Nielk,
At the advice of one of the members of this forum, I went to the "benzowithdrawal" website and perused the various threads. Honestly, from all the addiction horror stories I have been reading here on PR, I expected the forums there to be absolutely jam-packed with people giving their nightmare accounts.
If you look, the number is relatively small . Their membership population is a tiny percentage of the number of people on this site. And our lives have been shattered by a mysterious, neuroimmune illness entirely beyond our control. There are many thousands on PR, and hundreds on "benzowithdrawals".
I didn't see any addiction stories originating in FM or ME/CFS. Many of posters on the "benzowithdrawal" website received their initial prescriptions for "generalized anxiety". Or to ameliorate the anxiety side-effects from taking SSRI anti-depressants. Additionally, I'm not certain that all such addicts are giving you the straight story; in that at least some got their benzos on the secondary market, or doctor-shopped, just looking to get high. Alas, Nielk, there are folks out there who are healthy, and just want to get high.
So I think comparing our cohort to that bunch is a little bit like apples and oranges. I'm not sure how many of these folks don't have pre-existing pyschiatric conditions. This will set anybody up for substance abuse, of any kind (drugs, alcohol, painkillers, even marijuana).
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Hi Mishmash,
I don't know which website you went to but I would suggest this one "Benzobuddies". Unfortuanately, it has many personal accounts there of people's experiences trying to safely withdraw for Benzodiazepines.
You state, "I don't know how many of these folks don't have pre-exisiting psychiatric conditions" at the benzowithdrawal websites. You know, I have no idea about that but then again, this is a defense mechanism that many say about us when reading our websites and forums. It is impossible to either prove or disprove but, there is no doubt that if one delves into this topic in order to really factually know what's going on, there is countless information out there. There are legitimate studies, patients' first hand experiences and Doctors' testimonies who specialize in this topic.
Just like we would not want people to judge ME/CFS patients by reading a few comments on one forum, I would not advocate for us doing the same to others.
I don't doubt that you had the experience you did. Especially after 16 years of heavy use. But I think you might want to consider that you are an exception. There are many alcoholics, some in my extended family, who swear they became addicts with the first taste of beer in high school. I don't doubt them. But the rest of my family is able to drink one or two beers a day with addiction.
And I have also noticed that recovered-alcoholics seem to project the dangers of potential alcoholism to every person who puts a glass of wine or beer to his or her lips. It is understandable. They were the exception, fell victim to an insidious addiction, and now expect everyone else will have the same reaction as they did.
Just to clear things up, I had 6 years of use where the last three I took 3mg a night per my prescribing Doctor's advice.
I never was and am not an "addict". I never took a "drop" more than was prescribed for me. I never had a craving for this or any other drug. I never felt "high" from a Klonopin dose or any other medications I was taking at any time. I never even felt "good" from taking Klonopin. It simply at first helped me to sleep...until it stopped being effective for my insomnia.
My difficulty was that I started having a paradox reaction to it and could not effectively or "safely' go off it even with medical help.
If you have read my story, you will see that I never advocated that no one should be taking Klonopin if it helps them nor was I trying to say that everyone who takes it will experience the same difficulty as I. What I simply said that patients should be informed and know of the possible dangers so that if and when they experience the symptoms that I was having, they will recognize that it could be from the Klonopin and that there are ways out there to go off it safely.
What you, Mishmash, and many others might not know is that I personally know of cases where patients were in the exact position I was in but, did not find the help that I did and they ended their lives because they could not deal with this any longer. I was one day away from being one of those statistics. Yes, I would have been one of those ME/CFS patients who people would have said that she committed suicide because of this horrible illness. They would not have known that this was due to the Klonopin. I know better because I survived and once I was detoxed, My urge to commit suicide died down. Others did not have that chance.
What you also don't know is the amount of mail I have been personally receiving since coming out with my story. Mail from ME/CFS patients who have been suffering like I did and are so grateful for writing about it and giving them hope that this can be overcome.
I think everybody appreciates your account, but you might be one-in-one-hundred, in terms of addictive response.
Actually, clinical studies show that 1/3 of long term Klonpin users become dependent on the drug.
Also, I think it cannot be emphasized enough, not all of us are on disability, or have spouses working to support us financially. The folks most addled about the potential dangers of benzos seem to be those who have a secure future.
I have to admit that I am stumped by this comment. Are you saying that if one is on disabilty and their spouse if supporting them, then are are more eager to warn about the potential dangers of benzos? How is that? Now I understand why people are so afraid to come out with their personal difficulties with benzos on this sight. They are afraid to be vilified by other members! Now you know why there are so few out here on this forum and you are working very hard to maintain this balance.
Actually suicidal ideation among SSRI, anti-seizure, anti-psychotic users is also very high. The package inserts for each of those contains a warning about that. Taker of those meds are advised to "taper off" lest they kill themselves. So I think doctors withholding drugs like benzodizopine medications, in serious cases, is callus and insensitive.
I'm not sure what the connection of your last statement has to do with the first part.
Yes, SSRIs come wit that warning and I think by now most people are familiar with that warning. Klonopin does not come with that warning on the label. Most Doctors out there are not familiar with that danger. When I was so ill, my Doctor contacted a top Pharmacologist in Mt Sinai Hospital, NY and he said that I could not be having suicidal thoughts from Klonopin.
I have saved all my test results and doctors findings in paper form. But I'm not sure I could qualify for disability. I need these meds to actually function at work every day. You, as one person, obviously, have no power to control drug policy, and how most docs treat patients.
Again, I'm confused about the connection here. I would hope that if you are truly disbled to work that with all your results you would qualify, although this unfortunately is not always a logical outcome. Disability claims when it comes to CFS are outrageously treated - totally unfair. I'm not sure what the connection to Klonopin is?
Of course, as 1 person, I have no power at all...to control anything. I have no doubt about that.
But it is very disconcerting when doctors assume a position of absolute risk aversion, and never give out drugs like benzodiazopines, for fear the one-in-one-hundred patient will complain about malpractice. This poisons the well for the rest of us still trying to make a go it, with a functioning life. You might as well put a skull-and-crossbones on the label in that case.
So this is what it's all about? You have a fear that Doctors won't prescribe it anymore because they are afraid of malpractice insurance? Fear no more. Doctors in the US cannot be sued for prescribing Klonopin. Many have looked into this and it cannot be done.
At the time that Cort wrote the article with my story, he posted an extensive survey for ME/CFS patients who have been or are currently taking Klonopin. I believe that Cort has the results and will be posting it shortly.
We will have a better picture then as to the real statitics of ME/CFS patients.