Shooting the Odds, Part III

Stuart Shipko, MD
22
839

My prior MIA blog posts have largely addressed the problems that can occur when people try to stop taking serotonin-related antidepressants, particularly  after taking them for a long period of time. I wanted to share a few updated thoughts that I have on the problem.

Protracted withdrawal needs a better name.  The term “protracted withdrawal” does describe the time sequence  of symptoms after stopping serotonin based antidepressants, but is a poor choice of language when discussing this with your doctor.  Medicine does not recognize such a thing as protracted withdrawal.  Withdrawal is considered something that goes away within days or weeks of stopping a drug.  If you are going to talk to your doctor about these sorts of problems, then it is best to describe the problem as symptoms that happened after stopping the drugs.  I realize that many physicians will declare these new symptoms the start of a new mental illness – usually bipolar – but calling it protracted withdrawal just confuses the doctor.  Although I refer to protracted withdrawal as drug neurotoxicity, it is still a bad idea to give the doctor a diagnosis rather than to present symptoms.  It’s just the way that doctors work.  They want to make the diagnosis and often feel put off by patients who present with a complaint and a diagnosis.

On the other hand, doctors are increasingly influenced by information from the Internet which is told to them by patients.  They generally do not want to see a lot of printed off pages, as there is no time to really read them during the office visit.  Even with a good attitude and linguistic strategy, going back to the prescribing doctor is often futile.  When confronted with a patient who has any sort of emotional problem – even if it is a side effect of drugs –   the doctors tend to pull out a prescription pad and want to try one drug after the next in hope of being helpful.

The consequences of reinstating the same drug or starting similar drugs are highly variable.  Sometimes the patient returns to a comfortable baseline and sometimes they get incrementally worse with each new drug.  Even when reinstatement results in resolution of symptoms, it is unavoidable for the patient to be thinking about how uncomfortable it is to be taking a drug that created the problem in the first place.  Obviously whatever damage the drug did before is going to be increased over time.  So what will the next 10 years do to the nervous system?

Problems related to stopping SSRIs after long term use are becoming more common in my practice.  People on the SSRIs for years with no noticeable symptoms often decide that they don’t need the drug and decide to stop taking it.  After all, they were told that the drug isn’t addicting, and were never warned that there could be problems stopping it.

Experiencing a fairly rapid and severe ‘akathisia’ like syndrome, usually  a few months after the last dose is fairly common.  I put the word akathisia in quotes because it’s really difficult to describe exactly what it is that happens and the full toxicity syndrome has not been formally described.  Akathisia is probably the best term to describe what is going on, however, akathisia is primarily considered a movement disorder that comes with a subjective feeling of inner restlessness.    Sometimes I do see the typical pacing and motor restlessness of akathisia, but not usually.  Like akathisia, the discomfort is extreme and impairing.  In fact, the SSRI toxicity related symptoms appear much more uncomfortable than even serious anxiety or depression unrelated to SSRIs.  Some describe it as anxiety and some as depression, but typically it has a fairly abrupt onset and is worse than anything previously experienced.  The patients seem to be unable to describe it except to say that it is extremely uncomfortable – crawling out of my skin.  My suspicion is that patients are reluctant to talk about how they feel because they are having suicidal thoughts and fear the possibility of involuntary hospitalization.  Akathisia is probably the best term currently in use to describe the syndrome of late onset and persistent withdrawal symptoms, but  these symptoms need to be better categorized, studied, and described.

The phenomenon of late emerging, intractable withdrawal related symptoms occurring after a period of months with no problems seems to be widely recognized by patients, but has never been studied and is unknown to physicians.  Increasingly it is the tardive, or late onset withdrawal related problems that bring patients to my office.

Often patients are down on themselves because they believe that their problems relate to having tapered too rapidly. It seems like a lot of the same problems occur in people who stop slowly and those who stop abruptly.  That having been said, I have been doing some ultra slow tapering.  In my last blog I wrote about a man stopping Effexor after a 14 year exposure. We tapered from 150 mg to 0 mg from 2012 until early 2015.  This patient never had any acute withdrawal symptoms, no symptoms after stopping the last dose and no late onset symptoms 7 months after the last dose.

Since there are so few tools to use for people who want to stop the serotonin related antidepressants, ultra slow tapering might be useful.  By ultra slow, I mean tapering at a rate so slow that there are no discernible symptoms at each dosage cut.  For example, I have a patient who has been on 40 mg of Paxil for 15 years, and we started by cutting down by 1 mg a month.  In this sort of tapering, if there are any withdrawal symptoms on the dosage cuts, we go back to the last comfortable dose, and stabilize before making another cut – which might be a lower dose cut.  It will be years before I know if this is useful or not, but in the meanwhile, my patients are working and living a normal life while tapering instead of suffering and being disabled, as is so often the case.

Patients who are having toxic withdrawal related symptoms almost always want to know how long it will last.  There is no good answer for this question, but the time frame is going to be in the realm of months and years and not days or weeks.  This is an important issue for the person who is highly debilitated by symptoms.  If a person is disabled and unable to function at work or to socialize, then it is probably not a great idea to wait indefinitely for it to go away.  Reinstatement of the drug, or use of a benzodiazepine – while not ideal, may be worth the risks.

I note that a lot of people are seeking the “antidote” for the withdrawal related symptoms.  Reinstatement and benzodiazepines can help with symptoms, but do not reverse the process.  As it stands there is no antidote, and absent an understanding of the pathology involved, this is unlikely.  Perhaps one day the problem will be studied and understood in such a way that an antidote can be found that will take away all of the withdrawal related problems.

In the meantime, I want to emphasize that rehabilitative related treatment is useful in improving symptoms.  Recently I saw a person who had to drop out of college for the semester because they could not concentrate enough to do the computer programming needed for classes.  As a rehabilitation strategy, the person was encouraged to do some similar type of programming every day.  It was a slow start, but it looks like this person will resume school next month.  Staying in bed and resting in hope that the problem will go away may not be as good as forcing oneself to engage in exercise, socialization, proper diet, meditation, spiritual activities and work like activities.

22 COMMENTS

      • Are they your blogs? Do you know who created them?

        The links are to personal blogs created by someone who seems to be angry at Dr. Shipko. Maybe they were harmed by his advice or feel slighted by him. Do you know why they were created?

        Many of the links don’t work. One of them goes to a page on UA.edu that requires special access privileges. Unless that’s a recent protection, it implies that whoever made the blogs is among those allowed to access the page, which is:
        https://bama.ua.edu/~jhooper/people.html

        There’s a professor James Hooper from UA (University of Alabama) who was arrested on drug trafficking charges this summer. Is this something to do with him? I guess his arrest might be the reason the page can’t be viewed at present. Maybe it was freely viewable by all when the anti-Shipko blogger linked to it.

        The blogs contain no information that indicates there is anything wrong with Dr. Shipko’s credentials or competence. There are links to two criminal cases in which Dr. Shipko apparently testified as an expert on the effects of certain psychotropic drugs. He correctly testified that psychosis and extreme, unprecedented violence can occur when people take these drugs, change the dose, or discontinue the drugs. There are warnings about violence that accompany SSRI antidepressants, so he is not exactly on the fringes with such testimony, though he might have been ahead of his time, given the age of the cases.

        In one case (Shellhouse) he stated that a he was not an expert in forensic psychiatry. The defense hired him anyway; that is a failing of the defense, not Dr. Shipko. Dr. Shipko is an expert on the effects of SSRIs, however, so discrediting his testimony simply because he has no background in forensics was a semantic play, not a valid one. The pills don’t care if you’re arrested or not.

        Contrary to what the blogs imply, SSRIs are known by the FDA to cause violence. This is from GSK’s medication guide for Paxil:

        Call your healthcare provider right away if you have any of the following symptoms,
        or call 911 if an emergency, especially if they are new, worse, or worry you:
        • attempts to commit suicide [which is a violent act]
        • acting on dangerous impulses
        • acting aggressive or violent
        • thoughts about suicide or dying
        • new or worse depression
        • new or worse anxiety or panic attacks
        • feeling agitated, restless, angry, or irritable
        • trouble sleeping
        • an increase in activity or talking more than what is normal for you
        • other unusual changes in behavior or mood
        (I added the emphasis on four items.)

        See the document here:
        http://www.fda.gov/downloads/drugs/drugsafety/ucm088676.pdf

        Ally, do you share the blog-creator’s ill-will toward Dr Shipko? Do you have some experience with him that you think people should know about? It would be better to come out with it than to link to those blog posts. They don’t accomplish the harm to Shipko’s reputation that they apparently aim for.

  1. Dear Dr Stuart
    I like your description of Akathesia, it is very appropiate. The restlessness is certainly uncomfortable but it’s the unreliable (chemical) state of mind that’s the most dangerous.

    When I was in this state I didn’t know what it was and I had no way of knowing it would ever end. It was a very, very high risk and dangerous state to be in.

  2. I had off the charts Akathesia for years when on psychiatric drugs, the restlessness, up all night pacing and my psychiatrist diagnosed my symptoms as bipolar. I had no idea what Akathesia was or that I had it till a change consult with neurologist. To this day I can’t fathom the psychiatrist not seeing my body movements and obvious unrest but the truth is he had quit seeing me at all during the Med Checks.

    I tapered too rapidly of numerous psyche drugs not knowing any better. It was a hellish ride. I need to add the psychiatrist was perplexed at how I no longer fit the diagnoses he had given me. He couldn’t fathom the drugs were the culprit.

  3. Dr. Shipko,

    Lots of us having success w/ microtapering SSRIs.

    i.e. dropping the liquid Prozac into a measured (w/ a syringe) amt of water and removing a microgram amount via syringe per day. As long as you know your drug to liquid ratio and then how many mLs you’re removing daily, you can remove any “cut” size daily you’d like. The concept is that if you want to remove 1mg per month, it is much more gentle on the brain and CNS to remove 0.0333333mg per day instead of dropping by 1mg at a time and waiting a month or more while suffering in hopes of stabilizing. So long as the person stops right away at the first sign of w/d sx, holds at their current “cut” until the w/d resolves and they stabilize, then adjusts (to make smaller) their daily cut size when starting up again if it needs to be reduced, it is largely tolerable and keeps people out of w/d (the person doing it really has to listen to their body- if you “push through” worsening symptoms- which are a sign you need to stop/slow down the rate, you will deteriorate and continue going downhill).

  4. I had relentless feelings of doom, dread and regret for at least a year. It was satanic. Sleep was a myth, a rumor, a luxury others had but didn’t appreciate.

    After a while it was still daily, but wore off somewhat in the afternoons, to become mere misery and regret and worry, until I took something that would let me fall asleep. Awaking before 5am with a pounding heart continued.

    The mornings were ungodly. I don’t know why I survived it.

    I know HOW I survived. I didn’t kill myself.

  5. Thank you for this piece. As one of the, apparently millions of, people who had the common withdrawal symptoms of an antidepressant (in my case the “safe smoking cessation med,” Wellbutrin) DSM-IV-TR misdiagnosed as bipolar, I greatly appreciate your helping wean people off these atrocious drugs, and helping to educate the medical community.

    I appreciate your mentioning the akathisia, as that was, and still is 15 years later an issue I still deal with, albeit it is a fairly mild symptom at this point. I also still suffer from brain zaps, although it seems uncommon for this antidepressant withdrawal symptom to last this long, based upon my research.

    My understanding from my current doctor is there is still no known cure for that long run withdrawal symptom. I will mention my doc was surprised by one of the “benefits” of this annoying withdrawal symptom, however, and I’m wondering if you’ve ever run into any other patients who’ve found that they can immediately “brain zap” a headache away, which I am able to do?

    • I hope Dr. Shipko answers you. That’s really interesting. Do you wait for a zap or san you trigger one?

      I had something similar. I kept going to emergency in the wee hours–every couple of months–with upper abdominal pain and relates symptoms I thought would KILL me, and I’m tough. There was no obvious cause but we blamed a big non-elective GI surgery. I had gone off Effexor, which was not for a mood disorder, after the surgery, when nurses forgot to give it to me, but we didn’t think of that. (I too got a fake bipolar tag out of that mess.)

      But this was two years after that. My idiot psychiatrist still thought I was bipolar even though any drug I took was a disaster, and I was wrecked with akathisia from heaven knows what? Abilify? which she didn’t recognise and I’d never heard of, so she put me back on Effexor. The last emergency event was after I’d been back on Effexor briefly (I can’t recall how it affected me) and then tapered off for a month. Subjectively I felt fine, but I had an attack of the pain/emesis/hypotension/sweating so bad that once I got to the emergency room, I fainted and had some kind of massive violent seizure with loss of consciousness, and a bad concussion.

      I now have a painful injury that physical therapy can’t touch and some depth perception problems, but four years later I’ve only had one “attack,” and I was able to tough it out at home; I’d call it a 60% strength one, and it was during the day, not at 1am.

      So, I don’t know if the stories are all that similar, but they both pertain to untoward brain events making something not happen or not hurt.

    • I don’t know about brain zaps but the restless leg syndrome from Zyprexa/Seroquel is supposed to go away immediately after you stop the drug. It doesn’t. I had to deal with it for over a year until I managed to get rid of it with magnesium and iron supplements. Nonetheless it still comes back in a mild form at times and I have to return to supplements. I never had this before the drugs and it was clearly drug-related symptom. It’s a horrible feeling that you constantly have to move your legs and you can’t sit still or fall asleep. Combined with extreme tiredness from these drugs it’s real torture.

    • Hi Someone Else, I read your comment and I am interested to hear more about your experience. Are you saying you still experience symptoms even 15 years after stopping an SSRI? I assume it was worse in the early period of withdrawal. Did you notice gradual improvements over time? I always assumed the brain zaps were a short term thing.

  6. B, it IS horrible. But who told you it was supposed to go away when you stop the drug? Sometimes it does, sometimes it doesn’t. But I’m thinking of akathisia. For lots of people it starts after they stop the drug. Some descriptions of akathisia say it mainly affects the legs (and the mind).

  7. Like most people classified as Bipolar 1 (lol), my history with SSRIs is a bit scary. However, it was your mention of toxicity that caught my attention. My daughter has a history of self destructive behavior (she lives in Florida with her father) but I was still shocked when my ex called to tell me she had run away in the middle of the night, taking her grandparents cell phones but not hers, her grandmother’s laptop (no charger etx), their debit card, and a handful of cash in her pajamas and slippers. She called five hours later crying and asking her dad to pick her up. He was… he blames her. When I spoke to her, her speech was erratic. She admitted to have the debit card and to having the 200$ taken from her grandparents account, but she couldn’t tell the story in order and didn’t seem to know how she got the money out… only that she had. She had no idea what she did with it. They had just upped her zoloft several days before, and she kept saying that someone was chasing her which is why she left the house.

  8. Acidpop, that must be so hard on your daughter, if she thinks that was her, and not Zoloft. I’ve never had Zoloft, but SNRIs can do the same thing. It’s like your mind is absent, and you react to things like a cartoon character, not the person whose judgement and character you’d been working on your whole life.

    It’s a shame the money-research people (think Jeff Lieberman, Tom Insel) discount the character-warping aspects of these drugs. Understanding how the warping happens would tell us a lot about philosophical questions those guys never think of asking.

    Too often the dose is raised in response to intolerable side effects, like agitation, which is misread as anxiety. Do you know why someone upped her dose, from her point of view? (I’d sure like to hear what her doctor has to say about what happened.)

  9. I have a lot of theories about that decision, but I try not to be critical. Her father tried to have her committed, but the doctors who assessed her said there was no cause. However, they did find cause to contact DHS about her father’s violent tendencies. She requested to be sent to a facility in Orlando, and the first thing they did was take her off the Zoloft.

  10. We all knew this long ago. Its been known for many years that one must taper off these drugs extremely slowly. Have a look at SurvivingAntidepressants.org
    Paxilprogress also informed users to taper off 10% every 6 weeks and to go even slower 5% when reaching lower dosages.

    The real thing Doctors need to figure out is: How to TREAT protracted Withdrawal Syndrome caused by rapid taper off these drugs. Because i can guarantee you, there are thousands of people suffering severely because they did not know how to come off these drugs.

    Work on a treatment plan please because i am one of many who are in severe protracted withdrawal for many years.
    These drugs have taken my precious life. 3 years in severe suffering with minute inprovements. This is no way to live.
    Have a look at my blog for a list of symptoms. Its iwontgiveuphope(dot)weebly(dot)com.