jon1: Cipralex / Lexapro withdrawal - longer time with each taper?

[jon1]

4 minutes ago, Altostrata said:

 

If you want to get sleepy and relaxed, take a smaller dose.

 

Even tiny doses make me feel awful I'm afraid. It's not the tiredness that bothers me so much, but a soul-crushing depression. It's horrible.

 

As I say, I've always reacted like that to it, so it's just one of those supplements my body has never reacted well to. I make sure I get plenty of natural magnesium through foods though.

[catmama]

Hi @jon1 I’ve been reading thru your intro and I’m curious how your fatigue and exercise intolerance has been over the past several months. I too used to be very active, lifting in the gym 4-5 days/week, etc and it all came crashing down after a stressful event during WD that I’m still recovering from. Now I suffer daily from major fatigue and if I do anything more than a short walk, I’m feeling it the next day. It’s so heartbreaking. Is there hope that it gets better? 

[jon1]

Hey @catmama, so sorry to hear you’ve been suffering from exercise intolerance too. It really sucks, and it’s definitely been the worst of all my symptoms, as even when I’ve felt better in mood, I’m unable to take advantage of it, or had to limit what I do to prevent a crash.

 

I’m afraid I’m still going through it. I will tentatively say (as I’m petrified of tempting fate!), that occasionally I can do a little more and feel less intense effects. Near the beginning I’d be knocked out for almost a week after doing too much, now that appears to be reduced to around 3-4 days.

 

That said, I have learned to pace properly and so no longer challenge myself. I always felt like I should just push through it, but now I know that’s the exact opposite of what to do.

 

One thing I’ve noticed is that getting a few days rest in between exercise seems to be more important than doing little and often. If I try to do very short walks on consecutive days, I will suffer far more than if I’d taken one longer walk, then rested for a couple of days afterwards.

 

Luckily my doctor has been understanding, and has seen this before from people in withdrawal from SSRIs (a similar thing can happen to people who’ve quit benzodiazepines and alcohol too), and he believes the symptoms are due to our bodies being unable to mop up the stress hormones that are naturally released when we exercise. It takes a lot longer for them to be flushed out of our systems, causing the exhaustion and crash.

 

He also said that fatigue can be caused by the constant stress on the body, and low levels of the neurotransmitters that make us feel energetic and alert. It seems that SSRIs not only affect serotonin, but can dramatically alter other downstream chemicals, like dopamine, GABA and endorphins.

 

From what I’ve read online, it does appear that things do get better, it just takes a long time.

 

I wish I had more encouraging news - for both of us!

[jon1]

@catmama One thing I forgot to mention is I’ve found it incredibly helpful to use an electric bike. It means I can get around my local area without having to walk long distances or use public transport. As the bike is doing all the work it doesn’t affect my symptoms.

 

Psychologically it’s been quite freeing. I’ve only been using it over winter so far, so I’m looking forward to being able to go out for a ride in the spring sunshine.

[Ariel]

Hi @jon1

Just stopping by to say I so appreciate your presence here. 

Whenever I come across your posts I'm buoyed by your wisdom, insight, and compassion. 

Thank you for your generous contribution.

Healing vibes <3

Ariel

[Ariel]

Hi @jon1

How are you going?

 

I've been thinking about something you posted a while back. Don't remember which topic it was in. 

Regarding dopamine pathways and healing timelines, based on something your therapist had said about alcoholism PAWS.

 

While I harbor a certain aversion to theorizing about individual neurotransmitters (or neurotransmitter activity in general) in the pop-sci fashion of, "I've got dopamine issues," (my resistance stems from a concern that we oversimplify things and inadvertently reinforce the sort of primitive, unconstructive pseudo-reasoning that generates/perpetuates such subtly devious atrocities as the chemical imbalance myth, among other things) -- I dare say I feel like I'm dealing with significant dopamine/dopaminergic pathway dysfunction. (To emphasize, I know nothing about this and am articulating this figuratively more than anything else; not endorsing my own egregious abuse of pop-sci verbiage, let alone my flagrant hypocrisy here LOL) In other words, metaphorically or otherwise, based on some of the symptoms I struggle with, I suspect I may be dopamine deficient. 

 

Do you have any intel/hearsay from your therapist or other presumably reputable sources about the prospects of healing injured/underperforming (?!) dopaminergic pathways? 

Would appreciate any insights/thoughts. 

 

Healing vibes <3

Ariel

 

[jon1]

Hey @Ariel, thanks for checking in!

 

I'm still bumbling along, thanks; how about you?

 

The dopamine side of things is certainly very interesting, and I'm more convinced than ever that it has a much larger part to play in longer-term SSRI withdrawal, maybe even more so than serotonin.

 

I've been doing some research, and my therapist has been 'asking around', and we've come to the conclusion that - despite what the marketing suggests, SSRIs are very blunt tools. They certainly do their job at preventing serotonin reuptake, but they also have significant effects on other 'downstream' neurotransmitters like dopamine. 60 neurotransmitters have been identified by scientists, but there are thought to be hundreds more they haven't. How on earth can the drug companies possibly know what effects SSRIs have if their knowledge of the brain is so limited?

 

I guess an analogy is antibiotics. They work at killing the bad bugs, but kill many good ones in the process.

 

My therapist says many symptoms she sees from SSRI withdrawal directly correlate with PAWS from alcohol. Anhedonia, brain fog, tinnitus, blurry vision, sleep disturbances, poor memory, lack of concentration and more are all attributable to a low dopamine baseline. She says most of her SSRI patients have very similar symptoms to those recovering from alcohol misuse.

 

I can't remember if I posted it before, but the link below lists the symptoms of PAWS from alcohol (about halfway down the page). Other than cravings, there is almost no difference to SSRI withdrawal.

 

https://www.rehabguide.co.uk/post-acute-withdrawal-syndrome/

 

Dopamine baseline levels returning to normal is thought to be the final stage of healing after coming off alcohol; why it takes so long compared to other neurotransmitters, nobody seems sure. It often takes around two years but can be longer for many people.

 

My therapist also mentioned how individual physiology is a big factor too. For example, three alcoholics who all drink the same amount can have varying consequences later in life. One might have a severely damaged liver, the second might have heart or cancer issues, but the third may be relatively healthy but suffer from terrible PAWS, suggesting that some are more susceptible to alcohol's effects on the brain.

 

There's no reason to think similar logic shouldn't apply to SSRIs too, which are far more potent than alcohol over a much shorter time.

 

There's a huge amount of nonsense on the internet about dopamine. Especially the 'hacks' and supplements that claim to increase it. It shows a complete lack of understanding of how dopamine works, and forcing dopamine 'hits' will only lower baseline levels and make symptoms worse.

 

Time is the only healer, really. The brain has to find equilibrium again. It's a (very) slow process though.

 

Cheers!

 

Jon

[Ariel]

Hi @jon1

Thanks so much for your thoughtful reply! 

I was just responding to an earlier post of yours in another topic. 

 

5 minutes ago, jon1 said:

There's a huge amount of nonsense on the internet about dopamine. Especially the 'hacks' and supplements that claim to increase it. It shows a complete lack of understanding of how dopamine works, and forcing dopamine 'hits' will only lower baseline levels and make symptoms worse.

 

Yes, exactly, I think that's why I've felt so wary about bringing this up. I don't want to feed into the BS. Thanks for leveling with me. 

 

6 minutes ago, jon1 said:

I've been doing some research, and my therapist has been 'asking around', and we've come to the conclusion that - despite what the marketing suggests, SSRIs are very blunt tools. They certainly do their job at preventing serotonin reuptake, but they also have significant effects on other 'downstream' neurotransmitters like dopamine. 60 neurotransmitters have been identified by scientists, but there are thought to be hundreds more they haven't. How on earth can the drug companies possibly know what effects SSRIs have if their knowledge of the brain is so limited?

 

Couldn't agree more. There's so much more that we don't know compared to what we do know. I guess humility and profit-driven marketing don't necessarily go hand in hand!

 

8 minutes ago, jon1 said:

Dopamine baseline levels returning to normal is thought to be the final stage of healing after coming off alcohol; why it takes so long compared to other neurotransmitters, nobody seems sure. It often takes around two years but can be longer for many people.

 

I often wonder whether some of this could also be attributed to lifestyle. Anecdotal evidence (based on my no-doubt biased observations) might suggest that people who more actively participate in various "real-world" tasks/obligations in their lives, be it personally or professionally, benefit from a neuroplastic boost in establishing/healing certain pathways as a result from having to use them to learn/perform. I'm prone to believe that, as long as there's decent stress management/balance (i.e. no toxic stress, but rather "positive growth" stress related to constructive challenge), the brain might be able to rise to the occasion, so to speak (at least once having passed the acute, most intense stages of WD). This is neither here nor there, I'm just sort of musing/speculating aloud really. Based on what I read about neuroplasticity and things like habit formation, pathways are healing/created/renewed/enforced through practicing desired behavior, which has something to with dopaminergic activity (in addition to all other activity). Again, as with everything else in WD, it's a balance between holding, resting, and gently venturing forth, etc. 

 

I'm reminded of a particular success story that brings me a lot of hope. Are you familiar with Dan998's account of how he surprised himself by learning/teaching himself a new skill? All because he decided to challenge himself. I can't say I'm there yet, but #goals for sure.

 

I've also read experts expound on how one sets a goal first, and then motivation generates/follows/grows -- not necessarily the other way around, as one might tend to think. I have at times managed to implement this technique (since identifying/formulating micro-goals, no matter how small, and achieving them is said to increase/involve dopamine response), and it has been a positive, encouraging experience. Even something like making my bed in the morning can give me a boost, psychologically at the very least. (Not always attainable, haha, at the time of writing this I've been attempting the extraordinary feat of fulfilling a micro-goal of taking a shower and have failed to do so for longer than I care to admit... Now that I'm writing this out, I see that perhaps it's too big a chunk of a goal, not micro enough, and immediately after posting this I will break it down into much smaller, super-teeny-tiny goals/steps. Maybe that'll help!)

 

19 minutes ago, jon1 said:

Time is the only healer, really. The brain has to find equilibrium again. It's a (very) slow process though.

 

You're right. Always good to be reminded of this. Thank you. 

 

Thanks again for sharing all of the above!

Best wishes and healing vibes,

Ariel 

 

 

 

 

 

 

[jon1]

1 hour ago, Ariel said:

I often wonder whether some of this could also be attributed to lifestyle. Anecdotal evidence (based on my no-doubt biased observations) might suggest that people who more actively participate in various "real-world" tasks/obligations in their lives, be it personally or professionally, benefit from a neuroplastic boost in establishing/healing certain pathways as a result from having to use them to learn/perform. I'm prone to believe that, as long as there's decent stress management/balance (i.e. no toxic stress, but rather "positive growth" stress related to constructive challenge), the brain might be able to rise to the occasion, so to speak (at least once having passed the acute, most intense stages of WD). This is neither here nor there, I'm just sort of musing/speculating aloud really. Based on what I read about neuroplasticity and things like habit formation, pathways are healing/created/renewed/enforced through practicing desired behavior, which has something to with dopaminergic activity (in addition to all other activity). Again, as with everything else in WD, it's a balance between holding, resting, and gently venturing forth, etc. 

 

There's definitely something in this. There's certainly a good chance that 'fake it till you make it' does help to some extent.

 

I think the problem with SSRI withdrawal is that it operates in a pincer movement, and we're never dealing with one thing at a time. This makes it hard to approach recovery in a consistent way.

 

Using myself as an example, I've had significant issues with exercise causing a wave of symptoms. Even a relatively short walk can leave me in a terrible state. This has meant that doing dopamine-enhancing activities like walking, going to the gym, visiting friends, or going away on holidays has been impossible. I use an electic bike some of the time, which has helped psychologically, but I still can't go anywhere, even if I feel like it. 

 

My day job is as a music composer. And I haven't been able to write anything new for years.  I find I can do administrative tasks without too much difficulty, but the creative part of my brain has just shut down. I've tried to force it, but it makes me angry and frustrated

 

That said, there can be the occasional 'dirty window' (I love that phrase!), when I feel like playing the keyboard again for a brief period of time. I get mentally exhausted very quickly, though.

 

From what I've read, many people seem to reach a stage in recovery where they start to feel better in many areas quite quickly. It's like there's a point where some life-limiting symptoms start to improve, releasing extra bandwidth to begin to tackle others, triggering a positive feedback loop.

[Ariel]

52 minutes ago, jon1 said:

Using myself as an example, I've had significant issues with exercise causing a wave of symptoms. Even a relatively short walk can leave me in a terrible state. This has meant that doing dopamine-enhancing activities like walking, going to the gym, visiting friends, or going away on holidays has been impossible. I use an electic bike some of the time, which has helped psychologically, but I still can't go anywhere, even if I feel like it. 

 

I so hear you on this, Jon. Extreme fatigue is one of the most prominent, cumbersome, and long-lasting symptoms for me (and we are both post-escitalopram, by the way). It's very psychologically challenging to navigate the lifestyle limitations that arise as a result of fatigue. It can make me feel so powerless and trapped! I have to constantly be on guard to not lapse into learned helplessness, which is easier said than done when also contending with neuro-emotive apathy, etc. That's one of the reasons I've been so grateful for the sense of agency found in dietary interventions/eliminations, for example.

 

52 minutes ago, jon1 said:

My day job is as a music composer. And I haven't been able to write anything new for years.  I find I can do administrative tasks without too much difficulty, but the creative part of my brain has just shut down. I've tried to force it, but it makes me angry and frustrated

 

Completely relate to this. This is such a challenging one for me, too. In my pre-PAWS life I was an artist (multi-media). My whole life my experience and fundamental sense of self was rooted in creativity and being innately, effortlessly creative (this is not to speak of quality of end result but rather the process of being alive and approaching life/work/existence/experience from a creative, playful point of view, incl. a wide range of formats and modalities of communications and self-expression; it was simply my way of being in the world). In WD I have virtually no contact to that part of me, which I would never have thought possible. It truly feels like I'm a different person, like this whole huge chunk of my brain is simply missing or shut down. It's wild. Not even like, oh it's faintly there and comes and goes -- it's an experience of it just having vanished, without a trace. Even something like going to an art museum, which I've tried once, generated zero response in me, which was a bizarre experience. I used to routinely be moved to tears by a painting, a song, literature, film, poetry, dance, theater, music, etc. -- to a fault. And now suddenly, this experience of nothingness (it is sort of interesting, I suppose; I used to always wonder about those people who claimed to not care about or respond to art, that was a complete mystery to me! And now I get to sample it myself. Stranger still, I can find myself welling up watching sports!! That's not new per se, and I'm not complaining, it's just such an odd development for the art/creativity piece to be so markedly absent/dormant.) Made me think of the philosophy of aesthetic emotions, and how apparently/possibly, in my case, emotional blunting could be linked to if not directly blocking aesthetic experience, let alone pleasure (thoughts?). And yes, it can be painful (when I have enough emotions available to me to care about all that I'm unable to care about, haha!) and disorienting (cue: identity crisis). Especially since creative expression can provide such a cathartic outlet for working through difficult times. 

 

Thank you for sharing this, it's actually tremendously helpful to read that I'm not the only one going through this. I'm so sorry you're dealing with this as well! 

We're in this together <3

 

52 minutes ago, jon1 said:

That said, there can be the occasional 'dirty window' (I love that phrase!), when I feel like playing the keyboard again for a brief period of time. I get mentally exhausted very quickly, though.

 

Same. Very rare, but has indeed occurred a few times. 

Healing is happening! 

 

52 minutes ago, jon1 said:

From what I've read, many people seem to reach a stage in recovery where they start to feel better in many areas quite quickly. It's like there's a point where some life-limiting symptoms start to improve, releasing extra bandwidth to begin to tackle others, triggering a positive feedback loop.

 

Sounds good to me, where do I sign up??! 

Love the idea of a positive feedback loop where one gains momentum and healing starts to palpably build upon itself. 

I've consistently argued to myself (haha) that, logically, since the pattern of healing is non-linear, it stands to reason that it can accelerate and surprise us in desired vectors as well. 

It doesn't make sense that a non-linear pattern would necessarily consistently remain at the same gradual rate or only ever slow down; if it's truly unpredictable there should also be a certain probability that it will occasionally speed up or suddenly show an unusually significant gain. 

Fingers crossed!

 

[jon1]

3 hours ago, Ariel said:

I so hear you on this, Jon. Extreme fatigue is one of the most prominent, cumbersome, and long-lasting symptoms for me (and we are both post-escitalopram, by the way). It's very psychologically challenging to navigate the lifestyle limitations that arise as a result of fatigue. It can make me feel so powerless and trapped! I have to constantly be on guard to not lapse into learned helplessness, which is easier said than done when also contending with neuro-emotive apathy, etc. That's one of the reasons I've been so grateful for the sense of agency found in dietary interventions/eliminations, for example.

 

I'm so sorry you've been dealing with this too. Trapped really is the right word.

 

I've noticed that quite a few people who've taken escitalopram have reported this. I wondered whether it was confirmation bias, but problems with exercise do appear to be more common with the drug.

 

Looking back, when I was still on the drug, I had a higher amount of endurance. Pre-escitalopram, I'd probably manage an hour or so at the gym before feeling like I'd had enough, but when I was taking it, I could go for two hours or more without getting tired. It wasn't so much I had more energy, more than my body appeared to be able to keep going past its previous limits. After I took my final dose, my endurance levels steadily dropped over a period of about four months before moving into negative territory, causing exercise intolerance. So it does seem like escitalopram could have some effect on the body's energy systems.

 

3 hours ago, Ariel said:

Even something like going to an art museum, which I've tried once, generated zero response in me, which was a bizarre experience. I used to routinely be moved to tears by a painting, a song, literature, film, poetry, dance, theater, music, etc. -- to a fault. And now suddenly, this experience of nothingness (it is sort of interesting, I suppose; I used to always wonder about those people who claimed to not care about or respond to art, that was a complete mystery to me!

 

I know this feeling. My partner asked me what it was like, and I likened it to being in a Zorb (one of those big clear plastic balls you can run around in). I can see the world around me, but I'm cut off from it by this invisible outer shell.

 

3 hours ago, Ariel said:

Stranger still, I can find myself welling up watching sports!! That's not new per se, and I'm not complaining, it's just such an odd development for the art/creativity piece to be so markedly absent/dormant.)

 

Oh yes! I normally sit watching TV with a peculiar detachment. Sometimes, I can barely even remember what happened in a show (whereas previously I'd be the one to notice plot details nobody else did). But then, a completely random scene will make me well up. Bizarre.

 

3 hours ago, Ariel said:

It doesn't make sense that a non-linear pattern would necessarily consistently remain at the same gradual rate or only ever slow down; if it's truly unpredictable there should also be a certain probability that it will occasionally speed up or suddenly show an unusually significant gain. 

Fingers crossed!

 

Toes too!

[Aaron7]

Do you guys think that our emotional numbness / anhedonia and low dopamine is linked to PSSD?

 

[jon1]

1 minute ago, Aaron7 said:

Do you guys think that our emotional numbness / anhedonia and low dopamine is linked to PSSD?

 

It's entirely possible and even quite likely.

 

Dopamine and dopamine receptors are directly responsible for creating and maintaining an erection. Low dopamine can be responsible for physical as well as emotional numbness.

 

A common side effect for people who have to take dopamine medication to treat Parkinson's disease is an increased libido.

 

Sexual dysfunction is also a common symptom for people suffering from PAWS after quitting alcohol, which is also thought to be due to low dopamine.

 

So, it does seem like a logical conclusion that dopamine could be a significant factor in PSSD.

[jon1]

I’ve had a peculiar shift in my symptoms lately.

 

I’m over simplifying it a bit, but generally my ‘waves’ or probably more accurately, cycle of symptoms, usually last around 3-4 months. It starts with a few weeks of anxiety and agitation, followed by a few weeks of exhaustion and general ill feeling, then a few weeks of relative stability. All through this peripheral symptom, like tinnitus, mood swings and irritability, come and go as they please.

 

And of course all stages of the cycle are exacerbated or worsened by exercise or stress.

 

But recently it feels like my brain has pressed the ‘3x’ button and I’ve been through the same sequence far more rapidly, in about 4 weeks. It’s been so quick I’ve swung from one extreme to another in the course of a day.

 

I’ve no idea if this means anything - as the symptoms have been just as bad as before - but it’s certainly different.

[Ariel]

Hi @jon1

 

4 hours ago, jon1 said:

But recently it feels like my brain has pressed the ‘3x’ button and I’ve been through the same sequence far more rapidly, in about 4 weeks. It’s been so quick I’ve swung from one extreme to another in the course of a day.

 

I’ve no idea if this means anything - as the symptoms have been just as bad as before - but it’s certainly different.

 

Interesting, thanks for sharing your update!

 

I feel like I've experienced this before. A few months back, April-ish, it felt like the cycle had ramped up and there was a higher turnover. Symptoms were about the same intensity and still came in waves, what was different was that it felt like the symptoms/waves were being "processed" or moving through more swiftly. Better flow (faster transit time, to borrow a GI/digestion metaphor). At the time I admit I was rather enthused by the development and welcomed it as a sign of healing progress. I thought maybe I'd turned that famous proverbial corner everyone's on about in the success stories, haha 

 

Then things went back to how it had been before, with the heavy ongoing sludge and little variation, which I found very disappointing. 

 

Who knows what any of it means, though! What I took from it was that, a) I prefer the experience of things moving as opposed things not moving; b) it emphasized how desperately I long for this to be over, which is a yearning I have learned to not focus on in order to somewhat manage/cope/get through the day, and also it's right there beneath the surface at all times, doesn't take much to get in touch with that deep grief and despair; c) no way to know. 

 

Wishing you healing, peace, relief <3

Ariel

[jon1]

3 hours ago, Ariel said:

 

Who knows what any of it means, though! What I took from it was that, a) I prefer the experience of things moving as opposed things not moving; b) it emphasized how desperately I long for this to be over, which is a yearning I have learned to not focus on in order to somewhat manage/cope/get through the day, and also it's right there beneath the surface at all times, doesn't take much to get in touch with that deep grief and despair; c) no way to know. 

 

Thanks @Ariel.

 

Yes, it is tempting to think 'Is this the start of a change', but I've learnt enough over the years to see these things as a blip, rather than get excited.

 

At least it's a change from the usual slog, so there's that.