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Posted

Having spent over a decade of suffering through accusations that I have been faking all of my symptoms, resulting from what is known as benzodiazepine withdrawal, I now know exactly the causes of all of my own symptoms and I post them here now in the hopes that spreading the information will help to force the system to acknowledge those issues.

 

In my own personal case, only relevant to people suffering from benzodiazepine withdrawal related skin issues, I started acute intermittent porphyria which was misdiagnosed as being purely psychological problems. The evidence of gallstones and rhabdomyolysis (severe muscle damage) dating in that period contradict the psychiatric claims. Certain types of porphyria induce skin photosensitivity to blue light, whether in sunlight or from artificial light and tv screens, so inducing the range of skin problems which we experience.

 

However it is the consequences of the benzodiazepines which I am focusing on with this post. The clue turned out to be in a bout of manic laughter which I experienced after being given lorazepam for the first time. I couldn't control it even though it lasted more than an hour and my arms and legs wouldn't function properly, being forced to crawl on my elbows and knees to m room after being order out of the common room by the psychiatric staff. Uncontrollable laughter, crying, or anger turns out to be evident of something called pseudobulbar affect. https://www.mayoclinic.org/diseases-conditions/pseudobulbar-affect/symptoms-causes/syc-20353737 This is a condition which results from brain injury and is part of a larger condition called pseudobulbar palsy (paralysis) which I subsequently experienced all of the symptoms of. https://my.clevelandclinic.org/health/diseases/pseudobulbar-palsy Although I never experienced the uncontrollable laughter again I did start to experience uncontrollable rage so you won't necessarily experience the same pattern all of the time. That's why psychiatrists refer to it as emotional incontinence; since it's a loss of control of emotions.

 

Soon after learning all of this I learnt that some more of my benzodiazepine withdrawal symptoms fit with Meniere's disease. https://www.mayoclinic.org/diseases-conditions/menieres-disease/symptoms-causes/syc-20374910 This explained the greatly exacerbated tinnitus I, and others, experience.

 

Originally, led by the research into benzodiazepine withdrawal, I followed these conditions back to the brainstem. Dysfunction in different parts of the brainstem lead to these conditions. However they didn't provide a full explanation for all of my symptoms so I kept digging, so learning about posterior reversible encephalopathy syndrome; again explaining some of my symptoms but not giving me a complete picture. https://en.wikipedia.org/wiki/Posterior_reversible_encephalopathy_syndrome

 

However that condition gave me the general location in the brain on which to focus my research on, given that it affects the rear of the brain. The answer for my own condition was that the lorazepam had induced a stroke, likely ischaemic, in my parietal lobe. https://www.stroke.org/-/media/stroke-files/lets-talk-about-stroke/life-after-stroke/ltas_changes-caused-by-stroke.pdf?la=en   Verywellhealth, a commercial site which I can't provide a link for here, has the best explanation for the condition and it helped me to see that what I had experienced as a consequence of my first dose of lorazepam was a bilateral parietal lobe stroke. The sites page on parietal lobe stroke details exact symptoms of strokes in both the left and right side of the parietal lobe as well as common symptoms experienced with both. I have/had symptoms from a stroke on both sides, confusing me, so I checked and found that it's possible to experience a stroke affecting both sides of the lobe.

 

So that's the explanation for my own benzodiazepine withdrawal. I hope that helps others to put together the precise mechanisms which caused their own benzo withdrawal

Prior medications;

sertraline 50mg April

sertraline 100mg May to July 2014 (ceased medication immediately upon occurrence of first thunderclap headache)

lorazepam April 2014 and November 2014 to January 2015 (each time suppressing symptoms of illness until two weeks after cessation of medication)

seroquel November 2014 to January 2015 50mg prior to being raised to 100mg for one day (medication ceased immediately upon occurrence of convulsive seizure)

warfarin 1990 to June 2023

Was instructed to 'cease doing anything healthy' by treating psychiatrist in June 2014 (the psychiatrist stating that belief in disease is the cause of disease and that dietary supplementation encourages people to think there's something wrong with us) so only commenced taking supplements again in June 2023 upon contrary instructions from GP.

 

Current medications;

eliquis since June 2023

Supplements; multivitamin/mineral, zinc, magnesium, calcium/magnesium, vitamin c, vitamin d, spirulina, resveratrol, iron.

  • LotusRising changed the title to Barry2954: Benzodiazepine withdrawal explanation
  • Moderator
Posted

Welcome to SA @Barry2954,

 

I'm sorry you've gone all these years without validation of your symptoms. I think you will find many others here who can related.

 

Porphyria is a new term to me, thank you for passing on this information.

 

How are you doing at the present time?

2003-2009 on and off various SSRI's for short periods

2010-2011 Ativan

2013-2021 ativan 1-1.5mg 10-12x/month

2016 - Effexor 75mg, short-term

2021 Mar -Jun Buspar ADR at high dose, tapered 3 months

Oct 22/21 - Direct switch ativan to clonazepam (don't do this)

Tapered clonaz Oct/21 - Apr/23  - 0mg!

 

"Believe that your tragedies, your losses, your sorrows, your hurt, happened for you, not to you. And I bless the thing that broke you down and cracked you open, because the world needs you open" - Rebecca Campbell

 

*** Disclaimer: Please note, suggestions/comments are based on personal experiences. This is not medical advice. Please consult a knowledgeable practitioner to discuss decisions regarding your medical care *** 

 

                                                             *** Please do not send me PM's ***

Posted

Hi LotusRising,

 

I've been on the forum for around a year or two now, since I had worked out ages ago that the sertraline they had me on had caused thunderclap headaches and five years of adrenergic storming. However it has taken me a long time to search through all of the evidence and medical research, given the physical and cognitive challenges which I experience as a consequence of the psychiatric treatment, to finally work out the other influences on my health/mental health. It was only earlier this year that I was able to learn that my condition fit with benzodiazepine withdrawal/BIND symptoms leading me to find the benzobuddies forum. Over there I was able to search through tons of posts which helped me to gradually put together the full picture which I have now described.

 

Thanks for asking about how I am. As I only finished putting together the sequence of events yesterday and, coincidentally, also received notification that my complaint to the government regarding the psychiatric treatment and the damage done to me had been refused investigation I admit that I have been experience a bout of exacerbation of my condition. I still have avenues to push my fight forward but it has become very obvious that there is a very real cover up of these kind of things here in Australia. Nonetheless, as you know, there's the old saying that knowledge is power so now I just have to work out exactly what the best use of that knowledge is in order to gain leverage for public recognition of the damage which psychiatrists cause.

 

Barry

Prior medications;

sertraline 50mg April

sertraline 100mg May to July 2014 (ceased medication immediately upon occurrence of first thunderclap headache)

lorazepam April 2014 and November 2014 to January 2015 (each time suppressing symptoms of illness until two weeks after cessation of medication)

seroquel November 2014 to January 2015 50mg prior to being raised to 100mg for one day (medication ceased immediately upon occurrence of convulsive seizure)

warfarin 1990 to June 2023

Was instructed to 'cease doing anything healthy' by treating psychiatrist in June 2014 (the psychiatrist stating that belief in disease is the cause of disease and that dietary supplementation encourages people to think there's something wrong with us) so only commenced taking supplements again in June 2023 upon contrary instructions from GP.

 

Current medications;

eliquis since June 2023

Supplements; multivitamin/mineral, zinc, magnesium, calcium/magnesium, vitamin c, vitamin d, spirulina, resveratrol, iron.

Posted

This post contains a condensed explanation for my own, and possibly others, benzodiazepine withdrawal. It operates under the theory that all cases of benzodiazepine withdrawal involve strokes in various parts of the brain, so resulting in the varied symptoms which each person experiences. Since treatment with benzodiazepines and antidepressants are used as medications for treating stroke symptoms I believe that they mask the symptoms of the strokes during treatment, addicting people to them. My apologies that this was meant to be a flowchart however the arrows don't copy.

 

Predisposing factors for stroke; eg porphyria, long term medication with antidepressants and benzodiazepines.

 

 

Triggering medications; eg benzodiazepines, antidepressants, antipsychotics, etc.

 

 

Stroke (possibly expressed by symptoms such as uncontrollable laughter, crying, or anger, physical weakness). The loss of emotional control is called pseudobulbar affect, resulting from brain injury.

 

 

Location of a stroke can then be identified by the pattern of subsequent symptoms and a bit of research online, looking up the symptoms of strokes in the different parts of the brain.

 

 

My own example of this, in order to demonstrate the likely outcome, fits with bilateral parietal lobe stroke (on both sides of the brain in the parietal lobe). This also affects cerebellum and brainstem function beneath it at the rear of the skull.

 

Symptoms of bilateral parietal lobe stroke can include;

 

Right parietal lobe stroke; left side weakness and numbness, inability to see out of lower left quadrant of each eye, spatial disorientation (causing misjudgements in movement and balance), hemispatial neglect (loss of awareness to the left), impulsive, manic, and inappropriate behaviours.

 

Left parietal lobe stroke; right side weakness and numbness, inability to see out of the lower right quadrant of each eye, difficulty with speech and language comprehension, problems with simple mathematics (acalculia), impaired ability to read, write, and learn new information, lack of awareness that a stroke has even occurred (anosognosia), cautious and hesitant behaviours.

 

General symptoms of a parietal lobe stroke; depression, memory problems, chronic fatigue, difficulty sensing with touch, problems with executive function (decision making, planning, self-inhibition, working memory, loss of ability to multitask), loss of motor coordination.

 

General symptoms of a stroke (easily overlooked); eye photosensitivity, loss of ability to lift both arms, blurred speech, weakness or paralysis in parts of the body, loss of sensation on one side, blurred or lost vision, headache, dizziness, loss of balance, unexplained falls, difficulty swallowing, drowsiness, loss of consciousness, deep vein thrombosis, spasticity, incontinence, sleep disturbances, sexual dysfunction, mood and personality changes, heart problems, pneumonia, seizures, neuropathy, self harm, additional strokes.

 

Pseudobulbar palsy; aspiration, drooling, jaw spasms (possibly breaking teeth), difficulty eating, uncontrollable rage, treatment resistant suicidality, onset of respiratory depression

 

Meniere’s disease; tinnitus, vertigo, drop falls, hearing problems, balance problems, etc. Ischaemia is believed to be the cause of Meniere’s disease leading me to the belief that it was most likely an ischaemic stroke that I experienced. I broke many of my teeth because of the jaw spasms associated with pseudobulbar palsy. Drop falls/attacks involve a feeling of dizziness just prior to you dropping to the ground like a puppet with its strings cut. Although strokes aren’t known to induce Meniere’s disease they can induce symptoms which mimic the condition.

 

Stroke symptoms aren’t the same for everyone. A lot of the difference is dependent upon which part of the brain the stroke occurs in and the degree of severity. I didn’t experience a number of the symptoms which I have listed. From what I have read my high testosterone levels likely protected me from the erectile dysfunction which some experience.

 

The reason that evidence of a stroke doesn’t seem to emerge until after treatment ceases, and enough of the benzodiazepines leaves the system, is that benzodiazepines are used as a treatment for strokes; alleviating some of the symptoms. So the benzodiazepines can not only trigger the strokes but also help to hide the evidence of them from the treating physicians. I have read that the usual pattern for benzodiazepine withdrawal is that two or three days after cessation of treatment there is mild decline. By, or at, the ten day mark (though this depends upon the half-life of the particular benzodiazepine) the withdrawal generally peaks. My own peak appeared suddenly though I realise, in hindsight, that I had pushed myself throughout the gradual decline between the first decline and the peak just as the treating psychiatrists had been instructing me to. With this you have to remember that the half-life of the medication affects how soon you experience withdrawal/onset of stroke symptoms.

 

Since strokes can occur at any point in treatment you don’t have to be on benzodiazepines for prolonged periods for withdrawal to commence. Although I was on the medication for three weeks during my initial treatment I now know that the stroke itself occurred the first time that I was given a benzodiazepine. All of the rest of the treatment with benzodiazepines only helped to conceal the evidence of the stroke so that it wasn’t recognised.

 

For people with benzodiazepine withdrawal involving symptoms like skin problems, severe stomach pain, cramps, abdominal cramps, constipation and abdominal bloating, red and/or brown urine (symptomatic of rhabdomyolysis; severe muscle damage), hallucinations, and possibly a range of other symptoms similar to those occurring as a consequence of strokes, I believe that porphyria is the explanation. Exposure to blue light, in sunlight or from artificial lights and screens, triggers the skin photosensitivity in porphyria.

 

Unique benzodiazepine induced neurological dysfunction (BIND) symptoms which can be explained by stroke; pelvic floor dysfunction, immunosuppression, respiratory dysfunction, derealisation, nightmares, hypersensitivity, uncontrollable crying or anger (pseudobulbar affect), metallic taste in mouth.

 

Prior medications;

sertraline 50mg April

sertraline 100mg May to July 2014 (ceased medication immediately upon occurrence of first thunderclap headache)

lorazepam April 2014 and November 2014 to January 2015 (each time suppressing symptoms of illness until two weeks after cessation of medication)

seroquel November 2014 to January 2015 50mg prior to being raised to 100mg for one day (medication ceased immediately upon occurrence of convulsive seizure)

warfarin 1990 to June 2023

Was instructed to 'cease doing anything healthy' by treating psychiatrist in June 2014 (the psychiatrist stating that belief in disease is the cause of disease and that dietary supplementation encourages people to think there's something wrong with us) so only commenced taking supplements again in June 2023 upon contrary instructions from GP.

 

Current medications;

eliquis since June 2023

Supplements; multivitamin/mineral, zinc, magnesium, calcium/magnesium, vitamin c, vitamin d, spirulina, resveratrol, iron.

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