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What to say to prescribers, doctors, therapists


[CK...]

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I’m looking to start thread on short, concise, professional input or links to such, about the needs and difficulties patients face with the benzodiazepine withdrawals/BIND dilemma. As we know, many, many medical professionals are completely unaware and, perhaps unintentionally, causing harm to their patients regarding benzodiazepines. Many of us have been labeled hypochondriacs, nutters, addicts, overly-sensitive and/or non-compliant. Anything except what we are - responsible patients trying to safely discontinue benzodiazepines, which have harmed our bodies in ways even WE cannot fathom!

 

I believe we will only be taken seriously if we present the facts as calmly, clearly and professionally as possible. The medical community sees themselves as professionals and I don’t believe they will respect opinions from laypeople. Unfortunate, but true. They certainly haven’t listened to us, their patients, and we know far more than they do about benzodiazepine withdrawals.

 

Please feel free to add any links or scientific evidence beyond the Ashton Manual, perhaps best saved for after an explanation is given for needing to discontinue ON OUR TERMS.

 

I have seen a few decent videos from BIC, but many are quite long and doctors are notoriously rushed.

 

I’m grasping at straws here because I am completely exhausted from trying to explain the situation to my many doctors. Benzodiazepines affect our entire CNS and almost all organs of our bodies. We do not live in a bubble. Other illnesses happen and each doctor must be educated in order for us to stay safe. I would posit that “withdrawal” is almost a disease or a syndrome in itself and its only treatment seems to be time, clean living and cooperation.

 

As I said to a friend, if we were suffering from any other major illness or life-altering, chronic condition, people would be setting up go fund me pages, running 5ks and wearing wrist bands for us. All we wish for is some respect and help from the same industry that put us in this situation. Some decent research wouldn’t hurt either.

 

Please post longer personal stories in the appropriate forums here. I just deleted anything really personal because I’d like this to be more reference based. Thanks ahead!

 

I hope everyone is surviving.

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I think this is a really really important topic and I relate to this so much. I have been invalidated so many times during this process by the medical community.

 

Sometimes I have the thought that the calmer I am in front of them then the less I will be believed cause I “look so normal” so there is no way I can be having all these physical symptoms.

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This is a decent video, but it’s far too long. I’m wondering if anyone has YouTube downloading capabilities. I think editing down in sections would help. This is from 2019, but these are professionals. I would edit first speaker, RB Rafa MD and the one patient speaker. They are excellent and professional. Dr. Wright, as well, but perhaps too much on addiction. The other speakers did not really suit our needs. Perhaps someone could take a look. Either way, it’s an eye opener, albeit lengthy.

 

BENZODIAZEPINE WITHDRAWAL SYMPOSIUM 2019

 

BIC has some decent videos, but many are also quite long.

 

I hope if we get a good collection of links, we can set up a clean thread to pull from.

 

Thanks, all!

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You’re welcome.  The deprescribing document is also excellent.  It was written by prescribers for prescribers.  It is clear, concise, current and evidence-based.

 

If you are in the US, sharing the 2020 FDA Black Box Warning for benzodiazepines might be a real eye-opener for prescribers and therapists (many of them do not appear to be aware of it).  For example, here’s the warning for clonazepam:

 

The continued use of benzodiazepines, including clonazepam tablets, may lead to clinically significant physical dependence. The risks of dependence and withdrawal increase with longer treatment duration and higher daily dose. Abrupt discontinuation or rapid dosage reduction of clonazepam tablets after continued use may precipitate acute withdrawal reactions, which can be life-threatening. To reduce the risk of withdrawal reactions, use a gradual taper to discontinue clonazepam tablets or reduce the dosage (see DOSAGE AND ADMINISTRATION and WARNINGS). 

 

Source:

DailyMed - CLONAZEPAM tablet

https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=8069b1a0-7c06-4252-b44e-e2eef065d9b8

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You’re welcome.  The deprescribing document is also excellent.  It was written by prescribers for prescribers.  It is clear, concise, current and evidence-based.

 

If you are in the US, sharing the 2020 FDA Black Box Warning for benzodiazepines might be a real eye-opener for prescribers and therapists (many of them do not appear to be aware of it).  For example, here’s the warning for clonazepam:

 

The continued use of benzodiazepines, including clonazepam tablets, may lead to clinically significant physical dependence. The risks of dependence and withdrawal increase with longer treatment duration and higher daily dose. Abrupt discontinuation or rapid dosage reduction of clonazepam tablets after continued use may precipitate acute withdrawal reactions, which can be life-threatening. To reduce the risk of withdrawal reactions, use a gradual taper to discontinue clonazepam tablets or reduce the dosage (see DOSAGE AND ADMINISTRATION and WARNINGS).

 

Source:

DailyMed - CLONAZEPAM tablet

https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=8069b1a0-7c06-4252-b44e-e2eef065d9b8

 

Yes! Doctors don’t read the BB labels. 🙄 Good to include that and I did ask my prescriber if she’d read it. No. I neglected to mention your first link. Apologies. I swear, these doctors are so rushed I doubt whether they’d read beyond the first paragraph. I like the videos if they’re well done, but I wish they weren’t all so long. I watch everything at 2x the speed.

 

Thanks, Libertas!

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I think you are on to a looser certainly in UK. I took copy Ashton Manual down when she took me off zopiclone, she ignored all the advice from nice forced me CT. When things git really bad recently after flu jab got told I was beyond their capabilities. Referred to a psych, who refused acknowledge meds plus flu jab caused this told me had to go on anti psychotics treated me  was loopy, kept saying wasn’t normal to have intrusive thoughts. Think they are concerned with being sued so refuse acknowledge withdrawal exits.
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I think you are on to a looser certainly in UK. I took copy Ashton Manual down when she took me off zopiclone, she ignored all the advice from nice forced me CT. When things git really bad recently after flu jab got told I was beyond their capabilities. Referred to a psych, who refused acknowledge meds plus flu jab caused this told me had to go on anti psychotics treated me  was loopy, kept saying wasn’t normal to have intrusive thoughts. Think they are concerned with being sued so refuse acknowledge withdrawal exits.

 

Well, you are obviously mental. 😡 (sarcasm) I’d sue over a CT before I’d sue over a slow taper. We just want to get off these drugs!

 

This is why the correct information needs to be presented to them in a concise, calm, professional manner. Short to begin with. Of course they think we’re all insane hypochondriacs. They should know better, but I believe they believe what they were taught in med school about benzos: nothing. Nothing was really known!

 

I’m surprised Ashton isn’t more accepted in the UK. It’s the gold standard for now, but unfortunately, or fortunately, she chose not to hard publish it and that lowers the credibility factor. Ridiculous, but I believe it’s true. It’s quite sad.

 

Check some of the above links. Maybe send to the doctor who CTd you. Evil!

 

This is why we don’t share info with our prescribers. They simply do not understand nor do they wish to educate themselves. All I can say is take care of yourself as best you can. I’m so sorry that happened to you.

 

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I'm looking to start thread on short, concise, professional input or links to such, about the needs and difficulties patients face with the benzodiazepine withdrawals/BIND dilemma. As we know, many, many medical professionals are completely unaware and, perhaps unintentionally, causing harm to their patients regarding benzodiazepines. Many of us have been labeled hypochondriacs, nutters, addicts, overly-sensitive and/or non-compliant. Anything except what we are - responsible patients trying to safely discontinue benzodiazepines, which have harmed our bodies in ways even WE cannot fathom!

 

I believe we will only be taken seriously if we present the facts as calmly, clearly and professionally as possible. The medical community sees themselves as professionals and I don't believe they will respect opinions from laypeople. Unfortunate, but true. They certainly haven't listened to us, their patients, and we know far more than they do about benzodiazepine withdrawals.

 

Please feel free to add any links or scientific evidence beyond the Ashton Manual, perhaps best saved for after an explanation is given for needing to discontinue ON OUR TERMS.

 

I have seen a few decent videos from BIC, but many are quite long and doctors are notoriously rushed.

 

I'm grasping at straws here because I am completely exhausted from trying to explain the situation to my many doctors. Benzodiazepines affect our entire CNS and almost all organs of our bodies. We do not live in a bubble. Other illnesses happen and each doctor must be educated in order for us to stay safe. I would posit that withdrawal is almost a disease or a syndrome in itself and its only treatment seems to be time, clean living and cooperation.

 

As I said to a friend, if we were suffering from any other major illness or life-altering, chronic condition, people would be setting up go fund me pages, running 5ks and wearing wrist bands for us. All we wish for is some respect and help from the same industry that put us in this situation. Some decent research wouldn't hurt either.

 

I hope everyone is surviving.

 

I posted earlier a new post in regards to my new Psychiatrist. We spent about three hours together. The Psychiatrist for 4 years before her made some dangerous choices just after I had a Cervical surgery again- She held back my meds which theoretically could have killed me- I studied the Mental rights here and Medical patient rights in general. A crime was committed and It took lot to get to Thursday with the new Psychiatrist. The other doc disappeared-

 

Basically she is younger and really mad me aware she would do nothing with my meds unless we discuss it in length and as a patient we have the legal right to understand fully what they mean and to have them understand us with topics being studied if needed. We can be Candid and we dont need to be intimated but respectful of course.

 

She doesn't even want me to try to withdrawal as its been 35 years on Klonopin for the most part- She promised to always get me Brand when possible and to never change any of my meds unless we have a plan and agree and discuss in full- I can have her put on paper and sign if needed and do the same.

 

We do look normal generally speaking and I can't believe I made it through the old days not knowing what was going on or where to turn and went through hell like the others. I dont even want to try anymore until they have guidelines for us to withdrawal. Benzos are the only drug that have no guidelines. She was up on her stuff but I know a lot is them being carful because its a liability to have me there and I need pain pills when I have surgeries and that's almost a no- no but she said we have to both be open. So next time we meet we have a late appointment and ill let her lead.

 

My point if this fits this subject is to follow our rights - print them out and bring them if needed. Hire an Ombudsmen. File grievances when needed - ask to change Doctors over and over if needed until someone listens- Our rights our powerful and they work for us- We need there help an when we are polite and they brush us off its easy to get discouraged but they cannot defeat us and many dont, they just dont understand. But bring documents and questions and give them links to all that people are sharing on here.

 

They dont have the option to tell us to hurry up as we go back to mental rights/ patient rights/ Especially mental- They are simple but carry weight and we only have to be polite but let them know when we aren't clear on something or when they are not believing us- Right stuff on paper and have them sign that they will read.

 

Basically a good doctor like mine so far - say they need us because they dont know what we feel and they can only learn by what we say we are experiencing.

 

Thankfully in the mid 90's I was in Disability for a for years but once they cancelled it I spent 10 years appealing 3 cases that I new I had no chance and finally told the attorney this is too stressful- ALL my records and theres and the judges and their behind the scene stuff showed up on my porch one day- I have almost 35 years of detailed records from Doctors everywhere.

 

I have accessed Portals everywhere and I have all my Mari's and Ct's of Brain and Cervical spine and personal notes and tons of stuff- I'm organizing it but its difficult but its stuff Doctors today cannot deny or say I'm making up. I share a few things but not a lot - just very important records- Ill make copies and send them ahead of time to Doctors- Ill email them at times- This way I know they know what I'm talking about and it saves times- When Docs are jerks about it- I leave kindly- file a grievance - report them to the state board- Then i ask insurance for another opinion and as for it to be expedited 72 hours instead of 30 days or 15 days for approvals because my health is at stake now- I dont lie but that's a right when it true-

 

Basically ALL Doctors have to understand our need and move forward by laying clearly their plan out and take 10 minutes or so to answer our questions- Always bring somebody- When I file grievances- they dont remember the visit because it means it was a short brush off- appeal their answers and they will come back with a different answer just forward it all to the State Medical Board.

 

I hope this sort of makers sense and helps in any way?

 

If I can be of any help please let me know

 

Best of luck!!!

 

 

 

 

 

 

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I think this is a really really important topic and I relate to this so much. I have been invalidated so many times during this process by the medical community.

 

Sometimes I have the thought that the calmer I am in front of them then the less I will be believed cause I “look so normal” so there is no way I can be having all these physical symptoms.

 

Thanks for chiming in. It is very important! I hear you on appearing “normal”, but I’ve also heard horror stories from others who went off the rails. It’s not easy. ❤️

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apaulo13,

 

I’m sorry that happened to you. I am hardly a pushover, but my main goal is cooperation and respect. I think it’s best to approach with honey if one can. We want these doctors on our side. That said, everyone should advocate for themselves as they see fit and yes, it helps to have an additional set of eyes and ears. I wish you the best in your battle and journey. It’s not easy.

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apaulo13,

 

I’m sorry that happened to you. I am hardly a pushover, but my main goal is cooperation and respect. I think it’s best to approach with honey if one can. We want these doctors on our side. That said, everyone should advocate for themselves as they see fit and yes, it helps to have an additional set of eyes and ears. I wish you the best in your battle and journey. It’s not easy.

 

Thank you CKing56-

 

I believe I will start a weaning as last week- I found two Klonopins on the floor as they fell out of the Bubble pack and I didnt even notice any change- I take 21 a week so Im just putting two aside per week and moving forward- I have 2400mg Gabapentin Ive been breaking pieces off- 90mg Cymbalta I just 60 one day 3o the next. Its been unnoticeable- Adderall Im just pouring out a little here and there and will be off in a couple weeks-

 

Be cause I ve some underlying stuff- I know that Ill never be off the Klonopin as it helps aggitation and im ok if I get down to .5 tid in 5 years-

 

I just am not going to ever go CT and learned the hard way but have a god Doc tor it seems- I advocate in a all areas of my health politely but factually-

 

I hope I can help- as I get helped on here.

 

 

 

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  • 4 weeks later...

I think this is a really really important topic and I relate to this so much. I have been invalidated so many times during this process by the medical community.

 

Sometimes I have the thought that the calmer I am in front of them then the less I will be believed cause I “look so normal” so there is no way I can be having all these physical symptoms.

 

Someone told me yesterday that the reason I am not believed is because "I seem so competent." So you are correct.

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