Category Archives: Your Story

Tell your story anonymously. Help others identify with, and gain strength from your experiences. Bring hope to others who suffer.

Email: mystory@past.wales

(A selection of some members stories, their experiences with prescription, over the counter (OTC), and online/internet obtained pharmaceutical drugs.)

MJ’s story

Hi my name is MJ and i spoke to a member of your team on facebook messenger the other night , and due to my functional neurological disorder – fnd for short, i have severe speech problems , so i am emailing over a brief summary of whats been going on for me with the NHS and having concerns that my fnd may of been caused by medication, especially after watching your video for your awareness day that was in December 2018

Where do i start , always from a child (i am 44 now) i always had sadness and not quite fitting in and was severely bullied at home and at school , so by the age of 16 i found myself in a abusive relationship and had my first child at 17 by the time i was 20 after the birth of my second child i was on antidepressants not sure which ones they were like red smarties  and over the years following i was on various antidepressants Prozac or Citalopram were the drs favourite ones and to be honest they never did nothing apart from cause massive weight gain and lethargy.

Then in a bout 2003/4 after trying to turn my life around to be healthier and already losing about 7 stone in weight but then coming to a standstill weight wise i heard about these tablets that drs were prescribing called Sibutramine or Reductil , so i asked the dr about these and she put me on the highest dose and i agreed to visit dr regulary as they can cause heart problems , but i was so desperate to lose the weight and fit in (be normal , these days i realise it doesn’t matter your size and everyone has their own level of normal) so i started taking these tablets and wow at last something that worked.

It was like my brain had been rewired in the space of an hour of taking the first one , i could think clearly i had so much energy , it was like “yey something at last that kinda makes me feel normal and fitting in”, needless to say i continued with these tablets for several years, then come 2005/6 when i was coming off the tablets as i found out 12 months should’ve been the maximum time i should’ve been taking them there was stress going on surrounding my daughter and i started getting these attacks which the drs at the time just said it was anxiety attacks that mimicked a stroke which i now know to be fnd and i had many visits to A&E in the early days of the attacks and being doped up on Diazepam and anti depressants , eventually i seen another gp at the surgery and he said it wasnt right and referred me to neurology at Lydney outpatients this was in 2006.

The day i met the neurologist i wasn’t having attacks so i had to rely on explaining to him and he agreed to send me for a MRI of my brain, and a test where they wire your head up and flash lights in your eyes i think its called an EEG, then i went back to Lydney outpatients sometime later for results, i walked into the neurologists room when i was called and the neurologist looking down messing with something not really paying attention muttered actually there is something wrong then looked up and said sorry wrong person.

He had no notes or computers files open in front of him, really at the time i should’ve questioned him but i didn’t as i just thought it must be me again my body over reacting and doing strange things , so I went on my way continuing of going back and forth to gps and mental health services for various anti depressants and therapies , like cbt and counselling, art therapy etc … and tablets over the years ranged from Citalopram to Prozac to Veneflaxine to Mirtazipine , some in liquid form some tablets these spanned over many years.

I soon learnt what mostly the triggers were for these attacks it seemed anything that would raise my heart rate , so things like stress , exercise , etc… so I just tried to avoid these these things as much as I could but sometimes the attacks would happen for no reason at all , also over the years I sought private therapy through NLP, EFT, plus I socialised through spiritual groups and learning techniques like meditation and other forms of healing the therapies all helped me one way or another but never made a difference to attacks.

In 2008 I saw my gp again about my weight as it was creeping back on, and she referred me for a gastric band which I had placed in 2010 , which was helping manage weight etc… then in 2013 I became very unwell with the band I won’t go into the gory details but after not being able to eat or drink for 3 months the drs decided to refer me back to the ones who fitted the band , and the drs gave me Lanseroprazole which helped to keep down very small amounts of soft food like runny mash or watery ready break , and the people at south mead who originally fitted it did a swallow X-ray and it turned out my stomach had pushed through the band , so I was given the option of having it corrected or removed , so I agreed to have it corrected as at the time I really didn’t want to be without it.

Apparently when it was corrected there was several hernias and loads of ulcers in or around my stomach , I was told it would never be able to be tightened again but that was ok as at the time as it was like a security blanket for me what with my ongoing issues with weight, so life moved on and in about 2014/15 I saw a neurologist again as I had been back to gp so fed up of attacks and really beginning to question the anxiety thing especially as I had worked hard with loads of therapies and adopting a spiritual attitude to life and having a good social life with some really good friends who accepted me for me.

I saw a different neurologist and he wanted to try and witness an attack so he called a nurse into the room and asked me to undress to my underwear and tested my reflexes etc by this time I was pretty nervous so I began to shake a bit , so he thought that was an attack and said it was a functional movement disorder and gave me a web address to look at he ordered some bloods to be done , several months later I still hadn’t heard nothing so I rang up about bloods and the secretary said they were clear , so I continued plodding on life the best I could finding part time work etc… more tablets from the drs etc…

In 2016 I had the band removed as problems were beginning to occur again and I had just come to the conclusion I would rather be fat and happy than put my body through anymore torture plus the stress on my family In 2017 things started going downhill fast , the attacks were getting more frequent and more random.

Then in March the Friday before mother’s day so I wasn’t stressed and I was looking forward to being pampered and a day off from cooking and housework etc… as I have now got 5 children , I had an attack in the evening that basically hadn’t stopped yet 2 years on , so when it started I kept telling myself it would pass and made visits to out of hour gps who gave me beta blockers which done no good so I stopped them and my regular gp gave me Lorazepam and Zopliclone which really altered my thoughts and mood and by April I took a massive overdose of them which I am ashamed of but my mind was so scrambled and I was so off my face on them but not making no difference to the ongoing attack.

A group of mental health people visited my home on the following Monday which I now know was a assessment but wasn’t told at the time or received any copies of assessments but I will go more into that later as a lot has came to light about that more recently.

By May I had an appointment with the neurologist called Dr M__ S______ and before me and my partner had chance to sit down she blurted out your in a violent relationship aren’t you which is not true yes over 20 years ago I was but the man I am with now is such a good man , I tried to explain to her with my speech problems that this was not true , she just looked at my partner and said well you better not be , she did some standard neurological tests like reflexes although very difficult due to my movement and all over tremors and agreed to have me in as a inpatient ASAP for assessments and tests etc …and she prescribed pregabalin but after a week or so of taking it I recognised the feelings I had previously from meds that I stopped them and in a couple of days although still feeling awful the real horrible feelings went away.

In June I was called on a Friday night and asked if I could come in straight away as a bed had come free , so I did as the attack was still ongoing and really getting me down , it wasn’t a good experience at all , especially due to my speech problems , I even had a nurse taking the mickey out of my speech , the beds were set up weird and I wasn’t allowed to pull the curtains around me for privacy , I saw a physio once or twice and a health phsycologist once , Dr S______ saw me once or twice and one day she brought a colleague around with her with some student drs , he got me to do some things that I found really difficult like raise arms , then he said fnd we get a video done for dr S____ to go through with you to show you it’s fnd , then one of the students said to him how do you know it’s fnd and he grabbed my head and I started to feel electric shocks all through my body and making this weird humming buzzing noise then all of the drs went off to chat and go onto next patient , so great he started a new symptom of vile electric shocks in my body which I get daily now along with everything else.

So I was discharged and invited back the following week for the video to be made , the following week my partner booked yet another day off work and took me up for the video , we was left waiting for hours as somebody had cancelled it but eventually they got the video people to come over , they got me to sign a folded over peice of paper supposedly to say it was not for public use but I do question that now , the video was done which I found very stressful due to not being able to communicate and feeling unheard at one stage he rubbed his hand on my spine and I flinched with pain and he said in a loud voice for the camera oh I’m sorry that tickled I was so glad when it was over it was so humiliating, a few weeks later I had a appointment with Dr S___ , so again another day off for my partner but we thought we was going to go through video , but it wasn’t , it was more or less a discharge appointment.

My partner asked about the video and she was very awkward about it and said oh yes definitely fnd and quickly changed the subject  , so god know what happened to that video , so great discharged or so I thought I felt so alone so I turned to the internet and researched fnd and found someone talking about the Rosa Burden centre in Bristol and how they specialised in fnd , so I emailed Dr S____ through pals to ask wether she could refer me and she did ,so in the August I met Dr E__ M___ a neurologist from the Rosa burden centre and by the beginning of September I was a inpatient there on a four week rehab programme ,

I had some speech therapy there and physio and to input it was good there and great improvement was made there , towards the end you are set a task to walk to local Lidl ( about a 10 minute walk for average person ) but when I did it , it took me nearly 3hours as all symptoms returned but I managed to get back and just sit in a vegetive state for some hours after and pull myself out of it , so upon leaving they advised me to get a self referral for CBT, so I did even though it didn’t help things before , within weeks all of my symptoms were back worse and by the November I had to purchase a wheelchair for outings and by the February 2018 I was fully mute.

I went to gp who sent me to A&E but I ended up leaving because the one Dr was so rude and shouting at me , my partner had to step in and tell him to pack it up , but by this time I was so distressed I just got my partner to get my wheelchair to take me home , and the Dr on the way out said quite sarcastically yes go to Bristol they will sort you they are much better , why he said that I don’t know there was no need of his attitude , anyway I went to se Dr M___ a few weeks later for a outpatient review ,and she did her best to get me speech therapy locally and she reassured me not to worry or blame myself relapse is common in fnd , so by April/May 18 someone from mental health visited and realised I was mute so they then had to think as talking therapy wasn’t going to obviously work , so when they went I emailed them and asked if a psychiatrist could see me as I just had gotten to the point where I think I had gone nuts , so off to a psychiatrist I was referred I met him 3 or 4 times each time he was very rude and very impatient with my speech difficulties and just kept on wanting to give me tablets the first lot was Sertraline well I didn’t even collect prescription and the next time it was a very high dose of Prozac

I collected the prescription but never took them as he said to me in the appointment if I didn’t have tablets there was nothing he could do even though I was explains that meds were having a negative effect on me even paracetamol or anti histamines have a negative impact these days , so the next appointment that was like 6 minutes long he wasn’t happy because I wasn’t taking tablets and he referred me to psycologist L__ M___, I met her several times and she seemed to get it until I received a report in the post where she had written that my man had committed suicide , which when I emailed her to ask her where this had come from as it was distressing to read and not true she wrote back to me saying she got it wrong it was my grandad which again was not true , she wished me all the best for the future in the letter and that was the last I heard from her.

In that time as well I seen the speech therapist who was stumped after 5 sessions what to do, and Dr S___ had sent a random appointment so I went even though I thought I was discharged from her even though i was a lot worse and fully mute she didn’t seem bothered or even examine me and I ended up in tears by the end of the appointment and all she said to my son who had accompanied me was it does them good to let it out and patted me on the back.

When the report came through the lies that was wrote in there I just broke down blaming myself again , so a few more waste of time gp appointments etc … after but I won’t go into all of it as I can appreciate I’ve gone on loads already.

February 2019 I had another appointment with Dr M___ who has now discharged me , and I’m stuck at home housebound , more or less mute and tons of other symptoms , feeling very lost and alone and not knowing where to turn.

It’s surprising how much we take things like talking for granted but when it goes you soon realise what an important function it is , I just don’t understand why I’ve been lied about ? Diagnosis have been made on my past traumas in life are things being covered up especially as my symptoms now match MS or Parkinson’s or other neurological conditions but no recent scans have been done to rule them out ?

How can they waste NHS money on prescriptions and so called therapies when a true diagnosis has not been made ? Because the way I see it how can you begin to fix something if you don’t know what is wrong as fnd is just a umbrella diagnosis and the leading specialists in fnd say it is unusual for fnd to be the soul problem.

Did the years of antidepressants and those diet pills mess my brain signals up ? Especially as Reductil was designed to surpress the appetite through messing with the brain signals , I tried to help the health professionals the best I could by typing up everything prior to an appointment as I can appreciate it was hard for them with my speech problems and the last thing I ever wanted to be was a nuisance or a burden.

Thank you for taking the time to read this there’s probably loads more I could’ve added but I can appreciate this is loads already and I would really appreciate any support or advice you could offer many thanks MJ. 

J.J.’s story

4 years is nothing. 4 years is a black spot on a clean canvas that you can only really see if you step over those red rope barriers in museums that stop you from getting too close. But 4 years of depression and anxiety left my life paralyzed from the early teens onwards. It came in waves, waves of not being able to leave my bed, wishing I was dead, crying until my eyes were burning and my brain felt like it was under a hydraulic press.

Being 15 – noting that I’m 16 now – my mother was desperate. She was frustrated, blaming herself, my father, mostly just me, though. I couldn’t face going to school, so I missed most of the high school experience, I couldn’t even leave my room most days.

We tried aromatherapy. I had candles and drank herbal mixtures and dropped two drops of flower water onto my tongue a day. I had mouth sprays and scent sticks and special herbal chewing gum. That didn’t work so well.

We tried tapping, sort of like massage therapy. I’d tap areas of my body and tell it I will go to school tomorrow. I didn’t.

We tried therapy. My mother took me to a counsellor named Mindy who made me cinnamon tea. Later, I saw an Anne who let me play with the fidget toys she had in a box in the corner. Then I got to the top of the CAMHS waiting list and I saw a Sandra who brought in aromatic play-dough to make me feel more relaxed. Then I got to an Adrienne, who had a fun accent. After her came Linda, who said ‘breasts’ too much.

Then I got Dr Tom.
I’d done CBT – it hadn’t helped. I was missing my GCSEs due to anxiety – I was thrown deeper into depression. My relationship with my mother was angry yells and her being disappointed in me every time she saw me (or, that’s what it felt like to a 15-year-old).

I couldn’t live like this anymore.
Dr Tom explained, in much detail, that medication – Fluoxetine, 20mg – was a last-ditch effort to try to keep my 4 years of misery from becoming 5.

I’d had friends who’d benefitted from taking medication, so when I wasn’t opposed to the idea, my mother agreed. Desperate times and all that.

Dr Tom had explained the side effects to me, and how if they surpassed the two-week mark, I was to call his office immediately. Dizziness, nausea, suicidal thoughts. I was willing.

The first few days, I was dizzy. My head felt heavy and I felt like I was floating. No nausea, no suicidal thoughts.

A week later, I did get a dark cloud over my head. It didn’t last long, but it was there.

A week later, I’d tidied my room. The first time in months.

A month later, I looked up courses in local colleges. I didn’t cry about missing my GCSEs.

6 months later, I set up a board of aspirations and was slowly ticking them off.

A year later, I bought a pet budgie, whom I look after. That’s a lot of responsibility for someone who couldn’t look after themselves last year.

When the time came to come off of my meds, I had no side effects. I was living. I was alive. I had plans, I didn’t look around and hate where I was in life. I was something. Not nothing. 4 years of dark at the end of the tunnel, and suddenly there was light. And it wasn’t a train coming right at me this time, I’d actually found the end of the tunnel!
I’ve been off Prozac for a few months by now. I dyed my hair the other day and laughed when it didn’t come out the way I wanted it to.

When I was 13, if my hair wasn’t right, my anxiety would have me missing days of school to cry on my bedroom floor. My bird, Archie, is my best bud, and likes to sit on my shoulder. I volunteer at an animal rescue and walk the dogs. I used to cross the street when one was coming towards me. I want to learn sign language. I’m going to a concert next year. I go to a drama club. I take the train. I read books. I spend time with my friends. I smile at strangers. I’m not angry anymore.

Prescription drugs can be awful. It can turn something bad into something worse and make someone scared into someone scary.
But I’d been scared for so long.
And I’m not anymore. I’m unsure that I ever will be again.
Whatever prescription drugs are to you, I wish you luck, and remind you there is hope.
cool. peace.

My Life On Antidepressants

Model and writer Sydney Lima had hoped antidepressants would relieve her anxiety, but the reality was somewhat different. Here, she tells Vogue of her experience, and why so many people struggle both on and coming off antidepressants.

telling him I wanted to die. Convulsing through panic attacks, he found me hiding down the back of an alley, trying to keep out of sight. I hadn’t felt “good” in a long time and had hit the peak of a snowballing problem with anxiety. I was drinking a lot, unable to hold down any job due to a sporadic approach to attendance, the only consistency in my life being a maxed-out overdraft.

When I no longer felt I could laugh off the devastation around me, I tried to explain the all-encompassing fear I had been experiencing to a friend, responding to a “Wubu2” with a “TBH bit anxious ATM”. She replied: “Just go to the doctor, I had exam anxiety and they gave me some Citalopram. It really helps.”

Citalopram is one of a group of relatively new forms of antidepressant, collectively known as SSRIs or selective serotonin re-uptake inhibitors. They are most commonly prescribed to treat depression and anxiety disorders and work by increasing levels of the brain chemical serotonin, which is thought to affect mood and social behaviour.

The ease in which my friend had received SSRIs for short-term exam anxiety shocked me. Five years previously, after having my depression assessed, answering yes or no to a flimsy list of questions, my GP concluded I suffered from moderate depression, but no drugs were offered…..

Full story http://www.vogue.co.uk/article/antidepressants-side-effects-withdrawal-symptoms

A Life Lost to Prescription Drugs

I live in Scotland and am a campaigner for Government action on prescribed drug dependence, withdrawal and resulting iatrogenic harms. I am in bed most of the time. I tell my story in the hope that it might help others understand what may be happening to them and to help them avoid the many mistakes I have made and the awful price I have paid for trusting the medical profession.

I was born in 1954. I was an extremely sensitive child and a great worrier. I had some years of childhood illnesses and in my teenage years I started to get depressed. Problems at home, high achiever at school and worries about body image all combined to make me deeply unhappy. My mum suffered from depression and this affected me greatly. By age 20 I had started having myoclonic jerks (possibly caused by stress) and for these I was prescribed the benzodiazepine, Nitrazepam. There were no patient information leaflets in those days so I knew nothing about the drug. As soon as I started taking the drug I became extremely hyperactive, almost stopped eating and within two months had lost a quarter of my body weight. I was pleased, I had never had much energy and I hated being too fat. My mother was horrified. I then tried to take my own life, swallowing the bottle of tablets, thinking I would never waken up again. It was a desperate action and i had no thought whatsoever as to the effect on my family, I just wanted to die. I had no idea what was wrong with me. My life was in tatters and I was referred to psychiatry.

In those days, medication was not the first option and I went to group therapy and individual therapy but nothing helped. I continued to be extremely suicidal. I do not remember there being any waiting lists and hospital beds seemed readily available. The hospitals were large, and the wards the same, I was so depressed I didn’t care. At one point I was told I would spend the rest of my life in hospital as happened in those days. At no point did any doctor realise that I had had an adverse reaction to Nitrazepam and I certainly had no idea. After a few years I was put on antidepressants, at first the old tricyclics. Anafranil caused epileptic fits but Doxepin I could tolerate. However, my mental health continued to deteriorate and there were many more suicide attempts and many more hospital admissions. I was barely functional. I married a fellow patent who was functioning better than me. However, the stress of his illness on me was too much to bear and after 10 years we divorced.

I gradually learned all about the immense risks associated with benzodiazepines but I still had absolutely no idea how much the drug was affecting me. In my 30s and 40s things gradually got somewhat better. I continued on the drugs, Nitrazepam and various antidepressants, moving to SSRIs. Again there were many I could not tolerate but eventually settled on Effexor from 2000 onwards. Every day of my life was a huge struggle, my physical and cognitive functioning were impaired but I did not know it was the Nitrazepam. It was now firmly ingrained in my mind that I suffered from depression and that this depression was intractable. I believed it was the result of genetics and biochemistry or maybe it was just me. Psychiatry did not disagree. My grandfather had taken his own life, my mother had been depressed for many years. Despite the daily struggles, I went back to University and had a fairly good research career in the NHS for about 20 years. I gradually grew in confidence and was promoted several times. However, I felt alone and lonely every single day, having absolutely no idea that this was indeed a side effect of the Nitrazepam. I thought it was depression, I attributed everything to depression, it had become ingrained in my mind.

After retiring from work in 2012, I changed GP practice and was advised to stop taking Nitrazepam. I was given no tapering advice. I therefore tapered on my own over three months in 2013. I had only been on 5 mg and that seemed reasonable to me. Functioning became even more difficult but again I failed to link this to drug withdrawal. Six months passed following the end of my taper before I became acutely unwell and bedridden. I cannot begin to describe the torture that I then endured for several years. My brain had stopped communicating properly with my body, and most of my body was numb. My legs and arms were worst affected and movement was difficult. I felt as though I was dying and had no idea the feeling was emanating from my brain. For three months I saw no-one and I could not seek medical help. I could not stand light or sound, could not use the telephone, could barely stand for more than a few minutes. Only managed to get to the toilet and get something to eat which was a huge struggle. Depersonalisation and derealisation were terrible. Memory was shot to pieces, had little awareness of the passage of time. I slept a great deal.

Early in 2014, I started visiting doctors. GPs did not know what was wrong. Psychiatrist who knew me well said it was nothing to do with the drugs and to “think of it as chronic fatigue syndrome”. I knew he was lying. I did not see a doctor again for three years. I was too ill to visit the surgery and in any case they seemed to have no idea or they did not want to know. I remained bedridden for the most part. It was 18 months before I could sit up without pillows propping up my head, My body was wracked with nerve pain. It was two years before I walked outside on my own. Early in 2017, I tried to force myself to walk. The pressure on my brain was such that I experienced two massive jolts, one at the front of my brain and another at the back. The pressure caused my left eye to bleed and my eyesight is now damaged. I now needed a walking frame and wheelchair when outside the house. In 2014, I decided to taper off 225 mg Effexor over 10 months, as I now realised that most of my symptoms of depression were side effects of Nitrazepam. I did this without medical advice. I do not know if this has prolonged my withdrawal symptoms from Nitrazepam. No new symptoms emerged as a result of tapering Effexor but I was very ill and would not have noticed minor changes.

In 2017, I consulted a neurologist privately who said my horrendous ordeal was nothing to do with the drugs. He was lying. Later in the year, I saw an NHS neurologist and he admitted that all my symptoms were due to the shock of coming off Nitrazepam but his letter stated that I had been suffering from chronic fatigue syndrome and now had neurological functional disorder. I was adamant I wanted an accurate diagnosis linking my symptoms to the drug. I requested an out of region referral to Prof David Healy in Wales. Instead I was referred to the local Substance Misuse Service. There, I received a full and frank acknowledgement that my symptoms were indeed entirely consistent with protracted benzodiazepine withdrawal syndrome, though I much prefer the term benzodiazepine related brain injury, for that is what it is. I have fought long and hard for this and it should never have been necessary. I have known since April 2014 what was wrong with me and so have my doctors. My only sources of support have been benzobuddies.org and Beating Benzos Facebook group plus my ever supportive friends and family. I would not wish my ordeal on anyone. I hope that others may learn from the way my life has been blighted from the age of 20, because I was trusting of medical advice.

My website outlines my story in more detail and I blog regularly on the ongoing campaign on prescribed drug dependence. https://nevertrustadoctor.wordpress.com

L’s Story

I would like to share my story, in order to highlight the harm that I believe is caused by SSRI and SNRI antidepressants.

In 2008 I suffered the horrendous experience of a depressive psychosis. It was diagnosed by psychiatry as “postnatal psychosis”. I now have a strong suspicion that my psychosis was caused by an SSRI and an SNRI.

My first daughter was born in April 2008. I took citalopram at a steady dose for about 2 years prior to the birth and throughout my pregnancy. In the days after she was born, I read that sertraline was the safest SSRI to take while breastfeeding. I asked the GP about it and she changed me from citalopram to sertraline. In the following weeks I became very depressed. I was changed back to citalopram and the dose was increased. In the weeks following this I became suicidally depressed and developed a florid depressive psychosis. I made several suicide attempts and was sectioned. I continued on citalopram and olanzapine was added. I did not respond quickly to the meds so was given ECT. I had a fairly rapid improvement following ECT and was allowed home. However, after a few months my depressive psychosis returned. I was changed to venlafaxine and quetiapine and after 3 months the depressive psychosis lifted and I remained well until two years after the birth of my second daughter in 2012. I was advised to take quetiapine for some months after this birth. I remained well for 2 years, however, when no longer on quetiapine, I had another episode of depressive psychosis. I remained on venlafaxine but this time quetiapine was not effective. My antipsychotic was changed to amisulpride and after 3 months I recovered. I have remained on a low dose of amisulpride and have not experienced psychosis since then. I now wonder about the possibility that I have a sensitivity to SSRIs/SNRIs and that my episodes of psychosis were actually caused by citalopram/venlafaxine and that the psychosis was only subdued by the addition of an antipsychotic.

I was told on a number of occasions by the psychiatry team that my illness was “atypical”. I do not remember any of the psychiatry team ever mentioning the possibility that my depressive psychosis may have been caused by the SSRI or SNRI – it was always attributed to an underlying illness – “postnatal psychosis” or “psychotic depression”. This has led me to wonder how many other cases of worsened depression and psychosis may be influenced by these drugs, which is why I want to highlight the issue. If psychiatry is not considering this possibility, this potential cause will not be being reported and it could be going unnoticed, meaning it is possible that, like me, some people are advised to continue on the drugs that precipitated their illness in the first place, with further drugs being added to counteract the negative effects of the SSRI/SNRI.

I would also like to highlight the problems I have had attempting to withdraw from venlafaxine. In discussion with my psychiatrist, I decided to come off venlafaxine in 2015, having been well for over 2 years. My psychiatrist recommended a taper which I now believe was way too fast – over several weeks. The withdrawal during those weeks was a truly awful experience. For the whole period of withdrawal and several weeks afterwards, I felt like I had a severe bout of the flu and a terrible hangover. I had electric shock sensations in my head. It felt as if my brain was being constantly irritated by a chemical. I felt agitated and intensely irritable. I felt an intense burning sensation in my head, spine and oesophagus. My body ached all over. I had abdominal pain. I lost my senses of taste and smell. Then approximately 3 months after stopping venlafaxine, I became depressed. I completely lost my appetite and felt a physical sensation of my body and mind being an empty shell, unlike anything I had ever experienced. I was admitted to a psychiatric unit. My bowel stopped working. I was put back on venlafaxine and after approximately 4 months I fairly suddenly started to feel better again. The physical symptoms disappeared. The psychiatry team were convinced the whole episode was caused by my underlying illness – “psychotic depression”, because my depression could not be controlled without venlafaxine. However, I strongly suspect that what I experienced was a very bad case of withdrawal from venlafaxine.

Recently I decided I would like to try to withdraw from venlafaxine again, but this time much, much more slowly. I found a Facebook group dedicated to venlafaxine withdrawal. It has approximately 3800 members. Time and time again people report that they were not warned about the difficulties that many people have withdrawing from venlafaxine – indeed most medical professionals seem completely unaware of the problem that so many of us experience. The recommended taper advised in the group is a maximum of 10% of the dose at a time, with a hold of at least 30 days or until all withdrawal symptoms have resolved, before tapering again. For many of us, particularly those of us who have been taking it for a number of years, it would seem that to have the best chance of getting off venlafaxine and staying well we must reduce the dose very gradually over years. There are members of the group who, like me, came off much more quickly on the advice of their psychiatrist/GP, did not reinstate the drug quickly enough and who have suffered a protracted withdrawal over years, with a whole host of symptoms. I can’t help but feel that if there could be a much greater understanding of antidepressant withdrawal amongst medical professionals, including revised guidelines for withdrawal in the community, then more of us would receive the support we need to come off venlafaxine and other psychiatric drugs, rather than suffering intense withdrawal symptoms and being told that they are nothing to do with withdrawal but are the return of our original illness.

I find it very interesting in relation to my suspicion that I experienced SSRI induced psychosis that, since reducing my venlafaxine dose from 150mg to 100mg, my thoughts seem less distorted and obsessive, I have less anxiety and my thinking is much clearer.

Thank you for taking the time to read my story.

L… G….

MJG’s experience

I started taking Klonopin 15 years ago for anxiety which I’ve had all my life. After taking multiple other medications that didn’t work for very long or they caused more anxiety I thought I had finally found the answer in Klonopin. At one time I was up to 3mg a day, this was many years ago and I got myself down to 1.5mg which worked well for about 9 years then it started causing anxiety attacks and constantly crying.

I had a doctor label me as benzo dependent which made me furious. To me he was saying I’m a drug addict. After a lot of thought I realized I am dependent on this! So I started my journey tapering off. At first I was cutting my pills, things seemed ok for a week or two until the withdrawals began. My body temperature isn’t regulated, I’m constantly sweating or freezing. My thoughts are all over the place and I can’t remember anything half the time. I have muscle cramps, heart palpitations, headaches, stomach pain, sleep to much or none at all. I wake up on a panic since my cortisol level is all over the place.

My brain and body are trying to heal from Klonopin leaving me feeling absolutely insane half the time. On good days I can function and feel great other days I can’t do anything but pace. My vision is blurred and I can’t tell how far things are so my perception is also messed up. I have vertigo causing the world to move around me but I’m still which makes me nauseous. This makes driving and even walking very hard. My ears ring so loud I can’t hear anything but the buzzing noise in my head so I have the tv or radio on at all times just to try to drowned out the buzzing but noise is like a ice pick to my brain. Some days I get a glimpse of myself and that keeps me going other days I don’t know who I am. I have fits of rage and I know that’s not me it’s just my brain trying to figure things out. I’m not done tapering yet I still have .26mg to go. Nobody understands if they haven’t been through this so I’m very thankful for the online support group I joined. Doctors don’t realize the horror of coming off klonopin so like many I’m doing this on my own.

I’ve been to the doctor many times for physical issues and after tests it’s proven I’m fine so I keep pushing along to get off this horrible medication. I don’t understand how a medication that can cause so much pain and distress can be prescribed! Especially long term. There are no real support groups for this and it’s much needed. Problem is many of us can’t leave the house but I’m sure a virtual session would be packed with people looking for help and answers.

TMR’s journal entry

Trigger…

My journal entry today:

Now I’m losing it. Huge fight with my SO last night. WD is messing me up so bad. I can’t function at an type of normal level. Getting worse by the day. Going crazy. I need out of here where there’s nobody so that I won’t have anyone to verbally attack during horrifying fits of rage. I need help desperately. I don’t know what or where to get it from. Crying crying crying. So upset. If this is how it’s going to be, I don’t want it. I can’t do another year or two or three of this.

Why is this so hard? I’m killing relationships with everyone around me and I can’t seem to stop. I want out. I didn’t sign up to get my life ruined. Is it this bad for everyone else? The anger has taken over my life. And now I’m losing my relationship with my SO. Because of me. My mind is not right. Falling apart at the seams.

The suffering is unbearable a this point. I want to give up and escape from the torture in my head. Derealization is unbelievable and unbearable. I need to escape from myself. I’m not me anymore. Tina does not exist anymore. Someone else has taken my place. My mind is cracking. Splitting. Desperately need some support.

My Story

Having kicked an addiction to alcohol and cannabis I had begun to suffer crippling arthritis. My GP advised and prescribed maximum strength Ibuprofen and Co-Codamol. For months I took these, barely giving any relief at all for my condition but I began to enjoy the effects of co-codamol.

Although I had learnt a lot about addiction, had become very aware – but nothing, or anyone had taught me about the acute addiction possible on prescription drugs.

Codeine which I since learnt was an opiate, a morphine when it hit my body. I would also top up with Nurofen plus containing 12.8% codeine!

Months went by, repeat prescription after repeat prescription, awaiting a rheumatology consultancy appointment. I felt myself becoming dependent. When I began to read and research I became scared and sought help. I couldn’t find any independent information, I couldn’t talk to my GP or the health service for fear of losing the painkillers.

This is where P.A.S.T. came in – mutual support from others like me were concerned about their prescription drug usage.

I, and others like me, people and professionals actively helping others gain awareness, support, and knowledge of their prescription useage.