New member in desperate need of help

[[St...]]

Hello everyone, this is my first post here. I really need some help and guidance

 

I'm currently tapering off Diazepam. I'm down to 1mg daily. I'm also on 3 * 150mg pregabalin daily and 3 * 15mg truxal daily. 

I've been tapering since October last year, and so far been experiencing the usual suspects of WD's, anxiety, nausea, chest/heart pains, blurry vision and so on.

Up until now my cuts were usually followed by 2-3 weeks of peak symptoms, followed by 1 week where things calmed down a little and I would do the next cut.

This month was the same, and a few days ago I was actually having a pretty good day, until suddenly everything started to feel like it was bouncing up and down. Like standing on a small boat in a storm at sea. Just standing or walking is very difficult and I'm very scared about what is going on. 

I've had the occasional short dizzy spells during my taper so far, but nothing like this.. It's very intense and I've been pretty much bedridden the last 3 days.

Is it normal that new and very intense symptoms like this suddenly show up?
This happened right at the tail end of what is usually a more tolerable part of my 1 month cut and hold schedule.

Any help or information would be deeply appreciated! I'm so scared that this will be the new norm for the rest of my taper

 

[[je...]]

Hi @[St...]

Welcome to BenzoBuddies!

I'm so sorry to hear about the symptoms you're experiencing. I can understand how distressing it must be. Can you please tell us what was your starting dose and how much you've been cutting each time since October? 

[[St...]]

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

Hi @[St...]

Welcome to BenzoBuddies!

I'm so sorry to hear about the symptoms you're experiencing. I can understand how distressing it must be. Can you please tell us what was your starting dose and how much you've been cutting each time since October? 

Hello, and thank you for the response!

I'm having a hard time remembering details right now, but I will do my best.

I was originally on Rivotril, I think 1-2mg daily for at least 1-2 years.. But I tapered down over a six month period like a 1 1/2 years ago. I was down to a quarter or half a 1mg pill I believe.

For the current taper I switched to 5mg Diazepam daily.

I was forced to do 50% cuts each month. I know it's way more than the recommended 10% but even tho it was very unpleasant and the first week to two of each cut were rough, it was "tolerable" all things considered..

But this sudden onset is very intense and unlike anything I've experienced so far. I know that symptoms could become more intense during the final stages of a taper, but I was not expecting something like this suddenly showing up during what so far has been my window period each month.. I was having a really good day when it happened

 

[[je...]]

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

I was originally on Rivotril, I think 1-2mg daily for at least 1-2 years.. But I tapered down over a six month period like a 1 1/2 years ago. I was down to a quarter or half a 1mg pill I believe.

For the current taper I switched to 5mg Diazepam daily.

I just want to confirm my understanding please. You tapered Rivotril down to approximately 0.5mg. You stayed at 0.5mg for a 1.5 years. Then you crossed to Diazepam 5mg in October?

[[St...]]

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

I just want to confirm my understanding please. You tapered Rivotril down to approximately 0.5mg. You stayed at 0.5mg for a 1.5 years. Then you crossed to Diazepam 5mg in October?

Yes. As far as I can remember right now.. The exact timeframe and numbers might be a little different, but in broad strokes that is the story so far.

[[je...]]

How did you do the crossover? In stages or directly? How long after the crossover did you start cutting the Diazepam?

[[St...]]

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

How did you do the crossover? In stages or directly? How long after the crossover did you start cutting the Diazepam?

I was first switched from Rivotril to Alprazolam, which I was on for like a month, but I was getting hit by bad inter dose withdrawals so after researching I insisted on switching to Diazepam. It was a direct switch and I started the taper around 3 months after I believe..

[[je...]]

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

I was first switched from Rivotril to Alprazolam, which I was on for like a month, but I was getting hit by bad inter dose withdrawals so after researching I insisted on switching to Diazepam. It was a direct switch and I started the taper around 3 months after I believe..

So this was prior to October then? I apologise for all the questions but it's really important to understand your full history in order to give you the best advice possible. 

[[St...]]

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

So this was prior to October then? I apologise for all the questions but it's really important to understand your full history in order to give you the best advice possible. 

Yes, that is correct..  I switched and had a few months before the taper began. And no need to apologize! I'm just thankful that someone is taking the time to try and help me.

[[je...]]

Based on what you've explained I think what has happened is that you've tapered too fast by making too big cuts. I know you say it was manageable up to this point but what happens is the accumulation effect. Cuts don't happen in isolation. Each cut builds on the next and your body remembers the previous cuts. It might be okay with one at most two big cuts but eventually it cannot sustain those cuts and you go into severe withdrawal. It happened to me too. And I was only making 10% cuts. The first 10% was fine but I couldn't handle the second 10%. 

If you are bedridden I think it might be best to updose to get you functional again. I personally don't believe in unnecessary suffering if there is the possibility of trying something to alleviate it. But ultimately this is your decision and your taper and we will support whatever you decide. 

I'm just wondering why you were forced to make 50% cuts? Is your prescriber not supportive?

[[kn...]]

Jelly baby's last post is exactly what happened to me.  I started tapering with a 60mg cross over to diazepam and made enormous cuts until I found BB and they warned me to slow way down.  When I reached ten mg I did slow down a bit, but still continued to stabilize enough to fool myself into thinking that I was going to be fine.  When I cut from 2.5 to 2mg it all came back to haunt me.  That was in mid August of 23 and I have been bed ridden in acute stage until recently.  I thought I could just hold at 2 and wait it out, but things never did get any better.  Thanks to the help I received here, I reinstated to 4mg and am finally starting to straighten out.  Yes, making huge cuts will get you down there quicker, but eventually you may have to pay for it.  

[[St...]]

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

Based on what you've explained I think what has happened is that you've tapered too fast by making too big cuts. I know you say it was manageable up to this point but what happens is the accumulation effect. Cuts don't happen in isolation. Each cut builds on the next and your body remembers the previous cuts. It might be okay with one at most two big cuts but eventually it cannot sustain those cuts and you go into severe withdrawal. It happened to me too. And I was only making 10% cuts. The first 10% was fine but I couldn't handle the second 10%. 

If you are bedridden I think it might be best to updose to get you functional again. I personally don't believe in unnecessary suffering if there is the possibility of trying something to alleviate it. But ultimately this is your decision and your taper and we will support whatever you decide. 

I'm just wondering why you were forced to make 50% cuts? Is your prescriber not supportive?

I was not aware that the cuts could build on each other so to speak. I thought that after each cut a new "baseline" was set :/

If I chose to updose, how much should I do? I'm currently on half a pill, so maybe 3/4 of a pill?

My prescriber wants me off them for good and insisted that this was the taper plan we were going to do..  He wouldn't budge.

However I did actually get him to agree to make my next cut smaller, but that was before any of this happened.. I'm not sure what to do. I don't think he will be very accepting or supportive

 

[[je...]]

If you updose will you have enough pills to taper? We don't want to rapid taper you again. 

[[St...]]

5 minutes ago, [[k...] said:

Jelly baby's last post is exactly what happened to me.  I started tapering with a 60mg cross over to diazepam and made enormous cuts until I found BB and they warned me to slow way down.  When I reached ten mg I did slow down a bit, but still continued to stabilize enough to fool myself into thinking that I was going to be fine.  When I cut from 2.5 to 2mg it all came back to haunt me.  That was in mid August of 23 and I have been bed ridden in acute stage until recently.  I thought I could just hold at 2 and wait it out, but things never did get any better.  Thanks to the help I received here, I reinstated to 4mg and am finally starting to straighten out.  Yes, making huge cuts will get you down there quicker, but eventually you may have to pay for it.  

Oh no.. This doesn't sound good at all 🙁 What would you suggest I do?

[[St...]]

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

If you updose will you have enough pills to taper? We don't want to rapid taper you again. 

I don't think my prescriber will let me run out of pills, but I also think he will insist on not doing any updosing. 

But as mentioned he did give me a little wiggle room recently.

Will updosing usually elivate the worst of the symptoms quickly?

[[je...]]

There are no guarantees when it comes to anything related to withdrawal but from my experience here, usually when people tapered too fast, updosing helps. It's not always an instant fix, it can take a couple of weeks to stabilize. But the only options you have is to tough it out (and symptoms might get worse- mine did over a 3 day period) or updose. When I updosed it worked fairly quickly but I've noticed I'm definitely not the norm on the forum. Most people need at minimum a couple of days to feel a difference. 

[[St...]]

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

There are no guarantees when it comes to anything related to withdrawal but from my experience here, usually when people tapered too fast, updosing helps. It's not always an instant fix, it can take a couple of weeks to stabilize. But the only options you have is to tough it out (and symptoms might get worse- mine did over a 3 day period) or updose. When I updosed it worked fairly quickly but I've noticed I'm definitely not the norm on the forum. Most people need at minimum a couple of days to feel a difference. 

Okay.. 

All this is really overwhelming and frightening. I'm scared that symptoms will get out of control and my prescriber will insist on no updosing. "just weather the storm". 

But I do need to at least be able to function a little. Right now I can't even stand up for more than a few minutes.. damnit, I don't know what to do..

I might try updosing tomorrow, just to see if it helps.

 

Thank you so much for your guidance so far.. I don't have anyone to turn to for help that understands what is happening. 

[[je...]]

I know this is scary. I was there myself. I'm sorry, but just know we understand and we know what you're going through. Will it be an option to find someone else to prescribe for you?

Anyway, if you decide to updose I suggest you go to 2mg. If I understand correctly you're at 1mg now. If it were me, I would go to 2mg (updose by 1mg) and try that for a day or two and then increase by another 1mg if it doesn't work. But please keep checking in so we can see how you're doing. 

[[St...]]

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

I know this is scary. I was there myself. I'm sorry, but just know we understand and we know what you're going through. Will it be an option to find someone else to prescribe for you?

Anyway, if you decide to updose I suggest you go to 2mg. If I understand correctly you're at 1mg now. If it were me, I would go to 2mg (updose by 1mg) and try that for a day or two and then increase by another 1mg if it doesn't work. But please keep checking in so we can see how you're doing. 

 

Thank you for the kind and supportive words.

Finding someone else is not an option. The waiting list for psychiatric help here is at least a few months. So I have to stick with my current one. 

That updose seems like a big leap backwards. If I do 2mg for a few days, will that instantly "undo" my progress? In case I'm forced to jump back down to 1mg after speaking to my prescriber?

[[je...]]

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

The waiting list for psychiatric help here is at least a few months

Many members have said that nurse practitioners are quite good in supporting and prescribing for tapers.

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

That updose seems like a big leap backwards. If I do 2mg for a few days, will that instantly "undo" my progress? In case I'm forced to jump back down to 1mg after speaking to my prescriber

If your provider is going to force you to go down again then it's best not to updose in my opinion. This will cause further unnecessary fluctuations while your body is now just trying to find an equilibrium and might make withdrawal symptoms worse. 

[[St...]]

9 minutes ago, [[j...] said:

Many members have said that nurse practitioners are quite good in supporting and prescribing for tapers.

If your provider is going to force you to go down again then it's best not to updose in my opinion. This will cause further unnecessary fluctuations while your body is now just trying to find an equilibrium and might make withdrawal symptoms worse. 

Despite my frustration with my current plan, the thought of trying to switch prescriber now seems like too much to handle. I cant even leave my home. 

My best bet is to explain the situation and hope I can reason with him. I will cite the advice I have been given here.. I mean, I can barely walk for minutes at a time. He will have to realize that this is very bad and not productive! 

I guess I will try and hold until I can speak with him on monday.

 

Thank you again for taking the time to offer guidance.. It means to world to get some support when feeling this lost. I appreciate it so much!

 

[[je...]]

If it were me, I'd probably not mention to my doctor that a bunch of strangers on the internet said I should updose. I would rather give my doctor this document below and just say that I'm very sick, I believe I've tapered too fast and I'd like to updose. You can make it clear the goal is still to come off but you just want to be functional in doing so.

https://corxconsortium.org/wp-content/uploads/Benzo-Deprescribing.pdf

[[St...]]

5 minutes ago, [[j...] said:

If it were me, I'd probably not mention to my doctor that a bunch of strangers on the internet said I should updose. I would rather give my doctor this document below and just say that I'm very sick, I believe I've tapered too fast and I'd like to updose. You can make it clear the goal is still to come off but you just want to be functional in doing so.

https://corxconsortium.org/wp-content/uploads/Benzo-Deprescribing.pdf

Thank you again.. That seems like a better idea.

Is it okay if I reply again on this thread when I have an update on my situation? 

[[je...]]

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

Thank you again.. That seems like a better idea.

Is it okay if I reply again on this thread when I have an update on my situation? 

Yes, sure.