Seven surveys were developed. These were:
Benzodiazepine Survey One - Getting Ready to Withdraw. The purpose of this survey was to collect statistical information from people who were intending to or had started to withdraw from benzodiazepines.
Benzodiazepine Survey Two - Withdrawal Completed. The purpose of this survey was to collect statistical information from people who had completed their withdrawal from benzodiazepines.
Benzodiazepine Survey Three - Recovered. The purpose of this survey was to collect statistical information from people who had completed their withdrawal from benzodiazepines and consider themselves to be recovered or just about recovered.
Benzodiazepine Survey Four - Still in Withdrawal 12 Months after Stopping Benzodiazepines. The purpose of this survey was to collect statistical information from people who had completed their withdrawal from benzodiazepines but at 12 months off did not consider themselves healed.
Benzodiazepine Survey Five - Still in Withdrawal 24 Months after Stopping Benzodiazepines. The purpose of this survey was to collect statistical information from people who had been completely withdrawn from benzodiazepines for 24 months but did not consider themselves healed.
Benzodiazepine Survey Six - Still in Withdrawal 36 Months after Stopping Benzodiazepines. The purpose of this survey was to collect statistical information from people who had been completely withdrawn from benzodiazepines for 36 months but did not consider themselves healed.
Benzodiazepine Survey Seven - Decided not to Withdraw. The purpose of this survey was to collect statistical information from people who had decided not to withdraw from benzodiazepines in the immediate future.
Each member of the Yahoo Benzo Group was contacted individually by Email and asked to participate in the survey. Three weeks later they were contacted again with a reminder Email.
Three weeks after the last reminder a copy of the data was taken for initial analysis purposes.
At the time the survey was conducted the membership of the Yahoo benzo Group stood at 3020 people. The Email address for 361 of those members bounced.
There were 346 responses to the surveys.
Thirty-seven percent (37%) of these answered ‘Survey One’ for those who were withdrawing or were about to withdraw.
Seventeen percent (17%) answered ‘Survey Two’ for those who had completed their taper in the last 12 months but were not yet recovered.
Nineteen percent (19%) completed ‘Survey Three’ saying they were recovered or almost recovered.
Six percent (6%) were in the 12 months off group but still not well – ‘Survey Four’.
Three percent (3%) were in the 24 months off group but still not well - ‘Survey Five.
Four percent (4%) were in the 36 months off group but still not well - ‘Survey Six’.
Thirteen percent (13%) answered ‘Survey Seven’ for those who had decided not to withdrawal from benzodiazepines in the immediate future.
It is intended to keep the survey up and running for a further 18 – 24 months to build up the database of information on benzodiazepine withdrawal and recovery, and then to do a final analysis at that point in time. These are the results of the initial analysis.
Symptoms Comparisons
In order to investigate the symptoms that occur during withdrawal and recovery, the symptoms were divided into nine groups. These were:
CARDIOVASCULAR: Fluctuations in blood pressure, Mild hypertension, Shivering, feelings of extreme cold or heat and Heart palpitations.
DERMATOLOGICAL: Allergic reactions, Chemical sensitivities, Dry, itchy skin, Dry throat, sore tongue, and thrush, Formications (sensation of crawling on skin), Glassy eyes, Hair loss, Leukonychea (whitening of nails), Nosebleeds, Oedema, Paraesthesiae (numbness, tingling), Perspiring, night sweats, Rashes and blotches.
GASTROINTESTINAL: Bladder incontinence, Constipation (sometimes alternating with diarrhoea), Diarrhoea, Dyspepsia (indigestion), Gastritis, Heartburn, Nausea, Oesophagitis and Stomach cramps.
MUSCULOSKELETAL: Aching joints, Blepharospasm (eye twitches) Formication (sensations of bugs crawling on skin, Gait disturbance, Jaw, tooth, neck and shoulder pain, Muscle wasting, Muscle spasms, Rapid weight loss, Severe headaches, Severe muscle rigidity and Tremor or feeling of inner vibration
NEUROLOGICAL: Blurred vision, seeing spots, flashes, vivid vision, Bruxism (teeth grinding), Dysphagia (difficulty eating or swallowing), Dizziness, Electric shock feelings, Fatigue, leaden heaviness, Hypersensitivity to light, sound, and other stimuli, Neurological problems (e.g. topical anesthesia), Severe muscle rigidity, Speech difficulties, Thirst, Tinnitus (ear buzzing, popping, ringing, hissing), Tiny pupils, Tremor and Vertigo
GENITOURINARY: Impotence, Libido disturbances, Menstrual irregularities, urinary problems (continence or incontinence) and Encopresia (faecal incontinence)
PARADOXICAL: Agitation, Aggressive behaviour, Anxiety, Breathlessness, Excitability, Fear, Hostility, Hyperactivity, Irrational rage, Insomnia, Nervousness, Nightmares, vivid dreams, Phobias and Restlessness
PSYCHIATRIC: Apathy, Anxiety, Delirium, Depersonalization, Depression, Derealization, Distortions or hallucinations, Dysphoria (inability to feel pleasure or happiness), Fear, Hyperventilation, Hyperreflexia (‘jumpiness’), Hypnologic hallucinations (sleepwalking), Lack of concentration, Nightmares, Obsessions, Paranoia, Phobias (hydrophobia, agoraphobia, monophobia, acrophobia, anthropophobia and others), Rapid mood changes, Suicidal thoughts and Short-term memory impairment
RESPIRATORY: Breathlessness, Choking, Dry, tickly cough, Dyspnea (breathing difficulty), Hyperventilation (over breathing), Inability to draw satisfying breath, Night apnea and Sinusitis
Survey respondents were asked to rate symptoms as not existing, mild, moderate or severe at nine different points during the benzo journey. The evaluation points were
- Before starting benzos
- At the time of deciding to withdraw
- The worst point in withdrawal
- The end of taper
- The worst point in recovery
- 12 months off and not well
- 24 months off and not well
- 36 months off and not well
- At the time of deciding to stay on benzos
In order to make a comparison of symptoms at various stages, averages were calculated from the responses. An average of 10 indicates that no symptoms were being experienced. An average of 11 indicates that mild symptoms were being experienced, 12 the symptoms were moderate and 13 the symptoms were severe.
Functionality Comparisons
To assess how benzodiazepine withdrawal and recovery affected day to day life, respondents were asked to rate which of the following activities they were able to do with ease.
Self care - showering, dressing
Cooking
Housework and home care
Shopping
Socializing
Driving
Working
Exercise
Intellectual Activities
Respondents were asked to rate their abilities with these activities at the following points in their benzodiazepine journey
- Before starting benzos
- At the time of deciding to withdraw
- The worst point in withdrawal
- The end of taper
- 12 months off and not well
- 24 months off and not well
- 36 months off and not well
- At the time of deciding to stay on benzos
In order that comparisons could be made, a respondent was allocated one point for every activity they were able to participate in with ease. It is assumed that a completely healthy