4 hours ago, SarahMc said:

I have had many nights like this. Again, I don't know why this happens, but I think this is a normal pattern of sleep disruption in withdrawal.

@SarahMc Thank you for sharing. The scary part for me is the length. A day or two I can get through. But a week of this is terrifying me.

1 hour ago, Fullhealing said:

however there are other factors that can contributes

@Fullhealing you are correct. I do try to keep all the main metrics in check, but this is a good reminder.

1 hour ago, Fullhealing said:

lack of awareness drove me to this point... big regret!

Lack of awareness that PAWS could happen?

9 hours ago, Chippy said:

I know how you feel today so so very well. You are not alone, it is making me feel quite emotional writing this actually. Breaks my heart, it is so hard I know. You have got this tough, I know you do. xxxxx

@Chippy thank you for the words. The way you said it makes me feel like you truly have been here in the same place and know the feeling and as bad as it sounds, it is somewhat helpful to hear that others have been there and survived. 💗

On 8/18/2026 at 2:58 AM, HopeOfHealing said:

Hey!

Wanted to give an update as well as find some support from others who know how it is. I already wrote a bit in @Chippy story https://antidepressantrecovery.org/topic/6-chippy-short-term-use-of-mirtazapine-wd-after-ct/page/17/#comment-27312 that while many things I would say have improved, my sleep is the remaining part of the injury. And I do say "injury" as that is how it was described to me - something that is hurt and takes a long time to heal and might remain as my weak point that I need to watch out for (such as a weak ankle would be).

@Chippy and @Some0n3 talked about acceptance. The "it is how it is". For me this is very challenging. As the name of my topic suggests, "sleep problems" have been my main issue. All my encounter with AD's started with sleep issues. This was with my first use of any such medication and the situation did stabilise and I was able to get off the medication. But in August 2023 I again experienced significant sleep issues that lead me back to the doctor and back on medication. The fact that it was August, second part gives me a deja vu feeling because in past few days I have had 3 rough almost sleepless nights (few broken hours). And the feeling is terrifying as it seems like your brain cannot turn of. Like you would be standing in front of "the sleep door", but the door just doesn't open. And I am trying my best, but it is so tiring. There seems to be no clear explanation and I don't really know how to solve it. I am tired, but wired. My body can be relaxed a bit by a massage, but then once I climb into bed my heart starts racing and I just cannot shut it down. At least I don't know how.

So I am here, looking for support. Any advice. Any suggestion how to tackle this. Only real correlation I have noticed is with my period - sleeps seems to deteriorate around when it starts. But I don't know.

Once it feels like a true improvement, then something slaps you back down and you feel hopeless.

Hello @HopeOfHealing . Sorry that you are still dealing with the sleep issues. I think, as I read, it's the last area that gets resolved and depending if it was an issue before medication. I'm still on these withdrawals symptoms. Acceptance is hard to take when I just want to feel great, but it's the only way out....

44 minutes ago, HopeOfHealing said:

Lack of awareness that PAWS could happen?

Exactly, was, still is.. such a mess

Good morning. I am writing after another very difficult night. I slept a little over 3 hours in total, about the same as the previous night.

Before bed I was watching a movie with my children on the sofa. After a shower, lying under a blanket, I accidentally drifted off to sleep. I wasn't trying to sleep, it just happened. My family woke me about 5-10 minutes later so we could all go to bed.

But once I was actually in bed and trying to sleep, the tension returned. It took me around 3 hours to fall asleep for the first time. Spending all that time lying in bed unable to sleep created enormous anxiety. The longer I was awake, the more frightened and tense I became. My heart was pounding and it became increasingly difficult to feel comfortable in my own body.

I try to accept what is happening and not fight it, but it is incredibly difficult when hour after hour passes and sleep doesn't come.

Looking at my Garmin, my stress remained very high during the night. It seems I managed to properly fall asleep twice, going from light into deep sleep, but without recorded REM. Those periods of sleep were actually a reasonable length, there simply wasn't enough sleep overall.

Yesterday I walked a lot because I wanted to give my body a way to release some of this tension. I tried to give all this nervous energy somewhere to go, but at least last night it didn't seem to help me sleep.

This is now the 7th night in a row with severely disrupted sleep and I feel like my resources are running out.

I talked to my husband about whether I need to speak to a doctor and try to find some kind of solution. I really don't want to go back onto medication after what I experienced before. At the same time, I know people who can take something for sleep or anxiety for one night, recover a little, and then never take it again. But knowing how sensitive I became to medications, I am scared of that too.

What I really want is to find a professional who will genuinely listen to my history and understand my situation, and help me find a way forward that won't make everything worse. I honestly don't know what the right choice is anymore. I just feel that I need some kind of help or solution.

I am trying to accept the situation. I am trying not to force sleep and instead allow my body to drift into it naturally. But sometimes the anxiety and fear become so intense that even my hands start shaking.

I pray. I try to trust God's guidance as @Bernadette also suggested. That He will protect me and wants good things for me. Right now I am trying to hold onto that trust when I don't know myself what I should do next. Any advice? All would be much appreciated!

@HopeOfHealing it has been a week of bad sleep, because you're in a wave.

You could explore non drug interventions, but it is likely that this will pass in time. I know little about these, but they do exist, such as hypnotherapy, general sleep studies etc.

I know that you're struggling to wrap your head around sleeping badly for a week at 20 months out, but for many in this timeframe that's been how they've been sleeping throughout.

This is a rough patch, and I think it is premature to begin to panic and start seeking interventions based on some days of poor sleep.

It's quite likely that the first thing a professional will suggest is strictly maintaining good sleep hygiene. Is this something you are doing? The data above seems to indicate a very late bedtime. I would recommend a consistent early bedtime and staying in bed to rest for the night no matter what, unless you need the bathroom. If seen studies indicating that closing your eyes and resting for a period of time has some of the benefits of sleep.

@HopeOfHealing I think you are letting seondary sleep anxiety get the better of you. I recognise it. The shaking hands. I would get shaking legs. This is a fear response to the difficulty you have now got to sleeping in your wave. I don't think this is causing the problem, but I do think you are trying to accept rather than actually accepting. They are not the same thing. Accepting means radically not caring how many hours it takes to sleep, how long you sleep. Instead being greatful for what little sleep you did get and trusting that although this doesn't feel good, you will get enough to keep going. Trust me you will. As Luke has said, 1 week poor sleep is not enough to start to panic, and you shouldn't panic anyway. Many of us are dealing with poor sleep for much longer. Taking things can make it all worse. Just have some faith and work on that radical acceptance some more. Don't look at the clock, don't get up. Just set a bed time, same everynight, go to bed, stay there till the alarm and chill. Rest. That is it. Don't try to sleep and don't try to accept. Just nothing....... Be at peace

3 hours ago, HopeOfHealing said:

Good morning. I am writing after another very difficult night. I slept a little over 3 hours in total, about the same as the previous night.

Before bed I was watching a movie with my children on the sofa. After a shower, lying under a blanket, I accidentally drifted off to sleep. I wasn't trying to sleep, it just happened. My family woke me about 5-10 minutes later so we could all go to bed.

But once I was actually in bed and trying to sleep, the tension returned. It took me around 3 hours to fall asleep for the first time. Spending all that time lying in bed unable to sleep created enormous anxiety. The longer I was awake, the more frightened and tense I became. My heart was pounding and it became increasingly difficult to feel comfortable in my own body.

I try to accept what is happening and not fight it, but it is incredibly difficult when hour after hour passes and sleep doesn't come.

Looking at my Garmin, my stress remained very high during the night. It seems I managed to properly fall asleep twice, going from light into deep sleep, but without recorded REM. Those periods of sleep were actually a reasonable length, there simply wasn't enough sleep overall.

Yesterday I walked a lot because I wanted to give my body a way to release some of this tension. I tried to give all this nervous energy somewhere to go, but at least last night it didn't seem to help me sleep.

This is now the 7th night in a row with severely disrupted sleep and I feel like my resources are running out.

I talked to my husband about whether I need to speak to a doctor and try to find some kind of solution. I really don't want to go back onto medication after what I experienced before. At the same time, I know people who can take something for sleep or anxiety for one night, recover a little, and then never take it again. But knowing how sensitive I became to medications, I am scared of that too.

What I really want is to find a professional who will genuinely listen to my history and understand my situation, and help me find a way forward that won't make everything worse. I honestly don't know what the right choice is anymore. I just feel that I need some kind of help or solution.

I am trying to accept the situation. I am trying not to force sleep and instead allow my body to drift into it naturally. But sometimes the anxiety and fear become so intense that even my hands start shaking.

I pray. I try to trust God's guidance as @Bernadette also suggested. That He will protect me and wants good things for me. Right now I am trying to hold onto that trust when I don't know myself what I should do next. Any advice? All would be much appreciated!

You are not alone. It is bad feeling when you can't sleep as a normal person. It seems that you are in a wave. After months feeling good, I am waking up at 4am with anxiety and burning sensation again. It's frustrating, but we need to take one day at a time. I will suggest that to tell your kids and your husband that if you fall asleep on the sofa, not to wake you up. I had that issue during the beginning of my journey. I could fall asleep on my couch, but when I went to bed, it was all gone. It's frustrating, but tell your family not to wake you up and see if at least you sleep more. Everything will come back again. Hanging in there. Lots of 🤗 for you and 🙏.....

Hi @HopeOfHealing , I read your last few posts this morning and wanted to chime in 😊

I recognise my own struggle/experience in yours. It's very relatable!

I'm getting close to being 15 months off the medication and have also been struggling with the idea that this is just WD. Chippy and others had to point it out to me that it is almost certainly just that, but it remains hard to believe. The uncertainty is still there and my mind likes to think I won't get better.

It's not really a surprise though because 1. what we are going through is incredibly challenging and 2. we have been going through it for a while. Nobody here would expect this injury to be so hard and painful, let alone take so long. So when I feel bad and my mind starts overthinking and overanalysing again, I keep repeating to myself that this must be some kind of protracted injury and that I will recover in time. Then, I try to divert my attention somewhere else. As Chippy and others have said, learning to radically accept and willfully tolerate things, is a skill we must learn and apply. It's so difficult though and I still struggle with it.

in regards to sleep, I can tell you that I also had difficulties with it for about 6-7 months. This began a few weeks before starting paroxetine and got worse when I got on paroxetine. The first 3-4 months on it, I barely slept. Hypnic jerks would jolt me awake right before I fell asleep. Then, after I had fallen asleep, I'd wake up after 2-3 hours, not able to fall asleep again and would stay awake for several hours. My sleep anxiety was high and I got very frustrated. I also experienced excessive night sweats from the med which was SO annoying 😅

3 months into my insomnia, I did some research and came across Emma McAdam on youtube. Emma has a dedicated playlist on sleep issues and that's when I started applying CBT and the concept of acceptance. Over a period of 3-4 months, my sleep recovered. I was able to fall asleep again, sleep through the night and get about 7 hours of sleep.

Nowadays, my sleep is fine for the most part but not great YET. I still have some nights where I have trouble falling asleep or where I wake up once. Like Chippy, my sleep doesn't feel particularly restful at this time.

Here's the link to the playlist if you're interested: https://youtube.com/playlist?list=PLiUrrIiqidTWdplSnedICFAMlMN-8ikae&si=Qq0W6osVBvqLjJRn

Wishing you improvement ❤️

Edited August 22Aug 22 by Niels91

I feel like I am in this strange, almost trance-like state. Then anxiety comes over me like a wave through my whole body. It almost takes my breath away, different parts of my body start trembling or twitching, and at the same time my body tenses and contracts. It feels extremely unnatural.

This isn't like ordinary anxiety to me. It isn't like hearing something bad or becoming frightened and then feeling anxious. This physically comes over me in waves and I am terrified when it happens.

I have experienced this kind of feeling before only while taking or stopping some of the medications. I can't even remember which ones anymore.

I am very scared because during this past week I feel like something has been progressively happening to me. Yes, I absolutely understand that my fear and constant thoughts about what is happening are now contributing to the anxiety too. But please believe me when I say that it doesn't feel like this is only anxiety about not sleeping.

Please keep writing to me and sharing your experiences. ❤️ I need to believe that there is a way out of this. Surely someone has experienced something this severe and still came through it.

I know you cannot take the anxiety away or sleep for me. But hearing from you is genuinely helping me stay connected to the world around me and maintain some ability to look forward rather than only being trapped inside what I am feeling right now.

I really don't want to take any more medication, and given my history I am afraid that going down that road again could make things worse. But at the same time I am frightened about what happens if this doesn't resolve.

I am also scared of seeking help here in Latvia. I am afraid that if I honestly describe how bad I feel, I will be sent to hospital, where the answer may be benzodiazepines or antipsychotics. Considering my previous reactions to those medications, and the fact that I already feel as though I am losing my mind, that possibility frightens me even more.

Please keep writing to me. Share your own experiences, experiences you have seen in others, anything you think might help. I know I probably sound chaotic and extremely anxious right now. I am sorry. I am simply struggling to cope with how intense this has become.

I keep repeating one thing to myself: this has to be a wave.

If I were progressively becoming seriously ill, how could I have had such a long and genuinely good period immediately before this?

I don't understand why a wave could happen this late or why it could possibly be this severe. That is why I keep asking the same questions again and again.

But right now I am trying to hold onto the possibility that this is a wave and that it can pass. That is the hope I have at the moment.

And please believe me, I am very aware that I am an anxious person. I know that about myself. But I also know what my normal anxiety feels like, including its physical symptoms. Usually it fluctuates. It increases, decreases, sometimes disappears.

This feels different. The anxiety is constantly there in the background and tends to build. And importantly, even before the first really sleepless night, there had already been several days when I was waking earlier with anxiety, waking more frequently, etc. I wasn’t psychologically worried about it at the time because smaller deteriorations like this had happened before.

Now the physical feeling reminds me of what I experienced during one of the medication changes, either stopping olanzapine or paroxetine without a gradual taper. I can’t remember exactly which anymore. It feels as though my whole body is filled with anxiety, almost being squeezed and tightened from the inside. As it builds, I become frightened that I won’t be able to tolerate it.

I also remembered having a similarly unbearable reaction when my paroxetine dose was increased. It became so severe that my doctor immediately prescribed pregabalin, which then created further problems for me later.

My husband is with me and knows how bad I feel. I have told him that I don’t want medication or to go to hospital, but honestly I don’t know what to do right now.

Has anyone experienced this kind of constant, intensely physical anxiety during withdrawal or a wave, rather than ordinary psychological anxiety?

And has anyone in a similarly sensitive state found anything very mild or natural helpful, for example valerian? I am frightened of experimenting with anything after my previous reactions, so I would especially appreciate experiences from people with similar medication sensitivity.

45 minutes ago, HopeOfHealing said:

Has anyone experienced this kind of constant, intensely physical anxiety during withdrawal or a wave, rather than ordinary psychological anxiety?

Yes, absolutely. I have had days where my entire torso felt like it was being squeezed with anxiety to the point where I couldn't eat and nothing would relieve it. From what I have seen, this kind of physical anxiety is an incredibly normal withdrawal symptom.

46 minutes ago, HopeOfHealing said:

My husband is with me and knows how bad I feel. I have told him that I don’t want medication or to go to hospital, but honestly I don’t know what to do right now.

This is a wave. I know it is awful, but you will get through it. I think it would be very unwise to go the hospital or try any other medications -- as you've said, you reacted poorly to these in the past and it is what led you here.

1 hour ago, SarahMc said:

Yes, absolutely. I have had days where my entire torso felt like it was being squeezed with anxiety to the point where I couldn't eat and nothing would relieve it. From what I have seen, this kind of physical anxiety is an incredibly normal withdrawal symptom.

That is exactly how it feels. Barely can eat anything and that feeling if being squeezed. But can this really be so far out? ChatGPT says yes, but it is hard to believe still. Just seems so weird.

It quoted:

• Claudius: At 18 months off, he described being in one of his worst waves, almost unable to function and considering going back on medication. Around 20 months, he then had his first major window and later reported being much closer to recovered.

• DaBro: Reported major debilitating waves at 12, 15 and 18 months, each lasting about five weeks. Interestingly, the symptoms differed between waves, while his windows were becoming better.

• persistente: At 20 months off everything, wrote that she felt like she was “losing my mind” and questioned whether it could possibly still be withdrawal. Her history included sertraline, mirtazapine, insomnia and waves/windows.

• Alexander: At 18 months off Paxil, described hitting a prolonged wave and not sleeping properly for weeks.

• Winner51: Had periods of total insomnia, including nights with less than an hour of sleep, during mirtazapine withdrawal. By 21 months, he reported sleeping like he had before mirtazapine.

• DaBro’s recovery story: His worst wave occurred around 15 months, lasted roughly 10 weeks, and insomnia remained part of the picture. Improvement became clearer around 18 months, he returned to work at two years, and later reported good sleep.

• GirlfromD: At 12 months off, she described a very bad wave with inability to function, intense anxiety and heart palpitations. At 18 months she reported improvement.

• wanttosurvive: Reported another wave after 20 months off medication, with increasingly long intervals between waves.

28 minutes ago, HopeOfHealing said:

That is exactly how it feels. Barely can eat anything and that feeling if being squeezed. But can this really be so far out? ChatGPT says yes, but it is hard to believe still. Just seems so weird.

It quoted:

• Claudius: At 18 months off, he described being in one of his worst waves, almost unable to function and considering going back on medication. Around 20 months, he then had his first major window and later reported being much closer to recovered.

• DaBro: Reported major debilitating waves at 12, 15 and 18 months, each lasting about five weeks. Interestingly, the symptoms differed between waves, while his windows were becoming better.

• persistente: At 20 months off everything, wrote that she felt like she was “losing my mind” and questioned whether it could possibly still be withdrawal. Her history included sertraline, mirtazapine, insomnia and waves/windows.

• Alexander: At 18 months off Paxil, described hitting a prolonged wave and not sleeping properly for weeks.

• Winner51: Had periods of total insomnia, including nights with less than an hour of sleep, during mirtazapine withdrawal. By 21 months, he reported sleeping like he had before mirtazapine.

• DaBro’s recovery story: His worst wave occurred around 15 months, lasted roughly 10 weeks, and insomnia remained part of the picture. Improvement became clearer around 18 months, he returned to work at two years, and later reported good sleep.

• GirlfromD: At 12 months off, she described a very bad wave with inability to function, intense anxiety and heart palpitations. At 18 months she reported improvement.

• wanttosurvive: Reported another wave after 20 months off medication, with increasingly long intervals between waves.

@HopeOfHealing . It is definitely hard, but we need to believe and rely in other people's recovery. Yo are doing great and I'm on a wave again with old symptoms. The psychological symptoms are the worst and the thoughts or OCD I thought it was gone came back at my 21 months journey.

But if you think about it, it is a little less intense than when you started the journey. It still terrible because we want to feel better, but the body takes time. I believe that after few months, the body goes back and revisit those old areas to do a deeper healing. It is hard and we should never be on this situation, but we most continue trusting the process. think about a diamond. It needs to go through a process of intense fire to become a shiny valuable item. The same goes with our body. We have imprinted so many things that now it's overloaded and it's trying to go back to factory or even better. So, thing about the great person you will come to appoint that you will no longer suffer from even small things in life. You will see live differently, you will enjoy your husband and children differently, you will see your surroundings differently with love and gratitude.

The journey is painful but the other side will be greater......you are doing an amazing job. Your day will come and the miracle will happen. Patience my friend. God is with you....

Also, it's fine to do a yearly checkup with doctor just to confirm everything is fine. I did mine about two weeks ago and everything is perfect even though I was feeling chest pressure, etc. These symptoms mimic things we don't have...my blood pressure was even better than ever and normal....

Definitely, these medications altered other areas of the body....

Hang in there, you will see a light soon in the name of Jesus...

@HopeOfHealing my dear friend, what your experiencing is absolutely a wave, and yes they can come at this far out, my 18 to 20 month were changelingand could not believe it was a wave either but just remind yourself that this is more healing your body is doing. It wasn't strong for me the entirety of the duration of my wave and had a few breaks, slighty in between. But none the less it was uncomfortable. I just had to continue to tell myself, the bigger the wave the bigger the window. This is when your body is doing the most healing. Stay strong during this period and ask God for his guidance, he has carried me through my toughest times, he will not let you faulter. God is paving a way of strength that will will be unbreakable. And yes, it's o.k. to shed a few tears, I call it God healing hands cleansing my sole. Hang on to the windows my friend because they will emerge gloriously. Hugs for now, xxx Bernadette ❤️

Thank you @Raymond and @Bernadette ❤️
I am also a strong believer in God and his teaching and I do trust in his guidance and the fact that he will guide me through these tough times. I believe it! 🙏

I just need to hear some reassurance. For me the size of the wave that comes so late feels the hardest to grasp. Sometimes it is hard to judge but it does feel like the worst I have felt since stopping and so far out. So strange. So unbelievable. I understand healing is not linear but still. It is so difficult to believe, which makes it so scary, which increases the anxiety, which sends me on a loop. Just a terrifying experience that scares me to my core!

Thank you to every single person who keeps writing to me. Please continue to stay with me and share your experiences. You probably cannot imagine how much it means to me right now. ❤️

Even if I repeat myself. Even if you repeat what you have already told me. If you genuinely believe this is a wave and that it will pass, please keep telling me that. Right now I don't have another explanation or anything else to hold onto.

I understand what many of you have said about taking this one step at a time. Right now I literally feel like I am living from minute to minute. I write here, then come back and read your replies, just so that for a little while I don't feel alone in this.

Many of you have mentioned God and trusting Him. I believe in God, and I believe He brought me to this forum so I could find strength here. And also hope that this really can be a wave. If I didn't know that this possibility existed, I honestly don't know if I would still be holding on.

Everything has progressed so quickly within one week. It started with waking early with anxiety. Then came a whole week of sleeping only a few hours each night. During the days this intense physical anxiety has also grown stronger. It comes over me like a huge ocean wave that completely covers me and I feel powerless against it.

My whole body seems to tighten and contract. Even my face feels tense, especially my neck. I get strange pains in different parts of my back and muscles.

Has anyone experienced this during a wave? The feeling that your whole body is tightening or contracting, with muscle pain and this overwhelming physical anxiety?

I keep telling myself: this isn't my normal anxiety. This is a wave. It will pass. It has to be temporary. Other people have gone through this and come out the other side.

But it is so incredibly intense. If someone had asked me only a few weeks ago whether it was possible to feel this bad, I wouldn't have been able to imagine it.

And believe me, I have already been through a lot.

13 minutes ago, HopeOfHealing said:

During the days this intense physical anxiety has also grown stronger. It comes over me like a huge ocean wave that completely covers me and I feel powerless against it.

My whole body seems to tighten and contract. Even my face feels tense, especially my neck. I get strange pains in different parts of my back and muscles.

I'm currently experiencing this...it's all a wave and headache too

My dear friend @HopeOfHealing this is NOT normal anxiety this is a wave your experiencing, hold on my friend as this can get bumpy along the way, you will probably experience times where it's more intense and others where it lightens up a bit for some relief, but yes it is a wave and you will get through this. I'll say a prayer tonight for you. It's part of this awful process that none of us like but the biggest waves is your body repairing itself. Much love Bernadette ❤️ I did get my refrigerator pickles done and now just has to sit for 2 hours in ice before I drain them and then I can put them in the Bryn sauce to set for 48 hours. If I could sit with you to comfort you I would. You are truly in my thoughts at this moment.

@HopeOfHealing I hope I can offer some reassurance. I don’t want to say something that makes it worse for you. Others have reassured you that healing is possible. I also want to say, yes, this is a temporary state if you allow it to be. Acceptance and mindfulness will go a long way.

That’s fantastic that you are walking. I find this to be one of the most important things I do during my taper. I aim for between 7500-10000 steps every single day without fail. That’s a minimum of a 2 mile walk and can be done in an hour. I always walk outside.

I also follow TheAnxiousTruth on YouTube. He went through psych med withdrawal and his channel focuses on acceptance and mindfulness. He’s now a therapist. I find him very helpful, especially since he did a too fast med taper and had severe symptoms.

You aren’t alone :) You will survive. The silver lining with severe symptoms is you know what the worst, hot garbage day feels like and have survived it. That makes you strong.

@Bernadette thank you for sharing and also for letting me know of the day to day. This is calming to remember that there is normal life outside of this.

I am wondering, can such severe sleep deprivation combined with a wave actually be dangerous?

I feel so physically unwell. My head, eyes and whole body hurt and feel stiff and strange. I feel deeply sick in my body.

@HopeOfHealing our bodies manage to get the sleep it needs to recover even if it doesn't seem like it, there were many nights I felt exhausted but as you can see through my posts I have made it to 22 months from zero. I still experience broken sleep, but that usually happens when a ripple "is what I call my waves now " wants to show it's ugly face, but they are becoming shorter and less intense. Of course there never comfortable but I try not to let my mind ruminate and just remind myself it's just another annoying ripple and it will pass. Hugs for now xxxx Bernadette

Good morning. Trying to focus on something positive, Garmin shows around 5 hours of sleep last night.

I still have this strange inner restlessness when trying to sleep, something that seems to pull or jerk at my body and makes it difficult to lie still (akathisia?!). But there are moments when I manage to slip into sleep. Last night it seems to have happened around three times.

The strange thing is that I don’t really experience those periods as sleep. I simply realise afterwards that for some time I wasn’t moving around or thinking about everything. I do feel somewhat better this morning than I did yesterday, so I am trying to recognise that as something positive. But I still don’t have the feeling that I was properly “offline”, relaxed and deeply asleep.

I am trying to notice every small positive thing while more than anything I am waiting for one genuinely good, restorative night.

During the hardest moments at night, thoughts come like, “Just take something, anything, one tablet, just to switch off.” But then I remind myself how much I have already been through and survived. I don’t want to give up now if there is still a way through this without going down that road again.

Do you still think this can be a wave and that it will pass?

Has anyone had more than a week of sleep this disturbed? So fragmented and strange that even though you technically slept for several hours, you didn’t really feel like you had been “switched off” at all?

I am genuinely grateful that I am getting some sleep because I know that matters. But during the day I still don’t feel relaxed or restored. I feel constantly wound up, like a stretched string, with this restless feeling inside my head and body.

I want a good, peaceful, restorative night of sleep so badly.

Hey @HopeOfHealing

Glad you got some better sleep last night.

The Jerks are common I have had these a lot, they have mostly passed for me.

All of what you have described I have had or have to some extent 2.5 years later with zero nights of normal sleep since this all began. Sadly sleep can be one of the last things to recover and it is common for things to get better and then get worse some months or even years later.

Acceptance, time, this isn't forever. x

16 minutes ago, HopeOfHealing said:

The strange thing is that I don’t really experience those periods as sleep. I simply realise afterwards that for some time I wasn’t moving around or thinking about everything.

This is called paradoxical insomnia, you think you spent the whole night tossing and turning but there were actually periods of sleep within it that can be confirmed by a sleep tracker or someone who saw you asleep. This is very common in WD.

Somehow I just feel the need to write honestly about how I really feel.

In the middle of this enormous struggle, I am seeing many things about my life differently. I see where I have wasted time and energy on things that really didn’t matter. And even more, I see the value of what I have been given, especially my family. They are worth fighting for until the very end.

But underneath all of this there is still a huge fear: what if I can’t endure this? What if nothing changes? It is difficult not to think about it when this affects the very foundation of my life.

Have you had moments, or longer periods of a week or more, when things were so difficult physically and emotionally that you genuinely wondered whether you could endure it?

I consider myself quite a strong person, but this experience has been the hardest thing I have ever gone through. I never imagined that this kind of existential suffering was even possible. That is the best way I can describe it. My body and mind create sensations that feel impossible to tolerate for a long time.

I keep reminding myself of what you have told me: the only way out is through.

I pray to God and rely on Him when my own strength feels like it is running out. And I keep trying to hold onto the thought that this is withdrawal and that this state can change.

I appreciate every comment and every bit of support more than I can say.

I hope there will come a time when I can be here helping someone else through this. And I hope there will come a time when I can begin a new life with a completely different understanding of what truly has value.