CAVERNOMAS
Since moving from London to Lincolnshire it has been a disaster. No-one is giving any answers about the discharge note that points only to physical health. Because of the way scans have been refused and Neurologist appointments cancelled I decided to book a private scan as I was quite suspicious. Elizabeth is on a very high dosage of clopixol depot administered fortnightly and on top of that they are now giving procyclidine for Parkinsons off label. She constantly says she does not feel well and that is understandable as she is subject to constant rapid tranquilisations. Imagine being pinned up against a wall and some hospitals such as Elysium give face down restraint which is life threatening.
When I turned up for an important meeting on Monday 2nd October I was told an emergency ambulance had been called again. It was 2.00 pm when I came onto the ward. There were about 5 people in her bedroom. I did not pick up the message covid was on the ward but too late by this time. I was for the first time in Elizabeth’s room and there were five others including the RC. As witnessed myself on one previous occasion Elizabeth was in an inconsolable state. Rolling on and off the bed, shaking with tremors all over her body and her skin felt cold and clammy. The first thing they do is inject her known as “rapid tranquilisation” (a chemical straightjacket). They were waiting for an ambulance to take her to A&E at Lincoln County Hospital. I had to go into the meeting where I met with two Directors of Nursing for the Trust and ICB. It was around about 5.00 pm when the meeting ended and I went over to A&E and Elizabeth was still in an ongoing state of distress which reminded me of one other occasion when she had Akathisia. I thought it might be NMS she was suffering. It could not have been a worse time to be in A&E with a strike on. There were two healthcare assistants with Elizabeth but when they had to go back to the ward two men took over standing just outside the room. It was not until about 7.00 pm that the main consultant came to see Elizabeth. It took her until 7.30pm to calm down and when I have asked she said she could hardly remember anything other than being strapped to a bed in the ambulance. The episodes I had hoped had subsided but were a frequent occurrence at previous hospital Ash Villa and at Cygnet Durham which always resulted in rapid tranquilisation. Pulse rate high at 138 /157. You could not speak or communicate with Elizabeth during the episode. After briefly seeing the Consultant she was then sent back to the ward in a wheelchair. It was quite upsetting as this has been going on a while now and I do not like the fact she is being injected as it is life threatening. Never before coming to Lincolnshire did she have these episodes but we have both been treated like criminals.
I have scientific data that the clinicians are ignoring. I have two papers (from impeccable sources) of major significance in showing that a non-psychiatric intervention may relieve some of the pathophysiological causes of the psychosis they call schizophrenia. If interventions were targeted at immune dysfunctions and inflammatory markers a whole new approach could be taken that did not involve a lifetime of incarceration and neuroleptic drugging.
An early intervention targeted at these two physiological causes/contributors to psychosis might eliminate most patients from this hideous ritual that has been going on for many decades.
It is eminently probable that Elizabeth, when she first presented with psychotic symptoms had an injury or infection causing inflammation, that had it been properly treated would have been fully recovered from.
That clinicians will not listen to this is unfathomable. Literally millions of people may have been subjected to psycho pharmaceutical treatment unnecessarily resulting in untold levels of suffering for them and their families. How shocking this is.
When the drug companies got control of our health service the future became very bleak for patients. Drug companies don’t want cures they want sales. Keeping patients on drugs for life makes them fortunes. Cured well patients do not generate profits for drug companies and private sector mental health provision making fortunes from the NHS.
The orthodox medical obsession with so called chemical imbalances ‘treated’ with neuroleptics completely blocks out numerous pathophysiological contributing factors and possibly even causes of psychosis. It is virtually medieval in its approach and shares more in common with cult beliefs than with science.
Ignoring pathophysiological symptoms and markers is utterly absurd in any diagnostic system let alone the potential for consequences of ignoring them when administering medication.
Refusing Elizabeth and other patients access to properly conducted tests and analysis is a scandal on a huge scale. But of course they find it much easier to label people with catch-all and non specific stigmatising terms like schizophrenia.
It is entirely possible that Elizabeth suffered a decrease in cerebral glucose metabolism at the time she was originally wrongly diagnosed with schizophrenia.
That has been shown in the medial temporal lobe and increases have been seen in the subgenual anterior cingulate cortex in conjunction with reductions in mesolimbic connectivity, following an induced inflammatory response. Trauma can induce this inflammatory response.
It is further possible that millions of young people have been so diagnosed because the NHS is obsessed with focussing solely on the psychiatric symptoms while positively avoiding pathophysiological and trauma induced causes of psychosis.
The mesolimbic system is precisely where dopaminergic activity is taking place and inflammation will obviously interfere with that, causing manifestations of psychosis. If the inflammation had been addressed with anti-inflammatory drugs at onset a lifetime of psychosis and consequent drugging could have been avoided.
I suspect that Elizabeth will express C-reactive proteins and interleukin 6, just as she was shown to be a poor metaboliser. Both of these are a result of her genotype and her treatment should have been based on these. Undoubtedly the NHS will refuse to test her for these markers.
Instead they cling on to the outdated and hideous system of labelling people with schizophrenia and dosing them with anti-psychotic medication.
If any of the scans show these effects it would be seriously negligent not to investigate them further. At the very least anti-inflammatory drugs should be used to reduce the inflammation. Even over the counter NSAIDS would have some effect on this.
Steroids are used in more serious cases.
It is well established that brain inflammation is caused by neuroleptics. The medical literature, including top high impact journals is full of studies. Some of the drug companies claim that the drugs actually reduce inflammation but the evidence here is highly questionable.
If grey and white matter is inflamed it will interfere with the brain’s system of removing waste proteins (Glymphatic system) That will cause nerve atrophy by blocking neural signalling and depositing protein waste in the form of amyloid beta plaques and Tau tangles both inside the cell and between cells in the synapse. That causes failing cognition, memory and cell death in the brain. Inflammation in the brain can breach the blood brain barrier endothelial cells allowing in both toxins and pathogens that would otherwise be stopped by the BBB. That can cause infections and toxicity leading to brain damage. If the doctors ignore that they are either negligent or stupid or both.
As the sulcus closes, the Cerebrospinal Fluid is pushed out of the sulcus. Since the CSF is part of the Glymphatic system responsible for clearing the brain of damaged protein fragments these can build up and cause atrophy in grey matter. Amyloid beta proteins and tau protein tangles cause brain atrophy leading to neurodegenerative disorders.
• In the human body waste matter is cleared from the system to lymph nodes
• Where proteins are filtered out and destroyed
• The more active the organ, the more vessels there are to evacuate the waste proteins
• Except in the most active organ of all, the Brain.
• The brain has no lymphatic vessels
• It was originally believed that was products in the brain were destroyed in situ
• Accumulating proteins such as Aβ and tau are identified as major factors in Alzheimer’s Disease
• Nedergaard’s research observed that the brain has its own mechanism for clearing out waste
• Ten years after Nedergaad’s work this is now known as the Glymphatic System
• Cerebrospinal fluid is a liquid that acts as a cushion protecting the brain from direct contact with the skull. Closed sulci push CSF away possibly leading to less cushioning
• The fluid has been observed ‘washing’ through the brain induced by the pulsing of arteries as the heart beats
• The fluid was picking up waste proteins and transporting it to the lymph nodes for destruction
• This involves brain cells known as the glia
• Giving a new avenue for potential treatments by improving the flow of glymphatic fluid
• A normally functioning brain will flush out Aβ and tau proteins
• As a person gets older this process becomes less efficient
• Leaving potentially harmful proteins behind where they may accumulate
• Accumulating Aβ proteins can reach a tipping point causing tau to spread throughout the brain
• As the accumulation increase the axons and synapses are compromised
• And cognitive function, especially memory declines
• Unlike the lymph system the glymphatic system only operates during sleep
• The system is disabled during waking hours
• It is most active during deep sleep, initiated by slow-brain wave activity
• Lack of sleep in early life as associated with increased risk of Alzheimer’s
• Aβ can increase noticeably even following short episodes of sleep deprivation
Before leaving I wanted to pick up the Rapid Tranquilisation log from Castle Ward but this was not granted so I wrote an email to Sarah Connery CEO:
“I also look forward to the CP11 on RT for LPFT and logs of RT during and thereafter from Ash Villa.”
I thought I might as well get the Policy document CP11 on Rapid tranquilisation as I had been reading very carefully another Trust’s Policy protocol document CP11. I then decided to ask for all the rapid tranquilisation logs to date. I would recommend all carers whose relatives are subject to rapid tranquilisation get the Policy document of their Trust CP11. I could not find this so I have had to ask for it.
In the short term it will seriously impact on cognitive function and that should have been taken into account when they conducted the capacity assessment. Patients treated for sleep problems with CBT-1 experience increased cognitive ability while those treated with sedatives or anxiolytics such as benzos experience their cognitive function deteriorating further.
| Blood Oxygen Level | Interpretation |
| 96 to 100% | Normal range |
| 93 to 95% | Borderline low |
| 89 to 92% | Low |
| 88% or lower | Dangerously low |
The patient should be examined 30 minutes after IM is administered.
If respiratory rate falls by 10 points following IM administration of drugs or the blood oxygen levels (SpO2) fall below 90% the patient should be given oxygen.
Symptoms of mild cerebral hypoxia include:
- Change in attention (inattentiveness)
- Poor judgment
- Speech disorder
- Uncoordinated movement
Brain cells are very sensitive to a lack of oxygen. Some brain cells start dying less than 5 minutes after their oxygen supply disappears. As a result, brain hypoxia can rapidly cause severe brain damage or death.
Lack of sleep can cause brain inflammation and where that occurs the drug metabolism will be affected adversely.
It is a failing of mental health providers that they do not pay sufficient (if any) attention to patient sleep. Conditions on wards are not conducive to proper sleep with lights on and severe disruption throughout the night, including forced medication.
Doping patients up with Benzodiazepines does not provide the proper circadian sleep they require and contributes to brain dysfunctions exacerbating underlying medical conditions.
High levels of neutrophils have been associated with schizophrenia and there are methods of treating them as you will see below. I consider it highly unlikely that Elizabeth has been tested for neutrophil count so that is another test she might need.
I have the paper on neutrophils and schizophrenia.
Plasma levels of systemic inflammatory markers (fibrinogen, albumin, white blood cell count, von Willebrand factor, and Factor VIII) need assessing.
Plasma fibrinogen is considered as a positive mediator between mental stress and cardiovascular disease because it is an acute-phase protein released in response to mental stress and a coagulation factor.
Mental stress can increase fibrinogen and increase the risk of cardiac disease via upregulated coagulation (Blood clots)
This assessment can be done by a routine blood test.
On a positive note after 2 years finally we have this meeting. The CTR originally refused is now being granted. Because I dispute every capacity assessment done for court purposes they offered to arrange an independent one. I believe they should always be done independently however I am not sure I can trust them to choose and I would want to choose in the circumstances. I did say was it necessary because I needed to see two other capacity assessments done by completely independent assessors of the CoP.
I mentioned about leave. Every change of doctor meant things either were ignored or went back to scratch. A HCA told me that S17 leave was granted meaning escorted ground leave but I disputed that this was leave. Leave is when someone is granted time with their families and that has not happened in a long while.
Ward Round took place on Wednesday on Microsoft Teams and went better than the last one I could not get into. The RC kept saying “you have schizophrenia” Elizabeth just sat there – normally she would say “no I am autistic”. However, I was the one who spoke up as I had private scans done when they were refused by a former doctor of LPFT who even carried out research into the Limbic System. I said “my daughter’s condition is physical” I mentioned she needed to see a Neurologist, an Endocrinologist and an Immunologist. He said about a referral to a Neurologist but because so many appointments were cancelled and scans refused I am not leaving anything to chance. I have contacted today a leading expert in Neurology as I want a fair examination and not by a neurologist who may also be a psychiatrist as even with the evidence of the scans Elizabeth would not be treated fairly. Inflammation of the brain requires a very different kind of treatment to what Elizabeth is having at the moment. It is hard to trust anyone in the circumstances as noone likes to be proved wrong and from what I can see there has been nothing but attempts to ignore or brush aside.
Take the Sebaceous cyst for example on Elizabeth’s head. I as a mother was not convinced when they said it was benign.
A Sebaceous cyst is well associated with the long-term use of neuroleptic medications.
That also needs a medical appraisal done. This is not simply a cosmetic ADR but indicates a potential endocrine disorder linked to her inability to metabolise drugs.
Incidentally this has also been known about for years. Sebaceous cysts are NOT benign. For one thing they may mask subdural lesions and inflammation making them difficult to define.
Just as I thought! – every time I have told the doctors – so many of them that I have had endocrine tests done for Elizabeth and they have ignored this and so I asked at ward round for an appointment/referral as I have already proven endocrine dysfunction. In fact it was Dr Moncrieff who recommended seeing an Endocrinologist and not any one of the many doctors involved in Elizabeth’s case
Cavernomas are vascular malformations that have been associated with psychosis as well, especially in the setting of haemorrhagic transformation.
That dark patch on Elizabeth’s temporal lobe looks suspiciously like one.
The cavernoma is a cluster of blood vessels that can leak into the brain and in that respect is definitely a lesion. These lesions are associated with immunological problems and inflammation (see attached paper) The amount of damage it can do is largely dependent on where in the brain it is and would be expected to cause problems with neurotransmitter signalling and possibly neuroleptic efficacy.
Cavernomas are not malignant but can be disabling and lesions in the temporal lobe can cause psychiatric symptoms, especially violent mood swings. Neuroleptic & antipsychotics medication will not effectively treat cavernomas. It appears they are often overlooked in favour of psychiatric diagnosis.
This paper is very interesting too. Sayadnasiri M., Fadai F. Multiple cavernous angiomas associated with psychotic symptoms: a case report. Zahedan Journal of Research in Medical Sciences . 2016;18 doi: 10.17795/zjrms-3479.
The attached article is about a young man presenting with psychosis and aggression. He was found to have two cavernomas and you can see them on the scans in the article.
It is possible that the reason why cavernomas are relatively rare is that the misdiagnosis of schizophrenia is masking the actual incidence in the population. Since psychiatrists are so reluctant to allow patients to have brain scans many of these may be going undetected.
Clearly proper examination by a neurologist to confirm it is indeed a cavernoma or any other type of lesion is needed.
Neuroleptic medication will not treat these lesions and could potentially make them worse since it can cause inflammation.
Limbic encephalitis is an inflammatory process mediated by antibodies that typically involve the limbic system, although it can also affect the white matter in other areas of the brain, the brainstem, or the basal ganglia. It can have paraneoplastic or non-neoplastic origins, paraneoplastic encephalitis showing little response to immunotherapy(4). Clinical findings range from alterations in short-term memory to alterations in mental state and can include psychiatric symptoms.
I have placed below a brain scan done roughly in the same position of that of Elizabeth’s which I refer to as a comparator
Note the similarities between the brain scan on the right of the picture with Elizabeth’s on the left. Although the comparator picture is taken from higher up in the skull at eye level and Elizabeth’s is in the area of the nasal sinuses below the eyes you will see the same pattern on the left. The comparator shows a cavernoma, a definite lesion.
On Elizabeth’s scan you can see the odd linear anomaly that does not show on the comparator but the dark patch on Elizabeth’s scan is directly below the position of the cavernoma on the comparator.
I have just been reading to Elizabeth this blog for her approval and she wishes to let everyone know that she is “slowly recovering”. The thing she enjoyed most today was making pizzas. Oh and another good thing is that I have been granted two hours leave that does not have to be confined to hospital and its grounds. That is good news as Lincoln is a very nice place and eventually I would like to show Elizabeth some of the sights especially the Cathedral.
Psychiatric Abuse UK 