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We shouldnt call this withdrawal


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One of the hugest mistakes our entire 'community' makes is call this withdrawal.

I see it everywhere in articles and written pieces on this, and I feel it shortchanges all of this.

 

This is not withdrawal. Maybe it was the first few weeks post, and we all go through some level of 'withdrawal' for some time tapering and immediately thereafter, maybe a long time, im not diminishing that. but once someones this far out, no more. not 6 months later, not a year later, not 4 years later. 'Withdrawal' instantly has the drs saying oh its just lingering anxiety, etc etc. The drug is long out of my system. this is damage.

 

Im approaching 5 years from my last tiny dose of this medication, im completely 100% sober and off all drugs for years, and yet im in hell with myriad symptoms, im nearly crippled right now. this is NOT withdrawal. withdrawal is long over. this is a brain injury, and/or nervous system damage; im not a dr nor a scientist, I dont know exactly how to quantify it.

 

The term withdrawal instantly diminishes the severity of whats really going, and puts it in a category that makes the average person believe it to be something they understand, and far less severe. anytime ive ever said withdrawal, I immediately destroyed my chances at someone gaining understanding of what im going through. and drs ALWAYS say, oh, you cant still be in withdrawal, and the chance for understanding is over. we've all heard it.

 

I wish all I went through was enduring a period of withdrawal.

 

this is far worse.

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I am learning this through interactions with doctors lately.  If I say withdrawal or mention that i’ve been off for over a year, I am quickly dismissed AND they just put general anxiety disorder on my chart when they cant find anything else to explain my symptoms. 

 

If I tell them I developed tolerance and physical dependence a year ago and my body, somehow, is not adjusting back to baseline and then describe the symptoms that allows them to label it to their comfort.  It also plays to their need to be the one to diagnose.  They dont seem to like it when we come up with any sort of diagnosis.

 

I would love to hear other suggestions on how to best describe this!

 

I also found this on benzoinfo.com

 

Dr. Stuart Shipko, psychiatrist, author and SSRI-withdrawal expert in Pasadena, California, speculates below in the following quote as to some reasons why this may be. (Note: While this quote is specific to SSRIs, it can also be applied to protracted benzodiazepine withdrawal syndrome, as the withdrawal from both was found in studies to be remarkably similar):

 

Protracted withdrawal needs a better name.  The term ‘protracted withdrawal’ does describe the time sequence of symptoms after stopping serotonin based antidepressants, but is a poor choice of language when discussing this with your doctor.  Medicine does not recognize such a thing as protracted withdrawal.  Withdrawal is considered something that goes away within days or weeks of stopping a drug. 

 

If you are going to talk to your doctor about these sorts of problems, then it is best to describe the problem as symptoms that happened after stopping the drugs [emphasis added]. I realize that many physicians will declare these new symptoms the start of a new mental illness – usually bipolar – but calling it protracted withdrawal just confuses the doctor.

 

Although I refer to protracted withdrawal as drug neurotoxicity[emphasis added], it is still a bad idea to give the doctor a diagnosis rather than to present symptoms. It’s just the way that doctors work. They want to make the diagnosis and often feel put off by patients who present with a complaint and a diagnosis.

 

On the other hand, doctors are increasingly influenced by information from the Internet which is told to them by patients. They generally do not want to see a lot of printed off pages, as there is no time to really read them during the office visit.

 

Even with a good attitude and linguistic strategy, going back to the prescribing doctor is often futile.  When confronted with a patient who has any sort of emotional problem – even if it is a side effect of drugs – the doctors tend to pull out a prescription pad and want to try one drug after the next in hope of being helpful.

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No problem Guardian Angel but I agree with Aragorn, I wish I could have come up with a better way of describing it when I was going through it.  If I would have been able to inform my family and friends that I was injured or damaged I think they could have accepted or at least tolerated my long struggle for recovery.
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I am seeing my new GP next week and will have to come up with a strategy for how to introduce the doctor to my issues and concerns about antibiotics, steriods, etc.  I am really hoping for the best but I’ve already been labeled in the system as a psychiatric case.  All the doctors in my health system can see all the other doctors notes. 

 

Each time I go to the doctor they always note that I am a psych case and with that comes a lot of stigma.  Last month when I went to the ER they treated me horribly.  Three security guards were around me at all times.  The ER doctor literally said, ‘you can never be too careful.  We saw that you have a long history with our psych department but we cant see details.  So those guards out there are to protect us until we know who you are.’  Before the docs came in all the guards were talking about how I was about to be a 72 hour hold.  They talked about me as if I am a non-human!

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I am seeing my new GP next week and will have to come up with a strategy for how to introduce the doctor to my issues and concerns about antibiotics, steriods, etc.  I am really hoping for the best but I’ve already been labeled in the system as a psychiatric case.  All the doctors in my health system can see all the other doctors notes. 

 

Each time I go to the doctor they always note that I am a psych case and with that comes a lot of stigma.  Last month when I went to the ER they treated me horribly.  Three security guards were around me at all times.  The ER doctor literally said, ‘you can never be too careful.  We saw that you have a long history with our psych department but we cant see details.  So those guards out there are to protect us until we know who you are.’  Before the docs came in all the guards were talking about how I was about to be a 72 hour hold.  They talked about me as if I am a non-human!

 

This enrages me but also breaks my heart JBen, I'm so sorry you were treated like that when you were in so much pain.  :therethere:

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The term withdrawal instantly diminishes the severity of whats really going, and puts it in a category that makes the average person believe it to be something they understand, and far less severe. anytime ive ever said withdrawal, I immediately destroyed my chances at someone gaining understanding of what im going through. and drs ALWAYS say, oh, you cant still be in withdrawal, and the chance for understanding is over. we've all heard it.

 

I wish all I went through was enduring a period of withdrawal.

 

this is far worse.

 

  I have to agree with this,

 

it diminishes the severity of what we are dealing with,  this should be spreaded/recognized as a benzo damage/injury,

  When they will recognize that ? That the drugs they prescribe  inflicts a real chemical imbalance by disrupting funcions of the brain, not being a theoric pharmaceutical strategy to prescribe them in the first place, but A REAL induced one, i see this denial from "doctors"who work with those drugs as a self protection, but i dont get why other medical fields do protect this field , They should be loyal to their vote of saving lives , by suporting this field they are letting "doctors" impair and inflict damage ,

 

  benzos  /psych meds affects the individual in several ways , you cant treat a infection properly due to a cns damage , anything after them impacts severly your cns,, if after benzos even a supplement may cause you a severe reaction, how your going to treat yourself properly adressing any sort of clinical problem? ,  your health in general is affected,

 

Neurology is not a pseudoscience ,  this field should be going against , protecting people from this drugs , since it damages the organ they spent years studying trying to understand and improove, this field that study/works to heal neurodegenerative diseases , AD, PD, ME,  how /why they wouldnt recognize such a thing?  Why they are still denying the impact of a drug who inflict damage , if they should be preventing such a thing of happening? Its beyond understandment

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One of the hugest mistakes our entire 'community' makes is call this withdrawal.

I see it everywhere in articles and written pieces on this, and I feel it shortchanges all of this.

 

This is not withdrawal. Maybe it was the first few weeks post, and we all go through some level of 'withdrawal' for some time tapering and immediately thereafter, maybe a long time, im not diminishing that. but once someones this far out, no more. not 6 months later, not a year later, not 4 years later. 'Withdrawal' instantly has the drs saying oh its just lingering anxiety, etc etc. The drug is long out of my system. this is damage.

 

Im approaching 5 years from my last tiny dose of this medication, im completely 100% sober and off all drugs for years, and yet im in hell with myriad symptoms, im nearly crippled right now. this is NOT withdrawal. withdrawal is long over. this is a brain injury, and/or nervous system damage; im not a dr nor a scientist, I dont know exactly how to quantify it.

 

The term withdrawal instantly diminishes the severity of whats really going, and puts it in a category that makes the average person believe it to be something they understand, and far less severe. anytime ive ever said withdrawal, I immediately destroyed my chances at someone gaining understanding of what im going through. and drs ALWAYS say, oh, you cant still be in withdrawal, and the chance for understanding is over. we've all heard it.

 

I wish all I went through was enduring a period of withdrawal.

 

this is far worse.

 

You know, the whole premise of this post is just wrong. We have a great big board on this forum called Post-withdrawal Recovery Support. After we withdraw from benzos, i.e., after we finish our taper, we begin RECOVERY from the damage caused by the benzos. It's RECOVERY, not withdrawal, and it's been called that for years around here.

 

Again, after you finish your taper, you're no longer in withdrawal. You're in RECOVERY.

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I have sometimes called it "Post Benzo Syndrome" or "Post Withdrawal Syndrome". I tend to lean towards the former.

 

You're right. At 5 years this is certainly no longer withdrawal. What we are dealing with are pathological changes in the way the CNS operates. The details of those changes we're not sure of. It could range from actual "brain damage" where structural damage to various receptors or tissue has occurred to long lasting perturbations in interconnected receptor systems that remain stuck in a abnormal state. Unfortunately we don't really know what's been done to us. But, it definitely isn't simple withdrawal symptoms.

 

So, I vote for "Post Benzo Syndrome" or "Post Withdrawal Syndrome".  I suppose the latter emphasizes that this is something that lingers long after traditional withdrawal has completed.

 

 

 

 

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CNS damage I call it now.  I tell people who I interact with and see how messed up I am now that I have brain damage.  It's easier for them to deal with me then.  I know I have severe nerve and brain damage.
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One of the hugest mistakes our entire 'community' makes is call this withdrawal.

I see it everywhere in articles and written pieces on this, and I feel it shortchanges all of this.

 

This is not withdrawal. Maybe it was the first few weeks post, and we all go through some level of 'withdrawal' for some time tapering and immediately thereafter, maybe a long time, im not diminishing that. but once someones this far out, no more. not 6 months later, not a year later, not 4 years later. 'Withdrawal' instantly has the drs saying oh its just lingering anxiety, etc etc. The drug is long out of my system. this is damage.

 

Im approaching 5 years from my last tiny dose of this medication, im completely 100% sober and off all drugs for years, and yet im in hell with myriad symptoms, im nearly crippled right now. this is NOT withdrawal. withdrawal is long over. this is a brain injury, and/or nervous system damage; im not a dr nor a scientist, I dont know exactly how to quantify it.

 

The term withdrawal instantly diminishes the severity of whats really going, and puts it in a category that makes the average person believe it to be something they understand, and far less severe. anytime ive ever said withdrawal, I immediately destroyed my chances at someone gaining understanding of what im going through. and drs ALWAYS say, oh, you cant still be in withdrawal, and the chance for understanding is over. we've all heard it.

 

I wish all I went through was enduring a period of withdrawal.

 

this is far worse.

 

Agreed 100%. This is nervous system damage caused by neurotoxicity not a withdrawal symptoms. People make mistakes calling it this. Central nervous system neurotoxicity is difficult to treat.

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I agree with Redevan.  The confusion exists even on this board.  I started a similar thread a while back about the terminology we use.  I have been thinking a lot about this post.  Should we our pain a euphemism like "discontinuation syndrome,"like they use for antidepressants now?  Hell no!  I do not think that re-labelling what we experience after withdrawal is going to have any effect on doctors at all.  They claim ignorance and will continue to do so.  Psychiatrists only practice medication management now.  Would they willingly agree to recognize something that would put them out of business?  And what about the kick backs they get for using these drugs?  The free samples they push - here, try this, try that.  Let's try two, maybe we need to add a third.  I do not see a change happening until a lawsuit is brought against pharmaceutical companies, like the lawsuit against tobacco companies.  With discovery, evidence will turn up showing they have known the damage these drugs do.  Has anyone ever been prescribed a benzo with a word of caution about dependency from their doctor?  My psychiatrist actually told me that we needed to treat my anxiety now and worry about addiction later.  This was after Valium had already thrown me into tolerance and I was miserable.  My last therapist, who is in his 70s,  told me that when he was in medical school (what - a century ago?!) he was told that these medications were not dangerous etc. etc.  That was then, but this is now.  He can no longer plead ignorance.  We need to pound the media, the pharmaceutical companies, and the medical profession with news about what these drugs can do.  Almost all the news about addiction is about opiods.  Have you ever heard a story on the news about suicide related to benzo "recovery"?  And you know what is so pitiful, every single person my age (in their seventies) that I know is on antidepressants and/or benzos, with ever increasing doses.  In my case, benzos were lethal, I had to get off. 
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In my mind, it's a brain injury, plain and simple.  Certain antibiotics are known to cause brain injury, and it is treated as brain injury.  Why isn't PAWS considered a brain injury every bit as bad as a TBI?  If it were, we would have access to the type of neurological help that might speed recovery (see Norman Doidges books).  But as it is, unless we are diagnosed with TBI or MS or something like that, we don't have access to those types of therapies. 
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Many people call the whole long strange trip "withdrawal" because they believe their symptoms are caused by the absence of the benzos, and are thus "withdrawal symptoms". I can understand that logic, but I think there's a problem with it: these symptoms can actually start while we're still taking the benzos, at the same prescribed dose. This is usually called "tolerance withdrawal". But what does that mean? It means "withdrawal symptoms" without actually withdrawing. You would think that the way tolerance would work is that the benzos would stop having any effect as your body adapted to them, and you would just feel normal, as if you hadn't taken the drug. But is your "normal" unmedicated state characterized by insomnia, anxiety, depression, tingling, formication, skin problems, bloating, and so forth - even if you never experienced any of these before benzos, even if you were put on benzos for something like myoclonus or epilepsy? Maybe it's time to ask whether those symptoms are actually "withdrawal symptoms" at all. I've seen many people ask about this over the years. Why wouldn't we just stabilize at a certain dose and feel as if we weren't taking the benzos at all? Why would we have to keep increasing the dose in order to avoid "withdrawal" symptoms? It doesn't really add up.

 

The various suggestions I've read here for alternative terminology all make sense and are valid, especially when dealing with doctors who dismiss the idea of long-term "withdrawal symptoms". The reason I prefer terms like "recovery" or "healing" is simply that they are more optimistic. If we call it "brain damage" or "Post Benzo Syndrome" or "Post Withdrawal Syndrome", there's no indication whether this condition will ever improve. They all sound rather permanent - which of course is possible, at least to some extent. But it's also possible to heal, to recover, maybe even completely. We just can't say ahead of time how much we'll recover. Every case is different. So why not hope for the best, and use terminology that reflects that hope? I've been "recovering" for more than ten years now, and I've recovered quite a lot, but still not 100%. So I say I'm still recovering. Maybe I'll still be recovering ten years from now. I don't know. But even if that's the case, it's better than not recovering, isn't it? It's like what's said at the end of that movie, Life of Pi. If you haven't seen it, you should. It's pretty good. Now I won't tell you about what's said at the end, because that would be a spoiler. But if you've seen the movie, you know what I'm talking about.

 

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Many people call the whole long strange trip "withdrawal" because they believe their symptoms are caused by the absence of the benzos, and are thus "withdrawal symptoms". I can understand that logic, but I think there's a problem with it: these symptoms can actually start while we're still taking the benzos, at the same prescribed dose. This is usually called "tolerance withdrawal". But what does that mean? It means "withdrawal symptoms" without actually withdrawing. You would think that the way tolerance would work is that the benzos would stop having any effect as your body adapted to them, and you would just feel normal, as if you hadn't taken the drug. But is your "normal" unmedicated state characterized by insomnia, anxiety, depression, tingling, formication, skin problems, bloating, and so forth - even if you never experienced any of these before benzos, even if you were put on benzos for something like myoclonus or epilepsy? Maybe it's time to ask whether those symptoms are actually "withdrawal symptoms" at all. I've seen many people ask about this over the years. Why wouldn't we just stabilize at a certain dose and feel as if we weren't taking the benzos at all? Why would we have to keep increasing the dose in order to avoid "withdrawal" symptoms? It doesn't really add up.

 

The various suggestions I've read here for alternative terminology all make sense and are valid, especially when dealing with doctors who dismiss the idea of long-term "withdrawal symptoms". The reason I prefer terms like "recovery" or "healing" is simply that they are more optimistic. If we call it "brain damage" or "Post Benzo Syndrome" or "Post Withdrawal Syndrome", there's no indication whether this condition will ever improve. They all sound rather permanent - which of course is possible, at least to some extent. But it's also possible to heal, to recover, maybe even completely. We just can't say ahead of time how much we'll recover. Every case is different. So why not hope for the best, and use terminology that reflects that hope? I've been "recovering" for more than ten years now, and I've recovered quite a lot, but still not 100%. So I say I'm still recovering. Maybe I'll still be recovering ten years from now. I don't know. But even if that's the case, it's better than not recovering, isn't it? It's like what's said at the end of that movie, Life of Pi. If you haven't seen it, you should. It's pretty good. Now I won't tell you about what's said at the end, because that would be a spoiler. But if you've seen the movie, you know what I'm talking about.

 

I completely agree that taking a positive view is very important to recovery, and that calling it recovery rather than something more ominous sounding is probably best when we think about it for ourselves or when amongst other BBs.  But I really think that if it were viewed in the medical community as nothing less than a brain injury, we would have more access to help.  There are many kinds of brain injury - traumatic and chemical.  It is possible to recover from all sorts of brain injury.  But just because someone recovered does not mean that they did not, in fact, have a brain injury.  I guess my point is that we need the medical profession to recognize the seriousness of the damage psych meds can do.

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Many people call the whole long strange trip "withdrawal" because they believe their symptoms are caused by the absence of the benzos, and are thus "withdrawal symptoms". I can understand that logic, but I think there's a problem with it: these symptoms can actually start while we're still taking the benzos, at the same prescribed dose. This is usually called "tolerance withdrawal". But what does that mean? It means "withdrawal symptoms" without actually withdrawing. You would think that the way tolerance would work is that the benzos would stop having any effect as your body adapted to them, and you would just feel normal, as if you hadn't taken the drug. But is your "normal" unmedicated state characterized by insomnia, anxiety, depression, tingling, formication, skin problems, bloating, and so forth - even if you never experienced any of these before benzos, even if you were put on benzos for something like myoclonus or epilepsy? Maybe it's time to ask whether those symptoms are actually "withdrawal symptoms" at all. I've seen many people ask about this over the years. Why wouldn't we just stabilize at a certain dose and feel as if we weren't taking the benzos at all? Why would we have to keep increasing the dose in order to avoid "withdrawal" symptoms? It doesn't really add up.

 

The various suggestions I've read here for alternative terminology all make sense and are valid, especially when dealing with doctors who dismiss the idea of long-term "withdrawal symptoms". The reason I prefer terms like "recovery" or "healing" is simply that they are more optimistic. If we call it "brain damage" or "Post Benzo Syndrome" or "Post Withdrawal Syndrome", there's no indication whether this condition will ever improve. They all sound rather permanent - which of course is possible, at least to some extent. But it's also possible to heal, to recover, maybe even completely. We just can't say ahead of time how much we'll recover. Every case is different. So why not hope for the best, and use terminology that reflects that hope? I've been "recovering" for more than ten years now, and I've recovered quite a lot, but still not 100%. So I say I'm still recovering. Maybe I'll still be recovering ten years from now. I don't know. But even if that's the case, it's better than not recovering, isn't it? It's like what's said at the end of that movie, Life of Pi. If you haven't seen it, you should. It's pretty good. Now I won't tell you about what's said at the end, because that would be a spoiler. But if you've seen the movie, you know what I'm talking about.

 

Well said Evan.

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Not sure what to call this any longer….

But after 9 years …I do believe I have brain damage and long term “ side  effects” from my benzo use…

I’m still recovering….but at 61 years of age ….not sure how my brain will react anymore .

Suffered through the covid virus last year …still not the same since that .

 

But whatever long term damage may have been done …I still believe I’m healing very slowly now …

It’s just very sad that any of us still continue to suffer with so many issues from benzo use…

If I only knew then how this would turn out …….

 

Much love and healing to all

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I agree too 100%.  Nervous system damage caused by neurotoxicity.  Yes.  For the most part I call my ongoing symptoms: 'neurological dysfunction from medication harm/toxicity'. 

 

The reason I no longer call it 'withdrawal' is because it simply isn't that - if it ever was.  It's damage.  And imo it's a physiological injury that's compounded by a lack of understanding and acknowledgement from mainstream medical.  The experience of it, in and of itself can be secondarily traumatic.

Sarah

One of the hugest mistakes our entire 'community' makes is call this withdrawal.

I see it everywhere in articles and written pieces on this, and I feel it shortchanges all of this.

 

This is not withdrawal. Maybe it was the first few weeks post, and we all go through some level of 'withdrawal' for some time tapering and immediately thereafter, maybe a long time, im not diminishing that. but once someones this far out, no more. not 6 months later, not a year later, not 4 years later. 'Withdrawal' instantly has the drs saying oh its just lingering anxiety, etc etc. The drug is long out of my system. this is damage.

 

Im approaching 5 years from my last tiny dose of this medication, im completely 100% sober and off all drugs for years, and yet im in hell with myriad symptoms, im nearly crippled right now. this is NOT withdrawal. withdrawal is long over. this is a brain injury, and/or nervous system damage; im not a dr nor a scientist, I dont know exactly how to quantify it.

 

The term withdrawal instantly diminishes the severity of whats really going, and puts it in a category that makes the average person believe it to be something they understand, and far less severe. anytime ive ever said withdrawal, I immediately destroyed my chances at someone gaining understanding of what im going through. and drs ALWAYS say, oh, you cant still be in withdrawal, and the chance for understanding is over. we've all heard it.

 

I wish all I went through was enduring a period of withdrawal.

 

this is far worse.

 

Agreed 100%. This is nervous system damage caused by neurotoxicity not a withdrawal symptoms. People make mistakes calling it this. Central nervous system neurotoxicity is difficult to treat.

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