22 minutes ago, HopeOfHealing said:

On addition to this.. You know why we gravitated towards drugs. Because in everyones eyes, not using medication, makes you look crazy. I have talked to sooooo many people, friends, relatives, doctors (maaaaaany doctors) and our church community. And everyone have this... "Well... I don't know. I think some medication should be used." So you end up looking crazy when you say you don't think it is a good idea.

I can guarantee you that everyone on here has faced this kind of judgement at one point or another. I've definitely had the strange looks and skeptical comments when I start talking about my own psych drug injury. No one understands this kind of injury until they've experienced it. But we're the ones with intimate knowledge of what we're going through. We know best what happened to us.

25 minutes ago, HopeOfHealing said:

But I guess... There is no other way but through. 🤷‍♂️

100%. It's the only way. Healing will happen 💜

2 hours ago, HopeOfHealing said:

In theory just could CT it as she has used it few days only.

Yes, probably best. Dr Mark Horowitz has a rough rule of thumb that ideally a taper should never be longer than the time on the drug. A few days use only, you should just stop it.

And again, I advise getting rid of the Garmin/Smartwatch. It does not help anyone sleep, it just spits out data that breeds anxiety if the pattern doesn't seem "good enough". It sells the fallacy there is such a thing as the ideal nights sleep. This can become a fixation and unattainable goal. The CBT Insomnia training I did was very clear that such devices make insomnia worse.

3 hours ago, HopeOfHealing said:

What I tend to equate it to is a rocking boat in the sea. And drugs as adding weight at random points making the boat rock more and more and more not being able to stabilise

. So... best action seems to be "freeez" and hope that the boat equalizes.

That's a good analogy.

You could try to stop making changes and hope that the boat equalises whilst there is still a drug in the picture (as you asked about the daridorexant), but it's unclear what the drug is doing and there is also no real guarantee that it will be helping with sleep in a few weeks if it is now.

4 hours ago, HopeOfHealing said:

@Luke I have read all the post you (and everyone else) have written. I have the utmost respect for you. And I don't doubt your experience. BUT... it is very very difficult to compare. So... Many times my wife is doubting that anyone else has had as a terrible experience as her. And she doesn't mean to be disrespectful to anyones suffering. Just it get soooo difficult at some points that it is just unbearable and it is hard to believe such suffering exists.

Ok, well I didn't create and then run an internet forum all at a financial loss to myself and @Chippy purely to try to stop what happened to me happening to anyone else because I haven't suffered much.

I'd also point out that during this wave Hope was getting more sleep than I was getting at double the number of months off of just one drug taken short term, and I have never been well enough to go for a run at 3.5 years off. Around the time of Hope's wave in terms of months off of drugs, I was having week-long episodes of struggling to walk and talk and had never had a window so I wasn't having "waves for weeks". I was extremely bad for years, constantly.

Sadly, I know full well what it means to suffer, and everything I say is in the context of trying to prevent similar suffering to others, including Hope. When I talk about giving it time, believe me I am not saying this lightly and being blasé about what that truly means. I've lived it, and still am.

I know that doing nothing other than allowing the body to recover by itself is a horrifying choice.

The difference is, I lived in a similar state to the one we're discussing now for years along with significant physical illness and disability, all from one drug for a few months, so I already knew that more of them were dangerous. In that context, I try hard to warn others against doing things that might put them where I was for years. Sadly, we frequently see that people think that they're suffering very much (and they're right), and that it cannot possibly get any worse (and this is something they're often very much wrong about).

I'm very sad that Hope is suffering so much. Believe me, I understand what it's like, intimately.

3 hours ago, Sminismoni said:

@HopeOfHealing Regarding Daridorexant, it isn't realistic to compare safety and tolerability of a drug in the average person and someone with a very sensitised nervous system.

We do have members here who have reacted adversely to it when already harmed by psychiatric drugs.

Finally, with regards to sleep tracking using a smart watch, they are very limited in terms of what they can actually measure. They can somewhat reliably detect when you're asleep (by seeing you be still and HR changes), but all of the measurements of sleep phases are extremely dubious and are not backed by solid science that unanimously agreed upon at all.

I would recommend getting to bed considerably earlier, and just trying to lie there and relax. This is still some level of rest even if it isn't sleep, and if it takes time to fall asleep, you still fall asleep earlier.

Gentlemen, Thank You! 💪

DORA

9 hours ago, Sminismoni said:

Yes, probably best. Dr Mark Horowitz has a rough rule of thumb that ideally a taper should never be longer than the time on the drug. A few days use only, you should just stop it.

9 hours ago, Luke said:

We do have members here who have reacted adversely to it when already harmed by psychiatric drugs.

Noted. Yesterday we split the dose in half. Today will try to off completely. It has only been 6 days on it now.

Suffering

9 hours ago, Luke said:

Ok, well I didn't create and then run an internet forum all at a financial loss to myself and @Chippy purely to try to stop what happened to me happening to anyone else because I haven't suffered much.

Yep. This is something I have also been saying to my wife. People don't do such a thing if they haven't been to hell and seen the devil themselves. That is why we keep coming back. We trust the experience people have here. Others don't understand. My wife's best friend suggested "Just lie down and watch some polar bears no National Geographic". At times each day my wife cannot stop to even sit down. Let alone to lie down on the coach. The video that @Kahran shared (https://www.youtube.com/watch?v=lDvyrIinjts&t=1821s) said it perfectly. I shared with her, maybe will raise some understanding.

Garmin

9 hours ago, Sminismoni said:

I advise getting rid of the Garmin/Smartwatch. It does not help anyone sleep, it just spits out data that breeds anxiety if the pattern doesn't seem "good enough". It sells the fallacy there is such a thing as the ideal nights sleep. This can become a fixation and unattainable goal.

9 hours ago, Luke said:

Finally, with regards to sleep tracking using a smart watch, they are very limited in terms of what they can actually measure. They can somewhat reliably detect when you're asleep (by seeing you be still and HR changes), but all of the measurements of sleep phases are extremely dubious and are not backed by solid science that unanimously agreed upon at all.

Agree. We have an agreement that she doesn't look at it. Only I do. To limit the performance anxiety to reach a certain score. I don't share the score data with her. I use it to have a bit more objective "second opinion" on how the night went. Even if it is inaccurate, I hope it is same inaccurate each day.

Update on yesterday/this morning:

My wife's mornings are absolutely terrifying:

• Wakes during the night or early morning with overwhelming fear of simply existing.

• Heart pounding, everything feels dark, threatening and hopeless.

• The physical terror comes first, completely overwhelming rational thinking.

• Strange mental sensations, as if her thoughts and emotions have been shaken together. She feels disconnected from herself, almost as if she's losing her mind.

• Barely functioning, with almost no relief throughout the day.

Strangely... It all seems to lift at the evenings. For example, yesterday evening (at around 22:00) she had a brief moment of peace. Similar thing happened in previous days. Like quite suddenly the sea is calm. We don't understand why evenings sometimes bring relief while mornings are so unbearable.

1. One culprit we suspect is DORA as every night we use it and then it might be driving worsening of symptoms during the night and first part of the day. + She any way wakes up super tired so doesn't seem DORA his helping there either.
2. Likewise, I guess it could be any other systems imbalance.. Histamine, noradrenaline, dopamine, serotonin etc. all fluctuate during the night, especially when the receptors have been freshly exposed to Seroquel that messes with most of them.

But I guess the answer is still the same - what is needed is time.

Additional background context:
All of this experience is partly amplified by extensive fears that come from the past.

• Her mother suffered from depression/anxiety, was repeatedly hospitalised, gradually lost her ability to function and eventually took her own life. My wife is terrified of following the same path.

• Five years ago, after COVID and a skin cancer diagnosis, my wife developed anxiety and insomnia for the first time.

• Doctors prescribed benzodiazepines, leading to tolerance, dependence and horrific cold turkey withdrawal. Later, an antidepressant was also stopped very rapidly.

• These experiences left her deeply afraid of medication and hospitalisation.

Why this wave is especially devastating - this summer she was finally recovering: sleeping well, exercising, studying and enjoying life again. Now she is barely functioning. Losing that progress after so much suffering has been emotionally crushing.

She understands that trauma may be amplifying her fear and is seeking psychological and spiritual support, but right now talking alone provides little relief, sometimes actually does the opposite and amplifies the anxiety.

Once again, thank you all for so many replies, ideas, feedback etc. It is much appreciated.

1 hour ago, HopeOfHealing said:

Even if it is inaccurate, I hope it is same inaccurate each day.

This is exactly what I was warning against. Sleep in humans, is never and can never be the same every day. You are chasing a unicorn. I understand that only you look at it, not Hope, however, anxiety can spread from one person to another (in the same way we feel tense when others around us are tense). You are reassurance seeking yourself, treating your own anxiety with that thing.

It seems to me you are still trying to find half measures here.

"We only used this drug for a bit"

"I am the only one to look at the Garmin"

This is a serious situation and if a surgeon told you that a full leg amputation was required to fix this, I suspect you would agree tomorrow. Yet here we are, telling you that very radical measures are the only thing that will help here, but you don't seem able to hear that.

Edited Thursday at 07:50 AM4 days by Sminismoni

@HopeOfHealing I would like to add a little to what @Sminismoni has said about drugs and how sensitive Hope is right now.

I think there is a HUGE misunderstanding about 'medications' with the general public, and if I am honest I think it is a view held (perhaps subconsciously) by many medical professionals who should know better.

These are drugs. Drugs are poisons. These poisons become categorised as 'medications' only at 'therapeutic' doses. They still remain poisons.

These drugs have effects. Not side effects. Just effects.

They only become medications at therapuetic levels in 'normal' people, where there will be desired 'effect' that a clinician should be trying to take advantage of but they must balance the risks of harm from the other effects which the drug will no doubt have. These are often referred to as sides effects, but I think they are all too commonly considered something that won't happen, some small print on a label.

We (general society) all seem to think these drugs are magic woo woo pills that miraculously heal us of all our worries and occasionally cause side effects.

As I said above, this is not the case.

When a medical professional is prescribing a drug they should be weighing up the risks of harm against benefits. That is a patient by patient assessement. As @Sminismoni has said, the risk of harms is astronomically higher in a person with a sensitive nervous system and that is certainly not being taken into account here and if I am honest is rarely.

4 hours ago, HopeOfHealing said:

... It all seems to lift at the evenings.

This is a good sign and relief. I am still feeling bad in the morning hours and in the afternoon, everything gets better. The cortisol is worst in the morning hours and by the afternoon, it start lowering. I'm 22 months and my morning ls between 5am to 9am or 10am, it's the bad morning hours.

5 hours ago, HopeOfHealing said:

Strangely... It all seems to lift at the evenings. For example, yesterday evening (at around 22:00) she had a brief moment of peace. Similar thing happened in previous days. Like quite suddenly the sea is calm. We don't understand why evenings sometimes bring relief while mornings are so unbearable.

This is VERY common with drug injury/withdrawal. If you look around this forum you'll see many folks who report having windows in the evenings. No one knows why, but it is yet another sign (not that you need any more) that Hope is dealing with a drug-induced condition.

5 hours ago, HopeOfHealing said:

All of this experience is partly amplified by extensive fears that come from the past.

• Her mother suffered from depression/anxiety, was repeatedly hospitalised, gradually lost her ability to function and eventually took her own life. My wife is terrified of following the same path.

• Five years ago, after COVID and a skin cancer diagnosis, my wife developed anxiety and insomnia for the first time.

• Doctors prescribed benzodiazepines, leading to tolerance, dependence and horrific cold turkey withdrawal. Later, an antidepressant was also stopped very rapidly.

• These experiences left her deeply afraid of medication and hospitalisation.

If you have the capacity to do this, I would recommend you get a copy of the book Anatomy of an Epidemic by Robert Whitaker. His basic theory, which he supports very convincingly (in my view) with existing data, is that the long-term use of psych drugs actually leads to much worse outcomes for patients. In particular, the rise of "treatment-resistant" depression can be linked to the growing use of "antidepressants." Reading this book helped me to reframe my view of what has happened to some of my own family members who have struggled for a long time with chronic and debilitating mental illness while being cycled through different drugs for years.

Wondering whether some homeopathy is worth considering during recovery, or whether it’s better to stay away from ANY additional treatments and simply give the nervous system time to stabilise.

1 hour ago, HopeOfHealing said:

Wondering whether some homeopathy is worth considering during recovery, or whether it’s better to stay away from ANY additional treatments and simply give the nervous system time to stabilise.

In my case, I stayed away from everything and it's probably the reason I'm healing better.

We only recommend few supplements, but I just avoid everything. I do not want to put more fire into it.

Let see what others recommend....

I hope @HopeOfHealing gets better, which she will.

Just now, Raymond said:

In my case, I stayed away from everything and it's probably the reason I'm healing better.

We only recommend few supplements, but I just avoid everything. I do not want to put more fire into it.

Let see what others recommend....

I hope @HopeOfHealing gets better, which she will.

I should say that I get any vitamin or supplements from fruits I eat.

She constantly feels terrible, but then there are episodes of an extremely intense urge to die. Not because she truly wants to die, but because the emotional suffering becomes so unbearable that she feels she cannot continue existing.

She describes:

• A terrifying, painful emptiness. No hope, no positive thoughts, emotions, desires or anything good.

• An overwhelming feeling that everything is over, she is permanently ill or has lost her mind.

• The feelings are so real and convincing that she cannot believe they are symptoms rather than her true self.

• An almost desperate urgency that something must happen immediately to end this suffering. It feels like the only choices are death or hospitalisation.

I see that this is common. I was viewing. more videos from the channel @Kahran shared such as https://youtu.be/gGi-m3X12Qk?t=2049&is=jjAlg6-vDqUAfLpn talking exactly about that. I truly hope it will settle down.

1 hour ago, HopeOfHealing said:

She describes:

• A terrifying, painful emptiness. No hope, no positive thoughts, emotions, desires or anything good.

• An overwhelming feeling that everything is over, she is permanently ill or has lost her mind.

• The feelings are so real and convincing that she cannot believe they are symptoms rather than her true self.

• An almost desperate urgency that something must happen immediately to end this suffering. It feels like the only choices are death or hospitalisation.

I felt exactly all of this when I was co-erced into taking Seroquel and Lamictal. It's pretty terrible and I'm not sure what to say other than wait it out. The only thing that keeps me going is the fact that in the past, I was able to prove to myself that things did get better while off time. Though, its incredibly disheartening to have essentially set that all back.

@HopeOfHealing Homeopathy is just water. It won't help. One member here even said they reacted to it.

Update on last night:
My wife didn't take Quviviq last night but still managed a few hours of sleep, which was encouraging.

However, she woke with nausea, followed by overwhelming terror, deep depression and despair. Beautiful memories of our family keep flooding her mind, alongside panic that she may never get to watch our children grow up. We're struggling to understand how much is acute withdrawal the medication, the destabilisation it caused and how much is now driven by the fear itself. Now in the morning she describes the current feelings as unbearable anxiety and that is all there is, no other emotion. Can anxiety this extreme eventually settle with time? Doctors say no. They say the "system needs support" as in medication and potentially hospitalization.

My wife is also frightened this could be a relapse rather than withdrawal. Meaning that her system is damaged and cannot settle itself without an AD. She had major crashes around 8 and 20 months after stopping antidepressants. Could her nervous system somehow used to AD's and is no-longer able to remain stable without them? This goes against what is said all throughout the forum I guess. More over, because the brain constantly adjusts itself, so I guess this is highly unlikely. Just at this point the brain comes up with various terrifying explanations.

Hospitalisation terrifies her because of previous severe reactions to benzodiazepines and antipsychotics and the lack of doctors caring to take that into account. She feels there is a high likelihood that things would get worse at the hospital and that is what everyone here has also confirmed in the past posts.

Honestly it is tough... Even on me as a caregiver. She now says she wants to die because the suffering is unbearable. She's holding on for our children, but as her husband, I'm genuinely frightened. I am desperately looking for a way to help her through this crisis safely. I am trying to keep her fighting spirit up. To pull her up, push her through the day, but I feel like she herself has lost faith that she can recover. Even when I show her stories of other people, interviews with survivors, she feels that her case is unique and incurable. I pray to God to restore it so we could win this battle.

@HopeOfHealing s husband.

Hope isnt seeing a an underlying condition coming back. Look at it logically. She had a wave. Out of the blue. Everytime the 'magic' pills are added back in she gets worse. How does this look like anything other than drug harm!? Thats far from logical. She has been in this community to know very well what this is. Staying away from the hospital is exactly what you need to do. Why you would even factor in what any doctor has to say on this subject now is beyond me. The idea yet another drug would do anything other than harm is madness. The first sign of this is doing the same this over and over and expecting a different result.

Hope can 100% pull through this. She is going to need your support. Brutally. The way she survives this, is taking it one grueling day at a time until things start to get better. You don't have to worry about a week or a month. Just one day. Thats it. Get her through one day. Tomorrow is not of concern. That is how you cope in WD. Its how we all cope. She doesn't need to believe in her recovery, you do that for her, she just needs get through the day. With your help she has 100% got this.

14 minutes ago, Chippy said:

Why you would even factor in what any doctor has to say on this subject now is beyond me. The idea yet another drug would do anything other than harm is madness. The first sign of this is doing the same this over and over and expecting a different result.

Thanks @Chippy! I do understand. But I would say it is rather desperation than madness. In her state she is afraid that she might not make it through. That she might go into a panic state and do something to her self. I am by her side 24/7 to prevent that. To coach her through. I am the one saying we need to fight, minute by minute, and we will keep fighting.

And I agree that staying away from hospital is the right move. But we have one frightening question: if we reach a breaking point, is hospitalisation really as hopeless as we fear? I listened to many interviews on Angie Peacock and people have been to the hospital and returned from it. Then again... If we have a plan B, we might not commit enough to plan A, which is preserver.

Today my wife says the sensations are so incredibly intense, strange and unnatural that she strongly suspects quetiapine withdrawal. The thought we have is that Quviviq (daridorexant) might have masked the acute WD she has been experienced this week (last time she used quetiapine is last Thursday so some 7 days ago). Terrible brain fog, confusion, overwhelming anxiety, fear, despair, everything at once. The suffering is unbearable, and at times she feels desperate to end everything.

On top of that even if all the symptoms are caused by WD, the problem is that as a person she has general health anxiety as it is and on top of that the thought that "I might not make it through", "What if I... off myself?" is creating a lot more fear on top. It is an evil mix! And that creates sooooo much despair.

Edited Friday at 08:28 AM3 days by HopeOfHealing

9 minutes ago, HopeOfHealing said:

Thanks @Chippy! I do understand. But I would say it is rather desperation than madness. In her state she is afraid that she might not make it through. That she might go into a panic state and do something to her self. I am by her side 24/7 to prevent that. To coach her through. I am the one saying we need to fight, minute by minute, and we will keep fighting.

And I agree that staying away from hospital is the right move. But we have one frightening question: if we reach a breaking point, is hospitalisation really as hopeless as we fear? I listened to many interviews on Angie Peacock and people have been to the hospital and returned from it. Then again... If we have a plan B, we might not commit enough to plan A, which is preserver.

Today my wife says the sensations are so incredibly intense, strange and unnatural that she strongly suspects quetiapine withdrawal. The thought we have is that Quviviq (daridorexant) might have masked the acute WD she has been experienced this week (last time she used quetiapine is last Thursday so some 7 days ago). Terrible brain fog, confusion, overwhelming anxiety, fear, despair, everything at once. The suffering is unbearable, and at times she feels desperate to end everything.

Desperation is a much better description. It’s still the same result. Poor decisions leading to a worsening out come. Sadly.

I would just rule out the hospital. Thinking there is a plan b that will help but in reality more likely worsen isn’t a plan b.

You are wonderful caring man. Thanks for being there for her through this. She will make it if she just churns out the days until things ease.

@Luke my wife remembers you saying that at one point you couldn’t talk or even walk. Back then she wondered how that was even possible. Now, literally, that’s her.

Even going for a walk feels incredibly difficult, yet she can’t stop pacing. Sometimes she struggles to put a sentence together or even understand what she’s saying because she can barely think clearly.

All she wants is for this suffering to end somehow. She keeps telling herself, if Luke and others made it through, I can too.

@HopeOfHealing I was having episodes where I couldn't control my legs properly and could only kind of shuffle and trip over my own feet, combined with being extremely physically unwell and fatigued, I could barely walk at these times.

At the same time as that, I also slurred my words and had significant cognitive issues.

This is the outcome that we were trying to prevent when repeatedly warning against new drugs. That said, recovery is still possible.

3 hours ago, HopeOfHealing said:

And I agree that staying away from hospital is the right move. But we have one frightening question: if we reach a breaking point, is hospitalisation really as hopeless as we fear? I listened to many interviews on Angie Peacock and people have been to the hospital and returned from it. Then again... If we have a plan B, we might not commit enough to plan A, which is preserver.

Please rule out going to the hospital. I have yet to see anyone go into a psych ward and come out better, even if they aren't going in with an already extremely sensitive nervous system.

All the hospital can offer is drugs. Drugs will make things worse, again. There is only one plan, and that is passing the time and helping Hope survive minute by minute until things slowly start to improve.

5 hours ago, HopeOfHealing said:

My wife didn't take Quviviq last night but still managed a few hours of sleep, which was encouraging

@HopeOfHealing .....your wife needs to stop adding medication. As mentioned before, let the CNS heal on its own. Feeling terrifying, panicking, and all those psychological symptoms are part of withdrawal. The brain and body are working out to get things fixed as it should be, but it needs to come to a stop in trying to add more medication out of desperation. Going to a hospital won't help as these doctors only have in their mind profit (sad to say) and it will add to her issues and end up with medications she doesn't need.

Focus on small positive changes like being able to sleep even 15 minutes. Focus on changes when you said that in the evenings she feels little better. All of that is proof of recovery. Unfortunately, the system takes long to heal due to the damage being done by medication. She feels like she won't make it, but you will be surprised how strong we become. Don't focus in the future and just focus day by day. It's hard and we have been there. All of us helping here have been there. We still not out of the road, but we can tell you that we feel better. Time, acceptance, and patience and not adding drugs anymore the only way out.

Terrifying and panic symptoms are real, but it's not her. It's just a fragile system that is trying to heal. My first 7 months were terrible. I got so terrifying sensation that even emails from my boss will create panic sensation. Even if someone will just say hi, my mind was thinking the worst. I am 22 months journey and I still get this job fear sensation but not strong as it was and not every day. Now, it's more like anxiety. Eventually, as time passes by, it will get better.

She will get better. Keep watching podcast from Angie peacock, dr. Horbitz, Chris Paige, and other podcast related to this journey and recovery.

Thank you @SarahMc and @Raymond

I agree on the hospital and the need to focus on small positive changes.

Today is really really difficult. Her head is terribly foggy, and she’s overwhelmed by unexplained fear. She feels so unlike herself that she’s genuinely terrified she might be losing her mind or developing psychosis. I think this is not true. It is one of the thoughts that are there that scare her - thinking there is no way out.

In desperation, she frantically messages people from our church asking for help. Afterwards, she doesn’t even understand why she did it, except that she’s desperately hoping someone can save her. She feels she’s losing control of herself. She is trying to find answers, validation when the actual answer is give it time. But that is sooo scary for her. As she believes that over time she will irreversibly lose her mind. Which again is something she keeps repeating to herself and it is making her more scared.

She is stuck in a loop and I am trying to pull her out of it.

@Raymond anything that helped you to go past the panic feeling? Or just over time it went away by itself?

1 hour ago, HopeOfHealing said:

developing psychosis. I

This is the mind just playing tricks. Reasons to avoid medication and hospital. At a hospital, they will misdiagnosed and make things worst and she will end up in worst situation.

Keep remembering thats not her. It's just mind playing tricks. I remember when I was at that stage. I thought I was going crazy.... terrible 😢!!!

But keep ignoring intrusive thoughts....the psychological symptoms are just terrible and hard to cope. One day at a time...