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

[Rabe]

Hi Rosetta...I am wondering if your daughter was sad about having to go to school after doing so many things over the weekend? The 3 hour math project sounded like fun with all the amenities.  There were many days when my kids at that age and beyond, given the choice, would not have gone to school cause they had better things to do.  And that your husband sees this as a different wave is such a good thing.

Im sorry the symptoms and feelings are so intense again....makes it so easy to beat on ourselves.  I hope you can give yourself some of the love, compassion, time, and understanding you give unconditionally every single day to others when it is so challenging physically, mentally, and emotionally...something others can't possibly grasp not having experienced it themselves.  THAT is a 

gift you give every single day....and no tree shines brighter than that!   But I understand what you are saying with your daughter....it is hard...maybe a tree that you make together as an at home art project with all those sparkly things...and hang somewhere.  Thinking about you Rosetta!  Love and hugs!!!💜

 

 

[Carmie]

Hi Rosetta, 

 

I’m so sorry that you continue to struggle so much, I wish I could take your pain away. You have a lot of people on here that are concerned and care about you. It’s good to have this community of people who really understand what each and every one of us is going through. Unless someone has gone through this they have no idea whatsoever . It’s something you can’t even explain in words. 

 

I am so extremely sorry you have akathisia. It really is the hardest symptom of all of them. I hope that it settles for you soon. My body is vibrating at the moment, we get the weirdest symptoms.

 

Sending lots of hugs your way🤗🤗🤗

[Rosetta]

Thank you, Carmie.  That's very kind.  I'm hanging in.

 

Nights are hard.  Mornings are very hard right now.  I'm crying again this morning.  Maybe I have a virus.

 

When I get into bed I feel jittery. There is an RLS feeling.  I'm wondering if the magnesium is causing it.  That really worries me because I had thought that taking the magnesium helps with anxiety.  I take it right before bed.  Could it be that my nights are so hard because I take magnesium at bedtime?  Moderators?  I have been thinking lately that I have worse waves if I forget the magnesium for a couple of days.  But maybe I'm taking too much right before bed. 

 

My emotions were less intense in the middle of the night last night except after the second cortisol wake up.  Then, I felt some SI.  I'm still having fewer cortisol spikes in the dead of night, but at least two.  Last night, after the first spike, I was lying awake with a very active brain.  I was not as worried about terrible things as before - the scary intrusive thoughts are not there as often -- rather my mind is going over the same ground and getting no where.  How to do the art project on Friday?  It's clearly a malfunction.  I'm not satisfied with anything.  This reminds me of when I was working years ago, and I couldn't work out how to analyze a problem. The second spike caused me to feel so so down -- so beaten down by this syndrome.

 

I awoke with a cortisol spike, and then my daughter didn't want to get up, cried and wanted to go back to bed.  It was very hard to get her out the door.  I'm frazzled. So, this morning, I'm in tears again.  My husband is sick and exhausted, and so things are not being done here at home.  The chaos is very hard to live through.  I feel awful that I don't do more about it.  He has to take his mom to the doctor today.  I'm stressed about him being in traffic.  I always fear he will not come back.  

 

I guess this wave is lasting for a while.  Every evening I hope that it's over, but in the morning I'm back to this horrible anxiety again.  Yesterday afternoon I felt fine.  I got up in the morning and ate.  Then I went for a very long walk yesterday -- twice as long as my usual walk.  I did the lake walk with my husband once and then again with my friend.  After I picked up my daughter at 2:15, we went to the library, and then we went to the beach to see the big storm waves.  We had dinner and then went to the craft store to try to find stuff for Friday's art class.  I had no luck.  

 

I'm so tired of this.

[Aquarius]

Hi Rosetta 

Feeling for you this withdrawal is so cruel it does affect the whole family my husband is very supportive but i can see that it is getting to him its not so much the severity of the systems but the length of time it takes im now called jeckyll amd hyde and he asks which one am i you are obviously concerned about your husband and daughter which is probably adding more stress to an already stressed nervous system the hardest thing to deal with is that it feels like forever and unrelenting but there will be a time that we will look back and realise it wasnt . I actually had a good evening and woke up calm after a bath of epsom salts lavender and baking soda have been fine most of day then came the tiredness ear ringing and neck tension and head pressure as i said its so cruel 

Sending my love we can do this 💚

[Rosetta]

Thank you, Aquarius.

 

I didn't get my walk in today.  I have not stopped feeling jittery and wired yet.  It's 6:15 pm.  I'm really wishing I had walked. 

 

I finally decided that the art project (pop up cards with evergreen trees and snow drifts) will be replaced by something more simple.  I can't do this one right now.  My brain can't handle it.  I made 3 pop up cards today, and not one of them felt like something I could teach in my condition.  With extra preparation to eliminate several steps I might be able to do it, but I can't have this on my mind for another night.  I bought some some extra things as an alternative.  I'm not disappointed.  I'm relieved.  Being able to let go of something that I intended to do has not been easy for me these past few years.  So, on a positive note, that's a welcome change.

 

I'm going to skip the mag dose this evening.  I'm nervous that that will make things worse, not better.  I'm also going to skip the electrolyte water that I sometimes drink.  I'll have milk instead.

 

[Carmie]

Hi Rosetta, 

 

I’m so sorry you’re feeling so wired at the moment.

 

I’d love to know how you go with the skipped mag dose tonight. If you’re nervous about it why don’t you just lower the dose? Everything in withdrawals is trial and error. A lot of people benefit from magnesium but some can’t tolerate it and get symptoms like dizziness, heart palpitations, tingly skin, agitation, trouble sleeping etc. The majority of the time though it’s because they are taking too high a dose. 

 

If you do decide to skip it I’d love to know how you go. You can always add it again, if you choose to omit it for now, but really slowly and low doses to start with. Our bodies are all so different, and they change all the time too. What works one minute doesn’t work the next. Frustrating I know. 

 

This journey certainly is tiring, like you said. It sometimes feels like it will never end, even though that’s not what the evidence shows. 

 

Sending sunshine your way☀️☀️☀️

Edited December 20, 2018 by Carmie
Autocorrect 🙄

[Rabe]

I just wanted you to now that I am sorry this wave is still hitting you Rosetta...you are so strong to yet keep going and doing.  I dont know how you do it and can see why you get so so depleted and the tears and anxiety flow out..and then the fears.  I wish I could give you a big hug...I hug you in my heart for all you are and all you bear.💜

Does your daughter express any concerns about going to school?  Just wondering...that happened with one of mine once...did not want to go to school over and over and there were some feelings attached.  

Im grateful that you felt a bit better yesterday afternoon and could get out.  That does seem to help at the time but I find I often then overdo and find it affects me.  Take care of you Rosetta.  It is hard when both of you are sick and exhausted.... can understand your feeling beaten down.  Blessings and hugs...and hopes for a better tomorrow.  💜

[Rosetta]

Thanks Rabe and Carmie.  Last night WAS better!  I didn't have the cortisol spikes!  I don't believe I had even one!  I woke up a couple of times and went back to sleep without much trouble.  In the morning, I felt better, too.  This could be because the wave is ending, but the night was a LOT better.  I guess the only way to know if the magnesium was causing problems is to try to go without it.  Yes, Carmie, I csn take less when I try to add it back in.  Right now, I'm going to try to get some rest for a few nights and see if the cortisol wake ups in the middle of the night stop.  

 

I had a good morning.  My daughter was late to school, but I didn't get upset.  We couldn't get moving this morning very quickly, but I didn't feel stressed about it.  I tidied up the yard a bit while waiting to go to the school for a Christmas party at 10:00.  That's a big deal, too.  I haven't been able to do that for a long time.  Volunteering at the school was easy for me.  Then I stayed for lunch with my daughter.  I picked her up an hour later, and she had lost a toy.  She cried, but I didn't feel stressed.   I took her to gymnastics by myself.. I don't think I have ever done that before.  It's a 45 minute drive each way.  I was calm the whole time.

 

When I got home I prepared for art tomorrow.  I'm having a hard time believing that I just had a day without anxiety, but maybe??

[wantrelief]

I am so happy you had such a good day, Rosetta.....yay!!  

[Carmie]

Wow Rosetta, 

 

So glad you had a good day where you were feeling better. It made me smile. Just goes to show that you’re healing, even if it’s ever so slow. 

 

Hope you have lots more good days💚

[Aquarius]

So happy for you it sounds like a great day long may it continue...i am having a good morning too its as if the clouds are breaking up and a ray of sunshine is poking through....i bought magnesium and took it a few times only 75mg but i found it made my head worse so i dont take anything now except for blood pressure medication wishing you further healing 

[Rosetta]

So . . . I skipped the magnesium Thursday and Friday night, too, and I slept pretty well.  Today is Saturday.  I still had cortisol awakenings both nights that were very mild, but only about one per night.  Friday was a good day.  I was up in the night for about an hour or so, but it wasn't too bad.  Last night, I didn't lie awake or get up (except to use the restroom twice) at all.  I was able to fall asleep again quite easily, and I was not even at home.  I slept a bit late, too.  Until about 7:30.  

 

So, the wave has passed.  It went from Friday to Wednesday, I believe.  The Thursday before that Friday was good in the evening and before that I had a few days of wave.

 

The art class went well yesterday, and after school we packed up and went to my MIL's for the night.  Feeling normal for a couple of days in a row is amazing.  Especially after how awful I felt for days and days.

 

All your sweet notes were so touching @Hibari @Aquarius @Rabe @Carmie @wantrelief @jozeff @Sheera  Thank you very much.  

[Rabe]

SO happy to hear about art class and staying at your MILs Rosetta...and the 2 days in a row.  You are continuing to heal...and it is lovely to watch...and gives hope to us all!! Hugs and love!💜

[Aquarius]

So pleased for you rosetta you are healing .....i noticed in your threads you mention akathisa im not sure how it affects you but yesterday and this morning i am so jittery and feeling of being scared as if i dont kmow whats happening like on the verge of a panic attack but dont know what to do with myself keep wanting to pace is this how you feel 

[Rosetta]

Thanks, Aquarius.  That sounds like aka to me, but it could be severe anxiety, too.  I believe that Akathisia can be mild or severe and everything in between.  I'm not sure where the line is between severe anxiety and aka.  If I feel a "sort of/not really, but I have no other word to describe the feeling -- electrical sensation" in my muscles while I'm feeling a lot of turmoil in my mind -- usually fear and confusion and SI -- I consider that aka.  Pacing is a response to it, I think, and not a symptom.  Not every one feels the need to pace, but walking helps either way.  If I hunker down on the couch in response I don't feel better although that is my response to aka.  If I go for a walk, get some sun, and am distracted by birds, clouds, waves or anything in nature I feel better at least temporarily.  For some people the thought is that if you don't feel SI then it's not aka.  There doesn't seem to be any agreed upon definition of aka.  Because there are no words that describe it very well to people who have never experienced it I think it's difficult for there to be agreement.  As I've become more used to it I often notice "aka-like" feelings but don't have SI.  I'm not sure it matters whether one has aka or simply feels something close to it because the advice is the same as for all WD related symptoms.

[Rosetta]

Journal:

 

Slept ok again.  I was awake for a while, but it wasn't miserable.  Yesterday was ok.  I went Christmas shopping with my daughter.  It was fine except that I got upset in traffic when I made a mistake and people kept honking at me.  So, I went into a store to wander around and calm down.  By the time I left, I felt OK.  Drove back on surface streets.  I stayed up too late, and I felt pretty agitated by the time I went to bed.  

 

I hope avoiding the magnesium before bed is the reason I'm sleeping better.  We will see.  

[Aquarius]

Good for you so pleased you are having better days maybe it is the magnesium i tried it but it made my head funny and was more unsettled hope your days continue to shine 

[neroli]

Hello Rosetta

 

Thank you for the xmas greetings - I hope yours goes well, too.

 

Seems like you've had a couple of window breaks and that maybe you're finding out if the magnesium is affecting your sleep.  I hope things get better on that front.

 

Yes, I've got some time to rest.  I've just been for a 35 min walk around my neighbourhood and I'm stuffed now, such achy legs.  I don't think they are getting any better but of course time will tell.

 

Glad to hear you've had some good patches, long may they continue.  

 

The warmest of wishes to you.  You were the first person to write to me on this site and I thank you for your kind words and support.

 

Neroli 💜

[Rabe]

Wouldn't that be so so nice Rosetta...if the magnesium was the cause.  A drug you can just stop...easy fix!  YAY!!  And so nice to have this right at the holidays!   Thinking about you and your family this holiday and wishing you the best!  💜 

 

[jozeff]

Hi Rosetta,

 

You survived the Christmas shopping! Way to go! Busy crowds, shops and traffic always make me nervous and agitated so that's perfectly normal,😉

 

Sho are you ready and prepared for Christmas now. I hope you have some relaxed days. I mean, these days are supposed to be enjoyable right?

 

I hope cutting the magnesium will improve your sleep.i take quite a lot of magnesium supplements but I never linked it to sleeping.

 

Have some nice days with your daughter and family!!

 

 

Cheers

 

Jozeff

 

 

 

 

[Rosetta]

I have slept much better since I stopped taking magnesium.  The last few days have been much better.  Yesterday, I made a pie all by myself.  I've been busy, of course.  That has helped.  We have been away from home since Friday, the 21st.  I woke up this morning anxious.  It wore off quickly.  Today has been fine.  My daughter is at camp, and I'm doing all right.  Today, we are going back home.

[Sheera]

Rosetta-I’m hoping that you continue to get better sleep. It makes such a huge difference doesn’t it?  Congrats on the shopping excursion!!  ❤️

 

Sheera

[neroli]

9 hours ago, Rosetta said:

have slept much better since I stopped taking magnesium.  The last few days have been much better.  Yesterday, I made a pie all by myself.  I've been busy, of course.  That has helped.  We have been away from home since Friday, the 21st.  I woke up this morning anxious.  It wore off quickly.  Today has been fine.  My daughter is at camp, and I'm doing all right.

Hello Rosetta

 

This is great to hear.  How lovely to have some relief.

 

hugs

 

Neroli 💜

[Aquarius]

Brilliant news so pleased for you it makes such a difference when you sleep better long may it continue 

[Carmie]

Hi Rosetta, 

 

That’s wonderful you’re having some good days and better sleep. Who would have thought getting rid of the magnesium ended up making your sleep better. Our bodies are strange, aren’t they? 

 

I havent tried magnesium or fish oil as yet. I probably will one day though.

 

Hope you enjoyed your pie🥧

 

Sending sunshine your way☀️☀️☀️

[Rabe]

SO happy you had a lovely holiday Rosetta..hope the sleep continues!💜

[Rosetta]

Yesterday (Thursday) --We had stayed an extra night at my MILs.). Anxiety started very in the morning, but it didn't prevent me from doing anything I needed to do.  It wore off at some point fairly early -- before I was on the way to take my daughter to camp.  

 

Tues and Wed nights, I was awake for a while in the night worrying.  Wed and Thursday, I had diarrhea in the daytime.  I've had no magnesium for at least a week.  So, there was some other cause.  Hormones probably.

 

I had forgotten to mention that I had dystonia Saturday evening until I fell asleep that night.  It was in my foot and leg.  It was quite annoying, but not very painful.  It's been very, very slight since then and only when I read, but not every time.

 

Last night, I slept at home.  It was very broken sleep.  I kept waking up for various reasons.  I'm going to turn the heat off tonight as every time it kicks on, I wake up.  At one point, I woke up and worried for a bit.  

 

This morning, I became completely overwhelmed and cried very hard for a while.  I was trying to get ready to take my daughter to camp.  I had washed her hair and it was a nightmare to comb out despite conditioner.  Once I had her ready, I broke down while trying to find clean clothes to wear.  Being in this house is so very overwhelming for me.  

[Rosetta]

@Sheera @neroli @Carmie @Aquarius @Rabe  Thank you all for stopping by.

[Aquarius]

Sorry to hear that i quite often find im better away then when i return i feel the same as you its kind of a reminder when you come home as if this is where the bad stuff happens i feel personally for me i need to apply a bit of cbt on the house 😊 i need to write down all my feelings when i come home and then break it down as to what overwhelms me then try and problem solve ...i think when you challenge your thoughts they are not so scary ....sorry i know itd easier said than done 

[Rabe]

 

I just wanted to say how much I think about you Rosetta and how constantly in awe I am of your ability to share you feelings and knowledge, to keep going in spite of all you have and do deal with. 

I feel you have come so so far....even what you posted sounds so improved from just a while ago.  I feel you are such a blessing Rosetta and I wanted you to know.  💜

[Rosetta]

Thanks, @Aquarius.  Good idea to write it down.

 

@Rabe, you are always making me feel better.  Thank you.  It's definitely improved a lot and yet when I'm overwhelmed and crying about it the despair is so intense.  Afterward, I can appreciate that it's not as intense as it once was.  During the intense emotions that's hard to see.

 

Journal:

Slept better last night.  Woke up and worried in the dark for a bit about the mess in my house.  Worried about the future, my safety, etc.  Self talk helped a little.  It's as if I have a wave in the night that's almost nothing but fear.  Fell asleep again.   Had a cortisol increase (but no spike) at the expected time -- about 5:00, and could not sleep past 7:15 or so due to anxiety.  The anxiety lessened pretty early.  Went to the park about 1:30, and got some sunshine, but no walk.  Not a bad day.

 

No dystonia, no tinnitus, no headache or pain, no nausea -- almost no physical symptoms lately.

[Rabe]

WOW Rosetta!!  I am SO happy for you to be able to say that!  Really really happy.  💜💜

[Rosetta]

Today is Sunday.  Last night, I felt very agitated before bed with a restless legs component.  I had stayed up too late.  It was about 8:30 or 9.  I'm off my schedule of bed by 7:30, and falling asleep by 8:30.  So, I took half a Unisom.  My daughter was much easier to get to bed than I expected.  I read to her for a while.  I slept well.  I woke up several times, but I didn't lie there worrying for periods of time.  I worried and then fell asleep.  Probably because of the Unisom.  I've been feeling anxious since first light.  I didn't get up until about 8:30 am.  I kept trying to go back to sleep and succeeding, but waking up anxious again.

 

My anxious thoughts this morning were about missing out on life and on getting a family picture.  My daughter is 7, and we have never done that.  It makes me sad, but I don't know if I can do it soon.  I wish we had done it every year, but I can't go back.  We might have one photo of the three of us together.  This illness has taken so much time and energy and well, life, from us.

 

The trauma caused by this syndrome:. I feel traumatized by all that has happened the last few years, and I know my husbamd does, too.  I try to remember that we have been very, very lucky.  Nothing truly awful has happened, but it's been a real nightmare for both of us.  He was very afraid I would act on my SI only a year ago or less, and I'm quite affected by the fact I was terrified of doing so myself.  Not to mention the fear that comes and goes over and over.  I was lying in bed this morning saying to myself, "Nothing is going to hurt you," as my intrusive thought kept coming back telling me that I'm dying.  I know I'm not.  Everything is fine.  I'm alive, I'm safe, my family is safe.  

 

I keep thinking that if I could get my clutter resolved we could start living again without the fear and anxiety.  We could have people over and make some friends.  I want that so badly.  I'm pretty sure having people over is going to be hard no matter what.  It's going to take much work to get to that point.  The fear and anxiety isn't going to stop just because I resolved the clutter, but it would help a lot.  Yet I sit on the couch and try to distract myself instead.  My daughter resists my attempts to get rid of things, of course.  I know my husband is impatient to get started.  Both make me feel enormous pressure.  I want to hide instead.  Slowly. I feel myself regaining my ability to purge and organize.  It's coming back, but not fast enough for me.  That alone is a really good sign -- the fact that I WANT something!   I'm not just surviving.  I want something.

 

One thing I really want is to wake up to house that doesn't make me feel overwhelmed, anxious, and stressed.  I know that would help me heal faster.  How to get that I just don't know.  Maybe I'm going to have to push through and risk some meltdowns.  I don't want my daughter to experience the meltdowns, and they often happen when I'm trying to do something for her.  So, the impact of them on her worries me so much.  I'm just not sure which is worse . . . 

[Ather]

You keep on going everything's going to get better and better with time, please do have a walk regularly.

[Sheera]

Rosetta—I feel your cluttered pain. It has been only in the past 3-6 months where I have been able to get my house organized and I will say it has helped me. However—I don’t think I could’ve done it any earlier. It’s funny how our minds know when we’re ready to conquer that giant pile. I have done the organizing and purging very slowly. I stopped making lists of things that needed to be done—the lists!!!  I hope you don’t have lists—they just make it worse. I wish I had known this earlier.  

 

It is quite a step step forward to know that you want to clean up. Remember this is not you being irresponsible—this is your brain not knowing how to act on something it wants. It eventually will be able to do this and then you will be surprised at how motivated you are and it will bring you so much joy. Just as you have physically healed, the other parts of your brain will heal and you WILL get an organized and clean house. It’s okay to tell yourself—I’m doing the best I can right now. This is hard and you are strong. 

 

Your daughter is going to be okay. You are exactly what she needs right now—you love her to the moon. 

 

Hugs—Sheera 

[Rosetta]

Thanks @Sheera  Sheera, thanks for your perspective.  I sense that what you say is true.  I have sensed that for a while now.  At some point my brain will sort itself out.

 

I really want to dump everything into bins until then and get it out of my sight.  I bought bins a while ago, but my husband didn't want to bring them in the house.  So, they got wet and dirty.  Now, when I have the urge to use them the extra step of having to clean them deters me.  Today, I'm trying to get some laundry done and maybe clean one of the bins.  I filled the tub for that, but getting the bins apart didn't work last time.  They are stuck together now.  I'm not strong enough.  This is how it goes.  One thing leads to another.  I wish I had insisted that they come inside the day we bought them. I can't fight the entropy.  My husband puts up with so much that when he says he needs something to be a certain way, I let him have it even if I know it's going to end up like this.  He says he will clean them for me, but never gets the chance. 

 

I need a shower.  I need clean pants after the shower.  I need so many steps before I can take the next step.  This is why I stay home and do nothing.  The guilt and shame of being so useless is tough to confront.  

 

Thank you, Ather. Your short little note is so encouraging!  Yes, a walk is an excellent idea.