The Long Hold Support Group

[[Ma...]]

Goodnight everyone, just peeking in to see how everyone is holding on. I'm starting to handle the effects of 40mg so may do a cut in 2 weeks of 2mg.

 

Btw can one have a window while tapering?

 

 

I had a window in Feb 2019 for 3 weeks and another one, much shorter in April.  None since then though  . But I have had periods where I feel better, not a window but certainly better than many times over the course of my taper.  I know several people who have had windows. So I would definitely say "yes", it is possible if you are trying to go go slow and taper the right amount.  Good luck!  Mary💜

[[Ma...]]

Happy new year everyone!

 

It’s been quite a while again since I’ve been on.  I hope everyone had good holidays.

 

Trishy it sounds like your new furry friends are keeping you pretty busy.  Glad you’re doing well. 

 

Uphold, I hear that you are in the thick of withdrawal symptoms now.  A year ago I was in benzo hell.  Barely functional and very sick.  I started holding my dose constant about this time a year ago.  I held for 5 months before I ever so gradually felt better enough to start a slow taper last June.  Things have improved dramatically now compared with where I was.  But the improvement is extremely slow.  Improvement was barely perceptible just like they say, you look back a month or two and you can see definite improvement but a few days is not perceptible.

 

I guess my message is the time required for improvement can be extremely slow and requires a ton of patience, but it does get better.  You will too.  That’s why a few months for a hold is not a long time.  You will see improvement over a long time when holding.

 

I’m feeling pretty good now, but still have a long way to go to get to zero

 

Hang in there everyone, keep plugging away!

Bill

 

Hey Bill!  So good to see a post from you and glad to hear you are still improving.  Hope you had Happy Holidays and New Year , LY Mary 💜💜

[[De...]]

Hi Mmm l,

How are you feeling? I am so so. I dont know i feel off since my thyroid med was upped. Strabbing  pains and feet tingling worse.

Eberythintnis triggering and feeling hopeless m I jope 8 stabilize l. I have held almost done 4 months.  I feel  so bad thatnthis is going to take the rest of my life. I cant even increase a med without getting worse.  I dont get it. Nothing makes sense.  8 ajlm not sure even when to taper again. Maybe the drug 8s tox8c to me. Sorry i am not myself. Love dd ❤🖤❤💚

[[Ma...]]

Hi Mmm l,

How are you feeling? I am so so. I dont know i feel off since my thyroid med was upped. Strabbing  pains and feet tingling worse.

Eberythintnis triggering and feeling hopeless m I jope 8 stabilize l. I have held almost done 4 months.  I feel  so bad thatnthis is going to take the rest of my life. I cant even increase a med without getting worse.  I dont get it. Nothing makes sense.  8 ajlm not sure even when to taper again. Maybe the drug 8s tox8c to me. Sorry i am not myself. Love dd ❤🖤❤💚

 

DD, never apologize to me.  This is so hard.  It takes a long time to stabilize and thyroid med can rev your system, that might be a big part of problem.  Your body will have to adjust.  It doesn't make sense, there are just so many things trying to adjust and heal.  All these things in our brain and central nervous system, it's a slow process.  Just when I thought I had it all figured out last July, I hit a wall .  I was so shocked, I was being careful, watching my % and taper time, feeling good, then bam.  I still don't know what caused it, a few times since then, I thought I was stabilizing, but nope.

Just hold tight sweet D.  It's the hardest thing you will deal with in your life.  I am here for you always.

So many people in this group think the world of you.  I know you would like to feel better and you will, I hope it's soon.  Love you much, Kathy 💜💜💜

 

[[va...]]

Hi everyone.

 

Suzy, I'm feeling and thinking the same. Holding for five months now and very little improvement after September. Still, we know that cutting or doing anything is going to make things even worse. I'm reading more posts of people who've just decided to stay on the drug for now, because that helps me get rid of the urgency at least for a few hours. My goal is to come off, but my brain and body tell me it's definitely not going to be any time soon. At least we have a place to share without everyone warning us about "tolerance wd". That's a relief.

[[De...]]

Thanks Kathy,

That is how I feel. Your going along thinking ok i must brle stanilizing. Then you think what did i do? Did i over do it?  I mean we cant do.to much and the little we do is too much.  3ating the wrong thing, did i use a bad soap or cream. Omg. It makes me neurotic.  I am sorry that happened to you. We are so careful. I guess it the process. I mean if we need to adjust a med, here comes another setback . I swear it makes me angry. I cannot believe a pill can cause so much pain. I dont think you did anything wrong. You are meticulous and do you research l. You were doing.your yoga and treadmill.  I guess the body.just has to go back into the healing process. I think that is what a wave is. We must be healing like crazy. Good when we are done maybe it eill be our turn to feel good. Dam benzos. Thanks you.made me feel better. Ly Suzy 😘❤❣

[[Ma...]]

Thanks Kathy,

That is how I feel. Your going along thinking ok i must brle stanilizing. Then you think what did i do? Did i over do it?  I mean we cant do.to much and the little we do is too much.  3ating the wrong thing, did i use a bad soap or cream. Omg. It makes me neurotic.  I am sorry that happened to you. We are so careful. I guess it the process. I mean if we need to adjust a med, here comes another setback . I swear it makes me angry. I cannot believe a pill can cause so much pain. I dont think you did anything wrong. You are meticulous and do you research l. You were doing.your yoga and treadmill.  I guess the body.just has to go back into the healing process. I think that is what a wave is. We must be healing like crazy. Good when we are done maybe it eill be our turn to feel good. Dam benzos. Thanks you.made me feel better. Ly Suzy 😘❤❣

 

I second " damn benzo's "...

[[De...]]

Hi Janice,

I get that urgency too. I staryed thinling things like maybe i am getting worse or more sx from holding so long. I guess that is not true. I remember you were having good days here and there. I still font see how we could go into tolerance wd holding. I dont geel a thing when i take the benzo.  It just gives our body some gaba so we can scrape by. So taking that away when your in rough shape would make it worse. We will be ok. It is just going to suck for a while. Nothing about this makes sense. I guess we listen to our body snf when we are ready we be very careful going slow. But all we have to do is worry about making it through today. Woeeying isnt going to help us. It will only make up feel worse. Hope i am makimg sense. My brain if yoadt from all this. Ly Suzy

[[De...]]

Haha mm,

What a trip this is!! 

[[Tr...]]

Hello ladies,

 

Sorry to see some of you are having a bad day or even a bad time.

The one word that sticks out in all these posts is the word " crazy". How right you all are. There is no sense to be found in this process.

Doing exactly the same you did / ate/ drank etcetera as yesterday and the day before,  yet still  "Bam", a bad day hits you. Why? No one knows. I like the way Suzy said it : " I 'm in a lot of pain, I think we must be healing like crazy ". That's what I tell myself when in pain or having weird head pressure:  look how much I 'm healing!  Love a bit of sarcasm.

 

Again we are supporting the ones in need; it  could be you or me tomorrow needing support or giving it.

 

Hope we all feel better soon. Stay strong!

[[Ma...]]

Hello ladies,

 

Sorry to see some of you are having a bad day or even a bad time.

The one word that sticks out in all these posts is the word " crazy". How right you all are. There is no sense to be found in this process.

Doing exactly the same you did / ate/ drank etcetera as yesterday and the day before,  yet still  "Bam", a bad day hits you. Why? No one knows. I like the way Suzy said it : " I 'm in a lot of pain, I think we must be healing like crazy ". That's what I tell myself when in pain or having weird head pressure:  look how much I 'm healing!  Love a bit of sarcasm.

 

Again we are supporting the ones in need; it  could be you or me tomorrow needing support or giving it.

 

Hope we all feel better soon. Stay strong!

 

That's very good on the support issue Trouch, it can be any of us at any time that needs support.  When I am able to support people, it makes me feel better, at least like I am accomplishing something while I sit here.  I have learned so much by reaching out to others.  bb means so much to me.  💜💜

[[Tr...]]

[[De...]]

Thanks Troch! 

[[AZ...]]

Happy new year everyone!

 

It’s been quite a while again since I’ve been on.  I hope everyone had good holidays.

 

Trishy it sounds like your new furry friends are keeping you pretty busy.  Glad you’re doing well. 

 

Uphold, I hear that you are in the thick of withdrawal symptoms now.  A year ago I was in benzo hell.  Barely functional and very sick.  I started holding my dose constant about this time a year ago.  I held for 5 months before I ever so gradually felt better enough to start a slow taper last June.  Things have improved dramatically now compared with where I was.  But the improvement is extremely slow.  Improvement was barely perceptible just like they say, you look back a month or two and you can see definite improvement but a few days is not perceptible.

 

I guess my message is the time required for improvement can be extremely slow and requires a ton of patience, but it does get better.  You will too.  That’s why a few months for a hold is not a long time.  You will see improvement over a long time when holding.

 

I’m feeling pretty good now, but still have a long way to go to get to zero

 

Hang in there everyone, keep plugging away!

Bill

Happy New year Bill!! I was just thinking of you! I was going to post something to you today! So glad you checked in! I hope you're doing well, my pots like sxs are back but ever so mild. I think I'll hold until they go.. hope they go 🙏😳.. I wonder Bill if the pots like sxs will ever completely be gone or if I have to wait to be completely off to heal fully?? How about you, do you have the pots like sxs still? I'd love to know if you do. Give me a shout out when you can.

Be well my friend!

Trish

 

Hi Trishy

So sorry the pots is back, but they are very mild which is good!  Whenever I do have a ramp up of symptoms, I do get very mild pots like symptoms, I feel weak, minor chest tightness, fatigue, etc.  but it’s gotten to be very mild and not very often now.  I see you are down to 1 mg, which is where you got pots last summer.  You maybe need to take it very slowly at this dose, it might be a sensitive level for you.  Once you get past it it might be less sensitive.  Looks like you just cut so I would hold now till it clears up.

 

I think you’re doing great Trishy!  Keep on going!

[[Tr...]]

Hello,

 

Had a bad night: Woke up really early because of that deep, mean pain, that's been making my nights so bad lately.  No way I could get back to sleep. No position was comfortable.  Fear of cancer kicked in again. What an awful way to start the day. Now I'm one of the people needing support. Been up since silly o' clock. And still it's only 7.30 am. Hope the day is not going to be a terror one. :'(

[[Ol...]]

Aw, sending love to the suffering buddies out there.

[[Tr...]]

Thanks, OliveKittty,

 

Hope you have a good sleep. May it be deep, long and refreshing.  :sleepy:

 

T.S.

[[va...]]

Hi Troschetter. I think OK is in US so she's probably gone to bed. I'm sorry you're having this awful pain interfere with your sleep. Is it the fybromialgia or the bwd pain? You are most likely not going to have cancer. And we will all day one day, and when we finally die, all our troubles will be over, including bwd, so it's not going to happen now but it eventually happens to everyone and yes it's sad that we will leave but the suffering will leave too. In the meantime we need to make the most of the life we've got, withdrawal and all. I'm so sad for your physical pain and that it doesn't let you sleep, because that really makes it harder to be positive about anything.

[[Tr...]]

Valiumnomore,

 

[[De...]]

Hi Troch,

Sorry you are feeling so much pain. Try not to catastrophize. It seems like you always wake up with the pain but as the day goes on yoy get a bit better. I know when i get tests done i think the worst and it turns out fine. Im sure you dont have cancer. We get all kinds of terrible sx bwd. Our minds go crazy. Let us kbow gow you are doing. Ly Suzy

[[Tr...]]

Hi Suzy,

 

Thanks for your support!  I really need that at the moment. You're right: I do catastrophyze. Always fearing the worst.

I feel so miserable, lots of pain, anxiety is back. This week I had a couple of better days,  but bad ones as well. This morning things were awful. I stayed in bed for most of the time, was so tired, because of all that pain and lack of sleep. Now I'm feeling a little better after I had lunch, and took an Ibuprofen. Am going to watch TV to distract me from this misery. Not going for a walk today, think I may have  overdone it this week.

Benzos suck!

Hope your sleep was OK.

[[Ma...]]

Trouch, sorry you had such a bad night.  I have a lot of pain too usually but right now, (knock wood), it's not so bad.  Hope yours eases very soon .  Yes!  Benzo's suck !!  Thinking of you, love Mary 💜💜

[[Ma...]]

DD!  DD!    My enso has an order # and will be shipping soon.  I am so excited  .  LY girlfriend,

MM  :smitten:

[[De...]]

Omg!!! It is a true miracle!!!!!  I cannot believe it. I am so excited. Hopefully you eill get it tyid week!!! yahoooo 😂😂❤❤❤

[[Ma...]]

Omg!!! It is a true miracle!!!!!  I cannot believe it. I am so excited. Hopefully you eill get it tyid week!!! yahoooo 😂😂❤❤❤

 

:clap: