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

[[In...]]

KRock,

 

Thank you for your kind reply. I am actually the one who came up with the idea to cross over to klonopin. I had been dry cut tapering my xanax for awhile, thinking that my only concern would be to avoid a seizure. I was not truly educated much on all the benzos, half lives, strengths, and w/d sx one could encounter during any taper. It could have been perhaps described as a somewhat "unplanned" taper as I just cut pieces of the pills over time, doing the best I could and often stopping because I got busy with other parts of life. As this taper progressed downward, and w/o realizing the sx I was having were connected in any way to the taper, I became more inquisitive about what was happening, and I began to research myself on the Internet.

 

Of course, I ended up on Wikipedia, reading "this and that," and from there to Ashton, and where else I cannot remember. I was anxious to continue my taper then and did have more understanding about benzos. I realized that my sx were from my taper, and that a benzo with a longer half life would most likely provide me with better ability to continue to taper with less w/d sx. That was last Nov. 2, 2011 when this realization hit me. I called my doctors office, saying that I needed a med with a longer half life. I cannot say what their thoughts were other than they were in agreement that a longer half life is better, and that the drug that is preferred is Klonopin. They phoned in the Rx, and I went over and got it. The pharmacist said I would "like" it better because any I/W (which I never did have at all when I began my taper) would be gone. He also stated that most people who start out on xanax eventually go to klonopin.

 

My doctors instructions to take the klonopin were to immediately drop the xanax and just start taking the klonopin. But I had done some minimal research as I said so I was aware and understood the half life aspect. I realized that it would take some time to build up klonopin before I could just drop any part of the xanax. I did try a crossover plan I saw on the internet somewhere that just advised substituting .25 mgs. X for .25 mgs.K and doing that every 3 days so that the crossover could be quickly and efficiently done with minimal difficulty. So thats the story. I just tried to do this using that as a guideline with perhaps waiting a litlle more and taking note of how I felt. When I reached 2 mgs. of K and tried to drop X from .75 mgs. to .50 mgs., I had a very scary almost seizure like experience with uncontrollable muscle spasms in both legs that lasted for several minutes. I could not walk to "work out the kinks" of the spasms and just had to let it happen.  At that point, I became afraid to try to drop any more xanax, and decided to wait out what became just constant xanax w/d sx. So I was kinda stuck there for awhile, and I admit afraid. In retrospect, perhaps I could have continued to cross over if I had just used smaller dose exchanges, but I also had noticed other problems with klonopin.

 

I was becoming very depressed and irritable, had some stomach upset, and had many moments where I literally could not think clearly. I concluded that for me, traveling between these 2 meds was not an easy task, that the 2 were not necessarily true "equivalents," and that I felt I could not succeed on klonopin even just taking it at all in place of xanax. My doctor was quite surprised by all of this as I went back on 1/31/12 to speak with her about the difficulties. I got the feeling that I was correct in that most people can kinda "jump" onto these other meds more easily than me. Now that I have gone back to xanax, I have done a more rapid exchange and also found that the w/d from klonopin from my system has been fraught with problems. This really comes down to me being unschooled about how difficult a crossover to K would be for me and also how my brain had acclimated to the K longer half life and apparently some of the Gaba areas it has affected. And then of course, I am now trying to reach some sort of stabilization on xanax again, and it has also proved difficult. I did not know, my doctor did not know, the pharmacist did not know. Its a story of lack of knowledge about benzos in general, and also about the specifics of my individual brain. I doubt that anyone could have known any of this as it is just me, and I tend to think out of the mainstream of general experiences of most who cross to klonopin for the longer half life. But no, it was me with the general agreement of my doctor that it was a good idea.

 

I dont know where I will end up frankly, as this is still a struggle. My good old brain did not immediately "jump' at the reintroduction of xanax, even though I did so "well" on it for numerous years and I have been very surprised by this. I feel I have made some errors here myself and perhaps understand way more clearly how different we all are. Most of the info we have is general to the drugs and the need to go slow and cut small. I wish I had understood more about the benzo experience way back when as my education is taking place now as I struggle to get some stability again. When I spoke about "scary" stuff on BB, it is truly a function of the mental sx I have recently been having due to trying to restabilize on xanax. I have experienced real fear and paranoia and I can truly ramp that up unintentionally by just reading some of this. So I am limiting myself in an effort to keep myself calm and give myself a better chance to feel better.  No one here on BB has given me any medical advice; people have been incredibly supportive and compassionate, and I greatly appreciate it. To some degree, I must just find my way here. I truly wish my brain and body were a little more able to make these changes as I believe it would help me to get off any benzo. But wishing will not make that so.

 

This is long, and I apologize for that. I simply felt a good explanation was in order. Thank you ever so much for your concern. and I will keep trying to find my way.

 

Intend

[[KR...]]

Intend... Wow. What a ride. I'm really happy you explained your whole crossover situation in detail. People need to know about this!!! I was like "I sure hope someone online didn't tell her to switch to a longer acting benzo in the Planning your Taper section of this website". It seems to be the common words in that part of town. Telling someone to do a SLOW taper I can see. But telling someone to do a crossover to a different drug is a whole nother deal. People need to realize that a crossover may not work and CAN lead to further complication. People are quick to tell people to do this based on what they've heard and read about in certain books. Ive seen people switch from Ativan to Valium and take a nose dive as well. So your not alone. Ive also read about those people STABALIZING once they switched back. So DON"T panic. Lots of people do direct tapers from their current medication so don't get down on yourself either. It's doable!! After reading your story and a few others like yours. I hope people take heed on how dangerous a crossover to a different benzo can be. I sure wouldn't want to be the one online telling a member "to crossover to a longer acting benzo" not knowing if the person I'm talking to might fall into the percentage of people that it doesn't work for. Hopefully you will stabilize soon and you can take a break from this madness for a while. You deserve it.

 

Rock

 

 

[[In...]]

Thanks KRock.

 

I agree that advice to make switches like these can be detrimental cause everyone is so different. This is just my story, so its individual for sure.

 

But thanks for all your knowledge and concern. I still don't know for sure that K wouldn't have worked for the taper cause I just couldn't get there. But I know my mental acuity wasn't there like it had been for so many years, and way before Xanax came "into my life." But I also realize  it may may have been compromised by being "on hold" with 2 meds for awhile also.

 

I will keep trying to just stabilize and/or reach a more comfortable state with Xanax again before doing anything else. This brain needs that quite desperately. I am grateful for any and all support I have gotten whether in person or online.

 

Your thread is very interesting and I enjoy reading all the opinions. I've just been caught in the middle of some real challenging stuff here, and some of my posts have reflected that. I'll keep trying to be where I need to be.

 

Thanks again for all your sharp insight.

 

Intend

[[Co...]]

The reason I'm asking is because medical advise is suppose to be prohibited on this site. To me taper advise is medical advise.

 

Hi Krock,

 

I thought a few clarifications might help. You are correct, this community is not a medical advice site - it is all about support. However, of course practical matters will be discussed (at a discussion-based support site), but members must utilise caution when such topics arise. It is about the language we use. So, the sharing of experiences, discussing options, etc., are all fine. What is not allowed is for members to urge other members into particular actions or inactions regarding their medical care (excepting when they propose to do something that is universally accepted as dangerous).

 

The problem word is not 'taper', but 'advice'. We should avoid using this word or language that sounds like 'advice'. I have published some guidance about these matters:

 

http://www.benzobuddies.org/forum/index.php?topic=25837.0

 

I think the following is pertinent to this discussion too:

 

http://www.benzobuddies.org/forum/index.php?topic=13141.0

 

I'd also like point out a stickied topic about the "supported methods". We will support members in any patient-centred withdrawal method:

 

http://www.benzobuddies.org/forum/index.php?topic=9522.0

 

You might like to know that when I was writing the above guidelines about the three supported methods, I ran them past Prof. Ashton for comment - she thought them reasonable and balanced.

 

I would suggest that it would be sensible for members to first look at direct taper. Unless they have already experienced problems quitting, there is no reason for them to suppose that need to follow a more complicated taper method/regimen. So, a direct taper. in the first instance, would seem reasonable, and is what most doctors will suggest. Later, if they experience problems, they might then discuss titration or substitution with their doctor.

[Guest [...]]

Thanks for this post, Colin.

 

The direction this thread was taking was getting me just a LITTLE bit worried. Thank you for the clarification. Interesting (and impressive) that you ran your proposals past Professor Ashton.

 

Xana

[[ha...]]

Interesting to me that direct taper seems to be a first option for people. I am doing direct taper: I ran the idea of cross over to valium by two doctors and both didn't think it was a good idea. Glad to hear this site was run by Prof. Ashton. I know she didn't "endorse" websites, but good to know that she has been aware of benzobuddies.

I think a balance approach here is good. I used to worry about people finding information on the internet, but now find that information I already know can be run by information in a site, then if it is good, I am comfortable taking the information from that site to a further level.  I think it is good that we can get both research articles as well personal testimonials  from people. It is all about trying to look at it from a knowledge gathering perspective, rather that accepting information on faith alone. I think many of us took our physician's information on faith and now need to rethink our approaches to that source of knowledge as well.

[[KR...]]

                           

          www.merriam-webster.com/dictionary/advise

[Guest [Pf...]]

I think Ashton does underestimate or at least downplay how bad it might be for some people.  She acknowledges that it is possible, but speaks as if a taper is done properly that the chances for real problems are small and can be manageable.  She seems to think the big problem is over prescribing and people c/t'ing, not that many people who go slowly often have problems.

 

In all fairness, she does say that no one should be forced off etc.  But I wished that she said the following "Many people who have some symptoms when on, end up with debilitationg symptoms for a long time when they get off, even with a slow taper.  While that may not be the majority, it is a definite risk.  Anyone thinking of stopping should be aware of this possibility."

 

As much as I was concerned, it was much worse and much longer than I thought it would be.  And I was not prepared, either internally or externally.  I should have taken a leave of absence from work and focused on the problem.

 

Granted, she acknowleges it as much more of a problem than most.  Every doctor I spoke to said "Oh, you shouldn't have much of a problem"  even when I said that I had heard it could be difficult.

[[ja...]]

Wheew I was getting nervous...

 

I almost thought that was a Google.. Thanks It was Webster, Much better.

Advise that's a great Definition ,

 

Thanks again KRock I really like this thread and I think it has so many different prospectives.. Its a Good one. Keep it up I think its a healthy thread of many peoples experiences on what was good and what was bad for them in w/d. I know I had both. Mostly good . But darn that Google.lol

 

Your friend~Jenny

[Guest [...]]

Pfeff:

 

As much as I was concerned, it was much worse and much longer than I thought it would be.  And I was not prepared, either internally or externally. 

 

Oh so true! I didn't have a clue when I was put an a way too fast taper. I knew Xanax was very addicting but I thought (I guess) in the same league as say smoking. Giving that up after 10 years was easy. No aids at all.

 

The psychiatrist who started me up was of the opinion (and still is) that only 'sensitive' people have problems. I am still only just getting really mad about the fact my 80-100mg Valium equivalent dose of Xanax was basically halved in three days. Probably because down here at 1.7mg Valium I am still suffering fairly badly in terms of symptoms and living a normal life.

 

I wasn't prepared either.

 

Xana

[[ha...]]

I agree that it would be nice to have more warnings about the benzos. I am thoroughly impressed by Professor Ashton and would like to see someone take her work and move it even farther forward. When I think that she did all she did without anyone having any idea about the benzo withdrawal problem and she was able to figure out tapering - amazing. We are all startled when we realize what we are in for. Can't imagine being a pharmacist and trying to figure it out without any clues!!! This is where I am so glad for the internet. Her work would have been buried to me if I had tried to search for it any other way.

[[KR...]]

I think Ashton does underestimate or at least downplay how bad it might be for some people.  She acknowledges that it is possible, but speaks as if a taper is done properly that the chances for real problems are small and can be manageable.  She seems to think the big problem is over prescribing and people c/t'ing, not that many people who go slowly often have problems.

 

In all fairness, she does say that no one should be forced off etc.  But I wished that she said the following "Many people who have some symptoms when on, end up with debilitationg symptoms for a long time when they get off, even with a slow taper.  While that may not be the majority, it is a definite risk.  Anyone thinking of stopping should be aware of this possibility."

 

As much as I was concerned, it was much worse and much longer than I thought it would be.  And I was not prepared, either internally or externally.  I should have taken a leave of absence from work and focused on the problem.

 

Granted, she acknowleges it as much more of a problem than most.  Every doctor I spoke to said "Oh, you shouldn't have much of a problem"  even when I said that I had heard it could be difficult.

 

Pheff... I Totally agree with you. If Ashton would of wrote in her book what she REALLY witnessed wether you tapered or not people would freak. I know I would of read that part of her book and said "SCREW THAT!!! I'm out!! No way I'm going thru that craziness!!! I'm staying on the pills forever." Bhahaa!! It would scare the crap out of most people. She witnessed alot more than she talks about. She did publish alot of good data about benzo withdrawl. She just left out a few minor details. LOL

 

Rock

 

 

[[sp...]]

my personal experience is that if a taper is managed properly the side effects are tolerable and do not interfere with normal day to day functioning, and that has also been the experience of everyone I know in real life who has tapered off benzos. I don't think Ashton has any reason to pad her numbers; she was publishing her data for peer reviewed scientific journals, not trying to make people feel better. She is pretty clear that some amount of the people she worked with had much worse symptoms than others, and that a few of them were essentially unable to withdraw.

[[Wi...]]

The only thing I'd add is that Ashton's research was not really directed, for the most part, at those who are on the newer versions of benzos.  My guess is that if she were doing what she did then, now and the majority of her population was c/o'ing to valium from or tapering directly off of Ativan, K, Xanax I genuinely believe her results would have looked different.

 

And Spengler, while I agree with some of what you say about a manageable tape, i can only speak for myself, since the only one's I know other than myself who are tapering are here and not in the "real" world, yes, I can tolerate the s/x, but for me, this very much interferes with my day to day functioning despite a slow, reasonable taper.

[[KR...]]

After witnessing how various types of withdrawls go down on this site. I would be hard pressed to write a book when it comes to any of this. Its so individual. Ive seen people taper and have a hell of a time even after they gotten off the crap. And they tapered over a year and still got smacked. Other people taper and their home free. So to write a book and suggest that a reasonable taper is the way to go is BS!!! This site is PROOF of that. IF that was the case there wouldn't be all these people on this site trippin out everyday. The majority of people here seem to be tapering or coming off a taper. Most people that C/T don't last thru it. Yet some do and are just fine. But the majority of the members here are TAPERS. Judging from some of the posts Ive read it doesn't seem reasonbale or minimal at all.

 

No one knows how your withdrawl is going to unfold. So don't buy into everything you read in a book or online. It may just be a bunch of hypothetical crap that may never happen to you in the first place.

 

Rock

[[Wi...]]

KRock,

 

I'm not sure I can agree with that.  More often then not, the most extreme posts are from those who c/t'd or cut too quickly.  And while it's true that many really struggle through the taper and there are no guarantees that a slow taper will mean a soft landing, if you were to compare a few to several months out from a c/t vs a completed slow taper, my guess is that you will find, much more often, that the level of distress is significantly higher amongst the c/t population. As you can see I'm not using always or never in any of this, because as you've acknowledged it is very individual. 

 

Additionally with tapering there are a lot of variables, and as a result, as you also acknowledged, it can vary widely depending on previous c/t's, previous tapers, and a whole host of other factors. 

 

And while I do not believe there is one ideal way to get off this drug, for me, tapering slowly is the only way I can mitigate the raveges of getting off this drug as well as get off this drug successfully.  But that's just me.

[[sp...]]

The only thing I'd add is that Ashton's research was not really directed, for the most part, at those who are on the newer versions of benzos.  My guess is that if she were doing what she did then, now and the majority of her population was c/o'ing to valium from or tapering directly off of Ativan, K, Xanax I genuinely believe her results would have looked different.

 

Err. The majority of her population was crossing over from the drugs you mention among others? The Z-drugs are much newer than the benzos, and still old enough to be mentioned by name in the Ashton literature. Clonazepam has been around since the 70s (as has Xanax, etc). Ashton's lit has specific crossover schedules for every drug you mentioned, the only 'common' benzo she doesn't have one for is Phenazepam which has never been used clinically outside of Russia.

[[KR...]]

I guess what I was trying to say without being so brash in my last post is the following. Professor Ashton is not god. Nor does she know everything. She ran a very smal clinic that withdrew a few hundred people off benzos. That's it. Not thousands. Just a few Hundred. And not all of them were sucessfull.  She didn't run the Betty ford clinic. What she writes is not the holy grail. It just what she obseverved and in her opinion is the best way to go about withdrawl. The Ashton method is not always the right method as so many hype it up to be.

[[Wi...]]

The only thing I'd add is that Ashton's research was not really directed, for the most part, at those who are on the newer versions of benzos.  My guess is that if she were doing what she did then, now and the majority of her population was c/o'ing to valium from or tapering directly off of Ativan, K, Xanax I genuinely believe her results would have looked different.

 

Err. The majority of her population was crossing over from the drugs you mention among others? The Z-drugs are much newer than the benzos, and still old enough to be mentioned by name in the Ashton literature. Clonazepam has been around since the 70s (as has Xanax, etc). Ashton's lit has specific crossover schedules for every drug you mentioned, the only 'common' benzo she doesn't have one for is Phenazepam which has never been used clinically outside of Russia.

My bad.  Thanks for the correction

[[Wi...]]

I guess what I was trying to say without being so brash in my last post is the following. Professor Ashton is not god. Nor does she know everything. She ran a very smal clinic that withdrew a few hundred people off benzos. That's it. Not thousands. Just a few Hundred. And not all of them were sucessfull.  She didn't run the Betty ford clinic. What she writes is not the holy grail. It just what she obseverved and in her opinion is the best way to go about withdrawl. The Ashton method is not always the right method as so many hype it up to be.

 

I agree entirely that the Ashton method is certainly not the holy grail.  But I do have to say, with the help of a doctor who didn't know her, well you know, if it hadn't been for the Ashton manual, I'd have been up "that" creek without a paddle.  I was on 4 mg of ativan once a day.  Had I listened to that doctor I would have increased the dosage to 4 mg Ativan 2 to 3 times a day to "stabalize" and avoid interdose w/d then quickly taper down from there over the course of 2 months.

[[jj...]]

KRock,

  I will add to what you are saying.  I wrote something in a previous post about the validity of Ashton's findings.  She only worked with people who had a hard time coming off the benzos.  Some came off with few symptoms and others with a lot.  But the big factor to take into account is this:  She didn't do a randomized control trial sample of benzo users as a whole.  Yes she had a more longitudinal study which adds to the validity of her findings, but it was not a random sample. It has been said before.  The people who come off benzos with few problems are not looking for help.  They are not posting on this site, because they don't need to.

 

Ashton was the front runner on how to taper benzos safely.  But, there has not been recent research like hers since. There seems to be two ways to do this:  Cold turkey, which for a lot of people is not doable or slow taper.  Big pharma companies, and doctors are running scared after they have prescribed these drugs, because of the potential for law suits.  I cannot remember the name, but there was a couple of articles written in Dec 2011/ 2012, that talks about Ashton trying to get further funding to help improve her research.  She was not granted these funds.  There was another guy as well, who tried to get a research lab running but he was denied funds as well. 

 

Therefore, we all only know Ashton's method!  It is a good manual, but it is filled with biases, (ie, do genetics play a factor in whether someone will have a smooth taper or not?  No randomized control trail.) This is a big variable in finding errors in her research, because randomized control trials are the gold standard, to finding accurate results from a sample.

[[ha...]]

I think she did better than anyone else has done - especially when she was working on the taper system. My guess would be, that if she is as forward thinking as she seems to have been with her work, that she wouldn't say her way was the only way. She tried to help people as best she could with no information. Someone needs to take it from there.

 

[[ja...]]

Hanna that's the truth ...someone needs to take it from there.

Truth is jjbutterfly is rt. There has never been anyone else who has conducted such a study!

I think that's why everyone finds Trust in her system. The thing is Rock is rt this was done on a small amount of people .Not on a Grand scale. Idk all I know is . Anyone who's in need of Taper advise and structure I think her system works. As for myself who did a  C/Ted .. Its not for me. If I would have read her or googled her when I was in my Horror Show while I had no validation that it was  benzo w/d I was in.I may have listened .Reinstated and at this time today still been on this Trip.

I'm not saying for some that's not rt ..But as for me . I knew I had shocked my brain and Noway was I ever going to go back on. I knew this may kill me but I wouldn't have listened to A Woman who did some study and never walked this walk hold my life in her hands, That's just me. People may think I'm wrong .I know people have had much help thru her method and that's good very good. But I also think only Us who has had to fight this fight can truly say were the Experts of Benzo w/d

 

WWW..I am so glad you didn't wind up on 4mil,Adivan 2 to 3 x a day .And glad the Ashton Manual Helped you!

 

~Jenny

[[Da...]]

I'll let you know!

[[KR...]]

If anyone would ever like to get off the Ashton bandwagon and read up on a doctor/researcher that went through benzo withdrawl. You should read up on the late Dr. Reg Pert and read his story. Dr. Reg Peart was the president of the Benzodiazepine Awareness Network, and founder and national co-ordinator of VOT (Victims of Tranquillisers) and a leading researcher on tranquillisers. He did pass away (not from benzo withdrawl) so don't freak. LOL It happened later in life after he recovered. But his personal story and research trumps The Great Ashtons IMO. As Jaso19 stated. Ashton never went through this. She just documented symptoms of a small group of people who did. I'm not endorsing any doctor or their methods. It really never pertained to me. Like Jaso19 I didn't go the taper route. But IMO there is something to be said of a researcher that went through this and one that didn't.

 

                                You can read up on him at the following site:  drregpeart.org