The Long Hold Support Group

[[St...]]

I was a bit upset about the comment made about what Baylissa said about long cross overs....so I emailed her, she responded and said she is not against long acting benzos at  all,  she does not give out tapering advice and the most she can remember saying is that crossing to v did not work for her because she was already in serious tolerance withdrawal.  I am crossing to valium right now, so wanted to clarify that with her....I know we all have benzo brains right now and are sponges for fear like crazy at least I know I am.  I felt better after receiving her email.  I think like anything else, some things work for some people, and some things don't and we just have to do what we think is best.  I hope this doesn't come off as being critical or condemning to anyone at all, that is not what I am doing, I was just a bit upset, and afraid I was going through all this crossing over pain all for nothing and needed to find out so I could calm down.  Just thought I would post here and hope it helps someone else....I am in Baylissa's community and it is great, she is so helpful and responds so quicklyl  I love her....Hoping and sending light and love to every body here....I have a long valium taper ahead of me after crossing and not looking forward to it at all, but nothing to do but move forward is there ?  Stella

[[He...]]

FREEME,

 

THANKS FOR YOUR SUPPORT. I too have spine issues, neck and lumbar. I had surgery to relieve a PINCED sciatica nerve and pain down my leg last December. It was 100% successful. But when this lower back pain started recently I was so afraid that my spine was acting up again. But thank goodness, I have been told that this lower back pain is a classic withdrawal sfx. Even had an MRI that showed everything is fine in my spine.

 

Actually it comes and goes so randomly, and it is more like a weak muscle than actual pain.  I am finally beginning to be convinced that it is benzo related. Feeling pretty confident about that is half the battle. Fear makes things so much worse.

And tonight, the back pain is gone. ITS JUST CRAZY!  Same thing happens with my neck. It is really bad for about three days, then it's gone for two weeks. Then it returns, Etc. .  CRAZY!

 

I'm so sorry that you are have neuritis pain in your tongue. These Benzos are absolutely unpredictable. I hope you find relief.

 

Here's a weird thought off the top of my head. There is a topical pain killer available that is used for babies when they are teething. I used to rub it on my children's gums when they were babies and teething. I forgot what it is called but it was over the counter in most pharmacies. Do you think that might give you relief if you put it on your tongue? Just a thought. Might be a crazy idea?

 

Heathcliff

[[li...]]

Stella Bee I am livid!!! I paid for a counseling session with Baylissa last year and I know what I heard. She said she never and prof Ashton would have never had me cross from Ativan to klonopin. I know what I heard. It's possible because she meant I was doing well as I updosed on the ativan to get stable so it made no sense to cross. I wish I had recorded the call. She also said Ashton was unsure about slow tapers that take years. I asked what her rationale was and she said she wasn't sure but that Ashton didn't want us on these drugs too long. Well of course we don't want to be. I was told by many including my doctor that it would be much much better to cross to K or V--I didn't come up with that idea on my own.

 

Lynn I am considering an updose from where I am at 1.19 mg to 1.25 mg K because I at least had a few days at 1.25 when I could drive and function in the afternoon. I just really thought the hold would pull me out of it but I'm really struggling the last week and a half. But I can't make myself do it yet because there's no guarantee it will work. Some would say that then I need more. I was on klonopin years ago before my horrid back to back ativan and klonopin Ashton tapers but never more than .5 mg and only took at night. For a year I've been dissolving in milk and taking throughout the day. I expect side effects but not to feel poisoned and crazy. I would give anything to go back to ativan as someone suggested but I was told not to make more changes, my doctor says it's the worst idea to go from a longer acting to shorter acting and someone on SA said I may still be going through ativan withdrawal from the cross a year ago

 

I don't know what to do so I sit and hold and pray that what worked for do many of you will work for me and pray for divine intervention and wisdom about updosing because the crazy is getting bad. Funny thing is my doc updosed me from 1 to 1.25 September 1 and told me to stay there six months but I started tapering after 24 days because I was afraid of tolerance. Now I'm in a five month hold from crashing from removing 1% a month and wondering if there is even a chance of stabilizing. Maybe this is the best I'll get. I have no idea.

[[fr...]]

  Thanks Heath, Hope you start to feel better.  The burning isn't just my tongue, its other areas but the idea about the ambesol might be something to try  Thanks for thinking of me.

[[an...]]

Liza,

 

You can always try the up dose and see if things improve.  If not, you should be able to go down to where you are now very quickly. When I up dosed last month, I started at 0.25 mg.  I did not seem to be working, and I began to quickly decrease back down.  Once I hit 0.204 mg, I started to feel better.  The up dose might or might not work for you--it is a risk.  I am taking Ativan which has a shorter half-life than K, so I was able to tell right away.  As I said before, I did not want to become dependent on the higher amount if I did not improve. 

[[St...]]

Sorry, I didn't mean to cause more distress...I will stay out of it.  Liza, I pray for you to find your way through this horrid time....I was hoping to help not hurt.....Stella

 

[[Va...]]

I believe the conventional wisdom regarding crossovers is that it is recommended to taper from the original benzo "if possible". Some are not able to taper the original because of inter dose withdrawal. It's impossible for them to taper off the original so the crossover is a great tool in getting off.

 

From what I've read, most experts agree that if you can taper off the original benzo, it's much less complicated (crossovers take time, and then one has to stabilize on the new benzo while withdrawing from the original). This doesn't mean that a crossover is bad. It just means that it is easier to taper off the original benzo if it can be done.

 

Reinstatement however seems to work best when using a long acting benzo based on what I've read so far. In a nutshell, I don't think anyone should stress over switching to a long acting benzo. In the long run, all should be able to successfully taper off regardless of whether they crossover or not. For any stressing over this issue, just breath and relax. You're all going to make it off.  --V

[[Va...]]

FREEME,

 

THANKS FOR YOUR SUPPORT. I too have spine issues, neck and lumbar. I had surgery to relieve a PINCED sciatica nerve and pain down my leg last December. It was 100% successful. But when this lower back pain started recently I was so afraid that my spine was acting up again. But thank goodness, I have been told that this lower back pain is a classic withdrawal sfx. Even had an MRI that showed everything is fine in my spine.

 

Actually it comes and goes so randomly, and it is more like a weak muscle than actual pain.  I am finally beginning to be convinced that it is benzo related. Feeling pretty confident about that is half the battle. Fear makes things so much worse.

And tonight, the back pain is gone. ITS JUST CRAZY!  Same thing happens with my neck. It is really bad for about three days, then it's gone for two weeks. Then it returns, Etc. .  CRAZY!

 

I'm so sorry that you are have neuritis pain in your tongue. These Benzos are absolutely unpredictable. I hope you find relief.

 

Here's a weird thought off the top of my head. There is a topical pain killer available that is used for babies when they are teething. I used to rub it on my children's gums when they were babies and teething. I forgot what it is called but it was over the counter in most pharmacies. Do you think that might give you relief if you put it on your tongue? Just a thought. Might be a crazy idea?

 

Heathcliff

My spinal issues were the reason I got put on the stupid benzos and planned to be on them for life along with high dose opiates. Unfortunately the spinal pain not only got worse over the years, but the pain spread to several other areas of my body and eventually shut my adrenal system down. I had no idea at the time that it was the drugs causing all of these problems. I've spent thousands of dollars at the ER for what I now know we're benzo related side effects. It took me 2 years to finally figure out it was the drugs causing most of the problems by researching side effects.

 

The point being, I have no idea what pain is from my original pain condition and what is from withdrawal. I'm finding a lot of the pain is withdrawal related as it comes and goes so any treatment for the original condition has to be put on hold until I'm finally off.

 

I empathize with all who have chronic pain. I'm sure we'll all be glad when this is over! --V

[[fr...]]

  I am right in the middle of this nightmare V.  I was put on and am still on these meds for chronic spinal pain etc.  They planned on me always taking them also and still do.  I am the one wanting to taper off.  All they can offer is to do a CT in house type deal which I will never do or do a crossover to Suboxone but that is just for the pain and the pain med I am on.  I am only on Norco so I would never take such a powerful drug to get off 60 mg. of norco a day. They keep trying to push oxycodone or other drugs at me also.  They truly care about me but are just as clueless as most Drs.  It is my Primary that is tapering me off the valium first.  Then the Soma  and finally the Norco.  I had my surgery and it helped some.  I do have very bad spinal issues and needed the surgery but the drugs have now ruined my life.  I am trying but it is so hard right now.  Good luck to all of us, we will get there, can't give up hope. 

[[Va...]]

  I am right in the middle of this nightmare V.  I was put on and am still on these meds for chronic spinal pain etc.  They planned on me always taking them also and still do.  I am the one wanting to taper off.  All they can offer is to do a CT in house type deal which I will never do or do a crossover to Suboxone but that is just for the pain and the pain med I am on.  I am only on Norco so I would never take such a powerful drug to get off 60 mg. of norco a day. They keep trying to push oxycodone or other drugs at me also.  They truly care about me but are just as clueless as most Drs.  It is my Primary that is tapering me off the valium first.  Then the Soma  and finally the Norco.  I had my surgery and it helped some.  I do have very bad spinal issues and needed the surgery but the drugs have now ruined my life.  I am trying but it is so hard right now.  Good luck to all of us, we will get there, can't give up hope.

Too bad there's so many like us free. I know we'll make it off. I even found getting off the narcotic actually lowered my pain. I had a choice of either upping my dose of opiates and Valium or just deciding to get off. I chose to get off. I really believe we will be in less pain once off. The drugs only work for a little while and then turn on you. I tell people they give you back your life and then take it away.  --V

[[fr...]]

  So true V.  I have taken the pain med and soma for years, like over 15 but the valium is newer.  It all went in the dumper at about 4 yrs. on ATivan.  I think it was that that tipped the scales, I was doing fine until the benzo although Soma acts like a benzo on the brain.  Oh well, live and learn. 

[[Sh...]]

Hey valley. How did you find oxy for your pain relief? I sometimes take oxy when im in the midst of this bad withdrawal as it gives me a bit of a high and takes me away from this shit. I dont take it more than once or twice a week. Im not stupid enough to get another addiction.

[[ca...]]

Hey valley. How did you find oxy for your pain relief? I sometimes take oxy when im in the midst of this bad withdrawal as it gives me a bit of a high and takes me away from this shit. I dont take it more than once or twice a week. Im not stupid enough to get another addiction.

Shamo, I just last week took some Percocet for some bad pain and like you felt a buzz and yes kinda nice but IMO better we stay away from them Narcs. as not sure how they will effect us as I have felt an up tic in s/x`s from them the next day so no more for me I am just trying to stay away from throwing anymore issues in this ! ~CD

[[Va...]]

Hey valley. How did you find oxy for your pain relief? I sometimes take oxy when im in the midst of this bad withdrawal as it gives me a bit of a high and takes me away from this shit. I dont take it more than once or twice a week. Im not stupid enough to get another addiction.

Hi Shamo. I did a ct do oxy in February but take an occasional small dose if I'm having a bad pain day. It does hep with the pain and gives a bit of relief from withdrawal but I always feel worse the day after so I don't use it much. --V

[[ca...]]

Hey valley. How did you find oxy for your pain relief? I sometimes take oxy when im in the midst of this bad withdrawal as it gives me a bit of a high and takes me away from this shit. I dont take it more than once or twice a week. Im not stupid enough to get another addiction.

Hi Shamo. I did a ct do oxy in February but take an occasional small dose if I'm having a bad pain day. It does hep with the pain and gives a bit of relief from withdrawal but I always feel worse the day after so I don't use it much. --V

Valley, I wonder why the oxy gets us in a bad place as it does not effect the Gaba. But I am done with it and just going to do my best to grit thru the pain. Hope your well ? ~ CD

[[Va...]]

Hey valley. How did you find oxy for your pain relief? I sometimes take oxy when im in the midst of this bad withdrawal as it gives me a bit of a high and takes me away from this shit. I dont take it more than once or twice a week. Im not stupid enough to get another addiction.

Hi Shamo. I did a ct do oxy in February but take an occasional small dose if I'm having a bad pain day. It does hep with the pain and gives a bit of relief from withdrawal but I always feel worse the day after so I don't use it much. --V

Valley, I wonder why the oxy gets us in a bad place as it does not effect the Gaba. But I am done with it and just going to do my best to grit thru the pain. Hope your well ? ~ CD

Hi can do. Benzos and opiates have an effect on dopamine receptors so I believe when we take opiates it exacerbates the withdrawal effect on dopamine caused by the opiates when they are withdrawn. At least that's my theory. I'm doing very well!  Hope you are too!  --V

[[ga...]]

Good Morning everyone!!

 

Lynn, I am so happy this second cut is going well for you.  Wonderful news!!

 

Heath, you do sound much better.  You will get to the end before you know it, but then again there is no rush.

 

Baddove, you will also stabilize.  Just keep holding at a consistent daily dose.

 

Begood, thank you for all of your encouraging words.  Glad to hear you are doing well.

 

Liza, I agree with your husband.  You have another few weeks before you  hit that 6 month mark.  Might as well hang in there.  You never know with these drugs.  I remember several times during this taper I was ready to up dose because of symptoms.  I would tell myself to hold on for a while longer, and then when I least expected it, symptoms would just lift.  You can always reevaluate once you hit that 6 month mark. 

 

Free, I hope you find some relief soon.  I am so sorry about the burning.  So many on the forum seem to have this problem.  You are in my thoughts.

 

Lainey, I hope things are going well with your cut.  You will make it through this. We all will.

 

Valley, I am sending good thoughts your way.  So glad to hear things are going well with this cut.

 

Gardner, I hope you are still improving.  How is it going with the Q? 

 

Please, I hope that you get relief soon from the symptoms.  I am so sorry you are going through so much pain. I wish I had an answer for you, but please know you have my support.

 

I hope everyone has windows today!!

 

Anne :smitten:

 

Hi Anne. Hope your summer is going well. I got the Q down to 17mg (or so) by dry cutting and paused. I don't think I can go lower right now. I then tried a very small cut to the L and paid for it dearly so am holding again. Turtle-chicken taper for me!

 

Gard

[[Pl...]]

Good Morning everyone!!

 

Lynn, I am so happy this second cut is going well for you.  Wonderful news!!

 

Heath, you do sound much better.  You will get to the end before you know it, but then again there is no rush.

 

Baddove, you will also stabilize.  Just keep holding at a consistent daily dose.

 

Begood, thank you for all of your encouraging words.  Glad to hear you are doing well.

 

Liza, I agree with your husband.  You have another few weeks before you  hit that 6 month mark.  Might as well hang in there.  You never know with these drugs.  I remember several times during this taper I was ready to up dose because of symptoms.  I would tell myself to hold on for a while longer, and then when I least expected it, symptoms would just lift.  You can always reevaluate once you hit that 6 month mark. 

 

Free, I hope you find some relief soon.  I am so sorry about the burning.  So many on the forum seem to have this problem.  You are in my thoughts.

 

Lainey, I hope things are going well with your cut.  You will make it through this. We all will.

 

Valley, I am sending good thoughts your way.  So glad to hear things are going well with this cut.

 

Gardner, I hope you are still improving.  How is it going with the Q? 

 

Please, I hope that you get relief soon from the symptoms.  I am so sorry you are going through so much pain. I wish I had an answer for you, but please know you have my support.

 

I hope everyone has windows today!!

 

Anne :smitten:

 

Anne... Thank you so much for your support......I'm just terrified from all the pain and horrible physical symptoms I have.... ( I don't think abnormal contractions on every part of your face will heal :'()

 

I feel horrible on he drug and trying to get off of it.... I can't win and don't know how I'm going to do this...

 

Bless you so much for being here like all the others....

[[He...]]

Hi I hate to complain, knowing that there many of you who seem to be having much worse problems than me, but I am miserable. I know you all say to hang in and I WILL GET OFF THIS DRUG. And

I am determined, don't think I am going back, I'm DEF NOT. but when will this ever end.

I do get Windows at night usually from about 8:00 and all the way till I go to sleep.

 

But I wake up every morning with pins and needles, shakes and parathesia( is that all the same thing?) it stays all day.

Neck and head pain  comes and goes.

My appetite is gone, I'm slightly nauseous  all day long.

I am fatigued.

I'm sick of this.

I have a big cry and a self pity party for myself ,by myself, practically every day. I wouldn't have anyone be exposed to me when I am like that.

 

I know you can't help me.  I Know I have to go through this to heal, and I will heal one day.  I don't even know why I am writing this. Except you people make be feel better, even if there is nothing else you can do except give me encouragement and let me know that somebody cares and I am not alone.

My adult kids don't understand how bad this is. But that's partly because I don't let on. I don't want to be a worry or a burden to them. I guess it's just the mother instinct that makes a mother want to protect her children, even when they are grown and living there own lives.

I know my husband loves me and he is putting up with this crap. It has destroying our happy summer. I never feel like going anyplace.

I can't talk to my sister too much. I always tell her I am dong ok. she lives on the east coast and she will just worry like crazy.

I have a couple of close fiends but I don't want to harp n this on the few occasions that they drag me out of the house. I don't want to "chase" them away by always talking about this.

 

So you buddies are really the only ones to whom I feel safe enough to cry my eyes out.

 

Sorry, I really feel better now that I have had a good cry, I guess females are just like that.

 

I'm sorry, I really should just delete this but I so need your support today more than ever.

 

And to all of you who are suffering along with me, I wish to god there were something that I could do to take your misery away. I know you are suffering more than me. I feel so very awful for you all. Are you listening god?

 

[[fr...]]

  Heath, You have written my story.  I am exactly the same.  I sit in the recliner most days, go from bed to there to bathroom etc.  GEt out for Dr. appt. and to grocery store with hubby because I'm too weak to go on my own.  I don't tell anyone because they just don't get it anyway. No one can fathom that we are suffering from just taking a little pill.  KNow that we are here for you, a good cry and a hand to hold on here means so much.  I suffer with burning so bad now for a year and it won't let up.  I have 3 drugs to taper, so depressing so I can't think about it too much or I panic.  Anyway, just always know its good dto post, that is what is so wonderful about this site.  Someone will always come on to help and make you feel a little better.  YOu are very low, you will be off soon and healed so hang in there.  Hope you have a window soon and it stays open. 

[[Kg...]]

Heathcliff - we all need a good cry now and then since the s/x from a taper are never ending.  It gets to all of us.  IMHO what is going on for you is that you are no longer at a therapeutic dose of the Valium.  You are only taking it now to help you taper in essence.  I know the people here disagree with me but at low doses I believe the only choice we have is to get off of the drug.  Most of us who have been where you are now felt horrible but as we managed to get off we feel better and better.  For me I could not imagine stringing out the end of my taper with long holds - it would have been torture.  Now that I am done and off I feel better than I did at the low dose that you are on.  I believe I am not alone in this.  You need to do what you can do but I will tell you that I feel better at 0 than I did at 2 mg.  Just sayin'.  Also the 4, 7 ,8 breathing saved me many a day and some light yoga and walking.  Even when I was awful I forced myself to do this and it did help. 

 

Take this one day at a time. You are almost there. 

[[He...]]

KGIRL AND FREEME,

THANKS SOOOO VERY MUCH FOR YOUR VERY FAST REPLIES WITH SUCH GOOD SUPPORT. I really needed it. You are absolutely right when you say the buddies are here whenever I need you!

 

I HAVE SOME QUESTIONS FOR K girl.

 

I see from your taper that you cut about .5  and held for about one month before cutting again each time.

That means if I cut .5 each time I could be off of this valium in about three months or less. Or  if the side effects were too much and I cut .3 I could be off of this Valium in about four months.

That sounds so wonderful. But I am afraid that it will be too big a cut for me. I am very sensitive to cuts.

 

Here's my problem,

I had no one guiding me at the beginning of my taper. I was at 7.5mg.  I went very fast . Never held more than 2,3 weeks each time I cut.  then when I got down to 1.25 all hell broke loose.  Crazy ramped up side effects.

 

Many buddies thought my fast and aggressive taper was the cause of ramped up side fx. They thought I should hold and let my brain catch up and heal . That's why I did that two month hold. I am glad I did because the sfx got less and I started to get Windows. But I have no intention of holding that long again unless I have to.

 

Now that I have completed that two month hold, I started a micro taper because I was not sure if a bigger cut would throw me back into sfx hell again.

It did not throw me into hell. (But it was only a .05 cut) but I am very afraid of a bigger cut throwing me into hell!  I guess my fear comes from what happened when I was at 1.25 and got horrible sfx in the first place and had to hold for two months.

 

I Think what is happening is that I am just getting normal side effects, (however bad they may be, as we all know)and I am just getting so sick of them and so depressed because it is taking so long!

But I am also afraid of what might happen if I make a bigger cut.

 

But now that I think about it, after this  .05 cut and two week hold is finished, I may try to cut .1 and see what happens. That's still less than a  10% cut from where I am now at 1.2mg

They say you shouldn't cut more than 10%. Especially at low doses.

But I do not intend to wait another month between each cut unless it is necessary,  I intend to listen to my body and see how I feel and either adjust the cut or adjust the holding time. I think that makes sense.

 

Do you think that makes sense?

 

Here's more  questions, I m not trying to be difficult, just trying to get more info so I make the right decisions.

 

I see you made cuts of almost 50% at the last three cuts. How did you survive that? BIn the opinion of the buddies most of them say not to cut more than 10%

When I cut 16% it threw me into hell!

 

When you made cuts and held between your cuts, how were your side effects? 

 

Did you wait for them to get any better between cuts, and DID THEY GET BETTER during the month you held before cutting again?

 

Or did you just push forward no matter what? I thought you need time to let your CNS heal.

 

And if you pushed forward no matter what, are you getting more or more difficult sfx now that you are about a month off of the Valium?

 

Thanks for taking the time to read this. I hope youknow I am not trying to negate anything you did. I am just trying to understand different takes on tapering. Believe me, I wish I could go fast like you did. What a blessing to be able to do that. But I dont know if I could do it.

 

Thank you for shedding light on your experience. It makes me look at things in a different way.

 

Heathcliff

 

 

[[He...]]

kgirl

 

What is 4,7,8 breathing? How can I find out more about it?

 

Heathcliff

[[Va...]]

Heathcliff, IMO if you are very symptomatic, your body hasn't adjusted to the decrease. If you give it time, it will return to homeostasis. It just depends on how fast you want to get off. I believe it takes the body just as long to heal if you go fast or slow. Going slow and holding make it less painful by minimizing the sensitization of the CNS. The goal is to feel good on the way down and jump with minimal sxs. Listen to your body and you'll be fine.  --V

[[St...]]

v....can you hold a bit on a crossover too?  I am on the last dose before being done with crossing over and very strong sxs around dosing time that I just cut out....I have replaced with valium but still having the sxs.  I have been cutting every seven days, could I wait a bit longer do you think?  I am crossing around 7 mg of a to 9 mg of v which is plenty of v.  just wondering if you have an opinion on that..thanks! stella