The Long Hold Support Group

[[Gu...]]

I hope it helps GP. I noticed a lot of my cog fog also went away. I think there's a correlation between pain and cog fog

 

 

Oh how I would love to get rid of the cog fog!

[[Gu...]]

LILY

Hi Guinea Pig, I saw in your bio notes you mentioned not ever trying to taper ambien and benzos at the same time (which is what I’m kind of wresting with at the moment) - any suggestions as which to prioritize first? Thanks! 

 

 

 

In my opinion, since you’ve already started tapering your benzo, I would stick with that.  I was in a very good place at 1.80 and I thought I could hold there and try to taper the Ambien down to 5 mg.  What a bad mistake.  I’ve read that it’s best to taper one, then wait a year to taper another med.

[[Ma...]]

Hey everyone! I’m back from my camping trip, we had so much fun! It was the most people I have been around in 4 months.. there were maybe 15 people there but it was a huge campsite with no other people around, and we were all very careful to social distance, each pod had our own kitchen, etc. it was very cool. And I was away from cell service for a whole week, what a relief!

 

We went to a couple of lakes, also very nice. It felt almost ‘normal’. Almost 7 months off of Valium!

 

What would we do without living through you OK!!  🙋🏼🙋🏼💜😘🙏😷💜😘🙏😷

[[Gu...]]

Meems,  I’m so sorry you lost your cat to cancer.  What a awful thing to go through right now.

[[ja...]]

hi Jwl, do you feel good on 1mg of valium? have you experienced tolerance?

how long did it take you to taper 20mg to 1mg of valium?

 

Hi Jasmine. Yes I feel really good except I'm kinda in a wave because of my tooth infection. I'm not sure what you mean by tolerance. If you mean did I ever reach a point where it was not having any beneficial effects then probably yes. If you mean did i ever experience tolerance WD then no. Every time I held I felt better. I've been tapering on and off for about 5 years. That's including many holds. But I'm probably an exception.  Many people have tapered much quicker with very little symptoms. Don't get discouraged that you've reinstated at 9 mgs. That's really not very much. I think your main priority should be to get stable.

 

hi Jwl, have you tried to get off before?

5 years taper is not a long time . the last time it took me 3 years to taper 4mg. and it was already really hard.

did you have anxiety and adrenaline surge during your taper?

 

Before I found BB, I tried to CT and experienced all the sxs you've described. It took me almost a year to get stable so I guess you could say I've been tapering for 6 years. Unfortunately, for those of us who've CT or tapered too fast, our CNS got screwed up and we've become hypersensitive. I've found the only solution is to take it nice and slow.

 

Don't give in to the fear that you have get rid of the "poison" ASAP.

 

Keep posting on this thread. I for one am thankful it's here.

 

thank you JWl,at the moment i just want to remain functional.

did valium ever turned on you? did you ever feel like you need more of it?

were you prescribed for anxiety?

i do not plan to taper in at least a year if i don't develop tolerance.

how is your sleep?

do you feel okay being on 1mg for this long?

 

[[ja...]]

for people who hold long enough, did the night time adrenaline surge go away?

is it possible to taper and not have the morning surge come back?

 

it is day 5 for me, i am feeling a ton better already.

i am still dreading the night time though, may the lord have mercy on us.

 

the suicidal thought is gone with the akatisia.

sometimes i worry that i have developed permanent damage and that the buzzing, adrenaline surge will stay with me for the rest of my life and for me there is no way to live like this.

i have read some scary story about people ending their life cos they have been debilitating their whole life.

 

i have a very good spych, a loving husband, a boy 5 years old and a girl 9 years old. i am a 45 asian woman. i speak french and vietnamese.

i just want to be like you JWl, take my time and have an easy way to get off that stuff even if it takes decades

 

[[Ma...]]

Hi everyone  - been a good while.  So I had to put my cat to sleep on Sunday night here at home.  She had been diagnosed with cancer 3 months ago and in the last month started going downhill Where I had to care for her round the clock. Finally I had to do what was right by her.  I have been stable in my taper, so much so that I was able to drink iced coffee and eat some shitty foods.  Being stable I was able to handle helping her. Now, the stress Of her death had triggered acute sxs.  I have the worst panic and anxiety adnd had a bad attack last night-bad dizziness. This is my first pet.  Plus as some of you know I am my moms elderly caregiver.  I need to update my signature as I’m down to 4.65mg V. 

😿😿😿😿

Meems

 

Oh Meems, I am so sorry, but very glad you were feeling good enough to take care of her at the end.

I hope these bad symptoms ease very quickly.  You were a good mom and she was very lucky to have you.  Loosing a pet is always very hard, know we all love you and will be here for you.  Mary

🙋🏼🙋🏼🙋🏼.  💜😘🙏😷💜😘🙏😷.      🌈🐱.  She crossed the Rainbow Bridge and now is with all our pets that have passed away.    💕💕💕

[[Me...]]

Thank you GP and Mary.  Maggie was such a lovely cat.  I’m so heartbroken but it was time and there was no more I could do for her.  It was a peaceful to see her go and luckily in the comfort of her home.  Tomorrow I have an appointment via phone with a pet bereavement therapist.  Because I have pre-existing PTSD I think I need some emotional and psychological support.  I loved my big girl so much.  So so much.  So needless to say, I’ll be holding for a while.  However long it takes through the grieving. 

 

Jasmine- oh I hear you.  I had bad adrenaline surges at night and in the morning as well as akathisia.  It has lessened from holding.  Those were 2 big ones for me.  As well as morning anxiety and DR. 

 

I’ve been stable but since my pet loss the sxs of panic and anxiety attacks have been triggered. So I’ve had a setback.  Will be holding for however long it takes through the grief. 

 

If you look at my signature, I have a failed attempt at a cold turkey and a fast taper from 10mg until I got to 5mg of Valium.  So I messed up my CNS and I also have pre existing condition of PTSD. 

 

But in my experience, the adrenaline surges, akathisia, DR lessened. I also had bad morning nausea.

Hang in there. 

 

Love,

Meems

[[...]]

hi Jwl, do you feel good on 1mg of valium? have you experienced tolerance?

how long did it take you to taper 20mg to 1mg of valium?

 

Hi Jasmine. Yes I feel really good except I'm kinda in a wave because of my tooth infection. I'm not sure what you mean by tolerance. If you mean did I ever reach a point where it was not having any beneficial effects then probably yes. If you mean did i ever experience tolerance WD then no. Every time I held I felt better. I've been tapering on and off for about 5 years. That's including many holds. But I'm probably an exception.  Many people have tapered much quicker with very little symptoms. Don't get discouraged that you've reinstated at 9 mgs. That's really not very much. I think your main priority should be to get stable.

 

hi Jwl, have you tried to get off before?

5 years taper is not a long time . the last time it took me 3 years to taper 4mg. and it was already really hard.

did you have anxiety and adrenaline surge during your taper?

 

Before I found BB, I tried to CT and experienced all the sxs you've described. It took me almost a year to get stable so I guess you could say I've been tapering for 6 years. Unfortunately, for those of us who've CT or tapered too fast, our CNS got screwed up and we've become hypersensitive. I've found the only solution is to take it nice and slow.

 

Don't give in to the fear that you have get rid of the "poison" ASAP.

 

Keep posting on this thread. I for one am thankful it's here.

 

thank you JWl,at the moment i just want to remain functional.

did valium ever turned on you? did you ever feel like you need more of it?

were you prescribed for anxiety?

i do not plan to taper in at least a year if i don't develop tolerance.

how is your sleep?

do you feel okay being on 1mg for this long?

 

No Valium never turned on me although I did have to updose a few times. I don't think you need to worry about tolerance. My sleep is fine although I am on Trazadone and take melatonin. Yes I feel fine being on 1 mg for 2 years.

[[gi...]]

LILY

Hi Guinea Pig, I saw in your bio notes you mentioned not ever trying to taper ambien and benzos at the same time (which is what I’m kind of wresting with at the moment) - any suggestions as which to prioritize first? Thanks! 

 

 

 

In my opinion, since you’ve already started tapering your benzo, I would stick with that.  I was in a very good place at 1.80 and I thought I could hold there and try to taper the Ambien down to 5 mg.  What a bad mistake.  I’ve read that it’s best to taper one, then wait a year to taper another med.

 

Thank you! My dr switched me from 10mg ambien to 5mg after that study came out last year about how women shouldn’t be on 10mg and it wasn’t the worst thing in the world but I don’t know what sleep would look like without ambien and xanax since I’ve been used to it for so long. I’m happy to hold right now especially during the pandemic but I’m thankful to hear other people’s stories

[[va...]]

Hi everyone,

 

It's early hours and I'm going to write a post before the day gets hectic. I'm drinking that nice coffee and just had some toast with blackberry jam. I slept five hours which is totally fine if you compare to last summer's hell.

 

Suzy I miss you and you haven't written in a while. Are you alright? Please tell us how you're doing. I really miss your posts.

 

Stutt, in case you're reading: good morning. I hope things are better on your end. I know your friends won't ever really feel "better" but at least I hope you're feeling a bit stronger. How's your daughter? Is she studying online for the next grade or will they be going to class? Here they still have no clue how they're going to do it. School starts mid September.

 

Jwl I'm so happy you're with us. You're a sound voice here and you have the patience to be a real LONG HOLDER and we need more of those. There's no point in rushing ourselves into hell. You asked if I wasn't stable after seven months. No, I never got stable but if you had been in my head during the crash last summer, I think you'd conclude that I'll probably never be stable again after that. It was pure hell. I can't give a lot of details because I don't want to trigger myself and others. I couldn't convey what was happening to me. I tried to pretend, even here, that I was better than I was.

 

Jasmine, last summer I was in a very bad place and also kept fearing about tolerance wd, paradoxical etc. and fearing everything in general. The fear hangs on to these possibilities you see? I would really try to stop reading scary stuff and try to focus on the more positive threads and posts. I remember I printed the posts that made me feel better and read them time and again on my sleepless nights. Most of those posts were Gardener’s to whom I’ll be forever thankful. You will probably have good days and bad days. I hope that every day you get better and better.

 

Mary have you decided to hold a year like you mentioned? If you're in such bad pain and you feel a hold would help, maybe that's the best option. Who knows with this drug right? I have this OCD now, every single day thinking "should I cut or should I hold?". Remember like that "the doors" song but now with these new lyrics. I hope you and Tim are safe over there. I haven't read the USA news lately so no idea what's going on in Texas but I'll take a look. Now we're all concerned about the money we need from the european union to not starve to death in the following two years. We're also praying that our corrupted politicians don't spend it on more corruption. At least you're in the first economy in the world. That should help.

 

Meems I'm so sorry for the loss of your cat. I don't know you much but I know your mom is very difficult and now this... Please receive a big hug. I lost my two cats last summer. As awful as it was, I was in such a state with the benzo crash that my feelings were somehow cushioned by the other kind of suffering. I started mourning when I started to stabilize. In fact I’m still mourning. I think it's great that you hold until you feel a bit better.

 

Trishy so you decided to hold? I was also in doubt like I told you, and now I think I’m not cutting on August 1st which would be one month since my last 5% cut. I’m not stable AT ALL, mentally, and also I read that Jwl mentioned that he held in order to focus on healing his physical ailments, and it happens that my muscle pain has been so bad for so long, and now I’m spending my money on going to the physiotherapist twice a week instead of once, and I hope all my pain will improve with this, but of course what’s the point of spending all that money if I make a cut that brings more muscle tension again? This goes for Mary too in case you’re interested Mary. Anyway this is what I think today. In one week I might change my mind about the cut.

 

Guinea Pig, you sound so sad because of the pain. It’s really very draining. Pain sucks the life out of us. I hope the LDN eases your pain or that you suddenly get a good window and start enjoying life a bit. With all this pain and crap we haven’t designed classy/sexy pandemic attire and we both know the world is in bad need of it.

 

Olive Kitty, Mary is right, thank God we can all live through you. You’re the only one who comes and tells us life is fun and great at times. I’m so happy for you. I’m sure you’re still missing the real Olive Kitty and I’m sending you a big hug too.

 

Kitsune I hope you start to feel better with your long hold. It can really take a while to feel better. Wishing you many windows.

 

I know I haven’t named everyone because we’re a big group now, which is great. I don’t remember everyone right now but all I want is for every single person in this group to get better and be able to lead a decent life, regardless of how slow their taper is or how fast they come off benzos or if they even come off benzos at all. Life is here now and we have to live it whatever benzo point we’re in. It’s not like we can go on a roller coaster in an amusement park in our condition, but we can try to find little things to make life worth living instead of waiting to be happy when we’re off the benzo. I’m saying this to myself but maybe someone else wants to hear it.

 

Stutt, I hope you have woken up to a better day like you always tell us. You’re almost there and I’m so jealous of you, but still so happy for you.

 

[[Tr...]]

Hi everyone,

 

Hope you're all doing better.

 

Val:

Quote:....I know I haven’t named everyone because we’re a big group now, which is great. I don’t remember everyone right now but all I want is for every single person in this group ...to get better and be able to lead a decent life..., regardless of how slow their taper is or how fast they come off benzos or if they even come off benzos at all. ...Life is here now and we have to live it whatever benzo point we’re in.... It’s not like we can go on a roller coaster in an amusement park in our condition, but we can try to find little things to make life worth living instead of waiting to be happy when we’re off the benzo. I’m saying this to myself but maybe someone else wants to hear it...

 

This is so very true! No matter how we feel or where we are in this tapering ordeal, we must try to keep living and not wait until after we finished our taper. We all know how hard to do that can be at times, but this must be are motto.

 

Update:

 

I'm doing pretty well at the moment: after a 4 week window, I had a 1 week wave. That was quickly followed by another window, which has been open for over 2 weeks now. My feet are my biggest issue right now. But I started to pick up my old life again: going for a nice bike ride every day, enjoying the summer weather, going fishing again. Basically feeling much better! First and foremost because my anxiety has been gone for quite a while now. Plus that awful, awful nausea: gone!

 

I learned the hard way to taper very slowly. But...the snail and the cheetah both have New Year's eve on the same day...

 

Wishing you all a nice day. And stay strong, no matter how bad some days may be!

 

 

 

[[St...]]

Good morning LHSG hoping everyone has a better day.

Morning Val lovely post honey.l am sorry you have the will l won't l cut crap that we all have.You are doing the right thing focusing on your physical pain if you can get on top of that aspect it will definitely help you.l have to say we are all on these drugs for a reason and that should be the thing we work on.Withdrawal will always hit us at our weakest spot.

My daughter passed her exams so woohoo next year who knows what will happen.l really hope they get back to university but we will have to see how it goes.There is no doubt we are heading for a second wave however l can't see the country being locked down again.We are in bad enough shape as it is.

I hope you are able to get out and about more.You will get to where l am it just takes so damn long but it will happen.Hang in there my lovely.love you.X

Morning Troch you really have come so far that is amazing woohoo 🎊🎉.Well done honey l have no doubt you will get off this poison.l know you are still suffering however you are definitely a lot better than you were.Keep creeping forward and keep your mindset right.Love you.X

Morning Jasmine l can feel your anxiety and to be honest with you honey that is perfectly normal at this stage.Now your future is not anyone elses so please be patient and give yourself time to heal.l would also caution you regarding giving your phone number to anyone.We are nameless faceless people on a forum so don't take any risks.l know your scared however it will lessen given enough time.Work on yourself honey the more you can work on coping strategies for anxiety the better you will cope during and after your taper.love you.X

Morning GP you sound depressed honey.How long have you been holding?I know you will get through this you have been here many times.Hang in there honey.love you.X

Morning Suzy where are you at?Are you lurking?l hope you are ok? love you.X

Morning Ginger l hope you are enjoying your break?l also hope the wave has eased off? love you.X

Morning Olive awe that sounds amazing.You deserve it.Where are we off to next 😁? love you.X

Morning JWL glad to see you are doing well.I think you will get off with little bother.Well done honey.love you.X

. Morning Meems l always know you are not feeling great when l see a post from you.Sorry about your kitty but you did the right thing.You gave her a loving home and you will never forget her.Stay strong love you.X

Morning Lady Mary well hen you aren't around much due to the drilling?l really hope it stops soon honey.Give my boys a hug from me and hang in there.love you my lady Mary HenX

. Thinking of all my buddies here.Love you all.X

[[St...]]

Morning Trish you are being a bit quiet for my liking it is never a good sign.Listen twiny if you are able to cut just do it stop giving your anticipatory anxiety time to overwhelm you.You have a mental block because you are now under 1 mgs?l know this is scary honey no one wants to suffer however we will and do get through it.

  I have had that particular emotional blunting for years and l have no doubt it will pass.Sadly it doesn't blunt the fear and anxiety.

Now pull those big girl pants up and try to get through your day the best you can.That really is all any of us can do.love you my lST X

[[ja...]]

 

Jwl I'm so happy you're with us. You're a sound voice here and you have the patience to be a real LONG HOLDER and we need more of those. There's no point in rushing ourselves into hell. You asked if I wasn't stable after seven months. No, I never got stable but if you had been in my head during the crash last summer, I think you'd conclude that I'll probably never be stable again after that. It was pure hell. I can't give a lot of details because I don't want to trigger myself and others. I couldn't convey what was happening to me. I tried to pretend, even here, that I was better than I was.

 

Jasmine, last summer I was in a very bad place and also kept fearing about tolerance wd, paradoxical etc. and fearing everything in general. The fear hangs on to these possibilities you see? I would really try to stop reading scary stuff and try to focus on the more positive threads and posts. I remember I printed the posts that made me feel better and read them time and again on my sleepless nights. Most of those posts were Gardener’s to whom I’ll be forever thankful. You will probably have good days and bad days. I hope that every day you get better and better.

 

 

can you direct me to gardener post?

when you hold long enough, can you have only have good days?

did you cut too fast from 10mg to 5mg? how long where you on back on valium?

 

have any of you tried daily micro taper?

 

i have a straight 8 hours of sleep last night, no adrenaline surge- day 6 of re-instatement. i thank the Lord for that.

i still feel very fragile.

i don't want to come on BB very often, so much suffering. people who suffers indefinitively for years after.

i am scared/ my husband put a firewall and i only check it once a day.

 

i went to the protracted and it is very very scary. why do people suffer so long after they stopped? any idea?

 

 

 

[[ja...]]

also:

 

has anyone been able to live a normal life on valium? no increase in anxiety?

been able to cut at a snail pace rate and no symptoms? no return of akatesia

 

please tell me that you exist.

what is your maximum hold?

 

[[ja...]]

hi Trochsetter

what caused your polyneuropathy?

[[ja...]]

valiumnomore

are you stable now? how long have you been holding?

[[ja...]]

hi Jwl, do you feel good on 1mg of valium? have you experienced tolerance?

how long did it take you to taper 20mg to 1mg of valium?

 

Hi Jasmine. Yes I feel really good except I'm kinda in a wave because of my tooth infection. I'm not sure what you mean by tolerance. If you mean did I ever reach a point where it was not having any beneficial effects then probably yes. If you mean did i ever experience tolerance WD then no. Every time I held I felt better. I've been tapering on and off for about 5 years. That's including many holds. But I'm probably an exception.  Many people have tapered much quicker with very little symptoms. Don't get discouraged that you've reinstated at 9 mgs. That's really not very much. I think your main priority should be to get stable.

 

hi Jwl, have you tried to get off before?

5 years taper is not a long time . the last time it took me 3 years to taper 4mg. and it was already really hard.

did you have anxiety and adrenaline surge during your taper?

 

Before I found BB, I tried to CT and experienced all the sxs you've described. It took me almost a year to get stable so I guess you could say I've been tapering for 6 years. Unfortunately, for those of us who've CT or tapered too fast, our CNS got screwed up and we've become hypersensitive. I've found the only solution is to take it nice and slow.

 

Don't give in to the fear that you have get rid of the "poison" ASAP.

 

Keep posting on this thread. I for one am thankful it's here.

 

JWL, why are you on gabapentin and naltrexon?

[[ja...]]

just one benzo, valium.

but i am afraid to take it and i have immense anxiety. the pacing is back.

i keep thinking that the valium doesn't work anymore but my husband said that is because i haven't taken enough.

my doctor wants me to take enough to calm down for a week and then find the dosage that i can stay on for a while to stabilize.

i am worry that if i take 10mg, i will be stuck with 10mg for the rest of my life.

i have a fear of benzo, but my akathisia was so bad that i decided to go back on it or take my own life.

i am okay with taking benzo for 0.5mg for the rest if my life but not 10mg

my husband thinks that my priorities right now is to stabilize.

i have 2 small kids.

 

my symptoms are:

full body jerks

• • insomnia
    akathesia
    fear
    burning
    head buzzing
    heart palpitations
    adrenaline surge night and day
    complete incontinence, i have to wear an adult diaper
    loud Tinnitus
    
  • 
    

   

  [*]

when i take my valium most of them disappear.

 

i am worried that my doc doesn't know what she is doing.

she wants me to stabilize first and then later think about tapering.

i am so afraid of tapering from 10mg, it will take me ages since i am already so kindled

Morning Jasmine sorry you are suffering so much.Now if you have a compulsion causing you to self harm get yourself into a secure unit until this can be sorted out.l know for sure your husband will try to keep you safe however if someone is determined to do it they need a lot of supervision.

.I don't care if you are kindled etc this is about saving your life so take the benzo . This will settle given enough time however if you are a danger to yourself get the help you need.

I have to say you are a wife and a mother so you owe it to your family to stay safe.l am dealing with this at this time and the fallout from suicide is beyond wordsThat is not a legacy you want to leave to your family.X

 

hi Stut, i looked at yoru signature. you are on a very low dose, are you doing well now?

[[va...]]

Trotschetter sorry I forgot you today 

 

I'm so glad that you're finally feeling better and enjoying life a bit. Pain is really tough to endure and even though we try to ignore it, it can only be ignored to a certain extent. I'm glad to hear from you.

[[va...]]

Jasmine if you go to my first posts in this forum, which is easy just clicking on my profile, you'll see the posts where Gardener and Cantfly came to my rescue. I'll never be able to thank them enough. Those posts were very helpful.

 

I would not, ever, go to read the protracted and the CT boards in your state. What are you doing that for? Just stay a way from negative. We can't do it for you.

 

Most of us ended here due to a rapid taper (rapid for each of us, not rapid for ashton's standards), so I really don't know people who came here with a severe state caused by a setback after being off the meds for almost a year, like is your case. That's why I'm not really sure if what applied to me would necessarily apply to you, you see? Again, I'd stay on one stable dose and not make changes. Changes make stabilization impossible. There's no more I can say. We're all learning here. If you feel better with the 9 mgs, stay on them. All days won't be good. Stabilizing takes a while.

[[ja...]]

but when stabilized, do you feel good most of the time?

[[va...]]

but when stabilized, do you feel good most of the time?

 

I certainly don't feel good, but nothing like the hell I was in when I crashed. I can live like this, I couldn't live like that. You need a lot of reassurance and I get that. It's a symptom. Nobody can tell you how things are going to be, but normally when people hold for a long time, things get better. At least that's what we've all done here.

[[va...]]

Jasmine, this was me one year ago in this post, and there's one of Gardener's comforting posts to me. I hope it helps you too.

 

http://www.benzobuddies.org/forum/index.php?topic=151673.msg2893488#msg2893488