Time frames and healing

[[BB...]]

Hello,

 

I’m looking for others validation, that, in fact, benzodiazepines can cause these long lasting symptoms.  I am at 6 months out and far from healed and had a conversation with one doctor and a friend that have put me in such a doubtful and depressed mood about all this.  In summary, when I explained to both a doctor and a friend that the way I was feeling was from taking Xanax for 5 years straight and reading off a laundry list of symptoms to them, they both told me there’s no way a medication could still be affecting me this far out and that I must have something else wrong with me.  Is there any proof, other than our collective stories, that these drugs do this kind of damage?  I’m so sick of having to feel this way and having the medical community and others telling me that I’m wrong.  My ongoing symptoms are dizziness, nerve pain, brain fog, depression, anxiety, fatigue, muscle cramps, and more.  Anyone’s take on this and how they look at it would be helpful.

 

Thanks,

BBmem2

[[Fp...]]

Ashton Manual

[[Fp...]]

Im two years out and still have symptoms. Doctors just don't get it.

[[pi...]]

long story short - medicine as a field is slow to catch up.

 

First of all there is a lot of evidence! e.g. case reports and anecdotes (which is low level but still counts). eventually once enough of these pile up, cohort studies, case series will begin. Also remember we are a small minority of the patients who take it, the majority of patients dont report our issue with stopping so its relatively easy to hand wave us away and deflect us for now.

 

with all scientific discoveries/changes in the thinking, there is a tipping point. There just hasn't been a tipping point yet sadly. Usually there is a 'landmark study' that will confirm or validate issues like this and then the physicians see it in the associated journals and the up-to-date 'standard' shifts at the next training seminar for the doctors, or there is a powerful group or individual who champions a cause enough to get an institutional investigation (this is why the jordan peterson thing caught my eye, he would be well known to a large population of medical professionals, this might cause them to look into this further). Sadly this process takes years, sometimes decades and the older doctors that dont engage in continuous education to refresh their knowledge are always out of date. I worked with doctors still prescribing first generation anti psychotics and barbiturates even though they had all sort of problems and side effects that were atrocious, and its purely cause thats what they know - even when there were safer alternatives right at hand.

 

Its getting closer and closer though.

 

and another thing to remember, psychiatry isn't like the rest of medicine in a lot of ways. ALOT of it is less science construct and more social construct which is why the DSM is updates consistently and things like homosexuality and gender dysphoria come and go in it. theres no blood test of mental illness! that tells you alot - its reflective of the fact that we dont really know anything about the "brain-to-mind bridge". and sadly the benzos failure-point seems to exist in this blind spot of understanding. This has gotten so bad and embarrassing in medicine thats theres alot of conditions thrown into this basket of "lets not think about it and just blame the patient". Think of things like fibromyalgia, chronic fatigue. Because medicine doesnt have the tools to do anything, it alot easier to just put this back on the patient. everyone in medicine is guilty of this at some point of their careers. trick is to find doctors who are self aware of how much they dont know, and who dont blame you for what they cant explain.

 

Theres also ZERO evidence this is in your head remember. so their theory has less evidence then ours, and we have alot of evidence like i said. you point some of that out to doctors, and watch the uncomfortableness rise in the room. I talk about this with doctors all the time, they dont have anything to say.

 

the best you will get is someone who can accept our limitations and do what we can. the rest are talking out of their hat in my opinion

 

thats my take, hope it helps.

 

 

[[pi...]]

something slightly depressing that might help you understand how medicine works so slowly is the story of Semmelweis.

 

https://en.wikipedia.org/wiki/Ignaz_Semmelweis

 

he believed in "germs" and said washing your hands would stop the sickness or these invisible creatures that lived on everything, peoples skin, in the air. It literally sounds stark raving mad.

 

The medical establishment laughed at him and mocked him. The entrenched viewpoints couldn't be shaken. They drove him into a mental asylum where he died.

 

a little while later his views started to penetrate the medical establishment and today we all recognize that he was right obviously and that germs exist all around us even if we cant see them, which is kind of crazy when you think about it. But lo and behold. it sounds nuts until we understand it later.

 

Remind you of anything else?

[[pi...]]

one more point, sorry, they actually teach the story of semmelwiess in medical school by the way as a warning to doctors NOT TO DO THIS. 

 

not all doctors are smart bud, gotta find a good one.

[[di...]]

Show this to your doctor and friend: https://www.benzo.org.uk/manual/bzcha03.htm#26

 

That's the Ashton Manual that some people here talk about. I linked to the relevant part of the manual. Here's a quote that talks about how symptoms can persist for many months in some cases:

 

A minority of people who have withdrawn from benzodiazepines seem to suffer long-term effects - protracted symptoms that just don't go away after months or even years. It has been estimated that perhaps 10-15 per cent of long-term benzodiazepine users develop a "post-withdrawal syndrome". Many of these people have taken benzodiazepines for 20 years or more and/or have had bad experiences in withdrawal. The incidence of protracted symptoms in those who have undergone a slow taper under their own control is almost certainly very much lower.

 

Your friend most likely assumes that the doctor has a clue what the hell they are talking about. It's kind of shocking that a doctor can have a strong opinion that something can't be true when it definitely is true. Since you have a friend who is taking an interest, I would first show this page to a friend. You can compare the laundry list of symptoms to the list of common symptoms given in the manual, here. You can also show your friend what people on this board are saying about their experiences with doctors who don't get it. You're in a minority to have this reaction but we exist (hi!).

 

You need a doctor that ether has experience getting sensitive patients slowly off benzodiazepines, or one that is willing to learn as you go at your own pace. If you can help your friend to understand this, they may be able to assist you with your current doctor or in finding a new one.

[[Ca...]]

...two more thumbsup for Diaz and Pinky..!!

 

I have a good Dr, she saw it unfold from before I was her “patient”.. Her role is one of support and encouragement rather than advice or treatment.. She put in a lot of her own time, and couldnt get help from her peers, but we got to the point where we both know its time for a long hold of several months or more at about the same time..

 

We had a conversation yrs ago about how common this is in a benzo sense..

In her time sge has had a “few hundred” people discontinue benzos, and of those only a couple had significant issues.. -Both had an extensive alcohol history and were doing ok within a year or so...

She has never seen anything like this level of umm complication before..

 

That said, a later conversation went quiet and awkward when I asked how many were “further treated” for returning or new “conditions” (that we would know of as tolerance, WD, or damage from these meds)..

This is the number that always throws me out and stops me from finding a rough number that im personally happy with, -as to just how many of us are significantly affected...

 

BBMem2, I see the “Its all out of your system and over with in X weeks..” as pure ineptitude.. Even for pure “addiction talk” its grossly lacking, and thats across a range of meds commonly known for a much shorter discontinuation profile.. I would think that by definition, that discounts dependance and tolerance too (at the very least).. -Those being “ neurological adaptations to the continued presence of a medication” or something like that...

 

The words “incestuous bias” spring to mind, particularly the higher up the psych ladder one “visits”... But thats a whole other (non benzo/med) story for me..

 

I dont know if you have seen the Benzo Information Coalition (BIC).. From memory, they have Info there for Drs, Family, and Friends.. -Some from other Drs and Professionals..

 

 

[[Ha...]]

I'm going to be showing my new doctor this tomorrow

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4014019/

 

Quote:

 

Benzodiazepine use for as little as 3 to 6 weeks, even while adhering to therapeutic doses, is associated with the development of physical dependence, with between 15–44% of chronic benzodiazepine users experiencing protracted moderate to severe withdrawal symptoms upon cessation including emergent anxiety and depressive symptoms [2,18,19]. For longer term use approximately 40% of people on benzodiazepines for more than 6 months will have a moderate to severe withdrawal

 

A number of authors have described both an acute and a protracted withdrawal phase [25–27] with acute withdrawal lasting 5–28 days and protracted withdrawal lasting for up to 12 months or longer [27]. It has been estimated that between 10–25% of chronic benzodiazepine users suffer protracted withdrawal symptoms upon cessation

[[le...]]

Show this to your doctor and friend: https://www.benzo.org.uk/manual/bzcha03.htm#26

 

That's the Ashton Manual that some people here talk about. I linked to the relevant part of the manual. Here's a quote that talks about how symptoms can persist for many months in some cases:

 

A minority of people who have withdrawn from benzodiazepines seem to suffenjjr long-term effects - protracted symptoms that just don't go away after months or even years. It has been estimated that perhaps 10-15 per cent of long-term benzodiazepine users develop a "post-withdrawal syndrome". Many of these people have taken benzodiazepines for 20 years or more and/or have had bad experiences in withdrawal. The incidence of protracted symptoms in those who have undergone a slow taper under their own control is almost certainly very much lower.

 

Your friend most likely assumes that the doctor has a clue what the hell they are talking about. It's kind of shocking that a doctor can have a strong opinion that something can't be true when it definitely is true. Since you have a friend who is taking an interest, I would first show this page to a friend. You can compare the laundry list of symptoms to the list of common symptoms given in the manual, here. You can also show your friend what people on this board are saying about their experiences with doctors who don't get it. You're in a minority to have this reaction but we exist (hi!).

 

 

 

 

 

 

 

 

 

 

You need a doctor that ether has experience getting sensitive patients slowly off benzodiazepines, or one that is willing to learn as you go at your own pace. If you can help your friend to understand this, they may be able to assist you with your current doctor or in finding a new one.

[/quote

 

I took NICE guidelines and Ashton manual to my doctor about how should withdraw gradually got ignored.Don't know about other parts of UK but where I live you have see GP in your catchment area so couldn't swap.But agree having the right doctor does make all the difference.

[[di...]]

I didn't even try, leann. Luckily I found a doctor to write my prescriptions and let me taper at my own pace.

 

Just so you know, though...

 

Unless you live in a remote area, there is probably more than one doctor's surgery where you're within their catchment area. I didn't know this until I moved homes, but there are a handful of surgeries I could be a patient at.

[[le...]]

Thanks we live in a large village, did consider moving while ago to  nearby village were told would have to change surgeries. Did look at websites for surgeries at nearby town but not in their catchment area. All bit hypothetical now damage been done, do think if could have some  diazapam to help on bad days would avoided  horrible mental symptoms caused by Sertraline.

[[di...]]

That said, a later conversation went quiet and awkward when I asked how many were “further treated” for returning or new “conditions” (that we would know of as tolerance, WD, or damage from these meds)..

This is the number that always throws me out and stops me from finding a rough number that im personally happy with, -as to just how many of us are significantly affected...

 

BBMem2, I see the “Its all out of your system and over with in X weeks..” as pure ineptitude.. Even for pure “addiction talk” its grossly lacking, and thats across a range of meds commonly known for a much shorter discontinuation profile.. I would think that by definition, that discounts dependance and tolerance too (at the very least).. -Those being “ neurological adaptations to the continued presence of a medication” or something like that...

 

The words “incestuous bias” spring to mind, particularly the higher up the psych ladder one “visits”... But thats a whole other (non benzo/med) story for me..

 

This effect muddies the waters so much. It's not only that healthcare providers aren't looking for it but they don't see it when it's right there in front of them. I bet even your relatively reasonable doctor tried hard to convince you that the withdrawal symptoms were all in your head. When your doctor tells you it's this and not that and you're in a desperate situation, you go with it. Not anymore for people like us but regular people defer to their doctor's presumed expertise especially in the case where they don't trust their own critical faculties, such as when faced with alarming psychological symptoms.

 

Best I don't go into higher up the ladder. I think it's worse than simply pure greed but don't want to go any further into the realms of speculation, especially not on this forum.

 

edit: Fixed some wording.

[[BB...]]

Thanks everyone for your comments, I agree with the disconnect with the medical field and long term effects of these drugs.  When I ask myself if this is something that I just have I can’t come up with another reason to feeling like this other than the drug.  We fall between the cracks, but I guess there’s really no treatment for this other than time.

 

Thanks,

BBmem2

[[pi...]]

Thanks everyone for your comments, I agree with the disconnect with the medical field and long term effects of these drugs.  When I ask myself if this is something that I just have I can’t come up with another reason to feeling like this other than the drug.  We fall between the cracks, but I guess there’s really no treatment for this other than time.

 

Thanks,

BBmem2

 

Your welcome BB, we all go through this bud, we get fed up, ask why and then stare at all these reasons and sigh. Its not one big thing i.e. greed etc, its a lot of little things. and many of those are really not understood. but keep trying, the sooner we rap our heads around it and learn it, the sooner we can bring the establishment on board.  :thumbsup: