Charleyhorse_Introduction

[Charleyhorse]

Hi all,

After reading a lot on this website I decided to go ahead and make an account and introduce myself.
I hope the following story is somewhat comprehensible.

I have a history of experiencing ongoing psychological distress, starting in early childhood. For as long as I can remember I have felt ‘off’. I was an anxious, melancholic, worrisome child.
Often perceived as stubborn and difficult, but on the other hand shy, and no troublemaker.

My parents often asked me what was wrong because I used to get very emotional about seemingly simple things, and I couldn’t or wouldn’t tell what was bothering me, because I didn’t know how to express myself in words. Or I didn’t understand what exactly was bothering me.

I still have this, although now I can sort of describe a bit better what is going on and have words but still I don’t understand why I feel what I feel and when I describe it to people they mostly don’t recognise what I am talking about or think I am weird.
Often I don’t fully understand what exactly it is I am feeling, what emotion it is, and also there’s a lot of physical pains and ailments of which I don’t know if it’s 1. actually an emotion or 2. a sign of an underlying deficit, or 3. a side effect of the meds or a withdrawal symptom of quitting multiple medications over the years. I just don’t understand my own body at all. There is this overall chaos inside of me.

I am pretty sure I have experienced (chronic) depersonalization/derealization since early childhood, because I always feel unreal and dreamy, not in the present, not fully awake. I have never felt a strong sense of ‘self’ and after being on psych meds for so long and quitting all of them cold turkey, there just seems to be no one home here anymore at all.

From age 14 I have been in and out of therapy. I had a yearlong stay in a psychotherapeutical centre for the youth when I was 16. This helped somewhat in that I learned how to talk about things, but it didn’t make a real difference in how I felt about myself or the world around me.
From 21 years old I have tried various psych meds to help me with this feeling of complete overwhelm and chaos from struggling with life that I just can’t seem to shake.

I have been labeled with various DSM classifications, from bipolar (not ‘officially’ after thorough investigation, but more of a gut feeling of my first psychiatrist) to having traits of various personality disorders to autism, a suspition of ADD, everything laced with depression or dyshtymia and social phobia.
My relationship psychiatry is very troubled, because I have not benefited from it’s ‘treatment’ at all and have on numerous occasions been gaslit and lied to; probably not on purpose because apparently most psychiatrists and therapists don’t know any better than what lies they have been told during their education and a lot of them are not very willing to think outside of their so called evidence based box at all. But maybe also, I failed to do the work, either out of stubbornness or out of not being able to do what they asked of me because of various reasons.

I never wanted to be on medication in the first place, but as a young woman I was very naïve and trusting in doctors and traditional medicine too much while at the same time not trusting anyone or anything but still thinking the meds were ‘safe’ and would benefit me. So I went on them and hoped for the best of it.

I should say that for a long time I failed to take care of myself in a proper way, I kept on drinking caffeine and alcohol while on meds and consumed enormous amounts of chocolate and other sweets. I smoked for 12 years. Somehow this can also be tied up to taking sertraline for almost 20 years, since I’ve read it can cause you to start drinking excessively and do all other kinds of unhealthy stuff. But I think it’s also just me, I tend to do many things excessively. And on the other side am very restrictive, I don’t know how to moderate myself very well.  Things often seem to be rather all or nothing.

Since quitting sertraline for the second time, life has continued to spiral out of control, and since there was hardly any control or balance to begin with, chaos is now my daily companion. On the outside I often seem reasonably calm and put together, when I talk to people they seem to understand me and I come across as intelligent, but inside there is this wild animal that is trying to get out and if I am experiencing too much stress or pressure I get very agitated and aggressive and lash out.

There is no real telling whether the ‘symptoms’ I now experience are stemming from my original reason to go on meds or from (protracted) withdrawal, alongside of side effects. I have been on various different medications, sometimes two or three at the same time (luckily not any more than that).
I’ve read a lot about withdrawal symptoms from sertraline and I seem to have (some of) them, but since I already had most of them before I ever went on meds, I am not sure if they actually are withdrawal symptoms, or just signs of my ‘condition’, and sertraline was 'helping' me all along.

It doesn’t help that I have very little sense of self (and now even less after coming off of sertraline in 2020 and experiencing something I cannot describe other than ‘hell’) and can’t differentiate between ‘me’, and ‘me on meds’.
I just don’t function at all.
I don’t have a job, I live with my parents after getting into crisis from tapering sertraline in 2020 which ended my relationship of almost 15 years. I have no motivation or energy to do anything, but I still do some things in spite of that. I run, I walk, I practice Brazilian jiu jitsu. I sometimes work in the garden. I spend time with others. I do yoga a couple of times a week. I do meditation/mindfulness and/or breathing exercises. I do chores around the house. I go to appointments with doctors etc.
A lot of it is somewhat haphazardly and depends on whether I can muster the energy and motivation.
There is a lot of inner tension and resistance, which starts as soon as I wake up. I wonder if I experience akathisia, because a lot of the time I want to just tear my skin off from feeling so uncomfortable within my own body. But then again, I already had this -albeit more moderately- before I ever went on meds.
I have extreme suicidal and even homicidal ideation. Again, not really new to me.
There’s this RAGE that I cannot seem to shake whatever I do. Also, not really new, since I have felt a certain amount of hostility towards others for as long as I can remember, although there have been periods in my life in which I felt less hostile and more agreeable, but still very frustrated and lonely.

DP/DR have been there for as long as I can remember, but they have gotten worse since going off of sertraline and most certainly since going back on in october 2020. After going back on I had this chemical feeling in my head which didn’t subside till after a few months, and maybe it’s still there but I just got accustomed to it I don’t know. I just feel out of it all day everyday. And I don’t know how to cope.
Years of weekly talk therapy have not helped me really, because I think I was too dissociated and too drugged and numb to actually experience benefit from it. Also, as stated before, a lot of it just didn’t/doesn’t resonate with me so I fail to see the reason why I should do as they ask.

I feel absolutely no connection to others or to myself. There is a lot of dysphoria. I feel very angry and frustrated almost all of the time, desperate and immensely sad. But it’s also distant. I do laugh sometimes or feel a certain sense of relief (especially when I get to go to sleep again and don’t have to feel this sense of distress any longer), but  I just can’t seem to experience any real positive feelings.
(Extreme) feelings tend to completely paralyze me or make my muscles go limp. My brain freezes or goes offline very often and I am never really ‘online’ to start with. Again, not really something new.

Nothing feels ‘okay’ or neutral. I apparently feel (very) unsafe around others. I feel I cannot guarantee my own or anybody else’s safety (this is new though, or maybe I just now started realizing it now I am not so drugged up anymore).
I feel highly impulsive and have trouble starting and continuing activities; but sometimes I cannot stop doing certain activities until I am 'finished'. Concentration and focus are really bad. Everything feels completely useless and meaningless, so why do anything?

Reality is often something I can’t seem to grasp. So is time. I feel like I am never fully awake, which I know can be caused by sertraline and withdrawing from it, but I also experienced this as a child.

I have surges of adrenaline throughout the day, also not really new I guess. And I seem to be always in some sort of near-panic. At the same time, nothing really matters. I feel very indifferent towards my own fate and towards others. There’s little to no empathy. Maybe that was never there to begin with.

There’s physical things. Since quitting sertraline cold turkey in 2011 I started burping a lot, as where I couldn’t up till that point. There’s GERD.
Muscle weakness and rigidity, joint pain, back pain, pelvic pain. Headaches and a very sensitive upper part of the head, sometimes feeling as if my crown chakra is open and I can’t seem to close it. There’s muscle twitching and restless legs and bouts of dizziness accompanied with muscle spasms throughout my body. Heart palpitations. Problems breathing. Urticaria, itching, dry mouth, trouble sleeping, having to urinate a lot. Having the feeling of not being able to nourish by body and mind correctly. Panic in the stomach. Feeling as if my brain and body don’t get enough energy or oxygen to get through the day without having to rest excessively. Feeling hungover a lot, and ‘hangry’ when I don’t eat on time. But then often feeling ‘hangry’ right after eating.
Sweating profusely from little effort. Feeling tired and wired at the same time.
All of it I have felt for years, and it may or may not be related to taking sertraline and quitting it and all of my other meds cold turkey.
Discussing this with a GP or psychiatrist has been on many occasions fruitless, since they just chalk it all up to my ‘condition’.
But I’ve come to understand that a lot of it can actually be caused by sertraline and going off of it cold turkey.

There is also still the idea that there is something else not working right in my body, but I can’t pinpoint it. Again, talking to doctors about this has led to being called a hypochondriac and being belittled, which has not at all been good for my (mental) health.
I just seem to be too much for a lot of people. Too difficult, too complicated. They don’t know what to do or say. But instead of telling me in all honesty  they just don’t know what’s going on and are very limited in what they have to offer that might help, I was on many occasions led to believe that it was my fault I was not getting ‘better’.
There seems to be some form of trauma, but since I was never allowed to talk about my past in therapy, because that didn't matter, I don't really think it's an issue, or it's significant enough to have caused me this trouble.

I am tired. I can’t seem to figure out what is going on with me. Moreover, I can’t seem to find a way to deal with it all. Life s completely meaningless and arbitrary. I feel indifferent to my own or anyone else’s fate. I have no idea of what goal(s) to pursue and why. I just don’t feel like a human being anymore and I have neither the energy, will or capacity to make anything positive out of ‘life’.
I feel like a machine, I generate behavior. I try to play the part of human, but I don’t grasp what it is to be human. I have no idea if I was born this way and sertraline and quitting it made it worse, or if I have been transformed under the influence of sertraline. I guess it all depends very much on who you talk to.

I don’t know if what I wrote is complete and precise.
My medicine history is in my signature. I can elaborate on why and how and when I got on certain meds and stopped taking them.

I already talked about things I do to try to make things ‘better’, or as it feels to me: less worse.
What I did not mention was that some of the intestinal problems seem to be ‘better’ when not or not eating too much gluten, dairy, sugar, soy. I did the ‘whole 30’ elimination diet in 2021, without experiencing much benefit.
I went to see a functional doctor last week and we are looking into whether I might have a dysfunction in the thyroid or hypothalamus or pituitary or that I might be needing vitamin B12 injections.
I tried a lot of things, for a considerable amount of time and as consistently as I can manage to while being in this chaotic state, but without any significant change for the better.
I just don’t know how to appease my body so that it functions reasonably ‘well’.
Maybe I do too much.
It just feels like all my instruments are ‘off’ and I feel beaten. There is no sense of direction. And life just thunders on while I stand here nailed down to the ground, not knowing what to do or where to go. Not even knowing whether I even want to live.
I feel devastated.

Lastly, I wanted to say that I take my medication (now 26 mg of sertraline) in the morning, roughly around 8. For years I took it before going to sleep. There doesn't seem any major difference in taking it mornings or evenings, nor do I seem to experience any major difference or setbacks when I don't take it at exactly the same time everyday as some people seem to .
On the days that I take diazepam (1-2 mg), I usually do this in the afternoon or in the evening. I try to refrain myself from taking it too often, knowing how addictive benzodiazepines are.

[Altostrata]

Welcome, @Charleyhorse

 

It appears that you have been tapering sertraline since August 2021 and are currently taking 26mg? Which of your symptoms do you attribute to withdrawal?

[Charleyhorse]

Thanks @Altostrata

I am not quite sure which of my symptoms I can attribute purely to withdrawal, since almost all of what I am experiencing now seems to have always been there from early age but now that I'm tapering it's either coming back or it feels more exaggerated than before. 

When I cold turkey quit back in 2011 and I tapered too fast in 2019/2020 there were a few distinct things I noticed: in 2011 I started burping, which I could never do before, and there was this extreme anger and frustration and a complete lack of care/empathy/love towards the people around me. Also, a feeling of being completely unmotivated and unwilling to do whatever, my brain felt weak, like it became liquified. This lessened a little when I got back on sertraline, except for the burping. That stayed.

 

Second time off, in 2020, I started having brainzaps/brainshivers which I never had before. There were other things, like feeling extremely depressed, hopeless and suicidal, again the extreme anger and frustration and rage, no feeling for anyone at all, extreme DP/DR. What I felt in my body was an enormous amount of pressure and I tend to see it as either a sign of extreme anger or extreme terror. Pressure in my muscles, my pelvis, my neck, my head.

At the time I also was in a lot of pain from very physical work and practicing martial arts two times a week. I had GERD, a pain in the bladder as if I had an infection (which I didn't have).

These things led me to first quit smoking and second to quit drinking caffeine, because then at least that was out of the equation.
 

The physical symptoms came before the psychological, I remember that. Although I never was without psychological distress, it worsened a whole lot once I was completely off of sertraline. I think also due to being in such severe pain that I couldn't do much anymore, and I started losing sleep because my bladder/pelvis was hurting so much.

In the end, I couldn't walk more than 100 meters and I almost stopped eating. I had a constant feeling of extreme dread and jitteriness, butterflies in stomach and throughout the rest of the body. I needed to pace and couldn't sit still but at the same time was extremely fatigued from not sleeping (wired/tired). Heart pounding in my chest. Extreme racing of thoughts and not being able to think clear and just an overall feeling of needing to get to safety but where? Just pacing, having to sit down, not knowing what to do next, not being able to complete a task. Surges of adrenaline shooting through my body. Knees going weak.

I finally noticed that the extreme jitteriness and weak knees were worse if I was near my then partner. The same thing that happened in 2011 happened again, so when I was offered to go back on sertraline I wanted to, because I did not want to lose my 'good' relationship. I was admitted to a clinic to 'monitor' the process of going back on the meds.

Alas, reinstating did not make things better. Only like half an hour after taking the first 50 mg, it felt like my brain was being blendered, and that feeling did not go away for a long time, and probably never has but I got used to it somehow. I finally went back to 100 mg, not the original 150. I was done with sertraline.

The brain zaps stopped after a while, so did the butterflies. The feeling of bladder infection went and the pacing became less. The strange feeling in the knees and the surges of adrenaline became less. I started eating again when I was in the clinic. I never went back home, my relationship was over. It took me a very long time to sort out things with my ex, because I just couldn't stand being close to him. Before I went to the clinic my psychologist called my condition 'near catatonic'. I still don't know if it's from going off or from going back on sert.
The first few months of being back on I had this constant chemical feeling in my head. Also, the anger and rage didn't subside, like they did the last time. The suicidal ideation also didn't subside. DP/DR seems worse than ever before.
It's probably also because of starting tapering again in august 2021, because I was absolutely done with being on sertraline. Maybe I should've 'stabilized' for longer,
but the feeling of being occupied by this vile stuff drove me to start tapering again.

I noticed when I dropped from 100-75 and tapered from 75-50 over a month/5 weeks, the jitteriness/butterflies/strange feeling in the body and mostly the knees became worse (I don't think it ever subsided/subsides completely). Also when I did a 10% drop at once, last november. Though I recognise the feeling from before I ever went on psych meds, it seems to be some sort of withdrawal indicator.
 

So, long story short: the 'butterflies' seem to be a withdrawal symptom and so did the brainzaps (which I haven't had since maybe spring of 2021). I do have dizzy spells sometimes, which started in 2021, but I don't know whether to attribute them to withdrawal or not, because they just seem to randomly come and go and might also be there because of the extreme tension and nervousness I'm feeling and the considerable amount of screentime I subject myself to almost every day.
All of the other symptoms I am experiencing I cannot be sure of if they stem from withdrawal or not. I know (withdrawing from) sertraline can cause or exacerbate DP/DR, suicidal (and even homicidal) ideation, automutilation, feelings of dysphoria, anger and despair, insomnia, the general feeling of unease in the body, wanting to crawl out of my skin, the intrusions, the cognitive disfunctioning, pain and weakness in muscles and joints, the complete absence of any motivation for anything, and I'm sure I forgot a bunch of them. I have the feeling I am in a dire spot here, I really don't know whether things will become 'better' or just plain worse the further I go.

 

I know I kindled myself/let myself get kindled and that makes it all the more difficult to navigate through this. Don't really know whether to halt my taper for now or not. When the dose was higher, I just waited until I felt roughly as 'equally miserable' as before, but the lower I go, the worse things become, the DP/DR seems to be getting worse, the sense of self and sense of reality and time sometimes just seem to evaporate completely, though not as bad as it was in december 2020, when I was sure I just blew some (or all) of the fuses in my brain. I feel chronically suicidal and at the same time it almost feels like 'just' an intrusion sometimes (so I don't know whether I truly want to kill myself at times, or that it's just a thought that my brain has picked to obsess about, which in itself becomes then something to obsess about). The OCD type of things were already there when I was younger, so that for me is not a withdrawal indicator.

Pfff, I'll just leave it at that for now.

[Altostrata]

Which of your current symptoms are most troublesome to you? How do you feel before and after you take sertraline every day? Are you taking any other drugs?

[Charleyhorse]

@Altostrata Since I am not sure whether my symptoms indeed are withdrawal symptoms I find your first question very difficult to answer.

I would say the most troublesome symptoms/issues I experience at the moment are the bouts of rage and despair, the suicidal (and homicidal) ideation, the cognitive impairment, the worsened DP/DR, the overall physical tension and weakness, all of which are worsened by sleep issues. Not to mention the sheer indifference/total lack of motivation to engage with life I feel most of the time. I feel very 'heavy', with no positive life energy. Just completely drained. There's chaos inside of me, I often have no clear sense of reality, sense of time, sense of my own age or current status, what is 'inside' and outside world.

But maybe this is just 'me' and not 'withdrawal', since most of it it was already there before my last attempt to taper, albeit less than it is now. Sometimes I think it already pooped out several years ago, when I began feeling even more exhausted than I did before.

 

There's no difference in how I'm feeling between before and after taking it in the morning, maybe because of the DP/DR and the cognitive impairment.

 

I sometimes take 1-2 mg of diazepam, when things get really bad and all other methods to calm myself down fail. I can go for weeks without it, then there are weeks I take it once, sometimes twice.

[Altostrata]

On 7/28/2023 at 6:35 AM, Charleyhorse said:

now that I'm tapering it's either coming back or it feels more exaggerated than before. 

 

Which of your symptoms came back or were exaggerated after you started tapering?

[Charleyhorse]

I'm afraid I'd have to say all of them. There seems to be no compass to sail on here.

The DP/DR is definitely worse, since coming off sert. in 2020 and it never got any better with reinstating/stabilizing.

The dysphoria. Feelings of unease/(near)panic/agitation followed by periods of feeling very low and almost unable to move (what's the use?).

The problems with motivation and starting and continuing on a task.

A lot of it has to do with not having enough energy to make it through the day.

The one thing that stood out for me after my taper in 2020 besides the brain zaps was the jittery butterfly feeling in the stomach and in the whole body actually. I remembered that from childhood. It feels like an ongoing falling sensation. There's a sinking feeling in my stomach, it feels like a sort of hunger.

Accompanied by the idea that everything I do or ever will do is completely pointless, useless, meaningless.

There's also the feeling of falling apart, disintegrating, losing my mind, being swallowed. Ah, I guess people would call it anxiety. And it's mainly physical, because thinking becomes or is nearly impossible.

[Charleyhorse]

Ach, I forgot certain other things. The sensitivity to certain stimuli, especially sound.

The extreme freezing and flopping responses when triggered (and triggers can be almost anything...).

The buzzing in my ears and my whole body sometimes.

I feel zoned out a lot, and when not experiencing things at a certain moment, I completely forget about it until it comes back with a vengeance.

Maybe more will come...

[Altostrata]

It sounds like you have had periods of adverse drug effects and withdrawal effects from your considerable drug history.

 

What is your goal in tapering your drugs?

[Charleyhorse]

I really have no idea if I can attribute it to the drugs, since most of it was already there before I ever took any psych meds. I have also been indoctrinated by psychiatry to doubt my own gut feeling and ratio and to not doubt the safety and efficacy of the drug.

So in order to find out what is 'me' and what is side effect or withdrawal effect of the sertraline I have decided I will taper it slowly until I am fully off and I hope it is a goal I will attain. 

 

At the same time I do feel quite unstable right now and don't know if it's wise to taper any further.

There's no real way of knowing what's best to do now, because I do not think things will get better by holding my taper and at the same time I simply cannot know in advance if and when I will feel any better if I go on and how things will be once off it.

I feel stuck.

[Altostrata]

Quote

July 2023: at 26 mg

 

This was your last drug change? What date in July was it?

 

How often do you take diazepam or another benzo?

[Charleyhorse]

On 8/3/2023 at 9:20 PM, Altostrata said:

 

This was your last drug change? What date in July was it?

 

How often do you take diazepam or another benzo?

Hi Altostrata,

 

I looked back in my notes. I started dropping gradually from 29 mg on may 14, june 4 I was on 27,5 mg. Then I stopped for a couple of weeks, and gradually dropped again from july 7 (26,5 mg) until july 19, when I landed on 26 mg. So my last dose change was on july 19.

I apparently also in the same period changed from taking it in the evening to taking it in the morning. I thought I did that a couple of months ago, but it was at the beginning of june.

None of it made me feel that much worse (or better) from the 6 months during which I changed absolutely nothing.

Also, I should note that in april I started doing neurofeedback and have been practicing for nearly every day since then. Unfortunately still without any positive outcome.

 

Other than diazepam, I take no benzo's at the moment. It really very much depends on how I am doing mostly as a result from what is happening. I can go for weeks without ever taking it or even thinking about it. Then something happens and I take it one day, or sometimes two and in very rare cases three days in a row. 1 or 2 mg. Last time I took it was july 16, 2 mg.

 

Looking at my notes I do realize that I am doing things fairly sloppy at the moment. The first 5% drop I did in 3 weeks, and the second in 1,5. Or, it's a 10% drop in two months.

I haven't done 5% drops before, I always did 10% gradual drops before November 2022.

I have now stabilized for 2,5 weeks. So another 1,5 to 3,5 weeks to go before doing another drop.

 

The DP/DR and/or brainfog make it very hard to keep track of things. I have a very disturbed sense of time and reality and am very forgetful.

I used to make notes every day at the end of the day, to write 'successes' and/or to reflect on my day. I don't do that anymore. I just can't be bothered. My last notes were from 20 july.

I'll start writing again. Even though I don't really care.

[Altostrata]

As I understand it, you're currently taking 26mg sertraline per day, having taken it or other antidepressants for 22 years.

 

What we've seen is that if people take antidepressants for a long time, they tend to become emotionally limited and demotivated. Going on and off drugs and having adverse reactions to drugs tends to increase this. It appears that you have drug-induced emotional blunting.

 

Gradually reducing the dose might reduce the fatigue. The emotional blunting tends to gradually go away over many months off the drug.

 

Since your last dosage reduction on July 19, have you had any unusual symptoms, such as 'butterflies', brain zaps, or dizzy spells? How's your sleep?

 

On 7/28/2023 at 6:35 AM, Charleyhorse said:

All of the other symptoms I am experiencing I cannot be sure of if they stem from withdrawal or not. I know (withdrawing from) sertraline can cause or exacerbate DP/DR, suicidal (and even homicidal) ideation, automutilation, feelings of dysphoria, anger and despair, insomnia, the general feeling of unease in the body, wanting to crawl out of my skin, the intrusions, the cognitive disfunctioning, pain and weakness in muscles and joints, the complete absence of any motivation for anything,

 

Yes, those could be withdrawal symptoms. You've been on and off drugs for a long time, you might have had overlapping withdrawal symptoms.

[Charleyhorse]

On 8/7/2023 at 2:41 AM, Altostrata said:

As I understand it, you're currently taking 26mg sertraline per day, having taken it or other antidepressants for 22 years.

 

What we've seen is that if people take antidepressants for a long time, they tend to become emotionally limited and demotivated. Going on and off drugs and having adverse reactions to drugs tends to increase this. It appears that you have drug-induced emotional blunting.

 

Gradually reducing the dose might reduce the fatigue. The emotional blunting tends to gradually go away over many months off the drug.

 

Since your last dosage reduction on July 19, have you had any unusual symptoms, such as 'butterflies', brain zaps, or dizzy spells? How's your sleep?

 

 

Yes, those could be withdrawal symptoms. You've been on and off drugs for a long time, you might have had overlapping withdrawal symptoms.

 

Indeed, I am on 26 mg of sertraline a day. I have been on it for 19 years, and have been on other medications before and while on sertraline. I have tried to quit sertraline twice, once in 2011 (cold turkey) and once in 2019/2020, via a 'slow' taper, guided by a psychiatrist.

 

The strange thing is, I can have very strong emotions and often feel completely overtaken by them, but they're mostly negative.

 

Since my last dose reduction, I've felt there's no real difference from before. Brainzaps I don't have at the moment, although I am not 100% sure: I think I may have them during the night sometimes, because I often wake up with a jolt, feeling dizzy and disoriented, with a racing heart, and it feels like I just had a brainzap (I remember the feeling from 3 years ago when I did have them both during the night and during the day).

The butterflies I have sometimes yes.

I have dizzy spells and a feeling like being on a boat quite often (feels like my brain is spinning or swaying). Sudden (eye) movements can bring it on, but also when I am just lying in bed. I often get seizure like sensations of muscles contracting, accompanying the dizziness.

 

My sleep is awful and has been that way for years, but I remember it being like that since childhood, so I do not directly link it to the use or withdrawal of SSRIs. I always had trouble with very vivid dreams (and nightmares), waking often during the night, feeling disoriented and not waking up in the morning feeling rested.

 

I often have a very restless feeling in my muscles and head (I also experience restless legs, but that seems to be a bit less now) that makes it hard for me to fall asleep, I wake up very often and then have a hard time going back to sleep again, sometimes lying awake for hours (often ruminating or seeming to be 'too tired to fall asleep', like I need to concentrate on it and it doesn't work). I often wake with a racing heart, needing to urinate, but not having a very full bladder, so it makes no sense to me.

I don't wake up feeling refreshed and ready to take on the day, but I think I already had that before I ever started taking meds.

 

I must say I am very hesitant to believe things are either a side effect of the sertraline or from withdrawal and will get 'better' once I am down in dose or off the drugs, since I have been very much indoctrinated by psychiatry to believe that every feeling I perceive in my body is either 'nothing' and I'm exaggerating (like I am 'just' having (health) anxiety and there's nothing to worry about) or it's part of my diagnosis, so part of my condition and in no way can it ever be related to the drugs I am taking or have been taking. I also have had many of the symptoms from before I ever went on drugs.

This makes it all very hard to differentiate between reasons to go on drugs and side effects/withdrawal, and I must say it scares me a lot. It makes things hard to endure.

It is very different from having an injury, which is not nice to have, but I know will be better in time, it has an 'end date' and that eases my mind. With this, there seems to be no end date, and things just seem to get worse, and they never have really been 'better'. There never was a period in my life that I felt just 'ok'. 

Having DP/DR and no stable sense of self or reality makes it very hard to endure this. In all honesty, I often just want to die, because I don't know if I can take any more of it.

 

[Nelly]

@Charleyhorse

I have read some of your posts, because i searched "autism" and your introduction appeared in the search. I hope you are doing ok with the tapering. 

A lot of what you say in your first post i can relate to.  I have recently duscovered that i am autistic. It has come as a massive breakthrough at aged 59 years to finally understand some of my struggles. It all makes more sense to me now. I wondered if you have considered seeking an assessment for Autism? 

I know some dont agree with this diagnosis, but for those of us who have struggled all our lives without making any real sense of why, it can be very helpful and come as a relief. Just wanted to mention this as many just done see it until someone brings it to their attention x

[Altostrata]

On 8/5/2023 at 12:20 PM, Charleyhorse said:

So my last dose change was on july 19.

 

It's been about 3 weeks since your last dosage change. Did you get noticeable withdrawal symptoms soon afterward? When did they show up? How does your current symptom pattern compare to 2 weeks ago?

[Charleyhorse]

16 hours ago, Altostrata said:

 

It's been about 3 weeks since your last dosage change. Did you get noticeable withdrawal symptoms soon afterward? When did they show up? How does your current symptom pattern compare to 2 weeks ago?

Unfortunately there is no pattern I can link to reducing the dose. Everything I am experiencing was already there before I reduced the dose. Current symptom pattern is about the same as it was two weeks ago. Overall, things seem to be gradually getting worse.

The only thing I've noticed is that the GI issues and fatigue have gotten a little worse in the last week/two weeks. I have reason to believe this is not from reducing the dose as there have been changes in diet/social life/frequency of exercising as well. There are just too many variables that could be influencing my current state that I think have nothing to do with changing the dose of sertraline I am taking.

[Charleyhorse]

@Nelly

 

Thanks for your message.

 

Tapering is not going well I have to say, but I am tapering anyway, because I want to be off of sertraline to see how I am without it. I have been on it for such a long time on such a high dose that I don't know what's underneath it anymore.

 

How did you discover you are autistic? Have you had it assessed?

I did. 15 years ago. But it means very little to me. I typed a whole story here, but I decided not to share it, because it went into great detail and that feels too personal right now. Just wanted to say that psychiatry's diagnoses (since I've been given more than just one) actually mean next to nothing to me, and being treated with 'evidence based' methods means even less than that.

 

I am not convinced I am autistic/have autism, but neither am I convinced about any of the other diagnoses as well. They aren't even diagnoses, they are classifications, since the DSM is nothing more than a catalogue filled with classifications of certain behaviors and symptoms and doesn't say anything useful on how I got to be as I turned out to be and how I can make things better for myself.

And still, at the same time, I am still searching for a 'diagnosis', an explanation, what is 'wrong' with me? Why don't I function 'properly'?

Why do I feel the way I feel, which is awful? And why has nothing/nobody been able to help me live a more balanced/fulfilling life? I see people who feel comforted by their diagnosis, they finally understand what has been going on for all these years. For me personally, I am just not convinced it's autism, or a personality disorder, or AD(H)D, or.....

All psychiatric 'disorders' or subsets overlap in one way or another. Psychiatry is far from scientific, yet claims it has evidence based methods to 'treat' people.

I am sorry if I sound cynical or angry or confused. All I know is I feel very disturbed and it seems to be getting worse, I don't even feel like a human being most of the time.

 

I guess I feel jealous of people like yourself, who have found out what has been bothering them all these years and do feel things are falling into place by receiving a diagnosis of x,y or z. In no way do I want to attack you and I hope it doesn't come across as so.

I think it's a good thing you are mentioning this to others, since for some (or a lot) of them it indeed can be a relief.

[Altostrata]

On 7/28/2023 at 6:35 AM, Charleyhorse said:

I noticed when I dropped from 100-75 and tapered from 75-50 over a month/5 weeks, the jitteriness/butterflies/strange feeling in the body and mostly the knees became worse (I don't think it ever subsided/subsides completely). Also when I did a 10% drop at once, last november. Though I recognise the feeling from before I ever went on psych meds, it seems to be some sort of withdrawal indicator.

 

These would be withdrawal symptoms. Do you still have these symptoms? Is there any variation in your symptom pattern throughout the day?

 

14 hours ago, Charleyhorse said:

Why do I feel the way I feel, which is awful? And why has nothing/nobody been able to help me live a more balanced/fulfilling life?

 

How do you feel awful, and how is it getting worse?

 

I am confused about what you want to do. If you have been tapering and your symptom pattern is unchanged from before you started psychiatric drugs 22 years ago, it's your decision if you want to continue tapering off or stay on the dosage you're taking.

[Charleyhorse]

Hi Altostrata,

 

I have the jittery feeling sometimes, not every day; when I have them it's mostly in the afternoon, right before or after dinner. I suspect it has something to do with my microbiome, because when I eat dairy/sugar/gluten or a combination of those or when I drink caffeine I can expect it to appear. And sometimes it appears by itself. It isn't as bad as it was when I dropped from 100 to 75 mg or when I jumped 10% in one go last november or when I finished the 9 month taper three years ago, but it's there. It is like the feeling you get when you're on a rollercoaster ride.

There are more symptoms that I've seen described by others as being withdrawal symptoms (like (worsening) DP/DR and extreme suicidal ideation amongst others), but since I already had most of it before I went on meds and during taking them/CT-ing all of them (albeit far far less severe than it is now, and that is what's worrying me), how can I be certain it actually is (protracted) withdrawal and I will overcome it?

 

What I mean with feeling awful and that things are getting worse is: since tapering sertraline three years ago my life has spiralled out of control and I have not been able to get back on my feet again, although I was never 'on my feet' to begin with.

I went back on sertraline because I had a very hard time handling what was happening and I had hoped it would be the same story as in 2011 when I cold turkey quit: to go back on and be somewhat 'allright'/'better', although still feeling miserable, but at least not as angry/feeling like I went off the cliff. The thing is, it never really got any better after going back on in October 2020. The anger and suicidality and extreme DP/DR (among other things) never left, although at some times they were a little less in my face so to say.

Eventually I was able to do some things again that I wasn't able to do before (like exercising, going to crowded places). And things didn't bother me as much as they did before, although they still bothered me but not up to the point that I wanted to for instance kill a bird because I couldn't stand to hear it singing.

Things got a little less chaotic sometimes. My sense of humor started to come back. I had a little more energy. I could stand to be around people somewhat better.

Now, since the drop in November I think, or maybe already before that, things are starting to go down south again.

They weren't 'good' to begin with, but things now are definitely getting worse. Which means: DP/DR gets worse, suicidality, I am losing contact with reality more and more. I feel exhausted all the time, pain seems to be getting worse. Does this give you a better insight into the situation?

I don't know if for instance the DP/DR is getting worse because of withdrawal, or because it is my natural state of being so to speak? So the reason why I got on SSRIs in the first place?

 

I feel just as or even more confused than you do. I really don't know what is the wisest thing to do here.

Some people say: taper anyway, other people say: hold the taper until you are somewhat stabilized, because you have been going too fast. But I'm wondering how am I going to stabilize if I can't differentiate between reasons to go on, side effects, and (protracted) withdrawal symptoms?

I am starting to loose my mind again like I did in 2020 and I don't really feel like gambling with my life. I guess I am looking for certainty where there can be given none. I am in a situation I wish no one to be in. At this moment I feel about 75% sure that I do not want to live anymore, but I do not want to take my own life before I have tapered this wretched drug and have felt what it's like to live without it for some time. And I do not know whether I can achieve this or not and whether that is due to 'needing' it (as I have been told so many times by different psychiatrists) or having become dependent on it. Maybe I will feel better without it, maybe I won't. Maybe I'll feel worse. Will I be even able to obtain that goal? Will I go back on it once I am off and I feel worse? Probably not. But I can't be sure, because when things get as bad as they did in 2020, I'll maybe start begging them to put me back on.

 

I wish things were as clear-cut for me as they seem to be for some people that taper their ADs. They unfortunately are not. My symptom pattern isn't the exact same as it was before I started taking meds 22 years ago. But some things now feel the same as they did when I was a child or an adolescent. I.e. the jittery feeling in the stomach and legs. Does this mean that I actually would be better off staying on the meds? I don't know, because they could just as well be 'just' withdrawal symptoms.

It feels like all bets are off. And I have a very hard time coping with that.

 

[Altostrata]

Please let us know if you want to taper your drugs. 

[Charleyhorse]

Yes I want to taper. I thought I was clear on that. But reading through my own reply I can see that I am not really clear.

But I do want to get off this med.

I just don't know what's the safest route to go.

[Altostrata]

See Tips for tapering off sertraline (Zoloft)

[Charleyhorse]

Thank you Altostrata

[Charleyhorse]

Yesterday I went down from 26 to 25,16 mg.

Today second day.

 

Yesterday:

08:30-9:00: took my medication

After medication: breakfast

After breakfast: neurofeedback training for 30 minutes

 

No real changes in symptoms, if what I'm experiencing are even withdrawal symptoms. I still don't know.

Crying spells all day, no motivation to get out of bed, every other thought is one about death and taking my own life.

 

After training: looked on this site some, played a game, texted some people, talked for quite some time to someone via chat about dissociation.

 

12:30?: lunch

 

15:00?:  I decided to go to the town I used to live in to go to the pharmacy and get the vitamin B12 shots that are prescribed to me by a doctor that does complementary healthcare.

It will be there for me on Monday. I am still in dubio whether or not it is a wise thing to start taking it according to some things I have read here and because I just did a drop.

After that I went to a nearby ecological supermarket to get coconut oil, ghee and cashew butter.

Feeling scared/panicky, difficulty holding back tears

Upon driving away my car broke down and I had to call roadside assistance.

In these kinds of situations I often feel very upset, chaotic and overwhelmed on the inside but on the outside I seem reasonably calm and am somewhat able to pass for 'normal' and 'handle' the situation.

Had a meltdown in the replacement car on my way back 'home'

 

19:00? dinner. One of the reasons I had a meltdown might be a drop in bloodsugar from eating later.

 

20:00? 30? minute walk in the forest, saw 4 roe deer

23:00? sleep after scrolling on Instagram for way too long and reading some pages in Robert Whitakers Anatomy of an Epidemic

 

4:00? after waking up earlier in the night and having to go to the bathroom I woke up and couldn't fall back asleep anymore. Tried a guided meditation from Smiling Mind app. Didn't work.

Finally fell asleep from listening to Michael Sealy's guided sleep meditation Uplifting your Higher Self

 

[Charleyhorse]

Today (19_08_2023)

 

7:30? Woke up. Feeling hungover and groggy and almost immediately very tense and angry, just like every day. Not with a jolt of panic for a change. Feeling heartbroken and suicidal

8:30? 9:00?: 25,16 mg of sertraline

9:00: breakfast

After breakfast: neurofeedback training

10:30? chatted with someone from online support because I felt suicidal and I had made an appointment to come to the chat again today

12:30? 13:00?: lunch. A can of sardines and a tomato. I find it difficult to eat these last weeks (I recognize this from 3 years ago. In the end I couldn't eat anymore). Lots of GI symptoms.

Wanted to go for a run (because it's 'good' for me), but had no motivation and went back to bed. Texted some people. Played a game, looked on the internet.

Crying spells, extreme SI, wanting to hit myself out of pure frustration and anger. 

16:45: went for a run. 5,8 km. Not too much pain, angry rumination and no adrenaline surges I was fearing.

After: Drank 3 glasses of water with some Himalayan salt and took a cold shower. Felt a little less 'out of it' and a little calmer.

18:30?: ate some pizza with my parents, although I didn't want to eat.

19:15/19:30: wrote and posted notes on yesterday

19:47: I feel tired and dissociated. I want to go to sleep. Will try to wait a little

[Altostrata]

What do you mean by suicidal? How long have you felt this way? Has this gotten worse since you started tapering sertraline?

[Charleyhorse]

Meaning wanting to end my life.

At the same time there's also an OCD element to it. So it's partially wanting to die and partially an intrusion, sometimes almost like a song getting stuck in my head and I desperately want it out of there.

 

Once again, I don't know whether this is 'me' or me on drugs/in (protracted) withdrawal.
I have felt this way before in my life, starting from when I was a teen, but since coming off of sertraline in 2020, I would say it has become chronic.

In the past three years it has fluctuated. There have been days I did not think about suicide.

 

Since november 2022 (dropping 10% at once, instead of gradually as I did before) SI has become daily again and quite debilitating as well.

It feels like I am going into summer 2020 modus again, alternating between intrusions/unwanted images, feeling the 'need' or 'urge' to die or (self) destruct/annihilate, and the wish to end the pain (both mentally and physically).

I have never acted on the impulse to kill myself but fear sometimes I won't be able to stop myself once I am low enough.

 

Since 2020 I have started actively harming myself, whereas before I thought about it but didn't act on it and merely had passive suicidal ideation and behaved very self destructive/uncaring about my own fate at times.

The self harm is provoked by feelings of extreme agitation, restlessness, frustration, rage, self hatred and despair and mainly consists of punching or hitting myself in the head and on the body. I sometimes wonder if it may be partially due to akathisia, although often enough I do not think I actually have that and that it's 'just' me and/or withdrawal.

 

[Charleyhorse]

How do I keep my daily notes readable?

There are symptoms that I have everyday, that just fluctuate a bit. If I list everything, the notes will become too long.

Besides that, a lot of things I cannot for 100% chalk up to (protracted) withdrawal, since I already had them before I went on meds.

DP/DR/brainfog makes it hard to notice and record things, haven't figured out yet how to deal with that. I forget things and forget to write them down. Or when I start writing, I have a blackout and don't remember anything or how something was bugging me all morning for instance.

 

[Altostrata]

On 8/20/2023 at 3:31 AM, Charleyhorse said:

So it's partially wanting to die and partially an intrusion, sometimes almost like a song getting stuck in my head and I desperately want it out of there.

 

You will need to get this habit of mind in hand in order to go off your drugs.

 

As peer counselors, we cannot respond to emergencies. We also cannot provide counseling for you for suicidality, we don't have the training. 

 

Please stop tapering until you can find a therapist with whom you can discuss your inclination to self-harm. This is beyond our capacity as peer support.

[Charleyhorse]

Thanks for your reply Altostrata,

 

In answer to your message I'd like to say that there is no expectation whatsoever on my part for you to respond to emergencies nor do I expect you to provide me with counseling for suicidality. I know that this is beyond your capacity as peer counselors and it is not what I'm here for.

I am already seeing a psychotherapist and a psychiatrist on a regular basis. I know which route to take if things get worse.

 

As for the self harm: I do not engage in this on a regular basis. I just wanted to mention it as I thought it might be a symptom of withdrawal, since I have only started doing this after I got off of sertraline (even later, when I got back on it). Whereas before, as I mentioned, it was just thoughts, and also, not on a regular basis.

I has been weeks, months even since I last resorted to self harm. The number of times I did do it do not exceed 20 in three years time.

 

I feel being on (a high dose of) sertraline for all these years has caused for me to not be able to respond to therapy very well, because of my body's natural responses to people and situations being suppressed by the drug. It is like my instruments are all off kilter. The minute I started taking sertraline again after being off of it for three months in 2020 (not the exact literal minute, but a while (hour?) after I took my first dose of 50 mg), it felt like my brain was put in a blender, and I had a chemical feeling in my brain for months after that.

It felt like I was putting something in my body that just didn't belong there, like poisoning it. The chemical feeling has abated, or I have simply become used to it again.

But I want to be off this drug for good.

 

I will taper to 25 mg for now (in 2-4 weeks) from 26 and hold a little longer after that. I'd rather not stop tapering, because I think this drug is causing my body too much stress and I want to be off of it as soon as I can. That does not mean I will not hold for some time. I will not rush things, however much I'd like to be off of it. I feel stuck between a rock and a hard place. I might do a lot better WITHOUT any sertraline, but maybe I won't be able to taper it to 0 because it's not 'safe'. I know some people taper even when they are having (severe) withdrawal symptoms, only for the symptoms to become better once they were on a lower dose or a while after they took their last dose.

What I am meaning to say is: I don't know exactly what is doing me more harm: staying on this drug longer than necessary or tapering. I don't know how to get this point I am trying to make get across.

It could be I am doing this bad BECAUSE of being ON sertraline, or that tapering it and being on a lower dose actually has caused serotonin levels to plummet, as it apparently does in many people, even though depression isn't caused by low levels of serotonin in the first pace.

 

 

 

 

[Altostrata]

@Charleyhorse according to the earlier discussion in this thread, you cannot tell if you're better or worse while you taper. In other words, you don't seem to feel withdrawal symptoms from going off your drugs. 

 

Your other bad feelings are constant whether you take drugs or not or taper or not.

 

We offer peer support for tapering off drugs. You understand how to taper your drugs. We don't have the training to assist you in overcoming the bad feelings you've had all your life.

 

We can answer questions about tapering your drugs, but we cannot alleviate your bad feelings. You have mentioned thoughts of suicide. We must urge you to seek professional help for this, it's beyond our capacity as online peer support.

[Charleyhorse]

@Altostrata I feel worse; now, since november 2022 when I did a 10% drop at once, and overall, since coming off of sertraline in 2020 and going back on it.

 

So it could be: a. my original symptoms coming back but in a way I have not felt them before. which leads me to think that: b. they are in fact withdrawal symptoms, or even c. the drugs exacerbate and/or prolong the things I was feeling before.

But I cannot say anything with 100% certainty.

 

I feel the nuance of the point I am trying to make gets lost in translation. English is not my native tongue, we communicate via written messages and I often seem to have difficulty explaining things to people when things are nuanced. But it it is in my opinion not as black and white as what you have said in your response, that I simply "don't seem to feel withdrawal symptoms".

Worsening and prolongation of existing symptoms are known to be both a side effect of the drugs and of (protracted) withdrawal. And I am very much trying to find out which is which in my case.

 

Once again I'll say that I do not expect you to help me with things you are not qualified for to do. I do not expect you to alleviate my bad feelings. I know they are my own responsibility.

I am simply trying to understand whether the severity of the things I am feeling is withdrawal/side effects or not and whether tapering further will alleviate things.

From my viewpoint I can only do this by tapering further, not by holding until I get my SI under control. I think I will only be able to get things under control once the offending factor (the drug) is out of my system, because I think they are in fact making things worse. But, once again, I do not know for sure.

What I do know is once I was off of sertraline for some time, is that the confusion I had felt for years seemed to be gone. I could think kind of clear. Things had a clear beginning and end. That all evaporated when I went back on.

Now, this all might confuse you and I am sorry if it does. It is not my intention. Neither is it to create any drama or come across as erratic. I am just trying to navigate through these things as good as possible.

[Altostrata]

If you believe you have withdrawal symptoms from an earlier attempt to go off your drugs or your current taper, we recommend stopping tapering until those withdrawal symptoms go away.

 

If you got worse symptoms from reducing your drugs before, they may be withdrawal symptoms. Withdrawal symptoms may be psychological but they are usually accompanied by physical symptoms. If you got these symptoms shortly after a reduction, you likely have withdrawal symptoms. See this list of potential withdrawal symptoms
Dr. Joseph Glenmullen's withdrawal symptom checklist and discussions in the Symptoms and Self-Care forum.

 

From the way you describe your symptoms, we're not able to tell you whether you have withdrawal symptoms or not. Only you can figure this out.

[Charleyhorse]

Thanks for the response Altostrata.

I will check out the Glenmullen list and will browse the Symptoms and Self-Care forum some more to hopefully gain more clarity about certain symptoms.

As for the tapering, I am still in dubio to be honest. I do want to proceed the taper. Maybe go to 25 mg, since I am already almost there, and stay on that dose until springtime and meanwhile see if things get better/stay the same during that time.

 

[Altostrata]

6 hours ago, Charleyhorse said:

Maybe go to 25 mg, since I am already almost there, and stay on that dose until springtime and meanwhile see if things get better/stay the same during that time.

 

Yes, why don't you try this for a while.