13 hours ago, Pokey449 said:

@Chippy Did you see the eclipse in your neck of the woods?? Total or partial?

I did, it was weird. It just got darker all of a sudden and the birds stopped singing etc.... Kinda eerie!

19 hours ago, Pokey449 said:

@Chippy I can’t disagree with your assessment. I’m very hesitant to say, but I think? the night time symptoms that I’ve been waking up with are improving. The Akathisia seems to have abated. I’ll exercise patience a while longer & hope things continue to improve 🤞🤞🤞🤞My sleep doc is coming up with some options that may help as well.

I am very pleased to read this mate. Remember windows and waves, if things get rocky again, it is often just part of the process. Extreme patience is required in WD.

My only caveat to my thinking is I’m not sure what to make of the pattern I’m experiencing now. That pattern is: I waken 1-3x anywhere between 2-6am. I’m in pain, ache all over. Groggy, headache, feel drugged is best I can describe it. I’m not SOB but deep breathing makes me a little better. I do some stretches in bed. I’ll go back to sleep to waken feeling crappy all over again. After I finally get up and stagger out to the kitchen, make and eat some breakfast I feel lots better, sxs tend to go away, if I get 5-6hours of sleep. If I get less I tend to feel rotten all day. Think I have an odd combination of both WD and pain caused symptoms. I think my breathing is ok. It’s just very difficult to tell what all is going on. That’s what worries me.

@Chippy the more I assess my situation, the more I think about it & consider everything the more I think I’m in a CATCH 22. A catch-22 is a problem where you cannot win because the rules or conditions fight each other. The only way to fix the problem is blocked by the problem itself. [1, 2]

The only way to fix my problem is to get rid of the doxepin. But getting rid of it is blocked by the fact I can’t just get rid of the doxepin. I can’t just stop it. It will take years to taper off at the rate I’m going now.. Dr H has suggested I taper the doxepin to 25mg and stay there. I also have mirtazapine in my system which complicates things. Can’t believe my doctors were so F’ing stupid to do that to me. That I was so stupid to allow it. So really no way to get totally away from it all. The doxepin has caused me to gain weigh, weight I don’t need or want. Weight that is not healthy. I’ve modified my diet but so far it hasn’t helped. While the doxepin + the mirtazapine won’t kill me directly I fear it’s going to kill me indirectly. I fear I’m going to ever so slowly deteriorate and die, earlier than I would otherwise. I can feel that I’m slowly slipping down a hole. I mention all this because it’s always there in back of my mind. I try to put on a positive face like today after 6.5hrs of sleep last night, but this foreboding is always waiting in the wings of my mind.

@Pokey449 If I understood you properly, you wanted to say that after breakfast your feeling of being groggy and headache somehow fade away?

Hey @Pokey449 I am sorry mate. I feel your frustration and fear. You have summed up the position well. Tapering quickly may well make all this much worse, holding is hard and slow to gain results. I think in life you have to weigh up the options, make an informed decision and then hold the line.

@Chippy no I’m not suggesting I should do a fast taper. I know that would be a disaster. All I’m saying in my previous post is I think I’m stuck, I’m screwed. I’ll never be able to fully get off the doxepin. It’s simply going to wear me down to the point that some bodily system is going to fail and I’ll die. We all gotta die from something. I think this will be my Waterloo.

19 hours ago, Pokey449 said:

@Chippy no I’m not suggesting I should do a fast taper. I know that would be a disaster. All I’m saying in my previous post is I think I’m stuck, I’m screwed. I’ll never be able to fully get off the doxepin. It’s simply going to wear me down to the point that some bodily system is going to fail and I’ll die. We all gotta die from something. I think this will be my Waterloo.

Im sorry you feel this way Pokey. Thinking this way isn't helpful tbh. Better to focus on the day, live with hope in your heart, trust your body. Alot of catastrophising happening here, nervous system needs some peace mate, try to give it it as much as you can.

@Chippy i understand your argument of the need to maintain a positive outlook. To believe things will work out, to have a sense of hope, to trust my body. Believe me, I try. But I’m having a hard time to holding on.

Im constantly tired and not feeling well. Night time my bedroom has become a torture chamber. I have peaks yes, but the valleys always seem to come back. The awful symptoms just drag on & on. I’m all alone all the time and especially feel alone in a dark empty house at 2 or 3 or 4am when I wake up in distress. Ive postponed my trip to be with family 2x now. Im scheduled to try again in early September but im already having doubts I’ll make it. I just keep having little to no lingering relief. I’ve lost purpose in my life and I’m living in a location I really don’t much like.

So I’m having to reframe daily, sometimes hourly. That in itself is really hard to do when feeling so tired, run down and beaten

17 hours ago, Pokey449 said:

@Chippy i understand your argument of the need to maintain a positive outlook. To believe things will work out, to have a sense of hope, to trust my body. Believe me, I try

Good.

17 hours ago, Pokey449 said:

But I’m having a hard time to holding on.

The word 'But' erases everything that has come before it mate. Don't allow yourself to have the option.

17 hours ago, Pokey449 said:

m constantly tired and not feeling well. Night time my bedroom has become a torture chamber.

I am sorry to hear this mate. I truly believe if you can shift your mindset to this suffering, your bedroom can become somewhere you can rest, even if you don't sleep as well as you would like. I know this as I have learned it for myself.

17 hours ago, Pokey449 said:

I have peaks yes, but the valleys always seem to come back.

As you know, this is so common in wd, yesterday was terrble for me, and I found it hard to imagine it being better, however today is better and I can see the light again. I think the light is increasingly becoming a feature in my day. So I am improving over time.

17 hours ago, Pokey449 said:

The awful symptoms just drag on & on.

I know they do mate. That is where radical acceptance comes in.

17 hours ago, Pokey449 said:

I’m all alone all the time and especially feel alone in a dark empty house at 2 or 3 or 4am when I wake up in distress.

I understand, this is hard. Acceptance can be appiled to all elements of life though, change what you can and accept the rest.

17 hours ago, Pokey449 said:

I’ve lost purpose in my life and I’m living in a location I really don’t much like.

I empathise, my life is so different to what I know or want for it. However within this WD life I am making the best of my time. I am still suffering however acceptance and distraction is helping me live (best I can) whilst I heal. You can too.

17 hours ago, Pokey449 said:

So I’m having to reframe daily, sometimes hourly. That in itself is really hard to do when feeling so tired, run down and beaten

This is good you can see this. Do it each minute if that is what it takes some times, it doesn't matter, as many times as you need. We have no other choice but to accept, resisiting causes so much more pain and I don't think aids the healing either.

@Chippy Another terrible night. Waking multiple X in pain & with a god awful sickening wave, a whole body spasm is the best I can describe it washing over me causIng me to draw myself up into a ball. Getting up I could hardly walk from being weak & unsteady. Nausea!! I’m slowly slipping & becoming weaker & more exhausted by the day from the lack of sleep. . I’m coming to the conclusion that I don’t think this is garden variety WD but rather an idiosyncratic, unknown adverse affect of the mirtazapine & doxepin in my system thats been slowly progressing to where I’m at today.

Once I’m up and moving & have some breakfast I feel better. Not today. Im flopped in my recliner feeling too unwell to eat. Hope is waning.

@Pokey449, I think that this suffering is WD, I have the same horror. I wake up each 2 hours with an awful feeling of body spasm and terror, inner akatisia... All my body is under pression, relentless, Hell... But we have no choice, we have to hold on and survive minute by minute...

Svetla

And terrible nausea, @Pokey449, terrible... I take ginger to try to calm this hellish symptom.

Svetla

@skamen Hi Svetla. I just feel like I’m slowly slipping deeper into a hole. I’ve been at the same dose for 6 months, actually longer when looking back army dosing chart. You’d think I’d start feeling a little better by now instead of getting/feeling worse,???? I have my doubts I’m going to be able to travel in 3 weeks to be with family though I’m so tired of being alone. We’ll see I guess

a whole body spasm

That's the best description of everything, this way or another way.

@Chippy I just googled “does liquid doxepin lose its potency over time. Should it be used if it’s 5 months old? My current 150ML script was dispensed 5 months ago and supposed be good for a year. I only draw 2.9ML (29mg) per dose But AI says I shouldn’t use it 5 months out. Maybe it’s lost some potency & that’s why I’m feeling so crappy. I’d prefer to be on capsules but they don’t make a 29mg cap. What do you think would happen if I switched to a 25mg cap & used liquid for the additional 4mg for the 29mg total??

1 hour ago, Pokey449 said:

@Chippy I just googled “does liquid doxepin lose its potency over time. Should it be used if it’s 5 months old? My current 150ML script was dispensed 5 months ago and supposed be good for a year. I only draw 2.9ML (29mg) per dose But AI says I shouldn’t use it 5 months out. Maybe it’s lost some potency & that’s why I’m feeling so crappy. I’d prefer to be on capsules but they don’t make a 29mg cap. What do you think would happen if I switched to a 25mg cap & used liquid for the additional 4mg for the 29mg total??

Pokey if the official guidance is 1 year for your type then I would take that. It sounds like more to me you are looking for causes and levers to pull. Remember more changes are often bad when destabilized from what we observe.

I can’t argue with your analysis of my looking for causes & levers to pull to feel better.. I questioned the shelf life & potency of the liquid doxepin to make sure I wasn’t missing something that could be messing me up. Everything indicates it’s not the problem. I’m just desperate for relief & wanting my life back

14 hours ago, Pokey449 said:

I’m just desperate for relief & wanting my life back

Me too mate, i understand. I keep banging the drum, but is where being stoic and acceptant is so very important.

@Chippy i can’t figure out what all is going on and why. Last night I got 6.45hrs of decent sleep according to my smart watch and the app on my phone that tracks my cpap therapy. My sleep score was 87. Pretty good. Yet I woke up with headache, groggy thick feeling head. Aching all over. I feel almost human today. Yesterday I thought I had one foot in the door of the morgue. Today I have an eye appointment I’ll go to. Yesterday I should not have been on the road driving. The ying & yang of all this is maddening. I follow the same boring pattern day after day yet there’s no consistency in response/outcome. It’s maddening.

7 minutes ago, Pokey449 said:

Yet I woke up with headache, groggy thick feeling head. Aching all over. I feel almost human today. Yesterday I thought I had one foot in the door of the morgue.

@Pokey449 . I know exactly these feelings. We all have felt the same way. Yet, we are still here and moving forward. The nerve system is so complex that it makes us feel diseases that we don't have. This is the reason when you go doctor and they find everything normal.

Inside my yearly appointment and thanks God everything is fine. All organs, heart , blood pressure (is. Being great after reduction). All good.

We need to continue trying to cope with all of these. You have had good days which it is a sign your body is healing. After 15 months, I had my first 9 consecutive weeks feeling great, just to loose it again. Now, I'm back to this ups and down. Muscle pain, burning sensation, anxiety, panic, etc. It's all a lot better but I'm still having those issues. Even if my wife makes sounds like "Oh my Gosh", and she is next to me, my body jump into panic for a second. It is freaking ridiculous what we go through.....

The other day, she said, Guess what, and my body jump into panic for a second. Very ridiculous!!!!!

We just need to TRUST our body and eventually, it will come to feel better. Unfortunately, it's a slow process...

Hanging there. You are doing great...look at the days you felt normal.

@Raymond thanks for your post. Nice to know I’m abnormally normal 🤣😂 It’s been a while since I felt like the old me. I was a very active guy. I use to live in Alaska going up & down mountains at 6&7K ft carrying 50-60 lbs on my back still at the age of 65 .

Now some days it’s all I can do to get out of my recliner. I hope the day is coming they throw all these nasty psych drugs into the landfill. That they become regarded as comparable to bleeding people or using leeches to “cure” folks.

The most frustrating thing for me is I can’t plan my life. I never know from one day to the next what kind of day it will be.

Did you mesn it took 15 months before you finally stabilized, after no changes I assume, and even then it didn’t hold?

2 hours ago, Pokey449 said:

@Raymond thanks for your post. Nice to know I’m abnormally normal 🤣😂 It’s been a while since I felt like the old me. I was a very active guy. I use to live in Alaska going up & down mountains at 6&7K ft carrying 50-60 lbs on my back still at the age of 65 .

Now some days it’s all I can do to get out of my recliner. I hope the day is coming they throw all these nasty psych drugs into the landfill. That they become regarded as comparable to bleeding people or using leeches to “cure” folks.

The most frustrating thing for me is I can’t plan my life. I never know from one day to the next what kind of day it will be.

Did you mesn it took 15 months before you finally stabilized, after no changes I assume, and even then it didn’t hold?

@Pokey449 feeling abnormal normal is the way we all feel..😂. I am better at 21 months, but I don't think that I'm stable to normal yet. I can manage to do few things now, but I'm still in my ups and downs on a daily basis. Mostly, bad symptoms are during morning hours. Then, it gets better in the afternoons. I can tell you that I'm probably feeling 80% better in the last 9 months or more. Yet, every time I reduce, I am back in hell for few days before feeling better....

What a rollercoaster.....

Im also active person, but this journey has made it difficult to even do simple task....

17 hours ago, Pokey449 said:

@Chippy i can’t figure out what all is going on and why. Last night I got 6.45hrs of decent sleep according to my smart watch and the app on my phone that tracks my cpap therapy. My sleep score was 87. Pretty good. Yet I woke up with headache, groggy thick feeling head. Aching all over. I feel almost human today. Yesterday I thought I had one foot in the door of the morgue. Today I have an eye appointment I’ll go to. Yesterday I should not have been on the road driving. The ying & yang of all this is maddening. I follow the same boring pattern day after day yet there’s no consistency in response/outcome. It’s maddening.

I empathise with all of this my friend. It is very frustrating. Sounds all very typical of WD to me.

Ugghh! Sunday night was a good nights sleep. I felt close to normal yesterday. Last nights sleep was terrible. I woke up twice in great discomfort feeling sick. Especially so my final wake up. I could barely get up and walk to the bathroom this morning. I think WD is compromising my cpap therapy and vise versa. I don’t know what all is physically happening to me, why I feel so ill upon awakening. Some system, some bodily process(es) is/are being negatively affected. It’s not healthy for sure and perhaps life threatening given enough time if it chronically continues. The way I felt this morning dying would almost be a blessing 😩😢