Cassidyamerica: 2 years of severe+unending withdrawals, I have chronic health issues at 23 from taking SSRIs

[Cassidyamerica]

Background

Hi, my name is Cassidy and I am a 23 year old woman. I have been in college since 2020 and I work part time. I've lived on my own for 2 years. 

I was diagnosed with BPD and depression in middle school, went on to have severe anxiety, many suicide attempts, and many rehab stays. My parents took me to doctors and therapists (to no avail). 

Because of my diagnosis of BPD and how suicidal and miserable I was growing up, all anyone did was put me on medications!! They had horrible side effects on my body. The first medication I was on (Zoloft), caused severe constipation and bloated stomach for 2 years that I was on it, also weight gain and I struggled with an eating disorder ages 14-19 because I thought I was fat at that point (not knowing it was just a side effect and I am actually very small now that I am off meds, even slightly underweight). I was in 5 or 6 rehabs in high school. I tried lexipro, Cymbalta, lithium, Latuda, viibryd, vraylar, a few others, and finally Pristiq for most of 2023 and then Remeron for 3/4 weeks in January 2023. I had so many side effects from everything!! My body is extremely sensitive to medications! Why don't doctors care or acknowledge this? I have seen many psychiatrists, and I do not remember ever being warned about side effects or withdrawals, or much focus on tapering!! Just earlier this year, in March, I took depakote from a neurologist as a short-term migraine treatment, and the next day I had a seizure and woke up in the ambulance. It was terrible, and I was in the drivers seat of a car too! Other side effects I had as a teenager include inability to fall asleep, headaches, muscle pain, rashes, waking up very early in the morning every day, and weight gain. These side effects tormented me as a teenager, as I also very extremely insecure and had OCD, so anything being abnormal or out of my control was very distressing. But mostly the BPD tormented me all day every day, and though I tried so many medications, they did nothing for the Borderline but gave me physical side effects on top of the mental agony.

 

My Current Situation 

Throughout my life, I have struggled making and keeping friends because though I am a very likable nice kind person and people find me attractive, having severe mental illness, and the anxiety + constant depression/suicidal thoughts (which I would vocalize) would push everyone away.

So upon my first break up in November 2022, I was completely alone and miserable. Since early 2022 I had switched from lithium to pristiq, pristiq had the side effect of making me unable to fall asleep at night, they then put me on trazodone, which worked OK for a little while, but quickly started causing me headaches and pain. After a few months of trazodone, this escalated to full-blown migraines, and I would wake up in severe pain most days, sometimes even going to the hospital because it was so bad I couldn’t go to school!

So in 2022 I was not getting enough sleep, and I was in so much pain and I honestly didn’t know why this was all happening to me. I was just trying to be a student! First I stopped taking trazodone, and the headaches stopped immediately. Then I stopped taking Pristiq and suddenly could sleep again!  I was gonna be ok?!

But upon the breakup, I was so suicidal and miserable that my current doctor talked me into trying Remeron. I was hopeless and going to give up on everything, so after a few weeks of waiting to see if I would feel better I figured I would just try it. If it had side effects, I could stop taking it, just like I had done with every medication before. Right?!

…wrong.

I tried Remeron for literally three weeks in January 2023, and it was so sedating that I would sleep for 14 hours after taking it. After that trial period it was not helping my depression and I wanted to stop taking it. I didn’t have anyone giving me advice about tapering and I was only on 15mg, which didn’t seem like a lot to me. I cut the pills in half and tapered off in less than a week. By myself.

Upon doing this, I found I could no longer sleep without the Remeron. I did my own research and read about withdrawal syndrome, and I assumed it was happening to me. I figured I would tough it out and it would end in a few weeks. But it has not ended. it is now September of 2024, and I haven’t slept normally or enough in almost 2 years.

Last year in 2023 I was sleeping around 10 hours a week. I would not sleep for multiple days, sleep a few hours finally, and then go another few days without sleep. This has been horrible for me. Most nights since Remeron I have not slept at all. I’ve been psychotic and had severe panic attacks. I’ve hallucinated, been out of touch with reality, and driven my car like that. I’ve been hospitalized 20+ times. I attempted suicide twice last year solely because of not being able to sleep and how horrible it made me feel. It has been absolute torture. Reactivated my BPD and the episodes of that.

After the first few months of literally not sleeping in 2023, I then became severely depressed, was diagnosed with catatonic depression, and underwent electrical shock therapy in a local hospital. I lived in the hospital for a month, still not sleeping unless very medicated.

Even after finishing ECT I was not sleeping, though the severe depression was better. I do feel that the catatonic depression was a direct result of going so long without sleep, as my entire mind/body was compromised.

I managed to stay in school for spring 2023 semester and passed my classes with doctors notes, did ECT in summer, but last October I had to drop out of college because I had spent so much time in the mental hospital.

Nobody in the medical community has figured out what’s wrong with me or how to treat me. Last year, I was put on every insomnia medication under the sun, and they would either not work at all or work for a few days and then stop helping. In March I was finally diagnosed with thyroid problems, my thyroid seemed to be not working at all, according to the doctor running tests. I can only assume this was a side effect of the Remeron! I have been told recently I don’t have circadian rhythm and that my body is not producing the hormones needed for sleep. Pineal gland dysfunction? Who knows. All I know for sure is that the medications did this to me. Growing up I was a very physically healthy teenager and I used to be an athlete and play competitive sports. Now I am very sick and basically disabled. I will sleep 0-6 hours a night and I work and go to college like this. I also now have a chronic pain condition, last year I was on gabapentin for months for insomnia, which was actually helping me to sleep, but also started giving me daily headaches all over again. I stopped gabapentin and I tried ketamine treatment in January, which triggered a cycle of constant physical pain and muscle pain that has continued every day since then. I wake up in a lot of pain every day and I have a headache most of the time.

Nobody has any explanation. When I tell doctors that I know the medications messed up my body most of them don’t care or listen. But I know my body and I know that I wouldn’t have just randomly developed these issues. My severe sleep issue has not been taken seriously, and I have dealt with it alone.

Who relates?! I feel so taken advantage of and harmed by the medical community. I am so sad and so angry and so regretful that I trusted those idiot doctors to prescribe me meds. It is terrible having to be in a cycle of medications, then side effects- and more medications for those side effects, causing more side effects!!! 

As of now, I am currently working with a functional doctor doing an alternative treatment called the Amp Coil. This is my last hope and the last idea I have for a chance to live again.

Edited September 17 by Emonda
Name to title

[Catwoman73]

Hi @Cassidyamerica, and welcome to SA!  We are a community of volunteers providing peer support in the tapering of psychiatric medications, and their associated withdrawal syndromes. 

 

I am so very sorry for all you have been through.  It has been quite a journey, and I'm very glad you've found us.  

 

I know your doctors have not provided you with any validation that these drugs could be the cause of your current issues.  I can absolutely attest, with 100% certainty, that everything you describe is likely the result of your drug merry-go-round, and likely the ECT as well.  You absolutely have been harmed by the medical community.  We all have here.  The good news about this is that you WILL heal.  Everyone does.  The bad news is that, given your history, it is likely going to take time.  

 

I'm assuming that you were never properly tapered from any of these drugs, given your timelines.  Here at SA, we recommend tapering by no more than 10% of your CURRENT dose of all psych meds, no more often than every four weeks.  This is known as hyperbolic tapering.  You can read more about it in the following link.  Sadly, the vast majority of doctors know nothing about this, and tend to trade these drugs out with no tapering whatsoever, which over time, leads to serious nervous system instability and cascading withdrawal symptoms like you have described.  

 

Why taper by 10% of my dosage?

 

If you have a look at the following list of typical withdrawal symptoms, I suspect a lot of this will look familiar to you.  You have certainly come to the right place, as everyone here has experienced many of these at various points in our journey. 

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF)

 

Like I said above, you will heal.  Unfortunately, there are no magic bullets.  Time is the answer.  There are a few things that we know help with healing in general- most are fairly intuitive.  Stick with a whole foods, balanced diet, stay adequately hydrated, get as much rest as you can, and engage in gentle exercise.  Avoid neurologically active substances, such as caffeine, nicotine, alcohol and recreational drugs.  From what I am reading (correct me if I'm wrong), but it seems you are currently psych drug free?  Only doing the amp coil treatments?  I can't comment on amp coil, as I know very little about it, but what I will say is that it is best to avoid taking psychiatric drugs to deal with the withdrawal effects of psychiatric drugs.  As you have discovered already, when the nervous system is destabilized like yours currently is, the effects of psych meds are not predictable, and can make you worse rather than better.  Not to mention, taking other psych meds only puts you in a situation where you have yet another drug to taper from, thereby prolonging your withdrawal journey.  

 

Here at SA, we only recommend two supplements- magnesium, and omega-3 fatty acids.  Do be mindful though, it is common in withdrawal to become hypersensitive to all sorts of things, including medications, supplements, and even foods.  So if you do choose to try any supplements, even those we recommend, start at a very low dose, and see how you fare.  If you tolerate them well, you can increase the dosage slowly over time.  I am a prime example of this hypersensitivity- magnesium is supposed to help with anxiety and sleep, but for me, it causes brain zaps and insomnia!

 

You may be someone who would benefit from melatonin as well.  I will link our advice on melatonin below- do take note that more is NOT better when it comes to melatonin, and it can have a paradoxical effect.  Doses under 1mg are typically what we recommend here:

 

Melatonin for sleep

 

Insomnia is one of the absolute worst withdrawal symptoms that any of us deal with.  We do have a handful of threads on advice regarding sleep that I will link below. Do be mindful of basic sleep hygiene as well- no screens for two hours before bed, no caffeine after 2pm (preferably none at all in withdrawal!), reduced light in the evenings, calming activities only before bed.  I have found listening to nature sounds and/or yoga Nidra recordings at night to be rather helpful- there are some nights when I have them going all night long lol!  The most important thing I will say about sleep is that lack of it is not going to kill you or make you go 'crazy.'  Acknowledge how much it sucks, but don't get yourself stressed out or worked up over it, as that only makes things worse.

 

Tips to help sleep: so many of us have that awful withdrawal insomnia

 Path to Better Sleep FREE online for everyone from the US Veterans Administration

Music for self-care: calms hyperalertness, anxiety, aids relaxation and sleep

 

I know this can all be one heck of an emotional roller coaster ride, so it's important to learn some non-drug coping mechanisms to help you through the ups and downs of withdrawal (and all future stressors, for that matter).  We have lots of threads on coping with our emotional and cognitive symptoms- I will link some of them below.  Personally, I have found practicing mindfulness every minute of every day to be the absolute cornerstone in my ability to survive all of this.  That, and using my nature sounds and yoga Nidra for sleep.  I also use a lot of CBT techniques to get through the tough stuff- things like box breathing, challenging negative thoughts, etc are very helpful.  I also love to just distract myself, by engaging in activities that bring me joy- I love to swim (I feel normal in the water!), cook, and take on artistic projects.  All of these things help me keep putting one foot in front of the other on the bad days.

 

Non-drug techniques to cope with emotional symptoms

 Easing your way into meditation for a stressed-out nervous system

Ways to cope with daily anxiety

"Change the channel" - dealing with cognitive symptoms

Dealing With Emotional Spirals

The importance of recognizing you're feeling good

 

As time passes, and you proceed through the healing process, you will notice there are times when you feel like you are doing a bit better, and times when you feel significantly worse.  This is an absolutely normal part of the healing process that we call the windows and waves pattern of stabilization.  This pattern is an excellent sign that healing is occurring.  You would likely find it beneficial to start a symptom journal, tracking your symptoms on a day to day basis, rating them on a scale of 1-10.  This would help you identify your windows and waves.  Perhaps your windows right now are the nights when you are getting a few hours of sleep- this will improve with time.  You can also track activities, supplements and foods in a journal in order to help identify anything that triggers a worsening of your symptoms.  So far, I have managed to identify a few triggers of my own- coffee (even decaf), chamomile, intense exercise, magnesium and fried foods.  Withdrawal is much easier when you are able to avoid these triggers, but the first step is finding them!  A journal is the easiest way to do this.  You can use the above list of typical withdrawal symptoms as a template for a journal, if you wish.  Here's more info on windows and waves:

 

Windows and waves pattern of stabilization

 

Most of all, please do not give up hope!  Treat your body and brain well, and you will heal in time.  Yes, it is going to take a while, but we are all healing, all the time, whether it feels like it or not.  

 

Are We There Yet? How Long is Withdrawal Going to Take?

 "Is it always going to be like this?"

 

In summary, since it appears you are currently drug free, the best you can do for yourself is to give it time.  Take really good care of yourself- body and mind- to help facilitate healing.  Control what you can, and work on your non-drug coping mechanisms to cope with the rest.  Start a journal to help you identify your windows and waves, and any potential triggers that could be making you feel worse.  And keep believing in healing, because it WILL happen! ❤️‍🩹

 

This is your introduction topic- each member gets one intro topic.  Please post any updates or questions here, on this thread.  But do feel free to explore the rest of the forum- there's lots of good info here!  And if you're up to it, read the intro threads of other members, and drop a comment/word of support.  As you've discovered, this can be a very lonely journey.  But you are not alone!  By engaging with this forum, you can build a whole community of people who fully understand your pain and your suffering.  The peer support here is wonderful, and I do hope you take advantage of it!

 

I look forward to following your journey!  Sending healing vibes! 

[Cassidyamerica]

4 hours ago, Catwoman73 said:

Hi @Cassidyamerica, and welcome to SA!  We are a community of volunteers providing peer support in the tapering of psychiatric medications, and their associated withdrawal syndromes. 

 

I am so very sorry for all you have been through.  It has been quite a journey, and I'm very glad you've found us.  

 

I know your doctors have not provided you with any validation that these drugs could be the cause of your current issues.  I can absolutely attest, with 100% certainty, that everything you describe is likely the result of your drug merry-go-round, and likely the ECT as well.  You absolutely have been harmed by the medical community.  We all have here.  The good news about this is that you WILL heal.  Everyone does.  The bad news is that, given your history, it is likely going to take time.  

 

I'm assuming that you were never properly tapered from any of these drugs, given your timelines.  Here at SA, we recommend tapering by no more than 10% of your CURRENT dose of all psych meds, no more often than every four weeks.  This is known as hyperbolic tapering.  You can read more about it in the following link.  Sadly, the vast majority of doctors know nothing about this, and tend to trade these drugs out with no tapering whatsoever, which over time, leads to serious nervous system instability and cascading withdrawal symptoms like you have described.  

 

Why taper by 10% of my dosage?

 

If you have a look at the following list of typical withdrawal symptoms, I suspect a lot of this will look familiar to you.  You have certainly come to the right place, as everyone here has experienced many of these at various points in our journey. 

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF)

 

Like I said above, you will heal.  Unfortunately, there are no magic bullets.  Time is the answer.  There are a few things that we know help with healing in general- most are fairly intuitive.  Stick with a whole foods, balanced diet, stay adequately hydrated, get as much rest as you can, and engage in gentle exercise.  Avoid neurologically active substances, such as caffeine, nicotine, alcohol and recreational drugs.  From what I am reading (correct me if I'm wrong), but it seems you are currently psych drug free?  Only doing the amp coil treatments?  I can't comment on amp coil, as I know very little about it, but what I will say is that it is best to avoid taking psychiatric drugs to deal with the withdrawal effects of psychiatric drugs.  As you have discovered already, when the nervous system is destabilized like yours currently is, the effects of psych meds are not predictable, and can make you worse rather than better.  Not to mention, taking other psych meds only puts you in a situation where you have yet another drug to taper from, thereby prolonging your withdrawal journey.  

 

Here at SA, we only recommend two supplements- magnesium, and omega-3 fatty acids.  Do be mindful though, it is common in withdrawal to become hypersensitive to all sorts of things, including medications, supplements, and even foods.  So if you do choose to try any supplements, even those we recommend, start at a very low dose, and see how you fare.  If you tolerate them well, you can increase the dosage slowly over time.  I am a prime example of this hypersensitivity- magnesium is supposed to help with anxiety and sleep, but for me, it causes brain zaps and insomnia!

 

You may be someone who would benefit from melatonin as well.  I will link our advice on melatonin below- do take note that more is NOT better when it comes to melatonin, and it can have a paradoxical effect.  Doses under 1mg are typically what we recommend here:

 

Melatonin for sleep

 

Insomnia is one of the absolute worst withdrawal symptoms that any of us deal with.  We do have a handful of threads on advice regarding sleep that I will link below. Do be mindful of basic sleep hygiene as well- no screens for two hours before bed, no caffeine after 2pm (preferably none at all in withdrawal!), reduced light in the evenings, calming activities only before bed.  I have found listening to nature sounds and/or yoga Nidra recordings at night to be rather helpful- there are some nights when I have them going all night long lol!  The most important thing I will say about sleep is that lack of it is not going to kill you or make you go 'crazy.'  Acknowledge how much it sucks, but don't get yourself stressed out or worked up over it, as that only makes things worse.

 

 

Tips to help sleep: so many of us have that awful withdrawal insomnia

 Path to Better Sleep FREE online for everyone from the US Veterans Administration

Music for self-care: calms hyperalertness, anxiety, aids relaxation and sleep

 

I know this can all be one heck of an emotional roller coaster ride, so it's important to learn some non-drug coping mechanisms to help you through the ups and downs of withdrawal (and all future stressors, for that matter).  We have lots of threads on coping with our emotional and cognitive symptoms- I will link some of them below.  Personally, I have found practicing mindfulness every minute of every day to be the absolute cornerstone in my ability to survive all of this.  That, and using my nature sounds and yoga Nidra for sleep.  I also use a lot of CBT techniques to get through the tough stuff- things like box breathing, challenging negative thoughts, etc are very helpful.  I also love to just distract myself, by engaging in activities that bring me joy- I love to swim (I feel normal in the water!), cook, and take on artistic projects.  All of these things help me keep putting one foot in front of the other on the bad days.

 

 

Non-drug techniques to cope with emotional symptoms

 Easing your way into meditation for a stressed-out nervous system

 

Ways to cope with daily anxiety

"Change the channel" - dealing with cognitive symptoms

Dealing With Emotional Spirals

The importance of recognizing you're feeling good

 

As time passes, and you proceed through the healing process, you will notice there are times when you feel like you are doing a bit better, and times when you feel significantly worse.  This is an absolutely normal part of the healing process that we call the windows and waves pattern of stabilization.  This pattern is an excellent sign that healing is occurring.  You would likely find it beneficial to start a symptom journal, tracking your symptoms on a day to day basis, rating them on a scale of 1-10.  This would help you identify your windows and waves.  Perhaps your windows right now are the nights when you are getting a few hours of sleep- this will improve with time.  You can also track activities, supplements and foods in a journal in order to help identify anything that triggers a worsening of your symptoms.  So far, I have managed to identify a few triggers of my own- coffee (even decaf), chamomile, intense exercise, magnesium and fried foods.  Withdrawal is much easier when you are able to avoid these triggers, but the first step is finding them!  A journal is the easiest way to do this.  You can use the above list of typical withdrawal symptoms as a template for a journal, if you wish.  Here's more info on windows and waves:

 

Windows and waves pattern of stabilization

 

Most of all, please do not give up hope!  Treat your body and brain well, and you will heal in time.  Yes, it is going to take a while, but we are all healing, all the time, whether it feels like it or not.  

 

 

Are We There Yet? How Long is Withdrawal Going to Take?

 "Is it always going to be like this?"

 

In summary, since it appears you are currently drug free, the best you can do for yourself is to give it time.  Take really good care of yourself- body and mind- to help facilitate healing.  Control what you can, and work on your non-drug coping mechanisms to cope with the rest.  Start a journal to help you identify your windows and waves, and any potential triggers that could be making you feel worse.  And keep believing in healing, because it WILL happen! ❤️‍🩹

 

This is your introduction topic- each member gets one intro topic.  Please post any updates or questions here, on this thread.  But do feel free to explore the rest of the forum- there's lots of good info here!  And if you're up to it, read the intro threads of other members, and drop a comment/word of support.  As you've discovered, this can be a very lonely journey.  But you are not alone!  By engaging with this forum, you can build a whole community of people who fully understand your pain and your suffering.  The peer support here is wonderful, and I do hope you take advantage of it!

 

I look forward to following your journey!  Sending healing vibes! 

Thank you SO MUCH for the encouragement and the support!!!! I have felt SO alone! And yes, I am off all medications at this time. I am so sorry about your magnesium sensitivity, I have been taking that for a while now. I will check out the links you sent. God bless you 🩷

[Franco12]

 I'm sorry you had to deal with all those sufferings, @Cassidyamerica My best wishes for your healing process. You'll be fine, Cassidy. I always like to share user Charlie Brown's catchphrase. Recovery comes, just wait. ⭐

 

“Who relates?! I feel so taken advantage of and harmed by the medical community. I am so sad and so angry and so regretful that I trusted those idiot doctors to prescribe me meds. It is terrible having to be in a cycle of medications, then side effects- and more medications for those side effects, causing more side effects!!! “

 

Unfortunately it is an unimaginably common experience. You will find dozens of entries with similar stories in SA: out of control prescriptions, lack of interest of professionals in recognizing the unwanted effects triggered by psychotropic drugs commercially labeled as “antidepressants” or “antipsychotics” and subsequently attributing those effects in an erroneous way to “underlying processes” - without clarifying what these processes consist of, and what the etiopathogenic particularities of these entities would presumably be, and not providing any morphophysiological evidence of such disease events -, resistance on the part of professionals to recognize the duration, intensity of the process of discontinuing a psychotropic drug, etc., etc.

 

 "You are told you have a serotoninergic imbalance, but the actual science revealed there is nothing wrong with your serotoninergic system. Yet after you take the drug, there will be. That's an incredible betrayal" - RW. Indeed, that was the narrative that was presented to me a few years ago, in a monolithic way, before starting my first medication. I had no idea that walking through the office door would completely transform my entire adolescence. From there, the common thread: prescription, deprescription, non-recognition of the discontinuation syndrome and prescription of  yet another medication, and so on for years. I was completely unaware of what was happening beneath the surface.When I woke up to the reality of the situation, and looked more clearly at what had happened, it was incomprehensible the amount of time and financial resources me and my family had lost. Bue, Now I'm slowly healing !!!!!!💪 and under reparation, hahah 🛠️⭐

 

 

[Cassidyamerica]

14 hours ago, Franco12 said:

 I'm sorry you had to deal with all those sufferings, @Cassidyamerica My best wishes for your healing process. You'll be fine, Cassidy. I always like to share user Charlie Brown's catchphrase. Recovery comes, just wait. ⭐

 

“Who relates?! I feel so taken advantage of and harmed by the medical community. I am so sad and so angry and so regretful that I trusted those idiot doctors to prescribe me meds. It is terrible having to be in a cycle of medications, then side effects- and more medications for those side effects, causing more side effects!!! “

 

Unfortunately it is an unimaginably common experience. You will find dozens of entries with similar stories in SA: out of control prescriptions, lack of interest of professionals in recognizing the unwanted effects triggered by psychotropic drugs commercially labeled as “antidepressants” or “antipsychotics” and subsequently attributing those effects in an erroneous way to “underlying processes” - without clarifying what these processes consist of, and what the etiopathogenic particularities of these entities would presumably be, and not providing any morphophysiological evidence of such disease events -, resistance on the part of professionals to recognize the duration, intensity of the process of discontinuing a psychotropic drug, etc., etc.

 

 "You are told you have a serotoninergic imbalance, but the actual science revealed there is nothing wrong with your serotoninergic system. Yet after you take the drug, there will be. That's an incredible betrayal" - RW. Indeed, that was the narrative that was presented to me a few years ago, in a monolithic way, before starting my first medication. I had no idea that walking through the office door would completely transform my entire adolescence. From there, the common thread: prescription, deprescription, non-recognition of the discontinuation syndrome and prescription of  yet another medication, and so on for years. I was completely unaware of what was happening beneath the surface.When I woke up to the reality of the situation, and looked more clearly at what had happened, it was incomprehensible the amount of time and financial resources me and my family had lost. Bue, Now I'm slowly healing !!!!!!💪 and under reparation, hahah 🛠️⭐

 

 

I am SO sorry🥺 I know exactly how you feel. It is like a living hell. So much time, money, and suffering! Thanks for validating me. Bless you, get better soon I hope 🙏