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!

@rascal1

Have you tried a local hospital detox center?

Jump to this post

To @aarniek, do not try a detox center for help. They do not know anything about Benzos. I am sorry that at 81 you are still going through PAWS. My husband is 73 and going through PAWS almost two years now. We think he did it incorrectly because asking your family doctor to guide you in Benzo withdrawal is like asking a beautician because neither one knows anything about it. Look up the prolonged Benzo withdrawal syndrome on wikepedia, there are quite a few good points and not so much reading. The Ashton Journal by profeser Ashton of Great Britain has information but I am afraid that it basically comes down to time. I have been scourering the Internet for 5 years trying to figure out my husband's problems and only in the last year come across PAWS. A case of too late smart so I do not think any of the information can help us. Big Pharma knew what Benzos did in 1970 but just wanted to make money so hid it. A special place in hell for those people.

Liked by aarniek, Leonard, falon

REPLY
@ejezbeta

To @aarniek, do not try a detox center for help. They do not know anything about Benzos. I am sorry that at 81 you are still going through PAWS. My husband is 73 and going through PAWS almost two years now. We think he did it incorrectly because asking your family doctor to guide you in Benzo withdrawal is like asking a beautician because neither one knows anything about it. Look up the prolonged Benzo withdrawal syndrome on wikepedia, there are quite a few good points and not so much reading. The Ashton Journal by profeser Ashton of Great Britain has information but I am afraid that it basically comes down to time. I have been scourering the Internet for 5 years trying to figure out my husband's problems and only in the last year come across PAWS. A case of too late smart so I do not think any of the information can help us. Big Pharma knew what Benzos did in 1970 but just wanted to make money so hid it. A special place in hell for those people.

Jump to this post

My doctor is a neurologist and should not be allowed to prescribe a benzo as he gave me every medicine in the book in my first year of PAWS ,to help me and not only diid none of them help,i am sure thats why i have never improved,,only got worse in the last 6+ years !

Liked by Leonard

REPLY
@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!

Jump to this post

The only thing is to not put anything in your body that stimulate the GABA receptors. No caffiene alcohol sugar sucralose aspartame gabonza beans monounsodium glutamate. This may not be a complete list. MSG is in anything that is processed. Anything boxed or canned. Fresh or frozen. Check out keto and paleo diet. I promise this helps.

Liked by Leonard

REPLY

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?

Liked by Leonard, falon

REPLY
@sallycanuck

Hi @aarniek,
I am so sorry to hear of your troubles with Ativan and other benzo’s. I can share my story to provide some hope…please don’t be discouraged by anything I share. I don’t know why my withdrawal was relatively easy but here goes…I was on Ativan (2-3 mg daily)and clonazepam (2 mg daily) for over a decade. It was prescribed mainly to help reduce anxiety, although my primary condition was depression. I mainly took it at night (Ativan and Clonaz together) to put me to sleep and keep me asleep. Over the 10 yrs I was also on SSRIs. In the past 4 yrs, they added Seroquel to my drug mix to stop suicidal ideation.On top of all that, I was on hydromorphone and oxy’s for a chronic pain condition.
In the past 9 months, I decided it was time to try coming off of as many meds as possible-I was just so tired of feeling groggy and fuzzy and having little ability to concentrate and experiencing memory impairment. I met once with an addictions psychiatrist who designed a withdrawal schedule for me. I was too afraid to read anything on sites like benzobuddies because people had told me so many bad stories about how it might be impossible for me to come off the meds without terrible side effects. So, I guess ignorance was bliss for me-I really tried to go into the process without reading anything on it.
I decided to get as physically healthy as I could while starting to taper so I started Weight Watchers which really helped me stop eating junk food and highly processed food-I think this made a huge difference for me as I’d never really cleaned up my diet. I lost 35 lbs in the first 20 weeks and was getting lots of exercise- walking 45 minutes/day and swimming 2-3 times per week. In retrospect I think the change in diet and the exercise really helped with lessening any anxiety symptoms as I weaned off the drugs.
We started with weaning me off Seroquel and then we attacked the opiates. I weaned off the extended release opiates first and used the oxy for any breakthrough pain. Then I tapered off the oxy dosage and do not use it at all now. Amazingly it turns out that my pain is tolerable without drug intervention-I was just too stoned all those years to realize the pain wasn’t so bad anymore.
Then we attacked the benzos…starting with the ativan. I tapered off over a period of approx 6 weeks, and boosted the clonazepam while withdrawing from the ativan. In the past 8 weeks I have been tapering off the Clonaz (which was bumped up to 3 mg nightly) and am now down to .75mg nightly. I just saw my psychiatrist and we’ve decided to stay at the .75 level until I get through our rainy winter season here-SAD is an issue for me.
But there’s so much good news in all this. My energy level is good, I wake up alert most days after 8 hrs sleep, I have not had any suicidal thoughts for 2 months, no panic attacks, not clinically depressed, no longer wear plus-sized clothes :)…I’m still a bit overwhelmed by financial stresses but can at least start to problem-solve with some clarity (which had been impossible for the past decade-I would just cry when any of life’s little bumps in the road occurred).
I don’t know what kind of medical support you have available but I have to say that seeing an addictions psychiatrist to develop my plan was an important first step. I also suspect that changing my diet (for real) and getting more exercise played a huge part in my process.
I am mad at my previous psychiatrist (who is now retired) for never red-flagging the long-term impact of the drugs he was prescribing me, but I am so grateful to be off the Seroquel, Ativan and on the way to being off the clonazepam as well.
I still take SSRI’s for the depression but am so happy to be relatively drug-free. I never would have thought I could have reached this place, so please don’t give up. You will be in my prayers and thoughts.

Jump to this post

Good for you!

Liked by Leonard

REPLY
@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?

Jump to this post

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

Liked by Leonard

REPLY
@lisalucier

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

Jump to this post

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.

Liked by Leonard

REPLY
@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?

Jump to this post

@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

REPLY

@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.

Liked by Leonard

REPLY
@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!

Jump to this post

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

Liked by Leonard

REPLY

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.

Liked by Leonard

REPLY
@aarniek

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

Jump to this post

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.

Liked by Leonard

REPLY
@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.

Jump to this post

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.

Liked by Leonard

REPLY
@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.

Jump to this post

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.

Liked by lauren123, Leonard

REPLY
@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

Jump to this post

I hope that you are right.

Liked by Leonard

REPLY
Please login or register to post a reply.