Inositol and Trichotillomania

EDITORS NOTE: DR. FRED PENZEL HAS BEEN A LONGTIME FRIEND OF THE TRICH COMMUNITY. WHEN HE TOLD US ABOUT HIS EXPERIENCE WITH INOSITOL, I SUGGESTED HE WRITE ABOUT IT FOR US. REMEMBER, THIS IS INFORMATIONAL ONLY, AND MAY NOT BE OF USE TO EVERYONE. IF YOU DECIDE TO TRY INOSITOL ON A TRIAL BASIS, PLEASE WORK WITH YOUR HEALTH CARE PROFESSIONAL TO DETERMINE IF IT IS APPROPRIATE FOR YOUR BODY. THIS IS REALLY IMPORTANT. DON'T MIX CHEMICALS (NATURAL OR SYNTHETIC) WITHOUT A FULL UNDERSTANDING OF THE POTENTIAL INTERACTIONS. JUST BECAUSE IT IS "NATURAL" DOES NOT MEAN THAT IT IS ALWAYS BENEFICIAL! BUT, ON THE OTHER HAND, OVER THE YEARS, MANY PEOPLE HAVE REPORTED THAT DIETARY CHANGES AND VARIOUS SUPPLEMENTS DEFINITELY AFFECT THE URGE TO PULL, SO PERHAPS THIS ARTICLE MAY ADD A LITTLE MORE TO YOUR "TRICH TOOL-BOX!"

At the American Psychiatric Association (APA) conference in 1996, a paper was delivered on the treatment of obsessive compulsive disorder with inositol, one of the B-vitamins. It seemed to indicate that this might be a viable treatment for OCD. As someone who treats OCD and related disorders, I am always on the lookout for new approaches. I did some further research, and found that Since the early 1970s, a number of papers have been published on the use of inositol in the treatment of OCD, depression, and anxiety. It seems that Inositol is converted by the body to a substance that regulates the action of serotonin within brain cells. Serotonin, as we know, is a brain transmitter chemical that has been implicated in OCD and trich. Not all of these studies were conducted in the most scientific manner, but nevertheless, my curiosity had been piqued.

After several discussions with one of the psychiatrists at my clinic, we looked into its safety and possible interactions with other drugs. It appeared that most people took in an average of about 1 grain of inositol each day in their diets. We discovered that apart from some harmless digestive tract side effects, it appeared to be quite tolerable, and would not interact harmfully with any of the SSRIs our patients were taking for their OCD. At about the same time, (September, 1996) a double-blind placebo-controlled study on the use of high doses of inositol was published in the American Journal of Psychiatry. The study was conducted by Dr. Mendel Fux and colleagues in Israel. Although it was only a small study involving thirteen individuals, inositol was found to have a significant effect upon the symptoms of OCD. It was shown to work as well and as quickly as the SSRIs Prozac and Luvox. The patients in this study had either not been able to find relief via standard medications, or were unable to tolerate medication side effects. Dosages in the study were built up to 18 grams per day.

The article proved to be the convincer for us. We had a number of OCD patients, who were only getting partial relief from prescription antidepressants, so we decided to suggest the possibility of their trying inositol as an augmenting agent, in addition to what they were already taking. I should mention here that our clinic is a rather busy treatment center, and unfortunately, not really geared toward conducting research, so we really didn't collect any data on this. I know my learned colleagues will shake their heads at this, and they would be right. In any case, we started to see some positive results among approximately 50% of those who tried It. In most cases, these results ranged from at least mild to moderate relief of symptoms. A few reported even more improvement. We have generally built up our patients over a six-week period, starting with 1 teaspoon (2gms) twice per day, and going as high as 3 teaspoons, three times per day. It turned out that not everyone required the full 18 grams used in the Fux study. One person was seen to improve on just 2 grams daily.

Recently, we began to take a second look at some of our trich patients, some of whom, like the study participants, were unable to get help from medications. A few others were somewhat fearful of medications, and were looking for an alternative. We suggested that they try using the inositol in the same manner as our OCD patients. Since that time, we have seen some positive results in several cases, In both children and adults. I have also received some positive calls from various hair pullers around the country who have heard of inositol, and tried it. Although it was probably not as precise as we would have liked, we based our children's doses on body weight, figuring roughly that a 40-lb. child could tolerate a maximum dose of up to 6gms. of inositol per day.

 I do not believe that inositol is a 'miracle drug' for everyone with trich. There are no miracle treatments. I am sharing this information with the readership in hopesthat it may help at least some people who have not otherwise been able to get relief, or who are too afraid of prescription medications to try anything. I also decided to write about this because I felt that some people might hear of this through some other sources, and try inositol without any guidance.

**Please note the following: This advice is purely informational, and not in any way meant to be a substitute for treatment by a licensed physician. Do not try this, or anything else, without first consulting your physician. If your M.D. has not heard about it, refer them to the American Journal of Psychiatry article and let them decide.

Obviously, before you run out and try anything new, you should always consult your physician. If your physician recommends trying this, you might also want to mention the following information to him or her:

1. It cannot be taken together with Lithium, as it seems to block its action.

2. The chief side effects of inositol are gas and diarrhea. Some people get this for the first few days and then it clears up. Some of those taking it never have this side effect, and some only get it when they take more than a particular amount.

3. I have heard reports that caffeine lowers inositol levels in the body, so if you are a heavy coffee drinker, you might consider cutting down or eliminating this from your diet. Actually, stimulants such as caffeine can sometimes contribute to hair pulling, etc.

4. It should be purchased in powdered form, and taken dissolved in water or fruit juice. It has a sweet taste, and is chemically related to sugar. If you mix it continuously for about 2 minutes, and if it is allowed to stand for about 10 minutes after mixing it, it seems to dissolve better. If it still doesn't dissolve well (not all brands do), stir it up and drink it quickly before it settles.

5. Inositol is a water soluble vitamin, so although the doses appear to be large, it will not build up to toxic levels in the body. Whatever the body doesn't use is excreted. The average person normally takes in about 1 gram of inositol each day via the food they eat.

6. It can be built up according to the following schedule (1 teaspoon=2 grams, and be sure to use a measuring spoon) for an adult:

• Week 1 - 1 teaspoon/2x per day

• Week 2 - 1 teaspoon/3x per day

• Week 3 - 1.5 teaspoons/3x per day

• Week 4 - 2 teaspoons/3x per day

• Week 5 - 2.5 teaspoons/3x per day

• Week 6 - 3 teaspoons/3x per day

A child can be built up to 3 teaspoons per day over the same six week period. Dosages for adolescents can be adjusted according to weight. In either case, it is best to allow side effects to be the guide. If they begin to occur, it is not considered wise to increase the dosage unless they subside.

Once a person has reached either the maximum dosage, or the greatest amount they are able to tolerate, it is best to try staying six weeks at that level to see if there is any noticeable improvement. If there is none by the end of that time, it should probably be discontinued. As with any treatment, those who are absolutely positive that it will help are only setting themselves up, and may wind up more than disappointed. Everything works for someone, but nothing works for everyone.

One further note. I know personally of one case where an adolescent with trich was administered a combination of inositol and a substance known as 5-HTP, which is a breakdown product of the amino acid L-Tryptophan. The body manufactures serotonin from 5-HTP, and serotonin is believed to be one of the brain transmitter chemicals implicated in trichotillomania. Taking this is believed to raise serotonin levels in the brain. This adolescent got partial results with inositol, and seemed to get a complete remission of the urge to pull with the addition of 100 mg. of 5-HTP daily. 5-HTP can cause drowsiness, and is usually taken at bedtime. It should never be taken with any prescription antidepressant or herbal products such as St. John's Wort, as it can cause a very serious condition called serotonergic syndrome.

Again, none of the above is meant to be a substitute for expert medical advice. As with inositol, 5-HTP should not be taken without the supervision of a licensed physician. I find reports such as this rather interesting. and further study is clearly needed. It may have implications for the future treatment of trich.

*** As an interesting side note, a study was published (Seedat et al, 2001) since this article was written, in which three women with hair pulling and compulsive skin picking were treated with inositol. All three were seen to improve and this improvement was seen to continue through a 16-week follow-up period. Hopefully, there will be further studies on the usefulness of this compound.

If you would like to read more of Dr. Penzel's writings on Trichotillomania, take a look at his self-help book, "The Hair-Pulling Problem: A Complete Guide to Trichotillomania," ) Oxford University Press, 2003. You can find out more about it at www.trichbook.com

Fight for Your Rights: Getting Insurance to Pay for Your Treatment

Over the years, I have written a number of articles about the treatment and acceptance of Body-focused Repetitive Behaviors (trich, skin picking, or nail biting), or BFRBs as they are known. These are all very practical issues, to be sure, however, another practical issue I would like to inform you about has to do with getting your insurance company to cover the cost of treatment. If you are lucky enough to be able to pay for your treatment out-of-pocket, then this article will probably not be of much interest to you. If, however, you rely on health insurance to pay for treatment, then read on.

There is a little secret that your insurance doesn't want you to know about. The rules say that your company is responsible for providing you with adequate treatment by properly trained practitioners. This is particularly so if you belong to an HMO, are required to see doctors who are a part of your plan, and are not covered for the services of professionals outside of your plan. BFRB specialists are, unfortunately, in short supply, and chances are good that you will not find one within your company's list of providers. The plain truth is that many specialists do not work for insurance plans. This is also true of most BFRB specialists. 

You will most likely start by calling your insurance company to ask someone in customer service whether or not they have any practitioners who treat BFRBs. Before you make this first call, there is one word of caution. Always be sure to take notes of every conversation you have with anyone there, and always get the full name of each person you talk to. Insurance companies have a nasty habit of forgetting things they have promised or information they have given out. When you call a customer service representative at your plan, and ask for the name of someone local who treats BFRBs such as trich or skin picking, you may be given several names. Find out where they are located, as there may be rules about how far your company can require you to travel to see someone. Usually, you cannot be required to see someone outside a certain radius. Alternatively, they may ask you such things as, "What is trichotillomania?" or "Is skin picking a real disorder?" 

In the former case, if you call the professionals whose names and numbers they give you, you will most likely find (unless you are particularly lucky) that they do not treat your problem and cannot fathom why the company gave you their name. If they say they do treat BFRBs, grill them on how many cases they've treated, what methods they use, and what kind of training they have to do this. In most cases, they will not have the right answers and will probably get a bit cagey with you. If none of their professionals pan out, you graduate to the next step, and are now in a position to make your plan give you permission to see the therapist of your choice. If they actually admit they have no one, this is even better, as you will certainly be able to force them to let you see whom you want, even if that therapist is not officially a part of your plan. 

What you do next, in either case, is to inform your insurance company that you have found someone who is considered competent to treat what you have. I should add, at this point, that to make all this work, you need find that competent professional before you set all of this in motion. Also, you need to make sure they are properly licensed, either as a psychologist or a social worker.

If your company admits that they have no one, they will go onto contact the practitioner and negotiate what is commonly known as an "ad hoc," out-of-network, or "single case agreement." This will enable the professional to be paid their full fee, without your having to pay more than your usual co-payment. In effect, you will be covered on an in-network basis, not out-of-network.

If they decide to put up a fight and get difficult about it, they will start by either telling you they simply do not cover out-of-network providers, or, if you have out-of-network coverage, that you are free to see someone outside their list, but that they will only pay out-of-network rates usually 50 percent of a fee that they think the practitioner should be charging (generally a lot lower than the going rate). At this point, you have to get more assertive and say something like, "I'm afraid you don't understand the situation. You have no one in your network who is qualified to treat me, and since you are obligated to provide me with care under the terms of my contract, you must now allow me to see someone out-of-network, but on an in-network basis, and you will have to negotiate a fee with them." If they now realize you know your rights, they will ask for the name and phone number of the practitioner, and will call him or her to negotiate a fee. 

Before you show up for your first visit, make sure the practitioner has received a contract or statement of agreement in writing from the company. The paperwork should state how many visits have been initially approved with the practitioner, and the rate your company has agreed to pay this professional for various services. The standard insurance service code for a first visit is 90801, and for regular office visits of 45 minutes is 90806, and the contract should clearly state how much will be paid for each. You will also need to know if you will be required to pay your standard copayment at each visit.

If the insurance company still resists, you must then ask to talk to a supervisor, and assertively explain the situation one more time. If they insist that they really do have a practitioner, ask for that person's name and credentials. Also ask if they are known specialists, and have specific training in treating TTM or other BFRBs. Also ask how many people with the disorder they have treated. Since you have already called a whole list of people, you may be able to inform them that the professional they have in mind for you, a) really isn't qualified, b) isn't taking new patients, or c) didn't know what TTM was, etc. Hopefully, at this point, they will recognize they are now in a no-win situation and will give in. Most companies do at this point. If you have an unusually stubborn company that can't tell when they have no case, you may have to contact the state agency that regulates insurance companies. As I mentioned earlier, always be sure to get the full names of everyone you speak to at the insurance company, as you may need them if you file a complaint.

The only exceptions that I have ever encountered to all of the above have been special contracts negotiated by employers with insurance companies. These agreements may forbid an insurance company from negotiating fees above set levels. In such a case, the employer has tied the insurance company's hands, and there is nothing they can do. Fortunately, these types of setups tend to be rare.

Overall, be assertive, speak firmly, don't lose your cool, and indicate that you know your rights as a consumer. If you get angry, you will be labeled as difficult, and will undercut your own position. Just remember that the insurance company isn't doing you a favor if they let you go out-of-network. You (and/or your employer) are paying good money for your benefits and you are entitled to them. Don't be bullied, put off, or take "no" for an answer. Persistence pays off; so don't let them double-talk you. Never forget that you are dealing with a profit-making business with stockholders, and not a humanitarian organization. They are dedicated to paying out as little as possible and will use every ploy they can in order to do this.

I have negotiated many out-of-network provider contracts over the years, and can tell you that this can be done, and is being done by savvy consumers all the time.

Dr. Fred Penzel is a licensed psychologist who has specialized in the treatment of TTM and OCD since 1982. He is the executive director of Western Suffolk Psychological Services in Huntington, New York, and is a founding member of the TLC Science Advisory Board. Dr. Penzel is the author of "The Hair-Pulling Problem," (Oxford University Press, 2003), a self-help book for those suffering from TTM. You can view more information about it at www.trichbook.com. Dr. Penzel can be reached at (631) 351-1729 or at penzel@attglobal.net.

In Search of the Elusive Behavior Therapist

A question I am frequently asked by those who suffer from OCD and Trich is, "How can I find a behavior therapist near where I live?." It must seem to many people that therapists with this specialty tend to be rather rare and exotic creatures. In truth, there really aren't all that many behavior therapists here in the U.S.. Also, they generally tend to congregate around certain regions and usually near major metropolitan cities. This is, after all, where the greatest number of patients are, and let's face it, behavior therapists have to make a living like anyone else. Don't get too discouraged. There are still a fair number of them scattered around, and graduate programs are turning out more all the time. My purpose in writing this article is threefold: first, to help you locate a therapist of the behavioral persuasion; second, to show you how to question them about their qualifications and services; and third, to give you at least some information so that you will be able to evaluate what they have to offer you.

Where and how to look:

There are several sources of referral information that you will find helpful in your quest, and I will give them to you here.

• The Trichotillomania Learning Center (TLC): the obvious place to start. They are the premier organization for those with this disorder. You can call them at (831) 457-1004 for the names of practitioners they know of in your area. Their web address is www.trich.org . and their website is quite helpful and informational.

• The International Obsessive Compulsive Foundation (IOCDF): They maintain a large national referral list organized by states, and you can call them to request their listing for yours at (203) 878-5669. There is no guarantee that the OCD specialists they list will also specialize in trich, but they may, or else those whose names they give you may know of other practitioners in your area. Their web address is www.ocfoundation.org

• The Association for the Advancement of Behavior Therapy (AABT): A professional organization whose members practice behavioral therapies. While they do not maintain a listing of inch specialists, they do have a list of specialists in OCD which is organized geographically. Again, these specialists are worth calling for the reasons mentioned above. Once again, even if some of these practitioners don not treat trich themselves, they may know other specialists who do. Their website can be found at www.aabt.org

• Your local trich or OCD support group (assuming you have one): Attendees are often a valuable source of information, because members may have already seen many of the local practitioners.

• University hospital centers that have OCD clinics: There are very few trich treatment centers, and you are better off asking to speak to someone in their OCD program. They may have a trich specialist.

• Your county psychological society: This may be a bit of a long shot, depending upon how many members they have, but you never know. They usually list their members by specialties, and may know of a local inch specialist. Sometimes the secretaries at these offices are extremely knowledgeable.

People who staff the organizations listed above are quite helpful and will certainly do their best to help you. Don't be shy about calling them, as they get such calls all the time. As you begin your search, there is one very important point to keep in mind. There is no such thing as the "perfect" therapist. A particular therapist may or may not be the best match for a particular patient depending upon the therapist's style, and the personalities of both individuals. If you are fortunate to live in a location where behavior therapists who specialize in trich are plentiful (Is there such a place?), you will have the luxury of being able to choose from several. My hunch, however, is that you will probably be lucky to have even one such specialist in your area, so you may have to work with them and make the best of it. Hopefully, this person will have the training and be someone you can work with in a therapeutic relationship. If not, you may have to be flexible and try to work with whoever is there. Even if they don't fit your ideal, it still doesn't mean you cannot be helped by this person.

What to ask: 

When you finally locate a practitioner, you would do well to ask them the following questions before making an appointment:

1. What degrees do you have, and are you licensed in this state? (Stay away from the unlicensed. No one regulates them, and you will have no protection if you are improperly treated. In most places, anyone can call themselves a "psychotherapist", whether they've had any training or not).

2. Do you specialize in treating OCD or trichotillomania (depending upon your diagnosis)? What are your qualifications for this? (Have they had some type of supervised training).

3. How long have you been in practice? (If they are the only practitioner in your area, this may be less important.)

4. What is your orientation? (The answer should be cognitive/behavioral treatment)

5. What techniques do you use? (For behavioral therapy for OCD the answer would have to be Exposure and Response Prevention. For trich, the answer would have to be Habit Reversal Training and Stimulus Control- see below)

6. What is your fee? Are your services covered by insurance (assuming that the answer to this is an important factor in being able to afford treatment)? Make sure you check with your insurance plan before calling anyone to find out if you have coverage for outpatient mental health treatment. Also be sure to ask if you are only allowed to see practitioners who are members of your plan's network. Insurance companies try to keep this secret, but if they have no one within their network who specializes in your disorder, they have to let you go out of network, and they will even negotiate the specialist's fee, often paying what that specialist usually charges. Don't be afraid to press them on this.

7. How often would you have to see me? Once per week ought to be enough unless you are in crisis.

8. On the average, how long will it take for me to see some results with this treatment? You should expect to see at least some results within the first six months, assuming that you are cooperating with treatment instructions.

If you don't like some of the answers you are getting to the above questions, or the practitioner gets defensive about answering them, look elsewhere. A reputable therapist should have no problems answering such questions directly.

What you should know:

Once you have made your first appointment, but before you show up. try to educate yourself about behavioral therapy (BT). Just as you would before buying a large household item, it pays to know something about the product. It is important that you be clear about what is proper behavioral therapy for trich. Over the years, I have had many new patients tell me that they have already tried BT and that it didn't work for them. When questioned further, it would become clear that they hadn't had proper BT at all, but something their therapist told them was BT. Most often, they were taught a simple relaxation exercise which by itself, wasn't enough to do the job. Others have tried hypnosis, and although it usually isn't represented as BT, they mistakenly took it for that.

BT for OCD consists of an approach known as Exposure And Response Prevention. To begin, a careful analysis of all symptoms is made, and a rank ordering of all feared situations known as a hierarchy is established. Based upon this information, an individualized treatment program is created, and behavioral homework assignments are given on a regular basis. Patients are then gradually exposed to larger and larger doses of the thoughts and situations they fear, while resisting their compulsions and staying with the resulting anxiety until it subsides. The therapy may either be self-directed, or done under a therapist's direct supervision in the office or out in the community. I tend to favor self-directed treatment, as it encourages people to be more independent and to eventually become their own therapists. It is a lot closer to real life than having someone standing over you and telling you what to do.

At the present time, proper BT for trich consists of what is known as Habit Reversal Training (HRT), as well as Stimulus Control (SC). HRT is composed of four major parts, together with some extra bells and whistles thrown in to keep you motivated and on track. These extras may vary from therapist to therapist. The four parts of HRT are:

1. Keeping records of your pulling behaviors to increase your awareness of your own behavior.

2. Relaxation training to reduce tensions that lead to pulling, and to help you center yourself when you get the urge to pull.

3. Breathing exercises to be done along with the relaxation, to increase the relaxationand to further center yourself

4. A muscle tensing exercise performed with the hands and forearms that is incompatible with pulling.

HRT may be done on an individual basis, or as group treatment. While space does not permit me to give you a really complete rundown on HRT here, you can call or write to TLC to get reprints of previously published articles on behavioral therapy. My article in a previous issue of In Touch (#3 for 1992) gives you a rundown on HRT, and will help you to spot the genuine article when it is being offered.

Actually, good therapy for trich should really offer you more than just HRT and SC. It should take a close look at all aspects of your life: your past history, your working life, your relationships, your general health, your philosophy of life (yes, you have one, everyone does), your spiritual life, the ways in which trich has had an impact on your life, and especially your attitudes toward trich itself and how you view yourself in regard to the disorder. Some people have been so stigmatized by the disorder that this, in itself, needs to be treated before you can even begin doing the HRT. If some of these issues aren't looked into and dealt with, your treatment may never get off the ground due to a lack of motivation or belief in your ability to recover.

There are a number of things which you should look for in a therapist, and some you should beware of. Look for a therapist who:

• listens to you, answers your questions, and doesn't just talk at you.

• answers your calls in a timely way and is reasonably available to you.

• uses the latest accepted treatments that are recognized by leaders in the field.

• not only teaches you techniques to get recovered, but also those necessary to stay recovered. They will show you how to realistically accept the inevitable slip-up and still keep going.

• helps you to grow into the role of being your own therapist - that is, someone who is responsible for their own recovery and who ultimately learns to depend upon themselves.

• doesn't just plug you into a "one size fits all" treatment program, but instead treats you as an individual and tailors (as much as possible) the various techniques they have to fit your particular needs.

• if they are the only one in your area and do not have the training, are at least willing to learn about it on your behalf, and to give it try.

Beware of the therapist who:

• has you come for an excessive number of visits, or seems to keep you coming to them without any kind of endpoint to the treatment

• simply chats with you at every visit but never seems to really work on anything.

• keeps you dependent upon them rather than teaching you to depend upon yourself.

• is flatly opposed to the use of medication rather than having an open mind about it.

• guarantees you results or promises a 'cure' (if something sounds too good to be true, it probably is).

• uses methods that neither you nor anyone else has ever heard of

• uses methods for which there is no scientific evidence

• tells you that your hairpulling is really the result of some other deep unconscious psychological conflict, and that this other problem must be worked out first.

• assigns homework that you find really distasteful, humiliating, or degrading.

• makes comments or observations that you find embarrassing or humiliating.

• keeps telling you that they will eventually get around to the behavioral therapy, but never seems to do so.

Whatever it takes to find a recovery, never give up. In pursuing a recovery, persistence is everything. As long as you keep trying, there is always a good chance that you will succeed. I have rarely seen someone fail to succeed who has stubbornly kept at it. There really are resources out there if you look for them.

If you would like to read more about what Dr. Penzel has to say about OCD, take a look at his self-help book, "Obsessive-Compulsive Disorders: A Complete Guide to Getting Well and Staying Well," (Oxford University Press, 2000) You can learn more about it at www.ocdbook.com .

If Trichotillomania is your problem, take a look at Dr. Penzel's other self-help book, "The Hair-Pulling Problem: A Complete Guide to Trichotillomania," (Oxford University Press, 2003). You can learn more about this book at www.trichbook.com