@skamen Hi Svetla. I don’t know how to deal with the way I’m feeling today. I think it’s the most miserable I’ve ever felt in my life. I continue to fear it’s more ominous than protracted WD. The mirtazapine & doxepin is not a common combination. So I think it’s possible that even Horowitz might not know what could be going on. Nobody might know!! He said there’s a lot about these drugs that’s unknown. In looking back at my daily notes it seems I’ve gradually slowly been getting a little worse over time. I’m feeling quite ill and I’m really scared!!!

34 minutes ago, Pokey449 said:

@skamen Hi Svetla. I don’t know how to deal with the way I’m feeling today. I think it’s the most miserable I’ve ever felt in my life. I continue to fear it’s more ominous than protracted WD. The mirtazapine & doxepin is not a common combination. So I think it’s possible that even Horowitz might not know what could be going on. Nobody might know!! He said there’s a lot about these drugs that’s unknown. In looking back at my daily notes it seems I’ve gradually slowly been getting a little worse over time. I’m feeling quite ill and I’m really scared!!!

Its understandable you're scared thats so valid given everything thats happening.

Id try to limit my note checking to a certain amount of time at day as this fuels symptoms and makes us feel worse.

Thinking of you ❤️

@Pokey449, I don't take anything, and I experience the same misery as you: body pain, doom, agony, terror, nausea, fatigue, insomnia, hellish feeling of dying... Also, as Dr Horowitz has said, you haven't had this horror when you were in higher doses of the both poisons. For me logically there are kindling + WD. We are in big suffering, we must hold on, we don't have other option.

Svetla

12 minutes ago, skamen said:

@Pokey449, I don't take anything, and I experience the same misery as you: body pain, doom, agony, terror, nausea, fatigue, insomnia, hellish feeling of dying... Also, as Dr Horowitz has said, you haven't had this horror when you were in higher doses of the both poisons. For me logically there are kindling + WD. We are in big suffering, we must hold on, we don't have other option.

Svetla

Very good points!

@skamen i keep thinking about one final scary other option. It’s not a good one but it keeps raising its ugly head. I just got back from a short walk. Trying to divert my mind a body a bit. Hoping for some respite for both of us.

@cherrysquid thsnks. Yes my “checking behavior” can make my anxiety worse. I’m looking for some examples of reassurance. Classic OCD.

22 minutes ago, Pokey449 said:

@cherrysquid thsnks. Yes my “checking behavior” can make my anxiety worse. I’m looking for some examples of reassurance. Classic OCD.

@Pokey449 . While on this journey and in the beginning of terrible symptoms, I stopped checking for my symptoms. It can make things worst. Unfortunately, it is also true that WD causes all of it to check for our symptoms. The journey is terrible. Try to focus in something else, so you can manage everything better....

Hang in there......keep pushing forward. We all feel like we are dying, but our body is actually trying to make us stronger......slow process unfortunately.....

God almighty I feel awful. I don’t think I’ve ever felt this rotten before in my 77 years. Yes I’ve moved my dose around to taking it different times, tried splitting it into two doses taking them a few hours apart. Then returned to a single dose. Horowitz told me that moving doses around like that doesn’t bother most people much. Guess I’m an exception Horowitz says I’m in protracted WD. But I’ve been at 29 or 29.5mg since February. Seems like I should be stable by now, but I’m not and I’ve gotten much worse the last 2-3 days. I hope he’s right as time should cure WD. But Something just doesn’t seem right & I continue to worry about it all being an ADR which would be a disaster. 🤞🤞🤞I smooth out soon.

It is the WD, @Pokey449, and the hypersensitized CNS. I have been without any doses changes since March because I stopped everything, but the stability doesn't come... You are not alone, Pokey.

Svetla

13 minutes ago, Pokey449 said:

worry about it all being an ADR which would be a disaste

It's normal during the worst months to be this way...you have to remember that it's not you, but your brain adjusting....it's hard to believe during terrible pain, but TRUST the process. You will get there.

21 hours 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.

Hey @Pokey449

I am so sorry to read of your bad night. Such a common theme in WD unfortunately. If we could sleep properly I truly believe recovery would be easier and quicker!

Trust your body my friend, it won't give up on you, just feels awful in the moment I know. These drugs really mess with our sleep architecture I know this only too well.

Better a coming mate

thanks @Chippy I wish I had as much faith as you do. I’m not 100% convinced that everything I’m experiencing is all WD & that it will all go away in time. I still think there’s some amount of a ADR going on. The two meds are a bad combination. While it may not kill me it’s sure as hell very hard on my 77 y/o body. But I guess I need to take some solace in the fact I’m doing better than some other souls here, but it really puts a negative dark cloud over my life

@Chippy i went back and skimmed through many of my postings on SA and here as well. The theme & pattern of my posts is much the same day after day after day: terrible sleep, a cluster of symptoms night after night. Waking in pain and feeling crappy. I had a number of posts where I felt ok during the day and terrible at night. How to account for that???? Fast forward to now. I’m still having awful sxs at night but I’m now very tired and not feeling well during the day as well which is different from then. I’ve been at a dose of 29-29.6mg since January. Yes I’ve split & moved doses around. I’ve been at my dose at noon now for over a month. I continue to believe there’s more to my picture than just WD. I guess more time will either prove me wrong or confirm my worry.

16 hours ago, Pokey449 said:

@Chippy i went back and skimmed through many of my postings on SA and here as well. The theme & pattern of my posts is much the same day after day after day: terrible sleep, a cluster of symptoms night after night. Waking in pain and feeling crappy. I had a number of posts where I felt ok during the day and terrible at night. How to account for that???? Fast forward to now. I’m still having awful sxs at night but I’m now very tired and not feeling well during the day as well which is different from then. I’ve been at a dose of 29-29.6mg since January. Yes I’ve split & moved doses around. I’ve been at my dose at noon now for over a month. I continue to believe there’s more to my picture than just WD. I guess more time will either prove me wrong or confirm my worry.

I don't think it is helpful to look back at how you were before if I am honest, you can only really look at how you are since the nervous system was last disrupted by a change. It is why I am not a huge fan of little fixes, I can't see that they help most of the time and they reset the clock in many ways as the system has been further disrupted. I do remember you have had day time symptoms before now and they passed. Windows and waves. 1 month proper hold is not a long time in WD terms.

I wish we knew more about how long it takes to heal and stablise. All we can do is make the choice to hold the line and trust our nervous systems to do the work needed to make all this right. As ever if there are other health issues at play don't ignore them and have them checked.

Hoping you get a better rest tonight my friend.

Morning (here anyway) @Chippy from the central US. Thanks for your last message. I understand what you mean by looking back in time at how I was doing mighT not be helpful The only reason I did is because HOROWITZ asked me if I could see any patterns emerge from my symptoms. In reviewing my past posts the only pattern I could see was things were kind of all over the place. No clear cut pattern to my symptomology. But now more recently what’s going on seems to be more somewhat clear and repetitive. I think I’ve become able to determine the cause of what’s happening to cause the after affects/symptoms that spill over into my night & day. For example a slipped disc being the cause of back pain & disrupted sleep ( symptoms)

My symptoms are: waking multiple times in the night with pain, nausea, groggy with headache, slightly SOB, overall body discomfort. These sxs dissolve after I get up. The cause: I’m increasingly convinced my respiration is being affected. I think my respiration center in my brain is being affected, that I’m having some central apneas, my brain is literally stopping me from breathing & is why I wake suddenly with the above sxs. But I’ve had multiple sleep studies that have not shown this happening. I think it’s only manifested recently. I need more data to prove or disprove this. I see my sleep doctor next week. Will see what he has to say. That’s about all I know for now. Take care and as always thanks for your caring & help.

@Pokey449 I do hope further sleep studies can help to ease your mind on the subject.

I hope your sleep was better as you didn't mention it. Fingers crossed that is another better night for you.

@Chippy I think I messed up big time. Yesterday I found a mirtazapine tablet on the floor in front of the cabinet where I keep my pill box that has all meds for each day of the week. The only reason I can think of why it was there is I dropped it when I took it out of the pill box for my nightly dose Wednesday night. I always put it and my melatonin in a little bowl by my bed to be taken @ 930pm. It’s a nightly ritual. An alarm on my phone reminds me when to take it. When the alarm goes off I just automatically take it & the melatonin without thinking sometimes. Well I think i was not paying close enough attention Wednesday night and I think I may have missed taking my mirtazapine dose ☹️🥲 which likely explains why I awoke in the wee hours this morning so restless & feeling bad. I couldn’t lay still and had to give up at 530 & get up. That’s the only thing I think of that can explain why that mirtazapine tablet was on the floor. There’s just to many things to keep track of and deal with. It’s hard to keep up when Im so tired & stressed. This was a huge screw up. Now it’s going to delay getting stabilized even longer. Im just completely exhausted with all of this.

Ps. Would it be a good or bad idea to take an extra dose of 1/2 dose “even things out a bit”??!

19 hours ago, Pokey449 said:

@Chippy I think I messed up big time. Yesterday I found a mirtazapine tablet on the floor in front of the cabinet where I keep my pill box that has all meds for each day of the week. The only reason I can think of why it was there is I dropped it when I took it out of the pill box for my nightly dose Wednesday night. I always put it and my melatonin in a little bowl by my bed to be taken @ 930pm. It’s a nightly ritual. An alarm on my phone reminds me when to take it. When the alarm goes off I just automatically take it & the melatonin without thinking sometimes. Well I think i was not paying close enough attention Wednesday night and I think I may have missed taking my mirtazapine dose ☹️🥲 which likely explains why I awoke in the wee hours this morning so restless & feeling bad. I couldn’t lay still and had to give up at 530 & get up. That’s the only thing I think of that can explain why that mirtazapine tablet was on the floor. There’s just to many things to keep track of and deal with. It’s hard to keep up when Im so tired & stressed. This was a huge screw up. Now it’s going to delay getting stabilized even longer. Im just completely exhausted with all of this.

19 hours ago, Pokey449 said:

Ps. Would it be a good or bad idea to take an extra dose of 1/2 dose “even things out a bit”??!

Hey @Pokey449 I am so sorry I missed this I would have responded sooner had I seen it.

Not sure what you did in the end? Have a read of this it gives you some ideas of what you should do should this happen again:

Missed Dose? Took Your Dose Twice? What Now?

@Chippy i ended up not doing anything and took my next dose on schedule. Luckily I got better sleep last night. Where can I find that link you sent me in case I screw up again

I’m coming to the conclusion my sleep troubles are due to a complicated mix of WD, cpap disrupting my sleep and back pain issues. Last night I tried a different cpap mask and slept better in that regard. My back pain didn’t hit me as much. I got more REM and Deep steep last night so feel better today. But still am a long ways from the 7hrs I need to feel rested. I see my sleep doc this coming week to see if he has anything helpful to add to the picture.

20 minutes ago, Pokey449 said:

Where can I find that link you sent me in case I screw up again

Pokey it’s in the tapering section of the site if you need it again. You can also set it as a favorite on your internet browser if that helps.

Do try your best to not mess the dosing up. It’s another little bump that doesn’t help unfortunately.

I’m glad you slept better. Makes all the difference I know.

I agree wd is a big part of this but other health issues can certainly play into all this. I’m glad you are getting checked out to be safe.

Let me know what your sleep doctor says.

Hiya @Pokey449 jsut checking in to see how you're doing. Hope you're well and thinking of you x

@Chippy @cherrysquid To be honest I’m losing hope- that I’m ever going to be well again. That I’m ever going sleep soundly again. That I’m going to be able to travel in September to be with my family or perhaps ever. I’ve been alone since January and it’s getting to me. I’m at day 165 of the same dose and my nights continue to be a literal nightmare. I wake suddenly, restless & anxious, often with nausea that comes & goes in waves. I will sometimes fall back to sleep for a bit to waken later with the same sxs. . Often whole body pain accompanies these episodes as well. After I get up for the day most of the above sxs dissipate, but im left with crushing fatigue & just plain feeling rotten. Sick even. I often cancel appointments because I’m either to tired to drive or don’t feel Well enough to go.

I keep thinking I surely should be getting some relief by now. Where’s my window??

I can’t let go of thinking what I have going on is idiosyncratic at the least or an ADR at the worst. But Dr. H says it’s not an ADR but I remain skeptical. I looked back at my dosing/symptom notes and I was having some of the same sxs a year ago.

I just can’t keep this up. I’m just about worn out. In fact I’ve been nodding off writing this 🫩

1 hour ago, Pokey449 said:

@Chippy @cherrysquid To be honest I’m losing hope- that I’m ever going to be well again. That I’m ever going sleep soundly again. That I’m going to be able to travel in September to be with my family or perhaps ever. I’ve been alone since January and it’s getting to me. I’m at day 165 of the same dose and my nights continue to be a literal nightmare. I wake suddenly, restless & anxious, often with nausea that comes & goes in waves. I will sometimes fall back to sleep for a bit to waken later with the same sxs. . Often whole body pain accompanies these episodes as well. After I get up for the day most of the above sxs dissipate, but im left with crushing fatigue & just plain feeling rotten. Sick even. I often cancel appointments because I’m either to tired to drive or don’t feel Well enough to go.

I keep thinking I surely should be getting some relief by now. Where’s my window??

I can’t let go of thinking what I have going on is idiosyncratic at the least or an ADR at the worst. But Dr. H says it’s not an ADR but I remain skeptical. I looked back at my dosing/symptom notes and I was having some of the same sxs a year ago.

I just can’t keep this up. I’m just about worn out. In fact I’ve been nodding off writing this 🫩

Is the traveling to see your family permanent? Like are you going to live with them or is it just a visit?

Im sorry you're still having a tough time. What is it you would like to do? Without jumping into action - what do you feel would be best? And dont listen to the lies WD tells you. That's you'll not get better or this is causing it or that. Its very hard to know what to do when you have your brain turning against you. For a while I felt like my medication was poisoning me and every cell in my body told me to stop taking it again. Of course that would have made me 100000x worse.

traveling to be with family in the immediate future is for a visit but the plan is to move there permanently. I’m certainly not up to a big move now. I’ve made 4 big moves in my life. They are intense and stressful so I couldn’t handle that now. But worried I’ll ever be able to. But this being alone is not good. Takes me to dark thoughts.

I’ve done two other tapers in my past. Had no problems but this one is hell. It’s my own fault. I should have never allowed myself to get into this mess. But here I am.