The Long Hold Support Group

[[an...]]

I almost feel like I physically 'exhale' and relax when I come here ! I feel like I don't have to justify !

I hasten to add , not that anyone anywhere else 'makes'me feel like that , I do that all by myself ..

It just feels ok here. Lovely to see my buddies Anne and SB here too xxx

 

Hi BB!!

 

That is exactly how I feel about this thread.  I could not have said it any better. It is wonderful to see you here as well!! 

[[an...]]

This is a great thread!! 

 

Slow is the key!!  I am doing a daily liquid taper, and I do hold when I need to.  My longest hold was over a month, and it helped.  Even as I get to the lower doses I still get slammed with symptoms after cutting for a couple of weeks.  This taper is much different from my first one which was a smooth ride all the way down.  I believe it is because I was not fully stabilized when I started this taper.  I certainly experience more symptoms.  When I do, I hold for as long as it takes until I feel better.

 

Yes, we will all get there given enough time.  I do believe with a slow taper one can taper all the way down without those post withdrawal symptoms.

 

Anne

Thanks for posting your experience Anne!  We're glad you're here. 

 

Thank you Valley!!  I am glad to be here.   

[[fr...]]

  I also love this group.  I am also poly drugged for years.  In pain management and have to taper three drugs.  Dr. don't agree which one to go first.  Neuro told me to up valium and taper hydro. Primary says taper valium first.  Pain management doesn't weigh in, just write the hydro script.  I have had numerous back surgeries, just had latest in January and am recovering.  Trying to taper v at same time and got slammed so bad.  Still fighting but nausea is better and just hope and pray this long hold will help.  I guess I am fighting not only gaba problems but dopamine also.  All three drugs are terrible and my body is actually demanding more pain med but I refuse to go up.  The Dr. who kept me on all these meds is retired now, he is the one who also said nothing wrong with the ativan I was on long term, as did primary.  They just have no idea.  My PM dr. does say they are all poison but some people must take them.  Well, I want off after all these yrs. and I go to that bad place in my mind where it says, you have been on too long, you can't ever get off, you are 63, too old now.  I have taken pain meds for over 25 yrs.  This last time I think it is around 15 yrs. on the norco and soma.  The ativan was only 4 yrs.  Anyway, I am hanging in thete.  this group gives me hope.  ValleyUm, don't know how you survived a cT off 120 mg. of oxy.  I'm on 60 mg. of norco and it is awful  Hope everyone has a good weekend and I have to hang onto the hope I can taper down off these drugs.  I just wish I could feel a little better so I could live some kind of life.  I am a shell of the person I was even 6 months ago.  Bless you all.

[[li...]]

Thank you for everyone who is posting and I pray that everyone will get relief with the information and experience everyone is sharing. I only go on this thread, Nova's 3 month thread and the Daily Microtapering Support Group because that's what I was doing before this hold and what I'll be doing afterward.

 

It is so great to have found a sanctuary--a place where I can share pain/concerns and yet see people who are benefitting from long holds and slower tapers. I fully expected to die when I was reinstated on a benzo (just one dose) in December 2014 and immediate went into withdrawal again, so started to take regularly and started to cut unstable. Many mistakes since then and this group is my first glimmer of hope.

 

I started running when I was 43 (Im 50 now) and haven't been able to run in two years-walking is even too much most days. But I would "turtle run". I didn't care how fast I went, I was just exhilirated to run at all. I bought a tshirt that says "it doesn't matter how fast you go, just go". That has greater meaning to me now in the midst of my turtle taper. I am no longer afraid of losing time and pray I can make the most of it regardless of my limitations until my limitations no longer exist. Then I will challenge Nova to run with me

 

Thanks again to everyone and to Valley for keeping us encouraged. Thanks for a safe place. And for hope.

Love,

Liza

[[be...]]

Liza I felt the same way, I was sure I was dying and after my visit to ER and assurances that I was not having a stroke, I then knew that I had to do

something different. Love your quote "it doestn't matter how fast you go, just go",  so perfect for you and all here that have the same Goal, Recovery and

Wellness.

[[ly...]]

 

 

I am sooo happy that this group is here.  It's about time (no pun!).

 

This group is so supportive and NICE!  I couldn't ask for a better group of buddies to hang out with.

 

I am entering week 6 of this hold and allowing by brain to catch up with a rushed taper in January and February (1mg to .3125) over a six week period.  Sxs are down dramically and all but a couple have completely gone away - proof that we do heal on the way down.  I have had an emergence of some relatively minor pins and needles which tells me a few more weeks is necessary for this old brain to recover.  I had no fear that the mythical tolerance wd was responsible - just a sign that I haven't fully recovered from the cumulative effect of recent cuts.

[[Va...]]

  I also love this group.  I am also poly drugged for years.  In pain management and have to taper three drugs.  Dr. don't agree which one to go first.  Neuro told me to up valium and taper hydro. Primary says taper valium first.  Pain management doesn't weigh in, just write the hydro script.  I have had numerous back surgeries, just had latest in January and am recovering.  Trying to taper v at same time and got slammed so bad.  Still fighting but nausea is better and just hope and pray this long hold will help.  I guess I am fighting not only gaba problems but dopamine also.  All three drugs are terrible and my body is actually demanding more pain med but I refuse to go up.  The Dr. who kept me on all these meds is retired now, he is the one who also said nothing wrong with the ativan I was on long term, as did primary.  They just have no idea.  My PM dr. does say they are all poison but some people must take them.  Well, I want off after all these yrs. and I go to that bad place in my mind where it says, you have been on too long, you can't ever get off, you are 63, too old now.  I have taken pain meds for over 25 yrs.  This last time I think it is around 15 yrs. on the norco and soma.  The ativan was only 4 yrs.  Anyway, I am hanging in thete.  this group gives me hope.  ValleyUm, don't know how you survived a cT off 120 mg. of oxy.  I'm on 60 mg. of norco and it is awful  Hope everyone has a good weekend and I have to hang onto the hope I can taper down off these drugs.  I just wish I could feel a little better so I could live some kind of life.  I am a shell of the person I was event  6 months ago.  Bless you all.

Hi free. You're in the same spot I was in. I either had to ask for a higher dose of both V and oxycodone or just quit. I opted to quit because I figured out it was the meds making me nonfunctional and not my chronic pain condition.  I only did the ct of oxycodone because I'm too impatient. I also thought I would get off the V as quickly as possible. Well, I guess I got taught a lesson in being patient lol. This group is a great place to practice and learn patience.  I'm so thankful to all here! 

[[Va...]]

 

 

I am sooo happy that this group is here.  It's about time (no pun!).

 

This group is so supportive and NICE!  I couldn't ask for a better group of buddies to hang out with.

 

I am entering week 6 of this hold and allowing by brain to catch up with a rushed taper in January and February (1mg to .3125) over a six week period.  Sxs are down dramically and all but a couple have completely gone away - proof that we do heal on the way down.  I have had an emergence of some relatively minor pins and needles which tells me a few more weeks is necessary for this old brain to recover.  I had no fear that the mythical tolerance wd was responsible - just a sign that I haven't fully recovered from the cumulative effect of recent cuts.

Lynn your hold mirrors mine in so many ways. I'm going into week 10 and know I still need to hold. I do well for a few days and then get hit with overwhelming fatigue and minor pain. Still going through the nonlinear wndows and waves pattern of stabilization.  When these start to lessen and or disappear, I'll know I'm finally stable and will hold longer just to make sure.  Thanks for posting! The data in favor of holding is overwhelming. 

[[Va...]]

I love this quote as I work in education:

 

Did you know America ranks the lowest in education but the highest in drug use? It's nice to be number one, but we can fix that. All we need to do is start the war on education. If it's anywhere near as successful as our war on drugs, in no time we'll all be hooked on phonics. – Leighann Lord"

[[li...]]

Valley--would you mind telling us what sxs dropped off in your hold so far?  I'm still wondering what's realistic. Still keep hearing "maybe that's as stable as you can get" from that other group I was in 😡

[[Va...]]

Valley--would you mind telling us what sxs dropped off in your hold so far?  I'm still wondering what's realistic. Still keep hearing "maybe that's as stable as you can get" from that other group I was in 😡

I'm glad you asked.  My DP/DR has dropped off almost to nothing.  Cognitive impairment has dropped off for the most part. I do get some at times, but it doesn't last.  My exercise tolerance is returning. Dizziness is gone.  The living in a hazy alternate reality dream state is gone.  Sleep is good.  Pain is better.  I can actually swallow my pills again lol.  Sweating has greatly subsided (I don't have to change my clothes 3 times a day anymore) as I can keep wearing the same clothes all day.  I hate sitting around and have to make up excuses to get out of the house.  I do still have some mild fatigue, and do get some minor pain.  I feel my brain trying to adjust and have periods of total normality.  I do still get some neuropathy, but only at night and it's gone in the morning.  I can focus, drive, work, and do pretty much anything at this point, but still don't feel this is as good as it gets because I still get subtle improvements every day.

 

The other group you're in is way off IMO.  Don't listen to the naysayers.  If they claim it's as good as you'll get ask them how long they have held and what were their results.  My guess is that most have not held more than a month.  You really are still early in the holding process.  Don't be afraid that you have to do something.  Remember that's a withdrawal symptom and your anxiety telling you that you have to do something to get relief.  The problem with that reasoning is starting to taper while symptomatic will only make you more symptomatic and end up making you bed bound.  Remember the body wants homeostasis and will return to a stable state by making no changes and allowing your body to return to that state.  I still hold fast to the 3 month rule if you are having severe withdrawal symptoms.  It's just getting there that's hard. You will get there!  Hang on.  I am the most impatient person in the world and if I can do it, so can you!

 

Remember these quotes when you feel the anxiety creep in:

 

Symptoms are worsened by anxiety and fear." - Prof Ashton

 

"You can return to normal health." - Prof Ashton

 

"You must keep a positive attitude, be courageous." - Prof Ashton

 

"Allow time for your nervous system to recover. It will."- Prof Ashton

 

"The key to everything is patience. You get the chicken by hatching the egg, not by smashing it."

 

"The secret of patience is doing something else in the meanwhile"

 

"Every path has its puddle"

 

"If you can find a path with no obstacles, it probably doesn't lead anywhere."

 

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength."

 

"Don't be pushed by your problems. Be led by your dreams."

 

"Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain. ' - Frank Herbert

 

"The only courage that matters is the kind that gets you from one moment to the next." Mignon McLaughlin

[[li...]]

Valley--so encouraging--90% of my symptoms are mental/perceptual. Believe me--I'm DONE with that other group. They are groping in the dark.

Thanks!  Have a super day

Liza

[[Va...]]

[[fr...]]

  I wish mine were made up.  This burning is horrendous, plus all other lovely things going on which I might be able to work thru if I could get my mind off my burning feet, tongue and ut area.  OH God help me, I am weak right now.  Hope this s/x lifts as I can't take much more.  I am so sorry for all of you who have the mental ones.  I guess they are all awful.  Hope this holding on will reap some benefit soon.  Sorry to be negative, just having a really bad time right now. 

[[Va...]]

  I wish mine were made up.  This burning is horrendous, plus all other lovely things going on which I might be able to work thru if I could get my mind off my burning feet, tongue and ut area.  OH God help me, I am weak right now.  Hope this s/x lifts as I can't take much more.  I am so sorry for all of you who have the mental ones.  I guess they are all awful.  Hope this holding on will reap some benefit soon.  Sorry to be negative, just having a really bad time right now.

Hi free. Sorry you're having a rough time. I remember the burning feet, tongue, IBS, sweating, neuropathy etc. like it was yesterday (probably because it was yesterday lol). It sucks but it does pass. You'll get there. The sxs seem to gradually fade into the background until most disappear. The bad days just seem to make it all worse. All we can do is wait it out. Time truly does heal all wounds. Stay strong and you will reap the benefits!  If you can do anything even its its small to distract from the sxs, it will help immensely. You will get there, I'm sure you can do this. 

[[Va...]]

http://www.quotes-central.com/wp-content/uploads/2015/08/you-cant-calm-the-storm..jpg

[[li...]]

6 weeks today. I know it's early. Praying for hope and patience. My brain keeps telling me I should be seeing more healing at this point. Fighting those thoughts. Always harder when the day is grey--makes my brain fog/DR/hopelessness/physical depressive feelings/racing intrusives so much worse. And mornings are so difficult. Can anyone relate? 

[[jr...]]

Mornings are the worst. I try to ignore how I feel but it creeps in on occasions. another year till I jump!

[[wa...]]

Mornings are the worst. I try to ignore how I feel but it creeps in on occasions. another year till I jump!

 

Me, too.  And weekends without sleep and feeling like hell -- I have to supervise my son who is completely indifferent and now deceitful, too.  I just give up trying to improve the relationship.  I'm too ill. WBB

[[jr...]]

I was taught at CBT that you have to take care of you first and then others

[[ga...]]

Hi. Is anybody on here taking Seroquel for sleep? I've been taking it off and on. I thought it would be a short-term thing and this taper would go faster, but here I am in long hold. My doctor wants me to take it every night. I take 25mg 2 nights on and one night off (trying not to get hooked) but I think I am hooked on it and yo-yoing all over the place. I am unsure if taking it every night for long term is OK or if I will habituate to it and it will stop working. Wondering what other people's experiences are.

 

By the way, I already tried everything under the sun, natural and prescription and nothing works except a HUGE dose of gabapentin or a small dose of Seroquel. My sleep issues are trauma-related and I have not found a trauma therapist who will work with me when I am unstable, and most won't touch someone taking a benzo, at least around here in the middle of nowhere. Without meds I get almost zero sleep and was so bad I was afraid I was going to be locked up from my brain coming apart from lack of sleep. I couldn't even walk or chew I was so tired. So I broke down and took a drug. Now I am trying to get out of this drug nightmare but can't.

 

Sorry if I already asked or explained this. Very poor sleep last night.

 

Gard

[[an...]]

Hi Gardner,

 

I am so sorry you are going through this.  I have no experience with these drugs, but I am sure someone will chime in soon.

 

I hope that you are able to find some answers soon.

 

((HUGS))  Anne xoxox

[[ga...]]

Thank you, Anne. 

[[Va...]]

Hi. Is anybody on here taking Seroquel for sleep? I've been taking it off and on. I thought it would be a short-term thing and this taper would go faster, but here I am in long hold. My doctor wants me to take it every night. I take 25mg 2 nights on and one night off (trying not to get hooked) but I think I am hooked on it and yo-yoing all over the place. I am unsure if taking it every night for long term is OK or if I will habituate to it and it will stop working. Wondering what other people's experiences are.

 

By the way, I already tried everything under the sun, natural and prescription and nothing works except a HUGE dose of gabapentin or a small dose of Seroquel. My sleep issues are trauma-related and I have not found a trauma therapist who will work with me when I am unstable, and most won't touch someone taking a benzo, at least around here in the middle of nowhere. Without meds I get almost zero sleep and was so bad I was afraid I was going to be locked up from my brain coming apart from lack of sleep. I couldn't even walk or chew I was so tired. So I broke down and took a drug. Now I am trying to get out of this drug nightmare but can't.

 

Sorry if I already asked or explained this. Very poor sleep last night.

 

Gard

I wonder if trazadone would help. If you took small doses and not every night. It is an AD, but can be used for sleep occasionally. I'm sorry you're struggling. Hang in there!

[[Va...]]

6 weeks today. I know it's early. Praying for hope and patience. My brain keeps telling me I should be seeing more healing at this point. Fighting those thoughts. Always harder when the day is grey--makes my brain fog/DR/hopelessness/physical depressive feelings/racing intrusives so much worse. And mornings are so difficult. Can anyone relate?

Fight those thoughts. I'm at 10 weeks and mornings are just a slight inconvenience.  I feel improvement every day although there are periods during the day that i still feel slight problems, I've seen a huuuuge improvement in overall sxs.  I'm having 100% windows at times. It feels so great.  You will make it!  I'm loving this holding thing now!