Saturday, October 15, 2011

My Pagoclone Replacement

I was one of the participants in the final testing of pagoclone (which was in trials to determine its efficacy in the treatment of persistent development stuttering in adults) prior to its withdrawal after the trials were ended in November 2010. I was chosen for the trial because, even at the age of 54, my stuttering was severe enough to interfere with my enjoyment of life.

I was taking several different herbal supplements prior to the trial, but suspended their usage for the duration of the trial, so as not to taint the study results. None of the supplements I had been taking had ever had any effect on my stuttering. I had a SpeechEasy device which I had used for about 5 years. I stopped using it during the trial as well.

For me, the pagoclone was very effective in dramatically lessening the frequency and severity of my stuttering. In fact, the pagoclone worked better for me than the SpeechEasy had. I had some minor difficulty with the SpeechEasy, not so much with my fluency as with the sensation of hearing delayed and frequency altered sounds in my left ear while my right ear was hearing things in real time. The pagoclone, for me, was wonderful. I was told when I was selected for the study that I would continue to get the drug once the trial had ended up until the time the drug either went to market or was withdrawn. When I was informed four weeks ahead of the end of the trial that the drug was going to be withdrawn, I was distraught. It had worked so well for me. There had been noticeable improvements in my fluency and I had gotten a tremendous amount of encouragement from co-workers and peers who were excited by the noticeable improvement.

Facing the end of the pagoclone supply in a matter of weeks, I went on a desperate search for something that would deliver a comparable result. It was a depressing search. There has never been a drug to effectively treat persistent stuttering, so there was no good place to start. I remembered, though, how the researchers had been alerted to the possible efficacy of pagoclone for stuttering by an anecdotal report from one of the physicians in a previous study of pagoclone as an anxiolytic agent. The results of the study were not as promising as had been hoped in the anti-anxiety study and Indevus was on the verge of dropping the drug when the potential new use was suggested.

I started looking at herbal supplements that may have mild anxiolytic properties with being overly sedative. I was also looking for something that would have the least amount of known negative side effects. I had experimented with Kava in the past, but had not noticed any significant improvement. I was also aware of some potentially dangerous side effects with Kava. I found several mentions of different psychotropic drugs as possible alternatives, but the potential side effects were, for me, a non-starter.

After several weeks of searching, I finally settled on a regimen that I would begin the day the trial ended. I chose Valerian, a herb that has been used for some time as a sleep aid with good results and minimal side effects, though there is no data on the long term regular usage. The Valerian formulation readily available to me was a 450mg whole root capsule with the direction to take 3 capsules 30 minutes before bedtime. I decided I would take 2 capsules on the same twice a day schedule I had taken the pagoclone. I also resumed taking St. John's Wort twice a day, which I had discontinued during the study.

The results for me have been at least as good as, and quite possibly better than, the pagoclone. For me, that is saying a lot. I am now almost 11 months into the regimen, and it has worked very well. Other than some minor tiredness, I have not noticed any negative side effects. I cannot say for certain whether it is the Valerian alone or the Valerian in combination with the St. John's Wort that is responsible for what actually seems to be an improvement over the pagoclone results.

Of course, the standard disclaimers apply to this post. Nothing herein is meant to diagnose, or recommend treatment for, any condition. You should consult with your physician before starting any supplement regimen. The results mentioned above are purely anecdotal and are not meant to suggest any researched conclusions.

One final note: I am also taking Saw Palmetto Plus from the Vitamin Shoppe. It is at least theoretically possible that one or more ingredients in this supplement may be interacting with the Valerian and/or St. John's Wort.

Another possibly significant variable: I drink a 10-cup pot of black coffee every day. I have done so for almost 30 years. I use about 2 11.5oz bricks of medium roast Colombian coffee every week.