The Long Hold Support Group

[[Ca...]]

So I am having a recurrence of all the old w/d symptoms - pain in spine, exhaustion, and, and that terrible nausea I had not experienced in a while. Went back to my log & realized I have cut almost 10% since the summer - most of that since beginning of September - and am realizing that it is just too much, as paltry as it seems. Sigh. 

[[Su...]]

My most recent cut, 12 days ago, has been one of the more interesting in my journey.

 

At this stage, maybe a 12.5% cut on an already low dose is too much. As this is ativan, predictably by day 3 I could feel the gnawing of higher levels of anxiety. I have to say that it almost took my breath away. Not panic attack kind of stuff, but a gripping feeling that I had to really deep breathe my way out of, several times each day. I found myself looking forward to my meager afternoon dose, even though it is probably not doing much, therapeutically.

 

I wonder what it will be like when there is nothing left to take at the appointed time each day. Sigh.

 

But, I also have been more active than I have ever been, socially and traveling. I have a few stressful things coming up in a few weeks that I have already been pre-stressing about -- gotta figure out how to channel that.

 

Worst of all is that my sleep has taken a hit, degrading a bit to be more like 5.5 hours instead of 6 and the unwelcome reliably waking at 5am regardless of whether I am exhausted or not.

 

But, I am still on course. The added activity is elongating the post-cut stabilization process, but is probably long run a good thing as the social exposure brings its own rewards.

 

Great post TMB!

Thanks you for voicing this TMB, I have so many of the same thoughts... and concerns and ... experiences.

I am so loving doing more in my life and see that my taper suffers, or I taper well and the rest of my life suffers 

Still we will keep going 

SS

[[Su...]]

So I am having a recurrence of all the old w/d symptoms - pain in spine, exhaustion, and, and that terrible nausea I had not experienced in a while. Went back to my log & realized I have cut almost 10% since the summer - most of that since beginning of September - and am realizing that it is just too much, as paltry as it seems. Sigh.

10% seems to small in other arenas in life doesn't it?  but in this world of BenZo's it is really a lot! 

I hope that you feel better soon and that all those old symptoms disappear so soon....

And you are down another 10%.....

thanks for the update!

SS

[[Ca...]]

So I am having a recurrence of all the old w/d symptoms - pain in spine, exhaustion, and, and that terrible nausea I had not experienced in a while. Went back to my log & realized I have cut almost 10% since the summer - most of that since beginning of September - and am realizing that it is just too much, as paltry as it seems. Sigh.

10% seems to small in other arenas in life doesn't it?  but in this world of BenZo's it is really a lot! 

I hope that you feel better soon and that all those old symptoms disappear so soon....

And you are down another 10%.....

thanks for the update!

SS

 

Thanks for the response. What gets me - among so many things - is that when I get sick again, I am afraid all over again that it is a hideous disease, that I am doomed, that my life is over, that I cannot tolerate my nighttime terrors and will just have to exit my life, blah blah. Then I go back and read my dosing/symptom log (which I really only pay attention to when things are rough) and there they all are: the insomnia, pain, exhaustion, anxiety, nausea. Deja vu all over again. Every time I see someone else show up here at the beginning of this journey my heart just rips open for them, and I am grateful that I am not at the very beginning, and just have to suck it up and survive it once again....I am also increasingly concerned at all the people who are using Gabapentin to help along the way, since I know how it can just complicate and perhaps exacerbate things in the long run. Part of my dilemma is always figuring out what is the V withdrawal, what is the Gaba withdrawal, what is residual Lyme syndrome, and what is creeping old age.

[[He...]]

CalleyDex

I have a neuropathic pain condition for which I have been taking gabapentin fir 11 years.... way before my troubles with Ativan tolerance.  I'm interested in why you feel this way about gabapentin....I have no choice.  My neurologist told me it doesn't work on gabba ....

 

❤️HS

[[Su...]]

So I am having a recurrence of all the old w/d symptoms - pain in spine, exhaustion, and, and that terrible nausea I had not experienced in a while. Went back to my log & realized I have cut almost 10% since the summer - most of that since beginning of September - and am realizing that it is just too much, as paltry as it seems. Sigh.

10% seems to small in other arenas in life doesn't it?  but in this world of BenZo's it is really a lot! 

I hope that you feel better soon and that all those old symptoms disappear so soon....

And you are down another 10%.....

thanks for the update!

SS

 

Thanks for the response. What gets me - among so many things - is that when I get sick again, I am afraid all over again that it is a hideous disease, that I am doomed, that my life is over, that I cannot tolerate my nighttime terrors and will just have to exit my life, blah blah. Then I go back and read my dosing/symptom log (which I really only pay attention to when things are rough) and there they all are: the insomnia, pain, exhaustion, anxiety, nausea. Deja vu all over again. Every time I see someone else show up here at the beginning of this journey my heart just rips open for them, and I am grateful that I am not at the very beginning, and just have to suck it up and survive it once again....I am also increasingly concerned at all the people who are using Gabapentin to help along the way, since I know how it can just complicate and perhaps exacerbate things in the long run. Part of my dilemma is always figuring out what is the V withdrawal, what is the Gaba withdrawal, what is residual Lyme syndrome, and what is creeping old age.

 

Aren't logs the most important thing!!!!

I can track things I didn't even know I needed to track  by going back and looking and counting days etc...

They show me how bad I felt at times.... and show me that i then feel better soon.. some days sooner than others

Also really show me how much I was asking of my body at times..... I'm easier on it these days and voila!  I'm feeling better, most of the time....

some of the time,

well today anyway

SS

[[He...]]

SS.

SO glad you are feeling better today ❤️

[[To...]]

Great post TMB!

Thanks you for voicing this TMB, I have so many of the same thoughts... and concerns and ... experiences.

I am so loving doing more in my life and see that my taper suffers, or I taper well and the rest of my life suffers 

Still we will keep going 

SS

Thanks SS. Taper is temporary, life is forever. Great that you are able to do more living!

[[To...]]

TMB

You are a sweet man.... I'm trying to figure it all out.... driving everyone including myself insane... I think perhaps that is my benzo brain.... I'll get there

 

Proud that you are doing so well.... pushing yourself seems to have positive results for you.... it does the opposite for me.  Be careful as you approach the finish line.

 

I wish you well my friend.

❤️HS

Thanks HS. You will get there, for sure, using the approach that works for you.

[[Ca...]]

CalleyDex

I have a neuropathic pain condition for which I have been taking gabapentin fir 11 years.... way before my troubles with Ativan tolerance.  I'm interested in why you feel this way about gabapentin....I have no choice.  My neurologist told me it doesn't work on gabba ....

 

❤️HS

You can see from my signature that I took gaba for about 6 years - massive doses - and had a hellish time getting off. I know some people have no trouble tapering off, and don't get me wrong, I had so much pain from Lyme that without it I'd have been a dead person. I understand its value in certain situations, but it can be as addictive and as damaging to the brain as a benzo IMO

[[Ca...]]

So I am having a recurrence of all the old w/d symptoms - pain in spine, exhaustion, and, and that terrible nausea I had not experienced in a while. Went back to my log & realized I have cut almost 10% since the summer - most of that since beginning of September - and am realizing that it is just too much, as paltry as it seems. Sigh.

10% seems to small in other arenas in life doesn't it?  but in this world of BenZo's it is really a lot! 

I hope that you feel better soon and that all those old symptoms disappear so soon....

And you are down another 10%.....

thanks for the update!

SS

 

Thanks for the response. What gets me - among so many things - is that when I get sick again, I am afraid all over again that it is a hideous disease, that I am doomed, that my life is over, that I cannot tolerate my nighttime terrors and will just have to exit my life, blah blah. Then I go back and read my dosing/symptom log (which I really only pay attention to when things are rough) and there they all are: the insomnia, pain, exhaustion, anxiety, nausea. Deja vu all over again. Every time I see someone else show up here at the beginning of this journey my heart just rips open for them, and I am grateful that I am not at the very beginning, and just have to suck it up and survive it once again....I am also increasingly concerned at all the people who are using Gabapentin to help along the way, since I know how it can just complicate and perhaps exacerbate things in the long run. Part of my dilemma is always figuring out what is the V withdrawal, what is the Gaba withdrawal, what is residual Lyme syndrome, and what is creeping old age.

 

Aren't logs the most important thing!!!!

I can track things I didn't even know I needed to track  by going back and looking and counting days etc...

They show me how bad I felt at times.... and show me that i then feel better soon.. some days sooner than others

Also really show me how much I was asking of my body at times..... I'm easier on it these days and voila!  I'm feeling better, most of the time....

some of the time,

well today anyway

SS

 

I hear that - God bless us everyone

[[He...]]

TMB

I Just read your sig and see that you reduced your dose by ABOUT 12% in a Month! Yikes. I could never do that! I am very close in my dose to where you are, but I can only reduce by about 5or 6 % a month. All power to you!

May I ask, are you doing a micro taper? How are you doing it?

 

Thanks, Heathcliff

[[He...]]

To everyone,

 

I know everyone must find their own way in this crazy difficult journey, but I get so concerned fir all my buddies who are suffering so much and are talking about wanting to stop holding and start cutting again, even when they are already in the throes of bad wdsx.

 

Please please try to be patient.  IMO, just because you are still having wdsx, it doesn't mean the hold is not working. It may very well be that your brain just needs a lot more time to heal and catch up to prevoius cuts and reductions that were just too big and too fast. Sometimes a hold needs to be LONG! to work.

Please try to be patient, give it more time before you give up on your hold.

 

IMO you will be glad you did! If you start cutting again now, you may make matters worse. Be good to your brain and CNS.. Give them the time they are screaming for to heal and get stable again.

 

PATIENCE, STRENGTH, COURAGE, PERSEVERANCE.  AND MOST OF ALL, LOVE YOURSELF, BE GOOD TO YOURSELF, DONT GIVE UP THE FIGHT.  YOU ARE WORTH THE FIGHT.  :oXo: There WILL BE A POT OF GOLD AND FREEDOM AT THE END OF THE ROAD.

 

TAKE CARE All OF YOU.  I AM FIGHTING RIGHT ALONGSIDE ALL OF YOU TOO. Let's be here for each other.  :hug: :hug:

 

Heathcliff

 

 

[[bo...]]

I agree Heath wholeheartedly .

I am finished ,and in some ways it's like one great big long hold .. there is no where to go from here . It's just head down butt up and trying to ride out these sx. There are no choices , no options. Dont have a choice to cut or increase !

its a difficult time right now.. but like all my buddies just hanging on for the ride ... lots of love to all xx

[[He...]]

Hi Bozobertie!

I see it took you about 1 1/2 years to get from 1 mg to jump off Valium.

I imagine it will take me that long too.

You give me lots of hope as I am at .827 Valium right now. I hope I can jum by Jan 2019... but really I am not set in my way. Whatever it is, it is.

Thanks for staying with us and encouraging us. I aporeciate it and I am sure everyone else doestoo. And....BRAVO! To you! Congratulations for keeping up the fight....AND WINNING!

 

Heathcliff

[[be...]]

To everyone,

 

I know everyone must find their own way in this crazy difficult journey, but I get so concerned fir all my buddies who are suffering so much and are talking about wanting to stop holding and start cutting again, even when they are already in the throes of bad wdsx.

 

Please please try to be patient.  IMO, just because you are still having wdsx, it doesn't mean the hold is not working. It may very well be that your brain just needs a lot more time to heal and catch up to prevoius cuts and reductions that were just too big and too fast. Sometimes a hold needs to be LONG! to work.

Please try to be patient, give it more time before you give up on your hold.

 

IMO you will be glad you did! If you start cutting again now, you may make matters worse. Be good to your brain and CNS.. Give them the time they are screaming for to heal and get stable again.

 

PATIENCE, STRENGTH, COURAGE, PERSEVERANCE.  AND MOST OF ALL, LOVE YOURSELF, BE GOOD TO YOURSELF, DONT GIVE UP THE FIGHT.  YOU ARE WORTH THE FIGHT.  :oXo: There WILL BE A POT OF GOLD AND FREEDOM AT THE END OF THE ROAD.

 

TAKE CARE All OF YOU.  I AM FIGHTING RIGHT ALONGSIDE ALL OF YOU TOO. Let's be here for each other.  :hug: :hug:

 

Heathcliff

Excellent Post Heath.

[[ly...]]

To everyone,

 

I know everyone must find their own way in this crazy difficult journey, but I get so concerned fir all my buddies who are suffering so much and are talking about wanting to stop holding and start cutting again, even when they are already in the throes of bad wdsx.

 

Please please try to be patient.  IMO, just because you are still having wdsx, it doesn't mean the hold is not working. It may very well be that your brain just needs a lot more time to heal and catch up to prevoius cuts and reductions that were just too big and too fast. Sometimes a hold needs to be LONG! to work.

Please try to be patient, give it more time before you give up on your hold.

 

IMO you will be glad you did! If you start cutting again now, you may make matters worse. Be good to your brain and CNS.. Give them the time they are screaming for to heal and get stable again.

 

PATIENCE, STRENGTH, COURAGE, PERSEVERANCE.  AND MOST OF ALL, LOVE YOURSELF, BE GOOD TO YOURSELF, DONT GIVE UP THE FIGHT.  YOU ARE WORTH THE FIGHT.  :oXo: There WILL BE A POT OF GOLD AND FREEDOM AT THE END OF THE ROAD.

 

TAKE CARE All OF YOU.  I AM FIGHTING RIGHT ALONGSIDE ALL OF YOU TOO. Let's be here for each other.  :hug: :hug:

 

Heathcliff

Excellent Post Heath.

 

Yes Heath!  Very nice!

[[He...]]

Thanks Lynn and Begood

Not sleeping too well tonight but hangin in.

Think I'll hit the pillow again and see what happens.

Heath

[[He...]]

Heath

I feel like you are talking to me....

my doctor told me to cut and I did yesterday.  So far it is a disaster.

I guess I need to talk to him... I'm in a bad way right now .  I'm stuck between a rock and a hard place. 

 

Thanks for the message

❤️HS

[[He...]]

You guys knew this would happen to me. Not sure how to proceed......should I go back to the dose I was on.  It's only 1/4 of a pill. .125 mg

[[He...]]

My daughter told me I was a terrible disappointment yesterday.....I was devastated.  I feel such shame.  I can't see my doctor until tomorrow.... he's booked today

 

I don't know what to do or where to turn

❤️HS

[[ly...]]

You guys knew this would happen to me. Not sure how to proceed......should I go back to the dose I was on.  It's only 1/4 of a pill. .125 mg

 

If it were me I would go back and then just hold until I was feeling a lot better.  I held for 8 months once.  The best thing to do is make a decision and put it aside.  The going back and forth and second guessing will ramp anxiety and make you crazy.  I can't see any good coming out of cutting in the face of bad sxs.  It's rare to experience tolerance wd.  Colin has a sticky on this that is a good explanation.  I don't know if you are actually experiencing any tolerance wd.  I didn't.

 

 

And it's not good to push too much when you feel a little better.  Baby steps.

 

Is your doctor forcing you to taper?  I thought your neurologist told you to hold?

 

It's very difficult with all the individuality and uncertainty.  The decision is yours but I think it best to decide one way or the other - and stick with it.  I could not cut for a long time so this made it a non-decision decision for me.  I had no choice as far as I was concerned.  I was just too sick and it only made sense to me to take a taper break until my brain adjusted.  I wasn't on BB back then so I had no thoughts of "tolerance" - probably a very good thing (for me).

 

Just saw your post about your daughter.  People just don't understand.  Perhaps she can come to BB and learn about what people go through.

[[He...]]

I have 2 doctors who are telling me two different things

[[He...]]

Lynn

When you were so sick......how long did it take you to turn it around?

HS

[[ly...]]

Lynn

When you were so sick......how long did it take you to turn it around?

HS

 

probably 6 months...but I did start seeing improvement along the way (after a few months).  I was not well enough to cut until 8 months.

 

As to your doctors, it's up to you what to do.  My pdoc was of no help and told me to stay on for life.  I rarely even spoke to him about my taper.  When I first told him about the awful wd sxs he said it was my anxiety returning.  Just ridiculous nonsense.  I was done listening to him.

 

You only have 2 choices.  Cut or hold.  If a hold does not work then you have lost time and, maybe, extended this whole nightmare.  I do not believe that a hold causes damage.  If you decide to hold I think it best to mark your calendar for 4 months out and forget about it until then.  Put a firm stop to the constant back and forth.  Give it a chance (or not). If you are worse or have not seen improvement you should re-evaluate at that point.  This is what I would do.  I do think that the constant back and forth is very bad for you.