17 hours ago, HopeOfHealing said:

For those who experienced withdrawal insomnia this severe, what actually helped? Did anyone use low-dose melatonin or an antihistamine? Did it help or make the hyperarousal worse?

On 9/18/2026 at 9:56 AM, Luke said:

Do you have any thoughts on the numerous pieces of advice on sleep hygiene that you've been provided with and are you putting these into practice?

Will you be interacting with others on their threads as a more productive means of connecting with and relating with others outside of this anxious, question and answer loop, and seeing that actually the symptoms you're asking about daily are very common, as previously suggested? No posts have been made on any thread other than this one.

@HopeOfHealing how are you? Is your sleep any better ? Depression a bit lifted ? Hope you are doing ok.

I’ve been really bad lately. Last week I had several zero-sleep nights, and on the other nights only brief periods of fragmented sleep. It became so unbearable that during the night my husband was putting a wet towel on my face just so I could lie there and exist.

Things kept getting worse, so my husband found a good doctor in Lithuania through friends. We drove there and talked for about two hours. He felt the anxiety, hyperarousal and sleep deprivation were severe enough to consider hospitalisation, which would likely mean starting escitalopram or something similar together with benzodiazepines initially.

Because of my previous severe benzo dependence and withdrawal, I was terrified of that option. We discussed alternatives and eventually agreed to try 7.5 mg mirtazapine, as low-dose mirtazapine had previously given me deep sleep and significant calmness.

I hear what people here have told me about reinstatement. I really did try to continue without medication and let this setback pass. But the situation became completely outside my control and incredibly frightening. Night after night I was exhausted but unable to switch off, with extreme hyperarousal and inner restlessness. I literally started feeling like every day could be my last. I want to live and get my life back, but I reached a point where I simply could not keep enduring that level of suffering.

Unfortunately, the first night on mirtazapine wasn’t what I hoped for. I slept somewhat, but woke repeatedly with fear, racing thoughts and akathisia-like restlessness. Today I feel strange and disoriented, have difficulty focusing, sounds feel overwhelming, and I have strange sensations throughout my body.

The doctor suggested trying another night to see whether things settle. I’m scared because I had hoped mirtazapine would restore enough sleep to stabilise me and that I could eventually taper very slowly.

I know restarting may not have been the choice some of you would have made. I wasn’t ignoring what you told me. I was trying to survive a situation that had become more frightening and unbearable than anything I had experienced before. Now I’m trying to figure out the safest way forward from here.

Please, please, don't see me as a failure. I am trying my best to survive to be able to be there for my kids and my family.

@HopeOfHealing you are certainly not a failure, and I understand how desperate you must have felt to try drugs again. But I really don't think this is the answer, and I'm very worried that the mirtazapine is only going to make you worse. I see in your signature that you tried mirtazapine as recently as 2024 and appear to have tapered off because of paradoxical effects and severe adverse effects. In WD our nervous systems are extremely sensitive and we often have very unpredictable and often adverse reactions to even small doses of new psych drugs. I say this as someone who has experienced it myself. Doctors do not understand this, which is why they continue to prescribe drugs to "treat" WD symptoms, as yours did in this case.

You already appear to be reacting badly to the mirtazapine. I would strongly urge you not to take any more of it. Things can absolutely get worse than they have been. You will heal without drugs, time and patience is the way.

@HopeOfHealing You don’t owe any of us an explanation. You are in charge of your body and medical decisions. No one is graded here and I wouldn’t look at it in terms of failure. It’s about making decisions that lead to stabilization. Additional meds can cause a worsening of symptoms, unfortunately. Time and patience is what heals.

@HopeOfHealing You are injured by these drugs, adding in more drugs will likley make you worse. Going to see a doctor is only ever going to lead to more drugs unfortunately. This is of course your choice as we respect that. You came back and asked for advice on how to proceed, mine is the same as Sarahs, don't take anymore drugs, stop trying to fix this, you will imo just make it worse. Time is your friend, we must learn to cope as we heal. I know what Mirtazapine did to my amazing little mind, it caused and still is causing me much suffering, I will NEVER return to these poisons again, they are not the answer, never have been, never will be. xxxx

Please help if you have any experience or suggestions.

I’m writing as her husband because things have become extremely difficult.

As she wrote previously, her sleep deteriorated significantly. We kept trying to manage it without medication, but around week 5 she started having nights with zero sleep, followed by nights with only 1–2 hours of fragmented sleep. Eventually we became genuinely frightened for her health. At night she described unbearable pressure in her head, as if it were going to burst, and the days became increasingly difficult to endure.

We eventually contacted a psychiatrist.

We first tried mirtazapine 7.5 mg for two nights. Sleep was not particularly good and was even worse on the second night. We were reluctant to increase the dose because, unlike in the past when mirtazapine was strongly sedating for her, this time it seemed to cause very unpleasant activation/restlessness.

We then tried quetiapine and Esogno (eszopiclone). Even at only 12.5 mg, quetiapine seemed to cause severe daytime akathisia/restlessness. Eszopiclone appeared to increase her anxiety, and because she has a history of benzodiazepine dependence/withdrawal, we are frightened of continuing down that route or increasing the dose.

Three days ago she started Valdoxan (agomelatine) 25 mg. Her psychiatrist suggested it because it may help regulate sleep and is a relatively selective antidepressant that is generally considered well tolerated. We also found some encouraging experiences online.

The second night she actually managed to get some sleep, although she felt very foggy and sedated during the following day. After the third night, however, sleep was either almost nonexistent or so shallow that she barely perceived herself as sleeping.

Today she describes a very disturbing state where even after getting out of bed she does not feel properly awake. She feels as though she is half asleep/half awake, extremely exhausted and cognitively impaired, yet still unable to properly sleep or relax.

If anyone has experienced anything remotely similar, please share what helped or what eventually happened. We understand that nobody here can give medical advice. We are looking for experiences, ideas and possible directions to investigate.

At the moment it feels as though none of the medications that would normally help with sleep are working properly or are tolerated. Perhaps Valdoxan simply needs more time, but her current state is so severe that she is suffering minute by minute and is essentially unable to function. I am staying with her almost constantly.

I still believe this originally started as another severe insomnia/hyperarousal wave, but it seems to have spiralled completely out of control. We are now genuinely frightened and wondering how people get out of a state like this.

Hospitalisation has been discussed, but we are very concerned about aggressive antipsychotic treatment because of how strongly she reacts even to very small doses. At the same time, we are struggling to see what alternatives remain.

If anyone has experienced severe insomnia combined with extreme medication sensitivity, paradoxical activation, akathisia, or the strange “half asleep but unable to sleep” state, we would be extremely grateful to hear what helped and whether you eventually recovered.

We would also really appreciate hearing from anyone who has tried a DORA such as daridorexant (Quviviq), lemborexant or suvorexant, especially with severe hyperarousal or medication sensitivity. Did it help when Z-drugs or other sleep medications failed, and how was it for anxiety and next-day functioning?

2 minutes ago, HopeOfHealing said:

I’m writing as her husband because things have become extremely difficult.

Hey

I am very sorry to read about what a hard time Hope is having. It really brakes my heart.

My perspective is inline with what you have said here.

3 minutes ago, HopeOfHealing said:

still believe this originally started as another severe insomnia/hyperarousal wave, but it seems to have spiralled completely out of control. We are now genuinely frightened and wondering how people get out of a state like this.

A nasty wave that appeared after a period of being better, who knows what triggered it, it kinda doesn't matter in many ways, it's here.

Unfortunately in our experience when the nervous system is injured it needs lots of time to heal, in a waves and windows pattern that is not linear and can be unpredictable too. Adding in more drugs to look for a solution (whilst complely logical) seems to only make the situation worse as you seem to be discovering unfortunately.

Medical professionals have no other levers to pull other than more drugs, going to hospital will be the same I am afraid.

If it were me as she has not been taking any of these drugs for very long, I would stop taking them. The longer she takes them the more dependance will kick in and then there will be a whole additional problem of trying to taper off them whilst recovering from this injury.

Lots of time and patience is what is needed to heal the sleep injury. It will heal, I am recovering from a Mirt injury too and suffer alot still with sleep issues. Nothing has helped but time unfortunately. We have spoken with hope alot about mindset changes and learning to suffer well and trust her system to sleep enough even if it doesn't feel good. This is where I would spend the most time learning and researching these skills. I know letting go is so hard, but in my experience that is all there that helps. Acceptance is a very powerful tool, just not an easy one to implement.

Please keep us up to speed with how she is doing and what you decide to do.

Chippy

Thank you @Chippy for the response.

1 hour ago, Chippy said:

Unfortunately in our experience when the nervous system is injured it needs lots of time to heal, in a waves and windows pattern that is not linear and can be unpredictable too.

I understand that, have been reading about it quite a lot too, however, the situation got to a point where the sleeplessness was unbearable and we needed a solution.

1 hour ago, Chippy said:

Adding in more drugs to look for a solution (whilst complely logical) seems to only make the situation worse as you seem to be discovering unfortunately.

We talked to multiple doctors, to see if they understand the situation and would be willing to take a very careful approach. We settled on one doctor who is essentially available for us daily for check-ins. What we agreed with the doctor is to take a veery careful approach. We started with just adding 12.5mg Quetiapine to help her relax before sleep and Esogno (eszopiclone) ONLY as a rescue if at night the she wakes up or still hasn't fallen asleep by 3am. Quetiapine seemed to help to fall asleep, but had a kickback later in the night. And at a higher dose it gives terrible akathisia. Esogno knock her out, BUT in the morning it comes with a terrible anxiety.

1 hour ago, Chippy said:

If it were me as she has not been taking any of these drugs for very long, I would stop taking them. The longer she takes them the more dependance will kick in and then there will be a whole additional problem of trying to taper off them whilst recovering from this injury.

The plan was to stabilise the sleep at least for a bit and get off, but the drugs were making things very unmanageable. Now we switched the approach to Valdoxan (agomelatine) 25 mg. It uses a different mechanism and concentrates on sleep and anxiety and has said to be a lot more milder in terms of side-effects as well as withdrawal - at least that is what I found in a research paper coauthored by Mark Horowitz so I feel like there is some credibility to that. She has used it for 3 days now. Initially sleep seemingly did improve, but last night was again a drop backwards. All my research says that this can happen and that we should allow the medication to work for 1-2 weeks to properly judge its effects. Sleep should improve over time.

Other than that I have heard about DORA(Quviviq), but it is not sold in our country. I could, however, try to get it from a neighbouring country. Agan, research shows that this might have less side effects.

I understand that the suggestion would be to stop using the medication, but at such sleep deprivation it is very difficult to take this on! The plan was, get some sleep, get off the meds, but not yet working according to the plan.

3 hours ago, HopeOfHealing said:

I’m writing as her husband because things have become extremely difficult.

Hi, thanks for writing to us on @HopeOfHealing's behalf.

I'm sorry things have gotten so hard. I understand that the sleep was becoming really bad in her wave, including nights with zero sleep, and that you both felt she couldn't endure any longer without drugs. I do want to emphasize that there are several people on this forum who haven't slept much at all for stretches of time -- it is torturous at the time, but they do get through it and go on to sleep more. There are also many success stories out there of people who have recovered from protracted withdrawal who describe sleeping very little in waves, sometimes for months at a time.

This is all just to say that it is absolutely possible to recover from severe sleep issues brought on by withdrawal or drug injury without drugs.

I understand that you've done a lot of research into drugs that are supposed to have milder side effects, less withdrawal effects, and/or be tolerable for people with drug sensitivities. Unfortunately, and I think as you're discovering, this often doesn't apply to people with nervous systems that have been hypersensitized by withdrawal. Our nervous systems can react completely unpredictably to any psych drug, and what we see in the community is that most often adding in more drugs just makes things worse. I say this from personal experience as well, as I also went through a period of trying to treat withdrawal symptoms with more drugs, and eventually had to accept that I was only harming myself more.

Unfortunately, with a few exceptions, even the doctors who claim to be knowledgeable about withdrawal and sensitized nervous systems don't really understand and will simply try to push more drugs to solve the problem. As you're discovering, this standard method of cycling through different drugs trying to find the "right" one can be very distressing and harmful.

I have to emphasize what Chippy said above, which is that only time, patience and acceptance can help with sleep issues caused by withdrawal. Although it can take a lot of time, what we see is that almost everyone who stays off psych drugs heals in time. @HopeOfHealing is not the exception to the rule -- she will heal too, given the space to do so.

Please let us know how things go 💜

1 hour ago, HopeOfHealing said:

the situation got to a point where the sleeplessness was unbearable and we needed a solution.

The issue is as you have found out more drugs is not the solution and makes things worse.

Throwing more drugs at the situation I think is unlikely to yield better results. The most heart breaking part of this is they are very possibly making this worse.

I have a huge amount of respect for Dr H and I know that he at times tries drugs to help those who are desperate. What I would say is that just because he is amazing and supports this community, does not mean he has found some magic pills that will sort things out for folk. If that was the case we would all be ok now and not suffering. He cannot know what another drug will do to hope, he is only really doing the same thing other doctors do and keeps trying more and more drugs in the hope something sticks. He may have some cases of it helping, but I doubt enough data for things to be consitent, and certainly not any guarantees it will work for Hope. I really hope it does, if you decide to continue with this route, work for her, however as desperate as you are, eventually we all have to accept that time is the only healer here.

I want to say how amazing you are! Hope is so lucky to have a partner who is so incredibly support of her, your efforts into research, she references you egularly in her posts telling us how supportive you are. Amazing. Not everyone is so lucky. Thank you for being one of the good ones!

Thank you for the kind words.
I understand the idea, but the big question is - ok.. stop the drugs, but what to do then? How to sleep? I honestly don't have the answer and I understand that to my wife that feels like torture.

2 minutes ago, HopeOfHealing said:

Thank you for the kind words.
I understand the idea, but the big question is - ok.. stop the drugs, but what to do then? How to sleep? I honestly don't have the answer and I understand that to my wife that feels like torture.

I know it’s hard. It’s never a nice experience. It’s just think of it the other way. If there is no other way through this than through the middle. What choice is there? That’s where we all get to eventually.

With sleep it’s about accepting how awful it is. Learning to not care if you sleep or not. It’s truly an awful thing to have to ask of a person. When the alternative is making things worse. Eventually you have to accept the situation and just ride it out. How ever bad it gets. The body won’t not sleep. It will always sleep. Just not well enough. It can go a long time without any sleep. And eventually it will just sleep. Slowly slowly things start to improve. A little bit at a time. Mindset is so important because if you don’t get that right you’ll make the sleep issues worse. Resisting is the opposite to accepting. Accepting is peace. Peace is what the nervous system needs to sleep. If you get frustrated you’ll never sleep. Learning to be ok with not sleeping makes this not an issue.

I’m sorry. I know what I’m saying sounds brutal. But that’s the barefaced reality of the situation in my experience.

13 minutes ago, HopeOfHealing said:

Thank you for the kind words.
I understand the idea, but the big question is - ok.. stop the drugs, but what to do then? How to sleep? I honestly don't have the answer and I understand that to my wife that feels like torture.

Sorry to hear her struggles. It is hard, and she does need support at this time. We all have been there. Unfortunately, doctors keeps giving prescriptions that just won't work due to a sensitive nervous system. It puts more fire to the situation. The psychological issues that comes from not sleep, it's really hard to accept, but the only way out is to hold, accept, and be patience to allow the body to do its natural recovery and healing process. When I was with no sleep at all, I just learn to listen to music, put podcast that won't trigger fear, or watch something in tv that was entertaining with no violence or anything, and many prayers. As I did not put or make any changes, I started to sleep one hour at least. In time, it got to two hours until I reached at least 5 hours. The cortisol spike gets messed up on these drugs. And as bad withdrawal is, it's when the body is actually healing and it's trying to reversed all the damage caused by the medication.

No body should go through this journey. This is inhumane and unfortunately, doctors are just trained to prescribe.

Support her all the way and allow time. Do not take or add medications that will only add fire to a system that it's trying to heal.

It also helps to do many outside walks....

Prayers for you all. But please support her. Her journey and pain is real...

Thanks @Chippy and Raymond

@Raymond did you really sleep for just 1h for an extended period of time? How is that humanly possible? My wife had few such nights and I saw how life exited her eyes. Like a zombie. And I cannot imagine her surviving like this for long.

One thing is acceptance of lack of sleep, but what seems to happen is that the bad sleep triggers fear, which triggers anxiety, which then triggers more bad sleep and we go into a endless evil loop. And that fear and anxiety it seems to be out of her control. I can see it in her eyes. As much as she prays or tries, I see that few minutes later the fear is back. Double. And I can say what I want, suggest to accept it, to let it go, but it is not easy for her.. Damn, wouldn't be easy for me too to be honest. She is a trooper.

4 minutes ago, HopeOfHealing said:

did you really sleep for just 1h for an extended period of time?

@HopeOfHealing s other half, to share my own experience if it helps.

When I first stopped Mirt, I didn't sleep hardly at all for a few weeks. I decided I would go to bed at the same time each night, set and alarm and lie there until the alarm went. I did this day in day out, I would ask my wife how can I cope with this, how can I keep going. It was awful. Eventually that sleep turned into a very strange red mist sleep, I can't really descibe it better than that, like I wasn't really asleep but was at the same time. Some how it was restful and I don't know how it was to this day. I think this was emergency sleep kicking in. After some time I started to get normal sleep. But very broken. Sometimes 5 hours, sometimes I would wake every hour. Slowly it has improved. It has taken some time.

9 minutes ago, HopeOfHealing said:

One thing is acceptance of lack of sleep, but what seems to happen is that the bad sleep triggers fear, which triggers anxiety, which then triggers more bad sleep and we go into a endless evil loop. And that fear and anxiety it seems to be out of her control. I can see it in her eyes. As much as she prays or tries, I see that few minutes later the fear is back. Double. And I can say what I want, suggest to accept it, to let it go, but it is not easy for her.. Damn, wouldn't be easy for me too to be honest. She is a trooper.

What you are talking about here is exactly what I was refering too. Second fear. It is because she won't accept. She says she is but she isn't she is trying to accept. Accepting is not resisting and not trying. She must totally and 100% let it go. Stop caring, give up. Radically don't care if she sleeps. If she can do it, it will calm the fear you talk about here. This is the key. It is so hard, but she can do it. It is in all of us to cope with this stuff. Its not fair and it's beyond anything we have had to deal with before, but she can do it. It will unlock everything. I just felt I had hit rock bottom, like I no choice but to submit and give up almost. She has to be there.

I did a Cognitive Behaviour Therapy for Insomnia workshop last year. They suggest not using anything like a smart watch to track sleep hours or geart rate because it can set a "standard" that people feel they must meet, and actually makes anxiety worse. Also, set yourself a challenge NOT to sleep. Try to stay awake all night. And, keep your eyes open. Pretend there is a gun to your head and you must keep your eyes open. This tricks the mind into not trying too hard to sleep. It is called a paradoxical intervention.

2 hours ago, Chippy said:

very strange red mist sleep

@Chippy This seems very much like what she has been experiencing, although it is not really restful, which then spikes the anxiety and the fear and then it all goes into a loop.

2 hours ago, Chippy said:

This is the key. It is so hard, but she can do it. It is in all of us to cope with this stuff. Its not fair and it's beyond anything we have had to deal with before, but she can do it. It will unlock everything.

We are people of faith and this does speak to me. Put trust in God, and say - may things happen your way. Problem is that she is alway a very logical person, so she always needs a plan, alway needs an explanation and this is going against everything she is.

And the most difficult for her (before and while using medication) is this head feeling. She describes it similar to akathisia but in the head. It started after several bad sleep/no sleep nights. She describes the feeling like ants in the head. Like noise. Like this pressure that starts. And it comes and goes in waves throughout the next day after the bad sleep. This then creates a lot of fear and the feeling of "I am losing my mind". And I mean.. I am next to her and I can see that she is not loosing her mind. Just objectively this head akathisia feeling create so much stress. She describes as it is sometimes so intense that "you want to drill a whole in the head to release pressure" or. "that she wants to run in to the wall with her head to get rid of it".

And to add to the fear, doctor says that this is caused by lack of sleep. So we are in another loop - lack of sleep causes head akathisia > head akathisia causes fear > fear causes sleep issues and etc. Seven circles of hell.... :(

2 hours ago, Sminismoni said:

yourself a challenge NOT to sleep.

@Sminismoni this is an interesting one. I will see if she is willing to test this.

@HopeOfHealing's husband, don't give up. I have suffered from awful sleepiness since 18 months after the CT prescribed by my psychiatrist. After stopping the last antidepressant 7 months ago the insomnia became worse. My sleep is broken, I am awaken every 90 minutes by hot flashes, sweats, sense of terror, nausea. Around 5 a.m. the feeling of dying becomes unbearable and I cannot stay more in bed, it is a true horror. As Hope, I am very logical person and for that I known that my CNS is incredibly sensitized. It cannot handle more drug or supplement. The unique healer is the Time. I know and feel very well the struggle of Hope, I have been in the same nightmare 18 months: agony, inner akathisia, severe depression, hellish anhedonia, anxiety, brain fog. It is not a life, but we don't have any other choice, we have to persevere and trust our brain which tries to reach the homeostasis. I read recovery stories where some people had to endure this Hell 25-30 months before starting to feel some improvement.

I'm sorry she is suffering, and this must be very difficult for you as well.

Please do not interpret any of this post as blaming you or her for what is happening. I am simply going to try to spell things out as clearly and plainly as I can, because what you need right now is clear information. If you disagree with what's being said by me/us, that's absolutely your prerogative, but at least then you know what we think, clearly.

We put considerable time and effort into warning her that continuing to dabble with these drugs in an attempt to find symptom relief when already harmed by these drugs often:

1. causes further harm

2. is fickle in terms of even providing the sought-after relief and people often don't react to further drugs in any kind of predictable way

3. often leads people to get into a cascade where they try more and more drugs, compounding the harm

We provided these warnings because it is something we have seen happen to so many others, and there were even members who have had it happen to them also trying to provide these warnings.

I think it's fair to say that this is exactly what has now happened.

21 hours ago, HopeOfHealing said:

Please help if you have any experience or suggestions.

My suggestion would be to stop throwing more and more drugs at this. It's not working, it has very clearly made everything worse, and the more you do it, the riskier it gets.

21 hours ago, HopeOfHealing said:

If anyone has experienced anything remotely similar, please share what helped or what eventually happened. We understand that nobody here can give medical advice. We are looking for experiences, ideas and possible directions to investigate.

Eventually, people who stay off of these drugs typically recover in time (albeit with a lot of difficulty and suffering). People who keep throwing more and more drugs at the problem tend to be exactly where they were after that amount of time, or worse.

21 hours ago, HopeOfHealing said:

At the moment it feels as though none of the medications that would normally help with sleep are working properly or are tolerated.

Yes, and it is likely that if you continue to try further drugs, they will also be reacted to in unpredictable, "abnormal" ways. What we have observed is that the more people try in short succession, when already seriously destabilised by other drugs, the more this occurs.

21 hours ago, HopeOfHealing said:

I still believe this originally started as another severe insomnia/hyperarousal wave, but it seems to have spiralled completely out of control. We are now genuinely frightened and wondering how people get out of a state like this.

It has quite clearly spiralled out of control because of the drugs that have been thrown into the mix.

People typically get out of a state like this by not continuing to do the thing that is making it worse, repeatedly, and going back to letting their body and brain recover naturally. This takes time, possibly more time given the setback and destabilisation caused by further drugs, but that's the "fix" nonetheless.

To be frank, it's quite likely that she wasn't that far off from doing quite a bit better. Setbacks in recovery are pretty common and I think one of the most important things you can both try to do is getting out of the mindset that there's a magic fix that makes things better tomorrow, because attempts to find this are likely to sacrifice the potential she had to be considerably better in months down the line.

We've seen plenty of people turn promising signs of recovery in the medium term into serious long term harm by going down the road you're currently on.

Overall before this recent "wave" she'd been considerably better, she hadn't posted on this forum for months, and was within a timeframe where it's utterly normal to have setbacks if you've been doing better, and to be totally clear actually at less than two years off having extended periods where things are not that bad at all is very promising progress and a setback of some weeks doesn't change that at all.

There was a very real chance, before introducing a range of new drugs, that in a few weeks or a couple of months sleep would have returned and she would have been making great progress again.

Again, the only thing that reliably works for getting out of a state like this is time off of drugs and riding out the setbacks. She'd put 20 months of time in, and had a setback after long periods of being much better.

I think it's pretty clear that attempting short term fixes for short term setbacks just causes harm. If you don't agree with this, then I'm not sure what else we can say.

21 hours ago, HopeOfHealing said:

We would also really appreciate hearing from anyone who has tried a DORA such as daridorexant (Quviviq), lemborexant or suvorexant, especially with severe hyperarousal or medication sensitivity. Did it help when Z-drugs or other sleep medications failed, and how was it for anxiety and next-day functioning?

We have an actively posting member who has had a significant setback from this, after insisting that they would not and they wanted to try it anyway after we advised that it was risky based on others in the past on various support group also experiencing significant setbacks.

I've said this already, but I really have to emphasise it:

There is no magic drug that will fix this today, and introducing any additional drugs is not only risky, but quite likely to make everything worse.

You've tried introducing FOUR new drugs. Things have gotten worse and worse. The question I'd ask of you is: How many more new ones and how much worse would she need to get before you'd recognise this pattern and stop it?

You'll have to trust me on this, it can get a lot worse than anxiety and insomnia and you do not want to find that out the hard way.

You asked for suggestions. My suggestion is to immediately cease hunting for further drugs that will theoretically work as a magic fix, stop taking the myriad of ones that have just made everything much worse, and accept that things will probably still be tough for some time but hope that in time she recovers out of it.

20 hours ago, HopeOfHealing said:

I understand that, have been reading about it quite a lot too, however, the situation got to a point where the sleeplessness was unbearable and we needed a solution.

Well, now having thrown a range of drugs at the problem, it's even more unbearable. There are two choices:

1. Try to bear the unbearable until it is again bearable

2. Keep experimenting and risk ending up much worse, and much worse than unbearable is not a good place to be

20 hours ago, HopeOfHealing said:

All my research says that this can happen and that we should allow the medication to work for 1-2 weeks to properly judge its effects. Sleep should improve over time.

All of your research is based on heavily biased trials performed largely by pharmaceutical companies who want to sell their drugs, and said trials are not performed on people in your wife's situation where reactions to additional drugs are very likely to be abnormal and different to what is typical.

20 hours ago, HopeOfHealing said:

I understand that the suggestion would be to stop using the medication, but at such sleep deprivation it is very difficult to take this on! The plan was, get some sleep, get off the meds, but not yet working according to the plan.

We repeatedly warned that the plan to fix weeks of sleep deprivation might lead to months or years' worth of much more significant harm, and that considering that, things were unlikely to work according to this plan and that we'd seen people attempt such plans time and time again and that this is what that is based on.

Now things are not working according to the plan. My feeling is that you want to continue down this path and want us to tell you that this path is a good one. It isn't. Once harmed by these drugs, adding in further ones is dangerous and does not work how it "should".

You're experiencing them not working how they should, and are getting a small flavour of the danger this presents in terms of seeing her deteriorate. We're warning you that this deterioration is the tip of the iceberg in terms of how bad it can get if this danger is not heeded and you keep going down this path.

I have personally observed this exact pattern multiple times, as have many others here. We're currently helping multiple people who made bad symptoms far worse searching for chemical relief. You're going down that path. I suggest you stop.

13 hours ago, HopeOfHealing said:

@Chippy This seems very much like what she has been experiencing, although it is not really restful, which then spikes the anxiety and the fear and then it all goes into a loop.

When you lift the lid on sleep it turns out it is WAY more complex then how many hours did you get. The reality is not understood by ANYONE. When you have had Mirt sleep injury to contend with, you really get to see behind the curtain. You have to experience it to understand.

13 hours ago, HopeOfHealing said:

We are people of faith and this does speak to me. Put trust in God, and say - may things happen your way. Problem is that she is alway a very logical person, so she always needs a plan, alway needs an explanation and this is going against everything she is.

This may be all you need tbh. If she can truly give this up to God and trust him to heal this, we almost don't need to say much more. Just have Faith.

13 hours ago, HopeOfHealing said:

And the most difficult for her (before and while using medication) is this head feeling. She describes it similar to akathisia but in the head. It started after several bad sleep/no sleep nights. She describes the feeling like ants in the head. Like noise. Like this pressure that starts. And it comes and goes in waves throughout the next day after the bad sleep. This then creates a lot of fear and the feeling of "I am losing my mind". And I mean.. I am next to her and I can see that she is not loosing her mind. Just objectively this head akathisia feeling create so much stress. She describes as it is sometimes so intense that "you want to drill a whole in the head to release pressure" or. "that she wants to run in to the wall with her head to get rid of it".

And to add to the fear, doctor says that this is caused by lack of sleep. So we are in another loop - lack of sleep causes head akathisia > head akathisia causes fear > fear causes sleep issues and etc. Seven circles of hell.... :(

I too am a logical person, who likes a plan. A logical person who likes a plan, who spends much time in this, understands that fixating on a new drug to cure this is no longer the logical thing to do. It was before we did our research and learned what we know now.

I set out to heal myself too. I am good at figuring new things out. So when I say do nothing, that isn't lazy or blind.

I often have people present on here to us, 'I tried this' or 'I know whats wrong with all of us' or' lets fixate on a symptom and somehow that will help'. When I say that that approach is just fixing, I can tell they don't listen, as that would mean they would have to let go of control. And they are not ready to do that. I've seen people fly to other countries to 'try' procedures, that lead them nowhere and no doubt cost huge amounts of money.

The logical conculsion that I have come to with much much thought and time in this, is: Drugs make us work, most supplements make us worse, fighting this makes us worse, time heals us, very slowly but it does.

At night she needs to remind herself this is WD, an injury, she can't control it.

Normal Insomnia is anxiety driven, for those folk, when they do fall asleep they sleep.

For us we have to deal with:

-Struggling to fall asleep through poor circulation of the chemicals that sleeps needs

-Awful night time symptoms like brain zaps and head pressure and a multitude of other things.

-Then once we are alseep we are woken reguarly in a hot sweat from vivid dreams with yet another seemingly full bladder, often every hour, until eventually there is nothing left in the tank,

-Then we have to endure the following day exhausted. Its truly is awful.

There is nothing we can do other than accept this. We are not doing this to ourselves, we are harmed, and we trust our bodies to heal. This fact in the start really calmed me down at night, as I knew I had done all that I could. Acceptance is peace, that is all the nervous system needs.

So Hope needs to understand that the only logical thing to do, is have a plan, and that plan is, no more drugs, lots of time, faith, trust in the body, learning coping skills to survive the harder days. Eventually this will pay off. My logical over planning brain has come to the only conclusion it could and just go, 'I am purposely doing nothing.'

Unfortunately with psychiatrists, when the only tool you have is a hammer, everything is a nail. They are only going to prescribe more meds, which can be very destabilizing in Hope’s current state. I’m very sorry she is going through this and I can tell you desperately want to help her.

I think the belief that the sleeplessness is unbearable and dangerous needs to be challenged. Time, not additional meds, can turn this around. Yes it’s miserable, but work on improving the beliefs around it. Tolerance and grit. She can do this. It will improve with time and patience. This needs to be a solid belief that all decisions are built upon.

So many here have poor sleep. It’s a very common problem. Reframe the goal to tolerate poor sleep, rather than judging success in how many hours of sleep she is getting.

On 10/1/2026 at 10:37 AM, HopeOfHealing said:

Thanks @Chippy and Raymond

@Raymond did you really sleep for just 1h for an extended period of time? How is that humanly possible? My wife had few such nights and I saw how life exited her eyes. Like a zombie. And I cannot imagine her surviving like this for long.

One thing is acceptance of lack of sleep, but what seems to happen is that the bad sleep triggers fear, which triggers anxiety, which then triggers more bad sleep and we go into a endless evil loop. And that fear and anxiety it seems to be out of her control. I can see it in her eyes. As much as she prays or tries, I see that few minutes later the fear is back. Double. And I can say what I want, suggest to accept it, to let it go, but it is not easy for her.. Damn, wouldn't be easy for me too to be honest. She is a trooper.

@HopeOfHealing . In the beginning, i couldn't sleep at all, just as many as all of us here. These withdrawals affects sleep and Cortisol. I remember that I was even scared to my own bed. Night will come and I was feeling afraid to even be in my own bed. One day, I was in my couch and started to feel tired and sleepy. The minute I went to my bed, sleepiness will just disappear. I spent all nights trying to fall off sleep. Feeling burning sensation, anxiety, panic, etc..and just couldn't go to sleep. I did few tricks. I was noticing that I was getting tired on my couch, so I decided that instead of going to my bed, I will just stay in the couch. I got to sleep and hour at least before waking up in panic again. Then, if I needed to be in my bed, instead of fully laying down, I will just sit there and lay down a little bit on my back. It did a little trick to my brain, but again, I was able to sleep only like an hour.

It is a terrible journey and the psychological issues that it brings are real, but I have to manage all and survive my terrible months. I even have to go and work to provide to my family. I had one thing in my mind and it was that if others were able to get out, I can do it too.

I continued holding my reinstatement dose of 5mg paraxotine since I did a cold turkey, but I reinstated like three weeks later when I found the support group. I listed to this group every day. I managed to avoid other medications, supplements, etc. I did not want to add more fire to the issue and just tried to do the best I could to get out of this mess.

After 5 months, I started to sleep two hours, but always waking up at 5am. I still can't passed this time, and only few instances, I was able to sleep until like 8am. This is rare for me... Then, I started to listen to my body. If I was in my couch and I was feeling tired and sleepy, I will just stay there and let the body just go to sleep. Eventually, 7 months later, I was able to at least sleep 5 hours. At 22 months journey, I sleep on average of 6 to 7 hours and I still wake up 5am. I just go to sleep around 10pm, so I can get enough sleep. Only three weeks ago, I started to fall asleep y hours straight without waking up between 10pm to 5am. However, in the last few days, I went back to cortisol issues and waking up couple of times during the night... However, the cortisol, anxiety, intrusive thoughts and the psychological issues are weaker. They don't bother me much anymore.

I can say that at 22 months, and still on my reinstatement dose now on 4.66mg, I am 80% recovered. I still a long way to go, but it's a slow process and stability it's my goal first. I'm holding as much as I can to allow my system to stabilize a lot better before continuing tapering.

Now, someone who does cold turkey and can't reinstate will have a terrible journey as well. Either way, we all had those terrible symptoms your wife is experiencing. We all had to find ways to a change our mentality to bit this symptoms. The reason for the symptoms is because the body is trying to heal and recover from the harm of these medications.

Putting more drugs to find release will not help at all. The best way, unfortunately, is to ride the wave. We all have learned to ride this wave and your support to your wife at this time is very important. What we go through, I will not even desire to my worst enemy. The symptoms are real and unfortunately, majority of doctors don't know or don't believe which they end up prescribing more medications that will not work.

This is what I did during my terrible sleepless nights...

1. Change my mind set and accept it. This will not kill me and eventually, my body will fall asleep.

2. For sleepless nights, I put classical music, listen to podcasts or something none violent.

3. Sit on my bed instead of fully down.

4. Read my Bible and pray.

5. Learn to trust the process and believe it.

6. Wife support me by listening and gave me courage to continue moving forward.

7. Set my weak mind to be stronger and not to allow this to bit me.

8. Meditation under the shower

9. A lot of walking outside.

10. Read books and got cognitive behavioral therapy to cope and accept symptoms. It helped me and still helps.

11. Feel, accept, and float.

51 minutes ago, Raymond said:

@HopeOfHealing . In the beginning, i couldn't sleep at all, just as many as all of us here. These withdrawals affects sleep and Cortisol. I remember that I was even scared to my own bed. Night will come and I was feeling afraid to even be in my own bed. One day, I was in my couch and started to feel tired and sleepy. The minute I went to my bed, sleepiness will just disappear. I spent all nights trying to fall off sleep. Feeling burning sensation, anxiety, panic, etc..and just couldn't go to sleep. I did few tricks. I was noticing that I was getting tired on my couch, so I decided that instead of going to my bed, I will just stay in the couch. I got to sleep and hour at least before waking up in panic again. Then, if I needed to be in my bed, instead of fully laying down, I will just sit there and lay down a little bit on my back. It did a little trick to my brain, but again, I was able to sleep only like an hour.

It is a terrible journey and the psychological issues that it brings are real, but I have to manage all and survive my terrible months. I even have to go and work to provide to my family. I had one thing in my mind and it was that if others were able to get out, I can do it too.

I continued holding my reinstatement dose of 5mg paraxotine since I did a cold turkey, but I reinstated like three weeks later when I found the support group. I listed to this group every day. I managed to avoid other medications, supplements, etc. I did not want to add more fire to the issue and just tried to do the best I could to get out of this mess.

After 5 months, I started to sleep two hours, but always waking up at 5am. I still can't passed this time, and only few instances, I was able to sleep until like 8am. This is rare for me... Then, I started to listen to my body. If I was in my couch and I was feeling tired and sleepy, I will just stay there and let the body just go to sleep. Eventually, 7 months later, I was able to at least sleep 5 hours. At 22 months journey, I sleep on average of 6 to 7 hours and I still wake up 5am. I just go to sleep around 10pm, so I can get enough sleep. Only three weeks ago, I started to fall asleep y hours straight without waking up between 10pm to 5am. However, in the last few days, I went back to cortisol issues and waking up couple of times during the night... However, the cortisol, anxiety, intrusive thoughts and the psychological issues are weaker. They don't bother me much anymore.

I can say that at 22 months, and still on my reinstatement dose now on 4.66mg, I am 80% recovered. I still a long way to go, but it's a slow process and stability it's my goal first. I'm holding as much as I can to allow my system to stabilize a lot better before continuing tapering.

Now, someone who does cold turkey and can't reinstate will have a terrible journey as well. Either way, we all had those terrible symptoms your wife is experiencing. We all had to find ways to a change our mentality to bit this symptoms. The reason for the symptoms is because the body is trying to heal and recover from the harm of these medications.

Putting more drugs to find release will not help at all. The best way, unfortunately, is to ride the wave. We all have learned to ride this wave and your support to your wife at this time is very important. What we go through, I will not even desire to my worst enemy. The symptoms are real and unfortunately, majority of doctors don't know or don't believe which they end up prescribing more medications that will not work.

This is what I did during my terrible sleepless nights...

1. Change my mind set and accept it. This will not kill me and eventually, my body will fall asleep.

2. For sleepless nights, I put classical music, listen to podcasts or something none violent.

3. Sit on my bed instead of fully down.

4. Read my Bible and pray.

5. Learn to trust the process and believe it.

6. Wife support me by listening and gave me courage to continue moving forward.

7. Set my weak mind to be stronger and not to allow this to bit me.

8. Meditation under the shower

9. A lot of walking outside.

10. Read books and got cognitive behavioral therapy to cope and accept symptoms. It helped me and still helps.

11. Feel, accept, and float.

Very helpful post, @Raymond , thank you very much!

Dear @HopeOfHealing , I will pray for you.

When I cannot sleep, I try to concentrate on picturing myself lying in the hands of God. This doesn’t necessarily send me to sleep, but I can feel some peace and joy that comes with this knowledge. God bless you!

Edited October 2Oct 2 by Nemina