11 hours ago, Pokey449 said:

@EDP6893 Early on I had nights without these awakenings. Seems like they’ve gradually crept into my night and the sxs that go with the awakenings have gotten progressively worse. I worry it my be affecting my heart.

I've had my withdrawals get worse overtime too. It's been 16 months since mine began and this last month I've had pain so bad I'm forced to go to the toilet every 15 mins almost every day.

I guess when they say withdrawal recovery is non linear they mean it doesn't just get better, then worse, then a bit better, then a bit less worse, etc... it means it will actually just keep getting worse for ages until it decides it's had enough.

Edited April 23Apr 23 by EDP6893

@Chippy As I think you know I’ve split my doxepin dose (29.6mg) into two doses to address interdose WD sxs due to its 15 hr 1/2 life. I’ve been taking 14mg at 8am and 15.6mg at 2pm. Ive held this routine for 38days. Taking a liquid dose at 2pm that must be precisely measured can be very inconvenient with other daily activities: appointments, travel etc. I want to move that 2pm dose slowly in 30minute increments to 5 of 6 pm. I’ve been taking that 2pm dose for 40 days now. So I decided I could start slowly moving my afternoon dose towards 5pm. I’ve done 2 days at 230 and yesterday at 3:00.

Well, last night I had a TERRIBLE night!! Feel awful today. It’s hard for me to believe such a minor change caused such negative reaction??? Or should I just chalk it up to the regular ups and downs of WD. I’ve held at the same dose of 29.6mg for 62 days now. Daytime sxs have greatly improved. I’ve been feeling like nighttime has been gradually getting better, then BAMMM!! Last night nailed me!!!!

Any advice appreciated.

@Pokey449

When our nervous systems become so sensitive, even seemingly small changes, like when you take your dose can be destabilising. So it could be the move that’s made you feel bad.

Of course it could be just a wave

When holding to get stable, I think keeping everything the same is important.

Ok. I will hold at 3pm for a while. In 3 weeks I have take a bus to the airport at 3pm. I’m going to have to get creative as to how I can take my dose then. I don’t want to be trying to measure a liquid dose in front of people on a bus. They’ll think I’m some sort of a drug addict with my syringes etc. 🤔🤣

3 minutes ago, Pokey449 said:

They’ll think I’m some sort of a drug addict with my syringes etc. 🤔🤣

It may raise some eyebrows!

Perhaps you can get a small liquids container to put your dose into?

Hope you get a better night tonight mate.

Great minds do think alike!!! Amazon has just the ticket. 3oz bottles that I can put a dose in.

2 minutes ago, Pokey449 said:

Great minds do think alike!!! Amazon has just the ticket. 3oz bottles that I can put a dose in.

Perfect 👌

I hate this never knowing from one day to the next how I’m going to feel. With my long hold I’ve been feeling better during the day. Seemed like sleep was improving too with my long hold. . Then out of the blue last night was a terrible night and today I’m so tired I can hardly function. BP is low too. I’m like a slug on a rock. I can usually persuade myself to exercise when I’m not my best but today is feeling like it’s going to be a couch day 🫩

Its like that Pokey. You get cocky that you are getting somewhere then out of the blue it hits you hard again. Its still up and down for me with some bad days still whacking me around a bit. That lack of consistent, linear improvement and not knowing how you will feel on any given day is one of the most frustrating aspects of this. Keep trying to see the big picture and gradual improvement over time.

@skamen @Chippy cortisol spikes seem to be a common WD symptom among folks here. In general I understand what they are and I think I know what the sxs are associated with them. But I’m not sure that’s what’s happening to me each night in my sleep. Svetla you report having them often. Could I ask you to share those symptoms so I can compare with the sxs I have each night. I think I’m having a possible adverse cardiopulmonary reaction to the doxepin during my sleep but I may be “over worrying” what’s going on.

I’m waking in overall physical discomfort. I hurt all over. Plus I’m restless with a creepy crawly feeling that ebbs and flows. Often I have a headache or feel very groggy & thick headed. I’m super stiff & achy. Nausea often times. But what really concerns me is a weird, varied combination of localized pins & needles, burning, points of aching/mild pain in my left shoulder or elbow or hand. The sensations move around. When I check my O2, heart rate or BP they are fine. These sxs occur both when I’m using CPAP & I’m not. I’ll get up in the night and go to my recliner to “work off” the discomfort, go back to bed & sleep only to awaken later with all the same symptoms.

Im worried the doxepin is negatively affecting my heart. Or it’s affecting my respiratory drive which in turn is affecting my heart??

Anyway if you could help me understand symptoms of cortisol spikes better I’d appreciate it.

Cheers

Pokey

@Pokey449, there are my symptoms: the cortisol pic arrives with heart palpitations, heavy chest, sensation of deep anxiety and depression, hot flashes, sweats, nausea, needles on my fingers, legs pains. But the unbearable feeling of terror and dying is the most horrible. Also restlessness, internal pression and tremor. And this happens every hour starting on midnight. The intensity of this Hell is enormous. Around 5 am the situation becomes critical and I cannot more stay in bed. And all the day I am restless with a big tension cramping over all my body.

Do you have any relief during the day, Pokey? Any motivation? I am glued to the sofa without being able to read, to watch TV, to listen to music, to do things. It is not a life...

Svetla

Svetla. Thanks for the feedback. My sxs are certainly not as varied and as long lasting & intense as you describe yours. At least I’m able to get out & do some things including getting some much needed exercise every other day. Still I find them worrisome. Thing is I don’t know what I or anyone else can do about them. I just know they are not healthy.

2 minutes ago, Pokey449 said:

Svetla. Thanks for the feedback. My sxs are certainly not as varied and as long lasting & intense as you describe yours. At least I’m able to get out & do some things including getting some much needed exercise every other day. Still I find them worrisome. Thing is I don’t know what I or anyone else can do about them. I just know they are not healthy.

remember that you can always choose to not believe/disregard that worry emotion, as we all know 99.9% of people heal.

@Pokey449

I’m sorry you are still suffering with these awful symptoms over night. They do sound like wd symptoms to me. @Lightys advice to give them less space in your mind is wise. Avoiding secondary fear is really important.

I agree these symptoms are not nice, unfortunately time is the key to stability, which I think you’re starting to see the results from. Wish there was a magic wand.

44 minutes ago, skamen said:

@Pokey449, there are my symptoms: the cortisol pic arrives with heart palpitations, heavy chest, sensation of deep anxiety and depression, hot flashes, sweats, nausea, needles on my fingers, legs pains. But the unbearable feeling of terror and dying is the most horrible. Also restlessness, internal pression and tremor. And this happens every hour starting on midnight. The intensity of this Hell is enormous. Around 5 am the situation becomes critical and I cannot more stay in bed. And all the day I am restless with a big tension cramping over all my body.

Do you have any relief during the day, Pokey? Any motivation? I am glued to the sofa without being able to read, to watch TV, to listen to music, to do things. It is not a life...

Svetla

Bless you Svetla. Thank you for posting this. It’s very kind of you to share with everything you are dealing with currently. One day you will be victorious. Xxxxx

@Chippy @Lighty i hear what you’re saying but I don’t think I should stick my head in the sand either. My psychologist says I have health anxiety & thinks I should stop visiting AR altogether, that doing so is feeding my health anxiety/OCD. . Which I admit I have. I’m a worry wart!! But I asked him if I was a drug addict or alcoholic did he think I should stop going to NA or AA meetings. I see AR as a comparable support group as I told him. Still he feels it’s exacerbating my anxiety. But I’m not going to stop coming here though as there’s to much knowledge from all you kind & caring people.

These psych drugs can & do have terrible affects on those of us who are here. I’m on 2 such meds, 2 of which are not typically combined. In fact it’s recommended they NOT be combined due to risk of serotonin syndrome, which I know I dont have but also because of additive sedative affects, especially in us older folks. As @Sminismoni suggested a while back my respiratory drive, which is controlled by my brain, may being suppressed. Add this to the fact I have sleep apnea & a history of AFib.

So bottom line I don’t know what’s going on for sure. When it’s all said and done I’m not sure there’s anything that I can do about it other than getting stable, get my doxepin down to 25mg. Stabilize there and then taper off the 7.5mg of mirtazapine as it’s a lot closer to zero than the doxepin. This assumes of course I don’t die in my sleep in the process 🤔🤣

@Pokey449 I find it laughable that your psychologist would suggest we are the issue! We are only here because of of the drugs! I fail to see how offering peer support to each other makes this harder. The alternative is sit at home suffering wondering what’s happened to us and what we should do about it!

No he does see AR as the issue. The issue as he sees it is a case of my repeatedly seeking reassurance to alleviate my anxiety. That repeated reassurance seeking increases my mental suffering is his postulate. Something like repeatedly washing one’s hands to alleviate one’s worry of germs.

I made your very argument above to him. I told him this is nothing that anyone would or should go it alone. I suspect SA & now AR has saved lives. Kind people helping each other through a very tough time. That’s only a good thing.

1 minute ago, Pokey449 said:

Kind people helping each other through a very tough time. That’s only a good thing.

Exactly.

What’s going on in my fractured sleep seems to be getting worse, not better. I’ve tried sleeping without my CPAP. Makes no difference if I’m using CPAP or not. Last night I tried my oral appliance which helps open up one’s airway inn lieu of CPAP. It made no difference. I continue to wake up in major physical distress hurting all over my body. I don’t feel out of breath but deep breathing helps to relieve things. Upon awakening my heart rate is ok. I checked my BP last night. It was elevated a bit. Heart rate was in the 50s. So no AFib or anything like that being obvious. I just wake up in physical & mental distress & hurting all over. After I’m up the pain & stiffness goes away. But Then I’m exhausted & feeling s****y for the coming day. And It’s not getting any better. It’s a nightly event occurring 2-3x.

I’m not convinced it WD, but rather a negative drug affect from the doxepin. I think it’s affecting my brain depressing my respiratory drive, heart rate and/metabolism. In essence, it’s slowly killing me.

1 hour ago, Pokey449 said:

What’s going on in my fractured sleep seems to be getting worse, not better. I’ve tried sleeping without my CPAP. Makes no difference if I’m using CPAP or not. Last night I tried my oral appliance which helps open up one’s airway inn lieu of CPAP. It made no difference. I continue to wake up in major physical distress hurting all over my body. I don’t feel out of breath but deep breathing helps to relieve things. Upon awakening my heart rate is ok. I checked my BP last night. It was elevated a bit. Heart rate was in the 50s. So no AFib or anything like that being obvious. I just wake up in physical & mental distress & hurting all over. After I’m up the pain & stiffness goes away. But Then I’m exhausted & feeling s****y for the coming day. And It’s not getting any better. It’s a nightly event occurring 2-3x.

I’m not convinced it WD, but rather a negative drug affect from the doxepin. I think it’s affecting my brain depressing my respiratory drive, heart rate and/metabolism. In essence, it’s slowly killing me.

Im sorry Pokey, it sounds like WD to me, its just the waves, things can fluctuate on the path to stabilising. You obviously have moved your dose around recently, this may be a factor here now. Hang in there, you are doing really well, in difficult trying times.

I think these $&@(: so called cortisol spikes are going to kill me. I wake up all jittery, creepy crawly feeling, anxious, often nauseous. Weird aches & pains & other weird bodily sensations & aches/pains. Elevated HR &BP.

I don’t understand cortisol spikes. Why tapering/WD causes them and how you can have more than one per night which seems to be common??

I awoke last night at about 2 am, 3:30 and for the final time at 5:45. In all 3 cases I awoke restless, ancy with that sickening creepy crawly feeling in my body. Couldn’t lay still, had to toss n turn, self masssge, derp breathe to get some relief. A awful nasty set of symptoms.

Typically one’s cortisol rises steadily in the wee hours to start waking you up for today. But it seems those of us tapering off these poisons get hit with spikes repeatedly in the night. Do I understand this correctly and if so are there any articles or explanations of how/why this happens?? Seems one would burn out a persons adrenals if they repeatedly pump out cortisol night after night. I just dont understand how these spikes happen more than once/night. Seems it’s more complicated than that or something else is happening as well??

Also I got to wondering. I take a beta blocker for my BP. I take it in the morning. So I’m wondering if I took it at bedtime if it would mitigate these awful symptoms at night so I could sleep better?? Seems it’s worth a try???

@Pokey449 , I feel you very well. Last night was awful for me too, I awoke at 12, 2, 3, 5 and after it was impossible to stay on bed. The cortisol spikes kill me literally, creepy crawly sensation, dark depression, anxiety, hot flashes. Right now the feeling of deadness persists, living Hell, impossible to function. Angela Peacock explained in her Letter to Doc posted April 16 that this terror caused by the cortisol is so commun in WD...

Svetla

Edited April 27Apr 27 by skamen

@Pokey449 wish more was known about wd symptoms. But as you know the general medical community often don’t recognise them, let alone papers or studies on them.

We sleep in cycles of around 1.5/2 hours. At the top of each cycle we are closest to the awake state. So it often seen we wake at this point. So maybe that’s why you wake at this kinda interval, once awake the symptoms kick in, then the deep sleep masks them.

I’d not move your beta blockers about. Remember you nervous system is looking for homeostasis. It wants regular. I’d worry you might cause further destabilisation in the process. I’ve seen and experienced worsening through trying to fix things. Keep it steady if it were me.

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?

Regarding the BB I wouldn’t move my morning dose to bedtime, I taken a 2nd dose at bedtime. I only take 2.5mg of Nebivilol , the lowest dose in the morning. I’ve taken 5mg in a day before with no ill affects. But I gather you don’t advise that either ????