@Chippy yes I’m getting more sleep and feeling better during the days w/o the more common WD sxs  but something really worrisome is still happening in my sleep. When I wake up both after using & without using CPAP I am in great physical discomfort. Worse when I don’t utilize CPAP. I’ll spare you all the little physical details just to say it feels incredibly unhealthy. I think my respiratory function is being affected, not necessarily being over sedated because I don’t feel over sedated once I’m up, but I think the drugs are affecting the part of my brain that regulates my breathing. Yet I don’t know how to prove that or what if anything I can do about it if that is the case. I see one of my doctors tomorrow and will see what he thinks. 

35 minutes ago, Pokey449 said:

@Chippy yes I’m getting more sleep and feeling better during the days w/o the more common WD sxs  but something really worrisome is still happening in my sleep. When I wake up both after using & without using CPAP I am in great physical discomfort. Worse when I don’t utilize CPAP. I’ll spare you all the little physical details just to say it feels incredibly unhealthy. I think my respiratory function is being affected, not necessarily being over sedated because I don’t feel over sedated once I’m up, but I think the drugs are affecting the part of my brain that regulates my breathing. Yet I don’t know how to prove that or what if anything I can do about it if that is the case. I see one of my doctors tomorrow and will see what he thinks. 

Good things are improving in some ways. I’m not sure about your other issues. That doesn’t sound either nice or good. I don’t know if it is related to your sleep apnea or any other underlying issue, or if it’s wd related. As you say it is hard to prove what you are experiencing is due to drug interactions. I’m not saying it’s not. Like you say, if it is, then what would be the answer? Well longer/medium term, get one of your drugs tapered down to remove that issue. Doing that unstable wouldn’t be nice. So getting a baseline wd state to work from would be key. You have started to improve quite quickly, now the dose and times are level. So I do wonder if some of this is also wd. These drugs affect all of our bodies, so I wouldn’t be surprised. Maybe as you continue to stabilise, you may find things settle some more from here, I’d think that likely. 
 

Be interesting to see what your doctor says. 

I don’t know what the hell is going on. I awoke this morning feeling awful again. Just plain sick, tired, no energy.  Just wiped. I got up and started feeling better. Not great or good, just better, not awful. Doesn’t seem if it was WD I’d improve with simply getting out of bed. When I checked my HR, BP, O2 were within normal limits although BP was up more than typical. I had a whole series of blood tests last week for my annual physical all of which were normal. I had a repeat echocardiogram 3 weeks ago: normal.  My Cpap #s this morning were good as well. 
But something is happening in my sleep to make me feel unwell. And honestly I think it’s going to eventually kill me. I think the 2 drugs: mirtazapine & the doxepin are causing some sort of idiosyncratic reaction that’s unknown to my psych docs. These two meds are not commonly given together & the doxepin should have never been given to with my medical history. My brilliant🤔 psych docs should have realized the contradictions. 
Yes I’m angry and sick n tired of feeling shitty!!! But I don’t know what I can do about it except hang on.  It’s no way to live. It’s a miserable way to exist. 

@Pokey449since coming off Mirtazapine my sleep has been all sorts of messed up. I often wake and don’t feel like I’ve slept. Sometimes I feel better as the day passes. Sometimes I don’t. It’s slowly improving it incredibly unpredictable. It’s like the very mechanism of sleep is broken. I’m unconscious but the sleep isn’t fully functioning. Sometimes day I can feel horrendous on waking. Sleep is a complex process that we don’t well understand. These drugs can really mess with it. You are still on the drugs so hopefully as things settle for you this will improve. We will just have to see how it all goes. You don’t want to be tapering in this state I wouldn’t imagine. Better to hold. Wait to see how things go. We need to get you a better kind of stable before reducing any further I think.

51 minutes ago, Pokey449 said:

I don’t know what the hell is going on. I awoke this morning feeling awful again. Just plain sick, tired, no energy.  Just wiped. I got up and started feeling better. Not great or good, just better, not awful. Doesn’t seem if it was WD I’d improve with simply getting out of bed. When I checked my HR, BP, O2 were within normal limits although BP was up more than typical. I had a whole series of blood tests last week for my annual physical all of which were normal. I had a repeat echocardiogram 3 weeks ago: normal.  My Cpap #s this morning were good as well. 

One thing that was for me to understand during my first months and sometimes I tend to have doubts about healing is that withdrawal symptoms mimic sickness we don't have.  This is the reason your health come back as normal.   The CNS is so sensitive that It is misfiring wrong information to the brain.  

 

If all doctors test came back normal, I will suggest to just keep repeating yourself that your body is healing.  

 

I do my once a year check up just to make sure things are fine, but other than that I don't panic anymore.   These withdrawal mess our psychological, physical, and emotional well-being.

 

Just to give you an example.  When someone experiences rapid heart palpitations.   If you go to the doctor, they will find that everything is normal, but you are feeling a raised palpitations and heart going 100miles an hour.  The fact is that those 100 miles heart rate you feel is actually normal, but because the nervous system is so sensitive, you can feel your heart palpitations.  In a normal CNS, you won't feel any at all.  This is how amazing our bodies are.  

 

One time, I ran to the emergency room feeling this rapid heart palpitations.  I spent 24 hours in the emergency.  They did all kind of test and everything came back negative.   Next day, the doctor came and told me Raymond, all I can say is that your health is like a horse..... after that, I stopped going to ER.  

 

Just try to ignore everything.  Last year, one time, I felt like if a truck hit me 100 times.   I couldn't move, I couldn't stand up from my bed, I was feeling like if I was dying...it last me like three days and then it was gone...

 

Keep holding and don't make changes.  As painful as it is, your body knows how to heal...

Edited April 9Apr 9 by Raymond
Adding comments

@Chippy I get what you are saying. It probably is due to WD, but possibly an ADR between the 2 meds as well. No way to know for sure. Hopefully time will tell. But it’s hard to plan a life, to do things or get things done. My therapist doesn’t get it. My family doesn’t understand either. I’m, like many here, left alone dealing with this misery one day at a time. 

6 minutes ago, Pokey449 said:

But it’s hard to plan a life, to do things or get things done. My therapist doesn’t get it. My family doesn’t understand either. I’m, like many here, left alone dealing with this misery one day at a time. 

Unfortunately, the only people and support you have will be us in this site.  I stopped worrying about my family if they don't understand me.  It's sad that they might see us like we are crazy, but the truth is that they are the ones who are crazy and don't believe in something that we actually feel.  Symptoms are real even though science can't detect anything...

@Raymond yes I understand and get what you’re saying about family not getting it. Just really hard when the ones you love  keep their distance because of all this. They are trying to survive it too I guess. 

1 hour ago, Pokey449 said:

@Chippy I get what you are saying. It probably is due to WD, but possibly an ADR between the 2 meds as well. No way to know for sure. Hopefully time will tell. But it’s hard to plan a life, to do things or get things done. My therapist doesn’t get it. My family doesn’t understand either. I’m, like many here, left alone dealing with this misery one day at a time. 

I feel a lot of what you are saying very deeply mate. I’ve just settled into a groove. No travel, no social life. Strict routine. All I can manage. I’m busy and well occupied but far from a normal life. Obviously I’ll get that back eventually, for the minute I’m just accepting of my bubble. Not easy though. Some days are harder than others. 

@Chippy @skamen @Nemina @Raymond I hailed you all in the hope you can help me understand something. Cortisol spikes?! I don’t know if that’s what I’m experiencing or not in the wee hours of the night. If you’ve had or are having them can you share what the symptoms are like, how they make you feel. 
I awoke about 4 am, the time is different every day, feeling incredibly restless exhauster & unwell. I got up. Was stiff, could hardly walk. Shakey. I hurt all over. In a state of fear. Fearing death had come close in the overly dark lonely night.  Just incredibly miserable. Laid in my recliner a while deep breathing & self massage. The symptoms & fear started to go away. Went back to bed, managed to get back to sleep only to awaken again feeling much the same Finally got up exhausted after sxs abated again. 
It’s worse sone nights than others. Some nights I don’t have the symptoms at all. 
It’s terrifying & infuriating.  it & the other aspects of WD have taken control of my life. There are things I want/need to do but I end up on daily basis alone in my house cowering from living because I’m so F’ing exhausted & afraid. I want my life back. 

9 minutes ago, Pokey449 said:

@Chippy @skamen @Nemina @Raymond I hailed you all in the hope you can help me understand something. Cortisol spikes?! I don’t know if that’s what I’m experiencing or not in the wee hours of the night. If you’ve had or are having them can you share what the symptoms are like, how they make you feel. 
I awoke about 4 am, the time is different every day, feeling incredibly restless exhauster & unwell. I got up. Was stiff, could hardly walk. Shakey. I hurt all over. In a state of fear. Fearing death had come close in the overly dark lonely night.  Just incredibly miserable. Laid in my recliner a while deep breathing & self massage. The symptoms & fear started to go away. Went back to bed, managed to get back to sleep only to awaken again feeling much the same Finally got up exhausted after sxs abated again. 
It’s worse sone nights than others. Some nights I don’t have the symptoms at all. 
It’s terrifying & infuriating.  it & the other aspects of WD have taken control of my life. There are things I want/need to do but I end up on daily basis alone in my house cowering from living because I’m so F’ing exhausted & afraid. I want my life back. 

I hear you mate. That I want my life back. One day we will. 
 

Ive never suffered too badly with morning cortisol for what ever reason. The feelings you describe remind me of how B felt when he woke up. Then back to sleep so the sleep hormone rises again and it happens again. Makes sense. The fluctuations is just normal waves and windows. 

35 minutes ago, Pokey449 said:

Cortisol spikes

@Pokey449.... Cortisol spike always happens during the morning hours between 3am to 4am.  In a normal nervous system, it helps the body to start waking up to start the day.   When our system is sensitive, instead of feeling normal to wake up, you can get a rush of fear, anxiety, intrusive thoughts, etc.  As time passes by and specially in the afternoon hours, you start to feel better because the cortisol starts to settle down to go back to sleep.  Unfortunately, these medications make our CNS so sensitive that our natural Cortisol just wakes us up in a rush.  You can even, out of no where, wakes up with intense fear sensation.   

 

Currently, I'm still dealing with these issues but in a little less intense level.  I was gone for few months, but as I hit month 10 on this journey, it all came back.

 

I'm 16 months now in this journey and still experiencing the same Cortisol issues.  Last night, I woke up with rushing intrusive thoughts and pressure in my brain, head anxiousness, and little fear.   Even rainy weather affects me too.

 

By 10am, I start to feel little better and the fear and all of it starts to get better.

 

Also, if I try to nap, I will suddenly wake up in fear...crazy symptom too...

 

My mornings are bad and afternoons better.   Every day is the same this week for me...

 

It will all get better as your system heals and adjust to your new dose.  Unfortunately, it takes looooong time.

 

Patience and acceptance is the only way out.

54 minutes ago, Pokey449 said:

It’s worse sone nights than others. Some nights I don’t have the symptoms at all. 

This is good.  As your body heals, you will have ups and downs.  

 

Everything will settle down eventually.  

 

The sad part is that it can take a long time.

 

There are many stories where people suffered from more than two years and suddenly one night, it's all gone like it never happened...

 

Terrible journey as hour body try to adjust and find balance..

@Raymond thanks for your response and info. Helps alleviate some of my fear. This morning at 4 am I swore I was on a path towards my death. That I can’t keep this up. But even knowing what’s going on doesn’t make it easier to “get out there” and do the things I’d normally do. I’ve been wanting to drive to my brothers house for some time now. He has full blown Alzheimers. His time is running out. I need to go see him but I’ve just not felt up to the 4hour drive and sleeping in an unfamiliar bed & house. I don’t want to go & be a drag. I hate this with every ounce of my being 🫩

Oh, @Pokey449, these cortisol spikes kill me, I have had them for 13 months now non stop. I wake up at midnight, after 2 hours broken sleep, in terror and with the feeling I am dying. All the night I have hot flashes + dark depression + heart palpitations. I will be lucky if I can sleep another one hour, and around 4-5 in the morning the terror returns, I feel a hellish pression on the chest, I cannot breath and I have to get up because the agony goes worse. And after all the day I am in depression, don't want to live, it is a real misery. The intensity of the psychological pain is ineffable.

Edited April 10Apr 10 by skamen

22 minutes ago, Pokey449 said:

He has full blown Alzheimers. His time is running out. I need to go see him

Sorry to hear this.   Right now, your goal is to avoid stressful situations it's ok if you can't see him.  

 

My father had a stroke last November and I couldn't go and see him.  I was in panic mode with these terrible symptoms.  Currently, he is fine thanks God, but I still can't go see him.  This medication put me in a terrible situation where even to see a sick person will trigger anxiety and fear...

 

I do speak to him on video calls...

 

I read someone that couldn't even go to his mom funeral because the panic symptoms were to high. We only need to take care of ourselves so we can take care of others ..

 

 

9 minutes ago, skamen said:

Oh, @Pokey449, these cortisol spikes kill me, I have had them for 13 months now non stop. I wake up at night, after 2 hours broken sleep, in terror and with the feeling I am dying. All the night I have hot flashes + dark depression + heart palpitations. I will be lucky if I can sleep another one hour, and around 4-5 in the morning the terror returns, I feel a hellish pression on the chest, I cannot breath and I have to get up because the agony goes worse. And after all the day I am in depression, don't want to live, it is a real misery. The intensity of the psychological pain is ineffable.

It's crazy, how we get to experience same symptoms and at the same time.  Out of all the symptoms I get, the ones related to the ones you mentioned are the worst for me too.  Specially the fear or panic sensation....

 

We will get thru this as others did...

 

Hang in there....

Thanks for the feedback @skamen & @Raymond   My therapist is encouraging me to not let this control my life. I agree with that in principle but damned hard to live it on a day to day basis. He says he does not deny what I’m experiencing but in reality he can’t possibly relate to how bad it feels. I shared what I was going through the other day with my primary care doctor when I had my annual checkup. His solution: increase my mirtazapine dose or add cymbalta 🤨😱 They just don’t get it!!!!!!!

55 minutes ago, Pokey449 said:

I shared what I was going through the other day with my primary care doctor when I had my annual checkup. His solution: increase my mirtazapine dose or add cymbalta 🤨😱 They just don’t get it!!!!!!!

😱😱😱😱😱

1 hour ago, Pokey449 said:

Thanks for the feedback @skamen & @Raymond   My therapist is encouraging me to not let this control my life. I agree with that in principle but damned hard to live it on a day to day basis. He says he does not deny what I’m experiencing but in reality he can’t possibly relate to how bad it feels. I shared what I was going through the other day with my primary care doctor when I had my annual checkup. His solution: increase my mirtazapine dose or add cymbalta 🤨😱 They just don’t get it!!!!!!!

I hear you about this.   My therapist believes on what I am going through as well and encourage me to keep going.  She gave me few CBT exercises to do while on this journey.

 

My doctor, like yours, won't believe on it, so I stopped sharing with him my situation.  When I go to do my yearly checkup, I just lie about it and tell him that I'm still at 20mg and feeling great.   I need for him to continue giving me the medication.  If I tell him I'm at a very low dose, he will probably just stop giving me prescriptions.  I can't have that at this moment.

 

Interestingly, after going down on medication, my blood pressure is even better.  On good days, I feel more like me...

 

These doctors nowadays are just meant to give prescriptions......

 

Hang in there, we will get thru this mess....I wish I knew about this long ago before taking the medication, but the doctor just sold to me like a piece of candy and that I should not have issues getting out ...

@Chippy @Raymond what’s a fellow to do if they need to make a major change in their life?? In my case the potential selling of our current home, buying another in a different state/city and moving. All that is stressful for a “normal person”. 
My wife and I moved to where we are currently located 3 years ago but it’s in a town 500 miles from where our kids live. The wife wants to move close to our kids. She’s currently living with my daughter and I’m here all alone which I hate. But I’m not sure I can handle a major uprooting and readjusting to a new place. Finding new doctors etc while dealing with tapering & WD. Maybe once I’m firmly stabilized I can but who the hell knows when that will be??? 
I hate that this s**t is controlling my entire life, which my therapist says I should not allow to happen, but he’s not the one doing the taper & dealing with WD sxs.

I assume others here have to deal with change & other big life issues. Life doesn’t stand still  just because we are struggling with this crap. How do others find the strength to do it????

Dear @Pokey449,  moving closer to your children might not be such a bad idea. Even if it is stressful for the moment, it would be very helpful and uplifting on the long run. The older you get the more you will need the help of your children anyways. Also, you will have your wife around more, which is important I think.

maybe you want to check out this video

https://youtu.be/idYDrMU1l-M?is=jnesKBCtm3ZVu9ds

 

The lady moved closer to family and it really helped her.

From the description: „Though she'd been off Lorazepam for three years, she was still struggling. Her family decided it was best for her and her husband to move closer to their children and better medical care. Though terrified of leaving the home she'd lived in for 35 years, Stephanie made the move. At her lowest point, something unexpected
happened-things began to shift. In the new city, free from constant reminders of all she'd lost, Stephanie began seeing her children and grandchildren more often. She found new doctors who didn't label her and started to feel glimmers of hope. Just four weeks after the move, her symptoms began lifting: akathisia eased, anhedonia faded, she began sleeping, food tasted good again, and
other symptoms started disappearing.”

 

Of course this does not necessarily happen and stress is not good and withdrawal I know that. 

just wanted to throw in this aspect and encourage you a bit to consider the wish of your wife.

 

 

@Pokey449I know Ihat the conventional advice is to avoid stress whilst in WD but I have found that nothing stresses me quite like WD itself. If you have an opportunity not to be alone with all of this I would take it.

7 hours ago, Pokey449 said:

@Chippy @Raymond what’s a fellow to do if they need to make a major change in their life?? In my case the potential selling of our current home, buying another in a different state/city and moving. All that is stressful for a “normal person”. 
My wife and I moved to where we are currently located 3 years ago but it’s in a town 500 miles from where our kids live. The wife wants to move close to our kids. She’s currently living with my daughter and I’m here all alone which I hate. But I’m not sure I can handle a major uprooting and readjusting to a new place. Finding new doctors etc while dealing with tapering & WD. Maybe once I’m firmly stabilized I can but who the hell knows when that will be??? 
I hate that this s**t is controlling my entire life, which my therapist says I should not allow to happen, but he’s not the one doing the taper & dealing with WD sxs.

I assume others here have to deal with change & other big life issues. Life doesn’t stand still  just because we are struggling with this crap. How do others find the strength to do it????

It does sounds good to be nearer your family mate. I can see why that’s an option. I personally wouldn’t want to entertain moving currently, so I understand your fears. Maybe one to think about in a few months, when things have settled down, rather than now, whilst you are in the trenches. 

Pokey I have been following your recovery, I know you are not feeling well but I agree with the previous posts that you shouldn’t be alone if it’s an option and if I were you I would strongly consider the move in the near future. It would be better for your mental health in the long run. I wouldn’t like the thought of finding new doctors either but once established you won’t have to worry about that anymore it will only take a little while to adjust to that. I am praying you get relief soon and your sob goes away.