The Long Hold Support Group

[[be...]]

[glow=red,2,300]"Welcome Pooky"[/glow] Hi, this is a great group of buddies and we all have been where you are and yes things can be dicey, but also you can be Functional throughout this also. Please know that you are not alone and that having some great buddies walking silently beside you does help. I do not cut if I feel bad, but honestly I have being doing well, but if I was feeling bad I would stay put honestly time means nothing to me I want to stay functional. Stay Strong. 

[[kr...]]

glad to find this group! I need some reassurance.  i see dr today hope i hear back...Any of you have light periods like almost all month? im 51 and im always told its menopause. i had my gyno visit last fall.

During my taper and a few months after i had no periods. Then a big one  and irregular over summer. over winter basically spotting almost everyday w breaks here and there.

I tried proges cream from store during winter but last 2 mo been anxious and i quit that. Still been anxious bouts of no sleep and i have to think its all stress ive been feeling about getting ready for rental season and my bf coming back from FL. i thought i was turing the corner this winter, in gym everyday, and last 2 mo have been so rough

anyway i see dr later today for follow up w my bloodwork and im really nervous. checking vit d b6 b12 iron (cbc) and also dhea. I dont think shes convinced i could still be having the so called waves. shes wondering about my adrenals. I dont mind the spotting ill ride it out i just want to know its nothing serious! so nervous!

[[Va...]]

I'd like to join this thread

I feel like I'm pretty new to this tapering thing.  You can see my sig.  I c/o to valium and thought I was going insanely slow.  I was feeling ok and decided to cut .07 in stead of .02 and BAM.  I immediately updated to the previous spot and held for 23 days and symptoms kept getting worse not better.  I'm a mom of to young kids so I updosed 1/2 mg to my original v starting dosed 2 days ago.  Now I have to wait to see if that works because the v takes about 7 days to work on me.  If it works Im going to hold for at least a month.  If it doesn't work I will still need to hold I think.

In holding do symptoms sometimes get worse before they get better?

Do the long holders cut when feeling symptoms still or do you wait to feel good?

Thanks

Hi pooky. My experience is that sxs definitely got worse as I held before they got better. The nonlinear process also makes it difficult as improvement is subtle and slow. I don't cut unless my sxs are very minimal or nonexistent. I haven't had to worry too much though as I have been doing well cutting very slowly and have almost no sxs at all.  --V

[[Ca...]]

Hello fellow strugglers:

Wanted to give a brief update: my incredible stomach pain (and headache, and fatigue) turned out to be shingles. The blisters started Monday night and are now (according to my doc) fully blooming: the pain is not too bad really, and I may luck out with a light case...just goes to show that not everything is withdrawal. I was sorely tempted to take a bigger dose of V the night I figured this out, cause I was depressed and discouraged, not gonna lie. But I didn't....hope everybody is well.

[[Va...]]

Hello fellow strugglers:

Wanted to give a brief update: my incredible stomach pain (and headache, and fatigue) turned out to be shingles. The blisters started Monday night and are now (according to my doc) fully blooming: the pain is not too bad really, and I may luck out with a light case...just goes to show that not everything is withdrawal. I was sorely tempted to take a bigger dose of V the night I figured this out, cause I was depressed and discouraged, not gonna lie. But I didn't....hope everybody is well.

Sorry about the shingles Cally. I've had them and know how nasty they can be. I hope they resolve quickly.  --V

[[ly...]]

 

Hi pooky,

 

Last year when I was holding I had a new symptom come on at 5 weeks.  This reinforced my need to hold longer.  My taper has been pretty smooth over the past year but I do have some symptoms.  They are fairly minimal and mostly unnoticed if I'm busy doing something.  I was out all day today and didn't even think about my taper and didn't have symptoms that I was aware of.  I often have some amount of tinnitus and tingling in my lower legs and feet.  I think these two may be around for awhile after I'm off.  I have a few others that ramp up in the days after a cut and then go away.  I wait until things are pretty minimal before I cut again.

 

I've had a couple of long holds - 8 months the first year and 4 months last year.  I had cut way too fast and it took a good long time before I was feeling good.

[[Ki...]]

MiYu I think noise seems to be one of the biggest nerve janglers out there. I notice a lot of people ( myself included) alternate between being annoyed more by sounds than visual stuff sometimes and other times its the other way around. Hopefully you will get relief from it soon!

[[Ca...]]

 

 

"Sorry about the shingles Cally. I've had them and know how nasty they can be. I hope they resolve quickly.  --V"

 

- thanks V if they don't get any worse than this I will be ok - did you have any post-Shingles nerve pain??

 

 

[[be...]]

Hello fellow strugglers:

Wanted to give a brief update: my incredible stomach pain (and headache, and fatigue) turned out to be shingles. The blisters started Monday night and are now (according to my doc) fully blooming: the pain is not too bad really, and I may luck out with a light case...just goes to show that not everything is withdrawal. I was sorely tempted to take a bigger dose of V the night I figured this out, cause I was depressed and discouraged, not gonna lie. But I didn't....hope everybody is well.

Cally so true everything is not wd, hope you are not in too much pain, hopefully it will resolve quickly and you will feel better. Have some of the other fears about health resolved somewhat for you. As I said before you will know when you need to be checked. Stay Strong.  

[[Va...]]

 

 

"Sorry about the shingles Cally. I've had them and know how nasty they can be. I hope they resolve quickly.  --V"

 

- thanks V if they don't get any worse than this I will be ok - did you have any post-Shingles nerve pain??

I didn't have any pain once they cleared up. I was only 17 years old when I had them.  --V

[[Ca...]]

As soon as I could tell it was Shingles I relaxed a bit - because I had Lyme so bad for so long I freak out when I have to be bed-bound for any length of time, and thinking that might happen with this was almost too much. And the shingles makes my little bit of residual nerve pain worse as well. But I think I am spared the horrible pain so many people have to endure, and I managed to get through work today...if I can keep on my feet, stay connected to my world, and not updose I can keep going...

[[be...]]

As soon as I could tell it was Shingles I relaxed a bit - because I had Lyme so bad for so long I freak out when I have to be bed-bound for any length of time, and thinking that might happen with this was almost too much. And the shingles makes my little bit of residual nerve pain worse as well. But I think I am spared the horrible pain so many people have to endure, and I managed to get through work today...if I can keep on my feet, stay connected to my world, and not updose I can keep going...

:thumbsup:

[[...]]

you'll get there MiYu. Keep the faith.  . I take 2 grams of niacin and 1 gram of niacinimide each day. I have noticed that it helps t

 

Thanks Valley for your encouragement 

Hi M regardless of all the crap that's going on I felt I was on the up yesterday only to be plunged back into super hell again today and each time feels a LOT worse than the last time, but is it or is it just our perception as we feel so awful most of the time, that when we do get a break its immense relief and unbelievable we can go backwards BIG time again and again?

 

I hope all for us that need to stabilise get there soon but remember that these windows and waves patterns as shitty as they are are totally normal, and a sign we're still  destabilised and not the drug. It was cutting the drug down that caused it not taking the drug, I was in'' true tolerance withdrawal'' for year's on my FULL prescribed dose not the ''myth' about holding while tapering

 

And even that was no where near as bad or drawn out symptom wise as my hell withdrwal from making cuts that caught up with me so badly and being advised to cut too soon and not doing long enough holds no matter how long I had to hold for. Go look at peole who have been off for ages going though this you can't say ''its the drug''  or ''its tolerance''after being off it for for many months or years can you? ITS LACK OF THE DRUG THAT CAUSED IT!!! :D ..  Their still destabilised and I noticed the same pattern over and over a too rapid taper or early jump or not holding long enough, or upodosing reinstating and not holding long enough. Anyway I'm off as I'm feeling really terrible right now   

 

:hug: to everyone.

 

 

Love Nova xxx :smitten:

 

Hi M regardless of all the crap that's going on I felt I was on the up yesterday only to be plunged back into super hell again today and each time feels a LOT worse than the last time, but is it or is it just our perception as we feel so awful most of the time, that when we do get a break its immense relief and unbelievable we can go backwards BIG time again and again?

 

I hope all for us that need to stabilise get there soon but remember that these windows and waves patterns as shitty as they are are totally normal, and a sign we're still  destabilised and not the drug. It was cutting the drug down that caused it not taking the drug, I was in'' true tolerance withdrawal'' for year's on my FULL prescribed dose not the ''myth' about holding while tapering

 

And even that was no where near as bad or drawn out symptom wise as my hell withdrwal from making cuts that caught up with me so badly and being advised to cut too soon and not doing long enough holds no matter how long I had to hold for. Go look at peole who have been off for ages going though this you can't say ''its the drug''  or ''its tolerance''after being off it for for many months or years can you? ITS LACK OF THE DRUG THAT CAUSED IT!!! :D ..  Their still destabilised and I noticed the same pattern over and over a too rapid taper or early jump or not holding long enough, or upodosing reinstating and not holding long enough. Anyway I'm off as I'm feeling really terrible right now 

 

:hug: to everyone.

 

 

Love Nova xxx :smitten:

 

Hi Nova 

Thank you as always for your wisdom  :hug:

I'm sorry you are back in hell 

But glad you had a little 'up'. That's some thing eh? I know its not much in the midst of so much suffering.

So , help me out a bit here.... You were in tolerance WD during your long years on the benzos?

I get the tolerance part, and the WDs when your body is asking for more of the drug to work.

But once we start tapering ....at what point do we know that we have held long enough , how do we know we haven't become 'tolerant ' .

Benzo brain is acting a bit confused , again! 

 

I'm having a lot of anxiety , yuck , the worst.... Mind says ' this journey is going to be hellish whatever you do ' , and I then feel like I can't do this....can't go through this. What if I don't stabilize etc.

 

Just needed to say it... It always helps coming here and seeing other buddies succeeding in their tapers with going slow and holding when needed. Im still In fear mode about tapering . I guess because I'm still having so much difficulty I'm afraid I'll never stabilize , and then it can only get worse.

 

Anxious mind speaking , afraid I'll never heal ..... I know we've all been there .....

 

I really hope all of those of us struggling will find our way with ease , and soon .

 

Love to all,

MiYu  :hug:

[[ga...]]

As soon as I could tell it was Shingles I relaxed a bit - because I had Lyme so bad for so long I freak out when I have to be bed-bound for any length of time, and thinking that might happen with this was almost too much. And the shingles makes my little bit of residual nerve pain worse as well. But I think I am spared the horrible pain so many people have to endure, and I managed to get through work today...if I can keep on my feet, stay connected to my world, and not updose I can keep going...

:thumbsup:

 

Good for you, Cally! I think you will be fine. My dad had them and recovered completely. I hope yours clear up quickly and completely, too.

[[...]]

Wow, Miyu, I'm impressed! A raw foods chef! Perhaps you should be in charge of the dinner at Cant's place.

 

 

 

Heath, you're bringing the bath suits, huh? I'll have something like this.

width=500 height=392https://4.bp.blogspot.com/-1I4nE6P13tQ/UPps7DP3TAI/AAAAAAACRnc/_mjHb_uDXZg/s1600/37+Women+in+bathing+suits+on+Collaroy+Beach,+1908,++photographed+by+Colin+Caird.jpg[/img]

 

 

Seems Cookie wants to come, too.

 

Love the pic Gard 

Id be happy to take charge of the menu and food at our big party at Cant's place! All tastes taken into account

 

love your comment Cant on the turtle sandwiches, you're a funny guy!

hope you are hanging in there 

 

 

love to all , Miyu

 

 

[[...]]

MiYu I think noise seems to be one of the biggest nerve janglers out there. I notice a lot of people ( myself included) alternate between being annoyed more by sounds than visual stuff sometimes and other times its the other way around. Hopefully you will get relief from it soon!

 

THanks Kitty

At least with sight you have the option to close your eyes!

Earplugs don't really touch noise, and who wants to wear ear plugs during the day anyway!

made it through today , and its lovely and quiet now, they've gone home.

One more day and then a long weekend of peace I hope

Miyu

[[He...]]

Hey Calle.

I had the shingles twice! It was pretty rare  to get it twice, but a blood test confirmed it.

Doc gave me Valtrex to get it through my system quickly and keep the effects mild. I only had a small rash and pretty bad fback back pain.

I recovered completely both times with no residual effects at all. I think you will be fine.

 

Feel better!

[[...]]

Hi MiYu, I agree with the noise issues. I've always been noise sensitive too. I have trouble when people are eating around me and that started when I was a teenager. I know it's an actual thing and has a name but I don't remember what it's called. We just recently moved to the city and the noise is so much more than anything I've ever experienced. Not good since I have always been noise sensitive, now with withdrawal....yikes. We'll get through it anyway. I have a friend who suggested musician earplugs. She said it blocks out some of the noise but you can still hear just at a lower level. So I guess if we were at a rock concert it would sound like loud music but not blasting loud.

 

Hi Pooky, I'm so glad you came to join us here on the long hold thread. I hope you find the help and support you are looking for here. I think these people are amazing.

 

Cally, I'm so sorry to hear about the shingles. I hope that it remains a small outbreak and heals quickly without any residual nerve pain.

 

Heath, my kids are grown too. You are right, the bigger the kids the bigger the problems. I hope they land safely. Right now mine are both doing pretty good but you never know what crisis is around the corner!

 

I had a pretty good day today. I had mostly physical symptoms. Lots of pain in my abdomen. I'm hoping it will be gone tomorrow. This holding is really starting to work it's magic! I was actually able to clean my bathroom for the first time in a year!! I actually don't like to clean but I was so excited that I was able to So grateful to my husband and daughter for keeping the house clean. Before today just the thought of cleaning was overwhelming and made my anxiety shoot through the roof. Today I cleaned the whole bathroom without a twinge of anxiety. I'm nowhere near done with this tapering but I'm hoping to do it slowly enough to stay first get back to being functional and then stay functional.

 

I'm looking forward to meeting everyone in Australia. It's big enough for all of us, right? Those sandwhiches look sooo cute! I love the bathing suits, sign me up for one of those too. For some reason I've been gaining weight with this withdrawal. I thought we were supposed to lose weight...that was the one thing that would have been good for me! I only needed to lose about 20lbs but I gained it instead. So not fair   

 

I'm just glad to be feeling better for the moment. I'm hoping it will last for awhile. I hope others are finding some relief as well.

 

Healing hugs to everyone. 

 

 

 

[[ly...]]

 

 

Hey Everyone, happy Memorial Day!  I hope everyone has some big windows this weekend and can enjoy a nice BBQ at Cant's place.  I think I'll skip the turtle sandwiches.  Are we having strawberry shortcake??

[[ca...]]

Cally, sorry about the Shingles and hopefully it`s just a mild case  Glad you came on over to this thread so many awesome people ! Every One Else may your day be a good one ~CD

[[ga...]]

 

 

Hey Everyone, happy Memorial Day!  I hope everyone has some big windows this weekend and can enjoy a nice BBQ at Cant's place.  I think I'll skip the turtle sandwiches.  Are we having strawberry shortcake??

 

Absolutely!

Now, remember, nobody cuts it until Memorial Day!

[[ly...]]

 

 

Hey Everyone, happy Memorial Day!  I hope everyone has some big windows this weekend and can enjoy a nice BBQ at Cant's place.  I think I'll skip the turtle sandwiches.  Are we having strawberry shortcake??

 

Absolutely!

Now, remember, nobody cuts it until Memorial Day!

 

Ooooh!  Yum!

[[no...]]

you'll get there MiYu. Keep the faith.  . I take 2 grams of niacin and 1 gram of niacinimide each day. I have noticed that it helps t

 

Thanks Valley for your encouragement 

[qoute] Hi M regardless of all the crap that's going on I felt I was on the up yesterday only to be plunged back into super hell again today and each time feels a LOT worse than the last time, but is it or is it just our perception as we feel so awful most of the time, that when we do get a break its immense relief and unbelievable we can go backwards BIG time again and again?

 

I hope all for us that need to stabilise get there soon but remember that these windows and waves patterns as shitty as they are are totally normal, and a sign we're still  destabilised and not the drug. It was cutting the drug down that caused it not taking the drug, I was in'' true tolerance withdrawal'' for year's on my FULL prescribed dose not the ''myth' about holding while tapering

 

And even that was no where near as bad or drawn out symptom wise as my hell withdrwal from making cuts that caught up with me so badly and being advised to cut too soon and not doing long enough holds no matter how long I had to hold for. Go look at peole who have been off for ages going though this you can't say ''its the drug''  or ''its tolerance''after being off it for for many months or years can you? ITS LACK OF THE DRUG THAT CAUSED IT!!! :D ..  Their still destabilised and I noticed the same pattern over and over a too rapid taper or early jump or not holding long enough, or upodosing reinstating and not holding long enough. Anyway I'm off as I'm feeling really terrible right now   

 

:hug: to everyone.

 

 

Love Nova xxx :smitten:

 

Hi M regardless of all the crap that's going on I felt I was on the up yesterday only to be plunged back into super hell again today and each time feels a LOT worse than the last time, but is it or is it just our perception as we feel so awful most of the time, that when we do get a break its immense relief and unbelievable we can go backwards BIG time again and again?

 

I hope all for us that need to stabilise get there soon but remember that these windows and waves patterns as shitty as they are are totally normal, and a sign we're still  destabilised and not the drug. It was cutting the drug down that caused it not taking the drug, I was in'' true tolerance withdrawal'' for year's on my FULL prescribed dose not the ''myth' about holding while tapering

 

And even that was no where near as bad or drawn out symptom wise as my hell withdrwal from making cuts that caught up with me so badly and being advised to cut too soon and not doing long enough holds no matter how long I had to hold for. Go look at peole who have been off for ages going though this you can't say ''its the drug''  or ''its tolerance''after being off it for for many months or years can you? ITS LACK OF THE DRUG THAT CAUSED IT!!! :D ..  Their still destabilised and I noticed the same pattern over and over a too rapid taper or early jump or not holding long enough, or upodosing reinstating and not holding long enough. Anyway I'm off as I'm feeling really terrible right now 

 

:hug: to everyone.

 

 

Love Nova xxx :smitten:

 

Hi Nova 

Thank you as always for your wisdom  :hug:

I'm sorry you are back in hell 

But glad you had a little 'up'. That's some thing eh? I know its not much in the midst of so much suffering.

So , help me out a bit here.... You were in tolerance WD during your long years on the benzos?

I get the tolerance part, and the WDs when your body is asking for more of the drug to work.

But once we start tapering ....at what point do we know that we have held long enough , how do we know we haven't become 'tolerant ' .

Benzo brain is acting a bit confused , again! 

I'm having a lot of anxiety , yuck , the worst.... Mind says ' this journey is going to be hellish whatever you do ' , and I then feel like I can't do this....can't go through this. What if I don't stabilize etc.

 

Just needed to say it... It always helps coming here and seeing other buddies succeeding in their tapers with going slow and holding when needed. Im still In fear mode about tapering . I guess because I'm still having so much difficulty I'm afraid I'll never stabilize , and then it can only get worse.

 

Anxious mind speaking , afraid I'll never heal ..... I know we've all been there .....

 

I really hope all of those of us struggling will find our way with ease , and soon .

 

Love to all,

MiYu  :hug:

 

 

 

Hi M  to save me trying to rack more pressure what brain I got left writing a long  exspalnation by way of reply ..... read these qoutes

 

 

Love Nova xxx :smitten:

 

The idea is to taper slowly so down regulated receptors get time to re-adapt, along with the rest of the nervous system. "Tolerance withdrawal" when people hold too long sounds like plain old withdrawal symptoms catching up. I can't see how further destabilizing the nervous system by persisting with a taper can remedy this.

 

 

Tolerance withdrawal, in the context of a taper, does not exist. We were already tolerant to the benzo at the higher dose when it wasnn't working, so it stands to reason that we will be tolerant to all of the lower doses we taper down to. Some people think that if you hold too long at a particular dose in your taper, you become tolerant to it and experience symptoms. Often, what these symptoms are, are symtoms from the previous cut. For instance, someone cutting 0.25mg a fortnight valium may complain of tolerance withdrawal symptoms when they hold for a few more weeks at the new dose, but what they are actually experiencing, are symptoms from the other cuts, catching up with them.

 

 

As for tolerance withdrawal, boy, that sure can scare the hell out of a person doing a benzo taper, but it really seems more like the body playing catch up. I just don't understand how people who support this can so readily ignore the fact that benzos, certain ones in particular, can stay in the body for a long time. I was just looking up half life on klonopin because when I am nearing the 2mg mark I want to move from three times a day to two times a day, which I believe can be done though it will no doubt trigger IW until my body adapts, but each time I cut, I have experienced IW and then it has passed, but I digress. When I was looking at the half lifes and how long some of these benzos stay in the body, IIRC some of them were 100 days as a maximum. That astounded me. It also made me realize that if a drug remains in your body for over 30 days during that 30 days, what is the amount it is in your body at?

 

I would presume the amount is related to the dose you were taking, a level if you will, that is in your body. And if you cut and keep cutting, you would eventually hit a point where a higher amount was in your system despite that you have been taking a lower dose and then it adjust to the new lower amount after that said time frame passes. So your cuts may be going well, but if it is staying in your body at a previous level or a level higher than your dose, when that level drops according to your cuts, you will feel it.

 

That is when withdrawal will hit and a hold would be required because of the half life issue, no? Continuing to cut through that would just make it worse. And I can't imagine a hold triggering withdrawal. During my 'stabilization' where I held at 3.5mg which was lower than my average, I held for six weeks (longer than that magical month) and in the last two weeks of that hold, all withdrawal effects were gone. I was 'normal' again barring some very minor morning tremors that eventually dissipated and were IW.

 

 

Thank you for verifying what I kind of suspected. There has been, and continues to be that window/wave pattern to this hold. I actually wasn't sure if this was something unique to me, but even then, I figured I just had to continue holding whether it is unique or not.

 

And now that the 6 month time has past, I'm going through another wave. So I'll definitely be continuing the hold. I didn't realize that this was typical of benzos at all, but its more knowledge that not only helps me "cope," but it's knowledge I think I need to be able to relay to others if the need arises. It almost feels like "Part 2" is happening now with this continuation as sx are changing, and yet they still are definitely sx of an unstable CNS.

 

I have to admit that the hold itself with these windows and waves is a stressor all by itself. When the windows occur, I'm consistently myself all day and evening, and this lasts for about a month to 6 weeks, but with that last two weeks I start slipping into a wave kind of gradually, and I don't always see it coming. And then, I'm fully in that wave, and I'm not me consistently throughout the day, and it's even hard to fully remember how good I felt during the window. And it feels kind of awful with some emotional, physical and cognitive sx.

 

I'm glad I'm here too! Thank you for saying that. I've learned a lot the hard way about benzos, and I'm glad to share what I do know.

 

 

 

 

 

[[Va...]]

I had a pretty good day today. I had mostly physical symptoms. Lots of pain in my abdomen. I'm hoping it will be gone tomorrow. This holding is really starting to work it's magic! I was actually able to clean my bathroom for the first time in a year!! I actually don't like to clean but I was so excited that I was able to So grateful to my husband and daughter for keeping the house clean. Before today just the thought of cleaning was overwhelming and made my anxiety shoot through the roof. Today I cleaned the whole bathroom without a twinge of anxiety. I'm nowhere near done with this tapering but I'm hoping to do it slowly enough to stay first get back to being functional and then stay functional.

 

This is great news tntd!  --V

[[ca...]]

Nova, thanks for putting this out there as yes it`s a very tricky situation and very frustrating ! Hope your hanging in there and keeping the faith as i do know as a long time benzo user such as myself the phrase of it took a long time to get here and going to take a long time to get back and the road back may be a bit washed out Is a tough one to swallow but it is what it is  ~CD