Functional Neurological Disorder?

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October 14, 2020 | 12 Comments

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  1. Real ‘lorraine’

    Simon Wessely Retweeted

    Tom Pollak
    @tompollak

    It’s breathtaking to see how much awareness and understanding of FND has changed, even in the 12 yrs I’ve been a doctor. Testament to amazing patient activism in the face of enormous stigma but also to a body of researchers who excel at both the science and at communicating it.

    FNDHopeUK
    @FNDHopeUK

    “FND Hope UK’s Patron @reallorraine launches our new exciting campaign #FNDandUs, keep watching our channels for the campaign and find out more at http://fndhope.org/fndandus

    https://twitter.com/FNDHopeUK/status/1316665119150166018

    you’ve never heard of …

  2. News
    Doxycycline: Coroner calls for MHRA to review side effects after student jumped from plane
    BMJ 2020; 371 doi: https://doi.org/10.1136/bmj.m4102 (Published 22 October 2020)

    Clare Dyer

    A senior coroner has demanded action from the Medicines and Healthcare Products Regulatory Agency after a student who had taken an antimalarial drug jumped from a plane to her death.

    Alana Cutland, 19, a natural sciences student at Cambridge University, was doing an internship in Madagascar when she had several attacks of paranoia.

    She had spoken to her parents and was about to fly home to the UK after cutting her internship short in July 2019 when she travelled in the Cessna light aircraft. She opened one of the plane’s doors and, despite attempts by the pilot and the other passenger to restrain her, …

    • Here is the full text of the BMJ piece

      A senior coroner has demanded action from the Medicines and Healthcare Products Regulatory Agency after a student who had taken an antimalarial drug jumped from a plane to her death.

      Alana Cutland, 19, a natural sciences student at Cambridge University, was doing an internship in Madagascar when she had several attacks of paranoia.

      She had spoken to her parents and was about to fly home to the UK after cutting her internship short in July 2019 when she travelled in the Cessna light aircraft. She opened one of the plane’s doors and, despite attempts by the pilot and the other passenger to restrain her, leapt from the plane.

      An inquest into her death determined that the cause was “traumatic injuries following a fall from a plane” but heard that she had been prescribed doxycycline as an antimalarial drug.

      Tom Osborne, senior coroner for Milton Keynes, wrote in his inquest report, “The deceased was prescribed doxycycline as an antimalarial medication for use whilst in Madagascar. It was quite apparent from the evidence that she had a psychotic reaction as a result of taking the drug and yet there is nothing on the drug information leaflet that either highlights or mentions this possibility.

      “If she or her parents had been aware of this possible side effect they may have been able to intervene earlier to avoid her death. In my view the information sent out with the drug should be reviewed. In my opinion action should be taken to prevent future deaths and I believe . . . your organisation [has] the power to take such action.”

      Doxycycline is a tetracycline antibiotic that can also be used to prevent malaria. The National Institute for Health and Care Excellence website lists anxiety as a rare side effect but doesn’t mention psychotic reactions.

      Coroners are under a duty to send reports, known as regulation 28 reports, to individuals or organisations they believe to be in a position to take action if their investigation reveals a risk that other deaths will occur in similar circumstances.

      An MHRA spokesperson said it had been granted an extension to the deadline for replying to the coroner’s demand for action “in order to seek independent expert advice.” The spokesperson added, “We are currently reviewing the available evidence on the suspected association between doxycycline and psychotic disorder. This is because psychotic disorders are not currently a recognised side effect of this drug.

      “We have informed the coroner that our review is ongoing, and any regulatory action will be communicated to healthcare professionals and patients. Malaria can be a very serious, sometimes fatal, infection. It is important that people travelling to areas that pose a risk of infection receive appropriate antimalarial prophylaxis.

      “Doxycycline has been authorised for the prevention of malaria and also for the treatment of bacterial infections and skin disorders such as acne for over 50 years. During that time many millions of people have taken it. The balance of benefits and risks for doxycycline is considered to be positive. Patient safety is our highest priority so, as with all medicines, we keep the product information for doxycycline under review.”

  3. We’ve just had a prescription for Doxycycline un our house. My husband was prescribed an antibiotic for a chest infection but was no better a couple of weeks after completing the course. Face to face discussions are rare at the moment of course, so, after sending a report to eConsult explaining the situation, Brian had a phonecall from one of the surgery nurses explaining that “the doctor has prescribed a course of a different antibiotic which will be at the pharmacy this afternoon”.
    On picking up the prescription I felt that the name of the “new antibiotic” was familiar. Once home I looked through the blogs on David’s site and there it was – ‘Doxycycline and Stephen O’Neill’.
    Luckily Brian was mentally fine on it but was annoyed that noone had explained what this “new antibiotic” was – neither nurse nor pharmacist had uttered a word about it. Anyway, as time went on he complained of a pain in an elbow and knee. This got to a point where even the weight of the duvet was uncomfortable. Out came the PIL once more and, sure enough, ‘joint and muscle aches’ were there on the ‘stop taking immediately and inform your doctor’ list. He had only one tablet left but, even so, eConsulted once more to explain. Back came the message to throw the last tablet away!
    If the PIL info was so important that taking a last tablet was not advisable, shouldn’t someone have just hinted that reading the PIL info in this instance was very important? Another example of dishing these drugs out like smarties without a care about the possible reactions I guess.

  4. A lot of these posts mention benzodiazepines. I had a terrible experience with clonazepam many years ago. I was only on it for 4 1/2 months. But it affected me in many ways for up to 2 years, I believe. The effects were the worst when I first discontinued the drug. Symptoms included:

    Difficulty tolerating-

    -riding in a car on a winding road
    -watching tv if images were flashed in quick succession and/or dialogue was fast
    -social situations, like a restaurant
    -being at a store, like Target, because the stimulation caused too much anxiety
    -making a phone call to a friend because it was too nerve wracking

    After being on clonazepam for a few months, then discontinuing it, I was a raw nerve for months and months, maybe years (it faded very gradually).

    My anxiety after discontinuing the med was 3 times what it was compared to what it was before I started the med.

    Also, during the ”after med” period I experienced months and months and months and months of daily suicidal thinking. This was something else that was new. Previous to taking clonazepam, I had experienced suicidal thoughts. But they were limited to a few hours here or there once in a while.

    I ended up having to go into the hospital during the end of the clonazepam taper. That was a first.

    Clonazepam darn near precipitated a suicide attempt. I am very lucky that I didn’t sink quite that low. But it’s not because I’m a hero, IMO. I simply feel fortunate.

    Please note that I took the clonazepam as prescribed. Also, I wasn’t drinking or taking any recreational drugs at the time either. I was, however, taking Zoloft.

    But I’m grateful to report that I have a pretty good life today. A wife, kids, house, and 2 cats.

    Thank you for reading.

  5. Mary, thank you for your interesting post – a Recap and a Knee-Cap…

    An MHRA spokesperson said it had been granted an extension to the deadline for replying to the coroner’s demand for action “in order to seek independent expert advice.”

    A series of case reports presented by Atigari, Hogan, and Healy (2013) document the unexpected onset of depression and suicidality among 3 doxycycline users with no history of neuropsychiatric disorders or symptoms.  After initiation of doxycycline treatment, all 3 users became depressed and suicidal, followed by suicidal actions and death in 2 of the 3 patients.

    https://mentalhealthdaily.com/2018/08/04/doxycycline-causes-depression-anxiety-suicidal-ideation/

    https://rxisk.org/wp-content/uploads/2020/01/2013-doxycycline-bcr-2013-200723.full_.pdf

    In less than 5 minutes of sending the aforementioned text message, Patient A jumped off a school building near his home which resulted in death.  No warning signs of suicide (e.g. abnormal behaviors, statements, etc.) were noticed by Patient A’s family and friends leading up to his death.

    this case supports the idea that doxycycline may cause depression and suicidality.

     Patient C commit suicide via hanging.  This case further supports the idea that doxycycline can cause severe depression and suicidality in select persons.

    A month after Stephen’s inquest, an horrific death of a young woman grabbed the attention of many people, not just in the UK.  The drug she was on – doxycycline – was immediately in the frame. I was asked to provide a report and another coroner had to come to a conclusion.  Could he find a Sanity Clause?

    https://davidhealy.org/doxycycline-and-stephen-oneill/

    Welcome to AntiDepAware

    Latest news: Coroner submits PFD Report following death of student who jumped from light aircraft in Madagascar after being prescribed Doxycycline

    5 CORONER’S CONCERNS The MATTERS OF CONCERNS are as follows: The deceased was prescribed doxycycline as an antimalarial medication for used whilst in Madagascar. It was quite apparent from the evidence that she had a psychotic reaction as a result of taking the drug and yet there is nothing on the drug information leaflet that either highlights or mentions this possibility. If she or her parents have been aware of this possible side-effect they may have been able to intervene earlier to avoid her death. In my view the information sent out with the drug should be reviewed.

    https://www.judiciary.uk/wp-content/uploads/2020/10/Alana-Cutland-2020-0151_Redacted.pdf

    “The balance of benefits and risks for doxycycline is considered to be positive. …

  6. 04 November 2020
    Jill Nickens
    Founder, Akathisia Alliance for Education and Research
    P.O. Box 180415, Utica, MI 48318
    Respond to this article
    Read all responses to this articleA functional neurological misdiagnosis, akathisia, and suicide
    Re: Recognising and explaining functional neurological disorder Jon Stone, Chris Burton, Alan Carson. 371:doi 10.1136/bmj.m3745
    Dear Editor,

    The purpose of this response is to shed light on the significant harm that can be caused by a functional neurological disorder (FND) misdiagnosis, especially in the case of akathisia, and to challenge the authors’ claim that it is rarely misdiagnosed.

    In Psychogenic Explanations of Physical Illness: Time to Examine the Evidence (2016) [1], Wilshire and Ward state what should be obvious, “Medical practitioners simply cannot assume that the current knowledge of disease and its markers is 100% perfect or that all complaints not otherwise accounted for must have a psychological origin.” Stone, et al. cite a “systematic review” from 2005 [2], also co-authored by Stone, which concluded that only 4% of patients diagnosed with FND are misdiagnosed. This was based upon the fact that the patients included in the study had not later been diagnosed with an established organic neurological disorder. Although the authors seemingly use this statistic to purport the accuracy of the FND clinical assessment, it simply proves there was still no medical explanation for the patients’ symptoms years later, not that one did not exist.

    As founder of the Akathisia Alliance for Education and Research, I represent thousands of people who are being misdiagnosed with FND by clinicians who have little to no knowledge of medication-induced akathisia. This is causing catastrophic harm in many cases. Already suffering from the suicidality inherent in akathisia, the FND misdiagnosis can result in loss of family support, abandonment, mistreatment, homelessness, involuntary hospitalizations, and forced drugging with medications that exacerbate the symptoms and increase the likelihood of suicide.

    Patients with akathisia are being misdiagnosed by neurology as psychogenic/functional primarily because their motor symptoms can be distractible and suppressible, yet these are positive, documented features of this medication-induced disorder (Factor, Jankovic, 2020) [3]. It is well documented that certain neurotransmitters and neuropeptides affect physiological as well as psychological processes (Shu-Heng, Li-Peng, Xu, et al., 2020; Bamalan, Al-Khalili, 2020) [4,5]. Thus, it stands to reason that side effects and withdrawal symptoms of commonly prescribed medications such as antiemetics, antipsychotics, antidepressants, benzodiazepines, etc., could be multi-systemic and organic, and undetectable upon clinical assessment.

    On behalf of the many people being harmed by the FND diagnosis, I hope the authors and their colleagues will begin spending more time looking for an explanation for “medically unexplained symptoms” and less time training clinicians based on the assumption that every possible neurological disorder has already been discovered. Many lives could be saved.
    04 November 2020
    Respond to this

    And in Evidence-Based Medicine another cause of concern is below, especially perhaps as Andrea Cipriani is involved
    ie in
    Evidence-Based Mental Health
    Home Archive Volume 23, Issue 4
    Article Text
    Association between mental disorders and somatic conditions: protocol for an umbrella review
    http://orcid.org/0000-0001-5877-8075Samuele Cortese1,2,3,4,5,6, http://orcid.org/0000-0003-4877-7233Marco Solmi7,8, Gonzalo Arrondo9, http://orcid.org/0000-0001-5179-8321Andrea Cipriani10,11, Paolo Fusar-Poli8,12,13,14, Henrik Larsson15,16, Christoph Correll17,18,19
    Author affiliations
    Abstract
    Introduction Although several systematic reviews (SRs)/meta-analyses (MAs) on the association between specific mental disorders and specific somatic conditions are available, an overarching evidence synthesis across mental disorders and somatic conditions is currently lacking. We will conduct an umbrella review of SRs/MAs to test: 1) the strength of the association between individual mental disorders and individual somatic conditions in children/adolescents and adults; 2) to which extent associations are specific to individual mental and somatic conditions .

    Methods and analysis We will search a broad set of electronic databases and contact study authors. We will include SRs with MA or SRs reporting the effect size from individual studies on the association between a number of somatic and mental conditions (as per the International Classification of Diseases, 11th Revision). We will follow an algorithm to select only one SR or MA when more than one are available on the same association. We will rate the quality of included SRs/MAs using the AMSTAR-2 tool. We will assess to which extent mental disorders are selectively associated with specific somatic conditions or if there are transdiagnostic, across-spectra or diagnostic spectrum-specific associations between mental disorders and somatic conditions based on the Transparent, Reporting, Appraising, Numerating, Showing (TRANSD) recommendations.
    Discussion The present umbrella review will shed light on the association between mental health disorders and somatic conditions, providing useful data for the care of patients with mental health disorders, in particular for early detection and intervention. This work might also add insight to the pathophysiology of mental health conditions, and contribute to the current debate on the value of a transdiagnostic approach in psychiatry.

    Contributors SC drafted the protocol. SC, MS, AC, PF-P and CC elaborated the algorithm. SC, MS, GA, AC, HL, PF-P and CC critically revised the first draft of the protocol.

  7. Alana Cutland: Parents’ shock over malaria drug behind plane fall

    By Phil Shepka

    BBC News

    6 hours ago

    https://www.bbc.co.uk/news/uk-england-beds-bucks-herts-54818652

    The parents of a student who fell from a plane after a psychotic reaction to an anti-malaria drug were “shocked” to find its side effects were “virtually undocumented”.

    Alana Cutland, 19, from Milton Keynes, died after the fall in July 2019 in Madagascar.

    A coroner has asked for a review of the information sent out with doxycycline.

    The Medicines and Healthcare Products Regulatory Agency (MHRA) said it was gathering “further information”.

    The Cambridge University student was at the end of her second year studying biological natural sciences when she visited the African island for a research internship.

    She opened the door during a flight between Anjajavay and Antananarivo and fell to her death, a prevention of future deaths report by senior coroner for Milton Keynes Tom Osborne said.

    Mr Osborne said it is believed that she “suffered a psychotic/delirium event that led to her behaviour and death”.

    He said it was “quite apparent” the reaction was as a result of taking the drug and yet there was “nothing on the drug information leaflet that either highlights or mentions this possibility.”

    “If she or her parents have been aware of this possible side-effect they may have been able to intervene earlier to avoid her death,” he added.

    Her parents Neil and Alison Cutland said it was “tragic” that Alana’s death was “essentially caused by the side effects of doxycycline”.

    “We realise that such drugs have an important role to play, but it shocked us to discover that such a severe side effect could be virtually undocumented,” they said in a statement.

    Doxycycline has been authorised as an anti-malaria drug for more than 50 years. It is also prescribed to treat bacterial infections and skin disorders.

    An MHRA spokeswoman said they had reviewed the “suspected association between doxycycline and psychotic disorder” after the coroner’s report and work was “continuing”.

    She said: “Our independent expert committee has advised that the available evidence is currently insufficient to support a causal association, and has asked us to gather further information.”

    Mr and Mrs Cutland said they have been “surrounded by the love and support of countless people” since their daughter’s death.

    “We rejoice in Alana’s life: her amazing talent for modern dance and ballet, her academic achievements that made us so proud, and the sheer sense of fun that she brought to every room that she walked into.”

    They said they were “hugely grateful” after raising more than £33,000 towards a grant fund in her name at Robinson College for female science undergraduates and a school extension in Anjajavay “where the villagers went to extraordinary lengths to search for her”.

    “We think of Alana every single day and miss her dearly. It gives us comfort to know that her legacy is already so significant and will truly change lives in Madagascar and Cambridge through the power of education.”

  8. The following podcast, gives us insight, as to how many Veterans suffer mentally/physically, from many years of intense duty.

    https://podcasts.apple.com/au/podcast/justin-sheffield-u-s-navy-seal-afghanistan-iraq-somalia/id268683465

    Justin, reaches many, from his adversity and is able to help many Veterans through the All Eagles Oscar Foundation, he has set up.
    We must not forget our Veterans and how over prescribing can take a toll on their mental well being.
    After 14 years of combat as US Navy Seal Veteran, Justin Scheffield, highlights how wars have impacted his life.
    Mentally and physically, he has tried to adjust to life after combat.
    Sadly, when he returned back home, he felt like committing suicide.
    Being home more, after service, he was prescribed a lot of medication where he felt like a zombie. This was very problematic.
    Justin goes on to explain that you have to be very careful with what you take because you are going to be prescribed all kinds of things.
    Justin is trying to educate people about over prescribing of medicines.
    Justin said he can get Oxy from the VA for pain however, he chooses not to. He chooses to use other things.
    Many Veterans suffer from PTSD and want to keep it a secret. It is a state of being, that is not good.
    The medication had helped for a while however, many have killed themselves because of being at home and being depressed.
    Now, Veterans have a new therapy which guides the military, guys, buddies and people who listen to his podcast.
    Justin had a feelings of suicide for a long time.
    Part of it is feeling like a failure and he was physically hurting all the time.
    A lot of the time he was thinking what he was going to do.
    At times, he felt like a failure and a looser.
    PTSD is something that a lot of Veterans are ashamed of.
    Part of his job is to talk to Veterans who have been through this. Many have kept it a secret because they are not going to look tough anymore because they have this problem.
    PTSD makes people not sleep, they sweat and have nightmares. Justin goes on to saying that it’s this state of being, that is just not good. It is treatable.
    Time and space helps.
    Friends and teammates get together for therapy instead of taking a pill to sleep or other pills to help them deal with the trauma.
    Some of the things they are doing with the Foundation is phenomenal.
    Multiple friends and teammates, from all different branches of service have been treated and they have experienced positive results.
    Justin, goes on to say that it is not a cure however, Veterans sleep on their own, without medication and are able to focus instead of taking some other prescribed medication.
    The medication is good for a short time – it helps however, how many men are killing themselves?
    Justin knows many guys who have killed themselves and going military wide – It is crazy!
    Part of the feeling is that you are on top and you are at war and then all of a sudden it is all over. Suddenly, you are at home.
    Justin was shooting people. They are in for his life and then reality hits him and he is at home, sitting in his living room, thinking what is he supposed to do? This is a morbid feeling that many Veterans face.
    All of this has an effect on your physical and mental well being.
    There is a lot of shame associated with feeling like a failure and failing your team.
    Justin goes on to explaining that he was just another guy they relied on and now you can’t be that guy for them or their family. It is so easy to get to suicide.
    Once Justin found the therapy he needed, with the strength of his wife, family, faith and all the resources he had, he decided to turn things around and do something positive to help others.
    That is when the All Eagles Oscar Foundation comes in. The Foundation stands for: All of us are OK.
    Justin started the Foundation because when he went through treatment, there was nothing to pay for it.
    There are several foundations that are helping many Veterans.
    Sadly, there have been many Veterans that have wanted to commit suicide.
    When Justin takes them under his wing, he witnesses amazing results.
    Justin had good friends, family and children.
    He had a lot of reasons to not end his precious life.
    He had to talk to a lot of Veterans out of a negative mindset they have.
    Veterans end up doing many good things for other people.
    Justin is a huge advocate for cannabis (CBD).
    Justin said it certainly helps with pain and anxiety.
    Sadly, the pharmaceuticals are making too much money off Veterans.
    Many of the Veterans are put in the brain treatment centre and are being treated with magnetic resonance therapy. As you relax or fall asleep, magnetic resonance therapy, repairs your cells on a molecular level. It restores the cells to their greatest level of vibration. Or simply put, it helps your body work the way it was meant to.
    Over time, it influences neuron dysfunction back to everything working.
    The Foundation produces amazing results.
    Veterans have hope, that there are answers for them.
    It is sad to know that many Veterans are killing themselves, more than in combat.
    The Foundation helps Veterans overcome this.
    Thank you, Justin for helping our fellow man, re-enter civilian life, with hope and dignity. Justin gives as an honest insight into the dilemmas that many Veterans and their families face after intense military service.

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