Editorial Note: Sven Ternov, a doctor working in Sweden, recently wrote this article which appeared in DagensMedicin in January 2013. He has translated it for RxISK. Several other doctors have written about their difficulties in withdrawing from antidepressants – mostly men which is interesting.
Posts to RxISK on the topic of withdrawal, Antidepressant Withdrawal: V’s story and Monica’s Story have led to the greatest number of comments and helpful input from readers.
Warning SSRI withdrawal just as bad as benzodiazepine withdrawal?
After suffering from endogenous depression, I was prescribed venlafaxine for several years. For various reasons it seemed a good idea to try and stop the medication. With great care (or at least so I thought) I attempted to phase out the drug over a period of a month and at first, I seemed to have done so successfully.
Hit from behind
However, barely a week had passed since the last of the metabolite had left my system when I was subjected to withdrawal symptoms at a frightening level. Firstly, I experienced a feeling of what can only be described as electrical bangs in the head (this is a typical abstinence symptom of SSRIs, often called “head bangs”). It is a very unpleasant sensation in the head as if the brain refused to follow each time I turned my head.
I was also subjected to tinnitus-like hearing hallucinations followed by a monumental fatigue almost at the level of narcolepsy. Amongst other things this fatigue impaired my ability to drive. I was aware that due to my driving, the car would weave erratically between the centre line of the road and the side line. I came to the conclusion that the reason for this was most likely due to multiple episodes of micro sleep. As a result, I almost completely quit driving for several weeks. However, when I did drive I had no other option than to sleep in the back seat for a period of five minutes after every 20 minutes at the wheel in order to maintain a relative degree of safety.
Wikipedia 1 drug information leaflets 0
These “discontinuation symptoms” appeared quite unexpectedly. Although it was no easy task finding information on SSRI/SNRI abstinence symptoms, I did some research on the internet. Wikipedia had an excellent article on SSRI withdrawal syndrome, which was totally new for me. The article mentioned the “head bangs”, the fatigue and many other unpleasant side effects including different kinds of sexual dysfunction, which can persist for a very long time after discontinuation of the drug.
Close reading of the FASS (the Swedish pharmacopeia) showed that these symptoms are actually mentioned in a small subparagraph under the heading “discontinuation symptoms”, inserted amongst a huge amount of text under the main heading “Warnings and caution”. The description of the symptoms is very vague compared with Wikipedia. No mention is made of “Head bangs”whatsoever.
Notes on another scandal
This leads me to two considerations. One is that it is scandalous that we as prescribers of these drugs are so poorly informed about SSRI/SNRI withdrawal/abstinence symptoms. The patients often ask whether they can become addicted to these drugs and we reply without any suspicion “No its not possible”.
What we should be informing our patients about is the possibility of being subjected to a large amount of problems the day it is decided they should stop taking this particular kind of medication. Dependency can occur rather quickly, judging from the scatterings of information on various internet sites, including blogs. It can be as quick as 2-3 months – some drugs are worse than others.
When should you take the risk?
The other consideration is that we far too hastily prescribe SSRI/SNRI for various discomforts in life. The indication is (or at least was) endogenous depression. Unfortunately, the pharmaceutical industry has succeeded in expanding the list of disorders for which the SSRI might be prescribed, including compulsive disorder, panic syndrome with or without agoraphobia, Social phobia, Generalised anxiety disorder, Posttraumatic stress syndrome.
In my opinion it is totally irresponsible to expose patients to the side effects of these drugs just because they have “run against a brick wall” or other similar kind of exhaustion disorder. It is not, and never has been, an approved indication for prescribing this kind of medication.
SSRIs as bad as or worse than benzodiazepines
A literature search in the PubMed database on SSRI and SNRI withdrawal resulted in seven hits only. Of these, the only relevant article was by Gøtzsche and Nielsen (from the Nordic Cochrane Centre in Copenhagen).
Nielsen and Gøtzsche are of the opinion that a patient is subjected to the same type of addiction from SSRI as for benzodiazepines. However, the classification of dependence in DSM-III was changed in 1987 shortly before SSRIs were introduced so that the SSRIs escaped the “addiction stamp” (which would have severely affected sales).
They conclude: “withdrawal reactions to selective serotonin re-uptake inhibitors appear to be similar to those for benzodiazepines; referring to these reactions as part of a dependence syndrome in the case of benzodiazepines, but not selective serotonin re-uptake inhibitors, does not seem rational.”
Business as usual cannot be let go on
I suggest that our prescriptions of SSRI/SNRIs are recalibrated. Before prescribing, we should not neglect to inform the patients about the risks of severe abstinence, and,as the risk for abstinence appears to increase with the length of the treatment, to keep the treatment period as short as possible.
Finally, I sincerely suggest that the text in the pharmacopeia for SSRI/SNRIs is clarified in accordance with what has been written above and that the text includes a distinct warning.
RxISK notes
DH was a guest speaker at a Danish Universities Antidepressant Group meeting in November 2012, organized by Per Bech. At this Peter Gøtzsche presented Margrethe Nielsen’s work referred to above – showing that SSRI dependence and withdrawal is as common and as bad as benzodiazepine dependence. There were about one hundred psychiatrists in the audience.
There was uproar. The older psychiatrists in particular were angrily opposed to the idea that SSRIs could cause withdrawal problems and keen to tell Peter that he simply had no idea how horrific benzodiazepine withdrawal was. Gøtzsche’s problem is that he is not a psychiatrist.
I am a psychiatrist and SSRI dependence appears more severe and at least as common as benzodiazepine dependence to me. Lots of patients who have been through both tell me its worse than opiate withdrawal. But it shouldn’t be a matter of personal opinion.
On RxISK we have a teminator algorithm for symptoms and difficulties that emerge on stopping treatment (SoS – symptoms on stopping). There are simple ways to distinguish between dependence and withdrawal and other problems. These give rise to an objective RxISK score. In the face of a high score, your doctor would be remiss not to take the possibility of dependence and withdrawal seriously.
Any drug can cause withdrawal problems that may be lethal, including a range of gut drugs, antihypertensives, and others. There are new drugs like the MABs and biphosphonate drugs which will almost certainly cause withdrawal problems and we would invite anyone taking these drugs or doctors looking after them to give us reports of symptoms on stopping, for how long they last, and what if anything helps alleviate the problem.
We would in particular like you to generate RxISK Reports, take them to your doctor and feed back just how they respond. When doctors like Sven Ternov here agree that a problem is real it has a big effect on other doctors.
See the Guide to Stopping Antidepressants from RxISK’s Medical Team.
Johanna says
Not only are patients not told about withdrawal effects – when we experience them, we are usually told that this is our underlying disease returning, and that our distress proves our need to take the medication for life. This is true even when our condition while withdrawing is different from, and worse than, the condition we were in when we first sought help and were put on medication.
Here’s a question for the researchers: Numerous studies have already been done, especially with antidepressants, in which people are put on the pills and then some are maintained on them while others, unbeknownst to them, are switched cold-turkey to placebos. The trouble is that these studies were designed and interpreted to support patients’ “need” for long-term medication. I was in one such study involving Paxil back in 1994. (I didn’t sign up to further the march of science, but for insurance reasons: I was having too much trouble wringing some treatment out of my employer’s health plan. Free drugs, plus monitoring at a world-class medical center, sounded like a pretty good deal at the time.)
I never found out whether this study was published. When I finally landed an appointment with an individual psychiatrist, his reaction was that this had been a “pretty stupid study,” because “everyone already knew” that people like me who’d had multiple depressive episodes should be on medication for life. That makes me think that there were already multiple published studies of this type – and probably dozens more like mine that the drug companies never bothered to publish, even if the results seemed to back up the need for long-term meds.
So … since hundreds, maybe thousands, of people have already been put through withdrawal and observed, could these studies give us useful information if we could dig up the raw data? Or, because the “wrong question” was being asked, are the observations likely to be useless? (For one thing, probably none of them included a group of people who took placebos for both parts of the study.) Since we’re unlikely ever to get either the funding or the volunteers to do more such studies, and might conclude they’re cruel and unethical anyhow, it would be nice if the experiences of so many people already put through this in randomized trials did not totally go to waste.
annie says
An attempt to sue the gp led the legal eagle gp to say ‘the first withdrawal did not go so well.’
……………………………………………….duh??
‘In the circumstances, the gp did everything that was expected of her.’……………..duh??
Lie about not giving me Fluoxetine; not tapering me………..
This is the Rxisk blog we have all been waiting for….
Anyone, out of the loop, of ssri withdrawal, has not a clue and, regrettably, it is impossible to sue a gp or psychiatrist for a potential case of culpable homicide when the ‘guilty’ have a legal eagle gp completely on their side.
No research from the legal eagle gp.
I expected a certain amount of difficulty, I did not expect a total rebuff…..
I have experienced life threatening withdrawal from abrupt withdrawal from Seroxat, I have then experienced withdrawal from valium and ativan with no taper whatsoever.
There is no comparison between ssri withdrawal and benzodiazepine withdrawal.
When I did all this, all by myself, did I ask for help?
I did not……………..there wasn’t any help and there was no point in asking.
I was hitting a ‘brick wall’ and I knew it.
For ten years I have had chronic tinnitus, something resembling a peculiar type of ME, in which my body depletes itself irrationally and randomly of energy and I have to sleep.
This is the legacy I have been left with, and because I still get ‘occasional head zaps’, I am not out of the woods yet ‘with withdrawal’.
I have been seriously abused with ssris and benzodiazepines and I have been seriously abused by, so many, ‘out of the loop’.
I deal with it; I comment……..about it………….
Irene Campbell-Taylor says
I do not know Dr Ternov so this is not aimed at him specifically. It is becoming clearer that prescription of and withdrawal from psychotropic drugs must be considered differently in obese patients. Drug prescription for overweight patients is difficult since dosages are based on pharmacokinetic data obtained in normal-weight individuals. In obese patients, physiopathological modifications are likely to affect drug tissue distribution and elimination. Body constitution is characterised by a higher percentage of fat and a lower percentage of lean tissue and water. Blood flow per gram of fat is less than in nonobese individuals. Because of the increasing worldwide incidence of obesity, there is a need for more information regarding the optimal dosing of drug therapy to be made available to clinicians. This is usually provided via clinical studies in obese people; however, such studies are not available for all drugs that might be used in obese subjects. Many if not most psychotropic medications are lipophilic and thus, stored in body fat in particular, brown fat. This accounts in part for the slow response time or onset of effects in some patients and the need to titrate doses up or taper down slowly. It also explains the slow withdrawal from some medications and the continuation of effects for a period of time even after the medication has been discontinued. Patients with a BMI of over 27 should be more closely monitored during withdrawal and warned that it may very well take much longer for the drug to be fully excreted. Prediction of the effects of obesity on drug clearance, should be included in the design of clinical studies during drug development and in dosage adjustments that are likely to be needed in clinical practice.
One does not actually have to be obese for withdrawal syndrome to be long as all body fat is likely to be infiltrated but clearly, the obese patient will have more difficulty in clearing the drug and experiencing distressing symptoms.
Lindy says
The obese are not the only poor metabolisers of medication. My family as a whole is highly sensitive to medications of many types. Some are highly sensitive to the point where one Panadol in an adult male or female weighing 70kg will do the work of two in a normal individual. In short, we need far smaller doses than most other people.
Others, my sister in particular, have experienced anaphylaxis across a range of medications.
I was put on doses of SSRI/SNRI medications that, on reflection, were far too high (for example, Effexor-XR at 225 – 300mg daily).
I think it’s important that patients are more closely monitored in order to achieve optimum results from the least possible medication, rather than throwing large doses at individuals just because their depression/anxiety/PTSD is severe.
My other thought is that perhaps patients should be quizzed more closely as to any drug sensitivities experienced by themselves, or immediate relatives.
As an aside, with respect to Dr Turnov’s experience while driving during the withdrawal period, the World Health Organisation advises doctors to warn patients not to drive during this time due to potential visual disturbances (skewing). I experienced visual skewing during withdrawal, which meant it was some weeks before I could even ride a bicycle safely.
Johanna says
More experiences from doctors … these are from a February 2010 Medscape article, which summarized the chat on their physicians-only discussion board. They cover suicidal thoughts, emotional numbing, and withdrawal symptoms (on Effexor):
“An internist who frequently prescribes SSRIs, reports that she repeatedly experienced suicidal thoughts while taking an SSRI for depression. “I have been placed by my physician on Lexapro® 3 times. In each instance, my mood lifted and crying decreased. I could sleep. In 3 days’ time, I started having thoughts that came out of the blue, such as ‘I want to drive off this bridge.’ Stopping the medication stopped the thoughts.” She says that she tells her patients about this potential side effect, but no patient has related having a similar response.
“SSRIs and then SNRIs [serotonin noradrenaline reuptake inhibitors] nearly killed me,” says an obstetrician/gynecologist. “They caused narcolepsy, and I fell asleep and drove off the road.” He comments that his level of apathy while taking the drugs was so extreme as to appear parkinsonian. “In my opinion as a patient, mild to moderate depression should be treated by cognitive behavioral therapy, not meds.”
A surgeon comments that, in many cases, SSRIs are given to patients who are only mildly depressed. “The drugs are given as mood elevators,” he says. “We essentially are giving out the drug for the same reason people self-medicate or abuse alcohol.”
A neurosurgeon comments that clearly there are a number of questions about SSRIs that need to be addressed:
•Should we treat mild depression knowing the risks?
•Are we educating patients about the possibility that they will experience apathy?
•Are we increasing the risk for substance abuse in patients who attempt to counterbalance induced conditions of apathy and boredom?
•Are the artificially high levels of serotonin caused by the use of SSRIs chronically changing the brain and making it impossible to withdraw from these drugs?
“I agree that higher doses and long-term use does blunt emotions,” says a pediatrician. “I used Effexor® for about 7 years and tried to wean off during that time, but at very low doses would redevelop extreme sadness that resolved when I upped the dose.” He says that working with his psychiatrist, he switched to Wellbutrin® and now experiences a wider range of appropriate emotions. “However, if I did not have another option, I would prefer Effexor® side effects over the chronic anxiety and sadness I experienced for much of my life without it.”
Altostrata says
In English, I believe the “head bangs” are commonly referred to as “brain zaps” or electrical feelings in the head. In the literature, they are subsumed under parasthesias.’
They are thought to be related to Lhermittes sign, see http://tinyurl.com/aczfu7v
There are hundreds of published papers on SSRI (and other antidepressant) withdrawal syndrome. Dr. Ternov may have had difficulty finding them because the nomenclature is not standard. Searching on “SSRI discontinuation,” “paroxetine discontinuation,” “sertraline withdrawal,” etc. and all permutations will find them in PubMed.
Searches on authors such as Peter Haddad, Richard Shelton, and Alan Schatzberg will yield papers with extensive citations in the area of antidepressant withdrawal syndrome.
I’ve collected a number of papers on antidepressant withdrawal syndrome here http://tinyurl.com/aqg3bjo
Johanna says
The connection to Lhermitte’s sign is really interesting. I’ve usually heard of this as a sign of a serious cervical spine injury – bending the head forward causes a shock-like sensation to go up your neck and down your spine, sometimes into your arms. Maybe someone who’s experienced “brain zaps” could tell me: does it feel like it’s in your neck too? Did you ever notice that it came on when you looked down or bent your neck? I found at least one other medical journal reference to “Lhermitte’s sign in paroxetine withdrawal” – a letter by Reeves and Pinkofsky in the Journal of Clinical Psychopharmacology – so there are more than a few people who think “brain zaps” and Lhermitte’s sign may be the same thing.
What occurs to me is that this could be a useful marker. Take a look at other conditions in which Lhermitte’s sign appears, and maybe they will offer some clues as to what is going on in antidepressant withdrawal – and what might help? Lhermitte’s can show up in both Vitamin B12 deficiency and Vitamin B6 toxicity – and both these vitamins are apparently involved in converting amino acids to serotonin and other neurotransmitters. I doubt that withdrawal is simply a question of too much B6 or not enough B12; the withdrawal symptoms could be mimicking these nutrient problems by causing similar effects on neurotransmitters. Still, even that could give us clues.
Maybe I’m just trying to tie up too many things in the same neat little package, but it don’t hurt to ask. Anyone?
Lindy says
This morning I woke in the grip of yet another tardive dystonic storm. My left hand (i’m left-handed) is making gross oscillating/whisking movements. The right hand is a tangled clump of fingers. Meanwhile, the titubation (nodding) is gaining pace.
I was told, by an eminent NZ psychiatrist, that TD could get better with, or without, treatment. My new GP took one look and began reinventing the wheel, soothingly telling me how far medicine has come in the past 10 years.
While I’m endeavouring not to panic, this worsening may spell the end of my writing career. Everyday tasks require devising a new approach to everything I do. I can not lift a tea cup to my mouth using my forearm. It now requires lifting the shoulder and upper arm.
It took me 20 minutes to do the dishes (breakfast and coffee for two), I hit my head repeatedly with my hairdryer and gouged my gums with my toothbrush. Washing my hair was both painful and difficult.
My doc is lovely and well-intentioned, he tells me I’m “young” at almost 58 to be in this mess. But my fear of taking any new medication is now so great after the SSRI/SNRI experience, I don’t think I could open my mouth to swallow anything new.
I’m sorry that doctors have also become victims – at the same time, I confess to feeling glad: their experiences give the rest of us a sad kind of credibility.
SC says
After stopping my SSRI and ecperience debilitating anxiety physically and mentaly, I looked for answers and landed here. I filled the questionaire with a pounding heart. I made an apointment with my doctor. She refused to fill the form and I think she was right. It’s truning into a witch hunt. I am reinstating an SSRI and feeling much more myself already. I did have some withdrawl symptoms, like insomnia and a few brain zaps, but the anguish was my generalised anxiety returning with a vengence, after years of being under control with SSRI’s. I think they do help a lot of people and although I hate having to take them, I could not live a full life without. Psychotherapy helps but it doens’t do everything. SSRI’s are not evil. I agree too many people take them without needing them, but some of us do need them. I’m glad they exist.
Laura says
I have been on Effexor XR since for 13 years. I started with 75mg/day, and after 2 years slowly began to ween myself off. I realized that at 37.5mg/day I had no depression. Within a day after I was completely off my depression symptoms hit me severely. It was night and day. I dreaded those old feelings and panicked. I went back on the 37.5mg/day capsule and have continued ever since. My Dr told me I “needed this like a diabetic needed insulin”. I desperately want to get off this med (as well as the .5 mg Clonazepam I use to sleep) and was planning on slowly weaning off again this May, but then I came across this article. Now I am scared to death. I did it successfully with my elderly mother. She started with 75mg effexor XR and we just bought veggie caps and counted the “beads” in the capsules to withdraw her over a period of 2 months. She hadn’t been on the med for as long as I, but it was a success. I had been hopeful of doing the same thing for me. I have a son with kidney disease and I need to be drug free so I can be a donor. I need to find a way to do this, and if anyone has any suggestions or positive stories, I would be most appreciative if they shared them!
Miranda says
Medical practitioners have a professional responsibility not to prescribe these medications long term. If prescribed at all, SSRI’s should be administered for as short a period as possible. I have been left on anti-depressants for a staggering 24 years and GP’s and psychiatrists have never ever suggested withdrawal. I consider this negligent and unprofessional. These professionals enter their profession with a desire to cure their patients. I have now decided to withdraw from my SSRI’s and have even been refused psychology (talking therapy) to aid my withdrawal. We now know that these medications can cause long term medical problems, even a shortened life span, so naturally, it seems to me they would rather kill than cure. How can medical practitioners swear allegiance to the Hypocratic oath and still treat their patients this way?
Lisa says
My feeling is that this is a direct result of inadequate testing of long-term effects of drugs prior to them being approved for human use. If long-term effects aren’t measured in trials, clinicians can’t communicate risks to service users. That being said, I, too am one of the unlucky mass who was prescribed SNRIs almost 10 years ago and now stand little hope of ever getting off them due to withdrawals. What I find unconscionable is that doctors attribute the symptoms of withdrawals to the underlying illness, rather than listening to service users who are the real experts. Sad that it takes a doctor personally experiencing these symptoms for withdrawals to be acknowledged as a legitimate problem.
Stephen says
As much as I hate to read everyone’s poor experiences with these drugs, I am also a little relieved. I stopped taking Zoloft/Lexipro cold turkey about 3 weeks ago after a horrible, life-altering experience at a mental health institute. I have been experiencing the brain zaps with audio hallucinations. (Banging, doors closing, etc..) my moods change minute to minute and it’s tearing my life apart. I initially started on 50mg of Zoloft for OCD and mild anxiety. Since stopping the meds after 4 years, I am now constantly asking myself why I even bother to live. These meds destroyed my life. I hate what I’ve become.