@Chippy last night was awful, horrible, wretched all rolled into one. I think the worst night of my life. I don’t even want to look at last nights sleep data from my smart watch it was such a terrible sleepless night. Akathisia off n on all night from about 230 on. I was up and down multiple times as I couldn’t rest peacefully even if I couldn’t sleep. Miserable!!! I don’t understand why this is so bad, why I’ll have a pretty good night & then get hammered like last night when I’ve made no abrupt changes Even Horowitz said splitting my dose and moving it back usually doesn’t bother most people that much. I’m starting to think I’m never going to stabilize. I fear I’m losing hope which is precipitating some scary thoughts of a final solution. I’m not going to able to travel anytime soon. I’m not living , I’m only miserably existing. I can’t keep this up.

1 hour ago, Pokey449 said:

@Chippy last night was awful, horrible, wretched all rolled into one. I think the worst night of my life. I don’t even want to look at last nights sleep data from my smart watch it was such a terrible sleepless night. Akathisia off n on all night from about 230 on. I was up and down multiple times as I couldn’t rest peacefully even if I couldn’t sleep. Miserable!!! I don’t understand why this is so bad, why I’ll have a pretty good night & then get hammered like last night when I’ve made no abrupt changes Even Horowitz said splitting my dose and moving it back usually doesn’t bother most people that much. I’m starting to think I’m never going to stabilize. I fear I’m losing hope which is precipitating some scary thoughts of a final solution. I’m not going to able to travel anytime soon. I’m not living , I’m only miserably existing. I can’t keep this up.

@Pokey449 ....it's a hard journey, and your body is trying to fix everything. The healing is none linear, so you will have ups and downs (windows and waves). None of us should be on this position. We just need to keep pushing forward and let the body do it's healing.

Keep moving forward. Good nights will eventually come back again.

@Raymond @Chippy this is so exhausting. I’m not sure what really going on. I’ve been at the same dose of 29.5mg for 125 days. However I’ve been moving my dose around by splitting into two 1/2 doses taking the at 8 & 12 noon. Then 8 & 4pm then back 8 & noon and now finally today after moving the 8am dose to 12 noon I’m at a full dose of 29.5 at noon.

I guess all the moving around has gotten me very out of whack. I’m staying put now.

19 hours ago, Pokey449 said:

@Chippy last night was awful, horrible, wretched all rolled into one. I think the worst night of my life. I don’t even want to look at last nights sleep data from my smart watch it was such a terrible sleepless night. Akathisia off n on all night from about 230 on. I was up and down multiple times as I couldn’t rest peacefully even if I couldn’t sleep. Miserable!!! I don’t understand why this is so bad, why I’ll have a pretty good night & then get hammered like last night when I’ve made no abrupt changes Even Horowitz said splitting my dose and moving it back usually doesn’t bother most people that much. I’m starting to think I’m never going to stabilize. I fear I’m losing hope which is precipitating some scary thoughts of a final solution. I’m not going to able to travel anytime soon. I’m not living , I’m only miserably existing. I can’t keep this up.

I am very sorry Pokey, it is an awful thing to have to cope with, we all understand.

I think the smallest thing can cause issues when a nervous system is so sensitive, 'most people' is a too generalised statement for me, we don't know enough about WD to say that.

My observations have been that when someones nervous system is destabilised it is astonishing how such a small change can make a bit impact. You have also had errors in dosing in that time. That alone can be enough to cause people issues, ontop of a sensitive nervous system this effect is magnified.

SI is very common in WD, we all have it when things are at their worse. We are simply looking or scanning for an off ramp, normal, but in reality you must not consider these thoughts as a realistic possibility, you can endure more than you realise, and frankly we are a long time dead, where is the rush!

13 hours ago, Pokey449 said:

I guess all the moving around has gotten me very out of whack. I’m staying put now.

Good plan. Make sure you don't have any hiccups with your dose too. Nice straight run now at this setting.

Hope you are rewarded with a good sleep tonight

@Chippy I had a decent day yesterday. Went to bed feeling ok last night. My smart watch said I fell asleep in 3minutes. Yet I had a terrible nights sleep. Woke up multiple times in distress. I have the same cluster of symptoms every night that I don’t know what to make of them.

Low back pain that seems to radiate throughout my body. Nausea. Groggy thick head. Creepy crawly restlessness to the point I can’t lay quietly in one spot. I get up and stagger out to my recliner. I do deep breathing & self massage to try and work off the pain and restlessness. I go back to bed, toss n turn a while and eventually fall back to sleep only awaken later with same uncomfortable sickening symptoms. I check my heart rate, O2 and BP and they are all within normal limits. @skamen does it sound like cortisol spikes? Could it be my blood sugar doing weird things? I can’t figure out what’s happening and why at night only when sleeping and not during the day. Whatever the genesis of the symptoms it’s not healthy and is exhausting. Any advice is appreciated.

@Pokey449, I have the same awful symptoms especially during the night: creepy crawly restlessness plus feeling of terror and dying. I wake up each hour with sweats and heartbeat. This horrible state started on March 20 after stopping Mirtazapine. For me is clear that it is WD bcs I am drugs free. And during the day I have the sensation that I am plugged into the electrical network, horrible tension over the body with back pains. I don't know how I will be able to continue to take this Hell.

Svetla

54 minutes ago, Pokey449 said:

Creepy crawly restlessness to the point I can’t lay quietly in one spot.

I get this too at night time, often. I don't think there is any ither explanation for this, other than withdrawal. I am female, a couple decades younger, and was on different drugs but I have similar symptoms. Logic suggests this is WD, not that you and I have separate conditions both causing this.

Thanks @Sminismoni & @skamen I appreciate the feedback and to know what is likely going on. I’ve been at the same total dose of doxepin for 125 days now and keep thinking I should be stable by now but then I’ve rocked the boat by splitting my daily dose into 2 half doses (per Dr. H) and widened the times when I took them in theory to address interdose tolerance withdrawal since doxepin has ~15hr 1/2life. Then moved back to a single dose (again per Dr. H) so I guess that has messed up any stability I might have achieved. I’m staying put where I’m at now with the single daily dose. It’s only been a couple days.

Then throw into this picture I’m on 7.5mg of Mirtazapine as well. I should have NEVER allowed this to happen & such a combination should have NEVER been prescribed by my psych doc. But here I am 😩 The long term plan is to taper the doxepin to 25mg & just stop there. Get stable & stay stable. Then VERY slowly taper the mirtazapine to 3.75mg and stay there. I’m 77 and I don’t want to spend the remaining years of my life putting up with the sxs of WD. I want to be comfortable & die in peace when the time comes.

Dear @Pokey449, I am 100 days without any changes (completely off drugs) and so so awful, in acute WD. Even sometimes I think stuff go worse. Don't blame you, you haven't done nothing wrong. We don't know when the nervous system will reach stability. We have to hope that is works hard for homeostasis.

Svetla

@Chippy i read your long post to Sminimoni about this struggle that we are all going though or been on. You shared in depth how you managed to see your way though it. How you managed to retrieve and hold onto a sense of hope after going through days/weeks of no hope.

I’m in that phase of lost hope now. That I’ll never be well again, that any sense of a normal life, feeling well again is lost forever. I keep telling myself not to believe that, that I will get to a place of peace & being ok, but the doubt won’t go away.

Its hard to not lose hope because here I am 126 days later at the same dose and still feeling awful much of the time. Granted it is likely due to my moving my doses around to much. Hopefully I will settle down now that I’m now at a single dose & will hold a good amount of time. But then I consider a suggested goal by Dr H of getting to 25mg and staying put there the rest of my life simply because this tapering business is to frigging hard. To painful. I’m 77 and don’t want to spend what years I have left tediously measuring out doses and dealing with miserable WD sxs from tapering. It’s a bit like having a terminal illness and electing to forgo the treatment in favor of a quality of life until the end. I’m now at 29.5mg and that could be a lifetime away from zero when you’re 77. So im working at accepting the fact I will not be drug free the rest of my life. Thats a hard pill to swallow & I worry I’ll never be totally sxs free or feel fully well again.

@Pokey449 There is no doubt this is the fight of our lives, but we are stronger than we realise. I think you are doing everything you can right now to help your system settle down. Consider this a reset and try to forget the time you have been at this dose so far, I would also not worry too much about any future tapering at this stage. What you need is for the symptoms to settle down. My main mantra is "there is only today", I give no thought, or as little as possible to tomorrow and beyond and just cope with the day I'm in, honestly that has been my best coping strategy.

Morning @Chippy well I had an atypical night last night for a change. I slept from 1045pm to 545am without waking up Thinking/hoping I might be able to travel to my brothers home for the July 4th celebration weekend, our Independence Day. I really need to get out of this house if I can🤞🤞🤞Hoping it’s a sign of stabilizing rather than a fluke.

@Pokey449 It looks like you are really making progress, albeit slowly. Sleeping for 7 hours straight is wonderful! Wishing you many more nights like this ahead. Hope you're able to make it to your brother's home for July 4th.

Terry

18 hours ago, Pokey449 said:

Morning @Chippy well I had an atypical night last night for a change. I slept from 1045pm to 545am without waking up Thinking/hoping I might be able to travel to my brothers home for the July 4th celebration weekend, our Independence Day. I really need to get out of this house if I can🤞🤞🤞Hoping it’s a sign of stabilizing rather than a fluke.

Wonderful news Pokey!

@Chippy @Terry well the good news didn’t last long. Last night was yet another terrible night. 4 hrs of broken sleep. Same symptoms: pain, nausea, that awful creepy crawly feeling, restlessness, very unwell feeling. What concerns me most is that I’m fearful my heart is being affected. I think I’m having some sort of arrhythmia though when I feel my pulse it feels steady but when I go to take an ECG with my smart watch it reports back as “inconclusive” meaning as I take it it’s not AFIB BUT it’s not showing as normal sinus rhythm either. A smart watch is quite limited in what it can interpret. . Also at the same time my pulse Oximeter can’t seem to capture a steady beat in order to capture a pulse rate and Oxygen level. I truly think something other than or in addition to garden variety WD is happening. With my AFib and sleep apnea history coupled with a worrisome drug like doxepin some not so good things could be happening. I hope I’m wrong but I feel compelled to contact my cardiologist and ask to be put on a 24 hr heart monitor for 3 or 4 days.

As for going to my brothers to his weekend sadly I think am going to need to pass. I don’t want to be waking up in his house dealing with this and so far I have no reliable history to prove that it won’t happen again. I’m having my doubts I’m going to make it to Ohio later to be with my immediate family there . Unfortunately it looks like I remain still in an unstable and unreliable state.

Today is going to be another recliner day 😩😢

17 hours ago, Pokey449 said:

@Chippy @Terry well the good news didn’t last long. Last night was yet another terrible night. 4 hrs of broken sleep. Same symptoms: pain, nausea, that awful creepy crawly feeling, restlessness, very unwell feeling. What concerns me most is that I’m fearful my heart is being affected. I think I’m having some sort of arrhythmia though when I feel my pulse it feels steady but when I go to take an ECG with my smart watch it reports back as “inconclusive” meaning as I take it it’s not AFIB BUT it’s not showing as normal sinus rhythm either. A smart watch is quite limited in what it can interpret. . Also at the same time my pulse Oximeter can’t seem to capture a steady beat in order to capture a pulse rate and Oxygen level. I truly think something other than or in addition to garden variety WD is happening. With my AFib and sleep apnea history coupled with a worrisome drug like doxepin some not so good things could be happening. I hope I’m wrong but I feel compelled to contact my cardiologist and ask to be put on a 24 hr heart monitor for 3 or 4 days.

As for going to my brothers to his weekend sadly I think am going to need to pass. I don’t want to be waking up in his house dealing with this and so far I have no reliable history to prove that it won’t happen again. I’m having my doubts I’m going to make it to Ohio later to be with my immediate family there . Unfortunately it looks like I remain still in an unstable and unreliable state.

Today is going to be another recliner day 😩😢

Im sorry to read Pokey, I too had an awful day yesterday, today much better, how do we plan for anything!? I guess we can't!

I also have family who live far, that I have not seen for a few years now because of all of this. Frustrating. Hope today is a better day for you.

@Chippy im sorry you are not doing well either. The suffering these drugs cause us is horrendous. . It’s just plain frigging awful what we’re dealing with.

It seems since I reached merging my two 1/2 doses into a single full dose a few days ago things have been getting worse, not better. Saturday and Sunday I got 6.5 & 7 hours of sleep thinking I’d finally stabilized. Apparently not!!! Last night only 3.5hrs waking multiple times feeling horrible, and sob.. Now that im up I feel somewhat better. Dont know what to make of things when i feel worse in bed than when i get up. Though I expect to really crash later like I did yesterday. I have an appointment today I’m going to have to reschedule as I dont think I should be driving.

But I fear I’m losing my grip on being able to deal with this psychologically. Im fearful that im never going to stabilize & I’m going to eventually physically collapse in some way and die. I’be been having SI wanting to desperately make it all stop. The repetitive miserable nights & days. The loneliness & isolation of it all. Feeling like a failure to myself and my family. It’s all become overwhelming and hope is getting harder to believe in

It’s 230pm. I’m completely exhausted. I’ve spent the day either in bed or my recliner. I’ve been at a single dose of the doxepin 6 days now. I merged my 2 1/2 doses into one single dose slowly. Yet I feel like warmed over death today. 2& 3 nights ago I slept well and felt like a normal human being for two days. Yesterday and today I’m running on 3-4 hrs sleep & feel like hell. I was going to travel for the July 4th holiday weekend but i have cancelled my trip. Wondering if i will ever stabilize. Will I ever feel normal again. Either as 2 half doses or now a single dose Ive been at .a daily total of 29.5mg for 130 days. I don’t understand why I am so discombobulated when the total daily dose has not changed in 130! Days. Can anyone explain that??

Thanks

Pokey

20 hours ago, Pokey449 said:

@Chippy im sorry you are not doing well either. The suffering these drugs cause us is horrendous. . It’s just plain frigging awful what we’re dealing with.

It seems since I reached merging my two 1/2 doses into a single full dose a few days ago things have been getting worse, not better. Saturday and Sunday I got 6.5 & 7 hours of sleep thinking I’d finally stabilized. Apparently not!!! Last night only 3.5hrs waking multiple times feeling horrible, and sob.. Now that im up I feel somewhat better. Dont know what to make of things when i feel worse in bed than when i get up. Though I expect to really crash later like I did yesterday. I have an appointment today I’m going to have to reschedule as I dont think I should be driving.

But I fear I’m losing my grip on being able to deal with this psychologically. Im fearful that im never going to stabilize & I’m going to eventually physically collapse in some way and die. I’be been having SI wanting to desperately make it all stop. The repetitive miserable nights & days. The loneliness & isolation of it all. Feeling like a failure to myself and my family. It’s all become overwhelming and hope is getting harder to believe in

I am sorry Pokey, I think you must now learn to trust your body and reset the clock on all this. Ground zero was when you finished moving the doses. Give it all the time in the world, don't set deadlines on stablity. You have seen some better days, there will be more of hem to come. Believe and trust in your healing, it will help maybe to heal you, but definitely to cope with all this. You have this! We are all warriors on here as far as Im concerned.

6 hours ago, Chippy said:

We are all warriors on here as far as Im concerned.

True statement! It's easy to feel battle-fatigued, but we keep struggling on.

@Chippy @skamen I don’t know how to describe what all is going on. Feel like I’m coming apart at the seams as they say. Last night was a total bust. I awoke at 2 in a state of panic. The night before I got 7 hours. I don’t understand what accounts for the drastic difference from one night to the next. Then Last night my cpap was a struggle. It was suffocating me. I had to take it off. I think my heart is having issues. I think I’m having some arrhythmias but I don’t know for sure. The longer I stayed awake the more restless I got. I could not go back to sleep. I kept having what I assume were cortisol spikes. Nausea, panic, feelings of doom. I was/am in a state of fear for my life.

The 4th of July holiday is tomorrow. People in the neighborhood are already shooting off fireworks for that. The noise from them drives me insane. I can’t handle the noise and I’m obsessively worrying about how I’m going to cope the next two nights with the noise from them..

I know I am not making much sense and rambling. That’s because I feel like I’m unraveling, coming apart, don’t know how I can take much more of these sleepless, lonely miserable nights and the lonnnggg days that follow. I’m feeling alone,sick, exhausted and scared & don’t know what to do. Feel sick like I’m dying today.

@Pokey449, as you didn't post yesterday, I understood that your night was good. It is a proof that the healing is happening. It is an up and down process. At least, you have some good night, remember this.

What you describe is a cortisol spike, I think. I have the same horror: restlessness, heartbeat, doom, feeling of dying. The hot waves and the adrenaline rushes wake me each 1,5-2 hours, it is unbearable. I cannot sleep. And this terror is hellish. As you, I cannot handle the least stress, my central nervous system is hyper- hypersensitized, at extreme point. Even a thought destabilizes me and amplifies the distress at the point of panic.

But we cannot do nothing in this trap, all former suffers say that the only healer is the time. As yours, my days are so so so long. I am on the couch doing nothing, it is not me, it is not normal, our suffering is enormous.

Svetla

Hi @skamen i think last night and today is the worst I’ve ever felt yet. Feel just plain sick. My gut is completely out of whack along with everything else. Nausea, cramps, diarrhea. Miserable.

First I’m afraid I’m going to die then followed by thinking it would be a blessing 🫩🥲

I took my daily dose on time. It’s been 4 hours and I am still in a horrible state from my terrible night. I’m Exhausted. Feeling the terror. Also struggling with very difficult personal matter that is very distressing I’m all alone. What’s really scary for me is I’ve been contemplating a final solution to all the misery & loneliness. I’m having trouble shutting that voice off.

4 minutes ago, Pokey449 said:

I took my daily dose on time. It’s been 4 hours and I am still in a horrible state from my terrible night. I’m Exhausted. Feeling the terror. Also struggling with very difficult personal matter that is very distressing I’m all alone. What’s really scary for me is I’ve been contemplating a final solution to all the misery & loneliness. I’m having trouble shutting that voice off.

@Pokey449 Those dark thoughts are part of the symptoms. All you have to do is let time pass, and they will pass. You’re due for another decent night. Just hold on!

I have diarrhea from time to time, too.

Edited July 3Jul 3 by Finni