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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@ess77

@rpcollier, @lindasmith1222, and all….You mentioned RLS. I have a serious case and was put on an Iron + C replacement supplement by my Sleep doctor. Apparently, this is a rather newish finding that we often have low iron. Thie simply required a specific ferrous blood test, then I was to either have an infusion or begin the supplement. I was extremely low and began the supplement, Vitron C. You need the addition of C to help with the absorption of the iron. I regularly have this bloodwork and am very slowly improving. I am also taking a magnesium supplement and Requip prescription. Man! What improvements. I still move around too much, but this has been a life-changer for me.

Perhaps give it a look and see if any of this makes sense for you.
Blessings, elizabeth

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I did not have low iron. I was aware of that issue by listening to a podcast from Cleveland Clinic/Dr.Andy Berkowski. So glad you are getting better. I highly recommend listening to Dr. Berkowski. Details the triggers, home remedies and treatment.

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@rpcollier

I did not have low iron. I was aware of that issue by listening to a podcast from Cleveland Clinic/Dr.Andy Berkowski. So glad you are getting better. I highly recommend listening to Dr. Berkowski. Details the triggers, home remedies and treatment.

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@tpcollier, and all. Thank you for the referral to Dr. Berkowski. I enjoyed much of his discussions. I sent an email via portal to my Mayo sleep doctor re the issues I'm now experiencing. It's time to retest my ferrous blood level and I'll be interested to know if I've improved. It appears the iron infusions are a big improvement in treatment. Also, he and others mentioned the use of small doses of opioids, hydrocodone, for some of the best results for severe RLS,

I'll let you know if there's a change, as in the Requip losing the ability to help. We'll see.
Blessings, elizabeth

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@ess77

@laurine7, @jakedduck1, and all…This is such an important issue and so often not directed well by physicians/medical staff.

My son, 53, was on Klonopin for a few years. He went to a new psychiatrist, zoom appt ONLY, and this doc increased the Klonopin, increased Seroquel, and then at one visit stopped refills on Klonopin. She may have decided he was a 'druggie' or something. I have no idea. He is NOT, but she may not have read his medical history! He is suffering from extreme pain 24/7, has PTSD from 20 years of agony and all that goes with it. She was completely negligent, should have her license revoked and she almost killed him.

He ended up a month+ later, on the kitchen floor having seizures, unconscious. After I found him, I called rescue and he was in the Mayo Hospital Florida for a week. On 5 IVs at one time, going full bore to save him, flush his system and calm his heart. He almost died. He almost died!!!!! Please read this and understand with what you are dealing.

Under NO circumstances should you, based on my experiences with my son, stop any of these types of meds nor taper them unsupervised. And extremely gradually. He had uncontrolled heart issues, which is not in his history, was extremely paranoid, had nightmares, and had inner voices telling him to do things….he is not schizophrenic. This was drug-induced.

He had to return to the hospital a couple of times, with the same symptoms, just not unconscious. It has taken a year of tapering with his new psychiatrist to get him almost back to where he was before stopping the Klonopin. He is gradually increasing Cymbalta and it is helping. No side effects. She increased the Seroquel at night for sleep assistance, as the pain wakes him every 4 hours otherwise. It's helping w/o apparent side effects. The last line of her text to me w/medication changes, I handle his drugs for him, at his request, as it can be hard for him to keep on top of the drugs and increases his anxiety level. The last line was: 'Little by little.

That's the important secret of this frightening medication. Little by little, extremely slowly taper off, with supervision and someone near to help if you get into difficulty. I almost lost my dear son due to the stopping of this drug by a medical person who should know better. I knew better and I have no medical degree. Little by little and don't give up. He is much improved in many ways, but adding the Cymbalta and other meds have helped.

Blessings as you figure this out. Your brain is in shock right now and must be treated properly to be well.
elizabeth

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@ess77
Hey there Lizzy,
Hope your improving by the day.
May I inquire why your son is taking Seroquel? Is it only for sleeping? If so, has has he tried other sleep preparations specifically designed for that purpose? Does he still hear the voices. Does he have RLS?

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@ess77

@laurine7, @jakedduck1, and all…This is such an important issue and so often not directed well by physicians/medical staff.

My son, 53, was on Klonopin for a few years. He went to a new psychiatrist, zoom appt ONLY, and this doc increased the Klonopin, increased Seroquel, and then at one visit stopped refills on Klonopin. She may have decided he was a 'druggie' or something. I have no idea. He is NOT, but she may not have read his medical history! He is suffering from extreme pain 24/7, has PTSD from 20 years of agony and all that goes with it. She was completely negligent, should have her license revoked and she almost killed him.

He ended up a month+ later, on the kitchen floor having seizures, unconscious. After I found him, I called rescue and he was in the Mayo Hospital Florida for a week. On 5 IVs at one time, going full bore to save him, flush his system and calm his heart. He almost died. He almost died!!!!! Please read this and understand with what you are dealing.

Under NO circumstances should you, based on my experiences with my son, stop any of these types of meds nor taper them unsupervised. And extremely gradually. He had uncontrolled heart issues, which is not in his history, was extremely paranoid, had nightmares, and had inner voices telling him to do things….he is not schizophrenic. This was drug-induced.

He had to return to the hospital a couple of times, with the same symptoms, just not unconscious. It has taken a year of tapering with his new psychiatrist to get him almost back to where he was before stopping the Klonopin. He is gradually increasing Cymbalta and it is helping. No side effects. She increased the Seroquel at night for sleep assistance, as the pain wakes him every 4 hours otherwise. It's helping w/o apparent side effects. The last line of her text to me w/medication changes, I handle his drugs for him, at his request, as it can be hard for him to keep on top of the drugs and increases his anxiety level. The last line was: 'Little by little.

That's the important secret of this frightening medication. Little by little, extremely slowly taper off, with supervision and someone near to help if you get into difficulty. I almost lost my dear son due to the stopping of this drug by a medical person who should know better. I knew better and I have no medical degree. Little by little and don't give up. He is much improved in many ways, but adding the Cymbalta and other meds have helped.

Blessings as you figure this out. Your brain is in shock right now and must be treated properly to be well.
elizabeth

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I am so sorry about your son. Unfortunately, I feel that to get off of Benzodiazepines you MUST have a Dr. Experienced with tapering. I went Cold Turkey after taking Lorazepam for over 10 years (very angry with the Dr. who prescribed them for so long) I was in terrible shape when I called my Primary Care Dr at 4:30 AM and got a prescription. I was then on 4 different medications to get through the withdrawal. I have been on Clonazepam for 8-1/2 months with a psychiatrist on ZOOM. She has made no plan for tapering and I just tapered myself. I am obsessed with researching about all the drugs I have been on to get off the one Benzodiazepine. I cannot stress enough to read, read, and read before making any decisions on the future of your son. You are your own best advocate. I know I will get better after looking back at where I was. That Dr. should be culpable for malpractice. Thank God I found Connect Mayo Clinic, it's been a WEALTH OF INFORMATION AND ADVICE.

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Once you are completely weaned off of Ativan, can you ever take it again as needed? I used to take It once a month or so & now I’m on it daily for the last 10 weeks and dreading the taper!

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@sunshinedaisy

Once you are completely weaned off of Ativan, can you ever take it again as needed? I used to take It once a month or so & now I’m on it daily for the last 10 weeks and dreading the taper!

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I would say we are in the same class as the alcoholics. Once sober those that are committed cannot touch alcohol. One benzo leads to another, and then another. I would say definitely no. Alcohol and Benzos both attach to the gaba receptors in our brain.

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Four years ago, I was on ativan for about 4-6 weeks straight. I had terrible withdrawal. Some aspects of it still linger at a low level (mainly random muscle fasciculations, mostly in the legs). My advice would be to NEVER go on benzos.

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@aarniek

Had muscle tightness,but compared to now ,It went from a little to insane ,life threatening muscle tightness! I never had any depression issues and I made a huge error when I had 30 pills ,one script ,I changed to a closer neurologist and me gave me refills in ever increasing strengths ,the last one in 2011- was from 4-mg to 8 mg and I started blacking out ! Fell down my stairs twice and now have no left arm or shoulder functional ,but when I was sitting on a bench at a park next door with my dogs and blacked out ,falling to the concrete below and cracking the bone above my eye I knew I had to stop the lorazapam! My doctor has been in the news for malpractice and had to give up his license in Colorado,so he was apparently telling patients they had something they didn’t and seeing them monthly ,like me and the physicians assistant would give them ,and me refills,charging for a full visit. So I should never have been on it after 30 days! ( in his defense I do not know that for a fact ,maybe I did need it ) He took me off by switching me to Valium and did a 3 week taper!

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Did tapering to Valium work? How did you do it?
I’m in .25 Ativan three times/day for 7 weeks and need to get off.
They did not tell me anything about benzo’s 🥺

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@animalcolor

Four years ago, I was on ativan for about 4-6 weeks straight. I had terrible withdrawal. Some aspects of it still linger at a low level (mainly random muscle fasciculations, mostly in the legs). My advice would be to NEVER go on benzos.

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I’m on .25 Ativan three times/day for 7 weeks….
How can I get off?????

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@laurine7

I am so sorry about your son. Unfortunately, I feel that to get off of Benzodiazepines you MUST have a Dr. Experienced with tapering. I went Cold Turkey after taking Lorazepam for over 10 years (very angry with the Dr. who prescribed them for so long) I was in terrible shape when I called my Primary Care Dr at 4:30 AM and got a prescription. I was then on 4 different medications to get through the withdrawal. I have been on Clonazepam for 8-1/2 months with a psychiatrist on ZOOM. She has made no plan for tapering and I just tapered myself. I am obsessed with researching about all the drugs I have been on to get off the one Benzodiazepine. I cannot stress enough to read, read, and read before making any decisions on the future of your son. You are your own best advocate. I know I will get better after looking back at where I was. That Dr. should be culpable for malpractice. Thank God I found Connect Mayo Clinic, it's been a WEALTH OF INFORMATION AND ADVICE.

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Do you sleep okay? I can’t sleep or get drowsy or anything. It’s super scary.

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