This is what we are dealing with, what our eleven-year-old son, Calvin, is dealing with and it's why we spent twelve hours in the ER in February fighting stubborn seizures. He's been on high doses of benzos (clonazepam and now clobazam) for nearly eight years. In hindsight, my guess is that his seizures were never debilitating or numerous enough to warrant treating him with benzodiazepines when there were many other options, albeit problematic in their own right, to choose from (he was having about a dozen seizures each month, not hundreds in a day, a week or even in a month like some children do.) And though I thought I had educated myself on benzos, it wasn't enough, because I wasn't aware of what you are about to read below. No one told me, and my concerns about their possible side effects were assuaged by his former doctors, which is, perhaps, their custom. I found out about it when it was too late:
Benzodiazepine withdrawal syndrome—often abbreviated to benzo withdrawal—is the cluster of symptoms that emerge when a person who has taken benzodiazepines and has developed a physical dependence undergoes dosage reduction or discontinuation. Development of physical dependence and or addiction and the resulting withdrawal symptoms, some of which may last for years, may result from either drug seeking behaviors or from taking the medication as prescribed. Benzodiazepine withdrawal is characterized by sleep disturbance, irritability, increased tension and anxiety, panic attacks, hand tremor, sweating, difficulty with concentration, confusion and cognitive difficulty, memory problems, dry retching and nausea, weight loss, palpitations, headache, muscular pain and stiffness, a host of perceptual changes, hallucinations, seizures, psychosis, and suicide. Further, these symptoms are notable for the manner in which they wax and wane and vary in severity from day to day or week by week instead of steadily decreasing in a straightforward monotonic manner.
It is a potentially serious condition, and is complex and often protracted in time course. Long-term use, defined as daily use for at least three months, is not desirable because of the associated increased risk of dependence, dose escalation, loss of efficacy, increased risk of accidents and falls, particularly for the elderly, as well as cognitive, neurological, and intellectual impairments.
Benzodiazepine withdrawal can be severe and can provoke life-threatening withdrawal symptoms, such as seizures, particularly with abrupt or over-rapid dosage reduction from high doses or long time users. A severe withdrawal response can nevertheless occur despite gradual dose reduction, or from relatively low doses in short time users, even after a single large dose in animal models. A minority of individuals will experience a protracted withdrawal syndrome whose symptoms may persist at a sub-acute level for months, or years after cessation of benzodiazepines. The likelihood of developing a protracted withdrawal syndrome can be minimized by a slow, gradual reduction in dosage.
Chronic exposure to benzodiazepines causes neural adaptations that counteract the drug's effects, leading to tolerance and dependence. Despite taking a constant therapeutic dose, long-term use of benzodiazepines may lead to the emergence of withdrawal-like symptoms, particularly between doses. When the drug is discontinued or the dosage reduced, withdrawal symptoms may appear and remain until the body reverses the physiological adaptations. These rebound symptoms may be identical to the symptoms for which the drug was initially taken, or may be part of discontinuation symptoms. In severe cases, the withdrawal reaction may exacerbate or resemble serious psychiatric and medical conditions, such as mania, schizophrenia, and, especially at high doses, seizure disorders.
The following symptoms may emerge during gradual or abrupt dosage reduction:
An abrupt or over-rapid discontinuation of benzodiazepines may
result in a more serious and very unpleasant withdrawal syndrome that
may additionally result in:
No child should have to go through this. Thank nature for cannabis, which has seemed to make all of this misery a little bit easier on our sweet little kid.
Excerpts taken from Wikipedia
Benzodiazepine withdrawal syndrome—often abbreviated to benzo withdrawal—is the cluster of symptoms that emerge when a person who has taken benzodiazepines and has developed a physical dependence undergoes dosage reduction or discontinuation. Development of physical dependence and or addiction and the resulting withdrawal symptoms, some of which may last for years, may result from either drug seeking behaviors or from taking the medication as prescribed. Benzodiazepine withdrawal is characterized by sleep disturbance, irritability, increased tension and anxiety, panic attacks, hand tremor, sweating, difficulty with concentration, confusion and cognitive difficulty, memory problems, dry retching and nausea, weight loss, palpitations, headache, muscular pain and stiffness, a host of perceptual changes, hallucinations, seizures, psychosis, and suicide. Further, these symptoms are notable for the manner in which they wax and wane and vary in severity from day to day or week by week instead of steadily decreasing in a straightforward monotonic manner.
It is a potentially serious condition, and is complex and often protracted in time course. Long-term use, defined as daily use for at least three months, is not desirable because of the associated increased risk of dependence, dose escalation, loss of efficacy, increased risk of accidents and falls, particularly for the elderly, as well as cognitive, neurological, and intellectual impairments.
Benzodiazepine withdrawal can be severe and can provoke life-threatening withdrawal symptoms, such as seizures, particularly with abrupt or over-rapid dosage reduction from high doses or long time users. A severe withdrawal response can nevertheless occur despite gradual dose reduction, or from relatively low doses in short time users, even after a single large dose in animal models. A minority of individuals will experience a protracted withdrawal syndrome whose symptoms may persist at a sub-acute level for months, or years after cessation of benzodiazepines. The likelihood of developing a protracted withdrawal syndrome can be minimized by a slow, gradual reduction in dosage.
Chronic exposure to benzodiazepines causes neural adaptations that counteract the drug's effects, leading to tolerance and dependence. Despite taking a constant therapeutic dose, long-term use of benzodiazepines may lead to the emergence of withdrawal-like symptoms, particularly between doses. When the drug is discontinued or the dosage reduced, withdrawal symptoms may appear and remain until the body reverses the physiological adaptations. These rebound symptoms may be identical to the symptoms for which the drug was initially taken, or may be part of discontinuation symptoms. In severe cases, the withdrawal reaction may exacerbate or resemble serious psychiatric and medical conditions, such as mania, schizophrenia, and, especially at high doses, seizure disorders.
The following symptoms may emerge during gradual or abrupt dosage reduction:
Aches and pains
Agitation and restlessness
Akathisia
Anxiety, possible terror and panic attacks
Blurred vision
Chest pain
Depersonalization
Depression (can be severe), possible suicidal ideation
Derealisation (feelings of unreality)
Diarrhoea
Dilated pupils
Dizziness
Double vision
Dry mouth
Dysphoria
Electric shock sensations
Elevation in blood pressure
Fatigue and weakness
Flu-like symptoms
Gastrointestinal problems
Hearing impairment
Headache
Hot and cold spells
Hyperosmia
Hypertension
Hypnagogia-hallucinations
Hypochondriasis
Increased sensitivity to touch
Increased sensitivity to sound
Increased urinary frequency
Indecision
Insomnia
Impaired concentration
Impaired memory and concentration
Loss of appetite and weight loss
Metallic taste
Mild to moderate Aphasia
Mood swings
Muscular spasms, cramps or fasciculations
Nausea and vomiting
Nightmares
Numbness and tingling
Obsessive compulsive disorder
Paraesthesia
Paranoia
Perception that stationary objects are moving
Perspiration
Photophobia
Postural hypotension
REM sleep rebound
Restless legs syndrome
Sounds louder than usual
Stiffness
Taste and smell disturbances
Tachycardia
Tinnitus
Tremor
Visual disturbances
Agitation and restlessness
Akathisia
Anxiety, possible terror and panic attacks
Blurred vision
Chest pain
Depersonalization
Depression (can be severe), possible suicidal ideation
Derealisation (feelings of unreality)
Diarrhoea
Dilated pupils
Dizziness
Double vision
Dry mouth
Dysphoria
Electric shock sensations
Elevation in blood pressure
Fatigue and weakness
Flu-like symptoms
Gastrointestinal problems
Hearing impairment
Headache
Hot and cold spells
Hyperosmia
Hypertension
Hypnagogia-hallucinations
Hypochondriasis
Increased sensitivity to touch
Increased sensitivity to sound
Increased urinary frequency
Indecision
Insomnia
Impaired concentration
Impaired memory and concentration
Loss of appetite and weight loss
Metallic taste
Mild to moderate Aphasia
Mood swings
Muscular spasms, cramps or fasciculations
Nausea and vomiting
Nightmares
Numbness and tingling
Obsessive compulsive disorder
Paraesthesia
Paranoia
Perception that stationary objects are moving
Perspiration
Photophobia
Postural hypotension
REM sleep rebound
Restless legs syndrome
Sounds louder than usual
Stiffness
Taste and smell disturbances
Tachycardia
Tinnitus
Tremor
Visual disturbances
Catatonia, which may result in death
Confusion
Convulsions, which may result in death
Coma (rare)
Delirium tremens
Delusions
Hallucinations
Hyperthermia
Homicide ideations
Mania
Neuroleptic malignant syndrome-like event (rare)
Organic brain syndrome
Post-traumatic stress disorder
Psychosis
Suicidal ideation
Suicide
Urges to shout, throw, break things or harm someone
Violence
Confusion
Convulsions, which may result in death
Coma (rare)
Delirium tremens
Delusions
Hallucinations
Hyperthermia
Homicide ideations
Mania
Neuroleptic malignant syndrome-like event (rare)
Organic brain syndrome
Post-traumatic stress disorder
Psychosis
Suicidal ideation
Suicide
Urges to shout, throw, break things or harm someone
Violence
No child should have to go through this. Thank nature for cannabis, which has seemed to make all of this misery a little bit easier on our sweet little kid.
Excerpts taken from Wikipedia
It makes me want to kill myself, to tell you the truth. I posted a bit of this some months back and the reminder doesn't soften things. I, too, though, am grateful for the THCa and the CBD --
ReplyDeleteomg....No one told you this??? I become more and more convinced that parents (and patients in general) need a well-informed advocate, and probably a short period of pre-decision time any time the treatment suggested has significant risks. In general, that should prevent some of the untoward results that come with anxiety-driven hasty decisions.
ReplyDeleteWe are learning a lot from reading your blog.
I remember first hearing about benzo withdrawal with regards to elderly people who had been given the drug. It's not a good family of drugs in general. I'm sorry your son has to go through this.
ReplyDeleteIt's interesting that the labels you applied to this post do not include anger. I suppose if you let it in, it might consume you, and then where would Calvin be. But to think that the doctors didn't tell you this, that they are so quick to use these drugs...It is infuriating.
ReplyDeleteJulia RR
Two years to wean for me, still have post-withdrawal syndrome at a few months shy of three years. If you include the initial attempt to wean from Klonopin, which had to be done by moving to diazepam for a couple of years, it was more like a six-year process. This is not a drug that should be considered unless there is absolutely no alternative, and treatment is a necessity (in other words, anxiety, PTSD, etc. are probably not good enough reasons, not even Complex PTSD). Very sad that your child had to suffer through this. I managed to have almost all of the symptoms on the list, after a decade on relatively high doses. It really is that bad.
ReplyDeleteHow did you know to try cannibis? Did you find a dr who could help?
ReplyDeletedear unknown, i started researching cannabis strictly to help stop calvin's seizures, not so much to help the withdrawal. in fact, many people recommend getting to seizure freedom by using cannabis BEFORE withdrawing from pharmaceutical drugs. but i had heard that cannabis, namely its constituent cannabidiol, can raise clobazam levels in the blood, so i made the decision to wean the benzo at the same time. for a while now, however, i have tried to stay the cannabis dose while i continue the slow wean of the clobazam. this way i limit the variables so i have a better idea what is doing what. calvin's pediatrician and neurologist are supportive, but i am pretty much doing this on my own since they don't know much about it. i am feeling my way through it with the help of other parents and a little advise from a local DO who prescribes cannabis for a myriad of conditions. i hope this helps.
DeleteChristy. So sorry to read this. Your poor son. Im still healing 2 and a half plus years later. Put on for ptsd after leaving a DV relationship. Docs kept me on very high doses for 11 years. Took myself off over a 4 month period. Still not back to life as I knew it. But am hopeful to have survived and even worse nightmare than the domestic violence. Hope that Calvin is doing better. I know it's a very long process
Delete