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Rosetta

Rosetta: CT May 2011 and too fast taper Feb 2017

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Rosetta

I'm a wreck.  It's 5:22 am.  I woke up and couldn't go back to sleep.  I am crying real tears.  It's been a long time since I could cry tears.  Maybe this is a good thing.  I'm feeling a profound sense of loss.  I miss my child as if she's gone, but she's right here next to me.  I miss her -- the her she was at 3 and 4 -- before this illness became much worse.  They were raising the dose of Zoloft, and I know now that it was kindling me.   We had such fun together.  She doesn't remember that.  That is very painful to me.  I built playhouses out of cardboard boxes for her.  I made play dough.  I set up a train set.  I would have times when I was somewhat manic and had so much energy.  Then it became too much, and I would obsess over something.  I lost my ability to play.  I cycled through what must have been windows and waves.  How wish I had known then to stop raising the Zoloft.  I wish my doctor had known.  

 

I had a miscarriage when she was 2 1/2.  December 23rd.  I was at 12 weeks, and my morning sickness had suddenly stopped at about 6 weeks.  I worried about that, but I tried to ignore it.  I know that having a second child would have changed everything for my daughter.  I thought at the time that it would have been very good for her to have a sibling, but now I know what was happening to me, and I think she is better off.  It still makes me very sad that I lost that baby, but how would I have dealt with having a new baby and a toddler in the condition I was unwittingly facing?   Of course, I wish I had never been put in this position. I wish I had both children, and that I never experienced this syndrome.

 

In any event, my daughter and I were very close after that, and the Zoloft seems to have interfered with that closeness.  I worry how that has affected her personality.  I'm not really sure what even happened to me when she was 3 and 4, but I remember how much fun we had.  I started to have some problems with my cognition, but nothing alarming.  I was working some.  I felt in control, but I thought I was just a bad housekeeper.  I didn't understand how other mothers kept house, and I thought I was just not able to do it well with a child, too.  It didn't upset me very much.  I wasn't anxious about that!  We did a lot of crafts together when she was 4 and 5.  I was able to have her 5th birthday party, but not at my house.  That was in May.  A big party with lots of kids.  It was simple, but there were a lot of people.  So, I know I was functioning, but I wasn't normal.  

 

That Summer of 2016 I was still trying to work.  I went to the track a lot to socialize.  My daughter still remembers going with me.  It was fun.  She still wants to go back, but I gave up my passes.  (The next Summer I paid for passes, but I was too sick to go after I quit Zoloft.)  At some point, I lost my creativity.  I couldn't play with her even when I wanted to.  The ideas wouldn't come.  She was growing, too.  She wasn't simply following my lead.  She had her own ideas, and I had trouble keeping track of everything -- objects, my thoughts, where I put things.  The house became a real mess about that time.  I couldn't keep up, but I had no idea that my brain was the problem.  I was very excited about life, however.  I felt that we were on the right track. 

 

In the Fall, Kindergarten was hard at first.  We drove her 45 minutes away to an all day kindergarten because the local kinder was only a half day long.  I wasn't healthy enough to deal with half day kinder.  My daughter needed more socialization.  Our option for all day kinder wasn't better.  The extra hour and a half in the car was a problem, too.  We had to get up too early, of course, for a 5 year old.  I was having the morning cortisol issues, but I didn't know about WD or cortisol spikes.  I thought I was genuinely under attack from all sides.   I thought the world had gone mad.  It had, of course, but so had I.  November of 2016 was Earth shattering for everyone and even for the people who were happy with the election results the next year was full of uncertainty and change.  I thought what was happening to me was real.  I thought I was having a normal reaction to the circumstances.  

 

The school was ridiculous.  The people who sent their kids there were frightened and many were struggling financially.  It was a private school, but not the most expensive.  It was not affordable either.  All the parents were very stressed.  Everyone was living an Instagram life and many beyond their means.  The teachers were stressed, and the admin reacted by shutting the parents out as much as possible.  I was so surprised.  My husband confirms that my perception that intense anxiety was swirling around that school was correct.  I felt so cut off from my daughter.  The teachers wouldn't tell me how she was doing.  They had decided that parents would pressure their kids if they knew the truth about their progress.  That was probably true for many of those parents, but we were the opposite.  The school was very academic, and that was the opposite of what we wanted for kinder.  I was worried about my child's social development.  The lack of information and the outright refusal to let me know anything contributed to my anxiety greatly.  I had the sense that my daughter was being stolen from me.  It was awful.

 

By December, my husband had convinced me that the school was not the right fit, but that nothing really bad was happening to justify my level of anxiety.  I decided that Zoloft was causing my problems with anxiety.  Somehow, and I don't know where, I learned about anti-depressants causing anxiety.  I decide to "taper" off.  I used the information I found on the Mayo Clinic website, I think, to taper.  I had no idea that I was essentially cold turkeying 150 mg of Zoloft.  By mid-February, I was done.  I felt better at first.  I remember that, and I thought I had done the right thing.  Then, the same problems I had had before came back and they got worse and worse and worse.  The house got worse and worse.  My daughter was turning 6 in May.  I managed a birthday party for her -- not at the house.  (By her next birthday, I could not even think about having a party.)

 

That Summer was pretty bad.  That makes me so sad.  My daughter was 6.  She's now 8.  I feel that I've lost 2 years of her life.  I haven't.  I've been there.  I have tried to document here on this thread everything we have done together.  However, I'm in an emotional space right now in which I feel that I have missed the last 2-3 years of her life.  It's intensely painful.  I want to see my 4 year old so badly.  It feels as if she died.  That's how painful it is to me although I'm quite sure I'm not actually feeling the grief that a mother whose child died would feel.  I want to be there for my 5 year old, too, but I can't.  She's gone.  I miss her so much.  I feel that she was taken from me.  Something went wrong, very wrong, when she was 4.  There was a time when the Zoloft stopped working or the dose was raised that caused a cascade of things to happen in my brain.  I want to be there for my 6 year old.  I missed that Summer with her.  I was so very sick that Summer.  I miss my 7 year old.  I can't believe my 7 year old is gone, too.  I feel we continue to grow apart.  We very rarely have fun together.  I feel that I am always barking at her.  When I want her to go with me somewhere she doesn't want to.  Being with me isn't fun.  Maybe it isn't even pleasant.  I have no ability to be fun.

 

Maybe all mothers feel this to some extent?  They worked or they had other children or they had something to interfere in raising their children the way they would have liked?  I'm very fortunate that I have not had to work.  So fortunate.  

 

I feel that my daughter is slipping away.  I feel that my life is slipping away.  It scares me to think of life after she's grown.  I won't know what to do with myself.  

 

One part of this illness that is so challenging is trying to seize the day when I feel terrible.  I don't want to regret another year of not being with my daughter.  Of not having fun with my daughter, but if I'm in pain, and I'm irritable all day that's not how I want her to remember me.   That's not how I want her to be when she's grown up!!  It's a catch 22.  I suppose what I really want is to play with her.  I want to be a child with her, I suppose.  I know she wishes I could be.  She can't understand why I can't play.  Maybe most adults can't.  Maybe it was easy to lead her in play when she was very small and now that she has her own ideas . . . I don't know.  The misplaced toys I see distract me.  It's hard for me to focus on the toys we are using.  Very hard.  Sometimes I simply can't do it.  I'm distracted by adult life I suppose -- all the things I "should" have done like cleaning up and keeping things organized.  I'm distracted by my failings and that distraction causes me to fail again -- at being present with my daughter whom I love more than anything!

 

I am very scared that I have cancer.  I really need to go to the doctor.  I have a spot.  I have had several since I quit Zoloft.  Maybe it's psoriasis.  They come and go.  Skin tags come and go.  My skin peels for no reason.  I have lost several freckles or moles.  I have lost freckles that I had for 20 years.  They literally peeled off.  This spot is kind of hard.  It hurts if I touch it.  It sort of itches, but not really.  I can't tell if it's growing or not.  I can't see it.  I don't want to worry my husband.  I haven't told him.  I don't trust the doctors, of course, but I can't ignore this.  

 

Now its 7:26 am.  At least I can't have a cortisol spike if I'm not asleep!

 

 

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Rosetta

Thanks @Dejavu @Elyssa143 @direstraits @RichT @Carmie

 

 for your comments.  I really appreciate your support.  You are all so sweet to check in on me.  I'm sorry that I can't get to many threads right now.  I hope you are doing ok. Thank you from the bottom of my heart.

 

Rosetta

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Rosetta

Last night, thankfully, I was able to go back to sleep after the cortisol awakening around 5 or so.  The cortisol awakenings continued to happen until I was wide awake around 7 or so.  Anxiety stayed with me almost all day.  I refrained from teaching Spanish to my daughter because the anxiety was too high.  Stayed home.  I tired to put up hooks to organize some kitchen utensils, but it was so hard to do because of anxiety that it made me cry.   I drop things; I feel like I've had too much coffee, yet I have had none, except decaf.   I'm not paralyzed completely the way I used to be, but I can't do much at home.  I wanted to go out in the morning, but my husband had things to do.  So, it's 9:00 pm and I'm still buzzy.  

 

Yesterday, I took a walk on the beach.  I felt nervous the whole time.  This is a long wave.  Tired.  Want to live life, but I can't.  Want to fix my house.  Can't.  At least I feel confident that this wave will end.  No SI.  Just strong frustration.  I'm running out of time.  We leave for Spain in less than 2 months.  So frustrated.  I would like to leave the house in some sort of decent shape for the house sitter.

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Rabe

Dear Rosetta...I want you to know I read your long post earlier but could not write as my mind is so foggy today and I have been quite anxious and not feeling well....wanted you to know have been thinking about you so very very much!.

On 7/4/2019 at 9:44 AM, Rosetta said:

We had such fun together.  She doesn't remember that.  That is very painful to me.  I built playhouses out of cardboard boxes for her.  I made play dough.  I set up a train set.

This sounds so lovely Rosetta...and I believe that although it may seem she does not remember now...she will remember...I know this because of myself and my own children.  It is only later when they are older and 'wiser' that they really reflect and go back to their childhoods with fondness and gratitude.  NEVer did I think I would ever hear 'I miss you" from my oldest son!  I thought he didnt have any good memories at all...but he is always surprising me with the things he remembers ad the details!  It has calmed that part of my heart that has felt so guilty and ad for so many years.  I hope that you can know you have done and given all you have at any given moment and it WILL be remembered and it will be cherished by your daughter.  7 and 8 (give or take) there is a shift...my kids were trying to transition from little kid to a bigger kid and I remember it as a challenging but interesting times they tried to find their own identity etc.  I dont think it is that she doesnt remember those things or think they were fabulous...they juset are not where her mind is I suspect which is hard because yours is so often there which I can understand as I feel the same with my children and grandchildren and friends and life since all this started.  I feel I already have lost so many moments and so much time...it is a hard thing to accept.  But having any moments it a gift....I try to remind myself of that...sometimes I am successful and others the pain is too intense and those few moments seem like a drop in a large body of water....lost. 

 

On 7/4/2019 at 9:44 AM, Rosetta said:

 I can't believe my 7 year old is gone, too.  I feel we continue to grow apart.  We very rarely have fun together.  I feel that I am always barking at her.  When I want her to go with me somewhere she doesn't want to.  Being with me isn't fun.  Maybe it isn't even pleasant.  I have no ability to be fun.

She is not gone...just the age is gone....and she is changing and finding her own identity...breaking away.  It is a hard time but I hope you can know it is not about not wanting to be with you...it is her wanting to find her life with her friends and all.  Painful but wonderful when some years go by.  She will be back and will want your advice and your input and your ear and your support.  That is what I believe in any case from my own experience.  

As far as no ability to be fun I remember not too long ago you posted about you and your daighter having a lovely day together laughing and having such a good time doing something at the table?  I cant remember exactly.  You are fun!  But you are also the one that helps her be responsible.  Thats ok.

On 7/4/2019 at 9:44 AM, Rosetta said:

I'm distracted by my failings and that distraction causes me to fail again -- at being present with my daughter whom I love more than anything!

I know I struggle with this and others here have posted some things similar as well...it is so so hard Rosetta and I am sorry for what you are feeling as my heart that aches so often aches for you.  

On 7/4/2019 at 9:44 AM, Rosetta said:

I am very scared that I have cancer.  I really need to go to the doctor.  I have a spot

This is something that has been scaring you for some time.  I so hope you will get it checked so that you can put your fears to rest...you deserve to do that for yourself and find the peace that follows when you know all is ok.  Perhaps that would help other things as well with even one less thing to be concerned and distracted about.  I so hope this could be true for you Rosetta.  

 

I love you dearly my friend and was so grateful to come back and read that you are feeling some better.  Take care Rosetta and know that you are loved by so many here...and are loved by your daughter and husband as well.  Take care of you!!!  Love nd hugs!!💜

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Dejavu
2 hours ago, Rosetta said:
2 hours ago, Rosetta said:

At least I feel confident that this wave will end.  No SI.  Just strong frustration.

 

Well, there's that. Not to be glib, but that's very positive. Don't underestimate it.

 

But I do understand how you feel. I really felt for you when you wrote of missing your daughter. But may I offer you some perspective, mom to mom?

 

On 7/4/2019 at 9:44 AM, Rosetta said:

Maybe all mothers feel this to some extent?  They worked or they had other children or they had something to interfere in raising their children the way they would have liked?  

Oh, abso-freakin'-lutely!! Career, ex-husband, and a million other things. You are not alone. Far from it. We all have ideas about how we want to raise our families. But as John Lennon said, "Life is what happens to you while you're busy making other plans." 

 

I was not on psych drugs at all when my daughters were small (for some odd reason, I waited until I was 55 years old to make that particular mistake - smh!). But I'm a Type A, uber-organized "planner" by nature, which has it's limited uses to be sure, but one huge drawback is that I feel I've almost never been in the moment in my entire life. Too busy looking ahead, planning for contingencies, getting things done, etc. And you know what? I feel the exact same way you do. I watched my adult daughter hold her own baby last week and thought to myself: "When in the world did THIS happen?" 

"How did she grow up right under my nose?"

"Wasn't she a baby herself just a minute ago?"

The sad truth of it is while both my girls were growing up, I was there, but I wasn't there. While they were learning to walk, I was already getting ready for preschool in my head. When they were in preschool, I was thinking about middle school. High school graduation? All I could think about was them leaving home and how I would worry. You get the point, I'm sure. 

 

I regret it, deeply. I would gladly relive benzo withdrawal, AD cold turkey and reinstatement a thousand times over if I could just go back in time and fix that one thing. I've agonized over this particular glass of spilled milk in my head a million times. I've wailed about it to therapists. I've begged my children for foregiveness, but they have both told me they never felt neglected or abandoned and that they have nothing to forgive. Quite the contrary, in fact. They call me Helicopter Mom, because they say I've always hovered over them. That's when the penny dropped for me. They never knew. They never knew my thoughts were miles away. All they remember was that I showed up for them. I was there. The only one paying a price was me.

 

On 7/4/2019 at 9:44 AM, Rosetta said:

but if I'm in pain, and I'm irritable all day that's not how I want her to remember me.

Remember you? You're not going anywhere anytime soon.  And this is a temporary blip on the radar. There will be many more moments, many more memories, a lot more water under the bridge before your mother/child story is finished. And they will be epic!

 

Is there anything low key you can do together? You do Spanish lessons together - does she enjoy that? Can you maybe think of ways to make it more fun for her? Spanish music? Costumes, perhaps? Little girls love to dress up. She's 8 - can you just go ahead and tell her that Mommy isn't feeling very well right now (which she's probably already figured out), but she shouldn't worry because you will be okay soon, and for now, you and she need to do some quiet activities? You say she has her own ideas about playing - ask her to write a story and draw pictures about the games she'd like to play with you when you're better. Maybe ask her to act out a play for you. You see what I'm getting at? Activities where she gets to be active and imaginative, and you get to be passive, rest your poor body and still give her undivided attention.

On 7/4/2019 at 9:44 AM, Rosetta said:

The misplaced toys I see distract me

 

On 7/4/2019 at 9:44 AM, Rosetta said:

 I'm distracted by adult life I suppose -- all the things I "should" have done like cleaning up and keeping things organized.

What can I say, but "life's too short?" No one ever laid on their death bed and said, "Gee, I wish I'd done more housework."

 

 She doesn't know your racing fearful thoughts. She doesn't notice your trembling hand or the circles under your eyes. She can't feel your head spinning. She just knows that you're there. You're Mom. All you have to do is be Mom. And I know that in our condition, that's not always an easy thing to do. Love will take it from there.

 

Sending you healing energy tonight!

 

DJV

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Rosetta

I'm really struggling.  It's 3:17 am.  I just woke up from a cortisol spike, and I'm in tears.  I feel that I'm dying.  I have an overwhelming fear that I am slowly, imperceptibly dying.  No one can see it.  I can't point to anything that would be good evidence to show that this is true, but it's the strongest feeling.  That itching, of course, continues to bother me.  It seems to remind me that I'm dying - of cancer, I suppose.

 

The feeling that I am disconnected from everyone is very strong, too.  I have no community.  I have a few individual friends who don't know each other.  I feel lost.  It's very, very hard for me to pay attention to more than one person at a time.  So, why should it matter that my few friends aren't a community for me, but I feel exposed and in danger because of it.  People would never come together for me.  They don't know each other.  I'm realizing what a huge hole there is in my life because my friends don't know each other.  I have always expected to be able to bring them together -- that they would become friends because of my efforts, but I haven't been well enough to do that.  

 

I have wanted to be the person who had get togethers, but I can't do that.  I'm very afraid of what will happen to me and my daughter if I can't do that.  I have been alone most of my life except for my husband.  He has only two friends.  They have no spouses available to me.   One has a spouse, but she isn't well.  She can't socialize. Neither of his friends have kids.  I'm aware of the impact this will have on my daughter's life.  My life is very poor because of this.  I am so lonely and afraid.  It seems that if my husband gets along with someone that person's wife is not interested in me.  Or vice versa.  It's somewhat surprising to me that this is life.  I guess tv made me expect the opposite.  Instead, my friends are on tv.  My grandmother used to say that.  She said the people on tv were her friends.  I found it so odd, but now I get it.  After my grandfather retired and moved them 1500 miles from all her friends she was alone with me.  

 

I have moved a lot.  From high school to just 9 years ago I was constantly moving.  I stayed in one place no more than 4 years after that until now.  I know this is a big part of the problem.  Since I have been here I have been sick.  I tried very hard the first 5 years of my daughter's life.  I have made two friends since she was born.  Their politics are not mine; they are both very religious, and I find organized religion to be a racket.  What is funny is that they would probably be better friends with each other than with me if they knew one another.  Their husbands would not click well with each other though.  My husband doesn't have anything in common with their husbands.  That makes a big difference.  This is all so difficult to navigate.  I don't know how to fix it.  

 

My husband works alone.  I'm alone in my house with him.  The energy it takes just to get my child out there to meet other kids -- to school, to camp -- it's all I can manage.  That's why I need my house in order.  I need to invite people here.  It's the only solution, and yet I can't.  My brain can't do it.   I can't even cull the stuff.  I can't have the house cleaner here or I start to cry.  She only wants to come in the morning, and the anxiety is too high for me then.  I cry every time she is here.  Every time.  I know she thinks I'm insane.  I think I'm insane.

 

Its absurd that I can't invite anyone to my house for a play date.  This is a crazy way to live.  But I tried yesterday to organize kitchen utensils and that made me cry.  So, what hope is there?

 

Maybe another year of healing?  My daughter will be 9 next Summer.  That's not too late?  

 

Thank you, @Rabe You are so kind to me. I wish you were not so far away.  My daughter wants to watch tv a lot.  She rarely sees friends.  I try, but it's hard to find a time that the other parents are not busy because they work.  We only have Netflix and Amazon Prime.  No network tv.  She only watches kids shows, and I try to turn them to Spanish frequently.  She has no close friends.  I think the characters on tv are her friends.  It breaks my heart.  The kids from school -- it's hard to see them.  Their mothers work, and they are in daycare in the Summer or with their grandparents.  We manage about one play date per kid per Summer.  Really.  Maybe we see someone twice in all three months.  I try to keep her active, but there is no overlap between the kids at school and the camps.  Last Summer, I tried to keep a full week open between each week of camp so that we could see her friends.  It wasn't good.  She was alone too much.  People didn't have time for play dates when she had no camp.  So, this year we scheduled a lot of camp time.  She needs the activity and socialization.  She is lonely.  

 

I was very lonely as a kid.  There were no Summer day camps.  My grandparents had no way to find friends for me.  When I was 8, my mom took me, and I went to school with kids who didn't live near me.  My mom made no effort to let me see my friends in the Summer at all.  It was only half an hour between home and school but not once did I ever have a play date.  My daughter's school is so close we can walk there.  I expected that to make this so easy.  If I were well I would be the mom who took in everyone's kids after school.  The playdate every day in Summer mom.  Maybe I'll get well.  Right now it seems that my daughter will be 10 before that happens. 

 

Thanks for your kind words, Rabe.  She was too little.  They have no memories from 3 and 4.  I barely have any except a sense of safety and love.  I'm so worried that my anxiety when she was 5 erased out that feeling of safety, but she does want to stay home.  She feels safe here I think.  She even notices that the memories from kinder have faded!! She tells me with sadness that she doesn't remember kindergarten.  She never sees those kids.  I didn't click with the moms of any of the girls.  There were two boys whose moms were very friendly.  I have managed to see one of them twice in the last two years.  She's very friendly, but she grew up here and has family here.  She doesn't need me.

 

My husband thinks that my daughter doesn't want to go out because she's been scarred by how traumatic it was when she was 5 and 6 for us to leave home.  My intense anxiety resulted in me melting down like toddler --crying and screaming -- when we tried to leave the house.  The cortisol and Akathisia.  I was afraid to go, but I was afraid to let my husband and daughter go without me, and I was afraid to be alone.  I thought they would die if I wasn't with them.  I knew that was irrational, but it was very real to me.   I thought we would all die or be hurt, but I needed to be with them.  That occurred for one whole Summer when she was 6, and it happened last Summer at times.  Getting her to school in first grade would sometimes be that way, but not too often.  Eventually, I was able to let them go without me and if I felt that happening I stayed home.  That was how I stopped it from escalating.  I was afraid to go out, but I knew they needed to go, and I pushed myself, but we sometimes had to give up.  It was so awful.  That's what she will never forget.  

 

You have no idea how afraid I am that she will have lifelong problems.  I feel so guilty, but it was Akathisia, and I could not control it.  Now that doesn't happen.  I hope she will be ok.  She will go, and she doesn't seem to be too upset about it, but it's hard to get her to go.  She really wants to stay home unless we are going to do something she wants to do.  Maybe she's normal?  I have such a hard time going myself that resistance from her can defeat me.  It's too much to have to drag her out when I can barely get myself together to go.  

 

Thank you, Dejavu.  I needed to see these messages.  I'm in a bad place.  It's now 5:12 am.  This wave is getting stronger.  I have never had my period this month, and it's probably time for another one in about a week.  I'm so weary.  Thank you for chiming in.  I know parenting is hard for everyone.  The neuro emotions make it so intensely painful.  I'm very, very lucky that my circumstances are what they are.  So is my daughter.  This could be much worse.  @Dejavu 

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Rosetta

Note: Dystonia off and on.  I woke up st 3:00 am with it.  Last night, too. And I had it in the day on Thurs.

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wantrelief

Dearest Rosetta - I am so sorry you are going through such an awful time.  It is good that you know you are going to get through this wave.  My hope is that once this wave passes you will experience greater healing.  You are such an inspiration to me and so many others here.  💗WR

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Rabe

Hi Rosetta...I remember things from age 4...so do my kids...not a lot.  I do think kids are mostly in the now and then there is another now the next day.  Its forever changing....similar to what we are expereiencing...things are ever changing.  

I took my youngest son to a therapist when he was 8 because I thought he isolated in front of the TV ate a lot things after his dad left....didnt care about much really except eating junk.  He tells me he was waiting for his dad to call but he never did.  One doctor wanted him on an antidepressant. UGH!  I did not.  He is so lovely, so kind, so thoughtful, so intuitive....he really feels the world and those in it.  Of my three he is the softest, most honest, etc. and I think it is because he has always been a 'feeler'.  And from all he felt when he was young, much of it not what he would have chosen, he blossomed.  

Know that I am thinking about you and loving you dearly!!! 💜

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Rabe

As I reread your posts....what pops out are seeming connections made between how your daughter feels, might feel, might be or become...and the feelings you had or have.  Do you feel that is happening?  Some projection and fears in that way?  
Im so thinking about you and hoping this wave and all the neuro emotions and thoughts subside soon!  Love you Rosetta!!💜

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manymoretodays
Posted (edited)

Oh Rosetta,

It get's better.  I mean it does.  And I hope that period of yours comes soon, if that phase of your cycle often brings relief.

 

What your dear daughter may remember, in the long run, is the strength she witnessed in her Mom, and the amazing power of healing.  How her Mom tried so hard to give her all to her!

 

What have you got going for self soothing techniques?

I've got this new thing where I cross my arms, hands over my elbows, and then just pat, one side, then the other, and sometimes hug meself just a bit.  Taking care of baby mmt.  Perhaps you can take care of baby Rosetta that way too!

Self care doesn't have to be big lapses away from it all, I've found.  Simple things often work.

 

Do you get a chance to write, or journal?  Do you play an instrument, or enjoy listening, oh even to some of that little kids music........and do a bit of a dance routine.  Do you and hubs try for some of those date nights, once in awhile, just to have fun and enjoy each others company, outside of all the pesky responsibilities otherwise.

 

Collect some acorns for me....lol.......or perhaps we could create the acorn tapering chart for others.......  Solly, I be a nut sometimes!  B)💃❤️

 

My gosh Rosetta, you've got a big trip coming up, and all kinds of things.  Summer goes fast.  School stuff again.  And all these arrangements for your little girl.

 

The house, and having people in........I say, give it a try.  Perhaps one of your new people will help you with the de-clutter and all that you see that is just not right, right now.

Don't compare.  Well do compare, but only on the level where you begin to find that all that you've got.......is truly a lot, and that you begin to feel that in your heart and soul.

 

And oh, I am so sorry to hear that the dystonia still occurs, in the midst of these times for you.  Have you been able to slowly get your dear daughter to sleep on her own now, or in her own bed and room?  Is she 7 now or 8?  I bet she is just the most dear, precious child.  So much love you have for her.  I mean past tripping is not all that healthy, if it just leads to continuous obsessive thoughts.

 

Waving my wand, oh, if only I had one......lol.  Anyway, sending all the best.  Thoughts, wishes, intentions.

 

Love, peace, healing, and growth,

mmt

p.s.  I love your journaling here too Rosetta.  I had to go through bunches of memories and all myself.  I kept wondering if it was due to the Trileptal/oxcarbazepine.  I think it's part of it, though, the protracted discontinuation syndrome, or it may be.  I thought it was cool that I could remember so darn much about everything.  And it really helped me too, to identify where I still had baggage, or work to do.  Some, most.......I could do on my own, or with peers.  And I have the worlds most wonderful therapist too!  That helps me.  And oh.....(((((((Rosetta))))))

 

I'm a link fiend too.  So here is one.  Shame, guilt, regret, and self- criticism

There looks to be more too.  I just did the survivingantidepressants.org shame, guilt  type of search in my main browser.

I also found myself browsing through Best of SA- Favourite advice and insights  too,  last night,  after Alto added a new one there.  Maybe something good there will help comfort you now too!

 

 

Edited by manymoretodays
p.s. and links, yes, links! :-)

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Rosetta
20 hours ago, Rabe said:

As I reread your posts....what pops out are seeming connections made between how your daughter feels, might feel, might be or become...and the feelings you had or have.  Do you feel that is happening?  Some projection and fears in that way?  
Im so thinking about you and hoping this wave and all the neuro emotions and thoughts subside soon!  Love you Rosetta!!💜

 

Yes.  It's been a really hard life, Rabe, at the emotional level.  If I could sleep through the night I might not think about it so much.  I had a cortisol awakening very early, and I never went back to sleep.  

 

Sigh.  This has to end soon.  I'm so exhausted.

 

Yesterday was hard.  The remarkable thing is that I didn't feel too bad at all other than lethargy and tiredness, but my daughter was in a terrible mood.  She's been very moody for about 2 weeks now.  Yesterday was much worse.   She didn't want to eat.  One of her friends who is 8 has started puberty.  She was moody the other day.  Of course, Im worried that will happen to my daughter!  It happens more often than it should.

 

I have been up since 4:00.  Maybe I'm processing all of this because my brain is healing.  Perhaps it's natural to fear that one's child will have the same problems and challenges she had had.   There's no reason for that to be the case.  We are very stable parents comparatively.  I'm re-living what happened to me as a child during these fearful cortisol spikes.  I wrote it all out this morning and then erased it.  It was really awful.  Maybe I need to process it, but I don't really believe that.  I think it's going to keep coming back until my nervous system heals.

 

What happens is that I wake up, and I am calm.  It's rarely like before when I felt an adrenaline jolt to my heart right before I woke up.  Sometimes it is.  But if not, the cortisol starts releasing into my body after I wake, and I become more and more anxious and fearful.  I'm still tired and sleepy.  My eyes are very sensitive to light.  I hope to calm myself and go back to sleep.  This time, I tried breathing awareness.  That didn't work.  I heated the shoulder wrap, and turned on the soothing music.  No dice.  It's hormones.  I can do the same thing a different night and it "Works".  I'm not sure that I am dealing with the same bodily process during the nights when it works and when it doesn't.  I think something is different inside my brain on the nights I am up at 3:30 or 4 until daylight.  

 

Last night, I was up for about 2 1/2 hours and then I went back to sleep after daylight.  That's very unusual.  I don't feel that is possible this morning because it's already 7:40.

 

My grandmother was always my mother, but she didn't protect me from my biological mother.  She didn't choose.  I realize that is the root of everything for me.  I never had anyone who protected me as a mother would.  My grandmother protected me from everyone except the worst person in the whole damn world.  That person destroyed me.  She systematically destroyed me, and my grandparents didn't even notice or take action!  I feel abandoned.  There is no safe place for me.  I live through that over and over again every night when I wake with a spike.  I'm still that child who is being abused.  Maybe it's the time travel aspect of WD.  My brain is changing and activating memories that are playing in my head, but I am experiencing the emotions as if they are happening in real time.  I'm sure I am Projecting.

 

I have to go and take care some things with regard to my grandfather's estate, and I have to see my mother next month.  I have to give her what he left for her.  That is dredging up emotions, I'm sure.  

 

No, MMT, my daughter does not sleep alone.   I had a very traumatic experience surrounding that issue when I was 4.  I'm hoping we will figure that out naturally at some point.  She sleeps very well now, and I'm less sensitive than I used to be -- less aka, I think.  I don't think she is waking me up very often.  When I wake with cortisol she is dead asleep.  It's a good point, but I can not make changes right now.  I'm just getting by as it is.

 

This is hard.

 

 

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manymoretodays

I know Rosetta.  It IS real hard sometimes.  I guess I just wondered if perhaps it was a contributing factor to the night problems.  Yes, you will......figure it out.  And that sounds good, the "natural solutions".  My niece slept in with both her Mom and Dad for quite some time.  Really impressed with my sister out laws parenting.  This niece is now young adult and doing quite well.

 

Dr. today for me, which for some reason, I am now dreading.  That's not rocket science, trying to figure that one out for me!!  Just my GP.

And man, my Mum......I can get pretty lost in worries around that sometimes.  And rocketed back in time.

 

Keep on getting by Rosetta.  Wish I had more to offer for your relief.  Sending some moments of calm and peace throughout this day for all of us.

 

L, P, H, and G,

mmt

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neroli

Hi Rosetta

 

I'm so sorry to read that you are having such a hard time at the moment.  It is hard and it is exhausting.  You have quite a lot on your plate at the moment, with the Spanish trip coming up soon.  

 

I hope you will be able to cut yourself some slack and take time to care for you as much as you can - including not giving yourself a hard time, you have always done the absolute best you can.  We live in the world of "perfectionism" being projected at us and needing to think we are living life the perfect way.  Real life is messy, for everyone.  There is no perfect.

 

much love and thank you for your messages of support on my thread

 

Neroli 💜

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neroli

Hello Rosetta

 

Thank you for your encouragement on my thread.  

 

I'm so sorry you are having such a wave. It really isn't fair.

 

As you say, we will get there - it's a matter of time.

 

As I said on my thread, I'd like to taper the Esci. - just because Citalopram gave me milder leg weakness years ago when I was on it, so I'm making an assumption that the Esci.could be adding to the already compromised legs. You have quite rightly noted, though, that getting off the drugs is so difficult for us and Esci. seems to have produced the most significant problems when I've tried to taper it previously.  There has to be a way.

 

I hope you get "there" as soon as possible.

 

Neroli 💜

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Rabe

Hi Rosetta.  I think everything comes into play in this process.  of course you are dealing with your daughter through your own lens and past...how could you not?  For what ir is worth I did not leave someone who abused my children immediately and I have much shame and guilt bout that...but I did when i could.  I just froze all the time because of my own past.  I believe your grandmother loved you...and loved her own daughter and was not able to see the truth because of those loves and did her best.  It doesnt make it right and I am so sorry you had to go through it.  I do think it is good it comes up for you too se an process as you are.  Being victims of victims, grandiose doctors, and drugs that ought to be handled way differently is overwhelming...one would be so...

I am thinking about you and loving you.  The fact that you are aware of so much has and does make you an even better mom...I truly believe that.  She is so lucky to have you !!!!!💜

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wantrelief

Hi Rosetta - I read elsewhere that you were in a bad wave.  I am so very sorry and wanted you to know that I am thinking about you.  You are going to be ok.  💗WR

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FarmGirlWorks
Posted (edited)
On 7/8/2019 at 7:43 AM, Rosetta said:

She systematically destroyed me, and my grandparents didn't even notice or take action!  I feel abandoned.

 

A friend, who also had a Mean Mother, said something to me a few days ago that I am really chewing on. "It wasn't the things that were done to us, it is the things that weren't done." I think neglect --- physical and emotional -- falls into this category for me. The instances I replay in my head are not the physical  or emotional abuse (almost laughable at how sad they were) but not protecting me when it mattered most -- I still have not forgiven that.

 

That being said, when your brain/nervous system doesn't have those receptors to catch the happy chemicals and soothe you, of course! we remember the horrible stuff. I am def more fragile and apt to go to dark places in a wave. My latest analogy for "normies" who can't understand why I "still" have symptoms is that it is like a game of baseball. The batter hits out a ball (soothing chemicals) and a player in the outfield (receptor) catches it. If there are no receptors out there, then it doesn't matter how many balls/chemicals go out there, they are not caught until (after at least a few innings) the receptors gradually come back out. Not sure if that is right but at least it seems to "catch" with some folks.

 

Hang in there! You are not alone!

Edited by FarmGirlWorks

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Rosetta

I used to describe my life as trying to traverse land in the locks of a canal without a boat.  I would find myself at the bottom of a lock, exhausted and just starting to catch my breath when water would flow over the wall toward which I was moving.  I needed to climb that wall, but the water would rush in thereby washing me back to the opposite side.  Then, when the water was calm, I would swim the length of the lock just in time to nearly reach the desired wall when the lock would begin to empty.  The pull of the water flowing out would drag me away from the wall, and I would lose height as I treaded water until the lock was nearly empty again.  Having waded once again across the floor of the lock I would nearly reach the desired wall only to see the water pouring in destined to wash me back another time.  I had to keep wading, swimming and treading to avoid drowning, but the wall of the lock I hoped to climb was always out of reach.  I could float for a while when the water was high enough in order to get some rest at the expense of losing any ground I may have made whilst swimming, but I was never able to actually put hands on that wall over which I must climb in order to make progress across the isthmus.

 

Today is Saturday.  The SI was very, very, very bad on Thursday.  As bad as ever.  I felt this fight had been not worth it.  I felt there was no escape.  Either way, whether I lived or not, I felt I had damaged my loved ones beyond repair.  While I know this is not entirely my fault, fault doesn't matter.  Simply going through this experience is harming them.  I love them so much, my daughter and my husband, but I am the source of their pain and the cause of their damage.  I can't remove myself or I will cause a different sort of harm.  I can't stay without causing further harm of the same sort as I have been causing for 3 years now or more.  I am trapped.  They are trapped.  My husband insists everyone is better off with me here.  I don't know.  I want to stop hurting them.  I hate myself.

 

I am down at the very bottom again emotionally.  Thursday was so awful.  I panicked because of something my husband did.  He thought he was helping me, but he turned on the vacuum cleaner.  Why does this keep happening?!! It seems to me that the vacuum cleaner has been involved in more than two of my meltdowns.  We have talked about this over and over and over.  Either he's upset that I won't let him vacuum or the cleaner uses a vaccum or he uses one.  It sends me into a panic like nothing else.  Yet sometimes it doesn't, and my husband can't grasp that there are no guarantees from one day to the next.  I tried to warn him Thursday morning.  Wednesday was really hard, but I got through it.  Thursday morning I told him I was feeling very bad.  Later when we were talking about what happened he said that I say that everyday.  It means nothing.

 

He knows this process isn't linear, but he gets his hopes up.  He gets anxious.  He can't remember that sometimes for me hearing and feeling the vacuum is like being electrocuted.  The night before I had organized all the Legos.  I had one of those rare windows when for a few hours I was clear and free of anxiety.  I organized everything, and he noticed and was so surprised.

 

In morning, I was back to severe anxiety after a hard night of repeated cortisol spikes.  I was one misstep from having aka raging again, but he could not see that.  I was trying to eat breakfast.  

 

My husband is so tired of the carpet being dirty, but we have only one room downstairs with carpet.  His favorite room.  My daughter keeps her Legos in there.  

 

I had the one person who I can stand to have visit coming with her three kids.  I was horribly anxious that morning, but I didn't want to cancel because my daughter needed a play date.  I won't see this friend for the next three weeks.  She's one of the few friends I have.  I mentioned during breakfast that I hadn't vacuumed as I had hoped to do, and I didn't really care.  He didn't hear the last part.  He believed I was upset and anxious about it, and that made him anxious.  He thought I was in proper shape to handle the vacuum running or I was so anxious that I hadn't done it that he should do it.  I was in low grade aka instead, and disaster ensued.  

 

I never, ever had a problem with the vacuum before I was switched from Celexa to Zoloft.  I never felt so afraid of losing things before that.  I felt a strong need for organization, and I wanted to avoid spending money and energy to replace things, but there was no panic about the vacuum or losing things.  Simply concern.  I felt in control back then.  

 

I had an enormous panic attack.  I yelled at him.  The SI was very, very bad yesterday after my panic.  I really questioned whether it is better for my daughter for me to be here.  I believe it is better, but I wasn't sure because the overall impact of my condition is having a very negative effect on my husband.  He's getting angrier and angrier.  He is so stressed.  I think the toll on our relationship is reaching a critical point.  He can't hide his anger at me.  Not even in front of my child.  Despite the fact that I'm getting better overall that is not enough for him.  When I fall back he takes it very hard.  This wave continued to get worse.  Wednesday was hard for me, but I got through it.

 

As I said, I panicked and yelled at my husband in front of my daughter when he turned on the vacuum.  In response, my husband expressed horrible contempt and fury at me -- in front of my daughter.  Then he walked out of the room and left me sobbing.  He has responded this way several times in the past two and a half years.  Every time it happens I feel an intense need to die.  Later I obsess and worry in a loop about how my behavior and his words to me affect my daughter, and how she will be when she grows up.  I was in the most intense SI I ever felt,   I become convinced that we are destroying any chance she will have a healthy relationship in the future.  I'm sickened at this, of course.  

 

When I woke up on Thursday I was in bad shape.  My husband made breakfast for me, and he was being so kind.  He was happy to try to ease my worries by caring for me.  During breakfast, I mentioned that I had not vacuumed the floor, but "that was ok."  He missed the last part.  He thought I was very worried about the carpet.  I was thinking how lucky it was that I didn't care that I was never able to be calm enough for the vacuuming to happen!!!  The next thing I knew he turned the vacuum on!!  I completely lost my mind.  It was as if a switch was flipped.  I went from painfully containing my anxiety to screaming in 10 seconds.  His reaction was so, so awful, but I can't blame him.  He has nothing left.  This has gone on too long.

 

I need to be alone when I feel that edge of my seat kind of feeling.  It's the only solution.   That doesn't seem to be an option.  

 

After I lost my mind, but before my friend arrived, my husband and I talked about it.  He said he's tired of biting his tongue, walking on eggshells, and having our lives ruled by my anxieties and phobias.  He said my daughter expresses concern for him when I yell at him.  It's so sad.  I have always wanted nothing other than to be a good mother.  I wanted to be the mother I never had, but I feel that I'm worse.  I absolutely hate myself.  

 

I'm back to having long periods of insomnia every other night or so.  I have cortisol spikes -- at least two and sometimes three or four -- every morning.  I wake up in severe anxiety.  I'm  unable to nap most of the time and can never do so without cortisol spikes.  The night before this awful event, I was up for at least 3 hours.  I fell back asleep after light and slept until about 7:00 or so waking up with a very strong feeling of fear.  This is every morning for me except when I never fall back asleep again at all.

 

My heart is breaking into a milllion pieces.  My daughter is angry with me.  I can't feed her.  She rejects what I make for her.  I don't do it the way my husband does.  He's been cooking for the last two or three years and even on the rare ocassion that I can, it's rarely good enough for her.  Frequently, she won't do what I ask her to do.  She gets very angry with me and acts like a teenager sometimes if I ask her to do something.  I feel so worthless and irrelevant.  

 

My husband is telling me that I'm frequently accusing him of trying to hurt me.  I don't think it's frequent, but I am so surprised when he does something like turning on that vacuum.  I feel that we have been over and over that ground.  He's so angry.  He's so tired from trying to take care of me.  He's exhausted, and I feel that I can't have a bad day.  He doesn't hear what I say to him.  He hears what he thinks I'm going to say.  He's suffering from the stress and anxiety, and having anticipatory fears when I am very nervous.  He sleeps poorly, has nightmares, on and on.  He's crushed every time my condition backslides.  His whole life is ruled by my illness.

 

The vaccum is a problem for two reasons.  It takes things that are on the floor and triggers my intense fear of loss.  I want to know there is nothing there.  I have lost one of every pair of my earrings to the vaccum since my daughter was born.  She took my jewelry from the night table when I was sick a few years ago and lost it.  Over and over until they were all lost.  Either that or it fell off the table and the cleaning person vacuumed it up.  I was too sick to secure my earrings before she came.  I was too sick to search through the vacuum bags, too.   I tried to save all the vacuum bags which made my husband upset.  He put them in the garage.  Then a rat got into the garage and into the bags and tore them apart scattering the contents all over the garage floor.  I can't stop the loss.  

 

Wednesday, before I melted down, I was struggling to handle the morning with extreme anxiety.  I wasn't sure if it was akathisia at that point.  I thought I was coping well, and I said that I didn't get the vacuuming done, but that was ok.  I really didn't care.  He thought I was very upset that it wasn't done, and so he went to do it.  I completely lost my ability to cope when he turned it on.  I didn't see him get it out.  I didn't know he was going to use it.  I was eating breakfast when I suddenly heard it and felt it. This has happened before -- I panicked.  My muscles stiffened painfully.  I felt that he was killing me, and yelled at him.  I could not believe we were not past this -- that he didn't know the vaccum was going to harm me.

 

My daughter is right there through all of this.  That's what I can't stand -- that we both lose our cool in front of my daughter.  Then he walked out of the room and left me sobbing.  There was once that he told the cleaning person to vacuum, and I panicked.    He says I accuse him of trying to hurt me in front of my child and that is too much for him.  Maybe I do.  I'm in a panic, in physical pain and severe emotional pain.  It's intensely painful if I have aka and something is presented to me that causes me anxiety in any case.  It's completely insane, but I can't seem to control it.  If everything is quiet and no one asks me about anything that scares me I am just barely enduring that severe anxiety.  

 

In the past, this sort of thing happened when I was shocked that he was pressuring me regarding clearing clutter or throwing things away.  I felt he was harming me.  My brain couldn't deal with thinking about that and avoiding the anxiety was paramount, but there was no way to stop the spiral.  Nowadays, most of the time, I have control over my reaction if the vacuum cleaner is not involved.  I can moderate my response, usually, if he wants to do anything besides vacuum.  He can vaccum his office upstairs, and I can handle that most of the time.  He always asks me if its ok.  This time he forgot to ask, and he was vacuuming where the Legos are.  I know I'm crazy.  I know this is completely insane.  I know losing Legos is inconsequential to most people and if I could know exactly what was being lost it would be less upsetting.  It's losing something I can't identify that is intolerable.  I can't replace it if I don't know what it is!!!

 

Perhaps this a problem created by the time my stepfather threw away everything in my room because I could not sort through it and organize it.  I was 10.  I don't know what I lost except for one thing.  I don't know what memories I lost in those things.  There was a special comic book given to me by a teacher who babysat me.  My stepfather was jealous of him.  I wasn't allowed to see him again after my mother married this guy.  Otherwise, I don't know what I lost but I lost everything I had that day because I couldn't organize it.  I think that's why I'm such a mess with this issue now.  That stepfather was an alcoholic.  After my mother married I saw my grandparents a few times, but before long I wasn't allowed to see my grandparents until they divorced.  That was a whole year.  Then, when they divorced I lost my best friend, because that couple who were her parents would not see us any longer.

 

My husband has always been very shocked that I'm so severely and suddenly affected by his attempts to clean up and throw things away.  He has learned to talk to me about it first.  This time he forgot.  He thought I needed the room vacuumed -- that I was upset I had been not able to do it.  That wasn't true.  I was actually just fine with this particular friend being here.  She's the only person who comes here.  I had hoped to vacuum, but I didn't care that morning.  I had no idea that mentioning that would send us down that path.  

 

Every time I panic and yell at him, my husband gets very angry, and I feel an intense need to die.  He speaks to me in a very hurtful tone.  We were together for 5 years before I took Celexa and 3 of those we lived together.  We never had angry words prior to me taking Celexa.  Never once.  I remember the first time very clearly.

 

I worry how our words to each other affect my daughter, and how she will be when she grows up.  He worries about how the fact that I yell at him over something that is so normal and necessary such as vacuuming will affect her.  I think we are destroying any chance she will have a healthy life and relationship.  She's afraid she will make me angry.  She feels bad for my husband and tells him so.  I am the bad one here.  I am the monster.  I am adrift.  I'm just hoping nothing happens to trip the switch. I never know when something will suddenly happen that makes me feel angry and scared.  But whether I control my actions or not my daughter knows when I am upset.  Usually it's just irritation and anxiety.  I think it's when I am having akathisia that it erupts into a panic attack because of something suddenly irritating my CNS.  

 

Friday, yesterday, I had the awful cortisol spikes over and over in the early morning.  I used my shoulder wrap and music and my eye pillow to get back to sleep.  I still woke up in a panic around 7.  I stayed home all day.  I just sat waiting for the anxiety to go.  I watched tv.  I was able to play with my daughter and husband outside for a little while in the evening.  

 

Today is Saturday.  It's the same as yesterday.  Awful spikes early this morning.  They make me shakey and naseous.  I feel poisoned.  I heated my shoulder wrap twice.  Eventually I fell asleep and then awoke with a cortisol spike at about 7, nauseous, shakey, afraid, defeated.  This is the same as it was in the Fall of 2017 except that I never went back to sleep those mornings.  This is the same as it was before I quit taking magnesium.  It has to stop soon.  This is what kills people.  This is what has killed so many people.  I'm not having all day aka as I did in the Fall and Spring of 2017-2018.  I do get a break in the evening.  

 

I spent a while in a hot bath.  It didn't help much.  I don't have any Epsom salts.  The gardener has been weed-whacking.  That's making me feel worse.  My daughter is bored and keeps asking me to play with her.  I'm going to try.  She can't let me finish this.  I've been trying to finish this for three days.  I couldn't keep it straight.  I just keep writing the same thing over and over.  When will this wave end??!!

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RusTW

Rosetta ∆hang in there .You will get a window soon.

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neroli

Hello Rosetta

 

I'm sad to hear you've been having such a rough time lately.  I hope you get a break from this soon.  You are doing your best to hang in as well as you can.

 

Sending love and hugs over the pacific

 

Neroli 💜

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Carmie

Hi Rosetta, 

 

I’m so sad to hear how much you’re struggling. I wish I could take away your pain. You have had some better times in the past. Wishing you get some better days again soon💚

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Hibari

Dear Rosetta,

 

I am very sorry to hear about the issues you are experiencing right now.   I don't have children so I can't speak to that but I understand the SI and the coritsol spikes very well. 

 

You may have tried this already but I have recently been doing adrenal cocktails every day,  once or twice a day.   They haven't stopped the morning anxiety but they seem to have stopped or slowed the waves of adrenaline  I was experiencing every morning.   I still have very low cortisol in the morning and a sensitized nervous system from all my past medications and current benzo taper.   Because of that, like many here, my anxiety is high in the morning and I have nausea and sweating.  But there is a change from the rolling waves of adrenaline that scared me so much.

 

Medication withdrawal affects so many of our systems and our adrenals really take a hit.   I have avoided adrenal supplements and chose the adrenal cocktail because it's food.  

 

I pass this on as small suggestion and please know that many people here on this site believe in you and your healing. 

 

Hibari

 

 

 

 

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Rabe

Dearest Rosetta...I read your post Monday...am having lots of trouble cognitively and thought I would respond later but the issues continue.  Know that I love you and am thinking about you SO SO very much!  Am so hoping you have been able to get out with your daughter a bit and that you have had some good moments since Friday?  

Im glad you saw your friend.  So sorry about the vacuum and all....this process is so  so hard on relationships I think.  

On 7/13/2019 at 2:31 PM, Rosetta said:

Perhaps this a problem created by the time my stepfather threw away everything in my room because I could not sort through it and organize it.

I agree Rosetta that there is much swirling around this and your grandparents and mother and stepfather.   Our bodies remember even when we do not and take the reins...at least for me.  It just happens.

Hope you ar taking care of you!  Love and hugs.  Wish I could do more for you my dear friend!💜 

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Rosetta

Thanks everyone for writing here.  You really do make this somewhat more bearable when you offer support.  

 

I don't know . . . If my husband didn't believe in a better future I'm not sure what I could.

 

Sunday was horrible.  I won't bother with details, but I woke up with very intense Akathisia.  My daughter woke me at 6:30, and then continued to wake me another 4-5 times.  That is always a disaster for everyone.  I must do something differently the next time that happens in the middle of a wave.  I try to stay in bed so that nothing bad will happen, but it's useless.  I always assume that getting up will be worse.  Clearly not.  I have to try something different.  What I really is need is for my husband to get up and keep my daughter occupied to avoid the over-stimulation of my system.  

 

I tried to go on with my day, but the agitation was so severe.  We were supposed to take a friend of my daughter's to the beach.  I tried to get ready to go.  My daughter brought it to my attention that her Legos were a mess -- the same Legos I had organized on Thursday and she was missing some pieces.  

 

I ended up crying uncontrollably for at least 45 minutes, -- it was a "minor matter" that was the final straw -- but it broke the camel's back, and I ended up wailing for a long time.  All those Legos I had sorted and organized were strewn across the room by the children who were here on Thursday.  I realized it on Sunday after I awoke with aka and then was awakened over and over.  I had been ignoring the possibility that the boys had completely ruined all that work.  I had never intended the boys to play in the house -- only the older girl, but they made short work of it very quickly before their mother could get them out.  I was too ill that morning to do anything about it, and I had to hope for the best.  

 

It's not about the Legos, of course.  It's about my brain being hijacked, about the minimal hours I have control of my own brain and body, and the wasted efforts -- the wasted and lost time to be a normal mother in control of her own emotions.  I felt so good about that small corner of my world feeling safe -- a part that made sense to me.  One room in my house that was under control.  All that was supposed to happen was that my daughter was to show her creations to the girl, and we were planning to let them play outside.  My husband was right -- I should have canceled.  However, I'm afraid that some other issue would have been the last straw on Sunday.

 

I tried hot water -- I jumped in a hot shower, but I cried the whole time and was still crying when I got out.  Nothing could calm me.  My muscles were contracting strongly and the emotional pain in my head felt physical.  Maybe an ice bath was the better option?  I don't know.

 

At least I didn't yell at anyone directly.  My husband didn't get angry, just sad and upset.  He sat with me, helplessly.  

 

On a physical level I would have wished for my head to just go ahead and explode.  There was so much pressure in my body and particularly in my head, jaw, neck and forearms.  I felt as if breaking those parts open would relieve the pressure, but of course, I knew that was impossible.  I knew that would only increase the painful sensations.  As if it were even possible for my head to explode, I also feared that it would - a very mild fear -- I was completely sane in the midst of physical insanity.  I wonder if that makes any sense to anyone?  It feels as if I know reality, in my mind I'm aware of what the true reality is -- this is sort of a seizure -- and nothing can stop it (but death which I reject) and at the same time my physical body is unable to experience reality.  My body is telling me the pressure must be relieved regardless of the cost.  My mind is telling me the cost is too great, and there is no practical solution but to wait out this torment.  I suppose this was a non-SI Akathisia experience.  There was certainly an intense desire for a physical release from the sensations, but I didn't feel the way I felt on Thursday -- an intense need to die.  Quite frankly, I attribute that fact to my husband being calm - not angry -- and instead sitting nearby trying to be there for me.  Fortunately, for both of us, it just so happened that he had nothing to do with the occurrence that was finally too much for me.  I didn't have to ask him to stop doing anything.  So, he didn't feel attacked.  He was just a bystander.  So, he stayed with me and didn't express any anger or disappointment.  He didn't do or say anything that made me feel worse.  He didn't walk out.

 

Obviously, I'm trying to sort out what precedes the escalation of my painful, vibrating sensations and avoid them, but that's probably futile.  At least I don't yell at my daughter even when her actions are the reason my system is over activated.  She can't help being a child.  It's so much easier with her.  I wish I could feel that way about my husband such that there is no knee jerk reaction to his mistakes.  

 

Each time I experience the aka sensations I come to understand them more -- understand that I am truly mad when I am in that state.  The juxtaposition of being clear of Akathisia and having Akathisia is sharper now.  I think I used to be in a state of Akathisia nearly all the time in October, November and December of 2017.  Now that it's less frequent, and I have longer periods without aka, I think there is some clarity in my mind regarding how very bizarre and unnatural aka must be.  My husband says that I am an entirely different person when at have it, and he knows that I am not the real me.  He says that's why he still loves me and won't give up on me.  As sweet as that is, it's a very spooky feeling to realize that I can become "someone else" but remember everything and never feel that I am actually "someone else.""  I'm still me the entire time.  And I feel enormous guilt about everything.  There no difference between the me that has aka and the me that doesn't.  If it looks that way on the outside, that's very disconcerting to me.  I'm still holding myself responsible and thus the despair and depression after each time I lose my temper or I cry and wail even if I don't lose my temper.  

 

I guees I still can't believe this is happening to me.

 

The last three nights  -- Sunday, Monday, and Tuesday have been bad -- severe cortisol spikes, waking with fear, panic, feeling overheated, unable to go back to sleep.  I'm right back where I was many weeks ago before I decided that magnesium was contributing to this phenomenon.  Perhaps not.  Could it have been coincidence that quitting magnesium before bed seemed to stop the spikes?  Last night I had a spike at 11:00 pm!!!  Another at about 4:30, and two more before waking up for good at about 7:00 am.  Nights are simply torture for me.  I felt a bit of SI last night.  I heated my shoulder wrap, but I could play music.  My player is not working.  

 

Today, I saw a GP about my cancer worry.  She thinks it's not cancer, but she wanted me to use a steroid cream.  I can't do that.  I'm suffering enough as it is. I told her that I'm very sensitive to all medications and steroid cream makes me very anxious.  She referred me to a surgeon who may be able to see the problem better and make sure it does not need a biopsy.

 

I'm not looking forward to going to sleep tonight.  I'm afraid for so many minutes or hours every night.  I'm sick to my stomach with nausea after each spike.  I wake up feeling so terrible every morning.  I dread going to sleep, and I dread waking up in the morning and having to go forward with my day feeling horrible anxiety.  Later in the day I feel better and in the evenings I feel almost normal but very tired.  By the time the anxiety wears off I'm spent, and I can't do much of anything to improve the situation for myself as far as keeping the clothes clean and myself fed, and my daughter fed.  

 

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neroli

This is so horrible for you, Rosetta.  Very painful.  

 

(((())) and love to you - just wish we could wave that magic wand......

 

My goodness, you have immense strength and patience with this process

 

Neroli 💜

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Vonnegutjunky

Rosetta I guess I hadn’t realized you had younger children. 

 

I could not imagine going through this when mine were younger. 

 

I am sending condolences for everything your enduring right now. 

 

I have a lot of the same symptoms as you, and I also go into this other world sort of when my akathisia comes. I also think it’s seizure related somehow. 

Its a bizarre bizarre thing to try to explain, just the feelings and sensations are just wrong and weird. 

 

But ive been trying to stay calm through them. 

 

Thinking of you and wishing for good things for you. 

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RusTW

Hi Rosetta hang in there. I go through the same thing with the sleep.I don't look at my bedroom the same each time I go to bed sometimes it's a safe place and sometimes it's a scary place. We have to remain strong when we are in the scary place.

When I have my akathisia I don't feel like myself either I feel absolutely nuts. I pretty much have to isolate myself so nobody can piss me off.

 

I'm praying for you all your medical stuff will come back good.

And I'm wishing for you a good sleep tonight

Russ

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wantrelief

I am so sorry you are going through this misery, Rosetta.  I am thinking about you and am really hoping this wave lets up soon.  💗WR.

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Rosetta

Thank you, everyone.  I'm holding on.  My sleep has improved the last two nights.  I'm still having very uncomfortable spikes, but fewer and of less intensity.  I have been walking most days this week.

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wantrelief

Good to hear things are improving, Rosetta.

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Gridley

So sorry you're going through this.  You are a shining light on this site and well-beloved.

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Rabe
10 hours ago, Rosetta said:

Thank you, everyone.  I'm holding on.  My sleep has improved the last two nights.  I'm still having very uncomfortable spikes, but fewer and of less intensity.  I have been walking most days this week.

I was just checking in Rosetta....SO SO happy to read this!!!  🎉💥:)💜

Could not be more grateful for you my dear friend!!

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Rosetta

 Thanks @Rabe @Gridley @wantrelief  It's so kind of you and everyone else who has commented these past weeks to lend support.  

 

Today I stayed home.  I'm very emotional.  I have been for about 3 days.  I have been feeling angry.  I'm frustrated.  I cried today. This is very difficult.  It's just absurd.  I can't live a normal life and neither can my family.   I have to hope for a good day tomorrow.  Summer is flying by.

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Rosetta

It's Tuesday.  I'm having cortisol spikes all night.  At least 3 per night.  They start before 1:00 am.  Last night I had my second at 1:00, my third at about 5:15 and the fourth at about 7:00 am.  Usually they make me feel very hot.  Hot flashes, I guess.  Then I feel naseous a bit later.  Not every time.  I wonder if some are adrenaline spike without cortisol and others are cortisol.  I don't know why some make me naseous and others don't.  Some make me worry more, some less.  Sometimes going back to sleep isn't as hard as other times. 

 

Yesterday there was was no spike at wake up time, just anxiety.  Today, it's 7:30 and I'm naseous, jittery, and feeling an Akathisia feeling.  I have not been taking magnesium at all.

 

 This was the second month with no period.  It was due around the 15th.  Maybe these are hormone related spikes.  Something to do with menopause?

 

I have made no progress on the house/clutter issue, but I'm walking as often as I can.  My daughter is in camp at the beach this week.  When I get home from my walk I usually sit on the couch.  The lack of sleep and all the overactive adrenaline experiences make me so lethargic.

 

One good thing is that I did take my daughter and her friend to the beach on Sunday.  It was a nice.  I didn't swim, but I enjoyed the sun.

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Rosetta

Saw the specialist/surgeon today.  It's not cancer.  No need for biopsy.  She recognized the strange issue and said its not a problem.  Just another weird skin issue, I suppose.  

 

I hope I can sleep well tonight.

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