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

[bubbles]

4 hours ago, Rosetta said:

Hi @bubbles Botox.  I have thought about that.  It scares me, but to not wake up feeling physical distress.  That would be so nice.  I wake in the night with my tongue pressed very hard against my palate. It seems that if I’m having physical issues when I wake in the night I’m not having emotional issues, and vice versa.  Once in a while, I have neither for one day or maybe two if I’m lucky.
 

It doesn’t seem to matter whether I exercised or not.  I think I need to lift weights or do resistance work on the chest and back.  For my jaw, I doubt there’s anything I could do.  Tonight, my right foot is cramping.  My toes, arch.  No headache.  That’s a huge plus.  

 

I’m glad you have seen such improvement, Bubbles.  

 

My physical therapist spent six months talking me into it, so I know what you mean! The clenching was causing a lot of pain and damage though, so it was the only thing left to try. The dentist tells me it's only for extreme cases. :( Oh well, it did help.

[Rosetta]

@bubbles  Thanks for the suggestion.  Everything is improving for me, slowly but surely.  Bruxism, too.  I think menopause is a big part of why WD is lasting so long for me.  The hormones induce waves perhaps.  I think I will keep the idea of Botox in reserve, just in case, but I’m afraid that any drug could cause me to have akathisia again.  That is a terrifying thought.  If I do have aka now it’s pretty mild compared to before.  I think that when I have aka in my arms and legs that reminds me of having it in my “brain,” and that is a big part of the experience of aka now — a Pavlovian sort of reaction.  Sometimes, it affects my actions, but so infrequently compared to before.  When I go into a deeper, longer wave, I have the stronger mental effects of aka. Fortunately, the worst part of aka, SI, almost never happens any longer, and if it does, I know it won’t last long (even if it comes back the next day).  
 

It’s very kind of you to share that botox helped you.  I should check your thread soon.  I hope you are doing well.  You were on a high dose of sertraline, too, I see.  Awful drug.  It’s super cool that you are at such a low dose!  

[bubbles]

I'm doing well. Glad to hear things are improving for you too. 

[Sheera]

@RosettaI want you to know that your healing is always in the back of my mind. ❤️❤️ Slow and steady wins the race, warrior friend. 
 

Sheera

[Rosetta]

Thanks, @Sheera.  Thank you, @bubbles.

 

I forgot to note that something physical has changed, and it’s a big deal.  Last Fall, in August, I tried to wear contact lenses again.  I had given up on them because I was too sick to deal with them.  I wanted to wear them in Spain.  When I tried the new pair, they made me so dizzy that I couldn’t use them.  I tried again just a couple of weeks ago, and the same pair worked out fine!!! Yesterday, I was able to wear them while driving!!  This is a very important  improvement to my life.  I see so much better with contact lenses.  Plus, this means that my brain or body — the connection between them — has changed.  Wow.  Just wow.

[Gridley]

20 minutes ago, Rosetta said:

Wow.

Wow is right.  That is great and a real sign of healing.

[direstraits]

happy for you, @Rosetta !

keep healing!

xx

[wantrelief]

So happy to read this, Rosetta....what a wonderful sign of healing! 

[Rosetta]

Thanks, everyone!  Insomnia tonight.  I’ve been awake for hours.  It’s 5:17 am.  No cortisol wake up.  For that I’m grateful.  Dystonia is returning.  My toes, arch of my foot, front of my calf, hip, neck and jaw.  It’s not painful; it’s more of a sensation. Annoying.

[Rosetta]

Bad jaw clenching for two nights.  Waking up in pain that doesn’t go away.  The muscle tension remains.  It’s now 11:49 am.  I’m thinking Epsom salt bath.  Wish I had some right now. I lost control

of my hands earlier today and spilled soup all over the floor.

[ShiningLight]

Rosetta,

 

So sorry to hear about the jaw clenching. I just finished a 3 day headache from that, it was awful. Very hard when the jaw clenching happens in your sleep, how the heck are you supposed to prevent that?! My dentist is making me a new nightguard but that only saves my teeth (to the extent possible), it doesn't stop it.

 

I hope you're doing a little better today.

[Elyssa143]

@Rosetta

so sorry to hear of the dystonia returning. Do you take magnesium or spray magnesium? Not sure if it helps but those symptoms sound similar to needing magnesium. I’m 30 months now, I had 5 really good days not healed of course. But much better and of course now back down, the inner akasthia is horrific. And the si and intrusive si is so hard it makes me feel alone especially being this far out with this stuff that I see so many people get rid of early off.  quite discouraging to still have the suicidal stuff. I do hope all in all your improving! Hugs to you

[Rosetta]

Today, I am much better.  Still achey.  I pulled some muscles in my neck and back during the clenching yesterday morning.  I woke up with a crick in my neck.  Reduced range of movement without pain — all that. So frustrating.  
 

Yes, @Elyssa143, it is very discouraging to have severe symptoms for so long.  I’m sorry you are one of us.  This is a marathon for some of us and not others.  It’s very hard to avoid feeling jealous, I’ll admit.  I’m happy for those who have a short recovery because ADWD can be life threatening.  I wish I had been lucky.  However, I was luckier than many who didn’t have the support I had, and some who never discovered SA.  The SI will eventually go.  It did for me.  It’s strange to live without it after decades of having it come back over and over again.  
 

@ShiningLight I’m glad you are getting a break.  What a crazy thing it is that medicine harmed us all so much.

 

@wantrelief @Gridley @direstraits I seem to be come back up for air again.  Thanks for your comments earlier.  Knowing you are out there is such a comfort to me.

[bubbles]

So sorry to hear that the clenching is so bad. We can inflict a lot of pressure when we do that.

[Elyssa143]

@Rosetta

thank you so much, it’s exhausting all of it. I know your exhausted too!  Did you have the inner akasthia? I’m so glad to hear the si goes!!! This is awful and the inner aka has been awful for me lately, I also still have the intrusive si, exactly like you explained in in your response to me I am so glad to hear that goes and yes it will be so strange to live with out it as well. Look forward to hearing back hope your doing a bit better I will be much relieved when my brain doesn’t go to suicide for every uptick in symptoms. Hugs to you

[Rosetta]

@Erell I replied in your thread, dear.  I hope you are feeling better soon.

 

I’m hanging in there.  There has been some increased anxiety lately.  Trying to make my daughter do her school work is very frustrating.  My anxiety doesn’t help her much, as you can imagine.  She’s lonely.  I’m tired, and I’m not sleeping well.
 

My symptoms are yo-yo-ing again.  From day to day there are changes.  The swings are not as wide as they used to be, but it’s not easy.  I’m so tired.  One thing I’m grateful for is that no one can come inside my house.  I used to have weekly panic attacks because the cleaning lady was coming.  Now, my house is dirty, but I don’t feel invaded.  I wish I had the energy to clean.  
 

I’m so worn out by the arguments over school work that I have no energy for anything else.  I’m very depressed by how my relationship with my daughter is going.  She’s stressed out, too.  There is a lot of work for 4th grade, and just managing it all is hard.  She is seeing school work as a negative thing.  It’s not fun very often, and I don’t have the energy to make it fun.

[Mimi79]

Hi dear Rosetta,

I’m sorry to see you are struggling a bit these days. Homeschooling is not an easy task, we are not teachers, we are parents!. I think it’s normal that your anxiety is higher because of that. It would be the same for me.
 

Luckily, here the schools have re opened  and I’m so glad that my girls are back to their school, with their friends. They are so happy to be back in a more «normal » routine. I just hope that the schools won’t close again. I hate homeschooling, I don’t have the patience and the energy.

 

I hope you are able to find some time to take care of yourself and relax. And some happy time with your daughter. 
 

Take care of you!

 

Anne-Marie

[Rosetta]

I take it for granted much of the time, but every so often I think, “This is so amazing.  I can live through all sorts of days, and moments, that used to take me so low, and there is no SI.”  It’s an absurd thought, no?  How many people go through life never thinking that thought?  
 

I’m in a wave that is not too deep.  I’m having dystonia again, tremors in my hands, insomnia, lack of appetite — those sorts of things.  There is some anxiety mixed with anhedonia.  It’s all very mild compared to what happened before.  My husband says I have been anxious for about three weeks.  
 

I’m making a Halloween costume for my daughter.  It’s going well.  I can tell how much I have healed from how I deal with Halloween this year compared to last year.  Last year, we were In Europe, moving from one apartment to another on the same day we had a Halloween party in a park.  It was very stressful.  This year, we are at home.  There are no parties, of course.  The kids can wear their costumes to school on Friday.  We will go trick or treating — very carefully.

 

My daughter has been back in school for just over a week.  She has class Tues through Friday from 11:45 am to 2:45 pm.  That is all.  It’s not enough schooling, but it has been good to have a break from having her doing only virtual school.  It’s better for our relationship this way.  One thing that is fantastic — I do not have to get her off to school in the morning.  I can wait until the morning anxiety has worn off or at least lessened before I have to pester her to get ready.  This is amazing!!!!
 

It’s very odd to have anxiety and anhedonia at the same time.  Sometimes, I’m anxious, but I don’t care?  Is it that I know the anxiety means nothing?  Is this a taste of what being “normal” feels like?  Is it simply a lower level of anxiety, and I’m not used to that?  

Oh, thank you, @Mimi79!

 

 

[Mimi79]

Hi @Rosetta,

I’m so happy to read you! You seems peaceful!

Indeed, passing through the hell of withdrawal helps us to see life with new eyes. 
 

You were very courageous to travel in Europe in the midst of WD. Not sure I would have been able to do that. It was my gift for my 40th birthday,  I was suppose to go to Paris in May, and I’m happy that Covid19 forced me to cancel. I wouldn’t have had a good time with all my symptoms. At the time I was suppose to be in Europe, I was in one of the worse wave ever.

 

I’m so happy for you that your daughter is back to school. It is so important for our kids to socialize with others. School is important for their learning, but for their psychological development too. This is in school that we learn how to interact with others, that we learn how to live in society. This is why here, our gouvernement really try to keep schools opened. 
 

I’ve just started my taper and I’m a little bit anxious about it. Every time a symptom appears, I’m wondering if it is link to that. I can’t wait to reach the point where you are! I can’t believe I will be in this WD thing for at least 4-5 years. It is so frustrating...

 

So, I wish you a great Halloween with your daughter. I will give candy me too, with an original set up to stay at a distance of 2 meters from the kids. Don’t know if my daughters will go « trick or treating ». My older girl don’t want too much, she think she’s too old for that. Anyway, it will bring some joy in this boring « Covid19 » time.

 

Have a great weekend and I send you big hugs from Montreal.

 

Anne-Marie
 

 

[Erell]

Glad to read that you're seeing some progress in your ability to manage daily events.

It really sounds like healing ☀️

 

And wow, really you travelled to Europe in the midst of WD ! What a strong woman you are !

 

Sending hugs ❤

[Amira]

Deat @Rosetta may i ask you, did you have lack of emotions like you are unable to feel any positive emotions only negative ones? Did you have the feeling of wanting to die and life not worth it? Did you have inner akath. And feeling of dread/fear/depression? If yes, did they go away? I am now 2 years off AD and struggling with these symptoms and i am scared that it will never go away as i am having them this far out. Your input will be appreciated. Thanks

[Rosetta]

@Amira123 Oh, yes, all of that!  It all slowly lessened over time.  There were windows when I felt relief from those symptoms.  Then, they would come back and go away again.  At times, I had bad waves when the symptoms were very strong instead of being weaker than during the most recent wave.  After the bad wave, there would be another back and forth with a lessening of intensity each time a new wave began.

 

At two years off I was still suffering a lot.  I worried for so long that I would not get better.  It wasn’t true.  Healing takes a very long time for some people, and not others.  You will heal.  It’s absurd that at 2 years you are still struggling, I know, but, based on my experience, the fact that you are still sick means nothing.  You will get over all those awful symptoms, you will have positive emotions again, the dread will disappear — all of it will stop, and you will return to normal.

 

Rosetta

[Amira]

Thank you so much for your words of encouragment!❤️ @Rosetta

[Rosetta]

I’m doing all right.  I don’t have much energy.  I’m spending what I do have on my daughter which can be good most of the time - if I’m not irritable.  
 

I’ve had some dystonia off and on.  Nothing too difficult, and it goes away in a few hours.  A few nights, I had insomnia.  Again, not too bad.  It went away in a few hours.  It wasn’t all night.

 

Essentially, all the bad is less bad, and the good is better, but I’m not feeling great.  

I’m really, really glad that I’m not feeling terrible anymore!  I guess I’m feeling more patient about the fact that this is still going on.  I definitely have moments of being angry and frustrated that this continues, but I’m so happy to have a couple weeks with no pain or meltdowns or really dark thoughts.  

[Rosetta]

Oh, except I forgot about about waking in the night in a panic.  Yep!  That just happened.  It’s been happening every night lately, and I worry about Covid until I can go back to sleep.  Sigh.  

[Elyssa143]

@Rosetta I know your still not great but I am so so so glad to read this update I’ve followed you since my beginning. I’m 32 months now, definitely better but still struggle. I look forward to the day I’m having way more good times than bad, the bad isn’t as bad, and no more aka or si. Hugs to you your healing! Things are better and it’s only up from here

[Rosetta]

Thanks @Elyssa143  You should have hope.  You need patience, too, but there are lot of reasons to be hopeful.
 

I’m struggling with the hormonal thing right now.  Physically and emotionally.  Pain in my gut.  Feeling really sad.  There are a lot of bad emotions I’m not having at least

[Rosetta]

I’m waking up scared every morning, and I have to remind myself that I’m safe at home, everything is just as stable as when I went to bed, etc. Thank goodness I have nothing important to do in the mornings.  Sometimes, the cortisol spike makes me feel sick to my stomach.  The spikes are not as intense as they have been in the past, but they are happening every day and sometimes multiple times per morning. Occasionally, they happen very early — around 2:00 — but not usually.  Generally the 12:30-2:30 wake up is not accompanied with a spike.
 

I’ve had some cramps in my calf lately, in the night, but none last night.  I’m irritable a couple of times a day.
 

I’m quite sad.  I’m old.  I feel that I became very old as a consequence of this syndrome.  I have no energy.  I don’t want to do anything.  I don’t want to cook.  My house is a wreck, but I don’t have the energy to fix it.  My husband gets anxious when I’m in a wave, and he complains about the house.  I keep telling myself I’ll just do a little bit of work every day.  Just baby steps.  Then, I don’t.  I know this will eventually stop, and I’ll be normal again.  For now, it’s as if I’m 80, and I simply can’t do anything.
 

 

[Sheera]

@Rosetta I’ve been thinking about you. It sounds as if you’re giving yourself grace during this wave. I hope you are-what you are doing is hard and like you said, you won’t feel like this forever. Waiting for it to pass is the hardest part but you’ve seen the light, it will return. ❤️
 

Sheera 

[Rosetta]

The last day or so has been better.  I felt less lethargic yesterday and today.  I rescued a lost dog, and that made me feel good especially, when I took him to his owner today.  He made me get up early this morning.  Maybe I missed a cortisol spike because of that, maybe not, but this morning was better.  Yesterday morning, I couldn’t eat breakfast because my stomach was upset due to a spike. Today, I’ve been feeling a tiny bit “maniac” compared to my usual dullness.

 

A memory I had when I was reading Erell’s thread:  Once one gets used to DP/DR, it is not as scary.  It’s always bizarre, but one loses some of the fear.  It’s just odd.  I used to feel as if there were a thick, plate-glass window between me and the world — the kind in enormous aquariums.  That happened when I looked at trees.  There was no magnification.  I could not pinpoint why I felt that way.  The world seemed two dimensional, but not quite.  It was impossible to adequately describe.  Maybe it had to do with sunlight?  Or shadows?  It was a “feeling” rather than a visual experience.  No more.  That never happens now.  It was so disconcerting.  Eventually, I realized that it could not hurt me; it did not mean I was insane.  It was harmless except for the fear it caused.

[Istm]

Hi Rosetta, I was reading through your thread and I’m glad you’ve been

 doing better the past days and yay! for rescuing the dog!  

 

I also struggle with really bad DR and I agree, if I obsess over it it gets way worse, but if I just accept it it gets easier to handle it. I’m so glad that’s getting better for you!

 

hope things are going well,

xx

[Rosetta]

Strong spikes every time I fall asleep.  It’s been happening since late afternoon when I got very sleepy for about an hour.  Now that I’m in bed, it keeps happening over and over — for the last 2 hours.  It’s making me feel deep guilt and despair; I feel sick to my stomach and anxious, too.

 

In about one month, it will be 4 years since I tried to find out how to get off antidepressants.  I found the Mayo Clinic’s information and followed what turned out to be a quite rapid taper that was supposedly the proper way.  I’m still paying for that.  In February, it will be 4 years since I stopped taking a sleep aid, the drug I was prescribed after I went into severe withdrawal due to discontinuing Zoloft (and Xanax  “as needed”) too abruptly.

I’m still determined to get well and provide a good life for my little girl.  I know this is a dip in the road, but at the moment, it feels like I’ve fallen into a huge sinkhole. 
 

I just took some Benadryl.  I’ll have a hangover tomorrow, but I felt I had to.

[sunnysideup69]

Sending you warm wishes @Rosetta- I sometimes read through your thread because you also did a cold switch, as I did (but not the same drugs.)

Anyway, I also empathise with the 'feeling old' about which you write. In waves, on bad days, I also feel this process has aged me......but then it passes again. 

xxx

[wantrelief]

Aw, Rosetta, I am so sorry you are going through the wringer at the moment with cortisol spikes.  You are so strong and I know you'll get to the other side of this.  Hang in there....better days are ahead.

[Rosetta]

@sunnysideup69 and @wantrelief Thanks you for dropping by.  It helps to have the support.

 

I’m after a cortisol spike (or whatever it is — menopause issue coupled with PAWS?) at 3:00.  Feeling fearful, etc.  I decided to get up and watch and TV to avoid another one, but my daughter woke up.  So, now I’m getting her back to sleep.

 

 

[Rosetta]

 

I’ve been having a lot of pain and discomfort from dystonia for the last few days.

 

Yes, it will get better.