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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@elsa1000

After eleven and one half years on 3mg of xanax per day I started having break threw anxiety. Taking more was an unsustainable choice so I decided to slowly and gently discontinue the xanax. My GP added 50mg amitriptyline at bedtime and I was able to comfortable reduce my intake by half (to .5mg, three times a day) over the course of two years. I ran into trouble when I reduced to .5mg twice a day. It was horrendous and I only stayed at that dose for about 2 weeks. I ran into even bigger trouble when I went back up to my previous stable dose of 1.5mg a day and things stayed horrible. After researching the discontinuation of benzodiazepines online (and scaring the heck outta myself!) I found the Ashton Manuel's titration protocol. I discussed it with my doctor and we switched me to valium, 10mg three times a day. I was supposed to take a month to transition from one med to the other, valium slowly taking the place of xanax. But I ended up switching in a little over a week. It was such a relief! I think the longer half life of valium had a lot to do with ending the apparently continuous withdrawal I was in. After stabilize at 30mg tid for about three weeks I began lowering the dose by 2.5 grams every two weeks. After I reached 10mg per day, I slowed the reduction to 1mg every two weeks. I'm currently at 4mg per day. I started the titration June 20th and I'll be done in mid February. My doctor respects my decision, but also clearly thinks I'm taking a ridiculously long time. She also said that withdrawing from benzodiazepines is brutal and much worse than any opiate. And yet, despite our supposedly being on the same page regarding titration (Ashton Manuel!) she initially wrote for me discontinuing 30mg of valium in 1 month. As in, 5mg reductions every week! I think I would have been hospitalized. I have no idea what the rush was but after discussing the situation we continued on the schedule I described above. And here is my experience – benzo withdrawal does not have to be brutal. Mine hasn't been. In fact, it hasn't even been difficult. I'm convinced that is because I'm going at a very slow and measured pace, allowing my body/mind to adjust to each reduction. Traumatizing someone who already deals with debilitating anxiety with a rapid and agonizing withdrawal is downright cruel and certainly unnecessary. I wish everyone on this thread success, peace and serenity in 2019!

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Your explanation has been so very helpful! Thanks for taking the time to explain details!
My dr doesn’t like the idea of switching to Valium but I will share your experience with him.
Three months ago I was taking 3-4mg of Xanax per day. With slow titration, I’m at 2.5 per day (.5mg 5 times). He wants me down to .5 4 times a day (2mg per day). I get so nervous and shaky without that 5th .5 that I’m back on it.
He has me on Seroquel at night to help sleep and for anxiety and depression.
I wonder when the right time is to switch to Valium.
It appears this has been almost a 3 year process for you.
With that, I have such a long way to go!
Thanks for your input!
Nancy

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@rascal1

Your explanation has been so very helpful! Thanks for taking the time to explain details!
My dr doesn’t like the idea of switching to Valium but I will share your experience with him.
Three months ago I was taking 3-4mg of Xanax per day. With slow titration, I’m at 2.5 per day (.5mg 5 times). He wants me down to .5 4 times a day (2mg per day). I get so nervous and shaky without that 5th .5 that I’m back on it.
He has me on Seroquel at night to help sleep and for anxiety and depression.
I wonder when the right time is to switch to Valium.
It appears this has been almost a 3 year process for you.
With that, I have such a long way to go!
Thanks for your input!
Nancy

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Yes, it's been a long process. It's worth mentioning that the initial reduction of the Xanax (from 1mg tid to .5 tid) was done on my own. As in, I didn't tell my doctor I was planning on trying to discontinue the medication. Or even reduce it. This was a very conscious decision on my part because I didn't want anyone putting any pressure on me. My prescription was always written as "3mg tid, as needed". So I quietly and slowly set out to need less. My biggest fear (for years and years) was of a high speed, forced titration. I finally had to enlist my doctor's help when it came to switching to Valium. She was not comfortable with the idea at all! She went to medical school not too long after decades of over-prescription of Valium by the medical community. So it had (and has) a terrible reputation. The fact is it is no more or less addictive than any of the other benzodiazepines. You'll get physically dependent on any of them if you take them daily. Had I asked my doctor to treat my anxiety with Valium instead of Xanax, I'm sure she would have said "no way". Instead, I asked her to use Valium as a titration tool. And that she was amenable to. The beauty of using Valium is that there is no between-dose withdrawal symptoms because of the long half-life.

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I get inter-dose withdrawal from Diazepam (Valium).

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Hi jossm – Your original post said you were on Valium 5mg, twice a day for 20 years. Do you mind if I ask you how quickly you titrated off of it the first time? If I understand correctly, you are back on Valium. What is your discontinuation schedule this time? I am so sorry you are struggling. It sounds overwhelming.

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Hi,

I went far too fast the first time because I didn’t know. After cutting dose by a quarter in January 2017 I then tried to CT 7.5mg in August. Reinstated and then tapered over 2 months.

Had to reinstate after 4 months but didn’t stabilise. Tapered from 4mg to 1.5 mg per day since May this year.

Can’t get any lower. Having seizure-like activity. Bedridden in pain, whole body spasm and many horrendous symptoms.

Can’t work out how to get any lower. Holding atm in the hope something will change.

Frankly I feel this will end my life.

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@jossm

Hi,

I went far too fast the first time because I didn’t know. After cutting dose by a quarter in January 2017 I then tried to CT 7.5mg in August. Reinstated and then tapered over 2 months.

Had to reinstate after 4 months but didn’t stabilise. Tapered from 4mg to 1.5 mg per day since May this year.

Can’t get any lower. Having seizure-like activity. Bedridden in pain, whole body spasm and many horrendous symptoms.

Can’t work out how to get any lower. Holding atm in the hope something will change.

Frankly I feel this will end my life.

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So sorry it's so bad, that sound terrible. Which med did u start on. I went off only .50 klonopin taken in evening for 14 years in a month and that was last March still having issues. I have vision issues, tinnitus, major brain fog and memory problems. I cant find anyone who knows anything to even help. My dr's are no help. I am slightly tempted to go back on or try a pill again just to see if it helps. But very afraid I will feel worse. Dont give up, sure we will get out of this.

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@jossm

Hi,

I went far too fast the first time because I didn’t know. After cutting dose by a quarter in January 2017 I then tried to CT 7.5mg in August. Reinstated and then tapered over 2 months.

Had to reinstate after 4 months but didn’t stabilise. Tapered from 4mg to 1.5 mg per day since May this year.

Can’t get any lower. Having seizure-like activity. Bedridden in pain, whole body spasm and many horrendous symptoms.

Can’t work out how to get any lower. Holding atm in the hope something will change.

Frankly I feel this will end my life.

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Jossm – what was the last dosage you were stabile on? If 10mgs of Valium would relieve your symptoms would you consider that an option? I realize you've spent close to 2 years reducing your intake so losing ground, so to speak, might sound like a terrible idea. But where you are at right now sounds awful too. I'm so sorry. But there is always hope. Healing is what the body does naturally. Doctors can facilitate that healing, or royally screw it up. But it's your body doing the healing. Are you on any other medications?

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@jossm

Hi,

I went far too fast the first time because I didn’t know. After cutting dose by a quarter in January 2017 I then tried to CT 7.5mg in August. Reinstated and then tapered over 2 months.

Had to reinstate after 4 months but didn’t stabilise. Tapered from 4mg to 1.5 mg per day since May this year.

Can’t get any lower. Having seizure-like activity. Bedridden in pain, whole body spasm and many horrendous symptoms.

Can’t work out how to get any lower. Holding atm in the hope something will change.

Frankly I feel this will end my life.

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Hi, @jossm – it sounds like you are having some fairly significant side effects with your taper off of diazepam (Valium). Is your neurologist walking through this process with you? I believe you mentioned you had an appointment with your neurologist sometime soon?

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@elsa1000

Yes, it's been a long process. It's worth mentioning that the initial reduction of the Xanax (from 1mg tid to .5 tid) was done on my own. As in, I didn't tell my doctor I was planning on trying to discontinue the medication. Or even reduce it. This was a very conscious decision on my part because I didn't want anyone putting any pressure on me. My prescription was always written as "3mg tid, as needed". So I quietly and slowly set out to need less. My biggest fear (for years and years) was of a high speed, forced titration. I finally had to enlist my doctor's help when it came to switching to Valium. She was not comfortable with the idea at all! She went to medical school not too long after decades of over-prescription of Valium by the medical community. So it had (and has) a terrible reputation. The fact is it is no more or less addictive than any of the other benzodiazepines. You'll get physically dependent on any of them if you take them daily. Had I asked my doctor to treat my anxiety with Valium instead of Xanax, I'm sure she would have said "no way". Instead, I asked her to use Valium as a titration tool. And that she was amenable to. The beauty of using Valium is that there is no between-dose withdrawal symptoms because of the long half-life.

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I read that Valium can cause Dementia with long-term use. Just be careful.

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@catcatanzaro60

I read that Valium can cause Dementia with long-term use. Just be careful.

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@catcatanzaro60 – I found this article about it: https://www.health.harvard.edu/mind-and-mood/two-types-of-drugs-you-may-want-to-avoid-for-the-sake-of-your-brain

Be careful of the studies and research because even this one had no control group so there is no "proof"

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