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

[wantrelief]

Hi Rosetta - I am so happy you have noticed how much better things are getting.  Even symptoms you struggle with sound much less intense than they were before.  I have been thinking about you and am so pleased for the improvements you are experiencing!  💗WR.

[neroli]

Hello Rosetta

 

Thank you for visiting my thread and again leaving a kind message.

 

It is good to hear that you are seeing improvements in your symptoms - you have come through such a lot.

 

You will see the day when you are free of these effects from the iatrogenic injury and will be whole and healthy.

 

I still think it is amazing that you have managed, and are coping with, the transition to Spain.  Strong woman.

 

Go you!

 

Neroli 💜

[Rabe]

How long will you be there Rosetta?  I didnt know you were staying beyond September.  

Im so happy to read that you have some improvements amidst the symptoms.  I think about you so much!  Love and hugs my dear friend!!💜

Becky

[Giulietta]

Dear Rosetta,

 

Glad your days sound like they may be overall better - although you may feel more depressed at night. I am more the opposite. LIke you said it goes away.

 

When will you be coming back to the states?

 

Ovulation and days prior to menses are the worst - and even though they are past for me - they drove exacerbation in seizure activity. Fluctuations in hormones cause all sorts of complications. Did you hear if the expression that 'Women are God's joke on the universe'? A friend mentioned that to me years ago during a bad time and I still chuckle about it.

 

Your hair will come back. Mine has since after starting cymbalta. Funny - I asked every MD (including prescriber!) when it fell out in gobs in 2015 after starting cymbalta that they denied it. Of course all labs were within normal limitis.

 

I have been thinking of you - first chance to pop by. Remembering your support of me. 

 

Big hugs,

 

Giuilietta

[Rosetta]

@Rabe  Yes, we are here for several months.  The good thing is that I have Spanish classes, and that gives me something to do besides worry.  Some days are too much for me.  Today was one.  I stayed home, and I needed to be alone, but I couldn't be.  I only had about an hour and a half completely alone.  Sometimes weekends are hard, but now I have 4 hours of class every weekday.  So I feel I never get a day that has enough alone time.  This has been hard for my daughter.  She needs a lot of extra support.  At least she has no homework here!  I'm tired though.

 

@Guilietta  Thank you for dropping by.  I left you a note on your thread.

 

@wantrelief So nice to see your note.  Thanks.

 

@BB1979 Hi.  Good to hear from you.  I have no idea about percentages.  That concept doesn't lend itself to this nightmare in my opinion.  I'm much better, and I'm still deeply unhappy with how many problems I still have, how much I have lost to these drugs, etc.  I was so very, very sick, like you, and while I'm grateful to be so much better, my life is still very difficult.  I have a lot of pain sometimes, and I have aches most of the time.  The deep depression in the night is very hard.  I just had SI a couple of times this week in the night.  That's how deep it is.  Today I had a very, very anxious experience in the shower.  It was all from exhaustion and having a big mess that I felt completely overwhelmed.  I'm so tired.  I don't try to figure out how much I have healed or any of that because it upsets me.  I try to just take it day by day and week by week.  So, I can't think in terms of percentages.  

 

Yes, it's the hardest thing I have ever done.  Physically, I'm much more mobile and my legs work, they aren't full of lead, for example, but my joints ache, especially my elbows.  My knees hurt less than before.  So, I'm hopeful for my elbows.  My headaches are less intense.  I'm so happy about that.  The dystonia is less intense, too.  It's worst during my period.  It's almost non existent if I'm not on my period or ovulating, but it's still bad sometimes.  

 

I hope you are doing ok. BB.  I'll your thread soon.

 

Notes:  Did not sleep until about 2 am one night this week.  Can't sleep .past about 7:00 except that today I did sleep until 8:00.  I was able to take my daughter to a playdate yesterday after school.  I'm making it to class every day.  Still having problems with my digestion and bowels.  Very frustrated with that.  Always constipated!  Once in a while I have to have caffeinated tea.  I have up caffeinated coffee long ago.  Had a bad headache this week, but ibuprofen helped.  Very depressed at night usually.  That last couple of nights were better.  Today was very frustrating.  Had some anxiety that was worse than usual.  My appetite was good this week.  I've been somewhat irritable.  It's probably time for my period again!  

 

[Rabe]

Hi Rosetta,

I didnt know you were going to be staying that long!  Can I ask why you are there for that amount of time?

Im sorry it has been hard, though I can understand it well.  I dont do well it totally new places...I just dont..and it takes me quite bit of time to adjust so I sure understand that and empathize with you.

Im glad you are keeping busy but it sounds as if it is a blessing somedays and not others which makes sense given the unpredictability of your symptoms.

Thinking about you lots, my dear friend, and hoping you have had some ok moments and parts of days.  Please take are of you!!!  Love and hugs to you Rosetta!💜 I have to say your strength is incredible!  I would not have been able to do what you are doing!  I know it is a challenge, but I hope you will give yourself a TON of credit for doing this!  You just continue to amaze me over and over!!  💜

[Rosetta]

We are moving tomorrow, and we won't have internet at home for 2 months.  So, I won't be posting.  

 

I'm doing ok at the moment.  It's still very up and down, but the bad nights are not 'horrible' right now.  I am having hot flashes and night sweats every night -- sometimes 3 per nights.  The days are very manageable.  The nights are emotionally miserable.  I don't know what to change.  It gets better then worse better the worse.  S I is occasional.  It's so bizarre.  My mood is fine in the day if irritable some days.  I go to sleep at night and wake up at about 2:00 in Mental agony.  If my physical aches and pains are worse my mental state is better.  I have to keep hoping my nights will be normal someday.  Im lucky the days are so good.

 

Tomorrow we are having a little party for my daughter's friends.  I'm grateful I can function during the day.  Very grateful.  This is Despite lack of sleep some nights.  

 

Onward.

[Rosetta]

@Rabe  Hi.  We are here because my husband has flexibility with his work and so my daughter can spend a whole semester at one school instead of switching mid stream.  She needed to learn Spanish.  So, here we are.  It's better for me than being at home - mostly.  It's hard, but anywhere is hard for me right now.  This has proved that to me.  My own brain is torturing me for a least an hour every night for about 2 weeks per month.  It's truly bizarre, but at least here I go to class everyday.  It's a wonderful distraction. I don't enjoy much of anything else unfortunately.  Sometimes I feel neutral.  That's nice.  Every so often I feel joy.  I never know when it will happen.  I feel the loss of enjoyment of being with my daughter even while she is right there in front of me, but today we laughed together.  So unexpected.  

 

 Hopefully, I will keep healing.  It's slow.  Akathi si  a is rare.  That's a huge relief.

[Giulietta]

Hello @Rosetta

 

I will miss you over the next two months while you are without internet access. I think the latter can be a blessing. Your support means a lot to me and I know many, many others. I am thinking of you and sending positive thoughts as you continue to heal.  It's nice that the akathisi is rare.

 

You do get a ton of credit as @Rabe said for living abroad - setting up a household,  taking care of your family and taking classes - all while continuing to cope with WD symptoms.

 

Hugs,

 

Giuilietta

 

 

[Rabe]

Im sorry I missed your last posts, Rosetta.  Hope these 2 months hold some good moments and special moments to tuck in your heart and bring back with you!  Take care of you!  Perhaps you will be able to check in somehow along the way.

In any case will be thinking about you!!  

Juset wanted to say you have been a do continue to heal!  My heavens!  You packed up and went to another country for all this time!  There was a time you could not cook or do laundry or pack a bag or sort things.  Your healing has, to me, been incredible!!  I know it has been slow for you and you would wish it to be here today, but I just know it is really there, especially theses last several months.  I am so happy you like your class and that overall your time there is going ok.  You are there with your daughter and your family and i think this is something she will remember always.  It still is unbelievable to me that you did this!!  You are incredible Rosetta!!  Love and hugs my hear friend!!💜

[Carmie]

Hi Rosetta, 

 

I know you’re without internet for a little while, just wanted to let you know I’m thinking of you and this message will be waiting for you when you get back😃🧡

[Rosetta]

Hi, everyone.  I’m back at home. Thanks to everyone who checked in.  I have been following your stories when I had a chance to use internet here and there. 

 

This isn’t a very uplifting post, but, objectively, I’m doing fine.  I did heal a lot during the last two months.  I don’t feel the emotion connected with that achievement.  I believe I will eventually.

 

 I had a wave at the end of December-beginning of January.  It was much more mild than previous waves.  I’m currently dealing with the depression I always experience after a wave.

 

Being home is difficult.  The change in routine is hard on me, and I’m lonely.

Being here feels pointless.  I miss having classes and tourist trips.  It’s reality.  I’m watching El Ministerio del Tiempo on Netflix to cope.

 

My cat disappeared while we were gone.  That has been very upsetting.  I feel intense guilt for leaving her with someone else here at the house, I miss her desperately, and this doesn’t feel like home without her.  I’m losing hope that I will find her.  My daughter cries over her loss.  It’s all very painful.  We had hoped she was nearby and would come home when she realized we were back.  It’s been a week.  I’m handing out flyers, checking with shelters, etc.  I’m visiting every neighbor, and now I’m casting the net further afield.

 

All in all WD is much less intense than before.  It’s been quite tolerable for the last 2 months.  I have not had a period in 2 months either.  That helps.  I have had milder waves each month that seemed to coincide with some physical markers of menses - headaches mostly as well as aches in my joints - left and right sides— that feel like inflammation.  The constant  physical issues continue on my right side.  Reading, using the phone to write (such as writing this post), and sleeping cause muscle tension, numbness and mild pain.  Still having intermittent sleep apnea — dystonia related I believe.

 

Added by edit:  Just in the last month I had a number of nights when I would wake in a panic in the night.  Sometimes more than once.  The crushing fear upon waking up for good has gone and has been replaced by a lesser, much more run of the mill anxiety.  Sometimes, I don’t have that anxiety at all.  (So amazing to finally see the light at the end of that tunnel!!) I still wake up in the middle of the night and worry, ruminate, feel neuro-emotions, etc far too often.  That comes and goes, but being awake in the night every night is a constant, and I think that’s a normal sleep pattern for my age.  I wish reading didn’t bother my muscles so much.  It’s so boring to be awake in the night and I tend to ruminate unless I can distract myself.  I don’t watch TV for fear I won’t be able to go back to sleep.

 

Im shocked that I remembered my password.  I guess I’m getting back to normal slowly but surely.  I can leave the house everyday to pick up my daughter.  Facing the clutter has not been fun, but the intense anxiety is almost completely gone.  I had a medium intensity anxiety and a mild akathisia type feeling in my limbs during the last wave.  Now to get through this ensuing depression and start to do household chores again.

 

Please send good vibes for my dear kitty.  I hope she is ok wherever she is.

[Gridley]

4 minutes ago, Rosetta said:

I’m doing fine.

Bienvenido, Rosetta.  It's great to hear from you and to read about your improvements.  You really are doing so much better, even if you can't feel it.

 

I'm so sorry about your cat and hope she returns soon.  Good vibes sent, for sure.

[wantrelief]

Rosetta!  I have been thinking about you.  I am heartened to read of your improvements.....it sounds like a lot of healing has been happening. 

 

I am really sorry to hear about your kitty and hope you find her.  Sending good vibes.

[Mic323]

Hi @wantrelief how long did it usually take you to stabilise? Also did you notice any disturbance when switching to liquid citlopram?
 

I reinstated 7 weeks ago on 5mg Citlopram and stabilised but kept having odd waves for 2 days here and there increased too fast and knocked my CNS the last 4 weeks have been crazy sleep on and off can’t eat a great deal plus anxiety panic attacks. Staying on 5mg to hopefully stabilise but considering going back up to 20mg slowly where it worked well for 5 years but know I will have side effects going up. As not stable just yet.
 

all the best 

 

M

[wantrelief]

Hi @Mic323 - I have answered you on your thread so we don't disrupt Rosetta's journal.

[FarmGirlWorks]

@Rosetta, I know how stressful it is to have a cat disappear when you are gone...sending good good energy your cat's way and hope the way back presents itself. Welcome back and thanks for the update.

[Elyssa143]

@Rosetta

I have been thinking about you lately! I came often to see your thread for updates but you were still out of town! I am glad to see so many improvements, how encouraging that is for you and all of us who follow you! I know its still hard to struggle as im 22 months and i still struggle but definitely improving just very slowly! I am very sorry to hear about your cat. that is heartbreaking I understand completely! But dont give up hope I had one cat go missing for a few months and randomly show back up. Sometimes someone will take them in and they cant get back out and then one day escape! Im putting out good vibes that he comes home and is safe. You said you still struggle with the depression is it as bad? Is it more situational or still chemical?  Do you still have the suicidal ideations? You said that it is much better and less intense? That is fantastic although i understand the discouragement when were more functional yet mentally we still struggle pretty bad. Looking forward to hearing back. Love and light your way. 

[Rosetta]

Hi, Elyssa,

Thanks for visiting me.  I always get depressed after a wave.  It’s a part of the re-wiring for me.  I try to take it in stride as best I can.  I don’t think it’s situational, no.  Objectively, my life is fine if boring and pointless.  

 

Fortunately, the SI has been fairly mild lately and infrequent.  I can appreciate that it’s just my brain struggling with the changes.  It’s sad and upsetting when it’s happening, but I’m in no danger.  I know when my brain is lying to me.  How different this is than in the past!  I’m not just holding on thinking of my family and hoping the nightmare will end someday.  The nightmare has ended, and now I’m quite traumatized, but I’m still here.  

 

The fact that the cat isn’t here is very, very difficult for me.  I can barely stand it.  I had never been able to get her to use a litter box.  That was a constant concern, but she was always on the roof or the balcony.  I thought she was safe after 7 1/2 years of being indoor/outdoor.  Maybe I was wrong.  I feel horrible guilty, and I’m also missing her terribly.  Maybe she still out there, and she will come back.  I hope so.

[Elyssa143]

@Rosetta that is wonderful to hear that the nightmare has passed now your just traumatized, although the being traumatized is awful in itself and i understand this 100%. I also understand that the depression is not situational, maybe i worded it wrong when i said it i think i ment is it more so because of the chemical feelings or being discouraged that you are not feeling better persay. Also the fact that the si has been so infrequent and you feel as though your not holding on anymore is such a wonderful thing. I have a hard time knowing what people mean when they say si? So i get this feeling of "wanting to die" or not wanting to do this anymore and then i have awful horrinle intrusive thoughts where my brain says life isnt worth it you should just kill yourself but if course this is nothing new and i know its chemical. When you say the nightmare has ended do you feel your through the worst of it now and your confident in your healing? I am definitely healing but it still so slow, scary and painful. Like i said i often have that feeling of not wanting to do this anymore, the uncomfortableness in my stomach that makes me feel like i want to die, the depression and hopelessness and awful intrusive thoughts and then the internal restlessness  "Akathisia". I do hope these will go sometime soon or atleast this year will bring more healing i look forward to being in a place where i no longer worry i wont make it or that im more confident in my healing. I still struggle and go up and down daily but i guess im still early. It breaks my heart that your so upset about your cat. I understand i love my dogs :(. Also the guilt that you feel especially since you werent in town. But its not your fault at all. Cats are funny and love to wander and get into stuff. I do pray she comes home!!! I am glad your back home as well💗🙏

[Rosetta]

@Elyssa143 Yes, I think I’m through the worst part.  That is true.  We will see what happens when I have another period.  I would like to believe that “I’m out of the woods,” and to think that is possible is a wonderful feeling.  

 

It’s quite hard to believe I might have turned a corner.  Sometimes, I have a very strange sense that in some parallel universe I “didn’t make it.”  It’s really that unbelievable that I could have survived aka this ia.  (My phone doesn’t like that word; it refuses to let me use it.  I kid you not.  That why it is broken up that way.).  I am completely confident that I am healing and that I can handle anything that is coming up in this journey.  That said, I am afraid if another big wave, of course.

 

I understand your distinction — depression that is situational for a normal person vs. situational for a person in WD.  No, I’m not depressed because I’m discouraged that I have not healed enough at this point.  It’s “chemical” to a great extent mixed with some difficulty adjusting to being home.  There are some neuro-emotions, too, especially when I wake up in the night.  I’m not exercising, and I need to correct that pronto.

 

The fact that you know that SI is “chemical” is very, very fortunate, Elyssa.  If not for SA I would never have known.  I don’t think I would be here right now.  I like to hope that I would have survived somehow, but I simply could not have known that there was any hope that what I was feeling was not real.  Aka this ia was a concept completely unknown to me prior to finding SA.  I did not even conceive of it as a condition that would stop.  I thought what I was feeling was an integral part of the world; that I was experiencing reality and being terrified was justified.  I was furious that my husband did not see what I could see about the danger lurking everywhere.

 

Twenty-two months is a long time.  Don’t let arbitrary time milestones mess with your mind.  You won’t feel healed at the magic 24 month point.  Put that idea away.  However, it is very true that the third year brings a LOT of healing.  I had read that prior to my 2 year anniversary and, at the time, I could not IMAGINE being sick that long, but I was, and I made it through.  You will, too.  You won’t realize it when you cross the threshold.  You will realize it later.  A couple of months later.  I can look back and see that in just the last two months a weight has lifted.  I expect another wave, maybe even a bad one, but the constant, daily, anxiety has gone, more or less.  I’m not sure when it stopped being a daily burden and became a burden that I carried only during a wave.  Sometime in August or maybe July?  

 

(I’ll put that on your thread so that you can read it later if you need it.)

 

During September and October, the nightly misery of repetitive cortisol spikes coexisted with some fewer hours of daytime anxiety for a while.   Then, the torture of nighttime cortisol spikes took the place of daytime anxiety that lasted for hours, and the morning anxiety wore off enough to let me function after I got out of bed.  For a while I was relatively anxiety free after about 8:00 am, but I was so tired and traumatized by waking up in fear over and over again that I didn’t want to do much during the day.  I was still dreading bedtime because of the nighttime anxiety in November.  The last time I had a period was in October.  The nighttime cortisol spikes and menses seem to be linked.

 

For September and the first two weeks of October I had classes in the afternoon beginning at 1:00 pm.  Beginning about October 15 my classes began at 9 am and I walked to class which took about 15 minutes.  In November, my walk to class was 30 minutes because I had moved.  Then, I hyperextended my big toe when I slipped in the shower.  I think that was around Nov 15 maybe.  I couldn’t walk very well for about a week or two.  So, I used taxis.   After my toe healed enough, because I had moved, my walk to class was 45 minutes. I couldn’t use my toe and I had to walk in the side of my foot.  I think it’s possible that getting out to walk early in the morning everyday from mid-October helped in some way.   I saw a lot of healing in November and December, but the lack of a period could have been a big part of it, too.

 

I think you know you are going to be ok Elyssa.  Hang in there!  

[Elyssa143]

Hey Rosetta,

Thank you so much for such a lengthy and wonderful reply I truly appreciate it. Along with your words of encouragement! I am so glad you are doing alot better this is so good to see! Im glad you can relate to the akasthsia (well not that you are suffering) but that someone understands the feeling.  My Akathisia has been pretty constant here lately im almost wondering if some layers are coming off and this is more prevalent now? It is soooo uncomfortable and then of course my brain automatically goes to suicide of course i dont want to die. Did yours last this far out too? And did your brain automatically go straight to that? This feeling scares me. I already have the awful intrusive si and thoughts about life not being worth it. I also get scared that im this far out and still feel like this, i get scared it means i wont make it or something.  My biggest fear is getting worse or not being able to handle it and giving up. Looking forward to hearing back. I sure hope your doing well today! Thank you!

[Rosetta]

@Elyssa143 You are going to make it.  The same way you have made it this far — by holding on and taking it day by day.  Aka this ia lasted a long time for me — definitely I still had it pretty bad at 19 months off all medications.  SI, too.  It gets better gradually just like all the rest.  Someday it will be tolerable, but will still be scary because of the memory of when it was bad.

 

You are not going to get worse - you will feel that you have gotten worse when a wave comes, but when you come out of the wave the baseline will be better - even if you can’t feel that.  We only see improvement over several months.  Rarely can we see it in real time.  You will look back and say, Oh that’s when my baseline improved!  I don’t know why it appears this way to us.  Maybe it is the tricks our minds are playing.  I had to rely on my husbands observations and trust him that he could see improvements I couldn’t see.  When a particularly bad wave comes it feels like you have lost all ground and gone backwards.  The people around you may get discouraged, too, but this is the nature of the trajectory.  Everyone who has healed - even partially — can attest to that.

 

Yes, my brain creates SI when I have aka - over and over.  Exactly.  I didn’t want to die, but I had the SI anyway.  It’s very strange indeed isn’t it?

 

I understand completely that at 19 months you feel that it’s been too long and you won’t heal.  It is a ridiculous amount of time!  But you will heal.  Some people heal from CT much earlier than others.  I have had a long recovery, and it’s still going on, but I think mine has been a bit longer than average.

 

I know this is horrible, but you will get through it!

[Elyssa143]

@Rosetta

Thank you so much for your kind words and awesome support. Your writing is quite amazing. So thorough and detailed. Your right I will make it, its just the fear my brain is and has been feeding me for almost two years. That has been my biggest fear. My brain constantly tells me ill get worse and will give up. Or itll play out some awful scenario. It really is awful, but maybe im getting a tad better at not allowing them to scare me as much? Hopefully anyway.  It is nice to have someone else who understands although i dont wish this on anyone. I m greatful for your constant support. I do wish there was some magic number where we got better. I also get this awful feeling of not wanting to do this anymore that really scares me too. Then my brain randomly freaks out about being in withdrawl and how much longer this will take. But honestly even though its still hell it is way less. I think i just get really discouraged it is still happening and i dont feel ok or mentally stable. But I am working on beign a bit more greatful. How are you today?

[Rosetta]

Hi @Elyssa143 I’m so sorry you are going through this.  Your body is constantly producing the substance — think of it as a hormone — that tells you to be afraid, and your mind is trying to make sense of that.  That’s why you keep thinking over and over all those thoughts.  Your mind is trying to work out a solution.  It is torturous, I know.   is the only way to get some relief until there will come a day when the hormone is produced only in times of real need instead of for no reason at all.  You just have to hang on.  You can see it’s getting better.  That is wonderful.  Hold on to that.

 

I’m doing ok.  I’m very, very sad about my cat.  I hate myself for letting something happen to her.  But I managed to grocery shop, cook dinner and let my daughter have friend over in my messy house.  I could not have done that before.  It was very uncomfortable to have another child here, but I managed and when she went home I chopped onions, made guacamole and put together 7 layer dip.  It’s seems so simple, but that was a terrible challenge for me before.  I would have burned the meat, cut myself and ended up on the floor in tears.  Instead, it all went fine tonight.  It is such a relief to have the ability to just cook dinner!!

 

Thinking of you.  You will be ok.  Trust me. I made it through, and you will, too.  Just hang on!

[Rosetta]

Update:  In one month it will be 3 years since I CT’d Zoloft, Xanax, and, Trazodone.

 

Three years!!  Positive: I feel sane again!! Looking back, I’ve been reliably sane quite a while now — maybe six months I’ve been completely free of all traces of DP and DR except upon awakening the night.  That continues to feel surreal, but it’s mildly surreal (if feeling deeply depressed upon awakening in the night in a way one does not feel during the day can be considered sane.).  In the daytime, I am me again!

 

Positive: I don’t anger easily any longer!  What a relief.  Bad things happen, and I feel less.  I dropped and broke my phone’s screen this week.  I was upset, but I did not lose it the way I would have before.  I’m hoping the days of breaking down in tears over dropping and breaking things are almost over.  (Especially because I still have limited control over my right hand at times.)

 

Negative: The nights are still quite hard. I clench my jaw very strongly and often wake up over and over in pain.  At times, it’s not pain, but quite uncomfortable.  My neck, shoulders and chest are tight on both sides.  My right elbow is arthritic-ish.  It’s affected by the clenching somehow. This has become more painful in the past several months, and then sometimes it barely hurts at all.  Very odd.  Another muscular issue caused by ADWD.

 

Positive changes: (1) I’m not having night sweats right now.  Only in the last 1-2 months have those stopped.  That was an every night, 2-3 times per night, ordeal for probably the past year.  I still wake up, but the covers stay on.  (2) I don’t wake up terrified.  I feel awful on an emotional level - a bit scared, immensely sad, guilty, but the intense fear is not there.

 

Another postive: The energy my muscles receive or electrical signal - whatever allows me to move as I intend to most of the time — has returned!!  I don’t feel 80, I don’t act 80, I don’t move as if I’m 80 any longer.  I can walk as far as I need to almost every time, and I can walk at the pace I want to.  I can even walk fast!! That was impossible just 6 months ago except very rarely.

 

Negatives: (1) I still drop things with my right hand.  There’s an issue with strength or coordination there especially when I’m feeling anxious.  I’m still hoping there is no permanent damage on that side.  (2)  I continue to have issues with my right toes contracting, the muscle running down my shin bone on the outside contracting quite strongly and causing severe discomfort.  At the same time this is happening my right side chest and neck are contracting.  

 

The most troubling issue is that I’m quite depressed at the moment, but I can function at a low level despite that.  It’s easier to do everything now from an emotional standpoint.  Rarely do I feel that I can’t do what I need to do in the moment.

Sometimes I don’t want to get up in the morning, but I do anyway.  I can’t sleep past about 6:30 or 7.  Even if I just get my daughter ready for school and go to the couch at least I’m up.  

 

Being home is difficult.  The clutter is still here; the gargantuan task of sorting through it is still here; the fear of people seeing my house is still here.  It’s overwhelming, but seeing physical improvements gives me hope I can start to tackle it.  I’m hoping that on an emotional level I’ll be better equipped as well with less neuro-emotions and less cog-fog confusion to stop me from sorting.

 

I did leave the house this week.  I went out to dinner Wednesday and for coffee Thurs and Fri, and I lifted weights at the gym on Thurs.  I work the muscles that are contracting when I sleep at night.  Hopefully, if I keep doing that I will change what is happening in the night.  I’m not sure that possible, but it’s worth a shot.

 

I sum, there have been a lot of positive changes, and I know there will be more.

[thecowisback]

wow - it's great to read about so many positive improvements!!! 🥰

[IWantToHeal]

@Rosetta Your story is inspiring and your positivity has really helped me get out of an emotional slump. I'm so glad to hear that so many of your symptoms have improved.

 

I cold turkeyed myself from Zoloft about 5 months ago and can relate to a lot of the symptoms you've described., I noticed you mentioned that you had tardive dyskinesia in your original post. How does this manifest for you? And how have the symptoms improved over time? I am experiencing involuntary mouth movements and tongue movements with it and a weird twitch in my right eye. It doesn't happen all the time though. When I read information that says these effects can be permanent I get a little bit terrified to be honest.

[Elyssa143]

@Rosetta

Hi💗

Thank you for being such a positive support! I know you have been through hell and still have lots healing to do! But your positive update is one many latch onto for hope, so thank you for that. You said in your recent update that your struggling with the depression, its chemical im assuming? Can you describe it? Is this new or something youve battled this whole time? Are the si, intrusive thoughts and si feelings pretty much non existent? Ive had some better days here for a few days and its been a blessing! Im able to get some sort of tiny good feeling when im with my kids or dogs. Able to look forward to the future but with that comes alot of fear of the symptoms intensifying and of course the awful feeling of not wanting to live and the horrible thoughts about life not being worth it. its torture to feel like you have a grasp on this and your life but be so scared of the symptoms youve been having and to be slammed back down again, but eventually it has to improve and not get as horrific again right? I mean the healing has to come. I am definitely "better" than 6 months ago but when im struggling its hard to see but deep down i believe i know it.  I just hope and pray the suicidal stuff dies down for me and stays that way here soon. I often wonder if we do get to a place that is more "comfortable " but yet still healing but we know it passes and we know our healing is coming but we our brains dont automatically go to the absolute worst? It has to right? I hope your weekend has been as pleasant as possible.  I am glad to see you are improving! Love and light💗

[Rosetta]

4 hours ago, Elyssa143 said:

 

 

 eventually it has to improve and not get as horrific again right?

 

. I often wonder if we do get to a place that is more "comfortable " but yet still healing but we know it passes and we know our healing is coming but we our brains dont automatically go to the absolute worst? It has to right? I 

This is it!  I still have short moments of despair such as when I woke up with akathisia this morning, but they don’t last as long.  I don’t have SI.  I am so sick of this coming Back!! Yet, I’m going to do what I want to do today.  I don’t feel that I need to hide all day.  @Elyssa143

[Rosetta]

10 hours ago, IWantToHeal said:

 

I cold turkeyed myself from Zoloft about 5 months ago and can relate to a lot of the symptoms you've described., I noticed you mentioned that you had tardive dyskinesia in your original post. How does this manifest for you? And how have the symptoms improved over time? I am experiencing involuntary mouth movements and tongue movements with it and a weird twitch in my right eye. It doesn't happen all the time though. When I read information that says these effects can be permanent I get a little bit terrified to be honest.

 

Not permanent.  My lay opinion is that doctors think it’s permanent because they make prescribing decisions that intensify this problem.  They cold switch drugs, they add drugs in doses that are too high, they CT people or they reduce by more than 10% per month (or at least by more than the person’s nervous system can handle.). Then they see the problem continue or worsen.  Well, of course!!!

 

This problem has been worse for me in the  past.  I used to have pain in my forearm and horrible headaches.  I used to have my tongue pressed up against the roof of my mouth even when I was awake and conscious of the problem.  I have regained more control and now it is only out of control when I sleep.  Not every moment I’m asleep, but a lot.  (This has affected my breathing for many years — 16 years or more.  You have no idea how angry I am that when I was diagnosed with sleep apnea in 2004 no one evaluated the affect Celexa was having on my body!!)

 

My eye is so much better.  No more twitching there.  I’m not sure it’s completely unaffected, but it’s rare that I feel anything unusual in my eye or my temple.  If I read I can feel something.  When I have my period I feel a tingle in the side of my face — sometimes.  I do not have the horrible headaches I used to have.  There is no more numbness!!! My nose and face and even my eye used to feel tingly and numb. (So did my forearm and fingers.) No more.  It slowly got better.   At one point it was only if I read and used my right hand to type that I felt tingles and numbness.  This is true now, too, but it’s better. This tells me that it will eventually go away.

 

Don’t panic if it gets worse before it gets better.  Doctors don’t know anything.  If it gets worse that means nothing.  Mine got worse after I CT.  Do not let that scare you.  You will heal.  These drugs have been handed out without so much as monitoring those on them for these side affects.  We were all guinea pigs.  There should be piles of research, spreadsheets and searchable databases and tons of people working on this for the past 30 years?  Nope!  There was no research before hundreds of thousands were all poisoned, and there is still very little research now.  SA is probably the best repository of the negative affects of these drugs and the prescribing practices that harm people.  “Anectodal” “not reliable” - “irrelevant” Hah!!! Well, it’s all we have because the pharmaceutical companies and the government have no interest in researching this enormous problem, do they?!!  It’s disgusting!  And there is my akathisia fueled rant for the day!

 

You will be fine as long as you are very careful.  Unless you reinstate with advice from a moderator here, stay off almost all drugs except OTC painkillers.  1. Don’t take anything psychotropic, 2. Never touch an antibiotic known for harming the brain - I can’t remember the name of those — floroquinine-something — there are several in the same family and one has the brand name Cipro for short.  You can look it up on SA. 3.  Avoid having your teeth fixed during the use of adrenaline based numbing agents.  There’s an alternative the dentist has.  Insist upon on it!!  Protect your fragile nervous system for several years.  4. No Xanax, no pills to calm you for medical procedures, 5. no colonoscopy drugs to make you forget it all (roofie type drug), 6. no elective surgeries. — the last thing your brain needs is to be anesthetized right now.  7. No street drugs, of course, 8. no alcohol, 9. no weed — you are too fragile to take the risk.  Treat yourself like a newborn baby. 9. I wouldn’t get a vaccine if I were you, either.  

 

I haven’t read your story, but have you considered reinstatement?  It could be too late, too risky, but depending on your circumstances . . . You should make an informed decision on that right away.  Ask a moderator for advice.  Don’t just read the topic here at SA and go it alone.  It can backfire, but it has also saved some people a lot of misery.

 

Goodluck, IWant!

 

-R

[IWantToHeal]

@Rosetta Thank you for replying! I'm glad that the effects are not always permanent and that you were able to recover from the dyskinesia. I'm trying not to worry about it too much. For me it's a tension feeling in my jaw like it's always being clenched and sometimes my mouth opens and closes involuntarily and that has caused me to be self conscious because people who noticed it think I'm about to say something when I do it but it's just something that started while I was on the Sertraline and hasn't gone away since I discontinued. I really hope it eventually goes away. It doesn't happen all the time I've noticed only some of the time. Another effect I have is that occasionally both of my eyes widen. It turns my face into a shocked expression. It's really weird and distressing..

 

I've decided against reinstatement and I am going to just go forward with the withdrawal and hopefully things will get better with time. I'm angry that the drugs caused these issues in the first place and would rather not take my chances with any more pharmaceutical drugs as my trust in doctors has been completely eroded. I think it's a complete joke that these drugs are being handed out like candies when so many people have had horrific side effects.

 

I almost don't want to go the doctors at all about my symptoms because I don't feel I will be taken seriously and they will blame it on "depression" or a return of the "original condition". 

[Rosetta]

IWanttoHeal, (I relied on your thread.)

 

Feeling ok this morning except for muscle tension and being tired.  Slept late.  That’s so rare.  The alarm woke me out of a deep sleep — to pain from muscle tension, but I went back to sleep and took the munchkin to school late.  Really rare to be able to do that.  I still have mild morning cortisol almost every morning around 6:30-7:00.  

 

I hope I’m not getting sick.  My daughter was very whiney all weekend.  I’m pretty sure she has a bug.  My husband feels it, too.  Yuck.  It’s better than severe anxiety though!!

 

I had some cramps in my intestines day before yesterday.  I think they were hormone related.  

 

My gut is much better these days.  Everything is operating well in there.  It’s such a relief.  I think being in Europe helped.  They have laws about what is in the food that we don’t have.  I suspect my gut healed quite a bit over the past several months.

[Elyssa143]

@Rosetta

Hey! Sorry to see you werent feeling the best.  I sure hope everyone in your house hold feels better and the bug passes quickly!!!

[Icip]

Hey Rosetta,

 

I hope you’re well, I’m so happy to read that you’re improving. With every ‘step’ comes an inch of relief.

 

I came to your post after searching a term for poor cognition or brain fog (I can’t remember the exact one hehe), but have been pleasantly surprised by your writing; it’s lovely!

I’m normally one to make light of a bad situation that I’m in, but you’ve made so without the need of jokes from the way in which you compose.

 

My head right now is feeling empty and rather dull compared to pre-one week of Zoloft, I’m terrified every waking second that I’ve damaged myself, or my inner voice will never be as loud; you’ve helped to quell these thoughts a little by injecting a little hapless optimism.

 

I wrote my intro after a month (I think) in withdrawal. It’s flat and somehow monotonous to read so for yours 10 months in w/d after 14 years of usage to be so pleasant to read (not pleasant circumstances at all) I hope you recognise your ability:)).

 

I want to go into journalism when I’m older, whilst my writing is returning somewhat slowly back to normal (still feels very alien from my old self), I hope to be able to achieve your level.

 

Thank you for the positivity, and ounce of relief,

 

Icip.

[Rosetta]

Thank you @Icip  That is very kind of you

Rosetta