You right, @Pokey449, we don't have to apply everything the AI says. Take only this information for asking Dr Horowitz.

Svetla

I asked AI if the doses I’m at will cause central apnea or complex apnea ( neither are good) and it said NO. But again, grain of salt. But I will ask Horowitz.

@Pokey449 for the most part I have found chat gpt very helpful with lots of things in life. I think it is funny when people say don't trust it etc, as like all research tools you must not rely on any one source, don't treat it like a god it is just a tool to help gather information to help you make some informed choices. It often misses things and I have to point out oversights lol, but unlike a human it is always very receptive to my corrections and thanks me. 🤣

@Chippy this morning I’m Starting to believe that I’m going to die from all this WD hell, if that is in fact what’s causing me to feel so bad. I continue to wonder about some unknown idiosyncratic reaction happening or ADR between the doxspin & mirtazapine…….. I had a horrible night again last night. Multiple awakenings with repeating sickening whole body spasms is the only way I can describe them causing me to draw myself up into a ball in extreme discomfort + being nauseous. It would release its grip on me and hit me again, release and hit me again. I deep breathed to ease the miserable residual feeling in my body. It would eventually subside and I’d fall back asleep only to be jolted awake with the same hellish thing. Now that I’m up & had some breakfast I’m feeling exhausted. I feel like I’m overall slipping into a hole, that I’m slowly deteriorating physically & mentally. I can’t keep this up.

Since Dr Horowitz told me to updose from 29mg (which I’d been at since January) I’ve been at 29.6mg now for 155 days. A short while back I thought I was starting to stabilize. But I don’t believe that’s the case. My daily notes show I’m not improving. I’m feeling very vulnerable & scared that I’ll never be well again. I’m writing this post from my recliner. I don’t think I’ll get very far from it today. And I’m here alone. It’s all to much!!!!

Pokey

Hi @Pokey449 I think this is the first time ive commented on your thread but im Sarah and im so sorry to hear you're having such a bad time. If you're living all alone and feel lonely or scared im just a message away at anytime. If I dont reply I'll be asleep as we're probably in different time zones.

You mentioned you felt like you were close to stablising not too long ago. That's a good sign. From research ive done thats your CNS calibrating again. If it can get there once it'll do it again. Unfortunately its just time and its on its own terms. We kinda just have to accept it and let it do its thing. Easier said than done, believe me I know.

Try and stay distracted as much as you can, focus on things you love. Its so hard. Harder than any human should experience. But you'll do it. You'll get there.

Sending love x

@cherrysquid i don’t know if I can make it. I’m feeling horrible. Feel like I’d just as soon go to sleep and not wake up. I think about ways to do that 😢 I’m struggling with this WD and struggling with gettibg decent nights rest with cpap which I hate. It’s awful too. Today I just had to go back to bed I feel so bad. But laying in bed & can’t sleep is pure miserable hell. Scared being alone too. It’s such a lost empty feeling. Maybe I’ll feel better after my tapering dose at noon. But that’s 3 long hours away. Just trying to hold on

12 minutes ago, Pokey449 said:

@cherrysquid i don’t know if I can make it. I’m feeling horrible. Feel like I’d just as soon go to sleep and not wake up. I think about ways to do that 😢 I’m struggling with this WD and struggling with gettibg decent nights rest with cpap which I hate. It’s awful too. Today I just had to go back to bed I feel so bad. But laying in bed & can’t sleep is pure miserable hell. Scared being alone too. It’s such a lost empty feeling. Maybe I’ll feel better after my tapering dose at noon. But that’s 3 long hours away. Just trying to hold on

I know the feeling i may have only been in this hell for a few months but im already well acquainted with it. I question if I can make it too. Convinced im going to d*e. We all here have or had times like this its bottom of the barrel suffering. But you deserve to be happy and, well so you'll get there and enjoy what life has to offer you. Just have to continue climbing this mountain first. Because you will heal we just dont know when. You're not alone in this theres thousands of us maybe more and although we're not physically with you, we are in heart and mind. And you've got this, pokey. Better days will come. The hopelessness is a symptom, a trick. You got this.

@cherrysquid Thank you Sarah. Part of the loneliness is loved ones and friends really can’t comprehend how miserable it is. They empathize but there’s no way they can know. I really need some exercise but I just can’t do it today.

I’ll check out your posts a little later. Thanks for checking on me. Really appreciate it.

4 minutes ago, Pokey449 said:

@cherrysquid Thank you Sarah. Part of the loneliness is loved ones and friends really can’t comprehend how miserable it is. They empathize but there’s no way they can know. I really need some exercise but I just can’t do it today.

I’ll check out your posts a little later. Thanks for checking on me. Really appreciate it.

Honestly anytime. Im here if you need a rant or a vent or just some online company.

@Chippy @cherrysquid @Marina i was just reading some of your posts in Sarah’s thread about acceptance & forgiveness.

I’m in a really tough spot now and have been struggling for some time Lots of WD ups & downs & misery. I really struggle with the acceptance thing. Pain, exhaustion, sleeplessness, nausea, anxiety, fear, regret, Akathisia, depression, SI, loneliness, loss of normalcy are hard things to accept especially when I have a hard time forgiving myself for getting myself into this mess. I think I knew better. I had been on& off ADs two times in the past but I got off both times without much trouble. I was aware of what kindling was. I won’t go into all the thinking and reasons I allowed my doc to put me on a low dose of doxepin when I was already on low dose mirtazapine. I allowed it. I was stupid. I brought this misery on myself. I want to blame my doc but really it’s all due to my stupidity. It’s affected me and my family & friends. Im all alone to deal with this hell. So I’m really having a hard time forgiving myself when I could have just said “NO to my doc, I won’t take it”. But I didn’t and now I’m literally sick 🥲 How do I forgive this??

12 minutes ago, Pokey449 said:

How do I forgive this??

You forgive this cause this is the only way forward, if you are going to carry resentment, you are going to be the one suffering. We move forward, not backwards, we can all make it out and heal, each in their own way.

I used to resent the past for so long and whatever mistakes I did that led to my consequences, I just at some point realized it's pointless, like you cannot change the past, that's why we need to let go of the past, and do what we need to do now, and simply focus on that.

17 minutes ago, Pokey449 said:

@Chippy @cherrysquid @Marina i was just reading some of your posts in Sarah’s thread about acceptance & forgiveness.

I’m in a really tough spot now and have been struggling for some time Lots of WD ups & downs & misery. I really struggle with the acceptance thing. Pain, exhaustion, sleeplessness, nausea, anxiety, fear, regret, Akathisia, depression, SI, loneliness, loss of normalcy are hard things to accept especially when I have a hard time forgiving myself for getting myself into this mess. I think I knew better. I had been on& off ADs two times in the past but I got off both times without much trouble. I was aware of what kindling was. I won’t go into all the thinking and reasons I allowed my doc to put me on a low dose of doxepin when I was already on low dose mirtazapine. I allowed it. I was stupid. I brought this misery on myself. I want to blame my doc but really it’s all due to my stupidity. It’s affected me and my family & friends. Im all alone to deal with this hell. So I’m really having a hard time forgiving myself when I could have just said “NO to my doc, I won’t take it”. But I didn’t and now I’m literally sick 🥲 How do I forgive this??

My dad blamed me which hurt and made it harder to forgive myself. He said I did this to myself because I needed those pills because of issues I have with OCD. It was hard but I forgave him because he doesn't understand. And im also forgiving myself. We think doctors know what's best because we'll theyre supposed to lol.

No one is to blame. Im sure if someone gave you a magic mirror and showed you what was going to happen you wouldn't have done it. But we dont have that magic mirror lol.

Practice some self-love and self-worth. Im going to look into some stuff and I'll see if i can post some helpful things in the resources section. I need to find out more first though.

You're worthy of forgiveness of yourself.

@Lighty @cherrysquid thanks for the advice and kind words. I’ll take them to heart

15 hours ago, Pokey449 said:

@Chippy @cherrysquid @Marina i was just reading some of your posts in Sarah’s thread about acceptance & forgiveness.

I’m in a really tough spot now and have been struggling for some time Lots of WD ups & downs & misery. I really struggle with the acceptance thing. Pain, exhaustion, sleeplessness, nausea, anxiety, fear, regret, Akathisia, depression, SI, loneliness, loss of normalcy are hard things to accept especially when I have a hard time forgiving myself for getting myself into this mess. I think I knew better. I had been on& off ADs two times in the past but I got off both times without much trouble. I was aware of what kindling was. I won’t go into all the thinking and reasons I allowed my doc to put me on a low dose of doxepin when I was already on low dose mirtazapine. I allowed it. I was stupid. I brought this misery on myself. I want to blame my doc but really it’s all due to my stupidity. It’s affected me and my family & friends. Im all alone to deal with this hell. So I’m really having a hard time forgiving myself when I could have just said “NO to my doc, I won’t take it”. But I didn’t and now I’m literally sick 🥲 How do I forgive this??

Don't get drawn into blame, don't blame the doctor, don't blame yourself. It just causes anger. Anger is not helpful. You need to aim for peace. It is in you to do this. Peace comes from acceptance, but it starts with just repeatedly bringing the mind back to the moment. It will naturally wander, don't get angry when it does. This is just an opportunity to accept that it is happening and put it back into the present. Distraction is very key, get into a box set, learn something new on youtube. Take on a mini project to make something. Anything to keep yourself doing something positive and keep your mind in the moment.

Making errors is part of life mate! Don't be mad at yourself, we have all done them. Man I wish I never too Mirt! But being mad at myself won't help matters.

Yes I don’t disagree with your words of wisdom @Chippy it’s just hard at times to not blame myself for knowing better and still doing yhe dumb thing.

I do still hold some blame against my 2 psych doctors. Doxepin is generally contraindicated for people who are older than 65, have a history of AFib and sleep apnea. I fit all three. And throwing it in on top of mirtazapine I don’t think was wise medical advice. But then I turn around and ask myself why didn’t I research this more beforehand and learn all this so I could have said no.

But continuing to blame them or myself solves nothing. It is what it is. All I can do is deal with it best I can. At least I slept better last night. I’m ok today. But tonight is another night.

I really think what’s going on is not all WD and not all sleep apnea & pain issues. I think it’s a collage of all 3 all affecting each other. One or the other being more problematic from one night to the next. A hard nut to crack/problem to solve

12 minutes ago, Pokey449 said:

But continuing to blame them or myself solves nothing. It is what it is. All I can do is deal with it best I can.

sounds like progress !

12 minutes ago, Pokey449 said:

I really think what’s going on is not all WD and not all sleep apnea & pain issues. I think it’s a collage of all 3 all affecting each other. One or the other being more problematic from one night to the next. A hard nut to crack/problem to solve

that's also my experience with the nervous system destabilization interacting with my original physical condition and also the other way around.

17 hours ago, Pokey449 said:

At least I slept better last night. I’m ok today.

Love this. I think you are very slowly showing progress @Pokey449

Well I don’t feel like Im making much progress. Awoke again last night in the wee hours. I did not look at what time it was as it will only make me feel worse. From my perspective I’m stuck in the same repeating cycle of broken sleep, pain and all the other physical symptoms, along with bad cpap therapy. The WD is negatively affect my pap therapy. & vise versa. Get up , Drag through the day and repeat it all over again. I’m sick n tired of it and I feel like I’m slowly wilting like a rose in a vase. Turning brown and eventually the leaves and petals all fall off and there’s nothing left but a bare stem

Hi @Chippy I had another email/voice message appointment today with Horowitz. It was supposed to be Wednesday but he moved me up due to his schedule. I shared in my notes that I sent to him that I’m just not doing well. That I continue to have many miserable nights and days. That I’m worried about my respiratory drive being affected and my BIPAP therapy is compromised. That I seem to be slipping deeper and deeper into profound fatigue and dysfunction. That I have many days I can’t hardly get out of the house. That im getting weaker & I’m afraid of dying. That I’m stuck in a miserable daily cycle.

He didn’t have any silver bullets for me. He seemed to not know what to say. He noted I’d been on these kind of drugs for a long time which is true but a disheartening realization that I may be permanently broken by said drugs…..though he didn’t say that.

The only hint of a possible action that I might try that “might” hel p is to again think about moving my total dose to later in the day. Since I keep waking in the wee hours in distress he seemed to imply maybe that might be worth one last try. He wasn’t clear on that however. I sent him a quick email asking if that’s what in fact he was suggesting. I’ll let you know what he says.

I’m worried that I may be beyond healing, that I went to far to long or to many times. That I may be permanently & terminally broken 😩

@Pokey449, what Dr H. said about a probabl interaction between the both drugs?

Svetla

Edited July 27Jul 27 by skamen

He didn’t think I am suffering from an Adverse Drug Reaction between the 2. Said if that’s going to happen it should have presented when I was a the higher doses of the doxepin. He said I was likely the victim of kindling & protracted WD.

10 hours ago, Pokey449 said:

He didn’t have any silver bullets for me. He seemed to not know what to say. He noted I’d been on these kind of drugs for a long time which is true but a disheartening realization that I may be permanently broken by said drugs…..though he didn’t say that.

No he didn't mean this. He was just saying long term use of the drugs plays into your situation. No one is broken without hope mate.

10 hours ago, Pokey449 said:

’m worried that I may be beyond healing, that I went to far to long or to many times. That I may be permanently & terminally broken 😩

Not at all! The body is good at healing, it is often slow but you have had some better nights and days too. These are signs of things going in the right direction.

10 hours ago, Pokey449 said:

The only hint of a possible action that I might try that “might” hel p is to again think about moving my total dose to later in the day. Since I keep waking in the wee hours in distress he seemed to imply maybe that might be worth one last try. He wasn’t clear on that however. I sent him a quick email asking if that’s what in fact he was suggesting. I’ll let you know what he says.

I think this is all clutching at straws personally and just trying things to 'fix' youself, but for most it just destablises. I would hold where you mate. I know the temptation to try things is strong, but how has that gone so far?

Hope you get more rest tonight my friend.

Hi @Chippy I’ve been awake most of the night. Fell asleep last night with my bed lamp still on. I was exhausted. I Woke briefly to turn it off and went back to sleep only to awaken about 2am. That was it for the night. Awoke very restless and agitated. Nauseous and in pain. Couldn’t lay still. Got up and went to my recliner. Did some deep breathing. Went back to bed. Tossed and turned, couldn’t lay still. Restless, scared, exhausted, thinking in time I’m surely going to die from all of this. Finally got up at 445, couldn’t lay there any longer. Feel like I’ve been gradually getting worse and more restless & feeling unwell by the day. Sleep has been getting worse for sure.

Yesterday Horowitz was neither positive or negative, just matter of fact. I took it that his final analysis was that I’m in protracted WD. He didn’t think I’m having an ADR but I’m not 100% convinced of that. As He did say theres a lot about these drugs that’s not known. I shared with him in my notes to him beforehand that im concerned that im going to wear out from all the lack of sleep & the wear & tear on my body. That something has to give & I’ll die from a secondary cause, ex. exhaustion, heart attack, etc. And I have other scary thoughts of how to make all this misery to stop 😩🥲

It’s going to be another long day just surviving. I don’t feel like going anywhere or doing anything. It’s been to bloody hot tonight take a walk. We’re under a heat advisory.

This is no way to live.

12 minutes ago, Pokey449 said:

Hi @Chippy I’ve been awake most of the night. Fell asleep last night with my bed lamp still on. I was exhausted. I Woke briefly to turn it off and went back to sleep only to awaken about 2am. That was it for the night. Awoke very restless and agitated. Nauseous and in pain. Couldn’t lay still. Got up and went to my recliner. Did some deep breathing. Went back to bed. Tossed and turned, couldn’t lay still. Restless, scared, exhausted, thinking in time I’m surely going to die from all of this. Finally got up at 445, couldn’t lay there any longer. Feel like I’ve been gradually getting worse and more restless & feeling unwell by the day. Sleep has been getting worse for sure.

Yesterday Horowitz was neither positive or negative, just matter of fact. I took it that his final analysis was that I’m in protracted WD. He didn’t think I’m having an ADR but I’m not 100% convinced of that. As He did say theres a lot about these drugs that’s not known. I shared with him in my notes to him beforehand that im concerned that im going to wear out from all the lack of sleep & the wear & tear on my body. That something has to give & I’ll die from a secondary cause, ex. exhaustion, heart attack, etc. And I have other scary thoughts of how to make all this misery to stop 😩🥲

It’s going to be another long day just surviving. I don’t feel like going anywhere or doing anything. It’s been to bloody hot tonight take a walk. We’re under a heat advisory.

This is no way to live.

Hang in there, Pokey ❤️

You have years of life ahead of you - it’s just a really tough patch right now!

Some of us have symptoms that are worse in the night and some have symptoms that are worse at certain times a day.

I’m one to tell you that a lot of changes just makes things worse. I’ve made little tiny changes here and there and I’ve gotten worse every time, so worried that I was having an adverse reaction…

Every time I’ve made a change anything that could’ve been an “adverse reaction”just gets worse.

I’ve had to learn a very hard lesson and now I have to just hold and hold and hold.

Just focus on the windows you’ve had. Those really are the proof that your nervous system can settle with enough time. 🩵

@Pokey449, I am in the same misery like you, exactly what you describe. As Dr Horowitz has sad, we are in kindling + protracted whidrawal, I think.

Svetla