BIPOLAR DISORDER FAQ 1.1 - FILE 3 OF 4
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Continued from Part 2... ----------------------------------------------------- 4.4 What medications are commonly used in treatment? ----------------------------------------------------- First, we'll lead off this section with an excellent introduction, written by Joy Ikelman (firstname.lastname@example.org), with additions by Dr. Ivan Goldberg (email@example.com): ****************************************************************************** Ten Little Things I Have Learned About Drug Therapy (1) We believe what we want to believe (about this topic or any topic). (2) We bipolars know how it feels to be on these drugs--despite what the docs might say about how we "should" feel. Side effects are often more complex and difficult than the drug companies/PDR say they are. (3) We bipolars know that the cycles sometimes break through despite the best of drug therapies--even though docs say we "should" be completely stable on this stuff. A lot of the time we just keep quiet when these breakthrough episodes happen or else the doc might raise our dose or hospitalize us. (See Item 2.) (4) We all hope to be the lucky ones in this crap shoot of drug therapy. Initially, we are optimistic. Maybe if we get just the right combination of drugs, just the right dosage, just the right psychopharmacologist, just the right attitude....something, something might just work.... (5) There are some combinations which work better than others. These should be tried first. (6) However, there is no magic formula which works perfectly for everyone. It's mostly hit and miss. So, if something works, stick with it. (7) And, after we find the right combo it may work wonderfully well for 30+ years, or sometimes after a few years it doesn't work any more and the search resumes for another combo that will work. We hope that by then something new and very effective will be available. (8) Manic depression does not have a "cure." The mood stabilizing drugs are a way to cope with the illness. Take the accustomed drugs away and for most folks, the cycles come back full force, sometimes worse. (9) We all have different ideas of what we will settle for, as a result of drug therapy. Some will settle for nothing less than the elimination of all cycling. Some will settle for a little cycling and learn to cope with it in different ways. Some will settle for quite a bit of cycling, as long as the manias aren't too high or the depressions too low. (10) Drug therapy is a choice. The most important thing is stay alive and possibly make some contribution to the few people you interact with in your lifetime. Whatever it takes to stay alive (drugs or not), do it. ****************************************************************************** Now, on to a more general discussion of the meds. Thanks to Millie Niss (firstname.lastname@example.org) for researching and writing the following information: There are three types of medications commonly used in treating Bipolar Disorder: -- mood stabilizers -- antidepressants, and -- antipsychotics. Other medications may be given to help you sleep or to treat anxiety and/or panic attacks if you have them. Because many people need a combination of two or three drugs to get stable, it can take quite some time to find the right medications (and the right dosages of each.) This is usually on the order of magnitude of weeks or months... but it's been known to take *years* to find the exact combination and dosages that work. If the first medication you get does not help, it *does not mean* you are untreatable! Work with your doctor and make sure that he or she is listening to you, and don't give up! Some drugs can potentially cause relatively severe side-effects. Don't hesitate to complain to your doctor and insist on lowering dosages or trying a new drug if the side-effects are intolerable. In particular, mood stabilizers and antipsychotics in high doses can make you very tired and slowed down and "zombie-like." Don't accept this as a "necessary" condition of getting well! Sometimes, as with any drug, you will have to choose between total elimination of symptoms and a tolerable level of side-effects; the key thing is to *communicate* with your doctor about what you're experiencing, and make sure that you know all your options. (That being said, many people do quite well on lithium, or lithium plus an antidepressant.) We're listing potential side-effects below, as we discuss each drug. Our objective here is not to frighten, but to inform and share experiences. Everyone is different; some people will take these meds and experience no side effects; some people will experience side effects that aren't listed here. *Communicate* with your doctor, your pharmacist, and the other members of your health-care team about what's going on with you and your meds. Mood Stabilizers ---------------- Mood stabilizers are the primary treatment for most people. They are supposed to level your moods, so that you neither get too low (depressed) or too high (manic). In practice, they work much better at treating mania than depression, and may have a mood-dampening effect, so that you get more depressed on a mood stabilizer than you were before. For this reason, some people are now calling these drugs "antimanics." Mood stabilizers take a week or two to get a therapeutic blood level and then it may take a few more weeks to get the full effect of the drug. In acute situations, another drug may be needed while you wait for the mood stabilizer to take effect. The most common mood stabilizers are: Lithium (Eskalith, Lithane, Lithobid, Lithonate, Lithotabs) ----------------------------------------------------------- This is the oldest and most common mood stabilizer and is usually the first drug you will get when diagnosed with bipolar disorder. It tends to be fairly easy to tolerate for most people, and stabilizes 50-60% of patients all by itself. Common side-effects are: lethargy, diarrhea, nausea, frequent urination, tremor, weight gain. Symptoms of lithium toxicity are: intense versions of the above, twitching, shaking, dizziness, loss of balance, thirstiness, blurred vision, confusion, convulsions. Note: if you cannot tolerate the side-effects of regular lithium, you may want to try a time-released form of it, such as Lithobid. It is very important to get frequent blood tests when first starting lithium because the therapeutic blood level is quite close to the toxic level. After dosage is established, blood tests can be every six months. It is also a good idea to check liver and thyroid function because these can be damaged by long-term lithium use. The other mood stabilizers are anticonvulsants, used primarily to treat epilepsy but also effective in the treatment of Bipolar Disorder: Valproic Acid (Depakote, Depakene, Epival) ------------------------------------------ Side effects are similar to lithium, long term toxicity may be less severe. Some people find that Depakote gives them depression, or intensifies existent depression. It can also cause sexual dysfunctions (anorgasmia, premature ejaculation, retrograde ejaculation, reduction of libido) in both men and women. Carbamazepine (Tegretol) ------------------------ Tegretol is another anti-convulsant. Side effects of Tegretol are generally more severe than for lithium or Depakote, but some patients who cannot tolerate lithium do fine on Tegretol. Tegretol is also especially effective for rapid cyclers. Side effects: nausea, dizziness, confusion, cognitive slowing, loss of coordination, tremor, sores in mouth & gums, *reduction in effectiveness of birth control pills.* Other anticonvulsants are now being used as mood stabilizers experimentally. Also, Klonopin (an anti-anxiety drug which is also an anti-convulsant) may be used as a mood stabilizer. Some people with mood swings who don't actually get fully manic may get stabilized on an antidepressant alone. (See WARNING below, however.) Antidepressants --------------- -------------------------------------------------------------------------- WARNING: USING ANTIDEPRESSANTS ALONE TO TREAT BIPOLAR DISORDER CAN INVOLVE SUBSTANTIAL RISK OF INDUCING HYPOMANIA OR MANIA. -------------------------------------------------------------------------- Antidepressants (ADs) are part of most people's treatment if their disease includes severe depression. However, they must be used cautiously by bipolars. Although ADs normally do not cause folks to get high even when taken in larger doses than needed, for a significant number of bipolars ADs can cause mania or hypomania and/or may trigger rapid cycling. This is most frequently reported with the older tricyclic ADs (like nortriptylene) and apparently least likely to occur with the AD Wellbutrin. Usually these undesirable effects can be avoided by using an "AD + mood stabilizer" combo, but even this does not eliminate the risk entirely. Any bipolar starting on an antidepressant should monitor their moods carefully and stay in close contact with their physician until it is clear that these effects do not appear or appear only to a degree that is acceptable. Antidepressants can take a really long time to work--six weeks or more-- and then it may take a while to find the AD which works for you, so the hardest part about ADs is often the waiting! Antidepressants come in several flavors: SSRIs ----- "SSRI" means Selective Serotonin Reuptake Inhibitor. These are the newest class of ADs and tend to be the first drugs used these days, although there is no evidence that they work better than tricyclics or MAOIs. The SSRIs are: Prozac, Paxil, Zoloft, Luvox, Effexor (partly) Side effects are: dry mouth, tremor, nausea, insomnia, drowsiness, anxiety, hypomania, sexual dysfunction. The SSRIs can cause rather extreme side-effects if they make you manic (or induce rapid cycling), but they are not very toxic so they are safest to use with a suicidal patient. Tricyclics ---------- Common tricyclics include: Norpramin (desipramine), amitriptylene, nortriptylene, Sinequan, Elavil, Anafranil, Doxepin. The side-effects are the same as for SSRIs--supposedly more severe, but your mileage may vary. The tricyclics are generally more sedating than the SSRIs, and are often used as sleeping pills. They also tend to cause weight gain. Tricyclics are quite toxic in overdose, and there is a danger of accidental overdose, especially when used as a sleeping pill "as needed." MAOIs ----- "MAOI" = "Monoamine Oxidase Inhibitor." Common MAOIs are: Nardil (phenelezine) and Parnate. Side effects: Same as above, weight gain. MAOIs are safer for your heart than tricyclics, so they are safer to use with elderly patients or patients with heart problems. MAOIs may be effective in patients who don't respond to SSRIs or tricyclics. They are thought to be especially helpful for people who are very tired and numb when depressed and who can be cheered up/made more active by outside stimulation. They may also be more effective with "atypical depression," (more depressed late in the day rather than early, weight gain rather than weight loss, too much sleep rather than too little, etc.). The main problem with MAOIs is that they interact dangerously with foods containing tyramine (an amino acid). The combination can lead to acute hypertension (high blood pressure). This can be very dangerous and cause stroke, heart attack, or death, though such a severe reaction is rare. Symptoms of a hypertensive attack are severe headache in the back of the head, nausea, weakness, sudden collapse. A partial list of foods to be avoided is: cheese, yogurt, soy sauce, avocado, ripe bananas or figs, smoked salmon, cured ham, salami, pickled herring, broad beans. Caffeine and chocolate should be used with caution. There are also interactions with many drugs, and you should not take any medication (including over-the-counter drugs) without asking your doctor or pharmacist. Drugs to avoid include: antihistamines, decongestants, any cold remedy, codeine, amphetamines, Demerol and other narcotic pain relievers, some forms of general anesthesia. Because of these interactions with food and drugs, you should get a Medic Alert bracelet if you are on an MAOI. Other ADs --------- Some other antidepressants include: Wellbutrin ---------- Thought not to cause mania as much, but can make people quite hyper and nervous. Side effects are as for the others, with the addition of a significant risk of seizures in extreme doses. Serzone ------- Desyrel (trazodone): used mainly as a sleeping pill as it is not a very effective AD. Antipsychotics -------------- Also called "neuroleptics" or "major tranquilizers," these drugs have several uses in bipolar patients. One main use is to calm people down in acute mania, while waiting for a mood stabilizer to work. These drugs are also used (in low doses) as sleeping pills or to combat anxiety, and in higher doses for psychotic symptoms such as hallucinations, delusions, etc. They are also used in combination with a mood stabilizer as part of the maintenance medications used to prevent further episodes. The major antipsychotics are: Thorazine (chlorpromazine) , Mellaril (thioridazine), Stelazine, Haldol (haloperidol), Risperdal (risperidone), Clozaril (clopazine), Trilafon (perphenezine) Side effects are similar for all of these although some drugs (Mellaril, Thorazine) are relatively mild in their side-effects while others (Haldol) have severe side-effects for many people. The main side effects are: sleepiness, slowed speech and thinking, difficulty walking or with balance, restlessness, twitching, involuntary movements, confusion, stiffness If the twitching/involuntary movement/stiffness becomes severe, this can sometimes be relieved with an antiparkinsonian drug such as Cogentin. The major risk with these drugs is a condition called tardive dyskinesia--where the twitching or stiffness remains after the drug is discontinued. It is quite rare at low doses and when the drugs are not used for very long. Other medications ----------------- 1) benzodiazepines or "minor tranquilizers" These drugs are used to treat anxiety and panic attacks, or as sleeping pills. Common benzos are: Valium (diazepam), Ativan (lorazepam), ProSom (estazolam), Restoril (temazepam), Klonopin (clonazepam). Side-effects are drowsiness and nausea (rare) The main problem with these drugs is that they can be habit-forming, and people develop rapid tolerance (meaning they need higher and higher doses to get the same effect). It can also be difficult to get off a benzodiazepine because of withdrawal effects. Some doctors won't use these drugs for this reason, but most people will have no problem if the use is short-term. Benzos are much more gentle as sleeping pills than the major tranquilizers. *** 4.5 What "alternative" therapies exist, and are they any good? *********************************************** * Section under construction - BC * *********************************************** *** 4.6 How do I pay for all this? (Insurance-related issues.) *********************************************** * Section under construction - BC * *********************************************** *** 4.7 What are my rights as a patient? *********************************************** * Section under construction - BC * *********************************************** *** 4.8 What are my rights as a person with Bipolar Affective Disorder? *********************************************** * Section under construction - BC * *********************************************** *** 4.9 How can I tell my (friends, family, coworkers)? Should I? *********************************************** * Section under construction - BC * *********************************************** --------------------------- 4.10 Resource Organizations --------------------------- The Depressive and Related Affective Disorders Association; Johns Hopkins Hospital, 600 North Wolfe Street, Baltimore, MD, 21205. DRADA's email address is: email@example.com. Their WWW site: http://infonet.welch.jhu.edu/departments/drada/default DRADA's fax number is 410-614-3241. National Alliance for the Mentally Ill: 200 N. Glebe Road; Suite 1015; Arlington, VA 2203-3754. Phone: 703-524-7600. National Depressive and Manic Depressive Association: 730 N. Franklin, Chicago, IL 60610. Phone: 1-800-82N-DMDA. National Institute of Mental Health: has free brochures and information. Call 1-800-647-2642. Their Panic Disorder Education Program is at: Room 7C-02, 5600 Fishers Lane, Rockville, MD 20857. ------------------------------------------------------------------------------ 5.0 How do I help a friend or loved one? ------------------------------------------------------------------------------ Bipolar Disorder doesn't just affect the person who's diagnosed with it, unfortunately. In this section, we talk about some things that friends, family members, and loved ones can do to cope and help when someone they care about is diagnosed. ---------------------------------------------------------- 5.1 What to do (and what not to do) when someone you care about is diagnosed ---------------------------------------------------------- Twelve things to do if your loved one has depression, manic-depression, or some other mood disorder: 1. Don't regard this as a family disgrace or a subject of shame. Mood disorders are biochemical in nature, just like diabetes, and are just as treatable. 2. Don't nag, preach or lecture to the person. Chances are he/she has already told him or herself everything you can tell them. He/she will take just so much and shut out the rest. You may only increase their feeling of isolation or force one to make promises that cannot possibly be kept. (I promise I'll feel better tomorrow honey; I'll do it then, okay?) 3. Guard against the "holier-than-thou" or martyr-like attitude. It is possible to create this impression without saying a word. A person suffering from a mood disorder has an emotional sensitivity such that he/she judges other people's attitudes toward him/her more by actions, even small ones, than by spoken words. 4. Don't use the "if you loved me" appeal. Since persons with mood disorders are not in control of their affliction, this approach only increases guilt. It is like saying, "If you loved me, you would not have diabetes." 5. Avoid any threats unless you think them through carefully and definitely intend to carry them out. There may be times, of course, when a specific action is necessary to protect children. Idle threats only make the person feel you don't mean what you say. 6. If the person uses drugs and/or alcohol, don't take it away from them or try to hide it. Usually this only pushes the person into a state of desperation and/or depression. In the end he/she will simply find news ways of getting more drugs or alcohol if he/she wants them badly enough. This is not the time or place for a power struggle. 7. On the other hand, if excessive use of drugs and/or alcohol is really a problem, don't let the person persuade you to use drugs or drink with him/her on the grounds that it will make him/her use less. It rarely does. Besides, when you condone the use of drugs or alcohol, it is likely to cause the person to put off seeking necessary help. 8. Don't be jealous of the method of recovery the person chooses. The tendency is to think that love of home and family is enough incentive to get well, and that outside therapy should not be needed. Frequently the motivation of regaining self respect is more compelling for the person than resumption of family responsibilities. You may feel left out when the person turns to other people for mutual support. You wouldn't be jealous of their doctor for treating them, would you? 9. Don't expect an immediate 100 percent recovery. In any illness, there is a period of convalescence. There may be relapses and times of tension and resentment. 10. Don't try to protect the person from situations which you believe they might find stressful or depressing. One of the quickest ways to push someone with a mood disorder away from you is to make them feel like you want them to be dependent on you. Each person must learn for themselves what works best for them, especially in social situations. If, for example, you try to "shush" people who ask questions about the disorder, treatment, medications, etc., you will most likely stir up old feelings of resentment and inadequacy. Let the person decide for THEMSELVES whether to answer questions, or to gracefully say "I'd prefer to discuss something else, and I really hope that doesn't offend you". 11. Don't do for the person that which he/she can do for him/herself. You cannot take the medicine for him/her; you cannot feel his/her feelings for him/her, and you can't solve his/her problems for him/her; so don't try. Don't remove problems before the person can face them, solve them or suffer the consequences. 12. Do offer love, support, and understanding in the recovery, regardless of the method chosen. For example, some people choose to take meds; some choose not to. Each has advantages and disadvantages (more side-effects versus greater possibility of relapse, for example). Expressing disapproval of the method chosen will only deepen the person's feeling that anything they do will be wrong. -------------------------------------------------------- 5.2 What to do (and what not to do) if you suspect that someone you care about needs help, but resists seeking it for themselves. -------------------------------------------------------- First, re-read section 5.1. Now, re-read it again. :-) Okay. Now that you're back with us... One of the most frightening and frustrating aspects of this illness, for friends, family, and loved ones, is that many bipolar people resist seeking help. When you're depressed, you may not believe that help is possible... so why bother? When you're hypomanic or manic, you may well be irritated or offended when someone suggests that you need help. If the mania is euphoric in nature, then you don't WANT help... at least initially, it feels GREAT (though it's hell for the people around you.) Some bipolar people refuse to seek help for their entire lives. Others resist at first, but ultimately acknowledge that they cannot control this illness all by themselves. This happens for a variety of reasons--fear, mistrust, denial--but here's what it boils down to: If someone doesn't want treatment, there are only very limited circumstances in which it can be forced upon them. In most places in the civilized world, unless the person with bipolar disorder presents an imminent danger to his or her own health and safety, or to the lives of others, THEY CANNOT BE FORCED INTO TREATMENT. This is bitter medicine to take when you love someone and are watching them seemingly self-destruct. The hard truth is, you can't live someone else's life for them, as much as you might want to... and as much as you might think that what you're doing, you're doing for their own good. Another, related issue--what if the person that you're concerned about is seeking a form of help that you fear won't be useful? The vast majority of bipolar people who decide to pursue treatment utilize traditional, allopathic medicine and/or conventional psychotherapy as treatment resources; the outcomes in these cases are generally much more positive than if the illness is left untreated. However, this is by no means a universal truth. Some bipolar people pursue alternative therapies and treatments--either after medical treatment has seemingly failed, or due to a general mistrust of doctors and drugs. These therapies may range from outright quackery (Reichian "orgone boxes" and similar silliness) to therapies for which some interesting and promising anecdotal evidence exists (such as orthomolecular/nutritional therapy) but no studies conclusively proving efficacy have been published and reviewed. The outcomes in these cases vary widely... but if you *believe* that something will help you, often it does; the mind is funny that way. :-) Some bipolar people pursue spirituality as part of their treatment/coping regiment; others eschew it entirely. Again: as loopy as some of this stuff might sound, you can't live someone else's life... and the fact that the bipolar person is taking some responsibility for his or her own care is a very promising sign. A final note: If you're a friend, family member, or loved one of a person with bipolar disorder, you need to remember to look out for yourself. As much as you might love the person, don't let yourself become a financial or emotional victim. There are family support groups and other resources available to you: take advantage of them, and network with people who are in similar situations. See "Resource Organizations" for groups that meet in your area. ----------------------------------------------------------------------------- 6.0 Resources for education and support ----------------------------------------------------------------------------- This section details Internet, print, and other resources available to people with Bipolar Disorder and their friends and family. ----------------------- 6.1 Internet Resources ----------------------- Mailing Lists ------------- -- Pendulum (Mailing List) The "pendulum" mailing list is a support group for people who have a cyclical affective disorder (either bipolar or unipolar depression). Anything relating to mood disorders is fair game for discussion, including: o Lithium treatment: methodologies and side-effects. o Treatment with anti-depressant medications: tri-cyclics, Prozac, Zoloft, and the like. o Effect of MD illness on people you are close to. o How to deal with the strange things you may have done while under the grip of MD illness. o Dealing with mental health professionals, particularly, what to do when you come up against incompetence, and how to find a quality psychiatrist, psychologist, or counselor. o How to recognize the warning signs of an impending manic swing. o How to recognize the warning signs of suicide. SUBSCRIPTION POLICY: due to problems on the list in December 1995, the list has been placed in CLOSED subscription mode (i.e. the list-owner hand-processes each sub request). In addition, only subbed members of the list may post to the list, with a very few exceptions. There are several things the list-owner does to lessen the probability that dysphoric individuals bent on trolling, will pop on/off the list: o each sub request is held at least 48 hours before processing. o some potential subscribers may be asked in advance if they will observe certain rules, particularly with regard to use of alternate IDs, and use of automatic mail-handling (e.g. forwarding) software. o users of certain ISPs from which problems have originated, and account names which appear suspicious, may be asked for a real name, city/state of residence, and telephone number (to verify identity via directory assistance or direct query). If requested, this info is discarded within 2 months of subscription. Regular (non-3rd-party) un-subs are handled immediately by the server; there is no wait in that case. FOR THOSE CONCERNED ABOUT PRIVACY: please note that the Majordomo server allows users who are registered on this list, to find out the membership of the mailing list, via the server's "who" command. Since this list is typed "private", users not registered on the list cannot receive this information. Also, real names are never inserted in the list when sub requests are manually processed. If however, this is still of concern to you, notify pendulum-owner. To subscribe to pendulum, send a message to: firstname.lastname@example.org containing the line SUBSCRIBE PENDULUM (e-mail address) (To subscribe to the Digest form, substitute SUBSCRIBE PENDULUM-DIGEST above.) -- Walkers-in-Darkness Walkers-in-Darkness is a list for people diagnosed with various depressive disorders (unipolar, atypical, and bipolar depression, S.A.D., related disorders). The list also includes sufferers of panic attacks and Borderline Personality Disorder. Please, no researchers trying to study us, etc. (Postings are copyrighted by individual posters.) To subscribe to walkers or walkers-digest, send a message to: email@example.com containing one of the following lines: SUBSCRIBE WALKERS (your e-mail address) for the mailing list, or SUBSCRIBE WALKERS-DIGEST (your e-mail address) for the digest. -- MADNESS MADNESS is an electronic action and information letter for people who experience moods swings, fright, voices, and visions. (People Who). To subscribe, send a message to: LISTSERV@SJUVM.STJOHNS.EDU with this command in the body of the message: SUBSCRIBE MADNESS (first name) (last name) BIPOLAR DISORDER FAQ 1.1 - FILE 3 OF 4 Continued in Part 4...