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!

@johnhans

I am sorry you are not doing well with your doctor. Having a doctor who you feel comfortable with is important. Yes it does take a while for your body to adjust after discontinuing a benzodiazepene. They can have a long half life and so some can stay in your system. Then your body goes through an adjustment to deal with no longer having the medication. There can be a psychological association with this as well as physical. You now have to deal with relying on yourself rather than medication. This stress can cause forgetfulness. I found that getting rid of my benzodiazepene actually increased my attention. I am retired now so did not care if I had a stressful situation. I just said I can deal with this at home.
You may not have that situation so maybe therapy would help. Talking can help reduce stress. Hopefully your talking about this here is helping some.
Also some antidepressants can cause memory loss. So it may be the antidepressant. Depression can also cause memory loss so maybe can get an increase from your doctor. These are all things to discuss with a doctor and hopefully you can talk to your doctor about why you feel he is not as helpful as you wish. Maybe you two could work on improving your communication. If not I hope you can see the other doctor. And something I do not have, patience to wait, may help as it may just take longer for you to get over the withdrawal and longer for the antidepressant to kick in. Please let us know how you are doing as we do care about you.

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Not uncomfortable with my psychiatrist he just doesnt seem to understand this. With me expressing memory issues he just wants to give me more ADD meds.
Memory and ringing in my ears got worse when I started the trintillex antidepressant but depression is improving. My memory issues severity changes all the time. Every day I go from it's never going to get better it must be alzheimers to maybe its starting to improve. I am in a constant up and down battle with myself.

Liked by Leonard

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@jossm

There is nothing to take for Benzo WD.

You could take something for the tight muscles that doesn’t work on GABA.

Some people find magnesium helpful but that is GABAergic.

If you are in a country that prescribed it some people find Flexeril helpful, some find Tizanidine helpful.

It depends why your muscles are tight.

If it is tightness rather than true spasm the above probably eon’t Help.

The best thing is cold (ice packs wrapped to prevent burning) alternated with moist heat.

Also trying to gradually increase very gentle exercises (look up stuff you can do in bed if necessay such as those for people with ME CFS).

If at all possible see a good physio who does rehab with people who are very debilitated or recovering from strokes or works with people with other neurological conditions or brain injuries. You ought to be able to get someone to come to your home for that.

It won’t be easy and it will be painful but it is the only way I think.

I see a physio and massage therapist but as I taper down again the sensory, perceptual and muscle stuff gets worse and worse as does the terror of everything in my own house.

I don’t think you will make any progress without physio/rehab help.

Also, what is your diet like. Many people find either the Keto or wholefood plant based diet helps a lot.

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Actually, flumazenil will help. It has to be an IV but look it up and explain it to your doctor. I’m starting my 2nd round of 4 days next week. It’s the only medically proven “drug” that CAN help.

Liked by aarniek, Leonard

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@cj51

Actually, flumazenil will help. It has to be an IV but look it up and explain it to your doctor. I’m starting my 2nd round of 4 days next week. It’s the only medically proven “drug” that CAN help.

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@cj51
Isn’t this drug mainly used as an antidote for Benzo overdoses and the like? I’ve never heard of it used to help withdrawal symptoms and thought it was only used in a hospital setting. Has it been used on you? Its half life only lasts a few minutes, would be too short for that I’d think.
Jake

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@beckysn

I am really scared in the last 3 days my memory went from a kind of bad to almost non-functionable. I am about 2 week on a new antidepressant triutillax and havent been sleeping well the last 3 or 4 nights. I have had something similar to this happen to me about 4 years ago I got so bad I couldent barely work. I went through all kinda of tests and they didnt find anything. My ears also hurt a little with this, and said maybe a small amount of fluid in one but not an infection. They gave me antibiotics just because I was desperate to try anything to help. A few days later it went away as fast as it happened. That was 3 years before I weaned off the benzo's. I also worry that being on different anxiety meds and all the different meds I tried
For bipolar and depression the last 26 years have damaged me. No drs i have been to have no idea on what these meds can do to you even a neurologist. I have been working 2 part time jobs through all this. But so hard some days. 😓

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Have you considered trying the anti-biotic again to see if it had the same reaction it had three years ago? What was the anti-biotic?

I say this because benzos are immune-suppresants. There may be some immune connection

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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!

Liked by Parus

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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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