Please Pray for Me & Send Good Energy + Hope

[[So...]]

Yes @[ne...] I'm so happy that your reinstatement worked, please taper slow this time & don't make the same mistake twice!! This is something you really don't want to mess up.  & yes I am going to give the remeron 3 months before I begin the taper, but with the akathisia it really leaves me with little choice to put off a taper longer than that tho I believe.  I think I need to just get all these meds out of my body at a reasonable pace.  No more jumping up & down on stuff tho- that's for sure.

 

& yeah @[Fa...] reinstatement did not work for me either.  I think i was too far out, i was off 2.5 months before i reinstated.  Well, i guess it sorta worked for like a month but then I hit tolerance or something really insanely fast.

 

@[wi...] I would not be too afraid of getting movements, if you are over three months out you have most likely been thru the worst of it, so congratulations 🥳

[[Fa...]]

1 hour ago, [[S...] said:

Yes what I have learned from all of this is to expect the unexpected, like you said before @[Fa...]things can change on the drop of a dime, one minute, one day, one month to the next.  I remember just one month ago I was begging God to take the aka out of my abdomen & now it hasn't been there in a good while it has moved to my spine.  So think back a month ago & even if there changes are bad- I'm sure there are changes.  & so next month will have changes too & eventually it will HAVE to be a good change bcuz there is a limit to everything. 

I want you to know Faith that you have such a beautiful soul, & please never forget that things are healing for you as well.  You are off the antipsychotic now, OFF of it!  Your body is changing every day without that influence in it.  Did you aka begin with the AP introduction?  If so then every day off that is a day closer to being better.  I get scared for the same reasons when I have to cut my antidepressants but one day we will be done with all this tapering crap & we can be done worrying if it will "get worse".  I know the feeling so very well.  

I have also said many times that if my aka would just go I could deal with the rest of this crap for however long.. but it seems like the things that bother us the most like to stick around.  This is proof tho, for me right now too as I'm feeling a bit better, that our bodies KNOW how to do that.  I just had a friend who beat her aka tell me yesterday that the body can not maintain a state of akathisia forever & I find that to be very true.  & the funny thing is that I can also tell these feelings are so not me when they happen.  It's like our minds are hijacked so you just kind of have to separate from that as best you can.  Also, just think of how grateful for life we will be when this is all over.. we will all truly have a gratitude that can only be achieved thru intense suffrage. 

I know what it is like to be in deep & I am so very sorry you are in that far right now.  I will hold your hand until you come out ❤️  rock, twist, pace, do whatever you have to to get some relief.  Chant mantras & please never give up.  Lean on your supports.  Think about how glorious the day will be when this ends.  

As for it getting worse as you get lower, I was REALLY afraid of that too but it turns out when I did get CTed by that pharmacy it really wasn't as bad as I probably would have catastrophized in my mind.  I mean, it was BAD but I didn't see myself living thru something like that, but I have.  So have FAITH in yourself & know that whatever comes, you can get thru it as long as you just keep living ❤️. Time marches on at the same pace it always has, our bodies heal.  One day this will all be some sick, twisted memory & nothing more.

Your Hotel California reference sent shivers down my spine, how accuturate & chilling, as only someone who has been thru this can understand.  I'm sure everyone who has been in out shoes has too begged to be just 50% & then one day their wish was granted.  It is just up to damn father time.  

Have you considered doing a blind taper?  I have heard of several people with akathisia really benefitting from that.  It is basically where you do not know what day & how much your cuts are.  If anything, it may help eliminate some stress which I know we all need.  I may do a blind taper with my mirtazipine when I get to that med.  

@[wi...]. Thank you so much!! It was SUCH a huge relief to wake up semi normal today & it gave me a lot of hope just to know that my body still knows how to function, even if it comes back strong again just having had that glimpse of a window will be enough to pull me thru another bad wave I think.  This has happened a few times to me before too, I doubt it will last as it never does but it's enough to shine a lot of hope, right?  How was your appt?

Thank you so much for this thoughtful, heartfelt reply, Soapy. 

Wanna try to address all you've said here...

I think that it could have been a combo of tapering too quickly twice and the AP?  Or, it could have been just the AP.  It was prescribed as I began the 2nd taper to 'assist me' with it.  I knew nothing at that time about anything.  Nada!  The AKA started to creep in slowly...and, by about the third month in, I finally started to panic.  Looked up possible side affects, and it said restlessness.  A nice way of saying AKA.  So, I got myself off as quickly as I could.  When I did that, all hell broke loose.  I could literally feel a 'wall' come down in my mind...it was definitely helping with mental symptoms, but it was doing more damage than any good.  I didn't even think about the fact I basically CT's off the AP...I just chose to pretend it never happened because I was scared as hell.  Then, my friend said to me 'did you ever think that you are not only in WD from the benzo right now, but also from the AP?'.  At that time, it didn't even occur to me.  But, discontinuing it was what landed me in hospital in full blown AKA.  It's amazing when something is right in front of your face, and you don't even see it.  I just didn't want to.  And, yes...you are right, and your words echo the words of my friend...the further away I get from having it in my system, the more improvement I may see.  And, my pacing is not what it once was.

Thank you so much for holding my hand through this...what a lovely thing to say.  You, too, have a beautiful soul, Soapy.  I do try to imagine being well...being able to sit down on the couch, relax and watch a movie.  I imagine being able to sit with my dog...with him on my lap.  He looks at me, and I know he wonders why I never go and sit down with him.  And, when I can feel relaxation within my body again, and have the terror leave, it will be a day of great joy and celebration...and, lots of tears of gratitude.  I want this for all of us.  So, so badly.

That CT that happened at the hands of the pharmacy...what a blessing.  You know, I don't believe that everything happens for a reason, but a lot of things do.  And, I believe that was one of them for you!

I thought about a blind taper, but the person who does it has to have a good understanding of all that is going on, and a good understanding about ALL of this.  It would have to be my daughter, and I'm just not comfortable with that.  It did cross my mind though, and I did discuss it with her.

You have an incredibly positive attitude, Soapy.  Thank you for the light you shine...thank you for sharing it with all of us.  I am grateful for all of us having connected in this thread...all thanks to your call for prayers and support. 

Extending a big hug...

Much Love,

F

 

 

 

[[Fa...]]

@[So...]  How did it go with Angie today?

[[So...]]

@[Fa...] oh yes, tapering too quickly plus an AP will do it.. i hate to say it bcuz i know that it made you worse but I'm glad that you are off of the AP.  What a shame that the doctors put you on that to help with a taper.  I wish they could be more educated about these meds, no one who is not genuinely psychotic should be on an antipsychotic.  My dad had TD his whole life from Geodon & it was a mess.  They tried to put me on Serequil in rehab but I refused it becuz of that, thank God.  I know the progress is ungodly slow, but it's progress none the less right?  I know I am for sure in benzo & antidepressant wd, have been for awhile now, & that combo is NOT fun.  It also begins to get really confusing with tapering bcuz you do not know what is what anymore.

 

You will get that day Faith & respite is on its way for us all.  When your aka calms down, mine is always replaced with fatigue in my "windows" so expect to be able to get A LOT of couch time ❤️. Trust me, the fatigue is very welcoming after you are terrified out of your mind for so long.  I think the body just sort of poops out for awhile, it can't keep up that state forever.  & you can snuggle your dog & feel contentment!  

 

My mom actually said the same thing when we found out the pharmacy messed up.  That's when I knew I had to stick with it bcuz right before that happened I was actually begging for divine intervention to get me off the pills.. heh.  I didn't know what was happening at first & I was freaking out at my moms.  We literally drug tested my liquid compound to see if maybe they messed up the medication, nope it came up as a benzo.  Begged God that night to help me.  3 days after I find out they wrote the dosage wrong on the bottle. 

 

Whether you blind taper or not, it will all work out right & you will be off this crap when do you anticipate to jump at the rate you're going?  

 

I am grateful to have met you all too, God knows I could really use the support so I'm so thankful for this site.  I try to be as positive as I can, I'm not always great at it, but what do we have if not that?  I asked my mom before if I was in hell & she said "hell may be just as much torture as this but in hell there is no hope.  Here there is hope & that makes all the difference."  I truly believe she is right ❤️

[[Fa...]]

@[So...]  Oh God…I may have a year and a half still to taper off.  I had one offs of AP given to me in hospital, too only a month after I stopped the Rexulti.  I had involuntary body movements with one dose of each.  I refused all their meds after 5 days of BS…they released me for being noncompliant.  They didn’t listen to me.  Told them I had AKA, and they wanted to treat me for GAD and OCD.  I said you are trying to treat AKA and WD symptoms…there is no disorder.  This is the drug. That was kinda the last nail in the coffin, so-to-speak.  My NS was done.  And, this story is like so many others.  

[[PE...]]

4 minutes ago, [[F...] said:

@[So...]  Oh God…I may have a year and a half still to taper off.  I had one offs of AP given to me in hospital, too only a month after I stopped the Rexulti.  I had involuntary body movements with one dose of each.  I refused all their meds after 5 days of BS…they released me for being noncompliant.  They didn’t listen to me.  Told them I had AKA, and they wanted to treat me for GAD and OCD.  I said you are trying to treat AKA and WD symptoms…there is no disorder.  This is the drug. That was kinda the last nail in the coffin, so-to-speak.  My NS was done.  And, this story is like so many others.  

Omg 1.5 year to taper off!? On what dose were and are you on Faith?

[[Fa...]]

3 minutes ago, [[n...] said:

Omg 1.5 year to taper off!? On what dose were and are you on Faith?

I have already been tapering for 16 months.  Many complications/errors.  I started at 1.5mg of Clonazepam.  I’m only down to .86mg.  I am injured…so, it has been very difficult, Peppe.

[[So...]]

@[Fa...] hey, even if it takes you that long I'm sure that you will heal on the way down PLUS you are healing from the AP all the time now too, so don't forget that.  One of the things I think I get wrong a lot is that we have to be off all meds to heal, that is NOT true.  ❤️ omg you are already almost halfway off too, that is AWESOME!  I can't believe I started at 2mg of klonopin, screw these doctors for thinking an 18yr old girl needed that much.

[[PE...]]

Just now, [[F...] said:

I have already been tapering for 16 months.  Many complications/errors.  I started at 1.5mg of Clonazepam.  I’m only down to .86mg.  I am injured…so, it has been very difficult, Peppe.

I get it. I start from 1mg in three weeks. But will cut and hold if things get out of hands. 

My previous taper was a rollercoaster for the most of the time. From December. 0.25mg diazepam at one point but my body started to take a beating because of all the vomiting. 

Running out of meds. Bindging back to taper in a cycle.

I'm so happy found this place. I'm not alone anymore.

Hugs

[[PE...]]

3 minutes ago, [[S...] said:

@[Fa...] hey, even if it takes you that long I'm sure that you will heal on the way down PLUS you are healing from the AP all the time now too, so don't forget that.  One of the things I think I get wrong a lot is that we have to be off all meds to heal, that is NOT true.  ❤️ omg you are already almost halfway off too, that is AWESOME!  I can't believe I started at 2mg of klonopin, screw these doctors for thinking an 18yr old girl needed that much.

Wow so young and going thru this sopey. Girlpower

[[Fa...]]

Just now, [[S...] said:

@[Fa...] hey, even if it takes you that long I'm sure that you will heal on the way down PLUS you are healing from the AP all the time now too, so don't forget that.  One of the things I think I get wrong a lot is that we have to be off all meds to heal, that is NOT true.  ❤️ 

I believe that, too.  It’s been 9 months out from the last AP passing my lips.  So many people have told me to hold…and, I have held.  But, I was injured before I began tapering.  I had terror, facial twitching, back muscle spasms…others as well.  And, that was at full dose.  I started in a deficit position.  A hold will not help me.  This has to get out of my system.  I am feeling scared.  But, I have to move forward.

[[PE...]]

Yes that's the whole meaning with making a taper. To adjust/heal the brain slowly. 

[[PE...]]

Hope the chat thingy is back soon

[[Fa...]]

11 minutes ago, [[n...] said:

I get it. I start from 1mg in three weeks. But will cut and hold if things get out of hands. 

My previous taper was a rollercoaster for the most of the time. From December. 0.25mg diazepam at one point but my body started to take a beating because of all the vomiting. 

Running out of meds. Bindging back to taper in a cycle.

I'm so happy found this place. I'm not alone anymore.

Hugs

I’m very happy you found BB, too.  It will ensure you know the best way forward, and you will have support.

[[PE...]]

1 minute ago, [[F...] said:

I’m very happy you found BB, too.  It will ensure you know the best way forward, and you will have support.

[[PE...]]

Yes. There is a good vibe of empathy and understanding here. Like a family. 

I tried many forums, Reddit, drugs.com etc etc. But those are all to hard in words and not really supporting.

I try to get some rest. Hope you will have a good night Faith.

 

[[Fa...]]

2 minutes ago, [[n...] said:

Yes. There is a good vibe of empathy and understanding here. Like a family. 

I tried many forums, Reddit, drugs.com etc etc. But those are all to hard in words and not really supporting.

I try to get some rest. Hope you will have a good night Faith.

I am off to bed, too.  Sleep well.

[[wi...]]

5 hours ago, [[w...] said:

no movements yet, but yes, that is why I'm nervous nellie.  

I can just picture you on that gurney!  You are hilarious, sister!

I just realized that was you soapy, not faith with that hilarious story with the"it's just saline, hon", story!

 

Benzo brain strikes me again.  Anyhoo, it was a gem and I am smiling again now thinking of it.

I love when you wrote LIARS!  in your post. lol!

[[wi...]]

@[So...]  I was also on Geodon for 7 years.  That was one of the seven psych drugs I tapered off starting on 2019.

I hope to god I am going to make it and be okay.  Feeling scared and confused at the moment.  It came on like a freight train about 90 minutes ago.  I'm full of terror that I will never find a place to live that I can afford.  And what about working again?  I get exhausted just standing up sometimes.  I hope an angel stays with me tonight and grants me some sleep.  Please God, help me.

[[PE...]]

38 minutes ago, [[w...] said:

@[So...]  I was also on Geodon for 7 years.  That was one of the seven psych drugs I tapered off starting on 2019.

I hope to god I am going to make it and be okay.  Feeling scared and confused at the moment.  It came on like a freight train about 90 minutes ago.  I'm full of terror that I will never find a place to live that I can afford.  And what about working again?  I get exhausted just standing up sometimes.  I hope an angel stays with me tonight and grants me some sleep.  Please God, help me.

You will be ok my friend. Just a wave. Wait it out and try to calm your self down with slow deep breaths.

 

[[PE...]]

14 minutes ago, [[n...] said:

You will be ok my friend. Just a wave. Wait it out and try to calm your self down with slow deep breaths.

Sending a pray your way 

[[So...]]

@[Fa...] if you want my opinion, I think that a slow taper is the smartest move in your position.  That way you are still making progress & healing on the way down.  I am hoping the same thing kinda happens with these AD tapers, I will heal from the benzo on the way down from both of them 🙏  lord knows I am terrified of the mirt taper tho.  I don't know why I'm not scared at all for the Celexa but just thinking of the mirt makes me want to vomit, but it's what I must do.

 

@[wi...] how are you doing now?  As Pepe says, its just a wave, try to soothe yourself in whatever way possible & if you can't then hold tight & it will pass, okay?  We have your back here ❤️. The body can not stay in a wave forever. I have full confidence that you will heal like the many who have came before you, so don't worry about it!! You are so tough for getting off 7 psych meds, oh my!  You are DONE now friend, do not ever look back 😀

 

@[ne...] yes stay in this thread until chat comes back or stay even after that too!  We will have your back!  This thread is helping me a lot & I am really grateful for it.  Also, I am actually 25 yrs old now but 18 was when I was prescribed this crap.  Girl power indeed 😆 

 

I woke up at about an 8/10 today so that was discouraging but yesterday was enough to give me hope so I am powering thru.  I would have wished that window could have lasted longer but I suppose I was lucky to get one at all!

[[PE...]]

14 hours ago, [[n...] said:

You will be ok my friend. Just a wave. Wait it out and try to calm your self down with slow 

Ok good to know soapy. I had a zero sleep last night so hopefully I will sleep something tonight. 

 

[[So...]]

@[ne...] have you always had trouble sleeping or do you think its residual from the CT?

[[PE...]]

Yes. It's the reason i was first prescribed benzos. Zopiclone was the first.

I never had anxiety or depression except for now of course.