1 hour ago, Pokey449 said:

I am coming to the conclusion that my respiration & my CPAP therapy is being negatively affected by the doxepin in my body. And there's not a damned thing I can do about it. I cant just stop taking it like I would if it was some other drug. I go to bed feeling OK, I think I'm in a window now. I go to sleep just fine. But I awaken later in the night feeling pretty rotten. Hard to describe the sxs: whole body pain & stiffness, thick groggy headed feeling, often with a headache, somewhat woozy. Feels like my breathing just isn't right despite my SPO2 saying 94-98% upon awakening. HR is normal. I get up, am unsteady, stiff and exhausted on my feet only to start to feel better after I'm up moving and have some breakfast. I don't know how to change what's happening. I figure its either going to get better on its own or I'm not going to wake up some morning.

Sorry Pokey. Hopefully given some time things will settle down.

Do you ever have any day time symptoms apart from feeling tired from poor sleep?

Morning (here) @Chippy I

survived the night weather-wise. They were forecasting severe thunderstorms & tornadoes for here last night. Woke to a sunny calm morning with a roof still over my head 🙏😂

But I awoke feeling absolutely terrible. Where to begin??

Late yesterday I got the results of the home sleep study that I did Monday night. Bottom line: my sleep apnea has gotten considerably worse. I lay the blame on the doxepin which has caused increased weight gain and it’s negative affect on my respiratory drive as suggested by @Sminismoni The report states I need to have some follow up tests for adjusting my Cpap. But I’m not sure what that would be as my daily CPAP report from last night said it did a great job controlling my apnea.

But I awoke feeling terrible. Hard to describe. Painful torpor is the best I can come up with. Profound unease. I think my whole body was either oxygen starved or was overloaded with VO2. Stiff & unsteady on my feet to the point I can hardly walk + agonizing whole body pain. Again I get up, move, have breakfast and much of it dissipates. Still feel exhausted & S***y!!

To answer your question I’m not really having much of any other symptoms during my waking hours. Daytime is pretty much symptom free except for the excessive fatigue & malaise of the bad nights sleep.

I’m pretty sure the doxepin is suppressing my breathing past the point that CPAP can accommodate. I think what’s going on is past the purview of most doctors. It’s a very idiosyncratic situation which they can’t recognize nor know anything to do about it. I suspect they’d suggest just stop the doxepin but we know how devastating just stopping would be.

My own research has found that doxepin should not be given to anyone with a history of sleep apnea or AFib. That’s me. My psych doc knew this. I’m incredibly angry at him due to his malfeasance as a doctor and at myself. I should have done more research before taking the stuff.

I feel I’m in a catch 22nand there’s no way out of this misery. The lower I go on the doxepin the more sedating it becomes. The ONLY options I see is get to 25 mg of the doxepin, stop there and taper the mirtazapine, which I think will still be a prolonged misery. Or go back up to 50mg ( less sedation ) with the doxepin & taper the mirtazapine??? Either way there’s no good options. My fear that this is going to finally wear me out and kill me will solve it too 😩

11 minutes ago, Pokey449 said:

Morning (here) @Chippy I

survived the night weather-wise. They were forecasting severe thunderstorms & tornadoes for here last night. Woke to a sunny calm morning with a roof still over my head 🙏😂

This is good to hear!! 😅

11 minutes ago, Pokey449 said:

The report states I need to have some follow up tests for adjusting my Cpap. But I’m not sure what that would be as my daily CPAP report from last night said it did a great job controlling my apnea.

Perhaps this is the next step.

12 minutes ago, Pokey449 said:

I feel I’m in a catch 22nand there’s no way out of this misery. The lower I go on the doxepin the more sedating it becomes. The ONLY options I see is get to 25 mg of the doxepin, stop there and taper the mirtazapine, which I think will still be a prolonged misery. Or go back up to 50mg ( less sedation ) with the doxepin & taper the mirtazapine??? Either way there’s no good options. My fear that this is going to finally wear me out and kill me will solve it too 😩

I’m not sure what the answer is here Pokey. I’ll give it some thought too. You certainly want to be stable before you taper. Following up on the sleep study, and any suggestions to adjustments the doctors think, would be a good start, in the mean time.

Certainly getting one of your drugs gone would be good. Maybe you can micro taper the Doxepin very very slowly and get off that way. Let’s deal with that, once your doctors have adjusted as they see fit, and you’ve had some more time to stablise.

Good you don’t have any other Wd symptoms.

@Chippy i don’t think I’m over exaggerating when I say what keeps waking me up each night, whether I’m using my CPAP or not, is warning me that what’s going in my sleep may be developing into something that is potentially life threatening.

At a minimum it’s not good for my health & wellbeing.

I wake up in great distress. It’s very hard to describe. I’ll feel very unwell. Major grogginess. Whole body pain & stiffness. Often, but not always, headache & nausea. I can hardly walk when I get up. I feel very out of sorts. But what concerns me the most is aching vague points of pain in my left arm & hand. I can’t tell if that’s due to my left shoulder bursitis/tendinitis or is it my heart that’s being affected.

After I’m awake the symptoms dissipate leaving me anxious & exhausted. If I fall back to sleep I awaken later all with the same symptoms.

Thing is I don’t know what to do with all this. Tell one of my doctors? Which one given it’s so odd and hard to directly point to anything as a cause. I think it’s an ADR from the doxepin in my system. So if it is there’s not a lot that can be done. I can’t just stop it. I’m

Not sure I can even taper off the do all the way as it becomes more sedating the lower the dose. It’s a pure antihistamine at 25mg & below.

I think I’m Between a big rock & a hard spot with no good options. Im scared.

3 minutes ago, Pokey449 said:

i don’t think I’m over exaggerating when I say what keeps waking me up each night, whether I’m using my CPAP or not, is warning me that what’s going in my sleep may be developing into something that is potentially life threatening.

Im sorry to hear mate. That sounds very troubling indeed.

4 minutes ago, Pokey449 said:

I wake up in great distress. It’s very hard to describe. I’ll feel very unwell. Major grogginess. Whole body pain & stiffness. Often, but not always, headache & nausea. I can hardly walk when I get up. I feel very out of sorts. But what concerns me the most is aching vague points of pain in my left arm & hand. I can’t tell if that’s due to my left shoulder bursitis/tendinitis or is it my heart that’s being affected.

This isn't good. It is always worth being checked over by a doctor, to make sure there isn't any other issues going on?

5 minutes ago, Pokey449 said:

After I’m awake the symptoms dissipate leaving me anxious & exhausted. If I fall back to sleep I awaken later all with the same symptoms.

Thing is I don’t know what to do with all this. Tell one of my doctors? Which one given it’s so odd and hard to directly point to anything as a cause. I think it’s an ADR from the doxepin in my system. So if it is there’s not a lot that can be done. I can’t just stop it.

It is possible. I would think though, you would have issues in the day time if your body was rejecting/reacting the drug, not just at night.

6 minutes ago, Pokey449 said:

Not sure I can even taper off the do all the way as it becomes more sedating the lower the dose. It’s a pure antihistamine at 25mg & below.

I think I’m Between a big rock & a hard spot with no good options. Im scared.

If you think it is an interaction between the two drugs, you could taper Mirtazapine instead, quicker to get off that in theory as you are on a lower dose. If it is Doxepin, then perhaps that is the one to touch reduce.

I appreciate your concern about the sedation though.

One way to approach it would be in tiny steps, often it can be a much smoother way down, and can just give the brain a small amount to adjust to, but daily.

Im not 100% convinced this isn't WD myself, so Im unsure doing anything right now, is the correct choice.

Do you think anything has settled down since you have been holding?

10 minutes ago, Chippy said:

One way to approach it would be in tiny steps, often it can be a much smoother way down, and can just give the brain a small amount to adjust to, but daily.

Im not 100% convinced this isn't WD myself, so Im unsure doing anything right now, is the correct choice.

Do you think anything has settled down since you have been holding?

@Chippy Im not clear on exactly what you are saying here. Are you saying do a micro-taper but then later suggesting don’t do anything and hold??

To answer your final question. Yes I’ve had improvement during the day. Not having the day time WD sxs that I was having earlier. Just the nighttime scary stuff.

@Pokey449 , if this can reassure you, I wake up with this distress feeling every morning, in full terror and agony. And all the night the cortisol spikes don't stop. Feeling of dying. I also have these legs and arms aches the night. It is awful, unbearable. I am sure that for me it is the result of my brain injury caused by the hellish drugs. Our CNS is so so sensitized. I have been ADs free from one month now, and the Hell is full. But we have to hope that our brain will reach homeostasis in time, it is not possible that this situation lasts forever, nothing lasts forever.

2 minutes ago, Pokey449 said:

To answer your final question. Yes I’ve had improvement during the day. Not having the day time WD sxs that I was having earlier. Just the nighttime scary stuff.

This is very good mate.

2 minutes ago, Pokey449 said:

@Chippy Im not clear on exactly what you are saying here. Are you saying do a micro-taper but then later suggesting don’t do anything and hold??

I’m saying. I’m hearing your concerns, and making suggestions how you could reduce your dose of one of your drugs to help.

However I’m not convinced this isn’t WD tbh. If that’s the case. You should hold. Don’t want to rock the boat.

I am a bit concerned you’re over thinking the symptoms you are having and talking yourself into it being something else.

Perhaps you should continue to hold and observe if anything improves further.

4 minutes ago, skamen said:

@Pokey449 , if this can reassure you, I wake up with this distress feeling every morning, in full terror and agony. And all the night the cortisol spikes don't stop. Feeling of dying. I also have these legs and arms aches the night. It is awful, unbearable. I am sure that for me it is the result of my brain injury caused by the hellish drugs. Our CNS is so so sensitized. I have been ADs free from one month now, and the Hell is full. But we have to hope that our brain will reach homeostasis in time, it is not possible that this situation lasts forever, nothing lasts forever.

I’m very sorry Svetla. I think about you often. You are right, nothing lasts forever.

@Pokey449 do you see, your symptoms do sound like wd/injury….

Thank you, @Chippy . I read all your posts, you are an incredible person, thank you to be here. @Pokey449 , I have also the same nausea as you. Our stomach is linked to the brain...

Svetla

5 minutes ago, skamen said:

Thank you, @Chippy . I read all your posts, you are an incredible person, thank you to be here. @Pokey449 , I have also the same nausea as you. Our stomach is linked to the brain...

Svetla

Bless you Svelta. It’s not me that is incredible, but kind of you to say.

@skamen @Chippy thsnks for your kind input & support. I will admit I may be overthinking/worrying about my sxs But They scare the hell out of me. I do have the thought that if this does in fact kill me I take some comfort in the fact that I won’t have to deal with this horror any longer 🤔😩😢

Just now, Pokey449 said:

@skamen @Chippy thsnks for your kind input & support. I will admit I may be overthinking/worrying about my sxs But They scare the hell out of me. I do have the thought that if this does in fact kill me I take some comfort in the fact that I won’t have to deal with this horror any longer 🤔😩😢

I know it can be awful. And I’m so very sorry for that. What I want is to avoid trying to taper, making it worse, then ending up back to square one. We need you as stable as possible. Then we can see about what you do next.

These sleep/cortisol symptoms can be very persistent. More time to get them gone. But the progress you have made has been good I think.

Yes day sxs have gotten lots better except today im feeling pretty awful after last nights misery. I’m spent most of my day today stretched out on my recliner. I don’t

feel capable of exercising today, I just want to survive. 🫩

@Chippy @skamen I really don’t think it’s cortisol spikes that’s waking me up at night in misery. Or if it is my symptoms are atypical from all the descriptions of cortisol spikes on Google.

When your cortisol spikes it typically increases heart rate & breathing rate. A fight or flight kind of response. My CPAP app & my smart watch consistently is showing a HR of mid 50s-low 60s during the night. My breathing rate last night averaged 10 Brpm which is nice a low. I do get the occasional HR spike just before I wake up but shortly after waking I check my HR and it’s in the mid to low 60s.

My symptoms are weird to say the least. I wake hurting all over, like I’m coming out of a coma. Weird whole body pain & stiffness. It does not appear to be due to sleep apnea either as those #s are good too. I don’t know what the hell is happening exactly. It must be due to WD but it’s hard to pinpoint exactly what’s happening. But I don’t think it’s typical cortisol spikes like so many people here experience. Thankfully the sxs I was having during the day seem to have abated. As we know there are a host of weird hard to explain symptoms associated with WD. Maybe I’m one of those cases 🤔

@Pokey449, there are my symptoms caused by the cortisol spikes: increased heart palpitations, sweats, awful depression, chest crushing, increased breathing, feeling of dying, terror. Hope you are not experiencing this Hell.

Svetla

12 minutes ago, Pokey449 said:

Maybe I’m one of those cases 🤔

Yes I think we are all just one of those cases mate.

There are so many things we share with each other, yet we are all different, and often say, ‘I’m an outlier’, but that can’t be true, not for everyone who says it!

The reality is wd can affect every part of our system, nothing can’t be touch by it, and we all present in differing ways.

Oh fun!

@Chippy yeh, loads of “fun” isn’t it?? What continues to amaze me is how many doctors have no understanding of what these kinds of drugs do to people and how difficult it is to get off them. They know what alcohol cocaine heroine and similar drugs do to people & how hard it can be to detox and stay away from them but they’re clueless about the misery that ADs and benzos cause.

I have followup question to my previous post. It’s my understanding I need to be good and stable before resuming my taper. What if the symptoms that I’ve been having at night that I keep complaining about never go away??

4 minutes ago, Pokey449 said:

@Chippy yeh, loads of “fun” isn’t it?? What continues to amaze me is how many doctors have no understanding of what these kinds of drugs do to people and how difficult it is to get off them. They know what alcohol cocaine heroine and similar drugs do to people & how hard it can be to detox and stay away from them but they’re clueless about the misery that ADs and benzos cause.

I have followup question to my previous post. It’s my understanding I need to be good and stable before resuming my taper. What if the symptoms that I’ve been having at night that I keep complaining about never go away??

I know. It’s frustrating isn’t it!

I’d try not to think about what happens next and just focus on one day at a time. I really believe a long hold will give you some good results. Time will see how it plays out. From there if you want to taper I have some ideas of how to approach it more carefully, but for now I’d stick with that hold.

Pokey-

Do you mind telling me about splitting your dose? I think Dr. Horowitz suggested that. He also mentioned it to me (after I’m more stable), but I’m wondering how that is going for you.

@Finni yes I split my dose because Doxepin has a 1/2 life of about 15-17 hours which I thought & Horowitz concurred was causing me go have interdose withdrawal symptoms. When I split it I was at 29.6mg. I’m taking a liquid form of the doxepin which makes it easy to split the dose. No weighing required. I split the dose into 14mg at 8am and 15.6mg. I gradually started moving the 2nd 1/2,of the dose (the 15.6mg) 30 minutes later every 3-4 days until I got to 2pm and held there for some time. I’m moving that second later now by 30minutes every few days until I reach 5 or 6 pm. Having yo take a dose mid afternoon is very inconvenient if you have things you have to do that time of day. I’ve been holding at a total dose of 29.6mg for 60!days now. My day time sxs have improved a lot. It’s the broken sleep and awful symptoms at night that have not abated yet. Fingers crossed they will soon.

Are you doing liquid mirtazapine or weighing your doses. Mirtazapine can easily compounded into liquid. It will make your dosing life so much simpler especially when you get down to really low doses.

Hope that helped.

Take care

Pokey

Thank you!

I take mirtazapine at night so I would be moving part of the dose earlier and earlier in the day

I’m still filing and weighing.

I’m glad to hear that at least your day time symptoms are better ☀️

I will talk to Dr Horowitz on Tuesday about my worsening symptoms and see what he thinks!

8 hours ago, Pokey449 said:

@Chippy @skamen I really don’t think it’s cortisol spikes that’s waking me up at night in misery. Or if it is my symptoms are atypical from all the descriptions of cortisol spikes on Google.

When your cortisol spikes it typically increases heart rate & breathing rate. A fight or flight kind of response. My CPAP app & my smart watch consistently is showing a HR of mid 50s-low 60s during the night. My breathing rate last night averaged 10 Brpm which is nice a low. I do get the occasional HR spike just before I wake up but shortly after waking I check my HR and it’s in the mid to low 60s.

My symptoms are weird to say the least. I wake hurting all over, like I’m coming out of a coma. Weird whole body pain & stiffness. It does not appear to be due to sleep apnea either as those #s are good too. I don’t know what the hell is happening exactly. It must be due to WD but it’s hard to pinpoint exactly what’s happening. But I don’t think it’s typical cortisol spikes like so many people here experience. Thankfully the sxs I was having during the day seem to have abated. As we know there are a host of weird hard to explain symptoms associated with WD. Maybe I’m one of those cases 🤔

I've had random night time awakenings too and my heart rate and breathing were normal every time. So it's probably the withdrawal.

7 hours ago, Pokey449 said:

yeh, loads of “fun” isn’t it?? What continues to amaze me is how many doctors have no understanding of what these kinds of drugs do to people and how difficult it is to get off them. They know what alcohol cocaine heroine and similar drugs do to people & how hard it can be to detox and stay away from them but they’re clueless about the misery that ADs and benzos cause.

I have followup question to my previous post. It’s my understanding I need to be good and stable before resuming my taper. What if the symptoms that I’ve been having at night that I keep complaining about never go away??

Have you been getting any days without the night time awakenings? Because if so then it's probably withdrawal again. I think withdrawal goes away for everyone eventually but it takes years in the worst cases like mine.

@EDP6893 Early on I had nights without these awakenings. Seems like they’ve gradually crept into my night and the sxs that go with the awakenings have gotten progressively worse. I worry it my be affecting my heart.

@Finni when you meet with Horowitz ask him about mirtazapines 1/2 life. I thought it was 20-40 hrs averaging 30 which shouldn’t cause interdose WD issues I wouldn’t think. I’m on it too but I’m not tapering it.