The Long Hold Support Group

[[fr...]]

I'm right there in the chronic pain group.  Still on pain meds and muscle relaxer which do help but the burning neuropathic pain is new since tapering valium.  I don't know which is from what but only know it all sucks and I'm so over it.  I know my knees hurt horribly and no reason for them to be so sore so I do think the pain here is w/d related.  I had a less than horrible day yesterday but naturally today burning is awful.  Nausea back also.  Hope we all can keep going forward and onward, this is really so hard to figure out.  Poor V, I think everyone looks to you as having all the answers and we all know that there is no one answer for us all.  We are all so different.  I only pray we all get relief one day and this can come to an end.  Good luck with your taper V and Lynn and all others who are resuming cutting.  I might do it myself, at 5 months I am just getting worse.

[[Pl...]]

I'm right there in the chronic pain group.  Still on pain meds and muscle relaxer which do help but the burning neuropathic pain is new since tapering valium.  I don't know which is from what but only know it all sucks and I'm so over it.  I know my knees hurt horribly and no reason for them to be so sore so I do think the pain here is w/d related.  I had a less than horrible day yesterday but naturally today burning is awful.  Nausea back also.  Hope we all can keep going forward and onward, this is really so hard to figure out.  Poor V, I think everyone looks to you as having all the answers and we all know that there is no one answer for us all.  We are all so different.  I only pray we all get relief one day and this can come to an end.  Good luck with your taper V and Lynn and all others who are resuming cutting.  I might do it myself, at 5 months I am just getting worse.

 

Free,

 

You also have the muscle nerve burning nausea feeling too?  This is kind of new to me with that feeling but I would get it in spurts... Now its extremely intense....

 

That's why I still do tiny little cuts... Like a line or two on a syringe hold some days.... Keep it moving.... I don't know how much longer I can keep doing this without a complete breakdown.....

 

No one around me understands... I was at my moms yesterday and I didn't want a guest there to see how sick I was ..... I believe the heat was making me so much more ill....I briefly told him I had muscle and nerve pain that was overwhelming and spiking my anxiety because he couldn't understand why I looked so forlorn.... I don't like to tell anyone but my immediate family who knows the situation...

 

He said it was all in my head ..... i was infuriated and felt so alone in this.....I wanted to so much to let him feel what I was feeling he would have jumped off a bridge...not only can he not feel the pain but you can SEE the nerve issues clearly on my face its that severe....not to mention the mental torture...

 

Sorry for the rant...

 

I had to leave....(

[[la...]]

Please....I am so sorry to hear that you are suffering so badly...a suggestion, you may want to get Vit. B 12 checked

 

 

to all the rest I cut this morning...I am sorry but 5 months is long enough and I can  not sit idle waiting for a miracle especially since I am NO better at all

 

I need to get off this poison and I was hoping to do so from a more stable place...but for me that's not going to happen.

 

Liz- I am sorry that you are still in so much pain, and forgive me if I have offended you in some way and that's why you have not answered my PM's

Free- I know we tried....but as I said today is 5 months and I need to get back on the proverbial HORSE and start my wild ride of tapering

 

I will still come here and check on you all and update as I go along

 

plan is .5mgs off every 2 weeks until I hit 4 mgs  then .25mgs 

 

SO today I am at 6.5mgs  whoo hoo  its going to take  over 2 months just to get to 4 mgs.

 

Praying for you all and I ask that you pray for me

[[Pl...]]

Please....I am so sorry to hear that you are suffering so badly...a suggestion, you may want to get Vit. B 12 checked

 

 

to all the rest I cut this morning...I am sorry but 5 months is long enough and I can  not sit idle waiting for a miracle especially since I am NO better at all

 

I need to get off this poison and I was hoping to do so from a more stable place...but for me that's not going to happen.

 

Liz- I am sorry that you are still in so much pain, and forgive me if I have offended you in some way and that's why you have not answered my PM's

Free- I know we tried....but as I said today is 5 months and I need to get back on the proverbial HORSE and start my wild ride of tapering

 

I will still come here and check on you all and update as I go along

 

plan is .5mgs off every 2 weeks until I hit 4 mgs  then .25mgs 

 

SO today I am at 6.5mgs  whoo hoo  its going to take  over 2 months just to get to 4 mgs.

 

Praying for you all and I ask that you pray for me

 

Lainey... Thank you for the advice and bless you...

[[ly...]]

Wow.  I am so very sorry for those of you in so much pain.  I wish there was an answer, some medical research, anything.  I'm reluctant to post on my recent cut.  I don't want to cause anyone further upset and only wish that you were having the same experience that I am.  The only thing that I can think of is that my history is so straightforward - basically one benzo and one taper.  And also, genetic differences that probably play a big part.

 

You are frequently in my thoughts - every time I think of this nightmare, which is about 50 times a day.

 

:smitten:

[[Pl...]]

Wow.  I am so very sorry for those of you in so much pain.  I wish there was an answer, some medical research, anything.  I'm reluctant to post on my recent cut.  I don't want to cause anyone further upset and only wish that you were having the same experience that I am.  The only thing that I can think of is that my history is so straightforward - basically one benzo and one taper.  And also, genetic differences that probably play a big part.

 

You are frequently in my thoughts - every time I think of this nightmare, which is about 50 times a day.

 

:smitten:

 

Thank you Lynn....... I feel hopeless....your support means everything..... Thank you thank you thank you...

[[Va...]]

So sorry for the struggling free, nova, lainey, please and liza. Holding worked very well for me. I did go the full 6 months just to be sure. The last very small cut I made brought on some very minor sxs yesterday afternoon but I don't seem to have any today although I am being overly cautious.

 

If the stabilization pattern isn't promising during a hold, you can choose either to updose slightly or try a small cut to see if you feel any better. Sometimes the psychological benefit of moving forward will at least improve motivation. I wish I had all the answers. The only answer I have is that allowing your CNS to adjust adjust and heal from the damage of tapering only makes sense. The problem is accounting for all the outliers or those that aren't in the norm for one reason or another. It may be other life stressors, additional health issues, metabolism, etc that make it more difficult for some than others. I do know it can take longer than 6 months for some to stabilize but have only seen a few with that kind of patience.

 

I wish everyone a great day! We'll all beat this eventually.  --V

[[fr...]]

  Yes, I have the burning neuropathic pain and its the most awful thing.  I don't think anyone can fathom how awful it truly is unless they experience it.  I should try vitamins but sometimes supplements rev me up but who knows, eating sometimes revs me up.  Lainey, I wish you the best luck with the cuts , let us know how it goes.  Lynn, never feel bad that you are doing so well, we are all happy for you I'm sure.  Its so hard but only way off is through it all so I pray we all have a better time coming up.  I have found nothing to relieve it Please so can't offer any help.  Dr. just throws more drugs at me and I dont take them.  Gabapentin etc.  So I just take it one day at a time.  Hope you feel better soon but you are still cutting, maybe yo need to hold for a while and things will smooth out.

[[be...]]

Oh my heart just aches for those of you that are suffering so, I know every thing you are feeling as I have felt it twice during my failed tapers, so that is why it hurts, because I know nothing I can say will make it better, what made it better for me may not work for all of you, whatever any of you decide to do is what you must do, just a word of caution, do not drop large amts, and go with smaller cuts and see how it goes, especially since having so many sx's, the thing about tapering you can have a plan but honestly it is never set in stone, as our Brain will do its own thing. I have all of you in my thoughts and I Pray only wellness for all.

[[Va...]]

Hopefully this will help some struggling. --V

 

It's pretty typical in a situation where one has pushed the tapering a bit too hard and gotten into a bad patch, for it to not resolve as quickly as it has in the past. In fact this is a pretty normal pattern: we taper along and things seem to go okay, and then symptoms start to sort of build up and not resolve quite as fast as usual, and then we sort of "hit the wall." That's when it's time to stop tapering!

 

(Well, actually, if we notice the "buildup and not resolve as fast" phase, that's actually the best time to stop and hold, but I don't know about you, but I'm usually too impatient for that.)

 

You've tapered pretty fast--not unreasonably, but not slowly. Now you're down to a significantly lower dose than where you started. It might be time for a nice long hold to allow your body and nervous and endocrine systems time to catch up, heal and rebalance.

 

It sounds like that's what your body may be telling you, and your body is the only real expert on how you need to taper.

 

It's normal to feel pessimistic and bleak during a bout of withdrawal symptoms, even for a really positive person during an otherwise successful taper. It's like we just lose our ability to see the good side of things, like things have never been good, even though logically we know they must have been. That's just another symptom.

 

Giving your body time to really restabilize and get solid now will make your future taper much easier.

 

And when you're ready to taper again, I would consider taking intermittent longer holds of several weeks from time to time.

 

Basically, the takeaway: What you're experiencing is normal. "

[[Va...]]

Oh my heart just aches for those of you that are suffering so, I know every thing you are feeling as I have felt it twice during my failed tapers, so that is why it hurts, because I know nothing I can say will make it better, what made it better for me may not work for all of you, whatever any of you decide to do is what you must do, just a word of caution, do not drop large amts, and go with smaller cuts and see how it goes, especially since having so many sx's, the thing about tapering you can have a plan but honestly it is never set in stone, as our Brain will do its own thing. I have all of you in my thoughts and I Pray only wellness for all.

Thanks BG!  I'm following your advice.  --V

[[an...]]

I am also very sorry for the people here that are not getting any relief.  There are many factors that can affect withdrawal. For those that are still suffering with no improvement,  I agree with Valley that a small up dose or a cut might be something to think about. There are some people that need to push through and get off the drug as safely and quickly as possible. I have heard from others that they felt better as they lowered their dose.  In my case, the up dose is working very well.  It was a small increase in dosage, and I have been holding for about 6 weeks.  I am feeling much better now. In fact this is the best I have felt throughout this taper.  I experience "blips" (like Begood) here and here, but things are much better than they were back in May and June.  Like Lynn, I am tapering one benzo and it is the only drug, not including my beta blocker, that I have experience with.  When there are other medical issues and multiple drugs involved, it is difficult to determine what could be causing the problems. Most likely a combination of everything. I am certainly not recommending that what seems to be working for me will work for others. I too wish there was a protocol that could guarantee relief, but all we have is our own experience and the experiences of others on the forum.

 

We will continue to support one another no matter what.  Peace and healing to all.

 

Anne 

[[Pl...]]

V, free, begood, Lainey, lynn (and Liza even though you haven't answered yet) and if i missed somebody (sorry)I want to thank you all for the unwavering continued support from the bottom of my heart and soul....

 

I also want to thank nova 1 as I read her posts and they are hopeful considering everything she has been through as well.... You are all a blessing....

 

Liza.... Just want you to know I get how you are feeling very much.... I'm not certain but I think you switched dosing to milk awhile back? I'm really starting to wonder if that is a part of my problem as I have heard quite a few people on kolonopin talk about having problems with that..... I was going to try the pills again just to see but am so afraid that even that brief change will put me in a tailspin ...And the heat absolutely ramps up everything....

 

V and others - I wish there was a way to know if what I am experiencing is side effects, adverse reactions, ativan withdrawal still ( that I know is a big part of it).... This is what makes me hesitate on very long holds... It's probably A combo of everything.....

 

Trying to keep a balancing act going to reduce some symptoms (such as heavy sedation) and not escalating existing physical ones is extremely challenging...at least that's where I find myself... :'(

 

thank you all again for being here so much and with such kindness.....I just can't say it enough...

 

 

[[ba...]]

Question: Do all doses need to be equal?

 

I had to up dose, and am taking a larger dose 1, smaller and equal dose 3 and 4, and  a smaller dose than those at dose 4.

 

Was keeping all doses equal through my taper (almost 2 months) , but as the day went along, I got worse and worse. When I was dosing higher in the morning, I did get more stable later in the day. Also, was continuing to decline in sanity at almost 2 months in, I had a psychotic episode, and knew I had to up dose. This was 4 days ago.

 

My script is written for me to take a larger dose for my first med of the day, then start bringing the remaining doses down.  The logic behind it is to get more medication in the am, after not having any for about 8 hours over night, to get a jump on the increased levels of stress output in the morning, with the idea that this will set me up for the remaining doses to be effective.

 

I dosed like this for a long time prior to tapering.

 

I will start again with tapering after I get through the next week. I have house guests coming and a major dental procedure next week, both huge stresses. I also discontinued use of my CBD cannibinoids, as my doctor asked me to. He informed me it is office policy to not prescribe scheduled medication if a patient is using a controlled substance, in this case cannibinoids, even though they are completely legal in Colorado. The last thing I need is to give my physician cause to fire me.

 

The up dose is helping, I am still  feeling nasty, but I have to be as functional as I can for the next week, I can't be having hallucinations. A friend who is also tapering told me each dose had to be equal to stabilize the CNS. This could be why I am still rather fubar.

 

Need advice from the pro's in here.

 

Also, will start tapering AGAIN after I get through next week.

[[Pl...]]

Question: Do all doses need to be equal?

 

I had to up dose, and am taking a larger dose 1, smaller and equal dose 3 and 4, and  a smaller dose than those at dose 4.

 

Was keeping all doses equal through my taper (almost 2 months) , but as the day went along, I got worse and worse. When I was dosing higher in the morning, I did get more stable later in the day. Also, was continuing to decline in sanity at almost 2 months in, I had a psychotic episode, and knew I had to up dose. This was 5 days ago.

 

My script is written for me to take a larger dose for my first med of the day, then start bringing the remaining doses down.  The logic behind it is to get more medication in the am, after not having any for about 8 hours over night, to get a jump on the increased levels of stress output in the morning, with the idea that this will set me up for the remaining doses to be effective.

 

I dosed like this for a long time prior to tapering.

 

I will start again with tapering after I get through the next week. I have house guests coming and a major dental procedure next week, both huge stresses. I also discontinued use of my CBD cannibinoids, as my doctor asked me to. He informed me it is office policy to not prescribe scheduled medication if a patient is using a controlled substance, in this case cannibinoids, even though they are completely legal in Colorado. The last thing I need is to give my physician cause to fire me.

 

The up dose is helping, I am still  feeling nasty, but I have to be as functional as I can for the next week, I can't be having hallucinations. A friend who is also tapering told me each dose had to be equal to stabilize the CNS. This could be why I am still rather fubar.

 

Need advice from the pro's in here.

 

Also, will start tapering AGAIN after I get through next week.

 

Bad dove.... That was exactly how I was dosing just like you with my first dose of the day being the highest (thats when my anxiety was the worst - morning time) and then the other doses being lower during the day ( this was in pill form).... it was not so bad that way and your post just made me remember that....

 

My complaint later on was that it was too sedating and was suggested I divide it out in 3 equal doses during the day but its still pretty bad....

 

My cog fog is a little bad right now but are you still dosing the highest dose the first time of the day and the others are lower? At least that's how I understood it.... You got me wondering if I should go back to that as I think that may have actually worked better for me too instead of having it constantly in the system every 8 hours with 3 separate doses.....

 

I guess people do it that way because of interdose withdrawal too but if you are still getting the same amount regardless during the day not sure how that works...

 

I'm so glad you brought this question up if its actually necessary to have it equalled out that way ...

 

thank you for that insight....

 

Hope someone can answer....

[[ly...]]

Baddove,

 

Unless you are paradoxical and feel better as you get lower, I don't understand why you would taper while unstable(?).  I don't think you have been on a consistent dose for any length of time over the past couple of months(?).  I think, again unless paradoxical, that in order to have a chance at stabilization you have to be on a consistent dose for a long period of time - especially with a complicated taper history.

 

As to uneven dosing, when I had larger and smaller doses I always took the larger at night - to carry me the longer time period until morning and my next dose.  Who knows - trial and error I suppose.

 

All of the above, just my thoughts.  Sorry you are doing so poorly.

[[Va...]]

Baddove,

 

Unless you are paradoxical and feel better as you get lower, I don't understand why you would taper while unstable(?).  I don't think you have been on a consistent dose for any length of time over the past couple of months(?).  I think, again unless paradoxical, that in order to have a chance at stabilization you have to be on a consistent dose for a long period of time - especially with a complicated taper history.

 

As to uneven dosing, when I had larger and smaller doses I always took the larger at night - to carry me the longer time period until morning and my next dose.  Who knows - trial and error I suppose.

 

All of the above, just my thoughts.  Sorry you are doing so poorly.

Completely agree lynn.   

[[Pl...]]

Baddove,

 

Unless you are paradoxical and feel better as you get lower, I don't understand why you would taper while unstable(?).  I don't think you have been on a consistent dose for any length of time over the past couple of months(?).  I think, again unless paradoxical, that in order to have a chance at stabilization you have to be on a consistent dose for a long period of time - especially with a complicated taper history.

 

As to uneven dosing, when I had larger and smaller doses I always took the larger at night - to carry me the longer time period until morning and my next dose.  Who knows - trial and error I suppose.

 

All of the above, just my thoughts.  Sorry you are doing so poorly.

 

I thought about the larger dose at nighttime too...  Maybe I could combine two doses at night or take them closer together and then just take the lighter one during the day.... I'm always complaining about over sedation so maybe? 

 

I'm just afraid my brain has gotten used to this schedule and it will backfire....

 

Sorry bad dove I didn't mean to cut in it seems that both our experience is kind of similar with dosing time anyway.....

[[ba...]]

Thanks for all the input folks.

 

Does stable dosing mean a constant daily tally, or equal amounts of medication each dose?

 

Essentially, I am doing this (high am dose, next 3 lower) as well as reinstating to 5.75, and dropping the CBD cannibinoids, because my physician told me too.

 

And, it is true, during my 2 months of taper, I kept experimenting, it sucked all the way through.

 

I still don't feel great, I was at tolerance long before I started my taper. And, I am still finding the dosage for doses 2,and 3 via my gram scale. I know what number is too high, and what is too low, searching for the weight that is the best. I am in a pretty narrow range, so closing in.

 

Dose 4 is my smallest.

 

I want to do things right, and get as stable as I can, then start the taper again in a much more effective way that doesn't send me into hard wd.

 

I also have had it in my head that I should start tapering again as soon as possible, perhaps i should hold? I really don't know what i am doing. I just know xanax sucks, I hate it, and I want off.

 

This is why I LOVES all of you good people in here.

 

 

[[ly...]]

 

 

Consistent dose = same total amount every day

 

Stable =  feel consistently well/good for a few weeks

 

You worry me stating you will taper next week.

[[ba...]]

Thanks Lynn. Tomorrow, I will do the same dose each time. If it feels horrible, will let everyone know. Advise me on how long to hold. I am back up to my starting dose, that's why I felt like I should taper. Also, although I feel better, I am still not ok. Another reason I thought this should be temporary.

 

Mostly, I  am so concerned with being functional why my company is here. It is my daughter, her husband and their 2 babies. I want to be able to be sane enough to enjoy their company, and not be shut up in bed most of the time.

 

Also, the dental thing. I couldn't go to the appointment in the condition I have been in.

 

 

[[an...]]

Baddove,

 

I agree with Lynn and Valley.  You need to take the same dose each day. Once you have decided on that dose, holding at that dose for a few weeks before you start to taper is a good suggestion.

 

Anne

[[ba...]]

Will do, Oh wise ones. Thank you. Will also update as I go along.

[[be...]]

Baddove,

 

I agree with Lynn and Valley.  You need to take the same dose each day. Once you have decided on that dose, holding at that dose for a few weeks before you start to taper is a good suggestion.

 

Anne

I also agree, one thing I have learned while going through this I have to Accept the Process, it goes as fast as it can, and continual changes is confusing to our Precious Brains, it needs the time to regroup, it is gonna get really confused. I am thinking you want to stay at doseage as advised but the Benzo lies are working on you and I know Valley has literature how this comes in and wants to trip you up. We will be here for you.

[[Va...]]

Thanks for all the input folks.

 

Does stable dosing mean a constant daily tally, or equal amounts of medication each dose?

 

Essentially, I am doing this (high am dose, next 3 lower) as well as reinstating to 5.75, and dropping the CBD cannibinoids, because my physician told me too.

 

And, it is true, during my 2 months of taper, I kept experimenting, it sucked all the way through.

 

I still don't feel great, I was at tolerance long before I started my taper. And, I am still finding the dosage for doses 2,and 3 via my gram scale. I know what number is too high, and what is too low, searching for the weight that is the best. I am in a pretty narrow range, so closing in.

 

Dose 4 is my smallest.

 

I want to do things right, and get as stable as I can, then start the taper again in a much more effective way that doesn't send me into hard wd.

 

I also have had it in my head that I should start tapering again as soon as possible, perhaps i should hold? I really don't know what i am doing. I just know xanax sucks, I hate it, and I want off.

 

This is why I LOVES all of you good people in here.

Baddove one of the things that withdrawal causes is the idea that we need to hurry and get off to feel better when exactly the opposite is true. Tapering while unstable is never a good idea IMO. The feeling we all get is illustrated in the following:

 

"A sense of feeling panicked and like you need to rush and do something-something-anything-anything about your withdrawal symptoms is actually a classic symptom of withdrawal itself. It's very important to learn to resist that urge. The best thing you can do is usually nothing at all, just support your body's healing by good diet, gentle exercise, meditative breathing if possible, and a regular schedule of sleep/wake/eat etc. "

 

Hope that helps a little.  --V