@HopeOfHealing's husband, I have been in the same Hell for 7 months now: inner akathisia, urge to jump out from my skin, unbearable restlessness, insomnia, sense of terror... As Hope, I am desparaid, living torture, every single second is a Hell. But do we have a choice? As you, my husband doesn't know what to do, he suffers with me. Hope in Time, there is not other thing to do...

Edited October 11Oct 11 by skamen

@HopeOfHealing 's husband and Hope , I'm truly sorry that Hope has to endure this viscous cycle we all have to endure during this healing process, but as time passes it will get better. It's a cruel thing we all must endure and at times infuriated by how little Doctors understand the impact on what these medication can do to our systems as we tapper off.

I once remembered back when I first started my tapping and when I finally got to zero and jumped off, my Doc asked if I wanted something to manage the pain and sleeplessness, ect., I told her " Doctor Sceinder, I don't want to have another medication I have to overcome ". I'm glad now I listened to my inner voice because it would of made things worse.

As grueling as it was, and did I question my decision , Yes, I did, but looking back all my pain I went through was worth it. Because I'm so much further into reaching the final chapter in my healing process and it will be the best story ever written. The story of never ending and enduring strength and compassion.

If I could sit with Hope I would tell her and hold her had and guid her by saying your story is yet to be told and this pain and suffering we go through isn't forever for we are strong and resilient and our bodies are trying extreamly hard to rebuild what has been damaged by these drugs.

I was as so many others here before me thought that this was my life of neverending pain and suffering but as I near my 2 year mark form zero I'm here to say it does get better

6 hours ago, HopeOfHealing said:

And now of course the question is if this is now withdrawal, prolonged insomnia, original wave or something else.

It's all pretty "classic" in terms of what we repeatedly see happening to people who are suffering and in withdrawal who attempt to find withdrawal symptom relief by cycling through further new psychiatric drugs. For us it's not really a question at all, we've seen exactly this happen with almost exactly the same symptoms and consequences as a result quite a lot.

People have been telling you this over and over again, because we are all hoping that at some point the cycle of adding in new drugs and causing further harm will stop, for her sake.

In your other posts you've pondered the fact that she was not well before adding in these various new drugs, but I think it's worth me pointing out that pretty much exactly a month ago:

• She was able to post for herself

• She was experiencing occasional nights of good sleep

• She was having some windows of relief where she was able to go for runs, enjoy things etc

• She did not have anything like the severity of symptoms she is experiencing now

This is quite clearly a significantly worsened state that she is in since trying various new drugs.

We want to help, but it's very difficult to help with the situation and for you to figure out what to do to change this situation if we're all dancing around discussing what the situation is.

Well said @Luke and absolutely agree 10000%

@HopeOfHealing s husband sending you both some love, please keep us upto date with how she is, we are all very worried about her. xxxx

Hi everyone.

I don’t really have the strength to write or read myself anymore, so my husband is taking care of almost everything at the moment.

I’m barely functioning. I try to walk when I can, but even eating, drinking and showering are difficult. I live minute by minute and have many thoughts about death, not because I don’t want to live, but because the suffering feels unbearable.

I’m honestly shocked by how far this late wave has progressed. I didn’t turn to medication because I was doing well. I became desperate after completely sleepless nights, day and night akathisia/psychomotor agitation, and the feeling that my brain simply wouldn’t switch off. I felt medication probably wouldn’t solve it, and unfortunately things have become even worse.

I’ve now stopped quetiapine, but withdrawal may be making things worse. For the last few nights I’ve taken daridorexant. I sleep a couple of hours at the beginning of the night and then wake up. The second half of the night is often unbearable, with thoughts that I don’t want to live anymore. I would like to try a night without it too, but I’m terrified of what will happen if I get even less sleep.

I speak to my psychiatrist every week. She says hospital is an option where medication could be introduced carefully. Given my own history and what I’ve seen happen to others, I’m very conflicted about that.

What shocks me most is that this doesn’t feel like ordinary insomnia, anxiety or depression. There is an akathisia-like restlessness not only physically but inside my head, as if the agitation is happening there and constantly pulling at me. I sometimes eat a few bites while standing because sitting still is so difficult. Even spending half an hour watching TV with my children is hard, but I fight to do it for them.

Another frightening part is that it feels as if my mind has somehow shut down or become blocked. I feel like I’m somewhere else, and yet part of my awareness understands what is happening but cannot properly reconnect.

It’s similar with the restlessness. I understand that I should be able to stop, sit down and rest, but my body keeps demanding movement and I cannot seem to control it. I feel trapped inside this state, aware of what is happening but unable to break out of it. That feeling of being trapped in my own mind and body creates enormous anxiety and is also a major reason why thoughts of wanting to die appear.

My head is constantly foggy and drugged, my vision feels unclear, and there is a frightening altered/derealized feeling, almost as if my consciousness is switching off or I’m in another dimension. My MRI was normal, but the symptoms feel so strange that I keep wondering whether something else could be wrong with my nervous system.

I’m now deeply depressed, but sometimes I wonder whether the depression is partly a consequence of being trapped in this state. At times there is terrifying emptiness, no desire, feeling or thought, just dysphoria and wanting to disappear. At other times the physical tension is more obvious, with my body and face tightening and even my breathing feeling restricted.

This state is so strange that I struggle to even define the symptoms or separate what is emotional from what is physical.

Sometimes I’m overwhelmed by a terrifying emptiness. There are no feelings, desires or thoughts, just a sense that everything is over, intense dysphoria and a desire to disappear.

At other times the physical side becomes stronger. My whole body and face tighten up, and it even feels as if my lungs are being squeezed.

One thing that feels important: at the beginning of this wave I still had windows. Some were small and some bigger, but they gave me hope. Those windows gradually became smaller, and now I haven’t had a real one for weeks. This may overlap with the period when I started trying medications.

I’ve searched for many recovery stories, but I genuinely struggle to find anything that feels this extreme or similar.

Do you think these weeks of medication trials put me back at the beginning, or can I still come out of this wave and continue recovering? My husband thinks it is possible, but I am not sure...

And what are your thoughts or experiences with homeopathy in a situation like this?

I appreciate every message and every bit of encouragement. If anyone has practical experience with a state like this, I would be very grateful to hear it. I desperately want to find some way to keep living and get through this.

If you believe in God, please pray for me. 🙏

@HopeOfHealing you asked if weeks of medication trials could of set you back to the beginning, in my opinion and from what I've read recently I thought you already answered this question, and yes I think without a doubt it has sent your system in a bit of a shock and just trying to figure things out. To be blunt your system is mad as heck and didn't like the change and plain and simple it's letting you know. Imo, I wouldn't be adding any more medication and just let your body & CNS catch up to stabilize. In my earlier days of tapering I myself wanted a quick fix or some sort of relief from suffering we all endure during this process, but I just told myself I didn't want another medication I have to overcome. The magic potion we all look for is simple,

Its call TIME, and a little acceptance.

You are always in my thoughts and definitely my prayers. I do have a strong belief in God, and truly believe I wouldn't of gotten this far without him.

And honestly I speak to God every night, he does listen.

Hugs my friend and please just give things time our bodies know exactly what to do , and your system has had a lot of changes and just need the TIME, to regulate itself.

With all my love Hope, stay strong and keep the faith 🤗🙏

2 hours ago, HopeOfHealing said:

I live minute by minute and have many thoughts about death, not because I don’t want to live, but because the suffering feels unbearable.

It's a terrible feeling I can relate to ever since my quetiapine setback as well.

2 hours ago, HopeOfHealing said:

She says hospital is an option where medication could be introduced carefully. Given my own history and what I’ve seen happen to others, I’m very conflicted about that.

You should be conflicted. You'll be in a place with a bunch of other people messed up by the system designed to help them. You'll be watched over by underpaid nurses who are simply following orders and don't really care about you or your symptoms. The psych there will probably treat you like some dog and shut you up with some random anti-psychotic or pill.

Stay home, psych wards are depressing. In my stay, I saw so many people leave worse than how they arrived.

2 hours ago, HopeOfHealing said:

One thing that feels important: at the beginning of this wave I still had windows. Some were small and some bigger, but they gave me hope. Those windows gradually became smaller, and now I haven’t had a real one for weeks. This may overlap with the period when I started trying medications.

It is highly discouraging, but the windows will come back again. There's 5 or 15 minute periods where I myself catch myself feeling decent and goofy. Give it some time.

2 hours ago, HopeOfHealing said:

Do you think these weeks of medication trials put me back at the beginning, or can I still come out of this wave and continue recovering? My husband thinks it is possible, but I am not sure...

Based on my experience, it's still possible to get out. I've objectively gotten better since this trial. Now, that might be a very small percent "better", but it's still better. We just have to survive until then.

If you can, try to get outside and walk. That's what I've been finding myself doing to just pass the time. It's a very weird feeling to walk 10k to 20k steps a day not because you want to, but you HAVE to. Might as well do it outside in a beautiful setting rather than pace back in forth in my dirty room.

4 hours ago, HopeOfHealing said:

Hi everyone.

I don’t really have the strength to write or read myself anymore, so my husband is taking care of almost everything at the moment.

I’m barely functioning. I try to walk when I can, but even eating, drinking and showering are difficult. I live minute by minute and have many thoughts about death, not because I don’t want to live, but because the suffering feels unbearable.

I’m honestly shocked by how far this late wave has progressed. I didn’t turn to medication because I was doing well. I became desperate after completely sleepless nights, day and night akathisia/psychomotor agitation, and the feeling that my brain simply wouldn’t switch off. I felt medication probably wouldn’t solve it, and unfortunately things have become even worse.

I’ve now stopped quetiapine, but withdrawal may be making things worse. For the last few nights I’ve taken daridorexant. I sleep a couple of hours at the beginning of the night and then wake up. The second half of the night is often unbearable, with thoughts that I don’t want to live anymore. I would like to try a night without it too, but I’m terrified of what will happen if I get even less sleep.

I speak to my psychiatrist every week. She says hospital is an option where medication could be introduced carefully. Given my own history and what I’ve seen happen to others, I’m very conflicted about that.

What shocks me most is that this doesn’t feel like ordinary insomnia, anxiety or depression. There is an akathisia-like restlessness not only physically but inside my head, as if the agitation is happening there and constantly pulling at me. I sometimes eat a few bites while standing because sitting still is so difficult. Even spending half an hour watching TV with my children is hard, but I fight to do it for them.

Another frightening part is that it feels as if my mind has somehow shut down or become blocked. I feel like I’m somewhere else, and yet part of my awareness understands what is happening but cannot properly reconnect.

It’s similar with the restlessness. I understand that I should be able to stop, sit down and rest, but my body keeps demanding movement and I cannot seem to control it. I feel trapped inside this state, aware of what is happening but unable to break out of it. That feeling of being trapped in my own mind and body creates enormous anxiety and is also a major reason why thoughts of wanting to die appear.

My head is constantly foggy and drugged, my vision feels unclear, and there is a frightening altered/derealized feeling, almost as if my consciousness is switching off or I’m in another dimension. My MRI was normal, but the symptoms feel so strange that I keep wondering whether something else could be wrong with my nervous system.

I’m now deeply depressed, but sometimes I wonder whether the depression is partly a consequence of being trapped in this state. At times there is terrifying emptiness, no desire, feeling or thought, just dysphoria and wanting to disappear. At other times the physical tension is more obvious, with my body and face tightening and even my breathing feeling restricted.

This state is so strange that I struggle to even define the symptoms or separate what is emotional from what is physical.

Sometimes I’m overwhelmed by a terrifying emptiness. There are no feelings, desires or thoughts, just a sense that everything is over, intense dysphoria and a desire to disappear.

At other times the physical side becomes stronger. My whole body and face tighten up, and it even feels as if my lungs are being squeezed.

One thing that feels important: at the beginning of this wave I still had windows. Some were small and some bigger, but they gave me hope. Those windows gradually became smaller, and now I haven’t had a real one for weeks. This may overlap with the period when I started trying medications.

I’ve searched for many recovery stories, but I genuinely struggle to find anything that feels this extreme or similar.

Do you think these weeks of medication trials put me back at the beginning, or can I still come out of this wave and continue recovering? My husband thinks it is possible, but I am not sure...

And what are your thoughts or experiences with homeopathy in a situation like this?

I appreciate every message and every bit of encouragement. If anyone has practical experience with a state like this, I would be very grateful to hear it. I desperately want to find some way to keep living and get through this.

If you believe in God, please pray for me. 🙏

@HopeOfHealing ....sorry about your situation. Like we said before, adding drugs will only cause problems. Psychic hospitals will do no good for you. They might even give you a bunch of medications and diagnose you with things you don't even have and it just caused by the medication.

All those symptoms we all had them and still have them in a lot less intensity, which it is a sign of healing.

I also had issues taking showers. We all have been there. It is crazy how these waves and withdrawals make us don't do anything. We lost interest of everything.

You mentioned something very important and it is having glimpse of small Windows. My first window only lady me like 15 minutes. Then, I started to feel depressed, anxiety, moving around constantly, couldn't sleep much etc ..

Currently, I'm 80% better and still tapering slowly. What I did to overcome everything was to set my mind to get out of it. I asked myself that if people in worst situations were able to get out of it, I can too. Also, as bad as it was not to sleep for days, I stopped adding medications or supplements to my body. It was bad enough for me to deal with this medication and adding more to my body was not going to help me. I stopped believing my doctor and started to believe my body with the support of this group. It's been 22 months now, and I can tell you I feel better and just recently my sleep gotten better.

I'm not out of it yet, but I'm slowly making progress because I believe in myself, my wife and children. They gave me the support I needed and the encouragement to continue with this journey. When my mind was telling me that I should go back to medication, I ignored it and found strength in God and kept going.

Focus on your small previous windows. They will become longer, but time and patience is the only way out. I know when we suffer, our minutes feels like days. But keep in mind that when you feel bad is when the body is healing.

And even writing today is part of your healing. You couldn't write anything in the part few days, and now, you came back. This is a positive sign that you are getting better even with the struggles...

Hey forum! Update on my wife's situation:

My wife slept better last night, but woke again with overwhelming fear. She wakes during the night frightened, almost trembling, and starts the day with intense anxiety and tight breathing. Nothing feels good or comforting anymore. Food, going outside, seeing people, normal activities, nothing brings relief. She is barely functioning and has recurring thoughts about death, not because she wants to die, but because the suffering feels unbearable.

We are very confused. How do we know if this will pass or if it needs treatment? From one side I get that this could this still be a wave combined with recent quetiapine withdrawal that needs time to settle. But at the back of our heads there is a question of if this is a depression that needs urgent treatment. How does someone know? If I ask a doctor, they say you need immediate actions now! If I read the stories on SA and here, then the answer is wait for it to settle.

My wife says she feels as if the depression is progressing and she is sliding deeper and deeper in it and that something needs to change. That this is something she hasn't experienced before in these years. I am not 100% sure, as I have seen her in some very dark places, however, I think this is because of the start of this wave in August was so... unexpected. And it didn't resolve so we switched to medication. That broke the believe system that waves come and go on their own. She says - "See! That time it didn't go away on it's own!" That broken belief is a heavy rock.

Hello @HopeOfHealing , I’m so sorry for all this terrible suffering. You and your husband sound very alarmed and in urgent search for help. This is very understandable. But this can be a dangerous route. Sometimes the best you can do is calm down and not make hasty decisions.

To answer your questions I can tell you about my experiences:

38 minutes ago, HopeOfHealing said:

She wakes during the night frightened, almost trembling, and starts the day with intense anxiety and tight breathing.

I have been waking during the night frightened for about two years now, ever since made a large cut from taking my antidepressant. in the first 18 months, it was constant, I would say, now I have more and more nights where this doesn’t happen and these are great ones. This night for example, I woke up actually trembling, you can feel the trembling when you lay your hand above my belly button. It is like a motor is running in my belly. An awful feeling. And of course, alarm and fear. I also start the date with anxiety, as you described it for yourself. Usually it gets better once I get up and going.

I am absolutely convinced that seeking medical treatment for this would be the very wrong way for me. Waking up with fear and anxiety is a very typical and very common symptom in the withdrawal process. In my case, there’s even the additional caution, that I had these problems even before I started the SSRI and one could say now it is coming back. But I have to say, it does not feel like coming back. It feels like withdrawal, because it comes along with so many other symptoms that I did not have before and because it is so typical for the withdrawal process. So I would encourage you not to try more and more medicines. So far this has not helped, but it has made things worse for you. There are many stories out there in the Internet and also on the closed forum ”surviving antidepressants” and that you can check out. None of the people there have found the magic pill that brings them out of withdrawal. But all of them experienced healing by giving their nervous system the chance to recover by itself.

51 minutes ago, HopeOfHealing said:

I think this is because of the start of this wave in August was so... unexpected. And it didn't resolve so we switched to medication. That broke the believe system that waves come and go on their own. She says - "See! That time it didn't go away on its own!" That broken belief is a heavy rock.

I do not think that you have waited long enough during this wave. You would have made the experience that also this wave would have gone on its own. Instead, you have made the experience that the additional medication you took made things worse.

I wish you the patience and trust to make wise decisions!

30 minutes ago, HopeOfHealing said:

If I ask a doctor, they say you need immediate actions now! If I read the stories on SA and here, then the answer is wait for it to settle.

Sure, and the doctors said that the drugs that put her in this situation couldn't cause these kinds of harms.

The alternative to "wait for it to settle" is to throw even more drugs at her, but that's been tried and the whirlwind of new drugs has done anything but make it settle, so I just can't see why you want to throw some more into the mix.

Many of the questions you're asking are coming from a place of doubting whether we know what we're talking about or not. It's for you to choose who you listen to, but I would urge you to consider that what is happening now, is exactly what we warned would happen if further drugs were introduced.

To summarise those warnings, it was that it would very likely make things much worse, and be even more difficult to know what to do next. This is the exact situation you're now in.

Now you're in this situation, that we warned would be the outcome, we're now going in circles debating whether that really is the situation.

43 minutes ago, HopeOfHealing said:

That broke the believe system that waves come and go on their own. She says - "See! That time it didn't go away on it's own!" That broken belief is a heavy rock.

She's not in that wave anymore, she's suffering the acute, much more severe symptoms from reacting adversely to the various new drugs that have been introduced, including taking them away again and changing doses around.

Every, single person who has responded to both you and her on this thread, without any exception that I can see, is a person who has also been harmed by these drugs. Many of us then have years of experience talking to others who have also been harmed by these drugs and seeing what happened to them. There are members of this forum, posting in this thread, who have even been through the exact experience of worsening themselves by adding in new drugs to try to treat symptoms of a wave.

The "immediate actions" a doctor will take will be to throw more and more drugs at the problem, using nothing other than trial and error to see if anything sticks. You've tried that, repeatedly, and nothing is sticking and everything is causing even more harm.

On 10/12/2026 at 11:58 AM, HopeOfHealing said:

Do you think these weeks of medication trials put me back at the beginning, or can I still come out of this wave and continue recovering? My husband thinks it is possible, but I am not sure...

As above, you're not in that wave anymore. You're now reacting very badly to the introduction of various new drugs and changing them all around.

My opinion, and it is only my opinion, is that based on what I've seen from others who were drug-free for a somewhat long time and then introduced new drugs for brief periods that they reacted very adversely to, is that IF you stop taking new drugs and remain drug-free, that it's unlikely that you've been put "back at the beginning", but that this will be a setback. That said, it's still just a setback on the path to eventually doing better in time.

@HopeOfHealing s husband. Sorry to hear of hopes suffering. As someone from the outside, it is VERY VERY clear that seeking help with what was a nasty wave has worsened Hope. Surely you can see this?! At some point one of you needs to say, enough, stop. Trust the body to heal. There is no underlying condition that needs treatment. Hope is experiencing 'WD' symptoms that are worsening through kindling. It really is that simple. You will find 1000s of doctors who will see this as an illness that needs treatment. They will give you more of these poisons and she will deteriate. No more drugs, lots of time. Both of you need to work on your acceptance. You love her, because you love her you are going to have to get to the point where you accept there is no quick fix, and ask her to just trust her body to heal. Wishing you both well xxx

1 hour ago, HopeOfHealing said:

How do we know if this will pass or if it needs treatment?

1 hour ago, HopeOfHealing said:

But at the back of our heads there is a question of if this is a depression that needs urgent treatment.

Psychiatrist here. Previous Clinical Director in the NHS. This is not an Agitated Depression. I have seen and treated that throughout my career. History and symptoms need to be combined when making a diagnosis, and you are just going on symptoms. I have followed the history, and this is Psychiatric Drug Withdrawal. I don't know why you wouldn't believe this, coming from me, who has 20 years of experience AND a lived experience of withdrawal.

4 hours ago, HopeOfHealing said:

My wife says she feels as if the depression is progressing and she is sliding deeper and deeper in it and that something needs to change. That this is something she hasn't experienced before in these years. I am not 100% sure, as I have seen her in some very dark places, however, I think this is because of the start of this wave in August was so... unexpected. And it didn't resolve so we switched to medication. That broke the believe system that waves come and go on their own. She says - "See! That time it didn't go away on it's own!" That broken belief is a heavy rock.

You did not give the wave even close to enough time to dissipate on its own before you started to try more drugs. Waves can last for many months. You have now disrupted the natural healing process by adding in and removing new drugs. I understand that you've tried several new drugs with poor consequences, and Hope has many other drugs listed in her signature that she seems to have reacted badly to. I really can't imagine at this point why you would think that more different drugs would be the answer.

We are all thinking about Hope and want the best for her. If there was a solution that didn't involve just passing the time and suffering until the body heals, we would never keep that from her. Unfortunately, the community's vast experience shows that there is not. But the flip side is that Hope can absolutely recover in time if you stay away from more drugs.

Been following this thread for a while, and it breaks my heart to see this happened when she was more or less functional, sleeping and even exercising. I would've thrown out all that sleep tracking garbage that does nothing but create anxiety, and focus on sleep hygiene to create an environment where you want to disconnect. I had a smartwatch from a good brand, and it logged sleep while I was still awake, or said I was awake when I wasn't. Ended up selling it to not feed the obsessions.

It's also quite harsh to reinstate Mirtazapine at such dose. I remember the first time I tried it, it was 3mg or so because I'm always weary of such medications. Yet it knocked me out to sleep 12 hours at least, feeling like a zombie the next day too needing to nap. And other kinds of medications like antipsychotics destroyed me for a very long time. Couldn't handle more than a pill. The only medication that ever worked for me, was escitalopram only, with benzos used only in extreme cases. But now after quitting it's a whole other story.

I pray she can bounce back from this, medicated or not, and doesn't reach the state that many of us are in.

Edited Wednesday at 01:09 PM4 days by ALonelySoul12

5 hours ago, HopeOfHealing said:

Hey forum! Update on my wife's situation:

My wife slept better last night, but woke again with overwhelming fear. She wakes during the night frightened, almost trembling, and starts the day with intense anxiety and tight breathing. Nothing feels good or comforting anymore. Food, going outside, seeing people, normal activities, nothing brings relief. She is barely functioning and has recurring thoughts about death, not because she wants to die, but because the suffering feels unbearable.

We are very confused. How do we know if this will pass or if it needs treatment? From one side I get that this could this still be a wave combined with recent quetiapine withdrawal that needs time to settle. But at the back of our heads there is a question of if this is a depression that needs urgent treatment. How does someone know? If I ask a doctor, they say you need immediate actions now! If I read the stories on SA and here, then the answer is wait for it to settle.

My wife says she feels as if the depression is progressing and she is sliding deeper and deeper in it and that something needs to change. That this is something she hasn't experienced before in these years. I am not 100% sure, as I have seen her in some very dark places, however, I think this is because of the start of this wave in August was so... unexpected. And it didn't resolve so we switched to medication. That broke the believe system that waves come and go on their own. She says - "See! That time it didn't go away on it's own!" That broken belief is a heavy rock.

@HopeOfHealing . Waking up with fear, trembling, etc is part of the withdrawal and wave symptoms. I had it for probably badly for like 7 months and I still experience these symptoms after 22 months journey, but they are a lot weaker and part only few hours in the morning. Cortisol is what makes us be ready to walk up and these medications affects it creating panic, anxiety, fear, etc after 4am. In a normal CNS, we just normally wake up, but because we have antidepressants injury, the symptoms just triple creating all those symptoms you mentioned. As days goes by, Cortisol reduces and body start feeling better.

I know it's a very sad situation that we have all experienced and still experiencing. unfortunately, doctors are not really aware of these issues and might not even believe that withdrawal can takes years before body feels a lot better.

Look at it this way.... Body got use to the medication becoming dependable from it. After a cold turkey, the body goes, "wait a minute, where is my drug, I need it, and goes into panic". Now, since the body needs to function as normal, it says"Well, I need to function, I must repair the damage". Then body starts repair the damage (waves and withdrawal) to find balance again from the damage created by one drug. The body starts repairing itself creating more serotonin, transporters, etc...the person, out of desperation, introduce another drug into the damage body. Now, the body says, "what the heck?, what is this new drug, I'm trying to fix everything, but now I have to go back and fix the body with this new drug"....now, the body desperately try to find more balance causing longer waves and withdrawal. But if the person stop introducing new drugs to the sensitive system, the body will eventually said, "Finally, no more new drugs in a while, let me continue rebuilding this body" and eventually, waves becomes shorter and shorter and longer windows.

It's takes time, acceptance, and patience.

It's easier to say then to do, and we might not have control of the body and symptoms, but we do have control of our mind and accept it. Float on it and ride it out...

At the end, it's a personal decision, and in my case, I listen to the people who have been in this journey and got out. We all have experienced same symptoms, and unfortunately, our science failed us....doctors failed us, and the only good doctors who understand this are the ones who had healed from this too and went through same hell.

@HopeOfHealing trust your body, stop putting more fire. It's painful, but you are stronger than this...body knows how to heal.

Prayers for you and your family...

1 hour ago, Raymond said:

@HopeOfHealing . Waking up with fear, trembling, etc is part of the withdrawal and wave symptoms. I had it for probably badly for like 7 months and I still experience these symptoms after 22 months journey, but they are a lot weaker and part only few hours in the morning. Cortisol is what makes us be ready to walk up and these medications affects it creating panic, anxiety, fear, etc after 4am. In a normal CNS, we just normally wake up, but because we have antidepressants injury, the symptoms just triple creating all those symptoms you mentioned. As days goes by, Cortisol reduces and body start feeling better.

I know it's a very sad situation that we have all experienced and still experiencing. unfortunately, doctors are not really aware of these issues and might not even believe that withdrawal can takes years before body feels a lot better.

Look at it this way.... Body got use to the medication becoming dependable from it. After a cold turkey, the body goes, "wait a minute, where is my drug, I need it, and goes into panic". Now, since the body needs to function as normal, it says"Well, I need to function, I must repair the damage". Then body starts repair the damage (waves and withdrawal) to find balance again from the damage created by one drug. The body starts repairing itself creating more serotonin, transporters, etc...the person, out of desperation, introduce another drug into the damage body. Now, the body says, "what the heck?, what is this new drug, I'm trying to fix everything, but now I have to go back and fix the body with this new drug"....now, the body desperately try to find more balance causing longer waves and withdrawal. But if the person stop introducing new drugs to the sensitive system, the body will eventually said, "Finally, no more new drugs in a while, let me continue rebuilding this body" and eventually, waves becomes shorter and shorter and longer windows.

It's takes time, acceptance, and patience.

It's easier to say then to do, and we might not have control of the body and symptoms, but we do have control of our mind and accept it. Float on it and ride it out...

At the end, it's a personal decision, and in my case, I listen to the people who have been in this journey and got out. We all have experienced same symptoms, and unfortunately, our science failed us....doctors failed us, and the only good doctors who understand this are the ones who had healed from this too and went through same hell.

@HopeOfHealing trust your body, stop putting more fire. It's painful, but you are stronger than this...body knows how to heal.

Prayers for you and your family...

Excellent post, @Raymond !

Dear @HopeOfHealing , hang on, you will not find a fast solution, but by being patient and waiting, you will get better, that’s for sure! My experiences match exactly with what I Raimond described and you will make the same experience: if you keep everything steady, there will be more windows, shorter waves. Even though there can be very long and heavy waves in between and then this is the tricky moment not to give up and keep a steady course. Focus your attention on something good, for example the love of God or the fact that you are not alone and that your husband is at your side. There are still many things to be thankful for! It takes inner strength to learn acceptance but you will learn it and get even stronger in the process.

@HopeOfHealing 's husband and Hope. I'm not gonna go in such length with my comment because @Luke @Chippy @Sminismoni @SarahMc @Raymond they have given you wonderful advice, and they as myself , and I just need to be straigh and up front, but please do not introduce any further drugs, as you can see it's just furthered her suffering. I had a wave that lasted 5 months and it did get better. Hope's body knows how to heal, so just give it the time it needs and it will get better. All my love to both of you. ❤️

@HopeOfHealing husband here.

7 hours ago, Nemina said:

I do not think that you have waited long enough during this wave. You would have made the experience that also this wave would have gone on its own. Instead, you have made the experience that the additional medication you took made things worse.

@Nemina Ohhh... believe me, we have been thinking a lot about this. But at the point we were really really desperate. You know how it feels? Like someone is drowning next to you and you have to believe that they will learn to swim while they are screaming for help. At that point, that pill looks like a nice lifejacket. Of course it turns out to be more like an anchor I guess..

7 hours ago, Luke said:

Many of the questions you're asking are coming from a place of doubting whether we know what we're talking about or not.

@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.

7 hours ago, Chippy said:

Both of you need to work on your acceptance. You love her, because you love her you are going to have to get to the point where you accept there is no quick fix, and ask her to just trust her body to heal.

@Chippy I agree. Problem is that she and I... we are A type personalities. Controlling, impatient, wanting a clear plan and act on it. And acceptance is.. well lack of action. And it is soooo hard to do that. Like my example above about drowning or sinking in quick sand.. While you think you are going to lose you mind. This is really terrifying.

7 hours ago, Chippy said:

You love her, because you love her you are going to have to get to the point where you accept there is no quick fix, and ask her to just trust her body to heal.

Oh man.. I do! And that is why I have put helping her as my main priority in life.

7 hours ago, Sminismoni said:

I don't know why you wouldn't believe this, coming from me, who has 20 years of experience AND a lived experience of withdrawal.

Sorry @Sminismoni, didn't mean to be disrespectful and wasn't aware of your experience. I do agree with you on Psychiatric Drug Withdrawal.

7 minutes ago, HopeOfHealing said:

So... Many times my wife is doubting that anyone else has had as a terrible experience as her.

Listen to this clip. https://youtu.be/lDvyrIinjts?t=1821

I get the same exact thoughts. It's just the shitty state of mind we're in.

Edited Wednesday at 04:38 PM4 days by Kahran

4 hours ago, SarahMc said:

If there was a solution that didn't involve just passing the time and suffering until the body heals, we would never keep that from her. Unfortunately, the community's vast experience shows that there is not. But the flip side is that Hope can absolutely recover in time if you stay away from more drugs.

@SarahMc That is a great point.

That raises one question... "if you stay away from more drugs". Hope is still using daridorexant (Quviviq) for sleep. It seems to be helping somewhat with improving it, but honestly, the drug has not enough track record to actually say it's impact on a sensitive nerve system. It is said to be mild and safe, but seems that is the marketing slogan for ALL of the drugs. Idk.. maybe @Sminismoni you have had any experience with it? Or is the answer to just stop everything (asking but I kinda expect that I already know the answer)

3 hours ago, ALonelySoul12 said:

It's also quite harsh to reinstate Mirtazapine at such dose. I remember the first time I tried it, it was 3mg or so because I'm always weary of such medications. Yet it knocked me out to sleep 12 hours at least, feeling like a zombie the next day too needing to nap.

@ALonelySoul12 Yep... Well she used to be on 15.. then 7.5. then 3.75.. then... i guess for a few days on 1.87 and then 0. And at 3.5 and 1.87 the sleep was not really there. So the doctor said it is "safe" to reinstate to 7.5 and see how the body reacts if it would block the H1 properly. It didn't, but made next day terrible. Did that for two days and then stopped.

3 hours ago, Raymond said:

ody got use to the medication becoming dependable from it. After a cold turkey, the body goes, "wait a minute, where is my drug, I need it, and goes into panic". Now, since the body needs to function as normal, it says"Well, I need to function, I must repair the damage". Then body starts repair the damage (waves and withdrawal) to find balance again from the damage created by one drug. The body starts repairing itself creating more serotonin, transporters, etc...the person, out of desperation, introduce another drug into the damage body. Now, the body says, "what the heck?, what is this new drug, I'm trying to fix everything, but now I have to go back and fix the body with this new drug"....now, the body desperately try to find more balance causing longer waves and withdrawal.

@Raymond Thank you for the analogy. 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.

17 minutes ago, Bernadette said:

I had a wave that lasted 5 months and it did get better. Hope's body knows how to heal, so just give it the time it needs and it will get better. All my love to both of you. ❤️

Thank you @Bernadette 💙 The 5 month timeline is terrifying tho as what Hope will say is "5 months of this unbearable suffering???" but I do understand that that is not what you mean. It is more about the bad period that can be in various intensity, can last that long. Still scary to imagine to be honest. All the past waves resolved in max 6 or 8 weeks. So this now.. is hard. But well yea... as @Luke said, this is no longer a wave but an acute stage.

@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.

Yes, most of my patients tolerate Daridorexant. Most do not report side effects. Only one person has so far stopped it cold turkey. That person was fine, so far.

But Hope has a very, very damaged central nervous system and that doesn't mean Daridorexant will be okay for her.

Water is a natural substance. Most people on earth tolerate water just fine. But someone with kidney impairment or low sodium can die from one extra glass of water. The same with Daridorexant. The problem with the doctors you are consulting is that they are giving advice and prescribing based on ignorance of the underlying vulnerability.

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.

1 hour ago, Kahran said:

Listen to this clip. https://youtu.be/lDvyrIinjts?t=1821

Damn, @Kahran! Veeeeery on point! Very much so! Thank you!

37 minutes ago, Sminismoni said:

they are giving advice and prescribing based on ignorance of the underlying vulnerability

@Sminismoni You are right. Doctor said she has "few percent" of such cases that are very sensitive. Which is reassuring. But then in next sentence she suggest another z-drug which my wife doesn't tolerate. Proving that she misses the point and doesn't account for the underlying vulnerability.

Will try to taper off it. In theory just could CT it as she has used it few days only. Just a question on how the night will go. DORA was good in providing that first initial signal to the brain to sleep allowing for deep sleep at the first part of the night.
But I guess... There is no other way but through. 🤷‍♂️

1 hour ago, HopeOfHealing said:

Thank you for the analogy. 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.

It will stabilize trust all of us. It's inhumane what these medications can do and doctors won't even believe. @HopeOfHealing husband.....keep motivating her. This will make her to have encouragement. My wife did the same when I was struggling like your wife. My wife was my best coach in all this. She lifted me, and believed what I was experiencing that no human can actually see. The symptoms are real, yet no one can detect..... believe her! And she has to believe that everything is not her. This is not her. It's these damn medications making all of us miserable....there is a light ahead. Don't give up on her......