Editorial Note: This post by Stevie Lewis raises a very tricky area. There is no doubt that SSRIs cause movement disorders and not just temporary disorders but permanent problems like atypical Motor Neurone Disorder (ALS), Steele-Richardson Syndrome, Osmotic Demyelination Sydrome (Pontine Myelinolysis) and Multiple System Atrophy. There is also little doubt that most neurologists have a blind spot for these problems – which is bizarre.
Various aspects of the roller coaster ride which is protracted SSRI withdrawal have been concentrated on at different times by different campaigners; akathisia, suicide, PSSD. I want to flag up another part of the jigsaw puzzle which doesn’t receive much attention – SSRI induced movement disorders. You are going to read a bit about my movement disorder, and about Sharron’s and K’s. You will also see short videos of me and Sharron losing control of our bodies.
Sharron, K and I would like you to share this post and encourage feedback from anyone you know who is an “expert” on the subject:
Both Sharron and K are still in the acute phase of their journey and need any help and advice that can be given.
My first movement disorder episode occurred in November 2009. Some time in 2010 I did my first Internet search on movement disorders. Interestingly, when I put in the same search criteria today “SSRI induced movement disorders”, three of the same papers that I read at the time have come straight up. Which leads me to believe that not a lot of research has subsequently been done on the subject. Here are those three;
The writer in the third publication thinks: “Recognizing akathisia is important because it can be very bothersome”. Only a dispassionate scientist could put the words “bothersome” and “suicide ideation” in the same sentence.
One reason the incidences of SSRI movement disorders are hard to track down is due to the fact that they are also known in the business as Extrapyramidal Reactions (EPRs). This more recent research (2015) concludes: “Case reports associating serotonergic antidepressants with EPRs continue to be published. Practitioners are advised that monitoring for such is important. Rigorous research efforts are needed to better understand the clinical risk factors for these adverse drug reactions.” Hawthorne and Caley 2015
It is clear that SSRIs cause movement disorders, if you look in the right places. Equally it is clear that SSRIs cause withdrawal if you look in the right places, but we know from experience that those who prescribe them are shielded by the system from seeing such reports. Drug companies, medical journals and medical guidelines have made sure of that.
However, the movement disorder that Sharron, K and I have doesn’t match any described in articles or research on the subject. We don’t seem to have akathisia, dystonia, dyskinesia, tardive or otherwise, myoclonus or tics.
My movement disorder came out of the blue. I had been taking Seroxat for just over 12 years, and I had tried and failed many times to withdraw with worsening symptoms each time. In January 2009 I started on alendronic acid for osteoporosis. In September 2009 I took 3 metoclopramide tablets. The first episode was two months later.
The movement disorder starts with a trigger, my muscles tense and tighten and I start to feel afraid. Then my body doubles up and I lose control as my core muscles and pelvic and buttock muscles jerk violently. I am continually flooded with waves of fear. Afterwards I feel in shock, and my gut responds with extreme diarrhoea. I lost a lot of weight in a short amount of time.
You can see the movements here – Stevie Lewis
Whilst writing this article I found something I had written 10 years ago. I had drawn lightening strikes all over the page. That is what an episode feels like – constant physical bolts and shocks. It is an entirely physical experience.
In 2013 I decided I had to stop taking Seroxat whatever the withdrawal consequences in the hope that if I did, the movement disorder would eventually go. In the early days and during the worst years of my withdrawal, the trigger for an episode could be movement (walking, bending, stretching), something I ate or drank, something I smelt or saw or unexpectedly heard, and usually as I was dropping off to sleep. I was routinely jerked and jolted awake and I hardly slept. I can’t give a set amount of time for the length of a jerking episode. The longest was 7 hours, the shortest 30 seconds and the rest anywhere in between. Today I am very fortunate that I jerk rarely and if I do it is related to movement or something I swallow. Medication or supplements are still a trigger.
I have seen 3 neurologists over 5 different visits and ended up with diagnoses of Extrapyramidal Symptoms (EPS), “stress”, Medically Unexplained Symptoms (MUS), Functional Neurological Disorder (FND) and “anxiety”.
From the many stories I have read and my own experience, where neurology is involved the patient’s experience worsens. Not because they throw additional drugs at the problem, but because they seem wilfully blind to the role that the antidepressant, or any psychiatric drugs may have played in the symptoms presented to them. The finger is pointed at the person rather than the ingestion of a chemical. You can imagine them having no problem saying “It’s the heroin you’ve been injecting”.
The third neurologist I saw, when I asked him if he thought that long term use of Seroxat was causing my movement disorder, said “I don’t know about those drugs, it’s psychiatry that knows about them”. Really? Someone whose specialism is the nervous system claims not to know about a drug whose intended function is to alter it?
I think it is time that neurology stepped up to the plate and openly acknowledged the number of patients they now see who have developed functional neurological disorders after taking antidepressant drugs. And I think it is important to point out here that, as many people who are prescribed an antidepressant end up on other drugs which are thrown at the many side effects and withdrawal effects that arise, neurology must be regularly seeing patients with what can best be described as chemical toxicity. Which I suspect goes unacknowledged.
Sharron’s story is next. My claim that our movement disorders seem identical is based on meeting her, watching her body jerk and holding her as she went through an episode.
I was prescribed Sertraline for ‘low mood’ in 2013 by a psychiatric nurse prescriber from our local Mental Health team. My first prescription was for 50mg of Sertraline and diazepam. The diazepam was for two weeks to settle me into the Sertraline. Over the coming weeks because I felt no better, my prescription for Sertraline was increased to 150mg. Which I continued to take for six years.
My prescription for Sertraline was often given with Omeprazole over the six years. I later developed gut problems which caused prolonged vomiting and often saw me in A & E. During these bouts of vomiting I was given various drugs to rehydrate and stop the vomiting. They finally settled on Ondansetron, the only medication that would stop the vomiting.
Whilst on holiday in Mexico I started vomiting again and was taken to hospital where I was given Dexamethasone, Ondansetron, Zyprexa, Metoclopramide, Ketoralac and Pantoprazloe. On my return home various tests, CT scans, X-rays showed nothing that would cause the vomiting. Months later I concluded Sertraline was causing my problems, so after six years of taking it, I decided to stop. I was unaware of tapering schedules and stopped suddenly.
Within days I developed numbness and tingling in my hands and my body began to twitch and shake. Some weeks after this began my GP decided I should see a neurologist. My GP was adamant withdrawal from the Sertraline was not the cause of my shaking and jerking, saying symptoms of withdrawal usually last only a few weeks.
My GP wrote to a psychiatrist on my behalf to ask if it was possible that my problems were due to Sertraline withdrawal. The reply was No, it was more likely to be my gut causing problems and maybe I should see a gastrointestinal specialist. I was diagnosed with dyspepsia, no known cause. My appointment with a neurologist concluded I had FND. He was certain it was nothing to do with my sudden withdrawal from Sertraline. My MRI of my neck and brain showed no problems. I felt very strongly that FND was not the problem and that I was not being listened to.
My gut problems continued after I stopped Sertraline. But in a different way. I had no appetite. The smell of food would start me shaking and my shoulders jerking. When I could eat, I would often start shaking and vomit. This did improve over several months and I was able to eat without vomiting and shaking. The shaking and jerking continued, for months it was a daily occurrence. I struggled to find triggers. In total I have lost 5 stone.
It starts with my buttocks tensing up, I can feel it work its way up my body. Everything tightens up, my arms go rigid, my hands and fingers became distorted, my neck and shoulders tighten, and then like a sudden release, I shake and jerk violently. Often, when the violent jerking stops, I continue to shake. The shaking often goes on for hours and often leads to more of the tense jerking. During these episodes, I experience extreme fear, terror, panic everything becomes loud and I want to get up and run. I start to cry/sob as my body slowly relaxes again.
You can see Sharron’s movements here – Sharron
For the past year I have struggled with sleep. On occasions my body will tense up and I jerk myself awake. The fear and terror this brings with it is enough to keep me awake along with a tremor/shiver, which is more like something you experience when you are cold rather than the jerking. This tremor/shiver is external and internal and includes palpitations and heart flutterings. I have since found the cold, pain, sudden noise, or a sudden movement can bring it on. I also have episodes where I cannot pinpoint it to anything.
One year on, I still suffer with the movement disorder. The extreme episodes are more spaced out and not happening as often. But I do not know from day to day how I will be. The longest gap between episodes is about three weeks. During that time, I had sudden jerks, my body tensed but then relaxed without going into full jerking and shaking. A year on and I feel abandoned by the medical profession. I have been told repeatedly its nothing to do with Sertraline. My life has changed beyond recognition. I am unable to do the job I loved. I battle daily with the frustration, loss and emotions any sudden illness/disability would bring.”
K approached me via social media having read my story and seen my and Sharron’s videos.
My name is K and I am 51 years old. I went to see my doctor for help sleeping when my work schedule changed. He prescribed Xanax .25 mg at night once in a while a few times a month. I never had any problem with that but then he added in paroxetine (Paxil/ Seroxat) without any reason. I took it for five years as prescribed by my doctor.
Three months after stopping I developed a movement disorder which is still getting worse after two years off the drug. It happens all day and into the night so I can’t sleep longer than 1 hour because of my whole body jolting and jerking so much with waves of fear. The symptoms calm down and then come back up in a matter of minutes or hours. The movement disorder that I have is very like Stevie and Sharron’s – I have seen both their videos and that is what prompted me to get in touch with Stevie.
Five months after stopping paroxetine I voluntarily admitted myself to rehab due to psychosis, and because I couldn’t control my body and mind anymore.
I went to see a movement disorder specialist; he didn’t know what was wrong with me and I was told to go back on the paroxetine. I made multiple trips to ER and they and the mental hospital treated me like a drug addict and made me feel like I was overreacting.
When my symptoms from withdrawal were so severe I was told the movement disorder look like Parkinsons. They put me on so many antipsychotic medications I decided to not take any after I came out of the mental hospital. Nobody believed my symptoms are caused by withdrawal not a mental health issue. I don’t want to be more damaged than I already am.
I never had a mental health problem before taking paroxetine, I never asked for this drug in the first place. Please help me, I really feel like death alive, I have lost all hope and I feel so helpless right now.
Editorial Note: These movements look choreiform – the point is they do fit inot recognisable neurological patterns. We are interested to get as much input as possible from people with neurological issues on or withdrawing from any drug – not just psychotropic drug and not just antidepressants.