Hey guys, girls, everyone! 🙏

Thank you so much for the input and encouraging words. I see you put a lot of effort and thought into it! I will try to come back to you all throughout the day in details.

Just wanted to add that we are now trying to remove the Valdoxan, but of course change doesn’t come first day.

The issue is that it isn’t just sleep that is impacted. She is having this unbearable restless sensations inside my head and throughout her body. She can’t find relief anywhere, not walking, showering, driving, lying down or standing up.

It has reached a point where it’s difficult to be anywhere, communicate or even be around other people. Eating, drinking or showering feels extremely difficult and unpleasant. Existence itself feels unbearable.

This is nonstop suffering that she cannot escape from, and as she says have never experienced anything like this before, not before medication, while taking medication, or during withdrawal.

What scares me is that nothing seems to change it. She already felt very unwell before restarting medication, that is why we decided to try. And now still extremely unwell after trying medication. So I don’t know anymore whether the drugs are making this worse.

This is after about 21 months of gradually recovering and eventually doing quite well. Now the suffering is so intense that she constantly has thoughts of dying just to escape the sensation, and also considering to go to the hospital because she don’t know how long she can tolerate it.

Damn scary time. I am trying to support her with or without medication, but at some times seems like I am torturing her with the thought of “give it time”.

@HopeOfHealing This sounds a lot like inner and outer akathisia. I can only imagine the torture, and to have this happen at 21 months off is heartbreaking. People can and do recover from akathisia, but it can take a long time. I won't mince words. It is one of the most severe withdrawal symptoms and not everyone makes it to the finish line. It is one of the tragic realities of WD.

Hospital will inevitably involve medication. I cannot post details of patients I have seen, but I have personally seen this fail to improve things no matter how many interventions are trialled. I can assure you that even if more medication doesn't make it worse, it won't make this better. I am so sorry there aren't solutions here.

But we will support Hope no matter what.

@HopeOfHealing's husband, I'm not sure what else we can say. It seems very clear to me that Hope is now experiencing akathisia, which is a state of extreme distress and agitation caused by a severely destabilized nervous system made worse by more drugs. If you google akathisia it will clearly tell you that it is a drug-induced condition.

Please continue to keep us updated.

I would strongly recommend that Hope finds a healing buddy or 1:1 support in addition to posting here. In person support and coaching can be really helpful. Here are a couple I have tried. Both lovely to talk to, just wasn't right for me at this time.

Withdrawal Groups & Coaching https://share.google/cYn9bZS5GJGOKt155

Barbara Bell Coaching https://share.google/8tDgooKcoDMifVZlg

4 minutes ago, Sminismoni said:

I would strongly recommend that Hope finds a healing buddy or 1:1 support in addition to posting here. In person support and coaching can be really helpful. Here are a couple I have tried. Both lovely to talk to, just wasn't right for me at this time.

Withdrawal Groups & Coaching https://share.google/cYn9bZS5GJGOKt155

Barbara Bell Coaching https://share.google/8tDgooKcoDMifVZlg

Seconded. And I would add Chris Paige, who went through years of severe akathisia himself and was trained as a therapist pre-withdrawal: https://www.chrispaigelcsw.com/

@HopeOfHealing s Husband. I am so sorry to hear this. Unfortunately from what you are saying the additional drugs seemed to have caused this. I think avoiding adding more drugs to this mess is a good idea. I know that won't surprise you to hear us saying. People can totally get through akathisia, it is a very scary symptom however like all WD symptoms giving some time and lots of support she can 100% get through this. I think @Sminismoni idea of some 1:1 support is a very good idea indeed. Please keep us up to speed with how she is doing. Sending my love. xxx

@HopeOfHealing husband. We all here want to say hopeofhealing is so profoundly loved and supportive here and definitely do what is best, please do keep us all updated as she is so very loved in this community. You are truly a very caring, compassionate and understanding husband during this process. Hugs from all of us🤗❤️

There aren’t any quick solutions to this kind of brain injury, unfortunately. Continuing to add meds is like dropping bombs on her nervous system. Please put a safety plan into place for Hope should things get even worse. Hopefully the psychiatrist who added the 4 new meds recognizes the worsening of her condition and can help with a safety plan.

@HopeOfHealing and husband, my heart goes out to you. I also was misguided (and ultimately coerced) to take a medication said to help, only to have my symptoms become unbearable. The only comfort I can give is that the akathesia has been lessening over time by not taking ANYTHING other than my nightly Ambien. (Do not view the Ambien as a solution)

It's a truly horrific experience I wouldn't wish on anyone. But a lot of people walked this path and can get through it and get better. There just needs to be enough time.

On 10/2/2026 at 9:39 AM, Luke said:

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

For sure it is! It is like torture where I am not the one being tortured, but it is the love of my life. I would trade places with her, but I cannot. Which leaves me to make decisions to support her, as she doesn't feel well enough to decide on her own, but if I make the wrong decision, she is hurt even more. So... the stakes are high my friend.

On 10/2/2026 at 9:39 AM, Luke said:

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.

Yep! Same feedback I got from a therapist specialised in WD. His suggestion was to stick to ONLY few targeted solutions.
1. Melatonin - not magical, but sends a signal to the brain that it is bed time because during this wired state with few hours of sleep per night, the body is just totally confused of what tie it is.
2. If desperately cannot switch the brain off in no way, then use some antihistamine, just to send a signal to the awakens center part of the brain H1 receptor to shut down. Not as a long term solution but as a short term rescue.

On 10/2/2026 at 9:39 AM, Luke said:

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.

I see where you are coming from, but I also understand her. She has repeatedly said that the state is so unbearable that she just wants to die. And she doesn't say this to get attention. She has my full focus 24/7. In such case even electrics shock therapy, ketamin, hypnosis, needle therapy or anything seems to make sense. Everyone around say - talk to a doctor and the doctor says pills. So even if it is unlikely... the decision came from desperation.

On 10/2/2026 at 11:43 AM, Chippy said:

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.'

I agree. Yesterday we didn't take the Valdoxen dose and we are planning to skip todays and work through it. We made a symptom log to measure feelings 3 times a day.

On 10/2/2026 at 7:12 PM, Raymond said:

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.

Thank you for these suggestions. A lot of good stuff that will try to integrate into our day to day.

4 hours ago, Sminismoni said:

would strongly recommend that Hope finds a healing buddy or 1:1 support in addition to posting here. In person support and coaching can be really helpful. Here are a couple I have tried. Both lovely to talk to, just wasn't right for me at this time.

Withdrawal Groups & Coaching https://share.google/cYn9bZS5GJGOKt155

Barbara Bell Coaching https://share.google/8tDgooKcoDMifVZlg

@Sminismoni & @SarahMc thank you for the coaching suggestions. We actually also have one contact that she did speak to multiple times - Lucy Fernandes (from https://iipdw.org/board-associates/)

3 hours ago, Chippy said:

akathisia, it is a very scary symptom however like all WD symptoms giving some time and lots of support she can 100% get through this.

Man I hope! When she says like "ants in the brain" and the feeling she said is "feels like the only way to switch it off is by running with her head in the wall" Scary scary stuff!

1 hour ago, Wildflower said:

Please put a safety plan into place for Hope should things get even worse.

@Wildflower what would that be? Hospital? I honestly don't really know. This is what she is asking me constantly - what is the plan b.. c.. d... before the plan z which is to jump off a bridge.

59 minutes ago, Kahran said:

nightly Ambien.

@Kahran This is a z-drug, right? Yea.. Wouldn't be a solution for my wife. Anything that couches GABA system (even slightly) triggers massive anxiety. But yea.. I agree that what I see from other stories is the at the akathisia should decrease over time.

ONCE AGAIN, THANK YOU ALL FOR THE INPUT! Mean a lot to me! 💪

38 minutes ago, HopeOfHealing said:

This is a z-drug, right? Yea.. Wouldn't be a solution for my wife. Anything that couches GABA system (even slightly) triggers massive anxiety.

Definitely. I'm only on it cause I've been on it for 8 years. It only really turned on me this year. Looking to taper and get off this poison.

I'm praying for Hope. We walk together.

@HopeOfHealing s husband, sending lots of love and keep us posted. x

Ok. So... Morning update is that we had sleep, quite a bit of it actually. Shows >7h. This was with the combination of 1+1mg of Melatonin in the evening. Took one to signal bed time. 1h later didn't feel significant effect (might have been a delayed reaction) and then. some 45 min before bed took 6.25 quetiapin which at that does should work mainly blocking H1 receptor and shutting the body down for sleep. Garmin shows that the sleep was "fair" although the subjective feeling she has that it was still very shallow and not really restful. Very functional - I slept to be able to continue suffering.

Today she woke up with a very strong depression feeling. Thoughts go in circles - "there is no solution", "I will have to go to the hospital", "maybe I need to start an antidepressant", "doctors say depression can only be treated with medication" etc. Seems like more sleep gave the body more energy to feel more anxiety. Quite cruel system. I am searching for a physiological explanation as I know my wife for more than 16 years. I know how she was in august and early september. This feeling is not her. I hope it will pass, but the thought that is torturing her is that perviously it didn't easily pass and that led her to ADs. But somehow I have hope.

3 minutes ago, HopeOfHealing said:

Today she woke up with a very strong depression feeling. Thoughts go in circles - "there is no solution", "I will have to go to the hospital", "maybe I need to start an antidepressant", "doctors say depression can only be treated with medication" etc. Seems like more sleep gave the body more energy to feel more anxiety. Quite cruel system. I am searching for a physiological explanation as I know my wife for more than 16 years. I know how she was in august and early september. This feeling is not her. I hope it will pass, but the thought that is torturing her is that perviously it didn't easily pass and that led her to ADs. But somehow I have hope.

My heart goes out for you. Give your wife a big hug. You’re such a beautiful and lovely partner. ❤️

2 hours ago, HopeOfHealing said:

took 6.25 quetiapin which at that does should work mainly blocking H1 receptor and shutting the body down for sleep.

No one here recommends drugs. But if you are going this route, PLEASE find an alternative to Serokill. That poison really messes with appetite and cause a permanent movement disorder called Tardive Dyskinesia even at lower doses.

It is possible to heal. I was going down that same route where I tried Hydroxyzine and Benadryl to try to "calm down". As soon as they wore off, I'd be going crazy again. I can say that after maybe 2 months clean, my akathesia has gone down significantly. I went from rocking back and forth in the bed to only needing to pace back and forth.

Objectively speaking, it is getting better. But whether its 100% or 10%, akathesia is still hell. I can really relate to Hope right now.

I just wanted to chime in and add that I have found that a very heavy weighted blanket (ordered online) has helped me settle better on restless nights and when I feel wired. I fold it up 4 times and it is like putting a pile of rocks on my chest, but it does help.

On 10/3/2026 at 7:09 PM, HopeOfHealing said:

Yep! Same feedback I got from a therapist specialised in WD. His suggestion was to stick to ONLY few targeted solutions.
1. Melatonin - not magical, but sends a signal to the brain that it is bed time because during this wired state with few hours of sleep per night, the body is just totally confused of what tie it is.
2. If desperately cannot switch the brain off in no way, then use some antihistamine, just to send a signal to the awakens center part of the brain H1 receptor to shut down. Not as a long term solution but as a short term rescue.

The feedback you're getting here is not to experiment with drugs and not to take substances aimed at short term symptom relief. We specifically do not recommend antihistamines for short term symptom relief as they carry a risk of making things worse outside of the near term.

As for being specialised in withdrawal, there is next to no science done on it whatsoever. There is no "specialising" in it.

The suggestions here are based on decades' worth of patient experiences across various support groups. The suggestions you are getting from anyone claiming to specialise in it are coming from someone who cannot possibly understand it on a scientific level, because this is not yet understood by medical science.

I could also start charging people money for withdrawal advice, and hey presto, I would be a withdrawal specialist.

You can choose who to listen to, but I'd advise you to consider the above when talking to people claiming to be experts.

On 10/3/2026 at 7:09 PM, HopeOfHealing said:

I see where you are coming from, but I also understand her. She has repeatedly said that the state is so unbearable that she just wants to die. And she doesn't say this to get attention. She has my full focus 24/7. In such case even electrics shock therapy, ketamin, hypnosis, needle therapy or anything seems to make sense. Everyone around say - talk to a doctor and the doctor says pills. So even if it is unlikely... the decision came from desperation.

We intimately understand the symptoms of drug harms due to direct personal experience. Your wife presents as a classic example of such symptoms, which have worsened, exactly as we predicted, when new drugs were introduced. We predicted this because we see it all the time.

Here is an example of the classic cycle we see time and time again:

1. Person is harmed by these drugs

2. Person takes more of these drugs to try to get relief from these harms

3. Person is even worse and multiple drugs are in the mix

4. Person now seeks to try option 2 even more because things are even worse

5. Even more harm

2 and 3 have just happened, you are seeking number 4.

On 10/3/2026 at 7:09 PM, HopeOfHealing said:

Yesterday we didn't take the Valdoxen dose and we are planning to skip todays and work through it.

Skipping doses is not a safe tapering method for people who are sensitive to these drugs.

On 10/4/2026 at 11:32 AM, HopeOfHealing said:

I am searching for a physiological explanation as I know my wife for more than 16 years. I know how she was in august and early september. This feeling is not her. I hope it will pass, but the thought that is torturing her is that perviously it didn't easily pass and that led her to ADs. But somehow I have hope.

This is all absolutely classic of the harms done when people continue to add further drugs into the mix once harmed by psychiatric drugs.

She's not herself because these drugs alter brain function. Adding in further substances that act on how the brain functions is unlikely to return her to a pre-drug baseline, and based on what we repeatedly see it often leaves people even further away from such a state. You have learned this the hard way, but want to persist with adding in more drugs to see if it somehow turns this around.

We're only telling you this because we want to prevent harm, and most of us want to prevent harm because we have directly experienced it ourselves.

On 10/4/2026 at 5:32 AM, HopeOfHealing said:

Ok. So... Morning update is that we had sleep, quite a bit of it actually. Shows >7h. This was with the combination of 1+1mg of Melatonin in the evening. Took one to signal bed time. 1h later didn't feel significant effect (might have been a delayed reaction) and then. some 45 min before bed took 6.25 quetiapin which at that does should work mainly blocking H1 receptor and shutting the body down for sleep. Garmin shows that the sleep was "fair" although the subjective feeling she has that it was still very shallow and not really restful. Very functional - I slept to be able to continue suffering.

Today she woke up with a very strong depression feeling. Thoughts go in circles - "there is no solution", "I will have to go to the hospital", "maybe I need to start an antidepressant", "doctors say depression can only be treated with medication" etc. Seems like more sleep gave the body more energy to feel more anxiety. Quite cruel system. I am searching for a physiological explanation as I know my wife for more than 16 years. I know how she was in august and early september. This feeling is not her. I hope it will pass, but the thought that is torturing her is that perviously it didn't easily pass and that led her to ADs. But somehow I have hope.

I feel sorry for her and the terrible these medication do to our nervous system and brain. We have been there and we understand her symptoms.

Prayers for her and you. She needs a lot of love and strength to let the body come out of it natural.

I wanted to give a quick update on how my wife is doing.

While sleep with quetiapine and melatonin was actually quite ok, but quetiapine seems to be causing or worsening severe daytime terror, starting from the moment of waking and lasting throughout the day. Naturally, being stuck in that state also drives the depression and hopelessness.

Yesterday evening we started reducing the quetiapine, taking just over 1/8 of a 25 mg tablet. Sleep was still there, but very fragmented.

The positive sign is that this morning the intense terror feeling seems significantly lower than yesterday. Obviously it’s too early to draw conclusions, but it gives us some hope that quetiapine may have been contributing to it.

For now, the plan is to continue cautiously reducing it and hope that sleep gradually catches up and stabilizes as the system adjusts.

Update: Lowered quetiapine (Seroquel) first to 1/4 then 1/8 and now yesterday skipped the dose. She has been using it for 15 days so we decided to do a fast decrease as it seem to be driving a lot of akathisia and day time terror. At least that is how it feels - the day time terror started when she started using it. Yesterday night was bad... A lot of waking up, a lot of panic. Not sure if it is WD from quetiapine or... wave or... idk. This is really hard man! Honestly don't know what to do.

At this stage I wouldn't try to work out what is Seroquel withdrawal and what is not. I think the bottom line is that Hope's nervous system has been further activated by adding more medication into the mix, and now the previously smouldering coals have become a rushing fire. Only time can settle this from here on in.

On another note, I do hope you have stopped the Valdoxan. Useless drug in my prescribing experience and it can be associated with liver enzyme derangements, which warrant periodic blood tests. Not worth it overall.

I will be thinking of Hope and wish her well. I know this is torment.

1 hour ago, HopeOfHealing said:

Update: Lowered quetiapine (Seroquel) first to 1/4 then 1/8 and now yesterday skipped the dose. She has been using it for 15 days so we decided to do a fast decrease as it seem to be driving a lot of akathisia and day time terror. At least that is how it feels - the day time terror started when she started using it. Yesterday night was bad... A lot of waking up, a lot of panic. Not sure if it is WD from quetiapine or... wave or... idk. This is really hard man! Honestly don't know what to do.

I feel sorry for her and I pray for her recovery as well. It's a hard journey, but many in the same situation has made it out and healed.

She needs to stop adding drugs or she will continue on this mess. Time is the only healer. Trust me, we have all being there and it's not easy, but we have managed to hold into hope without putting more fire into our fragile nervous system and led the body do its magical thing to fix what the medication has done to us.

She needs to just hold and let the time passes by. It's the only way out. Adding more medication to find release won't work. Those terrible symptoms are withdrawal. We have all had it and I still get them but in a very very mild at this time and not every day. It took me all these 22 months to be at the point I am and I'm still on medication and tapering slowly, but I did not add any medications to try to feel better as I know these drugs are powerful. I just followed others people suggestion who had been there before me. It's hard, but I wanted to live without this damn medication. So I hold on the same minimal dose until my system stabilize. I don't even use supplements. Those terror symptoms are real, but it will go away. She needs to set her mind differently and just find ways to deal with as I previously stated.

Prayers for her and you.

3 hours ago, HopeOfHealing said:

Update: Lowered quetiapine (Seroquel) first to 1/4 then 1/8 and now yesterday skipped the dose. She has been using it for 15 days so we decided to do a fast decrease as it seem to be driving a lot of akathisia and day time terror. At least that is how it feels - the day time terror started when she started using it. Yesterday night was bad... A lot of waking up, a lot of panic. Not sure if it is WD from quetiapine or... wave or... idk. This is really hard man! Honestly don't know what to do.

I agree with @Sminismoni that it's really no use trying to attribute any particular symptoms to one drug or another at this point. The reality is that Hope's nervous system was incredibly sensitive and has now been harmed further by adding in more drugs. The only way through now is to stay off the drugs and give things lots and lots of time.

Please be prepared for the time it may take for this to resolve. I know it's unimaginably awful, but these injuries do heal given enough patience if you stay away from further drugs. You've already seen what can happen when you decide it's been too long and turn to drugs again.

Thinking of you and Hope and sending strength your way 💜

Update:
Toady continues to bring unbearable physical anxiety, difficulty breathing, constant pacing/need to walk, severe restlessness especially in her head, and brain fog. It’s so intense she sometimes feels she doesn’t want to live, although she desperately wants to recover.

Main drug that we used in these past two weeks was quetiapine, because it seemingly helped to fall asleep, but it did have an awful "kick-back" when waking up. She was on a low dose tho... 6.25 (1/8 of a tablet), but I guess that doesn't matter for a sensitive system it is still a big shock. And now of course the question is if this is now withdrawal, prolonged insomnia, original wave or something else.