The Long Hold Support Group

[[Sh...]]

Time for another hold for me. 

Guess I'm just supposed to wait for symptoms to settle down to manageable again. This is new territory for me. Did my long hold. Tapered away about 7%. Heading in a bad direction. Do not want to end up where I was before my long hold!

 

This is why I chose to just grit my teeth and taper off the last 2mg 3 weeks at a time per cut. I never stabilised, but I much preferred to do that and get off the poison than to do a long hold, then taper a bit, then do another long hold etc etc. That would have driven me mad and feel like I'm never gonna make it off. And it's good to know that at 0, when I eventually do come good it's for the last time and there's no more tapering.

 

But it's good that this method is working for you.

Yes indeed whatever works for us, all are so different how we are willing to deal with our taper and results, but in the end, we will be all Free, some just sooner than others. Once again Shamo I asked how you are doing?, have been thinking of you and knowing you had a rough time, hope things are better for you.

 

Hey BeGood. I was doing it really really tough. I'm just coming up on 7 months clean. Last month I tried a med called Lyrica and it has been a godsend. Makes me feel so much better and pretty much gets rid of all my mental symptoms. If I take it on a sunday, I feel a bit out of it but feel better, and then feel really good on monday. By tuesday I'm starting to feel shit again but I try and hang on until wednesday. I dont want to get hooked on another med so I'm taking it every 3 days atm. I know many people take it every day but I've heard the lyrica wd can be pretty bad too. How are you?

[[be...]]

Time for another hold for me. 

Guess I'm just supposed to wait for symptoms to settle down to manageable again. This is new territory for me. Did my long hold. Tapered away about 7%. Heading in a bad direction. Do not want to end up where I was before my long hold!

 

This is why I chose to just grit my teeth and taper off the last 2mg 3 weeks at a time per cut. I never stabilised, but I much preferred to do that and get off the poison than to do a long hold, then taper a bit, then do another long hold etc etc. That would have driven me mad and feel like I'm never gonna make it off. And it's good to know that at 0, when I eventually do come good it's for the last time and there's no more tapering.

 

But it's good that this method is working for you.

Yes indeed whatever works for us, all are so different how we are willing to deal with our taper and results, but in the end, we will be all Free, some just sooner than others. Once again Shamo I asked how you are doing?, have been thinking of you and knowing you had a rough time, hope things are better for you.

 

Hey BeGood. I was doing it really really tough. I'm just coming up on 7 months clean. Last month I tried a med called Lyrica and it has been a godsend. Makes me feel so much better and pretty much gets rid of all my mental symptoms. If I take it on a sunday, I feel a bit out of it but feel better, and then feel really good on monday. By tuesday I'm starting to feel shit again but I try and hang on until wednesday. I dont want to get hooked on another med so I'm taking it every 3 days atm. I know many people take it every day but I've heard the lyrica wd can be pretty bad too. How are you?

Hey 7 months off is great, but I know it has not been easy, but that 7 months is gone forever thank goodness, good that you have found something to help, you are wise to be wary and careful. I know some buddies here that it takes months to really get to a good place, I think it is the trauma to our Brain from the benzo's and that all the wires need to heal and reboot in our Brain, but hoping that you are lucky, and it will not take forever, but one step at a time. I am doing well, still some blips at times, but all in all can not say anything bad is going on, I have chosen a very slow turtle walk, but it is the only way I feel for me that I will succeed. You will be Ok, it just takes time, and I am glad you did not reinstate.

[[He...]]

Hello everyone. 

Yes V, I'll sure let you know if I find a remedy for the foot cramps. It doesn't look too promising though! 

I'm feeling crappy. Intermittent cramps in feet, neck ache which I thought was on it's way out, is back, muscle aches keep moving around from pressure point area in back of shoulders to neck and back again, feeling a bit light headed and with a headache.  Not sleeping well for past three nights. Time to take a 1/4 of a remeron. Nothing s "oh my gosh MAJOR HORRIBLE" but just enough to mess me up.

I don't normally get so many wd sxs at once. Is this what they call the benzo flu?

 

My old school asked me to help with some curriculum . I said ok, but now it has turned into something much bigger than what I had anticipated. I can't back out now. I am supposed to be a part of a presentation next Wednesday. Maybe the anxiety about that is what's causing all these wd sxs. Well at least it will be over next Wednesday.  I really have to learn to say NO to people when they ask me to do something I really don't want to do, or that I am really not up to doing  because of my benzo brain.  But up at school no one knows about my benzo problems. I'm afraid they won't understand. I only tell my closest friends about my benzos, and even now I don't talk about it much at all. No one wants to hear it, although I know they care. I just keep my benzo stuff to myself. I don't want to jeopardize the subbing work the school will give me when I am ready to get back to work. And tutoring help for needy students, and even some part time work.

 

Thank goodness I have this place to vent all my woes without judgement.

 

Well I've made another tiny cut and I'm down to 1.14 mg. Now im going to hold another month and see what happens maybe hold longer.

 

I am thinking and hoping that these wd sxs are just the many blips Begood  talks about ,and that they are to be expected with any cut. The thing is, I hope that's what it is, and it's not going to turn into major incapacitating wds.

. A relative is coming next month for a visit. I have to be ok for that.

 

I hope everyone is feeling better today.

 

MIYU, although you are not getting much relief , you do sound better than you did a few months ago. I am glad you were able to get out with a friend. That is a good sign. I agree with you about hating to go visit the dentist, but I think V is right. The anticipation is really worse than the actual visit.

 

MIYU, I too am going very slow. My cuts are 2 tenths of one twentith of a mg. ( I think that's how it is?)

I just went from 1.16 to 1.14.  It's like no cut at all!! Yet I do get at least some wd with each cut. I think I'll be off, at this rate, in two years!

Que sera sera!

 

Take care and wishing everyone peace and healing.

 

Heath

[[be...]]

Hey MiYu, Heath and all others that are having struggles, hang on, come here and keep letting us know how you are doing. Now I would like to clarify a couple of things, Firstly I have been doing this hold thing for a very long time, and did it for a long time before ever coming here. the point I want to make, is that my sx are very different from those of you that have been holding, I wish I could say the exact date but trust me a long time, two failed tapers and reinstatements and then holding and then starting a taper with the knowledge that I was going to do it my way, slow......

 

Since I coined the phase "blips and blippy" I want to explain, why I chose this word, because yes I have times when things show up the left side weakness, jelly legs, my legs not wanting to move when walking, some paps, the dizzies, but never sure if from benzo's or my ear disease, sadness, anger, fatigue, sleep problems, benzo belly, lack of motivation, neck stiffness, seems like a lot, but the thing is they are so mild and some just last for a brief time, and just go away, seems I have to go through the cycle more when my taper schedule is finished, and then I start feeling really good, now I know many have some of these things, but with me, they are not anything like we hear about here, so that is why I chose the word blips, does not seem right to let others think I am struggling alot, it is something I can handle, and do.

 

I guess what I am trying to say, is that I am unique in the sense, I have been holding for a lot longer than anyone here, and I think the difference in my sx, will always be different than what you are going through, most in the scheme of things are still in your little trainer high top baby shoes, I know that 2-3 months or even a month seems like a mighty long time and it is to you, but for me it is not, I know that the reason I am doing well is because I have been at this for years, and although I did not know then, my Brain has been healing slowly and most of the time I hate to even say how I feel, because someone on this thread once said they were jealous of me, that hurt a lot, as I had suffered horribly twice before I changed the way of thinking and just said I do not care if it takes the rest of my life, I just do not care so please know I will be here for a long time to come and I will support each one of you, but my taper is very different than most, and yes I am blessed to have not had a really bad time, could that change, sure if I push ahead, and been there and done that and it is not worth it, and yes I had uptick of my blips, but still nothing like most are feeling.

 

 

[[fr...]]

  Thanks BG,  You and Valley and Lynn and the others give us such hope that things can turn around for us also.  If I need help I will post but just don't much because it is scary to others to hear the horror stories.  I know some things I don't want to read either.  You all are our mentors and are showing us the way.  I know we can depend on you to be here for us and I'm so honored to call you friend.  HOw anyone could state they are jealous of someone else feeling good is mean but they probably didn't mean it like that.  Sure, those of us who suffer wish we could do as well as you all but I think jealous is the wrong word.  I am so happy for you all but deep down somewhere it is just human to be sad that why can't it be me who feels good, just for one day.  Maybe they meant it that way.  Don't you give it another thought, you are so tender hearted.  People will be mean sometimes but I think 99% love you all here and are so happy for you like I am.  Keep up cheering us all on, we need the hope.  :smitten:

[[be...]]

  Thanks BG,  You and Valley and Lynn and the others give us such hope that things can turn around for us also.  If I need help I will post but just don't much because it is scary to others to hear the horror stories.  I know some things I don't want to read either.  You all are our mentors and are showing us the way.  I know we can depend on you to be here for us and I'm so honored to call you friend.  HOw anyone could state they are jealous of someone else feeling good is mean but they probably didn't mean it like that.  Sure, those of us who suffer wish we could do as well as you all but I think jealous is the wrong word.  I am so happy for you all but deep down somewhere it is just human to be sad that why can't it be me who feels good, just for one day.  Maybe they meant it that way.  Don't you give it another thought, you are so tender hearted.  People will be mean sometimes but I think 99% love you all here and are so happy for you like I am.  Keep up cheering us all on, we need the hope.  :smitten:

Thanks Free, you are right, I really do not think the person meant it, but you know sometimes it is not a good day and then something is said and things can go in the potty, I just love it when you post. You know we are always going to be here for you. Oh jp showed up hungry, and ready to go, too late.... but Valley was working I guess. Thanks Free it means a lot that you are here with us Girlz and Boyz,  forgot this is not my blog.

[[fr...]]

  Yes, I saw he showed up but too late, we ate up all the food anyway.  It was yummy and he sure missed out.  Next time JP. 

[[ly...]]

 

 

Free, we are all very hopeful for you and so glad that you are getting a chance to try something that may turn things around.

 

Yep, the boyz missed the boat...er, plane!

[[...]]

 

 

MiYu,

 

I have a buddy that has had an awful time with the cross to V and is going back to A.  It will be interesting to see how this goes.  Sometimes I wonder if it's the brain's reaction to a particular benzo.  This is what's so darn hard about these drugs.  There are never set answers.  No one method that "works" for everyone.  Not even a "try this, then try this, then try this" protocol.  It seems Ashton is the only guide - except the mish-mash of trial and error that we read about here.  I don't know if there is a Support Group for those having a problem finding a med to taper from where people can hear specifically of results crossing, crossing back or crossing over to an entirely different benzo.  All trial and error but maybe more targeted to those have issues with a specific benzo.  Sigh.

 

A buddy having serious issues tapering from K (I think) has finally reached BAT for advice.  I hope we hear details of the advice given and the results.  This was another case of a cross that doesn't seem like a good one.  It would be nice to have a set standard such as "give the V (or whatever) a month and go back/try something else if things are bad".  Who knows.  I wish there were answers.

 

Hoping you start seeing more consistent improvement. :smitten:

 

Thanks Lynn..... Oh I don't know what to do, it's like you say, there's no way to know way to know how any of this will go , it's all trial and error for each person .

I get scared like everyone, I just had such high hopes for the Valium taper and it hasn't turned out the way I hoped. The cross over was horrific for me . I don't think I ever felt well on any benzo, perhaps Ativan was the best in terms of how I responded to it . Nothing is an easy taper as we know, for us here anyway.

I had a dental appointment today and was in a wheelchair , I couldn't walk , it was awful. I'm so tired of being home alone and dealing with the hell each day.

I have a consultation with my doctor on the 18 th.... I know he prefers Valium for tapering. I think there's a genetic test you can get that will tell you how you do with certain drugs, I'm hoping he can get it for me.

MiYu

 

Ps , if you can keep us posted on how your buddy does that would be great 

[[be...]]

MiYu, I am so sorry you are having such a hard time, nothing about benzo's are easy for sure, and I know you would be happy to feel functional.

 

I believe in long holds as you know, but I also know that when one holds after going through a rough time it seems to take forever and really it does take a longer time than is reasonable for most, I will be thinking of you and please know that we are all here for you, and who knows what tomorrow will bring.

[[...]]

Hey MiYu, Heath and all others that are having struggles, hang on, come here and keep letting us know how you are doing. Now I would like to clarify a couple of things, Firstly I have been doing this hold thing for a very long time, and did it for a long time before ever coming here. the point I want to make, is that my sx are very different from those of you that have been holding, I wish I could say the exact date but trust me a long time, two failed tapers and reinstatements and then holding and then starting a taper with the knowledge that I was going to do it my way, slow......

 

Since I coined the phase "blips and blippy" I want to explain, why I chose this word, because yes I have times when things show up the left side weakness, jelly legs, my legs not wanting to move when walking, some paps, the dizzies, but never sure if from benzo's or my ear disease, sadness, anger, fatigue, sleep problems, benzo belly, lack of motivation, neck stiffness, seems like a lot, but the thing is they are so mild and some just last for a brief time, and just go away, seems I have to go through the cycle more when my taper schedule is finished, and then I start feeling really good, now I know many have some of these things, but with me, they are not anything like we hear about here, so that is why I chose the word blips, does not seem right to let others think I am struggling alot, it is something I can handle, and do.

 

I guess what I am trying to say, is that I am unique in the sense, I have been holding for a lot longer than anyone here, and I think the difference in my sx, will always be different than what you are going through, most in the scheme of things are still in your little trainer high top baby shoes, I know that 2-3 months or even a month seems like a mighty long time and it is to you, but for me it is not, I know that the reason I am doing well is because I have been at this for years, and although I did not know then, my Brain has been healing slowly and most of the time I hate to even say how I feel, because someone on this thread once said they were jealous of me, that hurt a lot, as I had suffered horribly twice before I changed the way of thinking and just said I do not care if it takes the rest of my life, I just do not care so please know I will be here for a long time to come and I will support each one of you, but my taper is very different than most, and yes I am blessed to have not had a really bad time, could that change, sure if I push ahead, and been there and done that and it is not worth it, and yes I had uptick of my blips, but still nothing like most are feeling.

 

Hi Begood 

So , I'm not clear, are you saying that you never had really intense symptoms ? Or that you did and that's why you reinstated? And how long have you had to do holds for? Like how many months? If you feel like sharing a few more details of your journey I'd love to hear , only if you want to.

 

I'm trying to do it my way, and have the freedom to , but as I posted to Lynn , I'm really tired of the intensity of symptoms when I have tried to go soooo slow, and holding . But I get that you are saying a few months is nothing for a hold. But I don't see many people who have such a hard time so early on in their taper, that's what scares me, that it could be like this for me the whole time.

 

Also , I'm still not clear from your sig , did you really cut 2-1/2mg  in a month when you first started your 3 Rd taper?

 

I know I've felt envious of those who have an easier time.... I hope I haven't hurt you ever , it would never be my intention ..... I guess you must have been through hell yourself and I'm happy for you that you are doing so much better .

 

Love and hugs , MiYu 

[[...]]

MiYu, I am so sorry you are having such a hard time, nothing about benzo's are easy for sure, and I know you would be happy to feel functional.

 

I believe in long holds as you know, but I also know that when one holds after going through a rough time it seems to take forever and really it does take a longer time than is reasonable for most, I will be thinking of you and please know that we are all here for you, and who knows what tomorrow will bring.

 

You sweetheart  you posted this while I was writing mine 

[[be...]]

MiYu, it was not anyone that is now with us, this was in the beginning long ago, it was said.

 

Oh heavens yes I had intense sx's the first two tapers and because I was told that I was close to having an impending stroke is why I reinstated. Yep the first two tapers were pure hell. I can not tell you how long I held but it was for a while then I finally decided to try one more time, because I felt stable.

 

My second reinstatement was to 5mg, and you know I thought I was wrong also about the 2.50mg but after looking at my sig and really thinking about it, yes I did, I dropped that amount and told myself if I had problems I would go back to 5mg, well just slight blips really started then, very minor, and I thought well this is not bad, so just stayed on 2.50mg for a long while and then when I restarted I would cut .25mg at a time and hold for a long time, I am sorry but I just can not remember how long, but I do believe that all the long times I held made this doable for me this time, and yes just minor blips. Also the first reinstatement, my Doctor wanted me to go from 10mg, to 5mg overnight and did OK. My real hell did not hit either time, until I was off completely off the two different times, I was having a hard time getting there, but it hit me full force.

[[de...]]

MiYu, it was not anyone that is now with us, this was in the beginning long ago, it was said.

 

Oh heavens yes I had intense sx's the first two tapers and because I was told that I was close to having an impending stroke is why I reinstated. Yep the first two tapers were pure hell. I can not tell you how long I held but it was for a while then I finally decided to try one more time, because I felt stable.

 

My second reinstatement was to 5mg, and you know I thought I was wrong also about the 2.50mg but after looking at my sig and really thinking about it, yes I did, I dropped that amount and told myself if I had problems I would go back to 5mg, well just slight blips really started then, very minor, and I thought well this is not bad, so just stayed on 2.50mg for a long while and then when I restarted I would cut .25mg at a time and hold for a long time, I am sorry but I just can not remember how long, but I do believe that all the long times I held made this doable for me this time, and yes just minor blips. Also the first reinstatement, my Doctor wanted me to go from 10mg, to 5mg overnight and did OK. My real hell did not hit either time, until I was off completely off the two different times, I was having a hard time getting there, but it hit me full force.

 

 

hi

i see where you reinstated..and i am not off of my klonopin but could you please read my post from yesterday...i would love your opinion as i go to my doc tomorrow and was looking for someone who had either reinstated or updosed to where they were when they started and if it was a success the 2nd time around..i am thinking abot updosing back to my 4mgs and try to get my life back but most are telling me it could be horrible for me..

 

thanks

 

deep

[[de...]]

hey everyone,

 

i guess you older members who knew me think i fell off the earth...well i feel like i have..i dont read much of anything anymore and try to stay away from groups so i dont get any worse from reading..

 

I have been in a wheelchair since july 4th..and i have been holding now since last april an i am not stabalizing i need some input..

 

i am up to 115lbs from 97 but its been a long road and i am just so tired..i am weak and have no energy and as for the eyes i dont drive anymore...terrie helps me get a shower and dress and she does everything around here as i am no longer able too.

 

I need your input i go to my doc on thursday and we had agreed that something has to change cause things are just not getting better..and i told him if i could go back to my 4mgs of k that i had been on for 30 something yrs and stabalize and then i would try again even if it took me 10 yrs..

 

my question is cause he listens to my suggestions and what i want to do..being at 2.75mgs now.. you all know i got to 1.75 but then had to updose twice..but now with the long hold i dont see it getting any better..

 

can i go back to 4mgs at one time to try and see if i can pull out of this? or is that something you do slowly also?

and what are the chances that it will back fire on me cause just staying here is not helping and i take no other meds. he doesnt want me to drop any lower cause my body is just shutting down from it.and he wanted me to wait until after the holidays so i at least might not get any worse...and i have had all kinds of tests run and they find nothing. also switching to v is not an option.

 

i will check back tomorrow and also on thursday morning to see if i can get any help from here on what to do..or any suggestions..just please dont tell me to keep holding cause i am just not getting any better and it will be a yr soon..

 

i miss all of you and have thought of you all often but reading things to do with this makes me worse and the eyes dont work well enough to do alot of reading.

 

hugs to all of you

 

 

deep

Hi deep!  It's so good to hear from you! I have wondered what happened to you and I am glad you are finally getting a plan in place and that your weight has gone up.

 

Concerning the dose correction, it's probably best to listen to your body just as in a taper. My experience has been to feel worse initially so if you feel an increase in sxs it's just your body readjusting again. I do know the BAT philosophy is to updose high enough to stop sxs so you may need to go to 4mg to get stable. Whether to do it all at once is anyone's guess. You may just want to jump up to 4mg and reevaluate in a week.

 

I'm so sorry you're wheelchair bound and hope things turn around for you soon. Anecdotally, from reading many posts regarding K, it seems K is the least responsive to holding for long periods of time. I'm not sure why but can only guess it's the unique properties of K involving serotonin. I believe it's the only benzo to directly effect serotonin.

 

We've missed you! Hope to see you here when you feel up to it.  --V

 

 

hi v

 

it was great to hear from you

 

and everyone is basically against me going back up to te 4mgs but i dont see any way out of this but i am also afraid to do anything but just cant sit here and let me life just go by..i was so active but i have been sick a yr now and holding since april and have gotten worse...so i dont see that holding longer would help and i cant even stand the thought of trying to get lower at this time so i dont know what to suggest to the doctor tomorrow..valium is not an option..my body is so use to k..and now i have been told that with the half life being so long why am i dosing 4 times a day cause if you divide the 2.75 by 4 times a day its just a small amount of powder that i am putting into the broth to take..i just miss food so much ..pizza, salads, just everything..my diet is the same everyday but I am grateful that i can swallow some things now.

 

hope you are healing and hope to hear some more input from you before i go to the doctor tomorrow

take care

 

hugs

deep

[[be...]]

Deep, I had no trouble both times I restarted and am glad that I did, because I was able to stabilize, but it took a long time, that I have been doing this, now on third taper and it is like night and day, it is your decision, I just knew that I had to not have a stroke and this was way before I even came here, I had only myself to figure it out, no other thoughts, just my own. I trust that you will do what is best for you. Get your life back and get strong and if you want to try again a long time down the line so be it, and just always remember that holds do work, and it looks like you just want a life and we all deserve that. Best to you.

[[an...]]

hey everyone,

 

i guess you older members who knew me think i fell off the earth...well i feel like i have..i dont read much of anything anymore and try to stay away from groups so i dont get any worse from reading..

 

I have been in a wheelchair since july 4th..and i have been holding now since last april an i am not stabalizing i need some input..

 

i am up to 115lbs from 97 but its been a long road and i am just so tired..i am weak and have no energy and as for the eyes i dont drive anymore...terrie helps me get a shower and dress and she does everything around here as i am no longer able too.

 

I need your input i go to my doc on thursday and we had agreed that something has to change cause things are just not getting better..and i told him if i could go back to my 4mgs of k that i had been on for 30 something yrs and stabalize and then i would try again even if it took me 10 yrs..

 

my question is cause he listens to my suggestions and what i want to do..being at 2.75mgs now.. you all know i got to 1.75 but then had to updose twice..but now with the long hold i dont see it getting any better..

 

can i go back to 4mgs at one time to try and see if i can pull out of this? or is that something you do slowly also?

and what are the chances that it will back fire on me cause just staying here is not helping and i take no other meds. he doesnt want me to drop any lower cause my body is just shutting down from it.and he wanted me to wait until after the holidays so i at least might not get any worse...and i have had all kinds of tests run and they find nothing. also switching to v is not an option.

 

i will check back tomorrow and also on thursday morning to see if i can get any help from here on what to do..or any suggestions..just please dont tell me to keep holding cause i am just not getting any better and it will be a yr soon..

 

i miss all of you and have thought of you all often but reading things to do with this makes me worse and the eyes dont work well enough to do alot of reading.

 

hugs to all of you

 

 

deep

Hi deep!  It's so good to hear from you! I have wondered what happened to you and I am glad you are finally getting a plan in place and that your weight has gone up.

 

Concerning the dose correction, it's probably best to listen to your body just as in a taper. My experience has been to feel worse initially so if you feel an increase in sxs it's just your body readjusting again. I do know the BAT philosophy is to updose high enough to stop sxs so you may need to go to 4mg to get stable. Whether to do it all at once is anyone's guess. You may just want to jump up to 4mg and reevaluate in a week.

 

I'm so sorry you're wheelchair bound and hope things turn around for you soon. Anecdotally, from reading many posts regarding K, it seems K is the least responsive to holding for long periods of time. I'm not sure why but can only guess it's the unique properties of K involving serotonin. I believe it's the only benzo to directly effect serotonin.

 

We've missed you! Hope to see you here when you feel up to it.  --V

 

 

hi v

 

it was great to hear from you

 

and everyone is basically against me going back up to te 4mgs but i dont see any way out of this but i am also afraid to do anything but just cant sit here and let me life just go by..i was so active but i have been sick a yr now and holding since april and have gotten worse...so i dont see that holding longer would help and i cant even stand the thought of trying to get lower at this time so i dont know what to suggest to the doctor tomorrow..valium is not an option..my body is so use to k..and now i have been told that with the half life being so long why am i dosing 4 times a day cause if you divide the 2.75 by 4 times a day its just a small amount of powder that i am putting into the broth to take..i just miss food so much ..pizza, salads, just everything..my diet is the same everyday but I am grateful that i can swallow some things now.

 

hope you are healing and hope to hear some more input from you before i go to the doctor tomorrow

take care

 

hugs

deep

 

Hi Deep,

 

I am so sorry you are still going through such a terrible time.  I am glad to hear you have gained some weight though, but I agree that something has to change.  I understand that most here advise not to go back to your previous dosage.  At the same time, the hold has not helped, and you are experiencing some very serious issues and have gotten worse over the last year.

 

Have you tried increasing your dose back to 4 mg?  I don't know for sure (I am on ativan and it has a shorter half-life than K) but I assume you would know within a few days if the reinstatement would help.  If you see an improvement you know that you are on the right track.  If not, I assume you could then drop  back down to where you are now without having to taper off the higher amount.  Just some thoughts.  Maybe someone else will chime in.

 

I hope you find some relief soon.

 

((Hugs))

 

Anne xoxox

[[Va...]]

Deep, I had no trouble both times I restarted and am glad that I did, because I was able to stabilize, but it took a long time, that I have been doing this, now on third taper and it is like night and day, it is your decision, I just knew that I had to not have a stroke and this was way before I even came here, I had only myself to figure it out, no other thoughts, just my own. I trust that you will do what is best for you. Get your life back and get strong and if you want to try again a long time down the line so be it, and just always remember that holds do work, and it looks like you just want a life and we all deserve that. Best to you.

I couldn't have said it any better. BG has the experience to speak from an informed position. 

[[de...]]

Deep, I had no trouble both times I restarted and am glad that I did, because I was able to stabilize, but it took a long time, that I have been doing this, now on third taper and it is like night and day, it is your decision, I just knew that I had to not have a stroke and this was way before I even came here, I had only myself to figure it out, no other thoughts, just my own. I trust that you will do what is best for you. Get your life back and get strong and if you want to try again a long time down the line so be it, and just always remember that holds do work, and it looks like you just want a life and we all deserve that. Best to you.

 

thanks so much for getting back to me..i keep being told these horror stories that are scaring me about updosing from the 2.75 to 4mg where i was for the 30 something yrs a guy on a fb group said i would be putting my health in a horrendous situation..he said he would take the feeding tube before he would risk and updose..and i am wondering and second guessing myself now..what if it harms me if i go back..but my body was use to that dose for 30 something yrs..i sure wish i would have left it alone..i am not saying i never got sick or didnt have some problems every once in  a while i am sure was from the meds but i was functional..and i would know this time going into it what it was when i was having a mental bad day..like not real happy and not sure why not..i have great support here from my family,husband, son and best friend but they know what i was like before i started this journey.

 

but you said it takes a long time to stabalize..i am just afraid it might throw my body crazy if i went up to that amount all at once but then again..i dont think the slow way like 1/4 mg every so often would be good either cause then to me it would seem like it would get use to mentally getting more every so often

 

then i have the people saying what if 4mgs isnt enough this time..well why wouldnt it be it was for 30 something yrs..

sorry i am rambling on..i am just so afraid of dying, having a stroke or heart attack..yes i have phobias about not making it ..

 

thanks again

 

deep

[[de...]]

Hi Deep,

 

I am so sorry you are still going through such a terrible time.  I am glad to hear you have gained some weight though, but I agree that something has to change.  I understand that most here advise not to go back to your previous dosage.  At the same time, the hold has not helped, and you are experiencing some very serious issues and have gotten worse over the last year.

 

Have you tried increasing your dose back to 4 mg?  I don't know for sure (I am on ativan and it has a shorter half-life than K) but I assume you would know within a few days if the reinstatement would help.  If you see an improvement you know that you are on the right track.  If not, I assume you could then drop  back down to where you are now without having to taper off the higher amount.  Just some thoughts.  Maybe someone else will chime in.

 

I hope you find some relief soon.

 

((Hugs))

 

Anne xoxox

 

 

 

Hi Anne

 

thanks for posting to me..and thats what i have tried to get others to understand that holding is not working and i am not getting better but i have received alot of negative posts about going back up and it has scared me..but then i have been scared for a yr now..an ended up in the hospital back in the summer from an svt episode with my heart..i had never been in the hospital in my life except when i had my tonsils out when i was 6 and when i had my kids..i was so scared..my best friend stayed with me and never left..hubby and son came daily and stayed for awhile..but then when i got home i have been in a wheel chair since..i have no strength and so weak i get dizzy and then my heart gets palps and shakes..and i am trying to not have another episode if i can help it ..but was told it was something i was born with.

 

I hadnt thought about could i just go back down again to the 2.75mgs if it didnt work or if i would have to gradually do it..i dont know how long an updose you would have to be on it before it would be to much to go back down 1.25mgs at once of k.

 

thanks for your time and hope you are doing well..well as good as can be expected

 

big hugs to you

 

deep xoxoxox

[[Sh...]]

Time for another hold for me. 

Guess I'm just supposed to wait for symptoms to settle down to manageable again. This is new territory for me. Did my long hold. Tapered away about 7%. Heading in a bad direction. Do not want to end up where I was before my long hold!

 

This is why I chose to just grit my teeth and taper off the last 2mg 3 weeks at a time per cut. I never stabilised, but I much preferred to do that and get off the poison than to do a long hold, then taper a bit, then do another long hold etc etc. That would have driven me mad and feel like I'm never gonna make it off. And it's good to know that at 0, when I eventually do come good it's for the last time and there's no more tapering.

 

But it's good that this method is working for you.

Yes indeed whatever works for us, all are so different how we are willing to deal with our taper and results, but in the end, we will be all Free, some just sooner than others. Once again Shamo I asked how you are doing?, have been thinking of you and knowing you had a rough time, hope things are better for you.

 

Hey BeGood. I was doing it really really tough. I'm just coming up on 7 months clean. Last month I tried a med called Lyrica and it has been a godsend. Makes me feel so much better and pretty much gets rid of all my mental symptoms. If I take it on a sunday, I feel a bit out of it but feel better, and then feel really good on monday. By tuesday I'm starting to feel shit again but I try and hang on until wednesday. I dont want to get hooked on another med so I'm taking it every 3 days atm. I know many people take it every day but I've heard the lyrica wd can be pretty bad too. How are you?

Hey 7 months off is great, but I know it has not been easy, but that 7 months is gone forever thank goodness, good that you have found something to help, you are wise to be wary and careful. I know some buddies here that it takes months to really get to a good place, I think it is the trauma to our Brain from the benzo's and that all the wires need to heal and reboot in our Brain, but hoping that you are lucky, and it will not take forever, but one step at a time. I am doing well, still some blips at times, but all in all can not say anything bad is going on, I have chosen a very slow turtle walk, but it is the only way I feel for me that I will succeed. You will be Ok, it just takes time, and I am glad you did not reinstate.

 

Thanks BG. This really is scary. I just can't believe it takes this long and we just have to suffer through it. I have moments where I really start panicking that I'm stuck in this mess. It's hard to remember what I used to feel like before this.

[[...]]

MiYu, it was not anyone that is now with us, this was in the beginning long ago, it was said.

 

Oh heavens yes I had intense sx's the first two tapers and because I was told that I was close to having an impending stroke is why I reinstated. Yep the first two tapers were pure hell. I can not tell you how long I held but it was for a while then I finally decided to try one more time, because I felt stable.

 

My second reinstatement was to 5mg, and you know I thought I was wrong also about the 2.50mg but after looking at my sig and really thinking about it, yes I did, I dropped that amount and told myself if I had problems I would go back to 5mg, well just slight blips really started then, very minor, and I thought well this is not bad, so just stayed on 2.50mg for a long while and then when I restarted I would cut .25mg at a time and hold for a long time, I am sorry but I just can not remember how long, but I do believe that all the long times I held made this doable for me this time, and yes just minor blips. Also the first reinstatement, my Doctor wanted me to go from 10mg, to 5mg overnight and did OK. My real hell did not hit either time, until I was off completely off the two different times, I was having a hard time getting there, but it hit me full force.

 

Wow , thanks Begood , that's very interesting..... 

I wonder , how much our mental states and beliefs around all this  effect our experience. I'm try to think positively , and maybe that can be part of the value of long holds, to get stable , feel more positive about succeeding, and then having better results..... I do think it plays a part.....

Anyone else have thoughts on this? 

[[Da...]]

I feel for you. I am dealing with pelvic floor dysfunction, not just with endometriosis pain at time of month. The PFD is really disabling and I am doing very specific stretches to try and help. Sometimes it does, sometimes not. Today is a good day.

 

That's the worst, I'm sorry you're having to deal with that too. I've not had it but my S/O has due to his spinal condition. Not the same as for us girls of course, but it's horrible all the same. He also has to deal with electric shocks in his groin area too. I'm getting these too and intense burning in my veejay, TMI I know lol 

 

I can predict the start of my period flow with great accuracy now lol, as my innards start 'boiling' and my inner vibrations move and focus entirely on my pelvic region. The rest of my body seems to calm down with this one at period time, but it feels as if I have a basketball filled with boiling water in my lower abdomen area.  That's how I tried to describe it to S/O last night lol. I also get a lot of nausea, back pain, flushing (feels like I'm having an early menopause tbh), feel very, very weak and even more exhausted and lethargic than my new normal and my flow is extremely heavy now. My Benzo dizziness has all but gone most of the time now, but the dizzy/faint/disoriented spells that plagued me at period time even before Benzos ever made an appearance are so much more intense now thanks to Benzos and WD. I get these 'attacks' on and off on the heaviest days of my cycle. I try and mitigate it by making sure not to stand up too fast, bend down or move around too much at period time because these things can bring it on.

 

I am due any time now, so I will be having tons of fun very soon. I am in a bad way at the moment and I am blaming my period for some of it. I would get very down and cry over nothing at this time before Benzos, so I am guessing it's where all this month's tears are coming from, heh. Nobody gets WD, nevermind those of us who have pre-existing issues that are not so much a WD symptom, but are made so much worse BY WD. For me this is a big one. Another thing that's scaring me is I know I am going to faint/collapse from this period issue sooner or later, as I've come so close on many occasions even before WD, but now everything is a million times worse.

 

Sorry for the whinge.

[[He...]]

Dear Begood

I don't know your real name. I don't know who you are. All I know is that you are one of the kindest, thoughtful ,sincere people I have ever corresponded with, even if I don't know who you are.

I also know that at one time about 8 months ago, I wrote that I was jealous of the fact that you were so low in your dose. I didn't think I would ever get down that low. ( I still wonder when it will happen)

Right now I am feeling embarrassed and ashamed.

When I wrote I was jealous, I meant no harm. I was feeling amazed at what you had done so far in your taper and just wished I was at that place too. I did not mean In any way to wish you any harm or to hurt your feelings in any way. I wonder now after all these months, how much I had hurt you unintentionally and did not even realize it until I read your post today. I am absolutely mortified. I am not a mean person. I am so very very sorry if I came across that way.

I really hope you can forgive me and accept my sincere apology. I always thought that being jealous meant that you thought someone was in such a good way, had accomplished something great  etc, that you wished you could be like them. But not that you wished them any harm. I guess I used the wrong word. Next time I will explain myself further instead of using the word jealous.

I am sooo very very sorry. I wouldn't hurt you for the world. You have been such a kind and caring and helpful support to me. And I wish you only the best.

As I said, I am feeling embarrassed and ashamed, but I am glad you posted that, because now at Least I have the opportunity to clear the air and express my apology for saying something stupid and hurting such a dear person.

 

Heath :-[

 

[[be...]]

Dear Begood

I don't know your real name. I don't know who you are. All I know is that you are one of the kindest, thoughtful ,sincere people I have ever corresponded with, even if I don't know who you are.

I also know that at one time about 8 months ago, I wrote that I was jealous of the fact that you were so low in your dose. I didn't think I would ever get down that low. ( I still wonder when it will happen)

Right now I am feeling embarrassed and ashamed.

When I wrote I was jealous, I meant no harm. I was feeling amazed at what you had done so far in your taper and just wished I was at that place too. I did not mean In any way to wish you any harm or to hurt your feelings in any way. I wonder now after all these months, how much I had hurt you unintentionally and did not even realize it until I read your post today. I am absolutely mortified. I am not a mean person. I am so very very sorry if I came across that way.

I really hope you can forgive me and accept my sincere apology. I always thought that being jealous meant that you thought someone was in such a good way, had accomplished something great  etc, that you wished you could be like them. But not that you wished them any harm. I guess I used the wrong word. Next time I will explain myself further instead of using the word jealous.

I am sooo very very sorry. I wouldn't hurt you for the world. You have been such a kind and caring and helpful support to me. And I wish you only the best.

As I said, I am feeling embarrassed and ashamed, but I am glad you posted that, because now at Least I have the opportunity to clear the air and express my apology for saying something stupid and hurting such a dear person.

 

Heath :-[

Heath so sorry you have such a burden on your shoulders, but it was not you at all, it was a long time ago, and that member is not here anymore, you have not one thing to worry about, just keep on doing your thing and enjoy your life as much as you. We are good, and the person who said it, I really do not think it was malicious, but came from being stressed. That is why I wrote out yesterday about my journey, it is so much different and I was afraid that buddies were judging theirs with mine, and that should not be the case with me or anyone.