The Long Hold Support Group

[[be...]]

thanks MAry for the G'morning 

 

Oh . I'm having such a rough time of it .... rapid cycling of symptoms this morning , feeling depressed about it all with feelings o fragile and disabled. I hate it . It's getting harder and harder to keep my spirits and hope up I have to say , even though fundamentally I know I will heal eventually , but how long and what cost ??

 

Sorry , It's just been such a rough week .

Love to everyone ,

MiYu

MiYu, so sorry you have such a hard time, I keep thinking what can we do to help you, it seems you are doing the best you can during a very hard time over and over. I can be here, and I will Pray for you more, as you have been in My Prayers for a long time, but please know that I see believe that one day you will write your Success Story. Stay Strong.💖 Peace and Healing Hugs My Friend.

[[Su...]]

Good morning LHSG!  I owe Stut a good morning and well wishes to the group , so here goes.....Cant, MiYu, begood, Gard, NJ, TMB,SS, ITBO, Trish, bluepill,Esperanza, calendar, and nla.  Gosh, I hope I didn't miss anyone  hoping Stut's having a blast and the rest of you are lucky enough to have a good day too. 

 

:smitten: ❤️ ❤️ Stut and Mary X.  :laugh:

Morning Mary, you did Stut proud. Have a nice day also. 💖 Peace and Healing Hugs.

 

That was fun, but maybe not every day like Stut does it :laugh:

 

That was fun!

thanks Mary

SS

Hey SS, miss talking to u, but keep up with you, reading 📖 cautiously 

 

 

 

Yes being in the country really cuts down on BB time -- but I'm here, with all of us -- holding pattern and all 

 

Hope you are doing well there friend!

SS

[[...]]

Trish , Mary, Begood , SS , thank you for your love , support and prayers, it means a lot to me . I hate not writing any good news about my own process, but I have to believe that I WILL get a break one day , somehow .

And then I will do a really WOOHOO post .

 

May it come soon , and for anyone who is having a rough time right now .

Sometimes  I think 'what did I do to deserve this?' which i know is ridiculous, it's just another one of those thoughts that go along with feeling hopeless. They pass.

 

Tomorrow is another day , Hoping for a better one ,

 

love , MiYu :mybuddy:

 

 

[[Ca...]]

Trish , Mary, Begood , SS , thank you for your love , support and prayers, it means a lot to me . I hate not writing any good news about my own process, but I have to believe that I WILL get a break one day , somehow .

And then I will do a really WOOHOO post .

 

May it come soon , and for anyone who is having a rough time right now .

Sometimes  I think 'what did I do to deserve this?' which i know is ridiculous, it's just another one of those thoughts that go along with feeling hopeless. They pass.

 

Tomorrow is another day , Hoping for a better one ,

 

love , MiYu :mybuddy:

Miyu, Sorry to read.. It is just rotten... But you are right, It wont be forever, and things can change quick...

You are one strong woman.. let that carry you through...

 

[[He...]]

Hope everyone has a good Sunday. Glad Stut has had the opportunity to get away on a road trip. Hope she is having a great time.

MiYu, I am so bummed that you are down in the dumps again. I wish I had a magic bullet for you. But the fact that you are still hanging on, proves how strong and determined you are. You WILL get through this. You will! , just keep up the strength and patience and have faith that there is a light ahead somewhere.and you will get there!

I’m still hoping and praying and always thinking of you.  Be strong MiYu. We are all with you!

 

Heath :smitten:

 

Oh..and I’m doing ok. My little leap in my taper proved to be fine. I  Went down in dose with no new wdsx. All is well so far.

 

Heath

[[Ca...]]

Hi Guys,

Heath, -That is great to hear..!! I like those type of reports..

 

I had a healthy window today too.. Though still some odd stuff here n there.. like I woke after a nap to my brain tearing from my skull, turning into a wallnut.. -too hard to explain.. part real, part dream, part something I read here maybe..??

-Anyway, its official, Im nuts..

 

Still got the teens here, so thats great.. -a house full..

 

Hope Stut had a great time..

 

My best to Everyone..

 

[[Ma...]]

Good morning guys

Hope everyone struggling yesterday is doing at least some better today and all have something nice to experience.    :smitten:  ❤️ ♥️

[[Ca...]]

Good morning guys

Hope everyone struggling yesterday is doing at least some better today and all have something nice to experience.    :smitten:  ❤️ ♥️

Thank you Mary, I am..!!

 

How did you go with therapy..?? Are things any better for you??

 

And a Good Morning to you..

 

[[NJ...]]

Trish , Mary, Begood , SS , thank you for your love , support and prayers, it means a lot to me . I hate not writing any good news about my own process, but I have to believe that I WILL get a break one day , somehow .

And then I will do a really WOOHOO post .

 

May it come soon , and for anyone who is having a rough time right now .

Sometimes  I think 'what did I do to deserve this?' which i know is ridiculous, it's just another one of those thoughts that go along with feeling hopeless. They pass.

 

Tomorrow is another day , Hoping for a better one ,

 

love , MiYu :mybuddy:

 

Miyu,

 

I totally understand where you are as I am feeling the same way. The depression from feeling bad every day is worsening for me; it is difficult to deal with. I am also feeling hopeless. I visited my mom yesterday so was in the car for four hours round trip, and cried much of the way remembering better times, remembering how great I felt before this whole experience began. When the boys were young I worked just a little, so we were always off on a grand adventure. Now, I just find everything overwhelming.

 

This morning and yesterday, I did use CBD oil mixed in with some of the medical marijuana tincture I have made, and it is helping somewhat with the nausea but not as much as I had hoped. I really hate relying on yet another substance but I cannot do this everyday nausea anymore, and the marijuana seems like the best choice as it has fewer side effects than the nausea meds that are available. I just don't know what to do anymore. I need some relief. I cannot seem to find any real relief.

 

I am hoping once I get acclimated to the new job and begin cutting my dose a bit more aggressively, that the nausea may lessen. That has happened before ... that I felt better as I began cutting. I hope that is the case again. This hold unfortunately is not helping, but don't want to cut too aggressively with vacation/new job coming up again.

 

I have to admit though I feel closer than ever to just throwing in the towel and letting whatever doctor prescribe as much benzo or other medicine as I need to feel somewhat human. I am just so tired of this. The nausea has been present since January nearly every day ... it's a long time to push through everyday never seeing any improvement.

 

Hope everyone is feeling okay and hope Stut had a great time on her trip.

 

 

[[fr...]]

Ditto NJ, feeling hopeless also.  Been holding 7 months and getting worse.  I have nothing left. :'(

[[NJ...]]

Ditto NJ, feeling hopeless also.  Been holding 7 months and getting worse.  I have nothing left. :'(

 

Free,

 

Sorry you are feeling the same. The despair of not being able to find a way through is overwhelming. I was really hoping a long hold would help, but I have had no easing of symptoms even despite an updose a few weeks back. Hoping better days are ahead for us, Miyu, and others who need some relief.

[[fr...]]

Yes, praying for relief for us all. The fact that you work is amazing, you will make it.  I have nothing left, am housebound and on couch all day.  Pain overwhelming.  Just too hard,

[[be...]]

This post is for all that are suffering so much, please know that my heart goes out to each and everyone of you, if I could make it better I would. I know that each one of you struggling so much, keeps trying to find the soft spot, and it eludes you, I wish i knew, if I did I would be sending you all the remedy. I do believe in long holds, it has helped me so much this time, and this is going to be the last time I wage this battle. But sadly it does not work for everyone, I do not know why, some are more sensitive, is there too much lag time between the time one decides to hold...I read each post everyday and I cry with you, it breaks my heart. I try not to post much here, as I am doing well, and I know you all are happy, but I do not want to rub it in, so to speak, but all please know I am by your side and I will not leave, and Yes I have Hope for each one of you, please never give up or give in to the thoughts, just when it gets the darkest things may change.

 

I sometimes wonder if being on the meds during a hold may be working against those that are having such a time, but then if you taper, you get hit...I just do not know...but I do think and I will go to my death thinking that no one suffers forever. You may sometimes feel no one is listening or understand...but I do, because I was there twice and I do not know what I did other than, just get really mad at all of the problems and said no more...and decided to stay on the Valium forever...well after a bit, I knew that I could not be a prisoner to Valium and asides the FDA could decide to not make it anymore..so I am trying one more time. Please remember that I am Praying for each and everyone of you and many that are reading silently here, are beside you too, Please remember we will not let you go down the rabbit hole. 💖 Peace and Healing to All.  

[[fr...]]

Thanks BG.  :smitten:

[[be...]]

Thanks BG.  :smitten:

[[NJ...]]

This post is for all that are suffering so much, please know that my heart goes out to each and everyone of you, if I could make it better I would. I know that each one of you struggling so much, keeps trying to find the soft spot, and it eludes you, I wish i knew, if I did I would be sending you all the remedy. I do believe in long holds, it has helped me so much this time, and this is going to be the last time I wage this battle. But sadly it does not work for everyone, I do not know why, some are more sensitive, is there too much lag time between the time one decides to hold...I read each post everyday and I cry with you, it breaks my heart. I try not to post much here, as I am doing well, and I know you all are happy, but I do not want to rub it in, so to speak, but all please know I am by your side and I will not leave, and Yes I have Hope for each one of you, please never give up or give in to the thoughts, just when it gets the darkest things may change.

 

I sometimes wonder if being on the meds during a hold may be working against those that are having such a time, but then if you taper, you get hit...I just do not know...but I do think and I will go to my death thinking that no one suffers forever. You may sometimes feel no one is listening or understand...but I do, because I was there twice and I do not know what I did other than, just get really mad at all of the problems and said no more...and decided to stay on the Valium forever...well after a bit, I knew that I could not be a prisoner to Valium and asides the FDA could decide to not make it anymore..so I am trying one more time. Please remember that I am Praying for each and everyone of you and many that are reading silently here, are beside you too, Please remember we will not let you go down the rabbit hole. 💖 Peace and Healing to All.

 

Thank you. I have been crying for a good hour, telling my husband I feel like I am in the rabbit hole and cannot find a way out. Appreciate your thoughts today.

[[In...]]

Count me in this feeling also. I’m very worried myself. And I often feel hopeless.

 

And I’m not sure about long holds either. All these switches from Actavis K to Sandoz K to Actavis K to Sandoz K have truly affected my mind. I told my daughter yesterday that I have agoraphobia and monophobia. She was confused by that. Didn’t understand monophobia. I explained I was often reluctant to leave house and also wary of being alone.

 

I just need to get off this stuff I keep telling myself. Yesterday also, a fellow BB whom I’ve know for a very long time sent me a pm saying Sandoz doesn’t make Ativan anymore. More worries now about all these drug companies.

 

We must have a drug available to taper off of it.

[[Su...]]

G'morning all,

Stut, Mary, Cant, BG, Heath, NJ, Free, and anyone else who I've missed.

 

It's so hard to think of you having such a rough time of it NJ especially with working full time, starting not one but two new jobs etc etc.  I'm very sorry that the CBD isn't helping much and things are so dire.  I sometimes think that one of the things that benzos did to us is so blunt our feelings that they roar to the surface when they have the opportunity.  The four hours of grief that you spoke pf NJ..... and yes you do have things to grieve...

 

And this weird road of "hold / don't hold"  S.O.B.!!  (And I don't mean shortness of breath) what this shit has done to us and continues to do with no road map other than our own awareness as to our own bodies...  It simply sucks!

 

Heath so glad that the cut has worked out for you.

 

I think I don't do well with transitions.  It's tricky when I come back to town, think of all the responsibilities that I have put aside for the summer, get down on myself etc etc.  And then the day rolls out and I simply get with doing things... or that's the plan!

 

BG's words never fail to cheer me, and get my chin down to trudge on again in whatever fashion the day calls for.  Thanks BG for always being the voice of heartfelt courage....

 

:smitten:

SS

[[be...]]

I just wish we had the magic wand for everyone, so unfair, but we mustn't ever give up. 💖 Peace and Healing to All.

[[...]]

oh NJ, Free,Intend,  I'm so sorry you feel as I do , hopeless and unable to see our way forwards.

 

I'm crying too , both for all the suffering and for the words of comfort and love from our friends here.

 

Begood, you are a such good soul , thank you for everything.

 

for myself , I do feel that the drugs themselves are hindering my healing and that is why holding is such a conundrum.  The side effects I get are so debilitating, and I have experienced this over and over , so that my nervous system never gets a chance to stabilize to enable a safe and slow taper down. What I find is that , I do feel a little better when I hold after my tiny microtapers, the wds are horrible, but I never get  to a place where I feel even vaguely well or am able to function.

I think my nervous system is just really struggling , both with the doses of meds, and then with any kind of reduction that adds insult to injury. I asked Baylissa about this, and she said ,' well, you can't just stop , so you do what you can when you can , and one day it will be over.'

So that is all we can do really, our best and keep moving forwards however slowly.

 

My belief is that when I am on a lower dose things may get a lot easier and long holds may even be very beneficial then . It's just HOW to get there from here ? I'm tempted to see if there are any other meds that might help , but that's a slippery slope  .

I have a psychiatrist now and , although I know so much more than he does about benzos , he is trying to help me.  I cam;t trust him though , even though he means well. He just has NO idea of the potential suffering these and any other psyche meds can cause.

 

THank you for being there Begood, I pray that I , and others too who are having such a rough time ,will find  our way, and meanwhile we must take it one day at a time,

 

much love, MiYu

 

[[fr...]]

MiYu, hugs to you.  My doc wants me to try lyrical and I am terrified but just can’t keep going on like this.  I am so conflicted but he feels it might help with the burning neuropathy and also pain in general.  Who knows..  prayers for all. 

[[...]]

MiYu, hugs to you.  My doc wants me to try lyrical and I am terrified but just can’t keep going on like this.  I am so conflicted but he feels it might help with the burning neuropathy and also pain in general.  Who knows..  prayers for all. 

THank you Free.... honestly , if I were you I would give the lyrica a try , in your shoes, I would try a tiny dose and see how you respond.  I still take some gabapentin and it does help a little. SOmetimes  I take extra on a really bad day . there are times when we just need some relief emotionally in order to keep going, that's my humble point of view anyway .

my attitude with other eds at this point is- I'll try something , but in a really tiny dose, to see how I respond. Like the mirtazapine, it actually did help me a little for a while , I only took 1 mg , that's all I needed! but over time it gave me terrible restless legs because of the antihistamine, so I had to stop even that small dose. I had no noticeable wds from it.

 

I think if something makes us feel a little better, it can actually aid our healing. Like the poor woman who I think was on benzos 50 years. She had a terrible time her first taper and was very very ill once off. She was so bad that she reinstated and remeron was added, and she tapered off with NO wds..... so you see, anything is possible!

 

I understand your fear, it is a crap shoot as they say ,for sure, so your fear is healthy.  I am now approaching other possible supportive meds , but with great caution.

 

Big hugs Free, we will be free one day , as your name invokes

love, MiYu

 

 

 

[[fr...]]

Yes, he said just 50 mg at night to start and then one in morning and one at bedtime if it helped.  Gabapentin never helped me.  I need to get past the fear and try but just hate to add yet another med.  You know how it is .  Glad the gaba helps you.  Need to get out of this pain, I am nonfunctional and that’s no way to live. 

[[NJ...]]

I agree with Miyu to try a small amount.

 

If there was a drug I could take for the nausea I would. Nothing works well except compazine and I cannot take that and then drive a car and work. Remeron helped for a long time and I may try to bump up my dose to see if it helps. My psychiatrist wanted me on 30 mg but I have stayed at 15 mg. Will try another medical marijuana strain but that is now four weeks away, that is the quickest appt. I could get.

 

I don't know what to do anymore. I am terrified I am going to end up not being able to continue to work. I don't think many of you do work actually ... now that I think of it, not too many people mention this as a part of their lives. I know Bob works, but he is tapering actively and doing very well, so happy for him. I am married but with college age kids not sure how to even cut back, have thought about going back to part time but not sure. Work is also a good distraction for me ... weekends are tough. With this nausea, though, I am just at a loss. Wondering if after two years of tapering if a reinstatement to original dose might work. I hate to throw this all away but I am really starting to get so depressed and I truly am in mourning for what were all the good times in my life, when I was mostly on klonopin. I do not feel like the same person.

 

And I, like the others on K, now have to switch to a new formulation as I can no longer get the Teva. Hoping to get the brand name and hoping this will not be a disaster, the switch. I am such a mess already, very concerned about changing but no choice.

[[be...]]

oh NJ, Free,Intend,  I'm so sorry you feel as I do , hopeless and unable to see our way forwards.

 

I'm crying too , both for all the suffering and for the words of comfort and love from our friends here.

 

Begood, you are a such good soul , thank you for everything.

 

for myself , I do feel that the drugs themselves are hindering my healing and that is why holding is such a conundrum.  The side effects I get are so debilitating, and I have experienced this over and over , so that my nervous system never gets a chance to stabilize to enable a safe and slow taper down. What I find is that , I do feel a little better when I hold after my tiny microtapers, the wds are horrible, but I never get  to a place where I feel even vaguely well or am able to function.

I think my nervous system is just really struggling , both with the doses of meds, and then with any kind of reduction that adds insult to injury. I asked Baylissa about this, and she said ,' well, you can't just stop , so you do what you can when you can , and one day it will be over.'

So that is all we can do really, our best and keep moving forwards however slowly.

 

My belief is that when I am on a lower dose things may get a lot easier and long holds may even be very beneficial then . It's just HOW to get there from here ? I'm tempted to see if there are any other meds that might help , but that's a slippery slope  .

I have a psychiatrist now and , although I know so much more than he does about benzos , he is trying to help me.  I cam;t trust him though , even though he means well. He just has NO idea of the potential suffering these and any other psyche meds can cause.

 

THank you for being there Begood, I pray that I , and others too who are having such a rough time ,will find  our way, and meanwhile we must take it one day at a time,

 

much love, MiYu

I am always here on the sidelines, reading and thinking of all. I think Baylissa is right, just to keep on trying, not giving up, sad that now you know just what to expect, but I keep thinking of the window you had, if it came once, it will come again. Just do what you can when you can, wish I could offer more to you and others struggling.