As more and more people are on SSRIs for longer and longer periods of time, there are increasing numbers of people withdrawing from SSRIs who have taken them for 10–20 years of cumulative exposure. Some are stopping because they lost their insurance benefits. Some have felt well for years and assume that they are cured. Some retirees looking to cut down on expenses think that this is a good place to start.
Particularly after long-term use, the resulting akathisia can be severe and disabling. It is excruciating, and patients are so visibly anguished. Sometimes reinstatement or trying other medications helps a lot, and sometimes any medication seems to make things incrementally worse.
What I refer to as tardive akathisia is far from a perfect description. The tardive part is accurate, and refers to the late onset of symptoms, although these same symptoms can start immediately after stopping or sometimes during ongoing treatment. It seems that the worst conditions are those that emerge — often suddenly — around three to six months after stopping.
The timing of tardive akathisia is similar to that of tardive dyskinesia, tardive akathisia’s better known sister illness. Tardive dyskinesia is also noted to occur from SSRIs. Both are movement disorders related to medication-induced dopamine abnormalities that have tardive or late onset.
Akathisia is primarily a movement disorder. However, not everyone with what is called akathisia from SSRI withdrawal has the classic akathisia with pacing and/or intense inner restlessness. Patients have a very hard time describing what they feel. Often patients become quiet and look at me with a frightened, desperate look when I ask them how they feel, because they feel bad enough that suicide might be needed to escape the discomfort — and they don’t want to tell me this for fear that they will be involuntarily hospitalized.
Anxiety is the best description patients use to describe the dread and anguish they feel; less often it is described as severe depression. Mostly patients seem unable to really put to words the intense suffering they experience. It is an anguish that seems to be neither anxiety nor depression. The severe and persistent set of symptoms of the SSRI withdrawal syndrome needs to be further defined and needs its own name.
How many ticking SSRI time bombs are out there? Hard to calculate how many people are at 15 years or more on these drugs. My practice is small, and over the last year I have seen three patients with “tardive akathisia” who chose to see me because I was close to where they lived and took their insurance, and know nothing about my subspecialty interests. This suggests that this may well be a common problem.
I have also seen akathisia in patients who were on a single SSRI for long periods of time and then developed intractable problems during the transition to another SSRI. Some so-called “treatment resistant depression” appears to be related to SSRI dose reduction.
After 15 years, most — but not all — people are going to have serious symptoms when stopping SSRIs and SNRIs. There are people who are able to stop these drugs (even after long-term use) with minimal tapering and yet will have no discernible problems. Many people are going to have transient, mild to moderate difficulty and some are going to end up falling down the akathisia rabbit hole. That is a long, difficult drop.
I want to shout out to James Moore who so aptly notes the aloneness of SSRI withdrawal. People who have lost their jobs and relationships may receive no acknowledgment from mental health providers or family that their condition is due to stopping SSRIs. The public and mental health professionals are not familiar with tardive akathisia. It is bad enough to suffer from withdrawal akathisia, but the problem is compounded by well-meaning family encouraging the patient to seek more drugs and by possibly well-meaning psychiatrists who deny that such withdrawal symptoms exist. The patients often have no support from their family or their psychiatrist and are encouraged to take more drugs which often just make the problem worse.
Treatment of SSRI withdrawal toxicity is difficult. I also want to shout out to the online benzodiazepine support groups, and make a request. Medicine is filled with difficult choices, and I ask that the benzo community consider withdrawal akathisia as a possible valid indication for the drugs. For severe akathisia with suicidal ideation, benzodiazepines can be lifesaving. Other medications are generally far less effective for these severe problems and run the risk of causing further damage.
Reinstatement of the SSRI sometimes works, but it also might not work, or it might make things irreversibly worse. Benzodiazepines almost always provide symptomatic relief. Sometimes high doses for long periods of time are needed. More often they can be used at intervals of no more than twice a week long term without becoming dependent. The only medications that reliably seem to make withdrawal symptoms tolerable so that the person no longer need consider suicide are the benzodiazepines.
Outside of using any chemical, if the condition is tolerable and even slowly improving, the best strategy is to wait. Healthy living (diet, exercise, relationships). Improvement generally takes months or sometimes years to get back to a baseline.
Speed of tapering is generally best done slowly to reduce acute symptoms, but I am finding that even exquisitely slow tapering may not alter the course of late-emerging symptoms. Still, speed of tapering is really one of the only strategies available to mitigate withdrawal emergent akathisia.
My current approach is to taper so slowly that there are minimal to no withdrawal symptoms throughout the tapering. Compounding pharmacies can make dosages to allow for very slow tapering. Also, quite a few SSRIs come in liquid form which makes it easier to measure doses for a slow taper. Effexor and Cymbalta are in beaded capsules which allow for very slow tapering by opening the capsules and taking out some of the beads on a schedule.
For people who have been on the drugs for less than five years, my basic starting point is to drop 10% every month or two until halfway, and then 5% the rest of the way. If the first 10% cut results in any meaningful symptoms, then I usually recommend reinstating until stable and then restarting half as fast. Similarly, if 5% is too fast it is reinstated to the original dose until comfortable, and then we might try 2.5%. If there are significant withdrawal symptoms despite cuts of 2.5% every month or two, especially early on, I advise fairly quickly to reinstate to the original dose rather than to wait very long to try to accommodate. This degree of sensitivity has a poor prognosis for tapering. Prompt reinstatement seems to avoid the more severe withdrawal symptoms. With slow tapering and close monitoring, severe withdrawal syndromes can be avoided by quickly reinstating. Unfortunately, this may not allow the patient to stop taking the SSRI.
Because these are only my observations and not the result of controlled research, my recommendations need to be considered in this perspective. The very real problem of persistent, intractable SSRI withdrawal is best avoided. Any attempts to reduce dosage, particularly after 7–10 years, should be done very slowly with prompt reinstatement if withdrawal symptoms develop that are particularly uncomfortable.
For patients on SSRIs long term who are having new problems with anxiety or depression and seek a medication treatment, it is probably a better idea to keep the old medication and add on new ones than to try to taper the first medication while adding in the new medication. Currently I am in favor of a tapering schedule so slow that there are no withdrawal symptoms at all, if possible. If serious withdrawal emergent symptoms occur, a benzodiazepine offers relief and can be lifesaving. Although there are no fixed rules, once long-term akathisia-like withdrawal symptoms occur the recovery is best measured in years, not weeks or months.
As long as the general trend is improvement, then one can expect that over time there will be complete recovery. If a year has passed with no trend toward recovery, experimentation with other medications becomes a more reasonable strategy — however, the patient runs the risk of further deterioration.
This was almost a great article. Pop-quiz: What is the problem with the following statement? :
“For severe akathisia with suicidal ideation, benzodiazepines can be lifesaving.”
I don’t see a problem, but I’m aware that others do and with good reason: what they experienced with benzos, or what they’ve seen others go through.
I saw Dr. Shipko after almost two years of nearly unbearable post-Ritalin, post-Effexor brain damage. It might have included tardive akathisia of the kind Theodore Van Putten calls “mild akathisia” in which “patients may sit without moving a muscle.” I did that almost all day. I didn’t even lean back; there was no relaxing whatsoever, ever. (I’d had the full-blown kind of akathisia for weeks in the past – horrendous, and not understood for what it was by the idiot MD who’d chosen and prescribed the drug that caused it.)
Mild akathisia was the least of it in the post-drugs period. It was hell is what it was, with constant battering feelings of doom and horror and a very strong desire to be dead. For a year and a half I barely talked to anyone, because all I had to say was “I can’t stand this another minute.”
I didn’t want to kill myself. I did want to be struck dead. For every completed suicide, God only knows how many there are like me. I disavowed suicidal ideation, but that state of being should be coded as an outcome that’s every bit as bad as suicide, but it isn’t. When there are no thoughts of killing yourself, there’s no name for it.
I endured it for a year and a half before going to a doctor. A prescription for ten Ativan pills of .5 mg each, written by a cautious doctor who shared my worry about replacing one terrible drug with another, was a turning point. I fell asleep. I slept. I would have loved more but Dr. Shipko only meant it for short-term relief from what I complained of. Next appointment, I asked if he thought I could have more. He didn’t leap at the chance to prescribe it again, so I did without.
It helped a lot to have experienced something other than a pounding hell that didn’t get the least bit better for18 months. It boosted my morale. I was finally better a few months later after embarking on an almost-ketogenic diet featuring coconut oil and no sugar or flour.
Dr. Shipko,
Thank you for your continued contribution to MIA with your articles about managing the complex nature of SSRI dependence, withdrawal, toxicity, etc. I always enjoy reading your entries.
First, I just want to ask why you settled on 15 years as the chosen time-frame?
Second, this comment “I also want to shout out to the online benzodiazepine support groups, and make a request. Medicine is filled with difficult choices, and I ask that the benzo community consider withdrawal akathisia as a possible valid indication for the drugs.”
We, the benzodiazepine community, have the same aloneness in the wake of losing everything. Everything.
We have the same suicidal ideation and action. We look at our doctors desperately afraid and don’t tell them we want to die either for fear of institutionalization.
We are even more scared than SSRI folks because our drugs are controlled substances and we’re constantly blamed for our misery and called “drug addicts”, or worse, our drugs are refused and we’re not allowed to complete sane tapers.
We have the same akathisia and tardive akathisia. (I called mine “delayed withdrawal” when it happened)
We suffer the same “anxiety” and “despair” and “depression,” in quotes because there’s no words that explain the horror or do it justice. (I haven’t met many SSRI patients who were cut off from their drugs, refused a taper and called drug addicts)
In other words, I saw my own benzodiazepine toxicity situation in what you just described for SSRI patients. Have you seen this study (Cochrane) that concluded the withdrawal reactions from both were similar: http://onlinelibrary.wiley.com/doi/10.1111/j.1360-0443.2011.03686.x/abstract
I think the reason the benzodiazepine withdrawal support community (myself included) has a problem with this is because you have previously made statements indicating that you don’t think benzodiazepine withdrawal is as serious or severe as SSRIs (please correct me if I’m mistaken on that as I do not wish to misrepresent you).
Many of us, myself included, have experienced severe and life-devastating withdrawal from benzodiazepine discontinuation which included the same akathisia you describe here (mine started at 4 months post cold-turkey from benzodiazepines. I wasn’t taking any SSRIs). Our comrades in the support groups we are members of have jumped out of windows, off bridges, hung themselves, shot themselves and drove their cars into concrete barriers on the highway. So, yeah, we’re a bit wary of a benzodiazepine as a solution since it’s outcomes can be equally horrific and aren’t much different from what you just described, so we logically wonder if you’re setting these people, who already have SSRI toxicity, up for more horror down the line. How long will you leave them on the benzo at the same dose? Will they develop tolerance? Will it be recognized as benzo tolerance?
Also, I took issue with in another article you wrote you seemed to overlook that the benzodiazepine withdrawal must often be handled with great care as one can become physically dependent on benzodiazepines very quickly (a week or a few) in some cases. If someone is initiated on huge amounts of Valium (I think it was 100mg in your case you presented?) and then dropped to 60mg (a 40mg “cut” or 40% of the dose), it is very possible that the huge drop in dose resulted in benzodiazepine withdrawal and suicidality your patient had (not to mention what contribution ‘kindling’ might add since there is already SSRI toxicity at play). There’s also a chance of a paradoxical reaction to benzodiazepines or a worsening of the SSRI toxicity condition.
That said, if someone is on the brink of taking their life, there has to be options offered, so I appreciate the rock and hard place. However, the patient should always be given informed consent (and not a watered down version about how severe and disabling benzodiazepine withdrawal/toxicity can be) as well as the opportunity to do the same microtaper techniques from benzodiazepines as they do from SSRIs (that you discussed you were having success with in another article you wrote for MIA) when it’s time to discontinue the benzodiazepine.
I am 5 yrs off of benzodiazepizes, but have been in w/d from them for 7 yrs because of a failed reinstatement attempt 4 months after the CT (I was on two at the same time and Ambien, all prescribed by a negligent psychiatrist) and I am still largely bedbound from that benzodiazepine cold-turkey (there are reports of 10,12 year healing times as well both online and from the withdrawal charities in the UK), and I believe you think that’s not possible, that the withdrawal from benzodiazepines is much easier, doesn’t last long, etc?
Lastly, it is my opinion that the taper plans presented in your book for how to withdrawal from benzos would seriously maim some people. Many on benzodiazepines have to do a many years long microtaper (very similar to the one you described in one of your articles here on MIA that you were attempting and that kept your patient functional) in order to not suffer horribly and to remain functional.
So, I guess…the benzo withdrawal community would probably like to shout out to you to stop minimizing benzodiazepines and the toxicity that results from them, as it’s equally as horrific as what you just described here for SSRIs. And I guess the question is…when does the ride through psych drugs end? What if the withdrawal from benzos given for SSRIS is as equally as horrific, then what drugs do they get initiated on to get off the benzos and on and on…
Everyone would be best served if patients on these drugs long-term were tapered extremely slowly from the jump (or the drugs, so they aren’t ever in a place where they’re so ill they need a drug to survive the toxicity of the initial drug that they were CT’ed from or told to reduce too rapidly. Of course, there’s a million other solutions too like informed consent and prescriber education, etc – but I’m not holding my breath. Thank you, again, for your contributions.
Sorry for any errors. Benzos also result in severe cognitive impairment (for the first few years off of them I couldn’t complete puzzles designed for 5 year old children)
The last paragraph should read:
“Everyone would be best served if patients left on these drugs long-term were tapered extremely slowly from the jump, so they aren’t ever in a place where they’re made so ill they need a new drug to survive the toxicity of the initial drug that they were CT’ed from or told to reduce too rapidly.”
Thanks, Cole, for your refutation of Dr. Shipko’s benzo stance.
As another benzo/SSRI/SNRI/’mood stabilizer’ merry-go-round survivor, trading one evil for another should not be the protocol.
Benzos kill. As do SSRIs/all brain drugs. And kindling is a real thing…polypharmacy is rampant in our present system of ‘mental health’ care.
O for the ever elusive ‘right combination’ of meds to ‘fix’ our ‘chemical imbalances’…
This is an example of how psychiatry contributes to our overdose epidemic, as I discussed in “Death by Placebo”. Sure, getting people high/wasted on benzos seems to solve all their problems in the very short-term, but it leads to much worse problems in the long-term. And every time a prescription for benzodiazepines is filled, there is a good chance that a child of the prescribee will get their hands on these pills, and will develop their own habit, or maybe it will be their or their friends’ gateway to opiates. And people who have bottles full of benzodiazepines are more at risk for acting on suicidal thoughts, partly because benzodiazepines can disinhibit people who may thus give in to their impulses, and partly because they have an easy means to commit suicide, just by taking all their pills. It’s like carrying a loaded gun.
It’s actually quite difficult to OD on just benzos.
from Wikipedia:
The oral LD50 (lethal dose in 50% of the population) of diazepam is 720 mg/kg in mice and 1240 mg/kg in rats.[19] D. J. Greenblatt and colleagues reported in 1978 on two patients who had taken 500 and 2000 mg of diazepam, respectively, went into moderately deep comas, and were discharged within 48 hours without having experienced any important complications, in spite of having high concentrations of diazepam and its metabolites desmethyldiazepam, oxazepam, and temazepam, according to samples taken in the hospital and as follow-up.[68]
Overdoses of diazepam with alcohol, opiates and/or other depressants may be fatal.[67][69]
They were considered to be much safer than barbiturates when they came out in the late 50s and early 60s…see “Mother’s Little Helper”
@humanbeing you are correct. Benzos replaced barbiturates due to having a much higher safety index and the fact that it is extremely difficult to overdose on them unlike the old school barbs. Overdoses from benzos alone are extremely rare. It’s when they are mixed with other sedatives that they become dangerous
Thank you, Cole for your rebuff of Dr. Shipko’s article. As an iatrogenic illness survivor, I couldn’t agree with you more! Reading Dr. Shipko’s words made me physically ill. 🙁 As someone who was prescribed psychotropic meds out of the realm of psychiatry, and who personally suffers with akathisia, the idea of taking benzos to quell someone’s akathisia, ‘tardive’ or otherwise, seems totally abusive and ludicrous!
He might consider niacinamide, as it has anticonvulsive and antipsychotic properties and goes to the same receptor sites as the benzos and isn’t addictive, unless you consider pellagra a form of drug withdrawal. You’d have to use gram (or more) doses, but if your patients were screened properly, their main danger would come from the wrath of psychiatrists that you weren’t using powerful drugs to cure a “nonexistent” addiction.
Bravo.
@Cole Wow you all drastically misunderstood the concept. The doctor was referring to short term use NO MORE than twice a week at low doses to offer temporary relief. That is how the drugs were meant to be prescribed NOT for daily use. He is prescribing benzos the correct way. If you got addicted bc of neglectful doctor not educating you properly that isn’t the author’s fault nor does it make what he’s saying mean the same thing as your case. You are trying to act like post ssri withdrawal isn’t as serious and that is exactly the ignorance and misinformation that a lot of doctors have. This is why they continue to be handed out like candy when in fact they are mind altering drugs that severely effect the body in ways one can’t even imagine. Zoloft, for example, activates MAP4K4 and JNK. Zoloft is the only one studied for that, but I think it’s safe to say if one SSRI does that then there is a good chance others do exactly the same. That is very serious. That is the same activation seen in certain types of cancer. So benzo withdrawal is serious, but to say it is much more serious than SSRI withdrawal couldn’t be further from correct. Psych drugs are dangerous period.
Thank you Dr Shipko,
I think the slower the better!
humanbeing:
Overdose deaths from benzodiazepines are actually increasing greatly lately, according to the CDC. From 2002 to 2015, the number of yearly benzodiazepine overdoses increased 4.3-fold, up to about 9,000 per year.
Wow.
That’s a bunch of pills….
Clearly biological psychiatry can’t be trusted to fix the problems which biological psychiatry creates. It will instead always respond by turning these into even bigger problems, which again, coincidentally, only biological psychiatry can supposedly fix. This is the business formula by which psychiatry has survived and thrived since 1988. Its role is not to heal illness, but to make healthy people ill, or “illify” them.
Well said.
Humanbeing
I believe you were correct about the extremely low fatality rates taking a single overdose of ONLY benzos. The CDC statistical rates that Dr. Kelmenson quoted were INVOLVING benzodiazepines, meaning other drugs were involved in these deaths.
AND very few people die of a single overdose of ONLY opiates. I believe 90% of the time other drugs are involved, with a high percentage being benzos – my estimate would be close to 50% of these poly-drug overdose deaths involve benzos.
Richard
Benzo withdrawal was by far the hardest thing I have ever done in my life. My benzo-withdrawal symptoms included severe anxiety, akathisia, depression, severe insomnia, and a litany of other symptoms. This went on for 2 years. In my experience benzos are not life-saving, they are life-destroying.
Your article focuses on how horrific SSRI withdrawal can be. I accept that is true. However, it is really unproductive to get into a “which is worse” sort of argument, which you invite by recommending patients go on benzos to deal with SSRI withdrawal.
When people go to doctors for benzo withdrawal, doctors often put them on SSRI’s. Now you’re saying you want to put people on benzos to treat SSRI withdrawal. This is insanity. “You’ve got a problem? Great, I’ll give you another one.”
Sorry, your shout-out is not getting agreement from *this* member of the benzo-support community.
“People who have lost their jobs and relationships may receive no acknowledgment from mental health providers or family that their condition is due to stopping SSRIs. The public and mental health professionals are not familiar with tardive akathisia.”
This is the problem, since the “mental health providers” are supposed to be experts in the drugs they prescribe, but they are either ignorant or in complete denial of the adverse effects of their “wonder drugs.”
I had six “second opinions” regarding the common symptoms of antidepressant discontinuation syndrome misdiagnosed as everything from “depression caused by self” to “schizophrenia” to “bipolar” within weeks. I didn’t even know I’d been given an antidepressant since I had been misinformed and told it was a “safe smoking cessation med.” But even I knew I was dealing with problems caused by a drug, not some sort of “lifelong incurable genetic mental illness.”
This lack of knowledge, and the resulting misdiagnoses of the adverse effects of the antidepressants, has resulted in medical malpractice in the US on a staggering societal scale, particularly amongst children.
Doctors have malpractice insurance for a reason, and today’s “mental health providers” owe those they’ve harmed, due to their ignorance and/or denial of the common adverse effects of the antidepressants, proper malpractice settlements. The legal profession’s refusal to take cases and sue the “mental health providers” is part of the reason millions and millions of Americans have had the adverse effects of the antidepressants misdiagnosed. And this “mental health provider” malpractice on such a staggering scale will not end until the lawyers start taking these cases.
Thank you for pointing out the “mental health providers'” ignorance, it is shameful the majority of the “mental health providers” are still either unaware or in denial of the adverse effects of the antidepressants, and they are still misdiagnosing the common adverse effects of the antidepressants as other “mental illnesses.”
One does have to wonder about the ethics of a medical specialty that is refusing to stop turning millions of innocent children and adults into “bipolar” “schizophrenics” with the psychiatric drugs, merely because this is what is profitable for them personally. And especially since their promise to all of humanity was to “first and foremost do no harm.” Talk about complete hypocrites.
I was a youth when I was taken down the road of polypharmacy and spurious diagnosis. By the time I was going through withdrawal, I was an adult, and I knew the wrong that had been done to me, and that it had not come from my own mind. I had to remind myself of that continually as I went through the suicidality of withdrawal.
We must stop these drugs from being given out. Best way to do this may well be Crimes Against Humanity prosecution in the International Court.
Great observations especially with regard to slow taper and reinstatement. Was ready too share this very good article with my 10000 member Cymbalta Hurts Worse group but the benzo recommendation stopped me cold. There are so many in our group and through networking among survivors and sufferers that have been benzo poisoned.
I’m glad to see the potential horror of SSRI withdrawal getting some recognition for a change, but I don’t think that benzos are the solution to surviving SSRI withdrawal. I’ve been down that road myself, and I think it was a bad mistake.
Do you have any experience with withdrawal from Parnate?
Dr Shipko.
As a former psychopharmacologist Who is now on disability perhaps from withdrawal of long term psych med use. I am wondering if you have any insight into why some people have little or no trouble withdrawing from SSRIs and or Benzos even after yrs of use in a short time with no ill after effects. I know several and there is scientific literature that documents this and for others it is such a devastating experience. How can we explain the differences?
I’m not Dr Shipko. It could be that the phenotype of the liver enzymes metabolising the drugs is ultra-rapid and not much of the drug is actually getting into the system. The body has to change itself and adapt to the drugs. The withdrawal experience – I guess – would be dependent on how much change/damage the body has done to itself. Guessing again, but probably there is a whole heap of things that we do not know about in terms of that change.
I thought this too, but then had pharmacogenomic testing that came back indicating normal metabolism of the drugs I had been taking and that had injured me and caused the neurotoxicity or protracted withdrawal. I asked the forensic psychiatrist I see who ordered the test (who is above average on the psych drug injury awareness scale – in other words, she believes me and has educated herself) if the pharmacogenomic testing was any indicator of whether physical dependence and subsequent withdrawal syndromes/NT would develop and she said “no”.
I guess a normal phenotype means the drug is getting into your system and your body is having to adapt and change itself and you are becoming addicted… so if you just stop your body will in effect fall off a cliff. I’ve read that even with a ultra-rapid phenotype people can still go into severe Akathisia. I would guess it’s the food stuff/herbs and spices drug/drug interaction that block/inhibit the enzymes that is possibly doing the damage. The food stuffs are as common as: black tea, garlic, black pepper and valerian seems to outright blocks Cytochrome P450, it’s found in Nytol I found out the hard way and to my extreme cost.
And I would ask the psychiatrist to qualify the no answer.
Withdrawals from SSRI drug’s are terrifying. I was on Cymbalta for 10 yrs and my company changed insurance which did not cover this drug. Which meant that either I paid a thousand dollar deductible or no Cymbalta! This was something I refused to pay and absolutely could not afford. I could not get the insurance company to budge. I was scared because I have felt the withdrawals from just missing a dose from time to time. I explained to the insurance company that this was something that I could not just stop due to the severe withdrawals and then they acted like I was a drug addict for talking about the withdrawals. Over and over I called my insurance company back during the last month of my medication just praying maybe this time I was going to talk to someone that understood this kind of medication, but that never happened. The outcome was very bad and I am still trying to get through this by taking a different SSRI . It should be against the law for an insurance company a state plan at that to have the right to do people like this. They are not doctor’s not even close, my doctor’s really don’t even know what to do. I am at a loss but thank you so much for sharing this with me. This is something that I will definitely be passing on to my doctor.
This was my analogy of Akathisia made in my compliant:
“Imagine being in a living room at ground level and all of a sudden a gas canister with tear gas comes smashing through the window. Immediately your environment has been changed and you are in panic, choking and in a very agitated state to change this sudden situation and get the gas out or get yourself out of the situation, you have the option to run outside, maybe you open windows, turn on fans but are overwhelmed and have to run out. That is the movement disorder expression of akathisia, but your compelling need is to get outside of yourself, out of your own head. The difference is that you can not unless the drugs – that you don’t even know are causing the situation – are tapered off and stopped, it’s more like being in one of the trade towers on 9/11, the horror is so intense throwing yourself out the window is the best option.”
For someone else who suffered:
“it was the worst experience of my life, it was like being locked in the moment after you’d just been hit by a car. I was in constant shock, panic attacks, raging anxiety, I would have honestly preferred to be dead than on them.”
If patients use words such as: Hell, Torture, Horrific, Horrendous, Horror and they are on almost any psychiatric drug save lithium you should straight away think of Akathisia. And then attend to the drugs.. have they just commenced or been increased/reduced. This doesn’t happen because it’s usually the very doctor who prescribed the drugs, and doctors are the last people to admit their mistakes especially to a patient. Further they do not taper patients off the drugs and if they do, it is not the correct way, ala Heather Ashton. Hence people go into withdrawal Akathisia. Then you have the common food stuffs herbs and spices which inhibit/block the liver enzymes: Cytochrome P450. No doctor I’ve come across informs the patient of this interaction. Put it all together and you have an epidemic.
“Medicine is filled with difficult choices, and I ask that the benzo community consider withdrawal akathisia as a possible valid indication for the drugs. For severe akathisia with suicidal ideation, benzodiazepines can be lifesaving.”
Yes, but it is my view that alcohol is better because the withdrawal/tapper from alcohol can be better controlled: it’s liquid, can be measured instead of trying to cut tiny tablets. Also benzo withdrawal akathisia is in my experience way worse than alcohol..I tried both and found alcohol better. But again it’s personal, and in trying people can expect to go through hell either way.
For those going through it, tell yourself or get a relative/friend to tell you: YOU ARE GOING TO GET BETTER again and again and again…
Here is Prof Heather Ashton:
https://www.youtube.com/watch?v=UsjhqdE7-6A&spfreload=5
http://benzo.org.uk/BNF.htm
I’m guessing you do realise that Akathisia is also a withdrawal symptom of benzodiazepines and that it will have to be very slowly tapered as well, and may-well get out of control given the very emotional, compulsive state a patient will be in. But yes valium can stop it, but as said, I’ve found alcohol better because you can finely control the taper withdrawal. This is from my own experience of Akathisia.
‘After 15 years, most — but not all — people are going to have serious symptoms when stopping SSRIs and SNRIs.’
You can have serious symptoms within mins/hours of stopping or even taking a liver enzyme inhibiting/blocking common food/herb/spice or all combined. And after taking only a few tablets to begin with. I think Stewart Dolin had taken only 6 Paxil tablets before he jumped under a train. He had just previously been for a business lunch.
Dr. Shipko,
Your desire to alleviate suffering with the use of benzodiazepines for the symptoms of withdrawal of an SSRI is laudable and clearly speaks to the empathy you have for another’s suffering. However, through this practice are we now creating another problem with its own collection of side effects and risks that will ultimately lead to another need for action? Some might ask who is being treated with that benzodiazepine? Is it the person withdrawing from the use of the SSRI or could there be some need to treat your own discomfort from the empathy you have for them?
There are other tools available for aiding in the symptoms associated with the discontinuation of a chronically utilized substance. Mindfully focused therapies with an emphasis on daily home practice will aid an individual to become aware of the tools they possess and strengthen there ability to accept unpleasant sensations in a more detached manner. Not an easy or quick solution and one that may need to be initiated before the beginning of the discontinuation of the medication. Learning detached focus when one’s brain is effectively screaming may be beyond routine abilities.
Acupuncture and other aspects of Chinese/Japanese/French Energetic medicine has the tools to focus on an individual’s strengths and energetic imbalances. Targeting the imbalances as they present and then rise and fall through the discontinuation process can be of benefit.
Encouraging participation in an exercise program will call for your Motivational Interviewing skills and reasonable and compassionate coaching. Establishing long term expectations for exercise goals will help people develop programs that can enhance their metabolism through activity and support each individual’s internal healing process. For those who think they are physically limited, directing them to Tai Ji performed in wheel chairs may be a fair demonstration of how exercise may be pursued when physical abilities have limitations outside of routine expectations.
The above ideas are tools I’ve used with varying successes. Some people choose one or more of the tools. Some none. Some prefer to continue with their suffering and there is some merit in that as well as that may offer them a social reinforcement they find satisfying. Each has their own solution. Ultimately there is an answer to be found but adding another medication, one that is so potentially addicting and harmful, to the human stew pot is rarely my first choice.
Just to state I’m not Dr Shiko. The problem with the use of benzo’s to treat Akathisia is that Akathisia can very much be a symptom of benzo withdrawal. So although valium would stop it, you then have to know how to withdrawal from valium as well. Also a person in a drug induced suicidal state will have – at hand – drugs to attempt suicide. So it is not an easy situation at all. People with Akathisia need to be in a rehab situation for about a month to be closely monitored and then the family/close friends need to be taught the correct method for the longer withdrawal from what ever the drug is.. SSRI or benzo or both or more. If there is no family/friends that patient is very vulnerable indeed, really needs close monitoring for a long time and that just doesn’t happen.
I agree that carefully calibrated rehab and other monitoring over the longterm is really the only solid option. Piling more drugs on top is a dangerous game.
It’s my view that Akathisia, eventually, will blow psychiatry up.
This is my visual analogy of the condition. The so called movement disorder is a very desperate need to get out of your own head, out of yourself, out of the horror :
https://www.youtube.com/watch?v=Lb1h4RsmIM0
I agree with all those who have raised SERIOUS questions about the use of benzos to alleviate problems with protracted withdrawal from SSRI’s.
From Dr. Shipko’s series of blogs, IT IS NOT CLEAR WHETHER OR NOT BENZOS ARE ACTUALLY ONE OF THE CAUSES OF THE LONG TERM EMERGENCE OF AKATHISIA AND/OR PROTRACTED WITHDRAWAL FROM SSRI’S, OR JUST A SHORT TERM REDUCER OF THESE HORRIBLE WITHDRAWAL EFFECTS THAT ENDS UP MAKING LONG TERM RECOVERY MORE DIFFICULT.
Dr. Shipko is NOT presenting a careful scientific presentation of all the evidence here with accurate timelines and knowledge about patients history of benzo or other sedative/hypnotic drug use over many years. This is only ANECDOTAL experience by one doctor’s observations over several years. I appreciate his efforts to help people and find out more about these withdrawal problems, but his conclusions and practices regarding benzos should definitely be SERIOUSLY QUESTIONED by all, BEFORE these drugs become more actively used in these cases of SSRI withdrawal.
I would raise the following important questions about the ANECDOTAL evidence presented by Dr. Shipko:
1) Anxiety is usually very much a big part of the depression experience as people lose confidence in their ability to predict their environment around them. This makes the prescription of benzos (from many different kinds of doctors) a huge likelihood in the prescription experience of those patients experiencing depression and/or protracted SSRI withdrawal. How many of these patients had PRIOR prescriptions of benzos and were PRIMED to both desire them (because of their short term effectiveness) and to develop dependency issues and/or the resulting benzo withdrawal issues that are now blamed on the SSRI’s?
2) We have no way of knowing if those people suffering severe protracted SSRI withdrawal (including suicidal tendencies) and who were prescribed benzos (by a doctor anxious to reduce suicidal thoughts) what ALTERNATIVE solutions they would have eventually sought out to solve their problems. And perhaps this level of desperation could have led them to find BETTER and less dangerous solutions than taking benzos.
3) We have no way to really know the actual LONG TERM results of those patients who ended up taking benzos to reduce their horrible withdrawal effects/akathisia. Are they eventually able to get off of the benzos, OR do they just become slaves to another drug withdrawal process that prolongs their misery?
4) There is no documented evidence of the overall health and daily practices (and trauma histories) of those suffering akathisia and/or protracted withdrawal, including whether or not they use other mind altering substances or have lifestyle choices that make their withdrawal more difficult.
5) For all these reasons it would be a huge mistake to draw ANY conclusions that somehow benzos are a safe alternative for people experiencing protracted SSRI withdrawal problems. At this time there is far more scientific and anecdotal evidence about the extreme harm caused by long term benzo use.
Richard
Yes he is falling into the trap of not being able to think his way out of the drug model to solve this problem. To be fair it is an extreme state and the use of a benzo with someone who is about to attempt akathisia suicide, I would immediately say yes to, every time. But the issue is HOW you bring someone OFF the drugs. All of the psychiatrists I’ve known are only interested in tapering as quick as possible to get the patient on another drug. This is the cycle of abuse that has to be broken.
Let’s be clear, for everyone going through this, it is, without doubt the most horrific experience anyone can go through without leaving a physical scar, and when you add another drug, you are almost certainly putting that person on another trajectory of hell, if you do not know what you are doing. I’ve not known a single psychiatrist who did. Akathisia is a very serious condition, the movement disorder (it doesn’t always happen) is easy to spot, however – in my experience – psychiatrists will not accept it is far more serious and they have made a mistake and should be made responsible if they try to cover it up, because coercion is used, the patient is forced to take the drugs in a psychiatric setting and even outside as an out patient: they use social workers and psychiatric nurses to make sure people take the drugs. For the psychiatrist/social workers/nurses it’s a deepening of the ‘illness’ to psychosis and they pile on even more drugs. This is very tragic.
You tell me what to do then? Tapering off SSRIs increases my akathisia. Increasing SSRI dosage increases my akathisia. Benzos have helped reduce the agitation. No one can tell me or anyone else in this situation how to cope or how to reduce the intolerability of akathisia. They condemn the suggestion but don’t realize that anything that makes this condition worse increases the risk of suicide. It’s not a grin and bear it condition. It lasts for long periods of time. When I went off benzos years ago, my withdrawal was horrible but I did not have these long, sustained periods of akathisia that I’ve had with SSRI withdrawal. Sometimes people just can’t get off the drugs. Sometimes, you have to make very hard choices.
I went thru it and lived.
No drugs…I just white knuckled it. It does ease off after a period of time (for me about 3 months). I DID get some acupuncture done, and that seemed to help a bit with the sleep, but eventually I had to learn some self-soothing techniques: meditation, taking one moment at a time, distraction, exercise as tolerated-and getting outside. There’s lots of support online i.e. “Surviving Antidepressants” and “BenzoBuddies” and others. You are stronger than you think! It IS hell. And for me it continues to be hellish when waves of symptoms hit, but there have been windows of time when I almost feel normal, and that keeps me going. All of it unpredictable with no time-frame.
Coming off psych drugs is not for the faint of heart. It’s your choice, it’s your body. I just wanted my brain back and not be a slave to BigPharmaTM. You also might want to check out Robert Whitaker’s “Anatomy of an Epidemic”…I stumbled on a review of it in the NYRB, and the lightbulb went on; my whole experience with psychiatry there on the pages.
Good luck to you.
I went off psych drugs. Been dealing with this since 2010. I went off xanax after 6 years. I cut 10% a month for a year. Missed 3 months of work after my last dose, did not return to any form of consistency for about a year. Made a foolish decision to also go off Paxil and that sent me to the psych ward and then ECT. Awful experiences that didn’t help. I don’t have it in me to do another slow taper. I have 2 kids and a wife and a job to keep going. The intensity of akathisia is way more intense than anything I endured off benzos and that is saying ALOT. Benzos are providing some relief. I can function, go to work, be there for my kids. And I’m very well familiar with Whitaker’s book. I wouldnt’ be on this site if I weren’t. My point is that there are no easy answers and being a rigid staunch anti-med at all costs misses the fact that there are no easy answers to this.
Richard:
Thanks for clarifying that it was deaths involving rather than solely from benzodiazepines, as I had not picked up on that.
In any event, this big rise in benzodiazepine-involved overdose deaths, which correlates with a big rise in benzodiazepine prescriptions, is not getting nearly as much press as the huge rise in opioid-involved overdoses. But clearly the problem is that getting on one drug often leads to getting on others, which just makes things worse. And one other reason not to prescribe benzos: Controlled substances (benzos, opiates, amphetamines) raise the risk of car accidents, since they impair driving ability. The percentage of drivers in fatal MVAs who had such prescribed drugs in their blood, has been steadily climbing lately, which is likely part of the reason why fatal MVAs have reversed a downward trend, and have been rising lately. Not only are people driving under the influence of these drugs at risk, but we all are, since we all must share the same roads that people on such drugs drive on. Psychiatry has already done enough damage with all the “indications” for benzos it has already devised. We do not need any more.
Dr. Shipko: Thank you for acknowledging the tremendous difficulty & risk associated with SSRI withdrawal. Specifically, your honesty about people losing jobs & relationships, letting people know that whether or not they taper slowly or fast may not ultimately matter (but it is better to do slowly) and that the process can take months, if not years, and can be very difficult. I have been on antidepressants since my mid 20s (not always on a constant basis; at first only after each depressive episode). During my mid 30s, I attempted to taper off SSRIs gradually with my acupuncture M.D. who also provided natural Chinese herbs, but this failed after several months and I plummeted into another depression. At age 40, I felt the SSRIs (by this time I was also on a mood stabilizer, to prevent another “hypomania event” from occuring) were making me toxic and went to An excellent Nutritionist, did much research on “how to withdraw from psych meds” books, etc. and gradually tapered off my meds over a period of months. At first, I had my family’s support, but as time went on and my behavior and judgment becawhichss & less stable, they felt they had no choice but to hospitalize me. I actually learned later on I was exhibiting psychotic & paranoid behavior, which does have a name when it occurs post withdrawal. It is called “serotonergic reaction”. The problem with serotonergic reaction is that psychiatrists will not admit it is occurring and/or they are simply not educated about it. What they WILL tell you is that “you are getting sick again” and that “you must go back on your medicine”. After my hospitalization, I was “punished” by being placed in a Group Home for 2 years, which was ridiculous as I had always lived on my own & functioned quite adequately. But now I had to be monitored! About a year after I got out of the Group Home, I found a psychiatrist who agreed to work with me, signed a contract to discuss NOTHING with any family members and tried yet again to taper off the SSRIs. I traded in my Toyota Corolla for a Toyota Highlander, put all my belongings in storage and decided I was gonna “get off the meds, the Disability & kiss the Mental Health System goodbye” once & for all. This psychiatrist felt I didn’t actually need to taper, which I felt was odd. He told me I could just stop taking the Prozac. I think I was uncomfortable with that so I took it every other day, then every third day, then stopped. Anyway, later on I learned that this was actually worse than just stopping cause you’re actually causing a surge of serotonin in your body. Over the next 4-5 months, we did gradually eliminate all the meds. I was staying in hotels, sleeping on a friend’s couch, sleeping in my SUV. running up my credit cards, running from my family. I was pretty unstable again but not as bad as the last time. I managed to rent a room upstate, tried to find a job and stayed up there about 3 weeks before I plummeted into a depression again. My depressions always hit me like that. I could go into a state of darkness within a day or two and become suicidal for months. So I surrendered. I called my Dad, asked if I could come stay with him and if he could take me to the BBB hospital. He was so relieved. No one knew where I was for months. Everyone was worried. I had about $8,000 debt on my credit card and an SUV which I couldn’t make payments on. There were friends I lost and never regained. I had nowhere to live. I eventually paid off my debt, moved in with someone who gave me a cheap room, got back in therapy and back on meds. I was rehospitalized a month later as I was still suicisal. The climb back was tough but I did it. I had to take buses for a while but my Dad helped me out with another car a year later. Since that time I have vowed never to attempt to go off my meds again. I’m a 3 time loser…I’ve had enough. I screwed up my life 3 times. For some people, it’s possible to get off the meds. For me, I do not believe it is. And I’m not willing to try to find out again. So I wanted to share my experience with others so you should know. It can be done but it’s a huge risk so you better be ready for it.
These are important conversations to have, but much of this advice is disturbing to me. How is it that psychiatrists continually base their plans on such faulty premises? SSRI withdrawal and benzo withdrawal are equally as bad. One cannot be an aid to the other. That is not a solution. Particularly when we also consider the risk of interaction or paradoxical reaction!
I’d like to talk about sensitivity, since I know it well. In my experience, it was never really possible to avoid serious withdrawal. But I refused any other medications to replace the one I was weaning off of.
I was put on Paxil in high school. I didn’t need it, and I didn’t respond well. But I didn’t know any better because I trusted my doctors, and the years that followed were filled with some of the most egregious examples of polypharmacy I have ever encountered. All told, I was on drugs for 13 years. The first 8 years were spent on combos of 2-5 drugs, often changed, with abrupt starts and stops. The latter 5 years were spent in slow taper from Paxil. I had tapered off the other drugs the year before, fairly easily.
I found a psychiatrist who acknowledged withdrawal (most of them didn’t) and he prescribed me liquid and suggested an initial 10% decrease. That was horrific. So was 5%. I ended up with a 1mL dropper, and I would decrease 1/100 of a mL at a time, or within a margin of error. That’s 1/50 of a mg. Even that was enough to give me debilitating withdrawal: akathisia, suicidality, brain zaps, everything. But at that tiny taper, I felt I had slightly more control over the suicidality, and the frank withdrawal would not last more than a couple of weeks at most. Then I’d taper again. Sometimes I’d go a little faster, but never more than 3/100 mL in a month.
So you see I couldn’t wean slowly enough to never have withdrawal, since even the tiniest decrease caused it. As it was I was weaning for years. Even so, I didn’t feel that replacing one drug with another would be a healthy thing to do. Simply staying on the drug was not acceptable either. Nor did I feel the need to raise my dose back up, like I would have to do with cold turkey or larger decreases. Instead I’d just wait the withdrawal out.
I was seriously unwell for a year or more after finishing the final 1/100th. 2 years out I am mostly normal, aside from occasional brain zaps, drug-induced diabetes, and a deep sense of traumatic betrayal.
Withdrawal is the reality of these drugs, and we can’t reliably medicate that away.
Instead we need a new model of rehab. SSRI withdrawal requires rehab, but psychiatry is seriously slow on that count. I could barely find doctors who acknowledged the existence of SSRI withdrawal, let alone facilities to help me! If the only way out is a slow taper, SSRI patients need a place they can go to be safe when the withdrawal symptoms hit. I didn’t necessarily need a place with a 12-step program or treatment for behaviorally-driven addictions, but I did need a place where my withdrawal could be supervised.
I always imagined a program that would have an initial consultation where the patient would be educated on the risks of withdrawal, then an initial supervised trial wean as an inpatient, then a return to normal home life once the withdrawal had subsided. Subsequent weans could be done as an outpatient, with the potential to convert to inpatient if it got too severe. Basically the patient stays in touch and comes and goes as they feel necessary. The key thing is that the psychiatric changes would need to be recognized as temporary aspects of withdrawal, and not misdiagnosed as so often happens.
I suppose some patients will be desperate for anything, anything to curb the withdrawal, and that those patients will actively seek out other medications. But I do not think this should be normal psychiatric practice.
In my case, Dr. Shipko and I shared an understanding of how horrible benzo addiction and withdrawal are. He prescribed a tiny dose and only ten pills at a point when I’d had 18 months of probable dopamine-agonist withdrawal syndrome (though I didn’t know it at the time). I can’t imagine feeling any worse and can’t quite believe I endured what I did before finally going to see Dr Shipko. Pot barely took the edge of the edge off. Beer worked, but not very well. I’d been drinking a 12-pack a day for well over a year; that’s what it took to feel okay. Having those ten pills meant I finally had a way of turning it off, temporarily. It meant the world to me.
Dr. Shipko wrote this column about people like me, and he prescribed Ativan sparingly, just once, for me. Benzos are not an option for people whose suffering is caused by benzos. Mine was caused by different drugs.
“Sometimes high doses [of benzos] for long periods of time are needed.”
I think that is more what people are concerned about.
I think he makes valid points , this is a well written article especially with the careful taper advicd. As someone who has experienced horrific akathisia from SSRI use among many other extremely debilitating symptoms , bed ridden symptoms I must add for multiple years, I would say using a Benzo is tricky but also should be an option on the table. 10/10 strength Akathisia when you are ready to do something to yourself or someone else how can you not have this as an option? small doses not used regularly should be the way to use a benzo for extreme SSRI WD. IT gets tricky if the patient needs to use them everyday. BUt I know its saved people , I know of a friend who was done for from the relentless Akathisia but a benzo saved him from ending it all. Just the fact the he can keep it around for when his akathisia hit s a high level gives him the confidence to go forward. Dont get me wrong I know the benzo can do the exact same thing the SSRI does. They are equally terrible and the WD from both can be horrific. But when someones life is on the line or someone elses life all options have to be available.
I agree with the majority of others aswell that high doses for long periods of time is basically the same hell as the SSRI so that doesnt help one bit , but what the hell are the options , How many people have the inner strength to battle and defeat an awful SSRI WD sydrome ? I mean the fact that so many people are suffering from this is just too much to handle. At least this Doctor gets it and understands , 99% of the other Doctors are harming and killing people at an alarming rate. This is a dark age of medicine.
Riding it out. Knowing what is happening to you is helpful. I didn’t have a clue when the akathisia hit.
A good support system and true informed consent is required.
Finding BenzoBuddies saved my life.
Dr Shipko, I wanted to emphasize that it is not just those who have taken SSRIs for 10+ years that experience long term problems. I took an SSRI for about 5 months total at a low dose and even now that I am 6 years off of it I still have chronic symptoms. I was in my early 20s when I started the drug. I had everything on my side (young, low dose, short duration of use) and I still experienced permanent damage. I doubt many doctors would see patients like me because we have grown completely distrusting of medicine after it left us for dead and we are already aware that even if we found a doctor like yourself who understands, there would be very little you could do to help.
For a number of years now I have been considering trying to reinstate the SSRI to see if it would help alleviate any of my symptoms. It is one of the scariest things I could ever do and I’m still not sure I have the guts to go through with it. In general the community of those that have been harmed by these drugs are very against this sort of approach. I understand that they have been harmed a great deal by these drugs but I also think that perhaps some people would do better on them. I see the same resistance in these comments around your idea that taking benzos could help people in severe withdrawal. I think it’s important to be open to all possibilities and perhaps taking benzos is better for some people in order to minimize harm. Of course I also share their serious concerns that taking more drugs could ultimately make things worse in the longer term. Lets tread carefully.
I took Paxil for 15 years and Xanax for 6 years. The withdrawal from xanax was horrible and lasted in high intensity for about a year after my year-long taper (which was also difficult). I went off Paxil after the benzo withdrawal had died down. After a month off, I tried to re-instate on Paxil but that did not help. I ended up in inpatient psych facility and was later transferred to another facility to do ECT. ECT did not help, and the experience haunts me. When I returned home, I thought I was heading for suicide. Constant ideation which was fueled by the intolerable feelings of akathisia. I have a wife and two kids and I wanted to live. So I went back on benzos and the degree of intensity of the symptoms lessened. I’m still struggling and I don’t know if taking benzos just put off more intense misery later. But I do know that I have been living my life with my kids and wife for two years since I made that decision. And that wouldn’t have happened without re-instating benzos.
We’re all reaching in the dark here. I think those who use their personal experience of benzo withdrawal to castigate Dr Shipko are seeing the situation only through their own experience. As, I admit, am I. But my experience tells me there is no easy answer to this situation. And, of all the horrors that I endured getting off benzos, I never experienced akathisia. And I was grateful for the relief that benzos brought me. It may easily be something that haunts me later, but I know my wife and kids are glad I’ve been around the past two years.
The less we stand in rigid judgment about treating a condition where there is so little actual research or understanding of its nature, the better off we’re going to be.
When I started to recover from this hell, my friend Sue would send me links to music. Here is some of it… a very talented young woman, she plays everything and loops..murder to the mind:
https://www.youtube.com/watch?v=aILYbUDGDks
and here is the sophisticated guitarist Kaki King and Ethel – Great Round Burn:
https://www.youtube.com/watch?v=3wDDTaKHj1I
and second brain:
https://www.youtube.com/watch?v=YMmw7HiOkLI
Departure from the Northern Wasteland (must admit I just watched the visuals on this one)
https://www.youtube.com/watch?v=Di5GGKv7_00
Think it is an important question to ask: Is there ANY official state guidance for treating Akathisia, I’m not aware of any in the UK. It – as far as I’m aware – isn’t even on the NICE website…anyone ?
Good day, I am so relieved to have found this page and the information contained. I have been tapering of Lexamil for the past year. From 20mg down to 10mg, but to taper off the last 10mg is very very difficult. I have started trying to taper but after a few days find myself going back to 10mg. I will now try to do it even more slowly by reducing with 2.5% at a time. My question is for how long and how do you taper by reducing. I followed the method of e.g. 10, 10, 5, 10, 10, 5, 10 for 2 weeks. Then by week 3 10, 5, 10, 5, 10, 5, 10 for 2 weeks and so on. Please assist me with a how to. Many thanks – MAD is South Africa