Comfyquilt: Hello - issues with Benzos and new med

[Comfyquilt]

@LotusRising thank you! 

[LotusRising]

@Comfyquilt

 

How are you doing?

[Comfyquilt]

@LotusRising still not turning around, but I’ve been told to hold hold hold. I guess I am just very scared as I had quite a smooth taper. Worried I am in tolerance as my last cut was Aug.29 (was planning on cutting in Oct but then had my med mix up Oct 27). I am not feeling good at all and I am not sure if I just keep holding or taper. It’s quite a terrifying situation.  

[LotusRising]

@Comfyquilt

 

Shoot, I'm so sorry to hear that. It seemed that you were getting little windows here and there.

 

What is happening for you right now?

 

[Comfyquilt]

@LotusRising lots of fear, feeling unlike myself, no motivation, bad sleeps, inner agitation, weeping. I am still having some windows. Last night was ok and the day before was ok too. It’s just very very up and down and I’m not sure how to proceed 

[LotusRising]

@Comfyquilt

 

Are any of your symptoms getting worse? Or has the general trend been slow improvement?

 

Edited December 21, 2023 by LotusRising

[Comfyquilt]

@LotusRising it’s a real mixed bag! Some days I’m ok and others I am on the couch crying. Some of the physical stuff(insane ripping feeling in legs) is much better and hasn’t come back, but mental stuff is very up and down. 
 

In just spoke to my doctor who said maybe updose to 1.75-2mg but I am not sure I want to. I am not dying but I also feel like rubbish if that makes sense. I had a shower this morning etc, I just feel very mentally poor (icky and weird) and just very shaky too. I have no interest in TV or baking Christmas cookies (which is not like me), or eating like a feudal lord (which is unlike me too at this time of year). It’s very rock and a hard place thing to decide about! 

[LotusRising]

When you had that unintentional updose, didn't your symptoms get worse?

[Comfyquilt]

@LotusRising not during the 7 day period when I had unintentionally updosed, but after resuming my normal dose. It was 14 days later exactly. 

[LotusRising]

Right, so that's about when your body would be feeling the full effect. It does not seem to me that an updose would be helpful since your body reacted poorly to that increase. What do you think?

[Comfyquilt]

@LotusRising I think it was just such a large up and down. The symptoms started after the down, aka a too large cut. I might be too far out to correct it? I guess I am just suffering and wondering if even a 10% updose would help at all. It was like doing a 20-30% cut which I am NOT used to. Can one stabalize after such a huge up and down? 

[LotusRising]

@Comfyquilt 

 

I really wish I had a definitive answer for you! Benzos are so unpredictable!

 

It was a big updose and then an equally big cut, but since you've had such a smooth taper, I would think you could still stabilize. 

 

Have your standard cuts been 10%? I'm wondering what your body is used to ...

 

I guess if it were me, I would rather hold than updose. Alternatively, you could try doing very small cuts over time to keep the momentum going. I've seen people stabilize doing this, but there is of course no guarantee. 

 

What is your gut feel?

 

You could also ask over at Benzobuddies?

 

 

 

 

 

 

[Comfyquilt]

@LotusRising I will ask over there too! My cuts have been pretty quick in the beginning - following Ashton until 5mg and then 0.25 cuts. Over the last year I have really slowed down and have only tapered 2mg over the entire year

 

my gut is sooo unsure! Benzos are so tricky 

[LotusRising]

I know, they really are!

 

Please let me know what you decide to do!

 

I will check in regardless 💖

[Comfyquilt]

@LotusRising yes I think you really are right about being stable on the taper and holding. They said the same at BB, but if it gets unmanageable I could try an updose. I don’t think I will. I have never done an updose and with my symptoms so unpredictable I’d hate to add another variable. It seems like a bad move. I think I just have to hold and rest. 

[Hibari]

Hi @Comfyquilt

 

I know this is a rough time for you but I have faith you will stabilize again. I share that belief due to my own experience with a benzo setback that scared me so much after I had been off benzos for 15 months. I had no windows during that time but I recovered. 

 

Benzos sensitize our nervous systems so much that any changes potentially cause huge reactions, which show up as symptoms.  

You are having windows and that is a good sign. I also know how dissapointing it is when they dissappear. 

 

I support you in holding and this will pass. You are doing everything right even though you are having symptoms. Symptoms often are your body trying to stabilize. 

 

Hibari 

[Comfyquilt]

Hi @Hibari - I think I am going to have to go back to last dose I was stable at. The cut was just so so big I cannot function. It just keeps going downhill and my body is not ok. 

[Comfyquilt]

@LotusRising I think I need to do the updose. I am unable to parent or work. My psych advised it, the pharmacist advised it and my family is asking me to try it. I know I am far out for a reinstatement but I have to do something here as things are dire. I had a few good days here and there but today I cannot move. I am just trying to get through until after Christmas 

[Hibari]

I support whatever choice you make @Comfyquilt.

 

I know the pain you are in. Let me know how it goes and remember, all the choices we make in withdrawal are about trying to take care of ourselves.  You are trying to do that. 

 

Hibari 

[Comfyquilt]

@Hibari thank you. It’s not an easy decision at all as I’ve spent a year tapering that amount, but my unintentional updose and down dose has rocked me to my core. I hope this works but I must try something as I am not ok right now and have been suffering. I have spoken to my doctor, my best tapering friend, and my family and we all agree I must try this to get some relief. I must be able to parent my children. It’s a situation I am sorry I find myself in and all the members here. It’s a loss of innocence, a loss of my morality and humility, and I can’t cope in my current state much longer. I have to try to help myself a little bit right now 

[Hibari]

I get it @Comfyquilt.

 

There are many people here and on BenzoBuddies who had to updose. When they were ready, they started again. All the work you have done still counts. 

 

You'll get through this rocky phase. 

 

Hibari 

[LotusRising]

@Comfyquilt

 

I know this isn't an easy decision for you and I know you've been thinking about it long and hard.

 

I fully support and respect your decision - you have to do what's best for you and I really hope you get some relief! 💖

 

What are you thinking for an updose amount?

[Comfyquilt]

@LotusRising thank you for the kind words, I am feeling especially bad because normally I would have gone to do stuff at the school for the last day before Christmas break. My heart is broken. I was totally fine this whole taper and one stupid mistake and it came crumbling down. I felt my cuts of course but I was reasonable and measured, so I knew they would resolve. At this low of a dose it was a huge blow to take a 30% cut, my brain just could NOT do it. 
 

I was thinking of going to 2.25mg as that was about the dose I cut from ❤️

[LotusRising]

38 minutes ago, Comfyquilt said:

I was totally fine this whole taper and one stupid mistake and it came crumbling down.

 

Try to give yourself some grace here. No benefit will come of you beating yourself up - we all make these mistakes.

 

You'll get there and there will be other last days before Christmas breaks.

 

Please try to enjoy what you can of the holiday! I will be thinking of you and will check in to see how you're doing 💖

 

[Comfyquilt]

@LotusRising I have a really knack for doing it at Christmas 🥴 ah well there shall be more. 
 

Do you think an updose to 2.25mg is a good place to start 

[LotusRising]

You could do that, or you could bridge between the two.

 

But as you know, you may not feel any changes for at least a week.

[Comfyquilt]

@LotusRising yes I know it can take a moment to get to higher levels. 
 

thanks so much for your support! I hope you and your kiddos have a lovely Christmas 🎄

[LotusRising]

Best to you and yours as well!

[Comfyquilt]

Hi @LotusRising I’ve been looking back at all my notes from now and from 2021 - I think I had some vaccine issues in 2021 but I also believe I was in tolerance WD, despite my mistake this time I also think I might be in tolerance WD as well. I am wondering if the best course of action is just to start tapering again. Any ideas? 

[LotusRising]

28 minutes ago, Comfyquilt said:

I think I had some vaccine issues in 2021 but I also believe I was in tolerance WD,

 

Why do you think this? And is this when you did that updose? I don't remember all the details, but you increased at some point - is that the reason?

 

29 minutes ago, Comfyquilt said:

despite my mistake this time I also think I might be in tolerance WD as well

 

I thought you were stable prior to the last mistake?

[Comfyquilt]

@LotusRising

 

question 1 - I had tapered for many months from 5mg  at landed at 0.25mg Valium for 16 months. I felt totally fine, had the covid vaccine in late 2020 and symptoms began. Symptoms were very similar to what I am feeling now, shakiness, insomnia, depersonalization, depression, weepiness, just generally feeling terrible, sore legs, intense anxiety, chemical feeling etc. I then went back up to 15mg of Valium, in increments and stabilized. My taper has been uneventful. I have not cut my dose since Aug. 29, 2023. I have been very stable during this taper.  I did use pills for those 7 days, which was an updose, and then an unintentional cut back to 1.5 mg, but this feels shockingly similar to how I felt in 2021. I hope this makes sense. 
 

i

[Hibari]

Hi @Comfyquilt

 

Saw your post and wanted to say hi.

 

I know you are making a decision about updosing or tapering. Is it possible, no matter what direction you go, to do something incremental?

 

On 12/22/2023 at 6:39 PM, LotusRising said:

You could do that, or you could bridge between the two.

 

But as you know, you may not feel any changes for at least a week.

Like LotusRising says above about updosing? 

 

I offer you my deepest compassion and understand your need to take action. 

 

Hibari

[Comfyquilt]

Hi @Hibari I really appreciate your friendship and many kind messages over these last few weeks. Your support is immeasurable. I am pretty miserable and feel so unlike myself. It’s hard to think of anything else! 
 

I did not updose last night as I just don’t know if that’s the route I want to go. It’s very tough. I need to just remain in this awful state through Christmas so things don’t get worse. I am worried I am in tolerance Wd as mentioned above! I hope your heaps better than me xx

[LotusRising]

It sounds like you had two instances where you destabilized your nervous system, the first with the vaccine and the second just now with the mix-up. Did your symptoms settle out after the Covid vaccine?
 

It may be that you just need to hold a little longer. I’m not convinced it’s tolerance withdrawal since you had an event that initiated the symptoms in both instances. 

[Believer]

Hi @Comfyquilt,

I just wanted to share that I too was on a great taper journey/schedule until two weeks after my second Covid shot, almost three years ago. I had worse but similar symptoms to withdrawal, plus additional symptoms. I held for over a year then began tapering again. It has not been easy by any stretch, but I am seeing improvements.

 

There are many groups/YouTube’s, etc. talking about adverse reactions to the shot and many are getting put on ADs and benzos to deal with their symptoms. Many with very similar symptoms to WD. A CNS that is in chaos.

 

Hope you see some relief soon, and are able to find some joy in the Holiday.

[Comfyquilt]

Hi @Believer thank you so much for sharing this, it was in late 2020. I got very scared. Tired more meds and then went WAY back up on my Valium. It was indeed, a hard pill to swallow but I was not ok. I am feeling the same symptoms now and am scared. 
 

I often wonder if it was the vaccine (I think some of it was for sure) or if I had gone into tolerance at holding such a low dose for 16 months. It’s hard to know. My symptoms are so awful I am non functional but need to work and parent so I am feeling quite desperate ATM 😮‍💨

 

happy Christmas xx