Rant : What about not scaring everybody with our own singular experience ?

Let me put it this way : there are 85 millions prescriptions a year in USA for benzo. There are 21 000 members of benzobuddies from all over the world (that’s a tiny percentage of the users). Most of them do not post anymore. There is never more than 500 of us on average everyday. Most of the one posting need reassurance and soothing support. I would find it appropriate that anyone posting here with a bad experience would be kind and aware enough not to make their experience a universal reference. I just read another one of those post today stating that we should say the « truth about it » (about protracted symptoms, about the thesis that healing would not be healing but something more problematic etc.). Come on, guys. No one knows the « truth ». And a handful of testimonies have never created any truth. Right ? So, if we get back to the purpose of this forum, it would be great to stop scaring everybody with our latest wave, which suddenly became the « truth about it » ! I've been really annoyed with this trend and needed to push a rant. I am sorry for anyone suffering here. I am too. But nobody will get anywhere with this kind of « truth ». Let's be uplifting, hopeful to each other (especially for the sake of those tapering right now). Forget about those fleeting and unrepresentative truth. It's often a great way to improve our own condition.

Enzo

 

Enzo. Couldn't agree with you more. Showed bb site to my psychiatrist and he said there horror stories are in the minority. He is an extremely benzo savy psychiatrist who is more than willing to go with whatever works for me so that I am functionable as I have kids and a busy schedule.  Does this suck? Yes. However I am writing this from Disney World.  It is my daughters sweet sixteen and am here with my husband and a few of her friends. Trip was planned  6 months ago before I ever took a clonazapam  Took 4 mgs a day for three weeks and wanted off. He was not the prescribing Doctor. Took them due to a cancer scare that turned out just fine. Unfortunately before I found him I had googled benzo withdrawal and found this site. Scared the absolute crap out of me.  Because of this I insisted on a slow taper of .125 every two weeks. Which is why my signature is confusing because I included my time tapering with my actual use. If I hadn't been told by so many that I would go through hell if I didn't do a long and arduous taper I probably would have been off them by now. As it stands it has taken me four months to get down to three mgs. At this rate I will be tapering for over a year after 3 weeks of use. Decided to reevaluate what to do when I get home from the trip. Try to stay off here as much as possible. It can be a real mind bend to say the least. Thanks for starting this thread. My psychiatrist will not prescribe benzos. He will only do it to get people off. He has been doing this for over 30 years. He feels they should only be prescribed in an emergency situation for four days max.

 

 

Agree 1000%.  See my post on "positivity".  Reading most of this stuff I'd be convinced it would be better to be dead.  Onward and upward! :thumbsup:

Enzo. Couldn't agree with you more. Showed bb site to my psychiatrist and he said there horror stories are in the minority. He is an extremely benzo savy psychiatrist who is more than willing to go with whatever works for me so that I am functionable as I have kids and a busy schedule.  Does this suck? Yes. However I am writing this from Disney World.  It is my daughters sweet sixteen and am here with my husband and a few of her friends. Trip was planned  6 months ago before I ever took a clonazapam  Took 4 mgs a day for three weeks and wanted off. He was not the prescribing Doctor. Took them due to a cancer scare that turned out just fine. Unfortunately before I found him I had googled benzo withdrawal and found this site. Scared the absolute crap out of me.  Because of this I insisted on a slow taper of .125 every two weeks. Which is why my signature is confusing because I included my time tapering with my actual use. If I hadn't been told by so many that I would go through hell if I didn't do a long and arduous taper I probably would have been off them by now. As it stands it has taken me four months to get down to three mgs. At this rate I will be tapering for over a year after 3 weeks of use. Decided to reevaluate what to do when I get home from the trip. Try to stay off here as much as possible. It can be a real mind bend to say the least. Thanks for starting this thread. My psychiatrist will not prescribe benzos. He will only do it to get people off. He has been doing this for over 30 years. He feels they should only be prescribed in an emergency situation for four days max.

Hi Jayne. A minority may scare a majority, but if we remain aware of the way we receive information in a state of stress or anxiety, we'll know what is good for us or not. I mean : when someone tells you that it's going to be hard, long and may extend beyond what your mind can actually perceive (and the forums are filled with that kind of quotes, delivered in a casual way), it is no good for anybody. First of all, we never know what can happen (the power of med is not everything in a life history). Our mind got us in the anxiety ordeal. It can get us out of it regardless of drugs. I'm not saying that benzos did not mess with our system, but we have to draw into our hope, latent strength, and the simple possibility that things may turn out to be good for us. We have to. And we will if we don't get too much caught in some cold "truth" that some want to transmit by contagion. Disney World is about wonder and fairy tale. You may take it as an allegory of what's coming ahead for you. The healing fairies are on the way. Why not ? Does that sound less "true" than anybody else's punctual and private experience ?

Enzo, there is much that you say that I agree with. Focusing on the worst possible outcomes, and even just focusing on how bad we may feel, can be very counterproductive. Two people I worked with to get off of long term benzo use tapered in a month and were wd symptom free by 2 months. Totally different from my experience.

 

However, I find it a sanity saver to read that other's symptoms are similar to mine. Sometimes I feel so crazy and different that if I didn't have the reality check that comes from being able to vent, and read other's vents, I might be totally coo-coo for cocoa puffs. On one hand when I read about someone having a problem I have (like extreme insomnia) for a long time it can be scary but it also tells me I'm not alone. That my experience is just wd so I might as well chill with it. When I read someone has had it for 2 or 3 years I try to frame it that if they can do it, I can do it. Does that make sense? If everyone were cheerful and positive all of the time I'd feel more alone with my darkness. What I like is when people are genuine about how they feel but avoid drawing conclusions that mean that there's little or no hope for them or others in the same position. There are some threads I don't even touch though if it looks like they are on the all-despair channel all the time.

Enzo, there is much that you say that I agree with. Focusing on the worst possible outcomes, and even just focusing on how bad we may feel, can be very counterproductive. Two people I worked with to get off of long term benzo use tapered in a month and were wd symptom free by 2 months. Totally different from my experience.

 

However, I find it a sanity saver to read that other's symptoms are similar to mine. Sometimes I feel so crazy and different that if I didn't have the reality check that comes from being able to vent, and read other's vents, I might be totally coo-coo for cocoa puffs. On one hand when I read about someone having a problem I have (like extreme insomnia) for a long time it can be scary but it also tells me I'm not alone. That my experience is just wd so I might as well chill with it. When I read someone has had it for 2 or 3 years I try to frame it that if they can do it, I can do it. Does that make sense? If everyone were cheerful and positive all of the time I'd feel more alone with my darkness. What I like is when people are genuine about how they feel but avoid drawing conclusions that mean that there's little or no hope for them or others in the same position. There are some threads I don't even touch though if it looks like they are on the all-despair channel all the time.

Of course, and you are right to nuance what I said from what you feel.

I am actually not suggesting that everyone should be positive all the time. I'm more emphasizing the importance I see, when we talk to others (a matter of life or death sometimes, a word can trigger much in a day), to never imply we know how it is going to be for somebody else. "it's going to be a rough journey" even said with a good intention is useless at best. First of all because we don't know how it's going to be for any specific person and also because if Ashton manual and general posts from the moderators may explain the range of possibilities, the forum itself is a support group that does it's work best with encouraging posts. I understand that someone who's been through a long time problem may find some relief in reading that others have been through this too, but many people here are on the way and get scared at the worst moment because of some tactless posts from a few. If we get back to the figures in my first post. If 85 million people come here to read that they have 3 years of hell in front of them because 100  have had this experience, it is a damaging thing I don't feel we should support. Lynn33 in her answer above is just saying that too.

Yes, Enzo, it would be wise for all of us to surrender our malfunctioning crystal balls. We can get so convinced that what we see is reality but it's just one more story. One potential version of what could happen.

 

There's another thread going on right now on Chewing the Fat about considering being more positive. I think perhaps we could do a better job of encouraging those who are struggling to hang out in CTF, Accentuate the positive and success stories.

I can't help but think some of the horror stories are people with problems beyond benzo withdrawal.

 

 

JC215,  I did not want to come out and say this, but I think you have nailed it.

Lynn33,JC215. Yes you nailed it!  Enzo and MTFan. Let's keep this thread going. Enzo what you said about it being a numbers game is exactly what my psychiatrist said. Flying back to NY tomorrow and will be changing my game plan. Then I'll see what happens. Going to trust his opinion. If he's wrong I'll slow down.  I already feel I could cut every week. But nooooo I might die or be condemned to benzo hell for all eternity Not listening to any one but my body from here on in. Hell, I feel better already. Thanks Enzo

Some excellent points here, many I've thought time and time again.

 

Do we need more positivity here? Absolutely.

 

The one thing we need to keep in mind is that the people who land here are definitely the minority in the case of benzo withdrawal syndrome as a whole. So these/we are the 'worse case'. With that being said, I don't think we should discount the experiences of all our members. There are a lot of articulate, intelligent people on this site that I'm happy to have 'met'.

 

This is such an individual experience, which is a huge part of the challenge. However, that doesn't give anyone the right to fear-monger or state unequivocally that their 'truth' will be everyone else's as well. The OP's observations are bang on, IMO.

 

Yep, Lynn and Jayne. Even if you took a random sample of 85 million people you'd get a decent percentage with pre-existing physical and/or mental issues. But for our population it's skewed to have way more than the average of a random sample having those problems because they were almost always a player in the reason we were prescribed benzos. I'm pretty darn sure that the severity of my problems is heavily affected by having had CFS to begin with, among other things.

Hi,

 

These matters have been discussed a number of times at BB. I do not have time to write much now, but I thought it worth pointing out that over 600 members login to BB every day; nearly 1,100 per week; about 1,900 per month; and in the past year, nearly 6,400 have logged in at least once. And has been mentioned, from a total membership of 21,000.

 

But, these number do not represent all those negatively affected by benzodiazepines. I regularly make use of information published at forums, but rarely do I join them.; this is true for most people. I refer you to the 90-9-1 principle:

 

https://en.wikipedia.org/wiki/1%25_rule_%28Internet_culture%29

 

As with just about every other forum on the web, the number of visitors to BB completely outstrips the number of members.

Interesting thread. I guess I fall somewhere in the middle. I took xanax low dose/short term a total of 1 mg/day for around four months. I c/t'd not knowing better and went through  months of hell and now 15 months later I am not healed and still suffering. So I always cation people to at least consider tapering and get knowledgeable advice and help. I try not to scare them but I strongly warn them because my experience was very real. On the other hand, after my initial posts,(when

I didn't know about this at all and thought I was dying), I very rarely post my symptoms. People are going through their own w/d and don't need to worry about mine too. But in the beginning it was very, very reassuring to read other people's symptoms and know I wasn't alone. No easy answers in Benzoworld, eh? Good topic Enzo!

Good info, Colin.  I suspect we are probably the tip of the iceberg globally. 

 

I would think there are huge numbers of people who spend billions of dollars on test after test to try to determine why they feel so sick.  And sadly, the result is probably many false diagnoses and more prescriptions.  Had I not known what could happen with this, I'd be one of them.

Some excellent points here, many I've thought time and time again.

 

Do we need more positivity here? Absolutely.

 

The one thing we need to keep in mind is that the people who land here are definitely the minority in the case of benzo withdrawal syndrome as a whole. So these/we are the 'worse case'. With that being said, I don't think we should discount the experiences of all our members. There are a lot of articulate, intelligent people on this site that I'm happy to have 'met'.

 

This is such an individual experience, which is a huge part of the challenge. However, that doesn't give anyone the right to fear-monger or state unequivocally that their 'truth' will be everyone else's as well. The OP's observations are bang on, IMO.

 

I'll second everything in this, Kiddo. 

I've been going through this "recovery" for more than four years now - and that doesn't include the year and a half of withdrawal that came before. I don't bother discussing my symptoms here any more. It seems pointless. I just hang out with kindred spirits, help out with this or that technical problem, post the odd song or pic, and try not to scare anyone by telling them the bare-nekkid truth about how I'm doing - even on my own blog.

 

And yet, it would never occur to me to tell anyone else to sit down, shut up, and pretend that it's all sunshine lollipops and rainbows. That would be selfish, arrogant, pushy and obnoxious. This is the one place on earth where we can come and talk about our symptoms with people who can understand what we're talking about. Those whose posts are the scariest are usually those who most need our support. They do not need to read anything that suggests even subliminally that we don't want to listen to them any more, or that they must not express their overwhelming fear because doing so might frighten others.

 

We're not here to help others. We're here to help each other. Keep that in mind.

 

Good info, Colin.  I suspect we are probably the tip of the iceberg globally. 

 

I would think there are huge numbers of people who spend billions of dollars on test after test to try to determine why they feel so sick.  And sadly, the result is probably many false diagnoses and more prescriptions.  Had I not known what could happen with this, I'd be one of them.

 

Good point Challis. I was thinking the same thing. We probably are the exception from the standpoint that MOST people experiencing adverse effects from these drugs are either:

 

1) Clueless that the drugs are their problem, thus, seeking knowledge about these drugs is probably not even on their radar screens, or

 

2) They are SO sick that even considering a forum environment would be too much for them to tackle….and that would include people who are too sick to even just be a BB forum observer, or

 

3) Their support system is so good that they are not interested in a support system outside the one that they already have, or

 

4) Some people who are on these drugs may not have access to a computer or the Internet.

BlueRose

Colin Thanks for the info. Challis99 you are spot on. If I hadn't been made aware of the multitude of possible symptoms I would have thought I had a multitude of potentially deadly diseases from GI issues, migraines, etc. 

Blue Rose-- good points, but I highly doubt anybody's not on here because they have too good of a support system.  With even most doctors in the dark about benzo withdrawal, how would anybody's family be able to mount that great of a supportive campaign?

 

My feeling is that there are just a lot of people living and dying on these drugs without ever knowing the negative effects they may be having.  I know of a lot of elderly people who are on benzos AND painkillers AND antidepressants and they are not doing well.  And then they die.  Who knows if they'd have had a longer, better quality of life if they weren't hooked on all these different drugs?  At the same time, knowing what we know about the horrors of trying to get off, who's got the heart to suggest withdrawal to a lady in her eighties?

This forum has scared me but it's also informed me

I was in w/d last year or kindling or something and didn't know it, took more benzos for 4 mos not even daily and when I tried to stop the gates of hell opened

I had no idea

Now I am prepared

Getting prepared for a 500 day taper, meditating and will try to be functional also surrendered that  I might not be functional at the end

At least I am making plans, saving money, working now etc

But I wish I hadn't know or read the horror stories but they so mimic what I felt in my cold turkey and fast taper...

We will see what the end brings

Positivity certainly can help but it doesn't help if its chemical

I have to believe there is hope and I will be normal again

 

enzo, then don't read my posts. When I am in pain, I reach out. I need the support here.

Very glad to have found this thread tonight... Some of the thoughts expressed here have definitely been on my mind. As a person who uses a low dose and has off and on (as needed for panic) for five years-(At times being off them entirely for whole months)  I'm just not sure if I'm fully convinced that i'm in some full blown withdrawal situation. I have felt the weird sensations that Ativan brings like a day after I might have used one for anxiety. Specifically becoming more emotional/teary about things. That is a different symptom than a panic attack or a anxiety attack. But by in large even though my panic gets extreme and intense and crazy - I'm just wondering ...Am I panicking because of withdrawal or am I panicking because I have a panic disorder and I'm obsessing about the fact that I might be withdrawing. (Not to mention a whole host of other intense life stressors that I'm not even talking about on this forum) I feel like it might be easy to confuse (for a low dose user such as myself) the reality of our actual mental illness and the potential reality of a withdrawal. It is definitely food for thought. But regardless I want to be OFF of these pills because I'm sick of them and I don't like being foggy or living in the Ativan haze. But now it puts this weird pressure on me psychologically that this drug shouldn't be an option for me anymore and it is the one thing that has been able to rescue me when my panic got too intense for the last five years. So now I'm feeling that pressure ...Wondering what I'll do to handle it without Ativan when the ground gives way and I'm having rapid cycling panic attacks that I can no longer control. (As I have faced off and on throughout my adult life benzo or no benzo) Sorry to vent a little. Just sharing some thoughts/feelings. Love this forum regardless and feel like I have learned things here. Just confused.

And yet, it would never occur to me to tell anyone else to sit down, shut up, and pretend that it's all sunshine lollipops and rainbows. That would be selfish, arrogant, pushy and obnoxious. This is the one place on earth where we can come and talk about our symptoms with people who can understand what we're talking about. Those whose posts are the scariest are usually those who most need our support. They do not need to read anything that suggests even subliminally that we don't want to listen to them any more, or that they must not express their overwhelming fear because doing so might frighten others.

 

We're not here to help others. We're here to help each other. Keep that in mind.

 

 

While I agree with the idea that we should all try to remain conscious of how we present our situations to people who may be more vulnerable we also need to remember that sometimes that means that some really sick people will be forced to suffer in silence.

 

We went through this a few years ago before the protracted board was created. Back then there seems to have been a culture of hostility breeding toward protracted folks in the benzo community and I am really glad that Colin created the protracted board when he did because I was starting to feel like I wasn't welcome and it doesn't feel good to endure many months of benzo symptoms just to have the only support system you have start to turn against you because the facts aren't pleasant.

 

The other issue I have with "toning it down" is that the only way any of this is going to change is if the public and the medical community begin to understand the damage these drugs can cause. The public needs to understand how devastating this can be for the unlucky folks who find themselves at the tail end of the healing curve.

 

 

I've been going through this "recovery" for more than four years now - and that doesn't include the year and a half of withdrawal that came before. I don't bother discussing my symptoms here any more. It seems pointless. I just hang out with kindred spirits, help out with this or that technical problem, post the odd song or pic, and try not to scare anyone by telling them the bare-nekkid truth about how I'm doing - even on my own blog.

 

And yet, it would never occur to me to tell anyone else to sit down, shut up, and pretend that it's all sunshine lollipops and rainbows. That would be selfish, arrogant, pushy and obnoxious. This is the one place on earth where we can come and talk about our symptoms with people who can understand what we're talking about. Those whose posts are the scariest are usually those who most need our support. They do not need to read anything that suggests even subliminally that we don't want to listen to them any more, or that they must not express their overwhelming fear because doing so might frighten others.

 

We're not here to help others. We're here to help each other. Keep that in mind.

 

Well said Evan.

 

I've observed a lot here.....like in real life I think its a matter of

character as well. Compassion, understanding,  give and take........giving is not everyone's cup of tea.