Results Summary
Age
The most common age group was the 50 -59 age bracket (32%).
The average age over all surveys was 47 years.
There was a small difference in the average age of those who participated in the various surveys. The average age of those choosing to stay on benzodiazepines and those who had withdrawn but were not well for more than 12 months was 50 years. The average age of those withdrawing, or about to withdraw, or who had been withdrawn for less than 12 months and were not well, was 46 years.
See http://www.benzosupport.org/age.htm
Gender
Sixty four percent (64%) of those who participated in the surveys were female and 36% were male.
See http://www.benzosupport.org/gender.htm
Types of Benzodiazepines Taken
Klonopin (36%), Xanax (19%), Ativan (18%) and Valium (12%) were the four most common benzodiazepines taken by respondents in the survey.
Fourteen percent (14%) of respondents took more than one benzodiazepine.
See http://www.benzosupport.org/types_of_benzos_taken.htm
Amounts Taken
The doses of benzodiazepines taken for all those participating in the surveys was converted to Valium equivalencies* for comparison purposes.
The average amount of benzodiazepine taken (Valium equivalent) was 44mg.
Seventy three percent (73%) of respondents had a daily dose of 40mg or less. Seven percent (7%) had a daily dose of over 120mg. The maximum dose encountered was 500mg.
The median daily dose of those taking Xanax and Klonopin was 30mg per day Valium equivalent, compared to Valium with a median dose of 15mg and Ativan with a median dose of 20mg.
http://www.benzosupport.org/daily_dose_taken.htm
Time Taken
More than 50% of respondents had been taking benzodiazepines for less than 5 years.
When these figures were split out by survey type - the group that had decided to stay on benzodiazepines appears to have a different distribution in the number of years that the drugs were taken, compared to the other groups. Thirty four percent (34%) of this group had been taking benzodiazepines for more than 20 years compared with only 9% in the group who was withdrawing, or was about to withdraw.
The average number of years on benzodiazepines, over all survey types, was 8 years. Those currently withdrawing, or about to withdraw, had the lowest average of 6 years; and those who had decided to stay on had the highest average of 14 years.
See http://www.benzosupport.org/time_on_benzos.htm
There was a slight positive relationship between increasing numbers of years on benzodiazepines and the sizes of the dose taken.
See http://www.benzosupport.org/time_by_dose.htm
Reason for Taking Benzodiazepines
By far the most reported reason for taking benzodiazepines was for anxiety relief. More than 50% of people who responded to the survey said that this was the reason that they were prescribed benzos. Twelve percent (12%) were prescribed them for insomnia and 18% were prescribed them for some combination of reasons.
See http://www.benzosupport.org/Reasons%20for%20Taking%20benzos.htm
Symptoms Trends
Prior to taking benzodiazepines respondents indicated that they were experiencing some symptoms but were rating these symptoms on average just below mild.
At the time they decided to withdraw from benzodiazepines, the symptom rating had increased to an average of 11.5, half-way between mild and moderate.
At the worst point in withdrawal the average rating had increased to just over 12, a rating of moderate.
By the end of the taper the average rating had dropped to just over 11.5, half-way between mild and moderate.
Symptoms were on average, worse for respondents at the worse point in their withdrawal.
Looking at the average symptoms for the groups that were not well 12, 24 and 36 months after withdrawal, there was a general trend towards a decrease in the average symptoms rating as time passed.
Those who decided to stay on their benzodiazepine reported that their average symptoms rated 11.2, just over mild, at the time they made there decision to stay on their benzodiazepine.
See http://www.benzosupport.org/symptoms2.htm
Symptom Progression
The symptom groups that bothered people the most were musculoskeletal, neurological, paradoxical and psychiatric.
The most interesting trend was the relationship between the musculoskeletal and neurological symptoms and the paradoxical and psychiatric symptoms.
Before taking benzodiazepines the paradoxical and psychiatric symptoms were rated as being the worst. The musculoskeletal and neurological ones were rated very similar to the other symptom groups.
By the time respondents began their taper, the rating for the musculoskeletal and neurological symptoms was beginning to increase. At the worst point in withdrawal the musculoskeletal and neurological symptoms were rated much the same as the paradoxical and psychiatric symptoms. At the worst point in recovery musculoskeletal and neurological symptoms were rated as more severe than the paradoxical and psychiatric symptoms. As respondents progressed through 12, 24 and 36 months off benzos, but not well, the musculoskeletal and neurological symptoms were becoming a more prominent problem compared to the paradoxical and psychiatric symptoms.
See http://www.benzosupport.org/symptoms_by_stage.htm
Symptoms in Recovery
In the group who had recovered from benzodiazepine use and withdrawal there was a tendency for cardiovascular symptoms (25%) to resolve first and for the psychiatric ones (30%) to resolve last.
See http://www.benzosupport.org/symptoms_in_recovery.htm
Functionality Trends
Before staring benzodiazepines respondents reported that they were able to be involved in about 7 of the listed activities with ease. At the time they decided to withdraw this had fallen to 4 activities and at the worst point in withdrawal this fell again to 2 activities. After that point the number activities that could be completed with ease began to increase. Those who were 36 months off, but still not well, were able to participate in 5 of the activities with ease. Those who had decided to remain on benzodiazepines were able to participate in around six of the activities with ease.
Self care is the activity that was affected the least by withdrawal and recovery, with around 80% of respondents being able to self care with ease no matter what point in the benzo journey they were. Socializing and working were the activities that were affected the most, only around 30% of respondents were able to socialize or work with ease throughout the benzo journey.
See http://www.benzosupport.org/functionality_trends.htm
Functionality by Stage
The ability of respondents to be involved in the various activities with ease, varied depending on the point in the benzo journey they were at. For instance before starting benzodiazepines, socializing was the activity that was causing the most problems but about 70% were able to do this with ease. Self care was the activity that was most easy for respondents and about 93% of respondents were able to do this with ease.
At all the stages, self care was the activity that respondents found they were able to do with the most ease. At all stages, socializing or working were the activities that respondents found most difficult.
There is a noticeable drop off in functionality between the time respondents decided to take benzodiazepines and the time they decided to withdraw. For instance 76% said they were able to work with ease before they started to take benzos. This had dropped to 31% at the time they decided to withdraw and then dropped again to 13% at the worst point in withdrawal.
Before starting to take benzos, the majority of respondents were participating in all activities with ease. All activities had at least 70% of respondents reporting that they could be managed with ease.
At the time respondents had decided to taper, functionality had begun to decrease. All activities were now reporting only 30% or more could be managed with ease. Seventy-five percent (75%) of respondents were able to self care with ease and 30% were able to socialize with ease.
At the worst point in withdrawal percentages of people being able to be involved in these activities was still dropping. Only 58% were self caring with ease, 9% were socializing and 13% were working with ease.
At the end of the taper functionality was improving in all activities.
For those not well at 12, 24 and 36 months off, socializing and working were the activities that were showing the least improvement.
See http://www.benzosupport.org/functionality_by_stage.htm
Functionality in Recovery
Self Care
Seventy-six (76%) of those in the recovered group had been able to self care with ease during all stages of the benzodiazepine journey. For those who were not finding self care easy, the problem had resolved itself, on average, within 5 months. For some the problem had resolved within a month after getting off benzos, for some it took as long as 12 months.
Cooking
Fifty-two percent (52%) of those in the recovered group said that they had no problems with cooking. For those who had found cooking a problem, it resolved, on average within 6 months of ceasing benzos. For some it resolved as quickly as one month off for others it took 24 months.
Housework
Forty-five percent (45%) of those in the recovered group had not had a problem with doing housework with ease. For those that had a problem with this activity, it had resolved, on average, by 7 months off benzos. For some it had resolved by one month off for others it took as long as 24 months. One percent of this group felt that they were not yet able to do housework with ease.
Shopping
Forty-five percent (45%) of those in the recovered group had not had a problem with doing shopping with ease. For those that had a problem with this activity, it had resolved, on average, by 8 months off benzos. For some it had resolved by one month off for others it took as long as 24 months.
Socializing
Only 22% of the recovered group said that socializing was not a problem for them. It took the others, on average, 10 months for this problem to resolve. It resolved for some as quickly as one month off benzo and for some it had taken as much as 36 months to resolve. Three percent (3%) of this group said that they felt this problem had still not fully resolved.
Driving
Forty-two percent (42%) of the recovered group said that they had not had a problem with driving. It took 8 months on average for the problem to resolve for the others. The resolution time varied from 1 - 24 months, with 3% saying that their problems hadn't fully resolved.
Work
Thirty-six percent (36%) of the recovered group said that they had not had a problem with working. It took 13 months on average for the problem to resolve for the others. The resolution time varied from 1 - 60 months, with 15% saying that they were not working for several reasons including retirement or having a baby.
Exercise
Thirty-nine percent (39%) of the recovered group said that they hadn't had a problem with exercising. Of the remainder it took on average, 11 months for the problems they had to resolve. Resolution time ranged from
1 - 36 months off benzos. Three percent said that the problems they were having hadn't fully resolved.
Intellectual Activity
Thirty percent (30%) had no problems with intellectual activities. For those with problems it took on average, 11 months for those problems to resolve. Resolution time ranged from 1 - 36 months with around 5% saying that they did not think things had fully resolved for them.
See http://www.benzosupport.org/functionality_in_recovery.htm
Other Drugs and Benzodiazepine Withdrawal
Sixty percent (60%) of survey respondents reported that they were taking other medication prior to starting benzodiazepines.
A variety of other medications were being taken. Twenty percent said they were taking a combination of medications. The most common single medication being taken was antidepressants. Eighteen percent (18%) reported they were taking this class of medication.
Those who weren’t taking other medication at the time they started benzodiazepines reported that they were slightly more functional at the worst point in withdrawal than those who did: they had an average functionality of 2.2 tasks done with ease compared to 2.
Those who weren’t taking other medication at the time they started benzodiazepines reported that they recovered a little quicker than those who did: 11.7 months was the average recovery time compared to 12.4 months.
Around 40% of respondents said that they added in medication during withdrawal.
The most common action for those who added in drugs during withdrawal was to add a combination of drugs (13%) or add in only antidepressants (9%).
Of those who added in medication during withdrawal, around 50% thought that it helped them, 25% thought that it didn't make any difference and 25% though that it was detrimental to their withdrawal.
Those who did not add medication in rated themselves better on functionality than the other groups who added in medication. They felt at the worse point in withdrawal that they were able to do 2.5 of the 9 activity tasks with ease. The group who added in medication and felt it helped were able to do 1.9 tasks and those who added in medication and felt it hurt them only rated themselves as being able to do .5 (or half) of a task.
Those who did not add medication in said they recovered on average 11.4 months after ceasing benzodiazepines compared with 15.8 months for those who added in medication and felt that it helped them.
See http://www.benzosupport.org/other_drugs_and_benzo_withdrawal.htm
Supplements and Benzodiazepine Withdrawal
Thirty-seven percent (37%) of respondents said that they added supplements during withdrawal.
Thirty-two percent (32%) of those who added in supplements thought it helped them and 23% thought that they were detrimental to their withdrawal.
The group who added in supplements and thought it helped said that they were able to do 2.7 of the nine functionality activities with ease compared to 2.3 activities of the group who didn't add in supplements. Those who added in supplements and though it was detrimental, were only able to do 1.1 of the functionality activities with ease.
The group who added in supplements and thought it helped, said that they recovered from the withdrawal experience in 11.9 months compared with 11.8 months for those who didn’t add in supplements. Those who added in supplements and though it was detrimental, said they recovered on average in 16 months.
See http://www.benzosupport.org/supplements_and_benzo_withdrawal.htm
Withdrawal Methods
Seven different withdrawal methods were investigated. These were cold turkey, inpatient detox, outpatient detox, rapid direct taper using the dry cutting of pills, slow (cuts of 10% or less) direct taper using the dry cutting of pills, valium crossover and Ashton style taper and water titration.
Respondents tried a variety of different methods to get off their benzo. Fifty-eight percent (58%) tried just one method and some tried as many as five methods.
Respondents were asked to rate how difficult they found each of the methods they used to withdraw from their benzodiazepine. The scores used were 1 = Impossible, 2 = Difficult, 3 = Bearable, 4 = Easy. The average score for each method was calculated - the results are below.
The table below summarizes the degree of difficulty that each method received.
|
Method |
Rating |
|
Cold Turkey |
1.5 |
|
Inpatient detox |
1.8 |
|
Rapid direct taper using dry cutting of pills |
1.9 |
|
Outpatient detox |
1.9 |
|
Slow (cuts of 10% or less) direct taper using dry cutting of pills |
2.3 |
|
Valium crossover and Ashton style taper |
2.5 |
|
Water Titration |
2.8 |
The cold turkey method was rated most difficult and got an average score of 1.5 - half way between impossible and difficult. Water titration was rated most easy and got a score of 2.8 - just below bearable.
See http://www.benzosupport.org/withdrawal_methods.htm
Cold Turkey
Seventy percent (70%) of respondents tried to get off their benzodiazepine using the cold turkey method. Sixty percent (60%) of those who tired this method - found this it impossible. Ninety-three percent (93%) said it was impossible or difficult.
N.B. Cold Turkey withdrawal of benzodiazepines is not even recommended by benzodiazepine manufacturers.
See http://www.benzosupport.org/cold_turkey.htm
Inpatient Detox
Forty-seven percent (47%) of respondents tried the inpatient detox method. Eighty-six (86%) said they found it impossible or difficult.
See http://www.benzosupport.org/inpatient_detox.htm
Outpatient Detox
Fifteen percent (15%) of respondents had tried the outpatient detox method. Eighty-two percent (82%) rated it as being impossible or difficult.
See http://www.benzosupport.org/outpatient_detox.htm
Rapid Dry Cutting
Fifty-three percent (53%) of respondents had tried the rapid dry cutting method (cuts larger than 10%). Eighty-seven percent (87%) rated this method as difficult or impossible.
See http://www.benzosupport.org/rapid_dry_cutiing.htm
Slow Dry Cutting of the Initial Benzodiazepine
Forty-five percent (45%) of respondents tried the slow dry cutting method (cuts of 10% or less). Sixty-eight percent (68%) said that they found this method difficult or impossible.
See http://www.benzosupport.org/slow_dry_cutting.htm
The Valium Crossover and Ashton Style Taper
Thirty-four percent (34%) of respondents had tried the Valium cross and taper. Fifty-one percent (51%) rated it as impossible or difficult.
See http://www.benzosupport.org/valium_cross_and_taper.htm
Water Titration
Nineteen percent (19%) of respondents had tried the water titration method of withdrawing from benzos. Thirty Seven percent (37%) said it was impossible or difficult.
See http://www.benzosupport.org/water_titration1.htm
Recovery Times
Sixty-seven percent (67%) felt that they were recovered or almost recovered by 12 months off, 91% indicted that they felt recovered by 2 years off and 98% by three years off.
See http://www.benzosupport.org/recovery_times.htm
Factors Effecting Withdrawal and Recovery
4.17.1 Age
Age seemed to play a role in withdrawal and recovery. The younger age groups rated withdrawal more difficult and themselves less functional than the older age groups but they recovered quicker.
See http://www.benzosupport.org/withdrawal_and_recovery.htm
Withdrawal Method
The withdrawal method chosen by the respondents appeared to effect withdrawal and recovery. Those who chose cold turkey rated their withdrawal as more difficult (12.6), themselves less functional (.9 out of 9 activities) and they took on average longer to recover (16.9 months). Those who choose to use water titration rated their withdrawal the easiest (11.8); they were most functional (4.6 out of 9 activities) and they recovered quicker (5.1 months).
See http://www.benzosupport.org/withdrawal_and_recovery.htm
There was a tendency for those who rated their withdrawal more difficult and themselves less functional at the worst point in their taper to take longer to recover. It is evident that those who were not well at 12, 24 and 36 months after the completion of their withdrawal rated their withdrawal as more difficult and themselves as less functional at the worst point in withdrawal. Those who were not well 36 months after completing their taper rated the difficulty of their withdrawal as 13 compared with 12.3 for the group that had recovered. They rated their functionality as .8 out of 9 activities compared with 3 out of 9 for the recovered group.
See http://www.benzosupport.org/withdrawal_and_recovery.htm
Time Taken
There is a slight upward trend in recovery time by the number of years taken. Those who had taken benzodiazepines for a year or less took 13.3 months to recover, those who took them for one to four years took 9.9 months to recover, those who took them for 20 years or more took 15 months on average to recover.
See http://www.benzosupport.org/withdrawal_and_recovery.htm
4.17.5 Amount Taken
There was no clear trend as to the effect that amount taken had on withdrawal and recovery when the amount taken was broken down into 10 and 20mg Valium equivalent groups. Looking at the pattern for those who took 40mg and under, and those who took over 40mg Valium equivalent seems to suggest that those who were taking more than 40mg were worse off on the measures of withdrawal difficulty, functionality and recovery time.
See http://www.benzosupport.org/withdrawal_and_recovery.htm
4.17.6 Support
Those who said that they felt that they had adequate support from their doctor, their family and their friends rated their withdrawal a little less difficult. They were a little more functional and they recovered a little quicker.
See http://www.benzosupport.org/support.htm
4.17.7 Knowledge
Knowledge about how to withdraw seemed to be a factor in withdrawal and recovery. Those who indicated that they thought they had enough knowledge about how to withdraw from benzodiazepines rated their withdrawal less difficult, their functionality greater and they recovered quicker.
See http://www.benzosupport.org/knowledge.htm
Work and Caring
Those who said they had to work for a living rated the difficulty of their withdrawal the same as those who didn't but they rated themselves more functional and they recovered a little sooner. The same situation occurred with those who needed to care for a family.
See http://www.benzosupport.org/work_and_caring.htm
Smoking or Living Alone
Those who smoked or lived alone rated themselves on average as having more difficult withdrawal, as being less functional and they took a little longer to recover.
See http://www.benzosupport.org/smoking_and_living_alone.htm
Anxiety and Other Health Problems
Contrary to expectation, those who said that they had previous problems with anxiety or were dealing with heath issues other than those for which benzodiazepines were taken, seemed to fare, a little better than those who didn't have these additional problems to cope with. They rated themselves a little more functional and they recovered a little sooner.
See http://www.benzosupport.org/anxiety_and_health_problems.htm
Reinstatement
Eighteen percent (18%) of those who had withdrawn from their benzodiazepine had attempted a reinstatement at some time during their withdrawal.
Forty-five percent (45%) of respondents rated their experience with reinstatement as successful and 29% rated it as unsuccessful.
See http://www.benzosupport.org/reinstatement.htm
Up Dosing
Of those who had withdrawn from benzodiazepines, 26% said that they had tried to up dose at some stage during their taper as a way to stabilize before continuing their taper more slowly. Forty-four percent (44%) said they thought this was a successful thing to do. Twenty-four percent (24%) thought it unsuccessful.
See http://www.benzosupport.org/up_dosing.htm
The Recovered and the Unwell
Those in the group who were unwell at 12, 24 and 36 months off were slightly older than those in the recovered group. The unwell group has an average age of 45.1 years compared with 43.3 years in the recovered group.
The unwell group had a higher percentage of respondents who got off the majority of their benzo using the cold turkey and the rapid direct cutting method. The recovered group had a higher proportion who used the slow direct cutting method and water titration.
Those in the recovered group had a tendency to have been taking benzos for a shorter period of time. Seventy-four percent (74%) of the recovered group had been taking benzos for 5 years or less compared with 45% in the unwell group.
There was a tendency for those in the unwell group to rate the most difficult point in their withdrawal as more difficult than the recovered group. Ninety-four percent (94%) of the unwell group rated their withdrawal as extremely difficult compared with 60% of the recovered group.
The unwell group rated themselves as less functional than the recovered group at the worst point in their withdrawal. Forty-five percent (45%) of the unwell group said that they could not do any of the nine functionality activities with ease compared with 27% from the recovered group.
The unwell group was more likely to report that their symptoms, at the worse point in withdrawal, were moderate to severe (70%) compared to the recovered group (48%).
See http://www.benzosupport.org/the_recovered_and_the_unwell.htm
Staying on Benzodiazepines
Thirteen percent (13%) of the survey respondents said that they had decided not to withdraw from their benzodiazepines.
Forty-three percent (43%) of these said they were staying on because benzodiazepines were effectively managing their medical condition. Forty-eight percent (48%) were staying on because it was too difficult to withdraw.
There was a tendency for those who had decided to stay on their benzos to be in the older age groups compared with those who had decided to taper. Sixty-four percent (64%) of those who decided to taper were under the age of 50 compared with 41% in the group who had decided to not to taper their benzos.
There was a tendency for those who had decided to stay on, to have been on benzodiazepines for longer than those who had decided to taper. Thirty-four percent (34%) of those staying on had been taking benzos for more than 20 years compared with 9% for those who had decided to taper.
Those staying on their drugs had a tendency to have less severe symptoms than those who had decided to taper. This was taken at the point respondents made the decision to either taper or to stay on.
There was a tendency for those deciding to stay on to be able to do more of the functionality tasks with ease than those who had decided to taper. This was taken at the point respondents decided to either taper or to stay on their drug. Twenty-seven percent (27%) of those staying on said that they could do all 9 of the functionality activities with ease compared to 16% from the group who decided to taper.