Protracted Benzo withdrawal

Posted by aarniek @aarniek, Oct 30, 2016

Taken of 8mg of Ativan daily in 3 weeks and suffering terribly nearly 4 years now! Unable to walk ,have insane muscle tightness,no memory,tinnius is unbearable,unable to picture things in my mind ! After 45 months it’s worse than ever and 2 neurologists have tried only medications which all made me even worse!

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Hello, how are you now? Are you able to walk? When was your turning point in terms of symptoms? Thanks.

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@creatineboy

Believe me,I understand. It i stuff. ,whatever form it takes,all that. I recently stopped klonipin after about 10years. I know you are leery of taking other meds, but so far I've tried neurontin and lopressor to help, and Robaxin for the muscle tightness,it really works.
I use a noise maker and an air purifier for background noise.
They say there's a reversal drug called Flumazenil, it is an antibenzo benzo. Returns your chemistry in your brain to right,but it has to be done in a hospital by titrated IV.
Hope you're doing well

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Has anyone had experience with Flumazenil?

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@kevk74

But how are you now. I was clonazepam 2mg 1x/day at night. I tapered over 12mths+ approximately, but came in with a 22mg/mth 6mth avg which is arguably a little “hot”. 0.75mg ain’t nothing so… K pin is “king” as they say. Supposedly the Cadillac of benzos. NOPE. They are all bad, bad, news. I got really hurt. REALLY hurt, I didn’t even REALIZE 45-60 days out that I took major damage. SEVERE Internal tremor, tinnitus as loud as a freigh train 24/7 that is permanent. 40+ real symptoms. All these things 9mths ZERO medications. The Aston Manual is right. Everything. It’s a living nightmare trapped in your own body. The medical community is ignoring this. I can’t find a doctor that knows a damn thing about it 4 years later. Moderator take notice.

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Just out of curiosity, how long did your taper take?

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Was prescribed Valium over 10 years ago and began tapering last year following the Ashton Method very closely. It had become apparent that any benefit I was receiving was being outweighed by side effects. I have just completed this process a few weeks ago.

I'm pleased to have done this but am worried by how "raw" everything still feels. My cognition is way better but I still feel very anxious. I know it will take many more months as my nervous system adjusts however I am feeling very scared. I see danger everywhere even when I know it doesn't exist. I am very scared to drive on the highway fearing accident or death. This is new to me.

I have heard that benzodiazepam withdrawal symptoms are exacerbated because the limbic system is affected. Is this the case? If so, do you know (1) if there is anything I can do about it and (2) how long it is likely to last?

Thankyou.

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@basilfawlty

Was prescribed Valium over 10 years ago and began tapering last year following the Ashton Method very closely. It had become apparent that any benefit I was receiving was being outweighed by side effects. I have just completed this process a few weeks ago.

I'm pleased to have done this but am worried by how "raw" everything still feels. My cognition is way better but I still feel very anxious. I know it will take many more months as my nervous system adjusts however I am feeling very scared. I see danger everywhere even when I know it doesn't exist. I am very scared to drive on the highway fearing accident or death. This is new to me.

I have heard that benzodiazepam withdrawal symptoms are exacerbated because the limbic system is affected. Is this the case? If so, do you know (1) if there is anything I can do about it and (2) how long it is likely to last?

Thankyou.

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There isn’t much you can to about it. Your doc may offer something to replace the Valium and then you’ll become dependent on that med. There is no help for benzo withdrawal. It could take years for you to feel even halfway normal. Thanks to all the doctors that kept us dependent on these crazy meds for so many years.

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@basilfawlty

Was prescribed Valium over 10 years ago and began tapering last year following the Ashton Method very closely. It had become apparent that any benefit I was receiving was being outweighed by side effects. I have just completed this process a few weeks ago.

I'm pleased to have done this but am worried by how "raw" everything still feels. My cognition is way better but I still feel very anxious. I know it will take many more months as my nervous system adjusts however I am feeling very scared. I see danger everywhere even when I know it doesn't exist. I am very scared to drive on the highway fearing accident or death. This is new to me.

I have heard that benzodiazepam withdrawal symptoms are exacerbated because the limbic system is affected. Is this the case? If so, do you know (1) if there is anything I can do about it and (2) how long it is likely to last?

Thankyou.

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Hi @basilfawlty and welcome to Mayo Clinic Connect. So glad you were able to find us and connect. Tapering off of any benzo can be extremely difficult, just like @sears said. My heart goes out to you and everything you are experiencing.
You will notice that I moved your post to a discussion that has been going on for quite some time now about benzo withdrawal. I did this so you could connect with people like @field12, @yellowmoon, and @sears.

I see that you followed the Ashton method. Exactly how long did you taper and at what doses? Was you physician involved with this tapering?

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@amandaa

Hi @basilfawlty and welcome to Mayo Clinic Connect. So glad you were able to find us and connect. Tapering off of any benzo can be extremely difficult, just like @sears said. My heart goes out to you and everything you are experiencing.
You will notice that I moved your post to a discussion that has been going on for quite some time now about benzo withdrawal. I did this so you could connect with people like @field12, @yellowmoon, and @sears.

I see that you followed the Ashton method. Exactly how long did you taper and at what doses? Was you physician involved with this tapering?

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The Ashton method is very good but does need to be adjusted at times to suit an individual’s needs. It can be a little fast for some. Just hold if necessary and cut again when you feel better. Tapering Benzos is not a race. Take your time. I personally know of some that have taken 3-4 years to taper. It it was it is. Make yourself as comfortable as possible. You were prescribed these drugs by a doctor you trusted. This is your prescribers fault not yours. There is a lesson to be learned from all our misery. Never ever blindly listen to your doctor. Do your own research before taking ANY prescriptions. Find another doctor if you have to. At the end of the day these docs could care less about us.

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@amandaa

Hi @basilfawlty and welcome to Mayo Clinic Connect. So glad you were able to find us and connect. Tapering off of any benzo can be extremely difficult, just like @sears said. My heart goes out to you and everything you are experiencing.
You will notice that I moved your post to a discussion that has been going on for quite some time now about benzo withdrawal. I did this so you could connect with people like @field12, @yellowmoon, and @sears.

I see that you followed the Ashton method. Exactly how long did you taper and at what doses? Was you physician involved with this tapering?

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Hi Amanda.
Thanks for moving my post to the appropriate area and thanks also to Sears for your advice 🙂
I officially started my taper in late November 2021 and completed it in the first week in June 2021. I say 'officially' as I spent some months prior to that structuring my dosage to get it to a regular amount per day. Until then I had been taking Valium on an "as required basis" which would be often 1x5mg tablet per day, sometimes nothing for a few days, and up to 6x5mg tablets per day when in "a crisis". This was discussed over many years with my treating GP and psychiatrist.
Looking back, and having read more in the past 6 months, I realise this means I would regularly take nothing then something then nothing then a lot. I'm sure this meant that along with underlying, untreated anxiety I was also regularly dealing with withdrawal symptoms before rebounding by taking more. This was not my intention and it took my wife and I many years to figure out that using Valium in this way for so long was not good. I hasten to add that I only got to this point after my treating doctors assured me this was an acceptable way to use Valium.
As a result, when I decided to get off these things I had to first get to a point of having a regular dose that I could taper from. By November last year I settled on around 7.5mg per day (3 half 5mg tablets).
The tapering schedule was agreed to with my treating psychiatrist and I mapped it all out on a spreadsheet with reductions of about 0.5mg every fortnight. I only up-dosed on 2 days (by a total of 2.5mg) and this was early on.
Incidentally, it was my GP who suggested I had to get off Valium but gave me absolutely no advice of how to do so. So much so that I first tried in August 2020 by going cold turkey. 12 days into that adventure I had massive brain zaps etc and subsequently whacked another "crisis" dose into my system when I had one of the worst panic attacks I'd ever had. Anyway, this caused my wife and I to read up on how to get off safely – the first time I came across Prof Ashton's work. And that is now, history. Except the ferocity of the post-withdrawal stuff is not what I was expecting 🙂
Cheers

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What symptoms are you experiencing due to post withdrawal?

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@sears

What symptoms are you experiencing due to post withdrawal?

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Hi Sears.
A lot of pain in my arms, hands and fingers along with pins and needles. My doctor opined that it may be carpal tunnel syndrome and has organised a nerve conduction study but I'm not sure that's right as in the last few days I've started to get similar, but not as severe, symptoms in my feet and toes.
Also, really nasty cramps in my legs especially in my calf that tighten every 20-30 secs for an hour or so.
And painful eyes – like they are really swollen. I've had them checked out and they're fine.
From what I've read these are often associated with benzodiazepine withdrawal but then what isn't?
Cheers,

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