3 minutes ago, Pokey449 said:

@Chippy @Finni I can’t tell you exactly as I lost those pages of my dose log but That reduction of Mirtazapine was very short lived. I went back to my baseline dose after a couple three days as I recall. I was feeling much better this time last year I know.

I’ve been having pain sxs and sleep disturbances for as long the doxepin taper has been going on which is over a year now. But my sleep & especially my respiration during sleep has been getting progressively worse. I’m totally useless today. Can’t get beyond my recliner today. I was still able to travel and be functional back in December & January. I had planned to travel later this month but have postponed the trip. I had a medical appointment Friday that I had to change to virtual and appointments this week I don’t know if I’ll make them or not. I shouldn’t be driving when I’m this exhausted & feeling so bad. I’m all alone and the isolation on top of the pain & exhaustion is eating me alive. It’s all horrible!!!

I’m so so sorry!

20 minutes ago, Pokey449 said:

can’t tell you exactly as I lost those pages of my dose log but That reduction of Mirtazapine was very short lived. I went back to my baseline dose after a couple three days as I recall.

From what I concluded reading your SA thread I think the mirt shift was the start of all this but not the only cause for sure, just the beginning.

@Chippy @Finni i just looked at my dose taper history here. I stand corrected. It appears I made a big Mirt cut back early last year and took longer to reinstate back to my original dose than I recall. But still I felt way better this time last year than I do now. I truly think the doxepin is messing with my respiratory function which is waking me up in a lurch multiple times a night exhausting me from sleep deprivation. I’m terrified I’m going to die in my sleep or have a heart attack

3 minutes ago, Pokey449 said:

I made a big Mirt cut back early last year and took longer to reinstate back to my original dose than I recall.

Yes but you were destabilised and then tapered whilst in the position which worsened you Pokey.

@Chippy I don’t doubt your assessment. Just saying all things considered I’m feeling worse now than I was a year ago. And I’ve been at the same dose of 29.6mg now for 86 days. Im really concerned about what’s happening with my breathing at night. I recall Sminismoni saying if the doxepin is suppressing my respiratory drive it could get worse as the dose decreases because it’s more sedating at lower doses. I think Im having a mix of sxs due to tapering/WD plus an adverse drug affect, if that makes sense?

13 minutes ago, Pokey449 said:

@Chippy I don’t doubt your assessment. Just saying all things considered I’m feeling worse now than I was a year ago. And I’ve been at the same dose of 29.6mg now for 86 days. Im really concerned about what’s happening with my breathing at night. I recall Sminismoni saying if the doxepin is suppressing my respiratory drive it could get worse as the dose decreases because it’s more sedating at lower doses. I think Im having a mix of sxs due to tapering/WD plus an adverse drug affect, if that makes sense?

It’s does mate. It’s certainly possible to have wd and adverse reactions at the same time. I really hope this isn’t the case!

You seemed to be better overall I thought, like your day symptoms are better? But you think nighttime is worse?

@Chippy Night time is definitely worse than it was. My heart rate is higher than usual upon awakening which would make sense if my breathing is compromised. My SPO2 lower than it should be at times. I’m definitely waking distressed more often than I was. When I have checked my BP it is higher than normal as well. I historically have low BP upon awakening. I think I’m entering or in a possible danger zone and I don’t know what to do about it.

Wondering if I should email Horowitz and ask if it is possible to have a special consult?

4 minutes ago, Pokey449 said:

@Chippy Night time is definitely worse than it was. My heart rate is higher than usual upon awakening which would make sense if my breathing is compromised. My SPO2 lower than it should be at times. I’m definitely waking distressed more often than I was. When I have checked my BP it is higher than normal as well. I historically have low BP upon awakening. I think I’m entering or in a possible danger zone and I don’t know what to do about it.

Wondering if I should email Horowitz and ask if it is possible to have a special consult?

I don’t think that’s a bad idea Pokey! Better safe than sorry. Obviously we aren’t doctors on here. Good to get his advice!

Hoy are you, @Pokey449? How was your last night?

Svetla

@skamen Hi Svetla: I continue to follow the same pattern of some nights being lots better than others and some nights being terrible. In either case I continue to wake up night 2-3x in physical distress. I literally ache all over my body. I get up but am so stiff I can hardly walk. I go out in my living room to my recliner to lay and “work off” the symptoms. I’m also usually very groggy and thick headed feeling. I have to take deep breaths to relieve the pain and feel like I can breathe better. Something is going on with my heart but I’m not sure what. My smart watch says my EKG is inconclusive. It’s not clearly AFib which I have a history of but something is amiss with my heart. I personally think the doxepin in my body is potentially dangerous and may end up killing me, but my doctors think I’m nuts. Simply because they have no clue what’s happening to me. If they can’t measure it in someway then it’s assumed I’m a “head case” and write me off. Something not good is happening to me!!!!

It can be so demoralising dealing with doctors @Pokey449 The level of ignorance is astounding

Yes @Catbird im becoming less impressed with most doctors the longer I have to deal with them, especially as it relates to being on & getting off psychotropic medications. The large majority have not a clue and resent you questioning them.

How are you doing??

@Pokey449 I’m holding for a few months now until my symptoms settle, too much pain to deal with.

@Catbird hows your sleep? Sleep is my nemesis. My sxs during the day have subsided but my sleep sucks. I wake up 2-3x a night feeling awful and have to get up to “work off” the sxs. My smart watch says I’m getting mostly light sleep, then REM and very little deep sleep. I’m exhausted most days as a result.

10 hours ago, Pokey449 said:

@Catbird hows your sleep? Sleep is my nemesis. My sxs during the day have subsided but my sleep sucks. I wake up 2-3x a night feeling awful and have to get up to “work off” the sxs. My smart watch says I’m getting mostly light sleep, then REM and very little deep sleep. I’m exhausted most days as a result.

One of the worst things is having poor sleep @Pokey449 I feel for you. It leaves one feeling very depleted, vulnerable and depressed. My mind takes me to dark places in the middle of the night when sleep eludes me. Mine is okay atm, but I know as I progress with my tapering I'll get to a stage when I'll be having lack of sleep. I try not to think about it. I'll cross that bridge when I get there ☹️

Greetings @Chippy I hope all is well with you and the UK this morning. I’m better than many mornings of the past but not as well as I wish I could be. I continue to wake in the night in great physical discomfort. Literally I hurt/ache all over, headache, often with nausea. Mild SOB and the strangest awful discomfort pain-like sensation that comes and goes through my whole body in waves. My O2 and heart rate appear to stay within normal limits except I don’t know what’s happening when I’m asleep. After I waken the symptoms hang on for some time. Gradually they will lessen and I often fall back asleep only to awaken later with the same symptoms all over again. It’s only when I finally get up for the day that they completely go away- that is until they awaken me the next night.

Do WD sxs come and go like that? In my case only occur at night and go away when I get up??? The above scenario is why I think what I’m experiencing is a negative side affect of the medication(s) rather than WD per se. I’m posing these questions to Dr H as well.

Whichever is going on it aint healthy in my opinion.

Morning @Pokey449 glad things are not as bad today. I’m on a run of better but not perfect days too.

I think you are dealing with wd type symptoms myself. We all seem to have some kind of sleep issues on here at least at some point. These drugs really mess with sleep especially Doxepin and Mirtazapine.

@Chippy I’ve been holding at the same dose of doxepin now for 90 days. I’m still having terrible nights of broken sleep with pain and other symptoms. How long could I conceivably have to hold at my current dose? You’ve said some people have to hold a long time. What’s a long time? 90 days seems like a long time to me???

On top of this poison disrupting my sleep my struggles with CPAP and my back pain issues aren’t helping me with sleep either.

I’m starting to wonder how much longer I can keep this up. I’m exhausted and have no life. I don’t go anywhere or do anything except go to medical appointments. Ive decided im not going to travel to be with my family until i start getting stretches of being more like normal. I just don’t want to be like this with my family or be away from the safety & familiarity of my home base. Then again I’m worried I’ll never feel “normal” again 😢To be perfectly honest I worry this will eventually kill me. It’s much to hard on a 77 y/o body.

I am sorry @Pokey449 i wish there were a magic wand to fix this.

I’ve heard of holds 12-18 months before stabilising. I that is not a what you want to hear. That doesn’t mean it will take you that long.

I’m sure you’ve had back issues before wd maybe? But joint pains and in particular back pains are common on here. We’ve actually been speaking about it recently.

It sounds wise to me that to keep things local whilst you don’t feel good. The choice is yours but that is what I would do I think.

I know mate. Being older you might not bounce back as easily as a 20 yo. I get it.

The choice is obviously yours how to proceed but I’d not rock the boat and continue holding if it were me.

@Chippy no I won’t make another cut until I’m good and stable if that ever happens 🤔 II sure hope it’s not 12-18 months from now. I hate being alone here but it’s probably for the best as I’m no fun to be around. But I’m afraid at the same time of being alone with this going on. Afraid I’ll need EMS some night or afraid I’ll die alone. Being up & hurting in an empty dark house alone at 2am is very discomforting. It’s actually scary for me.

But my choices are limited. All I can do is do the best I can.

2 minutes ago, Pokey449 said:

All I can do is do the best I can.

I think all things considered you do great. And I agree we have to accept things as they are and play the hand that’s been dealt. Acceptance brings the peace I find and helps remove frustration. Maybe it can help with the fear too. It’s a powerful thing.

@Chippy i forgot to mention that I had another session with Horowitz scheduled this morning. I’ve been totally flummoxed with what’s been going on. Feeling like things at night have been getting worse. I just got off with him. I told him I felt like things have been gradually getting worse at night and that splitting the dose wasn’t helping. That my sleep seems like it’s been getting worse the farther out I take the 2nd dose given my night time symptoms. He thinks as do I that as the 2nd dose was getting closer to when I take my mirtazapine at night that I’m getting over sedated in my sleep. So he suggested I go back slowly, adjusting the time by an hour each day, to taking the full single dose in the morning.

1 hour ago, Pokey449 said:

@Chippy i forgot to mention that I had another session with Horowitz scheduled this morning. I’ve been totally flummoxed with what’s been going on. Feeling like things at night have been getting worse. I just got off with him. I told him I felt like things have been gradually getting worse at night and that splitting the dose wasn’t helping. That my sleep seems like it’s been getting worse the farther out I take the 2nd dose given my night time symptoms. He thinks as do I that as the 2nd dose was getting closer to when I take my mirtazapine at night that I’m getting over sedated in my sleep. So he suggested I go back slowly, adjusting the time by an hour each day, to taking the full single dose in the morning.

Oh well that’s good news Pokey. Ok yes perfect give that a go and maybe that will reverse the worsening for you.

@Chippy As u know I’ve been attempting to split my doxepin dose into 2 half doses 12 hours apart to address what was thought as possible interdose withdrawal from a taking a single full dose given doxepins15hr 1/2 life. I reached the point where I am taking the first 1/2 dose @ 8am and the second 1/2 @ 4pm. I did this split slowly. But things have not been going well. In fact my sxs seemed to be not getting any better, maybe worse. In the past when I was on doxepin I only took it as a single dose and had no interdose issues. But the thinking now is by taking two 1/2 doses, I may be becoming to sedated at night by it being taken closer to my nighttime Mirtazapine dose. This is all so messy & complicated & hard to figure out. It’s hard to know what’s causing what.

Yesterday Horowitz recommended I move things back to a single dose. And to do so relatively slow as well. No more of a change than 1 hour/day which at that rate would take 8 days. I think I may need to go even slower by holding at each time change for 2-3days instead.

I desperately need some stability now. My sleep is the pits now I’m waking multiple x at night and feeling very unwell. Im wearing out and feel like I’m slipping into physical quicksand/ sinking slowly And I really do think my heart is being affected. Horowitz said he’s not worried about me dying when I asked about that risk. But I’m not sure he’s correct given how bad I feel at times. This is very hard on my old body. I find myself either fearing I’m surely going die from this or at other times think it would be a blessing. Some days all I can do is merely exist in my reliner 😢 That’s not living.

Hey @Pokey449 it does sound like moving the dose very slowly back to a single may be good idea from what you are saying. Even if you have to pause on route, hopefully things will get a bit better incrementally as you shift back. I’ve got it crossed this helps.