Bubbles

[Rhiannon]

Nice thing about small drops is if you feel like it's getting a bit ahead of you and you want to hold for a while, you haven't made a big drop that is still going to hit. I like your plan. You can always slow down if you need to.

 

Keep in mind that at the bottom, even though it seems like it's a tiny dose, the graph is almost a straight vertical line. I am surprised how much I feel those cuts even at tiny doses. So be sure to listen to your body.

[bubbles]

On 10/12/2019 at 2:39 PM, Rhiannon said:

Keep in mind that at the bottom, even though it seems like it's a tiny dose, the graph is almost a straight vertical line. I am surprised how much I feel those cuts even at tiny doses. So be sure to listen to your body.

Yeah, that line is a bit alarming. And too coarse to really tell what is going on. Still, it looks like it goes from 30% to 0% from about 5mg to 0mg which looks like a straight downward line to me. It was alarming when I first looked at that graph a few years ago and it remains alarming today! Or maybe is more alarming as it was somewhat academic when I was still at 50mg and now that I am in that small bit at the bottom it is more immediate. Ah well. Slow and steady wins the race. Or, at least, hopefully makes for a not-horrible race.

 

It goes to show, IMO, that a great deal more research is required on the topic of withdrawing.

[Rhiannon]

9 minutes ago, bubbles said:

 

 

It goes to show, IMO, that a great deal more research is required on the topic of withdrawing.

 

YES!

I mean, ANY would be a nice start...

[bubbles]

@Rhiannon I think there is starting to be a bit. Joanna Moncrieff did something a while ago, I think. And I'm following a Twitter chat about it - is that you on there, by the way?

[bubbles]

Bit headachy and waking too early so I'm tired. Probably the cause of the headache. Not awful but I'll take some aspirin tonight.

 

Not sure if a 2.5% drop is the cause but I was planning to.hold another 1-2 weeks anyway so will do that.

[bubbles]

Slept a bit better last night, but happy it is a weekend and I can have a siesta this afternoon.

[bubbles]

I've had a change of heart and taken another 0.1mg drop yesterday, taking me to 3.8mg.

 

[Rhiannon]

On 10/13/2019 at 6:01 PM, bubbles said:

@Rhiannon I think there is starting to be a bit. Joanna Moncrieff did something a while ago, I think. And I'm following a Twitter chat about it - is that you on there, by the way?

Probably if it's a cranky Auntie Rhi. I'm following some people talking about psych drug harm.

[Rhiannon]

6 hours ago, bubbles said:

I've had a change of heart and taken another 0.1mg drop yesterday, taking me to 3.8mg.

 

Wheeee! 🙂

 

If it gets to feeling too rough, you can always hold a while until it calms down. That's the great thing about small drops.

[bubbles]

1 hour ago, Rhiannon said:

Probably if it's a cranky Auntie Rhi. I'm following some people talking about psych drug harm.

 

I'll have another look and see if it's you. :)

 

Yes, small drops are a bit of a safety net. I have to get past the "hold" mindset, and do occasional drops. I have worked out 10% drops per month until 1.5mg, and theg going down by 0.1mg at a time for a while, and then likely it will have to be 0.1mg at a time and maybe longer holds. But overall if I do that I have two years left. 

 

 

[Rhiannon]

11 hours ago, bubbles said:

 

I'll have another look and see if it's you.

 

Yes, small drops are a bit of a safety net. I have to get past the "hold" mindset, and do occasional drops. I have worked out 10% drops per month until 1.5mg, and theg going down by 0.1mg at a time for a while, and then likely it will have to be 0.1mg at a time and maybe longer holds. But overall if I do that I have two years left. 

 

 

 

Something to think about sometime might be whether or not a calendar goal makes sense for you, especially at low doses. I have found that calendar goals, pre-scheduled timing, can get me in trouble, because I ignore warning signs and push past them because I'm focused on my plans and my numbers. I have ended up in worse withdrawal that way, and having to slow down or stop for a while, plus increased suffering, than if I had taken it more slowly to begin with.

 

At low doses, the actual med itself is not doing you as much harm as it was at higher doses. It's worth considering taking it as slow as your body needs to. There's a lot of rebuilding and remodeling going on in the nervous system, and if you don't push it too hard, I believe it's easier for those processes to keep up. 

 

I found for me that it got to a point where the withdrawal was harming me more than the low doses of the drugs themselves. 

 

Not saying this is the path for you by any means, but it's a good idea to have as many options in the toolkit as possible. You can pull them out when and if they're needed.

[bubbles]

4 hours ago, Rhiannon said:

 

Something to think about sometime might be whether or not a calendar goal makes sense for you, especially at low doses.

 

Good points. I do lots of holds and even though I've calculated two years, I don't believe it will be that short.

 

I go through stages but it is very easy for me to get stuck on a hold and find it hard to bring myself to drop again. The calendar prevents that somewhat.

 

I was thinking of the 0.1 mg drops as a more frequent rate because I'm now at the point where rounding makes the drops inconsistent. 0.4mg one month then 0.2, then 0.3. Not those doses specifically, but that sort of thing. So it seemed maybe better try to smooth those out.

 

I'm a bit nervous about below 1mg since I think that 0.1 mg may be the best I can do for increments as far as easy dosing. I guess even that will prob be okay for a few drops after that, but I'm imagining a longer hold might be necessary between drops at the lower end. Or the capsule contents sort of dissolved, made a suspension, so maybe I can do a 0.05 drop toward the end. Though that will add more time.

 

I go though stages where I'm at peace with it all but I wonder if all of this could have been behind me if I'd been a bit more disciplined about regular dropping.

 

 

 

[bubbles]

Big day today and I'm tired and have a headache. Mood is ok.

[Rhiannon]

It's hard to second guess. It's possible that without the holds you would have gotten sicker and not been able to tolerate your taper at all, who knows? Anyway, you're doing the best you can with what you have and what you know in the moment, and that's all anyone can do, I think.

 

If you make a liquid suspension, if that works with your drug, you can taper in as small increments as you need to for as far down as you need to go, because you can control how much you dilute it. That might be worth looking at for the lower doses.

[bubbles]

6 hours ago, Rhiannon said:

It's hard to second guess. It's possible that without the holds you would have gotten sicker and not been able to tolerate your taper at all, who knows? Anyway, you're doing the best you can with what you have and what you know in the moment, and that's all anyone can do, I think.

 

Yes, you're right. The whole purpose has been to allow my brain to heal from whatever the drugs have done. I wonder if longer exposure has been a net benefit or cost but there is no way to know.

 

I'm good with what I have until somewhere (just?) below 1mg, so I guess I'll shelve the pondering until then. It's a year or more away.

 

How are you doing?

 

 

[Rhiannon]

Oh, I'm chugging along. Had a couple of pretty good weeks but this past couple of days I seem to be sliding down into a so-so mood, feeling kind of frustrated and hopeless and lonely and stuck.

 

Still if that's what I get for waves, heck, compared to what I used to get, I will take it! My baseline when I feel good is really pretty good these days, and I know I'll get back to it.

 

I'm basically doing a long hold right now, except I'm very slowly reducing my diazepam to get back to where it was before I increased it in August. (Reducing less than 1% a week.)

[bubbles]

2 hours ago, Rhiannon said:

Oh, I'm chugging along. Had a couple of pretty good weeks but this past couple of days I seem to be sliding down into a so-so mood, feeling kind of frustrated and hopeless and lonely and stuck.

 

Still if that's what I get for waves, heck, compared to what I used to get, I will take it! My baseline when I feel good is really pretty good these days, and I know I'll get back to it.

 

I'm basically doing a long hold right now, except I'm very slowly reducing my diazepam to get back to where it was before I increased it in August. (Reducing less than 1% a week.)

 

Good to hear you had a good few weeks and I'm sorry to hear you're feeling a blah now. Glad to hear they're better than waves in the past though. Long holds can be really useful.

Were you the person who started that thread years ago - the slowness of slow tapers, or something like that? I sometimes think of that, as I slowly drop and hold.

 

[Guilietta]

Hello @Rhiannon and @bubbles

 

Sorry you are both feeling low and recognize that you (we all) are doing the best we can. HOlding until things improve and stabililze at that level seems the approach to take, especially when at a miniscule dosage.

 

5 hours ago, Rhiannon said:

Still if that's what I get for waves, heck, compared to what I used to get, I will take it!

 

I'm grateful for days when I am feeling well (or the new normal well). So I flow with the waves knowing that they are visiting and will go away when bored with me. 

 

Hope you are both going to feel better soon. 

 

Giuiletta

 

 

 

[bubbles]

@Guiliettatta hello. Thanks for calling by. I'll get there. How are you?

[Guilietta]

Thanks for asking!

 

Doing generally OK  - decent day yesterday and day before. Sunday was caught by bit of scary afternoon - palpitations, anxiety, compromised vision - when 40 miles away from home. 😕 Had felt fine when I left home. Feeling blah and isolated.

 

Starting 2 beads tomorrow (today I have to figure out how to do this with left handed fine work). Finally made decision to do this - after team of moderators helped me arrive at this conclusion. Met some great new people including @Emma7855 .and @AuntieBea.

 

Thankful for the good days.

[Rhiannon]

11 hours ago, bubbles said:

 

Good to hear you had a good few weeks and I'm sorry to hear you're feeling a blah now. Glad to hear they're better than waves in the past though. Long holds can be really useful.

Were you the person who started that thread years ago - the slowness of slow tapers, or something like that? I sometimes think of that, as I slowly drop and hold.

 

yep that's me, the turtle taper lady

[bubbles]

3 hours ago, Rhiannon said:

yep that's me, the turtle taper lady

Yeah, both of us.

[Emma7855]

@Guilietta 🤗

[bubbles]

Dropped today to 3.7mg. Next week will drop to 3.6mg and the following week either drop to 3.5mg or will hold on 3.6 for a bit. Will hold either way, just need to look at my numbers and how I'm feeling at the time and figure out if I should be doing another 0.1mg or not. 3.5 works out easier for capsules, but either way is okay. I'm thinking at that point a minimum of three weeks hold (two weeks for the active metabolite to work its way down to the new normal, and then a week after that).

[bubbles]

Feeling some anxiety today. Wondering if the drop yesterday was a good idea and if I should abandon it already.

[bubbles]

Well, I improved. Have had another but anxious day but generally ok. Still headachy but sleeping fine now. Will do the next microdrop of 0.1mg tomorrow as planned and that will take me to 3.6mg. The plan is rubbery in that I can make a change or not, but I measure out my meds into weekly pillboxesevery two weeks, so it's pre-measured already for tomorrow. 

 

I'd like to do another drop in another week to 3.5mg and then hold for at least two weeks. I think that works out fine keeping drops below 10% a month but will check my arithmetic before doing that.

[bubbles]

I have decided to stop at 3.6mg for a week or two. I'm ok but not sure a drop for the sake of a schedule is a good plan. I've measured out two weeks of meds at this dose (have already had one week). Will reevaluate in another week but will probably let the two weeks stand.

[Rabe]

You are hanging in there and doing SO well Bubbles!!!  Getting lower and lower!!  You are incredible!  In the process be sure to take care of you!  Love nd hugs to you Bubbles!💜

[bubbles]

Thanks Rabe. I'm doing well. Lovely to hear from you.

[bubbles]

Today is the end of the week on 3.6mg. I'm going to do next week too, and then do another couple of small drops. This pattern seems to result in imperceptible effects, so that can only be a good thing. I'll get to the point, of course, where 0.1mg is a bigger percentage than it is now, but I'm not there yet and will worry about that closer to the time. For now I'm under 10% a month.

[bubbles]

I'm going to drop to 3.5mg today, and if feeling well 3.4 and 3.3 over the following weeks. That's 10%, or rather a bit under 10%. Then I'll hold until New Year and reconsider then. These tiny, more frequent, drops seem to be the way to do it at present and it's convenient with my capsules. January will be 3.2, 3.1 and 3.0. February would still be three 0.1mg drops in a month and then March onward probably needs to start only being two 0.1mg drops. But that is too far away to be thinking too much about.

 

For now the plan is: three drops of 0.1mg at weekly intervals.

[bubbles]

Meh, I forgot my dose at bedtime. I took it this morning and will take today's at bedtime. So annoying when that happens.

[Rhiannon]

Hi Bubbles, just dropping by to say hello. It sounds like you're doing great with your taper, congratulations! 

[bubbles]

@Rhiannon

 

Thanks Rhi, plodding along.

[bubbles]

Today will drop to 3.4mg. I'm not doing very well with keeping up with my "schedule" for dropping - at the first sign of a wobble I hold another week.