i've been in xanax withdrawal hell for a week--after tapering since march 1st/ and being on the drug 9 years. first was going ok until massive insomnia,jaw pain, and facial swelling hit. felt like i needed to go to an ER of which i knew would be no help. ended up taking benadryl and got sleep, and to my surprise (didn't notice i am out of benadryl)the jaw pain and inability to sleep is back after gaining sleep the last 5 days. i've also noted that i've gained weight on the taper, as i did when i removed prozac.
i've equated the xanax to HELL withdrawals same as i did with Seroquel withdrawals. it's miserable, life alterting and scary.

"This is a human rights issue and a matter of fairness."
I totally agree.

Philip, my heart goes out to Giana. As an FYI, the Paxil Progress Boards recommends that tapering be done at 10% of the current dose every 3 to 6 weeks. The reasoning is that when you taper, it can take up to 2 weeks for withdrawal symptoms to show up.


I am using a digital jewelry scale which can be purchased on E-Bay to measure my Remeron cuts. Initially, I tried to simply just cut the pill by 1/4's since I feared using the scale would be a royal pain in the neck. But when I encountered horrible withdrawal symptoms, I realized I just had to "do it" as the Nike ad says.


I learned how to use the scale properly but then made the mistake of cutting every 3 weeks. Like everyone else who wants to get off these meds, I wanted to do it as quickly as possible while doing it safely. It finally occurred to me that feeling lousy 2 out of 3 weeks was simply not a good idea and my goal is to wait 5 to 6 weeks.


Most doctors would have had me off the drug by now and chances are I would be feeling horrific withdrawal symptoms which would be confused as a return of the illness. By the way, you might want to write an article as to how withdrawal symptoms are constantly confused as a return of the illness making people falsely think that they need the medicine for life. I can't tell you how greatly frustrated I am in reading articles by people like Richard Friedman in obviously confusing these issues.


Let me end this comment by getting back to methods for tapering. Many drugs like Wellbutrin XL, which only come in 300mg and 150mg strengths, can't be cut at 10%. When I was reducing this drug, I had my psychiatrist write a prescription for a 10% cut and took it to a compound pharmacist who will make the unusual doses that you can't get at your local drug store. If you want to locate one, click on this link:


http://tinyurl.com/h953r


There is also the water titration method that many benzo withdrawal boards advocate. I am not familiar with it but google it if you're interested.


Even though my slow tapering rate will have me completely off my meds in 2010 or 2011, I feel by doing it this way, I am minimizing my chances of having permanent problems. Of course, nothing is guaranteed but also by tapering slowly, I do have a better quality of life. Even when I didn't feel my best, I was able to work whereas people who taper too fast aren't able to even do that.


Great article Philip as I feel this is one of the most important issues you have raised. I just hope the people who need to be paying attention read it.

AA

Just a guess, but could it not be that when the operative assumption is that patients will require their psych meds for the rest of their lives -- because of the underlying operative assumption that psychiatric diagnoses are forever -- then no serious work has been done on how best to withdraw from them because it has not been expected that anyone would withdraw or want to withdraw from them? Or am I being just too cynical?

It is frustrating! When we were dealing with withdrawal after short term use, the members of my BP support forum all recommended protein supplementation - even drinking several protein drinks a day. But an alternative healing book says to support liver health, limit protein and fats (cholesterol is processed through the liver).

We were told to up our anti-inflammatory regimen (vitamins, etc.) and also told not to take any extra meds/vitamins.

We were told not to use tylenol (liver again) and also not to suffer from discomfort, it is important to be as comfortable as possible.

Is everyone just making this up as they go along?!!!

Stephany--getting off a benzo is horrible. I had headaches for months after my last dose (after a 4-6 month taper) , but they did eventually pass, for what it is worth.

One of the problems here that the medical world doesn't even interact with most people who are withdrawing, and very few after withdrawal. If you want to get off of drugs with medical supervision, you have to be very careful what you tell your doctor, and my guess is that precious few doctors would provide support. There is no incentive for anyone in the medical world to study this problem, and good luck to any researcher looking for funding for such work.

Unfortunately the Discussion Board of http://www.socialaudit.org.uk , which has a database of people testimonies while tapering is not open.
It would be of great help to show the hell the withdrawal is and how for some people it's impossible to withdraw.

One of your most powerful, informative and important "op-ed's" yet, Philip---well done. We should all share this with our own mental health care providers and ask them to address this issue and their knowledge and experience with medication tapering/withdrawal.

My only criticism is in regard to your comment about persons on an SSRI and/or other psych med for 10+ years being "drug addicts." That's a bit harsh in my opinion. I've been on Zoloft for dysthmia, severe PMS and anxiety for for 11 years now. It has helped tremendously and anyone who has lived with me, pre-Zoloft vs on-Zoloft, would definitely confirm that. I've never felt drugged, numbed or addicted. Zoloft has helped me cope with severe stressors in my life, depression and with the onset of menopause. Yes, it has frustrating sexual side effects but I have a patient and loving partner. Unless I feel that it's harming me or if/when it isn't working, I plan to be on it for the rest of my life. Certainly, I would prefer not to be on any prescription drugs, including the Aciphex I take for a hiatal hernia. Personally, though, those 2 meds have improved the quality of my life tremendously. I can work, play, function, eat and sleep and I'm grateful.

Btw, this is not some kind of endorsement of big pharma or the current medical paradigm. I'm as critical and as skeptical as you and others who post here. But I share my experience anyway. I also have great compassion for people like Gianna & Stephany as they struggle with medication withdrawal. I hope I don't have to go off of Zoloft because I can only imagine how difficult it would be.

Btw, I've been taking an extra dose of Vitamin D for a variety of reasons, especially given the lack of sunshine/brutal winter we had in Wisconsin---and with snow flurries in the sky today, too! Thanks again, Philip, for your blog and all of your time and efforts.

Geez..while i have compassion for anyone going thru a withdrawal from meds i am not certain that withdrawal methods should be determined by the pharmaceutical companies or even the FDA. I would personally like to see the psyciatric community develop what is called a 'gold standard' for treatment including withdrawl. My reasons for that - in psychiatric treatment the medication doses are tailored to the response of the individual and i personally think the practioner is the one who should decide that rather than drug company recommendations and governmental beaurocrats. As individual as the treatment is the withdrawal will be equally individual. In drug therapy there is a risk/benefit to consider when tapering, and in combination therapy you have to ask which drug is this patient benefiting from the most and which one the least. So many things to take into account. Do you add a drug with less potential for withdrawal symptoms and will reduce the symptoms of withdrawal for the drug you are trying to remove? Such as in the last comment... using benedryl for a short term. As far as how to taper? Again .. if its a life threatening adverse effect immediate withdrawal and support in a hospital setting is probably the course. Sometimes there wont be withdrawal at all but instead a new "lowest effective dose". Stuff to ponder.

I've managed to be off all my meds for a year, since March 15. I took three months to taper. As far as physical danger, my psychicatrist told me there wasn't any, although I didn't believe her. She just said that I will have to go back to the hospital and get ECT again, because this is always what she has seen in everyone she has ever worked with. Well, neither one has happened, but I have started smoking about a half a pack a day. Right now, I'm not as afraid of cigs as the crazy doctors. I wouldn't recommend cigs to others, however.

I had a very uncomfortable withdrawl symptom, which I didn't know what it was until I read about it a few months after it started. Sorry it's gross, but I had to run to the bathroom immediately after waking up, severe diarrhea every morning for several months, and a few painful and distressing instances of my bowels continuing to move after they were empty for hours on end, forcing me into a hot shower for four hours at a time a few times. This has dissipated gradually.

It helped to know that this WAS a withdrawl symptom.

I have felt better mentally at times, followed by feeling terrible again, which is discouraging, but common. It can take up to two years to overcome withdrawl symptoms and side-effects.

Strangely, I have held my current job for over a year now, which is a record for me holding any sort of job. I therefore don't think I was aided in functioning professionally by any of these psych meds. It hasn't been fun, but there it is. I seem less likely to say impulsive things (knocks on wood.)

I think they recommend people to have friends and a support system to go through this which I don't have. It seems like it could be possible anyway, as I have made it to this point. I'm so darn curious as to what I'm like with my considerable issues without any added or taken away by meds.

Dear Philip:

This post hits home straight to the heart for me. A few years back I went into a pretty serious tail spin. As with many times before in my life my medications just quit working for me. But this particular time it was especially bad. I had moved to a new area and had to get a new doctor that didn’t know me and my history of aversion and sensitivity to medications. At the time I was on very high doses of benzos, antipsychotics, antidepressants, and a mood stabilizer (some of these medications I was taking at levels far beyond recommended maximum doses).

I went in and told this new doctor they just were not working and I believed I needed to do a flush out and start over again as I had done enough times in the past. Once you have that kind of cocktail in your system in my experience it’s just about impossible to gets life back in chemical balance until your cleaned out and can face one drug reaction at a time. Of course not knowing me and being the virtual egotistical pricks that they are, they just upped my already high levels of medication and added a couple to boot. This only made matters more problematic I was still in a deteriorating tail spin as my life was had come to all but a screeching halt as far as being functional in everyday life. So out of complete and utter desperation I fired that doctor and got another with the same frustrating results; (I even tried to get hold of my old doctor that had proven to be somewhat competent, and was very aware of my medication situation, and showed a nice level of compassion and caring since we had worked together for years as a team to keep things in a functional balance) since at the time I was in an HMO Health Provider That begins with a “K”. But my trusted doctor was gone out on maternity leave and I was stuck in the throes of medication, HMO, and doctor hell. I was taking massive amounts of these medications and I was headed toward the bottom more rapidly and quicker with each passing day. So I fired another doctor, and demanded I get the doctor who headed the department to handle my case. I explained my desperate situation, how the medications were not working, and adding higher doses and more medication had just made my condition and situation abysmal. I told this doctor I was coming off these medications one way or another, and asked if they were going to help yours truly since they were the ones responsible for getting in this medication quagmire in the first place. Their response and only expressed option was to put me in a daily drug addiction program for addicts while I came of my medications. This would have meant sitting in daily addiction meeting for weeks, peeing in a cup each morning, and participating in addiction groups when I was in all rational fact and reality not an addict. I just shook my head and told this idiot I was taking my medications exactly as prescribed and was not an ----- addict and expected to be treated with the same dignity and ethical standards any other patient would be with a physical medical condition. I just needed to get these drug cleared out of my system before starting over with possibly other medications that might have the potential of working in the short term at the very least. But they were adamant that I the only way they would help me come off the medications they prescribed me was to enter an addiction program and be treated not as a mental health patient, but as an addict that I was not. I was in what you call HMO purgatory, I was headed toward the bottom at light speed and they were trying to label me an addict to cover up their own frigging mistakes and asses.
So I had little choice but to go home and lock the doors to detoxify myself off all these medication with precisely no outside help. I literally went through the depths of hell itself. After a little over a month of hitting every emotional and psychical boundary I had ever known and beyond; I was finally able to reopen that door and reenter the world again clean of all medications; though it took me mouths to actually feel whole and truly functional once again in my life. I was very fortunate not to have died during this process to be quite honest. I would not recommend or suggest anyone try this approach to getting off medications. It was actually a medical health care crime that I was forced into making that choice. I surely found out that once these doctors have you on that medication merry go round, they have no intention of ever letting you off. It’s been years now since that painful incident; and I still to this day get weepy eyed and emotional struck when I think about how horrible the pain I went through was.
I will never forgive the mental health medical profession, the incompetence of care, or that HMO for what they put me through. I know if this happened to me, then it has happened to hundreds if not thousands in the same situation. We have an uncompassionate and ingrained model these witch doctors follow, this excludes any humane or rational when it’s come to patients with mental health issues. If I would have had any physical medical issue I would have been never treated this way. But because we are label mentally ill, I received a completely different and a recognized automatically lower standard of care.
I’m pretty much medication free today and plan to stay that way no matter what bipolar throws at me. After going through that detoxification and surviving; I figure I can just about handle any manic or depression life can throw at me now. Do you trust the doctors ethically bound for your care and well being? You shouldn’t! They have another agenda that they consider much more important than your medical care and health! That’s not some fictional account or extreme opinion, but actually just plain unadulterated fact. I am living proof, a victim, and witness to this travesty in my own life and experience.

Yours truly
Stan

great comments all. so you know, i was being rather flip with use of the term addict, but i do know long time ssri users who certainly describe their experience that way.

stan, kaiser messed me up many years ago. i wish you luck dealing with their terrible system and docs.

The troubling thing about these withdrawals, is that we seem to not have a choice in just walking away from the meds w/out repercussions.

It would be simple to think, "I don't need this any more", and go off of it and go about daily life.

But in essence it strips us of choice; it places us in life long chemical warfare within our bodies, ending up possibly disabled, severe bodily damage (such as Gianna's adrenal exhaustion not good news)and possible metobolic syndrome.

I personally feel right now that I am disabled.

There is NO way I could go to work today, or last week at all. I feel the worst I've ever felt, and I thought I'd felt it all coming off of Seroquel.

My 9 year run on Xanax I fear, has ruined my metabolism, and my life basically.

Not one doctor can tell me it's a return of symptoms: because my anxiety that I started taking Xanax for (stupidly)did not have these symptoms:

1.nausea 24/7
2.extreme fatigue
3.loss of short term memory
4.severe back pain
5. muscle rigidity
6.brain fog, stupor upon wakening
7.severe facial pain
8.severe swelling, puffiness,facial swelling
9.blurred vision

There are more, but yes, I feel like a junkie.

Tremors that cause my hands to shake while I dig for Benadryl, which pisses me off that I look for another drug to combat these withdrawal symptoms, and my ONLY hope is that I will recover because I did from Seroquel and Prozac withdrawals.

This one is different. It's a whole new beast; and I think it's because I've been on this drug nearly a decade, and the others were only a few months (and still had massive withdrawals).

This is not "psychological dependence"; not when your physical body is suffering to the point of disability.

I feel like an addict...an accidental addict perhaps but an addict nonetheless.

Thank you so much for helping to bring light to this issue Philip.

Cheryl Fuller said:
Just a guess, but could it not be that when the operative assumption is that patients will require their psych meds for the rest of their lives -- because of the underlying operative assumption that psychiatric diagnoses are forever -- then no serious work has been done on how best to withdraw from them because it has not been expected that anyone would withdraw or want to withdraw from them? Or am I being just too cynical?

I think that's right on Cheryl. My husband today was wondering if a class action lawsuit might not be applicable stating that the pharmaceutical industry has been negligent in not finding out the dangers of discontinuation. I think the reason they've never bothered is exactly because they WANT patients for life and want to promote the myth that meds are required for life.

I'd love to sue but I don't think anyone would take the case. Most "authorities" would back the lie that the drugs are needed for life and that most people don't suffer withdrawals because the are withdrawal symptoms are most often considered the "disease." In other words our experience of withdrawal illness would be denied.

I'm nearly speechless. This is a great and very important post. I believe this is the most insidious undercurrent in mental health treatment today. And I agree it's something totally separate from whether meds are appropriate (effective?) or not as treatment.

Stephany, I hope this question isn't out of line. I'm just curious if you considered a cross over to a longer acting benzo (like Valium) in order to get off Xanax which has such a short half life making withdrawal very difficult.

Philip, thanks as always.

My son's experience in going off of abilify was very difficult for him. The docs saw his 'withdrawal' behavior as proof that he was indeed bipolar and needed the aap's. I went against their advice, and almost five months since his last dose of abilify (after tapering for about 7 mos), I really don't think he meets a single criterion for bipolar.

The medical community would be smart to learn from those of us who have managed to get off the psychotropic medications. They could actually learn different ways in treating addictions (all addictions)and actually help this community. But that would mean change and acknowledgement that there are dangers in treatments. So It is best for them to deny this as a real problem and continue to blame the patients.

This is a very important issue, and one that has not received nearly enough attention. I am having problems coming off of trazodone, which four different doctors assured me was a "benign" drug that would do me no lasting harm. I'm reducing the dose slowly, allowing a few weeks between reductions, but I'm getting headaches, insomnia, and suicidal thoughts. If I'd been told how difficult it would be to remove this drug from my system, I'd never have started taking it.

Sara, AA, Gianna, Tilting windmills, et al:
I appreciate all of the advice and have taken notes on all of it. Sara, yes someone suggested Valium as a crossover to get off of Xanax, and my pdoc is willing to do whatever it takes to aide me in this withdrawal(which is GOOD news).It's a matter of trying to figure out a plan in the midst of inability to keep a thought longer than 2 minutes.

I agree, this is a mandatory article that needs to be linked up everywhere--because--of the new age of antipsychotics entering mainstream basic dx arena use.

People have no idea what is in store for them, when they go to a doctor for "the blues" and walk out with an antipsychotic!

Talk about Atypical Nation: on Withdrawals!

Ive been on or another SSRI for 16 years--I feel like a drug addict-really I do-

Ive switched back 2 prozac from Zoloft--Zoloft withdraw was shite man-felt worst than when I came off methadom all those years ago-

I will hug the prozac for a few months then chatter 2 my Doctor about how 2 taper it down--as 4 Seroque-thats a main stay just now-will deal too that another year.Baby steps coming of these psy meds..In NZ I still have psys telling me these drugs are NOT attictive-.>

I dream about that class-action lawsuit happening in my lifetime too. Message from Icarus:

Robert Whitaker, Pulitzer-nominated author of Mad In America, is working on a new book about psychiatric diagnosis, recovery, and the disability system.

He's looking to do interviews and gather stories that detail how people came to end up with a psychiatric diagnosis, what they were told about the nature of their "illness," and then whether they believe that the treatment they have received has facilitated recovery or not.

You can contact him directly at: robert.b.whitaker AT verizon DOT net