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What I Wish I Had Known About Benzo Withdrawal Before My Taper

by Jennifer Leigh | Aug 12, 2019 | Recovery

 

Looking back over the last eight years, there are things I wish I had known before I started this journey. Here are five of them, listed in no particular order.

 

1. I wish I had known the full extent of the medical communities ignorance about benzodiazepines. Had I understood, I may have avoided some of the suffering I endured at the hands of uneducated doctors. I would have never agreed to take a benzo in the first place. Nor would I have tried to taper as fast as my doctor suggested. I also would have disregarded the advice about taking other psych meds to alleviate withdrawal symptoms (they didn’t and thank God I didn’t stay on any!) and I would have totally shut down the doctors who told me that my benzo withdrawal symptoms that lasted for so long were my “underlying anxiety disorder.” They weren’t. I don’t have an anxiety disorder. If you aren’t yet aware that the medical community isn’t usually “benzo-wise,” please learn that now. It may help you to avoid some suffering. And, while I’m at it, let me say that the medical community is not 100% educated or accurate about a lot of things. We have to do our own homework and not blindly trust. Be your own advocate. Ask questions. And better yet, avoid unnecessary medical interventions if you can.

 

2. I wish I had known that my recovery was going to take quite some time. I remember coming home from the hospital after I was cold turkeyed off of my benzo and thinking that I’d recover in six months of less. Everyone in the benzo community said that six to eighteen months is the average, so I assumed I’d heal quickly. I had already invested eight months into a taper before I was cold turkeyed, so I couldn’t imagine being benzo sick for much longer. Boy, was I wrong. Some of us take a long time to heal. That doesn’t mean that we are suffering every day, but it does mean that we are symptomatic from time to time to one degree or another. It’s not a bad thing that some of us take longer than others, nor should it be something to fear. It just is what it is. There isn’t any way to know how long your recovery is going to take, so just take it one day at a time. Don’t worry about the days that go by. Know that you are healing and that one day, you will close the chapter on benzo withdrawal and go on your merry way.

 

3. Since my recovery took some time, with two pretty intense set-backs, one at three years off and the other at six years off, I wish I had some way of knowing beforehand how much I’d grow and learn from being in benzo withdrawal. No one told me that I’d become more spiritually mature, or that my capacity for empathy and compassion would grow. No one told me that I’d evolve into the person I always hoped that I could be. No one told me about the silver lining of benzo withdrawal. All I heard in the beginning and through the first year or so was negativity from other sufferers. But, finally, I began to see the growth that was taking place within me. If no one has ever told you that you’ll learn and grow and become an amazing person for having gone through benzo withdrawal, let me be the person who tells you that. Keep your heart open and allow this healing process to make you better, instead of allowing it to make you bitter.

 

4. No one told me that I’d lose so much. Maybe it was better that I didn’t know the extent of my losses, but I wish I had at least been prepared for them. I had financial losses, relationship losses, career losses, physical losses, and more. Benzo withdrawal impacts all aspects of our lives. For some of us, that means we lose some things that are dear to us. We lose things that we feel define us. (For example, I had been a thought-leader in my field and had been on radio and television before benzo withdrawal. Without my ability to work or the recognition I was used to, I wondered who the hell I was.)  I lost the ability to take care of myself, my looks (I even shattered five teeth), my creative abilities, etc. It’s important to know that Benzo withdrawal is often accompanied by loss, and we may better navigate our losses if we build a loving community to help us navigate those losses. It helps to know that our losses will one day shift and we will begin gaining what we lost and more. (See number three above.) I now feel that I have gained far, far more than I lost in benzo withdrawal, but while I was in the thick of it, the losses were an enormous source of pain and anguish.

 

5. No one told me how isolated and alone I’d feel in benzo withdrawal. There was perhaps no way for me to know how my friends and family were not going to be able to understand the medical nightmare I was living through. No matter how much I tried to explain my symptoms, no one really understood. I wrote email after email, or made phone call after phone call, begging for help from friends and family. Usually, I was told to “think good thoughts,” or worse, “go see a doctor.” The degree in which benzo withdrawal is so misunderstood is mindboggling. Get cancer (I hope not!), people will bring you food and ask to help. Lose a loved one? You’ll have people sharing their sympathy with you. Go through benzo withdrawal? You’ll most likely have to educate those around you about the syndrome and educate them as to what you need. Which, of course, is exhausting to have to do on top of the already exhausting work we have to do to just get from one day to the next in withdrawal. But, until benzo withdrawal goes mainstream in the pubic’s awareness (and I think that one day it will!) we are left to cope without much support from people who haven’t gone through benzo withdrawal. If we understand this, perhaps we don’t feel so let down by the people we hope will lift us up.

 

There are so many other things I wish I had known before I started my “getting benzo free journey.” But I had to learn things as I went along. There isn’t a crash course for recovering from benzos. And, maybe that’s best. We all have to stretch and grow in our own ways as we recover. The one thing that I had heard before I started tapering and my subsequent cold turkey, was that we heal. In time. Many, many, many, times I doubted it. My healing was so up and down and sideways, that I thought for sure I would never, ever, heal. I was wrong. My nervous system is better now than it was pre-benzos. I am not anxious. I don’t have panic attacks anymore. I’m grateful, and full of awe and wonder every day. You will be too, in time. Keep healing. It’s worth whatever effort you must make. It’s worth whatever you may think you’ve lost along the way. Life after benzo withdrawal is incredibly rich and sweet. You’ll get here!

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Thanks for this post.  Jennifer is insightful and continues to help many.  I am not sure I would have wanted to know what w/d could or did involve.  I wouldn't have believed parts of it anyway.  I am still on my journey and already see the growth' she mentions.  Can't say it is all worth it yet...but I believe it will be!
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Thanks for your post, DoveLuv!

 

I wish I had known everything before the first Ativan, but I'm not sure I could have comprehended all the pitfalls that benzos carry - certainly not the insane anxiety and panic, doctors' disbelief, the dizziness, vertigo, the loss of friends, the unbelieving family, the financial woes, the solitary life, the agoraphobia, the adrenaline rushes - I could go on and on. I used to look at the pill and think it was so small, how could it cause such problems? I've since found out a heck of a lot.

 

I hope it's all worth it, but I WOULDN'T EVER want to repeat the process! And I'm sure you wouldn't either.

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I empathize with those who have families to support and other responsibilities who go through cessation efforts from the long-term use of benzos and who believe their lives will continue as normal with only some personal symptoms of withdrawal.

 

Cessation from the long-term use of benzos may result in devastating effects to not only the patient but also upon the lives and well being of the their families, their friends, their careers and everything else in which the patient was previously connected and participating.

 

Many who attempt benzo cessation are often prescribed other substances to ease cessation effects and then end up being poly drugged which may result in compounding the problems already faced by patients, their families, their livelihoods, etc.

 

There are no easy solutions for long-term use benzo patients. I believe people should be well informed before beginning or attempting to cease the long-term use of benzos.

 

Best Wishes

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Yep...I agree.  I needed the specific medical information regarding use and w/d.  When I was researching early on, I stayed away from the scary sites that actually were telling me the truth.  I didn't know that at the time.  I read the medical site info that down played the length of taper and w/d.  Even my doc said a month or so. The addiction specialist took me off in 6 days. There were my expert resources.  What a dangerous trap.

I am moving on.  The damage has been done all the way around.  But I have to move past and put the pieces back together.  Doing pretty well considering.  Here is to one more day further along!

Yes, I would love to ensure that this never happens to anyone...ever....again!  We are not even close... but hopefully soon. 

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I empathize with those who have families to support and other responsibilities who go through cessation efforts from the long-term use of benzos and who believe their lives will continue as normal with only some personal symptoms of withdrawal.

 

Cessation from the long-term use of benzos may result in devastating effects to not only the patient but also upon the lives and well being of the their families, their friends, their careers and everything else in which the patient was previously connected and participating.

 

Many who attempt benzo cessation are often prescribed other substances to ease cessation effects and then end up being poly drugged which may result in compounding the problems already faced by patients, their families, their livelihoods, etc.

 

There are no easy solutions for long-term use benzo patients. I believe people should be well informed before beginning or attempting to cease the long-term use of benzos.

 

Best Wishes

 

That's the true tragedy of these pills. Many have been broken, finances in tatters, have paid with their lives. None of this is disclosed at the outset. And, yes, I'm one of many people who have been polydrugged. It can be a very long road back.

 

I sometimes wonder just how much the benzo community has financially supported the medical monolith. It's got to be a ton with all the ER visits, doctor visits, hospitalizations, pills, etc.

 

Thank you for your post, Fi!

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Yep...I agree.  I needed the specific medical information regarding use and w/d.  When I was researching early on, I stayed away from the scary sites that actually were telling me the truth.  I didn't know that at the time.  I read the medical site info that down played the length of taper and w/d.  Even my doc said a month or so. The addiction specialist took me off in 6 days. There were my expert resources.  What a dangerous trap.

I am moving on.  The damage has been done all the way around.  But I have to move past and put the pieces back together. Doing pretty well considering.  Here is to one more day further along!

Yes, I would love to ensure that this never happens to anyone...ever....again!  We are not even close... but hopefully soon.

 

I think this is what we all need to do. I did very stupid things, not realizing the potency of the benzos. I was very naive. I was on one forum where the mantra was basically "don't read the Internet" because there were scary things said about the drugs. But now I realize it was the truth. It's very hard to believe that we go through so much in this process.

 

It sounds like you're on a good road now after a very bumpy ride, DoveLuv!!  :thumbsup: :thumbsup:

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Fi, Dove, and others,

 

I was doing a bit better, now awful, and stuck on small amounts but my health is oging through the floor with all this.

 

Where would you go, or who to talk to, about whether to keep going off...  I also thought, yes, some suffering then on with my life.

 

Gues some 40 years of benzos that is not to be.

 

I hope you will reply; totally isolated and this is not living.

 

thx

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You could get an appointment to speak with Jennifer. She charges $50 for either 1/2 hour or an hour. I forgot which. She's been through two horrible setbacks but now, I've read, feels better than ever. I've thought of making an appointment to talk to her. She seems easy to talk with and would be understanding. I've thought of her because she's now 8 years out, and it wasn't too long ago that she had a setback. I've been at this 5 and a half years and have rarely had a window, so I get pretty down at times.

 

Baylissa is another person who would be very easy to talk to. She's been talking to benzo people for years and has heard it all. I don't know much about her fees.

 

Above all, though, you've just got to stay with it. I've been through a lot, too, and so have many others, and there's a tendency to want to give up and throw in the towel because of the symptoms. I've been through this so many times and have thought of what ending my life would be. But I have a son who has been through hell and back with me. I can't go through with it because of him. It DOES get better, that I know, but it can take a long time.

 

I think talking to someone would give you a renewed faith in all this. It takes a ton of faith, resilience, and sheer strength inside to get through it. GOOD LUCK to you!!! :smitten: :smitten:

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Thanks, Terry

 

Yes also have thought of that, and no real reason to carry on.

 

Jennifer being a dr. could probably talk more about tapers or whether to taper; Baylissa will not give taper advice at all I believe.

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Jennifer is not a medical Dr.  She has her doctorate in psychology, I think.  I did a 30 minute session with her.  She also has a morning group.  Check out her website.  D.E. Foster also interviewed her on benzofree.org.  Check her out Barbara.  See what ya think.
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Yep...I agree.  I needed the specific medical information regarding use and w/d.  When I was researching early on, I stayed away from the scary sites that actually were telling me the truth.  I didn't know that at the time.  I read the medical site info that down played the length of taper and w/d.  Even my doc said a month or so. The addiction specialist took me off in 6 days. There were my expert resources.  What a dangerous trap.

I am moving on.  The damage has been done all the way around.  But I have to move past and put the pieces back together. Doing pretty well considering.  Here is to one more day further along!

Yes, I would love to ensure that this never happens to anyone...ever....again!  We are not even close... but hopefully soon.

 

I think this is what we all need to do. I did very stupid things, not realizing the potency of the benzos. I was very naive. I was on one forum where the mantra was basically "don't read the Internet" because there were scary things said about the drugs. But now I realize it was the truth. It's very hard to believe that we go through so much in this process.

 

It sounds like you're on a good road now after a very bumpy ride, DoveLuv!!  :thumbsup: :thumbsup:

 

Thanks for posting this Terry.

Much appreciated.

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Hey, cs123, good to hear from you!!! I was reading that you're on the last part of your Librium taper!!!  :thumbsup: :thumbsup: Well done!!!

I miss your enlightening posts but realize that you have your own life to live. THANK YOU for your excellent contributions!!! :smitten:

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Hey, cs123, good to hear from you!!! I was reading that you're on the last part of your Librium taper!!!  :thumbsup: :thumbsup: Well done!!!

I miss your enlightening posts but realize that you have your own life to live. THANK YOU for your excellent contributions!!! :smitten:

 

Hi Terry yes.  Thanks.

Slow and steady wins the long long marathon of a race :)

 

I hope you are doing well.  It’s always nice to hear from you.

 

-cs123

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You could get an appointment to speak with Jennifer. She charges $50 for either 1/2 hour or an hour. I forgot which. She's been through two horrible setbacks but now, I've read, feels better than ever. I've thought of making an appointment to talk to her. She seems easy to talk with and would be understanding. I've thought of her because she's now 8 years out, and it wasn't too long ago that she had a setback. I've been at this 5 and a half years and have rarely had a window, so I get pretty down at times.

 

Baylissa is another person who would be very easy to talk to. She's been talking to benzo people for years and has heard it all. I don't know much about her fees.

 

Above all, though, you've just got to stay with it. I've been through a lot, too, and so have many others, and there's a tendency to want to give up and throw in the towel because of the symptoms. I've been through this so many times and have thought of what ending my life would be. But I have a son who has been through hell and back with me. I can't go through with it because of him. It DOES get better, that I know, but it can take a long time.

 

I think talking to someone would give you a renewed faith in all this. It takes a ton of faith, resilience, and sheer strength inside to get through it. GOOD LUCK to you!!! :smitten: :smitten:

 

Yes, BenzoBuddies has been very, very lucrative for Jennifer.

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How do you know it's lucrative? She's trying to make a living like everyone else.

 

She's doing what she knows about and is very good at it. I've thought of having a session with her because she's 8 years off. She was on BB for awhile after her most recent setback, which was, I believe, in year 6 off benzos. I learned a lot from her posts. She has good, solid information. At least someone is here in the U.S. who knows what she's talking about. It's so hard to find anyone who has knowledge. I've stopped going to 3 people who never understood what we're going through. We're very fortunate to have her, and there are too few people doing this.

 

I can imagine the work is very draining, though, because there is so damned much suffering. It has to be a special type of person who can withstand that. I think Baylissa talked about that, too. She is also a very special person helping with this. Bless them!!!

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Yes Terry..I too have had a tough time finding therapist who have knowledge in this area.  All therapists have to charge a substantial fee for their service if they want to pay the rent and eat.  Last time I checked, making a living wasn't unethical. I sure wish insurance would cover 'web sessions' with therapists.  The standards and licensing requirements are the same for therapist who have skype sessions available.  My insurance hasn't caught on yet.  I think some companies do cover web consults and counseling at an out of network reimbursement. 
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Anyone tried online therapy?  There are a few big companies but have not done but since am up weird hrs and can't drive now may give it a go.  Any experiences?
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I do, too, wish insurance covered web consults. It would be so easy. We need all the help we can get!!

 

I agree Terry. This would be a great help to many doing a slow taper and/or in the process of recovery.  The main insurance carriers , to my knowledge, don’t comply in this manner.....

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