Years ago I promised to write a book for the benzo community. I asked people to share their symptoms with me so we’d have an alphabetical list of Benzo Withdrawal symptoms. I received a lot of replies. I complied and shared the list, but the book never got finished. Eighty pages into it, I hit an emotional wall. Writing about withdrawal in such depth was too much for my then still healing nervous system. Now, ten years benzo free, happy and healthy, I am finally fulfilling my promise. I am writing the book. I’m glad that I didn’t finish writing the book years ago—I’ve learned so much more about the brain, nervous system, and what determines our health—our gut. I’ve got so much more to share. I’m very excited.
Since you have waited patiently, here is the first draft of the first chapter. I hope it resonates with you.
Keep healing!
1. FIRST CAME SURPRISE
It’s not the type of surprise that you want. There are no excited smiles or gales of gleeful laughter. There is, instead, the feeling of disbelief when you find out that the pill you are taking, as prescribed by the doctor you trust, is slowly but surely, damaging your brain and nervous system. It’s a punch to the gut, to say the least. This is how most of us who have been harmed by our prescribed dose of a benzodiazepine feel. We are stunned to learn we have a chemical brain injury. Our GABA (gamma-aminobutyric acid) receptors are damaged, causing our brain and nervous system to be unable to regulate the communication between the brain and cells and inhibit neuronal activity. (That translates to a whole lot of suffering.)
Years ago, my doctor pushed a prescription across the table to me and said, “You have a bad brain. Without medication, you won’t be able to function.” He said that I needed a benzo the same way a person with diabetes needed insulin (perhaps you’ve heard the same analogy?) He was the one with the diploma on the wall, the MD initials behind his name. Who was I to doubt him?
I was in my mid-thirties, the mother of four little children, going through an emotionally traumatic divorce. I was desperate for my anxiety and panic attacks to stop, so I dutifully swallowed the pills—year after year after year. And every year, I became less and less healthy, plagued by mysterious symptoms I’d never had before.
Many of us discover the truth about benzos when we become tolerant of our current dose. That was what was happening to me, tolerance withdrawal. We begin having strange and frightening withdrawal symptoms while on the drug. Most doctors and therapists are uneducated about benzos’ actual dangers, so we rarely get a proper diagnosis for our failing health. Instead, we are told we have chronic fatigue, fibromyalgia, Lyme, MS, a new or a worsening psychiatric disorder. Sometimes, we are told that we are making up our symptoms for attention. One doctor looked me in the eyes and said, “There is nothing wrong with you except for being a neurotic housewife.” I left his office ashamed but still sick.
As my health declined further, I saw cardiologists, neurologists, GI specialists, naturopaths, and chiropractors, hoping to find a reason for my bizarre symptoms. Not one doctor ever connected the dots and pointed out that the Clonazepam I took was the reason for my failing health, even though my daily dose was noted on my medical chart.
It took a Google search of my symptoms to inform me that I had been damaged by the benzo I had taken for so many years. (Sadly, benzodiazepines can hurt some people’s brain and nervous system in a matter of days.) To say I was upset would be an understatement. So many questions swirled through my mind. How can a drug that can damage someone’s brain be legal? How can doctors not know that the damage is taking place? Why isn’t something being done to warn people? And why aren’t doctors being taught the truth?
If you are currently taking a benzodiazepine, you may want to consider educating yourself about the dangers of long-term use and the safest way to taper off and heal. If you are already tapering or off and experiencing symptoms, I hope that this little book helps comfort you and helps you to stack the cards in your favor of healing as quickly as possible from the damage the benzo has caused.
Benzodiazepines harm about half the people who take them. The assumption is that a DNA anomaly allows the drug to harm some but not others. Some are injured in a few days, even on a low dose. To date, the DNA difference is unknown.
The following list is common benzodiazepine injury syndrome symptoms, compiled over the years by the benzo community. Symptoms can appear while someone is on the drug (tolerance withdrawal), in-between doses (inter-dose withdrawal), or cessation of the drug (acute, post-acute, and protracted withdrawal). Some people have only a few symptoms, while others may have many. Symptoms can wax and wane and come and go. Some of the symptoms may be similar to the ones the drug treats. This does not mean that pre-existing symptoms have returned. This list, although lengthy, is not the definitive list of possible symptoms. New ones are reported as more people experience withdrawing and healing from their benzodiazepine.
Abdominal cramps
Abdominal pain
Acid reflux
Acrophobia
Aggression
Agitation
Agoraphobia
Air hunger
Akathisia
Allergies
Amnesia
Anger
Anhedonia
Anthophobia
Anxiety
Apathy
Ataxia
Back pain
Balance issues
Benzo belly
Blepharospasm
Blurry vision
Body aches
Body feels frozen
Bone pain
Brain zaps
Bruxism
Burning sensations
Cardiovascular issues
Catatonia
Changes in personality
Chemical sensitivity
Chest pain (can mimic heart attack)
Choking sensation
Cognitive issues
Cold intolerance
Concentration issues
Confusion
Constipation
Convulsions
Cough
Cranial tightness
Crying spells
Delirium
Depersonalization
Depression
Derealization
Diarrhea
Dilated pupils
Disoriented
Distorted perception
Dizziness
Drugged sensation
Dysphagia
Dysphasia
Dysphoria
Dyspnea
Edema (especially of ankles and face)
Electrical sensations
Encopresis
Excitability
Existential angst
Eye dryness
Fatigue
Fear
Flashbacks
Flu-like symptoms
Food intolerance
Formication
Gait abnormalities
Gastrointestinal issues
Guilt
Hair loss
Hallucinations
Hay-fever
Head pressure
Head sensations (tight band around the head)
Heartburn
Heat intolerance
Heightened senses
Homicidal ideation
Hopelessness
Hydrophobia
Hyperactive
Hypersensitive to stimuli
Hypertension
Hyperventilation
Hypnagogia
Hypotension
Hysterical
Impending doom
Impotence
Inability to handle stress
Inappropriate laughter
Incontinence
Inner vibration
Insomnia
Intrusive thoughts
Irrational fears
Irregular breathing
Irregular heartbeat
Irritation
Jumpiness
Lethargic
Leukonychia
Libido impotence
Lightheadedness
Looping thoughts
Low self-esteem
Lucid dreaming
Malabsorption
Mania
Memory impairment
Menstrual irregularities
Metallic taste
Migraines
Monophobia
Mood swings
Morbid thoughts
Muscle pain
Muscle spasms
Myoclonic jerks
Nail Pain
Nausea and vomiting
Neck pain
Negative thinking
Nerve pain (hitting non-specific areas of the body randomly but for short bursts)
Nerves, All nerves firing off
Nervousness
Neuralgia
Neuroleptic malignant syndrome-like event
Neurological problems (topical nerve anesthesia)
Neuropathy
New allergies
Night apnea
Night sweats, Rashes
Night terrors
Nightmares, vivid or weird dreams
No feelings of fun or laughter
Nosebleeds
Not knowing who you are
Numb feet
Numbed emotions
Numbness and tingling in the face
Numbness and tingling in feet
Numbness and tingling in hands
Numbness in any part of the body
Numbness in arms
Numbness in face and left side
Numbness in fingers
Numbness in head
Numbness in lip and tongue
Obsessions or obsessional repetitive thinking
Obsessive and compulsive thinking (OCD)
Obsessive-compulsive disorder
Obsessive thoughts
Occasional right eye pain
Oesophagitis
Organic brain syndrome
Outbursts of rage or aggression
Overwhelmed feeling
An overwhelming feeling that you are going to die
Pacing
Pain in eyes
Pain in hands and feet
Pain in previous surgical sites
Painful scalp
Pains in neck and shoulders
Panic attacks
Papular and maculopapular rashes
Paresthesia (Pins and needles)
Paresthesia (numbing, burning, and tingling; pins and needles)
Paresthesia (numbness, tingling)
Paralexia – the mixing up of words in texts.
Paranoia
Paresthesia – “A thousand needles.”
Perceptual disturbances and distortions
Peripheral nervous system issues
Persistent, unpleasant memories
Peristalsis abnormalities
Personality changes
Perspiration
Perspiring, night sweats
Phobias(hydrophobia, agoraphobia, monophobia, acrophobia, anthropophobia, and others)
Photophobia
Photosensitivity
Pins and needles
Poor concentration
Poor judgment
Poor memory
Poor muscle control
Poor short-term memory
Poor sleep
Post Traumatic Stress Disorder
Postural hypertension
Pounding in my head
Premature ventricular contractions (irregular heartbeats)
Pressure in head
Pressure in the inner ear and outer ear
Problems with vision
Prostate pain
Pseudo-Multiple sclerosis (Medically documented cases of misdiagnosed MS who have recovered after withdrawal)
Psychomotor impairment
Psychosis
Psychotic symptoms (usually transient and confined to rapid withdrawal)
Pulsating all over my body(also visible)
Pulsating in the right temporal area, primarily upon exertion
Pulse thudding
Racing heart
Racing thoughts
Rage
Rapid changes in body temperature
Rapid mood changes
Rapid mood fluctuations
Rapid weight loss
Rash under brows
Rashes, blotches
Rebound REM sleep
Rectal bleeding/burning
Red burning eyes
Reduced alertness
Reduced blood pressure
Reduced or increased appetite
Reduced stress tolerance
Resignation – “what is the point of quitting?”
Respiratory Breathlessness
Restless legs syndrome
Restless legs, arms
Restlessness
Rigidness and jerks
Room spinning
Scalp burning
Seeing spots before the eyes
Seizures (fits) (Almost unknown if people reduce gradually, more common for people using high doses who stop suddenly)
Sense of instability- the ground seems to move beneath one’s feet.
Sensitive feelings
Sensitive or painful teeth
Sensitive to light and stress
Sensitive to loud noises
Sensitive to music
Sensitivity to smells
Sensory disruption
Severe body pain
Severe fatigue
Severe head pain
Severe headaches
Severe muscle rigidity
Severe pain in the stomach
Sexual Impotence
Sexual problems (changes in libido)
Shaking
Shallow breathing
Shivering, feelings of extremely cold or hot
Short-term memory impairment
Shoulder pain
Sinus pain
Sinusitis
Skin burning patches
Skin insensitivity
Skin itching, tingling, burning
Skin problems (dryness, itchiness, rashes, hives, slow healing, burning)
Skin sensitivity
Skipping heartbeats
Sleep disorders
Sleep disturbances
Sleep paralysis
Sleep problems
Slow heart rate
Slow thinking processes
Slurred speech
Soapy taste in the mouth
Sore eyes
Sore gums
Sore mouth
Sore tongue and throat
Sore tongue and thrush
Sore, itchy eyes
Spaciness
Speech difficulty
Spine (burning sensation)
Stabbing pains in limbs
Stiff arms and legs
Stiff muscles
Stiffness in joints
Stiffness in back
Stinging pain
Stomach and bowel problems
Stomach cramps
Stomach upsets
Sudden sadness
Suicidal feelings (see a doctor if you feel you will act on them)
Suicidal ideations
Suicidal thoughts
Suicide attempts
Sweating
Swelling-bloating
Swollen breasts
Swollen eyes
Swollen vulva
Tachycardia
Taste and smell disturbances
Tearing eyes
Teeth chattering
Teeth pain
Tension
Tension Headache
Tension in neck
Terror
Thinking you are mentally ill
Thirst
Throat issues (tightness)
Throbbing legs
Throbbing pains
Thrush-like symptoms
Thyroid disturbances
Thyroid issues, erratic testing results
Tight, achy muscles
Tight jaw and temple
Tight muscles in the leg
Tight muscles in the neck and shoulders
Tightness in the chest
Tightness in the head
Tingling on scalp
Tingling sensations
Tingling skin
Tinnitus (ear buzzing, popping, ringing, hissing)
Tiny pupils
Tiredness
Tolerance
Too much saliva
Toothache
Trembling and shaking
Tremor or feeling of inner vibration
Twilight sleep
Twitching Muscles (nearly everywhere)
Ulcers in mouth
Uncharacteristic behavior such as shoplifting
Uncontrolled eye movement
Unusually sensitive
Unwarranted feelings of guilt
Urges to shout, throw, break things, or harm someone
Urinary problems (continence or incontinence)
Urinary retention
Vaginal discharge
Vasovagal attacks
Vertigo
Very cold, especially hands and feet
Very oily skin and hair
Violence
Visual distortions preceding a migraine
Visual Disturbances – blurred vision, vivid 3D vision, floaters, changing focus, double vision
Visual hallucinations
Vivid dreams
Vivid vision
Vocabulary, loss of skills
Voice weak
Void of normal emotions
Vomiting
Waking early
Water retention
Waves of pain
Weakness, “jelly legs.”
Weight gain – weight loss (this may be quite rapid)
Weird thinking
White blood count, elevated
Wired feeling
Worsening of allergies
Xeroderma (dry skin)
Yellow eyes or skin
Thank You for this highly informative book. After all the
new benzo prescriptions that were given by unthinking doctors during the pandemic, we are really going to need this.
Thank you, Jennifer. I look forward to reading the book.💕
Really looking forward to your book Jenn. Any idea when it might be finished ? Thank you for sharing with us all x
I’m working on it daily. I’ll let everyone know when it’s ready. 🙂
Dear Dr. Jenn, This news is so exciting and thank you for sharing Chapter One! The encouragement of your blog posts, that you write with such courage and character, have literally have saved me from falling to despair. Two very memorable posts that I reread often are (1) Dear Family and Friends, this is Benzodiazepine Withdrawal , (2) 20 Months Out Sucks Ass. If you haven’t already considered adding some of your blog posts to this book … food for thought 🤷♂️ Count me among to fist to order a copy. 🙏🏻❤️
Thank you for your sweet words. I’m glad my posts have helped. Excellent idea about the posts. Maybe I’ll make a book just of some of my posts. Thank you for the idea.
I’ll post a blog asking people for their favorites.
Keep healing. We do recover. ❤️
I’m glad you’ve been able to devote more time to your book. It will be an invaluable resource to the community.
Thank you. I’m working on it. Hope it’s informative. So much ground to cover!
I will buy your book as soon as it is available. It has been 25 months since I took the last dose. The braindamage is so bad I very often want to die. Is it still hope for me?
I am sorry to hear that you are suffering so much. You will heal. In time. Keep going. We do recover.