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

[wantrelief]

Hi Rosetta - I am so happy you feel like you are coming out of your wave.....yay!

[Rosetta]

Thank you @wantrelief @Rabe @Hibari @Carmie @DMV64 @FarmGirlWorks @Cheeky @Sheera @neroli @mirage

 

Thanks for being there for me through this setback.  It means so much to see your messages and feel understood and cared about.

[neroli]

oh, Rosetta, If I've been there for you in any way, that makes me happy. 💜  We all understand and care about how you are doing - we are fellow travellers, so we know what it's like.  I'm really hoping you see a turn round a corner and emerge from this latest wave in a better position soon.  You are a great support and inspiration for many on this site - how you manage to extend that generosity while you are particularly affected is a great feat of strength.  

 

Tons of good wishes coming your way...........

 

Neroli

 

[Rabe]

I was reading some of your wisdom....I had not been here for a bit and read your posts from last week.  I am so so sorry you have had such a huge wave....but grateful that is seems to finally be receding. I believe your daughter is and will be ok Rosetta.  You are there with her, I believe she understands you are not well right now, and I believe you will get beyond all this and there will be much more goodness to follow.  I dont think it is by chance that she reads beyond her grade and does so well in school...you have been there for her...it may not seem like it but you have.  You are devoted to her and she will truly truly know that someday. 💜 

[Rosetta]

Journal:

 

Today has been very, very hard.  I woke up with one or two cortisol spikes in the night.  They were a little less intense than the night before.  I still felt the hot flashes.  There was less nausea.  There was a cortisol spike this morning, too.  It wasn't intense, but the anxiety built up afterward.  I really just had to hunker down on the couch all day.  I hoped the anxiety would wear off.  It didn't.  

 

I wanted to take my daughter and her friend to the zoo, but I couldn't.  They played here all day, and I became more anxious as the day progressed, not less.  

 

My husband was digging holes outside for something.  They had a post hole digger and a trencher, and were making a lot of noise. I think the fact that I had no appetite and forgot to eat made the anxiety worse.  Right now it's 6:30, and I'm slightly trembling from anxiety.

[Cheeky]

32 minutes ago, Rosetta said:

Journal:

 

Today has been very, very hard.  I woke up with one or two cortisol spikes in the night.  They were a little less intense than the night before.  I still felt the hot flashes.  There was less nausea.  There was a cortisol spike this morning, too.  It wasn't intense, but the anxiety built up afterward.  I really just had to hunker down on the couch all day.  I hoped the anxiety would wear off.  It didn't.  

 

I wanted to take my daughter and her friend to the zoo, but I couldn't.  They played here all day, and I became more anxious as the day progressed, not less.  

 

My husband was digging holes outside for something.  They had a post hole digger and a trencher, and were making a lot of noise. I think the fact that I had no appetite and forgot to eat made the anxiety worse.  Right now it's 6:30, and I'm slightly trembling from anxiety.

Rosetta I just hate knowing your going through this, I know 10 days sgo

when I was in a wave, I felt like I just couldn’t handle it . This is such  torture to have to go through and it can make every minute a struggle.

The only good thing to this for you is your not taking anything and your waves are a sign of healing. Your going to look back at this one day and it wil only be a memory 

Every day your closer to being you again.

sending you Lott’s if hugs

[Rabe]

I hope you were able to eat Rosetta...I wonder if some of the trembling was a lower blood sugar?  

I so feel for what you are going through.  It is awful and it is a minute by minute day....and long days.  I so hope you can get some sleep tonight and that tomorrow is even a little better.  It is hard when in the waves to think that yesterday or a few days ago or a week ago things were better...but they were.  This will get better as well.  Wish I could give you a hug...it is a lonely scary place as well.  We are all here for you.  Please take care!  XO 💜

 

 

[Sheera]

@Rosetta thank you for the tip on the @.  very helpful info. I am hoping today is better for you. It sounds like we have tried the same tactics only to have them backfire. I think—oh I need a day of being on the couch, I can just sit and accept—and then for some reason it just makes my anxiety worse.  Especially when my kids are off without me. I want to be happy that they are entertained but all it does is make me anxious and then I feel paralyzed and it continues to get worse. Sigh. Your daughter is blessed to have such a strong mother. She will remember that. When I get to worrying I try to remind myself that God picked exactly the right mother for them. He knew what they needed and knew what I could give. You’re doing the best you can right now. Now I’m going to go and try to heed my own advice. 

Hugs—Sheera

[Rosetta]

I had a very hard night.  I woke up from what I think was a cortisol spike in the dead of night, again.  The hot flash, the nausea, the seemingly endless worrying.  This time there was intense grief and crying.  The type of grief one feels if someone close died.  This made me worry about my daughter, my husband, how I will take care of my dsughter if my husband dies, on and on.  Low blood sugar maybe?  My body isn't operating properly.  I didn't eat much yesterday, but I choked down as much as I felt I could.  

 

This is morning there was more crying.  I want to be with my daughter today.  My husband wants to take her to see her grandmother.  I'm going to try to go with them, but I don't want to get ready, I don't want to see his mother.  I wish there were an easy way to so end time with my daughter when I'm in a wave.  Of course, nothing is easy.  Everything feels wrong, off, strange, uncomfortable and sometimes scary.  I miss being able to be with my daughter.  She's growing up.  She's slipping through my fingers.  Meanwhile, I feel like I'm dead.

[Rosetta]

My daughter stayed home with me because she didn't want to leave me.  We played a board game.  That was nice although the anxiety never left.  We did have some nice moments together.  Then I read her a book at bedtime as usual.  

 

I had three cortisol spikes between the middle of the night and when I woke up this morning.  I'm a wreck today.  Eating dinner before bed (with plenty of protein) did not help at all.  My husband thinks that the change of seasons/sunlight angle is the culprit.  Any Mod think that's likely?

[Rabe]

4 hours ago, Rosetta said:

My daughter stayed home with me because she didn't want to leave me.  We played a board game.  That was nice although the anxiety never left.  We did have some nice moments together.  Then I read her a book at bedtime as usual.  

 

Hi Rosetta...I am SO happy to hear that in spite of the anxiety you and your daughter captured those special moments that you so desire for the both of you!!!  Think about you always.  Take care.💜

 

[Rosetta]

I'm doing very poorly.  Cortisol spikes every night are destroying me.  I have to stay on this Earth for my daughter.

[Sheera]

Rosetta—thinking about you. Hugs to you during this wave. Know that tonight could be the night for better sleep. It will get better. 

 

Sheera

[wantrelief]

I am thinking about you too, Rosetta, and sending big big hugs - WR.

[Rabe]

  Hi Rosetta...how hard it is to function just with the symptoms but add no sleep and it is so hard on the body.  Praying relief comes your way soon!  💜

[Cheeky]

Thinking of you Rosetta, please hang in there and just know your going to be okay. 

Im here for you xxxxxxx

[neroli]

Hello Rosetta

 

It's very tough when the symptoms push you so far to the end of your tether.  I'm rooting for you as you have done for me.  Be as gentle as you can with this wave and the thoughts that are coming up for you.  Things do change - it's a roller coaster.  

 

You're in my thoughts today and hoping you get a break.

 

Neroli 💜💜

[Carmie]

Hi Rosetta, 

 

Im so very sorry you’re struggling so much. Just wanted to tell you I’m thinking of you n hope this wave subsides soon. 

 

Sending you many, many hugs🤗🤗🤗🤗

[Rabe]

Praying you got an ounce of relief today, Rosetta.  You have been on my mind and in my heart all day.   Love and hugs!!! 💜

[Rosetta]

@Sheera @wantrelief @Rabe @neroli

@Cheeky

@Carmie

Today, the anxiety was nearly non-existent.  Instead, I had muscle tension pain in my head, cheeks, jaw, shoulders and neck.  I was irritable and achey all over.  Still am.  I had a terrible night full of cortisol spikes, hot flashes, cold flashes and muscle aches.

 

I have no idea why I woke up without anxiety.  Very, very odd as I thought it was caused by cortisol spikes and high cortisol.  To wake up without a cortisol spike after one or two bad ones in the night?  Bizarre.  That seems like something a neurologist and an endocrinologist could study in order to find a tre at me t for this syndrome or at the very least in order to explain it and help us all be treated like patients instead of being ignored, disbelieved and harmed further by the prescription of substances our bodies can no longer process.

 

However, I was able to get my daughter to school, eat breakfast and lunch, go for a decently long walk, shop for my daughter's Halloween costume, and help my daughter with her homework without melting down.  That's quite a list.  Driving was the hardest part.  I'm achey tonight, of course.

 

Thank you all for your kind notes here on my thread.  I am so appreciative!

 

 

 

 

[Rabe]

3 hours ago, Rosetta said:

However, I was able to get my daughter to school, eat breakfast and lunch, go for a decently long walk, shop for my daughter's Halloween costume, and help my daughter with her homework without melting down.

 

I was SO happy to read this Rosetta!  You are remarkable!!  A blessing today...grateful for you here and for your day today!!  You are so special!💜

[neroli]

Goodness, Rosetta, that's a substantial list for one day!  So pleased that you got a break from the anxiety.  I know there are countless other symptoms that you are having to cope with but a break from anxiety is so wonderful.

 

💜

[Rosetta]

Thank you Rabe and Neroli.  It was a break I desperately needed.

 

Last night, in the middle of the night, I was awakenby acortsol spike.  After it wore off I had some time when I felt completely at peace.  It was such a strange feeling - surreal. And it made me anxious in a superstitious sort of way.  "Don't enjoy this or it will be taken away."  I have my mother to thank for that -- any time I found peace or happiness she set out to ruin it.  The feeling ceased quickly enough, but I did enjoy it for a while.  Then, my legs started to feel electrified, and my daughter woke up at about 3:00 unable to sleep.  I got milk for her twice, and we both fell asleep again.  

 

I woke up up this morning with a massive cortisol spike -- the nausea afterward was pretty strong.  The anxiety is still with me.

 

I had to let my daughter sleep in today.  She's coming down with something.  Now it's time to get her to school.  

[Sheera]

Rosetta—I’ve been thinking about you. I know what you mean about the peace and then analyzing it. It’s so fleeting that we want to appreciate it but we know what is coming next. I have felt the exact same symptoms. I think this is how we will eventually be most of the time but because it’s so foreign to us right now we can’t even comprehend it. How beautiful will it be when all (most) of our moments are peaceful and we won’t be living the life in our head and trying to put in a brave/happy front for everyone. 

 

Sheera

[Rabe]

Rosetta Im sorry your night was not restful...I agree with Sheera...peace is a lovely thing to think about but hard to imagine when in the tide.  Take care Rosetta.  Hope your daughter gets well. 💜  

[Rosetta]

Voluntary and involuntary muscle dysfunction caused by destabilization (dysautominia)

 

I think that almost all our symptoms are caused by the brain failing to signal when it should or signaling when it shouldn't.  I believe that lead legs is caused by the lack of a signal from the brain.  I used to have "lead legs."  I would try to tell my legs to move, and the legs didn't follow through very quickly.  I think that's because the brain couldn't follow through.  We have voluntary and involuntary muscles.  Both are affected by destabilization aka dysautonomia.  If the proper hormones, neurotransmitters, etc are not available, our bodies don't work properly.  This is true whether we are trying to use our legs (voluntary) or our bowels (involuntary) or our hearts (involuntary) or our lungs (involuntary).  Shortness of breath, taking a sudden big breath, feeling our hearts being "zapped," having bathroom troubles -- all these symptoms are due to involuntary muscle dysfunction.  I think that voluntary muscle dysfunction occurs as well, and not only in the form of spasms or dystonia or dyskinesia.  

 

So many of my symptoms have come and gone and come again, but not the lead legs.  They haven't returned I. A long while.  Sometimes, I feel slightly like lead all over, but I get up and do the minimum without that strong feeling that I'm walking uphill.  It's a weaker feeling of being unable to move as quickly as I intend to move.  I've been struggling with my voluntary muscles twitching, spasming, or becoming hard as rocks, as well as my involuntary muscles failing to work or the opposite -- stranding me in the bathroom for a hour -- although I've been off meds 20 months.  It's slow going and the improvements are slight.  The symptoms come and go.  Very frustrating, but I do believe it's getting a tiny bit better every so often.

[Rabe]

3 hours ago, Rosetta said:

Very frustrating, but I do believe it's getting a tiny bit better every so often.

 

Im SO happy to read that, Rosetta.  Really believing there has been progress is so nice to hear...I am SO grateful that has happened for you.  💜

[kelly7]

Hi Rosetta I am 11 weeks post discontinuing zoloft. I've experienced many many symptoms but for the last 2 months extreme insomnia and panic during the night I don't go to sleep at all. It's debilitating and the only reason I'm now considering medication options again to make it go. My mood is seriously low and my anxiety is unmanageable. You talk about insomnia can you relate? Is it a wd symptom? It's like my brain is awake unable to rest I've got tinnitus really bad too. 

 

Looking for encourage ment and words of advice 

 

Kelly 

[Rosetta]

@kelly7 Hi.  I tried to write on your thread.  (Oops!  Ignore this: For some reason your thread is in Success Stories, but one of the Moderators will move it to Introductions and Updates soon.)

[Rosetta]

Last night was horrible and so was the night before.  The night before last, I had two intense cortisol spikes through the night and woke up with one in the morning,  I woke up feeling hot, sick to my stomach and SI.  

 

Last night, in the middle of the night, I had a terrible, terrible cortisol spike that made me cry for an hour.  Intense SI.  Nausea. Hot then cold then hot then cold.  I felt my life has been one continuous misery and that it will never improve.  Then, I had two more cortisol spikes and with each one I felt despair, nausea, hot and cold and SI.  Today, I've been up for about 2 hours and I still feel sick to my stomach and depressed.

 

During the day yesterday, I was nervous, but went to a friend's house in the evening and felt ok.  I've been eating although during the day I have to forced food down.  I've been having plenty of protein, but it doesn't help with the cortisol spikes.

 

I don't know what to do.  I feel like I'm having heart attacks.  I mean that -- they feel like heart attacks.  How can I continue like this?

[wantrelief]

Oh Rosetta - I really really wish I could take all of this away for you.  You are going to be ok....it just takes way too much time, but this is going to get better.  Hang in there - you are doing really great getting through this awful time.  I am thinking about you - WR.

[FarmGirlWorks]

That all sounds horrible and HARD. You can get through this (yet again) and will recover eventually. A wise person (you) once propped me up when I was having a particularly low time by saying, "It will end and before it ends it will get better." I hope it gets better for you soon.

[Rabe]

Oh Rosetta I don't even know what to say.  I care so much...this forum is riddled with your wisdom, insight, kindness, and strength.  Please garner all that and get through today knowing tomorrow could bring the tiny bit better that you spoke of yesterday.  We are all here for you!!! 💜  

[Rosetta]

@wantrelief @Rabe @FarmGirlWorks  Thanks for caring.  

 

I had four contisol spikes last night including one when I woke up.  They weren't mild, but they weren't severe.  I felt SI in the night, and when got out of bed I just felt hopeless for hours.  My neck and shoulders are starting to seize up and ache.  I feel sick to my stomach.  I took magnesium when I got up and almost immediately had diarrhea.  Now, after a hot bath and a shower I feel human again.  If I weren't so tired I might feel that I could do something about all the chores piling up.

 

I really want this to end, and until about 2:00 each afternoon, I barely care how it ends except that my daughter shouldn't be devastated, too.  So, I'm trudging on.  Taking painkillers or benzos would be so tempting if I had any.  I'm pretty sure they would only make this worse long term anyway.  I think about taking Benadryl, but I'm afraid that is what caused this wave to be so intense.  That's probably not true.  I feel that I could go on with more ease if I knew this whole experience would end soon, of course.

 

I was able to take my daughter to a Halloween party last night.  She had fun.  The woman who hosted it must have spent a lot.  She must have decorated for days.  There was a bouncy house, a magician, kegs, bottles and bottles of hard alcohol, and so much food.  I saw a few of the mothers who volunteer at the school.  I felt almost nothing except dismay while I was there.  My daughter was given a role in the magic show, and I did enjoy that.  She is missing her two front teeth, and her smile is the most adorable thing!!

 

I had nothing to drink, but I felt a sort of a blunted jealousy that people were enjoying themselves and their drinks.  I spent most of the time feeling uncomfortable and out of place.  I used to be able to fit in just about anywhere.  I'm living my life for my kid, and almost solely for my kid.  As much as I love her, it feels pretty crushing to live this way.  It takes enormous effort to do everything she needs, and yet if I didn't do things for her I would do nothing.  We were invited to the party because her friend at school is the hosts' child.  At least I'm not entirely isolated even if I don't enjoy parties.

 

I tried to bake cookies with my daughter yesterday, but it was too hard for me.  I couldn't get started until it was too late.  I didn't have time to chill the dough.  Finally, we bought dough at the store, but it wasn't right.  I wanted to use cookie cutters, and the dough didn't have the right ratio of fats.  So, the cookies were shapeless.  I suppose the fact I was able to get to the store and the party are good signs. 

 

 

[Sheera]

Rosetta—tomorrow could be the day where it starts to improve just a little bit. Hang in there—this is a setback but also a sign that your brain is healing. Just take a minute at a time. I know that feeling of thinking it will never end. But it will—there are so many success stories and you will be one of them. 

 

Hugs—Sheera

[Rabe]

I care so much ... wish could wave a wand for all here .... magic would be nice.  

Sometimes the sadness is a wave of its own...take care Rosetta.  I think getting to the store and the party were huge!  I have been so isolated, but just don't want to see or talk to anyone....I think those things were monumental given what has been going on recently!!💜