FallingMan: Damaged by Paxil / Living In a Nightmare

[FallingMan]

Hi everyone,

 

I have been following this website and forum for several years, and would now like to share my story because I think it’s important to get the information out about what these drugs can do to people.  I am a 41-year-old male, and I have now been off all medications for over 36 months.  Unfortunately, I have not experienced much in the way of healing or recovery from whatever these drugs did to my brain and nervous system.  Please be forewarned, I’m sharing a lot of details about my experience, so it’s a long post.

 

My experience with psychiatric drugs began in 2007 at the age of 25.  I had recently graduated college and was having some difficulty with my career path.  I ended up accepting a job that was going to be very demanding with long hours, which caused me to start feeling very overwhelmed and anxious.  I was having trouble sleeping and felt a need to escape from the situation I was in, but also felt I didn’t have any options because I needed the income.

 

In retrospect, I should have realized that demanding, high stress jobs are simply not a good fit for certain people – including me.  Admittedly, I have always been somebody who was prone to anxiety, overthinking, and sometimes low mood.  Generally, these issues would be relatively situational and transient in nature, and would resolve on their own in time.  I believe now that had I simply walked away from that job and looked for something else, in time things would have resolved and returned to normal as they always had before.  I wish I had sought counseling to better learn how to deal with my anxious thoughts, and I wish somebody would have reassured me that anxiety can be a normal response to stress and that there was nothing inherently wrong with me.

 

Instead, I questioned why I wasn’t able to deal with the stress and demands of such a job.  Other people are able to, so there must be something fundamentally wrong with me, right?  Maybe something like… a chemical imbalance.  By that time, I think the pharmaceutical industry’s “chemical imbalance” marketing campaign had really taken hold in our culture.  It definitely must have planted a seed in my mind.  I remember thinking back to the old Zoloft television commercial with the sad little blob who had a chemical imbalance, and coming to the conclusion that must be what I had.  The direct-to-consumer pharmaceutical advertising in the United States is insidiously effective in the way it permeates our society to believe we are broken in ways that only their drugs can fix.

 

I ended up going to my doctor where I filled out a short questionnaire about how I had been feeling for the past two weeks, and was diagnosed with Generalized Anxiety Disorder and Depression.  I was prescribed Celexa (citalopram). I was also given Xanax to take for the first couple weeks as my body “adjusted” to the citalopram.  Part of me felt relieved and legitimized that I had a medical diagnosis for what I was experiencing.  Another part of me felt like this label now defined me and meant I was defective and wouldn’t really be able to live a normal or fulfilling life.

 

I felt somewhat uneasy about taking a daily pill that changes the way your brain works, but naively believed that the medical community had a full understanding of the inner workings of the brain and nervous system, and that there was no way my doctor would give me anything that wasn’t safe.  I reasoned if it didn’t work or caused bothersome side effects, I could just stop taking it.  I remember looking up patient reviews of SSRI medications.  They were generally positive, with people saying the drugs helped them.  Mixed in were also some unsettling reviews where people mentioned things like significant withdrawal symptoms and sexual side effects that didn’t resolve. Again, my trust in the medical system won out as I simply could not believe a drug that was capable of doing those things would be allowed onto the market.

 

So I started taking the drugs.  I believe I took them for a couple of weeks, but didn’t like the strange way they made me feel. I didn’t feel like myself.  So I stopped taking the drugs, but things didn't improve.  I experienced the first panic attack of my life while I was driving down the highway.  I started having issues with extreme anxiety, insomnia, dizziness, and DP/DR.  These things felt very different from any anxiety related issues I had ever experienced, but I was unaware of adverse reactions and withdrawal, so I attributed my symptoms to a worsening of my anxiety condition.

 

I went back to my doctor and was prescribed 20 mg Paxil (paroxetine).  Within a few weeks, I felt significant relief from many of my symptoms.  In some ways, I felt better than I ever had.  I felt almost a calm euphoria, and certain things like my self-consciousness seemed to almost disappear.  During this honeymoon phase, I truly felt I’d found my miracle drug.  There were also some negative side effects like emotional blunting, jaw clenching, and mild sexual dysfunction/numbness – but those seemed like a small price to pay for the benefits I felt the drug was providing.  I also became somewhat disinhibited, slept a lot more, and developed a voracious appetite.  I gained about 40 lbs in the first 6 months on the drug, but I had always been a skinny guy so I didn’t mind.

 

I stayed on the 20 mg dose of Paxil for a few years, but started to get bothered by the lethargy, weight gain, and sexual dysfunction.  I dropped to 10 mg without any issues, and that dosage reduction alleviated those side effects to a certain extent.  During these years I met my wife, found a good stable job, and bought a house.  I was mostly content, but at the same time everything was always somewhat muted.  I rarely ever felt too down, but also never really experienced deep feelings of things like anticipation, excitement, joy, passion and empathy the way I used to.  I almost never cried while I was on Paxil.  When I was younger, I always thought I wanted children.  While on Paxil, that desire completely disappeared.  Looking back, I don’t think I realized what a profound effect the drug had on me while I was taking it.  I think that’s part of what the drug does – it blinds a person to how much it’s changed you.  This aligns with the theory of “medication spellbinding” proposed by Dr. Peter Breggin.

 

This emotional blunting seemed to insidiously grow little by little each year I was on the drug, until by my mid-30’s I started to realize that most of my hobbies, interests, passions, and desire for social activity had gone by the wayside.  I worked full-time and forced myself to exercise a few times a week, but mostly I looked forward to eating, sleeping, and watching television.  I was also noticing signs of slow deterioration in my body and brain.  My short term memory was getting unreliable.  My vision and coordination seemed off.  I was getting frequent headaches, along with unusual stiffness and pain in my neck, shoulders, and back.  The years of jaw clenching triggered by Paxil was resulting in TMJ type issues.  I often felt fatigued, and slept a lot.  I also had some periods of bad breakthrough anxiety, so I'm not even sure it was helping much with that anymore. It seemed the drug was pooping out on me, and the drawbacks were starting to outweigh the benefits. I had also come across some articles that linked Paxil to dementia, which was very troubling to me.

 

In November of 2019 I approached my doctor with these concerns.  He recommended a switch to Prozac (fluoxetine), which he said was a more “activating” antidepressant.  He told me to stop taking Paxil, wait 3 days, then start taking the Prozac.  Knowing what I know now, this was negligent and reckless advice.  I had been on Paxil for over a dozen years and Paxil has a short half-life, whereas Prozac takes a long time to build up in your system.  Any responsible physician should be able to realize this was a recipe for disaster.

 

I followed the instructions I was given.  After about 3 days I felt tired and irritable.  On the 7th day into the cold switch, the bottom fell out.  It happened very suddenly.  I felt an almost indescribable change occur in my brain, and I’ve never been anywhere close to the same since then.  I was overcome by a chemical terror.  I could barely eat and got bad diarrhea.  I had significant confusion and was in a 24/7 state of DP/DR.  I was unable to sleep.  No matter how tired I was, when I would start to drift off my body would jolt itself awake.

 

I scheduled an appointment with a different physician (my primary doctor wasn’t available).  He was dismissive and said I probably needed to increase the dose of Prozac.  This made things worse, so a few days later I scheduled a visit with yet another physician.  This one was more understanding, and advised that I go back onto the Paxil right away at a slightly higher dose than what I had been on.  So, about two weeks after my last dose of Paxil, I reinstated at 15 mg.  I was hoping I would go back to normal in short order, but that’s not what happened.  It took several weeks before I got any type of symptom relief, and even when I did it was only partial relief.  My brain felt like it had been totally fried.

 

I carried on with the reinstatement for a few more months without noticing any more improvement.  It was (and still is) like being trapped in a nightmare that you can’t escape from.  None of it made any sense and I had no idea what was happening to me.  Nobody could tell me what was wrong other than saying it was just my anxiety.  But I knew that wasn’t the case.  This is not how any natural anxiety feels.  I didn’t even know it was possible for a human being to feel this way.  It felt like I had suffered a severe chemical injury to my brain and nervous system, but then why was every doctor saying that wasn’t possible?  Why did every mainstream web article say antidepressant withdrawal was mild, self-limiting, and only lasted a couple weeks?  My experience was not matching up with this.  Why had I never heard of this happening to anyone else when millions of people take these drugs?  Why was this seemingly only happening to me?  I felt like I was in the Twilight Zone, living in an alternate reality than everyone else.

 

Eventually I determined that Paxil simply wasn’t working for me any more, and in fact might be harming me.  So I decided to try “tapering” off this time, in hopes that the results would be different than the previous cold switch attempt.  The advice I found on conventional medical websites indicated an SSRI taper could be done over the span of a few weeks.  So I reduced the dosage each week over the span of one month – 10 mg for a week, then 7.5 mg, then 5 mg, then 2.5 mg before stopping.  Since I was already in pretty severe protracted withdrawal, I actually didn’t notice many changes (positive or negative) during this short taper period.

 

With the medication now out of my system, I was hoping I would start seeing some improvements in my condition, but that didn’t happen.  After 8 weeks off all meds, I went to yet another doctor.  This one prescribed Cymbalta (duloxetine).  I took 2 doses and had a horrible reaction.  I wasn’t able to sleep at all both nights so I stopped taking it immediately.  I was then prescribed Lexapro (escitalopram) which I was forced myself to stick with for around 10 days before having to stop that drug as well.  Not knowing what else to do, I decided to try reinstating Paxil one last time in hopes I could somehow stabilize.  I started at 5 mg for several weeks, but didn’t notice any improvement, so I upped the dose to 10 mg.  At this point I developed akathisia.  I could not sit still and it felt like I was being tortured.  I went four consecutive nights without sleeping.  I would lay in bed all night, wide awake in terror, and as soon as the sun would come up I’d go outside and walk around the neighborhood attempting to suppress the agonizing sensations in my body.  I couldn’t eat anything.  I lost about 20 lbs in the span of a few weeks.

 

So back to the doctor I went.  I had my wife come with me this time, to vouch for how abnormal all of this was for me.  Merely months prior, I had been a normal, functional, stable person.  Only after all of their drug switches/experimentation had I fallen into such a horrific state.  Surely they’d now be able to realize that I had clearly been harmed by the drugs, and then they’d be able to offer some solution.  Wrong.  I was instead told that what had occurred was actually an unmasking of bipolar disorder.  They tried to prescribe me the antipsychotic Seroquel (quetiapine) and referred me to a psychiatrist.  I declined these options, and finally realized I was completely on my own.  The medical safety net I’d always counted on was nothing but an illusion.

 

At that point, I decided I had no options but to quit all medications and let the chips fall where they may.  It was also around this time that I found Surviving Antidepressants and other similar websites, and began to finally piece together what had happened to me.  While it was nice to finally have some answers and realize that I wasn’t alone, a lot of what I saw was terrifying.  Countless stories of people who had been suffering for years.  Some for a decade or even longer.  Not many stories of recovery.

 

Shortly after stopping Paxil for the final time in August of 2020, the intensity of the akathisia diminished somewhat, although strong remnants of the feeling still persist to this day.  My appetite also returned, and I was able to start getting some sleep again, although it remains broken and un-restorative.

 

About 3 months after stopping all medications, I suddenly developed severe urinary problems.  One afternoon I went to the bathroom, just like I had thousands of times before.  But this time when I finished it still felt like I needed to go.  This quickly turned into a strong urge to urinate 24 hours a day, pain in my pelvic area and urethra, and difficulty fully emptying my bladder.  I went to urologists and tried overactive bladder medications which did not help.  Physical therapy did not help much either.  At its worst, this condition was so horrible that I thought I would have no choice but to take my own life to escape the horrible sensations.  It was on par with akathisia in terms of how unbearable it was.  The worst of this issue lasted around 6 months before it settled down a bit to a more tolerable level and I started learning how to live with it.  However, my urinary functioning never returned anywhere close to normal.  It remains a very distressing and painful issue, and contributes a lot to my inability to get quality sleep.

 

Below is a list of the other chronic symptoms I developed since this living nightmare started.  Some of them improved shortly after ceasing all medications, but many of them have not improved much if at all.

 

• Severe Headaches
• Head & Eye Pressure
• Dizziness / Perceptual Distortions
• Vision Problems / Dry Eyes
• Sensitivity to Light & Sound
• Fear / Panic / Anxiety
• Akathisia / Inner Restlessness
• Intolerance to Stress / Overstimulation
• Depression / Anhedonia
• Suicidal Urges / Desire to Die
• Insomnia / Poor Sleep Quality
• Drowsiness / Fatigue
• Depersonalization / Derealization
• Cognitive Impairment / Memory Problems
• Ringing Tinnitus
• Jaw Tension / Pain
• Neck & Shoulder Tension / Pain
• Back Pain
• Tailbone Pain
• Body Aches / Muscle Burning
• Tingling / Numbness / Paresthesia
• Temperature Regulation Issues
• Frequent Urination / Nocturia
• Bladder & Pelvic Pain

 

I’ve been to many primary care doctors, urologists, physical therapists, chiropractors, acupuncturists, and eventually a neurologist.  I’ve had many tests done, all of which revealed nothing.  The neurologist visit was the most disappointing of all.  I think based on the notes from my previous doctors, she had already predetermined it was all in my head before the appointment even began.  I outlined my symptoms and when she pressed me to explain when they started and what I think might have caused them, she became dismissive and antagonistic. She said the drugs don't cause any lasting dysfunction, and emphatically defended the cold switch recommended by my doctor as “medically acceptable.”  Protecting the status quo and defending their profession from any criticism or liability seems to be of far more importance to most doctors than the actual well-being of patients.  At my urging, she agreed to order an MRI of my head and neck which didn’t show anything abnormal.  When I mentioned how my debilitating symptoms often made work very challenging, she condescendingly stated, “You need to keep working. I don’t care if you have to take a job on the graveyard shift.”  Her parting advice to me was to exercise harder (“work out until you drop if that's what it takes” were her exact words).  I couldn’t believe this was all that a neurologist was able to offer me.

 

I consider myself fortunate to have my wife and family by my side throughout this horrific ordeal.  My wife has been amazing and has stood by me without wavering.  My family has been supportive and understanding as well.  It took a bit for all of them to come around to the idea that I had been harmed by a prescription drug, and that it was not just a psychological issue as the doctors were claiming.  But having known me before all of this and seeing the bizarre constellation of symptoms, they now seem to understand and accept that the drugs caused some type of injury to my nervous system.  While nobody could ever truly understand what it’s like to suffer this type of iatrogenic damage, it is still comforting to be believed by the people you care about.  I know not everyone is so lucky.

 

I have somehow been able to stay employed throughout all of this.  The COVID pandemic gave me a lot of cover to hide my illness, since I was able to work from home and avoid most social interactions for a while.  I’m now back in the office two days per week which is a challenge, but it can also serve as a distraction and I have been able to white knuckle through it most days.  Many things that used to be simple and easy (driving, going to the grocery store, social gatherings, traveling anywhere, following step-by-step instructions, physical exertion, etc.) remain very difficult and I can only do things for short periods of time before I need rest.  I still try to force myself to do these things when I’m able to.  I don’t really get any joy or satisfaction from them, but I try anyway so that I can spend time with my wife and because it might be beneficial to me in some way I don’t yet realize.  For the same reason, I also try to walk each day and do light exercise a few times per week.

 

Every day for me is a battle of enduring substantial physical pain and mental suffering before a brief respite of restless sleep. The mornings start with a cortisol-type early awakening, mixed with what feels like a terrible hangover. It feels as though I have been in a car wreck and drugged with both sedatives and stimulants at the same time.  I have persistent head and neck pain that is not resolved by any type of treatment.  I often wonder if the drugs really could have caused all of this, or if I have developed some other unrecognized chronic illness.  I never fathomed torture this surreal and relentless was even possible as part of the human experience.

 

Within the community of people who have been harmed by psychiatric drugs, the mantra is that we will all heal.  In the early going I tried to have faith in that sentiment, even though I intuitively felt like I had suffered irreversible neurological damage.  I had always planned to wait until I was feeling much better to share my story.  I told myself when I recovered, I’d dedicate myself to spreading hope and helping other people get through this.  Unfortunately, I no longer believe I’m going to heal or recover in any meaningful way.  I haven’t noticed any significant healing trajectory in myself over the 3 years that I’ve been off the meds.  I more or less feel the same as I felt 12 months ago, 18 months ago, etc.  I’ve also seen far too many testimonies of people who suffer indefinitely for years and years, and by comparison there are not many stories of complete recovery.

 

My biggest regret is ever touching a psychiatric drug.  My second biggest regret is following my doctor's instructions to abruptly stop.  These seemingly innocuous decisions ruined my life.  So many of us in this situation always tried to make smart and responsible decisions with our lives.  We stayed away from dangerous and risky things like hard recreational drugs.  It's such a cruel irony to then be damaged by a doctor-prescribed medication that we were told was safe and beneficial to our health.  In my opinion, it is a fate worse than death.  I feel as though the unique thing that makes us human is already dead and gone in me.

 

It seems many of us in this situation are just extremely unlucky individuals.  For whatever reason, our bodies had a strange (and relatively rare) neurotoxic response to starting or stopping these drugs, and it left many of us disabled with little to no quality of life.  I wish I had been properly warned of these risks by my doctor.  Had I received informed consent, I never would have chosen to take these drugs.

 

I would like to make a special point of thanking all of the volunteers who help run this support forum and others like it.  It’s very unfortunate that many of us don’t find this critical information until it’s too late and the damage has been done.  If anything changes for me, I will make sure to provide updates.  Please know that everyone affected by this horrific affliction is always in my thoughts, and I wish all of us the best.

[Go2zero]

Hi @FallingMan,

 

A warm welcome to this website. I am deeply touched by your story. I recognise a lot what you have written.

 

It is terrible that most doctors still do not know how dangerous these drugs can be. And that they most often do not more than a placebo... Except for the bad things these meds do....

 

You did what lots of members (including me) have done. Changing meds, stopping too fast, going up and down in dosage. All because our doctors told us so. And we trusted them.... Most doctors have no idea about the difficulties and dangers of stopping these meds. If we develop symptoms after stopping, they most often say that we need the drugs and often more of them. 

 

Thank you for sharing your story here. I hope you will get better. Do not give up hope. Nine years ago I was completely in hell because of withdrawal problems. I am so much better now, and still slowly improving. Though with ups and downs (which sometimes last for many months).

 

There is Hope! But you need to keep believing in it!

 

I am glad to read how supportive your wife and family is. I am also that lucky since I met my wife 8 years ago. It is so important not to be alone with this experience and that we are taken serious!

 

Here also we take you serious. It can be very rewarding to contact other members here and to support each other.

 

Thanks for being here! 🙏

[Peter23]

Hi FallingMan I'm really sorry to hear what you're going through since stopping your antidepressants. I really do empathise with you as I am experiencing many of the symptoms you listed since stopping two antidepressants in 2021. Unfortunately I was misdiagnosed several times and have ended with not only protracted antidepressant withdrawal but also have ended up poly drugged as well. I'm just trying to live one day at a time which isn't always easy due to anxiety. Also reading Dr Claire Weekes book called Hope and Help for your Nerves which I am finding helpful for anxiety. Please remember that you're not alone. There are thousands of people going through what we are experiencing. You are in my thoughts tonight. I really do hope that you will gradually improve. With Best Wishes Peter 

 

[Catina7]

Dear @FallingMan, many here can relate to what you've been through.  I'm glad you know that you're not alone.  Please don't give up hope that things can improve.  You have been through somewhat of a traumatic brain injury, but even with TBIs the brain is able to heal and regenerate over time.  Your brain just has to re-learn to make the proper connections that it had before and then the body will follow. 

 

The greatest healer is TIME, and I am confident that you will make some sort of improvement down the road.  There are success stories out there:  https://www.survivingantidepressants.org/forum/28-success-stories-recovery-from-psychiatric-drug-withdrawal/

 

We hope that you have found some comfort from being here and sharing your story.  Please keep us updated on how you're doing.  ❤️

[checco]

Your story is similar to mine in many ways, I too had extreme faith in doctors and in treatments but now I understand that these drugs only make the situation worse. I have taken many kinds of Psychopharmaceuticals at least sexually few problems, I was prescribed mirtazapine because I was told it didn't cause erectile dysfunction and now I'm almost impotent, this shows how much doctors are psychiatrists know what they prescribe. I hope things continue to improve for you so much admiration for you for being able to work.

[Peter23]

How are you? Has there been any improvements in your symptoms?

Best wishes Peter 

[renee2023]

On 8/25/2023 at 1:57 PM, FallingMan said:

Hi everyone,

 

I have been following this website and forum for several years, and would now like to share my story because I think it’s important to get the information out about what these drugs can do to people.  I am a 41-year-old male, and I have now been off all medications for over 36 months.  Unfortunately, I have not experienced much in the way of healing or recovery from whatever these drugs did to my brain and nervous system.  Please be forewarned, I’m sharing a lot of details about my experience, so it’s a long post.

 

My experience with psychiatric drugs began in 2007 at the age of 25.  I had recently graduated college and was having some difficulty with my career path.  I ended up accepting a job that was going to be very demanding with long hours, which caused me to start feeling very overwhelmed and anxious.  I was having trouble sleeping and felt a need to escape from the situation I was in, but also felt I didn’t have any options because I needed the income.

 

In retrospect, I should have realized that demanding, high stress jobs are simply not a good fit for certain people – including me.  Admittedly, I have always been somebody who was prone to anxiety, overthinking, and sometimes low mood.  Generally, these issues would be relatively situational and transient in nature, and would resolve on their own in time.  I believe now that had I simply walked away from that job and looked for something else, in time things would have resolved and returned to normal as they always had before.  I wish I had sought counseling to better learn how to deal with my anxious thoughts, and I wish somebody would have reassured me that anxiety can be a normal response to stress and that there was nothing inherently wrong with me.

 

Instead, I questioned why I wasn’t able to deal with the stress and demands of such a job.  Other people are able to, so there must be something fundamentally wrong with me, right?  Maybe something like… a chemical imbalance.  By that time, I think the pharmaceutical industry’s “chemical imbalance” marketing campaign had really taken hold in our culture.  It definitely must have planted a seed in my mind.  I remember thinking back to the old Zoloft television commercial with the sad little blob who had a chemical imbalance, and coming to the conclusion that must be what I had.  The direct-to-consumer pharmaceutical advertising in the United States is insidiously effective in the way it permeates our society to believe we are broken in ways that only their drugs can fix.

 

I ended up going to my doctor where I filled out a short questionnaire about how I had been feeling for the past two weeks, and was diagnosed with Generalized Anxiety Disorder and Depression.  I was prescribed Celexa (citalopram). I was also given Xanax to take for the first couple weeks as my body “adjusted” to the citalopram.  Part of me felt relieved and legitimized that I had a medical diagnosis for what I was experiencing.  Another part of me felt like this label now defined me and meant I was defective and wouldn’t really be able to live a normal or fulfilling life.

 

I felt somewhat uneasy about taking a daily pill that changes the way your brain works, but naively believed that the medical community had a full understanding of the inner workings of the brain and nervous system, and that there was no way my doctor would give me anything that wasn’t safe.  I reasoned if it didn’t work or caused bothersome side effects, I could just stop taking it.  I remember looking up patient reviews of SSRI medications.  They were generally positive, with people saying the drugs helped them.  Mixed in were also some unsettling reviews where people mentioned things like significant withdrawal symptoms and sexual side effects that didn’t resolve. Again, my trust in the medical system won out as I simply could not believe a drug that was capable of doing those things would be allowed onto the market.

 

So I started taking the drugs.  I believe I took them for a couple of weeks, but didn’t like the strange way they made me feel. I didn’t feel like myself.  So I stopped taking the drugs, but things didn't improve.  I experienced the first panic attack of my life while I was driving down the highway.  I started having issues with extreme anxiety, insomnia, dizziness, and DP/DR.  These things felt very different from any anxiety related issues I had ever experienced, but I was unaware of adverse reactions and withdrawal, so I attributed my symptoms to a worsening of my anxiety condition.

 

I went back to my doctor and was prescribed 20 mg Paxil (paroxetine).  Within a few weeks, I felt significant relief from many of my symptoms.  In some ways, I felt better than I ever had.  I felt almost a calm euphoria, and certain things like my self-consciousness seemed to almost disappear.  During this honeymoon phase, I truly felt I’d found my miracle drug.  There were also some negative side effects like emotional blunting, jaw clenching, and mild sexual dysfunction/numbness – but those seemed like a small price to pay for the benefits I felt the drug was providing.  I also became somewhat disinhibited, slept a lot more, and developed a voracious appetite.  I gained about 40 lbs in the first 6 months on the drug, but I had always been a skinny guy so I didn’t mind.

 

I stayed on the 20 mg dose of Paxil for a few years, but started to get bothered by the lethargy, weight gain, and sexual dysfunction.  I dropped to 10 mg without any issues, and that dosage reduction alleviated those side effects to a certain extent.  During these years I met my wife, found a good stable job, and bought a house.  I was mostly content, but at the same time everything was always somewhat muted.  I rarely ever felt too down, but also never really experienced deep feelings of things like anticipation, excitement, joy, passion and empathy the way I used to.  I almost never cried while I was on Paxil.  When I was younger, I always thought I wanted children.  While on Paxil, that desire completely disappeared.  Looking back, I don’t think I realized what a profound effect the drug had on me while I was taking it.  I think that’s part of what the drug does – it blinds a person to how much it’s changed you.  This aligns with the theory of “medication spellbinding” proposed by Dr. Peter Breggin.

 

This emotional blunting seemed to insidiously grow little by little each year I was on the drug, until by my mid-30’s I started to realize that most of my hobbies, interests, passions, and desire for social activity had gone by the wayside.  I worked full-time and forced myself to exercise a few times a week, but mostly I looked forward to eating, sleeping, and watching television.  I was also noticing signs of slow deterioration in my body and brain.  My short term memory was getting unreliable.  My vision and coordination seemed off.  I was getting frequent headaches, along with unusual stiffness and pain in my neck, shoulders, and back.  The years of jaw clenching triggered by Paxil was resulting in TMJ type issues.  I often felt fatigued, and slept a lot.  I also had some periods of bad breakthrough anxiety, so I'm not even sure it was helping much with that anymore. It seemed the drug was pooping out on me, and the drawbacks were starting to outweigh the benefits. I had also come across some articles that linked Paxil to dementia, which was very troubling to me.

 

In November of 2019 I approached my doctor with these concerns.  He recommended a switch to Prozac (fluoxetine), which he said was a more “activating” antidepressant.  He told me to stop taking Paxil, wait 3 days, then start taking the Prozac.  Knowing what I know now, this was negligent and reckless advice.  I had been on Paxil for over a dozen years and Paxil has a short half-life, whereas Prozac takes a long time to build up in your system.  Any responsible physician should be able to realize this was a recipe for disaster.

 

I followed the instructions I was given.  After about 3 days I felt tired and irritable.  On the 7th day into the cold switch, the bottom fell out.  It happened very suddenly.  I felt an almost indescribable change occur in my brain, and I’ve never been anywhere close to the same since then.  I was overcome by a chemical terror.  I could barely eat and got bad diarrhea.  I had significant confusion and was in a 24/7 state of DP/DR.  I was unable to sleep.  No matter how tired I was, when I would start to drift off my body would jolt itself awake.

 

I scheduled an appointment with a different physician (my primary doctor wasn’t available).  He was dismissive and said I probably needed to increase the dose of Prozac.  This made things worse, so a few days later I scheduled a visit with yet another physician.  This one was more understanding, and advised that I go back onto the Paxil right away at a slightly higher dose than what I had been on.  So, about two weeks after my last dose of Paxil, I reinstated at 15 mg.  I was hoping I would go back to normal in short order, but that’s not what happened.  It took several weeks before I got any type of symptom relief, and even when I did it was only partial relief.  My brain felt like it had been totally fried.

 

I carried on with the reinstatement for a few more months without noticing any more improvement.  It was (and still is) like being trapped in a nightmare that you can’t escape from.  None of it made any sense and I had no idea what was happening to me.  Nobody could tell me what was wrong other than saying it was just my anxiety.  But I knew that wasn’t the case.  This is not how any natural anxiety feels.  I didn’t even know it was possible for a human being to feel this way.  It felt like I had suffered a severe chemical injury to my brain and nervous system, but then why was every doctor saying that wasn’t possible?  Why did every mainstream web article say antidepressant withdrawal was mild, self-limiting, and only lasted a couple weeks?  My experience was not matching up with this.  Why had I never heard of this happening to anyone else when millions of people take these drugs?  Why was this seemingly only happening to me?  I felt like I was in the Twilight Zone, living in an alternate reality than everyone else.

 

Eventually I determined that Paxil simply wasn’t working for me any more, and in fact might be harming me.  So I decided to try “tapering” off this time, in hopes that the results would be different than the previous cold switch attempt.  The advice I found on conventional medical websites indicated an SSRI taper could be done over the span of a few weeks.  So I reduced the dosage each week over the span of one month – 10 mg for a week, then 7.5 mg, then 5 mg, then 2.5 mg before stopping.  Since I was already in pretty severe protracted withdrawal, I actually didn’t notice many changes (positive or negative) during this short taper period.

 

With the medication now out of my system, I was hoping I would start seeing some improvements in my condition, but that didn’t happen.  After 8 weeks off all meds, I went to yet another doctor.  This one prescribed Cymbalta (duloxetine).  I took 2 doses and had a horrible reaction.  I wasn’t able to sleep at all both nights so I stopped taking it immediately.  I was then prescribed Lexapro (escitalopram) which I was forced myself to stick with for around 10 days before having to stop that drug as well.  Not knowing what else to do, I decided to try reinstating Paxil one last time in hopes I could somehow stabilize.  I started at 5 mg for several weeks, but didn’t notice any improvement, so I upped the dose to 10 mg.  At this point I developed akathisia.  I could not sit still and it felt like I was being tortured.  I went four consecutive nights without sleeping.  I would lay in bed all night, wide awake in terror, and as soon as the sun would come up I’d go outside and walk around the neighborhood attempting to suppress the agonizing sensations in my body.  I couldn’t eat anything.  I lost about 20 lbs in the span of a few weeks.

 

So back to the doctor I went.  I had my wife come with me this time, to vouch for how abnormal all of this was for me.  Merely months prior, I had been a normal, functional, stable person.  Only after all of their drug switches/experimentation had I fallen into such a horrific state.  Surely they’d now be able to realize that I had clearly been harmed by the drugs, and then they’d be able to offer some solution.  Wrong.  I was instead told that what had occurred was actually an unmasking of bipolar disorder.  They tried to prescribe me the antipsychotic Seroquel (quetiapine) and referred me to a psychiatrist.  I declined these options, and finally realized I was completely on my own.  The medical safety net I’d always counted on was nothing but an illusion.

 

At that point, I decided I had no options but to quit all medications and let the chips fall where they may.  It was also around this time that I found Surviving Antidepressants and other similar websites, and began to finally piece together what had happened to me.  While it was nice to finally have some answers and realize that I wasn’t alone, a lot of what I saw was terrifying.  Countless stories of people who had been suffering for years.  Some for a decade or even longer.  Not many stories of recovery.

 

Shortly after stopping Paxil for the final time in August of 2020, the intensity of the akathisia diminished somewhat, although strong remnants of the feeling still persist to this day.  My appetite also returned, and I was able to start getting some sleep again, although it remains broken and un-restorative.

 

About 3 months after stopping all medications, I suddenly developed severe urinary problems.  One afternoon I went to the bathroom, just like I had thousands of times before.  But this time when I finished it still felt like I needed to go.  This quickly turned into a strong urge to urinate 24 hours a day, pain in my pelvic area and urethra, and difficulty fully emptying my bladder.  I went to urologists and tried overactive bladder medications which did not help.  Physical therapy did not help much either.  At its worst, this condition was so horrible that I thought I would have no choice but to take my own life to escape the horrible sensations.  It was on par with akathisia in terms of how unbearable it was.  The worst of this issue lasted around 6 months before it settled down a bit to a more tolerable level and I started learning how to live with it.  However, my urinary functioning never returned anywhere close to normal.  It remains a very distressing and painful issue, and contributes a lot to my inability to get quality sleep.

 

Below is a list of the other chronic symptoms I developed since this living nightmare started.  Some of them improved shortly after ceasing all medications, but many of them have not improved much if at all.

 

• Severe Headaches
• Head & Eye Pressure
• Dizziness / Perceptual Distortions
• Vision Problems / Dry Eyes
• Sensitivity to Light & Sound
• Fear / Panic / Anxiety
• Akathisia / Inner Restlessness
• Intolerance to Stress / Overstimulation
• Depression / Anhedonia
• Suicidal Urges / Desire to Die
• Insomnia / Poor Sleep Quality
• Drowsiness / Fatigue
• Depersonalization / Derealization
• Cognitive Impairment / Memory Problems
• Ringing Tinnitus
• Jaw Tension / Pain
• Neck & Shoulder Tension / Pain
• Back Pain
• Tailbone Pain
• Body Aches / Muscle Burning
• Tingling / Numbness / Paresthesia
• Temperature Regulation Issues
• Frequent Urination / Nocturia
• Bladder & Pelvic Pain

 

I’ve been to many primary care doctors, urologists, physical therapists, chiropractors, acupuncturists, and eventually a neurologist.  I’ve had many tests done, all of which revealed nothing.  The neurologist visit was the most disappointing of all.  I think based on the notes from my previous doctors, she had already predetermined it was all in my head before the appointment even began.  I outlined my symptoms and when she pressed me to explain when they started and what I think might have caused them, she became dismissive and antagonistic. She said the drugs don't cause any lasting dysfunction, and emphatically defended the cold switch recommended by my doctor as “medically acceptable.”  Protecting the status quo and defending their profession from any criticism or liability seems to be of far more importance to most doctors than the actual well-being of patients.  At my urging, she agreed to order an MRI of my head and neck which didn’t show anything abnormal.  When I mentioned how my debilitating symptoms often made work very challenging, she condescendingly stated, “You need to keep working. I don’t care if you have to take a job on the graveyard shift.”  Her parting advice to me was to exercise harder (“work out until you drop if that's what it takes” were her exact words).  I couldn’t believe this was all that a neurologist was able to offer me.

 

I consider myself fortunate to have my wife and family by my side throughout this horrific ordeal.  My wife has been amazing and has stood by me without wavering.  My family has been supportive and understanding as well.  It took a bit for all of them to come around to the idea that I had been harmed by a prescription drug, and that it was not just a psychological issue as the doctors were claiming.  But having known me before all of this and seeing the bizarre constellation of symptoms, they now seem to understand and accept that the drugs caused some type of injury to my nervous system.  While nobody could ever truly understand what it’s like to suffer this type of iatrogenic damage, it is still comforting to be believed by the people you care about.  I know not everyone is so lucky.

 

I have somehow been able to stay employed throughout all of this.  The COVID pandemic gave me a lot of cover to hide my illness, since I was able to work from home and avoid most social interactions for a while.  I’m now back in the office two days per week which is a challenge, but it can also serve as a distraction and I have been able to white knuckle through it most days.  Many things that used to be simple and easy (driving, going to the grocery store, social gatherings, traveling anywhere, following step-by-step instructions, physical exertion, etc.) remain very difficult and I can only do things for short periods of time before I need rest.  I still try to force myself to do these things when I’m able to.  I don’t really get any joy or satisfaction from them, but I try anyway so that I can spend time with my wife and because it might be beneficial to me in some way I don’t yet realize.  For the same reason, I also try to walk each day and do light exercise a few times per week.

 

Every day for me is a battle of enduring substantial physical pain and mental suffering before a brief respite of restless sleep. The mornings start with a cortisol-type early awakening, mixed with what feels like a terrible hangover. It feels as though I have been in a car wreck and drugged with both sedatives and stimulants at the same time.  I have persistent head and neck pain that is not resolved by any type of treatment.  I often wonder if the drugs really could have caused all of this, or if I have developed some other unrecognized chronic illness.  I never fathomed torture this surreal and relentless was even possible as part of the human experience.

 

Within the community of people who have been harmed by psychiatric drugs, the mantra is that we will all heal.  In the early going I tried to have faith in that sentiment, even though I intuitively felt like I had suffered irreversible neurological damage.  I had always planned to wait until I was feeling much better to share my story.  I told myself when I recovered, I’d dedicate myself to spreading hope and helping other people get through this.  Unfortunately, I no longer believe I’m going to heal or recover in any meaningful way.  I haven’t noticed any significant healing trajectory in myself over the 3 years that I’ve been off the meds.  I more or less feel the same as I felt 12 months ago, 18 months ago, etc.  I’ve also seen far too many testimonies of people who suffer indefinitely for years and years, and by comparison there are not many stories of complete recovery.

 

My biggest regret is ever touching a psychiatric drug.  My second biggest regret is following my doctor's instructions to abruptly stop.  These seemingly innocuous decisions ruined my life.  So many of us in this situation always tried to make smart and responsible decisions with our lives.  We stayed away from dangerous and risky things like hard recreational drugs.  It's such a cruel irony to then be damaged by a doctor-prescribed medication that we were told was safe and beneficial to our health.  In my opinion, it is a fate worse than death.  I feel as though the unique thing that makes us human is already dead and gone in me.

 

It seems many of us in this situation are just extremely unlucky individuals.  For whatever reason, our bodies had a strange (and relatively rare) neurotoxic response to starting or stopping these drugs, and it left many of us disabled with little to no quality of life.  I wish I had been properly warned of these risks by my doctor.  Had I received informed consent, I never would have chosen to take these drugs.

 

I would like to make a special point of thanking all of the volunteers who help run this support forum and others like it.  It’s very unfortunate that many of us don’t find this critical information until it’s too late and the damage has been done.  If anything changes for me, I will make sure to provide updates.  Please know that everyone affected by this horrific affliction is always in my thoughts, and I wish all of us the best.

I just recently joined this group! Not certain if I am replying correctly to the post. I could relate to this as if I were writing it myself. I was on Paxil for 15 years the first time on it,  and taking 80mg which is higher than they normally prescribe last I knew. I got off in 2012 the first time, and went through you know what when they were trying to switch me on all different meds. This is when I really started relying on a benzodiazepine which was Clonazepam. Long story short I became so unwell I couldn’t hardly function. Went to all kinds of specialists and finally was diagnosed with Myalgic Encephalomyelitis, and Fibromyalgia. The only reason I got a diagnosis was because of a fluke on a test that gave me a false positive. When I asked the Dr what would cause a false positive she informed me the Epstein Barr Virus. For me the Epstein Barr Virus kept reactivating. I’ll stop right here as this is where most people figure we’ve all been exposed to Epstein Barr no big deal. In a-lot of people’s cases it is a huge deal. I’ve read countless stories of people suffering with no help from the medical community. It attacks the central nervous system. In 2015 I had a hysterectomy and they found me full of Endometriosis. This also attacks the central nervous system. Had I not had that false positive they’d most likely kept thinking it was all in my head. I definitely have ptsd from the medical gaslighting I have endured. To date I have multiple diagnosis that have been added. I won’t go into all of that. I did get back on Paxil in 2018 as I’d lost 40 lbs overnight after CT my clonazepam. I was desperate. To date I’m off clonazepam  since September 2022, and Paxil free since July 10th, 2023. It is my hopes that I get my life back. I’ve read multiple stories that SSRI’s and Benzos mimic illnesses. I thought I would find out first hand. 

[Peter23]

How are you doing? 

[Rezten]

Hi @FallingMan

 

Thank you for sharing this. Your story is similar to mine in a lot of ways and I'm glad you took the time to write it out.  I'm sorry for your long suffering.  I too have been going through this almost six years now.  I am better than I was when it first started, I couldn't get out of bed for the first year.  Things have gotten easier, but never go away and I still have a lot of difficult physical symptoms.

 

I have been told everyone heals, but I do not believe that to be true either.  I think most people do, but there are some who don't.   They may improve, but never get back to where they were. I believe I am one of those people.

 

I don't want to discourage you but it was refreshing to see someone say the quiet part out loud.  That there are some of us that don't recover completely.

 

I hope you have seen some improvement since this started.

 

 

[alex01]

Hello @FallingMan,

 

My story is very similar to yours.  I was prescribed Paxil and used it for 8 years, most of the time 40 mg.  At the beginning of 2020, I underwent fast tapering for less than 3 months due to wrong advice from my psychiatrist.  The first two years were hell on Earth, I no longer knew what purpose I was alive for.  I went to several psychiatrists and they all told me I was in relapse or gave me new diagnoses, no one mentioned protracted withdrawal.  It took me 2 years to understand, alone, the truth about what was happening to me and find SA.  Today, at almost 4 years, I have achieved improvements of 30 to 50% in some of the symptoms. Others haven't improved at all, zero, like an extreme sensitivity and irritability to sounds/noises that I best describe as misophonia, which I didn't have before, and of course it has a significant impact on my life.

 

 I have read the success stories on this site many times.  There are at least 10 success stories for the drug paxil alone, and they rarely happen in 3 years.  The majority between 5 and 12 years after the start of withdrawal.  So, keep your hope because your nervous system may need more time before you see more significant improvements.

 

 Are you using omega 3 and magnesium?

 

[Peter23]

How are you now? 

[FallingMan]

It has now been 42 months since I discontinued all drugs. There have not been any noticeable changes to my condition since my original post.  Every day is a blur of dizziness, headaches, vision problems, dystonic muscle stiffness, full body pain, cognitive dysfunction, anhedonia, and severe drowsiness/fatigue.

 

A few months ago I visited a second neurologist, in order to try and determine if there could be something else going on with my health.  I was hoping for somebody to take a deeper look and possibly perform some additional testing to rule out other conditions like an autoimmune disorder.  What I received instead was the standard 15-minute doctor experience.  I explained my symptoms while he looked at me with skepticism.  Eventually he said I must have fibromyalgia.  When I asked if the sudden onset of this "fibromyalgia" could have been related in any way to long-term use (12 years) and abrupt discontinuation of Paxil, he said no.  He then wrote a prescription for gabapentin and nortriptyline.  I told him I'm not comfortable taking those, particularly nortriptyline since I am now unable to tolerate serotonergic drugs.  He said a lot of people think they're sensitive to medication but that's just a myth, and it's not possible that so many people could be drug-sensitive.

 

Just when I think I couldn't possibly be more disheartened with our medical system, they always seem to find a way to disappoint even more.  The broad denial of iatrogenic harm, along with the poor treatment for subsequent chronic conditions, is shameful.  I really can't wrap my head around how they all believe it's impossible that long-term use of a drug (which perturbs the functioning of neurotransmitters) could cause persistent changes to the way the brain and nervous system operate.  They readily admit that use of other substances like alcohol or illicit drugs can cause long-standing or permanent changes to the brain.  But apparently that same principle doesn't apply if the drugs are made by GlaxoSmithKline or Pfizer.

 

Anyway, I chose not to take any of the newly offered drugs.  I have acclimated to this new state-of-being to the best of my ability, and continue to try and survive one day at a time.  A small part of me still fantasizes that one day I will return to normal, but deep down it feels like it is nothing more than that... a fantasy.

[Rezten]

@FallingMan I am so sorry for your long suffering. I can relate to the fantasizing of one day recovering completely.  I have forgotten what "normal" feels like.

 

The medical establishment is so infuriating.  They continue to push all kinds of drugs, but refuse to acknowledge the damage they do.  A pill for an ill and then another pill for an ill the first pill caused.

 

 

[Catina7]

Hello @FallingMan, and thank you for the update.  A lot of people have been wanting to know how you've been doing.  

 

I'm so glad you had the wherewithal to refuse more drugs.  It is quite mind boggling how most of the medical establishment refuses to acknowledge the damage of the drugs they so readily prescribe.  Have you thought about seeing a functional medicine doctor?  Sometimes they can screen for things that a traditional doctor doesn't.  Most likely, though, your issues are not auto-immune related and are caused by the Paxil.

 

Never, ever lose that glimmer of hope that one day things will improve, because they just might!  Please keep hanging in there for the sake of the next person who will need your advice!

[ShadowDancer]

Saddened by reading this.

I'm in the same situation caused by different drugs.

Don't know if I'll ever get relief..

[Dahlia50]

Sad to hear. I'm afraid I'm in the same situation as you. Guess this won't go away as I have similar symptoms and severe injury. I will never be the same. Even now, I barely remember my old life.