The Long Hold Support Group

[[To...]]

ToomanyBennies-  I would be so scared of surgery too.  Ugh, how are we supposed to trust the doctors to know what is best when they have proven the don't?  It seems like everyone is getting this carpal tunnel surgery though, so you will be in good company.  At least two people on my facebook have gotten it in the last 3 months. 

 

I realize I spend way too much time on this forum.  I've started to imagine what all the different usernames look like in real life.  LOL. 

 

We are moving out of our apartment when our lease is up at the end of May and do not know where we are going yet.  I thought I was actually doing very well with my taper until the landlady sent an email about how she is going to come and take pictures next Tuesday.  That just made is so upset and angry.  However, it only lasted about an hour and a half and ya know, I realize I don't really care what she thinks, and if she thinks I'm too messy then, whatever. 

 

There is a crazy weird stain on the kitchen floor that I didn't tell her about when it happened- like 3 months ago, and now I have just told her.  I am curious to see how that plays out.

 

Hey, GC. It's just weird the things I am getting locked up on these days. No rhyme or reason -- anything in life is fair game. I just launch into high anxiety at the flip of a switch, lately. A little bit unnerving. I don't consider it withdrawal -- this must be the way I was when I started life with benzos so many years ago. Maybe more so, given a hypersensitive CNS. Who knows? All I know is that it sucks. I have to find the root cause and figure out some countermeasure.

 

Crazy about your apartment. I'd be a little freaked if I had to be out of my house in just a few months, especially not knowing where. Good that you don't care about what the landlady thinks - she'll be history in a few months anyway. Hope the split is amicable.

[[Su...]]

MiYu- Thank you so much for your support and encouragement.  We are actually having a better day so far.  She's actually relatively calm right now compared to yesterday--I'm sure it won't last the whole day, but just having a lower level of upset for an hour or so gives us hope that this will eventually settle down.

 

I'm so very glad to read this Laura, things heading in the right direction for your sister....

SS

[[He...]]

Time to vent...

 

I went to the psych yesterday. Had a long talk about the different ways people attempt to get off of benzos. He agrees that cold turkey is not he way to do it.  It’s way to fast and people suffer greatly and unduly when they do this. It can also be dangerous.

He said I was going awfully slow and that is ok! Also said many people try to go slow but dont have tha patience to stick with it and wind up giving up on the whole withdrawal thing.

He gave me accolades for sticking with it. He assures me that I will have no difficulty at all when I am ready to say goodbye 100% to the Valium because of the slow rate I am going. He really lifted me up and praised me.

Well I left his office feeling really good. This psych is really great. He’s letting me do it my way and he is actually supporting me and cheering me on. What a great guy!

 

Now mind you, I do not discuss hardly anything with my husband, simply because at the beginning of my taper I had such a hard time with wdsx and waves, and dizziness.  i was a MESS. AND HE JUST DIDNT UNDERSTAND!  So I have just been doing this by myself fir the past almost two years with very little conversation.

And I am now doing  quite well, living my normal life, working again, socializing, etc. Except for taking my once daily dose, life is normal. I can’t complain. The few bumps along the road do not affect my husband much at all.

 

Well I came home from the doc and decided to share the conversation with my husband. DO YOU KNOW WHAT HE SAID ?  He said, with a flippant attitude, “WELL, YA KNOW IT HAS TAKEN YOU TWO YEARS ALREADY!”  What the heck kind of a response was that!!?

All I wanted was a hug and maybe a few words like, yes, you’re really doing a good job, I’m proud of you, etc. And maybe a big hug?

I can not express how much he hurt my feelings!  Of course he apologized when I told him how he hurt my feelings. But that will never erase what he said.  Oh yes, I will forgive him by tomorrow probably...but want an ass he behaved like tonight!

 

At least my doc gives me accolades.

This is a lonely road I am going down, what we are all going down. Most people just don’t get it!

I sure am glad I have all of you here on the long hold support group to talk to and share things.

 

Thanks fir letting me vent. I feel better already. I know I am strong. I know I am doing the right thing. AND I AM PROUD OF ME! And I love myself! And I am doing this for ME! Nobody but me!  And if no one else cares, then screw them! There, I am not hurt anymore. Now I am MAD!  But I’ll get over it!

 

Goodnight, I love you all, dearest buddies!

 

Heath

[[He...]]

MiYu- Thank you so much for your support and encouragement.  We are actually having a better day so far.  She's actually relatively calm right now compared to yesterday--I'm sure it won't last the whole day, but just having a lower level of upset for an hour or so gives us hope that this will eventually settle down.

 

I'm so very glad to read this Laura, things heading in the right direction for your sister....

SS

 

This is good news Laura!

I hope it is the beginning of daily Windows. I hope it continues.

Heath

[[St...]]

Well Heath if your husband can't say it l will say it for him WELL DONE.You are amazing and you should be proud of yourself.

[[He...]]

Thanks Stut!

 

Ya know, he’s really a good guy, my husband. But sometimes some men can be real jerks!

Or they sure can act like one!

[[no...]]

Hi all    I'm still not sure whats going to happen regarding my Dr's cutting my prescription two days ago the post below is where my decision was............

 

  Hi all  I haven't sent the letter yet but will explain why, I spoke to the Head Dr  as the Dr that came to my home wasn't there again neither was the practice manager, and he said ( well spent 12 minutes rudely yelling at me and over me trying to talk) that once the other Dr has read my notes if he thinks there's no reason to keep me on them any longer them their going to take me off  But he was yelling at me being as they haven't done it yet  as the other Dr hasn't read all my paper notes yet, what's my problem? as I'm getting my 8MG weekly anyway.

 

 

I was trying to explain to him that I have severe  hyperacusis, along with tenacious tinnitus, and am worried that I maybe unable to make a weekly phone call as  for the prescription to be delivered as using the phone is agony! He also still insists their using the NICE Guidelines, and reused to look under NICE Guidelines Benzodiazepine and Z Drug withdrawal when I asked him too. They also will only prescribed Benzodiazepines on a weekly not monthly basis although I asked why I still get the other medication monthly, and I only get them as I'm terrified they  will stop the Diazepam if they know I stopped all the other medication ages ago

 

 

Anyway they won't budge as its their ''surgery's way of doing it'' so if they decided to stop you with no warning then they just do it. He even totally disregarded the fact I am on the waiting list to see a community health Dr whose trained in this field, and said if they decide to take me off they will do so regardless of what Dr's I'm waiting to see as he considers himself and all the other Dr's in his practice ''experts'' on taking people off Benzodiazepines by ripping them off at the highest dose possible as quick as possible???  Unbelievable!

 

 

So my plan is now being as they haven't cut my 8mg .....yet.    I was thinking that  it would be the best to leave it as it is for now rather than possibly add to fuel to the fire by sending the letter now as I can't complain about something that's not happened yet, and although the Dr in my home said he was going to cut my prescription and rip me off them that day, so far I am getting my 8mg dose weekly instead of monthly as its their procedure for prescribing Benzodiazepines and I've been told that its normal practice in other sugery's as well. So if any change then the letters going in pronto.

 

 

 

Love Nova xxx  :smitten:

   

 

BUT..............This decision is now under review after getting in contact with someone and sending them a load of information, including the long version and the shortened version of the letters I've drafted to send a complaint regarding my Dr's and the possibilty they may still pull the rug from under me without my legal consent by too rapid a taper or possibly CT.

 

After they finished looking at everything, and  this is a person that knows the law inside out as its part of their job as well, and they will also be adding to more legal stuff to my longer draft which in thier word's they think is 'brilliant'. And they didn't agree that I should wait until the Dr's do make a bad move then sen dit in as the threat is there and its still hanging over my head as there's no ''definate'' agreement be made regarding them messing around with my Diazepam without my consent.

 

 

 

Anyway, I have now began cutting again  I was going to start reducing the 10mg  anyway BEFORE the Dr got here as I  had up dose to from 3.45 to move last September, this week at my own symptoms base rate, although I'm 'very symptomatic' now made worse by the extra stress and this virus.

 

I am also concerned that besides withdrawal symptoms other symptoms are possibly known side effects of  being on the drug, especially as I've noticed a return of certain symptoms  that are gathering momentum that either went or although they weren't great were bearable as I got lower.

 

I tried a 1mg cut Wednesday but it was hell by yesterday ,  :D I can't belive it got me the NEXT day thay quickly??? So I'm now cutting by 1/2 an mg as from yesterday, and see how I go from there, who knows, maybe it will help as I said I think  some other stuff is side effects, I just hope I don't get any-more WD symptoms as the ones I got are pole axing me and have been for months since my wave got worse. I will keep you posted.

 

 

 

Love Nova xxx  :smitten:

[[no...]]

Hi all  Its back to the original plan send the letter if and when my GP changes my dose as I can't complain about what hasn't happend ......yet Still waiting for it though, but its DEFINATLEY illegal I have it from a VERY reliable source  

 

 

Love Nova xxx  :smitten:

[[La...]]

MiYu- Thank you so much for your support and encouragement.  We are actually having a better day so far.  She's actually relatively calm right now compared to yesterday--I'm sure it won't last the whole day, but just having a lower level of upset for an hour or so gives us hope that this will eventually settle down.

 

I'm so very glad to read this Laura, things heading in the right direction for your sister....

SS

 

This is good news Laura!

I hope it is the beginning of daily Windows. I hope it continues.

Heath

 

SufferingSixty and Heath

 

Thanks so much for the support.  We hope it continues as well.  It's kind of up and down, but we are beyond thankful for any calming she gets--even if it's just for a couple of hours here or there.  Last night was our best night in a while, in that she wasn't quite as terrified. Still scared, but at a more tolerable level.  We really need the GI symptoms to settle down (that's really what scares her)

 

Good luck to everyone else here

 

 

 

[[Gr...]]

Nova1-  OMG, I'm so sorry you are going through this with this new doctor.  I do think it's wise to make a cut now though, even if it is small, it will make that 8mg prescription last longer.  Hugs to you. 

 

Heathcliff-  UGH.  What your husband said was SO INVALIDATING.  Yes, it has been two years, two long years with much suffering and you hung in there.  In his defense, since you didn't talk to him much about it, then he probably didn't realize what  a big deal it was to you.  I complain all the time to my husband and also, in the last six months found everything to be his fault...so your husband should honestly feel grateful he didn't have to deal with what mine did. 

 

Today I went out for coffee with  lady who also had shares our school bus stop.  I like her and we talk a lot.  She told me how her sister is struggling whether or not to give her kid ADD medication and we talked about it and I was *SO CLOSE* to telling her about benzos but I didn't.  I realize I'm honestly not even sure how I tell this story.  It feels like such a long story for me.  How can I just wrap that up in a few minutes at the coffee shop?

[[...]]

Time to vent...

 

I went to the psych yesterday. Had a long talk about the different ways people attempt to get off of benzos. He agrees that cold turkey is not he way to do it.  It’s way to fast and people suffer greatly and unduly when they do this. It can also be dangerous.

He said I was going awfully slow and that is ok! Also said many people try to go slow but dont have tha patience to stick with it and wind up giving up on the whole withdrawal thing.

He gave me accolades for sticking with it. He assures me that I will have no difficulty at all when I am ready to say goodbye 100% to the Valium because of the slow rate I am going. He really lifted me up and praised me.

Well I left his office feeling really good. This psych is really great. He’s letting me do it my way and he is actually supporting me and cheering me on. What a great guy!

 

Now mind you, I do not discuss hardly anything with my husband, simply because at the beginning of my taper I had such a hard time with wdsx and waves, and dizziness.  i was a MESS. AND HE JUST DIDNT UNDERSTAND!  So I have just been doing this by myself fir the past almost two years with very little conversation.

And I am now doing  quite well, living my normal life, working again, socializing, etc. Except for taking my once daily dose, life is normal. I can’t complain. The few bumps along the road do not affect my husband much at all.

 

Well I came home from the doc and decided to share the conversation with my husband. DO YOU KNOW WHAT HE SAID ?  He said, with a flippant attitude, “WELL, YA KNOW IT HAS TAKEN YOU TWO YEARS ALREADY!”  What the heck kind of a response was that!!?

All I wanted was a hug and maybe a few words like, yes, you’re really doing a good job, I’m proud of you, etc. And maybe a big hug?

I can not express how much he hurt my feelings!  Of course he apologized when I told him how he hurt my feelings. But that will never erase what he said.  Oh yes, I will forgive him by tomorrow probably...but want an ass he behaved like tonight!

 

At least my doc gives me accolades.

This is a lonely road I am going down, what we are all going down. Most people just don’t get it!

I sure am glad I have all of you here on the long hold support group to talk to and share things.

 

Thanks fir letting me vent. I feel better already. I know I am strong. I know I am doing the right thing. AND I AM PROUD OF ME! And I love myself! And I am doing this for ME! Nobody but me!  And if no one else cares, then screw them! There, I am not hurt anymore. Now I am MAD!  But I’ll get over it!

 

Goodnight, I love you all, dearest buddies!

 

Heath

 

Dear Heath , I'm sorry , that was not sensitive of your hubbie at all ! Mean . No wonder you were hurt. He should be happy you are leading a mostly normal  life again.

I'm sorry you can't share it with him . I'm glad  you have the support of your psyche doc though ,

Love MiYu 

[[...]]

ToomanyBennies-  I would be so scared of surgery too.  Ugh, how are we supposed to trust the doctors to know what is best when they have proven the don't?  It seems like everyone is getting this carpal tunnel surgery though, so you will be in good company.  At least two people on my facebook have gotten it in the last 3 months. 

 

I realize I spend way too much time on this forum.  I've started to imagine what all the different usernames look like in real life.  LOL. 

 

We are moving out of our apartment when our lease is up at the end of May and do not know where we are going yet.  I thought I was actually doing very well with my taper until the landlady sent an email about how she is going to come and take pictures next Tuesday.  That just made is so upset and angry.  However, it only lasted about an hour and a half and ya know, I realize I don't really care what she thinks, and if she thinks I'm too messy then, whatever. 

 

There is a crazy weird stain on the kitchen floor that I didn't tell her about when it happened- like 3 months ago, and now I have just told her.  I am curious to see how that plays out.

 

Hey, GC. It's just weird the things I am getting locked up on these days. No rhyme or reason -- anything in life is fair game. I just launch into high anxiety at the flip of a switch, lately. A little bit unnerving. I don't consider it withdrawal -- this must be the way I was when I started life with benzos so many years ago. Maybe more so, given a hypersensitive CNS. Who knows? All I know is that it sucks. I have to find the root cause and figure out some countermeasure.

 

Crazy about your apartment. I'd be a little freaked if I had to be out of my house in just a few months, especially not knowing where. Good that you don't care about what the landlady thinks - she'll be history in a few months anyway. Hope the split is amicable.

 

TMB ,

I'm pretty sure what you're experiencing is all WD related . They are classic symptoms . The anxiety and looping thoughts . Try not to be too hard on yourself and remember , these symptoms will pass in time .

 

A friend of mine who's tapering just had knee surgery and had local anaethesia , no benzos for sedation , nothing . She did great and no lack lash from the surgery either .

You can have it done as GC said with local and no benzo ps , it's up to you ! Good luck .

Love, MiYu 🙏🏻

[[...]]

Now my turn to vent . Im Having such a rough time , and like you nova , I have side effects that are  pretty nasty .

I'm really not well and I have diffculty walking at the moment . I'm not sure what to do . I hate taking these meds every day when they make me feel so lousy . But I'm also afraid of the WDs as I don't want to make myslef worse than I am already .

 

I've been doing really tiny cuts and it effects me so much . I think I've managed about .18 equivelant of V in 4 months .

 

And been housebound most of that time , and extreme stress intolerance .,

 

Do I hold ? Do I taper and get lower in dose where I know I will feel better? I know no one can answer this for me . I'm just so tired of not making and feeling so bad day in day out .

 

I just don't have a strong baseline to taper from still.

 

I don't have anxiety.  All my symptoms are physical pretty much .

 

Well, I have to remember this too shall pass, but at what cost and how long being disabled ....

 

Feeling down today and having a hard time finding hope .

 

 

Love MiYu

 

[[Gr...]]

Aww MiYu.  :hug:

[[He...]]

Hi Miyu green cup, stut  and everyone else who responded to my Venting post.

Thanks fir your kind words of support.  I’m ok today.  Hubby and I are ok. Water under the bridge.

But I am back to keeping my journey to get off of Valium and all the wdsx and other mountains to climb, to myself! It’s bettrr that way.

 

I hope you are all having the best day possible now. I know many of you are suffering And I wish I could offer you good advice but not sure I can.

 

Miyu, I feel so badly for you. IMO I think you should hold. if you are still getting bad wdsx you probably are not yet stable. I know it’s a long haul, but perhaps your CNS just needs a really long time to hold.

 

Nova, omg you are getting so much anxiety from your absolutely terrible drs! I wish you lived near me in the USA.  I’d send you to my doc. I honestly don’t know what to tell you except keep up the  fight.

Is there any way you can go to an entirely new doc? I believe you are in the UK. I don’t know how the health system works there.

 

Good luck to you both! I hope you both get the help and relief you so much need.

Stay strong!

Heath 

[[ga...]]

Miyu, I'm so sorry you are having such a rough taper. But do hold onto hope. Have you read the success stories recently? I like to go over there when I am feeling like I am never going to get through this. And, remember, benzos make us doubt ourselves. You are stronger than the benzo lies tell you!

 

Gard

 

P.S. Hi to everybody else. Didn't have time to read all I missed, just the last couple of posts.

[[Al...]]

Miyu,

 

Hang in there Miyu. We all take a slightly different path to reach the end. Like you I seem to have many physical sxs.

It all sucks and messes up our lives but it will get better.

Sometimes just when things seem so terrible we can wake up the next day and the sxs have lifted and life seems great again.

Have faith in your bodies ability to heal. It really does but as you know it’s not linear or predicable in any reliable way.

 

Sending a big mess of positive energy your way! 

 

 

ATU🙏

[[Su...]]

Hi all  Its back to the original plan send the letter if and when my GP changes my dose as I can't complain about what hasn't happend ......yet Still waiting for it though, but its DEFINATLEY illegal I have it from a VERY reliable source  

 

 

Love Nova xxx  :smitten:

 

Good luck with all of this Nova!  It's quite the fight to have to do in the midst of tapering!  You go

SS

[[...]]

Thank you for your encouragement and support everyone , it means a lot to me . You know how it is , our benzo brains need so much reassurance that we're going to be ok , and just those words can make such a difference .

 

Thank you  :smitten:

 

MiYu

[[be...]]

Thank you for your encouragement and support everyone , it means a lot to me . You know how it is , our benzo brains need so much reassurance that we're going to be ok , and just those words can make such a difference .

 

Thank you  :smitten:

 

MiYu

MiYu, you are one of the Strongest buddies I know, please remember that you will have your day also, waiting to feel better is so hard. Stay Strong as our buddie Cant would say. 🕊 Peace and Hugs.

[[Va...]]

Hi all!  I got extremely busy again but always catch up on the thread.  I do have some sad news.  Cookie died.  I found her frozen by the door of the coop in the morning so I have no idea what happened to her.  She was getting old so it was not really unexpected but will miss her friendliness. 

 

MiYu - Sorry for the continued difficulty.  All you can do is take care of yourself and know that someday this will be behind you.

 

Heath - Sorry about the insensitive remarks from your husband.  I’ve been on the receiving end myself.  Unfortunately if a person hasn’t gone through benzo withdrawal will never understand how dreadful it is.  If I hadn’t experienced it myself, I can’t say for certain that I would be sympathetic to someone going through it. You get kudos here though. Well done! You’re doing fantastic!

 

Nova - I hope the doctor situation works out.  I can only imagine the extra stress that you feel.

 

Taper is going well with just minor symptoms.  Hope you all have a great night!  —V

[[ga...]]

Hi all!  I got extremely busy again but always catch up on the thread.  I do have some sad news.  Cookie died.  I found her frozen by the door of the coop in the morning so I have no idea what happened to her.  She was getting old so it was not really unexpected but will miss her friendliness. 

 

So sorry to hear about Cookie. We will miss her, too.

[[ga...]]

Tried to speed read to catch up, but forgot most of what I read.  Was sad to read of Cookie's passing. Also very sad to read of all the struggles. But I'm proud of everyone on this thread. You are all true warriors. One day we will win this battle.

 

Now back to my school work. My, this benzo brain does not want to retain information. (Prefer to blame benzos than admit the old gray mare she ain't what she used to be. )

 

Hugs to all.

Gard

[[Va...]]

Tried to speed read to catch up, but forgot most of what I read.  Was sad to read of Cookie's passing. Also very sad to read of all the struggles. But I'm proud of everyone on this thread. You are all true warriors. One day we will win this battle.

 

Now back to my school work. My, this benzo brain does not want to retain information. (Prefer to blame benzos than admit the old gray mare she ain't what she used to be. )

 

Hugs to all.

Gard

Thanks for the well wishes gard!  I’m proud of you too. 

 

[[He...]]

Nice to see you back here Gard!! Good luck with your studies. I hope your taper is slow and timely and with only little blippy wdsx if any at all! 

 

Hope you are taking care of YOU,❤️

Heath