Requesting Help Please

[[Fa...]]

I need advice.  I will have to give a bit of back story because it is relevant.

I recently moved in with my daughter four months ago.  She was to help me out...to support me as I go through quite severe WD.  It was a big move and a distance away.  I am a caregiver to my mother...and, I required help.  She offered this option, and I accepted.  My daughter was unwilling to learn about this.  She felt having her own WD experience that she knew what she needed to.  I explained my situation clearly...that it would not be easy.  I let her FaceTime with me in the middle of episodes so she could see.  I did my best to prepare her.  

Unfortunately, my symptoms being as they are having Akathisia, she is not able to handle the reality of the day-to-day symptoms...especially when I am in Akathisia episodes.  'Rules' were put into place in order to 'control' my 'behaviour' which I cannot adhere to.  Very unrealistic expectations placed on me.  Not sure how many can relate to internal/mental/physical AKA, but you simply do what you have to live through episodes.  It is ugly. The end result is that it was suggested I leave.  I moved here to be able to be in a safe space to re-start my taper and the end result has been a huge set-back with major fall-out on all levels.

Because of how things have unfolded, I decided to stop tapering until I move.  That will not be until the beginning of November.  I am now on day 31 of my last reduction.  My reductions have been modest.  I have to go slow because of how symptomatic I am, and I don't have the option of being rendered incapable of being able to care for myself.  Needless to say, I am devastated, and I do consider this whole situation to be very traumatic, and my symptoms have become severe.  My NS is shot.  AKA has escalated, the sleep I got has decreased, and I do consider myself in a crisis.

I do not know if this long hold is going to be good for me.  It will be a total of approx 11 weeks before I can resume if I wait.  I do not stabilize.  There is no 'good' baseline to return to.  The damage was done prior to tapering.  So, my situation is not a lesser complicated one.  It is a complicated one.  I have been very symptomatic before I began tapering.  Tolerance WD is more than applicable here.  I have been in much suffering the entire time.  Akathisia has been with me for well over a year.  The only way I will get better is to remove this drug from my system.

Before this happened, I held for a three week period after a cut, and the third week I was worse.  I am now beyond four weeks, and I am far worse.  I have not been this bad for a long time.  I understand I am under a great deal of stress...the emotional fall-out has been intense.  And, I still have to live in this environment for another 6 weeks before I move with expectations placed on me I know I cannot meet.  The pressure is real.

I am reaching out to ask if perhaps a cut would benefit me.  My numbers were better after the cuts I did...then, the hammer would come down.  My reductions are not easy by any stretch of the imagination.  But, my numbers (score out of 10) were better after a reduction for a bit before I felt the WD from the reduction kick in.  But, with the stress and emotional toll I am experiencing, is it unwise for me to reduce now?  Reality is...I am not happy about moving again.  I am not going to have a miracle turnaround as soon as I move.  I will mourn this whole thing.  If I had my NS, I could handle this as we do when we are healthy.  Now, the emotions I have are magnified to epic proportions.  I will still be a caregiver for my mother.

This is not meant to be a sob story....but, background is needed for my question.  All information is in my history for reference.

My question is:

Could it be beneficial for me to reduce if holding is not going to produce any benefit for me and I am clearly much worse.  I know holds help many.  I am not one of those people.  Will be under much stress over the next 6 or more weeks. 

 

   

 

Edited September 25, 2023 by [Fa...]

[[al...]]

Wow!!   I am so sorry you are going through this!!   I know the extreme pain of AKA and it's impossible to function when you are in it.  I can't imagine having the life stresses you have on top of AKA.  

You say you feel a little better after a cut.  If I were you I would make a cut and if your history is accurate you will feel better.  Sometimes benzos can make AKA worse , it's a paradoxical effect. 

I really hope you get through this ok . Sending prayers to you.

[[Fa...]]

@[al...]  Thanks for your reply, Allen.  My history is a 'shit show'.  I suppose I should add in my history that I take Propranolol for the AKA, 40mg/day.

No doubt, I am emotionally not doing well.  The stresses are definitely too much for me...even a healthy me.  And, we all know that our symptoms get much worse when stressed.  And, this isn't just stress.  This is far more for me.  But, I will be dealing with this for a good while emotionally...and, I don't feel I can afford to stop tapering because this drug is making me very, very unwell.  The retort is always 'listen to your body'...there's too much going on to just listen to my body.  I can't separate one thing from another.

I see your history as a Drug and Alcohol Nurse.  I did not know that benzos could have a paradoxical effect on AKA.  

 

 

[[al...]]

Yes they can,  but looking at your history i highly suspect the atypical antipsychotic Rexalti they put you on  together with a highly sensitive NS through you into AKA.  Antipsychotics can put people in an AKA state.  These second generation ones really don't do it nearly as much but with your compromised NS that's probably what happened.  Not sure how they came up with the rationale that an antipsychotic could help withdrawal symptoms.  

But ya , try and make another cut and see if that helps.  I recall there was one member on this site that said his AKA didn't go away till he was off the benzo.  

[Guest [...]]

Hi @[al...]

i doubt very much the antipsychotic was prescribed for withdrawal symptoms. I think that far too often there’s doubt over the possibility of benzodiazepine withdrawal symptoms being able to present to the extent that they do, so the assumption is that there must be an underlying psychological disorder also at play, leading medical professionals to prescribe and treat a condition that simply does not exist, ultimately, causing even more harm to the patient.  

[[Fa...]]

@[al...]  The Rexulti was added after I landed in hospital after a rapid taper.  I remember the psychiatrist saying to me we're going to put you on a really nice drug to help you through your taper after handing me an Ashton Schedule.  Started at 1mg Rexulti and went up by .5 until I reached 2mg.  Somewhere in that time, the AKA started.  When I realized it could be the AP, I rapid tapered.  The gates of hell opened after that.  Almost a year since the AP has been gone...but, I'm sure it did a number on me and has made my taper far more problematic.  Mistakes left right and centre right out of the gate for the same reason as many...we just didn't know what we didn't know.

So, have no clue as to the rationale of the Rexulti.  I was in acute...sure they made their own diagnosis based on how I presented...which was in acute withdrawal.  You know I would have presented with many 'disorders' in that state.  But, the gates of hell opened for me after my last dose of Rexulti.  The mental component of AKA is by far the most dangerous for me.

 

 

[[Fa...]]

@[Wi...]  Yes, exactly.  That is exactly what happened.  It was not how it was explained to me...but, it is clear that is what happened.  And, when you look it up, it is used as an add-on for depressive disorder.  It was prescribed to me 'naked'...not in conjunction with an AD.

[[al...]]

The psychiatrist was an idiot

[Guest [...]]

Unfortunately, all too often it’s just a crap shoot when it comes to psychiatrists….

I’m sure there are some really open, intelligent psychiatrists out there (free thinkers), and then there are those who cause immeasurable harm, not unlike the doctors who refuse to believe the possibility that pharmaceutical companies may not be telling the whole truth about certain medications, in the name of profit. 

[[An...]]

I'm so sorry, Faith, about this situation. The whole thing. I know a little about relationship struggles during this. Don't have too much wisdom to share, only empathy. 

As far as holding, I guess I would continue to reduce very conservatively as you already are. I think if holds were very helpful, then a hold would make sense.

Mentally, it will likely feel better to be making a bit of progress in your taper as you go through this.💜

Prayers. Anna

[[Fa...]]

@[An...]  Thank you, Anna.  
 

The main reason I had decided to hold was because I can’t afford to have more intense episodes due to the disruption I create.  I can’t handle feeling the tension that happens.  It intensifies my symptoms to such a degree.  But, I am now the worst I’ve been…so, does it make sense given all of this that I don’t at least make a small reduction.  Of course I realize it could make me even worse regardless of how reductions have gone to date.

Relationship struggles during this are just devastating.  Any conflict has a massive impact.  Even hearing conflict that doesn’t involve me sets my NS off.

I do wish holds were useful for me.  

Thank you for your prayers.  We all need them.

Much Love.

Faith

 

[[mi...]]

@[Fa...] I fight holds all the time and always have. But I’m so destabilized I’m going to give a long hold a go. I get worse as I hold also but I’ve been reading a lot and people say that it gets worse before it gets better, especially if you’re unstable. Some day they notice no improvement for 2-3 months and then they turn a corner. I can’t cut anymore. I’m so unstable. I need my cns to stabilize. I’m gonna fight like hell to hold even if I get worse and see how j do. I’m wanting to make it 3 months minimum. Healing is more important to me than being off. If I can heal with a hold Maybe the healing period when I’m off won’t be as bad someday. 

[[Fa...]]

@[mi...] I wish you absolute success with your hold.  If it can bring you to where you want to be, then it will have done its job as it has for many people.

For me, I don't believe the AKA will heal until the drug is out of my body.  And, I've been dealing with it for a long time.  Having it throughout my entire taper has been...well, I think I've expressed it many times.  I'm terrified of it.  And, this would be a forced hold...not a planned one.  I've held for two months before.  This would be more like three.

I'm already a mess dealing with just this.  With this happening...it's my daughter, you know?  My brain and heart are broken now.  I know...both can heal.  I'm just trying to make the best decision I can.

 

[[mi...]]

Yeah totally get it. Not sure if I’ll get sicker either. I feel like my body hates K. But I have no choice but to try. I felt my best when i was tapering and stable. The cuts made me feel well and I put up with the second week. I got familiar with the pattern. Now the pattern is altered and I am so freaked out. Plus I have tons and tons of symptoms i never had. I try not to panic about my dilemma but it’s hard. 

[[...]]

Mikeyjoed,

I remember when my body told me it didn't like the K any longer too.

I was still in my taper and just kept on. But I remember that moment.

[[mi...]]

My body hated the k the second I got on it. Strangely though after 6 months I acclimated and felt better than ever, and continued that way until June when I changed brands and crashed. I’ve heard many people say that they feel paradoxical to Klonopin when they are not stable and when they stabilize, the paradoxical feeling goes away and I would completely agree because that has been my experience. I just need to figure out how to stabilize.

[[Fa...]]

@[mi...]  No one is sure of what will happen...ever...within this process.  We make the best decisions we can.  We bounce things off each other...we try to go by anecdotal evidence.  But, like they say...there are three possible outcomes...a positive one, a negative one, or no difference.  I have been around this bush so many times...it's like the definition of insanity.  Doing the same thing over and over and expecting a different outcome.  I've done that while well...when in benzo injury, it's like a symptom and an obsession.

I am much like you.  I'm not a Type A personality, but I like order.  I like predictability.  I like solutions to problems, and I used to enjoy problem solving.  I like my spreadsheets, my cupboards organized, my inner world organized.  It created a sense of safety for me...no matter how much of an illusion it was.  It 'did it' for me.

I have walked off of a benzo, AD's, a Z-drug with little fall-out years ago.  Many years ago.  So, I can relate to 'sailing through' a discontinuation.  When you are not used to experiencing a real struggle during a taper and then you find yourself in one, it knocks you on your ass.  It has you rethink life...it really does.  The scaffold collapses, and we look for anything to grab onto.  We can't be 'okay' until we find a solution, and we go nuts.  This process changes us on a fundamental level.  We will never be the same.  I like my organization ability...but, I'd like to think that when I'm out the other side of this, it will not be something I do for the control component...it will be just because I prefer it that way.  And, there is a difference.  If I don't find a sense of safety within myself through this, I'm gonna be in trouble.  Because it isn't coming from outside myself.  I've exhausted all avenues for that endeavour. I've written stuff like this before, but it really is a 'Dark Night of the Soul' experience.  It's an experience that we would never voluntarily put ourselves into for personal growth.  Hell no!  But, we will grow as a result of this.  Impossible not to.

When I am at my most heightened, my God...I am the most petrified, insecure, child-like, and borderline psychotic person.  If I were recorded, I wouldn't even be able to watch myself it would upset me so much.  But, that is where most of my time is spent...and, that is when I spend all my energy trying to find the secret to regaining control over this.  It's futile.  I've watched myself do this for almost 17 months now.  So, I get it.  I totally get it.

You may return to your fairly symptom-free taper, and you may not.  There is no formula for this.  And, as I've said before, it's always worth trying a long hold...some have great success.  There are also many factors to take into consideration.  So many, you couldn't even list them all.  But, always worth trying it.  And, you will have one of three outcomes.  Approaches have to change sometimes...it is just so random and illogical.  And, that's where we get caught up...random and illogical.  1+1=3 in BW.  This lack of control is transformational.  The term acceptance is used often...I look at it more as surrendering.  And, no...I've not learned that yet.   

Just want you to know I get you...and, I know your taper got derailed.  But, it could also be far, far worse.  Mine could be far, far worse.  I'm glad you experienced normality during your taper...as a husband and father.  You'll get through the remainder of it even if it is not as it was before.  You'll be good.  And, you'll continue to try what feels right as you move forward.

Wishing you only the best.