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My Farewell to Benzo Withdrawal (it’s finally here!)


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It occurred to me yesterday that it was time to say goodbye to this experience.  My 5 1/2 year experience with benzodiazepines. It has taken up way too much of my life and I have decided its time to call it.  It’s done.

 

I can’t pinpoint exactly where things went off the rails.  There were a lot of stressors in my life which I thought I was handling well.  I also had an infection for which I was given MASSIVE amounts of fluoroquinalone antibiotics over 6 months.  I can’t say it was one thing exactly, but years of stress and months of destruction of my gut came to a head in November 2016 manifesting in severe weight loss, stomach and intestinal issues. A visit to a big medical center’s renowned GI clinic gave me a misdiagnosis of gastroparesis and a few prescriptions that I did not take.  There were lots of tests which all came back fine. But the whole debacle gave me anxiety and insomnia, something I had not really experienced in my life prior to this time.  At that point, I was sure something was very wrong with me despite all the tests.

 

A few weeks into it, which included about 10 straight sleepless nights, I went to my GP and he assured me he had the thing to help me.  “It’s a benign drug,” he said.  Klonopin. 1mg at bedtime. 1/2 mg in the morning.  The first week of sleep was great, although I dropped the 1/2 quickly as it made me feel very sluggish and out of it during the day. I had no history with drugs like this and I trusted my doctor.  I was very naive.

 

By week two on klonopin I was having crazy dreams, strange sleep, constant hypnic jerks, twitching, involuntary movements, anxiety, panicky feelings, weird fasciculations and more weight loss (I lost 90lbs during this time). I really was sure something was wrong with me.  After all, I was taking a medication to eliminate these kind of symptoms.

 

It took me about three months to figure out it was the drug, not me.  During that time there was one neurologist visit where I was told I needed more klonopin and extensive testing for epilepsy and other neurologic disorders . . . one visit to a local mental health facility for their DBT day program (between the group session and the head doctor who told me I needed several more drugs, I only made it three hours there) . . . one two week taper that went really well until I hit .125 and all hell broke loose.  And then, like we all do, I searched the internet and found this group. I had been on klonopin for 3 and a half months and I was fully paradoxical and incredibly sick.

 

I knew I needed this drug out of my body.  I rapid tapered over a month and by May 25, 2017 I took my last crumb.  I know that a longer taper is the preferred method of coming off, but for me this was the right and only choice. I think I would have suffered either way, but I am a pull the bandaid off type so it made sense to me. 

 

I had every symptom except seizures. I had horrible akathisia. I had no clue what akathisia was until about 30 months off.  I just knew that like a shark, I couldn’t stop swimming or I would die. For me it was walking. From the moment I got up til the sun went down.  Constant walking for 3 years.  There were days my Fitbit registered 20 miles. Some symptoms were constant, others came and went. I was never bedbound.  I tried incredibly hard to do every single thing I would have done if not in withdrawal.  Travel, volunteer work, dining out, etc.  One of my saving graces was working three days a week on a horse farm.  For me, the physical labor was incredible distraction and really helped me mentally. I made great friends there who listened and understood my situation.

 

As I look back, things began to change after about 30 months.  Glacially slow change, but there was change.  Better at 3 years.  Year 4 I became fully functional and started to feel like me again.  Year 5 has been filled with windows and diminishing waves.  And as the close of year 5 approaches, I can say I am pretty much 95% recovered and the last lingering symptoms I still have are fading out and I am confident they will go completely in time.

 

I won’t go into the hellish details of this experience, as I know you all know how this goes.  There were many times I did not think I would make it.  There were times I wanted it over.  I always had “plan B” in the back of my head.  But there is also a little light in there, telling you to hold on for one more day/hour/second. Listen to it.  It’s not lying. You will make it.  We do heal.  I always thought I would be the one who didn’t.  The exception to the rule.  I was sure there was some, as yet undiscovered, genetic mutation in me that would prevent me from healing. I healed anyway.  Our bodies and brains are incredible if we can get out of their way and let them do what they are made to do . . . heal.

 

Stay away from anything that can mess with your healing.  Stay away from more drugs.  I see so many people who think there is something else out there to alleviate withdrawal. There isn’t and it seems like the adding more drugs just makes it worse (this is based on people I have met and what I have seen anecdotally over the years.) The only way out is through. Eat clean but don’t obsess about it.  Live your life as best you can.  I traveled during my first year with the thought that I can suffer at home or I can suffer at the beach or the lake where the view is better. Your worst enemy in this is fear and unfortunately this injury causes mass hysteria fear.  Don’t buy into it.  Fight the fear as best you can.

 

There are parts of this I don’t even remember anymore.  Sometimes the memories come, but they have no emotion attached, like I read it in a book but it didn’t happen to me. So if you take anything from this let it be hope.  There’s tons of it, even if you don’t feel it right now.  There’s no rhyme or reason to this process so don’t try to make sense of it.  Just try, as hard as it is, to believe you will heal.  And like an angel with a soothing Jamaican accent often says, it doesn’t matter if you believe it or not, you will heal anyway.

 

To my BBF (best benzo friend), I might be writing this story, but I’m not crossing the line without you.  Thank you for always being there, even when I panic text you and you are in the ER.  We just keep marching.

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Thank you for coming back to write your story, you know how important they and you are, you represent hope and you've given it to so many people.  Your advice is spot on, I agree there is no magic pill to make this end, trusting in our amazing body to heal us is the surest way to find peace during this process.

 

You were on the drug for such a short time but you suffered tremendously but I can see your positive can do attitude played a huge role in your recovery.  You're a beacon of light, thank you again.  :smitten:

 

Pamster

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How beautiful this is! I’m so happy for you! Enjoy your new healed self. Say hello to the horses for me.

Well done! Well done!

👍🏼🤗

 

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Congratulations  McS on your 95% healing, it’s a great story thank you for sharing it with us.  Success stories are so important, you will help many people and inspire them to keep on going.  Like you there were many times I did not think I would make it, I was bedbound and I thought after 26 years on this drug, it wouldn’t happen for me, but it did!  I loved your determination in not letting withdrawal stop you doing normal things, well done you!

 

I wish you the best of everything and hope life keeps on getting better for you

 

Magrita :smitten:

 

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Thank you so much for sharing!  I needed to hear this today.  Did you gain back the weight you lost?  What happened with the stomach issues?
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  • 4 weeks later...
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I love reading these success stories, gives me hope!. Can i ask a question ?, how do people find their Anxiety after they are better? And how do you cope with it.
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  • 3 months later...
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Congratulations on your recovery. It got me thinking that perhaps continuing to be active, even through pain, is what accelerates your healing. It's an inspiring story.

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  • 3 weeks later...

What an amazing story. I am 68 years old and into my 20th month of V. My taper took a extremely difficult 3 years and 8 months. I'm absolutely exhausted. I have had to deal with every extreme stress from financial to huge family issues. I have tapered Gabap. and Oxyc. in this time, I truly feel like my brain has packed it in. Thank you for your healing story, it is a true inspiration

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