Benzo Withdrawal Syndrome and More Ragging on Some Neurologists

My friend Christy Shake posted this on her blog Calvin's Story, but it bears repeating. It's also especially effective given the amount of condescension and mockery we endured last week during the neurology conference. I have a vague, unsettled memory of one of the docs claiming that some mothers with kids on CBD had neglected to mention that their children had explosive diarrhea for a week when the trial of synthetic CBD started. The fact that they are using gigantic amounts of the stuff for the testing aside, her statement that mothers aren't to be trusted in what they report was what incensed those of us dealing with the following shit (Sophie has been on this particular benzo, Onfi, for over eight years. She's been on and off of various benzos her ENTIRE LIFE since she was an infant of three months).


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

An abrupt or over-rapid discontinuation of benzodiazepines may result in a more serious and very unpleasant withdrawal syndrome that may additionally result in:

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

excerpts taken from Wikipedia but most is on white drug insert

It bears repeating to say that my child and thousands like her have been on little tested combinations of drugs with no success controlling their seizures for as long as pharmaceuticals have been around. There is little recognition of this FACT. Holding cannabis up to these phantom-like exacting standards is not just BULLSHIT, it's unethical and borders on criminal.

Full Moons and Fires and Seizures, Oh My! Oh, and Earthquakes!

Downtown Los Angeles, 1/16/14
photo via thewire.sheknows.com

No sooner had the ink dried on the two-week proclamation of Sophie being seizure-free for two entire weeks, then I received a text from her teacher at school that one occurred. That was Wednesday afternoon, and yesterday was a bust -- many seizures all day long, the subsequent clamminess and then the combined out-of-it-ness and agitation.

Small sigh.

The sigh is small because Sophie went two weeks without a seizure! I'm going to attribute the breakthroughs to the full moon, the fires burning just outside Los Angeles (the picture above, although not mine, is what most of us saw all day yesterday and then,late in the afternoon, smelled), the incredibly dry air, Santa Ana winds, small earthquakes (so far) and Oliver's Cold That Sophie Might Be Catching.

Medium sigh.

In the meantime, my record of meeting bloggers in person and adoring them stands as perfect. Christy Shake of Calvin's Story was in town and stayed with us last night. She is as lovely in person as she is a beautiful writer online, and I felt as if we were old friends. We talked and talked, ate a delicious dinner at a Korean small plate place in Beverly Hills -- tiny Brussels sprouts, roasted with tiny dried prunes, zucchini and peppers, a seafood pancake with salty dipping sauce, a salad of avocado, tiny figs, crispy rice and pomegranate dressing, and whole grain pot stickers with chicken -- and then talked some more back at our house before going to sleep. I am so grateful for these online relationships that morph into real-life ones.

Do you need a sweet laugh?  Read John Hodgman's New Yorker essay"Downton Abbey" With Cats  for a grand one.

We sit here, stranded, 'tho we're all doing our best to deny it

At risk of same old, same old, all I've got this morning, Monday-style, is a desire to climb in a car with my friend Christy Shake of Calvin's Story and if not fly over the desert to oblivion, then over the sea to Bora Bora and never come back. There's nothing wrong in particular same old, same old, and visions of Bora Bora  never 'scape my mind. There's a song in there somewhere, but I think Bob Dylan already wrote it. But these visions ... they make it all seem so cruel.

I think I've included enough cultural references in three sentences; I have oodles of laundry to do and children in foster care to tend. Reader, what are you up to this Monday morning?

Level the Playing Field

Here are some statistics from the Centers of Disease Control and the National Institutes for Health. Notice the disparities.


Disease                      NIH funding       Americans      Annual                
                                    2012                      afflicted           deaths
                                   (in millions)

Alzheimer's                 $498                    5.4 million         83,000

Epilepsy                       $153                     3.2 million        50,000

Breast Cancer            $712                     200K*                41,000
Parkinson's Disease$151                     1 million                15,000
Multiple Sclerosis      $121                    400K                     2,400


**annual new cases on invasive breast cancer equal to annual number of new epilepsy cases

My friend, the writer Christy Shake of calvin's story is working tirelessly on behalf of children with epilepsy and their families. She would love for you to sit up and take notice of the facts outlined above and the dire need for funding to help eradicate this disease that so adversely affects her son Calvin and my daughter Sophie, two among millions who have epilepsy. Donate to cure epilepsy now here.

Christy, Calvin, Anne Lamott and me, sitting on the dock of the bay

Sitting in the morning sun, here at my desk, on the dock of the bay, seemingly watching the tide roll away, wasting tiiiiiiiime,  I clicked on my friend Christy's newest post on her blog Calvin's Story, a repost that I was surprised to see she'd dedicated to me. Christy is one of the beautiful women I've met online who has a child with severe epilepsy, and not only is she a kickass mother and a kindred soul, she's a soaring writer. Thank you, Christy, for this beautiful tribute.

The weird thing is that just last night, I went downtown to my beloved Los Angeles Public Library and listened  to Anne Lamott in conversation with Father Gregory Boyle, and that woman's funny, wise words are still zinging about my head this afternoon as I watch the tide roll away. I'm thinking about paradox, about the ability to hold conflicting ideas and emotions at once, about riding the hated roller coaster with joy and exhilaration, about look like nothing's gonna change and everything still remains the same and then opening a blog post with words that sustain me.