DaveB: trying to stop a roller coaster year

[manymoretodays]

3 hours ago, Rosetta said:

 This ping pong thing must mean you are getting there

 

Hey no problem Rosetta.  I'm on one today..........easily offended by psychiatric labeling reminders.

 

I agree and it helped me to look at the ping pong days......... as healing, healing  toward neurostasis..... and regrowth, and repair days.  Do what you can and do your best.  I was reading a bit more on neuroplasticity today.............

I'll just leave you with this one:

https://beyondmeds.com/2013/01/17/neuroplasticity-enormous-implications/

 

I'm kind of excited because I get to go see Norman Doige speak in a couple of weeks, he has written some books on the subject.  I'm also a bit terrified of being in rooms filled with psychiatrists, social workers, and psychotherapists.  I'll do my best though.

 

Love and peace and growth and healing and there is still beauty........don't miss it...

mmt

[DaveB]

4 hours ago, Rosetta said:

 

@manymoretodays Dave probably got that term from me.  I used "rapid cycling" without realizing it's a term used to describe bi-polar cycling.  I meant it literally -- hours of anxiety followed by relative calm followed by the anxiety coming back relentlessly.  That or one day cortisol awakening and none the next.  It's basically very short windows that are perceptible at the time.  

 

I can't put my finger on why this is more distressing than having long waves that last for days.  Maybe it's simply that I was hoping my longer windows were permanent and the waves were going to become shorter and shorter.  Instead, I'm a ping pong ball suffering everyday almost.  I have no life.

 

Dave, you are going to stabilize.  I can feel it.  This ping pong thing must mean you are getting there.  (For me, I'm not so sure.  It's tracking a different issue that you don't have to worry about.). Try to keep the stress down, rest when you can, and don't let anyone's opinion of your behavior stop you from doing what you need to heal.  Shut your door and listen to meditations.  Leave your office for walks.  Eat when and what you need to.  You are the boss -- take advantage of that and get well.  I'll be thinking of you. -- Rosetta

 

Thanks Rosetta, I feel I will stabilize at some point, but wow this has been a long slog. Not sure why I am still up and down so much with anxiety throughout my day, is this common this far into a hold? Maybe @Gridley or @brassmonkey have some insights on this?

 

[manymoretodays]

Double reply DaveB.  I just replied at the same time.  I'll vote yes, common this far into a hold.

Thinking of you as well........sure wishing you could take some breaks from the "boss" business.  For your family.  For yourself.  Alas, maybe the boys will have some ideas.

Edited March 6, 2018 by manymoretodays

[Gridley]

Yes, as mmt says, up-and-down anxiety is common this far into a hold, also varying cortisol symptoms. That there is good along with the bad indicates the hold is heading you in the right direction.  

[FarmGirlWorks]

On 3/1/2018 at 10:49 AM, Rosetta said:

I keep beating myself up for not pulling myself up and just doing whatever would have resolved this anxiety in the past.  However, when I do pull myself up there seems to be no correlation between my actions and my feeling of anxiety.

Ah, yes: I, too, am dealing the WD brain telling me I am stupid, lazy and apathetic all the time. It is a rough ride and takes a lot of mental fortitude to remind oneself that it is just a healing and still sick brain saying that.

[Gridley]

To me, one of the most important (and healing) attitudes is: be kind and compassionate to yourself. 

[DaveB]

Wanted to document today as being the 1st day in quite a long time (honestly don't know when) that my morning anxiety (cortisol?) was not too bad. It was there, but didn't hit until about 7:15 and was not crushing at all. Just wanted to note a small win for me, seems I tend to only post about things that are not going well. Pins and needle feelings have pretty much gone away again, and my IBS seems to have also settled. If my morning anxiety turns out to be the worst anxiety I have today (like my general pattern) today will be a great day!

[Hazel]

Awesome to hear this Dave!👍

[Shrike]

 

33 minutes ago, DaveB said:

Just wanted to note a small win for me

This is wonderful news Dave thanks for sharing the "win". 

 

I wonder if there is something in the air, I just put up a post on how my cortisol brain has been getting better as well. What else do you think is working? I try not to overanalyze "what happened" but sometimes a quick look back can be helpful in revealing a behavior change from the previous day, etc. Just thoughts...

[powerback]

1 hour ago, DaveB said:

Wanted to document today as being the 1st day in quite a long time (honestly don't know when) that my morning anxiety (cortisol?) was not too bad. It was there, but didn't hit until about 7:15 and was not crushing at all. Just wanted to note a small win for me, seems I tend to only post about things that are not going well. Pins and needle feelings have pretty much gone away again, and my IBS seems to have also settled. If my morning anxiety turns out to be the worst anxiety I have today (like my general pattern) today will be a great day!

Great stuff Dave .

[DaveB]

Well yesterday wasn't as "great" as I hoped it would be in the morning. Anxiety crept up throughout the day and at times was quite strong. However, I woke this morning again to almost NO cortisol anxiety! Not sure what is going on, but two days in a row of a fairly normal morning is incredible for me, something I didn't even know was possible anymore. 

[DaveB]

I have read some stuff by Dr Shipko since I heard his name a bunch on this site. Seems he doesn't really think everybody does get better from this and likens it to TD that never gets better. I guess I shouldn't have read it as it has kind of triggered me a bit, though not too terribly which I think shows my improvement. What are your thoughts on this @brassmonkey @Gridley @Rosetta @manymoretodays @JanCarol? 

 

https://www.madinamerica.com/2013/08/ssri-discontinuation-is-even-more-problematic-than-acknowledged/

https://www.madinamerica.com/2014/07/shooting-odds-revisited/

https://www.madinamerica.com/2015/09/shooting-the-odds-part-iii/

[Gridley]

Dr. Shipko sees the worst-off of the worst-off and he draws his conclusions from his patient base.  

 

 

[Dalalea]

3 hours ago, DaveB said:

this morning again to almost NO cortisol anxiety!

That's encouraging! Praying it's the start of a trend!

[Rosetta]

Whoomhoo!  Two days without a cortisol morning.  That's wonderful, Dave!

 

You may see Altostrata's comments under that article you posted. She gave Shipko a really hard time about that article.  She disagrees with him as to whether people can heal, and she was angry that he was irresponsible in the way he wrote the article.  (The article's conclusion does not apply to your case, Dave.). It could work to dash the hopes of people like us if we are not yet able to understand the idea of reducing the meds/avoiding new meds as a form of treatment.  

 

Hope is the most important thing we have, and if we can get off these meds (or get the dose down low enough) we can allow the CNS to heal.  We can regain our lives but Shipko, who appears to mean well, is a doctor.  He sees people he can't help with more medicine.  So, he sees his patients as very, very difficult cases.  Truthfully, as long as the patient is looking for a doctor to fix this injury, the patient doesn't have much hope.  Every medicine used to fix the patient is likely to re-injure the patient by further destabilizing the CNS.  Even those that might help are likely to be prescribed incorrectly.  If the patient can embrace the idea that by tapering off and avoiding additional drugs he can heal then the patient will heal,* but no doctor is going to be supported by his profession in helping the patient take that road.  This is where what is known as "unpatienting oneself" comes in to play.

 

(*Of course, people with life threatening symptoms such as chronic insomnia may not have the luxury of avoiding all medicine.  I'm not sure what the solution is for that sub-group.)

[DaveB]

2 hours ago, Rosetta said:

Whoomhoo!  Two days without a cortisol morning.  That's wonderful, Dave!

 

You may see Altostrata's comments under that article you posted. She gave Shipko a really hard time about that article.  She disagrees with him as to whether people can heal, and she was angry that he was irresponsible in the way he wrote the article.  (The article's conclusion does not apply to your case, Dave.). It could work to dash the hopes of people like us if we are not yet able to understand the idea of reducing the meds/avoiding new meds as a form of treatment.  

 

Hope is the most important thing we have, and if we can get off these meds (or get the dose down low enough) we can allow the CNS to heal.  We can regain our lives but Shipko, who appears to mean well, is a doctor.  He sees people he can't help with more medicine.  So, he sees his patients as very, very difficult cases.  Truthfully, as long as the patient is looking for a doctor to fix this injury, the patient doesn't have much hope.  Every medicine used to fix the patient is likely to re-injure the patient by further destabilizing the CNS.  Even those that might help are likely to be prescribed incorrectly.  If the patient can embrace the idea that by tapering off and avoiding additional drugs he can heal then the patient will heal,* but no doctor is going to be supported by his profession in helping the patient take that road.  This is where what is known as "unpatienting oneself" comes in to play.

 

(*Of course, people with life threatening symptoms such as chronic insomnia may not have the luxury of avoiding all medicine.  I'm not sure what the solution is for that sub-group.)

 

I didn't see Altostrata's (unrelated note: I wonder if I have done or said something that makes her not like me, she has never posted on my thread) comments, so thanks for pointing that out. Two non-cortisol mornings have been great, I can't believe I am actually saying this, but I wish the rest of my day the last two days would have the same anxiety level as the mornings. So the anxiety is flaring up a few times a day, but mornings have not been one of those times...really weird. I just want one anxiety free day to show myself I am truly on the right track, is that too much to ask? I guess now I am just being stubborn as a few weeks ago I had never had a non-cortisol morning (well in a year), so I would have given anything to experience one. I will take it as a definitive sign of improvement and healing, and look for more to come. 

[DaveB]

3 hours ago, Dalalea said:

That's encouraging! Praying it's the start of a trend!

 You and me both. It is very encouraging, hopefully the rest of the day will start following suit!

[Cheeky]

Dave your doing really well, two morning without anxiety is great, you watch how you will gradually  improve over time.
I wrote to Dr Shipko and told him my situation and his reply was , " if your feeling okay on the drugs, then stay on them", What a wanka of a reply. Don't read too many negative things because it just feeds or anxiety.

Were going to beat this buddy.

[Kristine]

Just now, Cheeky said:

What a wanka of a reply

Just butting in...oh Cheeky! This made me laugh! Such a fabulous Aussie term 

[Cheeky]

1 minute ago, Kristine said:

Just butting in...oh Cheeky! This made me laugh! Such a fabulous Aussie term 

Thanks Kristine, cant take an Aussie Bogan out of me

[DaveB]

So I slept in today! After no cortisol anxiety Wednesday and Thursday I had a pretty good bout with morning cortisol Friday. On Friday anxiety peaked at bout 1-2 PM then subsided to a low level at night. Went skiing with my boys and anxiety didn't interfere much. This morning I woke as usual at 7 with some anxiety, but went BACK TO SLEEP til about 8:15. I have been unable to really do that for a long time, so I am hoping this is signs of me stabilizing. Alas, even when I have had no cortisol in the mornings, I have still been having pretty good bouts of anxiety throughout the day, but I think with these new changes I should be hopeful...right?

[AliG]

Dave ~ that is so hopeful  ~ let's hope it keeps up for you  ~  This can take a good while but it looks very encouraging for you, at this point.

[DaveB]

2 hours ago, AliG said:

Dave ~ that is so hopeful  ~ let's hope it keeps up for you  ~  This can take a good while but it looks very encouraging for you, at this point.

 

Yeah, I am still dealing with pretty strong anxiety throughout the day, but the morning change has been encouraging and has to point towards healing. 

[Ryder]

On 3/9/2018 at 7:02 AM, DaveB said:

I have read some stuff by Dr Shipko since I heard his name a bunch on this site. Seems he doesn't really think everybody does get better from this and likens it to TD that never gets better. I guess I shouldn't have read it as it has kind of triggered me a bit, though not too terribly which I think shows my improvement. What are your thoughts on this @brassmonkey @Gridley @Rosetta @manymoretodays @JanCarol? 

 

https://www.madinamerica.com/2013/08/ssri-discontinuation-is-even-more-problematic-than-acknowledged/

https://www.madinamerica.com/2014/07/shooting-odds-revisited/

https://www.madinamerica.com/2015/09/shooting-the-odds-part-iii/

 

No, the brain is completely malleable. It does heal. it just takes time.

[DaveB]

1 hour ago, Ryder said:

 

No, the brain is completely malleable. It does heal. it just takes time.

 

I totally agree with this statement, though why doesn't it heal sometimes with movement disorders such as TD, Dystonia, and such? Are they that different to what we have experienced? 

[Rosetta]

It's wonderful that you are getting these breaks from the cortisol.  We have had a steady rain here all day.  It's needed.  It's also been soothing to hear.  How about you?  Getting any rain?

 

My dystonia is getting a lot better.  It's absolutely criminal that these drugs haven't been the subject of studies on Lange term effects all these years.  When the scientists said, "We don't know exactly how these work," a civilization that had any sense of self preservation would have required further study until someone had a pretty good idea what these drug do to people.  Apparently, we aren't such a society.

[DaveB]

On 3/10/2018 at 8:36 PM, Rosetta said:

It's wonderful that you are getting these breaks from the cortisol.  We have had a steady rain here all day.  It's needed.  It's also been soothing to hear.  How about you?  Getting any rain?

 

My dystonia is getting a lot better.  It's absolutely criminal that these drugs haven't been the subject of studies on Lange term effects all these years.  When the scientists said, "We don't know exactly how these work," a civilization that had any sense of self preservation would have required further study until someone had a pretty good idea what these drug do to people.  Apparently, we aren't such a society.

Doing pretty good, no rain here, just nice sunny weather. No or very low cortisol in the AM the last two mornings,  I have had some pretty strong anxiety spikes at points in the day, but now that cortisol mornings have calmed down A LOT (didn't think that would ever happen, it has been pretty much a solid year of them) I am hoping some anxiety free days are coming. So even though I still have anxiety really bad at times, I have to think the morning cortisol awakenings fading points to healing and better things ahead.  

[Gridley]

Great to hear, DaveB.

[DaveB]

2 minutes ago, Gridley said:

Great to hear, DaveB.

 

Yeah I am always hesitant to say things are good, because it can change so quickly in all of this, but the non-anxious mornings have been a very nice change. 

[Hazel]

Great to hear you are doing better, Dave.  I also am hesitant to say when things are good because of how quickly things change, but I guess we need to enjoy the good times while they last.  Having anxiety-free mornings is the best!  Almost as good as being able to have a good nights sleep.  Here’s hoping to us getting both🤗

[RachelSusan]

Hi Dave,

 

I am responding to you on your thread.  I just realized that I wrote you on Rosetta's thread, and feel like I wasn't being polite to her. It did give me a chance to say hello to Rosetta though, which was good.

 

I don't know if your sense of the ironic is working but I wanted to share this with you. You mentioned wanting to get off of Zyprexa at some distant time in the future, perhaps even in another galaxy.  Well not knowing what Zyprexa was I googled it. Below is a part of a quote I found:

 

It works by helping to restore the balance of certain natural substances in the brain.

 

Oh my goodness, this is unbelievable, they almost make it sound like it's organic. It sounds like they grew it in a field between the free range chicken and the pesticide free vegetables, rather than it being a very strong chemical.  I hope you can at least laugh a little at this.  If not, then I owe you an apology as well.

 

In the mean time I hope you keep improving.

 

RS

 

 

[DaveB]

Wow I was in a very nice window the start of this week that unfortunately seems to be closing today. When will my window stay open so I can stabilize? Today feels like a real grind it out day this morning, which REALLY sucks as I was feeling so much better, especially in terms of cortisol mornings. Maybe today will surprise me as it is still very early on, but waking to a cortisol morning for no reason really sucks. 

 

Symptoms:

 

Anxiety - I was almost ready to declare morning anxiety a thing of the past, but it slowly crept back in the last few days, today felt much more like a standard cortisol morning which really stinks. I have not had any anxiety free days, but Monday was pretty close, just had a couple pretty manageable bouts. Man I was really hoping this week wasn't just a window and was the stat of lasting stability. 

 

Inability to concentrate or enjoy things - I can enjoy things, but concentration can be tough when it is hard to ignore the anxiety.

 

IBS - Has come back, even through my window. 

 

Oily Skin - Still there, but don't care. May not even be withdrawal related. 

 

Face Flushing and feeling "hot" - Still don't have much of this, maybe on occasion my ears or face will feel hot.

 

Pins and Needles - This doesn't happen much these days, on occasion i will feel the adrenaline in arms and/or legs, but not a lot.

 

Negative Thoughts - So tough to continue to tell yourself it will get better in the midst of anxiety.

 

Sensitivity to Sound - Haven't noticed this for a few days. Maybe weeks.

 

Sensitivity to Smell - Gone

 

Shaking (especially in the hands) - Haven't noticed this for a few days. Maybe weeks.

 

Burning Eyes - Gone, and was actually a real problem at one point.

 

OCD/Intrusive Thoughts - Mostly gone. I get the occasional thought, but they aren't as "sticky". 

[DaveB]

On 3/12/2018 at 6:51 PM, RachelSusan said:

Hi Dave,

 

I am responding to you on your thread.  I just realized that I wrote you on Rosetta's thread, and feel like I wasn't being polite to her. It did give me a chance to say hello to Rosetta though, which was good.

 

I don't know if your sense of the ironic is working but I wanted to share this with you. You mentioned wanting to get off of Zyprexa at some distant time in the future, perhaps even in another galaxy.  Well not knowing what Zyprexa was I googled it. Below is a part of a quote I found:

 

It works by helping to restore the balance of certain natural substances in the brain.

 

Oh my goodness, this is unbelievable, they almost make it sound like it's organic. It sounds like they grew it in a field between the free range chicken and the pesticide free vegetables, rather than it being a very strong chemical.  I hope you can at least laugh a little at this.  If not, then I owe you an apology as well.

 

In the mean time I hope you keep improving.

 

RS

 

 

 

Yes I can laugh at this, thank you. Like I have said, the Zyprexa would be what I would like to taper 1st, but I just can't seem to get stable still. Every time I feel I am making some good progress, I go backwards. 

[Gridley]

 Keep in mind how withdrawal works:  it's non-linear with lots of window and wave activity.

 

The Windows and Waves Pattern of Stabilization

[DaveB]

17 minutes ago, Gridley said:

 Keep in mind how withdrawal works:  it's non-linear with lots of window and wave activity.

 

The Windows and Waves Pattern of Stabilization

I know, I just keep waiting for the window that gets me to a level of lasting stability. Hopefully it is coming!

[RachelSusan]

Hi Dave,

 

It's nice to hear from you. I'm glad your sense of humor is intact in spite of all your tribulations.

 

I did want to mention something about stabilization, at least how it worked for me.  It was a long time before I got completely symptom free.  And yes, going backwards is sadly part of the process. It's soul crushing to feel relief and then wham, we get hit with this stuff once more.

 

Having lived through a lot of the symptoms you have described all I can say is that is indeed pure h*ll.  Even the most empathetic person can't completely understand unless they have experienced it themselves. I feel bad that you are still experiencing this torment. It does get better.

 

RS