Lamictal and Seroquel is proven to be safe in pregnancy he writes.
I started tapering and I got off the Lamictal without noticing anything.
Because of work I moved again. This time I thought I had a nice psychiatrist. He seemed like a genuinely good guy to me. This one also did not think I had bipolar disorder. He said at one time maybe I drank too much and that was why my life had a difficult patch for a while, but, yes, he will help me get off the medication. I say I want to go very slow because of the last withdrawal episode was so horrific, I do not want to take a chance on it happening again. I say I will not go faster than 25 mg every 3 months. He says this is very slow. Nothing will happen – really.
After 2 years I am down to 150 mg and pregnant. After my baby is born, I go down to 125 and I start experiencing symptoms, I am depressed, and it is not going away. I lower my dose to 100 mg and change to depot because I need to look after my baby in the night and the Seroquel makes me so tired and there is no 25 mg depot tablet. I feel terrible like I am infected with a sense of doom. I feel no joy, I know I love my child and my husband but I just can’t feel it. The only feeling is an agonising regret that I changed jobs. I ask my GP and the psychiatrist what it is, if it is post-partum depression or Seroquel withdrawal symptoms but they cannot tell me.
I start listening to James Moore’s Let’s Talk Withdrawal podcast and educated myself on the issue of psychiatric drug withdrawal. I am now sure this is what I suffer from. I tell my psychiatrist that I no longer have any doubts, that I know it’s Seroquel dependence and tapering makes me very dysphoric. He told me again and again that it was no use for me to think about what I am going through as withdrawal. He says he now thinks I have a serious mood disorder after all, and that my biological brain disease has been masked by the Seroquel. In my last meeting with him I said we do not need to have any more contact as we are on different planets regarding these issues.
After that meeting I read his entries to my medical record. I was surprised as he said this time last year that my fear of withdrawal symptoms is irrational, and he regrets I am not medication free when giving birth. He attributes my previous withdrawal problems to my strict father and my withdrawal symptoms to an emotional crisis.
Another thing surprised me as he always seemed like a good and empathetic man to me. When I spoke with him in the autumn, he was fishing for me having hypomanic symptoms. He asked me several times if I sometimes felt very happy, not just very depressed. I said again and again that I do not feel very happy, I can feel normally happy/ok some days, especially in the evenings if I have met other moms in the day, or been at baby swimming, but I don’t feel very happy, just normal. In his journal he has written that I had weeks where I was very down, and then I had weeks where I was hypomanic, with elevated mood. This is simply not true. It made my husband very angry that he was straight out lying in the record to confirm that the Seroquel has masked my so-called underlying serious biological brain disease/ mood disorder.
After leaving him, I went to a private GP for help to come off this stuff. I told him about my withdrawal experience and what I thought about needing help with Seroquel dependence and how much I want to come off it.
After listening to my request, he said that I was right that Seroquel was not an herb, (I did not say anything about herbs or nutrition at all), but he concluded that for me it was medicine. He portrayed a very bleak future for me, he said if I did not increase my dose as soon as possible I would end up an old lonely lady as I would lose my job, my child, my husband and that I would go on welfare.
He did a quick google search, I assume in his medical handbook, and concluded it was best for me to increase the dosage to 200. He said he thought I was manic when I was diagnosed first even though the reason for a bipolar 2 diagnosis was because I was not manic. The consult ended on that note. My understanding is that when they read the “medical bible”, they decide to listen to that, and ignore the difficulties a drug can cause. They seem to ignore my experience. It really has no value for them.
After my Seroquel increase now 8 years ago, I had a bad pneumonia that almost killed me, I was in hospital for over a week and the antibiotics did not work at first. They found out that I had a blood disease called LGL leukaemia. I have been checked for this every 6 months since. Last summer when my Seroquel dosage was much lower the haematologist told me he didn’t think I had LGL leukaemia anymore.
Very recently, I told a new haematologist, a youngish man, who I thought could be open and willing to listen. I said I think I had this disease because of Seroquel and he enthusiastically agreed and said these strong medications can interfere with blood cells. Since he agreed they could cause a blood disease and an almost lethal pneumonia I told him about my withdrawal problems in the hope he would believe me and maybe know someone who could help me off. He turned completely and did not want to have any opinion on psych. drug withdrawal. It was as if I was a threat to him. I told him not to write anything about it then in my record. He very reluctantly did not mention my withdrawal problems, or diagnosis.
Full Length White Coat
This translates as you should believe Us (white coats) but for us to believe you we must have proof. This is Jorge-Mario Bergoglio in White in Chile dismissing the requests to be heard by people who have been sexually abused by the Black Robes. These images did not come from M.
When I walked out of there, I felt crushed. It is a form of abuse. The White Coat turns into a judge with a hammer. Someone wrote that being on these meds feels like a life sentence. It certainly does. I just want to work, I love my job, I want to be a good mum, and a good partner to my husband and enjoy my life with them. Yet presenting this problem to a doctor in hope of getting support and help leaves me feeling like a criminal.
My last try was with my current GP. In my country everyone gets assigned a GP from the public health system and one has the right to change GP two times in one year. I came to him well prepared. I referred to the literature and to journal articles to explain my withdrawal problem. He did seem to believe me and said he would like to try to help me off, and that it wasn’t right that I should be left in a state of flattened emotions, bad memory, and not really feeling much love or joy.
But there is a but. He will not help me unless I see a psychiatrist that he can ask for advice if he needs to. I told him I had read my records and that none of the psychiatrists I have seen, young or old or middle aged, male or female, white or Asian, none of them believe withdrawal is real. I am not sure if he got his head around this. He said that he had to do it or his medical licence might be in danger and he could not risk it. Apparently psychiatric drug withdrawal is so threatening to a doctor that he fears for his livelihood if he agrees to help. My problem is how can I trust him to help me if he is going to trust the advice of someone who won’t believe my problem is real. How can I get help with a problem that for them doesn’t exist?
I did have emotional problems, and I did get help to sort them out. I have been sober for 11 years and I have worked so hard for my recovery. It breaks my heart that simultaneously I have been taking some very damaging chemicals without fully understanding their effects. Now I see how they are constantly working against me. I was never what I later experienced as mentally sick before I got on antipsychotics, antileptics or so-called mood stabilizers. I now know that coming off them leads to a “chemical imbalance” and is giving me these artificial problems.
The worst is this feeling that I am hiding a huge secret and doing my best not to be found out for trying to come off this stuff. I cannot say this at work or anywhere. I have tried the Facebook groups, but I am afraid it can show on my profile since I am a public person in my job.
So, at the moment I am not sure what to do, to be honest changing drugs scares me, but being so dysphoric is also scary.
I am not sure how to get off the last bit of Seroquel. I will be very grateful for helpful tips. In my country liquid Seroquel is not available. My biggest problem is this dysphoria and a floating sense of doom. I know I love my family but I can’t feel it. I did increase my dose by 25 mg and 4 days later the dysphoria lifted a bit, the sense of doom is milder, but I definitely am in a negative mindset still. I have learnt that this is a lonely quest. I have tried to talk about it in my AA meeting, but people there don’t know what to think, since it is never spoken off or recognized anywhere publicly. Most people will not get involved or take a stand and I don’t blame them. It is almost impossible to believe that drugs prescribed as medicines to cure and help, can cause such immense trauma and sickness.
What is it with psychiatrists? Are they not able to read? Are they under some sort of spell? Although there has been a lot of problems and traumas in my life, nothing can compare to the trauma of my first withdrawal. It must be worse than being in a concentration camp because one is tortured from within 24/7.
Seroquel (quetiapine) can be nearly impossible for some people to get off. This is true for the closely related clozapine, olanzapine and mirtazapine. We need suggestions as to what people having difficulty withdrawing from these drugs can do to make stopping somewhat easier. Tapering on its own does not look like the answer.
This post also makes beautifully clear that someone with awful problems on one drug can find other drugs no problem.
The only way forward is to believe what a person is telling us. What good is a white coat without a doctor who is able to believe us?
This will be picked up in next weeks post Strangers in the Room and the Black Robe – White Coat post a week later will explain the cryptic People Acknowledgement note below.
People Acknowledgement
RxISK acknowledges that its life source lies in the experiences of people who have not ceded the rights to explain what is happening them when harmed by treatments given by people on a Special Mission.
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MMMmmm
Lucky M.
Why lucky M?
Because she has finally landed.
She has landed on RxISk, the site for sore eyes, where the Riskers land who all began with the promise of riches and then led down the rabbit-hole. Where so much is promised, eternal salvation.
We will restore you, we will heal you, we will unlock all of your demons and give you moonshine.
Where so many have traipsed, where so many have unburdened themselves, where so many have sought a holy-grail.
This is the stuff of nightmares, where the living die, where in the face of innocence, the cuckolded are laid bare.
On goes the kidnapping of taking advantage.
God knows, in the ten years since RxISk developed it’s skills
People Acknowledgement
RxISK acknowledges that its life source lies in the experiences of people who have not ceded the rights to explain what is happening ‘to’ them when harmed by treatments given by people on a Special Mission.
What truly baffles me, is where are they?
The Listeners and Seekers.
God knows, the media has been awash with violence, homicides and suicides for donkey’s years from psychotropic medicines. Where were they, the ‘listeners and seekers’?
Why is it that Psychiatrists, Doctors seem to live under a mat of Hessian, a mat crafted from a Bamboo, that loses them their Basic Instinct.
They have lost any sense of a ‘Basic Instinct’ and they have lost.
Many people were optimistic that a tide was turning, a while ago, but M, desirous of just something to end her plight, has landed in a sea of hands grappling for an air of wisdom where her voice can be heard and not swamped by an invicissitude of the cool, misplaced, cold-hearted, arrogant and the defying cauldron, of ‘out damned spot’ …
It’s ironic because they will never be able to get the guilt off their hands.
Thank you, Annie, for this beautiful poem. It really moved me. And about the washing of hands, it made me think of that old anthropology book “A polluting person is always in the wrong. He has developed some wrong condition or simply crossed some line which should not have been crossed and his displacement unleashes danger for someone” (Douglas, 1966:114).
This is how it feels like when approaching a medical doctor with the problem of withdrawal. I am the polluting person. I have become some sort of dirt. When they labelled me with their DSM manual I transitioned to an unclean human and the process of washing me could begin. I am dirt and I am polluting their world when I complain about their chemicals. The pollution is destructive to me but not so for the health care workers. They need me to be dirty so they can keep on cleaning.
Somewhere along this process I have transitioned to the slave. My back is bent and they are building their careers on it. They get to be productive and have meaningful lives helping others. Whereas my mind and body is easily reduced to that of the mentally ill, my task is surviving. The help just goes on, but since their cleaning involves the chemicals that keep me trapped, I will never be free.
It’s not just the doctors, it’s the psychologists as well. Yesterday I went to my local bookstore and I noticed a name I knew, someone I used to meet at parties some 15 years ago is now one of the top people in his field so much so as he gets to publish self-help books for depressed people- in my country mental health care professionals work in teams, they influence each other, the doctors, the nurses, the therapists. My psychologist “friend” recommends Seroquel off label for sleep, and he says that 1000 mg or more is a normal dose for schizophrenia. In other words, my words: chemical lobotomy is normal and accepted also by psychologists. They are trained in feelings; I wonder how they came to believe that wiping them out was the right way to wash and clean.
When I see my “friends” face I always think of that song “up all night to get lucky” he was always so very happy. I wonder if he knows in his heart that Seroquel takes away a human’s ability to feel happy and to feel love? Is his heart clean? The system is clean, the medical handbook is clean, so I must be the dirty one, I must be the polluting one for saying there is something wrong with their chemicals. They need me to be dirt to keep cleaning away anyway. I am grateful for my Christian faith or I do not know what I would believe in anymore, certainly not governments or nation states or the goodness of men. Democracy is supposedly what we worship in my country. Democracy has lost its meaning for me, the song within me is that of a slave: “O nobody knows who I am, who I am until the judgement morning”.
How many times have we read stories in the same vein as this one by M? How many more will we read before doctors begin to realise what is going on under their noses?
The very worst part of this whole story is the fact that M has changed doctors and countries a number of times but the attitude every single time has been the same -don’t mention withdrawal as I’m deaf to that word.
So, after reading this tale I cannot see that encouraging patients to “find another doctor” is really going to make much difference. Maybe, instead of trying to compile a list of doctors who ‘listen and believe’ we should start naming those doctors who REFUSE to listen, REFUSE to believe and REFUSE to acknowledge the reality of withdrawal problems!
Thank you M. I also find your suffering to be totally believable; having experienced the tragedy of misdiagnosed, SSRI induced AKATHISIA leading to life-changing injuries caused by psychotropic drugs. ‘Antidepressants’, ‘Antipsychotics’, ‘Mood Stabilisers’ forcibly given to our loved one, who never had any mental illness at any time. I use inverted commas as these are marketing terms masquerading as drugs alleged to have specific ‘therapeutic’ actions. They do not. Many prescribers (including myself) have been naive in believing that ghost written, manipulated clinical trials, combined with Drug Regulation Authorities, afford evidence of efficacy and ensure acceptable safety. Now I feel both patients and prescribers have been betrayed. Is it this betrayal that leads doctors to refuse to believe their patients who report to them devastating adverse drug reactions and withdrawal syndromes? Medical rejection, denial and disbelief which cause such additional suffering, and which induce despair?
Have we forgotten the great clinical teacher’s words: “Listen to your patient S/he is telling you the diagnosis”. – (Sir William Osler). This is a basic tenet of medical practice. If we listened properly, why would we not believe? A patient intuitively knows when they are not believed. Trust is destroyed, and the crucially important doctor-patient relationship is lost, or no longer achievable. Without trust, there can be no therapeutic relationship. Without trust, we cannot learn from our patients. It is as if a dense plastic, Covid protection, check-out screen has descended between the consultation participants. Unlike a supermarket, this screen can never be removed.
The toxicities of psychotropic drugs and their intense and protracted withdrawal syndromes appear more likely to be routinely misdiagnosed as ’emergent mental illnesses’ than to be correctly identified and safely managed. They have been reported and denied for decades. When will they ever learn?
From Kidnapped Daughter 2.
“Each new psychiatrist only sees the damaged person produced by the previous psychiatrist. Their imposed injuries are thus falsely interpreted as features of mental illness. The history is presumed to be as recorded, differential diagnosis is never revisited. An adverse drug reaction is, as we were told, irrelevant”.
From another source:
“But the most pernicious of all is that the system appears to have a complete inability to appreciate when the treatment it gives becomes the problem that it tries to treat by adding more drugs, and, if need be, detains us in order to do so”.
I believe you M. Thank you.
“The toxicities of psychotropic drugs and their intense and protracted withdrawal syndromes appear more likely to be routinely misdiagnosed as ’emergent mental illnesses’ than to be correctly identified and safely managed. They have been reported and denied for decades. When will they ever learn?”
The incredibly sad thing is that patients totally believe they are mentally ill, that their mania from coming off AP’s is another episode and that akathisia is severe anxiety and depression making people suicidal from some terrible misdeed. Even more convincing is when you get tardive akathisia when off the drugs from months, there is some psychological upset that shouldn’t kick off severe anxiety but bang – AKATHISIA starts again. The perspective then from psych and the family/friends – What have they done to be in that state… they can not then see you in any normal way without suspicion, never mind a victim who has suffered horrifically. Your relative is very lucky to have a switched-on doctor, totally knowing what happened and not ignorance full of menacing suspicion.
Yes Chris, very fortunate indeed. However that took some 3 – 4 years. During this time, the arrogance, ignorance (of life-threatening, adverse drug reactions) and the diagnostic incompetence of the initial ‘mainstream psychiatrists’ was beyond comprehension. They couldn’t even manage routine fluid and electrolyte balance.
They coerced, labelled, kidnapped, incarcerated, forcibly poisoned, and were responsible for life-changing injuries. This is inexcusable. In any other area of medicine, those responsible for such abuse and mismanagement could be held to account. There was never any mental illness for them to treat, only barn-door obvious SSRI induced AKATHISIA* and then, multiple systems, psychotropic drug induced ADRs. Despite this established fact, her labels-for-life remain in her medical records, unredacted. Eleven years later, these invalid ‘diagnoses’ continue to deny her access to unbiased, accurate and conscientious medical care for any, and all subsequent illness.
*(It was obvious to anyone if they had been taught that SSRIs/SNRIs cause akathisia but this common toxicity was hidden from prescribers for some 30 – 40 years. It appears that this lamentable lack of awareness continues, as does ignorance and denial of PSSD).
I believe you. I was on that merry-go-round with doctors for years and years of pure torture. I was so desperate I made a private FB group to find out if anyone else was going through this (never thinking anyone would join). I was shocked when people started joining and sharing their stories that resembled mine.
I joined Surviving Antidepressants Forum and other FB groups, websites, etc. and have learned so much about how to taper safely, supplements and natural remedies to help reduce symptoms, adding lots of coping skills, etc. etc.
After 30 yrs. being on these drugs that I was told I would need for life and after these doctors damaged my central nervous system I am now completely drug free. It took many years to get off the cocktail of drugs they had me on but I can tell you, it’s worth it in the end. If you’re afraid of FB groups, join Surviving Antidepressants Forum. You can used any name you choose for privacy.
This may be of no use but it is my experience getting off Seroquel.
Two years after quitting klonopin I still had wicked insomnia. I asked for Seroquel for sleep and took it for 7 years, 25mg and never more because more made me feel terrible. It stopped working very well within the first year but seemed better than nothing and nothing else worked at that time.
Eventually I would try to taper off. I didn’t know about liquid versions and compounding then, so I just cut the pills as best I could. I was lucky not to have akathisia or any other seriously debilitating symptoms, save insomnia.
That last 5mg or so was impossible to quit, so I kept taking it to function. Then one day I realized I hadn’t taken it in a few days and yet had not experienced insomnia worse than my baseline (which was still awful, and by this time I had also resorted to using a small amount of cannabis).
What had changed? Two days before the realization I’d forgotten to take Seroquel, I’d had my intestines power washed by a gastrologist. (I say power washed because I refused sedating medications and thats what I saw happen on a fun little TV).
So I’m sharing this somewhat embarrassing story to suggest that perhaps gut health is involved in withdrawal, perhaps in a major way.
I do consider that it may have been psychological – that I forgot to take it and was therefore unaware. But I really don’t think that’s the case. Sleeplessness usually reminded me.
This now has me curious about fecal transplants, which may be gross, but surely no worse than the crap we were prescribed.
My word Laurie, this takes us in a totally different direction doesn’t it!
Your comment came just too late for our zoom group meeting this evening – it would have made for a very interesting discussion I’m sure.
We have shared the new post ‘The Invisible Doctor’ with the group so they will read your comment and maybe add a comment of interest in your idea.
I have read about faecal transplants online just now and see that within the list of conditions which may possibly benefit are asthma and hayfever . I shall stick to my wheezing and sneezing etc. I think!
For real, Mary. I doubt it’s anything people will be lining up for and that’s probably a good thing.
@ Laurie
This had me looking up my medical records that I kept from October ‘98 for when I had ‘flexible sigmoidoscopy’ too but as my circumstances were different I wont go there. Think though, your hunch may have some substance.
As 90% of the body’s serotonin is found in the gut and gut bacteria produce both serotonin and dopamine, the washout may have well been responsible. Was able to quickly find this paper (below) which shows some scientific evidence as I’ve already been down the gut biome route so know what to search for but there are many other papers about the gut biome and it effects on mental states. I wasn’t on any medication but often I could not switch off in the evening nor go to sleep and it correlated to what my guts were doing.
Tried explaining all this to my nutritionalist but she wasn’t interested in the research I was doing to resolved it nor how I eventually resolved it (when we sometimes bumped into each other non-professionally). So other than being told I didn’t have what I didn’t think I had but my GP thought I had, it was a waste of time being referred to both the nutritionist and endoscopists. Still, I was able to watch that trip on the little TV in the endoscopy dept free of charge on the NHS and a few free cartons of liquid nutrition from the hospital. Appears from this blog, too many in healthcare still have their blinkers on with cotton buds in their ears more than twenty years on. Think I’ll shut up at this point as I’m getting annoyed again.
Bretler, T., Weisberg, H., Koren, O. et al. The effects of antipsychotic medications on microbiome and weight gain in children and adolescents. BMC Med 17, 112 (2019). https://doi.org/10.1186/s12916-019-1346-1
The paper doesn’t quite say this but I think one can conclude that these drugs can create a vicious circle.
For the curious. Mikhaila Peterson did a video on Do-it-yourself Oral Fecal Microbiota Transplantation which got removed from her channel. But here it is on a different link: https://www.youtube.com/watch?v=3aDGDTp8d3A
However, as Fecal Microbiota Transplantation (both orally or by the other route) is a bit drastic, I’d suggest reading up everything one can about how to return to a healthy gut biome just by being mindful of what one eats. Should that help with completely coming off medications also, then that’s great. If one’s biome is out of kilter due to continuing with medication then one imagines the chosen diet needs to be more strictly followed. One problem I’ve heard is that for people on some medications (those that raise blood sugars and Seroquel is one) the diets initially cause extreme sugar cravings and they need to be mentality prepared to cope with them. Maybe anti-diabetic medications could cause problems too so consult doctor first. As seems to becoming more necessary these days, it a matter of self-education and finding out what works for you. There is a lot of info available today. This video is just for example and others cover different aspects. By watching and reading enough papers one can competently tailor one’s own treatment.
1-Week Gut Reset Diet – Meal Plan & Guide
https://www.youtube.com/watch?v=p1XKNxoZRAE
Pogo, that sounds frustrating. Did you have success with being able to settle down and sleep after changing your diet? What did you do?
@ Laurie
Was soon feeling relaxed in the evenings but sleep was still very slow to come each evening.
Was able to avoid the frustration arising from insomnia by adopting the frame of mind where I remembered how nice it was to lay in late on a Sunday morning back in the days when I had a hectic life and since I could now plan my days so I didn’t have to get up by a set time, then it didn’t matter how long I lay there in bed just day-dreaming. So I just lay there enjoying it. This had been totally impossible before changes to the diet, because my mind was far too busy and restless to let me relax and I suffered often from bouts of ‘restless leg syndrome’. The latter vanished as well. For someone with commitments that requires them to be up at a certain time though, adopting this frame of mind I’d agree would be nigh on impossible.
On the subject of sleep. This may not apply to everyone but someone might find it useful.
One thing I found out about why going to bed earlier did not help me at all. The sleep cycle is governed by three hormones. Everyone knows about the hormone melatonin inducing sleep but perhaps not realise that the level of wakefulness is governed by the other two. It has been suggested, based on research done on people with ‘Seasonal Affective Disorder’ (SAD), that these hormones are out of synchronisation with each other. The level of these other two hormones don’t start to diminish a soon as daylight fades like they should. Where as some people find taking melatonin capsules helpful, I’d rather steer clear of taking any hormones. Instead I found that if I simply wore sunglasses outside from 5 pm when the weather is sunny and if I have dimmer lights on low indoors from that time in the winter, then that helped a lot as well. Maybe, by giving the pineal gland those few extra hours to ramp up melatonin secretion from the ‘day’s average base-line’ is the reason for this. I say ‘day’s average base-line’ because sunglasses worn outdoors don’t really drop the light reaching the eyes to the level of a what appears to be a brightly lit room, so it must be (I think) the the ratio of bright-to-dark blue end of the spectrum that is important here.
Fortunately though, this issue has almost gone now but I still do run red-filter screen app on my computers so that automatically, the screen slowly dims and it lowers the levels of the melatonin disrupting spectrum as the evening starts, without me having to remember to do anything.
If insomnia is solely due to the discontinuation of medication then all I can suggest is finding an opportunity where one doesn’t have to get up by a certain time each day and just lay there each night (with the curtains open) and see if the body’s circadian cycle drifts back into synchronization naturally. Another possibility. Some people find if they take half the dose of their sleep aid about 90 min earlier than normal, they still fall asleep at the same time as before. I’ve looked up Seroquel and peak plasma concentration is reached after 1.5 hours with a mean terminal half-life of about 6 hours. So there is scope there for experimenting with bring half doses forwards. This may also allow the day time hormones to take over earlier the next day thus bring ones sleep pattern forward the next night.
Where you ask “What did I do?” If you mean diet wise. I read a book by Prof Jonathan Brostoff (who was Reader in Clinical Immunology at the Middlesex Hospital School in London) three times (plus loads of other medical stuff). Then did an elimination diet (as explained in book), keeping copious notes as I went. Felt better in under two weeks! Had a few ups and down as I experimented with expanding the range of what I could eat without the problems returning but otherwise my guts didn’t give me any further problems and my head felt on a more even keel.
Brostoff book is good from the point of view of explaining the science of what many doctors are not appreciative of, so I can recommend it. GP’s are familiar with IgE mediated allergies but too unaware how stresses on the body, be them physical, chemical (which can include pharmaceuticals) and from infections etc., can cause the body to start reacting badly to otherwise normal foods in a way that the individual (or his doctor) is unaware of. Jonathan Brostoff lays open the whole picture for the layman. His book is: “The Complete Guide to Food Allergy and Intolerance”
Thanks for your reply Pogo. I agree with so much of this. I rarely schedule anything before noon and as you say, it helps immensely.
Melatonin has worked for me here and there in the past but now only makes things worse.
Funny thing about light – I have grow lights for plant starts that I turn off when I get home from work after 10 pm. If I take any time to admire the plants I end up paying for it!
I am definitely going to check out that book.
Thank you for all of your ideas and suggestions, it is really interesting. I read somewhere a woman who had struggled with Seroquel withdrawal for 5 years, she could not get off until she was put on spironolactone, she said she did not have any withdrawal symptoms after she was put on it and refers to an article about spironolactone and opioid withdrawal that says the stuff decreases the somatic signs of opiate withdrawal by blocking mineralcorticoid receptors. Anyone knows about this? or have tried this drug?
400mg of quetiapine is horrific
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“An inquest into Dr McPhillips’ death is due to be opened at West London Coroner’s Court on April 7.”
One to keep an eye on
“Leading psychiatrist who helped Frankie Bridge back from the brink after she suffered breakdown dies in suspected suicide”
Metabolising interactions with foods, herbs, spices and other drugs is important with coming off psych drugs. By chance I found this a number of years ago it made me look into it in more detail and change my eating and drinking habits coming off psych drugs. It certainly helped.
https://www.todaysdietitian.com/newarchives/121610p26.shtml
On Wednesday we – prescribed medication withdrawal peer support Prestatyn -. had the latest of our fortnightly zoom meetings. This was a general, information sharing meeting. We discussed the post above, shared the link and concentrated on the final part of the post – about quetiapine and other drugs that prove almost impossible to quit for some people, looking for ideas to support when tapering. A good few seemed to know mirtazapine – is that the ‘go to’ drug of the moment I wonder?
Of those, one young lady had managed to withdraw from her dose of 15mg – issued mainly for insomnia – which she had taken for 4 years, in a matter of 5 months – but had to go back on it after a couple of weeks of dreadful suffering. She has not attempted a reduction since that time and is now concentrating on the removal of her citalopram instead, following three failed attempts at withdrawing that too.
A young man knew mirtazapine from a few years ago when he was put on it when suffering from cold turkey removal of Venlafaxine after 6 years of taking that. He had been off the venlafaxine for 5months when he started taking the mirtazapine and was able to continue full time working until 7 months later when, having had his dose doubled to 30mg he developed what he now knows to be akathisia and the dose was immediately reduced back to the original 15mg. He was taken off it,
by a locum psychiatrist who told him that 15mg was not a therapeutic dose for mental health problems, and put on paroxetine. He was in and out of his regular job during this time but doesn’t know whether it was the removal of mirtazapine or introduction of paroxetine that accounted for this bad time. This person is still suffering many problems, both physical and mental but cannot possibly know which drug to blame due to the massive assortment he’s been on over the years.
Another young man is in the process of withdrawing from quetiapine. He was on 300mg and has taken away 50mg in one step. So far, he is fine. He is following Mark Horowitz’s plan and expects to find reaching 150mg remaining to be the time when he will start to suffer.
Shane, of course, has reduced his quetiapine dose from 400mg down to 125mg. He does his reductions in 25mg steps and they were horrendous. We now wonder if his change of diet (following his cholecystitis in December) could be helpful when he returns to reducing the quetiapine further. The only suggestion that Shane could provide for making matters easier in withdrawal was to accept that it takes as long as it takes – that each person is an individual and suffers in their own unique way.
We then moved on to discuss a question posed in a previous meeting – “Has anyone tried Hyperbaric Oxygen Therapy to support withdrawal?” By this week’s meeting, one of our members had found out that an MS charity has these chambers and was lucky enough to be able to visit his local centre. There, he found that they are quite happy to support non-MS sufferers. It is roughly £20 a session and some seem to reckon that 20 sessions is a good number to have, maybe weekly, to ease the physical pains. He found that some find relief, after the completion of their block of sessions for, maybe, six months before they need a top-up. Others had found that the need for more sessions was apparent after a couple of weeks. Again, we find the usual “individual differences” I guess.
This person is due to start his sessions as soon as his GP issues his consent for it to start. This is a matter of great interest within the group with another two people looking into two other MS centres at present. We will await our guinea pig’s reports with interest!
When we next meet, I shall introduce your idea, Laurie, and we’ll see if there will be a willing guinea pig or two for that among us too!
Mary,
Is it possible to join your zoom peer support meeting?. it would be really good I think to have a place to talk about how the drugs affect my life and also to listen to others and learn from others who struggle with these drugs and their consequences. I am one hour time difference to you – if this is not too big I would love to join your group. Thank you!
Hi K,
Yes of course you can join our group. We meet fortnightly, on Wednesday at 6pm GMT.
If you send me an email to:- ellen.hennessey@btinternet.com ( that is me, my first name is Ellen and BT like to stick to first names!) then I can get Shane to send you the link for the zoom meetings.
See you next week.
Mary
I would like to share with you my concerns regarding the trauma caused by doctors and their effects on our ability to properly support members of our group.
Our aim is to “support in withdrawal” – whether that is during the actual withdrawal or the suffering at the end of the withdrawing or even many months down the line.
As we have said many times, each person’s story is different and, most times, simply LISTENING and BELIEVING and SHARING THE EXPERIENCES WE HAVE WITNESSED seem to relieve the anxiety of most. As lay people, of course, we can offer guidance as to the relevance of the symptoms suffered to the withdrawal but we cannot establish with certainty the irrelevance of a possible physical cause.
Over the past few months, I have worked closer with one member through emails and this has revealed to me how much easier OUR work within the group would be if only we could get doctors to do a bit of ‘joined-up thinking’.
I need to admit here that my interest is in each individual and their journey and in doing whatever I can to ease their suffering. I care very little about the drugs they have been on or the actual labels for their suffering – I merely want to be able to reassure them that their suffering is related to the trust they had in their doctors’ prescriptions. That “trust” is where it all falls down.
This particular member of the group has a wide knowledge in the world of ‘sports health’ and, by that, understands a lot more than I do about physical ill-health.
He has a variety of physical ailments, all of which have developed over the years of being on psychotropic drugs. At present he is being called to see a variety of experts concerning these physical ailments – which is good and in everybody’s interest. The problem arises whenever he makes enquiries as to whether or not these ailments could be linked to those drugs or his withdrawal from them. You can all imagine the response to that question!
I believe that these conditions of his are drug related; he knows that I feel that way but accepts that I cannot, and will not, refute the possibility of other physical causes.
He has now been told to take no more exercise than a ‘gentle walk’ by one “expert”; by a neurologist he’s told that his leg problem is due to intense tension present even when “at rest”; another expert has told him that his bladder problem is an unfathomable one. Not one of these is interested in the idea of “drug interaction problems”, they are not even interested in anything beyond their own specified area. The GP will get the reports, eventually, which will, probably, request prescriptions of different medications for each condition. He is also urging his patient to be seen by the CMHTeam once again, stating that he “knows nothing about these mental health problems”.
Factor all of this with the fact that this particular person is also suffering protracted withdrawal from a variety of prescribed drugs. Is this REALLY the best that the medical world can do to support him?
What we can offer is reassurance that many others suffer in a similar way and that by joining together we can ease each other’s burden. Why is it that GPs cannot see that we could be useful for them? That they could direct their patients towards such a group and help them, without using their limited appointments time nor the never-ending supplying of prescriptions for further drugs which simply escalate the problems.
We shall continue to support but do wish that WE could be slightly better supported ourselves – after all, the doctors are meant to be there to support aren’t they? Where is the sense in talking about deprescribing and therapies in the community if the only ‘therapies’ that they will consider come in the form of tablets and liquids?
“Where is the sense in talking about deprescribing and therapies in the community if the only ‘therapies’ that they will consider come in the form of tablets and liquids?”
It’s very gone wrong indeed.
The white coat to me ideally represents purity, integrity and duty of care.
Although, I am naive to still believe this concept, I still believe that there are a number of extraordinary doctors out there.
I have met them along my journey towards healing.
Mind you, coming across these fine specimens is like finding a pin in the haystack.
Sadly, the nightmares begins when no one believes your story.
The penny dropped this year for me.
I had a few good doctors believe in me.
Indeed, it was very empowering/healing for me to hear those few words: We believe you!
In the past I felt alienated from a system that did not know how to heal me, once the damage had been done.
So the quest for trying to heal begins……………….!
I never thought that I would have my health severely impacted by a cascade of medicines.
I was once delusional and believed that medicines were a gift from the Gods.
That theory went out the door as soon as I realized I had to fight for survival.
It never occurred to me that I had to become a ‘super sleuth’ to get down to the bottom of: what/how/why I was suffering from.
Indeed, when something profoundly impacts your life, you are looking for answers/support/understanding from the professionals in white coats.
The authority figures we look up upon become invisible to us when they have no answers or solutions to heal.
We are treated like some mythical creature that has come from some outlandish universe and are looked down upon as if we have no right to question what has happened to our good health.
I got off the treadmill as soon as I comprehended that no one could help me.
I became invisible in many of the health professionals eyes, in the sense that if I no longer submitted to the requests of tests/procedures that posed further risk to my already compromised health, I would become someone worse off than when I came in.
Grief is a part of life.
Everyone grieves about one thing or another.
When grief is married with trauma it = Post Traumatic Stress Disorder.
You don’t forget the unexpected/horrendous incident because it was an experience that leaves you traumatized for a long time to a traumatic emotional response.
Talking about the incident usually helps.
When one grieves it effects the whole person ~ the mind/spirit/body.
If the grieving or trauma goes on for longer than usual or it impacts the relationships you have with others, it may be diagnosed as abnormal and this is when you have to be concerned about some health professionals who seem invisible about your concerns and emotions.
Once you are put on a treadmill of medicines, it may end up becoming your worst nightmare.
When you then go to experience dramatic/drastic outcomes with your medicines, who is there to really help you.
Yes, the invisible man.
https://www.youtube.com/watch?v=pz7XApRKtH4
Do we need validation from those who have no comprehension of how many medicines impact good health?
The moral of the story is quite simple. We need to find like mind people who see beyond superficiality especially, when Western Medicine sends you on a witch hunt.
Thank you kindly to all who acknowledge/appreciate the dilemmas of those who have been detrimentally impacted by medicines. The incorrect labels are like a permanent tattoo in ones medical records.