Pagoclone
This weekend, CNN posted on their web site a video about Dr. Gerald Maguire's research and the benefit of Pagoclone to stutterers.
It would seem that in a stutterer's brain too much dopamine goes to the striatum area. And so by controlling dopamine levels, Pagoclone can curb stuttering.
But it was only effective in just over half of the patients tested. Why?
The stutterer in the video, who found Pagoclone helpful, had historically worked hard to hide his stutter. He also mentioned that as a result of Pagoclone, he experienced a "free flow of thought" he had not had before.
So is it possible that the increased dopamine comes from the anticipatory thoughts many stutterers have in an effort to avoid stuttering?
If so, then Pagoclone would be effective for stutterers who scan ahead and plot ways to avoid stuttering (and send too much dopamine to their striatum), but would provide little or no benefit for stutterers who just bump on through the words without worrying about the words ahead of time (and don't send additional amounts of dopamine to their striatum).
It might also explain why Pagoclone only curbs stuttering rather than stopping it altogether. Pagoclone eliminates the additional disfluencies that occur from actively trying not to stutter, but leaves the core stuttering alone.
But this is all just a guess. I'm curious, though, as to whether there was a correlation between the effectiveness of Pagoclone and the level to which a person had previously anticipated and tried to hide their stutter.
It would seem that in a stutterer's brain too much dopamine goes to the striatum area. And so by controlling dopamine levels, Pagoclone can curb stuttering.
But it was only effective in just over half of the patients tested. Why?
The stutterer in the video, who found Pagoclone helpful, had historically worked hard to hide his stutter. He also mentioned that as a result of Pagoclone, he experienced a "free flow of thought" he had not had before.
So is it possible that the increased dopamine comes from the anticipatory thoughts many stutterers have in an effort to avoid stuttering?
If so, then Pagoclone would be effective for stutterers who scan ahead and plot ways to avoid stuttering (and send too much dopamine to their striatum), but would provide little or no benefit for stutterers who just bump on through the words without worrying about the words ahead of time (and don't send additional amounts of dopamine to their striatum).
It might also explain why Pagoclone only curbs stuttering rather than stopping it altogether. Pagoclone eliminates the additional disfluencies that occur from actively trying not to stutter, but leaves the core stuttering alone.
But this is all just a guess. I'm curious, though, as to whether there was a correlation between the effectiveness of Pagoclone and the level to which a person had previously anticipated and tried to hide their stutter.
posted by Closet Stutterer at 12:46 PM
81 Comments:
anticipatory thoughts--or maybe, just the inability to start sentences versus tripping up mid-word?
i know for me, it's the inability to start sentences, because i'm thinking ahead and worrying about the first word.
Thank you for your comment.
I also have trouble starting sentences, particularly if it starts with a feared word. To me, the thinking ahead and worrying you mention could be considered "anticipatory thoughts."
I wish I could erase my "thinking ahead and worrying." I might still stutter, but I'm fairly certain it would be less noticeable.
Thank you again,
Sophie
well,I'm one of those, and i will like to participate on one of the trials.
You can imagine how hard is to hear a 4 years old child speak better than you.
it really SUCKS!
Yes, it is difficult. My son is four, and he speaks much more fluidly than I do.
I try to remind myself that communication is the important thing, not smoothness. But sometimes it's hard not to let all the choppiness get you down.
Hang in there.
Sophie
Hi Sophie
The marketing of Pagoclone worries me. As I understand it, Pagoclone is like valium and we all know how insidious the effects of that drug were - good in its place but would you want your children on it for more than a day?
Also, as I understand it from articles on the BSA website, www.stammering.org, pagoclone is about half as effective as placebo. Yes, HALF AS EFFECTIVE AS PLACEBO!!
Pagoclone is a cure looking for a disease and stammering can''t be cured because it is a behaviour not a disease. But, happily, we can change our behaviours without drugs and seen in this light, drugs become a blind alley.
Best wishes
Peter
Hi Peter,
I understand your concern.
I'm not sure we know enough about stuttering yet, though, to label it purely a behavior.
Stuttering certainly has behavioral components --- I scan ahead, avoid certain words, substitute other words, stall, etc. But to me these behaviors are symptoms of trying not to stutter.
I suppose the bumpy speech itself could be called a behavior, but I'm guessing that too is, or was, a symptom of something deeper.
But like you, I'm very hesitant to turn to drugs for help.
All the best,
Sophie
Whether its a chemical problem caused by genes or a chemical problem cause by the way of thinking over the years... regardless, I"m convinced it IS indeed a brain chemical issue, and one day will be cured with a pill... is this medication getting close? hope so
It would be nice if there was one pill that made my stutter go poof without any side effects.
I'm not convinced, though, that a pill could cure my stutter. Yes, a pill might some day be able to fix whatever neurological flaw disrupted the flow of my speech initially.
Personally, though, I think the emotional baggage and the way I think about my speech runs way too deep for a pill to fix.
But that's just me. For someone who doesn't feel as negatively toward their own speech as I do toward mine, a pill might be the answer.
I guess time will tell.
Thank you for posting.
Sophie
I see your point, and have perhaps thought the same...but over the years it becomes more clear, at least to me and in my opinion....that like a "broken bridge", once repaired and put back together, the stuttering can and will be cured from within the brain....I'm confident about this. And thus, once this happens, over time, one will not have a reason to feel negative about their speech and the axiety will subside as well. Any update on when Pagoclone will become available?
Thank you for writing.
Based on my experience, I tend to think the opposite. I believe the anticipatory anxiety I have over whether I'll stutter or not is sufficient, all by itself, to disrupt the flow of my speech.
I'm guessing that even if the neurological glitch that caused me to stutter in the first place were repaired, I'd still continue to stutter until I stopped anticipating how the words will come out. Or put another way, I think the anxiety needs to be dealt with before any "cure" can be effective.
But that's only based on my own experiences.
I'm afraid I don't know when Pagoclone will be available.
Thank you again,
Sophie
I am 30 and loosing my f- ing mind. I am on three drugs now all tripping me out one way or another. Valium, Zoloft, and lamictal. Try getting off any off these drugs and your speech turn to s**t. if I d have a wife and kid I would have already killed myself.I'll try anything!!!!!!!!
I think many stutterers have felt desperate at some point, or many points.
I've found it's helpful to talk to people who understand. You might consider trying to find a speech-language pathologist near you who specializes in stuttering, or joining one of the online stuttering support groups, or depending on where you live, attending a National Stuttering Association chapter meeting (other countries have similar organizations, I believe).
Just some thoughts.
Hang in there. The most important thing is to know you're not alone.
Best wishes,
Sophie
As a neuroscience student who stutters, I've been particularly interested in pagaclone for some time. As mentioned before, it's a GABA partial-agonist; more similar to ambien and lunesta than valium. Not to be too pedantic, but I feel like Peter is making a false dichotomy between behavior and disease; stuttering is not a disease, in that there is no single genetic or viral cause. It would more accurately be called a disorder, in that, presently, our understanding of stuttering is as a set of behavioral and neurological symptoms.
As with any pharmacotherapy, pagaclone is like using a sledgehammer to put in a nail; it effects every area of the brain with GABA receptors, including, presumably, the ones you want to target. I have no idea what effect pagoclone has on striatal dopamine neurons, but the dopamine-imbalance theory of stuttering, based on neural imaging data, is still very speculative. In my own experience taking drugs, almost anything, from THC to cocaine, reduces my stutter at first, but later increases it when drug withdrawal effects set in. This leads me to believe that any stuttering reduction effects are due to a reduction in general anxiety, rather than any specific regional imbalances. I think, however, that the issue is largely semantic: at the risk of stating the obvious, all behavior is chemical in nature, so distinguishing between a behavioral issue and a neurological one is not often helpful.
I apologize if this comes across as overly wordly, technical, or negative. I'm very excited about this drug, and plan to try it as soon as possible. As with any pharmacotherapy, it will be most useful when combined with behavioral therapy.
On the other hand, the FDA has been getting much more skittish lately about approving new drugs; I imagine distribution to the general population is still a couple years down the road.
-- Aaron
Hi Aaron,
Thank you for sharing your knowledge and views. No apology necessary.
For what it's worth, I'm beginning to believe that a lot of my noticeable stuttering symptoms are linked to anxiety. So anything that could reduce the anxiety will likely reduce the noticeable stuttering too.
Thank you again!
Sophie
Hi, folks. I came upon this blog while surfing and wondered if anyone has comments --pro/con--about the SpeechEasy device. I'm in the midst of a battle with insurance companies, governmental agencies, and doctors; the stumbling block is whether or not it is really effective long-term.
Hi Joseph,
I'm not sure anyone has a definitive answer on this yet, but here are a couple of articles:
From the Stuttering Foundation's web site:
http://www.stutteringhelp.org/default.aspx?tabindex=575&tabid=588
The National Stuttering Association's position:
http://www.nsastutter.org/material/index.php?matid=328
As with virtually everything stuttering related, effectiveness depends on the stutterer. If a technique, device, or treatment helps you long-term then for you it's effective long-term. Everyone's different.
Good luck with your battle.
Best wishes,
Sophie
joesph.I have the speecheasy and it really has done nothing for me.I do hear my voice in my ear at the same time im talking but the anxiety is still there.When you cant get out a word the only thing you hear is you not getting the word out. It also cost an arm and a leg
I tried the speech easy device. It worked at first but the longer I used it the less effectively it worked until it stopped working altogether. I tend to think many of these therapies are more successful for less severe stutterers. My stuttering is pretty severe and has been recalcitrant to therapy. I am curious to try pagoclone though, might be useful for when I have to give presentations at work.
I been using speech easy for over two month now. Well, I obtained two month ago, and after three weeks never used it again. Luckily, I didn't pay for it or I would have lost my mind. It's a rip off. It might work for the first few days but then it's affects rapidly dwindles. Also, you are always hearing people in your ear, which is annoying. I'm sick of stuttering sometimes I just want to put an end to my life because it's painful when I can't express myself verbally, the way I want.
I've felt the same way as you do about stuttering. It is painful to not be able to express yourself verbally the way you want.
I've found, though, that by changing what I want, I can reduce the pain.
I used to want to speak smoothly and effortlessly all the time --- no stumbling over any words. But I've since settled for being able to communicate my thoughts effectively. And a stutter here and there, or even everywhere sometimes, doesn't stop me from doing that.
When your stutter causes you pain, it's usually because your expectations are at one end of the spectrum, and your speech is at the other end. Living peacefully with stuttering is all about finding a place in the middle where one's expectations and one's speech can meet.
I don't know if this helps at all. At the very least, know you're not alone.
Best wishes,
Sophie
Ive stuttered since I was 7 but have always been extremely outgoing. I never worry about what I am going to say or really even have to think about my words, my stutter just comes out at random. I have been to speech therapy since I was 7 years old- I am now 21. I would try this drug regardless of the end result. It is also nice to know there are others out there who stutter- I have never met someone else who stutters so I found some comfort in reading these comments :)
Frusterating to not have the ability to say what you want to say the way you want to say it, huh?
-Jen
I posted the comment above but wanted to add a little after reading everyone elses comments-
Stuttering is most certainly not simply a behavior. I am a psychology major, almost done with school. I want to point out that if it were simply a behavior we could learn to change it. Behaviors can be modified. Since behaviors can be modified and we can learn to change them, does anyone really think that'd we'd all still be stuttering?? I doubt it! Nobody wants to stutter. Think about how your body feels when you stutter. I can only speak for myself obviously but I know my entire throat and abdomin tighten up making it hard to breath and thus making it even harder for the word to come out. I highly doubt if stuttering was just a behavior that I would still be doing it! Just wanted to point that out :)
I also wanted to mention the speak easy device.
It is trash. My speech therapist tried this with me about 5 years ago (yes way before it was ever on Oprah) and all it did was mess me up even more. Basically, you hear yourself but its a delayed response. I have no idea how anyone thought this would help with stuttering when stuttering is a disorder where your muscles involuntarily contract. I just want to tell anyone who is thinking of trying this device do not purchase it. If you really are curious, ask your speech therapist about it. Many of them have access to this for free and you can try it out and see what you think.
I'm done rambeling :)
have a good morning everyone!
-Jen
Hi Jen,
Thank you for sharing your thoughts and experiences.
I think that's fabulous that you never worry about what you're going to say.
I'm pleased you found comfort reading other people's comments. You might consider joining one of the online stuttering support groups out there (Yahoo! has several). You'll soon see you're far from alone in this.
Best wishes,
Sophie
I can tell you all with great confidence that the mcguire program for people who stutter is the only way to achieve fluency. The program involves learning a breathing technique, futhermore the success rate is extremely high. My stutter is in no way cured but i have been taught how to manage it through this program and it completely changed my life.
While a miracle cure may be on its way, i suggest in the time being that everyone dealing with stutters do this internationally renowned program as it will change your life
Dear Anonymous,
Thank you for sharing your experience.
I know of several people who have had great success with the McGuire Program. I also know of many people who have successfully managed their stutters without the help of the McGuire Program.
Like all stuttering treatments out there, what helps one stutterer may or may not help another stutterer. We each have to keep searching until we find the approach that works best for us.
It sounds like you've found what works best for you, and that's fantastic.
Thank you again.
Best wishes,
Sophie
I am 47, married with 2 boys who thank god dont stutter.
Been through many programs with little improvement. HCRI was the best 30 years ago. Went in barely able to speak and came out a functioning human.
My stuttering is not that bad. I can introduce myself, talk on the phone. My speech is choppy but I get out what I want. Anyway, have been kind of depressed lately and went to my doctor who put me on Welbuterin 300 mg once a day. My speech had gone to sh$t. I can barley talk. I am going to call him and get off this med.
There must be something to the dopamine thing.
Gregg,
Thank you for writing.
I hope your doctor can sort out the side effects. I wish I had something more useful to say.
Best wishes,
Sophie
Gregg, I too have been taking wellbutrin and have noticed a negative impact on my speech....though I never put the two together until I read your post.
I am a 30 year old, husband and father of one....luckily it looks like this is passed on by the mother studies have shown.
Sophie, I commend you on this blog....I too struggle with anticipation of words and feel this is a major problem. Stay positive!
"Never be bullied into silence. Never allow yourself to be made a victim. Accept no one's definition of your life; define yourself." - Harvey Fierstein
Thanks,
Scott
Scott,
Thank you for your kind words.
That's a fantastic quote!
All the best,
Sophie
Hi Sophie,
This is extremely random, but I think I spoke with you on a panel once at a college called CWPost on Long Island. That could have been a different Sophie, but your comments sound very much like how the Sophie on the panel talked.
I've been stuttering all of my life and everything you explain about your stuttering is exactly like mine! I loved reading your comments. I get so frustrated with my stuttering and I hate it so much, but most of my close friends would never even know. I am extremely good at hiding it (changing my words around), and I avoid situations I feel I could stutter in. I am a master at hiding it. I am 21 years old and I'm a junior in college.
I love reading what you post!
From,
Hopie
ps. Sophie is my favorite name EVER, and if I ever have a daughter I've always wanted to name her Sophie, but I have such a hard time saying it! haha.
Hi Hopie,
I think it was me on that panel. *:o)
I'm so pleased you like my comments. It sounds as though our struggles are very similar.
Oh, and I have a hard time saying Sophie, too.
Thank you for writing!
Sophie
I am pretty severe stutterer and have been since I was a child. (Severe blocks)I'm now 32. I have the speecheasy and find its works ok if I can get my speech going. That is where it's major downside is that like me and my severe blocks, it doesn't help. Once I get the ball rolling I can speak ok.
I am looking into speaking to my doctor about trying some of the drugs and am wondering something. Speak therapy helps some but my behavior is so set in stone that it is very resistant to therapy. Kind of like trying to climb Mount Everest in first day of learning how to mountain climb. The techniques we learn in therapy are so overwhelmed by out stuttering habits that its harder to inset the new behavior into your thinking.
I am wondering if drugs like these although may not cure your stuttering, may "chop mount Everest in half" and make techniques learned in therapy easier to grasp effectively in a shorter time frame.
Just a thought.
Hi Chris,
I think that's a very good thought. I wish I had the answer.
It couldn't hurt to give it a try.
Thank you for sharing your thoughts, and good luck.
Best wishes,
Sophie
In a month, I am schedule to start in the study. I can hardly wait to start. I have managed to control stuttering. I do agee with the idea of anticipatory thoughts triger stuttering.
Good luck! I hope everything goes the way you want it to.
Best wishes,
Sophie
DC
Who did you contact to be included in the study?
What are some of the current drugs that are being used?
Hi Chris,
I checked with the National Stuttering Association, and I'm told the only drug being used right now is Pagaclone.
There's information about the clinical trials here:
http://www.stutteringstudy.com
Hope that helps.
Best wishes,
Sophie
I go in for the Pag evaluation Thursday. When I was a kid, the doc gave me Haliperidol. Helped my stutter but I slept all day.
The only problem with drugs is the dependency. You lose insurance or get bad side effects and you go back to your old speech pattern.
I have decent control over my speech, during stress is when I get bad. Sometimes we have to accept who we are and the way we speak. If others cant deal with it, well thats their problem.
Hi Gregg,
Thank you for sharing your insight. For what it's worth, I like your advice.
Good luck with the evaluation.
Sophie
I went for my first evaluation for Pag. In the interview they asked if I was on any medication. I told them I am taking some OTC herbal supplements that contain St. Johns Wort and Ginko Biloba. They said I cant participate in the study unless I stop taking them. Need to be off for 4 weeks.
I plan on not taking them and I have to go back in 1 month. Anyone who is thinking about this study, you have to be clean and not on any meds for heart or cholesterol either,.
Thank you for the info and update, Gregg!
Good luck next month.
Sophie
just to add a comment. The nurse who was interviewing me said one of the doctors at this clinic was a stutterer and was taking the pagoclone. She said if he didnt tell them he stuttered, they would have never known.
I have always thought stuttering was caused by something in the brain.
Throughout my life I have taken different meds and some other drugs,alcohol, recreationally.
Each one had a different effect on my speech pattern. If stuttering was not in the brain, these drugs would have no affect either way.
I would like to hear from someone on the drug. What are the side effects if any are you experiencing?
I have an opportunity to participate in a nine month study of Pagoclone. My concern is there are three of us in this particular trial. Two of us will be given varying doses of Pagoclone; the third will be given a placebo. I'm debating if it's worth a 1 in 3 chance of receiving the placebo and giving up Valium, which provides a reasonable amount of relief when speaking to a group.
Greg
Where are you located at, if you dont mind me asking.
from what I read on the disclosure forms, even if you get the placebo it may only be for a short period of time. You go back for video tests of your fluency and they secretly change doses etc to see what effects the drug or placebo has. Like they say, its a double blind study. They want to see what happens good or bad with different doses. You are a test subject.
I like the calming effects of the supplements I take.
Chris, near the Houston, TX area.
God must have not wanted to to be in the Pagoclone Trial.
He erased my phone number from their files and kicked back the email they sent me as for my phone number and other information.
I know I filled both of them in since it was required on the form.
Things that make you go Hmmmmmm???
Chris,
Don't give up. I would imagine it's more likely a human/computer error.
Have you tried calling them?
1-866-519-4411
All the best,
Sophie
Yes, I have contacted them. Thats where I found out why they never called me back. I agree, human/computer error more like it.
As of now, they have all the people they need. They needed 350 subjects nationwide.
That's a bummer.
Let's just assume that had you made it into the trial, you'd have been given the placebo.
Sophie
Has anyone heard how the pagaclone trials have been going? Just curious.
Chris
i never made the study. went in for the interview, i told them i was taking some otc herbal supplements and they told me to get off them for 4 weeks then come back. the guy said no problem getting in the program. when i came back after 4 weeks, clean, they said there was no more spots for me. thanks but no thanks.
Hello everyone,
First of all I just want to give my thoughts on stuttering. I am 28 years old, and have been suttering since I was really young. I just want to get straight to the point, so let me tell you that stuttering is indeed complex, but in the same time , most of the blocking is definitely learned behaviors. Remember when you were young, did you notice your stuttering as much? I know I didn't. Did you put so much focus on it back then? I believe the stuttering hasn't gotten worse, but everything associated with it has. The anxiety, the worrying, the twitches, the avoidance etc. Some kids outgrow stuttering and others don't, and early intervention probably helps a lot. In my case, I didn't get any help for my stuttering when I was young, I remember only when my dad would tell me '' why do you talk like this ''. My dad didn't know better and still doesn't believe that I have a problem, like most people don't understand , and its all the little things accumulated over the years that make our stuttering worse. Sometimes I focus so much on it that I basically can't even get a word out , its just constant blocking. But for some reason, I was a best man at my friends wedding, and I had to give a speech in front of 140 people, and at first I was so nervous and didn't even imagine that I would go through with it. Two days before the wedding I decided that I would feel like total shit if I didn't give a speech and I told myself that I can do this, so I prepared my speech, and when the time came, I gave my speech and I swear I surprised even myself. I didn't block once, and everything I wanted to say came out, and even my friends who know I stutter told me that I didn't block once. And for the next few days my speech was perfect, my confidence was so high and I was on top of the world... but then I got back to reality and mental blocks took over again. That's why I am convinced that stuttering is greatly affected by many factors, and confidence is what we need to build.
This is my personal belief, and nothing is more convincing than when you actually live the experience.
As for Pagoclone, I am currently in the trials. I have 2 months left before I go on the open label phase, where they will give me the real medication at a maximum dose, until it comes out on the market. The results are looking really good for those who are not on the placebo. I am probably on the placebo as I haven't noticed anything at all even with side effects , although there hasn't been any noticible side effects even for those on the real med. I spoke to so many people that are in the same trials and some have gotten amazing results, to a point that they believe life will be much better from now on. I am really excited to try the real meds, and will keep you updated when I do in December 2009. I don't expect pagoclone to cure my stuttering, but to help out with all the learned stuttering behaviors that I have acquired over the years. Then it will definitely build my confidence. Imagine being able to talk without all the scanning ahead of time and the avoidance, and all the rest.
Good luck to everyone, don't lose hope , work on your confidence. The future looks brighter than ever for stuttering, maybe pagoclone will be the first of other effective treatments in the future.
Hi Antoine,
Thank you for sharing your thoughts.
I agree. At the risk of repeating what you've said, for me, there are two aspects of my stutter that work together to produce my unique speech pattern:
1. the stutter itself; and
2. how I react to or deal with the stutter.
And from my own experience, I do believe number 2 is largely learned, and can be largely unlearned or at least modified.
Good luck with your Pagoclone adventure.
Best wishes,
Sophie
Thanks Sophie, btw this the same user as Antoine, for some reason I was logged in my brothers account, but I just wanted to add that I heard that they might do another trial phase after this one before they bring it out on the market, so I will let you know if I get any information so you can sign up, it all depends on what the FDA want to do.
take care
Robert
Thanks, Robert.
Sophie
I am not targeting this comment on anything in particular, but just want to share my experience with you all. First, I thank Sophie for initiating this excellent blog.
I am 38 years old, father of 3 kids. I have been stuttering ever since I remember and had never used any medication, device or therapy so far. This is the first time I am even writing to a forum. I am a graduated engineer, a university lecturer, a business owner and an inventor. But, I still stammer.
Despite all my achievements above, I am worried day and night on my problem. The more you achieve, the more you start worrying as sometimes you cannot express what you want. It might be the will power I have in me and the confidence that my parents have given me when I was a kid ‘you can do it’, that always keep me going. But, still this bothers me a lot as sometimes I stammer so bad. I feel this is the ONLY problem that resists me from progressing in my life.
As many of you have commented, I too try various ‘tricks’ to avoid my stammering. I prepare my presentation slides in such a way that it gives only few information at a time. That helps a lot. I avoid talking when I am physically tired. I avoid talking in a loud background. I try to control the flow of my thoughts (sometimes successful, mostly cannot). But, still I stutter so bad sometimes to the level that the listener shows no more interest to listen to my pathetic sound. That hurts, but I recover very fast. The last question I want somebody to ask from me is my Name or my Company's Name, as I cannot find any alternative words to phrase my reply for those two questions :)
One comment worth noting. As Sophie has highlighted, “the anticipatory thoughts in an effort to avoid stuttering” plays a huge role in my case too. The next prominent contributor to stuttering from my experience is the mental pressure (I don’t know the medical term, but what I mean is 'not having peace of mind'). I found this correlation very recently. When I have domestic problems which is common in a family life I stutter a lot until it is completely solved. As somebody has commented, a little bit of wine sometimes helps, but when you consume little more than that it’s the opposite :) Hence, I would really love to hear if there is a pill to support.
Sorry for the long wirteup.
-Jim
Hi Jim,
Thank you for sharing your experiences.
I can relate so completely to everything you say. I'm not aware of such a pill, but I'm certainly not "up" on all the medications out there.
One thing I'd like to mention, though, is that as I've started to be more open about my speaking struggles with friends, I've noticed a common reaction, which is "Oh, that's just like such-and-such that I'm dealing with."
I really believe that everyone struggles with some aspect of themselves that they wish were different or would just go away. It's just that many of these other things people are dealing with aren't that obvious or can be hidden. We have the "fortune" of having our thing be something that actually becomes more visible the more we try to hide it.
I read somewhere (maybe someone posted it here) that peace comes when our expectations match reality. It's all about accepting ourselves as imperfect and forgiving ourselves for not coming across as perfectly as we'd like.
It's very difficult to do, particularly when we want to make a good impression. But as all your very impressive achievements show, how we speak is such a small part of who we are.
Congratulations on not letting your speech hinder you. I don't know if any of the above helps, but please know you're not alone, and thank you again for writing.
All the best,
Sophie
Hi Everybody,
I found this great article on web, discussing some techniques to follow. http://www.stutteringrecovery.com/recovery.html. I am sure you will find this very useful.
Good luck,
Jim
Hi Jim,
Thank you for posting this.
Now, if I could just let my stutter be what it is, all the time ...
Sophie
Thank you all for your comments. They make me feel that I am not alone.My stutter really affects me badly and I constantly feel bad about myself and have low self esteem because of that. Sometimes I feel that I just wanna die. I am a physician by profession and it really gets to me when people take me as if I don't know anything at all. I know it shouldn't affect me so much but most workmates do not listen to me at all, even my suggestions/comments/help in meetings are not just ignored. I guess the worst part is feeling useless when you know in your heart that you have so much to offer but just can;t express it.
Thanks for much for this blog. It helps a lot and i hope that the pagoclone trials go well for all of us. It won't hurt to try new therapies.
Dear Anonymous,
It is a shame your workmates aren't more attentive to your ideas and suggestions. It's their loss really, but I know that doesn't help improve the situation.
I can completely relate to your frustration, and you are definitely not alone. I only wish I had some magic solution to offer.
One thing I try to remind myself when other people interrupt me or cut me off when I get stuck on a word is that their talking over me has much less to do with how much they value my opinion as it has to do with how much they want to get their point across. When I look at it that way, I find it's easier to keep persevering instead of giving up.
What you have to say is important. Try not to let a bunch of people who jump at the first chance to express themselves stop you from sharing the valuable ideas you have to offer.
Thank you for writing, and I hope your colleagues learn to be a bit more patient.
Best wishes,
Sophie
I highly entrust the use of xanax and valium which you can buy on WWW.MEDSHEAVEN.COM even without prescription.
I highly recommend Ambien if you need help falling asleep Ambien is the best, I bought it from WWW.MEDSHEAVEN.COM no prescription required. MF
Hmmmm ... I see a pattern here.
Not sure what either of these comments have to do with stuttering. Maybe the medsheaven.com fans are lost?
S
Wowzers! This blog is giving life to me. I feel like I've come home to a group of brothers and sisters who share in my struggle. Stuttering is complex. Not to sound cocky but in my life I have mastered many things, sports, writing, art, various things. Most of it through hard work and practice. The one thing I cannot master no matter how hard I try or practice is stuttering. Mastering this sport has evaded me for as long as I can remember. Now let me be up front, stuttering has not beat me into submission although there are days I cry out to God and say why???? I have good days like all of you and bad. I'm always tempted to let the bad outweigh the good because it's painful sometimes. Sometimes my biggest frustration is that I didn't speak when I wanted to. If I'm in a meeting at work and something is really burning on my heart but I stay silent out of fear this too can make me feel like a loser.
Despite all of this I refuse to give up. I'm 34 years old and I'm actually a pastor. How's that for confronting your fears. I'm very outgoing and I preach often. I pastor in one of the largest churches in the country and speak to thousands of people all the time. Here's the kicker. I know what I'm good at and what I'm not and it's strange to manage. When it comes to preaching I can go 30-40 minutes not a single block. This happens almost every time. Only
on occasion do I ever block while holding a mic, but usually i'm able to anticipate it and switch words. Preaching is awesome, it's the one place I can freely express my thoughts. And I do it well. I always write my sermons out but rarely even use my notes. It's truly a gift from God. But here is the thing, I can come down from the pulpit after talking for 30-40 minute not blocks and start stuttering when people up to me after the sermon. Not always but often. I usually hide it but I feel the internal effects of it ( anticipating tough words, word substitution, airflow issues, brain feeling anxious). I'm also good one on one. But when taking to a group of 6-12 in a room, experiences are highly
variable. Sometimes it's stutter central, sometimes it's easy street. Usually I struggle in that context. So you can imagine the dichotomy of being able to talk to thousands one minute and can't to 6 in a room the next. It confounds me. There are times when stuttering makes me sad. I can't lie. But life is wayyyyyyyyyy to short and we only get one shot and I refuse to let it beat me. Yes I want a cure but until then I'm pressing on.
I love all of you. Stay strong. Few understand your struggle but I do. And you understand mine. That gives me hope. That gives me life.
Wowzers! This blog is giving life to me. I feel like I've come home to a group of brothers and sisters who share in my struggle. Stuttering is complex. Not to sound cocky but in my life I have mastered many things, sports, writing, art, various things. Most of it through hard work and practice. The one thing I cannot master no matter how hard I try or practice is stuttering. Mastering this sport has evaded me for as long as I can remember. Now let me be up front, stuttering has not beat me into submission although there are days I cry out to God and say why???? I have good days like all of you and bad. I'm always tempted to let the bad outweigh the good because it's painful sometimes. Sometimes my biggest frustration is that I didn't speak when I wanted to. If I'm in a meeting at work and something is really burning on my heart but I stay silent out of fear this too can make me feel like a loser.
Despite all of this I refuse to give up. I'm 34 years old and I'm actually a pastor. How's that for confronting your fears. I'm very outgoing and I preach often. I pastor in one of the largest churches in the country and speak to thousands of people all the time. Here's the kicker. I know what I'm good at and what I'm not and it's strange to manage. When it comes to preaching I can go 30-40 minutes not a single block. This happens almost every time. Only
on occasion do I ever block while holding a mic, but usually i'm able to anticipate it and switch words. Preaching is awesome, it's the one place I can freely express my thoughts. And I do it well. I always write my sermons out but rarely even use my notes. It's truly a gift from God. But here is the thing, I can come down from the pulpit after talking for 30-40 minute not blocks and start stuttering when people up to me after the sermon. Not always but often. I usually hide it but I feel the internal effects of it ( anticipating tough words, word substitution, airflow issues, brain feeling anxious). I'm also good one on one. But when taking to a group of 6-12 in a room, experiences are highly
variable. Sometimes it's stutter central, sometimes it's easy street. Usually I struggle in that context. So you can imagine the dichotomy of being able to talk to thousands one minute and can't to 6 in a room the next. It confounds me. There are times when stuttering makes me sad. I can't lie. But life is wayyyyyyyyyy to short and we only get one shot and I refuse to let it beat me. Yes I want a cure but until then I'm pressing on.
I love all of you. Stay strong. Few understand your struggle but I do. And you understand mine. That gives me hope. That gives me life.
Dear Anonymous,
Thank you for writing, and I'm so pleased everyone here has brought you some comfort.
I admire your attitude and courage. Stuttering certainly can be a crafty little beast. It's great to see you're putting it in its place. *:o)
All the very best!
Sophie
Yes, we have bought the speech easy product, like the other people has said, it worked for a very short period of time. My son is 16, has always stuttered since being small, as he gets older in school it has gotten worse. I did the same when I was in school, my mother suttered till she was in college, but my son has it the worse. So paying the $ 5000.00 for speech easy was a waste, yes, my son is willing to try Pagoclone, anything to help. Thank god for the teachers that understand, ok Doctors, it is your time to make things work. We are willing to try anything any where now, good luck to everyone.
Illinois
Dear Illinois,
Thank you for sharing your son's experience.
That stinks about the Speech Easy. I hope he has better luck with Pagaclone.
It's great he has a parent willing to do anything to help him. *:o)
Best wishes,
Sophie
After getting my checkup phone call from the research company this week, I was told that it was highly unlikely that the study would continue since it is reaching the end and they have no instructions on what to tell those still in the study. Being a former pharmaceutical sales rep who also stuttered his way through the job, I didn't go into the trial with high expectations. This is because I had seen and sold meds that were at their best, 50 to 60% effective for a sample group. Fortunately, though, I had also seen hundreds of psych beds emptied when Prozac was released in 1989. Interesting factoid, in the mid-80's, Lilly was going to abandon Prozac (fluoxetine) studies because after economic review, the antidepressant market was too small. Their studies though, showed 50% efficacy and somehow it came to market. In hind sight, it was clear that there was no $$ market because amitryptiline, which was the primary drug for depression, had so many side effects that very few people with depression stayed on it to get the clinical benefit.
A few years ago, in anticipation of my upcoming wedding and accompanied concern over being able to say my wedding vows, I was surfing the net for stuttering med info to see if there was any "news" and came across pagaclone and found a link on the company's site to sign up for more info if there was a trial. I had COMPLETELY forgot about it. Then, around December, 2008, I received a call from a research office in Georgia wanting to sign me up for the pagaclone trial. I explained that I lived in the West and by some kind of grace, they took some interest in connecting me to the closest office for me which was 225 miles away. After driving to the site a couple of times and going through the process, I got into the study. Being 42 at the time, having worked on my fluency through self and clinical therapy with moderate success, I thought of putting myself in this situation as more for the scientific advancement and study of SOME medication for alleviation of stuttering. What I experienced after being in the study for a month was completely unexpected. I "forgot" I was a stutterer and was finding myself in speaking situations that I realized had, over the years, become subconscious avoidance patterns. I had been speaking for about a week and I realized I wasn't even thinking about easy onsets, full breaths, etc. All of my "techniques" I had acquired through the years of speech therapy, weren't even a thought in my mind as I began to speak or thought about piping up. I was once told by my speech therapist in Colorado during college to listen to "normal" people talk and take note of their disfluencies. I did this with her in several environments and was amazed at how many normal people have a significant amount of disfluencies but wouldn't in their wildest dreams consider themselves stutterers or be seen by others as stutterers. Come back to the study, by the second office visit, I was actually attending business networking opportunities and really advancing in some business areas. When it was my turn to read a bible verse in bible study group, it was absolutely second nature to just read it in front of the group like I was reading it to myself. Then, third office visit in Sept 2009, new bottles of pills, two weeks later, I found myself anticipating speaking situations like it was a year before. This time, though, I saw the speaking anxiety more clearly. I called the research office and they informed me that in study protocols, a 1/3 of the group that started on active med was going to be put on placebo, and that on my next visit, if I wanted to continue in the trial, it would be open label active ingredient for 10 or so months. A couple of weeks after that visit, I was back in a world of blissful, anxiety free fluency.
Wow, that 10 months is up in early November. My quality of life without major stress from speaking situations this past year and a half is NIGHT and DAY. I should say though that not all stress is gone from speaking situations. It is just more normal now. Like when I need to confront someone, speak in front of a group I don't know very well, or just having a crappy day. But that stress feels "normal". To summarize, my experience in the trial has been life changing. Stuttering and disfluency is a complicated condition. I don't think this medication is a magic fluency creator. I think it worked on the areas of my brain that somehow produce consistent small, medium and large panic attacks while speaking and when I am anticipating even the most speaking situations. I know that not everyone in the study had the same experience. I feel extremely blessed to have been included in the study and to have experienced the everyday benefit of pagaclone. In the words of one of my marketing professors, it had the basic marketing benefit of "It works for me."
Dear Anonymous,
Congratulations on finding something that works for you!
It sounds like, in your case, Pagoclone's main effectiveness does lie in reducing the anticipatory anxiety of stuttering. I wonder if that's the case for others who have benefited from it.
Thank you for sharing.
Sophie
I don't know how long ago this thread was last added to but it's been one of the most touching things i've read about stuttering in a long time. I'm lucky to have a lot of friends, but i've never even mentioned my stammer nevermind had any kind of conversation about it with the majority of my closest friends, and reading your comments really does make me feel so less alone. I'm a 22yr old, just finished uni in the uk and now have to find a job. I'm beginning to despair slightly as the majority of jobs i've applied for require an initial phone interview, which obviously, I don't excell at (i stammer much more on the phone than in person) and i'm being rejected by job after job. The problem i'm facing is how can I make money, pay my rent and generally survive if i'm unable to get a job due to my stammer? I've taken zyprexa a few times which does help, but only for a month at a time at most, until the beneficial effects stop. The stress is killing me, i'm over 6ft and dropped to 8 stone in weight a few months ago. Valium does help in the short term (before my final year 30 minute presentation at uni I had 2 xanax (similar to valium) and had no anxiety or nerves what so ever. I stammered a bit, but that doesn't bother me, as long as I can get my point across in the allotted time), and even tho I can't get prescribed valium (doctors in the uk virtually never prescribe it), I do have a source of pretty much unlimited valium available to me. It is obviously a very addictive drug and I know it's not a good idea to take it regularly. I just don't know what to do. Does anyone know how close pagaclone is to being approved and put out there?
Sophie I think all your views are 100% correct, and you should be very proud of this thread, it's good to know there's so many good ppl out there.
Ric
Hi Ric,
Thank you for your kind words. I wish I could wave a magic wand and make the job search easier for you.
Phone interviews are really tough, but you will get a job. It might be a longer journey than you'd like but there are jobs out there for you and you will find one.
I'm afraid I don't know when Pagoclone will be widely available. Hopefully someone more knowledgeable than me will chime in.
In the meantime, if you haven't already, I think it might help to approach these phone interviews the same way you approached your 30-minute presentation. You said stammering a bit didn't matter; the main goal was to get your point across. Likewise, your main goal with these telephone interviews is to get your point, your personality, and your credentials across, not to have pretty speech.
The stress we experience from stuttering has a lot to do with what we choose to focus on. If we focus on getting our point across any which way and maintaining the general flow of speech no matter how imperfect individual words may come out, the possibility of stumbling over a word here and there (or more often) won't be so terrifying, and the resulting stress will be less. But if we focus on speaking without any stammering at all, then we're setting an impossibly high standard for ourselves, the prospect of "failure" (as we've defined it) is huge, and the resulting stress will likely crush us.
I have no idea if this helps. But, please, please don't feel like you're alone. I had 300 rejections from my interview experiences during law school, and I still found a job.
You can do this regardless of whether Pagoclone or any other drug happens to be available to you. Perhaps allow yourself a phone interview, for a job that maybe isn't your first choice, where you let your speech have its own way or you focus only on getting the words out without caring how they come out, and see what happens. You might be surprised.
Hang in there. If you'd like additional support perhaps a bit closer to home, you might think of contacting the British Stammering Association -- www.stammering.org. They'll likely have much better advice, too. *:o)
Wishing you all the very best,
Sophie
Medsheaven.com had changed their website to WWW.MEDSHEAVEN.NET you can order all medications you are looking for from their new site medsheaven.net , I highly recommend them.
Apparently, they're still lost ... despite their move. *;o)
Sophie
Sophie: thank you. Thank you. Thank you. What an encouragement this thread is to me. I must join a support group either in person or online to discuss these ideas further as just talking about these things brings hope to the frontlines of battle. One for all, all for one!!
On a sidenote, referring to anticipatory anxiety, have you or anyone else here heard results of simply taking small doses of propranolol? it is widely available and low in cost. I've yet to take anything. If Pagoclone is not available yet, why not try something that I've heard even musicians take to reduce anxiety for solos? Your thoughts would be greatly appreciated. Dave Rose
Hi Dave,
You're very welcome. I'm so pleased you found this thread helpful.
Yes, support groups are wonderful. There's nothing quite like interacting with people who fully understand what you're going through.
I'm afraid I'm not knowledgeable enough to answer your side note questions. I'm betting someone in a support group will have something to offer, though.
Good luck with your journey. Seeking out other stutterers is a great start.
Best wishes,
Sophie
I have stammering problem for last five years. I used a lot of medicines
but did not got any result. My doctor suggested me Respiredone (Resperdal) but this medicines got a lot of side effects like heart problems etc. I want to try pagoclone. Should i try on this? Also tell me availability of it.
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