Matters to Consider when Reducing or Coming off Meds

A collection of cut and paste posts that have arisen out of various discussions, here, there and everywhere.


To my mind, medication is a tool but it's not the only tool. The question we have to ask ourselves in regard to any form of treatment (medication or otherwise) is, "Is this helping me? Am I getting better?"

Many people identify medication as something that helps them but even those who find it helpful don't like to take it. They only do so because it makes their life better, more tolerable, more managable. This is true in spite of whatever side effects may be present. Other people do not find medication to be helpful or the burden of the side-effects outweighs the benefits. These people may find it beneficial to consider taking a different medication or to try withdrawing from that class of drugs entirely. To help you determine which avenue might be best for you, you could try asking yourself these questions...

• Do you understand why you have been prescribed your medication? (What is it supposed to do for you?)
  
• Does it have any positive effects for you? (Is it doing what it's supposed to do?)
  
• Does it have negative effects? (How is it not helping you?)
  
• What alternatives might be available?

Whenever people are investigating medications I like to encourage them to look at medically oriented sites and consumer based sites because this can provide a bigger and more complete picture than only one perspective. Here's two links to get you started:

• Medically Oriented Site
  
  
• Consumer Oriented Site

Exploring your answers to the questions above can help prepare you for meeting with your pdoc and discussing the issue with him/her. I suggest that for now, you continue with your medication as prescribed but start researching and exploring your alternatives. By the time you're finished doing that, you'll probably have a better idea of what treatment options might work best for you personally.

Whether your goal is to reduce your medication or come off it completely, it's best to do your homework first so you know what to expect. Other general rules of thumb that are practical to follow include...

• Reduce your medications gradually: The standard rule of thumb seems to be to reduce by 10% and then allow a period of time so you can make an accurate assessment in regard to function and symptoms.
  

• Find a supportive medical caregiver: Reducing or withdrawing medications also come with risks and it's probably best if you're working with a medical caregiver who can help supervise that process. Sometimes, it's also helpful to change the type of medication you take and you will need a professional to do so. For example, it may be easier to make small reductions if you are taking a liquid form of medication as opposed to a tablet form. It might also be helpful to temporarily supplement with medication from a different class of drugs for a short period of time, i.e., anti-anxiety medications or anti-depressants. If your current doctor is not supportive you would be better advised to find a new doctor to work with as opposed to trying to go it alone.

• Thoroughly research your medication including any known side effects of reduction or withdrawal: This way you'll know what sort of responses to expect and when you should alert your doctor to symptoms you are experiencing.
  

• Expect some discomfort: You're changing something, whether it's the reduction of a medication, the absence of a medication, or the introduction of a new medication. Your body will have to adjust to these changes. It can also be helpful to investigate alternative coping mechanisms. For example, if your most troubling symptom is anxiety, there are probably non-medicinal approaches you can learn that will help you deal with that as opposed to feeling you have no other option but to return to an earlier, higher dose of medication.

• Alert others in your immediate environment to your intentions: This includes spouses, family members, roommates, etc. Ideally, you'll have done your homework first so you can also let them know what they should be watching for and address any of their concerns. In turn, they can also work with you to help you assess your overall function and symptom management.
  

• Take it slow: Allow a period of stability in between each reduction so you can accurately assess function and symptoms. If you find you are not functioning well on a daily basis or your symptoms are becoming problematic, you can try holding steady for a period at that dose to see if you can adjust or you can return to whatever previous dosage you were at that did allow good functioning and symptom control.
  

• Respect what is happening in your daily life: Times of high stress are not the times to try and reduce or withdraw from medications. Likewise, if you have managed to reduce or withdraw you may find it necessary to temporarily increase your dose during times of high stress.

Most people are perfectly within their rights to reduce or withdraw from medications but there are smart ways to go about doing so and not-so-smart ways. As always, the critical issue is your personal safety and comfort -- if you don't feel right, if those around you can identify that you're not functioning well -- that's the time to get back in touch with your doctor for some follow-up consultation. Remember that psychiatric medications should never be stopped abruptly except in life-threatening situations such as neuroleptic malignant syndrome. Especially if this is the case, you will want to be under professional care.

The following links also contain information related to reducing or coming off medication. If you find them useful I suggest you share them with your support team.

• Ten Practical Considerations for Coming Off Medications
• The Icarus Project
• Rufus Mays' Website
• Beyond Meds

I came across the following at Rufus Mays' website and thought it was worthy of sharing.

I've come across that information before and feel that this fellow actually explained the process a little more clearly...

This is one of the reasons it can be so important to reduce slowly. Also, if you do have a worsening of symptoms it can be helpful to consider that it may be temporary. This is also why it's important to develop some non-medicinal approaches to coping with symptoms.

By the way, if anyone finds this information to be alarming, do bear in mind that for those who are moving toward full recovery, withdrawing from medication will occur at some point. The old face of schizophrenia might have been a paradigm of chronicity and a life-time of maintenance medication; the new face of schizophrenia is recovery. For many people, their recovery will include coming off medication.

There will be many others whose recovery includes medication but these individuals may find they're able to maintain daily function and control symptoms at a lower dose. It may be a taboo subject in some areas but usually, no laws are being broken when people attempt to find what works best for them.

See also: The Dopamine Hypothesis

The following may be useful to those who are taking or reducing their medications. It's written by Patrician Deegan, a psychologist who carries a diagnosis of schizophrenia. Dr. Deegan's story presents a useful portrayal of how to successfully use medications in your own recovery, including how to negotiate with your psychiatrist for medication changes. I've included only the bulleted points from her article. For the complete transcipt, click on the source link at the bottom of the quote.

There is also an information package that people can download and print to help guide them through the process of meeting with their psychiatrist or care team, and a chart to help organize medications and your personal response to same.

I've often shared the following with individuals who are in a recovery phase of their experience but it's worth emphasizing that caregivers often benefit from developing their own support teams and toolboxes. Forgive me if you've read it before -- it's a cut and paste.


Support Teams are comprised of people you find helpful and should include: Professionals; Family and Friends; Peers, and; Mentors. Each member of your team can address unique needs.

• Professionals provide medical and psychotherapeutic care and may include psychiatrists, psychologists, counselors, social workers, therapists, general practioners, nurses, nutritionists, massage therapists, etc.

• Family and Friends provide connection, meaning, purpose and are often in a unique position to provide vital feedback. For example, if you are taking a new medication your family will be very much aware if it is working for you. Or if you are beginning to slip into a depressive, manic or psychotic episode, they may well become aware of it before you do.

• Peers are especially important because, in my experience, they can often provide the best forms of emotional support and understanding -- they have been there; they have walked in your shoes; they know what it's like. Many people look to their family and friends to offer peer support but these people may lack the insight that shared experience can offer. They can also be so intimately involved and deeply impacted by your experience that they lack the ability to provide impartial support and may, in fact, require their own support team. The latter will be especially true for those who are in a position of primary caretaker.

• Mentors serve in a unique capacity because these are the people who inspire you to reach for your best. Mentors can be drawn from any other area of your support team (i.e. a family member can be a mentor) but more likely, they will be drawn from the larger world around you. It's not necessary that any chosen mentors also carry a diagnosis of any kind of mental illness; rather, they simply need to have been another human being who faced some enormous challenges and either overcame them or turned them to his/her advantage. If your support team does not have at least a few mentors on it, your team is lacking. One point worth emphasizing is that Mentors must be self-chosen. It's also worth noting that they needn't be alive; some of my mentors have included Helen Keller, Viktor Frankl and my own mother -- all of whom are dead.

Support Toolboxes are made up of things you (and members of your Support Team) recognize as beneficial and helpful. Support toolboxes can be quite unique because what we find helpful on an individual basis may vary considerably. They may include things such as education, exercise, medication, meditation, music, nutritional therapies, spiritual practices, personal journalling, etc.

A strong Support Team and a well-equipped Support Toolbox greatly increases the odds that if you're floundering in any capacity, you'll be able to find the person or thing that is most going to help take you forward. So, choose your team wisely and outfit your toolbox with care.

Another good article to add to the mix...