Comfyquilt: Hello - issues with Benzos and new med

[Hibari]

You have my support @Comfyquilt

 

I needed people to support me when I was in the depths of despair due to my setback after being well for 15 months post benzos. It was such a shock to be in that painful a state. 

 

I don't think you are in tolerance, which from my understanding occurs when you have been on a consistent dose that stops working due to the body becoming adjusted to the medication and needing more to produce the same effect. It's not due to outside forces. 

 

You had a big shock to your system and your body is trying to figure it out. Painful, I know especially during the holidays. 

 

I hope you can lift any holiday pressure off yourself and just do all you can do support your nervous system. That often means waiting it out.

 

Hibari 

 

[Comfyquilt]

@LotusRising after the Covid vaccine I got very very scared, was not sleeping so more meds were introduced - pregabalin and mirtazapine. I found SA when I started these. I took pregabalin for 7 days and had horrible WD after stopping. Then could no longer sleep so I took Mirtazapine for 3 weeks and then tapered it. 
 

I was also upping my Valium in no particular way during this time. Desperate decisions are not good decisions. Symptoms feel very similar now to what they were then. I went back up 15 mg of Valium in Jan 2022, and have been tapering that since. I began tapering in March 2022 and felt good one I started reducing! I think all symptoms dissipated around July 2022. Yes I could feel my cuts but my psychological symptoms were fine and I felt like myself and was very functional. 
 

many many thanks ❤️

[Comfyquilt]

@Hibari thank you! I appreciate it so so much. I am feeling desperate at the moment, as I hate this feeling of not being ok/not being me so so much. It’s very tough, especially around Christmas and with kiddos! 
 

I am trying to not make any decisions until after Christmas as I need rest, but that’s also hard when you are feeling dire.  I had a small window last night. 

[Comfyquilt]

@LotusRising I just worry about tolerance as I had held on that 0.25 mg of Valium from Nov 23, 2019 until Nov 30 2021. Symptoms similar to my Ativan CT began roughly 2 weeks post vaccine. I have been holding my current dose since Aug 29, 2023 (1.5mg) and again these feel very similar to that Ativan CT. This is where my worry about tolerance Wd comes from, as it feels shocking similar to that CT 

[Hibari]

Hang on to those windows. 

 

Hibari

[Comfyquilt]

@LotusRising I am wondering if maybe this is the result of tapering too quickly and now it’s catching up. I did follow Ashton in the beginning, but I realize now it may have been too fast? But I did feel my cuts and would wait until they had passed to resume the taper. I did this in two week increments. I then got to 6mg and began to remove 0.5 of a mg. After 5 mg I began to remove 0.25 of a mg. 

[Comfyquilt]

@Hibari ❤️❤️❤️

[LotusRising]

It really sounds to me like things went sideways with the mix-up. If it were tolerance, I suspect you would have already been getting WD symptoms prior to taking the pills.

 

And if it's a case of your cuts catching up, then holding is still your best option. Though it does sound like you've been careful to wait for symptoms to pass before reducing again.

 

I know I've asked you this already, but just to confirm, you were feeling stable prior to taking the pills for that week, correct?

[Comfyquilt]

@LotusRising yes very! I was working and just being me! Felt 200% normal and functional. It was exactly 14 days after stopping the pills that these symptoms began. Oct 27-Nov 3 I took the pills. Nov 16 symptoms began. 
 

My tapering in 2023: 

Jan 15 2023 - 2.75 

Feb 11 2023- 2.5 

March 10 2023 - 2.25 

May 11 2023- 2 

July 14 2033- 1.75 

Aug 29 2023 - 1.5 

 

pill weight should have been 0.040g and it was anywhere from 0.055 to 0.060g whilst I was taking the pills. Sure wish I would have remembered the scale I had from the Mirtazapine taper when I was breaking the pills up. 
 

thank you so much for your help @LotusRising it’s been invaluable ❤️

[LotusRising]

@Comfyquilt

 

I'm sorry, I know this is one of the worst times to be going through all of this 🙁 

 

And it looks like you've been so careful and thoughtful in your approach.

 

How are you feeling? Are you still planning to wait until after Christmas to make a decision about what to do from here?

[Comfyquilt]

@LotusRising it’s the worst time to be going through this and I just have no idea what to do. I feel very dire if that makes any sense. I have been waking up with this awful toxic dread that sits in my neck and shoulders, it’s so incredibly toxic feeling. It feels like I am being poisoned by Valium.  I’m just not sure what to do with myself as the symptoms have been changing so much over the last 6 weeks. It’s just been one awful replaced by another. I feel like it’s such a rock and hard place. My sleep keeps getting worse and worse which is scary as well. 
 

I wish I knew what the right decision was, do I hold? Do I updose? Do I taper? It’s all very complicated and after such a normal taper I am feeling pretty down. I keep reminding myself I am in WD but sometimes that dosent work and emotions take over. Yes I think I just need to get through today and tomorrow, and then take it from there. I seem to have all the luck as this happened at Christmas in 2018 and 2021 😮‍💨 as well. 
 

I am very open to any ideas on how to proceed. Thank you again for your support during this process. It is invaluable ✨

[LotusRising]

@Comfyquilt

 

1 hour ago, Comfyquilt said:

it’s the worst time to be going through this and I just have no idea what to do.

 

I can absolutely relate and I'm so sorry this is all happening right now. 

 

I wish I knew the right decision for you, but my only feeling is that you need to continue holding. Have you read any info from Chris Paige? I believe he is a proponent of holding to stabilize. I know some of the benzo coaching stuff can be triggering, but it might help?

 

1 hour ago, Comfyquilt said:

Yes I think I just need to get through today and tomorrow, and then take it from there.

 

I think this is definitely the right mindset. There is no harm in holding for a few more days. As for getting through the next few days, what is happening in your world? Do you have plans, can you get outside and do Christmas activities that might help you distract, at least temporarily, from the symptoms? 

[Comfyquilt]

@LotusRising I have seen Chris Paige last week and he has advised a hold. Everyone has advised a hold 😮‍💨 it just feels so bad to do nothing when I am feeling so bad. It’s hard not to be hasty. I am really upset with myself over this and cannot believe I made this mistake as I did such a good job tapering. 
 

I just worry about tolerance with the benzo but that might just be fear talking, as when I take it at night I do get a slight slight reprieve. It just seems to make me feel so so icky in the morning. It’s hard not to be functional. 
 

I am going to try and move from the couch today and do some Christmas things. We are going to my mom’s for dinner and I am going to try to be with kids today. I hate feeling like I am just surviving as I am normally a very upbeat gal! This is really hard right now and just thought after 6 weeks I would have stabilized, but alas I have not. Holding is the ultimate test of patience. 

I will check back in after Christmas, thank you so much again for all your help. I hope your Christmas is joyous and filled with love 🎄💖

[Comfyquilt]

Hi @LotusRising

 

i had a window on Xmas Eve (not perfect but not so dire) and Christmas Day was not horrible either. I was able to cook and do a few things! I did not feel dire or desperate most of the day. 
 

My main issue right now is my sleep has seemed to have tanked. I feel quite numb and flat as well. I am going to bed at 10 (I take Valium at this time 1.5mg) and I wake up at 3:30am everyday. I guess I am also worried I have been on benzos for 4.5 years now, with most of that time spent tapering 😮‍💨 it just seems like there is not a way out of this mess I’ve created. I’m still holding and have not updosed, but maybe will need to taper a little in the new year as my state right now is not sustainable long term. 

[Hibari]

Hi @Comfyquilt

 

I see that you had a small window and were functional on Christmas day. 

 

I know it's not where you want to be but still good signs that your body is trying to get in balance. 

 

Sleep does get rocky during waves but it will even out. 

 

I think you'll have more information right after New Years and then can decide on next steps. 

 

I know how hard it is to hold when you are not feeling well but it seems like it is paying off with your small windows. 

 

You'll get there. 

 

Hibari 

[Comfyquilt]

@Hibari I really appreciate your kind words. Lots of big feelings here today. Thank you so much for the kindness through this. It’s just so hard to go from fully stable and functional to terrified and weeping with no sense of self in a matter of days. I feel like looking back I’ve made so many mistakes. I stayed on a very low dose of Valium for 2 years when I should have just jumped off. This brings my total time on benzos to 5 years which is a LONG time and something I never planned to have happen. Trying to just remain calm today. My mom is here with me and is cleaning my kitchen and being so supportive. For that I am grateful 

[Hibari]

@Comfyquilt

 

I truly understand what you are going through as I experienced my own version when I had my setback. Fully functional and thriving to being bedridden. 

 

Try as much as you can to not blame yourself for what you are going through or for choices made in the past. We all did what we thought was right at the time. We are human. 

I was never harder on myself than I was in my setback. My emotions were all over the place and extremely negative and fearful. All due to  a temporary brain injury and stressed nervous system. 

 

Right now, your brain is not seeing things clearly due to the wave. 

When you feel better, and you will, you'll regain perspective.

 

I'm glad your mom is with you. 

 

Hibari 

[Comfyquilt]

@Hibari thank you ❤️ I’m sorry you felt similar, it’s not something I’d wish on anyone. My sleep is not great and that makes everything else seem very bad. One day at time around here 

[Comfyquilt]

Just adding here for my future reading. Although today was not great, I am having a good window tonight. It started around 3pm. That makes almost 3 days with windows now. 

[LotusRising]

@Comfyquilt

 

This is so good to hear  

 

Three days in a row with windows is definitely a good trend. 

[Comfyquilt]

Thanks @LotusRising! Sleep is still very weird and iffy and feels very drugged if that makes sense. Lots is wake ups with weird dreams and going right into REM sleep. 

[LotusRising]

@Comfyquilt

 

Yes, I can totally relate. I lost my deep sleep for quite a while and it's still a little hit or miss, but I'm also dealing with some hormonal changes. Do you do all the sleep hygiene things? I've found even just short morning walks seem to help quite a bit with keeping things somewhat regulated.

 

Aside from the WD symptoms, did you have a nice Christmas?

[Comfyquilt]

@LotusRising yes I do them all lol! Sometimes it just does not help. I’m just really hoping for stabilization. I still feel very icky but have had some windows.
 

I was able to do some stuff on Christmas! I felt brain dead but was able to do a little cooking. I hope you had a nice Christmas too ✨ 

[Comfyquilt]

@LotusRising do you think it will be possible to stabilize here? I read some of @Rhiannon posts and she mentioned it was very hard to stabilize when a taper goes wrong with benzos. Just feeling nervous about that, thanks! 

[LotusRising]

2 hours ago, Comfyquilt said:

Sometimes it just does not help.

Yes, I know what you mean! This chemical stuff overtakes everything else doesn't it? For consistency, I just kept doing it even when I didn't feel like it was helping because I figured eventually it would pay off. 

 

1 hour ago, Comfyquilt said:

do you think it will be possible to stabilize here?

I do think it's possible to stabilize to a certain extent. I honestly don't know if you'll get back to how you were before, but I certainly think you can be more functional. It seems like this is already starting to happen? I have spoken with other individuals that had setbacks and slowly stabilized over time, even while making teeny tiny cuts. Unfortunately, we are all so different, which makes it's difficult to know what will happen in your specific situation.

 

Are you still feeling like you want to continue holding?

[Comfyquilt]

@LotusRising I am at a loss a little bit. I worry I’ve tapered too fast and this might be the “lag time” catching up, I also have a more complicated history with benzos due to a cold Turkey, and then another updose back in 2021. It seems for folks like me this may not be as linear. I am very confused about what caused this setback. I keep going back to the pill updose but maybe I was heading for a crash with my too fast taper from 2021-2022. I keep thinking I might stabilize but then I realize it’s been nearly 8 weeks of holding with little to no resolve, I just don’t know how long I can keep up with this.  
 

I am feeling rather scared and vulnerable and maybe that I am benzo horror story at this point. Throughout the taper I did feel well and thought I was doing a good job, but perhaps it caught up with me? There are just so many variables and I am really not sure what to do. 
 

I think I am now too far out for an updose so my route would be to keep on holding, or continue my taper. Both seems scary and I’m not sure what to do. 

[Comfyquilt]

@LotusRising I also read this from

Rhiannon. 
 

 

Some people do become destabilized during a benzo taper and seem unable to stabilize even if they slow down or hold, but in my experience those people invariably had complex prior histories, including excessively rapid tapers or CTs/reinstatements, and often other meds involved and various switching of meds, etc.

 

This phenomenon is something I did observe over and over, and I called them "unstable tapers." Benzos are characteristically difficult in this regard. It can take years to stabilize once destabilized by a benzo CT or harsh taper. 

 

This worries me as I fit this description well. 

[LotusRising]

@Comfyquilt

 

Yes, I understand. I really do ❤️

 

I want to reassure you that regardless of your situation, it's still very possible to get through this. 

 

33 minutes ago, Comfyquilt said:

I worry I’ve tapered too fast and this might be the “lag time” catching up

 

I don't think this is what happened since you were stable and had held for a year.

 

I would agree that it can be hard to come back from a destabilization, but this doesn't mean it can't happen. I was speaking with another individual recently who upset their taper, and while they haven't gone back to their original baseline, they have stabilized enough to resume their taper and remain functional. I really think you can, and will, do this. 

 

I remember reading all this stuff too and it made me really fearful, but the strength to get through really does come when it's needed. 

 

40 minutes ago, Comfyquilt said:

maybe I was heading for a crash with my too fast taper from 2021-2022

 

So, in reference to your above comment, I just reviewed what you posted previously about your taper,

On 12/23/2023 at 11:38 PM, Comfyquilt said:

Jan 15 2023 - 2.75 

Feb 11 2023- 2.5 

March 10 2023 - 2.25 

May 11 2023- 2 

July 14 2033- 1.75 

Aug 29 2023 - 1.5 

 

Looks like you started reductions at 9%, then that slowly increased as you got lower. You also held a little longer between some reductions and I believe you mentioned symptoms settled out before reducing again, is that right? If this is the case, I have a hard time believing your current symptoms are because you went too fast. Of course, I don't know this with absolute certainty. 

 

Are you still trying to weight out whether or not to updose?

 

[Comfyquilt]

@LotusRising yes still trying to decide what to do. I’m so conflicted. I don’t know if I should creep back up a little, keep holding (felt good last night minus sleep) or continue with micro cuts 
 

This is my entire taper:

 

March 1 2022- 14.75 mg

March 12 2022- 14.25

March 25 2022- 13.75 

April 12 2022- 13.25

April 23 2022- 12.75

May 4 2022- 12

May 15 2022- 11

May 25 2022- 10.5 

June 3 2022- 10

June 13 2022- 9 

June 23 2022- 8 

July 3 2022- 7 

July 13 2022- 6

July 26 2022- 5.5 

Aug 10 2022- 5

Aug 28 2022- 4.5 

Sept 10 2022- 4

Sept 26 2022- 3.75 

Oct 13 2022- 3.5 

Nov 4 2022- 3.25

Nov 25 2022 - 3 

Jan 15 2023 - 2.75 

Feb 11 2023- 2.5 

March 10 2023 - 2.25 

May 11 2023- 2 

July 14 2033- 1.75 

Aug 29 2023 - 1.5 

 

I was completely stable the whole way down. Working, parenting, sleeping, - doing my life as one would. I would feel the cut after about 5 days and then be fine. If I didn’t  feel good I would hold a little longer. But that was rare as I did feel great minus around day 5 when I felt symptoms. I would then hold another 5 days to ensure I returned to baseline. Symptoms always resolved and then I continued. I know I felt ok because I stopped checking in here and stopped keeping a detailed daily log after around June 2022. 

[LotusRising]

If it were me, I wouldn’t updose. People seem to have such mixed responses when updosing a benzo. You’ve been at your current dose now for over a month now right?

 

 What symptoms are you having right now? Do they follow any kind of pattern?

[Comfyquilt]

@LotusRising it’s strange. They don’t seem to follow any pattern. Some days I feel like “I can do this” and others not so much. I don’t have the crippling depersonalization I had in 2021 but lots of other symptoms. Very weepy, feeling hopeless and doomed,scared, speedy feeling at times, blank brain at times, freezing cold, ripping feelings in my body,  my legs feel very strange, inner agitation and restlessness, despair, loss of appetite, no drive, apathy, burning skin, insomnia, horrible cortisol wake ups, discomfort in my own body, no ability to plan, no ability to clean my house, and generally just awful! 
 

Yes, I corrected my dose Nov 3 and symptoms began Nov 16. So it been nearly 2 months at the correct dose, with 5.5 weeks of symptoms. Some days are fine, and others are just wicked. 
 

As I am writing this mentally I feel kinda ok, scared but ok but my physical symptoms are really acting up! When I did go CT in 2018 and after the vaccine I had mostly mental symptoms. 

[LotusRising]

14 hours ago, Comfyquilt said:

When I did go CT in 2018 and after the vaccine I had mostly mental symptoms. 

Right, yes, I also remember you mentioning that your symptoms were primarily mental, while mine were almost all physical.

 

I do also wonder if some of your symptoms are related to being lower in your dose. For some, it can get more difficult at lower doses, so when you do resume your taper, it might make sense to make smaller cuts. Perhaps just 5% cuts?

 

How was your might last night?

[Comfyquilt]

Hi @LotusRising I felt quite good last night! I was mentally ok and physically as well. I am just scared about all of this, and how to proceed. I just don’t want to make things worse etc. 

 

my sleep isn’t the best and I wake around 3:30 in sheer panic, covered in sweat and then toss and turn until 6. I call them terror mornings. It’s hard to come down after that. My husband says I’m no where near as bad as 2021 and this seems to him that I am just in benzo Wd minus also having a mental health crises. I don’t want to updose, I’ve decided that, that is not an option. It’s hold or taper. I’ve been holding now for 7 weeks with lots of ups and down. I wonder if a small taper would help? 

[LotusRising]

You could test the waters with a very small taper, maybe only 2%?

 

But, if you do decide to do this, I would definitely wait it out for two weeks to feel the full effect. 

[Comfyquilt]

@LotusRising yes I think I will try this, maybe after next week. I just want to make sure I have some kinda stability as it’s just been a rollercoaster. I think I will aim to taper Jan 6 as that will be roughly 8 weeks since my dose mix up 

[Hibari]

Hi @Comfyquilt

 

I agree with the guidance that @LotusRising is offering you in terms of holding and then a small cut, if you want. 

 

In terms of cutting, I share my own experience. When I started Mirtazapine during my setback, because I was so ill and not sleeping, I tried a few different doses ranging from 1.75, 3.75, 5mgs etc.  When I settled on 7.5mgs, my body could not take it, it was too much for my sensitized nervous system. I couldn't sleep and was up all night. I started tapering after about 2 weeks on that dose. 

 

It wasn't until I got into the 5mgs that the medication stopped revving me up. I was able to get some sleep and as I continued my taper, I felt better. 

 

I offer this because your body may be finding your old dose of 1.5 too high at this point. Making a small cut may offer your nervous system relief. 

 

Also, try not to focus too much on other people's statements. While there is a depth of knowledge on this site, your journey is your own. I was pollydrugged, on benzos twice and had a setback. I'm in a very good mental state at this time and about to step off the Mirtazapine. 

 

Trust that you were very stable for the past year of your taper. That is evidence that you were not going to fast. From my perspective, if you were going too fast, the cuts would have shown up during that year. 

 

You will get through this. 

 

Hibari