The Long Hold Support Group

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Hi folks this hold is the hardest part of the taper so far.l don't really know what l am expecting from holding l am hoping l will get some of my fight back.l can't face another cut but my thoughts are telling me l will never stabilise or get off these drugs.The one emotion l feel on a daily basis is despair.l hope that lifts.

  To everyone else l hope you have a better day.

 

HI Stut, I'm right there with you. I had a few better days , but now back to the worst kind of wd that I get, that's really debilitating. seems no matter what I do I still get slammed!

YOu have done well in your taper, so , if you can keep holding on I think/hope you will see improvements. I'm counting on it for myself. When I can't face cutting I know all there is to do is hold , that's what keeps me in place, and the fear that I will get worse if I cut, which is the most probable outcome of cutting when having a rough time.

my worst fears are that I will die from withdrawal , or live like this for the rest of my life, or that something else is wrong... all the "what ifs" that Wd is so good at exacerbating....

 

Hang in there Stut. this too shall pass....do you ever use affirmations? Although they don't necessarily change the symptoms , I do find they help my mood.

 

hugs and I hope things change for us soon  and anyone else having a rough time of it ,

love, MiYu

[[St...]]

Thank you Miyu l am just feeling frustrated and frightened this is never going to settle down.l understand everything you have said.l try to use positive affirmations however my thoughts are so negative at the moment l am finding it hard to use them.l am so sorry you are suffering so much l hope you get some relief soon.Thank you for your kind words.They mean so much to me.Sending hugs.

[[He...]]

Oh darn! Muscle pain in my neck seems to be traveling. Getting really bad muscle cramps in leg calves

And arms and thighs if I make sudden movements and of course, they wake me in the middle of the night.

 

What a joyous time this withdrawal is!

 

Well at least I haven’t lost my sense of humor!

 

Heath :oXo:

[[St...]]

Hi Heath l hope it settles soon.I remember reading comments about withdrawal before starting my taper and thinking it couldn't be that bad.How wrong was l.Good to keep a sense of humour.l hope everyone has a good day.

[[Ca...]]

Hey Guys..!!

Just wanted to say that when I was ready to cut, I kinda knew it and wanted to cut.. Though I personaly should have waited just a few weeks longer, but that was a cut n hold taper of often high lower dose percentages... (2.5v and below)

We all seem to want to cut, not avoid it.. After all this is, more often than not, physical dependance rather than addiction... Though fear of increased SX from further cutting can be a problem for us...

 

Its important to have faith in ourselves, relax, and trust in our tapers and any holds or adjustments we make...

Some of you probably remember how many times i did a cut, then went Woops..!! -too soon...!

Hope everyone does start to steady out soon, and Miyu, you are a real trooper... Im sure it will get easier...

 

My best to All...

 

[[St...]]

Thank you Cant for your wise words.l will move when I am ready l hope l know when.lt's all a learning curve.Have a good day.

[[Ma...]]

Oh darn! Muscle pain in my neck seems to be traveling. Getting really bad muscle cramps in leg calves

And arms and thighs if I make sudden movements and of course, they wake me in the middle of the night.

 

What a joyous time this withdrawal is!

 

Well at least I haven’t lost my sense of humor!

 

Heath :oXo:

 

That I have noticed most of us have kept our sense of humor ( at least a good part of the time) is one of the biggest things that shows me we will heal. 

[[La...]]

Hi folks this hold is the hardest part of the taper so far.l don't really know what l am expecting from holding l am hoping l will get some of my fight back.l can't face another cut but my thoughts are telling me l will never stabilise or get off these drugs.The one emotion l feel on a daily basis is despair.l hope that lifts.

  To everyone else l hope you have a better day.

 

 

Just trying to catch up here...

 

Stut- Sorry you are going through a tough time while holding. We are right there with you. We are really going back and forth. We have a better day and get hopeful and then the next day is rough again.  But, like you, we know we can't face another cut because that will only make things worse.  Hang in there. Hopefully a settling will come for all of us soon.

[[La...]]

Hi folks this hold is the hardest part of the taper so far.l don't really know what l am expecting from holding l am hoping l will get some of my fight back.l can't face another cut but my thoughts are telling me l will never stabilise or get off these drugs.The one emotion l feel on a daily basis is despair.l hope that lifts.

  To everyone else l hope you have a better day.

 

HI Stut, I'm right there with you. I had a few better days , but now back to the worst kind of wd that I get, that's really debilitating. seems no matter what I do I still get slammed!

YOu have done well in your taper, so , if you can keep holding on I think/hope you will see improvements. I'm counting on it for myself. When I can't face cutting I know all there is to do is hold , that's what keeps me in place, and the fear that I will get worse if I cut, which is the most probable outcome of cutting when having a rough time.

my worst fears are that I will die from withdrawal , or live like this for the rest of my life, or that something else is wrong... all the "what ifs" that Wd is so good at exacerbating....

 

Hang in there Stut. this too shall pass....do you ever use affirmations? Although they don't necessarily change the symptoms , I do find they help my mood.

 

hugs and I hope things change for us soon  and anyone else having a rough time of it ,

love, MiYu

 

MiYu-- Sorry you are back to the worst kind of w/d that you get  And, we can definitely relate to having better days and then getting slammed.  That's kind of how things have been going for us.  We had a much better day on Sat, with our longest span of extended calm, then on Sun, we had an extra rough night, and then yesterday was more tolerable again.  And I hear you on the fear of cutting, knowing it will make things worse--that's what keeps us holding as well. We are planning to hold as long as it takes until things settle down. 

 

Heath- Sorry to hear about the muscle pain. Hope it settles down for you soon.

[[St...]]

Hi Laura l hope you have longer spells of calm.l think we could all do with a break.l haven't had a good spell for a while so feeling deflated but it will happen.l am thinking of waiting till after the summer however I might chip off a bit before that.At the moment I, as you say, can't face it but hopefully l will get my mojo back.Only time will tell.Hugs to you and the family.

  Miyu l hope you are having a better day today.l think you are brave and strong.You are suffering so much but you reach out to help people.Keep going you will get there in the end.Hugs to you.

[[La...]]

Hi Laura l hope you have longer spells of calm.l think we could all do with a break.l haven't had a good spell for a while so feeling deflated but it will happen.l am thinking of waiting till after the summer however I might chip off a bit before that.At the moment I, as you say, can't face it but hopefully l will get my mojo back.Only time will tell.Hugs to you and the family.

  Miyu l hope you are having a better day today.l think you are brave and strong.You are suffering so much but you reach out to help people.Keep going you will get there in the end.Hugs to you.

 

Stut- Thanks. Yes, we are hoping for more as well. I can't tell you how nice it was too see her calm for such a long span of time on Sat.  And it really helps the rest of us--I feel so much stress from this whole situation and trying to get her through this nightmare.  Plus, I have two elderly parents here as well.  Honestly, we don't even need her anxiety to go away, we just need a lessening in the intensity. 

 

Sorry you are feeling so deflated. I think it makes sense to wait until summer and see how you are feeling then.  Hang in there. I'm hoping we all start getting some relief soon.

[Guest [...]]

A general question for you guys. Do we ever truly stabilise on a given dose? I've been on 12mg V for nearly two years and have cut other meds while on it but stability eludes me totally with V. I'm trying to microtaper down now as my depression and anxiety are unrelenting so thought a long hold would do me no good at all. I'd be interested in your opinions and experiences.

Staz

[[St...]]

Hi Staz l looked at your signature and l have to say you have tapered off some very heavy duty drugs not so long ago.In my opinion you should really let your brain adapt to all the changes. I think it would give you a better chance to taper off the diazepam successfully.This is my first long hold at the moment so l can't advise you on that however a lot here have had very successful long holds hopefully they will answer your question.

 

    Thank you Laura l hope your periods of calm increase for all your sakes.You are doing an amazing job.

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Any long hold people waiting for chest pains to stop? 

How long does it take for the chest pains to stop when you held your dose?

[Guest [...]]

Hi Staz l looked at your signature and l have to say you have tapered off some very heavy duty drugs not so long ago.In my opinion you should really let your brain adapt to all the changes. I think it would give you a better chance to taper off the diazepam successfully.This is my first long hold at the moment so l can't advise you on that however a lot here have had very successful long holds hopefully they will answer your question.

 

    Thank you Laura l hope your periods of calm increase for all your sakes.You are doing an amazing job.

Hi Stut,

Yep some pretty heavy duty meds I've come off of that's true. My problem is my depression and anxiety have got to the point I'm largely non functional most of the time with S.I. badly. If I thought holding would get me some relief I'd willingly try it but I've given it 3 months since my Seroquel taper and no joy. After 2 years a C/T and a reinstatement of V that was only partially successful I'm unsure about further holding back a V taper.

Not sure which way to jump tbh.

Staz

[[St...]]

That could be caused by withdrawal l am only taking a punt here Staz l would hold for 6 months.l know you want to get off but moving now when you are so unstable is very risky.If you are at risk Staz please contact someone.Please stay safe.l hope you start to get some relief sooner rather than later.

[[Mi...]]

I would like to join. I have done everything wrong and too fast as you will see from my signature. Don’t see any other option than to just hold everything and pray to stabilize. Don’t want to go up on the klonopin again. Recently started low dose lithium at 150 mg on advice of dr and husband but despite what they say I am not going to increase that.

 

Is there any hope that just holding tight will improve symptoms? Has that been the case for anybody else? I certainly can’t cut more now.

 

Since my cuts have experienced serious vision loss and difficulties concentrating. Everybody’s words are repeating in my head.

 

Anyone else feel like they have really screwed up?

 

Thanks,

Miamigirl

[Guest [...]]

That could be caused by withdrawal l am only taking a punt here Staz l would hold for 6 months.l know you want to get off but moving now when you are so unstable is very risky.If you are at risk Staz please contact someone.Please stay safe.l hope you start to get some relief sooner rather than later.

I'm safe Stut and thanks for your concern it's really appreciated.

On Thursday I'll be seeing Una so will talk things through with her again but as i see her weekly she's aware of my situation. My plan as it stands is to microtaper down to 11mg by the end of April and then hold. Una told me to updose to 12mg a while back but me being me I did but only held for a week or two when longer was needed. Part of the issue was my 83 year old mother had fallen down the stairs at home and was in hospital so that and cutting stress I was struggling with. Mum's back home now and doing ok so push on to 11mg then hold for at least May as Mrs Staz and I were planning a break at our place in Cornwall so wouldn't want to be going through w/d's while there.

Cheers

Staz

[[La...]]

Any long hold people waiting for chest pains to stop? 

How long does it take for the chest pains to stop when you held your dose?

 

 

Well, we've been doing a long hold and have seen a lot of symptoms go (tinnitus right ear, hip bone pain, akathisia), but chest pain wasn't anything we were dealing with.  Hopefully others will chime in on that.

 

But, as someone who is helping a family member through this nightmare, I've had lots of problems with chest pain myself (I'm sure it's the stress) and I've found something called Magnesium Calm to be really helpful.  I take the full dose, sometimes twice a day.

 

[[La...]]

I would like to join. I have done everything wrong and too fast as you will see from my signature. Don’t see any other option than to just hold everything and pray to stabilize. Don’t want to go up on the klonopin again. Recently started low dose lithium at 150 mg on advice of dr and husband but despite what they say I am not going to increase that.

 

Is there any hope that just holding tight will improve symptoms? Has that been the case for anybody else? I certainly can’t cut more now.

 

Since my cuts have experienced serious vision loss and difficulties concentrating. Everybody’s words are repeating in my head.

 

Anyone else feel like they have really screwed up?

 

Thanks,

Miamigirl

 

Miami- Hi, sorry for all you are going through.  I only have a few seconds now, but wanted to quickly say that yes, we've had that same experience of going too quickly at first and having to hold until things have settled down. We've held for about 6 months and seen a number of symptoms improve or go away (akathisia, bone pain, tinnitus, plus some weird stuff), but we've also had another symptom (anxiety over going to the bathroom, of all things) roll in, so we are continuing to hold until things settle down. 

 

We are in the same place as you are now--we can't cut further until things calm down.

 

Hopefully others here will chime in soon on their experiences with long holds. Good luck to you.

[[Mi...]]

Thanks Laura4321.

 

xxoo

Miamigirl

[[ar...]]

Hi there

 

Just wanted some advice. As you’ll see I’ve been through a lot particularly in the past year. My symptoms mean I’m housebound as I have CFS as well. But my life ground to a halt last June and the akathisia really limits me.

 

I have had constant akathisia since cts in June but definitely had it before that and think the lexapro/ escitalopram is where it all started.

 

But now I find myself on clonazepam (ten weeks now) and I’ve made a cut nearly 5 weeks ago. I have been getting paradoxical reactions when I take my doses and it’s hell. Hyper on top of the akathisia.

 

I’m desperate to get the dose down as believe the high dose is indeed paradoxical for me. I never feel calm on it.

 

But I also don’t know how much the 5mg lexapro plays into it too.

 

Benzo charity says I need to cut to get to a lower dose as it’s too much for me.

 

Just struggling as I have the akathisia which has never left and of course other wd symptoms.

 

But this awful seeming paradoxical reaction too!

 

I held for three months Oct-Jan and had some windows of lowered symptoms then got hit by sudden severe wds and akathisia off the charts, no idea why. I ended up on the clonazepam then.

 

What do I do? 😕 Thanks, AP

[[Mi...]]

Trying to learn how to use this. Why does my post #14508 have modify and remove icons at the top of it? Am I doing something wrong?

 

Thanks,

Miamigirl

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Thank you Laura I will try it.

I very much appreciate you responding!

[[Ca...]]

A general question for you guys. Do we ever truly stabilise on a given dose? I've been on 12mg V for nearly two years and have cut other meds while on it but stability eludes me totally with V. I'm trying to microtaper down now as my depression and anxiety are unrelenting so thought a long hold would do me no good at all. I'd be interested in your opinions and experiences.

Staz

Hey there Staz,

A good question for sure, and im sure u have spent much time pondering it...

Sometimes its a gut decision, and we ride the consequences out...

Stut makes some great points, and i also know the impact other meds can have, past and presant..

 

I never got perfectly stable before my next cut, but i did feel ready to cut when i did... Im sure longer holding time would have helped, to a point, perhaps...?

 

I personally feel that Holding some time would be the first and safest step.. How things unfold while holding may give you more clues...

 

I did find holding wasnt liniar, nor easy at times... waves and windows that became suddenly intense well after a cut... But again, time and slowing my taper speed helped...

 

Best wishes...