Author Topic: We are still collecting posts for this research study - please share!  (Read 24802 times)

[Buddie]

Background information/Guidance for this board

A research study is being conducted by researchers in the Royal College of Surgeons in Ireland and Trinity College Dublin. We are looking to collect written accounts of success stories from members of the BenzoBuddies community who have previously taken benzodiazepines or Z-drugs on a long-term basis (>3 months) and successfully stopped their use of the medication. These stories could help in identifying important barriers and facilitators that that are relevant to people who are trying to reduce and stop their long-term use of these medications.

If you are happy to have your success story included in this study, please post it on this board. A number of suggested headings are provided below to help you structure your post. However, you don't have to cover all these points and you are free to include any additional relevant information about your success story. If you have previously posted to the 'Success Stories' thread, please feel free to add it to this thread to have it included in the study. You may wish to update any previous post based on the points below, however, this is not essential.

When posting your success story, please observe the following guidelines:
-   You should have successfully stopped taking benzodiazepines or Z-drugs and maintained this for at least two months;
-   You should be (mostly) recovered from your experience;
-   Do not include any identifying information in your post.

All information collected as part of the study will be treated in a confidential manner. Your account name will not appear in any reports or publications that result from this study.

If you have any further queries about this study, you can message the study co-ordinators directly through the BenzoBuddies forum or email them:
   Tom Lynch, Pharmacist and PhD candidate, Royal College of Surgeons in Ireland (email: tomlynch@rcsi.ie)
   Dr. Cathal Cadogan, Senior Lecturer and Research Supervisor, Trinity College Dublin (BenzoBuddies username: [...], email: cathal.cadogan@tcd.ie)


Information to include in your post
To help in structuring your post, you may wish to consider using headings 1-6 below. However, this is not mandatory. You are free to structure your post according to your own personal preference. Trigger questions have been included under each heading for your convenience, but you don't have to cover them all and you are free to include any additional information that you wish.

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?

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?)

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?

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?

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

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?

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

NOTE: Please read the follow-up post from [...] below before posting to this thread.
« Last Edit: July 03, 2021, 08:58:43 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]

Please note: The study, detailed above, lead by Dr. Cathal Cadogan ([...]) of the Royal College of Surgeons in Ireland, is authorised by BenzoBuddies as legitimate and of value to our community and its members.


For your story to be inclused within the study, please observe the following three points:
  • You may submit your Success Story to the study by one of following methods:

    • Preferably, post a new Success Story utilising the suggested template from cardisainmdom

    • Post authorisation to this thread for your Success Story to be included in the study - please include a link to your Story thread

    • (If you have one) update your existing Success Story by adding a new, updated post (optionally, utlising the suggested template)

    • Or, simply 'bump' your existing Success Story with a short post and explanatory note.

  • Irrespective which of the four submission types you employ from the above, you must include (as the first line in your post) the following block of text:


  • You also must meet the following criteria for your submission to be included within the study:

    • Your Success Story may be submitted only via this board/area at BB (you may not submit it privately via PM or email)

    • You should already be a member of BenzoBuddies and have posted at least twice at the forum before the announcement of the study

If you post a fresh Story and you would like it merged later (when the study is complete) with your existing Success Story, please add this request to your submission.

In anticipation of a positive reaction from our members, thank you all for your interest and participation. And a big thank you to Dr Cathal Cadogan too for your interest in benzodiazepine withdrawal and creating this study.
« Last Edit: January 16, 2021, 08:10:49 pm 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]

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.

Driving in the Left Lane, [...]'s story of healing and hope

I wrote this Success Story in January of 2013, many years ago. You are welcome to use it and if you require additional information please let me know.

[...]
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 [...],

Thank you for agreeing to have your story included in this study!

For any other BB members who have previously posted a success story on this board and would be happy to have it included in this study, please use the same approach that [...] has used above. We need your permission to include any previous posts in this study.

Alternatively, anyone with a success story to share can add it to this thread to have it included in this study.

The more stories we get the better as this will help us to identify barriers and facilitators to successfully reducing and stopping long-term use of benzodiazepines/Z-drugs. Our ultimate goal with this research is to use all of the information we collect to develop support strategies to help others who want to reduce and stop their use of these medications.

Please consider sharing your story and feel free to get in touch if you have any questions.

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]

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 wrote my success story in early November, 2017.  http://www.benzobuddies.org/forum/index.php?topic=191732.0

I added the additional information you are requesting below and most of it is already included in my Success Story.

1.   Background
Briefly describe your history of benzodiazepine or Z-drug use.
What benzodiazepine/Z-drug(s) were you taking?  I started with Xanax and switched to Klonopin for the first 3 months.  Did a CT with no ill effects and then went back on Xanax 6 weeks later.  Switched to Temazepam and ended with a few days of Valium before a final CT that led to a significant WD experience. 
What was it prescribed for? Sleep/insomnia
How long you were taking it for? Total time on Benzos = 6 months

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?)
Found Benzobuddies forum and decided that the Benzos were the root cause of all my symptoms and severe insomnia

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?
Did a Cold Turkey under the advice of my PCP.  He said I wasn't on Benzos long enough to worry about a seizure and said there's no such thing as Benzo WD and even if it is real, it only lasts a week or two, tops.

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?  The biggest challenge was the temptation to reinstate during the worst part of my healing/recovery process.  It was tempting to reach for an Rx drug or Benzo after not sleeping for 3 or 4 nights in a row and experiencing debilitating symptoms on top of the little to no sleep.

5.   Help/Assistance
What helped or assisted you the most in successfully stopping your long-term use of the benzodiazepine or Z-drug medication?
Reading Success Stories on this forum and getting hope/reassurance from others that "made it through" and recovered.

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?
Benzos are for short-term (2-4 week max) use.  They are merely band aids and don't cure the condition for which they are prescribed.  They are merely a crutch used in our "fast food" society to offer quick relief for anxiety, insomnia, etc.  However, almost all of the time, Benzos demand payment without mercy in the form of a mild to severe WD after they are stopped for most people.
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 [...],

Thank you for adding your story to this thread!

For any other BB members who would like to have their story included in this study but haven't previously posted on the Success Stories thread, you could follow a similar format to the post by [...] above (or, alternatively, use whatever format that you prefer).

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]

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.

After trying several antidepressants for sleep problems I was eventually prescribed Ativan (Lorazepam) 0.5 - 1mg q hs for sleep. It worked really well. I slept for twenty years. I mostly used Ativan 1 mg. rather than 0.5mg. I was nt aware of any significant problems other than the fact that I couldnt tolerate alcohol without getting bad headaches. I often felt sluggish/ sedated until I got my morning coffee. If I got up at night I could easily return to sleep. A few years befor tapering I had a colonoscopy. The I.V. sedation Versed didnt work. I nearly jumped off the table more than once and a second dose was given. Still a lot of pain. I was told by a different gastroenterologist that the Ativan prevented the sedation from working and at my next colonoscopy  was given Propofol instead and it worked. I ws still on Ativan at this time.

 2. I read that regular Ativan can lead to Dementia and i resolved to come off it. Also I was hearing that friends were being warned by their physican that they could only use it short term. My Family Physician kept prescribing it. When I researched its use online I found BB.

3. On BB I read about DLMT and was helped with the taper dose by a wonderful BB person called "builder" Otherwise I did it by myself. I was so happy to begin the process and had no doubt I would be successful. I have had many challenges in life and  successfully overcame them. I would succeed .

4.A challenge for me was that I had retired and our plan was to travel quite a bit. I had to figure how to do this while doing a liquid taper
   using vodka.

5. The most important thing to my success apart from having a huge wish to stop the drug was doing a very slow liquid taper over thirteen months. I often held the dose if I was travelling or having significant withdrawal symptoms.

6.My best advice is to be determined to succeed and to GO SLOWLY.

Additional comments: I have been off benzos for thirteen months. I still have sleep problems. It is up and down. I can easily fall asleep but only get 4-5 hours. I often get up for a while and then return to sleep if I can. I use cbd or thc oil (legal here) at times. The last two weeks I feel an improvement and have had better sleep. Other withdrawal symptoms have long gone with the exception of occasional intrusive thoughts. I expect that these would be less of a problem if we were not dealing with covid lockdown and so many restrictions on lifes pleasures eg. travel.
Feel free to  use my previous posts.
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 [...],

Thank you for contributing to this study!

To all other BB members who are interested in adding to this research, each of the posts above provide great examples of different ways in which you can have your success story included in the study. The more success stories that are added to this thread, the more we can learn from your experiences and hopefully find ways to help others in the future.

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]

Bumping this for members who may have missed it the first time around ...

Here is a link to the introductory post about this research study:

http://www.benzobuddies.org/forum/index.php?topic=250579.msg3187012#msg3187012

Here is a link to a message from [...] (BenzoBuddies founder) about the study:

http://www.benzobuddies.org/forum/index.php?topic=250579.msg3187020#msg3187020
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.

My success story can be found in my signature. 
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.