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Rosetta

Rosetta: CT May 2011 & too fast taper Feb 2017

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FarmGirlWorks

That is totally what is happening with me this week! I do take powdered mag before bed (the Calm brand) and sip on it throughout the day. But sleep is rough. I take a tincture of valerian/passionflower at night and can knock off for a few hours. Wake up around 3 and have intermittent sleep until 7ish. Then headache all day from, I guess, lack of sleep.

 

Listened to Claire Weekes yesterday and really really trying to not activate the "second" fear of the symptom in a sensitized CNS, in this case insomnia. It's hard but helpful when I can do it. I feel you, @Rosetta.

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Waterfall

Oh, Rosetta.  I hope this gets better for you soon.  

You share so many of my symptoms.  Even the ear itching!  

I wish I could take them away for you.  

It will get better.  It will.  

Keep on, keeping on.  

Look for reasons to smile.  

I know how hard it is.  

I wish I could do more for you.  

Right now, I can commiserate.  

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Rosetta

I'm wondering if magnesium is expected to help with cortisol spikes or whether it is only for anxiety?

 

Journal:

Survived the day with only some disappointments, no disasters.  Picked up the kid from school; went to gymnastics (close-by), to a warehouse store and for a burger.  I started to feel ok at about 6:00.  Now to bed at 8:30.  Having eaten protein recently Im hoping there will be only mild cortisol spikes (I'm hoping blood sugar is a contributing factor.). 

 

Does anyone have any ideas about the mechanism for cortisol spikes and how to make them less intense?

 

 

Thanks everyone for your well wishes.  I need them, and I'm grateful. 

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Rabe

I've read that stress sets the body on even higher alert and the cortisol spikes earlier, and higher, to get an early start on a loooong day of 'work', curb sugar/carbs before bed cause that increases the cortisol spikes. I know fish oil is recommended for cortisol but Magnesium seems would help as well because if it helps anxiety and sleep then that would in turn help your cortisol. I think lots of organs are involved (thyroid, parathyroid, adrenals, etc etc) and it is hard to get the system balanced again once its off, as we all know.  I've had trouble with an overactive system and panic attacks forever...and any form of stress made/makes it worse until things reset....but this has been my longest most challenging 'marathon' by far!!!!  Wish was not so!!!!!!  Sleep well Rosetta!!!!

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Rosetta

I woke with less anxiety this morning.  I had a mild cortisol spike very early this morning, and I woke up and worried for a long while.  I heated my shoulder wrap 3 times, and I took magnesium in the night.  

 

Last night, I had a big dinner - a burger at about 7 pm.  I wonder if I can eat protein late and stave off the cortisol spikes.  I might be having a low blood sugar issue early in the morning.  Does that seem logical to anyone?

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Rabe

YES YES YES!!!  Part of Cortisol duty is to help stabilize blood sugar...so not eating sugar before bed would definitely help. But not eating will also cause it to rise. 

When I eat ice cream at night I don't sleep as well...feel better for while but wake up a lot.  

And not only does it stabilize blood sugar but because our systems are on such high alert it tends to over react and sugars can bounce around.  I have had blood sugar issues for quite some time and that's the theory.

Glad to hear last night was better Rosetta...gosh THAT is a real blessing!  Yay!  Think about you so much!!

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bubbles

Rosetta, I do better with more protein and fat in my diet. I've long since given up cereal in favor of eggs for breakfast and I do much better that way. My evening meals are also heavier on the protein side.

 

Glad to hear you had a better morning.

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Rosetta

Thanks @Rabe and @bubbles.  Now to try to actually eat the protein often enough.  

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DaveB
5 hours ago, Rosetta said:

I woke with less anxiety this morning.  I had a mild cortisol spike very early this morning, and I woke up and worried for a long while.  I heated my shoulder wrap 3 times, and I took magnesium in the night.  

 

Last night, I had a big dinner - a burger at about 7 pm.  I wonder if I can eat protein late and stave off the cortisol spikes.  I might be having a low blood sugar issue early in the morning.  Does that seem logical to anyone?

 

That sounds like a good improvement!

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Fightingawar

What is good sources of protein? I get the cortisol spikes in the morning as well. I also feel like I have sugar lows through out the day but last time I had blood work done my glucose was elevated so that confuses me.

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Waterfall
17 hours ago, Rabe said:

And not only does it stabilize blood sugar but because our systems are on such high alert it tends to over react and sugars can bounce around.

 

Oh, Rabe, this makes so much sense!

I have had similar experiences. 

If I eat something sugary before bed, I'm bound to wake up starving and panicky in the middle of the night, 

or with a bad cortisol spike early in the morning, or something similar.  

And I also struggle to make it between meals without eating.  

Even if I do eat, I often feel very sick right before meal times.

What you said makes so much sense.

And it's comforting to know that more of us are having this issue. 

Though I sure wish I didn't have to deal with it.  

It's almost like being a diabetic... and yet not.  

So frustrating.  

 

I hope you are having a better day, Rosetta!

And that you had a good night sleep!

Thinking of you!

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Rabe

Thinking about you Rosetta!

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Rosetta
On May 15, 2018 at 7:59 PM, Fightingawar said:

What is good sources of protein? I get the cortisol spikes in the morning as well. I also feel like I have sugar lows through out the day but last time I had blood work done my glucose was elevated so that confuses me.

 

 Hot dogs, yogurt, cheese, nuts, eggs and bacon.  Hamburger, too, but I don't cook much, and I never cook burgers.  

 

My theory is that your glucose will be all over the board from moment to moment until you are closer to being well.  Testing your blood glucose every hour might tell you something about a particular day, but the outpatient test that the doctor does won't be "correct" if your body is getting random signals from a brain in WD.  

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Rosetta

Journal:

 

Today, in retrospect, was not so terrible.  I had a bad night again -- one cortisol spike before 10:00 pm -- yes 10:00 pm!!  Right after I fell asleep!  I had a bad dream that spiked it in the middle of the night.  Another before I got up.   

 

Im afraid to go to sleep.

 

Activities today:

Took child to school

Breakfast out

Watched netflix

Took a walk at lake

Picked up child

Visted neighbor

Watched netflix

Epsom salt bath

Bed at 8:41 (late)

 

 

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Rabe

Sleep well Rosetta...

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Carmie
2 hours ago, Rosetta said:

Journal:

 

Today, in retrospect, was not so terrible.  I had a bad night again -- one cortisol spike before 10:00 pm -- yes 10:00 pm!!  Right after I fell asleep!  I had a bad dream that spiked it in the middle of the night.  Another before I got up.   

 

Im afraid to go to sleep.

 

Activities today:

Took child to school

Breakfast out

Watched netflix

Took a walk at lake

Picked up child

Visted neighbor

Watched netflix

Epsom salt bath

Bed at 8:41 (late)

 

 

Glad you didn’t have too bad a day Rosetta, 

 

Corticol spikes aren’t fun. 

 

The only reason I’m still sleeping is because I’m on seroquel and it works like a sleeping pill even on low doses. I will eventually end up with rebound insomnia which will be hell so I really feel for you.

 

Like you I also get weird and intense dreams at times. 

 

Looks like you use Neflix as a distraction too. It really is a great distraction. I also buy lots of DVDs. 

 

Hang in there.

 

Sending hugs🤗

 

 

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bheb

Hey rosetta. Also glad your day wasn't terrible, and I share the same fear of sleep. Lying down is the worst for physical agitation (personally).

 

Hope you got some good rest last night.

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Waterfall

Glad to hear you day was not too terrible, Rosetta!

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Rosetta

Journal:

 

Something is changing.  I'm trying to avoid feeling fear.

 

Yesterday was not terrible either.  I volunteered at the school.  Then I went home feeling very sad, but I distracted myself with Netflix.  I fell asleep and then woke up almost immediately.

 

I didn't want to take the 45 minute drive to gymnastics, but I did.  My husband drove and I kept falling asleep in the car over and over.  When we arrived there, I had to stay in the car because I was too sleep, but I couldn't stay asleep.  An hour later I was awake and went to get something to eat with my family.  I was awake while we drove home.  At home, it happened again.  I could not stay awake.  I felt irritable, I wanted to be alone.  I wanted to go to sleep.  At bedtime, I could not wait to fall asleep.  

 

Last night, I had three cortisol spikes.  My first cortisol spike wasn't intense, but it was enough to get me into the loop of worrying.  I heated my shoulder wrap the next time I woke up, and it was 5:00 am the third time I woke up.  I was able to calm myself that last time, and I dozed a bit before wake up time at 6:45.  

 

I thought I would be shaken and easily rattled while trying to get my daughter ready for school.  She was receiving an award at the assembly this morning.  I could not miss it.  I wasn't nearly as shakey and irritable as I expected.  We had an easy morning overall.  Then, I went to breakfast.  I had extra protein.

 

Today, I am feeling very strange.  I can't describe why I feel strange.  

 

Last night, after the cortisol spikes, I worried. I felt such a strong sense of loss, of grief.  I think I try to attach this feeling to something, and I settle on lost photographs.  As if losing the photos means losing the memories.  I am grieving losing the time during which the photos were taken, I believe.  It's as if I can't handle the fact that time is passing.  Does this have something to do with the feeling that I am "dying" - a feeling that I used to have much of the time?  Has it changed into a feeling of losing time?  I have a fear of reaching the end of my life and having to leave my daughter. (I'm in tears.). I suppose this is all a part of neuro-emotions.  It is intensely painful.  

 

Can high cortisol cause these emotions?

 

I feel that my life is pointless and being wasted.  Existential crisis.  I can think about all the reasons my life is not pointless, but I can't internalize them.  I suppose all I can do is distract.  I'm so desperate to feel comfortable and "normal."

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Rosetta

Thanks, @bheb, @Carmie @Waterfall @Rabe

 

I guess I am existing in the past.  I need to find a way to feel comfortable with my discomfort.

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Waterfall

Oh Rosetta, 

I can so identify with these feelings. 

I can identify with the falling asleep thing.  

And also the fear and worry and cortisol spikes. 

The sense of loss.  

I feel like I am wasting my children's childhood, 

and that I'm going to ruin them with my own struggles.  

 

I also know exactly what you mean about telling yourself it's not pointless.

Knowing it, but having trouble -believing it-, and -feeling- it.  Internalizing it.  

I wish I knew how to help you, since it would help me too. 

 

I'm just so glad right now to feel a reprieve at the moment from the fear. 

The heaviness, the gloom and doom and dread and weight of it all.  

I know it will return, but hooray, hooray for windows!  

I wouldn't have believed, after how awful I felt this morning, 

that I could feel this good this afternoon!!

(Good being a relative term, comparing to how I normally feel lately)

 

Know that since I can have a window again, so can you!  

And if we can have one, we can have another!

And if we can have more, they will come more frequently, 

until someday, we'll be living in the windows!  

 

You, more than anyone else, has helped me believe that we'll get there, Rosetta. 

Sometimes I like to go back and read your first post, I think it was.  

The certainty you express, that we can get there.  

It'll take time.  And it's hard to wait.  

But you told me before too, that we aren't doing it wrong, 

we need to just keep on keeping on, and it will come.  

It will.  

Hugs, Rosetta.  

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bheb

Waterfall has some good thoughts! But yes to add on -- I also get these moments of grief for this "lost" time. Not sure how directly related to cortisol spikes, but definitely seems like a response to all of this stress we're under

 

Sometimes these emotions keep me from acting at all, as though nothing is it worth it in this state. And that everything I do will be laced with uneasiness and alienation. You mentioned distraction and that's the only thing I've been able to do about it ...which I think is okay. The more  I struggle and dwell on the grief (even though it's rational in a way) the more it hurts.

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wantrelief
3 hours ago, Rosetta said:

I need to find a way to feel comfortable with my discomfort

This resonated with me, Rosetta.  I have thought about this too and know I need to work on this.  It seems like you are doing what you can being with the discomfort....your ability to have gotten to where you are now in your healing process speaks volumes.  

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Rabe

I read your journal and cried Rosetta and continue to cry...for you, for me, for any of us trying so desperately....struggling so.  For me, I have all my photo albums here with me in this small apartment in a place where I feel so isolated, so far from home, friends, family, support.  I haven't opened them recently but seeing them reminds me that at one time I was happy, free, I felt love and joy and sadness and so much more, I mattered in the lives of others, others believed in me, could rely on me, felt I was deserving of their time and love, would take the time to stay in touch and make the effort to be together.  

I feel none of that now...in a sense I have died...I am none of what I was...I feel invisible...I feel as if I am not here.  If, by God's grace, I am able to navigate this journey, I have no clue who or what will remain at the end.  I miss me and my life that has been so altered by medications that have changed my body, my mind, and if that isn't insult enough, that make me feel sick nearly every minute of every day. I am tired of trying so hard to make it through each day rather than looking at the clock and wondering where did the time go as I was so happily living my busy, full, life that expanded my heart and soul and spirit, that allowed me to give so much because I had so much inside to give...spontaneously and freely.

I never know how I will wake up, what I will be like a minute after I wake up...and then the first medication starts the horrible roller coaster ride that stops only when sleep gratefully comes to stop the ride...until I sleep again...only to start the ride again after a few hours.

The potassium issues secondary to the psych meds and the ill effects of the medication taken for it seem to create a circle that never opens.  There is no one to share everything with because no one can understand...not friends, not family, not doctors...but I am grateful for I would wish this on no one.  So I isolate unless I can be 'acceptable', try to eat and try to believe that I won't miss another once in a lifetime event as I did my son's wedding.  My heart truly broke that day and I wonder if it will ever be whole again. 

I think about you all so much and hold you in my heart.  I miss my butterflies and birds...

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Rabe

and I SO miss seeing and hearing God in my life....

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Rabe

What I really wanted to say is that I care so much about you, Rosetta, and it is so hard to hear your heart speak as it has.

I want to say too that I don't believe you are avoiding fear...you face it every single day...you challenge it and you 

overcome it!  You are strong, dedicated, insightful, introspective...a beautiful soul who shines brightly.  Hugs!!!

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Rosetta

@Rabe I'm sorry that my post brought up those feelings for you.  I can only hope that crying will help you get a release.  You will feel like yourself again someday.  I'm sorry you missed your son's wedding.  I'm glad you have all of us who understand, Rabe.

 

I was able to function today, and it is true that getting out, walking, & getting sunshine helps.  It's between midnight and noon that I feel bad.  Now, I'm tired in that way that I would be if I had a very busy, physical day for days on end. The glutamate problem probably causes that.  It wears me out everyday.  Goodnight.

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Rabe

Please don't be sorry...it wasn't you...they are there.  Maybe good to get them out.  Just feel so defeated over and over again with these health challenges and meds and side effects etc...like on a treadmill going nowhere.  I fear these last years of my life will be only this...

sleep well Rosetta.  Hugs!

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Rosetta

The last two days have not been fun, but I am coping better than I usually do.  I think that's a good sign.

 

Yesterday, I stayed home, but I went for a walk.  I sorted some laundry.  That is a big deal for me -- being able to sort anything.  I usually can't think clearly enough and have intense anxiety if I try to sort.  I ate protein for dinner.  

 

Today, I went to the beach.  I didn't want to walk, but I did it anyway.  I had sunshine and exercise.  Those two things make a difference on most days.  

 

There was an emotional stressor today.  I'm still processing it.  Someone I care about has been hurt very badly, and I'm feeling as if I was hurt just as badly.  I feel very insecure because of it.  I'm trying to deal with it instead of just distracting because I know distracting won't work on this problem.  It's too close to home.

 

There's been a return of the dystonia that has been extremely mild for many days, but is worse the last two days.  I think I'm ovulating.  

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Rabe

You are so strong, Rosetta...sun and water...I can understand why you three go together so well! May the sun bring you the warmth and the water sooth your soul...as you do for others.  Bless you!  Hugs!

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wantrelief

Oh Rosetta, I am so sorry about the person you care about being hurt very badly.  The good news is that you are coping better despite this.  It sounds like you are doing as well as you can under the circumstances.  Thinking about you - WR.

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Rabe

How has today been Rosetta?  Hopefully better than the last 2 days!!  Thinking about you!

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Carmie
On 5/21/2018 at 1:39 PM, Rosetta said:

The last two days have not been fun, but I am coping better than I usually do.  I think that's a good sign.

 

Yesterday, I stayed home, but I went for a walk.  I sorted some laundry.  That is a big deal for me -- being able to sort anything.  I usually can't think clearly enough and have intense anxiety if I try to sort.  I ate protein for dinner.  

 

Today, I went to the beach.  I didn't want to walk, but I did it anyway.  I had sunshine and exercise.  Those two things make a difference on most days.  

 

There was an emotional stressor today.  I'm still processing it.  Someone I care about has been hurt very badly, and I'm feeling as if I was hurt just as badly.  I feel very insecure because of it.  I'm trying to deal with it instead of just distracting because I know distracting won't work on this problem.  It's too close to home.

 

There's been a return of the dystonia that has been extremely mild for many days, but is worse the last two days.  I think I'm ovulating.  

 

Hi Rosetta, 

I’m sorry you’re so ill. I’m glad you got out in nature though, it’s amazing being near the beach. 

 

I was sad to hear about your friend too. Yes, I feel deeply for my friends too when they’re in pain, and going through withdrawals our senses are heightened even more. Hope you’re able to deal with the emotions involved here. I find FasterEFT is the only thing that gets rid of strong emotions for me. Distractin doesnt do a thing, like you said. You can distract yourself but it doesn’t make the emotions go away. 

 

Take care, sending hugs🤗

 

 

 

 

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DMV64
16 hours ago, Rosetta said:

Saving this here

Isn't this great?! I have been listening to it and doing it. I think it is helping!

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DMV64

Thinking about you, hope you are feeling better. xoxo

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