Any positive stories about Benzo tapering? I need hope

Posted by sears @sears, Nov 9, 2019

Would love to hear some positive stories from people whom have tapered off benzos. Positive only please. Give me some hope. No horror stories! I need some encouragement!

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@sears

I did research attorneys taking on benzo cases. According to what I had been reading it would be very difficult to win a benzo case. I put it to the test and gave my info to a group of attorneys online. They sent me a reply that they would NOT be interested in taking my case.

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What recourse do we have? We are victims.
Thank God for my gastroenterologist who told me that I would have cramping when decreasing use of Clonazapam..... NOT due to GI issues.
Perhaps there is an attorney who was prescribed a drug that affected memory and mood: a group lawsuit? That might get prescribers attention.

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@grandmaj5

Hi Ellen, When I called to make my appointment, they said you cannot see the NP Psychiatrist unless you taper off your clonazepam. I told her I would think about it and call back. I waited and called back, because there was no one else to see at the clinic. This NP Psychiatrist can't see me until May 2020 (I already mentioned that somewhere else). I called the clinic today (they never called me yesterday) to complain about all of the miscommunication. Yesterday and today I asked for the manager. Today, they put me through to the supervisor, but they didn't tell me it was the supervisor. I told her about the quick taper; that I got very sick from doing this. No one ever called me back after I called when I wasn't doing well. I told her about the Ashton Method of Tapering. The person that answered the phone yesterday, made me feel like a liar, when I told her about the 3-week tapering. I had it written down, as it was told to me by a nurse. She asked who the nurse was; I didn't know. She said no one would have given me a 3-week taper. After that, I found the nurse's name, so today, when I spoke the supervisor, I told her the name. I explained everything to the supervisor. I told her I don't feel like I am being taken care of. I said that I am a customer too. She said for the tapering, they follow the suggestions of the National Guidelines. I told her I am going to look it up. I cannot believe that when a patient calls (I'm sure not everyone) they get fluffed off. They make you feel like you did something wrong. They also don't have any empathy, instead, it is like an argument. I told her that if she felt like I did during the 3-week taper for just 1 minute, she would understand. I have such a hard time when I come across situations like this. It is a waste of time and nobody cares (some do). I would never treat a person like that. I would listen and speak in an understanding voice, and take care of the patient's complaint. I also told her that I was her, I would go above and beyond to help. I am just tapering myself because I got so sick.

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Did they give you a copy of “the national guidelines”?

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@sears

They may not have known many many years ago. True. But they have known for a very long time. The problem is that most don’t want to get involved in the tapering process. It can be very hard for some people and require a lot of their time getting patients through the process if done correctly. So they just leave you on. It was my idea to taper, which was when I was basically abandoned by my doctor.

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Prescribe but have no plan for us to stop taking a drug that causes dependence! !

I asked my resident nephew to call the doctor. The doctor told me that my nephew had very good ideas!
???!!!

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@helenfrances

What recourse do we have? We are victims.
Thank God for my gastroenterologist who told me that I would have cramping when decreasing use of Clonazapam..... NOT due to GI issues.
Perhaps there is an attorney who was prescribed a drug that affected memory and mood: a group lawsuit? That might get prescribers attention.

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I’m betting there are attorneys out there who’ve been through what we’re going through. If anyone knows one that would like to get involved let us know!

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@helenfrances

Prescribe but have no plan for us to stop taking a drug that causes dependence! !

I asked my resident nephew to call the doctor. The doctor told me that my nephew had very good ideas!
???!!!

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Can you share a few of his ideas? Pitiful a resident has to come up with a plan but lucky you have him!

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@grandmaj5

Ellen, you are correct about no documented information about withdrawal. I am on Lamictal. My last Physician stopped it "cold turkey" with no warning; no one told me this was going to happen. I was very upset about this and filed a complaint to Medicare. I am going to file another complaint with the State. This Physician also made other errors, and my Clinic Report had 23 errors. I was unable to get Lamictal, so I had to (would have anyways) quit the bad Physician and quickly got a new prescription from a new Physician. Then I was told to taper off Clonazepam for 3 weeks by the NP/Psychiatry who I won't see until May. I was having horrid withdrawals; I could not function. It was almost the same withdrawals as Lamictal, but worse. I was very shaky and out to eat with my husband. I had to order a hot chocolate with Bailey's; I don't drink. It did calm me down. My heart was racing fast. Again, I could hardly do anything. I called the Behavioral Health Clinic and my Internist's office; no one ever called me back. I called Behavioral Health again and said my call was quite important. When I spoke to the Clinic Supervisor to tell her what was going on with this mess (by this time I was feeling better and doing my own tapering), I told her about the Ashton Manual and she didn't care. I told her that if she had my withdrawal symptoms for 1 minute, she would understand. I am staying on Clonazepam and tapering myself. I am taking a half dose daily and so far doing okay. I really do not think I should be totally off the Clonazepam, due to being very anxious. I am just worried when it comes time for a refill.
I know my new Internist won't prescribe it, due to the NP/Psychiatrist. They say that tapering Benzodiazepines is worse than tapering Opioids. I guess I just don't understand how things are being done now. Some Physicians are not taking the time to learn about this. Like I said, if they felt the same symptoms of withdrawal, they would quickly look up everything about tapering for themselves.

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Be careful with the tapering! The last small dose is usually the hardest to stop. This would be where you would need an understanding doctor to help you through. Everyone is so different when it comes to tapering it may not bother you at all. My doctor said there really are some people that just stop, no withdrawal, nothing.

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@helenfrances

We should start a support group.
There are groups for many medical conditions..
Do we have anyone who has leadership skills to organize? There is power in numbers.

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There are groups out there. One is called benzo buddies. My advice is to stay away from these. One horror story after the other. I seriously think a lot of people in these groups have severe mental problems or make these horror stories up just to be a part of something.

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@grandmaj5

Hi Sears: I am starting to think that many Physicians have no clue about tapering and they are just "Stupid". They just want to make money and not bother. There has to be something out there telling patients what Physicians to go to for tapering. Of course, my town is smaller, so there is probably no one. There are also Pharmacopsychiatrists, but rare to find. I found one once, but he was too far to drive. There should be a mandatory class(s) Physicians attend to learn everything about this. I always thought Physicians wanted to know more and gain knowledge. I am beginning to think many Physicians are too lazy or to busy to want to learn more.

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I live in Kansas City, Missouri. I live two blocks from the Kansas stateline so I have easy access to both states. Kansas is a wealthy state with lots and lots of doctors. It took me months and a lot of mental anguish trying to find a doctor to help me taper after I was abandoned by my Physchiatrist of 25 years when telling him I wanted to taper Xanax. I almost had a complete breakdown. I wound up in the hospital for almost 3 days. Couldn’t sleep , couldn’t eat. I was in shock my doctor dumped me and trying to find another doctor to help was a nightmare. He gave me a 30 day script for the Xanax I had been taking for 25 years and refused to take my calls. Yep! This is what they do to you!

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@sears

I did research attorneys taking on benzo cases. According to what I had been reading it would be very difficult to win a benzo case. I put it to the test and gave my info to a group of attorneys online. They sent me a reply that they would NOT be interested in taking my case.

Jump to this post

They would be up against the powerful AMA?
The American Medical Association?
Big Pharma?

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@grandmaj5

Ellen, you are correct about no documented information about withdrawal. I am on Lamictal. My last Physician stopped it "cold turkey" with no warning; no one told me this was going to happen. I was very upset about this and filed a complaint to Medicare. I am going to file another complaint with the State. This Physician also made other errors, and my Clinic Report had 23 errors. I was unable to get Lamictal, so I had to (would have anyways) quit the bad Physician and quickly got a new prescription from a new Physician. Then I was told to taper off Clonazepam for 3 weeks by the NP/Psychiatry who I won't see until May. I was having horrid withdrawals; I could not function. It was almost the same withdrawals as Lamictal, but worse. I was very shaky and out to eat with my husband. I had to order a hot chocolate with Bailey's; I don't drink. It did calm me down. My heart was racing fast. Again, I could hardly do anything. I called the Behavioral Health Clinic and my Internist's office; no one ever called me back. I called Behavioral Health again and said my call was quite important. When I spoke to the Clinic Supervisor to tell her what was going on with this mess (by this time I was feeling better and doing my own tapering), I told her about the Ashton Manual and she didn't care. I told her that if she had my withdrawal symptoms for 1 minute, she would understand. I am staying on Clonazepam and tapering myself. I am taking a half dose daily and so far doing okay. I really do not think I should be totally off the Clonazepam, due to being very anxious. I am just worried when it comes time for a refill.
I know my new Internist won't prescribe it, due to the NP/Psychiatrist. They say that tapering Benzodiazepines is worse than tapering Opioids. I guess I just don't understand how things are being done now. Some Physicians are not taking the time to learn about this. Like I said, if they felt the same symptoms of withdrawal, they would quickly look up everything about tapering for themselves.

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The Medical profession has the AMA.
We need an Association. Name?
Any ideas?
There is power in numbers.
Is anyone an attorney?

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