The Long Hold Support Group

[[Ma...]]

Hey Troch, sorry you are having a depressing day. I turned on some xmas music anf it cheered me up. Lol. I walked and streyched and did some cleaning. Now i am on yhe heating pad with a bag of frozen veg on ny hip. I will try snything!! Lol.

 

By the way none of us are ruined. We are just as goid as other ppl that arent going through this and one day we will have our lives bvack! I always think I am ruined and less than but it is not true!!

 

No , it's not true DD.  We think you are wonderful.  I think this time of year, we are all having a lot of symptoms that are the depressing type just because we want to feel good and be part of the festivities.  All the Christmas commercials, people shopping and eating out.  Makes it hard when you feel like crap.

Vali, you have got a great attitude and I can tell you, you are doing so well with all your responsibilities.  You are a strong woman.

Troch, you fit in well here, we are lucky you joined us.

FH, you are working your way through those depressive symptoms, one day, they will be gone.  I know it.

GP, we just love you, and want you to take care of yourself. 

 

Love everyone on Long Hold, hope everyone can check in over the holidays

English, you are always on my mind, pets to Tilly.

Esperanza, my hillbilly cousin, put that damn shine down

Stut, if you can remember all the names, you will get a job quickly when you are ready.

Bill, how are you, still hoping you are feeling better.  Several of my friends are still trying to get their strength back from the flu,  nasty bug. 

Trishy, yes we know, and we're jealous......

 

Mary  :smitten:      

[[Tr...]]

Hey guys,

I'm sorry so many of you are having it really rough. Trust me I relate to each and every one of you. I've been down and I've been punched, kicked and tortured from benzo wd. It is by far the most challenging thing I have ever faced. I am only living it up as best as I can bc I don't know when my next "beating" will come. The long timers around here know this very well about me. I've had panic and anxiety that has been off the charts! Sweats, dizziness, brain fog, headaches, inner tremors and vibrations, feelings of being electrocuted, dp and dr , mood swings, insomnia, breathlessness, chest pressure, fast heart rate, low heart rate, high BP, low BP, depression, that made me think about wanting to kill myself and I'm sure there's more but you all get the picture. I just want you all to know that even though I'm feeling good right now I am still in those trenches with you! This is absolute hell to go through. So listen my friend's when those windows come and they will you better grab whatever life you can get your hands on! Get out of the house and do things you love.. And if you can't remember what you used to love before this god forsaken nightmare find new things that interest you. Life is too short so when I feel good I'm out there doing as much as I possibly can bc I know that benzo devil will be back at my heels again. I'm already trying to push thoughts out of my head about another 12 months of tapering ahead of me. I was just thinking this morning that this is my second Christmas here at the LHSG and it's not going to be my last! I'm sure I'll have at least 2 more here. So my friend's be patient while waiting for those windows to open up wide and when they do take in big deep breaths and live, live, live! Life is beautiful, life is a gift and as much as we hate suffering , especially me, it's also part of life.

 

Sending up those prayers guys 🙏

 

Love to all of you ♥️

 

TT wishing on all those 🌠's for sweet, beautiful Windows for all of you. That's my Christmas wish 🌠🙏

[[Gu...]]

So happy for you T.  It's great to see you and Kitty loving life and I really enjoy hearing about your travels.  Gives me something to look forward to.

 

 

 

Has anybody tread the thread about DNRS under the Alternative Therapies section.  It sounds really promising.  I read all 8 pages.

[[ro...]]

Hey Buddies,

 

Haven’t been here for the past, I think 7 years? Without getting into the details, since then, I was able to regain my life unfortunately by stabilizing on a higher than original dose due to as forced rapid taper by a PCP who didn’t know what they were doing. (I know.)

 

Past 6 years, was able to build a career, build myself back up, and be totally fine on an admittedly high dose — 5mg clon. I’ve also met the love of my life in the past year, and never been happier.

 

Over the past year, with a new and HUGELY supportive medical team, made another attempt to reduce my dose. Very slowly, no rush, and I’ve been able to come down from 5mg to 2.75 mg with absolutely zero problems. Slow was the key.

 

In Mid October (2019), I made the 3mg to 2.75 mg cut. No problems, maybe sensitive to caffeine, which I need in my attention intense job, but nothing to even remotely complain about. Nov 12th, made the cut from 2.75 to 2.5mg. 72 hrs later (right on schedule), got the skin crawling and spike in anxiety. No ‘panicking’ as I was expecting it, although it was the first time a cut has produced them during this past year’s attempt.

 

A week later, typical symptoms for me: tension headaches, telescopic vision, muscle tension in my traps and face. Let it ride out. A week later, what I RECALL (should have kept a closer diary) being pretty much ok for several days. Then, bam, cycle restarted with the skin crawling.

 

Last Sunday (Nov 8th), decided to dose correct / partially reverse the cut. Added back 0.125 to be at 2.625. It’s been almost a week, and no change. I feel like this 2.5 — 2.75 mg zone is just tough for my neurobiology for whatever reason.

 

I think it may be prudent to revert back completely to 2.75, wait to stabilize for some time, and then start with smaller cuts.

 

I’ve been able to live a functional life, and I really want to focus on this relationship and work right now. What are your thoughts on correcting to 2.75 (which was totally fine), given 4 weeks have passed since the offending cut?

 

Thanks a ton. It’s been 12 years that I know I can count on you!

 

Note: first time I’m seeing my signature since 2012. Holllyyyy - not surprised I ended up where I was during that forced taper!

[[Ma...]]

Hey rolling, nice to meet you.  You know sometimes it takes the updose awhile to be felt, I might try a few more weeks.  Just my thoughts.  If by then you don't feel better, by all means, go back to where you were comfortable and slow the pace next time, and a lower dose cut.  Your relationship and work are very important  and if you can taper, even if very slowly and enjoy your life.  I say go for it.  Wish you lots of luck.  Check in with us so we know how you are doing.  Mary 🍀🍀🍀🍀

 

[[ro...]]

Hey Mary! Great to meet you too.

 

I needed this reminder / confirmation that even a dose correction can take longer than 7 days to return to the previous serum concentration (4-5 days) and then receptor configuration. Just wanna make sure I don’t overshoot a kindling timepoint.

 

Appreciate the backup! 👍

 

RR

[[du...]]

Hello  i am writing on behalf of my wife

we have been on RIVOTRIL and and antidepressant NARDIL[maoi] for 28 years 12 months ago after years of tolerance withdrawals which was only discovered through the internet

i have no regard for the medical profession  So we went to a new Dr and was told we had to come off the benzo started at 5 mg within 8 months got down to 2.375  went through absolute

hell not being able to function at all unable to shower just hot wash massive panic non stop just sat on her bed with acrophobia ect ect ect      the Dr said you have to keep cutting .25 every 2 weeks

that is when we found this group and decided to hold and left that Dr after 3 months my wife had tiny windows for the first time thought we were on our way .  Then PHIZER decided to put a hold on

production of the ANTIDEPRESSANT NARDIL so i am in Australia and finally got some from Canada but the formulation is slightly different and was too strong on 3x15mg [totally sedating to the point

of sleeping at the drop of a hat] so cut the NARDIL to 2.5 tablets now after a week off crashed to where we were before only hoping after holding on this it will lift again

thanks

 

 

[[va...]]

Hey guys,

I'm sorry so many of you are having it really rough. Trust me I relate to each and every one of you. I've been down and I've been punched, kicked and tortured from benzo wd. It is by far the most challenging thing I have ever faced. I am only living it up as best as I can bc I don't know when my next "beating" will come. The long timers around here know this very well about me. I've had panic and anxiety that has been off the charts! Sweats, dizziness, brain fog, headaches, inner tremors and vibrations, feelings of being electrocuted, dp and dr , mood swings, insomnia, breathlessness, chest pressure, fast heart rate, low heart rate, high BP, low BP, depression, that made me think about wanting to kill myself and I'm sure there's more but you all get the picture. I just want you all to know that even though I'm feeling good right now I am still in those trenches with you! This is absolute hell to go through. So listen my friend's when those windows come and they will you better grab whatever life you can get your hands on! Get out of the house and do things you love.. And if you can't remember what you used to love before this god forsaken nightmare find new things that interest you. Life is too short so when I feel good I'm out there doing as much as I possibly can bc I know that benzo devil will be back at my heels again. I'm already trying to push thoughts out of my head about another 12 months of tapering ahead of me. I was just thinking this morning that this is my second Christmas here at the LHSG and it's not going to be my last! I'm sure I'll have at least 2 more here. So my friend's be patient while waiting for those windows to open up wide and when they do take in big deep breaths and live, live, live! Life is beautiful, life is a gift and as much as we hate suffering , especially me, it's also part of life.

 

Sending up those prayers guys 🙏

 

Love to all of you ♥️

 

TT wishing on all those 🌠's for sweet, beautiful Windows for all of you. That's my Christmas wish 🌠🙏

 

Trishy you brought tears to my eyes with your beautiful yet sad post. I'm sorry you'll have to be here for at least another year. I will obviously be right here with you. I'm hoping things get a bit easier for us.

[[va...]]

So happy for you T.  It's great to see you and Kitty loving life and I really enjoy hearing about your travels.  Gives me something to look forward to.

 

 

 

Has anybody tread the thread about DNRS under the Alternative Therapies section.  It sounds really promising.  I read all 8 pages.

 

GP no I haven't read it but if you say it's promising I'll make time later in the day to read it. I sometimes fantasize with some invention that will come up and heal us all.

[[va...]]

Hi Dusty. It's really unfortunate that on top of going through benzo withdrawal, they've stopped commercializing her antidepressant. I think it's a good sign that she started to have some windows. Even if she's having windows, her improvement will be very slow after such a big crash so it's better not to expect fast improvements and to be thankful for the few windows she has. I would hold the rivotril for a very very long time. Then I hope they solve the problem with that antidepressant. You did a great job getting it from Canada. It's a shame that the formulation is different. I hope she can at least stabilize on her antidepressant. The benzo hold will take a while to make her feel better. She's very lucky to have such a supportive husband and with you by her side I hope she stabilizes. It's important to stress that after such a crash and the change in her AD, stabilizing will take months, not weeks. I'm glad you found us.

[[va...]]

Rolling I'm glad you came to the group and I'm sure Mary gave you great advice. I don't know much about k but I waited more that a month to upsose the Valium and now in retrospect I realize that was a mistake. I did a lot of damage during more than a month in the pit of acute hell, and had I updosed immediately maybe I would be stable by now and not holding her forever. That's just my experience but of course I was really in a condition where it was absolutely obvious I had to updose, but I didn't know it then, this all caught me by surprise. I'm so glad you've been able to hold a demanding job and meet your soul mate during these years. I'm even tempted to go on 5mgs k and forget about BBs!!!  But of course I won't, because it probably wouldn't work anyway.

[[Tr...]]

Good morning,  everyone.  Hope your sleep was long, deep and peaceful.

 

Trishy,  what a wonderful post. Sad, but at the same time inspiring!

 

Valiumnomore,  how was your sleep?  Hopefully you"ll be having a good day!  Did you manage to get out after all  yesterday?

 

I had a very good night: slept 7 hours with just one bathroom visit. Woke up at 6 and was able to stay in bed until 7.45. Hardly any anxiety and muscle pain that was quite bearable. One of the best nights this year! So grateful for this great start to the day. We've all seen worse, I'm sure.

 

Wishing us all a symptom free Sunday. 

[[va...]]

Hi everyone, Sunday today, 9:32 a.m. I'm going to have breakfast at a bar with mother and daughter. This is a different bar so I'm afraid I won't see baldy. I'll report if there's any other interesting candidate in this other bar but I doubt it. Then I'll come home and do some exciting paper work and I have to prepare the Christmas cards. My daughter does beautiful drawings on them as she's a very gifted artist.

 

I hope we have a bearable sxs day.

See you later, VNM

 

[[Ol...]]

Hey guys,

I'm sorry so many of you are having it really rough. Trust me I relate to each and every one of you. I've been down and I've been punched, kicked and tortured from benzo wd. It is by far the most challenging thing I have ever faced. I am only living it up as best as I can bc I don't know when my next "beating" will come. The long timers around here know this very well about me. I've had panic and anxiety that has been off the charts! Sweats, dizziness, brain fog, headaches, inner tremors and vibrations, feelings of being electrocuted, dp and dr , mood swings, insomnia, breathlessness, chest pressure, fast heart rate, low heart rate, high BP, low BP, depression, that made me think about wanting to kill myself and I'm sure there's more but you all get the picture. I just want you all to know that even though I'm feeling good right now I am still in those trenches with you! This is absolute hell to go through. So listen my friend's when those windows come and they will you better grab whatever life you can get your hands on! Get out of the house and do things you love.. And if you can't remember what you used to love before this god forsaken nightmare find new things that interest you. Life is too short so when I feel good I'm out there doing as much as I possibly can bc I know that benzo devil will be back at my heels again. I'm already trying to push thoughts out of my head about another 12 months of tapering ahead of me. I was just thinking this morning that this is my second Christmas here at the LHSG and it's not going to be my last! I'm sure I'll have at least 2 more here. So my friend's be patient while waiting for those windows to open up wide and when they do take in big deep breaths and live, live, live! Life is beautiful, life is a gift and as much as we hate suffering , especially me, it's also part of life.

 

Sending up those prayers guys 🙏

 

Love to all of you ♥️

 

TT wishing on all those 🌠's for sweet, beautiful Windows for all of you. That's my Christmas wish 🌠🙏

 

Thanks Trishy, I feel the same. This will be my 3rd Christmas on BB, and that is very depressing. I too am feeling ok right now but nothing compared to my old self. I remember what I used to love before but I have no desire or motivation to do it any longer. Thankful for all of you LHSG'ers, best group on BB. Love ya

[[Ol...]]

Hi everyone, Sunday today, 9:32 a.m. I'm going to have breakfast at a bar with mother and daughter. This is a different bar so I'm afraid I won't see baldy. I'll report if there's any other interesting candidate in this other bar but I doubt it. Then I'll come home and do some exciting paper work and I have to prepare the Christmas cards. My daughter does beautiful drawings on them as she's a very gifted artist.

 

I hope we have a bearable sxs day.

See you later, VNM

 

VNM, baldy will miss you!! Maybe he'll finally ask you out when you go back to your regular bar. 

[[va...]]

Hi everyone, Sunday today, 9:32 a.m. I'm going to have breakfast at a bar with mother and daughter. This is a different bar so I'm afraid I won't see baldy. I'll report if there's any other interesting candidate in this other bar but I doubt it. Then I'll come home and do some exciting paper work and I have to prepare the Christmas cards. My daughter does beautiful drawings on them as she's a very gifted artist.

 

I hope we have a bearable sxs day.

See you later, VNM

 

VNM, baldy will miss you!! Maybe he'll finally ask you out when you go back to your regular bar. 

 

Kitty, poor Baldy, oblivious to the fact that he's become a celebrity in a benzodiazepine withdrawal forum 

[[Tr...]]

Valiumnomore, 

[[Tr...]]

Hi everyone, I had a Window this morning. First one in almost three months. Felt great, took a walk, visited a neighbor. It's now 3 pm. and I can feel it closing slowly. Hope it stays open just a bit longer and opens up again soon. I can recommend them!

[[Ma...]]

Hi everyone, Sunday today, 9:32 a.m. I'm going to have breakfast at a bar with mother and daughter. This is a different bar so I'm afraid I won't see baldy. I'll report if there's any other interesting candidate in this other bar but I doubt it. Then I'll come home and do some exciting paper work and I have to prepare the Christmas cards. My daughter does beautiful drawings on them as she's a very gifted artist.

 

I hope we have a bearable sxs day.

See you later, VNM

 

VNM, baldy will miss you!! Maybe he'll finally ask you out when you go back to your regular bar. 

 

Kitty, poor Baldy, oblivious to the fact that he's become a celebrity in a benzodiazepine withdrawal forum 

 

That's hilarious Vali, get his attention girlfriend, you can do it

[[Ma...]]

Hi everyone, I had a Window this morning. First one in almost three months. Felt great, took a walk, visited a neighbor. It's now 3 pm. and I can feel it closing slowly. Hope it stays open just a bit longer and opens up again soon. I can recommend them!

 

That's great Troch, they are wonderful.  Hope it will open too! 

[[Ma...]]

Hey Mary! Great to meet you too.

 

I needed this reminder / confirmation that even a dose correction can take longer than 7 days to return to the previous serum concentration (4-5 days) and then receptor configuration. Just wanna make sure I don’t overshoot a kindling timepoint.

 

Appreciate the backup! 👍

 

RR

 

We will be here RR, to help or just chat, Mary  :D

[[va...]]

Thanks Mary, we have to give up on Baldy, he's only interested in his computer.

 

Troschetter it's amazing you had a window. Now I'm jealous.

 

I never really have windows, just days with less symptoms. I started off this adventure in summer after I started holding, with an app where I noted down anxiety and depression from 1 to 10 each day. Two months ago I lost my patience with this and from then I just have three categories. Each night I note down beside the date : "sucked", "sucked less", or "better". I think one day I had a two hour window, one morning. I hated it when it was over so frankly if they're only going to be two hours a month, I'd rather just not have them. I'd rather heal more lineally.

[[ro...]]

 

We will be here RR, to help or just chat, Mary  :D

 

Thanks, Mary! Can't tell you how much I appreciate it. Hopefully, even if I recover, I'm going to make an effort to be on the boards more to provide support and guidance. 12 years of experience, so happy to provide my leanings, but also just being there for everyone.

 

Rolling I'm glad you came to the group and I'm sure Mary gave you great advice. I don't know much about k but I waited more that a month to upsose the Valium and now in retrospect I realize that was a mistake. I did a lot of damage during more than a month in the pit of acute hell, and had I updosed immediately maybe I would be stable by now and not holding her forever. That's just my experience but of course I was really in a condition where it was absolutely obvious I had to updose, but I didn't know it then, this all caught me by surprise. I'm so glad you've been able to hold a demanding job and meet your soul mate during these years. I'm even tempted to go on 5mgs k and forget about BBs!!!  But of course I won't, because it probably wouldn't work anyway.

 

Hey VNM, thanks for welcoming me (back!). Very appreciative of the advice you and Mary have given me. Slightly different timescales, but overlapping concepts. I, myself have some experience with this as my previous horrible ordeal (8 yrs ago) was set off by a PCP forcing me to rapidly taper from 3.5 to 2.75mg over about 3 weeks. Only when she had seen me suffering for almost half a year, following that did she allow me to updose -- this after me bringing her every possible paper to show her the error of her ways. I had just finished my PhD at the team (molecular biology), so I was explaining in great detail to her the nebulous neurobiological dynamics of GABA-R regulation. That said, anyone going through this basically has a post-doc in this subject. Well informed patient group!

 

 

In any case, that updosing did absolutely nothing but pump me up to 5 mg, and still then, I didn't recover, eventually having to get onto gabapentin. (Took me another 2.5 years to be on it and then come off it). Point being that I strongly believe that updosing when you hit a critical theshold, whether you want to call it "dose correction" or "cut reversal", should be done within a certain window. To Mary's point, maybe it can be a bit longer, in order to 'feel' the updose, but probably not a whole lot more.

 

FTR, I updosed last week this time (Sunday) from the 2.5mg to 2.625, and since then have seen a slight diminution of symptoms, but still very far away from 'recovery' from the cut. Because I don't think it's that big of a loss to reverse my 2.75 to 2.5mg cut, this morning, I took half of what will eventually be a daily dose of 2.75mg. Certainly not expecting to feel anything for a few days, but I want to avoid total disaster here, so thanks for your reminder that perhaps it's just safer to cover my bases.

 

Now, it will have technically been 4 weeks + 4 days since updosing to my previous stable dose (2.75mg), but the past 1 week of that encompassed updosing 50% of the way (2.5 --> 2.625 1 week ago --> 2.75 by the end of today). Hopefully I'm still within the window.

 

I think that if i was as close as you, at 2.5 V, you're doing the right thing. You're so close to the end, I'm jealous (in a positive way).

 

Definitely something that can't be said enough is to listen to our bodies. Even at 2.75, things weren't perfect, but I was still living a good functional life. Should have tried to take a pause, wait a few more than 6 weeks to make the 9% cut, given that I now have supportive doctors. It was in fact, in good faith that I made the cut to pay my side of the bargain given the patience my main pysych has had with me. Communication is critical.

 

Anyway, will keep you all posted, if for no other reason to generate another data point / case study for dose corrections.

 

Wishing everyone a symptom free Sunday! 

 

RR

[[Ma...]]

So happy for you T.  It's great to see you and Kitty loving life and I really enjoy hearing about your travels.  Gives me something to look forward to.

 

 

 

Has anybody tread the thread about DNRS under the Alternative Therapies section.  It sounds really promising.  I read all 8 pages.

 

I haven't yet, but plan on it today.    How are you today GP?  Keeping a check on you  . LY,

Mary 💜💜💜

[[Ma...]]

RR, please , everyone has a view of updosing or dose correction, there is a thread on that alone, if you are interested in reading or contributing to that, go to Homepage and scroll down, I believe it is under Support Groups.  Glad to have you with us