The Long Hold Support Group

[[He...]]

Hope,

I'm sorry if I scared you with my post. Did I say give up?  Give up to me means give up on my taper and go  back on benzos, but that was just my benzo brain talking during a very bad bunch of wdsx  that came all at once after a really good stretch of time with no wdsx. I was feeling quite awaful when I wrote that post.

Not to worry though, I will never give up this fight.

 

I'm still feeling quite awful, but I am dealing better with the wdsx today.

 

I hope you will stay strong. We will all be here for each other no matter how long it takes to get to freedom.

 

Heath

[[HO...]]

Hope,

I'm sorry if I scared you with my post. Did I say give up?  Give up to me means give up on my taper and go  back on benzos, but that was just my benzo brain talking during a very bad bunch of wdsx  that came all at once after a really good stretch of time with no wdsx. I was feeling quite awaful when I wrote that post.

Not to worry though, I will never give up this fight.

 

I'm still feeling quite awful, but I am dealing better with the wdsx today.

 

I hope you will stay strong. We will all be here for each other no matter how long it takes to get to freedom.

 

Heath

 

No it's not your fault it's the benzos!

[[HO...]]

It gets worse I rang a  not well known help line to ask if I have a legal right to stop my Doctor possibly cutting my Benzos  and the person told me that its no good holding 3, 6 months upwards and waiting until you stabilise then preached to me about  Professor Ashtons cutting rates which got me into this mess in the first place!!  She is  is working with people coming off Benzos and came off herself She said I should have continued cutting every 2 weeks no matter what at 1mg and not hold or do updose as its not going to work unless I do it Ashton's way, and holding no matter how long will make it worse not better and that's why I feel so rough. She's got me in a right state now on top of everything else the way I am today. 

 

So holding is bad now I'm so confused! This is all so scary. Maybe I should just start cutting before I stabilize after my cold turkey of a few days and reinstatement. So confused. Just like you. I'm so sorry your sick and your hearing/noise problems where you live.

 

Love Nova xxx  :smitten:

[[He...]]

WHERE IS ANN? I HOPE SHE IS OKAY!

 

Heath

[[no...]]

It gets worse I rang a  not well known help line to ask if I have a legal right to stop my Doctor possibly cutting my Benzos  and the person told me that its no good holding 3, 6 months upwards and waiting until you stabilise then preached to me about  Professor Ashtons cutting rates which got me into this mess in the first place!!  She is  is working with people coming off Benzos and came off herself She said I should have continued cutting every 2 weeks no matter what at 1mg and not hold or do updose as its not going to work unless I do it Ashton's way, and holding no matter how long will make it worse not better and that's why I feel so rough. She's got me in a right state now on top of everything else the way I am today. 

 

So holding is bad now I'm so confused! This is all so scary. Maybe I should just start cutting before I stabilize after my cold turkey of a few days and reinstatement. So confused. Just like you. I'm so sorry your sick and your hearing/noise problems where you live.

 

Love Nova xxx  :smitten:

No the woman was an arsehole and I'm feeling very fragile she's wrong but it got to me as I'm going through a really bad time right now another time I would have ignored the silly cow but I've had a lot of pressure today don't worry about one person and their ignorance .

Love Nova xxx :smitten: :smitten:

[[no...]]

Thanks everyone for your good wishes caring and compassion and prayers to :hug: It means a lot as I know that many of you are suffering grewtly  yourselves  xxx

 

Love Nova xxx :smitten:

 

[[Kg...]]

Nova I know we don't like to mislead our doctors but I know others who had this issue just told their doctor that had stopped tapering. Then they hoarded the medicine so that they could taper at whatever reduction they wanted.  Sorry you are having this problem. 

[[Va...]]

I'm feeling awful, want to cry.

Shortness of breath after just a short walk. Tired and achy. Feeling sick and neck hurts again too. A bit more tinnitus. It's easy to think you have thus withdrawal thing figured out when you are feeling good, but that all goes out the window when you start getting wdsx again. Feeling sorry fir myself. I always think I'm out of the woods when I'm doing good for two months and then bingo.

 

I have to get it through my head that this is not linear.

No wonder many many people just give up.

 

But I can't give up...crying helps get  rid of the stress in me but I just can't stand  this. I'm such a crybaby. So many of you here have it so very much worse than I do.  I really feel so bad for you. I hope you won't give up. You probably have it ten times worse than me.

 

Heath, a real mess and worse than Ive been in a long time. :-[ :-[

Hang in there Heath. I just went through a rough patch myself. It will get better so don't get discouraged.  --V

 

I get scared when people say give up what does everyone mean by that?😥

I think a lot mean "give up" tapering.  --V

[[Va...]]

WHERE IS ANN? I HOPE SHE IS OKAY!

 

Heath

Gard said Anne has been busy wrapping up the school year and will check in when she can.  --V

[[HO...]]

For Everyone Thats Having a Rough Time...

Be Well...

You're so sweet. Doing that while you feel awful. Tha k you!

[[HO...]]

My dear benzo buddies, begood, valley, Lynne Gard, MiYu, Cantfly,

 

A great big thank you. You have made me feel so much better. I realize after two days of this that it must be some kind of wave. It goes away And comes back about two or three times during a 24 hour period. very weird. Or maybe it's there but because I am trying very hard to distract, maybe I don't notice it as Much? I guess I just have to ride it out and never give up.

 

Be good, you said you don't know how to make it better for me. Well please know that you and the other buddies ALWAYS MAKE IT BETTER FOR ME. Just by reading your kind words of encouragement and caring makes me know that there are buddies out there that care enough to send me long paragraphs of hope. And it's just what I need. It's like you are giving me warm hugs. And you make me feel hopeful and understood..

 

MiYu, Begood, Gard, yes you have reminded me to go back to my coping skills. So even though I am feeling awful, my husband wanted to go for a ride. Instead of saying no. I said ok. It did help a lot.

 

Cantfly, I love your turtle and bouquet of flowers and your encouraging words. Maybe you should stay away from gaterade too?

 

Lynne, no I am really not sensitive to Gatorade. I hardly ever drink it. It's kind of gross if you ask me. But my husband's dr. Told him to drink it because he was low in his electrolytes. So I thought I 'd drink it too. I don't always to the wisest things! But I really don't think it was the gaterade interacting. Just thought I ask. But I'm not drinking it anymore!

 

Gard and BeGood and MiYu, thanks for making this crybaby feel better about the need to cry.

 

Valley, I hope your rough patches of late are improving. You are always encouraging others on this forum, but you very rarely complain about anything. Is that a macho guy thing? Maybe I should get some chickens to distract me. Is that your secret?

 

Well it's time for me to go to sleep, but I just had to thank you all for your response to my cry for help. I think you can tell that my attitude has changed and I am no longer feeling so awfully discouraged and needing to cry. I've said it before, but I'll say it again, I really really don't know what I would do without you all and this forum. Thank goodness for all of you. I really have no where else to turn.

 

I will try to keep my chin up and meet another day with a smile...as Gard always says, it's one day closer to freedom!

 

Heath :smitten: :smitten:

 

I'm sorry you're feeling bad too. What do you do to distract? I have a hard time with this because I can't sleep but I'm fatigued also.

[[HO...]]

It gets worse I rang a  not well known help line to ask if I have a legal right to stop my Doctor possibly cutting my Benzos  and the person told me that its no good holding 3, 6 months upwards and waiting until you stabilise then preached to me about  Professor Ashtons cutting rates which got me into this mess in the first place!!  She is  is working with people coming off Benzos and came off herself She said I should have continued cutting every 2 weeks no matter what at 1mg and not hold or do updose as its not going to work unless I do it Ashton's way, and holding no matter how long will make it worse not better and that's why I feel so rough. She's got me in a right state now on top of everything else the way I am today. 

 

So holding is bad now I'm so confused! This is all so scary. Maybe I should just start cutting before I stabilize after my cold turkey of a few days and reinstatement. So confused. Just like you. I'm so sorry your sick and your hearing/noise problems where you live.

 

Love Nova xxx  :smitten:

No the woman was an arsehole and I'm feeling very fragile she's wrong but it got to me as I'm going through a really bad time right now another time I would have ignored the silly cow but I've had a lot of pressure today don't worry about one person and their ignorance .

Love Nova xxx :smitten: :smitten:

 

Thank you Nova your so kind. I wish I could kick her ass for you:) You don't deserve that!

[[Th...]]

Now I'm really worried, I'm having a really bad day and  I rang my Doctor to try explain about my problems with noise sensitivity, and my neighbour problem. And he said he would send me to see an ENT Specialist about my ears, so I told him there's no way I can leave my home and travel due to my problems. He then went ton about have I got any discharge etc form my ears,  and he can't do nothing for me If I can't get to the ENT. so then I tried to explain to him about Benzo withdrawal was the cause , to which he then replied' ''I'm not going to put you back on Benzodiazepines''.

 

I then tried again to explain I wasn't asking him to do that that it was trying to get myself  off them that were the cause of all my health problems over the year's, and why the symptoms occurred, and my environment wasn't helpful at all. He then said I was tying up the phone as he's spent ex amount of time talking to me and that I had a lot going on and he can't sort everything over the phone( I had requested a house call but he rang me instead)  and to get my Housing officer to write and he will back me up about my sensitive hearing problem ( I feel he just said it to get rid of me). But he was very irate, and rushing me off the phone at that point. I hope I haven't shot myself in  the foot by mentioning the Benzos although he was mistaken that I was asking him to put me back on them when I'm not off.

 

That's really freaked me out now on top of everything else, and I was trying to tell him its no good me being put into another flat but he wasn't really listening so I had to ring the surgery back and I told the receptionist can she please tell the Doctor that I need a carer to stay over night but can't have one as I don't have a spare bedroom for them to stay in ,I can be put on the wanting  list for a house under that condition . I also then had to ring the housing officer, who expected my Doctor to write directly to her but My Doctors won't do that, but she said normally she wouldn't write as its not their policy it supposed to be the Doctor.

 

But she will make an exception for me as she knows how unhappy I am here, but I am freaking out that everything's going to go wrong with my Doctor, my Benzos might get stopped now or end up being worse that it already is, and things are really bad enough as it is. Say a prayer for me please Guys, I'm really worried now thanks.

 

 

Love Nova xxx  :smitten:

I'm so sorry your Dr. Treated you that way. I had a similar situation when my Dr. Put me on a new drug and I questioned her about possible interactions. She said there was none yet I found on the FDA website she was wrong. She flew off the handle ( must have hurt her pride ). She told me I was "crazy" for reading the internet for advice. Apparently we are not allowed to even research what we put in our body.

 

Long story short it seems Dr.s do not like to be asked questions they have no answer to so they patient shame you. Someone in a thread brought up how this is done to patients and has very common attributes to domestic psychological abuse. My Dr. told me I ways the first person to complain of nausea from anxiety?? I've caught her in many lies and contradictions. I now just use her to write my RX and I'm out the door. She don't give two because now we do phone visits where we talk 2 minutes she refills my meds and gets her 180$.

 

Sorry didn't want to make this about me but just wanted to relate. I think anyone with knowledge of the CNS would see that Benzos effect the ears. I believe they don't want to admit these drugs do damage beyond discontinuation. Sounds like she was passing the buck too. She had no answer didn't want to research it because there is no money in that.

 

I think Dr.s know that within 20 years or less they will be replaced by AI. Think about it a machine could do their jobs exceptionally. I can't wait!

[[Ki...]]

I understand everyones frustration with " those who dispense info"- as well as pills. My doc did not put any validity in DNA tests (I guess only oncologists see the use in knowing such things) but at least she did write me a script for an " updosed" amount so I can whittle my way slowly down the taper. She had initially wanted me off in 6 weeks! Im looking at over 2 years! So yep hoarding is a good way to do it. The stuff does not lose much potency in 2 years. And I bet a LOT of docs refuse to listen to the side effects- how could they give you something harmful? All pills are good or they wouldnt be giving them out. Not. 😖

[[be...]]

I understand everyones frustration with " those who dispense info"- as well as pills. My doc did not put any validity in DNA tests (I guess only oncologists see the use in knowing such things) but at least she did write me a script for an " up dosed" amount so I can whittle my way slowly down the taper. She had initially wanted me off in 6 weeks! Im looking at over 2 years! So yep hoarding is a good way to do it. The stuff does not lose much potency in 2 years. And I bet a LOT of docs refuse to listen to the side effects- how could they give you something harmful? All pills are good or they wouldnt be giving them out. Not. 😖

Kitty I have the hoarding down pat, sad it must be that way but I never know if things will change with my Doctor, so far he is on board with my own taper. But last visit he was very uncomfortable telling me that I would have to sign a contract and that I could be asked for a urine test, well I had one that day. So the Government is involved now and things are changing and I must be diligent to save all the Valium I can. As he told me of the new change, I was sitting tall, and made eye contact and assured him that I understood and relief came over him. I learned with my ENT Doctor to not talk too much about my benzo, what a bad person he was, but I handled that the right way. I checked with my GP and he said he would order my Valium no problem and he understood I wanted to taper. So on my last visit to ENT I walked out the door with my head held high, because I knew that I had just fired him....

[[ga...]]

WHERE IS ANN? I HOPE SHE IS OKAY!

 

Heath

Gard said Anne has been busy wrapping up the school year and will check in when she can.  --V

 

Yup. It' the end of the term right now. Other than very busy, both she and her husband were doing OK when she wrote about a week ago saying school would be finished in about a week. (FYI: She teaches college.)

[[ga...]]

I understand everyones frustration with " those who dispense info"- as well as pills. My doc did not put any validity in DNA tests (I guess only oncologists see the use in knowing such things) but at least she did write me a script for an " up dosed" amount so I can whittle my way slowly down the taper. She had initially wanted me off in 6 weeks! Im looking at over 2 years! So yep hoarding is a good way to do it. The stuff does not lose much potency in 2 years. And I bet a LOT of docs refuse to listen to the side effects- how could they give you something harmful? All pills are good or they wouldnt be giving them out. Not. 😖

Kitty I have the hoarding down pat, sad it must be that way but I never know if things will change with my Doctor, so far he is on board with my own taper. But last visit he was very uncomfortable telling me that I would have to sign a contract and that I could be asked for a urine test, well I had one that day. So the Government is involved now and things are changing and I must be diligent to save all the Valium I can. As he told me of the new change, I was sitting tall, and made eye contact and assured him that I understood and relief came over him. I learned with my ENT Doctor to not talk too much about my benzo, what a bad person he was, but I handled that the right way. I checked with my GP and he said he would order my Valium no problem and he understood I wanted to taper. So on my last visit to ENT I walked out the door with my head held high, because I knew that I had just fired him....

 

I haven't experienced that yet with benzos. Only in the past when a doctor wanted to put me on a narcotic (which I declined). I wonder if anyone else has experienced this with benzos. Anybody?

[[He...]]

My dear benzo buddies, begood, valley, Lynne Gard, MiYu, Cantfly,

 

A great big thank you. You have made me feel so much better. I realize after two days of this that it must be some kind of wave. It goes away And comes back about two or three times during a 24 hour period. very weird. Or maybe it's there but because I am trying very hard to distract, maybe I don't notice it as Much? I guess I just have to ride it out and never give up.

 

Be good, you said you don't know how to make it better for me. Well please know that you and the other buddies ALWAYS MAKE IT BETTER FOR ME. Just by reading your kind words of encouragement and caring makes me know that there are buddies out there that care enough to send me long paragraphs of hope. And it's just what I need. It's like you are giving me warm hugs. And you make me feel hopeful and understood..

 

MiYu, Begood, Gard, yes you have reminded me to go back to my coping skills. So even though I am feeling awful, my husband wanted to go for a ride. Instead of saying no. I said ok. It did help a lot.

 

Cantfly, I love your turtle and bouquet of flowers and your encouraging words. Maybe you should stay away from gaterade too?

 

Lynne, no I am really not sensitive to Gatorade. I hardly ever drink it. It's kind of gross if you ask me. But my husband's dr. Told him to drink it because he was low in his electrolytes. So I thought I 'd drink it too. I don't always to the wisest things! But I really don't think it was the gaterade interacting. Just thought I ask. But I'm not drinking it anymore!

 

Gard and BeGood and MiYu, thanks for making this crybaby feel better about the need to cry.

 

Valley, I hope your rough patches of late are improving. You are always encouraging others on this forum, but you very rarely complain about anything. Is that a macho guy thing? Maybe I should get some chickens to distract me. Is that your secret?

 

Well it's time for me to go to sleep, but I just had to thank you all for your response to my cry for help. I think you can tell that my attitude has changed and I am no longer feeling so awfully discouraged and needing to cry. I've said it before, but I'll say it again, I really really don't know what I would do without you all and this forum. Thank goodness for all of you. I really have no where else to turn.

 

I will try to keep my chin up and meet another day with a smile...as Gard always says, it's one day closer to freedom!

 

Heath :smitten: :smitten:

 

I'm sorry you're feeling bad too. What do you do to distract? I have a hard time with this because I can't sleep but I'm fatigued also.

 

Hi Hope,

I too am fatigued. My sleep has gotten better but it is still erratic.

My doc prescribed mirtazpaine in a very low dose(1/4 of a 15mg pill) that's 3.75 mg..it works great for me. I get between 9 and 11 hiurs of sleep when I take it. But I don't want to get dependent on another drug. So I take it only about once every 10 days, when my sleep begins to go down hill. It gets me back to a reasonable pattern of sleep. (Between 5-7 hours a night)(Most people take the med every  night, but my doc said I can take it on a "as needed basis). It is working for me and I am not dependent on it. This way when I don't need it anymore, I will NOT have to go through any withdrawal.

 

as far as distracting goes, I record the good movies that are on and only watch them when I need to distract during the day or when I can't sleep. During the day, I read, do some macrame', do some gardening, play on my iPad,. I am lucky enough to be able to get out if the house most of the time. My wdsx are usually not bad. I have friend across the street and we play mindless games like scrabble card games etc.

the main thing is to find something to do and not dwell on how you feel.

I've learned that if I feel bad, I'm not going to feel any worse if I go for a ride or do something, go for a walk, or get out if the house. Staying home is only going to have me dwelling on how bad I feel, so I have learned to push myself out the door whenever my sdfx are tolerable enough.

 

The main thing is to keep busy with something you like to do.

 

I sure hope your wdsx subside enough so you can get out of the house and maybe even do some mild exercising.

 

I don't know if that has helped. And I'm not saying it is easy. It certainly is not. I am quite a mess myself when my wdsx go south.

Try to stay strong. Your taper will end successfully one day and YOU WILL BE FREE OF YOU DRUG. AND LIFE WILL BE BEAUTIFUL AGAIN.

 

So keep up the fight! Don't give up or give in. Everyone here knows how tough this is and we are all in it together. We are Ll here for each other.

 

Heath

[[He...]]

Glad to hear that Anne is ok and just wrapping up her classroom for the summer. I used to teach kindergarten and wrapping up the end of the year was a tremendous job.

 

Hope all goes well for her.

 

Heath

[[He...]]

I Distracted today. Was still having the arm and hand pains , headache, fatigue, but when my neighbor dragged me out if the house, I felt better. we talked non  stop and before I knew it we had been running around and riding around for four hours.  Today the distraction worked. I'm glad I went with her, although I was hesitant because I really felt tired and sick. But It turned out to be the best thing for me.

 

My neck is really bothering me. I'm wearing that neck collar again and it helps a lot.

Seems like a bunch of my wdsx that had gone away have cone back to haunt me.

Well, maybe tomorrow will be better.  I sure hope so.

 

Hangin in!  Heath

[[Va...]]

I Distracted today. Was still having the arm and hand pains , headache, fatigue, but when my neighbor dragged me out if the house, I felt better. we talked non  stop and before I knew it we had been running around and riding around for four hours.  Today the distraction worked. I'm glad I went with her, although I was hesitant because I really felt tired and sick. But It turned out to be the best thing for me.

 

My neck is really bothering me. I'm wearing that neck collar again and it helps a lot.

Seems like a bunch of my wdsx that had gone away have cone back to haunt me.

Well, maybe tomorrow will be better.  I sure hope so.

 

Hangin in!  Heath

So glad you're able to distract Heath! 

[[He...]]

Someone here asked if anyone had to submit to a urine test.

 

I went to a wonderful addiction specialist on two occasions about 8 months ago. I went seeking some kind of group that I could join for people who were on benzos. Ireally wanted a face to face , human, alive group.

This doc urine tested me on both occasions. It was required to be her patient. I didn't care because I had nothing to hide.

 

The thing that upset me was that, I had gone to her to seek information about joining a group for support.

She explained that the only groups they had were for people who were OFF their drugs. I think they were 12 step programs.  They urine test people at every meeting. So I could NOT join any group because I was still on my drug, Valium.

 

Well duh, if I was off the drug, I wouldn't need a support group to get off the drug.

 

So that was a waste of time alright, however, she was a very kind, knowledgeable doctor, only she COULDNT GIVE ME THE HELP I WAS SEEKING!

Seems there is just NO LIVE GROUPS FOR PEOPLE WHO NEED SUPPORT TO GET OFF BENZOS. AT LEAST I COULDNT FIND ONE!

I'm just so lucky to have found this forum! bravo!

 

Heath

 

[[bl...]]

Heath:

Been off board a while. What hand and arm pain? I had a lot of that a while back? Can you describe?

Blue

[[He...]]

Heath:

Been off board a while. What hand and arm pain? I had a lot of that a while back? Can you describe?

Blue

 

Hi Blue pill,

 

It's hard to describe the pain.

It definitely is pain, not muscle spasm. It is present all at once in both arms from the upper arms all the way down to my fingertips.

It is almost like I am having a mild electric current going through my arms, but not a shooting pain. Just an ever present pain. Might also be explained like pins and needles but not like when your foot falls asleep. Maybe might be described as arthritis in your entire limbs.

Just a constant very bad aching pain. And definitely worse in my hands.

 

There, now are you confused.? Sorry, but it's so hard to describe.

It  started in just my right hand, then both hands and then both arms and hands.

 

Lately it has begun to subside on and off during the day. But it seems to always be there the next day. Doesn't appear to be going away. It's been pretty bad for about four days.

 

I'm pretty sure it's a wdsx so I'm not worrying about it. I guess that is helping me to deal with it. I'm not stressed about it, just annoyed and in pain and wish it would go away.

 

Does it sound like what you had? Did yours go away? How long did it take? Any suggestions to make it easier?

 

Hope you are doing ok.

 

Heath

[[no...]]

Hi everyone  I wish for everyone  today and beyond  better times, windows and great progress in healing 

 

 

                   

 

 

 

 

 

 

Love Nova xxx  :smitten: