Morning @Chippy Well I think ??? brining the 2nd 1/2 of my doxepin dose back towards the 1st 1/2.is allowing me to get more total time of sleep. I got 5.5hrs last night. Today’s doses will be at 8am and 12noon today. I’m going to hold for a few days at 12 noon before moving on. I’ll cross my fingers and hope things improve but I’m still having troubling unpleasant sxs at night. I continue to believe it’s an adverse drug affect that’s affecting my respiration or possibly my heart.

I wake up with the sxs that I’ve described previously, so will spare u today. I get up and go to my recliner and self masssge, deep breathe, do come stretches. The sxs slowly abate &/or go away entirely. I go back to bed/sleep only to awaken later with the same scary sxs having returned. I don’t think WD sxs would come and go like that???? Hopefully as I move closer to a single dose it will help.

However If it is an adverse drug affect that’s affecting either my respiratory drive or my heart I don’t know what the hell I can do differently about it 🤔🤔

Today marked day 100 at the same total dose of doxepin @ 29.6mg.

@Pokey449 pleased you got more sleep. That’s good news. Hopefully that continues particularly as you continue to shift your dose.

Once you are back at your single dose timings and holding without change hopefully you’ll start to improve some more from there.

@Chippy I fear that I’m losing hope. I wake ip in fear in a lonely dark house. I’m becoming increasingly self assured I’m going to die from all this. I find myself wishing I actually will so I can be done with it. It’s nothing more than exhausting existence. It’s certainly not living. I’m alive, my heart is beating. That’s about it.

Don’t loose hope @Pokey449 it is awful I know. Remember that post I put on finnis page. We’ve got this. We shouldn’t have to. But we do.

@Chippy I hear you. I read the post you put on Finnis thread. Inspiring for sure but I fear I’m slowly becoming immune to inspiration. I can’t feel it anymore.

Having a hard time finding anything in my life that gives me a.reason to get up in the morning. I don’t know what my purpose is anymore. After retirement I was heavily engaged at least in music, playing my French horn in an orchestra & small groups. Don’t even have that anymore.

My wife is 500 miles away in Ohio living with my daughter and has told me she doesn’t want to live with me 24/7 anymore even if I move to Ohio. My best friend has moved to the east coast. I’m literally alone with no purpose in life dealing with this daily/nightly misery.

I’m supposed to do an in lab sleep study tonight. I really don’t want to do it. I hate sleep labs!!!! Fear it will be a miserable night that will in the end offer no insight into my nighttime misery or benefit.i know it will be the last time i ever do it if i do.

I’m going to try and get out of the house today to go to the health club for some exercise. Sitting in the house alone, exhausted most every day is becoming a miserable existence that I don’t want anymore. Some things need to change if I’m going to survive.

I think things will improve for you mate. Reframing it in your heads really important I think. I’ve heard Lighty mentioning something I’ve heard before. How people with incurable cancers put in a room with comedy on the tv or sent to nice retreats/environments recover. So I think the mind is powerful and as much as it will heal without us I do think it might help to keep a good frame of mind, as much as possible. At the min it reduces the suffering.

25 minutes ago, Pokey449 said:

Inspiring for sure but I fear I’m slowly becoming immune to inspiration. I can’t feel it anymore.

Having a hard time finding anything in my life that gives me a.reason to get up in the morning

@Pokey449 . We all have been on this journey as you are now. It's terrible and I felt the same many times too. No one should be on this mess. It's inhumane to be this way. But remember, as bad as it feels, your body is trying to heal to its natural state. Keep holding. Try to see small improvements rather than bad ones. Do not give up on this. This journey plays a lot in our minds making us feel that we won't make it, but we will. Hanging in there...

1 hour ago, Pokey449 said:

@Chippy I fear that I’m losing hope. I wake ip in fear in a lonely dark house. I’m becoming increasingly self assured I’m going to die from all this. I find myself wishing I actually will so I can be done with it. It’s nothing more than exhausting existence. It’s certainly not living. I’m alive, my heart is beating. That’s about it.

When is your next sleep

Study?

Hi Finni. My next and I swear my final sleep study is tonight. I’m most interested in the EEG& EKG. I think BIPAP is handling my mild-moderate apnea fine. I’m concerned the doxepin is affecting the respiratory center in my brain or affecting my heart rhythm. But I’m not catching anything with my smart watch or Bipap data each night. But Something not good is going on in my sleep.

Thanks @Raymond. I hear what you’re saying. Doing my best to hang in. Just gets really old and exhausting and family & friends just don’t understand how hard & miserable it is.

Thanks to you @Finni as well for checking in. I know you’re going through hell too.

Had my sleep study last night. It’s such an unnatural sleeping experience. Astronauts are not as “wired up” as I was last night. Then you’re in a strange room, strange bed with a technician coming in & out. It’s not conducive for sleep at all, at least for me it’s not. I think I only slept a total of 3 hours. It supposed to be a titration study where they adjust pressures etc. I’m not sure what all they did, I won’t find out for another week. The main thing I noticed when I woke up from when I did sleep I was not in pain & agony like I am at home. So maybe this will turn out to be a good thing 🤞🤞🤞

The lousy night in the sleep lab has turned out to not be helpful with my doxepin taper. I’m feeling terrible now. Exhausted, feel ill. Can’t sleep. I need to get some things done but I have no umpf!!! It’s going be recliner day all day.

@Chippy something just dawned on me that may be having an affect how I’ve been feeling Often. I take my 2 doxepin doses in close proximity to breakfast & lunch now. I’m wondering if doing so may be affecting the absorption of each dose of the drug. Currently I take a 1/2 at 8am and the other 1/2 currently at 12noon, about the times I eat breakfast & lunch. I’m in a wave today feeling very restless, nausea, can’t nap, exhausted, fearful etc. A typical wave miserable awful feeling. A wave it seems to be out of the blue. I’ve not made a decrease in doses or changed any dosing time since I reached 12 noon for taking my other 1/2 dose. If the breakfast & lunch meals are affecting the 8 & 12 o’clock doses absorption then I need to make some changes in timing of eating in relation to my dosing times.

Any thoughts on the premise??

20 hours ago, Pokey449 said:

Had my sleep study last night.

Good to hear Pokey

20 hours ago, Pokey449 said:

The main thing I noticed when I woke up from when I did sleep I was not in pain & agony like I am at home. So maybe this will turn out to be a good thing 🤞🤞🤞

That is interesting, I look forward to the results.

14 hours ago, Pokey449 said:

The lousy night in the sleep lab has turned out to not be helpful with my doxepin taper. I’m feeling terrible now. Exhausted, feel ill. Can’t sleep. I need to get some things done but I have no umpf!!! It’s going be recliner day all day.

Sorry yesterday was a bit of a wash out for you, Im not surprised given the sleep you had.

12 hours ago, Pokey449 said:

Any thoughts on the premise??

I think we have covered the absorption idea before and decided it probably isn't a factor for you. I believe you also spoke to Dr H about this too?

It sounds like either moving the dose is causes these day time symptoms or maybe it's just a 'normal' wave. Holding the split sounds wise for a few days to let things settle down for you IMO.

Hope you feel better today and get some decent rest tonight.

If you wanted to experiment, without causing significant instability, you could shift your dose times back by 15min ever few days, until they are an hour or two after food, for example:

• 8:15 and 12:15

• 8:30 and 12:30

• 8:45 and 12:45

and so on until it's maybe 10 and 2.

That being said, I doubt it's the cause of the significant side effects you're experiencing.

@Chippy @Luke Thanks for the feedback. I think I’ve got more than one thing going on that is affecting how wretched I’m feeling

Sleep. It’s terrible. I awoke again last night with the same miserable, hard to describe symptoms: Pain, restlessness/Akathisia feeling the need to take deep breath's, profound sense of unease, headache. My whole body feels hypoxic. I truly think the respiratory drive in my brain is beihg suppressed. If that’s the case I don’t know what can be done about it. I can’t just stop the doxepin. Maybe what the sleep tech did last night with my pap therapy will address it but I won’t know about my sleep study for another couple weeks. I do honestly believe if I don’t correct whatever is going on in my sleep it is going to kill me. I just feel it s getting worse and is becoming more ominous. At least my body says it’s getting worse.

WAVES: If that’s what’s happening nothing to do but ride it out.

Dosing issue?: At my last session with Horowitz it was decided I should return to taking a single dose versus 2 half doses. I’ve been working at moving my afternoon 1/2 dose towards my 8am 1/2 dose. To achieve getting back to a single dose sooner & address the possible absorption issue maybe I should move both 1/2,doses towards each other. Such as

8:15& 11:45

8:30 & 11:30 and so forth until they both meet at 10:00am.

Any thoughts or advice is appreciated.

Pokey

20 hours ago, Pokey449 said:

@Chippy @Luke Thanks for the feedback. I think I’ve got more than one thing going on that is affecting how wretched I’m feeling

Sleep. It’s terrible. I awoke again last night with the same miserable, hard to describe symptoms: Pain, restlessness/Akathisia feeling the need to take deep breath's, profound sense of unease, headache. My whole body feels hypoxic. I truly think the respiratory drive in my brain is beihg suppressed. If that’s the case I don’t know what can be done about it. I can’t just stop the doxepin. Maybe what the sleep tech did last night with my pap therapy will address it but I won’t know about my sleep study for another couple weeks. I do honestly believe if I don’t correct whatever is going on in my sleep it is going to kill me. I just feel it s getting worse and is becoming more ominous. At least my body says it’s getting worse.

WAVES: If that’s what’s happening nothing to do but ride it out.

Dosing issue?: At my last session with Horowitz it was decided I should return to taking a single dose versus 2 half doses. I’ve been working at moving my afternoon 1/2 dose towards my 8am 1/2 dose. To achieve getting back to a single dose sooner & address the possible absorption issue maybe I should move both 1/2,doses towards each other. Such as

8:15& 11:45

8:30 & 11:30 and so forth until they both meet at 10:00am.

Any thoughts or advice is appreciated.

Pokey

Hey @Pokey449

It is your call of course. Personally Im not convicted on the absorbtion issue. What I do know is you have tried moving doses around and it seems to have made you worse. What we do know is less changes is better for the brain. I think it is hard to accept there is no tweak to make all this right, but in reality in most circumstances time and zero changes inc dose shifts is the best thing you can do.

Hope sleep is better tonight mate.

You could try slowly adjusting towards a single dose, rather than straight switching, if this is something you want to do.

When there are multiple drugs involved, it can become difficult to unpick what is causing what.

Anecdotally I've known others who developed sleep apnoea after coming off of psychiatric drugs, or whilst on them. What you do about that, I don't know.

@Luke @Chippy working towards a single dose is what I’m attempting to do. I’m moving the first 1/2 dose & the 2nd 1/2 dose slowly towards each other.

I’m skeptical doing so, slowly moving the doses towards each other, is what’s making me wake 1-3x during the course of the night & early a.m. feeling completely, horrendously awful.

I believe I’m having an adverse drug affect from one drug or the combination of the mirtazapine & doxepin. But I’ll admit I don’t actually know what’s physically happening exactly.

I’ll awaken in great physical discomfort with pain both focalized in my low back but hurting all over as well. It’s an awful whole body pain. A creepy crawling feeling throughout my body that comes & goes in waves. Waves of nausea. Headache often but not always. Spotty aches/pains/pins& needles in either my left shoulder, elbow , arm or hand (worried it’s my heart). Heart rate seems ok, when I am able to check it. No idea what’s happening with my BP. But I believe I’m having a some sort of idiosyncratic reaction. The symptoms are intense upon awakening which slowwwly go away after a while. I’ll fall back to sleep only to awaken later with the same sxs all over again. Once I’m up for the day that’s the end of them until the next night.

I know I’m losing ground physically & mentally. I feel like I’m slowly getting more worn down over time and it’s taking more time and harder to recover. Feel like I’m in slow quick sand and if I don’t get out of it soon I’m not going to make it. I can hardly function some days. I need groceries but I’m to damned tired to go shopping. I’m increasingly spending more time on my recliner than staying active. I’m physically and mentally slowly slipping into a dark , scary place and I’m doing it here all alone. It all seems to be getting worse and I’m terrified.

Hey @Pokey449

I am very sorry to hear you are still in the trenches mate.

Hopefully moving the doses and then leaving them alone for an extended period of time will help settle things for you.

I don't really have much to say about the interaction of the two drugs as we have covered this before. Really you just need lots of time I think at this dose at a set time and let things settle down. If you consitently worry about it being a drug interaction I don't think it serves you.

Are you able to get a home delivery on the days you don't full up to the shops?

We are right there with you Pokey you are not alone my friend.

I hope you can find something that eases it enough to function ok.

@Chippy @Luke I’ve gotta find some point of stability or I don’t think I’m going to make it. I’ve not been outta the house today. I’m worthless today given how I feel. Tried to nap and couldn’t. Cant lay still, relax enough to fall asleep.

First Horowitz suggested splitting my dose into 2 halves to address possible interdose WD. Then advised moving back to a single dose based on what I was telling him about my sxs. I think the back n forth has not proven helpful. My dose log/notes indicates I was getting more sleep at a single daily dose. But I’m not so sure that will turn out to be the case. I don’t know what to believe/do anymore. Fear I’ll never stabilize. Just hope I can get to a single dose situation without to much more misery. Currently 3 hours separates my 2 half doses. So hope to be at a single dose soon and get some rest, peace and be able to function

11 hours ago, Pokey449 said:

I’ve gotta find some point of stability or I don’t think I’m going to make it.

Pokey it is so important for you to control what you can and let the rest go. You can't choose to get stable, that is out of your control. But you can choose your mindset around your situation. It is important not to make statements like 'I've gotta get stable' etc as that just stresses you out more, it won't help you. I have woken in a shocking state to be honest, and I felt the frustration set in and I could actively feel it make me feel worse, so I just have to calm myself down, deal with the next hour, engage my coping skills like acceptance, use my well oiled routine to get through the day and hope tomorrow is a better day. That is what we all have to do regardless of symptoms, on or off the drug. Mindset is everything.

11 hours ago, Pokey449 said:

First Horowitz suggested splitting my dose into 2 halves to address possible interdose WD. Then advised moving back to a single dose based on what I was telling him about my sxs. I think the back n forth has not proven helpful. My dose log/notes indicates I was getting more sleep at a single daily dose. But I’m not so sure that will turn out to be the case. I don’t know what to believe/do anymore. Fear I’ll never stabilize. Just hope I can get to a single dose situation without to much more misery. Currently 3 hours separates my 2 half doses. So hope to be at a single dose soon and get some rest, peace and be able to function

This is always my fear with making changes, the brain hates them, and whilst there are good reasons to try splitting doses, it is still a change and can be upsetting to the nervous system, plus you have found that the doses being seperate has had the opposite effect to which you hoped. So now you are moving the dose back to a single dose at a single time. Hopefully this will help, but I would suspect it might not help immediately and you will need to consider that a reset point, ground zero on your hold, give your brain the single dose at a set time without any more changes and just hold tight and let it do the work only it knows how to do. No one understands how to resolve this better than your brain, its way smarter than any doctor.

Then you must engage/learn the coping skills needed to cope with each day, making sure to only think about the day at hand and giving no thought to the future or the past, or your concept of what you should or shouldn't be able to do in a day, or what someone else thinks you should or shouldn't be able to do. It may sound extreme or a harsh thing to ask yourself to do, but radically accepting your situation is the only way.

Im sending lots of love hope your way and I have everything crossed you sleep better tonight.

Morning @Chippy I think I should fire my psychologist and hire you instead 😁 Much of what you say is good advice which I agree with. Just hard to live 100% of the time every day when I feel like warmed over dog poop 💩

Yesterday most of the day I felt rotten from hardly any sleep the night before. Spent the day in my recliner. Then miraculously last night I got 6.5hrs of sleep and feel 1/2 way human today. Not sure what the difference is. My first thought is I got a good night of BIPAP therapy for a change. I think I’ve got a multifaceted situation, like many here, that one issue can complicate the other.

So today I’ll go to the health club and get some much needed exercise and keep my fingers crossed for another decent night. Life’s challenges are so much more manageable when a bloke can get a decent nights sleep.

Thanks again for your wise words. I appreciate everything you do for me & others here.

3 minutes ago, Pokey449 said:

Then miraculously last night I got 6.5hrs of sleep and feel 1/2 way human today. Not sure what the difference is.

I think in WD things are just random, last Saturday I was in a pretty place and out hiking in the hills, today I can barely make it out the house tbh!

4 minutes ago, Pokey449 said:

I think I should fire my psychologist and hire you instead 😁

🤣 I will continue to support here for free lol! I wouldn't want anyones money, just for all of us to get our lives back!

5 minutes ago, Pokey449 said:

Life’s challenges are so much more manageable when a bloke can get a decent nights sleep.

Never has a truer word been spoken.

6 minutes ago, Pokey449 said:

Thanks again for your wise words. I appreciate everything you do for me & others here.

Pleasure mate, enojy your time out. You deserve it!