My Doctor thinks I’m Faking It; SSRI Movement Disorders

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August 2, 2020 | 13 Comments

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  1. I too have movement disorders from antidepressants tardive dyskinesia, tardive Dystonia and tardive akathisia. It took me two years to get referrals to neurologist’s and movement disorders neurologist’s after being told by many doctors that my problems were anxiety. I finally got diagnosed and unfortunately the condition’s have not improved much at all in the past few years even after stopping the medication.

  2. Stevie’s comment: “Someone whose specialism is the nervous system claims not to know about a drug whose intended function is to alter it?” just about sums up how compartmentalized modern clinical practice has become. No one takes interest in what the other specialities outside their are doing. Thereby, they miss many chances of fruitful cross-pollination of discoveries made outside their field. And to be fair, if they do put two and two together the ‘system’ makes it almost impossible for them to be heard above the roar of ‘Pharma’ generated misdirections.
    Alendronic acid is a class of Bisphosphonates, and are known immune system disrupters.
    After having had immune system problems for some 30 years now, I would lay money on it, that Stevie’s senstivity to thing ate, drunk and inhaled are symptomatic of the immune system over reacting to many chemicals that don’t cause other people any problems. This may have been an pre-existing condition but too mild to be noticed until some time after going on Alendronic acid. Ironically, this boosted immune responses is the reason given for why bisphosphonates are supposed to work. They have even been considered as adjuvants in vaccines. But the results of the trial was not published. Maybe it didn’t go well. [1]

    A dysregulated immune system can also cause conditions such as rheumatoid arthritis, bursitis and many neurological conditions. The immune system can attack any part of the body when its out of kilter. Even though this has been known for over one hundred years, it is still ignored by the mainstream teaching institutions.
    Therefore, I would suggest as part of a differential diagnosis is to see if this can be ruled out.

    Unfortunately, unless one is lucky enough to be under the care of a specialist, it has to be done oneself (remember: healthcare is a ‘market’ and some practitioners are just in it for the money, whilst lacking any real expertise). This do-it-yourself approach tends to makes one hyper vigilant to changes in ones symptoms and wanting to read too much into them. I know, I had to write mine down, so as to detach myself from them.

    Think its import to point out that what causes doctors and patient crossed wires when it comes to the immune system, is that the word ‘allergy’ for any ‘altered response’ to substances was in common use by the time that medical science decided that ‘allergy’ was to be reserved just for reactions involving IgE (as in hay fever, peanut etc., reactions. There are also ‘false allergies,’ masked allergies, and multiple chemical sensitivities (MCS) and autoimmune reactions which are all interconnected. These can be caused by pharmaceutical drugs too. This is why drug trials often get repeated until they have a pseudo-random cohort that exhibit few negative reactions. It can take a very long time (months) for some immunological affects to appear and thus cause and affect is not noticed. Like Jordan Peterson who unknowingly, probably developed a problem with metabisulphite additives due to SSRI’s from what I’ve been reading. Bad news is, that despite the claims of commercial labs there are no useful tests for this.

    So complex is this subject, that all I can realistically advise, is that one gets up to speed by reading the following two authoritative books which I have and the best I’ve found. Both are written for the lay reader, so neither gets bogged down in the technical details. Both give good ‘practical’ suggestions and advice on how to proceeded. Only after this, consider exploring adaptogens and amino acids to tackle the SSRI/SNRI’s.

    The first is by psychiatrist Dr Richard Mackarness, who had his clinic at Park Prewett Hospital, Basingstoke, UK. It has become a classic. He naturally focusses on the neurological aspects. And to paraphrase him, he exasperatingly asks “why are more doctors not doing this?”
    https://www.amazon.co.uk/Not-All-Mind-Richard-Mackarness/dp/0330245929
    The second is by Dr Jonathan Brostoff and Linda Gamlin. Jonathan was in Clinical Immunology at the Middlesex Hospital Medical School in London UK. Its a more general look at immune problems caused by what passes our lips but chapter 8 is devoted to psychoneuroimmunology (that’s all one word). Vitamin and mineral deficiencies and their involvement are discussed too. The book has quite a few useful appendices at the end. Jonathan also makes the point that in theory, medical ‘belief’ ought to be secondary to scientific evidence and discuss it.
    https://www.amazon.co.uk/s?k=The+Complete+Guide+to+Food+Allergy+and+Intolerance&i=stripbooks&ref=nb_sb_noss_2

    I’ll have to break off here, so finally. The atypical hand and foot movements has me wondering about the observation that in ME/CFS there are psychoneuroimmunology changes which include reduction of grey matter (GM) and white mater (WM) volumes. Well, it is also thought that WM lesions are involved in Progressive Multifocal Leukoencephalopathy due to a weakened immune system, allowing the proliferation of a virus which can cause movement disorders in different parts of the body. Is this what the video shows? Could lesions be caused by immune mediated inflammation by wayward leukocytes (as in ME/CFS) instead of a virus? I’ve found leukocyte involvement with other reports of SSRI/SNRI damage. BUT I’m running the risk of confirmation bias by just dipping in here and there. Frustratingly, no longer have the time to digest the advancements made in resent years, nor have the help of people who can help when I’m out of my depth to play devil’s advocate for me.

    My gut impressions are leaning strongly to SSRI/SNRI’s messing up the immune system.

    [1] The Effect of Alendronate on the Immune Response to Hepatitis B Vaccine in Healthy Adults
    https://clinicaltrials.gov/ct2/show/NCT02057263
    The End Of Bisphosphonates? Bombshell Study Proves They’re Ineffective
    https://saveourbones.com/the-end-of-bisphosphonates-bombshell-study-proves-theyre-ineffective/

  3. Does anyone know of any Doctors in London that will listen those who have been effected badly by these drugs?

    I’ve been thinking of paying to go private, very expenisve but it get’s me a full hour to try and explain to them, I mean it would probably fall on death ears anyway but it’s worth a shot.

    It’s so important to get a GP in your corner but it’s hard as nails to find one.

  4. It would be great to have a protest outside of the Royal College Of Psychiatrists in London, if there was enough people to make it effective, I would be there, I feel like our voices are never heard.

  5. Just in case some people (doctors even) are having difficulty seeing how food and chemicals in the air can get implemented in these conditions, think it worth pointing out that is the result of over simplification when it is said that (say) peanuts or some other food stuff ‘are the culprit’. Looked at another way, this is back to front. The usual reason the immune system adopts atypical reactions to a substances is because it has encounter them whilst under stress and misidentifies them as ‘not good’. It is a immune malfunction, simply that, even when caused by something else.

    Another miss understanding is ‘leaky gut.’ This phrase came into use before a better explanation was adopted. Its been proposed that the reason why potato starch appears in the blood stream of volunteers within minutes of them drinking a solution of it is because it enters via the ‘Peyers patches’ (which are specialized areas in the intestines) and not through the mucosal gut wall. This is thought to be so that the immune system can sample what’s in the gut to see if it is harmful to the body. So, its thought that if this coincides with a stressor (say a toxic drug or something else), the immune system gets confused. If it keeps finding something ingested that it has previously miss identified, a conditioned response can form to make one feel sick just from the sight of it.

    Peyers patches are but one path to confusing the immune system, viral and bacterial infections are another. So for example: The antibodies which attack the bacteria during Scarlett fever can also go on to attack the heart valves, as the the proteins of hart valves are very similar to the proteins of the bacteria. As there is no medical condition called leaky gut, this results in crossed-wires between unknowledgable GP’s and their patients who can only describe their symptoms as the leaky gut syndrome and the doctor only thinking in terms of psychiatric explanations. This is exasperated by the fact that some anti-depressants like imipriamine and the chlorpromazine antipsychotics have antihistamine properties too. Benzos can also dampen immune responses (I’m pleased that Jordan Peterson mentioned his own observation). This only goes to reinforces the doctors belief (with positive reinforcement from pharmaceutical sales reps), that patients with such symptoms are psychiatrically generating them, as these psychiatric drugs often show some slight amelioration.

    Well, all this theory isn’t much immediate help to someone that finds eating a truly horrible experience. So… When I couldn’t stomach food, I drank a liquid replacement meal called Enrich (by Abbott) available OTC from pharmacists. They also make Ensure and Ensure Plus (which is almost the same but without the soluble fibre). Symptoms should quickly lose their intensity over time ‘IF’ the immune system has indeed been overtaxed and off kilter. Either way it goes, it is very useful diagnostically, as no improvement at all, means something as well.. Was astonished that my GP wouldn’t proscribe Enrich as I hadn’t be diagnosed with ‘proven’ malabsorption etc. With the benefit of hind-sight, I should have eaten something in the surgery to demonstrate how food-goes-in and food-comes-out-again by the same route. Or a sample of stools in a clear plastic bag, to show that when food did stay down, it came out the other end only partly digested. The only diagnostic test I got was an ‘emergency’ chest X-ray due to such visible and rapid loss of weight between GP visits.

    Other replacement meals like Complan proved no good, as the proteins have not been broken up, like they have to be, for the Abbott products and other replacement meals suitable for ‘inflammatory’ bowel disease. The second best option (which has no lactoses or wheat proteins –which become the main antigens) was Farley’ Soya Formula baby milk powder, mixed up thick so I didn’t have to drink pints of it. The disadvantage with Soya Formula is that the immune system soon learns to attack the soya proteins in that as well, if the toxic substance(s) is not eliminated from the body first.

    If one can get the doctor to think in terms other than psychiatric, you might be able to get him to proscribe sodium cromoglycate as a temporary aid to eating. It has to be in the tablet form (not in a inhaler as for asthma). Taken ¼ hour before eating, it prevents the mast cells from producing histamine and other chemicals that makes one feel so rotten. This however, is not a long term solution.

    • Pogo, thank you so much for taking the time to give such lengthy and informative replies, and also for the book recommendations. I’m sure Sharron and K will find your input really helpful. There are certainly a number of things you say which matches my experience. I agree that SSRIs must mess with the immune system, but definitely not in a way which is recognised by any standard tests. I had tests down to mast cell level and everything was normal. The atypical reactions seemed to come from, as you described, encountering stimuli (which my immune system normally ignored) whilst under the extreme stress of withdrawal and mis-identified them as dangerous. After I learned that my immune system was “normal” I concluded that it the reactions must be nervous system dysfunction. I called them “phobic-style” reactions because they were accompanied by waves of fear, my body felt like it was in shock and I jerked. There was even a room in my house I couldn’t walk into without this happening (yep, I know how crazy that sounds) – by then I knew that my brain had to be classifying (for want of a better word) my normal life as dangerous. I wonder whether it was a form of toxic shock – a chemical overload, maybe? I feel very fortunate that I can eat almost normally now, and my nervous system is much improved, but I’m pretty sure that my gut and nervous system will still react pretty quickly to a drug. The gatekeeper is still on patrol!

  6. Stevie – I’m just wondering whether the people you know have checked through their medical records? Were the referral letters totally unbiased? Would it be possible to get a consultation with someone who hasn’t already been given a ‘history’? eg writing to a specialist to ask whether sertraline is the cause has already put a suggestion in her/his mind especially as mental illness is such a useful fob off. Might a totallly new consultation reveal that some had an underlying condition excacerbated by drugs rather than totally caused by drugs? Would that be possible as you say your condition has improved but you can recognise Sharron and K are still the acute phase – Are there recognisable phases which can be identified as the same or similar for most -considering there are some conditions which remit after a period of time? Sorry more questions than anything to help. What is shocking still is the length of time people stay with a doctor they no longer trust and how long people will take their prescription drugs before saying -no more’! for all the understandable reasons well rehearsed by now.

  7. Shaun – quote -‘Antidepressant withdrawal is a serious issue that can blight lives and result in life-changing harm for some people.”
    For more information contact the following signatories: (To letter of complaint to RCP) Might just be worth a phone call or e mail Good luck –
    James Moore (withdrawal sufferer)
    07414 525 200
    james.moore@mac.com
    rofessor John Read (psychologist)
    07944 853 783
    john@uel.ac.uk
    Professor Sami Timimi (psychiatrist)
    01522 535189
    Sami.Timimi@LPFT.nhs.uk
    If a group of scientists and psychiatrists together cannot challenge the RCPsych in a way that leads to an appropriate, considered response and to productive engagement with the complainants, what hope is there for individual patients to have a complaint taken seriously?

    Professor John Read (Clinical Psychology, University of East London)
    john@uel.ac.uk 0208 203 4943 07944 853 78
    Emeritus Professor Mary Boyle (Clinical Psychology) University of East London
    Professor Peter Gøtzsche (Medical Research) University of Copenhagen
    Dr Peter Groot (Psychiatry) University of Maastricht
    Dr Christopher Harrop (Clinical Psychology) University College London
    Carina Håkansson (Psychotherapy) International Institute for Psychiatric Drug Withdrawal
    Dr Hugh Middleton (Psychiatry) University of Nottingha
    Professor Jim van Os (Psychiatry) University of Maastricht; Institute of Psychiatry, London
    Professor Nimisha Patel (Clinical Psychology) University of East London
    Professor Paula Reavey (Psychology) London South Bank University
    Dr Derek Summerfield (Psychiatry) King’s College London

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    Lots of people have been disappointed that those who publicise don’t/can’t give consultations though.
    As you say you are thinking of going private be aware some ask for a GP letter – ask to see it before forking out cash GPs are not obliged to make a referral for a second opinion but there is some entitlement though not nececarily to a name d consultant.
    Guess you have thought of making a Rxisk Report.
    or may be a few tips on
    Managing Effexor and SSRI Withdrawal on Rxisk blog

  8. Professor Basant Puri has been invited to talk about his research on these brain function
    disorders by our University’s Family Medicine Department and Department of Psychiatry.
    The talk will be delivered at the Medical School on Thursday 11th December.
    All doctors, phannacists are invited to attend.
    Who is Basant Puri? Professor Sir Graham Hills describes
    him as a ‘distinguished medical scientist who is a leader in
    the field of brain science, and whose researches are of the
    highest originality and offer new and sounder basis for the
    future diagnosis and treatment of depression’ . Besides being
    a consultant psychiatrist, he is also a consultant to the
    Imaging Sciences Department of the Medical Research
    Council’s Clinical Sciences Centre at the Hammersmith
    Hospital. He is also head of the Lipid Neuroscience Group
    of Imperial College.
    A Cambridge graduate, Basant Puri recalls how, when
    he was training in psychiatry, he was struck by a lecture
    given by the now world famous psychiatrist Dr David
    Healy, on the many side-effects of antidepressant therapy,
    as he actively questioned the underlying theories about
    how depression occurs and how it should be treated –
    something not found in textbooks – and challenging
    prevailing medical wisdom.
    After psychiatry and neuroimaging training, Puri came
    across Professors David Horrobin and Ma1colm Peet’s work
    on essential fatty acids to treat depression. Information
    available then, and subsequent research, pointed towards
    one particular marine omega-3 fatty acid, ‘eicosapentaenoic
    acid’ (EPA), being head and shoulders above the others as
    a likely antidepressant. He set out to try EPA therapeutically
    as an antidepressant, and the initial astonishing results were
    followed up with trials confirming that EPA lifts even very
    serious depression.
    He further discovered that EPA improves brain function
    overall. He believes that the human body has a particular
    need for omega-3 fatty acids and that a deficiency is likely
    to lead to many of today’s common clinical problems.
    Western diet and lifestyle may have compromised our ability
    to make our own EPA. Factors such as caffeine, nicotine,
    stress hormones, saturated fats, trans-fatty acids and certain
    vitamin and mineral deficiencies may interfere with our
    bodies’ ability to produce EPA and closely related omega3 fatty acids. Now that this is understood, he recommends
    supplementation with EPA and other fatty acids, particularly
    if plenty of oily fish is not being consumed.
    Professor Puri admits that the path to establish the
    therapeutic role of EPA has not been easy, with the reaction
    from many of his psychiatric colleagues regarding his EPA
    research ranging from sceptic(I] to rlownright srMhine
    However, he is confident that EPA has been shown to work
    and that attitudes are slowly changing as evidence reaches
    a wirler imrlienre
    Depression and other mood disorders are characterised by
    reduced electrical brain activity (,circuit-board
    malfunctioning’), which is thought to be partly due to low
    levels of brain serotonin, noradrenaline and dopamine. Puri’ s
    theory is that neurons and neurotransmitters do not function
    properly because of an insufficient supply of EPA. He has
    demonstrated, with specialised MRI scanning, that these
    brain function disorders are accompanied by shrinkage of
    the grey cortex, and that cortical thickness recovery after
    a few months of EPA supplementation accompanies lifting
    of depression.
    He believes that EPA enhances the brain’s regenerative
    capabilities. Until recently, we thought that brain tissue
    was incapable of regeneration, but recent American
    experiments on rats demonstrated that neurons do regenerate
    in response to brain exercise. Interestingly, his MRI brain
    scans have demonstrated that pregnant women’s grey cortex
    shrinks (possibly because the foetus is scavenging the
    mother’s fatty acids for its own brain development) and
    then recovers its former thickness postpartum. This may
    well have something to do with pregnancy-related depression
    in some women.
    Puri claims that the naturally-occurring fatty acid EPA has
    a strong scientific basis for its success in treating depression,
    whereas pharmaceutical antidepressant drugs do not. He
    stresses that all antidepressants have side-effects (including
    the new SSRIs), ranging from minor ones such as nausea,
    dry mouth and dizziness, to more distressing ones such as
    sexual function loss, to potentially life-threatening ones
    such as convulsions and heart disturbances. He adds that
    EPA can be taken safely with antidepressant drugs, but
    caution should be exercised in conjunction with anticoagulant medication (fish oil has anti-coagulant properties).
    He believes EPA is a more reliable and scientifically sound
    natural alternative treatment for depression than St John’s
    Wort, and that EPA is also useful in schizophrenia and in
    Huntington ‘s.
    Puri has also researched chronic fatigue syndrome/myalgic
    encephalomyelitis (ME), a complex controversial illness
    characterised by variable symptoms, including intense
    fatigue, muscle and joint pain, depression, poor concentration,
    disrupted sleep and headaches. There is no definite cause
    for ME, and triggers such as viruses and personal trauma
    have been blamed. He believes there is some link with
    depression, although which comes first, depression or ME,
    is unclear. He and his Hammersmith colleagues have studied
    ME patients’ brains with MRI spectroscopy, and found a
    dear ann ~i nific nt chemical abnormality in these patients,
    which they didn’t find in controls. The abnormality is in
    the phospholipid layer of neuronal membranes, the same
    problem found in depression. He believes ME results from
    viral or other influences that reduce essential fatty acids,
    and that EPA is essential to recovery in the great majority
    of patients

    The Vegepa Club
    Simply the most affordable Vegepa available anywhere whilst automatically donating to crucial BIOMEDICAL research into ME/CFS
    Vegepa ClubSearch
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    Professor Basant K. Puri
    Honorary Clinical Research Fellow, 
Department of Medicine, Imperial College, London, who has published over 150 papers, mainly in imaging, neuropsychiatry, biochemistry, spectroscopy and physics and over 30 books, including textbooks in psychiatry and statistics.
    He holds the Patent on Vegepa which he himself formulated. (But has no financial rewards)

  9. I have experienced hell and back with a cascade of prescribed medicines, test and procedures.
    I do not need to be qualified to relay the horrendous experiences I have gone through.
    It was accumulative within a relatively short frame of time.
    It’s not just medicines that do the damage.
    It is also a combination of: radiation and other procedures and tests, which put me through further risk and harm.
    Try explaining this to a panel of professionals, when they conclude that it is all psychosomatic or inconsequential!
    To think that ME/CFS is all blamed on depression and trauma is still beyond my comprehension. It’s not just black/white!
    Looking at the patients’ medical history and understanding how residual health maladies are sustained, would give many professionals the answers they need (which some already know!) but choose not to know!
    I have tried fish oil and it gave me migraines/brain fog and upset my stomach.
    What may be beneficial for some may upset others.

  10. I came off Venlafaxine in early 2011. Withdrawal was horrendous. I didn’t know it at the time, I didn’t have the vocabulary, but I suffered from akathisia and Diazepam was my bail out drug. By 2013 I’d gone through several trials of psychiatric drugs including the reinstatement of Venlafaxine, all to no good effect. I think it’s likely I was experiencing a condition known as kindling, on the S.A. forum they refer to it as “post withdrawal hyper-reactivity to neurological substances”. It’s an understatement to say I wasn’t in great shape. Somewhere in the final months of 2013 I began a prescription of Pregabalin, I was either in acute benzo withdrawal or close to completing a taper, without my medical notes I’m a bit hazy on dates. The Pregabalin had the most disturbing effect on me. It rendered me incapable of speaking. When my speech returned it didn’t make sense, my speech patterns were bizarre. Some time later, certainly not long after I came off Diazepam, I developed severe abnormal movements that lasted throughout the day and throughout the night. I never got a break from them. My head would jerk, my arms and legs would thrash and writhe and generally take on a life of their own. When I watch Stevie’s video I see similarities except in my case the movements were wildly more exaggerated. I also had lip smacking, rapid eye blinking and terrible brain pressure. I always connected the worsening of my symptoms with eating or taking medications and/or supplements. I got my GP to refer me to a neurologist. His advice when I saw him was to go back to my psychiatrist. I’m glad to say I didn’t take him up on his advice. My present GP tells me these movements were attributed to anxiety. I know what a panic attack feels like and they’ve never led to symptoms such as I have just described. I can’t say which drugs were the main culprits, what I can say is that it doesn’t take a genius to realise that severe antidepressant withdrawal combined with the cumulative effects of around 11 different prescribed psychoactive drugs between 2011-2013, topped off by severe benzo withdrawal wasn’t brilliant for the health of my central nervous system. I’d like to have some answers as to what happened to me during this time. I’m seen a lot of improvement in recent years but the head jerking and brain pressure hasn’t completely disappeared and medications are often the trigger.

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