Hello! On my way to being cured with low dose reinstatement.

New members can only post here until they introduce themselves
Low dose cure
Posts: 2
Joined: Wed Dec 21, 2022 3:45 pm
Contact:

Hello! On my way to being cured with low dose reinstatement.

Unread post by Low dose cure »

Hello everyone! I joined this forum solely so that I could share my treatment regimen of low dose reinstatement. I'm currently restricted from replying in other threads and I guess it's because I haven't written an introductory post yet. If I'm mistaken, I'll reach out to the moderators to get those restrictions lifted.

I wrote an extensive post on Reddit detailing my background, symptoms, and treatment, which I'll share at the end of this post. The abbreviated version comes first below.

I was on 5 mg escitalopram through the year 2021, quitting it in December of that year. For the entirety of 2022, I suffered from PSSD, including genital numbness, loss of libido, anhedonia, brain fog, and emotional blunting. Having spent a year getting no better (and maybe a little worse), I considered reinstatement based on the fact that my sexual function was in some ways better while on the escitalopram. I also found this thread to briefly confirm that others had attempted reinstatement with mixed success. I asked for help from two psychiatrists and they gave me the typical responses: "I've never heard of this lasting this long," "Do you have any outside stressors?" "I advise against your treatment plan." Already frustrated, I ignored their advice and began low doses of escitalopram, using pills that I had left over from when I quit.

Despite being prescribed 5 mg of escitalopram, I found strongly positive results from 0.9 mg (active ingredient) weekly doses. Brain fog, numbness in my extremities, and genital numbness all cleared up over the course of a few days before reverting to a state that was not great but still better than PSSD. The only symptom I struggled with and am still working on is erections. Even erections improved about 72 to 120 hours after dosing, but they're still nowhere near my pre-SSRI state.

I wanted to switch to a daily dose so I wouldn't shock my system and so reduced to 0.06 mg. Even this worsened my erectile dysfunction and so I've lowered my dose to near-homeopathic levels of 0.01 mg daily, which I began about a week ago. Oddly, this still negatively affects my erections while it does nothing to alleviate other symptoms. (I actually think my condition has been a little worse lately, as I'm feeling irritable, listless, and not as sharp as I was on the 0.9 mg doses. I don't know if that's due to the escitalopram or simply withdrawal symptoms from it.)

This is still very much a work in progress but there is much optimism here. If you are already familiar with reinstatement and Pete's thread, the main thing I want readers to know is that they should cautiously taper on to the medication. If I'd taken half-doses (2.5 mg), that would have been far above the ideal dose I discovered for myself. I acknowledge that there are numerous reports of people having tried reinstatement to no effect, but I can't help but speculate that they used doses that were too high.

* * *

History

Glancing over this forum, I noticed that at least one person has said that people vulnerable to PSSD tend to be male and have high sex drives. That pretty well describes me. I'm 36 years old and am in otherwise good health. The only minor notable issue to mention is that I was diagnosed with ADHD and take a mere 5 mg of Ritalin (methylphenidate) daily to treat it. I don't perceive that's relevant.

I've been depressed much of my life with some situational depression piled on top of it. I had a rough five years or so. Near the end of 2020, I was prescribed 5 milligrams of generic Lexapro (escitalopram) to be taken daily. I didn't take it very consistently, but for the sake of simplicity, I would say I was on it for about a year, dropping it in December of 2021 because I didn't perceive it was helping with the depression and it also made erections difficult. Pre-SSRI, my erections were often spontaneous whereas in my PSSD state, I found that my sex drive was at best "responsive", only perking up to outside stimulus. Interestingly, I noted that while I was on it, orgasms had a certain "sharpness" to them, which is a major reason I turned to this treatment option. Because I missed a lot of doses, I have a large stockpile of leftover pills.

2022 was a bad year for me, biochemically speaking. After dropping the Lexapro, things never returned to normal. Erections remained difficult and orgasms were heavily "muted". Prior to the Lexapro, I had a rather strong sexual appetite, masturbating three or four times per day. That dropped to once or twice per day post-SSRI, with little enjoyment. In addition to the obvious sexual dysfunction, I had more vague symptoms as well. I had no energy to do anything. My thoughts felt clouded and my emotions were blunted. Things felt really wrong in a way that was hard to describe. I gave myself a year to recover and only reached about 80 percent of normal and although I tried to reassure myself that 80 percent is pretty close to where I was before, I knew that things weren't right and I wasn't on any sort of trajectory in which they'd ever return to normal on their own. I also learned after reinstating that my extremities had been numb.

I expressed some of these frustrations-- especially the sexual ones-- to my prescribing psychiatrist around June of 2022 and he responded with the skepticism that I'm guessing many members here are familiar with. "I've never heard of sexual dysfunction lasting this long. Wait and see." He also described my dosage as "sub-therapeutic". When I confided last month to my therapist that I was considering a low dose SSRI treatment, he suggested that the dysfunction I was experiencing might be a result of external, non-pharmacological stress factors. As I said, I had a rough five years and even in the midst of a major automobile accident, a breakup, a parental death, and losing my job, my libido was never diminished like I was experiencing. My therapist recommended a new psychiatrist and since my prescribing psychiatrist is gatekeeper to an important methylphenidate prescription and I didn't want to lose him for disregarding his advice, I decided to try this new psychiatrist. I called him up to get advice on my low dose treatment plan and got the now predictable responses: "I only had one patient with lingering sexual dysfunction and it only lasted a few months." "Have you tried or considered a prescription for Cialis?" "We can make an appointment for you. I'd like to know if there are any outside stressors that could be causing your symptoms." "I do not recommend your treatment plan. That makes no sense." Based on that call, I decided to continue with my plan on my own.

A Gentle Warning to Readers

Before I continue, I want to politely guide readers in a positive direction. You can skip this section if you'd like, but I think it's important to take a sensible approach to treatment. This section will probably not win me any friends here, but I also don't want my perspective to be misinterpreted.

My background is in science and I consider myself a pretty good scientist overall. I see a lot of pseudoscience permeating PSSD forums and I recognize and acknowledge the frustration and confusion that drives it. Many people here must be profoundly hurt, having not only lost a significant part of who they were due to overeagerness to prescribe antidepressants in the first place, but then on top of that to be met with skepticism and what amounts to doubt that the problem even exists. The very few articles on PSSD that pop up under a Google Scholar search seem to emphasize that it is poorly understood and mostly call for the "wait and see" approach that obviously doesn't always work.

This experience for me has thrust in my face what I'd call "the dark side of science". Scientists have arrived at their consensus (that SSRIs are mostly safe and effective and PSSD is at best a marginal issue or at worst does not even exist) and now swaying them to a different perspective is an exercise in futility. The trust that I once had has been seriously breached and now I imagine a day decades from now in which the doctor sitting across from me recommends, say, certain chemotherapy treatments to halt the progress of cancer and then I will have to evaluate as a non-expert whether the advice they're giving me is sound or if it's just dogmatic adherence to the scientific consensus.

But having written all that, I do not endorse the "alternative" remedies that bubble up here. Homeopathic medicine, essential oils, St. John's wort ginkgo biloba, altering the gut microbiota, etc.-- a lot of these are complete quackery and if you're lucky, the only thing they'll negatively impact is your wallet. Don't let me stop you from trying them if you're determined to do so, but use your critical thinking skills to reason whether those treatments might be effective. The treatments I've briefly listed have been offered as a panacea for just about every malady and it seems unlikely that they truly provide what they promise. Don't let your despair lead you down the path of latching onto snake oil.

I also denounce any conspiratorial thinking. Yes, I've been badly burned by the doctors and experts around me. Antidepressants were mentioned to me in a casual and optimistic way by my therapist. They were easily prescribed by my psychiatrist, in stark contrast to the methylphenidate prescription I had to fight to get, despite that medication having no major side effects at this level. I was never adequately warned about PSSD prior to taking Lexapro and any mention of my symptoms to experts was met with skepticism that my experience was valid.

In spite of all this, I don't believe that the medical industry is a scam or that there is any malice behind any of this. I recognize the skepticism I encountered as the kind of baseline skepticism that often drives good science. It's (generally speaking) good for the field but at times, such as in my case, bad for the individual. Doctors are overworked and because the quality of life issues arising from PSSD tend to be difficult to measure, there simply isn't much incentive to study it or take it seriously so it gets marginalized as either unimportant or some psychosomatic problem. I'm deeply upset with the doctors and experts around me and I wish they'd done a lot of things differently but that does not extend to turning my back on their entire field. Sometimes good people make mistakes and frankly, as negative as my experience was, PSSD ranks rather low among the egregious missteps in medicine. (C.f.: The Tuskegee experiment, lobotomies, insulin shock therapy, etc.)

My hope, ultimately, is to bridge the gap between patients such as readers here and their doctors. I think there should be space to tell a patient who wants to try a homeopathic remedy that, no, it will not work and they are wasting their time, but my low dose SSRI treatment should not have been met with such skepticism when the consensus is, "What you are experiencing may not exist and if it does, we have basically no idea how to treat it so we make no recommendations." Take all that for what you will.

My Treatment Regimen

In brief summary, having suffered from PSSD for a year with unsatisfactory progress and in the face of skepticism from the experts around me, I gravitated toward returning to a low dose of Lexapro as a possible treatment. This reasoning was largely based on having better sexual function on the SSRI than off. I sought out this forum and saw that I was not the only person to have tried this. Results from others here have been mixed, ranging from great improvement to no effect to worsening condition. The idea of taking more of the stuff that put me in the state I was in was frightening and was the main reason I didn't try this six months ago or earlier. I understand anyone's trepidation as they consider this for themselves.

I bought myself a lab scale precise to one-tenth of a milligram. The scale was pre-owned and cost about $60. If you want to save money, I imagine you can go to your local community college and ask the chemistry department to use their scale. You might also try your local pharmacy. Ask around. Regardless, I'd suggest using a scale that is precise to at least one-thousandth of a gram. Someone also recommended using a compounding pharmacy, which is a specialized pharmacy for doing exactly what I'm referring to here, adjusting medication by changing the dosage amount, although I understand that using a compounding pharmacy requires referral from a physician.

I took five pills and weighed them individually. Their average mass was roughly 65 milligrams, meaning only about one-thirteenth of their mass was the active ingredient. I'll try to be clear about whether I refer to the mass of the pill or the mass of escitalopram hereafter. I took these five pills and folded them in parchment paper, then crushed them with a hammer so the powder could be divided arbitrarily.

My plan was to start with a small dose and multiply its amount by 1.5 each week until I obtained the desired results. Escitalopram supposedly has a half-life of 30 hours in the body, so a week would be plenty of time to return to the baseline. Once I found the "butter zone", I would then drastically reduce the dose and switch to daily or every other day to try to maintain whatever levels were best, then slowly wean off the medication if I could. I still offer this plan as a guiding recommendation, but as you'll see, I obtained great results far sooner than I expected and am now evaluating how to proceed.

On December 6th, I measured out 8.0 mg of powder, corresponding to about 0.6 mg of escitalopram, a minuscule dose. This helped put my mind at ease regarding the possibility that my PSSD might only worsen with this treatment; I could monitor the effects and stop abruptly if I perceived I were only making things worse. 8.0 mg is also "numerologically convenient" and I planned out dosages for future weeks: 12.0 mg, 18.0 mg, 27.0 mg, 40.0 mg, and if necessary, 60.0 mg of powder, corresponding to nearly one whole pill, each dosage close to 1.5 times the previous.

This first 8.0 mg dose produced vaguely positive effects. None of the PSSD or other problems were worsened and I perceived that they improved somewhat. Most notably, I felt what I would describe as a sensation like plunging in ice water. Put another way, it felt a little like having rested on an arm or leg for too long only to realize that it's asleep and to feel sensation return to it. This feeling was most pronounced in my extremities but I also regained some sensitivity in my genitals. Best of all, I felt it "in my mind", which was especially promising. Erections improved somewhat as well. There were no notable downsides.

Having done well at this low dosage, I took my following dose of 12.0 mg of pill (~1 mg escitalopram) a little early, on December 11th. Results were overwhelmingly positive. The "ice water feeling" was more pronounced and I found sensitivity returning to my arms and legs that I hadn't realized I'd lost. (This was the "mystery symptom" I referred to earlier.) Erections were difficult the first day or two after the dose, but I don't perceive they were any worse than under PSSD. My improvement peaked around three days after the dose, with erections being more spontaneous, orgasms regaining their welcome SSRI "sharpness", libido returning, and my mental acuity returning to pre-SSRI levels. I want to emphasize to anyone reading this: I did not realize just how much I'd lost and so this treatment exceeded my expectations. If you decide to follow my path, I hope you make the same discovery.

One very minor downside to the 12.0 mg dose was that I became very irritable around mid-week. This is a known symptom of SSRI withdrawal. I don't see this as a strict drawback, however, as it also indicated that I was emerging from the emotional blunting I'd suffered from this past year. I'm not happy to feel agitated, but I'm happy to feel something. I also found that the positive effects seemed to taper off late in the week, about five to seven days after the dose. The genital anesthesia, brain fog, and other symptoms began to seep back in, although they didn't return to their previous low points.

Because I hadn't returned to my baseline levels after one week, I decided two days ago, December 19th, that I would take only an 8.0 mg dose as a "booster" (~0.6 mg escitalopram). This seems to have been appropriate, echoing the previous week's experience with the 12.0 mg dose. Erections were difficult for the following day (again, not significantly worse than under PSSD) and as of today, my libido is back to sky-high levels.

Again, as a summary to anyone who might follow my path, I recommend an extremely cautious dose as you get your bearings. My 0.6 mg of escitalopram dose proved to be a good level and I'm not sure it will be necessary to return to the 1 mg dosage. Multiply the dosage by 1.5 each week and be patient, taking note of your reaction.

Looking Forward and Recommendations

This is still very much a work in progress but my findings are so overwhelmingly positive that I feel comfortable sharing them now. I also would emphasize that these changes are crystal clear-- this is not a placebo or psychosomatic effect.

The fact that my symptoms did not return to their "PSSD baseline" levels even after a week gives me hope that I won't need to switch to daily doses and make a concerted effort to wean myself off of SSRIs once and for all; I may be in that process already. I will continue to monitor my symptoms for the coming weeks and months, now with a much better idea of what to do.

My one disappointment is that my erections seem to have not fully returned. They have noticeably improved under this treatment regimen and soon or long after a dose are no worse than they were under PSSD, but they seem to be a little less spontaneous and powerful than they were pre-SSRIs. This may improve over time and even if it doesn't, I think my performance is nearly "good enough" and I'm hesitant but open to the idea of adding erectile dysfunction medication if it is occasionally necessary.

All in all, whereas I felt I was at 80 percent functionality under PSSD, I'm now back up to 95 percent with erections being the only thing that might need work. I'd also like to get my condition stable, either by small, regular doses or ideally weaning myself off of escitalopram entirely.

My recommendation (as a non-doctor) to readers here is simple: Try the low dose SSRI treatment. If you have any leftover pills, great, but if not, I think we know how easy it is to get a prescription for antidepressants these days. I won't go so far as to encourage anyone to commit fraud, but suffice it to say it probably won't be worthwhile to tell your prescribing physician that you're trying to treat your PSSD. I suggest using whatever SSRI led to the PSSD in the first place before switching medications. Get access to a lab scale precise to one-tenth of a milligram and start with a very conservative dose. In my case, that was about 0.6 mg of escitalopram (~one-eighth of the already "low" dose of 5 mg), but perhaps an appropriate dose will depend on your own medication. If you don't see improvement under your own medication, I can only offer my sympathy. Increase the dosage by 1.5x each week until you see the results you want. Don't exceed the prescribed dose. Stop and change treatments before then. If your results are anything like mine, you'll return to normal at a much lower dose.

My recommendations to the pharmaceutical industry are far more extensive:
  • Antidepressants are overprescribed. I acknowledge some people respond well to them and they have even saved lives, but they should only be prescribed with great caution as a last resort. Those who are not suicidal may not need SSRIs at all.
  • Antidepressants should be prescribed more conservatively than other medications whose access is more restricted, such as low dose amphetamines for ADHD.
  • Patients should be clearly informed of sexual side effects they might experience while on SSRIs and it should be acknowledged that dysfunction can persist for months or indeterminately longer after ceasing SSRI intake. They should also be told of "brain fog" and numbness they might experience.
  • Patients should wean off of SSRIs carefully from any dosage, switching to half-pills and/or dosing every other day or more infrequently. PSSD seems to have something to do with abrupt cessation of SSRIs.
  • PSSD appears to be a symptom of SSRI withdrawal, not a separate condition (or at least not entirely).
  • Patients seem to respond to vastly different dosage levels. I see the maximum recommended dose is 20 mg per day. I experienced PSSD and other negative effects at the lowest dose of just 5 mg, which I was told is sub-therapeutic, and am responding positively to doses of 1 mg per week or less. These other dosages should be offered and higher dosages should be worked up to slowly with time.
  • PSSD is a real disorder and dismissing or downplaying it due to its rarity is unhelpful to patients.
  • Suggesting that PSSD may instead be psychosomatic can be seen as insulting. Likewise, suggesting erectile dysfunction medication while ignoring other symptoms can be off-putting, especially considering the patient's recent negative experience with overprescribed medication.
  • PSSD can be treated with very low dose reinstatement of SSRIs. (My hope is that this is true for everyone, but at the very least it was true for me and should be a viable option.)
  • Failure to listen to patient's needs and suggestions can drive them to ineffective or dangerous alternative medicines. Care should be taken to differentiate between an unorthodox treatment with a plausible mechanism that is outside the scientific consensus (e.g., low dose SSRI reinstatement) versus quackery that is completely without merit (e.g., homeopathic remedies). The former should be seen as acceptable or even encouraged while the latter should be gently discouraged.
  • On the whole, forums such as this one are a poor and even dangerous substitute for expert medical advice. Be open-minded to plausible treatments to maintain trust between patients and the medical industry. Any unpleasant experience can drive patients to treatments that are known to be unscientific and predatory. This distrust may extend beyond the issue at hand into other medical decisions.
On these last two points, I'm hoping to get my story written up as a case study of some kind. It would be only a tiny step in the right direction and it's an uphill battle to get anyone to listen to me, but it is the appropriate way to get PSSD and other problems taken seriously.

Thanks for reading! I really hope that everyone who follows in my footsteps is fully cured of their PSSD. Be sure to take notes on your experience and share them.

I'm probably going to keep a low profile here as I seem to be mostly cured of my PSSD. If anyone has any basic questions, I'll try to answer them, but I'm going to avoid getting into any extensive back-and-forth discussions. I've tried to lay out my experience and findings in as much detail as reasonably possible so I think my advice stands as "take it or leave it".
omar90
Posts: 138
Joined: Tue Jan 17, 2017 2:10 pm
Contact:

Re: Hello! On my way to being cured with low dose reinstatement.

Unread post by omar90 »

Thanks for sharing this, all very interesting and good to hear a success story with low dose SSRI treatment
Fluoxetine 2008-13, PSSD thereafter

Condition worsened after 4 weeks on Setraline in 2014
GIXXER
Posts: 658
Joined: Mon Apr 25, 2016 4:29 pm
Contact:

Re: Hello! On my way to being cured with low dose reinstatement.

Unread post by GIXXER »

I tried low dose and it only made me worse
GIXXER
Posts: 658
Joined: Mon Apr 25, 2016 4:29 pm
Contact:

Re: Hello! On my way to being cured with low dose reinstatement.

Unread post by GIXXER »

Also wouldn't this confirm that PSSD is actually depression, or underlying depression?
HzeTmy
Posts: 92
Joined: Tue May 17, 2022 1:31 pm
Contact:

Re: Hello! On my way to being cured with low dose reinstatement.

Unread post by HzeTmy »

Wait you had 80% functionality and decided to reinstate ? 🤔
Low dose cure
Posts: 2
Joined: Wed Dec 21, 2022 3:45 pm
Contact:

Re: Hello! On my way to being cured with low dose reinstatement.

Unread post by Low dose cure »

GIXXER wrote: Fri Feb 03, 2023 4:00 pm I tried low dose and it only made me worse
Interesting. Can you give me more details? What medication, what was your prescribed dose, and at what dose did you reinstate?
GIXXER wrote: Fri Feb 03, 2023 4:06 pm Also wouldn't this confirm that PSSD is actually depression, or underlying depression?
I've been depressed much of my life and never experienced any symptoms like PSSD. Being 37 years old and nearly impotent is not normal, just to name one.
HzeTmy wrote: Sat Feb 04, 2023 12:51 am Wait you had 80% functionality and decided to reinstate ? 🤔
Yeah, I should have edited that out because it caused a lot of confusion on the Reddit thread. I threw out that number haphazardly and it really doesn't capture the full picture. I'd say 0% is literally comatose and so the fact that I could go through basic routines, could derive some enjoyment out of sex, and still had a lot of the knowledge I had prior to SSRIs but it was just "locked away" led me to understand that I had a not-especially-severe case of PSSD, but the symptoms were there and weren't going away. I also find that the effects are nonlinear and hard to quantify: if you have 80% the intelligence and 80% the pleasure and 80% the sensitivity to touch, can you really be said to be living 80% your maximum quality of life? Or is it then more like 50%?

I'll try to remember to delete the 80% comment if I repost this so it doesn't muddle my story.
Post Reply

Who is online

Users browsing this forum: No registered users and 3 guests