46 minutes ago, Pokey449 said:

Ok. Sounds like you are saying the cortisol is gets elevated in the night and given our sleep/wake cycles we wake to an existing elevated level of cortisol. It’s not spiking multiple times in the night?

Could be. Obviously no one knows.

48 minutes ago, Pokey449 said:

But I gather you don’t advise that either ????

So you are suggesting adding 2.5mg and taking that at night? I wouldn’t personally do anything. Beta blockers are psychoactive from what I understand. So not a good idea in my opinion.

OK thanks. Ill leave it alone.........I had a long phone conversation with friends yesterday that I hadn't spoken with in some time. They are retired, doing well. Getting ready to spend a month in Scandinavia. After I got done talking with them I reflected on utterly sad I am that there are so many things that I want to do in the years I have left, but can't given the way I feel with all this. And I feel like I'm letting my wife down not being able to do much with her. Ive struggled much of my adult life with anxiety and depression and here I am at 77 feeling stuck in this dark, sad, exhausting rut. Its so sad what these meds have done to all of us here. They wreck lives. But I blame myself more than anyone. That I should have done something different, although I don't know what for sure. I just feel beaten. Guess I better quit whining and get on with my day. Thanks for your help

@skamen Svetla where can I find that letter from Angela Peacock that you reference about cortisol spikes??

Hoping you get some peace and rest today/tonight.

https://www.angiepeacock.com/resources

@Pokey449, go down of the first page and you will see "Letter to Doc".

Svetla

First page of what? Sorry I’m not finding the article anywhere

https://docs.google.com/document/u/0/d/1TlwxEpRWk_K6177V_A_xnfbUUHq2n_ktdeFr3Un4-s/mobilebasic?pli=1

Svetla

@Chippy i believe I’m in a very bad catch 22. That being staying where I’m at is very detrimental to my health but trying to get away from it in a quick manner would be detrimental as well

What’s going on in my sleep is not good!!! Not healthy. In fact I believe it’s threatening my health, maybe my life. I don’t think it’s “garden variety” WD. I think it’s an idiosyncratic affect from the combination of mirtazapine & doxepin. I keep recalling what @Sminismoni told me a while back. That my respiratory drive may being affected. Or it’s affecting my heart. Or both.

I’m waking feeling absolutely awful. It’s very hard to describe. The word toxic comes to mind with pain throughout my body. Groggy, headache, and weird sensations in my left arm 🤔 I could hardly walk when I got up last night. I checked my HR and BP. Both were elevated. Not terribly so but my BP was approaching unhealthy levels. But I don’t know what it or my HR peaked at before awakening. My CPAP #s are good however but whatever is going on wakes me up and I have to stop CPAP for a while to relieve the sxs before going back to sleep. Last night I fell asleep before putting my CPAP mask back on and woke feeling even worse. So CPAP helps mitigate symptoms somewhat which tells me something is in fact going on with my respiration.

Once I’m up for the day the sxs quickly dissipate. In my mind this tells me what’s going on is an idiosyncratic reaction to the two drugs in my system rather than garden variety WD sxs. There’s a bright line between sleep & wakefulness with the sxs. BUT I don’t know what the hell I can do about it. It’s the doxepin i think as it has a bad reputation for side affects.

I have another appointment with Horowitz the 12th I think it is. But I don’t know what even he can do about it either. I’m very worried for my health, my life.

@Chippy Last night was another bad night. I awoke in the wee hours first time and had to remove my CPAP mask because I felt like I couldn’t breathe adequately. Was in great physical discomfort. I woke up with a “physical cloud” over my body of pain and malaise. I had to get up go to my recliner for a while and “ work it off”. I went back to bed, put my Cpap mask back on only to awaken later with it off. I took it off in my sleep and didn’t know it. Probably because I wasn’t breathing well. I again went back to sleep. Awoke about 530. Tossed and turned and fell asleep again w/o CPAP only to awaken about 700 in great physical distress. My first thought was “something cardiopulmonary is happening to me” I felt very stressed and felt I sho his check my BP to see if that told me anything. That something was very wrong. I have I BP cuff on my headstand and put it on and punched the “go” button. My BP was 144/89. NOT GOOD!!! An indicator something not good is going on. My normal waking BP is typically in the 100-110/60-70 range. Nice n low.

The questions that come to mind are is the doxepin suppressing my respiratory drive in my brain as Sminismoni has theorized? Is the doxepin simply making my sleep apnea worse. Sedating me to much, but I don’t feel over sedated when I get up. Is it Affecting my heart. I don’t have any of these symptoms during the day. It’s definitely sleep related. Medically it’s an odd ball, eclectic problem. I don’t know what to do about it or what medical professional to take it to. I’m pretty sure my psych PA would suggest a “ fast taper” off the doxepin and we know what that would look like 😱

I have another appointment with DR. H on 5/13 but I don’t know what even he will have in his bag of tricks.

Do you know if anyone else here has had similar issues I could chat with?? Any advice???

Hey @Pokey449

I’m sorry you had such a bad night. That sounds awful.

I’m not sure what to say mate. If you were reacting badly to the drug would you not feel this way in the day time? Just a thought. So much is not known about these drugs.

I think waiting to speak to dr h is a good idea. See what he thinks and go from there.

Greetings @Chippy et al. I’m pretty sure I’ve figured out what’s going on with me in my sleep. It’s a combination of a couple three things due to the doxepin that I was put on over a year ago & am tapering. In broad general terms the doxepin is the cause for making my sleep apnea worse which in turn is screwing up my sleep and affecting my health in several ways making me feel bad. A perfect storm of combined factors.

1) Doxepin can cause weight gain. That’s definitely happened. It’s been 20+ years since I’ve been this heavy and the weight has come on since starting the doxepin over a year ago. Too much weight in turn can affect your breathing while asleep & cause or make sleep apnea worse 2) AI says doxepin can suppress respiratory drive via its sedative affects. Something proposed by fellow forum member @Sminismoni . Thus suppressed respiratory drive means you’re not optimally breathing and not blowing off enough CO2 which can cause respiratory issues 3) Sleep apneas can spike BP and heart rate. I’ve confirmed this has been happening. Immediately upon awakening I’ve been checking my HR. & BP. Both are being elevated, especially my BP if I’ve fallen asleep without my CPAP mask on. 4) Sleep apneas ( again made worse by the doxepin) can cause a change in blood PH which in turn can cause respiratory acidosis which can cause some of the symptoms I’m awakening with. Especially if I fall back to sleep & again failed to put my CPAP mask back on.

In short the doxepin that my psych PA put me on, that my case was first reviewed by the in house psychopharmacology guru who said “ it will be fine” is……in essence is slowly killing me. Especially if it’s not addressed.

My options to mitigate all this I think are few. I can’t just stop the doxepin & as I go lower in dose tapering it, it will become more sedating & thus affecting my respiration. This begs the question should I go back up in dose??

I have another session with Dr. H on 5/13. I hope he has some options for me to mediate what’s going on. But I’m pretty sure what’s going on at night is due to negative side affects of the doxepin and not WD per se. I’m pretty much symptom free during the day except for the fatigue, headache of a poor nights sleep.

WORRIED!!!!! 🫩

I’m sorry @Pokey449 that your nights continue to be such a challenge for you. It’s hard to comment on your theory. You present it in a well thought out way, but I can’t help but think the simplest option is often the reality, and it’s just wd and your system needing time to stabilise. Lets see what Dr H thinks.

@Pokey449 When you talk with Dr. H on 5/13 ask him if it would be safe to taper doxepin down to just a bit above the 3-6mg range (which is more sedating). If not, would it be safe to taper mirtazipine instead? Certainly there must be some way you can begin getting rid of at least one drug anyway. I'm sorry you're caught in such a very difficult position. ☹️

Thanks @Terry yes I’m going to go over my options with Horowitz. During my last session with him he recommended I stop the doxepin at 30mg and taper the mirtazapine down from 7.5 to 3.75mg and just hold there the remainder of my life. That’s fine and dandy unless it keeps suffocating me in my sleep every night and spiking my BP. I honestly don’t think I can get the doxepin down as low as you suggest. I don’t even want to try if I don’t have to. But your idea of getting off the mirtazapine instead I will run by him. 7.5mg is much closer to zero than 30mg.

Morning @Chippy yesterday during the day I was basically symptom free as I have been for the past few days. Well, except for the fatigue due to a poor nights sleep when I’m not symptom free..But no miserable sxs during the day now. It’s all at night that’s worrisome.

Feeling pretty good last night I went to bed with a positive attitude in hopes of finally getting a good nights sleep. Again, It was not to be. As has been happening I awoke in the wee hours , about 2, feeling very unwell. Tossed and turned and managed to get back to sleep. Awoke again later feeling very unwell. Air starved, nausea, weird pins & needles & spotty pains that came and went in my left upper arm, elbow & hand. Felt weak & sick. I finally got up at 6. Stiff, achy, unsteady & hesitation while walking. Once up, having some coffee/breakfast all symptoms go away and I felt much much better.

Something not good is happening during my sleep. I feel like I’m in a window during the day. But sure not feeling that way at night. I will share with my psych PA Monday who will not have a clue as to what’s happening or what to do about it. Then I see Horowitz 5/13, if I’m still alive by then 🤔😩

Chippy I hope you are correct. That it’s just WD, but I tend to think it’s something idiosyncratic & potentially ominous

How are you, @Pokey449? I read that at least you feel normal during the day...

Svetla

Hi @skamen Svetla: Well I wouldn't say I feel exactly "normal" during the day. At least I am not having the awful WD sxs during the day that I was. I get periods of feeling somewhat normal. Mostly during the day I'm just tired from the lousy sleep the night before. I keep waking up 2-3x hurting all over my body with weird localized pain such as in my left upper arm and wrist this morning. I'm often very groggy, headache, very stiff, hard to walk. Nausea is common. I'm concerned its affecting my heart, but my heart rate is usually within normal range and my BP most of the time is OK. Although the other morning when I checked it it was 144/89. Thats not normal BP for me when sleeping. But this morning it was OK. So I don't know if what's happening in my sleep is a WD thing or an adverse drug affect. I debate this often with @Chippy Doxepin has a bad reputation for some side affects. If the psychopharmacologist who reviewed my case before I started taking it was paying attention he would have advised against me taking it. It shouldn't be taken by people with sleep apnea which I have or a history of AFIB, which I also have, although its in remission.

My sleep medicine doctor wants to do a special sleep study on me to see if he can help discern what's going on. Not sure when that's going to happen. I'm supposed to travel in 3 weeks to go be with my family for a month, but I honestly don't know if I will be up to it. Flying these days is stressful on a good day. I don't relish the thought of collapsing in an airport or being a drag around my family.

So yes, I am better in some respects, but still not doing well overall.

I hope you are getting some relief. You are dealing with a lot. I don't know how you do it. When Im feeling bad I often think of you, and that gives me some hope. Wishing you peace.

Pokey

Morning @Chippy well I can say last night was better. Not great, not perfect but better. I feel human this morning. I’m crossing my fingers the nights will continue to improve, but I know tonight or the next could be miserable all over again.

I see my psych PA today. I shared with him last week through my patient portal how I’ve been feeling. It will be interesting to hear what he thinks about it all. He’s a good guy. Kind & caring and willing to work with me through this taper. Not all psych docs as we know are like that.

I’ll let you know what comes of that. Just wanted to share that today at least I’m feeling much better 🤞🤞🤞🤞🤞

@Pokey449 this is such good news. Thanks for sharing with me.

I do hope you can start to have some better nights more regularly going forwards.

Yes let me know what your Dr says. I’m always interested to hear.

Chippy

@Chippy well Sunday nights better sleep and feeling so much better yesterday didn’t last. Last night was yet another terrible nights sleep. I’ll spare you all the symptoms.Ill just say I feel rotten again this morning. I’m soooooo tired of all this. It’s impossible to plan my life from one day to the next because I never know what the night & day are going to bring. I often think I’m surely going to die from all the stress & fatigue of it all. I’m starting to wish I would and get it over with This is not living. It’s a miserable existence that I don’t want anymore.

2 minutes ago, Pokey449 said:

@Chippy well Sunday nights better sleep and feeling so much better yesterday didn’t last. Last night was yet another terrible nights sleep. I’ll spare you all the symptoms.Ill just say I feel rotten again this morning. I’m soooooo tired of all this. It’s impossible to plan my life from one day to the next because I never know what the night & day are going to bring. I often think I’m surely going to die from all the stress & fatigue of it all. I’m starting to wish I would and get it over with This is not living. It’s a miserable existence that I don’t want anymore.

Sorry mate, yeah it is a tough one. Im still not at a point where I can plan anything. I have days I feel 'better' but they are often very tough by the standards of a 'normal' person. We all empathise with that, tired and that 'over it' feeling. It can be miserable, not gonna sugar coat it. But each day is a step closer to better. Acceptance, learning to float, distract, get through the day and rinse and repeat is all we can do. We are all right there cheering you on bud.

@Chippy ive been holding at my current dose for 75 days. My primary sxs is still poor sleep quality & length. Sxs during the day have abated. How long should expect to keep holding at the current dose. Until my sleep is somewhat better, good or great?? I’m at 29.6mg. My goal is to get to 25mg and call it good and then in time taper VERY SLOWLY off the 7.5mg of mirtazapine or at least down to 3.75mg per Dr H’s suggestion. I see him again next week to review & discuss my doxepin taper.

1 hour ago, Pokey449 said:

@Chippy ive been holding at my current dose for 75 days. My primary sxs is still poor sleep quality & length. Sxs during the day have abated. How long should expect to keep holding at the current dose. Until my sleep is somewhat better, good or great?? I’m at 29.6mg. My goal is to get to 25mg and call it good and then in time taper VERY SLOWLY off the 7.5mg of mirtazapine or at least down to 3.75mg per Dr H’s suggestion. I see him again next week to review & discuss my doxepin taper.

Hey Pokey

I would keep holding till you feel things have really settled down for you. Tapering whilst your sleep is still interrupted will almost certainly make things worse for you again. I agree it would be good to taper the mirt as you are on the lower dose. I would actually just taper mirt first and leave the Doxepin where it is myself but of course this is your choice. You could bring the Doxepin down once the mirt taper is complete.

Just my thoughts.

@Chippy I am pretty much in agreement with you on holding until

things have settled down. The reason I want to get to 25mg on the doxepin is because my current dose of 29.6 is an odd dose to manage. They make a 25mg cap in doxepin. Just easier to take a single cap. Lower dose too.

I forgot to tell you what my psych doc said.about when he talked with a pharmacist about my situation. My psych doc inquired about ADR possibility between doxepin & mirtazapine with the pharmacist. Anyway the pharmacist suggested “ just stop the doxepin like ripping off a bandaide from a scab”

🫩😱 It continues to amaze me how F’ing STUPID many health professionals are about stopping psych meds. Of course I told my psych doc “no way I’m going to do that”. He’s fine with my slowwwww taper and is working cooperatively with me.

3 minutes ago, Pokey449 said:

@Chippy I am pretty much in agreement with you on holding until

things have settled down. The reason I want to get to 25mg on the doxepin is because my current dose of 29.6 is an odd dose to manage. They make a 25mg cap in doxepin. Just easier to take a single cap. Lower dose too.

I forgot to tell you what my psych doc said.about when he talked with a pharmacist about my situation. My psych doc inquired about ADR possibility between doxepin & mirtazapine with the pharmacist. Anyway the pharmacist suggested “ just stop the doxepin like ripping off a bandaide from a scab”

🫩😱 It continues to amaze me how F’ing STUPID many health professionals are about stopping psych meds. Of course I told my psych doc “no way I’m going to do that”. He’s fine with my slowwwww taper and is working cooperatively with me.

Oh my gosh Pokey. It still shocks me when a professional says these things! I know they do but it blows my mind! Glad he’s happy to work with a slow taper.

@Chippy The doxepin/mirtazapine combination in my body is going to kill me!!!

Some time back when I described what kind of symptoms I was having @Sminismoni who is a medical doctor suggested that my respiratory drive in my brain was being suppressed by the doxepin. I shared this with Dr H and he claimed at the time that was not likely happening. Now months later I think he’s wrong. In fact I think that’s exactly what’s happening at night in my sleep. I’ll try to explain, it’s a bit hard to describe.

I’m waking up repeatedly not being able to breath properly with my whole body

in distress. I’m groggy headed, lethargic often have a headache, feel like I just can’t get enough air and have to take my CPAP mask off. Sometimes have weird feeling/pains in my left arm 🤔 Hard to describe exactly. Feel VERY OFF and unwell. When I check my SPO2 it’s often low normal, HR is elevated as is my BP. After I’m awake a bit they return to normal. I get up, stagger to my recliner and deep breathe and self massage until I feel “normal” again. I go back to bed/sleep and wake up later feeling the same.

As I have shared before I have sleep apnea and use CPAP (actually BIPAP) every night. CPAP forces pressurized air into your mouth or nose or both depending on the mask type to keep your airway in your throat open so you can breath freely. It’s correcting a physical obstacle (collapsed airway) during a normal cycle of breathing. But if ones breathing cycle is being interrupted or suppressed by your CPU, your brain, CPAP can’t do anything about that. It can’t tell your brain to “breathe now”

It’s probably more complicated than I understand or can explain but my sleep is being interrupted because I’m not breathing properly and I think it’s due to my brain being to sedated by most likely the doxepin. Problem is I don’t know what to do about it. If it was any other type of medication I would just stop it. But just stopping the doxepin would be another whole different kind of disaster.

I really do think this potentially life threatening if it keeps happening. I’m clueless what to do about. I’m pretty sure none of my doctors would know either. This one of those really idiosyncratic things.