Author Topic: We shouldnt call this withdrawal  (Read 1062 times)

[Buddie]

Re: We shouldnt call this withdrawal
« Reply #10 on: December 16, 2021, 05:09:04 am »
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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[Buddie]

Re: We shouldnt call this withdrawal
« Reply #11 on: December 16, 2021, 07:05:43 am »
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.
« Last Edit: December 16, 2021, 07:11:22 am by [Buddie] »
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[Buddie]

Re: We shouldnt call this withdrawal
« Reply #12 on: December 16, 2021, 07:38:51 am »
I’ve heard it referred to as discontinuation syndrome. That seems fitting too.
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[Buddie]

Re: We shouldnt call this withdrawal
« Reply #13 on: December 16, 2021, 03:26:24 pm »
I agree with [...].  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. 
« Last Edit: December 16, 2021, 10:41:32 pm by [Buddie] »
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[Buddie]

Re: We shouldnt call this withdrawal
« Reply #14 on: December 16, 2021, 04:44:35 pm »
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. 
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: We shouldnt call this withdrawal
« Reply #15 on: December 16, 2021, 05:11:59 pm »
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.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: We shouldnt call this withdrawal
« Reply #16 on: December 16, 2021, 05:24:58 pm »
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.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: We shouldnt call this withdrawal
« Reply #17 on: December 16, 2021, 06:14:38 pm »
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 [...].
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: We shouldnt call this withdrawal
« Reply #18 on: December 17, 2021, 12:42:44 am »
Those are all good explanations about why some of us are so sick all the time.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Re: We shouldnt call this withdrawal
« Reply #19 on: December 18, 2021, 04:07:36 am »
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
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.