November 26, 2006
Dear Doctor
You may recall that more than a year ago I came to you to renew a prescription for Klonopin; a prescription that was being renewed by your PA. You gave me quite a lecture about how Klonopin (and by extension, all benzodiazepines) were “horrible drugs”, and you wanted me to taper off it under cover of an SSRI. When I left your office I was not happy and thought perhaps I should find another doctor. Yet as I have been your patient for some years, and as it is fairly easy to do simple research these days, I thought I at least owed you the courtesy of finding out why you thought these drugs were so horrible. What I found was that instead of overstating the case, you had actually understated it! For a significant number of people who take benzodiazepines, the experience becomes more than horrible, it becomes a nightmare. Fortunately that never happened to me, yet getting off them was not simple either.
I apologize for the length of this communication, but I wanted to share my entire experience, as it seems there is quite a bit of mis-information in the medical community concerning not only the dangers of benzodiazepines (which you are aware of) but the difficulty of getting off them, and of the appropriate techniques to do so. Perhaps my experience will benefit some other patient that comes through your practice. I’ve put this document as a .pdf on the enclosed CD, so you could easily follow the internet links.
It appears that I am one of a minority of people that are overly sensitive to this and other psychotropic drugs. While I am part of a minority, there are still a large number of people in this minority. For example, there is a large and active Yahoo group that consists of people who are trying, often with great difficulty, to get off benzodiazepines. There are currently almost 3,000 members with an average of 1500 posts per month. You can find it at http://health.groups.yahoo.com/group/benzo/.
I’d like to start by giving my psychological history (why I was on this drug in the first place). In 1997 my parents, based on a lie told by my sister, decided they didn’t want to have anything further to do with me. This filled me with anger and depression. But its worst effect was that I began to suffer panic attacks in crowded places, especially on subways. I also developed mild agoraphobia. Eventually I sought help from a psychologist in the neighborhood. He was helpful in getting me to understand the roots of my problems, which included a very abusive childhood, and though I made some progress with the panic disorder, it didn’t go away.
In early 2001, I decided to see if a pharmaceutical approach would be helpful, and I came to your office and saw Dr. Meyer. He prescribed Buspar. Although it gave me electrical snapping sensations in my head, it didn’t seem to have any beneficial effect. I decided to discontinue it, which I did in mid-November. Nowhere, on the label or elsewhere, then or now, did I see that Buspar needed to be “tapered”.
Thanksgiving Day 2001, I was hit with a massive wave of depression, unlike any I had ever experienced (remember, my main problem was panic, not depression). The following morning when I awakened, I felt suicidal and saw guns floating in front of me (I was a target shooter at the time). My wife assisted me in collecting my guns and driving them to the local precinct, where I vouchered them as being unsafe to remain in my possession. (This cost me a few thousand dollars, as once you voucher your guns it is almost impossible to get them back).
The following week I had more difficulty, as I had terrible panic attacks on the subway, day after day, even when I left work early and rode on trains that were nearly empty. By the end of the week I resorted to taking a bus from Chelsea to Park Slope, which took nearly two hours. I didn’t know what the term “rebound anxiety” meant at the time, but clearly I was experiencing it from my discontinuance of Buspar. (When I told this story to Dr. Meyer later he said he had never heard anything like it). I knew I had to do something so this time I tracked down a local psychiatrist. He immediately prescribed 20mg pf Prozac and 1.5 mg of Klonopin, which quelled the major panic. I saw him for a couple of years and he too was helpful, to the point I felt much better, although not completely cured. Meanwhile, I had cut the Klonopin to 1mg per day and later to 0.5mg per day.
At some point, maybe in 2003 or 2004, he lost his license to practice medicine. I decided to use that opportunity to see if I could take a permanent leave from the psychiatric and pharmaceutical profession. By now I knew something about tapering off drugs, so I decided to start with the Prozac, feeling instinctively that would be easier. Which it was. The appearance of some strange sexual effects (the reverse of what I had felt getting on Prozac) indicated that I was done with Prozac. I then started with the Klonopin. I cut down from 1mg to 0.5mg reasonably slowly, then cut the 0.5mg pill in half, and so on. It all appeared to be quite simple.
It was probably three months later when I started feeling strange pains behind one of my eyes. At the same time I developed a pain on the right side of my head, just above my ear. I came in and saw your PA (I’m sorry, I forget his name). I specifically wondered about the absence of Klonopin, but he felt too much time had passed for it to be a factor. He referred me to a neurologist.
The neurologist also listened to my Klonopin story, and discounted it. He said there was nothing wrong with my brain but noticed extreme tightness in all my muscles. He showed me a diagram where three groups of muscles come together in that part of the head, and suggested that was the cause, with the cure being hot water packs. That did indeed bring some relief.
However I continued to develop disturbing symptoms, the worst of which was a feeling I can only describe as being “wired”. In spite of having been told by two doctors that Klonopin withdrawal could not be the cause of any of this, I went to see my now-defrocked psychiatrist. He stated he had occasionally heard of symptoms occurring up to six months after discontinuance, and that the simple test would just be to go home and take some Klonopin and see if my symptoms were relieved. Sure enough they were. In a few days I reduced my dose to 0.5mg and maintained that well into 2005. Given the problems I had in getting off the first time around, I was in no hurry to try again, since the dose seemed to be so small. Your PA prescribed it to me as a 1.5mg per day dose that I stretched out to ninety days. But unbeknownst to me, it was having an effect. A year ago when I came to see you for more Klonopin I also came complaining about minor pain all over my lower back even extending into the kidney area on both sides. You didn’t find anything. I later found out I was already beginning to experience “tolerance withdrawal”, where the body starts asking for more of the drug. So your intervention was most timely.
When I came home that day and started doing research on benzos, I found out a number of things that were the opposite of what I had been told. Namely:
· Most people can easily get off benzos, but a number cannot. The length of the treatment, the size of the dose, and the number of benzos prescribed all have a bearing on this, but there are still people (like myself) who have problems getting off even low doses.
· Rapid cessation of benzos can seriously harm you by causing seizures;
· It is possible when tapering off benzos to experience everything that benzos are used to treat. The most common symptoms are muscle problems, but everything from seizures to rebound anxiety is possible. In my case, I am still experiencing tinnitus, even though I never had it until two-thirds of the way through my withdrawal. And I still have lower back stiffness and soreness, even though I have been benzo-free for six months. Fortunately I had no significant psychological effects
· Valium, not Klonopin, has the longest half-life of any benzo, so it can be used in helping with tapering off.
I found that if you are one of those people who has difficulty in getting off benzos, there are only two ways to effectively do it. The first way, and the most popular way, is to “cross over” from whatever benzo your are on to a slightly higher equivalent dose of Valium, and taper off the Valium. Valium is cheap, comes in a variety of doses, and has a long half-life to smooth out the process. It also is fairly easy to manage. That seems to be a big issue as from my experience as a member of the Yahoo group there are people who are trying to get off benzos who have difficulty functioning at a high level.
I chose not to use the Valium taper method. After having the trouble I had with psychotropic drugs, I had no wish to start on another one. And I was afraid the greater sedating effect of Valium over Klonopin would be an issue.
I chose instead to try the water titration method. The disadvantages of this method to some is that it involves the purchase of some equipment; beakers, graduated cylinders, a small mixer, etc., plus the ability to manage the process. It appears many long-term benzo users have no money and limited ability left to manage the process. You did say these were horrible drugs, right? Anyway water titration worked for me. It took some five months, and I went through a variety of symptoms that were not pleasant but that were manageable. Being off, I feel better all around. Some of the good people that run the Yahoo group have prepared a spreadsheet to help with titration, which I have put on the attached CD.
Much of the help on getting off benzos seems to come out of the UK these days; specifically from Dr. Ashton and Dr. Peart.
There are several sites where you can get the Ashton Manual, and further information. Here’s a large one:
New England Journal of Medicine on benzos and tinnitus: http://www.benzo.org.uk/busto.htm
The fact that so much has happened in the field in the UK makes me wonder if there is a genetic component in benzo addiction, since I am Anglo-Saxon as well. That will be for the scientists one day.
I appreciate your help on getting off this drug, and I trust the above will be of interest. Please contact me if you have any questions.
Regards,
Denton
denton@speakeasy.net www.dentontaylor.com