BHostBeth: At this time, it is my great pleasure to introduce you all to the two people that have so graciously offered us their time tonight:

Christina Pearson, the founder of the Trichotillomania Learning Center (take a bow, maam) and Sue Price, who resides on the Board of Directors at TLC.

Trichster: hm, while typing? It is absolutely delightful to be here.

BHostBeth: <<<<<<Stomping feet / Whistling>>>>>>>

SueP37: {{applause}}

BHostSoap: {S applause

BHostBeth: Christina, would you like to begin by taking questions, or would you like to begin by telling us a little bit about TLC?

Trichster: I'll talk a little about TLC.

BHostBeth: Wonderful!

Trichster: When I first discovered that there were other people with Trichotillomania, I actually was so relieved but I was also enraged that there were no resources. I felt that especially for the kids it was really essential to establish a real entity in the world to start the process of alleviating the shame. It started as a little whisper at the peripheries of my consciousness that has grown into a network of love. Hence... TLC

Romnthnt: Since the OCD drugs don't work for the majority of us & since diet seems to play a part in triggering pulling in a lot of us, are any of the Drs. that you deal with researching how diet relates to TTM?

Trichster: Finally, there is actually seeming to be some geniune (athough reserved) interest.

Dr. Richard O'Sullivan is interested in pursueing JK's yeast hypothesis and he is in touch with a leading european yeastologist. It will take time.

Romnthnt: Thank you.

Dewdrop5: I just wanted to say Thank-you! If it wasn't for you I would still probably think I was alone in this!

SStangler: !I second that 100%

Dewdrop5: I told a friend one day that I was so stressed out that I was pulling my hair out, a week later she saw a talk show that you were on, and wrote out the word Trichotillomania as best she could.

Trichster: Hey, way cool! Together we can make a difference!

Dewdrop5: Later that night I looked some stuff up on the web and found a whole network of people to talk to that understood what I was going through.

Trichster: My mother couldn't spell it either when she discovered it for me...

and to know that we are not alone is essential to our healing!!!!

Trichster: This is awesome.

SueP37: You know, I didn't heal just from knowing there were others. I had to MEET people in person, that healed me.

Dewdrop5: Yeah, that was a big help for me, I thought I was crazy for the longest time.

CATHERKAY: What is the yeast hypothesis and I heard strep infections and antibiotics might have something to do with Trich?

SueP37: It's a theory by a man named John Kender. He theorized that a yeast (forget the name) that lives in follicles, causes the irritation that makes us pull.

Trichster: (mallasezia or something like that)

SueP37: So foods that make it grow, would make pulling worse, so goes the theory. He has not pulled for many years and doesn't have the urge, from not eating "bad" foods.

Trichster: It is also becoming evident to many people that different people seem to have different responses. I have not pulled in 6 months and yet I do eat most of the "bad foods"

SueP37: Same with me. But I do think sugar is something to avoid (at least for me) The other part of the question was about strep and antibiotics. There has been some dialogue on the bb about it. Don't know if there are studies though.

Romnthnt: Are there any new drugs coming out specifically for TTM in the near future?

Trichster: Not that I know of. one thing to remember is that anytime we focus our energy somewhere, change will occur. Just paying attention to what you eat, or some other daily factor, can radically impact your pulling behavior.

It seems that after all is said and done that awareness is a HUGE part of the process.

BHostSoap: Next up is KH616, then SStangler, then Venerates, sorry guys

KH616: I have pulled for 26 years. Stopped two months ago. Not sure why.

What are my chances of this lasting?

Trichster: In my opinion, for those of us who have pulled for many years, we need to remember that our nervous systems are "used" to the behavior and that in times of stress.

Other triggers are likely to revert to pulling unless we are aware and have a process in place for dealing woth the impulses if they do happen to arise. I know people who have stopped pulling and never started again.

SStangler: What are some behavioral techniques you recommend/have used?

SueP37: The thing I've found the most helpful which I learned at a TLC retreat, is practice 6 times a day what you will do if you have an urge.

Trichster: Boy, I hope Im not being too confusing... I can't keep it too straight... but for behavior I first monitored myself at least four days a week to see  what was actually going on.

I journalled these responses for four months and found that I had thought that I knew what was going on, but I really got a lot of insight from actually seeing the patterns as they began to emerge.  I also did a year of biofeedback training to teach myself quick and effective ways to reduce physical tension that I didnt know I was carrying. I also have used silly putty for yearsespecially in my car. It is very usful. I have also learned that when I feel the tickle of an impulse. Which is sometimes hundreds of times.

Dewdrop5: Makes sense!

Dewdrop5: In my car is the worst!

Zinacat: Same for me!!

Venerates: Is there any sort of medical test that will definitely 'prove' if I am allergic to yeasts & mite poop? Is there an allergy medicine that would help?

Trichster: How about if I ask John Kender and get back to you?

Dewdrop5: I have noticed that for most women that this starts around the same time they get their periods for the first time, have you found a connection with that?

SueP37: Actually I got my period 2 years AFTER I started to pull.

Trichster: Yes this is true. we see that at puberty is when most chronic pulling seems to erupt, although it can start at any time. I just got a call from an 80 year old who has only pulled a few years.

Dewdrop5: Do you think it has to do with hormones? For the cases that you have seen where the pulling starts at puberty, have you found similarities in what works and what doesn't.

Trichster: I do think that the hormones do probably play a role in exacerbating a pre-existing potential. I have also seen babies as young as 5 months old pull. nowhere near puberty!

KH616: Can the birth control pill increase the urge to pull?

Dewdrop5: It hasn't done anything one way or the other for me, but only been on it for 3 months

Trichster: To finish the last question, the variety of what works is a bit awesome, as so many of us really need individual process.

Automat42: Some peop;le use Prozac to helpcurb trich.. Are there any herbs that have similiar results

SueP37: To answer KH's question, some people pull more wile pregnant, some pull less, some no difference.

SueP37: Since the pull simulates pregnancy, I would imagine the affect on pulling would be similarly varied. Christina?

Trichster: I agree!!!:)) re birth control, we have heard both sides of this. some start, some stop!! all anecdotal, meaning just word of mouth.

Venerates: I have very long periods of time (years) between 2-3yr pulling sprees. Why do you think that is? I'm currently in the middle of a 3 year spree after 7 years of no pulling!

SueP37: Did you do something during that time when you didn't pull?

Venerates: Do something? As in another compulsion? No. I did go to Grad. School, have babies and live over seas.

SueP37: No, I meant what method to stop were you trying, or were you able to stop w/o really trying

Trichster: We find that often when someone makes a transition - like a vacation they stop until they get home or back to school or fall into some routine.

Venerates: I didn't try to stop. I didn't do anything differently. I just stopped.

Trichster: Well, as far as I can tell, TTM is a mystery not only to the pros but to us also,. we have so many various insights but who is to say!

Luv Kids 1: Do you find people that have Trich,also have other disorders like eating,emotional,etc.

Trichster: It is generally true that people with TTM are more likely to have mood disorders like anxiety, depression, bipolar, although NOT EVERYONE!!  And yes in my experience eating problems are very closely related to trich. Both are "comforting" and devastating at the same time are "comforting" and devastating at the same time.

Trichster: ttm looks different in the brain scans that have been done. it actually looks like tourettes is similar I do think that the conditions share a lot, but are really different disorders. If you have both, you have both.

Phishmomnj: My scalp drives me nuts when the hair starts to grow back, I start pulling again any lotions that help?

Trichster: When treatment for ttm is given in an ocd type protocol it usually does not respond well which also tells us that they are different  in nature, and thus in treatment.

Venerates: If people with ttm are more likely to have mood disorders...doesn't that lean us towards ttm as emotional?

Trichster: Not really, if you look as everything a chemical, which even a smile is, then there really is because we are essentially in biological bodies. Then it becomes much more difficult to say "its emotional "its biological, its mental.... etc. We are whole systems and it really best to approach it this way.

CATHERKAY: Is there any evidence that a vitamin deficiency can cause the chemical imbalance?

Trichster: What we see with trich here at tlc is that people with ttm cannot handle the higher doses of OCd treatment and thus need to find a way to recognize our particualr sensitivity. For small children, it has been found that an iron dificiency has triggered pulling, but this IS NOT true for adults so dont rush out and overdose on iron which can cause real problems.  We have established a research fund at tlc to hopefully be able to look into those areas that are of real interest to those of us in the trich community.

Romnthnt: I just have comment, first of all, thanks for clarifying about the higher doses of OCD meds. I would like to also mention that I think that Beth deserves a lot of recognition for all that she has done since startting our online chat with only 8 people in January.

KH616: Loud applause

Trichster: YES!!!!! LOVE TO Beth!

Romnthnt: We are now over 200! Great job BETH!!!

SMS0117: If ttm affects so many people, why do we not have the research facilities as we do for OCD'S, depression, etc?

SueP37: Because people with the other disorders are raising a stink!

Trichster: I can tell you that it is probably because no pharmaceutical company   has a product that helps us so far. When meds were found for ocd, they got overwhelming funding from the drug companies that wanted ocd people to come out of the woodwork. For ttm, we need a LOUD VOICE and wee need some intensity of focus to prove to them we are worth investing in.

SueP37: People with trich, by and large, have not come out of the woodwork.

Emtboat: Has a correlation been found between potassium and trich though?

Trichster: Not to my knowledge .

SMS0117: And can you take too much potassium or does it just pass what your body doesn't need?

Trichster: Potassium is esential to the electrical impulses in the body, but you have to be VERY carefull. It can cause irregualrity in the heart rythm so BE CAREFULL

SueP37: SMS, too high an amount can be toxic, but it's REALLY high.

Trichster: Again, remember when lithium came out? It was thought to be a substitute for salt for people with blood pressure but people died because of its toxicity.  So these things are really important to our function, we just need to be well educated before we proceed.

SueP37: The research fund needs more funds, so we can study the link with trich and potassium, and anything else.

BHostBeth: I would like to give you guys the opportunity to share with us the conference date coming up, and anything else you can think of...

SueP37: Christina, tell everyone about the retreat!

Trichster: I hope to see many of you at our tlc retreat in august!

Trichster: The retreat is a backdrop for transformation, sometimes incredibly uncomfortable but all who have attended have been changed in some way

BHostBeth: And you can get your hair cut, too!

Trichster: There are scholarships. We do not have money, but I do not believe that someone should be turned away for lack of funds. we have already suffered so much. We do payment plans. volunteering, whatever!!!

Emtboat: Thanks for this conference tonight! APPLAUSE

Trichster: Thanks for putting up with my typing!!! love you ALL

BHostBeth: Christina that's wonderful!!!

SMS0117: Where is this conference and how do I get information on it?

JasmineGld: retreat.. is it aimed at adults? what about kids?

BHostBeth: Thank you and Sue SO much for giving us your time tonight!

Romnthnt: Thanks for coming Christina

SueP37: I'm putting together a web site on the retreat.

Venerates: Yes, thank you all! Your time and information mean alot here!

KH616: thank you everyone. This was very helpful.

BHostSoap: SMS, it's in Boston aug. 22 - 25 (i think) I"ll find out for you

SueP37: adults, kids, men, women. . .

Trichster: we have an adolescent program, a family member program and a

pullers program

BHostBeth: Sue that's wonderful! The Boston retreat is August 22-25.

SammondACE: Is there often a trich chat here for AOL? I used to go to a

regular trich chat room

BHostBeth: Sammond - yes, I can send you a newsletter if you'd like with that info in it!

BHostSandi: Everyone...the retreat is fabulous!

BHostBeth: Sue & Christina, thank you AGAIN for coming! You two are wonderful!