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

[wantrelief]

Hi Rosetta,

 

I am so sorry you didn't get good sleep last night...I know how hard that is.  I wanted to let you know that I related to much of what you wrote and you are not alone.  You do so much for others on this site, even though it must be difficult for you.  I am thinking about you and sending big hugs down to you in CA - WR.

 

 

[Hazel]

Thinking of you Rosetta and hoping things improve for you very soon🤗

[Rabe]

@wantrelief I agree with you so much!  What you did Rosetta was open a door for others...thank you!  We dont have to hide and that is a good thing!

I believe you have helped and will help so many with your post though it must have been so hard for you.  Thank you and bless you!  With the help of each other, learning from each other, sharing with each other...we are healing with each other.  💜 

[Rabe]

Im sorry Rosetta that your sleep was not good...did you get out today or no?  I was so excited that you two were heading for the zoo!

 

I feel so much of what you wrote again...the feeling lonely, the being on hold, the wasting time, the lack of goals, and the MIND NOT LEAVING ONE ALONE!!!  UGH!  I keep telling mine to be quiet...but it doesnt listen.  

I also feel I have no purpose anymore...I always had number of purposes and things that fed my soul.  I miss that a lot and not having it feels quite empty often.  

The flowers in the spring will be beautiful in many ways...💜

[Carmie]

 

Hi Rosetta, 

 

Im so sorry you’re going through such a hard time. As Rabe said sharing your story does help others. This process is so hard, and yes reading the things here on SA can make us very sad. I find that I have to have breaks from reading all the sad stories too as it breaks my heart to see so many people suffering so much. 

 

Im having a very stressful time at the moment, not related to withdrawals at the moment though, n I’ve shed tears n am in pain of heart. Then when I read other people’s sadness it adds to my sadness. I like encouraging others just like you do but I do need breaks away from here as it hurts to see so much suffering. 

 

Wishing you all all the best n sending big hugs🤗

[direstraits]

Hi @Rosetta

so sorry to read what you've had to endure in your life,sounds absolutely horrible.

I guess many of us here had toxic parents,probably why we ended up on meds.

 

I think you must be a very strong person to be doing as well asyou are.

You mentioned you're 49,I'm wondering if perimenopause is playing into your situation right now.

it can be a difficult time,especially when in WD.

 

just wanted to offer my support to you and hope you can get some relief from your suffering.

sending a big hug to you,ds

[FarmGirlWorks]

1 hour ago, Carmie said:

This process is so hard, and yes reading the things here on SA can make us very sad. I find that I have to have breaks from reading all the sad stories too as it breaks my heart to see so many people suffering so much. 

Said perfectly. Occasional breaks are necessary as the "sad overload" can be too much to bear. And it is soooo hard to not have a defining purpose. I used to hang my identity around that and now? It's as if I have no identity anymore or, better put, I am tunneling through the depths of earth to grow a new one. I firmly believe you will too, @Rosetta. It's so tough right now though.

 

1 hour ago, direstraits said:

You mentioned you're 49,I'm wondering if perimenopause is playing into your situation right now. it can be a difficult time,especially when in WD.

So, so true. I'm around that age too and it is impossible, for me, to suss out what is WD and what is hormones... probably both.

[Rosetta]

@wantrelief @Rabe @Carmie @FarmGirlWorks @direstraits @Hazel

 

Thank you all.  I really appreciate your support.  

 

Of course, I have an identity -- as a mother.  I never expected that to be my only ID, but I would want it to be during these years if I could.  I think I would be happy with that if I were not walking around with a scrambled brain and struggling to make and keep friendships going.

 

I have been so very exhausted today.  I feel I can barely keep my eyes open.  It's ok.  Very little anxiety at least!  I haven't had to do much.  I went to the school library with my daughter.  Then we walked home.  That was very hard for me. It was hot.  I had some electrolyte water.  The dystonia has come back tonight!!  I just have to hold on another few months, and I will be a lot better.

 

My daughter didn't eat the yogurt in her lunch today.  She was very whiney after school.  Getting homework done was hard. She didn't get enough sleep last night either -- about 8 hours.  She needs 11.  I don't know why she woke up at 5:30 and didn't sleep again.  Trying to get dinner over and get her to bed.

 

 

[Rabe]

Hi Rosetta...sorry for a challenging day., but SO happy for you for the very little anxiety!!!!  Thats a gift!!!  

Yeah...sleep deprived kiddos can be a real challenge...glad you two had some time together at least.

I hope you to sleep well and that tomorrow is better, Rosetta.  💜

[manymoretodays]

Hi Rosetta,

I did read your post of last Saturday........all the way through.  It didn't cause me any difficulty to do so.......just so you know.  Even though I've had stuff happen too.  I bet a lot of us have.

Excellent though.  How you wrote it all out.  Good job.  I kind of want to comment on the mother and then motherhood aspect.......I don't think I will today though........other than to say that...... in my own life.......for all I have achieved and done......I finally came to the conclusion that, for me.......the best job, and calling I've ever had was being my son's Mom!  I came to that conclusion quite some time ago.

 

Thank you.

 

Love, peace, healing, and growth,

mmt

 

[Rosetta]

Thanks for being there, Rabe.

 

@manymoretodays, Thanks.  

 

It's just really too bad that I didn't get proper medical care all those years, and then to have an OB who never met me and would never see me again because that's how Kaiser Permanent works -- you show up in labor and the doctor who happens to be there manages labor until his shift is over.  Then you get the next doctor who comes on shift who may not agree with what the previous doctor was doing -- mine didn't.  Then, you go to recovery where a completely different OB -- who will never see you again -- ever -- changes your medications -- psychiatric medications included!!  And the fallout is not even monitored by anyone at all let alone anyone even remotely qualified.  No psychiatrist or neurologist was ever involved despite the fact that I had symptoms of dystonia while in labor.  No one noticed.  I had no idea.  It's a recipe for disaster, and these people are being paid a lot of money to "care" for us and our babies.  It's a racket.  After $10,000 a year in premiums -- premium that did not cover the birth -- that was another $3,500 out of pocket -- that's the abysmally inadequate care I received.  Healthy mothers indeed!!

 

Journal:

Last night was pretty awful -- dystonia, awake for about 2 1/2 hours from 12:30 to 3.

Morning: cortisol awakening at 6:45, severe anxiety prior to school drop off.  It was impossible to hide from the muchkin, and I stressed her out.  I stressed my husband out.  I held back the tears until after drop off.  Then, I broke down and cried for a couple of hours mostly over how much harm my stress is causing my child.

Walk: About 3.5 miles

Poor appetite

Severe muscle tension in face most of the day

Picked up my daughter, suffered through her painfully slow and anxiety ridden slog to get the homework done

Went out for frozen yogurt and grocery shopping

Dystonia continues

Bedtime soon

[manymoretodays]

And ugh......that sounds awful Rosetta.  I spent a fortune on some really bad treatment as well.  HMO's(health maintenance organizations) have not improved health care.  I actually remember the BEFORE that whole concept came along.  We've got a long road ahead in this country.......as far as improvement goes with holistic care of an individual and decreasing the reliance on pharmaceuticals, not only in the mental health sector, but in general health care too.

 

Did you just get your initial drug treatment from a GP or a shrink?

 

I had to pay $2,000.00 out of pocket, way back........when my Sun  was born.  Because of an insurance glitch........I did not notify them in the correct way.  And plenty of high co-pays for all the psych baloney sandwiches that I've eaten.

 

It is a racket!!!

 

Have you seen any improvement in the symptoms you were having back when you arrived........the dys-  kinesia or tonia........of your right eye, arm, neck, tongue, and face?  I did see your symptom note.....dystonia sounds like the right term.  Just wondering on improvement overall.  I think the tension in your face must be part of that.  What a horrible symptom to endure.

Oh.....I am hoping so........I can't believe that nobody caught....... what was going on with you in the medical profession!!!! 

 

Love, peace, healing, and grrrrrowth,  and a couple gentle hugs if you'd like.........((( )))

mmt

 

Edited August 29, 2018 by manymoretodays
elaboration, additional thoughts

[Rosetta]

@manymoretodays Yes, there has been improvement.  It is less intense now than it used to be.  Sometimes it gets a bit more intense and sometimes it's possible to forget about it, but the really strong and painful twisting feeling that I used to have hasn't happened in a few months.  The headaches are rarer, too.  

 

The initial drug treatment was from a GP before I had Kaiser.  I had a PPO at one point, too since the original prescription.  There was never any talk about side effects or assessments to see how many side effects I had or how intense they were.  I didn't even know Gastonia was a side effect.  Of course, I had no idea that if the side effects were a problem I could not simply quit!

 

Today is just crummy.  I feel bad in general all over. It's not as bad as I have felt in the past.  I'm simply very, very tired of feeling bad for so many days of my life.  

 

I did my 4 mile walk today.  It was difficult to do, but I did it.  I wish I could take a nap without risking a cortisol spike.

[Lilabella]

7 hours ago, Rosetta said:

@manymoretodays Yes, there has been improvement.  It is less intense now than it used to be.  Sometimes it gets a bit more intense and sometimes it's possible to forget about it, but the really strong and painful twisting feeling that I used to have hasn't happened in a few months.  The headaches are rarer, too.  

 

The initial drug treatment was from a GP before I had Kaiser.  I had a PPO at one point, too since the original prescription.  There was never any talk about side effects or assessments to see how many side effects I had or how intense they were.  I didn't even know Gastonia was a side effect.  Of course, I had no idea that if the side effects were a problem I could not simply quit!

 

Today is just crummy.  I feel bad in general all over. It's not as bad as I have felt in the past.  I'm simply very, very tired of feeling bad for so many days of my life.  

 

I did my 4 mile walk today.  It was difficult to do, but I did it.  I wish I could take a nap without risking a cortisol spike.

Dear Rosetta,

 I have been reading your thread, and feel so much of what you do, although I'm so much earlier in this journey

I , too was prescribed things without any research or explanation of the risks or side effects. Then things escalated very very fast.

After being prescribed three different things I had no follow up fafter either one to see what side effects I was experiencing or how I had dramatically changed as a person in such a short space of time. 

. I just thought I'd send you lots of love and compassion for your suffering. Life it seems is not fair and we are all incredible for coping with this for even one day.

I have a young child I know the agony of which you speak. I hope they will get through this too You sound like a lovely person..

Hugs and peace and gentle thoughts to you,

Lilabella

 

 

 

[manymoretodays]

16 hours ago, Rosetta said:

 I didn't even know Gastonia was a side effect.

 

Rosetta,

What's gastonia?    Or is it a typo for dystonia? 

I know.....no assessment for side effects, from those who should be assessing for them. 

 

So you had some dystonia while on Zoloft or Celexa?  I had some dystonia and a mild dyskinesia while on the drugs.  Just the upper back stuff now, mainly when stressed.  Why can't I meditate it away.......like some guru!  I'm more prone to just call it tension now.  I'm sure it's a milder form of what you experience at present.

 

  I briefly worked in what I'll call "an institution" for troubled kids........and passed so many medications, some just recently prescribed......it was crazy work.  I couldn't do it.  I just could not.  I didn't even know then, what I've come to understand for myself.........it all made me so uncomfortable though.  I'd have to go in to work an hour early......just to set up all the medications.........that took a full hour or two.........then go pass them all, and record that they were given.  And it was a long 12 hour night shift.......so then I'd have to contribute to paper work on each case........often without having spent any time with the kids.  Not my kind of work at all........never again.  Most of the rest of the staff at night seemed to be some real tough Tongans........like a gang or something.  It was a little.........well, I quit.

 

I hope today is a good one for you Rosetta.  Love to your little one.  School break for the holiday I hope.  Sleep in.  Eat. Relax.  Do what ever you want to.  Keep walking strong!

Love, peace, healing, and growth,

mmt

[DMV64]

22 hours ago, Rosetta said:

I wish I could take a nap without risking a cortisol spike.

You and me both!! I am sorry you are feeling bad. There are some good days. I try to remember them. Sometimes I draw a little picture of my good day.

[Rosetta]

Thank you @Lilabella and @DMV64

 

Ugh, NOT Gastonia!!  Whatever that is.  It's capitalized by autocorrect!  Maybe it's a province somewhere? Oh, good grief!  Is a city in the state of Georgia, USA.  Yes, I meant dystonia.

 

I'm not very good company.  So, I'm keeping to myself.

 

Journal:

Last night was not as bad as the night before.  I went to bed with very strong, painful tension in my neck, head and chest.  When I woke up it was gone.  During the night, I woke up once, and I went back to sleep without much trouble.  At about 5:00 am, the cat -- who was not supposed to be inside -- jumped up on the bed causing me a big adrenalin burst.  I felt bad and worried and sad after that.  I never really got back to sleep.  My daughter was thrashing around by 5:30 and fully awake by 6:00.  

 

I didn't have have time for my walk today, but I did get some sunshine and had lunch out.  It's 2:30.  Again, I wish I could take a nap.

[mirage]

@Rosetta Thinking about you and sending hugs and prayers. Wishing you better days friend. 

[wantrelief]

Hey Rosetta - I am thinking about you too.  I am sorry you didn't get your walk in today but the sun and lunch out sounds good.

[Kostas]

13 hours ago, Rosetta said:

.  At about 5:00 am, the cat -- who was not supposed to be inside -- jumped up on the bed causing me a big adrenalin burst. 

Hi Rosetta,while sympathysing with you for this ,reading it suddenly, really made me loughing quite a lot! 

So you made your good action today! 

Take care 

[Rosetta]

Last night: 12:30 or 1:30 wake up.  Did not check clock.  

Fell asleep again.  Not too much worrying.  

Cortisol -- mild at 4:30 am - Heated shoulder wrap

Dozed

Wake up at 6:00 -- tired, needing more sleep

Tried to doze - may have slept again, not sure

Got up at 7:00

Felt mildly anxious, irritated

School drop off

Anxious, irritated

Breakfast - decaf

Bathroom issue resolved (after 3 days; magnesium dose is very hard to determine - taking too little now, I guess)

Felt calmer

Walked about 3 miles - overheated

Electrolyte drink

Felt calm

Walked to school and back -- overheated

Felt calm the rest of day

Tired -- 8:00 Bed

 

 

[Carmie]

Hi Rosetta, 

 

Time for me to put the headphones on in a moment n listen to a concert but I just wanted to say I’m thinking of you. I know you have really been struggling lately but I’m glad you had some calmness today. 

 

Sending lots of hugs n love💚🤗

[Rabe]

So nice to hear a good day Rosetta!!💜

[Rabe]

Well, I wrote that yesterday and forgot to send...Im sorry.  Hoping your day was a good one Rosetta.  💜

[Rosetta]

Thanks everyone.  Still in a dark mood.

 

Journal:

Awake in the night as usual.  Worried some.  Could not find the shoulder wrap.

The cat was in again!  Crowded me on the bed.  I put her downstairs and shut her in the kitchen.

Woke up at 6:00.  Could not go back to sleep.

Got up determined to make the best of the day, but found the cat had peed on my daughter's backpack and her stuffed rabbit which was inside.  I tried not to let it ruin my day.  I failed.  Enormous adrenaline build up ensued.  Had a crying spell after someone used a leaf blower.  My husband stayed home because I was so upset.  

Helped my daughter read a book for her school work (20 minutes of reading a day/20 days a month).  That's 5 days a week outside of school! I'm not convinced it's a good idea for her to have that much pressure at this age, but I'm hoping that doing 2 days (40 minutes) on weekends will cut down on the whining and crying during the week.  

Watched a TV show.  

Took daughter to the park for about an hour.  

No walk.  

[Carmie]

Hi Rosetta, 

 

Sorry about your dark mood. Just wanted to send u lots of love n hugs. I’m sorry you are so sad n everything is overwhelming at the moment. 

 

I wish you have a window in your emotions soon. I got scared myself last night due to symptoms. It’s hard but in this journey all we can do is take a moment at a time n hope the good moments eventually peek through the bad ones. 

 

Wishing you some sunshine ☀️☀️in the future 💚

 

 

[Rosetta]

I don't know what I'm feeling.  I'm confused.  I want to hide.  I'm lonely, but I want to be left alone.  I don't know how to go forward.  

 

Sleep was not too bad last night.  The usual middle of the night wake up, the usual feeling of wishing I wasn't waking up to anxiety and fear and uncertainty over and over again.  There was probably a cortisol spike in the night, but I woke up without one --or maybe a slight one -- at about 5:30 or 5:45 am.  Much too early.  I wish I could sleep later to postpone all the bad feelings I have in the mornings.  

 

Today, I'm having the usual feeling that I am wasting my time by being unable to enjoy my daughter and my own life.  This is a time to just accept.  It's so terribly sad.  I can't force myself to feel calm and safe.  So, I have to work around this drive to isolate.  If I can force myself out into the world sometimes I can enjoy time with my daughter during the anxious times.  

 

I try to remember that we have time in the evenings together.  I read to her at night, and we both enjoy that.  We snuggle in the bed in the mornings if we have no where to be.   We had that time this morning. That is nice if there was no cortisol spike that sent me reeling.   It's hard if my mind is racing.  

 

I am trying to find the motivation to go to the beach.  I'm not having much luck.

 

With everything out of place here in the house, I feel trapped on the couch.  I can't stop the flow of things into the house.  I can't stop the displacement of things.  I can't pick things up it seems.  I have times when I have the brainpower to pick things up and organize, but I get tired halfway through.  My mind is still working then, but my energy level is suddenly down.  So, the things I have started to organize sit there for days on end and eventually they are moved by someone.  Then, I have lost all that effort and all that time I had spent.  This happens over and over again.  I can't make headway.  This makes me feel SI.  I am trapped.  How long will I be trapped?

[Rosetta]

Terrible, terrible meltdown today.  I think I could have avoided it if I could have been alone, but I didn't have that option.  

 

I think I cried yesterday for a while.  I don't remember exactly what happened.  I know I felt very bad.  I couldn't go anywhere.  I was too nervous and afraid.  I couldn't have my walk.  I wanted to have a beach day this weekend, but I just could not go.  I felt terrible for my family missing a day at the beach, but I couldn't go, and my husband went to see his mother without me or my daughter.  My daughter went swimming with my husband and was low energy afterward.  She stayed with me.  I felt guilty, but I tried to remember that a lot of kids stay home with mom at least one day a week.  

 

I was very irritable before bed last night.  Sleep last night followed the same pattern as the last -- waking up around 1:30, worrying, etc.  I was awake too long.  I listened to the crickets for as long as I could, but I kept thinking that if I fell asleep with the window open, I would wake up too early to the sounds of crows or trucks.  So, I closed the window and turned on the fan.  I woke up at about 6:00, probably.

 

This morning, I thought I was holding on pretty well for the degree of anxiety I was feeling.  According to my husband that wasn't true.  I don't know.  I don't perceive my behavior and reactions the way he does I suppose.  He's on edge.  I've been feeling bad for several days now.  He believes I was snapping at him and my daughter.  I did not intend to.  I was very anxious about the cleaning people coming today.  I'm anxious about their arrival for days prior, and when they are here I feel extremely upset.  

 

I had watched a little tv before my daughter got up.  I had breakfast with my family.  I helped my daughter read a book.  

 

The people who clean moved some clay things my daughter had made and damaged them.  I had an huge adrenaline spike, and broke down in tears.  Then, I got into a discussion with my husband about how I need the world to just stop, and we both cried.  

 

He is so frustrated.  He says he doesn't expect me to be able to feel differently, but that all the rules I have for trying to keep myself safe from a cortisol or adrenaline spike are making it impossible for us to live normal lives.  He's right.  He says he doesn't expect me to do anything differently, but if I ask him to help me figure out how to make things better, he will tell me the truth.  The truth always hurts.  I need to avoid talking with him about these issue when I have had a "scare," like today.

 

I didnt get my walk today either.  Three days in a row with no walk.  If I'm extremely anxious, I can't go alone, and we had no one to care for my daughter.  

 

 

[wantrelief]

Aw, Rosetta....I am so sorry you are having a rough time.  I wish I could give you a big hug in person.  Thinking about you - WR.

[Rosetta]

Thanks, Wantrelief.  That hug would have been much appreciated.  

 

@mirage @Carmie @wantrelief  Thanks for looking in on me the past few days.  Glad you could laugh @Kostas.  This cat would be at the no kill shelter in a heartbeat if my daughter wouldn't be scarred by it.  She's adding so much stress to my life, but, of course, I can't teach my kid that pets are expendable.  

 

I think I'm having some "improvement."  I woke up with a cortisol spike at about 6:15 or so.  I was pretty calm regardless.  I went for a long walk (3.5 miles) and now I'm in that phase "after the storm" when I feel sleepy and relax, but somewhat sad.  It's a huge relief.  My hope has returned - a cautious hope -- I know I'm going to have another wave.  It's overcast today.  I'm going to savor the feeling of semi- relaxation that I so rarely get to experience for 15 minutes before I walk to pick up my daughter.

[Rabe]

💜💜💜💜💜happy to hear Rosetta..

[wantrelief]

I am so glad you are getting some relief today, Rosetta!  

[mirage]

@Rosetta You sound really good. It is so hard, when in a wave, to remember that we have felt better and that things get better. For some reason the waves have way more power over us than the windows. I am so glad you are doing better.

 

Hugs and prayers

[Carmie]

Hi @Rosetta

 

So glad to hear that you’re getting a bit of reprieve, it made me happy to hear that this morning.

 

Sending you sunshine☀️☀️☀️

[DMV64]

On 9/3/2018 at 9:46 PM, Rosetta said:

all the rules I have for trying to keep myself safe from a cortisol or adrenaline spike

I understand so well. You are not alone. This is really hard work but the good news is some days are better. I am so sorry you are having a hard time. Sending hugs.

[DMV64]

And glad you are feeling better!