January 31, 2007

Coming Off Meds: Resources And Caution

A reader asks: "What I want to know [is] why guides to coming safely off meds are not widely available in the states?" Great question. Most likely because patients are not well-organized over here and because that's just not something most advocacy groups would ever do. In addition, there are all manner of legal issues for someone who publishes such information to consider, given our litigious society. What's more, each patient seems to respond to coming off a particular med differently. Interestingly, most docs don't know much about tapering patients either.

I think this situation is a big problem because a lot of patients who do come off med X or Y, for whatever reason, end up doing so on their own. In many cases, they cause themselves serious problems. God knows, I felt like hell coming off Lexapro and Risperdal. A buzzing neck and lightning bolts in the head are not much fun.

Anyhow, said reader offered this resource for information on tapering off meds. I cannot assess its accuracy, but pass it along for what it's worth to anyone.

Let me be clear on this: anyone coming off any medication should only do so after talking with their doctor. A doctor might try to talk you into staying on the med, etc., but if you put your foot down, then the doctor has an obligation to help you come off the medication. I am only talking about outpatient settings here, not inpatient. Different story there.

As a further caution, cops I know tell me that the mentally ill folks they really worry about having to deal with are those who have just come off their meds--not people who've been off meds for a decent time--as they can be highly delusional and highly combative.

Posted by Philip Dawdy at January 31, 2007 12:01 AM
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Comments

.."Interestingly, most docs don't know much about tapering patients either."

THIS is what consumers/patients need to get aggressive with, when talking to their doctors.

I had the general doc as well as my current psychiatrist both tell me to "just stop taking the Seroquel, it wasn't working anyhow."

After reading other sites on withdrawal (based out of the UK btw)I taught myself how to slowly remove Prozac, Trazodone and Zyprexa.(3 yrs ago) This process took me 6+ months. The only source I had was the internet anecdotal stories from patients to reassure me that my brain shiver, hands feeling like electric shocks, abdominal pain, confusion, sweating and insomnia were in fact WITHDRAWAL symtoms.

Currently my psychiatrist is being educated by me, with my daily charting and detailed accounting of what withdrawal experience is like, and that it is REAL and not a reason to start a med to counteract the withdrawal symtoms.
The psych was surprised when I told him no, I am not just stopping the med cold turkey. I think patients do not tell their docs these events, that can appear as flu-like symtoms, or headaches and the patient may not understand it is withdrawals.
I have also learned from personal experience it can take from 2-18 months to stop feeling transient withdrawal symtoms. That is another area docs tend to not believe. Symtoms CAN come and go over an 18 month period of time.

This is why it is so imperative that printed, and detailed literature accompanies the medication along with the prescribing information.
The pharmaceutical companies ethically owe this information to patients.
This is a part I have always found to be completely missing from those 6-8 week trial studies on med efficacy.
They do not go into any detailed description of WHY a patient left the trial, or how they felt once the 8 week mark was complete.
In all of my experience and hands on observation of various family members, including myself, the medications always cause problems (if they are going to) at the 8-12 week timeline.
That is when most trial studies stop. That is when most patients titrate down and go off of the meds, doc approved or not. IF a patient is aggressive in thinking, one will report all ESP as well as withdrawal symtoms to the FDA's medwatch program. Getting vocal is the only way the tables can turn.

Posted by: Stephany at January 31, 2007 09:02 AM

Everything Stephany said!! I, too, am educating my doctor and have only internet communities and a paucity of literature to go by. All resources are anecdotally based.

The most important thing I can say to anyone considering withdrawing is to inform yourself and prepare to tell you doctor how you want to do it. Do not rely on him/her knowing how.

I'm lucky to have a gracious doctor willing to work with me...but I'm the one telling him how to do it. Being on multiple meds, my plan is that it will take 2-3 more years. This is not something to mess with lightly.

Posted by: Gianna at January 31, 2007 10:29 AM

There's a book called "Coming Off Psychiatric Drugs" which may be helpful. Here's a link for it: http://www.mindfreedom.org/mad-market/coming-off-psychiatric-drugs.


I successfully came off of a psych drug called Stelazine in the late 1970s. I think the fact that I was very scared, and hence very cautious and gradual in withdrawing from it, helped a lot. Plus my dosage might not have been very high to begin with, but I don't really remember.

Posted by: Kent at January 31, 2007 10:59 AM

I couldn't agree more how shameful it is that so few doctors understand the chemical dependency and withdrawal issues associated with psychiatric drugs and the rebound (NOT "relapse"!) effects that can happen in the weeks and months after coming off that perpetuate the vicious cycle of diagnosing and treating with little to no chance of true healing. I would like to recommend Joseph Glenmullen's book The Antidepressant Solution as well as David Healy's protocol which is on the site www.benzo.org.uk where there is also useful information about coming off benzos and Z drugs (like Ambien). Essentially though without getting myself into too much hot water the protocol seems to be to get on to an equivalent dose of a similar drug with a longer half life (if needed) and then taper as slowly as you have to to prevent intolerable side effects. Every person is different and every person needs some kind of support and understanding while going through the process. There is a desperate need for experienced and supportive people, preferably professionals, to help with this. Almost no doctors, even if they are good at everything else they do, understand this process and they rush to re-medicate creating an ever worsening problem.

Posted by: Sara at January 31, 2007 11:23 AM

I have posted a withdrawal tip list on my blog for anyone who may be experiencing withdrawals; it lists some things that worked for me.

Posted by: Stephany at February 4, 2007 04:46 PM

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