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

[[jr...]]

Well, as a health care professional, I can unequivocally state that online support through Benzobuddies has helped me through the worst time in my life.  I believe that was the original question. 

[[In...]]

jrvmc,

 

I agree with you as to the original question: Online support has helped me quite a bit. Without it, I wouldnt have a clue about some of the most elementary aspects of all this benzo stuff: updosing, reinstatement, dry cut tapering, the "rule" of 5-10% for the average amount to taper, liquid titration, micro tapering, and thus the whole enchilada. Yeah, I didnt even realize that all my odd sx had anything to do with X taper. And Im also a health care professional. So I really appreciate getting all this info.

 

And since we've once again gone off into "other areas" which I have previously addressed on this thread way back when it first started, I will say again myself that there is really no way to assess how the general population that uses Benzos succeeds in getting off them cause there is apparently no real money in doing this kind of research. In addition, this would require that drug companies solicit volunteers for such a study. So those voluteers would come from many areas, those who took them for short times, those who took them for longer times, and those who are still on them to just name a few of the overall population.

 

And yes then, a randomized, controlled study of a huge population of people with a variety of benzo experience, that are cognizant of what they took and maybe still taking, and a willingness to share this info with researchers. I dont really think this will happen. And as I said before, way back on this thread, if this were achievable, the research would show that the results would fall onto the infamous "bell curve" for the results. The ideal is that those surveyed would fall within 2 standard deviations of the mean/average of the survey population, and that would be that they had small to moderately small difficulty getting off this stuff.

 

Then the further out one goes on this curve in both directions, into the infamous "critical regions" are those (most likely on the right of the curve) who have NO problems, and those on the left of the curve who have all kinds of problems. So perhaps anyone taking on this research will discover this as this is part of the science of statistics. But who can really say as it just seems that this study will not be done anytime soon.

 

And this support group is made up of people who are experiencing a variety of difficulties withdrawing from benzos for a variety of reasons. So if it is not really representative of that great other body of people who take them or have taken them and are having nothing difficult to report,  then all we can do here is address the ones who are having problems, and be glad for the ones who arent.

 

It would be great if all the R and D going into "everything else" out there is also going into this area, and I sure hope it does at some point. However, it is just next to impossible for me to wait for that, and therefore, I focus on my issues and how I can get off this stuff, and I am not ignoring anything about statistics per se. It is a valuable science w/o doubt, and used to assess past results and to predict other results in many areas. Im just not sure that we need to focus on it here on this forum as it changes very little if anything.

 

Intend

[[jr...]]

jrvmc,

 

I agree with you as to the original question: Online support has helped me quite a bit. Without it, I wouldnt have a clue about some of the most elementary aspects of all this benzo stuff: updosing, reinstatement, dry cut tapering, the "rule" of 5-10% for the average amount to taper, liquid titration, micro tapering, and thus the whole enchilada. Yeah, I didnt even realize that all my odd sx had anything to do with X taper. And Im also a health care professional. So I really appreciate getting all this info.

 

And since we've once again gone off into "other areas" which I have previously addressed on this thread way back when it first started, I will say again myself that there is really no way to assess how the general population that uses Benzos succeeds in getting off them cause there is apparently no real money in doing this kind of research. In addition, this would require that drug companies solicit volunteers for such a study. So those voluteers would come from many areas, those who took them for short times, those who took them for longer times, and those who are still on them to just name a few of the overall population.

 

And yes then, a randomized, controlled study of a huge population of people with a variety of benzo experience, that are cognizant of what they took and maybe still taking, and a willingness to share this info with researchers. I dont really think this will happen. And as I said before, way back on this thread, if this were achievable, the research would show that the results would fall onto the infamous "bell curve" for the results. The ideal is that those surveyed would fall within 2 standard deviations of the mean/average of the survey population, and that would be that they had small to moderately small difficulty getting off this stuff.

 

Then the further out one goes on this curve in both directions, into the infamous "critical regions" are those (most likely on the right of the curve) who have NO problems, and those on the left of the curve who have all kinds of problems. So perhaps anyone taking on this research will discover this as this is part of the science of statistics. But who can really say as it just seems that this study will not be done anytime soon.

 

And this support group is made up of people who are experiencing a variety of difficulties withdrawing from benzos for a variety of reasons. So if it is not really representative of that great other body of people who take them or have taken them and are having nothing difficult to report,  then all we can do here is address the ones who are having problems, and be glad for the ones who arent.

 

It would be great if all the R and D going into "everything else" out there is also going into this area, and I sure hope it does at some point. However, it is just next to impossible for me to wait for that, and therefore, I focus on my issues and how I can get off this stuff, and I am not ignoring anything about statistics per se. It is a valuable science w/o doubt, and used to assess past results and to predict other results in many areas. Im just not sure that we need to focus on it here on this forum as it changes very little if anything.

 

Intend

 

Well said, Intend.

 

Furthermore, there are many health care professionals on this site, including Ph.D's.  I doubt many would be willing to be guinea pigs in a study for benzodiazepine dependence and withdrawal.  For the first month after my c/t I had absolutely no idea that every single symptom I was suffering was due to w/d.  It was only after finding this forum that I learned that everything from the anxiety to the electrical shock type symptoms were a direct result of discontinuation of Klonopin.  All we can do is share and learn from one another, and take what we can use from people suffering in the same way.  Heather Ashton's research is invaluable to me.  At least she has put a name to what I am going through. 

 

Hugs,

 

Jenn

[[to...]]

Please use paragraphs!  I agree with your statement but could not read past the first few sentences.

[[jr...]]

Please use paragraphs!  I agree with your statement but could not read past the first few sentences.

 

I'm not sure what you mean.

[[In...]]

Tonni,

 

    If you mean me, I did use paragraphs. Just didnt indent the first 5 spaces as with tradional paragraphs. I did break up my paragraphs with double spaces in between, however. Theres lots of ways to do this. Perhaps traditional way of indenting 5 spaces is best. Not sure if you mean me, but I can always indent as I just did.

 

    Tradition can be best when it comes to long posts. Happy to do it if it helps.

 

Intend

[[jr...]]

Tonni,

 

    If you mean me, I did use paragraphs. Just didnt indent the first 5 spaces as with tradional paragraphs. I did break up my paragraphs with double spaces in between, however. Theres lots of ways to do this. Perhaps traditional way of indenting 5 spaces is best. Not sure if you mean me, but I can always indent as I just did.

 

    Tradition can be best when it comes to long posts. Happy to do it if it helps.

 

Intend

 

I forgot about indenting.  That probably would help with the long posts.

[[...]]

eh, I treat the internet as casual conversation and consider that not all members speak English as a first language.

 

I do have trouble with too many commas as that's how my thinking process is working in my benzo aftermath - spurts of phrases. But for the most part, I like to "boil it down" to the ridiculous, or try to say it as simply and in as few words as possible - something that will stay with a person ... like advertising slogans. Advertising slogans are quite powerful, aren't they? 

 

For instance, trying to figure out where we are located on the bell curve or whatever other graphic comes to mind, is good and worthy of discussion. Percentages are important, but don't matter much to us if we are NOT among those who are suffering dreadful withdrawal. Those who cakewalk through this don't need to research and never come to a benzo site for peer support.

 

We are simply more sensitive to the negative effects of these drugs than the majority, and I illustrate it with this:

 

SOME people can withstand being stung by a swarm of bees; while others die after only one or two stings.

 

I think that is a good illustration to use when talking to your doctor; it hits home, it's graphic, and it cannot be refuted.

 

 

Some people are more sensitive to these drugs than others, and doctors need to know it. I think they DO know it, but are in denial - especially pDocs ... after ALL they are in the profession of "mental health" and addiction, aren't they?

 

So.

 

Another illustration:

 

If a doctor cannot accurately diagnose Iatrogenic Addiction, they need to get out of the business.

 

it's simply stated, and impossible to refute.

 

another:

 

I didn't abuse benzos, benzos abused ME!  ... the drugs abused me.

 

As far as online support goes, I am sure that many who have come here seeking help and successfully tapered off .. would still be on them, PLUS additional meds (usually a cocktail) to counter the negative effects of benzos. Or worse.

 

so, as for medication cocktails:

 

There ARE no drugs able to cure the negative effects of benzos.

 

 

 

Addressing the title of this thread,  Online Support....Can it make things worse? sadly, there are really no equivalent and local community support groups for benzos; we are an isolated bunch spread spread far and wide over the globe.

 

so:

 

For lack of any other support, where else can we go?

 

Until I joined my first support site, I NEVER knew I could have seizures and possibly die coming off this drug. I was simply told by my doc that I, "need to be on this like a diabetic needs insulin." To which I now say:

Insulin is not addictive nor foreign to the body. Benzos ARE addictive and ARE foreign to the body. Nobody needs to be addicted for life!

 

Indeed:

 

When becoming addicted to a substance "to control symptoms" you will most likely begin to need more of the drug to get the same effect, and really end up still suffering the original malady.

 

With benzo addiction you still have the same problem, but NOW with *extra added ingredients* .... PLUS the host of side effects that come with the *extra added ingredients*.

 

and side effects:

 

There are no side effects; only direct effects. You get the effects as a direct result of taking the drug.

 

We call it side effects because we (and the medical community) want to minimize the impact on the thought process. And, in fact, the drug industry actually embraces these "side effects" as desirable ... once there is a demand for it. Viagra is the perfect example. "It was initially studied for use in hypertension (high blood pressure) and angina pectoris (a symptom of ischaemic heart disease)."  http://en.wikipedia.org/wiki/Sildenafil

 

 

So, yes, there ARE no side effects. Only effects nobody wants to talk about. And THAT is why we are here, because what really makes things worse - is not knowing what is happening to us.

 

These poor souls who don't know what is happening to them tend to lose it; stay addicted for life; or, sadly, lose their life.

 

You know, even IF I were to lose my life to these drugs, I would really want to KNOW what was happening. So as bad as it can get, I don't think support make things worse.

 

[[we...]]

cute post, thanks for the good "lines". 

[[jr...]]

Good post and well said, Gail.  If I had not found BBs I believe I would have reinstated within a month or two due to the horrendous w/d.

 

I envy your "lines".

[[wa...]]

Gail,

 

Great post!!!

[Guest [Da...]]

From jjbutterfly to Danni: Friday, April 13

Danni you said "In regard to Prof Ashton's list of w/d s/x and other medweb sites; there are a mind-bloggling number of them according to these sources. Dwelling on any of these is not a good idea."

These sites are not founded in evidence based research! That's my point. I am speaking as a health care professional. Whenever you talk to a patient about treatments or health teaching you talk to them using health based knowledge grounded in evidence. Do you understand what I mean by evidence based?

 

Yes, I do know what you mean by evidence based on scientific studies and peer reviewed. I took statistics and methodology at university and hold a Sociology honours degree if you must know. I don't want to get my university notes out and discuss this because I don't care to. I want to concentrate on my tapering and getting healed.

 

I do understand your point of view as a health care professional. But you have to start somewhere to help people.

 

Tell me, since no such studies exist as you pointed out, where am I to look for information on benzos after 13 years of being on Clonazepam (my anti-anxiety meds)? I knew nothing (zero, nada) about benzos and I wanted information on benzos and how to get off benzos. I couldn't get it from my pdoc because he didn't have it. He wanted me to do a really quick taper after being on benzos for 13 YEARS.  There is zero information on benzos where I live in my community. I got my benzo information on-line from a help forum and read Prof Ashton's work plus other sites by using critical research. I am now tapering down and managing my w/d s/x.

 

Intend, Jenn, Gail...just wanted say your posts were excellent and paragraphs were perfect.

 

Tonnii...how many lines do you want in a paragraph? No need to throw a loop in a discussion like that. We are all trying to communicate the best we can. Intend and Jenn had the right amount according to office procedures and indenting is no longer fashionable unless you work in a law firm. Just take it easy and read slowly. Benzo brain affects me also and I just read it later.

 

 

There was no harm intended here. I'm done with this thread. Exhausted myself to get the knowledge I wanted and explored my insecurities. I liked the discourse. I have concluded that on-line forums has helped me more than it has hindered me. I will take breaks as needed. Oh and I am dealing with my w/d s/x favourably so far.

 

Danni

[[jr...]]

 

 

Very well said, Danni.

[[KR...]]

Telling people in withdrawl how to write and communicate is one of stupidest things Ive seen so far. People can barley think straight let alone write. I think people should be able to "peck" away as best they can without criticism. I mean come on guys. People are in major distress. Indenting paragraphs and using proper punctuation is a F'ing joke while going thru this. Oops !! I misspelled through. Shoot me.

 

Rock

[[jj...]]

I did not intend to offend anyone by bringing up the whole research thing. I talked about it, because of my own frustrations. Being on this drug and not having the resources to back up how I am tapering is hard, because I trained in nursing and in school we were always told you never do anything without evidence based practice!

 

I merely wanted to point out that this journey is not one with a guided hand from a well informed health care system. Wouldn't you feel awful knowing that the very things you studied, didn't talk about the dangers of this drug, and even talked about the benefits of it?  I am embarrassed as a nurse for getting myself into this situation and not having the arsenal to help myself or others who look at me and ask why I don't have the right information because I am a nurse.

 

Again, I apologize, I was not trying to point out people's lack of grammatical skills or knowledge. I know this is tough, more tough for some than others.

[Guest [Da...]]

KRock:

 

Just wondering ...I would like to know who are you referring to when you make those statements in your last post? Personally, I'm w/d from benzos right now. So, I'm supposed to be what again...

 

Why did you have to say that?

 

Danni

[[Ch...]]

I did not intend to offend anyone by bringing up the whole research thing. I talked about it, because of my own frustrations. Being on this drug and not having the resources to back up how I am tapering is hard, because I trained in nursing and in school we were always told you never do anything without evidence based practice!

 

I definitely wasn't offended as I, like everyone else, am seeking validation through proper medical research.  Think about the following and you will understand the lack of proper research.  How can you prove you are in withdrawal to a total stranger? 

[Guest [Da...]]

I did not intend to offend anyone by bringing up the whole research thing. I talked about it, because of my own frustrations. Being on this drug and not having the resources to back up how I am tapering is hard, because I trained in nursing and in school we were always told you never do anything without evidence based practice!

 

I merely wanted to point out that this journey is not one with a guided hand from a well informed health care system. Wouldn't you feel awful knowing that the very things you studied, didn't talk about the dangers of this drug, and even talked about the benefits of it?  I am embarrassed as a nurse for getting myself into this situation and not having the arsenal to help myself or others who look at me and ask why I don't have the right information because I am a nurse.

 

Again, I apologize, I was not trying to point out people's lack of grammatical skills or knowledge. I know this is tough, more tough for some than others.

 

Dear jjbutterfly:

 

You melted my heart with your words.  You are so nice.  The thing that we all know is that w/d is real. Symptoms are real. I am so proud of you to have the courage to tell us your real feelings.  I think that we all can work together in all our respective countries and educate as best we can with what we have.

 

I convinced my GP, but he didn't need it because he knew already. To have a 66 year old doctor tell you that benzo w/d s/x are real and that the lower you go the higher w/d s/x can become is  upsetting to hear back when I started.  So what I thought would be a good idea is to practice coping techniques throughout w/d.  For instance, when I dealt with DP the other day, I thought, wow, cool, the world looks different. To me, I train my mind to see it differently...almost stoned as a coping mechanism.  Anyway, I think we can share stuff like that. Coping techniques, tapering plans (w/d from different benzos and dosage) and other things.  Stuff we all know by being benzo wise by reading info and because we are living it or lived it. We know but the others on benzos don't.

 

Love and 

 

Danni

[Guest [...]]

hey Danni I know the reference was not about you.  I have to support Krock in saying who really gives a flying f about the perfect paragraphs.  Ive got a University degree to but its not much good to me at the moment I cant write much but dribble at the moment.  woops hang on im going to paragraph  NOW. lol

 

So I dont care who writes what or says what just that they write helpful and supportive information I dont much care if I get it one letter at a time.

 

Lizzy

[[Ho...]]

When writing on this forum (and others for that matter), it's understood that a space between paragraphs is acceptable and the norm. Indenting, isn't necessary. If you have trouble reading another's comments, as suggested earlier, take your time. You may need to read a post more than once to understand what's being said.

 

Now, let's get back to the original topic of this thread.

[[ja...]]

Telling people in withdrawl how to write and communicate is one of stupidest things Ive seen so far. People can barley think straight let alone write. I think people should be able to "peck" away as best they can without criticism. I mean come on guys. People are in major distress. Indenting paragraphs and using proper punctuation is a F'ing joke while going thru this. Oops !! I misspelled through. Shoot me.

 

Rock

I couldn't agree MORE..

Geez That's something. If you look at my posts earlier on in the game it looked like I was a small child. If anyone had called me out I may have never Posted again.

LOL Danni.. This had nothing to do with YOU..Why did you think it did KRock was referring to anyone who was stating if they could make it more clear and use Proper Punctuation and Indenting Paragraphs.I think it was quiet Clear...Anywho.. JRock looks like your Original Thread took on a life of its OWN.

This is a great Thread lets bring it back to its Original Purpose. It was full of Awesome Experiences and Great Words of Wisdom ,Coupled with a Plethora of Knowledge!!!!

Bring it home Brother...lol

 

Lizzy  ..Way to go .You are so RT..

 

~J

 

[[ch...]]

Like I said, for something to be more accurate you need more than one research article. Ashton was one researcher. No one since her has done randomized control trials to look at other interventions for people who want to withdrawal from benzos. Many health related issues continue to reveal a learning curve for health professionals and patients/clients.

 

Ashton didn't do any studies on the association of foods and benzo withdrawal, genetics, ethnicity, etc. The list could go on and on. I'm not bashing Ashton, rather, stating that no one has continued to study factors that effect benzo withdrawal into the 21st century. This is what is needed for health care professionals and patients to make more informed decisions about how best to approach withdrawal.

 

 

For example, what if there was a gene in our biochemistry that could somehow be turned on or off through some mechanism to down regulate Gaba receptors in our brains, so people suffer less withdrawal?  Do you know how much research has been done now, to recognize certain genes that are turned on or off in certain disease processes.? I have a friend who is doing her Ph.D in cancer research and finding genes that get turned on and result in an over production of cell growth! Do you know how much money is going into these kinds of projects? Millions! They have 4 research buildings in downtown Toronto dedicated to this very cause, with thousands of students and scientists working on projects to help cure cancer!

 

The inaccuracies in how to approach an appropriate taper have more to do with the lack of recent research than anything else! Health care professionals and patients have little information to use to make an informed choice on how best to taper! It's like an analogy for Vimy Ridge in the first world war. There are signs and fenced off areas around the trenches where men fought and died at this very spot in France.  The fence is there to protect the public from stepping in any areas that are buried with bomb shells that we still don't know an exact location for.

 

People suffering from benzos are going in blind in an open mine field. Each of us approach a taper, not knowing what the outcome will be. Will we suffer and step on a bomb shell or will we be able to step around the shells?

 

If someone could just get funding, and do more research the "inexactness," of medicine would be less so, for people addicted to benzodiazepines.

 

Many have tried. They get shut down and discredited at almost every turn. You shoud check out benzo.org.uk and look at the emails being exchanged and also the Parliament over there.Also look at the media section there, too. They are way ahead of the U.S. in knowing about benzos and they are not any closer to getting the over-prescribing and/or a protocol to help patients withdrawal from benzos. There is a lot of stonewalling about these medications because the drug corp's know all to well just how many people would have be affected by this. This is HUGE. They are trying to cover their butts. So getting research, although a great idea, has been demanded for quite some time.  I have the original document showing the results of brain scans that were done showing the changes in people's brains that had been on benzos long term. They knew for 30 years.  I can provide references if needed, but going to benzo.org.uk or recovery-road should suffice. Just takes a little researching. There is a substantial amount of informaton about the dangers of these drugs, yet they are over-prescribed still. They haven't even been studied in a clinical trials from Roche, the corp who made them, past 9 weeks of use. How are they even able to prescribe them past that?  Most of them lose their efficacy after 4 weeks of us for panic or anxiety.

 

More research sounds great. Gotta get doctors to start recording the side effects first and taking their patients seriously. Maybe if they were prescribed as directed and not used past the 4 to 9 week timeframe maybe we wouldn't need more research in the first place.

 

Chrisw

 

Chrisw

[[sp...]]

Insulin is not addictive nor foreign to the body.

I don't disagree, just wanted to point out that long-term insulin maintenance for diabetics has a same basic problem associated with it that benzos do: over time the body becomes used to it, and increasing doses are required to achieve a benefit.

[[KR...]]

This site is really starting to bother me with some of the reckless advise that people receive here. I don't know if I was so blind to it when I first got out of detox and didn't know any better? Or its the fact that I'm alot better and clearer in the mind than i use to be and I'm seeing things alot differently? I think its a combination of both.

 

I'm just taken back by half of the things that are said to people here. The things people are being told and advised of can be both dangerous and detrimental to their health. You don't have to search far to find these threads. I'm half tempted to start copying all the posts or a link to them RIGHT HERE for all to read and let you be the judge. I would call it "The List of The Most Dangerous and Stupid Advise You Can Receive While in Benzo Withdrawl". You can scroll through them and read all the whacked out and crazy advise people are getting. 

 

IMO this may be one of the main reasons people just disappear from this site without a trace. They wake up from their HAZE and realize reading this crap isn't healthy and will ultimately hinder their recovery if they continue to do it.

 

Rock

[Guest [...]]

KRock

 

I have been given some really bad advice WHICH I STUPIDLY TOOK I will never do this again.  The advice I was given set me back about aaahhh i dont know two months.  I know the people involved suggested this for me in my best interests but they do not know me or how I reacted to the drug it was not their intention to harm me.  When we are vulnerable though we will listen to everything because we are desperate.  However at the end of the day I got through the worst days of my life being given some wonderful support.  I do understand and I think its the clarity of your mind that is returning and you are starting to function at a higher level.

 

You just have to do what you need to do take the good with the bad as per life in general.

 

Lizzy