20 hours ago, Pokey449 said:

I don’t understand what accounts for the drastic difference from one night to the next.

Sorry Pokey! I know this feeling only too well. It makes no sense at all!

20 hours ago, Pokey449 said:

he 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 have the same thing in Nov, last year was ok in the end, but sometimes they have an event in the summer near us and it can very loud, I don't look forward to it. I just try to not worry about it, stick my ear plugs in and trust I will be somewhat ok. That seems to work out.

18 hours ago, Pokey449 said:

Feel just plain sick. My gut is completely out of whack along with everything else.

This is common, I get this too mate. I am sorry,

10 hours ago, Pokey449 said:

What’s really scary for me is I’ve been contemplating a final solution to all the misery & loneliness.

SI is very common. It is just our inner voice looking for a way out of this, not give it any airtime, this is not something you need to take seriously mate.

Hang in there Pokey! You will get there! You are having better night and days, there will be more!

SLEEP!!! I cannot get a decent nights sleep on a consistent basis. I don’t know if it’s due to WD or my back pain issues or my bed/mattress or all of the above?? I’ll get a decent restful night and then a miserable night the next. I think I’m finally stabilizing now that I’ve merged my two 1/2 doses into one and have been taking it now at the same time for a week. I continue to wake up 2-3x a night in great physical discomfort. My back is killing me at night but I’m having other symptoms as well: headache, mild Akathisia, mild nausea last night. Saturday night I stayed at a friends house on a firmer bed. Slept 7 hours & didn’t hurt as bad & awoke less during the night. So I’m going to try our other firmer bed to see if that helps or hurts. But I think 🤔🤔 I’m stabilizing finally 🤞🤞

I'm happy to hear your sleep is improving, keep up the good work and let your nervous system do as it needs.

31 minutes ago, Pokey449 said:

SLEEP!!! I cannot get a decent nights sleep on a consistent basis.

I hear you mate.

Glad you can recognise some stability. Sleep is well know to be the last thing to resolve. Hold the line mate. You’ll get there.

@Chippy My smart watch says I got nearly 7 hrs of sleep last night which included a decent amount of REM & Deep sleep. My cpap report for the night was really good as well. Yet each time I woke in the night & this morning I felt like bloody hell. Not sure what’s happening to cause me to feel so s****y!! When I check my pulse with my smart watch it shows slightly elevated HR but nothing alarming. Says I’m in normal sinus rhythm. O2 remains above 92% but think I’m getting some sharp dips which may be what’s causing me to awaken suddenly feeling bad. I am showing elevated BP when I first awaken in distress which is not a good thing which could be due to apneas.

They did put a 24hour heart monitor on me yesterday that I’m wearing for 3 days. Maybe that will tell me something??

I’m thankful I’m getting some sleep finally but something is not doing well yet. Hopefully things will improve with time. I acknowledge that things could be so much worse.

10 hours ago, Pokey449 said:

My smart watch says I got nearly 7 hrs of sleep last night

That sounds wonderful. I would LOVE to have that much sleep sometime.

10 hours ago, Pokey449 said:

each time I woke in the night & this morning I felt like bloody hell. Not sure what’s happening

I'm sorry you have to go through this so much. Wish you had some solid answers for it.

Great news @Pokey449 about sleep! I know it has been a while since I have been on here. I wanted to say hi and check in. Things appear to be evening out for you. I will keep you and everyone in my thoughts and prayers that one day we don't have to monitor symptoms, nor wake up to another day of ugh or worse, but have an easy go and be in the flow in the stream of the river of life (Somatic Experiencing metaphor for being in ventral vagal/calm/alert/grounded state). Blessings my friend! ☺️

17 hours ago, Pokey449 said:

@Chippy My smart watch says I got nearly 7 hrs of sleep last night which included a decent amount of REM & Deep sleep. My cpap report for the night was really good as well. Yet each time I woke in the night & this morning I felt like bloody hell. Not sure what’s happening to cause me to feel so s****y!! When I check my pulse with my smart watch it shows slightly elevated HR but nothing alarming. Says I’m in normal sinus rhythm. O2 remains above 92% but think I’m getting some sharp dips which may be what’s causing me to awaken suddenly feeling bad. I am showing elevated BP when I first awaken in distress which is not a good thing which could be due to apneas.

They did put a 24hour heart monitor on me yesterday that I’m wearing for 3 days. Maybe that will tell me something??

I’m thankful I’m getting some sleep finally but something is not doing well yet. Hopefully things will improve with time. I acknowledge that things could be so much worse.

Great to see your sleep was better. It is not uncommon to wake from a techically 'good' night sleep and feel something didn't work properly. I have this often. Unfortunately this is common on the drugs.

Hope tonight is better still for you.

4 hours ago, Chippy said:

Great to see your sleep was better. It is not uncommon to wake from a techically 'good' night sleep and feel something didn't work properly. I have this often. Unfortunately this is common on the drugs.

Hope tonight is better still for you.

Morning @Chippy unfortunately last night was a horrible night again. Little total sleep. Multiple awakenings feeling quite unwell. I awakened suddenly each time feeling slightly air starved, anxious & in an odd & worrisome sort of pain. I keep remembering what Sminismoni offered that might be happening. That the doxepin may be suppressing the respiratory drive center in my brain. My brain in effect suffocating me. Hopefully this is not the case and it’s WD plain & simple. But I remain skeptical. I need to check my nightly sleep cpap data to see if I’m having a bunch of central apneas which are due to your brain “ saying don’t bresthe”

I pray you obtain the answers you need soon @Pokey449. I know it can be like a teeter totter sometimes with health issues and tapering/withdrawals added on top of it. I hope you sleep better this evening and going forward.

Thanks @namastejen1 it’s all so exhausting. I know there are folks here struggling way worse than I am. Unfortunately that doesn’t make it any easier for me dragging through the days or waking up in distress in a dark lonely house. But all I can do is take one day at a time. But I feel like I’m slowly sinking in quick sand. Worried I’ll get in so deep there will be no getting out.

Well, you have us on here that can throw you a rope so to speak to encourage you out of that quick sand. What have you done in the past to help you cope with this type of despair?--if you would call it this. What has worked for me and might work for you is finding 2-3 new things each day that you are grateful to have in your life--beautiful sunrise, tasty meal, birdsong, etc. Prayer, affirmations/loving kindness meditation, and journaling the feelings to get them out of your mind/body and on paper are other good techniques. In general, a mindset shift can help you pull yourself out of this and manage the down times better. But of course, get your ducks in a row about your breathing difficulties. Our breath is our life force...do what you can to take slow deep breaths when you are awake. I am glad you have a cpap machine to help at night when you are not conscious. Again my prayers are with you Pokey.

19 hours ago, Pokey449 said:

unfortunately last night was a horrible night again.

Im am sorry to read mate. As you know the path is not linear.

19 hours ago, Pokey449 said:

Hopefully this is not the case and it’s WD plain & simple. But I remain skeptical.

I many are all looking for the missing thread in WD on the worse days.

Hope tonight is better for you.

@Chippy @namastejen1 Im 77 y/o. So I’ve had my share of aches &pains, being sick with the flu,had covid, hospitalized in 1985 for depression. Had 2-3 surgeries. Been treated for AFib and sleep apnea. But I think last night was the most miserable, most ill I’ve ever felt in my entire life. Absolutely awful I kept waking up with a terrible creepy crawly sick feeling coming and going in waves. Felt like I wasn’t getting enough air (breath). I’d take my Cpap mask off, put it back on,take it off. I did deep breathing to ease things. Fall back to sleep to awaken all over again feeling terrible again. I was sure last night that im slowly dying. I can’t figure out what’s happening in my body. It’s called WD here which is a catch all term for lots of different sxs. Feel if I knew what was actually physically happening maybe I could mitigate it. I could barely make it to the kitchen this morning Im so exhausted. I need to do some things today. Ain’t going to happen. Another couch day. Really tired of this existence….its not living🫩 I’ve been at Trying hard to not give up but starting to feel that dying would be a blessing.

I’ve been at a dose of 29 or 29.5mg since January. Yes I’ve split that dose into 2 halves and tried different times of taking the 2 half doses to finally end up taking the full dose at 12 noon which I’ve been doing for 2weeks now. Could this really be the cause of the misery I’m dealing with now? This dose shifting?? If so why wouldn’t I have felt worse 2 weeks ago instead of now?? Because my brain is playing catch up with the changes that were made???

17 hours ago, Pokey449 said:

Im 77 y/o. So I’ve had my share of aches &pains, being sick with the flu,had covid, hospitalized in 1985 for depression. Had 2-3 surgeries. Been treated for AFib and sleep apnea.

Im sorry Pokey, sounds like you have had your fair share of ups and downs. Life is often not easy is it?

17 hours ago, Pokey449 said:

But I think last night was the most miserable, most ill I’ve ever felt in my entire life. Absolutely awful I kept waking up with a terrible creepy crawly sick feeling coming and going in waves.

Again mate, I am so sorry, that sounds like awful.

17 hours ago, Pokey449 said:

it’s called WD here which is a catch all term for lots of different sxs.

It is more than WD causes all sorts of problems.

17 hours ago, Pokey449 said:

Really tired of this existence….its not living🫩 I’ve been at Trying hard to not give up but starting to feel that dying would be a blessing.

I know it is hard mate, but we are a long time not here, lets push on try to make the most of the time we have, our bodies are strong and can get us through this process.

17 hours ago, Pokey449 said:

Could this really be the cause of the misery I’m dealing with now? This dose shifting?? If so why wouldn’t I have felt worse 2 weeks ago instead of now?? Because my brain is playing catch up with the changes that were made???

Well, in short yes. It is not just about adapting unfortunately, changes can cause kindling, a kind of irritation or injury to the nervous system and it takes it time to heal. A bit like itching a scab I suppose.

Just gotta hold the line my friend and let time do its thing.

Hope tonight is a MUCH better night.

Thanks @Chippy for the feedback. I value your expertise a great deal. If I were to summarize my situation I think it would sound like the following. Please tell me if you think it accurate.

I have a history of being on/off psychotropics 3x in my past. I tapered off all 3 of them with no issues. February 2025 I was put on 50 mg of doxepin for pain & sleep. It did not help & I decided it was a big mistake on my part to do it. I & my psych provider decided I should get off the doxepin. I’ve been having lots of trouble with this taper. I tapered from 50mg down to 29.5mg in 308 days. Due to being a likely victim of kindling this time I likely tapered to fast ???

I’ve been at 29.5mg now for several months. Per Dr Horowitzs advice I’ve tried splitting my total dose into 2 half doses to address possible interdose tolerance WD. I’ve tried taking the 1/2 doses at 8&12, 8&4, 12&4 and have returned to taking a single full dose at 12 noon. I’ve been at the single 12 noon dosing time for 2 weeks now. I’ve been sleeping very poorly & feeling terrible.

@Chippy if i understand correctly what you think as to why ive been having such a hard time & feeling so crappy it’s due to all the back n forth adjustments ive made with daily dose(s) even though ive been at the same total dose for several months now. That kindling has been playing a role in my misery. That I need to just stay put with my dose/time and give it time for things to finally settle down. Make no more adjustments until I’m good & stable??

@Pokey449, in my misery I am thinking of you. How do you feel?

My cortisol rushes at night and in the morning are unbearable. Terror and feeling of dying. My sweats and muscle pains over my body torture me also. My nervous system underwent the greatest hit on its existence with the endless drugs and doses changes, psedo-treatments... and now it is kindled and cannot settle down. We have to be patient and trust in the inner capacity of the brain to reach homeostasis. Our ages (I am 63 y/o) don't play in our favour, the neuroplasticity of the brain is less available for us. But, HOPE and mutual support.

Svetla

@skamen Hi Svetla. Yes our ages don’t help with getting over this misery. As I noted in my last post I’ve tapered off 3 different meds @ different times in the past and really don’t recall any real issues. But that’s not the case this time. This time is miserable. I should have known better

and refused the suggestion of my psych provider to take the stuff. But I didn’t and here I am. Dr Horowitz has suggested I get down to 25mg and just stop my taper there & live with it the remainder of my life. It won’t provide me any particular benefit but hopefully won’t do me any harm. At least I should be able to finally cease the WD sxs according to him. I dont think I have it in me to deal with a taper all the way to zero. It would take years given how things have been going for me currently. I’m tired of it consuming my life and have no desire for it to steal whatever years I have left.

Hi Pokey. i hope things do settle down a bit for you now you've combined doses. Even just a small break from the full on sensations is a relief that can help reset you.

18 hours ago, Pokey449 said:

Thanks @Chippy for the feedback. I value your expertise a great deal. If I were to summarize my situation I think it would sound like the following. Please tell me if you think it accurate.

I have a history of being on/off psychotropics 3x in my past. I tapered off all 3 of them with no issues. February 2025 I was put on 50 mg of doxepin for pain & sleep. It did not help & I decided it was a big mistake on my part to do it. I & my psych provider decided I should get off the doxepin. I’ve been having lots of trouble with this taper. I tapered from 50mg down to 29.5mg in 308 days. Due to being a likely victim of kindling this time I likely tapered to fast ???

I’ve been at 29.5mg now for several months. Per Dr Horowitzs advice I’ve tried splitting my total dose into 2 half doses to address possible interdose tolerance WD. I’ve tried taking the 1/2 doses at 8&12, 8&4, 12&4 and have returned to taking a single full dose at 12 noon. I’ve been at the single 12 noon dosing time for 2 weeks now. I’ve been sleeping very poorly & feeling terrible.

@Chippy if i understand correctly what you think as to why ive been having such a hard time & feeling so crappy it’s due to all the back n forth adjustments ive made with daily dose(s) even though ive been at the same total dose for several months now. That kindling has been playing a role in my misery. That I need to just stay put with my dose/time and give it time for things to finally settle down. Make no more adjustments until I’m good & stable??

Essentially yes Pokey. Also coming off and taking previous drugs plays into this even if you didn't think so at the time. I believe there is a cost to our nervous systems taking these drugs, ofte they can handle the cost for a time but it puts wear and tear on the system. Eventually the wear and tear starts to show and there is a straw that breaks the camels back moment for many imo.

This is a copy of the drug history I made for you, I have highlighted the bit I think caused you the biggest kick to the system. From here every move you made on top of this has further destablised you. If you read that section alone it is no wonder you are suffering, if you think you continued to taper and make changes after whilst not stable, is it any wonder you are not stable still? Knowing what we know about these drugs, not really!

2022 Approx - Mirtazapine 7.5mg

13 Jan 2025 - Doxepin 25mg

16 Jan 2025 - Doxepin 50mg (+100%)

17 Jan 2025 - 05 Feb 2025 - Mirtazapine Taper 7.5mg to 2.65mg (-64.66%)

06 Feb 2025 - Mirtazapine - 5.3mg (+100%)

20 March 2025 - Mirtazapine - 7.5mg (+41.5%)

24 March 2025 - Doxepin 45mg

04 April 2025 - Sleep went to ‘hell in a hand basket’

07 April 2025 - Stated you would start split dosing Doxepin

09 April 2025 - Stated you had moved your Doxepin from Bedtime to morning

14 April 2025 - Doxepin 43mg

20 April 2025 - Doxepin 41mg 

28 April 2025 - Doxepin 40mg (-20% from 50mg in 4 weeks approx.)

09 May 2025 - Doxepin 39mg (Date appox)

May 2025 - Certainly, having a hard time of it

15 May 2025 - Started Split dosing again no crossover I think

18 May 2025 - Doxepin 38mg

27 May 2025 - Doxepin 37mg 

31 May 2025 - Doxepin switched back to morning dosing

31 May 2025 - Doxepin 37mg

01 June 2025 - Doxepin 36mg

15 June 2025 - Doxepin 35mg

08 July 2025 - Mirtazapine Xtra ¼ tablet taken

15 July 2025 - Doxepin 34mg 

17 July 2025 - Doxepin 35mg

19 July 2025 - Seem a bit better but not perfect

20 July 2025 - Still having night issues

23 Aug 2025 - Doxepin 34mg

07 Sept 2025 - Doxepin 33mg

25 Sept 2025 - Doxepin 32mg

15 Oct 2025 - Doxepin 31.5mg

?? Oct 2025 - Doxepin 30.5mg

07 Nov 2025 - Doxepin 30mg

17 Jan 2026 - Doxepin 29.5mg

28 Jan 2026 - Doxepin 29mg

06 Feb 2026 - Starting spitting Doxepin doses and moving 2nd half gradually later. Paused at Midday.

20 Feb 2026 - Doxepin 29.6mg (0.6mg updose)

 

@Chippy I think 🤔my sleep is attempting to stabilize. I’m getting several hours a night now but it remains fractured. I continue to waken 2-3x feeling very restless with that awful creepy crawly unwell feeling. I keep wondering if it’s cortisol spikes but I’m doubtful about that because cortisol tends to increase your heart rate, BP and makes you sweat. My HR upon awakening is typically in the upper 50s-low 60s. BP is normal when I take it and my O2 is ok and I’m not sweating. I’m not in AFIB. I don’t know what exactly is happening but it’s miserable. Fades away after I’m awake a while. I fall back to sleep only to awaken with the same miserable symptoms. During the day I’m really tired more than anything. I should get the results of my 72 hour heart monitoring next week but I have doubts it will show much. So maybe I’m just having what can only be described as an idiosyncratic reaction due to WD???? Hoping it will ease up with time🤞🤞🤞🤞

2 hours ago, Pokey449 said:

I continue to waken 2-3x feeling very restless with that awful creepy crawly unwell feeling. I keep wondering if it’s cortisol spikes but I’m doubtful about that because cortisol tends to increase your heart rate, BP and makes you sweat.

I get creepy crawly restless feelings at night and I feel ill with it at times. Not nauseous, just unwell, like the flu. I don't get high heart rate, BP or sweats with it. I am sure this is WD @Pokey449

@Sminismoni I can acknowledge it’s WD but I can’t ascertain what physiologically is going on to make me/we to get that creepy crawly feeling. Deep breathing helps alleviate it, I fall back to sleep to awaken later with the same miserable sxs.

30 minutes ago, Pokey449 said:

I can’t ascertain what physiologically is going on to make me/we to get that creepy crawly feeling.

I don't think anyone can precisely answer that because we don't know the exact biological mechanism of WD.

But my question to you is: What would change for you if I could tell you what was going on physiologically? Let's say I told you "It is caused by inbalance of dopamine and cortisol in the limbic system D2 receptors". Because the answer is probably something like that, and honestly that doesn't mean you can control it or change the process.

Don't fall into the trap of thinking that if you can work out the process, then you can do something about it. WD is the ultimate test in letting go of our attempts to control something.

@Sminismoni , as a psychiatrist - is this nervous system injury well known in the field?

Is there any indication of how long it’ll take?