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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@grandmaj5

Hi @engelee, sadly this is true. It started when I had to find new Psychiatrist (I had been looking before for a very long time). I was supposed to see a male Psychiatrist and a few weeks before my appointment, he retired. There was no one available in my network to see; I am at Aurora Health Care now. In our town, they only have NP/Psychiatrists. They are very booked up, because one of their NP/Psychiatrists quit, and the others had to take her appointments. This is a long boring story. Anyways, the NP/Psychiatric that I am going to see (not until May), had her nurse call me and said that the NP/Psychiatric would not see me unless I tapered off my Clonazepam. When she told me this, I said I had to think about that. I thought about it and realized that she was the only NP/psychiatric I could see. I called back and the nurse told me my tapering schedule for 3 weeks (which never worked and I almost had a nervous breakdown). I have been on Clonazepam for about 10 years. I did not realize the tapering would affect me so bad. Then, I called the NP/Psychiatrist's office and my Internist's office. No one got back to me the entire week. I called back to the NP/Psychiatry and and said my call was urgent. They said the NP/Psychiatry was too busy. They were going to put me through to another nurse. I said that I wanted to talk to the highest person at the clinic. They put me through to the General Manager. Her voice mail came on and I left a message (she never called back). I called the next day and asked again for the General Manager, they didn't tell me this, but they put me through to the Supervisor instead. I explained to her what happened and told her about the Ashton Manual ( believe I wrote about this part before). Before this, when I was feeling so terrible from the tapering, I told my husband that this was enough. I took a full pill and felt so much better. I wrote before how this Supervisor was very defensive and argued with me about the Ashton Manual. She said that they go by "National Guidelines". I told her that I would look that up. In the beginning, When I had heard that this NP/Psychiatry won't see any patients until they are tapered off benzos, I wondered about that too, and didn't think that could be correct. I hadn't seen or spoke to her personally and she knew nothing about me (except that I was taking Clonazepam). I looked on the internet to see if there was something about this; I couldn't find anything. Due to the inappropriate treatment I received from the Supervisor and thinking about the tapering, since joining this group, I am not going to see her, because I believe no one knows about tapering and they don't care. I tried to see a Psychiatrist at a hospital in our town, but Aurora said they don't refer there. The hospital said they don't refer to Aurora. I think this is a very stupid rule. Then, I checked again on the internet and found out that if you are on Medicare and have a supplement that is a PPO you can go anywhere. There are 2 Psychiatrists at the hospital that are taking new patients. I am going to call after Thanksgiving and cancel my appointment with the NP/Psychiatry, I am also going to cancel my new Internist (due to lack of communication or caring). My husband sees an Internist at Aurora, who is more concerned and keeps on top of things for my husband. He is not taking new patients, but said he would take me. So, after Thanksgiving things will change. I hope to get back on track. I am also going to ask if the Psychiatrist and the new Internist know about tapering. I will bring the Ashton manual with me and give each of them a copy. DOES ANYONE KNOW IF THE ASHTON MANUAL COMES IN A BOOK FORMAT? I also found this website that sounded the closest to the generic "National Guidelines" – PubMed.gov. Is is called the US National Library of Medicine/National Institute of Health. Thanks for the question. I am not sure if anyone else had to go through this time-wasting ordeal. I am from Wisconsin, so maybe they have different rules. If they don't, I will have to report this.

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Yes I went through hell trying to find a new doctor after mine dumped me (after 25 years) when I told him I wanted to taper the Xanax he’d been prescribing. Never one time pointed out any dangers. I was so distraught I wound up in the hospital for 3 days. I’ve never been to a hospital with the exception of child birth in 67 years. I was starting to feel awful from the Xanax. Losing weight, crying, having a hard time walking, agoraphobic. And then my doctor dumped me leaving me to search frantically for a new doctor. I live in a large city and have great insurance. It was an ordeal finding a new one let me tell you. My general practitioners office was of no help at all.

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Sorry, I forgot to reply to @lisalucier – Sorry I was to reply to you, since you originally asked the question. Happy Thanksgivnig! See reply to @engelee

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@grandmaj5

Hi @engelee, sadly this is true. It started when I had to find new Psychiatrist (I had been looking before for a very long time). I was supposed to see a male Psychiatrist and a few weeks before my appointment, he retired. There was no one available in my network to see; I am at Aurora Health Care now. In our town, they only have NP/Psychiatrists. They are very booked up, because one of their NP/Psychiatrists quit, and the others had to take her appointments. This is a long boring story. Anyways, the NP/Psychiatric that I am going to see (not until May), had her nurse call me and said that the NP/Psychiatric would not see me unless I tapered off my Clonazepam. When she told me this, I said I had to think about that. I thought about it and realized that she was the only NP/psychiatric I could see. I called back and the nurse told me my tapering schedule for 3 weeks (which never worked and I almost had a nervous breakdown). I have been on Clonazepam for about 10 years. I did not realize the tapering would affect me so bad. Then, I called the NP/Psychiatrist's office and my Internist's office. No one got back to me the entire week. I called back to the NP/Psychiatry and and said my call was urgent. They said the NP/Psychiatry was too busy. They were going to put me through to another nurse. I said that I wanted to talk to the highest person at the clinic. They put me through to the General Manager. Her voice mail came on and I left a message (she never called back). I called the next day and asked again for the General Manager, they didn't tell me this, but they put me through to the Supervisor instead. I explained to her what happened and told her about the Ashton Manual ( believe I wrote about this part before). Before this, when I was feeling so terrible from the tapering, I told my husband that this was enough. I took a full pill and felt so much better. I wrote before how this Supervisor was very defensive and argued with me about the Ashton Manual. She said that they go by "National Guidelines". I told her that I would look that up. In the beginning, When I had heard that this NP/Psychiatry won't see any patients until they are tapered off benzos, I wondered about that too, and didn't think that could be correct. I hadn't seen or spoke to her personally and she knew nothing about me (except that I was taking Clonazepam). I looked on the internet to see if there was something about this; I couldn't find anything. Due to the inappropriate treatment I received from the Supervisor and thinking about the tapering, since joining this group, I am not going to see her, because I believe no one knows about tapering and they don't care. I tried to see a Psychiatrist at a hospital in our town, but Aurora said they don't refer there. The hospital said they don't refer to Aurora. I think this is a very stupid rule. Then, I checked again on the internet and found out that if you are on Medicare and have a supplement that is a PPO you can go anywhere. There are 2 Psychiatrists at the hospital that are taking new patients. I am going to call after Thanksgiving and cancel my appointment with the NP/Psychiatry, I am also going to cancel my new Internist (due to lack of communication or caring). My husband sees an Internist at Aurora, who is more concerned and keeps on top of things for my husband. He is not taking new patients, but said he would take me. So, after Thanksgiving things will change. I hope to get back on track. I am also going to ask if the Psychiatrist and the new Internist know about tapering. I will bring the Ashton manual with me and give each of them a copy. DOES ANYONE KNOW IF THE ASHTON MANUAL COMES IN A BOOK FORMAT? I also found this website that sounded the closest to the generic "National Guidelines" – PubMed.gov. Is is called the US National Library of Medicine/National Institute of Health. Thanks for the question. I am not sure if anyone else had to go through this time-wasting ordeal. I am from Wisconsin, so maybe they have different rules. If they don't, I will have to report this.

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The Ashton Manual is a part of the National Health System in the United Kingdom, and not something normally listed in the USA as something to be followed. We have many people on here who are from other English speaking countries of the world. Each country has there own idea of what is right. The guidelines in the USA are now benzos are supposed to be used only 2 weeks. Many drugs have changed in what is expected of the prescription as doctor's find out things themselves. The FDA requires testing of new drugs for short periods, but in reality they may end up being used very long term. An example are antidepressants that were tested for 6 months. I have been taking them for decades. Without them I would probably be dead from suicide. With them I can live a fairly normal life.
It is too bad that there are not enough np/psychiatric to be able to give you decent service. The shortage is nationwide and even in other countries. Psychiatrists used to do it all, but then insurance companies said no a np should do it. In many states the np must get the approval of a psychiatrist to change or add medications, thus adding to the time to get a service in psychiatry. Many psychiatrists are not interested in being an overseer, but want to deal with the actual patient. Thus many have retired and not many new people want to start. The states have been quick to approve these changes. I really do not understand that. Usually these changes go through without much publicity so the average person never even knew they occurred. You are right in stating that plain Medicare allows you to have any doctor that is accepting Medicare. However because Medicare reimburses doctors at much lower rates than the general public, some doctors do not accept Medicare. Medicare advantage and supplement plans are different. They usually require you to see doctors within their plan.

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@lisalucier

That sounds like a long time on the medication, @lhspem. How did you happen to decide to taper?

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Hi @lisalucier I have a question. I have been on Clonazepam for 10 years 3 mg daily. Can someone still stay on Clonazepam, if they feel they really need it? I recently tapered (on my own) to 1.5 mg a day, which I feel will be enough for me (I was told to totally taper off). I feel that if I do not take Clonazepam at all, my symptoms will return stronger – PTSD, depression, anxiety, and anxiety attacks. The anxiety is very strong on my mom's side. My grandma had to lay down on the back seat when my grandpa drove to Florida. My mom ended up in the hospital due to anxiety, 2 sisters did too, and my daughter. My aunt had it, my cousins, and more relatives. My mom was anxious on her honeymoon and said she couldn't see herself in the mirror. When I was a teen, I had an attack one morning and had to put a bag over my mouth to breathe. My mom called the doctor, and he told her to give me one of her valiums. I truly believe it is a gene in our family and that I need "some" Clonazepam. I am thinking why did they make Clonazepam? I know it is for short-term mostly and that now they are finding negative things about it. I have been on it long-term and I really feel it helps. It is not a craving, but actually helps me live my life better. I got panic attacks a lot. I still get some panic attacks. I was shopping and the whole store started spinning. I had to get down on the floor and put my head down until it went away. I don't think anyone saw me, because I was between the women's clothes. Many times, I would be shopping and I knew I had to leave the store. My daughter has bipolar I. She has to take medications to stay stable. She also takes Clonazepam. Her bipolar came from her dad's side (which must be a gene). I never knew how many of his relatives had bipolar disease. He is my ex-husband. Everyone kept it a secret. I believe that my daughter also got some of my anxiety problems that go with her bipolar disease. In the past, I had been tried on other Benzos, but they were either too strong or didn't do anything. I guess I just feel that we know our own body the best and what actually works for us. I feel that tapering totally off Benzos is kind of mean for doctors to do, especially when they don't feel what you feel and plus most don't know how to taper, making others worse.

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@johnhans

The Ashton Manual is a part of the National Health System in the United Kingdom, and not something normally listed in the USA as something to be followed. We have many people on here who are from other English speaking countries of the world. Each country has there own idea of what is right. The guidelines in the USA are now benzos are supposed to be used only 2 weeks. Many drugs have changed in what is expected of the prescription as doctor's find out things themselves. The FDA requires testing of new drugs for short periods, but in reality they may end up being used very long term. An example are antidepressants that were tested for 6 months. I have been taking them for decades. Without them I would probably be dead from suicide. With them I can live a fairly normal life.
It is too bad that there are not enough np/psychiatric to be able to give you decent service. The shortage is nationwide and even in other countries. Psychiatrists used to do it all, but then insurance companies said no a np should do it. In many states the np must get the approval of a psychiatrist to change or add medications, thus adding to the time to get a service in psychiatry. Many psychiatrists are not interested in being an overseer, but want to deal with the actual patient. Thus many have retired and not many new people want to start. The states have been quick to approve these changes. I really do not understand that. Usually these changes go through without much publicity so the average person never even knew they occurred. You are right in stating that plain Medicare allows you to have any doctor that is accepting Medicare. However because Medicare reimburses doctors at much lower rates than the general public, some doctors do not accept Medicare. Medicare advantage and supplement plans are different. They usually require you to see doctors within their plan.

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Allo f this is quite sad . Nurse Practitioners in a # of states have gotten laws passed where the MD
Supervision is not necessary.

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@grandmaj5 these guidelines are just for the most part. As I stated previously, States are able to make their own laws regarding drugs as long as they are starting with the Federal law. In other words states may have stricter rules. I do not know what the rules are for benzos in WI. Maybe you can do a search on WI law, but it might be a good idea to consult an attorney. There is wrong info on the Internet. I only report this info and am not giving an opinion. The only thing was that I couldn't understand why changes to laws concerning what doctors are supposed to do were passed without any real debate. I too believe I have a genetic defect that causes depression and anxiety. My doctor also believed I had an element of manic depressive, but enough to be diagnosed with it. Keep checking because you may find a way to still get clonozepam. If not, I did go off of it without any problems. I just had to increase my antidepressant.

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@lisalucier

Hi, @engelee – have you had the experience of tapering off a benzodiazapine? If so, which one, and how did it go?

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Yes, but it was very short-lived. I continue to take clonazepam to help me with my anxiety at night.During my child hood I was the only child of 2 people who married and each had children——“blended family”. I dearly loved all my brothers and sisters. However.
My parents, esp. mother had some trauma and mental health issues. Many of their disputes became crazily violent. I was never, ever brought into it, but I was the only “adult” in the house. I would wake up at night and hear terrible fighting, the other thing my Mom did ( which I’ll never understand) was wake me up in the middle of the night and yell at me for something I did. I never understood what the issue was. As a result nighttime continues to very subtlety cause me anxiety. So, I take clonazepam . I think my CNS is so hardwired for trauma response that I wouldn’t trust being off of it. Mind you my mom and dad were both physician and nurse and they took good physical care of me —-the emotional part was missing. I do still pray for them and love them.

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@engelee

Allo f this is quite sad . Nurse Practitioners in a # of states have gotten laws passed where the MD
Supervision is not necessary.

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@engelee you are right. Some states have allowed nurses to do their own prescribing. If doctors have not been very vigilant in catching problems with drugs, how much less likely are nurses. While giving NP the authority to prescribe has gotten rid of the bottleneck, it opens us up to now getting our medical care from nurses instead of doctors. Sounds like something from a third world country.

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I totally disagree as I am a Clinical Nurse Specialist—this is different from nurse practitioner. As CNS my masters was totally concentrated in Adult Mental Health & Psychiatry ( no other iarea). I had extensive reading of primary psych texts ( like MD), thesis in prep for PhD and supervised work everyday throughout education with adult,family,groups,( multiples of these throughout day) I was educated on how to supervise others at my level and had MDs on my Thesis Committee. I have published, written a textbook, presented my work nationally and internationally and # of yeRs consecutively attended a Harvard conference on Psychopharmacology. I know when to visit with MD colleague.

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@johnhans

@grandmaj5 these guidelines are just for the most part. As I stated previously, States are able to make their own laws regarding drugs as long as they are starting with the Federal law. In other words states may have stricter rules. I do not know what the rules are for benzos in WI. Maybe you can do a search on WI law, but it might be a good idea to consult an attorney. There is wrong info on the Internet. I only report this info and am not giving an opinion. The only thing was that I couldn't understand why changes to laws concerning what doctors are supposed to do were passed without any real debate. I too believe I have a genetic defect that causes depression and anxiety. My doctor also believed I had an element of manic depressive, but enough to be diagnosed with it. Keep checking because you may find a way to still get clonozepam. If not, I did go off of it without any problems. I just had to increase my antidepressant.

Jump to this post

@johnhans Thanks for your information. I'm doing the tapering myself to half my dose. I just wish the doctors would understand that some people may still need benzos. Some doctors are tapering patients off incorrectly. Sometimes, I wonder if they want patients to completely get off, but what is the plan after? None of my doctors discussed that part. Are they thinking of prescribing another medication? That is mainly what I am worried about. I am afraid I will get over-anxious again and that feels terrible. The doctors I am working with are just saying "get off" (but then what)?

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@johnhans

@grandmaj5 these guidelines are just for the most part. As I stated previously, States are able to make their own laws regarding drugs as long as they are starting with the Federal law. In other words states may have stricter rules. I do not know what the rules are for benzos in WI. Maybe you can do a search on WI law, but it might be a good idea to consult an attorney. There is wrong info on the Internet. I only report this info and am not giving an opinion. The only thing was that I couldn't understand why changes to laws concerning what doctors are supposed to do were passed without any real debate. I too believe I have a genetic defect that causes depression and anxiety. My doctor also believed I had an element of manic depressive, but enough to be diagnosed with it. Keep checking because you may find a way to still get clonozepam. If not, I did go off of it without any problems. I just had to increase my antidepressant.

Jump to this post

The AI was working overtime on this reply. At the beginning it should be: "These are guidelines." Then further down it should be: "The doctor also believed I had an element of manic depressive, but not enough to be diagnosed with it." That not makes a big difference in what I was stating.

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@grandmaj5

@johnhans Thanks for your information. I'm doing the tapering myself to half my dose. I just wish the doctors would understand that some people may still need benzos. Some doctors are tapering patients off incorrectly. Sometimes, I wonder if they want patients to completely get off, but what is the plan after? None of my doctors discussed that part. Are they thinking of prescribing another medication? That is mainly what I am worried about. I am afraid I will get over-anxious again and that feels terrible. The doctors I am working with are just saying "get off" (but then what)?

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Exactly. I don’t think there are any plans. I’m going to taper but I’m scared to death as to what the future holds in terms of my horrible anxiety.

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