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.
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.
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.
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.
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.
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.