Here is the beginning of my list. I will try to add more detail as I remember things, or as you all ask questions. If you would like something clarified, please leave a comment and I will try to answer. Please specify whether you would like me to respond in comment or email form.
Meds I’ve been on:
Anafranil
Prozac
Zoloft
Paxil
Effexor (SNRI)
None of these meds ever seemed to help with the pulling. I have depression (it runs in my family) along with my Trich, so these meds help with that. When I am not battling my mood, it makes battling the pulling much easier. Anafranil was my first med and I was in middle or high school. I don’t really remember it at all, but it must not have done much since I switched to Prozac before long. I took that on and off for years, until the cost became prohibitive. Zoloft and Paxil did not work for me at all. I became a total zombie and would be so tired I couldn’t even get my mouth open enough to yawn. It was ridiculous, and scary since I have a 45 minute commute to work. Effexor is what I’m on now. I’m at almost the max. dose they will give for TTM patients. Effexor was shown in at least one study to lower pulling behaviors, but I haven’t noticed any change.
Oddly, I was never aware of my pulling being pleasurable until I started the Effexor. I used to just hate my disorder and so I had a “fight to win” attitude against TTM. However, since effexor has allowed me to feel positive emotions, I realized how much I really do enjoy pulling. I hate the hair loss, but the sensation of pulling, or of giving in to that urge, is disgustingly pleasurable. So in that sense, the Effexor has actually made CBT harder because I’m aware of the part of me that doesn’t really want to stop pulling.
Behavioral or Therapeutic Techniques I’ve tried:
Talk Therapy (some psychoanalysis)
Hypnotherapy
Support groups
Guided Imagery and Music (http://www.archedigm.com/bonny.html)
Behavioral modification (positive reinforcement/rewards)
Physical prompting (gloves, hats, etc.)
Verbal prompting (reminders/mention made by family when they see me pulling)
Cognitive Behavioral Therapy (http://www.nacbt.org/whatiscbt.htm)
Talk therapy can be very useful, especially if you don’t have loved ones to share your struggle with. There are a million types of talk therapy and you have to find a therapist that you share philosophies with for it to be helpful. Only recently have I found a therapist that I connect with enough for the sessions to be useful. As a kid I was forced to go to a couple that I hated, and so of course, I got no where!
Hypnotherapy seemed to work well for me. I don’t remember how it affected my actual rate of pulling (I did it close to 15 years ago), but I remember the hypnosis being a very rewarding experience for me. If you are interested in this form of therapy, do your research and get referrals from another therapy professional. I do not recommend hypnosis on tape. The experience will be much more effective if the therapist can tailor the sessions to your specific needs.
More recently I have tried GIM, which is a form of music therapy, which is my chosen career. During my internship, I found a collegue who had openings and tried this. I LOVE GIM and recommend it to anyone, whether you pull or not. It is an amazing way to explore the layers of your consciousness and to learn about yourself. Basically, with the support of the trained music therapist, you listen to music and allow imagery to float through your mind. As you go, you tell this to the therapist who documents it. After the session, you discuss the imagery and how it applies to your day to day life. Again, it doesn’t necessarily help with pulling, but it can help with a lot of the emotional issues that surrounds pulling.
I’ve tried various forms of behavioral modification over the years. Since I’m a behavioral music therapist, it drives me crazy that I can design treatment programs for other people, but I can’t make them work for myself. You can browse the categories list for posts about the different things that I’ve tried, including tokens, points, hats, gloves, stuffed animals, beads, etc. This is really hard for me to be consistent with, so it often doesn’t work long term.
Right now I am just started CBT. I understand it in principal since it is behavioral in nature. I’m finding my problem to be that even if I want to stop pulling, I have a really hard time initiating the thought restating process as well as the other techniques. I kind of get stuck with a feud in my head between wanting to give into the urge and wanting to resist. I haven’t been very successful getting out of that inner battle to really put the CBT techniques into place. Since a lot of the work is done as “homework” outside of the session, I find that my laziness gets in the way. Its a lot less uncomfortable to just pull and deal with the frustration, than it is to resist the urges long term. I’m going to keep working on this one, but I need to find something that really gets me motivated enough to remember that I have techniques to put into place when I need them.
Adding to my list, although these aren’t really treatments:
Holy Basil Tincture: Holy Basil is an herb recommended to me by my friend who is a homeopath. She did a case study on me a while back to help with my pulling. She’s tried a few things with me, but I’ve noticed the most effect from Holy Basil. It works to block cortizol which is the “stress hormone.” By blocking this, I don’t feel as stressed and anxious. Overall, that is just a nice feeling, but I think that it helps me to not pull or at least to resist urges. I take a liquid version found in health stores because it works better with my digestion. It is more readily found in capsule/pill form.
Biotin Supplements: Biotin is a B vitamin found most commonly in prenatal vitamins. Biotin is supposed to encourage hair and nail growth as well as metabolism of fats (I believe). Right now I’m talking 1000mg per day as that seems to be a helpful amount for me. Whether it really helps my hair grow better, or if it only seemed to because I was pulling less the last time I took it, I don’t know.
Nioxin Hair System: I’ve been using Nioxin shampoo, Scalp Therapy, and Scalp Treatment on and off for about 10 years. Again, I can’t really tell if it makes any difference at all since I don’t know what “normal” growth would be for me. It has menthol in it which makes my scalp feel good, so that is part of why I use it. I’ve also used it as a behavior award: If I go a day without pulling then I get to use the “hair growing shampoo” the next day. If I pull, then I have to use my regular cheap stuff.
So basically, there’s no research, numerical or anecdotal, as to whether any of this stuff really works. Still, I try things as they are suggested, and maybe someday I’ll find something that really works for me.
Update: April 22
I stopped taking the Holy Basil recently because I was noticing some irritability that I didn’t expect. I don’t know whether the HB was interfering with the Effexor, but I thought I’d got off of it for a while, try it again later, and see if the same thing happens. St John’s Wort is known to have bad interactions with meds, so I figure HB could potentially do the same thing.
As noted in my post from today, I’ve instituted diet changes. The yeast theory behind TTM has been in my head for a few years, but I wrote it off. Then a couple of my doctors suggested removing refined sugars from my diet, which I wanted to do anyway. Whether or not Candida (yeast) causes or exacerbates pulling behavior, removing sugar and yeast from my diet are probably going to be beneficial. My doctor also wanted me to go to a gluten free whole grain diet rather than a whole wheat based diet like I’d been thinking.
All in all, my pulling seems to be better, but today when I slipped and ate both sugar and wheat, my afternoon pulling went up. Coincidence, or not, I don’t know, but I’m going to be keeping “an eye” on things. This dietary change is a big pain, but if it means little to no pulling (or at least a manageable level to where my hair will fill back in) then it is worth it. I don’t want to be on medication forever, and it would be awesome if just changing foods could help control my pulling…or at least help me to help myself control it.
Lastly, I made another visit to my homeopathic practitioner. She gave me a few remedies for some other symptoms, but is investigating to see if there’s anything she can suggest to help me with the pulling too. Now that my headaches are way more under control (between the homeopathy and kinesiology), I’m hoping they can help me figure out some of this pulling stuff.
So, there are a lot of things I’ve tried, and now I’ve finally found some new things. Hopefully, I will have good news to report soon.
Hi, I just put a link to your blog in mine! I decided to take my normal blog and post for Trich Awareness Week. I just wanted to ask you how the no-sugar thing has gone. I stopped eating sugar and have only pulled 3 hairs in one month. And the three I pulled were on days I had sugar, too! I was just curious how it has gone in the long term!
UPDATE May 2, 2009
It’s been a year since I last updated. I have gone to a completely medication free lifestyle. I take no prescription drugs, nor over the counter. I rely on supplements, the foods I eat, homeopathy & kinesiology.
I haven’t had much success with my pulling in the last year. I stopped counseling due to time & money concerns, plus the fact I really didn’t feel it was going anywhere. I still can’t find anyone around here who actually has some successful experience treating TTM. I feel like that’s what I need since I’m so embedded in my disorder.
However, on the mood front, I started taking cod liver oil and a nucleozyme forte supplement recommended by my kinesiologist. These really seem to help with my mood and I can tell if I forget to take them for a couple of days. I’m also trying a constitutional homeopathic remedy which is supposed to help me unlock some of the emotional factors that may be holding me back. It’s made me even more weepy and sentimental than normal, so that has been interesting.
I continue the gluten & sugar free diet, although I’ve been slipping a lot lately. I need to go cold turkey again and make myself stay on track to see if I start feeling better again. Some of my old health concerns are creeping back up and the food is the most obvious reason why that might be happening. Unfortunately sticking to a bunch of food limitations is another element of impulse control (not just eating everything I want) so I have a really hard time balancing taking care of my pulling and my eating.
So often I just want BE, but then I’m not happy that way either, so it really isn’t a balance I’ve come to find.
Hey Dawn, I don’t know if you’d remember that I’m trichy too. I have been an eyelash yanker since I was about three years old. I remember seeing you in the locker room years ago(middle school?)and I don’t know if I ever brought it up or not. I do know that I thought about it. Anyways, It’s great to see you being so pro-active and looking so good! Keep up the fight!
All the Best……………Jaime
I don’t remember you mentioning, at least not that early on. Maybe later in high school? I wish I had known though it would’ve been nice to feel slightly less alone. I’ve been lucky with a good group of accepting friends though.
Hi. I just wanted to say thank you for being pro-active in helping people who have Trichotillomania to know they are not alone, and for doing what you can to bring awareness to this disorder. My 12 year old daughter has been pulling her hair ever since she was able to grasp for and reach it. I thought when she was a baby that her hair was just being rubbed off while she nursed, but as she got older, I began to see big patches of missing hair. I had no answers to what was going on with my baby (at that time) until I saw a Montel Williams show about young girls with “strange” disorders. It is a daily struggle for her. She often asks me why she had to have Trichotillomania? My answer to her is that becuase I want to be a Nurse, her having this disorder will give me the ability to help another young girl someday who thinks that something is terribly wrong with her to know that she has this disorder and that she is not alone. Thank you. I added your fundraising page to my website.