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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@clutch

I am weaning off klonopin too. Was at 2.0 and down to .75 mg. But have not seen any improvements in symptoms. I still feel as terrible as I did in the beginning. Used for many, many years, mainly for sleep. What symptoms did others have that triggered your decision to wean off?
I had severe fatigue, weight loss, blurred vision, BP spikes and later nausea, especially after meals. Still having all these, even after reduction in dosage.
How about others out there?

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Hi, @clutch - how is the taper off of clonazepam (Klonopin) going? Are you still feeling terrible?

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@lisalucier

Hi, @clutch - how is the taper off of clonazepam (Klonopin) going? Are you still feeling terrible?

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Thanks for the reply, @lisalucier. Short version, no improvement. Do you know of any patients who have visited Mayo for similar symptoms/problems? Outcomes?
Thank you.

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@clutch

I am weaning off klonopin too. Was at 2.0 and down to .75 mg. But have not seen any improvements in symptoms. I still feel as terrible as I did in the beginning. Used for many, many years, mainly for sleep. What symptoms did others have that triggered your decision to wean off?
I had severe fatigue, weight loss, blurred vision, BP spikes and later nausea, especially after meals. Still having all these, even after reduction in dosage.
How about others out there?

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@clutch
Although I never had any side effects other than maybe some drowsiness which is common with all Seizure meds. I discontinued it very slowly and never had any withdrawal symptoms at all. Are your symptoms better now that your on a lower dose? What was your taper rate? You mention taking it “for many, many years.” How many years. It will make a difference on how long it will take to get off it. You will find time and consistency are your best allies. Speed and large cuts will be your cruelest enemy’s. You are in a unique place since it doesn’t sound like this medication was really that helpful. Surly you didn’t tolerate the effects you mentioned for a little sleep. Perhaps I m not understanding what your ultimate goal is. You state “I still feel as terrible as I did in the beginning.” Do you mean as in when you first started the medication or since you started tapering?
I’d like to help if I can but I’m a bit confused.
Jake

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@jakedduck1
Thanks so much for the reply. Sorry to be confusing....I need all the help I can get. I took clonazepam, Ambien, and Trazadone (one or the other) for insmnia for 25 years. I didn't have severe side effects during most of those years. These came on in the last 3 years....it took a while to narrow down what was causing it and after lots of medical investigation, nothing showed up, so it was a process of elimination. I started to really taper down about July 2018. I was at about 1.5 mg. I have rushed it some, I know, but I'm now at .625 and holding. Tried Ativan and Valium substituting, but didn't show improvements, and less sleep.

The thing is most of my symptoms showed up before I even started to taper, only to get worse with time. I know many will call this "tolerance withdrawal". But now even at a steady dose, I do not improve nor stabilize any at all. I think most people do show some, at least. I feel I'm getting worse day by day.

So....does this shed any light on the problem? I hope so, because I would like your feedback or from anyone else on this forum. It would be greatly appreciated. Many thanks.

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@aarniek

Anyone found anything that helped this brutal condition so you could have any sort of life again? I am on 8 different Benzo withdrawal sites including benzo buddies and found zero help!

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I've had to learn to live with uncomfortableness. Christian mindfulness meditation saved my life.(U-tube) Exercise every day helps. I walk or ride stationary bicycle. The goal is to grow new brain cells to replace the injured Exercise, learning how to hobby- I am learning how to line dance on u-tube. Mindful meditation grows new cells. It helps my pain. It stops anxiety attacks. Hang in there. Yiu will heal. You will have good days and bad. Soon there will be more good than bed

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I'm struggling with the financhial problems of not being able to work. I may have to declare bankruptsey or deplete my retirement account. Is there any financhial support for our type of brain I jury.

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@aarniek

Hydro codone is an opioid isn't it? Is there another one you know of that is not an opioid ?

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No. It could be that it helped by way of placebo effect as he now says that it does little for his pain, might take the edge off, he says. He has tried morphine and that just made him move in slow motion, like he needed to take a nap but that did nothing for his pain. It is like going in circles, there seems to be no answers.

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@rauter

Let me say something of Ashton Protocols. It's not to be considered as the last authentic word, or Bible of addicionology. Professor Heather Ashton prepared it on the context of UK in a certain period..This not to disregard the above said manual as many patients should have helped by it. Still I say, there is "To give and take from it."

Ashton is insanely stubborn on tapering off any Benzo using Valium. Should we need to consider Valium is something Godsend? Does Valium effectively treat all benzo dependence? No is the answer. Valium (Diazepam) works for some, but it would be bumper foolish to use it as the gold standard Benzo to treat dependence.

Valium has its own problems and they are not trivial to neglect. In certain patient population Valium can induce or aggravate aggressive behaviour to a considerable level. Valium is more of a depressant than a mood elater for some. This will inflict suicidal behavior in many. Often this is seen in patients consuming high doses, but hey..Ashton recommends Valium in high doses during the switch.. ie..for someone dependent on Xanax 8 or 9mg.. the Valium substitution can go as high as 100mg of Valium. This is not the recommended dose of Valium but Ashton can't help it.

Besides Valium is a highly reinforcing drug in it's class. Its subtle sedative effect with euphoriant high can attract drug abusers to use it again and again that is causative of another drug problem on its own.

Then why it is a benzo du jor in Ashton manual?

Reason : It was the only Benzo with an almost unbelievable half-life when professor Ashton entered the field. She found the certain Benzo's availability in the tiniest dose too that would make it convenient to use in from very high to relatively smaller dose forms. Ashton is addictionologist so, it is normal for her to look upon everything through the prism of addiction and treat likewise. But in the real world we have seen people immensely being helped by Benzos for their ailments and withdrawing the helping chemical will be devastating in their case because stopping and reinstating Benzos or Antidepressants can prove almost lethal for them for the reason the withdrawn drug may not necessarily effective in second attempt. Patients are forced to double their dosage to suffer more and unnecessary adverse effects.

I could have gone and on but long posts seldom attracts readers so, let me pause here now. One thing I learnt from my experience is there isn't any Protocols to follow in the case of Benzodiazepine addiction or habituation. First of all it is to educate people on their problems to the point of them having new insights on their own. This will help the needy to listen to their bodies. Working on this will help to target the goals to achieve.

And finally : Benzodiazepines are great drugs in the right hands. Many in the real world is being tremendously helped by them. The horror stories are mostly the aftermath of the medication being in the wrong hands. Users should recollect their state of mind prior to the medication, this is often impossible as the patient only look upon a drug after the drug being effective to the extent of them forgetting what led them taking it.

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I think that I would look upon them as a questionable sometimes necessary evil. Recent studies claim that 85% of people over 70 on a Benzo will develop a form of dementia. Not worth the risk in my thinking.

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@elsa1000

Thank you, Parus. I'm not quite there yet but close. My doctor hadn't heard about the Ashton manual either. In fact, she knew nothing at all about discontinuing benzos. I've concluded that she DID know about physical dependance. Which is why she told me "these drugs are impossible to discontinue." And also, "stay off the internet!" If I had stayed off the internet I would never have learned about the importance of a VERY gradual titration. I've never considered myself a particularly naive person. But I was regarding the Healthcare Industry. It's based on a profit model not a wellness model. I am done with it.

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I worked as a registered nurse for 40 years and always had the highest regard for the medical professional. Now, after years of misery caused by Xanax(( my husband took one and sometimes two 0.25 my each day for 22 years) was always in some type ofwithdrawal because of the strange symptoms which caused numerous visits to specialists, most of which were anywhere 5 to 12 hours away by car. Now, after having weaned himself off of Xanax, incorrectly apparently, he has been in prolonged withdrawal for 25 months and getting worse, not better. I am amazed at the stubbornness, the refusal to listen, or show any interest in prolonged Benzo Withdrawal Syndrome, always being told by medical" professionals", neurologists included, that there is no such thing. They say that they do not know what it is, but refuse to admit that it was caused by a drug, basically iatrogenic disorder. They kept trying different drugs and each one made him worse, but wikepedia explains what prolonged Benzo Withdrawal is and what to avoid. I have come to the conclusion that the AMA is a criminal organization that works with Big Pharma to control what is taught in medical schools so all doctors are nothing more than drug dealers! Stepping back, I realize that all of my relatives who went to doctors for help were meerly given pills which did nothing or made them worse. My best advice, be you own doctor and follow the natural treatments.

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@ck1958

I've had to learn to live with uncomfortableness. Christian mindfulness meditation saved my life.(U-tube) Exercise every day helps. I walk or ride stationary bicycle. The goal is to grow new brain cells to replace the injured Exercise, learning how to hobby- I am learning how to line dance on u-tube. Mindful meditation grows new cells. It helps my pain. It stops anxiety attacks. Hang in there. Yiu will heal. You will have good days and bad. Soon there will be more good than bed

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I hope that you are right.

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