Sounds very distressing @Pokey449 i hope you get support from others who may have had similar issues

Hey @Pokey449

This sounds awful mate. I can see how scary this must be for you and I’m really sorry you’re going through it.

I wish I had more to add apart from what you have said, other than to say if you are worried for you health you should speak to a medical professional.

I agree I’m not sure what they might do other than cold turkey the Doxepin. Certainly waiting to speak with Dr H would be good I think. I’m only hoping this is wd and nothing as worrying as what you are saying bud.

@Chippy @Catbird thanks. I’ve been tapering the doxepin since April 25. These current symptoms, in retrospect, seem like they have been getting very slowly gradually worse. I’m scheduled for an in hospital sleep study June 3 which will hopefully tell me something. Just wish it was sooner. Worried I might be dead in a month. Maybe it’s dose dependent???? Doxepin is more sedating in lower doses. Wonder what would happen if I went back up???

This is affecting every aspect of my life as I know it does many others here.. I F’ing!! hate it!!!

5 minutes ago, Pokey449 said:

This is affecting every aspect of my life as I know it does many others here.. I F’ing!! hate it!!!

You and me both Pokey. Frustrating isn’t it. At best! Thinking of you, and I hope your sleep is better tonight.

@Chippy I think I know what’s going on in my sleep and the doxepin is the culprit. I awoke at 4 am in discomfort. I was still wearing my cpap mask thankfully. My whole body hurt. I ached all over. My head felt thick & groggy. I ached all over but my low back especially. Weird pains in my left arm 🫩 ??? I took my cpap mask off. Got up and staggered out to my recliner. Did some stretches, self massage all over my aching body. Deep breathing made me feel better. Feeling somewhat better I went back to bed and laid there a while waiting for the symptoms to completely go away before putting my cpap mask back on. But I fell asleep without my cpap mask only to awaken about 630 in EXTREME DISCOMFORT. I think I almost died!!!! I was way worse this time without having my cpap mask on.

I think I’m having CENTRAL APNEAS that’s exacerbated by the sedating affects of the doxepin. Central apnea is when your brain fails to tell your respiratory center , that’s in your brain, to breathe. It’s a common complication of opioid use. But can be caused by other sedative meds. I have the classic symptoms of central apnea.

One question is why is it happening to me now as I’ve been on doxepin over a year. I don’t know. Why doesn’t really matter. It’s happening. The question now is what can I do about it??? Ideally removing the sedating medication is the answer but I can’t just stop it?!?!

I have an appointment with Horowitz next week and hope he will have some answers. I need to talk with my sleep medicine doctor as well. I’m pretty what’s happening. The question is what if anything can I do about it. It truly felt life threatening this morning.

I’m very sorry to read this @Pokey449 this is awful. You may well be right. It is very worrisome indeed. I do think comments from Dr H will be good to hear. Also be interested to see if your sleep doctors agrees with you.

Hang in there mate, speak to your doctors and then go from there.

It would be good if the doctors both joined in conversation with you.

What’s happening in my sleep is not good!!! My BP and heart rate are spiking. I awoke this morning, with my CPAP mask on, feeling awful again . So I quickly grabbed my BP cuff & took my BP while I was feeling bad. 140/85. That of and by itself is not dangerous but 1) I don’t know how high it got before waking up. 2) My BP is normally low in the early morning as well as my HR. Earlier in the night I had taken my Cpap mask off and fell back to sleep and awoke later with same awful symptoms. Whatever is happening seems to be independent of whether I’m using my Cpap. I’ve been thinking what’s going is that I’ve been having central apneas. Now I’m not so sure. Maybe it’s really bad cortisol spikes??? And then again maybe something entirely different is happening. If it was an ADR from the doxepin one would think it would occur during waking hours as well. I just know it’s really not healthy and I’m worried it’s going to give me a heart attack or stroke.

I simply don’t know what to do or who tell. I think all my different doctors would just scratch their heads. I’ll share with Horowitz on Wednesday and see what he has to say……if I’m still alive then 🤔🫩🙏🙏

Hey @Pokey449 very sorry to hear how hard your nights are still. I will be very interested to hear what Dr H thinks on Wednesday.

Hi @Chippy Thanks. I’m actually scared to death. Especially being here alone at night. Something not good is happening at night while sleeping. I fear the doxepin is slowly killing me. Some unknown negative combination of things that nobody knows anything about is slowly emerging. Like poison in your drinking water and you don’t know about it until it’s too late.

I hope Horowitz has some insight/advice. But I fear it’s like going to see a specialist about a rare condition for which there is no known viable treatment.

Thinking of you @Pokey449 I’m sorry you feel so worried. It must be a very difficult thing to deal with and on your own too. Fingers crossed things settle soon and or Dr H has some suggestions. I hope this is all WD tbh. The only other option I can see is to start to taper one of your drugs down. Perhaps if things don’t calm down that could be an option. I’d worry you’re not ready for that yet. See what the good Dr thinks.

I did some more googling. Found one discussion that said a mirtazapine-doxepin combination can be dangerous due to possible:

Serotonin syndrome

Cardiovascular affects

Sedative affects.

I’m not having serotonin syndrome but I am having cardiovascular affects

( elevations in BP& HR)

Feeling very sedated at night.

I’ve considered telling my psych provider but I don’t think he’d have a clue what to do.

I’m worried I’m going to get so scared in the night I’ll call EMS. Anxiety only makes all this worse.

13 hours ago, Pokey449 said:

Anxiety only makes all this worse.

I think that is the thing to work on atm, watch the second fear, it makes it worse, be as stoic as you can, just observe the symptoms and float, sounds hard but in reality you can't change or control them, so trying to is pointless and often leads to secondary fear and anxiety.

What I might suggest is, wait till you have spoken to Dr H on Wednesday, but we could always try to reduce one of the drugs a little and see how you respond, the body might tell you something, if you are having a reaction between the two it might welcome a reduction. I would consider Mirt as it is at 7.5mg and perhaps if you can taper that the whole way off, things would be easier with just one drug in the system. I figure spend the tapering cost on focusing on getting down to one drug in your system. I would ignore convience for the minute personally.

Perhaps we can try a micro taper and then you can pause at points, you could try 5% which is -0.375mg, divde that by 30 you get 0.0125mg, so if you could reduce that or 0.01mg per day and see how you respond. You could try a bit faster but I would worry it would be too much for you. See what the good doctor thinks.

@Chippy if I understand correctly you are suggesting I consider tapering the mirtazapine & leaving the doxepin at the awkward dose of 29.6 while tapering off the mirtazapine. And then taper off the mirtazapine with a micro taper= 5% reduction every 30 days. If I understand your math the actual dose per day is very small? If that’s the case by the time you get to a dose of say

3.75 x.05=0.188mg/30=0.00627 mg/ day. That would require precise laboratory equipment to measure a dose that small. Then it gets even tinier & tinier as u go lower. How’s it even possible?? But I will discuss such options with Dr H on Wednesday.

I feel like I need to share that I’m feeling overwhelmed & somewhat hopeless. I’m waking nightly with lots of back pain that makes me hurt all over. I’m struggling with my BIPAP therapy, it’s real pain to manage itself. This taper struggle is awful. I’m alone in a dark house at night with all this missing my family and don’t know if I’m ever going to be well enough to travel to where they are at much less go through a household move to relocate there. I don’t want to be alone anymore It’s all to much at times and i catch myself losing hope.

15 minutes ago, Pokey449 said:

@Chippy if I understand correctly you are suggesting I consider tapering the mirtazapine & leaving the doxepin at the awkward dose of 29.6 while tapering off the mirtazapine. And then taper off the mirtazapine with a micro taper= 5% reduction every 30 days. If I understand your math the actual dose per day is very small? If that’s the case by the time you get to a dose of say

3.75 x.05=0.188mg/30=0.00627 mg/ day.

That is correct mate. Some people keep the reduction going for a while, so reduce 0.01mg and not recalculate for some time at least. Obviously that means you are tapering quicker, but that can be ok for some as a Micro Taper can be smoother than a cut and hold for some.

16 minutes ago, Pokey449 said:

That would require precise laboratory equipment to measure a dose that small. Then it gets even tinier & tinier as u go lower. How’s it even possible?? But I will discuss such options with Dr H on Wednesday.

You can make up a more dilute version of your drug to make it possible. I can help with this if needs be.

17 minutes ago, Pokey449 said:

I feel like I need to share that I’m feeling overwhelmed & somewhat hopeless. I

Thats ok mate, you should share.

18 minutes ago, Pokey449 said:

I’m waking nightly with lots of back pain that makes me hurt all over. I’m struggling with my BIPAP therapy, it’s real pain to manage itself. This taper struggle is awful. I’m alone in a dark house at night with all this missing my family and don’t know if I’m ever going to be well enough to travel to where they are at much less go through a household move to relocate there. I don’t want to be alone anymore It’s all to much at times and i catch myself losing hope.

Im sorry to hear mate. I have that back pain back today that I got in Dec. I did it yesterday somehow and its worse than before. It is better today than yesterday but it is still quite uncomfortable, add that to WD, not great!

You have a lot to juggle there, its not nice when you have to battle more than one issue at once. I feel you.

I do hope you can find a way to be with your family mate, I spend quite a bit of time atm on my own, but I do like having my wife and son around in the evenings and weekends and so on. Nice to see a friendly face. I can imagine it is quite hard for you. You are doing well, this isn't an easy thing to navigate.

Thanks @Chippy your help with details and caring means a lot.

3 minutes ago, Pokey449 said:

Thanks @Chippy your help with details and caring means a lot.

Pleasure mate

Hi @Chippy I had a terrible night last night. Awoke multiple times in pain, creepy crawly feeling Akathisia, nausea, headache. Struggled both with & without my BIPAP. Could hardly walk when I’d get up to go to my recliner or to pee. When I checked a couple times about 6 am my BP was elevated(140s/80s) which normally I have low BP in the morning after waking. I have no idea how high it got but i suspect higher than is healthy.

From a tapering perspective I’m doing ok during the day( except for the fatigue from a bad night) but something not good is happening at night

I’m literally exhausted today. Don’t think I’ll get very far from the recliner or bed today. Glad I have a ZOOM appointment with HOROWITZ tomorrow.

4 minutes ago, Pokey449 said:

Hi @Chippy I had a terrible night last night. Awoke multiple times in pain, creepy crawly feeling Akathisia, nausea, headache. Struggled both with & without my BIPAP. Could hardly walk when I’d get up to go to my recliner or to pee. When I checked a couple times about 6 am my BP was elevated(140s/80s) which normally I have low BP in the morning after waking. I have no idea how high it got but i suspect higher than is healthy.

From a tapering perspective I’m doing ok during the day( except for the fatigue from a bad night) but something not good is happening at night

I’m literally exhausted today. Don’t think I’ll get very far from the recliner or bed today. Glad I have a ZOOM appointment with HOROWITZ tomorrow.

Hey Pokey. Sorry about your night. Awful the grind of all this I know. Like ground hog day or something isn’t it. It all sounds wd like to me from what you described there. You seem ok in the day which is good, you would think if you were having adverse reaction/interactions to the drugs you would see some sign of it in the day too. But then again to have no wd symptoms in the day time either apart from the fatigue which is obviously down to the poor sleep. I do think it’s one or the other knowing what we know about how these drugs mess with sleep. A tricky one to work out. I lean to thinking it’s more likely wd related but am open to the idea there is more to it of course. See what Dr H says tomorrow.

@Chippy i said my day times have gone away. Well that was true until today. Feeling pretty terrible this afternoon. I asked myself did I miss a dose? Taking my doses is so automatic that I sometimes do it without really thinking about it. Often thinking about something else at the time and then I have to remind myself to pay attention to what I’m doing so I take the correct amount at the correct time. I have a dose reminder app on my phone too that I have to check off my doses when they are due. Anyway something was really off last night and today. I’m feeling pretty s****y this afternoon.

12 hours ago, Pokey449 said:

@Chippy i said my day times have gone away. Well that was true until today. Feeling pretty terrible this afternoon. I asked myself did I miss a dose? Taking my doses is so automatic that I sometimes do it without really thinking about it. Often thinking about something else at the time and then I have to remind myself to pay attention to what I’m doing so I take the correct amount at the correct time. I have a dose reminder app on my phone too that I have to check off my doses when they are due. Anyway something was really off last night and today. I’m feeling pretty s****y this afternoon.

Oh no, sorry to see that. How was it symptoms wise yesterday? These things happen, but yes do everything you can to not miss or move doses, you need that stablity for sure.

I’m 95% sure I didn’t miss a dose. I have reminders on my phone to take & confirm taking each dose plus a couple visual cues as reminders/proof I took my doses. It’s so easy to automatically take a dose and be thinking about something else entirely and then wonder later “ did I take my 8:00 dose”?

BUT my symptoms this morning waking up 2x & then finally a 3rd time were/are not good. Physiologically whatever is happening is not healthy. Very hard to describe the sxs But cause me to conjure up terms of fear in my head like stroke, heart attack, sudden death etc. Then the sxs wear off and I’m feeling much better.

I don’t know what’s happening but it’s not good in any case. I see Dr H in 45 minutes.

4 minutes ago, Pokey449 said:

I’m 95% sure I didn’t miss a dose

That’s good.

4 minutes ago, Pokey449 said:

BUT my symptoms this morning waking up 2x & then finally a 3rd time were/are not good. Physiologically whatever is happening is not healthy. Very hard to describe the sxs But cause me to conjure up terms of fear in my head like stroke, heart attack, sudden death etc. Then the sxs wear off and I’m feeling much better.

Awful Pokey. Wish they would just finally subside for you.

5 minutes ago, Pokey449 said:

see Dr H in 45 minutes.

Let us know how you get on.

@Chippy I just got off line with Horowitz. He's of the mind its all WD related, but thought it would be OK to consult cardiology & pulmonary/sleep medicine if I wanted to. As I told him I had a recent echocardiogram and all was well with that and that Im having a BIPAP titration study 6/3 which should tell me if anything is going on from that perspective. But his main recommendation was:

1)to continue to spread my2 daily doxepin doses (1/2 dose each time) out further with the goal of getting them 12hrs apart. 8am & 8pm

2)He also suggested I do the same with my beta blocker that I have been taking in the morning for 15 years. Thinking maybe that may be playing a role with my night time symptoms. spreading it would cause no harm

3) Plan on tapering the doxepin, once I settle down which I hopefully will, to 25mg(but wait until I am good and stable to resume the taper) and stay there until they put me 6ft under, which some days I think may be soon :o( After solidly stable from that, possibly taper the mirtazapine to 3.75mg just to reduce the dose and stay there.

He feels I am the victim of irresponsible doctors putting me back on this shit and the process of KINDLING. That Ive been on one of these meds one to many times and thats why getting off now is so much much more difficult. BUT I should have know better. Thats my utter stupidity!!!

6 minutes ago, Pokey449 said:

feels I am the victim of irresponsible doctors putting me back on this shit and the process of KINDLING. That Ive been on one of these meds one to many times and thats why getting off now is so much much more difficult. BUT I should have know better. Thats my utter stupidity!!!

I agree with him Pokey.

Perhaps next step is to carefully move your split dose of Doxepin as he suggested.

I think moving your beta blocker sounds like a good idea. I do think interdose wd can be an issue for more people than realise it.