Wednesday, April 8, 2009

Back with a new forum! And some notes on Pagoclone

Hi... it's me again. Thanks for all the e-mails and comments during the past year.

I had trouble starting up my "diet experiment" last year because I left the country pretty abruptly. I got accepted into an academic program overseas and had to pack in 4 days... life has been kind of chaotic since.

I was living and studying/working in southeast Asia and just got back to the states last month. I have tried many times to recreate the diet I told you about (that made me temporarily fluent during the winter of 2007/2008) but I couldn't quite capture it again.

Although I try to make the best of it, life has still been a dismal challenge stuttering and not being able to speak my mind.

A few days ago, I went to a screening appointment to take part in the Pagoclone clinical trials with Teva/Indevus. I had been enthusiastic about it for weeks since learning they wanted to see me, but when I got there and was handed a big file of documents to read and sign, I decided it was not for me. I live a few hours from the research site and the risk of getting a placebo for 8 months, while staying off any other stuttering medication, just didn't make it worth it for me. Plus, the confidentiality agreement seemed to allow them to use your name in congressional hearings and other FDA board meetings that are public record. I could be mistaken... but that's how I interpreted it. I am a nobody, but I do value my privacy, so that was a clinchpin for me.

I would rather spend the next few months working out a medication plan with beta-blockers and doing what I can to alleviate my stuttering. I'm the maid of honor in a wedding this summer, and I love the bride so much--it would mean a lot to me if I could get through a heartwarming speech for her without stuttering too much (or crying) and if some other medication can help in a small way, I'm all for it.

The idea of beta-blockers for stuttering is not new. Many people have done it with great success. Just read the "hope document" by rick carney, and search "propranolol" in the stutteringforum. I know my stuttering is a symptom of my brain, and misfirings that affect fine motor coordination. I've met many stutterers over the years. We all have tightness in our bodies and stomachs (even when we don't have to speak), interrupted sleep, and are generally anxious about everyday things and have trouble concentrating. Even though we seem to accomplish great things in life.

So, knowing that there is a chemical/hormonal component to stuttering, I've been wanting to try Propranolol for a long time. I just haven't been able to since I've been abroad and haven't quite trusted pharmacies in the countries that I was living in.

Next week, I am starting 20mg per day (10mg in the morning, 10mg at night) of Propranolol (generic Inderal)... around Apr. 14th or 15th. We'll see how that goes.

I'm still going to be blogging about nutrition and stuttering because I think that's definitely an important factor here. It's not a good idea to go on medication and not exercise or eat right.

Today I started taking only 5-HTP, 2 50mg pills in the morning, 2 at night. The serotonin really buzzed my brain! I didn't get much of a chance to test it out on people with my speaking but I'll write more about that tomorrow.

XOXO
SIMONA

8 comments:

- said...

Very interested to read your blog. I did the first screening for the Pagoclone trial two weeks ago, with my second appointment scheduled for two weeks from now. You mentioned beta blockers - have you looked into the GABA supplements at health food stores? Pagoclone has something to do with GABA - maybe you can get similar effects with a nutritional supplement? Keep posting! Thanks, John

Cathy O said...

I do know a few people who stuter that are on the same medicine and it has been workign great for them. Their trial period is over and it looks like they will continue due to the success rate.

As a person who stutters, I find that emotional support is just as important as therapy or medication for our stuttering (if not more important). To meet others who can relate to what we go through with our stuttering helps us accept our stuttering more than anything else. The National Stuttering Association (NSA) is the largest self-help non-profit organization for people who stutter in the country. They offer several programs which provides the opportunity for people who stutter to meet and interact with other people who stutter at local chapter meetings, workshops and annual conferences in which over 600 people who stutter (including kids and teens) attend each year! This year they are celebrating 33 years! Conferences in recent years have included such keynote speakers as VP Joe Biden, Arthur Blank (Owner, Atlanta Falcons), Adrian Peterson (Chicago Bears), Annie Glenn, John Melendez and John Stossel. They all shared truly amazing stories.

To learn more, pls contact them at: www.westutter.org, info@westutter.org or 1-800-937-8888

Anonymous said...

Hi,

I participated in the first clinical trial of Pagoclone and Stuttering. I stayed on Pacoclone for roughly two years on an open label extension after the trial concluded.

I found Pagoclone to be ineffective in helping my speech. To be sure, there was some benefit. I estimate my stuttering was reduced about 10-15%. However, it is no magic bullet. I still had major blocks in school and work situations.

From what I understand, very severe stutterers experienced a greater improvement. I have been rated a moderate/severe stutterer.

Pagoclone is a Gaba agonist, it works on, from what I understand, the GABA-A receptors in the brain.

Instead of a patented pharmacological solution, I have become interested in natural supplements that may enhance GABA.

Anonymous said...

I am wary of 5-HTP as it converts to serotonin in the gut. Serotonin in the blood stream can be bad for the heart, I understand.

I was taking tryptophan, but had a bad reaction to it. You don't want to get Serotonin Syndrome.

shadowx said...

I'm looking forward to hearing how pagaclone goes.


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