The Long Hold Support Group

[[Me...]]

Hi, I've been on K for 6mos. Prior to that, I had been pretty much CT by a hospital because 30+ years of prescribed, used as directed Xanax suddenly stopped working. I've had two unsuccessful K tapers ( see my history. Doc tried to wean me too fast). It has been 5 weeks since I went back up to my original dose of K ( 0.5mg every 6 hrs.). I have planned a 3% liquid microtaper due to the many decades I have been kept on a benzodiazepam. My question to the long hold group is this......How do I know when I'm ready to beging my micro liquid taper?  I am having more and more windows since going back to my original K of 0.5mg 4X/day. Just had five day window followed by an uncomfortable day then another window today. Ugh. Sorry if I'm being repetitive. My fear is that if I wait too long, the K will begin to lose effectiveness and I do not want to have to up from my original dose. Worried because I've already been on K 6 months. Knowledge, experience, support all welcome.

Grateful in advance,

Mellowplease

[[ly...]]

Hi, I've been on K for 6mos. Prior to that, I had been pretty much CT by a hospital because 30+ years of prescribed, used as directed Xanax suddenly stopped working. I've had two unsuccessful K tapers ( see my history. Doc tried to wean me too fast). It has been 5 weeks since I went back up to my original dose of K ( 0.5mg every 6 hrs.). I have planned a 3% liquid microtaper due to the many decades I have been kept on a benzodiazepam. My question to the long hold group is this......How do I know when I'm ready to beging my micro liquid taper?  I am having more and more windows since going back to my original K of 0.5mg 4X/day. Just had five day window followed by an uncomfortable day then another window today. Ugh. Sorry if I'm being repetitive. My fear is that if I wait too long, the K will begin to lose effectiveness and I do not want to have to up from my original dose. Worried because I've already been on K 6 months. Knowledge, experience, support all welcome.

Grateful in advance,

Mellowplease

 

It depends...  How bad was your wave?  You might want to give it a little bit longer just to make sure the improvement sticks.  5 weeks is not a long time when trying to get stable. It doesn't sound like you are experiencing tolerance wd.  You could start with a small cut and see how it goes but I'd probably want a longer period of stability before proceeding with my taper.  You've gone thru some big changes and giving your brain a little more time might be a good plan.

[[Va...]]

Hi, I've been on K for 6mos. Prior to that, I had been pretty much CT by a hospital because 30+ years of prescribed, used as directed Xanax suddenly stopped working. I've had two unsuccessful K tapers ( see my history. Doc tried to wean me too fast). It has been 5 weeks since I went back up to my original dose of K ( 0.5mg every 6 hrs.). I have planned a 3% liquid microtaper due to the many decades I have been kept on a benzodiazepam. My question to the long hold group is this......How do I know when I'm ready to beging my micro liquid taper?  I am having more and more windows since going back to my original K of 0.5mg 4X/day. Just had five day window followed by an uncomfortable day then another window today. Ugh. Sorry if I'm being repetitive. My fear is that if I wait too long, the K will begin to lose effectiveness and I do not want to have to up from my original dose. Worried because I've already been on K 6 months. Knowledge, experience, support all welcome.

Grateful in advance,

Mellowplease

 

It depends...  How bad was your wave?  You might want to give it a little bit longer just to make sure the improvement sticks.  5 weeks is not a long time when trying to get stable. It doesn't sound like you are experiencing tolerance wd.  You could start with a small cut and see how it goes but I'd probably want a longer period of stability before proceeding with my taper.  You've gone thru some big changes and giving your brain a little more time might be a good plan.

I agree with lynn. 

[[Va...]]

Hey gard I found the street you live on!

 

http://sharesloth.com/wp-content/uploads/2014/06/SLOTH-LOVER-Street-Sign-slow-furry-mammal-south-america-jungles-costa-rica-gift-0-500x212.jpg

[[sw...]]

Hi, oscar So we meet again...Yes, I am holding longer than most, as well. Is 5 weeks considered long enough to join? I have been tapering 10 mg Valium since 3/2014. I found that cutting .25mg and holding 5 weeks is what keeps me from experiencing alot of sxs. I love the quote that you posted. 

Hikingchik:

 

It says in your profile that you jumped last August. Did you reinstate? And if you are off the Valium altogether, are symptoms better now?

It really helps to have other people to compare to.

 

Thanks,

 

Tommy aka White Guy

[[Va...]]

Hi, oscar So we meet again...Yes, I am holding longer than most, as well. Is 5 weeks considered long enough to join? I have been tapering 10 mg Valium since 3/2014. I found that cutting .25mg and holding 5 weeks is what keeps me from experiencing alot of sxs. I love the quote that you posted. 

Hikingchik:

 

It says in your profile that you jumped last August. Did you reinstate? And if you are off the Valium altogether, are symptoms better now?

It really helps to have other people to compare to.

 

Thanks,

 

Tommy aka White Guy

Hi swammi! Hikingchik hasn't been on for a while. She may or may not respond. She has successfully tapered off with minimal symptoms and basically walked off healed.  --V

[[no...]]

Hi, oscar So we meet again...Yes, I am holding longer than most, as well. Is 5 weeks considered long enough to join? I have been tapering 10 mg Valium since 3/2014. I found that cutting .25mg and holding 5 weeks is what keeps me from experiencing alot of sxs. I love the quote that you posted. 

Hikingchik:

 

It says in your profile that you jumped last August. Did you reinstate? And if you are off the Valium altogether, are symptoms better now?

It really helps to have other people to compare to.

 

Thanks,

 

Tommy aka White Guy

Hi Tommy here's HC's last post on the above subject ...http://www.benzobuddies.org/forum/index.php?topic=172886.msg2300896#msg2300896

 

 

 

 

Love Nova xxx  :smitten:

[[Ca...]]

For MiYu and others suffering from chronic pain. I have gathered up resources I have found helpful and posted them on my progress log. It's really more of a collection of resources than a progress log, but so far nobody has caught me not logging.

 

http://www.benzobuddies.org/forum/index.php?topic=137858.msg2349623#msg2349623

 

Wishing everyone a window-ful day!

 

Gard

Thanks Gard, some great stuff in there, though some new conceps stretched my poor little brain a bit... The adrenal info was of particular interest and relativity... As were many of your personal words... I left feeling enriched... Ty.

 

[[ga...]]

Hey gard I found the street you live on!

 

http://sharesloth.com/wp-content/uploads/2014/06/SLOTH-LOVER-Street-Sign-slow-furry-mammal-south-america-jungles-costa-rica-gift-0-500x212.jpg

 

Is this farther from the highway? If so, I'm moving! Could take awhile at the speed I go, though.

[[ga...]]

For MiYu and others suffering from chronic pain. I have gathered up resources I have found helpful and posted them on my progress log. It's really more of a collection of resources than a progress log, but so far nobody has caught me not logging.

 

http://www.benzobuddies.org/forum/index.php?topic=137858.msg2349623#msg2349623

 

Wishing everyone a window-ful day!

 

Gard

Thanks Gard, some great stuff in there, though some new conceps stretched my poor little brain a bit... The adrenal info was of particular interest and relativity... As were many of your personal words... I left feeling enriched... Ty.

 

Yw. There was adrenal stuff in there? You got more out of it than I did! I'd better go read what I wrote. 

[[Ca...]]

For MiYu and others suffering from chronic pain. I have gathered up resources I have found helpful and posted them on my progress log. It's really more of a collection of resources than a progress log, but so far nobody has caught me not logging.

 

http://www.benzobuddies.org/forum/index.php?topic=137858.msg2349623#msg2349623

 

Wishing everyone a window-ful day!

 

Gard

Thanks Gard, some great stuff in there, though some new conceps stretched my poor little brain a bit... The adrenal info was of particular interest and relativity... As were many of your personal words... I left feeling enriched... Ty.

 

Yw. There was adrenal stuff in there? You got more out of it than I did! I'd better go read what I wrote. 

Lol, u sound like me... glad my parents gave me a short name...

-it was a link, earlier in your log...

 

[[ga...]]

For MiYu and others suffering from chronic pain. I have gathered up resources I have found helpful and posted them on my progress log. It's really more of a collection of resources than a progress log, but so far nobody has caught me not logging.

 

http://www.benzobuddies.org/forum/index.php?topic=137858.msg2349623#msg2349623

 

Wishing everyone a window-ful day!

 

Gard

Thanks Gard, some great stuff in there, though some new conceps stretched my poor little brain a bit... The adrenal info was of particular interest and relativity... As were many of your personal words... I left feeling enriched... Ty.

 

Yw. There was adrenal stuff in there? You got more out of it than I did! I'd better go read what I wrote. 

Lol, u sound like me... glad my parents gave me a short name...

-it was a link, earlier in your log...

 

I found the adrenals post! Boy, there's a lot of stuff in there I forgot all about. I'm glad you got me to look again. I found this line from late 2015, before I did my long hold (which was most of 2016).

 

The leaves are turning colors here...Fall is my favorite time of year. But that is just a thought in my head. I'm anxious most of the time now. My total benzo daily dose is the equivalence of just below 1mg Xanax. I should be celebrating, right?

 

I hit me between the eyes. I forgot about those months of unrelenting anxiety and nerve pain when I was pushing my taper even though I had had a huge Xanax crash and had become nearly nonfunctional. Now, after my long hold, I still have generalized anxiety and some nasty symptom spikes, but not the endless waves. I can function well enough that I am not a constant burden to my children. I think, if not for my original sleep disorder being unresolved, I could function completely on my own, maybe even be working part time. I'm very grateful to this thread for giving me the encouragement to go as slowly as I need to even though I am not a patient person.

 

Gard

[[Ca...]]

For MiYu and others suffering from chronic pain. I have gathered up resources I have found helpful and posted them on my progress log. It's really more of a collection of resources than a progress log, but so far nobody has caught me not logging.

 

http://www.benzobuddies.org/forum/index.php?topic=137858.msg2349623#msg2349623

 

Wishing everyone a window-ful day!

 

Gard

Thanks Gard, some great stuff in there, though some new conceps stretched my poor little brain a bit... The adrenal info was of particular interest and relativity... As were many of your personal words... I left feeling enriched... Ty.

 

Yw. There was adrenal stuff in there? You got more out of it than I did! I'd better go read what I wrote. 

Lol, u sound like me... glad my parents gave me a short name...

-it was a link, earlier in your log...

 

I found the adrenals post! Boy, there's a lot of stuff in there I forgot all about. I'm glad you got me to look again. I found this line from late 2015, before I did my long hold (which was most of 2016).

 

The leaves are turning colors here...Fall is my favorite time of year. But that is just a thought in my head. I'm anxious most of the time now. My total benzo daily dose is the equivalence of just below 1mg Xanax. I should be celebrating, right?

 

I hit me between the eyes. I forgot about those months of unrelenting anxiety and nerve pain when I was pushing my taper even though I had had a huge Xanax crash and had become nearly nonfunctional. Now, after my long hold, I still have generalized anxiety and some nasty symptom spikes, but not the endless waves. I can function well enough that I am not a constant burden to my children. I think, if not for my original sleep disorder being unresolved, I could function completely on my own, maybe even be working part time. I'm very grateful to this thread for giving me the encouragement to go as slowly as I need to even though I am not a patient person.

 

Gard

Its so good to look back at times..

Asides from Tapering by SX,

And Holding to heal,

My next thing would probably be, having a diary, log, or record to look back on, as its impossible to remember with any accuracy, the true pain of years gone by...

-even weeks or months... -but there can be a trap in looking too often...

 

[[ga...]]

For MiYu and others suffering from chronic pain. I have gathered up resources I have found helpful and posted them on my progress log. It's really more of a collection of resources than a progress log, but so far nobody has caught me not logging.

 

http://www.benzobuddies.org/forum/index.php?topic=137858.msg2349623#msg2349623

 

Wishing everyone a window-ful day!

 

Gard

Thanks Gard, some great stuff in there, though some new conceps stretched my poor little brain a bit... The adrenal info was of particular interest and relativity... As were many of your personal words... I left feeling enriched... Ty.

 

Yw. There was adrenal stuff in there? You got more out of it than I did! I'd better go read what I wrote. 

Lol, u sound like me... glad my parents gave me a short name...

-it was a link, earlier in your log...

 

I found the adrenals post! Boy, there's a lot of stuff in there I forgot all about. I'm glad you got me to look again. I found this line from late 2015, before I did my long hold (which was most of 2016).

 

The leaves are turning colors here...Fall is my favorite time of year. But that is just a thought in my head. I'm anxious most of the time now. My total benzo daily dose is the equivalence of just below 1mg Xanax. I should be celebrating, right?

 

I hit me between the eyes. I forgot about those months of unrelenting anxiety and nerve pain when I was pushing my taper even though I had had a huge Xanax crash and had become nearly nonfunctional. Now, after my long hold, I still have generalized anxiety and some nasty symptom spikes, but not the endless waves. I can function well enough that I am not a constant burden to my children. I think, if not for my original sleep disorder being unresolved, I could function completely on my own, maybe even be working part time. I'm very grateful to this thread for giving me the encouragement to go as slowly as I need to even though I am not a patient person.

 

Gard

Its so good to look back at times..

Asides from Tapering by SX,

And Holding to heal,

My next thing would probably be, having a diary, log, or record to look back on, as its impossible to remember with any accuracy, the true pain of years gone by...

-even weeks or months... -but there can be a trap in looking too often...

 

I just went in and updated my log. I almost never look at it. That's probably not so good because it's more of a list of resources than a log. And obviously I'm not good at remembering my resources!

 

You do know you can make a progress log on here and nobody can post on it but you, right? Bad thing is that after a certain time, you can't change it or get rid of it without asking a mod to do it. Good thing is it's hard to lose.

 

Yes, the trap of looking back too much. I went through a time of doing that, but don't so much any more. Mindfulness helps to keep me in the present, a place I almost never spent time in before!

 

One interesting thing about the expressive journaling (in the chronic pain entry) is you are supposed to write it out by hand and then immediately tear up what you wrote! I've done it a few times. I have to look more into that to make sure I'm doing it right. It's a certain kind of journaling, not a regular journal. Now I can always find the link to his program because it's in my progress log. If I remember I have a progress log. Sleep deprivation+benzos=dementia!

[[an...]]

Hi, I've been on K for 6mos. Prior to that, I had been pretty much CT by a hospital because 30+ years of prescribed, used as directed Xanax suddenly stopped working. I've had two unsuccessful K tapers ( see my history. Doc tried to wean me too fast). It has been 5 weeks since I went back up to my original dose of K ( 0.5mg every 6 hrs.). I have planned a 3% liquid microtaper due to the many decades I have been kept on a benzodiazepam. My question to the long hold group is this......How do I know when I'm ready to beging my micro liquid taper?  I am having more and more windows since going back to my original K of 0.5mg 4X/day. Just had five day window followed by an uncomfortable day then another window today. Ugh. Sorry if I'm being repetitive. My fear is that if I wait too long, the K will begin to lose effectiveness and I do not want to have to up from my original dose. Worried because I've already been on K 6 months. Knowledge, experience, support all welcome.

Grateful in advance,

Mellowplease

 

Hi Mellow,

 

I agree with Lynn and Valley. I always know when I am ready to cut again if I have felt good for at least a couple of weeks. 

 

Good luck with the taper.

Anne

[[Ca...]]

My journal gets jealous of my blog...!!!

Especially tonight...

 

[[...]]

Thank you Gard for posting that link , Peapure looks interesting .....I notice Amazon has a pure form in powder , $31 for 24 gms. I wonder if it's as effective as the one from the Netherlands , it seems to be just the pure form , no additives.

Here is a link that has some info on LDN , also used for pain management , with some success. I have been taking 2 mg, it's not yet effective enough so I am going to gradually increase my dose to 3 mgs.

Valley also is/ was taking LDN ......

Love, MiYu 

 

https://painsandiego.wordpress.com/category/toll-like-receptor/?iframe=true&preview=true/feed/

[[Ca...]]

Thank you Gard for posting that link , Peapure looks interesting .....I notice Amazon has a pure form in powder , $31 for 24 gms. I wonder if it's as effective as the one from the Netherlands , it seems to be just the pure form , no additives.

Here is a link that has some info on LDN , also used for pain management , with some success. I have been taking 2 mg, it's not yet effective enough so I am going to gradually increase my dose to 3 mgs.

Valley also is/ was taking LDN ......

Love, MiYu 

sorry to but in..  but i also saw LDN in a ncbi paper, for gastric regulation... -they stated it has many positive off label uses...

Thats all... ta ta...

[[...]]

Thank you Gard for posting that link , Peapure looks interesting .....I notice Amazon has a pure form in powder , $31 for 24 gms. I wonder if it's as effective as the one from the Netherlands , it seems to be just the pure form , no additives.

Here is a link that has some info on LDN , also used for pain management , with some success. I have been taking 2 mg, it's not yet effective enough so I am going to gradually increase my dose to 3 mgs.

Valley also is/ was taking LDN ......

Love, MiYu 

sorry to but in..  but i also saw LDN in a ncbi paper, for gastric regulation... -they stated it has many positive off label uses...

Thats all... ta ta...

You're not butting in CT , no worries 

Go to the LDN research site if you are up to it ... You can find a list there of all the many off label uses it has been shown to help. It is the same drug as used in larger doses for I beleive opiate WD , but it has a very different use in low doses, it temporarily blocks opoid receptors , for a couple of hours , and this causes the brain to flood the body with endorphins , the LDN leaves the body in a couple of hours , with as yet no known side effects. You cannot take it if you are taking any type of opoid med though .

 

Cheerio mate 

[[ga...]]

Thank you Gard for posting that link , Peapure looks interesting .....I notice Amazon has a pure form in powder , $31 for 24 gms. I wonder if it's as effective as the one from the Netherlands , it seems to be just the pure form , no additives.

Here is a link that has some info on LDN , also used for pain management , with some success. I have been taking 2 mg, it's not yet effective enough so I am going to gradually increase my dose to 3 mgs.

Valley also is/ was taking LDN ......

Love, MiYu 

 

https://painsandiego.wordpress.com/category/toll-like-receptor/?iframe=true&preview=true/feed/

 

Thanks, Miyu! I've amended my post to mention there is now a USA manufacturer. Can you give me the link to the amazon product? I know the US pharmacy that was importing it from the Netherlands was made to stop by the FDA about a year ago. Not sure what to make of this new development. Maybe they will leave a USA company alone? Maybe it's easier to stop something at the border than shut down a manufacturer? I'd like to compare the amazon product to the European product. The shipping from the Netherlands is so darned expensive!

 

I also added your link to my post on pain in case anybody wants to dig into the glial cell topic further. One of the actions of PEAPure is believed to be impacting glial cells. But, for the life of me, I can't figure out what they are talking about in all of these biochemistry papers.

 

Gard

[[...]]

Gard ..... The Amazon product is called " PEA powder" by FE health products , fulfilled by Amazon. Pure PEA powder made in the US. Sorry I couldn't figure out a link from my IPad App. But you should be able to find it if you search PEA powder on the Amazon site .

MiYu

 

Ps anyone have any experience with this burning skin thing ? , it's not just skin, it's my flesh too.

It must be a benzo WD symptom , though it doesn't seem so common , I Havent found anyone who has it non stop. 

Gard , I don't know if it would be considered neuropathy? I wonder of the PEA would help it?

[[ga...]]

Gard ..... The Amazon product is called " PEA powder" by FE health products , fulfilled by Amazon. Pure PEA powder made in the US. Sorry I couldn't figure out a link from my IPad App. But you should be able to find it if you search PEA powder on the Amazon site .

MiYu

 

Ps anyone have any experience with this burning skin thing ? , it's not just skin, it's my flesh too.

It must be a benzo WD symptom , though it doesn't seem so common , I Havent found anyone who has it non stop. 

Gard , I don't know if it would be considered neuropathy? I wonder of the PEA would help it?

 

Oh wow, I found several products with similar chemical names. What I get is called Palmitoylethanolamide. Just that in a gelatin capsule, nothing else added. And it is called PEA-opt certified. I will have to check out what that means.

[[ga...]]

Here's what the snail is trying right now. I am cutting 5 days and holding 2 days. My total cut rate is equal to about 2.5%/month.

 

If I can keep this up for 6 weeks, I will be at a milestone. I will both eliminate one whole L capsule, and I will be at my starting place. That is, my L dose (25mg) will equal what my first ever dose of X was (.5mg). So I will be at what should have been my starting place of my taper if my psych nurse hadn't kept thinking more was better and upping my dose.

 

Makes me nervous just thinking about actually being all the way back to the "beginning" before summer!

 

I hereby promise I will base my taper on symptoms and not my desire to reach this milestone in 6 weeks! When I do manage to reach it, I intend to put in a nice long hold to celebrate.

 

Gard

[[Ca...]]

Here's what the snail is trying right now. I am cutting 5 days and holding 2 days. My total cut rate is equal to about 2.5%/month.

 

If I can keep this up for 6 weeks, I will be at a milestone. I will both eliminate one whole L capsule, and I will be at my starting place. That is, my L dose (25mg) will equal what my first ever dose of X was (.5mg). So I will be at what should have been my starting place of my taper if my psych nurse hadn't kept thinking more was better and upping my dose.

 

Makes me nervous just thinking about actually being all the way back to the "beginning" before summer!

 

I hereby promise I will base my taper on symptoms and not my desire to reach this milestone in 6 weeks! When I do manage to reach it, I intend to put in a nice long hold to celebrate.

 

Gard

I suspect that is a Great plan, from a smart, informed and determined person...

Best wishes..!!!

[[no...]]

Gard ..... The Amazon product is called " PEA powder" by FE health products , fulfilled by Amazon. Pure PEA powder made in the US. Sorry I couldn't figure out a link from my IPad App. But you should be able to find it if you search PEA powder on the Amazon site .

MiYu

 

Ps anyone have any experience with this burning skin thing ? , it's not just skin, it's my flesh too.

It must be a benzo WD symptom , though it doesn't seem so common , I Havent found anyone who has it non stop. 

Gard , I don't know if it would be considered neuropathy? I wonder of the PEA would help it?

Hi M Yes, I have it and have had it for ages, its just one of my worst symptoms, I can't find any relief and I'm too darned scared to take any supplements, half a paracetamol (acetaminophen) made me feel worse, and CBD oil was hell so I've not tried anything since.

 

 

 

Love Nova xxx :smitten: