Many of you sound quite confident that despite how far out I am and how severe this is, it can still be a wave and it will pass. That means so much to me. It gives me something to hold onto. Thank you. ❤️❤️

Every day is still a huge struggle. I am so scared because this time feels different. What if it stays like this? What if it lasts longer than I can cope with? I am trying very hard to hold onto the hope you are giving me. 🙏

Since I started this whole journey of tapering and coming off medication, one of the things that helped me most was getting back into running.

Exercise used to be a normal part of my life, but while on the medications, because of both the physical symptoms and the indifference I felt, I couldn’t do it anymore. Then exactly two years ago I somehow found the inner resources to start running again.

I signed up for a marathon, and the training gave me a sense of purpose, stability and something familiar to hold onto. I would simply go running. If I wanted to cry, if I hated everything, I still went. There were difficult nights when I had to modify my training, but overall I kept exercising throughout this whole period.

Especially during the last six months, I could actually feel my body recovering. I was becoming stronger and had more endurance. I wasn’t running only to distract myself or fill the time anymore. I was starting to genuinely enjoy it again. That gave me hope and made me think that maybe my life really was beginning to come back together.

This is the first time during this whole journey that I have stopped running, apart from being sick with something like the flu. I feel so unwell and sleep deprived that I don’t know if I could do it right now. More importantly, even if I only ran slowly for a short distance, I worry that I might be doing more harm than good when my body isn’t able to sleep and recover properly.

At other times I actually felt that running helped calm my body and helped my sleep. I am trying to at least go for walks now.

But I feel so hopeless because right now I have lost something that helped give me the strength to get through all of this. Running was one of the few things that remained mine throughout this whole journey, and now even that feels temporarily taken away from me.

1 hour ago, HopeOfHealing said:

Thank you all for the support! It means a lot! Truly! ❤️🙏

Another update after last night. This is now the fifth night that my sleep has been severely disturbed.

Before these five nights, I had already gradually noticed my sleep getting worse. I was waking more often and waking earlier. Then I started waking suddenly in the middle of the night and being unable to fall asleep again. It feels like it has progressed step by step into where I am now, and I am becoming very frightened by how severe it has become and how many nights it has continued.

Last night Garmin recorded 5h29 of sleep with a sleep score of 49. I know Garmin is not completely accurate and I don’t want to treat the numbers as exact, but the trend worries me. My average overnight heart rate has continued to rise and was 62 last night, while my HRV has fallen to 47.

I feel so incredibly sleep deprived, but somehow it is even more than just being tired. The feeling is almost impossible to describe. It is like I am in some other dimension. I desperately want to sleep deeply, peacefully and continuously, and I don’t know what to do anymore.

What frightens me most is that last night I actually had less anxiety when I went to bed. I fell asleep quite quickly. But I cannot seem to stay asleep. It feels like I enter sleep for a little while and then immediately wake up again. Later in the night I woke and felt as though I barely slept at all afterwards. The sleep was incredibly shallow, although I remember a few small dreams, so I suppose there must have been little periods of sleep.

My sleep feels so shallow that twice during the night I became extremely hungry and could hear my stomach growling.

This is why I find it so hard to understand this simply as anxiety. I wasn’t lying there worrying or thinking myself into staying awake. Even when I felt some anxiety before bed, I told myself, “I accept that I am anxious right now. That’s okay. I can continue resting and allow these feelings to be here.” And I did fall asleep. The problem is that I cannot seem to remain asleep.

It genuinely feels as if something about the sleep mechanism in my brain is not working properly, and I am terrified that I am somehow losing my ability to sleep.

I also find it incredibly difficult to believe that this could still be withdrawal 1 year and 8 months off medication. I had a long period of relative stabilisation and, overall, an upward trend. Most importantly, I don’t remember having a period that felt quite like this before.

When I look at the yearly graph, I can see what looks like a wave pattern. But that almost makes this harder for me to understand. Even during a wave I would expect some fluctuation, some nights worse and others a little better, until eventually things start moving upward again. Right now it feels like it is progressively going down.

That makes me afraid that maybe some illness or something else has started. Why, after such a long period of improvement, would it suddenly become worse than it has been before? Why would a wave this far out be so severe and feel so different?

Has anything like what is happening to me right now ever happened to any of you with your sleep? If not personally, have you ever seen someone else here describe something similar? I just find what is happening to me right now almost impossible to comprehend.

Has anyone experienced such a severe deterioration in sleep this far into recovery, after a long period of stabilisation, where it seemed to keep getting worse for a while before eventually turning around again?

I am trying very hard to cope with it and not fight every sensation, but I am scared. Part of me keeps wondering whether my sleep has somehow become stuck in this strange state.

I would give anything just to be able to sleep normally again.

Please share if you have experienced anything similar, or remember someone else describing something like this. Right now I really need some perspective and hope that something this severe can still turn around.

Everything you have said here is very typical Mirt injury sleep issues. I have no idea what it does to the sleep system but this is how it manifests. I know only too well.

1 hour ago, HopeOfHealing said:

Since I started this whole journey of tapering and coming off medication, one of the things that helped me most was getting back into running.

Exercise used to be a normal part of my life, but while on the medications, because of both the physical symptoms and the indifference I felt, I couldn’t do it anymore. Then exactly two years ago I somehow found the inner resources to start running again.

I signed up for a marathon, and the training gave me a sense of purpose, stability and something familiar to hold onto. I would simply go running. If I wanted to cry, if I hated everything, I still went. There were difficult nights when I had to modify my training, but overall I kept exercising throughout this whole period.

Especially during the last six months, I could actually feel my body recovering. I was becoming stronger and had more endurance. I wasn’t running only to distract myself or fill the time anymore. I was starting to genuinely enjoy it again. That gave me hope and made me think that maybe my life really was beginning to come back together.

This is the first time during this whole journey that I have stopped running, apart from being sick with something like the flu. I feel so unwell and sleep deprived that I don’t know if I could do it right now. More importantly, even if I only ran slowly for a short distance, I worry that I might be doing more harm than good when my body isn’t able to sleep and recover properly.

At other times I actually felt that running helped calm my body and helped my sleep. I am trying to at least go for walks now.

But I feel so hopeless because right now I have lost something that helped give me the strength to get through all of this. Running was one of the few things that remained mine throughout this whole journey, and now even that feels temporarily taken away from me.

I'm so impressed that you managed to do a marathon in this madness! amazing @HopeOfHealing but there will be tougher times when you can do less it's all part of it and that's okay, I understand how much running serves as a coping tool for you but remember that the strength is always within you even if it's for a moment at a lower intensity, the body continues to heal regardless of what you do.

Just be gentle with yourself and do what you can, this wave, like its predecessors, will pass and you will be back running with many future marathons I promise you, just keep surviving and you will thrive!

Hang in there 🤍

5 hours ago, Chippy said:

Everything you have said here is very typical Mirt injury sleep issues. I have no idea what it does to the sleep system but this is how it manifests. I know only too well.

@Chippy I trust in what You say as you have walked a similar path (using Mirt, stopping at a similar time) as well as the fact that you were very active in both SA and here, so I believe that you have seen you fair share of stories, that show that there is a path through this. But still… The fear keeps coming back to me - How do you know? What if I am some exception?

I can hear in your posts how much you’re suffering right now @HopeOfHealing and I’m sorry 💜. I also use exercise as a distraction and a coping mechanism and I would struggle if it was taken away from me even for a short period. But I’m so confident that you will get running back soon, and that you have years of marathons ahead of you.

I just want to waves can all feel different and you can absolutely get hit with a bad wave that feels like it comes out of nowhere. My experience and timeline are different from yours, but last month I was convinced that I was seeing meaningful improvement, with some ups and downs, but that the worst was probably behind me. Then I got absolutely slammed with the worst symptoms I’ve had since I started holding my dose steady. There was about a week and a half where I didn’t sleep more than 4 or 5 hours a night because I would constantly wake up and not be able to get back to sleep, and 2 nights in there where I legitimately did not sleep at all. There were days when I cried for genuinely 10 hours of the day. The worst of it passed within about a week and a half and now I’m back to my standard WD sleep, which is ok but not great.

You’ll get through this too.

7 minutes ago, HopeOfHealing said:

@Chippy I trust in what You say as you have walked a similar path (using Mirt, stopping at a similar time) as well as the fact that you were very active in both SA and here, so I believe that you have seen you fair share of stories, that show that there is a path through this. But still… The fear keeps coming back to me - How do you know? What if I am some exception?

You’ve lost me slightly. Know what? Exception how?

35 minutes ago, Chippy said:

You’ve lost me slightly. Know what? Exception how?

Sorry, message wasn’t entirely clear. What I meant was how are you so sure, both in my case as well as your own, that this is WD. I am trying to find explanation of why would such a massive wave hit 20 months from zero. Reading stories on SA I was convinced that within a year I should be out of the woods. Even ChatGPT cannot define a clear link. So maybe it is a rhetorical question but how do I know it is WD? How do I know it will pass?

12 minutes ago, HopeOfHealing said:

how do I know it is WD?

I think you’re stuck in a loop at this point and I’m not sure anything I can say will convince you!

I know I’m injured from mirt as I feel injured. Before taking it I was perfect and happy and felt well. Now I feel actually ill.

I’m confused as to why you would think you are not in wd? There is no chemical imbalance that these drugs fix. It’s all been lie and smoke and mirrors this whole time. There is so much anecdotal evidence from the community. Are you saying we are all not in wd? Buying into the lies the medical community has traditionally pushed on us? Look around you! How much suffering. Why would you not be in wd and everyone else is still?

Who said there was a window that you would be healed in? You did yourself. The Community says that window varies hugely and can be months to many many years. Alto/Adele from SA took 11 years before sleeping better and even then she said she felt better some more after that!

As I said I think your stuck in an anxious loop, possibly a symptom in of itself. Acceptance of how things are is key. I’m so chilled about it all and hey i still suffer. There is zero chance this is anything but a drug injury!

@Chippy I didn't mean to be insulting in any way. I hope I didn't come across like that. If I did, I am very sorry about that.

You are right, my mind is stuck in a loop. It is just hard to believe that something this bad is even possible. Sometimes I can’t even believe that other people could have felt this bad from withdrawal because what I am experiencing feels unreal.

I feel like I am losing my mind. I don’t feel like myself and I can’t control my thoughts. I can’t just read a book or do something and become absorbed in it. Nothing seems important. Strangely, I don’t even feel particularly tired from the lack of sleep. Instead I feel completely emotionally dysregulated. I cry all the time. It feels like this is the end and there is no escape, like somehow this state cannot change.

With my rational mind, I know withdrawal is real. I know it from my own experience and from everyone here who has suffered from it. Earlier in my recovery I could clearly see it myself. I noticed improvements.

But now it is so bad that I simply cannot believe something like this can happen 1 year and 8 months after stopping the drugs. Maybe this has also become an anxiety loop. I honestly don’t know.

My whole history with this actually started with sleep. Five years ago, after being diagnosed with skin cancer and going through Covid around the same time, I developed sleep problems. That led to medications for the first time. Later I stopped the antidepressant, and around eight months afterwards I suddenly lost my sleep again. Looking back, maybe that was delayed withdrawal, but I didn’t know anything about withdrawal then.

Instead, I ended up on more and different medications, with terrible side effects. That was when, for the first time in my life, I felt like a zombie and felt that I didn’t want to live. I had never experienced anything remotely like that before the medications.

Then I slowly stopped everything. It was extremely difficult, and the year or more afterwards was horrible, but there were improvements. Especially during the last months, I really felt that I was getting better.

And now, at exactly the point when I thought I should be recovering, this happened. A week ago things were basically okay. Now I feel like this.

Sorry if I sound silly or keep repeating myself. I believe what you are telling me. That is exactly why I keep coming back here. But this feeling is so intense that right now I can’t get past it.

Knowing my own experience, I don’t feel that taking another drug just to make myself happier or make myself sleep is an easy answer. It feels like the only way is somehow to get through this. But right now I feel so unbelievably bad, and I can’t even explain exactly what “bad” means. It isn’t simply tiredness or physical pain. It feels almost as if every cell of my body cannot tolerate existing like this, and emotionally my whole being is suffering.

Maybe this is trauma from everything I have experienced. Maybe withdrawal. Maybe depression developing. Maybe an anxiety loop. I don’t know. It just doesn’t feel normal. It feels like I am losing my mind.

And knowing that only a week ago I was doing relatively okay makes it even harder to understand.

That is why I keep posting here. Every comment, every experience, every person who can tell me that withdrawal really can feel as severe, frightening and completely out of this world as I am describing, and that they still came out of it, gives me the smallest bit of hope to hold onto and wait. ❤️

But I also don’t know what to do with the fear. Because that part is real too. I am so scared of losing everything.

In short, I am extremely scared. I keep asking whether this really can still be withdrawal, because I honestly don’t know what else it could be. I know for sure that I couldn’t live like this forever, so somehow I have to get through it. I have to. But I am terrified because I don’t know if this is something outside of my control, or if something is actually wrong with my brain.

I desperately want to sleep normally again. To sleep in one piece, peacefully, for a normal amount of time. Instead I feel dull and strange, almost like I am drunk, but not actually tired. The intensity of this whole state is so difficult to describe.

I told a close friend again that I can’t sleep properly. She asked, “Why don’t you just sleep during the day then?” or “Why don’t you wait until you’re really tired?”

And somehow that hurt so much. Because this is exactly the problem. My body doesn’t seem to operate like that right now. I can’t simply choose to sleep when I am tired.

When even someone close to you, who knows at least something about what you have been through, cannot really understand it, it feels incredibly lonely. Other people seem to operate normally, and I don’t.

I know everyone has their own struggles, but right now this just feels so unfair.

13 minutes ago, HopeOfHealing said:

@Chippy I didn't mean to be insulting in any way. I hope I didn't come across like that. If I did, I am very sorry about that.

Oh no! You didn't, not at all! xxx

13 minutes ago, HopeOfHealing said:

You are right, my mind is stuck in a loop. It is just hard to believe that something this bad is even possible. Sometimes I can’t even believe that other people could have felt this bad from withdrawal because what I am experiencing feels unreal.

Good you can see that. The second part of this is more evidence of WD tbh!

14 minutes ago, HopeOfHealing said:

I feel like I am losing my mind. I don’t feel like myself and I can’t control my thoughts. I can’t just read a book or do something and become absorbed in it. Nothing seems important. Strangely, I don’t even feel particularly tired from the lack of sleep. Instead I feel completely emotionally dysregulated. I cry all the time. It feels like this is the end and there is no escape, like somehow this state cannot change.

This is so common all of what you have said here. My mind is very active and just wants to play all the time, not ruminating per sa just busy, of course we are all different but the same.

16 minutes ago, HopeOfHealing said:

But now it is so bad that I simply cannot believe something like this can happen 1 year and 8 months after stopping the drugs. Maybe this has also become an anxiety loop. I honestly don’t know.

Oh no, you are certainly having some nasty wave kick in, Ive seen this a few times now, doing better than have a set back. Keep your second fear game up, then you know this is just WD.

18 minutes ago, HopeOfHealing said:

My whole history with this actually started with sleep. Five years ago, after being diagnosed with skin cancer and going through Covid around the same time, I developed sleep problems. That led to medications for the first time. Later I stopped the antidepressant, and around eight months afterwards I suddenly lost my sleep again. Looking back, maybe that was delayed withdrawal, but I didn’t know anything about withdrawal then.

Instead, I ended up on more and different medications, with terrible side effects. That was when, for the first time in my life, I felt like a zombie and felt that I didn’t want to live. I had never experienced anything remotely like that before the medications.

This is the problem and how most of us come to drugs from sleep. A little sleep anxiety gets us looping, we go to the doctors, get harmed and then have real issues to deal with. Standard sadly. Can take a while to realise what has happened and stop the madness you got there eventually.

19 minutes ago, HopeOfHealing said:

Sorry if I sound silly or keep repeating myself. I believe what you are telling me. That is exactly why I keep coming back here. But this feeling is so intense that right now I can’t get past it.

You don't need to apologize, the intensity if more proof of WD, normal people don't feel this stuff so hard! It's not natural!

20 minutes ago, HopeOfHealing said:

Knowing my own experience, I don’t feel that taking another drug just to make myself happier or make myself sleep is an easy answer. It feels like the only way is somehow to get through this. But right now I feel so unbelievably bad, and I can’t even explain exactly what “bad” means. It isn’t simply tiredness or physical pain. It feels almost as if every cell of my body cannot tolerate existing like this, and emotionally my whole being is suffering.

Yeah more drugs, as you know is not the answer, The answer is community, acceptance, distraction, and general good living and coping skills. One day at a time! x

This restlessness is a common feeling, I am sorry I have never had it but I undnerstand it can be very unpleasant.

22 minutes ago, HopeOfHealing said:

Maybe this is trauma from everything I have experienced. Maybe withdrawal. Maybe depression developing. Maybe an anxiety loop. I don’t know. It just doesn’t feel normal. It feels like I am losing my mind.

100% WD, not you, not loosing your mind. Just the body still healing. It can take time. Have faith.

23 minutes ago, HopeOfHealing said:

That is why I keep posting here. Every comment, every experience, every person who can tell me that withdrawal really can feel as severe, frightening and completely out of this world as I am describing, and that they still came out of it, gives me the smallest bit of hope to hold onto and wait. ❤️

But I also don’t know what to do with the fear. Because that part is real too. I am so scared of losing everything.

We are here for you, and not going anywhere :) xxxx

16 minutes ago, HopeOfHealing said:

n short, I am extremely scared. I keep asking whether this really can still be withdrawal, because I honestly don’t know what else it could be. I know for sure that I couldn’t live like this forever, so somehow I have to get through it. I have to. But I am terrified because I don’t know if this is something outside of my control, or if something is actually wrong with my brain.

As I said, this is 100% WD. And you won't need to live like this forever. Work on calming your mind down, taking onboard what has happened and take it one day at a time. The body is amazing.

17 minutes ago, HopeOfHealing said:

I desperately want to sleep normally again. To sleep in one piece, peacefully, for a normal amount of time. Instead I feel dull and strange, almost like I am drunk, but not actually tired. The intensity of this whole state is so difficult to describ

You will, eventually and I empathise, you can;t make this happen though, you need to be chill and patient and stoic about it all. Hard I know but it is required of you to learn these skills now.

18 minutes ago, HopeOfHealing said:

I told a close friend again that I can’t sleep properly. She asked, “Why don’t you just sleep during the day then?” or “Why don’t you wait until you’re really tired?”

And somehow that hurt so much. Because this is exactly the problem. My body doesn’t seem to operate like that right now. I can’t simply choose to sleep when I am tired.

I had a friend say the same thing. I could never sleep outside of night time before all this, the body clock is a powerful thing. People cannot understand this, try to just let it go and stop looking for validation from those who can't give it to you.

19 minutes ago, HopeOfHealing said:

When even someone close to you, who knows at least something about what you have been through, cannot really understand it, it feels incredibly lonely. Other people seem to operate normally, and I don’t.

We understand. And are here for you, as I said try not to take it personally.

19 minutes ago, HopeOfHealing said:

I know everyone has their own struggles, but right now this just feels so unfair.

It is unfair, you have this! And we are hear with you the whole way! xxxxx

Hi @HopeOfHealing

I totally understand what you’re feeling. I had disrupted sleep since I’m off meds (4 months). In the end of July I experienced that severe sleep privation. For one week I didn’t sleep more than 1 hour or sometimes 20 min a night, had blood sugar spikes, and needed to be eating every 3 hours so I didn’t create even more panic and distress. I was also developing some afraid of sleeping. I tried to relax as much as possible, but somehow I couldnt reach the state where sleep happens. The moment I would role my eyes to fall asleep I would be jerk off and stayed awake. I also was thinking that I had lost my mind, thinking I was going crazy, that this isn’t normal.

One thing I did was sticking to a routine, cooking fresh meals every day (histamine was giving me problems too), always going for walks at night to try to exhaust me a little bit, having something like a tea before bed, and some simple rice cookies. I did follow chippy advice on just staying in bed, closing your eyes, and accept the fact that you will get the sleep you need. Don’t pressure yourself with sleep. You can try to imagine good moments or things you want to do. I like to think about the fresh and pleasant feeling of get into bed, the comfy feeling that this brings me, like if I’m swallow by my own bed 😂

I started to sleep a little better since then. At first waking up a lot of times during a night, and with cortisol at 4:30 but then was able to get back to sleep.

Last few weeks I have been sleeping all night, 7/8 hours.

So don’t had more fear to this, WD itself is already bad enough.

You had good windows! Remember these moments!

Edited August 20Aug 20 by Healing_s

Thank you so much to all. I really appreciate having people here that I can write to during moments like this.

As you mentioned @Chippy, you have seen a lot of people go through this even this late. Do you have any particular example I could read? I think the hardest thing for me to accept is that a wave can come this late. I tried to find stories from others who have experienced PAWS going at year 2, but seems like survivingantidepressants.org has not just become read-only but it now says "This community is not available" which means the stories are also no-longer available, which is a terrible shame!

For example, when @Healing_s writes about having a wave at 4 months, and I completely believe that can be withdrawal because I went through that period myself and experienced similar things. But at 20 months off, I really thought withdrawal symptoms would no longer be able to affect me this severely. The symptoms feel familiar, but so much time has passed since stopping the medication that it is very difficult for me to understand how my nervous system could still react this way.

I am struggling a lot because my anxiety keeps telling me that this time it won’t resolve.

My husband doesn’t believe that. He thinks this is a wave, possibly made much worse by the hormonal changes before my period, and that it will start settling again in the coming days.

I desperately want to believe him. Right now, though, my anxiety makes it incredibly difficult to imagine that something that feels this severe can simply turn around again.

1 minute ago, HopeOfHealing said:

As you mentioned @Chippy, you have seen a lot of people go through this even this late. Do you have any particular example I could read? I think the hardest thing for me to accept is that a wave can come this late.

I have a memory like a sieve for histories, @Luke is much better at this than me, I just remember the information rather than the individual people lol sorry. There is one lady on here but her situation is quite different from yours, she was basically healed in side the year and is now having a big wave. It happens, you are not alone.

2 minutes ago, HopeOfHealing said:

but seems like survivingantidepressants.org has not just become read-only but it now says "This community is not available" which means the stories are also no-longer available, which is a terrible shame!

I think this is temporary, it happened earlier in the year and was fixed, I spotted it earlier and asked Lic to contact admin as she is in contact with them still. Im sure it will be back soon.

3 minutes ago, HopeOfHealing said:

But at 20 months off, I really thought withdrawal symptoms would no longer be able to affect me this severely.

That isn't the case, I am afraid, it really is a case of trying to accept whatever comes your way and in WD, often curve balls show up, it is never predictable.

4 minutes ago, HopeOfHealing said:

The symptoms feel familiar, but so much time has passed since stopping the medication that it is very difficult for me to understand how my nervous system could still react this way.

I can see this, but believe me it happens x

4 minutes ago, HopeOfHealing said:

I am struggling a lot because my anxiety keeps telling me that this time it won’t resolve.

This is the problem isn't it, when your nervous system is so sensitive it tells you all sorts of things and it can feel impossible to put them down. Everytime something comes up in your mind that makes you doubt, just say to yourself 'this is WD making me think this way not me' and move your mind onto something else, do it repeatably as many times as needed without self judgement. xxx

6 minutes ago, HopeOfHealing said:

My husband doesn’t believe that. He thinks this is a wave, possibly made much worse by the hormonal changes before my period, and that it will start settling again in the coming days.

You Husband sounds like a kind and caring wise man, you should listen to him. Hormones 100% are all part of this, not the cause but can play into it. There are other triggers too, stress, alcohol, antihistamines, anaesthetic, antibotics, all sorts of things.

Just try and settle in, find some peace, keep calm and accept. This is temporary. Time is your friend.

3 hours ago, HopeOfHealing said:

Sorry, message wasn’t entirely clear. What I meant was how are you so sure, both in my case as well as your own, that this is WD. I am trying to find explanation of why would such a massive wave hit 20 months from zero. Reading stories on SA I was convinced that within a year I should be out of the woods. Even ChatGPT cannot define a clear link. So maybe it is a rhetorical question but how do I know it is WD? How do I know it will pass?

At 20 months off I was totally non functional and not having waves because it was awful with intense symptoms pretty much all the time.

All triggered by short term use of mirtazapine. It was and is withdrawal.

"Having a wave" means that it has been better at times. Going up and down like this is classic withdrawal syndrome from antidepressants.

2 hours ago, Luke said:

At 20 months off I was totally non functional and not having waves because it was awful with intense symptoms pretty much all the time.

Wow! And how do you feel now @Luke? If I did the math right, you have been 40 months off. And have you experienced any delayed waves or just a gradual improvement throughout?

@Luke Also how was your sleep during these 40 months? And did you have longer periods of sleep disruption lasting many days?

Good morning. Last night was another very difficult night.

Before going to bed I was actually very tired. I was watching a movie with my family and could feel myself drifting off on the sofa. But when it was time to go to bed, the anxiety returned. My heart was pounding, I felt uncomfortable in my own body and found it difficult to lie still and relax.

I understand that fighting it doesn’t help and that I need to accept the anxiety. I really try to do that while lying there, but apparently I am my own biggest obstacle and I can’t manage it. Then I panic that I am keeping myself trapped in this and that I am simply not capable of calming down enough to get out of it. Does that mean there is still a way out of this insomnia loop even if I can’t control the anxiety?

Altogether I slept around 3 hours, with a long period awake in between. Looking at my Garmin trends, my sleep right now is the worst it has been throughout the whole period of taking and stopping these medications. How is that possible?

What makes it even harder to understand is that immediately before this, I had probably the best and most stable sleep I have had in the last couple of years. If anything, it had almost gone in the opposite direction. I would fall asleep watching TV in the evening and sometimes have very strong waves of tiredness during the day. But my nighttime sleep was good, deep and sufficient.

I am still in shock that it could change so dramatically in the wrong direction and continue like this for almost a week.

I am not trying to run with this amount of sleep deprivation. My body is normally used to running regularly and I think that also releases a lot of stress for me. Today I am planning to walk for several hours instead. I hope movement can release some of this tension and gently tire my body without pushing it too hard.

I know I keep repeating myself and asking the same questions. But right now I really need to hear from people who have actually been there, especially anyone whose sleep became this bad at a late stage of recovery. Please keep sharing your experiences, even if you have already told me. I need to hear that there is a way out of this. That it isn’t permanent. That I will sleep again, sleep properly and eventually feel okay again. I just wish someone could tell me approximately how long it will take.

I have also been thinking a lot about what happened to me before. In August 2023, after relatively stable sleep during the summer and around 8 months off Brintellix, my sleep also suddenly deteriorated very quickly.

That time I couldn’t cope and went to my doctor. She told me that things had become severe enough that we needed to calm my nervous system, and I was prescribed Z-drugs and quetiapine. From there everything went terribly wrong. During my first experience with medication I hadn’t experienced such severe side effects, but suddenly I reacted very differently even to medications I had taken before. Something seemed to have changed in how my brain and nervous system reacted.

Looking back, I wonder whether the withdrawal itself wasn’t initially so obvious, but my nervous system had become sensitised. Maybe that sudden collapse in sleep was also part of PAWS as my brain continued adapting after the medication.

I know analysing the past doesn’t change what is happening now. But it matters to me because the last time my sleep collapsed, that was exactly the point where I became desperate and returned to medication. I was looking for immediate relief and, based on what I was told at the time, it seemed like the lesser evil. In my case it ultimately made everything much, much worse.

This time I feel that I have to find a way through this rather than repeat that experience. But during the night, when I am tossing around in bed with anxiety, thoughts still come into my head about taking something, “just for one night”, just to finally sleep.

But knowing my own history, I don’t believe there is such a simple thing as “just one night” for me anymore. And one of the hardest parts is feeling that I don’t even know where to turn for professional help, because I am afraid the answer will simply be more medication.

@HopeOfHealing bad all the way through, with gradual improvement. It has been non linear, so up and down. Only in recent months have I had more distinct waves and the gaps in between I'm okayish with various physical symptoms.

Initially I was sleeping 2x 20min periods a night. After a few months it was some hours but very broken, full of nightmares and waking up early and exhausted. I was always extremely ill but the mornings were often particularly rough.

Past 2.5 years off still similar to above.

Now at 40months I wake up too early, and also usually at least twice but often more times through the night. I still have nightmares sometimes, or vivid dreams.

Not days of sleep disruption, years.

I wanted to share a quote from SA with you, but it appears to be down at the moment.

@HopeOfHealing I am sorry about your bad night again.

I know I sound like a stuck record. It is really important to keep applying acceptance to all of this. You are having anxiety as a wd symptom and it is feeding on whatever is available to it. So when you go to bed it feeds on a fear of sleep, which is started by a technical difficulty to sleep which is also a wd symptom. So it's a kinda loop. All you can do is apply acceptance to these facts. Brutal cold unfiltered radical acceptance. Acceptance of the injury acceptance of the sleep issues, even acceptance of the anxiety that is keeping you awake.

I remember so clearly, long long walks, in the grey cold with my family, exhausted, sleep deprived, wondering if this ever ends. And it does. My sleep is much better than it was then. Is it good still?, no, it is however much better and I have very restful nights almost every night now. I still wake often exhausted having been asleep for many many hours, I still wake 1 sometimes 2 times in the night and wake early. I go back to sleep after this, but it is always broken from here with vivid vivid dreams. Sometimes I wake feeling refreshed, often I don't. This has been my life now for 2.5 years. I don't think it will always be this way. I have improved. I will keep improving. I have periods where I feel much better, then periods of feeling much worse. Standard right.

I agree, I think your intial sleep issues were to do with past drugs/injuries, kindling basically. I believe the same is true for me. I had two uneventful runs on Sertraline with very fast tapers not using scales. I also had nasty side effects whilst on the drug. All of this is the start of bruising the cns, setting the scene for more harm once additional drugs are added in.

My heart goes out to you, I can feel your pain on the screen, I know how you feel today so so very well. You are not alone, it is making me feel quite emotional writing this actually. Breaks my heart, it is so hard I know. You have got this tough, I know you do. xxxxx

First, thank you so much to everyone who keeps answering me and being here with me through this part of the journey @Chippy @Luke @Fullhealing and others! I appreciate it more than I can express, especially right now. ❤️❤️

There are a few things that keep going around and around in my head.

Yes, withdrawal. I have experienced waves and windows myself. But my mind simply cannot understand how, after a longer period of stabilisation and 20 months off medication, it is possible to suddenly experience what feels like the most intense and severe wave so far. What is the logic behind that?

We all know our own bodies, and this insomnia feels different and unusual for me. I struggle to get into sleep, and when I do, I only stay there briefly. This has now been happening for 6 days. Even during previous waves there were fluctuations, maybe one night when I managed to sleep more, and overall the feeling was different. It is difficult to explain, but I feel that difference, and that is exactly what frightens me.

For those of you who have experienced severe sleep deprivation for many days, how did it actually make you feel?

I don’t feel particularly sleepy or even extremely tired. I just feel bad. There is this horrible internal nervousness and restlessness that feels almost unbearable. I feel quite dissociated, I cry very easily and once I start it is difficult to stop. I feel like a ghost walking around. I don’t feel like myself. Even my thoughts and feelings don’t seem like mine.

Although I am genuinely grateful for even the 3 hours of sleep I sometimes get, because at least my body and brain are getting some sleep, it doesn’t feel like I have slept. It feels like I have struggled through the entire night and those little periods of sleep were just tiny pauses in between.

I lie there and try to accept the anxiety rather than fight it, and eventually these little periods of sleep happen. But what I cannot control is that I don’t stay asleep. I can’t seem to hold onto sleep once I enter it. This feels very different from simply struggling to fall asleep but then eventually sleeping for several hours.

Has anyone experienced this particular pattern, where you can fall asleep, but somehow can’t remain asleep for long?

As the sleep deprivation continues, the physical anxiety inside my body also becomes stronger and harder to manage. Then I become terrified of losing control or even losing my mind. I know that is also anxiety talking, but it is one of my greatest fears.

I am scared that if nothing changes I will eventually become desperate enough to seek medical help, while knowing from my previous experience that medication is not the answer for me. Last time I became desperate because of sleep, I ended up taking more medications and ultimately became much, much worse. Thankfully, after stopping them I gradually improved. My sleep improved too.

That is another reason this sudden deterioration is so difficult for me to understand.

Right now I am fortunate to be off work, so I can postpone things and don’t have to function normally. But I know that can’t continue forever.

During the day I mostly walk. I walk with my children, with my husband, and just keep moving because then I don’t have to think about what else to do. But apart from walking, I find it incredibly difficult to focus on anything or redirect my thoughts. I can’t really become absorbed in a book, a movie or anything else.

What did you actually do during the day when you were in a state like this? What helped you get through the days?

And for those of you who have been here a long time and have read many stories about severe sleep problems, including cases this far into recovery, do you genuinely believe that I can still get my sleep back?

I don’t know how to explain it, but right now I can’t even imagine myself sleeping normally again. I think that is why I keep writing here. Hearing from people who have actually experienced something like this and came through it gives me something to hold onto.

Edited August 21Aug 21 by HopeOfHealing

1 hour ago, HopeOfHealing said:

Yes, withdrawal. I have experienced waves and windows myself. But my mind simply cannot understand how, after a longer period of stabilisation and 20 months off medication, it is possible to suddenly experience what feels like the most intense and severe wave so far. What is the logic behind that?

There is no logic to this unfortunately. Withdrawal almost always behaves in a very illogical manner. That is why practicing acceptance is so important. We most often can't explain any particular wave, all we can do is get through it.

1 hour ago, HopeOfHealing said:

I lie there and try to accept the anxiety rather than fight it, and eventually these little periods of sleep happen. But what I cannot control is that I don’t stay asleep. I can’t seem to hold onto sleep once I enter it. This feels very different from simply struggling to fall asleep but then eventually sleeping for several hours.

Has anyone experienced this particular pattern, where you can fall asleep, but somehow can’t remain asleep for long?

I have had many nights like this. Again, I don't know why this happens, but I think this is a normal pattern of sleep disruption in withdrawal.

1 hour ago, HopeOfHealing said:

During the day I mostly walk. I walk with my children, with my husband, and just keep moving because then I don’t have to think about what else to do. But apart from walking, I find it incredibly difficult to focus on anything or redirect my thoughts. I can’t really become absorbed in a book, a movie or anything else.

What did you actually do during the day when you were in a state like this? What helped you get through the days?

I practice distracting myself as much as possible. Like you, I try to get out of the house when I can. On my worst days, if I can't focus on reading a book or watching TV, I either read success stories on Surviving Antidepressants or watch interviews with people who have come through horrific psych drug withdrawal and come to the other side. Sometimes I'll even play the interviews over a couple times.

1 hour ago, HopeOfHealing said:

And for those of you who have been here a long time and have read many stories about severe sleep problems, including cases this far into recovery, do you genuinely believe that I can still get my sleep back?

Yes. Absolutely.

2 hours ago, HopeOfHealing said:

First, thank you so much to everyone who keeps answering me and being here with me through this part of the journey @Chippy @Luke @Fullhealing and others! I appreciate it more than I can express, especially right now. ❤️❤️

There are a few things that keep going around and around in my head.

Yes, withdrawal. I have experienced waves and windows myself. But my mind simply cannot understand how, after a longer period of stabilisation and 20 months off medication, it is possible to suddenly experience what feels like the most intense and severe wave so far. What is the logic behind that?

We all know our own bodies, and this insomnia feels different and unusual for me. I struggle to get into sleep, and when I do, I only stay there briefly. This has now been happening for 6 days. Even during previous waves there were fluctuations, maybe one night when I managed to sleep more, and overall the feeling was different. It is difficult to explain, but I feel that difference, and that is exactly what frightens me.

For those of you who have experienced severe sleep deprivation for many days, how did it actually make you feel?

I don’t feel particularly sleepy or even extremely tired. I just feel bad. There is this horrible internal nervousness and restlessness that feels almost unbearable. I feel quite dissociated, I cry very easily and once I start it is difficult to stop. I feel like a ghost walking around. I don’t feel like myself. Even my thoughts and feelings don’t seem like mine.

Although I am genuinely grateful for even the 3 hours of sleep I sometimes get, because at least my body and brain are getting some sleep, it doesn’t feel like I have slept. It feels like I have struggled through the entire night and those little periods of sleep were just tiny pauses in between.

I lie there and try to accept the anxiety rather than fight it, and eventually these little periods of sleep happen. But what I cannot control is that I don’t stay asleep. I can’t seem to hold onto sleep once I enter it. This feels very different from simply struggling to fall asleep but then eventually sleeping for several hours.

Has anyone experienced this particular pattern, where you can fall asleep, but somehow can’t remain asleep for long?

As the sleep deprivation continues, the physical anxiety inside my body also becomes stronger and harder to manage. Then I become terrified of losing control or even losing my mind. I know that is also anxiety talking, but it is one of my greatest fears.

I am scared that if nothing changes I will eventually become desperate enough to seek medical help, while knowing from my previous experience that medication is not the answer for me. Last time I became desperate because of sleep, I ended up taking more medications and ultimately became much, much worse. Thankfully, after stopping them I gradually improved. My sleep improved too.

That is another reason this sudden deterioration is so difficult for me to understand.

Right now I am fortunate to be off work, so I can postpone things and don’t have to function normally. But I know that can’t continue forever.

During the day I mostly walk. I walk with my children, with my husband, and just keep moving because then I don’t have to think about what else to do. But apart from walking, I find it incredibly difficult to focus on anything or redirect my thoughts. I can’t really become absorbed in a book, a movie or anything else.

What did you actually do during the day when you were in a state like this? What helped you get through the days?

And for those of you who have been here a long time and have read many stories about severe sleep problems, including cases this far into recovery, do you genuinely believe that I can still get my sleep back?

I don’t know how to explain it, but right now I can’t even imagine myself sleeping normally again. I think that is why I keep writing here. Hearing from people who have actually experienced something like this and came through it gives me something to hold onto.

So sorry to hear that your sleep is not improving @HopeOfHealing it's brutal and I deeply understand your confusion and concerns, lack of sleep itself can cause riots! if it's anxiety and or all sorts of other issues and/or greatly intensify existing symptoms and affect overall functioning, highly difficult to know for sure what came first.

As I remember, after 10 months or so, I was still experiencing pretty serious sleep issues, which were, among other things and mainly lack of awareness drove me to this point... big regret!

All I know that PAWS can definitely do this however there are other factors that can contributes as hormonal fluctuations, thyroid issues, lack of vitamins/minerals, autoimmune issues etc which worth checking, if you haven't already I think it's good to clear all of those aspects which obviously I wish it's none and it will improve on it own but continue guessing will only add more fuel.

I really hope tonight will take a positive blessed turn for you, hang in there 🤍

Edited August 21Aug 21 by Fullhealing