Author Topic: Posts to this research study thread would be much appreciated - please share!  (Read 10411 times)

[Buddie]

1.   Background
Briefly describe your history of benzodiazepine or Z-drug use.
What benzodiazepine/Z-drug(s) were you taking?
What was it prescribed for?
How long you were taking it for?

A: Used both Xanax and Ambien for 25 years. They were prescribed for insomnia and anxiety. 3mg of Xanax per day and 10mg of ambien per day for 25 years.

2.   Decision to stop
What made you decide to reduce/stop your long-term use of the benzodiazepine or Z-drug medication? (What was the turning point?)

A: my doctor, who prescribed them for 25 years said “they aren’t good for you, do you want to try to get off of them?”

3.   Discontinuation process
How did you go about reducing and stopping your long-term use of the benzodiazepine or Z-drug medication?
Did you have a particular process? What did that involve?
Did you have help from anyone?

A: Xanax: I tapered from 3mg to 1mg very easily in about 3 weeks and had no problems. When I got to 1mg and below I mirco-tapered at .003g per day using a digital scale. The taper from 1mg to 0mg took about 6 months. My terrible withdrawal symptoms appeared when I got below 1mg.

No one helped me except online site called benzobuddies. My family doctor continued to prescribe the Xanax and ambien until I got off of them.

4.   Challenges
What were the biggest challenges to you successfully stopping your long-term use of the benzodiazepine or Z-drug medication?
How did you overcome those challenges?

A: the biggest challenge was the intensity of withdrawal symptoms. The symptoms are epic in their power and longevity. Each day death felt very close because of the symptoms.

I overcame the challenges with hope, science, and determination. Hope,  because I had heard other success stories. Science, because I understood what was happening after I started talking to others online. Determination, meaning I was absolutely sure I was coming off of this drug.



5.   Help/Assistance
What helped or assisted you the most in successfully stopping your long-term use of the benzodiazepine or Z-drug medication?


A: My wife’s support and the micro-tapering scale which weighed my titration accurately.

Truthfully, ambien helped me get off Xanax. I was on both Xanax and ambien for 25 years. I quit the Xanax first (took 6 months) while continuing to take the ambien. After I was off Xanax, I waited one month and I tapered off the ambien in only 10 days.

Ambien allowed me to get relief at night time by minimizing the Xanax withdrawal symptoms
and assisting me in sleeping. Ambien was my key to success because it allowed me to go from 7pm to about 1pm without unbearable symptoms.

Ambien was VERY easy to discontinue and only took 10 days to titrate.

Ambien was my key to success, oddly enough.




6.   Advice for others
If you were to offer one piece of advice to someone who was currently taking a benzodiazepine or Z-drug medication on a long-term basis, what would it be?

A: Two pieces of advice would be: use a micro taper and use ambien. I know ambien is a Z drug, but it made getting off Xanax possible. I suffered less because of ambien. I know medical advice says the opposite, but ambien absolutely helped me get off Xanax.


Hi [...],

Thanks for your valuable contribution to our study!

It's great to see more success stories being added.

Thanks again
Cathal
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Request for help with research study on success stories!
« Reply #21 on: January 29, 2021, 02:35:19 pm »
Dear BB members,

Thanks for all the contributions that we have received so far.

For anyone who is only seeing this post now, we would be delighted to hear from you!

Many thanks
Cathal
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Request for help with research study on success stories!
« Reply #22 on: January 29, 2021, 05:15:57 pm »
I hereby grant Dr. Cathal Cadogan, Lecturer and Research Supervisor, Royal College of Surgeons in Ireland (BenzoBuddies username: [...]) to use my withdrawal- and recovery-related data contained within my Success Story for the study - [ study, as detailed here: http://www.benzobuddies.org/forum/index.php?topic=250579.msg3187012#msg3187012 ]

I hope this helps in some small way Catha. Appreciate you working to help others.


I left Japan with two preschool boys and one suitcase. “He” thought we were going to visit family stateside for a couple of weeks, but I was running - running because he had repeatedly raped me for six years. I held out hope that he would stop being abusive until he admitted that he had molested his two younger sisters and that he was glad we’d not had a daughter. I still feel like vomiting when I think about this.

Within three months I’d found a job, bought a secondhand car, and rented an apartment. Outwardly things looked good, but I was constantly anxious, and sleep was a challenge. I was in a new city with a new job and had no family or friends in the area.

My general practitioner suggested that I take Xanax. He said that it was not habit forming and that I could just take it as needed. After a couple of months he said that I should consider taking it daily and that it would work like diabetes medications by keeping levels steady in my body. Then, I would be calm all the time. Okay. That sounded good. Calm would be a blessing.

I was taking three mg per day when my doctor got arrested for overprescribing opiates. Actually, a guy died after getting 1000 pain pills in one month from my doctor. He did the same with benzodiazepines, but no one was really talking about benzos. So, his benzo victims were just collateral damage.

On some level I realized that I could not stop taking Xanax at this point, but I tried not to think about it. I also tried not to think about the falls. I tumbled down my basement stairs and literally rolled the skin on my shin down like a sock. I needed a skin graft. I slipped on ice and fell backwards down the porch steps. That knocked me out, and the cold eventually woke me up. I had a concussion which was never treated but has caused lasting issues. Then I visited my son in the rain forest where I slipped and cut my knee on a rock. Cellulitis set in, and I was not able to fly back home as planned. I was in a hospital and could not even speak the language. I had a couple of surgeries and did not lose my leg. 

A new GP suggested that I get off Xanax. She said that I’d need to do that slowly. I began tapering on my own, since she really didn’t have any guidelines. After waking up on the floor twice, I was getting scared and began doing online research including signing up for Benzo Buddies. I discovered that benzodiazepines are very dangerous and the quitting could be a challenge. Actually, I had figured that out.

By this point, I was in full blown withdrawal. This included a host of physical and mental issues. I heard music playing when around fans, and my 3D vision was off so that when I’d talk to someone it would appear that their head was a few inches in front of their neck and body. Time was messed up, and I did not remember a couple of decades of my life. My face in the mirror did not look familiar. I was in so much pain especially with my back and my eyes. I was not taking medicine for diabetes, because I had no recall that I had diabetes.

Somehow I managed to get to another general practitioner. He said that I’d need to be on Xanax for life. Oh no. That could not be good. I liked the GP though, so I just got the pills each month while continuing to taper. I ended up with a stash of seven bottles of Xanax.

At this point I was at .5 mg per day, and I really could not tolerate reductions in the dry pills. I’d read about liquid titration on Benzo Buddies. It seemed like the members who were successfully getting off benzos were the ones who were dissolving the pills and taking very small reductions. I felt that was my only chance of getting off Xanax, so I began dissolving pills in vodka and adding water. Then, I’d reduce maybe 1/100 ml at a time.

I won’t pretend like it was easy stopping Xanax even when I cut down very tiny amounts. The physical and mental side effects were horrific. There were a few times when I felt like I left my body and was looking down and hearing myself howl like an animal with a leg caught in a trap. The pain was excruciating and terrifying. But, I kept plowing along.

My main support during this time was my cat. My family is quite dysfunctional, and my social skills suffered terribly during this time.

All told, it took ten months from the time the female GP suggested I get off Xanax and when I took my last syringe of the poison. I didn’t really know that the last day was my last day. I had started to feel a little better as the doses went down. I was taking very little when I woke up and decided that I could finally do without the benzo. Actually I wasn’t sure, but I figured I could keep tapering if necessary. I didn’t have to. Although I did not feel good to start with, I did not feel any worse than while tapering small amounts.

This was a year and a half back. I feel much better now but do have some residual traces of the benzo and benzo withdrawals days. Since I was early on in the process of being off Xanax when the global pandemic hit, it’s a little hard to judge. By necessity I mostly stay at home to be safe from Covid19, but I do not feel terrified when I pick up groceries or go to the post office now. The fan does not play gospel bluegrass anymore, and people no longer look like bobbleheads. I know who I am in the mirror.

It was a long, hard haul, but I made it back to the human side.


*I put this in Success Stories as well.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Request for help with research study on success stories!
« Reply #23 on: January 31, 2021, 12:56:34 am »
I hereby grant Dr. Cathal Cadogan, Lecturer and Research Supervisor, Royal College of Surgeons in Ireland (BenzoBuddies username: [...]) to use my withdrawal- and recovery-related data contained within my Success Story* for the study detailed above.

*There is a link to my original Success Story in my signature that is more descriptive, but contains more personal information as well (such as my dog's name, which is also my username). Please use the Success Story below (with your format) for your study, and contact me for additional permission if you want to use excerpted content from my original Success Story.

1.   Background
I took 15mg Valium daily for about a decade. I also took .5mg Xanax “as needed” for panic attacks. I have PTSD and was originally prescribed benzodiazepines by a psychiatrist in conjunction with cognitive behavioral therapy, then continued benzodiazepines with my primary care physician after discontinuing CBT.

2.   Decision to stop
Cognitive and physiological decline came on so gradually that I didn’t notice anything was wrong until I crashed my car while awake, “alert,” and undistracted - and then had a totally blasé reaction. It didn’t click that the pills were the problem until I found Benzo Buddies. By then I couldn’t read a map or go to the grocery store or even walk around my hometown without getting disoriented. I basically lived at work and on my couch.

3.   Discontinuation process
I did a cut and hold dry taper over a five month period with help from a Nurse Practitioner. In retrospect I probably should have reduced more slowly and gradually, but I was just so desperate to get off them. It took two years after my last dose before I considered myself recovered.

4.   Challenges
Physical withdrawal symptoms were overwhelming and included nausea, pain, numbness, hypersensitivity to sensory input (light, sound, smell), dizziness, slurred and stuttered speech, total loss of speech and mixing up words, and muscle spasms. Mental withdrawal symptoms included perpetual fight-or-flight response, looping intrusive thoughts, and exacerbated anxiety and depression. The hardest part was how long it all took, not knowing if or when it would ever get better. I overcame these challenges through mindfulness, gratitude, positive thinking, exercise, yoga, meditation, fresh air and nature, community support, hot bubble baths, cannabis, and time. It was absolutely the hardest thing I have ever done.   

5.   Help/Assistance
Aside from the self-care described above (see #4), the most important assistance I received was from my Nurse Practitioner. She had experience with benzodiazepine withdrawal, so she believed me and was able to provide slow tapering advice as well as documentation for “light duty” at work. I also had crucial support from family and friends who knew what I was going through.


6.   Advice for others
Benzodiazepines are not safe for long-term use. It is downright dangerous how they make you feel “normal” at first, but the negative effects are insidious and gradual…and can be devastating.
« Last Edit: January 31, 2021, 01:02:44 am by [Buddie] »
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Request for help with research study on success stories!
« Reply #24 on: February 01, 2021, 11:39:03 am »
I hereby grant Dr. Cathal Cadogan, Lecturer and Research Supervisor, Royal College of Surgeons in Ireland (BenzoBuddies username: [...]) to use my withdrawal- and recovery-related data contained within my Success Story for the study - [ study, as detailed here: http://www.benzobuddies.org/forum/index.php?topic=250579.msg3187012#msg3187012 ]

I hope this helps in some small way Catha. Appreciate you working to help others.


I left Japan with two preschool boys and one suitcase. “He” thought we were going to visit family stateside for a couple of weeks, but I was running - running because he had repeatedly raped me for six years. I held out hope that he would stop being abusive until he admitted that he had molested his two younger sisters and that he was glad we’d not had a daughter. I still feel like vomiting when I think about this.

Within three months I’d found a job, bought a secondhand car, and rented an apartment. Outwardly things looked good, but I was constantly anxious, and sleep was a challenge. I was in a new city with a new job and had no family or friends in the area.

My general practitioner suggested that I take Xanax. He said that it was not habit forming and that I could just take it as needed. After a couple of months he said that I should consider taking it daily and that it would work like diabetes medications by keeping levels steady in my body. Then, I would be calm all the time. Okay. That sounded good. Calm would be a blessing.

I was taking three mg per day when my doctor got arrested for overprescribing opiates. Actually, a guy died after getting 1000 pain pills in one month from my doctor. He did the same with benzodiazepines, but no one was really talking about benzos. So, his benzo victims were just collateral damage.

On some level I realized that I could not stop taking Xanax at this point, but I tried not to think about it. I also tried not to think about the falls. I tumbled down my basement stairs and literally rolled the skin on my shin down like a sock. I needed a skin graft. I slipped on ice and fell backwards down the porch steps. That knocked me out, and the cold eventually woke me up. I had a concussion which was never treated but has caused lasting issues. Then I visited my son in the rain forest where I slipped and cut my knee on a rock. Cellulitis set in, and I was not able to fly back home as planned. I was in a hospital and could not even speak the language. I had a couple of surgeries and did not lose my leg. 

A new GP suggested that I get off Xanax. She said that I’d need to do that slowly. I began tapering on my own, since she really didn’t have any guidelines. After waking up on the floor twice, I was getting scared and began doing online research including signing up for Benzo Buddies. I discovered that benzodiazepines are very dangerous and the quitting could be a challenge. Actually, I had figured that out.

By this point, I was in full blown withdrawal. This included a host of physical and mental issues. I heard music playing when around fans, and my 3D vision was off so that when I’d talk to someone it would appear that their head was a few inches in front of their neck and body. Time was messed up, and I did not remember a couple of decades of my life. My face in the mirror did not look familiar. I was in so much pain especially with my back and my eyes. I was not taking medicine for diabetes, because I had no recall that I had diabetes.

Somehow I managed to get to another general practitioner. He said that I’d need to be on Xanax for life. Oh no. That could not be good. I liked the GP though, so I just got the pills each month while continuing to taper. I ended up with a stash of seven bottles of Xanax.

At this point I was at .5 mg per day, and I really could not tolerate reductions in the dry pills. I’d read about liquid titration on Benzo Buddies. It seemed like the members who were successfully getting off benzos were the ones who were dissolving the pills and taking very small reductions. I felt that was my only chance of getting off Xanax, so I began dissolving pills in vodka and adding water. Then, I’d reduce maybe 1/100 ml at a time.

I won’t pretend like it was easy stopping Xanax even when I cut down very tiny amounts. The physical and mental side effects were horrific. There were a few times when I felt like I left my body and was looking down and hearing myself howl like an animal with a leg caught in a trap. The pain was excruciating and terrifying. But, I kept plowing along.

My main support during this time was my cat. My family is quite dysfunctional, and my social skills suffered terribly during this time.

All told, it took ten months from the time the female GP suggested I get off Xanax and when I took my last syringe of the poison. I didn’t really know that the last day was my last day. I had started to feel a little better as the doses went down. I was taking very little when I woke up and decided that I could finally do without the benzo. Actually I wasn’t sure, but I figured I could keep tapering if necessary. I didn’t have to. Although I did not feel good to start with, I did not feel any worse than while tapering small amounts.

This was a year and a half back. I feel much better now but do have some residual traces of the benzo and benzo withdrawals days. Since I was early on in the process of being off Xanax when the global pandemic hit, it’s a little hard to judge. By necessity I mostly stay at home to be safe from Covid19, but I do not feel terrified when I pick up groceries or go to the post office now. The fan does not play gospel bluegrass anymore, and people no longer look like bobbleheads. I know who I am in the mirror.

It was a long, hard haul, but I made it back to the human side.


*I put this in Success Stories as well.

Dear [...],

Thank you for adding your story to this thread and helping the study to continue to grow.

I really appreciate your input.
Cathal
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: Request for help with research study on success stories!
« Reply #25 on: February 01, 2021, 11:41:10 am »
I hereby grant Dr. Cathal Cadogan, Lecturer and Research Supervisor, Royal College of Surgeons in Ireland (BenzoBuddies username: [...]) to use my withdrawal- and recovery-related data contained within my Success Story* for the study detailed above.

*There is a link to my original Success Story in my signature that is more descriptive, but contains more personal information as well (such as my dog's name, which is also my username). Please use the Success Story below (with your format) for your study, and contact me for additional permission if you want to use excerpted content from my original Success Story.

1.   Background
I took 15mg Valium daily for about a decade. I also took .5mg Xanax “as needed” for panic attacks. I have PTSD and was originally prescribed benzodiazepines by a psychiatrist in conjunction with cognitive behavioral therapy, then continued benzodiazepines with my primary care physician after discontinuing CBT.

2.   Decision to stop
Cognitive and physiological decline came on so gradually that I didn’t notice anything was wrong until I crashed my car while awake, “alert,” and undistracted - and then had a totally blasé reaction. It didn’t click that the pills were the problem until I found Benzo Buddies. By then I couldn’t read a map or go to the grocery store or even walk around my hometown without getting disoriented. I basically lived at work and on my couch.

3.   Discontinuation process
I did a cut and hold dry taper over a five month period with help from a Nurse Practitioner. In retrospect I probably should have reduced more slowly and gradually, but I was just so desperate to get off them. It took two years after my last dose before I considered myself recovered.

4.   Challenges
Physical withdrawal symptoms were overwhelming and included nausea, pain, numbness, hypersensitivity to sensory input (light, sound, smell), dizziness, slurred and stuttered speech, total loss of speech and mixing up words, and muscle spasms. Mental withdrawal symptoms included perpetual fight-or-flight response, looping intrusive thoughts, and exacerbated anxiety and depression. The hardest part was how long it all took, not knowing if or when it would ever get better. I overcame these challenges through mindfulness, gratitude, positive thinking, exercise, yoga, meditation, fresh air and nature, community support, hot bubble baths, cannabis, and time. It was absolutely the hardest thing I have ever done.   

5.   Help/Assistance
Aside from the self-care described above (see #4), the most important assistance I received was from my Nurse Practitioner. She had experience with benzodiazepine withdrawal, so she believed me and was able to provide slow tapering advice as well as documentation for “light duty” at work. I also had crucial support from family and friends who knew what I was going through.


6.   Advice for others
Benzodiazepines are not safe for long-term use. It is downright dangerous how they make you feel “normal” at first, but the negative effects are insidious and gradual…and can be devastating.

Hi [...],

Thanks for your valuable contribution to the study thread.

It's great to see more success stories being added!

Thanks again
Cathal
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Dear BB members,

If you know any BB members who aren't as active on the forum these days but who might have a story to share, please let them know about this study. The more posts that we collect, the greater the value of the findings that we will be able to generate and share with the community.

Thanks for all the interest and support so far!

Cathal
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

I hereby grant Dr. Cathal Cadogan, Lecturer and Research Supervisor, Royal College of Surgeons in Ireland (BenzoBuddies username: [...]) to use my withdrawal- and recovery-related data contained within my Success Story for the study - [ study, as detailed here: http://www.benzobuddies.org/forum/index.php?topic=250579.msg3187012#msg3187012 ]

1.   Background
I was prescribed Diazepam (Valium) 6-12mg per day for 22 months, between March 2018 to January 2020.

I self-tapered over approximately 7 of those months from July 2019 to January 2020. I completed my taper on January 14th 2020.  I have been medication free since that time (currently 13 months).

Why were they prescribed?

Sept 2017: I was the victim of a violent crime (a random home invasion by a stranger who was suffering from psychosis), from which I sustained severe physical injuries and an understandable physiological trauma response. 

I suffered a Traumatic Brain Injury from the attack and was unable to manage normal activities of daily living.  I was unable to cook, shop, schedule, organise, manage my finances.  Having been an independent human who lived alone, this was untenable.  I needed practical support.  I became more distressed over time as I failed to impart my need or secure the requisite practical assistance while I watched my life unravel.  (nb I have since secured that support and I now board with a full time attendant carer).

I had been seeing a psychologist since the attack and eventually, 5 months after the attack, I relented to her persistent urging that I 'trial' Sertraline, supposedly to 'calm neural excitability'.  She told me that my brain could suffer permanent damage if my distress levels didn't change.  In reality, the drugs were intended to subdue me in lieu of any provision of the practical support I needed and was due.

In January 2018, at my Psychologist's initiation, Sertraline and Quetiapine were prescribed to me 'off label' by my GP.  For conditions I didn't have and for symptoms I wasn't troubled by.  What ensued was the worst torment of my life.  Worse than the recent assault that caused my injuries.

Sertraline and Quetiapine caused an extremely adverse reaction over the course of 6 weeks, resulting in a medical emergency in March 2018.  I had to stop taking them both, on instruction of a Psychiatrist.  I was diagnosed with Serotonin Syndrome, Akathisia and a visible movement disorder and verbal tourettes.

Valium was then prescribed to me at that time, to mitigate the effects of the medication toxicity.  In fact Valium was only ever prescribed to me to mitigate the effects of other psychotropic medication, (iatrogenesis) and never for any underlying condition.

Originally it was prescribed 2mgs, 3 times per day (6mg daily total). 

The label always said 'prn/as required' but in reality I was told by the prescriber to take the full and complete dose every day. 


2.   Decision to stop
I had never wanted to start taking the Valium, so I always wanted to stop. 

But I was trying to be responsible and follow instructions that said I should not stop abruptly, and I should do so only under medical supervision.  Every time i saw my precriber I sought the oversight of a taper.  Months and months passed by and still I could not secure the oversight I sought to actively document and communicate a plan to reduce and cease Diazepam use.

In August 2018 I had been additionally prescribed Carbamazepine.  I also experienced adverse effects from that medication.  This resulted in the Diazepam dose being doubled to 4mg 3 times per day, 12 mgs daily total (again to mitigate the adverse effect of another psychotropic medication).

The drugs were not helping me to resolve the outstanding issues (e.g. of not being able to look after myself alone anymore), and I hated taking them. I hated their effects (which in hindsight were paradoxical ie.  I suffered relentless agitation/akathisia throughout the period of their use.  The neurotoxic movement disorder/verbal tourettes persisted.  I had gone from being a presentable, sociable human being (even after the attack and my injuries) to become a dribbling, jerking, mess with increasing cognitive deficits - confusion, dizziness, memory loss, lack of focus.

The treatment providers response to my clear deterioration was to . . . increase the medication.

In May 2019 I was told to increase the dosage of Carbamazepine. 

That was my turning point.  I was terrified of ramping up the (paradoxical) effects any further. My treatment providers weren't listening to me.

I decided I would have to take things in my own hands and get off the meds on my own.


3.   Discontinuation process
How did you go about reducing and stopping your long-term use of thIe benzodiazepine or Z-drug medication?
Did you have a particular process? What did that involve?
Did you have help from anyone?


I had been trying for months and months in advance of my taper to get information about how to safely proceed.

I was amazed that I couldn't seem to find information online. 

When I put appropriate words in online search engines all that kept appearing in response were adverts from American rehab or detox facilities, for 28 day programmes that seemed to involve substitue medications.  I live in New Zealand.  I wasn't an 'addict'.  28 days seemed quite abrupt.  And I didn't want to be on any medications.

I had bought some books on line but these didn't provide taper guidelines and they didn't focus on Benzodiapine reduction.

It is possible that forums like Benzobuddies popped up in the search, but at that time it is unlikely I would have looked at them.  I was wary of 'signing in' to anything online.  And I was also wary of online forums.  I had a prejudice that forums could be dangerous and misleading ie. that they might strongly represent the distortions of a minority.

In the end, I made a decision to taper off the Carbamazepine first, and then the Diazepam.

I tapered off the Carbamazepine over 6 weeks in May/June 2019.

I inadvertenly decreased by Diazepam use by one dose around June 2019, as I no longer had the night-time 'cue' of taking the Carbamazepine.

I held on 4mg total for July/August 2019 as I was experiencing new or increaed symptoms (which I now understand were 'withdrawal' effects) eg. burgeoning agoraphobia, photophobia, sociophobia which had not been evident before.

In September 2019 I formally sought oversight from a Psychiatrist for a Diazepam reduction/cessation.  She fobbed me off, saying she would get back to me (in 6 weeks) after she had consulted with her colleagues at the Drug Addiction Department.  Despite being a presciber of Diazepam, she clearly didn't have familiarity with cessation.

So I proceeded by myself, to reduce my Diazepam by half a mg per week from 30th Sept 2019.  This involved splitting my 2mg tablets in half and then quarters, to be able to take a reduced dose. 

By the time I was down to 1mg at the beginning of November 2019, things had really spun out of control for me symptomatically.  I didn't understand what was happening.  And I had no way of knowing that my deteriorating condition was associated with withdrawal.

But by late October, I was desperate.  I thought I was going insane. I had started to experience symptoms of derealisation and depersonalisation and loss of will to live.  It was my partner who suggested that perhaps this deterioration might be linked with my Diazepam reduction.

I was too 'spellbound' and congitively blurred to make the link.  But it made sense.  They symptoms were commensurate with my taper.

And that's when i found Benzobuddies on line.

And that's what changed everything for me.  I think it saved my life.

Finally, I had a resource and some reliable information.  I think I had already found the Ashton Manual, which I was basically following.  But it was Benzobuddies that allowed me to realise that at this rate of symptoms and deterioration in my condition, I needed to slow down my taper.

I managed to secure access to liquid Diazepam (through the pharmacist via the Psychiatrist).  This was a game changer for me.  Pill splitting at reductions less than 1mg were unreliable.  The liquid Diazepam enabled me to complete my taper, more like a slide, than bumping down steps.

I took a further 10 weeks to reduce down from 1mg to 0mg at a rate of approximately .05mg every 3.5 days.


4.   Challenges
What were the biggest challenges to you successfully stopping your long-term use of the benzodiazepine or Z-drug medication?

   1. Lack of information and assistance from the Prescriber/s.  Lack of Knowledge from the Prescriber.
Gaslighting by the Prescriber/s e.g. not acknowledging that 'withdrawal' symptoms were associated with Diazepam taper.  Appropriating other diagnoses for me and implausible explanations to deny the medication harm I was exposed to.

   2. No formal, documented taper plan.  No preparation for what I might expected during withdrawal.  No knowledge guidance and support during withdrawal from an actual provider (versus online community).  My memory and cognition were compromised by Diazepam so in particular for this reason, some kind of reliable guidance, documented plan and schedule with oversight were key (Solved tby trying to construct my own and keep my own record but it took many attempts and was very difficult for me)
   
   3. Difficulties with pill splitting (solved by access to Liquid taper).
   4. Physical symptoms and incapacity.
   5. Psychological symptoms.
   6. Another challenge for me was that I couldn't get my head around some discrepancies in information about duration and rate of taper e.g. I coudn't find or access the research that documented tapers of 10% reduction every 2 weeks, which are touted by many.  The Ashton Manual says something different ie. set reductions and jump off at .5mg    Ashton says 'recovery only starts after the medication is stopped'.  I have been told by some that my taper was too fast (6 months), but I notice that people who take longer don't necessarily have a better result post-taper in terms of ongoing symptoms.  So, it seems like there's a variety of unreliable information about duration and rate of taper.  I coudn't do a 'symptom free' taper because I was having a pardoxical reaction (?tolerance) while I was taking the medication.  I just had to monitor my symptoms as to what felt 'manageable' and slow up if things got worse rather than stabilised or improved.

How did you overcome those challenges?

Lack of Prescriber knowledge and oversight
I had to 'divorce' myself from the prescribers/medical model/treatment providers.  Their denial of what I was experiencing has been profoundly harmful and not conducive to my recovery.  I recognised them to be a hindrance and even a threat to my health and wellbeing and so I had to remove myself from their reach.  I feel very lucky that I avoided their clutches, because I truly believe if I had continued to leave myself in their hands, they would have used the symptoms of 'withdrawal' (medication harm) and labelled me and medicated me into one of their institutions and I then may have suffered the same fate as others who are sidelined, marginalised and die from prescripticide.

I relied on online sources instead.  Through Benzobuddies I became aware of othe sources like Benzodiapine Information Coalition and Alliance and even other online forums, you tube vlogs.  I didn't spend a lot of time on Benzobuddies and i didn't actually find a way to build a network within the forum, but BB was always there to validate my experience, provide information, offer suggestions, and that was vital.

Knowing there were so many other people out there going through the same thing was a huge source of support for me.  It saved me from losing faith in myself, which is what the Treatment Providers would have had me do, seeing as they'd already written me off as 'complex' and 'difficult'.  They imply that I'm 'treatment resistant' when in fact, I'm only 'harm resistant'.  Their medications have harmed me and never helped me.

Physical symptoms. 
I have a stoic disposition.  The thing that enabled me to endure the physical symptms was the reassurance I gained from BB that all these worrying issues were part and parcel of the recovery process and that it wasn't any other more sinister pathology.  That reassurance was the thing that enabled me to endure all of the incapacity and pain and suffering.  "this too shall pass".
   
Psychological symptoms were most intense before I slowed down my taper once I got to 1mg, and luckily the worst of them stopped pretty quickly once I held and slowed down the rate of my taper.
At times the 'withdrawal' (neurological sympoms of medication harm) have felt insufferable and intolerable.  And it is hard to find complete success stories to give me hope.  I was very encouraged by a video posted by an American man who vlogged his recovery.  he came back after 4 or 5 years to apologise for not 'posting' but it was because he was really too busy getting on with his life and it felt better to put the whole benzo thing behind him.  that's the thing I hang on to.


5.   Help/Assistance
What helped or assisted you the most in successfully stopping your long-term use of the benzodiazepine or Z-drug medication?

It has been these things that kept me going.
   1. The unwaivering support of my partner who has taken care of everything included me while I've been so incapacitated. I feel so bad for people who are sick like this and who have noone to care for them and sometimes family who don't really believe them.
   2. The online community who validate my experience and give me access to the information I needed.
   3. That I had some measly level of economic security that meant I have been able to survive financially while so incapacitated.
   4. A personal and requisite attitude adjustment 1: to trust that this too shall pass, and 2: to try and focus on what is good and what I can do, rather than what feels hurtful and all that I have lost and can't do.  I have been bedridden and housebound for most of my post-taper experience.  But I found that I still had access to my imagination, and during my incapacity I spent hours and weeks 'imagining and planning' a garden outside the house.  Which my partner has now planted out. 
   5. Another thing that has been vital to me to help me with succeeding in my taper, even while I've had to suffer all of the onslaught of 'withdrawal' (neurological/CNS damage from medication harm) is some of the benefits I gained from finally not having those drugs in my system anymore.  The first one was an experience of 'inner calm' that intercepted my otherwise constant agitation.  It grew and grew. And now, the windows of calm in my day, take up more space on a good day, than the discomfort of at heightned threat response with the 'on' switch jammed on.  The second one is the clearing of the brain fog.  I stopped feeling constantly dizzy.  I felt clearer in my thinking.  And my short term memory has improved significantly, as has my abiilty to concentrate.  I am so grateful for the return of those things.  My treatmnet providers believed that the agitation was caused by PTSD and that the cognitive deficit was secondary to my TBI.  I believed them.  But now, I have living evidence that they were both caused by the Diazepam.  So much of what I have suffered in the aftermath of an assault was not the attack or the injuries themselves from that attack, but the iatrogenic harm prescribed by physicians.  And that has been the worst trauma for me.


6.   Advice for others
If you were to offer one piece of advice to someone who was currently taking a benzodiazepine or Z-drug medication on a long-term basis, what would it be?

Avoid the attentions and input of medical providers or anyone who undemines you and the process; turn to where you feel supported in what you are doing wherever that may be.  That support and encouragement is vital.


Additional comments or thoughts regarding discontinuation of benzodiazepine or Z-drug use
Feel free to add any additional relevant information.

Thank you for your research Tom and Cathal

My user name on BB refers to something I was told ironically by the Psychiatrist who first prescribed Diazepam to me.  He said "You need to be the agent of your own recovery".  No truer words said. 

« Last Edit: February 07, 2021, 06:07:36 am by [Buddie] »
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Hi Sarah, I saw your message on the eye post and clicked over to see your story. Yes. Our stories do have a lot of commonalities. It's really sad that doctors do things that further complicate traumas. I can only imagine that they simply do not know better in most cases, although I am certain the GP that originally prescribed me benzos did that with the intention of having another in his steady stream of patients. The courts got to deal with him on that. I'm sorry that you have had to deal with the impact of benzos on top of the home invasion and injuries. You are a strong woman to have found your own way out of the nightmare. Thanks so much for reaching out. It does help to find kindred souls.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

I hereby grant Dr. Cathal Cadogan, Lecturer and Research Supervisor, Royal College of Surgeons in Ireland (BenzoBuddies username: [...]) to use my withdrawal- and recovery-related data contained within my Success Story for the study detailed above.

I will be a year free as of March1/21...I am not fully healed yet - but it is so much better and improved and many aspects of a good life have returned. I am now hopeful for my future.

Background information/Guidance for this board

[b]1.   Background[/b]
.
I was prescribed mostly lorazepam/Ativan (there were occasions of trying another benzo, but very brief and always returned to the prior mentioned benzo). My benzo was prescribed for me after my AD stopped working, and I had devastating depression and anxiety. This benzo was continually prescribed to me as doctors tried over 14 different psyche meds to "help" me and also 12 sessions of ect. I stopped trying AD's after being treatment resistant, but continued with benzo. the duration of taking this benzo was 14 months.I took my med as prescribed and never abused it. If anything I always tried to take less than prescribed.

2.   Decision to stop

My sleep was disrupted by nightmares constantly and I would jerk awake every hour or so due to them. This went on for 12 of the 14 months. no-one ever considered it was the benzos. I also had horrific symptoms in the mornings which I later learned was actually interpose withdrawal and tolerance symptoms. In this time I also started to realize that many other meds and supplements would have paradoxical responses which was not my body's norm. About the 12-13th month of taking benzos i started to experience muscle weakness and that I couldn't remember the names of basic plants and things like that. I started to suspect it was benzos and somehow found the presence of mind to look on the internet. This is how I came across the information of benzo harm.


3.   Discontinuation process

I asked my psyche NP about switching to valium to do a slow taper. she was dismissive and stated I should have no problem doing a rapid taper bc I was at a dose of .5 mg or less. At this point I had been in tolerance wd so long and now the med was actually going paradoxical on me.
I informed my husband of my choice and did a very rapid taper over the timespan of about a week.

4.   Challenges

Stopping was not hard for me as I knew it was the drug that was making me so ill. I wanted to be free and I now hated them. The true challenge was getting through the recovery not the actual stopping of the med.
This would take far too long to answer completely on here right now. I've had over 100 symptoms in this recovery process involving mental and physical, all which would sound unbelievable to any other person not having experienced this. Being validated that what you are experiencing is real and you are not crazy is very important in surviving this. The support of others who have successfully come through this is one of the only things that keep you alive - SI is huge symptom in this process. 
I had to find sensory things that helped me to cope and distract, and cling to anything that gave me hope. My faith and my loving family, and friends I made on this online forum were a lifesaver.
I have so  much more I could share..feel free to contact me if you want more specific details.

5.   Help/Assistance

This answered in above response. But also I believe choosing to make sure my diet was supporting the healing process. I ate for brain and gut health. I believe this is crucial to healing.

6.   Advice for others
Get off these meds now. Safely, and with support. This process is the hardest thing you will ever do - but you will be so free once you come through it.

Thank you for the opportunity to share my experience.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.