8 hours ago, skamen said:

Thank you, @Sophia, to post always the appropriated success story. Reading it gives me a hope.

You are so welcome ❤️

17 hours ago, Sophia said:

Hi Luke,

I am so sorry.. wish I could do something to make the pain go away for you… I don’t know I you have ever seen this story? He answers all the questions in the comments. He mentions:

“I would say I had about 4 years of really bad withdrawal. The worst of which were actually later in the process. I remember when I was about 3 years off the drugs I was having terrible terrible symptoms and I couldn't believe it was so bad after such a long time off the drugs. I guess the darkest hour is followed by dawn. What I later realised though was that the worse the symptoms were, the greater the recovery was when it finally did come”

https://www.survivingantidepressants.org/forums/topic/31009-3bbsgurkpog-great-success/

He said his last wave after 3+ years off was the worst he ever had.. ❤️‍🩹

Thank you for posting that.

I am familiar with that one. He was working and functioning for most of the process, and he used hard exercise to get through the "terrible terrible symptoms". Drinking alcohol at social events, saying it's important to "have a life" through withdrawal and so on.

It's good that there's precedent for being better and recovering over that timeframe, but I find it quite difficult to relate to people saying things like that.

It's a constant physical battle and every day is different in terms of the unpredictable struggles I will have to brute force my way through.

I should just keep in mind that recovery is possible over that kind of timeframe, and I was significantly harmed, so it shouldn't even be particularly surprising. I'm improving slowly, month to month, over a very long time. I believe that I'll be somewhat better on average in 6 months from now.

Still though, I can say the same about now compared to 6 months ago and it's still extremely difficult and I find life very hard, lonely and restricted, and pretty much everything is constantly stressful despite living a really minimal life, and pretty much all of that stress is trying to function on a base level through the illness. It is very difficult to be pleased that I'm somewhat better than 6 months ago on this basis, and really it just shows how ill I've been.

8 hours ago, LostPhil said:

Its frightening how much this stuff can damage people for so damn long. It really can shred peoples nervous systems and take ages to heal. By their nature these drugs are designed to change your nervous system and brain chemistry - that is the huge risk of them. And there seems to be no reason why some are badly damaged others quickly recover quite quickly - humans are damn complicated, unique machines. I'm 4 years off Mirt after 6 months on it, and still have symptoms - chills, tiredness and just feeling weirded out. Still haven't recovered full sensitivity.

Hang in there Luke - anything that can distract you is gold. The Internet was a life saver - YouTube, reddit, podcasts etc. Anything to help the hours slide by.

Thank you. It is good to hear from another long termer after short term use of mirtazapine. I'm aware of a few of us.

I'll probably ask some questions but I'll keep them to your thread.

Thank you everyone for the kind words.

39 minutes ago, Luke said:

It's good that there's precedent for being better and recovering over that timeframe, but I find it quite difficult to relate to people saying things like that.

Yeah I can imagine that.. 😔

I did read an article on outro it stated “In one landmark study, patients who had previously taken antidepressants showed 5-HT1A receptor down-regulation in 38 out of 40 brain regions analyzed, with an average of 29 months after stopping the medication (ranging from 8 to 60 months).

In simple terms, the brain changes caused by antidepressants were still detectable in nearly every brain region examined, lasting over two years on average after people stopped taking the medication.”

I can imagine that for some people the whole process can take longer, if 60 months after stopping the meds was found in some individuals.

It does not make it more frustrating of course.. I really hope and wish you have already been through the worst and things will only get better ❤️‍🩹

Does Your Brain Go Back to Normal After Antidepressants?...

Explore how the brain recovers after stopping antidepressants, the timeline for neuroplasticity, and what current research reveals about brain healing.

Edited April 25Apr 25 by Sophia

6 hours ago, Sophia said:

Yeah I can imagine that.. 😔

I did read an article on outro it stated “In one landmark study, patients who had previously taken antidepressants showed 5-HT1A receptor down-regulation in 38 out of 40 brain regions analyzed, with an average of 29 months after stopping the medication (ranging from 8 to 60 months).

In simple terms, the brain changes caused by antidepressants were still detectable in nearly every brain region examined, lasting over two years on average after people stopped taking the medication.”

I can imagine that for some people the whole process can take longer, if 60 months after stopping the meds was found in some individuals.

It does not make it more frustrating of course.. I really hope and wish you have already been through the worst and things will only get better ❤️‍🩹

Thank you. I'm past the worst state I've been in, definitely.

However, a very lengthy period of battling illness constantly and struggling to somewhat function at a low level while very much suffering a lot of the time is its own kind of hell really.

For example, today I've been exhausted since waking up and I've had a constant head pressure and low grade headache. I did go for a walk but that's it really. I'm just spending the whole weekend struggling through symptoms and stressing about functioning through next week with them.

It just swallows up my whole life really. Frankly I struggle to imagine "terrible, terrible symptoms" and "hard exercise" being possible.

Hi @Luke , you’re In my prayers. It is hard. But one day at a time.

15 hours ago, Sophia said:

In simple terms, the brain changes caused by antidepressants were still detectable in nearly every brain region examined, lasting over two years on average after people stopped taking the medication.”

Wow, that's amazing @Sophia . I had no idea. I didn't know such a study had been done. Surely that gives some heft to the argument of withdrawal for those professionals who don't believe it exists. I might have to take that to my next psych appointment.

And @Luke , I thought of you when I read this. It's from one of my recent heroes, Whitney Dafoe, who is bedridden (for decades) with severe chronic fatigue syndrome. I read his blog to learn how people in dire consequences cope and survive. Someone always does have it worse. I'm praying that God blesses you with peace, healing and comfort, Luke. If we care this much about you, He must care infinitely more. ❣️

And I’m really suffering. It’s so hard to live life without being able to do anything and not feeling a purpose. I feel this constant pain in my chest and this huge wall of things I want to do behind me that keeps growing.

Right now I feel like I’m just a sleeping blob and nothing more. I sleep and wake only to have to do med, food or other essential routines and then I go back to sleep. But I remind myself that this will change in time and that this is just a phase. I’m still a writer and a photographer and a headphone maker and beyond that I’m still Whitney. I’m still a man full of a whole world of love, courage, dreams and ideas. I will continue working on and creating whatever I can in the future. It will come back to me. But even now, unable to do anything but sleep, by simply existing, I am a ME/CFS activist.

You are a psych med withdrawal activist, Luke. You've been instrumental in helping many suffering souls.

xoxo Jamie

Thank you for the kind words.

I have direct experience of observing a family member with severe ME/CFS. It is hell.

Hi luke

I haven’t much been on anyone else’s pages for a while but wanted to come on today and read your updates.

I find your replies to me always hopeful and I wish I could give the same hope back.

It seems we all suffer so differently from these medications. I hope and pray for all of us every day that we will recover. I miss the person I was, and have a lot of grief for this, it sounds as though you do too. It’s hard not to grieve, I try to have a good cry and let it all out. Sometimes it helps.

I know you are a fair amount of time ahead of me, I don’t know what the future holds for my healing but I do believe Baylissa. She has spoken to 1000s of people at this point and she told me in our coaching session that even the most protracted people she has worked with have healed. She is adamant about that! And it’s a big claim to make if she doesn’t truly believe it.

Sending hope And prayers for healing for her all

Rosie x

Thank you for the kind words @Its-me-Rosie

Hey brother, sorry to hear about your recent goings. I haven’t been active much within the last two months so I haven’t gotten around to catching up to peoples threads. I too haven’t been doing too good, probably the worst I’ve been in a such a long time. I haven’t had a wave this bad, for this long in forever. Regardless, as soon as I started reading through your last few posts I immediately felt like you were speaking through me almost. I definitely relate to you a lot, and I know you don’t know that, and I know it’s so hard for us to feel like others understand or are going through exactly what we’re going through but trust me bro. I hear you, I feel you your pain, and I understand your words, because those words have been my own lately.

I’d say my journey has been more forgiving in the earlier days, you even noticed me having a lot of good periods, times of relief, and overall considering how brutal my overall withdrawal was, I was doing fairly well. Well it’s not like that anymore, and I relate heavily with that pain of knowing how far out you are and still trying to conform with that almost habitual need to still scour and look for success stories of others who have been through similar symptoms, similar timeframes and more just to keep clinging to some hope. It’s hard bro… Even now, for me, at this point in time in my “withdrawal” I am finding it harder and harder to find people this far out and this badly symptomatic and up and down.

For me, yes I’ll always admit that if I can look back at my entire injury timeline, yes - I’m recovering -I think. But when I REALLY look at it all, I feel like I’m worse now than where I was in acute? Were the symptoms more scary, more painful, and debilitated me more? Yes. It was brutal. I wouldn’t wish it on my worst enemy, I couldn’t even fathom the body could produce such pain. But I was functional, had my sexual functions, wasn’t riddled with MCAS-like episodes, fibromyalgia-like pain all over my body that flares up due to exercise, I could hold my pee in, my genitals functioned correctly, I could sleep, allergic reactions, and more!

The longer my timeline continues, the further out I became disordered at my past, and my entire situation just continues changing, worsening. I’m left in this broken body, whilst I don’t consider myself disabled or crippled anymore, I’m living a life day in day out not realising what symptom is hitting today, can I do this? Do that? I’m so glad I’m not fighting daily with suicidal ideation and at one point I considered that to being my worst symptom. Now it’s gone, my worst symptom just keeps changing and jumping to something different. I feel like a 80 year old autoimmune compromised man, living each day in a body that’s playing tricks on him. One day I feel a little better, but never asymptomatic, then the next it’s back to a usual list of symptoms, then the next day some old symptom re-emerges, then fades, then comes back, then a new set of symptoms occur. And as time goes on, these newer symptoms just morph into my daily and chronic list of “illnesses” plaguing me.

All the while longer, I felt heard, seen and connected with individuals in my earlier days of withdrawal because my symptoms whilst chaotic and intense and lengthy, a few had all of them as well. Now? Shit, I’ve got every single symptom, mimicking every single disease and disorder under the sun, it’s ridiculous. Good luck getting support off family or friends let alone medical professionals when you start listing 60+ symptoms, that mimic a whole book of medical conditions. No one takes me seriously, no one. The only people who get me are on here.

My nervous system just literally does its own thing everyday and I’m along for the ride.

Just like you Luke, I’m sick of the fight man, I hate seeing others doing so much better, especially those who were pretty damaged like me, seeing posts or success stories letting people know their so much better, healed and thriving.

So yeah, I like many on here completely feel you mate. You’ve had it hard, and you’re well within your rights to be fed up, because so am I. I wanna be healed, I want my life back, I want my d**k to work again. I don’t want doctors continually telling me nothing is wrong with me when I’m living like a immunocompromised elderly man. I’ve just turned 30 and my partner is fed up, my kids need me. I need to focus on work, life, and thriving, not rotting away for almost 3 years crippled by a stupid antidepressant.

19 hours ago, Jack said:

I’m left in this broken body, whilst I don’t consider myself disabled or crippled anymore, I’m living a life day in day out not realising what symptom is hitting today, can I do this? Do that?

I relate heavily to this, with a side order of always feeling exhausted and run down as a near-constant symptom.

I'm sorry to hear that you've been struggling a lot in recent months.

If I look at back at 2026 so far, I have improved, it's just still hard. I hope that in time you begin to see more consistent improvements again, I see that you're coming up to 2 years, many, but not all, begin to notice steady improvement some time between 2-3 years off. I hope that you do soon.

Thank you for the kind words, I do appreciate it.

On 4/25/2026 at 11:14 AM, Luke said:

It is very difficult to be pleased that I'm somewhat better than 6 months ago on this basis, and really it just shows how ill I've been.

Hello, @Luke

Yes, I completely understand what you are saying, I have this feeling too.

But you can also look at it the other way around: your future is to heal. You will never be sick from withdrawal again. It will be behind you. Imagine how you will be then on that day.

On top of that, even if your progress has been slow so far, it can take a decisive turn in a very short time, with a very rapid improvement over a short time. That’s a possibility; some people have experienced it.

Certainly you are an example to many in your fortitude and resilience ; I hope you are aware of this. And thank you for guiding us through this forum.

Best wishes. 💫

On 5/6/2026 at 3:07 PM, poulette38 said:

Yes, I completely understand what you are saying, I have this feeling too.

If you're having this feeling at 6-7 months in, that's good progress. I just want to emphasise that this has not been months for me, I was really severe for a long time. I was worsening at that timeframe, not getting better.

I'm not that severe anymore, thankfully, but I have to emphasise the profound affect this has had on my life after several years.

On 5/6/2026 at 3:07 PM, poulette38 said:

But you can also look at it the other way around: your future is to heal. You will never be sick from withdrawal again. It will be behind you. Imagine how you will be then on that day.

Sure, but it will still have happened, the effects of it on my health and life will all still be there. Being very sick, very sedentary and the various other physical effects for several years has a permanent influence on your health.

Likewise, many other aspects of my life are altered.

However, yes, it is likely that I will eventually recover to a reasonable degree.

On 5/6/2026 at 3:07 PM, poulette38 said:

On top of that, even if your progress has been slow so far, it can take a decisive turn in a very short time, with a very rapid improvement over a short time. That’s a possibility; some people have experienced it.

You are also right that progress could accelerate.

On 5/6/2026 at 3:07 PM, poulette38 said:

Certainly you are an example to many in your fortitude and resilience ; I hope you are aware of this. And thank you for guiding us through this forum.

Best wishes. 💫

Thank you for your kind words.

4 hours ago, Luke said:

If you're having this feeling at 6-7 months in, that's good progress. I just want to emphasise that this has not been months for me, I was really severe for a long time. I was worsening at that timeframe, not getting better.

I'm not that severe anymore, thankfully, but I have to emphasise the profound affect this has had on my life after several years.

Sure, but it will still have happened, the effects of it on my health and life will all still be there. Being very sick, very sedentary and the various other physical effects for several years has a permanent influence on your health.

Likewise, many other aspects of my life are altered.

However, yes, it is likely that I will eventually recover to a reasonable degree.

You are also right that progress could accelerate.

Thank you for your kind words.

What should you think of a state that is getting worse, in your opinion? Since you say you are better now? Did it was before a gradually better state, or did you improve over a short period of time after this?

It’s heartbreaking to hear that from a young person like you. How can one so innocently prescribe this to young people in perfect health and make them endure such suffering for so long. It’s criminal.

Even though there was a profound negative impact on your life afterwards (and we all understand that), wasn’t there something positive about it? I am convinced that the disease can bring some positive things, however small this may be.

That’s right, the influence it has on our mental and physical health is very real. However, I don’t think the impact is that permanent. Some people report a real return to complete physical and mental health. Of course, they have been very ill for a long time, but it did not last. The human body has a great capacity for recovery. Angie Peacock made a video with a completely cured young woman who found herself in a wheelchair for years.

Edited May 7May 7 by poulette38

10 hours ago, poulette38 said:

What should you think of a state that is getting worse, in your opinion? Since you say you are better now? Did it was before a gradually better state, or did you improve over a short period of time after this?

I was 6-7 months off 2 and a half years ago. I did not improve in a short period of time. I spent about 2 years really quite impaired, disabled and very sick whilst totally unable to function and needing a lot of care from my parents, in my 30s.

I've then spent the third year mostly pretty sick and just about functioning through it, some of the time, but often still not and unable to support myself in various ways.

Only in the last couple of months am I able to function most (but not all) of the time, and I am still often quite physically unwell and experiencing regular difficulties.

You said you had an understanding of being sick and impaired for years based on already being better than you are at 6 months off. What should I think about that statement?

10 hours ago, poulette38 said:

Even though there was a profound negative impact on your life afterwards (and we all understand that), wasn’t there something positive about it? I am convinced that the disease can bring some positive things, however small this may be.

What would be positive about it?

10 hours ago, poulette38 said:

That’s right, the influence it has on our mental and physical health is very real. However, I don’t think the impact is that permanent. Some people report a real return to complete physical and mental health. Of course, they have been very ill for a long time, but it did not last. The human body has a great capacity for recovery. Angie Peacock made a video with a completely cured young woman who found herself in a wheelchair for years.

If you are in a wheelchair for years, that has an impact on your health in the future compared to if you spent those years not sitting down and barely moving.

5 hours ago, Luke said:

I was 6-7 months off 2 and a half years ago. I did not improve in a short period of time. I spent about 2 years really quite impaired, disabled and very sick whilst totally unable to function and needing a lot of care from my parents, in my 30s.

I'm really sorry to read this. 🙁

So your condition was very bad for a long time before improving over a few months recently... it’s crazy how the recovery process is different from one person to another. Some people have a windows and waves recovery...

5 hours ago, Luke said:

You said you had an understanding of being sick and impaired for years based on already being better than you are at 6 months off. What should I think about that statement?

No, sorry, maybe my English isn’t as clear as I would like... actually I was sympathetic when you said "I’ve been sick for a long time so telling me that I’m doing better than 6 months ago only reminds me more of how I’ve been sick for much longer". I don’t have the same experience as you on this journey, but even if we improve, it’s still painful to see what we’ve been through before. Scary. That’s what I meant.

5 hours ago, Luke said:

What would be positive about it?

Not in the sense that it’s a positive situation, obviously far from it, but having to live so long thanks to one’s soul and will only (since everything else is dysfunctional) allows you to question many things, don’t you think? We see life differently after such a traumatic experience I imagine.

Thanks to your journey, you can help us on this forum. That’s a positive point, isn’t it?

There are people right now who ignore everything we learn on this forum and who are still manipulated by inhuman doctors who steal their lives by keeping them on medication. This is not your case and you are gradually regaining your life, not continuing to lose it. Another positive point.

So yes, there are also all the lucky ones who will never fall into this huge drug trap, but that doesn’t mean they don’t have other huge problems to deal with, nor that they will never be confronted with them later. We would all have liked to avoid all this suffering but it’s impossible to go back. We do like most people on this planet with their problems, we face them as best we can. We have incredible strength to do this, even if no one is there to applaud us. You will realize once cured how courageous you have been and you will be proud of it. And that will be a positive point at that time.

There are people who have permanent illnesses until their death (and even then, in some very serious cases, we can see spontaneous healings); for us, it’s just a recalibration that we’re waiting for. It won’t last 10 years. It’s reassuring to say that to oneself.

And when you are cured, do you imagine how strong you will be able to face life? Another positive point, right? I’m sure we can find many more.

5 hours ago, Luke said:

If you are in a wheelchair for years, that has an impact on your health in the future compared to if you spent those years not sitting down and barely moving.

Yes, unfortunately. But it’s still better than being in a wheelchair for life. Personally, I have a long-time friend who has always been in a wheelchair and she is fighting to be able to walk again one day, with very restrictive physical rehabilitation. So yes, she is extremely lucky to have all her mental abilities. But she has never complained about her physical condition. Once in middle school, I was complaining about having to go to a sports session (even though I like sports by the way). She told me "I would like so much to be able to do it".

36 minutes ago, poulette38 said:

I'm really sorry to read this. 🙁

So your condition was very bad for a long time before improving over a few months recently... it’s crazy how the recovery process is different from one person to another. Some people have a windows and waves recovery...

I have been improving, very slowly since somewhere in the middle of 2025, but with major setbacks and still extremely ill.

Only in recent months have the improvements really started to add up.

If you go to the link in my signature, you will see my story from the past forum, along with significant numbers of people over the years telling me that actually my situation is not bad, before themselves going on to recover in a far shorter time.

36 minutes ago, poulette38 said:

We see life differently after such a traumatic experience I imagine.

Well, objectively it is worse in every measurable way.

Subjectively, I like being alive far less.

Life is different- it's much worse and will likely always be worse than if I hadn't become sick in the first place.

36 minutes ago, poulette38 said:

Thanks to your journey, you can help us on this forum. That’s a positive point, isn’t it?

For others, yes.

36 minutes ago, poulette38 said:

This is not your case and you are gradually regaining your life, not continuing to lose it. Another positive point.

I wouldn't call eventually not being ill again (if it happens) a positive to having been ill for years. It's just something extremely negative not happening forever.

36 minutes ago, poulette38 said:

You will realize once cured how courageous you have been and you will be proud of it. And that will be a positive point at that time.

I'm not convinced that I will. I have not handled this well at all. Given the choice of surviving this, or dying at any point in the first years, I would have chosen the second option. If I went back, I still would.

I also think that saying that the good part about being sick for years, unable to work for years, being alone for years, losing a fortune financially, missing out on all kinds of things is that I'll be proud of myself is just not being objective about things really.

What do I have to be proud of? This drug has turned me into a total loser, made me worse as a person in every single way and I absolutely hate myself, to be completely honest.

36 minutes ago, poulette38 said:

And when you are cured, do you imagine how strong you will be able to face life? Another positive point, right? I’m sure we can find many more.

This may be true. It may also end up not being true.

36 minutes ago, poulette38 said:

Yes, unfortunately. But it’s still better than being in a wheelchair for life.

Sure, but the discussion was around denial that this significantly negatively impacts my future health.

Of course it would be better if I recovered than if I did not.

I realise that I seem as though I'm simply being overly negative, but I was being told that soon both me and my life would be better than before I took the drug literally years ago.

1 hour ago, Luke said:

people over the years telling me that actually my situation is not bad, before themselves going on to recover in a far shorter time.

How can they tell you that your situation was not so bad? Do they know you to say that? Or was it in comparison to theirs? Good for them if they recovered very quickly. No one can predict this, even doctors don’t even recognize what we go through, so how could they predict recovery? There’s no point in comparing ourselves to others, since the only real thing is that we all heal over time. But I understand that you are telling yourself this, it is legitimate. We would all like to heal very quickly... it’s deeply unfair to have to suffer for so long.

2 hours ago, Luke said:

For others, yes.

Not for you, @Luke ? 😢

2 hours ago, Luke said:

I wouldn't call eventually not being ill again (if it happens) a positive to having been ill for years. It's just something extremely negative not happening forever.

Yet it is, objectively.

2 hours ago, Luke said:

I'm not convinced that I will.

One day you will be. And yes, you handled it perfectly, because you survived an inhuman situation. With the resources you had. In any case, we’re all very happy to have you here.

2 hours ago, Luke said:

I also think that saying that the good part about being sick for years, unable to work for years, being alone for years, losing a fortune financially, missing out on all kinds of things is that I'll be proud of myself is just not being objective about things really.

I don’t agree. Could you do better than that in the state you were in? Surely not, I imagine. You have suffered the effects of medication, you are not responsible for this. Don’t be so hard on yourself. Staying alive is a great quality, and that’s objective. And you did it. Life is priceless. Everything else doesn’t matter. That’s just my point of view.

On the other hand, I can understand. When you’re young, you want to live your life fully and in perfect health, not in survival mode every day... 😔

2 hours ago, Luke said:

What do I have to be proud of?

To be alive. And to be the person you are. Who is certainly not a complete failure as you say.

2 hours ago, Luke said:

made me worse as a person in every single way

I’m not so sure. Being a moderator on a forum, not everyone can do it.

2 hours ago, Luke said:

Of course it would be better if I recovered than if I did not.

Have you seen any cases that haven’t healed? From what I understand, everyone is healing.

2 hours ago, Luke said:

I realise that I seem as though I'm simply being overly negative, but I was being told that soon both me and my life would be better than before I took the drug literally years ago.

It’s understandable, Luke. Don’t give up. I hope recovery comes soon for you and a better future. 😔 Things can change very quickly.

14 hours ago, poulette38 said:

Not for you, @Luke ? 😢

Running the forum is the right thing to do, to help people and try to make change and prevent others from coming to harm.

It doesn't do anything to change the harm done to me.

14 hours ago, poulette38 said:

Yet it is, objectively.

No, objectively, being ill for several years with a large range of tangible negative consequences is bad.

Rationalising it and stating that it could be worse because recovery could be even longer or incomplete is by definition being subjective.

14 hours ago, poulette38 said:

Staying alive is a great quality, and that’s objective.

Again, this is by definition subjective. We're talking about my hypothetical potential feelings if I recover. That could not be further from objectivity. Likewise, being alive is not by default a good thing.

14 hours ago, poulette38 said:

Life is priceless. Everything else doesn’t matter. That’s just my point of view.

A point of view based on how you perceive something is by definition subjective and not objective. I can assure you that in fact, if you live a life of significant suffering for years, then things other than just being happy to be alive do matter.

14 hours ago, poulette38 said:

On the other hand, I can understand. When you’re young, you want to live your life fully and in perfect health, not in survival mode every day... 😔

It's nothing to do with youth. The state I have lived in, for several years, is intolerable and inhumane. This would be true no matter my age.

14 hours ago, poulette38 said:

To be alive. And to be the person you are. Who is certainly not a complete failure as you say.

Being alive isn't a source of pride, all people are alive for a time.

As I said, I am by far a worse person in pretty much every conceivable way than pre-Mirtazapine. I could list them all out, and we could debate it, but what's the point?

Being a moderator of an internet forum doesn't change that. You have no experience of who I am now beyond some text-based posts on the internet, and no experience at all of who I was pre-Mirtazapine.

14 hours ago, poulette38 said:

Have you seen any cases that haven’t healed? From what I understand, everyone is healing.

Yes.

14 hours ago, poulette38 said:

It’s understandable, Luke. Don’t give up. I hope recovery comes soon for you and a better future. 😔 Things can change very quickly.

I am recovering. None of that changes what I'm saying. I appreciate what you're saying and that you're trying to help, but struggling with being this sick for years isn't some kind of youthful impatience for everything to be amazing. I have heard all of this before, much of it literally years ago- that soon life will be worth living and is actually already worth living and I shouldn't think that it isn't. The people saying these things have always been saying it while recovering much quicker, and seeing positive signs of recovery very early on.

To be clear, at 7 months off, I was taken to hospital because I was passing out mid sentence whilst trying to speak and could barely stand. A year after that, episodes where I could barely walk and talk were still happening for up to a week at a time.

I really don't know what I would have to do to emphasise the significant negative impact this has had on me and my life.

8 minutes ago, Luke said:

I really don't know what I would have to do to emphasise the significant negative impact this has had on me and my life.

Dear Luke,

I read your comment and I feel your pain. Its been a very lonely and painful road you have been on for so long. Your feelings are valid and you are allowed to grief, to be angry and to lose trust and optimism. Everybody would, in the situation you are in.

I hope you can find some peace in the sad fact that you will never be able for people to completely imagine or understand your experience. YOU KNOW what YOU have endured. And only YOU can show true compassion and understanding for yourself. I hope you are being kind and compassionate towards yourself. You never deserved this and its very unfair you suffer for so long from a medication you took quite shortly.

Keep going, you are very strong❤️‍🩹

Poulette did trgger me to watch the video of the lady in the weelchair. I must say it was really inspiring to hear. She talks about losing optimism and just enduring torture without knowing where it will end. How she realised no one or nothing would safe her and how toxic positivity made her feel cynical. When she talks now, you see the life energy back in her eyes and body.

She used to be an athlete and could not move her arms anymore put a spoon in her mouth.. (see link below if you are interested).

Anyhow, I wanted to say I see you and I hope you see huge improvements soon. You deserve it! ❤️‍🩹❤️‍🩹

4 hours ago, Luke said:

Running the forum is the right thing to do, to help people and try to make change and prevent others from coming to harm.

It doesn't do anything to change the harm done to me.

Of course Luke It's true. 😔 All this should never have happened to you. What a waste.

4 hours ago, Luke said:

Rationalising it and stating that it could be worse because recovery could be even longer or incomplete is by definition being subjective.

Yes, you are completely right, but that’s not what I meant, I don’t rationalize it at all. It happened and it’s terrible. What I meant is that some people suffer for years or even their whole life from an incurable disease which WD is not one of them.

4 hours ago, Luke said:

It's nothing to do with youth. The state I have lived in, for several years, is intolerable and inhumane. This would be true no matter my age.

You’re right, no one should go through that, regardless of their age. But there is a difference between someone who has lived a happy life before that someone who must build everything in total uncertainty. Moreover, young people are not proportionally in the majority in this situation. Just take an average of the ages from written or oral success stories; I have really seen very few young people. After all, just because they’re not on the internet doesn’t mean they don’t exist, but still, proportionally, I think it does. (Moreover if they are young, they should go online more easily. )

5 hours ago, Luke said:

Being alive isn't a source of pride, all people are alive for a time.

Yes, and they should be extremely grateful for that. Unfortunately, it is often only in illness that they become aware of it. But it’s my Christian vision of life, I respect yours.

5 hours ago, Luke said:

Being a moderator of an internet forum doesn't change that. You have no experience of who I am now beyond some text-based posts on the internet, and no experience at all of who I was pre-Mirtazapine.

No @Luke , I don’t know you, and I didn’t pretend otherwise. I wouldn’t dare, it’s impolite. What I see is that you are a forum moderator and that you want to help others, and what I’m saying is that on this point it certainly hasn’t made you worse, less human. You could also have given up on others and continued your life in your own area, but you didn’t. So I thank you for that. And I’m sure I’m not the only one.

5 hours ago, Luke said:

Yes.

So it’s really very sad.

5 hours ago, Luke said:

To be clear, at 7 months off, I was taken to hospital because I was passing out mid sentence whilst trying to speak and could barely stand. A year after that, episodes where I could barely walk and talk were still happening for up to a week at a time.

I really don't know what I would have to do to emphasise the significant negative impact this has had on me and my life.

I’m sorry to hear that, it’s really terrifying and heart-wrenching. 😔 You have obviously suffered a lot for a very long time.

I felt that you weren’t well, that’s why I wanted to talk with you. I didn’t even know that some people didn’t heal.

I really hope to read your success story one day, and all that you can tell there.

@Luke I hear you. During my own withdrawal ordeal, there were mornings I woke up disappointed that I was still alive. While no two experiences are the same, I think I understand at least some of what you’re describing.

And for what it’s worth, I appreciate that you continue moderating and helping people here despite everything you are currently going through.

6 hours ago, Sophia said:

She used to be an athlete and could not move her arms anymore put a spoon in her mouth.. (see link below if you are interested).

Just so we're all clear, she's still taking psychiatric medication- she's on amitriptyline.

All of their discussion is about how she's "4 years off" and living a full life, but she's not "off".

It's great that she's recovered and is able to live a good life though.

@Sophia thank you for the kind words. I'm struggling today. There are encouraging signs but I just keep suffering and suffering. Maybe it will end soon. Who knows.

I really struggle to find stories of people who spend a lot of their days struggling this much past 3 years off.

1 hour ago, poulette38 said:

Of course Luke It's true. 😔 All this should never have happened to you. What a waste.

Yes, you are completely right, but that’s not what I meant, I don’t rationalize it at all. It happened and it’s terrible. What I meant is that some people suffer for years or even their whole life from an incurable disease which WD is not one of them.

Sure, and that's a bad thing without upsides.

1 hour ago, poulette38 said:

Yes, and they should be extremely grateful for that. Unfortunately, it is often only in illness that they become aware of it. But it’s my Christian vision of life, I respect yours.

An animal would not be allowed to suffer for years.

1 hour ago, poulette38 said:

No @Luke , I don’t know you, and I didn’t pretend otherwise. I wouldn’t dare, it’s impolite. What I see is that you are a forum moderator and that you want to help others, and what I’m saying is that on this point it certainly hasn’t made you worse, less human. You could also have given up on others and continued your life in your own area, but you didn’t. So I thank you for that. And I’m sure I’m not the only one.

I'm glad you think I'm making a good difference.

1 hour ago, poulette38 said:

I’m sorry to hear that, it’s really terrifying and heart-wrenching. 😔 You have obviously suffered a lot for a very long time.

I felt that you weren’t well, that’s why I wanted to talk with you. I didn’t even know that some people didn’t heal.

Thank you. I'm sorry that I am negative.

30 minutes ago, RachelSusan said:

@Luke I hear you. During my own withdrawal ordeal, there were mornings I woke up disappointed that I was still alive. While no two experiences are the same, I think I understand at least some of what you’re describing.

And for what it’s worth, I appreciate that you continue moderating and helping people here despite everything you are currently going through.

Thanks, unfortunately I feel that the majority of days past 3 years out.

I appreciate you giving your time as a mentor and helping others as much as you can.

So far, I've found that nothing I've tried has made any difference to my symptoms, positively or negatively. If anyone has any thoughts, feel free to share.

I will say though, that I am not going to try any kind of special diet without compelling evidence it will help, and by evidence I don't mean one example of someone who tried it whilst not severe and not off for years.

If I do not eat regularly, and I allow myself to become hungry, I start feeling much worse, rapidly. Overeating is the only thing I've discovered that can sometimes take the edge off of symptoms, so please keep that in mind before suggesting that I cut out all carbs or other similar dietary strategies that would likely have me bedridden.

I've tried numerous supplements, none have done anything, most of the usual recommended ones, various types of magnesium, various multi-vitamins, various vitamins and minerals individually.

Doing nothing doesn't help. Doing things doesn't either. Getting outdoors for short walks is likely good to stop my health deteriorating even more, but it doesn't help symptoms nor help me recover.

I don't drink alcohol, smoke, take any OTC drugs like painkillers or anything. I can tolerate caffeine, but I only have a cup of coffee after breakfast. Occasionally another late morning, but rarely. I have gone periods with 0 caffeine- no difference.

I feel exhausted, run down, off, depressed and stressed almost constantly, as a baseline. Ontop of that, I have other symptoms that regularly crop up and go away. Very occasionally, I have days or parts of days where all of the "baseline" feelings described above are much milder (but not gone), but they're uncommon.

I try to keep bedtime fairly consistent, I'm not perfect at this, and if I go to sleep too late, it affects my sleep quality. If I go to bed early, it's not as bad but still poor.

Life is a constant, miserable struggle to push through all of this, with plenty of stress trying to cope, for example, if I need to get up in the morning, this is always very difficult. I rarely plan anything, because I almost always regret it if I do. I'm desperately unhappy and I do not consider this life to have been worth surviving years of this for. There are no upsides, I do not like living this way at all. If it wouldn't harm anyone to stop, I would.