should we call it withdrawal?

I notice a lot of us say we have benzo WD or post acute WD months or years out. It doesn't make any sense to me anymore and it seems to just confuse outsiders who don't understand. What is happening is something beyond the effects of not having a drug in your system anymore. It feels like an injury. Why can't we just say that we have benzo injury instead or WD when people ask, especially in the medical community? Nobody is going to believe us if we tell them we have WD because it makes no sense many months or years out. There was someone on Reddit recently (who claimed to be a neuropharmacologist) who was arguing that PAWS doesn't even exist. I can't seem to remember or find his explanation as to why now. I'll try to message him and find out what he was exactly saying and add it later. He didn't deny the symptoms of PAWS do not exist but really just didn't like the definitions I think.

Once off benzos I choose to call it recovery, because iMO that is what it is.

 

I got the 'side eye' from a doctor once when I used the term withdrawal, but my other doctors including my present one gave validity to the fact that withdrawal is real and recovery can take time.

Mamoot,

 

I don't like the word "withdrawal" either.  I prefer "neurological damage," but that tends to scare people.  It doesn't scare me, but that is because I believe the damage can be healed. 

 

I was sick 3 1/2 years off benzos and 1+ years off all alcohol.  I reinstated.  I got a honeymoon of a few months, and then continued to get sicker.  I should have tapered again right away, but it was marginally helpful for anxiety and sleep while I fought for disability.  I am tapering now, but there is no dose of Valium that will make me feel well, so how can I be in "withdrawal?"  I just never healed from the "neurological damage."

 

Still working on that.  Difficult problem. 

 

Ramcon1

Mamoot,

 

I don't like the word "withdrawal" either.  I prefer "neurological damage," but that tends to scare people.  It doesn't scare me, but that is because I believe the damage can be healed. 

 

I was sick 3 1/2 years off benzos and 1+ years off all alcohol.  I reinstated.  I got a honeymoon of a few months, and then continued to get sicker.  I should have tapered again right away, but it was marginally helpful for anxiety and sleep while I fought for disability.  I am tapering now, but there is no dose of Valium that will make me feel well, so how can I be in "withdrawal?"  I just never healed from the "neurological damage."

 

Still working on that.  Difficult problem. 

 

Ramcon1

 

There are currently dosages of benzodiazepine that you can take, that would work well, as in promote sleep by inducing hypnotic and sedating effects, but it is not possible to feel "normal" on benzos anymore. You would definitely have to quit for a few years and heal mostly before benzos would be able to work normally. But there is never a normal on benzos the way I understand it. This may not be true with very low dosages though.

 

I do believe the damage is reversible. There isn't structural damage that we can notice either or it isn't apparent in brain imaging except in severe cases, comparable to damage from alcohol. We have seen enough people heal completely and overcome this injury; and we have also seen people fully recover and move on with their lives to know it is possible to heal, so that is what we should focus on.

 

The worst thing we can do is tell ourselves that we cannot heal and lose hope. I'm not saying that thinking you won't heal will prevent healing either but it will not help from my experience.

Post Withdrawal Syndrome.

 

It is not a ‘brain injury’ as neurology would describe that.

 

The would call it a Functional Disorder.

 

The problem with that is they tend to mean it is psychological or psychogenic, somatisation, conversion disorder - hysteria...

 

It has been a debate I have followed for decades because it effects the way pp, with ME/CFS has been mistreated as well.

 

If there is no tests that can show damage or disease then collections of symptoms are called ‘syndromes’. The problem is that some powerful shrinks esp. in U.K. have hijacked physical illnesses and tried to grab them for psychiatry, bastardised the biopsychoscocial model (Gormley’s rid of the hip bit) and made a fortune trying to apply psych treatments esp. CBT to such illnesses.

Psychs assume of nothing shows on tests then it is Medically Unexplained Symptoms (MUS or MUPS) and of fair game - the make a leap from ‘unexplained’ to ‘psychogenic’.

 

https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

 

https://www.virology.ws/2020/06/27/trial-by-error-my-letter-to-author-of-codes-commentary/

 

 

I have been campaigning about this stuff for decades.

 

The only way to change it is the fight the fraudulent research and develop tests for disorders.

 

In the US a lot of headway is being made on testing for ME - it has taken decades of hard work by very ill ppl to make that happen.

 

 

The same apples to WD. If they can see it then they will believe it is ‘real’ and any nomenclature would automatically follow from findings.

 

However, unless there is a change in neurology’s perception of what is damage/structural when more granular methods of investigation become widely accepted and understood then it will still be classed as ‘functional’ and the psychs will still try to claim it as their own.

 

 

 

 

 

 

 

I have come off benzos three times and never got what are called withdrawal symptoms days or weeks after.

 

Benzos have helped me get through some very difficult times and I do not see them as an evil enemy but a kind of Fairweather friend who helps you for a while then dumps you.

 

I've been addicted to Xanax, raising the amount to unacceptable levels. I was saved by a smart young psych doctor who recommended a rapid valium switch which took  10 days. I was fine after that except for not being able to sleep for about a month.

 

Everyone is different and we react to meds differently. Some folk can take benzos for years and still get a therapeutic effect. Others like me find them pooping out after 3 weeks and having to jack up the amount.

 

Do benzos cause lasting brain impairment even when off them? I'm not convinced. I've read papers that say yes and papers that say may. Which do you want to believe.

 

My take on the whole gig is that what we call withdrawal symptoms are often just anxiety symptoms. We scare ourselves that we no longer have our benzo buddies protecting us and all it takes is an adverse event in our lives to send us on a wobbler.

 

I have been off K over a month thanks to the expert advice I received from members and bosses here. I am very grateful because advice I got from doctors how to do it was wrong and I knew it.

 

Now that I am completely off benzos, they work again and I am not ashamed to say that on a bad day I take one to help me through. It is preferable to suffering just for the sake of it. However,vI am very careful not to take a single 0.5 mg of K more than once or twice a week at the absolute maximum. I don't expect others here to follow that pattern I'm just saying it works for me and I know I will never get hooked again.

 

Just my three centîmes

You are very lucky then. I tried to reinstate but now get horrific reactions to dosing.

I don’t have anxiety symptoms I have all my muscles crushing my body, all pf my senses including touch gibe completely wrong, hallucinations, psychotic terror, an inability to stop eating but all food feeling repulsive in my mouth, severe DP/DR etc etc.

 

 

I agree with OP . I also now call it ether my injury or I was benzodiazapine injured  or I was injured by benzodiazapines and I cannot take or do xyz . That is what it is ad the drs are always so quick to tell you , that you are not in W/D .

 

Dondi , be careful ,  I also came off two times NOT KNOWING what it was doing  . The first time the Dr asked how it went ,, now I know why . The second he said I was having a nervous break down lol yeah ..  That stuff will bite you when it decides too , I hope you decide to stop taking it

You are very lucky then. I tried to reinstate but now get horrific reactions to dosing.

I don’t have anxiety symptoms I have all my muscles crushing my body, all pf my senses including touch gibe completely wrong, hallucinations, psychotic terror, an inability to stop eating but all food feeling repulsive in my mouth, severe DP/DR etc etc.

 

Ajusta

I have the prob w food, its like my brain doesn't control hunger anymore?

My sense of taste is gone. I gulp it all down but don't really enjoy food anymore.

 

I've been eating a lot of fruit lately, it sort of tastes good.

I'm sorry you're having so many probs

I have come off benzos three times and never got what are called withdrawal symptoms days or weeks after.

 

Benzos have helped me get through some very difficult times and I do not see them as an evil enemy but a kind of Fairweather friend who helps you for a while then dumps you.

 

I've been addicted to Xanax, raising the amount to unacceptable levels. I was saved by a smart young psych doctor who recommended a rapid valium switch which took  10 days. I was fine after that except for not being able to sleep for about a month.

 

Everyone is different and we react to meds differently. Some folk can take benzos for years and still get a therapeutic effect. Others like me find them pooping out after 3 weeks and having to jack up the amount.

 

Do benzos cause lasting brain impairment even when off them? I'm not convinced. I've read papers that say yes and papers that say may. Which do you want to believe.

 

My take on the whole gig is that what we call withdrawal symptoms are often just anxiety symptoms. We scare ourselves that we no longer have our benzo buddies protecting us and all it takes is an adverse event in our lives to send us on a wobbler.

 

I have been off K over a month thanks to the expert advice I received from members and bosses here. I am very grateful because advice I got from doctors how to do it was wrong and I knew it.

 

Now that I am completely off benzos, they work again and I am not ashamed to say that on a bad day I take one to help me through. It is preferable to suffering just for the sake of it. However,vI am very careful not to take a single 0.5 mg of K more than once or twice a week at the absolute maximum. I don't expect others here to follow that pattern I'm just saying it works for me and I know I will never get hooked again.

 

Just my three centîmes

 

I came off 5/6 times no problem but this time absolutely raped me.  You might get lucky but remember what you read here.  Don'tmess up a good thing.

I def don't like the term WD and only recently really understood how much terminology matters (so if you see previous posts with me using the term WD forgive me). Wd indicated addiction and addiction has to have compulsion - of which benzos do not. There is not a craving or compulsion for benzos. I have used stretch drugs  this is not the same. The BIC actually has a great article on this.

 

I disagree with Dondi that what we feel is just anxiety symptoms. I had anxiety before all this started on occasion and never had the symptoms I have now. the burning deep muscle ache is not anxiety - it is nerve damage. Tinnitus is not anxiety. My delay in cognitive processing is not anxiety. I could go on.

This is more than anxiety. And, I dislike how people who don't have the symptoms can easily dismiss them. Be grateful you're not experiencing the pain, but don't judge others. I didn't get on benzos for anxiety, so saying that I am sad because my "buddy" is gone is false. I went to therapy to heal from past traumas and was put on an antidepressant and benzo, both I insisted I didn't need. As Trina said, nerve pain, headaches, migraines, feelings of the flu, severe fatigue, brain fog, and not being able to control your body movements are not anxiety. Come on..

Icy 

I agree. Sonja on our board is really into this. She talks about it here:

 

It's hard to find the line between relatable at all to the outside and accuracy. It seems like no matter what nobody out there gets it anyway.