What informed consent would have meant for me.

If I had received an informed picture of what these medications could do I would never have taken them.

Benzodiazepine dependence has nothing to do with “cravings” or emotionally wanting to take them. Most people who have been dependent did not know that they were dependent, even in cases where suffering went on for forty years or more. Benzodiazepines can cause severe disability even whilst taking them (tolerance withdrawal), during withdrawal and post withdrawal. Disability can occur even at a prescribed low dose.

True “Informed consent” would have entailed the following being explained to me prior to taking these “medications”.

– Benzodiazepines would ultimately take away my mobility, land me needing a zimmer and wheelchair

– Benzodiazepines would cause depression not alleviate anxiety.

-Benzodiazepines would change my personality.

– Benzodiazepines would cause agonising symptoms that no doctor was competent enough to recognise even over a thirteen year timespan.

– Benzodiazepines would lead to the destruction of every important relationship.

– Benzodiazepines would cause me to suffer massive financial loss due to home changes and adaptations.

– Benzodiazepines would render me childlike.

– Benzodiazepines would leave me brain damaged.

– Benzodiazepines would steal my independence.

– Benzodiazepines would cause a myriad of physical symptoms that doctors don’t look for.

– Benzodiazepines would steal my chance to have children.

– Benzodiazepines would steal my chance to have a career.

– that doctors know literally zero about this condition and what they do assume to know is often actively dangerous as well as pejorative.

– Benzodiazepines would leave me bed-bound and in quite literal agony even two months after cessation.

– Benzodiazepines would put me at massive risk of misdiagnosis.

– That once the misdiagnosis and false conclusions have been reached doctors are too proud and often too prejudiced to amend their opinions. That they will not even read the pertinent literature.

– Benzodiazepines would destroy every hope and dream I ever had.

– Benzodiazpines would cause seething pain with which I’d get no assistance let alone compassion

-That I’d face a lifetime of trying to get justice.

– That I’d meet friends in a similar position to me but some of them don’t make it and have died.

All this for a pill that was supposed to “help” me in my career.

This scandal exposes an absolute cess pit of political/medical incompetence and cowardice.

We are all hoping Andy Burnham will uphold his political promises on the 17th November.

At any point in this thirteen years of misprespcribing the GPs could have been aware of the potential of this drug to do this. They then could have referred me to Professor Ashton’s clinic. Her clinic has since shut down.

Three other members of my family were on benzos. This led to the doctors linking symptoms as family traits. We have all led absolutely horrific lives.

The doctors made a mistake. To make a mistake is human. What is not acceptable is doing nothing to rectify that mistake, if not for me, for future potential victims.

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4 thoughts on “What informed consent would have meant for me.

  1. Claire Violet Hanley. You are one very brave and courageous young lady. Thank you for this post and hopefully it will lead the way to government action. My kindest regards to you and upmost respect. Barry. x

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  2. Thank you. I know that Sue and myself will do our very best to convince Andy and others, on the immediate need for constructive action and an urgent Independent Public Inquiry into this national scandal / medical disaster. Barry.

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  3. The GABAergic system (GABA receptors) is an inhibitory system, counteracting the Glutamate system (Glutamate receptors), which is excitatory.

    GABA and Glutamate regulate action potential traffic.

    GABA, an inhibitory neurotransmitter, stops action potentials. (Rest and Digest)

    Glutamate, an excitatory neurotransmitter, starts action potentials or keeps them going. (Fight or Flight)

    Since GABA is inhibitory and Glutamate is excitatory, both neurotransmitters work together to control many processes, including the brain’s overall level of excitation. Under normal conditions these two system are in balance leaning this way or that based on external forces i.e. a bear attack (excitatory system takes over, adrenaline floods the system, muscles tighten, vision and hearing are heightened, mind races, anger takes over etc.) or i.e. bedding down for the night (Inhibitory system takes over, muscle tension decreases, cortisol levels drop, adrenaline levels drop, body prepares for digestion, sex and sleep.).

    Benzodiazepines (as well as alcohol) attach to the GABA-A receptor site of the GABA receptors located on the dendrites of the cell neuron, imitating the natural GABA, signaling to allow a higher than normal flow of Negatively charged chloride Ions to pass though the GABA receptor gate depolarizing the neuron, super-activating the inhibitory system and overly suppressing the Excitatory system. Benzos also force natural GABA to bind tighter and longer to the cell dendrites signaling thru the GABA-A receptor site to also allow more Negatively charged chloride ions to pass through. Result = Very relaxed.

    As a result the body up-regulates the Glutamate receptors (Excitatory system) and releases more Glutamate, which then attaches to the Glutamate receptors allowing more Positively charged Sodium and Potassium Ions through counteracting the Negatively changed Chloride Ions and bringing back the overall balance. If the body has more of a Negative charge it’s relaxed, if more of a Positive charge it’s more alert.

    Where this all goes wrong is when the body and brain, due to being flooded with too many Negatively charged Chloride Ions, start to eliminate a minor yet significant percentage of the GABA receptors on each cell trying to hinder the Chloride ion flow. When this action fails to work the body and brain take further steps of producing new GABA receptors without the GABA-A Benzo/alcohol/GABA attachment site. All is well and good until such time as the newly produced GABA receptors now lacking the GABA-A attachment site outnumber the older receptors which still have it. When this happens those prescribed benzos start to experience interdose withdrawal (Anxiety and Panic while still taking the medication). Doctors will try to solve this issue by prescribing a higher dose, however, very quickly the body responds by producing more GABA receptors without the GABA-A attachment site, plus will continue to absorb older GABA receptors. Soon, Tolerance of the med hits. The meds poops out.

    While the early days of the above disaster are unfolding the Limbic system of the brain, thyroid, pituitary gland, etc. which are directly attached to the GABAergic system start to misfire and odd states of reality, emotion, fear, anxiety, paranoia, memory, balance, aggression states, sexual arousal etc. become more and more pronounced. Moreso once tapering begins and worse still once off the meds. Here are the parts of the Limbic system which start to misfire.

    Amygdala – The Aggression/Emotional Center. Responsible for detecting fear and preparing for emergency events. Fight or flight. Stimulated, it produces feeling of anger, violence, fear, anxiety. Damaged, or medicated, can result in a very mellow state of being, hyperorality, hyper sexuality, disinhibited behavior – ignoring social conventions and engaging in dangerous, reckless behavior. Responsible for fear conditioning, the “associative learning process” where we learn to fear some thing, some place, someone, and/or a social circumstance.

    Hippocampus – Memory and spatial navigation. Forming new and storing memories. Coverts short term memory to long term memory. Responsible for emotional reactions to past memories and events.

    Thalamus – Regulates the body’s voluntary motor control, consciousness and its sleep/wake cycle. It also regulates the senses of sight, sound, taste, touch and the sense of where the person’s body is in space.

    Hypothalamus – Produces hormones which control the production of hormones in the pituitary gland. Hypothalamus function is directly related to overall hormone health. Fight or Flight/Rest and Digest plus body temperature regulation. Responsible for the release of adrenaline via the autonomic nervous system. Hunger, thirst, sleep, sex. The hypothalamus sends danger signals to other parts of the brain and puts them on high alert, preparing to fight or flee. It also tells the pituitary, adrenal and thyroid glands to secrete more hormones to prepare the body for action.

    Cingulate Gyrus – processing emotions and behavior regulation. It also helps to regulate autonomic motor function. Emotional Memory. Regulates pain and emotion. Is particularly involved in driving the body’s conscious response to unpleasant experiences, therefore the avoidance of negative consequences.

    The end result of this, in part, is the Excitatory Glutamate system is no longer being kept in check by the GABAergic system so it’s running wild. This causes overblown and confused states of mind (anxiety, panic, confusion, memory, depression, phobias, etc.), body malfunctions (thyroid, putuitary, tachycardia, automonic nervous system, etc.) and pain becomes the norm (neuropathy, lower back, etc.). To add insult to injury now the patient has to come off the meds, the only substance slowing down the Excitatory system and giving it even more freedom. Unfortunately glutamatergic receptors are not homeostatic like GABA receptors, changes to glutamatergic receptors stick around. Since GABAergic medications or substances no longer work to offset the now raging Excitatory system all one can do is endure it (survive) until such time as new GABA receptors are being created with the GABA-A receptor site. This is what happens during the healing process (Benzodiazepine Withdrawal Syndrome) and is entirely dictated by the level of damage done by the medications and the genetics of the individual which allow how fast the body and brain grow new GABA receptors with the GABA-A attachment site restoring the broken and off balance systems.

    In the meantime, any substances, or states of mind (Stress), which irritates, or boosts the Excitatory Glutamate system must be avoided. Items such as sugar, MSG, caffeine, any GABAergic agent (alcohol, St. John’s Wort, Camomile, 5HTP, KAVA, Z-drugs [Ambien], Phenibut, etc.) and everyday chemicals and foods become landmines as each can cause horrific increases in withdrawal symptoms for the individual, again based on genetics and sensitivities, and since GABA is directly responsible for muscle tone and mass we also experience a wasting, withering physical state. We lose muscle mass, gain (or massively lose) weight and have an immune system which is barely there all while the body and brain are malfunctioning on a level never imagined possible.

    P.S. For ease of understanding, it only takes one day to burn down a 100 year old forest, but a long time to grow it back.. Your GABA-A receptor forest has been burned down by benzo use.. This forest must regrow and it’s takes a long time once GABA agonist use has stopped. During this time, no GABA agonists can be used, most especially alcohol.. Alcohol is kinda sorta like liquid benzos, and benzos kinda sorta like freeze dried alcohol, they are cousins. One cannot replace one with the other or healing will never happen and GABA-A receptor sites will have no reason to regrow. Also, the two highest concentrations of GABA-A receptors are the stomach/gut and brain. Which is why those in recovery have so many issues with food, digestion, etc and mental health issues. There are approx 100 Trillion GABA-A receptor sites on the Human Body.. one for nearly every cell.. Every system is impacted.. Every.. System..

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