The Long Hold Support Group

[[ga...]]

I've been holding for over 2 months on my Librium and am really discouraged. (Actually, it may be 3 months. I kind of don't want to look and see how long it's been.) Other meds are in the mix, too. I can't figure out what's making me so unstable. I'm very discouraged that I feel so awful and I'm not making any progress on my taper. How do you deal with the discouragement of not making progress? :'( I think I am never going to get off. And the clock is ticking. I will have to move in a year, but moving would kill me in this condition. I thought I would be off by then but that is totally out the window.

 

What are your other meds?  It could be they are the culprit.  All I can say is to hang on.  If you feel unstable, the last thing you want to do is make changes.  Have you been to surviving antidepressants?  They seem to have more knowledge of polydrugging and can help you determine which med needs to be tapered first.--V

 

Thanks, I have tried SA, but I rarely get a response to a question. It's so discouraging to wait and wait and get no response, not even a word of encouragement. Seems they are not very active.

 

Per my psychiatrist: I alternate 2 nights 25mg Seroquel with 1 night 1,500mg gabapentin for sleep. The idea was to not habituate to either of them. I suspect I may actually now be habituated to both of them.

 

Then I went through a period of really bad nerve pain late last year and my primary put me on gabapentin daily around the clock. Doesn't seem to be doing much to help the nerve pain, but taking it at night helps the restless leg syndrome, makes it tolerable so I can sleep. She had me on 300+300+300mg gabapentin, but I cut those back about a month ago to 200+200+300 (over the course of about 6 weeks).

 

Meanwhile, my psychiatrist left the practice, so my primary is doing all my prescribing. She told me to keep holding and make no changes for another month and then see her again. I think that my troubles started when I added the daily gabapentin on top of alternating it with the Seroquel, but I can't be sure. Lots of other bad stuff happened around the time I was making some med changes (crossing to L and adding the daily gabapentin). Still grieving a significant loss and a life upheaval, so that doesn't help. Trying to put one foot  in front of the other and believe tomorrow will be better. Kind of fogged up on Seroquel right now, so best not to think too much!

That's too bad they aren't responding. I know I didn't get a response until I just started making additional posts on my thread. They apologized for not responding sooner. Are you posting in the Benzo forum? That one isn't too active.  The AD forum is much more active. I know they would tell you to taper the seroquel first and then wait 3 to 6 months before tapering anything else. It sounds like you have a ton on your plate right now so holding is recommended until you feel the strength to make any changes.  Making med changes definitely complicates benzo tapering, but it can be remedied. You're still going to make it off no matter how long it takes. I'm sure most of us will be here for a long while to support and encourage you. 

 

Thanks V. I've tried both and get few responses. Tapering the Q isn't even an option. The X (then cross to L) was prescribed for trauma-related insomnia that respond to nothing else my doctor could think of. Then I saw psychiatrist who gave me the bad news about benzos and has been trying to wean me off for a year. He prescribed the Q and G so I could sleep because I was getting 0-2 hours of broken sleep due to night panics.

 

When my psych left, my primary suggested I take the Q every night and skip the high G dose. I balked at this because I was confused and exhausted and wishing I had my psych back. So she said just hold for a month and decide after that.

 

I feel so defeated holding. Maybe she's right. Maybe I should try to even everything out by taking the Q nightly. Right now the hold doesn't seem to be helping, but could be because of the other meds.

 

Thank you for answering. I am very socially isolated and that alone is scary. A kind, understanding word goes a long way when you are stuck at home alone.

[[ga...]]

These quotes represent my experience and philosophy on long holds:

"I highly doubt that holding will harm you, but I've seen people who've taken very long to recover after getting messed up during too-aggressive or unstable tapers. It doesn't look all that different (in terms of symptoms) from when people CT or taper all the way off a med too harshly and end up in protracted withdrawal. It's just that people end up in that same shape without actually having come all the way off the meds."

 

 

"If you've thrown yourself into chaotic withdrawal syndrome by ill-advised experimentation (or poor advice), holding is probably preferable to further decreasing or quitting altogether.

 

You need to bring some order to the chaos. If you hold at one level (of all your drugs), you are at least giving your nervous system some stability. Given the constants -- which still may be causing adverse effects, etc. -- your nervous system will regroup over time.

 

Once you see some consistency in symptom pattern, you can carefully adjust dosage to see what will help.

 

If you have been tapering systematically and run into a rough spot, holding can help you get past it. At least, when you hold, you can track your symptom pattern and see what the balance of waves and windows might be. If windows are gradually getting longer and more frequent -- a positive sign -- your nervous system is adjusting to the cumulative decreases and you will eventually be in a position to continue tapering.

 

If during a hold the windows pattern is not promising, a slight updose may be called for."

 

Been scrolling through and found this. The quote at holding all drugs at one level is especially insightful. I am not level at all because of alternating the and the Q. Perhaps that is the problem. Perhaps I have become hooked on them and now the up and down is messing me up.

 

Anyway, I thought the whole quote was worth repeating!

[[Va...]]

I've been holding for over 2 months on my Librium and am really discouraged. (Actually, it may be 3 months. I kind of don't want to look and see how long it's been.) Other meds are in the mix, too. I can't figure out what's making me so unstable. I'm very discouraged that I feel so awful and I'm not making any progress on my taper. How do you deal with the discouragement of not making progress? :'( I think I am never going to get off. And the clock is ticking. I will have to move in a year, but moving would kill me in this condition. I thought I would be off by then but that is totally out the window.

 

What are your other meds?  It could be they are the culprit.  All I can say is to hang on.  If you feel unstable, the last thing you want to do is make changes.  Have you been to surviving antidepressants?  They seem to have more knowledge of polydrugging and can help you determine which med needs to be tapered first.--V

 

Thanks, I have tried SA, but I rarely get a response to a question. It's so discouraging to wait and wait and get no response, not even a word of encouragement. Seems they are not very active.

 

Per my psychiatrist: I alternate 2 nights 25mg Seroquel with 1 night 1,500mg gabapentin for sleep. The idea was to not habituate to either of them. I suspect I may actually now be habituated to both of them.

 

Then I went through a period of really bad nerve pain late last year and my primary put me on gabapentin daily around the clock. Doesn't seem to be doing much to help the nerve pain, but taking it at night helps the restless leg syndrome, makes it tolerable so I can sleep. She had me on 300+300+300mg gabapentin, but I cut those back about a month ago to 200+200+300 (over the course of about 6 weeks).

 

Meanwhile, my psychiatrist left the practice, so my primary is doing all my prescribing. She told me to keep holding and make no changes for another month and then see her again. I think that my troubles started when I added the daily gabapentin on top of alternating it with the Seroquel, but I can't be sure. Lots of other bad stuff happened around the time I was making some med changes (crossing to L and adding the daily gabapentin). Still grieving a significant loss and a life upheaval, so that doesn't help. Trying to put one foot  in front of the other and believe tomorrow will be better. Kind of fogged up on Seroquel right now, so best not to think too much!

That's too bad they aren't responding. I know I didn't get a response until I just started making additional posts on my thread. They apologized for not responding sooner. Are you posting in the Benzo forum? That one isn't too active.  The AD forum is much more active. I know they would tell you to taper the seroquel first and then wait 3 to 6 months before tapering anything else. It sounds like you have a ton on your plate right now so holding is recommended until you feel the strength to make any changes.  Making med changes definitely complicates benzo tapering, but it can be remedied. You're still going to make it off no matter how long it takes. I'm sure most of us will be here for a long while to support and encourage you. 

 

Thanks V. I've tried both and get few responses. Tapering the Q isn't even an option. The X (then cross to L) was prescribed for trauma-related insomnia that respond to nothing else my doctor could think of. Then I saw psychiatrist who gave me the bad news about benzos and has been trying to wean me off for a year. He prescribed the Q and G so I could sleep because I was getting 0-2 hours of broken sleep due to night panics.

 

When my psych left, my primary suggested I take the Q every night and skip the high G dose. I balked at this because I was confused and exhausted and wishing I had my psych back. So she said just hold for a month and decide after that.

 

I feel so defeated holding. Maybe she's right. Maybe I should try to even everything out by taking the Q nightly. Right now the hold doesn't seem to be helping, but could be because of the other meds.

 

Thank you for answering. I am very socially isolated and that alone is scary. A kind, understanding word goes a long way when you are stuck at home alone.

I understand the isolation. Post as often as you need here and on BB to help. I'm just guessing that things will settle down by holding longer. There has been a lot of changes to your meds and my guess would be it could take up to 6 months to feel stable. I know you (including most of us here initially) feel we aren't making progress, but it depends on how you define progress. Is it getting off the drugs at lightening speed and then suffering the crap storm that ensues, or is it changing your mindset to being functional and sane throughout the process no matter how long it takes and walking away healed?  It is difficult to hold, but I find it more empowering the longer I do it. There is no reason to suffer through this. We often create our own hell (I did and am paying for it).  Hang in there!  It will get better. 

[[ga...]]

Thanks, V. I guess I'm OK with holding as long as I know I'm doing it right. Still need to figure out the Seroquel thing and whether that's messing up my hold. Just made the mistake of doing a search on Seroquel on this forum and came up with so many horror stores that now I am upset. And I didn't find an answer to my question, "is it OK to take it every night for sleep or will I habituate to it?" Sigh.

 

Also struggling with neuropathy that is not improving and know that won't get better until I'm off. So that is really hard to face day after day.

 

Thanks for being an encourager and not a thread-terrorist.

 

Gard

[[li...]]

When do you know if holding is working or if you need to updose?  Is there consensus anywhere on that?

[[Va...]]

Thanks, V. I guess I'm OK with holding as long as I know I'm doing it right. Still need to figure out the Seroquel thing and whether that's messing up my hold. Just made the mistake of doing a search on Seroquel on this forum and came up with so many horror stores that now I am upset. And I didn't find an answer to my question, "is it OK to take it every night for sleep or will I habituate to it?" Sigh.

 

Also struggling with neuropathy that is not improving and know that won't get better until I'm off. So that is really hard to face day after day.

 

Thanks for being an encourager and not a thread-terrorist.

 

Gard

No problem. We're glad your here!  I did find this advice given by a psychiatrist to someone on a benzo and seroquel.

 

She (psychiatrist) also feels I should get off the Seroquel first as the long-term effects of it could be very detrimental, so I'm thinking I'll focus on Seroquel first and hold on the Ativan. I've read several places that it's not a good idea to taper a benzo and an A/D or A/T at the same time.

 

I know you're stuck for now on the seroquel, but maybe you could bring it up with your doctor and discuss the positives and negatives. 

 

I have to tell you neuropathy is my biggest challenge.  I don't know where it came from as I didn't have it too bad before I started my taper.  All I can do is distract by working, walking, staying engaged etc.  I was doing weights in the gym for a couple of months until the neuropathy reared it's ugly head.  It is definitely subsiding the longer I hold so my fingers are crossed. --V

[[ga...]]

When do you know if holding is working or if you need to updose?  Is there consensus anywhere on that?

 

I haven't seen consensus, sadly. The one thing I read a few places is that the longer you wait, the less likely an updose will help. But some have done it. Some successfully and some not. I've been holding too long to consider it. Just going to keep holding.

[[ga...]]

Thanks, V. I guess I'm OK with holding as long as I know I'm doing it right. Still need to figure out the Seroquel thing and whether that's messing up my hold. Just made the mistake of doing a search on Seroquel on this forum and came up with so many horror stores that now I am upset. And I didn't find an answer to my question, "is it OK to take it every night for sleep or will I habituate to it?" Sigh.

 

Also struggling with neuropathy that is not improving and know that won't get better until I'm off. So that is really hard to face day after day.

 

Thanks for being an encourager and not a thread-terrorist.

 

Gard

No problem. We're glad your here!  I did find this advice given by a psychiatrist to someone on a benzo and seroquel.

 

She (psychiatrist) also feels I should get off the Seroquel first as the long-term effects of it could be very detrimental, so I'm thinking I'll focus on Seroquel first and hold on the Ativan. I've read several places that it's not a good idea to taper a benzo and an A/D or A/T at the same time.

 

I know you're stuck for now on the seroquel, but maybe you could bring it up with your doctor and discuss the positives and negatives. 

 

I have to tell you neuropathy is my biggest challenge.  I don't know where it came from as I didn't have it too bad before I started my taper.  All I can do is distract by working, walking, staying engaged etc.  I was doing weights in the gym for a couple of months until the neuropathy reared it's ugly head.  It is definitely subsiding the longer I hold so my fingers are crossed. --V

 

Gosh, I had the neuropathy before, too. It is some kind of autoimmune thing. I had it under control by eliminating dietary triggers and then it came back with a vengeance about 9 months into my taper. I'm glad to hear it could subside with a hold.

 

There's just no way I can quit the Q. My primary doctor wants me to take it daily. (Psych also said that would be OK, but I didn't want to.) The Q the only thing that stops the night panics and gives me sleep. I was just about dead from lack of sleep before I started it, getting about 3-4 hours of broken sleep per week. I may try to cut it down. Perhaps I don't need the whole 25mg.

[[Va...]]

When do you know if holding is working or if you need to updose?  Is there consensus anywhere on that?

I think it's individual.  I know that many who do it start at a higher dose than the last stable dose and come down to the last stable dose over a period of 3 to 4 days.  It seems to raise the serum levels faster.  I've usually gotten a paradoxical response where it feels like I'm taking speed, but my chemistry has always been weird.  You never know unless you try.  I did a 3 day updose but it just made things worse so I dropped back down and didn't suffer any adverse effects.  I'm certainly not against updosing to stabilize, but it is part of the crazy mind game you go through when holding as you will definitely have crappy days followed by better days.  It's the crappy days that mess with our heads.  Just do what your body is telling you and you feel is best.  I wish I had a clear cut answer, but we are all so different.  --V

[[li...]]

Just having a crappy day--back to 50% but I also jumped through windows in the last week with both feet and overdid. Went from walking the dog 15 minutes s day to an hour regardless of how bad disorientation/fog and DR are this week and have driven when I probably shouldn't have. I'm

My own worst enemy because I never do things in moderation cuz I so badly want my brain to be normal. It's a couch day today. Oh well. Live and learn

[[li...]]

And I haven't been sleeping as well this week, so I'm

Pushing through greater exhaustion and fog. So there ya go...

[[jr...]]

When do you know if holding is working or if you need to updose?  Is there consensus anywhere on that?

 

What caused you to start holding? did you make a cut that put you in the ditch? If so, I would reinstate 1/2 of my cut and then hold.

[[li...]]

More interested in seeing if a long hold will help because I've tried everything else. Just didn't know if there is a point where you say "I've held long enough and I should probably try another strategy". Committing to this for three months and if I'm seeing change I will keep holding if it seems beneficial

[[Va...]]

Just having a crappy day--back to 50% but I also jumped through windows in the last week with both feet and overdid. Went from walking the dog 15 minutes s day to an hour regardless of how bad disorientation/fog and DR are this week and have driven when I probably shouldn't have. I'm

My own worst enemy because I never do things in moderation cuz I so badly want my brain to be normal. It's a couch day today. Oh well. Live and learn

Sounds just like me. I push hard and pay the price. I would say yesterday was definitely a down day. I spent most of it laying around as the previous day I had an early morning meeting, a meeting at noon and then 5:00 so it exhausted me.  I also did my 4 miles which didn't help. It will subside... I feel fine today again. Sometimes pushing isn't a bad thing as it will tell you what you can handle physically.  That's my take anyway FWIW. 

[[Va...]]

More interested in seeing if a long hold will help because I've tried everything else. Just didn't know if there is a point where you say "I've held long enough and I should probably try another strategy". Committing to this for three months and if I'm seeing change I will keep holding if it seems beneficial

[[li...]]

Yes Valley--I always think "well I have to know if I'm getting better", but when I'm pushing through feeling terrible at the wrong time of day or packing in too much, I should know by now it's going to bite me cuz it always does. What if I knew in another month I can do things much more easily--I will regret overdoing now.

[[Va...]]

Yes Valley--I always think "well I have to know if I'm getting better", but when I'm pushing through feeling terrible at the wrong time of day or packing in too much, I should know by now it's going to bite me cuz it always does. What if I knew in another month I can do things much more easily--I will regret overdoing now.

LOL. I've overdone it through this whole taper and it doesn't seem to be affecting the benefits of holding. Just some down days and fatigue which may have come regardless of what I did. --V

[[Ke...]]

Hi

Well today is day 5 since I cut from 2.5 to 2.0 mgs of Valium. I have no idea if I did the right thing or not. I haven't been feeling too too bad.... Weak mainly which is scary for me. I keep questioning the two month hold at 2.5 mgs. I know I was feeling better but still don't have an understanding of what stability is. I woke up this morning feeling weird which of course is normal.

Did I do the right thing by not holding longer? I feel good that I made a jump down to 2.0 mgs and pray that I haven't hurt my recovery. I am scared and like all of us, want this to be over with.

Is being a bit dizzy, weak and shaky enough to make me reinstate to the 2.5 mgs or will that screw me up more? I know you guys warned me, but I also know this journey is complicated for all.

Thanks again

[[Va...]]

Hi

Well today is day 5 since I cut from 2.5 to 2.0 mgs of Valium. I have no idea if I did the right thing or not. I haven't been feeling too too bad.... Weak mainly which is scary for me. I keep questioning the two month hold at 2.5 mgs. I know I was feeling better but still don't have an understanding of what stability is. I woke up this morning feeling weird which of course is normal.

Did I do the right thing by not holding longer? I feel good that I made a jump down to 2.0 mgs and pray that I haven't hurt my recovery. I am scared and like all of us, want this to be over with.

Is being a bit dizzy, weak and shaky enough to make me reinstate to the 2.5 mgs or will that screw me up more? I know you guys warned me, but I also know this journey is complicated for all.

Thanks again

Updosing back to 2.5 probably won't hurt as you're still early into your last cut. You may find an adjustment period of 5 to 7 days while your body tries to stabilize, but if you're  feeling rotten right now, my experience is that it intensifies. I get hit twice every cut.  On day 4 and day 10 and the sxs ramp up from there. I'm not saying that will happen to you, but if it's unbearable don't be afraid to do what you need to do. If it's bearable, you can try to ride it out, but that was a big cut from that low of a dose. We will give you support no matter what you choose to do. 

[[Ke...]]

Crap.... I don't know what to do.....

I know if this will be what it's like again for the next while... Then I can't do it but by updosing I feel like a failure and scared I will never feel better.

[[Va...]]

Crap.... I don't know what to do.....

I know if this will be what it's like again for the next while... Then I can't do it but by updosing I feel like a failure and scared I will never feel better.

How could you have failed by trying?  You'll get there soon enough. I would just consider this a blip on your road to recovery. Always remind yourself you are in control. If you have to updose or hold, it's all you taking charge of your taper and what your body is telling you. I promise that you will feel better if you are patient with yourself and the process  --V

[[fr...]]

  I agree, that was a 20% cut I think and a big one.  See how you feel in the next few days and you might do ok.  I am just like you Valley, i get hit on day 4 and 10 and it goes downhill.  I am now going on week 6 and hopefully will start to feel better with this neuropathy in my feet.  The nausea is better, not gone completely but better.  I will hold regardless and then I'm going to LT.  Good luck and hope you begin to feel better.  Never feel like a failure, we can only learn when we do to much and fortunately you can fix it at this point. 

[[St...]]

Is everybody on here tapering from valium pretty much?  I am on Ativan, is anyone else tapering from that?  Just wondering.....

[[Va...]]

  I agree, that was a 20% cut I think and a big one.  See how you feel in the next few days and you might do ok.  I am just like you Valley, i get hit on day 4 and 10 and it goes downhill.  I am now going on week 6 and hopefully will start to feel better with this neuropathy in my feet.  The nausea is better, not gone completely but better.  I will hold regardless and then I'm going to LT.  Good luck and hope you begin to feel better.  Never feel like a failure, we can only learn when we do to much and fortunately you can fix it at this point.

Hi free. The neuropathy in my feet is getting better, but I also take HGH which is notorious for causing foot pain and neuropathy so I'm afraid I'll have it all the way down unfortunately.  You should start feeling a little better at this point. 6 weeks was when I got my first big window. I actually felt completely normal for a few hours. 

[[wa...]]

Is everybody on here tapering from valium pretty much?  I am on Ativan, is anyone else tapering from that?  Just wondering.....

Nope - tapering a Z drug.  I'm miserable trying to get more sleep.  Now I have a sinus infection and can't really sleep it off.  Holding but still pretty ill.  WBB