A recent RxISK post on SSRI triggered Movement Disorders – My Doctor Thinks I’m Faking It – put together by Stevie Lewis, attracted less attention than we expected.
This may be because it featured strange movements and few of us figure we are in a good position to make sense of strange movements.
The movements we featured don’t make sense to many neurologists, even sympathetic ones, either. The most constructive response to Stevie’s post has been that there aren’t many paroxysmal spasmodic disorders in neurology and so it’s not clear how to categorise these movements.
Ironically, the original Hippocratic writings, which laid the basis for neurology, don’t talk about convulsions or fits even though they describe epilepsy – they talk about spasms.
And lots of people who take antidepressants have paroxysms of spasms. Many people know about – myoclonic jerks – where a leg jerks out of the blue most often when we are about to fall asleep. It has been known for decades this is more likely to happen in someone taking an antidepressant and not just happen once off but sometimes with a volley of jerks.
A 1959 paper on a series of imipramine patients reported: One of these patients was a 39-year-old man who had previously been well… Prior to treatment he did not manifest symptoms of somatic abnormality, and the EEG was also normal. During the first 5 days of treatment he suffered from universal motor restlessness in the form of unintentional, coarse jerking movements. This disturbance intensified in spite of reduction in the dosage to such an extent that the patient was hardly able to descend the stairs or feed himself. When at its height, there were myoclonic jerks and jerky, throwing movements of the head and extremities. His gait reminded one of ataxia [impaired coordination] and on the whole he resembled a case of Huntington’s chorea. The pattern returned to normal shortly after [imipramine] had been stopped.
The paper reported that 1 in 5 patients… manifested motor disturbances.
Increasing attention is now being given to Osmotic Demyelination Syndrome and the role of antidepressants and other drugs in triggering this through their action on sodium ions and currents – see Grey Hair etc and Could your Antidepressant cause Dementia.
The point behind ODS is that it can strike anywhere in the nervous system which means that it can give completely different presentations from one person to the next – one person may seem to have atypical Parkinson’s, another atypical Steele-Richardson syndrome, and another atypical Motor Neurone Disease (ALS).
These difficulties play a part in the way neurologists respond to us when we present – a flavour of which can be got from responses to a post by Stevie Lewis on the Let’s Talk Withdrawal facebook page in June 2017 talking about neurological problems on withdrawal.
A significant number of people who have posted here mention that they have been referred to neurologists. I was wondering if some of you would be willing to share in more detail about that experience. We all have experiences in common with GP’s not believing that antidepressants lead us to suffer from adverse reactions and withdrawal. Is it the same with the neurologists you have seen? So my questions are:
- How many times have you seen a neurologist?
- What symptoms did you have that led to the referral?
- What drugs specifically do you think caused your problems?
- What was the neurologist’s diagnosis?
- What was the neurologist’s opinion about the role of the drug(s)?
I saw neurologists many times for migraines. All they ever did was to put me on mind-altering drugs against my desire to have my mind altered.
I have seen one neurologist (private) and waiting to see one on the NHS. Private neurologist was terrible. I am 4 years off a benzodiazepines and left unable to walk properly or to assimilate written information and speech. Also some other issues and my brain certainly does not feel right. Neurologist said that the drugs had nothing to do with my signs and symptoms. He tried to imply my sxs were psychological and I basically told him not to dare to suggest that. He did a cursory examination. He ordered an MRI scan at my request and nerve conduction tests. These were designed to eliminate possibilities and not to detect any current problems. He refused to discuss the subject of the drugs or to answer my questions. I wrote to him and told him I had no desire to see him again. He diagnosed neurological functional impairment but of course functional means “no biological basis” I have no doubt at all that he was lying to me.
I wrote to a neurologist in Edinburgh, Dr Jon Stone, about misinformation on his website about A/Ds. He said in his reply that he treated patients for A/D damage but his website portrayed A/Ds as unproblematic. There is no doubt that neurologists, GPs and psychiatrists are involved in covering this up to protect themselves legally.
3 neurologists 3 different diagnosis. First one csf leak. Second this lady thinks she is in protracted withdrawal and if not probable it is most likely (in writing) ignored by GP. Third this is functional and if you don’t stop blaming a drug you will not recover.
I was 1st referred to a neurologist in 1988 for “recognised” benzo symptoms that were misdiagnosed as MS & attempted lumbar punctures went terribly wrong. I was wrongly injected twice with the Valium sedative injection into my spinal cord. Over the yrs as all symptoms were appearing to increase but for no obvious reason, and with my GP insisting all was psychological/ somatic – was referred to a neurologist who said dystonias & to keep me on low dose diazepam as it caused the least side effects.
Then after c6 yrs due to increasing muscle rigidities, heart palpitations, anxiety & insomnia my GP suddenly insisted I was an addict & only taking the meds to suit my lazy increasingly bedridden lifestyle. But GP ignored the neurologist. Instead continued yoyoing & then completely restricted meds, & as I & my physical symptoms worsened, he insisted withdrawal & that cold turkey was best. I’d had a mix of meds mainly D’pam & T-pam & pain relief since the injury for 27 yrs.
Cold Turkey resulted in massive seizure with complete paralysis etc & with a locked in type syndrome 8.3 yrs ago. Since then I’ve been left with all new brain & spinal cord problems, intermittent paralysis & a constant torturous autoimmune-type deterioration. With significant physical evidence.
I’ve been referred to neurologist very many times in the past 9 years, once before withdrawal when toxic & once after w/d & before seizure, with brain zaps & in particular emails & info sent from Prof Ashton warning of sx & esp c/t seizures. To date despite regular neuro appts for 9 years – with 8 episodes in hospital with serious brain & s/cord activity, paralysis, 45min scissor jerks, blackouts, foot drop, etc etc – 5 consultant neurologists & their associated teams each still dismiss & refuse direct benzodiazepine expert contact & information from Prof Ashton & CITA. & despite the BMA statement October 2016, I’m still told – never heard of anyone else suffering from these meds, & therefore all must be psychological. After massive seizure neuro said “either something very sinister going on or she’s a good actor. Time will tell. I prefer to think good actor”. He also said he knew Prof A & would speak to her. Instead refused her contact & CITAs nurse expert too who offered to come to talk at the hospital & explain & inform all neuro staff. 8 yrs on & with 8 episodes in hospital I’m visibly physically deteriorating & very much worse.
Neuros all insist it’s not the meds & because it’s a psychiatric medicine – therefore symptoms are not believed as real & must be all psychological.
I was getting horrific tension headaches as saw a Neurologist in the 1990’s I was on benzo’s at the time… I had an MRI Scan… The Neurologist knew I was on benzo’s and over the counter pain killers Syndol… He reiterated I had classic tension headache symptoms and recommended continuing with the benzo and taking Amitriptyline! Found Amitryptyline disgusting so did not take it. I’m wondering if it was passed off as Psychosomatic! The equivalent now is probably MUS…
A neurologist diagnosed Dystonia in my neck!
Not many if any doctors or specialists, neurologists or psychiatrists, etc., will ever blame psych drugs on severe drug related injuries. They do not want big pharma, medical associations, and colleagues, etc., coming down on them for blowing the whistle, nor do they want to testify in court on your behalf. Forget trying to get a medical diagnosis for your injuries, unless you find a willing naturopath to help you. And naturopaths are in fear for their lives, as they are being systematically killed by big pharma. Unfortunately, we’re on our own, and really there’s no cure but detoxing and time.
I saw them 2 times, and they said it is impossible to meds damaged me and it is in my head
I was not believed at all at UCLH neurology.
I was diagnosed with non-epileptic dissociative seizures and complex regional pain syndrome, my trauma history is noted and when I brought up psych-meds, he said that is possible, I was referred to neuro-psychiatry, but I didn’t attend out of fear, I had a follow up and my case was closed.
I’ve seen 4 different ones, the first was before I took any meds and I had paresthesia – strange sensations in my legs. After a scan he basically said you’re fine go and enjoy your life. The second said the paresthesia (idiopathic – meaning you have it but we dont know why) may have been due to a virus and could go away over time, but as my MRI scan and nerve conductance studies were normal then to go away.
The third was after a failed trial on Citalopram and Sertraline gave me a movement disorder, he claimed I had “migraine with aura” plus anxiety and a myoclonus/movement disorder, no comment was made that it was due to meds but he did save my bacon as amitriptyline sorted the problem. I definitely did not have the movement disorder before trying Citalopram/Sertraline. I came off Amitriptyline due to a heart problem and had rebound and the movement disorder slowly came back.
I saw an NHS neurologist (the 4th) who said I have FND (Functional Neurological Disorder) and seemed to discredit the “Migraine with Aura ” diagnosis. So I am left somewhat confused on the diagnosis, all I know is there was some problem with my CNS before I took meds but that meds made it a whole lot worse. My mum had Parkinsons so I suspect I may not have great dopamine chemistry if one is to believe such things. And I suspect it is related to my gut function, over use of antibiotics and perotinitis at age 21. Now 54.
And from the Let’s Talk Withdrawal facebook page on 02 August 2020 following publication of the Rxisk My Doctor Thinks I’m Faking it article.
I’ve been seeing a neurologist after having to struggle for a long time for an appointment. I’ve had cognitive tests which show problems but which have still been watered down. The neurologist told me my severe facial muscle spasms were hemifacial spasms. She also attributed it to anxiety and mood. The dishonesty has been astonishing. She doesn’t want to say it’s tardive dystonia. I first got diagnosed with hemifacial spasms and got referred to a ENT specialist for Botox for the neck Dystonia and it was he that diagnosed me with tardive dyskinesia. My facial movements have improved greatly even the eye pulling but unfortunately the TD has spread to other muscles in my body from my neck. It mainly effects my neck, arm, pelvic floor, lower back and buttock muscles but I do get the odd random spasms in my chest, stomach muscles and feet.
Thank you Stevie. The video of you is a mirror image of me when my movements start. Thankfully not happened in a while now and hopefully as I’m tapering slow it will not come back.
What’s Up Doc?
A common theme coming from those being seen is expressed above by FF – neurologists are engaged in a cover-up. The words engaged and cover-up suggests something deliberate.
The question is – is it any more deliberate than belief in a religion whether it be atheism, progressivism, islam or christianity. Few of us can live without beliefs.
But we do seem to have a new belief system in medicine. If you bring a problem to them, doctors are increasingly incapable of seeing anything other than a disease for which they can only use the sacraments that are indicated.
A sacrament is something that can only do good. It cannot harm. The sacraments are how doctors heal people.
If we go to them suicidal, anxious, or depressed, they see Depression and Anxiety for which the treatments are anxiolytics and antidepressants – they do not see toxicity because there is no treatment licensed for toxicity. This is true for good doctors like those who were treating Stephen O’Neill.
There is no entry in the Holy Book for them to follow if they make a diagnosis of drug induced toxicity.
In the same way, if you are jerking or having spasms, they consult the Holy Books and if your condition doesn’t map onto what is there, it must be a mental problem.
Twenty years ago, neurologists came up with the idea of Functional Neurological Disorder relatively recently. This began life as something like Medically Unexplained Symptoms. For some people at least these were genuine efforts to concede that the doctor didn’t know what was going on but its very difficult to hang onto this position and the default is into seeing the patient as the problem rather than a problem in the patient.
And so, now, if there is no treatment approved for SSRI induced movement disorders, most of them will feel the only way to get you treated is to refer you to a psychologist or psychiatrist, when what we want is to be seen and perhaps even to be regarded as an interesting specimen that might warrant close attention.
A century ago, F Scott Fitzgerald remarked that it is a sign of a sophisticated mind to be able to entertain two contradictory thoughts at the same time. Up to 40 years ago, doctors used to be able to do this easily – even though they weren’t all that bright. Now the brightest of the bright young things who get into medicine find this difficult.
Managing this rather than trying to expose a cover-up is the problem that those of us on the receiving end need to learn to grapple with.