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Over 60 years old and over 30years of use


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Right there with you guys!  Prescribed them in 1998 for a few panic attacks after the birth of my son.  In hindsight, it was probably nothing more than hormones (and a husband who was of zero help).  Started out at .25 mgs 4 times per day, per doctors orders. This was prior to being able to Google everything under the sun.  I had never heard of Xanax and assumed that is was akin to a Zoloft or Paxil.  I stupidly never questioned it other than asking if it was addictive to which I got a firm "certainly not at this dose" which seemed logical to me since a tiny milligram seemed like nothing!  Ha!  What did I know. 

 

Over the years it was increased.  For about 13 years it treated me well ... or so I thought!  I maxed out at a whopping 6 milligrams and started to question things.  Physically and mentally I was in the best shape of my life but kept feeling really unwell every 5-6 hours.  Could not make heads or tails of it! Started to research Xanax and .... you all know how that went.

 

Years later, here I am, 54 years old, still tapering and praying to be finished the 4 year journey soon!  I REALLY want to live again!

 

Fondly,

Lori

 

PS:  Please forgive my obnoxiously long signature.  It's been with me since day one and I'm keeping it until I jump.  After I do, I promise to shorten it up a bit!  LOL!

 

I read your signature Lori. You have come a long way. I will cheer for you when you finally cross the finish line. :)

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Trode said>>>

A benzo patient's worst fear, my doctor quit and I got a new PCP one week after I retired who told me she would not support continued use, thus began a descent into hell as I tried to get this stuff out of my system, with disastrous consequences.

 

I read your entire post very carefully even tho I only quoted a small snippet. I also fear what will happen to me when my prescribing PCP for over 3 decades finally can no longer be my PCP due to retirement, illness, or death perhaps, so I fully get what you are saying. I am not quite 60 but will be there sooner than I'd like. What you said is also my worst fear too. Even tho I am slightly younger than you, I have been exposed to benzos longer than you. I have bathed my brain neurons in benzos for over 30 years now and my fear also is that I may never be able to fully get off these things and have any quality of life left. Even Professor Ashton said she was not able to get everyone off of these things, but she was able to achieve dose reductions in many of these same ppl. I know what it feels like to lie in bed benzo free writhing in pain, unable to sleep, feeling raw and deathly ill as your whole being cries out in agony. I hate to even think about it. The memory of my CT klonopin experience at a detox facility in 2006 still haunts me to this very day. It was the most traumatic experience of my entire life. As soon as I was discharged, I recall running to my PCP and begging him to put me on valium bc I felt I would literally die if nothing was done.

 

I fully understand trode. Stay on the klonopin as long as you feel you have to. No one can determine that but you, but you should still be able to come here and talk about how you are feeling and continue to give and get support from others. No one here is advocating taking benzos. This is a support group for those of us who have been harmed by these drugs and trying to figure out how to get off and still have some quality of life left  benzo free. Most ppl who have been on these things long-term and are doing fairly ok on these drugs should never be forced to come off like you were. Those ppl often do very poorly when they are forced to withdraw.

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Hello Team Over 60!

 

I am so happy to be in this group! I didn't know how I was going to function without the meds after over 20 years even though I felt so awful on them, until I realized, only by tapering, that my suffering was being on them. Unbelievable what Ambien can do to a person and that doctors don't know it.

 

I am living my new life and it's so much better! I usually do fall asleep and am careful with my routine for sleep. Sometimes I wake up very early but I let it go and live my life and either the next night or the night after I sleep more and better. Incredibly grateful and today I start a new job yet last night slept well and got back to sleep in the middle of the night ... even with such excitement as a new job lol.

 

Yes, I wish I didn't give so much of my life to the meds and the symptoms but I can't really regret it, rather live in the present moment today making it as good as I can. I have had wonderful support on this site and send my Love out to all here.

 

Kachina  :thumbsup:

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One thing I started to do a few years ago was to get my prescribing notes from our visits. I don't mean the "discharge summary" I mean the actual notes. I had my dr close to 35 years. He has been my one and only prescriber.  I trusted him completely. Over the course of 35 years we probably had a total of 3 minutes discussion about Ativan. Nothing of note. So you can understand how I was shocked to start reading his notes in 2019 that we spent the entire visit talking about getting off of Ativan, and that I told him I didn't want to. It made me very sad to see his dishonesty. I think he was starting to cover his Ass. That put the thought in me that maybe there is an issue with Ativan. I started my taper in March 2020. My dr retired in 2021. My new dr in the same practice cut my script immediately. That was fine with me because I had already started my taper. And I had been stockpiling. I truly believe that drs are going to cut off those of us over 65..or worse tell us to go to a psychiatrist to get pills. I am glad I started my taper, and I would encourage those of us on it over 30 years to begin a turtle taper, way before someone decides for you...just my opinion. I am having memory issues and I am hopeful, once I get off of this my memory will be better.
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I truly believe that drs are going to cut off those of us over 65..or worse tell us to go to a psychiatrist to get pills.

 

I think you are 100% correct here. You are smart to try and stockpile so you can still try to taper at your own pace even if some new doc refuses to Rx. Some of these new doctors insist that you get off these things immediately and are actually refusing to prescribe to new patients who have been on this stuff for many years. This is inhumane and should be illegal IMO. You should be allowed to do a slow taper. The doctor should keep prescribing as long as you are slowing going downward in dose.

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Hello Team Over 60!

 

I am so happy to be in this group! I didn't know how I was going to function without the meds after over 20 years even though I felt so awful on them, until I realized, only by tapering, that my suffering was being on them. Unbelievable what Ambien can do to a person and that doctors don't know it.

 

I am living my new life and it's so much better! I usually do fall asleep and am careful with my routine for sleep. Sometimes I wake up very early but I let it go and live my life and either the next night or the night after I sleep more and better. Incredibly grateful and today I start a new job yet last night slept well and got back to sleep in the middle of the night ... even with such excitement as a new job lol.

 

Yes, I wish I didn't give so much of my life to the meds and the symptoms but I can't really regret it, rather live in the present moment today making it as good as I can. I have had wonderful support on this site and send my Love out to all here.

 

Kachina  :thumbsup:

 

Rock on!!! Congrats to you!!!!  :smitten:

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  • 3 weeks later...
[93...]

Hi Gang, hope everyone is doing okay where you are in this process. 

 

My Dr. has been good about prescribing and my micro taper but it's clear that she doesn't understand it. She's young and smart so I had no concerns about her leaving...and suddenly she did.  I got an email on Tuesday that Monday was her last day! Shocking.  Luckily, I had built an adequate stockpile as I tapered so I will be fine and have enough supply to completely taper off.  It is alarming though and something we should all be thinking about. 

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Hi Gang, hope everyone is doing okay where you are in this process. 

 

My Dr. has been good about prescribing and my micro taper but it's clear that she doesn't understand it. She's young and smart so I had no concerns about her leaving...and suddenly she did.  I got an email on Tuesday that Monday was her last day! Shocking.  Luckily, I had built an adequate stockpile as I tapered so I will be fine and have enough supply to completely taper off.  It is alarming though and something we should all be thinking about.

 

As I read these stories, I realize how untrustworthy Drs and their NP's are.

 

I first saw a Dr for years, he got really busy and said an NP would see us.

I saw her for 7 yrs and she was just so chit chatty and nice knowing all along she was quitting....

I came in one day and had a new NP and she said she wouldn't prescribe Xanax.

I told her I was scared and could I go slow?

She was really nasty and said no, I was on a low dose (3 mg) and I'd be fine.

 

I had 3 wks to stop 3 mg a day. C/t it was brutal.

 

So yes, ppl should quit slowly on their own.

 

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[93...]

 

I first saw a Dr for years, he got really busy and said an NP would see us.

I saw her for 7 yrs and she was just so chit chatty and nice knowing all along she was quitting....

I came in one day and had a new NP and she said she wouldn't prescribe Xanax.

I told her I was scared and could I go slow?

She was really nasty and said no, I was on a low dose (3 mg) and I'd be fine.

 

I had 3 wks to stop 3 mg a day. C/t it was brutal.

 

I'm so sorry that this happened to you.  I cannot imagine how scary and awful that was for you.  It's so odd to me that the Dr's do not understand how bad the withdrawal of benzodiazepines can be.  Glad that you are okay. 

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Oh my gosh..I am so sorry this happened to you. Doctors are seeing 30-40 patients a day. They don't keep up on literature, they don't dig into benzo withdrawal, period.  I think what we all have to come to terms with is to not hold onto the hope that any dr will help us slow taper off, especially if your long term prescriber leaves. The problem in my opinion is I didn't even think I had an issue after 35 years on Ativan. Same prescribing dr...never said a word except in passing a few times like"hey,you might think about not taking Ativan every night" And then on to the 6 month script. I would love to hear how all of us long time users are doing on their taper?

 

I continue to use MMJ at night for sleep...It is very helpful. My husband does all of the filing and weighing for me. 14 pills at a time. I think that has been helpful for me. He hands me the pills (which he puts in a capsule) and hands it to me. I only reduce my dose every 3-5 weeks. I have stayed on name brand Ativan this whole time. Same manufacturer. You have to specifically as the dr to say name brand. It is a lot more expensive. Less filler, more accurate in my opinion. I continue to stockpile with my new dr, as the old one retired. She cut my script immediately in half. It is still very hard for me to stay focused on things like reading and to stay motivated. I have some head tremors when I drive but nothing awful. I do not have any sugar other than what's in fruit. I still drink 2 cups of coffee a day.

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Hi Gang, hope everyone is doing okay where you are in this process. 

 

My Dr. has been good about prescribing and my micro taper but it's clear that she doesn't understand it. She's young and smart so I had no concerns about her leaving...and suddenly she did.  I got an email on Tuesday that Monday was her last day! Shocking.  Luckily, I had built an adequate stockpile as I tapered so I will be fine and have enough supply to completely taper off.  It is alarming though and something we should all be thinking about.

 

That happened to me at an early point during my taper. Gotta love stockpiling! It saved my butt :)

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Hi Gang, hope everyone is doing okay where you are in this process. 

 

My Dr. has been good about prescribing and my micro taper but it's clear that she doesn't understand it. She's young and smart so I had no concerns about her leaving...and suddenly she did.  I got an email on Tuesday that Monday was her last day! Shocking.  Luckily, I had built an adequate stockpile as I tapered so I will be fine and have enough supply to completely taper off.  It is alarming though and something we should all be thinking about.

 

That happened to me at an early point during my taper. Gotta love stockpiling! It saved my butt :)

 

It is not uncommon in the U.S. for younger physicians to purchase the private practices of retiring physicians. When this is done, the purchasing physician usually takes over the care of patients from the retiring physician. The patients are often referred to as "Legacy Patients". Here is an article entitled "Caring for Legacy Patients - Standards & Guidelines College of Physicians & Surgeons of Nova Scotia"

 

https://cpsns.ns.ca/resource/caring-for-legacy-patients/

 

"Professional Standards and Guidelines Regarding Caring for Legacy Patients

Preamble

In this document, legacy patients are defined as those whose care is taken over by a physician after treatment was initiated by another provider.

 

The purpose of this document is to guide physicians on the challenges of caring for legacy patients. Physicians must both manage the expectations of legacy patients and independently assess the risk and benefit of their existing treatment plan. These challenges are particularly difficult when involving medication regimes that do not conform to current best practice standards or guidelines.

 

Professional Standards

Physicians must:

 

not refuse to accept patients to their care because of the medical condition of the patient or their treatment plan; and

assess the legacy patient and provide patient-centered care, tailored to the specific circumstances and needs of the patient.

Guidelines

Good care should always consider the individual needs and circumstances of the patient. To provide safe and respectful care to legacy patients in particular, physicians should:

 

consider patient autonomy in shared decision making around treatment expectations. The College encourages the use of agreed upon treatment plans that are documented in the patient record;

regularly review medication regimes and discuss the risks and benefits of medications with legacy patients;

where appropriate, engage the patient in a discussion about tapering of medications to promote a shared decision-making approach;

where appropriate, implement a tapering program that is individualized to patient need and circumstances; and

recognize that tapering is not always possible or appropriate. Vulnerable patients should not be destabilized by the imposition of tapering. There will be circumstances where patients cannot tolerate the effects of tapering or refuse to engage in tapering.

 

Recommended Reading

College of Physicians and Surgeons of Nova Scotia:

 

Initiation of Opioid Therapy for Acute Pain

Professional Standard and Guidelines on Accepting New Patients

AMA Journal of Ethics: 

 

Reider, TN – Is Non-consensual Tapering of High Dose Opioid Therapy Justifiable? August 2020 

Centre for Effective Practice in Ontario:

 

Managing Benzodiazepine Use in Older Adults

The 2017 Canadian Guideline for Opioids for Chronic Non-Cancer Pain 

 

Choosing Wisely Canada

 

Legacy Drug Prescribing Patterns in Primary Care – Mangin, D et al. – The Annals of Family Medicine Vol 16 No 6 Nov 2018

 

Document History

 

Approved by: Council

 

Approved on: October 15, 2021

 

Date of next review: 2024"

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