Tapering off Diazepam - never had stable dosage

[[Pa...]]

It’s normal for our symptoms to wax and wane, we never know from one day to the next how we’re going to feel.  This leads us to some erroneous conclusions as we try to connect the dots.  Some will blame a certain food or drink for how they’re feeling when its the unpredictable nature of the drug withdrawal.  We assign reasons in our attempt to understand the unreasonable. But sometimes we have to accept there are none, its just the way it is.

The only thing I can tell you is that worrying about this will effect how you feel so I hope you can find a way to manage that worry. 

[[Ni...]]

Glad to know Im not the only one.

Was it a cut in mg, was it Loperamide, lack of sleep, stress, my underlying chronic illness etc.

 

This is a nightmare.

 

 

If I am feeling worse from the 0.5mg cut I made Saturday before I just stopped on Tuesday.

And I get worse when my body recognises that Ive stopped.

Should I start 1mg every other day for 2 weeks and then stop or just stick it out?

[[Pa...]]

7 hours ago, [[N...] said:

Should I start 1mg every other day for 2 weeks and then stop or just stick it out?

Let me ask you, if you do start 1 mg every other day for 2 weeks then stop and you feel exactly the same as you do now, what will you do then?  Because I suspect you will so its good to have a plan in place. 

[[Ni...]]

I dont know. I guess continue with the stop.

 

I really dont want to take anymore, I want to continue with the stop that I started Tuesday.

 

Im just scared that once the stop hits its going to be too much and I wont know what to do. So I wanted ask in advance.

 

Ive been suffering the worst since 31 August. I thought I was starting to get better 17 September, but started to go downhill on 19. Im now back to being at my worst, so dizzy, unable to get up, constant upset stomach.

I just want this all too stop, I cant take anything worse.

[[Pa...]]

If it would give you peace of mind to delay stopping for another two weeks then it might be a good idea to do that, maybe knowing you’ll likely face the same decision again may help you prepare for it. 

[[Ni...]]

If I'm going to feel like this in 2 weeks time whats the point in delaying.

I just cant feel worse. I dont know how I will deal.

But if the Diazepam is making me feel this bad because of withdrawal tolerance I should just keep going and get this out of my system shouldn't I?

 

Sorry I keep doing this back and forth with you.

 

1mg is a low dose, I should be ok.

But with all the talk of titration and going down 10%, thats what makes me second guess what Im doing.

[[Pa...]]

It may be time to shut out the noise and really listen to your inner voice.  Yes, some people taper all the way to zero, I believe this is more about their personality than a taper method.  Some people need to make exact reductions, others are comfortable with good enough.  Some choose a jump off point and are excited when they reach it, others are nervous. 

Which personality are you?  

[[Ni...]]

Ive been really bad since yesterday morning.

Dizziness so bad I can barely get out of bed to pee.

It was already so bad I couldn't sit up to eat and drink because after a few minutes it would reach an unbearable level. Now its that bad level just as soon as I move a cm.

A little worse and I wont be able to get up to pee.

This is terrifying.

And I have really loud tinnitus. That had previously gone down.

 

LAST DOSES

0.5mg Saturday 23 - Monday 25 September.

First day without anything Tuesday 26 September.

Edited October 1, 2023 by [Ni...]
added doses

[[Pa...]]

I’m so sorry to hear its so bad right now, can you hold on or are you thinking about going back on and tapering lower?  I hope you can hang on because I’m not convinced going back on the drug and tapering lower will help, sometimes dragging tapers out is just delaying the suffering we have to endure to be free. 

[[Ni...]]

I want to hang on.

 

Is there anyway of knowing how long it will last this bad?

 

I know everyone is different, I was just wondering if there was a rough estimate.

Or a way of working it out by how long it took to feel like this from the jump?

 

[[Pa...]]

It seems like most members describe the acute stage, when we jump as lasting around 1 to 2 weeks but as you said, it can vary and be influenced by the medication they’re discontinued.  My own lasted about 2 weeks, because I remember being able to return to work in the 3rd. 

[[Ch...]]

@[Pa...]i thought you work through the whole process?  I can’t even take 2 weeks off. 

[[Ni...]]

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

It seems like most members describe the acute stage, when we jump as lasting around 1 to 2 weeks but as you said, it can vary and be influenced by the medication they’re discontinued.  My own lasted about 2 weeks, because I remember being able to return to work in the 3rd. 

So I could feel the absolute worse that I feel right now for 1-2 weeks?

Does that start from when those symptoms start, or from when you made the jump?

 

Did your symptoms go down gradually over the 2 weeks for you to be able to go back to work at week 3?

[[Ch...]]

@[Pa...] please read some of my new threads please 

 

 

[[Pa...]]

10 minutes ago, [[C...] said:

@[Pa...]i thought you work through the whole process?  I can’t even take 2 weeks off. 

I was unable to function, I had to take leave for the first two weeks.  You will be tapering, there is a big difference between quitting cold turkey and tapering when it comes to the initial symptoms of a cold turkey.

[[Pa...]]

6 minutes ago, [[N...] said:

So I could feel the absolute worse that I feel right now for 1-2 weeks?

Does that start from when those symptoms start, or from when you made the jump?

Did your symptoms go down gradually over the 2 weeks for you to be able to go back to work at week 3?

Yes you could, but maybe you won’t, we don’t know.  My symptoms started 3 days after I stopped the drug and continued to get worse for a week but by week two, there were gradually lessening.  

[[Ni...]]

Ok.

Thank you.

Just saw you went cold turkey and didn't taper, does that make a difference in symptom severity and timing?

 

That must have been hell on you.

Thank you for talking to people like me and helping us through these times.

[[Pa...]]

You’re welcome, its difficult to speak to tapering because I don’t have experience but I’ve read a lot of posts about it. 

I believe those who quit cold turkey will suffer greater symptoms at the beginning, but things settle down and to me it felt like I was experiencing what those who taper deal with, the same waxing and waning of symptoms and the same array of them.  

[[Ni...]]

I thought you had tapered yourself, so you've obviously read alot about it.

 

I think I have been in tolerance withdrawal this whole time.

I hope how I feel now is the worst it gets and not any worse.

I also hope that it doesn't last too long at this level of severity.

Edited October 1, 2023 by [Ni...]
missing word

[[Ni...]]

Can Loperamide (Immodium) cause more severe symptoms?

 

Over the last 2 weeks my symptoms of dizziness, inability to be upright, vision problems, brainfog have been getting progressively worse every time I take it or once its left my system.

Its built up so bad Im barely able to get out of bed to go to loo.

I thought it was from my jump, but this worsening of symptoms started the week before the jump. And has just continued to build.

 

When I take Loperamide I feel drugged up and spaced out like Ive been given something for a procedure. That never used to happen.

 

 

For years Ive taken Zapain (paracetamol/codeine) on and off.

I stopped taking it altogether 10 August when I realised the interaction between them and Diazepam.

 

 

Could there be some connection here with the Diazepam, the Codeine and the Loepramide?

Apologies if this should be asked somewhere else.

 

Edited October 2, 2023 by [Ni...]

[[Pa...]]

@[Ni...], many members have noticed uncommon reactions to other medications, supplements, food and drink while going through this.  Our central nervous system is highly sensitized so its important to observe these reactions,  good for you for noticing.

I don’t know if there is a connection but an experiment to find out may be a good place to start. 

[[Ni...]]

 

I know Loperamide is an Opioid like Codeine. So I guess it could be that.

 

I know it goes for the GABA receptors in the intestines, but doesnt cross the blood brain barrier. So dont know about Diazepam.

 

Im going to stop taking Loperamide and hope that Buscopan can do the job with the constant upset stomach.

 

If the Loperamide has been having an effect I have no idea how long it will take for it to go away.

This is like some science experiment, and we are the guinea pigs.

Im currently feeling the worst Ive ever felt and am the most incapacitated Ive ever been.

I cant even be sure whats causing it and if it will get worse, better etc.

[[Pa...]]

17 minutes ago, [[N...] said:

This is like some science experiment, and we are the guinea pigs.

I’ve often said this, its frustrating that these medications have been around for so long and we have so little scientific data to help us off the drug. 

The problem with other medications is, we can check the interaction charts but this won’t take into account what effect the drug withdrawal process plays in this scenario, there are no charts which can predict that. 

 

[[Ni...]]

This exactly!

 

I dont know how much more of this I can take.

Things are so bad and I dont know how to cope anymore.

[[Ni...]]

Doctor just called.

 

I cannot make her understand how incapacitated I am.

 

She wont listen.

 

I got even worse today.

The jump?

The Loperamide (Immodium) leaving my system?

 

After this stressful phonecall Im in an even worse state. I had to hang up on her, I couldn't handle it anymore.

 

I dont know if I can keep fighting.

Edited October 3, 2023 by [Ni...]