Sunday, August 05, 2012

A blog on taking meds for stuttering


A PhD student, M.,  has created a new blog:
I've created a blog where I will post information on the experiences people have with various medications they're trying for stuttering. This way we can get as many people as possible to post their experiences so that we have a nice little anecdotal data source for stutterers interested in meds. 
It is a good initiative, but based on experience I know that quite a few have written to me about their successes but then when I re-contacted them months later, they stopped taking them! In fact, I do not know a single person that contacted me that still takes them! NO-ONE!

He wants to stay anonymous. So here is my message to him:

Of course, I will do that. But if you ask me to remove your name from this post, then I think that psychotherapy (and self-help group) might actually be a better choice of treatment for you. You are running away from your handicap. All that effort spent on hiding and taking pills with uncertain outcome...

15 comments:

Jon said...

Anecdotal self-reporting. Just what we need. Let's see what we've got here...

Geodon (Ziprasidone)

"Ziprasidone is used to treat the symptoms of schizophrenia (a mental illness that causes disturbed or unusual thinking, loss of interest in life, and strong or inappropriate emotions). It is also used to treat episodes of mania (frenzied, abnormally excited or irritated mood) or mixed episodes (symptoms of mania"

That's exactly what we need to treat a neurological failure of the speech generation process. Good God! Aren't they cutting out chunks of tongue any more?

Anonymous said...

personally I'd prefer reviews about supplements...

Ora said...

(Resubmitting this comment. I submitted it previously but somehow it got lost.)

Tom - you wrote: In fact, I do not know a single person that contacted me that still takes them! NO-ONE!

I assume you're aware that Jerry Maguire has been taking drugs for stuttering for a number of years.

Tom Weidig said...

Yes, but I am just talking about those that have contacted me and that I have followed along....

We both know someone who has tried it, and he too has given up on it. All of them are not taking them any more. Too little benefit for too high costs. And the strange thing is that they all say: Medication is good but it was just not for me!! ;-)

If Jerry would lay open his patient database, I am convinced less than 20% are still taking them. And those are very likely not better adjusted than those who stopped.

Ora said...

I see that literally you were referring only to people who contacted you. It seemed like you were also implying that you knew of no one who is still taking drugs for stuttering. Thanks for the clarification.

As to Maguire's patients, no doctor would open their patient database. In fact, I think it's against the medical privacy laws in the US. Maybe you were speaking hypothetically.

But beyond a hypothetical third-party investigation of his patients, do you know whether he's had any published or unpublished reports as to his success rate with his medical (drug) therapies? I agree, it would be very interesting to know (1) how many people are helped by their treatment, and (2) how many people are sufficiently helped that it overcomes the negatives (side effects, cost, etc.). Do you have any information on this?


Do you know of any one other than Maguire who has been trying drug therapies for stuttering?

Pascal NL said...

Is this some kind of joke, those are some heavy duty medications. What kind of quack would prescribe them for stuttering? Side effects of antidepressants can be severe.

Incidentally I'm on venlafaxine and bupropion as well, but that's for autism related issues. Not the stuttering part.

Tom Weidig said...

@Ora

Are you telling me that publicizing what percentage of patients are still on medication is a breach of confidentiality?

No, I don't know, but I told him that that would be a very useful piece of research.

This simple number says a lot: If you don't get the benefits versus the costs, you will give up. It is a very simple outcome measure.

Tom Weidig said...

@Pascal: My guess is that most who are searching medicated and staying on medication show signs of clinical depressions and related disorders. Those disorders might well have been triggered by the psychosocial stress from stuttering.

Ora said...

@Tom: Your statement "if Jerry would just lay open his patient database" suggested more than simply publicizing percentages. If that's all you mean, no, I don't think that's a breach of law or confidentiality. (Though the US medical privacy laws are strong, and might in fact limit publication even of aggregated data. But probably not.)

Tom Weidig said...

What I meant was. Imagine that we could have access to his patient records (or personal experience) (which we don't), we could compute the percentage of people who do not take medications any more.

I think that there are some rules of consent such as "do you want to participate in this study". But I would surprised if it included the aggregated number of those still on medication.

of course, practical issues will emerge. maybe they did not come back, does that mean that they do not take any medication any more? if they die in the mean time, in which part do you count them? then there is incomplete data.

We could of course turn it around and ask those who still take medication to speak up or tell us that they are still on medication.

Scott said...

Tom, as a point of fact, I am still taking Citalopram and Lorazepam and have good success with them.

Anonymous said...

The only available medicine I have found that really helps my stuttering is Esgic. I was taking it for tension headaches and discovered that it untangled my tongue for a good two hours. But its withdrawal and addictive properties make it unsuitable as a treatment for stuttering for me. I'd rather stutter like a mad man then go through withdrawals.

Anonymous said...

Curetogether.com is as site which seems does exactly what you want.

People can share there experience with treatment for a disease.

You have to register, then search for stuttering.

Unfortunately, not a lot of people taken part for stuttering at the moment. Just around 20 people.

Tom Weidig said...

@Scott: Did you contact me before? I can publish your experience if you are OK with it. Just send me an email to tom dot weidig @gmail.com

Anonymous said...

Tom- you said "You are running away from your handicap. All that effort spent on hiding and taking pills with uncertain outcome..." and also suggested self-help groups and mental health issues.

I'm not the anonymous person who initiated this, but I as a reader I just wanted to say your response sounds a bit hostile and insulting. "All that effort spent on hiding and taking pills with uncertain outcome..." is an approach viewed by Gerald Maguire and many others as a valuable and much-needed new approach to treating what they believe is really a neurological condition that is only exacerbated by psychological factors. People who see potential value in this approach, or who would would like to see if it works for them, do not necessarily need therapy, or a self-help group. They are not necessarily "hiding". And how is "all that effort" any different than "all that effort" you and everyone who reads this blog devote to the subject of stuttering and how to deal with it, treat it, etc?

I'm not sure where your bias / hostility toward a pharmacological approach comes from, but it comes through loud and clear in your response. I guess, in the end, I would ask you how the approach he is using to treat stuttering has any less potential value than the approach(es) you support.