Online Support....Can it make things worse?

[[tr...]]

KRock!  Thanks for your post, it can never be too much of the positive.

 

I have received a lot of help on this forum, and I have understood my symptoms are quite normal. I now also know, it will take time. But sometimes I'm getting crazy, when I've written it's been 27 months, and gets the answer: "It's not a long time, it can take 4-5 years. So you've got a bit left". NO! now I did it myself, but that was not what I meant! I think I feed my memory by this, and then it feels quite hopeless. So I try not to think about this, and just bring to me what feels good. But the positive here at BB is considering the negative, so I'm so grateful for all help and support!

[[KR...]]

KRock!  Thanks for your post, it can never be too much of the positive.

 

I have received a lot of help on this forum, and I have understood my symptoms are quite normal. I now also know, it will take time. But sometimes I'm getting crazy, when I've written it's been 27 months, and gets the answer: "It's not a long time, it can take 4-5 years. So you've got a bit left". NO! now I did it myself, but that was not what I meant! I think I feed my memory by this, and then it feels quite hopeless. So I try not to think about this, and just bring to me what feels good. But the positive here at BB is considering the negative, so I'm so grateful for all help and support!

 

No problem!! I feel a connection to everyone on this site even though i dont know most members. I was you once upon a time in a very dark place. I can totally realate to what your going through! Please know that your gonna be fine.....time does pass and you do heal.

[[Ph...]]

Yes, online support can make things worse.  I have a rather nasty autoimmune disease and for a time I was going to a Facebook support group comprised of hundreds of other unlucky souls with the same disease, many of them much worse off than me and just barely hanging on.  It bummed me out so badly I could hardly stand it.  So I had to quit going there.  In fact, I quit Facebook altogether.  It can suck the soul right out of you.  (I was also in a Benzo support group on Facebook...same effect.)

[[Co...]]

Yes, online support can make things worse.  I have a rather nasty autoimmune disease and for a time I was going to a Facebook support group comprised of hundreds of other unlucky souls with the same disease, many of them much worse off than me and just barely hanging on.  It bummed me out so badly I could hardly stand it.  So I had to quit going there.  In fact, I quit Facebook altogether.  It can suck the soul right out of you.  (I was also in a Benzo support group on Facebook...same effect.)

And how do you find BB? You can be as frank as you wish.

[[pr...]]

Yes, online support can make things worse.  I have a rather nasty autoimmune disease and for a time I was going to a Facebook support group comprised of hundreds of other unlucky souls with the same disease, many of them much worse off than me and just barely hanging on.  It bummed me out so badly I could hardly stand it.  So I had to quit going there.  In fact, I quit Facebook altogether.  It can suck the soul right out of you.  (I was also in a Benzo support group on Facebook...same effect.)

 

 

i can't go on facebook either. i get serious anxiety from it. all of it, the layout and too much info and just too overwhelming. i do find this forum much more relaxing than any other social network.

[[be...]]

I dropped FB sections as well. Bad for the soul. I found this site to be a life saver at first. I have been doing well so I try not to log on as much. And part of it is because some people annoy me. Yes, they do. : Really...

[[Ph...]]

Yes, online support can make things worse.  I have a rather nasty autoimmune disease and for a time I was going to a Facebook support group comprised of hundreds of other unlucky souls with the same disease, many of them much worse off than me and just barely hanging on.  It bummed me out so badly I could hardly stand it.  So I had to quit going there.  In fact, I quit Facebook altogether.  It can suck the soul right out of you.  (I was also in a Benzo support group on Facebook...same effect.)

And how do you find BB? You can be as frank as you wish.

 

Facebook's platform and the immediacy of communication in the groups (turbocharged with live video streaming of desperate, miserable people) just ain't the right medicine for benzo withdrawal.  Too intense, draining, emotional and narrow in scope.  BB is basically the opposite of all of these characteristics, which is why I still stop by here.  No complaints whatsoever, as long as there are no more forays into presidential politics, LOL !!

[[pr...]]

I dropped FB sections as well. Bad for the soul. I found this site to be a life saver at first. I have been doing well so I try not to log on as much. And part of it is because some people annoy me. Yes, they do. : Really...

 

 

i get really irritated and annoyed too but i know that when that lifts at times and will go away -- i know i will be even better. it is a good healing sign for me when the annoyance and irritation lifts...not too often though yet.

 

it's interesting because i know two people who use to be on here who don't like coming on here any longer but they are okay with being on facebook. weird isn't it? probably all about the withdrawal. i know that when i will be able to go on facebook that i will be better too and i hope to at some point to promote my music.

[[Ph...]]

The tricks that Facebook uses to hook people into continuous use of the platform are insidious.  If I were religious, I'd say they are downright evil.  Then we have Facebook's business model, in which the participants themselves (and their data) are for sale.  That was the last straw for me.  (Thanks to The Guardian...yep, foreign media again has to tell us what's really going on.)  I've been doing some deep dives into that issue lately.  It's absolutely outrageous.  And it's only part of a much larger problem, i.e., what's the internet really doing to our minds?  More on that later.

[[pr...]]

The tricks that Facebook uses to hook people into continuous use of the platform are insidious.  If I were religious, I'd say they are downright evil. Then we have Facebook's business model, in which the participants themselves (and their data) are for sale.  That was the last straw for me.  (Thanks to The Guardian...yep, foreign media again has to tell us what's really going on.)  I've been doing some deep dives into that issue lately.  It's absolutely outrageous.  And it's only part of a much larger problem, i.e., what's the internet really doing to our minds?  More on that later.

 

i agree with you and also have been doing some deep dives about all of this... i can't tell you the anxiety and guilt i feel when someone says to me to "promote this on facebook or twitter". "promote this - promote that"... i get downright crazy about it. i honestly do not know what i am going to do when it is time for me to really promote myself as an artist? the only thing i may do is just go out and perform and that will be my promotion. i'm sure it won't be good enough. it's terrible how all of this hooks us in. my niece was home all day yesterday because my brother was out working -- i kept checking in on her as she literally stayed in front of the computer for over 3 hours straight. it worries me.

 

and societies will still weep and feel depressed as they are literally paying and defending their countries their governments, their social medias and never really know why they are feeling horrible.

[[be...]]

#deletefacebook. Let's see if we can hurt Zuckerberg. I got notice that Cambridge had my data. Not from me, but from someone I friended who took a survey. :tickedoff:

[[Fi...]]

Never ever signed up for Facebook in the first place. Yay!

[[be...]]

Smart.......................

[[Fi...]]

I'm not sure it's smart, Benzogirl, more just that I could see it was crazy-making and wanted no part of it.  I hear friends talking about all the hurt they suffer because their daughters-in-law don't post pictures of THEM with the grandkids or whatever and I just thought, wow, why even go there?  Or young people who have breakups and then eat their heart out over the postings of their exes.  You can see that right here on BB.  People just freak about how many likes they get or who unfriended them.  I am totally old fashioned and want my relationships to be literally face to face.  Or, if not that, at least personal, one to one emails.  It's great that people here on BB can find others in their situation and not feel so lonely about it.  It was a huge breakthrough for me when I first signed on.  But as people start to get well, they really need to form actual personal relationships AWAY from here.  Those are the relationships that give you good brain hits.  After a point, nobody on BB can really help you or offer what you need to get back out into the world.

[[be...]]

I agree

 

I think it’s also can be a site for cons/predators. I got so many friend requests from odd people . I mainly hung on there because of my friends who show goldens. But I think one on one is much more important .

 

I was at the grocery store the other day and I mentioned to the 20-something clerk that there were no video games when I was younger. She really felt sorry for me and said that’s a shame . I have read study after study that the loneliest people in America are the young. Because they use their cell instead of  face to face contact. When I mentioned to someone I often leave my cell phone st home, they are shocked. Well so am I.

[[Ph...]]

I'm not sure it's smart, Benzogirl, more just that I could see it was crazy-making and wanted no part of it.  I hear friends talking about all the hurt they suffer because their daughters-in-law don't post pictures of THEM with the grandkids or whatever and I just thought, wow, why even go there?  Or young people who have breakups and then eat their heart out over the postings of their exes.  You can see that right here on BB.  People just freak about how many likes they get or who unfriended them.  I am totally old fashioned and want my relationships to be literally face to face.  Or, if not that, at least personal, one to one emails.  It's great that people here on BB can find others in their situation and not feel so lonely about it.  It was a huge breakthrough for me when I first signed on.  But as people start to get well, they really need to form actual personal relationships AWAY from here.  Those are the relationships that give you good brain hits.  After a point, nobody on BB can really help you or offer what you need to get back out into the world.

 

Absolutely!

[[Ph...]]

I agree

 

I think it’s also can be a site for cons/predators. I got so many friend requests from odd people . I mainly hung on there because of my friends who show goldens. But I think one on one is much more important .

 

I was at the grocery store the other day and I mentioned to the 20-something clerk that there were no video games when I was younger. She really felt sorry for me and said that’s a shame . I have read study after study that the loneliest people in America are the young. Because they use their cell instead of  face to face contact. When I mentioned to someone I often leave my cell phone st home, they are shocked. Well so am I.

 

Strap on those seat belts, folks.  I was listening to a podcast at "Big Picture Science" last night about Virtual Reality technology and the rapid growth in sales of Virtual Reality headsets and apps.  Today's Facebook members see each others posts, watch each other's video feeds and give each other little endorphin hits with hearts and thumbs up's.  And that's addictive enough.  But tomorrow, they'll actually be with each other as fully-animated avatars in virtual worlds.  You think it's hard to tear your kids away from their devices now?  You aint' seen nothin' yet.

[[tr...]]

I noticed a big difference between FB and BB. Here are all supportive, and really want to help each other. I was a member of FB for just withdrawal. Some ladies were very tough, and judging. Then knew, that they were on benzo, and didn`t make a dropdown. Instead, they generally complained about their own illnesses. I kindly asked, why they were there, if they didn`t want to stop Benzo. Then, I got an angry response: "I don`t intend to do like you, and crawl all four to dry the floor. I also have a family, and a house, to take care of." Then it felt quite meaningless. But it's not here, everyone is fighting and supporting each other. So to me, it's a very big difference!

[[KR...]]

Just popping in to check on this thread. It’s come a LONG ways from back when I first started it. I just want to leave a few words of encouragement ......please remember....you all are a lot stronger than you think. Everyone has the will to survive. Your body knows what to do to heal. Trust yourself and the process....let time pass. My withdrawal took me to the depths of hell and back. Not kidding when I say that. Hands down the worst thing I’ve ever been through. I will NEVER forget it....thus the reason I come here occasionally. This place holds a spot dear in my heart. Knowing people here  are suffering like I did is both sad and concerning.

 

Looking back....I was in such a bad place with all my symptoms I really didn’t know how I would ever get better. I couldn't believe that benzos could rock my world like they did. Such a powerful and cruel drug and process. All I could do was pray and wait it out. I did a lot of things wrong with the cold turkeys and detox centers. I wouldn’t advise that path to anyone. It’s not for the faint of hearts.

 

Thanks to this site and the people I’ve met here... I survived. It gave me the support I needed to make it through one more day....just when I didn’t think I could do it. I needed to talk to other people that were going through the same thing I was. And this site did that for me. I’m not sure I would be here today without this site....it was truly a God sent looking back on it. It was the life line I needed.  The members here talked me through some of my darkest hours. No doctor or outside therapy could ever substitute the type of support and care I received here.

 

I want to thank Colin and all the people that make this site possible. They do a great job providing a safe haven for people going through this.

 

My only regret is ....I wish I would of took videos of my withdrawal to show people on line how bad I was. The beginning and the end results of my withdrawal are truly amazing. It would encourage everyone and let them know you WILL heal. Seeing is believing......and I would of never believed it if I hadn’t went through it.

 

Please know....If I can make it through my nightmare.....so can you. I had a ton of doctors telling me my withdrawal symptoms were all in my head....that I had all these medical issues. That I might be disabled for the rest of my life. Yes they said that to me ....so that might tell you how bad I was. Doctors said I might have possible brain damage etc. Also that there was NO way it could still be withdrawal symptoms....blah...blah...blah. Looking back it was all total bullshit. The things we experience during withdrawal are VERY real. Don’t let anyone ever down play it or tell you it’s not. All the stuff the doctors told me that I would have to live with forever are now GONE. Poof!! Vanished!! It was benzo withdrawal the whole time. Members here kept telling me it was...I just had to wait it out and let my body heal.

 

Please stay positive and know it does end. I’m proof of it.

[[go...]]

Do you mind me asking how long it took you to heal and what symptoms you had.

 

I'm 10 months off short term use, and bedridden with dizziness, fatigue, severe depression, loss of hearing, blurred messy vision, all sorts of madness and I've been getting worse since april with no windows. It is really starting to scare me why I am so sick.

 

 

[[pi...]]

Thanks KRock!!! 

 

[[In...]]

Yes, I do believe that online support through benzo Facebook “support” groups can make things worse.

[[Co...]]

Yes, I do believe that online support through benzo Facebook “support” groups can make things worse.

 

OK. I'll bite.

 

Do you mean this in general terms, specifically about (or including) BB, or are you just referring to your own experiences? Genuine question - despite how my questions might come across, they are not loaded. It is just that your comment seems to imply something and I'm not entirely sure what.

 

In general terms, I have to agree, that support spaces like (and including) BB are not for everyone. We try to get it as right as possible here, but at the same time allow for a multitude of perspectives. Some of the stated perspectives here are antithetical to my own (and not always very constructive), but I aim for being as nonrestrictive as possible upon comment.

 

In short: spit it out! You might receive some push-back, but there are no consequences for genuine opinion (unless designed to be unsupportive or is plain abusive to members or the aims of the community). There are no specific aims of BB, except to support members in their aims for better health (yes, this even includes staying on benzodiazepines or reinstatement if that is what they feel is best for them).

 

How are things for you now?

[[In...]]

Colin,

 

Thank you for seeing my response. No one else responded which surprised me, but you are definitely the best person to see my response and ask why I think this.

 

First of all, I do not know much about Facebook in general. I have joined one online Facebook group called beating benzos started by a member here, but I could not understand how Facebook worked, so I kind of gave up on it. I do not even know how many active benzo Facebook groups there are.

 

Then when Teva disconcontinued their version of clonazepam, a new member here started a Support group called the Teva Discontinued Support Group. That was back in June of this year. She and I became somewhat friendly with each other here on BB. The intention of this group (as she described it herself) was to have discussions and provide support for those numerous members who could no longer get Teva clonazepam. My interest was because I had started out on Actavis clonazepam which Teva bought as an acquisition back in 2015? Not sure about the date. And now in 2018, Teva was promoting the Actavis clonazepam.

 

But when I went to my pharmacy to obtain the Actavis back in 2015 (I think it was then), I was told that Actavis was not there any more, and they were now switching to Sandoz. So I took the Sandoz for (guessing again) about a year, and had to adjust to it. I did adjust, and started to taper it. Then, all of a sudden Actavis was available again, so because I did so well on it (made most of my tapering progress on it), the doctor advised that I should go back to it which I did. Then, once again, it became unavailable again, so I decided to take the Sandoz again. I made this decision because I figured my CNS was familiar with it so if I had to switch, this would be the best choice. The pharmacy now was no longer stocking Sandoz, but they were very willing to order it for me. These pharmacies in the US switch their generic brands of all medications quite a bit so I was grateful for the special order. I don’t want to go on like this, so I’ll just shorten this by saying that I’ve been switched from Actavis to Sandoz 4 times. So when Teva stopped their version and was now promoting the Actavis again, my doctor wanted me to go back to it. So I’m am now tapering onto it again as I’ve done before.

 

That group that my friend started had many questions about this and that as far as what they would take in place of the Teva and other generic brands that were now available. Some were very concerned about the disruption and adjustment. It was pretty much a calm group overall. I made numerous calls and sent emails to Teva and other companies to find out information that I passed along to the group. This was difficult for me as I have a rare disorder that affects my ability to speak, but I did that nevertheless. And many were grateful for the information. Then a few weeks back, a member of BB came back after 2 years of absence and joined the group. And out of the blue, another person that must have been new joined also. One was full of information about how these benzo Facebook groups were now threatening lawsuits against doctors? companies? She was not specific, but between her and this new member, it started what I saw was some sort of panic type response, so I responded by trying to calm folks down.

 

I even went onto google to look for active benzo Facebook groups to see if they were threatening litigation or what was going on. I did find a few that were recent, and they had warnings about taking these drugs and lots of links to other groups that were a bit scary. So that’s the Facebook story and my reason for why I do not think that a benzo Facebook support group is a good thing and that it will make things worse. It’s actually hard for me to find active benzo Facebook groups because I’ve never really participated, but I did try and found a few. And as far as the support group here, when I tried to calm that group down, the one newer member responded with a bit of outrage and accused me of being cruel to her and making her cry. The other member who had recently come back just stopped posting, although I see she has posted today on that support group.

 

She and I both had joined the Long Hold Support Group so I’m only guessing when I say that’s the reason for her posting today. Yesterday, I expressed my concerns on the Long Hold Support Group about being there or anywhere here as that response on the Teva Group troubled me so much. I probably should have just kept my mouth shut because plenty of people there were very upset that I would consider leaving them and this went on throughout the day. I surely didn’t expect any of this, but things went like a runaway train yesterday on that Long Hold Support Group as far as me staying there and what my concerns were. People blamed themselves no matter what I said and it just kept getting worse. No contention or anything like that or arguing. Actually a very nice group.

 

And the irony here to me is that the person who started the Teva Group has had her own problems of extreme illness with an AD and getting ready for that hurricane on the east coast of the US and has not posted for awhile. I never have posted again on the Teva Group since that one and only post on the 7th of September when I tried to bring some sanity and common sense back. She also posted about the same time, and reiterated  her reasons for starting the group, but it seems like I took the heat.

 

Seriously, it’s not a huge deal other than I don’t like to hurt anyone, but it seems like in the throes of these drugs, people are easily outraged and get there feelings hurt. I understand it myself because I obviously got mine hurt.

 

I doing ok. These constant generic switches aren’t doing my CNS any good, but I keep trying to get off this stuff. This is not about B.B. at all; it’s really about Facebook and the supposed supportive benzo groups. Of course, you can always take a look at those two groups and see what you think. I’d appreciate it if you let me know what your thoughts are if you have any about all this.

 

There was no moderator intervention at all except by Green Cup who just had become one and wanted to make me feel better. That’s the story.

 

Just took a look at both groups. All calm and quiet.

[[Ho...]]

but it seems like in the throes of these drugs, people are easily outraged and get there feelings hurt.

 

Intend I totally understand your point of view. I tend to be matter-of-fact and blunt, and my writing shows that and is often taken in a completely different manner than what I intended. I can't tell you how often I've written a response to a post and thought "oh no, that won't go over well" so I don't post it.

 

And at the same time, the way some people have responded to my posts has kind of thrown me for a loop too.