Rosetta: cold switch May 2011 & too fast taper Feb 2017

[Kristine]

3 hours ago, Rosetta said:

That made me smile.  Excruciating is a good word for that.  Thanks for making the rounds and giving a little of yourself to us.  

I'm so pleased it made you smile! In fact reading that you smiled, made me smile  ...and ditto to what WR said. Yay!! (((Hugs))) 

[Carmie]

3 hours ago, Rosetta said:

Day 18

 

Had some relief from the emotional stuff today.  Feeling RLS tonight.  

 

Woke with anxiety, but it disappeared quickly.  

Felt more steady for brief moments today.  

Had an appetite today.

 

Thr RLS is making me nervous as if waiting for the second shoe to drop.  

 

Took my daughter to school, picked her up and went to gymnastics and dinner.

 

 

So happy you had some relief from emotional symptoms Rosetta,

 

Great too that the morning anxiety subsided quickly 💚

 

 

[RealMe]

On 4/18/2018 at 12:59 PM, Rosetta said:

Hard night -- pain in right eye, neck -- muscle tension 

Short stints of insomnia

Cortisol awakening early this morning -- twice

Took daughter to school

No appetite - cereal for breakfast

Dystonia, pain in right side of head, eye and neck.

(At least I'm not crying.)

Hi Rosetta,

Funny descriptions of the lovelorn and rapper singers!  I'm sorry you are feeling all of these symptoms.  What is RSL?  

Remember when I said Yay I'm feeling emotions?  Well, I was just on the phone with my oldest daughter, and I lost my temper!  I'm stunned.  Usually, I am ridiculously patient and tolerant with my adult children even when they are short with me; but this time I reacted to some nastiness with an angry retort.  I'm a little confused about how it all went down.  I don't think I apologized, but I might have.  Can't remember.  I hope I didn't.  Oh boy, here come the neuro-emotions.

xo RM

[Rosetta]

@Kristine @Carmie @wantrelief @RealMe

 

Thank you all.  RLS = restless leg syndrome (a cousin of Akathisia maybe)

 

RealMe, hope it's managable

 

Today is anxious, but I'm doing things.  Took daughter to school, took her to a play (school had no bus for the field trip, didn't want to put her car seat in someone else's car) will pick her up and tonight is the talent show.  She'll perform just about the time she should be going to bed -- oh joy.  I'm practicing acceptance, mindfulness, distraction, and feeling pretty yucky.  I'm just trying to get through it.  My husbands says I've made a lot of progress over the last few months.  He says I function better despite how I feel.  I agree, but the battle fatigue!!!

 

 

[Altostrata]

Rosetta, have you tried magnesium oil on your legs? Magnesium in any form can help "restless legs."

[bheb]

Topical magnesium is a good suggestion -- I use mag lotion all over my body for the deep restlessness

[RealMe]

1 hour ago, Rosetta said:

He says I function better despite how I feel.  I agree, but the battle fatigue!!!

This is true for me as well.  Hope all goes well at the talent show!

xo RM

[Waterfall]

Thinking of you, Rosetta. 

Can't think of anything more intelligent to say today.

Just one foot in front of the other, right?

One step.  

One minute.

One hour.  

One day.

At a time.

You're doing a good job. 

[Kristine]

Hey my Friend,   Thinking of you and hoping the talent show wasn't too "excruciating"  Love and (((hugs)) K.....ps. I'll wish apon  a star for you tonight  

[Rosetta]

6 hours ago, Altostrata said:

Rosetta, have you tried magnesium oil on your legs? Magnesium in any form can help "restless legs."

 

Thank you, Alto.  I think I should try that.

 

Thanks @bheb @RealMe @Waterfall

 

The talent show went very well.  I'm tired.  I got through another day.

 

Warning:  Do not read further if you are fragile right now:

I do wish the nights were not so hard.  I used to sleep more solidly when my days were unrelenting Akathisia.  Perhaps I was exhausted.  Now, I wake in the night and feel such intense emotions -- sadness to a profound degree and fear.  I feel as I would feel if someone very close and very important to me had died.  As if my protector had died and I was facing ruin as well as grief.  That's the only way I can describe this feeling.  It's very intense grief much like if I were a small child in a war zone and both my parents had died, and I was aware enough or old enough to understand the degree of danger I faced.  My brain looks for events that would justify this feeling, and I end up worrying that the event is in the future -- as if my emotions are part of a premonition.  I start to worry that my husband or my child will die.  I worry that my husband will die, and I won't be able to care for my child.  I worry that my house will burn down, and I won't be able to save my husband.  I suspect this issue has to do with circadian rhythms, and very early in the morning my brain chemistry is in such a state as it would be if I suffered a grave loss resulting in danger to my very life.  This grief is a feeling that I used to have all day every day, but not at night.  It was mixed up with the feeling of terror.  I'm trying to be grateful that this happens only a few minutes or hours per day.  I try to talk myself out of giving in to the thoughts and the spiral, but I can't distract.  I feel I need to stay in bed in darkness if I have any hope of falling back to sleep.  So, I take my shoulder wrap down the stairs to the microwave, heat it up, and go back to bed.  The warmth actually does help.  It must help to change the brain chemistry, I suppose.  I have to heat the wrap once or twice more in order to get back to sleep.  After it cools, the grief starts to take hold again.  I need to be asleep by then.  I somewhat dread going to bed.  It's a bit like going into a horror movie, but I have no choice.  I must sleep.

 

 

[Altostrata]

Rosetta, have you tried weighted blankets? They seem to calm the nervous system, on the principle of swaddling.

[Carmie]

5 hours ago, Altostrata said:

Rosetta, have you tried weighted blankets? They seem to calm the nervous system, on the principle of swaddling.

 

I’m definitely going to get a weighted blanket Altostrata.

 

Hope it helps you too Rosetta 💚

[Waterfall]

12 hours ago, Rosetta said:

Warning:  Do not read further if you are fragile right now:

 Oh Rosetta.  

I appreciate this warning, because of how I'm doing right now. 

But it's so hard not to read it.  

Because I care about how you are doing too.  

I hope last night was better.  

[Rosetta]

11 hours ago, Altostrata said:

Rosetta, have you tried weighted blankets? They seem to calm the nervous system, on the principle of swaddling.

 

Last night was not so bad.  I had the usual insomnia while it was still dark outside (usually 2:00 am), but I didn't need to heat my shoulder wrap.  I'm sure it would have helped, but I didn't want to turn on lights or even see the light inside the microwave.  I slept late and had a dream that was not a nightmare.  It was uncomfortable, but not scary.  Improvement!!!

 

I am at Day 20 now.  The calm before the storm.  I'm hoping that as it is April this month's PMS will be less severe.  

 

Alto, I see others discuss weighted blankets for Akathisia.  It sounds like a good idea.  I sometimes put my shoulder wrap, which is heavy, on my chest while I lie down.  It seems to calm me some.  Thanks, Alto.

 

@Carmie @Waterfall. Thanks for stopping by.  

 

I ENJOYED the talent show.  The energy in the room with all the parents there made it much better than rehearsal.  I had forgotten about that difference in experiences.  My daughter didn't freeze or forget her lyrics.  She was adorable and received a lot of compliments.  She was one of only two kids in her classroom to participate.  I was relaxed and happy through the performance.  That was nice to have good emotions!!  

[DaveB]

22 hours ago, Rosetta said:

@Kristine @Carmie @wantrelief @RealMe

 

Thank you all.  RLS = restless leg syndrome (a cousin of Akathisia maybe)

 

RealMe, hope it's managable

 

Today is anxious, but I'm doing things.  Took daughter to school, took her to a play (school had no bus for the field trip, didn't want to put her car seat in someone else's car) will pick her up and tonight is the talent show.  She'll perform just about the time she should be going to bed -- oh joy.  I'm practicing acceptance, mindfulness, distraction, and feeling pretty yucky.  I'm just trying to get through it.  My husbands says I've made a lot of progress over the last few months.  He says I function better despite how I feel.  I agree, but the battle fatigue!!!

 

 

 

Good to see your husband sees progress despite feeling yucky. I know what you mean about battle fatigue. I think my latest wave has realy kicked me in the butt simply due to the battle fatigue. 

[Kristine]

Hey Rosetta, Just popping by to let you know I'm thinking of you and hoping you are experiencing some kind of window even if it is a "dirty window"  oh, you must have felt soooo proud of your daughter! How wonderful  and I'm so pleased you enjoyed the show and experienced "good emotions". This is truly very encouraging news! Sending you big (((hugs))) across the oceans. Much Love K xo 

[Waterfall]

So glad you were able to enjoy the talent show, Rosetta!

And that your daughter did a good job as well.  

Also glad to hear you had a better night.  

It's always nice to see any improvement. 

Here's hoping for another even better night tonight. 

Sending best wishes, 

Waterfall. 

[Rosetta]

Today being Saturday my daughter's friend came to play.  They have fun together.  I get a break from being "on," and she's not watching tv or whining or . . . 

 

I had a strange day.  It wouldn't be strange for someone not in WD.  I was on the couch trying to enjoy feeling somewhat "normal" for a change without over doing it.  We had gone out to a late breakfast.  We bought the big plastic bins I need to get all this clutter tucked away.  My daughter's friend had left.  My daughter wanted me to do a craft with her.  I thought I would try, but asked her to wait until I finished reading something.  She whined a bit.   I told her to be patient and I would when I finished what I was reading.  She couldn't wait.  She started to whine more.  We had a tense conversation about patience.   Then, she misplaced her scissors while she waited, and started to whine about that.  Whining sets off my damaged systems if it goes on too long.  

 

Finally, I got up to help her find her scissors and ended up organizing her toys in order to find them.  I spent hours organizing.  That's good news, I suppose.  It's been a very, very long time since I could organize without getting overwhelmed, intensely anxious and having a melt down.

 

I did get pretty anxious and frustrated, but I didn't melt down.  The whining went on because I couldn't find the scissors and then she lost her tape in the meantime.  My brain worked well enough to organize a lot of toys and craft supplies.  Now, I feel spent, and a little scared that there will be a consequence.  I'm trying to self talk.  We never did the craft.  That makes me sad.

 

However, this is all a good sign that my brain allowed me to organize.  Too bad it won't last.  I would like to get the house in order.   I think it would relieve a lot of daily stress if I had an orderly house.  However, just this one day has been tough.  I was tense all day and the dystonia in my throat is back.  Writing this has made it worse -- my face is numb.   I hope I'll sleep okay tonight.

 

Onward.

 

Symptoms:

Slept late

No cortisol awakening

Night wasn't too bad with negative thoughts

Poor appetite today

Diarrhea

Burst of energy -- organized toys

Improved cog function

Tense, stressful day with a bored kid 

Dystonia returned after organizing

 

 

[wantrelief]

1 hour ago, Rosetta said:

I spent hours organizing.  That's good news, I suppose.  It's been a very, very long time since I could organize without getting overwhelmed, intensely anxious and having a melt down.

This is such a great sign of your continued recovery, Rosetta!  

 

1 hour ago, Rosetta said:

However, just this one day has been tough.  I was tense all day and the dystonia in my throat is back.  Writing this has made it worse -- my face is numb.

Ugh, I am sorry to hear you've had this tension and pain. I wish it were all good news.....someday it will be!!  

[Rosetta]

@Waterfall @Kristine @DaveB @wantrelief

 

Thanks to all of you.  Writing here is making dystonia so much worse.  I must stop, but thank you all for visiting.  It means so much.  My sleep wasn't too disturbed last night.  I'm going to try to get sunlight today.

 

I did not eat enough yesterday.  

 

Cortisol spike this morning -only one

Felt ok until I started reading and writing

Now, tingling, numb in face.

[Frogie]

10 minutes ago, Rosetta said:

@Waterfall @Kristine @DaveB @wantrelief

 

Thanks to all of you.  Writing here is making dystonia so much worse.  I must stop, but thank you all for visiting.  It means so much.  My sleep wasn't too disturbed last night.  I'm going to try to get sunlight today.

 

I did not eat enough yesterday.  

 

Cortisol spike this morning -only one

Felt ok until I started reading and writing

Now, tingling, numb in face.

I'm glad your sleep was better.

 

Hope your tingling lets up soon.

 

Take care,

Frogie xx

[Kristine]

Thinking of you Rosetta and hoping you are able to get some well deserved rest. (((Hugs))) K xo 

[DaveB]

On 4/21/2018 at 9:20 PM, Rosetta said:

Today being Saturday my daughter's friend came to play.  They have fun together.  I get a break from being "on," and she's not watching tv or whining or . . . 

 

I had a strange day.  It wouldn't be strange for someone not in WD.  I was on the couch trying to enjoy feeling somewhat "normal" for a change without over doing it.  We had gone out to a late breakfast.  We bought the big plastic bins I need to get all this clutter tucked away.  My daughter's friend had left.  My daughter wanted me to do a craft with her.  I thought I would try, but asked her to wait until I finished reading something.  She whined a bit.   I told her to be patient and I would when I finished what I was reading.  She couldn't wait.  She started to whine more.  We had a tense conversation about patience.   Then, she misplaced her scissors while she waited, and started to whine about that.  Whining sets off my damaged systems if it goes on too long.  

 

Finally, I got up to help her find her scissors and ended up organizing her toys in order to find them.  I spent hours organizing.  That's good news, I suppose.  It's been a very, very long time since I could organize without getting overwhelmed, intensely anxious and having a melt down.

 

I did get pretty anxious and frustrated, but I didn't melt down.  The whining went on because I couldn't find the scissors and then she lost her tape in the meantime.  My brain worked well enough to organize a lot of toys and craft supplies.  Now, I feel spent, and a little scared that there will be a consequence.  I'm trying to self talk.  We never did the craft.  That makes me sad.

 

However, this is all a good sign that my brain allowed me to organize.  Too bad it won't last.  I would like to get the house in order.   I think it would relieve a lot of daily stress if I had an orderly house.  However, just this one day has been tough.  I was tense all day and the dystonia in my throat is back.  Writing this has made it worse -- my face is numb.   I hope I'll sleep okay tonight.

 

Onward.

 

 

Wow, I think all of this sounds like things moving in a positive direction. Good job on organizing and getting things done. I haven't asked, how are you doing compared to January? I know you feel you made a big breakthrough in November or December. 

[Rosetta]

Another couple of strange days.

 

Yesterday, I helped my daughter organize her Legos for at least a couple of hours.  My second day in a row of focus, organizing and planning! I was anxious in the morning.  The dystonia and numbness went away after I quit reading and writing.  We stayed home all day.  We went to bed late.  I slept reasonably well except for the early morning insomnia.   During insomnia I was sad rather than anxious.  I was feeling the "something terrible is happening" feeling, and missing people and pets who have died.  I was able to go back to sleep with two trips to heat my shoulder wrap.  I wasn't in much pain, but I woke up with some in my jaw.

 

This morning, I woke up feeling less dread than usual and less anxiety than usual.  I've been very low energy today, but I made

plans for my daughter's birthday cake!  I made plans!!  I was able to think and plan!  I looked up Lego Elves figurines to put on the cake. (Lego Elves are part of Lego's attempts to make girls want the products -- elves that ride dragons and have magical powers with regard to the classical elements, earth, wind, fire and water.  Just in case you were on the edge of your seat with curiosity. Oh, and the building sets are ridiculously expensive, of course.  So, she gets figurines for this round.  She has tons of Legos for building, and she loses crucial parts too often.  So, not this round.)

 

I picked her up from school and went to gymnastics.  Here comes the strange -- very strange -- part.  I fell asleep in a hard chair while watching gymnastics!  Dead asleep.  My daughter tapped on the glass between us to wake me up, and I jumped.  When I jumped, I didn't have a cortisol spike!!

 

I believe this is all related to my cycle, and that I'm at a wonky place before the estrogen causes issues.  Could it be that my SNS is starting to calm down?  I can't hope for a cessation of my anxiety nor for cessation of the cortisol spikes.  I would be crushed when they come back if I hoped for that, but maybe I'm getting closer to that day. @Dave So, apparently I am seeing an improvement since January.  If only it were permanent . . .  The fatigue is pretty extreme, however.  I feel and walk like I'm 80, but I'm very grateful to have a day when I felt I could relax a bit

 

Note: I was pretty obsessive about finding the figurines.  I spent a lot of time trying to figure out which ones to buy.  I was tempted to spend too much money just like when I was collecting too much stuff while on Zoloft, but I kept it in check with no problem.  Obviously, my brain is changing.  I simply wish it were a linear process, and I could feel secure right now.

 

Very mild anxiety

Very mild dystonia despite using iPad a lot today

Greatly improved cog function

High muscle stiffness, aches

Low energy

Fell asleep in public!!!

 

 

[wantrelief]

It was exciting to read about the cognitive improvements you are experiencing, Rosetta.....the creativity involved in coming up with the idea for the cake and doing all of that research - really wonderful!  And also the news about falling asleep in public....I would think your CNS would have to be in quite a relaxed state to do that.  Very happy for you with these recent developments!  

[Kristine]

10 hours ago, Rosetta said:

 I was able to think and plan!

 Yippee! I bet it will be an awesome cake as well  I mean, topped with elves that ride dragons...doesn't get much more awesome than that  you made me laugh when I read you fell asleep in public  Love to you my friend. K xo 

[Rosetta]

Day 23

 

Slept ok -- didn't wake up until 4:00 am

No cortisol awakening

Woke up with not much anxiety

Felt extremely low energy, but went out to get things done

Achy muscles and joints

Tummy cramps

 

I bought the ingredients for the cake decorations, and I made the decorations with my daughter.   It was stressful, unfortunately, but we got some done.  I wish it could have been fun.  It started out fun, but there were complications.  So, I've had to make some  changes to the plan for the cake.  It's ok.   Being able to let go of a plan is something that I used to resist, and I think this shows progress.  WD made it very hard for me to accept that a plan was not working out, and I used to become very angry about having to change.  Today, I didn't like it, but I was able to avoid getting angry, and I accepted that the plan had to change.

 

Tomorrow,  my daughter goes on a field trip on a bus.  I would go, but I'm too fatigued.  I know I'll be worried the whole time that something will happen to her if I'm not there.  Nonetheless, I don't have the energy to go.  We celebrate her birthday on Saturday, and I need to be in decent shape for that.

 

@wantrelief @Kristine Thanks for stopping by.  I'm headed to bed now.

[Kristine]

7 hours ago, Rosetta said:

Being able to let go of a plan is something that I used to resist, and I think this shows progress.  WD made it very hard for me to accept that a plan was not working out, and I used to become very angry about having to change.  Today, I didn't like it, but I was able to avoid getting angry, and I accepted that the plan had to change.

This shows so much progress Rosetta. I know it hasn't been a pleasant day but nevertheless it is progress.  I think half the battle sometimes is 'noticing' the progress because it is so painfully slow. You are always able to show such great insight...you are an inspiration my friend and it is the greatest pleasure to have "met" you. Much Love. K xo 

[DMV64]

Being able to let go is HUGE! I started to except that I cannot function the way I used to function, but then I am functioning and that the level is OK. I think I was making myself much worse by trying to push it all the time.

[Dalalea]

19 hours ago, Rosetta said:

Being able to let go of a plan is something that I used to resist, and I think this shows progress.  WD made it very hard for me to accept that a plan was not working out, and I used to become very angry about having to change.  Today, I didn't like it, but I was able to avoid getting angry, and I accepted that the plan had to change.

 

Tomorrow,  my daughter goes on a field trip on a bus.  I would go, but I'm too fatigued.  I know I'll be worried the whole time that something will happen to her if I'm not there.  Nonetheless, I don't have the energy to go.  We celebrate her birthday on Saturday, and I need to be in decent shape for that.

This sounds very healthy, Rosetta! You are working within what energy you have and adjusting so you will last through both planning and party. Pushing for a particular plan amid difficulties isn't always the most enjoyable anyway. I'm glad you could let go of the part that won't work to make the rest of the event doable and enjoyable.

You're being a great model for your daughter.

I hope the party is a success!

Dalalea xx

[Dalalea]

Oh my goodness! My computer messed up and I posted the same thing several times! So sorry! Maybe an admin will tell me how to delete the duplicates! Sorry Rosetta!

 

[Rosetta]

@Dalalea @wantrelief @Kristine @DMV64

 

Thanks for your comments.  I hope it shows something positive -- that it means I'm returning to myself.   That I will recover sooner.  There's some feeling of mania and OCD involved.  I can feel it, but it's very much under control.  I suppose we will "over correct" a bit as we heal.  

 

My daughter came home in one piece.  I think she's tired.  

 

I walked a long way today.  I'm tired.  I wish I could take a nap, but I need to order the icing for my daughter's cake.  The meringue buttercream I make is better, but I don't have the energy, and I'm scared I'll go deeper into the wave at any minute.  Just baking the cake will be tough.  Too fatigued.  I was very anxious and crying this morning.  It passed and then came back again twice more.

 

Awake in the night many times - anxious

Early morning cortisol spike that was less severe than usual

Woke up very anxious

Late breakfast

Went for long walk

No lunch

Very tired

Almost fell asleep at about 1:45 pm

 

[DMV64]

Hey there. I also had an anxious day. Took a nap and that helped some. Morning was bad though...it is hard to see my way through it sometimes. 

[bubbles]

Hi Rosetta

 

It's hard when we have a bad day.  I hope you're feeling better now.

I was curious about your meringue buttercream so I looked it up. It does look like a lot of work, though it looks good. I usually use a plain buttercream, which admittedly doesn't look as good, but which is a lot less work - beat up butter, add sifted icing sugar in stages, continuing to beat. Can add a bit of vanilla essence if desired, and a teaspoon or so of milk if you want it a little softer. Just an alternative in case you didn't have time to order your icing.

 

Best wishes

Bubbles

[Rosetta]

@bubbles Thanks!  The cake is done!  Today was a clear window!!  Finally.  Now, if this window will last through tomorrow's celebration of my daughter's birthday . . . that would be great.  (Oh, how I wish I could this way all the time!)

 

I am having restless legs syndrome most nights.  

 

Sleep night before last was very broken, but sufficient.  Getting back to sleep was easier. Anxiety in the night was bad when I was awake.  I heated my shoulder wrap numerous times.    I woke up with anxiety as happens almost everyday. 

Yesterday, I went for another long walk, the second day in a row.  

 

Last night, I had RLS before going to bed.  I slept ok, but with the usual awakenings and ruminations.  I was able to go back to sleep as usual, and I heated my shoulder wrap only once.  I think I woke up twice or thrice.  Once was at about 6:00 a.m.  

Today, I felt markedly less anxiety.  I woke up with anxiety, but it was less intense.  I went to breakfast, and then to get the final materials for the cake.  My friend came over with her huge dog and her 4 year old.  I felt anxiety while she was here, but I baked half the cake, too.  When she left, I baked the other half (I have one square pan instead of two).  Then, I went to pick up my daughter, and we decorated the cake.  This experience was entirely different from making the decorations on Wednesday.  I felt almost no anxiety at all -- even when my daughter spilled the candy flowers jar on the floor Twice!!

 

I'm daring to hope that I am turning a corner on the anxiety!

[wantrelief]

4 minutes ago, Rosetta said:

Today was a clear window!!

This is fantastic news, Rosetta - so happy for you!!