@Luke , I myself do still wake 1 or 2 times a night but maybe that a woman thing needing to go to the bathroom, bladders not as strong as it used to be 😂 and maybe a little age thing going on to. Sorry you still get nightmares, never really had those, just some stupid dreams thank goodness I don't remember them. I've had a bit of stomach issues, but there subsiding. Had to use 2 days of FMLA. Normally I'd push through them but wasn't gonna be in pain standing up for 8 hours. We only get 2 -15minute breaks in a 8 hour period, add the 6 machines on each side of me , the loud noise which is constant, the 75 + people I deal with every day gets a bit much. Sometimes I have to real myself in and say " Don't push the maybe Baby"!! So I've learned to tone it down a bit. The day I wake up with absolutely no cortisol morning's, and truly just wake up normal, and no more queezyness here and there during the day, and let's not forget the annoying headaches, ooh and let's add a full 8 hours of sleep I'd be golden. The strength is in you, I hear it in your words, and reading post from a while back, there has been so much improvement. We all would like this to be faster, but for now, were further along than when we started. You my friend have such courage and strength, and fully believe you will come out of this gloriously. Hugs for now xxxx Bernadette

Hi Luke

I hadn’t mean to compare you to Angie, sorry if it sounded that way.

I don’t think we can compare tbh anyway, all of us have totally different Symptoms that are disabling is different ways. I have too much energy in my body and can get out and do things, maybe that seems like I have it easier than someone who has no energy,

I don’t know, and it’s impossible to compare suffering as it’s so subjective. Whatever we are all going though is the hardest thing ever. It’s strange how all the symptoms manifest so differently.

I understand the grief regarding your job: I’ve lost a 20 year career I will never return to, I know I won’t return as I’ve lost my Occupational Therapy registration, plus i don’t want to go back to work in a mental health team that just prescribes meds!!

Maybe one day I can go and work in a cafe or something, but my career is a huge financial loss. But I’m a long way from work at the moment I’m too jittery to focus on anything, I keep thinking of work I could try to do but computers are a 100% no as I can’t sit ! And something in retail or a cafe would be too much stimulation so for now I can only do a bit of dog walking but I’m hoping I can work next year.

I have hope we will all continue to improve. If Baylissas has hope having done a coaching role for 20 years then I’ll do my best to be hopeful too.

I really do pray that things keep improving for you,

All the best

Rosie x

Edited August 13Aug 13 by Its-me-Rosie

@Bernadette nightmares are classic mirtazapine, which seems to induce all sorts of side effects that are less common with other drugs. Pharmacologically, it is a very dirty drug in that it has all sorts of actions in the body beyond the intended ones:

Low-Dose Mirtazapine-Induced Nightmares Necessitating its Discontinuation in a Young Adult Female - PMC

Nightmares and Mirtazapine—Time to be vigilant : Indian Journal of Psychological Medicine

Mirtazapine more than any other substance I've tried causes vivid and memorable dreams : r/Dreams

Does anyone else experience insane dreams on Mirtazapine/Remeron? : r/antidepressants

Mirtazapine-Induced Nightmares - PMC

Thieme E-Journals - Pharmacopsychiatry / Abstract

Mirtazapine induced nightmares in an adult male - Dang - 2009 - British Journal of Clinical Pharmacology - Wiley Online Library

Naturally, even though a casual google brings up large quantities of information about this, patients receive no warnings.

21 minutes ago, Its-me-Rosie said:

I hadn’t mean to compare you to Angie, sorry if it sounded that way.

I know, I appreciate your kind posts very much.

I just get upset being so far out. It is very difficult to spend years trying to find hope in these things and then just passing those milestones.

21 minutes ago, Its-me-Rosie said:

I understand the grief regarding your job: I’ve lost a 20 year career I will never return to, I know I won’t return as I’ve lost my Occupational Therapy registration, plus i don’t want to go back to work in a mental health team that just prescribes meds!!

I didn't work at all for 2 years. At least I have employment, that's something.

Hopefully in time you will too. I had really bad agitation, and really struggled to focus on something or "be still" and calm, I was just also far too physically impaired to do much else either. In time this did improve for me, and this year it has flared up more mildly in bad patches, but it's largely gone.

It likely will fade for you as well, in time.

Once you're better, you can think about what you might want to do with a clearer mind, from a place of strength. Perhaps you might consider being a private therapist? No prescribing drugs then.

21 minutes ago, Its-me-Rosie said:

I really do pray that things keep improving for you,

You too. I really appreciate the kind words- thank you.

Thanks Luke

Maybe one day I can go back to therapy. I don’t wait to write it off forever as forever is a long time and whilst I can’t imagine it now, maybe in a few years my view will change a lot.

You had mentioned your agitation before, I’m sorry it was so hard. It’s very difficult. When it’s bad I feel utterly off this planet . Sometimes when it lifts I do feel very fatigued, other times im ok, I do wonder if when it lifts all that fear will have burnt me so out much I’ll swing the other way, but I’m try to not give myself more second fear over it.

Luke…you have been through an extremely traumatic and gruelling time. Not only that, what we go through has little recognition or understanding and we shouldn’t underestimate the grief and invalidation linked to that pain and suffering as an additional layer.

It’s a hard journey we are all on, one day I look forward to your success story and oh what joy and hope it will bring to so so many 🕊️ until that day, onwards we plod

Hey @Luke its been a bit since i posted on your thread but i just wanted to ask how have you been doing recently?

You'll probably get a sense of this if you have a look through recent posts, but the gist is that I'm utterly sick and tired of being sick and tired, and a few months of one drug is still completely consuming my life every single day years afterwards with no end in sight.

You?

3 years and 4 months today.

Sleep remains a pretty major issue for me. It has improved over the years, and it varies, some nights are worse than others, but it is never good. I have not had a natural night of restful sleep for the entirety of these years.

I can usually (but not always) fall asleep okayish, but I wake up frequently throughout the night, sleep lightly, have nightmares etc and then finally wake up fairly early a lot of the time.

I'm constantly sleep-deprived and this has consequences for pretty much every other aspect of my health and wellbeing. I don't just need a decent night's sleep, I need to sleep well for a long time to recover from just the years of sleep deprivation alone.

Other than that, I've been managing, although I often feel pretty run down, sleep deprived as above, and have random symptoms like headaches/head pressure or feeling ill etc on and off. I sometimes feel a vague stressed and anxious feeling, or depressed. The physical fatigue has been a decent amount better in the last week.

Very much still in this, unfortunately.

My thoughts are with you, @Luke . I've suffered from insomnia for decades, especially the 3:00 am wake-up. Several years ago, I took a short course of Ambien but all it did was make me loopy. I use audio books for sleep and a night mask with built in speakers to control the racing thoughts. I practice timed breathing and other techniques, but I can't say my sleep hygiene is still not great. One thing that helps a bit is "restful wakefulness" where I accept I may not be able to get back to sleep, but allow my body to relax and focus on listening to the audio book to keep my mind calm.

10 hours ago, mstimc60 said:

One thing that helps a bit is "restful wakefulness" where I accept I may not be able to get back to sleep, but allow my body to relax

It think this is a really key skill in WD sleep to master. It keeps the second fear at bay. It can't fix WD sleep as WD sleep is an actual nervous system injury that the person has no control over, but it can stop making it worse. It does help me to have this mindset whilst I heal.

Sorry to hear it @Luke, not having a good night's sleep in almost 3 and a half years sounds awful and incredibly frustrating. Really glad to hear the physical fatigue is starting to show signs of improvement though, I know that's been one of your bigger barriers to regular exercise. Hope the progress keeps up!

Thank you all.

On 8/23/2026 at 9:12 PM, mstimc60 said:

One thing that helps a bit is "restful wakefulness" where I accept I may not be able to get back to sleep, but allow my body to relax and focus on listening to the audio book to keep my mind calm.

This is absolutely the right thing to do. I just stay in bed and try to rest either way. Usually, but not always, I do fall back asleep within 15-30min, but sometimes it can be an hour or two.

I'm maximising my potential to fall back asleep and get more, but I could really do with sleeping better in general still.

Last night, I may or may not have woken up, I think I remember doing so but it was very fleeting if so. I still woke up at about 5am and had vivid dreams. If I'm counting it as sleeping through the night until about 5ish, that's the first time I've not woken up repeatedly through the night in a couple of months.

On 8/24/2026 at 1:47 PM, SarahMc said:

Sorry to hear it @Luke, not having a good night's sleep in almost 3 and a half years sounds awful and incredibly frustrating. Really glad to hear the physical fatigue is starting to show signs of improvement though, I know that's been one of your bigger barriers to regular exercise. Hope the progress keeps up!

It has been, yeah, along with feeling extremely unwell in various ways. That has improved a lot too but I still get flare ups where I get strong head pressure or headaches, feel really off and sick and so on. At least they're flare ups now and not 100% continuous and they're also very unpleasant but not 100% debilitating anymore.

I do feel as though I've turned a corner in recovery in the last month or two, but it's been years and it's a slow turn so it's like turning a huge supertanker in the ocean- it doesn't mean I'm not still on the journey.

I am happy to hear about your improvement, even though it is shocking how long your process is and how much You have suffered. A young man in good shape and then such a deep injury from short use of these medicines... I really hope that Your tanker will turn the corner for good and your healing will accelerate. Thanks for all You do for us on this forum!!

Hi @Luke

Hope you continue to see Improvement.

You deserve it for the length of time you have gone through this.

👊

I had an immense wave a week ago, for several days. I have no idea whether I had a minor infection that then triggered a massive flare up of WD symptoms, or whether it was all WD, but an infection was ruled out and it did die down again. Fortunately no antibiotics required.

The agitation was absolutely immense, one step down from akathisia, severe hot flushes, headaches, exhaustion, very strong anxiety, waking up with a jolt in a panic and weak legs and generally feeling quite ill.

I've gone back to my "normal baseline" since then, which is slowly and steadily improving month by month.

A major issue for me is still sleep. The quality of it is somewhat better, but I almost always wake up sometime between 4 and 5 and I'm still pretty much constantly sleep deprived which leaves me feeling kind of **** a lot of the time. Less **** than a month ago though, on average. I think if this improved I'd be in a much better place. I'm still sometimes also plagued with intense nightmares, waking up burning hot, sometimes cold and so on. I'm getting pretty sick of waking up at 4am knowing I'll feel run down and shitty all day but hopefully this will turn around soon, and I'm trying to be positive about being able to say this is one of the main issues left now.

I'm definitely making progress all the time, but it can still get really quite bad at times, this last one was quite scary in terms of how ill I got, it was really quite a major flare up.

9 minutes ago, Luke said:

I had an immense wave a week ago, for several days. I have no idea whether I had a minor infection that then triggered a massive flare up of WD symptoms, or whether it was all WD, but an infection was ruled out and it did die down again. Fortunately no antibiotics required.

The agitation was absolutely immense, one step down from akathisia, severe hot flushes, headaches, exhaustion, very strong anxiety, waking up with a jolt in a panic and weak legs and generally feeling quite ill.

I've gone back to my "normal baseline" since then, which is slowly and steadily improving month by month.

A major issue for me is still sleep. The quality of it is somewhat better, but I almost always wake up sometime between 4 and 5 and I'm still pretty much constantly sleep deprived which leaves me feeling kind of **** a lot of the time. Less **** than a month ago though, on average. I think if this improved I'd be in a much better place. I'm still sometimes also plagued with intense nightmares, waking up burning hot, sometimes cold and so on. I'm getting pretty sick of waking up at 4am knowing I'll feel run down and shitty all day but hopefully this will turn around soon, and I'm trying to be positive about being able to say this is one of the main issues left now.

I'm definitely making progress all the time, but it can still get really quite bad at times, this last one was quite scary in terms of how ill I got, it was really quite a major flare up.

Glad the wave caused by the infection has passed.

We will all heal and make it out together, and make it our purpose to help others.

Dream Team ❣️

It’s nuts just how impactful these medications can be on people. Mirtazapine on top of an already sensitised nervous system has been terrible for me. Last drop to 5mg was too much and been suffering badly for past 10-11 weeks

I hope things improve for you. 🤞

5 hours ago, Lighty said:

Glad the wave caused by the infection has passed.

We will all heal and make it out together, and make it our purpose to help others.

Dream Team ❣️

Thank you, I'm honestly not sure if it was triggered by an infection, or whether the early symptoms were just WD as well and it was all just a huge flare up in general. I had to go to a doctor and get tested and I tested negative for an infection.

5 hours ago, Steve said:

It’s nuts just how impactful these medications can be on people. Mirtazapine on top of an already sensitised nervous system has been terrible for me. Last drop to 5mg was too much and been suffering badly for past 10-11 weeks

I hope things improve for you. 🤞

Thank you. Yes, just a few months of usage profoundly disabled me for a long time, and caused years of suffering.

39 minutes ago, Luke said:

I'm honestly not sure if it was triggered by an infection, or whether the early symptoms were just WD as well and it was all just a huge flare up in general.

honestly we don't know and it doesn't really matter haha

Good morning @Luke l, was just thinking of you and wondering how you have been. I hope things have been settling down a bit for you. With much love your way for some needed relief. ❤️

@Luke

Just dropping in to say i thought of you, and i hope you are doing well!

Thanks @Bernadette and @Lizardpushups.

3 years and 5 months off today. I have had some ok days, and plenty of bad ones feeling really ill all day. Earlier in the month I had massive anxiety, but that's mostly better again.

I've been living independently for a few weeks.

The ok days are a good sign, but they're few and far between. Today I have been awake since 3am.

I'm moving forwards all the time, but it's so slow and it has been so long. I can't really move forwards with life, I spend most of my time just making it through the days feeling terrible. Hopefully if I keep moving forwards month by month, I will be generally ok.

It's ridiculous how badly I've been affected and for how long after short term use.

You are a true hero in my book @Luke going through this for 3 years and 5 months, from what I've been reading Mirtz is definitely a nasty one to overcome and for the body to heal.i too still get the 2:30 too 3am cortisol wake up and then can't get to sleep, but my alarm goes off for work at 4am. Absolutely agree with the slow healing process, if we could all figure out the when in full recovery it would be more bearable. It's really good to hear your having more o.k, days. Definitely alot of healing is happening, it would be great if it wasn't so darn uncomfortable though. You absolutely inspire me with having to deal with this healing process, working and then running this site which we are all so grateful for and your compassion and thoughtfulness helping so many here.

I'll pray for a very needed window of relief you. Hope your day gets better.

Hugs my friend xxx Bernadette 🤗

Yeah I was only on my drug full dose for less than a month and a quick 75% drop completely mangled my brain ... about two years before I was remotely well again. My nervous system was already fried for other reasons going into this, but it was the dose drop that did me in.

If there's windows then you're getting better. Since you were able to get this site going through your suffering for the greater good, which the vast majority of people don't have the gumption to do at their best and healthiest, imagine your power once those neurons are all settled.

14 minutes ago, N2deep said:

Yeah I was only on my drug full dose for less than a month and a quick 75% drop completely mangled my brain ... about two years before I was remotely well again. My nervous system was already fried for other reasons going into this, but it was the dose drop that did me in.

If there's windows then you're getting better. Since you were able to get this site going through your suffering for the greater good, which the vast majority of people don't have the gumption to do at their best and healthiest, imagine your power once those neurons are all settled.

I hear ya @N2deep I was only on them for 3 months, and about 7 months to taper which I know now was way to fast and now nearing my 2 year mark, these drugs should be banned. But for now we all continue to heal in what seems like a snail's pace, I'm at a point where I've just accepted and now we all here will be blessed by the abundance of strength and health and nothing, I mean nothing will ever break us again. So here's to all the most beautiful, caring and compassionate people I know on this site we will all heal. ❤️

Hey @Luke !

Good to hear from you!

“Earlier in the month I had massive anxiety, but that's mostly better again. I've been living independently for a few weeks.”

I’m glad to hear this part! Baby steps forward even when you’re in the midst of a wave is still movement towards improvement!

I’m sorry that you are having trouble with your sleep. I know how that can exacerbate the feeling. I hope you get better rest tonight ❤️

Progress happens quietly from day to day, but when you look back at your starting point, you can hopefully see just how much has changed.

Rooting for you and everyone else going through this painful process.