I don't know what the right move is.

You've increased the dose of both this year. Did you notice a significant change in symptoms when doing either of these dose increases?

16 hours ago, Pokey449 said:

My smart watch reported this morning that I got 7hrs of sleep last night with a sleep score of 86. 2hrs of REM and an hour of deep sleep. I should have felt pretty good this morning when I finally got up. But I didn’t.

Im so sorry to read Pokey, yes this can happen. I have this a lot. Sleep is really complex and being unconscious isn't enough, these drugs really disrupt sleep architecture.

16 hours ago, Pokey449 said:

Got up, had breakfast continuing to feel bad and then finally started feeling better

about 8 but not like I’d should have after 7 hrs of sleep.

Glad you perked up a bit, Im a bit like that today. Slept ok, feel kinda exhausted,

16 hours ago, Pokey449 said:

headache, dry mouth, nausea, whole body pain, weird spotty pain & tingling in my left shoulder, arm & hand, overall malaise

All of these are typical WD symptoms, obviously you can get them from other conditions too

16 hours ago, Pokey449 said:

In fact since my sxs are so episodic (occurring almost exclusively in the wee hours & lingering into the morning, but then easing after getting up) it reinforces my belief they are sxs due to an adverse drug affect.

It might be just that WD is now effecting mainly your sleep, but you wake with a headache, dry mouth and feeling sick, this could be the poor sleep or it could be WD nervous system dysregulation in general thats caused it, it is normal to start to feel better as the day goes on.

16 hours ago, Pokey449 said:

I’m increasingly of the opinion the Mirt/doxepin combo is over sedating me at night making my sleep apnea worse, especially when I’m off my cpap and potentially/likely affecting my heart in a negative way.

Question now is: what can I do about it??

I continue believe it’s more than garden variety WD that I’m experiencing.

I fear that my health, maybe even my life is at risk.

I know you are concerned about this, but equally as much as this could be happening, it could be not. Dr H doesn't seem concerned by it from what you have said, and given some time your body hopefully will settle to the current doses without any further changes. You need a consistent plan of attack. You have paid Dr H lots of money for his advice. I would try to put your worries out of your mind for the minute at least, and commit to holding your dose as he suggested. Trying to taper at this point would be very risky as would stopping anything abruptly. So there isn't really an option there from what I can see. Worrying about any reaction from my perspective doesn't really serve you currently and only feeds your anxiety about your health.

If after a really decent long hold of 6 months or so at these doses and times you feel things are not improving you could maybe talk to Dr H about trying to taper one drug down and see if that helps with the reactions, but even then some need to hold for 12-18 months to stablise. It happens like that sometimes. Those poor folk would have felt lost for a long long time worrying it wasn't working and then out of the blue it did.

Hope you feel better today mate

@Chippy Thanks for your words of advice, kindness & caring….. Ugghhh!!! another night of fractured sleep. Same repeated story. I felt awful upon awakening & after getting up. Feel plain sick & weak and not feeling much better after breakfast. I’m physically slowly losing ground getting more tired & weaker by the day it seems. feel like I’m slowly sinking down into a dark hole and the escape hatch is closing behind me. I’m both afraid I’m going to die & getting to the point I’m ready to do so. There are things in life worse than dying and this drug induced misery is one of them.

So It’s looking like it’s going to be another useless lonely day of doing nothing but drinking decaf or tea and surfing the couch. This is no way to live. It’s only existing. Getting harder by the day for me to accept.

I’m still slowly moving both 1/2 doses towards a full single dose 1/2 doses are now at 10am & Noon. Noon is the final goal. I’ll hold there for extended period & hope things ease but I honestly don’t know how much more of this misery I can take.

@Pokey449 sorry mate I empathise, tatty day for me too, just plodding my way through it. You are capable of dealing with more than you think. Acceptance is everything, I hate how I feel, it really does not feel health if I am honest, but I don't make this happen to me, and I can't do anything to improve it apart from give it time, so I try not to think of me getting worse and worse due to the length of time passing, and try to think of it as getting better, even though it can sometimes feel like ground hog day. The body is amazing and our are working hard for us all, looking for balance. Gotta keep the faith. 👊

@Chippy today is a really bad day. All I’m capable of today is being a couch potato. Literally all I’ve done this morning is go from recliner, to couch, to bed, back to recliner. I don’t feel like or have the inclination to want to do anything. Hopefully after the 2nd 1/2 of my dose things will pick up and I can at least take a walk. This is not living. Today I’m no more than a big chunk of inactive protoplasm ☹️

14 hours ago, Pokey449 said:

@Chippy today is a really bad day. All I’m capable of today is being a couch potato. Literally all I’ve done this morning is go from recliner, to couch, to bed, back to recliner. I don’t feel like or have the inclination to want to do anything. Hopefully after the 2nd 1/2 of my dose things will pick up and I can at least take a walk. This is not living. Today I’m no more than a big chunk of inactive protoplasm ☹️

@Pokey449 So sorry to read mate! I feel you, some days Im the same, can't really do much, just plod through it to the other side. Hope today is better for you.

Morning @Chippy it’s night & day between how I felt yesterday & today. Feel almost human today. I plan to make it to the health club for a couple miles on the treadmill.

That said I woke up about 330 again in physical distress. Same sxs of very groggy headed, very stiff & lethargic, feeling like I wasn’t getting enough air. Had to take my cpap mask off and do some deep breathing, stretching & self massage. Had to give it time to feel better. Again fell asleep without my cpap mask on. Awoke at 6:00 with the same but exaggerated sxs. Finally got up about 630, had breakfast and feel relatively normal at the moment.

I continue to be convinced the sxs I’m waking up with are do to an adverse drug affect rather than WD per se. I think one or both drugs in combination are suppressing my respiration at night waking me up in distress with above sxs. After waking, doing some deep breathing for a while , self massage etc the sxs wear off. I go back to sleep and am awakened later with the same sxs. The sxs dissipate after being up for a while. Without going into a long drawn out description I’ll just say I think my heart is being affected as well too.

This week I see a new heart doc who specializes in heart rhythms. I’m going to share my story of what’s going on & ask to be put on a 24/7 monitor to see if that tells us anything.

The thing is even if my respiration is being suppressed, which in turn could affect my heart, I don’t know what the hell can be done about it. Any other kind of medication one would just shop it. As we know that can’t be done with this class of medications.

Hopefully though now that I’m getting closer to merging my two 1/2 doses things will settle a bit.

Pokey

Ps. I see England is to play Croatia Wednesday. Fingers X’d for your team.

Our guys beat Paraguay 👍

@Pokey449 great news you had a better night and I hope you enjoyed your trip to the health club. So pleased you felt normal in the day. A welcome break. :)

Will be interesting to see what the heart monitor shows you.

I don't follow the football really, used to a little but not at all these days. But having said that, hopefully England did ok! Be a good reason to display flags outside our homes for once rather than this non-sense that seems to be happening currently.

Hope you get some good rest again tonight.

Same misery as usual last night. Awoke at 2am in great distress. The most god awful feeling. My whole body engulfed in pain, stiff, feel sick all over, a need to take some deep breaths despite my pulse oximeter saying my O2 is ok. The EKG on my smart watch is not showing anything scary but it all feels scary. Very bizarre and VERY uncomfortable. Happening now both with/without cpap. Seems to be getting more intense. I get up, can barely walk. Go to my recliner, back to bed. In time sxs wear off. I go back to sleep and awaken later with all the same miserable sxs that then wear off after im up a while.

Still can’t discern if it’s WD sxs or due to an adverse drug affect. I continue to think the latter. If so, what the hell to do about it ??????????

Hi Pokey,

Did you discuss micro-tapering the mirtazipine with Dr. Horowitz? Could lowering the dose of mirtzapine in tiny increments, over time, improve the interaction between it and the doxepin? I know you don't want a prolonged taper, but I feel so bad seeing you "stuck" in your current situation. 😢

Terry

Hi @Terry no I have not discussed tapering the mirtazapine with Horowitz. I have a 10 minute voice mail session with him next week & can ask him about that

Yes I think I’m currently stuck in somewhat of a pickle. Im waking every night at least 2x in major distress. And it’s wearing me down. As I tell Chipoy I feel like I’m in slow quick sand sinking a bit deeper every day. Something needs to change or I honestly don’t think I’m going to make it. Something has to give.

Sorry you had a bad night @Pokey449 hope you sleep better tonight.

4 hours ago, Pokey449 said:

Something needs to change or I honestly don’t think I’m going to make it. Something has to give.

As I have said before, the thing that needs to change is the mindset. You are still stuck in the idea that you can proactively improve this, and I think that isn't the right idea. So far that has had you shift your dose around, which whilst a potentially sensible thing to do, has seemingly caused more issues for you, so now you are shifting it around again to return to how it was before or close to. The whole process will have been destablising and not have helped. So you see looking for the next tweak will likley do the same thing.

Trying to imporve things by being proactive is just resising and resisting is the opposite of accepting, it causes more suffering for the same level of symptoms.

4 hours ago, Pokey449 said:

I have not discussed tapering the mirtazapine with Horowitz. I have a 10 minute voice mail session with him next week & can ask him about that

By all means see what Dr H thinks, but I suspect this wouldn't be a good idea, although it is an idea, I think it will just make your symptoms worse imo but of course I could be wrong.

@Chippy im getting progressively worse & worse. I’m waking with what I guess are cortisol spikes?? God awful!!! Restless, waves of a miserable creepy crawly feeling making me draw my body up into a ball and shiver in misery. Nausea. Headache. Feeling like I’m going to die, wishing I would to be free of the misery.

As you know I have been taking my daily doxepin dose in 2 half doses. I’ve been moving the 2 half doses towards back to a single full dose. Horowitz advised I go back to a single daily dose. I’m currently taking one 1/2 at 10:45am and the other 1/2 at noon with the goal of taking the full dose at noon every day. I’ve not changed my total daily dose of 29.5mg for 115 days now, I’ve been making moving the 1/2 doses towards each other by only 15minutes a day.

Could all this god awful misery be from just moving the 1/2 doses around like I’ve been doing despite the total dose not changing??

I’ll be fully honest and say I’ve contemplated a quick final solution to this 😩

I need to go be with my family. I’m so sick of being alone but I’m in NO SHAPE to travel like this. Do you think this will settle down once I get to a single daily dose and stay put there for a good spell of time? I’m starting to lose hope.

Pokey

@Chippy i re -read your last post. Everything you said makes sense if I’m being honest. I’ve been tweaking things to much as you suggest and I’ve rocked my own boat I think. I’m going to have to get done with moving my 2 half doses together hopefully by weeks end and leave it alone after that HOPEFULLY to get good and stable. Although the fact the doxepin still being in my system concerns me. It was a bad derision by both my psych provider & me for taking it.

Thanks for being patient with me.

15 hours ago, Pokey449 said:

@Chippy i re -read your last post. Everything you said makes sense if I’m being honest. I’ve been tweaking things to much as you suggest and I’ve rocked my own boat I think. I’m going to have to get done with moving my 2 half doses together hopefully by weeks end and leave it alone after that HOPEFULLY to get good and stable. Although the fact the doxepin still being in my system concerns me. It was a bad derision by both my psych provider & me for taking it.

Thanks for being patient with me.

I agree completely Pokey, a good move. These drugs are never great to have in our system and I agree taking both of these similar drugs is not great at all, but it's the difficult situation you find youself in. Hopefully you can get more stable once you can hold your dose properly, also look into making sure you don't mess your doses up again, this can be very upsetting for the system and won't help you either.

Hope you sleep better tonight my friend.

@Chippy this WD business is very perplexing. Yesterday I was feeling pretty crappy. Was restless most of the day but calmed quite a bit by bedtime. Fell to sleep immediately after lights out and slept through until about 5am. I actually feel human today. I figured I’d have a really bad night, go figure?? Then nights when I think I should sleep ok it turns out to be a horrible night. No rhyme or reason a lot of time to WD.

I’ll m only 1hour 15 minutes away from getting my 2 half doses merged into one. I’m only moving each daily dose by 15minutes each day. Slow but easier on my brain

19 hours ago, Pokey449 said:

@Chippy this WD business is very perplexing. Yesterday I was feeling pretty crappy. Was restless most of the day but calmed quite a bit by bedtime. Fell to sleep immediately after lights out and slept through until about 5am. I actually feel human today. I figured I’d have a really bad night, go figure?? Then nights when I think I should sleep ok it turns out to be a horrible night. No rhyme or reason a lot of time to WD.

I’ll m only 1hour 15 minutes away from getting my 2 half doses merged into one. I’m only moving each daily dose by 15minutes each day. Slow but easier on my brain

I agree completely Pokey, frustrating, I find that I simply have no idea how I will feel the next day. No way of predicting what so ever! No patterns nothing.

Glad you had a better night and as a result day.

Good idea to be as gentle as you can with your moving of times. Very smart IMO.

Hope tonight is at least as good for you, you certainly deserve it.

@Chippy I guess two nights in a row of decent sleep was too much to ask. I awoke in wee hours with the same horrible sxs. I don’t know if it’s cortisol spikes or what. It’s best described as an excruciating spasm of discomfort that washes over my entire body causing me to draw myself up into a ball of misery. It will pause and then hit me again leaving me exhausted & feeling shitty. The most worrisome sxs out of all of this are weird sxs of aching &!tingling in my left arm. I’m worried it’s my heart. The sxs gradually dissipate over about 1/2 hour. I go back to sleep to be awakened later with the same horrible sxs. But it doesn’t make sense to me that you’d have cortisol spikes more than once per night but Svetla claims she does.

I see a new cardiologist today. I will share all of this, especially the left arm issue with him.

Unfortunately my appointment time with the new cardiologist is smack dab in the middle of the times I’m supposed to take my two 1/2 doses. I can’t be measuring doses in the doctors office. The 2 half doses are only 1 hour & 15 minutes apart as of today. Thinking maybe I should just go ahead and merge them into a single dose today and take at my final target time of noon for taking the full dose going forward. Thoughts on that??

I bet you’re going to be feeling better soon! ❤️

@Pokey449, the cortisol waves hit me all the night, every hour. The sensation of dying is unbearable, crushed chest, true horror.

Svetla

Edited June 18Jun 18 by skamen

@Pokey449 I’m sorry mate. I know that feeling. Utter disappointment when the second night isn’t as good. So frustrating and nothing you can change makes it better. Just totally unpredictable. 😞

I’d keep moving the dose slowly rather than jump straight to your desired time. I think the gradual move is a good idea.

@skamen @Chippy I did some googling Svetla. AI says yes you can have multiple cortisol spikes at night. Different conditions will trigger them such as los blood sugar, sleep apnea ( which I have) but I’m on cpap so 🤔 Anyway the sxs fit with it bring cortisol although my heart rate is not spiking much. Cortisol revs up your “engine” normally. I just know whatever is going on is miserable & scary!!!

Morning @Chippy Got a better nights sleep last night. No rhyme or reason to it but I’ll take it. Feel halfway human today. Will make it to the health club today and mow the yard.

30 minutes ago, Pokey449 said:

Morning @Chippy Got a better nights sleep last night. No rhyme or reason to it but I’ll take it. Feel halfway human today. Will make it to the health club today and mow the yard.

31 minutes ago, Pokey449 said:

Will make it to the health club today and mow the yard.

This says a lot! ❤️❤️

33 minutes ago, Pokey449 said:

Morning @Chippy Got a better nights sleep last night. No rhyme or reason to it but I’ll take it. Feel halfway human today. Will make it to the health club today and mow the yard.

Nice to hear! Any improvement on sleep is a good thing. Wishing you many more nights like this.