The Long Hold Support Group

[[La...]]

Laura, I haven't researched this (I'll see if I can locate the thread that talked about this), but I heard that some probiotics can actually aggravate the GI, so you have to carefully choose ones that don't do this.  Just a thought ...

 

Thanks, Delta. We'll have to give all of this some thought. We're on the same probiotics from when she was on the SCD diet and healed her gut from the IBS/SIBO, so I think the probiotics should be okay.  We did just add the graham cracker pie crust within the past couple of weeks, so I suppose that could be a possibility. So we are stopping that.  We'll just have to think everything through. My gut sense is that this is from the w/d.  She's also been getting on/off stomach aches, not sure how severe, which scare her. But sometimes that's just from gas.   

[[Wo...]]

Could I be getting worse because I've held too long? I feel like I'm going into acute withdrawal now and the symptoms are getting worse by the day.

 

My ideas are to updose or cut.  Both of those feel super scary, of course, because I am in such a bad place.

 

The holding hasn't done anything for me and it's been 2 months.  Some people say that's not a long time to hold but it is the longest I've ever held and my body has been pretty good at stabilizing. 

 

Need some help soon.  Feeling pretty hopeless.

 

Thanks!

[[La...]]

Could I be getting worse because I've held too long? I feel like I'm going into acute withdrawal now and the symptoms are getting worse by the day.

 

My ideas are to updose or cut.  Both of those feel super scary, of course, because I am in such a bad place.

 

The holding hasn't done anything for me and it's been 2 months.  Some people say that's not a long time to hold but it is the longest I've ever held and my body has been pretty good at stabilizing. 

 

Need some help soon.  Feeling pretty hopeless.

 

Thanks!

 

WW- Sorry for all you are going through.  All I can say is that we have been holding and have definitely gotten rid of some symptoms (akathisia, tinnitus right ear, hip pain), but others have rolled in (now we are dealing with a bathroom phobia and GI issues). For us, we have no choice but to keep holding and hope things eventually settle down. 

 

 

To others here, thanks for the help, suggestions, and support from my earlier post. Crisis seems to be averted for now. Diarrhea has stopped and she's much calmer, not complaining about her stomach, and actually watching her soaps. We have immodium on hand in case we have a problem in the future. 

[[Aj...]]

I presume you have given her some rehydration salts like Dioralyte or something?

[[Su...]]

Could I be getting worse because I've held too long? I feel like I'm going into acute withdrawal now and the symptoms are getting worse by the day.

 

My ideas are to updose or cut.  Both of those feel super scary, of course, because I am in such a bad place.

 

The holding hasn't done anything for me and it's been 2 months.  Some people say that's not a long time to hold but it is the longest I've ever held and my body has been pretty good at stabilizing. 

 

Need some help soon.  Feeling pretty hopeless.

 

Thanks!

Hi WW,

I sure wish I had more experience with long holds to be able to offer some practical and experiential support.  I know that sometimes when I've been cutting too quickly that it takes awhile for the sxs to really show up and I'm wondering if that is what is happening with you.

I have read numerous times that when things are really off the rails going up may be helpful -- I've updosed a few times just a bit and that has been super helpful.

  Living with no stability for 2 months is not really sustainable so I'm betting that's an option.

 

I think that cutting when you are feeling so unstable -- and when you have been stable for most of your taper -- would be the last thing I would want to try.

 

I'm hoping that the more experienced folks chime in soon.  And I'd go back and read the propaganda page.... it has lots of inspiration.

wishing you the best, really soon!

SS

[[La...]]

I presume you have given her some rehydration salts like Dioralyte or something?

 

 

Ajusta- Oh, yes, thanks. We want to, but she won't eat or drink until 4:30.  Sorry for all you are going through.

[[Wo...]]

Thank you Laura and SS,

 

Laura, I'm glad that there has been some improvement with symptoms and sorry new ones have cropped up.  That has also been the case for me.

 

SS, I really like what you had to say and am curious about your updoses? How far did you have to go up before you felt better? I have heard that it can not work or make things harder so it's kind of a crap shoot in some ways.  And yes, it's not sustainable to be this sick for this long, I have had to quit working which happened so abruptly because I was working just fine throughout the rest of my taper.

 

My other thought is that maybe I went into acute withdrawal.  I have heard that acute is possible while still tapering.  Who knows?

 

Is the propaganda easy to find or do I just scroll through and look for it? I wish it was on a sticky post!

 

Would love to hear from other members who have more experience as well with LH and UD.

 

LOVE this group, thanks so much!

[[St...]]

Hi WW as SS and Laura have said don't continue to taper when you are so symptomatic.l have been holding 3 months and I am also going through acute withdrawal symptoms but I do believe that it will settle down given enough time. I could push through and continue to taper but if l do l will fail so I am prepared to give it as long as l need so l can get off and stay off.l have never updosed so l have no idea what you go up to.l have read that people seem to go to the last dose they felt stable on.l hope you get answers to that question soon.l hope you feel a bit more stable soon.

[[Ol...]]

Hi WW,

Valley Um just posted the propaganda and it is on page 1430! I'm so sorry you are suffering, I hope you get some relief soon. Sending love 

[[La...]]

WW- I forgot to add that I think the reason symptoms are still rolling in for us, though we have gotten rid of a number of the (including 2 hours of akathisia in the morning and 5 hours of it in the evening), is that we cut to fast earlier on and are now paying the price.  I really don't know much about updosing, but have heard mixed results, so maybe just look into it further. Also if you scroll a few pages back you should probably find the propaganda--I think it was posted within recent days, but who knows, my mind is such a blur lately. Good luck to you.

[[Aj...]]

ValleyUm I have just read your fabulous and cheering long post. Thankyou!

 

I sincerely hope that by reinstating and staying there that some of my disturbing symptoms will settle.

[[Su...]]

Thank you Laura and SS,

 

Laura, I'm glad that there has been some improvement with symptoms and sorry new ones have cropped up.  That has also been the case for me.

 

SS, I really like what you had to say and am curious about your updoses? How far did you have to go up before you felt better? I have heard that it can not work or make things harder so it's kind of a crap shoot in some ways.  And yes, it's not sustainable to be this sick for this long, I have had to quit working which happened so abruptly because I was working just fine throughout the rest of my taper.

 

My other thought is that maybe I went into acute withdrawal.  I have heard that acute is possible while still tapering.  Who knows?

 

Is the propaganda easy to find or do I just scroll through and look for it? I wish it was on a sticky post!

 

Would love to hear from other members who have more experience as well with LH and UD.

 

LOVE this group, thanks so much!

Hi WW,

There have been three or four times that I've updosed.  Usually about a day or two's worth of tapering. .. I use this descriptor of the amount as I'm tapering Xanax and you K.  different animals.

Things tended to settle quickly when I updosed, as I have chosen to do it when the misery outweighed the extra time I could foresee tapering. hey provided some much welcome relief.  They always settled things  immediately except for this last time.  Not to raise your anxiety but to be clear -- I had to updose when I tried to do a crossover to Valium, i.e. increase the Valium I was taking in an effort to be off Xanax more quickly.  Not only did the valium make me dizzy and nauseous but my CNS didn't settle until I updosed some X!  Weird I know but it happened.  I think this body doesn't like valium.

 

I learned about the idea of updosing from this thread, so hoping others will chime in.  I had read a few times:  updose to a point where you felt stable and hold.....

I won't hesitate to do it again with Xanax, but will not increase the amount of Valium I am taking ever again....

And I'm going to hold the Xanax until Sept -- that's the plan!

Hope this helps and you get some relief.

SS

[[He...]]

I did a fast taper because I’d only been using klonopin for four weeks before starting to taper.  I got down to .03mg from .5mg in a few weeks and then had an awful two days.  I updosed based on my doctors recommendation to .25mg and felt better within two days.  I was traveling with my daughter and couldn’t afford to go through major withdrawal at the time.  Looking back now I should have tried to go to .125 to see if that would offer relief before going back to .25.  Hindsight is always easier when you aren’t in the middle of suffering:)

[[NJ...]]

WW,

 

I updosed from I think .39K to .5K (which is pretty substantial), last spring about this time and then held for six months. I did the updose in two steps. I did feel much better within a few days of back up to the .5 mg and was able to function pretty much normally again. I had bad flu/bronchitis last winter and needed both antibiotics and oral steroids (twice), which really messed me up. It's depressing to think I haven't made much progress in a year but I have made progress, and that is all that matters.

I think updoses can be very helpful. I think I could have held for a year and not received the same benefit as I did from the updose. I think it is important to believe that it will work, if you second guess yourself I don't think you will see as much benefit.

 

So I started the new job this week and all is okay. Not sleeping well, still learning the ropes and not doing much, but now that I am there my stomach is much more settled than it was before I left my new job. I am gaining some hope that this is going to be okay. It is a longer commute and different hours, which I need to adjust to yet, but I really feel that I will gain better experience from this job than in any other position I have ever had. I am still not 100 percent and will continue to hold my dose for at least another few weeks, but what seemed impossible to do the last two weeks with the thought of starting someplace fresh, I did and it's okay. It's so hard to believe in yourself with all this crazy taper nonsense, but I do need to give myself more credit (and I think we all need to give ourselves more credit during this journey).

[[Su...]]

So so glad to hear the new job is working outNJ.

I figure if we can taper this stuff for this long we can anything!

Sure builds the grit!

Still such a worry before you started I know.... and understand.

Thanks for the info on updosing and holding.... always good to hear others’ experiences

SS

[[Wo...]]

Hi everyone, thank you so much for all your posts about updosing!  SS and NJ, I really appreciate that there are a couple of people here who have had success.

 

I talked to my psychiatrist. He thinks trying Gabapentin first before updosing would be best or if I updose then do a 50% updose which would be .055.  He hopes I would feel better within 72 hours with the updose.  I know a lot of people have opinions about Gabapentin.  I have yet to see anything hopeful about adding that drug so if anyone has any positive experience about it let me know.

 

I have so much anxiety and cog fog as a result of this mega wave that it's really hard for me to do anything in regards to medication decisions.  I am praying for a small enough window of reason to shine through so I can make a decision.  I like the idea of updosing, getting stable and then crossing over to a DLMT.  If I knew it would work 100% I would do it right away.

 

I am also thinking of going back to the inpatient program at the psych hospital I was in last year.  It's a really good program that involves a lot of CBT/DBT.  The staff are great and I even know a couple of the counselors there personally. It's a small hospital in Berkeley, CA so it's got a good new agey vibe like tarot cards, qi gong and adult coloring books! Because my anxiety is getting so bad and I have had such a long stretch of hopelessness I think it may be a good idea to at least get some emotional grounding.  I'm off work and being alone all day is compounding some of the issues and making depression worse. 

 

One day at a time.  I'll stay at my same dose tonight, keep praying about it and see what happens.

 

Thanks again!

 

 

[[Su...]]

Hey WW

Being alone all day with the zillion questions that a taper brings up is pretty tough! If I don’t work hard at controlling my anxiety it can get away from me... having people around really helps that I find.  If you have an opportunity to get the support of a unit and people you like it sounds good....

As does an updose a bit at a time.

I have no experience with gabapentin... does your doc? With people getting off benzodiazepines?

Wisiyou the best....

Keep us in the loop

SS

[[Ca...]]

Dose Correcting or Updosing seems to be a very personal thing, often opinions seem based on emotion as much as fact... I simply look at in its simplicity...

Withdrawals have become too much, and it has reached a point where it needs fixing... -Unless one decides to suffer it out instead.. We cant make receptors etc, heal any faster than in a functional taper with minor symptoms... My personal guess is that the body aint doing so much healing when curled up on the bathroom floor shaking, sweating, and vomiting..!!

 

We all have to decide if and how by ourselves, but others thoughts and experiences are great...

To make the good decisions that lead to a relitivly uneventful taper (just "blips"), one needs to know their own taper as it relates to them, -Throw in some informed decisions, a little conservative trial and error, good record keeping, and importantly knowledge...

 

It didnt take me long to realise that i wasnt going to get the answers to my questions that i wanted on this site (for good reason), and that it was only by following relatable tapers or situations over time, and with much thought, that I could learn to survive this crazy ordeal...

perhaps I was lucky that I had some prior brutal tapering and CT experience... but I seriously think what helped me most was hours of pondering over peoples situations and SIGs...

There is a very handy search bar function, and we can follow or read a buddies posting history...

There is an updosing support group, -if for no other reason than to compile info and experience in one place...

 

Dose correction isnt risk free... most are obvious, -we are all different..!!

But I also feel that it could be a little destabilising at a cellular level... I get the theory, but the science is above me... -But that info is on this site too...

I just try to keep any non liniar dose change to a minimum...

 

So.. How much to updose.. obviously very different for a micro taper than a chunky cut and hold...

I aim to match a steady state dose with where my bodys healing is at... and fine tune if needed (much easier with a DMT)... But I have done just fine with my Cut n Hold too...

 

Hope this helps...

 

 

 

[[He...]]

NJ- great news on the job and that your stomach has settled a bit.  My nerves have always resulted in stomach issues.  I was diagnosed with a “nervous stomach” as a kid although I was never medicated for it.  I’m thinking that was a good thing

 

WW - I do have experience using gabapentin.  It was prescribed as a preventative for migraines so I haven’t used it during my taper.  I will say that I had no problems with the medication itself although it didn’t help stop my migraines so I stopped using it.  I didn’t have any issues coming off of it.  I’m sure that I followed my doctors advice and tapered much quicker than I should have.  BUT that was a few years ago before my CNS is in the state that it is now.  I’m sure there are a number of people that are using it during their taper.  Have you posted in the “other medications” forum the check in with others?

[[Ol...]]

Cant, I find your observations very relatable! I have definitely updosed before and even though I have been cautioned against it, it has worked well for me. Any time I was cutting too fast, I would go back up to the dose that I was last semi comfortable on and then go slower from there. It worked great for me, I think. The only people that didn't think it worked were people in my life who want me to 'get better' faster and they don't really understand how the healing works. (Not that we totally understand it but at this point I would call us all Experts) I have also taken rescue doses for things like minor surgeries or even over New Years so I could go to a house party (I think my bf would have actually broken up with me if I had stayed home that night - ok maybe not REALLY but it seemed important to our well being) Anyway, I know rescue doses and updoses are not ideal but sometimes we gotta do what we gotta do.

[[be...]]

Dose Correcting or Updosing seems to be a very personal thing, often opinions seem based on emotion as much as fact... I simply look at in its simplicity...

Withdrawals have become too much, and it has reached a point where it needs fixing... -Unless one decides to suffer it out instead.. We cant make receptors etc, heal any faster than in a functional taper with minor symptoms... My personal guess is that the body aint doing so much healing when curled up on the bathroom floor shaking, sweating, and vomiting..!!

 

We all have to decide if and how by ourselves, but others thoughts and experiences are great...

To make the good decisions that lead to a relitivly uneventful taper (just "blips"), one needs to know their own taper as it relates to them, -Throw in some informed decisions, a little conservative trial and error, good record keeping, and importantly knowledge...

 

It didnt take me long to realise that i wasnt going to get the answers to my questions that i wanted on this site (for good reason), and that it was only by following relatable tapers or situations over time, and with much thought, that I could learn to survive this crazy ordeal...

perhaps I was lucky that I had some prior brutal tapering and CT experience... but I seriously think what helped me most was hours of pondering over peoples situations and SIGs...

There is a very handy search bar function, and we can follow or read a buddies posting history...

There is an updosing support group, -if for no other reason than to compile info and experience in one place...

 

Dose correction isnt risk free... most are obvious, -we are all different..!!

But I also feel that it could be a little destabilising at a cellular level... I get the theory, but the science is above me... -But that info is on this site too...

I just try to keep any non liniar dose change to a minimum...

 

So.. How much to updose.. obviously very different for a micro taper than a chunky cut and hold...

I aim to match a steady state dose with where my bodys healing is at... and fine tune if needed (much easier with a DMT)... But I have done just fine with my Cut n Hold too...

 

Hope this helps...

Excellent Post Cant. 

[[Su...]]

Dose Correcting or Updosing seems to be a very personal thing, often opinions seem based on emotion as much as fact... I simply look at in its simplicity...

Withdrawals have become too much, and it has reached a point where it needs fixing... -Unless one decides to suffer it out instead.. We cant make receptors etc, heal any faster than in a functional taper with minor symptoms... My personal guess is that the body aint doing so much healing when curled up on the bathroom floor shaking, sweating, and vomiting..!!

 

We all have to decide if and how by ourselves, but others thoughts and experiences are great...

To make the good decisions that lead to a relitivly uneventful taper (just "blips"), one needs to know their own taper as it relates to them, -Throw in some informed decisions, a little conservative trial and error, good record keeping, and importantly knowledge...

 

It didnt take me long to realise that i wasnt going to get the answers to my questions that i wanted on this site (for good reason), and that it was only by following relatable tapers or situations over time, and with much thought, that I could learn to survive this crazy ordeal...

perhaps I was lucky that I had some prior brutal tapering and CT experience... but I seriously think what helped me most was hours of pondering over peoples situations and SIGs...

There is a very handy search bar function, and we can follow or read a buddies posting history...

There is an updosing support group, -if for no other reason than to compile info and experience in one place...

 

Dose correction isnt risk free... most are obvious, -we are all different..!!

But I also feel that it could be a little destabilising at a cellular level... I get the theory, but the science is above me... -But that info is on this site too...

I just try to keep any non liniar dose change to a minimum...

 

So.. How much to updose.. obviously very different for a micro taper than a chunky cut and hold...

I aim to match a steady state dose with where my bodys healing is at... and fine tune if needed (much easier with a DMT)... But I have done just fine with my Cut n Hold too...

 

Hope this helps...

 

Cant nails the dilemma

SS

 

 

[[Ca...]]

Thanks BG, SS and Olive.. -My ??flu rambellings...

 

Olive, are u a realist too..?? Lol

 

I have written a bit about Gabapentin gpn and lyrica over the last year or so on their threads and here..

They both were a non issue pre benzos, for accident related nerve pain.. but now they do leave a foot print.. Its hard cos I use them at times, in various situations, including Helping WD.. but i dont often recommend them..

I think, if at all possible, getting stable on a current medication should take priority over adding a taper aiding medication...

But there is no one way in this game... -Whateva works is fair..!! We have to make choices throught our tapers...

 

I will shut up now.. lol

 

 

[[Ba...]]

Cant, I find your observations very relatable! I have definitely updosed before and even though I have been cautioned against it, it has worked well for me. Any time I was cutting too fast, I would go back up to the dose that I was last semi comfortable on and then go slower from there. It worked great for me, I think. The only people that didn't think it worked were people in my life who want me to 'get better' faster and they don't really understand how the healing works. (Not that we totally understand it but at this point I would call us all Experts) I have also taken rescue doses for things like minor surgeries or even over New Years so I could go to a house party (I think my bf would have actually broken up with me if I had stayed home that night - ok maybe not REALLY but it seemed important to our well being) Anyway, I know rescue doses and updoses are not ideal but sometimes we gotta do what we gotta do.

 

Olive,

I was kind of thinking that so it is interesting that you posted what you did.  Do you stay at your updose a while or drop back down the next day? 

 

It was a dream come true to actually get 5 hrs of sleep with slight updose.  And to the dentist.  And got a car battery.  And went to grocery store.  And went to yoga.

 

Oh my, it gives me hope to feel like my old self a little.  Maybe have to do that to be able to keep going...

[[Ba...]]

Dose Correcting or Updosing seems to be a very personal thing, often opinions seem based on emotion as much as fact... I simply look at in its simplicity...

Withdrawals have become too much, and it has reached a point where it needs fixing... -Unless one decides to suffer it out instead.. We cant make receptors etc, heal any faster than in a functional taper with minor symptoms... My personal guess is that the body aint doing so much healing when curled up on the bathroom floor shaking, sweating, and vomiting..!!

 

We all have to decide if and how by ourselves, but others thoughts and experiences are great...

To make the good decisions that lead to a relitivly uneventful taper (just "blips"), one needs to know their own taper as it relates to them, -Throw in some informed decisions, a little conservative trial and error, good record keeping, and importantly knowledge...

 

It didnt take me long to realise that i wasnt going to get the answers to my questions that i wanted on this site (for good reason), and that it was only by following relatable tapers or situations over time, and with much thought, that I could learn to survive this crazy ordeal...

perhaps I was lucky that I had some prior brutal tapering and CT experience... but I seriously think what helped me most was hours of pondering over peoples situations and SIGs...

There is a very handy search bar function, and we can follow or read a buddies posting history...

There is an updosing support group, -if for no other reason than to compile info and experience in one place...

 

Dose correction isnt risk free... most are obvious, -we are all different..!!

But I also feel that it could be a little destabilising at a cellular level... I get the theory, but the science is above me... -But that info is on this site too...

I just try to keep any non liniar dose change to a minimum...

 

So.. How much to updose.. obviously very different for a micro taper than a chunky cut and hold...

I aim to match a steady state dose with where my bodys healing is at... and fine tune if needed (much easier with a DMT)... But I have done just fine with my Cut n Hold too...

 

Hope this helps...

 

Cant nails the dilemma

SS

 

Don't see Cant's post but see it quoted.  Have a question.. ...There is a very handy search bar function, and we can follow or read a buddies posting history...<<

 

Uh where?  I tried to search one person's name and nothing at all came up and they have posted a lot.  So how do you do that?

 

I had no idea there was an updose group!  I always feel like I use this site incorrectly or something..  hmmm.

 

Finally, if someone is an admin or some such, is that listed after their name?  Or is there a spot to see who these folks are?

 

Sorry for a bunch of pretty lame questions..  ;O