What do I say?

[[Da...]]

So I have an appointment with the addiction agency on Tuesday, it's just a review of my Subutex program, but S/O wants me to tell them about my Benzo WD sxs. Basically, sparing you all the gory details, this agency pressured me to R/T off the Benzos or face a forced R/T of the Subutex. I was offered no medical assistance or any kind of guidance other than threats when it came to stopping the Benzos. and they continue to hard sell psych meds which I refuse to accept because I know if I put any more drugs into my tortured body, it'd spell the end for me.

 

His logic is they always ask how I'm doing and how I would rate the state of my health and he says I should be honest and tell them the truth. I'd rate my physical health -10. I need him to come with me because these appointments are like military court hearings and I am too sick to make much of case for myself.

 

They think that because I am now finally testing clean for Benzos, my problems are over. It suddenly dawned on me the other day that I have never faced a problem in my entire life before Benzo WD. The only thing that can scrape remotely close is watching people I love die.

 

We are dealing with an astonishing level of ignorance from this agency, and total lack of any kind of compassion or understanding. These are people who take Wikipedia articles as medical facts. Yeah, they got the info on the designer Benzo I was using from Wikipedia and copy-pasted it into my medical notes!. They even think a drug's half life stipulates when your urine should test free of it.

 

So if I am to be honest, wtf do I say?. I know I'll be met with 'yes but we've offered you our magic wonder drugs and you refused, so you refused treatment' blah blah. I do have my regular doctor to back me up if needed, as he is a real diamond in the rough. I got him to put in my notes that I am NOT to be given any Benzos period, and only he can prescribe any head meds. He totally gets just how terrible this agency is, so if I need to tell them to get in touch with him, I can, but they won't. They think they're above reason, above ethics, and above everyone who isn't bound by their suffocating targets and red tape.

 

 

[[Da...]]

Also last time I saw them I got a copy of all my medical notes and they put in there 'no signs of withdrawal'. I didn't tell them because they neither understand nor care. Part of me wants to make them though, if not for me then for someone else. I am just at a loss as to how to go about it.

[[Da...]]

What this comes down it is that if you tell these people you are having trouble with benzo withdrawal they will cut off your suboxone which you need for opiate WD. That would def put me between a rock and a hard place. Here in the US doctors are only interested in making money so if one tells you something you don't like you can just find another one. Suboxone here is a very profitable business they tried to put me on it and used it to WD over 5 days but I opted not to take it. I'm sure that has added more degrees of suffering during this WD cycle. Since you are in the UK with socialized medicine they have more power over you.

 

You have to decide what you want to do, it know you are like news flash. I would have trouble being dishonest if I was asked. They basically are holding our a caret and telling you that you have to beg to get it. If you say oh I'm just fine and youre not, the next person suffering gets disbelieved. I am a person who hates talking about this so much with anybody that I never tell my MD anything about it, he is not the one who prescribed it to me in the first place, my other doctor prescribed it for 15 years, talk about fucking someone up. I believe I would have to be honest and say I'm dealing with a lot of anxiety and whatever your symptoms are. But I believe you have to choose. However if you told me you decided to say I'm dng great now go ahead and write my prescription I would say you did the right thing too.

[[Da...]]

What this comes down it is that if you tell these people you are having trouble with benzo withdrawal they will cut off your suboxone which you need for opiate WD. That would def put me between a rock and a hard place. Here in the US doctors are only interested in making money so if one tells you something you don't like you can just find another one. Suboxone here is a very profitable business they tried to put me on it and used it to WD over 5 days but I opted not to take it. I'm sure that has added more degrees of suffering during this WD cycle. Since you are in the UK with socialized medicine they have more power over you.

 

You have to decide what you want to do, it know you are like news flash. I would have trouble being dishonest if I was asked. They basically are holding our a caret and telling you that you have to beg to get it. If you say oh I'm just fine and youre not, the next person suffering gets disbelieved. I am a person who hates talking about this so much with anybody that I never tell my MD anything about it, he is not the one who prescribed it to me in the first place, my other doctor prescribed it for 15 years, talk about fucking someone up. I believe I would have to be honest and say I'm dealing with a lot of anxiety and whatever your symptoms are. But I believe you have to choose. However if you told me you decided to say I'm dng great now go ahead and write my prescription I would say you did the right thing too.

 

If I don't tell them, they'll only go and judge me based on my appearance anyway, which could lead to accusations of some form of ongoing substance abuse. I'm also worried about the random bruises all over my body because they think S/O beats me!. Again a judgement made based solely on someone's appearance. This organization gets paid for every person they get off Subutex/Methadone/all drugs. I do worry my WD sxs will be mistaken for either ongoing drug use (some obscure substance that doesn't show up on tests) or an adverse reaction to the Subutex. We do have counter arguments to pretty much everything they say, not that that is at all difficult when dealing with this kind of ignorance.

 

I discovered they obtained info on Diclazepam from wikipedia and/or possibly a site called 'psychonaut wiki' which is a drug use information site. They copy-pasted this into my notes as a counter argument against me trying to explain that a drug's half life was unrelated to the length of time it could be detected in urine.

 

The truth is I really want them to know what their ignorance has done to me, what forcing me to R/T from such a high dose has done to me. I laughed when I read 'no signs of withdrawal'. I mean come on, how can someone who came off a very high dose of Benzos in such a short time NOT be experiencing WD?. This is supposed to be an agency who help people with exactly these kinds of things!. It's not possible for someone in my situation not to have withdrawal symptoms.

 

I still can't get over that appointment in October and I was obviously extremely sick, but because my test was still positive for Benzos, it was all seen as ongoing use, despite me being off it for almost a month. Oh no, wikipedia says it's detectable in urine for just 6 days! LMFAO.

 

I'm also going to ask the guy who is assigned to work with me to define progress, as he says he's going to pass me on to someone else as I haven't made any. Well I managed to get off what is very probably the sole hardest drug to get off with no medical assistance, so I intend to ask him to define progress. My existence certainly isn't progress to me, being bedridden isn't progress is it. I am livid.

 

 

 

 

 

 

 

 

[[Gr...]]

Hi DappleApple

 

Crumbs who are these people? They sound awful! To be a drug agency and be that ignorant about benzo's is shocking!

I'm in the UK too. My GP's are completley ignorant but the drug agencys I worked with at least seemed to have a little understanding and knowledge.

I guess what Davis said, depends what you want. Do you want to continue on the suboxone and what are the plans. Truth is it might not matter what you say. If they are that harsh they may have a plan to push through? Is that possible? awful awful awful.

Sounds like you're suffering a great deal and pushing through as best you can. Maybe getting acknowledgement from them is not going to be possible right now but you could wait until you're feeling stronger in yourself down the line and then make a complaint of some kind.

Hang in there, sounds rough.

[[Fi...]]

"...Basically, sparing you all the gory details, this agency pressured me to R/T off the Benzos or face a forced R/T of the Subutex. I was offered no medical assistance or any kind of guidance other than threats when it came to stopping the Benzos. and they continue to hard sell psych meds which I refuse to accept because I know if I put any more drugs into my tortured body, it'd spell the end for me... "

 

Are you really stuck with these idiots?

 

How about they answer some queries from your solicitor? I imagine they might change their tune. 

 

Personally, I'd be outta there. There will be plenty of time, down the road, for you to be full and frank with them and to make your points fully and clearly. Meanwhile why not continue your programme with your Doc, who seems to understand.

 

 

 

 

 

 

 

[[Da...]]

Over here regular docs don't deal with Subutex sadly. I am going back to see him though to further discuss this.

 

I told them this morning and they just dismissed what I said and said I shouldn't be getting withdrawal symptoms beyond the first couple of weeks. I expected that as they have no clue, they genuinely have no idea and do not usually deal with Benzos. I know different but I would hate to be someone who didn't because it's so easy to convince yourself that something really is seriously wrong with you.

 

I told them I'm too sick to leave the house, they just dismissed it all. I am getting worse, I'm bedridden. All they saw was me being able to get there today. Well no joke it took me three hours to walk to the pharmacy and then get there, and of course I'm having a major crash now. I do intend to keep chipping away at them.

[[Da...]]

This agency also want me to attend groups for people who have stopped their illicit drug use and need to work on their futures and remaining drug/alcohol free. Now I have never used 'illicit' drugs apart from weed, whereas most of the people they deal with are illicit drug (mainly heroin) users and alcoholics. Now I do know these groups may be very beneficial for those people, but I did tell them besides not being able to walk up there every week, and not being able to sit for an hour due to my Benzo damaged, misfiring CNS, it would also expose me to people who may be using Benzos and I feel very vulnerable to the risk of a relapse. I also said it would not repair my damaged body. These groups are being imposed on people who are on substitute meds.

 

I know a lot of alcohol and drug users are prescribed Benzos, and all it'd take is for someone to mention the positive effects of Benzos and I know I'd be off on a search for some.

 

I now have no life, I can barely walk, my right side is now so severely affected my leg randomly gives out and I have to move it with my hand.  I'm bedridden 98% of the time. I really don't get what people mean when they say 'windows'. My guess is they mean breaks from the psychological sxs. All my sxs are physical, organic, coming from somewhere inside my damaged corpse of a body. It's 24/7, this is as psychological as a broken bone. It's a physical injury, and physical injuries don't ever let up.

 

 

[[Fi...]]

I really don't know where these control-freaks get off Dapple.

 

So sorry you're embroiled in a misplaced, wrong-headed, ideological system.

 

Take courage from the fact that this far you're played a blinder and that our bodies do heal with time - even if, right now, it may seem to you, in your current state, that healing is "against the odds".

 

One time, I was as equally despondent as you are now - because that it how things 'felt'; these days, I know I was wrong about that. 

[[Gr...]]

Hey hey. Sounds like no amount of explanation from you will help them to understand. Like you this benzo withdrawal has been the hugest learning experience. And I KNOW inside its from the bz withdrawals but you cannot impart that knowledge in a stare! I think I tried many times!

I know the tablets you were taking. I supplemented with them at times.

I couldn't stop at the end and got in a huge mess and went to treatment. If I was at home I couldn't of done it so amazing you got yourself benzo free.

I was always a drug user from partying as a teenager and later used opiates and bz daily to buff me from life. I have gone down the 12 step route cos I've burnt all other bridges and was broken inside. I had 8 months in primary then secondary rehab and let myself get 'carried along' by the peeps I was in there with. It's been a slog and I still get times of trouble. I think I may of had what they call 'a window' at about 9 months and things have been really rocky but they do get better. I promise.

I was bedridden when I was in tolerance withdrawal and agoraphobic. And I had to get my methadone every day. I used the stand at the window and stare out thinking what has become of me.

And here and the facebook group are all that ever really understood/understand this.

I find Don Killans site really helpful too and listen to his videos every week.

Benzo awareness! Thats what the world needs.

Crippling horrible toxic things