Unfortunately, the dirty window didn't last long, I've had some quite hard days, and then now some symptoms I've not had for a VERY long time have flared back up, plus an entirely new one has appeared.

 

I won't even bother listing them, it doesn't matter. What matters is I'm very much stuck in this for a long time, and I can significantly worsen in unpredictable ways that are difficult to adapt around at any time. It's very demoralising, and I struggle to find stories that I find relatable now.

 

6 hours ago, Lighty said:

hey luke how you been doing ?

i was thinking abou you and was wondering if i could assist you by giving you an interest to spend time on, or you have your distractions already perhaps ?

 

As above really.

 

Thank you for your kind thoughts. My time is fairly full just trying to survive and function as best I can really. What do you propose?

 

12 minutes ago, Luke said:

Unfortunately, the dirty window didn't last long, I've had some quite hard days, and then now some symptoms I've not had for a VERY long time have flared back up, plus an entirely new one has appeared.

 

I won't even bother listing them, it doesn't matter. What matters is I'm very much stuck in this for a long time, and I can significantly worsen in unpredictable ways that are difficult to adapt around at any time. It's very demoralising, and I struggle to find stories that I find relatable now.

 

 

As above really.

 

Thank you for your kind thoughts. My time is fairly full just trying to survive and function as best I can really. What do you propose?

 

Oh Luke this is so sad to hear. Sorry you are still in this pit of hell. I would dig you out if I could. Sending you all my care xx

Oh, @Luke, I am so sorry. What a Hell...

3 hours ago, Luke said:

Thank you for your kind thoughts. My time is fairly full just trying to survive and function as best I can really. What do you propose?

im still not sure exactly what state you are on, maybe not when you feel like you are losing it completely.

 

there is a niche of mystery puzzle visual novels I really liked that i decided to recheck, you have quite a bit of those games and i like them very much, playing through "Shuten Order" now.

zero escape, ace attorney (most of the games more goofy and less serious), ghost trick, ai the somnium files, and the list goes on.

obviously not when you are doing really really bad but maybe when you are better, if you could occupy yourself with it, there are a lot of games in that style.

Edited February 10Feb 10 by Lighty
correcting.

I am sorry you are struggling Luke 😢. 

 

That makes two of us at the moment. 

 

Take care and we all have to get through this. 😞🙏

@Lighty Thank you for the suggestions. I'm trying to keep myself occupied as much as I can.

 

@Sminismoni @skamen @Tracey thank you for the kind words.

You got this @Luke you have been through hell and done so well to get where you are now. Keep your head up bro good times are coming. 

 

❤️👌👊

Hi Luke, I am sorry to hear that you are not doing well currently and have new symptoms popping up too. Do what you can to remain positive. I know it can feel unlikely atm but you can and will have a sunny window soon, maybe even with a rainbow. I am sending you positive thoughts/well wishes/prayers and the warmth and brightness of the sunshine we actually have over here today in the Chicagoland area.

 

Take care, my friend.

It's difficult to find people who are 3 years entirely off of medications in support groups, they exist, but it's uncommon. Look at the membership here- a very, very high proportion are either tapering or 1-2 years off.

 

This is because it's uncommon to be struggling to a significant degree at 3 years off. I'm nearly 2 years and 10 months off, so not far. If I read stories of people who were still in this this far out, they are expressing disappointment at "having a wave this far out". My experience is constant. It does not end. Even the better periods are symptomatic and difficult.

 

The symptoms shift, so I cannot even plan a life adapted around them, because I am still on a rollercoaster of physical effects. Sometimes I might be a zombie all day and struggle to function, sometimes I might be wired but tired and have less trouble functioning but feel extremely ill, sometimes my legs might be weak and tight and I struggle with mobility, I have managed to just about avoid having any bathroom-related accidents for a while, but it is a constant, looming issue to stress about and it's been close a few times recently, sometimes I might have an all-day headache, sometimes I might have an all day feeling like an allergic reaction and itch all over and struggle to think clearly, sometimes I might feel constantly suicidal or depressed.

 

I usually wake up at 4am or thereabouts, sometimes I go back to sleep, sometimes I don't, it's rarely restful and usually nightmare-ridden.

 

Most days are some sort of combination of the above. I've barely had anxiety for most of this, just a deep sense of physical stress that comes and goes, but I've started waking with anxiety a couple of steps below a panic attack lately.

 

I also have sexual dysfunction ontop the the issues using the bathroom, and this has now been the case for much of my 30s, the decade people usually find partners and have families if they haven't done so already, so that's another way life is just really limited. I live a limited, mundane life of mostly fighting through symptoms while living with my parents in my 30s. My career is badly impacted, my finances are badly impacted, I have lost a large number of friends, my physical health is absolutely wrecked from years of stress, being very sedentary, barely sleeping etc.

 

It has taken years of fighting to get to this point and the "reward" or outcome of that is not worth it at all.

Hi @Luke I'm so sorry to hear of what you've been through and the daily symptoms which seem very incapacitating. I can relate to and understand some of what you describe but not the draining relentless daily suffering which you think will stretch well into the future. I feel powerless to offer any advice, but I know Angie Peacock offers online PAWS support groups which may be worth trying.

 

Be kind and gentle with yourself and thank you once again for this wonderful online forum you've created. You have helped so many by doing so.  I truly hope you start to see glimmers of windows in the near future 😢 

1 hour ago, Luke said:

It's difficult to find people who are 3 years entirely off of medications in support groups, they exist, but it's uncommon. Look at the membership here- a very, very high proportion are either tapering or 1-2 years off.

 

This is because it's uncommon to be struggling to a significant degree at 3 years off. I'm nearly 2 years and 10 months off, so not far. If I read stories of people who were still in this this far out, they are expressing disappointment at "having a wave this far out". My experience is constant. It does not end. Even the better periods are symptomatic and difficult.

 

The symptoms shift, so I cannot even plan a life adapted around them, because I am still on a rollercoaster of physical effects. Sometimes I might be a zombie all day and struggle to function, sometimes I might be wired but tired and have less trouble functioning but feel extremely ill, sometimes my legs might be weak and tight and I struggle with mobility, I have managed to just about avoid having any bathroom-related accidents for a while, but it is a constant, looming issue to stress about and it's been close a few times recently, sometimes I might have an all-day headache, sometimes I might have an all day feeling like an allergic reaction and itch all over and struggle to think clearly, sometimes I might feel constantly suicidal or depressed.

 

I usually wake up at 4am or thereabouts, sometimes I go back to sleep, sometimes I don't, it's rarely restful and usually nightmare-ridden.

 

Most days are some sort of combination of the above. I've barely had anxiety for most of this, just a deep sense of physical stress that comes and goes, but I've started waking with anxiety a couple of steps below a panic attack lately.

 

I also have sexual dysfunction ontop the the issues using the bathroom, and this has now been the case for much of my 30s, the decade people usually find partners and have families if they haven't done so already, so that's another way life is just really limited. I live a limited, mundane life of mostly fighting through symptoms while living with my parents in my 30s. My career is badly impacted, my finances are badly impacted, I have lost a large number of friends, my physical health is absolutely wrecked from years of stress, being very sedentary, barely sleeping etc.

 

It has taken years of fighting to get to this point and the "reward" or outcome of that is not worth it at all.

We are here for you mate no matter how long this journey is. You have come so far and although you still have a fight on your hands, l I believe you will get there in time. It's not fair all of this but keep up the good fight. Your work on here is making such a difference. Your life means something for sure. Everyone is behind you all the way.

1 hour ago, Luke said:

It's difficult to find people who are 3 years entirely off of medications in support groups, they exist, but it's uncommon. Look at the membership here- a very, very high proportion are either tapering or 1-2 years off.

 

This is because it's uncommon to be struggling to a significant degree at 3 years off. I'm nearly 2 years and 10 months off, so not far. If I read stories of people who were still in this this far out, they are expressing disappointment at "having a wave this far out". My experience is constant. It does not end. Even the better periods are symptomatic and difficult.

 

The symptoms shift, so I cannot even plan a life adapted around them, because I am still on a rollercoaster of physical effects. Sometimes I might be a zombie all day and struggle to function, sometimes I might be wired but tired and have less trouble functioning but feel extremely ill, sometimes my legs might be weak and tight and I struggle with mobility, I have managed to just about avoid having any bathroom-related accidents for a while, but it is a constant, looming issue to stress about and it's been close a few times recently, sometimes I might have an all-day headache, sometimes I might have an all day feeling like an allergic reaction and itch all over and struggle to think clearly, sometimes I might feel constantly suicidal or depressed.

 

I usually wake up at 4am or thereabouts, sometimes I go back to sleep, sometimes I don't, it's rarely restful and usually nightmare-ridden.

 

Most days are some sort of combination of the above. I've barely had anxiety for most of this, just a deep sense of physical stress that comes and goes, but I've started waking with anxiety a couple of steps below a panic attack lately.

 

I also have sexual dysfunction ontop the the issues using the bathroom, and this has now been the case for much of my 30s, the decade people usually find partners and have families if they haven't done so already, so that's another way life is just really limited. I live a limited, mundane life of mostly fighting through symptoms while living with my parents in my 30s. My career is badly impacted, my finances are badly impacted, I have lost a large number of friends, my physical health is absolutely wrecked from years of stress, being very sedentary, barely sleeping etc.

 

It has taken years of fighting to get to this point and the "reward" or outcome of that is not worth it at all.

I am so sorry you have been going through this hell for so long @Luke and can only hope that you will start to see significant and long-term improvement soon.

Very tough battle but you will win it, please hang in there, stay strong, it will get better, we are all here for you as you are for us.

Edited February 12Feb 12 by Fullhealing

1 hour ago, Luke said:

It has taken years of fighting to get to this point and the "reward" or outcome of that is not worth it at all.

Hi @Luke I am very sorry to read this Luke, I really thought you had turned the corner. Believe me I can well

and truly understand you. I am still in a wave from hell myself. Now trouble is I just don't know what to say Luke,

I am in such a low state myself, Car might have to be scrapped, it's in a tricky situation, as in computer module

isn't talking to the keys. Electric handbrake ON, it's Auto and stuck in park, can't use a code reader without ignition,

and 50 miles from main dealer.🤔 So yes not helping my Wave mind.

 

But back to you Luke, all I can say is keep taking each second, minute, hour and day at a time. Now I know at almost

3 years, that it's feeling impossible, and I get that, because I have FELT it myself. When in a vicious wave it's hard to 

feel anything else. Everything seems FUTILE. BUT you have a LOT more years ahead of you than me Luke, so I truly

say keep gently plodding, for now make AR your king project, and PROMISE yourself you will write your OWN SUCCESS story.

 

Stay strong and stay safe Bud,        B.🙏🤞👍

@Luke, we have to hold on, we don't have another choice. I feel you very well, our suffering is a real agony... But we have to encourage each other to survive and hope a relief one day.

Svetla 

Thanks everyone. I can't really say much else.

I agree with everything the friends have said, @Luke.
I want to add that reading your post about your situation  I am again and even more impressed how you were willing to take the incredible initiative to set up a new forum in a time of need for so many of us. There were many who were feeling stronger and had to struggle less, but you were the one stepping up. However your life will develop, you will look back on what you did and be proud of the young man you were. ❤️

@Luke - Without you taking on and creating this site, without you creating the Reddit post that you did years ago, I would have no idea where to turn in my darkest moments and the world looking back at me like I was crazy. I took comfort in finding the people who were experiencing the same horror that I am, I now have friends to talk to when my days are feeling horribly low and finally have a route ahead of me, even though most of the time I debate whether I’ll be successful in it. 
 

Without the above, I’m not sure if I’d be here typing this message to you.. Keep your head up and moving forward mate, you’re destined for something larger than this, I promise. 

@Luke. Thank you for such Raw honesty.  The fact that you are helping others through this gives me pause...and chills. There's a lot wrong with the world...and there's courage like yours. 

I think you said it somewhere...the body is designed to heal. Who knows why some nervous systems are more delicate,  or slower??? (Mine was called "exquisite " by a Neurofeedback practicioner.) A brain map showed that my nerves take less than 1/100 of a second to respond to any slight change in stimulus. )

We are pioneers.  You moreso than me. I just joined the wagon train. 

What else can I say but THANK YOU.

Hi @Luke, I'm really sorry to hear this. I sincerely hope you will turn a corner soon and are well on your way to full recovery.

 

I'm rooting for you.

 

PS: Have you had any tests done in recent years to rule out any physical illness?

 

Niels

Edited February 12Feb 12 by Niels91
Noticed I responded to an older post in Luke's thread

@Nemina Thank you. I didn't do it alone. @Chippy has done huge amounts of work on it.

 

@The_Taper_Man Thank you for the kind words.

 

11 hours ago, mars said:

I think you said it somewhere...the body is designed to heal.

 

I don't believe that the body was designed, so it was unlikely to be me that said this. The body does have a natural tendency towards healing though, but clearly this is not universal and it doesn't always work. Not everybody gets better from everything. Chronic illness is very real. Nobody lives forever.

 

@mars thank you for the kind words.

 

11 hours ago, Niels91 said:

PS: Have you had any tests done in recent years to rule out any physical illness?

 

@Niels91 thank you for the kind words. 

 

I had a lot in the first year and a half or so of withdrawal. Many, repeat blood tests, an MRI scan etc.

 

I had persistently high cortisol for the first 7-8 months, as measured in both morning blood tests and over a 24h period by urine collection. This eventually normalised.

 

Likewise, my thyroid displayed abnormal behaviour (after fighting my doctors for months to get a blood test for it), this eventually normalised.

 

An abnormality was noticed on my MRI scan, neurologists insist it is "not clinically relevant".

 

My physical effects began immediately from pill #1 of mirtazapine, and then significantly worsened after tapering off. During my 1 month taper, they were all rapidly improving. It's certainly possible that Mirtazapine has created a secondary, physical illness that is discoverable and treatable, but if it has, I haven't found it.

 

Regardless, I am improving in time, slowly and non linearly. I'm no longer disabled at all, just ill to varying degrees mentally and physically. If a "cure" for a different physical illness were identified, that's the sort of improvement you'd hope for from a long term illness for such a cure anyway really.

Luke, regarding the nightmares, I have a suggestion for you.

I had nightmares for years in my life a lot of the nights (unrelated to psych drugs) because of traumas and what not.

nothing helped with it, but at some point when i saw a nuerologist when i slowly got worse with my original condition, she gave me a prescribtion for Silexan (lavender oil), and since then i take it and barely ever have nightmares.

if you are willing to try, you can try taking Levander oil medicine/supplement before you sleep, the normal 80mg dose should be enough.

Edited February 13Feb 13 by Lighty

On 2/13/2026 at 4:34 AM, Luke said:

was unlikely to be me that said this. The body does have a natural tendency towards healing though, but clearly this is not universal and it doesn't always work. Not everybody gets better from everything. Chronic illness is very real. Nobody lives forever.

I apologize for misrepresenting you. 

 

But I hope you can still have hope for yourself? 

 

I have had 26 years of my life stolen. But here I am, believing I'll get some back..

Partly because of you.  

 

Some experience i want to share . I had a horrible trauma therapist who, after shared my scariest abuse memory, sent me an email to say she could no longer work with me. I WAS DEVASTATED,. This was not the first "professional " to reinforce my belief that I was beyond help. 

 

Yet I remembered that in an earlier session she had recommended a treatment path that I never considered before.  

 

That particular path didn't work for me but the research led me to the world of neuro modulation and applied physiology. 

 

I like it because it's MEASURABLE.  They did what's called a brain map which measures electric neural activity.  I could SEE  what pathways were misfiring. 

 

After a few months, I was much less sensitive to leaf blowers. It felt miraculous. 

 

I continue this course as I can afford it. 

 

My point is... I hate to see anybody  give up trying new things. Technology is changing so much and You are much younger than me.  Still so much life left for us! Suffering can take hope away.  Let's not let it!

 

 

 

 

 

You will be in my nightly loving kindness mediation @Luke. 

 

You have done so much hard work on this gruelling and cruel journey. 😘 I truly feel for you at the moment.

 

It may not mean much to you right now, however you have really given me a huge leg up and somewhere great to connect with other people on this site. Yes you created it with Chippy but that is ok, you have to give yourself some compassion for the what you have done whilst in your own dreadful pain and turmoil. I have no idea how you even could do this in your debilitating protracted withdrawal. Truly amazing and courageous. 

 

 

 

 

On 2/13/2026 at 9:09 PM, Lighty said:

if you are willing to try, you can try taking Levander oil medicine/supplement before you sleep, the normal 80mg dose should be enough.

 

Thank you for the suggestion. I will consider it.

 

I'm reluctant to introduce new substances to treat symptoms. The nightmares are not constant anymore- I believe I just need more time.

 

15 hours ago, mars said:

I apologize for misrepresenting you. 

 

But I hope you can still have hope for yourself? 

 

No apology necessary.

 

I do, I have improved a huge amount from being totally disabled for a long period of time. I need plenty more time and it is unclear how much, and what things will be like in the end. It has also impacted every facet of my life negatively.

 

5 hours ago, Tracey said:

You will be in my nightly loving kindness mediation @Luke. 

 

You have done so much hard work on this gruelling and cruel journey. 😘 I truly feel for you at the moment.

 

It may not mean much to you right now, however you have really given me a huge leg up and somewhere great to connect with other people on this site. Yes you created it with Chippy but that is ok, you have to give yourself some compassion for the what you have done whilst in your own dreadful pain and turmoil. I have no idea how you even could do this in your debilitating protracted withdrawal. Truly amazing and courageous. 

 

Thank you for the kind words @Tracey.

 

 

The last couple of days have been a bit better, my sleep was a bit better for two nights, randomly, and this did feed into the daytime feeling mostly okayish, however last night I had big flare up of symptoms again and this led to me sleeping poorly and not feeling good again today.

 

Still, a couple of days with more minimal physical symptoms and feeling somewhat close to okay psychologically is positive.

33 minutes ago, Luke said:

The last couple of days have been a bit better, my sleep was a bit better for two nights, randomly, and this did feed into the daytime feeling mostly okayish, however last night I had big flare up of symptoms again and this led to me sleeping poorly and not feeling good again today.

 

Still, a couple of days with more minimal physical symptoms and feeling somewhat close to okay psychologically is positive.

100% positive mate.