cinephile: I've had it!

[cinephile]

Ugh! I'm so SICK of this! This is the last straw. Today I discovered my debit card had been hacked! Sure, "only" for about $250, but that's not exactly chump change when you're severely underemployed and struggling to make ends meet, in ADDITION to putting up with all the BS we have to endure with psych meds.

 

And what about those psych meds? YES, I'm currently tapering Lexapro and will be off it this time next year, but I'm just so sick of being strong all the time. It's just so wearing. I often have heavy brain fog and the worst part of it for me is the anhedonia and numbed sexual response. It honestly feels like my genitals are rubber and barely exist at all. I sometimes feel a little arousal if I abstain from sexual activity for a few weeks, but even then the arousal is largely muted by that "SSRI blanket" of numbness that we all know and love. In fact, when it's at its worst, most of my body feels like rubber. This is especially true when I take a shower and I can barely feel the water. Just awful and I'm sick of this sh*t. It's been like this, off and on, since '06 and I'm terrified that getting off the Lexapro won't even help. And did I mention that I'm reminded of this numbness when I hear my neighbors passionately making love? It's already brutally difficult for a 20-something male to have to suffer with these sexual issues, but another entirely to have it rubbed in my face when I hear my neighbors.

 

What I hate the most is -- I'll start to FEEL something, ANYTHING, like joy or excitement or arousal or whatever, but then the SSRI blanket just clips off the feeling and it doesn't ascend to the heights I'm used to. It just dies off and I'm numb again. This has even had an impact on my hunger/appetite. In fact, I can't remember the last time I was genuinely, truly HUNGRY for a good meal. I just eat to take on fuel and of course this drastically reduces the pleasure of food. But I still continue to eat junk food like a junkie who chases that first high, hoping to feel that high again.

 

This numbing has made my job 100x more difficult than it needs to be. It's utterly exhausting to have to pretend to care about my work and worry all the time if my coworkers think I'm just showing up and don't give a damn about my work. The worst part is I've finally found a career that fits me well and I KNOW that I would be much more excited and motivated if I didn't have the blanket wrapped around my brain. But how the hell do I convey that to my coworkers? Of course I won't -- how could they understand? I risk alienating them even further if I tell them. I just wish I could tell them I can't find the motivation right now, and that hopefully it's a temporary thing. But for right now, I JUST CAN'T be as enthusiastic and motivated as I normally would be.

 

That's a terrible thing too -- it's just not socially accepted/understood what we go through. So we have alienation on top of everything else. Sometimes I wish I had cancer or some "disease of the week" so I could at least get some sympathy and understanding from my coworkers. But NO, I suffer in silence.

 

But for me, the worst part is the uncertainty. Constantly I ask myself,

 

-"Will I be able to get off the Lexapro?"

-"Will I have terrible withdrawal as I approach the finish line? And what then? Do I just stop everything and put my life on hold until I recover? I don't really have that luxury but jesus christ enough is enough with these meds -- I've been on them for half my life and I didn't even remotely need them in the first place!"

-"How soon will I recover my humanity and these terrible symptoms subside?"

-"HOW MUCH will I recover?"

-"Will I be able to find a job in a new career in which I only have a year of experience in the worst job market since the great depression? And if I don't, I may very well lose my apartment and have to move in with my mom, who has a one bedroom apartment. Either that or move halfway across the country (AGAIN) and live with my dad, who ALSO only has a one bedroom apartment."

-"Will psychiatry EVER conduct unbiased longitudinal studies on what these drugs do to patients' brains long-term so they can start to look for a cure for symptoms such as mine?"

 

And in addition to all this the "check engine" light went on in my new (used) car.

 

And the crazy thing is even if I received some much-needed good news, the SSRI blanket wouldn't allow me to enjoy it, or at least nowhere near the level of enjoyment I used to feel. It almost makes me a nihilist. Almost.

 

I swear there are days where I just don't care anymore. I'm not suicidal (THAT would mean I could actually FEEL DEEPLY about something, even if it is pain), but I'm numbed to the point where sometimes death wouldn't be such a big deal. I'm sure you all know what I'm talking about, and how that admission is NOT a suicidal cry for help, but merely just a statement of the insane status quo of long-term SSRI use.

 

Sigh.

[Neuroplastic]

Cine, so sorry to hear about it. We all know how rough rough rough it sometimes gets. It takes lots of time to heal, and so often we're all on the verge of having it dearly enough. But every single time it happens we take a deep breath, stand up and continue this grueling, but *still* having its purpose, voyage. We will all heal eventually.

 

If you feel up to it, please remember us your story (the "original condition", side effects/symptoms over the years, poop-outs, if any, etc.) - the more we know, the better we will be able to help you. Then, every time you have improvement or a bump, you will update this thread. Hang in there! You will make it.

[angie007]

Hi Cinephile,

 

Oh heck, im so sorry buddy about your credit card, how cruel on top of wd and everything else,

i really feel for you, and totally understand your need to vent.

 

As to the rest of it, how i can associate with all of that, although im not bothered too much by the sexual issues at the moment,

but i can only imagine how it would depress a young guy.

 

But i do understand the anhedonia part of wd, hell it would be lovely to feel other things apart from sadness, isnt it odd

how its always the negative stuff that we feel, and never the good things in life, like joy, happyness, and love, i have no problem with crying, but rarely find anything to laugh about, how sad is that!!!!

i really hate this part of wd, its awful, i would love to be able to live my life as a " normal " person, instead of this

lonely, boring, depressed individual that i have become, because i can change NOTHING about the situation i find myself in, thats down to paxil and GSK - The Global Serial KIllers!!!!!!!!!!

I try so hard to be optimistic and hopeful, but some days its hard, especially when our emotions change so erratically, that we cannot predict from one hour to the next exactly how we are going to feel. I hate the fact that we cannot plan anything for that very reason,

so hard on our families to understand too - even i find it hard to believe some days, just how unpreictable this whole syndrome is, as its not like a normal illness, where there is steady progression, its sometimes like 1 step forward and 3 back.

 

But as im only 17days out from the paxil poison, i guess i have to learn to accept, and not get so frustrated with myself, that im unable to live the life i want to live for now ONLY!!!!

Do you struggle with motivation too??? Ive never felt so unmotivated in my life before - its awful. Im really hoping and praying that at some stage, everything will click back into place, and we are able to feel better, and feel all

emotions and join the normal human race again.

 

i dont know if you feel the same, but one trhing i have learnt is this;-

 

I will never ever again take the " normal" simple things in life for granted again ever,

just to get up, and feel well and be able to plan our days, sounds like heaven to me right now.

 

Im right there with you buddy, you are so not alone promise.

[Altostrata]

cine, you know you will get off Lexapro.

 

I can tell you the sexual anesthesia and emotional blunting will go away in time. How long differs from person to person. You're young, keep yourself physically healthy and you probably will recover sooner rather than later.

 

And yes, you will find a job. Don't worry about that.

 

We're here for you, my friend.

 

...-"Will psychiatry EVER conduct unbiased longitudinal studies on what these drugs do to patients' brains long-term so they can start to look for a cure for symptoms such as mine?"...

 

I have some news about this, will post soon.

[Claudius]

I can relate to this post. Though I have never been in the tapering process because I went CT just to enter the hell of protracted WD, and even before my final CT the last 2 years or so were already ruled by the terror of repeated CT attempts and reinstatements (which always lifted the symptoms 100% and made me feel "comfortabely numb" agan so the dime never fell for me).

And now still suffering 3.5 yearsa fter CT I have the same questions as you. Luckily I got financial support because I was compeltely unable to perform even the easiest tasks regarding to work because of the extremely torturous symptoms: auditory overload, psychotic thinking and awful electrical jolts. And also during the forst year of WD (2008) I lost about one-third of my savings due to the total coollapse of the stock finds I had parked half of my money in... and just had to sell the remaining on the absolute depth in MArch 2009... in fact I had bought those stock in early WD when I was already sick and this was one of the impulsive gambling activities many people in WE describe... and add the subsequent financial crisis on it and the disaster was complete. I was only an inch away from suicide and without my mother I would have ended my life almost certainly end 2008, begin 2009.

But some things have improved now, I still have some savings left and we must just be patient and hope for more recovery.

 

Healing, I am very curious about the "news" coming from psychiatry. I get also sone signs that there is a paradigma shift hgoing on, but my source told me that it will not before the next generaltion to benefit from it... For me it is clear that the knowledge is available right now, but it is just the reluctance and the money which prevents the system from acting...

HAng on and I pray for healing to all of us!

[cinephile]

Thanks everyone. I really needed it.

 

If you feel up to it, please remember us your story (the "original condition", side effects/symptoms over the years, poop-outs, if any, etc.) - the more we know, the better we will be able to help you.

I have pasted my history on these meds below. This is actually the post I made to Robert Whitaker's site, "Mad in America."

 

And thanks especially to Sur for the words and, of course, for this site. I truly hope this site will be the epicenter of desperately overdue change.

 

***And yes, I am VERY curious to hear anything you have to share about any data/research/studies on the long-term effects of SSRIs and how, possibly, a treatment for the long-term symptoms might arise (my god, is it possible?). PLEASE share asap as that would help me more than anything at this point!

 

-------------------------------------------------------

The End of an Error: (Hopefully) Bringing my 13-Year Odyssey on SSRIs to a Close

 

Well, where to begin? There’s almost too much to say. There’s too much to say because I’ve never been invited to speak about my psychiatric (mis) adventures before. You see, no one, outside of online message boards and a psychiatrist I recently saw after 13 years of SSRI use, ever seemed to take my concerns of being needlessly medicated for over a decade too seriously before. It’s amazing for me to realize how much I’ve had bottled up for so long. I am deeply appreciative to Mr. Whitaker for allowing me such an opportunity. As I told him in the email I sent him, he is a journalist in the truest sense of the word. He is giving a voice to the voiceless.

 

I’ll begin with a brief summary of my medication history:

 

-At age 14 (1998), I had my first bout of severe anxiety. My dad had just been diagnosed with Hodgkins disease and it hit me hard. I began feeling faint and dizzy in school and felt like I was losing my mind. My dad told me I was having panic attacks, and that I should go on Paxil, which he was on as well, to help my anxiety issues. I went to my first psychiatrist to discuss the medication and I was quickly put on Paxil at age 14. My psychiatrist said it was effective and well-tolerated. Thus began my journey into psychiatry, one I am still on at age 27. But I'm trying desperately to get off the psychiatry train, and hopefully will be off my med by next year. But more on that later.

-I took the Paxil (at varying doses) for the next few years, but decided eventually I should get off it. I couldn't feel any positive effects from it (I was still given to bouts of anxiety) and I knew it was no good being on a med if I didn't need to be. I asked my psychiatrist how to withdraw from the Paxil. He told me I could halve my current dose, stay on that dose for a couple days, then halve it again, stay on that dose for a few more days, and then stop.

-I did just that and felt fine for the first few days. Then, the trouble began. I woke up one day and my brain felt like it was in a frying pan. I got the brain zaps that felt like my brain was sizzling every time a thought came into my head. I was basically bedridden for a few days until I gave up and went screaming to my psychiatrist to explain what was happening. I'll never forget his response: he was utterly puzzled and seemed less than concerned. If anything, he seemed scientifically interested and nothing else. He said I could basically get back on the Paxil and the symptoms should go away. He didn't know how to withdraw from the medication any other way.

-I left that office utterly shattered, and truly scared for the first time in my life. "What if I'm on this stuff for the rest of my life? What will it do to my brain?" I asked myself. And I was scared that my psychiatrist knew as much as I did about withdrawal. That is, nothing.

-So I swallowed my pride and went back on the Paxil.

-Sometime in 2005 (it's now been seven years since I've been on Paxil), I switched to Lexapro according to my new psychiatrist's advice. I successfully switched from Paxil to Lexapro without any withdrawal. However, it was when I was on Lexapro that I started having side effects which persist to this day. First was my short-term memory loss. Suddenly, I couldn't remember why I got on the computer, or which website I wanted to visit. This has steadily gotten worse over the years, to the point where I forget why I went into a room or store, and sometimes I get so disoriented I forget where I'm going. Never before the Lexapro (or certainly any SSRI) did I feel this way.

-But the most disturbing symptom of all has been the increasing anhedonia and loss of libido. In 2006, I added Effexor to my Lexapro as my dad had told me that his doctor told him that sometimes a combination of psychiatric medications helps some patients the best. At the time I didn't realize how risky this was, as I could have ended up with serotonin syndrome. But my primary care doctor never told me of any of the risks (obviously because he didn't know), instead just disappearing into the med closet only to return a few minutes later with a sampler pack of Effexor.

-Almost immediately after starting the Effexor my libido, enthusiasm, and motivation went down the drain. I very rarely had any erotic thoughts, spontaneous erections, or morning erections. My erections were noticeably weaker and when I ejaculated it felt almost painful. Might I also add that at this time I had accomplished one of my most cherished life's goals: having a girlfriend and losing my virginity. But it was nearly impossible to perform due to the clobbered libido. I SIMPLY CANNOT TELL YOU HOW EMOTIONALLY DEVASTATING THIS WAS. For over a decade I had looked forward to the moment when I was intimate with a woman, and time and time again I failed because I had no libido. When I did manage to perform, it felt more like a job or was nearly joyless. I would not wish this devastation on my worst enemy. The shattering conclusion that it was the medication -- a medication that I had learned first-hand was incredibly difficult to withdraw from -- was utterly devastating. Still hurts. Do you know that pain? Do you feel the dreadful weight of a secret shame that you must carry everyday within you? The secret shame that you have been chemically neutered at age 23 by a med that is murder to withdraw from?

-I managed to SLOWLY withdraw from the Effexor (bead by bead) without symptoms, but I believe that is because I was still on the Lexapro, which absorbed much of the shock. I continue to be on Lexapro, which is my only psychiatric medication.

 

Now, with my psychiatric medication history now known, I’d like to talk about the impact it’s had on my life and the profound failures of psychiatry I have witnessed first-hand.

 

 

First, I must again state how devastating it is living with these sexual side effects. My genitals often feel so numb they feel invisible. They don’t feel attached to my body. It’s almost like my penis is dead tissue 85% of the time. I will also admit my orgasm intensity has decreased by an average of 60%. At its worst, my orgasms are often no more pleasurable than sitting on the couch after a long day of work.

 

 

Often these days my thoughts gravitate to the horrifying possibility of PSSD. For those who don’t know, PSSD stands for Post-SSRI-Sexual-Dysfunction. For some (still unknown what percentage) people, sexual dysfunction (everything from low libido, erectile dysfunction, pleasureless orgasm, and loss of lubrication) can persist for years after they stop an SSRI, and there is some preliminary scientific speculation and certainly anecdotal evidence that in some cases, it may be permanent.

 

 

And, unfortunately, this is not an isolated incident. There is at least one online support group with well over 1,000 members who are suffering, in varying degrees, from the same issues. What I find most interesting is not all of them were on SSRI medication for very long for them to have these devastating effects. Some were only on for a year or less. To this day, nobody can predict who will develop PSSD. For now, every time any patient begins taking an SSRI (and probably other psych medications) they are playing Russian roulette with their sex life. At best, this is unacceptable. At worst, it is monstrous.

 

 

I will now refer to a metaphor to explain what it’s like living with SSRI sexual side effects. I have heard that some military prisoners have been tortured by being sodomized with a coca-cola bottle. The point of the torture is less about the pain of the sodomy but instead the lifetime of mental torture that follows because every time the prisoner sees the Coca-Cola symbol (a ubiquitous symbol found all over the world), he will be mentally tortured by the memory of the sodomy and be tortured all over again.

 

 

Now replace the torture with SSRI sexual side effects and the Coca-Cola symbol with any representation of sex in modern American life, which I’m sure you’ll agree is just as ubiquitous, if not more so, than the Coca-Cola symbol. For those of us suffering with SSRI side effects or those off SSRIs and suffering from PSSD, we are painfully reminded of our dead sex lives every time we see sex on TV, on the radio, in a film, on the side of a bus, on a billboard, or simply when we see a happy couple in everyday life. Might I also add that I often go to sleep hearing my next-door neighbors (a young couple my age) passionately making love? How do you think that makes me feel?

 

 

In addition to the blunting of my sex drive, my motivation and emotions have been blunted. I noticed this almost immediately after taking the Effexor 5 years ago and it still hasn’t improved much since I got off the Effexor in 2008. I cannot emphasize enough how very alienating and terrifying it is to feel so blah and apathetic most of the time. I know deep down this is not depression. I’ve seen depression before in my father and in others and this is not it. The best way I can describe what I’m feeling is a disconnect between a pleasurable thought and an emotion. I rarely get excited about things anymore and when I do, the excitement quickly fades as I begin to do what I was excited about. It’s truly strange -- it’s like my emotions draw a blank and give up. It’s like there’s a blown circuit between my thoughts and my emotions. It was similar with my libido with my ex-girlfriend. When I greeted her at the door I would become aroused, but as soon as we started kissing, my libido would go dead and I’d be almost puzzled as to why I was kissing her and how it could possibly be pleasurable. Again, a terrifying, inhuman feeling, and not something I had ever experienced before my mega Effexor/Lexapro combination dose.

 

 

And my lack of motivation has made my life sheer hell for the last few years. Again, I doubt I’m depressed. I don’t dread waking up and it’s not a battle to get out of bed. Often, I actually feel pretty good waking up. But, slowly but surely, as the day goes on the crushing deadness and blah creeps in, and often I can’t find anything to do but sit in front of the TV, mindlessly scanning channels. I never felt this way before the Effexor/Lexapro combination.

 

The worst part of my situation is the utter isolation. All I needed was a hug and an open mind from a psychiatrist or even a general practitioner. But I never got that until 13 years later, when I finally met one psychiatrist who listened. But by then, it may have been too little, too late. I say may have been because he was ultimately the psychiatrist who agreed to my current tapering plan and I may be able to get off the medication this way, after 13 long years. But who knows if I can? Will the withdrawal be even harder since the medication has had an additional decade to re-model my brain? Who knows? After all, psychiatry offers no scientifically-backed plans of action to ease the withdrawal symptoms, or even how to withdraw safely.

 

And I know I’m not the only one who feels this sense of betrayal. Aside from my recent, extraordinary and open-minded psychiatrist I have instead routinely received a mixed bag of apathy, disbelief, or sometimes outright hostility by psychiatry and medicine in general.

 

In fact, I recently had my annual physical with a new physician. From the beginning of the visit I knew something was wrong. He breezed in with a laptop in his hands and the standard-issue physician apathy. I was put off by his ice-cold demeanor and total lack of interest in my health. He also seldom lifted his eyes long enough from his laptop to make eye contact with me. I was so miffed that I gave him monosyllabic responses back, and those responses, coupled with my usual SSRI-induced blunted emotions, prompted him to give me an on-the-spot bipolar diagnosis. I laughed in his face. I simply couldn’t believe that a doctor (NOT even a psychiatrist, mind you) who had only known me for five minutes would jump to such a conclusion. He also acted surprised when I mentioned how hard it was to withdraw from SSRI meds; he admitted he’d never heard of discontinuation syndrome. I left his office, determined to never visit him again, and very glad I still had my intellect intact. For, you see, my intellect was able to make me realize how sick the medical system has become to suggest I was bipolar after a five-minute talk. I was also aware that bipolar is the new fad diagnosis, as popular now as depression was over twenty years ago when SSRIs began making the rounds. I also knew I dodged the polypharmacy bullet by not agreeing with his bipolar diagnosis and thus not signing my life away to another psych medication.

 

So, I quickly realized I had to take matters into my own hands. Once I got over the initial shock that the psychiatric profession had no advice for me on how to taper off my medication safely, I took to the internet for advice. Yes, I know what you’re thinking: it’s dangerous to take medical advice from anonymous message board posts. But, as a growing amount of patients are realizing, they don’t have much choice. Neither did I.

 

I am currently following this message board’s tapering protocol. I have just begun my fourth month of tapering, and if all goes according to plan, I will be off my SSRI (Lexapro) in July of 2012. It will truly be the end of an era (or is that error?): free from 14 years of being on a medication I didn’t even need in the first place.

 

To those critics of such peer-to-peer message boards, I would simply like to point out that such sites simply fulfill a need that is not being met by the psychiatric community. It really is as simple as that. If psychiatrists could get over themselves and their religious devotion to studies and randomized controlled trials and start acknowledging the throngs of anecdotal stories, maybe such sites would disappear. And let’s realize just how pathetic it is that 1000s of patients, myself included, have to resort to the internet for medical advice that could have long-term consequences. Is this really how things are in America? Where we pay more for health care than anyone else in the world? How is this not a national disgrace?

 

And what happens if one day (hopefully soon) psychiatry wakes up and seeks to absolve its sins by setting in place a major overhaul of its practices and is loathe to prescribe mind-bending medications to patients for everything from low-back pain to diabetic neuropathy to insomnia to internet addiction to mild depression and anxiety as a first-line of defense? What will happen to the millions of psych med users across the world who are damaged by the long-term use of these medications? Will they be forgotten about (as we are now) and left high and dry? Will they be forced to continue to live dull, gray, sexless lives? Or will psychiatry do the right thing and clean up its messes and start researching how people like me and millions of others can heal our brains (hopefully naturally, through things like diet, exercise, and meditation) and regain our sexual functioning, our zest, our motivation, and our overall quality of life?

 

Thus I think psychiatry’s recovery and restoration of public trust entails three equally important tasks:

 

1) Begin conducting unbiased long-term studies on psychiatric medication safety that last for AT LEAST five years,

2) Shift the psychiatric model from one in which powerful psych meds are offered as a first line of defense to one where meds are offered as a last resort, and,

3) Begin research into why some people develop devastating, persistent side effects like PSSD and anhedonia and how these symptoms can be reversed, either naturally (preferably), or with careful pharmaceutical intervention.

 

But of course I’m not holding my breath. And anybody who has had a similar experience as I have had in the psychiatric gauntlet wouldn’t dare call me cynical. In the meantime, I am following a four-year plan to reclaim my life, which includes finishing my taper and then staying off ALL pharmaceuticals for another 3 years to let my brain heal naturally. And yet, each step of my recovery is fraught with toxic doubt and uncertainty. I honestly think this is the worst part of all of this. Even those diagnosed with cancer at least enjoy the luxury of knowing their chances of recovery and have a well-established medical culture of care to employ to aid in their recovery. But this is not so with SSRI users. Constantly I ask myself questions which nobody -- not message board members, psychiatrists, scientists, neurologists, physicians, nobody -- has answers to: Will I be able to get off the medication without catastrophic side effects? Who knows? How long will it take me to recover? Who knows? WILL I recover? Who knows? If I recover, will it be 100%? Who knows? Will I be able to love again and feel emotions deeply again? Who knows? Will I have to take another pharmaceutical to “rebalance” the imbalance these drugs caused? Who knows? Indeed, who knows.

[Healing]

Hi, buddy. I'm sorry you're having a clusterf*** of tapering effects and life stressors! Some days it really does seem unbelievable, outrageous, and utterly unacceptable.

 

You're doing an incredible job of surviving and learning and achieving even though you've been blanketed by these meds since 14.

 

As I read your poignant tale about having your sexuality messed with, I'm wondering if this is another example of how the alerting system seems to go into overdrive thanks to these serotonin drugs. You start to feel aroused, and your body seems to shut down as a safety precaution.

 

Our sexuality is such a precious force in our lives, intertwined with vitality, creativity, survival, attachment. I really believe your sexuality will not only heal, but be happier and healthier than ever. I really do. Unfortunately, you have to go through some more healing first.

 

Would you consider re-posting that great post you wrote to brunyan about sexuality and being a sensitive person? If you feel like it, maybe put it in "Finding Meaning"? I've already recommended it as insightful reading.

[stan]

hi Cinephile,

 

Constantly I ask myself questions which nobody -- not message board members, psychiatrists, scientists, neurologists, physicians, nobody -- has answers to: Will I be able to get off the medication without catastrophic side effects?

i think yes (even if at the end you retake a little 3/4 mg and retaper)

 

Who knows? How long will it take me to recover? Who knows? WILL I recover? Who knows? If I recover, will it be 100%? Who knows? Will I be able to love again and feel emotions deeply again? Who knows? Will I have to take another pharmaceutical to “rebalance” the imbalance these drugs caused? Who knows? Indeed, who knows.

 

for this i do not know because i am struggling myself

 

hang on

[alexjuice]

Hey Cine-

 

Thanks so much for sharing your story. I hadn't heard it before and there's significant overlap with my own history, though of course many of the names and deeds are different.

 

I am 32 and was started at 17/18 on SSRIs to deal with anxiety as you were. (Eventually I was misdiagnosed and given many more completely unnecessary meds.) I was, at the time, not very mature romantically. I'd never been on a date. I started having sexual side effects (in addition to a grabbag of non-sex side effects), but was too shy and embarrassed to discuss them at first. Eventually, I brought them up to little reaction from my doc. Sadly, I was so spun out from the side effects, it never occurred to me to be proactive. As a teen I had little support from my family and the doctor's lack of concern left me to make assumptions. This is temporary... or... Maybe he thinks I'm so sick that sex will never be realistic for me. What a tragic time...

 

When I started dating and having relationships, the sexual issues became more pressing. There were no easy solutions. Docs put me on ED meds like viagra but they didn't resolve the problems. I found myself being more reckless generally in life and discovered that certain illegal drugs largely alleviated my sexual dysfunction. But not reliably and not without massively negative consequences. Other than a few of these drug-fueled encounters, my only knowledge of how things should work came from first-hand memories from my pre-medicated teenage years. (that's an attempt at a pun).

 

In any event, I ended up on Effexor which made my sexual dysfunction much worse. I couldn't imagine my sexual problems being much worse when I got off. Unfortunately, they have worsened.

 

I am very shy still about talking about my sexual dysfunction, it's something so difficult to publicize. Also, I have problems in many areas so most days I am able to intentionally push my lack of sexual functioning out of my mind. It is on the good days however, when I see a hope for down the road, that the possibility hits me that this handicap that has impaired my entire adult life will never resolve. I don't like to see pretty girls in person or even on TV for your coke bottle reason...

 

I am not trying to hijack your thread, but I want to reassure you that there are people who understand what you're going through. I know the perverse hell you describe. I lived it, live it now, and will live it until I don't live it any longer.

 

Uncertainty is very hard for me to deal with. Why do I have these particular symptoms but not others? How long will I have them? Am I screwed for life? Why won't medicine do the right thing and freaking help me?

 

I have almost every thought that you mentioned. Yet still I say, hang in there, cine. Nobody knows and this cuts both ways. For every symptom you fear is permanent, it is possible the cure is in a paper being edited for publication right now.

 

But, you're human and you've been subjected to a horrible torture without offense. You have a right to feel anger. You have a right for others to accept the reality of what you've endured for what it is -- reality. It sucks that you have to spend the time and energy on these problems that are not of your making. It sucks that people made money in your suffering.

 

It sucks, I know. Believe me, isolation, I know.

 

So vent if you need to vent. You are entitled. I need to vent everyday in one way or another.

 

But also hang in. The final chapter has NOT been written. There's a lot of time for you (and for me as well). Time always tends to surprise.

 

Best wishes to you...

 

Alex.i

[compsports]

Cinephile,

 

I don't have the sexuality issues that you so poignantly describe.

 

But I experience that disconnect you mention. One moment, I will feel like doing a task only to experience the clipping of the feeling that you describe. It is like there is a wire shortage in my brain.

 

What is that about which is general question directed to the list for another thread so as not to hijack this one?

 

Anyway, thank you for writing what you did. I will keep my fingers crossed for you.

 

CS

[cinephile]

Wow, thanks so much everyone. I honestly think hearing supportive things from people who know EXACTLY what I'm going through is more therapeutic than going to a psychologist who may be very sympathetic but still just can't completely get it since they aren't going through such a thing. One of the things I hated in the last few years was going to a therapist, exactly for this reason. They'd try to help me with good advice and CBT (which DID help somewhat) but somehow their advice just missed and fell short. I could never put my finger on why. I mean, I wasn't necessarily DEPRESSED, just apathetic. And yes, I know apathy is often a symptom of depression, but you guys know the chemical apathy I'm talking about. But the psychologists, not knowing any better (how could they?) just assumed I was depressed. But of course their help didn't work that well and I stopped the therapy not really feeling much better, certainly no more ALIVE. This caused me a lot of pain as I felt I was untreatable but THANK GOD I didn't go running to my psychiatrist for more meds, as I had gotten wise to the med scam by then.

 

If anything, learning about what's most likely REALLY happening to me (that is, symptoms from long-term drugging) helped me cope with the above realization that psychology can't do much to help me right now. I don't have to spin my wheels with all kinds of therapy, supplements, etc only to be crushingly disappointed when they don't work. I can only wait and in the meantime keep busy in other areas of my life. Doing nothing (that is, taking NO MORE psych meds and not even supplements) is really the best thing I (and others in my situation) can do right now, and I don't think that's nihilist in the least. It's simply the safest and most sensible option when "doing something" in this case means opening yourself up to more potential harm.

 

*In particular I want to thank alexejice for his very thoughtful post. Thanks so much! I may actually print it out and store it somewhere safe for times when I really need some encouragement!

[Altostrata]

As for the sexual anesthesia -- I had it to some degree when I took an SSRI, about 6 years total. Post-withdrawal, it was severe, I had the genital numbness cine describes. But it gradually went away over a couple of years. Over the next couple of years, sexual sensation gradually came back and now approximates normality.

 

I'm a post-menopausal woman, I would expect younger people to heal faster. It is very gradual, though.

[cinephile]

Everyone -

 

I don't know who else to reach out to. I'm at my wit's end. I'm a complete mess. Somebody please help.

 

Alto? Alex? Anyone?

[jr1985]

Hello cinephile, I'm sorry you are suffering. I don't know if there is anything I can say that would make you feel better, but please know that you are not alone in this. Maybe you could explain what exactly is wrong? What symptoms are you experiencing?

 

Hopefully, one of the experts will be along shortly to provide support.

[Altostrata]

cine, I answered your pm.

[Barbarannamated]

Cine,

I've missed your eloquent writings and hoped you had moved on because you were feeling better. I'm so sorry to hear you're still going through hell. I had perked up a bit then got knocked back again by a few stressors about a month ago (at about 1 years post Pristiq).

Just wanted to say I've missed you. If you want to share/vent/etc, we're here.

B

[Altostrata]

cine is doing much better now.

 

We love you, cine!

[elizabeth11]

Glad to hear Alto helped!!

[Dani]

Has anyone heard anything from Ajay?

[Barbarannamated]

Need to say... your message to Alex touched me beyond words. If it's possible for a heart to break and swell with "pride" at the same time, mine did. You are both amazing men.

[cinephile]

Thank you so much Barb. Unfortunately I've taken a turn for the worse lately. My taper turned out to be too rapid after all and I'm trying to slowly reinstate at a low dose. I hope to post about this later. I'm convinced we are some of the strongest people on earth.

[Rhiannon]

Thank you so much Barb. Unfortunately I've taken a turn for the worse lately. My taper turned out to be too rapid after all and I'm trying to slowly reinstate at a low dose. I hope to post about this later. I'm convinced we are some of the strongest people on earth.

 

Keep us posted.

 

I have to agree about being strong.

 

Hang in there--once you get stabilized you can taper more slowly. Especially at the lowest doses, 10% a month can be way too much for some people. It seems that the tinier doses are still extremely potent in their effect and it seems like there's a shift towards the end where those low doses can be really tricky to remove.

[alexjuice]

Thank you so much Barb. Unfortunately I've taken a turn for the worse lately. My taper turned out to be too rapid after all and I'm trying to slowly reinstate at a low dose. I hope to post about this later. I'm convinced we are some of the strongest people on earth.

 

I'm really sorry, cine. You're doing a great job. I really hope things turn soon. I believe they will though the matter is time. For me, patience is the toughest thing in the rough spots because I feel like I have to do SOMETHING and I end up trying EVERYTHING. When I have stuck it out, it's come back for the better... Stabilizing and moving more slowly sounds smart thinking to me.

 

Hang in.

 

Alex

[Nikki]

Cine...I am not tapering at this time, but I did taper Lexapro. I could never taper 10% a month or 10% every two months or any other time.

 

10% is alot for most people. Getting to the lower doses is much more difficult. For many, the 10mg mark is when it can become more difficult. At the 5mg. dose it is even harder.

Generally. It's not written in stone, but alot of people feel this way.

 

If you read Strawberry's Webpage and a few others like Rhi, you can see how small their cuts are. From what I can see from your signature you may want to go back up in dose and settle down. Someone once told me to 'throw out the calendar'.

 

Once you settle down, you will feel better, and just remain there for a much needed respite.

 

Best regards

Nikki

[cinephile]

This is the problem I've had that prompted me to make my panicked post about six weeks ago.

 

Basically, I get a brain shock/adrenaline rush as soon as I start drifting off to sleep and I feel a feeling of sheer dread and terror for about 2 seconds after I wake up. Then I feel fine. I've also noticed I've been very hyper-vigilant/hyper-aroused during the day as well (a slightly elevated startle response, for example). This rush only happens at night.

 

But this symptom has been hell on earth. For the first week I don't think I slept at all, or maybe a few hours. I remember it was so intense towards the end I was shivering and felt cold from the extreme exhaustion. I ended up being hospitalized as the extreme sleep deprivation led me to think the blackest thoughts I'd ever had and actually led to suicidal ideation. I have NEVER had this kind of depression before Lexapro and those thoughts were traumatizing themselves!

 

I also find myself (usually) waking up around 5:30 AM. Sometimes, however, (especially lately), I can sleep in until 7:00. And 9 times out of 10, I can't sleep again once I wake up. I toss and turn and get into a kind of half-sleep/dream state and then immediately snap awake.

 

On top of that, I have a VERY strange issue where I feel like I can't relax. As soon as I start to relax, my nervous system almost feels threatened and goes BOING! and rudely snaps me out of it and makes me anxious. I've noticed this while "getting lost" in something like reading or music -- it's like whenever I let my guard down, BANG! It's hell. Just...hell.

 

Now, I've been under a tremendous amount of stress/uncertainty/fear for the last two years (actually six years if you count when I first relocated to Texas) and have driven myself much, much too hard (to the point of exhaustion), so that most certainly plays a factor I'm sure. But the Lexapro withdrawal MUST play a role right? To the best of my recollection, I first had some of these shocks around maybe March (a week or two after completely off Lexapro), but they were milder and more transient. I had to keep the TV on to feel safe enough to fall asleep, but I DID fall asleep and didn't think much of them.

 

But since late May, it's been a totally different story. I take Klonopin 1mg nightly to sleep, along with extended release Proponolol to suppress the shocks and it does work. ***PLEASE don't tell me horror stories about daily benzo use and withdrawal. That's the last thing I need right now. Frankly, if I weren't on these meds, I'd be nonfunctional.

 

And I have to be functional, as I work AND am in a graduate program! On top of all this, I live alone in an apartment and the isolation is awful and my financial situation is not looking too certain. I can't just move back in with my parents either because they both have one-bedroom apartments AND my dad lives in TX (I live in MA), and my mom lives an hour away.

 

I just feel absolutely wiped out. Getting out of bed and dragging myself to work can be a herculean task sometimes. In fact, I've been late a lot lately because I literally at the last second decide to go into work after debating whether I should just stay home.

 

I used to also get morning nausea, but thank god that's gone now.

 

So far, I think the only non-pharmacological things that have worked have been regular walks and a strict sleep routine (always in bed around 11, every night).

 

Has anyone else had this symptom? And at this unrelenting intensity?

 

What confounds this issue is I've heard of people having this problem even when they've never been on psych meds, and didn't even feel stressed! I feel more confused and lost than ever when I read that stuff. And then I read that some people have had it for 40 years and on and on...

 

I think all the stress/fear/exhaustion over the years primed the pump of my nervous system and the Lexapro withdrawal was the last hammer blow.

 

I just feel so stupid, angry, and hopeless over this. I feel like I've junked my nervous system forever and there's no way out of this except polypharmacy. How could I have done this to myself?

 

What I really need right now is some support and well-wishes. I love you guys!

[enufodat]

Hi. I am not going to offer any advice, since I just don't know enough. But two things strike me. The first is, really, seriously, try hard to be kind to yourself. To anyone reading this its very obvious that you've simply had rough and unfair breaks, that you are suffering, and deserve nothing but support and care and encouragement. Believe me, I know it's hard to do so, but try to give those things to yourself as much as you can. The second is that you are managing to hold down a job and move through graduate school in the midst of all this. That is an enormous accomplishment and what you should be is proud of yourself. Honestly, as I read what you wrote I was filled with admiration.

 

Hang in there. Very best wishes,

 

E

Edited July 19, 2012 by Altostrata
fixed typo

[Jemima]

I don't know if reinstating at a low dose would do you any good at this point (Alto?), but one thing you can do immediately is to stop blaming yourself. I've noticed this in myself (very difficult to overcome, I know) and in post after post on this forum. Unless your doctor sat you down and had a long, detailed talk with you about psych drug side effects and withdrawal problems before you started taking them, you are not to blame! We have all been deceived by Big Pharma to a criminal degree.

 

It's awesome that you're able to work and go through grad school. I never could have done that during my withdrawal from Lexapro, which I know now was far too fast.

 

Try to treat yourself like a very good friend who's going through a period of serious illness. Be gentle and loving to that friend, okay?

[alexjuice]

Cine,

 

Wow, so sorry things have gotten so dark. I've been suicidal and it's a truly dark place when daily life becomes such that the thought of the escape starts to sound better than the thought of going on. In my case, and you may have touched on this, the little things that extreme desperation bring, that's when things get really scary. I started thinking things besides just suicide that were weird, dangerous or unhealthy. I don't know. Once I started contemplating suicide seriously a switch turned and things went to a very dark place. Probably I was trying to cope and "hey I might kill myself anyway" so what I do and think at this point doesn't matter.

 

I'll do anything to escape this hell! That was my experience. I DID try to kill myself and was in three institutions for 8 weeks afterwards. I didn't care then, I wanted out. It gets so hazy because at the time I'd just been cold turkey'd off a med and put on a bunch of new meds and my brain was all spun out. I didn't feel like myself even. I'm happy and glad to report that I'm not there anymore.

 

I want to reassure you that this is not the end of the line for you, cine. We've been around too long. This is iatrogenic... medication, dysregulation, nervous system gone amok.

 

You will get better. Think big picture. You're a young man. You've got time to heal.

 

It's amazing that you're able to work at all, on the one hand. I applaud you (you deserve to applaud yourself) for getting to a job and grad program while dealing with this. Very few could which shows amazing strength and determination.

 

Parts of me want to give advice but that's not the main thing I want to say... Do know, you're supported here. Even if we are dispersed through the English speaking world, we are one of the only reliable resources we have. Time, each other and self-care. It's enough to comeback. I believe it for myself and believe it for you too. Its not a belief I subscribe to cuz it makes me feel better, though it does. I believe it because I believe it true, whether it'd be good for me or no.

 

Finally, it sucks. There's no getting around it. You didnt deserve it, you didn't knowingly take a risk and came up with the short straw, nothing like that... You just got screwed. It sucks.

 

But it's no where near over. You'll be back.

 

Keep in.

 

Alex

[Brandy]

Cine, I recognize the phenomena you're describing - to a T! The jolting awake, the exaggerated startle response. All completely unlike anything in my experience (and I'm a lot older than you!) until I went off paxil.

 

The good news is that all that is gone with me now, and has been for some time. (I'm six years off paxil, and have not had this in quite a while, thank goodness.) Given that you never had this before w/d, and that it started a fairly short time after you went off the med, I strongly feel this is w/d so please don't worry that it's anything more.

 

Alto once gave a very good explanation of the hyperreactive alerting system during sleep that happens to some of us in w/d. I think the related symptoms that occur during the day (startle response through the roof, etc.) are probably physically related. And due to w/d of course.

 

But I think you're trying to do far too much. I know all too well how one can't usually just stop the responsibilities one has, but in my case I realized I had to "re-define" them and really prioritize and make some difficult choices. Not true for everyone in w/d (just wanted to put that out there to avoid scaring people needlessly), but some of us do have to make lifestyles changes. Then it's a question of what we realistically can do.

 

Is there any chance you can take a medical leave from school and/or work, and reduce pressures as much as possible. Maybe some things can be deferred til you're better while continuing on a limited basis on the things that are harder or impossible to defer?

 

No one likes to do this, I know. Hopefully you have a doctor who will work with you on this, if you need to go on disability or need medical documentation for work or school. Emphasis would need to be on this being a medical problem that requires treatment and rest.

 

I'm so very sorry you're having such a hard time, but know that this will go away and you will be able to resume the things you want to do later. But I think you need to stop pushing yourself so hard right now. If necessary maybe switch to part-time classes and live with your mom for a while? (Just tossing out ideas - only you will know what is possible in your situation.)

[Baxter]

cinephile - I am so sorry that you're going through this. It does get better - slowly - with time.

 

that panicked startle when just drifting off to sleep? Been there, done that nightly for a year - still do it upon occasion. The dead of night wake-up call? Yup, nightly. I have no magic words, no advice - except if klonopin and Inderol help, go for it...Night panic is no joke. Getting enough sleep is crucial. Feeling like you can call some shots while your nervous system is running amok is important.

 

Here is what I concluded and it helped me handle the bolt upright waking. It did NOT resolve the problem, but understanding is at least something to hold on to when I feel like I'm sliding into the abyss. Your fight/flight/freeze response is broke. If you and I have anything in common beyond those hellish symptoms, then that response will slowly drift toward more tolerable - as did your AM nausea. The trick that I tried (with varying degrees of success) was to say, as a scientist rather than a frightened, aged, exhausted tech writer (dying field) trying to get enough sleep to take another day at a shrinking division of a struggling company during the worst economic conditions since the 1930s... "Aha! the flight/fight system is kicking in. Yup, there it goes again. Ok, now I can relax and get some sleep."

 

Then I would do deep breathing, counting breaths. I was able over time to separate that physical activity from my "self" whatever that is. Don't take it personally. And don't let waking in panic scare you. It's just the autonomic nervous system resetting repeatedly due to withdrawal. This knowledge gave me a little distance on all the physical manifestations of withdarwal. This is what your edge-of-sleep alerting is - a physical symptom of withdrawal. So, even if that info doesn't make the sh*tty symptoms go away it can be helpful nontheless. My favorite analogy: it's like the relief I felt when I found out that intractable shoulder pain was due to pinched nerve in my neck. I was not crazy/somatasizing or dying of bone cancer. Still hurt, but jeeze it was due to a non-fatal cause and the symptoms could be controlled. You feel me?

 

Do you do any mind body stuff like meditation or yoga? I learned to do mindfulness meditation through the Mindfulness Based Stress Reduction program started by Jon kabat-zinn (UMassMedical). Practicing that type of endeavor can be very helpful during the dark night of the soul. Stuff like that is not a quick fix, but I have found over the five years of my withdrawal and stalled taper, it has a subtle power.

 

YOu're not alone. You are going through a rough, miserable patch while accomplishing a great deal as Jemima and Enuf said. W

 

Hold on, you can do this,

Deborah

[wantrelief]

I am so sorry for what you have been through. I really relate to the symptoms you are describing. I have had what I think are very similar sounding symptoms while trying to taper Zoloft. Whenever I've gotten to under 40 mg Zoloft, something stressful will happen in my life and then my whole nervous system goes haywire. I will sleep maybe a couple of hours and then will just wake up, unable to go back to sleep. Then the next day, I'll be completely wired - I won't feel tired at all despite not sleeping much for days in a row. I instead feel really intense anxiety - it is impossible to feel calm or relaxed. Other physical problems then start, such as no appetite, nausea, etc. I had an episode like this also at the end of May and was having almost constant suicidal thoughts. It all really scared me and I too ended up on 1 mg Klonopin to help calm my nervous system down and to be able to sleep. This time, however, going up on Zoloft hasn't helped at all as it has in the past so I am now attempting a switch to Celexa. So far it is going well but I've never switched ADs before and am nervous about how it is all going to go. It also scares me to now be on a benzo again - I was on Klonopin for a few months a few years ago and had successfully tapered off of it. It sucks to be back on it but I felt I had to do something and it has at least helped me feel functional again. I also support myself and have a very stressful job so understand where you are coming from on this aspect to your life too. I will take a medical leave if I have to but for now am trying to keep working.

 

I too worry that ADs have screwed up my nervous system - it feels like it has messed up my fight/flight response so that I can't tolerate stress anymore and makes me wonder if I'll ever be able to be off of ADs. So I also know how you are feeling about no way out except drugs.

 

It really sounds like we are in the same boat. I am sorry not to have a success story to share with you but I do hope it helps to know you are not alone.

[jr1985]

I seem to be experiencing this now too. It's no fun.

[dalsaan]

Hi Cine,

 

I had the hyper alert stuff (but not to the level you have) I could be exhausted, struggling to keep my eyes open and then as soon

as I lay down to sleep - ping. My body was wired, too wired to sleep.

 

I gave up trying to sleep and just focussed on relaxing - deep breathing etc and started listening to hypnosis apps on my Iphone. this helped a lot. More recently I have started taking Taurine

at night.

 

I can now get to sleep and pretty quickly but wake up at 3 and thats it.

 

I am finding the lower I go on my dose the more anxious I feel

 

good luck

 

dalsaan

[cinephile]

THANK YOU so much everyone for all the wonderful words. They mean so much.

[Rhiannon]

WOW, I was going to say some stuff, but then I read through these posts and anything I was going to say has already been said. What a great group of folks on this forum.

 

But I've never let the mere fact that it wasn't necessary for me to say something, keep me from talking. :-)

 

Yep, about the hyperalerting when you start to relax. That is to say, I haven't had it a lot myself, but I remember reading Gianna's description of it and talking to her about it, and I think maybe Alto has written about it on this site too. It definitely happens to other people too. There's a neurological explanation that I don't know right now but I did hear it once or twice.

 

I think probably the stress you're under is aggravating the withdrawal you're experiencing as a result of completely getting off the Lexapro. I think it will pass with time, but it will pass faster if there's any way you can reduce or minimize stress right now--I like the idea of taking some leave, actually.

 

I've been doing a lot of reading lately about the amygdala and medial prefrontal cortex and the fight/flight/freeze response, and one of the things that comes up is that the MPC can soothe and control the amygdala, but stress really interferes with this. So stress is undoubtedly part of why you're having so much trouble right now.

 

Absolutely don't worry about the benzos right now! Just keep your dosage to a minimum, don't updose, and when you've recovered from the Lexapro taper and withdrawal you can taper. You know how to taper slowly, and that's the main trick with benzos, don't do anything abrupt.

 

Also, Baxter's suggestions really have been shown in studies to help engage the MPC and help it regulate the amygdala. By being mindful, explaining to yourself what's happening (your amygdala is overactive), consciously reminding yourself that you are in no immediate danger and everything is actually okay, and if you can, doing meditation and affirmations and visualizations and that sort of thing, you actually engage the higher centers of the brain and strengthen their ability to feed back to the limbic system and help calm it. It's not going to be drastic but over time new connections really do build up. Worth a try, anyway.

 

Okay, so, there ya go, like I said, nothing somebody else hasn't already said, but giving advice seems to be my way of saying "I care about you, my heart goes out to you, and I want you to feel better, and I'm so sorry about what you're going through."

 

You're a good person. You've helped me. I wish I could fix it. Thank you for being you.

[Altostrata]

cine, I added your update to your Intro and Updates topic.

 

Sorry to hear you're going through this. These are classic withdrawal symptoms, it seems you tapered the Lexapro a bit too fast. As you've told me, your symptoms started while you were tapering. When was your last dose of Lexapro?

 

I can hardly add anything to the wonderful advice you've gotten from others here:

• enufodat: "try hard to be kind to yourself."
• Jemima: "Stop blaming yourself....Try to treat yourself like a very good friend who's going through a period of serious illness. Be gentle and loving to that friend, okay?"
• alexejice: "You will get better. Think big picture. You're a young man. You've got time to heal."
• Brandy: "know that this will go away and you will be able to resume the things you want to do later. But I think you need to stop pushing yourself so hard right now."
• Baxter: "do deep breathing, counting breaths. I was able over time to separate that physical activity from my "self" whatever that is. Don't take it personally. And don't let waking in panic scare you. It's just the autonomic nervous system resetting repeatedly due to withdrawal."
• wantrelief: "I do hope it helps to know you are not alone."
• jr1985: "I seem to be experiencing this now too. It's no fun."
• dalsaan: "I gave up trying to sleep and just focussed on relaxing - deep breathing etc and started listening to hypnosis apps on my Iphone. this helped a lot."
• Rhi: "You're a good person. You've helped me. I wish I could fix it. Thank you for being you."

As you and I have discussed at length, you might go back on a small amount of Lexapro, even 1mg, and taper by micro-amounts after stabilizing. This might help, and if it does, it would be better for you than becoming dependent on benzos.

 

The longer you wait to try this, the less likely it is it will work for you.

 

Have you darkened your bedroom? This can reduce the startling in the early morning.

 

Being lonely can be very painful, I know. There are three ways you can deal with it: Suffer it, accept it, or do something about it.

 

We talked about your joining some kind of club that might meet once a week, maybe a chess club, or volunteering at the ASPCA so you can get some quality time in with animals.

 

I know you might feel you don't have the energy to do this. Are there people who act friendly to you at work or school? How about soaking that in whenever it happens, just as a short-term strategy to soothe that part of your soul, until you get the energy to reach out more.