DaveB: trying to stop a roller coaster year

[Rosetta]

Hi Dave, 

 

I'm right there with you!  Cortisol is a big problem today, and it started in the middle of the night for me.  There must be some changes going on because cortisol is, in a normal person, supposed to start rising (slowly) at about 4:30 a.m. to gradually wake us up. It's not suppose to be a bullhorn, a heart attack, and a nausea inducing adrenaline rush.  This happened to me at least 3 times this past night, maybe 4!  It must be a sign of healing because if it's not . . .  Seriously, it's so horrible, but it does end.

 

Right now, I know what you are feeling -- I cannot take one more day of this!  Yet, you will, and so will I, and we will come out on the other side.  Every time I look at your signature (and I have to keep looking at it because I can't fathom that you are as functional as you actually are so soon after January 7th), I am amazed at your progress and that you are still working, running your own business and you have kids, too!  You are so strong and so present -- you are giving and caring of others here.  Do you realize how much strength that takes?  

 

You are getting there.  It's way too slow, I know.  It's so very, very demoralizing to have a window and fall back again to this horrendous anxiety.  But we really have no choice, and we need to ignore it when our brains tell us this is demoralizing.  It need not be quite so demoralizing if we can reframe the signs as signs of hope.  But here's another thing: they are also signs of caution -- pain -- even emotional pain -- is the body's way of saying "slow down, rest, let me repair things, let me have a break from pushing forward because I need that energy for something else."  We can't slow down as much as we need to, but we can try to be choosy about what we do and what we think about, too.  I think it's good to have a security gate in our thought process -- if a thought is followed by a rise in anxiety then maybe that thought takes too much energy from the healing process?  Maybe that thought needs to be turned away at the gate?  

 

This idea is kind of the opposite of CBT -- CBT might ask "is that thought helpful or useful right now?  Is it harmful?" Then, the question CBT would ask is "Can we refute it?"  However, I'm thinking that while we are in WD it may be better to NOT go through the refutation process every time.  Maybe the refutation process is for when we are in a window and the stray anxious thought pops up.  When we are in a wave, at that time, maybe the best thing to do is distract -- change the channel -- because, for me, I can't even use the refutation process without an increase in anxiety.  Instead, I am thinking that I can calm the anxiety more reliably by stopping after the question "Is that thought harmful?"  If I turn it away at that point and focus on something else my body seems to start clearing out the adrenaline faster.  I still feel sick to my stomach, and I feel the adrenaline in my limbs, as you say you do, and I'm confused and disoriented, but I don't continue to build that anxiety up.  I stop trying to identify the threat.  If I think about the anxious thought And try to refute it then my mind is more than happy to provide reasons to justify my anxiety!  It might even give me more reasons to be anxious.  The reasons are not even good reasons, and they are often so far in the future that they may never come to pass.    

 

(Oh, as for Altostrata, I don't think she's ever posted on mine either, but I notice that's true for most threads.  I can't think of anything you have ever said that would put anyone off, Dave.  Really.  Everyone likes you.)

 

I hope you get a break today, Dave.  

 

Peace, Rosetta

[brassmonkey]

Stability is not a continuously open window.  Stability is the lack of major swings in either direction (window or wave) that continues  for an extended time.  I can see from your posts that you are starting to stabilize, but it can't be rushed, it will happen in it's own time.  

[DaveB]

Thanks @brassmonkey I sometimes need the reminder "it can't be rushed." Good to remember that stability is not a continuously open window, but a lack of swings. @Rosetta you once again know the perfect things to say, I am sorry you are going through it today. My day has actually gotten much better, seems like my "bad times" swings don't last nearly as long as they used to. When I compare month to month since January I am much better, so there is that!

[Rosetta]

Yep, you are stabilizing.  I wonder if that means I am, too.  Maybe it does.  I can't believe that I've been studying and research for months now, and I don't really feel that I know what stabilizing might look like.  Could it be the same look for both reinstatements and CTs?

[brassmonkey]

I'm not surprised that you didn't find much information on stabilization, because its a big part of a pathology that the medical community doesn't acknowledge exists.  Stability is a very important  part of dealings with ADWD, APWD and BenzoWD.  Without being stable any changes in medication are amplified and become very unpredictable.  Instability is the bodies reaction to any changes in medication, increase, decrease, no change for long time, too many changes and a whole lot more.  Acute instability is characterized by big swings in symptoms that can change hourly, daily, weekly or more.  Instability also shows up as the increase in symptomality that occurs a few days after each reduction in dose, but this is controlled and expected and generally clears in a few weeks.

 

Instability is caused by the body trying to gain control over the influence of the drug and getting confused by there being not enough drug or too little drug.  Over time the body figures out what is going on and makes the changes necessary to try to return to it's natural state. As the body returns to that state the big wings in symptoms calm down and the body relaxes as best as it can.  Once the body has figured out how to react to it's current level of drug and has relaxed and the big swings have stopped things calm down  the body becomes stable as we refer to it.  This does not mean that a person is symptom free or feels a lot better, it usually means that they feel a consistent level of blah.  This level of blah is referred to as WDnormal and is the base line by which overall  improvements are measured.

 

The body needs to be in a stable condition before any changes can be made.  If it is not stable, then the change will further add to the confusion the body is experiencing.  This could be experienced as an immediate acute increase in symptoms or the symptoms could be delayed many weeks.  Making changes while not being stable also can increase the bodies sensitivity to making further changes or to the drug in general.  Both of which are extremely difficult to overcome.

 

What it comes down to is that if you are experiencing large swings in you symptoms for what ever reason, you are not stable and should not attempt any changes.  If you have been feeling a consistent level of bad for a number of weeks, then you can consider making a change.  The only exception to this are actual cases of poopout (not assumed cases) which need to be handled in their own specific manner.  Achieving and maintaining stability is the key to a smooth and uneventful taper. 

[DaveB]

1 hour ago, brassmonkey said:

I'm not surprised that you didn't find much information on stabilization, because its a big part of a pathology that the medical community doesn't acknowledge exists.  Stability is a very important  part of dealings with ADWD, APWD and BenzoWD.  Without being stable any changes in medication are amplified and become very unpredictable.  Instability is the bodies reaction to any changes in medication, increase, decrease, no change for long time, too many changes and a whole lot more.  Acute instability is characterized by big swings in symptoms that can change hourly, daily, weekly or more.  Instability also shows up as the increase in symptomality that occurs a few days after each reduction in dose, but this is controlled and expected and generally clears in a few weeks.

 

Instability is caused by the body trying to gain control over the influence of the drug and getting confused by there being not enough drug or too little drug.  Over time the body figures out what is going on and makes the changes necessary to try to return to it's natural state. As the body returns to that state the big wings in symptoms calm down and the body relaxes as best as it can.  Once the body has figured out how to react to it's current level of drug and has relaxed and the big swings have stopped things calm down  the body becomes stable as we refer to it.  This does not mean that a person is symptom free or feels a lot better, it usually means that they feel a consistent level of blah.  This level of blah is referred to as WDnormal and is the base line by which overall  improvements are measured.

 

The body needs to be in a stable condition before any changes can be made.  If it is not stable, then the change will further add to the confusion the body is experiencing.  This could be experienced as an immediate acute increase in symptoms or the symptoms could be delayed many weeks.  Making changes while not being stable also can increase the bodies sensitivity to making further changes or to the drug in general.  Both of which are extremely difficult to overcome.

 

What it comes down to is that if you are experiencing large swings in you symptoms for what ever reason, you are not stable and should not attempt any changes.  If you have been feeling a consistent level of bad for a number of weeks, then you can consider making a change.  The only exception to this are actual cases of poopout (not assumed cases) which need to be handled in their own specific manner.  Achieving and maintaining stability is the key to a smooth and uneventful taper. 

 

Great stuff as always BM, I think I am not the only one confused by what is “stable”, because as you said the medical community doesn’t acknowledge its existence. So while experiencing “windows and waves” you are technically unstable and should hold until this pattern ends and you feel just “blah?” As you taper the “blah” feeling begins to recede?

[DaveB]

Also @brassmonkey, is the blah feeling of stability more depression than anxiety? Seems high anxiety points to being unstable as it by nature comes in waves and swings, correct?

[brassmonkey]

I'm using "blah" as a catch all term for what ever symptoms one tends to feel.  This is where the individuality of each taper comes into play as each person has their own unique set of symptoms.  Also it will vary along the path.  Sometimes it will be depression or anxiety, sometimes fatigue, dizziness, anger, just about anything will show up as the predominate symptom but there will always be an underlying feeling of "I'm not well".  It's one of those things that can't really be explained, but you will know it when you feel it.  At  the beginning of a taper while still at the higher doses there is so much happening in the body it can be really hard to pinpoint.  Nothing is going to completely disappear while tapering, there will always be an ebb and flow of symptoms.  So the window and wave pattern won't completely go away but rather settle to a clam sea, so to speak. Not glassy smooth water but rather a gentle roll with no crashing surf. Then at times a squall will pass through with some big waves and then they will calm down again.  The WD symptom pattern is a very dynamic thing and is very hard to tie down to specifics.  It's more overall patterns and averages that have to be paid the most attention to.

[wildchild93]

On 3/15/2018 at 1:35 PM, Rosetta said:

Oh, as for Altostrata, I don't think she's ever posted on mine either, but I notice that's true for most threads.  I can't think of anything you have ever said that would put anyone off, Dave.  Really.  Everyone likes you.)

She posted on mine! So I’m obviously better lol just kidding. Actually she just told me to keep track of stuff better cause i’m all over the place ;P I love reading Dave Bs feed. Good stuff. 

[DaveB]

5 hours ago, brassmonkey said:

I'm using "blah" as a catch all term for what ever symptoms one tends to feel.  This is where the individuality of each taper comes into play as each person has their own unique set of symptoms.  Also it will vary along the path.  Sometimes it will be depression or anxiety, sometimes fatigue, dizziness, anger, just about anything will show up as the predominate symptom but there will always be an underlying feeling of "I'm not well".  It's one of those things that can't really be explained, but you will know it when you feel it.  At  the beginning of a taper while still at the higher doses there is so much happening in the body it can be really hard to pinpoint.  Nothing is going to completely disappear while tapering, there will always be an ebb and flow of symptoms.  So the window and wave pattern won't completely go away but rather settle to a clam sea, so to speak. Not glassy smooth water but rather a gentle roll with no crashing surf. Then at times a squall will pass through with some big waves and then they will calm down again.  The WD symptom pattern is a very dynamic thing and is very hard to tie down to specifics.  It's more overall patterns and averages that have to be paid the most attention to.

 

As I get stable I should feel a little better though right? I mean less swings should make it easier to function. When does feeling good happen? Or is dealing with withdrawal a life sentence?

[DaveB]

4 hours ago, wildchild93 said:

She posted on mine! So I’m obviously better lol just kidding. Actually she just told me to keep track of stuff better cause i’m all over the place ;P I love reading Dave Bs feed. Good stuff. 

 

Haha, DaveBs feed of “I am getting better...never mind!” “Oh wow I am stabilizing...wait...nope...false alarm!”

[Rosetta]

32 minutes ago, DaveB said:

 

Haha, DaveBs feed of “I am getting better...never mind!” “Oh wow I am stabilizing...wait...nope...false alarm!”

 

Lol, it's the same with mine!  I do have glimpses of what life might be like without WD.  Just moments of being able to imagine it.  Moments of feeling comfortable in my own skin, moments when something that drives me nuts with irritation or frustration while in a wave are suddenly "ok" with me.  I can think "This is recovery, it's a bummer, but I'm not too anxious or too depressed about the fact that this is my life for the foreseeable future."  Maybe the waves are getting smaller just a tiny bit.

[brassmonkey]

As you stabilize the lack of fluctuations should make things easier to handle.  As for the feeling good, it happens when it happens.  In general as a persons dose gets lower their symptoms start to sort themselves out and and things start to feel better. But as the hold of the drug decreases emotions that have been dormant will start to surface and that will rock the boat.  Battling these drugs shouldn't be a life sentence, but there are just too many things involved to be able to tell you that you will be feeling fine by next year.  The best thing is to try and live in the moment.  "This is the way I'm feeling right now and this is how I'm going to handle it."  Worrying about when you will start to feel better is just going to cause a lot of anxiety, false expectations and worry that will use up a lot of energy that will be needed for other things.  Enjoy what you can, as you can and let the healing happen.

[DaveB]

On 3/16/2018 at 8:02 PM, brassmonkey said:

As you stabilize the lack of fluctuations should make things easier to handle.  As for the feeling good, it happens when it happens.  In general as a persons dose gets lower their symptoms start to sort themselves out and and things start to feel better. But as the hold of the drug decreases emotions that have been dormant will start to surface and that will rock the boat.  Battling these drugs shouldn't be a life sentence, but there are just too many things involved to be able to tell you that you will be feeling fine by next year.  The best thing is to try and live in the moment.  "This is the way I'm feeling right now and this is how I'm going to handle it."  Worrying about when you will start to feel better is just going to cause a lot of anxiety, false expectations and worry that will use up a lot of energy that will be needed for other things.  Enjoy what you can, as you can and let the healing happen.

 

Wow are my fluctuations still so strong! Last couple of days I have gone from extreme anxiety at times, to completely normal, sometimes within the same hour. Is this a sign that I am simply not stabilizing, or is this just part of the process, even after keeping things stable for months now? Good news is when I feel good, it is really good now, like 80-90% of normal. When it is bad, it is as bad as ever, and it can fluctuate within a few hours. Mornings are not as bad as they have been, but I am not getting the cortisol free mornings I was last week. Today has been a pretty good day though so far, but I am kinda just waiting for anxiety to hit hard out of nowhere like it has the past couple of days. 

[Rosetta]

Thinking of you, Dave.  I know I'm not in the same situation, and I may not know anything about it, but I count it as a good sign that you feel normal sometimes.  One day you will suddenly realize that your high anxiety is always medium anxiety.  (And then you will hate that as much as the high anxiety, lol!)  How is the Dr. Pepper monster doing?  I have tea or decaf coffee now.  I'm not sure how it affects me.  I'm just trying to lessen the anxiety producing issues as much as I can.  

[DaveB]

21 hours ago, Rosetta said:

Thinking of you, Dave.  I know I'm not in the same situation, and I may not know anything about it, but I count it as a good sign that you feel normal sometimes.  One day you will suddenly realize that your high anxiety is always medium anxiety.  (And then you will hate that as much as the high anxiety, lol!)  How is the Dr. Pepper monster doing?  I have tea or decaf coffee now.  I'm not sure how it affects me.  I'm just trying to lessen the anxiety producing issues as much as I can.  

 

All things considered I am doing ok Rosetta. There are times when the fact I am still struggling with the daily anxiety is frustrating and quite demoralizing, but I try to float through it the best I can. I had some REALLY bad mornings on Saturday and Sunday, but it didn't last the whole day and they ended up not being bad days. Had a pretty great day yesterday actually. I am still working on slaying the Dr. Pepper monster. Down to one 20oz Dr. Pepper a day, looking to jump off next week. I have been drinking https://www.lumasoda.co/ in order to reduce the shock of stopping.

[DaveB]

A grind it out day today, yesterday was much better. I am honestly surprised and disappointing at my lack of improvement this far into my hold. I was really hoping and kind of expecting to be doing much better and be much more stable by now. I thought I would be starting a Zyprexa taper by now, but honestly I don't feel even close to that point. Anyone with any advice/encouragement? Is recovery and stability just not going to happen for me? 

[Rosetta]

Oh, Dave, I hate to hear you feeling discouraged.  This is such an awful slog!!  Of course, you will recover.  The time it takes is downright ridiculous.  You must be so tired.  I know I am.  Today was better than yesterday, but not a very good day.  I did a lot of things today I haven't been able to do for what seems like a week.  You are going to work everyday, I presume, and not getting much rest, but "rest" is illusion for me it seems.  I don't feel rested ever even on good days.  It's been almost 3 month since you made that mistake with Klonipin and less than that from when you settled on 20 mg of Paxil, correct?  I think it could be any day now that you stabilize.  You had a window six days ago and another yesterday?  

 

Remember daylight savings time is quite destabilizing.  Maybe that's a big factor in all of this?  I'm hoping it is for me.  

[DaveB]

36 minutes ago, Rosetta said:

Oh, Dave, I hate to hear you feeling discouraged.  This is such an awful slog!!  Of course, you will recover.  The time it takes is downright ridiculous.  You must be so tired.  I know I am.  Today was better than yesterday, but not a very good day.  I did a lot of things today I haven't been able to do for what seems like a week.  You are going to work everyday, I presume, and not getting much rest, but "rest" is illusion for me it seems.  I don't feel rested ever even on good days.  It's been almost 3 month since you made that mistake with Klonipin and less than that from when you settled on 20 mg of Paxil, correct?  I think it could be any day now that you stabilize.  You had a window six days ago and another yesterday?  

 

Remember daylight savings time is quite destabilizing.  Maybe that's a big factor in all of this?  I'm hoping it is for me.  

 

Yes almost 3 months since Klonopin and almost 2 and a half on 40 mgs of Paxil. I have some days where it is all quite manageable and some where it is just unbearable. It has kind of always been that way and I don’t know whether I am actually improving or just trying to convince myself it is the case during a semi-window. I just can’t believe this is all still such a big part of my life after all these months, when does it get better? I guess just thought this long hold would be what I needed to let my system settle down...that just hasn’t happened, and now well into year #2 of this, am I ever going to get back to being me away from this crushing anxiety?

[Rosetta]

I know how frustrating this is.  I believe you will be you again.  It was the cold switch to Lexapro that caused your anxiety, I suppose.  Well, you feel like you some days.  I believe that means you will get completely well.  That's what I believe about myself.    It's really an awful experience!

[DaveB]

1 hour ago, Rosetta said:

I know how frustrating this is.  I believe you will be you again.  It was the cold switch to Lexapro that caused your anxiety, I suppose.  Well, you feel like you some days.  I believe that means you will get completely well.  That's what I believe about myself.    It's really an awful experience!

 

 

I just don’t see many people who stabilize later on if they already haven’t after an extended hold of a few months. Makes me doubtful that holding and doing nothing is going to help me at this point.

[Rosetta]

Maybe those people who did not stabilize added new drugs in desperation?  I think the fact that you are still grinding it out on the days you feel awful means you won't make that mistake.  You are strong enough to make it to stabilization.  I suppose some people have it even harder than you do and can't get through it.  Are you sleeping enough?  That's a big factor.

[DaveB]

41 minutes ago, Rosetta said:

Maybe those people who did not stabilize added new drugs in desperation?  I think the fact that you are still grinding it out on the days you feel awful means you won't make that mistake.  You are strong enough to make it to stabilization.  I suppose some people have it even harder than you do and can't get through it.  Are you sleeping enough?  That's a big factor.

 

Yes sleep is not really an issue, and hasn’t been since I started Zyprexa in August.

[ChessieCat]

3 hours ago, DaveB said:

Makes me doubtful that holding and doing nothing is going to help me at this point.

 

December 26th - December 29th: Screwed up my doses, took Klonopin instead of Paxil by mistake.

 

I have assumed that this means you didn't take any Paxil at all on these days.

 

This is a chart of your Paxil doses from 1 June 2017 to current.  I hope that seeing this visual of the dose changes you have made will help you to realise that it may take several more months for your brain to stabilise after all the changes in Paxil dose.

 

Edited March 21, 2018 by ChessieCat

[DaveB]

9 hours ago, ChessieCat said:

 

December 26th - December 29th: Screwed up my doses, took Klonopin instead of Paxil by mistake.

 

I have assumed that this means you didn't take any Paxil at all on these days.

 

This is a chart of your Paxil doses from 1 June 2017 to current.  I hope that seeing this visual of the dose changes you have made will help you to realise that it may take several more months for your brain to stabilise after all the changes in Paxil dose.

 

 

This is a good representation, thank you for this. I am just sick of feeling anxious all the time. It makes everything so much harder and I really thought I would be doing somewhat better by now. How you seen people take this long to stabilize and then it still happen?

[DaveB]

It was just a few weeks ago I was having no cortisol spikes in the AM, almost felt calm in the mornings...seems like a lifetime ago.

[manymoretodays]

Hi Dave,

 

.......and awesome chart ChessieCat.   Dave, you are into about your 8th year overall of medication/drugs that most of us here are not real fond of.  And just barely holding for about 2 months now.   I just want to encourage you to keep going.  You are kind of at that crucial period again, for you.........from what I have observed.......... where you might feel like you need to make drastic changes again.    I encourage you to get to 3 or even 4 months of as is, or longer.........and perhaps finding your W/D stable,  before changing anything.   You've seen this one, haven't you?

http://survivingantidepressants.org/topic/6632-the-rule-of-3kis-keep-it-simple-keep-it-slow-keep-it-stable/

 

14 hours ago, DaveB said:

 

Yes almost 3 months since Klonopin and almost 2 and a half on 40 mgs of Paxil. I have some days where it is all quite manageable and some where it is just unbearable. It has kind of always been that way and I don’t know whether I am actually improving or just trying to convince myself it is the case during a semi-window. I just can’t believe this is all still such a big part of my life after all these months, when does it get better? I guess just thought this long hold would be what I needed to let my system settle down...that just hasn’t happened, and now well into year #2 of this, am I ever going to get back to being me away from this crushing anxiety?

 

And happy Spring tidings.......Vernal Equinox......so daylight(sunlight if no clouds) and moonlight are closer in equality.   And with the greater daylight now, for many...........life just gets busier, if you don't take charge, and somehow keep it as simple and manageable as possible.  And really track the positives now Dave.  I'm guessing you are more of a tech inclined sort than myself.  Would you consider doing some tracking of positives and progress offline.  Just use an ordinary calendar with the boxes and color in the better days with your happy/relaxed colors and then the anxious about anxiety days with something perhaps more vibrant and illustrative of that.  Maybe you CAN do this online on a smartphone or Iphone too........I don't know.  Do share if you find something with us.  Maybe your kids would enjoy helping you with this?  Sharing their imaginations?

 

15 hours ago, Rosetta said:

Oh, Dave, I hate to hear you feeling discouraged.  This is such an awful slog!!  Of course, you will recover.  The time it takes is downright ridiculous.  You must be so tired.  I know I am.  Today was better than yesterday, but not a very good day.  I did a lot of things today I haven't been able to do for what seems like a week.  You are going to work everyday, I presume, and not getting much rest, but "rest" is illusion for me it seems.  I don't feel rested ever even on good days.  It's been almost 3 month since you made that mistake with Klonipin and less than that from when you settled on 20 mg of Paxil, correct?  I think it could be any day now that you stabilize.  You had a window six days ago and another yesterday?  

 

Remember daylight savings time is quite destabilizing.  Maybe that's a big factor in all of this?  I'm hoping it is for me.  

 

Spring and fall often do bring on a bit of a shift for many of us as well.  I don't know the real scientific explanation of that......or if there is one.........kind of like the full moon effect on so many.......who wind up often visiting the ER's or psychiatric facilities.  Personally, I think the major U.S. holidays.........wintertime ones,Thanksgiving, and then through the New Year run second to the change of season effect.  Again......not scientific, just my own and friends personal experience with health and mental health fluctuations.

 

Sooo.......be prepared.  Like a good boy scout.  You may want to hold, just hold........... on doing everything that flashes into your mind.........  such as I used to do.......  ........ I  overdid, yet never actually accomplished much ,in my revved up periods of sympathetic nervous system overdrive.  

 

Your sympathetic nervous system is haywire.  Perhaps you can visualize the parasympathetic part of the CNS coming to the rescue now?   What are your main coping skills now?  How is your support system ?............ especially that peer, if you will, support system on the ground.........at home and elsewhere, people you can relax a bit with.  Hanging with your kids sounds fun.  And some low key dates with your dear wife?  Hey, men do yoga too!  Maybe that could be your low key date?    Are you doing some/any meditative exercises?  Even just to listen to all the anxious thoughts.......I often put my squirrel brain on paper........when my thoughts are busy.........I call that meditation/prayer.  And it helps.  Yes, I still have a busy, busy mind at times.  Walking is good to clear the mind of frantic mental energy.  It takes me about 10 minutes and then..........voila'.........clear and peaceful mind.  Same in the pool when I swim........probably just 5 minutes of laps and underwater reflection.        Mindfulness comes to mind as well.......one thing at a time, observe it, describe it, and participate fully in it, or with others in it.  Over and over.  Without judgement.  Then give yourself credit at the end of the day for all that you did do, have done and it will all add up and help.  Full guarantee.

 

(((((((((((DaveB))))))))))), even you can be a butterfly!    Or........there's a hug for you.

 

........and double posting times.  Are you able to get a long sleep prior to your "cortisol spikes"?  And yay........it WAS only a few weeks ago that you didn't have the morning symptoms.  Is it the crabby, agitated, hate the world stuff?  That was the hardest for me to tolerate as well..........and well, everyone around me.........even if I was mum(quiet).  Bad ju jube energy that folks do recognize even when one doesn't speak.  So you are due for that to pass then, if that's how it is.  I mean don't embrace it but make friends with it.........whatever those symptoms are of your "cortisol spikes". 

 

Better days soon for you buddy.

L,P, H/IR, and G,

mmt

 

 

Edited March 21, 2018 by manymoretodays
elaboration, spelling, clarity

[Rosetta]

10 hours ago, DaveB said:

Yes sleep is not really an issue, and hasn’t been since I started Zyprexa in August.

 

You are very, very lucky, and so am I.  Sleep is when the body heals.  Some people don't have this advantage.  I think that once the sleep issue resolves, even partially, people tend to see progress.  I'm sorry you are feeling so much doubt.  I wish I could give you a bit of my confidence that this miserable syndrome will eventually lessen to the degree that you can taper.  Maybe you discount what I believe because I'm not taking medication.  I don't see any reason for our CNS issues to be different.  Maybe you do?

[DaveB]

41 minutes ago, Rosetta said:

 

You are very, very lucky, and so am I.  Sleep is when the body heals.  Some people don't have this advantage.  I think that once the sleep issue resolves, even partially, people tend to see progress.  I'm sorry you are feeling so much doubt.  I wish I could give you a bit of my confidence that this miserable syndrome will eventually lessen to the degree that you can taper.  Maybe you discount what I believe because I'm not taking medication.  I don't see any reason for our CNS issues to be different.  Maybe you do?

 

Yes, I am very lucky I no longer worry about sleep. I usually wake a little early, like 7:15ish with some anxiety, then when it is time to get up at about 7:45 the anxiety is going strong. I certainly don't discount what you believe, and trust me, I am borrowing all of your confidence that I can. I believe you are correct, the CNS issues are the same regardless of whether you are taking drugs or not, you are simply in a better place than I am and for that I am jealous. You have been such an inspiration and support to me through this, I can't thank you enough. 

 

1 hour ago, manymoretodays said:

........and double posting times.  Are you able to get a long sleep prior to your "cortisol spikes"?  And yay........it WAS only a few weeks ago that you didn't have the morning symptoms.  Is it the crabby, agitated, hate the world stuff?  That was the hardest for me to tolerate as well..........and well, everyone around me.........even if I was mum(quiet).  Bad ju jube energy that folks do recognize even when one doesn't speak.  So you are due for that to pass then, if that's how it is.  I mean don't embrace it but make friends with it.........whatever those symptoms are of your "cortisol spikes". 

 

Better days soon for you buddy.

L,P, H/IR, and G,

mmt

 

Yes I am able to get a good long sleep prior to cortisol spikes that start around 7:15AM. I am usually asleep by 11:30 and sleep straight until 7:15. Exactly the agitated, crabby, hate the world, can I handle another day stuff. My wife can always tell as well, even when I think I am doing great at grinding through. 

 

1 hour ago, manymoretodays said:

Dave, you are into about your 8th year overall of medication/drugs that most of us here are not real fond of.  And just barely holding for about 2 months now.   I just want to encourage you to keep going.  You are kind of at that crucial period again, for you.........from what I have observed.......... where you might feel like you need to make drastic changes again.    I encourage you to get to 3 or even 4 months of as is, or longer.........and perhaps finding your W/D stable,  before changing anything.   You've seen this one, haven't you?

http://survivingantidepressants.org/topic/6632-the-rule-of-3kis-keep-it-simple-keep-it-slow-keep-it-stable/

 

Thanks you for this link, and for pointing out that this is indeed the point I always get fed up with it and "try" something else. I appreciate all your kind words and advice, it is all very much appreciated and very much needed. 

 

On a more positive note, my IBS has settled again (maybe a good sign), hopefully it will last this time.

[Rosetta]

Huh, I don't think of us as being in different places with this illness at all!  I don't think this will last forever.  Maybe that's the difference you see.  I see our symptoms as being the same.  It's very curious.  I doubt recovery sometimes, too, but I know, intellectually, that it's just fear making me doubt it.  

[DaveB]

19 minutes ago, Rosetta said:

Huh, I don't think of us as being in different places with this illness at all!  I don't think this will last forever.  Maybe that's the difference you see.  I see our symptoms as being the same.  It's very curious.  I doubt recovery sometimes, too, but I know, intellectually, that it's just fear making me doubt it.  

 

Sorry I wasn't clear, the place I meant being different is just that once you heal, you will be done with all of this while I still have a long taper ahead of me (though hopefully a much more uneventful one that this past year has been). As far as our destabilized CNS and healing I would agree there is no difference in our syndromes and even many symptoms which I why I gain so much strength from you. I agree, intellectually I know it won't last forever, but when in the thick of it, it is like my optimism gets sucked away. No question the fear makes me doubt! Anxiety is starting to ease up now, which is nice. After yesterday and this morning, I almost forgot what it felt like to ease up.

[Rosetta]

14 minutes ago, DaveB said:

 

Sorry I wasn't clear, the place I meant being different is just that once you heal, you will be done with all of this while I still have a long taper ahead of me (though hopefully a much more uneventful one that this past year has been). As far as our destabilized CNS and healing I would agree there is no difference in our syndromes and even many symptoms which I why I gain so much strength from you. I agree, intellectually I know it won't last forever, but when in the thick of it, it is like my optimism gets sucked away. No question the fear makes me doubt!

 

I see.  Yes, I understand.  I'm "further along" at 13 months, and you assume that I'm going to be out of this before you will be.   I can see how you would feel that way.  I'm hoping you will benefit from all those who have made mistakes and documented them here, and that you can do a Brasmonkey slide.

 

Please don't end up with a doctor who tries to make you jump off too early. I think you are better off doing what Brassmonkey did and making a liquid rather than having it prescribed.  You should try to avoid your doctor having a reason to take Paxil away.  Just take your prescription and taper without telling the doctor.

 

I hope that the fact that you have been able to work means your mind hasn't been to the places mine has and that overall your journey will be less traumatic.  Maybe the Zyprexa is the difference, and as much as you hate it having that brake has been very fortunate.  I don't know, but I'm glad your life is still intact.  (Mine is, too, but only because my husband is keeping the ship upright.)

[DaveB]

19 minutes ago, Rosetta said:

Please don't end up with a doctor who tries to make you jump off too early. I think you are better off doing what Brassmonkey did and making a liquid rather than having it prescribed.  You should try to avoid your doctor having a reason to take Paxil away.  Just take your prescription and taper without telling the doctor.

 

Trust me, I will never do that. If I can ever get stable and feel more like myself, I will be the ultimate turtle coming off this stuff. I am in no rush and just want to stop the daily anxiety. Even though I hate the Zyprexa, I will even crawl off of that (though that may be hard as it doesn't really dissolve in water and the pills are quite small). 

 

21 minutes ago, Rosetta said:

I hope that the fact that you have been able to work means your mind hasn't been to the places mine has and that overall your journey will be less traumatic.  Maybe the Zyprexa is the difference, and as much as you hate it having that brake has been very fortunate.  I don't know, but I'm glad your life is still intact.  (Mine is, too, but only because my husband is keeping the ship upright.)

Yes I can work, and though it is excruciatingly hard sometime, I am still quite good at what I do despite all of my issues. Honestly, as much as I do hate it, I believe the Zyprexa has helped me. Yes, my life is very very very hard right now, but also very much intact so there is SO much to be thankful for! Thank you for pointing this out Rosetta, you have been such a dear friend and rock to me in all of this. 

[Dalalea]

2 hours ago, DaveB said:

the point I always get fed up with it and "try" something else

You aren't alone in this pattern, Dave. 

That chart is a great way to look at the last few months in data form. You've been through a lot of changes!

I'd like to see your data for the "manageable days" vs. "difficult days" You talk about both and might be able to see some positive growth trends.

Your encouragement when I'm having anxiety is always so welcome. You have a way of removing the emotional aspect of the "crisis". Looking at your trend data might help you with perspective.

 

It's a long road with many hills and valleys.

Be kind to yourself and give yourself time.

1 hour ago, DaveB said:

but also very much intact so there is SO much to be thankful for!

This says it all!

Dalalea

 

[DaveB]

50 minutes ago, Dalalea said:

You aren't alone in this pattern, Dave. 

That chart is a great way to look at the last few months in data form. You've been through a lot of changes!

I'd like to see your data for the "manageable days" vs. "difficult days" You talk about both and might be able to see some positive growth trends.

Your encouragement when I'm having anxiety is always so welcome. You have a way of removing the emotional aspect of the "crisis". Looking at your trend data might help you with perspective.

 

It's a long road with many hills and valleys.

Be kind to yourself and give yourself time.

This says it all!

Dalalea

 

 

Thanks Dalalea, not sure if there has been much growth to be honest the last couple of months. Maybe a small amount...it is tough to tell. I think, to be honest, I am still suffering from Zoloft withdrawal even though I am on a different SSRI and Zyprexa. Had I just stayed off the meds like you, or simply reinstated a small amount of Zoloft, I could be in a very different state now, but I guess I can't go back. Hopefully the way forward will be less rocky.

[DaveB]

Had a pretty good night last night, but woke to some intense anxiety this morning. So weird, a week and a half ago I thought this kind of morning anxiety was a thing of the past, now it is back bad as ever. Maybe starting to dissipate though now about 11AM.