@Chippy well if I’m starting to finally stabilize it sure doesn’t feel like it. Last night was one of my worst nights yet. Awoke, I think, about 2. I try not to look at the clock when I wake up. Awoke restless and agitated again. Whole body ached. Couldn’t lay still. Nausea. Got up and stumbled out to my recliner for a while. Stumbled back to bed to toss and turn the rest of the night. Finally gave up at 5:15 and got up to have some breakfast. 
Lots of anxiety last night.  Will I ever stabilize. Has the doxepin mirtazapine combo changed my brain to the point I’ll never be normal again. That I’ll get so exhausted from all this I’ll die?
I will freely admit: I’m scared where this is headed. That I’m never going to be well again. The anxiety is consuming me. 

im currently living alone. My wife is in Ohio at my daughters. I decided last night I want to ask my wife if she can check on me each day with a simple text, email or quick call.Silly huh??

@Sminismoni thank you.  yes I don’t think my psychologist really understands the level of misery this is. It’s not your garden variety GAD stuff.  But I think that’s how he’s analyzing it and making recommendations. He says he doesn’t deny I’m having a hard time but he just doesn’t get I don’t think how awful all this is. It’s anxiety on steroids + the terrible physical symptoms that goes with it. My wife and kids don’t fully understand either. It’s hard for anyone who’s not experienced it themselves to know how bad it can feel. 

36 minutes ago, Pokey449 said:

 well if I’m starting to finally stabilize it sure doesn’t feel like

Sorry Pokey. Never does in the midst of it. Can take a long time unfortunately. Certainly some good signs there though. 
 

36 minutes ago, Pokey449 said:

Awoke, I think, about 2. I try not to look at the clock when I wake up. Awoke restless and agitated again. Whole body ached. Couldn’t lay still. Nausea. Got up and stumbled out to my recliner for a while. Stumbled back to bed to toss and turn the rest of the night. Finally gave up at 5:15 and got up to have some breakfast.

I empathise mate. I wake many times at night too. It’s gotten easier but still very unpredictable. It’s exhausting and sleeping is supposed to be the opposite. 
 

36 minutes ago, Pokey449 said:

Will I ever stabilize. Has the doxepin mirtazapine combo changed my brain to the point I’ll never be normal again.

Your body is working hard to balance things out for you. The brain is elastic and adjusts for the environment it’s given. It’s just not a fan of a changing environment and takes time to adjust. Too much time. But this is normal. Unfortunately. 
 

36 minutes ago, Pokey449 said:

That I’ll get so exhausted from all this I’ll die?
I will freely admit: I’m scared where this is headed.

That is understandable. It’s not nice. Any of it. Try to consider your health anxiety in all this too. I know you’ve admitted you’re a bit prone to thinking this way. But to be honest who wouldn’t when faced with all this. That’s where we can help ourselves by working on our mindsets. Banging that acceptance drum again with a side stick of distraction. 
 

36 minutes ago, Pokey449 said:

check on me each day with a simple text, email or quick call.Silly huh??

Not silly. I’m sure you miss her and it must be comforting to have her contact you regularly. 
 

18 minutes ago, Pokey449 said:

It’s hard for anyone who’s not experienced it themselves to know how bad it can feel. 

Has never a truer word been said. 

@Chippy How’s B? He’s been quiet here for some time.  Hope he’s ok. 

4 minutes ago, Pokey449 said:

@Chippy How’s B? He’s been quiet here for some time.  Hope he’s ok. 

He’s just having a break I think. I’m giving him some space. 

I don’t know what’s happening to me. Is it just  a wave or more than that. I’m taking my tapering doses on time and the correct amount. I always double check my dose. My other meds have had no changes. I’ve not changed or skipped anything. I’ve done nothing recently to rock the boat. I had 2 really good nights/days this past week. Yet I’m feeling terrible now.  I’m on day two now of not being out of the house. Im living on my recliner or bed. I fear it’s more than a wave. I fear the  mirtazapine & doxepin are remodeling/changing  my brain permanently & not for the better 😩😱☠️ I hope I’m wrong but I’m starting to lose hope that I will ever be well again. I just don’t understand how I could feel well earlier this week & so terrible now all things being the same. I had thought I’d finally reached stability earlier only to have it vanish the past 2days. 
 

On 4/3/2026 at 8:28 AM, Pokey449 said:

But I don’t know how to have a life. I can’t predict from one day to the next how I’m going to be.

Hi Pokey, I know exactly what you mean. It's been 10 months since I finished my second and last taper, and I'm still dealing with sxs.  It's very difficult to plan outings since I never know how I'll feel when the day comes.  Typically, I sleep between 3 and 5 hours a night, in pieces, so it's hard to have enough energy to do much.  

 

However, in my daily notes, I'm beginning to see a hopeful change.  In Feb. I had one good day, in Mar. I had 4 either fair or good days. Today, Apr. 4, is another good day!  Pokey, hang onto that good day you had on Wednesday as a hopeful sign of better things to come.  Please don't despair, don't give up!

 

I wish you many good days ahead!

Terry

@Pokey449, what it has to encourage you is the fact you have experienced a good days and nights during this hellish journey. It is a proof that the healing is happening. I have read many stories (including Melissa Boutiller's one) when the people don't have had any window for 2 and have years straight. Look at me, I am on my month 13 after CT and 16 days with 0 mg AD, and don't know what the window in WD is... Let's stay connected for support and trust in the Time which is the unique healer. You have the insurance from Dr H. that you do right. At what moment you have noticed that the combination of your both drugs could be wrong? You have had a good moments with this combination either.

Svetla

Svetla. Thanks for your post and encouragement. I’m really sorry you’ve not had any window in 13 months. Amazing. That’s got to be pure hell. You’re obviously very strong  to put up with that. I’ll say a prayer for you & others here tonight. 

@skamen Svetla. See above I forgot to hail you in response to your post. 

@Chippy @Sminismoni  well I definitely do suffer from health anxiety. I recognize my OCD tendencies. I have to monitor that and adjust. It comes out here but I try to keep it to a low Humm. I definitely catch myself and redirect often. 

15 hours ago, Pokey449 said:

My psychologist keeps telling me I shouldn’t keep visiting this site as it’s what he calls “checking” behavior which he claims feeds my anxiety about all the misery I’m experiencing from these horrible drugs.

Ugh, Pokey. For many folks, this is their link to sanity. It serves the same function as support group meetings like AA, etc... This med withdrawal anxiety and depression is a whole different ballgame. It is truly beautiful the community that has come together in support of each other. I know I look forward to checking up on all 'my people' when I get in bed for the night, you included!

 

22 hours ago, Chippy said:

t’s like all the good ones fell through the sieve and ended up in here somehow. 

Well said, @Chippy. Such a heartwarming sentiment. I totally agree. 🥰

5 hours ago, Pokey449 said:

@Chippy @Sminismoni  well I definitely do suffer from health anxiety. I recognize my OCD tendencies. I have to monitor that and adjust. It comes out here but I try to keep it to a low Humm. I definitely catch myself and redirect often. 

Good. It’s all we can do. Just keep that as in check as you can. 

12 hours ago, Terry said:

Hi Pokey, I know exactly what you mean. It's been 10 months since I finished my second and last taper, and I'm still dealing with sxs.  It's very difficult to plan outings since I never know how I'll feel when the day comes.  Typically, I sleep between 3 and 5 hours a night, in pieces, so it's hard to have enough energy to do much.  

 

However, in my daily notes, I'm beginning to see a hopeful change.  In Feb. I had one good day, in Mar. I had 4 either fair or good days. Today, Apr. 4, is another good day!  Pokey, hang onto that good day you had on Wednesday as a hopeful sign of better things to come.  Please don't despair, don't give up!

 

I wish you many good days ahead!

Terry

Hey Terry, thanks for giving Pokey so much great suppport here. Would be wonderful if you could take a minute to write an intro post and say hi.

 

Thanks Chippy 🙂 

Thanks to @Chippy @gardengirl2 @Terry @skamen @LostinCanada

@Sminismoni @Nemina thanks for  all your  kind words of support & caring.  This really is a “village” of of folks caring about each other that truly knows what we are all dealing with. Even when I try to explain best I can  to family, friends and most medical staff they really don’t understand. Everyone here does. All of us have a different variation of the same problem: getting off these drugs is hell!!! It’s important to have somewhere to go when you’re losing hope only to be buoyed by those who understand. A heartfelt thanks to all of you & a happy & blessed Easter. 

@Pokey449 as I said to another member, it doesn't seem to matter what drug, where we live, who we are....the symptoms we deal with are the same. This isn't some made up suffering all in our heads. What we experience is very real but so is the fact that those who have preceded us have healed and so can we. Just one day, one hour , one minute at a time, we are overcoming and winning against all odds. ❤️🙏

58 minutes ago, Pokey449 said:

Thanks to @Chippy @gardengirl2 @Terry @skamen @LostinCanada

@Sminismoni @Nemina thanks for  all your  kind words of support & caring.  This really is a “village” of of folks caring about each other that truly knows what we are all dealing with. Even when I try to explain best I can  to family, friends and most medical staff they really don’t understand. Everyone here does. All of us have a different variation of the same problem: getting off these drugs is hell!!! It’s important to have somewhere to go when you’re losing hope only to be buoyed by those who understand. A heartfelt thanks to all of you & a happy & blessed Easter. 

Happy Easter too mate. It’s a pleasure. I’m glad we have this site to help each other through what would be a very scary and lonely experience without it. 
Family and friends really don’t get it. Such a shame. They would if we broke our legs or had an incurable disease or something. But thanks to big Pharma and ‘main stream’ medicine we are left, unable to seemingly advocate for ourselves. I hope one day this changes. Seems it’s starting to here in the uk at least. The whole wd subject seems to be better accepted here in certain circles at least. I’m finding friends seem to believe and understand much to my surprise. Often having had their own experience of it, but never having had the courage to talk about it. 

Morning @Chippy  I got approximately 7 hrs of broken sleep last night. I’m so grateful for that. But I can’t figure out what’s going on to make my sleep so unrestful. I continue to wake up in great discomfort on or off CPAP. CPAP #s are decent. But I awaken feeling like I’m not getting enough breath. My body is definitely “out of balance” when I wake up. Often stiff & hurting. Takes a while for it to lessen or wear off 

Do others here complain of anything similar. 
i continue to think the combination of the the mirtazapine & doxepin are suppressing my respiration as @Sminismoni once proposed but that Horowitz negated.  And as I said, my CPAP #s don’t bear that out. 
A total mystery to me. It’s exhausting and getting really old. 
Pokey 

29 minutes ago, Pokey449 said:

Morning @Chippy  I got approximately 7 hrs of broken sleep last night. I’m so grateful for that. But I can’t figure out what’s going on to make my sleep so unrestful. I continue to wake up in great discomfort on or off CPAP. CPAP #s are decent. But I awaken feeling like I’m not getting enough breath. My body is definitely “out of balance” when I wake up. Often stiff & hurting. Takes a while for it to lessen or wear off 

Do others here complain of anything similar. 
i continue to think the combination of the the mirtazapine & doxepin are suppressing my respiration as @Sminismoni once proposed but that Horowitz negated.  And as I said, my CPAP #s don’t bear that out. 
A total mystery to me. It’s exhausting and getting really old. 
Pokey 

Morning Pokey. Glad you got a decent number of hours mate. I’ve found my sleep quality to be somewhat questionable. I often sleep a good number of hours, and it’s getting less broken, but I’m finding it is often far from restorative. These drugs really mess with sleep architecture. I didn’t know it was possible until I found out it was! 
 

The breathing doesn’t sound good mate. I’m not sure what to add about that. WD can affect every part of our body so I wouldn’t be suprised if it can cause this. You seem ok with your breathing in the day right?

@Chippy yes breathing during the day is fine. I did 2.5miles on the treadmill yesterday @ 3mph with no issues. I don't know. I guess I'll either "out grow it" or I won't. I'll survive or I wont 🤞

4 minutes ago, Pokey449 said:

@Chippy yes breathing during the day is fine. I did 2.5miles on the treadmill yesterday @ 3mph with no issues. I don't know. I guess I'll either "out grow it" or I won't. I'll survive or I wont 🤞

That’s good. Fit as a fiddle you!
 

I know it’s hard to figure all this out sometimes isn’t it. No help from any professionals. Just left to fend or ourselves. Frustrating. 

I recently read Anders Sorensen’s book CROSSING ZERO. He’s a Danish version of Dr Horowitz. His book goes through all the challenges of getting off ADs, tapering methods, details about various ADs and the side affects of tapering. The list of possible side affects is a mile long. Said side affects depend on a host of variables. Some of them quite scary. 
im having side affects in the scary category. I think im in the early stages of stabilizing as im getting more sleep and feeling better during the day. It’s the sxs at night that are so worrisome. I wake up with points of pain all over my body as well as my whole body hurting. Headache, foggy headed, SOB whether on my Cpap or not, whole body stiffness and unsteady on my feet. Hurts to walk.  I don’t know for sure but I think my brain is being affected to the point of suppressing my respiration & thus spikes of hypoxia that come & go.  But HR remains in normal range. Thing is I don’t know what to do about any of this. Has anyone here had similar sxs?? 

28 minutes ago, Pokey449 said:

CROSSING ZERO. He’s a Danish version of Dr Horowitz. His book goes through all the challenges of getting off ADs, tapering methods, details about various ADs and the side affects of tapering. The list of possible side affects is a mile long. Said side affects depend on a host of variables. Some of them quite scary. 
im having side affects in the scary category. I think im in the early stages of stabilizing as im getting more sleep and feeling better during the day. It’s the sxs a

@Pokey449.   Yes, the list is a long one.  I bought his book, but I haven't gotten the chance to finish it.   Currently, I am having issues to even read.

 

You will get better.  My first 7 months were terrible in constant panic and fear.  Then, I got better in the afternoons.  I was bad between 4am to 12pm.  Then, I got better in the afternoons.   Now, after 15 months journey, I get bad between 7am to 10am and as time goes by, it improves....

 

You will get there.  It just take time....I have 6 months holding since my last cut.....

11 hours ago, Pokey449 said:

I think im in the early stages of stabilizing as im getting more sleep and feeling better during the day.

Beautiful, @Pokey449! Now let's get your nights sorted out. I'm praying for your healing and comfort.

xxoo Jamie

14 hours ago, Pokey449 said:

I think im in the early stages of stabilizing as im getting more sleep and feeling better during the day.

Good to hear mate. Keep that steady path. More to come.