Coming off Depakote

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October 28, 2019 | 7 Comments

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  1. Fantastic story, well done

    One of my lingering effects of Seroxat, is head noise, too..

    Its like an electrical fault, buzzing away, but, the worst are the ‘head explosions’, always at night.

    The zaps went on for years and years, but sometimes now I get a run of small explosions in my head. Imagine a hand-grenade or a fire-work, in your head.. Pow Pow Pow

    A few months ago, I had a monster explosion in my head. It was so colossal, my head lifted off the pillow. I used to have body-type seizures, cold-turkey from Seroxat. My body would lift off the bed. It was quick and sudden and gone in no-time.

    But, this head thing is something else.
    It is not tinnitus, which is a ringing in the ears.

    This feels like it is deep under the skull.
    Deep.

    .

    • Hi Annie can relate with what you wrote I had zaps for years to very frightening like you said seizure type episodes after seroxat. I also developed intrusive thoughts and images that I’d never had when I came off did you get anything like that. Never had ocd before

      • Hi Karl

        It is extremely difficult to recover from the insane amount of withdrawal effects we were bombarded with from Seroxat. The absurd pil leaflet, the absurd guidelines, don’t cover it.
        Trying to come out of all that, is very hard to divorce real from unreality.

        It is a very gradual process.

        Weird thoughts were intrusive, how could they not be..

        I knew my thoughts were distorted, and the only way I could combat this, was to do my best to act and think normally.

        I started a gardening business, there was no way I was going to go down the benefits and disability routes, that would have hindered me even more. I am very independent.

        Doing hours and hours of weeding in the freezing cold, took the edge off, plus having to home educate my child and walk the labrador for hours – it was really hard, but, I think it helped to disentangle the distortion back to some sort of reality.

        There is still a level of shock in my system, that will probably be permanent.

        No one can fully estimate the power this drug had to alter all sane thought and behaviour, and I appreciate you wanting to talk about it.

        It is not something we just get-over, and move on..
        Much too life-altering.

        • Hi Annie that’s very kind off you to get back to me thankyou I had a permanent job for 11 years untill I stopped Seroxat which I had to leave because I was sleeping two hours a night for 18 months. I didn’t claim benefits in this time wish I had off but was to unwell to do anything lived off my savings. Luckily I found someone who took me on a couple off days a week gardening which is all I could manage which I’ve done upto now not the career path I’d have chosen but being an outdoor person didn’t mind this has helped. I also have developed fibromyalgia since quitting and have been left with intrusive thoughts and images I never had. Im self employed now don’t earn loads but far more than if I was on the sick I work a couple off days a week sometimes and some weeks I might work everyday depending on how much work I have or how I’m feeling. Been doing this four years and gradually built it up to be honest if it wasnt for the fact I have kept busy don’t know i would have survived withdrawal and often feel worse on the days I’m off symptomatic which is a shame because I can never really relax I have the odd good day . I find the winter worse since withdrawal and this fibro crap I’ve developed. I was on seroxat 13 years taken nothing now for seven years absolute hell for years coming off never got back to baseline but like you by the sounds off it do my best. I also work outdoors in freezing weather every month off the year even when the fibro makes my legs in the cold feel like there full off super glue I try to never give up think people who have been through this are true warriors thankyou for replying it’s good to be able to relate with others Karl 🙂

  2. This post and others like it are invaluable for reference when helping people decide whether, when, and how to taper.

    “But so important is the underlying stability of the person being healed. We in most cases are fragile people who have experienced trauma in many ways and psychological preparedness for the stress of this needs to be established before trying to taper.”

    That whole section is excellent.

    I’d like to encourage any who are interested, perhaps especially people already working in a peer support capacity, to check out GAM, a method developed in Quebec that empowers service users to assess their overall quality of life, the role of medications in either enhancing or detracting, and to prepare for tapering if that is what they desire.
    http://www.rrasmq.com/GAM/documents/GuideREP-ANG_2014-04.pdf
    The workbook I’m currently using in a Recovery Center setting is here: http://www.rrasmq.com/GAM/documentation.php#TakingBackControl

    RxISK and David Healy are mentioned in a section on a patient’s rights for information on medication:

    “Access to information on prescribed medications is often a basic need for
    medication users. Access to the most comprehensive and objective information
    about drug treatment, its benefits and risks, and the various alternative or
    complementary therapeutic options available is a right for people who are
    prescribed medicines, psychotropic or otherwise… doctors do not always
    have the time to provide all the necessary information on the medications
    they prescribe. It is therefore important that mental health providers who
    advise medication users ensure that they receive and understand the available
    information on the drugs prescribed, their instructions for use, desired effects
    and side effects, drug interactions, and different treatment options, if so desired.
    There are several sources of information on psychotropic drugs, including
    pharmacists, reference books such as the Compendium of Pharmaceuticals
    and Specialties, the Guide critique des médicaments de l’âme (Critical Guide
    of Psychiatric Medication; Cohen et al, 1995), Psychiatric Drugs Explained
    (Healy, 2008)* courses on psychiatric medication, and the Internet**. This
    information can also be conveyed by different means: during individual
    follow-up meetings, through workshops on medications, or by way of posters
    displayed in organizations or establishments.

    * Sources of information regarding psychiatric medication must be reliable and varied in order to get a full picture. User accounts, information from a critical perspective, along with more mainstream sources, are all useful.
    ** As an example, the Web site http://www.davidhealy.org and the tab “RxRisk Papers” can be consulted as an introduction to the general information and issues surrounding the different classes of psychiatric medication.”

    From what I have read, GAM is used primarily in Canada, and there are some projects in Spain and Brazil. The language is less polarizing than a lot of what is typically seen in prescribed harm circles and has enough backing in Quebec as to be accepted in more mainstream settings.

  3. NHS bill for US drugs ‘could soar under post-Brexit trade deal’
    Dispatches investigation finds ‘drug pricing’ has been discussed in six initial meetings between trade officials from the UK and US.

    By Paul Gallagher
    Monday, 28th October 2019, 11:22 am
    Updated
    22 hours ago

    The price the NHS pays for US medicines could soar under a trade deal with the United States after the UK leaves the European Union, according to an investigation.

    Despite Boris Johnson’s assertion that the NHS is not on the table, sources with knowledge of the initial trade discussions between the two countries question whether the Prime Minister is able to keep to that promise. In fact “drug pricing” has been discussed in six initial meetings between trade officials from the two countries and secret meetings between US drugs firms and British civil servants where medicine “price caps” have been talked about, according to Dispatches.
    The programme, broadcast on Channel 4 on Monday night, was also told that British trade officials have been warned that the subject is so sensitive that they must not mention “drug pricing” in emails but use the term “valuing innovation”.
    NHS staff and health campaigners fear the US government and its powerful pharmaceutical industry want the health service to pay more for their drugs, which are much more expensive in the US. Currently, the UK can block American drugs not deemed “value for money” and allow cheaper alternatives to be prescribed to patients which save the NHS hundreds of millions of pounds a year. However, the system could be under threat under a new transatlantic trade deal.

    According to research carried out for the programme, the cost to the UK government could be approximately £27bn, wiping out the potential Brexit bonus for the NHS promised by Mr Johnson. In an interview with the programme, one of Donald Trump’s former top trade negotiators Stephen Vaughn said he does not understand what Mr Johnson means when he says the “NHS is not on the table
    Stephen Vaughn, former general counsel for the Office of the US Trade Representative, said: “That that really goes to the question of what the UK government means when it says the NHS is off the table. I don’t know what they thought they meant when they said that. “
    Until April this year, Mr Vaughn was the top lawyer in the Office of the US Trade Representative and a key player in recent trade deals with Canada, Mexico and South Korea which saw the US win key concessions over the price those countries paid for US medicines.
    Mr Vaughn said: “I would expect US negotiators to see what we could do in terms of getting increased access to the British market. That’s what we do… I think it’s going to be likely to come up because the US mentioned pharmaceuticals in its negotiating objectives”

    The programme focuses on the drug Humira, used to treat 46,000 patients in the UK who suffer from diseases like rheumatoid arthritis and Crohn’s disease, made by US drugs company AbbVie. It is the single most expensive drug for the NHS costing £450m a year. Last year, the NHS started prescribing cheaper alternatives to Humira that will save the health service £150m a year.

    Cheap alternatives
    Unlike in the UK, patients in the US will not be allowed to be prescribed cheaper alternatives to Humira until 2023. Trade experts fear that should a trade deal be signed with America, then the US administration will force Britain to adopt similar policies.

    Dr Andrew Hill, from Liverpool University, estimates that adopting the US system of drug pricing could cost the NHS £2.9bn alone for Humira. He also calculates that if the US government and drug firms get their way in trade negotiations, the total extra cost to the UK could be £27bn.

    Matt Hancock has said “the NHS is not for sale” and that the health service would not be on the table in any future trade talks. The Health Secretary was responding to comments by the US Ambassador that freer access to the NHS will be part of any post-Brexit US-UK trade deal. Woody Johnson – a member of the Johnson & Johnson pharmaceutical family – said that healthcare – along with “all things that are traded” – would be on the table in negotiations for a deal.

    A no deal Brexit would have devastating consequences for medical supplies in the UK, experts have warned. It could lead to a shortage of some drugs, which might not have the required regulatory approval by the end of January 2020 to continue being brought in from the EU, or price rises in the event of drugs needing to go through a new licensing process. If the UK leaves with a deal any disruption will be lessened.

    A spokesperson for the Department for International Trade said: “The NHS is not, and never will be, for sale to the private sector, whether overseas or domestic‎… The sustainability of the NHS is an absolute priority for the government. We could not agree to any proposals on medicines pricing or access that would put NHS finances at risk or reduce clinician and patient choice.”

    Boris JohnsonBrexitMatt HancockNHSTrade DealUnited

    Couple that with this and as useless as the MHRA and other regulators have been, and that EMA are flagging up that they won’t be able to do a proper job in future – anybody using drugs is even more so pharmas’ rich pickings. With collusion of medics.( Johnson and Johnson are involved always a marker to note)
    Britain’s leading role in evaluating new medicines for sale to patients across the EU has collapsed with no more work coming from Europe because of Brexit, it has emerged.

    The decision by the European Medicines Agency to cut Britain out of its contracts seven months ahead of Brexit is a devastating blow to British pharmaceutical companies already reeling from the loss of the EMA’s HQ in London and with it 900 jobs.

    All drugs sold in Europe have to go through a lengthy EMA authorisation process before use by health services, and the Medicines & Healthcare products Regulatory Agency (MHRA) in Britain has built up a leading role in this work, with 20-30% of all assessments in the EU.

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    The MHRA won just two contracts this year and the EMA said that that work was now off limits. “We couldn’t even allocate the work now for new drugs because the expert has to be available throughout the evaluation period and sometimes that can take a year,” said a spokeswoman.

    In a devastating second blow, existing contracts with the MHRA are also being reallocated to bloc members.

    Martin McKee, the professor of European health at the London School of Hygiene and Tropical Medicine, who has given evidence to select committees about Brexit, said it was a disaster for the MHRA, which had about £14m a year from the EMA.

    The head of the Association of British Pharmaceutical Industry said it was akin to watching a “British success story” being broken up.

    Mike Thompson, the chief executive of the association, said: “Clearly we’ve all been incredibly proud of the MHRA’s role over the last few years. They’d established themselves as one of the most respected regulators across all of Europe and industry. It’s been a British success story.”

    The EMA said that because of the long lead-time involved in assessing medicines it could no longer award the lead contracts to British people since there was no guarantee they would be part of the EU after March 2019.

    It is understood the MHRA bid for 36 EMA contracts this year but were only awarded two, and these were for drugs for which evaluation had already begun.

    The situation is a stark contrast to 2016 when the UK was the lead assessor, known as the rapporteur, on 22 applications, and was joint lead or co-rapporteur on 19 multinational applications. This made it the number one in Europe, with Germany’s regulator behind with 22 lead contracts but only 12 co-contracts.

    European Medicines Agency applications for medicines marketing approval.
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    European Medicines Agency applications for medicines marketing approval. Photograph: EMA/European Medicines Agency
    The EMA now also requires all existing drugs assessors to transfer their personal knowledge of their specialist fields to counterparts in a European member state.

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    “You might have been working on a cancer drug for decades and built up so much expertise and you are the absolute specialist in your field and now have to transfer all your knowledge to someone else. It must be like handing over your baby,” said one source in the EMA.

    Thompson suggested the removal of the MHRA from the approvals system was the EU’s loss. The MHRA did one-third of all the manufacturing inspections and in terms of patient safety they had picked up one third of all “adverse events”. He said: “This is a pre-eminent regulator. As part of the withdrawal agreement the UK regulator … they will just be an observer in that system.”

    McKee said: “The MHRA has benefited enormously from its close links with the EMA. The fracturing of those links will impact severely. on its budget, much now from the EMA, and its ability to attract and retain skilled staff.”

    The loss of these valuable specialist contracts underlines the punishing impact Brexit is having on services that supports the pharma industry in Britain.

    The EMA has already started its move from Britain to its new headquarters in Amsterdam. It employs 900 staff in its Canary Wharf offices, in London, and 84 have already relocated to the Dutch capital, the EMA said. It expected that about 300 of its staff would be unable to relocate and have to find new jobs because of Brexit.

    The ABPI said the change in approvals meant a huge cost to the medicines companies.

    Thompson said: “Companies are having to build extra laboratories to try to prepare to batch-release medicines made in the UK on the continent. That’s a huge cost for us. Hundreds of millions of pounds that we’re having to spend that frankly we’d rather spend on researching new medicines. We have no choice because we have to ensure what we do is legal. It’s probably wasted money in the end.

    “We regret that, because the MHRA is a highly respected agency. We’d hope that could be resolved as soon as possible. Ultimately it will be difficult for them to hang on to the capability that they have spent many years building up.”

    The MHRA said it hoped its relationship with the EMA could be salvaged in negotiations.

    An MHRA statement said: “We want to retain a close working partnership with the EU to ensure patients continue to have timely access to safe medicines and medical devices. This involves us making sure our regulators continue to work together, as they do with regulators internationally, and we would like to explore with the EU the terms on which the UK could continue to participate in the EMA.”

  4. So eloquently stated:

    We in most cases are fragile people who have experienced trauma in many ways and psychological preparedness for the stress of this needs to be established before trying to taper. It’s monumentally hard. Internal and external resources are so important in the way of supportive family, friends, work, professionally – psychiatrist, psychologists, therapists.

    Sadly, many are left in the lurch, especially, when no one appreciates or fully comprehends, ones dilemma. Many are ‘walking wounded’ and sadly once harmed, are no longer willing to TRUST! If all the healing professions and people who are prescribed these medicines, were to come to RXISK and utilise it as an educational resource, many would take heed and have a totally different perspective of how we perceive medicines and procedures.

    We are generally told to ‘trust’ and conform to – and not challenge or question.

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