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The Evidence of the Anecdote

The foundation of medical decision-making is “evidence-based medicine.”  As most readers know, this is the effort to use the best available evidence (using the scientific method) to make decisions and recommendations about how to treat individual patients.  “Evidence” is typically rated on four levels (1 to 4).  Level 1 represents high-quality evidence—usually the results of randomized clinical trials—while level 4 typically consists of case studies, uncontrolled observations, and anecdotal reports.

Clinical guidelines and drug approvals typically rely more heavily (or even exclusively) on level-1 evidence.  It is thought to be more valid, more authoritative, and less affected by variations among individuals.  For example, knowing that an antidepressant works (i.e., it gives a “statistically significant effect” vs placebo) in a large, controlled trial is more convincing to the average prescriber than knowing that it worked for a single depressed guy in Peoria.

But is it, really?  Not always (especially if you’re the one treating that depressed guy in Peoria).  Clinical trials can be misleading, even if their results are “significant.”  As most readers know, some investigators, after analyzing data from large industry-funded clinical trials, have concluded that antidepressants may not be effective at all—a story that has received extensive media coverage.  But lots of individuals insist that they do work, based on personal experience.  One such depression sufferer—who benefited greatly from antidepressants—wrote a recent post on the Atlantic Online, and quoted Peter Kramer: “to give the impression that [antidepressants] are placebos is to cause needless suffering” because many people do benefit from them.  Jonathan Leo, on the other hand, argues that this is a patently anti-scientific stance.  In a post this week on the website Mad In America, Leo points out (correctly) that there are people out there who will give recommendations and anecdotes in support of just about anything.  That doesn’t mean they work.

Both sides make some very good points.  We just need to find a way to reconcile them—i.e., to make the “science” more reflective of real-world cases, and use the wisdom of individual cases to influence our practice in a more scientifically valid way.  This is much easier said than done.

While psychiatrists often refer to the “art” of psychopharmacology, make no mistake:  they (we) take great pride in the fact that it’s supposedly grounded in hard science.  Drug doses, mechanisms, metabolites, serum levels, binding coefficients, polymorphisms, biomarkers, quantitative outcome measures—these are the calling cards of scientific investigation.  But when medications don’t work as planned (which is often), we improvise, and when we do, we quickly enter the world of personal experience and anecdote.  In fact, in the absence of objective disease markers (which we may never find, frankly), psychiatric treatment is built almost exclusively on anecdotes.  When a patient says a drug “worked” in some way that the data don’t support, or they experience a side effect that’s not listed in the PDR, that becomes the truth, and it happens far more frequently than we like to admit.

It’s even more apparent in psychotherapy.  When a therapist asks a question like “What went through your mind when that woman rejected you?” the number of possible responses is infinite, unlike a serum lithium level or a blood pressure.  A good therapist follows the patient’s story and individualizes treatment based on the individual case (and only loosely on some theory or therapeutic modality).  The “proof” is the outcome with that particular patient.  Sure, the “N” is only 1, but it’s the only one that counts.

Is there any way to make the science look more like the anecdotal evidence we actually see in practice?  I think not.  Most of us don’t even stop to think about how UN-convincing the “evidence” truly is.  In his book Pharmageddon, David Healy describes the example of the parachute:  no one needs to do a randomized, controlled trial to show that a parachute works.  It just does.   By comparison, to show that antidepressants “work,” drug companies must perform large, expensive trials (and often multiple trials at that) and even then, prove their results through statistical measures or clever trial designs.  Given this complexity, it’s a wonder that we believe clinical trials at all.

On the other side of the coin, there’s really no way to subject the anecdotal report, or case study, to the scientific method.  By definition, including more patients and controls (i.e., increasing the “N”) automatically introduces heterogeneity.  Whatever factor(s) led a particular patient to respond to Paxil “overnight” or to develop a harsh cough on Abilify are probably unique to that individual.

But maybe we can start looking at anecdotes through a scientific lens.  When we observe a particular response or effect, we ought to look not just at the most obvious cause (e.g., a new medication) but at the context in which it occurred, and entertain any and all alternative hypotheses.  Similarly, when planning treatment, we need to think not just about FDA-approved drugs, but also patient expectations, treatment setting, home environment, costs, other comorbidities, the availability of alternative therapies, and other data points or “independent variables.”  To use a crude but common analogy, it is indeed true that every person becomes his or her own laboratory, and should be viewed as such.

The more we look at patients this way, the further we get from clinical trials and the less relevant clinical trials become.  This is unfortunate, because—for better or for worse (I would vote for “worse”)—clinical trials have become the cornerstone of evidence-based psychiatry.  But a re-emphasis on anecdotes and individual cases is important.  Because in the end, it’s the individual who counts.  The individual resembles an N of 1 much more closely than he or she resembles an N of 200, and that’s probably the most important evidence we need to keep in mind.

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23 Responses to The Evidence of the Anecdote

  1. Widespread clinical experience in a variety of locations with a wide variety of different patient populations is hardly the same as an “anecdote,” and is often more accurate than a randomized controlled study. That’s why side effects that don’t show up in an RTC are discovered in clinical populations once the drugs are widely used.

    In fact, it can be argued that RCT’s RELY on anecdotes, because that’s what self-report measures and the observations of the experimenter are in this case. They are not objective, but entirely subjective.

    “Addendum to Einstein’s famous quote, ‘NOT EVERYTHING THAT COUNTS CAN BE COUNTED, AND NOT EVERYTHING THAT CAN BE COUNTED, COUNTS:’ …and even if it counts and can be counted, your self-report measure might not count it very well”. ~ Neuroskeptic

  2. Nathan says:

    Dr. Allen,

    I hear and use the Einstein mantra all the time in my work as a program evaluator. However, I think our interpretations of it and how we use it is somewhat different.

    While I agree that not everything that counts can be counted (or at least counted well or yet), I tend to emphasize the second half of the saying (while you seem to be emphasizing the first half), making the point that often people use unhelpful or invalid indicators as outcome measures just because they are easy data to gather even though they tell us nothing/little about outcomes. Some people also mistake process data for outcome data (time spent in therapy, prescriptions written, extent of adherence to medications, etc.), because process data is often much easier to discreetly measure and collect. Process data is equally important as outcome data, but they don’t contribute to answering the question of “did something important or helpful happen?”

    I also believe that just because not everything that counts can be counted we shouldn’t endeavor to find meaningful indicators for many outcomes nor that we cannot design studies that examine what might cause or support robust outcome.

    As Dr. Balt notes in his post, evidence comes at variant qualities, and sometimes we are not in position to collect the best quality evidence. This doesn’t mean that we should ignore evidence, but collect the best evidence we can and understand that our confidence in it is limited (but it beats no evidence). An example related to your response: FINDINGS from widespread clinical experience that is systematically tracked and analyzed is different than EXPERTISE developed from having widespread clinical experience. The former, while limited in conclusiveness, reduces some bias and allows for potentially novel understandings and somewhat informed heuristics. The latter is prone to a lot of bias, inconsistent heuristic thinking, and often greater likelihoods of plain false understandings (ex. Leaching is helpful for psychosis recovery, obstetricians don’t need to wash their hands before delivering babies or between seeing patients, etc.).

    I agree with Dr. Balt clinical trials have been given a lot of exclusive prominence just because they are clinical trials. This makes me angry because so many of the pharmaceutical funded trials are just so poorly conducted that their results cannot be taken as conclusively as doctors and psychiatrists have (it really does make me question the value of scientific training doctors receive and scoff a bit when that is used as a rationale for doctors’ decision-making power). For example, placebo washouts, poor and inconsistent screening of participants (not often clinical populations on all sorts of dimensions), not enough information collected about participants themselves, too many participants included to reduce amount of change in outcome measures to show significance between control and experimental groups, lack of systemic collection of adverse events, data omitted from analysis, and skewed conclusions taken as fact plague these trials. The caveat, or rather the most important part of RCTs as strong evidence research strategies is that they are conducted and reported on well. RCTS have to be quality for them to be considered quality evidence. I would consider many evaluation studies or systematic qualitative studies much more helpful than many of the RCTs that have been pointed to as strong evidence. I still believe that well-conducted RCTs can tell us a great deal about particular things with confidence, and just because all measurement is subjective (even in hard sciences, as we have previously discussed), it doesn’t mean that it is not useful or that “anecdotes” are equivalent to quality RCTs in weighing strength of evidence, but you have to examine outcome measures critically and not take them out of context or generalize them past their limits.

    • Nathan,

      You seem to think I don’t agree with everything you said. I’m not arguing that we shouldn’t do clinical trials, or that they are not essential, just that those are not the ONLY valid form of evidence, and that they can be every bit as biased as clinical lore. Both clinical trials and clinical experience can be examined for sources of bias, alternate explanations for the data that were not even considered, etc. I went over a whole list of criteria for evaluating clinical “anecdotes” in my last book.

  3. Nathan says:

    Dr. Allen,

    It seems we agree a great deal then. The point of of well conducted experiments is that they can limit bias and can make remaining biases more overt. This is helpful in making clearer and more useful decisions about their applicability and generalizability. I value strong scientific inquiry more than strong clinical “anecdotes.” I also believe there is a lot of valuable research in between those methodologies.

    I just ask for psychiatrists and other doctors (clinicians and researchers) to demonstrate critical analysis of research (no matter the format) that underpins their fields, recognize and be honest about their strengths and limitations, and act/intervene with patients accordingly. I’m even ok with doctors having strong faith in their interventions despite lack of quality evidence as long as they make that clear and let folks using or paying for services make their own decisions of whether they want such interventions. I just don’t see this a lot. What I do see is junk science revered, personal biases and beliefs pushed forward onto patients and policy makers as if they were evidence, a mental health field that costs way too much, one empowers people who don’t show ability to use and assess research accordingly to make invasive decisions about other people’s lives, has not really led to much sustained, long-term outcomes in health, and may have caused a host of other health problems.

  4. Altostrata says:

    I think Nathan’s point that RCTs in psychiatry are not trustworthy is an important one.

    What’s more, clinical trials designed to show drug efficacy capture adverse event information only in passing. If the scoring instrument does not have entries for adverse effects, they don’t exist.

    Perforce, the adverse effect profiles for psychiatric drugs over the last 20 years are incomplete. By necessity, unanticipated events show up first in “anecdotal” reports. See this review from Harvard Business School of how Vioxx dangers were revealed http://www.hbs.edu/research/pdf/09-122.pdf

    What’s remarkable is psychiatry so stubbornly refuses to look into patterns of anecdotally reported adverse events. It also fights tooth and nail against any regulatory investigations or restrictions of prescribing practices, as though each individual doctor’s judgment was sufficient to assure patient safety.

    Clearly, this is not so, but patient harm can readily be denied when it’s neurological, subjective, and easily ascribed to an exotic psychiatric disorder. No one is looking over the doctor’s shoulder, and no one is surveying successes or failures in clinical practice.

    Psychiatry is a free ride on quality control.

    • Hawkeye says:

      Oh yeah. Giving an antidepressant to a patient, especially an undiagnosed bipolar(sorry Steve) may be like swititching an alcoholic from whiskey to beer.

      Re. bipolarity, I am guessing that a lot of the objection to diagnosing bipolar is the fact that it is treated agressively with atypicals—as maintainence drugs—a piece of insanity that can be worse then the disease.

      “Now Antidepressant-Induced Chronic Depression Has a Name: Tardive DysphoriaNew research on why antidepressants may worsen long-term outcomes
      Published on June 30, 2011 by Robert Whitaker in Mad in America”

  5. Peter C. Dwyer says:

    Pharnageddon delivers the coup de grace on clinical trials as presently conducted; but even before that book, a mountain of evidence showed the truly pervasive bias, distortion, dishonesty and manipulation in the design, conduct, interpretation, publication and publicity related to PhARMA’s RCT’s.

    I agree with most of Nathan’s statement:

    “This makes me angry because so many of the pharmaceutical funded trials are just so poorly conducted that their results cannot be taken as conclusively as doctors and psychiatrists have (it really does make me question the value of scientific training doctors receive and scoff a bit when that is used as a rationale for doctors’ decision-making power). For example, placebo washouts, poor and inconsistent screening of participants (not often clinical populations on all sorts of dimensions), not enough information collected about participants themselves, too many participants included to reduce amount of change in outcome measures to show significance between control and experimental groups, lack of systemic collection of adverse events, data omitted from analysis, and skewed conclusions taken as fact plague these trials. The caveat, or rather the most important part of RCTs as strong evidence research strategies is that they are conducted and reported on well. RCTS have to be quality for them to be considered quality evidence.”

    Well said, BUT:

    There is a pervasive failure to follow Nathan’s comment (and Healy’s books, and Kirsch’s work, and Breggin’s, Antonuccio’s, Cohen’s) to its inescapable conclusion: the main fault with RCT’s is not that they are sloppy or interpreted in light of our biases, or As Nathan euphemistically puts it, “cannot be taken as conclusively as doctors and psychiatrists have”. It is that they are created by PhARMA, whose primary purpose is marketing, not science. They are deliberately designed to minimize the effect of placebo and to maximize the apparent drug effect; when that doesn’t work – as it often doesn’t – PhARMA uses their ownership and control of the study design, raw data, interpretation and publication to simply distort and lie until they get the “infomercial” their marketing departments want to present as “science” to doctors and to the public.

    We need to call a spade a spade. “Interpreting RCT’s with caution” is just fine with PhARMA’s marketing departments. They are happy as long as most of psychiatry grumbles a bit about RCT’s (with a few like Dr. Balt making more direct criticisms but still not letting the other shoe drop). What needs to be said is: RCT’s are so shot through with fraud and manipulation – so much of which is hidden – that we have no way of detecting the occasional RCT that IS relatively honest. Therefore, there is every reason to conclude that RCT’s are WORSE THAN WORTHLESS.

    To “interpret them with caution” involves the assumption that the interpreters (however well trained) are smarter than PhARMA’s marketing departments, their ghost writers and their “scientists.” PhARMA makes hundreds of billions off their lies, and psychiatrists have been semi-willingly gulled into feeding drugs to millions of patients. Where would you place your bet about who’s smarter? PhARMA is like the guy running a shell game at the carnival, relying on the suckers’ (doctors’) conviction that they are smarter than the shell game guy. Surveys show doctors claim they are too sophisticated to fall for PhARMA’s promotion – but each doc believes most other doctors are taken in by it. And what kind of crazy game is this anyway, when psychiatry relies on “science” that everyone knows is like Where’s Waldo – PhARMA hiding their tricks and betting that a critical mass of doctors won’t figure out where – and if they do, won’t be willing to come out and say so?

    PhARMA pays billions to run its rigged RCT’s because – “interpreted with caution” or not – they continue to sell drugs. They wouldn’t spend the money if it weren’t worth their while.

    Again – calling a spade a spade – RCT’s (including those run by PhARMA’s surrogate NIMH) are WORSE THAN WORTHLESS. To say anything less is like saying to the guy on the subway who’s got his hand in your pocket, that he hasn’t satisfactorily explained in adequate detail why his hand is there.

    Actually, one valid conclusion does come from the RCT’s – they do prove the need to vastly expand exploration of psychosocial influences. Really – what have the RCT’s shown, except that, with their thumbs, elbows, noses and toes on the RCT scales, the best PhARMA can show is close to a draw with little old placebo?

    This is not an argument against RCT’s. They would be valuable if funded, designed, conducted and published by people with remotely unbiassed motives and with complete transparency. Healy says it all.

    • Nathan says:

      In many respects, I value that PhARMA studies are produced by a particularly biased industries with pretty clear motives. Recognizing that companies who invest billions of dollars in drug development knowing that many drugs in development will fail (even in their biased studies) and have an incentive to recoup that investment helps but those studies in contexts. Though they practice deceit, it is paradoxically pretty overt. It’s not real ethical for industry scientists to produce crappy science intentionally, but at least we all know (even them) that is what’s happening. That individual doctors don’t see this is disturbing. Doctors who do see this and then push their clinical experience as “truer” evidence also is problematic in that their own experience is biased and mostly depend on clinical practice for their income. This is very much a problem for off-label use of drugs. If a drug company is not even willing to try or can’t to get an indication for drug using all of their deceitful research practices and the promise of huge profits, then I don’t see why doctors think they can safely and responsibly prescribe off-label psychiatric medications so wantonly.

      An additional problem is the way industry funding permeates the research agenda in government and academia. We tend to trust these institutions to privilege public interest and/or scientific integrity. But when a big chunk of FDA funding comes from industry, public/private collaborations have become the norm, and universities are dependent on industry funding for grants, research facilities, and endowed chairs, industry bias that is so clearly seen in studies sent to the FDA for approval is hidden within trusted institutions that are our primary bulwarks against that bias. This is more concerning for me, because these are the only institutions outside industry that can realistically and consistently afford to do strong, clinical experiments. Individual doctors cannot put together such studies, even if they wanted to.

      This leaves us with really no trustworthy source of quality research. No wonder doctors, who do see themselves as bright and accomplished and responsible, take it upon themselves and their own clinical experience to make determinations about how to treat. Who else are they going to trust? This is all bad news for people seeking or forced into treatment, and there doesn’t seem to be an easy path to reform.

  6. Hawkeye says:

    This is all about informed consent. Nothing more. When practiced by smart people with a conscience, psychiatry is a science. Otherwise it is a cult.

    Nathan “I’m even ok with doctors having strong faith in their interventions despite lack of quality evidence as long as they make that clear and let folks using or paying for services make their own decisions of whether they want such interventions.”

    Alto: “No one is looking over the doctor’s shoulder, and no one is surveying successes or failures in clinical practice.”

    • Nathan says:

      This is about informed consent and then some. I do not believe faith of smart people in their interventions makes an intervention any more worthwhile or helpful and actually think people who without evidence project such faith and confidence are actually either not all that smart or plainly manipulative. The comment you quoted of mine is more related to consent in regards to where there is now compulsory treatment. Just because doctors are doctors does not meant they are smart or have a conscious, and even if they did, it does not mean much of the current interventions and their applications available in regards to mental heath treatment have sufficient evidence for effective use and safety. I will not someone’s enthusiasm, but that coupled with diplomas should be license to force such treatment..

    • Altostrata says:

      The lack of informed consent in psychiatry is reprehensible as well. BUT — when people champion informed consent as a way to remedy psychiatry’s excesses, I have to point out that informed consent is only as good as the knowledge behind it.

      When a doctor obtains informed consent by telling the patient fairy tales like “chemical imbalance,” “disordered brain circuits,” or “progressive brain disease,” or some fanciful statistic derived from jiggered pharma RCTs, the patient’s consent has been obtained with falsehoods.

      The problem is compounded by doctors not knowing what they do not know. So much smoke has been blown up psychiatry’s vent that doctors simply don’t know when they’re repeating propaganda. It takes a very astute clinician to sort it all out.

      Because of decades of corrupt research and leadership, few have a grasp on the risk-benefit picture for psychiatric drugs, and isn’t risk-benefit assessment the purpose behind informed consent?

  7. Peter C. Dwyer says:

    Altostrata,

    Thanks for getting this right, and so concisely. PhARMA, psychiatry and medical model practice have so many points where, if you equivocate, they win.

    DSM is a hash – if you accept it, virtually nothing you say can overcome medical model bias and DSM’s reification of its own concepts – just accepting the term “disorder” is on the slippery slope to agreeing that there’s something wrong with the brain that needs a mechanical fix. If you accept the RCT’s and try to argue piecemeal about the “problems” with RCT’s, it’s kind of like arguing about the imperfect verification that unicorns exist – you’re still talking on psychiatry’s turf about something that doesn’t even deserve to be in the picture. You are so right on the same score about “informed consent” – people toss those words off as if that solves the problem, when it’s really no help unless the information is accurate and patients can hear it through the din of PhARMA’s $60 billion promotion budget and psychiatrists’ palpable belief in drugs. Same thing with saying psych drugs are “overprescribed” – any psychiatrist can agree to this and continue prescribing as usual, since they are free to interpret for themselves what “overprescribe” means. Ditto with FDA approval of drugs being cited as proof that they are “safe and effective,” with FDA advisory panels stacked with conflicts of interest, with guidelines and algorithm’s based on the same skewed RCT’s and selectively published studies. On and on.

    Unless you’re willing to follow the facts to their logical conclusions – like Whitaker, Kirsch, Healy, Grace Jackson, Mosher, Breggin and a few others do – PhARMA and psychiatry will continue unfazed. I hate saying this because I admire the intelligence and courage of people like Dr. Balt, Dr. Steingart and others who swim against the current, take professional risks and do good work. Their willingness to raise hard questions is enormous support for those outside psychiatry who advocate for change. But I can’t shake the impression that they have to, every so often, hedge their words to stay out of PhARMA’s and psychiatry’s cross hairs. Breggin, Mosher, Jackson Healy are good object lessons to others in the profession that if you step too far over the line, you lose appointments and risk your license. The psychiatric establishment, having exacted this much equivocation, can carry on as usual.

    • Altostrata says:

      On the positive side, those who speak out against the status quo tend not to be popular, but often presage a move toward a tipping point in a paradigm.

  8. Hawkeye says:

    Ok folks, points well taken. Informed consent may be very different for me than for others. Because of my position I have acess to all psych journals online. My informed consent comes directly from research papers, example “The Case for Caution.” By Ghaemi/Goodwin on anti deprssants. My “Goodwin/Jamison” is well annotated.

    Jim Phelps website and books are a great source of information.
    Informed consent has little to do with a treating psychaitrist.

    As an aside, how many psychiatrists, when suggesting an atypical, tell the patient, “Ok, we are going to do a blood sugar test every three months and I want you to keep a chart of your weight.”

    • Altostrata says:

      Doing your own research is an excellent idea, but it is not what’s meant by “informed consent,” which is a doctor’s responsibility to discuss options and risk-benefit thoroughly with a patient.

      (I have great respect for Jim Phelps but you’ll see bloopers such as “the biologic basis of mood disorders” here and there on his site, legacy of when myths roamed psychiatry.)

      • Hawkeye says:

        Right on Alto. Is informed consent even possible with the 15 minute med check? Is it possible when shrinks get their info from drug reps? This seems to be true across all branches of medicine. I had a blood pressure problem and refused to take meds, it was much imporved when I finally got around to exercising. I think a lot of cardiac interventions are statistically useless.

        Anti depressants can be the worst psychiatric disease a patient may ever have to deal with, and years ago there was no internet so a lot of good people lost the foundation of their lives or their lives themselves.

        Google Del Shannon, “Runaway.” I have a strong sense of identification with him whenever I listen. He was a supercompetent guy who got agitated depressed and then when people tried to put out his fire with rocket fuel he shot himself.

      • stevebMD says:

        “Is informed consent even possible with the 15 minute med check?”

        Great question. The answer is no.

  9. Hawkeye says:

    But real informed consent with the patient an agressive inquistor and particpant will imporve outcomes and reduce costs. What’s the solution? Is there a solution?

    How about very informed physician led focus groups, say a couple of hours a month of pure education— with you as leader Steve.

    Topic: All about affective disorders, 100 listeners. There are handouts, in plain English. The listeners exchange phone numbers and email addresses and meet outside of class.

    A University of physician mentored self empowerment.

  10. Steve,

    Each of your readers ought to spend a couple of hours on this site –

    http://www.madinamerica.com

    And then come back to your site, with some perspective on what was allowed to take place in your field.

    Then we can all have an intelligent conversation about “anecdotal evidence”.

    Duane

    P.S.: IMO (growing number of others), psychiatry is dead.
    Maybe that ought to be the title of your next post, Steve.

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  12. Kris Berg says:

    My experience is a bit different but somewhat hellish, I took ssris on and off as a teenager, at one time being forced to take it by my parents who would disturb my sleep and force me to take it.
    They use to sneak it into my food, and one time chastised me for staying up late a couple of nights, of course it could have been because although I didn’t drink coffee, a couple cups of tea I made combined with slow metabolism of luvox could have caused it.

    My erections have not been the same since I hit puberty pre-teen, I am still a virgin, whereas at puberty, I would be somewhat afraid to have an erection, it wasn’t out of guilt, it was because after masturbating on the bed and fantasizing a bit, erections would feel like a roller coaster, it was intense, the penis would suddenly jerk and harden and you couldn’t stop it. It was an awesome feeling.

    I was hospitalized a couple times briefly, in between the ssris, I took rispderal, one time with the ssris and zyprexa, briefly.

    I always had some attraction to girls, but was anxious, however during the cold-turkey on/off withdrawal since ssris made me hyper and sibilings didn’t like it, I while not in romantic relationships did develop somewhat of a rebound sexual attraction. I of course then began to masturbate daily, ssris may have made it more difficult, but was still able to do so.

    Eventually after turning legal adult no psych meds were taken, except for perhaps a brief bout of wellbutrin and gabapentin which I will get to later. I should mention prior and during the first SSRI,luvox, I did try sam-e and st john’s worth pressured by parents.

    I have always resented my erections, I can’t find the problem, it takes a couple minutes of stimulation to get an erection usually, so I can’t watch porn for an hour, sometimes I delay the climax, however I need to use a bit of force to get an erection sometimes, and unlike my pre-teens I have mini “pulses” of erections that is after the few pulses or erections that result in ejaculation, I can have mini erections or pulses for a minute or two, however I have to stimulate the penis after the first few.

    I resent the long refractory period (though it may not be a bad thing I’ll explain), I thought refractory periods were normal, however for a guy in his teens or 20s, they are only supposed to be a few minutes not half a day. Even if I can get an erection a few hours later, its more a struggle and not as good as the first one usually.

    Here of course is the problem, I HAVE to masturbate when I get up in the morning, and sometimes before I leave the house and hang out in public, not always but most of the time, otherwise I get distracted, if I am in the car and bumps along the road while make my penis super-sensitive. I feel tiny pulses in my penis, usually I need a semi-full bladder to get an erection, and a full bladder will often lead to arousal and erection although difficulty urinating afterwards a bit, not as bad as pre-teen, urinating before it while kill the desire and arousal but not always and not always a full bladder will lead to an erection.

    Although usually masturbation can follow after a few minutes of porn or whatever, its not always the case, I try to err on the side of masturbation, and my friends/parents whatever wonder why I take so long to get ready. If it takes 20 minutes or 30 minutes of finding the right stimilu, I will wait, so I can be changing clothes and be “Ready” and folks wonder what is going on.

    So it’s a problem, either from the refractory period or difficulty in getting an erection. Long breaks from masturbation such as a few days may help a little bit in erection quality, but after a weeklong break did not really improve things.

    Little things such as a girl’s laughter from whatever or comment about someone’s butt or whatever can get my aroused, I don’t get an erection but I feel a rush, and if I try to masturbate in my head or with other similu, it helps but not always. I can masturbate to non-porn, cute scenes that occur aka butt slapping videos but even interviews with beautiful women, not always does it have to be cleavage, a beautiful face with long hair can prompt it.

    So am I hypersexual, you would think so but erection quality is gone, pulses are annoying, and refractory period is high, and I have never been in any sort of relationship due to anxiety and not exposed to the right environment (conservative christian home though not too extreme).

    I have read about Restless leg syndrome and its connection to persistent genital arousal and restless genital syndrome. I sometimes have RLS and masturbation can help it. However, it does not always help, in addition, if there is difficulty getting an erection or the erection is weak subsequent erections an hr or two later may be required. Once that refractory period sets in the fullest I am no longer distracted and can concentrate on things, I was diagnosised OCD,ADD,ASPERGERS,ANXIETY.

    I have insomnia, have used gabapentin and bendadryl, the latter makes RLS worse but it helps me sometimes achieve masturbation more easier to relax (Acetyl anyone) and go to sleep. Sometimes the need for a second of third masturbation in the next few hours before leaving the house or watching a movie or whatever is difficult (in other words not all the time the beloved refractory period is there I am calm). So my family/friends think I have a hard time getting out of bed, when I’m trying to masturbate again or when I wake up.

    I don’t know what to do, in my pre-teens I was attracted to girls, had better erections, but didn’t need to masturbate frequently, combined with arousal to different things, nervousness, anxiety, “need to masturbate to relieve”, a blessing and a curse of the refractory period, when the first masturbation does not relieve symptoms, on top of that never been in a relationship, and am mocked by parents and am fat.

    I’ve lose interest in everything except porn and other non-porn stimuli and food for the most part, I don’t like to exercise at all although a brief walk is sometimes ok. I do enjoy some company and chit chat. I am lucky to not have to work long hours. Insomnia persists.

    Any thoughts and help, it seems tapering off the ssris early and further antagonizing dopamine made things horrible for me, I am now 30 years old, nearly 20 years since hitting pubety, and hate life, it could be worse. I have become too mellow, because my parents have a bit of ADD add and few things as a power struggle and have a temper problem making me unhappy. They will argue about saving a few dollars here and there in there 50s but have no problem not planning ahead to save $100 and having little problem losing thousands of dollars here and there over the long haul or forgetting to pay the bills for months at a time and forgetting things here and there.

    One girl a few years ago suggested if I don’t want to get married, can she have a kid with me, I said no marriage civil, but in my heart though she might be open, she comes over often as my sister’s friend, and I get jealous if the topic of dating and marriage comes up to suggest she might be interested in other men. Now of course even though I changed my mine a bit maybe not full blown marriage, she is becoming more evangelical and my relationship with my sister is not the best, so maybe she is trying to steer here away from me. Ok, move on, but I am not independent yet fully, so I don’t know what to do. Being aspergers,ocd we like to get particular and even her laugh arouses me and she is pretty, so its an opportunity. I am anxious go an SSRIS like a therapist/psych says, hell no, wellbutrin no good either, have no tried pde5s and tongkat ali,pycogenl,arginine no help.

    Any suggestions please.

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