Dangerous dump diagnoses

Hello all.

In the course of my Benzo Beano I have seen many doctors.

Without exception they have been very limited in their knowledge of benzodiazepines/tolerance and withdrawal. Because of this(or perhaps because of a deep reluctance to acknowledge their role in causing the problem I have been left to deal with)I have been repeatedly labelled and disposed off into the relatively new, rapidly-expanding, dump diagnoses that are a prominent feature of "modern" medicine.

I would be interested to know how many of you have been victims of this game. It's important because, once in a diagnostic dump(and all specialties have them)the tendency is for ones carers to ignore the bleeding obvious and, with the best intentions, treat the new label...often with further psychoactive substances. This mislabelling is arguably the single biggest obstruction to obtaining the help you need from the dysfunctional system that is Western medicine.

What sort of conditions am I referring to?

There are several pretty obvious ones that could qualify.

1. Chronic fatigue syndrome; yes, I'm coming off diazepam 100mg and I sleep a couple of hours every other day. I am bloody tired.

2. Irritable bowel syndrome; I was offered this when I capriciously cold-turkeyed off zopiclone in the middle of my taper and duly got the gas, bloating/distension and variable bowel habit that is benzo belly. Interestingly none of the four gastroenterologists I have seen had ever heard of this.

3. Fibromyalgia; I undoubtedly fulfil the diagnostic criteria for this condition. Benzos attach to receptors in skeletal muscle and the pain and stiffness that signal their departure have to be endured to be believed.

4. Some of the dysautonomias; the heart is one big skeletal muscle. Taking benzodiazepines routinely leads to a relative tachycardia, postural and orthostatic hypotension(the tendecy to get an even faster pulse, lower blood pressure and pass out if standing for too long). Call it POTS, or something more abstruse, or hold your diagnostic hand until this person has withdrawn the benzo.

5. Intractable major depression: not responding in a recognisable fashion to antidepressants led me to ECT. Offhand I wouldn't recommend letting anyone take a sledgehammer to your head before they consider what benzos or their withdrawal may be doing to your mood.

6. Generalised anxiety disorder; it's the stress of modern living isn't it? Either that or the medication all too often involved in its management.

7. Cyclothymias up to and including the increasingly common "bipolars"; you all don't need me to tell you how your mood can cycle from anxiety to depression in one day. Add a little akathisia and you're well on the way to adding antipsychotics to your benzos and antidepressants(olanzapine(Zyprexa) in my case...a truly dirty drug with a definite tendency to invite you to kill yourself).

8. Social Phobia; once locked into the Hell of withdrawal the outside world is irrelevant, unattractive and, above all, SCARY.

I'm not saying that any or all of these conditions don't exist in the absence of benzos/antidepressants etc.

I AM suggesting that the protean presentations of benzodiazepine addiction can, and all too often do, fulfil the diagnostic criteria for many of the softer, and even some of the harder clinical entities. I am suggesting some of these are not "entities" at all. They are just one of the many ways that medicine is actively avoiding the problem of benzodiazepines.

It's bad enough to get no help in withdrawal. To get a shiny new label that distracts from the main event is positively harmful.

Have a good day.

spartacus

During withdrawal I've been diagnosed with IBS, general anxiety disorder, Fibromilagia and bi-polar.

Each time I didn't know I was in withdrawal and given more benzos.  :'(

In 2012 (before finding BB forum) I did a cold turkey. I began having bad symptoms such as you describe, but I never made the connection with withdrawal. I made trips to the ED and saw a number of specialists. None of the doctors ever put it together enough to diagnose me with benzo withdrawal. Each specialist did his thing and then me dismissed me once his particular specialty was exhausted.

I never realized before that specialists are not trained in, nor well suited to, diagnostic medicine unless it concerns their particular specialty. My family doctor was aware of all the tests I had, and even though he came closer than anyone else to treating me as whole patient instead of a particular organ, even then he did not put it together.

On doctors advice I saw a Psychiatrist for the first time ever, and that was a disaster. I won't go into detail except to say that his "solution" to every problem was to add yet another drug.

Finally, in part because of the BB forum, I realized that my problem was withdrawal. Even then I was in denial and found it hard to believe that withdrawal was 100% of my problem. I thought I was just a little bit nuts. I next stabilized on 10MG Valium. In January, my first cut was a 50% cut, followed by another 50% cut in the same month. Since then I been on a slower taper.

I never reinstated to a larger dose despite the usual severe withdrawal symptoms. Now that I've cut by over 80% in three months, I see light at the tunnel's end. Not only are my symptoms vastly improved, but some of the reasons I started on benzos in the first place seem to have greatly improved.

I'm not very critical of physicians (except for Psychiatrists.) I believe physicians are not trained for diagnostic work outside their particular specialty. It was a revelation for me that the closest thing to a Hugh Laurie style "House" type diagnostician is a family doctor. A GI specialist is great if you have an ulcer or H-Pylori, but if you have benzo belly he is worthless. A cardiologist is great if you have a heart condition, but he knows nothing of benzo induced palpitations or tachycardia.

I believe the problem with physicians lies in their training (or lack thereof). I also believe that there are vested interests who profit from drug use, and they obstruct public awareness about benzo use. Yes, they even negatively influence training at the medical school textbook level.

This situation will eventually change. Someday people will be astounded at the ignorance that once prevailed just as we are astounded that doctors once bled their patients as a "cure."

I'm not bitter about this. There was once no Polio vaccine either. We were just born a too soon.

tim; Thank you for your kind words.

Hopenow; thank you for adding weight to my theory.

Zigzag; I agree with all you say. In particular the narrowing of focus in the training of future specialists. This mattered less when General Physicians or Internal Medicine specialists roamed the earth in large numbers. They have now largely become extinct; it was always a demanding role but has become impossible as the knowledge base appears to expand.

Because in many ways it is just a perceived expansion. What is still missing in theories of causation/cure for major disease groups is a void that has been filled by a wholesale expansion in therapeutics...and doctors are not firing blanks any more, you can tell that from the collateral damage they cause.

I blame penicillin. It was the first "magic bullet" that really suggested to doctors they could try to fix you.

They were then easy prey for Big Pharma, the vested interest to which you allude. "They" consciously and cleverly drove the rush to the lunatic polypharmacy that will indeed lead to our time being viewed as a new Dark Age in the history of medicine.

It was the outgoing CEO of Glaxo who first pointed out to his colleagues that real profit lay not in treating the sick; they had a stubborn tendency to die or get better. The megabucks were to be had from mass-medicating the largely "well", even if this meant creating new disease entities(or expanding the umbrella of those already in existence).

In this vein it is always amusing to me to know that Prozax was first tested as an antihypertensive. When it was apparent that no amount of "random" controlled trials would make this one fly, casting about for another sizeable and not immediately-dying treatment group led the makers to try anti-obesity as a niche for their new agent. Again with no statistical luck.

Happily for the shareholders next in line for the treatment were the growing(or artificially cultivated)army of the "depressed". And so the wonderful SSRIs were born. One in three adults in the Western world have the potential to regret this. I am one of them.

Cheers, spartacus.

i think i couldve been diagnosed with all of it when i ct benzos. i stayed away. the damage is done.

i probably wouldve been put on lamictal or some oher drug. uggh!!

quitting benzos and dealing with all the awful sx. well, face it drs left us in WORSE shape

Hello Gardenia.

And thank you for your post.

It is only since becoming less brain-dead(below 10mg of diazepam)and discovering Benzobuddies that I have realised that my sorry catalogue of disasters was not an aberration. Paying into the poor-me syndrome that can blight benzo withdrawal I saw it as a tragic one-off and, with thanks to paranoia, probably my own fault.

Now I realise it is the norm worldwide.

Take care.

spartacus

I realise I forgot the real killer label.

Early Onset Dementia;

presents under the age of 65 with memory loss, impaired cognitive ability, loss of communication skills, personality change, confusion, agitation, apathy, restlessness, sleep disturbance.

What can I say? Guilty on all charges.

Luckily, in the absence of a brain biopsy, a post-mortem diagnosis. I did what I could in this direction.

spartacus

Hello all.

 

In the course of my Benzo Beano I have seen many doctors.

 

Without exception they have been very limited in their knowledge of benzodiazepines/tolerance and withdrawal. Because of this(or perhaps because of a deep reluctance to acknowledge their role in causing the problem I have been left to deal with)I have been repeatedly labelled and disposed off into the relatively new, rapidly-expanding, dump diagnoses that are a prominent feature of "modern" medicine.

 

I would be interested to know how many of you have been victims of this game. It's important because, once in a diagnostic dump(and all specialties have them)the tendency is for ones carers to ignore the bleeding obvious and, with the best intentions, treat the new label...often with further psychoactive substances. This mislabelling is arguably the single biggest obstruction to obtaining the help you need from the dysfunctional system that is Western medicine.

 

What sort of conditions am I referring to?

 

There are several pretty obvious ones that could qualify.

 

1. Chronic fatigue syndrome; yes, I'm coming off diazepam 100mg and I sleep a couple of hours every other day. I am bloody tired.

 

2. Irritable bowel syndrome; I was offered this when I capriciously cold-turkeyed off zopiclone in the middle of my taper and duly got the gas, bloating/distension and variable bowel habit that is benzo belly. Interestingly none of the four gastroenterologists I have seen had ever heard of this.

 

3. Fibromyalgia; I undoubtedly fulfil the diagnostic criteria for this condition. Benzos attach to receptors in skeletal muscle and the pain and stiffness that signal their departure have to be endured to be believed.

 

4. Some of the dysautonomis; the heart is one big skeletal muscle. Taking benzodiazepines routinely leads to a relative tachycardia, postural and orthostatic hypotension(the tendecy to get an even faster pulse, lower blood pressure and pass out if standing for too long). Call it POTS, or something more abstruse, or hold your diagnostic hand until this person has withdrawn the benzo.

 

5. Intractable major depression: not responding in a recognisable fashion to antidepressants led me to ECT. Offhand I wouldn't recommend letting anyone take a sledgehammer to your head before they consider what benzos or their withdrawal may be doing to your mood.

 

6. Generalised anxiety disorder; it's the stress of modern living isn't it? Either that or the medication all too often involved in its management.

 

7. Cyclothymias up to and including the increasingly common "bipolars"; you all don't need me to tell you how your mood can cycle from anxiety to depression in one day. Add a little akathisia and you're well on the way to adding antipsychotics to your benzos and antidepressants(olanzapine(Zyprexa) in my case...a truly dirty drug with a definite tendency to invite you to kill yourself).

 

8. Social Phobia; once locked into the Hell of withdrawal the outside world is irrelevant, unattractive and, above all, SCARY.

 

I'm not saying that any or all of these conditions don't exist in the absence of benzos/antidepressants etc.

 

I AM suggesting that the protean presentations of benzodiazepine addiction can, and all too often do, fulfil the diagnostic criteria for many of the softer, and even some of the harder clinical entities. I am suggesting some of these are not "entities" at all. They are just one of the many ways that medicine is actively avoiding the problem of benzodiazepines.

 

It's bad enough to get no help in withdrawal. To get a shiny new label that distracts from the main event is positively harmful.

 

Have a good day.

 

spartacus

I'm printing this out! :thumbsup: :thumbsup:

Many thanks Sundowner and NoKlono.

It's all just an attempt to prove to myself I'm not dementing...yet.

spartacus

Spartacus,

I absolutely love you for posting this. 

This is the next best thing - after the Ashton manual - I've read in a long time. No hard feelings I hope 

strike 1 - I've been diagnosed with POTS (dysautonomia) 3 days or so after my last ativan dose. And guess what, they put me on klonopin to help me with my symptoms.

strike 2 - I had a dr hinting at chronic fatigue syndrome

strike 3 - another dr suggested fibromyalgia

strike 4 - my family dr is still convinced I have GAD because of the stress in my life

strike 5 - depression - I have several prescriptions for antidepressants somewhere around the house.

I dare add brain tumor to the list. Just had an MRI to rule one out. Needless to say I was really scared at the prospective...

Like you I have seen many drs - over 10 specialists who keep sending me to more tests and more specialists, I've also been to the ER one too many times. Off all these highly educated individuals whom I respect for choosing such a noble profession, only 3 hinted at benzo w/d, but they all said it should be over in 2-3 weeks, but I had many others suggesting I increase my benzo intake.

Super awesome post!

Amy

Spartacus....very interesting and well-written post. 

Yes, very, very well said. Im surprised tho, that youhavent stirred up a hormets nest! I read so many posts from people who have been dx'd with these "ailments."

Me:

-Chronic fatigue

-fibromyalgia ( dx'd about 5 ttimes!)

- IBS

-borderline personality ( I was in a hospital, they refused to give me my Klonapin or Ambien because I was on narcotics for pain there, and also was given a floroquinlolone antibiotic....had a MAJOR panic attack and lost it  >>> "bordeline and manipulative, "drug seeking")

-GAD (Im still not sure about this one, only time will tell-)

-adrenal fatigue

-possible MS

-peripheral neuropathy (to explain the frequent falls)

There were others but cog fog (oh, I mean, early dementia!) is preventing me from recalling all of them.

Its of great interest to me that since getting off Klonapin, I no longer have ANY of the symptoms of those "diseases,"  with the one exception of anxiety!

east

"Its of great interest to me that since getting off Klonapin, I no longer have ANY of the symptoms of those "diseases,"  with the one

exception of anxiety!

east"

East, thanks for giving us hope.

Amy

I didnt mention depression, on purpose, because Im not sure about that one either. Time will tell. But I do know that the depression Im feeling now is somehow very different from the feeling I used to have. Its not nearly as heavy and spirit dragging.

east

Thank you all for your posts.

It seems cmlppvc and eastcoast that you have been living bits of my life. I truly wouldn't recommend this to anyone.

I think what needs to happen is the odd psychiatrist, intern, whatever, should be force fed Xanax for a couple of months and then cold turkeyed...in a cage...in a public place. I wouldn't want to be inhumane; it would be a nice cage, all mod cons and the odd banana thrown in.

It would be interesting to see how long it took for them to crack and throw the bananas back or perhaps even demonstrate a touch of drug-seeking behaviour.

Time to try to sleep. Goodnight.

spartacus

OK, so I slept for about 30 minutes last night and I'm feeling less humane.

I am withdrawing some of the mod cons and placing scattered packets of Xanax just out of reach beyond the bars of the cage.

I will be consulting the nearest Sleep Disorder clinic this week to try to add to my list of Primary Conditions and the doctors willing to prescribe benzodiazepines to a proven addict. Failing this the Pain Clinic should be a pushover for a well-known muscle relaxant.

spartacus

possible MS for me but we will see when i am all healed from BW!

oh and i had a Doctor tell me that i will forever have monoucleosis because i had lumpy lymph nodes in the groin area that was one of the first things to go away after the cold turkey. that and the yellow coat on my tongue that i had all throughout tolerance w/d for 10 years. gone within days after the c/t.oh and my voice came back 5 months after the cold turkey and i had lost my voice for about 5 years in tolerance w/d. ooh i should write all this down i didn't realise this!

An excellent post Spartacus and over 40 years I've been diagnosed with the lot! I'm 67 now and the dementia diagnosis was looming! But I'm off benzos and well over four months off and it's all improving. I've been lucky in some ways because I could never take antidepressants or any other 'symptom' drugs due to chemical sensitivity so have only had sleeping tablets to deal with. I think I'm going to show this thread to my GP it says it all, thank you.

You're right about the GPs needing to recognise all this before referring to narrow minded specialists who can only work within their own fields. I strongly believe that GPs and whole practices need to be fully educated about the horrors of withdrawal and how to recognise it. it's my mission for the future here in the UK.

Hi Spartacus,

Excellent post. You caught very well all the aspects and the course of creating patients.

There's only one thing that, in my opinion, is minimized and that is the role of the general practitioners in this business.

Forgive me if I don't understand correctly but I see you portrait them as uneducated victims (about benzodiazepines/tolerance and withdrawal) of the western medical system. In my opinion they are active elements in this malefic mechanism led by the big pharmas and psychiatrists.

If I was to diagnose them , they suffer of criminal ignorance... no, no...protracted criminal ignorance.

In the criminal justice there's "criminal negligence causing bodily harm". Why this doesn't apply to the doctors?

If they don't know they should listen and learn. Not knowing is one, hiding your head in the sand is criminal in this profession and not only.

But as long as they are backed by a multi billion $$$ ruthless industry their life is warm and cozy.

And who's going to give them a little shake? Him, a "psycho"? He wasn't "psycho" before benzos? Then why did he go to the doctor?

The "psycho" may not even remember the answer to this question. They took care of that.

Miti

You bring up some very good points, Spartacus.  Check out the book "How Doctors Think" by Jerome Groopman.  An MD spells out just how common it is for doctors to be fallible and make mistakes. No doubt one must advocate for oneself, even doctors who are seen by other doctors must question and probe, not trust blindly.  I've seen it in my own experience with benzos and with my elderly father who has had cancer for more than five years.  There have been at least two significant times where his primary oncologist recommended a much stronger chemotherapy treatment than was needed and after consulting other specialists for second opinions, went with much milder treatment plans.

In my own benzo experience, I was given poor and ignorant advice from an ER doctor about the potential cause of my vertigo and was also told by an internist to simply stop taking valium after a few weeks and replace it with lexapro for "anxiety".  I knew I was appearing pretty agitated, but I had explained that after reinstatement that I had reduced 2mg too quickly and had not been sleeping for the last day or two.  Internists seem to have gotten on the runaway train about a/ds.  I'd normally have said, that should be reserved for the more educated and "experienced" psychiatrists, but I have to admit that I've read too many horror stories and heard from some friends and family in life about overprescribing psychiatrists, many of whom tell their  patients that 1/2 mg or 1mg of some of the shorter acting benzos is "low dose" or non addictive.  In my view, this kind of advice is negligent if not criminal in some cases.  I have a friend who recently told me he was on 1mg K for anxiety/insomnia but that it was "a very low dose" so he nor I had to be concerned.  Come on people, equivalency to 20mg valium is low dose?  I guess since some psychiatrists are prescribing two or three times that amount, it should be no concern? 

My former internist (different one than who tried to push the lex)  first prescribed valium for a three week overseas trip and cruise back in 2008, gave me 10mg valium tablets.  I later found out from an otoneurologist that 2.5mg would have been sufficient and more appropriate a dose to help with the motion sickness of the cruise and jet lag that I was concerned about.  Has the world gone upside down?  I'm not saying all doctors or psychiatrists are not helpful.  I did find one who was "benzo friendly" who was willing to prescribe liquid valium for me and not push other pills on me so I could safely taper off the valium.  I guess I was one of the lucky ones.  Been off valium for three years and never touched an a/d.  Not saying an a/d might not be helpful to some in certain circumstances or that a psychiatrist might not have a legitimate reason to prescribe other meds, but for me, it was withdrawal from an accidental c/t after not being warned by the internist to taper off the three weeks of valium I had taken on a trip, plain and simple. 

By the way, while I'm at it, the otoneurologist (neurologist who specializes in balance and inner ear issues) I saw, told me that he regularly tapers his patients off 2.5mg valium (which really is relatively low dose in the benzo world) for several months, in order to avoid long term hearing or inner ear disturbances such as tinnitus and vertigo.  When I read on here the number of reports of doctors telling their patients to taper off much larger amounts of valium in a matter of weeks or so called low doses of other benzos like ativan or klonopin, it makes me cringe.  So much pain and hearing problems could be avoided with a little education!

Vertigo (no more)