May 27, 2009

Further Evidence Of Why Psych Med Withdrawal Must Be Researched

A little over a year ago, I wrote of Gianna Kali, author of the Beyond Meds website, and the horrible struggle she's gone through due to both being wildly over-medicated with just about every psych med under the sun and then by going through huge withdrawal problems. At the time, I made the point that psychiatry really needs to properly research how to properly get people off anti-depressants, benzos, antipsychotics and the like partly because it's a matter of fairness, partly a matter of human rights and partly because of the very practical matter that with 40 million or so Americans on a psych med of some kind there are going to be a decent percentage of people who'll need to get off a medication during the course of a year either because the medication doesn't work or because it's unsafe for that person or just because it's time for that particular person to be off that med. Here we are a year later and I see no progress on this front.

Science literally knows more about how to get people off heroin, meth and alcohol than it does Paxil and Effexor. And that's because withdrawal from the former have been adequately researched and because it's seen as a social good to get people off said substances while psych med withdrawal remains a taboo subject in the mental health industry--likely because doctors and other caregivers see psych meds as a social good and the underlying diagnoses people take them for as hard, accurate and fixed when there is good evidence of high rates of bad diagnosing afoot in the land.

I bring this up again for three reasons: One, Kali is going through withdrawal hell again, this time at the hands of an alleged detox center (read this recent post of hers for details); two, I'm sick and tired of hearing the ugly withdrawal stories such as I posted on yesterday much less bumping into people in real life who admit to me that they are hooked on Prozac or another anti-depressant and have been for decades despite numerous attempts to get off them; and, three, this site has a fair number of readers for the National Institutes of Health, the FDA, various other government health research agencies, numerous pharma companies and numerous research universities and I'm just wondering if some of you all can put your heads together, drum up some funding and get some research going on this matter. It's long past time for a STAR*D of psych med withdrawal to happen.

Or perhaps you'd like to explain to me why that doesn't make any medical or human sense.

Posted by Philip Dawdy at May 27, 2009 12:01 AM
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Comments

For those of you not familiar with my story, started tapering off of a 4 psych med cocktail in 2006. I am down to 1 med and expect to be off at the end of this year or in 2010.

With the exception of one med (Wellbutrin XL) which I essentially cold turkeyed, I have tapered the other meds at pretty much at 10% of current dose every 3 to 6 weeks. With Effexor and other drugs with a shorter half life, you may have to taper even more slowly. By the way, I wouldn't recommend a cold turkey but I did an experiment with Wellbutrin XL using supplements to get off it quickly as my insurance coverage was running out. Fortunately, it worked.

Tapering slowly doesn't mean that you won't have withdrawal symptoms that can be incapacitating. But by tapering slowly, I have been able to have some semblance of a life which I doubt I would have had following tapering schedules that most medical professionals would force you into.

How to taper slowly:

For meds that can be crushed (check with pharmacist), buy a .001g scale on Ebay that runs between $15.00 and $30.00. Then go to a place like Vitacost and buy empty gelatin capsules. You also need a pill crusher,

Crush the pill you want to made the reduction from such as a 10mg pill. Put in capsule and weigh it. Take 90% of dose and that the new amount you need to take. Put excess in storage capsule that most pill crushers have to be used for a future measurement.

By the way, with these scales, you might want settle for a range such as .193 to .195 grams as it is hard to hit the right number exactly and it doesn't seem to make a difference. Also, weigh it twice to make sure it is accurate.

For drugs like SSRIS, if you are at 10mg or under, using the liquid form is a great option as you can use a syringe to measure the amount. Here is a thread on the Paxil Progress Boards that might be helpful:

http://www.paxilprogress.org/forums/showthread.php?t=36443

Personally, I would be a klutz at this:)) but this option has worked well for people.

Another option is to use a compound pharmacist. They will make the doses you can't get at your local CVS pharmacy. The downside is that not all insurance companies allow you to do this and you may have to pay up front and get reimbursement later. I did this with Wellbutrin XL by the way and it worked great. Here is a link to find a local one:

http://www.findings.net/sucompounding.html

For people on a drug like Pristiq or Effexor, normally, I am totally against doing this for various reasons but switching to Prozac might be the best option since it is an easier drug to taper logistically. Also, the long half life vs. the short half life of Effexor might make it easier to taper.

If that doesn't work, using a compound pharmacy if it is financially feasible might work the best because of the difficulties in being able to customize the dose by yourself.

I have been criticized in the past by someone no longer on this board for writing this type of post because to quote the person, I didn't go to medical school. But I sure don't see psychiatry coming up with anything better and they continue to do the same old, same old with their way too fast tapering schedules. If I had gone by what my psychiatrist wanted to do, there is no doubt in my mind, it would have been too fast and I probably would be back on my meds.

The other criticism I hear is what I am proposing is too complicated for people. I am so bleeping tired of patients not being given any credit for being able to do things. It is just a bleeping excuse not to make things better and it needs to stop.

Also, this business of attributing withdrawal symptoms to a relapse of the person's illness is criminal. I have seen so many posts on boards that if someone has withdrawal symptoms, it means they aren't ready to come off the meds. Man, that is a big fat lie and needs to stop.

Finally, I realize that Gianna had all her problems in spite of mostly tapering very slowly. My heart goes out to her.

But for many people (not all), tapering slowly is the key to a successful taper. I am living proof.

Posted by: AA at May 27, 2009 01:58 AM

The definition of mental illness is that mental illness, all mental illness, even ptsd (genetic predisposition right dguller) is permanent and incurable and you should never go off of your drugs for any reason. If you keep harping on the remedy while buying into the bogus myth of mental illness you'll never have any relief.

Of course prozac is addictive. It's prescribed by doctors who tell their patients they have to take it forever or be irresponsibly "unhappy," "cranky," or whatever.

Posted by: Sally at May 27, 2009 04:28 AM

My experience has been that doctors don't believe in psych med withdrawal. I'm assuming they believe it's all in our heads or it's "symptoms" returning.

Posted by: David at May 27, 2009 06:26 AM

I would say that aprroximately 99% of physicians are still clueless about withdrawal.

The general public who have not taken psychiatric medications have no idea of this problem either.

The one case where physicians and the general public could have been enlightened by the dangers of withdrawal was the case of the shooter at the University of Northern Illinois which happened a little over a year ago. Six people were killed and there was a lot of media coverage of this school shooting.

Of course, the media barely mentioned that the shooter was in a three week withdrawal [which ocurred abruptly] from Prozac. Even those who were aware of withdrawal claimed that the Prozac withdrawal could not have effected the shooter because, gosh, it was Prozac. Shouldn't everyone know that Prozac has a slow half-life and couldn't cause any reprecussions during an abrupt withdrawal.

So we are back to square one again with psychiatric drugs and withdrawal. Some people even took the NUI case to mean that they could abruptly discontinue Prozac.

The first pamphlet ever put out by the Prozac Survivors Support Group in 1991 had this to say about withdrawal. "Warning: Do not abruptly stop taking most psychiatric drugs. Consult your physician. While psychiatrists are not usually warning patients about the dangers of suddenly stopping Prozac, some patients are having severe withdrawal reactions, including "Crashing" into depression with suicidal or violent behavior."

1991 - 18 years ago this was written. Think of that!

Of the 3,000+ cases on www.SSRIstories.com approximately 10% of them are withdrawal cases.
I am assuming that most withdrawal cases are not reported in the media because people do not understand withdrawal.

Yes, Gianna is a lovely person and it breaks a person's heart to read of her courageous 5 year struggle to stop using 6 different psychiatric medications. May God bless her and her wonderful family.

Posted by: Rosie at May 27, 2009 06:39 AM

You need to be especially careful of this method if you are taken bolus/extended release versions of a particular drug. These pills may contain more drug than you expect. This is probably more an issue for pill splitting, but be certain HOW much drug is in each tablet.

I'd stay away from any extended release formulations for titrations.

Posted by: Paul at May 27, 2009 06:48 AM

Peace be with you

With the poor help withdrawing is even harder. The government spends millions every year hunting down and drugging its victims, but nary a dollar on getting them safely off those drugs. I think the first commenter (AA) makes a lot of sense, and gave very useful information. I'm sure psych meds are like any other addictive drug and become harder to quit the longer you take them.

love eternal
tad

Posted by: tad at May 27, 2009 07:54 AM

Philip, you ROCK. It certainly doesn't make any medical or human sense.

Posted by: Deborah at May 27, 2009 08:34 AM

Thanks for spelling this out so well, AA. I especially like your reference to the "big fat lie" about withdrawal. You are so right that this needs to stop and professionals need to get real about withdrawal and how to do it. We don't need research as much as we do education and professionals willing to listen to patients who know what they're doing better than anyone else.

Posted by: Sara at May 27, 2009 09:30 AM

I wish I'd had this post when I was coming off Cymbalta. My docs tried tapering but their version of tapering was stopping Elavil cold turkey, stopping Lyrica cold turkey and reducing my Cymbalta prescription by 30 mg per week over a month. That's when I started talking to them about withdrawal from psych meds as a concern that they would need to deal with in their pain management practice if they were going to use psych meds instead of medication that actually relieved pain.

Posted by: Puckett at May 27, 2009 09:32 AM

..."I have been criticized in the past by someone no longer on this board for writing this type of post because to quote the person, I didn't go to medical school."

Because you didn't go to medical school?! That's too much.

But he or she still makes a good point for working with your physician when discontinuing these medications. That holds for any prescribed drug. The idea is to work hand in hand together as you did when starting a medication. Just going off on your own would seem to only invite trouble, personal circumstances allowing, of course.

Posted by: Annabell at May 27, 2009 11:00 AM

From the wonderful and inimitable Icarus Project: Harm Reduction Guide To Coming Off Psychiatric Drugs.

I'd think people would find it very useful.

See: http://theicarusproject.net/alternative-treatments/harm-reduction-guide-to-coming-off-psychiatric-drugs

Posted by: anon at May 27, 2009 11:50 AM

I've been doing this "right" for five years. Slower even then Breggin recommends even. The fact of the matter is 20 years of neurotoxins have kicked my butt and I have severe and chronic iatrogenic illness...

My blog in large part is providing information to help people do this WAY before I chose to and avoid such a catastrophic end. (and I'll add this IS NOT the end...but it's a shitty journey I wish on no one)

My about page has a ton of resources and many people write me daily about how I've helped them find the resources appropriate for them to find their way off meds. It's a different solution for everyone.

In any case...this will not be all in vain and if anyone is interested in a vast collection of information on safer withdrawal (vast may be an overstatement as Philip has accurately commented no one really knows what the fuck they are doing)

also I say safER because withdrawal always has risks.

However, in most instances, especially if one has not been on drugs for decades and if people are still relatively young there are many things people can do to minimize harm.

Again...my about page is a good place to start research and points to things on and off the web for research and support.

thank you Philip.

Posted by: Gianna at May 27, 2009 01:14 PM

"20 years of neurotoxins have kicked my butt and I have severe and chronic iatrogenic illness...

Is that a diagnosis or layman opinion?

It makes a difference to some.

Philip Dawdy replies: from what i know, that is a doc's assessment of the situation.

Posted by: the kids are all right at May 28, 2009 02:25 AM

Kicking Opiates is easier than kicking many psych meds, an opiate *taper* (not cold turkey) is somewhat uncomfortable, makes you a little sweaty, a little irritable, but nothing as horrifying as the physical and mental BS coming off a psych med can put one thru. And you know what to expect from opiate WDs, you don't know what to expect from a psych med taper.

Now staying off opiates once you quit is harder than staying off the psych meds. But you've got to think opiates at least offer some sort of perceptable change in your state of mind that one can find pleasurable, and (if you're not a completely out of hand junky)even useful to a certain extent (like suicide prevention. You don't want to kill yourself as much when you're floating on a "pink cloud".)
Psych meds on the other hand are impossible to predict. You never know if they are going to make you feel any better at all, and you're expected to go thru weeks and months of side effects with no perceivable benefit just to then have to go thru WDs to get off the med that didn't do anything for you in the first place. Yeah sometimes you get lucky, very lucky, and the med works well enough and the side effects are less or they become tolerable due to the benefit but usually you have to go thru at least a half dozen meds befor you find one that gives any benefit at all.
(and I am sorry but I honestly think that for people who find the 1st med and just about every med that has a low side effect profile for them is helpful, that it's mostly placebo effect. And I'm not talking crap about the placebo effect or saying thier symptoms weren't real. I think it is AMAZING that we can trick ourselves into feeling better just because we've been told by someone of authority that this pill we're taking is going to make us feel better. It just shows you that the brain does have more self regulation ability than we know how to conciously take advantage of. Really what I'd like to see is some real world experiments using placebos as the 1st line of treatment for people with non-life threatening mild to moderate cases of depression without suicidal ideation, or mild to moderate anxiety etc. Just tell them they're getting prozac and see what happens. If the sugar pills don't help at least as much as the actual drugs then stop the program, if they do work as well then keep doing it and spare people the health risks associated with taking a drug/foriegn chemical into their bodies. And then for those that the sugar pills don't work for in the 1st few weeks, switch them to a pill with an active ingredient. - I'm not saying this to piss anyone off, I just think with the evidence in ALL the studies done on things like antidepressants that show the placebo group does just as well as the active drug group, we ought to try it in the real world and see if it works here as well. Some people will still need to get on real meds to get better, but others may get lucky and only need a sugar pill and the belief that they can get better.)

In anycase I agree, it is completely wrong that we've spent so much money and time trying to understand the withdrawal effects of addictive drugs but ignore all others. I'd bet anything though that if herion and cocaine were still patented and commonly rx'd big seller medications in this day and age, and had somehow escaped the research done on them in earlier decades, that there'd be no attempt to do research now to understand the WDs from those drugs and how to safely and EFFECTIVELY get off them. They'd just do what they do with psych meds, try to taper you too fast, tell you it was your underlying disease showing up, that it was just in your head and we'd better get you back on this med befor it gets much worse. Maybe since opiate WDs have such a physical component it would be harder for them to convince people it was all in thier heads, but then again Effexor WD can be very physical and there's still no studies on how to get off that drug without the hell of full blown WDs.

What are you going to do? We live in a world where we draw the lines of what is and what isn't acceptable based on the proffitability of each approach and screw what the little guy has to say, if the complaint isn't coming to an agency or corporation thru a law firm then they probably don't even read it.

A lot of people have this attitude that we sue too much in the USA, I say we sue too little, especialy when it comes to the big corporations. There needs to be created a HUGE law firm available to any old average Joe, or a group of em, with a real problem worth sueing for caused by the actions of these big corporations. That way there will be at least one HUGE agency with enough lawyers and man power that they can stand a chance against these law firms employed by the big corporations. The settlements over Zyprexa have been PITTIFUL compared to the amount of money they made off thier corrupt marketing. How that happened I don't know, but it probably had something to do with thier lawyers being better and better funded than the states lawyers. Either that or some kickbacks were involved that we may or may not ever find out about.

Until these companies are having to pay out as much as they've made off whatever practice it is they're being sued over it's never going to stop. As long as they're making 10cents more by being corrupt than being honest they'll continue doing it. They know thier drugs cause withdrawals, they just do a good job of failing to doccument it so that they can claim ignorance should people ever decide to sue.

Posted by: katielou82 at May 28, 2009 10:40 AM

Effexor-- I ended up in hos for 4 nights cos of this drug-not a psy ward hos-heart racing at 140-normal for me is around 65-my tem up-terrible pains in body-rash-I ended up doing a crash withdraw--it was hell but doctor sedated me with benzo-My sister took this drug4 three weeks-WOW--she went near crazy-shouting-out bursts-my sister is normally in control and well good-Ive been on an ssri for about 22 years-I cant see me ever being-clean off-them-hardest detox-Smack was easy-methadom was easy-coming off a ssri is sheer hell-

Posted by: poodles at May 29, 2009 12:52 PM

I think people might need to be more careful getting on drugs so that they don't have to get off them as often. I struggled trying to live a semi normal self controlled life with bipolar disorder for 8 years. It wasn't until someone caught me filling the bathtub and setting up multiple electronic devices to take in with me, did I consider going on drugs. Finding the right psyc med wasn't easy but I am alive. Perhaps I might end up with some horrible disease from the meds later in life, but that still gave me that many extra years to live. Thanks to these medications I am now about to get married and start a family. Trust me I know that getting off of the drugs is tough but not nearly as tough as it was before the drugs.

If you plan to ever get off it, don't take it. Work through with therapy until your temporary problem is over. But if you have a lifelong issue like me, then you should know that the medicine trial and error is all worth it.

Posted by: joce at October 1, 2009 12:55 AM
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