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Rosetta

Rosetta: CT May 2011 and too fast taper Feb 2017

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Rosetta

I have been struggling the last few days.  Quite irritable.  Somewhat anxious most of the time.  Angry a lot.  It’s a wave, I guess.  
 

Trying to homeschool is so hard.  I started playing piano again to cope.  

 

Still taking walks.  

 

My daughter’s birthday is coming up.   I’m anxious about that.

 

I’m anxious about Covid-19, too.  

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Rosetta

Poor sleep.  Waking up early and feeling fearful.

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Rosetta

Difficulty regulating temperature.  I woke up sweating in the night like I used to.

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Rosetta

Akathisia this morning.  Awful meltdown.  Not the worst I’ve had, of course, but pretty miserable.  Lingering mild aka all day.  Tired of this coming back.  Getting in a bath now.

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FarmGirlWorks

Hi @Rosetta... it is so damn disappointing when our bodies go careening back into Withdrawal World.

That akathisia is back again -- well, ugh.  Sending the best of vibes your way.

 

Thanks for stopping by my thread.

Still in a wave but got TOTM (haven't had one since early February) and the irritability

-- which was off the hook last week -- has decreased in the last couple days but the intense brain fog and fatigue are still present.

Of course, what is happening in society at large is affecting our health too

although I am hopeful about how it will shake out in the next decade.

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Rosetta

Thank you, FarmGirl.  I’m feeling pretty lonely.  Lots to do to get ready for the online birthday party, so that’s good.   Hoping it goes well.  My daughter is feeling extremely lonely.  Maybe this will cheer her up.

 

I hope you feel better soon.  You are struggling I know, but you are so strong and willful.  Good traits to have with this illness.  Hang in there! @FarmGirlWorks

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wantrelief

Thank you for your message on my thread, Rosetta.  I am sorry you have been in what sounds like a wave recently.  You have made such great strides in your healing....you will get back to that better place.  I am also sorry you are feeling lonely - me too.  Your message cheered me up so hopefully mine will for you as well.  You are not alone.  💖

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Rosetta

Hi @wantrelief Thank you!  💖

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Rosetta

Yesterday was a little better.  
 

I’m waking up every morning with cortisol surge.  I’m not waking up at 5 or 6 with it.  I’m waking up at about 2:00 or 3:00 feeling a bit scared, but not terrified.  I’m awake for a couple of hours, while my muscles become more and more contracted.  Then, I fall asleep again at about 5:00, and I wake up around 7:30 feeling slightly anxious.  I get up, and I’m ok until someone else in my household gets upset or something goes wrong.  I’m very on edge, but managing until something puts me over the edge.  I used to just sit through this morning time period by myself when my daughter went to school.  That’s how I handled it to avoid an increase in the problem.  I can’t isolate myself now.  

Yesterday, there was a bit less turmoil in my emotion.  I’m was and am still quite clumsy, nervous, and suffering with a lack of control over emotions.  I get confused easily.  I have to choose the simplest breakfast so that can make it without mishap.  I’m dropping things.  
 

I’m aspirating saliva because one side of my throat is partially paralyzed.  My nights are harder again.  I think dystonia is part of what makes them so hard.  I wake up with pain in my jaw, chest and neck from muscle rigidity.  That’s a dystonia type thing, I believe.  I don’t have the twisting feeling very much in my neck  the way I used to.  That is not intense the way it was before.  My forearms and the fronts of my calves ache again.  My left elbow hurts when I wake up.  That had stopped for a while.  At least it’s probably not arthritis that will continue after I heal from WD if it can come and go like that.  The aching in my legs and arms starts just before bed.  It goes away in the middle of the day.  This is a sign of akathisia for me.  It ramps up through the night and explodes at 2:00 in the morning.  Why I sleep again between 5:30 and 7:30 I can’t explain.  The most severe part is after I get up in the morning.  I don’t feel the need to walk around.  That’s never been a part of it.  Maybe because the dystonia is stronger at the time?  I want to hide.  My forearms and the fronts of my calves used to vibrate, and I can feel that now a bit, I think.  If I read, the muscle contractions gets worse not only in my neck and neck, but my arms and legs.  If I watch TV sometimes it gets better.  I’ve been having shooting pains in my right abdomen.  They are very short time wise.  I wonder if this is a muscle spasming.

 

This morning is bad.  I can’t homeschool.  I just can’t.  My emotions are too fragile.  Her frustration causes me to feel sudden fear and anger.  I tried to solve that problem by asking my daughter to do iPad work.  That backfired.
 

I’m confused.  If I’m interrupted I lose my train of thought.  I get very upset when I can’t think straight.  I can’t believe I’m back to this, but at least I know it will go eventually.  I’m getting tired.  I’m afraid of the period of depression that tends to come after one of these waves.  
 

The worst part is the horrible example my child is seeing in terms of dealing with stress.  Even when I’m doing all I can to control my actions, everyone can see that I’m boiling over with rage on the inside.  I try to teach her to breathe and take a break, etc. when she gets upset, and I see her reaction is just like mine would be.  She is even more furious that I suggest she stop and breathe.  She resists it will all her might.  
 

It absolutely kills me.  It doesn’t matter to her upbringing that my body and brain are overreacting to minor stress in a way that is not at all natural.  She’s learning that minor irritations are reasons for high stress.  She’s seeing me react in the wrong way.  I keep talking about what I’m doing “wrong” and trying to educate her about the fact that I must struggle to control my reactions, but I don’t think that’s enough.  I keep apologizing.  She needs to see me calmly approach a problem or calmly walk away from a problem.  My brain just hijacks me, and it’s very unpredictable whether I can react in the right way.  Some days I can.  I’m surprised; my husband is surprised; my daughter is surprised.  It gives me hopes, and then a wave like this comes, and I wish I could isolate.  However, I can’t isolate from my daughter.  That would be equally damaging.  It’s awful.  I don’t want to pass this down to her.

 

One thing that is very clear is that this is a wave.  Whereas I used to have near continuous waves, and it was hard to determine where one ends, this time it’s quite clear.  I was going along ok, and then I started to decline.  I’ve been declining for a few days, maybe a week or more.  I hope I’m at the peak of this wave, but at times they seem to leak and then sink and then peak again over just a couple of days.  

 

I started running again.  I ran three days ago, and I had my worst day the next day.  I tried again the next day to experiment, and I had a better day the next day (yesterday.). I did not run yesterday.  Today is starting off rough.  The iPad program for math that my daughter uses for school is glitchy.  It upset her this morning, and her upset caused me to overreact.  I caught my reaction just barely in time this time.  I started to get upset.  I reacted with increased anxiety, but then I stopped it.  Then, started to cry.   Maybe that’s progress?
 

I used to think jogging created more cortisol.  It’s not supposed to, of course.  It’s supposed to help to control cortisol in a normal person.  I suppose I could be past the point in WD or PAWS when running has a negative effect.  I don’t know.  I do know that I need to exercise, and running is my only option right now.  I haven’t tried to run since Fall if 2016.  While I was running the other day, the amount of energy my muscles received was more than it was back when I tried to run in the Fall of 2016.  That’s when WD was the worst for me.  I could barely walk up the stairs.  My muscle had almost no buy in from my body.  Jogging was a joke.  I was really just shuffling forward taking short steps, but I do believe it increased cortisol, or I did believe that at the time.  Who knows?  The cortisol kept being a problem for years after I stopped jogging.  
 

Having the akathisia come back is really hard to take.  I feel that I need to try running to see if it helps.  I’m afraid it will make things worse, but I don’t know what to do.

 

Thats all I can write.  This is better than before.  I have had much worse times.

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Sheera

@Rosetta I am so sorry to hear this. I am also struggling with the emotions and home schooling.  My children are seeing the same things. It’s difficult. I’m glad you know it’s a wave and are acknowledging that it will get better. As I was reading it, that gave me hope for my current wave. So, thank you for reminding me that this too will pass. You have improved. You will get better and then the better will be great.  Hang in there friend. I’m thinking about you!

 

hugs—Sheera 

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Rosetta

Thanks @Sheera  I hope things get better for you, too.  Maybe we should suspend homeschooling for this time and tack on more at the end of year?

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Sheera

@Rosetta I think you should give yourself the grace to do that. In my mind, it’s not worth it for our own healing and mental health. Or maybe just wake up every day knowing you may only get a small fraction of the assignments done. ❤️❤️❤️ I know our district will be doing review at the beginning of the year next year so keep that in mind. We weren’t mean to be all the things for our children!  Thinking of you—

 

Sheera 

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Rosetta

Thank you @Sheera.  
 

I’m struggling through the days, but they do seem to each be slightly better than the day before.  I was able to throw food into the instantpot last night.  I made grilled cheese for lunch today.  Simple, easy things — not only can my brain grasp the concepts easily, but I can get them done.  
 

The nights are not easy.  I wake up with a cortisol surge every early morning..  My  jaw, neck and chest are tight.  I’m awake for a couple of hours, and then I fall asleep around 5:30 if I’m lucky.  Sometimes I’m awake for 3-4 hours.  
 

In the day, I get a blue line over my top lip when I’m feeling a lot of muscle tension.  My husband notices this.  Sometimes, my face gets red.  He notices that.  I’m more anxious than usual.  My husband thinks I’m feeling worse than I have in 6 months.  He’s probably right.  My anxiety is at that level.  The pain is not as bad as it was last month.  I’m very, very uncomfortable, but I’m not in much pain from the muscle tension.  The nights are not quite that bad, but the days are, I suppose.  
 

Of course, my husband isn’t feeling well.  We keep feeding anxiety back and forth to each other. My poor daughter.  She’s anxious.  I can’t describe how devastated I am that she is suffering through this. She’s 9 now.  She was almost 6 when I quit Zoloft.  I had no idea I was putting her upbringing at risk.  How will I ever make it up to her?
 

I’m exhausted.  I might take some Benadryl tonight.  I need rest.

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Rosetta

Today was a better day.  I was not as irritable, clumsy nor did I have much trouble with sudden anger or frustration.  Last night right before bed, I felt pretty anxious.  I wrote yesterday’s post at about that time.
 

I didn’t take Benadryl last night.  I fell asleep rather late, had the usual wake up in the night, but it didn’t last too long.  I didn’t have too much pain.  After my nightly wake-up, I was up until 5:30.  
 

About two days ago I had tummy troubles typical of my period: cramps, diarrhea.  No period though.  

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Rosetta

Dystonia issue
 

When I wake up in the night my tongue is pressed hard against the roof of my mouth right behind my teeth. I notice this happening in the day sometimes, too.  I think this dystonic action is what causes the pain in my chest, neck and jaw.  Or vice versa — the muscle contractions in my tongue and chest muscles cause my tongue to press against the roof of my mouth.  I also have sleep apnea, and it’s worsened or perhaps caused by this dystonic muscle contraction.

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FarmGirlWorks

@Rosetta: big props to you for moving through the physical symptoms. God, I really do not think it is unusual to be "worse" than six months ago. The field of anxiety we exist in when our systems are already compromised... it is effecting folks not in WD so why wouldn't it trigger us? Anyways, sending best wishes your way.

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Rosetta

Thank you, FGW. @FarmGirlWorks  

 

Yesterday was a lot better!  I’m having problems with dystonia, but otherwise yesterday was calm.  What a relief.  
 

I woke up at 3:30, and it’s almost 5 am now.  The lack of sleep is wearing in me.  Last night, I was up from about 2:00 maybe until around 5.  
 

I have a virus of some sort.  The roof of my mouth is raw.  I have to be careful what I eat.  I’m quite tired.  I didn’t even eat dinner last night because I was too tired.
 

I’m getting my walks.  Yesterday, my daughter and I sat by a creek for a while and watched the dragon flies and a water strider.  We saw a cocoon of some sort, too.  The creek is still running, but it’s clogged with algae now.  We are having a heat wave.  It was 90 yesterday.

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Rosetta

I slept well last night!  It was amazing.  I resisted taking a nap yesterday, and although I woke up in the night, I went right back to sleep.  It was great.  It’s been months since that happened, I think.

 

Today was a pretty calm day, too.  Oh, I wish this could continue.

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ShiningLight

Californian too here. Could some of this be the change in the weather? I know I'm reacting to it. I think I read that heat adversely affects nerve cell conduction.

 

You are one of several, or many (depending) role models for your daughter. She's going to be around multiple people with multiple different coping styles and abilities. She'll get some good stuff from other people, too. I would imagine that your anxiety and stress around wanting to be a certain way for her may be worse than your actual reactions to things. She is fortunate to have a mother that cares so much and tries so hard.

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Rosetta

Thank you, Shining Light.  I hope that is true.  I appreciate your support so much.  Thanks for writing to me.
 

Yesterday, I was going along ok, and coping with the homeschooling until I burned something on the stove.  This is all related to dysfunction of the flight or flight response, I’m sure.  How to fix it?
 

The night before last I slept nearly straight through.  Last night I was up for a little while.  I have hot flashes in the night, and then I wake up scared.  I kick off the covers.  Then I get cold.  This has been happening off and on for at least 3 years, but I noticed that it had gone away for at least a few weeks only when it came back.  I woke up scared —to different degrees — practically every night for many stretches, but the hot flashes and cold feeling come and go more.  Sometimes I just wake up scared.

 

Right now, I’m waking up scared every morning.  I know there’s nothing to be afraid of.  I know I’m safe.  It’s just my cortisol awakening.  Sometimes it last as anxiety and sometimes it wears off quickly.  It’s very tiring.  
 

I jogged again yesterday.  I hadn’t done that since the last time I noted it on my thread.  There does not seem to be a difference in the nightly cortisol wake ups.  However, I’m pretty anxious this morning.  It’s not fading.  Could that be related to the jogging.  I do have a zoom meeting with people I have not met before, but I think I’m just attaching my anxiety to that?  Maybe, I just don’t know.  I still get anticipatory anxiety.  I know that.  It happened for my daughter birthday which was on-line.  I really need to jog, and to get my heart rate up.  I can’t keep letting my muscles waste including my heart.  So, I hope the jogging is not contributing to the lingering morning anxiety.  I don’t know that I have any good way to find out.

 

 

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Rosetta

Today was a good day,  So grateful!

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Rosetta

The last two days have been much better.  I’m coming out of the wave.
 

I wrote this to someone about how WD causes the brain to allow far too much stimulation to reach our consciousness.  I used to call it feeling overwhelmed.  Now that it’s rare, I can see how different life is with the filter on my brain working again.
 

Being uncomfortable wearing clothes was a part of WD for me, and it is gone.  There is a brain-body connection that is disrupted by this syndrome.  There are many sensations that our brains tune out if we are normal.  I had to wear very soft, loose fitting clothes for a long period of time.  There were a lot of other sounds, sensations, smells, tastes and even sights that were very different than normal.  We do not realize how much of the world our brains filter out and ignore unless this happens to us.  It will go back to normal, but again, it is not necessarily caused by the drug such that removing the drug will fix it.  It is a part of the destabilization of your nervous system.  
 

The breeze on my skin was too much.  The inside of my ears itched.  I think I could feel the earwax moving from the inside to the outside.  Most people don’t know it does that, but as I was researching dysautonomia, I discovered that.  I couldn’t stand the feeling of the breeze on my skin, I couldn’t swim because the water was too cold in any pool or ocean, my eyes itched all the time, etc.
 

Sometimes drugs can cause certain side effects.  For people in WD, any further destabilization by tapering too soon could make the symptoms change or worsen.  We think of side effects from medication as a one way street: remove the drug and the side effects stop.  However, this is a different ballgame.  In a healthy, normal situation the removal of the drug would help.  With dysautonomia, PAWS, withdrawal — whatever you call it — we have to avoid further destabilization.

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Sheera

So glad you’re feeling better @Rosetta!  I hope your home schooling is going better. We are supposed to have one week left with my 10yo and I called it quits. There is other learning to be done that does not involve a computer. 😊

 

Take Care—

Sheera

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Armorall

Hi Rosetta,

I wanted to contact you because I know you are also a CT. Also, I've read that you are doing much better than the first year. Did you feel like you started to get worse through the first year before getting better? I don't see that narrative so much, and I feel like, at 9 months, my CNS is destabilizing more as time goes on, not the other way. My tolerance to exercise and and sudden movements during sleep have become more sensitized in reaction. 

Thanks,

Armorall

 

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Rosetta

Journal entry:  The last two days, I have had more pain from muscle tension in my face and neck.  
 

The days before yesterday was a very bad day.  I got very upset.  Fridays are hard days for homeschooling.  On that day, my daughter plays online with friend from another country at 11:00 am.  The time can’t be changed.  So, we need to get the school work done before 11:00.  I think we need to do what we can before 11:00 and not try again later in the day.  It was later in the day that we had a lot of trouble, and I was upset.  Any attempt to do school work after she sees her friend results in a lot of problems.  Some days, I have so much trouble with my emotions.  It might be better to do the left over work on Saturdays. Hopefully, it will be better.

 

In the middle of the night on the night before last, I woke up with my tongue pressed against the roof of my mouth and in a lot of pain.  Then, one of the lenses fell out of my glasses, and I just started crying.  Eventually, I found the lense, fixed the glasses, and took some Benadryl.  I was able to go back to sleep. Throughout the day yesterday, I felt pain in the same places. Having to read too much to help with the homeschooling may be part of the problem.  I took Benadryl at bedtime.  I slept well.  The nightly wake up was not too bad and didn’t last too long.  I did have my tongue pressed against the roof of my mouth both times when I woke up — in the night and this morning at about 7:15.  
 

I need new glasses with my new prescription.  I wonder if that would help.  The way I have to hold my head to read with my bifocals may be a problem, too.  I can’t use a desktop computer.  I can’t see it from a chair with either part of my bifocals, but it’s a bit easier with the lower part.  So, I suppose the screen needs to be at the level where I would hold a book.  That’s why I use an iPad.  
 

How to get new glasses right now I’m not sure.  Maybe the store is open.  Maybe I can find a way to make it safe.  I have the prescription that I got in August last year.  I don’t need an exam.  I just need to take my frames in, but I don’t have another pair to wear while I wait.  Wearing contact lenses made me dizzy and nauseous the last time I tried them.  I may have to just suffer through that to get this fixed.

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Rosetta

@Armorall I’ll try to answer you on your thread when I can read again.

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Armorall

Ok thanks!

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Rozon1

Hey @Rosetta! Do you feel over all better than you did when this journey first started? I’ve got an 8 year old and I feel the same. I’m doing my best at hiding it from her. Thankfully I think it’s working but I’m definitely not where I want to be with her. I tried messaging you, but I guess you don’t accept messages. Would of loved to talk to you about this 1 on 1 since we seem to be in the same situation. Do you have a Facebook? Either way, I hope you feel better! 

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Rosetta

I’m feeling better overall.  I have felt nearly normal for the last 4 days or so except for the way I feel for about 1 to 2 hours after I wake up in the morning with a cortisol spike. 


There is a symptom that has returned.  I am having POTS again — I feel dizzy and my vision blacks out when I stand up.  This is a blood pressure issue.  I know it will go away eventually.  I was free of it for a few months recently.
 

My sleep is still not normal. Almost every day I wake up at about 5 or 5:30 feeling scared.  Then, I start to get overheated.  I usually have to kick off the covers until I cool down.  After that, I get quite cold, and have to bundle back up.  It is a while before I feel warm again.  This is a pattern I have observed for many months, probably years, and I think it has to do with cortisol awakenings perhaps.  Maybe it is caused by menopause coupled with cortisol awakenings.  
 

I am getting about 6 or 6 1/2 hours of sleep per night.  I used to go to bed at 8:30 or 9.  Now that we do not get up to go to the school, we are going to bed at around 9:30 or 10.  This is much better because my daughter is tired at that time.  Putting her to bed before she was ready was always very stressful for me.  I would be so tired, and ready to fall asleep, but my system would bevactivated by her anxiety over going to bed.  I would be awake for an extra hour because of that.  Additionally, she is getting more exercise than she did when school was in session.  That helps, too.
 

I’m not getting more rest, but bedtime is less stressful.  I am still waking between 12:30 and 2:30, and staying awake for about 1/2 an hour, at least.  Sometimes it is an hour or an hour and 1/2.  Once in a while I am up until 5:00 or 5:30, and then I can fall asleep again until 8:30 or 9 am.

 

Over the few days, my days have been good.  The pain I was having during my last post subsided.  Emotionally, I’m having a break from the inner turmoil of anxiety that is characteristic of a wave.  In short, this is a window.  It’s nice.

 

I quit jogging after the increase in anxiety.  I may try it again and see if the anxiety comes back.  I walk every day.

 

Yesterday was our last official day of school.  The school is giving up (a week early) on what paltry effort they were making.  All the teacher did was provide us with assignments.  There was no teaching.  We had about 1 to 1 1/2  hours of Zoom per WEEK.  One math assignment the child had done was reviewed over zoom for the entire week.  That was all.  The parents were doing the teaching (or not), and it was very stressful because there was no guidance — not even an email explaining what the point was for each lesson.  
 

It is both a relief and an irritation that our school is done.  The private schools were and are making a strong effort, of course, in order to keep their “subscribers” for next year, but having the kids at home isn’t working well for most people.  I think that, over time, we could get into a routine, and it would get better.  If it takes 8 weeks to settle into a routine, we have made it, and yet now there is no more “school.” C’est la vie, no?

 

I’m very grateful that this whole mess did not happen a year ago when I was still so very sick.  This has been better as a result.  
 

That’s all I can write.  I’m sorry that I can’t answer any questions today.  I can feel the muscles in my jaw tighten.  I would like to have a good day today without pain.

 

 

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FarmGirlWorks

Hey @Rosetta, good to hear that you're feeling better right now. And OMG: yes, it is so awesome that all this School From Home happened this year not the last two. Dear lord, I am so grateful for you.

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