The Long Hold Support Group

[[Ma...]]

Hey guys, rough day.  Love you all, Mary 💜💜💜💜💜

[[Tr...]]

Well hello everyone, I just got my flu shot ouch! Wow, what a jab in the muscle.

I'm recording the Lisa Ling thing bc it's on 10:00 here and I'll be asleep by then so I'll watch it in the morning. I highly doubt it's worth staying up for however I am curious to see it.

I want to give a shout out to Stut and Bill thinking of you both! Stut hope you're feeling better thinking of you.

Bill I hope you enjoyed your time away. Hope you are doing well with your taper.

Well ladies it was church today and now it's football. Watching our team, the Giants, get beat 🤬

TTTTTTTT ❤️

[[Tr...]]

Hey guys, rough day.  Love you all, Mary 💜💜💜💜💜

What's going on MMMMMM? Is it the muscles and your eye? 😟

[[De...]]

Hey marvelous m agnificient magical magnamious mmmm,

Sorry another rough day.  Still back pain?

Hi lots of t's

Glad you got out today and seem in a good mood!

[[Fi...]]

Hey guys, rough day.  Love you all, Mary 💜💜💜💜💜

 

Hi Mary,

 

You will get through this Mary and I'm so sorry its rough today.

Mine is semi rough too.  I have to keep reminding myself that I'm doing nothing wrong, I just have no gaba at my disposal. 

 

 

 

 

[[va...]]

Suzanne, both nausea and headaches are very commonly reported withdrawal symptoms. However if they persist, please you could visit a doctor to rule out anything else. I hope you get better soon. Be patient Suzy. Holding isn't a quick fix but it seems to help most people.

 

Trishy you mentioned you felt better after a long hold. What went wrong after that? You started tapering again and symptoms were too severe? I was just remembering you told us that you felt fine after holding for awhile. You sound much better than a month ago and I'm really glad.

 

Mary you seem to be having a rough day. I hope you start feeling better soon, now that you're holding for a while.

 

Everyone else, I hope we all find the healing that we need.

 

Today I was remembering Lilgma. I miss her and I hope she's OK.

 

STUTT, don't write if you're with the flu. Just take care and rest.

 

 

[[De...]]

Thanks v,

I have been thinking maybe i did something wrong. I feel depressed and i usually dont feel so dark and gloomy. Now nre sx, read that as you go lower, the depression lifts because Benzos are depressants. I feel like i went fron high anxiety to depression. This is rediculous. Is your dep lifting? I havent walked as much maybe that is why. I dont think so because sll i do is sleep.  Ahhhh

[[De...]]

Ive been thinkimg about lilgma too. She is so nice. I hope she is ok. 

[[Tr...]]

Suzanne, both nausea and headaches are very commonly reported withdrawal symptoms. However if they persist, please you could visit a doctor to rule out anything else. I hope you get better soon. Be patient Suzy. Holding isn't a quick fix but it seems to help most people.

 

Trishy you mentioned you felt better after a long hold. What went wrong after that? You started tapering again and symptoms were too severe? I was just remembering you told us that you felt fine after holding for awhile. You sound much better than a month ago and I'm really glad.

 

Mary you seem to be having a rough day. I hope you start feeling better soon, now that you're holding for a while.

 

Everyone else, I hope we all find the healing that we need.

 

Today I was remembering Lilgma. I miss her and I hope she's OK.

 

STUTT, don't write if you're with the flu. Just take care and rest.

Hey V, Last summer I was forced to taper large amounts and I was never so sick in all my life. The list of sxs are numerous. I needed to find another Dr to take me on bc my poor body and brain just couldn't do it. So I got another Dr thanks to my daughter in law who took me as good patient and let me hold. He let me hold for 6 months where I got better after about 8 weeks but felt awesome after about 12 weeks. I began my taper again at the end of December last year. I did fine for the first two cuts I believe then it started to get more difficult. I still continued, having to hold longer at some points bc of colds and viruses, but I pushed on sometimes cutting a little less then two weeks apart. I believe my cuts caught up to me and put me into a mess. The POTS like symtoms came on very strong. I had air hunger, couldn't walk, couldn't stand for long without becoming out of breath, uncomfortable chest discomfort, weird heart arrythmia..etc.. so then I updosed a little which did me no good and then held. It's actually 3 months today that I updosed and held. I feel really good , mentally I feel like myself. Physically my POTS like sxs are all but gone. I can walk all day without any breathlessness, the chest discomfort is still there but barely. I'm even thinking I don't need to see a specialist for POTS anymore. I'm about 98 percent better where that's concerned. So both my long holds have done me wonders. I will make one more cut this year on Nov 1 then not until after Christmas. I hope that made sense. So long holds have helped me tremendously in my case.

TT

[[va...]]

Thanks v,

I have been thinking maybe i did something wrong. I feel depressed and i usually dont feel so dark and gloomy. Now nre sx, read that as you go lower, the depression lifts because Benzos are depressants. I feel like i went fron high anxiety to depression. This is rediculous. Is your dep lifting? I havent walked as much maybe that is why. I dont think so because sll i do is sleep.  Ahhhh

 

Suzanne, when I crashed, my terror was so bad that there was no space for depression. Now I have days off more anxiety and days of more depression. Two weeks ago I had a day with depression so bad that for the first time since July I had thoughts of please lord take me with you again. I'm down to 2.5 of Valium. Depression doesn't lift if you're in withdrawal like we are, because it's a withdrawal symptom. I hope they all become milder if we hold. I really do. I AM better so at least that's something. You'll get better too. Please have faith in you. It's all withdrawal. It will pass.

[[va...]]

Trishy I'm so glad the hold is working for you. You really sound like yourself again. The cuts you did that caught up with each other were DLMT or cut and hold? I'm not feeling strong enough to cut. I can't even get a one minute nap without a brain jolt waking me up, so I think that's a clear sign that I'm not ready to taper. At night I do sleep but that's thanks to trazodone.

[[De...]]

Thanks so much v,

I have really been pAnic stricken for a long time. So that mskes sense im calmer now. No idea why.  So now hit with depression. I was to busy freakin out. I had had a few days like you mentioned also. It 8s so scary.  This whole thing is so painful.  I hope it lifrs soon. I was thinking maybe i cut to much and should u0dose but im not in agony. So i need a long hold like you did. I am so glad you are starting to have some better days. Love Suzy 

[[va...]]

Trish I see you're cut and hold like me. Yes, I think I'll wait two months between cuts next time.

[[De...]]

Oh i jump.up when i drift off to sleep too. My heart starts pounding then nauseous and i jump up. This is so much fun. 

[[va...]]

Thanks so much v,

I have really been pAnic stricken for a long time. So that mskes sense im calmer now. No idea why.  So now hit with depression. I was to busy freakin out. I had had a few days like you mentioned also. It 8s so scary.  This whole thing is so painful.  I hope it lifrs soon. I was thinking maybe i cut to much and should u0dose but im not in agony. So i need a long hold like you did. I am so glad you are starting to have some better days. Love Suzy 

 

Thank you Suzy. Yes for me it was terror 24/7 and then I started getting some days terror but but not as bad, some days AWFUL depression, and some windows. Always remember there will be more windows and hold on to dear life and stick to the threads that lift you up. I'm going to watch big brother now. Very good distraction 

[[Tr...]]

Trish I see you're cut and hold like me. Yes, I think I'll wait two months between cuts next time.

I think I'm going to try every 30 days in the New year. We'll see .. if I start to struggle I'll push it to every two months. If I wasn't sick with a cold or virus I'd move along every two weeks or a few days less and that's how I got into trouble I'm certain. That was too fast for me and the lag time threw me off. So then I got the smack down in the worst way I could have ever imagined. Not being able to breath was no fun!

[[De...]]

Thanks v,

A massive roller coaster ride! 🤤 We will.get there. I will hang on and for some stability and you too. Hopefully we have a better dsy tomorrow. But still trying to find moments of happiness in the bad days too. If that makes sense. Just dont want to think i will have no happiness till who knows when. Then.i get really down. One day at a time all we have is today. Enjoy big brother. Tslk tomorrow. Gave a peaceful night! Love Suzy

[[AZ...]]

Suzanne, both nausea and headaches are very commonly reported withdrawal symptoms. However if they persist, please you could visit a doctor to rule out anything else. I hope you get better soon. Be patient Suzy. Holding isn't a quick fix but it seems to help most people.

 

Trishy you mentioned you felt better after a long hold. What went wrong after that? You started tapering again and symptoms were too severe? I was just remembering you told us that you felt fine after holding for awhile. You sound much better than a month ago and I'm really glad.

 

Mary you seem to be having a rough day. I hope you start feeling better soon, now that you're holding for a while.

 

Everyone else, I hope we all find the healing that we need.

 

Today I was remembering Lilgma. I miss her and I hope she's OK.

 

STUTT, don't write if you're with the flu. Just take care and rest.

Hey V, Last summer I was forced to taper large amounts and I was never so sick in all my life. The list of sxs are numerous. I needed to find another Dr to take me on bc my poor body and brain just couldn't do it. So I got another Dr thanks to my daughter in law who took me as good patient and let me hold. He let me hold for 6 months where I got better after about 8 weeks but felt awesome after about 12 weeks. I began my taper again at the end of December last year. I did fine for the first two cuts I believe then it started to get more difficult. I still continued, having to hold longer at some points bc of colds and viruses, but I pushed on sometimes cutting a little less then two weeks apart. I believe my cuts caught up to me and put me into a mess. The POTS like symtoms came on very strong. I had air hunger, couldn't walk, couldn't stand for long without becoming out of breath, uncomfortable chest discomfort, weird heart arrythmia..etc.. so then I updosed a little which did me no good and then held. It's actually 3 months today that I updosed and held. I feel really good , mentally I feel like myself. Physically my POTS like sxs are all but gone. I can walk all day without any breathlessness, the chest discomfort is still there but barely. I'm even thinking I don't need to see a specialist for POTS anymore. I'm about 98 percent better where that's concerned. So both my long holds have done me wonders. I will make one more cut this year on Nov 1 then not until after Christmas. I hope that made sense. So long holds have helped me tremendously in my case.

TT

 

Hi Trishy

I’m so glad you’re feeling so much better.  You seem to have stabilized pretty quickly, that’s a really good thing.  I remember posting to you back in July and August and you were certain you had POTS for the rest of your life!  I felt the same way with my dysautonomia, but when I stabilized it went away, I kinda thought yours would too, and it looks like it has!

 

If you think you would like to try liquid DLMT when it’s time to taper, let me know and I can help.  When you cut and hold the symptoms can come back each time you cut.  With liquid you can go so slowly symptoms are minimal.  I really recommend it.

 

Take care Trishy!

[[va...]]

Thanks v,

A massive roller coaster ride! 🤤 We will.get there. I will hang on and for some stability and you too. Hopefully we have a better dsy tomorrow. But still trying to find moments of happiness in the bad days too. If that makes sense. Just dont want to think i will have no happiness till who knows when. Then.i get really down. One day at a time all we have is today. Enjoy big brother. Tslk tomorrow. Gave a peaceful night! Love Suzy

 

Exactly Suzy, I think the same about trying to find some enjoyment through this process. We never know what will happen in life and we can't put off living until we're off the benzo and healed. I also think, like you do, that all we have for certain is the present moment and we need to make the most of it. As soon as we have a little window we have to enjoy it fully.

[[St...]]

Good morning LHSG hoping everyone has a better day.

Morning Lady Mary, Intend, Trish,Vali,Suzy, Final Bill,Free, Gilly Esperanza thank you all for your support.Still under the weather this end.Virus plus withdrawal is the perfect storm.Awe well it will pass hopefully sooner rather than later.l am resting as much as possible.

I am always sad to see the suffering however l am hopeful it will ease of a little given enough time.Know this will end for all of us one day.

I am going to be quiet for a while so please don't worry about me l will be grand.Lady Mary keep your chin up honey.Don't let this beat you.

  Thinking of everyone here and willing you all on.

Love and hugs Stut.X

[[Tr...]]

Suzanne, both nausea and headaches are very commonly reported withdrawal symptoms. However if they persist, please you could visit a doctor to rule out anything else. I hope you get better soon. Be patient Suzy. Holding isn't a quick fix but it seems to help most people.

 

Trishy you mentioned you felt better after a long hold. What went wrong after that? You started tapering again and symptoms were too severe? I was just remembering you told us that you felt fine after holding for awhile. You sound much better than a month ago and I'm really glad.

 

Mary you seem to be having a rough day. I hope you start feeling better soon, now that you're holding for a while.

 

Everyone else, I hope we all find the healing that we need.

 

Today I was remembering Lilgma. I miss her and I hope she's OK.

 

STUTT, don't write if you're with the flu. Just take care and rest.

Hey V, Last summer I was forced to taper large amounts and I was never so sick in all my life. The list of sxs are numerous. I needed to find another Dr to take me on bc my poor body and brain just couldn't do it. So I got another Dr thanks to my daughter in law who took me as good patient and let me hold. He let me hold for 6 months where I got better after about 8 weeks but felt awesome after about 12 weeks. I began my taper again at the end of December last year. I did fine for the first two cuts I believe then it started to get more difficult. I still continued, having to hold longer at some points bc of colds and viruses, but I pushed on sometimes cutting a little less then two weeks apart. I believe my cuts caught up to me and put me into a mess. The POTS like symtoms came on very strong. I had air hunger, couldn't walk, couldn't stand for long without becoming out of breath, uncomfortable chest discomfort, weird heart arrythmia..etc.. so then I updosed a little which did me no good and then held. It's actually 3 months today that I updosed and held. I feel really good , mentally I feel like myself. Physically my POTS like sxs are all but gone. I can walk all day without any breathlessness, the chest discomfort is still there but barely. I'm even thinking I don't need to see a specialist for POTS anymore. I'm about 98 percent better where that's concerned. So both my long holds have done me wonders. I will make one more cut this year on Nov 1 then not until after Christmas. I hope that made sense. So long holds have helped me tremendously in my case.

TT

 

Hi Trishy

I’m so glad you’re feeling so much better.  You seem to have stabilized pretty quickly, that’s a really good thing.  I remember posting to you back in July and August and you were certain you had POTS for the rest of your life!  I felt the same way with my dysautonomia, but when I stabilized it went away, I kinda thought yours would too, and it looks like it has!

 

If you think you would like to try liquid DLMT when it’s time to taper, let me know and I can help.  When you cut and hold the symptoms can come back each time you cut.  With liquid you can go so slowly symptoms are minimal.  I really recommend it.

 

Take care Trishy!

Hi Bill! It's so good to hear from you. How was your time away? I hope you're feeling better.

So yes I am feeling better with this hold. It took 3 months to get to where I am. I still have chest discomfort but it's mostly associated with change in temperature like a hot bath will make it feel weird and uncomfortable. Still get hot flashes but those are less as well. Mostly the breathlessness and air hunger are gone! 😀 I will probably cancel my appt with the POTS specialist this month bc I now believe it was all taper related.

I honestly don't know how I'm going to move forward with this taper Bill but I know I must. I'm going to do cut and hold until I get to 1 mg which I hope to be at by the end of December. I will be making a cut on Nov 1 then holding until after Christmas. I do know I will be putting more time then I did before in between cuts.

Thank you for being so supportive Bill, you know I appreciate your calm voice around here it has helped me more than once! 🙂

Be well,

Trish

[[Tr...]]

Stut feel better my twin. I'm very familiar with wd and viruses. I was sick so many times last year while working with little kids. I really feel for you. Drink lots of fluids and rest as much as you can, hopefully you'll be feeling better very soon.

Love you,

LST❤️

[[Tr...]]

Hey everyone what's your thoughts on the Lisa Ling special? I cried in the very beginning. Two things I was hoping for was talked about. How difficult it is to get off these drugs and the lack of knowledge the medical professionals have on This class of drug. I also felt validated however some things talked about like reading the pamphlet of warnings that come with the medication.. Well I'm someone who has anxiety like most of us here and I personally avoid reading those pamphlets bc it increases my anxiety. I've actually been told NOT to read those by my Dr's!!! Unbelievable.. Also Lisa Ling should have been able to say definitively that wd from K was causing his sxs. That infuriated me. I liked that BB was on there and that there are no Drs here to help us just eachother to help us. I'm glad addiction was not mentioned and it dependence was. A woman from BB was on there and she received help with dlmt by an Australian man who called her on the phone!! CAN'T? COULD THAT HAVE BEEN YOU? Sooooo you really do go on missions SPY 🕵️‍♂️😂😂

Over all I was not disappointed but would have liked to have seen more on the suffering and it being crucial for an extremely slow taper. It was mentioned but not stressed like I wanted it to be.

I'm going to re watch it with Rich tonight. I recorded it and watched it this morning. I'd like my kids to watch it too at least it would give them a better understanding of what I've gone through and continue to go through.

TTTTT ❤️

[[De...]]

Thanks v,

A massive roller coaster ride! 🤤 We will.get there. I will hang on and for some stability and you too. Hopefully we have a better dsy tomorrow. But still trying to find moments of happiness in the bad days too. If that makes sense. Just dont want to think i will have no happiness till who knows when. Then.i get really down. One day at a time all we have is today. Enjoy big brother. Tslk tomorrow. Gave a peaceful night! Love Suzy

 

Exactly Suzy, I think the same about trying to find some enjoyment through this process. We never know what will happen in life and we can't put off living until we're off the benzo and healed. I also think, like you do, that all we have for certain is the present moment and we need to make the most of it. As soon as we have a little window we have to enjoy it fully.

[[De...]]

He val,

 

Me too it helps me cope better. You said it perfect. You are so well spoken. I hope you are well today. You sound very good lately. I hope the dep isnt too bad. I am feeling it but not half as bad. I think i will take a walk. Wish i was working. Still so sick. I have too much time on my hands and that can make your mind do crazy things. Lol. Maybe i can i dont know.