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

[manymoretodays]

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!  💃❤️

 

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 July 7, 2019 by manymoretodays
p.s. and links, yes, links! :-)

[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.

 

 

[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

[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 💜

[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 💜

[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 !!!!!💜

[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

[FarmGirlWorks]

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 July 12, 2019 by FarmGirlWorks

[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??!!

[RusTW]

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

[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 💜

[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💚

[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

 

 

 

 

[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!💜 

[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.  

 

[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 💜

[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. 

[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

[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.

[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.

[wantrelief]

Good to hear things are improving, Rosetta.

[Gridley]

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

[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!!

[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.

[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.

[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.

[Dejavu]

Yay!! One less thing to stress over! Sleep well. I hope you awaken to a beautiful window.

[wantrelief]

Oh that is great news, Rosetta....what a relief!

[Rosetta]

Up at 1:00 am with a spike.  It's dark in the room.  There should be no way that cortisol is involved in any natural way.  I can't identify anything that woke me up other than my own body/brain.  My cholesterol is high for the first time in my life.  Just over 200.  I'm developing health anxiety.  Does anyone think that I could be having little heart attacks instead of cortisol spikes? I'm getting scared.  This doesn't happen during the day.

[Rosetta]

I slept through until about 6:15.  Then I woke up in a panic with my heart pounding.  I tried to lie there, but I'm feeling an intense sense of loss.  It mostly centers around my daughter and how much of her life with me has been so different than I wanted it to be these past 2 years.  It's very hard for me that she is growing and changing so much.  I want to go back to when I was healthier and see her and be with her when she was 4 and 5.  I want to relive these past 2 and 1/2 years, too.  I feel enormous grief that I can't change the past.  

 

I feel so horribly betrayed by the people who were supposed to care for me from the time I was 8 when my mother took me to live with her.  I think I'm experiencing the trauma of being taken away from my grandmother at a very deep level.  The adrenaline and cortisol issues bring that up.  I'm angry with my grandmother for letting me go.  I feel the need to cry, but the tears won't come very well.  Instead I feel intense tension in my chest and my jaw.  My eyes are wet.  

 

I'm grateful  to have only 2 spikes.  I normally would like to sleep longer, but Im not going to risk another spike.  It would take me 20 minutes to get back to sleep anyway and I have to get up at 7:15.  It's better to let my system calm down from here and not risk another spike.

 

The director at my daughter's preschool is retiring and this is the last week we can visit her there.  I'm feeling very emotional about that.  I want to take my daughter to visit today or tomorrow.  Everything will change when the director is gone.  The whole vibe of the place will change.  I don't know why I care so much as we can't go back really -- my daughter isn't 3 or 4.  It's all in the past.  The kids she knew there aren't there.  Many of the teachers have been replaced.  We can visit the director and a few teachers one last time.  It's especially hard for me because I feel so much pain about how my life has been since my daughter was 5 that last Summer at the preschool.  It was then that my Zoloft dose had been raised and dysautonomia became much worse.  My system was on high alert, but I was functioning then.  It was the following Spring that I quit Zoloft in mid-February after tapering since late December/early January.

 

I'm so grateful to have others here who understand what I'm going through.  This is very painful on an emotional level.  Very, very painful.

[Rosetta]

The anxiety stayed with me most of the day.  I had a bit of time after my walk when I felt somewhat ok.  I feel that everything is "wrong."  I'm uncomfortable emotionally.  It's mostly anxiety, but also a feelng that the world has gone mad.  Other people are nuts, and there's a lot of disruption.  My mother in law has been anxious since she was prescribed Ambien.  She recently stopped using it, and she seems to be feeling bad -- anxious, staying home a lot, etc. 

 

I have to see my mother on August 8th.  I'm not looking forward to it.  My husband is anxious and irritable.  I don't have anyone close to me who isn't struggling right now.  I long for feeling relax and safe.

 

Evenings are anxious for me lately -- the past several days.  I don't want to fall asleep.  I feel as if I'm going to a bad place if I do.

 

Edit:. I have been feeling sleepy the last few afternoons.  I can't take the time to sleep because I'm usually too far away from home or I'm afraid it a nap being "toxic," and I don't actually fall asleep.

[Rosetta]

First spike of the night at 12:00 midnight.  Feeling the overheating a bit, but not as much as it could be.  Stomach feels slight sour.  Not too bad.  Anxious and sad.  Time slipping by.  I feel I'm wasting my days.  I feel very disconnected due to the anxiety.  I'm too focused on how bad I feel and distractions don't include my daughter and husband.  I need to find an activity I can do with them -- each of them.  Something that makes me feel connected to them.  My husband swam today after our walk, but I couldn't.  It was hard to get myself to take the walk.  Preparing for swimming and cleaning up afterward seemed too much.  Trying to get my daughter to do anything I can be mentally present for seems impossible.  There must be something.  I'm not much fun I'm afraid.

[Rosetta]

Second spike was at 5 am and third at 7.   Same general feeling that all is not right with the world.  I know my life is safe, I'm safe, my family is safe.  I can feel it, however.  I feel that I'm living in a war zone, not that I know what that is like, of course.  I try to remember there are people in true danger and I'm very lucky.  I suppose I can't be satisfied unless everyone is safe which is impossible.  I feel guilty about being a hear no evil, see no evil kind of person, but in my poor state I can do nothing to help either. That bothers me a lot.  I can't even clean my own house.  It's a disaster.  I have to accept it for now.  I have to accept all of this.  Somehow.

[Rabe]

SO happy you got to the beach, Rosetta, with your daughter.  That is so special!  Also grateful to read your skin issue is benign.  Sometimes those worries alone can cause issues.  Thinking about you lots!!💜

[Rabe]

Im Sorry  Rosetta.  My computer only bought up last page and not this one....Im sorry you are still having the cortisol spikes, anxiety, sense of loss and so much more.  

You have so much bubbling up from so many places right now it seems...its understandable that is overwhelming.  Waves within waves.  Your body seems to want tio heal so badly.  I am so thinking about you and wish I could be there to hold you and tell you it will all be ok.  Im hoping the next school director will be a good one.💜

[Rosetta]

Oh, thanks, @Rabe. My thread is hard to read right now.  Thank you for coming by.  I hope you are still feeling better.  I'm always thinking of you.

 

Today got better as it went on.  Spikes last night were not as strong.  Woke up with one, and had strong anxiety this morning, but I was able to go for a walk, to see my daughter surf, and I swam in the ocean.  That's an improvement over the day before!  I got cold quickly.  It felt kind of good.  Not like it should, but kinda of good.  My daughter had a good day.  That was nice.  

 

Yesterday was very strange.  I had a "time travel" feeling.  When we were at the preschool I felt as if my little 3 year old was in one of the classrooms.  My daughter was right there, 8 years old, standing in front of me in the office area, but I felt as if I could walk into the classroom next door -- the one she had when she was 3 -- and her 3 year old self would be there with all the other kids.  There was no sound from the room.  The kids had all gone home.  When we left the school, I cried.  I felt as if I had left my little toddler there.  It was as if the past was right there within inches of the present, and I had walked away and driven off without my child.  In reality she was sitting behind me in the car.   I often feel that way when I think of the preschool.  I feel that's she's still there with the teachers and the director, but I'm not allowed to see her or take her home.  With the director leaving I feel that -- I don't know what exactly -- that the bubble popped and my 3 year has disappeared?  I'm not sure.  I don't feel this way about the school where she was in kindergarten.  I feel that I brought her home from there and she grew up.  It's so odd.  I suppose it's because the WD syndrome started while she was in preschool although I didn't quit Zoloft until she was halfway through kinder?  I miss my 5 year old, too, terribly, but I don't feel that's she's still at the other school.

 

I don't look at pictures or videos of her from when she was little.  I'm afraid it will be too painful.  These neuro-emotions are so strong and difficult.  I feel as if I'm living through a Sci-fi horror movie.

 

I hope I sleep well tonight.  I hope I wake up calm.  This crazy wave has to end eventually.